New News

We just finished treatment #27.  This time around was a bit different in the fact that we took Baby Vi with us.  It was her first long road trip with us.  She was soooo good!  She is the baby you want to take on road trips.  Gabi was excited to have her little sis come along.  It helped ease her anxiety.  

We made decent time to our hotel.  Ben took Gabi swimming while Vi and I watched.  We all got to bed pretty early, our lives are on a bit different schedule with the baby now; but it was great.

Morning came early as usual but both girls were troopers.  It helped Gabi to have baby Vi there to take her mind off everything.  She was more concerned about holding her and loving her than what was coming.

I held her as I do each time she goes under general anesthesia.  She has been doing so well with it the past few treatments.  She just grits her teeth and squeezes my hand until she is overtaken by the drug and slips into a deep sleep.  Ben stayed back at the hotel with Violet while I stayed in recovery with Gabi.  The past few treatments have made Gabi pretty nauseous even into the next day.  It makes her sick and she's not able to hold much down.  We called the PA Kelly, and she got a prescription called in to a pharmacy along the way home.  Once we had her take some she was night and day better!

When Dr. Yakes was done with this treatment he gave us a call as he does each treatment to let us know how things went.  The conversation is pretty short, mostly, "She did great, I used X amount of alcohol, she'll be in recovery in 15 min."  That is about the extent of our conversation.  Well this time he added an exciting statement.  "I am having a difficult time finding areas to treat, I would like her to have an MRI next time."  That was so exciting for us to hear.  I know it's not much in the fact of knowing when or how much left, but that can only be good news...right??  Well I guess we will find out in another 6 weeks.

2 weeks after this treatment she drew this picture and wrote about her feeling.  It says, "I don't like Colorado because of the doctors.  They make my cheek big and fat."  

Oh how I long for the day we are DONE!

Gabi's words

I am the bravest girl of anyone. If anyone goes there to Colorado they won't be brave as me.  Gabi is the most brave girl on Earth.  I really like to be at Colorado cause I can go swimming and I love to go to the treatment.  I really wish that I can go swimming every day at Colorado.  It's so much fun to swim cause I can jump off of my dads shoulders.  I really like to do that, from Gabi, Gabi's Blog.

Twenty-Fifth

The 25th treatment was great.  The drive was long, hot, boring, and uncomfortable, but nonetheless we arrived without incident or injury.  I believe what made this treatment in my mind so tolerable is just comparing it to the prior two.  During her 23rd treatment she received 19ml of ethanol and during her 24th she received 16ml.  That was a TON!  Her recovery was long and hard for both those treatments.  During the 25th treatment, she received a significantly lower dose that for some reason I cannot for the life of me remember.  I believe it was somewhere around 8ml.  She had a bit of a rough time holding much down the day of treatment which was a bit out of the ordinary, but by the next morning she was feeling much better and back to her cheerful, and optimistic self.  All is well, all is well.

1000 miles and 1000 tears

I know that I am done when I am not counting anymore, and I have lost count.  I sure just hope that all this travel and pain is not in vain.  Gabi and Izze are such sweet girls.  They are both very strong, independent, and courageous little ladies.  This last treatment I really realized what a whiner I am.  I felt like I wanted to throw a tantrum more than once, and I look at my girls and see their brave and stalwart faces gritting their teeth and trudging forward with their responsibilities as strong women would do.  I want to give up.  I want to throw in the towel.  I want to bury my head under my pillow and pretend it's not happening.  I hate to pack.  I hate to know that I have to calm Izze's anxieties about us leaving again.  I hate feeling like I am lying to her. I hate to leave her.  I hate to pretend like everything is OK, and it's not that bad, and it's not that hard.  I hate to pack for something I don't want to do.  Isn't packing for trips and vacations?  I want to distance myself, and I feel like when I am not needed to be strong and when I have a moment to myself I mentally walk away from the situation.

Gabi starts here first day of Kindergarten tomorrow and I want to tell her so badly that it's a new beginning, a fresh start, no more treatments, a new chapter...but I can't.

She received 16ml of Ethanol this time.  She was terribly swollen and once the swelling in her eye went down she hasn't been able to close it without using her hand to do so.  It has been a challenge keeping drops and moisture in her eye.  She wants to be outside, playing with friends and enjoying summer, but when her cheek is all blistered and her eye can't close and is dry and red it just hard to be a kid and have fun.  Somehow, she keeps a smile on her face and a great attitude.  We have had to keep A ton of ointments and creams on her burns and drops and eye lubricants in her eyes.  I have had to tape her eye shut at night so she doesn't get severely dry eye and cause damage to her cornea.  She is down to two small, but deep scabs left to heal, and her eye still won't close but it probably won't for a while yet.

I know I keep saying it, but it truly is amazing how she can find good through it all.

Love you Gabs!  I hope you're done soon.  

2 days after treatment

5 Days after treatment

12 days after treatment

Trooper

Well, it's time again for another treatment post.  I believe we just finished up treatment #23.  

This time on the way to the hotel we stopped at the Denver Temple.  It was so nice to get out and stretch from the long drive and just sit for a while in front of the beautiful and peaceful temple.  Gabi enjoyed the fountain most of all.

