tag:blogger.com,1999:blog-5794177705977144592024-03-14T02:11:04.193-04:00CURING EZRAHelp4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.comBlogger139125tag:blogger.com,1999:blog-579417770597714459.post-26508157402477285202016-08-28T22:57:00.001-04:002016-08-28T22:57:24.228-04:00Third Transplant Anniversary!Last week we celebrated Ezra's third anniversary of his second transplant! What a year it has been! School, camp, friends, travels and adventures - every day a miracle thanks to his miracle donor. The memories and emotions of transplant day are still strong: watching with tears flowing down our faces as Ezra's doctor slowly pushed the syringe of cells into his line, knowing that his life and our lives depended on those cells. Endless gratitude that those cells did their job and we now have a healthy, strong boy who is loving life. Ezra had the best summer loving every minute of camp. He came home each day happy as can be and full of stories about all the new activities he tried and lessons he learned. We head to Sloan tomorrow for the first time in over two months - by far the longest time we've been away from Sloan since Ezra was first diagnosed. We're hoping that what we see on the outside will match whatever is going on inside (and that Ezra will handle his first needle stick blood draw in over 4 years without a line 😁). Our hearts are full of joy as we reflect on this past year and look forward to the next one. May it be another year of miraculous moments and good health!<div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-Y9oGhUVA1tM/V8Okk4118GI/AAAAAAAAAsc/pgWDc29oIzc/s640/blogger-image-765608685.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-Y9oGhUVA1tM/V8Okk4118GI/AAAAAAAAAsc/pgWDc29oIzc/s640/blogger-image-765608685.jpg"></a></div><br></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com0tag:blogger.com,1999:blog-579417770597714459.post-54019146860351645732016-05-15T13:11:00.001-04:002016-05-22T20:35:31.116-04:00Finding His Voice<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">We know that it has been quite a long time since our last update, but it It has been for good reason - we are happy to report that Ezra is doing very well! He made it through the cold and flu winter season - with his share of infections - and his immune system is a bit stronger for it. Ezra’s new immune system is doing well with fighting off infections, but it is still new and with no prior exposures, infections tend to be a bit worse and take a bit longer for him to completely fight off. That should change with time. All measures of his immune system function are good, and, even better, he has responded to all vaccines he has received so far! The last check of his donor chimerism showed that he remains 100% donor in all cell lines. His doctor is quite happy with his immune system and so are we. </span><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">In fact, Ezra’s doctor is so happy with how he is doing that he is scheduled to have his port removed possibly this week or in a few weeks if his current illness doesn't clear in time. Ezra was scheduled to have it removed last month, but the surgery had to be postponed because we found out that Ezra is once again iron deficient. After running some tests to make sure there is no hidden reason for the recurring iron deficiency, Ezra’s doctor thinks that his total body iron stores continue to be depleted from all that he has been through with transplant and the complications following transplant, along with the continuing need for blood draws. He has received treatment with IV iron and we started an oral iron supplement with the hope that we can boost him to a higher level and then keep him there without relying on IV iron going forward. Removing his port will be another huge milestone, although no doubt about it - that port has been a lifesaver for the past four years and we are letting it go with some trepidation. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Ezra knows that his port is coming out and he is processing the news day by day. We typically have not shared medical news like this with Ezra far in advance because it caused too much anxiety and he did not have a good handle on the passage of time. But he is older now and his understanding of his world is constantly maturing. He was initially upset about the surgery, but is now excited that his port is coming out. Most interesting of all, for the first time, he has told HIS story to HIS friends. Ezra has never really wanted to talk much about transplant and all he has been through. He came home from school the other day and said that he told his friend at lunch all about his port and “the whole story.” I asked him to tell me what he said and after some coaxing, he started with, “well, I said that when I was born I had a little bit of a problem with my cells..."and he continued to tell his story in his words. It was amazing to hear him find his voice. We can’t wait to see how his story and his understanding of this journey changes and shapes him as he grows.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The surgery will only go forward if Ezra is in good health. We warned Ezra that the surgery may get postponed again and he interrupted to say, “I know, I know, life is unpredictable. Life is like a pop up show. You never know what’s going to pop up.” And with that, he summed up the lessons we have learned over the past 7 years. The surgery will be difficult for Ezra and difficult for us. The surgeries have always been the most difficult for us. But we will keep our eyes on what it represents - another sign of life and good health. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">With our joy in how well Ezra is doing comes sadness in the suffering of other children we have met during this journey. We recently lost two beautiful young boys who had become our friends during the challenges of the past years. And there are others who are fighting for their lives right now. We share in their parents' anguish. Every moment that Ezra lives is all the more precious knowing how terribly difficult the quest for good health is for these boys. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">We are finally daring to look forward (although not too far) to a summer full of "normal" seven year old activities planned for Ezra. First grade is coming to an end (what? how?) and our little man is loving exploring the world bit by bit. He is our miracle and we are filled with ever constant gratitude that we are his parents. </span></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-MpQN18JJPkY/VzityPO_kyI/AAAAAAAAAsE/IGw6bIcV1yI/s640/blogger-image--657811740.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-MpQN18JJPkY/VzityPO_kyI/AAAAAAAAAsE/IGw6bIcV1yI/s640/blogger-image--657811740.jpg"></a></div><br></div><div><br></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com4tag:blogger.com,1999:blog-579417770597714459.post-78341699333102800072015-11-27T09:52:00.001-05:002015-11-27T15:40:15.023-05:00Gratitude<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Thanksgiving 2015 and we are blessed to have so many reasons to be thankful. The past 8 months since we found out that Ezra's new immune system is functioning have been full of miraculous moments of normalcy. Ezra is not just surviving, but thriving. In what now feels like the blink of an eye, he is a happy first grader surrounded by adorable friends and classmates. We are often left shaking our heads in wonder, thinking "how did this happen? <br><br>Since our last blog post, Ezra has entered first grade and has adjusted better than any of us ever expected. He marches into school every morning - first with a stop for lots of kisses - and then without a single glance back. He now understands what it means to learn with a class; to raise his hand; to eat lunch on his own; to play at recess; and all the other small wonders that come with going to school. From the start, Ezra seemed to have no issue joining his classmates in games at recess and chatting at lunch. He loves having play dates and sharing his toys with his friends. We were so scared that we had ruined other kids for Ezra with our germaphobic fears. All the times when we were at the park and another child would come near us and we herded Ezra away or when we ran in the other direction when we heard a cough remarkably seem to have had no effect him. It is as if the connection to other kids has been in him all along - he just needed permission to let it out. Yes, there are some experiences that he may not be ready for, but that list seems to dwindle each day. There is nothing that makes our hearts soar like when we see him playing with his friends.<br><br>Health-wise, school has been challenging. Ezra has gotten cold after cold since starting school. Unfortunately, this is a necessary part of having a brand new immune system. What other kids go through as babies and toddlers with coming down with illness after illness, Ezra now has to go through as a six year old. Thankfully, with the help of regular hand washing, he has not yet had any serious infections and has required antibiotics only once so far. We still go to clinic once a month for labs, vaccines and a check up. The fantastic news is that Ezra has responded to additional vaccines. He has one rocking immune system! We are getting close to being done with catching him up on his vaccines, which will be very welcome news for Ezra. Aside from a few minor issues, he is doing very, very well. He still has his mediport, which means he remains on a fever alert, and we remain cautious about infection. The more time we spend away from the hospital, the more difficult it is to deal with an emergency trip back, so we continue to do what we can to keep him safe. We are hoping that the port comes out in the upcoming months, but there's no set time frame at this point. <br><br>Fitting for the holiday, we spent today at the place we are most thankful for and with some of the people who gave us all the reasons to be grateful - Sloan-Kettering. Admittedly, we didn't always feel so grateful for this place, as it's often hard to see the positive when everything is so scary and uncertain. But we have always been thankful that the chance for a cure for such a rare disease even exists and that medicine and science have figured it out - as imperfect and difficult as that cure may be. <br><br>We don't need a holiday to feel gratitude for Ezra's donor. We thank her every time Ezra fights off a cold, when we find out that he has made antibodies, and each morning when he opens his eyes. We send her constant love and gratitude wherever she may be. <br><br>The other day, Ezra heard the word "resilient" in a video and asked what it meant. I told him that resilient means that you can go through something very hard and get through it and keep on going with good spirits. He said, "oh, like the kid at the park who fell off the swing and then got right up?" I said "yes, exactly, but there is someone else I know who is very resilient." I told him that he is resilient and he had no idea why. When I said that going through two transplants is a very hard thing to do, his response was "I guess so." And that is exactly the kind of response we always hoped for - that his memories of how much he suffered during transplant would be vague or non-existent. May the memories of beeping machines and isolation gear forever be replaced with moments of laughter and love shared with friends and family. And today at clinic, Ezra said, "I'm very resilient, aren't I?" Yes, Ezra, you are. <br><br></span><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-FTNWEy11R6w/VlhuL5IqccI/AAAAAAAAArg/SVw6d3ue52g/s640/blogger-image-1969975368.