Monday, Feb 3
Day +45 Chemo
Day +6 Home

We are six days into adjusting to home life. It is a bit of a challenge at times, but we are finding our limitations and our strengths. Jennifer continues to be very weak and her appetite not great. As we are monitoring her weight loss, each day we continue to see a sharp decline. I don’t recall how long it took before she started eating again after her induction chemo three years ago, but it seems like this has gone on forever. It is one thing, among many, that I plan to address tomorrow at her appointment.We will head out to Columbus around 7:30 tomorrow. I’m a bit nervous as she is so exhausted most of the time, it is going to definitely be a challenge to get her up and going that early. Hopefully, with some anxiety meds before we leave, she will be able to relax most of the drive. She will definitely be wanting a nap by the time the day is over.We will definitely need some prayers as tomorrow we learn the results of her biopsy. The goal is the chemo has completely taken care of the cancer, her liver numbers are improved, and as soon as she is strong enough, to move to transplant. Currently, I think she will need 2-3 weeks, at least, before she is ready (if she is cancer free). I would hate for her to go into the transplant in the current condition she is in. Jen’s sister Jessica and nephew Andrew came over for a visit. I went with Jessica to the park with Andrew. I think I had as much fun as he did. I kept thinking, how much Jennifer would enjoy watching him play…and all I hope for in the coming months, is she is able to do just that. He was so excited to go up and down the slide by himself. Jen would just love love love watching him.
We have set up a meal train (currently have only a few days marked as we aren’t sure what the plan is after tomorrow’s doctor appointment). Also we have bracelets available for purchase. Please contract Jessica Crawford for more information on them.

Saturday, Feb 1
Day +43 Chemo
Day +4 Home

I didn’t get an update yesterday as it was a long day to and from Columbus. And by the time we got back…Jen and I were ready to just relax with a movie. While spending a birthday in a car for four hours and having a bone marrow biopsy isn’t an ideal way to spend a birthday, it was better than having to stay at the hospital

They ended up pulling Jen’s PICC line yesterday as they determined it had shifted more. This meant she had to be poked for a blood draw and again for an IV line prior to her biopsy. For the most part, she handles the needles like a champion. She is just tired of being poked so much.

Jen’s counts have improved. Her white count was just under normal, her ANC was in normal ranges, her hemoglobin was up to 9.0 and platelets in the 60s. This meant she didn’t need a transfusion yesterday. The improved platelets have helped with all the mucus in her throat, thus vomiting has not been an issue and hemoglobin is helping her not feel as tired when she is up walking.

Jen’s liver numbers had a slight increase but nothing too drastic. I’m anxious about those numbers improving as her transplant depends on it being in normal ranges as well as being in remission.

We will get the results of her biopsy on Tuesday, so that is lingering in our minds. It already feels like such a long wait.

One thing Jen got for her birthday is this projector that you can stream from your phone to. We are going to get good use out of it in the hospital in the months ahead.

Thursday, January 30
Day +41 Chemo
Day +2 Home

Happy birthday Jennifer’s aunt Kathy Honigford

Thank you Kathleen Schimmoeller for helping with the hair cut for Dexter.

And Shane Hill for stopping by to drop off cards

Also Linda Kaverman for the gift last evening.
I will be making a long post of thank you(s) when I sit down for a sec in the coming days.

We had a little Christmas (addendum) party and celebrated Jennifer’s birthday this evening. Andrew walks in the door and the first thing he says was, “Aunt Denny!” and runs right to her.

We thought we had an emergency last night as Jennifer started popping up a fever
. But by the time I got the car packed up, it was declining. It’s like that white count knows what to do. We checked it every 1-2 hours overnight…which made for a long day today. But after she got a five hour nap this afternoon….she was ready to celebrate with her favorite little guy.

Jen has her (birthday) bone marrow biopsy tomorrow in Columbus. …so she will be beyond exhausted tomorrow. I am considering if she is too exhausted to come home, I will get a hotel stay for a night and come back Saturday.

Tuesday, January 28
Day +39 Chemo
Day +44 Hospital Stay

After 44 days in the hospital and 39 days since chemo started, she is home.

Yes, we still count the days!

Today, over eighteen months since she was diagnosed and 422 days since her bone marrow transplant, I am happy to report how well Jen is doing. Not only are Jen’s counts awesome, she has been feeling much stronger than she has in a very long time….maybe even years.

Today, Jen had a hematology appointment at the James. As we walked in, I felt I had to introduce Jen to them as they had never met the young lady she is today. Her smile is back and her old self has returned . She talks  (just like her mom) without taking time to breath it seems like. She drove herself into Columbus (first time since getting sick) as I road as a passenger. Driving in city traffic means, she is able to focus on multiple things again!

She doesn’t have to return to see hematology for three months! That is like a new leash on life. She will see a dermatologist, rheumatologist, and gynecologist in the coming days in weeks as she continues to struggle with skin, inflammation, and lack of cycles. These hopefully in time will sort themselves out.

We accredit the much improvement to a few things . First, regulation with medication of spinal fluid after months of instability. Secondly, physical therapy that is helping to build her strength again. Also a change of diet that has removed carbohydrates and refined sugars from her diet. And finally, a nephew that gives her reason to get stronger.

Our 2018 word of the year is defining us well. BLESSED.

