After a long day

We checked in this morning at 11am so that the HemOnc (hematology-Oncology) unit could infuse Zoe with platelets and hydrate her prior to her 3:30 surgery. A lab test on Monday had shown that her platelet counts were quite low (unsurprising for an osteopetrotic baby), necessitating the transfusion. As she was not allowed to have food or liquids past 10:30 am, they wanted to keep her hydrated intravenously.

It all went quite smoothly; the biggest stress was dealing for hours with one very hungry and unhappy baby. The actual procedure was only an hour, but we didn't leave the hospital until 7pm--a full 8 hour day.



Her line looks good, her belly is now full, and she's snoring in the little bed behind me.

While in the hospital we got a tour of the SCCA unit at Seattle Children's. It is isolated from the rest of the floor with doors and big signs that scream "IF YOU ARE SICK, DO NOT ENTER!" It has its own HEPA filtration system separate from the rest of the hospital's (something I had been wondering about. It has play areas, TV areas, a teen room, family room, and lots of bikes and big wheels to ride around the hallways. Jeff, of course, wanted to know if he could ride the bikes too. We saw a small unoccupied room as an example of what we might be staying in; they tell us that the big ones are currently full, but that we will likely be able to move into a big one later.

It turns out that we will be able to have visitors while in the SCCA unit, as long as they are well. I would say, no small kids though--it's too tortuous for a non-patient child to understand that they just can't play on all the great (and sanitized) toys scattered all around.
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We got the transcription notes back from last week's big meeting, but I just haven't even opened them yet. I probably won't revise that last long post as promised. Too much.

I found out why they preferred bone marrow over stem cell donation: reduced risk of GVHD with actual marrow donation. Donor services said that they did send the donor the message that the docs would much prefer marrow, but the word back from the donor was "absolutely not," she was only willing to donate stem cells (stem cell donation is through blood pheresis , marrow donation is through surgery done under general anesthesia).

I spent a bit of time being really frustrated with this--why would someone sign up for donation and not be willing to go all the way?

Meeting with a donor services person put it into perspective for us. We have a 10/10 match--this is wonderful. None of the other osteopetrosis transplants at SCCA have had a 10/10 match. Zoe has a very unique and unusual set of genetic encoding--so it's great that there is even such a good match. A 10/10 match takes precedence over the type of product, so a 10/10 stem cell donation is seen as preferable to a 9/10 marrow donation. The refusal to donate marrow may be based on medical reasons (an allergy to anesthesia for example) over personal preference--but privacy laws will not let us know why.

And, the donor still has quite an ordeal to commit to donating stem cells: she has to have daily shots for 5 days prior to the donation that will boost her stem cells. These shots will make her experience flu-like symptoms and she must be monitored for 2 hours after every shot. Some employers don't give benefits for marrow or stem cell donation procedures, so she may be doing this on vacation leave or her own dime as far as income loss goes.

She has signed the consent for the procedure, so that says that she is committed. I asked what the follow-through rate was for donors, and we were told it was surprisingly high. Apparently, those identified as matches who go through all the preliminary testing are very well aware of the important role they play.

So, keep our anonymous donor in your thoughts and prayers so that she is supported in her process and able to complete the donation successfully, without harm to herself or livelihood.
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We learned how to care for Zoe's Hickman line yesterday (only yesterday?? seems like ages ago). We are going to become her dedicated nursing staff. Jeff already gives her twice daily injections of blood thinner and three times daily doses of medicine. In the hospital these duties will be taken over by the nursing staff, but when we go home again, there will be much to do for our girl. We are told to expect her to still be on an IV when discharged, and she will need all sorts of maintenance while we wait to see how successful things are in the long run.

But I get ahead of myself. We still have to get through the short run.

Tomorrow we return to SCCA for something called a "data review", her dressing will get changed, lines flushed, she will get a blood draw (through the line; no more pokes), and we will take some sort of class that I have forgotten what it's about. The lab draw got added on today as we were told that SCCA received a sample of the "donor product", so I guess they are going to do some more matching or cross examining or such.

My mind loses the details when it's tired.

By the way, while we do check-in to the hospital on Saturday, she will only be getting Dilantin that day. As one of the chemo drugs has the possibility of causing seizures, they administer Dilantin as a preventative measure. Sunday the chemo will start.
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I've made friends with the aunt of another little girl with osteopetrosis who is in the UK. I found her by doing a search on YouTube using the word "osteopetrosis". Check out her link. As the baby, Alishba, is Asian, there was no donor match to be found. Two of her aunt's videos are entreaties for Asian people to become donors. Alishba has since been transplanted with a 5/6 cord blood match. Her transplant process started shortly after her first birthday back in the end of November. So far, she is doing well. Her videos remind me so much of Zoe--all sweetness.
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Last Friday we experienced our Christmas-After-Christmas, sponsored by our good postal workers at the Bitterlake Station, Seattle. Carol, Jody and Dan showed up bearing several gifts all beautifully wrapped. Many tears and many smiles--for everyone. We were so touched by their generosity. Many things they gave us we needed; we sent those things we could not use on to the women's shelter and food bank so as to pay the blessings forward.

Getting to know the wonderful people of our local post office makes my connection to our neighborhood and community feel stronger. It's too easy to feel isolated, especially in the midst of a medical saga; everything that chips away at that isolation helps to contribute to good medicine for us.

So, on that subject, I--we--thank all of you who check in to this blog regularly, those who leave comments, send us email and cards, and call us. You are an important part of our process: you also combat our isolation and help our sanity. If we don't always respond, know that your messages are so very important--and very needed.