Nash Family Blog

Day +170: Six Months Post Transplant

Well, not technically, but we are really only about a week from being 6 months since Leah's bone marrow transplant.  Today marks day +170 since getting her sister's super cells and boy has she come a long way.  

We headed to CCH today for check up.  Here's the low down:

Neurology -they have no explanation for her headaches, which is a good thing.  However, the headaches persist, which is a frustrating thing.  We are taking a "less is more" approach.  With all the meds - and trust me there have been A LOT of them - that she's gotten we are going to take a month to basically let her body process things out before changing to another medicine.  So that is where that stands.

Bone Marrow Transplant Clinic - doctors are more than happy with how she looks and how she is doing.  We do not have her labs from today, but will get them next week.  They also sent off the first of her immunology studies.  This is where they will test her blood to see how many immunity cells she is making and whether or not they know what to do (i.e. how well they are working).  These tests will take more like 2 weeks to get back.  

As for summer, they gave us the "proceed with caution" light.  We can do what we are comfortable with using good hand washing and being careful.  We are slowly integrating back into society.

In other news: Dad is home which we are all very thankful for.  Thank you for praying for him.

In addition, my grandmother passed away on Wednesday and we will be having visitation and services early next week.  

It sure has been a difficult 2 weeks, but there is much to be thankful for with dad home and Leah doing so well.  Continue to pray that her immune system will develop and that she can remain healthy while enjoying all the things that kids like to enjoy in the summertime.  I hope you all enjoy your weekend and I will post labs and test results as they come in. - Sarah

Today's Agenda: An Update on Both Dad and Leah

Thank you to those of you who have been praying for dad as well as calling or visiting.  He continues to be a walking miracle getting stronger every day and destroying doctor's expectations.  He is up walking and eating now and his speech has improved dramatically.  While his short term memory is still spotty (he may or may not remember pieces of your visit the night before) he is expected to get that back.  Today they are meeting with one of his doctors to see about placing a defibrillator on his heart that would restart him should this ever happen again.  The placement could be as early as this afternoon.  Doctors still have no idea why this happened.

On to Leah...

This morning Leah and I will head in to see her physical therapist.  I am seeing great improvement in her core strength, but her legs continue to be weak and her feet continue to turn outward.  In addition to her reevaluation today we will see the orthotist from Midwest Orthotics who has made the braces for her legs.  

There have been alot of truths that have been hard to accept in this whole transplant process.  For me, the braces fall into that category.  Being told that this was a necessary step was hard to accept.  Who wants their child to be anything but healthy and perfect?  Leah needing leg braces - even though temporary - hurts my heart for her.  I'm sure seeing her in them today will be equally difficult.  But like everything else, it will become part of our "normal" and help her to be a strong healthy child doing everything she wants to do.

That being said, they have told us that if we go out that she can take them off so that she won't feel self conscious but that she needs to wear them at home and as much as possible.  They cannot definitively say how long she will need them....that is going to depend on how quickly she strengthens and trains her body to use the correct muscles.  Early indications are a year to a year and a half.  

Please pray for dad that the placement of his defibrillator will go well and that he will continue to heal quickly.  Also that his short term memory will begin to work as it should.

Pray for Leah that the combination of her braces and her exercises will QUICKLY strengthen her body and straighten her feet.  That she will be able to walk correctly.  That she will get strong enough to run in the back yard with her siblings, ride her bike and do all the things that a kid wants to do.

And thank you for being a part of our journey.  For praying for and supporting us.  We could not have done this without all of you.  - Sarah

Dad: An Update

I'm sure by now that most of you have heard about dad. If you have then scroll on down for the latest update and if you haven't then I'll bring you up to speed.

Sunday night dad collapsed at home.  Linda was with him when he clutched the counter, lost color in his face and fell to the floor.  His heart had stopped, he wasn't breathing and his face turned black.  It took 3 separate shocks with the paddles before his heart restarted and eventually they were able to stablilize him for transport to Haggin Hospital in Harrodsburg.  

The staff at Haggin quickly got him stable enough to transport to Central Baptist in Lexington.  He was taken in for a catheterization which revealed NO significant blockage that would have caused a massive heart attack.  They settled him into ICU.

Once admitted he was wrapped in a cooling system called Arctic Sun which effectively lowers your body temperature slowly until it reaches a cool 90 degrees.  In this state his body does the bare minimum allowing time for it to heal as well as keeping his brain from swelling and allowing healing from any brain damage caused by lack of oxygen.  Since his body was so cool he was placed on a ventilator and placed in a medically induced coma so that they could control everything from his heart rate to his blood pressure to his breathing.

