Back in PA
Posted Jan 13, 2021 by Jeanne Nindl
We bit the bullet and arrived back in PA! We are doing all sorts of social distancing even in our own home and trying to make it all work.
You don’t realize the things you missed until you have them again. (A yard, stairs, more than 3 rooms, the ability to see your family and reach out and touch them).
If you only could have seen us in our car. We were jammed pack, Cooper with a tiny spot in the back thankfully buffered by pillows and blankets. Just an occasional bag or two fell against him with some of the corners mom took. 😱 in the 11.5 hour drive.
So pleased to come home to a touch of the holidays with the house still decorated inside and outside (thank you and thank you again!)
Back to my earlier thought you also don’t realize how much there is to do with your home until your back again too 🤣
Amazing how the older kids have been doing on the home front. So proud of them all as we 100% know it’s not easy! Trying to support each other, maintain work and school (virtual school 😱) manage a house and handle this curveball and try to live the day to day life. Thankfully they too have had support, friends, our friends, the community, family, which all includes so many of you!
This break at home will hopefully be full of rest, recovery, preparation, rejuvenation, socially distanced visits and tons of fun!!
Our love ❤️ 💙!!
Ps.....notice the cooler on the front porch picture the meals have been an amazing support!! There are new things the family has tried and enjoyed. I’ve heard raves too (they are so in trouble when it’s back to mom’s home cooking). Also you can spy Cooper’s awesome tournament team baseball blanket on the huge chair Santa had waiting.
Posted Jan 6, 2021 by Jeanne Nindl
The attached photo is the mask you receive when you finish radiation treatments.
This is the mask that was fitted to and made specifically for Cooper. It’s his second as I know they made him a new one for his non-sedated treatments as he explained the other was a little big and his mouth had to be open a bit to fit comfortably.
Generally on your last day of radiation you receive balloons too (but they were out of helium yesterday). We had already celebrated graduating from sedated to non-sedated radiation a few weeks ago with the nurses and with confetti so he didn’t feel let down.
It was very sweet that when we were walking back to our car an older boy walking in for appointments called over and said congratulations to Cooper 💕. We also crossed paths with a 19 year old boy (college student in shorts) in a waiting room earlier who had been a patient since 9 too. There aren’t signs or ways to know everyone’s diagnoses and specific molecular breakdowns but their presence as a possible path forward are encouraging.
There are patients that you can see with your patient’s same scars and sitting in the same waiting areas that you feel a definite kindred spirit with. Covid has changed a lot that happens here just like everywhere else in the world.
Here we are all tested weekly to be sure we haven’t contracted the virus.
With the spike in covid cases we are going to slowly make our return to PA and be as cautious and conscientious as possible. We will be driving and have no plans to be anywhere for an extended period of time.
We asked our clinic personnel how to prepare for Cooper’s interactions and they provide the same advice given to all of us run through the screenings with everyone, mask, wash hands and playing outside 6 feet apart is best.
Upon leaving that appointment Cooper said “mom you are not having a screening table at home and handing out stickers.”
We know people are taking all the right precautions and still acquiring covid so it’s a tough leap of faith to leave our “bubble”.
Our goals over break remain the same: rest, recover, eat and take medicine to prepare for our next treatments.
Change of plans
Posted Jan 5, 2021 by Pam Leibensperger
I am sorry to be the bearer of bad news, but the Nindls are not returning home tomorrow. Cooper is doing GREAT but they had an unforeseen circumstance and will likely stay there for seven more days. The welcome home parade is being postponed. NO parade this Satuday at 3pm.
Posted Dec 31, 2020 by Jeanne Nindl
It’s so hard to believe Cooper only has a couple radiation therapy treatments left before we get our highly desired break back home. He’s handled them all so well! I don’t think we could describe what a change it’s been for him to be able to have his boost treatments without sedation. He walks in for his treatment and then walks back out to the waiting area after treatment like nothing major happened. Then he works hard at physical and occupational therapies.
It’s so him that he asks to use the heaviest weights and wants to win everything he does 🤣😂. His therapists seem to really know and appreciate him too.
One of my favorite moments was when his school teacher said she had a long day and was getting ready to start with her next student and was so happy to see that student was Cooper because he’s always so cute and happy.
The holiday week was a wonderful time doing regular things, spending time with our family, playing games and celebrating Christmas! We are truly lucky.
