LUKE NEEDS A LIFESAVING STEM CELL TRANSPLANT
Son of Andrew & Nancy Nelson, born in Fresno, CA, grew up in New York and now calls Stonington, IL, his home. Luke graduated from Taylorville High School in 2009, went to technical school, worked at Monsanto and Pro Shot, before getting a job as a Crane Operator and Apprentice Welder. Life was moving along and Luke had many hopes and dreams. He enjoyed hanging out with his friends, going to the movies, working out at the gym, bike riding with his sister on the trail to Pana, camping and hiking. Then, at twenty-three years old, life as he knew it drastically changed.
In September of 2014, Luke was rushed to the ER where he was admitted for ten days. It was there that an MRI showed Multiple Sclerosis. MS is an odd illness. Some people go through life and never know they have it, while others, like Luke, are hit hard and the disease completely destroys everything. In the past 18 months, the MS has spread and taken the sight in one eye and is trying to take the other. Luke currently needs a cane or walker to navigate short distances and relies on a wheelchair for longer ones. He has lost his job, can no longer drive a car, or even ride a bike, and hanging out with friends is just too physically exhausting. Luke had lost hope of ever getting better, as there is no cure for MS. His life has become a series of endless injections and other medications to try and control the pain and slow the spread of the lesions attacking his brain.
Hope was reborn when we read about a stem cell clinical trial at Northwestern University Hospital in Chicago. We immediately went there but were devastated to find that the lesions were now not only on Luke’s brain, but on his spine too. Luke was no longer eligible for the clinical trial because he now has Hydrocephalus (which is spinal fluid leaking into the lining of his skull, putting pressure on his brain.) The silver lining was that the doctor determined that the stem cell transplant was Luke’s only hope and agreed to take him on under a ‘Compassionate Care’ basis.
We are ready to take Luke to Chicago to begin treatment very soon but we need to raise about $20,000 to cover the many upcoming out-of-pocket expenses including travel and relocation to Chicago for several lengthy stays.
We have chosen to fundraise with HelpHOPELive in part because HelpHOPELive assures fiscal accountability of funds raised and tax deductibility for donors. Donors can be sure that funds donated will be used only to pay or reimburse medically-related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Donate Now button.
For more information, please contact HelpHOPELive at 800.642.8399.
If everything goes as planned, Luke will have the second birthday of his new life. This treatment should stop the MS and Luke will be able to live again, not just watch as the world passes by.
Andrew and Nancy Nelson
April 19, 2017
*APRIL 2017 APPOINTMENT*
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.
December 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!
November 4, 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 a tough couple months. Though he is still attempting PT, he has bad days and good days. It is not like you or I, these days are extreme. If he does anything one day (example he went to Walmart with me for the first time/only lasted a few minutes) and that night he went to sleep and slept 15 hours.
I think the e-mail from his nurse yesterday spoke volumes to explain what Luke is gong through, not only physically but mentally. She said that the equivalent would be to compare him having been deployed and returning home. The emotional trauma of what he has experienced is huge. She also stated the first six to eighteen months will be the most difficult and our philosophy of “taking one day at a time” is the only way to survive.
A funny story. Luke always had a place on his lip where his mustache hair never quite grew in. Well now that his hair is all coming back in (though he ever lost it all), that part is filling in and it looks great. Added bonus to the HSCT.
So for now Luke spends a lot of time taking short walks with our dog Jax, playing with the cats, sitting outside enjoying the Fall weather and reading on his Kindle.
Please keep the prayers coming and again we thank all that have supported him and us in so many ways.
October 7, 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 to keep him from getting sick.
Yesterday he and I did go out to run a couple errands. He was in such a good mood and we had a really fun time.
One of the many things they check in his weekly blood work up, is his platelet count. His is up above average, but that is due to the Neuprogen shots which stimulate his cell production. They say that will level off.
