Feb 20, 2016 (Sara)

Maya has been up and down over the last 36 hours. This morning when I arrived, she was sunggly in bed with Daddy but still sort of grumpy and VERY pale. Like alarmingly, Casper wasn’t even this white, pale. My stomach dropped knowing that yesterday’s hemoglobin was already extremely low at 7.0 and I was almost afraid to ask what it was now.

It was only 8:15 so I was patient and waited to discuss the results with a resident…I needed coffee anyways. I have no problem with asking a gazillion questions or looking over the shoulder of the clinicians when they are looking at Maya’s labs or MAR (the list of drugs/meds she’s on). I think it surprises some of the doctors and nurses but everyone is very helpful and willing to discuss anything with me. I also keep close tabs on what meds they are giving her.

She is currently on a blood pressure med (Norvasc every morning) and they just increased it today since she continues to run high. Norvasc is “long acting” but they have had to give her some fast acting BP meds a few times since she’ll shoot up to 145/90…not good. They like it closer to 117/67. They anticipate her kidneys will shrink and return to normal after chemo (a reminder our kidneys help regulate blood pressure) but since she is now on steroids, her BP will likely be high anyways. Decadron is the steroid. She will take this twice a day until March 15th (day 29). Decadron is not chemotherapy but it is used in conjunction with the chemo because it has been found to promote destruction of leukemia cells. Allupurinol three times a day is to control her uric acid. Uric acid is a by product that the leukemia cells produce when they breakdown and since her kidneys are enlarged and aren’t functioning perfectly, she needs a little help. The last thing she needs is a kidney stone. Zantac helps with a probable stomach upset from the Decadron. Maya hates this one the most (says its “spicy”) and I wish she didn’t have to take it but I don’t want her to feel bad if she doesn’t have to.

She also takes Vit D supplement and Miralax. The infusion of chemotherapy via IV (once a week for now) called vincristine, plus today’s infusion can cause constipation. No good for a kid who has no platelets and might bleed. I think the RN’s would give her the “take my meds no problem” award if they had such a thing. Every one is so impressed. I hope she continues to be okay with it but I have a feeling she’s going to start associating the meds with not feeling good soon.

After coffee and some breakfast I hunted down a nurse to find out the results of the blood work. Hemoglobin was down to 5.3 today. This was a really big drop and one that initiated the protocol for transfusion. Her platelets dropped to 25 and her WBC are now down to 1.0. The new blood definitely made her feel better and I was oh-so happy to see some color on her cheeks.

After the blood she had an hour long infusion of peg-asparaginase; this will be given to her again in the future as well. This type of chemo is produced by bacteria so it can cause allergic reactions though she showed no signs of it today. Phew. In the future, she’ll also have to be monitored closely because she’ll have built antibodies. For inquiring minds and from what I understand: asparaginase is an enzyme derived from bacteria (usually E.coli) and is used for chemotherapy to inhibit the leukemic cells from continuing to divide and grow. Asparagine is an amino acid (non-essential meaning humans make it and we do not need to eat it) and is highly involved in the metabolic control of cell function. Asparaginase promotes break down of asparagine to aspartic acid in the cancer cells so they can’t keep dividing and growing. As with most chemotherapy, peg asparaginase targets fast growing cells like cancer cells…and hair cells.

Maya tolerated the transfusion and infusion like a champ. We had a visits from a few doctors, the child life specialist, and the dietitian (wooot)! All sorts of people in and out. Scotty went to visit Lincoln and I was able to talk Maya into a scrub down with super special anti bacterial wipes. She doesn’t love the “sponge baths” but I can usually bribe her with a warm blanket.

I almost cried today when I saw her do a little dancing. She didn’t go crazy but I put some music on and we danced to five little monkeys. Then we took a bath, curled up on the window seat, colored and watched for the trains. She may not be feeling well but I know deep down, her core being is still there. Her fire is still lit. The dragon may be sleeping today but that is only because tomorrow she will wake for battle. Love is life.