Category: Mom’s Blog

We were postponed AGAIN! I’m sorry I didn’t update yesterday but I was too fried to get online. Here’s the low down… We got to the hospital nice and early yesterday morning, got all signed in, gave our hugs to Meghan and Adrian, and headed back to the pre-op area where they discovered crackling and wetness in his lungs AGAIN! He was checked Thursday and sounded “clear” but not yesterday. We were sent down for another chest x-ray and after about a dozen different people consulting over what seemed like an eternity, the decision was made to postpone. The amount of time Jake would be on the table, the amount of fluids and blood products they would give him and the fact that he would be starting with lungs that were not up to par was not a combination they felt comfortable with. They just kept calling more and more specialists, sending red flags. There was obvious apprehension. I’m sure it’s not easy on their part to call off a surgery,

surely there is a lot red tape. I suppose there is always a responsibility aspect of how did we get this far and not catch this earlier? Yet, I can only imagine how it weighs on them to take a child into such a difficult and long surgery with the possibility of undue complications or worse. Talk about an emotional roller coaster! It takes so much out of you to emotionally prepare for something like this. BUT we are at complete peace with the decision. There was so much reservation that there was no way we could have sat in that waiting room feeling confident after having SO MANY Docs, nurses, anesthesiologists descend on our child’s behalf, conferring and looking to one anther for guidance. Our trust and faith in them is strenghened that they would regard our son the way that we do. They took no chance and we are grateful beyond words. Some cool stuff… What also came too light is that they had planned an epidural for pain management but Jake’s platelets came back at 57. Now this number is actually REALLY GOOD for him… but they won’t administer an epidural unless his platelets are above 90. We now have a week to allow his platelets to climb even more! We also learned that the last lung scan on Feb 4th showed some fluid and a small collapse in the lower right lung. The new scans show the collapse is healing – the lungs look good we just have to get them cleaned up, the fluid and crackling gone. So this just shows how God was in that room for sure! While we were all focusing on the BIG decision of the day, there were little things behind the scenes that God was handling, telling us in His quiet way “I’ve got this.” God was in that room for sure! We will be at TCH on Monday and Thursday for tests, scans and pre-op appointments, again, to get him cleared for surgery next Friday, Feb 22nd – when we will storm the heavens once more! Thank you for “stationing yourselves” to watch God in action and pray on Jake’s behalf. As a scripture that my sweet friend Stacia’s dad sent says, “Do not be afraid or dismayed because of this great multitude, for the battle is not yours but God’s….You need not fight in this battle; station yourselves, stand and see the salvation of the Lord.” II Chron 20:15-17

I know Who goes before me
I know Who stands behind
The God of angel armies
Is always on my side
The One who reigns forever
He is a Friend of mine
The God of angel armies
Is always by my side
Whom Shall I Fear Lyrics from Chris Tomlin http://www.youtube.com/watch?v=qOkImV2cJDg

RESCHEDULED! Yep… that’s right, Jake’s surgery is rescheduled for Friday, Feb 15th! Our Doc has hurt his back and feels he needs a couple of days to heal before he stands for 12 hours. WE AGREE! So with all the other prayers we have swirling, please pray that Dr. V heals and is ready to go Friday. We need steady hands and full focus on Jake. Since I have your attention, thought I’d share a couple of pictures. Also, more than a few people have mentioned that reading Jake’s blog is hard, that they can’t read it anymore. I understand. I know what I

write is not easy to read. I want it to be that way, to be real. I want it to hurt. There is a song that says “Oh Jesus, friend of sinners, break our hearts for what breaks Yours”. I want the world to know that these kids endure things that we can’t imagine, yet they get up and face each new day with playful smiles and kisses and their childhood dreams in tact. This world is one of unspoken things – and it shouldn’t be. It’s sad and scary and there is loss everyday, but there are such miracles everyday too. If you have to leave the blog for a little while, that’s OK. But please come back every once in a while. Check in so you don’t miss what God is going to show us! Jake WILL be healed!!! Now… on to a day in the life and pics…………. when we head in for TCH Clinic days it means we see friends, we get pokes and some days are stressful and full of tears but some days are calm and happy and short. Emotions can run high, there can be terror and pain but there is LOTS of love & understanding and hugs & fist bumps. Life continues and there are good times, even for cancer kids. There is playtime, with giggles and hall races and a treasure chest full of toys after a big, bad “poke”. There are the most gentle, wonderful angels that walk the halls of TCH. They are friends, nurses, doctors, playmates. I have pictures of our latest Clinic day. Look at Jake and Jacoby playing in the space ship playroom – running, tagging, belly-laughing, screaming, falling on the floor and bouncing off the mirrors. All the things little boys should do (and some things Jake shouldn’t be doing with a fractured vertebrae but who can stop this much fun???). Then, there is Saraben, our Child Life Specialist. She can get to Jake when he is in a place that no one else can reach. She is brilliant, genuine, steadfast, all heart, and FUN! When Jake knows he has hit his limits or is about to face something he can’t handle, he specifically calls FOR HER… that says it all. Hope you can see just a little of the special people and “normal” days that are blessings in the midst of this storm and so very treasured! We send our love, and hugs, and blessings to them and to all of you, for you have our deepest gratitude for sticking with us and for sharing Jake’s journey with so many! God’s blessings and Happy Valentine’s day… may it be full of love & laughter. (If you want to hear the song I referenced… http://www.youtube.com/watch?v=BY6VAy9y_iQ )

