Friday, February 9, 2018

Beyond Cancer - Hemophagocytic Lymphohistiocytosis HLH

Me, Demara and Grandpa McCann at Easter, @ 1980.
Cancer is devastating. Once a diagnosis is made, it changes your life forever. I can't imagine the feeling of being diagnosed. I know too many people who live with cancer (including mom) and too many people who have lost their lives to cancer.

So - what could be worse than a cancer diagnosis? Enter into the equation a disease that takes months to diagnose, is rare and can severely debilitate a person in less than 6 months. That has been the story of my cousin Demara. Demara is my mom's sister Ruth's (Sharon to some) daughter who was eventually diagnosed - after many months - with HLH... Hemophagocytic Lymphohistiocytosis... a life threatening immunodeficiency. It started out with fever and fatigue. The symptoms not pinpointed to anything specific until it got way out of hand.  A simple overview here >>

Basically, Demara's body betrayed her and turned into her worst enemy. And even though it is not cancer, she has received rounds of chemotherapy to combat what her body is doing and slow the disease. The only hope Demara has is through a stem-cell transplant. The good news is she has found a match and now has a date to start the treatment - March 5. Demara and her family have moved to Boston for the next several months in order for her to have the transplant.

We take so much for granted - walking, eating, running...going to the bathroom by yourself! I am thankful every day for my healthy body. Demara has been blogging about her experience (as we know blogs are a great way to keep family and friends updated) at Glittered Path. I am amazed at what she has been through - surgery (remove spleen), chemo, infections and sickness, hip surgery (effects of HLH and steroids have eaten away the joint, very painful) and more chemo. Her attitude is amazing.

If you can help Demara, she has a GoFundMe set up to cover expenses while she and her family are in Boston for her stem-cell transplant. In my mind it is simple - give up a few dollars and go without something for a month...not only because Demara needs this, but because you can. I want to go without a new pair of running shoes or whatever-is-on-sale on because I can. Demara can't go without a stem-cell transplant, and Demara's family can't go without her.

Wednesday, January 10, 2018

Dr.'s Visit - Steady as She Goes

Mom had her 6 month follow up with Dr. Porubcin this morning and all is good and steady! There are still no outward signs or symptoms that her ovarian cancer is active and or growing elsewhere!

All of mom's blood counts/numbers are good AND her CA125 is still hovering in the 4's. Hallelujah! That low number made Dr. P. very happy and he considers mom an amazing case of Ovarian Cancer remission.

Mom also had her osteoporosis test results and thankfully that has not progressed any further as well - it is still at a negative 3 [something]... but no worse that the previous osteoporosis test done the year before. The chemo does take a toll on the bones, but Dr. Porubcin is happy that osteoporosis has not progressed and credits mom with her walking regimen. In the winter months mom gets her walking done throughout the halls at Hammond Henry Hospital. She does at least a mile or more and that is impressive to me. She can hold her own on a walk.

After Dr. Porubcin said how amazing mom is doing, then he said that he was concerned that he hadn't heard mom cough during the visit. As Dr. Porubcin has gotten to know mom over the years, he has gotten to know her cough (as we all have) and is now worried that she is not coughing as much. Are doctors ever satisfied?

Mom's next check up is scheduled for 6 months - the fact that she is scheduled that far out is a good sign that no one is worried about her cancer growing anytime soon. Cheers!

Mom and Uncle Steve walking in Peoria Race for the Cure 2017

Monday, December 25, 2017

Holiday Blessings

First United Methodist Choir, Geneseo.
It has been a great holiday! I went to Church on Christmas Eve morning to see mom sing in the choir (she is first row third from right; in between the Kisers) and then she came over to our house for our usual afternoon supper and then opened gifts.

If 2017 could be known for something, it was quilts. Mom made each boy a Christmas quilt and then made a quilt for each girlfriend! AND she made Tom and I a quilt for our 20 year anniversary in October. She also made a quilt for my nephew Ben and his new wife on their wedding day last September. I'm sure she made more and I don't know who all she made one for this year.

The most amazing thing about 2017 was that mom made it through the year without any chemo! Her CA125 count has been hovering around an average of 4 this entire year, and that alone is amazing.

These are the times when we are thankful for the simple things.... like just getting up in the morning and staying healthy. Mom is feeling good and not having any other symptoms. Her arthritis is bothering her (typical this time of year) and her winter cough has reared up.

We are blessed!

Christmas morning!

Wednesday, October 11, 2017

Chicago Marathon

The Chicago Marathon last Sunday was a success! I completed the 26.2 mile course in 4 hours and 38 minutes. It was a rather hot day for October, but I was able to make it through just fine.

