Leap to 2024

Mom with her Great Grandson!

 I don't know where the time has gone - and here we are in January, 2024!

I would say overall 2023 was a great year for many reasons. Mom celebrated her 14th year as an Ovarian Cancer Survivor! No one saw her surviving 14 years when she was diagnosed. In March, 2009, she was Stage 3 and was told that she had about three years. Fast forward through surgery and 5 rounds of chemo, we are here celebrating 2024. 

She did make it through 2020/21 without getting COVID, however COVID caught up with her in December 2022. It didn't really hit her as hard as I expected it to, and she recovered just fine. SO TAKE THAT COVID! 

All things said and done, mom is healthy and looking at no cancer issues at the moment. Her CA125 is stable and she has no other symptoms. She has already said that if something surfaces, she does not want any more chemo. 

HAPPIER NEWS - In 2023 we celebrated the birth of Sidney Hamlet Sparkman, our first grandchild and mom's first GREAT grandchild! He was born August 5, 2023 and has been a definite joy in our lives. I'm sure all grandparents say this but Sid is a special baby! So full of personality! Our Christmas was spent just watching Sid - open presents, play with tissue paper, stare at the tree.

Mom is still singing in her church choir and making quilts. She participated in the Geneseo Quilt Show last fall. We also made quite a few trips to Peoria to see her sister, Rosemary, who is in assisted living facility. She is in mid-stages of Alzheimers, and mom recognizes all of those behaviors all too well after going through the same thing with her (and Rosemary's) mom. 

Mom in church choir, front row, 5th person from the left. 

Because of my [NOW] family cancer history, and the fact that my mom's genetics are my genetics, I had a total hysterectomy in June 2023 to lessen my chances of ovarian cancer developing in my body. I was having some post-menopausal issues and my gynecologist thought the surgery was the best way to ensure that there was not time for any cancer to develop. The surgery went well, biopsies negative, and I am fully recovered and was able to at least squeeze one marathon run in for 2023.

The long and the short of the message is this: Ovarian cancer is the 5th most common cancer in women. Early detection is key and knowing the subtle symptoms (persistent bloating, pelvic/abdominal pain, difficulty eating, and feeling full quickly) and understanding the risk factors and family history are all a part of the formula to make sure that ovarian cancer is caught early. 

Christmas Island

The holidays were balmy in Rock Island! On Christmas Eve day all of our boys - Chad & wife Katie; Scotty and Stephanie; Ethan and Katie's sister Becki were in town for the day. We were able to have a nice dinner together and spend time hanging out and even went for a nice walk at Longview Park!

We haven't been able to be together for over a year - so it was nice to spend time with family. 

Mom has been relatively healthy this year in spite of COVID - and that is largely due to her being vaccinated + boosted and keeping a mask on. Her blood counts and checkups are going well and Dr. Porubcin doesn't see any cause for concern. Her cancer is being kept at bay. Those are the small (yet large) blessings that we are thankful for every day. 

Longview Park

Mom and Tom at Longview Park

NOCC Team TEAL for the NYC Marathon

This year I deferred my Chicago Marathon app to 2022 and joined the National Ovarian Cancer Coalition Team Teal Charity to run the TCS New York City Marathon! My fundraising page >>

The event was last Sunday, November 7 - and overall the team raised $315,000 for ovarian cancer research, education and awareness! I was incredibly proud to be among such amazing people who each had a story behind their motivation to raise money for the cause. We even had an oncologist and an ovarian cancer survivor on the team. That speaks volumes about how important this cause is to everyone. 

Running the New York Marathon was an experience in itself - ! To be honest I struggled a bit with this one...the late start for my wave (10:30 a.m.) and having to take an early shuttle to Staten Island and wait 4 four hours threw me off of my training routine. I still managed to crank out the miles. Cancer is tough, and I admire each and every person who has had to battle with cancer. That's what I kept thinking as I ran those - if my mom and cousin Heather and cousin Demara (and many friends) can go through chemo, then I can run 26.2 miles and deal with a little discomfort. 

Easter Blessings

Easter Sunday 2021! Mom is vaccinated (Pfizer); Ethan, Chad and Tom got on the Moderna train; and Scotty and I got the J&J one-shooter.  

THEREFORE - we were able to enjoy a nice Easter dinner together (made Coconut Cream Pie - Grandma McCann's recipe) and then sit outside for about three hours to visit and enjoy the sunshine! It was a great afternoon! 

