Bittersweet

This past week was a big one for Megan as she completed her proton radiation which was necessary to treat the current tumor she has in her chest.  This was Megan’s 6th go-around with radiation, so by this point, she pretty much knows what to expect.  I remember when she completed her first round of radiation, which took place in the summer of 2015.  She was concurrently receiving chemotherapy, so it was a trying time.  When she finished, I remember all of us breathing a huge sigh of relief because we knew that once she completed her 54 week chemotherapy protocol, she would officially be in remission and ready to regain her life.  However, as we have learned over the past four years, cancer doesn’t give up easily.  Although Megan is still the toughest teenage girl I have ever seen, cancer is a formidable foe.  It’s grasp is so strong, and even when you believe you have finally broken free, cancer finds a way back into your life.  Megan still firmly believes she is going to win, but she has learned to curb her enthusiasm when she reaches these milestones.  I think she has been disappointed so many times now that she is afraid to let herself ever really believe the battle has been won.  She doesn’t want to let her guard down, because she doesn’t want to give cancer any indication that her resolve has weakened.  Living in such fear is no way for any teenager to live his/her life, but it is the hand that all childhood cancer victims have been dealt.  As a result, achievements like completing another round of radiation are still celebrated, but there is always that bittersweet feeling that follows.  It’s hard not to wonder “What next?”.

Megan’s final treatment of this 14 day proton radiation cycle was on Wednesday.  Throughout her treatment, she had been handling things pretty well.  Her skin was only mildly burned in comparison to some of her previous treatments.  She was very fatigued, but that comes with proton radiation treatments.  It was not unusual for her to come home and take a four hour nap following her treatments.  The biggest issue that had started to develop was some severe acid reflux and heartburn that was caused by the burning at the base of her esophagus.  In order for the proton beams to reach the entirety of the tumor that is wrapped around her aorta, they had to set the beam where it would clip the bottom of her esophagus.  For the first two weeks of treatment, it didn’t cause too much of an issue for her, but for the past week, it has gotten pretty rough.  Her doctor prescribed a medication to help the issue, but it has actually gotten much worse since her treatment ended.  Once radiation concludes, the effects still worsen for about a week to 10 days following treatment.  For the past couple of days, Megan has hardly been able to eat anything without experiencing severe discomfort.  In fact, early Saturday morning her pain got so bad that it caused her to throw up.  For some kids, throwing up might seem traumatic, but Megan has been down that road so many times from her chemotherapy treatments that she just rinses out her mouth and heads back to bed.  We are hopeful that she finds some relief within the next few days.

As always, the professionals at the proton center in Warrenville were awesome.  On Megan’s last day of treatment, the Child Life Specialist, Aileen, made Megan feel very special.  She and Megan have known each other for four years, so they talk about all sorts of things.  Aileen knows that Megan loves baby goats, so she bought her a little stuffed animal baby goat that Megan thought was pretty awesome.

Aileen also gave Megan a “Love Your Melon” hat and a very nice congratulations card.  Here is a picture of the two of them as Megan holds her completed radiation calendar.

When the kids finish their treatments, the proton center has a room dedicated to the kids where they put their handprint and the date they completed their treatment.  Unfortunately, I believe Megan has the record as she now has her fourth handprint on the wall.  Her first handprint is a little faded, but you can see that it is dated 2015.

Her next two handprints are close to each other on the wall.  She put them next to her friend Olivia’s handprint.

Here are some pictures of Megan completing her fourth handprint (her other two radiation treatments were not proton radiation, so they are not memorialized on this wall).

 

Of course, on the way home we had to celebrate with a coffee drink and a cake pop from Starbucks 🙂

We have been so happy with the care Megan has received at Central DuPage Hospital.  Although we were devastated to see Dr. Salvi retire at the end of 2018, we have complete trust in Dr. Hayani and Dr. Kar.  Also, we feel extra secure knowing that Dr. Walterhouse at Luries Children’s Hospital is consistently consulting on Megan’s case.  Although Megan loves the entire medical team at CDH, she has been talking more and more about getting a second opinion just to make sure we have not left any stone unturned.  To be honest, Deb and I felt the same way.  Although I have read pretty much everything the Internet has to offer on the treatment options for stage 4 Alveolar Rhabdomyosarcoma, we all felt the need to bounce her case off of another medical professional.  Through my own research and the connections we have made with people from all over the country, I am pretty up to speed on all of the doctors who are considered to be at the head of the field when it comes to stage 4 ARMS.  The unique thing about stage 4 ARMS is that because funding for treatment is so limited, the doctors across the country readily share their findings with one another.  As a result, the treatment Megan has received at CDH looks no different than what she would have received at Mayo Clinic, Houston, LA or St. Judes.  The treatments are standard protocol.  However, even knowing that, we felt like we needed to be sure.  Therefore, we sent all of her records to Dr. Arndt from Mayo clinic just to make sure.

On Wednesday afternoon, I received a call from Dr. Arndt who had finished reviewing all 100+ pages of Megan’s medical records.  She was so very kind, but what she had to share with us was exactly as I had expected.  She said that when it comes to stage 4 ARMS, treatment options haven’t changed much in the past 30 years.  It was a jolt to hear her say that our country has made no progress in the treatment of stage 4 ARMS in the past 50 years!!!  How is that even possible in a country as advanced as ours?  We would never accept such a lack of progress with treating heart disease, yet there is no sense of urgency when it comes to our children.  I just don’t get it!!!  She also said that Mayo clinic had nothing to offer Megan that she had not already received from her doctors at CDH.  She also reiterated what we already knew, which was that Dr. Walterhouse is the best there is when it comes to dealing with Megan’s type of cancer.  So although it was good to hear that we are getting Megan the best possible treatment, it was sobering to get affirmation that her treatments options have been exhausted.  As long as her tumors continue to come in treatable locations and continue to grow slowly, surgery and/or radiation will be her treatment options.

I knew hearing what Dr. Arndt had to say would be tough on Megan because she was hoping for something new.  Although I knew it was not what Megan wanted to hear, as always, she handled it like a champ.  I could tell she was a little down, and who wouldn’t be if you just found out that you had no research-based treatment options left.  However, the next morning, I was amazed when I read the Facebook post she had published the night before.  Her post read…

Today I finished radiation for the 6th time. My skin is burned for the 6th time and my body is tired for a 6th time. My cancer is not backing down but neither am I. This is going on the 5th year of me fighting this battle and I am determined to win. Today I was told I don’t have any new treatment options left but to me that doesn’t stop me. Today was rough and I shed my tears but now I am ready to kick this cancer out of my body. It’s been too long and this is the year. 2019 will be the year I beat cancer. I will prove my doctors wrong and win. Thank you to everyone for the prayers and all of the love. Childhood cancer needs more funding so kids like me don’t have to be told there are no treatments left. Thank you for fighting with me. #childhoodcancer #rhabdomyosarcoma #iwillwin

She also posted this picture.

Given all that she has been through, her resolve is still as steely and determined as ever.  Make no mistake, Megan has her moments where the fight gets the best of her.  There are times when the tears flow, and she is definitely entitled to those tears.  However, given all that she has experienced over the last four years, and even hearing for certain that her treatment options are exhausted, she still has the courage to let everyone know that the fight is far from over.  Cancer hits so hard, but somehow Megan just keeps getting up off the canvas to continue the fight.  It’s times like this week that I really don’t know how she does it.  I could only hope to have a fraction of her strength.

It was a bittersweet week, but that’s pretty much the norm with childhood cancer.  Until next week…