The other day one of Mason’s therapists asked if Mason still sees his oncologist or if he’s “done with that”. Last Thurs around 7pm, my phone rang and the caller ID showed that the call was coming from Mason’s oncologist’s office. Immediately, my heart started racing, my palms got sweaty, and my mind went to a thousand different places. I’ve gotten enough after hours calls from doctors to know that those phone calls are never good. I kept telling myself to answer the phone but I was paralyzed in fear. Is his cancer back? Did Dr. Knoderer take a second look at his blood work from our last appointment and find something? My mind flashed back to the after hours phone call from Mason’s cardiologist last August. We had gone in for a routine echo and got a good report. Mason still had pulmonary hypertension but the cardiologist prescribed a medication that would control it. Around 6pm that evening, I received a call from his cardiologist saying that he took a second look at Mason’s echo and he believed that there was a large hole in his heart. This was the cause of his hypertension and he would need another open heart surgery to repair it. My two biggest fears were, and still are, Mason needing another open heart surgery or Mason relapsing. As my phone was ringing from Dr. Knoderer’s office, I couldn’t help but wonder if one of my biggest fears was coming true, again.

I picked up the phone, and what I heard on the other end was an automated message reminding me of Mason’s upcoming appointment. I was furious. Why did they send this message after hours? Did I get a phone call for an appointment reminder last month? I don’t remember ever getting a phone call for an appointment reminder. Is this a new thing? They should know to make these phone calls during the day! Later on, I realized that my anger was not warranted. It was me who had let fear take over.

When you look at Mason, you see an energetic, smiley, strong willed, little boy. You would never know he had cancer.


To answer his therapist’s question of how often he sees his oncologist, he sees his oncologist monthly. Each month, we go to the hospital, get his blood drawn, and then see his oncologist to go over the results. The chance of relapse is real and it’s high. Therefore, we cannot go longer than a month without checking his blood and making sure the cancer is not back. To answer his therapist’s other question of if he’s “done with that”, no, no he is not done with that. He will never be done with that. The chance of relapse will always be there. It will decrease. Eventually we will be able to space out his blood draws and visits to his oncologist. After 5 years of being in remission, he’ll be considered a survivor. But his blood will need to be monitored for the rest of his life.

I can’t even bring myself to think of the long term damage that chemo may have done to his body. We’ve already seen some damage. The reason he needed a second open heart surgery was because chemo weekend the tissue in his body, causing the tissue in his heart to be too weak to hold on to part of the repair from his first surgery. Chemo is a nasty drug but it saved his life. It’s a strange thing to have so much hate for something, yet be so thankful for it at the same time. I remember a video that played in the lobby at Riley Children’s Hospital of a mom with a child who had cancer and had been treated at Riley. She said “chemo is what’s making my child so sick but I have to remember that chemo is not the enemy”. Chemo is not the enemy. It was a revelation and something that I had to remind myself of constantly. I still remember the first day Mason started chemo. They had to tell us about the side effects and how poisonous chemo was. “When you change his diaper, you must wear these gloves because chemo will be in his urine making it very toxic.” “If he vomits on you, change your clothes immediately and wash any area of skin that was touched.” I remember seeing the chemo bag for the first time.

Chemo bag

Class A hazardous drug?! Class A?! Hazardous drug?! And this is going into his tiny body?! It made me so uneasy. Until I became desensitized to it.

I’m working daily on not letting fear and anxiety take over me. I’m reading a great book called “Trusting God” by Jerry Bridges. I spoke with a counselor just before Mason’s second open heart surgery and she gave the book to me. Speaking with her was one of the most freeing things. Everything she said, I needed to hear. I physically felt lighter and more at peace after speaking with her. But then Mason had his second open heart surgery, and it was scary and traumatic. Fear took over again.

I’m starting now to sleep better. I’ve had nights of falling asleep shortly after going to bed, and sleeping through the night without waking up. I had forgotten that not being able to fall asleep, being consumed by my thoughts, was not normal. I had forgotten that not waking up a hundred times throughout the night was not normal. I’m also working on de-stressing. I’m not ready to publicly discuss all of the effects that stress has had on me, but I can tell you that stress is terrible for the body. One minor effect that stress has had on me was changing my hair from curly to straight. Who knew that could happen?  I recently visited my hair salon and my stylist told me that my hair was starting to get curly again at the roots. She said whatever I’ve been doing to de-stress is working. It felt very freeing seeing a physical result of less stress.

So, to sum it all up, our journey most definitely is not over. But, we are healing. Mason is growing, has a full head of thick hair, and is laughing. His personality is coming out and his vocabulary is expanding. Speech is his strong point and, oh boy, he has a LOT to say! He’s getting closer to walking. He’ll start developmental preschool in August. I’m not ready to let him go. I love being home with him and I feel like cancer and heart defects stole a year from me of being home with him. But he’s a social kid and he will love going to preschool. I’m making an effort to be intentional with my time with him. To really enjoy him and not always feel like I need to be working with him on fine motor skills, gross motor skills, flash cards, etc. The first year of his life, he had a heart that needed repaired, and had to get shots during cold and flu season to protect him from RSV. We were told by his cardiologist and pediatrician to keep him in a bubble. So, we did. The second year of life he had cancer and had chemo blasting his immune system. We had to keep him in a bubble. But now, we can break out of that bubble. We went to Conner Prairie for the first time and went to the zoo for the first time. Mason had a blast! We go to the park, spend a lot of time with family, and go to Gigi’s Playhouse once a week. Life is good. We are blessed. We are healing.

