Everything before 8/28/25
In an effort to make communicating with so many people less overwhelming, Rachel and Michael have decided to set this site up. This is how they will share all updates going forward. This is a long first post, but explains everything that's happened so far. Going forward, this page will be updated daily, or as often as there are updates to share. Thank you for the love, support, and prayers they've received so far. Please don't stop praying for Hayes!
8/2-9
Amazing week in Sea Isle with family. Kids had the best time, as always. Hayes woke up every morning saying he felt like he needed to throw up. No complaints of nausea throughout the day. Thought it was odd that he was making the same comment every morning, but didn’t think much of it.
8/9
Vacation is over :( We all drive from Sea Isle to Rachel’s mom’s house in PA. Spend the day at the pool having fun. Savanna is with us too! Layla and Caleb fly back to TX this evening. We say goodbye and Michael drives them to the airport, then drives back to VA. Rachel, the little kids, and Savanna stay at Rachel’s mom’s in PA for the night.
8/10
Hayes wakes up, makes his way downstairs, and Rachel’s mom makes him chocolate milk (normal thing to do when they’re at her house). As soon as Hayes is finished drinking the milk, he throws it up. Not super concerning–but definitely weird. Goes on throughout the day eating normally, having fun, and not complaining about nausea.
Rachel, the little kids, and Savanna drive back to VA this evening. On the way, Hayes throws up in the car. He doesn’t usually get carsick, so this isn’t the norm. When they get to VA and Hayes gets out of the car, he throws up again. At this point, we’re thinking exhaustion and body is out of whack from vacation. Everyone goes to sleep.
8/11
Hayes wakes up in the morning, walks into Rachel and Michael’s room complaining that he needs to throw up. Now we’re thinking stomach bug and preparing ourselves for all of the kids to get sick. Hayes goes on to have a normal day of eating and playing–no nausea complaints.
8/12
Exact same thing as 8/11. At this point, no other kids are sick and things are feeling weird.
8/13
Exact same morning pattern for Hayes. And then Kennedy wakes up and walks into Rachel and Michael’s room crying about a headache. Tears streaming down her face. This is not normal and now we don’t know what to do. Call the kids’ pediatrician for advice, they think maybe it’s strep and recommend urgent care. Jackson has also been pulling at his ears so–just to be safe–Rachel loads up Kennedy, Hayes, and Jackson and takes them to urgent care. No ear infections for anyone; and all rapid strep results came back negative. Doctor says if Hayes keeps vomiting we should make an appointment with our primary doctor and seek a referral with an endocrinologist. Kennedy doesn’t complain again about a headache.
8/14
Same morning pattern for Hayes. Urgent care doctor calls me this morning letting me know that Hayes’ regular strep test came back positive, but Kennedy’s was negative. He prescribes antibiotics for Hayes and says vomiting should subside after a few days.
8/15-8/17
Same morning pattern for Hayes. Still no complaints of nausea throughout the day.
Monday 8/18 - DAY 1 IN HOSPITAL
Same morning pattern for Hayes. Now it’s weird. Vomiting should be done now if antibiotics are working.
As Rachel is finishing putting him to bed and about to leave his room, he throws up again. Other than on 8/10, this is the first time he’s thrown up at night. Rachel and Michael clean him up, get him back in bed, and go downstairs. Savanna is still with them in VA. Rachel feels like something is off. She calls her mom and Tony–doesn’t know what to do–Tony, being Tony, says “go to the ER and don’t leave until they do bloodwork and get some sort of scan”. Rachel feels weird about this but talks it over with Michael and decides to do it. She wakes Hayes up and they head to the local ER about 20 minutes from home.
Hayes is taken back quickly and is in great spirits. Loves the alone time with mom and is living his best life with full control of an iPad. Rachel explains the symptoms to the doctor and she immediately recommends a head CT. By 1145 PM, the ER doctor found a mass in Hayes’ head, had called Children’s National Hospital to speak to the pediatric neurologist on call, and had organized a transport to get Hayes over there ASAP. Luckily, Savanna is at Rachel and Michael’s house, so Michael heads to the ER to meet them. Rachel’s mom leaves PA and heads to VA to be with Savanna and the other little kids.
Transport arrived at 2 AM, Rachel and Hayes rode in the ambulance and Michael followed behind. Arrived at Children’s at 330 AM.
Tues 8/19 - Day 2 in hospital
By 5 AM, a neurosurgeon doc had talked to us. He explained that Hayes has a tumor in his brian that is blocking the 4th ventricle, which is blocking fluid from leaving the brain and causing it to build up. That fluid build up is causing pressure, which is causing Hayes to vomit. Only option to remove the tumor is surgery, which will be scheduled ASAP. Luckily, the tumor is in a spot that they can remove it.
Hayes is admitted and we’re moved to an in-patient room on the neuro surgery floor. We take a visit to the healing garden.
Hayes gets an MRI so the doctors can have a better idea of what’s going on.
MRI results confirmed the large mass in the 4th ventricle and also growing into the 3rd ventricle. Based on size, placement, and Hayes’ age, neuro surgery and neuro oncology teams think it’s medulloblastoma–but can’t be sure until after they remove it and get full pathology results. They also saw 2 masses in his auditory canals, potentially something small by his pituitary gland, and potentially something small at the bottom of his spine.
Hayes is happy as can be when he wakes up from the MRI.
Weds 8/20 - Day 3 in hospital
Long day of meetings with more doctors than we knew existed.
