A Very Merry Christmas for Kayla!

12-28-2016

I hope everyone reading this had a joyous Christmas surrounded by family and friends and those that you cherish the most.  This Christmas, for our family, was a wonderful, chaotic, loud, mess of laughter and a lot of relief.

Kayla gets extra kisses this Christmas from Grandma!

The fund to assist Cassie and Sean's expenses has been open for just one week.  It has generated an amazing $5800 in donations!  We are blown away, that is not an understatement!  This response, along with the well wishes and prayers has give Cassie and Sean the ability to focus their attention on Kayla and their other children, Carter and Ethan.  How can we possibly thank you all enough?

 Along with the surgery planning there has been another unnerving development.  Kayla has been recently Kayla tested for anemia after her hemoglobin came back low.  The anemia test came back negative so there will be more testing to determine what is causing the hemoglobin to be lower than normal.  Hopefully it is side affect of the malformation or a 'normal' hemoglobin level for her.  We will keep you posted on that but we need even more prayers for Kayla to get a normal reading.  This will not affect the surgery date, but it does adds more worry for everyone... except Kayla!

Kayla is not worried at all... here she is chilling on Christmas Morning on her new sofa!

We plan to keep the gofundme account open at least until Kayla returns from New York and we have a more definite idea of what she will need going forward.  There is a hope that any and all follow up needed can be done with Dr. Waner at the VBI.  We will not know the whole scope of what she will need until Kayla is there in their care. 

I would like everyone to know the gofundme account and the 5/3rd account will be used for travel and medical expenses only and in a fiscally responsible manner.  Just want to put that out there because it is a lot of money and we are so grateful for everyone who has contributed.

Kayla was not very courageous when she visited Santa but she still gets her Christmas wish!

We are just 20 days from surgery!  We cannot wait to give Kayla this new lease on life!

Thank you again from the McDonald and Breadon families. 

If you would like  to contribute to the Kayla Takes NYC fund visit: https://www.gofundme.com/courageous-kayla-takes-nyc

Bear One Another's Burdens: Galatians 6:2

12-19-18  Bear One Another's Burdens: Galatians 6:2

Here is the link to Kaylas GO FUND ME

 https://www.gofundme.com/courageous-kayla-takes-nyc

You can also go to any 5/3rd and contribute to the Kayla Breadon account.

So the last few day have been a flurry of planning and waiting and deep breathes.  Then yesterday I got this message in my email and went into a *little* panic....

27 days!  26 now since I did not get this blog out yesterday!  Cassie has been working full time and trying to plan this amazon of a trip during her 45 minute lunch break.  Making calls to the doctors office in New York, the Cincy pediatrician, the Cincy ophthalmologist, the Cincy Children's Doctor, all trying to coordinate the treatment so we are all on the same page.  

None of this craziness seems to be affecting the Courageous Kayla!

Then there is the big elephant in the room, paying for all of this!  Cassie works full time and is blessed to have a very good insurance policy with the City of Florence, KY.  We believe (hope, pray) that her insurance will cover the entire surgery and subsequent 7 day stay, but no one has been assured of this yet.  Cassie met her deductible months ago and it 'resets' again in July.   The downside is her sick and vacation time also ran out months ago also with her maternity leave and Kayla's appointments, its been a busy 10 months!  There was some discussion to wait until July so Cassie could take more paid time off to be with Kayla during her recovery but with the Amblyopia threatening Kayla's vision Kayla's doctors decided that waiting is not an option.

This leaves the travel, stay, incidentals and time off as a major financial burden for Cassie and Sean, who both work full time to support their family of 5.  That is where my panic set in.  It had become clear that we need some help.  We have 26 days to prepare Kayla, Cassie and Sean for the surgery that will hopefully change her life forever, and we need some help to get there.  We have decided to reach out to family, friends and the community to get some help.

My daughter, Anna, found this and sent it to me as guidance.

Here is the link to Kaylas GO FUND ME

 https://www.gofundme.com/courageous-kayla-takes-nyc

You can also go to any 5/3rd and contribute to the Kayla Breadon account.

So here is where we are now as of today.... Flights have already been paid for by Cassie's family.  Cassie and Sean are booked on Allegient to New York on January 16 for the consultation on January 17.  The surgery is on January 18.  The New York Doctors want Kayla to stay until the following Wednesday January 25.  Cassie and Sean are on the wait list for the Ronald McDonald House but in the meantime we have booked them into a hotel within walking distance to the Lennox Hospital and the Vascular Birthmark Institute on 64th street. Mom and Dad will travel to New York on Saturday the 21st to help with getting Kayla home and settled in.  If everything goes as planned, Cassie will need to be with Kayla at least one additional week after returning home.  This leaves her with 3 weeks of missed work.  Sean will miss at least one week.  Doing all the math and keeping fiscal responsibility in mind we believe we will need at least $4,000 to ease the non-covered related expenses. 

