WineGuy and I met with our rabbi this morning, and we set the date for Moose’s Bar Mitzvah: March 14, 2015. In the midst of cancer treatment, this is one point of light on which we can focus. Moose is excited to start learning, and we know he will master the task.
Today, we take a break from our medical telenovela to report on the latest with Wizard. What should be a lesson plan from Charms or Spells is more like one from Defense Against the Dark Arts . . . the Dark Arts being everything that Wizard says, does, or does not do.
A little background: Wizard is 17 years, 9 months. He will turn 18 in June 2014. Wizard is a senior at Zone High School, one of the top two high schools in our county. Wizard scored a 31 on the ACT without really trying and has cumulative SATs of about 1960 (out of 2400). Wizard’s unweighted GPA is about a 2.11; his weighted GPA is about a 2.8. His test scores are superior to his grades because he rarely does his homework; when he does homework, it’s usually a crappy job and turned in late. At the end of the first semester of his senior year, Wizard had failed his math class outright and was denied credit for the entire semester because of excessive absences.
The State of Florida requires 4 math credits to graduate, so we needed to do something to salvage Wizard’s math credit. Wizard was confident he could bring up his math grade, but his teacher made it perfectly clear that she wanted him out of her class. She taught him last year and had endless trouble with him doing his work. WineGuy and I met with the HS Dean of Students and worked out a plan: DOS withdrew Wizard from the math class and enrolled him in the second semester of Math for College Readiness, contingent upon Wizard’s enrolling in the first semester of Math for College Readiness online through Florida Virtual School. DOS moved around Wizard’s schedule so that Wizard goes to the computer lab for one class daily to work exclusively on math. Wizard should be able to put in 40 minutes a day on math, but somehow days go by without him turning in anything. He’s managing to screw up Dummy Math. Unbelievable.
Here’s the epitome of stupid: when Wizard applied to colleges last fall, he never followed up on any applications to see whether his files were complete, nor did he forward his scores to any colleges. Fast forward to March 2014, on the day Florida State University notified applicants of it admissions decisions. Wizard arrived home from high school and checked his admissions status with FSU: unchanged. This made no sense to me so I called FSU directly to find out what time they would release admissions decisions. FSU said that everything was already posted online and asked for my son’s information to check his file. Status — CANCELLED. WTF? I asked why. Apparently, Wizard failed to forward his scores to FSU despite their repeated requests for same. At that point, it was too late to resurrect Wizard’s application.
I hit the roof sideways and called WineGuy with the news. Then I told Wizard to call every other college to which he applied and to check the status of his admissions files. Lo and behold, his files were incomplete at a number of schools, but strangely enough most of them allowed Wizard to submit data at that late date.
Long story short: Wizard got rejected from his top 3 schools and is still waiting to hear from 2 schools out-of-state and 4 public universities, 2 of which just received his applications. The disappointing thing is that, at a time when other high school seniors are choosing amongst schools, Wizard hasn’t been accepted anywhere. He’s still not doing his schoolwork and may not graduate.
If he isn’t enrolled in some college somewhere by his 18th birthday in June 2014, we will throw him out. Despite our threatening this for years, Wizard doesn’t believe us, nor do his grandparents or many of our friends. Watch me! I made this declaration 5 years ago, and I will stick to my guns. With all the hell we have suffered at Wizard’s hands during the last few years, we are actually counting down the days until he’s out. Maybe Wizard will learn his lesson when he’s homeless.
I have plenty of new medical news to share about WineGuy, but I’m the sole driver in the house again. Running every which way and tending to household chores is frying my brain.
Instead of writing something meaningful in this blog, I’m ashamed to admit I’ve been playing Bubble Witch in my few spare minutes. The evil hags bring out my inner bitch who has been battling this week with Comcast and the health insurance company, those soul-sucking vampires.
Yesterday was the best damn day we’ve had in a long time. That statement alone brought a smile to WineGuy’s face. Four good things happened:
- Wild Thing went to the dentist for fillings and came away with two sealants instead.
- The surgeon removed the drain that’s been in WineGuy’s leg for months.
- My wonderful friend, Maine Mom, sent me an armful of spring roses.
- Moose passed the Jeopardy! Kids online test and is invited to the regional audition in Atlanta in May 2014. Like mother, like son: I auditioned for and appeared on Jeopardy! in 2007 … and won.
Chemotherapy, clinical trial drugs, radiation, experimental chemotherapy, now what? The course of treatment for WineGuy’s cancer is seemingly endless.
Before the brentuximab therapy, WG’s PET scans showed active tumors in the abdomen and groin again. Clearly, this DLBCL is aggressive and will insidiously grow back wherever there’s a healthy cell. If I haven’t said it before, I hate cancer. Or as Chicago Mom aptly put it, “Cancer f***ing blows.” She’s right.
When brentuximab failed, our oncologist conferred with the doctors at Mass General, and the team came up with yet another cocktail for salvage chemotherapy. As of today, WG’s 57th birthday, he has successfully completed two full rounds of gemcitibine (Gemzar) + carboplatin + rituxin + dexamethasone (Decadron). This cocktail killed WG’s tastebuds and appetite, caused serious digestive distress and fatigue and pain. WG’s blood counts were so low that he had to be transfused twice in one week between the two recent rounds of chemo. The only positive thing to come out of this regimen was that the dexamethasone drastically improved his appetite and energy. On those days, I took him to eat whatever and wherever he wanted.
This week, the doctors are repeating bloodwork and PET scans. We are praying that the PET scans show a complete remission so that we can go on to Mass General for the stem-cell transplant. If the PET scans are not clean, I don’t know what will happen. From looking at WG’s physical appearance — haggard, gaunt, down 115 lbs. — it sure doesn’t look like he can tolerate another round of chemo. Frankly, now, I’m worried.
Whether you pray to G-d, Jesus, Allah, or the Flying Spaghetti Monster, would you mind including WineGuy in your prayers? With the other drama going on around here (another story for a another post), we sure could use a universal infusion of some positive energy.
Early in 2014 we got Mass General’s recommendation for salvage chemotherapy: brentuximab, whose trade name is Adcetris. The FDA approved brentuximab for treating Hodgkin’s lymphomas, but remember that WineGuy has non-Hodgkin’s lymphoma. According to our insurance company, the drug was considered “experimental,” and denied coverage. Read the rest of this entry »
When you’re married to a physician, you become accustomed to a certain degree of respect and deference from the medical community. When respect and deference are not forthcoming, you voice your displeasure, and that usually takes care of the issue. Therefore, when I got none of those things when I tried to have my husband seen at the Moffitt Cancer Center, you can imagine how incensed I was.
Don’t get the wrong impression: my experience simply trying to schedule two Moffitt clinic appointments in one day was the most miserable customer service experience I have ever had, with the possible exception of FPL. Read the rest of this entry »