Author: Mardon Hickford

We’ve been home for almost a week now from Jake’s last neutrapenic fever stay. Fortunately, this one was brief.  We were only in the hospital for 4 days. ONLY!  But we’ll take it.  I don’t know if I’ll have the chance to write much this week as it will be super busy so I’ll go ahead and fill you in and ask for prayer now.  All of Jake’s scans/tests have been moved up.  To THIS week! For those of our med friends out there, here goes… his bone marrow aspiration will be Tuesday, on Wednesday his CT scan and later that same day his MIBG infusion, then on Thursday his MIBG.  He will be sedated for two of these procedures. I HATE sedating him!  We will meet with the Doctors late Thursday to review the week’s results.  All of this is happening so fast because Jake’s MIBG Radiation has been moved up at Cook’s Hospital in Dallas and our consult and registration is Monday, the 19th.  If all goes as planned, Jake will be admitted to Cook’s on Aug 25 and will begin treatment two days later.  So here’s the thing.  We are praying for NED on these scans.  These feel like the biggest scans we’ve had yet… they tell us what the past 11 months have done……. so you can see… SCANZIETY! (Not my term… it’s very well used thru the halls of most hospitals).  We are praying for NED so we can go back to our original road map and bypass all of the MIBG treatment, and here is a little synopsis of why… the treatment that we are gearing up for is MIBG full body chemical radiation. It’s horrid!  It’s actually tolerated fairly well by the patient but it’s side effects are yet to be completely known.  It has been linked to later AML diagnosis’.  It’s administered thru an IV using MIBG contrast and seeks out the neuroblastoma cells (like MIBG scans do) and attaches to the cancer cells to destroy them. But it’s chemical radiation so he’s truly radioactive for a good 8 – 10 days.  He’s held up in lead based room with lead panels all around his bed.  The HazMAT team is close at hand at all times and the first 24 hours, I can’t enter the room. The second day, I may enter for about 15 minutes per 6-8 hours, wearing a geiger meter. As the days progress, I can be in the room more and more but I’ll be decked out in a radiation suit and will have very limited contact with him. There is a large observation window with an intercom. Worst part, he can’t bring his “blankedy”.  Anyone that knows Jake, knows that this will be pure torture.  What goes into that room, can never come out. It’s INSANE!  We are just praying for NED with these scans so we can go to BMT instead.  But we get the impression by all of the planning for this treatment that they expect to still find more disease than he can have for BMT.  So we pray, HARD! In the meantime, there are lots of back to school preparations to get done and we’ve been invited

to the Dynamo game next weekend where they are featuring the Bald Is Beautiful project and trying to beat the world record with head shaves.  Big brother, Cameron, will be shaving his head in honor of Jake. Which by the way, Camman turned 13 yesterday… a full-fledged teenager in the house!  And look at all that hair!  That is going to be some major shaving.  So, as much as we have on our hearts to pray about, there are some exciting things to keep us busy.  Here is some more exciting news and THANK YOU’S…  THANK YOU to these businesses who are GOING GOLD with Warrior Jacob shirts in September……..  Dr. Lyles Orthodontics office, Dr. Boltz Chiropractic office, Cathedral Energy Services, Avante Laser & Medi Spa and TWFG. We are thrilled and honored that you will join us and take a stand for Childhood Cancer Awareness, along with your staff and clients.  If anyone else would like to GO GOLD in their office, contact me and we’ll set ya up!  For now, I ask you to PRAY for NED!  I ask you to pray over this week of scans and tests and sedation.  Jake doesn’t have a great history with sedation and we’ve had to deviate from the standard drugs to others so this makes us nervous. I also ask you to continue praying for our friend Sean.  Please pray for a miracle… they happen!  All the time!  Sweet, sweet Sean needs a miracle.  Here is his beautiful family… Sean with his parents and brothers – he’s on the far right.  “In the morning, O LORD, you hear my voice; in the morning I lay my requests before you and wait in expectation.” Psalm 5:3

Prayer Warriors, I come to you tonight asking for prayer for one of Jake’s little friends, Sean. Earlier today, Sean was taken from 9 to the PICU. I have been praying and praying all day. Earlier, when I stepped off the elevator, I saw my friend, Wendy, running into the PICU double doors and I knew something was wrong. I started praying right then. A little bit ago she came to our room to tell me what’s going on and with her permission, I ask all of you to storm the Heavens. He will undergo more scans tonight to get a better idea of what they saw but as of now the initial news is devastating.

Please pray for a miracle. For a clinical trial to open up for him. For the scans to be something other than what they assume. ANYTHING! Just pray for him, and for Wendy too. I tried to pray with her but through my tears and blubbering, I

just don’t think I offered the comfort that all of you can. I know that you all bring such peace to us when we need it most, so I ask for you to do the same for them tonight. God bless and thank you for always being here.

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