When I arrived at the hospital after work on Friday, Chris and Scarlett had just been put in a room. Scarlett tolerated her port access and lab draw, and was ready for chemo. It took a long while to get everything in order, so we spent a lot of time waiting with an impatient little girl, but she did as well as could be expected with toys, Yo Gabba Gabba on her iPad and snuggling. We were in the hospital for more than 7 hours, then sat in traffic for 90 minutes when it should have taken 20, so it's a miracle we got home with any sheds of sanity.
She was pre-medicated for nausea, just in case. Then she got both 90-minute infusions back to back. Around the time the chemo began, her nurse practitioner came in to check on us and discuss some of the last details. She stayed for nearly an hour, answering our questions, discussing the schedules and side effects we should expect, and looking at pictures of Scarlett (a favorite past time of us all!)
After talking with her, we have a much better idea of what we are looking at. The main talking points:
- She will get three different drugs: Two chemotherapies - temador and irinotecan - and Avastin, which is intended to stop blood vessels from continuing to feed the tumor cells.
- She is scheduled to get infusions of Avastin and irinotecan every other Friday. Temador will be given for the first 5 days of the cycle at home.
- The most significant side effects we are watching for are vomiting and diarrhea - icky, but not unbearable. There are several other possibilities, including hair loss, fatigue, slow wound healing, and nose bleeds, to name a few. Eventually, we will have to closely watch her blood counts, but she should not (fingers crossed) get as low as in her first chemo, and we should be able to avoid blood transfusions.
- She is currently scheduled for 8 months of this routine, with MRIs to monitor for tumor progression (or, we hope, lack thereof) every two months.
We'll never know, but it has made us a little hyper-vigilant. We set up our video baby monitor again, after several months of not using it, so that we can easily check on her without waking her with an open door. I frequently feel the need to check on her before bed, just to make sure everything is okay. We also turned her car seat around to face forward. I was not too keen on this, as I am well aware it is safer to be rear-facing as long as possible, and at nearly 25 pounds, she is far from the limit for rear-facing; however, she is two, so she passes the recommended age, and she spends so much time in the car (at least 2.5 hours a day for school and therapy) that it made us feel better knowing we could see her easily on long drives. She loves being able to see us, so at least she is happy.
We are taking it one day at a time, still watching her like hawks. If it could be like this for the next 8 months, we would be in good shape. There's no way I am going to bet on it, but at least so far, we are feeling confidant.
One down, 15 to go.
Oh what a relief to know the first round went smooth. Praying and praying Scarlett just sails through this chemo treatment without any issues.
God Bless you dear Scarlett.
Always in my thoughts and prayers!! I've been following your family for a very long time. Our daughter are the same age :) stay strong, keep your faith! Praying that Scarlett continues to do so well
Continuing to keep Scarlett into thoughts as I have for two years now. She is a gorgeous little girl!
Have you heard of Joy Jars? They were started by an older girl who had cancer. I tried to request one for Scarlett, but PO boxes are not allowed.
Here is the site if you want to check it out. They are free and meant to cheer up kids fighting cancer.
Just choose Request a Joy Jar
@Colleen - Scarlett was very lucky to get a Joy Jar last year right around the time she finished chemo. They are very sweet - thanks!
hugs to all of you, sending good thoughts and strength your way, thank you for continuing to share with us, love from Austin Tx, Irene
many hugs! I pray that all goes well and she's able to tolerate it and get rid of this once and for all! Prayers from PA
My dad took Temodar and we were all amazed at how well he tolerated it. The only time he got nauseous was when he forget to take his Zofran. And he was able to tell us how he was feeling (unlike Scarlett), so we knew he was okay! Hoping the same is true for Scarlett.
Brandi-I am so happy to hear Scarlett got one. I had been following that girl and the organization for awhile and think it is such a great thing they do for kids.
I hope sweet little Scarlett is doing well. My little boy is just a few months older than her and I think of her often.
Much love Brandi. :)
Hugs to you, mama. Praying for you and your beautiful girl.
Hang in there. All of you are incredibly strong!!! Praying for you!
I know for sure that everything is going to be okay, Brandi. Especially now that, with the use of technology we can produce anything out of it. Also just keep believing that your family could make it through and everything will just fall into place just like the way you want it to be, Brandi.
I'm sure she'll be fine, Brandi. For now she's taking those different kinds of drugs, but that's alright, because we know that after some years she'll be taking vitamin C instead - she'll be living a normal life, she'll be strong and playful! By the way, "Scarlett" is a beautiful name for a beautiful girl! - Alica
I can't wait for the time that Scarlett will be fully healed on her illness. Good thing that little Scarlett has a family giving and providing unconditional love to her.
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