Monday, November 7, 2016


UPDATE 1800 : Sammy is out just recovering. Still out of it. Surgery went well. No complications.
PRAY for smooth recovery. PRAY for a peaceful and calm night for Sammy. PRAY for his healing. PRAY he is comforted. ------
UPDATE 1535 : Sammy just went down to surgery. They will NOT be doing the Lumbar Puncture today. That will be done soon with a couple other procedures.
PRAY that Sammy stays calm. That he feels protected and safe. That he has no anxiety going into this procedure. PRAY for the surgeons and the nurses that are surrounding Sammy. That they are calm, focused and have steady hands. PRAY for the anesthesiologist as he prepares Sammy for the surgery. PRAY for a spirit of calm and peace for us as we wait.
Sammy has another big day today. Please keep him in your prayers as he navigates through another long day. I will update as we progress through the day.
Earlier this morning he had another CT scan, which will be used for the surgery he is having later today. Thankfully he did really well and stayed calm, with the help of a low dose of morphine. The scan was quick and over in 3 verses of "5 little monkeys swinging from the tree". He is now back in the room resting for the rest of his big day ahead.
At approximately 1400 MST, Sammy will be going into surgery. Today he will be having several things done during the procedure, and it is expected to take about 2 hours.
1. Removal of the staples/stitches from his neck and head from the surgery 2 weeks ago.
2. Drain removal. Sammy has a drain in place that regulates the pressures of fluid in his head and around his brain. They are removing this drain and will be closing that area up.
3. Placing a Shunt. Since they are removing the drain they have to make sure Sammy can handle the pressure of fluid in his brain and that his body is absorbing it. Because they have been unsuccessful in weaning him off the drain they feel his body can not self regulate. They will need to place something that will regulate this for him. The shunt will do this for him. 4. Lumbar Puncture (spinal tap) to gather a sample of spinal fluid. This is the last piece needed in diagnosing Sammy and assessing his risk level with his medulloblastoma diagnosis. They are checking to see if any cancer cells are in his fluid.
PRAY that Sammy gets rest before heading into the procedure today. PRAY he keeps calm, no anxiety about the events of today. PRAY for clear minds and steady hands for all those that touch Sammy today. PRAY that Sammy is comforted and knows he is not alone during his procedure, that he feels safe and protected. PRAY for our worries and anxieties about the procedure today. PRAY that the right decisions are made. PRAY that if there is any chance he does not need a shunt, that it is known and he is spared from it. PRAY we keep a spirit of calm and peace throughout today.

Sunday, November 6, 2016


Sammy has had some really good days over the last several days. We are just working on getting a new normal in our lives. One that includes living out of the hospital for all of us. We got some answers, but now we have a million more questions.
Sammy will begin chemo at some point soon. They have not done the spinal tap yet, which plays into what chemo will specifically look like. We have a lot of questions about chemo treatments and what that will ultimately look like for Sammy and for our family. They are talking about doing the spinal tap procedure tomorrow, we will see what really happens. This is the biggie in getting his treatment moving forward. It will show if the cancer has spread or if it is localized to just that one area of his brain.
Sammy currently has a drain in his brain, that removes excess pressure from fluid in his brain. Our bodies are made to absorb this fluid. Because of the mass, his body was prevented from draining and removing this fluid properly. We were hopeful that his body would be able to do this, but this is not happening the way it should. When they try to wean him off the drain, he ends up leaking fluid out of his head at the site where the tube is at. Fluid will take path of least resistance and they want it to be through drain or absorbed by body. His is not doing that as they lessen the drain. They will likely be moving forward with placing a shunt to help keep fluids draining and pressures normal in Sammy’s brain. They will be doing this procedure when they do the spinal tap. The shunt may be a life long thing for Sammy or it could eventually no longer be needed. But for now it is looking like this will be needed for him.
He has had a bit of a difficult adventure with getting blood draws for tests they want to do on his blood. They pulled all his lines out except one over the last couple weeks. They had tried to place a PICC line, but as we previously shared that failed. In the meantime they have been trying to baby the IV in his hand. That finally failed. Sammy had a bit of a difficult morning on Saturday when that happened. The nurse was unable to get a new line in after a bit of a struggle. They called for back up and an IV team came and got it done in seconds. I am thankful it was super easy and they got it done. So Sammy has a new line in place, but they will be placing a broviac line when they do the other procedures. The broviac is a permanent central line that gives them access to the heart, basically. This line is what they need for the ongoing chemo treatments.
In addition to all that, Sammy has had difficulty with having his catheter removed and being able to pee. They removed it a few days ago again. They ended up trying to place it again in a failed attempt. After giving more time, Sammy did end up peeing on the nurse just as she was going to try and place one again. That was an answer to prayer. Sadly, he went another 12 hours without peeing and they deemed to need to place it once again. They failed once again in getting it placed. They had a special team come and get the job done. So they will be keeping it in place for the time being. During the procedures being done they will also have urology come and do a test on him to make sure there is nothing obstructing the way for pee to flow. They just want to rule out any issues, especially since placing one has seemed to be a huge challenge. We are thinking his inability to pee is one of the issues linked to his Posterior Fossa Syndrome. We will hopefully has some more answers in the coming days.
Sammy has been severely affected by Posterior Fossa Syndrome. He has made some baby steps in recovering, which is awesome. But we sense this will be a long journey. We have been able to attempt to get him to communicate using his eyes, by looking at pictures. It is difficult and see it frustrates him at times. He is completely non-verbal currently, and really does not make any purposeful movements with his limbs. Posterior Fossa Syndrome has very few answers moving forward and a whole lot of unknown. He is completely aware and understands when we talk to him, he just is trapped and can do nothing back. We just keep hoping for small steps forward in his recovery of this syndrome.
Sammy has been doing great in all of this. He has his moments, which are fully allowed and understandable. It breaks our hearts, as we can not really do anything for him, except reassure him that we are here and he is safe, that we love him and that we are all working on helping him get better. In the past several days we have been able to get him laughing and see him smile, and light up for various reasons. We hope to continue to be able to help him shine and smile during the rough road ahead.
As we proceed forward a lot of questions have to start being worked through. For myself I have been trying to stay focused in the here and now, but we also have to be ready for the journey ahead. You have to watch the road ahead to know where the bumps are coming. SO as much as I don't want to chase rabbits into their holes and get lost in the “what ifs”, we have to ask those questions to be prepared for the realities of our new life ahead.
In Sammy’s current state he has to have full care. He is immobile, on a feeding tube, has a catheter, and can not support his own body weight while sitting or standing. We have to be prepared for bringing him home in this state. I know that leaving the hospital is not in the near future, but it could happen sooner than we realize. We have to prepare for what that will look like and adjust as he hopefully continues to recover. I have no idea what that will even look like. The truth is we need to know what we have to be prepared for moving forward. As we want to bring him home. He wants to go home. Our life is just one big unknown right now.
PRAY for our worries. PRAY for us to keep calm and at peace with each new day and new adventure. PRAY we chase the paths that we need to know and not get trapped falling in rabbit holes as we prepare to move forward in this journey. PRAY for total healing of our son, Sammy. PRAY for every nurse, doctor, staff member that lays their hands on Sammy. PRAY for the plans we have laid ahead for his treatment. PRAY we can stay focused on the real stuff and not be distracted by the small stuff. PRAY for Charles and I. For our marriage. For our family. For our younger son, Logan. PRAY for wisdom as we decide Charles’ return to work and the logistics of finding care for Logan. PRAY we stay healthy and keep Sam healthy. PRAY for the doctors as they prepare to potentially do these other surgeries on Monday for Sammy.

