Weekly Update

How could another week have possibly gone by already? There is so much going on with Max right now I think we're going to make a concerted effort to post a weekly update. We'll see how that goes...

Max was able to go school Wednesday and Thursday last week with a little wheelchair assistance. His legs are still hurting now and then from Velcade and it's nice for him to know that he has it there in case he needs it. Friday we spent the whole damn day in clinic just trying to get a 90 minute chemo infusion. Everything was going wrong there (not for us), but the wrongs affected our wait beyond belief. I'm over it now, but it was not a good day for Max and I at clinic. Grrr.

Max had a great weekend! Spent Saturday afternoon at the cousins house in Alpine with a 24' tall inflatable waterslide, giant African tortoise, playing video games in the garage on the 40" plasma screen w/ surround sound while sitting on a sup'd up golf cart... need I say more? The kids just hate having to go there.

Sunday we went down to the park by the beach, had bagels and cocoa, played with a lot of friends who showed up and waited patiently for a steam engine to come roaring past 10:30ish. It was late... 11:30? no... 12:30... no. The patience factor expired here and we left. Five minutes later the steamer blew by. Oh well. The kids had more than enough fun with Ryan & Kasey, and Noah & Zoe. We took the afternoon off and relaxed at home!

Monday morning found Max heading off to his last radiation appointment for his skull and lower spine. I secretly call him Patch now because the radiation to his skull has left a big, shiny bald patch. Then he was off to clinic for his last Velcade this cycle and a bunch of specialty blood draws. He was able to head to school for about two hours before I had to pick him up and return to clinic for a double transfusion: blood 6.0 and platelets 9. Shortly before finishing the red blood at 6:30pm he started getting a fever. (Bad: fever=inpatient.) The nurses had to keep him longer to watch for any other possible transfusion reactions. His fever kept going up, but his ANC was good, so they gave him an antibiotic and tylenol and sent us home at 8:00pm with a 103.4 fever. (Yay for going home! even though I was sure we were going to have to pack a bag and return for an overnighter.) We didn't. Instead the Velcade side effects kicked in full force giving Max unbearable leg-pain-spasms that started around 10pm for 5-10 minutes each, every 1.5 hours. All we could do is comfort him while waiting for each spasm to pass. It was a long night.

Tuesday, Max missed school due to the leg pain. He couldn't even walk to the bathroom. It was just as bad as the previous night. Andy spoke with Dr. Sholler in the morning and she had us give him a one time dose of a certain steroid that seems to help with the pain. We also switched him from one nerve med to another. By the late afternoon he was much more comfortable and actually walking around by himself. What a nice surprise for Daddy to come home to after all the text messages I sent him throughout the day. (Dr. Sholler is helping us a lot with this particular chemo cycle because she's running a study on it in Vermont.)

Wednesday and Thursday Max was back at school in his wheelchair. The PE teacher had some great games set-up on the playground that Max could play while in the chair. He had a great time out there - thank you, Coach Davis! He was also very happy to be with all his friends! Thursday afternoon he was back at clinic getting a routine CBC. His platelets were only up to 30. Hmmm...

Friday Max was back in school in his chair. There was an all school assembly. Max was chosen from his class to receive an award for Citizenship. He's such a good kid! Friday was also Field Day at school! Woo-hoo! It's kind of like the Olympics for the whole school. There are about 20 different games on the field and the classes rotate through each one. Max actually got out of his wheelchair and participated in half of the games before he pooped out. He ran, jumped, hopped, balanced and more! It was a great day (I hope we don't have to pay to dearly tonight for all the movement he put himself through!). I took Max to clinic after school just to check on his CBC's and sure enough his platelets had dipped to 16 already. He stayed at clinic for a nap and big ol' bag of platelets.

He is still experiencing a lot of pain in his legs presumably from the Velcade. Another child in Dr. Sholler's care is experiencing the same spasms after the fourth dose (same as Max). Next cycle if we're still using velcade/gemzar we'll probably skip the fourth dose.

Week of June 9 will find Max getting a CT scan, EKG, MIBG injection and scan, MRI and a bone marrow aspiration. We will post results as soon as we have them. We're really hoping for some good results this time.

Max finishes 1st grade officially on Friday with his class!