I feel very fortunate that we all made it this far without a COVID diagnosis and were able to get vaccinated. If there is one reason to get the COVID vaccine it is to protect those people who are vulnerable... like mom - an 82 year old cancer patient with a weakened immune system. I know that we aren't all out of the woods yet...I'm still wearing a mask when I go out and using hand sanitizer, etc. but there is a little less worry in the air now that mom has a boost in her immune system with the vaccine. 

The month of March marked 12 years since mom was diagnosed with Stage 3 Ovarian Cancer. Her doctor checkups have been good and there has been nothing of concern. Easter is a time of miracles and mom is nothing less than a miracle. 

There aren't big plans on the horizon for right now - we are looking forward to Aunt Carol's memorial service in May and making a visit to the farm to spread the ashes. I think we need to get through more of the Pandemic before planning some travels, but at the very least we are able to get together and she can visit with her grandsons again. That is what grandma's live for! 

 

Holiday Postscript

I usually do a holiday blog post, but we didn't gather over the holidays, so there are no photos or occasions to review. We all kept our distance - Thanksgiving, Christmas and New Year's. 

Tom and I went out to mom's on Christmas Eve to deliver gifts and food... I made some more of Grandma McCann's apple bars! You can't beat comfort food on a bitter cold day - and it was cold! 

That was the extent of our Christmas. 

We are all doing what we need to do to make sure that we can have celebrations in the future when this pandemic ends. From mom's perspective - she has been through a pandemic before...or rather an epidemic - when the polio virus was running rampant in the late 1940's. Mom recollected that Grandma and Grandpa did not take them off of the farm at all during those years for fear of picking up the polio virus. There were as many unknowns for awhile, but the only thing that they knew they could do was to keep to themselves and limit exposure. So that is what Grandma and Grandpa did - kept mom and her sisters safe on the farm. 

Mom's health in 2020 has been great overall, and her doctor check-ups continue to show positive results. She is frail, but the cancer has been kept at bay, partly due to mom's great attitude and safe practices (wearing a mask, keeping distanced, not gathering) and partly due to continued prayers by family and friends. There is always room for prayer. 

Carol, Barb and Rosemary, Class Reunion 2019

A sad as the holidays were this time around, there was a greater sadness in the family - mom's sister Carol passed in the morning on New Year's Day. Carol had a terrible infection in early December and had to be admitted into the hospital. There was a little bit of improvement by Christmas however I think her body was weary and her spirit was ready for some peace.  

Our family gatherings won't be the same without Aunt Carol. She will be missed. In many ways she was the information conduit and family curator of photos, memorabilia and history. She was very social and the life of the party. At the Streator Class reunion in 2019, she knew just about everyone from each class and if she didn't know someone, then she was their best friend by the time the night was over. She even found a guy to swing her around the dance floor in her wheelchair. 

Aunt Carol on the dance floor!

Aunt Carol was a great gift-giver. If she saw something that she thought you would like or enjoy, she bought it. Many of the Christmas ornaments on my tree are from her from over the years. I still have a large ceramic bunny coin bank that she gave me when I was 7 or 8 years old. She painted it purple because she knew I liked the color purple. She also put a nickel in it and told me that I was to keep that nickel in there no matter what. I think she even threatened to check the bunny bank every time she came to my house to make sure that the nickel was in there. Well, Aunt Carol, the nickel is still there.  

L to R: Ruth/Sharon, Barbara (mom), Rosemary and Carol. Circa 1947(ish) 

L to R: Larry, Ruth/Sharon, Carol, Rosemary, Barbara. Early 1950's

Cancer, COVID and Small Celebrations

Each year when flu season comes around, I worry about people spreading germs and about mom coming down with some weird flu strain and how something as simple as the flu could take her down fast. Because it happens - I have known people to die from the [regular] flu.

Enter the COVID 19 Coronavirus. IF there was any good to come out of all of this, it is that people are wearing face masks (mom included) and are taking extra precautions. Mom's immune system has been severely compromised. Since 2009, mom has been through invasive surgery, 5 rounds of a variety of chemo cocktails and terrible (at times almost deadly) side effects. Her body can't fight infections like it used to and she is in a high risk category as we make our way through the pandemic.