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-FTNWEy11R6w/VlhuL5IqccI/AAAAAAAAArg/SVw6d3ue52g/s640/blogger-image-1969975368.jpg"></a></div><br></span></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com8tag:blogger.com,1999:blog-579417770597714459.post-42688045697389995412015-10-10T23:04:00.001-04:002015-10-10T23:04:04.227-04:00Team Ezra - Walk for Life 2015<div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Just six months ago, we received the miracle news that Ezra's new immune system, made possible by his miracle donor, had started to function. With that news, Ezra has been able to begin to live as a "normal" six year old, attending school and playing with friends - activities that were previously forbidden. Watching Ezra enter the world has been magical and miraculous. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">None of this would have been possible without Ezra's donor. As those of you who have been with us on this journey know, there was a time when we thought Ezra would never have the chance to be cured because there was not a single donor among the 25 million donors worldwide who was a suitable match. It is our greatest hope that no other family has to go through the desperation we felt when the doctors told us that our son's chance for a cure depended on a donor we did not have.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">To help achieve this goal, we will once again be forming Team Ezra sponsored by our synagogue Congregation Ahavat Achim for the Gift of Life Walk for Life. This year's 5K walk/run will be held <a dir="ltr" href="x-apple-data-detectors://0" x-apple-data-detectors="true" x-apple-data-detectors-type="calendar-event" x-apple-data-detectors-result="0">on Sunday, October 25</a> in Saddle River Park in Paramus, NJ. It is a family-fun, beautiful event that includes a donor-recipient meeting. Funds raised will go toward adding donors to the registry. For every $60 raised, one donor is added to the registry with the potential of saving a life.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">We would love for you all to join us! Ezra is very excited to see Team Ezra in action once again!</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">You can join the team and set up your own fundraising page here: </span></div><div><a href="http://support.giftoflife.org/goto/teamezra2015" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000">http://support.giftoflife.org/goto/teamezra2015</font></a></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Or please consider donating to our family team here: <a href="http://support.giftoflife.org/goto/ezra">http://support.giftoflife.org/goto/ezra </a></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">We are forever grateful to all of you for your unending support of our family over the past 6 years.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Love,</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Robin, Evan and Ezra</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-w-qlt2AJ5_I/VhnRoXqFRJI/AAAAAAAAArI/KspTdDtev5w/s640/blogger-image-963181115.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-w-qlt2AJ5_I/VhnRoXqFRJI/AAAAAAAAArI/KspTdDtev5w/s640/blogger-image-963181115.jpg"></a></div><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com0tag:blogger.com,1999:blog-579417770597714459.post-33865887308893509732015-08-23T14:46:00.001-04:002015-08-23T20:38:06.579-04:00Two Years: A Miracle Unfolding<div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Today we celebrated the two year anniversary of Ezra's second stem cell transplant. For the first time, it felt like a true celebration. It finally feels like we have reached the "other side" of this journey, and it is time to move forward with our lives and away from the shackles of Hyper IgM. We remember and honor the enormity of this day two years ago - the tears, the fear, the uncertainty and the unbreakable hope for a cure. Today we rejoiced in watching Ezra celebrate his transplant anniversary with cake and by doing something that was forbidden until now, something we never thought he would be allowed to do - swim! Finally, this was the year that made all the difference. <br><br>Instead of spending the majority of the summer in the hospital like the three previous ones, we have enjoyed a summer making up for lost time. We went on a day trip to the beach; visited a bunch of museums; enjoyed a special Yankees game; and rode the rides at an amusement park, among other incredible adventures. We didn't get up the nerve to go away overnight, but we'll do it soon enough. No matter where we go, the best part is always watching Ezra skip along, as carefree as any other child - no mask or gloves in sight (just lots of Purell). <br><br>And then there are all the normal, everyday "adventures" that we've missed out on all these years - like going shoe shopping in the mall or having a play date. In many ways, those are the more miraculous moments because they mean a normalcy that we fought so hard to obtain. <br><br>Medically, Ezra is also having the best summer ever. For the past two months, he has had "no red flags" CBC's for the first time in his life. His other labs are also coming along nicely. Ezra is continuing with the vaccination process. We do not yet know if he is responding to the vaccines that have been given since the first series where he showed a response back in March. His doctor wants to wait until Ezra completes another series of shots before checking. Here's to hoping those new T cells and B cells are busy cooking up some antibodies. <br><br>In July, Ezra had his first appointment with the long term care team at Sloan. This team deals with the late effects of treatment and will follow Ezra for the rest of his life. It was difficult to focus on the many possible long term side effects of the chemo and other drugs that Ezra has taken over the course of two transplants. In the scheme of things, while the side effects are very serious, they also seem manageable compared to what we have been through with one exception- Ezra is at an increased risk for leukemia. We knew all of this when we made our decision to proceed to transplant, but yes, it is hard to hear it all again and think about "what ifs." <br><br>Ezra has been healthy, with the exception of a couple of colds this summer. They were thankfully mild and did not result in any fevers. So far, we are loving these new donor cells! Ezra still has his mediport, and as long as that remains, he remains on a fever alert where he needs to be rushed to Sloan for tests and IV antibiotics at first sign of a fever. And as long as the port remains, and until he is fully vaccinated, we remain vigilant about exposure to germs. <br><br>While these past few months have been full of unbelievable milestones, there are also challenges for all of us. Coming from a life of isolation, Ezra has faced some situations that understandably confuse and scare him. There are things we all take for granted that he just doesn't understand because he has no frame of reference. And what he doesn't understand tends to scare him. We know with time he will be able to handle these situations, but we have work to do in the meantime. <br><br>Unbelievably, in a week and a half, Ezra starts first grade. While school has always been the goal we strived to reach, this transition is going to be challenging in many ways. We know that it may take time for Ezra to build the strength and endurance to make it through a full day of school. For six and a half years, we have watched Ezra's every movement, always looking for signs of illness. It will be very hard to lose control over protecting him and to allow him to be exposed to the germs that come with a class full of kids. We are gathering up our strength for what will undoubtedly be a big adjustment for all - wonderful and terrifying all at once. <br><br>Today, we are thinking about Ezra's miracle donor and hope that wherever she may be, she is celebrating the gift of life that she generously gave to a little boy two years ago. We are also thinking about the tremendous support that our family has been lucky to receive from all of you. We hope to be able to someday fully convey to Ezra how a community of family, friends and strangers came together to save his life. We are also forever grateful to Ezra's doctors and nurses who still answer our worried questions with patience and knowledge. Last, our thoughts are never far from all the friends we have made along the way whose children continue to fight their own hugely difficult battles. <br><br>I recently came across the quote by writer Isak Dinesen that "all sorrows can be borne if we put them in a story or tell a story about them." In many ways, this is what this blog has meant to us. Thank you for sharing the sorrows and the joys with us. Here's to hope, to health, to miracles, to love and to life. Ezra is ready for all life has to offer!</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-UUtVuFmnL2o/Vdpm5lCixBI/AAAAAAAAAqk/HkkBHEqWZBQ/s640/blogger-image-748780534.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-UUtVuFmnL2o/Vdpm5lCixBI/AAAAAAAAAqk/HkkBHEqWZBQ/s640/blogger-image-748780534.jpg"></a></div><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br><br></span><br></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com12tag:blogger.com,1999:blog-579417770597714459.post-86214102629767022302015-06-22T21:38:00.001-04:002015-06-22T21:49:27.151-04:00Days of Wonder and Awe<div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">It has been a while since we shared a full update. The past two months since our last update have been full of miraculous new experiences and milestones. For those of you who do not follow Ezra's Facebook page, Ezra started kindergarten three weeks ago! He has been attending on a part time basis three days a week and doing really well adjusting to being in a class with other children - better than we would have ever imagined. Unfortunately, the school year is ending this week. We have treasured each precious day. There were many moments when we thought that Ezra would never make it to school. Getting Ezra healthy enough to attend kindergarten was always one of our goals in making decisions about Ezra's medical treatment. I remember crying in the hallway to Ezra's doctor and nurse after a setback last June when it became clear that he was not going to make it to school in September. His doctor said, "September may be out, but he may make it to school at some point this year." It hurt too much to believe her then, but happily her forecast came true. There are no words to fully capture how we feel about Ezra being school. We shared some of our thoughts and great pictures of Ezra's first school experiences on his Facebook page at www.facebook.com/help4ezra (you don't need to be on FB to view them).<br><br>Medically, Ezra's counts have been rock solid, which is so wonderful. He is dealing with a couple of issues that are side effects of his transplant and treatments. His skin has had dry, irritated patches the past few months. We have been using a combination of steroidal creams, which are thankfully working. Ezra's doctor thinks that he likely has a very, very, very, very mild form of Graft Versus Host Disease. We can't even think about those words without feeling panicky, but what is important is that his skin is responding to the creams and there is no need for oral steroids. When Ezra had GVHD, his skin was not responding to creams and required high dose steroids. This is not that situation at all.<br><br>The other issue relates to Ezra's eyes. We've known for a while that he has dry eyes from the high dose chemotherapy and transplant, and his eyes have also become increasingly sensitive. Ezra is at risk for cataracts and other eye issues from treatment. He has been seeing the eye doctor regularly, but we will soon be seeing a specialist ophthalmologist just to be sure there aren't any problems requiring further treatment.<br><br>Given all Ezra has been through, these are minor issues and ones we will gladly take in exchange for a working immune system and the wonder that comes with good health. We have started another round of vaccines. Ezra's titers will be checked in a couple of months to make sure that he has been able to respond to this next set of vaccines. He still has many vaccines to go before he is fully caught up, and that is not likely to happen until some time next year. Ezra is still very much struggling with the shots. The experts at Sloan are telling us that the way he is reacting and his perception of pain is common among children who have been under treatment for a long time, and especially those who have been under treatment since infancy. We are trying to think creatively to find ways to make the vaccine process less traumatizing.