Meet Elizabeth and her sweet family! She and I have been having quite a correspondence--some interesting things have come up.More about that soon.
Thursday, May 6, 2010
Zoe's Donor
Meet Elizabeth and her sweet family! She and I have been having quite a correspondence--some interesting things have come up.More about that soon.
Thursday, April 29, 2010
And now, a word from our donor!
Dear ones~
It's been long since I've posted but, as I've said before--no news is great news. Zoe is just an amazing and thriving little light.
I sent her donor a thank you card about a month or so ago-- I wasn't allowed to provide any specific details about ourselves, including names and where we live. The marrow donation system requires anonymity until a year after the transplant, and then consent forms must be filled out indicating what information would be okay to share.
Here's my thank you note:
Not 30 minutes ago I received a lovely, sob inducing email from our donor, who lives in Florida. I will post the picture of her and her family she sent me if she gives me permission to do so:
Wowie, wow. Ain't that just a jolt of joy for your day? It certainly is for mine.
It's been long since I've posted but, as I've said before--no news is great news. Zoe is just an amazing and thriving little light.
I sent her donor a thank you card about a month or so ago-- I wasn't allowed to provide any specific details about ourselves, including names and where we live. The marrow donation system requires anonymity until a year after the transplant, and then consent forms must be filled out indicating what information would be okay to share.
Here's my thank you note:
Dear Donor~
Across from me is a darling, vibrant, healthy, spirited, and very much alive little two year old. She is our only child-- and she is here today because you cared enough to sign up for the bone marrow registry and make your very cells available to save her.
How many people do you know who can say that they know they have personally saved a life?
Well, you can because you did.
My husband and I are so grateful to you and for you. Thank you, thank you. The words don't express the depth of our gratitude, but know that the sentiment is there.
Bless you!
Signed,
Very Grateful Parents
PS. We are sending in a form stating that we would be willing to let you know more about our daughter should you like to know more about the little person whose life you saved. Namaste!
Not 30 minutes ago I received a lovely, sob inducing email from our donor, who lives in Florida. I will post the picture of her and her family she sent me if she gives me permission to do so:
Dear Kellie and Zoe,
I received your email today and could not wait to respond to your beautiful letter. Your kind words and thrilling news of Zoe's health brought tears to my eyes (numerous times) and to everyone here in Florida. We have all been praying for and sending healing thoughts to Zoe since last January.
When I found out a year ago December that I was lucky enough to be a perfect match and possibly save someone's life I felt like I was given a gift. Your letter was another gift that I will treasure.
My boys and I love to watch the television program Extreme Makeover, Home Edition. Over tears, we talk of how lucky Ty and his crew are to be able to help families improve the quality of their lives by giving them safe homes, paying their bills, sending kids to college, etc. On the day that we found out that I was going to be able to donate my marrow to help Zoe, my middle son, Dustin, looked at me and said, "now you get to be "Ty Peddington" too". And with your news, I did feel a bit like Ty. Honored, and ecstatic, that I was able to help improve the quality of your family's life.
Kellie, I can't imagine the heartache you have all gone through over the past two years. You must be savoring everyday. I bet there will be no "terrible two's" in your home.
I don't believe in coincidences, so I find it interesting that you are from Seattle. I was born in Bellevue (many years ago) and my dearest friend is a pediatric cardiologist at Children's Hospital and at the University out there. Coincidentally, she had her first daughter about two weeks after Zoe had her bone marrow transplant and I was out visiting her last March.
Thank you so much for sending me the update of Zoe's health. It means the world to me.
Namaste,
Elizabeth
P.S. I have attached a picture of my family: my husband, Daren, and boys Jonah (13), Dustin (11) and Trey (7).
Wowie, wow. Ain't that just a jolt of joy for your day? It certainly is for mine.
Sunday, February 28, 2010
Odds and Ends
Man, amazing how easy it is to get out of the habit of blogging. To think that I did it every night for months...
So, we did take Zoe in for her one-year-post-transplant meeting, and it was full of hopeful news. Prior to the meeting she had to have a major blood panel run, an x-ray to survey her bones and a dental exam.
