Platelet Transfusion

Today's visit brought a huge shocker to both me and the doctors. While Catherine's ANC and hemoglobin levels were just fine, her platelet count dropped to an alarming 28,000 (150,000 is the low end of normal). As a a matter of fact, looking at her past counts, her platelets have been dropping each week for the past few weeks. Dr. MJ and I had discussed this last week, but she felt that with me going back to the normal dose of 6-MP that they would stabilize. I guess not. That said, we had to get an unexpected transfusion. That meant I had to drive down to Yale New Haven Hospital (11 exits south of the doctor), go to the Blood Bank where they give you the platelets in a mini-cooler, and then drive back up to the office. Luckily the doctor's office wasn't busy so Amy, the social worker, watched Catherine while I did the drive. That way they were able to give her Tylenol and Benadryl while I was picking up the platelets (preventative measure in case of an allergic reaction to the blood product) and all we had to do when I got there was access her port and start the transfusion. Unfortunately, a platelet transfusion takes about an hour and then another 30 minutes to flush her system , so once again Catherine missed a birthday party. I raced home to try and make the tail end of it, which we did, but Catherine being the smart cookie that she is, knew she missed the whole thing and was upset. We were able to make up for it somewhat by going to an impromptu barbecue at a friend's house, but we ended up leaving that as Catherine refused to take her weekly dose of methotrexate there. We have another visit Monday to check her platelets - they need to be at 75,000 by Friday to start the next phase. Hopefully they'll be a bit higher. Also, she will now have a break from all her meds to give her bone marrow a chance to recover before it gets bombarded by the next round of chemo, so hopefully that will help her.
So Dave's aunt sent me a blog to read put together by her neighbor whose son was diagnosed a year ago. I love some of the stuff she has found and I wanted to post something from her site because it really hit home with how I feel:
"Some Things I have Learned about Life, Leukemia and Love"
1. It is a shame that we take our family's love for granted until something as horrible as leukemia makes us realize how valuable that love is.
2. It is hard to look at your child's bald head. But when you are holding him tight it is warm and soft and makes you remember him as a baby.
3. True friends never say things like "I am sorry I haven't called but it is so hard for me to talk about it", true friends know that it is hard for ME to talk about it too but that I NEED to sometimes.
4. So much of what I used to consider important in life is now insignificant. You can't cuddle a big fancy car, you can't kiss a fancy wardrobe, and a nice house won't crawl into your lap, put their soft hand on your cheek and say "I love you mommy".
5. I learned that only a child would greet with a smile, hug and a kiss (and a thank you), the person that sticks a needle in their spine once a month. And only an oncology doctor or nurse is deserving of such admiration.
6. Heroes don't save lives on movie screens, they save lives by donating blood, platelets and bone marrow.
7. Just when you think you can't go on, God will throw you a lifeline. A hug from a friend, a phone call, a pat on the hand from a kind nurse.
8. There are many ways to cope when your child has cancer, but the very best is to hold them tight and know that love may not conquer all but for now it’ll do.

Getting personal, I have to say this experience has not gotten easier. Other parents tell me that I will start to feel a bit better once we're in long term maintenance, but until then, I am not ashamed to say that I am still angry that my child has to endure this (that my whole family must endure this), and not a day goes by that I don't cry for her. It is amazing that I still have tears to cry. I never thought that I would have a child with cancer but I do. It is our reality and we must learn to live with it. It sucks, but for some reason (and I do believe there is a reason), God has chosen us for this crazy journey. I know in the end we will all be stronger for it, but it will be a long 2 years. Let's face it, we are all human and there are things we take for granted. I never took for granted that God gave me 2 beautiful, (and until February) healthy children, but I did take for granted the freedom to take them to the grocery store or make plans well in advance. The past five months have taught me to enjoy every second with them because not only will they grow up before I know it, but I now also know that life can change in an instant. That said, I highly recommend everyone watch this 2-part documentary on PBS being aired June 21 and 22 from 9-11. It’s called "A Lion in The House", and it shows the enormous burden that cancer puts on any family. From what I have read from another parent, it's done with taste and dignity, but there's no escaping the difficulty of what having a child with cancer is. To read more about it, if you are interested, go to www.itvs.org/outreach/lioninthehouse/index.htm
Sorry if I have vented, but thank for the forum and for all your support.