Everyday I worry. I look at Jen and worry. Some days, I see illness in her. I could see it even before I knew it was leukemia. Jen has been fighting a cold for some time now but in the last week + she has been coughing a lot. And each night, I hear her in her room, across the hall from me, coughing…. I pray for her to stop and be able to rest.

Yesterday I decided we needed to have her accessed to make sure this cough hasn’t become something more. I called the James, and asked their opinion. So off to Delphos Ambulatory Care we went to have her lungs listen to, her vitals and counts checked, and a chest xray. And other than they think maybe the cold has turned into a sinus infection, everything turned out ok.

But I still lay here and worry. I know most mommies can understand worry, but this goes deeper than the worries I had prior to cancer. Nothing I can even put into words. Nothing I would wish on anyone. It is painful every moment of every day….even as I sleep.

I just asked Randy when life will feel normal again? Will it ever feel normal? When can I lose myself in my camera or deposit a check into my business account? When will I stop trying to wrap my head around cancer? Or stop praying I figure out how we keep our heads above water? When will Jen get back her energy enough to paint me a masterpiece and will it be before she has her transplant? When will she be once again be strong and ready to take on the world? When?

I’m told this is a marathon….one that goes on for many years. And although come maybe fall, it will slow. ..the watchful eye goes well into 2022 and maybe beyond. 2022! That sounds like a year out of futuristic movie where we are all flying around like the Jetsons.

So as each of you dread your Monday, I’m hoping maybe my Monday isn’t too far off. It’s much easier having some control over your life and the direction it’s going, than lying here listening to her cough. Never forget how blessed you are…..and always thank God for them.

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As we sit waiting for Jen’s next appointment, I look over to see her smiling. She is watching a video on her phone but then sees me watching her. She hands me her phone and tells me to press play.

The video is one of those feel good moments where a group of boys make accommodations to their game of basketball so that another boy in a wheel chair can participate. As I watch it, Jen smiles and then looks out the giant window in front of us.

There are people and cars moving about on this glumly day in Columbus. Those out there have no need for accommodations but those around us, that is not the case. The older gentleman down the hall talking to his son as they wait for their love one to return from radiation. And to our left, another older couple waiting quietly together. Jen is definitely one of the younger people here being treated.

Jennifer and I got home from her appt. in Columbus about an hour ago. It was a long day with lots of meetings.

Her first meeting was with PT. They got a baseline of where she is in her strength. This will help them understand what she looses through the process of transplant. After PT, we met with nutrition. Again a baseline of where she currently is, how much she is currently eating and what foods she is able to tolerate and how much weight loss she has had thus far.

We then met with her social worker, followed by her transplant doctor, followed by three different individuals who explained clincial trials she qualifies for. We learned Jennifer’s donor is from the USA and that we will be able to have anonymous contact with this individual post transplant and after a year both parties can identify themselves. We also learned her last bone marrow had no signs of leukemia, however since the last bone marrow biopsy will be more than five weeks ago by time of transplant, she will have another biopsy next week. And we learned a set date for transplant (as long as her biopsy comes back still in remission). Originally she was going next week for three days of IV outpatient treatment followed by admission. Because her donor was unable to meet that schedule, that has changed to IV outpatient treatment from March 18-20, with admission on the 21st and transplant on the 28th.

As we sit waiting for Jen’s next appointment, I look over to see her smiling. She is watching a video on her phone but then sees me watching her. She hands me her phone and tells me to press play.

The video is one of those feel good moments where a group of boys make accommodations to their game of basketball so that another boy in a wheel chair can participate. As I watch it, Jen smiles and then looks out the giant window in front of us.

There are people and cars moving about on this glumly day in Columbus. Those out there have no need for accommodations but those around us, that is not the case. The older gentleman down the hall talking to his son as they wait for their love one to return from radiation. And to our left, another older couple waiting quietly together. Jen is definitely one of the younger people here being treated.

We are simply enjoying this warmer weather! It allows us to get outdoors and enjoy the weather before going to back to hospital. Windows open and lots of fresh air coming in!

What are you doing on with your beautiful warm days this February?

It has been a busy couple days in Columbus. Yesterday Jen had an echo for her heart and a pulmonary function test. Today she had done transplant education, had blood work done and currently have a scan done for a clinical trial radiation treatment. If approved for the clinical trial, she will only have her bones radiated prior to transplant and not her entire body. This protects her organs from radiation and is safer in the long term.

Currently we have a pliminary date for admission and transplant for March 7 and March 14. This is pending the donor’s schedule and approval. Jen would receive seven days of radiation and chemo and transplant would happen the day after that is complete. Once transplant is done, they begin counting days. Day 6 we can expect her counts to be low and when begins being at most risk. Ironically if these dates hold, this would be Jen’s due date 29 years ago.

Time goes so fast when you want it to slow down. We are already done with a week of Jen’s three week til admission….Although admission technically will not happen until March 9 ( still tentatively ), she will need three days in a row of an iv treatment that is done prior to radiation to protect her body from the harmful rays. This is an outpatient treatment that tentatively will happen on March 6, 7, and 8.

Jen’s counts all still look good and her strength and appetite are returning. I don’t even think she took a nap today but did rest on the couch for much of the late afternoon. She also seems to be able to tolerate more foods in recent days.

Acute myeloid leukemia has been grouped into three categories…..favorable, intermediate, and unfavorable. Those who fall in the favorable category and some in the intermediate category are able to receive chemotherapy and be cured. Those however in unfavorable and some in the intermediate cannot be cured without a bone marrow transplant.

Jennifer has a translocation of the 10th and 11th chromosomes. This means cells on the 10th have swapped places with some of the cells on the 11th chromosome. Whenever the 11th chromosome is involved in a translocation, you are in the unfavorable category.