Did I Ever Tell You How Lucky You Are?

When I was quite young

and quite small for my size,

I met an old man in the Desert of Drize.

And he sang me a song I will never forget.

At least, well, I haven't forgotten it yet.

He sat in a terribly prickly place.

But he sang with a sunny sweet smile on his face:

When you think things are bad,

when you feel sour and blue,

when you start to get mad...

you should do what I do!

Just tell yourself, Duckie, 

you're really quite lucky!

Some people are much more...

Oh, ever so much more...

Oh, muchly much-much more

Unlucky than you!

About a week ago I woke up and saw a few red dots on Eli's face but didn't think too much of it.  I figured it was probably baby acne or that maybe he had scratched himself during the night.  By the next day the dots had spread to his neck and were starting to show up on his little body so I called and spoke to the triage nurse at our pediatrician's office.  I explained to her what was going on and she said it sounded like he was just getting baby acne and that he should be just fine.  About 2 days later the rash hadn't gotten any better and was spreading and Logan happened to have the day off so we decided to take him to the doctor just to make sure everything was okay.  Long story short...Eli was admitted to Primary Children's Hospital a few hours later because they weren't sure what was causing his rash and when they did some blood work they discovered he had very low white blood cells.  We've spent the past several days at the hospital as the doctors ran tests to determine which virus might be causing the rash and the low white blood count.  We were hopeful that even if they couldn't figure out what virus he had, it would at least run its course and we would be discharged within a few days or maybe a week.  You can imagine our shock, then, when the doctors came in our room on Sunday morning and told us that Eli has SCID.

Severe Combined Immune Deficiency or SCID is a rare genetic disorder in which affected children have no resistance to disease.  Basically Eli was born with a very poor immune system which means he doesn't have the ability to fight off any kind of bug.  The only way to cure SCID is for our tiny little guy to have chemotherapy and a bone marrow transplant.  I've had quite a tough time wrapping my mind around the thought that our perfect little baby will have to go through something so difficult.  As expected, Logan has been an absolute rock and brings strength to our little family only a daddy can bring.  I know we will make it through this because we have him at the head of our family.

Long and Short-Term Outlook:

Because we just barely received this diagnosis we are still gathering and trying to understand the enormous amount of information there is for us to know.  However, we have a pretty good idea of what our basic timeline is.  Eli's blood was just sent to a special lab out of state that will determine his bone marrow typing and tell us what kind of match we are looking for.  It will take about 2-3 weeks for us to receive the results of this test.  Once we receive his typing, it will take roughly another 2-3 weeks for them to find the best match possible.  The best matches are typically found in siblings but because Eli is our first baby they will look elsewhere.  Once a donor is found, he will undergo a form of chemotherapy to wipe out the little immune system he has.  This is necessary so his current (although weak) immune system won't attack the new one he will be receiving.  We're not exactly sure how long this will take but I assume a few weeks as well. The next step will be the actual bone marrow transplant.  The transplant will take a few hours and then the recovery will begin.  The estimated recovery after the transplant is about 2-3 months.  Overall, the doctors have told us that our stay here in the hospital will be roughly 4-6 months.  Hearing this news was definitely tough for me at first because it means an entirely new lifestyle for a while.  Some people have asked why we can't go home until his transplant and the answer is because Eli basically has no immune system so it is way too dangerous for him to be outside of the hospital.  He is currently on a unit that is very clean because it is made up only of kids with health issues like Eli's or cancer and things that they can't spread to one another.  Eli is also in isolation so we aren't able to have any visitors for fear he might catch something before his transplant and not be able to fight it.  I will basically live here at the hospital and try to make Eli's life as normal as possible over the next 6 months and every moment Logan isn't at work he will be here with us in our new little home.  Despite being away from our regular home, as long as we have each other I know we will be perfectly happy together.

Long-term, Eli's prognosis is very good.  The success rate of his bone marrow transplant is very high (about 90%) and the doctors expect him to make a complete and full recovery.  Although it will take some time, once the recovery process is complete Eli should be completely cured and be able to live a normal lifestyle.

Counting Our Blessings:

Although we now find ourselves in less than ideal circumstances, Logan and I can't help but be incredibly grateful for the blessings and tender mercies that have lead us to where we are now.  The majority of children with SCID don't catch the disease until much later than we have because it typically takes a while for the child to start getting sick and not get better until their parents realize something is wrong.  Eli has seemed perfectly healthy to me and Logan so had it not been for the rash he developed that prompted us to take him in, we may not have found this until much later when he was much more sick.  The doctors hear at PCMC have told us that this is the earliest they have ever treated a baby with SCID.  One of the great advantages of catching it now is the fact that Eli will go into his treatment healthy (assuming he doesn't catch anything in the next couple months) rather than very sick like many children.  They are confident that his good health will be a great benefit during his recovery.

As news has started to spread about Eli's condition, Logan and I have been completely humbled by the amount of love and support we have received from our family, friends and ward family.  The prayers and well wishes that have been sent our way have been a greater help than you can imagine.  It brings great comfort knowing we have so many people keeping us in their thoughts and cheering our little Eli on so thank you from the bottom of our hearts!

While we wish our sweet boy didn't have to go through this trial so early in life, we also know that things could be much worse.  We feel very blessed that the chances of a complete recovery are so high and that he is being taken care of at the best hospital he could possibly be at.  Although there will be days that are tougher than others, we will continue to be eternally grateful that we were blessed with this amazing spirit in our lives.

That's why I say, "Duckie!
Don't grumble!  Don't stew!
Some critters are much-much, 
oh, ever so much-much, 
so muchly much-much more unlucky than you!"