The Story of Spencer's Journey

In The Beginning - April, 2004 When Spencer was in the 3rd grade, I remember he told me one day how he got tripped while playing soccer on the playground at school. We figured it was just a typical playground injury and it would go away in time. Several weeks later we went to a baseball game and I was going to tell him something so I reached over and laid my hand on his knee, and turned to him, and the look on his face told me he was in severe pain. I said, "What?!!", and he said, "Mom, that's my knee I hurt" The next day I took him to the doctor. Spencer had his knee x-rayed and we were told there were no cracks or breaks, there did seem to be some swelling, so they suggested we ice it down, give Spencer some Motrin if he had any problems and “give it time”. Throughout the course of the next 3 years we went to 5 different doctors, and had 7 sets of x-rays. We were told everything from he might have bursitis, he might have a torn tendon, to he probably just didn’t want to go to school that day, and we were told to just “give it time”. Spencer had bumped his knee a couple of times throughout those years, and it would bring him to the ground in tears, so he learned how to protect that knee very well. When we were getting ready to leave OKC, we were coming out of a bank that had stairs. I was walking ahead of the boys, and I heard a noise. I turned around, Spencer had fallen coming down the stairs. He said his knee just gave out on him sometimes. I promised him as soon as we got to McKinney, we would find a doctor that would help him. The first day of school that year, I got a phone call from the nurse. Spencer had hit his knee at school again...they iced it down, he wanted to go back to class, but they just wanted me to be aware of it. I got on the phone that day, and got into another orthopedic surgeon, Dr. Morgan, for that following Wednesday. Dr. Morgan x-rayed Spencer’s leg (again!) and said that the good news was that there weren't any cracks, or chips, but one thing he was concerned about was the fact that Spencer's right quad was so much smaller than the left...we assumed it was because he had been protecting it for so long, so Dr. Morgan put Spencer in Physical Therapy for about 10 weeks. After the 10 weeks, it was determined the muscle hadn't grown any, so he wanted us to spend 6 more weeks at home working that muscle, and then he would see us again. I explained to Dr. Morgan that I understood the muscle wasn’t growing, and I understood it was going to take time, but no one at this point had determined what this area was on Spencer’s knee that he could run his finger across. (When I would question Spencer about where his knee hurt, he would run his finger across the top of his knee-cap) Dr. Morgan turned around and felt around on Spencer's knee, and then turned back around to me, and started to say something, and I said, "Dr. Morgan, look at his face, just touching his knee has brought tears to his eyes...what will tell us what that one area is?” Dr. Morgan said that he wanted to send Spencer to have an MRI to see if we could see anything. I remember when we left Dr. Morgan’s office that day, we were ecstatic...finally, someone was going to try to help. When the MRI came back Dr. Morgan told us there was definitely a "cystic mass"...my face must have given me away, because he said, “Oh don't worry, we call everything a cystic mass”; but he also said that since the quad had not responded to physical therapy, he didn't know what to do, so he referred us to Scottish Rites Hospital for Children in Dallas. Scottish Rites is a Masonic hospital that only takes patients on referral, but it's one of the top orthopedic hospitals in the country. We were scheduled for an appointment at Scottish Rites with Dr. Sucato. Dr. Sucato told us that the tendon was torn. Torn tendons usually repair themselves with time, but it was obviously such a big tear, it wasn't able to. Spencer would need surgery to repair it. He also told us that the "cystic mass" looked like it was the bursa sac full of fluid, and it had never drained itself, but that it was so inflamed, and engorged, it was pushing his knee cap down. The plan was to go in, repair the tendon, drain the bursa sac, and reset the knee cap in the proper place...the surgery was scheduled for March 5, 2004. This was perfect timing. Spencer would be on Spring Break and wouldn’t have to worry about missing any school. Spencer had the surgery, was recovering great, he had learned to use his crutches very well, and by that Wednesday, he wasn't even taking any pain medication. We thought everything was going great, although we knew he had a long recovery with physical therapy. On March 12, Dr. Sucato called us from a meeting in San Francisco. He wanted us to know that when he was operating on Spencer "the fluid in the bursa sac was not what he expected, so he sent it away to be tested. It looks positive for a tumor". He referred us to an orthopedic oncologist in Dallas, Dr. Gerhardt Maale. On March 16, 2004, Spencer had his first appointment with Dr. Maale. I’ll never forget being terrified when I saw Dr. Maale’s nameplate to his office. It listed his specialties, and all I could think is, “This isn’t right, why are we here?” They took us into an office of Dr. Maale’s, which had these images, slides, and x-rays all lined up on the board. We sat in 3 chairs, facing these images, trying to “see”, make sense of everything in front of us. Dr. Maale walks into the room saying, “Well folks” ‘it looks like we’re dealing with what may be a clear cell tumor, I believe it is a form of sarcoma, it is definitely malignant, we have sent all the slides to the pathologists at the Mayo Clinic to figure out exactly what we are dealing with’. At that point, everything Dr. Maale said was like a foreign language. (Honestly, to this day, a lot of what Dr. Maale says is like a foreign language. He is straightforward, to the point, and very technical. It is something we have grown to appreciate, and when we talk to him, a lot of times, we just write down what he says and ask for translation later!) Dr. Maale immediately wanted Spencer to have a chest x-ray, an MRI, a bone scan, and a chest CT to determine if the cancer had moved to any other part of his body. Very good news the next day; it was determined that at this point, it was localized in his right leg. Dr. Maale wanted us to see Dr. Leavy at Children’s Medical Center in Dallas, and Dr. Munoz at Medical City in Dallas. Dr. Leavy is in children’s oncology at Children’s, and Dr. Munoz specializes in radiation at Medical City. Over the next several days, it was determined that we were dealing with Synovial Cell Sarcoma. Like many cancers, the protocol for treatment is undetermined. Surgical removal of the tumor with clear margins is pretty much a given, but the role of chemotherapy and radiation is still being examined. In a group effort to treat Spencer, Dr. Maale, Dr. Leavy, Dr. Munoz, and each of their contacts came to the conclusion that Spencer would undergo 3 days of a low dose of chemotherapy, followed by 10 days of radiation, followed by surgery to remove the tumor. The chemotherapy and radiation wasn’t to “treat” the tumor, but rather to put a skin around it in a better effort to map out the surgery for removal of it. There was discussion on whether surgery should be removal of the limb, but Dr. Maale at that point believed that he could save Spencer’s leg. Dr. Maale said, “It is NOT an easy surgery, but I believe I can do it.” When we met with Dr. Leavy at Children’s, he walked into the room, introduced himself and his nurse, Miss Pat, to all of us, and then turned to Spencer and said, “Spencer, tell me what you know is going on with you.” Spencer told him what we knew at this point, and Dr. Leavy continued to talk with us, mainly through Spencer, and in time explained to Spencer what the role of chemotherapy was in his treatment, and told him how chemotherapy affects the body. He asked Spencer if he had any questions. Spencer’s question was, “Am I going to lose my hair?” Dr. Leavy told him, “I don’t know. Typically, Spencer, I would say yes, but we don’t know because you will have a very low dose of what we typically give. I will tell you probably, but the truth is, I don’t know”. Spencer replied, “Ok”. So where we stand at this point is that Spencer has had his 3 chemo treatments, and 6 radiation treatments...he will be finished with radiation this Friday, and then he will have 2 weeks off for his body to repair itself, and then they will re-scan, and map out the surgery. Spencer is doing amazingly well...he has been in on all the conversations with the doctors...he knows everything going on, as well as Zachary does too... At first I think we tried to deal with the whole picture, and now we are dealing with it day by day, minute, by minute...we could go on and ask ourselves, well what if this happens, or what if that happens, but that is too hard, so we have to deal with a little at a time." Spencer finished up his radiation on Friday, and now has 2 weeks off, no doctors, tests, anything...On Friday, his started losing his hair...he was adamant that it wasn't going to happen, and when he realized it was, he kind of teared up, but within a few hours, he and Zachary were joking about it. . April 24, 2004 Spencer was admitted to the hospital yesterday because his white blood counts were very low and he had developed an infection in his pic line. His pic line was removed on Thursday and he will be in the hospital until his cultures return negative for infection. Today his white count had improved from 620 to 1500 so that is better so far. Should know tommorrow about the cultures. We shaved the rest of his hair on thursday night so he only has a little stubble left, we should have a picture here soon of his new look. April 25th, 2004 Still in the hospital, we should have the cultures back tommorrow. Spencer is reacting better to the antibiotics now that they are giving him Benedryl prior to the medicine. He had horrible redness and burning after the first treatment due to an allergic reaction. Hopefully he will be discharged tommorrow. April 26th, 2004 A bit of good news finally. Spencer was just released from the hospital and is on the way home. The cultures are negative right now but will continue to be monitered for 5 days. April 27th, 2004 Spencer is feeling much better now that he is home and sleeping in his own bed. Other than that no new news to report. We go for a full day of rescanning and mri's on Friday in order to restage the tumor and will have meetings with the two oncologists on Monday and Tuesday of next week for preoperative planning and staging results. We will have another update posted after we get the results on Mon or Tue unless something happens between now and then. April 30th, 2004 Spencer finished all of his scans and xrays today. The docs worked alot faster than we expected. It usually takes about 12 hours to get them all done, but they managed to finish in about 7 hours. We will meet with two of our onc's on Mon and Tue to get the results and should have a fair amount of info to post after that about the results of the scans and what the extent of the surgery should be. May 3, 2004 The initial reading of the scans by Dr. Leavy was good. He said that the Lung CT and the bone scan were clear and he said that the effects of the radiation and chemo were good. He also thought that the chances for limb salvage were good but that we should talk to Dr. Maale first for the final determination. It was very good news overall, but it was just an initial reading and the final reading will be tommorrow by Dr. Maale. We will post the results of that visit tommorrow afternoon or evening. May 4th, 2004 We visited with Dr. Maale today and here is a summary of what we think he told us. He confirmed that the lungs and bones were clear so the tumor has not metastized at this time. The tumor is stage three and a high-grade lesion. He believes that with the resection of the muscles he will be able to remove all tomurous tissue with clear margins that will lessen the chance for recurrence. The majority of his quad will be removed as well as his patella and some muscles will be grafted onto the remaining quad and others will be “flapped” up from the lower leg and around from the back of the leg. The one problem he encountered is that when the original surgery was done the tumor was cut causing the knee joint to become contaminated. In order to remove all contaminated areas a synovectomy will have to be performed. The synovectomy will remove the synovium (which secretes synovial fluid to the soft tissue in the knee) and the removal of much of the soft tissue in the joint. If all of the contamination cannot be removed while still leaving some function of the knee he will make the decision regarding amputation during the surgery. Because knee replacement is not an option for children it will be better to amputate than to try to salvage the limb. The contamination does create a higher risk of recurrence but Dr. Maale believes he can minimize that through the procedures described above. Following the surgery they believe he could be released as early as within 3 days. He will have to be placed in a hyperbaric chamber for 3 hours a day for 10 days to minimize the risk for infection after surgery. He will then be given his rehab schedule and will also receive postoperative chemo treatments to eliminate any rogue cancer cells that may be roaming through his body. We have been given very few statistics regarding the prognosis as type, location, and overall condition of this tumor is very rare. The last medical papers written for this type of situation were written in the 80’s and were not a big enough study to gather true statistics, only trends. Obviously this is a brief summary of a lot of technical information, much of which we don’t even understand even as we go through it, but if you have questions or want more detail on any of the things mentioned please call us or email us and we will do our best to explain things in more detail. It will not be an intrusion and we are more than happy to discuss any of the details. Thank you all for your continued prayers. May 7th, 2004 No new news to report, just preparing for surgery on Monday. Some of Spencer's friends from school that he hasn't seen in a while came over to spend the evening with him. It really lifted his spirits, i don't think he stopped talking the whole time. Jabber, jabber, jabber, just like a bunch of little girls. May 10th, 2004 We are about to head to the hospital, surgery should be early this afternoon but we don't have a specific time yet. We will get an update here as soon as we can after the surgery, but it may not be until tommorrow. May 10th, 2004 PM Sorry this is so late but just got home from the hospital. Overall the surgery went well. Dr. Malle was able to salvage the leg. He did have to do major reconstruction of the muscles. Muscles were brought around from the left and right side of the back of the leg to the front to help make up for some of the quad that was removed. Some was also brought from the lower leg to cover the knee cap that was removed. There wasn't enough remaining muscle to completely cover the knee cap area. Because of the amount of work done on the knee he had to graft some skin from his left thigh onto the knee. The good new is that Dr. Maale believes the surgery was successful enough to reduce the risk of reccurrence to about 10%. However, because of the amount of muscle and knee joint tissue removed he doesn't know if Spencer will have the ability to "lock" his knee and he will probably after physical therapy only be able to bend his leg about 20 to 30 degrees from the straight position. We don't really know to what extent he will be able to use his leg until after he completes physical therapy. Spencer was resting when we left. The surgery was a little over 2 hours and he was in recovery for about 1 1/2 hours. He is currently in room 417 on the 10th floor at Childrens Hospital in Dallas. Dr. Maale expects Spencer to leave the hospital on Wed or Thur if there are no complications. I will try to keep this updated between visits to the hospital but please be patient over the next couple of days. May 11th, 2004 Spencer is feeling much better today, the epidural is controlling the pain and they should be removing it tonight. He was pretty alert most of the day and got to get out of bed and get in his wheel chair twice and should once more tonight. He will be in a wheelchair for a few weeks until we see if the physical therapy will let him put any pressure on his legs. It still looks like he will be out of the hospital on Wed. night or Thur. Thanks to you all again for all your thoughts and prayers. May 12th, 2004 Well, Spencer had a rough night last night. His epidural was removed because of some discharge and redness and he was having a lot more pain without it. He developed a bed sore on his heel due to the immobility which was causing him a great deal of pain. Then he got a fever of 102.2 and they had to put him on heavy antibiotics and do a chest xray about 2:00 am then at 4:00 am they came and took the cathater(sp?) out. They said it would take 48 hours to get the blood cultures back to see if the fever was due to infection, they wont release him until the cultures are negative for infection, so maybe Friday at this point. I just got off the phone with Rhonda and he was finally able to go to sleep after being up due to procedures, tests, and pain for about the last 36 hours. He is hanging in there and handling it the best he can, hopefully it will be a better day tommorrow. May 13th, 2004 Spencer got to come home from the hospital this evening. He is very happy to be home and that he gets to eat pizza. His pain is better today, just hurts alot moving in and out of the wheel chair and moving around. We meet with Dr. Maale for a check up and dressing change tommorrow morning and then our first 3 hour session in the hyperbaric chamber in the afternoon. We will meet with Dr. Leavey at childrens on Monday for follow up and then two more weeks of daily sessions in the chamber. Sorry about the guest book, I am still working on it, hope to have it fixed soon. May 17, 2004 There's not a lot to update today, Spencer has had 3 sessions in the Hyperbaric Chamber, they let him pick whatever movie he wants to watch everyday, (the technician is trying to get a grin out of Spencer!) Hopefully the chamber will help the wound heal pretty quick, we'll just have to wait and see...We still haven't received the final pathology reports from the surgery, we'll let you all know as soon as we get them...Spencer is already getting peach fuzz all over the top of his head, it's as blond as can be! We also want to take a minute to say thank you to all of you for all the prayers, thoughts, and words of support...Spencer is truly blessed to have so many who care about him...THANK YOU!! May 21, 2004 Not much to report, didn't get the final pathology today, expect to get it monday now. Spencer's leg seems to be healing fine, he will have to continue hyperbaric treatments until next Friday. May 24, 2004 We had an appointment with Dr. Leavy today:he wanted to go over the final pathology, and just wanted to see how Spencer is doing. The final pathology shows that Dr. Maale did get all of the tumor. Dr. Leavy said that he even had everything rechecked so that they could be sure. He still doesn't believe Spencer should go thru any additional chemotherapy, but he also said that there is still one doctor he has consulted with that has been out of town, so he is still waiting on his opinion. But the chances of Spencer having to go thru chemotherapy again at this point seems pretty slim. Dr. Leavy is very pleased with the final patholgy reports...(so are we!!!) Anyway, he said that now, we let the wound heal, and start rehab. Dr. Maale has Spencer still doing the Hyperbaric Chamber thru this Friday...they seem to be helping alot, the wound is looking much better, and the skin graph seems to be healing quite well. Spencer is doing very well, his attitude is still great (amazingly!) and his pain level seems to be subsiding quite a bit...he is now to the point where in the daytime he just takes Motrin for the pain. He has lowered his leg a couple of times, and thinks he will be ready for his crutches pretty soon. We are a little nervous about Thursday...We have an appointment with Dr. Maale, and he suggested that he might try to get the leg to bend...Spencer hasn't bent his leg since March 5th, so we don't quite know what to expect except to figure it is going to hurt! I told Spencer that I have butterflies in my stomach every time I think about it, he told me he has bumblebees! Dr. Leavy seemed a little concerned when he heard that Dr. Maale was going to try to bend it, and he told us to be sure to give Spencer any kind of pain medication we have before we go into Dr. Maale's office...I told him, "yes! We had already thought about that!" Anyway, I guess that's about it, except to say thank you again for all your support and prayers...Spencer has quite a long road ahead of him on rehab, but that too, we'll have to take one step, and one day at a time. We'll let you know what happens at Dr. Maale's on Thursday. May 31, 2004 Happy Memorial Day Everybody. Sorry about the lapse in updates, but there really hasn't been much going on. Spencer finished his Hyperbaric treatments on Friday. He was having a little bit of an allergy problem so when they started diving his sinus cavity started hurting and they had to bring him back up, but the treatments seemed to have worked real well on the skin grafting. Dr. Maale didn't bend the knee as much as we thought he would but he set us up to be molded for a new brace that will aid in his physiotherapy which is set to start in about 2 weeks. This week we meet with Dr. Maale on Thursday to probably remove the rest of the staples, also with Dr. Munoz to follow up on the Radiation. Spencer is doing very well, very little pain left unless the leg is jostled. He had the whole holiday weekend off, no Dr. appt. no treatments, got to sit around the house all weekend for the first time in a long time. An extra bit of information, Zachary was voted his 5th grade classes "Alpha Wolf of the year" at his school, the highest honor given out at the end of the year. June 11, 2004 Spencer went back to Dr. Maale on Thursday. They took the last of the staples out around the skin graft. Everything seems to be healing fine. Dr. Maale is going to have Spencer start physiotherapy on Monday. All he will be doing at this time is "range of motion. He said that he was going to start real easy and just go 5 days a week for now, we are a little scared to find out what it will be like when he decides to not take it so easy. He will have an appointment next week with Dr. Leavey and Dr. Maale at the childrens orthapedic oncology clinic. Don't know yet what that will be but will let everyone know after we go. June 22, 2004 Hi Everyone! Just a quick update on Spencer’s progress… In Physical Therapy last week, Mark (Spencer’s Physical Therapist) was able to get Spencer’s leg bent to 62 degrees and was able to get it to 0 degrees after a little work…Spencer has more pain in straightening it than he has bending it… We went to see Dr. Maale and Dr. Leavy on Friday, and Dr. Maale seemed pleased (we think!!) that Spencer could bend it that much and straighten it that much, and he told me to set Spencer’s brace to 90 degrees! If you remember, Dr. Maale told us after surgery that Spencer might get his leg bent to 30 degrees…then last week he told us to work on 30 to 40 degrees, and in a couple of weeks he wanted Spencer to try to make it to 60 degrees, but didn’t know if he would be able to make it because of the scar tissue and muscle flap…in the first week of physical therapy, Spencer has already surpassed those expectations! On Friday, Dr. Maale also told Spencer that he wanted him working on bending and straightening the leg by himself without any help…Spencer did that on Monday!!! Spencer has to bend and straighten by himself for 30 times each day in PT…he is a little shaky by number 30, but he is still doing it! Dr. Maale also said Spencer could put 50% body weight on his leg as long as it is in full extention, so he is working on that this week also! Dr. Leavy told Spencer that he has already exceeded all expectations that Dr. Maale had from him…he is very proud of Spencer! Dr. Leavy also is setting it up to have Spencer’s first scans after surgery done within the next 2 weeks…we will let you know what happens with those. Spencer is getting quite a bit of hair…we can’t tell if it’s going to be blond, black, or red!! I told him it could be all three! It also looks a lot more coarse than it was, and we think that maybe it’s going to be curly…I told him he should look pretty cute with a blond, black and red afro! I think he’ll shave it off again before that happens! Spencer is doing