12.31.16 :: Year past and year ahead

I am not quite sure where time has gone this year. Despite being one of the most difficult years of my life, it has flown by in a blink. This will be a year I want to erase from my memory, but a year that will define the years to come. So the memories have to stay. 

The front end of the year was spent preparing for Charles to leave for the Air Force. Prepping our kids and myself for him being gone and me taking on the role of a single parent. Preparing our kids for the many months of their daddy being gone. We did books, countdowns, special daddy bears and daddy blankets. We did videos of daddy reading stories and of him doing the night time routine. It was a whirlwind to prepare for this huge change. I went into April already exhausted, and my tough months had only just started.

In April, Charles left. I became a single mom. We celebrated Logan turning one with Charles gone. I became overwhelmed with all that our lives require as just one person trying to fill the gaps of two. I spent sleepless nights writing letters to Charles and cleaning our home. And woke every morning to do it all alone again. I drove to Texas and back 3 times, 4 of the legs I drove solo with both kids. Logging a total of approximately 90 hours on the road driving. And every trip included vomiting and sickness. I managed to come into September a bit worn and exhausted, but ready for a much needed break. Charles was finishing the last bit of his Air Force training in Tuscon, just 2 hours away. And I was ready for some much needed relief.

As we entered October, we were making our plans to do our first vacation, or even over night together with no kids. A Hawaiian cruise. I was counting the days until he graduated from all his military training and we could take off. On a no-stress vacation.

Then our lives forever changed on October 19th. Sammy was diagnosed with brain cancer. Our sweet child has cancer. CANCER?! How is this even real life? How is this happening to our family? We have finished out our 2016 with moving to Phoenix Children's Hospital/Ronald McDonald House. Sammy has logged 75 continuous nights at the hospital recovering from brain surgery and receiving chemo treatments. Our 2016 has ended in a way I could have never dreamed. Our child fighting for his life in a hospital room.

As we enter 2017, I am terrified. I am terrified of what the next 365 days will bring to our family. I realize that we may face some of the greatest moments our lives could have to offer or we could face some of the most devastating. All I know is that 2017 will be one of the most difficult years I will ever have to face as a parent, no matter what those days contain. Whether it be sorrow or joy. We have a long year ahead, watching our son face cancer and overcome posterior fossa syndrome. We have a long road ahead as a family in overcoming some of the hardest moments in a person's life.

As I look forward to 2017, I beg for this year to be merciful. I beg for it to hold joy. I beg for it to be filled with hope, joy and faith. As I journey through this year, the one thing I do know is that God will be carrying me every moment of every day. Because without faith and hope, I would never get from one day onto the next. Without looking for the joy in every moment, I will never get through all the moments of despair in between. I pray that this year holds a moment where we can shout Sammy is cancer free. I hope this year holds moments of him walking again and running after his little brother. I pray this year has him finding his voice again, and getting to hear the sweet words of "I love you too, mommy." I pray this year gives us moments of him going to school again with his friends and teachers. And him getting his next belt in karate. But my biggest hope is that we get to end 2017 as a healthy family, that we get to keep our Sammy. No matter what the details in-between may hold. That is my greatest hope for 2017.

As you each enter 2017, I challenge you to PRAY for our family everyday. PRAY for Sammy, Logan, Charles and myself. As we enter probably one of the longest, most trying years of our lives.

Blessings

Over the last month God has pulled on my heart to give. Give in a time, when I fret about how we will cover our expenses in the long term. How we will make our ends meet over the next year or more as we travel this adventure with Sammy. But each time I have listened. And each time we have been abundantly blessed back.

The week before Christmas, a fellow mommy in a group I am in on facebook was hit with a significant hardship. Many of the fellow mommies gathered together to raise some funds for her to cover this unexpected hardship. When it came time to forward the money, it was not realized it would take some time for the money to actually transfer. As soon as I saw this, I stepped in. I covered the raised funds and filled the gap to meet the goal. I got a money order and I overnighted the funds to her. I actually offered and spoke up without even thinking. I just felt the tug and was responding before I even knew what I was doing. I just knew it was what God was calling me to do.

The next day I got a call while I was out from my mom, saying that I needed to get back to the hospital. We had a surprise and we were needed. When Charles, Logan and I arrived in the hospital lobby we were greeted by a group there to see us. We were presented with a money tree, filled with donations for our family. Enough to cover 2 months of daycare expenses for Logan. It was truly a speechless moment for me. Another friend of ours had planted the seed about blessing our family, and this was the outcome. All I could think was how God had provided for our family. That he honored our willingness to give, despite being in our own difficult season.

