March 14, 2006 Woo-hoo! The doctors say that it looks like engraftment is taking place. Engraftment usually occurs between 14 and 21 days post-transplant. Today is day 11, so apparently Zach is on the fast track! We will keep you updated. March 13, 2006 Zach is doing pretty well. The doctors have been pretty happy with his labwork and despite some minor complications, things seem to be going according to plan. He is now producing white blood cells again, though it is too early to tell if they are his or from one of the umbilical cords. We hopefully will know that within the next week or two. Keep your fingers crossed that they are coming from the stem cells! We will update the website as soon as we know anything more. As far as Zach's spirit, despite being quite miserable physically and confined to a single room, he is still the feisty little guy we all know and love. He is sleeping quite a bit, but when he is awake his spirit (even when he is grumpy) truly shines through. We are hopeful that his strong spirit will see him through this ordeal. We will post more news as it comes. Thanks for checking in. March 5, 2006 Zach received his transplant on Friday. He is sick now, but all things considered, he is doing fairly well. He has not yet lost his hair or developed mouth sores, two of the definite side effects of the chemotherapy. The doctors have told us that it usually takes 4-5 days after this type of chemotherapy is finished to experience those side effects. Now that the chemo is over and the transplant has taken place, we are just waiting for him to get better. He will probably stay pretty sick until engraftment takes place, approximately 14-21 days post-transplant. Please keep your fingers crossed for Zach that he starts to feel better soon! February 26, 2006 Zach began chemotherapy on Wednesday and so far, so good. He threw up a little yesterday, but otherwise he has yet to experience any side effects. He has today off from chemo and will begin again tomorrow with the more aggressive medicine that is sure to produce lots of side effects. He is still in good spirits and enjoying spending lots of time with Dad and Grandma, although it is no fun to be stuck in his hospital room. He is really glad that he is still hearing from friends! So, more chemo this week and the transplant will take place on Friday. Keep thinking good thoughts! February 22, 2006 On Monday, Zach, Carl and Louise were enjoying the last day of a three-day, appointment-free weekend when they received a call from Dr. Tolar at the University of Minnesota asking if they could come in and meet with him. Dr. Tolar had reviewed the results of all of Zach's diagnostic evaluations and decided that there was no need to wait another week to admit him. Zach was then admitted on Tuesday and underwent surgery to insert a Hickman line into his chest. He will now receive all medications and chemotherapy directly through his Hickman line. The surgery went smoothly and Zach began chemotherapy today. His transplant is now scheduled for March 3. In other news, Griffin's winter carnival for Zach went very well and raised a lot of money. Thank you so much to everyone who participated in and supported the event. Also, we have obtained an employer identification number from the IRS and are working on obtaining recognition as a tax-exempt non-profit organization so all your donations can be tax-deductible. We will pass on more information as soon as we know anything. February 17, 2006 Zach and Grandma got to Minnesota on Tuesday as planned and it is freezing here! Right now they are in the pre-transplant phase of constant evaluations by different specialists. The days have been long and the appointments are tedious for Zach, but he has been a trooper. On Thursday, an unexpected complication arose. Zach had broken a tooth back in December and it had been fixed quickly. However, on Thursday, that tooth decided it wasn't finished yet and an infection became obvious. It was clear that Zach was in a considerable amount of pain and the tooth needed to be tended to immediately, pushing back several other appointments. Today he is feeling much better, though he was still vomiting this morning. According to the nurse coordinator, the plan at this point is for Zach to be admitted on February 27th. He will undergo 10 days of agressive chemotherapy and if everything goes as planned, his transplant will take place March 9th. They have obtained 2 units of cord blood for the transplant. Although neither is a perfect match, the requirements for cord blood matching are less stringent than those for bone marrow from adult donors. Keep Zach in your thoughts and we will keep you posted... February 12, 2006 Zach was supposed to leave tonight for Minnesota. Unfortunately, due to the heavy snow, his flight was cancelled. He will be leaving on Tuesday morning, complete with a K-9 Unit police escort from the Hudson Police Department. He is very excited about that part! Carl is already in Minnesota getting settled into the apartment and arranging