We are headed to Milwaukee! After three solid weeks of improving counts the docs say we can get out of Dodge and chill out for a few weeks. We are now in the “wait and see/will it stick” phase. Jila will still need blood tests twice a week, transfusions, medications, etc. but she is solidly, strongly improving. As we pack up and move out of Ronald McDonald House and hit the road tomorrow morning my heart and thoughts will be with the other kids here and their families who are hoping and praying for the same. Again, Jila is not out of the woods (and if a transplant turns out to be needed down the road, we still don’t have a match), but today is undoubtedly great news.#swabforjila www.marrow.org
Jila’s blood counts are on the rise again! After a couple days downward they took a big jump again today, and we are getting discharged, whoo! We’ll be moving across the street to the Ronald McDonald House where I’ve had a room for the past week. Now that Jila will be joining me for the first time, they will give us a new “isolation” suite that is set up for immunocompromised kids. Unlike families in regular rooms, we’ll be allowed to eat in our room since it wouldn’t be safe for Jila to eat in the main dining areas.
The logistics of all of this have been rather mind-boggling, and I’m not exactly sure how we’re going to manage this next phase with Jila and I both at Ronald McDonald House. (Not complaining — I’m thrilled! But just thinking out loud about how to manage this.) The last time Jila was discharged (after the ATG treatment) her counts were so low they recommended we stay in our own hotel room with a kitchen, rather than Ronald McDonald House which has a shared kitchen. So we got a room at the Residence Inn Marriott and my awesome dad came to stay with us so I could grocery shop, pick up prescriptions, etc. (Also my brother-in-law Tim has been a huge help in picking up groceries and prescriptions during the times I’ve been on my own.) That was great — until we got readmitted two weeks ago to the hospital with expectations that a bone marrow transplant was imminent, meaning a likely couple months or more in the hospital.
Rather than keep paying for our hotel room (which also was a 25 minute drive away), we decided my dad would head back to Milwaukee and I got on a waiting list for a room at the Ronald McDonald House which is across the street from the hospital. Turtle and Jasper came out right away (again, thinking BMT was imminent) and after a few days trading off with Turtle staying at the hospital and me staying with Jasper at the Residence Inn, a room opened up at the RMHouse. So we moved into that last Thursday. When Turtle and Jasper went back to Albuquerque on Sunday I also returned the rental car which I didn’t really need anymore. So as of Sunday I’ve been flying solo.
Having a room at RMHouse has been a godsend on many levels. I can pop over for brief periods to do laundry, and best of all, eat. When I got the tour of the place I was told that volunteers made three meals a day, and I thought to myself, “Eh, I’ll make my own meals, no problem.” Well other than the occasional bowl of yogurt, I’ve totally not cooked at all. It’s incredible and moving and heartwarming and just plain nourishing to be there and witness what people do for each other in a time of need. Not having to spend energy on making meals for myself is something I didn’t realize would be such a blessing, but it is a huge one for which I’m incredibly thankful.
The tricky part will be figuring out how to get groceries so I can cook for Jila. Our doctor said even though her counts are better and she’s safer, he’d still rather that I prepare her food and that she should avoid buffets, which is how meals are served at RMHouse. RMHouse offers shuttles to grocery stores, but I can’t leave her alone (she’s 7 remember). I already have some groceries there (each family gets a section of the refrigerator and a locked cabinet) but I’ll need to replenish soon. I may be calling family later today to see if they might be able to come help again. (Heads up Kay and Reza!)
The Medical Situation
We have been back in the hospital for just over two weeks, since the day her distressing bone marrow biopsy results came back and the doctors told us we’d imminently have to start the process of bone marrow transplant. Then, two days after that, her counts started to rise. After several days of strong improvement the docs said it was a great sign that she had some healthy stem cells in her marrow that were starting to produce. The big question was (and is) whether those cells can keep it up and reproduce so that Jila once again can have a healthy immune system, not to mention other important things like platelets to control bleeding. As of today things are looking good.
After ATG therapy (or a bone marrow transplant for that matter), the first cells that are supposed to come back are white blood cells (WBCs) and a specific type of WBC called neutrophils, which are important for basic safety because they prevent bacterial and fungal infections, including life-threatening ones. Jila’s neutrophil count (called ANC, for absolute neutrophil count) was abysmally low before her turnaround two weeks ago, which is the main reason we’ve been back in the hospital. Now that her WBC and ANC counts have improved so much there’s less need for us to be in the filtered air and germ-controlled environment of the hospital.
We’ve been on the bone marrow transplant (BMT) unit which has considerably stricter rules/controls than “regular” hospital units. For example, parents are not allowed to eat or drink in patients’ rooms, nor use the bathrooms in the room; you have to be buzzed into the unit and wash hands immediately upon entering; they take the temperature of young children visitors (like Jasper) to prevent them coming in sick, etc.
Jila is still quite susceptible to viruses, so she’s not supposed to spend a lot of time in public for at least a couple months, and when she does she’ll have to wear a mask.
Another thing that probably won’t recover for a while is her platelet count. Platelets are the type of blood cell that help you stop bleeding by promoting clotting. They are one of the last types of cells to recover after ATG, chemo or bone marrow transplants. She has needed platelet transfusions about every 4-5 days since late April, and will likely continue to need them for at least a while. When she starts to maintain her platelet count and produce her own, that will be a great sign that the ATG treatment has really truly worked. I don’t even really know when to hope for that; I haven’t asked as I’ve just been focused on the immediate next milestone which is improvement in WBC and ANC.
I’m so incredibly happy for today’s good news. 🙂
Based on the genetic testing done on my daughter Jila and her extended family, it appears that the tricky part of her HLA typing comes from my dad Reza Pakroo who is Persian (aka Iranian; same diff), making Jila 1/4 Persian. Jila’s dad Turtle O’Toole is pretty much fully Irish. Ethnic/racial backgrounds make a big difference in finding a match, so if you are Irish-Persian or know any Irish-Persian folks, would you please consider doing a cheek swab test and joining the Be The Match bone marrow donor registry in the US, or an international registry?