God is certainly good. I know he will see us through Sammy's adventure and will continue to provide in every way needed, one way or another. I just have to have faith, hope and trust that he will see us through this stormy season of our lives.

12.13.16 :: Treatment Update Preparing for round 2

Sammy's adventure is rarely calm. We keep him pretty busy during each moment of this journey. It seems like everyday there is something new happening, but that is not necessarily a bad thing. Sammy is making amazing progress in recovery from the effects of posterior fossa syndrome. Over the weekend we got him to give us a thumbs up and he also signed "more" to us. We have seen a significant improvement in his purposeful movements in both his arms and legs. He helps now in getting dressed by pushing his arms and legs into the openings. He is grabbing and holding a lot better. His movements are slow, and can see they take a lot of concentration, but he is doing amazing. Slow, but steady progress. He is working hard with the therapists, and with Charles and I on our own.

Yesterday, Sammy had a kidney function test in the early morning. Followed by a BAER hearing test in the later morning. Both of these are used as base lines to see where he stands before each round, and if any changes have occurred from round to round of chemo. Everything looked great on the kidney function test. No concerns. The same was true of the hearing test. There has been no change in his hearing since his last one. Which is great news. The reason for these two specifically is that the chemo drugs he is on can cause hearing loss and can cause diminished kidney functions. We are very happy that there are no signs of either at this time.

As of right now, it is looking like Sammy will be starting his next round of chemotherapy tomorrow. This may change, if he has another really bad day starting in the morning. Today was rough. It started out great, but quickly deteriorated. He became agitated, and appeared in a lot of pain. We believe he was having head pain, most likely a migraine type headache. None of the medications he was given throughout the afternoon even slightly touched the discomfort he was feeling. It made for a very long, hard day for everyone involved. He eventually fell asleep, just passing out from pure exhaustion around 1900MST. The oncologist came by in the afternoon, and said they may push off starting his next round of chemotherapy if he is still having a really rough go. They are hoping to get him a better pain management and nausea management in place to help with the discomfort he is feeling. We are praying for a better night tonight. Praying that he sleeps easy and soundly. That he wakes feeling refreshed. If he is doing better tomorrow, they will proceed as scheduled. If he is having a tough day, they will postpone the start of this new round, until they feel he is in a good place to start it. 

PRAISE Sammy finally fell asleep. PRAY he continues to rest all night and has an easy night. PRAY that he wakes feeling better and ready to take on the first day of his second round of chemo. PRAY that both Charles and I get a good nights rest and feel refreshed going into tomorrow. PRAY for me to have the patience to tackle another hard day ahead and be able to be the rock that Sammy needs me to be in his journey. PRAY for the side affects of the chemo to be minimal. PRAY for that the nausea subsides and he is not uncomfortable with his feeds. PRAY for his treatment to function the way it is necessary to clear his body of every cancer cell.

12.6.16

The past week has been full of many ups and downs for Sammy. We hit a pretty hard time in his chemotherapy treatment where he began vomiting regularly. He also has ended up with pneumonia in his left lung. He had fevers for several days in a row and had numerous other tests done to find out what was wrong and how severe. It was quite a hard week watching Sammy struggle. He actually added 3 more times of being put under, and one more general surgery procedure to his list. It seemed like everyday was going to be something new to figure out what they can do for him. It was hard to watch him so uncomfortable and so unhappy with how he was feeling.

He is thankfully feeling a bit better in some ways. Still not great in other ways. He is still having a ton of coughing from the pneumonia, which is expected and wanted. His sinuses are still doing a ton of draining, which is adding to his overall discomfort I am sure. They will be doing more scans to track his lungs healing from the pneumonia over the next several weeks. We are not sure how this will impact starting his next round of chemotherapy at this time. As the next round is due to begin around the 14th of December.

Over the last week, we have seen a lot of answers to prayer as well. Lots of little blessings in Sammy's recovery. He has gained a bit of control of his hands/arms. He will now wave and give high fives with lots of added encouragement and praise. But he is doing it and make a huge effort. He is also starting to point, reach and touch. This is huge in helping him to communicate with us, as we can use items or pictures to help give him back control in telling us his wants. So holding up a choice of 2 dvds or showing a picture of his chair, and asking him to touch it if he wants to sit in it. It is slowly giving him back some control of his life. Which is absolutely amazing. He is also becoming more verbal, by making babbling sounds. They may not be words, yet but just like with an infant this is the start. So exactly what we want to see him doing.

Also in the last couple of days, we have seen him being more active in his movements. He has made several attempts on his own to sit up. His head control is doing so much better and he is rolling himself around in the bed. I even caught him today in a moment of agitation on his hands and knees. I have no idea how he got himself into that position, but amazing to see. Hopefully this is all baby steps in his recovery to regaining his abilities affected by the Posterior Fossa Syndrome. We are so proud of Super Sammy in everything he is doing and how far he has come.

