We went to Chicago last week for Luke's 6th month follow up MRI and Dr visits. His MRI showed no new lesions and some lesions are even shrinking.
Both doctors were very pleased with Luke's progress. They did remind us how important this 1st year of recovery is after HSCT and that he will not get the full affects for 5 years. It will just be constant improvement as long as he does not get any infections.
All his blood work came back good and even his EDSS score lowered. The trip itself was exhausting for Luke and when we returned home Bären did not let Luke out of his sight.
We go back in September for his 1 year anniversary check up.
Dec 10, 2016
This will be my last update for 2016. I wanted to do it on the 6th, because that was Luke's 3 month mark from his HSCT, but life is still crazy busy here and I missed it.
Luke just was not doing well at PT. Seemed like a waste of time. So his nurse and I had a long talk on how to get him up and moving, along with what to do about his depression. Though technically he is not suppose to be around new or strange pets, we decided that the pros out weighed the cons on him getting his own dog.
I prayed so hard about this, because a dog coming into this house had to get along with Jax (Irish Wolfhound the size of a small pony) and 5 cats. Well on November 11th we went to the local shelter with Jax in tow, to look at a boxer/lab mix and she was not right. Long story short, Luke picked a wonderful Australian Blue Healer cattle dog (even has the partial blue eye). Sadly someone lost a wonderful dog, Luke's gain!
His name is Baren (German for bear). He has become Luke's best friend. They are together all the time. Baren has learned quickly the cats are off limits haha, and he and Jax are becoming buddies. But best of all he has helped with Luke's depression and is getting Luke up and moving. Baren will play fetch forever if allowed to, is well trained on or off a leash and is now very protective of Luke. So when Luke starts the transition to living alone again, I feel much better knowing that Baren will be there to help.
So though Luke is not doing as well as he was after first being released from the hospital (all normal), he is at least still out of the wheelchair, sight is improved (not sure how much) and his cognitive abilities are returning.
Please continue to pray about his SSDI, which now has been moved to July 2017.
I hope everyone has a very Merry Christmas and a Happy and Healthy New Year. Again thank you for all your support. Its been a tough few years, but I know good things are on there way!
Photos of he and Baren in the files!
Nov 04, 2016
Two months from transplant 11/6/16. I have not done an update in awhile, not sure anyone is even following at this point. BUT in case they are I wanted to share how Luke is doing.
This has been...
Oct 07, 2016
So it has been one month since Luke received his stem cells and 2 weeks since coming home. So far so good. Besides PT, Lab draws every Monday and Dr appointments, he has stayed home. We are trying...
Oct 03, 2016
I have been sick & staying away from Luke. Trying not to get him sick, so staying in my room.
As soon as I feel better will send out an update on Luke.
Sep 22, 2016
FYI...TO ALL THOSE WHO DONATED TO LUKE'S PAGE, IT IS TAX DEDUCTIBLE!!
Sep 21, 2016
At first we thought these were funny, but soon they became very painful.
Sep 20, 2016
Sep 17, 2016
We are home. Luke had a lot of bone pain the last 24 hours of his stay, but on Friday the 16th of September, Andrew drove up to get us. Oh to sleep in our beds last night was wonderful.
Sep 15, 2016
Day 15 or +9. My updates will be shorter as my hard-drive on my laptop is going, so all of this has to be done on my phone.
Luke's platelets are 24, so above 20. He is no longer 0 on his cells,...
Sep 14, 2016
More platelets, more saline IV's. We are both tired and so ready to go home to start the last faze of this journey to get Luke stronger.
He walked a 1/4 of a mile and I met a friend for coffee....
Sep 13, 2016
Day #13 in the hospital or +7. Luke had to have 2 more bags of platelets, one late in the evening and then again early this morning.
He did meet with PT late yesterday and he needs to walk...
Sep 12, 2016
Today is day 12 or +6. Yesterday was 911 and I did not feel like doing an update.
Dr. Burt did come in yesterday and was very concerned with Luke's platelet level. He also keeps failing his...
Sep 10, 2016
Today is day 10 or +4. Never got a chance to update yesterday. Luke had to have a platelet infusion, because his counts dropped too low. We have not gotten today's counts yet, but he is about 3...
Sep 08, 2016
Second Update for today: Luke failed his orthostatic test.
Orthostatic hypotension — also called postural hypotension — is a form of low blood pressure that happens when you stand up from...
Sep 08, 2016
*Oh What a Night, late September back in '16* What happens when you get NO sleep for a week, you think you can sing!!!
Today is day 8, or +2. So last night, thinking we had fixed the A/C...
Sep 07, 2016
Yesterday was the Stem Cell Transplant and day 0, but unfortunately words cannot begin to express how touching it was. Andrew could not come up to be here and so I streamed it live on my Facebook...
Sep 05, 2016
Well today is day -1 or the 5th day of being here. Tomorrow is the big day! We actually both got a decent nights sleep, Luke slept from 6 to 6 and I got in 7 hours.Yeah!
We have already had a...
Sep 04, 2016
Oh boy, what a day! Not sure what all to tell. Luke did not take his Compazine last night, because he wanted to be awake when Dr. Burt came in. Well he was awake well before...ugh! So I did not get...
Sep 03, 2016
Well today is Saturday, September 3rd or as the hospital calls it day-3 (or the start of our 3rd day). I can't believe that tomorrow will be his last Chemo on day -4, just 2 more bags.
Sep 02, 2016
Today is officially -4 in HSCT terms, but day 2 for us. Luke had his PICC line inserted into his arm on 8/31, then was admitted his room #1693 yesterday morning.
They started him on so many...
Aug 25, 2016
Many have asked about sending Luke something while he is in the hospital. He CANNOT have fresh flowers, latex balloons, fruit. He CAN have mylar balloons and cards.
Again I thank everyone who...
Aug 12, 2016
We have been home about 10 days, Luke looks like he has been to Hell and back. He is loosing his hair and his beard looks thin. I think in total he has lost 60 pounds. He is down to 170 and was...