Rough Week

It's been awhile since our last update, which generally means that all is well.  Everett is almost done with his 3rd of 5 weeks of Consolidation 1b, and was doing great as usual...until Monday morning when he woke up with a fever.  He and I were headed to Childrens for week 3 of arsenic treatment, and hadn't even made it out the door before he threw up all over the kitchen floor.  With the average kid, a fever and vomiting isn't cause for concern, but with Everett every fever could mean being admitted as an inpatient, so I was more than a little worried.  I got him to the clinic as fast as I could and his nurse and doctor agreed that our little guy was not himself.  After a quick exam and blood cultures, the doctor diagnosed an ear infection and started fluids and antibiotics.  We were all hoping that Everett would be feeling a lot better Tuesday morning.  He did pretty well Monday night though he had very little energy and just wanted to cuddle, but unfortunately, things got worse Tuesday morning with more vomiting and severe diarrhea.  The doctors think he has a GI virus in addition to the ear infection, and have been giving him lots of IV fluids when we are in the clinic for his arsenic.  Today was a little better, no vomiting at least.  I'm saying my prayers that he wakes up tomorrow feeling a lot better. 

Seeing Everett so sick this week has been tough on me, mostly because there is nothing I can do to make him feel better.  But it also reminds me just how lucky we have been this far in his treatment.  All of the meds that are used to treat Everett's leukemia are poisons and come with a laundry list of potential side effects.  So far he has sailed through all of it side-effect-free.  What a blessing and gift from our amazing God. 

Much love,
Val

On to Consolidation 1b

I think I was remiss in my last post in saying we were 'finished' with Consolidation 1.   Technically, Consolidation 1 has 2 - 5 week outpatient treatments and as of today we have started part 2 of Consolidation 1.  (It will be the middle of May before Consolidation 1 is complete)  The process is the same as before:  Val and I are taking turns each week being at the Ronald McDonald house while Everett gets his Arsenic every day for 5 weeks and ATRA for the first 2 weeks.  The parent not in Pittsburgh gets to enjoy some one-on-one time with Avery Caker.

We know what to expect this round and we don't have the fears we had the first go-round.  We try to take it a day at a time but we know once this round is over we'll be back inpatient with high doses of Cytarabine and Mitoxantrone, including injection into Everett's spinal cord.  Knowing that his treatments will most likely consume the whole summer and will leave him frequently with a poor immune system we are struggling coming up with ideas for him to enjoy the nice weather and doing the things a 'normal kid' can do.  Dad is doing his best this week to gate in our deck and maybe next weekend we'll get a sandbox for the boys to play in.

For now we wear our "My Son is my Hero" shirts proudly and know that we're blessed to have Everett with us.  Like new parents, we still check to make sure Everett is breathing every night before we go to bed.

Below are some pictures from the Children's Museum in Erie where Avery and Everett had an amazing time last weekend.

Much love to all those who have and continued to support us.  Your thoughts, blessings, and prayers get us through each day when we need that little boost.  One day, hopefully soon, Everett will thank all of you personally.  God bless.