Tuesday, July 7, 2015

Hi!

I'm still hangin in there!
It's super hard but I know it will be worth it.
I'm pretty grumpy most days I get through it by eating Simply Cheetos White Cheddar (no preservatives so I guess they are healthier) and telling people my mom hits me. Her reaction is pretty funny and it's energizing so I keep saying it.
Other than that I order stuff online,that's pretty much all I do- seriously.
I feel pretty worthless (because I can't help out at home) and ugly because the right side of my face is numb and so my smile looks pretty weird. My right eye doesn't close anymore so my eye is bloodshot and I can hardly see out of it.  My tongue is numb so it makes it hard for me to talk and for others to understand me.  I am deaf in my right ear and that makes hearing hard. Blowing my nose is hard because it hurts my head and so I am stuffed up most of the time. I could go on but you get the idea and I hate it. Oh well I guess though! I'll just keep telling people my mom hits me.

Rachel

ps- I hate pictures so I probably won't post any.

25 comments:

  1. You sweet thing. I'm so sorry you are enduring such pain. I have followed your blog for awhile now, but I can't remember how I came across it. You are in my prayers. I'm so sorry for your struggles, but have felt your faith through your words. Heavenly Father is mindful of you and your sweet tender spirit. Much love to you.

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  2. I haven't commented in a while (mobile blogger gives me a lot of trouble) but I think of you often and check for updates a lot. Your strength and grace is awe inspiring. Sending you lots of love and good thoughts and hugs from Florida.

    Tina

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  3. Just keep on keeping on!!!! I love ordering stuff from Amazon, because the box always has a smile on it.....like it's happy to see me!!! Sending lots of love, thoughts, and prayers for you and your family....

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  4. We are praying for you sweet girl, I'm sorry that it's so hard. Thankful that God is in control xxx

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  5. We are praying for you sweet girl, I'm sorry that it's so hard. Thankful that God is in control xxx

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  6. Thank you for the update, Rachael. My 11 y/o son Ethan has DIPG as well and as his father, it's been a struggle to stay strong for him and his little sister. Your blog has helped me through some really tough nights and from reading your blog it's clear that you've done the same for many other people as well. We've mirrored your trips to St. Jude, the RMH, and to our local Children's hospital. It's hard. But like you, Ethan has maintained his faith and his sense of humor along the way, he's still who he's always been. We're faithful people and I we believe there's truth in God's will, even if we don't always understand. I know Ethan would want me to tell you that you're not alone, that he sends his love and his prayers - and that you matter to a lot of people.

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    1. As a mother of a DIPG kid, I agree that Rachel's blog matters a lot & like you I have spent nights reading her posts. I also trust that this is God's plan and that He has chosen Rachel, Ethan & my sonTarek as fighters for a reason. Keep on fighting Ethan, keep on fighting Rachel, we're with you.

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  7. Hey, buddy, I am so sorry you aren't feeling well. You have been such an awesome example to us and all around you - so faithful. And your humor is the best - your mom is a good sport! Big hugs to all of you. ❤️

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  8. I love you and keeping you in your prayers, that you will have strength to endure.

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  9. You are beautiful. Thank you for letting your spirit shine through this experience. We are better because of you. I am sure Father in Heaven and our Savior are so very proud of you. Praying for happiness for you.

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  10. I've followed your blog for a long time. You are a wonderful light shining into the world. It stinks that you are in pain, but you have His strength to sustain you. Plus, mmmm...white cheddar Cheetohs.

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  11. Dear Rachel, your blog has inspired us & is giving us hope to go on. My 18 y/o son has been battling DIPG for the last 14 months. He was always optimistic, enthusiastic, his pretty smile never departed his face. He struggled to persue his senior year, was looking forward to graduate to enjoy prom... He even has his college acceptance ready for him for the coming fall... Life has decided differently, things have become pretty hard & today he's enduring most of the symptoms you describe.
    We pray for you Rachel, keep on fighting, you're not alone in this. We look forward to your next post always hoping it will be a brighter one.

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  12. That is the funniest thing I have read YET!! "My mom hits me"

    Rachel we are prying for you!!

    Brian Serafin

    Heathers Dad (she to is 17)

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  13. Prayers and strength to you beautiful worrier. While the look from the outside may have changed, the inside is as amazing as ever. You are phenomenal! Keeping you in our thoughts and prayers always!

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  14. Rachel I ask Heavenly Father to Bless you With Peace Comfort and Love
    I read your profile and I see You enjoy playing the piano . I enjoy singing and years ago I sang at the Lost Colony in Manteo NC.
    I read how you are feeling physically and emotionally. I sense you're a strong individual as you are keeping this diary I want to thank You for Sharing your Journey , your thoughts and feelings for they are important and You are important. I even see your sense of humor . I will check in with you often .
    Wish You a Good Day. From Jacksonville Florida.

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  15. Dear Rachel:

    I am sorry that you are not feeling well, but I love that you still have a sense of humor ("My Mom Hits Me"). In my opinion, it's the journey in life that gives us experience, hope, tears and the like. I pray that your journey has more faith and hope than tears. Thank you for being so brave to share your journey with the rest of us. May the Lord bless and be with you and your family.

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  16. I just said, "I need to check in and see how Rachel is doing!". My husband asked me why I felt the need to check in on a complete stranger and I said because she (YOU) got me through chemo and you truly did. "I can do hard things." gave me the strength to fight this beast and it continues to inspire me every day. Keep fighting. Much love to you and your family.

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  17. Rachel, I'm so sorry you feel so terrible. Please be assured that you are BEAUTIFUL and have amazing worth!! You reach more people than you can imagine, and you give hope, laughter, and understanding to so many.
    Prayers for you, sweet girl, and tell your mom to stop hitting! ;)

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  18. You are beautiful and strong! I am truly sorry you have to fight this battle.

    I love that you tease that your mom hits you. Hold on to your humor. It will get you through.

    I wish you all the best.

    -Jennifer in California

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  19. Thank you so much for having the courage to blog and make a difference! You are an amazing person.

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  20. Love to you, Rachel! Please know that many of us are holding you in our hearts tonight ❤️ And every night!

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  21. Brave is the new Beautiful and you are stunning!

    https://www.facebook.com/GoGoldForChildhoodCancerAwareness

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  22. You are so inspiring and you are helping me understand and know what my 4 year old grandaughter was feeling as she battled DIPG. Your blog is so important. You are the voice for the young ones who can't express themselves. Jehovah God will not allow you to go through more than you can bear. He has promised us a perfect paradise, perfect health.and a resurrection hope for everyone who has fallen asleep in death. Revelation 21:4. Thank you for your blog. MaiysMiracle.org JW.org

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  23. You are such an inspiration Rachel... we will all keep praying! Stay strong, you are a beautiful woman.. God does love you. Many, many hugs & prayers.

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  24. Literally LOLed about you telling people your mom hits you.

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