appointments at the hospital. Zach will be an outpatient for a week before they begin chemotherapy. In other news, the school has created Zach's Spirit wristbands that they will be selling to raise funds. As this process starts moving, the updates are sure to be fast and furious. Please keep checking back. February 7, 2006 Since the last update Zach had a bad fall down the stairs. He suffered a concussion and some loss of vision. He was hospitalized for 5 days and although they took 2 x-rays, the doctors are unsure as to whether or not his right leg is fractured. As a result, his walking has deteriorated substantially. However, his vision has returned and his spirits are as high as ever. We are still waiting for the insurance issues to be figured out before we will know when Zach is going to be in Minnesota. We are really hoping that it will be next Monday, but unless the doctors receive authorization by tomorrow to re-type the cord blood they have found, it will be pushed back to the 20th. Carl has lined up an apartment in Minneapolis so at least they will have somewhere to head to whichever day they end up going. We will keep you all updated. January 28, 2006 Zach has been on the medicine for a little over two weeks now and he is experiencing a slight reduction in his symptoms. His last audiology test showed that he is hearing better than he was in December and his walking and speech have also improved. Last night he took a shower for the first time in months and was even able to wash his own hair without falling once. (He had been taking baths because he was too unsteady to stand for long enough to shower.) Also, we have learned that the doctors in Minnesota have found some cord blood that appears to be a good match. They are re-testing it which will take a week to ten days and have asked that Zach be in Minnesota on the 13th or 20th of February for preliminary testing. There are minor insurance issues that need to be worked out before Zach and Carl can head to Minnesota and Carl is trying to find an apartment near the hospital. Unfortunately, the hospital won't assign a social worker until the insurance issues are taken care of. If anyone has any knowledge of the area or advice on finding an apartment close to the hospital, please pass it along. A dinner dance fundraiser was held in Hudson on January 20th and it was a huge success. Thanks to everyone who helped make it happen and to everyone who came out. Your support means more than you know. January 15, 2006 Here's the latest...Zach and his immediate family had blood drawn last week to determine if anyone in the family is a 100% match. It takes about two weeks to have the results so we are hoping for an answer around the 25th. In the meantime, Ashley's test to determine whether she is a carrier of the ALD gene came back inconclusive. They are re-testing her blood and hopefully will have the results within two weeks. Also, Zach's school is planning and conducting several different fundraisers. We are so grateful for the support of the school and the community. It is really overwhelming how much people are willing to help. As soon as we know anything more about the transplant we will be sure to pass the news along. Thanks for checking up! January 6, 2006 MORE GOOD NEWS! The commissioner of the NH Department of Health and Human Services called Carl today and told him that they have approved the procedure and the insurance WILL pay for it! We are so excited. Also, Dr. Charnas in Minnesota is in the process of coordinating blood typing with Zach's physician in New Hampshire. It is great that the process is finally starting. One more bit of good news...Zach started on the new medicine on Wednesday and already his speech has improved slightly. We are hopeful that the medicine will slow the progression of the disorder and possibly even reverse some of his current symptoms. Remember to keep checking back and remember that donations are still important as the length of hospitalization will be 6-8 months. Thank you for your support! January 4, 2006 GOOD NEWS! The doctors in Minnesota have decided that Zach IS a candidate for a bone marrow transplant. He is currently in the hospital being started on the new drug that they are working with. Carl, Ashley, and Zach's mom are going to be tested for blood type this week to start the process of finding a suitable donor. Now that he has been approved as a candidate, the next step is making sure all the medical expenses are paid for. Carl is planning to go to the governor's office tomorrow to try to expedite the process. As it stands, the insurance office told us they would need 6 weeks to review the situation. Unfortunately, as you all know, we don't have 6 weeks to wait around with this disorder. Keep checking back...now that Zach has been approved the news should keep coming quickly! December 31, 2005 Happy New Year! Zachary and Carl met with the doctors at the University of Minnesota yesterday. At this point we are expecting a decision on Wednesday about whether or not they will perform