One More Step

1800179_10205274378765623_3659403097702650582_n"Give your burdens to the Lord and he will take care of you…"  Psalm 55:22 (NLT)

It's been a while since I've written… early September, actually… when we were told to "take Jake home and love him, make memories".

So we did.

The past six weeks saw so many hospital days, too many, as he fought back fevers, his pain increased, and he needed blood, platelets, and host of meds and fluids to sustain him. But we were able to do some things that will give us greJ and Grow Groupsat comfort in time. For the first time in two years, Jake was able to attend Wednesday night church Grow Groups. To be included again meant the WORLD to him. In fact, the first week, he melted down when it was time to go, he loved it so much. He went to the movies with Daddy and the boys, was able to attend Nikolas' birthday party and actually PLAY the video games, and Daddy and I took him back to Disney for a day where he could ride his most favorite roller coaster, Thunder Mountain. Our cancer family came together and brough2014-10-08 17.03.20-1t Christmas in October. Just four days before he passed, Jake had his last Christmas, complete with snow, gifts, Santa, and a real reindeer. Most importantly, our family spent some treasured private time in South Padre, Jake's "faborit  place in the whole wide world". The weather was perfect, the beach was mostly empty, and although his pain was worsening, it was somewhat managed. We took him parasailing, "way, way up in the sky" and he absolutely LOVED it. Jake was in the water quite a bit and wanted to be out at the second sand bar w2014-09-11 18.22.25-2ith Daddy as much as possible. As we played one day, a storm rolled in. On one side, the sun shined so bright, on the other were these intense, dark clouds. Then, while the sun was still on us, the rain started. The big kids had just gone back out into the ocean with Daddy and Jake was sitting a little way from me, digging and building. The rain started softly for a while and then these big drops started falling… no thunder, no lightening, just rain. Far out over the water, a rainbow began to slide across the sky and grow. I bawled. And prayed. No, begged. I've never experienc2014-09-11 18.23.25ed anything like that but I could feel God telling me He was coming for our son. He was giving us that last bit of time with Jake but He was coming very, very soon. Even though we heard that we needed to take Jake home and prepare, we were in denial… still making calls, researching, visting doctors, trying to find something that would offer enough time for a cure. At that moment there was a knowing in the depths of my soul and sitting in the wet sand with the rain coming down, I knew that Jake was truly leaving us. I sobbed that I knew He loves me, I knew He loves my son, but please don't take him back. As the rain came down harder, the sky lightened up and there was sunshine. Right then, my prayers shifted from begging for his life to begging for mercy, and for Jake to not suffer. When the rain finally let up, another rainbow slid across the sky right above the first. God had spoke to this mother's heart so purely.  

In so many ways, those prayers were answered. Jake did suffer, but not the way many kids do, nor for as long. Those last days were not good to him and those last hours were so labored. Just hours before he passed, Henry and I were able to tell him that he was going to Heaven soon. We explained that we would be there to join him in no time. We told him it's like when I leave him for a play date and he's having so much fun that the time passes so quickly… and then I'm there to get him before he's ready… that's how fast we'd be there. It was one more step, our last step to this journey God laid before us… to prepare him… to tell him that it was OK to go.

Those last breaths replay over and over for me. I'm struggling to find peace in those final moments. In two deep breaths he slipped from this life, right there in our arms. All I could think is that he just got here, how could this be? There is nothing in the world that prepares parents for that moment of stillness. The world stops and blurs, everything is in slow motion. There is such brokenness and the ache is felt with each heartbeat… so much, that your chest feels physical pain. I'm told that it will become more bearable, never gone, just more bearable. There is a beautiful song that hit the airwaves a few weeks ago and it makes me cry every time but it also touches me in a way i can't put into words. I'm drawn to listen, I can't change the dial. I know what she means at the end and I'm trying to think of the breath of Heaven filling his chest, rather than his life leaving it.

