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Posted 2018-05-02T14:45:09Z

Day 63

Day 63

We have been home for just over two weeks!   Leaving the hospital was surprisingly emotional. I got in the elevator and just started crying uncontrollably.   I was hoping to get pictures of the big day but as my kids say, I’m a very ugly crier. 馃槈. It’s so nice to be together as a family and sleep in our own beds and not have to spend all day and night wearing a mask and gloves. Matt our 9 year old is especially happy to have all 5 of us together.    Ever since we purchased the orange bracelets to sell to raise money for pediatric cancer research, Matt has worn orange almost every single day and still continues to. Thank goodness he has at least seven different orange shirts and sweatshirts or people would really think the poor kid is wearing the same thing every day.  

Being home has been an adjustment.  We have 12 different medications that have to be given almost hourly starting at 8am - midnight.    Frankie lost about 20 pounds so getting him to eat and drink has been a full time job.  After the BMT and not eating for 2 months, it’s very difficult to get him to eat and drink as his body has gone through a lot and it takes time to get his appetite back and rebuild his strength. Being his caregiver has been exhausting, I cook whatever he wants for him to take one bite of it and say he can’t eat.  I’m tired of hearing my voice telling him to eat and drink constantly in hopes that he stays hydrated and starts to gain some weight back. He is very restricted with what he can eat so basically it’s grilled cheese, cereal and bagels.  Most days we are lucky if he gets 500 calories in him.  

 Twice a week we go back to Sloan for full days of tests, meetings, and certain meds that need to be given via IV.  Typically have to be there by 8am and leave by 4. First thing they do is draw blood and within an hour of his blood being drawn I can see the results online before we meet with the team of Drs so I have tons of questions when we finally get to meet with the team.   I want to make sure that things are moving in the right direction and feel confident that they don’t have any concerns. His liver enzymes were rising for over two weeks and I tried very hard to stay calm(not that easy).   We were going to have to do another ultrasound and a liver biopsy if the trend continued. Luckily, yesterday they started to go down.   Last week they had to take out his line(surgically inserted into his chest for all the meds to be given via IV) and insert a new one on the right side of his chest -original line was on the left side and they also tested his bone marrow.  It  was extremely painful after the procedure, we had to give him lots of pain meds to try to keep it under control  

Last week, my sister Lisa said she’s going to Florida for a few days and suggested that I go as well......Frank and Frankie INSISTED that I go and assured me all will be ok.  My mother and our  other sister Laurie  joined us and off we went for a three day getaway.  It’s the first time in 5 months that I felt somewhat normal and was actually able to relax.   

Frank took Frankie to Sloan yesterday and we got the best news - his bone marrow is clean- CANCER FREE and his liver enzymes are trending down.   We are confident that this trend will continue  and we will pray every day to make sure it does.   In the meantime, I have been a bit of a finatic researching and buying things to keep him healthy- supplements, diet, and devices that limit the EMF from phones and electronics. 

 It has definitely been a roller coaster, the ups and downs can drive you crazy. We are so thankful we are where we are right now, although we still have a very long road ahead of us. Still have to take it day by day and continue to hope for a bright and healthy future.

Again and I can’t say it enough, we are so overwhelmed and appreciative for everyone’s love and prayers. We are so thankful to have so many close friends and family.

 On a separate note, we have another two Montville families that are facing a similar battle. Please keep Joe Dodgson and his son Brian and the Burdick’s and their son Max in your prayers.    They started their journey a couple months ago both and have been such an inspiration!  

 That’s it for now. 

Love to all!

Karen, Frank, Frankie, Ally and Matt

#FRANKIESTRONG

#WEGOTHIS

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Comments (25)

  • Michele Davide Fardo
    Michele Davide Fardo

    sending love and prayers every day. 🙏🏻💪🏽 🧡

    2 years agoReply
  • Marie Macera
    Marie Macera

    Karen, Frank, Frankie, Ally and Matt -- crying happy tears for the news....and keeping you always in positive thought an d paryers.. God will continue to prevail and our prayers will continue.. stay strong.. keep the fight .. .love you much.. Marie

    2 years agoReply
  • Elisabeth Grant
    Elisabeth Grant

    Amazing news about the bone marrow! And I'm so happy for you all to hear that Frankie's liver enzymes are FINALLY trending down! I continue to think of you all every day, Karen - sending positive thoughts to each of you and especially Frankie. Much love! <3

