I have sat and thought about how I would write this blog for some time now. As most of you know now Jodi ended her long battle with Melanoma on Sunday February 10th at 1:35 PM surrounded by her loving family and friends who have been honored to share this incredible journey with her.
We did make it to Las Vegas on Feb. 1st and got to see her favorite country artist George Strait in concert at the MGM Grand on Saturday Feb 2nd. The whole trip was not we anticipated due to Jodi not feeling the best and her taking a spill Friday night. She didn't remember the concert but she enjoyed herself. We spent most of the weekend in the hotel room and she was spoiled with numerous foot, leg, and head massages! We were blessed to meet so many generous people who greeted us with a smile, held the doors, gave Jodi words of encouragement, to people giving up their seats and taking care of her on the airplane. The world is a good place with so many wonderful people! we got to see this first hand.
We arrived in Appleton Monday February 4th and decided to drive straight home. Tuesday morning Jodi was having chest pains and the incision from her surgery in December was leaking so I called an ambulance to have her checked out. EKG was OK and a couple stitches were put into the incision to stop the leakage. she was released and we came home and she rested.
Tuesday night she was very restless and was not making a lot of sense. as soon as the kids left for school I once again called the ambulance and she was transported to MGH. She had a PET scan scheduled for that day so they gave her the meds for her anxiety she usually took for PET and MRI scans. she was very tired and that was the last time she spoke to us.
When the MRI and PET were over we met with the Neurologist and his team and found that the tumor growth in her brain had grown considerably. At that time we decided to cease all treatment and she was moved to a hospice suite.
The next four days were filled with tears and laughter as we were visited by so many friends, co-workers, family, and hospital employees who's lives have been touched by this amazing woman who I was honored and blessed to have called my Wife, best friend, and Mother of my two beautiful children.
She took her last breath so peacefully as I held her hand.
When this journey started in May of 2011 I remember thinking to myself, what am I going to do? The day she passed, I knew what to do. She has taught so many people through this that there are bigger things in life, not to worry what others think and live your life to the fullest. surround yourself with special people and to treat others as you would want to be treated. Help those in need, be polite, and always greet people with a smile on your face. Bruce and Delight should be very proud of themselves for raising an exceptional woman.
Jodi will never be forgotten, she has gotten the wheels in motion for a Non profit organization for awareness of Melanoma and to also help with people who are in need and to give to her favorite charities. We will be planning a walk in the beginning of May. We both felt that we need to "pay it forward" because we have been overwhelmed with the outpouring of kindness we experienced these past twenty months.
As I sit and type this I am happy because the house is once again filled with laughter. Ashley has a friend spending the night and they are having a blast as any 9 year old girls would! Nathan is spending the night with Grandma and Grandpa and he also has a friend staying with him. The kids are doing well, they have so many people to help them that they are continually busy. Nathan wanted to help with Moms last blog but I told him that there will never be a last blog but just a continuation of the lives that Jodi touched.
I would like to thank everyone again for all the support you have shown our family through this amazing journey.
Continue to Believe
Kurt
visitors to this page
Friday, February 15, 2013
Saturday, January 19, 2013
Home again!! 1/19/2012
It was a great day today as we welcomed Jodi back home. I arrived at the Hospital around 10:30 this morning and was told she could go home anytime. We knew that she was coming home so I have spent the last couple days getting the house ready for her. Got a rail put on the bed, bathroom accessories, Shower bench, Etc. Etc. We packed up her "apartment" at the hospital got her discharge instructions and we were on our way. Bruce and Delight stopped at Target for prescriptions and Me and Jodi came home. Arrived at the house, brought in her two walkers and wheelchair in to the house and the first big test was waiting for us, the steps! She made it up the steps but as we took the last step into the house she was too tired and we experienced what I like to call a "controlled fall". So as we sat and giggled a little because we were sitting in the doorway of the house. I attempted to get her up myself with no avail so I called my Dad to help me get her into her wheelchair. Not a very good start! Needless to say I think I will be planning on a ramp in the near future.
