Friday, June 18, 2010

Grandma's Observations

I (Grandma Murdock) have had the chance to spend the last 2 weeks with Will and his brothers at home and at the hospital. I don't profess to be as witty or spiritual as Julie in her posts, but these are things I've noticed yesterday and today that have prompted poignant feelings.

Yesterday was a day filled with childhood fun at home. It began when a family friend dropped off squirt guns for the four boys at home- a fun way to be active and cool on a warm Folsom morning. While enjoying splashing bare feet on wet cement and the hose soaking warm puddles on the lawn, (isn't filling squirt guns at least as fun as squirting them?) I knew that this particular creature comfort was one Will would enjoy if he were at home. Chemo has made him hot and sweaty from time to time-a symptom I can fully understand since it is a side effect of my own post-cancer medication. Little boys should not have the same intense hot flashes as a 60 year old grandma!

A friendly neighbor often shares "kid stuff" with the Murdock boys, some of which are second hand or "found " items. Such was the case yesterday when, much to their delight, he gave them a grotesque-looking rubber mask with black gorilla-like hair. What 6 year old boy wouldn't delight in "morphing" into a weird looking warthog creature with black hair, hoping to freak out Grandma? (or any other passersby?) To my credit, the appearance of Clark's monster face was only startling. I was, however, more grossed out when I thought about who else might have breathed and sweat in that mask prior to Clark. All the boys have had the importance of not sharing germs drilled into them, with even more urgency since William's white cell blood count bottomed out recently. So it didn't take much coercion to get Clark to toss the monster mask. Good thing yesterday was garbage day-it didn't permit any second thoughts for the boys at home. Will is facing a scary monster too, but one not so easily tossed aside.

When the squirt gun craze diminished, and the temperature rose, I broke out the ice cold lemonade on the patio. If you know Soren at all, you know that he enjoys crunching ice, but only crushed, not in cubes. (Any piece deemed too large was thrown into the flowers to water them.) Brows and heads were cooled by the lemonade and the appearance of a cute 4 year old girl from next door who came over to play. The boys and Brooke went inside to the playroom to play dress-ups.

Unsatisfied with the choice of dinosaur, cowboy, transformer or ninja costumes, Brooke ran home and returned quickly with her pink Minnie Mouse ears and a silver princess purse. She was deemed the queen a bit later when the troupe moved to the trampoline outside. Her job was to choose a winner in the trampoline contests. Envision this superhero assortment-Clark was a ninja turtle, Cameron was a Bumblebee transformer, Nathan was Batman with mask and cape, and Soren as a "thoopah tigah" in a furry tiger costume. Their antics and gestures again reminded me of William. Clark's ninja bandanna around his forehead somehow emphasized his facial resemblance to Will, as did Cameron's long legs in his costume. These boys' energy and super presence underlined Will's absence from the group, and his limited energy.

Another favorite pastime of the boys yesterday was playing Legos. Spurred by many gifts of Lego sets, including a large Lego Space Police Station Will got when he was discharged from his initial hospital stay, the younger Murdock brothers have been busily building and re-building their own creations. William's large and impressive space station has been placed upon the pool table, within tantalizing proximity of 8 smaller and more impulsive hands. While I don't want to portray myself as having legitimate Lego building skills, I have developed my Lego policing skills. I can recognize tiny pieces on the floor from a distance, even amidst the carpet loops. I have also honed the skill of reminding the boys which pieces/vehicles are theirs to own and dismantle or reassemble. A finished Lego project is the result of many steps and multiple unique pieces. Another reminder that Will's recovery project will be long and carefully scripted. Every Lego project has some unexpected pieces that fall off, and need rebuilding, even with skilled attention. Such is the case with this last bump in the road for Will. We cannot wait for Will to return home to be annoyed temporarily with his brothers for crashing some parts of his Legos, and then enjoying rebuilding.

