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AMMON'S STORY Information from Betsey (Ammon’s Wife): Monday, March 24, 2008 Well, a lot of time has passed since I have given an update. It is crazy to read back to ealier dates and remember what was happening. Have we really moved on from those scary days? Ammon is doing great. Just in the last 2 months we have seen a lot of progress. All of his tests in November came back clean. Once we moved back, Ammon's next goal was to get to work as much as possible. For awhile, he got there about half the time. We started to notice that he was very very cold and tired. We thought that after so much time, these symptoms would go away. They checked his thyroid and it was 285. (Normal is below 5) So they put him on those meds to try to help. Because his pituitary gland was severely radiated, it couldn't read his thyroid levels correctly. So we are still currently in the process of figuring that out. We just put away the heating blanket so we are one step closer. One of Ammon's biggest frustrations is his stomach. It just never seems to feel right. I think not eating for 6 months and being radiated there have really done some damage to his system. In early February, Ammon started to have headaches again. The same ones that he had before we found out it was a tumor. This really scared both of us as we knew that this tumor could very easily grow back. So they moved up his MRI to see if anything was back. It was such an intense day, but we were so grateful to get good results. I asked Dr. Ashby if she had any idea how good it felt to get these kind of results. Even though she tells people good results all the time, I was curious to see if she had any idea how it must feel for us. She said, "You know, I do have an idea - because every other patient of mine today besides you, got bad news today." My heart sank. It was almost hard to be happy for Ammon knowing there were all of those families that had just heard the worst news of their lives and we had just heard the best possible news in ours. And just imagine the difference of moods in the room. It really made us feel so blessed. But now that we are just passed the year mark of finding out about the tumor, we are thankful for Ammon's progress. Although is is very hard to not get impatient and frustrated. One day Ammon will feel great and get in a full day at work, then the very next day, he will need to sleep till noon and have to come home from work early because he feels so sick. His headaches and stomachaches seem to be the biggest problem for him and they are very hard to control. Also frustrating for Ammon is his balance. His coordination continues to be affected heavily but hopefully basketball and golf will soon be a big part of his life again. But if this is worst it gets from here on out, we will deal with it. It is so fun to see Ammon enjoy being a dad and being with the girls. They absolutely adore him. Thank you for your continued support and prayers. Hopefully they will continue to keep the cancer away. We love and appreciate you all. The Lee's. Friday, October 26, 2007 Sorry it has taken so long to update. (I don't know if anyone is even reading this???) Ammon's hospital stay went better than expected. He was in there for a week when I thought he was never going to get out of there. His levels were just staying so low. But Sunday the 7th, his levels went from like 0.5 to 4.2. So we were thrilled and they let him come home the next day. We threw a little party for him to celebrate him coming home from the hospital for the last time. Then we went to St. Johns for his 10 year class reunion. It was so great to see all his friends. Ammon has great supportive friends. On the 17th, we went to see his Dr. for what we call the "NOW WHAT?" visit. Ammon is scheduled for a alot of xrays and scans in a couple weeks and the doctors will go over the results with us and let us know where we go from here. Today, the 26th, Ammon had to go get a scan of his chest. A couple of months ago in the ER, they found some nodules? in his lungs that looked like walking pneumonia. Which is very common, he has no symptoms, but it is very common in hospitals and just by laying around so much. So they are doing more scans to make sure it is not cancer in his lungs. I guess we can't celebrate too much yet. Ammon will go in for his 4 hour MRI Nov. 17th and then again in 3 months. And if these scans come back clean that will increase our odds of this not coming back to 40-50% . We'll take what we can get. We plan to move back to Coolidge Nov. 10th and try to pick up where we left off. We hope to share good news from the results of the scans soon. Sunday, September 30, 2007 Ammon was able to have a couple of good weeks. We went to a ward party in Coolidge and it was so good to see everybody