March 31, 2018 : One moment

One moment changes everything. This journey with Sammy has been filled with these moments. More of these moments than any one person should have to endure. Any parent should have to witness. Over a week ago, we were told there is nothing more that can be done for Sammy. Our options were ones we were not willing to make Sammy endure. He has already suffered enough. We want Sammy at peace. No more suffering. No more pain. We want our son to be free. We are doing everything we can to keep him comfortable. He is on a continuous flow of dilaudid, with bolus available every 10 minutes. To be given as we see fit for keeping him comfortable. He is also on Valium and Haldol. It has been a struggle to find the right balance for what works for Sammy. We hopefully have found the combination that works. We will be constantly adjusting his doses as he progresses.

It has been a very hard couple weeks. We have had some great moments with Sammy, but also many very difficult ones. Ones that will tear your heart out. Watching Sammy suffer and being unable to give him any relief. It breaks my soul. I wish I could endure it all in his place, take his pain from him. Take all this suffering from him. The past couple weeks have been filled with moments I would love to forget forever. Conversations no parent should have to discuss. Calling mortuaries. Picking out a casket for our 6 year old child. Discussings funeral plans. Wishes for a memorial service and burial. Getting things in place, while we have the strength to do it. Lining up the support so when the time comes, we can have others take care of most of it.

Watching and waiting is hard. Sammy changes day by day. Things are progressing slower than anticipated, but can change any moment. We may find he is having moments of awareness right up till he passes, or he may go into a comatose state prior. We really have no idea how things will progress. We just keep monitoring all the symptoms and signs. Waiting is the definitely the hardest. And while we have finally gotten him to a good place with his medications, everything is fluid and constantly changing. So we are always adjusting. Good moments turn to bad ones quickly.

Charles and I are pretty exhausted. We are trying to get better rest, but nights seem to be hard all around. Logan is struggling with sleeping. He is certainly reacting to all the emotion of our home. So we are trying to support him the best we can. He is certainly having a rough time with things right now, being an almost 3 year old in this situation. We are working on giving him attention and supporting his needs through this process with Sammy the best we are able. With Sammy it is just a lot of work. Medications around the clock. It takes a couple people to move him from one space to another. He keeps us up and busy. But we are working on getting a better plan and support in place.

We do have some nursing care, but it is not around the clock. We have some nights covered and we had some days covered, but it is not 24 hours a day. If we feel we get to a place where we need that type of coverage, we will have to really look at transitioning Sammy back to Ryan House. That would be the next step in increased coverage and support for him and our family. We are looking at taking him back for end of life care, but we are not sure when we will be making that move. Right now we are trying to listen to Sammy to see how he is doing, as we do not want to go sooner than necessary, knowing his wishes.

It is all just hard. We know Sammy wants to be home, but home we do not have the full coverage and support all the time. We can call and have on call nurses come to make changes and support us. It just is not the continuous care we could use. Moving to Ryan House add a lot to our care plan, but ultimately as long as Sammy is aware of his space, we know he wants to be home. It is hard, and our team is very understanding and all are supporting us with his goals in mind and our goals in mind. But no one has a crystal ball to tell us how things will happen and when. So we continue to make the best choices we can with the information we do have concerning his health.

Please continue to pray for our family. Just cover us. Our hearts are so heavy as we continue in the days ahead. Pray for our marriage. Pray for our family traveling here. Pray for Logan. We each need to be constantly covered with prayers of strength, courage, peace and comfort.

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Photos captured by Buchanan Photography

Sammy's Got Your Six

One month from today, on January 16, 2017, Sammy will turn 6. Six years old! We are so excited to get to celebrate Sammy turning 6!

Last year Sammy spent his birthday in the hospital, as he spent 2/3rds of the year in the hospital. While we tried to make his birthday something awesome, it was a bit difficult to do while isolated in a hospital room. We were beyond blessed by the out pouring of birthday cards mailed to Sammy, showing our family that we are far from alone in Sammy's fight. And absolutely made Sammy smile. He loves getting mail. With Sammy turning 6, we want to do something amazing to honor him and begin to build a legacy in his honor. This will likely be Sammy's last birthday with us, meaning he will likely be forever six years old. We hope for his miracle, but we are preparing for this to be our last with him.

