(Image of cupcakes I baked for the nurses)

The last time I saw Jen was on Friday.  She has much improved since then. She moves far better and is more alert. She however is having a persistent nose bleed since I’ve gotten here. Because she has platelets only around 50, this is expected with the blood thinners. She is receiving a transfusion tonight so the nose bleeds should slow down.

Her Nurse Practioner  Rosalyn also came in with some awesome news. Jennifer is 100% donor cells.  This means she has fully engrafted. So when we do blood counts,  this is completely from her donor at this point. This is big! 

Also the talk is tomorrow she will be leaving the hospital.  It sounds like she will be too strong to go to the rehabilitation center so it will be back to Hotel Home on Olentangy (Staybridge ). 

And finally  (this is a repeat but I’m determined ), 
I am  working on a small project and need your help. Jen is getting stronger each day, and I really believe your prayers have helped. I want her to know who you all are and how following her story has impacted you.

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I’m working on a small project and need your help. Jen is getting stronger each day, and I really believe your prayers have helped. I want her to know who you all are and how following her story has impacted you.

 If you could make a Facebook  or Instagram post with the hashtag ( # ) #BecauseOfJen and then finish the statement.  

Example – #BecauseOfJen I have been noticing my blessings each day. 

I’m going to get all of these saved in a book. Feel free to include a picture in your post that I can incorporate.  Thanks! 

Ask and you shall receive, right? Here is the current list of where we need some assistance. 

1.  We are still searching for 3 bands who would like to compete in a battle at Jen’s Welcome Home Party on July 22. 

2. Anyone who would maybe like to sell Disney Raffle tickets  (especially around Ottoville and Kalida). We just aren’t around here enough to really tackle this. We have prizes for those who sell the most.

3. Addresses  or email address of people interested in attending Jen’s Welcome Home Party on July 22. 

You can reach me via fb messenger or email me at rallytogetherwithjen@gmail.com 

Thanks in advance!

I’m sitting here with Jen waiting on doctors to come in. I had went to hotel to sleep last night and did some laundry before coming up. Jen texted me at 2am, telling me they did a chest ct a little after 9pm. 

Unfortunately,  the scan shows a tiny clot in her lung. This is reason why her vitals have been all over the place and why she has been short of breath.  

I am not sure what the plan is as her platelets are low so blood thinners are not an option. So we sit and wait to see. More later. 
Update 10:31 a.m.

The plan is tricky.

Her platelets are under 50 so blood thinners aren’t possible. So they can give her platelets to keep it there however…the more u get …the less effective but also a lot of fluid.

She is on a drug for a virus that brings her platelet counts down….so consider taking her off it.  

They also are going to scan her legs to see if the clots came from there and if there are more…they will need to put in a filter to keep more from traveling. 

Someone 

Tell me when

Life will be normal 

Again.
Someone 

Show me please

Life without this

Disease.
Someday

Is it is even possible 

Because right now it seems so

Incomprehensible.
Somehow

We can’t let cancer win

But I’m not sure where to 

Begin.
I’m tired

And ready for 

Life to get back to the way it was

Before.

As many of you saw yesterday,  we had a live facebook event in which Jennifer was able to leave the hospital after  five weeks and four days of being here. As we drove away, she told me it was a bit surreal. She was happy but frightened at the same time.

I would like to tell you our first evening away from the James was awesome.  It wasnt. I am so thankful however to have had Jen’s sister Jess at my side through those 24 hours. Jen of course was exhausted by the time we got to our new but temporary home at the Staybridge Hotel on Olentangy.  But she wasn’t able to get comfortable no matter where she tried to lay down or sit. 

We finally laid down about midnight. Jen immediately started her whimpering she does now when falling alseep. The distressed sounds continued for a couple hours. Soon after, she woke with nausea and diarrhea.  It was 530 before she was back to sleep and quiet. At 9am, she ate a little. And all seemed ok for an hour or so. But by 11am, she was again uncomfortable and complaining of being short of breath. We tried a breathing treatment but no improvement.  Then she complained of more nausea.  We decided to call the BMT. The nurse had us give her a pulse, BP, an respirations.  All were a bit high and so the decision was to bring Jen back to the hospital.

And so, day + 33 is not quite the day we hoped. We wait and see what the doctors want to try from here. 

I thought the good news that came back from Jen’s stomach scope would make her shine her big smile. But she has set her sites on getting released from hospital,  the news there is no sign of GVHD in her stomach didn’t get the reaction I thought it would.  

Although the docs believe she has improved greatly,  one test came back today with some elevaded numbers again. Once again concerns for something called CMV (which I am not all that knowledgeable about) lurk. Because of this, Jen will need to go to outpatient on a drug that is quite pricy and needs insurance approval. And it being the weekend, that approval may not come until Monday. 

