Oh how 24 hours makes a difference.  Although Jennifer is still uncertain there are improvements, me, the docs, and nurses can see them.  

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As we approach Easter weekend, we know we will be spending the Holy Day here in the hospital.  We had hoped for a possibility of being out by Sunday but knew it would need a perfect recovery.  It has not been as we hoped. 

There is good news and I think best to start with that. I don’t want to under emphasize how important it is. When you have a bone marrow transplant,  the key to it working is having the marrow engraft. You know this is happening when the counts start to rebuild itself. Jen’s white count has grown from .1 at the beginning of the week, to .81 today. But even more important, the ANC or neutrafills (part of the white cells) has grown over 500. In order for Jen to be released and to fight off infections, this is important.  So engraftment is beginning to take place.

Also Jen’s soduim that had dipped dangerously low are almost back to normal. However this dip has caused Jen some delirleum.  Of all the things we have to deal with this hospital stay, for me this has been the hardest.  Over the last several days, there has been some improvement but Jen continues to hallucinate, especially when at the edge of falling asleep and is iratible. Today she does seem more cognitive, which gives me hope her brain will restore itself in time.

Also Jen’s cough has been a problem for much too long. Today they think her lungs sound crackly so chest xray has been ordered. If there is fluid there, they will start lasix to pull that fluid off and hopefully get her lungs 100%. We are still waiting on that chest xray result. 

Jen also will get a transfusion of red platelets  (hemoglobin ) today. With her being short of breath,  I’m hoping this helps that improve also. 

We also are trying to get the nausea under control and Jen eating again. She hasn’t eaten much in a good two weeks and she needs the protein in her.  

Doctor is hopeful to have her strong enough to move to outpatient by mid next week. She has some work to get there bUT with her engraftment starting to occur, we are hopeful.  

Jennifer had a new central line put in this morning. We are happy that is finally taken care of. 

Although Jen’s soduim levels continue to improve,  the delirleum remains. Head ct shows brain is ok…so we just have to wait for the delirleum to fix itself. She knows who she is. Where she is, her birthday, and all that. She just can’t tell what is reality and what isn’t. She also is very irritable.  It is nearly as difficult these days as it was in December when she had pneumonia but for different reasons. 

Her vitals are good and wc is growing slowly with her ANC scores now high enough to be released from hospital however the delirleum will prevent that from happening. We hope she remembers little of this.

I was hoping to post this morning how big of a jump Jennifer ‘s counts made but that is not the case . They haven’t budged.  Also her sodium levels had increased from 120 to 125 but haven’t increased from there. Normal is 135-145. She still has some confusion and is cranky from limited amounts of fluids she is permitted. 

They also will be doing a chest xray as she sounds crackly on the one side. And her coughing continues.

I spent the evening in a nearby hotel where I slept for over 12 hours. I’m so thankful Randy has come down to join me so that was possible. 

Hopefully later today I have better news. Keep the prayers coming. 

I find when Jen gets most fatigued, I worry. Today, Jen’s cough is persistent.  And because of this, she is miserable.  Her eyes look tired, with dark circles and,  sunken.  And all I can do is sit here wishing I could make it go away.

I woke up with a plan. I was going to run to Target, get a few things, and come back with renewed energy and get Jen outside on the patio on the 14th floor to enjoy some of this beautiful sunshine . I thought something other than this nasty dry hospital air may help her cough. And if we repeated it a couple days in a row, the cough would finally subside. 

But a couple things stopped that plan. First, I opened my eyes this morning at shift change to see, Tina, the one nuse I really don’t like caring for Jen. Nurse Tina is a busy body, jolting about the room like a nervous mouse. Half the time, she has to retrace her steps because she forgot what it was she was doing. But this is only half my problem with Nurse Tina. Not only does she seem a bit ADHD, she also comes in the room, maybe even in the hospital each day with her own agenda. She knows what needs done, makes a list of those things and refuses to stray away from that list no matter what.

Well this doesn’t work when you haven’t even talked to your patient yet. She is so dead set on doing things as she has planned, she pays very ltitle attention to Jen’s needs. Even something as simple as getting a glass of water, can throw Nurse Tina off,  so she chooses to ignore the request.

So Nurse Tina was the first obstacle in having a great day. But I decided to move forward and off to target I went. I then get a text from Jen  that her coughing had caused her to vomit.  I didn’t get much more than that from her until I came back.

