Thursday, July 8, 2010

the last mile.

Did you miss me???  I just realized it's been a whole week!  Shame on me... so much to share.

This weekend while you were boating, barbecuing, and enjoying the sunshine, I took a little vacation of my own!  On Thursday night, my mother-in-law arrived to spend the night with Josh so that I could go to a nearby slumber party with my sorority sisters.  I slept like a rock in the queen bed I had all to myself.  When I woke up, I talked to my Mom on the phone who made me promise to sit in the sun for at least an hour before heading back to the hospital.  Oddly enough, this was a tough promise to fill as I am SO used to being next to Josh at all times.  I followed my mother's orders and spent a few hours sipping on Arnold Palmers and playing Phase 10 (a card game).  I even got a little color!  I really needed that... thanks Mom!

In the sun with Jackie!

On my way back to the hospital, I kept thinking about how wonderful it would be to go home.  To have all the sun I want.  Then I realized that Josh has never had a break.  He has not had a night off.  He has not had a drive in the sunshine.  He has not been out of the confines of the hospital for four+ weeks now.  Wow, my heart just broke for him.  I decided that we needed a nice weekend to ourselves.  We needed a date or multiple dates!  We told company to stay away on Friday, Saturday, or Sunday!  It was wonderful!  We watched movies, went on walks, and Josh finally made it outside in the courtyard again!


Our first trip back outside!

Admiring the scenery.

Overall, this past week has reminded me of the last mile before the finish line.  You're tired, exhausted, full of anticipation, and maybe even a little frustrated... but the end is near.  The clapping and the cheering of the crowds are exactly what you need to keep going - to push through to the end.

From last Tuesday to today, Josh's blood counts have bounced around.  The most important cells, his "ninja fighting" white blood cells, were taking their sweet time.  The doctors decided to double his dose of cell boosting medicine to kick them into gear.  They have gone from 0.1 to 0.4 in the past week.  0.5 is the amount needed to fight bacteria, a very important milestone (1.0 fights viruses and fungus).  We are moving in the right direction.

Another top story: I have been a "nurse in training" this past week!  The cell-boosting medication they doubled just happens to come in the form of a shot.  Josh also requires insulin shots now due to higher blood sugar (a side effect of some of his medications).  Although I still freak out like a baby when I get a shot, I am surprisingly great at poking my husband!  I have also been cleaning out Josh's lines/port which I swore I would never do when we first arrived here.

Earlier tonight: Our nurse left me alone with Josh and a needle!

This weekend, the doctors told us that they would like to wean Josh off of any supplementary nutrition.  This meant that Josh would have to more than double his calorie intake in a matter of days.  It was NOT very fun.  He had little appetite, a hard time swallowing due to constant "cotton" mouth, and an upset stomach as it  was not used to processing normal amounts of food anymore.  He was put on a very limited diet of bland food which made it even harder to find things that sounded good.  But he met their goal and is eating completely on his own now.  Tonight he had a burger and fries!!  What a difference a few days has made!

Josh went from walking a room length, to a hall length, to a lap around the floor.  All of his walking he did with the assistance of a wheel chair.  He would lean on the back for extra support, then sit down when tired so I could push him back to our room.  Now he is walking much longer distances without leaning on the wheel chair!  It took a TON of coaxing, prodding, and begging but it all paid off.  I got off the elevator yesterday and saw Josh walking towards me by his own choice!  I almost died of shock, but instead I gave him a HUGE hug.

Finally, this week Josh's kidneys went back to normal again.  No further dialysis is needed, so the docs were able to remove his dialysis port.  This left Josh far more comfortable!


Josh's dialysis port (white tube at top)

Nurse cleaning the port for the last time before surgery!

To summarize... these are our blessings this week:
-Josh's ANC (super fighters) went from 0.1 to 0.4
-Josh is eating a normal amount of calories on a normal diet
-Josh has made major strides in walking and exercise
-Kidneys are totally in the clear

I wish I could end the blog here, but unfortunately there is more to this week than just good news.  Remember the race you're running??  Now you're getting closer and closer to the finish line, but all of a sudden you get a retched cramp in your leg.  You're not sure you can keep going.

After being told for the past week that we were very likely headed home this weekend, we found out today that Joshua's skin tested positive for GVHD (graft versus host disease).  Josh's new cells are more or less attacking his skin, causing it to welt, itch, and peel.  The GVHD is currently at a stage 2 out of 4.  They boosted Josh's steroids today to help, but they will be doing a series of procedures to try to separate and clean the GVHD "attacking" cells from the friendly cells. The main objective is to prevent the GVHD from getting into the liver or digestive system, which can cause major complications and risk.  Both will be monitored closely.  The liver numbers have gradually gotten worse over the past week, with a slightly better number today.  Digestive track seems okay.

Josh is obviously bummed - he wants out so bad.  He is becoming a little less bubbly, a little less talkative, and often prefers to have the lights off in our room.  Luckily he has plenty of loved ones to boost his spirits high and kick him in the butt when needed.  I saw a musician walking down the hall today and I asked her to stop by.  She played her guitar and sang a little Johnny Cash!  Grandma Mabie, Mom, Josh, and I all sang along.  He had a huge smile on his face!  Therefore, everyone had smiles on their faces!


the uplifting guitar

Josh's lesson on the healing qualities of music!

This is yet another challenge for us to conquer.  More time here, more time out of work, more time away from our dog.  Please continue to pray with us.  We pray that God will heal Joshua and send him home at the right time.  We pray that Josh will continue to have strength and positivity to push through to the finish line.

6 comments:

  1. Hi Heidi - we will be praying that the attacking cells leave the friendly cells and pass right by the liver on their way out of his body! God bless you both and we will also pray for Josh's spirit to be lifted.

    Judy

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  2. So many great things are happening - continue to focus on the positive while we all pray for those that are not so positive! We love you!!!

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  3. One step at a time....
    One smile daily....

    You "will" do it. Through God all things are possible.

    Just smile..

    Wen

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  4. Hi my loves!! Unfortunately there are always ups with the downs but I don't know any two other people that are more capable of overcoming their obtacles. I love you both and miss you like mad!!

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  5. I laughed out loud when you said that you are still freaked out by needles, yet with Josh you have no problem poking him...lol. It makes me think of all the times I went with you to the doctor and had to literally hold your hand and calm you down like a two year just to get a basic flu shot. too funny.

    You two have jumped over many hurdles, there's just a few taller ones this time, but you'll make it over, especially with Josh's long legs. :) Hang in there, we're all cheering you on, and CANNOT WAIT for when we can all celebrate with you both!

    Love you both and miss you like CrAzY!!!!

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  6. This is your neighbor at 332 Adolph (Erin and Eric) We are glad that Josh is "home" and are sending good vibes your way. Eric is home for the summer and I am too- we would love to help in any way we can. We have tons of time to steralize the house, only 2 houses away!!! Let us know- whatever we can do. Please! 443-8417

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