~~It's one more step, just blink your eyes
~~You'll be home on the other side
~~Running down the golden streets
~~You'll hear a million angels sing
~~So one more kiss on earth is all that's left
~~Before the breath of Heaven fills your chest
~~And you'll finally see His face and find your rest
~~One more step

Everyday I pray for a sign from him. I'm trying to imagine him so engaged in all the things that he didn't get to do here that he just hasn't had the inclination to stop and check in yet. I know he will, he was like that. Such a momma's boy. He would peek in on me throughout the day, wherever we were, and say, "I'm just checking on you". Once he was content that I was still there and ok, he'd run back to whatever had his attention. 
 

Henry and I have moments where we are ok and moments when the flood gates open. Yesterday morning, Kate opened a lunch box that we hadn't used in a few weeks and inside were these tiny little dinosaurs safely hidden. Then I remembered that one morning when we were preparing for the hospital, instead of taking his lunchbox with food, he loaded it up with the little figures. Part of me smiled at his little boy treasures and the other cried because I just miss him so much.
 

H10173677_10205094082301134_3437101071546817142_nenry and I have talked a lot of the gift Jake was to us. He was a miracle. The whole pregnancy was scary and difficult but he made it. As a baby and we rocked, I knew that he was our child intended for ministry. I always felt deep down that he would do God's work in some way. In fact, I hesitate in admitting this but that feeling was so strong, it scared me. I actually prayed that whatever he chose wasn't dangerous, that it wasn't in some far off place where he could loose his life for his mission. Yet, in a way he did just that. He wasn't in some far off place, he was right in his own little boy world and it turns out that his work was special, and it indeed came with pain and hardship. I believe God was working through him and his story. So many fell in love with him, prayed with their families in new ways, saw God was in the middle of his journey. I'm trying desperately to find peace in that too. So if you ever have stories, don't be afraid to share them. You may get a few tears but mostly there will be joy that you remember Jakey and were touched by him. We gain strenght and comfort from your memories. I know he's playing in Heaven with so many of his little friends that were hand picked way too early and we feel his story isn't over… only God knows what that may be but for now we are blessed that his legacy is one that lead friends to Christ and hope that it will continue to aid in research and changes in pediatric cancer.
 

Before Jake passed, there w10377521_1693147160911362_1360848052094053526_nas a benefit in the works called Just 4 Jake. He called it "his party" and it's this Saturday, Nov 1st, 2014 from 11 AM – 7 PM. He was involved in the planning and had big ideas for it. The day will be full of family and joy and you can come & go as your schedule permits. He was a little boy who loved to play so we invite you to come and celebrate Jake's happy life with us. You all are part of our family, We have been blessed by your prayers and love. 

Soon, we'd like to share Jake's service day with you all. The balloon release was a celebration so incredible. So many came together to honor his short life but we see it more as one more way that God used Jake to bring people together in His name… it was a truly special, special day.
 

"You are of God, little children, and have overcome them, because He who is in you is greater than he who is in the world."  1John 4:4 (NKJV) 


One More Step by Lindsay McCaul  [youtube https://www.youtube.com/watch?v=-D9iLGTGS98]

 

 

 

September

2014-09-04 12.08.31Here we are in September… Childhood Cancer Awareness Month. And it was two years ago, in September, Jake was diagnosed with cancer. We were told to gear up for the fight of his life, that the statistics were low, that getting to the other side of this disease would be the hardest thing we've ever faced but it was possible. The morning of his first surgery, my friend Paula encouraged me that someone had to be in that 30% that make it, why wouldn't it be Jake? There was real hope that a cure would come. Today, here we sit, two years later, and we are being told that a cure will not come. We've heard this before but this is different. Our doctors are realists, they are hopeful and brilliant and caring, but they see things daily, things we can't imagine. And they are saying it's not going to happen, that we need to make memories.