great mentally…I think he is starting to get a little stir crazy…hopefully Dr. Maale will give him the okay to go swimming soon! We’re trying to get some more pictures to post…thanks for your patience! Aug 4, 2004 Hi Everyone, There’s not a lot to update…Spencer is making great progress in PT…Mark (the physical therapist) is able to passively get Spencer’s leg to bend to 85 degrees, and Spencer is able to bend it to about 70 degrees on his own…Spencer is now working on “kicking out” his leg…he can contract the quad muscle pretty good, and he can make his leg extend out just a bit, but it’s going to require lots of time, patience, and hard work to be able to extend it on out by himself…Mark has also had Spencer work on walking with one crutch…he’s pretty good at it, in fact that’s about all he uses around the house unless he’s sore or tired from PT…Dr. Maale saw Spencer walk with one crutch, and literally had to sit down…he laughed, shook his head and said, “Folks, I think we’re going to make it!” That’s the second time Spencer has got Dr. Maale to smile!!! Spencer gets a kick out of that! Spencer has had his MRI of the lymph nodes in his groin area…Dr. Leavey said that so far everything looks fine, we just need to keep an eye on them… Dr. Maale has done chest xray on Spencer, and that has turned out fine also… So, as of now, everything is looking very good! Again thank you for all your continued prayers and support! Aug 14, 2004 Hi Everyone, There is not lot to update (which can be a good thing!!), Spencer is doing great in PT…he is pretty much bending his leg 90 degrees, but Dr. Maale wants him to hold out there and work on building up those muscles…we are working on “kicking out” the leg, which is very difficult, but Mark has shown Spencer how to do it laying on his side with no gravity pushing it down, so Spencer is capable of doing that to help build up that muscle. Spencer has had his first xray of the leg after surgery, and Dr. Maale said there are no signs of recurrence at the point…he wants to see Spencer back in 6 weeks, he said Spencer can start working on putting 100 percent body weight on the leg and “we will look at taking the crutches away”…that kind of scares me a bit (ok, a lot!!) and I asked Marcie about it, and she told me that we have to understand, Spencer will make a ton of progress in 6 weeks, and Dr. Maale will reevalutate him before he makes that decision. I told Spencer that he’s got a lot of hard work in PT the next 6 weeks, and he said, “Maybe we shouldn’t tell them what Dr. Maale said”!! Dr. Maale is very happy with the way the skin graph has healed and gave Spencer the go ahead to go swimming…needless to say, we went swimming all day that day, thanks to Manjit next door who let us use her pool!! It was pretty incredible to watch him…it was almost like he had no limitations! Mark said that is the best PT he can do right now, because Spencer will bend and straighten his leg in the pool so many times and will never think twice about it. We are now working on getting ready to go back to school…we’re (I’m) a little nervous because again we have to start a new school (we were rezoned!), but Spencer is getting kind of excited about it…we start on Tuesday the 17th…we’ll let you know how that goes…I’ll probably look back in a couple of weeks and wonder what I was worried about! Spencer’s re-scans are set up for September 20, and he will also have an appt with Dr. Leavy that day, and then he has an appt with Dr. Maale on the 16 of Sept…so until then he will start school, and then go to PT after he gets out…hopefully we can keep him missing any school at a minimum this year! Sept 1, 2004 Hi Everyone, Spencer and Zachary are back at school and everything is going great! Spencer has gone from 2 crutches down to 1 and that helps free him up a little bit to open doors and carry books if he needs to. He didn’t get as worn out as I thought he would going back…I actually think that he likes being back in a routine of friends and learning instead of doctors and mom!!! So far all the checkups and scans have gone well…we are set up for another set of them on Sept 20…we’ll keep you posted on how those turn out! We hope you are all doing well…we appreciate all of you!! Sept 3, 2004 We just wanted to share with everyone the latest development with Spencer…Yesterday in PT, he walked without crutches! He had asked Leslie the day before if he could start working on “some balancing exercises or something like that” for his right leg, and then that night he took a few steps at home for us, and then when he got to PT he wanted to show them, and actually ended up doing 3 laps around the PT room, and then walked from PT to the car without crutches! I told him, “Now Spencer, you know you’re not strong enough to do this at school yet, don’t you?!!!” He said, “I know Mom”. He does have to have his brace locked to support him, but…that’s ok! He’s pretty excited about it…very proud of himself…as well he should be!! We’ll keep you posted! Oct 28, 2004 Spencer went to the childrens orthopedic oncology clinic at childrens hospital on Friday and met with Dr. Maale, Dr. Leavy, and some folks from Scottish Rites Hospital. The doctors had been debating with each other and us for a few weeks about whether Spencer needed a drop lock brace in order to walk without his crutches. Our physical therapist had been allowing Spencer to walk without his crutches for about two weeks and it was going well so far. When the eight folks finally crammed into our tiny exam room Maale said that Spencer required a drop lock brace, and Scottish Rites was saying they don’t want to put him in one and Leavey was sort of riding the fence and asking questions, and Maale said, you don’t understand, Spencer doesn’t have a knee and he has no way to lock his leg to walk, he can’t walk without the drop lock. Scottish Rites then had Spencer walk out and back in the room for Maale. Maale got a stunned look on his face and asked him to take his brace off and walk so he could look at his knee when he walked. At this point Maale started laughing and said, I guess I am better than I thought I was. For those who don’t know Dr. Maale, this is entirely out of character for him. We have seen him smile only once and have never seen him laugh. At that point he decided that Spencer didn’t need a drop lock and agreed to let him start working on not using the brace at all. This was great news for Spencer as he has been in a brace or cast every day since March 3rd. Yesterday our physical therapist agreed to let Spencer go without his brace as long as he is not at school or around a lot of people, so he came home yesterday and didn’t put his brace back on until he went to school this morning. Nov 25, 2004 On this Thanksgiving Day, we have so much to be thankful for… We are so thankful for all your thoughts and prayers, not only Spencer’s recovery, but for our entire family, I wish I had the words to express what they have all meant to us, I feel that through those thoughts and prayers we were given the strength to handle all that we have endured throughout the year… We are thankful for all the healthcare providers that have all played such a vital role in Spencer’s recovery…this includes the surgeons, their assistants, the nurses (each one of them!), the oncologists, the physical therapists, the radiologists, the anesthesiologists, and each person around the world that we haven’t met, but have given their opinions on what would be best for Spencer… We are thankful to the Market Street team for being so patient and supportive with Gary, and allowing him the time to be with his family when we needed him so much, but also giving him a place to go where he was surrounded by so many caring people… We are thankful for that little extra something that God gave to Spencer that would help him overcome so much more that any doctor ever believed was possible… We are thankful to Zachary for never treating Spencer any different, for moving downstairs so he could sleep in the same room as Spencer, and for all those nights he lay in bed late at night talking like brothers should, and for keeping things “normal” for Spencer… We are thankful to Spencer for never treating Zachary any different, for allowing Zachary to move downstairs with him, for laying awake late at night talking to his little brother, and for keeping things “normal” for Zachary… We are thankful to all of Spencer and Zachary’s teachers and friends that knew everything they were going through and let them talk when they needed to, let them not talk when they didn’t want to and for sticking by their sides to help them with anything they needed… I never would have thought that I would be saying this, but we are thankful for that “Taylor” sense of humor! I specifically remember the day that I was shown that it was okay to still laugh about things when your world is crashing down…that “Taylor” sense of humor has become one of the greatest gifts in our lives… We are thankful to each of you for all of your cards and journal entries, we are so blessed to be in a world with so many caring, thoughtful people… We don’t know what the future holds for Spencer and this family, but we know that we have been blessed in so many ways and by so many people…we didn’t want this day to go by without letting each of you know that you are appreciated and that we give thanks for each of you…Happy Thanksgiving from the Taylor’s!! Jan 6, 2005 Spencer's December scans came back fine. He continues to make good progress with his therapy. His next set of scans will be in April. We will have an appointment at the end of February with Dr. Cicado at Scottish Rites about whether Spencer will need surgery to shut off the growth plate in his other leg. Feb 28, 2005 Hi Everyone! There hasn’t been a lot going on…Spencer is continually doing his physical therapy and going on! We had an appt at Scottish Rites today…Dr. Maale wanted Dr. Sucato to be the one doing the evaluation on Spencer’s growth so that they would know when to go in to do surgery to close the growth plate on Spencer’s left leg, since the other one had been closed from the radiation. Dr. Sucato had them do some x-rays on Spencer’s legs and hips. He brought them into the room, and said, “This is really neat, because it will show to the centimeter how his growth pattern is going…it looks like there is only going to be about a 2 centimeter difference in the leg growth, which anyone can have and never know it…the growth plates look good…” and I said, “Both of them?!!!” And Dr. Sucato gave me this weird look and said, “Yes, look” He showed me that what they look for are black lines indicating that the growth plate is still open…he reached up and traced the black lines on the xray of Spencer’s right leg, and said that it’s not as open as the left leg, but they are definitely still open. I turned and looked at Spencer and we both kind of laughed, and I told Dr. Sucato that the growth plate was another thing that there was no way could still be open…Dr. Maale had told us that Spencer had 5 times the amount of radiation it takes to close the growth plate…there was no way it could have survived radiation. Dr. Sucato looked at us, and said, “You just have to call him the miracle boy” He told us since there was such concern about it, he’ll still keep a close eye on it, but he doesn’t see that there is going to be a problem, so he told us to come back and see him in about 6-8 months. When we were leaving, Spencer said, “So that means I’m going to grow like everyone else”, I said, “It sure looks that way!” He’s on top of the world! We don’t have anymore appointments until April…Spencer has his re-scans then…we’ll keep you posted. May 6, 2005 Hi Everyone! Spencer did his first Relay for Life walk on April 22nd…it was an incredible experience for all of us! We started out the night around 6:00 pm, and the first place Spencer was to go to was the “Survivor” tent…they had some food set up in there for all the survivors and their families, or caregivers, and it was a place for everyone to kind-of mingle and talk and get to know each other. All the survivors or those being treated wore purple shirts for the night. It was a little overwhelming at first, and very emotional…the person in charge of the McKinney Relay for Life came and introduced himself and told us that the night would be an emotional roller-coaster for us, and he was right…there were times we were extremely up and times we were emotionally overcome. Around 7:20, all the survivors and their families gathered in seats in front of the stage and the McKinney firefighters raised the flag for the National Anthem, and there were several speakers including a survivor story. This girl was 15, and she was diagnosed when she was 18 month old. Sorry, I can’t remember what type of cancer, but they doctors had to take most of her hamstring, and she wasn’t supposed to ever be able to walk again, but they were able to take a nerve from her other leg and do a surgery that makes it possible for her to walk with an ankle brace. I leaned over to Gary and said, “There’s Spencer a girlfriend!” Gary laughed and told me he was thinking the same thing! Spencer didn’t have a comment on the plan, just a “mom” look! After she spoke, they started reading off all the survivor names that were in attendance that night, and as they read, each of them were handed a balloon and a medallion, and lined up on the track as a group. Once all of the survivors were on the track, they all released their balloons and the McKinney Police Dept led them around the track and the McKinney High School Band followed them all. Spencer had decided that he wanted to walk by himself, so I asked another survivor that was on the Marketstreet Team if she would walk with him. We kind of lost track of Spencer for awhile, but we saw him as he was going around the first turn, and then when the front of the group came around again…guess who was leading the bunch! Yes, Spencer!, by a long shot!! We all couldn’t help but laugh! Around 9:00 everyone was asked to clear the track, and all the lights in place were turned off, and the only lights were all the luminaries that lined the track. The luminaries lined the track, and each one had a name on it. It was either the name of a survivor, or the name of those that have passed on. There were some more speeches given on stage, and there were several songs performed, and then there was the “Moment of Reflection” in which all the names of the survivors or those that have passed on were scrolled across a screen on the stage. It was a truly eye opening experience, the list went on and on… Then all the survivor caregivers were called to the track, and each were given a lighted torch to carry. We had taken Justin, Spencer’s friend from school that has helped him carry his books and trombone when he wasn’t able to, and we asked Justin to walk with us during the caregiver lap since he was Spencer’s caregiver at school. As we walked, again, seeing all the luminaries and seeing all the names of the people that have survived and then all that haven’t, was a very emotional experience. After that, it was time for the teams to just start walking the track. I wish you could have seen it all…in the middle of the track was a big stage that had performers on it all night, and then all around the stage and the track were tents. More tents than you’ve probably ever seen together in your entire life. Some of the teams had fundraising things going on, such as selling hope bracelets, selling food, selling coffee (which became my favorite place!!!!), there was even one team that had poker! That’s where Spencer, Zachary and Justin ended up for most of the night! They had dunking booths, pie throwing contests, face painting, probably everything you can think of, someone had a tent set up for it, and then in midst of all of this going on, people were continually walking around the track. When we first got there, I really didn’t understand the significance of walking around the track, and figured we would leave after the caregiver lap, but the boys wanted to stay, and this is what was written in the front of the program as to the significance of the walking… Relay for Life starts at dusk and ends at the next day’s morning. The light and darkness of the day and night parallel the physical effects, emotion, and mental state of the cancer patient while undergoing treatment. The RELAY begins when the sun is setting. This symbolizes the time that the person has been diagnosed as having cancer. The day is getting darker and this represents the cancer patient’s state of mind as they feel that their life is coming to an end. As the evening goes on it gets colder and darker, just as the emotions of the cancer patient dies. Around 1:00 a.m. to 2:00 a.m. represents the time when the cancer patient starts treatment. They become exhausted, some sick, not wanting to go on, possibly wanting to give up. As a participant, you have been walking and feel much the same way. You are tired, want to sleep, and maybe even want to go home, but you cannot stop or give up. Around 4:00 a.m. to 5:00 a.m. symbolized the coming of the end of treatment for the cancer patient. Once again they are tired, but they know they will make it. The sun rising represents the end of treatment for the cancer patient. They see the light at the end of the tunnel and know that life will go on. The morning light brings on a new day full of life and excitement for the new beginnings for the cancer patient. As a participant, you will fell the brightness of the morning and know that the end of the RELAY is close at hand. When you leave the RELAY, think of the cancer patient leaving their last treatment. Just as you are exhausted and weak, so is that person after treatment. Gary and I started walking continually around 10:45-11:00 and except for maybe 20 minutes throughout the entire night; we walked until 5:30 the next morning. There were several times we wanted to quit, and several times our bodies wanted us to quit, but we kept remembering that Spencer never quit, he didn’t have a choice in his treatment, so we kept on. The next morning, I had to literally lift my leg in and out of the car! I thought how ironic, I remember Spencer lifting his leg in and out of the car for so long! It was a night we will never forget. It is an experience we will never forget, and it is something we will always try to be a part of. Spencer and Zachary are already trying to come up with fundraisers for next year! Spencer definitely “got” that he was part of something big. Thank you all for your support of Spencer through this, your support means the world to us! Spencer had all of his re-scans on the 25th and saw Dr. Maale on the 28th…all of his scans are fine, and Dr. Maale is very pleased with Spencer! Mark told me the other day that he wants to start working with Spencer to maybe start running again. He going to do that by having Spencer start running in water up to his shoulders and then once he gets comfortable with that, start running in water up to his waist, ect…ect… and once Spencer can do this, he will start working with Spencer running on land. Maybe by then I’ll have gotten used to the idea of Spencer running! I don’t know what we’d do without Mark and the physical therapy team; they have been such a blessing to our family and especially to Spencer. We’ll keep you posted on how everything is going…I know the posts are few and far between at this point… but truly, that’s a good thing! Sept 15, 2006 It’s been a long time since we felt the need to create any journal entries. Spencer’s life had returned to that of a normal everyday 14 year old young man. He has continued to undergo his scans every three months at either Children’s Medical Center in Dallas, or at Dr. Maale’s office. In February, Spencer’s leg started to stiffen up and we inquired about it when we had his scans, but it was just slight stiffening, and nobody really gave it much thought. Spencer and Zachary took a trip to Amarillo over Spring Break in March this year and when they returned, Spencer leg was definitely much worse. Mark put Spencer back in a brace and on crutches until we could get in to see Dr. Maale. Spencer underwent a series of scans again in April, but all that was seen was some fluid and edema back behind the knee area, which was thought to be from an injury that Spencer might have obtained that he was unaware of. Spencer stayed on one crutch and wore a brace because without being able to straighten his leg, he was unable to sustain himself on his own. During this time, Mark focused Spencer’s physical therapy on straightening his leg. In August, Spencer had his scans again. The chest came back clear, but there was a change in the area behind his knee that caused some concern, so Dr. Leavy ordered a biopsy. Spencer initially had a needle biopsy, but the tissue came back as “normal”, and Dr. Leavy told us we needed to do an open biopsy because even though the tissue may not be cancerous, it was definitely not “normal”. Spencer’s biopsy was scheduled for Monday, September 11. When Dr. Maale came out of the operating room, he told us that when he cut the posterior capsule in Spencer’s leg, it released somthing that was obviously malignant. He said we would of course need to wait for the final pathology, but preliminary pathology confirmed that the tumor is malignant. The plan is now for Spencer to receive chemotherapy for 5 days followed by 2 weeks off, then 5 more days of chemotherapy followed by 2 weeks off. They will then rescan Spencer’s leg to see if the chemotherapy has affected the tumor in any way, and then Spencer will be scheduled to have his leg amputated. Depending on whether or not the chemotherapy has had any affect on the tumor, Spencer will then receive 6-8 more rounds of chemotherapy. Synovial Cell Sarcoma is typically a chemical resistant cancer, meaning it usually doesn’t respond to chemotherapy. This is what they have told us for two years, but Dr. Leavy told us that there are some drugs that it has been shown to respond to, he knows what those are, and that is what they will be using on Spencer. The chemotherapy treatment is not being used to “treat” the tumor that Spencer already has, it will be used to treat any cells that may be present in Spencer’s body that are yet undetectable. The treatment for the tumor Spencer has present in his leg right now will be surgical removal of the tumor, which for Spencer will be removal of his right leg. Spencer is handling everything the way he always does, this is a matter of fact situation, this is what needs to be done to get rid of the cancer, and he seems to be prepared for everything. I had talked to him about the stairs at home, whether he would be able to do them with two crutches and one leg, and he informed me he could, he had already “practiced” at home and at school. Dr. Leavy told Spencer on Wednesday that he could start the chemotherapy that afternoon, or he could start on Monday. Spencer wanted to finish out the week at school and start chemotherapy on Monday. So that is now the plan. Spencer will be at Children’s Medical Center in Dallas at 9:00 on Monday morning, September 18th and he will stay there for the week to receive his chemotherapy treatments. At this time, Spencer plans on going to school the two weeks in between his treatments. We will pick up his assignments at school and hopefully he will be able to keep up with his school work in the midst of all of his treatments and surgery. We will do our best to post journals for the week, and let everyone know of his progress. We thank each of you, there are so, so many of you, but we thank each individual one of you for your thoughts and prayers. Sept 16, 2006 Last night we took Spencer to the McKinney North Football game in Forney Texas so that he could be with his high school band. He was unable to perform due to the new port and the leg surgery but wanted to be there. At the end of the game one of the football coaches came and got Spencer and took him out to the middle of the field where the team was having their post game prayer and coaches after game speech. After Coach Pratt finished speaking to the team he got Spencer and pulled him to the middle of the team. He introduced him to the team and then told Spencer that he had told the team about him and the team had had a prayer for him that morning at practice. He went on to tell Spencer how much courage and strength he had and that the team would continue to play and to pray for him. At that point he g ave him an official McKinney North Football Helmet that had been signed by all the players and coaches. Then he asked Spencer if he wanted to break them out. Well, due to Spencer’s leg he has never been able to participate in sports and didn’t know what this meant. So the coach told him to say “Dawgs on three” then count to 3 and the team would yell “Dawgs” and then break the team huddle. So the team surrounded Spencer and he raised the helmet and yelled “Dawgs on three, - one – two – three” and the whole team yelled