Zoo M and me

Zoo m and mom

Gigi balls

Gigi music

A healthy heart

It’s been a long time since I’ve blogged. Life has been so crazy. I just now feel like things are settling down. We are starting to get into a routine with therapies, doctor appointments, and other commitments. Mason still has a lot of doctor appointments and on top of that, we added two therapies- a second speech therapy that focuses on oral motor and a feeding therapy to help with some feeding issues Mason has. That’s a total of 6 therapies a week! Although life is busy, we are enjoying the “normalcy” of it and most of all, we are enjoying our super energetic, healthy boy!

When I last blogged, we had an open heart surgery date of August 27th. That got pushed back because it turned out that Dr. Turrentine, Mason’s cardiothoracic surgeon, was out of the country repairing children’s hearts in Jordan. This extra time before surgery allowed us to take a much enjoyed, much needed, family vacation to Florida! Mason loved the beach and relaxing in the pool that overlooked the ocean!

M pool 2

M beach

M pool

On September 10, 2015, Mason underwent his second open heart surgery. Although this surgery was less complicated than the first, we knew how hard open heart surgery was on the body, and how tough recovery would be. Reflecting back on that day, I remember most the outpouring of love and support we received. During the long surgery, we were surrounded by family and friends. We received many words of encouragement and prayers through facebook, text messages, and phone calls. All of this was such a blessing as it helped calm our nerves and pass the time as we waited for Mason to get out of surgery.

The surgery went well and the surgeon let us know what he thought the cause of this VSD (hole) that he repaired was. When he opened Mason up and looked at his heart, he could see the patch that he did from Mason’s first open heart surgery. The patch was perfectly in tact, but part of the tissue of the heart had pulled away from the sutures. The surgeon explained that when poison (chemo) is pumped into the body, it weakens the tissue. The tissue in Mason’s heart became to weak to hold on to the patch, therefore it pulled away causing a large VSD. The surgeon then went on to explain that he put an over sized patch over the hole and double sutured it. This patch should hold, especially now that Mason is done receiving chemo, making this his LAST open heart surgery!

Mason was able to breath on his own with some oxygen after surgery, so he was able to be extubated in the OR. When we were finally able to see him, he was slightly awake.

M day off OHS

This was a drastic change from his previous open heart surgery where Mason was still intubated, and therefore was fully sedated. Because Mason was breathing on his own, he couldn’t be fully sedated. He was in a lot of pain and very agitated. The next few days, Mason didn’t sleep and was inconsolable. The heavy pain medicines made him very itchy. He scratched his face up so much, and even with socks over his hands, he still made his face bleed. He ended up having to have his arms restrained.

M awake

At different points of the days and nights, we tried holding him, singing to him, playing music for him, putting him in different positions, etc. to try and calm him down and rest. Nothing seemed to work. He was miserable. We were very thankful for my mom, dad, and Tim’s mom who spent their days at the hospital, helping us try and console Mason.

M recovery gma

Janet holding M

Finally, on day 3, the surgeon gave the okay for his three chest tubes to be taken out. One day 4, they started weaning Mason off all heavy pain medications. This helped with Mason’s pain and agitation, and allowed him to finally get some rest.

Tim holding M

Me holding M

Despite Mason’s tough recovery with pain and agitation, physically he was healing very well! On day five, Mason turned a corner, and was back to his usual self. He was playful and ready to move! He even crawled around the hospital room even though he had an IV in his hand and was attached to an IV pole! He showed the surgeon he was ready to go home and thankfully the surgeon agreed! On September 15, we went home!

M toy after OHS

M crawling after OHS

going home

We had no idea how healthy our little boy was and how much he was going to take off with a repaired heart. We did have one more bump in the road though. A hernia was discovered a few weeks after surgery. Mason’s general surgeon said that it either could have happened during open heart surgery, or it could have been there since birth and was just now presenting symptoms. Either way, he needed yet another surgery to repair this hernia.

On November 2nd, 2015, Mason underwent surgery to repair his hernia. This was almost a year to the day of his first open heart surgery which was on November 3rd, 2014. This was also his sixth surgery within that year.

hernia tim

hernia me

The surgery was short, successful, and had a fairly quick recovery. For the first time in a year, we were finally at a point where Mason had no major medical issues on the horizon.

Mason has completely taken off now that he is healthy. He is like a whole different child. He’s a ball of energy, a trouble maker, and has so much personality coming out.

M toiletpaper

It’s been a joy beyond words seeing him grow leaps and bounds and meet new milestones. He’s now pulling up to stand on furniture and his activity tables, crawling up the stairs, and walking behind a walker!

m standing



We can’t wait to see what this next year holds for this healthy and amazing little boy!

Here we go, again

Just a couple of weeks ago I was thinking about how I hadn’t written a blog post in a while and how I should update everyone on the fun summer we’d been having.

