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. 

On day +27, I believed once again there was hope to finally be on our way. And then day +28 came. And although the prayers for quieted cough finally seem to been answered, low grade fevers, headaches, leg pains, and inability to keep food down changed our hopes for getting out of here.

Although the fevers never produced a temp over 100, it delayed jen getting platelets until late in the day. Finally by 8pm, she was able to get them. She also struggled to get a migraine under control which led her doctors to believe one of the meds she was getting was causing it. Once that med was stopped the headaches let up.  

Day 27 & 28, she received neupogen shots, a bone marrow stimulant with hopes to raise her white count. Today it appears the shots have helped as her white count is over 3 again and cough quieted.  However the medicine is most likely the reason she had leg pain so today she didn’t get the shot. Hopefully her white count holds and continues to grow.  

But also Jen got sick several times yesterday and once this morning.  Since the nausea meds seemed to work before and now aren’t working as well, concerns she is developing acute graft vs host disease. Tomorrow they are going to scope the stomach and biopsy to see if that is the reason. And because of this, it no longer seems Jen will get out of here by the end of the week.

Jen has slept well today, so the news of staying even longer doesn’t seem to have her upset.  But I’m starting to wonder if after this, another hurdle will appear. It’s exhausting.  I’m thankful her cough has improved but I’m beyond stresses otherwise.

We turn the lights off at nine with hopes to fall asleep early. Within a couple minutes, the door to room 1429 opens. It’s Nate, the PCA. He was checking in to see if you need anything. We answer with request for fresh cups of water. A couple more minutes pass, he returns with water.

Now 9:13 pm, lights back off. She coughs. Quiet. 9:18, more cough. Ring for nurse, but the speaker on the remote works poorly on both ends so the room door opens. 9:19. “What you need?” calls out Nate across the room. “Something for my cough,” she says in her hoarse voice. “What?” he says. “She needs something for her cough,” I repeat. Door closes.

9:25 Stacy the nurse appears with cough syrup. She steps to the computer, stares at it for a short time,  takes her hand scanner,  scans Jen’s arm band and walks back to computer. 9:28 medicine given. 930 nurse leaves.

Things are quiet for an hour. 10:32 Jen needs to use restroom. It was a lasix day.  Restroom is a thing on lasix days. Unplug Ivy (we named the IV pole), readjust the O2 cord to stretch across the room. 10:36. Bring O2 cord back around bed Plug Ivy back in. Cover Jen back up. 

10:45 Jen has a headache. Common at night for some reason. Call the nurse.  Again can’t be understood so someone opens door and ask to be repeated. 10:50 nurse appears again with meds, stands at computer, scans bracelet, meds given. Before she leaves, Nate appears. Vitals time. 11:01. Pulse, O2 levels,  temp, and BP done and recorded in computer. “”You need anything? ” I’m out of water this time. 11:12 Nate returns with water. Door closes.

2:03 Respiratory appears with a breathing treatment.  Computer, scan bracelet, treatment. 2:12 door closes. Awake, must use bathroom. It was a lasix day. Since we are all up, I decide I need to go to. But I need to take off my isolation gown, mask, wash hands. Walk down to bathroom. Return to put on gown, mask, and wash hands again. Cover Jen back up, plug Ivy back in. 2:24.

Cough. Sigh. Nurse call. Rinse and repeat.  2:45 lights off, door closed.

3:16 Vitals with Nate . 

3:52 Labs to check CBC. 

4:10 lights off. 4:22 cough. 4:32 lights off.

7am vitals. 7:30 shift change, new nurse introduced.  8:10 new nurse enters. Meds, scan, cough…I don’t know. I’m too tired to know.

8 :25 respiratory,  9 :10 doctors, 9 :20 breakfast, 9 :45 Nurse Practioner. 

Sometime now between 10am and 11….there will be more coughing, PT, a nurse insisting she walk, more bathroom, and someone delivering towels for a shower. 

35 days. Without more than 3 hours of uninterrupted sleep. How is she to get well like this I wonder. 

To pass time here at the hospital, I usually have multiple colors of yarn and go from one crochet project to another.  Over the last month, I have completed one blanket, several premie baby hats, and promise to work on the blanket I had started for Jessica before Christmas. I also have the audible app on my phone and if I can’t fall asleep or need to do something quietly while Jen is resting, I plug in some headphones and listen to a book.

Awhile back I had also downloaded the app ‘goodreads” and looked through a list of recommended books.  I came across a book called “Truly Madly Guilty.”  Up until last evening the book had just been another fictional story, without much to take from. Last evening, I finally got to the chapter in which you learned what happened “The Day of The Barbeque.”  Essentially one of the couples small child nearly drowns in a fountain in the backyard.  And in this chapter, I was drawn to the words as the author describes the mother of the small child as she looks on at her little one laying there so helpless. The words, described so elegantly how I felt the day I learned Jennifer had leukemia. I shall with you now.

“So this is how it happens. A part of her thought as she rocked and begged. This is what it feels like. You don’t change. There is no special protection when you cross that invisible line from your ordinary life to that parallel world where tragedy happens. It happens just like t his. You’re still exactly the same. Everything around you still smells, and looks, and feels exactly the same. ”

Special protection. You think it’s there.  You think there is no  way a tragedy, like your child having leukemia, can happen without some shield. But there is no shield. You cross into this parallel world, without warning. There is no change in the rest of the world. Just your world. Everything else still goes on smelling and looking the same.