Chapter 1 – Feet |Cancer Is No Fairly Tale |

Three years ago, Jen had said she thought she should write a book…and call it “Cancer Is No Fairly Tale.” Her explanation was that whenever you watched a movie with someone who was battling cancer, rarely did the movie show all the battles you would face along the way. There would be tears, someone falling in love, sometimes someone died, but a sun that comes back out the next day and the story ends without all the the gruesome details of what battling cancer really is about. So while I only know the side of cancer from the point of view as her mom….I hope it gives you a window into the world Jen has faced for now over three years.

I start with her feet.

When the chemotherapy starts, we learned it’s job is to kill off the fast growing cells of cancer. Along with it, it takes other fast growing cells, like her hair, nails, the thin lining inside her mouth, and her skin. The feet is a place I will notice the skin fall off pretty easily. It flakes in big chunks. I notice the chunks of skin inside her socks, at the foot of her bed, on the floor next to where her slippers lay. And if she is sitting in a chair…the skin will be on the footrest. While the first several weeks, this may be minimal, by about week 6-8, it will become so apparent….it looks like someone took off a shoe after walking through a sandy beach.

This makes her feet, really soft… a babies. But also very delicate…not like the feet of most adults that have grown callus over time. It also makes her skin very thin.

Add to that her toe nails, they grow weaker, thinner and sharp, before growing so thin, they break off. Over weeks, especially after a second round of chemo, I notice a black line across each of her toe nails. It is where the nails stopped and started growing again.

And finally, her feet will most likely swell in those first weeks. This comes from all the fluids they push into her as they not only try to wash out the poison from the chemo but also as they give her body antibiotics as it fights numerous infections. After weeks in the hospital, when I put on her shoes for the first time….they won’t fit. No matter how much I loosen the laces, the feet are not going to fit into her shoes. Sometimes even the socks she had worn, no longer fit. And the ugly yellow socks the hospital provides…often need to be cut down to just above the heal…because if they aren’t, I can’t get the sock over her swollen foot and ankles.

It takes months before her feet look normal again. Before the swelling is gone, the flaky skin peals and new skin grows, and even longer before her toe nails no longer are thin with a black line growing out from the toe.

I hope all of this hasn’t scared you all from reading when I write more of “Cancer Is No Fairy Tale.” If I have, future post with that title you may wish to skip.

Happy Hump Day!

Jen and Andrew are playing today! He just loves her!

Jen will still be in Columbus when Andrew celebrates his second birthday, so they are getting in play time while they can.

Also, the organizers of Jen’s benefit wants to me to not only invite you to her benefit (pancake breakfast, quarter auction, and gun raffle) on April 19….they also are still looking for businesses and families to donate items for the quarter auction. You can contact Jessica Crawford Matt Honigford Andrea Nicole Schlueter or Kate Shuherk for more information.

Happy hump day!

Day +21 Home

Tuesday, Feb 18
Day +60 Chemo
Day +21 Home

Jennifer has been getting stronger….now able to walk without using her walker. While she can’t walk longer for periods more than a minute or so, she is feeling stable enough to leave the walker sit in the corner of the room. Because she has gotten to this point, she has been able to ‘graduate’ from home PT. She could benefit from physical therapy on location, but the risk of germs and illness is too much. So she is working on the exercises given to her on her own.

Jen also accomplished taking a shower and getting dressed on her own on Sunday. We hadn’t really discussed her trying this, I was not at home when she wanted to shower…so she decided to give it a try. Her dad was here if she had any emergent needs but she did ok. She used her grabber thingy (not sure the formal name of it) to help get dressed and accomplished this completing herself. Exhausted when done, but it is good to know she was able to do this herself.

I have been cooking like crazy the last couple days…getting lots of options in the freezer for Randy while we are gone next month.. and into April and May. The goal is for there to be options he can pull from freezer when he is working and has little time on his hands for cooking. So far he has meatloaf, beef stew, and shipwreck (a recipe his mom use to make). I have a couple more things to make but I am making a dent in it all

Jen decided to paint some today. …which is the first time in quite awhile. She is not done with it so all you get is a photo of the paint brushes she used.

