So for the main updates on what has been happening.  Kate has continued iron infusions and it has helped gain some energy back.  Fatigue and stiffness/tightness has still been lingering from the chemo and surgery and a constant battle to stay ahead of it while getting the right mix of rest/exercise/life.  This is especially of concern now as Logan weighs 109 lbs and becoming very difficult to transition alone - even for me and I’ve been strength training for 2 years now to prepare.  Kate had her port removed, this was used for blood draws as well as chemo so she didn’t have to get an IV each time.  The port procedure was fairly simple but again left a sizable scar, another one to add to the list of battle wounds.  

Kate also started long term meds.  She’ll be on 3 separate long term meds for anywhere from 2-10 years.  The meds that she and her doctors agreed on are more aggressive than typically are prescribed at her age.  This is because of all the high risk factors that she has mainly because of the large size and the quantity of tumors that were removed.  So far she has started 2 of the 3 and the last one she’ll start next week.  As I briefly mentioned before all of the meds have side effects that we’ll be monitoring closely to make sure that the benefits she is getting from them is worth the quality of life impacts.  This is a hard realization and question to even ponder - is the % reduction in reoccurrence worth it to take a drug that could alter day to day for years?  Only time will tell and we ask specifically for prayers to limit side effects so we don’t have to ask ourselves this question.  So far main side effects has been intense fatigue, brain fog, amongst many others.  She just doesn’t feel like herself or have the energy like she used to - hard for a momma that just wants to be there for us all.

2nd surgery also needs to be scheduled.  Kate has a consult with plastics on Wednesday this week to go through the plan for this.  The second surgery is there to go in and fix and correct some of the issues the first surgery and chemo and radiation caused.  It will be significantly less invasive than the main surgery last year but still will cause her to have restrictions and time in the hospital and more pain and scars.  2nd surgery hopefully will be sometime in May - more to come on exact dates.  

Kate has been amazing, no surprise , and has a great attitude about it all.  Knowing 2023 was a “stop everything and heal” year we are hopeful 2024 will end with a different headline.  We are so grateful to have you all in our lives, we truly couldn’t have done it without all the prayers, bear hugs near and far, meals, kids activities, I could go on and on.

As for what is new for the family, there are a few things that we are very hopeful for and very much looking forward to.  The best news is that Logan was accepted into the Hope 3 Trial!!🙌. This is a clinical trial we have had our eyes on for a few years and Logan did meet the criteria!  He went through 2 days of testing and assessments as well as lots of phone calls/emails back and forth to get everything lined up.  A link to the trial information is here:  https://finance.yahoo.com/news/capricor-therapeutics-announces-continuation-phase-140000194.html 

He’ll need to go through physical assessments and infusions on back to back days once every three months at Lurie Children’s Downtown.  He’s been a rockstar despite all the pokes and needles and trips back and forth to see more doctors.

This month for Logan we also have a trip to Columbus to see their clinic team on Feb 13 and 14 and then he has another bone infusion later in February.  He handles it all so we’ll, so brave, and so sweet.  Just wants to know everything and be involved.  At 11 we are asking him more and more to be an active part and in his care decisions.  At an age appropriate level he gets to understand more about why we do things for him so he can become an advocate for himself as he starts to go into teenage years and adulthood.

Grace is the same sweet girl she’s always been, loves listening to Taylor Swift, making friends and participating on dance, tennis, soccer, and art.  She loves being Logan’s brother and is an amazing sister to him in so many ways.

Kate and I will be traveling to Washington DC in March for the PPMD Advocacy conference!  Kate has done this once before virtually.  It’s a 3 day event where we spend time on capital hill meeting with lawmakers - our congressmen and women to advocate for bills and appropriations that support those living with Duchenne and Becker muscular dystrophies.  We get the chance to tell our story and explain to them why their support is so important and over the years what actually makes a difference.  You can read more about this mission here: https://www.parentprojectmd.org/events/2023-advocacy-conference/

Oh and the most important of all👍we are looking forward to Logan’s Make-A-Wish trip April 20-26 at Disney World, Universal Studios, and SeaWorld!  He is so excited and cannot wait to Animal Kingdom!🦒🦓🦁😀. It will be the 4 of us in our family and Grandma Mar.  Very nervous about flying with his Permobile Wheelchar and praying for a safe flight for that too, it’s 450lbs!  That wheelchair is fit exactly to his body and not only is his legs, it helps prevent sores and pains that he gets with his smaller more “portable” wheelchair. 

In June we embark to Yellowstone National Park as soon as the kids are out of school.  This was the BIG trip that was canceled last year after everything happened.  We are very excited for this and plan to drive there instead of fly.  

Essentially summarizing all of this I’m realizing more updates are good for my soul, they bridge the gap between hard days and support is through the celebrations on good days.

Love you all, stay warm out there, (come faster spring!) and don’t be a stranger.😉

-Nick

P.S. - everyone needs a tortilla blanket!  Thanks Dave Moll!