The biggest answer to prayer happened yesterday, Monday. His catheter fell out while attempting to give him a shower. Instead of just placing it immediately, they wanted to give the opportunity for him to pee on his own. He did!! He peed on his own, and it was a full release leaving his bladder empty. He has continued to pee on his own over the last 24 hours, which means he does not need a catheter as long as he continues to pee regularly. We are hoping that this will continue and he will be able to have one less line attached to him at all times.

It has definitely been a big week for Sammy, but he continues to show us his strength and courage. We have been having some issues at night with him. We are not entirely sure what is making him or causing him to be so upset. But the last 2 nights he was up most of the night in panics. Please keep him in your prayers.

PRAISE that Sammy is going pee on his own and no longer requires a catheter. PRAISE that he is gaining motor functions and is beginning to make purposeful movements with his arms and hands. PRAISE that we have been able to get his nausea and vomiting under control. PRAISE that Sammy had some added joy this week with a couple of extra special visitors. One being Officer Damon Cole (Superman) who visited Sammy on his road trip across the country. PRAY for Officer Cole's journey and all he does to impact the lives of children like Sammy, and as he impacts the lives of those in the community where he patrols as a police officer. PRAY a blessing for this man as he has a huge heart. PRAY that Sammy's scan tomorrow shows improvement in his lung. PRAY it shows anything that needs to be seen that may be impacting his comfort level. PRAY for Sammy during the scan and is placed under anesthesia once again. PRAY that he feels safe and protected during the scan. PRAY that his body continues to recover from pneumonia. PRAY that he continues to make strides in his mobility and in his communication. PRAY for a restful night. PRAY that his body is healed from whatever trauma is causing him these episodes in his sleep. PRAY for us, that we too are both well rested as we tackle tomorrow. PRAY for continued healing in our son.

Polar Express

One family adventure, we are all very sad to miss out on this year is our visit to the North Pole on the Polar Express. This is an adventure we did last year with both boys and had planned on going up this week actually to take a ride again this year. Anyone that has spent time with Sammy, knows how much he loves trains. Last year's trip to the Polar Express train was a magical experience for Sammy. He loved every minute of the adventure. And spent all year ringing his bell, so excited for Christmas to come around again. The experience is one to never forget. Just like in the book, they come punch your ticket, they server hot cocoa and cookies, we visited the North Pole and had Santa board the train to give each person a silver bell. A true magical Christmas experience.

After the train, you have the opportunity to get pictures with Santa on a train. Logan was completely wiped out from our adventure, so missed actually seeing Santa. But it made for a very magical moment that we were able to capture and keep forever.

It was such an enchanting experience, one we hope to do year after year with our kids. This year that is just not in the cards, along with many of our other Christmas traditions. But yesterday, Sammy got a huge Christmas blessing of his own. The Polar Express came to him. While no train and no cookies. He did have the magical adventure of the Polar Express read to him, just like they did on the train for us last year. And he was given his first Christmas gift, Santa's sleigh bell. Definitely a very special surprise. And still very a very magical one at that!

We might not get to do all our traditions this Christmas, but both our boys will certainly be blessed by the spirit of Christmas. Hopefully, next Christmas we will be able to take the train to the North Pole once again. 

12.2.16 :: Treatment Update Bone Marrow Transplant

Yesterday, we met with the Bone Marrow Transplant (BMT) team to discuss the transplant that Sammy will have during the course of his treatment. This conversation gave us a ton more information to process, but also answered a couple of our big question in terms of Sammy's treatment.

At the end of the next round of chemo (his second round) the BMT team will be harvesting stem-cells from Sammy. His transplant will be using his own bone marrow cells, so they need to harvest them early in his treatment process. So to harvest his cells, they will be tracking his levels closely, and when they are ready they will be placing a new IV in him, one that has thicker walls to handle the process of the draw. They then will draw out his blood into a machine that will separate out the cells they need and return the rest of his blood back into his body. So it is a non-invasive bone marrow harvest. Huge sigh of relief. And that is it, it will take at least a day of draws, but no more than five days to harvest the cells they require. Then he will continue on with his chemo round and start the 3rd round of chemo. 

Sammy will then continue to receive his next few rounds of chemo, totaling 5 rounds of the Head Start III protocol. Following his 5th round of chemo, he will has his care transferred to the BMT team. They will administer a 6th round of chemo. This round of chemo will be highly toxic to his body. Basically a lethal dose of chemo, if they did not have a way to rescue him and help him recover. The rescue is his stem cells that they previously harvested. The chemo will kill his bone marrow, so they will give him his cells back, along with giving him shots daily that will encourage cell growth, so that he can recover from this extreme dose of chemo. 

