Category: Uncategorized

Jake finished his LAST CHEMO this weekend! Eight treatments of week-long, high-dose chemotherapies are forever in the books! I have tears writing this! It’s kinda all hitting today. Now we move on to Phase 2 – and pray for the direction to know which way to go. We’ll scan in a few weeks to see how much, if any disease is still in the bones. We are praying for NED! (no evidence of disease) If NED, we can focus on the bone marrow and liver spots, and we’ll stay here and press on toward his Bone Marrow Transplant. If there is still disease, we go to MIBG (full body, chemical radiation). It’s in another city. I’m terrified. And anxious. We’ll scan and take bone marrow aspirations in about 3 weeks but in the meantime we have a spot ready for us, August 28th at Cook’s Children’s Hospital in Dallas. We tried something different last week and took Jake’s week of chemotherapy as outpatient. There were benefits to being able to go home and sleep in our own bed but in

the end, if we had more chemo to do, we’d go inpatient again. We had issues with keeping him hydrated properly and EVERYDAY we spent hours trying to get his urine numbers to correct since he wasn’t on constant IV fluids. We got there in the morning and left at almost 6 everyday. We had to finish his treatment inpatient over the weekend and were discharged yesterday. All in all, it was a good week for Jake. His best buddy, Nathan, was also taking his week of chemo at the same time so they had lots of playtime. In fact, he was inpatient over the weekend too so they hung out in our room till almost 11PM. It’s a cancer kid’s version of “sleep overs”. Please keep Nathan in your prayers also… he is fighting Neuroblastoma too… for the 2nd time. As much as it hurts my heart that he hast to go thru this again, I am so thankful for the friendship that he and Jake have developed. When they both BEAT cancer’s sorry butt… I have visions of them at each other’s 16th birthday parties, HS graduations, weddings! They have little boy conversations and playtime… they get to be kids together but they share something that will bond them forever. Okay… on to some business… LAST CALL for Warrior Jake shirts. Sorry, I got a little side tracked and the order WILL GO IN at the end of this week. Shirts are $10 each plus shipping, if needed. We have a PayPal account on this page that you can pay here. If you use the PayPal, please write your name and “SHIRTS” so we know who has paid. IF you want to send a check, message me and I’ll send our address privately. AND THANK YOU!!!! You WILL have them in time for September Childhood Cancer Awareness Month! If you have friends, family, teachers, team mates that might want one when they see yours – now’s the time. GREAT GIFTS! (grins) There is a walk/run for the fall that is in the works so get your shirt ready to run with us! Okay… now for some exciting news… we had a very special visitor this week. Navid with ProJeKT 3000 spent the day with us on Friday. What a wonderful treat and such a kind and honorable man, he is. A life long friend has been made. Jake took to him immediately and Navid honored Jake with a ProJeKT 3000 video on his page to help spread awareness. Please check it out and share it!!!! PLEASE, PLEASE share it on your FB, e-mail, twitter, everything! Help it go viral. Let people put a face with this disease. It’s titled “But Not ME” and I’m biased but it has the cutest kid I’ve ever seen!

[youtube=http://www.youtube.com/watch?v=b56O9o29sIQ&w=590&h=385]<br/
And I have to share this funny… when Navid got ready to go and mentioned driving in his car, Jake looked up with such candid surprise and said, “you drive a car?” He’s only seen Navid on a bike. The innocence in his question and expression on his face is forever etched in my mind. On the way home, he mentioned it again. It really boggled his mind that Navid would get around on anything other than a bike. Then Jake asked if we could send him a photo of his bike. I thought my heart was going to burst. It’s these moments that bring us out of the “cancer world” and back to the everyday world of just an ordinary little boy with sweet, simple requests . Today I’m giddy, giggly, rested. We were supposed to be back at TCH this morning but there was some confusion with today’s treatments and we got an early morning call to let us play hooky (we’ll be back in tomorrow), so we went back to bed! I NEVER do that! Felt great and didn’t realize I needed it so badly. Feeling so much better and so happy to just be home! Jake has some spring in his step today too… he’s home, swimming and playing his “compooter”. So there it is… Phase One in the books! Now we wait. We let Jake recover from this round of chemo. We pray! WE PRAY WITHOUT CEASING! Please pray with us for NED! We really don’t want to put Jake thru MIBG treatment but we are trusting that God already knows where we are heading. I mentioned it in one of the first posts and we still believe… This is His battle to fight, Jesus will carry Jake, and we will follow. “Let the peace of Christ rule in your hearts”… Colossians 3:15 Love, hugs, blessings and prayers to all of you, Jake’s Prayer Warriors! Don’t forget to order your shirts and SHARE the ProJeKT 3000 link below… September is coming! http://www.youtube.com/watch?v=b 56O9o29sIQ

