Before our Laser Treatments in New York

On February 28th at Kaylynn's 2 week pediatrician appointment,  it was confirmed what started out looking as a bruise at birth had turned into a very serious birth mark.   At first,  all we were concerned about  was were we going to be able to get rid of it.   But it quickly became a possible very serious medical issue.   We were not sure what we were dealing with,  maybe a Port Wine Stain or Segmental Hemangiomas with Phaces.

First was to rule out all the possible serious conditions of Phaces,  Brain, Heart, Eye Sight Loss, Internal Hemangiomas.   After going through and MRI, MRA, Cardiologist, Ophthalmologist, and Hemangiomas Specialist in three days last week,   we have been cleared of Phaces.  That was confirmed yesterday by the Phaces specialist at Texas Children's.

Now we are left with a cosmetics issue (a big one *smile*) and months of treatment. Treatment is not easy, but we are counting our blessing we only have a cosmetics issue.

We have a hemangioma. Our treatment will be steroids to stop the growth and hopefully help reduce it. Then once that has happen and the skin is flat again – we will have laser treatments to remove the red marks. Even though the area covers a large area (the area you see in the picture, plus the back and side of head, neck)… steroids are very effective and lasers can completely remove it.

We are very thankful and positive Kaylynn should not remember or know any of this (except for pictures) by the time she is 2 or 3! We appreciate all your support and prayers. As this has been one of the most stressful and scariest times.

I have attached some pictures as you can see her hemangioma and beautiful face. . We can all learn and help others from this experience. The sooner you start to work on Hemangiomas the better. There are so many types and shapes. Some are harmless while others could mean a whole host of various syndromes.

Kaylynn is now 7 weeks old and 11 lbs. Being on Steroids has given her beautiful chubby cheeks and keeping mommy very busy with the breast feeding.

We saw Dr. Levy, Chief of Dermatology, from the Houston Children's Hospital yesterday. Kaylynn's hemangioma is not reacting to the steroids the way he would like it to, it continues to raise and get a darker red. So we are having to increase her steroid dose. Also, Kaylynn's blood pressure is high so we will go see a Nephrologist, kidney specialist, which is a side effect of the high blood pressure. We will probably start blood pressure medicine.

Larry and I are still counting our blessing that we aren't dealing with a brain or heart issue, but adding more steroids to our small baby girl with high blood pressure causes us grief. We have to stay on the steroids to prevent the hemangioma from blistering and bleeding and causing eye sight loss.

We are learning more about the steroids. Besides high blood pressure, it can cause cataracts in her eyes, and it has made her stomach really upset which causes her to now puke. We are taking reflux medicine to help with the stomach and acid. Kaylynn is a really good baby despite all these drugs. We will continue to spoil her with love and comfort. This is our last baby, so why not just hold her. :) 

Your continued prayers are appreciated. It is a lot right now, but Dr. Levy tells us she will be a normal toddler one day. We will hold on to that thought.

We will keep you updated as things progress. Happy Easter!

Today we saw Dr. Levy, specialist from Texas Children's in Houston. The steroids are starting to make some progress, but not as much as Dr. Levy would like to see. It was not bad news, but not great news.

When he first saw Kaylynn, he noticed right away that the steroids has made her "puffy". She is 11 weeks old and weighs 12.4lbs (50 percentile), but is really rolly polly from the steroids. So cute! It is so different from my skinny Reeve. 

Dr. Levy referred us to a blood and cancer specialist to get a consultation regarding a drug, vincristine. I know, first thing I thought, NO WAY with CHEMO DRUG! I've personally seen the effects of chemo. But he said as a parent and doctor he would listen to how this drug can help hemangiomas. 

We would not being using vincristine the same way that you would to treat a cancer patient, lower dosage, much less treatments. This drug could also cure the hemangioma which means less laser and anesthesia later. We are also having to consider the long term effects of steroids. Lastly, he is concerned about possibility of face malformation if we don't stop the hemangioma. Our other option is continue to use steroids to see how is reacts as hemangioma usually slow in growth 3-6 months of age.

As you can see, Larry and I have lots to consider and still to learn to decide. I ask you to pray for us to make the correct decisions for our daughter. I pray that we make the correct decision. 

Kaylynn is doing well. As the Dr. Levy put it, it is like giving a baby a double espresso every morning. So she jitters a lot and has trouble calming herself down. But not always, and I just soothe her when she needs it. Maybe if this vincristine drug could work, we can get off steroids and Kaylynn can be a baby again??

Larry and I know that we are blessed to be parents of two wonderful children, or a sweet baby and 3 year old "butt head" as daddy puts it. Gotta love the 3's. We remind ourselves "just keep swimming" as Dori says in Finding Nemo. We are getting better adjusted to having two kids and finding a rhythm. 

Love to you all,

Traci, Larry, Reeve & Kaylynn

...doctors do not always have the right solutions...

Hi all,

We went last Tuesday to see the Pediatric Hematologist and Oncologist. Vincristine does have less side effects than steroids use, but it requires a port cath be placed inside Kaylynn. Net, Net Steroids and Vincristine are both poison. Although, we have to use something to prevent growth of the "H" as we call it.

After not being able to sleep all night Tuesday night, I decided with Larry that we needed another opinion. So we used a great contact to get a hold of Dr. Milton Waner in New York. Hemangiomas are all he does. He has seen over 4000 of them and treats them daily. His patients and parents just love him.

From an initial email that we sent Dr. Waner with pictures and a history, he told us that he believes that we could treat Kaylynn with steroids and laser right away. He would not use the Vincristine yet. So we are headed to New York next Monday, May 14th to see Dr. Waner on the 15th and possible our first laser treatment on the 16th. 

I can't tell you how excited Larry are to meet Dr. Waner and get advice and treatment from the best. We wanted a doctor that sees these hemangiomas daily and treats them all the time. Let's pray that he can help Kaylynn so that we can get off the poison drugs quicker. We will still have a long road but maybe with less drugs.

We will update you after next week. Larry's first trip to New York too. :)