Saturday, December 20, 2014

'Tis the Season!

There has been an incredible outpouring of support for our family in the past few weeks. The financial help is wonderful, but the support involves much more than just money. We appreciate each and every gesture:  thoughts, prayers, cards, phone calls, visits, and gifts. Our talented and generous friends spent countless hours organizing and orchestrating fundraising events for us--thank you to all who participated in any part of them. 

On Thanksgiving weekend, some dear musical friends teamed up with LaSalle Market in Canton, CT and sponsored an evening of live music with donations to benefit our fundraiser. Friends, family, and even Santa himself contributed to the evening which raised more than $700.

Transplant:  an art bizarre + fundraiser, the pop-up event organized at ArtSpace on December 14, was a huge success. We loved seeing so many friends and family--that big space was filled to the brim with LOVE. Contributions to the John Toomey Kidney Fund from the event totaled $11,000!  

Wonderful colleagues at my job surprised me this week with some holiday cash. Our little family is feeling the love!

Monday, December 8, 2014

December update

Still no update on the Hepatitis C treatment, we are appealing to the insurance company currently and hope to find out in the next week or so.  We will find treatment somehow--it is urgent that we clear this virus soon before more damage occurs to the liver.

John had his monthly neuphrology appointment today.  His 'numbers' look ok--that is the bloodwork we do monthly to be sure his nutrition and treatments are as supportive as possible to his body's current state.  He can use some tweaking on the nutrition front, and he continues to work on this. Getting 84g of protein a day is challenging, even if you like steak.

Last week John had a chunk of skin cancer removed from his hand.  He has squamous cell carcinoma, a type of skin cancer that can have many causes including taking immunosuppressants.  He has been taking medicines to suppress his immune system for 30+ years, so when the diagnosis came we were not surprised.  Hate to add to his list of diseases, but believe it or not--this cancer is not at the top of our list of worries.  He sees a dermatologist every three months for an exam and biopsies.  She typically 'burns' spots off as well.  When the results come back as cancerous, John sees a surgeon to have it removed.  He has had a mohs procedure on some spots, and other cancers were just cut out.  The surgery last week left him with a 3 inch incision and many stitches on his right hand and wrist.  Next month he has surgery on his left hand.  John strongly suggests that should you ever find yourself in a position to watch the skin cancer surgery...don't do it. And he has a pretty high tolerance for this stuff.  The hand procedures present a bit of a challenge in that he needs to insert the needles into his fistula for dialysis and full use of his hands is critical. 

John is back to work, which is great for many reasons...not the least of which the fact that he likes his job.  After being so sick and immobile for several months this fall, the tendons and ligaments in his foot and ankle are inflamed, making walking difficult.  The tendonitis requires physical therapy and a topical medication.

Some fantastic friends have organized a pop-up art show and fundraiser for this Sunday, December 14 from 12-4pm at ArtSpace in Hartford.  Here is the link to an article that the Hartford Courant published over the weekend.  We'd love to see you there!

ArtSpace to Host Fundraiser

The outpouring of support for our family during this difficult time has been wonderful.  Thanks for keeping up with us here on the blog, and for the dozens of other ways you support us.