Mason had his central line removed at the beginning of June and a whole new world opened up for us. For the first time in Mason’s life, we didn’t have to be careful about germs. Mason had a healthy heart, or so we thought, and although he’ll be immunocompromised for a while (which he takes medication for), if he gets sick, we treat him like a normal child. Restrictions were lifted and we were able to take Mason out in public.

I can’t say we jumped back into the real world, we were still exhausted, but slowly we started to venture out. Mason started daycare twice a week to help socially and developmentally and he absolutely loves it! We enjoyed play dates, going to the park, playing outside in the pool at family get togethers, going to Gigi’s Playhouse, and even simple things like going to the grocery store.

Mason daycare

M daycare

M swing

M blow up pool

Mason Gigi's

M grocery store

On July 23rd, Mason had a routine cardiology appointment followed by his monthly oncology appointment. It was a very LONG day but we received good reports all around.

M echo

M oncologist

Later that evening, I received a call from Mason’s cardiologist. He had taken a second look at Mason’s echo and found something suspicious. He asked us to come back the next day for another echo.The next day, his cardiologist did the echo himself and was 99.9% sure he had found a large hole in Mason’s heart (VSD). This VSD was different than the small one that was too risky to repair during his first open heart surgery. This VSD would require another open heart surgery to repair.

Our whole world was turned upside down…yet again. We were shocked and extremely saddened. The thought of Mason having to go through more suffering and more pain made me physically sick to my stomach.

Because our cardiologist was 99.9% sure and not 100% sure, he got other opinions from his colleagues and scheduled Mason to have a heart catheterization which would confirm 100% if there was a hole in his heart. The cardiologist called the next week and said that he had one colleague who did not believe there was a hole in his heart, but the others did. The heart catheterization was scheduled for August 4th and open heart surgery was scheduled for August 27th.

At this point, we were praying that either the one cardiologist who did not think there was a hole was correct, or that by a miracle the hole would close on its own and the heart cath would not show a hole.

Unfortunately on August 4th, Mason had the heart cath, and it confirmed 100% that there was a large hole in Mason’s heart. Open heart surgery would go as planned on August 27th. We were devastated.

The heart cath procedure went well but Mason had some trouble during recovery. When he woke up, he was in extreme pain and was inconsolable. We were in recovery, an open area with only curtains dividing the patients, for over an hour as we waited for a room to come available on the heart floor and a nurse to take Mason. Mason was unable to receive any pain meds until we had a room. We also couldn’t hold him until then. One of the hardest things as a parent is to see your child in pain and there is nothing you can do. Finally, a room opened up and a nurse was available to take Mason.

Once we got into our room, I held Mason and he was given pain meds which helped with the pain. Unfortunately, shortly after, he began vomiting. He vomited several times and vomited up blood and blood clots. Zofran, an anti-nausea medicine, was given and thankfully his vomiting stopped. He was finally able to get some rest in Grandma’s arms and we were able to go home late in the evening.

M recovery gma

Although we are heartbroken that Mason has to go through another traumatic experience, we are praying some good will come out of this.

Since Mason’s first open heart surgery, he’s had pulmonary hypertension (high pressure in his left lung). He did not have this high pressure before his first surgery so the cardiologist thinks this pressure is being caused by the hole in Mason’s heart. If this pressure goes untreated it can damage the lung. The heart cath shows that no damage has been done to the lung so far, so we are praying that this open heart surgery will fix the hole in his heart and the high pressure in his left lung.

Mason has also been very tired all of his life. Early on, we were told this tiredness was caused by his two heart defects. Once his heart was repaired, we were told the cause was chemotherapy. But in the past couple of months, his oncologist said he’s far enough out from chemo where it shouldn’t be affecting his energy level. This hole in Mason’s heart could explain why he is so tired all of the time. We are praying that after this open heart surgery, we will finally have Mason at his full capacity with a completely healed body.

Most importantly, we pray that God will be glorified through all of this. We pray that when people look at Mason’s story, they see Jesus. We pray that they see a God who is full of love. Who has protected Mason through all of this. Who has comforted Tim and me and given us a peace that surpasses both of our understanding. Who has been faithful every step of the way. Who continually covers us in grace and gives us strength to get through each day. A God who is worthy of all of our praise.

Chemo: Round Six

The last round!

Mason was scheduled to start his last round of chemo on April 21, 2015. The day before, a home health care nurse came out as usual, drew his blood, and then sent it off to the labs. Mason’s counts have to be at a certain level in order to start chemo. We were told his bone marrow would get weaker and weaker with every round of chemo that hit his body, therefore, his counts would take longer to recover. But, with the previous rounds, his counts had always recovered by the time chemo was scheduled to begin. Unfortunately, that was not the case for this round. I had already packed all of our bags by the time I got the call from Mason’s oncologist late Monday night on April 20th. Mason’s counts were too low to start chemo. He would need at least another week to recover. Chemo was rescheduled to start on April 28th pending labs taken the day before. We were devastated. We were physically, mentally, and emotionally ready to get this last round of chemo over with. We were ready to be done.

Although we were devastated, we looked on the bright side and were very thankful to have an additional week at home. This 4 week span was the longest amount of time we had been home since last October, 2014.