Feed your faith and your fears will starve to death. That was a post today from a FB group I follow called Little Warriors. This may be a little difficult to read at first, but I promise I will finish with good stuff. I’ve been walking around for the past two days trying to get all the things done that need to be done before we hunker down for the next week or more at TCH. Tomorrow we head in all day for pre-op and then Wednesday is the BIG DAY! I have to take a deep breath as I write this… my nerves are building. While I’m nervous about Jake’s surgery that is expected to take anywhere from 8 – 12 hours, it’s the days following that I am anxious about most. Nothing prepares you for what you see when your child comes out of a long, complicated surgery. They are ghostly, all color is drained from them, their little eyes are purple and deep-set, their lips have no color and are raw and chapped, there is an oxygen mask, tubes and wires and machines everywhere, you’re afraid to touch and hold them for fear that you may hurt them. Jake will have will have a six inch insicion going across his little tummy – that’s huge for such a little bitty thing that is all of 33 pounds. His last surgery was almost 5 hours and seeing his fragile, unconscious, little body lying in recovery brought us to immediate tears. The aftermath is days of not eating, watching their little body get smaller, seeing them drugged and wornout. Then there is the actual day.. it’s hard to wrap our minds around the fact that we will sit in a room for hours upon hours while they have him open on a table trying to take out the very mass that started all of this. It won’t take his cancer away, there is still so much treatment ahead, but the place that it all began will be gone. For our medical friends/family, this is for you… the mass stems from his adrenal gland. All of it will go. It is close to the spine and encompasses the renal vein and part of the renal artery. This means our surgeon must break the mass apart and carefully dissect it from these veins. He feels confident about the surgery but did say that they will be watching that kidney over the next couple

of months as there will be trauma during surgery and the restriction of blood flow could cause it to fail. It won’t happen immediately, it is a slow process, if it happens. There will be special meaures such as specific drugs to coat those veins while he is working on them, and speeding up Jake’s heart rate during surgery in order to expand those viens so that blood flow to the kidney is increased. He will likely take a few spots from the liver to see if they are “active”. The scan showed the spots reduced but until we do the MIBG, we are unsure to how much of the cancer is truly being eaten by the chemo. A liver biopsy may give them a sense of how those areas are responding. Seems there is always something new but for now, we forge forward with high hopes and LOTS of prayers. We expect to spend 2-3 days in ICU so we may not be easy to reach, but we will try and update FB or the website when we can. In the meantime, we had few days of fun. We were able to spend some time with BFFs Eryn and Tracy with a playdate to the park & the dinosaur exhibit, where Jake found Big Foot (because “ya know Mom, Big Foot was alive with the dinosaurs”) – he’s a BIG FAN of the Finding Big Foot show! We visited 104 KRBE to meet with Roula and Ryan from the Morning Show. (Check out Yoda in the KRBE waiting room

wearing Jake’s Make Cancer Extinct bracelets!) Jake was able to make a very short visit to his preschool last week and see his friends – he hasn’t seen them since September so this was HUGE! We had a visit from an old HS friend, Todd, who gave Jake his Army Gimlet Crest (Jake put it next to his Wreath’s Across America pin on his fave red beanie – see above), we made it to Nikolas’ first soccer game (our grandson), and Lady Goo Goo Ga Ga came to play today. Jake adores her, and I do too! For now, I pack, Jake plays, Henry prepares, the kid’s ask lots of questions and we ask for your prayers once again. My dear friend and Faith & Fitness partner in crime, Shana, and I have this thing “100 PERCENT!” It’s about Keepin’ the Faith all the time! Just when anxiety started to creep in yesterday… along came her text saying, “I love you, 100% ALL IN!” My God wink for the day to just let go and let God handle it all. They say that God gives us angels here on earth in the form of friends… we are so blessed to have so many angels surrounding us, holding us up, lifting us in prayer. THANK YOU just doesn’t seem adequate. You all continue to move mountains for our family. Your calls for healing are being heard, prayers are being answered, our son is a miracle in the making… we just know it. We wait, and we pray, and we enlist you, Jake’s warriors, to take his surgery to the One who will be in that room Wednesday, guiding our surgeon’s hands. Our faith grows with each day, each procedure… and your faith that this will one day be behind us, builds us up, feeds us, starves out our fears. God continues to prove what he promises – a shield, a refuge, a comforter, a restorer of the soul. And as we sit Wednesday morning we will pray to… “Be strong and courageous. Do not be terrified, do not be discouraged, for the LORD your God will be with you wherever you go.” Joshua 1:9 We’ll be singing… http://www.youtube.com/watch?v=XtwIT8JjddM 10,000 Reasons (Bless The Lord) by Matt Redmond