Home sweet home. Its hard to believe the extremes and the torture that Max has been through, harder to believe how resilient he is. Home just 3days after neuro and head surgery, amazing. When he first woke only an hour after surgery and wanted that tube out and fought hard for it, I was so relieved to see it was him, that his brain had not been damaged, my Max was fully intact.
The days after surgery were filled with all forms of torture that no child should ever go through. The first morning after surgery they xray’d Max and found that the central line (high flow IV into an artery in his chest) had been placed to deep and can cause heart arrhythmia so it needed to be moved. This was done while Max was awake and entailed removing stitches, moving the line and re-stitching him. It was agonizing pain for him. The resulting stitches were placed in too tight and caused severe pain all day. One of Max’s neurosurgeons came by and volunteered to remove the worst stitch. She tried with the standard tools but it was too tight so she ended up using scalpel to cut it out. This was only the beginning of the pokes, prods and pulls that continued over the next few days. Right up to the end, several nurses spent an hour trying to remove the final two stitches of his central line before they gave up and just left a stitch in for someone else to deal with next week. Max, Mark and I were completely wet with sweat from the torturous episodes. Max has been traumatized from the years of pokes and prods that he has been through, Im not sure how we will get through the years ahead. Not sure how he will get through the removal of the stitches in his head next week, the staples in his head the week after, the aphaeresis catheter placement and blood harvest coming up, the chemo, the stem cell harvest………This is only the beginning of the journey. 
Despite the hell we went through there was also so much support and kindness from friends and from the medical staff. Patty had our nurse friends all ready to go to give Max VIP treatment and the best of care (and to bring me lots of Starbucks). Dr Armene who interrupted her surgery schedule to race down to the MRI and remove Max’s drain from his head while he was anesthetized so we could avoid another traumatic session. Dr Levy and Dr Weisman for doing a great job and returning my hero back to me intact.
Posted on 26 June '10 by admin, under News. No Comments.
The surgery took 8 hours and went well. The neurosurgeon was able to make a clean resection and the tumor had not entered into his brain dura, this is great news. The head and neck surgeon removed the bulk of the tumor cleanly, it was a little fuzzy where it spread into the infra fossa muscle that controls chewing so he removed a portion of that muscle as well. He removed the visible cancer tissue and now recommends spot radiation and chemo to treat any remaining cancer cells.
Max went into the PICU for recovery and began fighting immediately. We expected him to be intabated over night but he woke up immediately and wanted the breathing tube out. The extabation process takes a while but Max did great, and so did dad, he really helped Max get through it. Right after that he asked for a slurpy but settled for a popsicle. He is sleeping calmly now. His vitals are strong enough that they will move him from the PICU to the intermediate care unit today, it will be another long day of removing nasty tubes, IV’s, catheter and a drain, just amazing how many. Max is being so brave and strong.
Posted on 23 June '10 by admin, under News. No Comments.
We are still trying to schedule the surgery to resect the tumor before it grows into Max’s brain cavity. Aligning a head/neck cancer surgeon with a pediatric neurosurgeon appears to be impossible, I am frustrated beyond belief. We are hoping for a cancellation in the next few weeks so that they can squeeze Max in. Tic Toc. We are also contacting other facilities. I keep wondering if this is a sign, maybe the surgery isnt meant to be. I really don’t want to go through with it, but I do believe that it is necessary.
“Embrace the suck” was the motto given by a US soldier on how to deal with the harsh situations in the Afghan war. Our neighbor/author Eric Blhem was inspired when interviewing a soldier about his focus on the positive, no matter how small, even a dry spot under the brim of his hat in a torrential rain storm, just to get him through the night. When we told Max that the cancer was back, he was pretty upset about all the needles and shots ahead, but then decided to focus on something that makes him happy, he gets to be bald again. Yes, happy to be bald. Max’s favorite super hero is the Avatar, the Last Air Bender. A tv animated series about a child monk that is bald, he has super powers and has to save the world from the evil. Max will get to be just like the Avatar now. So, like Max, we continue to embrace the suck, to focus on the good things in our lives.
Heres a few pics of our fun trip to Hawaii.
Posted on 10 June '10 by admin, under News. No Comments.
Despite our extreme efforts to conquer this beast with love, fun and the best alternative meds and immune therapy that money can buy, the tumor in Max’s head has continued to grow. This aggressive cancer has grown 6mm since his scans in April, now 2.5cm x 1.5cm and is pushing up towards his brain cavity. Its game on time, time to let the doctors do there thing. A team of surgeons is gathering and planning his surgery, we are just waiting for them to say go.
Posted on 1 June '10 by admin, under News. No Comments.
