Thursday, April 16, 2015


I have had lots of questions about what lymphedema is....I copied this.

The lymphatic system consists of the tissues and organs that produce and store cells that fight disease and infection. They include the bone marrow, thymus, lymph nodes and spleen, as well as the channels that carry lymph.

Most of us know about the circulation system that pumps blood from the heart to the rest of the body. A significant number of individuals, however, are not aware that the body also has a second circulation system - the lymphatic system.

There is a series of vessels and glands (lymph nodes) that comprise the lymphatic system. They are spread throughout the body, in a similar way to blood vessels.

The lymphatic system has three main functions:
  • Fighting infection - the lymphatic system transports a watery, clear fluid full of lymphocytes. Lymphocytes are infection-fighting cells. The white fluid is known as lymph.
  • Draining excess fluid - after blood has circulated through tissues it leaves fluids and proteins behind; these are waste products. The excess fluid is drained through tiny capillaries and into the lymphatic system. After filtering out bacteria, viruses and other undesirable substances or organisms, the clean fluid is then returned to the blood. This filtering is done by the lymphatic system.
  • Lipid (fat) absorption - the lymphatic system also absorbs lipids from the intestine and transports them to the blood.
A disruption to the lymphatic system can eventually undermine its ability to drain fluid properly, resulting in excess fluid (swelling) in parts of the body. Patients with lymphoma have a higher risk of infection complications because their lymphocytes cannot reach parts of the body where swelling occurs. Cellulitis, a type of bacterial skin infection, is a common infection for patients with lymphedema.

Macey at two.

As a MOM of three girls, those three words were spoken several times in the "growing up years"....occasionally when they all get together I still here whispers of them in the wind....I am sure parents everywhere can identify with me.  Sometimes I think my three pugs would utter those three words at me if they could, but they find different ways to tell me "its not fair...."

Yesterday though I found myself listening to those words in my brain circle around most of the day, and into the evening.  I thought about my post today and I want to keep it positive, but then again, those words were the first thing I again thought of this morning.

Many of you --my family here in Blogville ---know yesterday was Macey's visit with her super duper smarter than the average bear Dr. Chen at the UNI of Iowa.  It was the first time I had ever met him, and I could tell he was very smart in his field and I could also tell he was feeling downtrodden when he walked into our room.

Macey didn't really notice because she was to busy talking and planning where we were going to her Mom and I did.

Here is a picture of your Lymphatic System.

Macey's picture from the bottom of her left foot to her knee
did not have any blue lines.  We were told Macey has Congenital Lymphedema, which means she was born without lymph glands in the lower part of her leg.  What was upsetting her doctor was because of that fact there would be no reason to do surgery (the one he specializes in) because there is nothing to reconnect and fix.  There is nothing there at all.

That is why her foot looked red after the radioactive dye test, because the dye could not travel up her leg to show area's of damage.
I asked him to repeat himself and explain what he had said at least two times, and then I just sat there rather stunned.  Her momma was much better at understanding this than me, and had prepared herself for this in case it was this type of Lymphedema.  Not me though, I am a fixer, and apparently Dr. Chen is a fixer also, so we were both bummed, and stunned, and angry. 

Not Macey though, she was just trying to figure out what kind of pancakes she was going to share with her sister at I-HOP.

He explained because she is only six and this is a chronic life long disease his goal right now is keeping it at this size, and being able to manage her comfort.  That will include physical theory, massage treatments that later her mom will learn and be able to do at home, and compression garments on her leg.  Ugh.  We will also have to monitor her exercise to see what makes her foot worse, and what helps it.  She is an active 6 year old, this will be  He did stress that she always wear some sort of shoes so she does not cut her foot etc. because of negative factors.

The downside is this is a rare disease in children (we were told 19 children in 10 years statistically) so there are few medical personnel that know how to work with a child with this disease.  Yesterday we were told there were only two PT people in Iowa that work with Lymphedema adults, and no one that works with children.  The dr. said because Macey is so young he is hopeful that research will come up with medicine etc. within her lifetime to help control it better etc.

After we got home yesterday Macey's mom called the pharmacy to talk to them about her compression hose, our local pharmacy basically told her they could not help her, and suggested she call another pharmacy further away that deals with breast cancer survivors she did, the woman at first would not believe that a 6 year old needed this, until Kylei told her she has the prescription for them.  So Macey is going in on Friday to be measured.  It will take approx. 10 days to receive it, and for one hose it is $100.00  She will probably need more than one, cos I know she will be getting them dirty.  She will wear it from the morning time until she goes to bed.  She will probably handle it better than her grandma.  I was trying to think how to pretty them up.  One color, drab tan.  ugh.