When they say things can turn on a dime… here is what that means. Last week we were making plans to 2014-09-04 11.55.58spend 4 hard weeks in the hospital and then head to NY. Today we met with his team and were told that we should begin making plans of a completely different nature. Jake's scans came back with very aggressive progression in all areas, his bone marrow, bones, liver and lungs are all riddled with tumor. He has become chemo resistant. TCH feels that there is nothing more they can offer, other than palliative care of a very low daily chemo in hopes to slow things and offer pain relief. We find this difficult to accept, yet there are signs. He has been experiencing intermittent pain (he has pain, we medicate and he's fine again). He's happy and bouncy and normal but there are things Iike the moments that he cries out in pain and says it feels like it's burning on the inside and the outside, the night sweats, more and more bath time, the whimper2014-09-04 15.36.16ring in his sleep. As a parent, you know that there is something different, wrong.

His scans have been stable for the last few rounds, even slightly improving. We expected the same to be true again but the cancer has blown up. We were warned this was possible but it's that deep denial that offers parents the hope needed to do these kinds of treatments to their child. Becuase of the progression they have pulled the HD-ICE which means NY is out. We've looked at everything. EVERYTHING! At the moment, any possible treatment lies in Michigan. We over nighted the new images to Helen DeVos in hopes of some kind of different news. NY, TCH and MI all agree the HD-ICE is no longer in his best interest. We ask for your prayers as it is unbearable to look at him, see him bouncing around and hear this news. Jake does not know any of this.

Because education and awareness is everything, we have a video we were saving for this month. Jake was on this trial last year at Cook's Children's Hospital. It is not intended to bash this therapy, it is intended to show what our children experience, things that no one knows, to show that more is needed. Our children are suffering, there are no good treatments but mostly THEY NEED MORE!

Please forgive how fast it's running. For some reason when we transferred it to YouTube the tempo increased, making some slides too fast. I don't know how to fix that. Please share, I know many don't want to see these things, but things won't change unless people know. [youtube https://www.youtube.com/watch?v=NL2OPhdsTPo]  
Video Link:   https://www.youtube.com/watch?v=NL2OPhdsTPo

THANK YOU for going GOLD!!  We've seen so many of you taking the cause on in full force. We've seen many of your Whipping Childhood Cancer Challenges – keep them coming! (If you missed it… it's the national call to help us Whip Childhood Cancer with a pie to the face. If you take the challenge, nominate 7 friends, take a pie to the face and donate $7 to a childhood cancer foundation because 7 children die EVERY DAY. If you don't take the challenge, donate $46 to a childhood cancer in honor of the 46 children who are diagnosed each day. Post your video and let it spread!) If you haven't been nominated yet, don't wait. Start it up! Jake nominates you… every single one of you that are reading this today… YOU ARE NOMINATED BY JAKE. Let the world know that children are fighting for their lives and we need to FIGHT FOR THEM!

Please continue to pray for our family. Pray that Michigan has SOMETHING! Pray over the symptoms Jake is experiencing. Pray for a miracle!!

We send you all our love and gratefulness for walking this journey with us.
 

~~
Many of you have asked what CHILDHOOD CANCER FOUNDATIONS we recommend for your Whipping Childhood Cancer Challenge. Here are some of our favorites…
CNCF – Children's Neuroblastoma Cancer Foundation
Alex's Lemonade Stand
Peach's Neet Feet
St. Baldrick's

And for local foundations…
BIG Love
Brennan's Buddies
Competing For Hope
Jaquelyn Sky Foundation (Jackie's House)
Jesus Is Bigger Than Cancer
Linked With Liam
Zoey's Angles
All of these are amazing, local foundations that serve TCH and MDA right here in Houston… and are tied to families that I know personally. They have FB pages or you can Google for their websites.

The Gamble

2014-08-20 15.05.35Yesterday we spent the day getting Jake juiced up on platelets and meeting with Doc H. It was a pretty good day for Jake as he loaded up on Chick Fil A and Oreo milkshakes and kept busy with play dough, Wii and movies.

