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Day 37

Hello,  I know it’s been a while since my last post.  Day 37 post bone marrow transplant and it’s felt like a roller coaster -there’s highs and there are lows and as my husband told me (his father battled  cancer for 12 years when he  was a child) in the very beginning -don’t get too high on the highs and don’t get too low on the lows.   He is really great at staying even keeled -perhaps that is why we are a good balance. I am the neurotic mother who tries not to freak and he’s the calm one who knows it’s a roller coaster....that’s the funny part because if you have ever seen my husband coaching the kids soccer games,  you would think it’s the other way around.   😉

Things were moving along as expected. Certainly not pretty, but again we were forewarned that a lot of the issues he was having can come up. The hours we spent hearing about all of the what if’s and what can happen seem like a big blur. On day 21, I noticed that Frankie had started to gain weight and was retaining a lot of fluids. On day 22, I asked  the doctors about this and they brushed it off saying it’s just all the meds that he’s on- this is normal.  Day 23 I wake up at 530 AM, as I always wake up at all hours of the night to check his blood counts online because they draw blood at 2 AM. I look over at Frankie and noticed his left arm is double the size of his right arm. I panicked and called the nurse who doesn’t have any answers for me. I asked to see the doctor and had a resident came in two hours later who also didn’t know anything. Needless to say I started googling like crazy and by the time the doctors walked in at 1130.....I looked at them and asked is he experiencing liver failure as a side effect from one of the chemos?

 I know I’ve mentioned before that I don’t google because I can’t have negative thoughts in my head. However when you are next to your child 24 hours a day you have to look at everything because as much as we would like to think that the doctors are studying his blood counts for hours at a time and looking at every tiny detail, the fact of the matter is they have lots of kids to see and they work very long hours and they’re not going to catch everything 100% of the time so you really need to be your child’s advocate.

So  here we are day 23 and he has gained about 11 pounds in fluid which is 10% of his bodyweight. I finally start to get some possible answers and I was told that he may have VOD.  I will forewarn you. Googling this is almost as scary as finding out he had leukemia.  Apparently, it is a rare side effect that you could get from the chemo that he got the week before the bone marrow transplant that  affects your liver.  It’s hard to detect and it didn’t make sense to the doctors because outside of the fluid retention he felt fine. I was actually told from one of the doctors he’s not on oxygen or a respirator so that’s a good thing.  OMG!!!  

 At 4:00 that same day, his original Dr, the one who did the bone marrow transplant finally came in and when I asked about the one arm being double the size she told me he most likely has a blood clot in that arm and there’s nothing they can do to treat it because his platelets are so low. OMG!!   Keep in mind I have to try to stay calm in front of Frankie all day long while I’m trying to get answers. They scheduled  an ultrasound for 430 and my husband was coming in for the weekend as I was supposed to go skiing with my daughter and friends for the weekend in Windham.     We knew early on that we need to try to keep things as normal as possible for the other two kids as it’s hard enough that one of us is never home, but always at the hospital. The doctors assured me that he was ok and there was nothing I could do and I would only be freaking Frankie out if I stayed so I got in my car and drove to Windham by myself and had my friends take Ally up there. The car ride was exactly what I needed.  

   The ultrasound showed a swollen liver and spleen.  They started him on steroids to hopefully reverse it. I came back Monday morning and switched off with my husband and we got another ultrasound.   Although things looked a little bit better and his left arm had gone back to normal, the steroids were not going to fix it. They started this medication, defibrotide that was only approved two years ago.  The medication runs for 21 to 28 days and is given through an IV every six hours.  Being he was on this medication he had to stop the TPN which was all his nutrition and calories that he gets via the IV as the TPN can also affect the liver.  

 He started to eat and drink this week. Maybe only 300 to 400 calories a day but it’s a start as he has not had anything to eat since February 21.  He also is now able to get out of his room at night and we walk laps in the hallway -we do about a mile every night which is 14 laps around.   His IV pole which looked like a Christmas tree with so many things hanging off of it is down to only two meds and he is now able to take all of his other medications via a pill which is about 25 pills a day over the course of a 24 hour timeframe which includes being woken up at 2 and 6 AM to take his meds.  We still have another 11 days on the liver meds and I’m praying that it will do the trick and we will be able to come home. Yes it sucks being in isolation since February 19, but at the same time, once he’s home, he can’t be doing much so I have to look at the bright side of things and figure it’s better that we are in the hospital where he is safe.  I have to hand it to him. Although he’s not always such a pleasure, being stuck in that room 24 hours a day is quite difficult.  I can’t sit still for two minutes let alone 24 hours. 

 So there is my update. I think everyone knows me by now, when things are not terrific I tend to be quiet as I don’t want people to be freaking out or thinking negative thoughts.   It’s a tough road, but we’re getting through it. 

I also want to mention my friend Joe and his son Brian who are also facing their own battle right now.  Joe also grew up in Montville and has been a police officer in town for years  - please keep them in your thoughts and prayers.   His son Brian is working hard and fighting the fight and his amazing family is by his side every step of the way!  

 I hope everyone had a nice holiday.   I’m seeing so many amazing vacations on Facebook.  My wonderful sister-in-law and brother-in-law took my daughter with their three girls to Italy for spring break. I’m so happy to see her so happy during such a difficult time. Thank you guys -you’re the best!!!  😘❤️

 Praying that my next update will be in the next couple weeks and letting everyone know that we will be coming home and feeling good.  

Thank you everyone for the food via the meal train.  We do need to stop it once we come home as he could only have food made from home-not  that I’m a good cook, but at least we know that everything is going to be sanitized correctly- Drs are very strict about this.  I do make a mean waffle and a grilled cheese though.  

