June 2, 2022 Update - DAY 29

Ups and Downs 


When we started this journey we knew there would be ups and downs, good days and not so good days.  

Well, this has definitely held true.  

As I mentioned in the last post, Jackie has had her share of the rough days.  She was unable to eat properly for a few weeks and then not at all for about three to four days last week and was placed on a nutritional replacement via her IV.  This also caused her to have next to no energy (calories=energy) and combined with the negative effect the steroid treatments have on her larger muscles, her mobility was very minimal.

I am happy to say that Jackie has responded well to the nutritional support and other treatments.  She has been feeling much better the past few days and has even started eating again.  She actually ate toast and jam this morning and the requested some scrabbled eggs.  This doesn't sounds like much, but this is an incredible improvement in a short period.  She's even taking selfies.



We do know that Jackie still has the GVHD and her care team is still treating for that. We are hopeful with these recent improvements that Jackie is heading in the right direction.

On a side note, I would say one of the more difficult aspects of this journey is being away from family and friends for so long. Today, our baby of the family Katie is turning seventeen.  Time sure flies.


HAPPY BIRTHDAY KATIE !!



Thanks for reading

Mike

Comments

  1. Neil GamaJune 2, 2022 at 1:56 PM

    I'm a short 15min drive from you, but feel a world away. I'm excited to see that there have been some improvements and I'm looking forward to your jailbreak and eventually getting to see that smiling face again and rub that fuzzy head. I'm thinking of you guys often and sending lots of love your way.

    ReplyDelete
    Replies
    1. AnonymousJune 3, 2022 at 9:17 AM

      Hey guys. Nice to see that beautiful face my friend. Good to hear that there are some improvements taking place for you Jackie.
      Hugs my dear sis n brother.
      Happy anniversary as well.

      Delete
  2. AnonymousJune 2, 2022 at 5:34 PM

    Happy birthday our beautiful Katie!!! You are so beautiful just like your Momma. 🥰🥰. Today is about celebration for so many reasons. Let’s celebrate 🎉.

    Mikey and Jackie - if we would name this chapter of the journey it be - “The chaos of fear and the stillness of terror faces the darkness to only bring light. Aka yummy jam and toast”. Celebrate the small joys as they are big!!! Mikey I know it’s not easy watching your loved one in these moments of darkness and physically separated from your world 🌎. And man oh man when that hardness sets in know we hold a candle in the darkness shining brightly for you to be comforted. What is so beautiful about this chapter is the magical essence of what we call “The G.R.I.T” shown by you, Jackie and her team. Grit being the action when you dig deep and then when you think you can’t dig any deeper you do - you dig and dig just abit deeper to have a hand in the determination of your fate facing those obstacles / setbacks / stagnation with hope and belief of brighter tomorrows (yes more toast and jam please) with perseverance to achieve the long goal. We have a cure. You got this! We got this! As we, the Kohut crew, surround you all with love and healing. We are separated by miles but we stand side by side and on those very dark terrifying moments we are on a bended knee sending positivity for a miracle. With strength in numbers (we are many for one) and we fight with you and Jackie holding hearts ❤️ and hands pushing us all forward. Believing in the miracle of what is possible. We will beat this!! We got this!!! As Jackie has shown us what G.R.I.T. really looks like - it is when she wakes, refuses to give up, ready to fight, takes another bite and another bite asking for more scrambled eggs and with her Jedi mind she refuses to give up, pushing to the limit, wiping the sweat off her face in order that she can make a better tomorrow. SHE will WIN this battle!!! She has G.R.I.T (Great Resiliency Internally for better and brighter Tomorrows)🥰🌈🥰 we believe ♥️CM

    ReplyDelete
  3. AnonymousJune 3, 2022 at 9:45 PM

    Jackie I’m so happy to see your beautiful face & hear that you are starting to feel like yourself with the baby steps that you are taking. Every step matters. PB

    ReplyDelete
  4. SharidactylJune 4, 2022 at 5:48 AM

    Looking beautiful Jackie- what a smile!! And Happy Birthday Katie!

    ReplyDelete
  5. AnonymousJune 5, 2022 at 9:06 AM

    Great to see you beautiful face and smile! So happy to hear you are feeling a little better! Keep on climbing, love and hugs with you always 💜 Happy Birthday Katie!! 🎉🥳💕

    ReplyDelete
  6. LenellJune 7, 2022 at 9:20 AM

    Happy belated Katie! Keep up the progress Jackie. We love you all!

    ReplyDelete

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