Home.

Forgive my lack of posts lately.  We spent almost two full weeks at home after Tessa’s last round, which means we were fortunate enough to have Christmas at home as a family!  I gave all of my energy and focus to my family and our business and the holidays as well.  Even if I would have had time to write a post, it would not have been worth the read because my brain was totally fried.  Somehow I ended up here, with a brain full of scattered thoughts and a lengthy post for your Friday night reading pleasure.

Going home is great.  Obviously I look forward to taking Tessa back home almost as soon as I bring her to the hospital, but going home is also stressful…really stressful for a number of reasons.  For starters bringing home a child with recovering blood counts is scary.  My home has to be nearly spotless upon her arrival, and I have to trust that everyone who enters has taken proper precautions before visiting.  We also should maintain a healthy house as best we can.  And let me tell you–that task has been our biggest challenge of being home yet.

The first time we brought Tessa home after treatment I had Kendal in the ER for croup two days later.  Dan and I both got strep throat two days after that.  This last time I had Kendal in the ER the day after we brought Tessa home for what appears to have been the flu and dehydration followed by many sleepless nights, a trip to the ER for a migraine for mom, and a return trip to Urgent Care for Kendal for an ear infection.  Whew.  I am even exhausted just typing that.  Kendal went from being the easiest baby on the planet to a particularly difficult baby.  We fell further and further behind in work and I failed to maintain our home’s need to be in mint condition for Tessa’s sake.  Dan and I both running on little sleep and even less patience joked, “How is it that our medically fragile child is actually our easiest part of being home” as Tessa sat cool as a cucumber while the craziness circled her.

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While at first laughing at the hiccups of home was the easy thing to do, I’m going to level with you…at one point I lost all control.  Because I am only human and I can only handle so much.  I was at the crossroads of “defeated” and “dead end,” and I threw myself the biggest pity party that I could.  And I do not feel bad about it.  I think it is okay to feel sorry for ourselves now and again.  It has to be natural to wish that things would be easier when feeling completely lost.  Even though it makes me uneasy, I have to trust my vulnerability.

And life goes on.

There were many beautiful moments bursting through the not-so-beautiful moments each day.  I mean for one thing we had Christmas at home!  Santa also visited!  We went to two Christmas’s as a family.  The girls caught up on lost time and I was there for it all.  On Christmas morning, the holiday itself threw up all over our living room and entertained the kids for hours!  Dan and I sat back just watching them excitedly shift from one new toy to the next.  And when my holiday nostalgia wasn’t in overdrive, I noticed that counting our blessings was easily as natural as feeling sorry for myself was during the rocky times.  Maybe there is something more to the “little things in life” perspective that I found while being home.

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We are back in the hospital at the start of round three for Tessa’s chemo.  We are ready to close out 2013.  Our one and only New Year’s Resolution is to help Tessa beat leukemia!  I am ready to replace a year of worry and sadness with a year of triumph and victory!  2014…be good to us.

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Dear Tessa: So Long MDS!

Dear Tessa,

We are well into your third week for you second round of treatment.  We are just waiting for your numbers to climb back up so we can go home.  You have been in isolation for ten days now thanks to parainfluenza.  More importantly, you were able to fight the virus well enough to avoid any serious respiratory issues while your immune system was weakened.  For that, I am especially thankful!

You had a virtual chat with Santa last week on an iPad!  Basically it was you shouting “Tannn-ta” and “Ho-Ho-Ho” and laughing hysterically at the questions he was asking you.  It was probably one of the best memories that I have of you here in the hospital.  The sheer joy beaming from your little body as you watched Santa in complete amazement was positively overwhelming, and I soaked up every last bit of it.

Overall, this stay has been good to you…even through the isolation.  Isolation has forced us to be together in your room all day and night; and as fun as that has been and everything, it has also been a true test of my patience.  In case you were wondering, I still have a lot of clean up to do in that aisle.  But on the bright side, look at you leaping through development…PhotoGrid_1386789547203

Self feeding!  Whoop!  Do you want ranch dressing on everything?  Sure, but I have learned to pick my battles.  Therefore, I think it is fair to say that we both did a little victory dance that night.

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There you go crushing the rim again.  We raised the hoop up yesterday, Miss Basketball, so now you have to work on a jump shot.

When your days are full and you have fully exerted all of your energy in play, you let me rock you to sleep.  To be perfectly honest with you, it is my most favorite time of the day.  Not because you are finally asleep, but because you are all mine.  No one is telling me to put you in bed.  I am not rushing back to work.  I am rocking my first born while lullabies close your eyes for as long as I like.  Just like when you were brand new, you wrap your fingers around mine and I watch you sleep.

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Last week your preliminary cytogenics report appeared as though the Myelodysplastic Syndrome was gone from your bone marrow.  The doctors ran an additional test to be sure.  This morning, we learned that you are in fact 100% free of MDS!  No more Myelodysplastic Syndrome!  Tears can’t describe the feeling that came over me!  But I rushed to call your dad, and he felt the exact the same way.

Initially we were told a transplant would be the only way to correct your bone marrow, but you did it!  And I could care less if I ever get another Christmas present in my life, because (outside of being cancer free) this is the best one yet!  It won’t be long and we will be celebrating your victory over leukemia!  I know it.  Every minute I hold you near me, I promise you more and more that I will help you beat this.  We will get you out of here cancer free some day.

You are capable of so many great things, dear.  Never, ever forget that!  Got it?

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Photo credit: John Maniaci, Hospital Photographer

I cannot wait to take you home for Christmas!

Love, Mom