Big crocodile tears streamed as she shared her disapointment in having to stay possibly the weekend. Although Monday isn’t that far away, her release has been pushed back too many times at this point. Her doctors are working hard with her insurance to get the approval tomorrow but no promises can be made. 

So I armed myself with two consolation  prizes. First I found a wheel chair and for the next hour, we strolled outside the hospital campus. She tired so quickly however and I had to bring her back. Secondly, I have requested her to get a pass tomorrow to leave the hospital.  Although she may only have the ability to hang out at the hotel, anything is better than being in this hospital room. Hopefully if she won’t be leaving this weekend, they agree to let her take a few hours away from here.

I end with an image of her white count score. Now no longer low and high enough to fight off infections. 

Because Jennifer had gotten sick several times on day 28 and once day 29, they scoped her stomach this morning and took some biopsies.  They are looking to see if she is developing GVHD  (Graft vs host disease ). They said she had some area that looked red but nothing acute.

The strange thing is, she requested pizza last night. Pizza, of all things. And the ate 2 1/2 pieces and kept it down. Tonight, chicken tenders from Cains. I’m waiting for the shoe to drop. Hoping it doesn’t but it seems to be the pattern.

Her cough has improved greatly these last couple days. It is still present but not keeping her awake like it was. She continues to get breathing treatments and is on 2 liters of O2. This has been reduced from four liters this morning. 

I close this asking for you to pray for another patient here at the James. Ralph is on the BMT floor and is a week behind Jen in transplant.  He has been struggling and his wife, Karen has been so worried about him.  They have a young son and I know she worries about raising Ray without his dad. Please keep Ralph, Karen, and Ray in your prayers tonight.

  

The word “leukemia” makes me sick to my stomach. It’s such a long painful process from diagnosis to cure. And cure, often not reached. When we  think of cancer, we think of it effecting an organ like lungs or colon or a tissue like our breast. A tumor that can be removed or shrunk. But blood cancer,  there is no tumor. Just cancer cells taking over the blood cells in you. 

Those blood cells keep you healthy, free of infections. They also keep you from bleeding by clumping vessel injuries. And they carry much needed oxygen from your lungs to body tissues. You wipe it all out, you risk so much. But to cure the cancer, you must wipe out it all and risk death.

I sometimes can’t believe I know all this about leukemia.  I wish had no reason to know it. But I here I am, educating myself about something I hate. 

Through out this long stay, the faces of other patients and their families have become familiar.  And we watch each other come and go. We watch as one gets well. We watch as one does not. We see the smiles and the tears on all the faces. When a door is left open, we peak inside to hope to see our new friends up and pushing forward. We often instead see them laying in bed struggling to get through the day.

Why? It isn’t right. It just isnt. This path is horrific and long. And each day you wake, you hope today is the day, your love one turns the corner and starts improving. 

 Damn you leukemia!  Don’t take another. Leave my daughter and all the rest who suffer alone. Let them find the strength to beat you. And someday, we will read about how you were irradicated.  

We have developed a routine and so each night, I cover her with a blanket. We have named each blanket at this point and we start with Pinky. Pinky is a pink jersey blanket her sister Jessica bought her years ago. It has a BGSU logo on it, Jessica’s alma mater. If she is cold I also cover her with Big Blue, a heavy blue blanket I crocheted her at Christmas.  In December, there was also Socks, a holiday blanket with stockings on it.  It has since been put away. 

Then after she is covered, I kiss the top of her warm soft bald head. My lips never touch her skin however, as I have a mask on to protect her from me. My daughter needs  protected  from me. The thought she needs protected from me, her mother, makes me a bit sad, even after all this time. I tell her I love her. And in her weak, hoarse voice she whispers it back.

Before I’m even laid down, she starts making whimpering sounds. She has that quickly fallen asleep. Her whimpers sound distressed tonight, so I ask her if she is in pain. “No mom,” she replies. “Your crying in your sleep,” I tell her. She tells me she knows but can’t seem to make it stop. I lay down my head and the whimpers start again.

I take my pillow and move it to the other end of the pulled out chair that I sleep on. This way I can reach her, as she has been sleeping in the recliner for the last couple weeks because she coughs when she sleeps in the bed. I take my cell phone and open up the Pandora app, and change the channel to “Jim Brickman Piano.” I turn up the volume and lay it on the window sill. The music fills the room. 

I roll to my side and reach my arm beyond the pulled out chair I lie on, and place my hand on her. I pull back the blanket, tonight just Pinky and I find her foot. She has a pair of those yellow slip proof socks on but she can feel my hand there. Her whimpers slowly calm. And we both fall alseep.