Dawgs and then all came and congratulated him and offered words of encouragement. Needless to say it was an incredibly touching moment for all of us and quite a moment for Spencer the Freshman surrounded by all the Junior and Senior Football Players. Sept 18, 2006 Spencer got to the hospital this morning around 9:00. He had to go to the clinic to get his port reactivated and to get an IV. They said he had to have the IV for 4 hours before he could get his first treatment. He got into a room about 1:30 and should get his first treatment starting this evening. He is in Childrens hospital of Dallas on the 10th floor in room 408. Sept 19, 2006 Day 2 was pretty normal. The treatments only took about 7 hours today. He was just a little nauseated tonight and not much of an appetite, but overall seems in pretty good spirits. The biggest thing is being tired because they have to wake him up so much throughout the night. Two down and three to go. Sept 20, 2006 There have been some questions about Spencer's treatment regimen so I figured I would post it here so everyone would know what the process is. First they give him three anti nausea drugs (zofran, dexamethasone, and emend), two by IV and one by pill. This takes about 30 minutes. Then they give him the first chemo drug (etoposide) for about an hour then the second (ifosfamide) which takes about an hour and a half. Then they give him Mesna which is to protect the bladder and this takes about 3 hours. the rest of the time he has to be on IV fluids. A long process, but the anti nausea drugs make him a little drowsy so he gets to sleep through a big part of it. Sept 20, 2006 Spencer was feeling much better today. He ate 2 Mcdonalds hamburgers and a big order of fries for lunch. He is very tired and bored. He has to be woken up every two hours so their sleeping patterns are very erratic. Found out yesterday from some forum friends that you can email him at the hospital. Click here to get to the Childrens hospital website and in the upper right corner click on "email a patient" and you can send him an email that will be delivered to his room. He should be there through Friday evening. Sept 23, 2006 Sorry for the lack of updates the last couple of days, but has been very hectic with work and school functions along with everything else. Spencer got home from the hospital on Friday about 7 pm. He had his last treatment that day about 5 and left the hospital about 5:45. Zachary who plays in the Dowell Middle school band got to go play with the high school band at the football game that night, (although a different high school than he will be attending due to wierd school zoning issues). I dropped him off at the school then came home and Rhonda and Spencer got here as I was about to go to the stadium to see the game and band performance. Well, after Spencer had been home for about 5 minutes he said "aren't we going to the game". So they got home, in the house for about 5 minutes, didn't even have time to unpack the car and he was ready to go to the game, so we went and he seems to be doing fine like he wasn't even in the hospital all week. As we were leaving the game we saw Leslie (one of his physical therapists) and she said she had something for him so we followed her to her car and and she gave us a box. Well, inside was an official NFL football from the Houston Texans that had been signed by Fred Weary, Eric Moulds, Kailee Wong, Seth Payne, and Zach Wiegert. You can click here to get to their web page to see any info on those players. Also in the box was a Houston Texans cap signed by Mario Williams, the first overall pick in the draft this year. It was very unexpected but needless to say he was very excited about it. Will try to do better about the updates, just not enough time in the day sometimes. Sept 25, 2006 Spencer had his blood counts checked today. The main count that is watched are his ANC levels. Last Monday, before the treatments his ANC was 2400, today it is at 1900. This is very good. We have to start worrying and watching him when these fall below 500 and he won’t be able to continue his treatments if this is below 700. So….good news so far. He will have these checked again next Monday. We also have an appointment tomorrow with Dr. Maale. When we finished with his check up, Spencer wanted to go to school, so…he went! He seems to have had a great day. He also got to go back to band practice after school. It’s nice to see him get to have a normal day. Tonight, some members of the Boyd High School Band (the new high school in McKinney) came over and brought Spencer a card signed by all the band students and some “gifts to keep him occupied”. The kindness, thoughts and prayers that have been extended to Spencer and our family are incredible. I hope each of you know how much you are appreciated. Sept 27, 2006 Everything went well with Dr. Maale yesterday. Took the stitches out and said everything looked normal. Told us his fittings for his prosthetic would be about 2 1/2 to 3 months after the amputation. We were expecting much longer. Not sure why we thought that, but good to know it will be fairly soon. Spencer had his first full day at school today. He got to go 1/2 day to school Mon and Tue in between appointments, and looks like he will get to perform with the band Thursday night at the game. Sept 29, 2006 Spencer was admitted back to the hospital this afternoon. He bagan to run a low fever, between 100 and 101, so the hospital said we needed to bring him in. They did some blood counts and his ANC had dropped to 6. This is what started at 2400 prior to the first chemo treatment and was at 1900 on Monday. He will have to stay in and on antibiotics until it gets to a safe level. Don't know how long yet. The doc said that it was about as low as it could go, so should start going back up soon. Don't know yet if they will release him when it hits 500 or 700. We don't have any more details at this point so we will update as soon as we know more. His birthday was yesterday, but he had a football game so we had planned on having the cake tonight. We are planning on taking the cake to the hospital tomorrow to celebrate his birthday. He is also real dissappointed that he is going to miss his drum line competition tomorrow. Not the best birthday to have, but he feels fine and as long as we can avoid an infection it shouldn't be to much of a problem. If you want to send him an email, the link is on the Sept 20th update and he is in room 419. Sept 30, 2006 It looks like it might be good news today. Spencer's ANC had climbed to 348 by this afternoon and the fever is gone. The doc's said that as long as he has no fever and his count continues to climb he could be released sometime tomorrow. He looks fine and feels fine and is getting more sleep than he normally does in the hospital. We have to wait for the test tomorrow, but at least it is moving in the right direction for the moment. He had some cake and got to open his presents at the hospital today, so all in all a pretty good day. Oct 1, 2006 Spencer got home today about 1:30. His ANC was about 4000, the docs say this is normal with the neulesta injection he got on Monday. Just wish it would have kicked in sooner. They had to wait the 48 hours for the cultures to come back and they were fine so they said he could go home. They told us he didn't have to go in tomorrow for the blood count test that was originally scheduled, since he got one today, so he should have a week with no trips to the docs or anything. Oct 8, 2006 This past week has been a good week for Spencer. He felt great, and was able to have a completely “normal” week! Echo was happy to have all of “her people” back home! Friday night, Spencer played at the big cross-town rival game in McKinney. (For those of you that don’t know about Texas football, cross-town rival games are sold out games!) This was a definite “Friday Night Lights” game; over 10,000 people! Spencer and Zachary have never been to a high school game that big and loud. They both thought it was pretty exciting! (I know, Midland/Odessa, we have nothing on you, but it was exciting to kind of be back in to that “Friday Night” mode!!) Our team, McKinney North ended up winning (again!) 44-7. Zachary was excited when we were ahead by 30 because “we’ve beaten everyone by at least 30 points!” On Saturday, Spencer got to perform in his first high school marching festival. He seemed to have a great time! He got to see a lot of the area bands perform their programs. I went for most of it, but left when there were still 4 bands left. Apparently, I missed the one that blew everyone away! Spencer came home and said, “Did you see Duncanville?” Which was the last band to perform. He said, “Mom, they took up the entire field! Just their color guard was the size of some of the other bands!” He went on and on about them! It was neat to see him have such a good time! I told him we’re going to have to try to go to a college football game so he can see their half-time show. Our band did get rated a division 1 for their performance. That is the highest rating that is given. He started losing his hair on Tuesday, so he decided to let dad go ahead and shave it short on Wednesday night; he didn’t shave it all the way down since his head was already very sensitive. Between Wednesday night and Saturday, he’s lost a lot of hair. Poor kid, he looks like he got a very bad haircut with all the bald patches! Yesterday, at the marching festival, it turned out to be a gorgeous, sunny day. Bald patches, plus sun equals a little sunburn! Good job mom! It never even occurred to me to put sunscreen on his head! Now he’s probably going to have tan patches on his head when the rest of his hair comes out! Lessons learned! He goes back in to the hospital tomorrow morning for his second round of chemotherapy. Hopefully, he’ll make it through this one as well as he did the last one. They have scheduled him to have an MRI in the morning before he starts treatment. They are watching for changes in the tumor to see if the treatments are having any affect on it. We’ll keep you undated when we find out the results. One final thing for today; Spencer has really enjoyed seeing all the posts in his guest book, (as have the rest of us). Some of you, we have never met; some of you, we haven’t seen or talked to in years; some of you are some of the closest people in our lives; but all of you have lifted us up in ways that most people will never know. Collectively as a family or on an individual basis, each of your posts affects us and shows us your support…for this, thank you. We are blessed that you have touched our lives. Oct 9, 2006 Spencer went in for his MRI this morning about 7 am. They got him in the machine about 8:00 and it took till about 11:45 to get done. Then they went up to the clinic to activate the port and start the saline. After they were there about 45 minutes they called and said the pictures didn't turn out and they had to go back and do it again. They finally got started in the infusion room about 4:00 (they have to do 4 hours of saline before the first treatment) and then got to a room about 5:30 so he will wrap up his first treatment about 2 in the morning. They will be able to start a little earlier each day so by Friday he should get to start morning or early afternoon. There was no change in the tumor on the MRI, but Dr. Leavey said that was not unexpected, originally they had the first scan scheduled for 2 weeks after the 2nd round which would be 3 weeks from now, so we will get another scan then and see how it is then. He said if there was no change then they would only do 4 more rounds of chemo after the surgery rather than the 6-8 that was originally planned. He doesn't want him to undergo any unnecessary chemo, especially if it isn't having the desired effect. Oct 11, 2006 Just got back from the hospital. Took Zachary and 2 of Spencer's friends, Justin and Ashley. It is amazing how much his frame of mind changes instantly as they walk in the room. I think even with all the treatments, no sleep, and general discomfort, the thing he dislikes the most about being in the hospital is missing being at school with all his friends. He laughed almost non stop while they were there. He can tolerate the rest of it but that is the most difficult part of it. Also, his elementary school GT teacher from Oklahoma City, Ms. White, who lives in the area now, came by to see him this afternoon, she had always been one of his favorite teachers so he was very happy to see her. He is still handling the chemo real well so far, mainly just the bad taste and loss of appetite in the evenings after his treatment, but all seems to return to normal by the next morning. He still has a little stubble on the top of his head, and he is about to get a few weeks off from the chemo for the surgery and recovery time, so he may not have to go completely bald before it starts growing back. So, all things considered, it has been a pretty good week. His room number is 418 if you want to send him an email at the hospital, the link is in the Sept 20th update. Oct 13, 2006 Round 2 of treatments is almost done. Just a little bit of nausea that was taken care of with the zofran, and a little bit of loss of appetite at times. He is set to be released about 7pm tonight. Overall seems to have gotten through the week pretty well. He will go in for Blood tests on Monday and the next set of scans is set for the 30th. Oct 14, 2006 Spencer got home from the hospital last night about 9. Had his first bout with the nausea this afternoon since he started the process, It was relatively minor and passed quickly, but looks 100% better than he did this morning. Hoping the blood counts stay up this time, he has a game Friday and another marching festival on Saturday. He is on fall break so no school Mon and Tue so at least he will get to rest up some before going back to school. Oct 20, 2006 8:00 AM Spencer woke up with a low grade fever again this morning. We are on our way back to the hospital. I’m not certain at this moment if they will admit him, but based on our experience, his counts are probably very low at this point, and because of the low-grade fever they will want to run cultures to make sure there are no infections. We will keep you posted. Zachary has come down with something. We think it’s probably just allergy and sinus problems, his strep test has come back negative, so hopefully we can get him cleared up pretty quick. Spencer has lost the rest of his hair, but already has peach fuzz, probably from the first two weeks off. That will probably start coming out real soon. He actually looks pretty cute! His scans are set for Thursday evening. (October 26th) We don’t have an appointment set for results yet. We have an appointment set with Dr. Maale on November 7th. Nothing else confirmed or set at this point. We will keep you posted on this as well. I have a special request today if you don’t mind. While you are sending out your thoughts and prayers for Spencer, I’m asking that you please send one out for my parents. Rhonda's father just started radiation and will soon begin chemotherapy for lung cancer. I know (and many of you know) the whirlwind of a new diagnosis. I don’t know that the schedules or lack of them get any better or you just learn to handle it, but I know it takes strength and energy, and this is what my prayer is for them-the ability to handle each moment as it comes. 1:00 PM Rhonda just called and he is definately being admitted. They haven't given us an ANC number yet, but last time he was admitted a couple of weeks ago his white blood count was at 0.6, this time it is at 0.4 so even if everything else is at 100% his ANC will be below 500. He doesn't feel bad so we are hoping he has no infection, but will have to be in for at least 48 hours waiting for a negative culture and if it is positive it could be longer. They don't have any beds available yet, so they started his anitbiotics in the oncology clinic on the 6th floor and the treatment room is full, so they have him in one of the side rooms until a bed comes open upstairs. We will update again as we get more info. 4:30 Rhonda just called and said his ANC is at 0. So he will be there through Sunday night as long as the cultures come back negative. Her and Spencer were also able to talk to the head of prostethetics from Scottish Rites at the CONC clinic while they are waiting for a room and he started talking about what kind they would put on him depending on what his level of activity was. He started talking about running and marching in the band and they got confused and said Spencer hasn't run in about 6 years and the Doc said they are planning on him getting to the point he can run with the prosthetic. This is more than we ever expected, but they sound pretty positive about it. Right now the amputation is tentatively scheduled for Nov. 8th. Could change, but might not know until we see Dr. Maale again on the 7th. Oct 21, 2006 Spencer seems to be doing fine today, just bored. His ANC count has come up to 95. They wont release him until it gets to at least 500. He is not running a fever today so we are anticipating negative cultures. If it goes like the last time he should be released sometime tomorrow. The last time he went from 6 on Fri to 358 on Sat to 4000 on Sun, so if he takes the same big jump as 3 weeks ago we should be fine, he is just starting a little lower this time. Oct 22, 2006 Looks like Spencer is coming home today, I think his ANC was around 1700, but don't remember for sure. Oct 27, 2006 Spencer went for scans yesterday evening and we had an appointment with Dr. Maale today to get set up for the surgery. Dr. Maale said that based on his view of the MRI, it looks like there has been a reduction in the tumor from the Chemo. This is just preliminary and we won't have official results until the are studied by the radiologists, but if it has shrunk, that is great news. The Surgery is still tentatively scheduled for Nov 8th. This could change but we wont know if it has to be rescheduled until about 5pm on Nov 6th. If it has to be rescheduled it will probably be that Friday the 10th or the next week. We go in for a CT of the leg and a bone scan next Monday. Spencer's band got a division 1(superior rating) at UIL marching contest on Wednesday, he was pretty happy he got to perform with them for that contest, as he missed the HEB marching festival Sat while he was in the hospital. Tonight we play Lake Dallas who is also undefeated this year, so winning this game will guarantee a spot in the playoffs and we hope he is recovered enough from the surgery to march in those games. Oct 28, 2006 Yesterday Spencer got to go see his Physical Therapy team (his other family). He hasn't been doing any therapy since the treatment started, so he hasn't been able to see them much. He was very happy to see them and while he was there they gave him some gifts from the Dallas Cowboys that they had arranged for him. He got a copy of The Dallas Cowboys Official Team Bluebook signed by Drew Bledsoe. A Cowboys Calendar. The month of August has a side by side picture of Drew Bledsoe and Tony Romo that they had both signed. But I think the thing he liked the best is a group picture of the Dallas Cowboy Cheerleaders that says "To Spencer, Wishing you the best" and signed by 6 of the cheerleaders. Spencer and Rhonda really enjoyed seeing them, we have been seeing them every week for so long, we have really missed them the last several weeks. Our Team won the game 47-22 so they are still undefeated and guaranteed a spot in the playoffs. It means more early morning rehearsals, but if they make it to the second round, that game should be in Texas Stadium and he would get to march with the band there. Oct 28, 2006 PM Spencer had a great day today. The Make A Wish Foundation had contacted us about Spencer making his wish a few weeks ago and we will be meeting with them next week to start the process. Then they called us about a week ago to let us know they were having a function with the LG Action Games Extreme Games World Championship that was being held here at Reunion Arena. (click here to see the web page about the event) It was going to be a lunch with some of the athletes for about 15 of the local Make A Wish kids. We got there about 10:30 and they gave everyone t-shirts,then they took us downstairs to tour the dressing rooms, VIP Lounge, etc... then out to the floor of the arena where the street course and vert ramp halfpipe was set up. They got them sat down by the vert-ramp and brought out Tony Hawk, Mat Hoffman, and Bam Margera and about 8 of the other top competitors for the world championship. After they introduced all of the guys the kids got to visit with all of them and get autographs for about 30 minutes. All of the guys were very nice and had conversations with all of the kids and their families. Then they all went to the vert-ramp and did an exhibition for all of the attendees. They each took about 5 or 6 turns on the ramp and performed for about 30 minutes just for our small group. Some of the kids went up to the top of the ramp to watch and Tom Stober let one of the kids ride his BMX bike. Then all of the kids and the athletes got in the middle of the vert ramp for a group photo for the TV stations and the press. After they got everyone off the ramp, they lined all of the kids up and Tony, Bam, and Mat sat at a table and all three of them autographed a pro skateboard for each of the kids and they gave one to Zachary as well. We went back upstairs with all of our gear and they fed us lunch and told us they had reserved everyone a section in the arena for that afternoons prelim competition and gave all the families tickets for this evenings session and for both sessions of the finals on Sunday. Both of the boys had a once in a lifetime experience and left grinning ear to ear. Even their Ancient Dad here was a little excited when I got to shake Tony Hawks hand and visit with him. I have put some photos of their day on the Photo page. click here to go directly to the photo page Oct 31, 2006 PM Spencer went for more scans yesterday and to get the results of the scans on Thursday. Dr. Leavey told us that the radiologist could detect no change in the tumor in the knee and that they detected some spots in the lungs. They won't know for sure what the spots are without a biopsy, but don't want to do it with the other surgery coming up. He told us what we will do for know is just keep an eye on them. They were basically undetectible on the previous scan but appeared to be 2mm on the previous scan and 3mm on this one. He also said we would start chemo again about 2 weeks after the surgery next week. Nov 4, 2006 On Friday, (November 3) we received a call from Dr. Leavey. After discussing Spencer’s case with several colleagues, the consensus seems to be that we need to proceed with the biopsy of the spots on the lungs. What that means is that as of this moment, the surgery of the leg has been postponed. Dr. Leavey asked that we come in to discuss everything on Tuesday, (November 7) so…we will go talk with Dr. Leavey on Tuesday. I wish we could tell you more, but at this point, we just don’t know. One thing I do know…all of Spencer’s doctors and surgeons need much guidance and wisdom as they try to make the decisions of what is most important. Nov 7, 2006 We met with Dr. Leavey today. He told us he wanted all of us to “discuss” what the options were at this point. He told us that after discussing Spencer’s case with several colleagues, the question came up about the necessity of treating the primary tumor now (with the amputation) if what is in the lungs turns out to be cancerous, because, “if the spots in the lungs turn out to be tumor, we don’t have a good chance of curing this.” We are unable to do a biopsy to determine what the spots are because of the size but we have to assume they are tumor. Right now there are 3 spots and they are 3mm’s. In order for a surgeon to go in and determine what they are, he would have to be able to find them. Dr. Leavey said the lungs are like a sponge, the surgeon would have to go to the area Dr. Leavey tells him to go to, but then would literally have to feel for them and it would be like feeling for a pebble in a sponge. It would be very difficult at this point and it would be hit or miss. We need to wait until the spots are around 5mm’s for a surgeon to be able to locate them definitively. So at this point we have no choice but to wait and watch on the lungs. That brings us to the leg. Basically, on chemotherapy, the tumor in the leg is not growing. Dr. Leavey said we have less than a 1 to 2% chance that on chemotherapy it will grow or cause further damage while we wait for the amputation. He said he doesn’t believe that leaving the leg on for another 6 weeks is going to make a difference one way or another, and if the spots are indeed tumor there is no healing benefit to taking the leg at this time, basically the only reason to take the leg is to prevent metastasis and we are working under