It’s Only Hair

Megan has nearly completed week four of her new chemotherapy protocol.  This current treatment schedule contains three different chemotherapy drugs within a three week cycle.  The first week, she receives two of the drugs, and then the next week she receives one repeat chemo and the third drug.  Week three she gets a break to allow her blood counts to recover enough to start the cycle all over again.  That’s the usual chemo process as the drugs do so much damage to the body that it needs time to recover so the drugs can tear you down once again.  As I’ve said so many times, the archaic treatments we use to treat pediatric cancer are really quite barbaric.  In fact, I can’t help but think that when Megan’s generation of cancer fighters finally makes a change happen, history will look back on how our country treated these kids with a mix of anger, disbelieve and regret.  However, until our country and the big pharmaceuticals decide that finding less toxic and more effective treatments for childhood cancer is a priority, this is the hand kids like Megan have been dealt.

On Tuesday, Megan had her first chemotherapy treatment of her second cycle, and to date, she has handled the treatment remarkably well. Although she has been tired and fights some mild nausea, she has still been able to function without too much impairment.  During her first cycle, it was week #2 that really got to her, but her doctors think it may have been the Neulasta that caused her so much discomfort.  During her previous two go-arounds with chemotherapy, Megan received a daily injection of Neupogen following her treatments, which is a drug to help boost her white blood cell counts.  This time, her doctors wanted her to try Neulasta, which serves the same purpose, but requires only a single injection.  Many of the severe side effects Megan experienced following her week #2 treatment were symptomatic of Neulasta, so this time her doctors put her back on Neupogen in hopes of mitigating the rough time she had a couple weeks ago.  Megan goes back to CDH on Tuesday for her second chemo treatment of this round, and then she starts the daily injections of Neupogen the day after, so we are hopeful that she has a little easier time, but only time will tell.  Luckily, we have Nurse Kortni next door to give Megan her daily shots!  I’m not sure Megan would really trust anyone else 🙂

One of the most visible side effects of chemotherapy treatments is the loss of hair.  Megan has already been through this twice, and just when her hair was really starting to grow out, the chemo struck again.  You would think that losing her hair yet again would be a traumatic experience for an 18 year old girl, but if it was, Megan hid it very well.  Her hair started falling out a little bit last weekend, and by Wednesday, she said it was driving her crazy.  Not only was she constantly pulling hair off of her clothes, but the worst part about it is that it actually hurts her scalp.  She says it feels like she has a pony tail in too tight and it is just constantly uncomfortable.  On Wednesday, she and Deb were getting ready to make the hour and a half drive to Warrenville for her daily 5:15 p.m. proton radiation appointment when she said she couldn’t take it anymore and wanted her head shaved.  In typical Megan fashion, she managed to find the humor in the situation.  She first asked me to make one cut down the middle of her head so she could see what she looked like with a reverse mohawk.  Then she wanted a mullet so she could look like Billy Ray Cyrus!!!  As usual, she managed to take a situation which could have been extremely emotional into one that made Deb and I laugh right along with her.  Once again, I often wonder who is really taking care of who in this relationship 🙂  Finally, we managed to finish the job and after taking a quick shower, she said she felt so much better.  And of course, she still looked as beautiful as ever.

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On Friday, she complained once again that her hair was bothering her, so she asked us to finish the job and buzz it the rest of the way off.  Here she is in the waiting room at the Northwestern Proton Center sporting her newly shaved head.  Once again, that ever-present smile is still there.  She still refuses to ever let cancer gain the upper hand.  I thought this picture was especially telling because not only does it show her without hair, but it also shows the marks on both arms that have to stay there for five weeks to guide the placement of the proton radiation beam.  You can also see how her skin is starting to get red on the lower left side of her neck, which is where the latest largest tumor was that is getting treated by proton radiation.  By the end of her radiation treatment, that area will be severely peeling like a really bad sunburn.  It also shows the port placement in her upper right chest which she has had since December 30, 2014.  The port is used for all of her chemotherapy infusions, IV’s and blood work.  The girl has been through so much, but you would never know it if you talked to her.  She is still as positive and determined as ever to beat down this dreaded disease.  I really don’t know how she does it.

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As I reported last week, Deb accompanied Kenzi back to Madison last week as she had to get back to start her two summer jobs.  By the way, Aunt Janet and Cousin Carly also went to help Kenzi move back in.  Here is a picture of Kenzi and Carly flashing the “W” at the base of Bascum Hill 🙂

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Kenzi is working in one of her professors speech pathology labs and she also works as an aide for a private speech pathologist.  When she took the job with the private speech pathologists last December, one of the deals was that she had to work in the summer because the special needs kids she works with require stability.  Of course, Megan relapsed after Kenzi took the job, so although she had to go back, it was tough on her.  Luckily, through the magic of social media and Facetime, the girls still talk everyday.  Also, since Kenzi needed a couple of things, I took off after work one day to go meet her for a quick supper, which really made my day!  It’s always so good to see Kenzi and know that she is thriving at UW.  We could not be more proud of her!  Madison is really a beautiful place in the summer, so I know she is having a great time taking it all in.  Here is a picture of the two of us sitting at the Union terrace by the lake.

