Today is my dad’s birthday, and he turned a whopping 49 years old. Never would I have thought we would have to encounter these kinds of medical battles at this young of age, but his youth is persevering and pushing him through the fight. Today I got an update that he spent 20 minutes standing up on his feet assisted by a harness. This is the first time he’s been on his feet since surgery! Progress is slow but happening! From what I hear he’s determined to regain his strength and is working extra hard during physical therapy to get all the exercise he can get. Good friends have been visiting and keeping him company, and I can tell that’s really helping keep his spirits up. Thank you all for the positive comments, they mean a lot!
After all of this I know we’ll never take another birthday for granted. Happy birthday dad!
Kreg said to me yesterday. “I think I know why my mind is so clear and I’m talking so much. I have a new lease on life!”
Kreg and I have been so fortunate to be in this incredible hospital with these wonderful people. We look forward to seeing the sun rise every morning. This study has been stretched so wide, leaving no stone or cell unturned. The brain capacity into Kreg’s condition is as big as his courage. We are so grateful to everyone that has supported us in every way.
He continues to bypass that horrible nerve pain from the first week and is participating in as much PT and OT as they can bring. He has made it to the recliner and is enjoying having his feet flat on the floor, a big part of recovery. I just hope he doesn’t get too attached to that recliner- not in our house…..
He has big physical gains, is tapering off the meds and is full steam ahead on the charm. He’s advising all the nursing students on the basic principals of a close shave.
We have many more days in Boston, that’s for sure but a repeat MRI shows decreased inflammation, yay!, and the chest xray is clear. Kreg is going win this race! Thanks for all the support, the favors, the prayers and the love. We appreciate them all.
Those stem cells will be playing hard soon. We will keep you informed!
Kreg had to undergo a second round of surgery on Thursday. Hopefully this time everything goes as planned.
Wednesday, April 16 ,
The doctors realized something was not right as Kreg was in an abnormal amount of pain. He was also showing diminishing strength in his legs and complete lack of mobility, so the doctors sent him in for an MRI. They found great inflammation caused by the Stem Cell procedure and determined there needed to be an intervention. Surgery would be required to go back into the incision site and a insert a spine graft to expand the dura around the cord to allow the inflammation room to run its course. They took fascia from a second surgery site, his lower back, and inserted it into the first surgery site. They also hit him with a huge dose of steroids to help quell the inflammation and protect those little stem cells.
They wheeled him away at 10:30 am for a 3-4 hour surgery, which of course turned into a 6 and a half hour surgery. He came out of the OR and into the ICU in a load of pain and anger. Only after tons of pain meds and even more photos of dogs and gabby and Kyle, he settled down. And he started to heal, right in front of eyes.
Friday, April 18
Kreg still has pain but it’s surgical site pain. That’s the appropriate pain and manageable! The surgery was a success and the healing process is amazing. We watched him just rejuvenate , like the lovely Spring outside.
Saturday, April 19
Mobility is his new objective. pt is waiting for the ok from the surgeon to work on sitting up. He’s got plenty of healing to do.
Sunday, April 20
After a long and sleepless night, Kreg is finally resting. He spent the night coughing a lot and an X-Ray was ordered immediately. The results showed some fluid in one of his lower lungs, which happens to patients every now and then. He’ll be treated with an antibiotic so that it doesn’t get infected. He’s now being inspected for infectious disease in his spine and will be partaking in multiple studies regarding his spinal fluid. Things are tough and exhausting here. Please keep hoping for the best.
CP and Kreg’s dad Andy
Kyle and I took off from Boston early sunday morning and since then I’ve had to write a paper and take my final exam, so I apologize for the lack of updates. My mom is without a computer, so she’s trying to relay the latest news to me to post.
Recovery is proving much more daunting than anybody expected. Pain management is crucial right now as dad is experiencing more pain than expected. The surgery went perfectly, but they believe the inflammation is what’s causing his immobility. Dad is completely exhausted from aggressive physical therapy, followed by occupational therapy, followed by more physical therapy… His biggest accomplishment yet was sitting up on the edge of his bed with his feet on the floor. The days seem hard and long but he’s coping well. As my mom says, he’s become quite “charming”, befriending everybody who comes into his room. She says they have met some of the most wonderful, interesting, intelligent and giving people from all over the world and they are taking such good care of all of us.
At this point no one is sure when my parents will be headed home. For now it’s best he’s in the hands of MGH, and hopefully they can get the pain down and get him back to baseline. This is a big experiment and hopefully we are just paving the road toward success.
We’ll try to keep y’all up to speed on the rest of recovery!
what we need is pug therapy
Love from cousin Elle!
Day two of recovery is going well! Late last night they solved some of the problems associated with the aggravating pain dad was experiencing, so today has gone a lot smoother! His pain levels have decreased and he’s much more talkative today. Mom and I ventured to the parking garage and pulled out a bathtub-sized gift basket from the back seat. It was so heavy we had to plop it in a wheelchair and wheel it up to the room. THANK YOU to everyone who put this together, we have enough goodies and snacks to sustain us for weeks! Everything from the Burt’s Bees (which I just slathered on his lips) to the yoga mat are greatly appreciated. We may also have to jeopardize our hospital stay by breaking out those bottles of wine and beer tonight.
As if the gift basket wasn’t enough, we were graced with a surprise visit from our other two family members! Our dog sitter (and life saver) Dawn brought Olive and Nelly to come see us, along with their friends and siblings! Kyle and I were thrilled to see them, and they were just as happy to see us. It took all the restraint I had to not sneak them into the hospital to see dad, but they probably would’ve torn the building down.
