Janice’s Story

Janice was diagnosed with Acute Lymphoblastic Leukemia (ALL)  in December 2017, only fifteen days after turning thirty-six. For weeks prior, Janice had been feeling off. Just before Christmas, Janice had daily headaches that would turn into migraines and was extremely fatigued and had incredible pain in her feet and knees. She also found a swollen lymph node on the back of her neck. All this made her quite anxious so she went to her doctor. 

Her doctor ordered some bloodwork but told her it could take awhile to get the results back. So under her doctor’s advice, she went to the ER.  And from there she was transferred to a larger hospital that specialized in blood cancers. as the ER doctor was suspecting Janice had leukemia or Lymphoma. 

The next day, Janice had a bone marrow biopsy to determine her exact diagnosis. She also had daily blood work and a Hickman Line placed. Chemotherapy was started and Janice spent the holidays in the hospital. 

Janice received several phases of chemotherapy as the search for a bone marrow donor was underway. Once remission was attained, Janice was readmitted to the hospital and they prepared her for a stem cell ransplant. She underwent intense chemotherapy and a total body radiation. 

In June 2018, Janice received a stem  cell transplant. Her donor was a young man from Europe who was found through the international stem cell donor registries. When a donor is from overseas, it is required to wait two years before contact information is shared, so Janice had to wait to request that information. A couple months after making that request, her donor was able to contact her and they have been able to email ever since. Unfortunately due to the pandemic, they will need to wait until travel becomes safe again. 

The stem cell transplant was the most grueling thing Janice has experienced in her life. She spent a month in the hospital suffering from nausea, vomiting, diarrhea, c-diff infection, mucositis, esophagitis, exhaustion, and so much pain. She was unable to eat for days and was attached to a pain pump to help ease the pain. Janice found sleep difficult and even using a restroom was nearly impossible. Once released from the hospital, Janice spent only a few days before having to return. She was readmitted because development of graft vs host disease (GHVD)  of the gut.  Two years later, Janice is still dealing with the effects of chemotherapy and radiation and has lingering GVHD of the skin and lungs.

Before Janice’s diagnoses, she was enjoying her career and was trying to start a family with her husband. They had bought a house the year before. But ALL changed everything. It left her infertile, leaving them to put on hold the idea of building a family. With chemo brain, pain, and excessive fatigue, she has not been able to return to work either.  Not only has she lost her ability to work and have children, she has experienced hair loss, poor eyesight and hearing. Having loss of income has also been difficult. Time stolen by cancer has also taken away her trust in her body, her health, and confidence in a future she once thought would include cradling her grandchild. She describes it all as “a rollercoaster ride through hell,” as she now fights new diagnosis of hypothyroidism and hypertension, along with the fatigue, pain, chemo brain and a shortened life expectancy. 

Janice has a new appreciate for life. But also has built new friendships with other cancer warriors. She has found great support through this community of people which allows her to embrace life and find joy in every single day. 

Thank you Janice for sharing your story with us. We will keep you in our prayers to find peace and healing. 

Luke’s Story

Just days before his third birthday, Luke was diagnosed with PRE B ALL, a type of leukemia. He hadn’t been feeling well for about two weeks and had fevers every evening that would go away by morning. He had pneumonia and seemed to be getting better. And then just prior to finishing the antibiotic, his fever returned. His doctor decided to order some labs. And Luke’s journey at Promedica Toledo’s Children’s Hospital had begun.

Of course little Luke was scared of everything going on around him and often ask his mommy, Heather, “What are they going to do to me,” whenever a nurse or Doctor came into the room. Luke started chemo that lasted for three and half years. It made him sick and his fair fell out. Less then two months after completing his treatment, Luke relapsed. He would need to receive more chemotherapy. Unfortunately,  the chemo wasn’t working. Luke became qualified for immunotherapy, CAR-T cell. And it worked!!!  So now, Luke goes monthly for IVIG which helps the immunotherapy get rid of Luke’s B cells.  Luke did not have a donor on the Be The Match list, so if he would ever need a transplant, his dad would be his donor. Parents are always haploid or half matches for their children.

Luke, like most kids his age, wants to be a normal kid, go to school and play on sports teams with his friends. He and his family has missed many birthday parties and even Christmas because he was in the hospital with a fever. It has been hard to give up so much time with family and friends because he is immunocompromised and needs to be very careful to stay healthy. 