Highlights were taking Spooky to the dog park, exploring a park, playing capture the flag, tossing a football, getting a socially distanced family picture with Santa, leaving the kids all together to hangout and do cool (not parenty) things, opening and playing with the Christmas gifts and visiting Memphis outdoor sites.
We appreciate all the cards, packages and messages that have been sent for Cooper. The mail system at our apartment is entertaining and it’s an experience retrieving packages. The postal mail seems to be delayed which we aren’t complaining about because we tend to have something new to retrieve every day due to it. Cooper’s probably received close to 50 holiday cards from friends, acquaintances, friends of friends, all sorts of relatives and complete strangers. It’s been cool to see the stamps and addresses from which they have been sent. Cooper let me know that reading a letter from the Patriots and Kraft family was the first to bring tears to his eyes. 💕. Funny because talking directly to Mr. Kraft and being compared to Julian Edelman left him full of smiles.
We feel the support of all of you and appreciate the kindness!!!!
Our observation of Cooper and how he handles this whole experience is it’s just another thing that you deal with in your day or life.
We feel excited to be returning home for our break with the goal of keeping Cooper eating and taking his medicines so his body is ready to take on the challenge for his next treatments. Looking into what that might look like is scary but we believe knowledge is power. We can deal with it because we choose to be positive.
We are thankful for 2020 and to get through the year but we are ready to see what 2021 right around the corner will bring.
Let’s go 2021! Best wishes for health and happiness for everyone! ❤️💙💪
The journey continues
Posted Dec 18, 2020 by Jeanne Nindl
Cooper has been meeting all his OT and PT goals and setting new ones and we are really impressed with his one month progression. It’s funny what you see with your own eyes but can appreciate a little more when there is data to support it (I guess Brad has rubbed off on me that way).
Speaking of the data his various numbers are making the doctors happy. Those that are low or out of range are to be expected due to the treatments and are trending in a good way for now.
My guess is that Cooper’s least favorite things are the medicines and the “pokes’. In fact a school assignment was to answer when do you feel like a Grinch, Cooper answered when he gets poked. Both of these seem to be feeling like they are getting old instead of just regular. Hopefully that will change because there will be more of that to come.
He was so happy to discover grape flavor to smell while having his ivs flushed and being sedated. Just today Cooper is transitioning to non sedated treatments; we are looking forward to all the positives with this change (including shorter treatments, less appointments, no sedation medicines, more free time, and the ability to eat whenever you want)
Cooper has school here and he really likes his teacher. His assignments and PR assignments haven’t elicited many complaints and he’s had homework too. It’s amazing how long and packed full his days have been and how appreciative he’s been of those days when he’s been able to be home before 3:00.
Moments I’ve loved have been overhearing him playing with friends from all different areas of his life over the Xbox or on his computer, hearing him laugh, see his smirk, his eyes twinkle, and his roasting us especially after he beats us in another game. The sounds take me back and remind me of how life was back in early October.
It is so sobering to remember what a difference 1 day made in Cooper’s life; never would we have imagined the symptoms from that day would bring us to where we are today. On October 27th after his 1st surgery we likely had no idea that he could neurocognitively and in motor control and strength made the improvements he has to date.
It’s hard not to consider and guess what will happen in the months to come in his treatment. We’ve been told some things we can expect which sound alarming to us but the professionals and weathered families talk about nonchalantly.
It’s a good reason to return to our positive day by day approach. Also makes us appreciate that when Cooper’s feeling good than our days are good!
So many people keep demonstrating their care and support for Cooper and our family. We have been so lucky that many of you continue to do huge and small things for which we will be equally and forever grateful. Kindness always brings tears to my eyes. I think happy tears are better.
Warmest wishes from our full hearts! ❤️💙
Meals are NOW available
Posted Dec 13, 2020 by Pam Leibensperger
Thanks for signing up to provide a meal. Meals were cancelled after December 18 as the Nindl family will be joining Cooper in TN to celebrate Christmas. Many of you were looking to help so now dates are available in the new year.
Wishing you happy holidays!!
I/2 way to our break feeling the holidays!
Posted Dec 9, 2020 by Jeanne Nindl
Week 3 of radiation and all seems good. Multiple times this week Cooper has proclaimed he’s all better and should go home. We are glad that he is feeling so well but we know there is more work to be done. At each appointment it’s so easy to see how competitive and what a hard worker Cooper is. He’s not afraid to work hard or to answer questions honestly. Most days he has appointments from 7:00-3:00. We have been doing our best to get into the holiday spirit especially knowing we are celebrating here and I think it’s working. Hope everyone is getting in the holiday spirit as well⛄️🎄!❤️💙
Thanks for embracing our family!