 

In our military and law enforcement family, the number six is used as a code word. "Got your six." Meaning got your back. I am watching out for you, protecting you, covering you. In our journey we have very much felt our backside being covered, we have been provided for in so many ways, and know we are always covered in prayer. Many have our 6. Sammy's 6.

We want Sammy's birthday to be a way to pay it forward, this year and every year. We want Sammy to be able to stand behind at least 6 families that are fighting this fight, a child fighting childhood cancer. We want to shower these 6 families (more if we are able) with gift cards that will help ease their burden during their child's battle with cancer, so that they can focus on what matters most. Their child.

We would be honored if for Sammy's birthday, you would send him a gift card to pay-it-forward. These can be to grocery stores, gas stations, shops, entertainment, restaurants, amazon, or cash gift cards. Cards can be for as little as $5 or for as much as you are willing. We hope you will have Sammy's 6, for his 6th birthday.

Please mail birthday cards for Sammy's Got Your Six celebration to Super Sammy, 1934 E Camelback Rd #120-239, Phoenix, AZ 85016.

#supersammystrong #hopeforsupersammy #childhoodcancer #medulloblastoma #morethan4 #igotsammys6 #supersammyturns6 #sammysgotyour6 #gotyoursix

9.2.2017 : Relapse

It has been a very overwhelming 24 hours digesting the devastating news of Sammy's relapse. We just were not expecting this news so soon. While we knew this was a very definite possibility, we just thought we would have more time before having to fight again.

The truth is about 3 months ago, I found Sammy's pathology report when looking for documents in his medical records online. This pathology report confirmed his medulloblastoma diagnosis, but it also sub-typed his tumor. Medulloblastoma has 4 sub-types. WNT, SHH, Group 3 & Group 4. Group 3 and Group 4 would be the least desirable sub-types, as have basically a 1 in 2 chance of 5 year survival, or just about that prognosis. Sammy's tumor was sub-typed as Group 3 with 70% confidence, with a few markers for Group 4. So for the last few months we have been processing and really coming to terms of what that means for Sammy. Not putting much weight into statistics. But knowing that the chances of him fighting again were almost certain. Especially since we chose a chemotherapy only treatment plan. Which we still feel was the absolute right decision for his treatment, despite the outcome. It gave us time.

Sammy's cancer has returned and with vengeance. It has spread to the lining of his brain, his spine and a spot near his pituitary gland. I do not know how much is there, only where. From our understanding it is not a solid mass (like when he was first diagnosed), but a diffused spread. This will lead to a very difficult fight. We do not know our options yet. We will be seeking what is possibly available, most likely looking at Phase 1 and Phase 2 protocols. We are meeting with Radiology from Mayo Clinic tomorrow (Sunday) to discussion the possibility of Radiation. We would only choose this route if the quality of life is worth the risk. Radiation comes with a lot of sacrifice to quality of life. But it is an option we have to explore, as radiation is the most effective treatment for medulloblastoma. Our hospital has tumor board on Wednesdays, so they will be discussing Sammy's case in depth at that time to come up with our options. We will be meeting with his team on Thursday to discuss these options and come up with a plan.

In truth, any treatment we do will be a dart in the dark. No guarantees on anything we choose. Not that there are any guarantees when cancer is involved, especially childhood cancer. Sammy is entering a fight for his life. And we need all the support and prayers for our family, as we make some of the toughest decision any parent will ever have to make. We will be taking time as we move forward to cherish the time we have ahead with Sammy. Making the best of the time he is feeling his best.

