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.

www.facebook.com/smoresamuel
www.paypal.me/pumafamily
www.gofundme.com/pumamedicalfund 

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. 

my strength

Yesterday, a friend in a facebook group posted of her newest nephew, Sawyer, being admitted to the hospital at just 12 days old because he had stopped breathing. Over the last day this little guy has been on my heart. As my friend shared her own struggles of visiting her nephew and sister in the hospital, it flooded me with so many of the feelings we felt a little over 3 months ago. A moment of when your world comes crashing, and the unknown journey. My heart cried out. 

"Praying. Know that infants are resilient. God has a plan. I'm trusting God with my child. Our life crashed 3 months ago when our then 4 year old was diagnosed with brain cancer. In 72 hours time, he went from going to preschool to having a 10 hour brain surgery and being told he has cancer. God is good. And he may not answer the way we want. But God will NOT fail me or your family. I saved this picture two days before my world crashed. It hit me for whatever reason and saved it. Two days later it's the only thing I could picture in my mind. God prepared me. Even now, every time I'm struggling this image flashes in my mind. And I turn to God. I, more than most, understand watching a child when all hope is gone. Sammy's heart rate hit well over 200 one day in PICU. We thought that was it. He wasn't going to survive and we'd have to say goodbye. But he's fighting. We still don't know our story's final page. And it may end in a way we don't want. But God is good and will heal our child in the end. He will be healed in this body or in the next. But God will heal him. And he will heal me and my spouse just the same. My heart breaks for your family, the same it breaks for mine. I pray for strength. For faith. For healing. For comfort. For grace. For peace. And those WILL be answered. But remember, just like for our family, it might not be the way we want. God does do miracles. And God absolutely CAN. He is 100% carrying me from one minute into the next. I'm weak. He is my voice, my strength. That is my prayer."

I am told often how strong I am. I am NOT strong. I am very weak. I joked before this journey began that I was "sawdust held together with duct tape," as I struggled with Charles being away with the Air Force and me struggling to do it all on my own. Barely holding it all together. God is certainly my strength. I definitely am not always all put together. I have my moments, where I do just crumble and breakdown. But even in those moments God picks me up, dusts me off and carries me in his arms through the next moment.

PRAY for Sawyer, his mom, dad, and extended family in their journey ahead. PRAY for healing, that Sammy continues to awe us in his recovery from posterior fossa syndrome. PRAY for healing to his speech, that he finds his voice and can form the words he is desperately trying to say. PRAY for his mobility, that each body part functions the way he wishes. PRAY for his appetite, that he is hungry and excited to orally eat foods each day, as he relearns how to swallow and eat. PRAY Sammy stays healthy over the next week before starting the next round of chemotherapy. PRAY for Charles and I, and our marriage. PRAY for our family to feel rejuvenated each new morning. PRAY for restful nights. PRAY for Logan as he is struggling with our "new" normal. PRAY for Logan to be able to have peaceful sleep each night, as seems to be struggling with nightmares/night terrors. PRAY for Logan's health as he has an ear infection. PRAY for the wisdom of how to parent in the tough moments in both our children's lives, that we know when to be firm and when to give grace. PRAISE for Sammy's progress in recovery, as he is now eating solid foods a few bites at a time. And he is fighting to sit himself up and hold himself in up siting. PRAISE that we are hearing our son's voice again, that he is able to vocalize some words once again. PRAISE that he is making amazing progress with his fine motor skills. PRAISE for the abundant blessing of our needs always being provided and preparing us for the journey ahead. 

1.11.17 :: Treatment & Scans Update

We have had some great news the last few days. The biggest news was given to us yesterday. Sammy's MRI came back clean!!

As you can see on the first MRI done on October 19th, shows where the tumor is in his brain and how it was impacting his brain. The tumor squished the cerebellum portion of his brain out of the way and forced his brain stem to move as well. This caused the hydrocephalus, fluid build-up on his brain, as the fluid was not able to drain properly. The tumor created a dam. The MRI looks unclear due to all the fluid built up in his brain. 

