It's hard to believe it's been nearly a month since my last post. As you know Joe was going to Carousel Ranch to ride in Beau's place on Beau's birthday. He did great and he enjoyed riding much more than he thought he would. We took him back for more on Friday, January 28 (which was also our 22nd wedding anniversary). He did even better this time. His upper body was a little sore the following day but it was that good kind of hurt that you have after you work out; he hadn't had that feeling for much too long!
The day as a whole was a difficult one, however, the celebration of our marriage got kind of lost in Joe's health issues. That day for us has always been about looking back at our life together and then looking forward at what's to come in our life together. I was emotional all day.
Over the weekend Joe started having some new symptoms that would land him in the hospital for the past 12 days. The first thing that started happening was that he would have these muscle spasms or cramps that apparently go along with paraplegia. They made him very uncomfortable but they seemed to pass quickly. By Wednesday 2/2/11 he felt as though he had a constant cramp in his abdomen. We needed to see the dermatologist that day so he could remove an 'infected hair folicle'. We went from there to the internist who then sent us directly to Northridge hospital.
Joe had developed quite a lot of fluid in his abdomen which was causing that feeling of a constant cramp. By Friday 2/4 it was necessary for Joe to have the fluid drained. The first 'tap' they got 4 litres. The following day, Saturday, they got 1.5 litres. On Tuesday 3.5 and Friday, 2/11 they drained another 4.5 litres from Joe's abdomen. He is obviously filling up quickly and you can't keep draining him like this because it taxes his system, especially his kidney.
Where is this fluid coming from and why does it keep coming back? It is likely due to the cancer and that means that the first drug they've been using to fight it hasn't been working. And also, remember the 'infected hair folicle'? Well it was not...it was another matastesis of the renal cancer. Most cancers do not go from an organ to the skin but renal cancer is one that can and in Joe's case it has.
So last Wednesday Joe started on a new drug. The hope is that this new drug will help the fluid to circulate in Joe's system the way it should. And ultimately the drug should attack each renal cell that is infected with cancer.
Needless to say this is major set back and very unexpected. Joe is tired and weak. He is very restricted on fluid intake and has very little appetite. This latest hospital stay has rocked my foundation a bit, I must admit. We would love to experience some positive change in this journey. This is a very scary turn for him, and AJ and I for that matter. Our prayer is that this drug will work quickly so that draining this fluid is no longer necessary and that the spots of cancer will shrink.
We continue to have hope and know that God is in control. Thank you again for your prayers and constant support! Love, Teri
Monday, February 14, 2011
Friday, January 21, 2011
Happy Birthday Beau!!!
It has been so long since I've written and until I sat down and read a bit of the earlier posts I didn't realize how much I've missed it. Life at home is so full of 'have to get dones' that there never seems to be opportunity to collect my thoughts and feelings much less put them in writing. I am committed to continuing this Blog though so my hope is that as things continue to settle I will make more time to write. I had every intention of filling you in on the past month, Joe's first month at home, but as it turns out that will have to wait until later today. The morning is slipping away quickly!!!
As you see from my title, it is Beau's birthday. He would have turned 19 today. What I do want to share is that we are celebrating Beau in a very specail way! We are going to Carousel Ranch (where he used to have Equestrian Therapy) and his dad is going to ride in time spot. As I write I am suddenly overcome by emotions that have oddly been dorment for the past few weeks. I miss Beau-bi but have so little time to realize it.
Today will be a very challenging experience for Joe. He is fearful to some degree because the issue of balance or rather, the lack there of, is such a vulnerable feeling. He will be in good hands though. Becky and all her support staff at the ranch will make riding on a horse a positve experience. I will definetly give the play by play and have some pictures to share later.
Thank you for continuing to follow us in this journey through your thoughts, prayers, reading of our story here in the blog and so many other ways you support us when you have no idea you're even doing it!!
Much Love, Teri
As you see from my title, it is Beau's birthday. He would have turned 19 today. What I do want to share is that we are celebrating Beau in a very specail way! We are going to Carousel Ranch (where he used to have Equestrian Therapy) and his dad is going to ride in time spot. As I write I am suddenly overcome by emotions that have oddly been dorment for the past few weeks. I miss Beau-bi but have so little time to realize it.
Today will be a very challenging experience for Joe. He is fearful to some degree because the issue of balance or rather, the lack there of, is such a vulnerable feeling. He will be in good hands though. Becky and all her support staff at the ranch will make riding on a horse a positve experience. I will definetly give the play by play and have some pictures to share later.
Thank you for continuing to follow us in this journey through your thoughts, prayers, reading of our story here in the blog and so many other ways you support us when you have no idea you're even doing it!!
Much Love, Teri
Friday, December 17, 2010
There's No Place Like HOME!!!
