Wednesday, May 8, 2013

Baths Baths Baths {day 3}

I arrived a little before 1pm and Phyllis filled me in on the details. When she informed me that Sam needed three baths a day (not per week, you read that correctly, 3x a day with clothing and linen changes each time) it took everything not to tell her "keep up the good work," and turn back around and drive home. If there is anything that daunts me it is the preparation for and concerns during Sam's baths. I hate the aqua-guards that barely stick to his body and barely keep the water off his central line dressings. The first time, a year ago, I had a nurse put on an aqua guard and it stuck to his dressings. This all prompted dressing change #2 for that day. Not a good day. Now Sam's chemo is so potent it seeps through his pores when he sweats and he needs to be bathed three times a day to prevent unnecessary skin rashes and irritations (yes, that sound you hear, that's me screaming in my head running around like a banshee).

After Phyllis resuscitated me from my state of shock, she proceeded to tell me about all the fun she and Sam had been having in between baths. In the morning, after tutoring, Sam painted with shaving cream. You put the shaving cream on the table and smooth it out. Then you add paint to the shaving cream and swirl it a bit. Then you put paper on top of the shaving cream. You scrape the excess shaving cream off the paper and then let the paper dry. The result is a really pretty water color type painting and an incredible sensory experience for all.

After Phyllis left, Sam wanted the gift I brought for him. I drew in a deep breath, counted to ten and told him he could have it after his second bath. No sense waiting around for the inevitable. Might as well take the bull by the horns, while I have all my best nurses around to help me. Nurse L was busy with another patient so my good friend Nurse D lent a helping hand and some good cheer. 

Sam just chatted through the entire prep time without a care in the world, hopped into the special oil/water combination to wash all the toxic sweat from his frame and get on with his day. 
I let my breath out once he dried himself, removed all the tape and the aqua guard and dressed in his second outfit of the day. It is getting hard to find something that will hold Sam's interest for more than a few minutes, let alone more than a day. I had gotten him a CSI DNA evidence kit that would allow him to build a 3D strand of DNA. Sam thought it was so cool. 

At first we had no idea how to assemble the DNA and the instructions were not all that clear (heck, who are we fooling, we never really found them and sort of just figured it out ourselves, but we looked for a good while).

Once we figured it out it went really smoothly. Sam picked out the genetic pattern from one of the many cards and we set about building it. Sam would assemble the matched proteins and hand them to me to assemble. 

 When we finished Sam commented, "Dad, this seems sort of a game for Mom." 
"Why's that, Sammy?" 
"Well, she's sort of the brains of this operation and you are sort of the creator of fun."

I didn't know whether I had just been insulted, complimented or both. It sure felt like I'd gotten hit going both ways with that one, but I nearly laughed myself silly inside at the thought of those words coming out of his mouth. He's an amazing child, this one. 

Then I tried to explain that DNA is part of what caused him to have leukemia and would also be part of what would help him get strong again. And without missing a beat he took my legs out from me and punched all the breath from my body. 

"It also might be what causes me to die."

I couldn't deny it and couldn't be silent as much as I just wanted to stand there in awe at his insight and understanding. I also just wanted to shed all my tears at his potential truth. 

"Yes, Sammy. That's true, but you've been so strong so far I believe your DNA will help you get better. Besides you promised after all the times in the hospital having to wipe your behind that you would help change my pull ups when I'm 95."

"Ug, Dad, do I have to?"

"You promised. Maybe if you're lucky I will still be able to do it myself."

"I sure hope so."

Potty humor will lighten up any deep and dark conversation. Thank God for potty humor. 
I felt like the loudest sound I heard all day was the screaming in my head. But the sound that drowned it all out was the sound of cool, fresh ice water running through Sam's veins as he takes this all in stride.

"It's six. Shouldn't we be getting ready for my third bath? We should probably swish while I'm in the bathroom too." Who is this child? I swear he's a thirty-year-old man caged in a seven-year-old's body. When we finish each bath he's a pro at calmly peeling the tape and aqua-guard from his skin, drying off and carrying on with his day. I am in awe.

After dinner we played with the really cool magnetic dart board a friend had brought up. We had fun and Sammy practiced his math skills. I looked for a good dart score app on my phone but none of them got good reviews. This made it a little hard to play to higher than 100 or to teach him how to play Cricket, but we had a really good time nonetheless.

Afterwards Sammy ate two more orders of vanilla yogurt and cheerios (sorry, folks, I think hamburgers are out for a while). It's only day three. Who knows what hell we'll face in weeks two and three? I still have my amazing son to cherish. He's still his happy self as all these chemicals drip into his incredible system. He still shines from a light that burns so brightly deep within him. He admitted today to one of the child life specialists that he likes it here because he doesn't argue with his siblings. It's scary to think that this place has become a safe place for Sammy. On the other hand I am so glad that this place has become a safe place for Sammy, because we have to be here a lot and he might as well enjoy this alternate reality if it is his dominant reality for quite a while. Sammy teaches me so much each day. 

Thank you all for your blessings and love. We couldn't get through this without you all. You all help our strength equal Sam's incredible inner strength, and for that I am eternally grateful. 


  1. Thank you for sharing Sam with us. He is a great boy. I love his insights. I love his attitude & humor. Sam (& his parents) are teaching us many lessons and I am grateful you are willing to do that.

    I wish you weren't going through this....since you are & since you're making the best of a bad situation, I am going to look forward to further reports on what food is next the fave. And what will be the next game/activity to keep Sam entertained.

    May you know peace & joy amid the strife.

  2. I go to read about Sam each night before I go to bed. What a magnificent person he is becoming through this ordeal he's going through. I'm learning from a 7 year old and that's a blessing. He's a blessing. Thanks for sharing, Michael and Phyllis. My love and prayers are with you, Sammy and the kids.


  3. I am in awe as well! Sam's attitude and outlook about the whole experience would be remarkable for an adult, much less a 7 year old . I have to believe what you are seeing is also some reflection of the love and way in which you are there with him and for him. The sheer strength of spirit and self that it must take is beyond my comprehension ... thank you for sharing your stories -- I'm learning here too. We are all sending love and light etc ..Prayers are with you all, thinking of you often.

    Stephanie + Kerches

  4. You are ll amazing! I don't know how you do it. My heart goes out to you.

  5. Three baths a day because his sweat has become toxic -- good God. Sometimes it's hard to believe that these are still our best methods for fighting this thing. And yet, they are, and I'm grateful that he's getting such good care and that he's taking everything in stride.

    The story about building the DNA molecule, and Sam calmly pointing out that DNA is also what might cause him to die, is incredibly powerful.

    His light shines so brightly. I can see it through these posts, always.

    Blessings to all of y'all.

  6. What an amazing kid. Love and prayers to all of you.

    (And you are a terrific writer. No dearth of talent in this fam!)

  7. Wow. You are all so amazing and inciteful. Can't help crying sometimes as I read this.

    Much love

  8. You probably already know that, but be careful to diet.
    Eliminating White sugar for instance (industrially refined, pro-inflammatory) can help the body heal quicker. Food can truly make a difference.
    Get well soon Sam!

    P.S. I wrote because I have some experience in the field, affiliated with oncologist Umberto Veronesi

  9. Sam really is a special guy. I want you all to home again together and this all behind you. Let that day come soon.

  10. May G-d give all of you strength and health.
    Kids are much more pragmatic and accepting than adults.