red balloons

Hey y’all- it’s a cloudy, dreary August morning. I am tucked into the window seat of Mason’s hospital room, staring out the window at the dark and gloomy sky. For those who don’t follow Mason’s CaringBridge site, as a quick recap- after 65 full days in the hospital, Mason was able to go home on July 29th. We had a brief but wonderful respite from the hospital. Bone marrow aspiration results showed no evidence of leukemia and technically Mason is considered to be “in remission.” However, based on genetic testing that was completed early on in the diagnosis cycle, we know that Mason has a particular mutation within his AML that means it will return if we do not move forward through a full bone marrow transplant. So- we were readmitted for his third round of chemotherapy on Thursday, August 8th and will move to transplant in September. 

The Mason that came into this round of treatment is a completely different kid than the one who was admitted in May. Because the disease is “gone,” he came in feeling great. He has been positive, witty, happy and sarcastic. He has been eating like a champ and has been willing to do all the things he needs to do to help himself stay strong throughout the treatment (i.e., walking laps, getting out of his room to go play basketball, staying well hydrated, etc.). 

This visit has been a refreshing change from our first round of treatment here, where we spent the first week in the intensive care unit and watched our healthy, athletic baby fight a fever of 102 or above for a total of at least six weeks while losing 30 pounds. 

However, every time the little red light gets reattached to his pinky finger (“That’s the only finger that doesn’t affect my ability to keep playing Fortnite, Mom” sigh) to check on oxygen levels and the blood pressure cuff gets velcroed around his arm, I can feel my stress level spike. I watch every nurse’s face for a reaction as they watch the thermometer when taking his temperature, trying to gauge how worried I should be. In my mind, I know the answer to that question is always “not very.” The staff here is amazing, and if there are any symptoms that need to be watched, they are on top of the solutions immediately. 

Just this morning, Mason’s blood counts came back low, so they decided to give him a unit of blood. They woke me at 5:30 a.m. to give consent, then hung the bag and hooked Mason up. About 20 minutes later, his nausea spiked and he had a terrible, all-over body ache. The nurse was in the room within seconds after I called her, stopping the blood transfusion and checking vitals. All vitals were fine, but the doctor was consulted, they administered medications to help with the nausea and the pain, and we were able to finish out the transfusion before 8:30 a.m. 

I share all that to say that I get it- these professionals have my baby’s best interest at heart and are ready to swing in at a moment’s notice to make sure he is okay. 

But that’s where it gets so hard. Because with this disease, there is no way for us to just swing in and erase it. We are doing everything we can to knock it all the way out- but there are no guarantees. When certain symptoms flare up, we can treat them and make Mason feel better in the moment. But we have no control over how his body reacts. And this is where I STRUGGLE. 

During that first week in the hospital, throughout the sleepless nights tossing and turning on the couch-slash-bed that is available for parents, and especially that first night when I was “sleeping” in jeans and a sweater (I was so very unprepared!), I spent hours going over ALL of the what ifs:

What if this is a mistake?
What if I had brought him to the doctor earlier?
What if I’d paid more attention to his sleeping habits?
What if I’d made sure a healthy, homemade meal was on the table every night?
What if I had limited his screen time?

I also had an overwhelming number of what ifs for the future:

What if we have to be here for several years for treatments?
What if this fever doesn’t break?
What if the treatment doesn’t work?
What if…?

This was (and occasionally still is if I’m being totally honest) my reality. 

After living in a state of “what if” for several weeks, I had a literal come-to-Jesus talk with myself. I sat down with my Bible. I read all the verses about worry and about trust in the Lord. I went through some old therapy notes where my therapist and I had talked in depth about a concept called “radical acceptance” and identifying that there is no possible way to have control in certain situations. I sat through a church service feeling angry about the lyrics of the worship songs, which were all about God’s goodness and His plans. 

And then- one day as I was in the car driving to the hospital, a song came on the radio. The song is called “Even If” and is by MercyMe (side note: this is the same group whose song “Beautiful” came on the radio and inspired this “red balloons” blog in the first place- apparently they really speak directly to me!). I’ve heard this song many, many times. But as I drove toward the hospital to put on a bright and cheery smile and encourage Mason to get through the latest nausea and pain, I really focused on the words:

It’s easy to sing
When there’s nothing to bring me down
But what will I say
When I’m held to the flame
Like I am right now

I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone

They say it only takes a little faith
To move a mountain
Well good thing
A little faith is all I have, right now
But God, when You choose
To leave mountains unmovable
Oh give me the strength to be able to sing
It is well with my soul

I have been held to the flame more often than I would like (divorce, widowhood, childhood cancer for my baby). I have been put into too many circumstances where I have no control over the outcomes. I have had to hold onto tiny bits of faith in order to move mountains and get through the days. And I realized as I listened to the song that I needed to start re-phrasing my thoughts. 

Instead of “what” if, I needed to be saying “even” if. 

Even if we have to be here for several years for treatments (God is in control)
Even if this fever doesn’t break (God loves Mason and has His hand on him)
Even if the treatment doesn’t work (God has a plan and will be there with me)
Even if… (God loves me and it will be well with my soul)

Changing up that one small word has made a huge difference in my train of thought. It has helped remind me to hold onto all of those verses about trusting in the Lord. And thinking about those verses, especially in those moments as I wait for vitals to pop up on the screen or for the nurse to react to his temperature, brings a sense of peace to my heart and my mind. 

I’m definitely not saying that I have no more worries or anxious thoughts- those are still present, 24/7. However, I do have a way to try and turn them around to find comfort and peace that no matter what the outcome, I will have the strength to sing “It is well with my soul” (or maybe just say it- music is not one of my gifts- I wouldn’t put anyone through that) because I can rest in my faith and trust that God has it all under control. 

If you have your own list of “what ifs” constantly running through your head, I would encourage you to try to change the phrase to “even if.” It may bring a new perspective and some peace, hope and acceptance to circumstances outside of your control. I’m not saying it is easy, and I’m definitely not saying it will fix everything for you- but when you’re in a season of constant struggle, those small moments of peace and glimmers of hope can mean everything- and I wish those moments for everyone.