    2 years agoReply
  • Jennifer Pompeo
    Jennifer Pompeo

    Praying for continued good news 鉂わ笍鉂わ笍😘😘🙏🙏

    2 years agoReply
  • Beth Dorfman
    Beth Dorfman

    🙏🏻🙏🏻🙏🏻🙏🏻🙌🏻🙌🏻🙌🏻🙌🏻鉂わ笍鉂わ笍鉂わ笍鉂わ笍 Best news ever. Love you

    2 years agoReply
  • Sheryl Feinstein
    Sheryl Feinstein

    Awesome news! So happy to hear!! Sending love and prayers, stay strong! XO

    2 years agoReply
  • Tara Sambraus
    Tara Sambraus

    So happy to hear the good news!! Continued prayers for Frankie and your entire family. YOU GOT THIS!! xoxo

    2 years agoReply
  • Susan Amelio
    Susan Amelio

    Such great news! So happy for you all!鉂わ笍鉂わ笍

    2 years agoReply
  • Jamie szklany
    Jamie szklany

    Awesome news. We send our love and prayers

    2 years agoReply
  • Roberta Ginsberg
    Roberta Ginsberg

    I know that there is still a long road ahead but reading CANCER FREE, just made me cry ugly tears of joy! Love you guys. Continued prayers for Frankie and these other Montville families and anyone else dealing with life threatening. xoxo

    2 years agoReply
  • Michelle Kimball
    Michelle Kimball

    Such great news.!! So happy to hear this.. Continued prayers to Frankie and your family... 鉂わ笍🙏🏻

    2 years agoReply
  • Sandy Hines
    Sandy Hines

    love you Karen -

    2 years agoReply
  • Christine Friedlein
    Christine Friedlein

    Such great news! Continue to stay strong, you got this. Sending hugs and prayers to you all XO

    2 years agoReply
  • Michele Cattani
    Michele Cattani

    Sooooo happy to hear this amazing great news!!!! As happy tears roll down my face! God continue to bless Frankie every day!!! And keep all of you in my prayers constantly. #frankiestrong#yougotthis#cancerfree 🧡🧡🧡🧡🧡🧡🧡

    2 years agoReply
  • Ivonne Carvajal
    Ivonne Carvajal

    Very happy Frankie is getting better!!

    2 years agoReply
  • Amy Miller
    Amy Miller

    What a journey! Amazing news! We are so glad you鈥檙e home and even though this is a long road, these positive steps forward are so wonderful. We send all our love to all 5 of you!!! Love, Dan, Amy, Ari, Dahlia & Jordana

    2 years agoReply
  • Gayle Greenley
    Gayle Greenley

    Such Great News!!!

    2 years agoReply
  • Jamie mach
    Jamie mach

    There are no better words to hear then 'Cancer Free'!!! Keep strong! We are so happy to hear everything's headed in the right direction!! XO

    2 years agoReply
  • Chrissy Butler
    Chrissy Butler

    Thank you for the update - continued good news and prayers The Southern Frankie Strong Team In Ga

    2 years agoReply
  • melisa imberman
    melisa imberman

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

    2 years agoReply
  • Jane Spielberger
    Jane Spielberger

    Let's go!!! Let's keep keeping it clean Frankie!!!

    2 years agoReply
  • Tammy Minsky
    Tammy Minsky

    Great news! Keep staying strong! Sending love! #Frankiestrong Tammy Minsky

    2 years agoReply
  • Jeanne Corti
    Jeanne Corti

    Think of you guys often and praying for positive news and all of your strength. You got this!

    2 years agoReply
  • Liz Lerman
    Liz Lerman

    Dear Karen and Family, Thank you for writing about Frankie's journey. You have two very amazing, wonderful children! I am so glad that the BMT worked! What a wondeful gift Ally gave him--a gift of health and life. I hope each step on his path back to full health gets easier. Orange is a good color. It holds a lot of energy. Frankie and all of you have been in my thoughts and prayers and will continue to be. I will keep envisioning Frankie improving. Maybe he'll soon be able to eat half of a grilled cheese at a time. With love, Liz Lerman Kling

    2 years agoReply
  • Nancy zdanek
    Nancy zdanek

    Woohoooo! Such great news! 😘😘😘鉂わ笍 Keep strong all. Frankie has got this! Happy happy tears and prayers are flowing. 🙏🏻🙏🏻🙏🏻

    2 years agoReply