the assumption that it has already metastasized so there is no immediate benefit to taking it, so the choice was up to us on whether or not to proceed with the amputation. We won’t be able to look at the lungs again for 6 weeks. In the meantime, Dr. Leavey would like to try the Adriamycin again. This is what Spencer had the low dose of in the very beginning 2 years ago. Synovial Cell Sarcoma has been known to respond to it, but nothing shows that it responds any better than the Etoposide and Ifosfamide treatments. We asked about clinical trials, and Dr. Leavey told us that at this point we look at all options. I asked if there are any clinical trials at the moment that are showing anything positive for Synovial Cell Sarcoma, Dr. Leavey said “No.” He said he believes the Adriamycin is our best bet. If we reach the point where we know for sure that the spots are cancerous and they are large enough, they will then attempt to remove them surgically but there will be an 80% chance for reoccurrence in the lungs after that. He said that is because they are probably already there, but we just can’t see them yet. We asked Spencer what his thoughts were. Spencer believes this is like a science experiment. We don’t know what is in the lungs, but we definitely know what is in the leg. If we amputate, we have nothing to watch, nothing definitive, to see if the Adriamycin is working, because even though the chemotherapy may affect what is in the lungs, at this point, we don’t know what that is, so we have to watch what we know. He believes we should wait on the amputation to see if the Adriamycin has any affect. We have chosen to do what Spencer wants. We will go in tomorrow, Wednesday, November 8, and Spencer will have an Echocardiogram (Ardriamycin has a tendency to affect the heart). We will then go to the treatment room and have his first treatment, and then another treatment on Thursday. He will then have 2 weeks for his body to recover, and then go back for 2 more treatments followed by 2 off weeks again, and then on December 11, Spencer will have his scans again to see if there have been any changes, and we will be ready at that point to proceed to the next level, possibly biopsy, possible amputation. This is a lot, we know. There is a part of us that believes for some reason waiting to take the leg is a blessing in disguise. We can’t quite put our finger on it, but it’s a feeling we have. Nov 9, 2006 On Monday night, Spencer’s Make a Wish - wish granters, Beate and Patricia arranged for Spencer to have a pre-surgery party at Brooklyn’s Pizza. (As you all now know, we found out the next morning that the surgery has been postponed while we battle some other issues) They had asked him at a previous meeting what his favorite food was and he said Brooklyn’s Pizza, so they called Brooklyn’s and the owners agreed to have a party for Spencer and 25 of his friends. When we arrived the district manager, Andy, gave Spencer a Brooklyn’s shirt and cap and a coupon for free pizza for a year. They had a large area set aside for us and as soon as we sat down, they started bringing out pizzas. The kids of course ate way too much, but they kept bringing pizzas until everyone stopped eating. The founder and owner, Marty and his wife Freida spent time mingling with everyone. Marty is a true Italian New Yorker and is quite a character. They and Andy were very generous and incredibly nice and went out of their way to make this a great night for Spencer, and it definitely was. Beate and Patricia also brought a gift for Zachary, a Brooklyn’s cap and shirt for him, and some movie tickets. Everybody had a great time and Spencer really enjoyed spending the evening with his friends in his favorite place to eat. We also want to thank everyone who came for making this such a special night for Spencer. I have also posted some pictures from this on his photo page. Nov 11, 2006 I realized we haven’t posted anything about how Spencer’s first treatment with Adriamycin went this week. Spencer is doing very well. He had one treatment on Wednesday and one on Thursday. These treatments are a little different, he doesn’t have to be admitted to the hospital to receive them, so we get to come back home after treatments. He still didn’t go to school after them, I believe he doesn’t want to chance the nausea and possibly getting sick at school, so he’s been trying to finish up a book for a project at school. On Monday, we’ll go get his blood counts checked, and truthfully, I fully expect him to end up in the hospital on Wednesday or Thursday from a slight fever with low blood counts. This seems to be his “trend” one week after treatment, so we will have our bags packed and waiting to go! I apologize for the lack of an update. This has been a roller coaster week for Gary and I. In all honesty, we’ve allowed ourselves to go too far into the future instead of staying in the moment. Needless to say, but that is not a good thing for us to do. I’ve spent countless hours on the computer trying to find that “new cure” that maybe our doctors haven’t heard of yet, trying to find stories that give us “hope”. On Thursday, I asked Dr. Leavey what I could do to be more proactive in this fight, he told me I am doing the most I can do, I am being Spencer’s mother, I am bringing him for his treatments, I am taking care of him like I should. But to me, that wasn’t enough, I needed something more, I needed something to fight, I needed something more to hold onto. Late Thursday night, after searching on the internet again, I found myself reading through Spencer’s journal entries on this site. I realized that my story of “hope” is living in this house with me. My story of hope is Spencer. How many “impossibles” has he been given that he has already overcome. One of the biggest ones being that he would never be able to bend his leg more than 30 degrees and that he would never be able to use it again without a brace or crutches. In September, I was sitting in a conference when I saw a physical therapist from UT Southwestern. She said, “This is so funny, we were just talking this week about this kid that doesn’t have a knee, doesn’t have a quad to speak of, and yet is walking without the aid of any crutches or braces.” Spencer was the subject of a conversation amongst a group of people that had never met him, because he was doing “the impossible.” To us, it had just become a normal part of our lives. “This is Spencer, of course he is walking again.” Yet, as I looked back over the entries, I remember being scared for him back then, wondering what his life would be, wondering if the right decisions had been made back then, wondering, questioning… I have to remember, “this is Spencer”, I have to try to stay in Spencer mode where these are the challenges we face, these are the challenges we conquer. It’s that simple (isn’t it??). The phrase, “and the children shall lead them” comes to mind as I write this. It’s quite pitiful, the parent is supposed to be the strong one, here I am trying to follow Spencer and Zachary’s lead. I did get my fight that I could win…the trees and bushes in the front yard…all trimmed and shaped (some quite bare!!) . I want to share something with everyone. Many of you know I have always had great faith. Sometimes it is tested (maybe that’s an understatement), and there are those of you that know my faith has been shaken a bit lately and I’ve been a little “lost” as what to do, something I don’t know that I’ve ever experienced. I’ve been trying to “go through the motions” of faith, but truthfully, I’ve still been a little lost. Many of you know I try to read a devotion book everyday. Today this was the entry: “Looking back you will see that every step was planned. Leave all to Me. Each stone in the mosaic fits into the perfect pattern, designed by the Master Artist. It is all so wonderful! But the colours are of Heaven’s hues, so that your eyes could not bear to gaze on the whole, until you are beyond the veil. So, stone by stone, you see, and trust the pattern to the Designer.” It’s the little signs I have to remember to watch for. Sometime life gets so big that we tend to forget that we have today, we get so wrapped up in the future that the past and the present fall to the wayside. The sad thing is, the future for a lot of us seems too big to handle, therefore we can get caught up in the “hopelessness” of it all. Monica (my niece) wrote this in one of her guest book entries: “You are in the prayers and thoughts of myriads of different religions and languages. The world is a tighter community than we like to think. Hope is overwhelming.” Faith, Hope and Trust. Three words used everyday by so many people. I can’t tell you how many times I’ve used these words, “you have to have faith”, “you have to trust everything is going to turn out ok”, “there is always hope”. As I’ve read through all of the Guest Book entries, all of these are there. We are reminded of faith, hope and trust through all of your entries. We are reminded, there are countless numbers of people out there lifting us up through the dark days we will sometimes have. Your thoughts and prayers, whether entered into the Guest Book or not, your thoughts and prayers help us get back to “Spencer mode”. Nov 18, 2006 Has been a few days since we have posted anything, but the good news is, that is because things have been going pretty well this week. Blood counts were good on Monday, and no fever yet, so we are hoping to get good counts again on Monday. Our football team's playoff game was Friday night. We lost to the number 1 team in the state, but hung in there and traded the lead back and forth all night but fell a little short at the end. Final 35-31. Spencer was able to attend the game and perform and although he didn't get back home until about 1 am, he doesn't seem too tired today. Pretty good week all in all, will try to post an update on Monday after we get the counts. Nov 27, 2006 It’s been a pretty uneventful time. The times we enjoy now, more than ever before! Gary made it thru Thanksgiving at the store, now time to gear up for the Christmas Rush. We spent Thanksgiving here at home and the boys and I went to Amarillo for the weekend. Spencer was scheduled to start his second round of Adrimyacin today, but when they checked his blood counts, they were too low, so they will have to wait until next Monday to start his second round. Because of the delay, his scans will have to be pushed back also. Dr. Leavey doesn’t like to do scans right before the holiday season, so we will try to get in two more rounds of chemotherapy before Christmas, and then as it stands right now, Spencer’s scans will be on January 3. We are debating on keeping him from going to school while his counts are low. Tough decision since he will miss days on the week of chemotherapy, but we know his counts are extremely low, so we don’t want to risk him catching something at school (and he’s not too fond of the idea of wearing a mask to school!!). So far, keeping him home is winning out! I’ll arrange to pick up work from school so he doesn’t have a ton of makeup work to do. Otherwise, we’ll keep an eye out for fever and take him back in on Monday for his second treatment. Dec 4, 2006 Spencer started his 2nd round of the new chemo regimen today. His blood counts were at around 1600. He feels fine so far and felt good all last week. he will go in for his 2nd treatment tomorrow morning and as long as he still feels fine will be back in school on Wednesday. Dec 8, 2006 Just wanted to let everyone know that Spencer was able to go to school Wed, Thur and Fri. this week after his Chemo treatments on Mon & Tue. So far he seems to feel fine and has had very little nausea. I think he finished all of his makeup work today and is caught up now after being out of school for almost 2 1/2 weeks. We are unsure of when his next treatment will be, Originally it was scheduled for the 18th, but that only gives him one off week in between and we don't think they do treatments the week of Christmas, so it may not be until the week of the first. Will let yall know when we get the updated schedule from the docs. Dec 17, 2006 Spencer's blood counts were good last Monday and he felt really good all week. He went to school all week and will go in for new counts in the morning (Monday). I promise I will be quicker with the update this week, just doesn't seem like there is enough time in the day anymore. After his blood test tomorrow he will go to school to tackle his semester finals the rest of the week. Dec 17, 2006 Twas the week before Christmas and this family of Taylor Are counting their blessings from the months before. While we are battling a disease that we intend to thwart We have been blessed with some of the most amazing support. Our incredible families have stuck by our side Which has caused us to be filled with such tremendous pride. Prayers have flowed from the folks with whom we worked Because of them, if we were down, up we were perked. We have online friends that were strangers before, I don’t think it would be possible for them to do more. From Rotary to Make a Wish making such a fuss, Seems our entire town have rallied around us. I wish I could mention each and everyone by name, But it would take too long and we still love you all the same. With this much prayer and support that we daily receive, That we will beat this cancer is what we are required to believe. For what you all have done for us, we hope you all know How much we love you, and are mindful of the debt that we owe. So before this year past has begun to fade away, We thought it important to you all that we say, That the blessings you have given us have been such a delight, We wish a Merry Christmas to all, and to all a good night. Dec 17, 2006 The hospital called last night with the results of Spencer's blood work. His ANC is at 310, and his white count is at 1.4. They told us that we didn't have to bring him in unless he started to run a fever. So far he feels fine and hopefully it has bottomed out and is climbing back up. He has finals this week so we decided to let him go ahead and go to school. Jan 4, 2007 We know it has been a while, but really hasn't been much going on except the holidays which has had us very busy. We got the decorations down and are about back to normal. Spencer had his scans on Tuesday the 2nd and we will see the docs on Monday the 8th to get the results. He had a leg MRI and a chest CT. We will let everyone know what we find out after the appointment on Monday. Jan 8, 2007 Here is the info from our visit with Dr. Leavey today. The good news is the tumor in the leg has not grown, but the bad news is the tumors in the lungs have grown and there are more. We asked him what more meant and he said numerous. The largest are at 4mm. We asked about a biopsy and he said that because of the growth, it was unnecessary because with the growth it is a certainty what they are. There is no surgical option at this time because of the number of them and the size, and he would only be getting the ones he could see and wouldn’t be able to get the ones that he can’t see at this point. We can try radiation, but because we are dealing with Synovial Sarcoma we need very high doses of radiation and the lungs don’t handle that high of a dose of radiation well and he said it would require low dose radiation to the entire lungs and then what he called “boosters” of high dose, targeted radiation to the actual tumors, but that would be difficult and probably not effective and would probably damage the lungs. He thinks we should not try that at this time, but keep it in our back pocket in case we need to in the future. Then he laid out what he considered our 4 viable options at this time. Option 1 Phase I clinical trials. These are trials to determine the dosage and safety of drugs that have been proven to be effective in adults but they don’t know what will be the most effective dosage that causes the least amount of safety concerns in children. They haven’t been proven to be effective with Synovial Sarcoma, just lung mets in general. Because Synovial Sarcoma is so rare, there are no specific clinical trials just for it, so we have to go with the next closest thing. Option 2 Phase II clinical trails. These trials are for experimental drugs and finding out if they can be effective in treating lung mets. The dosage and safety concerns have already been determined in the Phase I trials, and now they want to see if they work in the determined dosage. Option 3 Off Protocol. These are drugs that they have had some success with in treating Sarcoma lung mets, but not specifically for Synovial Sarcoma. He told us about 3 drugs or drug combinations that we could try. Option 4 Do nothing to avoid the damaging effects of the treatment and let the cancer take it's course. We probably won’t make a decision about which option to start with until later in the week, so we can begin the new treatment early next week. Dr. Leavey is recommending Phase I clinical trials. He has basically two reasons for this. With clinical trials, sometimes the door is open and then it is closed, and you are limited on the number of clinical trials you can do based on other treatments you have had and we need to try them while the option is there. He also thinks that although they have had some success with some of the off protocol treatments, he doesn’t think they will cure Spencer. Even if they get rid of the tumors for now, they will likely come back based on the history of these drugs with sarcomas. He thinks going in to Phase I could give us a drug that might “cure” him and that is what we need to be looking for. With the off protocol treatments, we can try those at any time if none of the clinical trials work and there is no downside to waiting. The downside to Phase I trials is that you don’t know the dosage you will be getting and we can’t pick the group we will be going in to. For example, if there is 100 people in the trial, they could divide them into 10 groups of 10 and each group will get a different dose ranging from very low to very high. If you get put in the very low group, you may not get the effect you want, and if you get into the very high group the side effects might be bad. At this point there is an upside and a downside to whichever option we chose, but we will decide what to do in the next couple of days. We know we will probably be scanning monthly and making decisions about continuing with the current treatment or moving on to another one after each scan. We asked about the amputation of the leg and he said unless we find something that could potentially cure the cancer there is no beneficial reason to take it and taking it prior to that would only cause a delay in the treatment. As soon as we talk to Dr. Leavey about our decision we will post the plan for our next course of treatment. Please continue to pray that we make the best decision for Spencer and pray for our boys. Jan 12, 2007 We called Dr. Leavey and requested admission into one of the Phase I trials. Our first choice was Sunitinib and our second was Surafinib. These are a little different type of Chemo as they are what they call tyrosine kinases inhibitors, which basically means that instead of trying to kill the cancer cells they bind themselves to the these receptors to prevent the activity of the growth factor in terms of cell stimulation. Dr. Leavey says it is like turning off a light switch that makes the cancer cells grow, we just have to find out how many switches Spencer's has and find out what turns them off. Because Spencer’s cancer has been found to be chemo resistant, this is hopefully a way to ease that resistance. Both were primarily developed as a treatment for renal cancer, but they have been found to be somewhat effective in adults with small cell lung carcinoma. If you want to get more info about these two chemo’s click here for Sunitinib and click here for Surafinib. The trial is designed to determine the best dosage with the least amount of safety concerns in children. Dr. Leavey called today and asked that we come in Monday for an echo and an EKG, but didn’t discuss the trials with us. We are assuming that this is part of the process to get us enrolled in one of these trials, but should get all of the information on Monday and will let all of yall know what we find out after that visit. Jan 15, 2007 Spencer has been enrolled in the Phase I clinical trial for Sunitinib. All of his tests were fine today, and he will go in for a baseline MRI on Wednesday and be given the pills. He will take one pill a day for 28 days and then go back for more blood work and another MRI. He will then get 14 days off and then start a 28 day cycle again. He can be in the study for up to nine – 28 days on and 14 days off cycles. If at any time we feel like the treatment is not effective or the side effects become too severe we can opt out at any time and move to a different trial or an off protocol treatment. The way this drug is supposed to work is to stop the growth of new blood vessels in the tumor, hopefully choking away its lifeline. It has been shown to have some effect in adults with advanced kidney cancer and gastrointestinal stromal tumors but has been used on very few children until this trial. The side effects are not much different that the other chemos Spencer has taken, some less severe, some a little more severe; although the goal of this trial is to determine the side effects in children and may be completely different that what is anticipated. One interesting side effect is “lightning/discoloration” of the skin and hair rather than “loss” of hair, so he may get a head of hair back, just don’t know what color it will be, I’m kind of hoping for “light” green. We will do our best to keep you all updated with any developments throughout the next 28 days, but if nothing is posted for a few days, it means there is probably no change or nothing exciting going on. On a side note, Make A Wish set us up to go out to dinner at Joes Crab Shack last Thursday. The dinner was great and they really went out of their way to make sure we were comfortable and had a great time, then on Sunday they arranged for him to take a few of his friends to a movie theater called Studio Movie Grill. It is a movie theater where you go in and sit at a table and order dinner, then after they serve your food they start the movie and then continue to serve you throughout the movie. They went to see Curse of the Golden Flower. They had a really good time, but because of the ice storm the power went out 15 minutes before the movie ended so they didn’t get to see the end of it, still a good afternoon at the movies for them. Jan 19, 2007 Spencer started his new treatment of Sunitinib yesterday. He will take 1 pill a day for 28 days and then will be off for 14 days. We believe we will scan and reevaluate after the first treatment cycle, but might do 2 cycles prior to scanning and deciding whether to continue this course or start another. Too early to tell what the side effects might be, could be a week before we see any reaction to the medicine. Not much else to report other than we are now back in the treat, hope, and wait mode. Posted a couple of new pictures of the boys at their Christmas Concert over on the photo page if yall want to go over and take a look at them. They are at the bottom of the page. Jan 28, 2007 Nothing really new to update at this point. Spencer has had no ill effects from the Sunitinib so far. He went to school all last week and felt fine. His hair is starting to come back in, actually had to make him shave his scraggly beard and sideburns yesterday, he might even be ready for a haircut in a few weeks. Will try to get a picture posted of him in the next week with the new hair. Looks like he has a boot camp haircut right now. He is going for blood tests tomorrow and his weekly clinical trial check up, if we get any news we will get it posted. Feb 2, 2007 Spencer's blood counts were fine on Monday. He does have a sore in his mouth that the docs saw, but Spencer said he didn't know it was there and it wasn't bothering him. His lips are dry and cracked, we don't know if this has to do with the Sunitinib or not but the docs said to report anything that is different. We will go back in Monday for another checkup. I do have a new picture posted of him with the little hair he has as of Monday, it has gotten even longer and thicker since then, but appears to be lighter, will be hard to tell till more comes in. On a sadder note, Rhonda's father, Shelby, was placed in hospice on Wednesday morning to control his pain and they have asked the family to come in. Please say a prayer for Rhonda, her family, and ours as we all go through this. Feb 5, 2007 Overall everything was good at the checkup today. Haven't got the official blood count numbers yet, but if there is anything that is low they are pretty quick to call and let us know. He did develop a rash this morning which Dr. Leavey said is not unusual for this drug. He told us to monitor it and if he had any