Author: Mardon Hickford

~~"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

 

 

 Another scan week is behind us and before I get into all of that I have to say a BIG THANK YOU to our church family, Trinity Lutheran Church. While Jake was at the hospital this week, our church's VBS was in full swing and my friend Gennie sent this picture of her group praying – they were lifting him in prayer. I can't think of anything more precious and touching than children praying for children and we receive notes regularly that your children are praying for Jake. This has moved me to tears on more occasions than I can count and this was no exception. There were a few sad mornings for Jakey knowing that he couldn't be part of VBS while his brother and sisters headed out but I was able to pop in and purchase a t-shirt yesterday so he could feel included and that brought a BIG smile. Each grade had a different color and he was elated that his was blue (big brother Ryan's was neon pink – you get my drift!)

As for scan results, I posted most of this on FB. I've added a little more detail here but there is a line below if you would like to skip past this part. The good news… Jake's lungs and liver are stable. In fact, it appears that one of the large spots in the liver is trying to dissolve. And there is now one good size spot in the lungs but the others are barely detectable. This is really positive in comparison to a few months ago when there were too many to count. There is nothing new in the bones, but there is question over an area in the leg… whether it's separating and spreading or if it's attempting to dissolve and just breaking into two areas. We won't know until the next round of scans. For the bad news… his marrow is showing more damage. We feel it best to back off and give some extra time before this next cycle to see if this helps relieve some stress on his bone marrow. The fear is that too much time in between treatment may cause the chemotherapy to be much less effective. There is no cut and dry answer here as we are not on any form of NB protocol, he's off the map as to how and when to dose him. Due to his platelets being so beaten down, we are bumping them each week in order to get him to a "mark" to administer chemo and that mark is not even half of where his counts should be to do these treatments. I'll use this as an educational moment… to give you an idea, a normal platelet level is 150K-450K for you and me. To receive chemo he should be >75K, but he is usually in the low 30K's… that is WITH the bumps from transfusions. We've learned that this is causing elevated MCV levels which can indicate early signs of myelodysplastic syndrome, which is a type of cancer in which the bone marrow does not make enough healthy blood cells and there are abnormal (blast) cells in the blood and/or bone marrow. This can be a precursor to AML, Acute Myeloid Leukemia. One of the statistics that you hear in the pediatric cancer world is that many children will beat their cancer, only to die from the treatments… chemo-induced cancers are the big fear and not curable. The very drugs we give to cure our babies, kill them in the end. Some children don't ever beat their first cancer before the next one manifests and this is their fear for Jake right now. (This is why we need so much more AWARENESS, research and milder treatments FOR children!) Because of Jake's history and marrow damage, he is a prime candidate for this.  We knew this was a possibility, but when there is nothing to draw from, you take what's on the table. Still, no matter how you've been warned, it stings. For now, we'll take this extra week to watch his CBCs, rest and juice him up on transfusions, and PRAY that his MCV levels drop while we try to decipher what we've learned.

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With all that said, I don't want to end on a low note… I'd love to share a few things… happy, normal things. I'm often asked if Jake is confined to bed or lives at the hospital. And as much as I say "we live there", we really don't. He's spends several days a week at the hospital and we go back and forth between Main Campus (Med Center TCH) and West Campus (Katy TCH) but he feels pretty good most days. Because his immune system is so jeopardized, he's very isolated, but he's all boy and full of life. Right now he's learning the calendar (days of the week/month) and on his own, he started adding smile or frown faces to certain days. You can guess what the frowns are for and it's helping him understand that we take each day as it comes and the hard days do pass. He would get up every day and ask, "do I have the hospital today?" Now he can head to his calendar to see the plan and prepare for those frowny days and enjoy his HAPPY face days.

Speaking of happy, we had a few hours in between scans one day this week, so we headed to the museum when it was early and quiet to say hello to the dinos. It's always funny to see Jake run to his favorites first and then venture to things that catch his attention. This trip, he wanted to stop and actually read (have me read) a few that he's never paid much attention too and he stopped for a long while at the wall of homo sapiens. We didn't read much there, he just walked along the wall taking it all in. I can see there is a lesson coming soon. It made me think of Jake's love of Bigfoot so I went searching for this video from a few months ago and when I found it last night, I  watched it over and over and thought I'd share. We watch a LOT of Finding Bigfoot episodes and this is Jake's version.
 

[youtube=https://www.youtube.com/watch?v=nB_K1_eShpw]

I just LOVE this! At the time, I didn't know he what he was doing, just thought he was playing with my phone. Nope!  He was directing his own Bigfoot clip.I'll close soon but will first ask for prayer over all that we have learned this week and the decisions we have made for Jake's next six weeks of treatment. It's been a hard couple of weeks for our cancer family. We've seen two friends relapse, two lose their life to this disease, and another family heard those awful words of diagnosis. Please PRAY for all of these families! We head to Chicago mid-July with Jake and pray that we'll learn something new that may be available to him. The past couple of weeks were not easy for him as this last round of chemo threw him for a loop in a way we hadn't seen in quite a while so we welcome this week's rest and hope it will allow him to go into the next round swinging a little stronger, ready to jump that plane for Chicago.


 

I'll sign off with this picture… this is our friend Fernando. He runs the golf carts at West Campus and has become a very special friend. He knows our schedule, watches for our truck to pull in each day, then drives up before we even open the doors. For most TCH visitors, he kindly picks them up and drives to the front doors but for Jakey, he makes an extra big circle of the parking lot, taking the corners super fast while Jake squeals with his hands in the air. Fernando has become part of our cancer family, he's a very good man, he prays for Jake, and at the end of many hard days, he's been there to lift Jake's spirits. Along with your prayers, I believe that people like Fernando keep our little fighter swinging back as the punches come, and we are BLESSED by the love and example of so many kind and gentle friends.
 

Be an example to the believers in word, in conduct, in love, in spirit, in faith, in purity. 1 Timothy 4:12