This story was written by Alyson... The normal text is her original updates and messages, the ones in blue italics are comments added by Luis, her fiancé.

Also this will be done in chapters. This is such a long story to tell it's only fitting to work on it to get it 100% correct.

Thank you.

My name is Alyson Degnan, a 20 year old osteo-sarcoma patient. I live in Tampa Florida and I have been treated at Moffitt Cancer Center for most of my treatment. In December 2002, I was in college, and working a part time job when I was walking and suddenly my femur snapped. After being sent to three different hospitals, I learned that I had a pathologic fracture, and the tumor was an aggressive form of childhood bone cancer. I was placed in a brace from my toes to my hip, and underwent aggressive chemotherapy as well.

The chemo was one of the hardest things I had to deal with throughout the whole ordeal, because it made me so sick and caused lesions from the roof of my mouth all the way into my GI tract. This made it very difficult to eat, and I was fed intravenously for about 2 weeks. I later learned that I was allergic to the chemo when I ended up in ICU because my blood pressure was dangerously high. I was put on a milder form of chemo that still gave me sores, but didn’t make me as sick.

I was placed at a children’s hospital and during that time the back of my thigh was in pain and I was told it was a heat rash, but later, when my leg was removed from the brace, there was a severe aspergillis fungal infection on my thigh and calf. This is basically a flesh-eating infection, and it ate about ¼ to ½ an inch into my flesh. This eventually delayed future chemo treatments and a limb-salvaging surgery to save my leg. The infection left a gaping wound that had to have the dressing changed 1-3 times daily (while my leg was still broken), and lasted for 8 months.
After 6 months, my limb-salvage surgery was finally scheduled, which is basically a knee and femur replacement where the contaminated bone and muscle was to be removed. A week before, my gall bladder was found to have stones in it, and had to be removed immediately. It was taken out, and two weeks later, the BIG surgery day arrived. An extra muscle had to be taken out, 3 out of the 4 quadriceps muscles were removed. The 8 hour surgery was slightly more complicated than my doctors thought but all in all it went well

My doctor told me I needed more chemo, but only two more rounds. By the time my last chemo came around, I was up and walking again. However, a few weeks later, my doctor told me I needed more chemo again. I had my last session and was excited about the fact that it was over… or so I thought. ..... Dramatic music.........
A few weeks after the last chemo, I fell and broke the lower part of my leg (Fibula and ankle) in 3 places. I was again in a cast up to my thigh. A few months after that, the cast was off and I discovered a lump in the previous tumor site. I thought, "oh my god, not again!" I was pretty sure that I knew that my arch enemy cancer, was back for another round but I didn’t want to believe it. Me and my boyfriend thought... Hey I have bone cancer right... and there is no bone there, only metal so it can't be cancer... I went to see my doctor, Dr. Cutey just kidding Dr. Letson and he did an exam on me and was surprised to learn that I had a local reoccurrence. Since he never had one in his 14 years of being a surgeon it worried him. I was immediately scheduled for a biopsy, it confirmed that the cancer was back, and my leg had to be amputated. My doctor told me that I was a candidate for a tibia turnplasty. This is a weird surgery, so I won’t explain it, but the pic of it is here: http://www.pbase.com/image/26133408. Basically they would have had to cut so much bone that there probably would not have been enough for a traditional above the knee prosthetic leg. So what they did was use my tib-fib and attached foot and attached to what was left of the femur and now my backwards leg acts as my knee... weird huh! That is what I thought.

Then I met one of my new Clopinel aka James! He is great guy and really helped me understand how life was going to be living backwards.... hehehe just kidding he had the surgery done 14 years ago at the age of 12. Clopinel was one of the very few people that had the surgery done in the early 90's . I was one of only 3 other people that clopinel has ever met with the surgery, but the only girl. My Other friend Dan was the other one, he had a similar cancer and the same type of surgery. Dan was actually the first person I met with the backwards leg syndrome (as I call it)

Clopinel showed me that having this surgery doesn’t stop you from anything. A perfect example of this was the rumors I heard about him. I was told that he is an amputee mountain climber.. I was like yeah right! No way! But it was true he had to have many replacement legs because of his abuse!

The surgery was to be another tricky procedure so just to make sure the tumor wasn't growing anymore, I had to have more chemo. Going into the surgery it wasn't guaranteed that I would even be able to get the surgery. They had to actually go in and evaluate the leg, blood vessels and nerves to make sure they were not contaminated with the cancer. If the cancer spread too much I would have to loose the entire leg. When I woke up from the surgery the first thing I wanted to do was make sure they were able to perform the turnplasty the leg, and to much of my relief they were! I was relieved but worried, Dr. Letson explained to me and my family that the first 48hr were very important and I would have to be in ICU. The blood vessels and nerves had to be healed correctly and blood clots had to be kept under control. Luckily for me all went well.