<br><br>The one piece of disappointing news is that Ezra's port will not be removed anytime soon. We were hoping he could have surgery to have the port taken out this summer. His doctor still wants regular labs and is not ready for the port to be removed. Ezra's port has been a lifesaver, but as long as it is in, Ezra remains on a fever alert where if he develops even a low grade fever we have to run to Sloan no matter what time of day for cultures and IV antibiotics. This is going to make life very tricky come September when Ezra is in school on a regular basis and exposed to more germs. Our fear is that we will be constantly running him to the hospital, which is what life was like before transplant. We will just have to see how it plays out and navigate from there. <br><br>For 6 years, we have lived in the land of the sick. Leaping into the land of the healthy has been wonderful, but has also meant adjustments for all of us. We are learning Ezra's boundaries - what he is comfortable with and what he does not comprehend - as well as our boundaries. At some point during this journey, a doctor told us that the young children end up forgetting all about what they went through during transplant, but the parents will forever look like deer caught in headlights. This prediction has rung true to a great extent, but what is most important to us is the hope that Ezra will not remember the pain and suffering he has been through. We will gladly be the frightened deer in order for him to be free. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The top picture attached to this post was taken at our front door the day Ezra was discharged from the hospital after nearly 3 months in isolation following the first transplant in 2012. We were so happy to finally be home, but also so scared and beaten down as we knew the graft was slipping and we were losing the transplant. We were coming back to a life of closed doors and more isolation. The bottom picture is in front of our door as Ezra left for his first day of school, three weeks ago. There is only overwhelming joy in this picture as we send Ezra off to a life full of open doors. </span><br></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-zjpl93feT6I/VYi3mOMMjzI/AAAAAAAAAqI/bYoi7pFAeoI/s640/blogger-image-1773917407.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-zjpl93feT6I/VYi3mOMMjzI/AAAAAAAAAqI/bYoi7pFAeoI/s640/blogger-image-1773917407.jpg"></a></div><br></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com5tag:blogger.com,1999:blog-579417770597714459.post-58286153950932319712015-04-26T19:30:00.001-04:002015-04-26T20:38:51.204-04:00Spring Awakening<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">It's been about 6 weeks since we found out that Ezra responded to vaccination and with that news, everything changed. It has been a whirlwind of a month with a lot of big changes both medically and socially. We have been slowly testing the waters of "normal" life one little toe at a time, which has been wonderful and scary at the same time. <br><br>On the medical front, Ezra's counts are great and he is now off steroids for the first time in over a year and a half! Even better - he is now off all medications, aside from vitamins and supplements for the first time since he was 4 months old! This includes the prophylactic antibiotics to prevent the type of pneumonia that attacks Hyper IgM patients, which Ezra has been on in one form or another also since he was 4 months old. Again, wonderful and scary at the same time. <br><br>We are also continuing to vaccinate him, much to Ezra's chagrin. No one likes shots, but we are finding that Ezra is having an especially difficult time, likely from all that he has been through in the past. His doctor wants to give him a little break because she thinks he's getting too traumatized. As much as we want him to be as protected as possible as quickly as possible, she is correct and we will take the vaccination process slowly. Or maybe it's Ezra's demands to his doctor that she "figure out how to put the vaccine through his port." He isn't buying her reasons for why science takes a long time ;)<br><br>On the social front, Ezra is making great strides. He has been enjoying having play dates, learning what it means to play with another child, and reuniting with family and friends. We've also been having a blast going to some public places that were previously off limits. Even the most simple outing is a treat to us. <br><br>We are still taking precautions and not knowingly exposing Ezra to anyone who is sick. We clean his hands regularly while out and Ezra knows not to touch his face when his hands aren't clean. Ezra is still under a fever alert where we must take him to Sloan at any hour of the day or night if he shows signs of a fever for tests and IV antibiotics, which will be traumatic for all of us. So we are proceeding with caution. <br><br>Our big project is to see if we can get Ezra into kindergarten on a limited basis before the school year is over. One of Ezra's home schooling teachers is a kindergarten teacher with a class at one of schools in our district. The plan, if all goes well, is for Ezra to attend her afternoon kindergarten class for a short amount of time a few days a week and see how he does. We have started bringing him to her classroom after school without any other children a couple of days a week for his home schooling instruction, and he is loving being in the classroom (and yes, he had to wear a tie for his first day!). Being with other children is going to pose more challenges, but we are working with a fantastic team and are confident that we will figure it out together. <br><br>This new way of life still feels surreal. After 6 years of living in differing levels of isolation, our days now feel so full. Ezra's strength and energy have also been improving. Amazing what the right motivation can do. Whenever we see statistics about survival following transplant, and in particular when there are auto-antibody complications like Ezra faced, we feel so blessed and lucky. There was never anything but uncertainty that Ezra would survive. Now we spend each day grateful that he is here; he is strong; and he is healthy. A spring awakening like no other. </span><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-SstWpcckDL4/VT10-cRHITI/AAAAAAAAAps/rE7HC6zLnnw/s640/blogger-image-688136114.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-SstWpcckDL4/VT10-cRHITI/AAAAAAAAAps/rE7HC6zLnnw/s640/blogger-image-688136114.jpg"></a></div><br><br><br></span><span style="font-family: UICTFontTextStyleBody;"></span><br style="font-family: UICTFontTextStyleBody;"></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com5tag:blogger.com,1999:blog-579417770597714459.post-20621685850620533302015-03-13T14:10:00.001-04:002015-03-17T10:14:20.550-04:00THE CURE<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The news we have been waiting for, praying for, and fighting for has arrived. Ezra has responded to the vaccine. His immune system did what it was incapable of doing prior to transplant - he made antibodies to protect himself from infection. And it is a real, good response. For once, we have test results that aren't "so-so" or "unclear." He made a beautiful antibody response, and there's no doubt about it. This is the cure.<br /><br />Ezra's immune system is in a good place. What is left to be seen is the terrifying part - how he will do in reality, rather than in the Petri dish, when faced with an infection? The other issue is that as long as he has a port in place, he is on a fever "alert" where we must bring him into Sloan at any hour if he develops even a low grade fever. Anyone who has a port or a line is at risk of a very serious blood infection. All fevers must be taken seriously and IV antibiotics administered immediately. Initially, he will also need to come to Sloan for any illness to check his counts, etc. If he does well, with time, those visits should be relaxed.<br /><br />The other remaining issue is that he is still on a low dose of steroids that need to be weaned and we need to make sure he has no auto-antibody flare up as he is weaned. So for now, we continue with regular clinic visits.<br /><br />At the end of the visit as we were getting ready to leave, Ezra's doctor told him that he doesn't need to wear his mask anymore. At first he just shrugged his shoulders in a "whatever" way. But when he went to step into the hallway, a huge smile spread across his face, and then he had to tell everyone we passed that he wasn't wearing a mask.<br /><br />We have to step back and marvel with appreciation that a cure for Ezra's disease was even possible. There have been no protocols and very little experience to guide Ezra's doctors on the best approach for transplanting him - a situation made more complex by his first failed transplant, the degree of mismatch of his donor and then the rare complications he suffered. But his doctors did it. Some of you may recall that Ezra's primary transplant doctor suddenly and sadly passed away shortly before Ezra's second transplant. The entire transplant team embraced Ezra, but one attending took a particular interest in Ezra and became his primary transplant doctor. We are forever grateful to Dr. Susan Prockop who takes devotion to her patients to another level and has been a source of brilliance and guidance through this journey.<br /><br />We are bursting with gratitude for Ezra's donor - his "special lady," as Ezra calls her. At the one year post-transplant mark, we were permitted to exchange contact information with Ezra's donor. We eagerly filled out the paperwork, but the donor registry has not heard back from the donor. We are not given any further information and do not know if she has changed her contact information or if she just does not want to respond. We have sent her anonymous letters and have told her that whenever she is ready to be in touch, we will welcome her with open arms. It will always feel like there is a hole in our lives without the special lady who we searched for so desperately and who so unselfishly saved our son's life. We will think of her always and hope she knows what a hero she is to a little boy and his family.<br /><br />It has taken a village to cure our son. From his donor, to the blood and platelet donors who flooded the MSK donor room, to the delicious meals that appeared on a daily basis, to the gifts for Ezra, to the messages, emails, and calls, we have been overwhelmed by the support and love. This journey would have been impossible without all of you.<br /><br />Now starts what we are considering to be Phase Two of Ezra's recovery: socialization and independence. Ezra has had minimal contact with other children and has never been separated from a caregiver. We are going to go very slowly and carefully with this phase as we did with the medical phase.<br /><br />This past Sunday we celebrated Ezra's 6th birthday. It was a day of great joy, especially when compared to his 5th birthday, which was spent in the hospital and was one of the worst days of our lives. For the first time, the fear that has overshadowed each of his birthdays has quieted, and we dare to look ahead to a long lifetime of birthdays.<br /><br />This journey is not quite over. Rather, we are beginning a new, wonderful phase. We will continue to post updates of hopefully more milestones reached and surpassed.<br /><br />In the beginning of our journey to cure Ezra, one of the world's experts on Hyper IgM, in recommending that Ezra be transplanted, said to us "do you want him to live with a sword over his head?" This question has always haunted us through this journey, and in particular, has echoed through our heads as we struggled with gut wrenching medical decisions. That ever-present sword has just been thrown to the side. Now all we see above Ezra's head is a sparkling world of potential, adventure, laughter and love.</span><br />