Although Julie spent yesterday, and the previous night and day at the hospital with William, she was organized and well-prepared to leave this morning with the other 4 boys to attend the annual Bennion Balboa Bash (family reunion at the beach). While Will's mom, brothers, Bennion grandparents and many cousins romp, play and laugh together, William continues to realize that fighting cancer is no day at the beach. It was hard for us to hear Will say, upon his re-admission to the hospital, that life, after all, is not fair. Knowing that she and the other boys will not see William for the next week was hard for Julie. The absence of Julie and the Folsom band of brothers will feel strange to me and Ryan. The visible presence of boys loving each other and having fun is a comforting distraction. Julie is better at making Will's favorite foods at home, and getting him to eat his un-favorite foods at the hospital. But sensing the love and support across the miles from family and friends has been something we all have felt. Cards, e-mails, blog comments, calls and prayers all contribute to our sense of well-being, despite someone who is a good boy, and special to so many, is fighting an illness that is so difficult.

So much for my musings. Here is a more concise version of William's day at the hospital today: William's temperature continues to decline, but he must be fever-free for 24 hours prior to discharge. Hopefully that will be sometime tomorrow. His white blood cell count is also on the rise and his culture is expected to come back negative for an infection (the other 2 conditions needed for discharge).

William now is the proud owner of 13 Nintendo DS games, due to the generosity of many friends, including the 6-yr old grandson of a friend of Ryan and Julie's who brought a new baseball DS game, a homemade card, and 16 cents in a baggie to give to Will.

Will's tendency to run his fingers through his hair and twirl it between his fingers has prompted a suspicion that he may be beginning to lose some hair. There is still plenty on his head, but he had to get out of bed twice today to brush it off his shirt and neck- it was itchy.

His gums are quite swollen, and he has mouth sores from the chemo. Eating is painful, but is helped by swishing a pink liquid which soothes and cleanses the sores. Grandma Bennion's gift of a new watch with an Indiglo face (self-illuminating) helps him be independent to time how long he has to swish and gargle. In general, he knows the drill, and is a well-informed patient.

Speaking of which, William has to measure input of liquids and urine output. He proudly announced to me this morning that he had set a new record for his output- 625 cc of pee at one time! See what an IV drip and too many "vitals" questions do for an 8-year old?! He has had aching legs and muscles which respond to stroking, massage, and Tylenol.

William's ability to multi-task has increased through his stay at the hospital. He can simultaneously watch cartoons, play a DS game, have his blood pressure taken, and drink at Grandma's urging all at the same time. He is still refusing most hospital food. Thank goodness Gatorade is not just for athletes, and there is a McDonald's and a Jamba Juice between Ryan's office and the hospital! Also, yogurt at the hospital does come in a flavor that Julie buys at home.

And lastly, one of the programs here is to give children who are fighting cancer Beads of Courage-a bead to commemorate each of the various steps along the way to recovery. Today Will got 50-yes, FIFTY beads due in part to 15 sleepovers in the hospital, for one thing, and various other milestones, such as surgery and chemo. We have a brave good boy. He has brave, good parents. It's been good to be beside Will today at the hospital, and not just because it's been a more sedentary day than the last two days at home with his four little brothers!

4 comments:

  1. Thanks for the post, Remae. We've been following the blog intensely since Ryan sent the news to Marsha.

    I'm impressed by Julie's prescience in naming the blog, but more impressed as I read the posts to see that the village is showing up in force! I hear those doohickies really hate love and laughter! And squirt guns, DS games, and pizza. Tell Will I'm having a hot dog for breakfast in his honor.

    Thank you Julie and Ryan for having the strength to share this struggle so intimately. And so publicly. God bless you guys!

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  2. Hi Grandma Murdock, We were friends w/ Ryan & Julie in Austin when they were in graduate school..what a great couple. I am so glad you are there to help. I just wish we lived closer and could do something. I must think of something clever to do. What a hard battle for William and the whole family. You are all very courageous, and so glad that Julie and the boys could attend the family reunion. That is just the boost they all need. We are praying very hard for all of you.

    Love the Jones - Nancy & Jerry

    p.s - I look forward to reading the blog every day.

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  3. Great post grandma! We love ya & hope to see you soon! Horray for William our worrior! Beat it down Will! Great job peeing!

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  4. Joe and Maude NagleJune 19, 2010 at 8:57 AM

    Remae,
    What a compelling delight to read your posting among the others. Know that William's journey has become our own precisely because its twists and turns are shared so eloquently. We will continue our prayers and offer our work, joys, and little sufferings as a part of that prayer for William's eventual recovery.
    Fondest regards,
    Joe and Maude Nagle
    Aunt Hilary's mom and dad

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