Today, one year ago, you received again, the miracle of life!
We love you, Erica!
God Bless You!
Friday, January 23, 2009
Friday, January 16, 2009
Check Up Time
Erica had her 1 year post-transplant check up yesterday. Her transplant actually took place on January 23, 2008 . . . so we are just days away from the anniversary. Can you believe it? I think back to this time, just one year ago, and we were so filled with questions and hypothetical situations, warnings and concerns. We just didn't know what to expect; the spectrum of possibilities was so vast.
But here we are and so many of those questions are now answered. Erica's transplant was successful in that her body accepted the organ and she stayed virus free through her very tender recovery. I look back on photos from last April and barely recognize her; she was so puffy from the super high dose of steroids and other medications. She has come a very long way; and she has done it with a very special spirit about her.
Yesterday she had a echo, several blood tests and the basic vitals. She met with two of her docs and wowed them with her curly hair and high energy. Some tests that we got back look good and we are waiting on the others. There is no indication that we should fear any of the feedback.
Dr. Taylor did confirm that she has GVHD on her hands and in her mouth. We continue to treat it topically but this may be the on-going issue for Erica. The important thing is that we keep her hands treated because if they continue to go through this cycle, she could have very severe thickening of the skin which could, in turn, cause mobility issues within her joints. We are turning up our attention to this issue and will make sure that this stays treated with Dr. Taylor's recommendations.
The broviac . . . well, it is up to us now. Erica could have her broviac (tubes in her chest) removed when we give the green light. This is an emotional decision. Erica has had these tubes in her chest (connecting to the artery) since she was 4 months old; it is all we have ever known. Erica does not know her body without these tubes. They are labor intensive and certainly make for unique criteria. But those have been the tubes through which she has all of her blood, platelets, chemo, blood draws, fluids, IVIG, anti-nausea, medications, etc. They have literally been her "life lines". When the broviac comes out, her bi-monthly blood draws will mean getting poked. This will be a little painful but this is were we weigh the benefits. There is a sense of security in these lines, a safety-net we feel that we have in case anything happens . . . for times when she needs something right away. I realize that this thinking is from the past . . . the late night trips to the ER. We need to realize now that it is time to move on, Erica does not need these lines like she did in the past. I have spoken with other cancer-moms about this and I feel supported in my feelings about this; it is a very unique decision.
About the donor: there are only a couple of transplant donor centers in the country that require a 2-year waiting period to contact the donor . . . and Erica's donor came from one of those centers. SO, this is a bummer. We sent in the initial paperwork and that is the news that came back to us through our nurse coordinator, Kaye. And so we will wait till next year to meet our hero!
Thanks for your prayers and for checking in!
Big hugs from Erica!
Are you a "regular" to Erica's site? Please let us know . . . join "followers of Erica's Journey" on the right side of this page!
But here we are and so many of those questions are now answered. Erica's transplant was successful in that her body accepted the organ and she stayed virus free through her very tender recovery. I look back on photos from last April and barely recognize her; she was so puffy from the super high dose of steroids and other medications. She has come a very long way; and she has done it with a very special spirit about her.
Yesterday she had a echo, several blood tests and the basic vitals. She met with two of her docs and wowed them with her curly hair and high energy. Some tests that we got back look good and we are waiting on the others. There is no indication that we should fear any of the feedback.
Dr. Taylor did confirm that she has GVHD on her hands and in her mouth. We continue to treat it topically but this may be the on-going issue for Erica. The important thing is that we keep her hands treated because if they continue to go through this cycle, she could have very severe thickening of the skin which could, in turn, cause mobility issues within her joints. We are turning up our attention to this issue and will make sure that this stays treated with Dr. Taylor's recommendations.
