Radiation Set to Start

Max's appointment with the oncologist/radiologist went pretty much as expected.

Max will get a very low dose of radiation over a very small area (what's left of his tumor) as insurance that the tumor is really dead. The doctor doesn't expect Max to have any adverse side effects like nausea or vomiting or fatigue because the area and dose are so small. The treatments will start on Monday May 30 and will happen daily for about 3 weeks. Each treatment will take about 5-15 minutes total.

Max will have a trial-run this Thursday to introduce him to the room and where he has to lay, etc. Most likely Max will not be able to lay still for the treatments, so he will get anesthesia each day. No one can be in the room with him and there are no windows for him to see anyone through. We'll see how he reacts, but I'm not sure even the DVD player will be much help!

Max wins Pretty-Pretty-Princess! Like those earrings?


Radiation treatment and update

We are going in today (Monday 5/23) to Moores UCSD Cancer Center to have a consult with the pediatric radiologist who will let us know what radiation they think is necessary for Max to have in order to be thorough in his treatment protocol. Even though, as of his last diagnostic update before his stem cell transplant, Max was esssentially cancer-free, this cancer is just too aggressive to leave the door open to any remaining cancer cells.

We were prepared for this of course and we don't anticipate any suprises. Most likely the radiation will be concenctrated at the site of his tumor -- or what's left of it (left shoulder/neck).

This weekend we broke the rules a bit and we went to the beach. Even though Max is still supposed to be in isolation, it was too much to resist... and Max was soooo happy to be out and about, with his feet in the sand. You could just see the joy in his face as he rubbed his toes in the sand!

We'll post another update after his radiation consult later today.


Max Under House Arrest

Max has been home now for almost ten days (24 days post transplant) and he's doing great! You'd never he know in a million years that he had some crazy amounts of chemo and a stem cell transplant if you saw him.

He's officially under "house arrest" as I call it. But, better here than in a small hospital room. His isolation period will last until the end of June, possibly end of July, but he's doing so well that we're banking on the June date. Until then he's not permitted to go outside (although we do let him into the backyard for a little while each day with a mask on), and absolutely no visitors - especially kids, which is breaking his heart because the kid needs to see his friends! The no-outside-rule is due to airborne fungus and molds that he could inhale and become sick from. The no visitor rule is to keep the germs and bacteria he's exposed to to a minimum (again, fine with me, because I certainly don't want Max back in the hospital and I don't want to sleep in that chair again!)

He's doing quite well just hanging in the house and keeping busy with his plethera of toys and DVDs. Every once now and then he gets a little grumpy because he wants to go to the train museum or a park or the beach, but he seems to understand when I remind him that he could be stuck in a hospital room instead of being home. Such a trooper!

Max is taking only one oral medication each day... and he hates it. So you can imagine how fun it is for mommy to force it down his throat each morning. He is only going to the clinic once a week to have his blood counts done and get an IVIG (an immune-antibody something or other infusion).

Max's red blood and platelet counts have stayed up since he engrafted, although last weekend we had to give him two shots to boost his white cell count.

Again, your thoughts, prayers, positive vibes -- whatever you're sending his way -- is working and we thank you!



3 weeks and 2 days. Almost a world record... He'll be released in about an hour (1:30P). Gotta run...


Miracle Max!

Okay, this kid is just a miracle! We are thirteen days past Max's stem cell transplant, he's been in the hospital for a whole 20 days, his blood counts are out of this world, and as soon as he eats a couple of meals in a row he gets to go home.

Yes, you read correctly: gets to go home. (I hope he eats a great dinner!)

They cut his IV nutrition in half today, to 12 hours per day, which has already helped his appetite come back. Today for lunch he had 1/4 hot dog and 1/2 choc chip cookie. He's on the right track!

Max's blood counts have stayed up and he received his final GCSF shot (white cell booster) Saturday night. He only received two red blood transfusions and two platelet transfusions during this whole stay.

Max is obviously feeling great. Energetic and happy. We remind him daily that he can go home in a few days if he eats well now. He seems to understand and is doing his best.


Weekend update - After dad's stay this weekend.

Max's ANC (see post below for reference) was over 24,000 today. This basically means that a homosexual rhino that just came back from a 'boy's weekend' on Castro Street in San Francisco, and which coughed in Max's face and wiped his nose with Max's hand wouldn't be cause for Max getting sick. More important, his red blood cell count went up, which is the last to rise and which truly signals that he's producing blood on his own and at a fairly good clip. Super Stem Cell Boy is his name for now...