Wednesday, April 29, 2015


Today was Macey's first day of having compression pump therapy with her physical therapist.  That brown wrap looks 20 times bigger than her leg, and the pump is then set on a level to help her lose the excess fluid.  My daughter sent me the picture and after looking at it, I realized it made my stomach hurt.  I did not want this to be one of her FIRST's in her six year old life. 

The hospital was able to buy the pump through the Susan B. Koman foundation to help with lymphedema sometimes experienced by breast cancer survivors.  It cost way back then $10,000.00 I do not think they were thinking a 6 year old would need it.  We are glad it is available.  Trying to smile.

Tonight will be Macey's first night of wearing this special three layer wrap on her leg to bed.  She is to wear it every night.  And then in the morning her compression hose during the day.  Another first.

Later, Kylei sent me a connection to another blogger who is in her 20's and has had lymphedema since she was 13.  I read a few of her posts, and my stomach hurt worse.  She talked about dating, and worrying, and infections, and shaving her legs, and everything that we do everyday without even thinking of a consequence...a dire consequence........stomach hurting.

When Butch and I first got together we used to comment after we had experienced something new together "well this is our first" and it was always a positive thing.  Today not so much.

One good thing about being a blogger is you can say it how you feel.  Either people will read it and go on, or they will comment ....they may even tell you to straighten up and stop feeling so bad, ....I do tell myself  that already, but my stomach still hurts.  And feels sad.  Not so brave.

Macey is very brave at 6......I want to believe she will continue with that braveness even though the grownups may struggle.  Cos she will have a lot of firsts around a lot of corners ....I believe she will handle them with grace. 

After I post this I am going to send an email to a blogging friend who's daughter is going through a much different battle, just to let her know I am thinking of them again today, ....that's what we do here in Blogville isn't it, even when our own stomach hurts.

Grandma Deb


  1. My heart hurts for Macey, but she will growing up getting used to all this, and won't think a lot about it... Kids are so resilient!

  2. It's OK to say what you are feeling - we are hear to listen although we do wish we could do more than that to help. Children are resilient, so Macey can deal with this now more easily than adults who can envisage what is coming ahead for her. The optimistic side of us says let's hope research makes a lot more of those firsts be more tolerable for her.

    Hugs and Woos - Ciara and Lightning and Mom

  3. I know Macey will be fine, I just lost my breath for a moment.

  4. We look at the expression on her face. We think she is teaching everyone a lesson.

    Your Pals,

    Murphy & Stanley

  5. Today is a Day of FIRSTS for You and for MACEY... the most important one is that Today is the first day that Macey has taken a step to improving her health and comfort.
    OMD how LUCKY that the hospital HAS that Machine.
    It all looks and sounds very SCARY... UNTIL one looks at that Angelic Face... with that BEAUTIFUL WIDE SMILE.
    THAT SMILE will sustain ALL OF US as we take this journey with Macey. AND we WILL be right there with all of you... through thick and thin.. the Successes and the Set Backs... and we WILL be able to SMILE because MACEY is SHOWING US THE WAY.

  6. Understand that first time stuffs.....good or bad one just has to do the best one can....hope this does the trick for Macey....we be doing some praying for this first time thingie!

    The Mad Scots

  7. Our stomach hurts for her too. Way too many first times. This is a great place to vent. And a great place to get prayers. God bless Macey

  8. Macey is a very special girlie, she'll sail through all these firsts don't you worry! And when you need someone to tell how you feel remember all us blogville friends are hear listening and ready with our virtual luffs and hugs!
    I agree with Ciara, Lightening and Mom, medical research is coming up with new and amazing treatments which I'm sure will help Macey in the future.
    Sending you all big luffs and hugs
    Loves and licky kisses
    Princess Leah xxx

  9. Yeah, it is a bummer of a 'First'. We understand the stomach upset. She is such a brave little girl....

  10. We totally agree with you.... What a sucky set of "firsts" for dear Macey. But as we've seen, she will handle all of this too with grace and a smile on her face. That's just who Macey is! A beautiful young lady who (unlike many of us adults) is braver than brave.

    Our stomach hurts over this too. Please don't feel you are EVER alone! We are ALWAYS here for you.

    Lily Belle, Muffin & Kim

  11. We are glad that you're honest, Grandma Deb. This is not easy for you and we feel for you and for Macey. (((hugs)))

    Love ya lots♥
    Mitch and Molly

  12. My heart and stomach hurt for her too ...but she is going to be OK! As others have said, kids are so resilient and strong. I think she is amazing. This beautiful little girl is surrounded by so much love with such a wonderful family and so many of us around the world sending our love and prayers for her and for you.

