Delayed Again!

Thought the third time would be a charm but not today. We had actually gone to the doctor Tuesday to check Catherine's platelets, and possibly start Delayed Intensification. It was a no go, but not because of her platelets which went up to 74,000. This time Catherine's ANC was the problem - it had dropped to 400 (it needs to be 750 to start this phase). Her hemoglobin was extremely low as well, but luckily that number doesn't play into whether or not we start. Dr. Darryl asked if she seemed sick to me and I had said that she had been coughing and sneezing, but we weren't sure if it was a cold or allergies.
Determined to start this thing today, Dave and I kept Catherine in isolation mode to keep her away from any germs. I guess it didn't work because although her platelet count was up to a solid 110,000, her ANC had dropped to 119! Dr. MJ, reminded us, as she always does, that the 6-MP and methotrexate given at home is very strong stuff and stays in the system a long time. So even though we have been off everything but the Bactrim (a prophylactic antibiotic) for 2 weeks, it is probably still affecting her bone marrow. Or, quite frankly, she's fighting a cold. Now we will stop the Bactrim (which also suppresses the bone marrow) and we go back Monday, July 10 (they already have two LPs scheduled for next Friday so they can't fit us in). Hopefully, we will be ready to go then. If not, they will do another bone marrow aspirate to check for leukemia. Keep your fingers crossed that all goes our way!
Thanks for all your support and we hope you have a happy and safe Fourth of July!

Delayed Intensification Delayed

Like my play on words?? Well, went to the doctor Monday to check Catherine's platelets. They were up to 45,000 so no transfusion, but I knew that we were on a wait and see schedule for the start of Delayed Intensification (her platelet count has to be at least 75,000). Deep down I knew we wouldn't be starting - Catherine just seemed to be bruising left and right and while I was waiting for Dr. Elisha to come in, I found a new bruise on her forearm. Sure enough when he came in and saw her he felt the same way. Got the counts and she was back down to 28,000. So, I had to drive back down to Yale, this time with Catherine in tow, to pick up the platelets. The transfusion went smoothly and Catherine did great. She did a little art project with one of the volunteers and made me wait to go home until she was done! Of course I am frustrated that we are delayed. I just want this to start so that it can end. We have to go back Tuesday to check her platelets, and I told Dr. Elisha that if her counts are okay I want to start immediately. He agreed so we have another early appointment and will be ready to go. By the way, Dr. Elisha, being the strange guy that he is (he is about mine and Dave's age, is super smart, and so great with the kids), looks at the delays as a good thing. To him, the harder it is for her bone marrow to recover from setbacks, the better the chemo is working, at least in his mind.

On another note, don't know if any of you watched "A Lion in the House". I watched part of it and what a HUGE mistake. Granted, the strength and resilience of the families was awe inspiring, but 3 of the 5 children die (2 from leukemia and one from lymphoma). Not very representative of the survival rates for either disease. Still, it disturbed me and it may take a while to get it out of my mind.

Please pray for Catherine to hold on to and produce some platelets in the next five days. Thanks!

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.

Oops!

