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.  

We've hit the 20th

Ten treatments ago we were hoping we were about half way through the treatments and we would be finishing up around treatment #20.  So, here we are, #20, and I wish we knew more.  I wish we had a better idea of how far we've come, and how much more to do, but we don't.

It's a hard thing; not only on Gabi or me, but our entire family.  It requires a lot of help for others to be able to complete each one.  It's exhausting.  It's long and hard.  Gabi seems to be doing very well with continuing to return with no idea of when she'll be done.  I, on the other-hand am losing energy and effort.  I question what we are doing frequently, but know we have no other option.  We know we have to do this, it's just so hard.

At the end of January we headed out again on the long drive.  We made it to our hotel in record time.  The traffic was fantastic until we hit the ski cities and all the commuting skiers.  That's when we hit a traffic jam right before the Eisenhower Tunnel.  We had to wait 40 min to venture through because of the high levels of carbon monoxide in the tunnel.  They have huge air blowers to keep the tunnel clear, and because of the high volume of cars passing through they had to control the amount of cars by interval. 

We decided to try out a new hotel this time.  The Residence Inn.  It has a kitchen, two bathrooms, and two double beds in separate rooms.  It was nice, or it would have been if it wasn't built in 1930 and still contained the same furnace from 1930.  During the first night the temperature dropped to 60 degrees.  We thought that wasn't very cool until the next night when we woke up and the temperature was 54 degrees.  I am sorry but that is a bit cold for a little girl who just had a treatment.  Rude, and you know what they did when we mentioned/complained about it.  "We'll add some extra points on your loyalty card."  That did NOT make me feel better.  Also, they were to serve dinner (egg rolls to be specific) and when I arrived it was bean soup, from a tin can.  

Besides all the bad at this hotel, it was nice to have 2 TVs, one for Ben and one for Gabi.  We put her hair back the night before so it wouldn't come back plastered in blood like the last few times, watched some Disney movie, and she was peacefully out for the night.  She slept very well considering the  anxiety, fear, and emotions that I know she carries with her.

The following morning was as it always is, early.  With the same routine at the hospital, a lot of waiting. She was in treatment around 8am and out about an hour and a half later.  I had asked Dr. Yakes to ease up on her a bit from last time.  I told him how bad she had blistered and was not comfortable with the size of the open wound.  He did as I asked and she didn't receive any blisters.

She wore her new gown from Aunt Honey (Angi), and loved it.  It makes a tremendous difference to have your own clothes, it is much more comfortable for her and it calms her from the moment we enter the hospital.   They always have a gown and socks on her bed when we arrive and they ask her to change into it.  She is always very vocal to them and lets them know she will not be using their boy stuff (the children's gowns are spaceships and aliens), she has her own.

The treatment went well, and she was in recovery for a short period of time, and required no pain meds and only blow-by oxygen until her Oropharyngeal airway was removed from her throat, which is when she wakes up a bit.  She recovered comfortably and quickly in post-op and was anxious to leave the hospital.  We went back to the hotel and laid down for the rest of the day.  Ben ran the green juice errand and got her chicken nuggets as requested.  Her favorite thing to eat back at the hotel is green juice, chicken nuggets (from chick-fil-a), and waffle fries, which she always receives on request.

The weather was a bit cold and moist so we waited until 6:30am to leave so that there was some daylight and possibly some heat once we reached the mountain pass.  As we entered into the higher elevations we were pleased to find some new wildlife we haven't seen on these trips.  This big horned sheep was gracing us with his presence right on the side of the road.    

Once we reached the top on the west side of the tunnel we were in a new land.  The hills were covered in snow and the roads had been plowed with snow banks on the side reaching easily over 6 feet high.  It was a gorgeous drive as always.

We returned home safely, picked up Izze from Grandma and Grandpa Dahl's, but we didn't leave without our bellies full of a wonderful homemade roast dinner.  Gabi and Izze got back into routine pretty quickly and Gabi went to school Wednesday morning.  We decided on the steroids again for swelling.  They make such big difference in her swelling!  Her eye never swelled shut, but with the drug we have to endure a very grumpy and emotional Gabi.  It's hard to see he in pain, it's hard to see her swollen, I guess it's just a choice.