On Tuesday morning they began the process of warming him back up very slowly and also cutting back his paralytic and coma drugs.  It didn't take long for him to fight his way back!  He has reached milestones in the last 24 hours much quicker than anyone could have expected.  He immediately began to move his hands, wiggle his fingers and toes and even try to turn his head.  By Tuesday night he was turning his head to look at you and reaching out to take your hand.  He pointed to the sink indicating that he wanted a drink and quickly got irritated with the ventilator tube down his throat.

This morning the pulmonologist came by and after his assessment determined that dad was breathing sufficiently on his own and pulled all tubes, leads and cords leaving him with only a PICC line.  What a relief it was to see him looking like himself!  

The nurses encourage us to keep it low key - immediate family only  - and let him rest.  He has however woken several times today and talked to Linda.  While he is still a little confused about where he is and such, he knows his name and birthdate and some other important information.  The nurses continue to tell us that they have not seen anyone move this quickly in their recovery.  

At this time they are testing for viral and bacterial infections that could have caused his heart to stop.  As of now they have found nothing.  It is likely to be classified as a cardiac arrythmia (much like when an athlete drops dead on the field) and if that is the case then they will need to surgically place a defibrillator.  

The next days will be tough as he tries to put the pieces together and remember not only his past and who we are, but what has transpired in the last 3 days.  

We are beyond thankful.  Dad collapsed dead on Sunday night and this afternoon smiled at me.  A true miracle.

Please continue to pray for his complete healing and strength as well as strength, rest and a clear mind for Linda.  Right now Linda is doing ok, her mom as well as other family are at the house taking care of the animals and keeping things in order.  We ask only for your prayers.  I'll try to update as things change. - Blessings...Sarah

Day +148: Unexpected Trip to Clinic

Well the final child finally fell victim.  Leah caught our cold.  With her sore throat and Daddy's recent round with strep we bought ourselves an unexpected trip to UK clinic today.  

The early test results on the strep are negative (whew!) but they will culture it to be sure.  Looks like a cold and hopefully she can kick it faster than the rest of us.

They also decided to draw labs while we were there since it had been quite some time since her last lab draw.  Everything looks good and I am pleased to report that she is finally making platelets!  We've been waiting for so long for her body to kick in and make them!  She has been holding at the 45,000 to 60,000 range which is extremely low and today they were 139,000!  Yeah Leah!

So, we'll treat the cold like you treat a cold and pray that we can ALL beat this nastiness soon!

Where The Heck I've Been

Why yes it has been an eternity (at least it feels that way) since I last posted.  15 days to be exact.  All I can say is life has been cha...ot...ic.  

Here is some random details about the last 2 weeks:

1. Today is day + 146 for Leah.  Aside from her headaches she is doing wonderfully. 

2.  I have begun taking a kickboxing class.  It's been brutal.

3.  We enjoyed dinner and Easter egg hunt at my mom and step-dad's with all the cousins.  While it was a great day, I couldn't help but miss my mom.

4.  Aaron has moved out of his convertible car seat and into a BIG BOY booster seat.  To say he is excited is an understatement.

5.  Adam has had strep and the rest of us have had a neverending miserable cold.  Leah has continued to remain healthy.  What a blessing!

Last week we made a last minute decision to take a mini vacation to Gatlinburg.  Adam was able to locate a brand new cabin (never been stayed in!) which we rented for 4 nights.  We had an AMAZING week!  Even with everyone (except Leah) sick we managed to have a great time.  The cabin had a heated indoor pool, hottub, pool table, and arcade machine!  There was go-carting fun, dinosaur boat rides, Indiana Jones type exploration adventures, Magi Quest, and ice cream.  The photos are here.  

Isaac lost his first tooth!  Leah lost another one....and the toothfairy does come in Gatlinburg.  I rode go carts for the first time in like 25 years and it was SO...MUCH....FUN!  The kids were too small to drive the big tracks so I took them all on a ride individually.  I wish I could tell all the stories on here, but there is just too much.  I'll leave it at the fact that we had a great time!  

I think that brings things up to date.  I will promise to attempt to do a better job at posting.  I'll leave you with two pics from my mom and Mike's house at our Easter celebration.

Egg Hunting!

Almost all the cousins...

 

Weekend Recap

For those of you who like timelines...Leah is Day +131.  Pretty incredible when I think back to where we were a few short months ago. 