There's No Place Like Home!! There's No Place Like Home!! ""Toto, we are definetly not in Kansas anymore". We made it through the first full day of Joe being home. We got him all settled in and ready for the day by 7:45a and then I was off to work. Organizing his medications took us a long time. For that matter everything takes a long time.He has several things that need to be done or taken all through the day. A nurse from a home health agency came in to acess him followed by a lunch drop off, a phyical therapist visit and another visitor in the evening. As I write AJ is in route home from Colorado. He was accepted to Cal State Channel Islands and will beging taking classes there this spring. This is the best!! Truly a gift from God that he will have such a seamless transition. We are really looking forward to the Show for Uncle Joe this Sunday. It will be nice to sit back and be entertained for a while. I am so tired tonight....I will write more tomorrow(hopefully) because there is much more to tell. |
Thursday, December 2, 2010
The SHOW for UNCLE JOE
This is yet another example of what an amazing support system we have!!
There are so many of you putting so much of your heart (and time and sweat) into this.
This will be fun to see so many gathered together for Joe.
Please join us......
He will love it.
Thank you!!
Check out the web site: http://www.unclejoeshow.com/
There are so many of you putting so much of your heart (and time and sweat) into this.
This will be fun to see so many gathered together for Joe.
Please join us......
He will love it.
Thank you!!
Check out the web site: http://www.unclejoeshow.com/
First Overnight Home Visit
In my last post I failed to mention that AJ was home from school for the weekend. This was the first time he'd been home since he was home for his brother Beau's funeral in September. It was great to have him home for a few days. He will return after finals in a couple of weeks. YIPEE!!
Joe's overnight visit was wonderful and difficult at the same time. Wonderful because he hadn't been home (for more than a few hours) in the past six weeks and I just loved having him here. There was a lot of emotion because I miss him and can't wait to have him home permanently. It was difficult because he hadn't been home (for more than a few hours) in the past six weeks and there's that little thing called 'reality' and this visit was a true glimpse of what life is going to look like once he is able to be home permanently.
I stuggle with what to even blog about when I think about how life will be in a very short time. We will make it through this transition. Afterall, there will be that thing called 'cancer treatment' to distract us. There has been so much else up to now that I sometimes almost forget that these days may well be easier then what's to come.
By the end of the week it sounds like the doctors will start Joe on the anti-cancer drug protocol . These drugs work in the body differently then some chemo drugs so the side effects will be different too. And all patients respond differently as well. We will prepare the best we can. At least he will be in the hospital in the beginning of treatment.
The doctors have decided that it will be best to wait a few months for Joe to have his shoulder surgery. They agree that he needs to finish Rehab for his legs doing the best he can while favoring the injured shoulder. This allows them to begin the drug protocol sooner than later. At this time they're looking at Feb 2011 for surgery.
Joe's overnight visit was wonderful and difficult at the same time. Wonderful because he hadn't been home (for more than a few hours) in the past six weeks and I just loved having him here. There was a lot of emotion because I miss him and can't wait to have him home permanently. It was difficult because he hadn't been home (for more than a few hours) in the past six weeks and there's that little thing called 'reality' and this visit was a true glimpse of what life is going to look like once he is able to be home permanently.
I stuggle with what to even blog about when I think about how life will be in a very short time. We will make it through this transition. Afterall, there will be that thing called 'cancer treatment' to distract us. There has been so much else up to now that I sometimes almost forget that these days may well be easier then what's to come.
By the end of the week it sounds like the doctors will start Joe on the anti-cancer drug protocol . These drugs work in the body differently then some chemo drugs so the side effects will be different too. And all patients respond differently as well. We will prepare the best we can. At least he will be in the hospital in the beginning of treatment.
The doctors have decided that it will be best to wait a few months for Joe to have his shoulder surgery. They agree that he needs to finish Rehab for his legs doing the best he can while favoring the injured shoulder. This allows them to begin the drug protocol sooner than later. At this time they're looking at Feb 2011 for surgery.
Wednesday, December 1, 2010
Thanksgiving Day
We did it! Joe got to go to the Car Show on the morning of Thanksgiving. He had hoped to see what there was in the way of adaptive equipment now that he is in a wheelchair and will need to modify a vehicle but there wasn't much information available. Not to worry though, he found lots of great cars to look at! He got around pretty well. He did get tired so by the end of the morning he needed some help pushing his wheelchair.
After the Car Show we went home to have turkey. Joe didn't do the cooking but enjoyed being at home with family and hanging out on the couch. He returned to Northridge Hospital about 8 PM.
Friday Joe had the opportunity to cook for the staff of therapists at the hospital. He made tacos, beans and rice. This was his occupational therapy for that day. The idea is for him to function in the kitchen in his chair and start getting used to doing things so differently. We both learned a lot! There are so many things to take into consideration. Working from a different level creates a whole new dynamic. Lifting pans and seeing what you're cooking are just two of the very significant adjustments he will have to make.
Side note:
Joe continues to have a great attitude more times than not. One example I just have to share happened while he was cooking. Helping Joe with the cooking was his new friend, Gilberto. Gilberto is approx 30 years old and has two young children. He has been in the Rehab center for close to three months. He fell out of a tree while working and is also now a paraplegic. The times that I've seen Gilberto he is always serious and I hadn't seen him smile. Joe was so encouraging to him. It was clear that Gilberto hasn't spent as much time in the kitchen as Joe and that gave Joe opportunity to teach him. When he was cooking with Joe he seemed to be having fun, they were even joking around a bit. At one point Joe even told him, "Gilberto, you should learn how to cook. We're gonna have more time on our hands and you're gonna need something to do." I don't know if Gilberto will take up cooking but the comment sure put a smile on his face.