In the MRI scan taken yesterday, shows major improvement. The scan is considered a healthy clean scan. The yellow highlighted spots are believed to be scar tissue, not regrowth of a tumor. The scan is much more clear, as the fluid is being regulated by his VP shunt. His cerebellum has returned to proper position in his brain, and so has his brain stem. 

We are beyond thrilled about these results. This is just a check point in his treatment though and does not change what we are doing. It may have impacted treatment if it had shown Sammy had any tumor growth in either his brain or spine. But he had NONE! It is not typical to have growth at this point in the journey, as it has been only 3 months since last scan. But that does not mean it does not happen. It would have a been a huge game changer if growth was detected, as it means it is very fast growing and is not responding to the chemotherapy. So we have a huge sigh of relief that this scan was NED (no evidence of disease). Happy dance happening over here! 

So for now we keep trudging forward as planned. We are set to start his third round of chemotherapy today. Currently getting him all ready with extra fluids and extra medications. We will hopefully start in the early evening. He will have 3 rounds of chemo still to finish. So this one, plus two more. Then I believe he will have another MRI done before beginning the Bone Marrow Transplant chemo round. That will be our next huge test in the journey. That he has a NED scan at approximately 6 months post surgery, while enduring chemotherapy treatments. 

Along with his MRI, he has had a couple other tests in preparation to starting the new round of chemotherapy. On Friday he had a kidney function test. This is to ensure his body is cleaning out the toxins. That his kidneys are still working properly despite the chemotherapy drugs wearing down his system. His test came back normal. Actually better than normal! His numbers came back above average, and put him in the exceptional kidney function level. Another huge blessing in this journey. We could not have asked for a better report following this test. Praise God. We pray this continues to be the trend during the remainder of his treatment. 

The last test he had done was a BAER hearing test. This is to test his hearing levels and make sure no damage has occurred to his hearing. One of the chemotherapy drugs that is part of Sammy's treatment can cause hearing loss, so they test his hearing before every cycle to detect any change to his hearing. So far he has gone unaffected. In fact from last test to this test, his hearing actually improved! Absolutely crazy. They did say it could be because he had a tiny fluid in his ears during the last test. But I will take it. Every round with his hearing unchanged, means the damage will be less. But we are fully prepared for the chance with each new round. 

So we trudge on. Sammy is due to begin his third round of chemo today. We are doing a slightly different approach to his nausea medication to help be proactive for him. Last round he really struggled with nausea and vomiting, so we are hoping to approach it different and hopefully give him relief before it even gets kicking. Everything else about this round will be the same as the other two. Just another 28 days to put under our belt as he moves forward in his adventure. 

PRAY for Sammy as he starts his chemo today. PRAY that his body is forgiving to him. PRAY he is spared from the ugly side effects. PRAY he feels strong and healthy, despite his body enduring an unforgiving battle. PRAY for restful nights. PRAY for continued healing and recovery from the Posterior Fossa Syndrome. PRAY that our sweet Sammy continues to shine during this next round. PRAY that he is able to continue to endure therapy and progress forward during the days of treatment. PRAY for protection from sickness over Sammy and our family. PRAISE that God heard our cries and blessed Sammy with beautiful scans and healing. PRAISE that he is making amazing progress in his recovery. PRAISE for the constant blessings that our family has put before us along this journey. 

Nourish

Yesterday, we started another new adventure in Sammy's journey. We took control of what he was being fed through his G-tube. Since he began getting tube fed back in October following his brain surgery, Sammy has been on two types of formula. The first was a pediatric formula, similar to that of PediaSure. After a month of ups and downs with that formula and bringing up some concerns I had with what he was getting, we finally got it switched to something else. I was concerned as he was constipated with it and we just could not get him regulated very well. Ultimately it was full of ingredients his body does not tolerate very well, one being dairy. So we finally had it switched to a "real food" formula, called Compleat Pediatric. At first I thought that it was as it said. Real food. Until I read the ingredient list. Definitely NOT real food. I mean it has traces of real food, but it is still a highly processed formula. And well it is just that, a formula. I wondered if something better was out there.