The broviac . . . well, it is up to us now. Erica could have her broviac (tubes in her chest) removed when we give the green light. This is an emotional decision. Erica has had these tubes in her chest (connecting to the artery) since she was 4 months old; it is all we have ever known. Erica does not know her body without these tubes. They are labor intensive and certainly make for unique criteria. But those have been the tubes through which she has all of her blood, platelets, chemo, blood draws, fluids, IVIG, anti-nausea, medications, etc. They have literally been her "life lines". When the broviac comes out, her bi-monthly blood draws will mean getting poked. This will be a little painful but this is were we weigh the benefits. There is a sense of security in these lines, a safety-net we feel that we have in case anything happens . . . for times when she needs something right away. I realize that this thinking is from the past . . . the late night trips to the ER. We need to realize now that it is time to move on, Erica does not need these lines like she did in the past. I have spoken with other cancer-moms about this and I feel supported in my feelings about this; it is a very unique decision.
About the donor: there are only a couple of transplant donor centers in the country that require a 2-year waiting period to contact the donor . . . and Erica's donor came from one of those centers. SO, this is a bummer. We sent in the initial paperwork and that is the news that came back to us through our nurse coordinator, Kaye. And so we will wait till next year to meet our hero!
Thanks for your prayers and for checking in!
Big hugs from Erica!
Are you a "regular" to Erica's site? Please let us know . . . join "followers of Erica's Journey" on the right side of this page!
Saturday, January 3, 2009
New Year!
The holiday season was very much celebrated this year for our family. It was our first Christmas without having to be in the hospital, getting blood counts, and preparing for procedures. Erica was footloose and fancy free! She enjoyed her time with friends and family and she loved opening gifts (no matter who they were for).
We toasted to health in the new year and we all continue to pray for Erica's lifelong remission, that at age ten, she could be considered "cured". It will continue to be our daily prayer.
So the new year marks a new beginning and one that brings with it the anniversary of Erica's transplant and the opportunity to meet her donor. We will be making preparations in the coming weeks to work with the National Bone Marrow Registry on the petition to meet this young man. It is his ultimate decision as to whether he wishes to meet us. I have faith in the best outcome, either way. We will also look forward to her Broviac lines being taken out some time this year; a true marker of completed treatment. Erica has only ever known her body with tubes coming out of her chest, I remain curious as to her response to their removal. This procedure could still be several months out . . . but certainly something worth looking forward to.
The growth hormone injections are getting better and better. Erica knows the drill and we are much more comfortable with the process. The amazing thing is that she has already grown a half inch. If you are keeping track, she is now up to 29 inches. Grow baby, grow!
I haven't posted in awhile, but I am back in the routine and will post more often. I must say, it has been nice to take a break. Please know that in our case, "no news is good news".
We wish you a happy, healthy new year. There are so many things happening in our world right now that serve as constant reminders of how fortunate we are to be healthy, to be sheltered and to be loved. God bless.
We toasted to health in the new year and we all continue to pray for Erica's lifelong remission, that at age ten, she could be considered "cured". It will continue to be our daily prayer.
So the new year marks a new beginning and one that brings with it the anniversary of Erica's transplant and the opportunity to meet her donor. We will be making preparations in the coming weeks to work with the National Bone Marrow Registry on the petition to meet this young man. It is his ultimate decision as to whether he wishes to meet us. I have faith in the best outcome, either way. We will also look forward to her Broviac lines being taken out some time this year; a true marker of completed treatment. Erica has only ever known her body with tubes coming out of her chest, I remain curious as to her response to their removal. This procedure could still be several months out . . . but certainly something worth looking forward to.
The growth hormone injections are getting better and better. Erica knows the drill and we are much more comfortable with the process. The amazing thing is that she has already grown a half inch. If you are keeping track, she is now up to 29 inches. Grow baby, grow!
I haven't posted in awhile, but I am back in the routine and will post more often. I must say, it has been nice to take a break. Please know that in our case, "no news is good news".
We wish you a happy, healthy new year. There are so many things happening in our world right now that serve as constant reminders of how fortunate we are to be healthy, to be sheltered and to be loved. God bless.
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