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.

Hoo-Boy!

Just a quick post to say that, if I weren't feeling like warmed over death from a lovely little fever today, I'd write more about our looooooong day.

Back to SCCA tomorrow, and I will have even more to tell after that. Tomorrow we meet with the doc who will answer the meaty questions we have (today was a meeting with a nurse, nutritionist, physician's assistant, as well as a blood draw that made me want to bang my head against the wall--but more on that later). Anyway, the nitty gritty will start tomorrow.

As for whether Zoe's cold will delay the start of the transplant, we have yet to learn. They aspirated her nose and will see what sort of nasties are in there.

How bizarre, Jeff's fart machine just went off on it's own accord--and no one pressed the button to activate it. My tired giggles are echoing through my aching, congested and feverish head.

What a surreal day.

After the Storm

The Seattle Snowpocalypse has finally subsided and the streets are dissolving into a slushy slurry of snow-mixed mud. It's amazing how the city can almost completely shut down with the tiniest bit of snow, let alone after the dumping we've gotten in the last couple weeks. We hadn't planned on taking time off for the holidays, but we were forced to--only a handful of clients wanted to try their hand at driving through snow to our house.

Our big excitement lately that Jeff didn't mention in the previous post was some swelling in Zoe's scalp that appeared all of the sudden over the spot in her skull where she had had the most trauma during the surgery. The quarter-sized bump caught my eye 3 weeks ago over her right ear. A call to Cunningham had Jeff taking her in the next day for a viewing and CT scan. The verdict was that they weren't acutely worried, but that we should keep our eye on it.

It doubled in size over the next week and a half. More conversations with the team had them surmising that she had likely "sprung a leak" of cerebral spinal fluid at that location, but that, since her mood was not altered, since there was no accompanying fever, no red inflammation, there was really nothing to be done. It existed in an enclosed system--and, opening her up for any patchwork would only serve to push off the BMT.

Even though the doctors' and nurses' words on the subject were pragmatic, we couldn't help but watch our minds wrestle with this new worry. A leak! Ack! To help us feel better about it neurosurgery scheduled us for another check-up for what was this last Friday the 26th. Somewhere in the middle of the night of Sunday the 21st, Zoe's swelling deflated by 80%. In the morning it was the smallest hint of a bump. The check up on Friday was basically a "yep, probably a small leak--and nope, nothing to interfere with the scheduled BMT."

Phew! And....now she's sick.

It seems like we've already traversed this path. Our efforts to keep her cloistered haven't prevented what seems inevitable in cold and flu season. In fact, we've all got the crud. Of the three of us, Zoe seems the most chipper. Tomorrow at our first SCCA appointment we'll find out what effect this latest development has on her BMT start date.

We are learning to laugh. Well, at least chuckle -- if a little mirthlessly -- at the ongoing bumps in the road. One thing after another. Our minds swing on a jungle-gym of worry, from one rung to the next--all with no real purpose other than to give us the illusion of having any control at all in this mind bogglingly immense experience. We've been telling ourselves to get used to it, that it will likely be a constant stream of perils of varying degrees.

How can it not be? A risky treatment for a fatal disorder. It's all about life and death and becoming accustomed to walking the line between the two. Some days we walk more gracefully than others.

Christmas was a very mellow day for us. Our Postal Service Champions got hit pretty hard by this terrible weather we had. We got a call a couple days before Christmas from the post office saying that, due to the craziness of trying to deal with the snow, no time had been had for shopping for us; they would do it after the holiday rush and thaw.

Carol, our carrier that's been subbing for Robin, showed up on our doorstep later that day with a couple gifts for Zoe and a grocery bag of drinks and sweets. She just wanted to be sure that we had a few goodies for Christmas! Again--the kindness and care being sent our way astounds and humbles me. She had been stuck in a ditch for 4 1/2 hours the day before, the snow was still bad the day we saw her, and yet she stuck her neck out to help make our Christmas special.

Holiday spirit on our doorstep, incarnate.

Of the two presents delivered, one contained a couple of blankets made especially for Zoe by the wife of one of the postal workers. Designed with a blind baby in mind, they were soft and fuzzy on one side and silky smooth on the other. One was large enough to cover her in bed, the other, small enough for her to hold and hug. So sweet!

Tomorrow, finally, are the first of three, maybe four preparation appointments with Seattle Cancer Care Alliance. Funny how that name now rolls off the tongue without the angst and trauma it initially produced in me when we first realized we had to work with them. So much fear of the "Mythic Bone Marrow Transplant"--but it's the only thing that can cure her. And, as her abdomen swells before our eyes from an ever-enlarging spleen trying to do the work of her diminishing bone marrow, we are anxious to get started. And, we are grateful that there is even hope of a cure.

So, folks, let's get 'er done!

Weather outside is frightful

Last night I measured the snowfall in our back yard at 10 1/2 inches.

No more snow today as the temperature finally went above freezing.

The car is shoveled out in anticipation of driving to the SCCA on Tuesday morning for our appointments. What I think of as "The beginning".

Phone rings this afternoon: it's the SCCA telling us that the appointments have to move. They say that with the weather messing up staffing, Christmas break this week, and the fact the Zoe will not need a lot of work up, next week will work for them better.

Ughh!!!

So "The beginning" will start on Tuesday 12/30. With follow-up appointments the next day.

This delay will not effect the dates for transplant and "conditioning".

Meanwhile Zoe continues to grow and heal from the surgery. She delights us each day, and night too!! Still not more than 3-4 hours of sleep at a time. Sometimes less.

Check the "Watch Zoe on YouTube" link and watch the newest video called "Zoe's Eyelashes".

More details as they come.

