Saturday, June 23, 2012

Just Another Incredible Hospital Event

There have been a several times since Lincoln was diagnosed 5 months ago when I have been completely overcome by the magnitude of goodness and love that people, most of whom strangers, have displayed on behalf of my child and the hundreds of other beautiful children at UPMC children’s hospital.  It hits me with the force of a high tide ocean wave and moves me to tears.  The Hawaiian Luau last Wednesday was one of those times.  There are so many good people in the world doing kind things and I’m witnessing them from front row, center field seats.  There is kindness and love in the eyes of every nurse, doctor, specialist, director, and volunteer I’ve met and they’ll never know how much I appreciate them.  This event was sponsored by the Ronald McDonald House and was totally awesome.

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This week at the hospital Lincoln learned how to ride his IV pole.  He was pretty proud of himself.P1040645 (961x1280)

Can we get a close up on that face?  He melts this momma's heart.  Half way done with Phase 3 Lincoln.  Stay strong buddy.  You’re doing awesome.

P1040646 (771x1061)P.S.  Tom and Lisa’s Wedding blog posts to come.  Just have to sort through about a thousand wedding pictures first.  Stay tuned!

Thursday, June 7, 2012

Prom at the Hospital

He was over the moon excited.  So excited he went to bed the night before talking about it and “go to party” were the first words out of his mouth the next morning.  At 2:00, 4 hours before the party started, I finally gave in and let him put his “party suit” on.  Then this was him at 5:30.P1040456 (1280x961)P1040460 (985x1280)He was out like a light.  It took a good while to wake him up and in retrospect maybe we should have just let him sleep, because he didn’t so much love the Prom.  It really was a phenomenal party.  My hat goes off to it’s directors because it was really pretty incredible.  It was “Alice in Wonderland” themed and the décor, food, and entertainment were top notch.  My one and only complaint was that the music was too loud.  I know I sound like your great grandma, but it really was blaring and Lincoln was scared and crying that it was too loud and hurt his ears.  I should have just said something to someone but I didn’t want to be that mom complaining after all the work that went into everything.   So between the loud music and the fact that we’d just woken him up and he was still tired he was pretty grumpy and we didn’t last too long. 

We were greeted by the Queen of Hearts.P1040466 (961x1280)Then we went straight outside to the gardens to avoid the loud music and got him a cup cake to try and brighten his mood.  It worked for a little while.P1040475 (961x1280)P1040472 (961x1280)P1040476 (961x1280)P1040478 (961x1280)P1040479 (961x1280)P1040482 (961x1280)P1040483 (961x1280)P1040486 (961x1280)P1040487 (961x1280)

Then he finished it and was back to hysterically crying that he wanted to go home.P1040489 (961x1280)So I told him if he smiled for a few pictures he could go back up to the room which resulted in the following three attempts at feigned happiness.  P1040493 (1280x961)P1040497 (1280x961)P1040511 (1280x874)

We took him upstairs to his room and then I went back down to the party to snap a few more pics and get my party on for a few minutes with Garrison.  Remember him?  Sad to report that he’s back.  He relapsed and things aren’t going so well for him.  And I’m terrified that Lincoln could be in his shoes at any point in his treatment.  And it’s so unfair.  We had a good time, and he even made the local news. P1040554 (1280x961)  Now check out this décor.  These pics do not do it justice.

P1040525 (961x1280)P1040528 (961x1280)P1040527 (1280x961)P1040533 (1280x961)P1040536 (1280x961)P1040538 (961x1280)P1040557 (961x1280)P1040543 (961x1280)P1040544 (961x1280)P1040546 (1280x961)It was in a solarium so there were spectators three levels up watching the party from above. P1040550 (961x1280)

rabbit (960x640)Thanks Children’s.  It’s heart warming to think of the all the efforts so many make to help these kids feel happiness.  I’m pretty sure if even one of those precious kids had a good time and forgot about their sickness then the work was well worth it.