So now I will take on what I hope is the last battle, SSDI. Please pray that our attorney is able to get a Judge to sign off on it. They have denied him twice and are now looking at a hearing date of Summer 2017. He applied 2013.
I think so many believe Luke received the Stem Cell Transplant, walked out of the hospital and is now cured. This was never about undoing the permanent damage done to him by this disease, but stopping the MS from killing him.
If he gets the added bonus of the feeling returning to his legs/feet/hands, his bladder issues to go away, his eyesight returns to 20/20 and his cognitive ability improves then God really did smiled down on our son.
I feel like all Luke has done is wait. His life has been on hold for 3 years as he dealt with his body attacking itself and he will wait another 1-5 years to see the full extent of what he gets back after HSCT.
Remember all he wants is to ride a bike again. Praying that happens! Luke has been amazing through all of this. Andrew and I are very proud of him, and for the smile he continues to show everyone.
October 3, 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.
September 22, 2016
FYI…TO ALL THOSE WHO DONATED TO LUKE’S PAGE, IT IS TAX DEDUCTIBLE!!
September 21, 2016
At first we thought these were funny, but soon they became very painful.
September 20, 2016
September 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.
It was also bittersweet as we left yesterday. We have developed some awesome friendships during this journey in Chicago. From other HSCT patients, now forever family. Thanks Tiff & Andy for coming to visit us and always being there, love you both! My dear friend Melissa who I cannot thank enough for all she did for Luke and I during our many stays in Chicago. The amazing nurses, PCT & staff at the hospital. It would take me forever to list them all.
A special thanks to Dr. Burt and his “Posse” (PA’s) for hopefully stopping Luke’s MS. Luke still has lots of work ahead of him to maybe regain some of what was taken from him by MS. Only time will tell. Weekly blood test, PT, gym and medicines for a year. In six months we go back to Chicago, so Luke can have another MRI and other tests. I hope to then be able to officially post that he has no new lesions.
I ended up having to page Dr Burt as we were driving home. Luke got nauseated, then puked out the window (we could not find a place to pull over). It went all over the side of the SUV (and even hit the car driving too close behind us…oopps). So Dr. Burt called in some anti-nausea meds for him. We stopped for gas and Andrew had to wash off the truck, we all laughed because Andrew had washed and vacuumed the truck before coming to get us. Anyway I got Luke a 7up to help settle his stomach. He drank part of it, then forgot he sat it on the floorboard and kicked it over. Sticky mess! As we were leaving the hospital I grabbed one of the urinals, at the last minute and boy was I thankful. Luke had to use it several times on the way home. We got home a little after 10:00 and Luke dropped the urinal as he was getting out, it went all over the garage….By this time we were all laughing so hard and Andrew said “I’m taking you back”. LOL.
I hope to finish getting all the photos uploaded and a couple videos as well. But before I get to that I need to catch up on so many things around here.
Thanks to all of you that have helped us through this incredible, yet stressful time in our lives, to basically save Luke’s life. So many have prayed, donated, given of themselves and been there for Andrew, Luke and I.
One last thanks to the NYPD brotherhood, who without them we would have been a lot more stressed. Mere words escape me when I want to tell you all what it meant to us for you to help our son, who most of you have never met. Just know someday your act of kindness will come back ten fold!
September 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, but 0.1, he needs to be 1.0. Those are the good things.
He failed his ortho static test again, so another bag of fluids and his hemoglobin has become low so he is getting a blood transfusion.
They plan on rechecking all his numbers again this afternoon. So if there is a change I will give a second update.
Luke has been such a trooper, but he is starting to become grouchy, just with me. Totally understand, but I’m going to leave in a few and take a walk.
Please pray, this is so hard on us all.
September 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. That was our day. Thanks Melissa!!
September 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 more, so that is the goal for today!
Sadly his heart rate when he stood up during his test this morning was over 150. So now he is hooked up to another bag of saline for 4 hours and peeing every 5-10 minutes. It totally exhausts him.