Her mom is going to meet with the local dr. and suggest she contact Seattle Children's Hospital since they are one of the few places in the US that actually have a program for children with this disease.  I would think the PT people could contact them also.

The first thing her Momma said when we got back to the car, was that there are much worse things in the world that a child could have.  I agree, I know there are families here struggling with hurting children and adults and my heart goes out to them.  So we are looking for the silver lining, we know there is one, we just haven't found it yet.  We will.



  1. Oh dear but you both right to be positive and we so hope therapy etc helps. Love and hugs.
    Have a tremendous Thursday.
    Best wishes Molly

  2. I hope this silver lining appears soon and you will find it and I hope this silver lining stays with you... Please give Macey a BIG hug, she is such a brave girl, even adults can learn a lot ...and I hope the PT makes it much much better...
    easy rider

  3. After such a long time of nothing but worry, at least you have answers now. It's hard enough to face such a devastating change in an adult child's life (as we have had to face with Shelly), but Macey is only 6 years old. I cringe whenever I hear the words "no cure" come out of a doctor's mouth. We've heard it so much lately. But Macey should not be facing things like this. I pray they do find a cure for this for Macey. Again....sending lots of prayers that she will be able to live a completely normal life.......even with the "funny" socks!

  4. We aren't sure our comment went through because Mom wasn't signed in. But any way we want to agree that it is SO not fair. But as Molly said hope is paramount. There is so much good being done in the medical field. Maybe the folks in Seattle will be able to offer some suggestions for PT, maybe some videos. Mom was thinking you could dress up that compression hose with some pretty garter-type anklets - you know change them by season, holiday, girly things, different colors, patterns, etc. Bet she would love that too. She is very lucky to have such a wonderful Grandma like you. We hope the future holds good answers for that sweet little one and her family.

    Woos - Ciara and Lightning

  5. So NOW we KNOW... and have the KNOWledge needed to move FORWARD. Of course we wish NONE of this had happened... butt as Macey's mom said.... THIS is not the WORST thingy that could have been found. THAT is what we all need to remember... it COULD have been MUCH worse.
    So plans are being made and things are being thought through. KNOWLEDGE is POWER...
    Is there anything that WE here in Blogville can do to HELP?

  6. Wish I was there to give you luffs and hugs in person.
    Yes, be positive, think like wonderful Macey!
    Medical advances come along in leaps and bounds these day, I'm sure there will something to help Macey appear in the near future
    Lots of loves and licky kisses
    Princess Leah xxx

  7. Finally - an answer. Isn't it amazing how positive and resilient children can be, especially when they have a family full of love and support for them, like Macey has. Now things can move forward with treatment and PT.
    Hugs and prayers
    Mr Bailey, Hazel & Mabel

  8. We are so sorry to hear this. You are right, there are children and families dealing with worse but that in no way will help dilute the pain of dealing with the news affecting someone you personally see, touch and love. It is not fair. No way! But, it is what it is and now it's time to circle the wagons and give Macey the help and support she needs. And maybe the first thing should be to get those pancakes figured out. Prayers to you all.

    Your Pals,

    Murphy, Stanley & Mom

  9. Dear is SO NOT FAIR in the largest sense of the word.
    I guess this is a silly question but wonder what made this disease show itself after 6 years.? Children are so resilient. They take their cues from adults around them so as everyone has said...we'll rally behind that sweet precious child!! Lots of hugs to you all and you will remain in our thoughts and prayers every single day.
    We weren't signed we posted again too!!
    Hugs madi and mom

  10. I am so sorry to read that no treatment is available. Many years ago I had a radical hysterectomy that involved removing all the lymph glands in the groin and as a result developed lymphedema in both legs. Mine is classed as moderate but I know how much I hate seeing puffy and swollen legs and it played havoc on my self esteem. It is going to be tough on this little one too but she has one huge advantage - a loving family that will be there no matter what. As for the compression stockings look around online - you can find very goods one available that do not cost a fortune even in her size - and I have found them to be so much more comfortable than the prescribed ones.

  11. I happen to think her grandma can bling those darn support hose up pretty good! She'll be glad to wear them! You will all learn to cope with this, and Macey will keep smiling her beautiful smile!

