Nash Family Blog

What Day Is This Again?

I think we are now officially Day +54.  Pretty cool, huh?

Let's see...Leah had a great birthday! My baby is now 8 years old and boy has time flown by.  Here's a pic of her with her Sponge Bob cake given to her by the Child Life department at CCH:

They also gave her a gift...

That's an American Girl Doll!  What a sweet treat that was!

She also received so many packages and cards via mail and well wishes on facebook that it really made it a special day for her.  So thank you to all of you who helped make it wonderful!

Our last clinic appointment was on Friday and Dr. Jodele is very happy with her progress!  We have cut back her IV fluids as well as her steroid dose (used to help tame Mae's cells).  We go back Tuesday and it appears that we might drop IV fluids altogether as well as switch her Cyclosporine (also an anti-GVH drug) from IV to oral!  That would mean that while I'd still need to flush her lines twice a day, I'd be done hooking up and running meds!  We are also starting to wean back on the dosages of her meds as well.  All good news!  

This weekend my husband drove up with the boys and it was a special time....the FIRST TIME WE'VE ALL BEEN TOGETHER SINCE THANKSGIVING!!!!!  It was wonderful, and loud, and crazy, and blessed.  I loved it.  The boys and daddy are back home now - Mae decided to stay on with us for another week.  I sure do miss them.  Dr. Jodele is hopeful that we will be home by the end of February...another bit of good news.

So here are some random pictures from the weekend.  Enjoy! - Sarah

 

Can You Believe We Are Day +50?

Things have been good.  Really good.

We are all settled in here at our apartment in Cincinnati - our Half Way House - our Home Away from Home - for the next 4-8 weeks.  Leah has been happy and relaxed.  Mae is talking our legs off and filling this place with her energy and enthusiasm.  We've worked puzzles, done crafts, played dolls, watched movies...just had a good time. 

I am finally starting to get a feel for which oral meds are which and how often they are given.  Also, the pumps and IV meds are becoming familiar and comfortable with twice a day hook ups.

Leah's appetite seems to grow by the day.  She is eating almost everything now, from cereal to tacos and pickles to steak, and drinks a bit more each day.  Her labs today showed her renal panel (kidney function, etc.) to be a bit elevated so they are having me push her to drink more instead of increasing her overnight IV hydration. We'll recheck it on Friday.  Otherwise her counts are great.

Today's labs:

White Cells: 6.5

Platelets: 55 (they've been fluctuating in the 45-65 range)

Hemoglobin: 12.1

ANC: 5470

Numbers look great!  She continues to not show any big signs of GVH which is good.  

I'm having a hard time wrapping my head around this whole post transplant outpatient thing right now.  It's not like it's been in the past.  Previously during treatment when her counts were low we went on neutropenic diet and kept in the house.  When counts were up we were free to have a normal life.  Not so with bone marrow transplant.  On a deeper cellular level her immune system is still practically non existent.  It's going to be months before they will even test to see how it is working and developing.

Anything that kicks up mold or bacteria or dust is dangerous to her.  So she can't be in a room that's been vacuumed for at least an hour.  She shouldn't be around animals either.  I'm to wipe down her bathroom (preferrably she'll use one that isn't used much by anyone else) with bleach wipes daily.  Avoid all sick people and anyone exposed to someone sick.  Her skin is extra sensitive so no swimming (the chlorine can irritate her skin, causing her cells to rush to the irritated area to heal it, causing them to get excited, causing a GVH flare up) and watch sun exposure (he actually said to wear long sleeves in the sun - yeah that's happening).   As time goes on things will get better, but it's going to take lots of time.  

All that craziness aside, she is doing great.  She's tolerating her oral meds well, no nausea, and currently is in there playing with Mae.  Her activity level is up and while she is still very weak she is getting stronger every day.  The normal routine of laundry and cleaning and baths and cooking has been theraputic for us all even in our home away from home.

Thank you to everyone who sent her cards or gifts or Birthday wishes on Monday.  She had a quick clinic visit that day and the nurses surprised her with a cake and gift and song.  Then we spent the rest of the day enjoying ourselves OUTSIDE the hospital!

Continue to pray for her protection and healing as we move on with outpatient care.  Pray for our strength as we continue to be a separated family most of the time and as Debbie and Robert manage our household/take care of the kids while I'm here and Adam is at work during the day.  It has been great to be out and to spend the week with Mae and Leah and I cannot wait to see my boys!  I think I may hug them and never let them go.  

So, I'm off to prep her IV meds and then settle in with the girls and watch American Idol.  Then they'll be off to bed and I'll be off to have a glass of Shiraz and a bite of dark chocolate :-) - Sarah

Happy 8th Birthday Leah !!!

