Journal

Journal entry by Kelly Gorczyca

Hello fellow social distancers!!  Welcome to the world of lock down 😀  Can you believe its been 6 mos since Molly's bone marrow transplant!  All is going well, Molly was down at CHOP on friday to get a Covid19 screening test done and an EKG.  The Covid19 screen is so we can go down on Monday and get her 6mos bone marrow test done, which requires sedation and the EKG is a screening to make sure the meds she is taking aren't having any adverse effects on her heart.
All Molly's numbers have been doing well, we are not in the norm range but that may be a combination of still being on a low dose chemo or just a matter of more time.  A question on my list for Monday!  We have a meeting with the Oncology team as we have been officially transferred off the transplant team.  Thats a good thing 😎 
Molly looks amazing and has been training to see if she can get on the field for some play time this fall. it is a slow process, she had lost quite a bit of muscle mass along with having to regain cardio conditioning.  We put together a gym in the basement with the equipment from my office.  It has been nice to have it during this time, not just for Molly but for myself and Tyler too! 

Tyler had knee surgery March 9th which we got in the day before things went into lock down, very lucky!  Six weeks of non weightbearing was definitively easier to manage being home.   We have been able to use this time to rehab  which is important since in the fall.....(horns sounding.. dot di di da) Breaking news...Tyler has decided to join Molly and his two cousins, Emma and Cullen at Rowan University.  We are all delighted! Tyler will be throwing the Javelin at Rowan and is very excited. Rowan has a very strong track program that has produced multiple All-American javelin throwers.    I know, I know...what happened to soccer you ask?  I suppose two knee injuries, one surgery, a dislocated shoulder and multiple ankle injuries has taken its toll lending to him deciding on a sport with less contact 😀   Something about wanting to still walk when he gets old-er. 😎   

It's funny,  I think about the corona virus timing and how it fell when it did.  I can't lie,  it has been good for my family.   At first I don't think we could see how it would be good for us because it was hard to be on lock down.... again.   Now, we have the time to eat dinner together nightly,  enjoy family game nights  and just having time to reconnect. I know if we weren't on lock down we would have all been off running in different directions with work, school and sports and after a year like we had, quiet time together has been a gift.  Not to mention it has made things a little easier for Molly now that we, well, the entire world, are all on lock down together (but separately 😷)  and not just her.   

Tomorrow is our trip to Chop...wish us luck!  We will let you know the results when we get them. 

LPP my friends...especially during this time!


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Journal entry by Kelly Gorczyca

Happy March everyone.  Although I love the beautiful weather and the ability to get outside I am a believer in the March lion and lamb concept and  wondering if March may  not “go out” so peaceful 🤓🤨🦁
I wanted to share a story as often we are asked how did we stay strong and positive during our detour.  Okay so aside from the serious  fight or flight adrenaline surge you are on,  you learn to look for the moments or signs.  A few weeks ago we had a day of yucky news.  Molly’s numbers continued to drop and they wanted to move her 4 mos bone marrow test up a little.  The “C” word was returned to the table.  (All is fine and tests all clear!!! Ok breathe in and out!   😉).  The only noise on the drive home that day was sniffles and tissues being pulled from the tissue box.  Then Meghan Trainors song “All about that base” popped in my head only with the chorus being “it’s all about the Bactrim, bout the Bactrim, no cancer”  instead of “all about the base, no treble”.    I played it in my head as my mantra every time I started to worry. 
That night was Valentines and we had a group of friends over,  Tyler and his girlfriend joined us and molly ended up home too!  It was such a fun night and a great distraction.  Everyone was around the dining room table and I had to go in the kitchen for something that I don’t even remember what it was ( happens a lot 🤨).  Craig had Pandora playing and as I walked in the Kitchen I heard the words “She is cancer free”.  Exactly those words.  I stood for a long moment quiet then heard that is was a commercial for a hospital.  I thought “from your lips to Gods ears” and immediately heard that it was from His  lips to my ears.  Still gives me goose bumps and teary eyes.  
We made our way through the weekend and did the bone marrow test that Monday.  Through that week the results came in, each one coming up clear as a whistle,  including the FLT3.  We did a little dance with each result and Meghan Trainor was correct ...it’s all about the Bactrim. 🥳😇💪🙂
I say this story because we all are experiencing difficult times and with them a level of chaos that is inevitable.  The best and  most important thing we can do in that time is to quiet yourself enough to notice the signs.  They are always there!  
  Welp, There you have it....how to stay strong in the mist of chaos, sing Meghan Trainor songs and hear voices! Lol
In the mean time Molly has been entertaining herself with visiting friends and roaming about more freely.  We are keeping it a bit more low key then I imagine she would like due to her lower numbers and this years viral threats.  
We visited with Ryan and his family at an ESU basketball game.  He will be going in for transplant the beginning of April 🙏🤞.  The timing process is tougher with his donor being from outside his family.  Please continue to keep him in your prayers during his detour!!
A little follow up and a GIANT thank you to all you voters ( I hope your thumbs have recovered).  I am speaking of the important election not the presidential one 😉 😄.   Tyler won  the Game ball for player of the week.  They presented it to him at the HWS championship game.  It came at a great time as they lost HWS finals in an OT battle!   I will get Craig to post the picture.  
❤️🙏😇
LPP