Carter, Sean, Cassie, Kayla and Ethan!

So this week we began a Go Fund Me account and opened a 5/3rd account to collect donations for this effort.  If you are able to donate or share to help with this please do!  This is not an easy thing for any of us to ask for, and we appreciate everyones prayers, concerns and messages!

Cassie and Sean have not said too much about Kayla's condition.  She has not posted many pictures of Kayla due to the well intentioned questions that come with photos... She is basically very overwhelmed right now and has mixed feelings about asking for financial help, but here is a message she posted yesterday...

I know I have not said much since Kayla was born about her lymphatic malformation. I was praying the doctors were right when they said it was just fluid. After many tests and no forward progress we looked for another answer. We made the decision to take the trip to New York to keep Kayla in good hands. We are praying to have the lymphatic malformation removed. Dr. Waner has preformed miracles on many children. I can only pray Kayla will be the next miracle. I want to thank everyone for your support. Your prayers are the most important. They mean so much to all of us!   Gratefully, Cassie, Sean, Ethan, Carter and Kayla

Here is the link to Kaylas GO FUND ME

 https://www.gofundme.com/courageous-kayla-takes-nyc

You can also go to any 5/3rd and contribute to the Kayla Breadon account.

Please Share!!

Nothing but THE BEST!

When I first googled "Lymphatic Malformation" I was overwhelmed at the photos and stories and results. No known cause, no definitive treatment, no reliable results. The photos are very upsetting. Most often LM are located in the neck and cause significant issues with normalcy like eating and breathing. We had, for all intents and purposes, "a good case". The actual growth is painless and Kayla was unfazed and was progressing normally.

Kayla with her Brothers Carter and Ethan 

As the LM grew it began to affect Kayla's eyesight and it became clear that difficult decision were going to need to be made sooner than later. The doctor Cassie and Sean were referred to, Dr. Patel, at Cincinnati Children's, performed the two sclerotherapy treatments. Dr. Patel is a specialist in many things pediatric, one being pediatric vascular malformation and hemangioma. These may sound similar but they are definitely not! Children's has seen LM, but does not currently have a specialist for this specific issue. After two sclerotherapy treatments with poor results Cassie was advised to begin oral sirolimus, a drug that has shown good results in LM patients. The scary down side is, the drug is fairly new, there is not extensive data on long or short term use, and if it did work, she would be on this medication for the rest of her life. There was hesisitation in removing the mass and Dr. Patel would not be the surgical doctor for any procedure like that, Cassie was given an option to follow up with a Pediatric Plastic surgeon. After that meeting, Cassie decided to get another opinion with led to the call to the international leading specialist in the treatment of Pediatric Lymphatic Malformation, Dr. Milton Waner.

Dr. Waner's name is at the very top of any google search for LM. He also seems to be attached to all of the amazing before and after photos online! He founded the Vascular Birthmark Institute (VBI) of New York and is internationally renowned in the treatment of Lymphatic and Vascular Malformations. He is also known for the difficult cases he takes on, like this crazy story of a teen from Morocco who had been give up on: http://www.wcax.com/story/30803387/ny-hospital-helps-teen-facial-transformation.

When I suggested to Cassie she go to New York for an opinion I think it seemed to her, over the top. Why travel to New York when we have such an amazing Hospital filled with well respected doctors here? Well, If you read about Dr. Waner and the work they do at the VBI you will agree this is where you go if your child needs help with LM. So last week Cassie made the call. The VBI asked for photos of Kayla, one of the attending Drs., Dr. Teresa O returned Cassies call a day later and for the first time Cassie and Sean heard the words "We can fix this". WE. CAN. FIX. THIS.

Here is Dr. Waner (left) and Dr. O (right) operating on a little boy from Britian who has not options left for him in the UK. See his before and after photo below!



Dr. O went on to explain that before sclerotherapy could be effective, the mass would need to be 'debulked'. De-Bulking is the removal of the mass via ultrasound guidance. And with a lot of good fortune perhaps removal will be the end of journey! We can only hope and pray.

