Security is a SpongeBob toothbrush and a 75 cent night light.

The circumstances of our life are unusual to say the least, and I know that people wonder what life is really like when there is so much to “get through”. Here is a window to let you see inside a little bit. I’m counting on you to please not bring any of the details of this little story up to Jeffrey. I don’t think that he would mind me writing about it, but I’m sure he wouldn’t want to be asked about it.

When I was first diagnosed in 2007 Jeffrey was 7 and turned 8 while I was in the hospital in July of that year. At the time none of us were really sure about how he was processing all that was happening to him and didn’t really know how much he understood about what was going on with Bill and me. Sometimes he seemed a little sad or scared but he didn’t talk about it much and seemed to be handling things fairly well.

I was in the hospital for most of July and at least 10 days in August, and sometime during that time, Bill threw out Jeff’s Spongebob toothbrush. Ohhhh myyyy…Jeff was so upset…heartbroken, truly heartbroken is the only way to describe how he reacted. We thought he would get over it, but he never did. For months we looked everywhere for a replacement, but of course could never find exactly the right one.

For many months afterwards, whenever Jeff was very very sad, like something was hurting his heart, he would say “You know, mom, sometimes I still think about my Spongebob Toothbrush.”

Lightbulb moment. All of Jeff’s sorrow and pain and fear and sadness were expressed through the loss of that toothbrush. Aren’t kids just amazing??

This fall he has started taking a Karate class at our local Wellness Community called “Kids Kicking Cancer” which is like Karate therapy for kids who have, or whose parents have cancer. It is a phenomenal experience for him and he loves it and is the LOUDEST “AYE-YAH” in class. It’s not just Karate, there’s a lot of dialogue, and it has been a great outlet for him.

However…yesterday we overhauled his room…He was working with me for most of the day, but at one point I replaced his 75 cent night light with a new “LED” night light. When he realized this several hours later, it was the Spongebob toothbrush all over again. We told him it was a way cooler, blue light that was more energy efficient but he wasn’t buying it. He was devastated and said, as dramatically as you can imagine, “You threw out a perfectly useful night light that has been in my room since before I was 3.” Heartbroken again. Now there’s probably about a million great ways I could have helped him talk through it in a way that would have brought the emotions full circle. Instead I reminded him that we had just found the bear that had been in his crib since we brought him home from the hospital (the baby store). When he came downstairs a few minutes later clutching the bear and his eyes full of tears, I went out into the garage and dug through the trash until I found the nightlight. Screw energy efficiency. He was still holding onto that bear when he woke up this morning. So there you go.

Bill is doing ok. Last Friday he completed his 12th round of chemo. 12 rounds (not 12 days, 12 rounds which means 36 days of chemo) of the kind of chemo he’s been getting is just remarkable. Most humans could never tolerate this level of chemical assault, but Bill just keeps taking the bad medicine and (mostly) telling the docs to bring it on. And still remains patient and accommodating and except for chemo week, he is stronger and has more energy than I do! But it is getting harder each time and this last round we had one episode of passing out, a very little seizure and a fall down the stairs. He seems to have recovered, has returned to work and tells me he is “fine”. Ok, sure.

What happens next is anybody’s guess. He has a scan scheduled on the 3rd, an appointment to meet with Dr. Stella on the 8th and, much to Bill’s displeasure, another round of chemo scheduled after that. Usually they just do 4 rounds at a time (what we just did) but as long as he’s still standing the plan is to keep on going…at least for one more round. However the results of the scan could change the plan and there are lots of different possible scenarios. The cancer could be gone; it could be unchanged; it could be the same size and location but less dense (which is what it was last time); or it could have grown. And each scan possibility has it’s own series of possible actions that could be taken. But we won’t know until we know and that is enough for us for now. The waiting is always the worst part of this whole process but I think we’ve actually gotten used to it and have learned to not try and anticipate what is going to happen next.

I can tell you that Bill doesn’t want any more chemo. But he will do what he needs to do.

We get through all of this because God gets us through it and because so many people are so kind and generous and caring. Many thanks for all of the prayers, great t-shirts, cards and meals.

Please keep praying for healing and for a little of Jeff’s Karate motto..

“Power-Peace-Purpose”

and may no-one pitch your Spongebob toothbrush or your 75 cent night light;)

Advertisement