Eleven years has passed since mom was diagnosed with Stage 3 Ovarian Cancer. At the time (2009), her prognosis was 3 years, tops. When I reflect, there was no doubt in my mind that she would live beyond the 3 years. I knew she was strong enough (and stubborn enough) to get through it. And here we are in 2020.

Valentines Day 2020 at the Cellar in Geneseo

These last 11 years have been a curse, but they have also been a blessing, because once you see someone live through the unthinkable, then you understand the important things... and the rest of it has to fall away.

Cancer doesn't hold the power that it once did - even though it is *technically* still lurking in her body, mom has turned the tables on cancer and silenced the effect that it has had on her life. The focus has not been on the cancer, but on the power of prayer and a positive attitude.

So this is a cause for a small celebration - even though we can't really celebrate together right now. I'm thankful to be at this point in the journey where she has made it through the worst and that her story can give someone else hope that they can beat the odds too.

In the same way, it gives me hope that we will make it through the pandemic. Cancer has given mom a new normal and the COVID 19 is giving us another new normal. Even though our lives are changed, we are still together.

Christmas 2019

Mom, Chad w/ girlfriend Katie, and Mother-in-law Anna.

Christmas 2019 - a busy week with family! It was a full house on Christmas Eve (three boys and the girlfriends!) and we all managed to squeeze around the dining room table for a lasagna dinner. As usual, we had our fill of cookies, snacks, candy, a very good variety of cheese (thanks to Chad).

On Christmas morning, Mom went with Tom on his daily walk through Longview Park. All said and done, they put in over 2 miles of zig-zagging around the park while Tom picked up trash. A little while later, we decided to walk to Friendship Manor (an assisted living care facility) to say hello to Tom's mom, Ann. It was such a beautiful and balmy day for the Midwest so mom got plenty of steps for the Fitbit.

As 2019 comes to a close, we have a lot to be thankful for. Mom has had good health overall, and her doctor check-ups continue to show positive results. The cancer has been kept at bay, partly due to mom's great attitude and partly due to continued prayers by family and friends.

We are looking forward to 2020 and hoping for more of the same - good health and good times with family and friends!

Aunt Carol, mom and Aunt Rosemary at the Seneca All-Class Reunion
in October.

September and Ovarian Cancer Awareness Month! Teal Toes!

My teal toes along with my cousin's and aunt's teal toes!

There are two great things about the month of September - my mom's birthday (Sept. 15) and it is also Ovarian Cancer Awareness Month. 

Teal is the color of Ovarian Cancer Awareness, and every year I paint my toes teal in honor of mom and recognition of Ovarian Cancer Awareness. 

My mom, Barbara, has been battling Ovarian Cancer for 10 years ... she is a strong girl and is a source of hope and inspiration to me. Her oncologist calls her his "miracle child."

I share mom's story whenever I can - about how there was no family history, the subtle symptoms and the too-late-diagnosis. Featured on the National Ovarian Cancer Coalition's website >>

Ovarian Cancer is often diagnosed after it reaches Stage 3. It's important to know the symptoms and signs of Ovarian Cancer and important to know that women can start a conversation with a physician about the seemingly littlest things... bloating, abdominal pain, achy back and even heartburn and frequent upset stomach issues. 

Because those little things can mean a big problem if not addressed immediately. Women have to listen to what their body is telling them. 

Post Port

This is a late post but an important one nonetheless. Mom's port was removed last Tuesday without much incident. There was a little more bleeding than normal - but she has been on Xarelto (SP?) for the last year and that was expected. She stopped taking it a couple days prior to the surgery but sometimes it takes a little while longer to get out of the system. The nurses bundled her up good and had her keep pressure on the incision points for over 24 hours and it worked out fine.

Some have asked about removing the port - and yes this is a good thing as there is no chemo in mom's foreseeable future. Her blood counts are great and her CA125 has been really low since her last round of chemo a couple of years ago. If anything changes, she will address it as it comes along. She is thankful for every day and I am too.

Mom is such a celebrity at Hammond Henry Hospital! I love going there with her. Everyone (nurses, doctors, volunteers) is always happy to see her and they don't go without saying how much she is missed (even though she has been retired 20 years) and loved. Truly wonderful to know she has impacted so many and I know she took good care of everyone while she worked there. Being a post-op nurse (and a surgical nurse too... she filled a lot of areas in that hospital) is not work for the faint-hearted. As we all know mom is a tough girl but also has a lot of compassion as well.

