Team Ashton Blasts Hepatoblastoma

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Raised by 53 people in 26 months
Ashton is an incredible, smart boy who loves playing video games, hanging with his friends, loves to learn, and loves people. Always upbeat, loves his music, and you often catch him singing and dancing with his headphones on. He has a heart of gold and won't let you do for him with other kids around, especially his little cousins, unless you are willing to do for them too.

Two weeks ago, life was normal. We had just moved to a new town, started meeting new people, and were planning for some summer fun. Shoulder pain that came and went away and a tummy ache with our little boy not being himself has flipped our world upside down.

Trying to lift Ashtons spirits, thinking he was down and out from moving, we went bowling and to the arcade. In the middle of bowling, he says "Momma I need to rest my tummy," and lays his head on the table at the bowling alley. I looked at his daddy and we agreed something is not right.  We need to go to the doctor.

At the ER they asked many questions and did a catscan. The nurse come back and asked to take Ashton for a ride and 1 person after another began walking in the room with my husband and I.  They don't waste any time, apologize and tell us tell us Ashton has Liver cancer and it has metastasized.  As they continued to talk, all I heard was voices, I don't even know what was said.  At some point while they were talking, I called the preacher's wife.  It was all I could think to do. We needed prayers and we needed them now!

From 2 p.m. to 7:30 p.m. on June 9th, 2017, we went from belly ache to flying on a plane to New Orleans Children's hospital. Tests and tests and more tests.

June 13th-Diagnosis of Hepatoblastoma Liver Cancer. It's the most common of the rare liver cancers which account for .5 to 2% of all childhood cancers.  Rarer though, is that Ashton is 9 and this form is usually diagnosed between 0 to 3 yrs old.  Even rarer is that we now have 2 children in the same small town that has been diagnosed with this 1 in a million cancer.

June 16th at 11 p.m - Started the Standard Chemo of Cisplantin, DOXOrubicin, Vincristine, and 5-Fluorouroracil then Neulasta.  Ashton received 2 days of chemo.  By day 4, Hemoglobin levels dropped drastically and kidney function decreased to a 1/3 of his normal function.  Ashton already has kidney damage from a childhood deformity of his ureters.   He had to undergo a blood transfusion on June 20th.  They plan to do 4 cycles, each lasting 3 wks, then a liver transplant and then two more cycles of chemo. This standard treatment is not ideal for him, as we have seen drastic effects from only 2 days.  We need to get to the experts! The leading experts are in Boston which would give us the most options and have the potential of an earlier transplant.  We are also looking at a Pittsburg's Children Hospital and St. Jude. 

The next year is going to be spent in and out of the hospital, which ever one it may be.  We are currently five hours away from our home.  Since we had just moved and my husband had changed jobs, we were in the 90 day waiting period to get insurance from his new employer.  At this moment I have no idea where we are going and how we are going to get there, I just know we will do whatever it takes and everything will work out. We have had many little angels and signs that God hears us, but we know we also need to do our part here and get Ashton where ever it is best for him to be.  We are on a wing and prayer right now.  I know God will help fix this, but I also realize we are just starting a journey that will be long and at times unpredictable. 

Any help would be greatly appreciated by our family, whether donation, keeping Ashton lifted in prayer, or just sharing Ashton's story. Im usually the one coordinating help for others, and not one to ask for help, but I have no option. We need any help we can get right now.  Ashton and his sister are our hearts and we need to find a way to fix this no matter how long or how far. We thank you all in advance and I promise to keep updating as much as possible.  I will also post updates on my on facebook page - Marissa Menendez Hammett.
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So our Liver Biopsy shows mild to moderate rejection. We will be on iv steroids for 5 days. After this settles out, we will do a scope to see if anything is going on in Ashton's stomach that may have contributed to our last month of no appetite and throwing up(which the throwing up may have contributed to us not getting all our anti-rejection meds which may have led to this rejection episode) . Usually you follow the rule that you don't redose if the vomit comes 30 minutes after giving meds but for us as we are learning with slow emptying of the stomach that does not work for us. They did start him on a med that helps get the stomach and gi tract moving. It seems to be working as he is eating a lil more daily. Now on this steroid for the rejection, he says he is hungry, but at the moment is just picking at stuff.
So about this diagnoses: Never in my life would I ever think I would be happy about a rejection diagnoses, but when your child has been fighting cancer and gone through all those chemo poisons and side effects, your perspective on these things gets a bit twisted. From what I see from other liver moms, these rejection scares usually pass quickly just with steroids and changing up dosage on the anti-rejection meds. So YEP, I totally prefer that option over Cancer coming back. The Afp (Tumor Marker Numbers) we watched double last week are also greatly affected by rejection and any injury to the liver, so we should see them go back down after this settles. Last week, we were all holding our breath, thinking we were seeing the first sign of relapse--Crazy as it seems, rejection is a relief. We are getting steroid doses every 6 hrs and are starting to see headway. The Liver dr. just left and said having rejection episodes is not that bad after a couple your body starts to realize hey they want me to keep this and calms down.
Ashton is not too happy about being here, but yesterday they had a lil camp he got to attend and he got to put a pie in the face of one of the child life specialists and HE LOVED IT. He is also back to his antics, wetting the nurses with syringes of water. Though it sucks to be here, He will find some entertainment!!!!!
Just keep us in your thoughts and prayers. Thank yall for your support all this time. We appreciate and love yall.
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Wow had no idea it had been so long since I updated this page. Sorry for that!! Life just doesn't stop. It is hard to believe that yesterday was the one year anniversary of Ashton being diagnosed with Hepatoblastoma. What a year it has been so many ups and downs, miracles and tears. Just a total roller coaster ride. One that I am not sure one ever really gets off of once you get on. The ride jerks you around, drops suddenly, brings you up to a summit, and then plummets you down to the ground. Right when you think the craziness is over, you get jerked once again, brought up to a nice peak with a great view and then again always holding your breath not knowing what to expect. But always looking up and Thanking God because no matter how many jerks, rises, and plummets things seem to work out.

