Halleluiah???? It is wonderful and terrible but .......... Heather is finally free of the pain and aggravation.
We, as the family of Heather, want to thank each and every one of you that have prayed and/or thought about Heather and her family during the last three months. Theses days, as you can imagine, have been the toughest of our lives but also the best of our lives.
As Heather's brother, I saw from the first bout of cancer, how devastating the diagnosis and treatment can be. I also saw how it can make one very close family even closer. What could have possibly happened this time? It made two families closer. Imagine that, the worst possible news that anyone could get and yet ..... there is good news also.
Following Jim's last message , the Rituxamab that we all hoped would work, didn't. Her lungs, kidneys and blood had just taken too much abuse from the previous treatments. The one thing that we can be thankul for is that the doctors were able to learn a little bit more about this extremely rare condition that fell on her. Heather past away in her sleep on Sunday, June 1, peacefully.
As the family of Heather, through many tears but also much laughter, we want to thank all of you for your concerns, well wishes and prayers. This will be the final entry to the amazing account of Heather's courageous battle and can only hope that each and every one of you will remember her as we will, STRONG.
Ryan Newell
Services will be held on June 6,2008 at 2pm at the First United Methodist Church in Waynesville,NC.
Tuesday, June 3, 2008
Thursday, May 29, 2008
Rituximab
Another crazy heart-wrenching week. Heather continues to struggle with her breathing and kidneys. She sleeps alot and I try to make sure she is comfortable. Drugs are a good thing though I know Heather would prefer not to use them. She needs to rest and if it means with some help, it means with some help. Talking to the nurses, she won't get addicted. Once she is out of pain and discomfort, she won't want the drugs. She is very worried about it.
The source of her troubless seems to be TTP, a blood disorder where the b-cells of her blood destroys the red blood cells and platelets. This is causing kidney failure and the lungs to struggle to recover. It is a very difficult issue to treat as it is rare in and of itself and even more rare for transplant patients. Therefore, limited research has been done and no known truly effective treatment. We are trying to use a immune-suppressent drug called Rituximab - a chemo used frequently for leukemia patients. It has been used 5 times before on transplant patients and has shown some success. Really not any other options. Rituximab attacks the B-cells and the hope is it will allow her body to reset itself. Then we can attack the kidney issues and try to heal her lungs. We continue to move forward on starting dialysis again. Prayers are always helpful.
I also think God talked to me today as I have been really struggling to hold onto hope and positive thoughts. Being part German, I can get stingy and don't like to waste money so I asked to have the oxygen equipment taking out of the apartment as it is costly to have. Especially knowing it will still be a while for Heather to get out of the hospital. The company called me yesterday to schedule a pick-up but I missed the call. Tried this morning and they said that they has no order to remove?! I believe God is telling me to hold on a minute - she is going to need it whe nshe gets back. I do believe this so keep the prayers rolling. Heather is going to prove everyone wrong again and beat the odds!!!
Jim
The source of her troubless seems to be TTP, a blood disorder where the b-cells of her blood destroys the red blood cells and platelets. This is causing kidney failure and the lungs to struggle to recover. It is a very difficult issue to treat as it is rare in and of itself and even more rare for transplant patients. Therefore, limited research has been done and no known truly effective treatment. We are trying to use a immune-suppressent drug called Rituximab - a chemo used frequently for leukemia patients. It has been used 5 times before on transplant patients and has shown some success. Really not any other options. Rituximab attacks the B-cells and the hope is it will allow her body to reset itself. Then we can attack the kidney issues and try to heal her lungs. We continue to move forward on starting dialysis again. Prayers are always helpful.
I also think God talked to me today as I have been really struggling to hold onto hope and positive thoughts. Being part German, I can get stingy and don't like to waste money so I asked to have the oxygen equipment taking out of the apartment as it is costly to have. Especially knowing it will still be a while for Heather to get out of the hospital. The company called me yesterday to schedule a pick-up but I missed the call. Tried this morning and they said that they has no order to remove?! I believe God is telling me to hold on a minute - she is going to need it whe nshe gets back. I do believe this so keep the prayers rolling. Heather is going to prove everyone wrong again and beat the odds!!!
