Wednesday, April 25, 2018

April 25, 2018 : Reality

Reality. Every moment somehow manages to be harder than the last. The frozen moments of the last 18 months. Me learning to breathe again despite the absence of air. Being told my child has a brain tumor. Finding out it is cancer. Fighting through the horrible side effects, knowing my child may never be who he was before. Living in a hospital room for 8 months. Learning the cancer is back, a relapse. A terminal relapse. Never knowing how long my son has left, but knowing the answer is not long enough. Begging God to end the suffering of my child, either by miraculous healing or taking him home to heaven. Telling my child it is okay to die. It is okay to rest, to be free of pain, of suffering. Holding my child as his last breath left his body and heart gave it’s last beat. Knowing I will never feel his heartbeat again. Placing my lifeless child on a gurney, and having to let go. Leaving to go home with an empty car seat, holding his favorite blanket, the last thing he touched. Picking out his casket, a 4.5 foot casket. Looking in his closet deciding what he should wear for eternity. Holding his Arizona Diamondbacks jersey, knowing it's the one. The one he wore to his last Dbacks game last fall. A shirt that bought joy every time. Determining what to place with my child forever. His daddy blanket, the aviator Baby Tulablanket he clung to since daddy left for basic training in Spring of 2016. That gave him comfort for 2 years, rarely leaving his side. His stuffed Taco Dragon from his favorite book Dragons Love Tacos. A beloved LEGO police car. For all the Legos that always surrounded him. And lastly Daddy's Police badge, because our son is our hero. Letting each item go, forever. Placing them forever with our son. Seeing my child one last time. Him being honored by Superman, a police officer. Damon Cole (Heroes & Cops Against Childhood Cancer) standing for our son, honoring him one last time in a way only fitting of a hero. Seeing my son in his casket. My son, my child. Cold. Lifeless. Dead. Each moment somehow worse than the last. My arms forever empty, but my heart forever full.
6 years was not enough. A lifetime would not have been enough. But Sammy was never ours. He was always the Lords. Each day a gift. And each moment I’ve been met by God, carried by God. He is my strength, my courage, my hope. He will continue to carry me through the breathless, airless moments I will face in the days, weeks, months and years ahead. Especially as we prepare to lay Sammy to rest with his Grandfather in the week to come. Having to leave Sammy's earthly body in PA and returning to AZ without him. My strength is not mine, but the Lord's.
I may never know the why of this horrible journey, but I will continue to trust that God will create the most beautiful rainbow out of my storm, out of the horrors of this journey. I have faith that God is not finished with Sammy’s story. That His story is greater than anything I could imagine. And because of Christ, I have hope. I know that one day I will be reunited with my Sammy, for eternity. And what a glorious reunion that will be. My heart is broken, and may never be whole again until that day. As there will always be a piece missing. A piece with Sammy, taken to another place. A place called heaven. But one day my heart will be whole again because of Christ.
And while my heart continues to grieve, it is also full of joy knowing Sammy is FREE.

Monday, April 23, 2018

April 23, 2018 : Beads of Courage

Sammy's Beads of Courage. A few beads shy of 1,900 beads. Representing his 541 day fight with brain cancer. From walking into the ER on October 19th, 2016 to his last earthly breath on April 12th, 2018. Each bead has meaning. Each bead stands for a part of his journey. Each holds significance. These are his Beads of Courage.
253 yellow beads, one for every night in the hospital.
44 light green beads, representing the 44 scans done.
47 red beads, one for each blood transfusion.
60 white beads, standing for each dose of chemotherapy given.
453 rainbow beads, one for each therapy session accomplished.
114 black beads, each one a stick, a poke that Sammy endured.
So many moments of COURAGE. Nearly 1,900 moments. Roughly 61 feet of beads, from end to end. Weighing 6 pounds.
My Sammy was brave, courageous and strong till his very last breath and last beat of his heart. I am so proud of him. And so joyful he is now dancing free in heaven. Free of the weight of what these beads represent.

Thursday, April 12, 2018

April 12, 2018 ...and into the arms of Jesus

Earlier today, Sammy took his last earthly breath, and grew his wings. Our sweet Sammy has no more pain, no more suffering. He has won his battle with cancer. He is finally FREE. He can dance again. He can run again. He can sing again. It is with broken hearts he leaves our arms, and is received into the arms of Jesus.
Our plan is to have a Celebration of Life memorial service here in Phoenix, Arizona on Friday, April 20th, most likely in the late afternoon/early evening. We will then be taking Sammy to West Chester, Pennsylvania, where he will be buried alongside his Grandpa Dave (Kristen's dad). Our plan is to have a second memorial service in the West Chester, PA area on May 5th, followed by his burial. We will give specifics, as we firm our plans.
(Update : Sammy's Celebration in Pennsylvania will be held on Saturday, May 5th at 10am at Westminster Presbyterian Church in West Chester, followed by his burial. This celebration will have a closed casket. )
Continue to cover our family in prayer. Pray for us in the minutes, hours, and days ahead. Cover us with prayers of comfort, peace and strength. Pray for our hearts as we mourn the absence of our Sammy and navigate learning a new way to live life. Pray for Logan as he adjusts to Sammy not being with us. Pray for our marriage, as we navigate moving forward without our oldest son. Pray for our family that is traveling and spending time with us in the time ahead. Send praises to our heavenly father for his mercy and grace, as Sammy made his transition from his earthly body. Sing praises that Sammy is restored, that he has been given ultimate healing of Christ. Sing praises to our faithful father, that Sammy is spending eternity in heaven with him. Sing praises that one day we will see Sammy again. This world is not forever, and one day we too will get see the wonder of an eternity in heaven with our son.
1 Peter 5:10
1 Samuel 1:27