from home. They are so good to us and we can't wait to get back. We even spent the night there for the first time in 9 months. Sunday the 23rd we had a little scare. Ammon went to lay down to go to bed and stepped on his the tubing that goes up to the picc line in his arm and snapped the tubing. At first he thought it was no big deal until blood started dripping out. He couldn't get it to stop. I called his home health nurse to see what we should do and she says that it is possible for the left over tubing to get sucked up into the blood stream and can cause a heart embolism and to get over to the hospital quick. Just then, Ammon comes in the room saying, "Betsey, my heart, my heart. It's pumping so fast. I am going to pass out." Then he was saying that he couldn't breath very well and couldn't take a deep breath. I think we both were thinking he was having a heart attack. Or having complications with his WPW. (A heart condition that we found out he has right before brain surgery) He told me to call 911. And I couldn't help but think, After all Ammon has been through, I am now going to lose him because he stepped on a tube? Needless to say, we were very very scared. And it didn't help having 6 paramedics standing over him trying to get him to breath with blood all over him and the bed. I'm sure we scared our poor neighbors to death. They got him to the hospital and pretty soon, figured out that the tubing just needed to be replaced. So we waited in an ER room from 11:00pm to 7:30 am just so a Dr. could tell us it was ok to go home. All that scare for nothing. It was almost comical. Almost. The best news ever is that Ammon has finally started to eat again. It only took 5 1/2 months. I think in only 3 days time, we have been to about 5 different restaurants. I know most people usually try to lose weight, but if anyone is trying to gain wait, we will most likely be at any number of restaurants any day of the week. Feel free to join us. We are calling it the "Biggest Gainer" We were suprised when the Dr. called us and said they wanted him to start chemo that next morning. So Ammon went in for his fourth and final round of chemo on Sept 26, 27 and 28. His blood counts were already low enough for him to be admitted that last day. They think he will spend a couple of weeks in the hospital and then be able to go home. It was a very surreal moment for us both as we were leaving his lazy boy in the chemo place. Pictures were taken of his favorite nurse Katie and the "chemo room" where many people, who are a lot like us go to get injected with poison. I am sure it will be even more weird to leave the hospital for the last time. I hear that the recovery phase of cancer is just as confusing and difficult as any other stage in this process. We will welcome it. We just hope this last hospital stay goes smooth and without any complications. We almost don't believe that this chapter is almost over. Hopefully forever. Friday, September 21, 2007 We finally got Ammon home last Saturday. He spent a fun 29 straight days in the hospital. (With about an 18 hour break in between before he had to go back) He has felt pretty good. Just really really tired. In the hospital, they took out his port to get rid of the infection only to find that it wasn't infected. The joys. But they had to rule it out. They then put a picc line in his arm. It is kind of like an IV that is in his upper arm and has tubes that go all the way up in his veins to his heart. I know the medical people reading this must really be laughing at that description. They will administer all his meds and his last round of chemo through his pick line. He is very happy to not have to get another port. When he was in surgery, he asked the nurse if he could keep the port. She looked at him funny and said, "I don't know, let me ask." So the Doc said it was okay and now we have one more souvenir to add to the collection. His Dr. lowered his calories in his TPN (bag of food) and so he is really needing to eat. He is down to 146, 44 pounds down from when he first got cancer. So we have tried a few different things, but he still only eats Jamba Juice and a little chicken soup. Those taste buds have got to come back sometime. Right? I have taken on the role as full time nurse. He has about 10 different meds with different doses and times, so I am happy to take that off his plate. I can't do much to make him feel better so I am glad to be able to take care of him a little. We were excited that the last treatment was set for Sept. 10th becasue that meant he would be able to attend his 10 year reunion. But because of his extented stay in the hospital, he will start the last treatment a couple weeks late and will most likely still be in the hospital. The list of inconveniences from this disease just gets longer and longer. He is thrilled