It has been awhile since I have given an update on my wife.
Things have been stable with a the last MRI being a month ago. When the NO read the scan she did make a comment saying she was unsure if what she was seeing was scare tissue from the bleed or tumor. Being that they can't do surgery and another biopsy is very risky, we will just leave it be. Her only bad comment was that with GBMs it is going to come back at some point. Her good comment was that the average life span of someone with a GBM is 12-18 months and we are at 2 year. To us that is a big F U to cancer.
Through all of this it has really tried my patients. Her short term memory is terrible. She will ask me a question and then two minutes later ask the same question. A lot of the time I feel like I am stuck in Groundhog Day. Besides that and her constant fatigue, things are good. We made it to all but one of our daughters high school football games, she is a varsity cheerleader. We have gone to a few concerts and tried to live a normal life, but it is difficult. At times I feel like a single father with 3 teenagers, it has really tested me but I keep my head up and think of the alternative.
I have her now walking 3/4 mile in the morning, she stays at home by herself for a few hours every day, she helps or makes dinner a few times during the week as well. Her humor is through the roof, always cracking jokes a lot being inappropriate but always has a smile on her face. One of her favorite Christmas movies is A Christmas Story and she has asked for the Leg Lamp for Christmas, I gave her it the other day and she has not stopped talking about it.
We have come a long way from a doctor on the first day saying "If she makes it through this she will need constant care" and another telling me she had a few weeks to maybe a few months left. I thank you all for your thoughts and prayers they have worked to help us be where we are today. It is very touching when I get an email, a message, or someone comes into the store and asks about how Julee is doing.
I have a hard time celebrating Thanksgiving as that is the day it turned my world upside down, but I am very thankful to have my beautiful wife still by my side. Thank you OrangeBloods for always being there for me.
Here is an early Happy Thanksgiving wish to everyone on OrangeBloods.
Harlan, Julee and the Lawson Family
Wanted to give you all and update.
I have had lot of you reach out and ask about how things have been going for my wife Julee.
Things are going well, or at least stable.
Since May we have been on Avastin infusions every two weeks.
The end of July she had an MRI and the radiologist saw a nice amount of shrinkage. Our NO said that is typical from the Avastin but that would probably be the best we see. After that my wife told her "We will see about that."
We had another MRI this past Monday and got the results just a little while ago.
No change at all, so I am extremely happy with being stable and no new growth at all.
Julee continues to kick butt. She makes all of our daughters football games to watch her cheer, tries to stay awake for all the Texas games and just live life. We walk about half a mile twice a day and try to get out and run errands and just do normal things. Our older daughter has been such a life save in helping out to take care of her while I am at work, she is currently doing virtual school at Tech and doing very well, hoping to have her transfer to Texas in the Spring or next fall.
Only real issue at the current time is with her being fatigued, if we could get past that we would be doing much better.
Thank you all for reaching out to me and asking about her.
Again thank you for all the thoughts and prayers, these go a long long way.
Thank you all OB family we greatly appreciate you.
Harlan and Julee
Well today is the start of some big days for us. Today we go into get her MRI done, I don't think they will read it right then but still it is a big event. Monday we will take the MRI and head to MD Anderson for our appointment, to get second opinion and hopefully open some doors to take care of this thing. I am excited and scared as hell about this.
M daughter did a shirt fund raiser so we will all be wearing our Team Jules shirts today. If I can figure out how to post a picture again will do so.
Thank you all for continuing to reach out to me and ask for updates and keeping us in your thoughts and prayers, it means a lot to us.
Will give an update next week when we know more.
Haven't updated in awhile but have had a few people reach out asking about my wife Julee.
Things have been going well other than a two weeks ago.
As we entered the 5th week of chemo she basically hit the wall. She got very fatigued and unwilling to do anything. I basically had to push her out the door to get in the car and lift her into the car to get to radiation or for any other appointments. She also became very non verbal. The doctors got worried that it might be some fluid build up on her brain and the shunt wasn't working so they ordered a cat scan. When I finally got her to the doctors office, she would not cooperate at all. Ever time we would get her strapped down she would try to sit up and pull the straps off. They recommended we go tot he emergency room and get her medicated so she would cooperate. The emergency room was disaster, lots of coughing and sick people and I didn't want her to be in this environment at all with a weak immune system. I called the doctor and they were able to get us a room to get things started, that was after an hour sitting in the waiting room. Once there they started an IV and gave her Ativan. This was a miracle worker. With in minutes she sat up and said I am ready to go home. A completely different person. Since that Thursday she has been doing extremely well, seem that even a .5mg of Ativan has been helping big time.
