Resting after surgery

Surgery went well today they dilated my throat, i could not believe how narrow it was! I am quite uncomfortable but am on lots of pain meds. I will have to have it dilated again in about 2 weeks and depending on how it responds it might need to be done again. They took some tissue to do a biopsy. I also found out that my gall bladder will be removed in about a week or two, they found 3 stones and the pain and high enzyme levels was cased because i was passing a stone. I am in quite a lot of pain and nervous for the blood results to come back about the Fanconi Anemia, it should take about two weeks right around the time the biopsy results are back. I have had lots of visitors my Mom and Dad, Deborah, Amber, Melanie and Cherise and of course i would love more visitors! Enjoy the pictures! All my love

Surgery tomorrow

Tomorrow i will go into surgery to have the stricture in my throat dilated at and they will also remove tissue and due a biopsy. I had some blood drawn today for a test. They are testing to see if i have something called Fanconi Anemia, i googled it and then i had to stop reading about it because i just started to cry. I am hoping its very unlikely that i have it but i guess they want to test anyway. I will be in the hospital for quite a while, they are also discussing removing my gall bladder as well. Lots going on, i go into surgery at noon tomorrow wish me luck. all my love

Mary

Esophageal stricture and pancreatitis

Yesterday day i had my long awaited swallow study done at Seattle Children's. They found quite a large stricture in my throat and part of my throat is very narrow. Afterward i did not feel good, i started to have stabbing pains, Tim's sister Deborah was with me and while i waited in the bathroom because i couldn't move she found a nurse to come help. When she returned to the bathroom i was passed out on the floor, i woke up in the ER with chest pain and well just lots of pain. They did a CT scan to rule out a blood clot in my lungs, and when my blood work came back it turned out i have pancreatitis. I am not allowed to eat or drink. Yesterday they inserted a picc line from my arm to one of the major veins in my neck, i was on some good drugs so the pain wasn't as bad as seeing all of the blood. I will have a couple procedures where i will go under anesthesia and have that area of my throat dilated and possible surgery if needed. I will need a feeding tube put back in because recovering from the procedure can be painful. As far as my pancreas goes, we are waiting for some more scans to see if i have a stone or any other reason for the recurrent pancreatitis. Due to how narrow my part of my throat is my Drs are surprised that i can even swallow clear fluids. Hopefully this can be fixed and my pancreatitis goes back to normal. I would love nothing more than to be able to eat!I will be in the hospital for a while, lots of tests to do, and i can't wait to start getting my throat healed. All my love

Mary

Thank you!

I just wanted to take the time to say thank you to everyone who made our wedding day so special! To have all of our family and friends at our wedding was amazing. We had the BEST day, we only we wish we could have slowed it down or pressed pause. So many people that we wish we could have talked to longer or had more time. Thank you, we feel so lucky to be surrounded with such loving family and friends we could have not asked for more!

With all the wedding stuff and excitement i almost forgot what time of year it was. It was July 23rd 2009 when i went to Harborview ER after months of pain and wondering and found out the news i will never forget. A hypopharyngeal mass in my throat that appeared to be cancer. On August 3rd what we had been waiting for...the results of my biopsy and a diagnosis of embryonal rhabdomyosarcoma. Time almost seemed to stop, in that moment i couldn't breathe and all of my fears all at once became reality. It has been an amazing year, but it wasn't me...it was all of you that brought me so much closer to life, love and everything in between. I am so grateful for life, family, and my husband (finally) and friends that showed me that sometimes the worst of times can really be the best of times! All my love, THANK YOU!

Mary

Bridesmaid lunch

Birthday week

This week is what Tim and i call birthday week. Tim's Dad's birthday is the 14th mine is the 15th Tim's birthday is the 16th my Grandma Ann's is the 17th and Lilly's birthday is the 18th. Then a hundred more birthdays in July that we cannot keep track of, but enjoy it just the same. We will now have a wedding anniversary in July as well..i guess i will just get one really huge present each year..right?? I have a Dr's appointment on my birthday, not really how i imagined it, i guess it just wouldn't be the same if i didn't spend part of my day at Children's hospital i guess i couldn't ask for a better present than knowing i am getting better every single day. We don't have anything big planned, just to hang out watch a movie and relax. When i think of the past year and all that has changed..and all that hasn't, its been hard, challenging, motivating, tiring but i wouldn't change a thing! Ready for 25 and the years ahead! Nothing is really better than just spending our birthdays together! I just decided to post old pictures of years past of Tim and I, enjoy. All my love

Mary

Home!

I was released from the hospital Thursday and am so glad to be home! I still can't believe that this is still a problem but grateful to at least know what is going on. It all makes so much sense, not being able to gain weight and the abdominal pain although i am still surprised. I am a little frustrated to find out that no one called to tell me that the test result was positive especially when i have had so many problems with this, this why i stopped treatment early..this is why i was in the ICU twice. I guess someone wrote in the medical notes that i was getting married soon, i was so confused why every doctor and nurse that walked into my room would ask me about it. By the end i was just ready to scream i could not talk about the wedding one more time, or hear the response "how fun" or "when is the date" it was driving me crazy! I think they thought i was just not excited or something, and i got weird looks when i would just roll my eyes and respond so unenthusiastically and Tim would just laugh. Its funny people think Tim is my Dad sometimes...a little weird but ok, a couple weeks ago he had to get a new badge for Children's and he showed it to me and they changed his title from "caregiver" to "parent"...great! I am just glad to be home and am just hoping that this medication works very soon! All my love
Mary