You Get What You Get

[...] . (By "we," I mean "me" and "every other mom I've talked to on the oncology ward" and "a lot of the dads on the oncology ward." I don't think that Guy feels he' [...]

[...] On Tuesday night, Guy and I checked Adi into the oncology ward for the start of his HR treatment. Adi had already told me that he wanted me to sleep in the [...]

[...] . This is EXCELLENT, EXCELLENT news. But now, let's back up a little. One of the kids on the oncology ward is a 12.5-year-old boy, Oree, who is awesome. When we first met Oree, he was in the middle of [...]

[...] Even the nurses cried. We knew these parents a little bit. We spent a shabbat with them on the oncology ward, and when we got to the ICU yesterday, there they were, in the room next to ours. "How [...]

[...] For many, many years, I identified myself as the mother of a child with special needs. That was foremost in how I thought about myself; if affected nearly every choice I made, [...]

[...] community's problems -- and pains -- become yours. For years, I've been part of the greater special needs blogging community, but for the most part, the blogs I read deal with kids who are like Adi in [...]

[...] to spend time with Adi on Friday mornings. The group came over to meet Adi, to hear about his special needs and leukemia, to ask questions, and so on. We introduced them to Adi and talked a little bit [...]

[...] cancer a week and a half after your kid is diagnosed with leukemia. When one of your kids has special needs, there's a part of you that thinks your other kids are somehow protected -- nothing bad can [...]

[...] I can try to tell you how much fun I had today on the outpatient ward and afterwards with Adi, but it probably won't make sense. We got to the hospital early, and [...]

[...] who had been battling cancer for three years. The day I met this boy, we were on the outpatient ward, and he was building with Legos. "Hey, is that R2D2?" I asked him, and he [...]

[...] while he was Adi's roommate, and once we were all discharged, we'd always say hi on the outpatient ward. Back when me met Oree, we already knew that he was going in for BMT, but they were still [...]

[...] stopped everything, and in the middle of all the chaos -- and it is pure CHAOS on the outpatient ward because of the renovations -- she said to me, "Here is what you need to do. You [...]

[...] means that based on the results they see, we’ll find out whether we need a bone marrow transplant. Of course, we won’t find out right away – it’ll take a week to [...]

[...] waiting, waiting, waiting, while the fate of our boy hangs in the balance. Will he need a bone marrow transplant? Only time will tell. [...]

[...] bone marrow results are here, because I'd really, really like to know if my kid needs a bone marrow transplant or not. We were SO CLOSE to going home. We just had to finish the Peg-Asp, and then check [...]

[...] I won't keep you in suspense -- I'll just go ahead and tell you that Adi DOES NOT NEED a bone marrow transplant. This is EXCELLENT, EXCELLENT news. But now, let's back up a little. One of the kids on [...]

[...] ;I'm more concerned about why you're not checking Adi's 36-hour MTX levels," I said to the on-call doc, pointing at Adi's chart, where "NOT NEEDED" was written next to the 36 hour check [...]

[...] Adi peed, and Guy told me that there were little tiny blood clots in the pee. We called the on-call doc -- and that was its own story, because no one answered and it took forever -- but the upshot [...]

[...] we'd have to be on a regular pediatric ward. By the time we got to bed, it was around 1am. The on-call doc on the ward came and asked a lot of questions, including: "What medications is he [...]

[...] So, the plan was to go home Wednesday morning or early afternoon, have a bone marrow biopsy on Thursday, and then start Adi's first HR treatment on Saturday night.  Has anyone [...]

[...] be admitted. If not, we'll go back home and wait. As I type this, Adi is in for his bone marrow biopsy -- but hey, these days, what's a little general anesthesia and a bone marrow biopsy [...]

[...] . We’re here until Wednesday, and then we head back home. On Thursday, Adi has a bone marrow biopsy – an important one. It’s Day 78, which means that based on the results [...]

[...] to treatment they way they wanted him to all along. And when they repeated his Day 78 bone marrow biopsy, we were sure that they were looking to confirm the worst. So today, when the doctor told [...]

[...] us we can go home later in the day -- how unexpected! But they tell us we'll be back in the outpatient clinic on Thursday for treatment, and checking in again Saturday night. We spend the rest of the [...]

[...] hall, is a 19-year-old boy named Max. He is dying. We used to see Max coming into the outpatient clinic for treatments. In fact, I remember one morning, a nurse asked him how he was feeling, [...]

[...] We were home, and it was great. And I got a little cocky. I mean, we went to the outpatient clinic, and I did a quick pass-through on the inpatient ward, and there were all these people I [...]

[...] morning some point next week, we're supposed to be admitted for the first of Adi's HR treatments (pending an increase in neutrophils, etc.). He'll be in the hospital for at least six [...]

[...] a week to 10 days. And while we’re waiting, what the heck, let’s start our HR treatments. HR treatments? Yes, well, those would be the series of three High Risk treatments that [...]

[...] . And his intrathecal went smoothly, and we officially kicked off the second block of HR treatments, which includes high-dose methotrexate (HDMTX). Now, methotrexate -- like all [...]

[...] tray and remind the nurse that Adi's Vanco needs to run over two hours so he doesn't have an allergic reaction. I sit next to Adi and put the bar on his bed up or down, according to his requests. I [...]

[...] Adi's blood pressure for at least two hours afterwards to make sure he doesn't have an allergic reaction. It took forever for the stupid little bag of poison to be delivered to the oncology ward, [...]

[...] doesn't mean home free. Adi will still be having intrathecals, he'll still be taking oral chemotherapy at home, and he'll still be in the clinic every two weeks for bloodwork. His stomach will [...]

[...] (the antibiotic we were taking for his umbilicus infection), and we're not taking 6MP (oral chemotherapy) in order to boost his counts. That's what a lot of the parents in Cancerland seem to write. [...]