9 Month Check-Up

Today was Catherine's 9 month check-up in Guilford. Dr. Joe was unexpectedly on call so we met with the head of pediatric oncology at Yale, Dr. Gary. He was very nice and I badgered him, as I always like to do to doctors who I don't know very well, with millions of questions. My questions were primarily scientific ones, such as whether or not they can test for these chromosomal abnormalities that eventually lead to leukemia in the womb. Answer to that is no, but he was fascinated by the fact that I donated Catherine's cord blood to research after her diagnosis letting Viacord know when Catherine's diagnosis was and what her chromosomal abnormality was. He asked me if they have ever gotten back to me on that and sadly the answer to that is no. I personally think Viacord was given such a unique opportunity to research this as cord blood collection is relatively new. Wouldn't they be the heroes of pediatric cancer research? Unfortunately, I don't think they have used her cord blood in that way. I tried though.
We also discussed how her ANC and platelets are not yet those of a normal child and he reminded me that it takes quite a while for the body to recover from 26 months of chemotherapy. He actually thinks her numbers are great and that I should be happy - ANC 1887, hemoglobin 13.4, and platelets 141,000 (I was thrilled with that number). He seemed real happy so I guess I should be happy.
Then it was off to Yale, a hospital I was really hoping to never step inside again, but Catherine needs to have a mole removed from her knee as it will eventually become melanoma and I would never have that done anywhere else but Yale. Odd feeling walking into the place; I feel oddly at home there...probably the result of too many nights on 7-4. Certainly easier to go in there without her having cancer. The surgeon who did her two port-a-cath surgeries will do this surgery too. He's an excellent surgeon so I know she is in good hands. Just frustrates me that I have a kid who had leukemia and now at the age of 6 needs to have a mole that will eventually become melanoma, the deadliest of the skin cancers, removed. Damn those 9/11 terrorists who made me breathe bad air while I was pregnant.
Other than that it is the same old thing here. Just lots of snow and more snow and more snow. Will it ever end??

8 Month Check-up

Another month down. I was particularly nervous with this visit given the virus she battled a few weeks back. I knew it would effect her counts, and it did, but it wasn't horrible...ANC - 2132, hemoglobin - 12.4, and platelets - 115,000. I just knew her platelets would take the hit for the rest of the gang, and sure enough, this morning she woke up with a bizarre bruise on the top of her hand (even the nurses and doctor made note of it). I think it's her body's way of getting me mentally prepared for a bad number so that when I see it in black and white I am not totally devastated. I think we have all accepted the fact that she has naturally low platelets, but I will always hold out hope that one day it will fall into the normal range and actually stay there.

As for the fever, it lasted a whopping 3 days. My consolation was that a good chunk of her class was sick and then eventually I got it, providing me with some sense of comfort in a perverse way. Most upsetting about the virus was that it puts the thoughts of relapse and how abnormal our lives are front and center in my mind again. And when that happens, a buzzing goes through my head and I can feel myself shutting down while going through the motions of my daily life that I can't explain. I had it when she was diagnosed and I think it is some kind of internal coping mechanism. During her treatment I dreaded fevers because they meant a minimum 48 hour hospital stay. I would sit in the hospital and look forward to the day when she would have a fever and I could take care of her at home like a normal mother. When this fever came, it made me realize, I will never be that mother. Even Dr. Joe tells the fear will remain with me even when she is an adult. And at least at the hospital, they run a litany of tests to check for certain viruses and bacterial infections. Now I go to a pediatrician who checks her eyes, ears throat and lungs and in reality guesses what the ailment may be. Not to put pediatricians down, but unless they are drawing blood and sticking q-tips up your kids noses (they run tests on the mucus) or getting x-rays on their lungs, they truly don't know what is ailing them. For those of you wondering why something as simple as a fever would upset me...a persistent fever is a sign of relapse. That is why if she has one that lasts at least 3 days, she has to see Dr. Joe. Our saving grace on this one to avoid the trek to Guilford was that she exhibited strong signs of a respiratory infection and her energy level held up. Again somewhat comforting, but I have a few more grays. There are times I wish I could put her in a bubble, but I can't and I know this won't be the last fever this winter. Of course a few other things just put me at unease. When she was finally ready to go back to school, it snowed and the kids had off. Catherine loves the snow and played outside for about 2 hours. I have pictures of the kids sledding that remind me so much of the pictures I have of her sledding just 5 days before her diagnosis. Looking at them actually made me cry and also made me realize that whenever I look at a beautiful snowfall, I will always be reminded of that day in February that forever changed our lives. So it brought me back to that time and once those thoughts invade the front of your memory, it takes a long time for them to go back.
I know this is a depressing post so I will end it by saying that we did have a lovely Christmas and New Year. The kids had a great vacation, the highlights being dogsitting our friend's dog, which the kids loved, and their first ski lesson. Catherine was fantastic and Alex got better as the lesson went on. I guess Dave and I need to brush up on our ski skills and start hitting the slopes with the kids. So until next month....