As of right now, Sammy is being discharged tomorrow (Sunday). There is no reason for us to stay inpatient, as he is feeling okay and we do not have a current plan. We all agree that going home and back to normal life is best for him. We as a family are quickly planning a trip to Disney for a week from now to spend time making some memories. To give Sammy some time to be a kid. Several members of our immediate families will be joining us, so that we can celebrate life together with Sammy. Our families will be traveling across the country to join us, as none are local to us. We would be beyond blessed to receive any assistance in helping towards the cost of our Disney adventure. Our chance to have a magical time with Sammy while he is feeling his best.

Please surround our family in prayer. We have a very hard road ahead. We have faith knowing that God can do miracles, and we very much are hoping for a miracle. But we also know God already wrote Sammy's story, he already knows the final period. His will just may not be the desires of our hearts. And that is very hard to understand. But we are trusting that God will carry us from one minute onto the next for where ever the journey ahead takes us. God has a plan. I know that Sammy's life has a purpose and we have already seen the impact of this short life on those around us. These things are easy to say, but are going to feel impossible to live. Our lives are filled with a pain and heartbreak that only God can heal. Sammy is special and his fight is not over. Cover us in prayer. Share our journey.

Picture is from this evening. Our friend brought Logan, and her oldest son (who is Sammy's best friend) to come spend some time with Sammy tonight. It was absolutely wonderful to see and hear.

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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. 

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.

Worth Every Moment

It's hard for me when I let life slow down, and I take moments to reflect. 127 days ago our son attended preschool. I picked him up from what was just another day. And within hours arrived at the ER where they did a CT, and found that our precious 4 year old son had a massive brain tumor in his 4th ventricle. The air was sucked out of my lungs. For a moment I froze. It took me hours to call anyone. I didn't want this news to be true. And by sharing it, it would be fact. I couldn't let the words leave my lips. By 11pm the word cancer was dropped like an unwelcomed and unexpected bomb. 

I never thought this would be our life. How did we end up here? You never think it will be your child. Until it is. And you definitely never expect it to be your child. 

127 days. 18 weeks. That is the time we have spent in the hospital with our son. We have watched him through every moment. Every scream, every cry, every sleepless night, every puke covered pajama change. And every pee soaked bedding change. Every needle stick, every poke, and every blood pressure reading. Every therapy session. Every smile, every laugh, every word he's spoken, and every word unspoken too. Every chemo drug, every blood draw, and every blood transfusion. Every drip of IV fluids. Every sunset and every sun rise. We have been here together. Fighting for him. Fighting together. Waiting.

Our journey is still beginning. His story is only just starting. Cancer will forever be a part of his life. It will forever stay with him. Through the scars. Through the lasting side effects. Through the damage left to hopefully save him. Through the tests for many hopeful years to come. His life will forever be altered, no matter how this leg of his journey ends. Cancer will always haunt us. It will never be a distant memory, but forever apart of our everyday lives. 

Sammy has logged 127 days in this journey. And still has at least that many ahead. We are hopeful he will get to go home before the start of next school year, but nothing is guaranteed in this journey, or in life. It is still hard and overwhelming to process that this is our life, our new normal. This shouldn't be our normal. It shouldn't be anyone's normal. But yet, here we are living this life. Living it each day. Each minute. Each heartbeat. Living it for him. Fighting with him. Because I couldn't imagine a life without him in it. 

2.11.17 :: Treatment Update

Right now we are in the waiting game, as Sammy begins his 4th round of chemotherapy. He was due to start chemo on Wednesday, February 8th, but they had to delay the start of treatment. His blood counts (ANC) were not where they need to be in order to start this cycle. They need to over double from where he stood yesterday. They were around 450 and need to be at least 1000. After discussion with his oncologist, Sammy received another dose of medication used to stimulate cell growth, in hopes to encourage his counts to start rising. We can not begin the next cycle until this number is up where it needs to be. We are definitely starting to see the effects of the chemotherapy on Sammy. This is one of them. It just takes time for his body to recover from the high dose chemo his body is receiving. I am waiting to hear the results from his labs today and where we stand in this process. UPDATE 2.11.17 @ 1130MST :: His counts went up from 450 to 6,500! They will being doing one more nuepogen shot today. They are doing this to be sure the reading is accurate and that the level maintains after the initial flooding of cell growth. They will keep tracking for a few days. And plan will be for him to start chemo on Tuesday or Wednesday.