the surgery. However, they are currently trying out a new drug which decreases inflammation in the brain to increase the success of the transplant. Zachary will only be the third person that they have tried this drug on. We are planning to start him on the medicine next week, as it has been shown to have the potential to reduce symptoms of ALD. We are hopeful for a positive outcome. Thank you for keeping us in your thoughts and prayers. December 27, 2005 Zachary and Carl left tonight for Minnesota to meet with the doctors at the University of Minnesota Children's Hospital. They are going to evaluate Zach for a possible bone marrow or umbilical cord blood transplant. We are praying that everything goes well and that they will go ahead with the transplant. The biggest issue at this point is money, as we do not yet know if Zach's insurance will cover any of the procedure. Your donations and support are appreciated! We will keep you updated. -------------------------------------------------------------------------------- August 15, 2006 We received the results of Zach's skin biopsy and unforetunately the test told us nothing. It said it was undetermined dermatitis not consistent with graft vs. host. Dr. Orchard is nonetheless still convinced that it is gvh and so for now the Gengraf stays hopefully the taper will start again soon. We are still planning on going home the 26th of August and are very excited about that. Please look at the fundraiser page for an upcoming golf outing. Thanks to everyone for their continued support. August 5, 2006 Zach saw Dr. Orchard last Monday. He told us that he is now convinced that the rash is in fact GVH and upped the Gengraf dose again.He also mentioned that perhaps we shouldn't rush to buy our airline tickets to go home because he would like the skin issue under control before we leave. We have, however, purchased our tickets for Sat. August 26th we can change them if we have to but hope that won't be the case. Zach had a skin biopsy done on Tues. the 29th. It takes 2 weeks to get the results so we should know on this coming Tuesday if it is GVH for sure. His skin continues to look better everyday and his labs continue to be good. He did awesome on the treadmill yesterday and it was great to see. No progress yet on eating or drinking.Please keep Zach in your thoughts and prayers. Thanks July 22,2006 Zach saw Dr. Orchard last Monday. The rash we thought was going away came back. They really don't know what it is and so as a preventative measure they stopped the Gengraf taper and upped the dose for now. Until they can rule out graft vs. host as a cause for the rash he needs to continue to take it. Once the rash issue is settled we can start the Gengraf taper again. Zach still has no interest in eating or drinking but we keep trying. His labs are good and he is doing well at therapy. They have been putting him on a treadmill and one person on each side of him moves his feet for him to give him the sensation of walking. His six month appointments are all made and we still plan on coming home at the end of August. We purchased a leather recliner for his bedroom at home. He's very comfortable in the one here and it makes a great "hospital bed" and is much easier to clean.We will be seeing Dr. Orchard again this Monday. July 10,2006 Things in Minnesota are going well. Zach's labs have been good, not perfect, but good enough so that he has been going to clinic once a week the last few weeks, Hopefully, that trend will continue.He continues to get stronger and make progress at pt. We now have a stander at the apartment so that we can work on his standing and free up time at pt for other things. We have started making his appointments for his six month check-up. The goal is to have the last appointment on August 25th so that we can bring him home that week-end. Carl's girlfriend, Denise, went for a visit from June 29th to July 7th. Carl's Dad and brother Derrick went out on July 5th and are staying until July 13th. Zach's not eating or drinking yet but we're hoping that that will change after his last dose of Gengraf on August 7th. Thanks to everyone for keeping Zach in your thoughts and prayers. June 18, 2006 Our Thursday appointment with Dr. Charnas was very interesting. He told us that the MRI shows that the ALD in no longer present--only the damage that it caused remains.However, the hearing and motor skills portion of his brain shows slight improvement. That was really great news.His magnesium was still low and they gave him some intravenously over the course of two hours. The next day it was still low so they increased the dose again. We went back today,Sunday, to have it checked and it was still low and we ended up being there for three hours so that they could give him another infusion. They told us that Gengraf eats up both potasium and magnesium so hopefully the problem will go away as he takes less and less of that nasty drug. He has been more alert and has been laughing alot more the past four days. His laughter is a wonderful sound. June 