This Week in Review (and it’s only half over)

Let’s start post-Star Wars. Sunday night max woke up 11:00pm screaming and clutching his head/forehead/eyes in pain. This went on for 20-30 minutes with a minute or two of “calm” here and there. It was horrendous. The pain was so bad he eventually threw-up several times. Andy & I didn’t know what to do except give him lortab and wait. We phoned the doc on-call, got his opinion, and drove Max to the ER at midnight for a three hour tour. By the time we were half way there his headache had subsided and he was just sleepy. The next three hours were pretty much a waste of time. Andy and I got a great three hours of sleep that night. Ah… refreshing!

Monday found Max & me at clinic to talk to one of the oncology docs about the previous nights’ ER visit. Decided to get a quick CTscan of Max’s noggin to see what may have sparked the headache. He continued to have two more headaches during the day – not as bad though. He also needed his weekly platelet transfusion which took all day… Beth! Just kidding – I was too tired to be upset. (The joke here is that one of Max’s nurses misplaced his platelet order and we discovered the error…oh, about four hours later. You can see I was really on the ball, too, letting so many hours pass without noticing.) I think Max was comfy hanging in a bed all day after his ER visit. **Max’s CT showed that the skull mass has decreased. Good news. Headache may have been caused by one of his meds.

Tuesday Max went for a physical therapy appointment in the morning, cancer camp from 11:00-3:00, and an MIBG injection at 3:30.

Wednesday was huge scan day: MIBG, CTscan of the head and chest w/ and w/o contrast, and an MRI of his entire spine. Andy & I get to watch the MIBG as it appears on the computer screens and get instant feedback. Max’s skull definitely had less uptake in the area that was radiated. His thighs looked a little less bright as did the iliac crests. Other areas looked the same as the previous scan, with a little more enhancement in his tibia (shins). So from the parent-reading-the-scan-perspective, some things looked better and others looked a little worse. From my perspective, I was somewhat surprised that the whole scan wasn’t riddled with neuroblastoma and that there were spots that had improvement. We’ll have an official reading hopefully Thursday where all the scans are looked at together and compared to old scans.

Thursday will find Max at cancer camp from 9:00-2:00 (hopefully) and back to clinic in the afternoon for vinblastine.

Friday may be the only day Max gets to spend the whole day at camp 9:00-3:00.

So how’s Max feeling? He is constantly nauseated. He carries his barf-bin around like a security blanket and appreciates quiet. His nausea and diarrhea have been going on for weeks. Leg pain persists. Walking is difficult and painful. Decadron, one of the meds Max takes for pain is a steroid and makes being around him like walking on pins and needles… his mood can change from great to crying or angry in a heartbeat. He notices his own uncontrollable moodiness, too, and it makes him sad.


Anonymous said...

I know this is a roller coaster of events and emotions...I pray that Max will be feeling good enough to attend camp..and have some fun! Sending positive thoughts...prayers...and love. Linny

Anonymous said...

Praying that the official scan results will show improvement, that the VMA & HVA will be confirmed, and a turn around has started. Keep fighting, never give up! xolisa

Tia said...

I just want you to know that I have been reading for a few weeks now (and Deb's blog) and pray for Max every night. You are an amazing family and reading your posts make me realize how quickly things can change and in turn, makes me a better mother to my own sweet girl. Thank you for that. Sincerely, Tia Davis, Cleveland, OH

San Diego Mom said...

Test of endurance for all of you.....one day: an exciting day with Star Wars visit, followed immediately by sleepless ER visit. Where can we all find bottomless well of will power to fight? Can a love for a child alone carry us all through? Your journey makes me reflect and think; what if it was us? Can we stand up like the Mikulaks? Not only Max but you two, Andy & Mel, are truly inspirational. Hang in there and never let any desease, any institution, any nurse (who forgets the order) let you or Max down! Shiho

Anonymous said...

Eh- sounds like a rough week peppered with some great moments in between. The great moments make all the other crap seem not so crappy sometimes- I hope that was the case for you guys this week. I hope Max had fun making airplanes at camp. Sending good vibrations your way for improvement in scans and markers continuing to head in the right direction. Thinking of you
Carrie P.

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