You are brave and strong.  In your few years you have shown more grace and courage than I could have in a lifetime.  You are my first born and one of the greatest joys of my life.  God grant you many many years Leah!  

I love you - Mama

Day +47: Discharged!

I'll start by apologizing for the delay on this post.  It has been an extremely busy day.

We were discharged this morning about 8:15am!!!!  We are beyond thankful for this blessing and are quickly settling into our new routine here at the apartment.  Adam and Mae were there to pick us up, Mae clapping in the back seat as Leah got buckled in and we were off - on our way to our new home (Our Half Way House as one of her nurses called it).  

It didn't take long for the girls to close themselves up in the bedroom and commence giggling and chatting and looking at all of Leah's goodies that people have sent her.  Here is their first meal together:

Home health arrived at 9am to watch me hook up Leah's Cyclosporine and go over all sorts of "what if" secenarios, review her meds again, etc.  Then Adam made the needed grocery run while I unpacked all of our stuff and organized all the med supplies.  

It's been an absoutely wonderful day.  Leah has followed me up and down the hall as I do laundry smiling and doing her little purr.  I asked her why she was so happy and she said that she was just glad to be home.  I don't think she's quit grinning since she got here!

So blessings abound tonight.  I'm going to snuggle up to my husband tonight and enjoy sleeping in a real bed and then wake in a home to my girls in the morning.  Have a wonderful night...I know we will!

Day +46: Slight Delay

We did not get discharged today :-(  However, we are shooting for very early tomorrow :-)

It basically comes down to the fact that we are monitoring a minor blood pressure issue and we should be good to go in the morning.  Leah (and all of us) were more than a little disappointed, but are looking forward to morning arriving!

Mae has travelled up with daddy to help us get settled in at the apartment and she will be staying to visit with Leah and I for the week.  

That's the news.  Hopefully the next time I post it will be from the apartment!

Day +44: Gettin' Out!

The time has come....it's finally here....we are scheduled to be discharged....SATURDAY!  As in the day after tomorrow! 

News from rounds this morning:

Leah continues to look fabulous (those were their words!).  She's doing great, taking oral meds and we only have 1 more to switch from IV to oral.  Her counts took a jump on their own...white cells are 3.8 today and ANC is over 2200.  Apparently (we missed this somehow) they drew a second engraftment study this past Monday and she continues to show 100% Donor Cells !!!!

The plan for today is more therapy time and I'll continue my training on PICC care and how to run the IV pumps.  Leah will be discharged to the apartment with IV fluids, Cyclosporine (her anti-GVH drug) and possibly Microfungen (an antifungal) and I'll be responsible for administering them through her PICC line.  Sally is a great teacher and they are very committed to making sure you are well trained and comfortable.

Rejoice in our good news, offer Thanksgiving to God and pray for her continued healing. 

O Lord Jesus Christ, the Life and Strength of all who place their trust in Thee, Whose mercies are without number, and Whose treasury of goodness is without measure.  We give thanks to Thee for the blessings which Thou hast bestowed upon Thy servant Leah, and we humbly beseech Thee to continue in Thy goodness toward us.  And as Thou hast been well-pleased to restore Thy servant to her bodily health, so do Thou endue her soul with heavenly grace and preserve her in good works.  Do Thou prepare us all, by Thy blessings in this life, for the enjoyment of eternal good things in the life to come.  For unto Thee is due all glory, thanksgiving and worship, with Thine unoriginate Father, and Thine all-holy and good and life-creating Spirit, now and ever and to the ages of ages.  Amen. 

Day +42: A Day of Firsts

What a day....what a good, good day.  What a blessing to have days like today.

Here's our day:

1. Leah got a shower.  A real, in the tub, scrub down, squeaky clean, shower.  First one (sponge baths don't count) in 7 weeks.

2. Leah walked (Amy you'll appreciate this) all the way to the therapy room today!

3. She took 2 meds orally today and we'll be working on switching a few over each day.  That, coupled with the fact that she is now no longer on Cipro or Meropenem (antibiotics), got her 5 hours off the pole today!  Completely unconnected!  

4. She tried sausage and eggs this morning (didn't taste good) but did successfully eat some WonTon soup this evening!

I'll be working with the Home Health Care people over the next few days to get trained in all her line care before we leave.  

I can't express how good it is to have my girl back to her old self.  She's smiling, talking, laughing and I love it.  

Ok, time to wind down and tuck her in soon....it was a busy day.  Pray for her continued recovery and that we can get out of here soon (her birthday is Monday and it would be wonderful to not celebrate it in patient).  - Sarah

Day +41: Seven Weeks

That's how long we've been here at CCH....7 weeks today.  It's day +41, but if you add on the 9 days we were here before we started counting plus days then today marks 50 days in patient. 

