Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 We have a date! On May 10th, Jan goes back to New Haven and her own apartment! Her tests this week were totally unremarkable (that is: NORMAL). We don't know where her immune system is, but she really needs to get back out of social isolation. She will go into a new " transition " program which helps the Chapel Haven grads make the bridge between being students learning about independence and being independent. She will be back with her friends and we hope that she will get our choice of life skills counsellors. This is BIG! A year ago the AML came back and it was clear that the only path to survival was a bone marrow (t-cell) transplant. The good news was that her brother was a suitable donor. The procedure is extremely risky and fits our definition of a MME (most miserable experience), but now she's pulled through that and is on the back side. Her weight is down 50 pounds from her peak (something we hope to hold) and her strength has recovered since the first of the year. Only a couple of illnesses. One after Christmas when she got a bug from either Mom or me and threw it off faster than either of us and one two months ago when the line she had in got infected. The latter was a week (preventive) in the hospital. This will help with Mom's sanity and it will let Jan get back to the (almost) independent life that she craves. Thanks to all of you who have provided prayers and support over the past few years. Miracles do happen sometimes, even though I am saddened by when they don't. Rick p.s. The Bone Marrow Registry is a BIG DEAL. It needs as many people as it can get. This used to be a procedure which put the donor at risk. The procedure used for Kev (Jan's brother) was a set of shots (given by his wife) to get him to generate more t-cells and push them into the blood stream. Then on donation day, he was set up with a set of lines that pulled blood out, ran through a machine that separated the t-cells, and gave him the rest back. He produced seven million t-cells, with six million given to Jan and the rest saved should they be later needed. His discomfort level never got beyond tylenol, although more was available. He wasn't at risk as he would have been if they had tried to actually harvest bone marrow. The cells were preserved until Jan was ready and then came in by IV. They set up camp in her bone marrow, fought any remaining cancer cells, and started to work. Now, she has boy blood and the t-cells and white cells are not down syndrome. Is she now mosaic? ;-> http://www.marrow.org/ This is now a low risk sign-up and if a match is made .. it can save a life! Rick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 In a message dated 4/30/2004 1:18:43 AM Central Daylight Time, rdill@... writes: > Miracles do happen sometimes, even though I am saddened by > when they don't. As we all are Rick. I am just so thankful that the Lord allowed Jan continued time here with her family. We will never understand why God performs miracles for some and for some, we think not. I always like to think of these things as a tapestry. There are many threads on the underneath that go every which way and do not make a whole lot of sense to the eye, but when you turn it over the picture is magnificent. I like to think that when we get to heaven that we will see the tapestry and understand why which threads went which way. And that they did so in order that the whole tapestry would be completed and beautiful. That all the stitches make sense. They certainly all do interconnect some are longer and more complex than others. Some are shorter and just a stitch to hold the others. Sometimes those small insignificant stitches are the one that anchors everything together, even though the stitch is so brief. The underneath looks chaotic and not so pretty to our eye as life does sometimes. I look forward to the day when I see the tapestry itself and know that all will make sense. Until then I trust that the stitches do make sense and the weaver has in all in hand. I rejoice with your family over Jan's stitches in life and that the Master Creator of the divine tapestry continues to use the thread of Jan's life to continue to create his masterpiece. I will never forget Jan or the experience that I as well as others on this list have shared with you and your family through our thoughts and prayers. I guess you could say we are all just more of those stitches that God has used and that someday we will see the threads of our lives and how they have crossed and made sense.. What a privelege and blessing that we were allowed to share this miracle of Jan's life with you all! Loree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 Fantastic news Rick...I am registered as a marrow donor, I hope someday I'm a match for somebody out there! Karla in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 Wow Rick!! This is wonderful! What a great thing for Jan to be able to do. We are very excited for her. Sharon THE NEWS !!!! > We have a date! On May 10th, Jan goes back to New Haven and her own > apartment! Her tests this week were totally unremarkable (that is: > NORMAL). We don't know where her immune system is, but she really needs > to get back out of social isolation. > > She will go into a new " transition " program which helps the Chapel Haven > grads make the bridge between being students learning about independence > and being independent. She will be back with her friends and we hope > that she will get our choice of life skills counsellors. > > This is BIG! A year ago the AML came back and it was clear that the > only path to survival was a bone marrow (t-cell) transplant. The good > news was that her brother was a suitable donor. The procedure is > extremely risky and fits our definition of a MME (most miserable > experience), but now she's pulled through that and is on the back side. > Her weight is down 50 pounds from her peak (something we hope to hold) > and her strength has recovered since the first of the year. > > Only a couple of illnesses. One after Christmas when she got a bug from > either Mom or me and threw it off faster than either of us and one two > months ago when the line she had in got infected. The latter was a week > (preventive) in the hospital. > > This will help with Mom's sanity and it will let Jan get back to the > (almost) independent life that she craves. > > Thanks to all of you who have provided prayers and support over the past > few years. Miracles do happen sometimes, even though I am saddened by > when they don't. > > Rick > > p.s. The Bone Marrow Registry is a BIG DEAL. It needs as many people as > it can get. This used to be a procedure which put the donor at risk. > The procedure used for Kev (Jan's brother) was a set of shots (given by > his wife) to get him to generate more t-cells and push them into the > blood stream. Then on donation day, he was set up with a set of lines > that pulled blood out, ran through a machine that separated the t-cells, > and gave him the rest back. He produced seven million t-cells, with six > million given to Jan and the rest saved should they be later needed. > His discomfort level never got beyond tylenol, although more was > available. He wasn't at risk as he would have been if they had tried to > actually harvest bone marrow. > > The cells were preserved until Jan was ready and then came in by IV. > They set up camp in her bone marrow, fought any remaining cancer cells, > and started to work. Now, she has boy blood and the t-cells and white > cells are not down syndrome. Is she now mosaic? ;-> > > http://www.marrow.org/ > > This is now a low risk sign-up and if a match is made .. it can save a > life! > > Rick > > > > Click reply to all for messages to go to the list. Just hit reply for messages to go to the sender of the message. > Quote Link to comment Share on other sites More sharing options...
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