Chemotherapy
We're on day 20 of this phase of chemotherapy, Delayed Intensification. As has been the case in the past, the steroids have Evan acting out of sorts. He's set to conclude them again on Thursday morning. He's not scheduled for any IV based drugs this week. The reason being is doctors would like to see how his blood counts look before beginning the more toxic drugs. The medical team estimates he'll be at his most vulnerable sometime around Thanksgiving.
Blood Counts
Evan's blood shows average-to-good levels, despite the chemotherapy. Our primary oncologist told us some of these counts are because of the steroids. It has a stimulating effect on bone marrow and this has spiked his white blood cell and ANC numbers. Platelets and RBCs are within normal ranges and Hemoglobin is just under an acceptable level.
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| Family picture from our Camp Sunshine photo session. |
Miscellaneous Health
There are a number of areas the medical team has been working to improve. We have an ultrasound scheduled for Thursday to re-evaluate the clot in Evan's chest. Assuming the blood thinners have dissolved it, we're told we can reduce his Lovenox shots from twice to once a day. The doctors feel that keeping him at once a day would prevent clots from forming in the future.
Today is the last scheduled day of Keflex (antibiotic) meaning we can remove another nine pills from his daily intake. After Thursday, when we get to pull the steroids, that leaves us with Voriconazole as the last important drug. The others he takes as preventative measures from side effects due to the various treatments (Prilosec, Periactin, Zofran, Lovenox).
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| A little Nerf gun target practice. |
Evan has been to the ER a few times over the last 30 days. Each time it was related to a fever and each time blood cultures did not yield any infections. With his improved white cell counts this leads me to believe it's likely some sort of reaction his body is having to the chemotherapy. On the plus side his fungal infections seem to be under control and his overall appearance has improved.
Physical Therapy
Evan's reluctance to walk has caused me to hit my boiling point. We've been walking more laps around the main level to improve his strength and confidence. He fights us every step of the way which makes it even harder to make significant progress. Cristy and I have decided to go back to twice a week physical therapy sessions with Children's Healthcare. Once he gets warmed up with a few laps his posture and balance seem to improve dramatically, I only wish he would embrace the exercise more than he does.
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| Walking a few laps before bedtime. |
Mental Health
At this point on Day 151 we're hanging in there. Our biggest challenge in my opinion is finding time for each other. By the time we get Evan treated, the boys fed, cleaned up and in bed it's usually 9:30. This doesn't include cleaning, laundry, exercise or relaxation time. Speaking for Cristy, I think we'd both agree that as long as Evan comes through this in remission without a relapse it was worth it. I firmly believe we're going to come through this stronger as a couple and as a family.
As with any State of the Union you need to inspire people and give them reason to believe that tomorrow will be a better day. I can tell you Evan is better today than he was in June, July and August. Each day he improves a little bit physically, scholastically and mentally. We address each challenge as they arise, but at the moment our main focus is keeping him healthy while his immune system is so compromised. We'll continue leaning on each other and loved ones to navigate these uncertain waters, looking forward to brighter days.
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| Super Evan! |
I leave you with a song Cristy has mentioned gives her motivation and strength. It's called Unstoppable by Sia. We hope it one day inspires Evan to fight through adversity when he's not feeling his best. Enjoy!
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