<div>
<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br /></span></div>
<div>
<a href="https://lh5.googleusercontent.com/-EfSZqvankxE/VQMoKDZt6bI/AAAAAAAAApQ/P9DxNJFqLV0/s640/blogger-image--198681558.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-EfSZqvankxE/VQMoKDZt6bI/AAAAAAAAApQ/P9DxNJFqLV0/s640/blogger-image--198681558.jpg" /></a><a href="http://2.bp.blogspot.com/-9AGpixYvdu8/UeRiA8Y-8GI/AAAAAAAAARQ/PDPIMRsVdEU/s1600/DSC_6088.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://2.bp.blogspot.com/-9AGpixYvdu8/UeRiA8Y-8GI/AAAAAAAAARQ/PDPIMRsVdEU/s1600/DSC_6088.JPG" height="213" width="320" /></a><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"></span><br />
<div class="separator" style="clear: both;">
<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"></span></div>
<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br /></span></div>
Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com23tag:blogger.com,1999:blog-579417770597714459.post-37454189575957202982015-03-01T18:59:00.001-05:002015-03-01T20:10:49.889-05:00One Part of the Cure<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">We happily received some good news this week. The specific type of Hyper IgM Syndrome that Ezra has is called X-linked CD40 Ligand Deficiency. CD40 Ligand is a little protein found on the surface of T cells. It is responsible for communicating with B cells and instructing the B cells to make antibodies, as well as signaling other cells of the immune system to take action when an infection is detected. Ezra had a "complete absence" of CD40 Ligand on his T cells when he was diagnosed. Some patients with CD40 Ligand Deficiency have CD40 Ligand present on their cells, but it doesn't function properly. Some doctors believe that the absence of CD40 Ligand as in Ezra's case is a more "severe" form of the disease. A little protein that causes a big mess of you don't have it. <br><br>We tested Ezra's CD40 Ligand for the first time since his second transplant. We have the results from the first part of the test, which looks at whether the T cells have CD40 Ligand and whether it increases when stimulated. Ezra now has CD40 Ligand on his T cells! The numbers are below normal, but not too bad. His doctor thinks his immune system needs more time to fully mature, but she does think that the current level is protective - provided the CD40 Ligand functions properly. <br><br>The second part of the test, which measures the function of the CD40 Ligand, is not back yet. We hope to have the results in the next few weeks. The function may not fully be there because unfortunately, Ezra's IgG decreased again last month and is pretty low. It isn't so helpful to have CD40 Ligand and for it to not function. But first things first - you have to have it for it to function. Ezra now has CD40 Ligand and that's a beautiful thing. <br><br>This good news came on the one year anniversary of when Ezra developed the very harmful auto-antibodies, the ramifications of which he is still dealing. Looking at the lab report brought us back to September 2009, when Ezra's usually cheerful pediatrician suddenly was not so cheerful as she handed me the results of this same test. I comprehended only a few words from the cover letter from the lab - a diagnosis of Hyper IgM and a referral for transplant. The rest blurred together in a fog of devastation. Then I looked at my smiling baby boy, and that was the moment when I knew that Ezra would no longer see our tears or anguish. He would know as much joy as we could provide, and we would carry him through the unavoidable suffering with laughter and love. <br><br>One part of the cure is checked off the list. We have no idea if he will pass the function test, and it still remains to be seen if he can make antibodies in response to a vaccine, which needs to happen to know he is safe. Next week, Ezra unbelievably turns 6 years old, which also means we've been fighting Hyper IgM for 5 years and 8 months. At this point, we are just happy to know that there is some forward movement and that Ezra's new immune system is still a work in progress. </span><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-DoVCbOeGdc8/VPOVzw4ZrcI/AAAAAAAAAok/S3RufRHrH6I/s640/blogger-image-836409151.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-DoVCbOeGdc8/VPOVzw4ZrcI/AAAAAAAAAok/S3RufRHrH6I/s640/blogger-image-836409151.jpg"></a></div><br></span><span style="font-family: UICTFontTextStyleBody;"></span><br style="font-family: UICTFontTextStyleBody;"></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com2tag:blogger.com,1999:blog-579417770597714459.post-78451872624137791492015-02-02T15:05:00.001-05:002015-02-02T18:41:39.319-05:00Third Time's A Charm?<div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Ezra received another vaccine shot on Friday. Now that he is on a lower dose of the immune suppressant, his doctor thought it was a good time to try and vaccinate him again. They will probably test for an antibody response at the four week mark, but his doctor said it is more likely to see a response at the eight week mark. IF we are to see a response. <br><br>Ezra handled the shot so well - much better than last time when we had no advance notice. It is really incredible to watch him draw on all the strategies and methods he has learned over the years of medical trauma to pull himself through to a place of calm. We are very proud of him. <br><br>Unfortunately, Ezra's IgG level (IgG level is basically the amount antibodies circulating in your blood at any time ready to fight off infection and the type of immunoglobulin that Ezra could not make prior to transplant) has decreased again. It has not dropped by a huge amount, but it also is not increasing. His doctor thinks his body is making some IgG, but not enough. Once again, what is most important for everyone to see is if he can respond to a vaccine. They are not going to give IVIG at this point, unless he gets sick or his IgG level drops more severely. <br><br>With the lower IgG level, we are not sure that Ezra's going to be able to respond to the vaccine. We remain ever hopeful. They also took a slew of labs to check on Ezra's immune system and to make sure nothing is getting out of control on the autoantibody front now that he is on lower doses of steroids and the immune suppressant. More labs will be sent at our next clinic visit as well. It will be a nerve racking month for us as we wait for all these results to come in. <br><br>While the country is in the midst of a measles outbreak and the ensuing debate over vaccination, it feels somewhat ironic to sit here praying for Ezra's immune system to have the ability to kick into action and respond to this vaccine. The people who <i>choose </i>not to vaccinate their children do not even realize how lucky they are to have a <i>choice</i> whether to vaccinate (and it should not be a choice). Anyone who has been following Ezra's journey knows what we would give for Ezra to be capable of making antibodies. It takes just a few minutes of learning about the immune system and these devastating diseases to see that vaccination is a gift. <br><br>We have no choice. All we can do is to hope and pray that someday soon Ezra's new immune system starts to properly function. In the meantime, we are forced to rely on others doing their part at keeping deadly disease out of our communities. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Unfortunately, we fear that too many do not care about the plight of their immune compromised and medically fragile neighbors, as well as all the children too young to be fully vaccinated. We shouldn't have to fear that others will make a "personal" choice that may threaten our son's life. Too many choose self over the health of the community, and not just in the realm of vaccination. We are left cringing at every report of an additional case of measles. An unnecessary fear to add to our list of fears. <br><br>Please join us in hoping and praying that the third try does the trick and Ezra's immune system properly responds. And that we can keep him safe while we continue to wait. We will keep you all posted. </span><br></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-J_nN7i8eAgA/VM_LIHg2i_I/AAAAAAAAAoM/eKzP7WEM3AU/s640/blogger-image-722559204.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-J_nN7i8eAgA/VM_LIHg2i_I/AAAAAAAAAoM/eKzP7WEM3AU/s640/blogger-image-722559204.jpg"></a></div><br></span></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com0tag:blogger.com,1999:blog-579417770597714459.post-7158033938360901722015-01-04T21:11:00.001-05:002015-01-04T21:33:35.403-05:00Patience<div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The past two weeks have been great fun for Ezra, and he has enjoyed the holidays and the new year celebrations. We don't have the best news to report on the medical front, unfortunately. We got the results back on the vaccine antibodies. Unfortunately, Ezra has not responded to the vaccines. It does look like he has responded to polio, one of several vaccines he received, but the doctor wants to see him mount more of an antibody response before we breathe any sigh of relief or make any changes to his treatment/situation. There is no real explanation for why he responded to one vaccine and not the others. The plan is to give him another shot in a month and see if he responds then. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">We are of course disappointed and worried that he did not respond to the vaccines. Ezra's doctor, while also disappointed, is confident that with time and lower doses of the immune suppressing drugs, he will be able to have a proper antibody response. Bottom line is that we continue to need to be patient. We've been patiently waiting for a cure for the past five years, and we can certainly stay the course. We always say that as long as things don't go in the wrong direction, we can be as patient as can be. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">In the meantime, he needs to get onto a lower dose of the immune suppressant to have proper immune system function. The dose has been going down by very small increments each week. So far, so good. His counts are not showing any signs of autoantibodies. The only other lingering issue at the moment is his iron levels, which are dipping again. At least that issue is easily remedied with IV iron, as long as we keep a close eye on the levels. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">We are prepared to hunker down for the germy winter. Our number one goal, as always, is to keep Ezra safe, healthy and happy, and hope that his immune system gets its act together soon. If we don't blog as often, please don't worry - it means that all is status quo, at least for the most part. Here's to hoping for some quiet times as we start 2015!</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">P.S. For those of you who do not follow Ezra's Facebook page, here is the link to an article I wrote about Ezra and the Gift of Life Bone Marrow Foundation for the New York Times parenting blog: http://nyti.ms/1ztEpys</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-wp0Ia4X3dV0/VKnyyACd3WI/AAAAAAAAAn4/cTCJW51CIcg/s640/blogger-image--1163447781.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-wp0Ia4X3dV0/VKnyyACd3WI/AAAAAAAAAn4/cTCJW51CIcg/s640/blogger-image--1163447781.jpg"></a></div><br></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com0tag:blogger.com,1999:blog-579417770597714459.post-22899867465565282922014-12-21T19:34:00.001-05:002014-12-21T20:49:04.758-05:00T It Up!<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Good news on the T cell front - Ezra's T cells have reached the normal range! We also received the results of the general function T cell test and his T cells have surpassed the "two-thirds of normal" immunological marker. They aren't functioning normally yet, but they are making slow and steady progress towards a safer place. Looking back to September, Ezra still had very few T cells, and it felt like we would never see the day when he would have normal T cell numbers. Now, three months later, he made it!