Wednesday, June 6, 2012

Phase 3 begins-Mixed Emotions

Phase 3 begins – Monumental.
Well, his counts are up.  All the way up.  He went from an ANC of 650 to 2700 in one week.  Thus he was admitted to the hospital and finally started phase three of his treatment.  It's strange and depressing that I celebrated and happily received the news that my baby was able to resume chemo and thus resume feeling sick, living at the hospital and begging to go home.  Yet, I did.  And I am grateful.  It is a bit of a monumental achievement, beginning phase three.  It's noteworthy because the first day of this phase marks the beginning of the count down to the end of his treatment.  If he doesn't have any delays from here on out (which I've sadly learned is hugely unlikely) or heaven-forbid relapses, then three years from yesterday he will be done with treatment.  Completely.  June 4th, 2015.  That date is now starred, highlighted and smiley faced to no end in the calendar of my brain and will remain so until that day when I can finally cross it off and throw the worlds biggest celebration. It will be a month before he turns six years old.  June 4th 2015 is further away from now than his whole 2.5 year old life.  It's still quite daunting, but it's progress.  It's a light at the end of the tunnel.  While I'm positive I will be tempting to wish the days away between now and then, I am determined not to.  I promise to enjoy and cherish every moment of the next three years of his precious, sweet little life and make them as full and vibrant and beautiful for him as humanly possible.

 Why it’s hard today.
Now pardon me while I vent and get some frustration off my chest.  Things are a little different this time around staying in the hospital.  Back in January when he was diagnosed and we spent our initial two and a half weeks here his vocabulary was pretty limited and it's becoming increasingly apparent just how much it's grown in the past 3.5 months.  Back then I wished he could communicate and tell me exactly how and what he felt instead of just crying and begging the same short phrases like "mommy hold you" and "kiss it better".  Well, I guess the grass really is always greener on the other side because now, three months later he's added to the requests and pleads "Want to go home", "Want no more hospital", "want to take the bandaids off", "want no more tubes in da port", "Please Mommy?  Please?"  May as well rip my heart out and stomp all over it.  Being a mom has expanded my emotions in all directions.  I feel things more deeply.  Everything is magnified to the millionth degree, especially when it comes to my babies.  So when my baby is crying that he "feels sick and wants to go home" and there's not a darn thing I can do about it just sucks.  And so we cry until I eventually find some sort of distraction or some way to comfort him that finally calms him down.  That's how last night, this morning, and much of the day went.  And I hated it.

What he's getting.
Today Lincoln received extremely High doses of Methotrexate.  Remember that drug?  The one that there's currently a national shortage of? 
Words cannot describe how grateful I am that this hospital's supply has been unaffected.  I shudder to think there are children who could be otherwise cured dying from Leukemia because methotrexate production has slowed.  This is America for crying out loud!  Things like that don't happen here right?  Wrong. Thank you, thank you, thank you that Lincoln is at the state of the art Taj Mahal of all hospitals that is UPMC Children's. So as thankful as I am that he's getting it, it's definitely making him feel like shiz.  He got it in his spin as well as through his port today, along with vincristine and 6mp.  If that's not a cocktail for feeling crappy I don't know what it.  In all honesty though he's handled it pretty well so far.  No vomiting, no mouth sores. Just a lot of crying and lack of appetite.  And the all the crying and grumpiness may just as likely be from all the sleep he's not getting here.  Regardless the source, he's not been happy today and it is hard.P1040447 (961x1280)P1040421 (1280x961)

Tomorrow will be better.
I'm sure of it.  Tomorrow will be better because Lincoln and Ryan and I are going to the Prom tomorrow night.  That's right.  The Prom. And Lincoln is so excited.  The happiest part of his the day was when a child life employee told us about the big dance party tomorrow night at the hospital.  Then they GAVE him a suit and a top hat to decorate for the occasion.  (Have I mentioned how amazing this place is?)  Lincoln vividly remembers the dance party we went to at the hospital a few weeks after he was diagnosed and still talks about it so I am thrilled we get to attended another.  With that happy thought I'm off to bed to dream of tomorrow's Prom and June 4th 2015 and all the precious days in-between.

Trying on the his jacket and home-made top hat in preparation for the big night.P1040450 (928x1280)P1040455 (961x1280)