13, 2006 Zach's 100 day appointment on June 7th was disappointing. They told us the only drug he could stop was levoqin which is an antibiotic. His labs showed low potassium and magnesium and gave us a prescription for each of those. After we left clinic we met with Chase and his parents. Chase was the first Ald boy on Mucomyst and his transplant was three months before Zach's. They live in Indiana and were here for a six month check-up. Zach had his 90 day MRI on Friday and we'll get the results on Thursday when we see Dr. Charnas. His Friday labs showed that both the potasium and magnesium were still low so they increased the dosage and told us we had to go back on Sunday to check them again.On Sunday the potasium was good but the magnesium was down and they told us to up to dose again and come back on Tuesday which is today. When we went today we fully expected them to re-admit him--he had a bit of a temp and his zoster rash is back and looking nasty. It was a much better visit than we expected. They increased the dose of acyclavir for the rash and told us to keep a close eye on it. Then they said that he could stop taking fluconazole and they gave us a schedule to start tapering the genraf (that's the nasty one). We were very happy about that. His last dose will be August 7th. We go back on Thursday for labs and to see Dr.Charnas. We'll keep you posted. June 5,2006 Sorry for the lapse in updates. Zach's rash was indentified as zosters which related to chicken pox. He was discharged from the hospital (again) on May 20th but is still on an intravenous antibiotic for the rash.His labs have been very good. On May 31st they inserted another feeding tube since we had no luck with the last one. So far so good. If it doesn't work this time he will have to have a tube surgically implanted and we'd like to avoid that. He's still not eating or drinking anything but we keep trying.Day +100 is on June 11th (hard to believe)and our appointment for this milestone is this Wednesday. They will tell us which drugs he can stop taking and hopefully give us a schedule to taper-down his gengraf which is a nasty drug. May 16, 2006 The good news is that Zach is making platelets. The bad news is that he is back in the hospital. He has a mysterious rash and a fever and his white blood cell count has been very high. Hopefully we will know more tomorrow about what exactly is going on. May 15, 2006 Today Zach vomited up his feeding tube on two different occasions. As a result, the staff at the outpatient clinic made the decision just to remove the feeding tube altogether. Later this evening he drank a Boost and as of 9:00 pm had still kept it down. Hopefully his stomach will begin to adjust to having to work again and he will be able to eat and drink without throwing everything right back up. He is definitely producing his own platelets so that is a great sign. However, his white blood cells have been extremely higher than average the last few days which may be a sign of infection. Please keep Zach in your thoughts and prayers. Let's hope that he begins successfully eating and drinking very soon! May 13, 2006 Zach was released from the hospital yesterday and he is resting comfortably back at the apartment. They did decide to put a feeding tube through his nose so that his stomach can get used to digesting again. He has today off from the clinic but he will go back tomorrow to receive platelets. He didn't receive any platelets during this last stay in the hospital but it seemed as though he was starting to produce his own again which is a good sign. We will keep you updated when there is more news. May 10, 2006 Since the last update, Zach has experienced a bit of a setback. He was hospitalized on Sunday night due to a fever. It turns out that he has a touch of pneumonia. They are giving him antibiotics and if the fever doesn't return he should be able to return to the apartment in 48-72 hours. He is definitely not happy to be back in the hospital so we are all hoping that the fever doesn't return and he can be released very soon. May 3, 2006 Zach had a great day today! He did a great job at physical therapy, despite saying that he was going to call 911 and have everyone arrested because he didn't want to be there. That's Zach's spirit for you! He also said that he wants to go home and see his friends. Today was also the first day since before the transplant that he didn't nap. Today was an amazing day and it really seems as though things are moving in a positive direction. :) May 2, 2006 We received the results of Zach's 60-day MRI today. Unfortunately, because of the ALD, it is impossible to tell whether his vision problems are a result of the disorder or a side effect of medication. However, there was some good news. Dr. Charnas compared the MRI side by side with Zach's November 2005 MRI and the more recent picture showed definite improvements in the area of the brain responsible for hearing. Also, yesterday Zach had the day off from the outpatient clinic and he has the day off again