Jake had some minor surgery yesterday and is doing great! The chemo has not been kind to his teeth (think I’ve mentioned this) and we had to fix them before Stem Cell. We will eventually get there so had to be sure this was checked off the list. We are hoping that the chemo is eating away at his bone disease and marrow the way it is eating away at his teeth. His next round of chemo is scheduled to begin Monday. He’ll be on the pole for a week and it’s the same drugs as last time. He’s been out of treatment for five weeks now. This

chemotherapy combo was a doozy and his counts just aren’t recovering like they have. This week has been the first time I’ve felt some confusion and concern from his team. We’ve been on, off, on, off, all over the place trying to figure out his counts and how/when to get him back on track with his next treatment. The good part of having this time is that he has had some really happy days and is eating like crazy! He’s had lots of energy (and transfusions to help with that) but it’s been too long and we don’t want anything growing that shouldn’t. Speaking of transfusions… we have a new fave place! As we leave the med-center, we’ve been stopping in for ice cream at Ben & Jerry’s. It IS summer after all. Jake also made it to his first baseball game and LOVED it. He’s asked all week when he can go back again. And we’ve been heading to the park at dusk, when it’s vacant. Strange tid bit… mosquitos don’t like Jake. They swarm us, but not a bite on him! This morning I found some pictures from this time last summer. My initial feeling was sadness at the innocence lost and how physically different he looks now. It’s not just his hair, but his facial features and his body. His weight has yo-yo’d so much this year that sometimes he looks like a little old man. But then it hit me… we have him here, we’ve had TIME and lots of new memories. Many of them have been hard and painful but so many more of them have been full of joy and love. We’ve witnessed God’s strength through Jake’s perseverance and his ability to bounce back time and again… and for that I can’t help but be thankful. This song has come on a couple of times this morning so it must be a sign, reminding me to trust and praise Him in all we’ve been through so far… to praise Him in the rain. http://www.youtube.com/watch?v=GIFOPWHjA6c by Mercy Me. I love all of the artwork that accompanies this video, hope you like it! It’s been a really tough week in our cancer

world and lots of tears. Please pray for the families of Will, Bridgette, Talia, and Abigail. Three of them fought Neuroblastoma, they were all FIGHTERS till the end. In my humanness, I can’t help but believe that in the midst of celebration in the Heavens, there had to be a bit of sadness at how many little ones walked through those gates.

“God who foresaw your tribulation, has specially armed you to go through it, not without pain but without stain.” C.S. Lewis

First piece of business… Jake didn’t make counts for this week’s chemo admission. In fact, he lost ground for some reason. Last week his ANC was in the 900’s – not great but fine. Today, he’s neutrapenic again at 480, even his platelets took a dip. Strange, but we’ll head to clinic again Thursday and shoot for chemo next Monday.

Now for some important stuff (in my mind anyway – grins!) Thought I’d put a shout out on something near and dear to our hearts… September is Childhood Cancer Awareness. I know, it’s only July but it will be here soon! We all know how fast these last few weeks of summer go and then BOOM! Fall is here, we’re back into our school routines, little leagues, even holiday preps. The thing is that everyone knows what the pink ribbon signifies. It is a huge and needed accomplishment for breast cancer. But very few people know what the gold ribbon represents. We NEED to change that! There is a movement throughout the childhood cancer community to turn September GOLD! Everything from the White House, to the NFL/MLB to all of the community centers, libraries, police stations, neighborhood club houses, bridges, businesses, restaurants, little leagues, everything that illuminates, everywhere that people gather, big and small. Change out light bulbs, organizations and sports teams wear ribbons, hang a gold cancer ribbon flag, post something on your work, church, neighborhood marquees… get the word out! Now is the time to make plans, September will be too late. I’m sure my FB page sounds like a broken record. There are probably quite a few people who are tired of seeing Gold in September posts, I can’t stop. It’s important. And since many people read this site that aren’t on my FB, I must share here too. My son’s life and all of these kids, are special and deserve to be seen as the GOLD that they are! So here’s a link to a petition to let the NFL/MLB know that we want, WE NEED their support. They wear PINK in October, why not GOLD in September? Millions of people tune in each week and their help would bring such awareness. Here is the link to just one of the petitions http://www.change.org/petitions/nfl-mlb-wear-gold-for-september-for-childhood-cancer-awareness-month

I also ask that if you know of anyone, please do what you can. Just ask! Some are planning gold uniform socks, little ribbons for the attendees in the stands, painted gold ribbon tattoos on arms and helmets. It’s not just about the big venues, it’s very much grassroots, right here in our backyards. Ask your neighborhood club house, your kid’s soccer, football, baseball and cheer teams. Ask your business if they will consider something on their webpage, their marquee, something outside of their business – like light bulbs or a flag. We have our yard flag ready thanks to Angels Making A Difference. (If you’d like one too, here’s the link http://www.angelsmakingadifference.com/product/misc/childhood-cancer-awareness-garden-flag/ ) NOTHING is too small and our kids like being involved, their little hearts and ideas are so much bigger than we realize. Let them run with their ideas and ask people they know too. Another thing I’d like to share is ProJeKT 3000. This young man is biking 3000 miles across country this summer to raise awareness for pediatric cancer and raise $15000 for childhood cancer research… his personal specialty is Neuroblastoma (which certainly brings him near and dear to us). He’s riding strong, visiting local hospitals, and sharing real kid’s stories with everyone he meets along the way. … Less that $5200 has come in and his ride ends July 12th. This is the sad reality of childhood cancer fundraising and why there is so little funding for research. Navid packed up his bike with water, camping gear, photo equipment, everything he would need – it’s heavy and cumbersome but he’s doing it… even through the deserts of AZ and the fires of CO, rain, heat, and rocks to the head by passing truckers. It has been a remarkable thing to watch his daily trials of joy and difficulty, physical pain and personal triumph. Here is the FB page and website https://www.facebook.com/ProJeKt3K?fref=ts . He has posted a handful of videos along the way and here is one he put together one night while resting that honors our little fighters and includes Jake. https://www.facebook.com/ProJeKt3K/app_57675755167 Last week, he asked for those following him, if so moved, to give up one fast food meal for the week, just $5. Please consider giving up one of your lunches this week and sponsor this cause! It will make a difference! It will go to the right place!