5/01/2008

Pain Relief

As you know, Max was admitted to the hospital Tuesday night for pain in his legs caused by cancer progression . The most recent treatment that he received 3 weeks ago (irino/temodar) apparently didn’t stop the neuroblastoma, so we are moving on to option 2: velcade/gemzar and adding radiation to his thighs to alleviate pain.

Wednesday afternoon Max was set-up for radiation and received his first of 10 ‘beams’ on his thighs. The fun part of this was Max got to ride in an ambulance for his first time ever from Children’s Hosp up to the UCSD Cancer Center for the radiation. Woo-hoo. He will make the same trip there again this afternoon and again on Friday – all in the ambulance.

When he returned from radiation he was whisked off for an MRI of his spine and a CTscan of his head, chest and pelvis. It’s obvious there is progression due to the pain in his legs; we just need to identify what has progressed since his last set of scans four weeks ago.

As I sat here in the hospital room with Max this morning (Thursday), watching him lie in his bed in pain, pushing the morphine button repeatedly and not feeling enough response, I was taken back to the first three days he was ever in the hospital in October 2004. He was just 3-1/2 years old and in such pain – even with the morphine – that he couldn’t move a muscle without whimpering. Crying hurt too much to do, so he would just whimper. He’s just about 7 years old now and seemingly back to square one. His pain tolerance is high. He doesn’t react to it until the pain is so great that he has to scream and cry. Late yesterday I finally got it through to him that it is not okay for him to have any pain and he should use the ‘button’ anytime he feels it coming on. Sometimes it’s still too late and he has to endure a great amount of pain while waiting 4 minutes for the morphine to kick-in, but he’s coming around to my way of thinking and has the button in his hand all the time.

Following this episode/flashback I asked for the continuous morphine drip and the bolus dose to be increased. Shortly thereafter we added adovan to the mix and saw some nice results. Max watched his favorite Aussie, zoologist Nigel Marvin, in Walk with Dinosaurs and gave an ongoing commentary during the action. He watched part of the show over in Nuc/Med during his bone scan and the rest here in his room. Daddy also came along for the scan which made Max very happy.

I’d like to explain the pain Max is living. Even on a constant drip of morphine Max can’t roll over in bed without waking up, needs the blankets lifted gently off, then slowly and painstakingly he lifts each of his legs a little, adjusts his butt, lifts legs, moves butt, tilts legs, etc… until he’s turned to face the other side of the bed. He moans and grimaces. No one can touch him to help. Having to go pee is excruciation. His pain is such that he can’t make himself go in the urine jug while laying down nor standing. He insists on making a trip to the bathroom which takes about 5 minutes to get from bedside to bathroom (10 ft?). Andy found that having Max stand on top of Andy’s feet to walk there worked well. Max can’t even begin to think about having someone carry him – owie.

He’s not complaining about being in the hospital this time. Mostly he’s slept. Friday I’m bringing Hannah & Nic down to visit him for a little while. He misses them fiercely and will be happy to see them. (Right now - with the pain - Max is not receptive to visitors.)

We’re hoping that the radiation to his thighs will start presenting its effects by tomorrow and we can start decreasing the morphine dose. Once his pain is under control at the hospital and the pain team can identify his needs they will be able to write a home-plan for pain that we can use to effectively control Max’s pain from the comfort of our home. Looking forward to that. We hope to have Max back home sometime this weekend.

20 comments:

Anonymous said...

My heart aches for our litte Max. No one should have to live with that kind of pain... especially a child. If love could make him well we'd have no problems! There are so many people concerned and praying for him. Prayng for that miracle!!

Much love, Nana

San Diego Mom said...

I just can't imagine you and Andy's pain to watch Max. Just thinking about it makes me break down and cry. As I pray for relief for Max, I will always be thinking about you two. May you find a brink of rest and peace during the battle. Let us all hope that there will be no dark nights that does not end. That there will be morning light again and our Max will be smiling again. Shiho

Anonymous said...

No child should have to endure the kind of pain Max is in, and no parent should have to watch their child be in such pain. I'm praying hard that that radiation starts doing its job SOON! Thank you for taking the time to keep us all updated on how Max is doing. He's in our thoughts all the time.
Lori

Joy said...