It also allowed us time to have a sleep study done that was requested by Mason’s cardiologist. Mason still had high pressure in his left lung and his cardiologist did not think it was tied to his small VSD (hole in his heart). He ordered a sleep study to see if there was any blockage in his airways that could be causing the pressure in his lung. Mason was such a trooper while getting a million wires hooked onto his head and tubes in his nose and mouth!

Mason sleep study

Mason sleep study 2

The results from his sleep study came back a few weeks later showing no blockage in his airways. He is now being referred to a pulmonologist to further explore this issue. That appointment is scheduled for September. We are praying this specialist will be able to give us some answers as to why he has high pressure in his left lung.

On Tuesday, April 28th, 2015, Mason began his last round of chemo!

Mason truck

He was all smiles during the day but then had some complications at night. Off and on throughout the night, his oxygen saturation dipped pretty low. An alarm would go off and the nurse would come in and re-position him in an attempt to get his sats up. Unfortunately this kept happening, and the doctor had to be called around 3 am. She decided he needed to be put on oxygen and ordered a chest x-ray to make sure his chest was clear.

chest xray

Thankfully the x-ray showed that everything was clear. Night after night his oxygen saturation’s dipped and he was put on oxygen. We were only getting about 4 hours of sleep each night and it was exhausting. We were very worried that we’d be kept in the hospital longer than the 7 planned days of receiving chemo. Mason needed to show that he could breathe on his own for several nights in a row for them to let us go home.

Even though we were exhausted and feared staying in the hospital longer than planned, we decided to make the most out of our final stay. Riley Hospital hosted a cancer center prom and it was a blast! Mason got dressed up and we all enjoyed great food, desserts, games, face painting, and music. We were able to meet some other families and Mason did plenty of dancing!

Prom family

Riley prom

Prom car

Prom pics

Riley went all out for this event and I’m so thankful for a hospital who goes to such great lengths to bring joy to these kids. The staff at this hospital are amazing. We will truly miss all of the great people who have cared for Mason for the past 7 months.

After a rough start to this last round, things started to turn around. Mason was finally breathing on his own at night, without his oxygen levels dipping too low. The day had finally come for Mason’s last bag of chemo to be hooked up. We celebrated by playing in the play room with some friends.

last chemo bag

standing cape

Late evening on May 5th, 2015, after his last chemo bag was empty, we left the oncology floor for the very last time with Mason as a patient. We then came home to a wonderful “yippee, no more chemo for me” surprise from my sister.

welcome home

no more chemo shirt

It felt so great to be home! Mason recovered from this round well. He only had to go back to the hospital once, for a platelet transfusion. Daddy came to play with him and helped pass the time.

Platelets last round

To finish out the round, we returned to his oncologist and prayed for good numbers so his central line could be scheduled for removal. The doctors wanted this central line out as badly as we did since it’s a high risk for infections. Thankfully Mason’s numbers had recovered and surgery was scheduled two weeks later. Although his oncologist wanted us to continue to keep him in a bubble for the next two weeks with his central line in, she did give us the okay to take him out a little bit with lots of hand washing and hand sanitizer. Therefore, we went out to dinner and had our first family outing in 7 months! It was such a joyous occasion and freeing feeling.

first family outing

A few weeks later, Mason went in to have his central line removed.

last central line pic

Even though this surgery was outpatient, we were very nervous about it. Mason had a really hard time when they put his central line in. He had several complications afterwards and it took hours before they could get him to breathe on his own again. It was so hard to see the nurse carry him away when I had no idea what state he’d be in when we saw him again. Of course Mason was so tough and was all smiles throughout the very long morning of meeting with nurses, doctors, anesthesiologists, surgeons, etc. and not having had anything to eat or drink since the night before.

before surgery

The surgery went incredibly smooth and we were so thankful for God’s protection over Mason. The surgery took less time than expected and Mason was able to breathe on his own immediately afterwards.

after surgery

His central line was out and I felt like a huge weight was lifted off of my shoulders. It was a relief that I hadn’t felt in 7 months. I finally felt like the worst was behind us. In no way is this journey over, but this chapter, Lord willing the worst chapter of this cancer journey, is closed.

Mason will see his oncologist once a month for the next year for a blood draw and check up. After a year, his appointments will start to space out. After 5 years of being in remission, he will be considered “cured” and a “survivor”. At that point, he’ll only need to see his oncologist once a year for check ups, and then he’ll start going to the Survivor’s Clinic once a year for check ups as well.

Chemo: Round Five

Mason started round five of chemo on March 24th, 2015. Round five was a tough round. It was a roller coaster ride of Mason feeling well and feeling sick.

Almost immediately when we were admitted for round five, Mason started showing symptoms of a cold. His nose started running and he was acting very tired. He only wanted to be held and was having a hard time breathing through his nose.

holding Mason

Our nurse wasn’t sure if his doctor would want to start chemo with a cold. After a discussion with the doctor, he decided to start chemo and put Mason in isolation. Everyone who entered the room had to wear a gown, mask, and gloves. Thankfully our nurses weren’t strict and didn’t make Tim and I wear the full gear. Could you imagine sleeping like that?