We did have our first visitors yesterday. Really cheered Luke up to see Andy and Tiffani (she transplanted weeks ago when Luke was here for mobilization).
Also Andrew fixed the photos on here and everyone can now see them. There should be a link on the right side of the page, just scroll down. Maybe today he can upload the video after he repairs the lawnmower,,ugh!
September 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 Orthostatic Test and his heart rate is up to 135-140, also a concern.
His platelet level was 17 (under 20 is bad) yesterday and after his 2nd bag, it dropped to 9 today. So after throwing up again this morning, he has already had another bag of platelets and another bag of fluids.
Dr. Burt just stopped in and he said he expects Luke start feeling better soon. I’m not sure what soon is.
I am adding several more photos (a couple new ones on the Mobilization and then a lot in the September folder) and going to get Andrew to upload the video of his transplant.
We are both tired, Luke is gaunt and has lost even more weight.
So prayers and more prayers please. Thank you!
September 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 points away from a blood transfusion and could possibly get another platelet. I will update again if that is the case.
He has just been too week to get out of bed, so has not gone for a walk. His appetite is all over the place. Has a sweet tooth and then needs fried chicken. We are so sick of the hospital food. Breakfast is OK then it is downhill for the rest of the day. So I try and find him what he wants. Easier said than done.
We have not seen Dr. Burt since the 6th and that was, supposedly he is back tomorrow. His Posse is very hush hush as to why he is not here. I will try and add more photos as soon as my phone cooperates.
We are both getting homesick, but I still believe this was the only answer for Luke. To have a Dr tell you that time is not on your side and you will be paralyzed and blind within months is scarier than doing something that gives you a glimmer of hope!
September 8, 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 sitting or lying down. Orthostatic hypotension can make you feel dizzy or lightheaded, and maybe even faint.
His dropped 25 points. So now he is getting a saline drip, has to stay in bed. Of course he has to pee every 15 minutes, so out came the urinal bottle. They will recheck in a couple hours and reassess then on what to do if this does not work.
September 8, 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 problem. Even got the nurse to fix Luke’s times for his antibiotic IV (only about an hour) to 8:00, 2:00 and 10:00 (instead of the last one being at midnight). We were golden!
So we went to sleep and at 3:00 a.m. I woke up drenched in sweat,,again. Got up and it was almost 80 in here. They never came yesterday to fix it. Luke heard me trying to fiddle with the thermostat, and said “oh mom I am so hot and feel sick”. Well we rang for the nurse, he no more walked in and Luke puked again.
So he immediately shot anti-nausea meds in his PICC line. We went back to sleep at about 4:00 and at 5:30 Ramon shows up to switch out the thermostat. LOL
So Luke is what they call Neutropenic, which means his count is almost zero. He now cannot leave his room without a mask, though that is not going to be an issue, as it also came with a fever and he is in bed, not feeling well at all.
And we wait and use lots of germ killer. One step closer to going home!
September 7, 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 page and had grand plans to post it here, but I brought the old laptop and I can’t post it. So it will have to wait until we get released.
So today is day +1. His white cell count is down to .07, so by tomorrow it should be 0, then we wait. He needs to hit 1.0 to be able to go home.
We have been here a week and he has anywhere from 1 – 2 more weeks. to go. They say it happens fast. Like if he goes to zero and then comes back up to say .02….he may stay at that number a long time, then wake up one morning and be at 1.6. They draw blood at 4:00 a.m. every morning. So we know at the changing of the nurses at 7:00 a.m.
We both said today we miss our beds.
Thank you to all who sent balloons, cards, cakes and remembered him in your prayers….so wonderful to brighten up his room and mood!!
Will try and add some photos…We are both so tired.
September 5, 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 busy morning. He had a good breakfast (he has not eaten much). Then a visit from Dr. Burt who said Luke’s labs all look perfect and that his cath could come out. So now he has one less tube to drag around.
