Yesterday 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 right 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 hospitalization, 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!) Grins but serious!!! 

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

~~"Trust in the Lord with all your heart; do not depend on your own understanding.
 Seek His will in all you do, and He will show you which path to take." -Proverbs 3:5-6

This week we learned more of the plan ahead with more twists and turns as NY wants Jake to undergo HD-ICE with rescue prior to the trial. This will be a harsh 3-4 weeks of awful sickness and pain, and this isn't even the trial! It's stirred so many emotions and my mind is circling to find peace in this. There is a verse in a song that says… "I'm done fighting, I'm finally letting go". I have a necklace that says, "Let GO and Let God" and everyday at noon the Lord's Prayer comes on KSBJ reminding me, "Your will be done", yet those are things I have struggled with since the beginning of this journey and if I'm completely honest, I have not completely let go. I want to but I can't. He's my son. God gave him to us and I'm so afraid that God's will is different from mine. Many people have told me that I must find peace with this and give him to God and in so many ways I have handed him over. Really! But those friends, sweet and loving, have not walked this road. They have not begged for their child's life and seen him suffer to this level. I'm so overwhelmed and tortured at the lack of options for Jake and what we are about to do him. I'm sad that this is the life that has been chosen for him at this time. I'm tired and wearing thin.

The ICE treatment plan that NY is requiring is different than the ICE that TCH offers (TCH's plan is a much lesser dosage, therefore less toxic). I'm going to give a lot of information that will hopefully come full circle… most of the hospitals around the country operate under COG criteria (Children's Oncology Group). But there are a few that don't, and Sloan Kettering is one of them. They operate under their own protocols that are very different from COG hospitals. A COG hospital must comply with thier protocols without deviation per FDA and NCI (National Cancer Institute) regulations. Jake doesn't qualify for TCH's ICE due to his platelets. Even though it's a lesser dosage, the rules are set and they won't administer to him. While we have bent the rules on the current chemo combo that Jake is taking, it isn't a written COG protocol, it's similar to a compassionate use of treatment without the legalities and permissions of true "Compassionate Use". COG protocols are not bent… again, they are legally approved treatments. The way Sloan's ICE protocol is written, Jake meets the criteria WITH a rescue. This treatment is categorized as "salvage therapy" (nice term, eh?) for refractory/relapse patients. Because most of the kids needing this treatment at their institution have chemo induced marrow damage, they allow platelet criteria to be quite a bit lower. Now as I stated above, the the key component is WITH RESCUE. If you remember, we harvested Jake's stem cells in Dec 2012. This treatment requires that his own cells be re-introduced in hopes to help his marrow recover after the ICE. The scary thing is that we attempted this after the MIBG trial at Cook's Childrens Hospital and didn't feel that is was much of a benefit. Now here's the kink… Sloan Kettering has requested our home hospital administer their (Sloan's) ICE regimen so that Jake can be here and keep travel at a minimum before we tackle the trial in NY. It would eliminate a whole month (out of months) of treatment out of state. This is great news for us, EXCEPT… TCH doesn't offer this… remember COG hospital. COG hospitals don't do non-COG treatments. They have been asked in the past when other families were trying to head to Sloan for this same thing and have had to decline. However, they are reconsidering due to the repeat requests. The bigger kink… TCH can't just administer Sloan's ICE. They will have to write a protocol that mirrors Sloan's and that means lots of red tape, meetings, legalities, FDA approval, TIME, yada yada. It's quite involved but Doc H feels that there is a good chance that it may be a go because it will help more kids get to the trials they need. (Cool thing… this may come about because of Jake's need but it will help all those kids that come behind him). Something we learned in Chicago is that there is a growing community of kids like Jake that have never hit NED. Their marrow is devastated, their options are few, yet they are "healthy" cancer kids in need of treatment. They're being left behind because research isn't keeping up and they're left for the cancer to take them over when they currently have excellent quality of life. 

This week we also learned what Sloan's ICE treatment means and it's WICKED. Jake will be so sick. For so long. He'll have horrible mouth sores, he'll be on lipids and TPN, he'll loose his hair again, fever, pain, morphine drip, nausea, possible infections, lots of lines, and be on the BMT floor… for weeks. But if we can do this here, this is less that we do in NY. I think I've been in denial of what this all meant and it's hitting me. We've had a great summer and he's felt so good. He's at a really good place and in our minds, we felt we were heading to NY as healthy as possible. In reality, we will head there after he's been knocked to the ground.  We knew the 3F8 part of the trial was difficult but this adds a whole new level of terror. 

I haven't even begun to tell you about the trial and I'll leave those details for another post but it is 3F8 with NK Donor Cells and Chemo. The NK cells this time are NOT his own. They are donor cells. Henry and Meghan will be tested first. These cells are different in the sense that they have to be familial but most UNLIKE his own. Please pray that one of them works, or is NOT a close match, actually. If they don't work, the other siblings will be tested. Surely we have enough kids that ONE will fill the need.

As for Jake, he finished his week of chemo and although there was a lot of nausea, he came out like a champ! He even got a haircut this week! It was the curls again that pushed him over the edge. It drives him nuts when people comment that they love his curls (cuz boys don't have curls, ya know?!) On one hand it makes me sad to know that he's going to loose his hair again and on the other, I love kissing his bald head. And something that I've come to realize is that when he was bald people kept their distance a little more. Not that we want people to steer clear but strangers don't tend to touch a bald kid. The hair makes him look well. And although he is doing better than he has in so long, he isn't well and we are always on gaurd. Last week, in the hospital elevator, a lady started running her fingers through his hair, then she pulled a chip out of her Lays bag to share with him. You can imagine me standing there crawling the walls to get out. That doesn't happen with bald kids! He kindly took a step back and said "No thanks."

So this is where we are… we have some new information but not much. Each day brings something new but we find ourselves in limbo once again. We know where we are heading eventually, but we're waiting for the road map. In the beginning of Jake's diagnosis we were told that, "the best you can do is take one day at a time"… we had no idea of the truth in that statement.

And so we brace ourselves for the journey ahead. We look to you to stand in and pray for us as we are finding it hard right now to wrap our minds around all of this. Even in all of these unknowns we have HOPE. We wouldn't do this otherwise. As always, I'd love to ask you to pray for some friends… Patrick and Prestun are Neuroblastoma fighters and Raelyn fights Rhabdomyosarcoma. They are in need of your prayers right now in a BIG way. And don't forget… September is Childhood Cancer Awareness Month. Please paint YOUR world GOLD for Jake and all of these kids. They need YOU! And we appreciate you so much!!!

There's hope in front of me
There's a light, I still see it
There's a hand still holding me
Even when I don't believe it
I may be down but I'm not dead
There's better days still up ahead
Even after all I've seen, there's hope in front of me
–Hope In Front of Me by Danny Gokey

Today, Jake's journey changed course again. The decision has been made to head to NY.

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