After a couple of days in isolation, Mason started feeling better and his isolation restrictions were lifted. This was such great news because Mason loves playing in the play room or strolling around the floor in his push car.

He was even feeling well enough to sit up and play with some bubbles!


This feeling was short lived though and soon after Mason started feeling crummy again. All the drainage from his nose mixed with an already nauseous stomach caused Mason to have a lot of vomiting this round. Since he was already on Zofran, an anti-nausea medicine, around the clock, the nurses gave him Ativan, a relaxant, which put him right to sleep.


Thankfully he woke up the next morning feeling better. He was able to do a fun music session in the play room with some other patients.



Again, this feeling was short lived and the vomiting returned. More Ativan and more sleep!


Thankfully towards the end of our hospital stay, the vomiting stopped and Mason was able to enjoy his car rides around the hospital floor.



Mason was feeling so much better and was moving around a lot! So much so, that he managed to unhook his central line from the IV tubing twice and caused chemo drugs to spill out onto the floor! Thankfully we caught it right away both times so he didn’t lose too much chemo. The chemo amounts that are given need to be very exact so if the doctors didn’t know how much he had lost and it was a big amount that could affect his treatment, it would have made things very complicated. In Mason’s case, both times this happened, it was noticed right away and very little chemo was lost. The doctor reassured us that he didn’t lose enough to affect his treatment.

After 7 days in the hospital, 3 days of one type of chemo and 7 days of continuous chemo that ran simultaneously, we were able to go home while Mason’s counts fell and rose. Even though Mason was able to recover at home, our time was still filled with lots of trips to the hospital.

Mason had a follow up visit with his cardiologist.


During Mason’s previous visit with the cardiologist during his fourth round of chemo, it was found that Mason had high pressure in his left lung. During this visit with the cardiologist, the echo showed that he still has high pressure in his left lung but the cardiologist didn’t believe it was being caused by his heart or his remaining heart defect, a small VSD (hole in his heart). He recommended that we get a sleep study to see if there was blockage in his airway that could be causing the high pressure.

Mason also had to get a platelet transfusion during recovery of this round. He had bruising all over his body so we knew it was coming. Even though I was happy that he’d be getting platelets so he wouldn’t bruise so easily, I was absolutely exhausted and did not want to spend one more day at the hospital! Thankfully my sweet mother came with me and helped entertain Mason while the platelets transfused.



At this point, we were so weary and didn’t have much left to give. We were really starting to feel the effects from all of this and the saddest part was seeing how Mason was affected. One of the things that broke my heart was seeing how Mason had very little fight left in him and how he just accepted his circumstances. In the beginning, when nurses tried to take vitals or change his dressing, Mason fought them hard. He knew the dressing changes would be painful. Mason’s skin is so sensitive that when the dressing was ripped off, the stickiness tore his skin and he would bleed. Every time we laid him down for a dressing change, Mason would cry, push the nurses hands away, try to roll away, rip his mask off, etc. Now, Mason just lays down, puts his hands behind his head, crosses his legs, and lets the nurses do everything.

dressing change


Although this made these tasks less stressful, I wished Mason would fight. I wished Mason wouldn’t accept his circumstances and would let us know it. I hope that he’s just tired and weary and that when this is behind us, he’ll get his fight back.

As God has been throughout all of this, He was so faithful during this round. We were absolutely exhausted and I don’t know how we were still going. I can only accredit it to God’s sustenance. He continued to provide encouragement to us through our family and friends. He blessed my parents with flexible jobs so they could come to the hospital, watch Mason, and give us relief. His church has truly been his hands and feet and we’ve been blessed with many gift cards to provide meals for us. I am absolutely overwhelmed with everyone who continues to reach out to us. There aren’t words to express how thankful I am for our wonderful supporters. We couldn’t do this without you.

Chemo: Round Four

It’s been a while since I’ve written a blog post. When we’re at home, we’re extremely busy with doctor appointments, home health care nurses coming to the house twice a week, therapies three times a week, etc. When we’re in the hospital, we’re exhausted. Typically I would write a blog post while Mason napped in the hospital, but lately, out of physical, mental, and emotional exhaustion, I’ve been crashing and napping when Mason naps.

Mason started round four of chemo on February 24th, 2015. Round four was one of the smoothest rounds thus far. Round four consisted of the same chemo drugs and schedule as rounds one and three. The only difference is that this time around he did not have a bone marrow aspiration or spinal tap since he was in remission after the last round. After his last bone marrow aspiration and spinal tap during round three, samples were sent off for MRD (minimal residual disease) testing. This would tell us how much cancer remained in Mason’s body and if he has a high or low chance of relapsing. Testing came back that Mason has 1% cancer cells in his body. For a typical child, this would mean that he has a high chance of relapsing. But, kids with Down syndrome can handle more cancer in their bodies. So, Mason’s oncologist is pretty confident that Mason has a low chance of relapsing. Although this wasn’t quite the reassurance we had hoped for, we were hoping for a much smaller percentage of cancer cells, we are thankful that Mason should not relapse.


