Hospital Options
Dear Max fans,
I think our last email started with "Things have changed" and that's probably going to be the case from here on out. When we last wrote, we spoke of the movement towards transplant and that we thought we could do it at Children's Memorial Hospital. We have come to learn that while their experience in performing transplants for children is extensive, it's minimal at best when dealing with Hurler kids. The doctors there feel that their experience is enough to give us confidence, but in talking to so many families who have been through transplant and with the MPS society, we have been told again and again that Hurler children can be very tricky and experience really does matter.
We've been in contact with many families now, and the personal experiences have been very encouraging and also frighteningly real. The important thing is that these families have helped us prepare for what we are about to face and have made themselves available for support at any time.
In addition, we have made contact with doctors at Duke and at Fairview (Univ. Of Minnesota) and their response and interest in Max has been amazing. They both have been working with these kids for so long, and they are eager to have another little guy to aid in the ongoing search for a master plan for treatment.
Children's is not out of the options yet, it's far too good of a hospital and of a situation for our whole family to just write it off. We will have more meetings with the team there in the near future, and we are going to be direct about our need for confidence. If it is not met, we are trying to prepare ourselves for a situation that would take us away from home for a long period of time. We have a call in with Minnesota to take a trip north for a consultation, and we are also looking into traveling to Duke.
We have read of many families that did not travel to get treatment and we have read of families who lost children at even these top hospitals. There are no easy choices.
In other news, we are going to be telling you all of a website for Max that our friend Chris is making for us. She'll be maintaining it and coordinating our updates once it's online, and we will have our updates there, links to sites we are finding, and a message board for all of you to contact us and each other. We will send an update out when it's ready.
As for Miss Grace, she has been a trooper thorough all of this. As she will readily tell anyone, she was very brave when she got her blood checked at the 'kids hospital." She knows if her blood matches Max's she will get to share some with him. She loves to make her brother laugh, and will do just about anything to get him to giggle (including bonking herself on the head). She is obsessed with dresses, and we have to do quite a bit on convincing to make her wear pants. We are going to be taking her to the movies to see
Finding Nemo tomorrow.
Thanks again for the kind words of encouragement, and for sharing our story with those around you. It's been very surprising to hear from so many people near and far. Sorry if we have been a little late in responding to some emails and calls, please know how much they are appreciated even if we don't get back to you right away.
We will keep you posted on everything.
Sincerely,
Margaret & Mike
I think our last email started with "Things have changed" and that's probably going to be the case from here on out. When we last wrote, we spoke of the movement towards transplant and that we thought we could do it at Children's Memorial Hospital. We have come to learn that while their experience in performing transplants for children is extensive, it's minimal at best when dealing with Hurler kids. The doctors there feel that their experience is enough to give us confidence, but in talking to so many families who have been through transplant and with the MPS society, we have been told again and again that Hurler children can be very tricky and experience really does matter.
We've been in contact with many families now, and the personal experiences have been very encouraging and also frighteningly real. The important thing is that these families have helped us prepare for what we are about to face and have made themselves available for support at any time.
In addition, we have made contact with doctors at Duke and at Fairview (Univ. Of Minnesota) and their response and interest in Max has been amazing. They both have been working with these kids for so long, and they are eager to have another little guy to aid in the ongoing search for a master plan for treatment.
Children's is not out of the options yet, it's far too good of a hospital and of a situation for our whole family to just write it off. We will have more meetings with the team there in the near future, and we are going to be direct about our need for confidence. If it is not met, we are trying to prepare ourselves for a situation that would take us away from home for a long period of time. We have a call in with Minnesota to take a trip north for a consultation, and we are also looking into traveling to Duke.
We have read of many families that did not travel to get treatment and we have read of families who lost children at even these top hospitals. There are no easy choices.
In other news, we are going to be telling you all of a website for Max that our friend Chris is making for us. She'll be maintaining it and coordinating our updates once it's online, and we will have our updates there, links to sites we are finding, and a message board for all of you to contact us and each other. We will send an update out when it's ready.
As for Miss Grace, she has been a trooper thorough all of this. As she will readily tell anyone, she was very brave when she got her blood checked at the 'kids hospital." She knows if her blood matches Max's she will get to share some with him. She loves to make her brother laugh, and will do just about anything to get him to giggle (including bonking herself on the head). She is obsessed with dresses, and we have to do quite a bit on convincing to make her wear pants. We are going to be taking her to the movies to see
Finding Nemo tomorrow.
Thanks again for the kind words of encouragement, and for sharing our story with those around you. It's been very surprising to hear from so many people near and far. Sorry if we have been a little late in responding to some emails and calls, please know how much they are appreciated even if we don't get back to you right away.
We will keep you posted on everything.
Sincerely,
Margaret & Mike
posted by Mike Ciacciarelli
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