Shabbat Shalom.
It is so hard to believe that today has been six weeks since we got that terrible phone call that ended us up in the hospital with Daniel's initial diagnosis of Leukemia. What a whirlwind it has been. So many ups and downs and far more downs than ups. This afternoon we had another phone call while we were having a quite afternoon of recovery at home, while I was making Shabbat dinner for all of us. It looks as though Daniel in fact is not in remission. His bone marrow biopsy results from yesterday show he still (or is regenerating-I am not quite sure actually) Leukemia cells again. enough that instead of considering him in remission and just redoing the rounds of chemo again to ensure it not coming back the doctors tell us we need to change the direction of his treatment. Daniel's chromosome translocation is so unique and difficult to treat that his treatment is equally so. In other words When Daniel goes back into the hospital on Monday it will be for a much more intense and aggressive form of chemotherapy in preparation for a bone marrow transplant. We will meet with the transplant specialist team next week and they will discuss what all of this looks like but it is much more difficult and complex for all of us. The chemotherapy to get Daniel ready for the transplant will make him much more immune to infection and a lot sicker than he has been they tell us. This is not going to get any easier and I only hope Daniel can stay as positive as he has been. I know there will be tougher times ahead, but that we have to stay the course to get Daniel healthy. I wish it were predictable but it has been anything but. And as he has had a day full of nothing but throwing up and sleeping today, when yesterday was full of laughing and eating I could never have predicted this either. So I choose not to bury my head in the sand but also not to plan ahead because who knows what tomorrow will bring.
Shabbat Shalom.
11 Comments
Julie Love
7/18/2014 10:09:00 am
Nadine, we have been praying for Daniel and your family over the past 6 weeks. We will continue to pray for healing, strength, wisdom, peace and grace.
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Rikki mor
7/18/2014 10:29:35 am
Nadine, will there be a place we can find out if our bone marrow is a match??
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Nadine
7/18/2014 10:35:28 am
Rikki,
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Rikki
7/19/2014 02:37:22 am
Ok, keep us posted.
cory shapiro
7/18/2014 10:46:50 am
Our continued prayers are with you and the whole family. nadine, I had my blood tested almost 20 years ago and should be on the registry. I know that family can be possible matches. I would not hesitate for one second to give mine if it was a match. Love as always, Cory and family
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Mara Koven
7/18/2014 12:13:08 pm
Nadine,
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Baba
7/18/2014 12:16:53 pm
Daniel, there is so much love and strength with support for you, you will fight as hard as all of us are for you.
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Wendy
7/18/2014 05:35:36 pm
I believe Your positive attitude as well as Daniels, will make things go as well as they possibly can and when you need people to help support that at times, I know you have all you need. I have also been on the registry for many years, always willing to help.
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Shane and Mitzi
7/18/2014 09:30:50 pm
Our hearts go out to you and your family. We are thinking about you every day and looking forward to hearing when you find a perfect match. Stay strong!
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Andrew Hudson
7/19/2014 02:33:31 am
We are the screaming fans on the sidelines with the big foam fingers cheering for Daniel and the family. I hope it provides an additional source of motivation for this battle. Know we will do anything you need us to do.
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Brenda Lyons
7/20/2014 01:29:01 pm
Hello Nadine and Rob and Daniel and Matthew,
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