All Settled In: Day -9

We are back at our home away from home: Seattle Children's.

Yesterday we checked in at 4:30 and were shown the tiniest room that I believe exists at Children's. After a myriad of vitals assessing Zoe was given Dilantin at 9pm, and a blood transfusion at midnight. Jeff and I agreed that I would stay with Zoe the first night; Jeff headed home for bed at about 11pm.

Zoe did not, could not fall asleep at all. Finally, after hours of Zoe's fussing, the night nurse told me at 4:30 am that the Dilantin infusion may have had something to do with the wakefulness (now she told me!), and offered to give her a dose of Benadryl to help her fall asleep. As I had not slept a wink along with Zoe, I have to admit I jumped at the offer of a sleep-aid for the tyke. I, now a basket case before the first 24 hrs in the hospital, had called Jeff at 4am to come spell me so that I could sleep. He came, I went home for a few hours, Zoe and I both caught up on some shut-eye.

Things are not quite as glum now. Amazing how sleep can improve one's outlook.

Zoe has had one dose of the Busulfan this morning, and is currently getting infused with her second dose. Busulfan is a particularly nasty chemotherapy drug that only gets used in rare cases such as bone marrow and stem cell transplants. There is a very small difference between an ineffective dose and a dose amount that will completely kill off one's bone marrow. Dreadful stuff, but I try to remember it's a necessary part of her cure.

Jeff has to do a lot more of the baby comforting for now; Zoe has finally figured out that she misses mama's milk and often gets quite upset when she hears me or is held by me. Oh baby!

We are in "isolation" due to the corona virus that Zoe has. This adds an even more complicated spin to an already challenging situation. Due to being in isolation we are not allowed to go to the common areas such as the family and nourishment rooms in the SCCA ward. We have to rely on the nurse to bring us food we have in the refrigerator--and the food that is brought to our room is not allowed to go back to the fridge as it is seen as "contaminated" and may not comingle with food from other rooms.

So, on that note, if you are signed up to bring food to us (and thank you, by the way), we can't put leftovers in the fridge. Individually wrapped servings are fine: they can go directly in the common fridge and be brought to our room as we need them.

We asked how/if the lingering of the corona virus would affect Zoe when she has no immune system. Again, it's not seen as one of the deadly ones. They expect that viruses will show up when she is immunocompromised. As they already know she has a corona virus, they will know to specifically monitor for it, as well as stay on the lookout for others.
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In the title of this post you might have noticed "Day -9". How the counting for stem cell and bone marrow transplants works is that transplant day is considered "Day 0". The conditioning days leading up to Day 0 are negative days. So, we are at nine days prior to her stem cell infusion.

Going in on Sunday, but Hair Today

We were told that actually Zoe won't be checking in to the hospital until 4pm on Sunday. Turns out they need extra time preparing the stem cells before they are infused into Zoe. The donor will keep to the same schedule.

The next day, Thursday, after Zoe's line placement and ER visit we went back to SCCA for a data review, dressing change, lab draw and infusion.

At the data review we met yet another doctor (lord if I can't remember his name) who ran us through things to expect throughout the process. Salient points: one day of Dilantin, 8 days of chemo, 1 day of rest, stem cell infusion. While stem cells generally take about 14 days to engraft, they expect osteopetrotic babies to take up to 21 days. After engraftment then it's a waiting game for the WBC levels to come back up to acceptable levels.

The Doc said that complications are an expected part of the process. It will involve many, many fires--big and little--to put out. The good news is that babies tend to do a lot better than adults with transplant. Bad news includes things like the chemo making Zoe sterile, as well as heightening her risk of contracting leukemia, lymphoma or some other cancer down the line--in about 15 years.

Well, there's a lot more bad news than that, but I just don't really want to think about it right now.

The lab draw and infusion were heavenly, compared to what they were like prior to the Hickman being put in. She actually slept through them.
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So, about the hair. It's gone. Mine, that is--and Jeff's too.

I felt like doing something drastic, so I shaved it off (well, Jeff actually did) and I am sending it to "Locks of Love" to be made into a wig for a child cancer patient.

Our friend Tyler donated his hair as well, and we had quite the fun shaving party--click here to see some pics. Also, check the YouTube link--I'll post a video there.

Extreme times call for extreme measures--within reason!

Back again

It's 11:15pm and we are hanging out in the ER.

After a two hour nap, Zoe woke up with blood soaked through her jammies. The area around the little disk on her chest (see pics on the last post) was covered with a pool of blood underneath the dressing and was leaking out rather determinedly.

We paged the on-call thoracic surgeon, and he agreed that we should go to the ER to have it looked at and dealt with.

So far, those who have looked at her agree that the bleeding is due to the combination of her low platelet count and the blood thinners she's on.

Her dressing has been changed and we are waiting for discharge.

When driving here we mused that this would likely be the first of many trips to the ER.

Transplant experience is usually never straight forward.

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.

More Birthday Shots

I do have details to update, as we have been going at it with the meetings and appointments the last couple days at SCCA. But, it's late, and I will have time tomorrow to catch you up while we wait during Zoe's central line placement surgery.

We didn't do really anything special for Zoe's first birthday--the need to avoid germs and our crazy schedule preempted a proper party for our girl (thankfully she's too young to remember!) We did buy her a Trophy cupcake, and Jeff's brother Martin swung by in time to help us sing to her and give Zoe her first taste of sugar.