that he only has one treatment left. We are not sure when that will be. Maybe in another week or so. I just wanted to thank Misti Lee again for the beautiful cancer bracelets she made for me and my girls. They will be a treasure in our family forever. I almost hate to let them wear them. They belong in a shadow box on the wall for display. And thanks to everyone for the continued prayers and cards. Even from people we don't know. The support is overwhelming and it gives us that extra push to keep going. Monday, September 10, 2007 There is good news and bad news. The good news is they finally let Ammon come home after 21 whole days in the hospital. The bad news is, within hours of coming home, he got so sick, that the next day he ended up going to the ER to be readmitted and has been there since. When he was leaving, Brooklyn was grabbing his leg begging him not to go back to the hospital. Talk about a tear jerker. That was a rough day for all. We have figured out that he is going through some withdrawals from some of the meds they gave him. We were pretty frustrated with the entire medical profession. He kept being passed off to different people and no one knew what to do or why he was there. My dad (bless his heart) stayed with him for about 8 hours to make sure he got to where he needed to be and that they didn't give him any more of the medication that got him here in the first place. It's frustrating when you feel like just a number and not a human. Hopefully they will let him out tomorrow. Next round of Chemo should start in a couple of weeks. But his levels dropped quite a bit after he got out of the hospital so we have to wait for those to get back up. What a month this has been. No one should have to feel like he has to feel. It is hard to watch him go through this. Each day gets a little better for him though. What doesn't kill you, makes you stronger, he should be pretty dang strong after this! Another update - Monday, September 10, 2007 We learned later on today that Ammon's now has a fever of 102 and they have ruled out all sources of infection. So they are thinking the infection is in his port. So they will have to do surgery tomorrow morning to take out his port. (the thing in his chest where he gets food, chemo and meds) If it's not one thing it's another. Poor guy just can't seem to catch a break. So he will NOT be coming home from the hospital anytime soon like I reported earlier. Monday, September 03, 2007
Well – we were surprised when his Dr. called and told us they had Ammon scheduled for chemo the very next day on the 15th of August, almost a week earlier than we were hoping. Ammon got terribly sick 3 days before and almost decided to postpone his 3rd treatment. The day of, he decided to go and was glad because they drugged him up pretty good and he felt good enough to finish. On his 3rd and final day of treatment he got very sick. He already had a fever and low blood levels. So they admitted him right away instead of waiting. He says that throwing up doesn’t even phase him anymore. For those of you that don’t know – Ammon is the worst sick person ever. So he has come a long way and has been so strong and amazing through all of this. I rarely see him sad or depressed. He is a warrior. Lance Armstrong says that he thinks that is what helped him win all his races, he had already been through cancer which was much harder than those long uphill races. So watch out all of you that think you can take Ammon in basketball and ping pong now that his coordination is shot. He just might come back bigger and better.
So much for the 8-10 days they told us Ammon would be in the hospital. He has now been in the hospital for 18 days. He is going pretty stir crazy. I try to make it down there at least every other day. Thanks to his sister Jordan who works there and his friend Shawn who goes often, he isn’t as lonely. They both have logged in a lot of hours at the hospital. I was able to take Brooklyn down to the hospital yesterday to see him for the first time in a 2 ½ weeks. I love to watch him be a dad again. Even if it is just lying in the hospital bed watching Shrek. As of today, his white blood cell count is up to 5.5 and they are waiting for his platelets to come up. It is what helps his blood to clot. Hopefully tomorrow or Wednesday he will be home. He misses his little girls. Hayden is a completely different baby now and I can’t wait to show him all of her new “tricks”.
Ammon has officially been with out eating for 5 months now. He has had his feeding bag for just as long. He recently has been able to hold down a little Jamba Juice. Brooklyn is now one spoiled girl with her beverages. Water is no longer acceptable. When Ammon gets out of the hospital – it has been our daily routine to go get a Jamba. Coolidge has got to get one of those!!!