Posted Dec 5, 2020 by Jeanne Nindl
We are settled in our apartment and with a week under our belt we are used to the routine. I think we all like it. The building we live in is very cool and it reminds me of some place hipster yuppies would live. 🤣
Cooper is getting great care at St Jude and we are getting to know all the staff here; it’s huge to be around kind people who you feel are really getting to know and love him as much as we all do. We’ve been amazed by his improvements with his balance and coordination but when we see and hear the other specialists being as equally impressed we can know it’s not our parent goggles.
I was nervous when he started to experience some of the short term effects of radiation to see how he would handle it but he stepped up in usual calm demeanor and let me know he’s been shedding more than Spooky and has lost more hair than Brad has had in the last 3 years.
I also want to let you all know how huge it is to feel your support. Our family in PA is ever present in our minds and concerns and we appreciate how huge this weighs on their hearts and shoulders. I truly believe we would not be as comfortable here if they all were not supporting each other and being so embraced by you all. 🤗
Every meal they have received has been huge; when We are home in January they may be requesting some new meals — I might have to reach out for recipes. Although I’m not going to lie cooking is not one of my top mom skills.
We are almost to the half way mark of our first portion of treatment and still feeling the love and positivity. Wishing you all the best!! ❤️💙!!
Posted Nov 27, 2020 by Jeanne Nindl
Ok I just finished crying the happiest tears; I was in the living room area of our room when Cooper comes walking past me all by himself!!!!!
For the 2nd time in a month I felt like you could have knocked me over with a feather.
The past 2 days have been his first pain free days and he has seemed so strong so it shouldn’t have been a surprise.
Brad, Cooper and I had a very nice traditional Thanksgiving with Turkey, ham, mashed potatoes, corn, and rolls too. We went for a walk and visited with our family through Group FaceTime and were able to visit with some neighbors too.
This Thanksgiving we literally feel like we are thankful for everything and everyone!! Our family, PIne Richland, Gibsonia, Treesdale, Oak Park friends, neighbors and people we are yet to know, the Northern Regional Police Department, local businesses, friends and family of friends, co-workers of family and friends, our PRYBSA family and friends, Pitt family and friends, UPMC employees, St Jude employees, anyone with a friendly face, the families of kids who have had similar experiences that opened their hearts and shared their stories!!
We will never forget the support we have received and will always want to reflect and share the same support and kindness with others!!
We wish that everyone else had as memorable a Thanksgiving with such happy moments!
Strength during twists and turns
Posted Nov 23, 2020 by Jeanne Nindl
This path forward is not going to be straight and easy. There are a ton of bumps, twists, and turns we are facing daily. We are no sooner excited about a path or positive outcome when we get hit with another obstacle. (Another surgery at the local Children’s Hospital by a fantastic neurosurgeon happened this weekend but we are back and seem to be no worse for the wear) Cooper has been able to meet them all but it’s totally unfair how much he has had to go through and the battles he’ll have before him.
So much is invisible to us that we just will not know until we know.
You may not know I enjoy my swear words at times and I do feel like yelling 2020 sucks and so does Cancer but there are more times that I’m so happy and appreciative of the little things! Thanks for sharing your strength, reminding us of ours and Cooper’s too!
1st Day of No Appointments = Family Fun
Posted Nov 15, 2020 by Jeanne Nindl
Yesterday was Cooper’s 1st day with no appointments since being in Memphis so we decided to take advantage of this and the weather and head to the zoo! It was so nice!
Originally we had no appointments on Monday but now we are packed full as midweek we’ll be starting to receive what was described to Cooper as “invisible medicine” - radiation.
So hopeful the “invisible medicine“ can follow the Patriot way and do its job!! ❤️💙
Peace of Mind in PA and TN
Posted Nov 12, 2020 by Jeanne Nindl
It brings such Peace of mind to hear from our friends and community supporting Cooper and our family back at home. (We’ve been able to share your individual video messages and a really cool Group YouTube video that our friends at Pitt put together!!)
In TN, we were over joyed to learn Cooper will not need an additional surgery before radiation and chemotherapy.
We can’t express how much it means that Cooper’s siblings are being taken care of with their social, emotional and health being considered. It makes it a lot easier to be here and be present for all our appointments and any down time; which there hasn’t been a ton of.
