Yesterday evening we received word that the courier carrying Ayelet’s donor cells caught an earlier flight and that the cells were now expected to arrive at 9pm instead of 2am which was a relief. A good surprise/omen.
Bubby, Zaide (poupko), and Zaide Zev were all in the room with us when the courrier arrived with the cells. It was all pretty cool/exciting. Ayelet definitely knew something was brewing with all the doctors and family around, not to mention the fantastic Elmo/cell-abration signs all over her room.
Finally we got word, the donor cells were here!!! See below for picture. We’ve never seen a more priceless/precious “mini-cooler” in our lives. It was humbling to think that a simple container could hold such valuable goods:
The overall process is 100% completely anti-climactic, but we were all abit emotional and joyous as we waited for the donor cells to be escorted into the room, and watched them hang the donor cells and connect them directly to Ayelet’s blood line. It was crazy watching the miracle of medicine happen right in front of your eyes.
Another good sign of the night: The infusion started at around 9pm and only took about an hour and half, after we were told it would take 3-4 hours, and she’d need finger pricks all night to check her glucose levels which we totally avoided.
On the flip side, they had to check Ayelet’s vitals every 15 minutes throughout the night so we are all pretty sleepy today, but Ayelet woke up and seems in great spirits. A new her, literally - we’re just waiting/praying to see that her body accepts the new cells.
The next couple of weeks are supposed to be the most difficult/painful as Ayelet essentially has no immune system. She will likely develop mucositis and we already see the begining signs of that (increased mucous, drooling, etc). Additionally, she is of course very susceptible to infection during this time and fevers are likely. Ideally, we would start to see signs of engraphment around day 14-21 but we have a long way to go until then. Ayelet is thnk Gd still in good spirits today. Thanks for all the love and support!
Ayelet posing with her donor’s cells:
Ayelet as they started the infusion: (she has no clue)
Thank you mister donor wherever you are! A photograph as they hung your cells to infuse. A miracle in the making:
Meaning today is the day we implant the donor cells, the bone marrow transplant. All it is is an IV of donor cells, no surgery, no anestesia.
Ayelet’s own bone marrow should be mostly wiped out from the past 2 weeks of chemo, so we hope the new cells will come in and take over.
The donor cells should be in route to Cncinnati Ohio to arrive tonight and we plan on doing the infusion at around 2AM this morning, God willing.
The major things we are praying for are 1) full engraftment (donor cells grow in ayelet and produce like her own bone marrow) 2) No graft vs host disease (ayelets body attacks the new cells). 3) No infections - with no immune system for a while, she cannot afford even a simple cold. This will take some time for us to know.
It will be a long road. From today, we now count 100 days until we can go home.
The first 30 days will be the hardest for Ayelet - so in the spirit of Ellul, the month of introspection that starts today, please do one more Good deed/ say one prayer/ give some charity in honor of our little brave gal.
Ayelet got her first and only dose of Melphalan today which is a very strong chemo. At first, she did not have any side effects and we all had a really nice/calm shabbos until about 6pm. At around 6pm, she started to have the symptoms they expect from this chemo, namely general discomfort and nausea. Ayelet was v cranky and puky but once the adavan kicked in she settled into a nice sleep. She could be feeling this way for the next few weeks but we’ll hope for the best.
In other news, she got this really cute/weird office thing on Friday that she is obsessed with. See here:
Ayelet has become quite the little helper to us, communicating in her own adorable way to make things happen - definitely a Hindy “get it done” influence.
When her machines beep, as they often do when meds are done or her multiple lines are twisted because daddy has walked in circles merchandising her room into something larger, Ayelet quickly points to the machine, screams “eh” and looks for the remote for us to push the nurse button, to get it resolved.
Hindy’s phone rings. Ayelet needs for us to give her phone, just so she can hand it to hindy directly. As soon as Hindy says Hi, she also now says hi. It’s hillarious. Mini-me.
Ayelet will pick up her shirt up, find her own G tube jetting out from her stomach and nicely extend it to the nurse when she brings over meds. Sorta like at a gas station - ‘Filler-up sir’.
The newest example: Because Chemo has started we have become obsessive in our efforts to let no new germs come in contact with Ayelet, we wipe down everything that touches or touched someone else prior to Ayelet touching. Phones are apparently the worst culprits, dirtier than toilets. So now Ayelet has become a self advocate - our little cleaning helper, calling for sani-wipes and copying mommy to wipe things down.
