January 22

I didn’t want to jinx it but today is day 2 with 0 blasts. Blast in his blood often indicate either leukemia or his bone marrow is recovering. We know his bone marrow isn’t recovering because he’s still getting chemo (today is his last day). Saturday his blood had 5% blast, Sunday it had 9% and Monday 15% blasts so naturally I start thinking the worst… yesterday he had 0 blasts but often blood tests come back wrong so I didn’t post because I didn’t want to jinx it, BUT today he had 0 blasts again!!! Keep all the prayers coming!!!

January 20

Day 13…. Ashton is feeling better and has 3 more days of chemo and then we wait and PRAY the chemo destroys those stubborn leukemia cells.

This has been the longest 10 months of our lives. Pray, pray, pray, that the blasts in his blood start to go down which shows the tumors are starting to die.

January 19

Day 12… Ashton is in a great mood. He’s playful, laughing, talking and he ate some chicken parm, blueberries and puffs.. that’s more than he’s eaten in a week.

He still can’t sit up without screaming in pain, but his team thinks it could be a muscle spasm… I’m not really sure but I’ll go with it. The x-ray showed he didn’t have any fractures. We gave him some baby muscle relaxers so we are going to wait it to kick in and then see if he can sit. Prayers for Ashton!!

January 18

Day 11…. Ashton appears to be in good spirits. He was throwing the ball, talking a lot and even eating chili, however he cannot sit up.

He’s been through a lot and I’m just praying it’s not sh*t getting worse. He got X-rays done of his hips and lower back to see if he has a fracture of some sort. Part of me hope he does have a fracture so we have a reason instead of the scary unknown.

Please pray for our boy! My mommy heart can’t take much more of watching my boy suffer.

January 17

Day 10… well last night was another day of tests and bs. He started zoning out like he was daydreaming. He continued to do it most of the day so when I brought it up to his nurse, she brought it up to the NP.

They came and did a neurological test. He did very well during it but I explained to the NP that nothing that appears to be little is actually little, it’s always something bigger. They agreed and wanted him to do a head CT.

So all night we did a head CT which showed a small brain bleed that explained him staring off into space. After that they hooked him up with a EEG to make sure he hasn’t having seizures. Then another CT scan at 230a to make sure it didn’t get worse.

January 16
7am

GOOD NEWS!!!!!

Ashton is FINALLY out of the ICU and back in Oncology!!! He is off of oxygen and his pain meds… maybe the chemo is starting to work. Thank all of you who have been keeping Ashton in your prayers.

January 14
10am

Day 7…. Really just sad. Day 2 in the ICU. Breathing is still crappy and he still has high blood pressures which now they are going to him on blood pressure medication.

January 13 4:30pm

Ashton is being transferred to the ICU so they can better monitor him.

January 13

Day 6… Ashton did okay with his first dose to cytarabine although he spiked a high fever, which is expected with cytarabine, but no other symptoms so far. It’s still early. My baby sleeps all day which I’m learning to deal with as long as he’s not in pain. He’s still losing some fluid which is great so he’s not so bloated. Now if we can figure out the high blood pressure’s which we are working with a kidney team.

January 12

Day 5… Ashton has had a ROUGH week and we believe part it is because the tumor is pressing on his blood vessels which is causing his blood pressure to be to high and making it harder for him to breathe.

Sense we believe the tumor is growing, my wonderful NPs figured away to start his high dose cytarabine at midnight tonight instead of 8pm tomorrow night. We believe he needs it asap to hope shrink the tumor. Please pray for our baby as he enters the next phase of his treatment. Please pray that he doesn’t get to sick from it!

January 11

Day 4…. Not going great. The mystery of him being bloated is still unknown. He’s had two ultrasounds, two X-rays, two CT scans, a TON of lab work and everything keeps coming back normal. The only thing left is there could be possible little tears in his intestines, which there isn’t a test for, so the only thing we can do is have him not eat or drink ANYTHING for a few days to see if it helps. I told them a would give them a few days but he’s not going to be NPO forever.

January 10

Day 3 of chemo. The chemo doesn’t seem to be the problem as of yet. His legs, feet and stomach are still swollen. No one knows why his stomach is still so extended when he’s no longer constipated. We have had X-rays and ultrasounds the last 2 days and there seems to be no answer. We are about to head to CT hoping to see something. Hopefully there’s answers soon.

On a different note we got are new chair and love it. Thank you so much magic for Maddie for buying it for me and thank you to my friends for delivering to me!

January 9

Yesterday was day 1 for chemo. Boston Children’s made an individual plan just for Ashton. Ashton is super stubborn. He can be such an asshole so I believe that his leukemia cells are just like him, stubborn little sh!ts.

I was talking to his primary oncologist a couple days ago and I explained how it doesn’t make sense because the chemo was working because his breathing got better and he was standing again. She said she didn’t know if it started to kill the leukemia cells but then they began to fight back and started spreading like wildfire.

