I have great pictures to go with this post, so check back soon and I'll get them up!
I'll start this post with the sad news in my life. My dear friend Karen lost her fight with cystic fibrosis on Thursday and went to be with the Lord. She was an amazing person, full of positivity and had an enthusiasm for life that would be a great lesson for us all to learn. Karen has a sweet husband Mark and a 7 year old son Nick who needs our prayers, for comfort and peace as they are sure to struggle with their grief and loss. Karen’s legacy is wide spread as she has touched many lives and we love her and will miss her.
Karen’s death has been extremely hard on me because there were two children in our area that died this past week after battling cancer and the frustration of it all just gets to me sometimes. I stood in my kitchen crying on Friday morning when I received confirmation that Karen had passed and Rachael popped her head around the corner. Her smiling face was instantly concerned and she asked me, “Mommy, why are you crying?” I had explained to the kids that Karen was in the hospital and so they understood that she was very sick and that she could die. I told Rachael that I was sad because my friend had died and I was going to miss her, so I had to cry for that. It never fails to amaze me how God comforts us, because Rachael looked at me with great wisdom in her eyes and said, “Don’t cry, Mommy, because Miss Karen went to heaven and someday you’ll see her again.” She gave me a big hug and went on her way and I was left with her 5 year old message that Karen is in Heaven and that’s nothing to cry about.
Nowwww….on to happier things before I break down and boo hoo right now, drip tears into my keyboard and short-circuit the thing.
Friday night was our Tampa Bay Lightening game courtesy of the Children’s Cancer Center, and it was a fantastic night!!!! Oh my goodness, we had such a good time, I thought we’d be out of there by 8:30-9:00, we didn’t get home until 1 AM! MY kids can party with the big dogs because not one of them nodded off until we got to the car. The game was phenomenal, we got to sit in a box suite provided by Brad Richards and the Steve Yurrid foundation. They decorated this thing especially to be used by pediatric cancer patients and their families for these events and it was so much fun! Nathaniel tells me, “Mom, they have a sink, a bathroom and TWO TVs! You could live here!” I told him, “Nathaniel, this suite is sooo much nicer than my first apartment, you have no idea.” We all enjoyed an awesome game, the girls just loved having free reign to be noisy and jump up and down at will. Nathaniel hung out with some kids playing on a Playstation (on one of the TWO TVs) and watching the game periodically. After the game was over, we got escorted down and had a chance to do a meet and greet with the coach and players. That was cool, except we’re not big hockey watchers (which we’re going to have to fix) and we really didn’t know who many of the players were. The players were kind enough to walk around and autograph items for all the families and take pictures for the fans. I have some great ones of the kids and I’ll post them when I get them off the camera.
Saturday night was the Wiggles concert, good times just keep rolling around here! Rachael and Peyton had a blast, they sang and danced. It was funny because when the Wiggles came on stage and started to sing, Peyton just sat there, absolutely mesmerized with her mouth open. It was precious and we appreciated the chance to see her so happy. Luckily it only lasted an hour and a half, and we got to go to the same suite we were in for the Lightening game, so the kids could watch and the parents could hang out if we wanted to.
Thank you so much to the Children’s Cancer Center for giving us this fantastic weekend.
Our sweet friend Adelaine is in the hospital right now, she’s been in since Friday and they just found out that her fever and sickness has been because she has a yeast infection in her throat. One of the medications the girls have to be on is a weekly, three-day dose of antibiotics and that’s led to Adelaine’s yeast infection. Poor little girl has just been so sick and we continue to pray for a fast recovery. She was released from the hospital Saturday for a few hours so she could come with her family to the Wiggles concert. She wasn’t all that thrilled to be there all the time, but it was wonderful for her family to get out as much as it was ours and to get the chance to spend time together.
Peyton has been a trooper through a tiring weekend, and it’s only Sunday! This is a more relaxing day for us. We have a birthday party to go to for Nathaniel and then I’m taking Peyton down to visit Adelaine at the hospital. Angela and I are also going to take the girls down to meet a family who’s admitted at the hospital that just got diagnosed this week with ALL leukemia. Their little boy is 3 years old and we’re hoping to reach out and give them some support at this time.
Peyton is still feeling a little down, she’s tired and worn down from the chemo and we go back on Monday for more, but that will be it for another 9 days. So, we get to enjoy the rest of our Thanksgiving break with no chemo visits, just blood counts. I did have a long talk with the doc about Peyton’s future treatments and here’s how it goes: After this cycle is over, she gets a two week break for her counts to come up (which means NO CHEMO FOR CHRISTMAS!!) and then we start a very very harsh cycle called “delayed intensification” which is back to 4 days a week and her counts being extremely low, THEN a cycle like the one we’re on which is fairly easy going, and then back to a second “delayed intensification”, only even harder. After that we’ll have her cranial radiation treatment and then we’ll go into maintenance…..the holy grail of leukemia treatment!
The doctor did talk to me about Peyton’s last bone marrow results. The bone marrow previous to our last one had 0% blasts (leukemia cells), but the most recent had 6%. This bone marrow was performed when she had her staph infection, so there is some thought that her raised blast count was partially due to her body doing its job and trying to fight off infection. However, the doctor did make a point to explain that it was still high. I asked her straight out if this meant that Peyton was headed for a relapse and she said that they were not classifying it as a relapse, but they would be keeping an eye on her for any symptoms and after her next cycle of chemo she would get another bone marrow test. This was not good news, but not necessarily bad news either. They constantly remind us that treating this disease can be tricky because it’s still such a learning process. They know they get certain results from certain tests, but they don’t know that those answers definitively mean something.
So, I’m praying for patience with this situation, for my mind and heart not to panic.
I just realized how long this post is, and I’m wrapping it up now.
f.r.o.G…..fully relying on God
—Anissa