Day +16 Home

Thursday, Feb 13
Day +55 Chemo
Day +16 Home

Jennifer ended up with three appointments today (instead of one). She had a scheduled appointment with a cardiologist today, but the clinic wanted to check her kidney function as a follow up from Tuesday because they were off some. The numbers improved but still a little off. Her liver numbers are improving also.

The cardiologist appointment went well. She was suppose to see him in December but was in hospital so it was rescheduled. Nothing too interesting to report on this front. The cardiologist at the hospital had already determined her tachycardia was most likely caused by the leukemia having returned. Jen will have an echo cardiogram in a couple weeks to check heart function since she had the strong chemo.

Finally, magic was worked by the hematology clinic and the dental clinic at OSU and this morning we received a call about having a consultation for her cracked wisdom tooth. So after her cardiologist appointment, we went to the dental clinic. And before we knew it, they had Jen in the chair and pulled the two wisdom teeth. And instead of a $1500-$2500 bill, it was under $350. That relieved so much stress!

The next 2 1/2 weeks, unless something new is proposed to us….we are on a break from the big city. That means no long days in the car back and forth…which is music to Jen’s ears.

We did get this in the mail today. It included a schedule of her work up for her transplant. So March 2nd & 3rd she has two very long days of appointments. Until then, we are going to enjoy being home and work on getting Jen stronger.

Day +15 Home

Wednesday, Feb 12
Day +54 Chemo
Day +15 Home

Jen has two appointments in Columbus tomorrow morning We left tonight to get ahead of the weather. As you can see, we didn’t leave soon enough. But we made it.

Tomorrow she is seeing a cardiologist to check her heart function. If heart is strong enough, the plan is for a stronger chemo prior to transplant. Otherwise a less strong chemo is needed

She also is needing to check her kidney numbers as they were off some on Tues… possibly because of dehydration. She didn’t feel great Tuesday (headache and pain) which dehydration can explain that.

We started today in a panic about cost of having two wisdom teeth extracted. However, we have such a wonderful tribe of friends and options for having this done is growing. The sticker shock of $2500 was enough to make Jen cry. ..but let Go, let God has once again been true to form.

Day +14 Home

Tuesday, Feb 11
Day +53 Chemo
Day +14 Home

As many of you saw, Jen had an appointment today at the clinic . And the news ….that she is in REMISSION! Because the chemos she has received thus far are so strong, reaching remission with MEC (the chemo she just received) was important. Her body can’t handle much more.
Now it is important to move quickly so that the cancer doesn’t have much time to come back. The registry was looked over and there is a quality 12/12 match . There was several 9/10 matches also but explained the components needed for this to work… there are only a couple options.

The first is the 12/12 on the registry. That is where they will start with health test and if the person is available asap. If they do not get past the health test or if not available very soon, they go to the next option which is a sibling.

Jess and Matt are Haplo matches…which means they only have 1/2 the same genetics. A sibling can be 1/4 to a full match. Fortunately they have the part Jen is needing the 9/10 matches don’t have. Matt is where they plan to look if the 12/12 match falls through. This is because young men have the strongest bone marrow.

The strange genetics that was messed up in her, was corrected with the chemo. …which was necessary to move forward. If her heart function is strong enough, she will get a strong chemo the week prior to transplant. If her heart function has deteriorated, then a less strong chemo will be given.

Jen also needs to have her wisdom teeth extracted as one has a crack in it (probably caused by chemo) so there is not a source of infection once the process is started. We are looking to have this done in the next 5-10 days …as it needs to heal also.

So we will make another trip to Columbus on Thursday to check her heart functions. And then in the next couple weeks, her work up for transplant.

Also, because she has such rare things happening with her AML (like the tumor on her voice box and still being donor cell) I have asked about a second opinion from MD ANDERSON in Houston. Her doctor at the James is looking to see if possible to teleconference with them…so that we don’t need to actually take Jen to Houston at this time. I believe unless necessary, the trip would be hard on her and expose her to a lot of extra germs and viruses. However, if they have options the James doesn’t have, then we would seek traveling to Houston. MD Anderson is the very best in fighting AML.

Also we want to thank you! Your prayers have been heard and my sweet girl is in remission!!!! Praise God! Thank you Jesus!