up and up

When undergoing chemotherapy, there is the time during which blood counts come all the way down–practically to zero–then the waiting period for the counts to come back up. We have been in that waiting period, and now, Caemon’s counts are beginning to rise. He has not needed a platelet transfusion, or any other blood product, for over a week now. His platelets are rising on their own and are over 70,000 now. His white blood cells continue to rise as well, and those neutrophils are slowly creeping up.

We have been told that once his neutrophils are up to 200-300 (they’re 50 today), we’ll get to go home for a few days. We’re beginning to believe this, and while he may still throw us a surprise with an infection or other unexpected turn, we’re really looking forward to it. For now, we continue to wait for his counts to rise, try to keep his spirits up, and continue talking about all the things he loves about home to prepare him. He is enjoying stories about the trash truck, about baking muffins, feeding the cats, and sleeping in his own bed. It all sounds positively beautiful to me. We’re keeping our fingers crossed that it really happens.

Once we return from home (we will only be there a short time), Caemon will get a Broviac catheter. This is a type of central line that will go into his chest and into one of the veins near his heart. It will provide a more permanent site for blood draws and for IV fluids and medications, and it’s less likely to be a source for infection. Currently Caemon has two PICC lines–an IV on each of his upper arms–which are cause for quite a bit of annoyance, so while this is a bit of a big, scary step, it is also something that is going to cause him so much more comfort and freedom with his arms. He will also have another bone marrow biopsy when we return to determine where his disease is and how many more rounds of chemo he will need before transplant.

So far, his weight has started to rise as well. He lost a bit since I last wrote, but it’s up again, and he has been eating well. His diet consists of a good deal of butter, olive oil, and cream/sour cream and vehicles for these ingredients, including nachos, baked potatoes, pasta, oatmeal, and anything else we can entice him to eat. We have also discovered some very high calorie shakes the kitchen will send up. He sips on these throughout the day. I cringe at how few fruits and veggies he eats, but honestly, our primary focus is to make every bite he eats as highly caloric as possible. Lucky boy! We’ll get back to better nutrition after the worst of this is over. For now, we need to fatten the boy up because the transplant process will most certainly result in some weight loss.

It seems that as Caemon’s counts are rising, his spirits are lifted as well. He is enjoying literally hours of his medical play. He has perfected the procedures of heparin-locking an IV, saline flushing an IV, and more. All the little pieces of these tubes that fit together are endlessly entertaining to him, much as legos and erector sets might be, so when I start to worry he isn’t playing, I have to remember that he’s got quite a sophisticated set of toys in his medical supplies, and I needn’t worry. He is learning so much: he’s gotten his numbers down now by helping to program his IV meds, he is working on vocabulary (and will have no trouble if he opts for medical school or pharmacological studies), broadening his social skills, and exercising a whole lot of patience for a child his age. We miss having him in preschool, but we are fully aware each day that children his age will learn anywhere, and because of his endless curiosity, Caemon is regularly schooling himself, making all who enter his room his teachers. I’m oddly proud to hear my child pronounce drug names like “Cephapim” and “Allopurinol.” There is something equally charming and very sad about it all.

The tone around here is largely positive these days, though. His primary oncologist has been paying him visits this week, and she is more happy than we have seen her before with his new progress. Yesterday, she showed Jodi and I a photo of a little boy who has survived JMML. He is three years out and doing beautifully. He looked a bit like Caemon. It was such a good reminder that there is another side to all of this, and while we still have Everest to climb with the next rounds of chemo, the “conditioning” chemotherapy, the transplant, and the recovery, we’ve already started the ascent. The path ahead is steep and scary, but we’re getting there and have so much to look forward to.

One foot in front of the other, they say. One foot in front of the other. We’ll get there.

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8 thoughts on “up and up

  1. poppycat

    I have my fingers crossed that you are homeward bound very soon! I’m so happy to hear things are a little bit brighter right now.

    Reply
  2. Laurie

    Im so glad for every glymps of sunshine that goes ur way. My daughter is on a feeding tube for being underweight, on walmart.com u can order benecal. It is 360liquid calories that u can mix in all his favorite food. Its made a world of difference in her weight gain, without making her eat rediculous amounts of food that she just wont due. Just a thought, u might look into. Sending tons of healing prayers!

    Reply
  3. Leslie

    This is such fantastic news! Dr. Caemon sounds wonderful, so glad he is hanging in there and things are a bit better. Home will be so sweet for all of you, keeping you in my positive homeward bound thoughts.

    Reply
  4. Susan Rensberger

    Hi, you don’t know me, but I’m Liz Erickson’s former stepmom, which is how I come to be following Caemon’s story. I wanted to tell you that when I was very sick earlier this year and my immune system shot, a friend recommended that I buy a juicer and make green juices. It sounds yucky, but I sweeten them with honey and cinnamon, drop in an ice cube to chill them a bit, and they’re yummy. And incredibly energizing, and helped restore my immune system. I make them with spinach primarily, some cilantro and parsley, an orange and sometimes carrot. I also use watercress and ginger, but those are spicy and Caemon might not like them. You could use any fruits and leafy green vegetables, which he would probably love to help choose. I whisk in honey and cinnamon at the end, plus a raw egg yolk (though in the U.S. the doctors might frown on raw egg yolk), which makes the drink creamy and adds a lot of nutrition and some calories.

    Reply
  5. Helen

    Great to hear that Dr. Caemon is having so much fun practicing his medical skills…he will be more than ready for any medical school that he chooses someday. You will all get over this huge mountain…one day and one step at a time. Caemon is amazingly strong and I truly believe that he (with his mommies by his side), is going to get through this rough patch in his life and come away even stronger for it. Sending all the best to you guys!

    Reply

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