Then it occurred to me, that makes perfect sense. Ashton is stubborn and so is his leukemia so we can’t have pussy sh!t chemo, we need the good sh!t, as Chris would say.

So yesterday Ashton started a chemo regimen that was actually from St. Jude where it will open up his leukemia cells and make them more vulnerable so on day 6, 7, 12, 13 when we blast his body with the hardest chemo they have, we will kick leukemias a$$. My boys got this!

This is the most relaxed he’s been in 2 days! Just needs his momma to rub his head and snuggle him.

January 9

January 8th was the WORSE night at Boston Children’s Hospital in the 6.5 months that I’ve been here.

Ashton’s swelling has gone down slightly. He FINALLY has had two bowel movements. He’s been constipated for 4 days. He is in a TON of pain because of his stomach, from being bloated where he barely can move and from his leukemia. He gets these raspy short breaths because of the pain. When people leave him the f*ck alone, then he will relax, his breathing will go to normal, and he will fall asleep. Well because of the amount of pain he’s been in and him being so swollen, I couldn’t let him sleep that uncomfortable in his crib, so Chris and I have been trading on whose sleeping in the most uncomfortable chair.

Tell me why ALL night they needed ultrasounds, X-rays, labs drawn 6 times, vitals taken every hour, the NPs coming in 5 times to check on him and to listen to him, the ICU nurse coming to give a consultation on whether we should go to the ICU, and then say well his breathing, blood pressure and heart rate are f*cked up! Yes because you mother f*ckers wont leave my baby alone. After I spoke STERNLY to the nurse, NPs, xray tech and the ICU nurse, they went out to the hall to discuss whether Ashton should go to the ICU, as Chris kindly shut the door behind them and slid a sign under the door that said “BABY IS SLEEPING”.

January 8

Baby boy is SWOLLEN from head to toe. The doctors think it’s from his procedure and it’s just fluid built up from laying down during his procedures and he’s still constipated.

He got an xray of his stomach, took blood cultures and gave him more meds that should release the fluid and help his go to the bathroom. Everything hurts him. He better feel better fast until then I’m not moving.

January 6

Ashton is getting his bone marrow biopsy tomorrow and a biopsy of his shoulder. He is going to start chemotherapy tomorrow or Wednesday. This is going to be 6 weeks of hell. The hardest chemo they have. This is Ashton's last shot! Please everyone pray. God has to heal our baby boy!

January 5

MRI results say that his tumors have grown since starting this clinical trial. It clearly did not work. His left shoulder is having some pain so the MRI says they “think” it’s more leukemia in a new spot. I don’t like that response so I am making them do a biopsy of his shoulder tomorrow to confirm it’s leukemia and not a bone infection that we are missing.

January 4

I just received the results of the CT scans. Not only did his tumors not shrink but they actually grew. The chemo and the clinical trial did not work. I feel like I’m slowly dying inside.

Because he has been having fevers for 5 days which is a sign of cancer and infection, he is going to get a MRI tomorrow to see if he might possibly have an infection in his bones along with the cancer. On Monday they are going to find a new chemo regiment. I told the doctors they need to figure it out because dying is not an option. They said it is not good but they have a lot of things in their pockets so they will come up with a new plan.

​December 8

We have been out of Bostons Children Hospital for 4 months and 4 days and now we are back.

We just discovered while checking his lungs, that he now has tumors by his lungs and in his hips which has been my concern bc he stopped trying to walk.

His leukemia AML came back. Please send all the prayers for Ashton and our family because I have no idea how we are going to go through this all again. It seems impossible.

​December 6

So today Ashton had his last follow up with his pulmonologist in Boston, or so we thought….

After discussing my concerns with his doctor she decided to do a chest xray. On my way home from Boston, his doctor calls me and says she sees something on the xray that he needs to be admitted for. She said it looks like the tissue by his lung or in his lung has an infection. She said he had to be admitted for further testing and so he can be treated immediately.

She worked with admission and we are going back to Boston Children’s tomorrow to be admitted for who knows how long… I need all the prayers that this is a quick trip because something tells me it won’t be because it never is….

I just want my baby to start feeling better….

October 30

All is perfect with baby Ash! Now on our way home to sit in Boston traffic… so grateful my little man is healthy.

August 28

1st month check up is good to go! Gained 1.2lbs in 2 weeks.

August 6

We are soooo grateful for everyone we have in our lives. If it wasn’t for our friends, family, the AMAZING nurses and everyone who prayed for our baby boy, I don’t know if I would have made it!

This was the worst, most challenging thing our family has ever gone through and I’m happy to say WE MADE IT! Our little guy is a fighter. We weren’t suppose to be done with treatment until almost September but he had other plans. His little body kicked cancers ass so fast that the doctors/ NPs were in disbelief.

Thank you everyone from the bottom of our heart!