  13. It's amazing how brave kids can be when facing something like this - usually a lot braver than adults.

  14. Kids are a bit like dogs in tough times - they always seem to handle things way better than we do! Hang in there! xoxo

  15. I'm glad that you can say what you feel. I certainly understand that you don't want Macey to have to have these firsts... but I bet that girl will handle them with strength and grace that will make you proud. Big hugs to all of you.

  16. It is true, sometimes our firsts or the firsts of our loved ones are not what we would wish for them. It is always so hard. Life is an uphill battle sometimes. I hope that since Macey is young, this will be her normal, which may make it easier to deal with. She has a wonderful family who is going to help her too. That is a blessing.

    Thinking of all of you during this challenging time.

  17. This may be a bit off topic and long but I think you will get the message.

    When I was 5 my Mom got colon cancer. She had to have a colostomy. We just thought everyone's Mom had to spend 45 minute in the bathroom every morning with the time and the stinky thing. Mom never complained - it was just something she did and it was part of our household routine. No one thought a thing about it and Mom never complained.

    When we were growing older - we wanted to go camping in the WORST way. Obviously with 1960' campgrounds with outhouses at best - that wasn't an option. But Mom and Dad took us camping. They took another couple from church, and every single day, Jean and Lyle would stay with us while Mom and Dad drove 3 hours round trip so that Mom could take care of things, and get cleaned up.

    What I'm saying - is even the hardest of things can be made "normal" with the love and acceptance of those around you. Macey will get that and she will be a more wonderfully strong and patient woman as she grows to adulthood, for the experience. My Mom's lessons and how she made life normal for us, appreciating the SMALLEST of blessings have stayed with me a lifetime.

    Keeping you all in our thoughts and prayers.

  18. I hate that Macey is going through this but she is an amazing young lady and she will prevail. As always continued prayers for everyone.

    Aroo to you,

  19. Always remember new medical break throughs are always coming,,
    Macey will shock everyone as to how she handles this..
    Yes,, kids handle things better than adults..
    It will be "her new normal". Sometimes us adults get "new normals too,, and it takes us awhile to get into the swing of things.. But she will do it,,,, ! And new break throughs always coming.!
    We understand this is all so shocking,, for you to see,,
    but look at Macey,,, she is handling it like a princess!

  20. As her grandmother you just want Macey's life to be full of happy things. We know with the support from you and the rest of her family that she will do just fine. We are glad that you feel comfortable sharing all this with us and hope our comments help you and her.


  21. We're so glad the hospital had the pump. Macey seems to be taking it all in stride, though. She even looks a bit on the bored side.
    What a lucky little girl to have family that cares for her so much.
    Sending all of you lots of thoughts of comfort and prayers.

  22. Oh Deb ....... wish I could hold your hand!! My stomachs hurting too. Macey looks as if she's coping just fine. It's harder for Grandma's, aye?? Hugs!!!!!!!!! Love to you all ....... Lynn. Charlie's got nothing to say for once ....

  23. Howdy dear mates. Yep your stomach will hurt but darling Macey won't know cause we know you will have a smile on your face every single time you see her. We are glad she can finally have treatment to help. We are glad you can tell us how you feel so we can tell you we love ya heaps and are always here to support you all. No worries and love Stella and Rory

  24. Macey would probably say it the best. Everything is different through the eyes of an innocent child. To Macey this was probably looked at as a new adventure. Children often accept things that adults would never think of accepting without a fight. Macey is a very strong little girl and her smile alone will help you to smile too.

  25. We're glad you finally found something that's going to work! Go Macey!

  26. Gosh that poor little girl. We think of her often. Sending hugs
    Lily & Edward

  27. Oh stomach hurts for you...big virtual hugs being sent your way!

  28. I so agree with you ... a 6 year old girls should dream about being a Princess or Pcahontas while having fun and no sorrows... and your Macey has to go through so much treatments and has to see dogtors and hospitals.... that's not fair... I wish so much all sorrows would disappear over night and you never had to fear anything... hugs to you and your Macey ... she is much braver than adult peeps...
    easy rider

  29. I know it's hard to be the grandma wanting to help and protect Macey from everything. But my grandma always says that when she was raising Momma, she tried to remember she wasn't raising a little girl -- she was raising a future adult. Macey is learning how to be a STRONG WOMAN, and that is such a valuable lesson. Hugs to all of you for this difficult time you're going through!

  30. It is hard and having to deal with all the compression stockings will be hard - I know I have days where I just refuse to wear them because they are so darn uncomfortable and hurt. I am sure even Macey will have a few tantrum days too but she has a very very loving family who will see her through it.

  31. You're allowed to say what you feel among friends. Your heart hurts for your granddaughter and everyone understands. A warm {{{hug}}}.