Hospital Stay Extended - Day 19

Our weekend has been up and down to say the least.  The hospital stay that we had hoped to be only a few days is looking like it will be about two weeks now.  Ellie's fever persisted through yesterday but was back to normal as of this morning.  Her blood counts have shown a Neutrophil level of 100 consistently since we got to LPCH on Friday morning, again way below the required 500 for discharge.  As a complication, her bad diaper rash, which can be attributed to the combo of chemo drugs that stop her up and side effect meds that aim to reverse that, has helped a Cellulitis infection to take hold of a portion of her right leg.  She has begun antibiotics for that which are different than the antibiotics she is taking for the bug that caused the fever.  The side effect of the Cellulitis is that her leg is very painful now and her ability to walk at all has been impaired significantly.  They have given her a very small amount of morphine to make her more comfortable.

All that being said, her age and innocent view on the world right now keeps it from getting her down.  She received a quarter of a liter of blood on Saturday which we are finding out is a huge energy boost for a good 48 hours.  With the exception of a few hours today when her leg was really hurting her, she has been laughing a good amount and playing with all of the toys the hospital drops off at the room.  Her appetite seems to be decreasing a little now since we are four days clear of the steroids.  Ellie's resiliency is amazing to me.  She now communicates almost instantaneously when her diaper needs to be changed which helps keep the rash down and hopefully let her poor skin heal up.  She also doesn't see the sense in going stir crazy in the hospital room like her father, so I am thankful.

The next big chemo treatment day is Wednesday and like I mentioned before, if her immune system does recover a small amount to possibly near the 500 mark, it will be shot down again by the Danorubicin.  We are in a wait and see mode with this Cellulitis.  If it clears in 48 hours when the antibiotics are supposed to be in full affect, we will feel much better.  If that does not happen, more tests will be needed....possibly an MRI on her lower body.  We are praying this isn't necessary because the amount of things we are putting into her little body right now is very overwhelming.  I know this is the exact place she needs to be right now....but I am not a fan of the extended hospital stays.

We continue to look with hope towards our benchmark coming up now in less than two weeks - the Day 29 bone marrow aspiration.  A clean result will signal the end of this intensive Induction phase.  We hope to meet our long term oncology doctor tomorrow for the first time as he returns from his three week vacation finally.  The one major issue we have had thus far with LPCH is that the consistency of which doctors we've seen over the past 3+ weeks has been anything but consistent.  I know everyone is relatively on the same page with this universal protocol, but it would be nice to have a familiar face most days so not to feel like we're being passed around to every staff doctor while being fit in to their busy day.  Ellie deserves that.

I need this prayer tonight, so I can have a fresh start tomorrow:

The Serenity Prayer

God grant me the serenity
to accept the things I cannot change;

courage to change the things I can; 

and wisdom to know the difference.

Living one day at a time;

Enjoying one moment at a time;

Accepting hardships as the pathway to peace;

Taking, as He did, this sinful world as it is, not as I would have it;

Trusting that He will make all things right if I surrender to His Will;

That I may be reasonably happy in this life

and supremely happy with Him Forever in the next.

Amen.