How is Ashton?
All up until the last few weeks everything had been great. His Tumor Marker was staying put, his blood work was beautiful. Everything was looking up and we had plans to remove his port in June. Then a few Sundays ago, he got nauseated at church and everything has been a jumble. His appetite was lessening, so we tried an appetite stimulant that made him light headed and unsteady. Quit that in a hurry. A few days later, we go to the ER and get proof that he is FULL OF CRAP literally!!! So we flushed him out with Go lytely, things looked a lil better for a day or so then no appetite and nausea again. We did Go Lytely Round two, this time really thought he was cleared out and he felt better a day or so and then same nausea, some vomiting, and no appetite. Brainstorm with his liver team and we think maybe we need to get to Houston sooner and then decide it was because we stopped his acid reducer so don't rush to Houston, so we restarted it and a few days later no change. Down ten pounds that he could not afford to lose. Been back and forth trying to figure it out with his teams. We head back to Houston on the 18th and have lots of tests scheduled. But, we are going to head to UAB tomorrow to hydrate his butt and see if they can get us an earlier start in figuring out this eating issue. We are thinking it could be a flora issue that was caused back in April when we were on hard antibiotics for his toe infection or maybe a stomach and intestinal motility issue from meds. We are also praying that this eating issue and inflammation from being FULL OF CRAP is causing our bloodwork to go bad. Our platelets were half what they were last month and our Tumor Marker has doubled. Dehydration and inflammation both affect the Tumor Marker and we are praying that is why it has increased and that this is not the first sign of Relapse.
Ashton has moments were he feels great and moments, I think we need to run to the ER. You just never know what to expect.
Yesterday, he was lazy and no energy part the day and then in the pool like there is nothing wrong in the world. As he played in the pool last night, the breeze was blowing, the stars were out. All you hear is laughter and crickets, and I thought this is how life is suppose to be. Hanging with family, everyone happy and doing great, everything at peace. But in our reality it was only 30 minutes or maybe an hour and the rest of our night was Ashton feeling nauseated to the point he didnt want to take his meds, then his tummy hurt and he says he is taking deep breathes to make it go away, and after a bit finally agrees to take his nausea med and his important meds and goes to sleep.
Today, he was kinda of blah all day just watching movies, and not much energy or appetite and then like a light switch, run/waddling across kitchen and decides its time to go swimming. Gets in pool and is like a brand new kid for 45 minutes or so has few moments he needs to rest and is back at his gaming just fine as wine.

Tomorrow will try to jump start figuring this eating thing out, he always feels full and says he feels like he could never eat again and be just fine, but he really can't afford to lose any more weight. We have appointments set up the following week in Houston, and I foresee us being there till we figure this out.