We are told expect this last round of chemo with the transplant to take 6-8 weeks. So this adds some time and extends Sammy stay in the hospital. At best case scenario, Sammy's treatment without any interruptions will take 7 months, so another 6 months from now. Putting us at June in best case. We were told when we started this journey to plan 1 year of being in and out of the hospital. Mentally I am preparing to be here till August, but know that can be extended.

Obviously, this meeting left us with a lot of information to process. Along with a very heavy reality of what Sammy will be going through in the months ahead. There is not one easy thing about it. But we are all just taking it one day, one moment at a time.

PRAY for our family as we process this information and prepare for the first part of this process in the coming month. PRAY for our family as the reality forward that we will be in hospital for 2 months longer than we initially expected. PRAY for Sammy as he continues in this battle. PRAY that they are able to get the cells needed, plus some (ideally enough for 3 transfers). PRAY for a spirit of calm and peace to surround him daily. PRAY for him as he processes all this new. PRAY for our family, and for our Sammy. 

Superman!

Today we had the honor of meeting Superman. And Superman had the honor of meeting Super Sammy! It was pretty fantastic. Okay, it was actually Officer Cole who runs Heroes & Cops for Childhood Cancer. We were very honored for him to take the time and schedule a stop to visit Sammy along his cross country road trip. This humble man spends his time off from his full-time job, as a police officer, visiting heroes like our Sammy. Just to brighten their day, give them smiles and help raise awareness about childhood cancer, all on his own dime. He stands firm that kids like Sammy are the real heroes, and I agree. But people like him are a rare breed and he is certainly a hero in our eyes. We were so blessed by his visit, even though Sammy was having a rough and sleepy day. He was not very responsive during the visit, but he was aware of it. Later on in the day, I told him about the visit, and Sammy lit up as soon as I mentioned our special visitor earlier in the day. So he was very aware of Superman being here, and was very excited about it. He was grinning ear to ear as I recapped our day with our special hero visit. So thank you, Superman, for taking a moment of your day to spend with our family and honor our little hero. We hope to see you again when Super Sammy is feeling much better!

11.7.16

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.

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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.

11.6.16

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.

11.1.16

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.

10.30.16

We definitely had some highs and lows over the last few days. Definitely a bit overwhelming for all of us. Over the last couple days we have seen Sammy gained a ton of motor functions in his limbs. His left arm he is moving all over the place without any stimulation, which was the limb that was having the least response in up until this point. Over the course of the day his movements became even more pronounced. He also rolled from side to side last night in his sleep, which is huge as well. We are not seeing many intentional purposeful movements, but any movement is great right now.

On Friday they tried to place a PICC line, which is a longer term central line for. However, that was failed. It made for quiet the emotional day. They attempted to place in both legs, but the line did not go where it was supposed to go, and ultimately they pulled it out later that evening. They may or may not attempt to place another PICC line. They also attempted to pull the foley catheter, but ended up having to place it back again after Sammy was unable to urinate on his own. Another stressor for the day.  The therapists all came for visits as well. We worked on oral stimulation during feeding therapy. They worked on sitting up and tracking with his eyes during OT/PT. They also did an ECHO test on him to ensure not issues with his heart, as his heart rate has been soaring upwards. Everything came back clear.  Friday was definitely a tough day.

Over the weekend we had a very rough couple of days. Sammy’s drain was leaking at the back of his head again, which means we had to lower the tube pressure down again. Again the drain is what is keeping us in the PICU for the most part. The drain must get removed for us to move to a different floor. Because it was leaking and taking the path of least resistance, not going though the tube, they had to put another stitch in place. So far there has been no leaking since, thankfully. They will slowly begin to raise the drain again (pressure in the drain) and attempt to get to a place where the drain can be removed. Or Sammy will have to have a shunt placed.

They did a few more tests over the weekend for him as well. They did an MRI which came back with no concerns. Everything looks as it does for being a little over a week post-op. They also did x-ray of his abdomen to make sure there were no more signs of trouble with his liver. Everything is coming back clear. Which is great.

He was experiencing a lot of pain/frustration over the weekend. It was really hard on us all. His heartrate was skyrocketing up in the 200bpm. I ended up asking to pick him up and just hold him, which helped calm him down quiet a bit. I ended up laying in the hospital bed with him for most of Sunday just to keep him calm. He did finally sleep well Sunday night. Hopefully we will have better days ahead.