Jodi spent most of the day relaxing in her favorite recliner resting bundled up with her blanket. Ashley cooked her supper tonight (eggs and toast) and she has been mother hen all day. She even gave her a bell to ring if she needs anything! She has been awesome with Jodi all day. Nathan was excited to have Mom home but I noticed that when he hugged her, he was a little nervous. I sat down and did her prescription board and got her meds set for the week. Good news about meds is that she is slowly being weened off of the steroid with her last day being Feb 25th. we will truly celebrate that day!! Hopefully with that being done she will lose all the puffiness and get some strength back.
Ashley made a banner for Jodi's homecoming!
Jodi spent most of the day relaxing in her favorite recliner resting bundled up with her blanket. Ashley cooked her supper tonight (eggs and toast) and she has been mother hen all day. She even gave her a bell to ring if she needs anything! She has been awesome with Jodi all day. Nathan was excited to have Mom home but I noticed that when he hugged her, he was a little nervous. I sat down and did her prescription board and got her meds set for the week. Good news about meds is that she is slowly being weened off of the steroid with her last day being Feb 25th. we will truly celebrate that day!! Hopefully with that being done she will lose all the puffiness and get some strength back.
This is Jodi's prescription board so I can keep up with it!
Everything in the house seems to be working well. She is in bed now and we worked on getting in and out of it before she laid down for the night. I am glad that I decided on no hospital bed since she is having no problems with our bed. Hopefully she gets some better sleep tonight than she has had at the hospital.
We already have home health coming tomorrow to continue with her therapy at home. She will be having that along with speech 3 times a week.
Well it has been a long 2 1/2 weeks and we are very happy to have Jodi home. I am sure she will work hard in these coming weeks to get ready for our trip Feb. 1st.
Look for more promising updates!
Continue to Believe,
Kurt
Wednesday, January 16, 2013
The Roller Coaster of Life: (Surgery, Rehab, a Trip to Vegas & THE CONCERT) ---- 1/16/2013
This is Delight - Jodi's mom. I have the privilege of typing her words. This is the first time I have been asked to blog for her because she has difficulty typing and visually focusing. I am sitting next to Jodi at the computer in the Rehab Unit and she will tell me what to type.
Where do I begin? I had brain port surgery on Wedmesday, January 2nd. This surgery did not turn out as we had expected. Had some complications - weakness of the left side of my body and my speech was affected. The doctors felt that it would be beneficial for me to spend some time in the Rehab Unit at MGH. They say that I am progressing very well. Even though, I doubt it because it is hard for me to get the words out -- I think I sound funny because my speech is slurred and Ashley said that I sound a little drunk. This could be happening because of my meds.
Baby Steps: I hope to get back to normal with my speech as I am attending speech therapy here.. They are also weaning me off of some meds. I continue to make progress with strengthening my left side (use of my left arm and leg) through both occupational and physical therapy.
During this time a lot of people are sick that I know, including my husband, son, and my mother-in-law. Hopefully this flu bug will pass quickly.
I have made quite a few new friends while in the Unit. We have shared life experiences and I will treausre our friendships. I want to thank all the neurosurgery staff, the many nurses, the rehab staff and therapists, family, friends, and the MARESA staff, for all their support and encouragement. I continue to "BELIEVE"!!!
If you have been reading my blog, you know that I have a Bucket List. One of my goals in life was to see George Strait in concert. At Christmas, my parents gave Kurt and I tickets to Vegas and wanted to take us to the George Strait Farewell Tour Concert with Martina McBride. We could buy tickets for the concert but it would have been very expensive. We were fortunate to be able to contact a friend who works in player development at the Hard Rock, who was able to arrange for us to get 4 tickets for the concert. THANK YOU TONY FOR MAKING THIS DREAM COME TRUE!!!!!
Where do I begin? I had brain port surgery on Wedmesday, January 2nd. This surgery did not turn out as we had expected. Had some complications - weakness of the left side of my body and my speech was affected. The doctors felt that it would be beneficial for me to spend some time in the Rehab Unit at MGH. They say that I am progressing very well. Even though, I doubt it because it is hard for me to get the words out -- I think I sound funny because my speech is slurred and Ashley said that I sound a little drunk. This could be happening because of my meds.
Baby Steps: I hope to get back to normal with my speech as I am attending speech therapy here.. They are also weaning me off of some meds. I continue to make progress with strengthening my left side (use of my left arm and leg) through both occupational and physical therapy.
