We haven't posted medical news since May 10th so I guess it's time to get ya'all up to date.

Max's MIBG scan from May 9 looked roughly the same as the previous scan. No obvious changes to anything. It is, of course, hard to detect what's what in a scan during active treatment that is hopefully killing cells because the dying cells will still light up in the scan. It did not appear that there was anything new.

Radiation on Max's femurs ended May 13. Team Max realized about halfway through the thigh radiation that the leg pain wasn't being addressed through that medium, but instead controlled by an anti-inflammatory steroid. The assumption then was that the cancer in his lower spine was causing inflammation and referring the pain down into his legs. So, on May 14 Max started radiation on his s1-s3 vertebrae and skull. (You could actually see the bump on his head where the bone was swollen due to the cancer, which means it was pushing inward as well.) His appointments are 7:00am weekdays x 13 days, he's sedated for each, and is home by 8:00am (provided he isn't expected at clinic) where he can take his morning meds and be off to school! This treatment is going well and will be completed Friday. BTW: the old pain in upper legs seems to be gone for the most part.

Max started his second cycle of velcade/gemzar Monday, May 19. Shortly thereafter he began having a lot of leg and arm pain. He even missed a day or two of school because of it. He took his second dose of Velcade that Thursday and the pain became almost unbearable. By the weekend he was taking a lot of pain meds. They mostly didn't work on the pain, instead they made Max sleepy to the point of going to bed at 5:00pm. Saturday morning, after sleeping 'til 9:00 which is unheard of in our house, Max woke up felling pretty good, smiling, ready to play a video game. A few moments later he was crying and screaming about pain in his arm. It took several minutes for the pain to diminish to a point where he could gain control of himself. The rest of the weekend was spent monitoring Max's pain.

As Andy wrote previously about speaking with Dr. Sholler (while she was in the hospital!) last week, we had to deal with a sudden increases in some blood and urine markers that basically read: "new cancer growth going on inside." She gave us some ideas of what could help and we went through the weekend with thoughts of cancer progression bouncing around inside our heads.

Monday morning, Memorial Day, I sent an email to the doctors about the situation, looking for a little feedback to get us through the upcoming week. Later in the day Dr. Sholler phoned us and Dr. Roberts and I exchanged more emails. Both of which helped get us through the rest of the day.

Max has required three platelet transfusions, one each week, and one red blood trans. I expect he'll get red blood later this week, too. This is definitely a record for Max. Low blood counts can be attributed to current chemo and radiation treatments, and weak marrow due to 19 months of continued treatment. The interesting thing here is that his white blood cell count and ANC have remained strong...

... up until Tuesday (yesterday) when he was to receive chemo again minus the velcade. Both whites and ANC had dropped and he needed a platelet transfusion. The doctor ordered IV GCSF to boost his whites in an effort to ensure he can receive chemo this Friday. Max & I spent the day at the clinic Tuesday getting platelets, gcsf, IV hydration, an xray of his left arm to rule out a fracture as cause of pain, and leaving several vials of blood and two cups of pee...

... We are still tracking his urine and blood markers to try to determine what's going on inside his little body. Are the bad guys getting their butts kicked? It's been a frustrating time trying to do this as the labs sometimes take 1-2 weeks to give results. It seems ridiculous and we're trying to figure out the system to make it work better for us. But jeez... what a pain in the ass.

Max is at school today. I just received this note from his teacher, Lisa:

I have my computer back for a minute while your son goes "poop." (notice he's your son when doing that!!!) :) Just wanted to let you know about today... he's used the wheelchair to go to art and back to our classroom and again up to Julie's for lunch. She delivered meds at recess to our room. He has opted out of recess for both morning & lunch and also opted out of music ("she makes us move a lot!") & science. However, he says he wants to finish the day out, so GO MAX!


Randee said...

How in the world do you keep all of this straight? We do so appreciate your updates and pray the increase in numbers is because the good guys are kicking butt!!!

I had such a good time with your sweet kidlettes on Sunday night I think we should do it again soon. Just call when you are ready for a night out again--if I don't hear I'll call you!! Love you!!

Anonymous said...

Hang in there and let us know how we can help.

Anonymous said...

Max is one amazing little guy! He lives his life to the fullest...we can all learn from him. Hope you have a great family week end...Sending prayers and positive thoughts..xo Linny and Libby dog

michele vaughn said...

Dear Miklulak Family,

Your family is amazing! Keep kicking butt.

For the past 10 years I have been a relay for life team captain. I would like to honor Max for fighting so well by making him an illuminary for the relay.

I would also like to put more info about the neuroblastoma at our team site. Is there a web site that I could request info or do you have info that you could send me to put on display to make people more aware of this cancer.

Please email me at sfdmissy@yahoo.com if you wish otherwise I will continue research on my own.

Thanks for being strong and showing the rest of us how important life is to cherish every day!

Take Care and continue to stay strong and never give up!!!

Michele Vaughn

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