Week Two of Chemo

Max is holding up pretty well so far under his current treatment. He's half way through week two of the irinotecan chemo and his spirits and energy levels are great. (He did receive a red blood transfusion Monday to allow for good energy!) Only set back is the nausea. Yesterday he threw up as we arrived in clinic and again at lunch at school. He feels really yucky when he wakes up every morning, which is surprising to me as I'm up at 5:00am giving him his anti-nausea meds. By 7:00 when he wakes up they should be in full swing. Oops - one more set back is the chemo-induced-diarrhea. It's not out-of-control (hope to keep it that way) and we're giving Max atropine M-F in clinic, suprax 1x day at home, and 30ml Immodium daily (the maximum dose). Can you imagine how backed up you'd be?!)
What's left of his hair is still in. I don't know how long that will last. Two straight weeks of chemo plus he'll start 10 days of radiation beginning Monday, April 21. I think they're looking at treating his lower spine S2-S3 and his femurs (thigh bones).
Max has been experiencing a lot of pain in his legs over the past week. Causing limping and lot of "Ow, Ow, Ow!" with a furrowed brow. This would indicate a lot of pain as Max doesn't complain about pain to much. We were giving him Tylenol w/ codeine but it didn't help much. We've moved him up to decadron per Dr. Sholler. The pain could be caused by cancer aggravating the bone or by the chemo killing cancer cells. 180 degree difference and no way to tell either way.
Max is going to have to experience GCSF shots again to boost his white blood cell counts following the end of this chemo cycle. We'll start this weekend. Gee - I can't wait. Max was a total trooper last time we did these -- they are very painful shots, one every night in his thigh for about 5-7 days. The actual poke isn't felt thanks to numbing cream, but the medicine stings or burns as it's pushed in. Max and I do this alone - yes, I give the shots and Max sits still. His incentive is a prize. We used to give him a Hot Wheel after each shot but he's burned out on those. I've got to search for a new $1 prize and stock up. The GCSF shots aren't just tough on Max: His cries really upset Hannah and I'm sure Nicky's going to be affected by it.
Yeah - those other two kids live this cancer, too. They're both so helpful: Nicky likes to bring Max's IV pole when he sees me filling up Max's feedbag; Hannah helps crush pills and mix the meds along with being mini-mommy to Nicky when we need him distracted. There's so much time and attention focused on Max that I really sorry for them. I make a big deal out of small owies - lots of medical attention! And try to make time to dote on them, too. It's a sad but true fact: they're second class siblings.
In review of Max's treatment:
  • Last week and this: clinic for IV chemo, 2 blood transfusions.
  • Next week: radiation and UCSD Cancer Center, CBCs at clinic, transfusions if necessary.

Max is tired of being here at clinic and just wants to go to school with his friends.


Vickie said...

Would neulasta (once each cycle) rather than daily GCSF work for Max? Erin really appreciated the break from the daily shots (which frankly ruined her day).


Anonymous said...

We love you Max!

Anonymous said...

oops that last comment was from us :).
The Ross'

Randee said...

You are warriors--brave, couragious and sacraficing--all of you--each in your own special way.

Continuing prayers and heartsfull of love!!!

Anonymous said...

Melissa, I have had a lot of time to observe you and your family...and there's one thing I know for certain...you are an AMAZING mom to ALL of your kids! I'm afraid I probably have sung your praises to everybody but you. Hannah, Nic, and Max are all very blessed to have you and Andy as their parents. xolisa

Erin Newman-Smith said...

We are praying that the pain in Max's legs are those dang cancer cells dying! What a trooper Max is! Such a strong boy. And Melissa, Hanna and Nicky understand. They know that on the rare occasion, they might not get all the attention they want...but it is for the greater good. Hugs all around.

Cousin Erin

Anonymous said...

I just love Max's attitude. we could all learn from him in our daily walk. when I think about complaining I think of Max and that puts things in perspective for me. I wish we could wave a magic wand and have life become normal for all of you.I pray for you and your family daily. God Bless all of you. Jon

Anonymous said...

Melis and Andy
Cherish your children even more than you do already. They are a gift from God for
you to love and care for. They are magical, imaginative and beautiful in everything
they do. Close your eyes and see it in everything they do, good and bad..quote from a mom we know.

Max you rock my World!.... and with Hannah and nicki...we are the world!!!peace out yo!


Anonymous said...

We are praying for you and love you little Tiger man!! You are the bravest child that God has ever blessed this earth with.

XOXOXO Kim McCully and Sydney

San Diego Mom said...

Just reading Max's treatment plan and what it means in terms of actual things YOU have to do and its effects on Max makes me cringe. It's not like reading a medical paper describing administered medicine. It involves actual people; parents who would throw themselves in front of a car to save their kids and would do anything to take away the physical pain of the sick child and emotional pain of his siblings. The only thing I can do is cry reading your blog. But hopefully my tears and prayers will give a tiny bit of boost to your will power to continue this path.

Anonymous said...

Hope the shots weren't too horrendous! Thinking about you all, as always!
Hugs....Debbie W.

Ryan said...

Our son, Ryan, just started the irinotecan and temodar. We go to the clinic the first day and a nurse comes out the next four to give it to him at home. He did great with that. It only works because he doesn't need all the hydration that usually comes with the chemo. The iri. only runs an hour and the tem. is oral. Could that work for ya'll so Max doesn't have to go to the clinic? Also, Ryan does better when he starts with an empty stomach. He had no nausea on those days. Good luck with it! Missy Morgan www.superryan.blogspot.com

Anonymous said...

I have been on Max's site several times, coming from Sam's site. I also have a son, Jeremiah, six years old, who has cancer. Jeremiah gets a prize twice per day whenever he takes his meds. I usually buy his prizes in bulk, a dozen of each at a time. By now (3 years into treatment), I have amassed quite a collection of "repeats," and would LOVE to send a box of goodies for Max to be blessed with after his meds, since it is likely they would be all "new" stuff to him. If you can email me at queens07@windstream.net with a mailing address, I will get a box out to you ASAP.

Praying for your beautiful Max - I love his neverending smile!

~ Sandi Queen (Jeremiah's Mom)

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