Sunday, August 28, 2016

Third 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!

Sunday, May 15, 2016

Finding His Voice

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.   

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. 

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.

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. 

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. 

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. 

Friday, November 27, 2015


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? 

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.

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. 

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. 

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. 

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. 

Saturday, October 10, 2015

Team Ezra - Walk for Life 2015

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.  
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.
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 on Sunday, October 25 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.
We would love for you all to join us! Ezra is very excited to see Team Ezra in action once again!
You can join the team and set up your own fundraising page here: 

Or please consider donating to our family team here: 
We are forever grateful to all of you for your unending support of our family over the past 6 years.
Robin, Evan and Ezra


Sunday, August 23, 2015

Two Years: A Miracle Unfolding

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. 

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). 

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. 

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. 

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." 

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. 

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. 

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. 

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. 

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!

Monday, June 22, 2015

Days of Wonder and Awe

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 (you don't need to be on FB to view them).

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.

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.

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.

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. 

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. 

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. 

Sunday, April 26, 2015

Spring Awakening

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. 

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. 

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 ;)

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. 

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. 

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. 

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.