Mason spent five days in the hospital receiving three different types of chemo orally and via IV through his central line. On the last day, the chemo caught up with him and he had some severe vomiting. He slept most of the day and thankfully we were still able to go home once his chemo ended that evening.


Just like round three, Mason was able to recover at home. This time around he did so well, he didn’t even need any blood or platelet transfusions! Recovering at home was still busy though with different doctor appointments, home health care nurses coming twice a week to care for Mason, and therapies.

Our house has been transformed into a little nursing station!


During round four, Mason received an echo since he never had a follow up appointment from his open heart surgery. While we were home recovering from chemo, we went to see Mason’s cardiologist to discuss the results of the echo. The echo showed high pressure in his left lung, which could be caused by the small VSD (hole) in Mason’s heart that was too risky to repair during surgery. We were scheduled for a follow up echo and appointment for the following month.

While we were at the cardiologist, we had to undress Mason to get his weight. When we did this, we noticed that his dressing which covers his central line and keeps infections away, came uncovered! This is a very serious and dangerous issue. We were so thankful to be at the hospital when this happened because a nurse from oncology was able to come immediately and put a new dressing on Mason!


We were very thankful to have a smooth round and have four chemo treatments behind us. Round five would start on March 24th. More on that later!

Chemo: Round Three

On January 27th, 2015, Mason started his third round of chemo. He had a bone marrow aspiration, a spinal tap aspiration and infusion of chemo, was admitted, and then started his chemo via IV through his central line and was given oral chemo. This round was the same as the first round as far as chemo drugs that he received. Therefore, we had a pretty good idea of what to expect.

We were so happy to be back at Riley Hospital Downtown. As soon as we were admitted, we were greeted by many nurses and staff who knew Mason and were excited to see him again. He was given many toys and got daily rides in his favorite car.



Because Mason had been handling his chemo treatments so well, his oncologist let us try this round outpatient once all of his chemo doses were received. If Mason were to have a fever, severe vomiting, or any other serious side affects, he’d have to be readmitted and finish the round inpatient.

After 5 days in the hospital, chemo was finished, and we were able to go home! The next day, we got a sweet surprise from our favorite football team, the Indianapolis Colts!



Twice a week, a home health care nurse came out to care for Mason. One of the things she did was draw blood and sent it to the hospital so his oncologist could monitor his counts. With the past two rounds, Mason needed several platelet and blood transfusions. With this third round, Mason only needed one platelet transfusion! This landed us in the hospital for several hours, but we were able to return home afterwards!

Mason’s little body handled this round of chemo so well. We had been told multiple times by doctors and nurses that with each round of chemo, Mason’s bone marrow would become weaker and would take longer to recover. But, our strong boy actually recovered quicker during this round than he did during the previous rounds!



This cape was sent to Mason from the Happy Soul Project, a blog I’ve been following since Mason was born.


Mason also had the least amount of side affects during this round. Tim and I thought for sure that Mason would spike a fever. He spiked a fever, like clockwork, exactly a week after chemo with his previous rounds. Therefore, although we were home, we were still living out of suitcases, prepared to go back to the hospital and finish the round inpatient when Mason spiked a fever. But, Mason never got a fever! He even got two teeth and when babies teethe, they typically spike a fever. It was truly a miracle.

Additionally, his hair started growing back, he started crawling towards toys, and he started pulling to stand.



I couldn’t be prouder of this little fighter. Not only is he kicking cancer’s butt, he is reaching new milestones. I thank God every day for protecting Mason and continuing to heal him. Throughout Mason’s life, I’ve constantly been reminded of John 16:33 “I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”. No matter how big or scary open heart surgery, cancer, or any other obstacle we face in the future is, God is BIGGER and GREATER!

Chemo: Round Two

Round two of chemo was the longest and toughest thus far. On December 22, 2014, Mason was admitted for round two of chemo. It started with a bone marrow test, which Mason was put under for, and then chemotherapy later that day.

We decided to try this round on the Riley floor at IU North. This hospital is in Carmel, which is where Tim works, and is closer to home. Mason’s oncologist is also located at IU North and is where we’ve been doing our outpatient visits. His oncologist wanted us to do the first round at Riley Downtown since we started chemo so soon after open heart surgery. If anything happened with his heart during chemo, we’d be in the same hospital as his cardiologist and surgeon.

Mason received chemo for three days. For the first two days, chemo was given from an IV through his central line which was surgically placed in him shortly after heart surgery. On the third day, which was Christmas Eve, the chemo had to be given through a shot into the muscle. This chemo can be very dangerous, therefore, they had a crash cart sitting outside of his room, just in case anything would happen. It was pretty scary knowing that they prepare a crash cart “just in case”, but the doctor said they rarely need to use it, which was reassuring. Thankfully Mason handled the chemo well, and after an hour of being monitored, we were able to go home!

We were able to spend Christmas at home with family, which was the greatest gift we received last year!




On December 29, 2014, Mason was readmitted to finish out round two of chemo. He received chemo through his central line for two days, and then again on the third day, he had the shot of chemo into the muscle. Like before, he handled it well.

