Tom Ryan Thomas Ryan

First post: Apr 22, 2011 Latest post: Dec 11, 2016
Hi All!

Please read Tom's Story (My Story) first so you can get a better understanding of what is currently happening with Tom's medical journey.

We hope you enjoy this site as a way of receiving the most up-to-date medical information on Tom.  I found this will be the easiest way for me to do it instead of emailing everyone and posting on FB as not everyone is a FB user.

Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guestbook.  Tom would love to see notes from everyone!

As many of you know, Tom has dealt with a multitude of sickness throughout his life.  The last 12 years, he's had to deal with multiple cancers.  Tom has a rare disorder called WHIM Syndrome, which basically means he is immuno compromised and makes it difficult to produce white blood cells - almost anything can make him sick.  Two other siblings, a niece, and a nephew also have this disorder.  However, only 7 or 8 other families in world have this disorder (that's been documented).

*1999 - Tom had Non-Hodgkin's Lymphoma Stage 4 (the worst stage) which was in his face.  He fought that off with a pretty aggressive treatment of Chop Chemotherapy.  He was treated at Rush University Hospital in Chicago, IL.  Tom went into remission and was successful at beating this form of cancer.

*April 2005 - Tom was diagnosed with squamous cell carcinoma (skin cancer) in his left maxillary sinus cavity.  He was living in Arizona at the time and received radiation treatment at the Mayo Clinic.  They were able to get rid of the cancer with surgery and the radiation, but unfortunately, the radiation took a toll on Tom's face.  It also caused him to lose a lot of weight, dropping to 95 lbs.

*Dec 2006 - Tom's face was doing what the doctor's call skin necrosis.  His skin's blood supply was not robust enough and portions of it were breaking down.  The doctor's did a skin/tissue transplant from his leg to his face to get healthy tissue to replace the dead tissue.

*April/May 2007 - Tom had all of his teeth removed due to his gums deteriorating from the radiation he received in 2005.  

*Nov 2007 - We moved back to Illinois from Arizona

*Sept 2008 - No longer in remission.  The squamous cell carcinoma returned in the area of his left lower jaw.  He had surgery at Rush University Hospital in Chicago, IL.  However, they weren't confident in what course of treatment to give him, so they referred us to The University of Chicago Medical Center.  We believe that was the best thing they could have ever done.  At Rush, we had older doctor's that thought Tom was too complicated of a case, but at U of C, we were introduced to young doctor's who were intrigued by the complexity and were eager to work with him.

*Nov 2008 - Tom started a treatment of Chemo and Radiation.  He would stay for a week in the hospital then come home for a week.  His last treatment was Jan. 2, 2009 so we watched the fireworks at Navy Pier from his hospital room! :)  Tom stayed in remission till January of 2011.

*Due to having two rounds of radition (back in 2005 and 2008), it has taken an even bigger toll on him health wise.  He no longer has any saliva glands which means he can't really eat anything, so he drinks his nutrition (like Ensure).  For about 2 years, he had a feeding tube in his stomach, but that got infected and was removed in September of 2010.  At which point he started drinking his nutrition.

*Some of the other health issues have been major bleeding issues.  In March of 2009, Tom's left carotid artery blew.  It started as a small leak we thought would stop.  After bleeding all night we took him to the ER at Good Sam in Downers Grove (where we currently live) and it stopped bleeding.  Then we headed to U of C and was told had he bled much longer, it would've killed him.  They had to coil off his artery and that created the right carotid to take over the blood flow.  It's amazing how the body will take care of itself when it needs too!

*He had other trips to the hospital ER for smaller bleeding issues they were able to stop.  One of the trips caused him to get C-Diff (bacteria infection of the bowels) which made him lose a lot of weight (and he's small to begin with) and was in constant pain because we didn't know what it was.  Finally after getting it diagnosed, the doctors were able to control it immediately.

*Jan 2011 - At the end of January, he had a small tumor in the lower chin and his doctor was able to remove it surgically.  No radiation or chemo required for this tumor.

*April 2011 - During the last two weeks of tax season (Tom is an enrolled agent, tax accountant and has his own tax business) Tom was in constant pain from headaches and had no energy.  He pretty much admitted himself to the hospital and brought the office to the hospital so he could finish his clients' tax returns.  They said he had multiple infections and started with a round of antibiotics.

*They thought it was helping and sent him home.  His face and neck were red and his skin on the left side is starting to necrosis again which is very worrisome.  I'm running out of room here, so I will continue into the journal section.

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