365 days ago, my phone rang and I got a call like I’ve never had before. It was a call from the office of hematology in Lima and the receptionist had instructed me to call Jen’s doctor.
I knew immediately the news was bad but I made the call with Randy at my side. I dialed his number while sitting on the edge of my bed. The words your daughter has leukemia still rings in my ears. I was able to keep my composure during the phone call but as soon as I had hung up, tears stream from my eyes and I gasped for air. I cried harder than I probably have ever cried before in my life. When I finally got the strength to pick myself up and walk out to the living room and face Jennifer, my legs barely carried me. Jennifer too knew before I even had to tell her.
Like a strong brave soul she has shown us over the last year, she showed such great strengths in those first days. She called her brother Matt while I called her sister Jess. Next I called her grandmother as I stood outdoors in the cool November air. Telling her grandmother and her sister the news and saying the words Jennifer has leukemia, felt so foreign.
From there I looked for someone to console me and I walked over to my neighbors and fell in the arms of Sparky and Doris Brinkman. I needed to cry but needed to be strong for Jennifer so I couldn’t fall apart in front of her. I eventually gathered myself and walked back home and packed my bag to take Jennifer to the James Cancer Hospital in Columbus.
When we learned a few days later that Jennifer was considered a poor risk and would need a bone marrow transplant, I had no idea what all that meant. But I have learned so much over the last 365 days. Transplant meant, many weeks in the hospital, a huge hurdle to leap. It meant Jennifer would have the fight of her life.
So it makes sense after 365 days of being nothing but the family fighting cancer to share some good news. After many years of waiting and praying, my oldest daughter and her husband Chris are expecting a baby in April. My first grandchild and Jennifer first chance at being an aunt. And 2018 promises to give us hope. We are so very blessed.
* Good News Report Today*
1. No transfusions. If she notices more blood in nose between now and Sunday she can go in on Sunday and get blood products
2. (And this made me scream with delight) NO CANCER IN PLIMINARY BONE MARROW RESULTS!!!!!!
3. We went to hospital and left on the same day (and in less than two hours may I add)
Good morning from The James! Jessica here again. Jenny’s vitals were all pretty normal all night and we went the full evening through this morning fever free. Jenny’s had several coughing fits, one that made her get sick, but they found a couple medications that have helped clear up her congestion and quieted her cough.
She ate a little breakfast this morning and the plan is to go for a walk when some of the spaciness had worn off from the cough meds.
Thank you all for your continued prayers!
Yesterday my thoughts were on how it’s been 20 years since we said goodbye to my grandma. I almost forgot until tonight that is that yesterday marked 4 months for me.
4 months ago yesterday we got the call from my Doctor that we needed to go to the James. That I was sick. That I had leukemia. That I had cancer.
Even though my official diagnosis wouldn’t be until a few days later. That day my life changed.
The lives of my family changed. Life how I thought would be for me went out the window. Although I know I will beat this there is so much of my future that is still unknown.
For instance. I don’t know if the transplant that I will get here in 2 weeks will leave me unable to have kids.
I’ve always pictured myself being a mom. And I know I will be a mom. But I may never get to experience being pregnant. There are days this saddens me more than I can even begin to express. You hold an idea of what your future will be and then poof it’s gone.
Or how it will take me two years or more for me to grow my hair back to the length it was before this all happened. That I will have to have “boy hair” as I call it for months before I may feel girlie again. And the fact that my hair color my no be brown.
I do the best I can to smile and look for the blessings in all this. Most days are not easy but good enough and happy. But there are days where it is very hard to smile and put on that brave face.
I am so blessed to have my amazing family at my side. I couldn’t imagine going through this without their love and support. I know this hasn’t been easy on any of them.
There are days that I worry about my mom not working so she can take care of me and drive me to appointments. There are days where I worry that my dad will be too focused on me while at work and something bad will happen. I worry how I will be able to afford not being able to work for another year. How will I or my family pay bills if two of us can’t work.
But then I think about how I’ve been blessed with an opportunity to share my story. To spread the word of the need for donors through Be The Match. How I may be able to change the world and help others while I fight the hardest fight I will ever know.
