APPLYING FOR HSCT

DATE

Just another quick update asking for prayers.

Luke is still here with us, he seems to be getting worse by the day and no way could he stay alone at his house. I have a call into his Dr. to discuss this.


He had a horrible day at the gym, did one exercise and overheated so bad that his eyesight in both eyes went. I allow him to do his own pace, but I noticed him staring out the window at the snow. I asked him what was wrong and his answer ripped out my heart.

"I am getting worse Ma and I hate this". I tried to give him my pep talk and explained how some on my caretaker group call MS a monster, and though it attacked him as his mom, it has attacked me too, in a way.

He said he had read a post that MS can be harder on a loved one than the MS patient. I started to cry and said as a mom I have always been able to fix what was wrong and I can't on this one. He hugged me.

It just broke my heart.

I am calling tomorrow to try and get Luke into a stem cell trial. He is right, the new meds he is on seem to be making him worse or are not working,,,again. Which means he will have to try another one. These shots will eventually destroy his immune system.

More I read, more I understand, more I hate this horrendous disease that is doing this to my son.

Please pray for a miracle!

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Start of a new journey. We have prayed and decided to send (today, February 29th) in an application to Dr. Burt in Chicago for Luke to be accepted into his Stem Cell Trials. Luke is going to need all the prayers he can get. I took the following off a website as to what he will go through. """First, their immune systems were tamped down using low-dose chemotherapy. Then, doctors used HSCT therapy, involving an infusion of the patients’ own stem cells, previously harvested from their blood, to reboot their immune systems. """ Here is the website if anyone wants to read further: http://www.stemcellresearchfacts.org/dr-richard-burt/ .... We cannot just sit here and watch Luke get worse. I feel as if he has been abandoned by family and friends. The only way for him to have a life worth living is to fight the hard fight. These drugs he is injecting may slow the inevitable, but are they destroying other organs? Luke has been on board from the beginning, but as a mom this has been a bit harder for me to accept. I know he wants to go home to his house, have friends over, have a job....normal things for someone about to turn 25. I will update you, just know this is a long process. Please pray this is the correct road!

DATE

UPDATE ON STEM CELL TRIAL..........Prayers are really needed. We are scheduled to go up next week for Luke's evaluation. IF he is accepted into the program, they will start working with our insurance to get this paid for. It looks like Luke and I will be going up in May for his first hospital stay and then back again in June. I am praying really hard that because we live fairly close we will not have to spend the 3 months that the letter from the nurse said is the average time spent in Chicago. I did join a group of other people that have been through the trial and some like us that are starting and even more that are waiting to get in. One of the first pieces of advice I was given was to order cases of water sent to the hotel room prior to arrival because the water in Chicago is nasty. I think that is for most that fly in and have to stay. Thanks again and I will update after next week.



I hope to transfer all of Luke's story from his Go Fund Me account (September 2014 - May 2016) onto my blog that is entitled My Son's MS Story as soon as I can. Until then I will keep this blog going as we start Luke's Story as he goes through Stem Cell Transplant (HSCT) with Dr. Burt at Northwestern Hospital in Chicago Illinois.

This is a huge project I am trying to do so please be patient with me. Please read here to keep current on Luke's journey.

We do not have dates yet as to when we are going up, but I am starting my planning on backing and also getting some meals together for Andrew. This is going to be hard all the way around as we both can't go up. Someone has to stay here and take care of the garden, house and animals.

Luke got his hair dyed purple on the 9th and I got purple highlights, by our favorite hair stylist Jana!!!