Welcome to Holland

Last Friday our friend Jon hosted a "FUNdraiser" for us organized through the Lostsahelpinghands website. He called it "Stand and Deliver." The idea was that attendees would stand up and perform anything they would like, while the rest of the room threw money into a hat in appreciation. Cookies and wine were served. It was an altogether civilized busking experience.

Some people sang, others played the piano, one hula-hooped for five minutes (while wagers on how long he could last grew), and two people turned the reading of tame books into racy experiences.

Who knew that a classic Dick and Jane book, and a description of a woodpecker's tongue in a naturalist encyclopedia could be so....so naughty?

Also shared was a piece called "Welcome to Holland." Read aloud by our friend Susanne, she had acquired it while in school to become a physical therapist. It created a tear-fest, so I just had to share it with you here.

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"Welcome to Holland"
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability--to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip--to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
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Dang it. Still makes me bawl.

News

SCCA called today with the latest update on Zoe's transplant.

So, we are to go to SCCA for her first pre-transplant appointments on December 23rd and 24th. If we were from out of the area they would have pushed those first two appointments to after Christmas since people don't like traveling around then. The 23rd she will undergo many evaluation procedures--EKG, scans, etc., etc. The 24th we will meet with her doctor to go through the planning process. Likely there will be a 3rd, as of yet un-scheduled meeting prior to what they are currently projecting as the beginning of her "conditioning", the chemotherapy regimen, on January 11th or 12th.

They say it will be eight days of chemo for her, a day of rest, then the bone marrow transplant on the tenth day--January 20th or 21st. The chemo and transplant dates are tentative--more firm ones will reveal themselves as the process gets hammered down.

It's a mighty ball that they are starting to roll--I have to remember this when I get impatient that they aren't moving fast enough. There are many things to coordinate--not the least is the donor's schedule. As it's past the holidays, I'm hoping that mid-January might be seen by her as a perfect time for a sore hip.

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Zoe continues to do fabulously. It seems like the surgery has loosened her brain up enough for her to have a personality explosion of sorts. She's the same as she used to be, but, for those of you who grew up reading Homer Price by Robert McCloskey, it's as though she's been sprinkled with a liberal dose of "Ever-So-Much-More-So." She's quite a character who helpfully makes us laugh every day.

She seems to have a lot more energy as well. Especially in the night from about 10pm to 5am. I am learning to accept bags under my eyes as a permanent feature.

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For those of you who haven't checked the You Tube link in awhile, I forgot to mention that I recently posted three clips of Zoe in the hospital after her surgery.

Peace!

Knights in Mail

Sorry for the silence in the last week--I took a break from posting.

We have had two hospital visits since I last wrote, one on Monday, November 24th, and one this last Monday the 1st. The blood draws on both of those days showed a continued downward trend in her WBC's and C reactive protein. The downward push on both of those numbers are an assurance that she does not have a hidden infection. Phew! and double that.

She had a CT scan on the 24th that showed her head swelling was pretty well resolved. The only note of concern was how her ventricles looked a little large. The neurosurgery nurse noted that it could be due to the brain not being able to drain the fluid in those spaces. We were told to beware of signs of extreme irritability in Zoe, coupled with vomiting. Greeeeaaaaaaat.

But, as of a week later, she was still fine, and our visit with Cunningham this Monday put that worry to rest. He shook his head dismissively about it being an issue. He said he's seen the ventricles expand in size many times in a child after surgery such as Zoe's. And, upon viewing her lab numbers, he was able allay any lingering concerns about her having osteomyelitis. Both worries were put to rest by the fact that she is doing so well: her animation and good spirits would not be so evident were she harboring infection or suffering from an inability to drain her brain (so to speak).

Both Cunningham's and Hopper's assessment of her yesterday led them both to recommend that her BMT be put into motion. They felt that she would be fine to start 3 weeks from now. The thought makes me a little queasy with nervousness. It needs to happen ASAP, that is clear. But, what could cure her could also kill her, so it's a strange event to welcome.

Whether SCCA will be ready for her to start in 3 weeks is another issue. They need to lock in her donor. As I hope I mentioned before, Zoe does have a donor lined up. What we know is that she is a woman in her late 30's who lives in the US. She does have the right to say that her schedule doesn't allow for a certain start date. Three weeks from now is Christmas, so it would be understandable if she didn't want to undergo surgery at that time. But, it would be such a gift for Zoe should she be up for it.

Thank goodness for the kindness of strangers.

And, on that subject, we were told of the most amazing blessing that is coming our way courtesy of the local post office: this Christmas we are to be adopted by them. !!!!

Carol, the mail carrier, came to tell us this astonishing news today. See, we had struck up a friendship with our usual carrier Robin well over a year ago. When Zoe came he brought her origami art, and he and Jeff swapped origami know-how. He was always interested in what the latest Zoe developments were, and was very concerned when things for her started to take a scary turn. Then, we stopped seeing him--Carol had taken over his route. Inquiries revealed that Robin had messed himself up pretty badly in a running accident--he has been laid out on medical leave for awhile now.

Why this is important to tell you is that Carol said that it was Robin who recommended us as the family to adopt this year for Christmas. She said that originally they had wanted to adopt Robin, but that he was adamant that we needed it more than he. His reasoning was that he had a goodly amount of sick leave stockpiled and that his wife was still gainfully employed. Our being self employed and without sick leave convinced him we needed it more.

So Robin, bless him or drat him (for being too doggedly altruistic in his laid-up state), has won out and convinced his co-workers that we are the ones to be adopted. What that means is that they want us to give them a wish list of things we need, or even a few goodies we want, so they can put them under our tree for Christmas. And we weren't even going to do Christmas this year!

I've cried so many times today. The blessings we are graced with amid our darkest times are truly awe inspiring. Mail carriers! Our blue-clad knights in shining armor. You never know where a champion will come from.