So apparently Ayelet’s obsession with straws (specifically dunkin donuts iced coffee orange straws with wrapper) is so five minutes ago compared to her new obsession with stickers. Ayelet has always been curious about stickers or as adults call them “medicine labels” and has such focused enjoyment with peeling them off things. Every medicine bottle she comes in contact with she jumps for 2 things 1) the cap to put on and off 2) the sticker label. We found adorable pizza scratch and sniff stickers in the hospital gift shop that are now attached to every piece of clothing and blanket Ayelet owns. Ayelet gets such instant gratification from the peeling process, but once that happens, they are worthless to her and she discards them everywhere. The hospital cleaning team is not happy.
This weekend she took her attachment to a new level.
You see, Bubbe began decorating the transplant room with awesome artistic bamboo decals. For us they bring real life to the room we will be in for at least the next month, but to Ayelet they are made for one purpose - to peel down. The ultimate sticker.
When finally one came down after hours of Ayelet staring at them, Ayelet jumped for it to feel its semi sticky back. Semi sticky was something she never experienced before -because it didnt hurt to remove from her hand but stuck as needed. Bliss. For the period of 24 hours, through 8 vital sign checks, 4 diaper changes, 1 GJ tube cleaning, 4 clothing changes, 2 baths, 2 blood draws, she did not let go of the bamboo decal.Not once. And when she did drop it she was heartbroken until it was back in her grasp.
When we finally got her to sleep I looked in her hand and she was literally still holding on to it like it was a winning bamboo lotto ticket. Now rolled into a little crumpled ball, stuck with lint, dust, spit etc - but it was hers. We kept sterilizing it but it somehow was consistently slimy and dirty. Oscar’s ditty “I love trash” came to mind.
When I tried to take it out of her hand, even in her sleep she kept holding it tight in her grasp. Obsessed I tell you. She is already staring at the wall for the next bamboo to lose it’s grip and fall into her clutches.
The good news is Ayelet’s lipase was down again today (a good indicator of the pancreatitis settling down) and we officially started the transplant prep!
Her prep begins with 5 days of CAMPATH (an immuno suppresant), 5 days of Fludarabine (a form of chemo) and one day of Melphalan (an intense chemo). There are a couple “days of rest” so in total the prep is 14 days and she will then Gd willing get the donor cells on August 30th. So today is officially day -14 and the day she gets her cells is called day “0” and then you count up from there.
So far Ayelet has not had any bad reactions to the CAMPATH, some kids can get fever and rashes. The bad news is I (hindy), woke up feeling terrible. I couldnt have worse timing since Margaret (our wonderful nanny) and Seth are both in NY! I wore a mask and gloves all day which Ayelet hated and bubbie came to the rescue. Amazingly, Ayelet cuddled with bubbie perfectly and is now sleeping. This will be the first time Ayelet is sleeping in the hospital without me or Seth and we are hoping that she will continue to do fine with bubs.
P.S. I booked Seth on a flight to cincy tomorrow night and Grandma Rita is also flying in to help Seth as he apparently broke (or fractured) his knee!
Luckily we found a new obsession for Ayelet and all of us: The Fishtank Channel. Yes, a tv channel in the hospital that serves as a relaxation method by playing hours of a fish tank footage. It’s awesome, with bubble sound background (though you sometimes question whether you have seen this episode before).
The bad news: Her lypase levels (+2000) and her crankiness levels (not laughing at daddy’s Dos Equis songs) point to the fact that the operations on Friday may have irritated her pancreas again. Waiting ultrasound results, but thankfully we caught it sooner than later. Just means the every 2 hour morphine will continue and food will have to stop until we ensure her pancreatitis is under control.
Benj and Sarah and Seth are pigging out on kosher cincy pizza as we watch EXTREME COUPONING and do online damage control as we postpone the bangitout tubav party until thursday, 8/18
Aunt Sarah and Uncle Benj Joffe arrived Friday afternoon after staying in Dayton Thursday night to see Benj’s Dad and Stepmother. What they arrived to was abit chaotic: Ayelet was just getting out of a routine surgery to replace her central blood line and convert her G-Tube to a GJ tube.