During this time a lot of people are sick that I know, including my husband, son, and my mother-in-law. Hopefully this flu bug will pass quickly.
I have made quite a few new friends while in the Unit. We have shared life experiences and I will treausre our friendships. I want to thank all the neurosurgery staff, the many nurses, the rehab staff and therapists, family, friends, and the MARESA staff, for all their support and encouragement. I continue to "BELIEVE"!!!
If you have been reading my blog, you know that I have a Bucket List. One of my goals in life was to see George Strait in concert. At Christmas, my parents gave Kurt and I tickets to Vegas and wanted to take us to the George Strait Farewell Tour Concert with Martina McBride. We could buy tickets for the concert but it would have been very expensive. We were fortunate to be able to contact a friend who works in player development at the Hard Rock, who was able to arrange for us to get 4 tickets for the concert. THANK YOU TONY FOR MAKING THIS DREAM COME TRUE!!!!!
Monday, January 7, 2013
She is on a roll!
Jodi had her first full therapy today. The progress she has made in the last couple days have been very encouraging. She is walking with a walker now with help getting up and getting down and I saw her with a big smile today for the first time since surgery. I poked my head in the therapy room when she first went in and wasn't sure if I couldn't stay or not but when her brother John came by he went in and they told him to take a seat so tomorrow I hope to snap a few pictures of her. When I walked in she was on an incline stationary bike listening to George Strait! Of course John was there giving his brotherly support and making her laugh!
Another surprising thing today was that the social worker came and spoke to me and said that they had a meeting about Jodi and decided to shoot for Saturday to have her released. Of course at first I was caught off guard and was a little nervous about her coming home just because of the assistance she needs now but after seeing her progress I cant wait to get her home. She is still nervous to stay on her own so Delight has stayed the last two nights and Auntie Kris is staying with her tonight. I wish I could be with her but I want the kids to stay home at night and I want them to have me get them up in the morning and get them off to school. My parents of course offer to watch them every night but it is some normalcy for them (except not having Jodi home).
Hopefully I can post some pictures of Jodi working hard in therapy and I will continue to update everyone on her progress.
Continue to Believe,
Kurt
P.S. Jodi has her phone now and I am sure she will be checking her Facebook page and my attempt at writing a blog.... If you are on Facebook and are friends with her make sure to post a little note of encouragement and support for her!! I am sure she would appreciate it!!
Another surprising thing today was that the social worker came and spoke to me and said that they had a meeting about Jodi and decided to shoot for Saturday to have her released. Of course at first I was caught off guard and was a little nervous about her coming home just because of the assistance she needs now but after seeing her progress I cant wait to get her home. She is still nervous to stay on her own so Delight has stayed the last two nights and Auntie Kris is staying with her tonight. I wish I could be with her but I want the kids to stay home at night and I want them to have me get them up in the morning and get them off to school. My parents of course offer to watch them every night but it is some normalcy for them (except not having Jodi home).
Hopefully I can post some pictures of Jodi working hard in therapy and I will continue to update everyone on her progress.
Continue to Believe,
Kurt
P.S. Jodi has her phone now and I am sure she will be checking her Facebook page and my attempt at writing a blog.... If you are on Facebook and are friends with her make sure to post a little note of encouragement and support for her!! I am sure she would appreciate it!!
Saturday, January 5, 2013
From the top floor to the 3rd floor
I had to sit here and think how many days it has been since the last blog... All the days seem to have blended together with totally different sleep patterns we have been experiencing lately.
Jodi is now on the 3rd floor in the rehab unit. The good part about this is she is no longer monitored and kept awake as much. Dont get me wrong the girls and guys on the 8th floor have been great, but it has been a zoo up there! Jodi has always been lucky in the past to have her own room until this time where she had to share a room and it definately makes a difference in privacy. We had a good chuckle the other night, she was sleeping and I went and sat in the lounge, when I returned she was awake and gave me a curious look. She looks at me and says, "I thought you were in the next bed". Well, her roomate was an elderly woman and I was very surprised that a woman that small could snore that loud!