The way my leg looks was so awkward and it felt backward and I had to get used to the way it needs to be moved. A couple of months after that, a lesion was found on my left lung. It was mostly a dead tumor, but it had to be removed. That surgery went smoothly, and now I’ve gotten my prosthetic leg, and am learning how to use it. Everyone’s thoughts and prayers are appreciated.

If anyone would like to contribute or volunteer to the prevention and research of cancer, donations can be made to the Sarcoma Foundation at Moffitt Cancer Center at (813)972-4673.

Well that’s where Alyson Left off...  And I thought of ways to continue on with this article as close to what Al left us and I really couldn’t think of anything cool so I’m just going to do it this way. I am going to post the web updates that she wrote and kind of comment on them... here goes!

** UPDATE*** Well the doctors found more cancer in my leg so they are now trying to figure out a game plan as to what is going to happen next. Since the traditional chemo for this cancer isn’t working there is an experimental procedure at the Mayo Clinic in Minnesota that I may have to try. Keep checking back on the site for more updates, my boyfriend will be updating it if I cannot... Ps. Thanks for all the Emails and prayers

        What Alyson meant by “traditional” chemo not working is that she was allergic to it. Supposedly this type of Cancer responds pretty well to the chemo and usually does the trick but with Alyson having the bone break and her being allergic to the chemo made it hard.

*** UPDATE 6-9-04 ***
Well today we just received very BAD news... After receiving one round of chemo and being re-diagnosed for the 4th time her leg got really swollen.

Alyson complained of lots of pain and swelling in her backwards leg, and the next Wednesday 1 week after the chemo she went back to the hospital to see what was going on. Doctors quickly admitted her and performed many tests to see what was creating the swelling..... They found what they didn't want to find..... The tumor grew 5x as big in 1 week! Dr. Letson as well as the rest of her surgical and oncology team made the decision to amputate. They must remove the entire femur to save her life. As you can imagine she is almost more upset now than after being diagnosed with cancer the first time, but she knows that it must be done in order to save her life.

The Surgery is scheduled for 8am at The Moffitt Cancer Center in Tampa.
So please put her in your prayers and hope for the best!
P.S.
If you email her I will take all her emails to her hospital room and she will respond to all emails as soon as she is able to. As soon as I can get enough money I plan to buy her a laptop so she can respond to emails and write to other cancer patients in her room during her long stay.

        I remember this day, it really sucked. I remember us having soo much hope for her. And things started to get back to normal for us.. She had just started walking with her prosthesis and we where all happy for her. The thing I missed most was walking with her and holding her hand... Up until she got her prosthesis she was either on crutches or wheelchair so holding hands like we used to wasn’t possible. I remember walking together with her to IHOP one of our favorite breakfast spots! It was only like 20 feet and it took like 5 minutes! But it was great to walk with her and hold her hand. So as you can imagine it REALLY sucked for all of us when they had to amputate her leg. But then again it was kind of a life and death situation as the tumors where spreading very fast. I remember lying in bed with Al the night before the surgery... we talked about how everything happens for a reason... she said “at least we tried to save my leg” and we did! We did a bunch of surgeries to that leg and hung on to it as long as possible, but it was time to part ways with it and move on to the next chapter.

**UPDATE 6-12-04 **
The surgery went well. But they had to remove more than they wanted too. Doctors removed whatever was left of my femur and my lymph nodes. As of now she is very "loopy" on pain medications but feels "relieved" that the cancer is out of her body..... For now at least. Since the chemo isn’t killing the cancer a new drug called the Sarcoma inhibitor is going to be used. It will be used as soon as she recovers from the surgery. The Inhibitor hasn’t been tested on humans yet but in the laboratory it killed all the sarcoma tumors... Will this be the drug that cures Alyson?? Tune in next time same bat time..... same bat channel...
Luis-

        The “Sarc” inhibitor was something we where waiting for and hoped for it to be approved for human testing so we were really looking forward to that.

