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.

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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.

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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.

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

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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 🙂

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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.

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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…

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Published by

kabugg

Megan is my beautiful 14 year old daughter who is currently fighting Stage 4 cancer. This is the story of her journey as told by her father.

37 thoughts on “Bittersweet”

  1. You are such a great inspiration. I am sorry you have to deal with this. Keep your faith and stay determined. Keep on fighting for the research!!

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  2. I’ve been following Megan’s jouney for 4 years . My grandson has spina bifda and wendi Yonkers is his speech therapist and she told me about megan , megan is the most bravest girl I know and always has a smile . I pray every morning for her . Shes a inspiration for many and she will beat cancer .your family is always in my prayers God bless you all

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  3. Megan you are in my thoughts and prayers for strength and healing you are a fighter and strong 💪 you will once again show this ugly beast who is the the strongest and will keep fighting you have a lot of followers and you are helping so many just starting out ❤️🙏💋👍👍

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  4. Megan,
    I am in your corner with so many others to see you win your fight!
    Smiles to you,
    Dr. Charles /W. birch, Morris

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  5. This is an excerpt from an article our dil wrote for Best Self digital magazine while battling cancer….”I can choose to be a victim of cancer or to rise up and live with cancer. I choose Hope. I choose to make it great. Do I have my hard moments? Of course, I’m human. I cry, let it out, then I look forward at what I can do right now.”
    Megan, shed those tears girl, then get up and live another day!!! My heart is always with you.♥️💪🏼

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  6. Megan, my name is Doreen Finn. I follow your Dad’s blog every Sunday, what an incredible journey. I’m an adult cancer survivor, my treatment and surgery was at Rush. I had radiation to a tumor in the middle of my chest. Hence, I experienced severe esophagitis. I saw Dr. Lisurdo, gastrointestinal from Rush. He suggested I try alovera juice 2ozs twice a day. The brand I used was George’s, I got it at the health food store. Within a few days I actually started to get relief. I pass this along as a suggestion you might try.
    Sincerely,
    Doreen Finn

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  7. As always prayers for Megan and her family🙏🏻🙏🏻 May God Bless You and be with you during this rough time!! Megan you are a very strong young lady and I admire you for that. You have taken on a fight that no young person should ever have to do. I will be praying for you🙏🏻🙏🏻🙏🏻❤️

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  8. My sister is a nurse at St Jude in the Critical Care Unit. I know you sent your records to Mayo’s but would you consider sending them to St Jude? As you said…I’m sure that they would say the same thing. And it’s not something you aren’t aware of. We just love St Jude. Sounds like you have covered every base. I am in awe of you, Megan and your whole family’s strength.
    Sending love and prayers. Debby

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    1. Thank you for your kind thoughts for Megan. St. Jude’s is a wonderful hospital for kids. Unfortunately, due to a general lack of progress being made with Megan’s type of cancer, the treatments are the same. Megan is very good friends with another teenager with her type of cancer who is being treated at St. Jude’s. Their claim to fame is that no family is charged anything for treatment, which is such a blessing to the families who need it. It really is a fantastic place.

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  9. Megan, you are the strongest and most caring young woman that I know. I am praying for you and all the children that are fighting this horrible disease. Stay strong!!!

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  10. My heart goes out to you and your family. I know you sent your records to Mayo did you consider M D Anderson? They are an amazing cancer research hospital.

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    1. Thank you for your kind thoughts for Megan. I have been in contact with other families whose children have been treated at Anderson, and unfortunately, due to such limited progress being made with Megan’s type of cancer, the treatments are the same.

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  11. You are in my thoughts and prayers each and every day, Megan!!! You and your family are such an inspiration to so many of us!!! ❤️

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  12. Megan, you continue to amaze me! I know there are days that you feel like crying and that’s ok. The difference in you is that you get back up and have the determination that cancer is not going to win. Keep on believing and fighting!! Hugs to you and your family!🤗🤗🤗

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  13. I am only familiar with your story via Wally Carlson. I don’t know you but am praying for your recovery. It’s inspiring that you are such a brave person in face of this horrible process.

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  14. Kudos to you Megan for your determination and positive personality. Your fight is truly an inspiration to all. We will continue to keep you and your family in our thoughts and prayers. Cheers to 2019 being the year you show cancer who is boss.

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  15. Megan you are one brave teenager. There are many adults who wouldn’t be as brave or as strong as you have been, keep on going and fight the strong fight. I know you will win. You have lots of supporters behind you that I hope feel strength from all of us too, You are an inspiration to many. I fight a different medical battle every day and I say to myself if you can do it so can I, so believe in yourself every day/

    On Sun, Jan 13, 2019 at 8:09 PM Megan Bugg’s Journey wrote:

    > kabugg posted: “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 re” >

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  16. Meghan I have followed your life since you were diagnosed with this awful disease. I cannot tell you how I have cried for you and
    prayed for you. You are the most amazing you g woman I have ever encountered. God Bless You

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  17. You and your family are always in my prayers Megan. You are amazing and strong and so beautiful. Keep on smiling as you kick cancer to the curb! 🙏❤️

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  18. Megan I don’t doubt your will to fight, it is truly inspirational!
    Determination is your weapon in this fight and it strengthens each time you are faced with a new challenge. Also the many of us who follow you story have you in our prayers each day! Stay strong !

    Like

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