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On Monday, Aunt Janet and Carly were still in town, so we took the opportunity to get together and celebrate Grandma Judy’s birthday at Maggiano’s in Naperville.  It was great to see Grandpa and Grandma Coope and to celebrate the birthday of such a special lady.

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Last week, I posted some pictures from Megan’s graduation party.  Since that post, I have received a few more pictures from the event that I wanted to share.  We had such a great time celebrating not only Megan’s graduation from high school, but also all of the other incredible things she has done in her efforts to advocate for childhood cancer.  Our sincere thanks to everyone who took time out of their busy summer schedules to come and celebrate with us.

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I didn’t have this picture of Grandpa and Grandma Coope when I posted last week.
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Megan loved the taco bar!
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Here is another special gift Megan received to celebrate her #morethan4 campaign in support of childhood cancer.

We are so relieved that Megan has been feeling okay this week, and we are very hopeful that it continues following her treatment coming up on Tuesday.  We also received word from her medical team that they have scheduled her next set of scans for July 8 and 9 to determine if this new chemo regiment is doing its job.  The tumor in her neck has definitely reduced significantly in size, so Megan is convinced that it is working.  If the power of positive attitude has any effect on her recovery, then cancer doesn’t stand a chance!  Although Megan has been doing great this week, there are still moments where her body needs a break, and when it does, her Boo Boo Kitty is right there by her side.  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.

28 thoughts on “It’s Only Hair”

  1. Thank you for the updates…what a valiant trooper Megan is…she truly is my hero…sending all of you love, positive thoughts, prayers, and gentle hugs each and every day!!! ❤️

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  2. My Prayers are endless for Megan & your Family !!! God has many Wonderful things waiting for Your Family !! May His Love help sustain her Spirit !!!

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  3. Way to go Megan! I pray for you often. I had to shave my head about the second week of chemo. It drove me crazy too! I’m familiar with the whole port thing too. It makes it a lot easier. Praying God’s blessings on you. Rock on girl!!@

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  4. I am hoping so hard she beats this cancer back. She is so amazing. I don’t pray but you all are always in my thoughts. Stay strong!

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  5. Megan, I truly understand “It’s just hair.” I’m in the midst, week 6, of chemo treatments and my hair is driving me nuts. Everywhere I go I leave hair and it truly is making me crazy. My vote is for a good head shave but my family is not in line with that yet. At 78 I truly believe that I’d look better without constantly spitting out hair. We’ll see!
    My prayers continue for you, Megan, and your family. By the way,! you look beautiful.

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  6. Such a beautiful girl inside and out. Funny how our kids often are great teachers. We could all learn a few lessons from Megan! The Schott family send regards and many prayers.

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  7. Always praying for you Megan and sending you constant positive vibes! Keep on fighting down that beast! 👍🏼🙏🏼💪🏼

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  8. Megan strong sweet girl !💕🙏🏻👍🏻💪🏻
    You will win. Thoughts and prayers for you this week. 💕💪🏻🙏🏻👍🏻

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  9. If it is possible I believe she is even more beautiful without hair. I can’t imagine how difficult it was for her,but those eyes. Her heart,soul,and passion are visible. Her strength radiates. TRULY BEAUTIFUL!!

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  10. Megan STRONG the ups and downs she has to go through is so hard her positive and smile will get her through it is terrible that these children have to fight this your daughters are beautiful and so strong keep on fighting Megan step by step prayers are with you ❤️🙏🙏❤️🥰

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  11. Thank you for the beautiful photos– Megan, you are a lovely both inside and out. Sending many prayers and positive energy to you and your family.

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  12. It’s just not fair. No one should have to go thru anything like this so many times. Megan, you are an incredible young lady with the most beautiful smile. My heart breaks for you and your wonderful family. 💜

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  13. The hair thing……….. I see it so differently now. My daughter had chemo where she lives, in Las Vegas. She came “home” at the end of her treatment, and at first the mom in me wanted to be upset seeing her bald head. But that changed when I realized it was just an outward sign of the brave heart beating inside her. My oncologist is also at Northwestern. No chemo for me, but as I sit in that waiting room I am in awe of all the brave souls who wear that hat or scarf, and usually nothing at all on their heads. It’s the sign of a fighter. So, “it’s just hair” says it all, my girl. Keep up the good fight. I don’t “know” you, but I’m mighty proud to know who you are.

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  14. Stay strong and positive Megan!! You have an army behind you!! You are such an inspiration to many!! 🙏🏻🙏🏻

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  15. What a beautiful soul. I love reading about Megan’s story. So inspiring. Both of your daughters are so beautiful. Prayers for your family. Megan keep fighting. May all your dreams come true. Bless you all

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  16. Thank you for your never ending posts, Ken. I know it must be tough. Thinking of you all and praying for you and your entire family. Megan is such an awesome girl. Sending her a great big hug. Feel better young lady. That’s my wish.

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  17. Always thinking of you and your family Megan. You are one tough young woman. Your strength and determination are something to behold. Rooting for you to kick this to the curb once and for all.

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  18. Dear Megan,
    💚💙💜 You are such an inspiration to us all ..especially those who are fighting serious illness. You are truly a Warrior ~ with an AMAZING fighting Spirit.
    Sending healing Prayers to you Dear! 🌈

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