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!