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.

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:

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.

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.

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.

Happy 2nd Birthday, Zoe!!

We thought it only fitting her special cake would be made of crackers.

Piercing the Darkness: Developments in Optic Nerve Regeneration research

Today we leave the gathering darkness behind and welcome the return of the Light:

Happy Solstice, Beloveds!

Zoe is blind, that we know, and at any other time prior to this point it would be safe to say that she would be blind for life. But with technology and scientific advances happening almost as fast as they can imagine it, there is a chance that Zoe may get to see some day.

I had heard of people traveling to China to receive stem cell therapy for optic nerve regeneration, but not only are the treatments prohibitively expensive (at least $20K per treatment, and they recommend multiple treatments), but the results they have are limited. It all seems a bit too experimental and unregulated to me to even consider considering it.

Closer to home I discovered the Schepens Eye Research Institute online and made use of their "patient liaison", Richard Godfrey, to get educated on what they know about developments in optic nerve regeneration. The following is some text extracted from literature he sent me.

Regenerative Research:

As our knowledge of stem cells has expanded, so has the breadth of our research. A few short years ago, all the focus was on embryonic stem cells and research was limited by the ethical issues and related federal funding ban. Since then, we also have access to progenitor cells, adult stem cells that also have great potential without some of the limiting factors of embryonic stem cells mentioned above. Now, we have discovered that the human body has already existing, dormant stem cells in the central nervous system (CNS) which includes the spinal cord, brain, optic nerve and retina. With both embryonic stem cells and adult stem cells, additional research needs to be done to both develop consistent sources of stem cells and develop a surgical or other stem cell delivery technique. This new approach of activating already existing, dormant stem cells may eliminate the need for these added steps. In addition to knowing that these cells exist, we also now know the molecules that are responsible for that dormancy and we have identified the drug that can activate them. This drug then is likely to become the foundation of a new drug that will both activate and coax these cells to become the kind of cells needed in our goal to restore vision.

In optic nerve regeneration, we know that there are three barriers against regeneration we need to overcome in order to develop a therapy. We already know that the original drug will overcome the first barrier (dormancy) and the second barrier (scar), but the third barrier still must be overcome. This barrier comes from the proteins of the myelin (sheath covering the optic nerve) that send signals preventing regrowth. So the goal is, using the original drug as a foundation, build a new drug to overcome all the barriers safely and reliably.

At the Schepens Eye Research Institute, an affiliate of Harvard Medical School located in Boston, our regenerative center, The Ocular Regeneration Research Center, is made up of 3 separate laboratory teams exploring the great potential of stem cell and gene therapy technologies. The goal of all the labs is the repair/regeneration of the retina and optic nerve. Both are made up of nerve cells, which share the same barriers to regeneration that we are working to overcome. The real strength of Schepens' regenerative research is these 3 labs, 3 research teams, with varied approaches, working collaboratively, are making the idea of vision a reality in coming years. It is a very powerful combination.

Some of the group's individual accomplishments include:

• Dr.Feng Chen's first ever regeneration of the optic nerve in mice

• Dr. Michael Young's years of transplanting brain and retinal stems cells into mice and pigs in preparation for the next step, human retinal damage repair/regeneration

• Dr. Kameran Lashkari's novel, new discovery of adult progenitor cells from the retinas of premature babies that seem to migrate to damaged optic nerve and retina

• Dr. Chen's discovery of the mechanism to reawaken already existing, dormant stem cells in the retina, optic nerve and brain

• Dr. Young's discovery of the molecule in stem cells that is the key to integrating transplanted nerve cells into damaged tissue.

Well, that all sounds promising, eh? But it's not only optic nerve regeneration that might allow Zoe to see in the future. Technology may light up the darkness for her.

The Brainport Device is an amazing doo-dad in development that allows blind people to actually experience vision in the brain via the nerves on the tongue.

Say what?

The article (linked above) can explain the workings of the device better than I can, but remember that it's not really the eyes that see, it's the brain that sees--the eyes just give it the information it needs to experience vision. The Brainport device simply gives the brain the information it needs through different nerves. It's all very heady stuff, but I am just so impressed with the brain that thought of this whole concept in the first place.