Tuesday, November 1, 2016


These last two days have been great days for Sammy. He finally got some really good rest, as did we. Last night was the first really great night of sleep I think we all got since we got to the hospital on the 19th. Which was certainly needed. The last couple days have been a bit crazy, in good and in overwhelming ways.
Sunday night Charles left to go back to the Air Force Base he is currently assigned at to finish his last bit of training. It was a really hard decision, but we both felt it was the best of the options presented to us. He only had a few days left on his orders and figured that was better than a possible month of make up down the line at some point. So he went. Monday he let me know that he was finishing that day and would be home in the evening. Such an awesome blessing. We are so grateful that they were willing to make this happen, so he could come back to where he needed to really be without penalty of having to make up the time down the line. Whatever he has left in his training will be done during future Reserve weekends. They are granting him to return here till his orders are finished the end of this month. We are so grateful for this gift. So Charles got back to the hospital Monday night.
Today has been a very busy day. And I am so glad Charles was home to be apart of it all. Sammy got to stand up using a contraption that fully supported him in a standing position. He also got to leave the hospital room and go for a walk around our floor of the hospital. A nice change of view for him, plus he got to be in my arms and get mama cuddles. His Grammy actually got him to laugh. Which was the sweetest sound any of us could ever hear. It was so amazing to hear a little piece of my Sammy back.
Today we also met with the oncologist about Sammy’s case. His oncologist spoke with us for over an hour about Sammy, discussing his diagnosis and giving us an idea of their treatment plan for Sammy. Sammy is diagnosed with standard medulloblastoma. It is a rare form of childhood cancer, but it is the most common childhood brain cancer. As brain cancer is rare. We were told today that they felt they removed as much of the tumor as possible, but no way to say that they absolutely got everything. They will be doing a spinal tap later this week to make sure that the cancer cells have not spread. Right now he is placed at average risk, but if something is found his risk level will change to high. They would like to do the Head-Start III protocol with Sammy. Which is a chemo only treatment plan. His oncologist explained to us that he feels the risks to using radiation on a child like Sammy at his are not worth the benefits at this point in his journey. Radiation has a lot of risk associated with it. This does not mean that radiation is off the table, but that they will not be starting his treatment with radiation.
The Head-Start III protocol (from my current understanding) will be 5 rounds of chemo. Each round of chemo is a 28 day cycle. The first 3-4 days will be the chemo treatment, followed by 2-3 weeks of recovery, followed by whatever is left to go home before the next round begins. This will be an inpatient treatment, so we are told to expect to spend majority of the next 6 months living at the hospital. We will be learning more specifics over the next couple of weeks, but we got the basic overview today as a starter.
We have a lot to figure out for the days and months ahead. And will certainly be needing a lot of support. We have a lot of questions to and pieces to still figure out in the journey as we are only really beginning to get a glimpse of what this adventure has in store for us. But for now we have a place to start. A basic time line and a general idea of what is ahead of us. Now to start putting the puzzle back together and making the pieces fit.
PRAY for continued healing for Sammy as he recovers from his brain surgery. PRAY he continues to shine through despite all the challenges he currently is facing. PRAY we are able to clearly explain all that is happening with Sammy and that he is able to understand all that he needs to understand. PRAY for us as we fully begin to process his diagnosis and what that means for us all. PRAY we just will know if this is the right place for us to be for his treatment. PRAY we will be shown clearly if this is not the place we are supposed to be for our journey. PRAY for our spirits to be calm and peaceful. PRAY for healing of our hearts as we learned last night our family dog was killed over the weekend, and PRAY for our boys as we try to explain to them the loss of their furry brother. PRAY for each person  that plays a role along Sammy’s journey. PRAY we all have another restful, refreshing night of sleep.