trouble breathing, itching or if he developed a cough to call them so they could decide what to do about the drug. The rash was from his elbows to his shoulders, splotchy on his chest, and pretty much covering his back, but had mostly gone away by this afternoon. On Sunday Spencer's Make A Wish - wish granter took him out to fly his plane. They took off from the airport here in McKinney and flew north over the Red River and Lake Texoma to Ardmore, Oklahoma, then back here to the airport. Spencer was "Pilot in Command" from immediately after takeoff all the way until just prior to landing and did all of the flying while in the air. When I spoke with his wish granter after they got back, he told me Spencer did a great job of maintaining course and altitude, and banking and turning the plane. I have posted some pics from the experience on the photo page. Feb 13, 2007 Spencer went to the doc yesterday for an echo and an EKG and it looks like they were all fine. He will go in tomorrow for scans and blood counts. Tomorrow will be the last day of this part of the clinical trial and we don't know when we will get the results of the scans yet, but think it will be in a couple of days. If the scans show any improvement, we will do another 28 days of the Sunitinib after a 14 day rest, and if not, we will drop out of this trial and look at the next one with a 21 day rest. While we were in Amarillo this weekend, the boys Uncle Ken along with a couple of us built a tomahawk target out of some scrap wood and Ken taught the boys how to throw a tomahawk. I have posted a couple of pictures on the photo page of them throwing. We also have the dates set up of the trip to Italy. We will leave Dallas on May 24th and arrive in Barcelona, Spain on the 25th. The ship will sail at 7:00 PM on the 26th and will arrive back in Barcelon in 7 days. Click here to see some info on the cruise we will be taking They are still working on the specific excursions we will be taking each day, will post more on that as we get the information. Feb 15, 2007 Just a brief note, Dr. Leavey called today and said the tumors in the lungs have progressed according to the scan results, so the sunitinib has not been effective. We are scheduled to see him on Monday to decide what our next step is. Will hopefully have more information on Monday. Feb 19, 2007 Well, we met with Dr. Leavey today and got the latest info. As he told us on the phone the tumors in the lungs have progressed. There are many of them now and the largest are 7mm in size. He suggested to us what he thought were our two best options at this time. One would be a Phase II clinical trial of Oral Cyclophosphamide and Oral Topotecan. The other option would be an off protocol treatment of the Topotecan with Cyclophosphamide and vincristine. The Phase II trial would be pills he would take - one in the morning and the other 3 hours later. He would take the pills for 14 days and then have 14 days off. After 2 of these 14 on and 14 off cycles, he would be scanned. In the off protocol treatment he would do treatment for 5 days and then take two weeks off. They would be through his port and he would have to do them in the clinic. He wouldn’t have to be admitted to the hospital like he did with the Ifosfamide and Etoposide, but the treatments would last for several hours due to the Mesna and fluids they would have to give him before, after, and in between the drugs. We haven’t decided which one to do yet, Spencer is leaning towards the clinical trial, as it would be much easier to manage with the pills and not having to go to the hospital everyday during the treatment. We think there may be an advantage in going with the additional Vincristine at this point rather than trying the trail and then switching over and adding the Vincristine later if the trial turns out to be ineffective. With it being a Phase II trial as opposed to the Phase I we did prior, we will be getting what they believe to be a safe dose, they just don’t know if it is an effective dose, or if it is effective for his type of cancer. With the phase I you may be getting a dose that is too low or too high, so with this we would likely be getting a dose that would have an impact if it proves to be effective. We will visit about it some more and should have a decision made by Wednesday and will give Dr. Leavey a call and let him know. Whichever way we decide to go, we will probably begin treatment on the 5th or 12th of March, we are hoping to start on the 5th so that he will be at the end of a 2 week off cycle when the trip begins in May so that he will hopefully feel well enough to go. The names of the drugs that are highlighted and underlined above are clickable links, if you want to read more about any of them, just click on them to be taken to a page describing the drugs in more detail. Feb 23, 2007 Just wanted to let everyone know that, per Spencer's wishes, we have decided to go with the Phase II clinical trial of Oral Cyclophosphamide and Oral Topotecan . We can always go to the infusion of those two drugs with the addition of the vincristine if we see no results from this trial. We should start on the 5th or 6th of March. It will be 14 days on the medication and 14 off, and we will likely wait until the end of the second cycle to scan again. Mar 5, 2007 Nothing much going on at the moment. We were supposed to start the new trial tomorrow, but Dr. Leavey has suggested that we start after the boys get back from New York. Oh yeah, guess what, the boys are going to New York. They are flying out on Thursday and coming back on Tuesday. They will be staying with their cousin Monica while they are there. She works at the Museum of Natural History and her and some of her colleagues will be giving them the grand tour of Manhattan. They are very excited and have made lots of plans for what to do while they are there. But Dr. Leavey said that most of the kids are having a rather difficult time with the side effects of the new drugs he will be taking and he didn’t want Spencer to be sick while he is on the trip, so we will begin the new treatment when they get back on Wednesday. We will have them write up a little story about their trip after they return to post here. Had a little scare with the new medication last week. When the pharmacy ordered it our insurance company denied the claim and our pharmacy told us if we wanted them to order the drug it would be $17,000. That is for 14 doses. We discussed this with our insurance company and after a couple of days got them to approve it, albeit with a substantial co-pay, but at least it is manageable. Will post more when they get back and he gets started with the treatment. Mar 10, 2007 Spencer & Zachary sent a few pictures back of their first full day in New York. They are having a great time but seem to be a little overwhelmed. The went to see the broadway show Stomp last night and then went to the Toys-R-Us in Times Square. Will have plenty more pics later as they send more and after they get home and we can load what is on their camera. To get to the photos of New York go to Spencer's main page by clicking on the "home" link at the top of this page, from Spencer's Main page, click on the link for the photos of New York just below the main photo link. When you get to the page with all the small photos, click on the first one and it will enlarge, then if you just click on the right half of the large image it will take you to the next one and you can scroll through them that way. Mar 12, 2007 Got some more pictures posted of the boys in new York. Now when you get there from the link on the main page, click on either of the albums (new_york_day1and2 or new_york_day3and4) to open up either album. Mar 13, 2007 Pictures of their last day in New York are now posted. Mar 13, 2007 The pictures they took with their camera are now posted in the file labeled new_york_theboys Mar 14, 2007 Here is Zachary's summary of the trip to New York When I got to the airport I was already excited. As usual our parents were worried that something may go wrong and were going over everything 4 to 5 times with us. Eventually, though, we finally got onto the plane and just waited. While we were on the plane it seemed like we would never get there. We finally landed in Chicago and they said that even people continuing over to LaGuardia needed to get out of the plane because of some air traffic problem, so as we were getting off the plane we had to explain all of that to our parents. After about 30-40 minutes we got back on the plane and began to taxi over to the runway, then the plane stopped. We just kind of sat there a minute or two and the pilot made the announcement that we were going to have to wait a minimum of 30 minutes for some reason, I forgot why. After a while we took off and I just slept the rest of the way there. We finally began to fly over New York. I looked out of the window and I could see about ¼ of New York. I saw the statue of liberty, and some of New Jersey, as well as just a bit of NY. Once we landed we found out that Monica (our cousin) had been stuck in traffic for about 2 hours (our flight had been late by about an hour, so she was on time). After a little while, though, we had our stuff and were in a bus going back to our cousin’s apartment in Harlem. We rode on the bus a little bit and we got off about halfway there and got on the subway. Luckily it wasn’t too crowded and we happened to get seats. To be honest, I thought the subway smelled like urine and b/o everywhere. Anyway, we got off the subway and walked a little while over to the apartment, which was pretty big compared to others. After we met all of Monica’s roommates we ate some pizza and watched American Idol, then I think we just stayed there the rest of the night. The next day we woke up, got ready, and got our tickets for Stomp. Once we got out of the apartment, we went to Riverside Park where we saw the Soldiers’ and Sailors’ Monument. After we saw that we got on an “accordion bus” and headed over to central park. We looked over to look at the lake and saw that it was frozen, so we took a few pictures there. Once we were done with that, we headed over to the MET. Right when we got in we headed over to the Egyptian exhibit. I thought it was pretty cool to see. They had real cave engravings, tombs, and sarcophaguses. After that we saw the arms and armor exhibit. It had armor from all over the world. It had samurai armor, medieval armor (German, Norwegian, and so on), Medieval weapons (flails, maces, halberds, spears, swords, shields, and so on), katanas, muskets, hand-cannons, and all kinds of other stuff. After we saw that, we went over to the paintings, which I thought were pretty cool. My favorite painting was the one of George Washington and a small army of men sailing through water and ice. It was the size of a huge wall. They actually had chairs in front of it so you could sit down to look at it. Once we had seen all of the paintings, we went over to see Stomp at the Orpheum Theatre. Stomp is an off Broadway musical where a group of people uses improvised instruments to make cool music. They use things like brooms, basketballs, newspapers, and other things like that. If you want to see what it is go to youtube.com and type in “Stomp” in the search bar. After we had seen that, we went to Times Square. The first place we went to there was Toys R Us. I was amazed when we saw the Giant Ferris Wheel that was like 4 or 5 stories tall, and in a toy store. After we looked at that we went down to the lower level and went to the video game section. We were there for like 10 minutes and a guy came in and told us that the store was closing. Once we left there we went over to the ESPN Zone, which happens to be the coolest place on earth. It has a place to eat, an arcade, and even TVs in the bathroom. We were only there for like 30 minutes eating nachos or something. We didn’t get to do the arcade that night, so we just went back to the apartment. On day three we headed over to Ground Zero. After we got off the subway there Spencer slipped and hurt his leg. We saw a bit of Ground Zero and just headed back to the apartment. After we dropped Spencer off Monica and I went to go rent some movies. We rented Little Miss Sunshine, Cars, and The Tenenbaums. After we rented those movies we went over to the movie theatre and bought tickets to go see 300. All of the I-Max tickets were sold out 6 hours in advance though, so we just got the 11:15 movie. After we had had seen Cars and The Tenenbaums we headed over to the movies to see 300. Monica and her roommate were “mortified”. We were pretty excited. The movie, even though it was, in the words of my cousin, “highly inappropriate and unrealistic”, was pretty cool. After we had seen that we went back to the apartment, watched Little Miss Sunshine and went to sleep. On the fourth day we headed over to Chinatown. Once we had gotten there, we began the search for Dad’s Rolex. We walked around looking for all of the stores that sold watches. We finally found one place that had the kinds of watches we were looking for. I pointed to one, asked how much it was, and he said, “$40.” Spencer said he would like this other watch. The one I pointed to, I knew was a Rolex. The one we bought, we figured out later, wasn’t one. Spencer and I got some watches too. They all happened to be Breitling watches (he was okay after a little while). Once we had gotten the watches Spencer started buying stuff for his friends, and I didn’t think we had enough money to buy stuff for all of my friends. He bought 4 hats and 4 little statuettes. Once we had bought everything we went to eat at Hop Kee. I had chicken with vegetables, Spencer had beef with chilies and Monica had fried rice. I didn’t really like the food. I thought it was okay though. After we had eaten there we headed over to Little Italy. We ate some Gelato at a small Italian Café where the owner sang karaoke. After we ate there I bought a shirt and we went to the Empire State Building. When we got in line it was pretty bright out, but after about 1 and ½ - 3 hours of waiting, it was night. We looked around and took a few pictures, and we eventually went back to the apartment. On the fifth day we went straight over to the Staten Island Ferry. We waited a little while and finally saw the statue of liberty. It really wasn’t as big as I thought. Once we left the ferry, we headed over to the American Museum of Natural History. We were in there for about 30 minutes and we headed out to central park where we met Ryan. Ryan is an Irish guy that is a friend of Monica’s. We walked with him for a little while in Central Park and then just kind of dragged him along wherever we went. The first place we went after central park was the Apple Store. We took the elevator down and just looked at all of the stuff you could get for you iPod, iPhone, and Mac. There was a $500 iHome there on sale. I thought that was amazing. After that we headed over to FAO Schwartz. We looked around in there and took a few pictures, then left. It wasn’t like unbelievable or anything. After that we went into the Trump Tower. I thought it would be cool to have enough money to put random golden stuff and jewelry in a gold building. Once we got out of there we went into the Disney store for a minute and headed to the Cathedral. We headed inside and looked around for a bit. It was pretty cool looking. Once we left there we headed back over to Times Square. We bought some chocolate bars at the Hershey Store, and went across the street into M&M’s world. I thought they had too many M&M’s stuff. Also, they charged $6 for a bag of M&M’s. Once we got out of there we went back to the ESPN Zone to play at the arcade. I wasted just about all of my money and ended up playing an extremely competitive game of air hockey with Ryan. I won 2 out of 5 games. After that we ate at Applebee’s left Ryan, and went back to the Apartment. We were dreading having to get up at 4:00 am to get on the plane. We finally left though and I already want to go back. I had a lot of fun in New York. I think I want to live there. Mar 14, 2007 Here is Spencer's summary of the trip to New York The New York trip was awesome. The plane ride there was boring, of course, and I was a little surprised at how small the airport was when I got off. Then we went down to baggage claim and saw my cousin Monica ready to pick us up. We took the bus out of La Guardia (the airport) and then walked to the nearest subway. It was my first subway ride, and it was an experience. It took us near her apartment in Harlem. We had to walk a couple of blocks to get there, but there would be a lot more walking. Once we got there, we went up 4 stories and found her apartment, and then met her roommates. After that, we just stayed there and went to sleep. The next day, we got up and ate some Poptarts. Then we left to go to Riverside Park. It looked pretty cool. I also saw the Soldiers’ and Sailors’ Monument. She had to sort of babysit a boy after that, so we picked him up and took him to another apartment. We walked down to a place called Krusty’s and I ate my first New York pizza. It was, of course, delicious, and huge. We dropped the boy off at his apartment and we left to see the Metropolitan Museum of Art. When we got there, we just walked through the Egyptian exhibit, and the old Armor and Weapons exhibit. Then we left, ate at another pizza place, and went to see the off-broadway Stomp. It was really cool, and funny too. That took a little while, and then we went to Times Square. That was amazing! We walked around there, and went to Toys R Us, and then walked down to the ESPN Zone. After that, we took the subway back to the apartment and slept. When we woke up, I ate two Eggo waffles, and we left to see the World Trade Center site. We took the subway, but after I got off I slipped and hurt my knee pretty bad. We still saw it, and took a taxi back to the apartment. I stayed there and we called it a movie night. We rented three movies and watched two of them. Those two were Cars and Royal Tenenbaums. They were both pretty good. We started Little Miss Sunshine, and then we left to go to the movie theater. We saw 300. I enjoyed it. When we got back we watched the rest of Little Miss Sunshine, which was funny by the way, and then we went to sleep. We decided this day, we would do a whole lot. First we left and went to Chinatown. We spent most of the day there, and we ate at Hop-kee, a Chinese restaurant. I bought a hat for me, and a lot of gifts to bring back for my friends. I also bought dad a fake Brietling watch for $60. We then went to Little Italy and had a gelato in a small Italian café, with the owner singing “That’s Amore.” That was also delicious. We left there and went to the Empire State building. The line to get to the top was leading out of the front door. We waited for about two hours and finally reached the top. I could see the entire city, with lights shining everywhere (it was night by now). Then we waited in line to get to the bottom and get out. We went across the street and ate at a place called Papaya Dog and I ate a corn dog. Another delicious New York meal. We went back to the apartment and went to sleep. What was the one big thing that everyone has to see in NYC? The Statue of Liberty! We left early to go to the Statton Island ferry to take us close enough to see the Statue of Liberty. We took about 10 pictures of it, and then took another ferry back. Of course we took pictures of Ellis Island too. After that, we went to the Museum of Natural History, and stayed there for just a little bit. Then we walked through Central Park and went to 5th Avenue and walked down there. We saw the Apple Store, Trump Tower, Saint Patrick’s Cathedral, and ended at Rockefeller Center. Then we just walked over to Times Square and spent the rest of the night there. We ate at Applebees, and went to the Hershey store and M&M’s World. We played a lot of games at the ESPN Zone arcade and called it a day. I went to bed at 2:00 am, and woke up at 3:30 am. We went to the airport and got our tickets. Zac and I got on the plane at 5:00, and we left. Zachary spent the whole time sleeping on the plane. I couldn’t get to sleep for some reason, so I spent the whole time trying to get to sleep. We landed and our parents were happy to see us. Thus ends another exciting adventure of Spencer Taylor. Mar 19, 2007 Spencer started his new treatment on Thursday. So far he has had no ill effects from the chemo. Several of the kids on the trial have had some pretty bad bouts with nausea, but he seems to be tolerating it well at this point. He is back at the hospital today for his regular Monday check up and blood tests that he has to do on the trial. He was there almost all day on Thursday as the first day of the trial required him to do blood tests every fifteen minutes in the beginning of the day and by the end of the day every 2 hours. Should be going back to school today after he gets back from the doc, first day back after an eventful Spring Break. On a much brighter note, last night one of our wish grantors with Make A Wish offered Spencer an opportunity to go to a Dallas Stars hockey game. Spencer and I met the family that was taking us to the game at a Brazilian Churrascaria called Texas de Brazil. Michelle Paxton, her husband Dan, and their two daughters as well as a couple who were friends of their family had dinner with us and were taking us to the game. Before dinner they brought Spencer an autographed NBA basketball signed by Dirk Nowitzki. The dinner was incredible, we started at the best salad bar I have ever seen, and then the gauchos began bringing 3 foot skewers of every meat you can imagine to the table and sliced off fresh cuts of whichever ones you wanted right at the table. This went on with a continuous line of gauchos at the table until we told them to stop, then they came with the dessert tray. I had unfortunately overdone it with the meats and passed, but Spencer ordered the richest chocolate mousse cake I have ever had and he allowed me one bite. After dinner a Hummer limo was waiting out front of the restaurant and we all got inside and headed to the American Airlines Center for the game. We had lower level seats which gave us a great view of what ended up being a very exciting game. About ½ way through the 1st period Michelle asked Spencer to come with her and she took him down to the Zamboni and he and a few other kids were allowed to ride the fan Zamboni around the ice between the 1st and 2nd periods. On the top of the Zamboni Spencer was sitting beside Kim, one of the Dallas Stars Ice Girls. I asked him how he got to sit beside the Ice Girl and he informed me “she sat beside me”. After the ride Kim and one of the other girls signed a picture of all the Ice Girls for him. Shortly after the 2nd period started, Spencer sent me for some popcorn and a coke which caused me to miss 2 quick goals and the only fight of the night. The 2nd period ended with the Phoenix Coyotes up 3 – 2. At the beginning of the 3rd period Michelle brought Spencer a Mike Modano Stars jersey and cap which he put on immediately. The Stars scored a goal to tie the game and then another to go ahead with about 4 minutes remaining. Shortly after that Marty Turco blocked a potential game-tying penalty shot (truly one of the most exciting things to see in all sports) but then gave up a 5 on 3 goal with under 2 minutes remaining which sent the game into overtime. With 40 seconds remaining in the overtime period, Mike Ribeiro scored to give the Stars the win. It was an incredible game to attend and Spencer had an amazing time. I don’t think I ever saw him stop smiling the entire evening. Before the game Sergei Zubov was honored for playing in his 1000th game and during the game Mike Modano was honored for becoming the leading US born goal scorer in NHL history, so he got to witness a couple of NHL milestones at his first NHL game. We rode in the limo back to the restaurant and then drove home after a long and tiring, but incredible evening. It was a night I am sure Spencer will never forget. I will have pictures of the evening posted as soon as I can. Pictures are now posted, you can get to them from his main photo page. Mar 20, 2007 After Monica read the boys account of their trip to New York, her and Rhonda decided it would be a good idea for her to write up her account of the trip, here it is: Reading the boys account of the trip inspired me to share my experience. I must apologize. I’m not as concise as the boys. Here’s the detailed version: Five thirty. The boys’ plane is due to land in seven minutes. I’m twitching with nervousness and pushing people out of the way to see how I might jump off the bus into a cab. Which I realize is also stuck in traffic. Another time in my life that I deeply regret that cabs – no actually, that I – am without wings. I sprinted at full speed into the correct terminal to find it uncomfortably deserted and the screen of flight arrivals “experiencing technical difficulties.” Six fifteen. Time to