Experiment 626

Robbie completed his second spinal tap & technially 6th round of chemo this week. He beasted through it like a... Well like a Zuel beast. We have not received the results on if this larger specimen shows cancer cells yet, but we feel hopeful it will not.

His doctor informed us that because Robbie is responding so well to his chemo treatments, if his platelet and hemoglobin levels remain consistent he could be released as soon as next week.

We hope everything goes as planned so he can be back home with us. We are anticipating that his new treatment schedule will be lots of appointments and medications to come.

It feels like we’ve been living in a dream maybe even a nightmare you could say, and it has been difficult to accept and adapt to the fact that he cannot do the normal “dad stuff” he’s used to. Chasing, playing lions, rough housing, cleaning, and pretty much anything that will bruise him or strain the giant muscles he’s grown from the 3 well balanced protein packed saltless gourmet meals he eats, the daily handfuls of medication/vitamins (aka happy pills), & the exposure to “radiation” that we think has possibly mutated him into an X-men. Until his hemoglobin and platelets become stable he unfortunately can bruise easily. Recently tape covering his Picc line bruised his arm while platelets were low.

All in all despite the initial shock and fear of being diagnosed with this illness, it actually has been kind of break for someone who always takes care of others. All I hear from his friends/coworkers is how much Robbie takes care of them & it’s time for Robbie to let everyone involved take care of him.

Robbie has experienced some hair loss which is expected and very common. He chose to finally shave his beard because he noticed hair in his mouth while he was eating, pinched the side of his mustache, and a huge chunk of hair just fell out. This was a little alarming, but we did laugh when he shaved half of his beard and left half of it for a picture. Robbie has gained weight due to the consistency of three meals a day at the hospital. It’s been a didfixukt realization that he has cancer in his marrow and throughout his blood. I was in instant shock the moment we were told this was the reason he had had been so ill. I had to google leukemia & almost fainted at the sight of the word “blood cancer”. From personal research and all of the information we’ve been given from his physicians & people reaching out who have been affected or know someone affected with leukemia we’ve learned so much. Especially learning about how far technology has come specifically with gene therapy, which is being discussed as a possible option of treatment for Robbie. We’ve learned although gene therapy is still considered to be in early stages of clinical trials it may someday be considered as an actual cure for some cancers in particular ALL.

I’ve learned first hand now how much cancer makes people rightfully uncomfortable. Just the word alone is scary for one and then what most people associate with cancer are the negative outcomes and brutality of the disease and that’s ok.

We’ve decided Robbie’s mascot during his leukemia journey will be stitch from the Disney movie Lilo and stitch. We’ve always liked that character/movie and we used to have a family dog (Tank the shih Tzu) that reminded us of stitch because he had a big mouth full of teeth he wasn’t afraid to use before he matured into the goodest boy ever. Our daughter has recently become, for lack of a better word, obsessed with stitch this last year. When we realized Robbie’s room number was 626 we decided Stitch would be the perfect mascot for him and have been collecting stitch themed things for Robbie as he is truly experiment 626 now.

Robbie talks about McDonald’s a lot. I don’t think he’s going to be able to eat much McDonald’s anytime soon and I’m not sure that should be something he consumes in the future unfortunately. Not eating McDonald’s, aka “Nonald’s” to Robbie and his nephews, makes Robbie sad, he loves “Nonald’s”. We often play and laugh at the song “Rock ‘n’ roll McDonalds” by Wesley Willis. Robbie said he would like that song to play while he “Rock ‘n’ roll McDonald’s out of here” once he’s released.. I told him I’ll rock ‘n’ roll McDonald’s him down to In-N-Out once his immune system is better but I’m not sure about McDonald’s. Robbie is on a strict diet due to having no immunity right now he can not have any fast food and fresh vegetables can potentially make him very ill. Everything must be fully cooked and served fresh/hot.

I have had difficulty eating due to nausea and forgetfulness.