Signing off!

Love to all,

Karen, Frank, Frankie, Ally and Matt

#FRANKIESTRONG

#WEGOTTHIS

 

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Comments (23)

  • Maria Mac
    Maria Mac

    Thanks Karen for the update! Glad to hear you guys are still hanging tough on this crazy roller coaster ride. Also praying your next update will be a positive one! Please tell Frankie “hi” from The Macs. Love you guys 😘 #yougotthis #frankiestrong

    3 months ago · Reply
  • Tara Sambraus
    Tara Sambraus

    What a roller-coaster this had been for you guys but your strength and positivity are an inspiration to all including the Dodgsons. We continue to send positive vibes and prayers for healing for Frankie and your entire family! xoxo

    3 months ago · Reply
  • Jill Chavanne Augustine
    Jill Chavanne Augustine

    KEEP UP THE GOOD WORK YOU GUYS!!! Your posts bring me RIGHT BACK to the heat of the fight. STEP BY STEP, INCH BY INCH !!!!

    3 months ago · Reply
  • Jane Spielberger
    Jane Spielberger

    Thank you for the update. I love your spirit. You keep it so real and I love that you let us enter your brain. You are the poster mom for handling a tough situation and making it as close to normal as possible. Hugs and kisses to you, Frankie and the rest of the family. Praying he achieves the goal of coming home soon.

    3 months ago · Reply
  • Wanda Boyd
    Wanda Boyd

    Thank you for the update. I am so happy to hear from you.

    3 months ago · Reply
  • Michelle Kimball
    Michelle Kimball

    Continuing to send prayers to you all.. Much love to you all.. xo❤️🙏🏻

    3 months ago · Reply
  • Dina Davila
    Dina Davila

    Thank you for the update Karen..God bless you all..I always say a prayer for Frankie everyday..hopefully you’ll be home soon..if you need anything, just let me know 🙏❤️🙏😘🙏❤️

    3 months ago · Reply
  • Whitney Brewer
    Whitney Brewer

    I cried when I read this because it is so hard to be so strong. You are all amazing and I pray for you every night.

    3 months ago · Reply
  • Marie Macera
    Marie Macera

    Thank you darlin... you are one amazing women... and frankie is strong and will beat this!! keep the positive vibes! God always prevails!! thoughts and prayers always... GODSPEED! You all are so loved and supported and we got your back! Love to all!

    3 months ago · Reply
  • Jamie szklany
    Jamie szklany

    Sending good thoughts and prayers from the Szklanys’

    3 months ago · Reply
  • Elisabeth Grant
    Elisabeth Grant

    Thinking of you guys every day - your updates are wonderful, Karen. You're an amazing mom. #FrankieStrong!!!

    3 months ago · Reply
  • Tammy Minsky
    Tammy Minsky

    Thanks for.the update! I’ll just keep praying that everything gets better each day! Frankie, keep fighting so that we can argue about the fact that the Yankees are better than the Mets!!! Lol #Yougotthis #Frankiesteong Love, Mrs. Minsky

    3 months ago · Reply
  • Tiffany Shevchik
    Tiffany Shevchik

    Frankie...continue to stay positive. Always remember that so many people have you and your entire family in thoughts and prayers every day for healing with brighter days ahead. 🍀The Shevchik Family

    3 months ago · Reply
  • Donna L Jacobs
    Donna L Jacobs

    What a great family you are , senfingbmore pastures and good thoughts your way from Lin Island #frankiestrong 🙏🏻🙏🏻💙💙

    3 months ago · Reply
  • Lita Hofberg
    Lita Hofberg

    Phil's phony sister checking in from snowy (in APRIL!!!!) Colorado...it would be lovely if you could plan to ski HERE when all is well w SUPER SON!

    3 months ago · Reply
  • Debbie Simon
    Debbie Simon

    Looking forward to Frankie coming home soon! ❤️ Will keep your friend & son in my thoughts & prayers!

    3 months ago · Reply
  • Stacey Vinder
    Stacey Vinder

    Continued Strength, love and Blessings to you all ❤️ Xo

    3 months ago · Reply
  • Amy Miller
    Amy Miller

    Wow you are all so strong! We think about Frankie and all of you every day and sending our love and all good thoughts. Can’t wait for Frankie to be back home eating your grilled cheese and waffles!

    3 months ago · Reply
  • Heather Cecco
    Heather Cecco

    I can’t imagine how you’re handling this so well, your strength is an inspiration ❤️

    3 months ago · Reply
  • Jason Jones
    Jason Jones

    Thanks for the update. You guys & Frankie are amazingly strong, I'll continue to pray for a full & speedy recovery. 🙏

    3 months ago · Reply
  • Jen Rosen
    Jen Rosen

    Family, friends and the community are all praying for you. Keep positive thoughts and like an arrow, just keep looking forward. You got this. Much love, The Rosenkranz's

    3 months ago · Reply
  • Chrissy Butler
    Chrissy Butler

    Thank you Karen- so appreciate all you words ❤️

    3 months ago · Reply
  • ali trovato
    ali trovato

    My goodness, I am overwhelmed with emotion from reading this last update. What a roller coaster for you all. But, how lucky you all are to have each other to support and balance out each others emotions through this wild ride. Im so glad to hear Frankie is eating. Wont it be fun to feed him his favorite foods and take him out for a fabulous dinner when he's all better!!! Karen, you're an amazing mom and youre doing such a good job. Im so proud of you. Sending love to all of you. #frankiestrong #yougotthis

    3 months ago · Reply

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