However, this afternoon Brad, Cooper and I actually enjoyed playing Farkle and Hangman. I wouldn’t have been any happier even if I hadn’t been the winner. 😊
Wishing you all peace and love! ❤️💙
Busy and Appreciative
Posted Nov 11, 2020 by Jeanne Nindl
Wow! We have been so busy since arriving here at St. Jude. We have had lots of appointments and tests. We have been so in awe of how Cooper has been handling it all and so nonchalantly. We would have thought it was just us until today when he had a 2 hour MRI and chose to have it done without sedation. He was absolutely sure he could spend the entire time without moving (if he hadn't we would have delayed our entire day tomorrow and mess up our schedule which is a crazy puzzle as it is). Upon completion, the team presented him with a poster saying Way to Go and then his nurse practitioner told us he was the youngest patient she ever had that was able to do that!!
We have been very happy here and have enjoyed being able to walk to and from our appointments to our room each day.
We also continue to be in awe of the outreach and support through acts, gifts and gestures from all of you! Thank you, thank you, and thank you.
Posted Nov 8, 2020 by Jeanne Nindl
We made it to Memphis! Sigh of relief!!
Traveling went well and all the transportation helpers with the wheelchair were so good and got us through the airport and on and off planes without much hassle.
We asked our shuttle driver about Memphis and she shared the 2 highlights are Elvis and the Bass Pro Shop. 🤣 Stay tuned.
Thanks for your prayers, positivity and support!! ❤️💙 💕
Time to Rest and rejuvenate at home
Posted Nov 6, 2020 by Jeanne Nindl
Yesterday evening we were able to come home from the hospital so that Cooper could rest and rejuvenate with his siblings and family. Within 5 minutes of being home we were so pleased with our decision!!
The last 10 days were a whirlwind, roller coaster with lots of thinking and decisions. It is so nice to come to peace with your decision and be happy to be heading this weekend to St. Judes!
We can’t express how thankful we are to all of you who are reading this update, those who have supported our family that were in our home, those that smiled at us when we cried tears of fear, sadness, and joy, all the neurosurgeons, doctors, radiologists, technicians, therapists, nurses, aides, maintenance, receptionists, food service workers and just everyone at UPMC!
Let’s go! With love ❤️ 💙 !!
Posted Nov 2, 2020 by Jeanne Nindl
These last couple of days it’s all about the mission of recovery for Cooper from surgery getting stronger, eating more and doing more.
The rest of us (surgeons, doctors, nurses, therapists, mom and dad) is the mission of managing his pain to aid in recovery.
This morning I was talking with Cooper and letting him know how hard he is working and likely doesn’t realize it. We are beyond excited and full of pride every time he sits up, holds his head straight, stands up, tosses a ball, shoots his nerf gun, and eats!
He’s making us nervous at times the ways he throws himself into starting moving on his own and how fast he does it.
Also his strength to block and push away medicines, spoons, and hands in the middle of the night has been impressive too.
The nurses and doctors mention frequently that he must have been very athletic and active before coming here. I always say they can’t imagine!
Positive Steps Continue
Posted Oct 31, 2020 by Jeanne Nindl
Happy Halloween! Not our typical Trick or Treating day.
First the Tricks - Cooper continued to make strides sitting up and standing. He took time to use his nerf gun to aim at his Dad, his neurosurgeon, and Captain America’s balloon shield (he hit them all 😂).
Treats - he started the day eating puréed French toast ( that should be under the tricks) and finished with Dairy Queen Oreo Blizzard and Panera mac n cheese.
I had the opportunity to spend time at home and truly appreciate our neighbors and family again. So many kind gestures and support.
Topped off by the crew, I’ll call Cooper’s Trooper’s, who were walking through the hood attaching red and blue Balloons 🎈
Power of Positivity!!
Hanging in There
Posted Oct 30, 2020 by Jeanne Nindl
Thanks Oak Park friends! We all know there was a lot of monkey business in the hood. 🍌
Cooper’ out of the ICU
Posted Oct 30, 2020 by Jeanne Nindl
Thanks everyone for your support last evening Cooper was able to leave the ICU. 🤩.
We were told to expect another day or two there but the surgeons were so pleased with how his body was handling the surgery he was released to the pediatric floor. Now we all get to focus on his 1b step recovery from the surgery.
I had a chance to stop home yesterday to be with our family and was so happy to see them all and hear their stories of the support and love they’ve been receiving from you all!! 💕
Also just knowing that there is this group thinking, praying and sending positive vibes for Cooper gives us strength and hope!
He has been fearless!
Thank you! Thank you! Thank you!!