But now he is feeling lousy, which seems to be his normal. As each day goes by I see him feeling worse, less energy, taste buds are off. Each day he wakes up feeling ok, but as the hours go by he gets tired, nauseated and the ever present hiccups. .
So tomorrow is the big day. It will be at about 10:00 a.m. central time and yes I am filming it to post later. Usually they do not give a time, but he is Dr. Burt’s only transplant scheduled. We are both excited and nervous. We both understand that Luke is not going to get these stem cells and jump out of bed healed. He still has a long road ahead of him. Most have said about 2 years give or take. Everyone is different!
I do know that Dr. Burt, genius that he is, will stop the MS. Though I am praying and believing in God, that Luke will be able to live alone, ride a bike, drive a car, walk and see normally again. Plus all the other little things taken from him by this horrendous disease.
I do not want him to have a life of just existing, but a life of living. Again thank you to all who have prayed and supported us in so many ways during these last 2 years.
September 4, 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 my coffee before we were off and running.
This was by far his worst day so far, regarding not feeling well. But he kept his sense of humor and his wonderful smile intact all day.
He did enjoy his long visit with Dr. Burt, the man, God gave the gift, to save so many people. We talked about so many things and even the bad rap Cops are getting in the news. Nice to see the less serious side of him. Tomorrow he will be back to business!
Then nausea came and they gave him Compazine and within minutes he was out. Praise God because he is sleeping and no hiccups.
Will upload some photos tomorrow. I need to get to bed too, because I have to get up when his bags empty and his pole starts to beep. Pole’s name was changed to Aria.
BTW he has changed his name on the board everyday. Yesterday he was Jon Snow and today Pony Boy playing a little trivia with the nurses. First day he was Duke for a special little girl he once met.
Last bag of Chemo is almost done, I will post more photos tomorrow!!!!
Thank you all!
September 3, 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.
Luke’s worse side effects has been the hiccups and yesterday when they started we were actually laughing (will share that video later), but then they got really bad. After almost 90 minutes the nurses came in to give him a second dose of a muscle relaxer, when he started sneezing so hard. That lasted a good 15 minutes and when he was done so were the hiccups. He has had them now about 6 times.
Luke has also had some nausea, they gave him a compazine last night about 6:00 and is still asleep.
Dr. Burt just came in and asked about him. Luke is going to be bummed he missed him. Dr. Burt is all business during the week. Comes in with his posse of nurses, but on weekends, he allows his staff to take off and he does rounds alone. What an amazing man, who is married to an even more amazing wife. Here is more about him.
I hope to upload a couple videos or have Andrew do it. One is of Luke with the hiccups and the other is him walking the halls. Chemo and steroids temporarily take away the MS symptoms, So I love seeing him walk and was happy that he allowed me to film it.
Well sleeping beauty just woke up, time to start the day.
Thanks again for all the support!!!
September 2, 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 drugs, several bags hanging from his IV pole. Tradition is you decorate it or at least name it….so his IV pole is Sasha.
We made it through the night. He had some nausea last night and a bad headache, but the nurses are pretty quick about getting the medicine in here to take care of it.
The one side effect he had had now several times is hic-ups. But they even have a drug to get rid of that.
Thanks for the prayers and I’ll try and be better about updates, photos and videos!
August 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 has been there for him!!! We only have 4 days to get so many things together. We are both excited and nervous.
Gift Shop # 877-887-3200 (will add room # later, but it is not really needed).
His admission date is 9/1/2016. He will be there for at least through the 16th, maybe longer. I will post updates often.
Here is the address for the hospital:
Northwestern Memorial Hospital
250 E. Superior St
Chicago, IL 60611
C/O Lucas Allen
August 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 thrilled to be called “thin” by the Doctor. To me he looks like skin and bones, he just has no appetite. But all in all he is still happy and ready to get this all started.