<br><br>Although we have reached this milestone, nothing changes as far as his treatment and isolation. In fact, Ezra had normal levels for these tests prior to transplant, but this is an important milestone for a post-T cell depleted transplant patient. We still need to see if he can make antibodies in response to the vaccine. This will be the true test of whether he is cured. Another round of tests to see if he responded to the vaccine have been sent to the lab, and we should have the results in the next couple of weeks. Please send some positive antibody thoughts Ezra's way!<br><br>We have also continued the slow wean of the immune suppressant. Getting off the immune suppressant and steroids is another challenge that Ezra needs to surmount in order to have a properly functioning immune system. His doctors are keeping a close eye on his counts to make sure there is no autoantibody flare up while we wean. So far, so good. <br><br>We have been fully enjoying the light of Hanukkah this year. It isn't just the giant menorah that is once again on our front lawn. It is the love that has been bestowed upon Ezra. He has received gifts from many people who we know wish him good health most of all, but want him to also enjoy himself in the meantime. He is having a blast! <br><br>We also had the opportunity to celebrate the holidays at Menorial Sloan-Kettering's annual pediatric holiday party. We spent time with Ezra's wonderful primary nurses from his time in-patient and celebrated with the doctors, nurses and staff who have gotten us through the most difficult times of our lives. It is also Ezra's favorite time of the year at the hospital because hidden away in the basement level is a magical hallway transformed into a winter wonderland by the operations staff, including a model train display that always captivates Ezra. We've become experts at finding light in even the darkest of places. Happy Holidays to all!</span><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-6ecDkQZ4HwY/VJdnJnl0mNI/AAAAAAAAAno/zfIfoy4S75k/s640/blogger-image--1468205897.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-6ecDkQZ4HwY/VJdnJnl0mNI/AAAAAAAAAno/zfIfoy4S75k/s640/blogger-image--1468205897.jpg"></a></div><br></span></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com5tag:blogger.com,1999:blog-579417770597714459.post-8665628388461059032014-12-07T17:26:00.001-05:002014-12-07T19:00:45.756-05:00Living In Limbo, But It's Ok<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">We had a chance to speak with Ezra's primary transplant doctor this week at clinic about the state of Ezra's immune system. As we wrote in the last blog post, we have been feeling very unsettled by the fact that the part of Ezra's immune system that isn't working right now (the ability to make antibodies) is exactly the main part that wasn't working prior to transplant. We got back the results on the vaccine antibodies test from a couple of weeks ago. He may have responded to the polio part of the vaccine, but for complicated reasons, the results are not clear. He definitely did not yet respond to the other viruses/bacteria in the vaccine. Ezra's doctor believes it is too soon. They will check again in two weeks. <br><br>If he still has not responded, Ezra's doctor assured us that she does not think that it is because of Hyper IgM Syndrome. She said that the communication between the T cells and B cells that is needed for B cells to make antibodies (and what Ezra's immune system was not able to do prior to transplant) is the last function to come back post-transplant, especially in T cell depleted transplants. She is optimistic that if we can get him off the immune suppressant, then with time the ability to make antibodies will come. His IgG also stayed the same for the past two weeks. It would be reassuring to all if we can see an increase in IgG, but we will certainly take stability - and it buys us another two weeks without IVIG. <br><br>Ezra's doctor also explained that Ezra is in a safer place in terms of handling an infection now that he has more T cells and their function is improving. They are most concerned when there are low numbers of T cells and they aren't functioning. We obviously don't want to test this out, but it was very good to hear that he is making progress. Another T cell check is cooking in the lab and we should have the results in a couple of weeks. <br><br>Thankfully, we have started weaning the immune suppressant. The wean will be slow over several months. He is still on a very low dose of steroids and we will hold him on this dose for now while we wean the immune suppressant. We are praying that he doesn't have an auto antibody flare up while we are weaning. <br><br>Despite all the uncertainty, we are starting to feel like there are slivers of hope for the future. For the first time, I bought a shirt for Ezra during the holiday sales to put away for next year. I had never before allowed myself to buy something in advance for him. It always seemed presumptuous to think there would be a next year. Throughout this journey we've learned the hard way to never think ahead and to take each day at a time. We are starting to allow ourselves little glimmers of a healthy future, and we so hope we aren't proved wrong. </span><br style="font-family: UICTFontTextStyleBody;"><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-53CGmPVRh8k/VITVO3mDK8I/AAAAAAAAAnY/dVeHXkhp07M/s640/blogger-image--709880965.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-53CGmPVRh8k/VITVO3mDK8I/AAAAAAAAAnY/dVeHXkhp07M/s640/blogger-image--709880965.jpg"></a></div><br></span></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com1tag:blogger.com,1999:blog-579417770597714459.post-25390173265628313192014-11-23T17:06:00.001-05:002014-11-23T18:59:36.876-05:00Trying To Be "Cautiously Optimistic"<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The last few weeks have been spent trying to assess the state of Ezra's immune system, but after all the testing, we are still left in a state of uncertainty. We always try to focus on the positive and there is much to be grateful for at this point. Ezra is now on a very low dose of steroids and there has been no sign of the auto-antibodies. We have not yet started to wean the immune suppressant. We are hoping that will happen at some point next month. <br><br>With the decrease in steroids, Ezra's new T cells have started functioning. To assess T cell function, Ezra's doctors run a test to see how the T cells respond to a "general" stimulant (as opposed to a virus or bacteria). Studies have shown that patients can fight off certain infections that are a concern following a T cell depleted transplant with two-thirds of normal function. Ezra's T cells are inching closer to that "two-thirds of normal" milestone. Ezra's T cells performed normally on this test prior to transplant. So not so exciting in terms of a cure, but a very good indicator in terms of T cell recovery post-T cell depleted transplant. <br><br>They also performed another T cell function test relating to the vaccine Ezra received. His T cells were able to respond to one of the strains of bacteria in the vaccine. Ezra's T cells were NOT able to respond to this same bacteria after we attempted to vaccinate him prior to transplant. This is at least some change in his immune function, which we were very happy to see. Based on this result, Ezra's doctor said that she is "cautiously optimistic."<br><br>BUT (there's always a "but"), Ezra's IgG levels have dropped. Between his failure to respond to the first round of the vaccine and dropping IgG levels, his immune system is acting just like it did prior to transplant. The doctor decided to test to see if he has made any antibodies in response to the vaccine even though it is likely too soon from the second shot to see a response. If he shows some response at this point, it will be a miracle. Most likely, it is too soon. Or he isn't going to respond at all because of the immune suppressant and his newly rebuilding immune system. We can't help but fear that this part of his system may not come back at all. As much as his doctors believe it will, after all we have been through, we will believe it if and when we see it. <br><br>The tricky issue is whether he needs to get a round of IVIG. We are all concerned about protecting him during the germy season. The problem with giving him IVIG right now is that we lose the opportunity to see if he has responded to the second round of the vaccine because it will be impossible to tell if he responded when he is getting the antibodies from IVIG. The other issue with giving him IVIG is that it will be another 4-6 months before we will know whether he is able to make IgG and antibodies on his own. That means another 6 months at the least of isolation and uncertainty. The older Ezra gets, the more concerned we are about his lack of contact with other children, and another 6 months of isolation is definitely not what we want. We will wait for the vaccine results to come back and go from there. <br><br>As we enter this week of thanks, we are very grateful for how far Ezra has come. Looking back to last Thanksgiving, Ezra had recently developed GVHD, was on high dose steroids, and we were very frightened of the course the GVHD might take. He has overcome many obstacles, and we know more challenges lie ahead. Right now, he is feeling well and is a very happy little guy. And for that, we are more than grateful. <br></span><span style="font-family: UICTFontTextStyleBody;"></span><br style="font-family: UICTFontTextStyleBody;"><div><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-8maGWr1Zm1g/VHJaUGzzbaI/AAAAAAAAAnI/JSGW3FamoL0/s640/blogger-image--1124465661.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-8maGWr1Zm1g/VHJaUGzzbaI/AAAAAAAAAnI/JSGW3FamoL0/s640/blogger-image--1124465661.jpg"></a></div><br></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com1tag:blogger.com,1999:blog-579417770597714459.post-80883584848206112942014-11-02T19:19:00.001-05:002014-11-02T20:07:25.639-05:00Not There Yet<span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">First the good news: Ezra is still 100% donor on all cell lines. This means that those new T cells that appeared a few weeks ago are donor T cells, which is a huge relief. Without donor T cells, we would be nowhere. </span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">Now, the bad news: Ezra made no antibody response to the vaccine. In addition, he now has lower numbers of the type of B cell responsible for making IgG/antibodies than he did last month. His IgG has also continued to drop, albeit slowly. These results are confusing because he now has a lot more T cells and is on a lower doses of steroids, which should have meant improved immune function. </span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">There are several possible explanations. When he got the vaccine in the beginning of September, we knew it was a long shot that he would respond because he had very few T cells and was still on steroids and an immune suppressant (as he still is today). Although he now has more T cells, they are new and need time to start functioning properly. He also had plenty of antibodies left in his system from his last round of high dose IVIG in June, which can prevent or mask an immune response. In addition, he only received one round of the vaccine and it can take more than one shot to build immunity (there's a reason kids get so many rounds of the same vaccine). </span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">The doctor we saw on Friday decided to give Ezra another round of the vaccine. We're not sure it's going to work this time around either. Although he is on a low dose of steroids, we have not yet started to wean his immune suppressant, and that drug can prevent an