panic. The boys finally answer their cell phone. I ask Zachary to describe his surroundings, to see if we are in the same terminal. “Well, there’s a water fountain. A newspaper stand. Men’s bathroom. Spencer has to go. We’ll be right there.” I practiced several different stances sitting or standing on the baggage carousel to look like the calm, collected cousin. I wait. Then, I spy the boys, red-faced, partly from exhaustion battling with excitement, I suspect. And looking far too old for their age! Of course, they are sporting their teenage boy “poker face,” which disguises giddy, embarrassing excitement. (Screaming, jumping around, talking too fast). We all know how un-cool this would be. Apathy is worshipped among adolescent males, I realize. This leaves me to be the over-excited cheerleader cousin. (Screaming, jumping around, talking too fast). Welcome. We ride the bus home through Queens, and then home to Harlem. Almost the instant we enter Harlem, a character that looks like he might be on a movie of Harlem in the 80’s steps on the bus with a mini-radio around his neck playing rap music. I wink at the boys, “Welcome to Harlem, boys.” Brief commentary: please don’t draw stereotypes about Harlem, now. As comical as the boys’ first impression might be, it is not at all accurate. Harlem is a large area that is diverse, interesting, and wonderful (yes, really!) After the bus, the boys experienced the subway for the first time. (Which actually smelled surprisingly delightful, Zachary).We spent the evening with my roommates, television, and junk food. My original plan was to go to the Empire State Building, but we didn’t arrive home until nine, and so decided we should go to bed early. Which, of course, did not happen. We fell asleep after several hours of laughing at ridiculous television programs and YouTube videos. Day one. The next day, I drug the boys along to my nannying job on the Upper West Side. First, we went to see a bit of Riverside Park (the park overlooking the Hudson River). We picked Nimi, the six year old I look after, up from school. I know this part was quite boring for the boys. But, we waited in the ritzy private school and then went to an Upper West Side apartment. Then, the boys and I went out to retrieve pizza. Zachary was shocked at how cheap you could eat in NYC (it’s true!) Especially if you like pizza. Zachary also liked that you could walk everywhere in the city. (And, so, unfolds my plan of slowly moving my southwestern family to the East Coast). Cheap pizza and independence for teenagers! We then went to the Metropolitan Museum of Art. I must confess that I did not allow enough time for this great place because I had forgotten of all of the armor, swords, etc., etc… I did not think the boys would be interested in paintings and sculpture (what I go to spend hours to see). Most of the things we looked at, aside from the Egyptian exhibits, I had never seen myself. Medieval knights, ancient Chinese armor, weapons. The boys were quite engrossed while I studied a subway map on how to get us to the Off-Broadway show. We ate (you aren’t going to believe this) pizza again for dinner. And, then headed off to see Stomp on the Lower East Side. The show was great. As the boys have recommended, you should check out their shows on YouTube. It never ceases to amaze me what people can do with their imagination. We paid to watch, and enjoyed, people banging on the floor with brooms and trashcans. Then, off to Times Square. We went to Toys-R-Us, where the boys promptly refused my pleas to ride the ferris wheel. Apparently, that’s very un-cool. (I would have even compromised the My Little Pony seat). Unfair, really. We then went to ESPN Sports Zone. Where there are indeed televisions in the bathroom. (Truly uncomfortable). I sent Zachary away to confirm to toilet TVs rumor first (with a camera). I realized sending a boy to the bathroom with a camera wasn’t the greatest idea, but he came out alive and unharmed. And thrilled. The boys thought it was great. I wasn’t planning to come back… Day two. New York’s pollution gave us some trouble this day. When it rains, a disgusting filth gathers over the subway floors that cause people to slip. Spencer had a fall and was in quite a bit of pain. So, we cut our World Trade Center site tour short and headed home for a movie day. Which was actually quite enjoyable. We watched three quality films and one disaster. Spencer was feeling better at the end of the night, and so I agreed to take the boys to 300, against my better judgment. So, we went to the late show with my roommate Kristen. We took a cab with a very chatty driver who was entertained by the fact we were Texans. The movie was a plot-less disaster of unnecessary gore and inappropriateness. And, sadly, the number one movie in America. I’m horrified. But, the boys seemed more than elated that they were allowed to view such rubbish, and Spencer tried several times to call his friend Justin. I was tempted to give an anti-war and violence proclamation at the end of the show, but Kristen kept me from any post-movie critique. I held my tongue, kind of. Day three. Off to do some shady transactions in Chinatown. The boys had a mission to get Gary a Rolex. I left them alone to haggle with a man over some watches they selected while I went to find Sarah Jean and Katy (two more of our cousins) birthday gifts. The boys got the watches for cheaper than he asked for. Great job for a first-time deal. We ate some Chinese food (not pizza!) and then turned the corner to go to Italy. We sang along with a delightful old Italian man singing “That’s Amore,” while eating gelato. The boys refused to sing on camera (I guess I was pushing it). Then, to the Empire State Building to wait in a line forever and ever. The view from the top is well worth the wait, though. It’s astonishing how beautiful a mass blur of concrete, lights, and traffic can be from the sky. We were annoyed that we had to wait in a line to get out of the building, though! The boys seemed a bit bored, and I was worried they weren’t having a good time. Zachary then said he’d like to live in NYC in the future. All ok. Mental reminder of teenage boys keeping it “cool.” The boys had some corn dogs at a corner stop. Spencer informed me that the ketchup bottle determines the quality of a corn dog. This was apparently of the highest level. Last day. To the ferry to see Miss Liberty. It was a nice day, but cold on the water. Spencer and I went inside to watch from the window. Zachary braved the cold for a little while longer to get some pictures. We then went to my enchanting place of employment, The American Museum of Natural History, and did a “Spark Notes” tour (in Spencer’s words). We then walked a long ways through Central Park, and met up with a friend of mine. We walked down Fifth Avenue (Ryan, Zachary and I trying to keep up with Spencer in a crowd. Spencer’s mobility in the city was astonishing. Mostly I didn’t notice his crutches until either I, or Zachary, tripped over them…) seeing Trump Tower and other gaudy and ritzy buildings. All agreeing that a sit-down dinner would be nice, we went to Applebees. And then roamed around Times Square some more. Much to my dismay, we somehow ended up back in front of ESPN Sports Zone. My friend, Ryan, seemed keen on the idea of playing games. They all enjoyed themselves. And, I enjoyed Spencer’s and My air-hockey tournament. Which was much friendlier than Zachary and Ryan’s competitive, sweaty, endless match. We then rode the subway back home for packing and a few hours of sleep. The boys got into a conversation that my roommate and I were having about dating. Spencer, hilariously enough, called me George (from Seinfeld) since I have too many rules for dating. I’m still not living this comment down among my roommates, who have shared this with my other friends. Thanks, Spencer. The boys went to sleep about midnight. At four that same morning, we were in a cab to the airport. I was worrying that we would be late, but everything worked out. And, I kept my cool until they were on the plane. Oh, but I do miss them. So, again, I propose that the family move north. Or, at least, send the boys back again soon. Thanks to all who made this trip possible. We made some irreplaceable memories. Thanks, most, to Spencer and Zachary for coming. I love you guys. Pictures are now posted, you can get to them from his main photo page. Mar 22, 2007 If you want to see some better pictures of Spencer on the Zamboni you can click here. When you get to the image you will see a green rectangular box above the upper left of the photo. Click next in the green box to scroll through some more pictures of him. April 5, 2007 We apologize for the delay in getting a new update posted, but there really hasn’t been much to update lately. Spencer finished his first cycle of the new trial last Wednesday and will start again on another cycle on April 11th or 12th. He tolerated the Chemo very well other than a couple of minor things. His hair came in enough for us to have a family portrait done this week before it starts to fall out again from this new treatment. Overall he is feeling very well and getting more excited every day about the trip to Italy. We have Relay for Life coming up on April the 27th. Unfortunately Spencer will be leaving that day for his band trip to San Antonio so he is just fundraising but will not be participating in the walk. This has become a very special event for him so he is disappointed he won’t be able to participate but didn’t want to miss out on the opportunity to go on his first band trip. At the top of his home page here, you will find a link to his Relay for Life web page for this year or you can click here to get to it. We will try to do better about posting more often, but it is kind of nice when things are normal enough that there is not much to report. Normal seems to be a rare commodity in our home these days. April 16, 2007 Just wanted to let everyone know that Spencer started his 2nd cycle of the clinical trial we are on with the Topotecan and Cyclophosphamide. His blood counts are a little low but not below the 700 threshold at this point. He had a little bout with nausea this morning on the way to the hospital for the blood tests, but it passed quickly and he finished the day at school and felt fine when he got home. We met with our builder last week with the parade of homes in Denton, TX. Each builder in the parade will have a room in there house that will be designed around a Make A Wish Kids wish. Spencer's builder will be designing one of the bedrooms around his Mediterranean cruise. We will meet with them again some time after we get back to discuss the trip and show them some pictures and then I believe the unveiling will be on Sept 9th. The builder that he will be working with is Derecor Homes. April 18, 2007 On April 27, my family and I have a chance to change my son’s life, and therefore, many lives. How? My son’s life is tangled with so many other lives, all sealed with the same horrid knot. Cancer. Spencer, my son, became a part of this diverse community in March of 2004. Cancer has no prejudices. People of all ages, all classes, all races, all genders can become a victim. Together, these victims and their families are one. We are bonded by one thing. Hope. The first year after Spencer’s diagnosis, the story is no different than other extraordinary cancer survivors. Spencer beat the odds. But, in March 2006, the cancer was back. New obstacles were presented. Amputation? Experimental drugs? Spencer has Synovial Sarcoma, a very rare soft tissue sarcoma. The past years, we’ve asked so many questions only to realize that sometimes there are no answers. Left with only hope, cancer research took on a life or death importance. The American Cancer Society is giving us a day to articulate this hope. April 27. Relay for Life. At events in 4,800 communities nationwide, teams of families, friends and coworkers come together. How does this affect you? Cancer knows no boundaries. There are so many people whose lives have had some contact with cancer. Whether it is personal, a family member, or a friend, most of us know someone who is living with cancer, or someone who has survived cancer. Relay for Life is a way for you to hope with us for relief. For a cure. How? You can join a Relay event in your own community, you can support a team member participating in a Relay event, you can purchase a luminary in honor or memory of a friend or loved one, you can donate your time, or you can help raise awareness for this event. Although Spencer won’t be walking in Relay for Life this year, he has pledged to raise $1000. If you would like to help meet or exceed this goal, you can. Go to Spencer Taylor Relay for Life donation page where you have the option of donating on-line or printing off a donation form to mail in. Any donation is greatly appreciated. If you are interested in learning more about the McKinney Relay for Life, go to http://www.mckinneyrfl.com/ or to find a Relay close to you, go to http://relayforlife.org/ Our first year, we walked because Spencer had fought so hard to learn to walk again. The second year, we walked because he was back on crutches and unable to walk. This year, Spencer will miss Relay for Life. He has been blessed with the opportunity to experience his first band trip, but we will walk in his place. This year, we will walk for hope. Spencer is currently on his second “research” drug. The tumors in his lungs are inoperable, and as of now all we have is a list of drugs to try. Still, we all have to hope. We no longer have just a glimpse of how important cancer research is…Spencer’s life is depending on it. We need your help. We need your hope. Rhonda Taylor April 27, 2007 Spencer left on his first band trip this morning! Going to big San Antonio!! It’s a short trip, only for the weekend, but being among friends, I’m sure he’ll have a blast! He finished the second cycle of the Topotecan and Cyclophosphamide on Wednesday. Only had a couple of times he got sick from it and we still see no signs of his hair falling out, so…we don’t know! He’ll go in on Monday, April 30th for his scans. They are only monitoring the lungs at this point, so we should have some information on Monday evening on whether or not these two drugs have done anything positive. On Monday we had the chance to stop by physical therapy and say hi to Mark and everyone. Spencer was so-o-o happy to see everyone. He’s probably going into withdrawals from not seeing them! It was so good to see everyone, we are blessed to know them and have them in our lives! Truly, they are all an extended part of our family. We did miss seeing Lesley! Congratulations Lesley…enjoy those new babies!! Tonight, Gary, Zachary and I will participate in Relay for Life. It will be strange with Spencer not being there, but knowing that he is enjoying himself will make it better. I know it’s going to be an emotional night. It always is, but this year is a little different. Not only will we be walking in honor of Spencer, but I’ll be walking in memory of my dad. I do miss him. He was truly a unique man that taught me so much about life. For those of you that know me, this is more than likely where I inherited my stubbornness! Sometimes, it has served me well, other times…well…just ask Gary and my family!! Shelby Gifford, you are missed by many, as a father, as a “Popeye”, as a husband, a brother and I’m sure by the many people who had a connection to you. We miss you, but we’re doing okay (for the most part)-you’re close to us always. We love you. April 30, 2007 We went to get scans today and to see Dr. Leavey to get the results. It appears that the tumors have progressed, so the trial we were on was not effective. There are many more tumors now than there were before. Two of the larger ones that we looked at which weren’t there in February were around 7mm and the other just over 10mm. The CT hadn’t been studied by a radiologist yet, but the new tumors were clearly there and Dr. Leavey got quick measurements directly off the screen. We still have a few options left though. One of course is to continue with experimental drugs or do some combination of high dose chemo, but Dr. Leavey has moved the option of discontinuing treatment higher up the list. Dr. Leavey will be in touch with other sarcoma docs around the country today and tomorrow and will present us with what he thinks are our best options either tomorrow or Wednesday. At that point we will be able to have a good idea of what side effects Spencer will be dealing with and he can decide if he wants to continue treatment. Rhonda and I sat down with Spencer and Zachary after we got home to make sure that they knew exactly what we are dealing with before Spencer makes his decision on what to do next. He is fully aware of what he is up against and is now aware of his timeline based on the information we have as of now. That was a conversation no one should have to ever have with their children. He seems to be leaning towards continuing treatment at this point, but will wait to decide until we know what we will be dealing with from the effects of the chemo options we will have. Spencer dealt with the conversation much like he does everything else, very matter of fact and direct, and told us he was not afraid of dying, but it certainly doesn’t seem as if he is ready to give in to this horrible disease yet. Rhonda and I have told Spencer we will support his decision, whatever it may be. After we speak with Dr. Leavey and Spencer has made his decision, we will post here to let everyone know. If we don’t answer the phones for a couple of days, don’t be alarmed, it was extremely difficult to write this, but even more difficult to say the words out loud. We should be back in a more normal frame of mind once we have made a decision, so don’t be afraid to call. We are sorry that we don’t have a recap of Relay for Life posted. This weekend since the Relay has been filled with sleeping, recovering, and worry about the scans we were having today. We will get it written as soon as we can and get it posted here. We do have the pics we took of the event posted, if you haven’t seen them yet you can click here to see them. We will also have Spencer do a recap of his trip to San Antonio soon as well. May 3, 2007 Just wanted to let everyone know where we stand at this point. Spencer has decided that if he makes the decision to continue treatment, he won't start any treatment until after the trip. He wants to make sure that there will be little chance that he will be sick or feeling bad during the cruise. We notified Dr. Leavey so that he could take more time discussing potential options with other sarcoma docs around the country. He should be in contact with us sometime next week with some ideas, and then we can discuss them with Spencer so he can make a decision. We will let yall know as soon as we know more. May 11, 2007 All of us had a very special day yesterday. Our wish grantor, Michael, knew that we were uncomfortable about some of the dinner dress requirements on the ship. We are supposed to have 2 evenings where the dining room requires formal attire. Either tux or nice suit and tie. We are just not a family that wears or has formal attire and weren’t sure how we were going to get around this one. Michael and Make A Wish got in touch with Brooks Brothers, a nearly 190 year old clothing store chain with a store here in the Dallas Galleria. Last week we got an email asking us to be at the store yesterday afternoon. We got there and Alan and George said they had a list of items to provide us with for our trip. By the time we were done, Spencer, Zachary, and I had been fitted for a suit, two ties and shirts, a polo shirt, and swim wear. It was an amazing evening, we had never been to a nice clothing store like this and they made us feel very welcome. They were incredibly nice and were more generous than we could have ever imagined. More than anything, this event relieved a lot of stress Rhonda and I were feeling about being on our first cruise and being uncomfortable or feeling like we didn’t fit in. The generosity folks have shown towards our family makes us feel truly blessed. I have posted a new album on the photo page of our evening with the great folks at Brooks Brothers. May 19, 2007 We had Spencer's Bon Voyage party at Brooklyn's Pizza on Wednesday night. Make A Wish set it up and the great folks at Brooklyns provided the place and the pizza for Spencers Friends. Everyone had a great time and ate way too much. I have posted an album over on the photo page of the evening or you can click here to go directly to it. I think now Spencer is officially ready for the trip. It was great to see everyone and have everyone together one last time before we leave. We will have an appointment with Dr. Leavey on June 4th after we get back to discuss what treatment options he has for us. We should have a decision shortly after that on the direction Spencer will be heading with his possible treatment and I will get the information posted here sometime that week. Don't know if I will be able to do another update before we leave, if not, we will see yall when we get back. Thanks for the continued prayers. May 21, 2007 Just got back from Brooks Brothers a little bit ago from our final fitting. Took a few pictures with the three of us in our new suits. They are in the Brooks Brothers album on the main photo page. As you scroll through the album, they are at the very end. Remember that once you click on the link to the album from the main photo page, after you click on the pic folder in the center, the thumbnails will come up, then just click on the first picture and you will see it enlarged. Then just click anywhere on the right half of the picture and it will take you to the next one. The folks at Brooks Brothers are absolutely amazing. We are still in awe of what they did for us that we never could have done without their help. Well we leave in just over 2 days. Probably the last post till we get back. We are looking forward to a great trip. Keep an eye on things while we are gone and we will talk to yall when we get back. June 3, 2007 We got back from our trip last night late, although without most of our luggage which we hope to have by tomorrow. I have the pictures already loaded on the website photo page, but they are just in the beginning stages. There are over 1000 pictures so it will take some time to get all the descriptions on them, I will be working on this over the next several days. If you look at them prior to me getting the captions on them, please come back and see them when they are finished so they will all make sense. A brief tutorial on the album as it is divided by day. When you click on the link from the photo page you will see all the daily folders. Click on the first folder and it will bring up the page of thumbnails. Click on the first thumbnail and it will bring up a larger image and you can scroll through them by clicking anywhere on the right half of the enlarged image. When you reach the end of that days pics, look at the top of the page and you will see a yellow bar that says, Images >> Day1_Barcelona (or day2_Boarding etc...). To the left of that bar you will see a circle with little boxes in it, click on that circle and it will take you back to the thumbnail page. Then in the circle you will see an up arrow, click on that and it will take you to the main folder page to click on the next days folder to look at the next days pictures. Here is Spencer's recap of the trip that he was up at 7am this morning typing to email to all of his buddies. In typical Spencer fashion, it is "just the facts maam". Short and to the point. We will all post our own recap of the trip in the near future, but it will take a few days and we will have them posted as soon as we can. Rhonda's and mine will take a little longer to write as it will likely be a little more descriptive of everything we experienced in this trip of a lifetime. Here is Spencer's recap. First of all, the 12 hour plane ride was not fun. And that's all I have to say about that. We arrived at the Barcelona Airport at 8:00 in the morning, which would be 1:00 am back in Mckinney. I was pretty tired. A cab took us to out hotel. The hotel, like everything else in Barcelona, looked awesome. Tiny sculptures on every wall, and plants everywhere. If it weren't for the plants, it would be almost exactly like NYC. Bad smells every once in a while, good food everywhere, and a lot of cars. There were a lot of bikes and scooters though. We looked around for a bite to eat, and we found one by La Sagrada Familia, the giant cathedral designed by Antoni Gaudi. They started building it sometime in the 1880's, and it is supposed to be finished in 2025. It was very impressive. There were 8 huge spires towering above the town. Only thing about Barcelona that I didn't like, was the fact that the food didn't impress me. It was just okay. That was a let down for me, but maybe we just ate at the wrong places. We