Jim
Wednesday, May 21, 2008
Pin cushion
Hello again,
Heather has had a couple of good days this week. Sister Kim and mom brought Kylie back and spend time with Heather. What a boost!!!! You can see Heather light up when they come into her room. Of course, seeing our daughter was a hugh bost for me. I fight with the fact that I can't keep me family together. While I know the circumstances are out of my control, it still hurts and is frustrating.
Today was very busy and probably the most hectic for Heather. I could tell right away that she was tired when we arrived in her rom this morning. After rounds by docs, we were told that some other docs would be seeing her. Little did we realize to what extent. It started with the replacement of her trach tube with a smaller more comfortable tube. Not sure how any tube in your throat can be comfortable but.... x-ray shows right lung clearing up (yeah!!) but fluid near left lung. Kidney functions are tanking according to the reports (eyes still jauntice so it must be true) so they have kidney specialists here. Also, have strange blotches on her left arm so the sent in dermatologist to look. Look must be doctor talk to poke, prod and cut. While the ultrasounds are comfortable, let's talk about all the holes we had put in her. Did a skin biopsy on her arm to see what the blotches are. Basicly a cookie cutter 3 mm wide twisted into her arm and then pull out the skin. Sucture close. Need unbiased blood draw for kidneys - hey no one has messes with her feet, let's go there. Two draws- one each on top of each foot. Let's look at her lung, hmm... ultrasound shows fluid, let's do a needle biosy to draw some out to see if it is infection or something else. Another poke! While we are here, let's draw out the fluid. Ended up with almost a full liter of fluid pulled out of her left lung. Don't know how she does it. She is the most remark-able woman I have ever met. I hope she feels all the love I have for her. Gave her pain meds to keep her comfortable and let her sleep. Time to go. Keep the prayers coming. Hopefully, we have turned the corner. God bless you.
Jim
Heather has had a couple of good days this week. Sister Kim and mom brought Kylie back and spend time with Heather. What a boost!!!! You can see Heather light up when they come into her room. Of course, seeing our daughter was a hugh bost for me. I fight with the fact that I can't keep me family together. While I know the circumstances are out of my control, it still hurts and is frustrating.
Today was very busy and probably the most hectic for Heather. I could tell right away that she was tired when we arrived in her rom this morning. After rounds by docs, we were told that some other docs would be seeing her. Little did we realize to what extent. It started with the replacement of her trach tube with a smaller more comfortable tube. Not sure how any tube in your throat can be comfortable but.... x-ray shows right lung clearing up (yeah!!) but fluid near left lung. Kidney functions are tanking according to the reports (eyes still jauntice so it must be true) so they have kidney specialists here. Also, have strange blotches on her left arm so the sent in dermatologist to look. Look must be doctor talk to poke, prod and cut. While the ultrasounds are comfortable, let's talk about all the holes we had put in her. Did a skin biopsy on her arm to see what the blotches are. Basicly a cookie cutter 3 mm wide twisted into her arm and then pull out the skin. Sucture close. Need unbiased blood draw for kidneys - hey no one has messes with her feet, let's go there. Two draws- one each on top of each foot. Let's look at her lung, hmm... ultrasound shows fluid, let's do a needle biosy to draw some out to see if it is infection or something else. Another poke! While we are here, let's draw out the fluid. Ended up with almost a full liter of fluid pulled out of her left lung. Don't know how she does it. She is the most remark-able woman I have ever met. I hope she feels all the love I have for her. Gave her pain meds to keep her comfortable and let her sleep. Time to go. Keep the prayers coming. Hopefully, we have turned the corner. God bless you.
Jim
Sunday, May 18, 2008
Crazy May
Hello everyone,
You will find this posting not to be in the same fashion as all the rest - mainly because it's not Heather writing to you. It's her husband Jim. Sorry this has been long overdue but as most of you know, Heather has been in the hospital.
