Riding for Roses

I was reminded by my sister Tracy that I haven’t posted in a while and that my (seven at last count) loyal readers tend to begin to think things must be going wrong. Fear not, things are indeed going wrong. It is probably best to summarize and highlight the important bits. I should probably start with the famous words from the Hitchhiker’s Guide to the Galaxy: Don’t Panic

In the last two weeks:

• Rob has been diagnosed with gallstones and needs to have his gall bladder removed after we get back from vacation
• Spencer has almost been hospitalized a couple of times
• Spencer has actually been hospitalized once
• Spencer needed to have IV immunoglobulin to boost his immune system
• Spencer started kindergarten on time and in class
• Fundraising has paused
• Rachel and Rob are in a panic trying to prepare for an adult vacation
• Jacob is acquiring words and his molars are coming in

To set proper expectations: The scariest item on that list is Spencer starting school. Next is Jacob’s progression into toddler-hood. Third comes Spencer’s hospitalization. Fourth comes gallstones and it rapidly becomes non-fearful below that, though Rachel might argue our short notice trip to Jordan should be near the top of the list.

So we’ll cover that backwards.

Jacob is your basic 18 month old boy. He’s all “go” and the last couple of weeks his favorite word is “gackoh” – which is “cracker”. It has definitely supplanted “pappy” (pacifier) sometimes rendered as “happy” when he was very frustrated. It has even pushed aside “uh oh”. His vocabulary grows daily. In addition, he is a wild man. He has remarkably good proprioception most of the time. When he’s moving around Rachel’s wheelchair or under a table he always seems to know where his head, arms, and legs are without checking. He rarely bumps his head. This is especially noticeable to me because Spencer used to bump his head all the time at this age. However, when Jacob turns on “go” power (“go” being his number two word now), he seems to shut down all desire to check where he is. A couple of weeks ago, he said “bye bye” to Rachel as we were about to leave for day care and then turned around and without looking ran full speed into the edge of the door he was standing next to. By the time we got to day care he had a line of about 5 welts from his forehead down to his chin. No lasting problem, but for the entire day I was wondering if every person who saw him would call child protective services.

Rachel and I are planning, or more accurately having planned for us, a vacation to Jordan. We have a friend taking primary care of the boys, including power of attorney to handle medical stuff. We also have a slew of care providers filling gaps and as backup. More details as they come. With any luck, I’ll manage to buy a new camera before we go and post some blog entries, though perhaps not until we return.

We have mostly paused the Lance Armstrong Foundation fundraising campaign in preparation for a round two push to get $8500 more in donations to push Spencer over the $25,000 mark. We’ll approach the second half of our holiday card and email list, and also work on some low probability, but possibly high dollar, donors. Naturally, the web campaign will step up a bit as we approach the September 16 deadline. You can save being nagged or feeling guilty by taking a moment now to donate to support cancer survivors and Spencer’s personal Ride for the Roses.

Given the rest of what’s up, it was just fantastic to drop Spencer off on time and ready to go for the first day of Kindergarten. He had a great, albeit tiring, day. The highlights, at least the ones we could extract from him under intense interrogation, were art and recess.

One of the tests they run occasionally on Spencer’s blood is for IgG (Immunoglobulin G) which is a key antigen in helping fight infection and disease. This week, he was low and that means he needed an infusion. Likely that will repeat every 3-4 weeks until his body is recovered enough from the chemotherapy to generate enough IgG on its own. He was going to miss a day of school for the 5-6 hour infusion which was scheduled for August 18. Relative to IVIG the good news is that Spencer got the infusion on Monday while he was in the hospital. The bad news being that Sunday night he had a 102.3 fever and he had head and back pain, so he (finally, we’ve escaped a green unit visit since October 25 and are certainly overdue compared to other kids) needed to be briefly hospitalized. The cultures all came back negative so he probably was fighting a virus. The bad news for me is that I had a horrible pain in my abdomen most of the night. I’d been having enough pain to keep me awake some of the night Wednesday through Saturday. Sunday it was very bad, but I made it through the night without quite feeling bad enough to walk downstairs and across the connecting walkway to the ER. The good news is we got

I believe this was the third time in the last month or so that Spencer had fever problems. Last week, we came close to the limit (temp 100.9, limit 101.5) and Dr. Wells was on call. He said we could come in if it would make us feel better or it would be inconvenient to wait until 2 AM to come in. We opted for the inconvenience and Spencer’s fever went down and didn’t return.

Previously, his temperature had flirted with the limit for 1 hour and we didn’t call it in. We got yelled at the next day at the oncologist even though his temperature had not gone over the limit and he had felt fine. We are now trying to be good and call it in whenever he has a significant fever, even if it has not quite hit the limit, but especially if he feels bad (as he did on Sunday).

During our hospital stay (as soon as I suspected Spencer would be released on Monday), I made an appointment to see my doctor about my abdominal pain. Monday night, after we got home, I had very bad pain from about 11 PM to 4 AM until I finally fell asleep in the family room. The diagnosis was swift and annoying. Apparently, my symptoms were classic – notably a “Murphy’s sign” of pain during inspiration associated with palpation of the RUQ of the abdomen – translation: it hurt so much when the doctor pushed on my gall bladder while I was inhaling that it made me involuntarily stop inhaling. So, off I ran to the Austin Radiological Association for a “stat” ultrasound of my RUQ. Sure enough, gallstones. Then off to CPL for “stat” blood work which came back with confirming, but not frightening, results. The recommended treatment is to remove the offending gall bladder, and while I am waiting for surgery eat a very low fat, high fiber diet. I had figured that out all by myself on Monday and actually made it through Monday night without another attack. My gallstones aren’t too bad. My symptoms strongly suggest I don’t have complications. My blood work did not have the horrifically bad enzyme results that point to pancreatitis. I told the surgeon my tale of having a trip to Jordan and he felt that it would be reasonable to go ahead with the trip. So, off we are to Jordan with plans for me to not partake of the local cuisine quite as heartily as I might have otherwise, some pain meds in case I have a bad attack, a plan to evacuate me if it becomes acute, and a plan for surgery in early September. More on that as it happens.