Luke was blessed with being able to do the Make-A-Wish program and got to go to Disney. His family has grown in their faith and has witnessed so many miracles. Prior to Luke getting sick, his mom Heather says she had not paid attention enough to recognize them. “We do not take things for granted as much as we once did.” Heather states. “God has the perfect timing for everything. “

Thank you Heather for sharing Luke’s story with us. We will continue to pray for him and his family.  

Day +62  – Good Days & Daydreamers 

I knew when I went this morning to the hospital it was going to be a good day. Not just a good day, a great day! Jennifer downed a bowl of cereal without much hesitation.  Eating is always a good sign of feeling better. Not too much before 10am, her doctors showed up with the news that Jen could leave the hospital. And by 11am, we were driving away from South Canon Garage.  

We weren’t at the hotel for more than an hour and already Jen was looking to do something.  Another good sign. We decided to go down to the Short North and enjoy this beautiful Memorial Day. We spent a good couple hours window shopping, as many shops were closed for the holiday.  I got my workout pushing a wheel chair. I had to learn how to avoid bumps in the sidewalk.  Luckily, Jen survived my wheelchair workout. It really isn’t an easy job when you stand 5 feet nothing and can’t see much over top the chair. 

After the Short North,  we drove down to German Village to enjoy the brick streets and picturesque houses. Jen became tired quickly and so we came back to the hotel to watch the Indians on TV and relax.

The day was just what I have been missing terribly. Nearly every outing thus far had left me worrying a great deal. The look on her face usually tells me she isn’t enjoying herself, but today that face didn’t show itself until after our drive through German. Village. For some this may not seem like much, but to us it was so uplifting.

Now as she rest,  I sit here day dreaming.  I haven’t given myself much permission to daydream. Especially not daydreams that include Jen. When I had, it had always left me feeling sad. But not today. Today, I’m daydreaming about the future, Jen’s future. Jen has such a passion for so many things.  And so I daydream about her doing the things she use to talk much about. 

The girl would love to travel. To Africa to see the elephants,  to Italy to see the art. She would love to spend days on the beach or near a mountain or a river, drawing or painting the day away. Or working in her quaint little shop, that has a loft,  painting or restoring a piece of furniture or maybe building a new piece with her dad. Or maybe sit by a big picture window  watching the rain as she designs something in photshop on her dream computer, a Microsoft Surface Studio. Or maybe head to Waco, Texas and work with Jo-Ann from Fixer Upper on HGTV.

Jennifer is definitely my daughter because she has so many paths she would love to pursue. And for the last several months, I quit thinking about those daydreams.  Until today. Today was a good day. A day for daydreams. 

Day +61 Give Blood – Receive Blood

So here we are at the James. Jen’s fourth readmission since receiving her transplant.  Readmissions are common but each time she has been able to stay out of the hospital longer. 

So far her doctors  have discovered she was dehydrated (most likely from getting sick) and she needed red blood cells (hemoglobin). Both can explain her fatique and overall weakness.  Her hemoglobin count was at 6.4 which under 7 gets her a transfusion. 

Again because someone took the time to give blood, Jennifer is able to receive it today. Maybe even someone at the Parish Hall in Ottoville last week. Whomever it was, thank you for giving. Blood transfusions have become vital for Jen to get well. 

Before Jennifer got sick, she gave blood many times. Now she is in need of blood and we are learning how important giving blood has become. I hope no one I love has to ever learn the way we have how vital it is. But please, give blood so someone can receive blood. 

I’m back here in Columbus with Jennifer. She is still making others on the transplant floor look bad as she has rolled through day +8 now without fever or vitals being an issue. Her and I went to the support group meetings they have here for patients and caregivers. The nurse and social worker were amazed someone at day +8 allogeneic BMT  (meaning non related donor) was up and going to a support group meeting.

Having said that, I can tell you Jen is feeling fatigued. She still cannot overcome this cough and she told me this evening she just can’t get comfortable and rest like she wants. She fought tears back while telling me this. So now I’m on a mission to find her some relief. I pride myself in being persistent. …. aka Momma Bear.

We found blessings everywhere we could find them today, …maybe more me than her. Her grandparents stopped in Columbus on their way back from Florida.  It is the first she has seen her grandpa since her diagnosis and first she has seen grandma since early December.

