Fishes for Max

Just a reminder that Max still needs decorations for his hospital room! Max is due to go in for his stemcell transplant the end of March for an extended stay, 3 weeks of which will be in isolation (confined to his room, minimal visitors).

I am planning on decorating his hospital room in an under-the-sea theme, but, I need your help! I'd really like homemade (or school-made) decorations, like hanging mobiles, pictures, posters and drawings... as long as its lightweight and can be hung on the walls or from the ceiling (there's no table space to set things on). He will have a window that can be decorated with clings. I also plan to hang a blank blue poster board for him to decorate whenever he feels up to it, so if your kids make really small stuff we can use it for that.

If you have time, I'd love to have a photo of each artist to share with Max as well.

Chemo6 Coming Up

It's been 21 whole days since Max's last chemo and he's due for #6! We were hoping to get him checked in March 1, but the Doctor wants to wait a few days to make sure his blood counts stay up. Max received red blood and platelets last week and his counts were great today, however, because he's further into his treatment his bone marrow has a harder time manufacturing his blood. One of the nurses said, "once the kids get further into treatment their bone marrow just gives up and yells Uncle!" So we have to expect delays!

We hope to check-in on Thursday!


Chemo 5 wrap

Sorry this is a late post. Max's fifth round of chemo ended last Friday (2/11) with good results and a happy Maxi-boy leaving CHSD. We were able to meet with his new doctor, Dr. Roberts, who reviewed Max's case with us and also gave us some additional insight into 'what to expect' going forward. Delays, such as we experienced with this round, are to be expected as the cumulative effects of the chemotherapy drugs have their effect on Max's ability to recover in as timely a manner as possible. This means that most likely Max's seventh round, which includes his stem cell rescue procedure and 6-8 weeks in the hospital, may not take place until April. That said, Dr. Roberts had no problem with our plan to take the family on a short vacation prior to Max being admitted for this extended period.

Max had a great time in his Pirate themed room threatening the nurses and doctors with his sword and telescope and offering everyone "treasure" from a pirate ship tin full of cookies. He met some big-boys who are also bald and came to the conclusion that the whole ward was full of pirates! Shiver me timbers!

Also during Max's 5th chemo session he was able to participate in a drug trial for an anti-nausea med called Palonosetron which has been used on adults for over a year very successfully. The med worked great for Max, too. He was given one dose prior to his first chemo dose on Monday and was nausea-free and in very high spirits until Thursday AM when he got a little sick. (Back to the regular meds!) Max has been nauseous every morning since coming home, which hasn't been fun for him. Today, at his clinic appointment he got sick all over himself, which meant that he came home in a hospital gown as his clothes were covered.

Nevertheless, Max continues to defy any threat of becoming burdened with his cancer and its symptoms, treatment side effects or his shots, and so remains an inspiration to Melissa and I every day.

Max had his heart tested as a result of some of his chemo drugs.


Chemo 5 on!

Max finally was able to be admitted to Children's on Monday. He is doing great. He is participating in a clinical trial for a new type of anti-nausea drug. I'll post the drugs Max is taking for those interested in a later blog post (the list is at the hospital). There is a new photo of Max with all the diodes attached to him on the photo site here

Max got up early today and wanted to find 'the bike', a specially modified tricycle with an attached IV tower for a patients drug bags. Max was watched over by his Aunt Randee for the afternoon and played pirate and generally had a great time.

Melissa brought Hannah to the hospital in the afternoon and Max got to hang with his sister for a couple hours. Since we move both of them into the same bedroom this fall, Max and Hannah have never been closer and so both of them miss each other greatly when they are separated. Still, a small price to pay for the long-term benefits. To anyone reading this with kids relatively close in age, I would recommend trying the shared room concept!


Chemo 5 delayed (again)

Max did not check in on Wednesday (2/2) as we had planned and hoped to do. Same problem - white blood cell (WBC) count too low. So, as punishment for being such a bad boy we decided to give him some shots. Just kidding, of course. It wasn't punishment for being bad, but his doctor did want to try to boost his WBC count and so we have to give him GCSF shots through Sunday night. He obviously doesn't like these shots, but this is what has to be done. During Max's next stay in the hospital I am going to get one or multiple 'faux' shots - get stuck with a needle, basically - so that Max understands that its not just him that has to get shots. Hopefully it will help him handle these shots better emotionally from then on, as its pretty traumatic for him. That's all. Wish us luck in checking in successfully on Monday.