The big news is that TCH has approved administering Sloan Kettering’s HD-ICE treatment to Jake. We will go inpatient the second week of September and we will be there at least a month. While this is ultimately good news, anxiety is high. Essentially, this is a stem cell transplant with a different combination of drugs, using a different name, for a kid that doesn’t qualify under normal circumstances. You can’t help but second guess every decision that is made when dealing with something like this.  His quality of life is really good ri2014-08-21 13.25.47ght now for a cancer kid. There are so many ‘what ifs’. He will be so, so sick! He's going to come out looking like a different boy – a tiny, bald, skeleton of his little self. We feel a little as though we are rolling the dice and I don’t gamble, so gambling with our child’s life is almost sending us over the edge. Here's the turmoil… we've hit a fork in the road. One path we stick with what he's doing and have quality of life for a little while, never a cure, eventually we lose him, no question. The other path, we have horrilbe sickness, probable complications and infections, possible long-term side effects, BUT possibly, eventually, a cure. The odds are small but they are there. POSSIBLE = HOPE!  We were told in Chicago it's time to "go big or go home". So we're thowing all our cards on the table. This is as BIG as is available to him. Look at that face… we're going BIG!

Thankfully, there is a LOT to do before we are admitted so maybe the preparation will help with the nerves a bit. Jake will have his CT scan, MIBG scan and bone marrow biopsy next week, then he’ll have his EKG, ECHO, and GFR the next week, then be admitted the following week

So there we have it… another “new plan”. I think it’s about the 100th but I’ve lost count! Please, please pray that he has superhuman strength and his little body fights hard and fast so that the pain and sickness will be as short as possible. Pray that this delivers the punch we need to get to the next step in the process. Mostly pray for his little boy self… he’s wise beyond his years in ways no child should be. Someone commented recently that he has an old soul. I’ve heard this before, but at that very moment, it really impacted me and this sadness washed over in a way I can’t describe. You hear this used quite a bit toward cancer kids and I've never paid much attention, but I get it now. Pray for our kids as they put on a brave front – this is harder for them than they ever let on. Pray for Henry as he will have so many balls in the air. We’ve had a good go lately, without much hos2014-08-21 15.09.08pitalization, so knowing that we are walking back into that world carries a load of dread. The first year we were swept in without knowledge or expectations of what we would experience. This time we know. I think it might be easier not knowing. Last, please pray that we can explain all of this to Jake in a way that he understands. He doesn’t feel sick right now so he questions if Mr. C is still there. I’ve worried that this would eventually hit. How do you explain to a six year old a sickness that he can’t see , when he feels pretty good right now?

Oh… one more little, BIG, prayer… pray that the BMT floor is full and we are moved to NINE!!! (That is our home away from home!) GrinsWhipping Childhood Cancer pic but serious!!!  cheeky

And a little something to get your wheels spinning… there has been such a great response to the ALS challenge that the pediatric cancer communtiy is following suit in hopes to bring awareness and raise money for research during September. We hope that it will get as much attention and people will have just as much fun participating… it's the Whipping Childhood Cancer's Pie in the Face Challenge. Leave it to kids to think a pie in the face is funny, AND WHY NOT?!!  In all they face, they are still just kids that want to play, giggle and have fun. What's better than a child's belly laugh and a pie in the face has a way of doing that for them. Here is the FB link with details but don't start till September!!! Let's honor those that fight ALS and give them their speical month to raise as much funds and awareness as possible. https://www.facebook.com/whippingchildhoodcancer or http://bit.ly/WhippingCancer
 

To close… here's a little something to make you smile, something that Jake wanted me to share… it's one of his favorite youtubes The Duck Song  https://www.youtube.com/watch?v=7jjcAuEYW9M

And here's to all us old timers. This song just keeps playing in my head, guess I can't help but go back to my roots sometimes. There's something truthful and somber but freeing, so just go with it… ADMIT IT, your singing!  Love Kenny!   https://www.youtube.com/watch?v=Jj4nJ1YEAp4