I have started her on some pro biotics and other supplements as well as they increased her Dex, which we are starting to tapper off.
We had an eye appointment with Austin Retina to check on her poor vision. This was good but bad, seems her eyes are in great shape just seems it is something from the stoke or tumor are effecting her vision. We now have an appt with a neuro opthalmologist.
We have 3 days left of chemo and radiation this week and then off for awhile I believe.
Next up is an appt that I am trying to do second week of March with MD Anderson. Have been discussing with them on best way to get her in for an appt.
I have been doing well but now have the task of rushing through to try and get her disability paper work done with TRS by the 27th of this month so she can collect on some of her remaining person/sick days she had saved up. So if anyone has a good contact at TRS please let me know.
I am hanging in there and have my moments. I have so thankful for our oldest daughter, I don't know where I would be with out her help. She has been doing virtual school and given up time with her friends to help out with taking care of Julee.
Hoping for something positive out of the MRI on March 10 and will let you all know how that goes.
Sorry to ramble but it does help me out sometimes.
Keep the prayers coming.
Harlan and Julee
Good Afternoon
Another update for you all.
I brought my wife Julee home from rehab on Wednesday, the joy to be back home was incredible. She has gotten so much stronger. When admitted to rehab she could barely stand, now she is able to walk on her own but have to be by her side as her balance and sight are still off. Her short term memory is improving but still a big work in progress.
We started chemo that night and have done her first two days of radiation. She is doing well with it all, just tires very easily. We try and get out every day and do a short walk to the neighbors and back and swing on our patio. Have been pushing her to do word searches and other memory games. Last night made me so happy to have dinner at home with our two daughters, then get some frozen custard from Andy's. She woke up from her nap and told my daughter that was going to be our dessert. After that we played a few hands of Uno and then watched a bunch for funny SNL skits. To see her laugh and smile and to have fun little conversation with our daughters just made me so happy.
I made a call to MD Anderson to try and get a 2nd opinion but they wanted to meet her in person and can't do that with chemo and radiation going on. Still no feedback from the Mayo clinic for with the genetics of the tumor are, still hoping for some positive results here. Right now just making the best of everyday.
Dealing with insurance sucks, trying to line up home pt, ot and an aide is so difficult. Wish there was better communication but from everyone I talk to it is just the way of a terrible system.
Thank you as always for the many of you that have texted, emailed, called, made a donation, come by and done business and most of all prayed for her and my family. It is all going a long way.
We have a long road ahead but she is a fighter.
Thanks for all the thoughts an prayers.
Rehab is going very well. Have had her up and walking with either holding my hand or a rail, don't like using a walker as she has to lean over and slows her down. When she is walking she has a decent pace as it helps to keep her balance. Still working on her left hand, left leg is pretty strong. Her short term memory is still struggling, but just a work in progress.
Going to take her out tonight for dinner and to look at some lights, as long as she doesn't get to tired, then tomorrow I get to take her home to have Christmas with the family.
Still waiting on paths from Mayo, and the mapping to be complete for radiation to start ASAP.
Praying that this is not what the doctors are thinking it is.
Thank you again for every thing you guys have done.
The texts and emails I have received from friends and customer have gonna a long way to help me keep going when I am feeling down.
Merry Christmas to all you.
HOOK'EM
Wanted to give you guys a little update.
Thanks first off to those who have done business with me and sent me encouraging texts and emails. Your thoughts and prayers have gone a long way in helping us through this rough time.
I forget the day but I think it was last week they took her off the tubes in her throat and the feeding tube. She has progressed really quick and is now able to eat what ever she wants.
Yesterday they took out the drains from her head which in the words of the Nuero Surgeon "A minor miracle." They did a CatScan this morning and all was looking good with the fluids in her head.
We have finally gotten some rest the past two nights, its been really difficult for her to slow her head down and relax but I think she is there.