Nurse Tina had been insisting Jen take her pills. Yesterday,  we found taking pills during a coughing fit, will result in the pills coming back up. And that is exactly what happened. Every last one ended up not making it to her stomach. 

So you would  think some level of inspection would be done to find Jen needed her meds again. But the vomit episode had already thrown off Nurse Tina’s day, she surely doesn’t have time to reorder her meds. 

Well in those meds were things that helped quiet Jen’s cough. Given 12 hours apart, Nurse Tina insist she may have gotten some in her (although Jen sees the entire pill intact in her vomit). This leads to an entire day of coughing,  exhaustion, and no trip outdoors. 

I will be requesting Nurse Tina to not return. 

There are times I look back on my life and believe there was such grow periods. Obviously at 5 foot nothing,  I don’t mean in physical height but in maturity and personal growth. The first time I felt this way, was during my pregnancy and birth of our oldest, Jessica. 

I was eighteen,  fresh out of high school when I discovered I was pregnant.  I quickly made the decision to leave dreams of college behind, marry my high school sweetheart, and move to a place very forgein to me, a city. Now although I was now going to be responsible for this young person, and I learned how much you could love a child, I now look back and think, I had a long way to go.

The next time I felt the rush of wisdom came when I was in my late twenties to early thirties.  I have often told my children,  it was in these years I loved life beyond compare. Maybe it is why to this day, I tell people I turn 29 on my birthday each year. In these years, I set out to find what I felt I was to spend my working years doing.  I went to college, with three babies in tow, and got my bachelor’s in education.  I learned a great deal, not only about education and teaching,  but also about myself once again. I found myself less dependent on others, more confident in myself, and actually much smarter and more capable than I had previous. I learned to not hate who I was and I found my voice in not allowing myself to be bullied by others. And although I’m still not 100%, 100% of the time, it was a start of a stronger self.  

And so over the last twenty years, I kept coming back to the growth that happened in those years I was in college. I didn’t go on to spend my career in a classroom like I had thought I would, but the growth during those years would help me be a better wife, mother, and photographer. 

Fast forward twenty years to late 2016. Mother of three adult children, running my own business, and married for 31 years. So much to reflect upon and draw conclusions from. But I stopped short of what today I consider the biggest growth period of my life yet.  

I would give it all back in a second. Not just this last eye opening period, but also my college degree, my business, and even that more confident woman with a voice, to have my daughter not suffer from cancer.  But I believe God knew it would take something this big for me to see I needed to change. 

I feel tremendous guilt, if the reason she must endure this is because God felt I needed this journey.  But maybe that is a bit narcissistic.  Maybe it isn’t about me, as much as I think. Either way, change in me has happened. 
I previous would have described myself as a perpetual complainer. No one day can I say I have lived life without finding  fault in so much.  In people, traffic,  machines! They all failed me. And I spent loads of time, precious time, seeing failure and disapointment.  

Today, although I must recognize I am human, and will not always be perfect,  I see life much clearer. I see evidence of miracles,  blessings at my feet, and so much to live for. I am humbled beyond words to have my eyes opened up to it. 

But my journey would not be complete, if I didn’t help others find their way to this knowledge without such pain. Stop. Look around you. See a cloud, not as dark rain, but as a gift. The gift and blessing is there. Open your eyes and see it. Before you waste your life complaining about everything.  

It took a birth, a college education,  and my child to have cancer for me to grow. I’m not an easy case, this is obvious.  Maybe I get it now. Or maybe next year or twenty years from now, I’ll look back and think ‘wow, I get it now.’ 

Hello from Ottoville again today. Although I’m feeling much better than yesterday, I’m not well enough to return to Columbus.

We have decided Jennifer is a superstar. She is still doing very well with no fevers and vitals strong. She is in need of another platelet transfusion with her numbers falling into 6000. (Anything 10k or under, she gets one ). Her WC is still very low but hemoglobin has remained steady. Later today she is to have an echo cardiogram to see how her heart has faired through radiation and chemo. Other than that a quiet day with her dad is the plan.

Hello from Ottoville. …not where I had planned to be, however I am fighting a sinus infection and cannot be on the BMT floor or near Jen right now. It is nice to be relaxing at home, but not really where I want to be. But I don’t have a choice as the best thing for Jen is for me to be here.

Jessica stayed Saturday night while I stayed in a close by hotel. When I woke up Sunday feeling worse, we called in Matt to come stay Sunday night. This afternoon Randy went down to switch with Matt. And now we wait to see how quickly I get well and can return.