I'll start out with a quick thanks to those of you who get a little worried when I don't update more regularly and seek out information about Steve from me or family members. Thanks for reading, and thanks for caring. Or perhaps thanks for being nosy, I am!
Steve has been home three weeks today. His labs have been "good" with ZERO need for platelets (give a sistah an a-MEN!), hemoglobin is behaving nicely, white cells....hmmmmm. "Bouncing around" is the new phrase we hear daily. We have had daily home health nursing visits since discharge.
WBCs were 1.0 today, ANCs at 0.5, so this makes him pretty borderline neutropenic, hemoglobin was 7.9, platelets at 46. He had a bag of red blood today, more of a shoring up (at Christ) than anything, and he no longer needs the wheelchair for short walks, so my Mom did a tuck and roll with him curbside while I took Kevin to the dentist. After clinic last Wednesday he took 2 bags of reds at HIS discretion, and that kept him out of trouble over the weekend. So really it's getting to be more of a maintenance step than a necessity.
Clinic last week was, ummmm, interesting. First of all, he was able to park and walk the entire distance from the garage. A volunteer asked me if I wanted a cup of coffee while we waited in clinic and I was absolutely giddy to have someone wait on me AND I had free hands since we were sans wheelchair. Amazing how something so simple can bring such joy! Weigh-in was startling. He was 148 with Nikes and clothing. Our APN, Donna, was stunned at another 20-ish pound drop. He was at 191 at discharge 3 weeks ago. Steve has named himself "Skeletor." We are trying to find something funny about this. Dr. Altman made a beeline to his now svelte ankles that had been cankles for months. She wasn't alarmed. She is too cool for words.
And then, the defining moment of the exam. "Well, your platelets are doing wonderfully!!" she squealed. May I ask the teacher a question? Yes. How high do his platelets have to be for surgery? She yelled, "SUE!!!!!" Sorry, did I just play your best card, Jessica? She turned to Steve, then to me, and said, "he is good now. Steve, will you please consider meeting with a surgeon SOON?" The rest of the conversation was not pleasant. I am now referred to as "the cheering section." Another tri-phasic CT scan was ordered for next clinic day, which is tomorrow.
Here is my wording on what the deal is: After two splenic embolizations, his labs are not where they should be, as far as a trend of improvement. They do NOT want to risk any loss of progress. They do NOT want to risk losing the 2nd transplant. If the spleen is still inhaling cells and has no further room for zapping, they want to remove the organ. If the spleen still has a good amount of functional tissue, they will embolize him a third time. Embolizing him is less invasive than laparoscopic surgery. Steve is hanging on to that spleen like a tightwad hangs on to their Communion money.
On a more cheerful note....Steve's appetite, and I hesitate to reference it as such, is markedly BETTER. He is starting to load calories, carbs and protein, but with much measured caution. Brownies are fearful in the house. He had a Big Mac yesterday, and his sister Mary made the now Internet-famous $5 Dish for us last night. Thanks, Mary, for cooking, driving out, waiting on us, and cleaning up, such a treat! He had spaghetti tonight and is also sleeping very well. Again, who wouldn't with Dilaudid and Ambien??
He has a consistent amount of back discomfort from splenic infarcting, a good sign, I believe??? The tale will be told tomorrow with his CT image.
Keep in mind that there is ONE other person in THE WORLD that has/had a "similar" case to Steve's, but not exactly like his case. Our doctors have reached out to their "thinking community" around the globe...Italy, New York (Sloan-Kettering), etc. for input and collaborative discussion. The heads of all five pathology labs at Northwestern Memorial Hospital have been personally involved in Steve's case, as well as the head of the blood banks at NW and at Christ Hospital. Northwestern has taken a conservative course (embolizations, choice of meds, etc.) when needed, and a more aggressive (HyperCVAD chemotherapy regimen) approach when deemed appropriate. His leukemia diagnosis has never been firmly established, as it has characteristics of several types, PLUS he has Hereditary Spherocytosis, a type of hemolytic anemia, from birth...the "double-headed monster" coined by our Dr. Tim Huyck. Steve is alive and progressing to good health.
I am grateful to be able to share this knowledge with all of you, and hope that maybe you will think back to this blog someday for help or assistance if you need it. You never know if it will be your turn.
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