These two gestures encompass the immaculate support we are blessed with from all of our friends, family, and community. It’s not just the doctors and the nurses, it’s all of you that make this happen. We really, really appreciate it!
That’s her happy face
Now we’re just in the hospital room watching the Masters, and it appears dad is doing well as he’s insulted a few players and the disagreement with my grandfather and brother is plentiful. Good sign that things are getting back to normal!
It’s been a long day of recovery and we’re all feeling weary and a bit delirious. Dad was moved from ICU but also had to move from bed to bed and had a lot of discomfort today. It was a restless and uncomfortable day for him, and you can see him fighting the pain. Because of ALS he can’t be given high doses of pain medication or muscle relaxants as they could cause breathing complications. Today was filled with a lot of pain and some muscle spasms in his legs. His room is a flurry of doctors and nurses poking and prodding him, asking questions and providing explanations. He is exhausted and so are we. It’s really hard to watch him writhe in bed visibly tortured by the pain from his incision. But he is being so incredibly tough and trying not to show it as he talks to everyone who comes in the room. The next few days are going to be hard for all of us but we keep reminding ourselves why we had this surgery. Hopefully the pain decreases and he can get comfortable and get some sleep.
It was a long and sleepless night in intensive care, but dad is doing okay! Besides the tremendous amounts of pain, he is passing all the other tests with flying colors. He is able to breathe well, communicate, open his eyes, flex his feet, and provide sarcastic answers to their attentiveness questions. He just got moved out of intensive care and out onto the regular floor, which is a great sign. He is still experiencing a lot of pain and discomfort, which makes sense because he has a massive incision in the back of his head running down along his spine and is missing three of his bones. They had to shave the lower half of his head, so it’s going to be interesting to see how he styles this particular recovery. Those of you who knew him as ‘wig’ in junior high will understand the importance of his hair. I told him he should shave it all off and go for the Heisenberg look. Will keep everyone posted on that aspect as well. Thanks for all the love, I’ve been showing him pictures and reading him some of your comments and he smiles and laughs at some of them. When I last saw him he was eating yogurt and sipping cranberry juice with a straw. Hopefully soon we can swap out juice for a beer, because God knows we could all go for one of those right now!
The intensive care floor
It has been a LONG day but I’m thrilled to report that everything is going smoothly! The entire surgery took about 8 hours, during which they used a diamond cutter to get to his spinal cord and then stuck him with 20 injections of stem cells. Dad no longer has three of his upper vertebrae but instead has a couple million stem cells making their way through his nervous system. Crazy.
When we first saw him fresh out of surgery he was clearly in a lot of pain and still really groggy from all the drugs and anesthesia. That was about 3 hours ago and I’m with him now and he has visibly improved. He is definitely still in a lot of pain, but is evidently making his way toward recovery. I read a lot of your comments to him and he showed a little smile listening to what everyone had to say, so thank you guys so much for reaching out. All of a sudden the magnitude of the situation hit me today and I can’t help but feel incredibly lucky for so many reasons. We are all so lucky that we were in the right place at the right time for this surgery. We’re lucky my mom is so damn organized and strong, because she’s really the superhero behind all of this. We’re lucky dad is so courageous and tough to bear the pain and uncertainty of this experimental surgery. And we’re also so incredibly lucky to have such outstanding friends and family in our lives. Your words of encouragement gave us confidence to make it through the day. Your gifts kept us entertained and well fed during a 12 hour day in the waiting room. And your humor allowed us to keep our sanity during such a hectic time.
Palko Strong love from the Floyds
Positive vibes from the East Bay Surgery Center family!
Dad is spending the night in intensive care, and I’m cozied up in a nice leather armchair right next to him for the night. The doctors and nurses have been tremendous, and during our brief conversation just a few minutes ago, dad muttered “this is the best hospital in the world”.
Everyone (including ourselves) wants to know when he’ll be out of the hospital, how long recovery is, what results are expected, etc. I wish we could provide answers, however he is only the second trial in this study, so he’s really just a guinea pig in this whole experiment. The doctors and the researchers conducting the study don’t have answers to those questions. They’re watching him to deduce those answers. They estimate he’ll be hospitalized for 4-7 days, then are hoping to see some results in a month or two. And who knows what those results will entail. This disease has taken us on one hell of a journey, and hopefully these little cells will reverse our path and lead us to a much brighter destination.
He is fast asleep now and I’m exhausted myself, so I will let everyone know how he’s doing in the morning! Thank you again for everything you guys have done, you have no idea how much we appreciate it! Goodnight!
We’re still in the waiting room and haven’t seen him yet, but the nurse just swung by with some updates. She let us know that his vertebrae were removed perfectly and the stem cells have been injected and are still making their way. He is tolerating the surgery “beautifully” and everything looks great so far! Hopefully within the next hour the procedure will be done and we’ll get to see him before he heads into recovery. We’ll keep y’all posted! So far so good!
It’s a beautiful day for a stem cell transplant! The Palkos were up and at em this morning battling for the hotel bathroom to shower and get ready for our 7:30 am appointment. We arrived at Mass General to be greeted by a lot of young faces who all knew mom and dad. You could see the excitement in their eyes as they embraced dad and discussed the surgery. We were escorted upstairs where we had to say goodbye before he left to get dressed. Hugs and tears were prevalent as we separated.
He’s currently getting dressed and prepped and will go in for surgery any minute now. The procedure will take about 6-7 hours, with about 2+ hours of recovery before we can see him. We should be getting updates every now and then, and I’ll do my best to keep the blog as up to date as possible!
It’s a very exciting day and you can feel the positive energy throughout the building. Keep sending the prayers and the vibes, we can feel them!