antibody response. They are also going to run another test on Ezra's T cells later this week that may tell us more about whether the T cells are functioning properly. </span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">We can't help but feel uneasy about all this. Although Ezra is 100% donor, functionally his immune system right now is looking very similar to how it looked before transplant. We know that some patients, particularly immune deficient patients, do not obtain full immune function after transplant. We are hoping this is not Ezra's fate. Most likely, it is too early to draw conclusions, and we just need to do what we have learned we must always do - have patience with this terribly long journey. </span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">Ezra had been looking forward to Halloween at the hospital, and he had good reason to look forward to it because the pediatric hospital transforms into a magical place for Halloween. Every area has a different theme; the walls are covered in scenery; and everyone from the doctors to the maintenance staff wear costumes. Sadly, Ezra's day was ruined by the surprise shot. While getting a vaccine is a "normal" kid problem, Ezra has been through too much trauma and pain, and he needs to be prepared in advance for any challenges. That wasn't possible on Friday, and he was very upset. Our poor little Stooge wasn't able to nyuk it up as much as we all expected. </span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">Thankfully, on Thursday, Ezra's wonderful teachers and therapists came over to give him a Halloween celebration, complete with trick or treating throughout the house. We are very blessed to have such a passionate team working with Ezra who are constantly thinking of ways to help him and bring more life to his days. </span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">For those of you who don't follow Ezra's Facebook page, last Sunday's Walk for Life was incredible. We raised over $28,000, which will all go to adding more donors to the registry! Ezra was able to attend and cheer on Team Ezra. He was thrilled to have been there. It was an uplifting and inspiring day for us all. These are the moments of good that carry us through the uncertainty that continues to surround us. </span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><div><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><br></span></div><div><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-j25AxC6wAck/VFbPcUvSJdI/AAAAAAAAAm4/PBxY3dLoT2M/s640/blogger-image-2042991848.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-j25AxC6wAck/VFbPcUvSJdI/AAAAAAAAAm4/PBxY3dLoT2M/s640/blogger-image-2042991848.jpg"></a></div><br></span></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com1tag:blogger.com,1999:blog-579417770597714459.post-67167265615347946902014-10-19T19:26:00.001-04:002014-10-19T20:47:31.269-04:00This Is Either Good News or Not So Good News<span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">We received some confusing medical results this week. Ezra's T cells shot up - not to normal, but well past the initial level that the doctors were waiting for him to reach where certain changes are made on his medical care. This is a surprising result given that he is still on steroids, a full dose of immune suppressant, and he has barely had any T cells for a long time. We would have been jumping for joy over this news, except it came with a confusing result - his IgG is down. With more T cells, his IgG should have increased. So, does this mean the new T cells aren't functioning properly? Is it because of the steroids and immune suppressant? Or are the T cells too new and not yet fully communicating with his B cells in order to make IgG?</span><br style="font-family: UICTFontTextStyleBody;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">Or, scariest of all, could the T cells possibly be his old, defective T cells and not healthy donor T cells? Our minds immediately went to that thought. We have not checked his chimerism for three months because of all the other issues going on and the effort to conserve blood. This is the longest we have gone without checking chimerism. We can't help but worry that this burst of T cells is made up of old, defective Ezra T cells. Ezra's doctor does not think that this is what is going on, but anytime we have been told that something about Ezra is medically "surprising," it has always been a bad thing. We are trying to be positive and focus on the most likely explanation is that the lack of IgG is from the immune suppressing drugs and that these are very new T cells that need more time to properly communicate with his B cells.</span><br style="font-family: UICTFontTextStyleBody;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">The plan is to send out a chimerism test and a slew of other tests later this week to try and get a better sense of the state of his immune system, assuming his hemoglobin can handle the blood work. We know that most likely, there will be no black and white answer - the situation will be filled with gray. The most likely outcome will be that we need more time for everything to sort out. That's just how this journey seems to go. It will be an anxiety-filled couple of weeks until we have his test results back - especially the chimerism test. </span><br style="font-family: UICTFontTextStyleBody;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">Thankfully, we have next Sunday's Walk for Life to distract us from our worries! We are so grateful to everyone who has generously donated and to all who are joining us on Sunday. You can still help us celebrate life and help add donors to the registry by donating at http://support.giftoflife.org/site/TR/WalkForLife/General?px=1293644&pg=personal&fr_id=1150</span><br style="font-family: UICTFontTextStyleBody;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">If you plan on attending the event, please register in advance - you will save on registration fees! It will be a fun and inspiring day!</span><br style="font-family: UICTFontTextStyleBody;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">We hope that by our next update we have at least some clarity as to the state of Ezra's immune system. It will be a miracle if the appearance of these T cells ends up being good news. Even if it ends up that things are still mostly covered in gray, at this point any step toward the light will feel like a leap to us. </span><br style="font-family: UICTFontTextStyleBody;"><div><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><br></span></div><div><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-N31Ctv-V_go/VERJPsw3lHI/AAAAAAAAAmo/j88nJk_vRao/s640/blogger-image-102049360.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-N31Ctv-V_go/VERJPsw3lHI/AAAAAAAAAmo/j88nJk_vRao/s640/blogger-image-102049360.jpg"></a></div><br></span></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com1tag:blogger.com,1999:blog-579417770597714459.post-66130693010252915982014-10-12T19:22:00.001-04:002014-10-12T20:07:35.860-04:00Iron Boy!<span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">After two rounds of IV iron, Ezra's hemoglobin is back in the normal range. His iron stores were severely depleted - almost gone. We will continue to monitor his iron storage levels to determine how often he needs the IV iron. Unfortunately, regularly taking significant amounts of blood from Ezra to monitor him for infection and all the other issues we have been dealing with is a necessary evil. Going forward, it will be a balancing act between getting these tests done and making sure he doesn't become anemic.</span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">After seeing his counts this week, Ezra's doctor feels confident that the drop in hemoglobin was not from a flare-up of the auto-antibodies, and it was the lack of iron. This is a relief. She allowed us to get back to the slow wean of the steroids, which is great because our number one goal right now is to get Ezra off the steroids. </span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">We are waiting another two weeks before checking to see if Ezra has been able to make antibodies to the vaccine, assuming his hemoglobin is high enough to handle the blood work. Another T cell check is currently at the lab. It would be a huge relief to finally see some T cell growth this month. Until he gets an adequate amount of T cells, Ezra remains at risk of life-threatening infections, and the longer it takes, the scarier it is. A critical amount of functioning T cells is his ticket out of isolation and into the world. Please T cells, grow, grow, grow!</span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">The IV iron has helped improve Ezra's energy, although he continues to struggle with strength and endurance issues following these 2 and a half years of brutal transplant-related treatments. Last night at bedtime, Ezra proclaimed "I am VERY healthy!" We're hoping that he has the inside scoop and maybe he knows that his T cells are growing. At the least, we are happy that he feels "very healthy." Our hope is that he should only know what it feels like to be healthy from this point forward. That would truly be a dream come true. </span><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-tukuVwKtXiY/VDsNHpJE2EI/AAAAAAAAAmY/Xyvd5Pnct78/s640/blogger-image--1770179805.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-tukuVwKtXiY/VDsNHpJE2EI/AAAAAAAAAmY/Xyvd5Pnct78/s640/blogger-image--1770179805.jpg"></a></div><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><div><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><br></span></div><div><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><br></span></div></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com2tag:blogger.com,1999:blog-579417770597714459.post-58876845566232930172014-09-28T19:51:00.001-04:002014-09-28T21:35:17.554-04:00Have the Happy, Need the Healthy<div style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">It seems that always when we reach a period of calm and we start to see a glimpse of light, it disappears before we can even breathe a sigh of relief. Over the past two weeks, Ezra's hemoglobin has been dropping. We spent the last several days in a panic because the cause of the decrease was not clear. We were very fearful that it was the auto-antibodies ramping up again. Ezra's doctor was already talking about increasing the steroids again, and we were in a state of despair. We just received word tonight from his doctor that it appears that Ezra is once again iron deficient. He has had a lot of blood drawn over the past month for various reasons, and it may be the case that the increase in blood draws put him over the edge. <br><br>We never thought we would be relieved that Ezra is iron deficient, but compared to the other options, we are relieved. We don't have a complete picture of what is going on because Ezra's doctor wanted to try reducing the amount of blood taken this past week and did not want to add any additional tests. We are praying the culprit is "just" the iron deficiency and not the auto-antibodies. He will start IV iron again this week. It will likely take some time to rebuild the stores as it did last time, but hopefully his counts will improve quickly. <br><br>Ezra's doctor wants to wait a month after the vaccine to test for antibodies to give him more time to respond, although now with this latest issue, we don't know when we will test. We also got back results on testing performed on a certain aspect of T cell function. The results show that the small number of T cells that Ezra has are functioning fairly well. Not normal function, but improving. This is great, assuming he can avoid any increase in steroids from here on out. <br><br>Once again, we head into a new year hoping that it will finally be the year of the cure. Last year on Rosh Hashanah, we found out that Ezra engrafted and was 100% donor. We had many high hopes for this past year. We remain grateful for what we have and hopeful that this coming year will bring health for our sweet boy. Wishing all a happy and healthy new year. <br><br>P.S. If you are ordering a Team Ezra shirt and want it before Oct. 26, please order this week! <a href="http://www.goodthreads.com/SharedDesign/TeamEzra3.design">http://www.goodthreads.com/SharedDesign/TeamEzra3.design</a></div><div style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-HSjw9wFlyGg/VCifGJXSG9I/AAAAAAAAAmI/Kx4uQZsDWKI/s640/blogger-image-335621914.