The side affects of chemo hit Mason faster and harder this round. By New Years Eve night, Mason was vomiting every 5 minutes. It was so hard to watch him get sick over and over again. Thankfully that only lasted one night. Then, about a week later, Mason got a fever. His fever lasted four days and spiked as high as 103.3 one day. He felt miserable and didn’t want to do anything but sleep and cuddle. I can’t say I minded the cuddling. 😉


Mason’s ANC took longer to bottom out at 0 this round. It also took longer to rise. We went home on day 22 during the first round. Day 22 hit this round and Mason’s ANC was still at 0. It remained this way for several more days. Finally, Mason had an ANC of 7. It wasn’t much, but it was progress. We began to get anxious and hopeful that we’d be going home soon. The next day, his ANC was 8. This wasn’t quite the “jump” that we were hoping for. But again, it was progress. The next day rolled around and it was 8 again.

At this point we were feeling so discouraged, anxious to go home, and stir crazy from being in our tiny little room. Unlike at Riley Downtown, we were not on a hematology/oncology floor. We were on a general pediatric floor. Because we were on a floor with kids who were fighting the flu, pneumonia, RSV, etc. and Mason had no immune system, Mason was not able to leave the room. We weren’t even supposed to have our door open. Mason is an incredibly social little guy, so this was very tough for him to be cooped up in a room with little contact with people.

We missed being at Riley Downtown where we could take Mason out of the room and walk around the floor. We also missed the nurses and other families that we got to know who would pop in and say hi when our door was open. We had a good experience at North, but decided we wanted to finish Mason’s last four treatments Downtown. In order to do so, we would have to switch from our oncologist at North to an oncologist Downtown. This was a very tough decision for us, as we absolutely loved our oncologist, but we couldn’t fathom spending his last four treatments feeling like we were in isolation. Thankfully, during Mason’s first round, we met an oncologist who we really liked and he accepted Mason as his patient!

Finally, on January 18, 2015, day 28, Mason’s ANC rose from 8 to 70. After a blood transfusion and platelet transfusion, we were able to go home!

We were also told that since Mason has been handling chemo so well, and because we live close to both hospitals, we could try the next round outpatient. He would have to be inpatient while receiving chemo, which would run about 5 days, but then we’d be able to finish out the round at home while he recovers. Now if he gets a fever, we’ll have to go back to the hospital and finish out the round inpatient. He’s gotten a fever with every round, but he typically hasn’t gotten it until a week after chemo. That should buy us at least a week at home which we wouldn’t have if we had to continue treatments inpatient. We are praying for a miracle that Mason won’t get a fever so we’ll be able to remain home until his next round starts on February 24!

One very neat thing that happened this round was that I was connected with another mother who’s son is battling Leukemia. He too has Down syndrome and is very close to Mason’s age. I think God knew how lonely this journey can be and connected two mothers who truly know how the other is feeling. These two cuties are the toughest little guys I know. I can’t wait until they are CURED and can meet in person!


Goodbye 2014

What a year 2014 has been! This, by far, has been the toughest and most challenging year of my life. But, it’s also been a year full of blessings. I’ve had the privilege of watching my son transform from a sweet baby to a mischievous one year old. I’ve watched him meet many milestones and kick his extra chromosome’s butt! He is a fighter and his strength and resilience through open heart surgery and chemo simply amazes me.

I’ve also had the privilege to walk this tough year with the most amazing man and partner in life. He leads our family strongly, calms my fears with his unwavering faith and trust in God, and can always make me laugh, even in the least desirable circumstances. Our relationship has been tested, especially in these past couple of months while we’ve practically been living in the hospital, watching our son suffer. But, through the tests, our relationship has grown stronger and deeper.

I have learned a lot about trials and tests this year. God does not enjoy seeing us suffer, in fact, Psalm 56:8 says “You have kept count of my tossings; put my tears in your bottle. Are they not in your book?” God loves us and does not put us through trials to see us hurt. I have learned that through trials, if you are willing to seek God, He will be faithful to meet you in that place. Your trial will not be in vain. He will grow and mature your faith. He will comfort you with his mercies and grace, and give you strength. What a sweet and intimate thing it is to go through trials with God.

I am so thankful for the work that He is doing in my life. Without the trials of this year, my faith would not be where it is today. I would not be the woman that I am today. I have found a joy in life that I never knew possible. A joy that I couldn’t experience without the sadness and sorrow that I’ve felt at times this year. I have also found an extreme gratitude for everything the Lord has blessed me with. I couldn’t feel this gratitude without feeling like everything was taken away from me at times this year. 

This year has been filled with many tears, fears, worries, feelings of distance from God, and complete desperation of crying out to God petitioning on behalf of Mason’s life; but it has also been filled with unending joy, laughter, stronger relationships with family and friends, and new people who have come into our life. I have never felt so cared for and loved by our family, church family, friends- new and old, than I have this year. It takes a village to raise a child and God knew we needed a mighty one. He was faithful to surround us with the best village this year.

2015 is going to continue to hold a mighty battle for us. But, I’m excited to see relationships grow, the work God does in our lives and the lives around us, and see Mason CURED OF CANCER! Goodbye 2014, here’s to a new year!


