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Posted 2018-06-08T22:32:28Z

Day 100

Wow!  I can’t believe we are at 100 days.  Time sure does fly when you are having fun 鈽猴笍  

The last 37 days have been such a mix of emotions- happy, sad, scared, frustrated and grateful all rolled into one.   Everyday presents a new challenge.   There are so many things that we’ve never even heard of that you could get after having a bone marrow transplant. Luckily, we have only encountered some mild Graft vs Host disease and the BK virus since we are home.   We are just so grateful that we have not landed back in the hospital which is very common after transplant.

The 100 day mark is a huge milestone. This is the time that the acute graph versus host disease hopefully stops and we pray that the chronic Graft vs Host disease never starts. Frankie’s T cells have come in and are almost normal.  These are the cells that help fight infection. We find out next week if they are actually functioning and if so that makes him a free boy!!!  He has not been able to go anywhere other than the hospital and maybe a friends house.  He is still so thin and needs to gain 15 to 20 pounds. His taste buds are totally off and he has no appetite which does happen after transplant. Most of us wish we had that problem, but it is very serious- he was very close to having to get a feeding tube this week, but thankfully he gained 2 pounds.   Apparently, he should start feeling more like himself and get his appetite back by September.

Being a full-time caregiver is no easy task- especially to a very stubborn, strong headed teenage boy. 馃槼.   I spend a good portion of my day telling him what to do and having him ignore me.  It’s lots of fun.   We try to do things with him so he’s not totally bored, one day we took him driving on the beach only to get stuck in the sand as the riptide was coming in and was literally touching the tires of the car.  Thank goodness for all the nice men that came to save us.  I actually went back to work one day a week for about six hours a day. It’s nice to feel somewhat normal again   

Tomorrow is June 9, that was the day Ally was supposed to have her Bat Mitzvah.   It’s crazy how things all work out.   Hoping and praying that over the next four months, he will continue to get stronger and remain healthy so by the time October 6 rolls around, we could have one huge celebration for Ally and all of us.  

 As most of you know, Kristin and Carlo Marucci suprised us with a beefsteak dinner fundraiser. This was a very uneasy thing for me from day one as I didn’t want anyone doing things for us other than being there for us emotionally. Eventually, I stopped stressing about it and started to embrace it as the timing could not have been any better. The dinner was May 10th and the week prior we had just found out that Frankie was cancer free and doing great.  There were 400 people at the dinner and it turned out to be a beautiful night.   We are still so overwhelmed by all of our friends, family, and businesses that showed their support that night. Thank you from the bottom of our hearts!!!  We really are so grateful to be surrounded by so many wonderful people.  

 Cancer or any health issue absolutely changes you as a person. We certainly look at things differently and see things that perhaps we were too busy to see before.   The one thing Frank and I continuously say is even though these past 7 months have been hell, there is still a lot of good that came out of it and we feel so thankful and blessed to be in the situation we are today.    We just need to continue the path we are on and remain healthy for the days, months, and years ahead.   

Huge milestone. He just got on his electric bike and went to go meet his friends at the rec.  His aunt Lisa was kind enough to buy him this bike so he could keep up with his friends. So if you see a skinny kid with shorts and a winter hat on -that’s him. His eyebrows and eyelashes are finally growing back, but the hair on his head will take more time and also appears to be coming in much much darker.   He is still adorable! 

 So the plan from this point is for Frankie to have his freedom, gain some weight,  continue to get strong, and be well enough to be back in school in September and remain cancer free forever!!  

Love to all!

Karen, Frank, Frankie,Ally and Matt

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Comments (24)

  • Amy Miller
    Amy Miller

    Happy 100 days! Love to all of you and hoping for continued weight gain....you are so strong Karen (and Frankie and all the Chics). We love you!

    2 years agoReply
  • Roberta Ginsberg
    Roberta Ginsberg

    WOW! So happy to hear that Frankie is out and about and enjoying some more freedom. Keep on focusing on the positive - October is almost here!!! xoxo

    2 years agoReply
  • alysa wax
    alysa wax

    Great update, Karen! Happy 100 days!