The only thing on our agenda for the fall is hitting a couple of mom's reunions - she has one coming up for her nursing class (in Peoria) and then a high school reunion in Ottawa in October. She's looking forward to both events.

Ovarian Cancer at Bay but Fight is Never Over

NOCC Illinois Walk May 2019

A couple of pieces of good news to share - mom had her regular check up with Dr. Porubcin last week and her blood work was very good and her CA 125 was at 7!

Even better news: Dr. Porubcin gave the go-ahead for mom to have the port removed! She is getting the port out on August 20.

Mom's story keeps getting better and better!

I wrote a piece for the National Ovarian Cancer Coalition's web site after we did the NOCC's annual walk in Chicago last May.


http://ovarian.org/component/content/article/33-latest-nocc-updates/554-keeping-hope-alive

This does not come without a lot of sadness however because we lost one of our own to ovarian cancer last year. I think about my cousin Heather just about every day. Her cancer was really far along before she was diagnosed and for a while things seemed ok but eventually her body caved in. Her spirit never did however. 

So I can talk about having all the hope and praying that I want to, but it doesn’t erase the underlying fact that Ovarian cancer is a very silent disease, and every woman and man should know the signs and symptoms and be aware. 

I’m a  firm believer that whatever energy you put out an universe will come back at you tenfold, whether it’s good energy, or bad energy. Let’s make it good energy. There are others out there fighting their cancer and they need a lot of prayers. 

All Roads Lead to Ransom

Jerry's Tap in Ransom, IL has been a McCann family hotspot for decades, so when Aunt Ruth and Uncle Bernie came into town last week from Kentucky, that was the place where everyone wanted to meet. No matter where anyone lives, when it comes down to it, all roads lead to Ransom.

Every now and again I think of something my dad used to say to me - "There is no such thing as time" and I wonder if he must have been referring to mom and her siblings. I have learned over the years that the McCann side of the family has their own individual concept(s) of time. However, the stars must have been in alignment on Tuesday, May 7, 2019, because everyone - mom (Barbara), Carol, Rosemary, Ruth and Larry were able to be in the same place at the same time.

Mom and I were not able to make it back to Ransom last January for Heather's memorial service, so mom and her sisters went in together and purchased an angel in memory of Heather and gave it to Uncle Larry, Aunt Marilyn and Dax. Mom also gave Uncle Larry a quilt she had made for him with a big star on the front in honor of his time serving in the army during the Vietnam War.

It has been 10 years since mom's cancer diagnosis. She really did not believe she would be here today. She is thankful, as am I, but it is somewhat bittersweet, because we lost Heather last December. Heather's passing is still fresh and it was not the same at Jerry's without her there.

Mom and I are going to the National Ovarian Cancer Coalition's (NOCC) 5K this Saturday to walk in memory of Heather. Heather did the NOCC walk in Chicago for the last 3 years and also raised money for the NOCC. I deeply regret not walking with her last year.

We have a McCann group (cousins Alaina and Jane) and also many of Heather's friends and S/O Chris are also walking on the team Together 4 Heather and raising $ for the NOCC for Ovarian Cancer research and support.

Remembering Heather is easy, but living without her [here] is hard for many.

Aunt Carol, Aunt Rosemary, Aunt Ruth, Uncle Larry and Mom (Barbara)

Mom and Uncle Larry

Uncle Larry, Aunt Marilyn and Dax

Silence Like a Cancer Grows

Dr. Porubcin dubbed mom as his "Longest Ovarian Cancer Survivor" patient at her last check up! What an amazing, awesome thing that is!

This month, mom will be coming up on 10 years since her cancer diagnosis. Rewind to March of 2009 - a year after Grandma (mom's mom) had passed from Alzheimers. Mom was traveling, Jazzercizing 8 days a week and enjoying retirement. Then life came to a halt and the word CANCER became a part of the vocabulary... even though many factors were not certain - what kind of cancer did she have? How far did it spread? What was her outlook? Ovarian Cancer did not have a good reputation. The general prognosis was that she had about 3 more years, based on survivorship statistics.

She has beaten the odds!

Ten years ago Ovarian Cancer was the silent killer - the cancer that grows in silence until it is often too late in the game to turn the odds in the patients favor. I'm sure that the cancer was growing inside her, silently, for a long time. By the time we found out, mom was Stage 3.

