Day 39

Day 1 of Consolidation. We were at All Children’s much longer than we expected, but Benjamin’s first day in this new strengthening phase went extremely well.

The effects of the dexamethasone continue to wane. At check-in, Benji’s weight had finally started to show a slight decrease back to normal. And despite the fact that he couldn’t eat today for over seven hours after waking, he was happy and having fun all day, with only a couple of non-whiny “I’m hungry’s” throughout the wait.

We were greeted in the exam room by Sarah, one of our favorite nurses. As she prepared to access Benji’s port, we met a new oncologist, Dr. Lee. His perspective was open-minded yet conservative, encouraging some of the things I’d researched, and suggesting saving other efforts until treatment is over. Each oncologist has shown his or her strength on their team. We are satisfied with their approach and appreciate their obvious extensive collaboration about our boy.

After our consultation, Sarah prepared Benjamin’s port for four days of being “accessed” at home. It is another new challenge for our physical family. We have to make sure this area stays protected and the bandage stays secure. Because we’ll be at the hospital for four consecutive days, it’s safer to keep him accessed and risk a bump at home than to insert and remove four separate needles and risk infection. He’ll be de-accessed Thursday. It’s a little nerve-wracking, but so far, so good.

Next was a complete blood count, our first since the bone marrow aspirate. Benji’s platelets remain normal and healthy. His absolute neutrophil count (ANC) had gone down considerably but was nowhere near neutropenic range. This is something we’ll have to watch out for in the coming weeks, as the medicines he’ll be getting in this phase are designed to suppress his marrow.

Three of this week’s medicines are entering Benji’s body for the first time. Today he got his first dose of Cytarabine, or Ara-C. One common side effect of this medicine is nausea, so nurse Sarah prepared Benji with a preventative intravenous dose of Zofran. After every medicine administered through his port, the line has to be flushed clean with saline solution. Today, Sarah offered Benji the chance to flush his own port. He didn’t hesitate a bit. He loves to be given any ounce of control in this situation. I do too.

We waited for the chemo medicine for quite a while. This was frustrating, because it’s all a domino effect: the chemo couldn’t be ordered until the physician reviewed the blood count, and we couldn’t go down to surgery for Benjamin’s lumbar puncture and intrathecal methotrexate until the chemo had been given. We understood, and ultimately we are grateful for their thorough procedures. It just made for a long day for our very patiently hungry boy.

Finally Sarah came in with the cytarabine, a clear chemo medicine in a tiny vial. It dripped into his veins over the course of fifteen minutes. I kept watching for signs of discomfort. Nothing. Both Sarah and Dr. Lee said that most kids don’t feel really poorly from this medicine until they’ve had three or four days of it, and that some kids ride through with little to no ill effects. Here’s hoping.

After Benji flushed his own port again, Sarah cleared us to head to surgery. Once we got to pre-op, Michael kept Benji occupied by adorning his legs and feet with beautiful “tattoos” while waiting for the anesthesiologist. My boy loves his brilliant daddy so much. With us having to visit the clinic so frequently these next few weeks, Michael will have to forgo some of the less serious appointments soon. I know it’s hard for both of them to think about. I think they each make the other feel stronger.

Benji went back to surgery for his lumbar puncture and second of three medicines for the day. He wasn’t at all scared. He watched the anesthesiologist do his job, and looked up at me with happy eyes, asking, “Can I go to sleep now Mommy?” I was relieved to see Dr. Oshrine in the surgery room. I left feeling confident that Benji was in good hands.

I went to meet Michael, who had been handed our buzzer, one of those round things that vibrates and lights up like when your table is ready at a busy restaurant. He handed it to me and went to get us two coffees. He returned and we waited together, starting to worry after nearly an hour with no buzzing or flashing lights. When they finally called us back, Benji was wide awake and sparkly, eating saltines and drinking an apple juice box. Everything went perfectly during the puncture, and we were sent home.

The final new medicine of the day was mercaptopurine, or 6MP. This one also requires a slight change in lifestyle, as we have to be sure he takes it at night, two hours after his last bite of food. Some nights we’ll eat earlier dinners, some nights we’ll have to wake him up. We’ll roll with it. He’ll take this medicine orally at home for two weeks. Both the cytarabine and the mercaptopurine scared me with their newness, and with their illustrious side effects on the internet. But Benjamin felt terrific all day long. I’m learning not to have any expectations along this journey.

Tomorrow Benjamin will get another new medicine, one that will keep us at the hospital for a good seven hours to make sure he’s adequately hydrated. We’ll be thinking of Banyan as he receives the Gold Principal’s Award at school, grateful that our family can be there to support him. We’re grateful for the friend that picked Banyan up today, grateful for the friend taking him to school tomorrow, grateful for the delicious meal that was delivered tonight, grateful for the fresh eggs given to us as we came home. There are so many people making this road as smooth as they can for us. Strengthening us. We never lose sight of that.

4 thoughts on “Day 39

  1. It’s unbelievable what you and Benjie are going through. But then again I don’t know of anyone who has written about the details as beautifully as you do. I wish you strength in the coming weeks.

    Your write-up made me wonder how the doctors and researchers came up with this lengthy, complicated regimen involving so many meds. We are all grateful that they did. In another earlier time, none of this would have been available.

  2. We are so amazed how blessed you are with words! You make everything so clear & in such detail. Thank you, as we all want to be kept informed. You are always in our prayers–what a special family! Love you all!

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