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-HSjw9wFlyGg/VCifGJXSG9I/AAAAAAAAAmI/Kx4uQZsDWKI/s640/blogger-image-335621914.jpg"></a></div><br></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com2tag:blogger.com,1999:blog-579417770597714459.post-40576338800257614942014-09-17T19:16:00.001-04:002014-09-22T10:23:53.176-04:00Ordering Team Ezra ShirtsA couple of questions have come up about ordering Team Ezra shirts. You will receive a standard Gift of Life shirt with your registration, but if you want to show your Team Ezra pride, you can order at <a href="http://www.goodthreads.com/SharedDesign/TeamEzra3.design">http://www.goodthreads.com/SharedDesign/TeamEzra3.design</a>. The store can only be viewed on a computer. The Team Ezra design is only available in Men's, Women's, Youth and Toddler short sleeves styles. <div><br></div><div>If you plan on wearing the shirt to the Walk for Life, please order in PURPLE. If you are not attending the event, feel free to order in any color. Purple is Ezra's favorite color and we know that he will be thrilled to see everyone in purple!</div><div><br></div><div>Please do not make any changes to the file on Step Two of ordering. </div><div><br></div><div>When you add the shirt to the cart, it will ask you to input the sizes you are ordering. </div><div><br></div><div>Please order at least 3 weeks prior to Oct. 26 to ensure that you receive your shirt in time, so order soon!</div><div><br></div><div>$5 of every shirt goes to Team Ezra's fundraising for Gift of Life!</div><div><br></div><div>Thank you all for your support and enthusiasm for Team Ezra! </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-JDlGSsncsbo/VBoZS7Za09I/AAAAAAAAAl4/FptqD6dQZ4k/s640/blogger-image--700196415.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-JDlGSsncsbo/VBoZS7Za09I/AAAAAAAAAl4/FptqD6dQZ4k/s640/blogger-image--700196415.jpg"></a></div><br></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com0tag:blogger.com,1999:blog-579417770597714459.post-22343493808263175442014-09-14T19:20:00.001-04:002014-09-14T20:46:46.850-04:00Come On Antibodies!<div style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><div class="separator" style="clear: both;">Ezra received the vaccine at clinic on Friday. They took baseline levels beforehand so that the doctors will be able to tell if he responds to the vaccine. We are waiting either two or three weeks before checking for antibodies. The doctors will also be running another test to check if his T cells respond to the vaccine, which will give us more information. They have told us that if he does not respond, it means that his immune system is just not ready. And if he does respond, then celebrations all around. So now we wait and think positive antibody thoughts. </div><br>We received the results of the latest T cell check. The amount of T cells was almost exactly the same as last month. An indicator of new T cell growth that has been zero for many months actually registered on the test this month at a very small amount, which gives us a sliver of hope that maybe next month will result in some T cell growth. Maybe. <br><br>Ezra's IgG level went up a little this week. It's too soon to know if he will be able to maintain his IgG levels without treatment, but he certainly is not tanking, which is great. <br><br>And because we can never go long without an issue cropping up (life would be so dull), Ezra's toe infection decided to return this weekend. We are trying topical antibiotics and soaks for a day or so to see if we can avoid another round of oral antibiotics. Toes crossed that the least invasive route works!<br><br>Ezra was upset over the shot, but he really used all the coping skills he has learned over the years to deal with his fears. It was amazing to see. Ezra's special child life friend Jessica brought in her two-headed monster to help Ezra get through the day. It was Ezra's idea to practice giving the two-headed monster a shot. Thankfully, Ezra behaved better than his patient. </div><div style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><br></div><div style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">We have heavy hearts this weekend after learning that another Hyper IgM family lost their brave teenage son who was about six months post-transplant. This family already suffered the loss of another son to Hyper IgM. Our prayers are with them. He will be remembered during the Miss America pagent tonight, so tune in and send his family love. As long and as difficult this journey with Ezra has been, we feel very blessed that he has come so far and that he is still fighting hard. <br><br></div><div style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-bOCUwTVpAMc/VBYi1feq57I/AAAAAAAAAlo/HujuZo-22E8/s640/blogger-image--988284447.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-bOCUwTVpAMc/VBYi1feq57I/AAAAAAAAAlo/HujuZo-22E8/s640/blogger-image--988284447.jpg"></a></div><br></div><br></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com1tag:blogger.com,1999:blog-579417770597714459.post-6972033846162987062014-09-07T19:58:00.001-04:002014-09-07T20:11:42.665-04:00An Interesting Plan<span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">Ezra's counts have been stable for the past two weeks and there thankfully has been no sign of the auto-antibodies. The doctors have slowed down the steroid wean now that Ezra is on a lower dose and the chance of a flare-up is higher. Frustrating that we are going so slowly, but it's better than a flare-up. His liver levels have been close to normal over the past couple of weeks for the first time in longer than we can remember. Another T cell check is cooking in the lab. We have zero expectations for his T cell numbers, but are hopeful as always for an increase. </span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">Ezra's doctors have come up with an interesting plan. They want to try and vaccinate him. Typically, they would not try to vaccinate until he reaches a certain number of T cells. The reasons are complicated to explain, but basically, he has now reached a dosing on the steroids where they think he may be capable of having an immune response. The reason for trying now is that it has been almost two and a half months since his last dose of IVIG. They can only check for an antibody response to vaccination when time has passed from the last IVIG as IVIG provides the antibodies that Ezra hasn't been able to make on his own. Ezra's IgG levels have unfortunately been dropping due to the immune suppression and he is at the point when we would normally give him IVIG. Now is an ideal time to hold off on the IVIG to do this vaccine challenge because the germy season has not yet hit. The hope is also that his body will kick in on the IgG production in the meantime now that the levels are low. </span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">Ezra will be given the vaccine at the end of the week, they will get a baseline, and then test for antibodies two weeks later. If he makes an antibody response, it won't necessarily change anything about his current situation because he remains at risk for life-threatening infection until he has more T cells. But it would be HUGE if he is able to make antibodies in response to the vaccine. There are a lot of issues with Hyper IgM, but the primary issue is the inability to make antibodies. If he responds to the vaccine, then we know the few T cells he does have are working and we are on our way to a cure. If he doesn't respond, then his immune system just isn't ready yet. It's worth a shot ;)</span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">As everyone is returning to school, Ezra had the last of his weekly visits to "school" this week. As you can see, he loved every minute of it. We had decided to do the second transplant when we did with the goal of getting Ezra healthy in time to start kindergarten. We've had to come to grips with the reality that kindergarten is not happening - at least, not yet. It's heartbreaking, but at this point, all we want is a healthy Ezra. We are bringing kindergarten to Ezra - tomorrow he starts at home with a wonderful kindergarten teacher, in addition to his beloved teachers and therapists. </span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">Team Ezra is off to a great start! Team Ezra T-shirts are now available! Check out these awesome, Rube Goldberg theme purple (Ezra's favorite color) shirts: </span><a href="http://www.goodthreads.com/SharedDesign/TeamEzra2.design" style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">http://www.goodthreads.com/SharedDesign/TeamEzra2.design</a><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">$5 of every shirt goes to Gift of Life/Team Ezra fundraising for the Walk for Life. Special thanks to Jodie Hein and Ken Bowser for designing these fantastic shirts! Show your Team Ezra pride!</span><div><font face="UICTFontTextStyleBody"><span style="-webkit-text-size-adjust: auto;"><br></span></font></div><div><font face="UICTFontTextStyleBody"><span style="-webkit-text-size-adjust: auto;"><div class="separator" style="clear: both;"><a href="https://lh5.googleusercontent.com/-HKxjN52ilrQ/VAzxLTa_hXI/AAAAAAAAAlY/JZw7Ogda1VU/s640/blogger-image-757537410.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-HKxjN52ilrQ/VAzxLTa_hXI/AAAAAAAAAlY/JZw7Ogda1VU/s640/blogger-image-757537410.jpg"></a></div><br></span></font><div><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><br></span></div><div><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><br></span></div></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com0tag:blogger.com,1999:blog-579417770597714459.post-45615043077150467562014-08-23T09:32:00.001-04:002014-08-24T11:15:03.620-04:00Day +365: One Year - A Celebration of Life<div style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody;">
One year. A year like no other. Looking back on the past year, it feels like it can be divided by all the challenges Ezra has faced. First, round two of high dose chemo, transplant, engraftment and the unspeakable suffering of that time. Next, home and the horrific pain that Ezra suffered, which made him cry all day, as he sat covered in hot packs in a fog from pain medication. Then, just as the pain resolved, came skin GVHD and the round of immune-suppressing steroids used to stop it. Next up, parainfluenza virus and liver issues. And just when he had gotten over the virus and stopped the steroids, the auto-antibodies against his red blood cells, platelets and neutrophils started their vicious attack. Back in the hospital for the month of March with this frightening turn of events, a problem that continues to plague him and drugs that continue to prevent his new immune system from growing.<br />
<br />
We still do not know how we ever mustered the strength to walk our baby back into the hospital and subject him once again to the nightmare of transplant. It was solely our belief that transplant was his best chance at a long, healthy life. And that we owed it to him to try and give him that life.<br />
<br />
While there is much of transplant that we try not to remember, there is too much that we will never forget. The moment of transplant. Eyeing that impossibly small syringe and not believing that small amount of cells could save our son's life and grow into a new immune system. Everything - all of our lives - hanging on a minuscule amount of cells. At that moment, remembering how hard it was to breathe behind those masks - they make you feel like you're hyperventilating. And maybe we were. But the mask did not stop us from covering Ezra's chemo-soured head with kisses and wondering when he would once again smell like baby shampoo.<br />