Luckily, I don't think she's a fan.

The girl's had a rough year, but I don't think she was as bothered by it as much as we were. So much joy, so much terror. All so, so worth it.

(P.S. Check the YouTube link for some more Zoe videos!)

Happy Birthday Zoe!!!

Milking, Part 3

Zoe will be weaned by next Saturday. Come to find out after all the gyrations on this subject that SCCA flat-out forbids nursing during transplant. After meeting with one of the oncologists yesterday, Dr. Delaney, I understand more the rationale behind the mandate.

Dr. Delaney confirmed that it was not a proven risk, and she certainly knew where I was coming from as a mother who had nursed her own two children. But she made a couple very convincing arguments that gave us pause:

1. Osteopetrosis is a particularly difficult disorder to transplant for. The reduced bone marrow space makes engraftment more difficult. If engraftment is successful, then the next, even bigger concern is Graft Versus Host Disease (GVHD). While maternal lymphocyte transmission risk is small during breastfeeding, it's still possible. Even one errant T-cell that makes its way from my milk into Zoe's body (beyond the GI tract) could wreak enough havoc to either interfere with engraftment or complicate GVHD.
2. SCCA oncologists have witnessed transplant failures they believe were directly linked to the patient being breastfed during the process. When asked why this had not been written about, her response was that--understandably-- there are so many aspects yet to be written about in this field. It comes down to the researchers and docs directly involved having enough time to do so.

Certainly, there are many anecdotal stories of children flying through the transplant process without a major problem while continuing to nurse. But, Zoe seems to be a more tenuous case. I've reached the point of admitting that I don't know enough on the subject to justify my continued obstinance. She will have had a full year of nursing--and, she now takes a bottle of goat milk with as much gusto as the breast. Both Jeff and I are resigned that weaning must be done.

And, it still really sucks.

I did inquire about resuming the nursing on the other side of the process. I had thought to pump three times a day to maintain at least a small milk supply for her to enjoy when the go-ahead was given. But, the word was that it would be six months MINIMUM before she would be allowed to nurse again, and much more likely, at least a year. I am devoted to my girl, but the prospect of pumping for a year is a deal killer. Even if I were willing, there's no guarantee that she'd even accept the breast after that long off of it.

So, I've got one more week of this unique experience that mothers get to have with their babies. And I am soaking up every last second of it.

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We didn't really realize how much of the process would start before she was admitted on the 10th, but now we see that the big ball has already been set in determined motion. Tuesday and Wednesday were long days at SCCA; next Monday and Tuesday will be just as long with the meetings and classes we need to attend on the various subjects involving home care for a transplant patient. Wednesday will be Zoe's surgery to put in her central line. Thursday they want us to come in for who-knows-what, but something important, I'm sure. Then, Zoe will be admitted on Saturday the 10th.

Which reminds me: the results of Zoe's nasal aspiration came back positive for a "corona virus." While it could prove to be a nuisance, it's not a virus considered too dangerous to continue with the current schedule. Provided that she continues to improve, she should still be good to go on the 10th.

We found out some more details on the donor front--mixed things that don't necessarily comfort me on the whole. The good news is that she has a donor; some 30% of patients don't have good matches. However, those that do usually have around 100 to choose from. Zoe had 3. Of those 3, only one responded--the 39 year old woman we mentioned prior.

As great as it is that the woman is a 10 out of 10 match, there are a couple drawbacks. Number one, she wasn't willing to donate marrow, but opted instead for donating stem cells. While not the end of the world, it's not the first choice for what the doctors wanted for Zoe. Stem cells can still definitely work--and the good news there is that with stem cells they will know more quickly whether engraftment happens as stem cells engraft faster than bone marrow. I am realizing that I don't remember why the doctors' first choice was marrow over stem cells, but that was what they had originally told us.

The other drawback is that transplants with female donors have a higher rate of failure than those with male donors. It really has more to do with women who have had children, rather than the gender alone. Mothers produce more antibodies with each child they bear, which makes GVHD more possible. We don't know if Zoe's donor has had children, but, given her age, it's highly likely.

Again, Zoe's match is still pretty damn great, but I gathered that they would have done some more poking around for options if it weren't for the fact that insurance limits how much can be spent on the search process.

Given the scenario that these donor cells fail to engraft, Delaney said that cord blood is definitely a fine alternative for a back-up plan. (Good to know there is a back-up!) She said that, in fact, all of their recent osteopetrosis patients have been transplanted with mismatched cord blood as there were no good donor matches to be had.

Again, their success rate with osteopetrosis is 50% with unrelated donors, but she said to keep in mind that this number goes way back to 1981 with their first osteopetrosis patient, and the technology has improved exponentially since then. They have treated 7 osteopetrosis patients total--as opposed to thousands of leukemia patients. And, remember, SCCA is the place to go for tip top transplant services--the man himself who invented the procedure is based there.

Did I mention Zoe has an extremely rare disorder?

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This post has been a rambling, disjointed one. I am going off of memory as opposed to notes. There was a woman there jotting stuff down for us (provided by Seattle Children's), but I don't know when she'll be emailing me her notes. I'll likely tweak this entry when I do--so, if you're a stickler for facts, check back in a few days for the corrections.