Love and prayers

Yesterday was rough.  Over the last week, we have been noticing that Tessa just has not been herself…eventually realizing that it was time to call her HEM/ONC doctors. 

Her body was covered in petechiae, her mouth was bleeding with sores, her skin was pale, she was too weak to play and she was visibly in pain.  I knew she was symptomatic.

We took her to a local hospital for a CBC where we initially learned just how bad her numbers were just as we painfully suspected.  It was not until the children’s hospital called an hour later that our nightmare was about to become her reality. 

“Tessa needs to come in today.  It is clear that she has leukemia and that things are moving quickly.  Plan on staying for at least a week to start with, and we will go from there.” 

We knew this was coming.  We had nine months of trying to prepare for this day.  But never in one thousand years would it ever make that call any easier to receive.  Never. 

I remember this pain–that same pain that snuck into our lives before.  I remember how it rocked our world.  I remember how it suffocated us.  But I also remember that it never destroyed us because we were far too strong.  And today, even though my heart is broken, we are overflowing with that same strength and more.  And while fear is lingering, we promised her we wouldn’t give into it. 

We arrived around 4 p.m.  If anyone knows Tessa at all, then they know she is a sweet yet sassy diva princess, but she was a rock during all of the initial labs and all other things mandatory.  She was flirting with the male surgeon resident doctor and making best friends with the night nurse.  She is definitely helping to numb the pain because she is being herself.  She is amazing.   

Last night we slept little.  Tessa needed a platelet transfusion while she was sleeping.  Dan and I haven’t said much.  At some point in the middle of the night, curled up on my new twin sized couch-bed, I was ready to throw up.  Her daddy is keeping to himself, but staying right by her side. 

Tessa is scheduled for surgery this morning to have her central line placed.  She will more than likely get a spinal tap while she is under to rid the spinal fluid and fluid around her brain of hidden blast cells.  Today they will learn what kind of leukemia she has and move forward.  We will meet with the doctors to discuss chemotherapy, and she will begin treatment soon.

I will update as I can, probably without pictures for now.  We are learning as we go and getting all kinds of information.  Please know that she is doing well considering everything that is going on.  She is also in great hands.

Thank you for all of the love, prayers and support extended to our family during this difficult time.  We are so gracious for everything. 

She can do this and so can we. 

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15 thoughts on “Love and prayers

  1. I have a friend who is going through this with their daughter. She is three and has Down Syndrome also. If you would like I could connect the two of you. They go to U of Wisconsin for treatment. I will pray for your little one. Keep up with the positive thoughts.

  2. I work at UW, three blocks from the hospital. I’m there every day. Several MP folks work at the hospital. I needed help when we were hospitalized there and want you to know that I want to help you. I know how hard it was to ask, so please feel free to ask away. I’m praying.

  3. I get that familiar tightening in my stomache, while feeling your thoughts. It must have been a terrible time of anxiety during those long months of waiting for this time. I know you don’t want to be where you are, but at least you can now do SOMETHING! When I finally found out what Lucy had and treatment began, I didn’t feel quite as helpless. It throws you into a type of survival mode instead. It really helped to have a site to put thoughts into, I’m glad you have such a great knack for sharing already in place.

    I will follow Tessa’s story closely and continue to pray for all of you. I believe it helps. One conversation i had with a sweet older lady in our parish was about how when things were really bad with Lucy and i was taking each day (and night) at a time, i was doing a terrible job talking to God. You would think that would be when I would be on my knees the most trying every prayer i knew. I went weeks ashamed to say, without even a prayer. The sweet woman was very comforting and explained that when all our resources and energy are going to the situation at hand, that is when others around you do the praying for you. Thank goodness!

    The nurses on P4 are a blessing. They are the ones that are really with you when you need help. It was the times when they hugged me after a good cry or laughed with me at a break in the craziness. Lean on them.

    I don’t claim to know exactly what it is like to be you, but feel like i can offer some thoughts so that you don’t feel alone. It can be a very lonely experience (especially when things are bad at about 3 in the morning). Know that I have been there too.

    If you are still there on Friday of this week, would you object to a quick “hi” from us? I know it isn’t a great time for company, but would love to give a hug. Lucy will be down in Day treatment and Sedation for chemo.

    Thinking about you.

    Clarissa Cunningham

  4. Becky, I’m just seeing this and am crying for you guys. Sending so much love to that strong, beautiful little Tessa Bug and to her brave mama. Know that we live close by to UW Hospital, so if we can ever help in any way, just get in touch.

  5. Hi, my name is Sharon and my granddaughter Lily (almost 3) has Down syndrome and is almost mid-way through treatment for Acute Lymphocytic Leukemia. I just found you on FB and read a few of your blogs. I am dismayed to learn of Tessa’s leukemia and I want you to know that you will all be in my thoughts and prayers. I met you and your husband at the National Down Syndrome Congress Conference in Denver. I never made it back to your table to buy a book, although I had good intentions. Hang in there. This is a very rough road, but it is true – you are not alone. Tessa and you and your entire family will be in my prayers. May God bless you all!
    Sincerely, Sharon

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