Journal entry by Kelly Gorczyca

Molly is doing great!!  blah blah blah now the real reason.  Ok so this isn’t exactly a caring bridge story but being currently unemployed,  I have the time to obsess with things that will make you politely recommend I get back to work.... 😋😉
Hackettstown tigers basketball is on a great run and are having a banner year. Tyler scored his all time high of  27 pts and had 8 rebounds in the semi-finals of the HWS county tournament this past Saturday.  They will be playing in the finals this coming Friday at Centennary College 7pm (FYI to all you locals) 
His performance in the semi finals is what got Tyler nominated for this NJ sports player of the week challenge.  We have been voting since yesterday and it goes til tomorrow.  We have the lead but there is a new kid making a run on us!🤨.  Help!!  We need votes!  You can vote over and over and over!!   We have til tomorrow at 3 so I need reinforcements to keep this going!  Vote all day, many times in a row, as much as you can!!  I will provide notes to employers and teachers as needed to excuse you until we win😃.  Lol ...but seriously get voting 😉😁
If Tyler wins they come to the school and present him with a game ball for his outstanding performance and he gets a neat photo op.  So rally up troops, click on the link and get to voting!

Thank you for your patience and understanding during this commercial interruption we will resume Mollys Detour shortly 😜!   Go Hackettstown Tigers !!!
LPP
Kelly



Journal entry by Kelly Gorczyca

Hello from Allamuchy NJ!!!   We added a new last time ever to our growing list with...
Last time to wear a mask✔️.     Molly is free to move about...sorta.    We find ourselves in the midst of flu season so we need to be careful.  Fortunately we live where we do..minimal crowds and lots of outdoor opportunity.  

Molly’s follow ups are every two weeks now.  Her last visit showed a drop in her platelets...don’t panic, maybe I should have started with saying that, I know they should have !😀🤨  They believe it may be a side affect of the Bactrim they started two weeks ago.  We are in the midst of the medication dance.  I am starting to pick up on how this works, whatever drug I just refilled is the one they discontinue 🙄.   We are getting there though I can actually fit them in the little daily pill boxes now. 
The platelets being low keeps her from taking the  XOSPATA® (gilteritinib).  We are mixed with how we feel about that.  It is the “non chemo?!” but really is a chemo drug they want to use prophylacticly to fight the FLT 3 that isn’t present.  🤔🤓.   It is so hard to make some of these decisions of what we need to do and what is too much now that she is cancer free and her body is trying to get stronger.  We research but everything is so new they really haven’t shown definitive results.  We said we would take it but I put a little SOS out to the universe to make it go in the way that was best for Molly.   So far we were delayed getting the med between insurance approval  and pharmacy locating it...now we have it but can’t take it with her platelets below 75 and by the time we go Friday, even if her platelets recovered, we will be past the window of the time it is supposed to begin (typically 30 days post transplant sometimes up to 90 but we are at 120).  Hmmmmm 🤔!   I’ll let you know what they say.  
Molly has been slowly getting back into the swing of things.  She has gained a little weight 👍.   She went out on that beautiful monday we had for a short walk/jog  workout 😳💪🏃‍♀️....  I  love her initiative and determination.  Molly reached out to her  high school coach, Steve and he now has her coming to work for him helping out with his club team. It gets a stick in her hand 🏑 and Panera money in her pocket😀 not to mention the  Biggest smile I have seen in a long time! (Thank you Steve ❤️🙏)

We continue to be humbled by the kindness of our community!  HHS basketball program had a fundraiser in honor of Mollys Detour with the donations going to Smiles for Margaret.  To see the stands filled with all the people who have done so much for our family, PRICELESS!!!.  We were thrilled to have the opportunity to say THANK YOU, in person, to so many of you!!!❤️❤️🙏🙏.  
 I was really impressed Craig was able to make it through his speech!  I wouldn’t have 🥺😢😭😀!! 