Looks like September 6th will be his big day or “Stemmy Birthday”. So mark your calendars as I will do a live feed on FB and then later post on here. We have watched a couple and it is awesome. They bring in the stem cells on dry ice, then a Pastor blesses the cells and Luke, as he gets a second chance at life. Only takes about 30 minutes, but it will last a lifetime. I cried watching our friends do theirs so I can imagine how I will be seeing Luke get his and he can say good-bye to MS.
I will say that every patient is so different that has MS and so are all that have HSCT. Some over the next 1-2 years regain most of what they lost, others only regain a few things. BUT what is certain this stops the lesions in his brain and spine from developing and shrinks the ones he has.
We still have a long road ahead of us, months of PT and Luke regaining his strength and independence.
I want to again thank all of you for the prayers, donations and positive thoughts. We could not have gone through this without all the support of our friends.
August 12, 2016
Article done back on August 3rd.
August 7, 2016
8/1/16 and getting close to the end of the Harvest part of his quest for an MS free life. Luke ended up with 5.6 million Stem cells that will be given back to him on Transplant Day.
August 7, 2016
This is another video from 8/1/16. After line was inserted we went over to the Galter building to start Stem Cell Harvest.
August 7, 2016
This is from 8/1/2016 when Luke started an early morning of having a central line inserted into his neck. He said after it was horrible and very painful!
August 5, 2016
We have been home a couple days. Luke and I both were drained. I have photos and videos to post.
Luke’s neck is healing. His eyes are back to the way they were, but his walking is ever so slightly better.
We saw his Nurologist yesterday and he said that he thinks with Luke’s age and the aggressive form of MS he has we are making the correct choice.
So I hope to get a free day, soon to update the site.
July 30, 2016
July 30, 2016 – Saturday
Luke needs to stay out of crowds or wear a mask, so another day of hanging out in the hotel room; watching The Arrow, coloring in a cool coloring book loaned to us by Luke’s friend Karisa, playing cards, kindle, laptops….the usual entertainment. The also have a gym, which we have both made use of.
It is overcast here, several nights we have had thunderstorms and because we are so close to the ER we are serenaded by sirens all night long. We are almost to the end of this part of his journey.
The hotel has a pretty good breakfast each morning and Monday through Thursday we also get dinner. So I had to cook last night (hot dogs). I know poor me. I think we are having them tonight too.
Thank God we were able to get a suite for the same price as a regular room. We can go to opposite sides and have some alone time or watch different TV shows. It’s been a.life or relationship saver!!
We have gotten a good sense of what our next trip will be like after visiting some of the other patients doing their transplants. That will be very hard on Luke as he cannot leave the floor he is on. Hopefully he will have others transplanting that he can talk to, because boredom and or loneliness is what all of them complain about.
So Monday morning we will get up and out of here by 6:30 a.m. and head over to get Luke’s PICC Line inserved into his neck and cath put in. Go get blood work drawn. Then go eat breakfast. As soon as we get an all clear on the blood work, we head over to start harvesting. It’s an all day affair. The magic number is 2 million stem cells. If he hits that we will go home Tuesday.
BTW I plan on doing a live feed on FB to show everyone what harvesting Stem Cells looks like and also another live feed on September 6th when he gets his Stem Cells put back in. So mark your calendars.
Please pray for another patient, young man, age 20, that Luke was going to go through all this with (shared dates). He found out yesterday that he has a serious heart condition that excludes him from continuing. My heart goes out to them as I can’t imagine getting this far and that glimmer of hope all the patient’s hold on to slip away.
July 27, 2016
Yesterday I finally got Luke out for a walk. Though I brought his wheel chair, he did not need it. Maybe walked 1-2 miles? This morning he woke up very sore.
7/27 Wednesday! This.morning Luke started his Neupogen Shots (3 in the belly-18 total over the next several days), Cipro and Difucan pills.