went back to the hotel, went on the roof and looked around. It was a great city. We left and went down a huge street. There were many entertainers on the street pretending to look like statues. I think most people walking on this street were tourists. We found a restaurant, with more decent food. It was still just decent. After that, we explored the scenery of the town, walking down small alleyways and next to churches. Then we went to the hotel and finally got some sleep. The next morning, we went to go find a place to get breakfast. There was a small cafe/bar that had some, so we got breakfast there. I had donuts, but I also tried one of their sandwiches. It was a long sandwich with cured Italian style ham, and a little brie cheese. I liked it a lot, and I couldn't really taste the cheese, which was good. Then we got back to the hotel where a bus was waiting to take us to the Voyager of the Seas. When we got to the ship, it was huge. I'd say it's about 3-5 football fields long, and it was about 15 stories high.We weren't allowed in our rooms yet, so we went to the lunch buffet. It was delicious, and free. This was going to be a great trip. We went to the rooms, and we were given arcade cards and other free tickets that were provided by the captain and an Adventure Ocean manager. We were considered VIP guests. We went to the arcade and played a lot of games, especially Mario Kart haha. We looked around at the 5 pools and 4 hot tubs. There was an ice-skating rink, a few theaters, a sports court, and countless restaurants. I also went to a teen club they had on the boat, and there were about 3 or 4 other people there, which was crappy. But I kept showing up throughout the cruise, and more and more people wandered down there. Once someone went to it, they kept going to it. In the end there were about 15-20 people that all ended up being good friends. Oh, and dinner was good too. The next day, we docked at Villefrance, and took a bus to Nice, France. It was a cool place, with good food. We went to the beach, which had a lot of rocks instead of sand. It was still cool, and there were many people there.That was the highlight of Nice. Then we went back to the boat before it left. It started getting windy and the boat started rocking. People talk about the fact that you can't feel a ship of that size rock back and forth, but I felt it. It was very windy, and the waves pushed us a lot. For most people it was hard to walk, because they nearly fell all the time. I guess the crutches helped me a bit, as well as just having good balance. The next day we were supposed to dock in Pisa Italy, but it was so windy that they wouldn't let us. We had to pass it and go straight to Rome. That also meant we had a full day at sea. I ate at this 50's style diner, and just got a chicken sandwich, and it was delicious. Most of the day I simply stayed with the other teenagers. When we got to Rome, it was still windy and raining. One old lady had gotten of the boat and fell on the ground and couldn't get up. I think she was injured and that day was ruined for her. I did fine though. We found our two guides, and started our 1 hour drive to Rome (Rome was actually far from where we docked.) We first saw the Circus Maximus, the track where public races were held for the emperor. We then went to the colliseum, which was what I expected to be honest. You could tell where parts of the building were replaced by more modern engineering. Parts of it were even made of bricks. It was still cool. We went to a restaurant, and had some delicious pizza. Then we went to the Vatican museum, and the St. Peter's Basilica. They were very impressive. After that, we were forced to leave, because the boat would leave pretty soon. Naples was just as great, but extremely crowded. Cars were everywhere, and they were fast. Crossing the street was not easy. Many cars and scooters were literally inches from hitting us. We had some of the greatest pizza there. We also went to Pompeii, which was cool. It was more that I expected. I thought it would be more like a big pile of rocks, but it was more preserved than I thought. We stopped by a historic castle, and then we went back to the boat. The next day, we went to Palermo, Sicily and looked around there. It was a huge guided tour on bus. Every once in a while we would get off the bus and go inside a church. I honestly didn't like it. It would have been better to just walk around and find everything on our own. After that short tour, we went back to the boat. The next day was a full day at sea. I went to an ice show, and the performers put me on a throne on top of the ice and threw me around. It was a lot of fun. Then I also got a tour of the bridge. It was kind of cool. The next day, we flew back home. June 4, 2007 Well, this is turning into quite a project, but have got the captions done through Rome. Still have Naples, Sicily, and the last few small folders to go. Have to go back to work tomorrow, so it could take a few days to get finished. I promise I will have it done as soon as I can but might take a few days. June 9, 2007 Okay, I finally have all of the descriptions on the pictures. For those of you who had waited, they are now ready for viewing, if you have already looked at them, if you want to go back through you can now see the description of what everything was. Thanks for being patient with this, it took a lot longer than I thought it would. Also wanted to let you know about Spencer's night Thursday. Spencer's Physical Therapy Team, Mark, Rachel, Lesley, Sheryl, and the rest of the crew set up for the Texas Rangers to invite him to throw out the first pitch at the Rangers game on Thursday night. We arrived about 4:45 and Rose with the Rangers escorted us down to the field. We stayed on the field for about an hour and watched batting practice close up. While they were going through their rounds, several of the Rangers came over to talk to Spencer, Zachary, & Justin, sign Spencer's baseball, and have their picture taken with him. Then Rose took us up to the Casey Stengel Suite and we relaxed for a while until they took Spencer, Mark, and I down to the field so Spencer could throw out the first pitch. The mascot, Captain, was the catcher for the pitch, and seeing Spencer on crutches, he moved up to the grass in front of home plate so he wouldn't have to throw so far, and then Spencer threw it over his head. Then as we walked back down the tunnel to get to the elevator to go to the suite, Sammy Sosa came walking out of the tunnel from his dugout and walked through about 15 of the other dignitaries who were with us and shook Spencer's hand and told him "nice first pitch" before heading back. Unfortunately I was unable to get a picture of this as I turned off the camera as we entered the tunnel thinking the festivities were over. When we got back up to the suite the brought pizza for all of us and we enjoyed the rest of the game. It was a great night for Spencer and the rest of us. I should have those pictures posted either tonight (Saturday) or tomorrow. Would do it right now, but I need a little break from pictures for a little while. June 10, 2007 The Texas Rangers game photos are now posted on the photo page. Also wanted to let everyone know that Spencer's page now has a new web address; it is www.spencerswebpage.com. It is the same page with the same info, just moved so it will have an easier address to remember. The other page will still work for a little while, and then I will set it up to just have a link to the new address. For those of you who have his page saved in your favorites, be sure and update that bookmark to the new address. I spent most of the day today working out all the bugs at the new address, if you find anything that doesn't work; pictures that don't show up, links that don't work, etc. please email us or leave a message in the new guest book. Thanks to everyone for continuing to check on Spencer's progress and for sending all the prayers our way. We go back to the doc tomorrow, hopefully will have a decision made and some new info by the middle of the week. June 14, 2007 We went to see Dr. Leavey on Monday and he talked to us about our options. He had been at an oncologist conference the past week and talked to many docs about what Spencer’s options might be. The options we have now are pretty limited, some by the toxicity of the drug and some by the willingness of our insurance to cover it. He presented us with 5 potential options but said that none of these options would cure Spencer, the best we could hope for would be to give him a few additional months. Spencer told him he wasn’t interested in trying a new drug just to get a few extra months, but wanted to go for the most novel approach he could that might prove to be the miracle drug for him. What Dr. Leavey seems to want most is for Spencer to stop treatment while he still feels good, and many of the treatment options we have now could cause some pretty severe problems and would still not likely give us hope for a cure. I was discussing with him the balance between trying to pick a drug that might be effective with the potential damage that drug could do to Spencer’s body and said it was like we were playing the lottery looking for that one drug that might work, and deciding how big a risk we wanted to take with the toxicity of those drugs. He replied that it wasn’t like the lottery in that with playing the lottery we had a chance and with this, under these circumstances there is not a chance. That was very difficult to hear, but we have always asked Dr. Leavey to be very honest and up front with us about everything as we have been with Spencer throughout this process. We just believe we have a better chance of making a good decision by having ALL the information laid out in front of us rather than just part of it. Spencer is still wanting to try some new treatments and has narrowed it down to three choices. A combination of Vinblastine and Cyclophosphomide, or a Phase I clinical trial of Dasatinib, or a Phase I clinical trial of Ispinesib. He is doing some research on these and should have a decision made by the end of the week. He is still considering the option of stopping treatment, but it doesn’t seem to be the way he is leaning at this time. This is definitely not the news we wanted to hear, but Dr. Leavey’s statement about the lottery having better odds than Spencer has made the reality of this situation really set in. Don’t take that to mean Spencer or the rest of us have given up. Dr. Leavey didn’t rule out a miracle and that is what we are now hoping for. June 15, 2007 I have finally got my recap of the trip done. It is very long so I saved it as a PDF. You can click here to open it up to read it. It is several pages long so make sure you have a little time. You will need Adobe Acrobat Reader to open it, if you don't have it you can click here to get to the page to download it. June 17, 2007 I have posted a few more random pics of the trip, it is under the same Italy link on the photo page, but when you click on the link, you will see a new folder added that is titled random pics. June 20, 2007 Spencer is starting his new treatment today. He has decided on a combination of Vinorelbine and cyclophosphomide. He will take the Vinorelbine in the clinic through his port after a 30 minute infusion of Zofran to help battle the nausea. He will have one treatment per week for 3 weeks, then one week off. The cyclophosphomide will be oral and he will take it one per day (alternating 50mg and 75mg every other day) for four weeks. We don't know yet if we will scan again after one or two of these month long cycles. Hopefully we will have better results with this new treatment. Also, I (Gary) had 4 wisdom teeth removed yesterday due to absess. All went well and not much pain so far. We are all about tired of seeing doctors at this point. June 29, 2007 Spencer has now had 2 treatments of the Vinorelbine. So far it hasn't been too bad. No nausea yet. He has experienced some unusual pains. He has had some pain in his jaw along with a sore throat which the doctors said was likely related to the chemo. He has also had some pain in his shoulder. The don't know if this is due to the chemo, but could be. It had started to get better as he reached the end of his first week of treatment, but has gotten worse since he had his second treatment, we will wait to see if it follows the same pattern moving into the next treatment. He will have one more treatment on Monday of next week, then a week off before he starts the next cycle, but will continue with the cyclophosphomide for the remainder of the 28 days. Other than that things are moving along rather normally. The original tumor behind his knee has also grown now to the point that the doctor can now feel it under the skin. Not much else to report, just wanted to let you all know what has been happening the last few weeks. July 16, 2007 Spencer went in for scans today. Unfortunately the results were the same as in the past. The tumors in the lungs continue to grow and multiply so the previous treatment was ineffective. He presented us with 3 new options this time. The first is a Phase I trial of Linalidomide . The second is a Phase I trial of a combination of Temozolamide , Irinotecan, and Vincristine, and the third option is Ispinesib. Although Spencer hasn’t made a final decision yet, he is leaning towards the trial of Linalidomide. He has to wait three weeks before he will be far enough past the previous drug to be considered and there is a chance the trial will be full by then, so he would take a sister drug to the Linalidomide, which I believe is Thalidomide, for the next three weeks and then see if he is eligible for the trial. Other than that, things are moving along as normal as can be expected. He is still having a little pain in his shoulder and ankle, but nothing that keeps him from being able to anything he wants to. We will post again when the decision is made about which new treatment he will be taking. On a happier note, Spencer and Zachary got to ride in a helicopter last week. Spencer’s Physical therapist knows a doctor that has a 4 seat helicopter and he offered to take the boys up in it. The boys had a great time and the pics are posted on his photo page here. July 20, 2007 Spencer has decided to apply for entrance into the Phase I trial of the lenalidomide. He must be off of his previous chemo for 4 weeks before he can be elgible for the trial, so in the meantime he has been prescribed Thalidomide, which is a sister drug to the lenalidomide. Because of some of the side effects of the drug, the pharmacy that dispenses it must have a special registration, and we just found out ours doesn't. We are trying to get that worked through, so we should have an idea of where we are at as far as treatment by Monday. July 26, 2007 Finally received word today that our insurance company has approved the Thalidomide. The pharmacy has ordered the drug and should have our prescription by Friday, So, he should be beginning this new treatment by the weekend and then will apply for the Phase I of the Lenalidomide within a couple of weeks in hopes that the trial will still be open. Will try to get an update posted within the next week to let everyone know how he is reacting to the new medication. July 27, 2007 Mark called today and told us that he was going to come by the house to “take Spencer driving!” I guess he figured out that we were a little leery about letting Spencer drive his Prowler and were never going to call him to set it up! When he turned the corner, oh my gosh, it is beautiful! Mark said everyone at PT kept asking him what they were going to do if he got a ticket, Mark said, “we’ll pay it like we do everything else!” I asked what he was going to do if Spencer had a wreck and he said, “oh that’s what insurance is for!” Mark, you have a lot of faith in Spencer!! Anyway, Spencer was beaming! Here is his recount of the day! (Spencer style!!) “The Prowler was awesome! First, just looking at it would have made my day. First we drove to Shogun, my favorite restaurant in town. After filling myself up, we drove to the Mckinney North parking lot and I got to drive around for a while. I got to max out the gas a few times. I think I did pretty good. Then he got back in the driver’s seat and we went to Lesley’s house. I got to talk with her and she gave me the DVD of the Rangers game I went to. After that, we drove back into Mckinney and I got behind the wheel near our house. I parked in front of the house, where Mom and Dad were waiting outside. Then I floored it in front of them. I don’t think they cared that much, because they are so understanding. I got a sunburn from sitting in a convertible for a day, but it was worth it. Oh, and the speedometer goes up to 150 mph, in case anyone wanted to know. It was one of the greatest days I’ve ever had. Eat good food, go really fast, what more could I ask for? Thanks Mark for letting me do this. I hope we can do it again sometime.” Just to clarify…we did about die when Spencer “floored it” on our street! He actually did look quite comfortable behind the wheel! We were talking about him driving it and he made the comment, “Dad, I do think I like it better than your car” Go figure!!!!! Anyway, hope you enjoy the pictures, it was a great day for him! Zachary has decided on the kind of car he wants now! Dream big Zachary (and get a job!) Pictures of him driving the Prowler are on the photo page. We’ve also loaded the video of the baseball game. We think it’s amazing! Lesley’s husband, Brandon made it from the video that Rachel and her husband took at the game that night. Lesley wanted Spencer to send him some of his favorite music and this is what Brandon put together. Again, truly amazing! Spencer (and the whole family) have made some truly incredibly giving friends. Thank you all for being in our lives! The Rangers Video should open in either WinDVD or Windows Media Player. I am having trouble getting the video to work, hopefully will get it fixed tomorrow. July 28, 2007 Hey folks, I apologize for it being so difficult to see the Rangers video, but here is the best solution I have so far. When you get to the photo page, right click on the photo that says "Video of Spencer at Ranger game" and then select either save target as, or save link as, and then save the file to your desktop. It is a giant file and will take some time to download, but as it features our boys, we think it is worth it. After it finishes downloading, open up the file (it will be labeled VTS_01_1.VOB) and it should begin to play in your windows media player. It does have sound, so make sure your speakers are on. I will continue to do some research over the next few days and hopefully will find a better way to view the video from the web page. Thank you for your patience and all suggestions are welcomed. July 28, 2007 I now have a smaller, lower quality video of Spencer's first pitch at the Rangers game loaded on the photo page. It also has a watermark across the middle of it, but should load much quicker than the other one. If you want to see the higher quality video, please follow the instructions in the update below, it is the one on the left on the photo page. The quicker download is the one on the right on the photo page. Aug 3, 2007 Spencer started his new treatment (Thalidomide) on Sunday. He has only had one bad day so far, woke up very dizzy and nauseas Tuesday morning and had to miss his first day of Summer Band practice, but seems to have been fine since. We will see how it goes and will have our next appointment on the 13th. Aug 10, 2007 Wanted to get everyone up to speed on some recent developments. Spencer started having a great deal more pain and the medication was unable to completely take care of it. He went to the hospital yesterday and they discovered fluid on the lungs. He is having the fluid drained today to see if that will ease the breathing difficulty and some of the pain. They did scans also yesterday and the tumors have progressed "significantly" (as Dr. Leavey put it). We go back to the doctor on Monday. We will try to get a more detailed update posted this evening after visiting with Dr. Leavey after the draining today, and then will post on Monday after visiting with the Doctors with more updated information. Aug 11, 2007 There's been a lot that has happened the last couple of days, please bear with me if I repeat some of what has already been posted. Wednesday night Spencer's pain became much worse. He had been having some pain in his ankle and the back of his shoulder, but the shoulder became much worse on Wednesday night. He had a hard time sleeping and the next morning he was not only having the pain in his shoulder, it had also moved to his ribcage and his chest started hurting when he would take quick or deep breaths. I called Children's and they said to bring him in. Dr. Leavey did a physical on him and thought that there was a possibility of some fluid in the lungs, so he sent Spencer down for a chest CT. He also told me to increase the amount of the pain medication. As we were leaving the hospital, he was having a difficult time walking because of pain and shortness of breath, so I gave him the extra dose of medication and had him sit down to catch his breath for a bit. As we were driving home, he told me that the medicine had worked although he didn't think he would be able to go to school taking that much medication. When we arrived home, his breathing and pain in his chest became markedly worse. After I was able to give him more medicine, he was able to get in a position to sleep through the night. The next morning, both of his shoulders were hurting, his right ribs were hurting, and his chest was hurting and he was having a hard time breathing. I called Ms. Pat and Dr. Leavey again. Dr. Leavey had had a chance to look over the scans and there was a significant change in the tumors. They are much larger. He said he believes "this is it". I asked if this was the time we start talking about Hospice. He asked if we had talked about Hospice yet and I told him no, but I knew about it from my grandmother and my dad. He said he would set up a meeting with the Hospice nurse for us on Monday. He said that there is some fluid on the lungs, I asked if there was a lot and he said it was hard to distinguish between the tumors and the fluid, but he would talk to the doctor that would be doing the procedure and try to get us in on Monday morning. He called back a little later and said that they could do the procedure this afternoon, I told him we would be there. I talked with Spencer and told him everything that Dr. Leavey had said. I explained to him about the tumors, about stopping the thalidomide, about Hospice. I explained to him Hospice's role. Spencer told me that he doesn't think he is ready stop treatments, and I told him that I didn't think we had any more options. He said that maybe we could try some of the riskier options and when I asked what he meant by this he said maybe the radiation or surgery. I told him that at this point I thought both of those options were off the board. I asked him if he understood that there is no cure for this, and he said "yes" and so I asked what his reasoning would be for more treatment, to which he replied, "to live longer". I told Spencer that I didn't know of any treatments, but he and Dr. Leavey could talk about it on Monday. When we went in to have to procedure for the fluid on the lungs, the Dr. came out and talked with me. She told me that she had looked at the CT scan and typically she would not do this procedure because Spencer has such a "heavy burden of tumors", but she asked herself what she would do if this were her family member. She told me that she knew that if this were her family member, she would want to procedure done to help keep the person as comfortable as possible. I can't remember the amount of fluid she removed, I believe it was around a pint, but she said that there were more pockets of fluid and she told Spencer and told him she could keep going if he wanted, but he told her, "I think I'm finished", so she stopped. She told me that she doesn't believe he will get a lot of relief from the removal, but he might get a little when he is lying down. I went up to get a new prescription for pain medication from Ms. Pat when we were finished and she gave me a hug, said she was sorry, and then said, "Rhonda, did it just come on?" I told her that Spencer was doing great on Monday and Tuesday, he had gone to band, he didn't have any trouble playing his trombone, other than a little pain in his shoulder, he seemed fine. She told me that Dr. Leavey had called her and said, 'Pat, you should see his scans, the tumors are on a roll, they are growing fast'. Pat told me, "Rhonda, this just doesn't happen, they don't take off like this and grow this fast. It just doesn't happen." Spencer's breathing seemed a bit better today. He's having a problem with hiccups, which hurt. His pain level seems to have dropped a bit, although