My husband has been a fighter since birth. He was baptized in the delivery room because he wasn't expected to make it, but 48 years later, he's still fighting the good fight. Tom has already gone through radiation and chemo treatments two different times, so he can’t have any more radiation and chemo alone won’t work on this cancer anymore. They believe it is HPV related and is the reason it keeps coming back and also due to the lack of not having much of an immune system because of the WHIM syndrome. He was supposed to have a bone marrow transplant in October of 2014, but the doctor’s decided at the last minute that it was too risky and cancelled it. I believe now that had they gone through with it, he wouldn’t be with us here today. Out of 3 siblings that were tested to see if they were matches for the bone marrow transplant, 2 came back as 100% matches, which is rare! Due to Tom’s frail health, the doctors instead decided to have him go on a study drug with the NIH (National Institute of Health in Bethesda, MD) which would be administered by a twice daily shot and taken at home (in Illinois). The study drug protocol requires visits every 3 months to Bethesda for check-ups to see how the drug is working. He’s been on the drug since January of 2015 and it is slowly working.
However, he’s developed an infection in his right jaw due to complications from radiation. He was put on steroids to help with the pain he was having, but that caused the cancer to grow at a fast rate and halted the progress of the study drug, so they had to take him off the steroids, but now has to deal with 24/7 pain. He's had to have multiple facial reconstructions and was set to have another one on June 9, 2014 but they cancelled it because of the cancer. Due to this new infection, they now have no choice but to do another facial reconstruction because the jaw bone is basically dead and causing infections. He’s scheduled to have this surgery on August 31, 2016 and it could take up to 18 hours due to the complexity of the surgery. They have to take a piece of his shin bone along with skin and muscle and transfer it to his jaw/face. The surgery will require him to be in the hospital for 10-14 days with months of recovery time at home. The surgery will take place at The University of Chicago Medical Center, which is about 2 1/2 hours from our home in Villa Grove, IL. We do have family and friends that live in the suburbs (Downers Grove), but with traffic, it can take at least an hour to get to the hospital.
I'm in awe of my husband's positive attitude through all of this but it does get to him once in a while. Through all of this and with the grace of God and the help of some very special and awesome doctors, we were able to conceive a child. We now have a beautiful 8 month old little girl, Grace Mary Ryan. She truly lights up our world and helps Tom get through his days of constant pain. However, Tom will not be able to interact very much with our VERY ACTIVE little girl during this time. It’s going to be so hard on him because his favorite thing is his morning snuggles with her. Since we also live 2 1/2 hours away from the hospital, I/we will have to make multiple long drives for this to happen. I will have to take time off from work, most of it will be unpaid due to the time I took off earlier in the year to have our baby.
First and foremost, we are asking for your prayers to help us get through this next "speed bump" of life.
The money we raise will go to help with medical expenses first and then the cost of gas, food, diapers, baby food, and household expenses. The surgery is August 31 and we need to get things ready before then.
Tom and I are truly thankful and feel so blessed by the help and generosity we have received in the past. Any help you can provide now would help take the stress off of an already stressful situation.
I will keep you updated as things progress. You can also visit us at Tom's CaringBridge site, https://www.caringbridge.org/visit/thomasryan as well as follow me on FaceBook, Staci Leon Ryan.
Thank you so much for your help!
Tom, Staci and Grace Ryan