She is getting small rehab right now, right side is very strong as well as left leg getting there. Her left arm is a work in progress.
We maybe down graded out of ICU today, which is un real to progress this far.
Only major hurdle we are looking at is getting the biopsy back. They could not identify what it was here so it has been sent to the Mayo clinic and hope to hear something today.
Once again thank you to all for your thoughts and prayers. I have read these to hear and has brought tears to both of us to have so much caring.
Still a long road ahead but she is a Strong Woman.
Thank you
Harlan and Julee Lawson
Friday afternoon update.
First off thanks for all the prayers. They are helping.
Breathing tube came out Wednesday.
She has started working with the slp, which she is herself and occupational therapy.
No results on biopsy yet.
Did get to get a hug from her today when she was sitting on side of the bed.
I need to ask another favor. We are now looking for a good rehab center here in the Austin area.
Going to tour a few on Monday and Tuesday but would really like to know if you guys have any experience with any.
Tuesday morning
Thought I would throw and update since I have had some texts and emails.
Has been a stressful but restful few days. Julee has had a cat scan of her body and no tumors or other issues were seen.
She also has had an angiogram that that showed no brain bleeds or other vessel damage.
Today we have her biopsy at 10 praying that this is a great outcome.
Will keep everyone posted.
I have had a few people about other ways to help so thought I would share this link that a friend set up.
Thank you all again for your thoughts and prayers. I have read most of these messages to her and has brought a tear to her eye.
www.gofundme.com
Tuesday afternoon update
Biopsy went well.
Believes he got 4 good samples. Said there was still a lot of blood that has to drain.
Had a cat scan as well and all looked stable as well
Now it is just a waiting game.
Hope 3-5 days for results on the biopsy.
Hope to have breathing tube out tomorrow
Then waiting for blood to drain to lake the pieces out of her head to move out of icu.
She has had two very long days but is such a strong woman.
Thank you all.
Sunday update:
Wanted to throw one more update out here. Then I will see if I can link the site that my girls and friends have asked me to use.
Yesterday was just a rest day for her but still seeing progress. At one point she woke up and I told her to look out the window at the beautiful day and with both eyes wide open turned her head and looked out. Next told her to look to her left and see that my dad was there and she did so.
The most amazing thing was as we sat there she began again to want to tell me something and tried to use sign language to tell me but didn’t understand sign. I held up my phone to see if she could use the letters for texting but just to small and the coordination was not there.
Today will be an interesting day. The plan is to try and move her off the meds or reduce and then see if we can get the breathing tube out.
Lots of positive but still a long way to go.
The site I will be doing updates on is called Caring Bridge.
A CaringBridge Site was created for Julee. It‘s a caring social network to help people stay connected with family and friends during a health event.
Visit Julee's Site: https://www.caringbridge.org/visit/juleelawson
Site Name: juleelawson
I appreciate all the prayers and the many of you that have emailed or texted your support for us.
I would ask one last thing of you all. We have one other OB brother that is going to have a very difficult day today. Please say a huge prayer for @ScoutMLM
I have met his family and they aren’t just good people they are great people and are going to need our support today.
Thank you all again
Much Love to all of you.
@Ketchum please update this to my first page
Thank you sir
******
Saturday update #2 : "Ok
Cat scan just came back clean for tumors or cancer in her body.
Still have to wait to get blood off the brain to see what is causing this. Hope that it is this coming week.
On her last assessment they have been asking her to do thumbs up. I stopped them and asked her to do HOOK’EM
And sure enough she threw up the Horns."
Saturday Update #1:
Just woke up from a Power Nap
She woke up and was very responsive. Crossing her legs nodding to answer questions.
She got very frustrated because she was trying to tell me something and I could not understand. They had to sedate her because her blood pressure jumped during this.
Still don’t know what cause the stroke. Mri had to much blood to read. We are about to head down for a cat scan.
Will update later
Thank you everyone
Last night my wife had a bad stroke. Was standing in the kitchen cleaning up and she complained of a bad headache thought it was a migraine. She went into bathroom and became very disoriented and throwing up.
Called ems. Had surgery last night. Now just waiting on an mri
Please please please say a prayer for us. I can’t make it with out her.
