4.20.17 :: Bone Marrow Transplant treatment update

Yesterday, marked 183 days, a FULL HALF YEAR, since I walked Sammy into the ER at Phoenix Children's Hospital. It still seems so unreal. No one expects this. No one expects to hear your 4 year old child has cancer. Brain cancer. No one expects to spend 6 months straight in the hospital. Celebrating Halloween, Thanksgiving, Christmas, New Years, a 5th Birthday, Easter, and by the time he goes home celebrating every holiday in a full calendar year in hospital. No one expect this. But this is life. This is our life. Living in a hospital room. Charles and I being passing ships most days. Not seeing both our kids everyday. Living in community spaces. Not feeling like we have any control over any of our lives. 6 months. Our life has been hold for 6 months, but also continues to move forward. Nothing in our life seems real, but all of it is real. Not a nightmare we just can't shake. Our life has been displaced and there will be no going back to our life before cancer. All of our lives will never be the same. We all will be scarred. Sammy with physical scars, but the rest of us with invisible scars of the trauma of this journey. But we trudge forward, continuing on. One day, one moment, one breath at a time.

Yesterday, we made our next upstream move in Sammy's treatment plan. We officially transferred care from the chemotherapy team to the Bone Marrow Transplant (BMT) team. This marked the start of the next phase of his treatment, and the last phase of his treatment plan in fighting his cancer. We switched to a new room, a whole one room over. But we needed a clean room to start this phase of treatment.

The next 4-8 weeks will be a roller-coaster ride that no one wants to ride. We have a lot of really hard days ahead. Over the course of the next week, we will potentially face the hardest days of his journey since this started. Sammy will be receiving 3 chemotherapy drugs over the next 6 days, followed by two days of rest, then on April 28th he will have his bone marrow stem cell transplant. Followed by recovery. The chemotherapy he will be receiving is the max doses he can physically receive. They have been calculated out by his kidney function, weight, and height. And he will be closely monitored, so any changes to the doses can be made before next dose is given.

April 20, 2017 : Day -8 : Start chemotherapy protocol for BMT. Sammy will receive Carboplatin. He will also have a catheter placed. They need this to do a collection, so they can monitor the effects of this chemo on his body. The catheter will stay in for a couple days.

April 21, 2017 :: Day -7 : Sammy will get second dose of Carboplatin.

April 22, 2017 :: Day -6 : Sammy will get the third dose of Carboplatin. And catheter will be removed. 

April 23, 2017 :: Day -5 : Sammy will get his first doses of Thiotepa and Etoposide. And will begin having broviac dressing changes and a full showers every 6 hours. So four times a day. 0600, 1200, 1800, and 2400. 

April 24, 2017 :: Day -4 : Sammy will get his second dose of Thiotepa and Etoposide. And will continue the every 6 hours changes and shower. 

April 25, 2017 :: Day -3 : Sammy will get his third dose of Thiotepa and Etoposide. And will continue the every 6 hours changes and showers.

April 26-27, 2017 :: Day -2, Day -1 : Sammy will have a couple days of rest. 

April 28, 2017 :: Day 0 : TRANSPLANT DAY. Sammy will get his bone marrow stem cell infusion.  

April 29, 2017 :: Day +1 and on : Sammy will be recovering from the chemo and transplant, waiting for his numbers to recover. 

Each of these days will present with different struggles, but we will get through. One day, one moment at a time.

PRAY for Sammy over these next several days as we have some very tough and challenging days ahead. PRAY that his catheter stays in place and we do not have to place it again. PRAY that the chemo is effective in killing any remaining cancer cells that are lingering. PRAY that Sammy is protected from all the side effects of the chemotherapy. PRAY he is protected from remembering any of this trauma he will endure and has endured. PRAY for all of us to have comfort and peace over the week ahead. PRAY that we are refreshed each new day and feel energized. PRAISE that we are here in the final part of his cancer treatment. PRAISE that Sammy continues to recover from posterior fossa syndrome. PRAISE that we have continued to be blessed as needs arise.