    2 years agoReply
  • Lita Hofberg
    Lita Hofberg

    Yea from Denver!!!

    2 years agoReply
  • Stacey Vinder
    Stacey Vinder

    So happy to hear he鈥檚 on the mend and getting stronger every day. Go Frankie. Blessings to you all.🌺

    2 years agoReply
  • Leslie Grant
    Leslie Grant

    So happy to hear of this milestone. Think of yiu all everyday. 😘

    2 years agoReply
  • Kelly Forst
    Kelly Forst

    SO glad to hear this!! Prayers to all of you!

    2 years agoReply
  • Tiffany Shevchik
    Tiffany Shevchik

    Congratulations on reaching the 100 days Frankie! You are a true fighter...keep going and stay positive! So happy to hear this great news for you and all of your family. Continued prayers for all of you...The Shevchik Family

    2 years agoReply
  • Felicia Cohen
    Felicia Cohen

    😘

    2 years agoReply
  • Elaine Melsopp
    Elaine Melsopp

    Wonderful update Karen. You are doing a terrific job as his Mom doing all you can & moreso for Frankie that we are proud of you. Pray everyday that he remains cancer free & he could truly get on with his life & starts school in September-too. Keep up this hard work & also pray Frankie鈥檚 appetite increases so he could put on more weight. Thank you Karen.

    2 years agoReply
  • Jason Jones
    Jason Jones

    Awesome news! Praying for continued improvement & more positive milestones!

    2 years agoReply
  • Christine Friedlein
    Christine Friedlein

    So happy to hear the great news! 🙏

    2 years agoReply
  • Lauren Kaplan
    Lauren Kaplan

    So happy to read your progress. Will continue to keep you in our thoughts and prayers. Sending love to you all.

    2 years agoReply
  • Barry Kalen
    Barry Kalen

    I am so glad to read about the positive news. Your dad keeps me up to date from time to time. No child should have to go thru what Frankie has, but there鈥檚 a bright light at the end of the tunnel and hopefully before years end Frankie will be back in school playing with his friends...like he should. Love, Cousins Barry and Lenore

    2 years agoReply
  • Chrissy Butler
    Chrissy Butler

    Thank you for the update ! Happy 100 Day! 鉂わ笍

    2 years agoReply
  • Marie Macera
    Marie Macera

    God is forever good and always prevails! Karen thank you for sharing this update... wonderful and great news...continue you positivity and love frankie is such a strong boy and will make a splash recovery I just know it! Lots of love continued prayers and good vibes to all GODSPEED!! Much love

    2 years agoReply
  • Abby Crane
    Abby Crane

    Wonderful news! Sending prayers, positive thoughts, and love to you and your family every day for continued health and strength.

    2 years agoReply
  • melisa imberman
    melisa imberman

    Great news! One day at a time...continuing to send you positive thoughts!

    2 years agoReply
  • Jamie szklany
    Jamie szklany

    Karen, so happy to hear the good news, sending you all prayers and continued recovery.

    2 years agoReply
  • ali trovato
    ali trovato

    THATS A FANTASTIC UPDATE!! Sending you, frank and frankie a big hug!! 100 days is a big milestone! Go frankie go!!!

    2 years agoReply
  • Liz Lerman
    Liz Lerman

    Envisioning Frankie cancer-free for the rest of his long life! The positiveness your family embraces is a huge strength on this journey and for life.

    2 years agoReply
  • Hank Fila
    Hank Fila

    Prayers for Frankie will continue from the prayer warriors of St. Norbert's Parish and the IHM Sisters.

    2 years agoReply
  • Jane Spielberger
    Jane Spielberger

    Loving the plan! Praying for you all that it continues to be reality.

    2 years agoReply
  • Ken & Polly Breithaupt
    Ken & Polly Breithaupt

    So happy for you all for this milestone 鉂 Hoping his strength keeps getting better and better.

    2 years agoReply