We hope to go for a small walk around noon, then hang out in the room and maybe watch The Arrow.
Tomorrow we need to go across the street and Luke has to get some blood drawn. Friday.his immune system will become dangerously low. So I think going to the Museum (only thing he asked to do) is not going to happen.
Again thanks for reading this and especially for all the prayers.
July 24, 2016
Luke woke up, finally, and his walking has improved greatly. I am sitting here crying because as an added bonus….HE CAN SEE…..not perfect but highly improved.
This is just after 1 dose of chemo. What will really make this permanent is the next trip where he gets 5 days of chemo and they kill the MS and then give him back his own clean stem cells.
As a mom seeing him feel and look normal is amazing.
July 24, 2016
Finally had some quiet time….seems as if it has been months….and read all the wonderful post people have written. Just made me cry. I love you all. Luke is sleeping and I am getting ready to go to bed too. Luke mage it through the Mobilization and next is the harvesting of his Stem Cells! I will keep you posted!
July 22, 2016
Well after a very interesting night (Luke got the king size bed) & Andrew and I shared the pullout, he is now admitted and ready to start. Noon he gets IV fluids and 2:00 starts Chemo.
July 20, 2016
Countdown begins. We have 24 hours to get Luke and I packed up to stay for about 10-14 days, depending. Food is so expensive in Chicago I am taking most from home. So it adds so much more to my already long list of things to take.
Yesterday we went to the greatest hair stylist around, Jana Chamness so she could undo all the hard work she did a few weeks ago, when she dyed Luke’s hair purple. Basically what she did was shave Luke’s hair in preparation for his 1st Chemo treatment Friday which will make him loose his hair. What made this different was that we had a cameraman from the Decatur Herald and Review newspaper taking photos of it all. Watch for that article, which I will share on here. Photos I took are in the photo album. Again thank you Jana, we love you so much! BTW Jana was the only friend who actually put out a jar to collect for Luke, she is so special!
So of course our schedule with Northwestern ALWAYS gets changed. This time is no different. We were going to leave at noon tomorrow and now Luke has an added appointment at 11:45 to see an Endocrinologist, due to his high T3 levels. Dr. Burt leaves nothing, no matter how small, to chance.
I will try and get on as much as possible to update, add photos and keep everyone in the loop. Just like MS is different in each victim it attacks, so is the Stem Cell Transplant. We have made some very close friends who are one step ahead of Luke in this process, so we see how they react and get a sense of what will happen. But you just never know.
I have to say thank you to all that have donated, I can never ever express the gratitude we all feel. A special thank you to our NYPD family who have gone above and beyond to show how they take care of their own.
Please keep those prayers coming!
July 7, 2016
We are on our way home from another world wind trip to Chicago. They seriously fit so much into each day, its crazy..We finished up his pretesting, Met with Dr. Burt, who explained, once again to Luke, the risk involved and that he could die. Luke basically said he was willing to take the chance as he had no life now. At 25 years old sitting around your home unable to do anything is almost torture.
We were able to meet up with several other people going through HSCT and hear their stories. They all refer to Luke as their little brother. Adding a few photos in the album on here.
Next step is Mobilization and Harvesting of Luke’so Stem Cells.
June 20, 2016
We are still awaiting the dates for Luke’s Stem Cell Transplant. I have been checking prices on hotels close enough to the hospital, so that me pushing Luke through downtown Chicago will not be too hard on either of us. God forbid he has an allergic reaction or in case it is too hot/raining.
Also trying to come up with some clever ideas for meals. Luke and I will be up there for about 10-14 days and the hotel alone will run almost $5,000. There is a fridge in the room and we do get a free breakfast. I plan on taking stuff for PB&J sandwiches, soup, crackers, instant mac & cheese and other microwavable foods (microwave is on the 1st floor). So if you have any ideas please shoot me a text or email.