Neuro surgery team explained what to expect for surgery.
Neuro oncology team explained what to potentially expect after surgery. Even though no one will say the word until after pathology results are in, it is cancer. We’re prepping for a long road of treatment that will probably consist of a combination of radiation and chemo.
Michael’s mom flew in from TX to see Hayes and help with the other kids.
Another visit to the healing garden with Hayes.
Kennedy’s first day of 1st grade today (Michael was able to be there with her) - and Layla’s 15th birthday!
Rachel and Michael talked to Hayes tonight to give him an idea of what would be happening tomorrow. Hayes was building a lego and was in good spirits.
Thurs 8/21 - Day 4 in hospital
Began the trek down to the surgery area around 730 AM. Read some books while we waited for Hayes to be rolled back. He was happy as can be.
They rolled him back around 830 AM. We got two update calls during surgery: one to tell us when they started and one to tell us, “They’re closing, Hayes is stable, and everything is going well”.
Post surgery, the surgeons said they’re very happy with how everything went. They got out what they could and they’ll have a better sense of how successful it was after a head CT and MRI tomorrow. They said Hayes did great.
Hayes will spend the night in the PICU for monitoring. It was a long night with lots of vomiting. It was not a peaceful night of sleeping.
Fri 8/22 - Day 5 in hospital
CT scan in the morning and MRI in the afternoon. Both showed the surgery was successful. Hayes was able to move out of the PICU and back into a regular room. More vomiting. And other side effects from surgery: barely talking, difficulty walking and moving around.
Michael’s mom visited Hayes this morning. Rachel’s dad came to visit Hayes tonight.
Sat 8/23 - Day 6 in hospital
He slept very soundly last night. Asleep around midnight, woke up at 4 to poop, then slept until 11 ish. Tried some applesauce and juice, threw it all up. Occupational therapist came in shortly after and worked with him to get dressed, walk to the window, climb up on the window bench, climb up on one of the chairs in the room, and a few other exercises. He needed help but he was really trying and was able to do some on his own. He’s saying more words and small phrases today, but still communicating mostly through head nods and hand gestures.
Sun 8/24 - Day 7 in hospital
More therapy appointments today. More throwing up.
Michael’s mom came in the morning to see Hayes before flying back to TX.
Mon 8/25 - Day 8 in hospital
Still not able to hold food down and the doctors are starting to explore next steps for that.
Rachel was able to leave today to see Kennedy, Jackson, and Lincoln for a bit. She was also able to go to Kennedy’s back to school night. Hayes went to the healing garden with Michael; and a therapy dog came to visit!
Savanna flew back to NC–we don’t know how we would have gotten through the last week without her. So thankful. Aunt Laura, Cara, Aria, and Asher made the ride to VA to help Rachel’s mom with the kids. True angels. Kennedy sent a game for Hayes (which was a gift from Mrs. Evans, the preschool lead at his school). He LOVED it. It was so fun to watch him enjoy something for the first time in awhile.
Tues 8/26 - Day 9 in hospital
Long day yesterday and today with visits from speech therapy, physical therapy, occupational therapy, neuro surgeon team, neuro oncology team, x ray people, stomach doctors, child life therapist, therapy dogs—you name it, they were probably here.
Hayes is still throwing up after eating (which is why the stomach doctor got involved today), but tonight he was FINALLY able to keep down a half of a piece of pizza. If we keep down the path of throwing up then the doctors are going to start pursuing different options (NJ tube, NG tube, other ways to get nutrition into his body) since it’s been so long since he’s had food. Still not allowed to go home until he eat solids without throwing up.
We are still waiting on pathology results from the tumor. Oncology team says it could be another week or two, but we have started talking about preparations for radiation, etc.
Hayes did incredible with his therapists today. As of right now they do NOT think he’ll need in-patient therapy. Two highlights of my day were:
1- He rode a therapy bike!!
2- Speech therapist had him sing wheels on the bus with her, and he was singing along! One of the verses she used was “the mommy’s on the bus say I love you”, and Hayes sang it clear as day. It was the first time we’ve heard him say “I love you” since before surgery.
Still no smiles…but it was a really good day.
Weds 8/27
We thought we turned a corner with vomiting. Last night he was able to keep down some jello and graham crackers. Breakfast this morning, threw up again.
Lots of visits today with physical therapy (another bike ride and a scavenger hunt), occupational therapy (played basketball), child life specialist (made slime, started to build a volcano), stomach doctors, neuro surgeons, and neuro oncologists.
He is doing great in therapy and ENJOYS it (even though he gets tired and frustrated easily…he’s getting stronger everyday) It’s fun to watch.
We thought we were making progress with vomiting, but was only able to keep down some jello again late at night. I’m thinking the doctors are going to recommend some sort of therapy tomorrow to get some nutrition in him. In the meantime, the neuro surgeon and neuro oncology teams are trying all kinds of medicines to stop the vomiting–just hoping something sticks.
Still no word back from pathology on the tumor. Neuro oncology team thinks they may get an initial result back tomorrow–we’re hoping to hear something.
Still using lots of hand gestures, head nods, etc. to talk - but we heard more words from him today than the past week combined.
BUT, THE MOST AMAZING part of the day was seeing Hayes smile and hearing him LAUGH multiple times today. It’s been the first time we’ve seen this in a week. It was so good to see our happy little angel boy again. He’s in there!!!! Tons of fun at a superhero party this afternoon, too.
