At long last we get to go home. We pretty much begged the doctors. They finally decided it was ok to go as long as we were really careful and went home on IV antibiotics. We were so excited. The staff came in a sang us a farewell song. All of the people you see there (and many more) have taken care of us at one time or another. All of the staff have become a second family to us. They were all so excited for us it brought tears to my eyes. In fact I was teary the whole day. Randomly wiping my eyes at the thought of being done. We did it!
This is the cancer bell. It is center to all of the "pods" that the rooms are on. We would walk by it time and time again waiting for our turn to ring the bell! In case you can't read it it says, "Ring this bell, three times real well, its toll to clearly say, my treatments done, this course is run, now I am on my way!" The ringing signifies hope to all the other patients. Its tolling is loud enough to be heard in any room. When someone rings the bell you stick your head out the door and cheer for someone that has won their fight! It is a clear statement that you are joining the ranks of cancer survivors and will not be coming back to these halls! Critter wasn't sure what to do but I had to wipe tears away as I filmed this.
There are some statistics that terrified me. Because I was afraid of these numbers I rarely spoke of them even to Jason. Current cure rates for AML pediatric patients are 50%. Half. There was a 50% chance they couldn't cure this. There is a 6% mortality rate while in treatment. That means that 6% of AML patients die during treatment. The drugs are really tough on them and sometimes their bodies can't handle it. Usually they die from an infection that doctors couldn't control. When Critter was really sick during his fourth round this statistic wouldn't leave me alone. If we survive treatment we get to add 6%! Ringing this bell meant that we have a better chance of keeping Critter forever! It meant an extra 6%! When your trying to pass the test of life 6% is a huge number! With Critter's favorable chromosomes the latest studies would give him a 74% chance. So with chromosomes and making it through treatment the docs have given us an 80% of a cure!
With our 80% we hit the halls of the hospital for the last time! Critter has gotten used to his mask and will wear it sometimes. Once his counts recover completely we can ditch it for good! For the next few weeks we will have labs drawn and they will monitor how he is doing. Once his labs recover completely (they say 4-6 weeks) they will pull his central line. It will be an outpatient surgery to pull his line, but they say it is really minor. Once his line is healed he will be a normal kid! He can go to church (just in time for nursery!), he can take a bath, he can wrestle with his brothers! We will be going back every month for the next 2 years for labs and clinic visits just to make sure. Usually when they relapse it is in the first 2 years. After 2 years the chance of a relapse is really low. If he goes five years without relapsing he is considered cured! Most Oncologists will see their patients yearly until they are 18! Looks like we have made some lifetime friends!
On the way home Jason and I just kept saying "I can't believe it. We made it. We're done!" We have taken it day by day for so long not being able to face what might be in the future, now that we are done we can't believe it! When we arrived home I started crying again. Our wonderful friends had put up a banner welcoming Critter home! On the back of every card were notes from different families with words of love and encouragement! We would have never made it without the support from so many people! I know I have said that so many times on this blog but it is so true! I don't know what I would have done. I was always so confident that my other kids were happy and well cared for no matter where they were. That was priceless! We have had so many dinners brought in to feed my family. We have had people call and drop by. We had the Critter walk that paid our cancer bills. We have so much love and support I couldn't possibly ask for anything else! Thank you for everything!
We are so excited to get our household back to normal. Critter is adjusting to sleeping in his crib again. Luke and Dallin are adjusting to doing jobs and homework again. And Jason is actually going to do his paper work for work again! I am just so excited to be home and be part of it. I think my only regret would be that I did get a lot of books read at the hospital and I don't get as much time at home. Oh well I really don't need to read that much anyway. I will keep blogging to follow up on his care for a little bit but I'm sure it wont be as frequent. I hope it will be boring at my house. Thank you for joining us in our journey!
so much joy
4 weeks ago