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!
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!