Things have been stable with a the last MRI being a month ago. When the NO read the scan she did make a comment saying she was unsure if what she was seeing was scare tissue from the bleed or tumor. Being that they can't do surgery and another biopsy is very risky, we will just leave it be. Her only bad comment was that with GBMs it is going to come back at some point. Her good comment was that the average life span of someone with a GBM is 12-18 months and we are at 2 year. To us that is a big F U to cancer.
Through all of this it has really tried my patients. Her short term memory is terrible. She will ask me a question and then two minutes later ask the same question. A lot of the time I feel like I am stuck in Groundhog Day. Besides that and her constant fatigue, things are good. We made it to all but one of our daughters high school football games, she is a varsity cheerleader. We have gone to a few concerts and tried to live a normal life, but it is difficult. At times I feel like a single father with 3 teenagers, it has really tested me but I keep my head up and think of the alternative.
I have her now walking 3/4 mile in the morning, she stays at home by herself for a few hours every day, she helps or makes dinner a few times during the week as well. Her humor is through the roof, always cracking jokes a lot being inappropriate but always has a smile on her face. One of her favorite Christmas movies is A Christmas Story and she has asked for the Leg Lamp for Christmas, I gave her it the other day and she has not stopped talking about it.
We have come a long way from a doctor on the first day saying "If she makes it through this she will need constant care" and another telling me she had a few weeks to maybe a few months left. I thank you all for your thoughts and prayers they have worked to help us be where we are today. It is very touching when I get an email, a message, or someone comes into the store and asks about how Julee is doing.
I have a hard time celebrating Thanksgiving as that is the day it turned my world upside down, but I am very thankful to have my beautiful wife still by my side. Thank you OrangeBloods for always being there for me.
Here is an early Happy Thanksgiving wish to everyone on OrangeBloods.
Harlan, Julee and the Lawson Family
Wanted to give you all and update.
I have had lot of you reach out and ask about how things have been going for my wife Julee.
Things are going well, or at least stable.
Since May we have been on Avastin infusions every two weeks.
The end of July she had an MRI and the radiologist saw a nice amount of shrinkage. Our NO said that is typical from the Avastin but that would probably be the best we see. After that my wife told her "We will see about that."
We had another MRI this past Monday and got the results just a little while ago.
No change at all, so I am extremely happy with being stable and no new growth at all.
Julee continues to kick butt. She makes all of our daughters football games to watch her cheer, tries to stay awake for all the Texas games and just live life. We walk about half a mile twice a day and try to get out and run errands and just do normal things. Our older daughter has been such a life save in helping out to take care of her while I am at work, she is currently doing virtual school at Tech and doing very well, hoping to have her transfer to Texas in the Spring or next fall.
Only real issue at the current time is with her being fatigued, if we could get past that we would be doing much better.
Thank you all for reaching out to me and asking about her.
Again thank you for all the thoughts and prayers, these go a long long way.
Thank you all OB family we greatly appreciate you.
Harlan and Julee
Well today is the start of some big days for us. Today we go into get her MRI done, I don't think they will read it right then but still it is a big event. Monday we will take the MRI and head to MD Anderson for our appointment, to get second opinion and hopefully open some doors to take care of this thing. I am excited and scared as hell about this.
M daughter did a shirt fund raiser so we will all be wearing our Team Jules shirts today. If I can figure out how to post a picture again will do so.
Thank you all for continuing to reach out to me and ask for updates and keeping us in your thoughts and prayers, it means a lot to us.
Will give an update next week when we know more.
Haven't updated in awhile but have had a few people reach out asking about my wife Julee.
Things have been going well other than a two weeks ago.
As we entered the 5th week of chemo she basically hit the wall. She got very fatigued and unwilling to do anything. I basically had to push her out the door to get in the car and lift her into the car to get to radiation or for any other appointments. She also became very non verbal. The doctors got worried that it might be some fluid build up on her brain and the shunt wasn't working so they ordered a cat scan. When I finally got her to the doctors office, she would not cooperate at all. Ever time we would get her strapped down she would try to sit up and pull the straps off. They recommended we go tot he emergency room and get her medicated so she would cooperate. The emergency room was disaster, lots of coughing and sick people and I didn't want her to be in this environment at all with a weak immune system. I called the doctor and they were able to get us a room to get things started, that was after an hour sitting in the waiting room. Once there they started an IV and gave her Ativan. This was a miracle worker. With in minutes she sat up and said I am ready to go home. A completely different person. Since that Thursday she has been doing extremely well, seem that even a .5mg of Ativan has been helping big time.
