Home days

We have been home for almost one week.  I always loved being home, but I never knew just how much until home was the last place I could be.  I love home.  I love having my family together.  I even try to envision ways that would allow us to do all of her treatments at home and how I would present this lavish idea to Tessa’s extended team of specialists…because I am sure that a nationally recognized children’s hospital would go for something like that.  It sure would be nice though…

I know that the hospital is a good great place for her to be.  But when we are there, little moments like this don’t happen.

tessa and kendal

The good news is that Tessa and Kendal picked up where they left off.  I am also certain that amidst the jabbering that takes place in the toy room, they are sharing stories of mom and dad’s parent fails that took place in each other’s absence.  Like, “Kendal…girl, listen to this…one morning in the hospital mom was so out of it, she forgot to put a diaper back on me after she changed me…showed her!”  Kendal would appropriately respond like, “I can top that!  Dad put me in pants that were two sizes too small AND forgot to feed me breakfast so I puked on him.  Boom!”  Babies do that, right?  And just like that, my little co-conspirators are back at it making sure that their mom and dad stay on their toes.

We may have triumphed over Tessa losing her hair (which has really fallen out substantially since the above picture), but the one side effect of chemo that we cannot overcome is that it has turned my child into a salt-loving maniac.  To be more specific, Tessa is hard up for chips of any kind at any time.  It is a daily battle.  At the hospital everyone was all, “Well as long as she’s eating we are okay with it…”  At home during breakfast when she is begging me for the chips in plain sight (thanks Dad), and I tell her that she cannot have chips my life looks like this…

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I feel like I am living with a real life addict.  How long before I need to call A&E and set up and intervention on this chick?  The girl wants chips…all day long.  I guess we will worry about correcting her diet later.

Having a child with cancer obviously changes everything.  Besides the obvious including home medical care, there are several little changes that have to take place as well like no real Christmas trees, no fresh flowers (which will probably be the only “doctor’s orders” that my husband will ever follow), hand sanitizer at every corner, vacuuming, cleaning and disinfecting daily, etc.  If it all helps get Tessa through her treatment with ease, of course we would do anything.  This also means that holidays will be spent much differently than we would normally spend them.  We will either be at home alone or in the hospital.  We have also decided to celebrate them when we can.  Therefore, our first (ever) artificial Christmas tree will be going up tonight.  ‘Tis the season at the Carey house!

Just now as I was writing this post, it was too quiet…way too quiet.  In my house this usually means Tessa is doing something she shouldn’t.

Busted!

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This little series of events transpired like this, “Tessa!”  The top left picture is when she said “Uh-oh,” then she signed “clean up” and went about her business doing just that. You would think that by now I would have learned.  Nope.

Home is good.

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Tessa will return to the hospital on Tuesday for a bone marrow biopsy and a spinal tap. She will be admitted a few days later after all necessary test are done.  Tuesdays biopsy is critical.  If she is in remission (as we suspect that she is), then we can continue treating her with the same regimen of medicines as she had in the first round.  If she is not in remission, the plans would change meaning that a more intense approach will be necessary to treat her or possibly even a bone marrow transplant.  

In the mean time, we would just like to say thank you for everyone’s help and kindness. We appreciate everyone that is reaching out to help in any way that they can.  We appreciate the thoughts and prayers.  We appreciate all of the delicious meals that people are bringing by, the cards, the well wishes and all of the love that surrounds us.  There are wonderful people in this world, and we are fortunate to know so many of them.  

I know that Tessa’s life has always been an open book.  Obviously we never knew leukemia would be a part of her story, but it is now.  Sometimes I cannot believe how much Tessa touches the lives of those who read her story.  In return, people want to help. Help comes in many forms.  Accepting help can be a hard pill to swallow.  At times it can be overwhelming.  Dan and I talked about the numerous offers that people have extended to us and how we handle it all. Unfortunately with the help comes the criticism as well.  Although we have yet to experience it first hand (thank God), we have seen it and we know it exists.  At the end of the day we have decided that if people care enough about us to take time out of their lives to make our days a little bit brighter during these dark times, of course we will let them.  We are battling cancer, not our egos.  With that, THANK YOU!  THANK YOU!  THANK YOU!  Thank you never ever feels like enough compared to the generosity from those around us.  But I hope one day, we can return many favors to those who need them.

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One thought on “Home days

  1. Becky, I think this was your best blog yet. You explain things so honestly and so well. I felt like i was sitting beside you while I read this. Holidays were a little lonely and weird for us last year also.

    Lucy and I are back at the hospital for more chemo next Friday, the 22nd. I will follow your notes to see how Tuesday’s results come out (lots and lots of prayers) and then see if you will be there when we are. Love you guys! Clarissa

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