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.