I have started her on some pro biotics and other supplements as well as they increased her Dex, which we are starting to tapper off.
We had an eye appointment with Austin Retina to check on her poor vision. This was good but bad, seems her eyes are in great shape just seems it is something from the stoke or tumor are effecting her vision. We now have an appt with a neuro opthalmologist.
We have 3 days left of chemo and radiation this week and then off for awhile I believe.
Next up is an appt that I am trying to do second week of March with MD Anderson. Have been discussing with them on best way to get her in for an appt.
I have been doing well but now have the task of rushing through to try and get her disability paper work done with TRS by the 27th of this month so she can collect on some of her remaining person/sick days she had saved up. So if anyone has a good contact at TRS please let me know.
I am hanging in there and have my moments. I have so thankful for our oldest daughter, I don't know where I would be with out her help. She has been doing virtual school and given up time with her friends to help out with taking care of Julee.
Hoping for something positive out of the MRI on March 10 and will let you all know how that goes.
Sorry to ramble but it does help me out sometimes.
Keep the prayers coming.
Harlan and Julee
Good Afternoon
Another update for you all.
I brought my wife Julee home from rehab on Wednesday, the joy to be back home was incredible. She has gotten so much stronger. When admitted to rehab she could barely stand, now she is able to walk on her own but have to be by her side as her balance and sight are still off. Her short term memory is improving but still a big work in progress.
We started chemo that night and have done her first two days of radiation. She is doing well with it all, just tires very easily. We try and get out every day and do a short walk to the neighbors and back and swing on our patio. Have been pushing her to do word searches and other memory games. Last night made me so happy to have dinner at home with our two daughters, then get some frozen custard from Andy's. She woke up from her nap and told my daughter that was going to be our dessert. After that we played a few hands of Uno and then watched a bunch for funny SNL skits. To see her laugh and smile and to have fun little conversation with our daughters just made me so happy.
I made a call to MD Anderson to try and get a 2nd opinion but they wanted to meet her in person and can't do that with chemo and radiation going on. Still no feedback from the Mayo clinic for with the genetics of the tumor are, still hoping for some positive results here. Right now just making the best of everyday.
Dealing with insurance sucks, trying to line up home pt, ot and an aide is so difficult. Wish there was better communication but from everyone I talk to it is just the way of a terrible system.
Thank you as always for the many of you that have texted, emailed, called, made a donation, come by and done business and most of all prayed for her and my family. It is all going a long way.
We have a long road ahead but she is a fighter.
Thanks for all the thoughts an prayers.
Rehab is going very well. Have had her up and walking with either holding my hand or a rail, don't like using a walker as she has to lean over and slows her down. When she is walking she has a decent pace as it helps to keep her balance. Still working on her left hand, left leg is pretty strong. Her short term memory is still struggling, but just a work in progress.
Going to take her out tonight for dinner and to look at some lights, as long as she doesn't get to tired, then tomorrow I get to take her home to have Christmas with the family.
Still waiting on paths from Mayo, and the mapping to be complete for radiation to start ASAP.
Praying that this is not what the doctors are thinking it is.
Thank you again for every thing you guys have done.
The texts and emails I have received from friends and customer have gonna a long way to help me keep going when I am feeling down.
Merry Christmas to all you.
HOOK'EM
Wanted to give you guys a little update.
Thanks first off to those who have done business with me and sent me encouraging texts and emails. Your thoughts and prayers have gone a long way in helping us through this rough time.
I forget the day but I think it was last week they took her off the tubes in her throat and the feeding tube. She has progressed really quick and is now able to eat what ever she wants.
Yesterday they took out the drains from her head which in the words of the Nuero Surgeon "A minor miracle." They did a CatScan this morning and all was looking good with the fluids in her head.
We have finally gotten some rest the past two nights, its been really difficult for her to slow her head down and relax but I think she is there.
She is getting small rehab right now, right side is very strong as well as left leg getting there. Her left arm is a work in progress.