The x-ray showed that her bones were no longer the characteristically too-thick bones of an osteopetrotic child, but rather that they were now on the thin side. There was now plenty of bone marrow space; the thinness was a result of prolonged steroid use for the treatment of GVHD.
Blood counts were all normal save for elevated eosinophils,a possible indicator of the presence of chronic GVHD. Of interesting note, her lymphocyte levels are completely normal for her age, which is pretty well unheard of for someone this point past a bone marrow transplant.
Given all of the test results, Dr. Carpenter decided that it's time to wean Zoe off the steroids and Tacrolimus (the major anti-GVHD drug) to see how she does. She's been completely off of the steroid for her gut since a week after the meeting and starts the Tacrolimus taper tomorrow. If she has a flare-up of GVHD as a result of the taper then they'll likely put her back on Tacrolimus as well giving her a brief burst of prednisone to deal with the flare-up.
Hopefully it won't come to that, but I have to constantly remind myself that GVHD is highly likely in Zoe's case due to her having a stem cell transplant (which comes with a high rate of GVHD--especially when from an unrelated donor).
But. I don't need to borrow trouble.
The super great news was that Zoe was given the all clear to go out in public and interact with the world! This has been such a great new experience for us all. To be sure she is still immunocompromised (due to the Tacrolimus), but the SCCA folks find that when the critical year of isolation after transplant is accomplished, it's more important for the person to be socialized and integrated into a more normal life than for them to be protected from all germs. Certainly we are to still keep her away from sick people if possible and continue to practice good hand washing practices while dealing with her.
I took her back to her PEPS group for the first time since we quit it almost 2 years ago now. What a trip. Zoe spent much of the evening fretting with her fingers in her ears as it was louder, with two-year-olds yammering and parents talking over them, than she was accustomed to experiencing. It's going to be a bit of work to push her comfort envelope to include more chaos and cacophony.
Among the new stuff she has been enjoying has been our sojourns to places where she can cruise around in the gait trainer that we've been borrowing for her. As she doesn't yet walk, the gait trainer gives her the ability to experience walking while being supported. She cruises around the park or the gym (depending where I take her) and pauses to do a little happy dance, stomping her feet and bouncing up and down.
The girl knows how to attract attention.
We try to take her out for physical activity like this every day; gradually our parental experience widens as her horizons broaden. Just as Zoe is delayed in many skills and abilities for her age, I feel like a remedial parent who is trying to figure out what to do with a 2 year old who is now allowed to go out into the world.
How, exactly, does one do this??
Zoe has two new obsessions (crackers, alas, have fallen by the wayside): chairs and the piano.
"Chair!" "Chayuh!" "Chaaaaaayuh!" She loves to be sat into one--especially with arms. I took her to a story telling evening for kids at the local library a couple weeks past, and she spent the entire time she was there saying "chair!" over and over again while she sat and seat-danced in the one she was sitting.
The piano is another love for her. While I or Jeff sit at the piano she sits on our laps and moves our hands like a puppeteer, providing the rhythm for the songs she knows while we supply the melody. Lately we've been sitting her to the side of us at the keyboard in her high chair and doing duets with her. She plunks away happily at the upper keys while one of us noodles at the lower keys--and it all sounds surprisingly nice. 'Course, we've got the biased ears of doting parents, but as we're not trying to sell tickets I think that's alright.
Check the Youtube link for more additions in the coming days--you'll get to see the duet above in action.
So, we did take Zoe in for her one-year-post-transplant meeting, and it was full of hopeful news. Prior to the meeting she had to have a major blood panel run, an x-ray to survey her bones and a dental exam.
The x-ray showed that her bones were no longer the characteristically too-thick bones of an osteopetrotic child, but rather that they were now on the thin side. There was now plenty of bone marrow space; the thinness was a result of prolonged steroid use for the treatment of GVHD.
Blood counts were all normal save for elevated eosinophils,a possible indicator of the presence of chronic GVHD. Of interesting note, her lymphocyte levels are completely normal for her age, which is pretty well unheard of for someone this point past a bone marrow transplant.
Given all of the test results, Dr. Carpenter decided that it's time to wean Zoe off the steroids and Tacrolimus (the major anti-GVHD drug) to see how she does. She's been completely off of the steroid for her gut since a week after the meeting and starts the Tacrolimus taper tomorrow. If she has a flare-up of GVHD as a result of the taper then they'll likely put her back on Tacrolimus as well giving her a brief burst of prednisone to deal with the flare-up.