PRAY for his continued healing. PRAY that they are able to wean him off the drain, so as to eliminate the need for him to have a shunt placed. PRAY for him to have peace and calm as he continues to become more aware of his situation. PRAY for all those that come in contact with Sammy. PRAY for us all as we face some tough decision ahead as we learn more about Sammy’s diagnosis. PRAY for continued calm and peace.

10.27.16

Another day of small improvements for Sammy and definitely a busy day. He had visits from OT, PT and speech/feeding therapist today. The feeding therapist did some apple juice today, but is concerned about his swallowing. She will continue to come back, but will be more focused on oral stimulation instead of working on getting him to swallow. As he is coughing and worried about agitating him with all the extra coughing. PT and OT came in together. They were working on getting him to track with his eyes more. He is not focusing well and his eyes are pretty much always crossed currently. They worked with some bells and used a few other objects to grab his attention to follow with his eyes. They also brought us a chair for Sammy to sit in as one of his positions through out the day. They would like him up more, but he slouches down and this chair will help keep him in a good position. They sat him at the edge of the bed again as well. So working towards getting him out of bed and moving around some. Still limited because of the vent draining fluid from his brain.

Neurology seems pleased with how he is doing. They will be keeping him on an anti-seizure medication for a while just as a precautionary since he was showing some minor seizure behavior. They will want a follow-up MRI as well just to make sure the brain swelling has decreased the way it is supposed to and that there is nothing else causing the limited function in his limbs, which is mostly in his left arm currently. His other limbs are doing better. He is moving around both legs a ton, but his arms are not moving around much, if at all.

Sammy still has an elevated pulse and they are not totally sure what is causing it, but can be a number of things. He did not have any more fevers today, thankfully. But is still on medications for a possible infection until they get the results back from the draws they did yesterday. He also had an ultrasound today of his liver. It is showing larger than normal, but no news about what they will be doing for that, if anything at all. The other thing done today was they moved his feeding tube from being an ND to a NG. So before it was going past the stomach, now they pulled it back into his stomach.

We still have not had a visit from oncology yet about the pathology results, so hoping for a visit tomorrow. However, the results did come back yesterday. But we will not know the full extent or a treatment plan until we see the oncologist that will be handling Sammy’s case. The tumor came back as Medulloblastoma. It is the best outcome of the possibilities that were presented to us. This is good news for him. It is a rare brain tumor, but is more common than the other alternatives. Medulloblastoma from our googling makes up about 2% of all brain tumors, and about 15% of pediatric brain tumors. The recovery rate can be good depending on the risk and stage diagnosed, which we do not have currently. We most likely will not have that information until after he has a spinal tap done sometime next week. That will help determine if the cancer cells have spread. So for now we have a name, a preliminary diagnosis. It is no longer a ghost, but something concrete. Medulloblastoma. And I would be lying if I said I was not terrified of the road ahead. All we can do is trust. We have no idea where this road will take us or what his future holds, all we can do is trust that there is a greater plan. One we know nothing about. For now , we have been prepared for the likelihood of both radiation and chemotherapy treatments.  To expect at least year. But nothing is really known. As we know more, we will share more. So for now we continue to wait, with our main focus still being Sammy’s recovery from his brain surgery. We can do nothing about the next step until he is recovered from this first step.

PRAY for continued healing and improvements as Sammy’s brain and body recovers from surgery. PRAY he does not feel anxious about all the new things around him and all the things ahead. At this point we have no clue what he is processing or how much he is really grasping of any of this. PRAY that he continues to take baby steps in his recovery, especially in regaining his speech and mobility in all his limbs. PRAY that the cancer has not spread and that his risk is low. PRAY our Sammy continues to shine through the fog, little by little. PRAY for little brother, Logan, as he continues to fight his this virus, so that we can spend time as a family again. PRAY for our hearts to stay calm and be lead to the land of “what ifs”, especially as we await answers and our questions grow with the news of his preliminary diagnosis. PRAY we are able to surround Sammy with a spirit of calm and peace. PRAY Sammy always feels he is safe and loved, never scared, afraid or anxious. PRAY for all the staff that are surrounding Sammy regularly and that they have clear thought in the treatment of Sammy and nothing is overlooked. We have been blessed with a wonderful staff that seems to deeply care for Sammy as a patient. PRAY for rest, for all of us. That we each feel refreshed and rested at the start of each new day.

10.26.16

Just another day in our hurry up and wait cycle we are currently in. He had a good day overall, not too much change in his condition. It was definitely a busy day for our little man. We had visits from Speech/Feeding and PT. He got to do some licks from a lollipop today and seem enjoy it. Still having some trouble swallowing. The physical therapist was able to move Sammy to sit up and him at the edge of the bed for a little bit. Which really seemed to do well with and enjoyed. His levels seemed to do better with the change of position. They are hoping to get him out of bed in the coming days, which would be wonderful.

