Week Thirty

Two words can sum up the week: visitors and nausea.

The visitors came almost daily which helped since Robbie remains in the stasis between surgery and resumption of full chemo. The week kicked off with Kate still here and was joined by Uncle Jim and Aunt Jen. As usual, Father Sam made a Monday appearance and then throughout the week, various pals from Fairfield came to see him which was terrific. His first 7-West nurse, Tonetta, also made a surprise visit which cheered him.

On Thursday, he was visited by one of his teachers from the Aquaculture school, Ms. Ebmeyer who brought along three of his classmates from the magnet school. It was there he really began his interest in piracy. The class, which every week went out on a boat for marine biology, dubbed themselves the pirates and it stuck.

The other part of the week was Robbie feeling constantly unwell, mostly with rounds of nausea. As a result, each day was like a constant cycle of anitemetics from Benadryl to adavan to kytril and back again. None seemed to be doing the trick and it persisted and seemed even worse yesterday. We spoke with the resident who tried compazine which seemed to help a little. Still, constantly feeling unwell seemed to be taking its toll and Sarah, one of his nurses, commented she saw this evolving as well. He was most certainly not like himself when she cared for him on Thursday. Jess and Nichole both suggested marinol, an antiemetic made from marijuana.

This morning this was tried and we’ll see what happens and what the oncology team thinks is the cause.

Meantime, a CT scan earlier this week showed three spots in his lungs that the surgeon continues to think is blood. That the spots have not changed size or shape three weeks after surgery is the puzzle so a repeat CT will be done on Monday and then we’ll see what happens. His blood counts finally recovered this week but with his lungs still in question, it was decided to resume the holding action chemo, etoposide, before moving to the full chemo. He did endure another bone marrow biopsy yesterday which should also help direct next week’s actions.

So, we make him comfortable. He watches TV and takes walks. We’ve gotten him back to reading, setting aside time each day and he’s now into Ender’s Game. We get him to eat when he can but he’s thin and what little hair had started to return is now falling out. Fortunately, he continues to deal with this with a tremendous amount of strength, remaining a good a patient and a terrific example to the rest of us.

9 comments

  • Alan Coil

    I was recently taking medication that caused daily nausea. I tried Ginger gum, which worked okay, but the effects didn’t seem to last very long. Then I tried Crystalized Ginger. That worked better. Both are available at health food stores. But remember to clear its use with the doctor beforehand.

  • Bill Mulligan

    I second the suggestion for ginger. I’m sure the doctors are aware of it, it’s one of those old wives tales that actually seems to work. I would use the actual slices of ginger, as one might find with sushi (which, converesely, is NOT a good thing to eat if nauseous). Ginger ale probably has no actual ginger in it so any effect it has is probably just placebo effect.

    I sure hope he feels better. It’s an awful feeling and he needs his strength. You’re in our thoughts and prayers.

  • Beth

    I’m sorry to hear that Robbie has had such a rough week. I will continue to keep him in my prayers.

  • Tim Lynch

    Best wishes to Robbie, as always!

  • I’ll chime in with the ginger suggestion. Candied ginger is both yummy and excellent for nausea. Ginger ale, while it doesn’t have HUGE amounts of ginger, has the added benefit of calories as well as the tummy-calming. Sushi ginger has vinegar, and might not work as well as the candied ginger.

    If you have trouble finding candied ginger (health food stores, fruit stores that have a wall of those plastic boxes of nuts and dried fruit), let me know, and I’ll send up a box.

  • Laura

    Hi, I heard about your son’s need from Alison Hyde’s blog, via Ravelry, a knitting community. I know it’s beyond an extreme longshot, but thought it was worth reaching out anyhow. My HLA type is
    DNA-A 01CDRF,01CDRG DNA-B 08AKNJ,57AG DRB1 0301,1305
    and I’m in the Caitlin Raymond Int’l Registry for bone marrow donation. (I don’t know how well the registries coordinate, so I thought to share the info directly.)

    Perhaps posting his HLA type on your site may help find a donor.

  • James

    I thought they were all connected (country wide).
    If not, I am registered as well.

  • I know of two brands of ginger ale – or close to it, as it’s actually got ginger in the formula: Santa Cruz Organic Ginger Ale, and Bottlegreen Ginger and Lemongrass Pressé.

    I hope that helps, not harms…