Unfortunately, I didn't hit my goal of $1,000 for the American Cancer Society - but I came close. Overall, our Team DetermiNation has raised $200,000 for the ACS since they formed, and to me that is a pretty big deal! The amount of time and dedication people have put into the venture is very commendable, and I am a firm believer that we can accomplish a lot and speak volumes when we pool our money and resources together.

And I am thankful that I have a lot of friends and family who supported me on this venture. The training was a lot of work, but I was prepared and confident to go the distance.

I feel blessed that I can run and that I am healthy. I am thankful that mom's oncologist report last week showed that her CA125 count WENT DOWN even more and is now at 4 - ! That is truly a blessing! I want to always remember to be thankful and not take health for granted, because in turn we have to be strong for those who are struggling.

Cancer is tough, and I admire each and every person who has to have a battle with cancer, and that's what I kept thinking as I was running the Chicago Marathon on Sunday - if my mom and cousin Heather and cousin Demara (and many friends) can go through chemo, then I can run 26.2 miles.

Andrea, Kristin and myself.

Monday, September 25, 2017

The Big 7-9!

Mom celebrated her 79th birthday this month! We went out to celebrate last Friday - a little late as her actual bday is on Sept. 15 - and had a nice dinner with dessert. The week before she had several lunch and dinner engagements so I did not worry about her not having people to celebrate with! She has many friends and I feel thankful for that.

This has been a good year overall and the chemo break has been good for her. She feels look and looks good and her hair has grown in very nice - again!

We aren't sure what the next round of chemo will bring - her counts have been good and Dr. Porubcin is very happy with her health right now.

I asked mom what she wanted to do next year for the BIG 80 and she just let out a sigh and said that all she is thankful for is each and every day... because she did not expect to make it this far. It has been 8 years since her diagnosis of Stage 3 Ovarian Cancer in March of 2009, and she has been thankful for all of those days and is looking forward to more!

(Part of) The McCann clan at a summer lunch gathering in Ottawa, Summer '17

Thursday, July 6, 2017

And for my next trick...

East Moline Firecracker 10K
I love running and I especially love running for causes (as you can see by the Race for the Cure and the #TeamTeal National Ovarian Cancer Coalition) - so this year I have signed up for the Chicago Marathon (Oct. 8) and am running with a team for the American Cancer Society.

Did I mention it is a MARATHON?

This is the first time I will tackle a marathon. - so the challenge is twofold: raise $1,000 for the American Cancer Society and run 26.2 miles through beautiful Chicago. For me it is a win-win!

My strategy is simple - I know I KNOW 100 people - and if I can get those 100 people to give me $10 apiece that will add up to $1,000. For those of you who would like to help me out with this cause, go to my American Cancer Society page to donate >> 

Mom's experience with our local American Cancer Society was a good one, which helps me feel confident that I'm doing this for a good cause. The ACS has a lot of support offerings and a good connection with the Unity Point Trinity Cancer Center (where mom receives her chemo treatments), and they are always coming in with some really cute hats and wigs. I see a lot of other cancer patients taking advantage of those FREE things and it's amazing to me that something as simple as a cute hat can put a smile on someones face and make the feel good when they are getting their chemo treatment. The cancer patients are the real winners.

Friday, May 19, 2017

Peoria Race for the Cure 2017

Mom and I went to Peoria last Saturday for the Komen Race for the Cure to walk with cousin Laurie (breast cancer survivor) along with other friends and family members. It was a beautiful morning! I wore my #SlaySquad shirt in honor of Lindsay and the rest of the Slay Squad team as we will be doing the QC Race for the Cure in June.

If you want to throw a little cash toward the #SlaySquad Team please do so! My friend Diane (Lindsay's mom) wants to raise $5K this year! Go to my page >>

Its been three years since Laurie was diagnosed and treated for breast cancer. Her prognosis/outlook is good - but she still worries. The fear is still with her. She still talks about that first month when she found her lump and going through pre-diagnosis. The uncertainty and the disbelief that it could really be happening to her.

Mom is doing really well - as you can see from the photo below she has grown a lot of her hair back and is not wearing a wig! She looks great and feels great (aside from general aches and pains etc). She still sees Dr. Porubcin and checks in every few weeks for a port flush and blood work.

Hopefully we will get through 2017 without even thinking about chemo treatments. That would be quite a blessing. Every day is a gift.

Laurie (middle) with friend Kim (left) and Vicki (right). 

Laurie and me.

Mom and me.