First Day of Chemotherapy

First day of chemotherapy was much better than we thought! We are so thankful for that! We met Dr. Mark Fluchel, an oncologist at Primary Children’s (and an “expert” on LCH). He was wonderful! He spent a lot of time with us answering all of our questions. I will try to be brief and basic.

Benjamin’s chemotherapy will be a “mild” regimen. He will receive a chemo drug called Vinblastine via IV every Wednesday. This is in combination with Prednisone, which has the worst side effects of the two. I have to be the mean person and administer that twice a day, orally at home. They have said that his side effects will mostly include an upset stomach, irritability, and difficulty sleeping. (Most likely he will not have hair loss! YEAH!) He will have the puffy face soon and that will probably last the first 2 months or so. This will be his routine for the next six weeks (although they will wean him down on the Prednisone after four weeks).

After the six weeks, they will order another CT scan to recheck the lesions and growths. If there is improvement in the lumps on his skull AND the spots in his lungs, they will have us come for chemotherapy only every three weeks for the rest of the 12 months instead. The Prednisone will be for five days only during those three weeks- I am sure that will be a relief. If there is no improvement, then they will change the chemotherapy to stronger medicine.

We will continue with a few more tests as previously planned. The MRI of his brain will still be this Friday (Oct. 15th). Then next Tuesday, Benjamin will have a permanent (for 12 months) port placed in his chest so he doesn’t have to be poked for a new IV each week. At that time, they will also do a bone marrow biopsy to check and make sure his bone marrow is free of LCH. Then Wednesday will be his next chemotherapy treatment, which will be quick. The infusion itself was only maybe 30 mL and the nurse injected it all straight into his IV. It took maybe 1-2 minutes to give- much less time consuming than we were originally told. Yeah!

A few quick things about Langerhans Cell Histiocytosis:

1- Some professionals call LCH cancer and some call it an autoimmune disease. They don’t really know exactly what to call it, according to Dr. Fluchel. So much is still being learned about LCH- even in the last 15 years, they have learned so much. It’s hard to say why they don’t call it cancer, but that’s okay with us! Langerhans Cells are normally found in the body and maybe that’s why.

2- It can affect multiple organ systems and that is how they determine the severity. Because Benjamin has it in his skeletal system AND his lungs possibly, they are categorizing him with “moderate risk”.

3- Prognosis- Good! Dr. Fluchel said most children do well these days with 12 months of chemotherapy. Only a few years ago, they treated it with 6 months of chemo, and at that time there was a 1 in 3 chance that LCH children would get it again sometime after their initial chemotherapy. Now they think there is only a 1 in 4 or 1 in 5 chance that the LCH will return with the 12 month treatment.

As for the little guy, the real reason for the lengthy email, he’s doing fabulous! The hardest part of the day for him was the skeletal survey (which they found nothing new thankfully!). He didn’t like laying on the table for 20 minutes, while strange ladies were trying to hold him down for x-ray pictures. I gave his first dose of Prednisone tonight. We’ll see how he does with that.

Thank you all for your concern and support. It means so so much. More than you might ever know! Again, we know Benjamin is being blessed. Thanks for your prayers. We feel thankful for today.