Once we got to the hotel she of course persuaded everyone to the pool so she could get in a good swim.  She practiced her side breathing with freestyle and she is doing so awesome!  I can't believe how graceful she is in the water and her technique is so good for a five year old!  After she swam with Ben for over an hour practicing flips and tricks and jumping off Ben's shoulders and head she was ready for some food and relaxation.  We filled her belly, got her showered and dressed and then I turned on a movie for her while I painted her toes and braided her hair, just the way she likes it.  She soon fell fast asleep for the night.

Morning came quickly and we were to the hospital by 6am and the doctor was already waiting for us.  She was in treatment by 7am, a record!  I guess there was a patient that was going to be before her the had canceled, so we were able to sleep in a bit and get right into treatment.  I wish it happened that way more often!  She was so tough when we had to use the mask again.  She decided to choose a flavor this time so that it would smell a bit better, but I don't know that it helped much.  She woke up i recovery with me there an hour and a half later and she was in some pain.  She received 19ml of ethanol and she was feeling it.  They gave her some Phentenol and she fell right back to sleep.  It's always better with her the longer she can sleep off the anesthesia the better she recovers.  She spent two more hours sleeping before she ate and drank some.  When it was time to be discharged she took out her own IV again.  I think it is so crazy that she prefers to do it all.  The nurse just stands there with gauze and a Bandaid while Gabi does the rest.  She even pulls out the IV tubing in her hand and places the gauze on it to stop the bleeding.  She is just so amazing to me.

We left the hospital in good spirits, although we knew there was going to be a whole ton of swelling with that much ethanol.  We were prepared and she does so well taking her Motrin and Prednizone jut as she is supposed to.  It makes such a difference in her recovery and I think she knows that now.  When we got back to the hospital she ate tons, drank tons, used the bathroom and then slept until 7pm.  She woke up to take some medicine, eat and drink more, and then she went right back to sleep until 6am when we were leaving to drive back home.  

She really is a trooper!  For her sake I hope she is done soon enough for her to keep her spirits high, and her confidence even higher.

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.

Twenty-One

As we continue to complete treatment after treatment, I feel exhausted and hopeless at times, but I find myself not allowing myself to stay in that state for long.  Even though this is a hard trial at this time in our lives as a family, and especially for Gabi, I know it won't burden her forever.  We have been blessed in so many ways with Gabi, and with her recovery.  There are still many conditions, and diseases that cannot be cured by medicine, and some that cannot be cured or healed on this Earth or in this life.  Gabi has been blessed with this "happy" challenge, a curable form of a venous malformation. Gabi has been blessed with an amazing personality and testimony in her purpose in this life.  She continues to love life, to see the good in all, and to have faith in her parents, and doctors, and especially in her brother Jesus Christ.  To be able to express the courage and strength she has I will mention some experiences that we have had with her.  We began these treatments when she was only 8 months old.  She was a baby; a nursing, happy, chubby, baby.    After her first treatment I lost my milk because she couldn't nurse for 48 hours.  I tried pumping, but to no avail.  I felt horrible that I couldn't give her that comfort and that necessary nourishment.  It was a hard time for Ben and I as we considered whether this was worth the pain and sadness we felt we were causing an innocent, vulnerable, and trusting child at such a young age.  Through much prayer and tears we knew there was no other way.  The risks were too great if we left her birthmark untreated.  As we took her to treatment after treatment we felt like we were tricking her, she trusted us with everything as we were her parents, and each time she would come into recovery I felt like I was lying to her.  I didn't want to say anything about the treatments, just show up pretend nothing was going to happen and then I would go into recovery mode to help her heal as quickly and as comfortably as possible as soon as she was out of surgery.  What has always amazed me is that she has never once been angry or upset at Ben or I for taking her.  I know that our children understand that we as parents truly are doing our best to protect them and to love them with everything that we are.  As Gabi started getting older and being able to catch the pattern of what happens when we go to Colorado, what happens when we stay at the specific hotel, what happens when we wake her early in the morning, what happens when we take the very quiet drive in the dark to the hotel, what happens when she is surrounded by nurses and doctors, what happens when we go into the cold room, what happens when she awakes in pain and confusion in recovery, she began to understand that this isn't going away.  She has always been a very cheerful and excited child and I know she was born with her spirit to comfort us and to give us strength to endure this trial with her.  As we would make these drives to the hospital in the early morning hours when she was about 18moths-2yrs, I would sit next to her in the back seat as I always do.  One specific time I remember looking at her, holding her hand telling her that I loved her and that this would soon be over.  I remember looking into those toddler eyes in the moonlight seeing tears dripping off her tiny cheeks.  There was no whimpering, or crying, she wasn't squeezing my hand, or looking scared or angry, just tears running down those little cheeks.  The strength it must take an adult to understand to to react in that way in a similar situation would be hard.  But to be the parent watching your baby was unimaginable.  I know that she has her angels with her, I know that with little children the veil is so thin, I know that she understands in some depth of her soul her purpose and her trial that she has accepted for this life.  She is a testimony to our family of patience, long-suffering, faith, hope, and enduring faithfully to the end.  I know that we have only finished the twenty-first treatment and we have no knowledge of the end yet, but with Gabi's strength and example to us we will finish and be done one day.  At that day I know that I will be able to look back and see how much we have grown through each and every treatment, and each and every trial that has come with it.

And in the end our courageous and silly Gabrielle will be there, still smiling, still enjoying every minute of her exciting life.