13 February 2014
This is one of the hardest posts I have ever written, and I apologize for the delay....but we as a family needed time to process it all and be together.
As a parent, the moment you learn your child is fighting cancer, you realize that it never ends after treatment and that we are always living in the moment fearing the next scans. Nicky has endured from 8 months old brain surgery that left his left vocal cord paralyzed, he coded 3 times fighting for his life. He has endured 4 doses of high dose inpatient chemotherapy, followed by 30 rounds of radiation and then 6 months of oral chemo. Nicky's blood counts from all the treatment really never recovered fully. We kept him isolated to keep him safe. Looking back, I wish we would have allowed him to do more but I was trying to protect my son.
His MRI on Tuesday showed the shunt was working, this was when we knew the day any cancer parent dreads hits you like a bus. A call from his local neurosurgeon happened the moment I walked in the door with him. The nurse calmly said, I have news ..... There are 4 new lesions that were not present on his August MRI. They are large and the doctor wants you to do a spec test to tell if it's more damage or cancer. We mailed our scans to St Jude and to Boston. I spoke to St Jude last night and our primary somberly said we should start him on steroids to calm the horrible effects we are seeing and to do a biopsy. We discussed that Nicky's not well enough to travel and I asked what would the biopsy do, she said it will just tell us what it is either necrosis or a radiation induced secondary neoplasm malignancy. I said so either way there's no options. We have known this for over a year but now it's happening. She said they do not believe that HBOT helped because it's all gotten worse. The locations are not operable as we have known that for over a year watching this happen also. They do not believe it's his initial cancer because his cancer was aggressive and it would have been far more aggressive.
So today my sweet bear will begin hospice. We have no idea how long we have with our son. We just know he declined quickly. Within 10 days he had balance issues, to falling everywhere, to breathing heavier, his eyes half open and fatigue. We have to carry him everywhere and we are heartbroken our spunky little man is not the same. He's in pain so meds started to keep him comfortable. He lays in front of his big brother while he plays and lays on our couch most of the day. Naps are getting longer. This is so difficult.
Some people are reading this are thinking we are giving up, not at all. If there was anything we truly could do God knows that would not compromise his quality of life anymore than we already have - we surely would already be doing it. But our son's quality has been compromised from treatment we know for a fact he was over radiated and sadly our doctor at St Jude has abandoned us and has never spoke to us since Dec 2010- he has a grade 4 hearing loss in his left ear and a grade 3 loss in his right. He can barely communicate because he can't hear everything the way it sounds. We are left guessing what he's saying and he get upset because we can't understand him. He stopped growing this year which means he most likely has endocrine issues that would require daily shots. - and tantrums that he doesn't understand no or why that last 45 mins to an hour or more . Quality of his short little life has always mattered more to us and keeping him happy and comfortable. When we went into the hospital and they handed scrubs to him he screamed and it breaks my heart what he endures and can't understand why in the world do I have to do this.
I ask God the same thing ...... But I won't have an answer. What I know is that Children are a precious gift from God and God lends them to us to teach us, to make us grow to learn to truly love unconditionally. God, is clearly calling my baby home and we are devastated. God blessed us with such a sweet little boy, but he never promised that we could keep him or for how long, because our Nicky is a child of God. There is nothing worse that a parent can go through, I know this because too many of my friends have lost children and I walked them through the process and helped. I truly don't know how to live without my Nickybears face everyday - his sweet kisses and telling me momma no cry, no cry and hugging me. This intense pain is surreal and we have no gauge on how long at all.
So many of you are praying and we ask you continue to for us all because As we walk through the darkest valley, I will fear no evil, for you are with me says our Lord. And so we pray for unimaginable strength and comfort for our Bear.
So many of you have given us support and ask what in the world can I do, you can pray.. And then pray even more as our hearts are forever broken. When we get in a pinch maybe come hold the babies so we can focus on all the time we can snuggling our Bear. We've already had dear friends load up our frig - thank you so very much the Scalise Family. And Uncle Nick Thomas, thank you for the movies - they came just when we wanted one the most today.
Please know if we don't call back or text or Facebook - we are really trying to cope right now and your support means so very much to us. We will forever be in debt to you all for everything.
I want to thank God for allowing Nick and I to be Nicky's parents,we couldn't love him more no matter how hard this journey has been and will continue to be. I want to thank a God for showing us under the worse pain imaginable that he gave us 4 years to love this little boy all we could and will continue to. I have always said, Gods Hands and now I realize he soon we be in Gods Hands, and while our human hearts just selfishly want him here .... He will be with our Father, no better Hands to be in- I guess that's arguable because Momma and Dada think we our arms are a great place to be - oh Lord be with us all.