Sammy did spike a fever during the day, which is a bit of a concern for possible infection. They drew fluid off the brain vent, urine and blood to send for testing to make sure not infection. So we have to wait 48 hours for the results from that. In the meantime they are giving him some extra medications to help with the risk of infection.

He did have some issues with the pressure in his brain and with the vent. He was having some leaking from the vent site, so the neurosurgeon had to add a stitch to help give a better seal. They also lowered the pressure level to help with the leaking. They are hoping to raise it back up over the next few days and eventually wean him off the vent. For Sammy to be moved out of the PICU he has to have the vent removed. So that is what we are working towards.

PRAY for continued healing for Sammy. PRAY that as he becomes more aware we are able to keep him calm and help him understand all that is going on around him. PRAY we are able to keep our focus straight and not get caught in the land of “what ifs”. PRAY that Logan continues to heal and get healthy, so he can spend time visiting with Sammy as well. PRAY for a continued spirit of calm and peace during his recovery.

10.25.16

Sammy was much more alert today, awake more of the day and seems to be more aware. He kept the EEG on all day and overnight again to continue to monitor for seizure behavior. It appears that he has had a couple of minor seizures that have lasted a few seconds. So they are keeping him on some seizure medication. Sammy had another MRI today, it was a shorter one that gives more general look than a really detailed look. They found that the brain is retaining fluid and there is a small build up. We have not learned what they will be doing for that situation just yet. They tried change the level of drainage from his brain to increase the pressure, but he could not handle the extra pressure, so they changed it back down. Sammy has been having some increased heart rate activity, so they are trying to find the source for the spiking and higher resting level.

We also had visits from PT, OT and Speech/feeding during the day. Feeding therapy went well. He had his first ever taste of soda, Sprite. He seemed to like it and worked well with trying to swallow it. She is also working on him with ice chips to get him swallowing. OT and PT will be doing more in the coming days as they remove the EEG from him and he is able to leave the bed. PT came back a second time yesterday and got approval to sit him up as long as stayed in view of the EEG camera. So Sammy got to sit up, supported, in bed for a little bit yesterday. He seemed to respond really well to the change in positioning.

We did also see Sammy make some intentional responses, such as a slight head movement for “no”. All baby steps, but going in the right direction. He has had decreased movements/responses from most limbs. His most active limb is his left leg. And his left arm is the least active/responsive. They believe what we are seeing is called Mutism. Which can occur in about 25% of surgeries like Sammy’s. We would see a decrease in speech, and also in motor response. They really do not know much about it, other than it is a rarely permanent. But his responses are likely falling into this category.

We still do not have any results back from pathology, we are hoping to hear Wednesday or Thursday. This will give us a better look at what our adventure might be for the long term. But for now our focus stays on the here and now. Helping Sammy recover enough to move out of the ICU and back onto the floor above.

PRAY that Sammy continues to improve in his recovery. PRAY for any anxiety he may be feeling as he becomes more aware of his surroundings and situation. PRAY his body is able to continue to rest and heal. PRAY for each of the staff that come in contact with him, that they have clarity and peace for their treatments and therapies. PRAY for us as we all grown more anxious about a diagnosis and hearing back from pathology. PRAY we are able to keep a spirit of calm and peace as we surround Sammy. PRAY that he feels God’s hand of healing and protection. PRAY for Logan to recovery quickly from the virus he has, and that all those who come in contact with him stay healthy.

10.24.16

Today was a rough day. It was not bad. Just hard. Sammy has spent most of the day in pain, especially as he becomes more awake. His condition is mostly unchanged. We tried to see about starting him on oral feedings, but he is not responding to swallowing properly. We will try again tomorrow with the feeding therapist. So for the time being he has a nasal feeding tube. We are hoping that him getting some nutrition will help him get stronger and make some more strides in his recovery. They are concerned about seizures still so they have upped the seizure medication and are keeping him hooked with an EGG for the night to monitor him. They are not really sure why he is having seizures, but definitely not uncommon. Just not a normal for where the surgery for him occurred. We are waiting to hear from oncology about the pathology results to determine his actual diagnosis. They might come back tomorrow, but by end of week if not. So just lots of waiting for now. Lots of praying and supporting our little guy any way we can. We are reading to him lots, as that is one of the only things we can really do with him right now. Hoping tomorrow is a better day for us all and that he makes some more strides forward.