<br />
We have never gone into great detail as to the horrors chemo and the transplant process inflicted on Ezra's little body, especially the second time around. Suffice to say that it was horrible. But what is amazing, is the way that his body has healed and dealt with all the changes in the past two and a half years of two transplant journeys. From pre-transplant to the horrors of transplant to post-transplant weight loss and hair loss to the bloating of steroids to the still puffy, but not as puffy of today - it is breathtaking to see how his body has changed. We have been trying to teach Ezra to appreciate the way his body can heal and to take comfort in his body's incredible ability to heal.<br />
<br />
Our hope that Ezra will someday be cured would be impossible without Ezra's miracle needle-in-a-haystack donor. Our hope when we had none. We owe everything to her and we hope she knows how much she means to us. We feel so much gratitude that a cure even exists, as difficult as it may be, and that Ezra's doctors have gotten him this far.<br />
<br />
In celebration of Ezra's life, we are forming Team Ezra for the Gift of Life Bone Marrow Foundation Walk for Life taking place on Sunday, October 26 in Paramus, New Jersey. The event is a 5K walk or run and includes a donor-recipient meeting, kids area and entertainment. All net proceeds from the walk go to adding more donors to the registry. Please join us in honoring Ezra and helping others have a second chance at life. Register for Team Ezra at <a href="http://www.giftoflife.org/njwalk/teamezra" target="_blank">http://www.giftoflife.org/njwalk/teamezra</a>. If you can't make the walk please consider donating to Team Ezra or to our family fundraising page </div>
<div style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody;">
<a href="http://gol.convio.net/site/TR/WalkForLife/General?px=1293644&pg=personal&fr_id=1150" target="_blank">http://gol.convio.net/site/TR/WalkForLife/General?px=1293644&pg=personal&fr_id=1150</a></div>
<div style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody;">
<br /></div>
<div style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody;">
We are also in the process of designing an awesome Team Ezra shirt - stay tuned!<br />
<br />
We celebrated the one year transplant anniversary over the past few days with cake and balloons and a special shirt for Ezra that says "I survived TWO stem cell transplants" (who knew they made such shirts? And in kid sizes?). Our journey for a cure is sadly nowhere near over. We enter year two post-transplant with a certain amount of fear of what may come, but mainly we are hopeful. Hopeful that this year may be the year that Ezra is cured. </div>
<div style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody;">
<br /></div>
<div style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody;">
Ezra has a daily calendar that he fills out each day with his teacher. It has a spot for feelings. Everyday Ezra chooses "Happy" because, as he says, "I am always happy." This is what we hang onto more than anything - our happy little boy who leads us through the darkest of days so that all we see is light. </div>
<div style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody;">
<br /></div>
<div style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody;">
<div class="separator" style="clear: both;">
<a href="https://lh5.googleusercontent.com/-1eDQ6ja7Yfc/U_iX2ByQUBI/AAAAAAAAAlI/sJkSIG9asgs/s640/blogger-image-1925727755.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-1eDQ6ja7Yfc/U_iX2ByQUBI/AAAAAAAAAlI/sJkSIG9asgs/s640/blogger-image-1925727755.jpg" /></a></div>
<br /></div>
Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com4tag:blogger.com,1999:blog-579417770597714459.post-91841604989750418342014-08-17T19:34:00.001-04:002014-08-17T20:48:29.031-04:00Days +354 to +360: We Will Get There<span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">We got back the results of Ezra's monthly T cell check and unfortunately Ezra's T cells decreased this month. The T cells are not as far down as they were in June, but it's enough movement in the wrong direction. The decrease in T cells is likely from the increase in steroids following Ezra's auto-antibody flare-up in June. After giving us the results, Ezra's doctor reassured us that "we will get there." We hold on tight to the belief that we will indeed get there. When and at what cost are the unknowns. We always say we're ok with this process taking a long time - after all, a life saving treatment shouldn't be easy - as long as we are moving forward. It is falling backwards, especially with losing precious T cells, that hurts. </span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">Ezra's toe is still a little red, but improved. We are continuing with the antibiotics for a bit longer and will go from there. His hemoglobin was down this week, but one of the indicators of red blood cell destruction was normal, so the doctors weren't too concerned. We are sitting tight on the steroids for this week and then hopefully be able to wean again next week. </span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">One piece of positive news: the platelet antibody screen came back negative. As of now, Ezra is testing negative for antibodies for all three cell lines! A negative screen doesn't mean that the antibodies are totally gone, but it is a sign that things are quieting down. They sent out another red blood cell antibody screen test on Friday because as we go down on steroids, the antibodies can flare-up again. We are so hoping these tests stay negative. </span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">While the summer is great for us because we can do so much outside, it is also challenging to go to any outdoor public places because so many more people are around in the summer. We did make a great discovery to keep Ezra busy and challenged - mini golf. We discovered a great mini golf place close-by. We are able to go at quiet times and keep distance from the other players. Ezra loves it and even hit a crazy hole-in-one! Last year on this day, Ezra was on Day -5 of chemo in preparation for transplant number two and was already very ill. So grateful to be breathing fresh air far away from the gray of the hospital. </span><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-5B6jAbrh6NE/U_E9LUXTLTI/AAAAAAAAAk4/6epasJ9rus4/s640/blogger-image--1614731912.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-5B6jAbrh6NE/U_E9LUXTLTI/AAAAAAAAAk4/6epasJ9rus4/s640/blogger-image--1614731912.jpg"></a></div><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com0tag:blogger.com,1999:blog-579417770597714459.post-45345919026726410622014-08-10T17:47:00.001-04:002014-08-10T19:27:58.988-04:00Days + 342 to +353: The Revolving Door of Issues<span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">Last week, Ezra's platelet count had dropped again. Just as the red blood cells had come under control, of course his platelets needed to take their turn again and cause problems. The doctor was planning to see his counts this week and then give another round of high dose IVIG. We were feeling frustrated at how difficult it has been to get these auto-antibodies under control. </span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">Then we showed up to clinic on Friday and his platelets had bounced up nicely and are back in the normal range! A pleasant surprise that we will gladly accept. The doctor wanted to do another check of the platelet antibodies, which we haven't done for a while because it requires a tremendous amount of blood. It will be interesting to see what this test shows. </span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">Because there always has to be something, over the weekend, one of Ezra's big toes developed redness around the toe nail. It seems to be infected. He started antibiotics and foot soaks. We will be watching it closely. We are hoping the infection clears up quickly and doesn't cause problems with his counts, which it may do. Here we go yet again.</span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">The doctor also sent out another T cell count check on Friday (yeah, we're not sure how he has any blood left). Ezra's total lymphocyte count, which includes T cells and other types of cells, has been low, so we have no expectations of what this month's T cell count will show. Please prayers for a T cell increase!</span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">As we approach the one year anniversary of Ezra's transplant on August 23, there are a lot of intense memories for us associated with the month of August. This week marks one year from when Ezra was re-admitted to start high dose chemotherapy for the second transplant. Five years ago this past week, a 5 month old Ezra was admitted to our local hospital with labored breathing and would soon be escalated to intensive care. For the first time five years ago, we heard the name "Hyper IgM Syndrome," and life forever changed. August may always be a difficult month for us, but we have plans to change it into a month when we will also always celebrate life and hope. </span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><div><div class="separator" style="clear: both;"><a href="https://lh5.googleusercontent.com/-EP0aiE944ZM/U-focKdRA9I/AAAAAAAAAko/o3gtmBS9__c/s640/blogger-image-1191382738.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-EP0aiE944ZM/U-focKdRA9I/AAAAAAAAAko/o3gtmBS9__c/s640/blogger-image-1191382738.jpg"></a></div><br></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com1tag:blogger.com,1999:blog-579417770597714459.post-85225562199952264432014-07-28T19:19:00.001-04:002014-07-28T20:47:43.644-04:00Days +334 to +341: Got To Keep It Up<span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">Just a quick update to let everyone know that Ezra's counts were once again good this week. Ezra's doctor called his counts "beautiful." His hemoglobin was up and all the other numbers were normal. The only issue, aside from the overarching issue of Ezra needing to grow a new immune system, is his liver function. His liver levels have unfortunately increased again. The doctor believes that it is from the increase in steroids. For now, the plan is to wait and see if the levels decrease as we go down on the steroids. There always has to be something of concern on this crazy journey. </span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">Ezra also had an eye exam to check his eyes for side effects from his two transplants. They are also going to be watching his eyes closely for cataracts, which can be a side effect of steroids. The doctor said it's too soon to see cataracts from the steroids, but for now, Ezra's eyes got an "A++."</span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"></span><br style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">We really, really need a period of calm and good counts to get Ezra off the steroids and immunosuppressant. We went down again by a small amount on the steroids, but it's going to take some time before he's even back to where he was on the wean before this latest flare up. Getting off these drugs is the key to allowing Ezra's donor cells to build him the new immune system he so desperately needs. We know those donor cells are there, waiting to be allowed to grow. We can't wait for them to break Ezra free of his life of isolation, and pray that it is only a matter of time. </span><div><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><br></span></div><div><span style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;"><div class="separator" style="clear: both;"><a href="https://lh5.googleusercontent.com/-xb8uXhBuXdE/U9baZ_HXv4I/AAAAAAAAAkY/Qhgo9sWtoyE/s640/blogger-image-1590488958.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-xb8uXhBuXdE/U9baZ_HXv4I/AAAAAAAAAkY/Qhgo9sWtoyE/s640/blogger-image-1590488958.jpg"></a></div><br></span></div>Help4Ezrahttp://www.blogger.com/profile/14135290666080437936noreply@blogger.com3