  12. Hi Deb,
    Well this is a bummer, for sure. But Kylie is right! There are many more diagnoses that are much worse and definitely dire. Take comfort that now you know what you are dealing with - and you have a team to help out. Your doctor, the team in Seattle, and anyone else you are surely to find along the way - all of them will help Macey learn to deal with this and lead a normal life.
    As for prettying up the socks - Have Macey paint a design in acrylic paint that will last and will reflect her personality (check with pharmacy first to see if possible). You might even look for the manufacturer and see if you can get them to make child sizes or prettier designs. You might be surprised how excited they get at this idea.
    Love Noodles and Mommys

  13. heavens, what a trial ya'll have been through! So happy that you have an answer, but your right - it's not fair that it's an answer that doesn't have a solution. Maybe a tiny silver lining is that dear Macey gets to have prescribed massage treatments? And hopefully the folks in Seattle will have some good suggestions and maybe new research on ways to treat it. We are sending virtual hugs your way, Deb!

    Edgar and his mum

  14. My niece has had lifelong lymphedema in her leg. So many specialists and never had any answer. She is now 22 and has managed it well, so far. She is now in college for veterinary medicine.
    We'll be purring and purraying for your sweet Macey. Chances are she will handle this much better than Mom and Grandma. Sending lots of love to all of you.

  15. There are answers now and that is the silver lining, We agree with everyone and what Muirphy said, to circle the wagons,,and get it going.
    Macey has a great attitude,, and you will be surprised how kids can handle stuff..
    Everyone has something,, is what we always hear.
    Check out some of the childrens hospitals,,, they have programs for free stuff,,,, maybe those stocking!., Yes,,paint them,, put tatoos on them!
    Macey is a good example of "getting on with it" I wish we can follow her example,,

  16. No, this isn't fair. Macey is way too young but at least you know what you are dealing with. Our dad has lymphedema and yes, he does wear the compression pants and 2 stockings every single day and he stays very active and does everything that he wants to do. He finds that swimming helps him out a great deal. We bet that Macey will deal with this just fine in time.

    Love ya lots♥
    Mitch and Molly

  17. So sorry to hear all this and I are sendin all of y'all big hugs and sendin Macey some speshul westie kissies. I's always luved lil girls, dey are some of my favorite peeps.

  18. Been told to relay this to you..
    When my mum was a little girl, even younger than Macey, she used to think, you never know what is around the corner, she still thinks that....... Mum, even now, never gives up....... Macey isn't a giver up a either. Mum can tell.
    Luvs and luvs and luvs.
    Freya Rose Blossom and her mum x x x

  19. Deb, I'm so sorry that news wasn't good; but like you said, Life isn't fair. Please know I'll continue to pray for divine healing for Macey.
    Maybe you can get some lace to pretty up those socks.

  20. How disheartening. We were so hoping that there could be a quick fix, or an easy maintenance. Glad her mum is being optimistic and going to research....good for her.

    Hope Macey enjoyed her pancakes.

  21. She is just an angel and I know there are angels watching over here. This burden and your journey will be one of tears as well as deep faith. Never hesitate to just let it out when you need to, we are all here to listen.

    Dr. Lin (Abby the Lab's Mom)

  22. Kids are pawesome and pawsitive individuals. I believe Macey and how she will handle this is your silver lining.

    Aroo to you,

  23. We are sending you all hugs and Boxer kisses and POTP. I have FAITH that Macey will do well and improve and live a very long happy life even with these problems!

  24. Crikey ..... After all the waiting you now know. That's a bit of a silver lining, aye?? Dear little Macey ...... what a wonderful attitude she has. Sounds to me as if she will cope with whatever is thrown at her. Hope she enjoyed lunch and I can't wait to see pics of her stockings. We will never stop thinking of her. Our love to you all!! It could be worse ...... MUCH WORSE!!

  25. Angel Pip and Ruby's assistant here ..When I was a little girl we faced some very rough times, my dad didn't live with me and I loved and missed him dearly. I would talk to him once a week on the phone and sometimes would be very upset ...this is what he told me and I have carried it with me my whole life especially when things are difficult, painful or scary. My dad used to tell me "just remember, when everything is uncertain, anything is still possible" meaning there is ALWAYS hope and sometimes all we can do is just believe, have faith, and hang on. I believe everything will be OK for Macey. She is strong, you are strong and you will ALL be OK! XOXO

  26. We are sending healing and comforting purrs to Macey and we has our paws crossed a new medicine/treatment will be discovered soon.

  27. Poor kid, thank goodness she has you and the rest of your family for support. I'm sure you make things much better, just by being you.