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| Showing off his Power Rangers ring. |
The second half of Delayed Intensification begins Tuesday with a six hour chemo session at the clinic, along with four days of shots here at the house. There are daily oral meds that he'll begin as well. There is still the outstanding question if our insurance will cover the shots to be taken home or if we'll need to go back to the hospital every few days to pick up new syringes. Our primary doctor has warned us of the very real possibility of Evan being hospitalized for stretches during this treatment. Evan's hair has really started to grow back, but I'm interested to see if these medications will also cause hair loss or not. I'm hoping there isn't much excitement for us over the next 30 days.
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| The Pruitt boys getting ready for fireworks. |
Both kids and Cristy are sick right now. I'm getting over some sort of a sinus congestion or a cold myself, but it looks like I'm at the tail end. Because Evan already gets two different types of antibiotics if it's bacterial in nature his cold is likely being eliminated by medicine. His blood counts are still strong right now too which doesn't hurt. With any luck we'll all clear this funk before Evan's counts drop. Now let's move on to FAQ #2. If you missed the first FAQ here is the link.
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| Happy New Year! |
How is Evan?
As of January 1st, 2017 Evan is doing well, all things considered. The bone in his ankle hasn't quite healed yet, which is preventing him from walking. That said, he does tremendously during PT sessions and hasn't complained about pain or discomfort since the 2nd surgery. His appetite has shriveled up again, but we have the feeding tube to help keep his weight at an acceptable threshold. His infections appear to have dissipated and he's not showing any symptoms of new infections.
Why isn't Evan walking yet?
This is a much trickier question to answer. The bone infection that Evan had originally was fairly far along. It most likely came about during Induction when his blood counts took their first hit. After his first surgery things appeared to be progressing, however Evan's Keflex (antibiotic) prescription ended and the doctors believe this allowed the remnants of the infection to flare back up. Infectious Disease learns more about Evan daily and needless to say we'll be on Keflex for the foreseeable future. We just need to try and remain patient and allow his bone more time to heal.
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| Warming up with sparklers. |
How are you holding up financially?
Cristy and I are doing fine at the moment. My primary insurance covers the majority of our expenses and Medicaid covers the remainder. With 2017 being a new year my max out of pocket costs will reset, but we've prepared for it. We're extremely fortunate that finances is one thing we haven't had to fret over much when you consider everything going on.
Why does Evan get so many infections?
This is another question that the doctors are still trying to answer. It's true that cancer patients are more susceptible to infections due to low blood counts, but in Evan's case he seems to have problems even when his counts are well above acceptable ranges. The Oncology team has sent blood samples over to the Immunology team and we're awaiting consultation from them on markers that stand out. There is a belief by some on the medical team that Evan's immune system is not operating as efficiently as it should.
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| Candid photo during the fireworks show. |
How much longer is Evan's cancer treatment?
Until we hear otherwise I'm going on the assumption that it's still another 30 months. The bridge chemo that was necessary to allow Evan more time to heal may have impacted our end date slightly. The Oncology teams in both Scottish Rite and Egleston all know Evan's situation and they meet about him regularly to discuss treatment options. Needless to say Evan's schedule has been tailored and his needs have caused the doctors to refer to global case studies and clinical trials to gather more information.
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| Oohs and aahs were heard from the peanut gallery. |
What does a typical day look like?
I get asked this occasionally, although maybe not verbatim. Our day starts with 8:00 a.m. medications, these always include Voriconazole, Keflex, Periactin, Zantac, Zofran and Lovenox shot. On weekends we also have Bactrim to administer. Obviously his chemotherapy drugs vary so it could also include us giving these pills or shots at this time. We also use this time to flush and clean his PICC lines. After an hour Evan is allowed to eat so we'll prepare breakfast and usually have to make it with as many calories as possible. Again, depending on what sort of chemo drugs he's on we may or may not have to provide those. He receives two doses of Periactin and a dose of Keflex in the middle of the day. We eat dinner from 6:00 - 7:00, giving him an hour before getting his next round of drugs/cleanings at 8:00 p.m. At night Cristy starts his feeding bag, providing Pediasure, starting between 9:00 and 11:00 depending on the medications he's taking at that time. Our goal is to get 1500 calories in him, so the number of cans at night may vary.
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| Peek-a-boo! |
The Cobb County school system arranges for a teacher to come to our house once a week to teach Evan and keep him up to speed on the curriculum his classmates are following. Our plan had been to let Evan start attending school after the new year; however, his chemo schedule being pushed back and his lack of mobility have hampered this plan. We'll need to see how the next few weeks go, consult with his physicians and make a decision in the near future.
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