More than anything, please pray for us as we begin our journey, that we have safe travels, Luke goes through this with little or no pain and at the end he gets his wish “To ride his bike again”.
June 8, 2016
GREAT NEWS- PRAISE GOD
Luke was approved for the Stem Cell Transplant and now we await the dates to go to Chicago.
Please share this as we will have lots of expenses; co-pays, gasoline, hotel, food etc.
I will be also starting a blog to document every moment of his journey! Will post the link as soon as I get it set up!
Thank you all and God Bless.
April 26, 2016
It was a grueling day yesterday. Started at 7:00 a.m. in Chicago, Luke tried to eat breakfast, nothing tasted good but he got some apple juice down.
Then over to Northwestern University Hospital for his first app @ 8:15 for the 2D Echo, then 9:30 for the Pulmonary function test, then we ran up to the 18th floor for blood and urine. At this point Luke shares that he has not urinated all day and cannot give a sample. They give us a cup and we run to the 11:00 vein check and tour of how they will separate his stem cells out. I was getting ready to call the nurse about Luke, when he filled the cup. Yea!
I ran the cup back up to the 18th floor and Andrew and Luke ran to get his cane he left at the 8:15 appt. We met back up in the lobby.
After that we tried to have lunch but the 2 restaurants we went in made him sick, so we went to get his chest x-ray. They forgot about him (they had a tech leave in the middle of his shift). So I noticed people going in and coming out after he went back. It took forever, but we got that done.
So we left there and went to the neurosurgeon’s appt at 1:00 p.m. to see about the hydrocephalus. He believes that is being caused by the lesions and was calling Dr Burt on how to proceed. I got the feeling that he was very interested in Luke’s vision issues. Thank God for smart phones, I was able to pull up my e-mail and send them to the Doctors e-mail before he was done with Luke’s exam. Then it was back to get his EKG. By this time it was 3:00.
We decided to head for home and eat outside of Chicago. Luke got sick at the restaurant we stopped at, that was at 6:00. Then he slept all the way home (8:30) and is still asleep. Slept 15 hours. I hope he eats when he wakes up.
The insurance said it would take 30 days after all test where in. Today he sees his psychologist and she is filling out that Psych Evaluation. So we should know soon.
This is only part of the pretesting Luke needs to have done, but all that the insurance asked for. He will go back up after approval for another MRI, dexterity testing with a nurse (baseline?), see Dr. Burt and Dr. B (neurologist @ NW).
If all goes as planned he and I will go up for harvesting. I do not know the timeline yet. Last Thursday I had no idea that on Monday we would be in Chicago doing pretesting. I think because we live so close and are flexible they can fit us in sooner than those needing to arrange a flight.
April 21, 2016
Well we are headed north again. The insurance wants Luke to get most of the pretesting done before they approve him for the transplant. He will get his dental and psych evaluation done here, then all his pulmonary function test, x-rays, EKG, vein check, blood work (18 vials…UGH) and seeing the neurosurgeon in Chicago.
This is only about half of the pretesting. If the insurance approves him we will head back up for him to have anther MRI, see both doctors again and have some testing done by a nurse (dexterity/math). Not sure if that will be an extra trip or combined with the trip in which he and I will be up there alone for 10 days, as he starts the stomach injections that makes his body produce millions of stem cells. From all I read this a painful and very exhausting time.
Will give an update as soon as I know the dates or when we get back. Please continue to keep us in your prayers, though Luke keeps his chin up I am sure it is getting to him.
April 18, 2016
We have not heard anything after getting a letter over a week ago from our insurance stating they had sent Northwestern a request for more information AND so we wait. Its like watching water boil.
Luke did have his eye test and I wish I could share it on here. looks like a weather map. His bad eye has more cloudy gray with these peach colored clouds over the top. The his good eye, which last year was clear, has the beginnings of the gray cloud coming in and just a tinge of peach.