For those of you who'd like to see the unit in action, check this video out:



(And, speaking of videos--check the YouTube link for about five recent video uploads of Zoe stuff.)

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On the home front, we're still all doing really well--so nice to be redundant on that subject!

We took Zoe in for a year-post-surgery-check-up with Michael Cunningham (always a pleasure to see him), and he was well satisfied with Zoe's progress. Recent CT scans showed definite signs of bone remodeling in her skull, as well as a gradual evening out of her bumpy-headed appearance. He felt like we shouldn't even consider the idea of a follow up surgery until Zoe's about 5 years old (as opposed to the usual 3 years of age for most craniosynostosis patients); he just felt like she's been through too much already and that another procedure so soon could 'break her".

We're fine with that approach.

Zoe also had a check-in with her transplant team at SCCA with accolades on that front as well. The extensive labs they drew showed that she "has an immune system" and that it is more robust than most patients this soon after transplant. To be sure, we still have to take care not to expose her to sickness as she is immunocompromised compared to the average person, but good news nonetheless!

Zoe is thriving on the whole food purees we are feeding her fresh from the Vitamix through her G tube. Although certain to be filed under "To Much Information", her poops are finally normal for the first time in a year, making it lovely for her not to have to suffer awful, chronic diaper rash (and for us not to have to deal with diarrhea all day long). Although concocted to meet supposedly all of her nutritional needs, the formula she was on for 9 months simply wasn't agreeing with her as much as this whole food mix we're making. Go figure.

Though she's entirely tube fed, Zoe's recently discovered that she absolutely LOVES crackers. Not to eat, but to suck and lick and taste. Her official first word is "Keh-Keh" (cracker) and she asks for them all the time. I mean, incessantly. First thing when she wakes up (at 5am) in the morning, and pretty much all day until she goes to bed. Crackers have supplanted the brief mommy obsession she had--which is both a relief and a "Hey.....! Really...?"


Really.

Jeff and I are good, so good. To be sure we're dealing a bit with cabin fever, but that's a sickness we are happy to manage. I'm back to learning Braille after a long hiatus; Jeff's teaching himself Beatles tunes on the piano. This Christmas is very low-key--no presents, no decorations, no fuss. We will spend time with family both from in and out of town, so the gathering of the Newton-Cormey-Rapp-Nielsen-Bell-Connor clans will be a good (and loud) time.

Zoe will add to it with her screams no doubt--she's been perfecting them and I'm looking forward to showing them off. Oh, and her cuteness, of course.

Abundant Gratitude

Wow. Here it is. The most meaningful Thanksgiving of my life thus far. My heart bursts with gratitude that this hell we have toured, this valley of shadow we've traversed has opened up to such a glorious mountain top.

Our girl lives! She thrives.

I'm grateful, so grateful.

Thank you for sharing this journey with us, for sending comforting and supportive emails and comments, for lifting us up, for visiting, for holding us as we cried, for rallying the troops, for bringing food, for grocery shopping, for sending money, for encouraging me to write when I've been silent---thank you for loving us.

I'm grateful for my rock of a husband who is the strongest man I know. Ever present, ever nurturing. What a lucky, lucky woman I am.

I'm grateful for SCCA, for Seattle Children's Hospital and all of the wonderful people who work there, for transplant technology, for modern medicine, for living in Seattle where we had access to world class health care, for chemotherapy (and I NEVER thought I'd say that), for very, very smart people.

And mostly, I am grateful, so deeply thankful for an anonymous woman who gave of her very genetic substance to an unknown baby girl in the knowledge that she could possibly save a life.

I'm grateful for her social conscience that had her sign up for the registry, for her sense of responsibility that had her step forward when identified as a match, and for her tenacity to follow through with a procedure that wasn't very pleasant--all in the spirit of possibly being able to make a difference.

My heart catches every time I think of it; the magnitude of her gift is so overwhelming.


Yippee! This crazy existence we call Life is such a ride--and it is far from over yet. But at this scenic overlook we've paused at to catch our breath and stretch our legs it's looking pretty damn gorgeous.

E ticket rides don't have nothin' on this.