Tuesday, January 31, 2017

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. 

Wednesday, January 11, 2017

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. 

Thursday, January 5, 2017


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. 

Wednesday, January 4, 2017

1.4.17 :: Treatment Update


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.