DATE
Compassionate basis
DATE
MORE PRAYERS NEEDED----Luke had an appointment with his Ophthalmologist
today and it was not good new. Even poor Dr. Scott kept saying how sorry
he was. Luke started saying "Its ok, Dr. its not your fault".
But his left eye, the bad eye is worse and his good eye is showing signs of going bad. So not what we wanted to hear.
Also have heard nothing from the insurance about the Stem Cell Transfer, which is needed more than ever now.
So tomorrow I am going to make some calls and send these eye reports
up to Chicago. Maybe this bad news, will turn into good news and get
the insurance to approve what he needs.
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.
Sunday, June 12, 2016
A DAY IN THE LIFE OF LUKE
DATE
I started this Go Fund Me page for Luke 18 months ago to help him continue to stay in his own home. It helped so much. We kept him going for 15 months. It averaged out to be about $270+ a month that went toward utilities, things that made him more comfortable, etc. Not one penny was frivolously wasted. Giving on here ends today; this need is no longer a priority because things have changed. I will still use this as a way to get updates out, but that is it!
A few months ago Luke’s brother had moved out and he realized he could not live alone. So slowly he started staying here, BUT let me make it clear his dream is to go back home. This is temporary. It has made it easier on me, but we are trying to work on his home to make it easier for him to live in i.e. walk in tub! I realized just how bad he was getting when he started staying here more. So many of you know someone who has MS, those people go to work and live somewhat normal lives. That is so NOT the case with Luke. His life is anything but normal. So the following is the day in the life of Luke.
I give him his “wake up pills” about 9:00 a.m., he goes back to sleep until they kick in and he has no choice but to wake up. He stumbles to the bathroom, grabbing the furniture, walls or anything to get to where he needs to go. He has breakfast, and then he sits. Any other activity and he heats up and both eyes go blind. So he spends his days, reading, playing video games and hanging out with us (we try and watch a movie a day with him). His legs are so weak; he shakes and or has periods of clinching/stiffing of muscles. He is in extreme pain throughout his bones. He stays up later than we do; but I feel he needs some alone time. I get his meds sat out (with his injection). I will not go into all the appointments, calls that need to be made, because this is not about what I do. I also don’t want to embarrass him by telling everything, but he is deteriorating before my eyes. He has the most aggressive form of MS and has no future without this Stem Cell procedure. Now that has given him hope.
Family and friends have deserted him. His birthday was yesterday and I do not think his brothers, Grandma, Aunts, relatives, friends contacted him. Only his sister, who texted “Happy Birthday”, not, how are you or how you feeling. What happened to family, especially ours??? In fact sadly 99% who gave on this page were our friends, only one family member, my cousin gave. I honestly wish Luke’s family would just take the time to contact him. What a lonely existence for him.
So I want to thank all of you who gave, not just with money, but with your time, to pray for Luke and Andrew and I. No one knows the heartache of watching a child fight something this horrendous unless you have been through it.
God Bless you all and now we fight to get to Chicago! More on that later.
Saturday, June 11, 2016
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!
DATE
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!!!
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!
DATE
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!!!
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