In the last 10 years, mom has not only been through surgery, 5 rounds of a variety of chemo cocktails and terrible (at times almost deadly) side effects, but she has also served as a rock and resource for others around her who were also diagnosed with cancer. Mom has also been a rock for those families who have lost loved ones to cancer.

I think that amid all of the complexities of cancer, mom would credit two things to her survival: prayers and a positive attitude. These last 10 years have been a curse, but they have also been a blessing, because you understand the important things... and let the rest fall away.

Cancer has taken a back seat. The power of prayer and a positive attitude are at the wheel now. Mom is surrounded with love and family and friends. Cancer cannot compete with that.

Very Merry and Blessed Holiday

The whole Fam! 

Christmas 2018 came and went. We had a full house on Christmas Eve (three boys home at once!) and we all managed to squeeze around the dining room table. I tried to fill mom up with as much cookies, candy and lasagna as she could handle and I even made Grandma McCann's "Snack Puffs" recipe - Corn Pops with a caramel coating (just downright evil). Tom and I got mom a new and improved FitBit that has more features than her other one, so I'm sure she will be walking off those Snack Puffs around Geneseo for awhile!

The holidays have not been without heartbreak. We lost my cousin Heather, who was diagnosed with Ovarian Cancer a couple of years after mom was diagnosed. Things went rapidly downhill the week of Thanksgiving. Heather had been in the hospital for a couple of weeks with a lot of small bowel issues as the lesions on her organs had rapidly expanded into tumors. Surgeons took a look and determined that there was not a lot to be done, Heather went home with hospice care and passed on December 5. She was only 46.

Mom and I went to see Heather a few days before she passed. For the first time in six years (since she was diagnosed), I really got the full effect of how much the cancer had sucked the life out of her. Heather was always sassy and full of fun... even in this last year, but her last couple of months of life were less than wonderful as her body caved in to cancer. It was ugly and painful but I am comforted by the fact that she went peacefully at the end.

The week before Christmas, mom also lost one of her dear friends, Judy DeBoever, to cancer. Judy was diagnosed with breast cancer before mom was diagnosed with her cancer, and Judy was a world of help and inspiration to mom as she was going through her surgery and chemo. Over the years, Judy's cancer metastasized to bone cancer and then to her liver. Judy's health took a turn for the worse right at about the time of Thanksgiving and she passed on December 16.

I had only been around Judy a handful of times... but she was one of the most enthusiastic people I will ever meet. She never let her cancer get her down, and I think that is why mom has that same attitude about cancer. It is not going to get her down either.

We were blessed to have a nice holiday with family and friends - and are looking forward to an uneventful 2019 other than routine visits with Dr. Porubcin and the usual blood work and port flushes. I'm sure we will sneak a few road trips in as well!

Thankfulness and Prayers

Mom and me at Fireside

Mom and I took a bus trip last week to see ELF at the Fireside Theatre in Wisconsin. The group was organized by her bank club - the "Classic Club" and literally all we had to do was to get on the bus. We had a great time and ate too much food... but that is what those kind of days are for. I was thankful for the day together. Next year's holiday production is The Christmas Story so I'm thinking we will have to make the trip to see that one - bus caravan or not.

Mom is doing well and has been getting along fine this year other than a few aches and pains here and there. Unfortunately, we had some grave news this week about my cousin Heather. She was diagnosed with Ovarian Cancer a couple of years after mom. The scenario was the same - with no cancer history in the family Heather's diagnosis was not immediate. Once Heather was officially diagnosed, she had two large tumors in her abdomen and not a lot of time. After surgery and large rounds of hard core chemo it seemed like things were manageable, until a few months ago.

Heather 2016

Heather went into emergency surgery on Wednesday as she was having major intestine blockage from tumor growth. The surgeons opened her up to take a look and determined that the tumors were too aggressive. Lesions had grown into tumors in other places. The outlook for Heather is not good and there are no words to say that is going to make everything all right. Many many prayers are needed for Heather and her family.

In the world of cancer, things happen so fast. I do not take that for granted, however I know that the force of prayer can do amazing things, and I hope that in Heather's case it will. It worked for Demara (cousin) and it HAS to work for Heather too. Hope and prayers.

Chicago Marathon and 4.9 CA 125!

