Stepping up to the plate: she surprises us yet again
What more could we ask of our little warrior then we already have? Oh how about, "Charlotte, not only do you now need daily injections into your arm as part of this Immunotherapy but you also need to swallow a rather large pill 2 times a day AND you need to swallow it whole."
We knew (and hoped) this day would come where Charlotte could begin this part of treatment. In between her inpatient immunotherapy infusions are home medications. One is an injectable shot that stimulates her immune system to overproduce blood cells programmed to fight the cancer (white cell stimulator). The other medication is an oral chemo called 13-CIS Retinoic Acid/Isotretinoin or you might recognize it's other name as Accutane. Accutane was developed as a chemotherapeutic agent before it was widely used for acne treatment! So fascinating. In Charlotte's body, this Retinoic Acid will help any immature neuroblasts, that could rapidly proliferate causing tumors, to mature into normal adult cells. This medication is very important for the maintaince portion of her treatment. She must take it daily on and off every 2 weeks for 6 months. It's important to get every last drop. But many kids are too young to swallow the pill. So caregivers can poke a hole in the capsule and try to squeeze out its oily contents into a spoonful of yogurt or ice cream or peanut butter or whatever. However, chewing up the capsule can cause esophageal lesions and burns so swallowing it whole is ideal.
In preparation, a few weeks ago, we began to practice swallowing candy. It was a game for Charlotte. We started with a sprinkle and moved up to a larger sprinkle and then up to a small candy and we got about as far as most of a pez. She would put it on her tongue and swallow with water. Then we'd give her one to chew and eat after she practiced as a treat. We had not gotten up to the size of this pill yet before she had to begin this regimen. With her appetite being low after the first round of immunotherapy in the hospital last week, we fell behind practicing. The hospital even sent us home with a kit of empty capsules and info on how to help her learn. Yesterday was day 1 of swallowing the pill. She tried and tried but it would not go down. I have to wear gloves when handling it and when I poked it to squeeze out the oily medication, it would get on my gloves. She swallowed the spoonful of yogurt with the medication on it easily and even licked it off my gloves to help get it all. I then gave her the deflated capsule to swallow afterwards and she did! But again, this is not ideal. We really want her to get every last drop but I decided stressing wouldn't be good. I thought we would slowly keep working and eventually over the 6 months she might learn to do this. However, Charlotte decided to surprise us.
Why am I surprised that she could rise up to this challenge? She stepped up to the plate again this morning. "Ok I try mommy." First couple swallows it still laid there on her little tongue. I gave her a spoonful of yogurt to swallow with it and asked her to take straw sips of water until it slide down her "throats water slide"
and IT DID! She swallowed it whole and gave me a huge smile afterwards! The team called to follow up with me about a couple questions I had and they said she's the first patient they've ever had to swallow this pill! Yet again, Charlotte surpasses our expectations. Yet again, she over comes. She is repeatedly asked to step up to the plate in front of her, and sometimes she just doesn't want to, but she does it anyway. She does these things and it's like she knows she has to. She knows it's part of her lot in life and sometimes she hits a base hit like today, sometimes she hits a foul shot but she gave a good try, and I doubt she'll ever walk because God has decided her road will not be for walking, but I just bet one day this little one will hit it out of the park. And wow does she have quite the cheering crowd of fans watching and praying for her.
A few Pictures from last couple days where she is finally feeling a little better. She came home from the hospital last Friday and felt just awful most of the weekend. Only yesterday did she seem better. This round hit her pretty hard. She has more energy now, seems more interested in eating, and is less irritable (although severe mood swings are common with the Accutane).