Friday night Leah woke with bad vomiting and diarrhea which remarkably came as quick as it went.  Her last round of stomach illness kept her from eating for a week and landed her in the hospital dehydrated.  Thankfully....oh so thankfully....she woke Saturday morning and downed some Gatorade and crackers and began a turn around.  I pray that this was not only God protecting her, but a sign that her immune system is starting to develop.  

With that behind us we set in to enjoy our Easter weekend and even got to take Leah to Church! 

Christ is Risen!  Indeed He is Risen!

We wrapped up with one child at Mawmaw & Papa's, a group of us off to my brothers for dinner and kickball and others out with friends.  

Today we were back in the swing of our chaotic life tackling house cleaning, meals, laundry and school. Now it's time to check those ribs in the oven....  

Day +125: Results Are In

Dr. Greenwood called just a little bit ago and Leah's MRI showed no malignancies!  Thanks be to God!  There were some insignificant abnormalities on her frontal lobe, which is where her headaches are, and Dr. Greenwood says that this could be related to her medicines.  They will send the report on to CCH and I'll contact Dr. Jodele to see what the headache team there wants to do now.  Likely we will change her headache medicine to see if that will help.  

I feel like I can finally take a deep breath....a breath filled with thanksgiving.  

Ok, now that I can focus again I'll go try to prep dinner, clean, switch laundry, I think I need some headache medicine myself, and there is still schoolwork to be done (that might get pushed off to tomorrow).  Beauty in the mundane!  Later....

 

Day +125: Awaiting Results

Yesterday Leah had her first ever MRI.  The headache clinic, with the assistance of our BMT docs, are trying to figure out her headaches which persist.  While they seem a bit better, they are daily and have been going on now for about 2 months.

Leah, being the unbelievably amazing kid that she is, handled it like a pro.  Today we are awaiting results from the MRI....an anxious time.  You just never get used to the waiting game when it comes to your child's test results.

That's the news.  I'm off to start school and will update when we have information. - Sarah

Day +115: Looking Good

Yesterday was our monthly trip to CCH for Leah's checkup.  I'm happy to report that she is doing great!

Counts are as follows:

ANC 2550 & White Cells 3.8  (we were anxious to see both of these after her big drop of counts at UK on Tuesday)

Platelets 69

Hemoglobin 12.5

All good numbers.  Her platelets continue to bounce around in the 45-75 range, but they are unconcerned at this point.  Her body has yet to make a normal amount of platelets, but that will come. We are not needing to transfuse so that is good.

Dr. Jodele loosened restrictions a tad too!  She can now have a few visitors if they are healthy and we can go to a restaurant as long as it isn't busy!  Also, I can go back to vacuuming my house while she is here!  

We'll go to UK in 2 weeks for her Pentamadine and back to CCH in one month.  Dr. Jodele is requiring no labs before our next visit to CCH!  

We are thrilled and continue to be extremely thankful for her recovery and for the gift of life that Mae was able to give her.  Someday she will be able to fully understand what she did for her sister, but for now we are thankful that God made her body in a way to be able to help Leah.  A true blessing!  Thank you all for your prayers and please continue to pray that Leah can stay healthy and strong.

I'm off to unload the van full of groceries, get Aaron milk and get ready for UK TO KICK SOME LOUISVILLE BUTT!

Dropping Counts & Going Home

This mornings labs showed a significant decrease in Leah's ANC (only 850) and white cells (only 1.8).  Dr. Geil has little concern.  His explanation is 3 fold:

1. Receiving 3 bags of fluid in less than 24 hours dilutes the blood and can account for lower counts.

2. It appears that the diahrea is a viral bug in her GI tract which could be affecting her counts as well.

3. There is nothing else in her blood work that indicates any reason for concern. (i.e. abnormal cells)

So with that being said we are being discharged.  She is sufficiently hydrated and her potassium level is back up into normal range.  We'll be pushing water drinking and maybe powerade or bananas for potassium while we wait for this bug to pass.  Unless we hear from UK that something shows up in her stool studies we'll wait and go to CCH on Friday for our monthly follow up.  

So that's the word.  Glad to be going home and praying that these counts are nothing more than a virus and lots of fluids.  Thank you all for your prayers. Here are some pictures from the last few days....

A mask Leah made yesterday after we got settled in here at UKCH.

Leah and her cousin Emma who stopped by with her parents and brothers for a quick visit on Sunday.