Sweedish Medical Center

This last trip to Colorado was a bit different than it has been.  We weren't able to keep our scheduled appointment for May 2 because of some work conflicts with Ben, so we had to move it up to April 21.  It was nice to get it done sooner and have a larger break in before the next, but it was still a pain as always.

After the long drive and backache we were to our hotel.  Gabi requested of course for a night of swimming.  So that is exactly what we did.

Preparing for a second entrance into the pool.

Fancy walk and wave around the pool.

Picture with her swimming partner and daddy.

Swimmer

Perfecting her backstroke.

After an hour of swimming we ate some dinner and got ready for bed.  The next morning was upon us before we knew it.  I was wanting to ask the doctor some questions that I really wanted answered.  I feel like any time I ask a question I get the same round about general answer, that doesn't answer my very specific question.  I had a plan that I was going to dig until I got an answer, good or bad; and that it exactly what happened.

Gabi waited very patiently and calmly as she was admitted and waited for the long process of paper work and meeting with everyone before treatment.  She's been understanding her treatments a bit more each time and she really has a special way of preparing herself for each one.  I try my best to help her feel comfortable and at peace, I try to calm her fears, but my tactics are nothing to her sheer faith and determination.  She truly is the one that makes Ben and I feel better, not the other way around.

This treatment was unique in how she decided to change her thoughts and behaviors to cope better with the process.  We went back into radiology where we always go for sedation and treatment.  She asked my to wrap her in a blanket and hold her while I put the mask on.  The Anesthesiologist asked her if she wanted to go to sleep slow or fast, She got a bit upset and said, "FAST!" She grabbed the mask and held it to her own face and began to cry.  She held the mask tightly until she was overcome with the gases and fell asleep.  I was a wreck!  I have never cried so hard when we have done this is the past.  I am the one that holds her hands down as she tries to fight the mask, I am the one who holds the mask tightly to her face as she looks at me with those pleading eyes to stop, I am the one who tries to reassure her that everything will be okay.  I hate it. This time I felt like she even wanted to take that pain from me when I feel like I am betraying her for holding the mask until she can fight no more.  Gabi is so strong and has so much courage.  I cried for hours thinking of her holding that mask to her face, she knowing there was no other way to be done with these treatments than to go through the darkness into sedation each time.  It's frightening for her, and she's so scared each time.  She has so much power over her fears and I wish that I could express it better.

After her treatment we received a call from Dr. Yakes that she was out of treatment and going into recovery.  I had Ben try to get as much information as her could about her progress, and anything.  As Ben grilled him on the phone we got some news, and not the kind we were hoping for.  Sometimes the information you want the most and fight for the hardest is going to be the one you don't want to hear.  Dr. Yakes informed us that Gabi has two birthmarks, one on the upper cheek and the other on the lower. These two entangle themselves causing it to look like one.  He informed us that the one is a more aggressive form of a Venous Malformation called a Globalmagioma.  This one is putting up a great fight and is growing as fast if not faster than we have been able to treat it.  This means that her treatment this time and from here on out will all have to be at a much greater level of aggressiveness.  She received 16ml of alcohol, which is 6ml greater than she has ever received.  The only good side to this information is that she is growing bigger and getting older, allowing her to be able to receive greater amounts of alcohol without receiving alcohol poisoning.  It was hard to hear, but I am glad that we at least know what we are looking at.  It's hard to have blind hope of an end when there is no real vision of that light at the tunnels end.  We still can't see that light but we have hope that we will in time.

Gabi recovered very well and is doing great.