Interim Maintenance Updates

Hi Everyone! We haven't posted much lately because there's really nothing new to report. This is great news. Basically means that we are following protocol with treatment and it is working. Currently Cooper is in an interim maintenance phase, which means he gets 2 rounds of chemo every 10 days and also has 2 lumbar puncture spinal chemos in this 56 days. Compared to his other 2 phases, this one has been EASY! Keep in mind that east is relative to the last 2 phases which were complete doozies! Cooper has been feeling pretty great and has been able to do some "normal kid" activities within reason and with some pretty strong precautions but he has been able to get out a few times, which has been nice. He still has days where he is exhausted, doesn't have energy, and is nauseous, but the majority of days are good days.l Each chemo he receives during this phase is what is called an escalating dose, which means if his ANC counts are above a certain level each week they will escalate the amount of chemo drug that they give him. If he doesn't make counts, then they will hold chemo and delay. This is giving his body recovery time before we head into his most intense phase starting on the 28th. Basically, they try to "trick" any leukemia cells that may be living in his body that they can't detect. The recovery tricks those cells into thinking they can come out or start multiplying again and show themselves, then they will get hit hard with this last phase of chemo basically as a last ditch effort to knock it all out. Cooper's blood levels have been great throughout and he has been able to escalate the dose and tolerate it pretty well.

Tomorrow is his last treatment of this phase and then he gets 21 day off!!!! Woo Hoo!!!!! Merry Christmas to us! Now, last time he had a 14 day break we ended up in the ER with a fever...so lets hope everyone stays well for the holidays.


 A little snow day fun in November




Cooper is currently in physical therapy in order to combat some neuropathy in his legs and his feet that is being caused by the chemotherapy. He loves the physical "fairy" and thinks this is the most fun thing in the hospital by far. He gets to play games, play basketball, ride scooters. God bless his physical therapist Briel, because he takes that girl on a merry chase EVERY week!

Cooper is really starting to handle his port spike quite well. It's a pretty sizable needle and it has caused a lot a anxiety and lots of getting used to, but he is handling it like a champ. 
 Last treatment day was a triple whammy. He had to have anesthesia for spinal chemo as well as 2 IV chemos. He hadn't had the anesthesia in about 4 weeks and was pretty loopy when he woke up. He asked his nurse if the make a wish foundation could find him a cheese themed Disney cruise to go on.
Cooper got cleared to get back on his ice skates!!!!! He did a great job and was so much stronger than he was back in August. This was a huge win for Coop. We were so happy to see him back on skates!


Comments

Post a Comment

Popular posts from this blog

Beginning of the Road

18 Aug 2018 So it begins... There are certain days in your life that you will always remember - wedding day, birth of a child, the day you bought your first home, graduations - you get the idea. Unfortunately not all these dates are remembered for a positive reason... It is with absolute heartbreak that Kristy and I want to let our family, friends and loved ones know that on Aug 18 2018, our son, Cooper was diagnosed with child leukemia.  I cannot put into words how we are feeling or even if we have fully comprehended what this means for us as a family.  As most of you readers probably know, Kristy and I were blessed to welcome Evyn Wylde Trueblood into the word on 15 Jul 2018. So adjusting our lives to a newborn and a family of 4, to now have this news is more than we ever thought we would be able to handle. I am opening this page mainly for three reasons.  First and foremost to remember Cooper in your thoughts and prayers.  Our God is the creator, great healer and more impo
Read more

Snacks, Hair, and a Dose of 5 Year Old Perspective

Everyone thinks their own kids are the best. That's every parent's right as their guardian.  We are obviously bias but we can't help but look at our kid in absolute awe with how he is dealing with this situation. Nothing like your 5 year old setting the record straight with a bunch of grownups who feel like they're trying to get their act together. From the beginning we have done our best to be completely honest with Cooper about what is happening to him. Granted, this is a tall order to try to make sure to explain a life threatening disease in a developmentally appropriate way. Those of you who know Cooper well, know that he is a very literal kid, a straight shooter. You'd better be honest with him or he will be the first one to call your bluff if you aren't. It is this wonderful quality that Cooper has that will most likely earn all of his classroom teachers a nice bottle of merlot for Christmas. Cooper is also a very observant kiddo, he's a watcher...he
Read more

Last big intensification push: It has begun

Image
So on Friday we did not make counts to start the second part of intensification, so we went in Wednesday and Coop made counts like a boss! It was such a long clinic day, but we were thankful to go home. We were the first ones there and the last ones to leave. We barely got out before they would have had to admit us to inpatient. Luckily this week, Kristy was able to attend clinic with Coop too. Last week she was getting over the shingles and couldn't go to clinic as a precaution to the other patients there. Good old stress induced shingles...Ugh....just what every parent with a baby and an immunocompromised kid needs, right?  Cooper actually got out on his bike during the few days we had after he didn't make counts. We figured if he was asking to go outside, he was feeling much better and we had a pretty good feeling he would get going on Wednesday.  Cooper had the choice to leave clinic and keep his port accessed at home for the home care nurse to come out and admin
Read more