I also found a blessing or maybe knowledge I needed to find today at the support group meeting.  I had questioned us going as I thought maybe Jen would just want to rest. But we went. There have been times,  I hope for Jen to be excited about something or looking to go do something she has been wanting to do. I want the world for her and will move mountains to make it happen. But sometimes as I am spinning circles moving mountains, she just wants to stop, rest, and heal. For a while even small things can seem overwhelming.  Reading text messages and responding,  opening a card, calling her insurance company, or filling out a form. I find myself repeating to her what needs done like a mom of a teenager. I actually realized this has been ongoing for nearly a year. Which makes me wonder how long she fought low counts and fatigue. I thought before cancer this was due to laziness. After her diagnosis I thought it was a sign of her surrendering to her illness. I was wrong on both counts.”   It is cancer, chemo, and healing. I needed to learn that.

So prayers tonight for a quieted cough, less fatique, and patience on my part. She will get through all this. And so will I.


Maybe Day 1 yet today….

This morning a new doctor on Jen’s case came to see her. A new look at her brings a new view and a different approach. Although we were disappointed Jen didn’t start chemo yesterday, the delay may have been a blessing in disguise.

The doctor looked at her file before coming in and had a couple questions about why induction chemo and not consolidation. Because her counts remain well and because it seems as the cancer cleared up, so did the rashes, he wondered if she is actually in remission.

He shared with us there was a test that had not yet gotten back that is more specific at looking at the abnormal cells and determine if they are premature new growth cells or cancer cells. And he thought possibly some since her numbers are in average range, this very well can be the case. He also thinks possibly the rashes are leukemia in her skin and as her cancer improves, so did the skin.

So while waiting on that test result, Jen gets results of her echo this morning. Frequently, induction chemo can do heart damage. When young like Jen, the heart repairs itself over time. Jen’s heart showed some damage. Then earlier then expected, the result from her biopsy comes back. And it is a good news, bad news thing.

The good news is because the need for time to repair her heart, they think consolidation chemo is the way to go. This means five to six days in hospital and home. It is not as intensive, shorter stay, and saves the induction chemo for transplant. The bad news is she truly isn’t in remission, as the doctor had hoped.

So now with a different plan, she moves forward with 2 hours on chemo and 12 hours off and that repeats for five days. And to her delight, she gets to come home early next week and be home for her birthday.

A Word From Jen – Christmas Eve

Hello facebook family and friends. Yes it is truly me. It has taken quite some time to get me to this point to make a post to all of you. As most of you may know I wad quite sick over the past week.

With all the meds they put in me and fluids and being bound to a bed I put on nearly 50 pounds of pure water weight. Half of that thankfully is gone.

My focus issues are still hard to deal with but pushing my limits the best I can so I can get better sooner.

I am working with physically therapy to help me regain my strength while I walk. That too has come leaps and bounds in just the past 24 hours.

We are currently on Day 25 of my admission here. The doctor’s told me yesterday to expect another 10 days plus inpatient therapy program. After today I feel that I may only need out patient therapy and then I could potentially be home by mid next week.

My numbers and counts for my wbc, hemoglobin, and platelets are continuing to get better every day and if it weren’t for my spout with pneumonia I would be home already. My numbers are pushing lower level normal levels for a non sick person.

Today my Aunt Diann Neal and Uncle Ernie came for a visit and my family also came and hung out with me for Christmas eve. Although it sucks to be here through the holidays I am truly blessed to be here today.

Live to love love to live.

Christmas Eve

Merry Christmas Eve!

Jen continues to improve. No fevers since Thursday evening. No oxygen for the last 24 hours. Today they are taking off the cath and heart monitor. One more day of antibotic however I convinced doctor to wait until 7pm (normally 5pm) to get it as the premed for it makes jen sleepy. The doctor said her ANC is up and he no longer hears crackles when she breathes. All positives.

Jessica Crawford and Matt Honigford are on their way down to celebrate Christmas with her dad and I.

Make today a great one! And be sure to remember the reason behind Christmas.
Love ya all!

We are definitely being blessed as Christmas draws near. All Jen’s counts are improving. Her pulse rate and respirations so much better. Her swelling going down. She is off the oxygen so she will get to shower today She had no fevers over night and slept much better and so did I. We found a place to board dogs over night this weekend! Thank you Donna Bendele at Five Star Pets.

Randy, Jess, and Matt are coming to Columbus to spend the weekend with me and Jen. Things are looking up.
Merry Christmas to all of you. We are so blessed this year with so much love and support!