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)



Lisa Weiler said...

Oh Cheryl I have such similar mixed emotions for you and your family. You guys are so awesome. I love your outlook, its so healthy to vent the frustrations and also to not wish away these three years. What a blessing to be at that hospital. So fun they host a prom! He looks great!

DC Diva said...

I miss him so much! He looks adorable in that hat and suit. What an amazing hospital. Seriously!!! I hate that he knows/understands more and can tell you and it frustrates him and breaks your heart. I want to cry with you. What polar opposite weeks you are having this month. I will count down and celebrate the small things with you every day until 6/4/15. I love you.

Steph said...

O I am counting down Til June 4, 2015 too!!! Love how cute he is in his coat and top hat! What u wearing to the prom?

Ali Snow said...

What a cute little boy. I'm so excited to celebrate on June 4, 2015 - but that does seem forever away. I'm excited to see the pictures of Prom. Loves.

Heather said...

Oh my, Lincoln looks so dapper in his suit and top hat! I love it! How can you stand that level of cuteness?

Lincoln's treatment will end at the same time residency ends for Jeremy. That will be easy for me to remember. Lincoln will be so grown up. It's nice to see the light at the end of the tunnel.


Mike said...

June 14th, 2015 is also burned into my brain calendar. I love you Cheryl. You inspire me.