This routine surgery went from taking 45 minutes to taking 3 hours 45 minutes. Everything was OK, except Ayelet’s jittery parents, who were happy it all went well, just really slowly. Both procedures were successful.
Ayelet was a bit of a mess coming out of the anastesia and so were her parents. Hindy quickly jumped into Elliot’s car to spend shabbos at her sister Tamar/Elliot’s pad and Seth jumped into shabbos prep mode, cue spilling grease down leg. Sarah and Benj warmed up everything, as Ayelet needed all her surgery tape removed which was painful to say the least. We comforted the situation by gorging ourselves with the vast amounts of amazing gourmet shabbos foods from Cynthia Rosen and Naomi Landis. We were also getting new to Ayelet’s new room.
The rest of the shabbos events went like this: - Ayelet seemed in pain all night like a wounded bird. Morphine? yes please. - Seth banged his knee during night taking care of the wounded bird, and turned into a limping wounded hippo - The wounded bird and limping wounded hippo became snuggle buddies entertained by Benj’s dramatic reading of gossip magazines as if they were children’s books. We were all was entertained. - The kicker: Ayelet’s GJ tube fell out! (the one she just got). Seth sees weird tube on floor. Seth looks at Ayelet’s chest. Sees hole in chest, no tube. Seth/Sarah/Benj nearly faint, call hindy
- Ayelet is rushed back to surgery to get it put back in (by rushed we mean seth gets wheeled in a kid’s wheel chair (fat guy in a little chair) and ayelet has a fun ride and seemed to love being out of isolation and having her GJtube out - which definitely seemed to be what was bothering her. She is all smiles. Too bad we had to put it back in. - Hindy joins the fun, Ayelet is all fixed and her tube is back in - Ayelet needs all her wounds cleaned, bathed and tape removed. Theresa, our resident friendly PCA, gathers 4 nurses to do all 4 of Ayelet’s wounds at once - 1 hour of crying proceeded as we rip tape blood and dressings from all over her body, cleaned her, bathed and then put all new stuff back on.
Think passion of the christ, baby edition.
- We eat to comfort ourselves more. The family room is all deep breathes and deep bites.
- We finish shabbos with Ayelet finally getting rest, and we keep eating in the family room as we take in Shalosh Seudos and back to back episodes of Dance Moms, and a few really bad/good lifetime movies about a teenage girl who gets kidnapped in Paris and kills her roommate or something. We tried ‘hinting’ to other parents to change the channel but noone took the bait.
Nothing like good karma from my Wednesday night plane ride: After arriving at my seat on a packed Delta plane to Cincinnati I was broken when I saw my seatmate was a person quadruple my size. I am not all that small these days myself, and I was scared for my life. My dreams of relaxing across 2 seats and diving into the book i bought in the airport (Little bee) were body slammed, literally.
But somehow my idiocy saved me.
As the doors closed one final passenger got on and scrambled down the aisle stopping at our aisle- “Excuse me” surprised she was talking to me, mainly cause I couldnt see past my seatmate. “I think you are in my seat, 18B.”
"This is 18? I said digging for my crumpled ticket, as if Hashem had sent an angel to rescue me. "Man, I am in the wrong row!" i definitely said this with too much optimism, but when you’re literally thigh to thigh with someone you jump at an opportunity. As to why this person would want to take that seat when mine was one row up next to a tiny man with round glasses doing a crossword is beyond me, but I immediately got up, apologized profusely and began clearing all my stuff to move to my new oasis.
The flight attendant must have seen me get up after the seatbelt sign was on and was darting toward me as I was changing my row. But instead of the usual bitchy worn down flight attendant “sit down mister” I was shocked when a saintly Mary Poppins voice came out of this older stewardess (she was British in a Queen’s English sort of way): “Sir, would you mind sitting in the emergency row for me, we could use a kind helping hand” - and without a blink of an eye I was escorted to a row made for a king, or at least theleg room made for Lebron James. Salvation in the blink of an eye from mary poppins.
When that same stewardess came by asking for drinks and snacks and I paused when she asked if I wanted peanuts, pretzels - mainly because I was unsure kosher? are they milchig? oy! - she just smiled and said why not take all three, and proceeded to offer me a second diet coke. As she poured me my 2nd diet coke, she leaned in and I swear she said: “My goodness, I really am spoiling you this trip”
Dos Equis indeed! Ezy picked me up and we were off. A good start to a hopefully great weekend.