First and foremost, THANK YOU for all of the love, support and prayers. we couldn't do it without you. The past two to three weeks have been an extreme ride for all of us - worse than the BORG...While not wanting to get into too many details, I wanted to bring everyone up to date. What started as a little discomfort breathing turned into a fight for her life. We spent a week at 9200, isolation wing at Duke for BMT patients. Heather was great but wasn't horrible either. That changed abruptly on May 6 - she had a "white out" which basicly means she couldn't catch her breath and they had to intibate her -put a tube down her throat. Come to find out that her lungs were bleeding as a side effect from the chemo and she was drowning in her own fluids. They were able to get her stabilized and drain most of it. As we all know, Heather does nothing the easy way!! Up and down from then on. What helps the lungs hurts the kidneys. What helps the liver hurts the lungs. A balancing act ensued. Took the tube out three times (once by Heather that wasn't planned by the docs) but unable to keep her lungs working right. Decision was made to give her a trach tube to help wean her lungs off ventilator. She got it this past Friday. She is definitely more comfortable and moving ever so slightly forward. Today has been the best so far. After the 2-4:30 pm quiet time where they kick all visitors out of ICU, I returned to find Heather alert and trying to communicate. Lip reading was not on my college cirriculum so it has been difficult but possible. Proof being I was able to get her password to the blog with no words said. She seems to have taking a turn to the good and the spark of Heather shined today. Please keep her in your prayers.
PS Soon, I hope to be her typist and have her dictate her own message to everyone.
You will find this posting not to be in the same fashion as all the rest - mainly because it's not Heather writing to you. It's her husband Jim. Sorry this has been long overdue but as most of you know, Heather has been in the hospital.
First and foremost, THANK YOU for all of the love, support and prayers. we couldn't do it without you. The past two to three weeks have been an extreme ride for all of us - worse than the BORG...While not wanting to get into too many details, I wanted to bring everyone up to date. What started as a little discomfort breathing turned into a fight for her life. We spent a week at 9200, isolation wing at Duke for BMT patients. Heather was great but wasn't horrible either. That changed abruptly on May 6 - she had a "white out" which basicly means she couldn't catch her breath and they had to intibate her -put a tube down her throat. Come to find out that her lungs were bleeding as a side effect from the chemo and she was drowning in her own fluids. They were able to get her stabilized and drain most of it. As we all know, Heather does nothing the easy way!! Up and down from then on. What helps the lungs hurts the kidneys. What helps the liver hurts the lungs. A balancing act ensued. Took the tube out three times (once by Heather that wasn't planned by the docs) but unable to keep her lungs working right. Decision was made to give her a trach tube to help wean her lungs off ventilator. She got it this past Friday. She is definitely more comfortable and moving ever so slightly forward. Today has been the best so far. After the 2-4:30 pm quiet time where they kick all visitors out of ICU, I returned to find Heather alert and trying to communicate. Lip reading was not on my college cirriculum so it has been difficult but possible. Proof being I was able to get her password to the blog with no words said. She seems to have taking a turn to the good and the spark of Heather shined today. Please keep her in your prayers.
PS Soon, I hope to be her typist and have her dictate her own message to everyone.
Monday, April 28, 2008
Back to the Hospital
I'm getting ready to head back to the hospital in just a few minutes. For some reason my red blood cells and platelets have begun to breakdown...my understanding is that it's called TTT. I have to go into the hospital and do some sort of plasma treatment. I don't have much info at this point about it. So I won't be online for the next several days but wanted to throw a quick update.
Thursday, April 24, 2008
Confusion
I have a friend Kevin who is also battling Hodgkin's lymphoma. He said just recently that he's just tired of the chemo and the nausea and the fatigue. I feel the exact same way. I'm just over the body aches the most...it's all so emotionally and physically exhausting. With me, it's not as if the body aches themselves are completely miserable, but you can't imagine have much it breaks down the spirit and the mind. Jim is constantly asking why I postpone or even refuse to take my pain meds when they do ease both the pain and I guess it's pretty much depression that comes with the pain...but I really haven't been able to explain or understand myself why. The pain meds are narcotics because I'm not allowed Tylenol or anything like that that will mask a fever. There's just something about taking the narcotics on a regular basis that bugs me. I'm taking low dosages and not abusing it so it's not like I'm worried that I'll become addicted. There's a lot about this battle that I don't necessarily understand my own mind processes and thoughts.
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