Truly Blessed

Hello everyone! We’re still here at the hospital! Today is Day 24. His ANC was 10 today. He’s been doing pretty good. We are a little concerned about his eyes. He rubs them a lot and cries about it and around his eyes its a little pink. We are still investigating. I’ll keep you posted. I am guessing that we will be here another week or so. Miraculously, still no infection!!!

He loves to watch shows like Doc McStuffins and minions on the computer with the nurses! All the nurses tell me that they are going to miss Mac so much! We will miss them too. He likes to dive off the couch and play peek-a-boo in his crib. He also knows where nail clippers go on toes and chapstick goes on lips! 🙂

We are ordering Team Mac shirts. We wanted something we could wear to remember all that Mac has overcome! If anyone wants one just email me. I have to give him sizes by Friday. He is sending me an email today about sizing that I can pass along to you if you want. I think they are going to cost $6. I will attach a pic of the front and of the back with this post. The front says “TEAM MAC”
brittnyrogers@gmail.com

There is a social worker that pops in every so often to see how we are doing and last time she came she said, “next time I see you, I’m going to ask you to sum up this experience for me”. Well, that has inspired me to reflect and no I won’t be telling her all of this but I thought I would share it with you.

November 8th was a Friday and Mac had been sick and we had taken him to the Doctor that Tuesday. By Friday night, I was REALLY worried about Mac. It was about 7pm and I was crying on the phone to his pediatrician and texting him pictures of Mac’s eyelids. Then I got on the videophone with my mom and I cried and said, “I’m afraid Mac is going to die”. It’s weird to know that I could recognize that something was killing him.

Saturday morning we were sitting in a room at the pediatricians waiting for him to come back with lab results. Mac was lifeless and obviously something was very wrong and when he walked through that door my heart pounded like it never had before. The diagnosis was horrifying. We all cried and shock immediately set in. I made Jeremy go call my dad. I just didn’t even know what I would say. The first person I told was my boss. He is a good friend and in that moment, that’s who I felt I could talk to.

The next thing that happened was one of the best things that has come from all of this. It was a strong confirmation that Mac was going to be ok. The spirit testified that to me and I knew Mac was prepared to fight the fight and that he needed our confidence and love.

The drive to Aurora was scary. Mac dozed off in a very eerie way. We had no idea what to expect when we got there. We knew it was leukemia but that was about it. When they told us we could only stop at home for 5 minutes, we knew it was serious.

When we got to the ER there was supposed to be someone waiting and of course there wasn’t. There was a short line and I literally wanted to scream, get out the way! Well I didn’t scream but as admissions was asking questions like name, address, yadda yadda, I interrupted and said, “they just told me that my son has cancer”. He stopped and went to get someone. Time in the ER stood still.

After more results came back we had our first meeting with the oncology doctors. I have no idea what they said. All I remember was how the words ‘cancer’ and ‘chemotherapy’ felt as they came out of my mouth. It was a tangible feeling. They physically hurt to say: like I was going to choke and throw up.

We eventually made it to the oncology floor where we watched our baby boy get hooked up to every machine possible. In the next day or so we had to sit with the doctor and go through a 75 page document about treatment, side effects, outcomes, etc. They needed us to decide if he was going to be “on study”. The doctor, my dad, and Jeremy were all sitting and I was laying on the couch continuously crying. I had never shed so many tears. She kept talking and I kept thinking, is my baby going to die? I finally just said, I have to know. What are chances of that happening? That’s when she said that there were still a lot of unknown factors, but “greater than 50%”.

We put him “on study”. That means a computer would randomly put him in Arm A or Arm B. Arm A was standard of care and Arm B was standard of care + another chemo drug that may help or may not. We said a prayer and put it in Heavenly Father’s hands. He was in Arm A.

In the mean time, I realized that Mac hadn’t nursed for 2-3 days. Any nursing mama knows that is BAD for milk supply. With everything that had happened I just forgot. Not only that, but I had forgot because I had stopped producing a lot of milk. I panicked. Pure panic. Soon after I realized this, I met with lactation consultants and they encouraged me to pump every 2 hours! Pumping to get my milk supply back was one of the most demanding and difficult things I’ve ever done.

Next was his surgery to put in his broviac. We went down to level 2 and I just held him. He was soooo sick. The cancer was killing him. He was so full of fluids and his eyes didn’t open. He wasn’t eating. He couldn’t even hold himself up. When surgery was over, I ran to see him.

Next was the transfer to the pediatric intensive care unit. They were really worried about him. I was terrified but glad to go where he would be so closely monitored. In the PICU, that’s where Mac said his first word: mom mom. I could hold onto that moment forever.

Soon after the first week, we found out that Mac had the genetic markers that made him low-risk. That was the first step to no bone marrow transplant.

Then we came back for the 2nd cycle and found out that Mac went into remission! HE DID IT! HE BEAT CANCER! The miracle we prayed for, came true. It was a feeling of disbelief and joy! That was the second step to no transplant!

Luckily the rest has been fairly low-key. It’s not easy, but it could be so much worse. He’s endured so much. So many vitals, meds, eyedrops, propofol, spinal chemo, regular chemo, EKGs, ECHOs, all of it! Wagon rides and playing with nurses consume Mac’s days. He has exceeded all expectations. Now saying cancer makes me proud. Proud to be part of a larger family of people who fight the fight. Chemo means remission and a future for Mac.

Mac is strong
So are we
It was difficult and strengthening to see Mac fight cancer
The first admission was the scariest
Living at the hospital is demanding and exhausting
I was always hopeful
I cried as Mac’s hair fell out, now I don’t care if it comes back
I am sure that Heavenly Father watches over Mac and our family
I was humbled and honored by the amount of people who had Mac in their thoughts and prayers
I am so thankful for the people who’ve helped us through
We grew closer as a family
We became experts on all things AML
I learned how to advocate for Mac
I fell in love with watching Mac play with his favorite nurses
I never wondered why Mac
I feel closer to my friends and family
I love cuddling and feeding Mac in his crib
I gained new perspective on life
I am so thankful for platelet and blood donors
I’m grateful for research and all of the hospital staff that took us in like family

We are truly blessed