There. Wrote it. Terrified.
It's something that's been discussed and tucked away since the beginning, the one place we've steered clear of as long as possible. Maybe because it's so far, maybe because the treatment will be difficult for him, but mostly because I know Jake and I will go it alone for most of the time… without Daddy, without our support system, without anything familiar… SO FAR AWAY! We have officially consented for Jake's files to be sent out and now we figure out which trial they feel is best. There are two that he's up for… both are Hu3F8 but they have some differences.
While we were in Chicago, we were able to speak to Dr. M, one of the Sloan Docs and the thing that has resonated with us is that we are loosing Jake's window to ever get him to NED. While we have been told that it is unlikely here, he feels it may be possible there. What we are doing for him right now is purely palliative care and it's wrecking his marrow on new levels. It's all we have here in Houston though and we had to get him strong enough to move on to something harder. We've done that. It's served it's purpose as his weight is up and his energy and strength are the best they've been since diagnosis. Dr. M told us "it's time to go big or go home". That hit us in a way I can't put into words. The chemo he's been taking has offered us time to strengthen and stabilize him but the cancer lies in wait. Eventually it will grow immune to the drugs and explode, so it's time to hit it hard again.
Jake has no idea what's in store for us. We've discussed that we will travel a lot and that Daddy won't get to come visit at night but he doesn't really understand. So we'll (I will) try and look at it through little boy eyes as an adventure… the little Texan's heading to the big city… for some reason I keep thinking of the picante sauce commercial…"get a rope!" (Squirrel moment!)
Once we know the plan, things will move fast. We'll have to figure out travel and start communicating with the Ronald McDonald House to see if we can book lodging. It looks nice and it's a couple of blocks from the hospital. There will be much to do and it's likely that this will fall right around the first few weeks of school so please pray for our family and all the things that must fall into place. The first year of Jake's treatment, I spent an average of 25 days a month in the hospital with Jake, BUT I was still here in Houston. Daddy could visit, friends could come sit with us, brothers and sisters could spend the night, family could bring a home cooked meal. Things will be different.
While we wait, we'll do another round of the irino/temo chemo next week. It will be another five days of yuck. (I'll try not to post too many blue bags on FB). But I have to say that we have THE BEST PUKER this part of Texas! I may just jinx things but the boy does not miss. And if you are going to have a sick kid on a regular basis, this is one of the best gifts you can ask for. Jake's last week of chemo went much more smooth than the previous so we pray that it will go that way again. Even though he was sick, it was much more manageable.
On a side note…I find myself painting a lot right now. I'm NOT an artist by the way. I'm a spur-of-the-moment, see what kind of paint is in the cabinet, pick up a brush and paint a wall, a fence, whatever I can do that offers some mindless, physical outlet. When I have no control over my world, I have control over my wall color (grins). I've touched up walls, painted the walls behind our bookshelves, the trim in our computer room, the exterior fence (cuz the trash cans needed a nicer backdrop, duh – fence wasn't done when I took the pic BTW), and now I'm tackling Jake's play closet (yep, a closet). If you see me post that I'm in need of a project… you'll know what I mean.
As I've written this post I've mentioned a few things we would love for Jake's friends to join us in prayer over and here's another that would mean so much to us… There is the sweetest, most precious little girl that needs your prayer right now… Rorie. She's been fighting this monster for so long and is now hooked up to every machine imaginable. Please cover her family as they sit by her bedside and pray over their beautiful baby girl. Pray for her little body and the miracle that only God can bring.
Speaking of miracles… NY has been a really big decision for us and we are so thankful for the prayer and advice from so many of you. I really can't imagine this journey without all of the people that continue to storm Heaven on Jake's behalf. By all medical reasoning, he shouldn't be here. But he is! God hears you and he's not done with Jake. I don't know what the future holds but there is a journey that isn't just Jake's, it's everyone that knows and loves him. We have HOPE and miracles still happen. THANK YOU for always praying and loving him!
Last thing… Thank you to all that wear Jake's shirts. Ryan had a bowling night with his church group last week and three of the kids showed up in Jake shirts… we are so honored by their sweet hearts and it truly makes our hearts happy! THANK YOU!!!! Michelle Meeks did a new shirt for Jake and you can see it above on the top banner. It says "DON'T Keep Calm Make Cancer Extinct". The back has Jake's website. We've had a lot of people ask about them and they are on sale three more days at https://www.booster.com/jacobhickford2?share=6541406821489311 . The sales go toward Jake's medical fund.
And now a paint can beckons… must finish what I started. Wishing you a BLESSED and Happy Weekend Y'all! May you feel God's presence wherever you go!
"Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go," says the Lord. Joshua 1:9
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