Finally, The IVIG Transfusion

We finally got our IVIG transfusion on Friday. The insurance company approved it a couple of weeks ago, but then never sent it. I called them and asked where it was, and they were like, "we need a prescription from the doctor" . Meanwhile the scrip had been sent a month ago. Whatever... they finally sent it (to my house). One of my friends joked that having a human blood product in the fridge was a great way to diet! I knew the transfusion would take a few hours and that Catherine would get benadryl before it so I didn't bring Alex. That was definitely a smart move because the transfusion lasted 4 hours! They have to check Catherine's vitals every 15 minutes to make sure she is handling it well (you can have a severe allergic reaction when getting transfused with any blood product be it red blood cells or platelets, thus the benadryl beforehand). Catherine played with some volunteers the whole time, but did ask me why Cindy was checking her temperature and blood pressure so much. An eventful end to an otherwise long and boring week stuck in the house because of the weather. The picture above is of Catherine with her IV pole (attached to her port underneath her shirt). So many people ask me (especially my mother) how Catherine can stay still for so long during these procedures. Well, she doesn't. She is all over the place and has mastered maneuvering herself around the office with the IV pole, or she stands on top of it and has me give her a ride. A nice way to travel I suppose. Later on that day and then again on Sunday, Catherine was mistaken for a boy! I guess I'm surprised it didn't happen sooner as I have heard that is common. Still pissed me off and I'm a you know what so I said both times, "she has cancer - it's from the chemo." Always shuts them up.

This past Saturday Dave and I attended the celebration of Katie Shelley's life which coincided with what would have been her 4th birthday. Dave and I agree that we would never have had the strength to hold such an event, but it really was very beautiful and touching and we consider ourselves lucky to have known her and been a small part of her life. I recently saw a quote attributed to Abe Lincoln: "Cherish Each Moment as if it is the First. In the end, it's not the years in your life that count....it's the life in your years." I think this quote fits the Shelley family to a tee.

This week's Alexism: My lovely son (who is starting to use the potty!!!) was very thirsty. Dave and I were trying to get a few extra moments of sleep so Alex went in the fridge himself, took the bottle of juice and threw it on the floor knowing that it would make the top fly off. He then proceeded to drink straight from the bottle. His response when I asked him what he had done was, "Mommy, I'm thirsty." Now that's what I call problem solving!

The Katie Lauren Shelley Charitable Trust

So many people have asked me if they could donate to a charity in honor of Catherine's friend Katie who lost her battle with leukemia a few months ago. Amazingly, in the short time since her passing her parents have managed to create a charity in her name to help other families of children with life threatening illnesses. Her parents are truly amazing people, please take a moment to look at what they have put together. www.katielaurenshelley.com

Correction

I have just been informed via e-mail that Aunt Lauren took the pix of Alex, not Pop-Pop (although Pop-Pop e-mailed them to me). Here are a couple more of Catherine.

New Pictures

I just realized that it had been a while since I posted some pictures of the kids. Here are some good ones from yesterday, of course taken by Pop-Pop! I especially love the ones of Alex as they capture his crazy personality.
BTW, just had to share a funny story. On Fridays, Catherine gets her weekly dose of methotrexate at home, this is also the night I give her her extra 25mg of 6-MP. I guess because my appointment was on Wednesday, I was a little thrown off. So on Saturday, I am driving along shopping for Easter when all of a sudden it hits me that I forgot to give her the Methotrexate. I had just finished drinking a 24oz smoothie for lunch and thought it was going to come right back up. I immediatley called the answering service from my cell and got a call back within 10 minutes from one of the Yale doctors. She actually gave me credit for remembering so soon after the missed dose and said to give the dose as soon as possible and of course to let Dr. Joe know as her counts might be affected slightly by that. Got home and gave the dose. Later that night it hits me again that I forgot to give the extra 25mg of 6-MP! I gave it to her and went to sleep. I cannot believe that I forgot to give her the meds - I never have and I hope that it's the last time I ever do!

Happy Easter

Happy Easter and Passover to all! Easter should be an interesting one in our home as Catherine will be on Day 5 of her steroid pulse. Hopefully her cousins will be able to keep her mind off her pain and rage. I always know the steroids have kicked in when Catherine declares that she hates Alex. They really love each other and she never says it any other time. Being a 2 1/2 year old boy, he really knows how to push his big sister's buttons. I hope it doesn't give him a complex as he gets older (although as he gets older we will explain more to him so he doesn't take it so personally). Once again we had to do our appointment on a Wednesday as the office is closed for Good Friday so I got to really meet Dr. Farzana (Pankashar) as she was our doc that day. Such a nice woman. In a way it was good that she wasn't as familiar with specifics of Catherine's case in terms of dates because my question forced her to look into Catherine's file and I was able to see some lab work from last year that I had never seen (actually, Dr. Darryl had handed me the cytogenetic lab work that stated she was in remission, but at that time none of it made sense - a year in and way too much research later, I get it). Basically, I have always hounded the doctors on why this particular protocol (for those of you interested, you can Google AALL0331 to see what her protocol is). I wanted to know her take and she just immediately was like, "I would never put her on anything else" - so convincingly. So that's that, no more questions on the protocol.

I always hate to bring other patients up, but yesterday I learned that one of the teenagers in the office relapsed during the Maintenance phase of his treatment for Non-Hodgkins Lymphoma which means it is not responding to the chemo. He will be getting a Bone Marrow Transplant in Boston on Friday the 13th. I was just so stunned to hear this as it is not the norm and he is the 3rd kid I now know that this has happened to. He is just such a great kid - we first met him over the summer (hell, I lived there over the summer so I met everyone then!) I originally thought he was one of the many teenage volunteers who came to the office to play with the young kids and give the parents a break. He played Candyland with Catherine then and even yesterday as Catherine was giving me a hard time about her Decadron (steroid) dose, he and his father were trying to help me out. So please pray for him and his family. I also don't like to post the blogs of other families, but this one is amazing - I have been following this little girl from South America for a few months. She was diagnosed with Infant ALL about 2 years ago, relapsed and had a bone marrow transplant at Duke, relapsed again about 6 weeks ago and is preparing for her 2nd bone marrow transplant. Dave and my friends always ask me why I follow the stories of families like that and I always tell them that 1) it reminds me to be thankful for everything and truly take one day at a time, and 2) I draw strength from families who seem to be able to handle such adversity with the most amazing grace. Anyway, her site is http://www.caringbridge.org/southamerica/alexia/

Thanks again for all your support and for letting me share these stories with you.