Day 22

Friday. A day that used to find us looking forward to happy hour now finds us driving over the Sunshine Skyway with numbing cream, Glad Press ‘n’ Seal, and a new list of questions. We are grateful for each trip. Each little mini-adventure brings us closer to healing, and closer to each other in the process.

Benji started his day with extreme irritability. The prospect of having to share a precious baked good with his brother for his (first) breakfast set him over the edge. While we’ve been trying hard not to indulge this kind of behavior, no matter the reason, we cut him some slack this morning; we knew he was a little nervous about the day. He cheered up a bit once we settled into the All Children’s Hematology / Oncology Clinic. He didn’t have much of a choice; a little boy, about 3 or 4, with no hair and a gigantic smile, whizzed by on a little scooter, right there in the waiting room. He was obviously an old pro at this Friday stuff. Quite a visible reminder that in cancer–in life–attitude is everything.

The hematoma that had formed around Benjamin’s port site has visibly improved. We’ve been applying arnica cream to it nightly; whether it’s the cream, or simply time, who knows. We are just thankful it’s not going to cause a problem with his port. I’ve read horror stories of kids’ treatment plans being delayed multiple times for surgeries to correct port issues. Nope, not here, thank you.

When it was time for Benjamin’s port to be accessed, he was as brave as could be. He remembered last Friday’s victory and actually asked the nurse to go ahead and put the needle in. This kid amazes me. The nurse drew his blood, and when she came back with the results we were shocked–his platelet count was 290,000! That is NORMAL, people. His bone marrow is functioning beautifully. We understand that the next phase of treatment (and subsequent phases) will introduce medicine that will almost certainly bring this count way down again before it’s all over with, but again, every little victory feels huge right now.

We spoke with Dr. Moore a lot today about what the next phase of treatment, called the Consolidation Phase, might look like. Until we get the results of Benjamin’s bone marrow aspirate next Friday, he can’t tell us for certain; but if his marrow shows what the doctors expect, Benjamin will be classified as “average risk.” He’ll have to take a new medication orally for four weeks, and have intrathecal chemotherapy weekly. This will be an intense phase. I started researching the medications last night. I will stop now, until I know the results of that aspirate. It does me little good to worry about new side effects until we’ve gotten through the ones we’re experiencing now. And, we’ll know the results four days before his first treatment of Consolidation, so I’ll have time to read up, and stock up, on anything we can do at home to help him through this.

While we were talking to Dr. Moore, I kept hearing repeated text message alerts. I ignored them until I couldn’t anymore, then looked at my phone. Benjamin had Michael’s iPad on the exam table, about two feet from me, texting away. He was hungry, and ready for all this talking to be over. His autocorrected messages:

“We need to go!!!!!!!!!!”

“Todos for me!!!”

“And chips and solos”

(Translation:We need to go. Tacos for me. And chips and salsa.)

I was cracking up in the middle of this very serious conversation. I apologized to Dr. Moore, and told him Benji really wanted to go have tacos. Benji knew this was kind of a rude interruption, and immediately covered his bases with “I’m sorry Dr. Moore, you can come with us, we just need to go.” Oh, this boy. Attitude is indeed everything.

The doctor left, the nurse returned, the haz mat cloak was donned, the vincristine drip began. Benji rested while the clear fluid dripped. We left ten minutes later for tacos, and another carving of “Benji the Brave” in the clusia hedge. Later, when we picked Banyan up from school, the first words out of his mouth were, “How was your treatment, Benji? What was your platelet count?” So many moments in this day that made my heart pulse a little faster too.

12 thoughts on “Day 22

  1. I am totally blown out by his blood count. The best I have gotten my count since having my treatments 17 years ago, is 140,000. The Lord works in mysterious ways. Thank you Lord! And, love and kisses to a very awesome kid and a great family.

  2. Laura: I’m amazed at what Benji wrote. I don’t think at seven I knew how to write much at all–but I really can’t remember that far back. 🙂 Got a kick out of Banyan’s questions to Benji–how quickly he’s learned the medical jargon.

  3. I am elated to read about Benji’s blood count! Hang in there Benji, Banyan, Laura, and Mike! All our love and prayers continue for you.

  4. Gilkey Family you are all staying on a great path to make “life” as normal as possible. I’m sending only good healing thoughts your way for all.
    Benji you are amazing.

  5. That post brought tears of join to my heart. We’ll pray everything continues to be good. Love and prayers to all you guys.

  6. Our prayers are with you! Sending good thoughts and much love to aid you in recovery. Hope you get better soon!

  7. Thinking of you guys and sending prayers…
    I had forgotten about numbing cream and the Glad Preess&Seal.
    I’m asking God to put his arms tightly around Benji and your family.

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