23
23
5

Ashton Blasts Hepatoblastoma Round 2

$1,404 of $10,000 goal

Raised by 23 people in 3 months
Created February 7, 2019
Our sweet Ashton was diagnosed in June 2017 with Transitional Hepatoblastoma a rare liver cancer. He is 11 yrs. old and battling cancer for the second time.

Hepatablastoma is 1% of all kids cancer but the blend Ashton has is actually about .20% not even a whole half a percent of kids cancer. He is absolutely one of a kind so there is no surprise, he would have something that would puzzle everyone.

Ashton is an awesome kid! He loves his Fortnite and his friends.  He loves science and wants to be a doctor and what an awesome doctor he would be with all the experience he has gained in the last couple of years. He will bust out in song and dance in front of anyone anywhere. His favorite person to pick on is his dad.

Ashton spent the second half of 2017 getting chemo, a life saving transplant, and then  more chemo. He did an adult chemo pill the beginning of 2018, then had liver rejection and finally the last part of 2018 he was able to be a kid and enjoy life a little bit. We knew there was a positive area of cancer on his inferior vena cava after transplant, but we thought the chemo we did after transplant had taken care of it. Unfortunately last month we found out its there and a few other spots.

He had Surgery on Feb. 27th,2019 for these spots and we found more cancer than anyone anticipated. Our oncologists are going above and beyond looking for help on Ashton's puzzle. IV Chemo is not an option, so our docs have really reached out looking for new options. The plan is to start a pretty new adult liver cancer med as soon as things are straight with insurance. This med cost $18k a month, and we are still waiting to hear what insurance is covering.  The docs can't offer a good prognosis because this is all new territory, but we have faith Ashton will keep overcoming because God is walking with us.

Financially, things are rough! We are about to hit two years since this all started. We live in North Mississippi and had just moved from Belle Chasse, La. the month before Ashton was diagnosed.  Ashton is mainly treated at Texas Children's where he had his liver transplant so we have to travel there often.  Our lives have always needed both me and my husband to work and that just has not been possible. With 4 surgeries, 2 liver biopsies, doctors appts. and labs at some points twice a week, 3 hospitals stays, and 6 trips to Houston just since April 2018 all while recovering from fighting, I have no idea what to expect while we are actively fighting. From August till Jan., I was able to help out a little substituting at his school, but I won't be able to sub again till Ashton can go back and that all depends on the side effects he does or does not have to the adult liver med.

 Finances are definitely a balancing act of trying to keep Ashton as happy as possible, having money for all the medical expenses and travel, and just paying the bills that keep a roof over our heads and lights on. Truly, the credit cards and everything else we maxed out the last two years, I throw them in the trash as soon as I see them. I just really can't do anything about them at the moment. Right now Tristan's car is broke and our outside AC unit is broke so sometimes its seems more like an Avalanche than a balance. Everything always seems to work out thanks to everyone who has already helped, but there is so much going on right now that the stress is really working on me and Daniel both. 

Please Share at the least and get the word out! Anything you can do $5, $10 it all helps!

