Well we're back after her big MRI and appointment. First off:
Like the Doctor told me - You dont' need to be a radiologist to read these pics. Top=BAD, bottom=GOOD
I absolutely want to break down every time I see that top pic. How she had room for all of that in her little body I will never know. And never once complained of a belly ache. We have much to be thankful for.
We also met with the vascular anomalies Dr. Again, it was a bit of a rollercoaster. She is doing phenomenally. She was officially diagnosed with Mixed Lymphatic Malformation. (the mixed part is a combo of macrocystic and microcystic) It's good news because it's essentially a benign condition, but it can and from what I've been reading will most likely reoccur. Just a question of when. Could be 5 years, could be 10 years, could be pubery, could be when she gets pregnant, could be tomorrow. We just don't know. And that is hard for me.
I'm going to also copy and paste part of an email I sent him after I got home. Some questions came to me after the appointment and I read the materials he sent with me and some I didn't want to ask in front of the girls (Annie and Cassidy were with me). Intellectually I feel good about the email, but my Mama heart only sees that one line "yes, this condition has the potential to be life-threatening" *sigh.
That being said, my Cassidy was hard to come by (we had fertility issues and she is a MIRACLE baby but that is another story) and I think she's here to stay for a long time. I know that I will be living life a bit differently. There will be more pictures, more cake pops being made at 9pm, more giggles, more yes's, less no's, more dancing in the kitchen, less cleaning, more movie nights, less Candy Crush, more DQ runs, less yelling and more sidewalk races. I'm just so sorry that it took this to open my eyes to what I was missing with my kiddos. (not that they had such a horrible life - lol, but I wasn't LIVING like I should have been.
Here's that Q&A letter....
1. The first question that I have, just so I can know what Im talking about What is the name of what she was diagnosed with. I was told Lymphangioma, but in reading some more, I have found that is an old name? Is the correct term now Lymphatic Malformation?
Yes.
Lymphatic malformation, mostly macrocystic, but some microcysts so Mixed
Also, would you consider hers fairly benign or more complicated?
It's certainly benign in that it's not cancer. If it flares up again, then I'd say it's more complicated
2. Which brings me to my second question Is hers more than likely always going to appear in her abdomen.
Yes
Can/do these malformations end up showing up somewhere else?
No
I see that some have bone, heart and lung involvement, but do they usually present with them there or do they migrate?
Usually present with them from the beginning
4. She is mildly anemic all of her other blood work was fine and her hemoglobin wasnt even low, but she had an iron ferratin test done in June before all of this happened and it was found that was a bit low, but her red blood cells were slightly pale and smaller. I apologize profusely for not bringing this up yesterday this was one of the questions I really wanted to ask as her dark circles have come back a bit since her surgery. Is this anemia tied to her Lymphatic Malformation directly, or more so a result of where it was located and interfering with her nutrient absorption? Is this anything to be concerned about or will clear up now that she is eating well.
Her blood counts here in September were normal, actually her hemoglobin was at the upper end of normal at 13.1 and her red cells were normal size and color. From her results in September there is no concern for iron deficiency or other nutritional issues
5. I know you talked about this also, but after reading the literature I wanted to ask. Does she have any other venous, or arterial abnormalities. Other than her Lymphatic malformation, is she healthy?
No other abnormalities that we are aware of.
6.One thing that caught my eye was on the Rapamycin paper it said that Patients must have vascular anomolies that have potential to cause significant morbidity. In addition to the above diagnosis, one of the following criteria should be met: Coagulopathy, Chronic Pain, Recurrent Cellulitis, Ulceration, Visceral and/or Bone Involvement, or Cardiac Dysfunction.
Does, can, will she meet the above?
She does have visceral involvement (abdomen/pelvis) but she's not having symptoms right now.
Bottom line Is her condition life-threatening or have the potential to be?
It certainly has the potential to be, but I think she's at lower risk than our patients with lung/heart invlovement.
Also, and I apologize again, questions I should have asked in office is there anything we can do day to day to help keep this in check? Special diet, etc.?
The daily celebrex should help. There is no special diet or activity that is known to be helpful
I hope I addressed all of your concerns.
Director, Hemoglobinopathy Program
Co-Director, Vascular Anomalies Clinic
Children's Hospitals and Clinics of Minnesota
2530 Chicago Avenue South, CSC-175
Minneapolis, MN 55405
Thanks for following us along on our journey - I don't know what the future holds other than a Disney Trip in January (which he saw absolutely NO problem with
) I will definitely have to try and do a trip report for that one - I'll have to come up with a really good title for that one
We went in May a few years ago and our whole family voted to go back to January for both crowd and temperatures. I will admit that there have been a few evenings that were downright cold and I had on my winter coat and gloves while walking around Epcot but it's still our very favorite time to go.
That must be heartbreaking to see the first one with all that abdominal involvement. And to know that she is doing so well, I suppose that is one of the reasons that you'll be having more DQ runs and dance in the kitchen!! 