On Tuesday, Sammy had his kidney function test, and his hearing test. The kidney test is giving nuclear medicine and doing lab draws to track how his kidneys filter out the medication. Sadly, this test did not go as well this time for him, as it has in the past. This time his kidney function came back just outside the low side of normal. The oncologist will be making some changes to his chemo doses based off of this change in his body function. The BAER hearing test went perfect. There has once again been no change detected in Sammy's hearing. Which we can not be more excited to hear. Both of these functions are being closely tracked because a deterioration in these functions is fully expected. Despite the down turn in his kidney function, they are monitoring it and making changes to help. The hearing is something that we are so blessed to hear. As the further out we can have with no change, the less the damage will hopefully ultimately be for him. When starting this journey we were told to expect Sammy to have to have hearing aides when this journey is over. We are now entering our halfway point and the longer out we get the less the impact of constant damage being done with each additional round of chemotherapy.

So for now we just wait. Wait until we get the okay to begin the next cycle of chemotherapy. And in the meantime we keep chugging away and making amazing progress in his therapies. In the last month Sammy has begun to talk and use verbal language to communicate with us. It is hard to understand, but he is trying and he is making sounds and words. It is so sweet to hear our son say mommy and daddy again. And also to hear him say "I love you." His journey is far from over and still very frustrating for both him and those around him, but we are chugging along. Giving him as much support as possible in helping to keep those frustrations down for all parties involved. Sammy has also begun to eat again. It is slow and he is very methodical in his chewing and swallowing. But he is doing it! His quantity is not very high as he is not used to having "meals." His g-tube feeds are continuous, at 60ml/hour. Which is only about 2 tablespoons of food per hour. So even if we stop feeds he really only does a few bites of food as that is all he can handle right now. Once we are done chemotherapy the feeding therapist will work on his meal volume and get him back to eating meals again. For now it is just about relearning the skill. We will focus on what he is eating and how much down the line. Sammy has also regained a lot of his functions. He is now sitting on his own. Still needing plenty of breaks, as it is hard work. But he is getting himself up on his own and sitting for longer and longer periods. We have also started to get him up in a supported standing position and even using a supported walking contraption, which he hates. But he is starting to get weight on his feet again. Our prayer and hope is that he will walk out of the hospital on the day we are finally discharged.

 

Sammy is doing Sammy. Just constantly shocking and awing everyone in his path. We have good days and bad ones, which is to be expected. But he always has his Sammy smile. And each day we feel like a little bit more of our Sammy returns to us. Slowly, but surly he is recovering. His recovery is remarkable. It surprises our nurses each time one comes back to work with us after a couple weeks of not seeing him. They are always amazed at his progress and how far he has come in such a short time frame. They are always surprised at his new skills and all that he is doing from week to week. We are so blessed. And God is so good.

PRAY for Sammy's continued recovery from posterior fossa syndrome. PRAY for continued healing of his brain and for protection from cancer cell growth. PRAY for his kidney function, that they heal and begin to function at normal range again. PRAY his blood counts continue to rise, so to delay the beginning of this 4th round as little as possible. PRAY for continued protection over his little body throughout this treatment process. PRAISE that his hearing has continued to be protected. PRAISE that we are hearing his voice. PRAISE that Sammy is gaining abilities again. PRAY for Logan in this journey and that he is protected from the stress and struggles on our family. PRAY for Logan's sleep, as he is having a hard time sleeping. PRAY for Charles and I, and our marriage. That we are able to continue to carve out time for each other and support each other in the best ways possible. PRAY that we can keep open lines of communication, and that we give each other grace where needed. PRAISE that we were able to spend some much needed time together while family was in town during the last half of January. PRAISE for the support of family and friends stepping in and helping to grant us the gift of time to spend together.