We knew (and hoped) this day would come where Charlotte could begin this part of treatment. In between her inpatient immunotherapy infusions are home medications. One is an injectable shot that stimulates her immune system to overproduce blood cells programmed to fight the cancer (white cell stimulator). The other medication is an oral chemo called 13-CIS Retinoic Acid/Isotretinoin or you might recognize it's other name as Accutane. Accutane was developed as a chemotherapeutic agent before it was widely used for acne treatment! So fascinating. In Charlotte's body, this Retinoic Acid will help any immature neuroblasts, that could rapidly proliferate causing tumors, to mature into normal adult cells. This medication is very important for the maintaince portion of her treatment. She must take it daily on and off every 2 weeks for 6 months. It's important to get every last drop. But many kids are too young to swallow the pill. So caregivers can poke a hole in the capsule and try to squeeze out its oily contents into a spoonful of yogurt or ice cream or peanut butter or whatever. However, chewing up the capsule can cause esophageal lesions and burns so swallowing it whole is ideal.
In preparation, a few weeks ago, we began to practice swallowing candy. It was a game for Charlotte. We started with a sprinkle and moved up to a larger sprinkle and then up to a small candy and we got about as far as most of a pez. She would put it on her tongue and swallow with water. Then we'd give her one to chew and eat after she practiced as a treat. We had not gotten up to the size of this pill yet before she had to begin this regimen. With her appetite being low after the first round of immunotherapy in the hospital last week, we fell behind practicing. The hospital even sent us home with a kit of empty capsules and info on how to help her learn. Yesterday was day 1 of swallowing the pill. She tried and tried but it would not go down. I have to wear gloves when handling it and when I poked it to squeeze out the oily medication, it would get on my gloves. She swallowed the spoonful of yogurt with the medication on it easily and even licked it off my gloves to help get it all. I then gave her the deflated capsule to swallow afterwards and she did! But again, this is not ideal. We really want her to get every last drop but I decided stressing wouldn't be good. I thought we would slowly keep working and eventually over the 6 months she might learn to do this. However, Charlotte decided to surprise us.
Why am I surprised that she could rise up to this challenge? She stepped up to the plate again this morning. "Ok I try mommy." First couple swallows it still laid there on her little tongue. I gave her a spoonful of yogurt to swallow with it and asked her to take straw sips of water until it slide down her "throats water slide"
and IT DID! She swallowed it whole and gave me a huge smile afterwards! The team called to follow up with me about a couple questions I had and they said she's the first patient they've ever had to swallow this pill! Yet again, Charlotte surpasses our expectations. Yet again, she over comes. She is repeatedly asked to step up to the plate in front of her, and sometimes she just doesn't want to, but she does it anyway. She does these things and it's like she knows she has to. She knows it's part of her lot in life and sometimes she hits a base hit like today, sometimes she hits a foul shot but she gave a good try, and I doubt she'll ever walk because God has decided her road will not be for walking, but I just bet one day this little one will hit it out of the park. And wow does she have quite the cheering crowd of fans watching and praying for her.
A few Pictures from last couple days where she is finally feeling a little better. She came home from the hospital last Friday and felt just awful most of the weekend. Only yesterday did she seem better. This round hit her pretty hard. She has more energy now, seems more interested in eating, and is less irritable (although severe mood swings are common with the Accutane).
You can see her small catheter in her arm here. This insufalon helps us administer her shot directly into this space so we don't have to poke her every day. She gets a new one each week. It scares her but she cooperates beautifully.
Perking up and being a kid!
My kitchen helper
Size of her pill she needs to take 2x a day every 2 weeks for 6 months. She did it!
Giving her "mimi" a bath
"I won't give up no I won't give in, till I reach the end and then I'll start again. No I won't leave. I wanna try everything. I wanna try even though I could fail."
That's just awesome Charlotte! You are a SUPER GIRL!! I really enjoyed your music too!Sending you lots of love, hugs and kisses!
ReplyDeleteAunt Debbie
Making me cry Super Girl
ReplyDeleteWhy should we be surprised?
You just keep kicking butt
Love you to pieces
Pops
Such a PRECIOUS moment and testament of your strength Jennifer! So beautiful. I melted when Charlotte went up on her tippy toes to play her guitar and sang along as was goofy and bright. Thank you for recording and sharing this successful pill swallowing celebration with us!
ReplyDelete