Thank you all so much for the prayers, shares, and any help you can give.There are just no words for what it really means to us.
+ Read More
Being home in New Hope, Ms. these last few days has been great. Had no idea when we moved here from Belle Chasse, La. a month before Ashton was diagnosed in 2017, how much of a home this place was truly going to be for us. At one point I had wondered why He let us move away and its gets more obvious as time goes on. God surrounded us with some pretty amazing people from Daniel's work, our neighbors, our church, our school, our doctor's offices, our ER staff, MAW, and our many new friends/family. We love and miss our BC people, just don't think life with all the hustle and bustle down there would be as good for Ashton as being here. I think down there our whole life would be sitting in waiting rooms.
This next week, we will try to get fit in with Ashton's adult oncologist here to talk about the med he will be going on and hear the docs experience with his adult patients on it. I don't think we will start it till the following week even if I like all the answers. Ashton has a huge surprise coming this next weekend and I want him to be able to enjoy it. So this week, we will rest up, recover, and just enjoy life. The following week we will get back to the cancer fighting business. Which all works out because I am also still waiting for confirmation of what insurance is going to pay for his meds because they cost $18k a month. I also have questions I am waiting on answers from Texas about. Ashton is on a med now that affects the QT interval of the heart(the interval of the electrical pulse of the heart) and the new med for cancer does too so I want his heart checked to see if the lower dose of the previous med has resolved his QT issue or can we get off of that med before we start this chemo pill.
Ashton is feeling good. No need for pain meds anymore and we skipped his Gabapentin this morning to see if we can go ahead and get off that too. Ashton has missed the whole 3rd 9 weeks but he got to talk to his friends and teachers on the phone yesterday and loved that. He wants to be back in school so bad, but we have to get pass flu season and see how his side effects from this med are first.
Thank you all for the prayers and support. In June it will be two years in this fight. It has been a struggle mentally, physically and financially. To make it to the point we are now without losing anything and still being able to give Ashton pretty much everything he wants has been a blessing from God and all of you who have helped us along the way. Thank you
+ Read More
They let us out last night so we can see how well his pain is managed. So far so good, he says his pain is a 4, I think it is a little less than that so I have only been giving him half the dose. We see his surgeon in the morning so hopefully he releases us to go home. The original plan was for us to stay a week and then follow up with the surgeon, but they don't want us to fly so soon after taking 9 spots out of his lung and resecting his diaphragm. Will know more tomorrow, He is feeling pretty good. But you can tell he has some stressful thoughts on his mind. One minute he is telling us if something happens to him, let him go and the next take him to the hospital. One minute he is on the phone with his buddy Brady and you would think he never heard the word cancer and the next he is crabby and snappy. I know the range of emotions, I go through with this. I can only imagine all of his.
He told his doc the other day that he was thinking about being a doctor and he would be a great doctor! The look on his docs face and the emotion I saw, I know he wants to find a way to make that possible. It is such a hard situation because there is not much to go on and what is comparable to his cancer is not positive stuff. Even with finding more cancer than we thought the plan is still to start the adult cancer med Levantinib and see how that goes. His doctor has a trial that just started for his cancer with killer Tcells. Ashton doesn't qualify for multiple reasons, however there are ways around it and the tcells are weighing heavy on me right now. I'll post more about them later. Keep the prayers rolling. Thank yall for your support and love. We appreciate it more than words.
+ Read More
Surgery day and the day after were kind of rough for my baby boy. Surgery started at 730 and we didn't leave recovery till 730 that night. He is still on a epidural, we had to stop the other pains meds because of an allergic reaction. Today He is feeling pretty good. They are going to come back for 2pm and do another chest xray. He may get the chest tube out depending on the xray and then should get the epidural out I assume. If that all happens today, they may let us out tomorrow and follow up Monday. If that happens this will be a record admit for us!!!! They ended up being able to do everything from small incisions instead of opening up his transplant incision like we had talked about the day of surgery so healing will be much quicker. They took 9 spots out of the right lung, a spot off his chest wall, the mass off of the diaphragm that was touching the Vena Cava and burned a lil just in case. Since they could get to the mass from the chest cavity, they skipped the hernia repair so give a break from having two cavities open.
We should know some biopsy results next week, but as of now they plan to start him on an adult targeted med for liver cancer called Levantinib. They don't want us to fly since they took 9 spots out of the lung, so Daniel will stay an extra day or two and we will drive back with him. Our adult oncologist in Ms. will help monitor Ashton's bloodwork and side effects as we start the new med. Our Texas Children's Oncologist thinks we have a solid plan, but this is all new ground. Beings Ashton's age with this blend of Cancer, it accounts for maybe .20% not even a half of a percent, there is not much to compare it too. Everything we have to talk about right now of what this cancer will do is just speculation. We have a plan and many prayers and we will work from there.
+ Read More
So we made it to Houston yesterday after hanging out in Belle Chasse for the weekend. We met with the surgeon yesterday, and he seemed very hopeful that we could get all the cancer out. If the Green Dye that was injected yesterday lights up any new spots, he will take those out too. If it lights all kinds of stuff up, he will take out what makes sense. We won't know what is going on with the Vena Cava area till they are in. Going in the surgeon feels, there may be tumor touching it not infiltrating it which is a huge deal.
You can tell Ashton is getting nervous because he is getting moodier and moodier. We did labs this morning, well this afternoon after waiting 3 hrs. Partly our fault because we were trying to get labs drawn through his port which was already accessed rather than going down to the surgeons lab and getting another stick. It finally worked out our way, but we would have been done 2 hours earlier had we just gone to the lab.
We go in for pre-op at 6am. They say we will be there up to a week and need to stay in town for at least a week after if surgery goes as planned right now. They will remove the spot in the lung and leave in a titanium staple. They will remove a spot on his chest wall. Then they will remove the area smushed in between the diaphragm and liver probably taking a sliver of liver and diaphragm and fixing an abdominal hernia.
We still don't know what we will do for prevention after surgery to keep this cancer away. Not much came out of the International Call that wasn't already talked about as an option. There are 3 meds used for adults that are now in trials for kids that are options. And mention of using Thalidomide, an old med for sedation that caused all kinds of birth defects way back when. But the same property that caused the birth defects actually stops blood vessel development in tumors. Crazy, but true.
Please keep Ashton and the surgeons lifted in prayer for 100% resection of all this cancer and an easy recovery for my boy. Ashton is tough, and I have tried to get him to talk to me about everything the surgeon said yesterday, but he is in escape mode on Xbox.
We so appreciate all the love, prayers, and support. It is so needed. Daniel was rained out of work last week, and missing this week for surgery so any help is greatly needed right now. If you don't want to give through go fundme, you can contribute through
paypal. We thank everyone that has already helped so much, we could not make it without you. If you can't help please share and pray. Thank you all so much. I will update again when we get an update from the surgeon tomorrow morning.
+ Read More
Read a Previous Update

$1,404 of $10,000 goal

Raised by 23 people in 3 months
Created February 7, 2019
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
$100
Rachel Chrestman
1 month ago
JC
$100
Joyce Chain
2 months ago
$39
Emily Bourgeois
2 months ago
BK
$50
Beth Kelly
2 months ago
$100
Anonymous
2 months ago
$50
Anonymous
2 months ago
HF
$100
Hamka Family
2 months ago
AM
$50
Amy Morrow
2 months ago
RA
$100
Regina Borden Arenales
2 months ago
LR
$40
Lynda Register
2 months ago
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.