Wow.

The last several days have been a turn around for Leah.  The dietician on her team of docs suggested that the TPN / Lipids (her IV nutrition) could cause nausea.  So Dr. Davies suggested we turn it off for the weekend and what do you know....24 hours after it was turned off she was sitting up eating Funyuns!  Currently on the menu: Funyuns, Beef Jerkey, String Cheese, Sprite, Water & the occassional Cheddar Rice Cake.  Things that taste nasty: Milk, Gummy Bears, Applesauce, Fruit Rollups & Tater Tots.  

Let me tell you - after not eating for 6 weeks WE ARE THRILLED to see her eating!  And it gets us one step closer to OUT OF HERE!

Her spirits are up, she's been walking the halls, doing crafts in bed and feeling good.  Basically, my girl is back!  

The word this morning is that we will start switching over to oral meds a few at a time and if she keeps improving we will be looking at going to the apartment (aka Discharge) possibly Saturday or Monday.  :-)

HOWEVER...Our weekend would not be complete without a mini crisis.  A few days ago her line pulled out a bit and xray showed it was still in place.  Sunday morning she woke with her shirt and bed soaked.  An xray was ordered and it was determined that the line is working it's way out.  Furthermore, anything going into the line was causing her great pain.  The line has to go.  Sigh.

So yesterday Adam and I had to make some difficult decisions.  After much deliberation and discussion with Dr. Davies we opted to place a Pic Line which we pray will stay useable until we are done with IV meds / transfusions and thus spare her the need for another surgery.

This morning we are listed as an "add on" in the operating room to have her faulty line pulled.  It's a simple process (they literally just pull it out) but requires sedation.  The worst part is not eating after midnight the night before.  Since she is an "add on" they will fit us in when they can...hopefully sooner rather than later.

So there is the news from CCH.  Pray for all to go smoothly in the old line removal.  Pray that this Pic Line does it's job as long as we need it.  Pray she continues to improve and we can get discharged in the next week! - Sarah

Day +38: A Bump In The Road

Yet another bump in the road to Discharge.  

Two nights ago Leah got the chills and vommitting.  Now, THANKFULLY, she only got sick twice and while she worked on a fever never really hit the magic mark of 100.4.  However, she felt very very bad...nausea and belly pain.  

So, good news: nothing growing on cultures.

Frustrating news: nothing helps the nausea and it is still persisting.  

She's not felt like doing either PT or OT since then and that has put us at a sort of standstill.  Dr. Davies insists that this shouldn't be much of a delay and still feels that Leah is doing well.  She also believes that all the belly discomfort is a result of her healing from the mucositis which affected her entire digestional tract.

There have been plenty of other concerns to be dealt with over the last 48 hours.  High blood pressure (now under control), her kidney function has dropped by half (result of the Cyclosporine, the GVH drug...should get that function back), and her line pulled out about an inch and a half.  That last one sent my blood pressure through the roof.

I'll leave out all the details and say that they did an x-ray which showed it is still in good position.  However it is no longer stitched to her skin so we will have to be diligent in watching her dressing and being very careful with it.  As Dr. Davies said, "worst case it comes out and we have to put it back in the next day".  Obviously we don't want to have to do that.

That brings us to this morning.  She rested well overnight and is still sleeping peacefully.  I'm hoping that she will wake feeling a bit better and feel like seeing PT / OT or at the least sitting up to do some craft or coloring today.  She's still not strong, still not eating or drinking, still not taking oral meds.  Each day is a new day though and a new chance to improve and work toward discharge.  Maybe, just MAYBE, it can still happen next week.   - Sarah

A Moment To Say Thanks

Aside from all that has transpired with Leah in the last 7 months, the last 2 weeks has been an exceptionally difficult time for our family.  The unexpected loss of my mom hit us hard.  And while I know that she is walking the streets of heaven, worshipping God, praying for Leah and watching out for us, her absence has left a gaping hole in our hearts.

The outpouring of love and support that we received from all of you - from those came to give us a hug to those who have been praying - has strengthened us.  

In those first days we sat as a family and discussed lots of things, one of which was that we wanted do an "in leui of flowers...".  It didn't take but a moment to realize what mom would want...donate to the Leah Fund.  

So many have given and in doing so have shown their love for mom and our family and helped to ease my own family's burden.

So I wanted to say Thank You to all of you who have so kindly donated.  It is a blessing to our family as we continue this journey through bone marrow transplant.  We truly appreciate all you've done.

May God bless you and your families through this new year. - Sarah