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.

Jennifer dressed  literally  from head to foot today in her Indians attire, ready for game five against the Yankees tonight. But first we had to get a couple pesky appointments in Columbus out of the way before game time.

We left before the sun was fully up to get to her eye doctor appointment at 945. Of course, as all appointments go, they were running behind. The beginning of the appointment was going well with very little eye dryness from GVHD and little, if any changes in vision. And then, the doctor found something that would change the course of our day.

Jen has swelling in both optical nerves and several hematomas behind the eyes. This can explain the spots in her eye sight (blood leaking into her vision) and her headaches. The eye doctor sent her immediately to the ER for further evaluation.

Upon arriving here, she has had an iv hooked up and recently came back from MRI. It  has been decided she will spend the night as they figure out the reason for these things.  Of course, some of the possible answers are frightening,  so the waiting is hard. But also, this place is so full of bad memories,  it is the last place we want to be.

I ask for a couple things as we sit and wait. 1. Prayers of course. We have felt the power of prayer. 2. To remember this is such a hard place to be for jen and myself. And for Randy, Jess, and Matt as they wait anxiously for answers back at home. It is a lonely and  a scary place to be. When someone reaches out to Jen or the rest of us, it often comes as we are feeling so helpless. And it is so appreciated.

Hopefully this is a short stay with positive outcomes. And hopefully the Indians win tonight and we can enjoy the rest of this post season from home.

I have been humbled in ways I never knew was possible.  When life took a turn for the worse nearly 11 months ago, I was not sure how possibly this could happen to Jen. Her gentle soul, her love for everyone was reason enough to not have to face the cancer that could end her life.

Why? I asked myself that many of times. I would be lying if I said I don’t still ask myself why. But some days, I see the why. God has brought Jen and myself down a path in which we would grow in so many ways.

To begin with, we have learned how one can be so completely generous without needing a thank you. A wonderful, unselfish 24 year old man gave Jen the gift of life. He didn’t do it for praise. He didn’t do it for money. He gave his bone marrow to give someone a chance at life and never asked for anything in return. Although I have written a thank you to him, and I hope he has received it, he has not made any contact back. I don’t know if he wishes to stay anonymous, however tomorrow will be six months since Jen has received his marrow and was given the chance to heal and live.

*Public Service announcement – You too can give someone the gift of life by getting on the registry to become a bone marrow donor. Visit www.bethematch.org to find out more.*

I also have learned how much there is to be thankful for in life. We are so blessed by so much and often we can’t see it as we are too distracted by those things we choose to complain about. On Saturday, I photographed my first wedding of the season. It was very hot for September. I sweated through my clothes and I was completely soaked only a couple hours into the day. In the past, this would be cause for me to complain. But instead, I knew I was blessed as I was able to work, make some money, and spend the day without fear of leaving Jen at home. I heard many complain about the heat. I heard many complain about many things. And I so wish, they could find a way to see the blessings without ever having to go through what we have in the last eleven months.

The doctors had told us to expect to see some of Jen’s strength to return at the six month mark. And that has been the case. In the last couple weeks, Jen has been able to attend two Cleveland Indians baseball games, gone to a flea market, and has painted my coffee table and a portrait of her cat Kodak. Her infectious smile has returned and her love for life has been restored. And although the battle continues, and lasting side effects still have to be addressed, to see the part of Jen that has been missing for so long, is like winning the lottery.  I am walking on sunshine!

Today, Jen had an appt at the hematology clinic in Columbus. She hadn’t been to a clinic appt. for three weeks so we were excited to see what changes we would see. To start, Jen will once again be decreasing the amount of meds that protect her from developing GVHD. As this medicine is decreased, Jen will experience less tremors and hopefully will be able to drive again. At the rate of current decrease, we can expect to be completely off of the medication in about two months.

Also since Jen’s platelets have come up, she will start taking a blood thinner. She needs to do this because she had blood clots and a pulmonary embolism. Although it is not expected she will develop more, this is protocol for anyone who has had one. Hopefully in a few months, she can stop taking tbis medication.

Jen also starts aquatic therapy tomorrow.  She has had a great deal of muscle loss and has been having a great deal of back pain. Hopefully the therapy will help her get stronger and the pain will subside.  She will have an mri of her back to be sure there isn’t something they are missing so we will make a trip to Columbus for that sometime in the next couple weeks

Now for the best news!

Praise Jesus! We prayed and He has answered our prayers.  At this time,  the doctors have told us Jen’s counts (other then her platelets being slightly low) have rebounded. Her white Count, ANC,  and hemoglobin are all normal.  This means the transplant has worked and means even less blood draws. Dr Minns also told us they do not see any reason to have any more biopsies as long as Jen shows no symptoms of low counts or her counts fall.

As Jen moves forward, the focus will be on continue decrease of medications, increasing her strength,  and emotional support. Jen currently appears to be suffering from some PTSD. This is quite common for AML patients, especially when they have had a ton of complications along the way like Jen. But we hope as time passes, Jen will also begin to feel strong emotionally once again. For now, we can support her by listening and by letting her know we are here for her. It was also suggested she spend time doing things she enjoys so be sure to invite her to the movies, to dinner,  to paint, etc. She may take time to feel well enough to go for long periods but in time,  God willing, she will inprove here too.