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. 

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!

From Mom: Sorry for the delay. It has been a busy morning and finally getting chance to sit down and give some updates.

With the help of amazing doctors, nurses, family, friends, prayers, and hugs it appears we may start making the turn we need.
In your White Blood Cells ( I call WC or White Count) there is a number they call the ANC. This is the actual part of the cell that fights off infections. That number had to be over 500 before they would ever ever consider sending her home. Today it is at 700.

Now that doesn’t mean she is packing her bags. It does mean with that number up, she is in better position to fight off the infections. It also means her bone marrow is rebuilding itself.

She was very agitated this morning. Last night they put in a line to drain some water off. And it has done a great job thus far as fluids continue to come off. When these fluids come off, she will be able to move better and moving better will over all help her mood. She wants up! Which I am going to take as a good thing. She wants to go home. So with that to work with, we can push her to do things she may have been resisting before. She is fighting.

We should start to hear some results back today about the procedure she had yesterday and this will help them target the infections better. It may take a few days for complete cultures to come back but it begins to rule out things she no longer needs.

She is still fighting fevers but that means her body is fighting. Her Oxygen level has stayed well enough she hasn’t needed to be on a vent but just a flow of air…I think they said at 4 liters..if that means anything to some of you. Her heart rate, although higher at rest then they like, didn’t increase much when they sat her at the side of the bed and moved her into a chair. And when in the chair, it comes down from @ 135 to the low 120s. The high heart rate is her fighting the fevers and the water retention.

Matt joining me did wonders. I was able to sleep knowing there was an extra set of eyes and ears through the night. I am not sure if he is able to stay tonight but I do know he does need to go back tomorrow as Heather has to work, as does Randy so he will be with the dogs. Unless we have Dex go to someone’s house and say during a few hours of transition. Stupid dogs! But goodness we do love them.

I will keep you updated as I can. Remember no news, means good news and when things go down hill, I go to panic and start to reach out to others. Me no panic = things going better.

Thank you again! You all have been so amazing to help lift me, Jen, Randy, Jess, Matt, and Heather up. We couldn’t do it without you.

Love ya all!

I sit her in this dark room, listening to the sound of oxygen pushed through a tube. To the sounds of iv ticks, I didn’t know existed not so long ago. To the sound of Jennifer quietly whimpering in her sleep as she tries to breath.

The tiny tree glows in the corner of her room. I haven’t put the decorations back on because I fear I will angrily pull them off if they move her to another place in the hospital. But I let the light fill the room and refuse to unplug it even as we sleep.

I try to wrap my head around tonight why she must suffer like this. And why I must watch. Why I am apart from so many I love in this room the nurse says they try to make it feel and look like home. She doesn’t know what she is talking about. The nurses want me to not stand close by and attend to her every need but who are they kidding? What else would a mom do in a time like this?

I try to not scream when I hear or read someone complain about something to me now seems so trivial. Why can’t they see how blessed they are? I want to be blessed in this moment the same.

God forgive me for my doubt and anger. I am trying to trust. But I’m hurting like nothing I’ve ever known

Prayers Needed

Tuesday December 20 – day 21
Without going into a long drawn out explanation I’ll give a short summary.
1. Procedure to look in lungs found some infection they are treating as fungal phenomenon. This requires an strong antibotic that is hard on kidneys so watching that closely
2. Water retention is a big concern and they are trying to take it off without effecting her bp
3. If she isn’t able to maintain her breathing, she will be moved to icu with possible need to vent her.

If ever I needed prayers threw this hell, I need them now. ..I can’t tell you how scary this is. She has been irritated but still ok. Me, I’m all over the place.

Astronaut Training

Monday December 19 – Day 20
945 pm
Jen decided to give the cpap another try. She hasn’t liked wearing it and it has taken her awhile to trust it. Tonight she asked to try it again. She is so brave.

We compare the face mask to astronaut training. She doesn’t like the comparison. But as I explained, astronauts must train for the journeys that lie ahead.

If you have watched Big Bang Theory before, Howard Wallowits on the show was training to go to space. He was pretty whimpy. Jenn is no Wallowits!

Update from Dad

Update from Randy
Update time….well things can change on a dime here….after her fever broke about 5 ish this morning the day was pretty uneventful until about 3 when she was up going to the bathroom and got lightheaded and a little panicked, started coughing and threw up. This started a chain of events and a lot of attention from many nurses and docs that resulted in a lot of anxiety for Jenny. She had a chest xray and a chest ultra sound to make sure she did not take any material into her lungs. She was given some Demerol to calm her. Over the next several hours things calmed down and right now she is doing very well. The rash is starting to subside, which is a very positive development and that may spark a general rebound. The main concern right now is that she doesn’t develop pneumonia.

There is talk of icu to get more one on one care
but since she is doing better that is on hold.

Word From Jessica

Good morning from icy Columbus! Jenny’s fever broke around 5 a.m. This has been the common theme, so we will see if it stays away this time. She was able to sleep much more comfortably with Demerol and Tylenol every four hours. They also found a different mask for when she’s getting O2 so that seems to have helped.
Biggest prayer request is to pray for the rash to subside.
Hopefully more updates soon!

A Month In

Today we are a month in from Jen’s diagnosis. And although we won yesterday’s battle, there are many battles yet to fight.

Jen is running a higher fever today and it is being stubborn. So they have her packed in ice. Her shivering is beginning to calm which is good as she looked miserable.

Her rash is back again worse than before. It may be fever related but until they are sure they are stopping the clinical trial drug again. She just had a chest xray to make sure there is nothing there to be concerned about.

Days 14-21 are the hardest they tell us, and that surely seems to be true. Her WBC is rock bottom at a .2 and so fighting infections will take diligence and lots of antibiotics. And then after day 21 we should see those numbers start coming up. We are at day 16.

We talked more to the doctor about the future plans. Sometime in the weeks ahead, she will be prepared for a bone marrow transplant. At day 28, she will receive another biopsy to see if she has remained cancer free (another battle we are ready to fight). If she is, this is what they then label as remission. This will give green light to move forward to the next battle.

The transplant will require 100+ days of inpatient and outpatient treatment. She will need to live here in Columbus through all that. When talking to my brother Rick yesterday about all my fears about this, he reminded me to enjoy today’s blessings and trust in Him to provide for the days ahead. I need to hear that sometimes.

Please continue to pray for Jen. Your prayers I believe are giving her much strength. We are so impressed by this.