Pray for his healing, that is is made whole again. Pray for his pain, that he can tolerate it with ease. Pray that he can urinate on his own, as he has had difficulty since the catheter was removed. Pray that the seizures are regulated and that they are not impacting his functioning. Pray he continued to gain back functions, that me is able to make more movements of purpose. Pray that we get to see our Sammy again, and not just a shell of who he was. We want to see him shine again and shine bright. Pray he is surrounded by comfort. Pray for us as we navigate this road unknown and that we can continue to keep a calm and peace around us.

10.23.16

This morning was amazing. We got a little peek at OUR Sammy again. He seemed to be with it a bit more and started to make some voluntary movements. Lifting up his arms and moving his legs, sticking out his tongue, and even lifting his bottom off the bed. He was pretty out of it still today. Most of the movements were in his sleep, as he spent most of the day asleep. But rest is one of the things he needs to fully heal. He thankfully has not had any more seizures. So very stable today, with minimal issues. Tomorrow they are going to talk nutrition, since he has not had food since Wednesday afternoon in all truth. As he slept during his ONLY time he was allowed to eat since arriving, which was on Thursday evening. Still our main focus is just on his recovery from the surgery and getting all his functions back.

PRAY that Sammy has an awesome night sleep and wakes up ready to wow us all. PRAY he continues to make steps forward in his recovery, so he can get out of the PICU. PRAY that we continue to be able to balance being parents to both our children and give them each the time they each need and deserve. PRAY we all stay healthy as the stress of the last 5 days weight on each of us. PRAY for the staff supporting our family and that they have a clear direction to go with our son with his care and treatment. PRAY for our continued calm and peace. PRAY we all stay focused on the here and now, and do not allow our minds to wonder into the months ahead and land of “what ifs”. PRAY all those who surround Sammy are able to encourage his healing in the best ways possible.

10.22.16

Today was mainly about just Sammy recovering from his surgery. It was a bit stressful as he never really became fully responsive today and is still quite out of it. He did take a few seizures today on top of everything else, so they started him on an anti-seizure medication. He took a much longer one tonight and gave him a bit of a different one to end it. It was not a bad one just twitching for almost 5 minutes.

We did receive great news following his MRI today. The neurosurgeon was very happy with what he saw and could not be happier with the scan. There is one possible area where tumor is left, but does not appear that the spinal cord is impacted. They will do another one in a couple weeks to continue to monitor the progress.

The new few days are going to be all about recovery and getting released from the PICU (Pediatric Intensive Care Unit). They really want to see him come out of his fog and also want the drainage from his brain to be stabilized.

We now have some more back up. Charles’ parents also arrived tonight. Which will be nice to have in addition to my mom being here as well. We got to spend some time with Logan tonight and he is staying with the grandparents tonight. It was nice to have our family whole tonight.

PRAYERS : Pray for continued stability for Sammy. Pray that the seizures are controlled and that he does not take anymore. Pray that Sammy begins to become more aware and starts talking and continues to show improvement. Pray for his healing and swelling to go down. Pray we are able to manage being there for both our children during this time. Pray Logan feels our love despite the focus on Sam right now. Pray for our continued peace and calm.

10.21.16 :: Surgery Updates

UPDATE 10/22/2016 @ 0630 : Sammy has been weaned from oxygen. He is responsive to a degree, but not fully awake. He has not talked yet either. We will be in PICU for the next few day, basically until they remove the tube draining fluid from the back of his head. We don't know much beyond that, but told to prepare for a month long stay at the hospital. Nothing will be done for the cancer until he has fully recovered from the surgery. Right now our focus will be on day to day recovery from his surgery. PRAY that his MRI goes well today and that they see what they want to see. PRAY Sam grows to be more and more responsive with no residual problems from possible damage during the surgery. We were told a laundry list of things that could be umpacted, from speech to motor functions. PRAY for his continued stability. PRAY for us as we transition Logan back into our home and care and that we can balance support for him during this long road ahead. PRAY for Charles' parents as they travel here today. PRAY for continued peace and calm to surround our family and Sammy.

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UPDATE 10/21/2016 @ 2000 : We are with Sam. We got to come back about an hour ago. He is still out, but is now off sedative. So just waiting for now. The rest of night will be checks by PICU nurses every hour. For now we wait. PRAY for this new transition for Sammy as he copes with all these changes. PRAY for us as his parents that we know how to best support him as he takes in all that has happened. PRAY he has a good night sleep and is able to remain in a peaceful, calm state. PRAY that over the next 24 hour we see all his functions return to normal, with no lasting nerve damage. There is a high risk of regression in multiple areas. PRAY for us all to sleep easy and get refreshed after a very draining 48+ hours. PRAY for Logan (our 18 month old) as we hopefully will begin to transition care of him. We are so thankful for our friend who has been able to keep him as apart of their family for these last 48 hours and into tomorrow.