Chemo: Round One

I really had no idea what to expect with Mason going through chemo. I can’t speak for Tim, but I don’t feel like I ever had time to fully process Mason’s pre-leukemia diagnosis. Right after we found out about his diagnosis, we headed from Riley North to Riley Downtown where we spent the day meeting with doctors and nurses preparing for Mason’s open heart surgery. The next day, he was admitted to the heart center in preparation for surgery. Surgery came and went, and during recovery Mason gave us plenty of “distractions” from his new diagnosis. Before I knew it, we were two floors up from the heart center in a room on the hemoc floor, and Mason was receiving chemo. He was all smiles on the first day.

Mason chemo first day smiles

What took us by surprise was how fast and hard chemo hits. Mason started receiving chemo late afternoon on Monday and by Tuesday morning, he had no appetite and refused to eat all day. This continued for four days while he received chemo. After he finished receiving chemo, it was just a waiting game for Mason’s white blood cell count to fall and then rise. It takes about 7-10 days for white blood cells to fall. Over the course of his chemo treatments, Tim and I learned a lot about white blood cells, red blood cells, platelets, and most importantly, an ANC. ANC is a calculation of how strong or weak an immune system is.

Mason’s ANC fell to 0 and remained at 0 for over a week. A person with an ANC under 500 is considered to be at a high risk for infection. Therefore, the doctors would not let Mason go home until his ANC rose to at least 500. This waiting game for Mason’s ANC to fall and rise was very long and difficult.

Mason had good days and bad days. We were surprised by how well Mason handled the chemo. His doctor had told us that kids with Down syndrome handle chemotherapy better than most kids (they also have a higher success rate of beating leukemia), but Tim and I prepared for the worst. Some days Mason had vomiting, was extremely tired, and even spiked a high fever. But most days, Mason was his happy little self. He even had more energy, due to his heart being fixed, on some days….and some nights.

Mason and Me chemo selfie

sleepy energy

Although on Mason’s bad days it was very difficult seeing him sick, the hardest part for me was watching his hair fall out. Since the day Mason was born, he had a mohawk!

newborn mohawk 2

newborn mohawk

It was so hard seeing his sweet little baby hairs fall out.

Hair falling out

He didn’t completely lose his hair though, at least not yet. Some wisps of his mohawk are still going strong.

Mason hair falling out

I know Mason losing his hair seems like such a trivial thing to be upset about, especially in comparison to all that he is going through. But, for some reason, it hit me hard. Maybe it was the realization of what he is going through, the physical evidence that he has cancer and is going through chemotherapy, or maybe it was just me being a crazy, emotional Mom trying to hold on to the last few parts of her “baby” who isn’t really a “baby” any more. Either way, it was tough.

But, through it all, Tim and I made the best of the situation. God really was faithful to allow many visitors to come and help us pass the time. Even Mason’s best bud, his cousin Noah, was allowed to visit.

Mason and Noah

God was also faithful by having Mason treated in one of the best children’s hospitals where they do so much for the kids. They decorated the hospital beautifully for Christmas, and we put up a few decorations of our own.

Christmas in the hospital

One day, elves came to visit and brought Mason some Christmas cheer!


more elves

Many volunteers came around and brought Mason books, stuffed animals, cute hats to keep his head warm, etc.

Nersy and Mason

Volunteers even brought Tim and I some fun toys to lighten our spirits a bit.

family goofy

family goofy smiling

I even got to see Andrew Luck one night! My sister ran into him once as well. The nurses said he comes all the time. He comes by himself, no media, and visits the kids. We are hoping Mason will be able to meet him sometime!

Admittedly, towards the end of our stay, Tim and I began to get stir crazy. We were tired of being cooped up in a tiny room and not being able to leave the floor without Mason. We were exhausted from being woken up throughout the night by nurses and Mason when he was having restless nights. But, God was faithful and knew exactly what we needed. Tim and I would take Mason in a stroller and walk around the floor. During one walk, we noticed the first room on the floor and, particularly, how huge it was! It was nearly twice the size of all other rooms. Day after day we checked to see if the family currently in the room had been discharged. Finally, the room became available! We were able to move into the room and Tim and I finally felt some relief.

large room

Then, just a few days later, Mason’s ANC started to rise. We were finally starting to see the light at the end of the tunnel. God was also faithful to give us a very generous doctor who was caring for Mason the week his ANC started to rise. He knew round two of Mason’s chemo was starting on Monday the 22nd and wanted to let us have some time at home. So, on Tuesday the 16th, when Mason’s ANC rose to 140, he let us go home as opposed to making us wait until his ANC rose to 500! We were so thankful and so excited. After being in the hospital for three and a half weeks for this first round of chemo, I was brought to tears when the doctor said we could go home!

Mason was ecstatic to be at home!

Mason home first round

Round two of chemo started on Monday, December 22nd, but I’ll post more on that later.

I just want to add one last thing. I want to thank everyone for your continued support and prayers. Thanks to everyone who visited us, provided a meal for us, reached out to encourage us, etc. I also want to thank everyone who bought a MASONSTRONG bracelet! It means so much to us to see everyone wearing the bracelets in support of Mason. I apologize to those who have paid and have not yet received your bracelets. I am trying my best to mail out bracelets to all who have paid Tim and me. I promise you will receive them soon!

Masonstrong bracelets