he is on continuous pain medication at this point. This is all a very sudden change, lots of them. We are asking for your thoughts and prayers for Spencer's comfort. One thing we don't want to see is him suffering. We are also praying for strength and peace. We will keep you posted on how things are going. Please keep all of us in your thoughts and prayers. Aug 13, 2007 Here is the latest update on Spencer. He had a really good weekend with his grandma and grandpa, and 2 of his uncles on Saturday, and got to play some poker. Another Aunt and Uncle came Sunday, Rhonda's sister Val, and brother-in-law Ken. Ken layed hands on Spencer Sunday and we all prayed over him and Spencer was doing well til about 6pm. He began to feel very nauseas and said that was making it difficult to breath. Rhonda took him to Childrens to see if they could make him more comfortable and the ER checked him out and said we could either put him in ICU or a regular room. We chose the regular room and they got to the room about 1 AM. The nausea kept him up all night, and he was still up and not feeling well around 9 when Dr. Leavey came in. He spoke with Dr. Leavey briefly, but not very clearly, and then Dr. Leavey asked him to lay his head down so he could examine him. When Spencer layed his head back and closed his eyes his breathing became very labored and Dr. Leavey asked Rhonda to call and find out how close I was to the hospital. When she called I told her I was just parking and she said Dr. Leavey said Zachary and I needed to get up to the room immediately. We got up there and all said our goodbyes, his best friend Justin, got there with his family around noon, and Spencer's grandparents and Uncles got there about 1PM. Shortly after his uncles got there, Spencer bolted upright and started scratching, because of the itching the painkillers cause him. He wasn't very coherent, and we were barely able to speak to him, but he was awake. He was like that for a little over a half hour and then went back to sleep for about 20 minutes, and then he woke up again and this time was wide awake. He was as coherent as he was the previous 2 days. The nurse came in and checked his oxygen and it was at 100, having been at 54 when they disconnected him from the monitor. Whatever happened, us and many of Spencers friends and family had an incredible afternoon with him. Dr. Leavey and the nurses were surprised that he had woken up and rescheduled the hospice nurse to come talk to us after canceling the appt earlier in the day. If Spencer is in good enough shape in the morning, hospice will bring him to the house and they will manage his care from here. Spencer wants out of the hospital real bad. Will do our best as things progress to keep updated. Aug 14, 2007 Spencer Wayne Taylor passed over at 10 PM August 13th, 2007. Aug 14, 2007 Thank you all for all the prayers and support for our family during this time. There have been so many people who have kept up with Spencer through this site. We felt it would be appropriate to post all the information about services to honor him also. Spencer has brought so many people together, taught us so much, and will continue to do so. Funeral services will be held on Friday, August 17, 2007 at 2:00 PM at High Pointe Church of Christ in McKinney with Pastor Charlie Tuttle officiating. Interment will follow at Ridgeview Memorial Park. The family will receive friends during a visitation at Turrentine-Jackson-Morrow Funeral Home on Thursday evening from 6:00 to 9:00 PM. Click here to get to Spencer's obituary at the funeral home, or go to www.tjmfuneral.com and click on sign and view registry book, and then search for Taylor and select Spencer. Aug 15, 2007 Spencer's band at McKinney North has arranged a Candlelight Memorial for Thursday night, August 16th, from 9PM to 10:30PM. Click here to see a PDF of the invite to the memorial. The memorial will be on the steps of the McKinney North High School auditorium, everyone is welcome. You will need Adobe Acrobat Reader to open the invite, if you don't have Adobe you can click here to get to the page to download it. Aug 16, 2007 Spencer's uncle and my brother Alex gave us a letter today about his memories of Spencer and at the bottom it had a poem, it touched us so much we wanted to put it here, so here it is, from Alex (Uncle Nancy) Gilmore. A Poem for Spencer God looked down on your body, So tired from hanging on, From a life that was overwhelming you, And wanted back his son, So he asked you for your last breath, And gave you what was best, A place to be at peace, A final place for your head to rest. I should now at least tell you the story about how he got the name "Uncle Nancy". Alex made the boys quilts, one Dallas Cowboys Quilt, and one Oklahoma State Quilt, and the boys decided that because he made quilts he would now be called Uncle Nancy instead of Uncle Alex. Aug 17, 2007 Beatte, one of Spencer's wish grantors sent us this poem yesterday and it gave us a great deal of comfort, and we had to share it with everyone. A Letter From Heaven Mommy, Daddy, & Zachary, I dreamed you a letter This comes from Heaven above Even though I'm up here I can still feel your love In Heaven there is no sorrow There's never any pain or fear And would you believe I've not been sick One time since I've been here? You'd be so proud of me, I can do so many things and everyone says I look real cute In my halo and my wings Every year at Christmas We have a great big tree up here And guess who gets to be the Angel On top of the tree this year I dreamed you this letter That I'm sending you tonight To tell you not to worry And let you know that I'm all right Sometimes I hear you crying And I wish you weren't so sad Cause I think you're the best family Any Angel ever had So please don't feel bad for me I'm in God's tender care And he wanted me to tell you That he hears your every prayer I know you miss me, You know I miss you, too but remember, me and God Are always watching over you We want you to have a good life Full of happiness and joy I'll see you in your dreams, Love, Your Little Boy Thank you everyone for the continued prayers and please pray for strength for us today. Aug 18, 2007 Well, this could be the last entry for a little while, but after thinking about it for a long time we believe we are going to keep Spencer's website going for a while. It became my therapy after the diagnosis some three and a half years ago and may continue to be my therapy in the days ahead. Hopefully it will be one of the things to help to keep his memory alive and we hope it will allow Spencer to continue to impact more lives in addition to the ones we have discovered over the last several days that he had impacted while he was here. We probably won't update more than once a week, but will try to post a memory, or letter we have received from someone who knew Spencer, or just to talk about how much we miss him. Today I am posting a link to the article that was in the McKinney paper yesterday about the Candlelight memorial. We didn't know about the article until yesterday, and we haven't posted about the memorial yet, but the article will give you just a brief look at what a great tribute it was and just a few of the stories that many of his friends and teachers told about him at the memorial. You can click here to get to the article online, it was on the front page of yesterday's paper along with a picture of Spencer as well. August 30, 2007 It has been quite some time since we have posted anything on the journal here. Seems like there was always some new doctor visit, treatment update, or new adventure that Spencer had been on that caused us to need to update this journal in the previous few years, but I just couldn't come up with anything to put in here the last couple of weeks. It has been an incredibly difficult few weeks as we have had to try to adjust to our life without Spencer. I wish I could say it was going well, but it is not, and I guess that is to be expected. Zachary started school this week and seems to be adjusting to high school well, and will march in his first half time show tomorrow night. As far as the future of this site we have decided to keep it up indefinately at this time, but with a few changes. I have reversed the order of the journal entries. All previous entries were posted at the top so the readers wouldn't have to scroll through everything to get to the bottom to see the new entry. Now it is in chronological order and will likely have no further updates and will serve simply as the story of Spencer's Journey. Hopefully the story can help someone who might be going through something similar to what we have gone through. We still haven't decided whether or not to post any new entries here or leave this page as it stands and post all new entries on a new "memories" page or something like that. We are also thinking about creating a Taylor family page with a link to get to Spencer's pages from the new home page. It just doesn't seem like we do enough stuff important enough to put on a web page. We do want to thank everyone who came to attend Spencer's viewing, candlelight memorial, and service. We also want to thank everyone for the support and help given to us the week of Spencers service, especially Stephanie and Monica, without whose help we probably couldn't have gotten through that week. I will continue to post any new updates here until we decide what shape the site will take as we move forward. Sept 1, 2007 Still not sure how we are going to set up the web page, so will keep posting updates here for the time being. We went to Zachary's first halftime performance last night. The band did real well for the first performance of the year. It was difficult going to the first game without Spencer, but Zachary did a real good job and made it through his first high school performance without any major mishaps. As they were introducing the band over the PA system at half time, they announced that the marching program this year would be in honor of Spencer and was titled Sacrifice and Ressurection. That surprised us but we were very touched. Pictures of the evening are posted over on the photo page, or you can click here to get directly to it. Sept 4, 2007 I have decided to post a link to some music files. All of these songs were from a playlist that Spencer had been putting together over the past couple of months before he passed away. To us they all seemed prophetic of the events to come. It was like Spencer had put this list together for us to hear after he was gone. Zachary took these songs from the list and set it up so it would be playing in the background in the chapel on the night of Spencer's viewing. I can't tell you how many times I have listened to this CD. It brings tears to my eyes everytime I hear it, but also seems to somehow bring some comfort. You can click here to get to the page that will play the music. Gary Sept 15, 2007 The homecoming game was last night. We beat Forney 14-2, it was a very tough game but a fun game to watch. It was our first home game so it was the first game to see our game program with the ad the band and football team put in there in memory of Spencer. You can click here to see the ad from the program. The band also played Ave Maria for the first time in the halftime show, this is the song they played at Spencer’s Service. It was a teary night but a good night none the less. All in all it was a very difficult week with everything surrounding homecoming and then the one month mark on Thursday, but we made it through and now are ready to tackle the next obstacle. We are finding our way through somehow, but we ask for your continued prayers. Sept 29, 2007 Yesterday was Spencer's birthday so, although it was a very difficult day for us, it was also a very good day in many ways. We had been looking for a way to thank the band for playing at Spencer's service and Spencer had also wanted to have a huge 16th birthday party. We decided in order to fulfill both of those things we would have a birthday party and feed the band pizza before the game last night. Usually the kids collect money on Wednesday and one of the parents goes and picks up all the food on Friday so they can eat right after school lets out. We brought in pizza from Brooklyns, Spencers favorite pizza, and fed the band for Spencers birthday. As they were finishing eating the band officers walked out of the band hall with a large wrapped gift. They said it was a gift for Spencer to be given to us. We unwrapped it to see that it was a framed band shirt that all the band members had signed with the name of the show that they have dedicated to Spencer. You can see a picture of it in the Colony photo album on the family photo page. We were not expecting this and were very touched. The band directors and kids have been incredibly gracious and helpful to us throughout this process.It was an incredible evening and I don't think we could have found a better way to celebrate Spencer's birthday short of having him here with us to celebrate it. This morning we went out to the Parade of homes. Every year the Dallas home builders hosts a parade of homes and the proceeds go to the Make a Wish foundation. Each of the builders also gets one wish child and designs a room in their house around that childs wish. Our builder was Derecor homes, and they designed a bedroom around Spencers trip to Italy. We arrived and had breakfast around 9:00 and were introduced to the other builders and wish families. Then we went over to see Spencer's room. The house was spectacular. As we walked through it we began to see things that we believe Spencer must have had a hand in. From all of the sunflowers to birds of Paradise, to the LG TV's hanging on all of the walls. LG was the sponsor of the first wish event Spencer attended where the boys met Tony Hawk, but they weren't a sponsor of this event, it was just a coincidence, or as the decorator put it, "a Godincidence". His room was absolutely amazing and brought back many memories of our trip. The builders and decorator did an amazing job of capturing Spencer's personality and spirit. You could tell that it wasn't just something they had to do, but something that they put a lot of love and thought into. The pictures of the Parade of homes is on the family photo page now, and we are heading to the Drum Line contest, will get those pictures posted as soon as possible. Sept 29, 2007 It has been a very busy and full weekend and quite a roller coaster, but we think most of the busy stuff is behind us and we are getting through it. After the parade of homes this morning, we spent the rest of the day at the Plano Drum Line competition. Zachary and the rest of the group performed very well and Jon, the drum line captain did a great job with his tenor solo. We dropped Zachary off at school about 11:30 this morning and we just got back around 10:30pm. After going non stop yesterday from 6am to midnight, then starting back up at 8 this morning for the Parade of Homes, he has had a very tiring weekend, but is at a party with the rest of the drum line right now so he is still going strong. I have posted some pictures and videos of the perfomances at the competition. The batteries ran out on the camera while shooting the video so I missed about a minute of the middle while I changed out the batteries. All of the videos are in the Drum Line Contest album on the Family Photo page. I also have not had time to tell you about something else that happened on Friday. You may have noticed that the guest book has received many new messages from folks that were referred by Kidd Kraddick. Well, what happened is, Kidd is the radio personality for the Kidd Kraddic in the morning show that is broadcast from here to several states. Several days ago on a whim, Rhonda sent Kidd an email about Spencer. When her and Spencer would go to the hospital in the mornings for all of his appointments they would listen to his show during what was usually a hour and a half drive, and she emailed Kidd that Spencer and her had thought that two of their comedy bits that they had done were the funniest they had ever heard and they had laughed all the way to the hospital and she asked if he could replay those on Spencer's birthday. Well, he read Rhonda's email and then talked about Spencer from some information he had gotten from the website here and then he replayed the two comedy bits. I have asked them if they could provide us with a tape recording of that segment of the show as Rhonda didn't really expect them to do it and I was at work so neither of us heard all of it nor did we record it. After Kidd gave out Spencer's web page address, several people went to the site and now Spencer has new signings from Alabama to Oregon. If they provide us with a tape and will allow it I will get it posted here. If not, I will have Rhonda give her description here of the segment they did as she heard more of it and would know much more about it. Sept 30, 2007 The McKinney Courier Gazette Newspaper was out at Spencer's birthday party with the band on Friday afternoon and the article is in the paper today. You can click here to see the article. One thing we didn't realize until we read the article is that the shirt they gave us at his party was Spencer's actual band shirt. They had his name on the shirt order list prior to that weekend and he passed before the shirts were delivered and they decided to have everyone sign his shirt when it was delivered and give it to us. It is an incredibly special gift. Oct 15, 2007 Saturday was the Plano East Marching Festival. There were 32 bands there and we placed 15th. All in all not bad as our school has an enrollment of just under 1300 students and more than half of the bands there have enrollments of 5000 to 10000 students. One of the bands was marching over 400 students. Our color guard did finish 2nd and overall the band did very well. It was definately there best performance of the season. Wednesday is UIL marching contest and then we should hopefully get a bit of a break and not be quite so busy. Saturday was the 2 month anniversary of Spencer's passing. Was probably more difficult than the 1 month. As Rhonda put it, It's strange how 2 months can seem like an eternity and yet you know it's just the beginning. I didn't have a very good morning, and I think Gary was kind of the same way, but we had pulled ourselves together a bit and then the Flower Mound band came out and the announcer announced they were marching to the music of Queen. (Spencer's favorite band of all time) I can't tell you how many times Spencer and I discussed putting together a half time show to Queen music. Anyway, I sat and cried through the whole thing...they did a wonderful job. People around us probably thought I was one of those moms that REALLY gets in to their kids performances! I told Gary, we could have done without that, but wouldn't have missed it for the world. We did get a call Wednesday letting us know that Spencer's marker had been placed. I wasn't sure what to do about getting a picture of it and putting it here, but so many people have asked that we decided to put a couple on here. You can see them by clicking here...... here...... and here. I didn't put them on the photo page so that nobody would get to them by accident if they didn't want to see them. Oct 25, 2007 The first McKinney North School Newspaper was printed today and it had an article about Spencer in it so we thought we would put it on here so you all could read it if you want to. You can click here to see it. If that one is too small to read, click here to see a larger version, but you will have to use the scroll bar to see all of it. Dec 6, 2007 This is just a little something I wanted to let everyone know about. Monday we got a phone call from the school. They are honoring all freshmen that kept a 4.50 GPA for their entire freshmen year. They had a ceremony last night and presented each of them with a cord. They wanted to know if we wanted to accept Spencer's cord for him. Kind of like shocked us a little, but I told them we would be honored to accept it for him. Can you believe he made this with all the school he missed and being on chemo half of the year. Incredible. Anyway, just thought I'd share with you all and there are a few pictures over on the photo page of the night. Dec 21, 2007 We received this poem today and wanted to share it. MY FIRST CHRISTMAS IN HEAVEN I see the countless Christmas trees Around the world below, With tiny lights like Heaven’s stars, Reflecting on the snow The sight is so spectacular, Please wipe away the tear For I am spending Christmas with Jesus Christ this year. I hear the many Christmas Songs That people hold so dear, But the sounds of music can’t compare With the Christmas choir up here. I have no words to tell you, The joy their voices bring, For it is beyond description To hear the angels sing. I know how much you miss me, I see the pain inside your heart, But I am not so far away, We really aren’t apart. So be happy for me dear ones, You know I hold you dear, And be glad I’m spending Christmas With Jesus Christ this year. I sent you each a special gift, From my Heavenly home above, I sent you each a memory Of my undying love. After all love is a gift More precious than gold. It was always most important In the stories Jesus told. Please love and keep each other As my Father said to do. For I can’t count the blessings or love He has for each of you. So have a Merry Christmas and Wipe away that tear. Remember, I am spending Christmas With Jesus Christ this year. Feb 6, 2008 Rhonda and I just got back from a very exciting meeting. Some of you may have seen the link on the main page to the Spencer Taylor Memorial Scholarship. We haven’t said much about it because we are just now putting the information together, but we had our first meeting today about a fundraiser we are trying to put together. Darren McGrady, (click here to get to his website) who was a senior chef to the Royal Family at Buckingham Palace for 11 years and then personal chef to Princess Diana for four years until her tragic accident, met with us today and wants to set up a fundraising event for the scholarship. We are in the very beginning stages of planning, but this is a basic description of what Darren would like to do. Darren and about 5 other celebrity chefs would prepare a 6 course gourmet meal for about 50 people. We would have the event at the Culinary School at Market Street where I work. There would be an initial reception for about an hour where the chefs would prepare and serve canapés and sample some fine wines. This would be held in the upstairs dining room outside the culinary school, tickets would be around $30.00 and all attendees would have the opportunity to meet and visit with the 6 chefs. We would like to have the McKinney North Jazz Band providing entertainment for the reception and in between courses for the meal. After the reception, folks who purchased tickets for the reception as well as the 6 course gourmet meal tasting would then move into the Culinary School. Tickets for the entire evening will probably be $150.00, only 48 will be sold, and the 2 prime front row seats will be raffled off in the weeks leading up to the event. Darren thinks he might be able to convince Gary Cogill, host of Good Morning Texas, to emcee the event. The night will unfold with each chef spending about 20 minutes demonstrating the preparation of his course and then serving a sample to each attendee. The courses will be appetizer, salad, soup, fish, meat, and dessert. While each chef is preparing their portion, the other 5 chefs will be either helping or heckling the chef that is working. Each attendee will taste all of the courses along with a nice wine pairing for each and at the end will receive a goodie bag with some gifts and a copy of each of the recipes prepared that evening. Our goal is to raise $15,000 initially, as that will provide enough of an endowment to fund a scholarship each year into the foreseeable future. Darren has contacts with the food editors for the local cities magazines – Dallas, Plano, McKinney etc., and he has some TV appearances coming up where he should be able to get the initial word out advertising the event, he will also be able to give the address to this website through those outlets, so folks who may not be able to attend the event can still donate to the scholarship fund through the page that is set up. Needless to say, we are a bit overwhelmed by all of this right now. We had initially sent out a request for Darren to provide something for the bands silent auction tomorrow night, but we were blown away when he called and said, why don’t we try something else and see if we can make it a bigger deal. Remember though that this is all in the early planning stages, we hope to have most everything finalized by the end of February and the event on September 7th. As more details emerge we will post them here and I will try soon to get the scholarship page updated to showcase the event as we get everything finalized.