Wednesday, May 30, 2012

Their Favorite Place

All day long I battle these two away from the bathroom sink.  Lincoln is just tall enough to reach the nob to turn on the water and the two of them turn the bathroom into a water park in five minutes unattended.  It usually looks something like the pictures below or Sawyer is on the toilet leaning over the sink and Lincoln is on the step.  We have a child proof lock on the door, but when I accidentally leave it open it’s one wet ride.  P1040388 (1280x961)

P1040390 (1280x961)P1040392 (1280x961)Now for an update on this little one.P1040393 (961x1280)Lincoln hasn’t had any treatment’s since May 7th when he finished Consolidation phase.  He has the hair to prove it!   He was supposed to start the next phase on the 14th.  For the past three weeks we’ve gone in to hoping to start, but his blood counts haven’t been high enough.  I already blogged about this a couple weeks ago so I don’t need to rehash why this makes everything complicated and difficult for our lives and schedule.  At the end of the day none of that even matters.  All that matters is that he recovers and never relapses.  I just want him to be healthy and live a long, happy life.  I would trade anything in the world for that.  That’s the hardest part about the delays in treatment.  It terrifies me that they will cause him to relapse someday.  Last Monday Lincoln’s ANC was at 650.  It has to be above 750.  So next Monday should be the day he finally starts phase three. 

On a brighter note, he’s felt fantastic the past month and we’ve been able to get out a little and enjoy the warm weather and even play with some friends. We went to a ward memorial day picnic and had a great time.  I was a slacker and didn’t bring my camera, but found these candid pics on my friends blog.  Thanks Jess!IMG_1838 (1280x853)

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I can’t believe how much we have going on over the next four weeks.  It all starts tomorrow when Sawyer and I fly out to Utah for my baby brother’s wedding.  Two weeks later I’ll be back for my baby sister’s wedding, and then it’s four hospitalizations, packing a house, and moving.   I hope to keep the old blog updated, but if I don’t you’ll know why :)  Wish us luck!

Monday, May 14, 2012

Disappointment at the Hospital

Ugh...Lincoln's appointment at the hospital went exactly opposite of what I'd hoped for. 

Bummer Number 1.
To start the next phase of his treatment his ANC blood count has to be above 750.  Last Monday it was at 200.  The Thursday before that it was at 100.  So we thought it was on the rise and he'd be ready to go for today but it was back DOWN to 100!  Had it been above 750 he would have been admitted for the next 4/5 days and received some new drugs on his treatment plan.  Now we have to wait another week and hope he'll be ready to go next Monday.  That was the first bummer of the appointment. 

Bummer Number 2.
I thought once his started this phase he could plow through it regardless of his counts.  I found out today I was wrong.  This phase consists of 4 hospitalizations about 5 days each time, every other week.  Today I found out the hospitalizations are only every other week as long as his ANC is above 750 each time.  So now, judging from the past few months, he'll probably have delays between every treatment, and this phase will drag out into August. 

All of this is hugely annoying and disappointing in and of itself...but on top of that remember how we're supposed to be moving to North Carolina the last week of June?!  Remember how we really want to finish this phase here in Pittsburgh because this hospital is excellent?  Remember how I have a one year old I have to find babysitting for every time Lincoln's hospitalized and now I'm going to never know when that will be until the day of?  Remember how I'm flying to Utah twice in the next month for two weddings and have no way of planning coverage for Lincoln in the hospital while I'm gone until I'm already gone?  Remember how I'm a planner and like know what to expect? 

I am definitively frustrated, but at the same time I feel oddly calm about the whole thing.  I think I accepted a long time ago that there are only a few things I can control throughout this whole experience.  I can control how much I can love and comfort and be there for Lincoln.  I can control to an extent how clean my house is and how exposed Lincoln is to people and germs.  The rest I just have to turn over to God and have faith that everything will work out.  There are a few other things we should remember.  Remember how I've been blessed with a sister and sister in law who are willing to drive 4 hours to Pittsburgh to pick up Sawyer and take him for a week at the drop of a hat? Remember how I have local friends willing to take turns watching Sawyer all day with little notice?  Remember how I have parents and a mother in law who are planning on flying out to help us move and watch Sawyer and help me adjust to a new city and hospital?  Remember how Lincoln is in remission and most likely going to be just fine?  Remember how I have a Savior who loves me and knows all my pains and frustrations and a Heavenly Father who hears my prayers and has an eternal plan for me and my life?  Glad we remembered :)

Oh, And Happy Mother's Day.  Best.Job.On.Earth.

Tuesday, May 8, 2012

Consolidation Phase Over! Cause for celebration.

Lincoln is officially done with his second phase of treatment.  Yay!  We still have two more 50 plus day phases before maintenance and then 3 years of maintenance…but we’ll celebrate any milestones we can along the way.  The next phase includes four, five to six day hospital stays every other week, so we’re gearing up for that.  But this week we are just happy and grateful for the progress he’s made so far. 

Some pictures for your viewing pleasure.  First - at the zoo, second - being spidermans in the bounce house.  Love to all!P1040275 (1280x961)P1040282 (961x1280)P1040284 (1280x961)

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