I started to ask around with other parents, what their kids were using for tube feeds. Again and again the name Liquid Hope came up. About this time my mom asked me about what he was getting in his feeds and she too was thinking why are they filling him with processed "junk" when he needs the absolute best in his system while he is fighting for his life. I was completely in tune with her comments and was already thinking in that direction. I just had not had the chance to really do the research and dedicate time to looking up the information. I told my mom to look up Liquid Hope and the company that make it and let me know what she thought about it.

She called back fairly quickly and told me to do it. She gave me a brief rundown of the food and the options available. After discussion, I decided that Nourish was the best route for us to go. It is the new blend made by the company Functional Formularies, that is specific for pediatrics on tube feeds. So I went back to the online support group and asked a few more questions. The first being "Am I allowed to dictate what food I want my child to have in the hospital?" I seriously did not know where the line is drawn for what I can say or can not say in regards to Sammy's care. My question was answered with a resounding YES, you can absolutely dictate what food you want your child to consume. And so our journey to switch his food began.

At first we tried to see if the hospital and insurance would approve it without much difficulty. But difficult is what it became. I found that the company helps advocate for you to the insurance company to have it approved, so we got that paperwork started and in process. It will take some time to get answers back and for all to hopefully be approved. So in the meantime, we made the decision to pay out of pocket and order this new food ourselves. Deciding this was absolutely worth it. We want our son to have the best, giving him strength during his battle. And we truly believe this is the best he can get. But the best comes with a heavy price tag. We will be spending just over $200 per case on this blended food for Sammy. Our hope is that eventually it will get approved with insurance, but until then we will be taking on this additional food cost.

On Wednesday, we received our first case of Nourish. 24 bags of food, 12 oz each. We met with the nutritionist yesterday to have the new feed order put in and his new food rate calculated. We will be doing just over 3 bags a day for him. Which will equal out to us doing a case a week for his feeds. Our hope is that this food will help him stay strong. I am also hoping to see even better changes with his GI track, as he transitions back to a complete real food blended diet.

Obviously, this adds one more expense to our list. Helping to cover this additional cost during his journey is one more way you can be a blessing to our family. By directly donating to us using GoFundme or PayPal. Or ordering Nourish directly from their website and have it shipped to us. Functional Formularies Shop. We would be absolute blessed with help in providing Sammy with his Nourish. 

1.4.17 :: Treatment Update

TEN.

Ten what? Ten is approximately how many bone marrow transplants that Sammy could receive based off the amount of stem cells they obtained during the bone marrow stem cell collection last week! I am in awe. We were praying for at least 2-3 transplants worth. We definitely wanted enough for 2. Just to be safe. They aim for at least 2, but focus on enough for one if there is a struggle in collecting. We are so blessed by this news. It puts a lot of our concerns at rest.

 

These stem cells will be used during the 6th round of chemotherapy that Sammy will be receiving. This last round of chemo is not apart of the Head Start III protocol that he is doing. It is an additional treatment. This last round is used as basically an atomic bomb on his body, and is used to kill off all cells in his body. Just in case some of the cancer cells were able to evade the standard chemotherapy protocol. As I wrote in our last treatment update, medulloblastoma is a smart cancer. It adapts quickly and evades treatment. This last chemo round is a last ditch effort to get it all. In doing so, it will kill all healthy cells. They will then use these stem cells as a rescue to help him recover from such a lethal round of chemo. However, once this all happens and he is given back his own stem cells. His bone marrow will forever be considered damaged. As it is a restart, replacement, regrowth based off of collected cells and none that are left in his body. They will not want to risk redrawing for any future use.

By his collection exceeding expectation, it means he will have spare cells available for the "what if" down the line. One of the things that is hard with his diagnosis is that there is a high chance of a re-occurrence at some point, alone with a high chance of him getting leukemia down the line. The drugs used to help beat this cancer, have a link to causing this later in his life. Again by having extra it means that he might never need to find a match for a bone marrow donor at any point in his life. This is a simple blessing that could be huge depending on where his journey takes him.