Bottom line is without the Stem Cell Treatment he will loose his sight. This MS just wants to take everything from him.
Thanks go out to everyone who is praying for Luke and for us. Watching your child go through something like this is heartbreaking. I would take it all away from him, if I could.
Hoping we hear something soon and we are heading north to Chicago!
Photo Galleries (8)
September 5, 2016
Sending love and strength. Lean on your family and friends when you can. Praying for Luke.
September 5, 2016
Please know my thoughts are with you daily! Luke-your amazing! Knowing your mom the way I do-I see why you are. She's strength. She's love. Shes your rock. We would all take this for you if we could. Nancy- my dear friend since high school. Please look to God with every breath. May He wrap his armor around you all and carry you through this. I love you dear friend. Hugs, prayers & love to all!
August 1, 2016
Such great news Nancy. I have been following your story about Luke. I love seeing the updates about the positive signs your family is going through. I did the donation because you are an inspiration to me. Keep moving forward. I will be praying for Luke. Big Hugs to you. I love your strength.
Mary Deaner Brewer - Fresno, CA
July 30, 2016
Love you guys!!!! Looking forward to the videos....if it's not too crazy
July 25, 2016
Wow, I've been out of touch for awhile!! Glad this opportunity opened up for Luke. Will start praying and keep doing so. Love you guys and tell Luke I'll pray HARD! Remember how important faith is to prayer. Believe that God will answer the prayer and it will happen!
Leslie Jackson Hogge
July 25, 2016
I love the update on Luke. Your young son is showing signs that are positive. Bless his heart for keeping his strength in getting better. Nancy and Andrew keep your positive strength up.
Mary Deaner Brewer
July 24, 2016
Sending prayers and love, I know he will do well and be up and around soon....l love Aunt Diane
July 21, 2016
I've never met anyone in my life who has had such a burdensome problem, and still have the incredibly positive outlook on life and people that he does.
July 20, 2016
Luke has always been one of my most supporting friends. (: I hope everything works out with this procedure.
July 20, 2016
I remember you as such a cute little boy an here you are today a brilliant an bright handsome young man. Your truley blessed to have such a wonderful parents ! And a mother who would go to the ends of the world for you! You have so many people supporting you Luke! I'm proud to know you ! I pray everyday for everything to go well Luke. I'll continue to follow your updates ! Love from our family to yours ! fight! Fight! fight ! We are ALL praying for you !
July 20, 2016
Ahhhhh Nancy!!! You're gonna make my eyes leak more!!!! Good luck to you guys. Thinking about you both everyday!! $
June 30, 2016
God Bless you and keep fighting!
The members of the NYPD Challenge Coin Trading Post
June 27, 2016
best of luck to you.
Dave & Hilde Hendricks
June 26, 2016
Good Luck Luke
Robert & Laura Oyler
June 26, 2016
We will be praying for Luke. Almost 8 years ago my husband had this same stem cell transplant, actually it was a double, back to back, within a 4 month period. His was not for MS but for a rare bone marrow cancer. By the grace of God, he went into remission immediately and has been cancer free this whole time....I tell you this only to encourage you to the great possibilities of this treatment. And, although the chemo is not fun, he received it all as an outpatient and we walked a mile to and from the clinic almost everyday...(by choice). Again, I just want to encourage you and help ease your fears as you begin this journey. One of our favorite verses..."The Lord is good to all and His tender mercies are over all His works." Psalm 145:9
Don and Carla Readhead
June 21, 2016
I love y'all little brother and momma bear, and papa bear!! If I had it you'd have it!
June 13, 2016
Keep smiling, Luke. I will forever be impressed with your courage and your sense of humor in the face of such heavy difficulties.
June 12, 2016
Prayers your way Luke for the strength to fight the MS! Know that your mom is fighting for you too.
April 21, 2016
You got this!
April 5, 2016
We got your back Lucas!! Fight the good fight!
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