tomorrow. It is definitely a welcome relief for Dad and Grandma as well as a very positive sign. So, despite everything, Zach really does seem to be getting a little better each day. Thank you to all of our friends for keeping Zach in your thoughts and prayers. Your support means the world! April 30, 2006 Since leaving the hospital, Zach has been getting a little better each day. He has been eating jello the past few days, which is very exciting because he had not eaten any solid food since before his transplant. In fact, the doctors were considering inserting a feeding tube through his nose so that his stomach could get some exercise, but he decided to eat that jello just in the nick of time! On Friday he underwent his 60-day MRI. This MRI will also tell us whether his vision problems are a side effect of a medication he is on or a result of the ALD. If it is a side effect of medication, the problem should correct itself once he stops taking it. We are hoping for some good news on that so keep your fingers crossed! Also, Zach had his first day off from the outpatient clinic on Wednesday so that is a very positive sign. We should receive the results of the MRI on Tuesday or Wednesday, so we will pass on the news as soon as we know! As always, thanks for thinking of Zach. April 18, 2006 Zach has been discharged from the hospital. He is home (at the apartment in Minnesota) now and going into the outpatient clinic daily. Though he does seem more comfortable at the apartment, he is still having a hard time. He is still passing blood clots intermittently which causes a lot of pain. Also, it is unclear whether he is able to see at all, though his vision seems to be coming and going. He is still not eating or drinking anything; he is receiving all of his nutrition and hydration intravenously. He is taking oral medication though, which is a positive step. Everything is up and down and all around, but that is to be expected. Check back later this week for some pictures of Zach. Thanks for keeping Zach in your thoughts and prayers ! April 11, 2006 We received the results of Zach's 30-day MRI and it is good news! It appears that Zach's brain is actually showing improvement since his transplant. We could not have hoped for a better outcome of that test! However, at this point it is hard to see the effect of the improvement in action, as Zach is still in quite a bit of pain. Please keep Zach in your thoughts and prayers and hope that the rest of his journey to recovery is smooth. April 3, 2006 The good news is that Zach's white blood cell count continues to climb. All of his numbers look great and as Grandma is fond of saying, "he looks great on paper." However, the bad news is that he is in near-constant pain. His right knee remains extremely swollen and his right elbow seems to be causing him pain as well. He is currently on antibiotics to take care of the infection. In addition, they have increased his pain medication to help him cope. Tomorrow will be Zach's 30-day MRI. They will compare the results to the MRI that was taken on the day of the transplant. Historically, boys with ALD go a little backwards during the transplant process so we are really hoping to see no changes. We'll update you with the results of that as soon as we know. March 30, 2006 A test confirmed that Zach's white blood cells are all from one of the donor cords which means that he has acheived 100% engraftment! While that is great news, he is still battling some other problems. His knee swelled up the other day and it has proven to be an infection. We are hopeful that antibiotics will take care of the problem. Unfortunately, his knee and his bladder are still both causing him significant pain. Despite the other problems, though, the news of engraftment is definitely something to smile about. Keep checking back and we will keep you updated on Zach's progress. March 26, 2006 After the last update, Zach's white blood cell counts went back down. After staying low for a few days, they are now going back up steadily. Currently, his white blood cell count is 0.9. Normal is between 4 - 11. Once his white blood cell count reaches 1.0, they will conduct a test to determine whether the cells are his or from one of the cords. We hope that they will be able to do the test tomorrow, as the results take 4-5 days to process. Hopefully this will be our last major hurdle and then it will be smooth sailing on the road to recovery! Otherwise, Zach is doing pretty well. He is still sleepy alot, but he is starting to sprout some new hair, which is exciting. The one unfortunate side effect he is experiencing is blood clots in his bladder. Unfortunately, there is really no way to treat them and he just has to endure the pain and pass them when he goes to the bathroom. That is putting him in a lot of pain and hopefully all the clots will be gone soon! Anyways, keep your fingers crossed that his white blood cell counts keep rising and that the upcoming test proves them to be from one of the cords! Thanks again for all your support of Zach!