Hope everyones Christmas and New Year holidays were as good as ours. Madi had a break in treatments that allowed us to do our usual traveling to see and spend time with family.
We always have a great time and enjoy being able to visit will friends we don't get to see often when visiting the church family there, as well.
While Madi's schedule didn't include chemo we did have to go in for a blood check (CBC/CMP and lipase) on the 28th. This was actually the first time the older two kids got to go with us.
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| Wilson side of family - all 25 of us! |
While Madi's schedule didn't include chemo we did have to go in for a blood check (CBC/CMP and lipase) on the 28th. This was actually the first time the older two kids got to go with us.
I think they had fun and Madi liked having the big kids to play with for a change. Caroline walked around like she owned the place and Gretchen worked hard to avoid all visual contact with needles. (G and needles don't mix... to say the least.)
By the end of appointment, something occurred to me - I think my younger kids may be getting a little too comfortable at the Pratt Center.
Numbers for the day:
WBC - 4.5
Hgb - 11.7
Plts - 293
ANC - 2385
Madi got to start 2013 off with a bang. January 2nd got to see the beginning of new medicines and new procedures. That morning she got to take her first of 14 doses of 4mg dexamethasone (DEX). This is not one of our favorites. We were in the pediatric cardiology department at Mercy by 8 am for an echocardiogram. (One of the medicines, doxorubicin, has the potential to thin the lining of the heart and they needed to make sure all was well before administering it to her.) She was then at the Pratt Center to get accessed and have a blood draw at 9:15. We had just a little time to kill, so she got to play with Mr. Tom, the tutor provided by Friends of Kids with Cancer and I got to work on my Bible lesson for that evening.
It was then on to Test & Treatment at Mercy Children's hospital for an LP at 11:30 arrival at 10:30.
I always get somewhat of a reality check on procedure days. When all the machines are hooked up to her, crazy concoctions are being pumped into her little body and I sit waiting for her to wake up, it brings home the fact that she really is sick and has a battle to fight.
A special thanks to Stewart and Johnna for coming out and watching the kids for me. If it had been only the little ones with me, I might have tried taking them. I just couldn't fathom having all five kids along for the ride, no matter how good they can all be. 7 hrs is a long time for any kid. My friends swooped in and saved the day, and my sanity!
Numbers for the day:
WBC - 11.4
Hgb - 12.0
Plts - 269
ANC - 9810
About all that happened on Thursday was this:
Friday was a bit better and she even managed to go to school. A huge surprise for both of us, I think. She was exhausted by the time she got home, but she has yet to go to the school nurse during the day and ask to come home. So proud of her!
Saturday saw us back at the Pratt Center for another chemo treatment. This time it was Peg-asparaginase. It was an hour long push, so we decided to get comfortable with our pillow, a warm blanket, goldfish and one of the iPads available to the kids at the center.
Numbers for the day:
WBC - 6.7
Hgb - 12.7
Plts - 341
ANC - 4420
Sunday found her back on the couch or in Daddy's recliner watching TV or napping. She also had her first vomiting episode as a result of her treatment. Nothing too violent, but another reality check for us all. She then asked for chocolate milk and beef jerky for a snack soon after that. (I'll wait. Go on and have your own little 'episode' now that I shared that.)
Today, Monday, she is home laying around for the most part with little spurts of energy here and there. We will head back over to the Pratt Center Wednesday for yet another treatment. (sigh) I know Madi is getting tired of this, but she is being a trooper! Thankfully, she takes her last of 14 doses of DEX on Tuesday night and then will get a 7 day break after Wednesday's treatment.
Back to the dexamethasone. This little pill was part of Madi's first month of treatment. (blah!) It's a different dosage this time, but still has the same results. After just one dose, Madi was withdrawing and not talking, she had anxiety all morning, and overreacted to just about everything. All of this has evened out a bit over the past few days, but she is still not our bubbly Madi. The longer she is on it, the worse her sleep patterns are affected, too. She will be taking some melatonin tonight so we both can sleep a little better.
With the combination of chemo and DEX, her appetite has been next to nothing, as well. She has gone from about 43 lbs to 39 lbs. (Olivia, our little Amazon child, now weighs more than Madi.) Mrs. Heather, her nurse on Saturday, ran a quick check on hydration and electrolytes just to make sure all was still good. They really do take great care of our kids at the Center. I'm thinking her appetite will turn around tonight or tomorrow. We have spring rolls, pizzas and taco meat in the freezer ready for those cravings that might come along.
Keep the prayers coming! We really do appreciate them and know they help.
2 comments:
Wow, you guys are all so strong, including Madi. I know like everyone, you do what you have to do, but you all do it also with grace and cheerfulness. I'm so sorry she's back on the meds that make her withdraw. I know that has to make it so much worse for you when your kid disappears. But I know she wouldn't be on that med if it didnt' provide more benefit than bad. We are still praying for her 100% healing! We love you guys!
Thank you! It's amazing how quickly she went back to 'Madi' within 24 hrs of stopping the DEX. We appreciate all the encouraging words you send our way. Love you, too!
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