** UPDATE 6-19-04 **
I’m home now and my littler leg hurts very bad. Please pray that I'm healed and cancer free. My surgeon is really good so it doesn't look bad, just gone... I’ll update more later.
P.S SPECIAL Thanks to Bill's Prescriptions (Brandon Brace) In Brandon They are great people, and are one of the few area businesses that actually care about their customers. The owners heard about me, and saw my website and contacted me to ask if I needed anything. They gave me an AWESOME wheelchair that is very light weight and it even matches my cell phone! They are also helping me with my mountains of prescriptions. Thanks!!
peace
love,
big al

        Yeah, Bill’s Prescriptions where VERY kind to Alyson, they helped us out a lot very good CARING people that work there. Keep up the great work guys!

** UPDATE 6-26-04 ** I GOT A PUPPY!!! I got my little Chihuahua puppy and he is the cutest puppy in the whole wide world!! His name is Pepe.
I have an appointment on Monday so pray for me!
Love Big Al!

        Wow, I really am glad we got Pepe! He really helped Al A LOT!

Man.. It was like our little son! He was such a cute puppy and brought Alyson sooooo... much joy. Here is the story on how we got him... At the time already had two dogs at home, Elmo (rat terrier) and Casey (cocker spaniel) but Casey was old and Elmo... was a pain in the butt! I only had one dog, his name was Lucky (Yorkie) I named him lucky because someone gave him to me as a puppy that was malnourished and sick, so I took him and brought him back to health and gave him to Al for our anniversary... he was cute but I don’t think he liked him as much as I hoped! But we kept him at my house and my mom got attached, so anyways this is about Pepe!

        Well we both wanted a new dog, and I was set on getting a bulldog, because one day b4 cancer me and Al saw this cute little bulldog puppy and she always said she wanted one. So we searched the papers for a bulldog pup, we found one for $1300!! That was the cheapest we could find. So we drove like an hour to see the pup. We get to this rural place and meet with the people. The puppy was so cute she really liked him. Then the breeder said “do you wanna see the parents”  WHOA! Big Mistake! Out came these two UGLY, HUGE FIESTY bulldogs! We both looked at each other like… HELL NO!  So we left and told them that these dogs were gonna grow up to be too big for her to handle.

After we left we were like damn… I’m glad we didn’t get that!

            So the Next day we go to a puppy shop and look at all the puppies there. None really excited us and we headed towards the door to leave. Well on our way out we saw this tiny little brown thing, all curled up sleeping. I remember poking it to get it to move. When he unrolled his head and looked up at us with those huge ears of his Alyson lit up!

She was like “let’s play with him!” so we went to one of the play pens and …played with him!  He was a cutey, and pretty calm so Alyson was like, let’s get him… What Alyson wants... she gets! So we dished out over $1000 for Pepe and took him home. She was so happy to have him and I could tell that he was gonna be a great investment for her. Now Alyson already had two dogs in the house and there was a strict “no more animal” policy in her house so convincing Charlene and Bruce was gonna be tricky! Well Charlene liked him right away... who wouldn’t! He was so damn cute. And Bruce didn’t like him but Pepe’s cuteness won him over.

            Pepe then traveled with us wherever we went, he was a “therapy” dog and no one would say no to a one legged cancer patient!... Well at least that was Alyson’s philosophy. He is very well behaved and wouldn’t squirm or made noise, plus he was so small Alyson could keep him in her purse! Pepe was well traveled he went with Alyson to her doctors appointments and even hung out with the MRI techs while she was getting her scans!  Everyone liked Pepe! When my grandmother died in July Alyson brought Pepe to the funeral... and at first we left him in the car... (Running with AC of course) but when people found out about him they told Al to bring him in. Pepe consoled the family that was mourning my grandmother and it was really cool that he could put a smile on their faces!

        Pepe wad also doing his “duty” at Alyson’s memorial service where he again consoled grieving family members.  Now that Alyson is gone Pepe shares his time with Charlene and me, He is actually sleeping on my lap as I type this! It’s really weird with him... and you are probably gonna think I'm a freak for saying this but I really think he has a piece of Alyson in him... ask anyone who spends time with him and they will say the same. He’ll actually stare at you as if he wants to tell you something... it’s crazy. I just look at him as the last living piece of Alyson I have left... kind of like our son… but not really!

**UPDATE**8-2-04** well... I have like 3 tumors in my lungs now and I'm on this experimental chemo. ICK!!! Anyway, all my hair is gone again and I’m sad b/c it was 2 inches long! Double ICK! I’m still hot though! :) I have it again on wed. and I’m not looking forward to it but I'll be home the same day, so it’s not too bad. I NEED JESUS!!!!PRAY FOR ME!!

        They put her on this experimental lung cancer drug... that didn’t work...

**UPDATE**8-11-04** I have chemo tomorrow so wish me luck. I had a few problems since the last treatment but now I'm ready to go again... Not looking forward to it though! For all of you who have been emailing me and praying for me Thanks from the bottom of my heart. All those prayers and messages keep me going.
Alyson.