Being home has been so wonderful.  It is taking some time to get our feet back under us but each day I see improvement. 
I am currently without a space and trying to find a new one.  I was anxious to get back to work but now realize a little down time was necessary.   I have started to see some clients from home to shake off some of the cobwebs 😀 and hopefully will find a new space soon.  I will keep you posted.  
Molly’s  friend Ryan will be going in for transplant in a few weeks, please continue to work the same magic for him as you have done for us!  
Forever grateful!❤️
LPP

 Ps I just saw it is one month to the day we have been home and last posted... hooray to one month home anniversary.  I will work on the one month to post part 😉


Journal entry by Kelly Gorczyca

We’re hooome!! This time for good!!  Let me say first the removal of the broviac went super smooth!  Can’t say  the same for the day.  We were scheduled for 2 o’clock which is late considering she can’t eat after midnight the night before.  Now add in a three hour delay!😫.  We didn’t get out of there til 6:00 both tired and very hungry.  First stop- smoothie and food.   
The day before ( Tuesday) was our pre-test day. Both her sonogram and EKG went picture perfect.  The tests were a base line for the medications they are looking at for her maintenance program....this is where my brain starts to hurt so I will tell you the stuff I have digested and like.  
I learned about the test levels we have been sharing with you.  The first results the nurse shared to the one receiving the “fantastic news” and “exclamation marks” now make sense. 
The test results we shared first were the in-house under microscope results and have a 5% possible undetected cell presence  (hence good but not exclamation mark worthy).  The MDR has a 0.01%. Both these tests were clear.  The results showing no FLT3 is another level of certainty there is no cancer since it is only present when the unfriendlies are.  
The last one, which is the one that earned the nurses highest excitement (!!!!! To be exact), was that Molly is 100% Tyler both blood AND bone marrow (though still not biceps  😀💪).  This is not always the case this early on or without the usual tweeking on their part!! 
All Tyler cells means no Molly cells, no Molly cells means best chance for  no unfriendlies!!!! Now we get why the exclamation marks!!  From where I stand Molly crushed it ✔️✔️✔️and✔️ with a big A+ across the board.  
The game plan from here is maintenance and monitoring. AML is just what we call it..unfriendly.  But it is actually the FLT3 that is the reason for this maintenance,  if that was not present initially this would not have been the conversation.   The Midostaurin or the Gillabrand will be to manage any possible hiding FLT3 and she will be on it for up to a year.  
We will have a bone marrow test at 4 mos and then 6 mos as a form of monitoring.  Also more blood work to look for the presence of certain markers that will indicate her immune system is kicking in.  They start looking at 4 mos but typically expect to see it more around 8 mos.   I think that about covers it and should explain why my brain hurts!
Did I mention WE ARE HOME!!!  Now for the moment I have been waiting for ...
LAST night in Philly✔️!!!!  
LPP everyone!!

Journal entry by Craig Gorczyca

Happy New Year to everyone.  So far, 2020 has started with great news.  On Wednesday, we received notification that Molly's MRD was negative. Minimal residual disease (MRD) is the name given to small numbers of cancer cells from the bone marrow that remain in the person during treatment, or after treatment when the patient is in remission. It is the major cause of relapse in blood cancers, including leukemia.  Yesterday, we also received word that Molly no longer has the FLT3 gene (thanks Tyler).  This was the protein (gene) that messed with the growth of white blood cells and complicated her treatment.  This is also what made the transplant a must. 

The schedule going forward is baseline testing on Tuesday and then an operation on Wednesday to remove her broviac.  Assuming everything goes well, the girls will be home for good following the operation.  Molly will still be on "mask" precautions until about the end of January.
-craig   
 

Journal entry by Kelly Gorczyca

Just received this email from Mollys head nurse!! Happy NEW Year!! 

Sooooo freakin happy!!!  Keep the good news coming!!  Wahoooooo! 


Hi,

Great to see you both yesterday. Molly’s marrow here is negative for leukemia. This is the look under the microscope. We are still waiting for MRD and engraftment studies to come back. Have a nice New Years!