4.9! Mom had a checkup with Dr. Porubcin yesterday and her CA 125 is still below any levels of concern! It's a good feeling. Each time she has a check up, you never know what the results will be until you hear it. It's a nice relief and we can go on enjoying the rest of the summer.

Last night mom sang in the Geneseo Community Choir event (all 2 hours of it!) and I was very proud of her and happy that she was able to participate. This weekend we are going to a house tour in Geneseo on Saturday and then we have a McCann reunion in August so there are plenty of things to do!

I decided to run the Bank of America Chicago Marathon again this year on the American Cancer Society DetermiNation Team! Last year was my first on the team and I had such a good time that I want to do it again for a number of reasons - but mostly to help raise awareness for those who are fighting cancer and to raise funds for the American Cancer Society. They do a lot of good work and I'm happy to be an advocate.

Cancer is tough, and I admire each and every person who has had to battle with cancer. That's what I kept thinking as I ran those 26.2 miles at the Chicago Marathon - if my mom and cousin Heather and cousin Demara (and many friends) can go through chemo, then I can run 26.2 miles.

I have a page set up for donations! Please help me reach my goal with the American Cancer Society >>

Great Aunt Barb!

Mom and I took a trip to St. Charles, MO over the weekend to see Grant, Kira and Erin Stock (cousin Melinda's three kids) graduate from high school and also to spend some time with Aunt Rosemary, Uncle Steve and cousin Laurie.

I can't believe how time flies - it seems like these three were babies only last year! Hanging out at the graduation party was like reliving when Scotty and Ethan graduated. It was a nice mixture of friends and family, and fun looking at all of the photos from the last 18 years.

Mom made each of the triplets their own quilt. I can't remember what triplet is going to what college, but at least they will be comfortable with a quilt from their Great Aunt Barb!

It was a fun getaway. This was the first long road trip in mom's new car she got back in the fall (a 2017 Chevrolet Equinox with all the bells and whistles) and mom was comfortable the entire way - we stopped when we needed to stop and took our time getting there.

Beautiful young ladies Erin and Kira! 

Mom, Aunt Rosemary, mom of triplets Melinda and Uncle Steve!

Me and Laurie! 

Kira, Erin and Grant

World Ovarian Cancer Day 2018

Me and mom, circa 1969

Today, May 8, is World Ovarian Cancer Day #WOCD

We have come a long way since 2009 when my mom was first diagnosed with Ovarian Cancer. In the last nine years, my mom has beat the odds, survived beyond what was expected (three years) and is considered by her oncologist a "miracle scenario."

Even after all of this time, Ovarian cancer still has the lowest survival rate of all gynecological cancers according to the National Ovarian Cancer Coalition. Ovarian Cancer is STILL characterized around the world by a lack of awareness of symptoms and late stage diagnosis.

My mom was Stage 3 when she was diagnosed with Ovarian Cancer in 2009. Her symptoms were mild at best. She noticed a change in her bowel habits, but was that enough to go to the doctor and be concerned? For her, yes as she was a retired nurse (and we all know that nurses don't turn their brains off EVER - regardless of if they are off the clock much less retired). My mom went to her physician where they did a pelvic exam. The she had a colonoscopy. Then she had a scope done down her esophagus to see if there was any clue to her symptoms. The doctors didn't find anything abnormal.

We now know the cancer was there, festering. At that time, Ovarian Cancer was a big unknown to both of us. There was no family history of ovarian cancer...so why put it into the equation?

Then my mom's body started throwing out more aggressive symptoms - and in a month's time her abdomen had bloated so much that she looked like she was in her first trimester of a pregnancy. After the doctor drained the fluid (over a gallon) and ran tests - the diagnosis was a reality: Ovarian Cancer. It changed her world and the world of everyone around her.

I am so proud and blessed to say that she is still here - after aggressive surgery, 5 rounds of chemo and thousands of prayers every day.

So, on this day, May 8, World Ovarian Cancer Day #WOCD if ONE person (woman or man) reads this and takes the time to read about symptoms of ovarian cancer ... that is enough. It is enough to know the symptoms and keep them in your head, because it is crucial information you can use to combat Ovarian Cancer before it gets out of control. Ovarian cancer is treatable if you can get to it early.

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 Amazon.com because I can. Demara can't go without a stem-cell transplant, and Demara's family can't go without her.

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

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!