They have Ammon scheduled for his 4th and final round of chemo for Sept. 10. But seeing that is in 6 days and he isn’t even out of the hospital yet, I am sure that won’t be happening. But we can finally see the light. We are talking about when we will move back home and that is exciting. It will be bittersweet as we have grown even closer with family and the people in the ward and community. How will we ever repay all of you? Again, thank you so much. Love, the Lees
Sunday, August 12, 2007 I keep getting calls asking about Ammon so I thought it was time for another update. Ammon had his 2nd round of chemo July 16, 17 & 18. Then was admitted in the hospital on the 19th for 10 days. Even though his blood levels got as low as they did with the first treatment, he didn't feel near as sick. All of his meds still make him a little loopy and I'm sure you know that if you have ever called him while he's on his meds. You just may catch him talking about some random Phoenix Suns team from the 90's or he may call to talk to you not remembering he just got off the phone with you 10 min. earlier. We have had a lot of laughs. He seems to have a real hard time coming home from the hospital. He has about 4 days of bad sickness and just as he thinks he wants to go back to the hospital, his body finally seems to adjust and then the recovering starts. But aside from the normal stuff - nausea, hair loss, heartburn, not eating and a whole lot more of
stomach issues, he says that this is the best he has felt in a long time. We decided that because he was feeling so well, I would go up to St. Johns and spend the week up there while he was in the hospital. I was worried about leaving him alone but family and friends stepped up to the plate and spent a lot of time down at the hospital. Thanks to everyone that gave up time with their families to go see Ammon. He also got another MRI that looked good and showed no new growth. We were very pleased with that. The Dr's say that if it does grow back, it would most likely be in 2 to 3 years. We are hopeing never obvioulsy. We are hoping he can start his 3rd treatment on the 20th, if not probably the 27th. We are a little nervous as this treatment will be as brutal as the first. Hopefully his body will know how to deal with it better. But we can't wait until we can say we only have one more treatment left. There finally seems to be a light at the
end of the tunnel. We will be happy to say goodbye to 2007. Thanks again to everyone for all you do. We still haven't found the words to express our gratitude. We'll keep woking on that. Love, The Lees
Saturday, June 30, 2007
Well - we finally got Ammon home on Wednesday after 2 weeks in the hospital and he was feeling pretty okay. He was able to hold Hayden and visit with Brooklyn for a FEW HOURS!!! We thought that we had finally made it through the rough patch. Well- Thursday morning he woke up throwing up and hasn't stopped since. We just can't seem to get the right combination of meds for him here at home. Or maybe his body is just now reacting to the chemo. Who knows. I just feel so bad for him. I don't know why he needs to suffer so much. We agreed to the cancer - but not this. We are trying to bless Hayden tomorrow, but unless the vomiting stops - it will just have to wait another day. If he still feels this sick on Monday - he will probably beg them to put him back in the hospital. I just hate to think that he will spend the next 4 months in there. If we can just control the nausea, we would be good. I think he will start another round of chemo in a week or two. Here we go again. This too shall pass. Thanks again for all your prayers for Ammon. I believe they are keeping him with us.
Monday, June 18, 2007
I went and saw Ammon yesterday and a lot of things are improving. He is more coherent than he has been in a week. He was able to stay awake for the whole time I was there (a couple of hours) and at home he couldn't even open his eyes. The doctors still have a challenge in finding out where this infection is coming from. Could be the port in his chest, his shunt, or just something he caught. His speech still really struggles more than ever. Ever since the surgery, his speech has been slower and a little slurred, and I am wondering if the chemo and him being so week is
making it worse. The doc said that low blood pressure, lack of nutrition, dehydration, or the infection - any of those could have played a part in his being confused and delirious. Sunday, June 17, 2007
Ammon had his first round of chemo last week and hasn't taken to it too well. We took him to the hospital yesterday because his behavior was so off (not really capable of having a conversation, couldn't walk, and forgetting places, his kids names, what we talked about 10 seconds earlier. Just to name a few) and he was getting worse by the minute. We are learning that we are our own doctors and we can't count on anybody but ourselves to get some action taken. Now we know how bad things get for him after chemo. Hopefully he will pull out of this soon. Thanks for all your prayers and support. Saturday, June 16, 2007
I called Ammon's nurse today for a positive update and I didn't get what I was hoping for. The nurse informed me that Ammon has been very sick with a fever of 103. He has ulcers all in his mouth and down his throat again which they say is very painful. His white blood cell count has been so low that he caught an infection from somewhere. His red blood cell count is low also which makes him extremely lethargic and they are giving him a blood transfusion for that. Plus all the normal affects like nausea, fatigue and all of that good stuff. His fever seems to be going down a little and his white blood cell count is now at 0.2. He is on 4 different antibiotics to try to help with the infection. I'm hoping that things continue to get better. They don't tell you too much info and I don't know how serious this infection is, I just know he is in the best care and hope they pull him out of it. |
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