Earlier this week after Kayla's last ophthalmologist appointment Cassie reported back to Dr. Patel the intention to travel to NY for the de-bulking surgery. Dr. Patel supports the decision, he is familiar with Dr. Waner and the VBI and their reputation in this field. Dr. Patel is going to be working directly with them for the follow up and post surgical treatments needed. It is quite a relief to know Kayla still has her team at Children's working on her side.

Kayla about 6 weeks old 

Dr. O's words have, for the first time, put Cassie's and Sean's mind a ease, even just a little, that Kayla will have a normal happy childhood. So now we will work to make it happen.... stay tuned!

XOXO! Aunt Connie

one more thing I have to say... I mentioned the teen from Morocco and the toddler from Britian... it has not been taken lightly or overlooked how blessed we feel to be working citizens of the United States of America where we have the fortune and means to find the best medical care in the world for Kayla.

The Courageous Kayla!

Hello Friends and Family, 

This is Aunt Connie, Cassie's big sister, Kayla's (favorite) Aunt.  I am starting this blog with Cassie to have a central place to keep Kayla's enormous circle of loved ones informed of her condition as she progresses and she goes through this journey.

What "condition"?  What "journey"?  you may be asking these questions... or the most pressing question we get... "What happened to her head??" So lets get right to it....

Kayla was born with a condition called Lymphatic Malformation (LM).  It's rare.  Like most people, you probably have not heard of this condition before.  And although the Doctors noticed a 'squishy' spot on her forehead, Kayla looked perfectly normal at birth:

Lymphatic Malformations result from abnormalities in the development of the lymphatic vascular system during embryonic growth, it affects boys and girls equally, no one knows why it happens in approximately 1:4000 live births.  There are two types, macrocystic and microcystic.  Macrocystic and microcystic lymphatic malformations are differentiated by the size of the fluid-containing portion of the malformation. The macrocystic type is made up of large cysts, more than 2 centimeters in diameter; the microcystic type is made up of smaller cysts or soft tissue enlargement without cyst formation. Most lymphatic malformations have both macrocystic and microcystic portions and histologically there is no difference between these categories.  

Kayla's condition is believed to include both types, making treatment difficult.  Sometimes LM are a condition of a larger syndrome.  Thankfully, that is not the case the case with Kayla, she is a perfectly normal, healthy, happy, feisty little girl.... just with a big bump on her head!  

To read more about Lymphatic Malformation you can visit here: https://rarediseases.org/rare-diseases/lymphatic-malformations/

So how do we treat LM?  Why don't they '"just remove the bump"?  Unfortunately, it's not as easy as it sounds.  Because Kayla is young and healthy, and LM is complex and rare there are just not a lot of proven effective options or specialists available.  There is a lot of experimentation and poor results. And until recently Kaylas malformation was considered "simply" cosmetic.

For Kayla, she was not diagnosed until she was 4 months old.  Her "bump" initially considered to be swelling from labor and birth but continued to grow as she grew.  Like I said before, other than this bump, she is a normal developing, happy, healthy girl.  We kind of all held our breath hoping it was going to just go away! Here is Kayla around 4 months...

At Kayla's normal 4 month check up, Cassie insisted the bump, which had grown but was not yet affecting her eyesight, be investigated.  An ultrasound confirmed a LM.  Since then, over the past 6 months,  Kayla has been through two treatments of sclerotherapy.  This involved putting Kayla under general anesthesia and injecting the individual overgrowing lymphnodes to create scarring which eventually will hopefully collapse the malformation. There is a period of healing then a period to gauge its success before a new plan is made. Here is picture of sweet Kayla after the first sclerotherapy...

and the second...

Unfortunately, as you can see, sclerotherapy has been ineffective for Kayla's malformation and it continues to grow as she grows.  Recently her ophthalmologist has determined her blocked eye is beginning to develop Amblopia.  Cassie and Sean have been instructed to patch the "good eye" so she will work harder to use the eye being blocked by the malformation.  A frustrating but necessary ordeal for both Kayla and Cassie and Sean and everyone who is involved in her care.  Kayla has become pretty efficient at tearing off the eye patch!  This diagnosis has made seeking a more aggressive treatment of the LM more urgent. 

So that is where we are as of today.  Thank you for taking the time to read this.  

Tomorrow I will send an update on an exciting but frightening and unnerving option that we are pursuing.  Cassie has been steadfast and determined to find the best solutions for Kayla long term.  At only 25 years old, working full time and taking care of her family, she is doing an amazing job.  I hope she knows how lucky Kayla is to her her as a mommy.

You can send any messages directly to Cassie at courageouskayla@gmail.com.

Much Love for all the prayers and concern for Kayla,

Connie