Jodi was moved to the rehab unit today around noon. The rooms are very nice and spacious and she will get some good rest. She was very tired today and we are seeing a difference in her speech and left side strength. Delight has been staying overnight the last couple nights because Jodi has been a little worried about staying alone. Hopefully this will pass but I think Delight has been enjoying taking care of her little girl again. The kids are staying home with me for the first night since her surgery. My parents have been watching them and I can not say how much I appreciate them! After long days at the hospital I would come let the dog out and sleep for a couple hours at a time and then head back. I have to say that it is nice to be home with them.
Ashley had the chance to talk to Jodi tonight on speaker phone, short and sweet but they got to hear each others voice. I think Jodi is a little nervous to see them because of how her speech is and not being able to walk. We are going to try to sneak them in somehow for a bit tomorrow since there is still very strict visiting rules at the hospital due to the Flu breakout recently in the area.
Nathan doesnt talk much about it, he has handled this very differently, I think he is a lot like me where it really takes a lot to talk about what bothers him. Even the dog has been whining quite a bit since Jodi hasnt been home.
Jodi will start therapy tomorrow, she has the goal of being 100% for our Vegas trip in February that was given to us from Bruce and Delight for Christmas. Us four (Bruce, Delight, Jodi, and I) will be going for three nights and seeing George Strait with Martina Mcbride. Jodi has been a huge fan of Goerge Strait and seeing Martina is an added bonus. She seems a little down and has said that she never thought this would happen (rehab), but after five craniotomy's the brain can only take so much.
If anyone would bounce back it will be Jodi!
Once again I will keep the blog posted and Thank you all for the well wishes.
Continue to Believe,
Kurt
Jodi is now on the 3rd floor in the rehab unit. The good part about this is she is no longer monitored and kept awake as much. Dont get me wrong the girls and guys on the 8th floor have been great, but it has been a zoo up there! Jodi has always been lucky in the past to have her own room until this time where she had to share a room and it definately makes a difference in privacy. We had a good chuckle the other night, she was sleeping and I went and sat in the lounge, when I returned she was awake and gave me a curious look. She looks at me and says, "I thought you were in the next bed". Well, her roomate was an elderly woman and I was very surprised that a woman that small could snore that loud!
Jodi was moved to the rehab unit today around noon. The rooms are very nice and spacious and she will get some good rest. She was very tired today and we are seeing a difference in her speech and left side strength. Delight has been staying overnight the last couple nights because Jodi has been a little worried about staying alone. Hopefully this will pass but I think Delight has been enjoying taking care of her little girl again. The kids are staying home with me for the first night since her surgery. My parents have been watching them and I can not say how much I appreciate them! After long days at the hospital I would come let the dog out and sleep for a couple hours at a time and then head back. I have to say that it is nice to be home with them.
Ashley had the chance to talk to Jodi tonight on speaker phone, short and sweet but they got to hear each others voice. I think Jodi is a little nervous to see them because of how her speech is and not being able to walk. We are going to try to sneak them in somehow for a bit tomorrow since there is still very strict visiting rules at the hospital due to the Flu breakout recently in the area.
Nathan doesnt talk much about it, he has handled this very differently, I think he is a lot like me where it really takes a lot to talk about what bothers him. Even the dog has been whining quite a bit since Jodi hasnt been home.
Jodi will start therapy tomorrow, she has the goal of being 100% for our Vegas trip in February that was given to us from Bruce and Delight for Christmas. Us four (Bruce, Delight, Jodi, and I) will be going for three nights and seeing George Strait with Martina Mcbride. Jodi has been a huge fan of Goerge Strait and seeing Martina is an added bonus. She seems a little down and has said that she never thought this would happen (rehab), but after five craniotomy's the brain can only take so much.
If anyone would bounce back it will be Jodi!
Once again I will keep the blog posted and Thank you all for the well wishes.
Continue to Believe,
Kurt
Thursday, January 3, 2013
A New Year with new results
I was hoping Jodi would of done her trademark "day after brain surgery blog", but after this one, she has had some complications. She was brought in yesterday morning to have her 5th brain surgery (her second brain port). Everything went as planned like usual with her going to ICU around Noon.
After surgery she was very tired and rested most of the day. Later in the afternoon I noticed that she was having problems with her thought process and speech along with lack of strength of her left side. We were told to wait till she was rested and hope it would come around.
At 9AM this morning they took her down for a MRI and we spoke to the Dr.'s P.A. She stated that she could definitely see some issues with speech and her immobility of her left side. She also said that she couldn't see Jodi going home until at least through the weekend if not longer. She was finally moved to the 8th floor around 9 PM and could not stand or walk on her own.
