After our appointment on Tuesday we proceeded to lower Kassidy's dose to 330 ml on Bag 1 and kept her at 40 ml on Bag 2. She wanted to give it a try, but after lunch she said she wasn't feeling well. :( She ended up throwing up all her lunch! She was so disappointed because by lowering her dose that would mean that she would only be on treatment about an hour and half vs. 2 hours and 10 minutes and have a break of over 2 hours between treatment. A bit more freedom from the backpack. It just gets tricky sometimes fitting in medicine bag changes, dressing changes, blood draws, and even showers in between her treatment times, since it gives us such a small window of time and sometimes sleep is a bit more important than all those.
We asked her at that first vomiting episode what she wanted to do; if she wanted to go back up in dose or stay at 330 ml like Dr. B had said we could do, but she said she would try to tough it out and try again for the next dose. But that night after dinner she threw up again! So we suggested we try 400 ml on Bag 1, not exactly maximum dose, but a bit closer. So we reprogrammed her pump and in the morning she was feeling worse. Ugh!
We packed all our things and headed over to the clinic to get her some more fluids since again she had been throwing up everything she ate or drank and we wanted to make sure she did not dehydrate and felt completely bad on the airplane ride. We decided at the clinic to put her back at maximum dose of 500 ml on Bag 1 and worry about weaning her slowly when we got home. She's always been so sensitive being on ANP that is just makes more sense to wean her a couple ml a day than too much at once.
So today we are at 470 ml and are hoping all goes well. We have kept her home today just because she is exhausted and would like to give her more fluids and to make sure she keeps food and water in her stomach. All this is just a reminder that she is still not out of the woods, that the fight is not yet over!
We are hoping that by lowering the dose, the tumor does not grow in these next 8 weeks so we can continue to keep weaning. We also hope that eventually the remaining scar tissue is absorbed by her body so it doesn't cause any side effects even when she's completely of ANP. We know that she can live her life with the scar tissue or necrosis, but in truth it is still a foreign mass that remains in the brain that shouldn't be there and unfortunately can't be operated on.
Dr. B feels that it will probably take another 8 months to wean her completely of ANP if all goes well. Hopefully less, but we will take 8 months more. So she will be carrying the backpack for a bit longer. The great part is that as we lower the dose most likely she will need decadron less and less. That in itself is success! Also, she should feel better and better and maybe be able to start exercising, feeling less tired and who knows what else. WOW!!! God is great!!
It's been such a great couple of days. All of you know we got the chance to go to Reno to watch Kassidy's Centennial softball team compete in the State Championship playoffs last week. Well we arrived last Thursday just in time for the first game which unfortunately they lost, but it was a double elimination tournament and they worked hard through the losers bracket and made it all the way to the championship game on Saturday. Kass was so excited that she would spend Saturday (1 year anniversary of her diagnosis) watching her team fight for the chance at State Champion. The hard part of this game is that the team they were playing for the championship was undefeated thru the tournament so the Centennial girls would have to beat them twice back to back.
Can you guess it??? They did it! The girls all played their hearts our and they 10 run ruled Coronado HS twice. The first game they won 13 to 3 and the 2nd game they won 11 to 0. Such an amazing moment to see the girls finally win their State Championship with Kass watching. Not only that, but notice the final score! 11 to 0!!! Kassidy's jersey is #11. WOW!!!!
|Final Score 11 to 0|
|Kass getting her State Medal as the stands stood and cheered!|
|The Fab Five!|
|Kass and coaches!|
|Centennial Softball Girls State Champions!!!!!!!!!!|
We were all sooo emotional! Each girl had again vowed to play for Kass that day. That this year would be won in Kassidy's honor. Amazing day! It was exactly what we needed that day. Another great blessing from God.
Here is the article in the Review Journal:
Also, that next day on Sunday my aunt Ana from Panama did a walk in Kassidy's honor in David, Panama. More than 300 walkers walked for Kassidy that day and most of them have never even met her. Pretty amazing!!! A prayer was said at 11am for her and I know that God heard.
|They carried giant posters of Kass thru the walk.|
|My cute aunt right behind the poster carriers she organized it all. She's been one of greatest supporters. We are luck to have her in our lives.|
|All the walkers! Thank you!!!!|