Catherine had a pretty good week last week. Save for a couple of days when she could barely get out of bed, Catherine was actually full of energy and did great at camp and at a couple of playdates she had. Last Sunday we went to a picnic at the beach. She was very much into it doing the potato sack race, a hot potato game and the limbo. She and Alex had so much fun. I'm glad we decided to go and that the weather held up.
Unfortunately, her appetite took another nosedive and all she ate between Monday and Friday was an ice cream cone, a peanut butter and jelly sandwich, 2 hot dog rolls and a handful of munchkins. As a result she lost 2 pounds. She now weighs what she weighed 2 years ago at this time. Dr. MJ said that we really need to get her to eat particularly with the next phase of the protocol coming up. Somehow grapes came up in our conversation. We have been told that grapes are something we should stay away from, particularly when Catherine is neutropenic (they are very difficult to wash). But given that Catherine won't eat anything and she keeps asking for them, Dr. MJ suggested I go out and by one of those vegetable/fruit wash solutions. She said that she uses them and that they actually make the food taste the way they should. She also told me that I would be surprised by just how much dirt comes off the fruit. Well, was she right. The color of the water after washing some grapes and strawberries really grossed Dave and I out. And, the fruit actually looked better after washing it with this stuff. So that said, I highly recommend everyone use this stuff to wash their fruits and veggies. It seems that every grocery store sells them.
Now for the oops part. Every week, I am asked to go through all the meds I give Catherine at home. For the first time this week, they asked me what dose of the 6-MP I give her. When I said 75 mg Cindy, one of the nurses seemed shocked, but I told her that was what it said on the Protocol. When Dr. MJ came in and looked at Cindy's notes she also asked me why I was giving her so much. She also asked me if someone told me to do that. I told her no, but that it said it on the Protocol which is like my new Bible. Basically, the number on the Protocol is used in some calculation to determine the dose which is based on Catherine's body surface area. I should have only been giving her 50 mg (which is what I gave her during the Consolidation month of the Protocol). Well, it was like a lightbulb went off for everyone. The reason Catherine's counts had dropped and not recovered very quickly was because her body needed to work through all the extra chemo I was giving her. Thankfully, I wasn't doing any damage to her. So we are back to the normal dose. Good thing too because her platelet count has been steadily dropping and getting a little too close to a level where they would have to postpone the start of the next phase, which I just want to get started.
Now our new thing this weekend is that Catherine has developed mouth sores. Poor kid. They are so painful for her - she is having trouble eating and drinking. To get rid of them, we have to make her rinse with some prescription mouthwash. She screams while doing it because it's "spicy", as she puts it (it smells like Listerine which we all know burns even normal mouths). But, as usual, Catherine is a trooper and even though she is screaming at the top of her lungs, she does what she needs to do to get better.
Finally, I just want to thank our friends here in town. When Catherine was first diagnosed, they all rallied and put together a schedule for people to cook for us twice a week. Now with the toughest part of our protocol ahead of us meals will be once again cooked for us and as always I am thankful and touched by all the people who have been there to help us get through each day. Without them, I probably would have gone completely out of my mind by now and be eating only PB&J sandwiches! You all know who you are and thank you again!!

New Pictures

Just wanted to post some pictures of Catherine from her birthday. There's also a picture of Alex in there. Don't want him to feel neglected.

Happy Birthday!

Well, this week certainly had its ups and downs. Last Friday, Catherine went on all her meds and getting her to take them was no easy task. She actually said to me, "I wish my counts were low again so that I don't have to take my medicine." We certainly can't fool her! Unfortunately, the timing of the steroids coincided with her fourth birthday. On Sunday we had family over to celebrate. Friday's dose of the Vincristine gave Catherine its typical side effects - jaw pain so severe she can barely drink and a terrible headache, on top of that the 'roid rage. Sadly, it was not the happy day we had hoped it would be for her. Still, Dave and I prayed that Catherine would be in a better mood for her actual birthday when we would have some of her neighborhood and school friends over for a celebration. While the day started off a little shaky (still had that headache and jaw pain), once Catherine's friends started trickling in to the backyard, her mood changed for the better. The kids enjoyed a very creative treasure hunt put together by Dave, a jolly roger pinata, and a cake that had a picture of Catherine with her Backyardigan toys. All in all, the day turned out great and Catherine (and Alex) had a fantastic time. Dave and I would like to thank everyone who sent Catherine a gift or a card for her birthday, she loves getting mail!
The rest of the week brought much of the same, fatigue, pain, moodiness. Catherine started a little 2 week summer camp at her school. She had some trouble separating from me (which the doctors tell me is very normal) and was tired the first couple of days, but by Thursday, which was dinosaur day, she was feeling much better.
Today, Catherine's counts were through the roof - a result of the steroids. She received a PEG-Asparaginase shot - the second to last one she will ever get on this protocol. Thank God because it is an intramuscular shot, and even with the EMLA cream, it is extremely painful and always leaves a major bruise. It was also the last major chemotherapy (other than what I give her at home), treatment in the Interim Maintenance Phase. On June 23, assuming no more delays, we will begin the dreaded Delayed Intensification phase.