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UPDATE 10/21/2016 @ 1735 : Out of surgery. We have not seen him yet. We spoke with neurosurgeon and anesthesiologist. Surgery went as great as we could hope for. He did loose significant blood and needed a transfusion. They were not able remove it all, but feel that future treatments will address anything left. There is no definitive diagnosis yet, and we will hopefully know more by Tuesday. We are waiting for okay to see him. He will spend a couple days at least in the PICU. PRAY for healing. Pray for a spirit of calm as Sam becomes more aware of all that has happened. PRAY that no issues arise during this immediate recovery period. PRAY we all are able to rest and continue to keep a spirit of calm and peace. PRAY the MRI in the coming day shows what they want to see. PRAY we are able to find direction for our next step.

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UPDATE 10/21/2016 @ 1545 : They are beginning to close Sammy up. He is still super stable. Expect another hour or so till surgery is complete. He will be in PICU for at least tonight. PRAY surgeons continue to stay focused and alert as they wrap up his surgery. PRAY they were able to remove everything needed for a healthy recovery. PRAY Sammy continues to stay stable. PRAY for our continued calm and peace.

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UPDATE 10/21/2016 @ 1435 : Sammy's doing great, super stable. Still working on removing tumor. PRAY for continued steadiness of those who touch Sam. For them to stay focused and energized. PRAY that they are able to minimize any damage to surround areas and the nerves in that area. PRAY for a clear diagnosis. PRAY for our own calm and peace. PRAY they are able to remove all the tumor necessary for healing.

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UPDATE 10/21/2016 @ 1230 : Surgery is going well. They are at the tumor and beginning removal. Sam is stable and has not required and blood at this point. PRAY for steady hands as removing the tumor. PRAY for minimal impact on nerves surrounding the tumor. PRAY that there is no issues with his spinal column. PRAY for a clear, swift diagnosis. PRAY for continued stability for Sam, for his vital organs to maintain stability.

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UPDATE 10/21/2016 @ 1135 : Surgery is under way. They are almost to the tumor site, and will then begin removal of the tumor. Sam is stable and doing great. PRAY for clear view of tumor and no complications in accessing tumor. PRAY for continued steady hands of all those who touch Sam. PRAY for minimal blood loss, as to avoid the need for a blood transfusion. PRAY for quick exchange with pathology in passing off sample of tumor. PRAY for clear diagnosis of the type of tumor. PRAY for continued calm spirits for ourselves and our family.

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UPDATE 10/21/2016 @ 1025 : First call. He is now in surgery. Nurse said he is doing great and pre-procedure went great. PRAY for Sammy's vital organs. He is on a breathing tube, which could cause heart failure. PRAY for these first incisions. They will be doing a craniotomy to access the tumor. Also doing small hole in back of head to reduce pressure and drain spinal fluid that has built up. PRAY for steady hands of all those touching Sam. PRAY for us to have a spirit of calm as we wait for our next update in about an hour.

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UPDATE 10/21/16 @ 0800 : We just left Sam as he is being rolled back. PRAY he takes well to the meds being given to keep him calm. PRAY for the anesthesiologist as the prep Sam to be put under and begin to hook him up to all the various lines. PRAY for the surgeons as the begin to prep him for surgery. Our next update will come once they start the surgery, which may be upwards of 2 hours from now.

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ORGINAL POST 10/20/2016 @ 1900 : As of right now Samuel will be going in for surgery at 0800 PST tomorrow. They are thinking it is a cancerous tumor. Just not sure what specifically it is. Between 2 types basically. The neurosurgeon has blocked out 12 hours for his surgery, but we don't know specifically how long it will be. And how they remove tumor may change based on what pathology determines the type to be.

Pray we all rest well tonight, especially for the surgically team.

I will try to update with specific prayer needs as we tackle the day tomorrow. Just have to trust God has a plan already there.

10.20.16 :: Initial Post

Please keep our family in your thoughts and prayers. Sammy was admitted to the hospital last night after discovering he has a mass on his brain during a CT scan. We unsure of what this all means. We will be learning more this morning after we talk to the specialist.

Update 10/20 - 0930 : Sammy has another scan at 1200, which he will be put under for. We will be meeting with specialists at some point this afternoon.

Update 10/20 - 1600 : The scan went well. He was a trooper. We talked to oncologist. She is preparing us for this to be cancer. Won't know until biopsied, but very likely the case. Sam will most likely be having surgery tomorrow. We hopefully will know the specifics of that later today. He will have at least a week of recovery in hospital, followed by several at home.