She could be admitted into the therapy ward at the hospital and we would go from there. I am sure we will learn more each day.
Also the MRI showed that this tumor was melanoma and with the location of it, they could not get all of it. I am sure we will meet with Doctors and Oncologists in the coming days to see what our next option is
We have been up many ups and downs on this amazing roller coaster ride we have been on for the last year and a half and I am sure with Jodi's amazing strength we'll be on the up swing soon. As I sit here I think about the day we sat here and tried to come up with a name of this blog "an Amazing Brain", I feel it should of been called"An Amazing Brain, Woman, Family, Friends, Community, and Doctors" because we have all been taught so much since that day in May 2011. Now I believe Jodi will surprise us all again and be back to what she has amazed us with through this journey. She is by far the most amazing person I have ever known and am sure she has taught many many people she has came in contact with in the last 18 months what the true meaning of the strength of positive attitude and never giving up.
I will keep everyone who reads this blog updated on day to day activities with Jodi and her progress. I am very surprised that she has not asked for her cell phone yet because we all know that she loves to keep you all informed of how she is doing! Thank you all for all the kind words and messages I have received in these last two days. You will never know how grateful our family is.
Continue to Believe,
Kurt
After surgery she was very tired and rested most of the day. Later in the afternoon I noticed that she was having problems with her thought process and speech along with lack of strength of her left side. We were told to wait till she was rested and hope it would come around.
At 9AM this morning they took her down for a MRI and we spoke to the Dr.'s P.A. She stated that she could definitely see some issues with speech and her immobility of her left side. She also said that she couldn't see Jodi going home until at least through the weekend if not longer. She was finally moved to the 8th floor around 9 PM and could not stand or walk on her own.
She could be admitted into the therapy ward at the hospital and we would go from there. I am sure we will learn more each day.
Also the MRI showed that this tumor was melanoma and with the location of it, they could not get all of it. I am sure we will meet with Doctors and Oncologists in the coming days to see what our next option is
We have been up many ups and downs on this amazing roller coaster ride we have been on for the last year and a half and I am sure with Jodi's amazing strength we'll be on the up swing soon. As I sit here I think about the day we sat here and tried to come up with a name of this blog "an Amazing Brain", I feel it should of been called"An Amazing Brain, Woman, Family, Friends, Community, and Doctors" because we have all been taught so much since that day in May 2011. Now I believe Jodi will surprise us all again and be back to what she has amazed us with through this journey. She is by far the most amazing person I have ever known and am sure she has taught many many people she has came in contact with in the last 18 months what the true meaning of the strength of positive attitude and never giving up.
I will keep everyone who reads this blog updated on day to day activities with Jodi and her progress. I am very surprised that she has not asked for her cell phone yet because we all know that she loves to keep you all informed of how she is doing! Thank you all for all the kind words and messages I have received in these last two days. You will never know how grateful our family is.
Continue to Believe,
Kurt
Friday, December 21, 2012
NO Tumor? - 12/21/12
I spoke with my neurosurgeon yesterday morning and he thought that what he took out was not a tumor so he sent it for specal staining. I got a phone call this afternoon from his nurse saying that he got a call from the neurosurgeon who wanted me to know before the holiday that it was not a tumor but necrosis from previous radiation. I need to talk to him as we aren't sure whet exactly that means but I know I feel SO much better!
They also indicated the 2nd brain port surgery could be as soon as the day after Christmas - I opted to go with the following week so am currently scheduled to have my second surgery on the 2nd of January! They had a HARD time putting an IV in my left arm in the OR so I'm really bruised after four ultrasounds to get it - I'd like to heal a bit if they have as much trouble!
I'll update as I learn more about the necrosis and my brain port surgery!
Happy Holidays! I plan to enjoy it with my family.
And... for those who haven't heard, Kurt and I got our Christmas present early (well we found out about it); we got plane tickets to Las Vegas at the beginning of February to hopefully see George Strait/Martin McBride along with my parents ... a dream come true in my eyes. This would be one of my bucket list items ;) I've always LOVED George Strait.., and this is his farewell tour! And the added bonus is Martina McBride!
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