Please keep Ashton in your prayers to figure this out quickly and for it to be easily fixable, and that our bloodwork and Tumor Markers being off are just from this eating and constipation hiccup we are having. Thank you all for your support, love, and prayers.
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Since the Thursday after Halloween, we have been in the hospital due to fever and having no ANC. Today makes the 7th day with no ANC, but today is also a good day as with with AFP(Tumor marker) being an 8 he is technically in remission. All his numbers are great and his liver is doing great. He is doing awesome and picking on his nurses. We cannot leave until his ANC trends up and he doesnt need blood products for 48 hrs. His platelets are low and we will get some tomorrow unless they go up over night. As long as his immune system cooperates we should be in Louisiana the week of Thanksgiving.
When we return to Houston that next week we will decide if we do any more chemo or if we start the medication Sorafenib. They don't really know what to do because noone knows how the cancer he has is going to react if there is any cancer cells lingering. He was originally diagnosed with Hepatoblastoma, however when they studied his liver after transplant they found his cancer had some characteristics of Hepatocellular the adult version of his cancer that doesnt respond well to chemo. His margins where positive after transplant so we know cancer cells were left, we just don't know if they are going to respond like Hepatoblastoma or Hepatocellular. We assume because of the AFP going down that it will act like Hepatoblastoma, but the trend down can also be from removing so much of the tumor that produces the AFP. We truly wont know till we stop all treatment. The medication that they are also considering is one they give to the Hepatocellular patients to extend life. There have been studies were it has put people into remission so if he does have cells that lingers that may take care of them.
At this point we could be cured forever, which I believe we are but its still scary knowing the doctors dont even know. They say if we would be at any other hospital we would think we had the simple version of Hepatoblastoma because they have just started digging deeper into its subtypes so we wouldnt be worried about this acting like Hepatocellular.
I truly think they will decide not to do any more chemo because of how sensitive Ashton's immune system has been to it. The doctor said by day 2 of this chemo his white blood cells plummetted and he is concerned about shutting his immune system down completely on a regimen he does not even know if it is doing anything for him. We already have sluggish bone marrow that takes forever to start producing platelets.
I dont know too much about this other medication Sorafenib, but I am reading all I can.
I know I have said it before but I do not think God has given us the miracles we have already had to take Ashton from us. I believe God has much work for him. We have seen 1 child get 8 offers and still not have transplant where as Ashton had the most flawless transition into transplant and healing they have seen. On the list with an offer within 24 hrs and in transplant within 10 hrs from the offer. Truly within two days you only knew he had a transplant because of the huge scar on his stomach. he never missed a beat. The only thing he fights to recover from is the toll the chemo takes on his immune system.
He can not wait to see everyone Thanksgiving week. Thank you all for your continued support and prayers.
I have faith that we are almost done. But I do see many lab tests and biopsies that will have my heart in my throat for years to come. I hope the fear does not last forever, but I am scared to stop treatment, but scared to continue it too. I just pray that God has Ashton finish strong as His lil miracle and lets him have a long cancer free life ahead of him to tell his story.
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So I think this is round 3 on no chemo because of platelets. We will try again Monday. The testing of his margins of where they cut to remove his old liver came back positive meaning some cancer cells were left in his body which we knew was a possibility. More pathology came back putting his diagnosis as Hb-NOS which is a mix of Heptoblastoma(can be cured) n heptacellular (which can be resistant to chemo). Of course knowing 90% of his tumor was still alive after 3 rounds of chemo this is not a surprise. If we were at any other facility, they would still say HB because this mixed version research is so new and they do not know much about it. Will it cure like HB or will the HC traits show more strength no one knows. Our team reached out to MD Anderson for an opinion, and they said our planned new chemo regime is a good option.
We meet with a genetic oncologist Wed next week to talk more about Ashtons mutated genes especially those related to Fanconi anemia n Brca2. They are doing a broken chromosome test to help explain his platelets lagging. They are concerned something genetic keeps his body from repairing the way it should. The plan is more chemo but consideration will be taken towards his toxicities and the future of his bone marrow. The antirejection meds are taxing his kidneys so we are changing from prograf to rapamune. Good thing about Rapamune is it is also anticancer so it will help with any left over demons we have. Regardless of all the negative his AFP is 43. Two digits! I am grateful for the thoroughness of all the drs, but our AFP is 43 whether margins were positive or not. God did not give this baby a liver in the blink of an eye and heal that so perfectly to take him away. He has mutated genes that say he should have seizures n cognitive decline by age 3 but he is one of 30 something that have no signs or symptoms. He was already a miracle. The length of time needed for his blood to recover from chemo keeps getting longer,but Physically n mentally he is doing great. I'm thinking being home for Christmas now may not happen, it will be a bitter sweet Christmas where ever we are as long as we are all together and getting healthy. ASHTON WILL DEFY ODDS, HE ALREADY HAS BEEN. AND GOD WILL BRING US THROUGH TO A HAPPY HEALTHY LONG LIFE. Keep Praying it is what is getting us through with God's Grace. Ashton will win this. Thank you all.
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Raised by 53 people in 26 months
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