We maybe down graded out of ICU today, which is un real to progress this far.
Only major hurdle we are looking at is getting the biopsy back. They could not identify what it was here so it has been sent to the Mayo clinic and hope to hear something today.
Once again thank you to all for your thoughts and prayers. I have read these to hear and has brought tears to both of us to have so much caring.
Still a long road ahead but she is a Strong Woman.
Thank you
Harlan and Julee Lawson
Friday afternoon update.
First off thanks for all the prayers. They are helping.
Breathing tube came out Wednesday.
She has started working with the slp, which she is herself and occupational therapy.
No results on biopsy yet.
Did get to get a hug from her today when she was sitting on side of the bed.
I need to ask another favor. We are now looking for a good rehab center here in the Austin area.
Going to tour a few on Monday and Tuesday but would really like to know if you guys have any experience with any.
Tuesday morning
Thought I would throw and update since I have had some texts and emails.
Has been a stressful but restful few days. Julee has had a cat scan of her body and no tumors or other issues were seen.
She also has had an angiogram that that showed no brain bleeds or other vessel damage.
Today we have her biopsy at 10 praying that this is a great outcome.
Will keep everyone posted.
I have had a few people about other ways to help so thought I would share this link that a friend set up.
Thank you all again for your thoughts and prayers. I have read most of these messages to her and has brought a tear to her eye.
Donate to Lawson family, organized by Nicole Palacios
Dear friends and family of the Lawsons, We know how much you love and support this wonderful family. M… Nicole Palacios needs your support for Lawson family
Tuesday afternoon update
Biopsy went well.
Believes he got 4 good samples. Said there was still a lot of blood that has to drain.
Had a cat scan as well and all looked stable as well
Now it is just a waiting game.
Hope 3-5 days for results on the biopsy.
Hope to have breathing tube out tomorrow
Then waiting for blood to drain to lake the pieces out of her head to move out of icu.
She has had two very long days but is such a strong woman.
Thank you all.
Sunday update:
Wanted to throw one more update out here. Then I will see if I can link the site that my girls and friends have asked me to use.
Yesterday was just a rest day for her but still seeing progress. At one point she woke up and I told her to look out the window at the beautiful day and with both eyes wide open turned her head and looked out. Next told her to look to her left and see that my dad was there and she did so.
The most amazing thing was as we sat there she began again to want to tell me something and tried to use sign language to tell me but didn’t understand sign. I held up my phone to see if she could use the letters for texting but just to small and the coordination was not there.
Today will be an interesting day. The plan is to try and move her off the meds or reduce and then see if we can get the breathing tube out.
Lots of positive but still a long way to go.
The site I will be doing updates on is called Caring Bridge.
A CaringBridge Site was created for Julee. It‘s a caring social network to help people stay connected with family and friends during a health event.
Visit Julee's Site: https://www.caringbridge.org/visit/juleelawson
Site Name: juleelawson
I appreciate all the prayers and the many of you that have emailed or texted your support for us.
I would ask one last thing of you all. We have one other OB brother that is going to have a very difficult day today. Please say a huge prayer for @ScoutMLM
I have met his family and they aren’t just good people they are great people and are going to need our support today.
Thank you all again
Much Love to all of you.
@Ketchum please update this to my first page
Thank you sir
******
Saturday update #2 : "Ok
Cat scan just came back clean for tumors or cancer in her body.
Still have to wait to get blood off the brain to see what is causing this. Hope that it is this coming week.
On her last assessment they have been asking her to do thumbs up. I stopped them and asked her to do HOOK’EM
And sure enough she threw up the Horns."
Saturday Update #1:
Just woke up from a Power Nap
She woke up and was very responsive. Crossing her legs nodding to answer questions.
She got very frustrated because she was trying to tell me something and I could not understand. They had to sedate her because her blood pressure jumped during this.
Still don’t know what cause the stroke. Mri had to much blood to read. We are about to head down for a cat scan.
Will update later
Thank you everyone
Last night my wife had a bad stroke. Was standing in the kitchen cleaning up and she complained of a bad headache thought it was a migraine. She went into bathroom and became very disoriented and throwing up.
Called ems. Had surgery last night. Now just waiting on an mri
Please please please say a prayer for us. I can’t make it with out her.
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