Hopefully it won't come to that, but I have to constantly remind myself that GVHD is highly likely in Zoe's case due to her having a stem cell transplant (which comes with a high rate of GVHD--especially when from an unrelated donor).
But. I don't need to borrow trouble.
The super great news was that Zoe was given the all clear to go out in public and interact with the world! This has been such a great new experience for us all. To be sure she is still immunocompromised (due to the Tacrolimus), but the SCCA folks find that when the critical year of isolation after transplant is accomplished, it's more important for the person to be socialized and integrated into a more normal life than for them to be protected from all germs. Certainly we are to still keep her away from sick people if possible and continue to practice good hand washing practices while dealing with her.
I took her back to her PEPS group for the first time since we quit it almost 2 years ago now. What a trip. Zoe spent much of the evening fretting with her fingers in her ears as it was louder, with two-year-olds yammering and parents talking over them, than she was accustomed to experiencing. It's going to be a bit of work to push her comfort envelope to include more chaos and cacophony.
Among the new stuff she has been enjoying has been our sojourns to places where she can cruise around in the gait trainer that we've been borrowing for her. As she doesn't yet walk, the gait trainer gives her the ability to experience walking while being supported. She cruises around the park or the gym (depending where I take her) and pauses to do a little happy dance, stomping her feet and bouncing up and down.
The girl knows how to attract attention.
We try to take her out for physical activity like this every day; gradually our parental experience widens as her horizons broaden. Just as Zoe is delayed in many skills and abilities for her age, I feel like a remedial parent who is trying to figure out what to do with a 2 year old who is now allowed to go out into the world.
How, exactly, does one do this??
Zoe has two new obsessions (crackers, alas, have fallen by the wayside): chairs and the piano.
"Chair!" "Chayuh!" "Chaaaaaayuh!" She loves to be sat into one--especially with arms. I took her to a story telling evening for kids at the local library a couple weeks past, and she spent the entire time she was there saying "chair!" over and over again while she sat and seat-danced in the one she was sitting.
The piano is another love for her. While I or Jeff sit at the piano she sits on our laps and moves our hands like a puppeteer, providing the rhythm for the songs she knows while we supply the melody. Lately we've been sitting her to the side of us at the keyboard in her high chair and doing duets with her. She plunks away happily at the upper keys while one of us noodles at the lower keys--and it all sounds surprisingly nice. 'Course, we've got the biased ears of doting parents, but as we're not trying to sell tickets I think that's alright.
Check the Youtube link for more additions in the coming days--you'll get to see the duet above in action.
Thursday, January 21, 2010
Day +365
It's been a year to the day since Zoe's transplant.
She's doing great, so great--but you've probably gotten that general idea from the last several, though infrequent posts.
Next week we go to SCCA on Monday and Wednesday for check-ups and conferences that constitute her one year anniversary check-in. Last time we saw Dr. Carpenter it sounded like he'd be starting her tacrolimus (anti-GVHD medication) taper at this one year mark. We'll have more news on that, as well as on other "next steps"after next week.
As I am short on time for words, here are a couple videos that show how far our little Z.E.N. girl has come. The first is of her taken one day before transplant. It was hard for me to watch again--she's so doped up and weak in the vid, but it shows her spirit shining through.
The second one was taken of Zoe just today.
Enjoy.
She's doing great, so great--but you've probably gotten that general idea from the last several, though infrequent posts.
Next week we go to SCCA on Monday and Wednesday for check-ups and conferences that constitute her one year anniversary check-in. Last time we saw Dr. Carpenter it sounded like he'd be starting her tacrolimus (anti-GVHD medication) taper at this one year mark. We'll have more news on that, as well as on other "next steps"after next week.
As I am short on time for words, here are a couple videos that show how far our little Z.E.N. girl has come. The first is of her taken one day before transplant. It was hard for me to watch again--she's so doped up and weak in the vid, but it shows her spirit shining through.
The second one was taken of Zoe just today.
Enjoy.
Wednesday, January 6, 2010
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