Dear Max, You are so great and we all want to see you fully recovery.
My daughter-NB fighter from China now treat in Singapore,is greatly encouraged by you. Please be strong.

Anonymous said...

I am at a loss for words. I have been praying and won't stop praying that Max's pain will get under control and stay that way. I pray for the pain that this causes his strong heroic parents also.
Love,
Bree

Randee said...

My heart hurts so for all you continue to endure. Just know many, many people are praying for Max and for you (Andy, Melis, Hannah and Nic). Let God wrap His arms around you and carry you through this time. No one should have to go through this especially a small child and his family. Love and heartfelt prayers, Randee

Donna Ludwinski said...

Dear Max and Team,

I am praying constantly that the pain will be eradicated and the beast causing this will be destroyed...praying very hard for all of you. This is a nightmare to see your brave beautiful boy suffer.

Much love,
Donna

Anonymous said...

How terrifying for you all to have to go thru this... I know Max couldn't have better advocates than you, and I know there are no more dedicated parents than you. Melissa, I watched you at clinic and how you were always interacting/engaging Max. Not one other parent there did that. I know you are doing everything possible to comfort Max. It must be beyond frustrating that you can't just make it all go away. I continue to pray for you all night and day. xolisa

Vickie said...

$%^*! (*&%! Naughty word, naughty words, naughty word. Praying for relief and comfort for all of you and for the new plan to work quickly.

Go Max GO!

VB
erinbuenger.blogspot.com

Anonymous said...

This just breaks my heart.. I pray for more pain relief and soon!!! I pray that the radiation will start working and quick!! I pray for something that works.. for this beautiful boy of yours...

We are thinking about you guys constantly....

rhonda dudley
www.caringbridge.org/tn/sydneymarie

Amy from San Diego said...

Our family knows how painful this is for all of you. Our Angel Delaney is in heaven due to leukemia. We are sending your family prayers for pain relief for Max and for Neuroblastoma to leave Max's body.

The Wright Family in San Diego
Bob, Amy, Kevin, Shelley and Angel Delaney
Delaney's website: www.caringbridge.org/ca/delaney

Anonymous said...

Praying for your family all of the time. Never give up.

mookilatte said...

sending you all owie-free virtual hugs and persistent wishes for NO PAIN.
xox,
mooki
toby's mom

Anonymous said...

My prayers are for Max to be out of physical pain, and back to playing as kids are meant to. And for your entire family to be freed of this emotional nightmare. Words are inadequate to capture the sorrow I feel for you as you go through this.

Peace,

Brian

Kipp said...

I don't really pray so my sister is going to say a Novena for Max's pain to go away. Not sure what it is but I am sure it is some great catholic thing!!! Whatever works right?! Hope that he is home this weekend, the pain goes away, and that we find that missing piece of the puzzle to stop NB. I am thinking about you guys day and night.

Lori said...

You remain in my prayers and in my heart. I am expecting that miracle any minute.

Love,
Lori

Anonymous said...

Hi Melissa & Andy-

Ugh- it hurt to read your update today. It is unspeakably hard to see your child in so much pain- I am so sorry that all of you are going through this. Cool West coast Max (as he is known in our house)'s picture just makes me smile to look at him. I hope that the new meds and radiation get this under control while you iron out a plan. Sending positive thoughts of less pain and strength for you all out your way.
Carrie Jeff & Max Palmer

Anonymous said...

It isn't possible,but I wish everyone could witness
just how our Maxboy has always dealt with life.He
surprises,delights,and stops us dead in our tracks
all the time. There is an inner understanding of
self that is profound beyond his years. Most of
what I have witnessed I doubt I can ever adequately
describe to others. If a child can teach his grandfather,
then,truly he is my teacher.
Said with a heart which is both heavy and filled with
bounty and hope in the same heartbeat
Papa

Anonymous said...

It isn't possible,but I wish everyone could witness
just how our Maxboy has always dealt with life.He
surprises,delights,and stops us dead in our tracks
all the time. There is an inner understanding of
self that is profound beyond his years. Most of
what I have witnessed I doubt I can ever adequately
describe to others. If a child can teach his grandfather,
then,truly he is my teacher.
Said with a heart which is both heavy and filled with
bounty and hope in the same heartbeat
Papa

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