**UPDATE**8-13-04**I had chemo today and I slept through most of it. Now I'm home and hopefully everything will go smoothly. I a bit woozy and my hands are numb, but that’s all.

***9-10-04**** well, I've been a little sick to my tummy for about two months, and now I know that my G.I. tract has an infection. Yuck! now I'm on some new meds that
will hopefully take care of it. I’m also getting excited b/c I went to my appointment to talk to my prosthetic guy about getting a new leg. I hope that it won’t be too uncomfortable and it won’t hurt too much. It’s going to have to come up around part of my pelvis and torso. that’s not going to be fun. It could ALWAYS be worse. For now my tumors in my lungs are stable, but not going away either. My boyfriend and my dog keep my spirits up and I thank every single person who
looks at this site and takes the time to realize what
is truly important in life.

        Good point Al, What is important in life?? One of Alyson’s mottos was, “it can always be worse” that is what kept her going. What we always felt was important is that no matter what, we stood together as a family and cherished every moment of each others lives. Because “shit happens” I know I should watch my language but it’s true… things do happen and a lot of times bad things happen to good people. But being the person that Alyson was she always could find a reason to be happy. One day she told me that she was thinking about why she got cancer and not Sadaam Hussein, she said “If bad people had bad things happen to them then no one would care, but if nice people like her got sick it would inspire people to work harder to find a cure!  During this time Alyson was sick to her stomach on and off not knowing that tumors where entering her GI tract and causing her condition to get worse. She never got fitted for the leg she was talking about.

**9-25-04**
Well for those loyal "fans" out there we continue to thank you for all of your support and prayers. But I think Alyson needs a little extra help. Alyson had to have her surgery to remove a grapefruit size tumor in the soft tissue around her pelvis 2 weeks early. The tumor gave her a lot of pain, so much that she couldn’t walk. The size of the tumor affected her bladder and was difficult to remove. The 6 hour surgery is expected to take a longer healing time and the next few days are critical. During the surgery Alyson lost a lot of blood, so she received transplants and will be getting IV fluids to help her body catch up.

Alyson will also be kept sedated and on a ventilator for a couple of days to help her body recover. I haven’t talked to Alyson yet since she is still sedated but when I do I will update more.

Thanks and keep praying!
Luis

        This was a scary surgery and supposedly out of all her surgeries this was the most dangerous one. And probably could have been the one that could of taken her life. I was SUPER scared and cried so much (privately of course!) because I thought this was gonna be farewell. I didn’t let her know how much I was worried, because she wasn’t really worried about the surgery; she was more worried about the doctors not being able to stop the spread of cancer through her body.

  I remember all of us... and Alyson didn’t have a large family it consisted about 12 of us at the most and that was her entire family! Excluding her biological father that was in Rhode Island. We waited and waited to hear something from the O.R. I was scared to death, and every phone call that came into the waiting room I freaked! Eventually the surgeons came out and said she was fine. But it was a really tricky surgery and they couldn’t remove all of the cancer. She bled a lot and her body need time to recover so they were gonna keep her sedated for 2 days to let her body recover. I wanted to see her so bad I was scared, Charlene got in b4 me and said she was fine, then I snuck in and got to hold her hand and tell her I loved her, I gave her a kiss on the cheek and snuck back out of the ICU!  Well what we didn’t know at the time was Alyson was awake! And could hear and see everything but couldn’t move or respond! She described it as one of the scariest things that she has went through. She woke up but couldn’t move and really couldn’t remember what happened. She was in a bed with tubes down her throat and mouth. She said they hurt her and she was really thirsty. But they thought she was sedated. She said she was so scared and all she did was pray and hope she could make it to Christmas.

**9-28-04**
Well Alyson is out of the ICU and has been transferred to a regular room. She is doing very well, she is known for a fast recovery after major surgeries. I have posted two new photos of her.
Luis

        Alyson is Awesome! She kicked butt and recovered WAY faster than anyone thought. I took pics of her in ICU smiling! That’s my baby!

        It was her 21^st birthday and she was bummed out but she really didn’t have a choice... it was a serious surgery! An Alyson surgery tradition was to write a message on a body part of hers that was going to be operated on” so surgeons can laugh and be in a good mood when they cut her up” This message said that she wanted a drink when she recovered!  A member of the hospital staff put a bottle of wine in her room as well as lots of other cards and gifts for her when she returned from ICU... but the secret wine person never said who he or she was!!

---More To Come---