The day ended with Joe looking forward to his first overnight visit...he was coming home Saturday to Sunday.
After the Car Show we went home to have turkey. Joe didn't do the cooking but enjoyed being at home with family and hanging out on the couch. He returned to Northridge Hospital about 8 PM.
Friday Joe had the opportunity to cook for the staff of therapists at the hospital. He made tacos, beans and rice. This was his occupational therapy for that day. The idea is for him to function in the kitchen in his chair and start getting used to doing things so differently. We both learned a lot! There are so many things to take into consideration. Working from a different level creates a whole new dynamic. Lifting pans and seeing what you're cooking are just two of the very significant adjustments he will have to make.
Side note:
Joe continues to have a great attitude more times than not. One example I just have to share happened while he was cooking. Helping Joe with the cooking was his new friend, Gilberto. Gilberto is approx 30 years old and has two young children. He has been in the Rehab center for close to three months. He fell out of a tree while working and is also now a paraplegic. The times that I've seen Gilberto he is always serious and I hadn't seen him smile. Joe was so encouraging to him. It was clear that Gilberto hasn't spent as much time in the kitchen as Joe and that gave Joe opportunity to teach him. When he was cooking with Joe he seemed to be having fun, they were even joking around a bit. At one point Joe even told him, "Gilberto, you should learn how to cook. We're gonna have more time on our hands and you're gonna need something to do." I don't know if Gilberto will take up cooking but the comment sure put a smile on his face.
The day ended with Joe looking forward to his first overnight visit...he was coming home Saturday to Sunday.
Wednesday, November 24, 2010
Tid Bits
We received the report of the repeated MRI late last week but were just able to talk with the doctor yesterday. Apparently the pain Joe has been experiecing in his back is from inflamation resulting from the radiation treatments he received weeks ago. The doctor decided to put him back on steroids for a bit longer. This should help the inflamation decrease and it seems to have helped decrease the pain already. As for the tumor, it measures just a mm smaller than the last test. It is still unclear whether they feel the tumor is completely dead or not. We still need to wait and see what the body does. Meanwhile, Joe has very little to no movement below T-7/T-8.
Over the past weekend Joe decided he wanted to cook. So he prepared dinner Sunday evening. We ate together and then shared the leftovers with the nursing staff. They loved it and I could tell Joe really enjoyed doing something for them.
Monday was a busy day. Joe was fitted for his wheelchair. A couple of friends came to the house to measure for ramps, etc. and we practiced transfers from his chair to the FJ Cruiser and back again several times. I passed the 'test' and then it was confirmed that he could definitely come home for the day on Thanksgiving.
We also received the complete results of the pathology report from Joe's kidney. The kind of cancer that Joe has is the type that can respond the IL2 treatment at UCLA that I have mentioned before. The bad news is that the doctor at UCLA that administers the drug says that since Joe has a tumor inside the spinal cord it would not be the best approach for him. While this treatment is very toxic and invasive, it is said to be the best chance for anything close to a cure.What ever drug treatment Joe will go on we are hoping to start ASAP.
Lastly, it seems that Joe has torn his rotater cuff. He had a little accident in Physical Therapy last Friday and after an MRI late yesterday he was told that, yes, it is torn and that down the road he will likely need surgery to repair the damage.
That's about it for today.
I can't thank you enough for keeping up on Joe through this blog.
I appreciate your patience with me when I don't Post for a few days.
Best to you, Teri
Over the past weekend Joe decided he wanted to cook. So he prepared dinner Sunday evening. We ate together and then shared the leftovers with the nursing staff. They loved it and I could tell Joe really enjoyed doing something for them.
Monday was a busy day. Joe was fitted for his wheelchair. A couple of friends came to the house to measure for ramps, etc. and we practiced transfers from his chair to the FJ Cruiser and back again several times. I passed the 'test' and then it was confirmed that he could definitely come home for the day on Thanksgiving.
We also received the complete results of the pathology report from Joe's kidney. The kind of cancer that Joe has is the type that can respond the IL2 treatment at UCLA that I have mentioned before. The bad news is that the doctor at UCLA that administers the drug says that since Joe has a tumor inside the spinal cord it would not be the best approach for him. While this treatment is very toxic and invasive, it is said to be the best chance for anything close to a cure.What ever drug treatment Joe will go on we are hoping to start ASAP.
Lastly, it seems that Joe has torn his rotater cuff. He had a little accident in Physical Therapy last Friday and after an MRI late yesterday he was told that, yes, it is torn and that down the road he will likely need surgery to repair the damage.
That's about it for today.
I can't thank you enough for keeping up on Joe through this blog.
I appreciate your patience with me when I don't Post for a few days.
Best to you, Teri
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