The first night home was a success although I ended up sleeping in Ashton room. I’m just grateful to be home!

August 2

No cancer! No fungal infection! We are going HOME!!!!!!

August 1

The biopsy they took on his knee could be nothing, could be a fungal infection or could be cancer. Please pray for no cancer!!!!!

July 14

After nearly 4 months of lovenox shots (similar to blood thinners) Ashton finally finished his LAST lovenox shot today! Ashton has been getting shots EVERY day, TWICE a day and it’s finally over! Those poor little thighs can finally start to heal!!!

July 12

Day 135… last day of chemo!

July 11

Our baby is FINALLY getting his last dose of cytarabine (chemo)… he only has one more injection tomorrow at noon of chemo and he’s OFFICIALLY done. Then it’s just waiting for his numbers to come up which could take 3 or 4 weeks.

So close to be done and going home! My baby has had enough!

July 3

Today is the day. The 5th and final round of chemotherapy! We are so excited to be almost done but so nervous on how his little body is going to handle all those toxic chemicals.

June 28

22 days into this cycle and his numbers started to come up!!!! It usually takes 28-35 days. Ashton says we need to go home so let’s go round 5!!!

June 7

Day 1 of round 4. We thought round 4 was the worst round but they switched it on us so it will be a little easier and round 5 will be the worst. Like always pray for our babe!

May 29

We have been in the hospital for exactly 90 days. To think we are only about half way through is mind blowing

May 17

Day 2 of not needing oxygen during the night I can’t wait until all this is behind us. We miss our house and being outside!

May 12

Although this is not how I would have wanted to spend my Mother’s Day, I was still thankful for us all to be together. Not everyone gets to spend Mother’s Day with their family and for that I’m thankful. Where we are doesn’t matter, as long as we are together!

May 3

Finally an update I’m excited about.

Without going into so much detail, Ashton know longer needs a bone marrow transplant. They discovered his mutated gene in other family members and because of that they BELIEVE he know longer needs the transplant. With that being said things could change in a few months once they do more research but as of now, we are hopeful for no bone marrow transplant.

Ashton still has to have 3 rounds of chemo but we are hoping to be home by early fall. Although it’s going to be a long summer for us, this is the answer to so many of our prayers.

April 16

I’m beginning to hate these updates.

Not that I have much details but we just found out that Ashton is going to need a bone marrow transplant and we are so heartbroken.

The next step is testing Adriana to see if she has the RunX 1 gene and to see if she’s a match. If she doesn’t have the gene and she’s a match then she will be his donor which will help with the least amount of complications for Ashton.

If she isn’t a match or has the gene, then they will go to the donor bank and find a match.

Thank you everyone who reached out to get tested to see if they could help Ashton but right now I don’t think there is much that can be done as far as other people being tested.

So as of now, we have to wait for his numbers to come back up, it takes approximately 20 more days, and then hopefully have the information about Adriana so we can start the transplant.

We are all so very heartbroken. We feel like every week are news keeps getting worse and worse. Please just keep praying. We desperately just want to come home!

​

April 7

What a blessing to be able to celebrate such a special milestone for such a special boy. Ashton, I know that when you’re old enough, you’ll know just how much you are loved and how celebrating you today, and every day, is just what our hearts needed. Happy 1st Birthday, Ashton, we love you!

April 5

Update time….

Although this is not the update I was hoping for, here we are.

The chemo is working great with Ashton’s Leukemia. The tumors are a lot smaller which is huge, however bc the tumors are smaller, they located a blood clot in the base of his skull that was caused by a tumor. It didn’t create a stroke or bleed but another thing we have to deal with worry about…

Then there’s the worse part. Ashton has a gene mutation called the Run X 1 gene. That gene created his leukemia and COULD create further cancers through his childhood and his life. They took that gene to biopsy that today. That takes a few weeks to get back. If it is going to create further cancers then Ashton will have to have a bone marrow transplant if not he will need 4 more rounds of chemo. Either way, he starts round 2 on Monday.

There are so many short and long term side effects of having a bone marrow transplant starting with 5-10% babies don’t make it through the procedure. Chris and I are not matches because we are his parents but Adriana is, however I believe it’s a very painful procedure to be a donor so I’m not going to put her through that.

March 19

Day 10 of chemo! His final day of chemo this round. He’s been a trooper

March 10

Tonight is the first night of chemotherapy. He will be doing chemo for the next 10 days and then we have to wait approximately 18 days to see how he reacts and to take more scans.

The next 28 days are so important bc it will show how his body reacts and how to take the next steps.

March 6

Little man is feeling better this morning compared to the last several days. He’ll be getting his biopsy results tomorrow. The Oncology believes they know what kind of cancer he has but we are still praying for a miracle.

March 3

Day 3…. They think he has pneumonia and his eye swelling hasn’t been great. Labs came back and there hasn’t been any improvement and some labs are worse.