 

Anne

 

Anne Wohlschlaeger, CRNP

Nurse Practitioner

The Children's Hospital of Philadelphia

Journal entry by Kelly Gorczyca

An early Happy New Year to everyone! 🎉 🍾 We look forward to moving into the New Year with an emphasis on “New”.   At the top of the Gorczyca list of things we are grateful for in 2020 are Molly’s NEW and improved immune system and Tyler’s super cells that made it happen! 🎗💪.  Next on the list is all of you who have walked this Detour with us! ❤️
2020 will be about gratitude and celebration for sure! 
We have added a few new “last times we have to do that ” to our list.  Yesterday Molly had her bone marrow aspiration done ✅.   Now we wait for results.  We should get the first of the results about any unfriendlies (AML cells) in a few days.  Next, in a week or so, will be the genetic analysis results.  They are checking for the presence of the FLT3 gene mutation.  A quick review:   Molly had that  mutation causing leukemia cells to grow and multiply more rapidly and also slowed the good cell growth. The FLT3 gene is a gene found in healthy blood cells that helps them develop but in AML, mutations in the FLT3 gene making it a friend of the unfriendlies so its on our uninvited list.  
If FLT3 mutation is present they are looking to do an oral prophylactic chemo drug that goes after the FLT3.  We were on it in round one and two called Midostaurin (smells like skunk, tastes really yucky) or an alternate one called Gillibrand.   Will cross that bridge when it comes.  
Molly had her last dressing change ✅.  
We are set to go back Tuesday January 7th for CT scans and echocardiogram (both baseline if she has to go on oral chemo medicine).  Then Wednesday the 8th she will get her Broviac removed and we come home to stay!! Woot woot🤸! It will be the last time she goes under anesthesia...Safe to say she will miss her sedation power naps 😴😀! 
We have til the end of January for mask precautions 😷 then we are free of masks.  I know she will be happy to check that one off!
A lot of 🤞🤞🤞🤞🤞 and 🙏🙏🙏🙏 as we wait on the results so we can put “ last night staying in Philly” on our list with a big ✔️
LPP ❤️

Journal entry by Kelly Gorczyca

Hello everyone!!  I imagine you are all chomping at the bit to hear about our adventures in our new place at Ronald McDonald house!!  Well it has been full of ........



Yup that about sums it up!  We have been doin a whole lot of nadda!! it is surprisingly difficult to do and actually quite exhausting. 

RMH is beautiful and the rooms are super nice and the people are wonderfully friendly! Unfortunately we are on the second floor which is the isolation ward and although we are allowed to go outside for walks mother nature did not receive the memo and has not cooperated.   Molly is doing phenomenal...she has the most platelets she has ever had, coming in at a whopping 100 and an ANC over 3000!   For being so good this Bone marrow season we were granted permission to come home for Christmas!!  The docs haven't seen two bigger smiles than the ones we had walking out that day.

As it stands right now Molly will go in for her final bone marrow test on Dec 30.  We should receive the results at the end of that week and will be scheduled the beginning of the following week to have her Broviac removed.  The doc said we could leave that day for home....DO NOT have to tell us twice. 😃cars already packed!! 😃  We will be on the same mask precautions til the end of the month with limited visitors and no crowded public places.  Starting February she does not have to wear a mask and we can start to venture out.  They recommend keeping it limited still since it is flu season.  Honestly just to be home will be great!

Fun story...Molly met a gentlemen, Ryan, who plays Basketball at ESU that was diagnosed with the same cancer at almost the exact same time.  Social media enabled her to reach out and introduce herself and they have been keeping in touch, sharing stories. We were able to catch up for a quick hello this past week.  They are a beautiful family and it has been nice to have someone with the same path to talk to.  All of you have been amazing keeping us in your prayers and good energy to help Molly, Please add him to your prayers so we can watch both of these young athletes get back to their dreams!!! 

We are getting there!
Christmas is 5 days away and I know we are counting them down.  Enjoy each and every one of them!  Remember to pause, breathe and take in moments of Christmas magic along the way, those are the moments that become our memories!
LPP


  
 

Journal entry by Craig Gorczyca

The journey has started. We are in day 3 down the AML (Leukemia) road.  I guess these roads aren't expected, nor can they be predicted.  However, this is Molly's detour and the convoy is big and strong behind her.  After a quick stop at Cooper Hospital, she is under great care here at the Children's Hospital of Philadelphia (CHOP).  After getting acclimated and going through a million tests the first two days, the plumbing went in this morning and chemo is expected to start this evening.  The game plan is 4-5 rounds of treatment.  Each round is approx 25 days.  The first ten days is chemo and the other 15 is for recoup.  That is followed by 7-10 days at home.  Obviously the plan can change but that is the map we've been given.    
Molly’s Story

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