Thursday, April 20, 2017

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. 

Tuesday, April 4, 2017

4.3.17 :: Treatment Update

Somehow we find ourselves at the end of the Sammy's chemotherapy protocol. He is now entering day 21 of this cycle. The fifth and final cycle of Headstart III chemotherapy. We are now preparing for the next phase of Sammy's treatment. We hang in the balance as we wait to learn if Sammy's treatment was successful or if we will have to attack his cancer with a Plan B. We have been full of stress leading up to this week. I found myself more and more anxious as the days ticked by this round, knowing this was the moment we were leading up to. The moment where we learn the answer to the question we desperately want to know the answer to. Did the chemo work? Is the chemo working? Has the tumor grown back? Has the cancer spread? We want to know. But are we ready to hear the answers. Are we really prepared for what the results may be? There are very few times in this journey that I have let my mind wonder. And as this moment got closer, I started to allow those ugly thoughts into my mind. The reality of what if the chemo just was not strong enough? What if the cancer was just smarter and stronger? Do I have the energy for round two with this stupid ugly cancer? Can I face the reality of our journey be extended that much longer? Can I face my child and tell him the hard things? I try to not stay visiting these thoughts too long. But we do have to be ready and prepared for the worst. Prepare for the worst, hope for the best. It is how I have lived my life as a parent. Ready for whatever blow comes my way, and ready to strike back. This is the first time in my life where I feel I do not feel ready for the blow that may be heading our way.

Sammy will be going for an MRI in the afternoon. We are not sure of the exact time yet, but are told it will be sometime after noon Arizona time. He will once again be put under anesthesia for this scan. The MRI will be of his brain and spine. This will be what defines our next move. Being able to move forward with Bone Marrow Transplant, or figuring out a plan B.

He is also scheduled for his BAER hearing test while he is under sedation as well. This again is to verify his hearing has not be harmed by the chemotherapy drugs. We are hoping no change continues to be detected.

This whole week is full of various tests and scans in preparation for Bone Marrow Transplant (BMT). The plan right now is to do all his testing this week. They will be testing pretty much every body system, so we have few surprises during BMT. Any issues could become life threatening if gone unchecked during the transplant process. We will meet with the team on Friday to go over results of everything, and to further discuss what BMT will look like for Sammy. As of now, Sammy will be moved to BMT on April 19th. It is same floor, different room, different team of people. They move us rooms to give him a fresh, clean room for the transplant process.

Yesterday, we started this evaluation process. Sammy had his GFR test, which evaluates his kidney function. This requires him to go to nuclear medicine, where they inject a radioactive tracer into his blood stream. They then do blood draws at various intervals, which are then evaluated to see how well his body is filtering his blood. Kidney damage is one of the many side effects of chemotherapy. A decrease in this function changes the dosage for chemo drugs used for the BMT.

Sammy also had an EKG done. To test his heart function. To make sure he does not have any concerns with how his heart is working. They also took him down for chest x-rays, to ensure his lungs are healthy and clear as well.

I am not entirely sure what other tests will be occurring over the next several days, but I know he will have a bunch. Including a ton of labs using his blood. So we have a huge week ahead, with lots to take in. The biggest hurdle being his MRI.

PRAY for our hearts to be still and at peace. PRAY for our minds to be clear and not wonder. PRAY for Sammy during his MRI. That he is filled with comfort and peace. That he does not feel anxious going into the procedure room. PRAY he is calm and wakes feeling calm. PRAY he comes out of sedation easy and without any complications. PRAY that the scan is without questions, that any spot been seen, if there is any. PRAY that for full healing of Sammy's brain, for no evidence of cancer. PRAY for our marriage, that we draw near each other in these difficult moments. PRAY for Logan as he is adjusting to more change (I will post more about this later). PRAY for our family over the next week, as we learn more about what's next for us all.