Wednesday, April 11, 2018

April 11, 2018

Honestly. I just do not know where to begin for this update. Which is why it has been a few days.
Nearly 3 weeks ago we left Ryan House with Sammy to go home, at his request. Home until we could not handle the care of Sammy on our own. We left Ryan House preparing for Sammy’s end of life. For our final time with Sammy. Three weeks ago, we were told that Sammy had days, maybe a couple weeks at most. But here we are three weeks later. We honestly never expected Sammy to still be here with us at this point in time. We hoped for his sake, and ours that his decline would be fast. But that is not the case. He is declining in a way that is shocking everyone on his team. Sammy is in control. And he is doing what he does best. Leaving us in wonder.
We have had several days in the last week where we thought it was close. But then he would turn a corner and things would improve. We came here on Easter preparing for things to go quick. Less than 48 hours. But here we stand with Sammy still fighting. Fighting till the very end. Because of this we have more questions than answers. We are uncertain of what is truly happening in his little body.
With hydrocephalus, we expected him to decline rather quickly. And certainly not have ups and downs. We are curious if the hydrocephalus self corrected, or if the drain has allowed fluid out once hitting a certain level. We really have no way of knowing. Yesterday, we spoke to our team, as we have so many questions. At the end of it all, Sammy is in control. And we just have to keep listening to his body. But he is showing us things that leave us wondering. So yesterday we asked what if he is improving? How would we know? Can we do another MRI to see what is happening? See what both his hydrocephalus and disease progression are doing?
So we started a new plan. We are starting to taper Sammy’s medications to see what he can tolerate. To see if anything is even worth it. Because even if a scan shows something positive, he has to be able to function and ultimately have quality of life until it is time. Unless miraculous healing has occurred, Sammy is terminal. There is no cure for his disease. And we assume his disease has progressed in the last month since his last scan. As that is the reality of his disease, his cancer. Our timeline just may be altered. We have no idea. So yesterday afternoon we started the taper, to see what happens. We reduced his dilaudid by 10%, and will continue to do so every 24 hours. So far we have decreased from 6mg per hour to 5mg per hour. We have also been able to limit the bolus (on demand) amount we were giving. We have a long way before we really see how he does.
Last night we had another wrench in this plan. Sammy started having fevers. He held at 102.4 for over 12 hours, and has fluctuated in the 101 to 102 range most of today. Fevers can be from a number of things. Infections, neurological, withdrawals. The most logical is neurological change, which can be another end of life sign. So we just have to continue to watch and wait.
Please continue to pray for Sammy and our family. We really are unsure of what our path looks like at this moment. We know that we are in the final time with him, but unsure of how it will look. Everything is a question at this moment and no one has the answers. Sammy is not like anyone else and he will continue to surprise us all throughout this process.
Please pray for Sammy. Pray that he is surrounded by peace and comfort. That he feels safe in the space around him. Pray we are able to see changes as we make adjustments and make the right decisions regarding his care. Pray for us as we handle these changes. We are in a state of limbo and unsure of where we really stand with Sammy’s care. Pray we have the strength to hold together through the time ahead, whether days or weeks. Pray for our marriage. That we can come together during this time of struggle. Pray for Logan as he is faced with so much emotional turmoil. Pray as we figure out how to explain what is happening with Sammy in a way that he can understand. Pray for our family that is visiting and traveling to spend time with us during this time. Pray they are able to be understanding and supportive in the way that will serve us the best. Pray for us all as this journey is still full of so many unknowns and as it continues on. Our hearts are heavy. We are in a very emotional place, especially with the rollercoaster ride Sammy is taking us on. We want what is best for him. We want his suffering to end. We want him to be free. We want this because we have HOPE and FAITH. We know Sammy will be free in heaven. That he will be fully restored, if that is God’s plan for Sammy.
Photo captured by Shawna Wolf Photography