So as I write this tonight I hope all of you embrace what you gave in front of you. Don’t take for granted the small things in life like being able to drive a car, to walk, to breathe comfortably, to being able to work and make a living, or knowing you can one day have your own family. Don’t lose sight of what is in front of you. Because one day you may wake up and everything has changed. Enjoy life. Make a bucket list and live your life. No regrets.
I hope out of all this ugly cancer that is for sure no damn fairytale that someone out there finds peace or hope or whatever it may be for my story. I hope my being sick and my fight is good for something or someone. So tomorrow head into your Monday not with dismay because it’s the start of another week. Go into Monday knowing you have a new week to embrace life and live it to the fullest every chance you get.
Tomorrow my mom and I travel to Columbus to be there for my Biopsy on Tuesday. I know all signs still point to remission with me but I still worry about it throwing and hitch into my transplant plan. Keep me any my family lifted up in your thoughts and feelings prayers as we prepare for battle.
Love you all! God bless. Goodnight.
At 33 weeks gestation, Jennifer was born. Back then, we didn’t say it quite like that. We said 7 weeks premature. Jen’s lungs were immature and she only weighed four pounds 5 ounces. But this little baby had eyelashes like she had mascara covering every lash. Besides her tiny size, it was the first thing you noticed about her. And this drew you in to her deep eyes.
When Jen’s hair fell out, I found her eyes just drew you in even more. And when she shot you one of her big smiles, your heart would just melt away. Over the last few weeks, Jen’s eyebrows and lashes have been thinning. And like when her hair fell out, the change has been hard for her. Not hard like maybe you and I would find it, Jen is stronger than most others, including me. But hard like another thing she adds to her list of how much her life has changed over the last 100 days.
Funny yesterday when she had made note of her lashes and brows thinning, I had just prior to that had thought my lashes were so short and my brow so needing a touch up. And I had frowned at myself in the mirror, not liking what I saw. Stupid me…..sometimes I have no idea how ignorant my thoughts can be. Maybe some day, I will see the blessings of short lashes and thick brows.
Her attitude is still very good. Her bp most likely low (100/50) because she is dehydrated so giving her fluids. But her wc has dropped way down so the trend up has stopped. This most likely because of an infection. They think it was the pic line that was infected so it was pulled and a new central line put in at her neck. She is fighting fevers. Her pulse has remained decent in the low hundreds. And respirations in the low 20s.
Also she received a hemoglobin transfusion this morning
For the last 3+ months, our lives have changed dramatically. As it has changed, we are also now witness to the many others who have the same journey we have. Each day, whether at home or at hospital, we find ourselves in discussions with other families who are learning this difficult path. When we sit down to eat in the cafeteria or take a walk to a restroom, we encounter the world of cancer. Or if we participate in a conversation in a support group, we often hear of the daily struggles.
Each day, you start with sorting out medications, appointments, new terminology you hadn’t heard before, and new staff brought on board. Connections to your pets, children and spouses change and rely on pictures and phone calls. The world looks different then ever before.
When you start thinking about the overall cost of it all, it is mental, physical, and financial. Mentally you cope as best you can, attempting to live in the moment but your dreams lash you into your subconscious mind. Physically you are exhausted. You find yourself no longer able to wear the same clothes as your weight falls or rises. And body aches from the tension and from sleeping on hospital furniture.
The things you are having to spend money on haven’t been budgeted for. Tanks of gas to and from hospital, to the pharmacy, to the doctors. Money for parking, even at $2 a day drains your pocket. Petcare, eating on the run, and double the number of hairbrushes, hairdryers, and shampoo because you no longer are all in the same place at once. They all add up. And when your income takes a hit from not being able to work, you go back to the mental anguish that enters your dreams.
The loss of another across the hall rings loud throughout the floor. The biggest fear of death is only compounded by all the other stresses. And the floor at the hospital becomes so stressed by all those fears.
This is cancer. This is the life of so many each day. This is not only my life, but too many in this world. So care a little more. Complain a lot less. And live each day to the fullest.
A friend of mine’s mom. May Lisa rest in peace.
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.