In the last few days, we have begun to evaluate some other steps in Sammy's adventure. One of which was the possibility of him being released this week until the start of the 3rd round of  his treatment. This put me in a tailspin, as there was a ton to figure out in being able to take Sammy home and being able to properly care for him.

After much discussion, everyone seems to be on the same page. That staying in hospital is for the best interest of Sammy. As much as we would love for him to come "home," There are a lot of complications and downsides to bringing him "home." Some of the complications are a wheelchair, a proper one for Sammy to use while he is discharged. Another is a hospital bed and making space for it in a hotel style room. Also a car seat for transporting him, along with a vehicle to handle both transporting him and said wheelchair. We also have the issue of access to therapies for Sammy's continued progress with recovering from PFS (posterior fossa syndrome). As we asked each of these to be addressed. Some came with answers, some opened the door for more questions. Ultimately, the lack of access for therapy during discharge is what is keeping us from wanting to leave. We are told he will not be able to get therapy as an out patient.

Why would we give up his therapies on the days when he feels his best? Why would we not want to push him when he is feeling his best? Why would we give up the progress he is making when we know we can push him harder and more because less limitations in place? Our big focus is on feeding therapy, something we can not do on our own. Why give that up when he is not feeling awful and nauseated? It makes no sense to me. So for now we are fairly certain that we will keep Sammy inpatient instead of releasing him for the next week. We will see what next round brings and if we are able to get something better in place for his therapies, so he may be able to have a week out of the hospital.

Our other concern is keeping him healthy, which would be hard if he is in contact with Logan who is in contact with all the germs at daycare. We would be at Ronald McDonald House during his discharge and all sleeping in the hotel style room. Sammy would be put at a huge risk of getting sick before the start of the next round of chemo. This is something we also need to discuss in the possibility of him being discharged. We would be still greatly limited by what and where we could go for him time out of the hospital. In part because of his mobility limitations, but also because of exposure limitations. We definitely still have quite a bit to hash out before feeling that discharge is in the best interest of Sammy. So for now we chug forward as we have for the last couple of months.

The other piece we discussed about Sammy's journey is the addition of inpatient therapy following his chemotherapy treatments. Sammy will likely do 1-3 months of intensive inpatient therapy following the conclusion of chemotherapy. So we would likely continue to live at Phoenix Children's through the summer. With the possibility of him getting discharged before the start of the new school year. So looking at July to September for his possible discharge. Ultimately it is looking more and more like we will be planning to live here for a year total. If allowing for delays and other mishaps along the way. We certainly have a lot to really consider and plan for as we talk about our 2017.

As for Sammy, he has been making lots of baby steps in his recovery. He has been doing some swallowing during feeding therapy, along with starting to make some purposeful sounds. Today he made and AHH sound. He is also starting to be able to navigate using an communication app on an iPad. It is basically an interactive picture communication board. But this means his motor function is improving enough to point and tap on the iPad. He is doing much better at grabbing and pointing. He is able to hold a weighted spoon and self feed with lots of effort. But he can do it. Little baby steps. He is also starting to be able to sit up with limited support for short amounts of time. He is continuing to shock and awe everyone with his progress.

Today his therapist made a comment about blowing past the goals she has for him. I just laughed. It reminded me of how he was always one step ahead with his goals when doing ABA therapy before all this happened. His ABA therapist were always having to modify and add new goals because he was just blowing through them so quickly. Definitely a problem we are grateful to have!

So for now things just keep progressing forward. Next week Sammy will start the 3rd round of chemotherapy. Just taking one day at a time, one moment at a time.


PRAY for our family. PRAY for Sammy as he has a few days to rest in-between rounds of chemotherapy. PRAY for continued healing of his body and for continued recovery. PRAY for Logan as he is still adjusting to this new normal. PRAY for Charles and I. PRAY for our marriage. PRAY that we draw closer to each other through the difficult months ahead. PRAY that we are able to give each other grace. PRAY that we are able to be the best support possible for each other and for our children in these many months ahead. PRAISE that Sammy is making improvements daily. PRAISE that his stem cell collection went without problems. PRAISE they were able to do such an awesome collection and that his body responded well to the process. PRAISE that we are one more cycle down.