Monday, April 2, 2018

April 2, 2018 : Autism World Awareness Day

Today, April 2nd, is World Autism Awareness Day.
April is Autism Awareness Month.
I love someone with autism. Sammy. Our Super Sammy. Sammy was diagnosed with autism before his 3rd birthday (picture from around diagnosis time in 2014). At the time we wanted answers. It was not about a label or the diagnosis, but the path necessary to help guide us as parents to understand and better support our son. My goal for Sammy’s life has always been the same, autism, cancer, does not matter. My goal never changed. It is the same goal we have for Logan, even with his own life challenges too. To prepare our child for the world, to encourage him to be an independent, confident individual who knows he can strive for the stars. To know he is only limited by the barriers he puts in front of himself. He can achieve ANYTHING. It may be harder, he may struggle, and it may take lots of failing. But he is capable. And he CAN do and be anything.
Autism. I cried for hours when I first learned this was possible for my sweet 2 year old child. I mourned the life I thought I wanted for my son. Thought I wanted as a parent. While autism changed our lives, it was nothing we could not handle. And made our lives better, different, interesting. Having an answer, a diagnosis, helped us know how to best support our child. And that is all I wanted. How can I help my child THRIVE. For Sammy to THRIVE.
So we made a plan. We got support. We did therapy. I learned therapy really was for us. How to help engage him, how to help him learn. How to help him process the environment around us. How to handle change. How to conquer things that were tough. It was teaching us as parents. And him guiding the way. Our expectations never changed for Sammy. We want our children to be able to live in our world. So we expect them to understand our society and the way it works. We just got to help him manipulate society so it worked for him. Giving him tools to conquer the world.
Sammy started with over 40 hours of therapy a week. Majority being ABA therapy. In home therapy. Working on behaviors. Changing negative behaviors into positive ones. How to help him through the tough situations of his day, successfully. We continued speech therapy, which we started before age 2. We added Occupational Therapy as well. We had our team helping us adapt to Sammy daily.
We enrolled him into a traditional preschool. And school was amazing for him. Peer models were key to his success. But his peers also learned from him. They got to see the world through his eyes as well. They got to learn that not all children are the same. And some need more support throughout the day. They learned about visual communication. They learned everyone is different. Sammy just got to be a kid in an environment where he got to be normal. No labels. Just supports in place to help him learn, grow and be successful. The same that should be in place for every child no matter their ability level. We fought for that.
Autism was never what defined Sammy. But it is part of what made Sammy special. We never let autism be an excuse or a reason. We worked through issues like any family would with a child that is struggling. We made changes. We encouraged the right choices. And we helped to be his guide.
I look back over our 6 years with Sammy. He has taught me so much. I am a better mom because of Sammy. Autism was scary. Because we did not understand. It was a diagnosis full of fear, and misunderstanding. A label that terrified us, because it was an unknown, unfamiliar. But I did not know. And soon we did. Autism is beautiful. It is nothing to fear. Is it easy? No. But nothing in this life is easy. In our current situation. Autism prepared me. It made me be the advocate that Sammy needed and deserved.
When cancer entered his life, our life, on October 19, 2016 it was a moment that I will forever remember. But I was prepared to fight for my son. I immediately knew how to fight on his behalf. How to be his voice. How to be his advocate. For the last 18 months I have not stopped fighting. Requesting for better supports in everything. Things that I would have never even known where to begin, if I had not already spent 2 years fighting for him everyday, every hour, every minute. Never taking no for an answer, always asking for what can we do better. Never fearing to ask a question, no matter how crazy it may have been. Because my child matters. Autism taught me that.
Autism prepared me for the hard reality of his diagnosis, of his surgery. The unwanted side effects. We were back to square one. Sammy lost every ability after surgery, every outward ability. We did not know what the days, weeks, months, years ahead had instore for him. But in that moment he could not talk, eat, sit, squeeze our hand, wiggle a toe. He could breathe. His heart was beating. And he was here. But we had the tools to support him. We worked with him everyday to regain abilities.
When he gained control of his eyes, we used big papers with sad face for No, and happy face for Yes. And we started our visual communication all over again. We moved to pictures when he gained more control. And back to a picture communication board when he could control his pointing. We eventually moved to verbal communication, just like we did in speech therapy for the years prior. But we knew it. And we could do it. We had the tools. His autism gave us that. And this time it was not so overwhelming despite the circumstances of the situation.
Every day has been about embracing Sammy for who Sammy is in this life. He is special. Sammy has always been a light in this world. Anyone who has had the honor of knowing him is blessed. And those know why. There is a piece of him that stays with you. I do not say this as his mom. But as something that has been shared with me by countless people over these 6 years.
I am sad we will never get to see a future with Sammy in it. Because we know his life was going to be full of wonder. He was capable of anything. And I couldn't wait for him to keep teaching me. But instead we will get to see the wake that his life leaves behind. We hope his short life impacts our world. And creates a change. We hope to encourage families that follow behind us. Give them hope. Despite the ugly of this world. There is always hope. We know there is always hope. Even in the end. Especially in the end. There is hope.
And soon, sooner than our hearts desire. Sammy will be full of hope and he will be free. He will talk again. He will dance again. He will run again. He will laugh again. Free of pain. Free of struggle. Free of suffering. Free of the limitations of our world. Sammy will be FREE.
“Children with autism are colorful- they are often beautiful, and like the rainbow, they stand out” -Adele Devine