Is it really only #19?

I truly feel that our lives run in time from treatment to treatment.  I always think to myself things like, "I will start that after the next treatment." Or, "I need to get that done before the next treatment."  They are a measurement of time, like months, or years.  I set new goals or resolutions after each treatment trying to make our life in between treatments most efficient and enjoyable.  I feel like I want to be able to fit everything in and be able to take care of everything despite our trips.

As usual we took off  Sunday (December 5) morning.  We dropped Izze off at Grandma and Grandpa Dahl's house with her suit case and "comfy cosies." (blanket, nightie, baby,...)  Then we were out on the road, the long, long road to Englewood, Co.

Our first landmark this trip was a Golden Eagle.  It was in Spanish Fork Canyon devouring the carcass of a deer on the side of the road.  Once Ben pulled over so I could get a picture it took off in flight in a hurry!  My lens doesn't have a large enough zoom to sneak up on this type of predator.  It was cool to see anyways.

As we drive the long drive we try to set check points, or find land marks to hopefully pass the time.  It usually ends up with Ben and I squirming and fidgeting for excitement while Gabi calmly entertains her self with her bucket of goodies and entertainment.  She is definitely a much better traveler than her father and I!  Even with bathroom breaks, Ben and I are crying to stop, and she never complains, ever.

Once through Spanish Fork Canyon we set our next check point; Wellington.  This is a comical story.  It all began back in October/November when a man was giving a talk in church and was telling the story of when he would travel though Wellington on a very regular basis, and while traveling frequently for work through this town he would consistently be pulled over for speeding.  You see, the speed limit through Spanish Fork Canyon is 60mph (approx.) and as you round the bend you enter Price, where the speed limit is still 55-60mph (approx.).  What happens to the road next is what will kill you if you don't pay attention.  In the mans talk he said that he quickly learned to NEVER speed through Wellington because they will ALWAYS and I don't mean most of the time, I mean ALWAYS get you.  So there we were driving through Price and into Wellington, I was on the phone and Ben just received a text and was trying to get me to read and respond to it.  While that situation was going on we passed the Price/Wellington border speed limit sign.  Which goes from 55mph to 35mph.  The next thing that happened is I saw an officer on the left-hand side of the road with his speed gun out.  We knew we were goners.  Even though he was going 49 ( because it is a very natural reaction to slow down while entering Wellington, if you've ever traveled through) it wasn't enough to slide by those officers.

Gabi, was not impressed by the whole turn of events in Wellington, if fact she was slightly afraid that the officer might take her dad in cuffs, and lock him in the slammer.  Once I assured her that would not happen she sat in silence waiting to get back on the road.

After the unnecessary loss of time in Wellington, Ben felt it would be a frivolous waste of time to stop at our next check point, the border of Utah and Colorado.  So I had to quickly scramble to the back of the car, dig through the luggage, find the camera bag, lunge back to the front seat, whip out the camera and snap this odd photo of the border sign, with who knows who standing at the sign.  Oh, yes, and me in the side mirror, just glamorous.

Because I put up a big fuss about him not stopping at the border sign he thought it would be funny to do the same at the following check point, Eisenhower Tunnel.  Luckily I know Ben better than he thinks I do, possibly better than he knows himself.  So this time, I was prepared and got a better shot.  Also, I thought it was quite interesting at the elevation this tunnel is at.  11,150ft.  I believe that is about the same height at Mt. Timpanogos.  

On the other side of the Continental Divide, or tunnel, there was this awesome ice formation.  Could help but snap a photo!

***

As the schedule goes we checked into the hotel, ate some dinner, went shopping, and swimming, then off to bed.  Monday morning comes early each time, and this Monday was no exception. We have made this trip so many times it's becoming second nature to know exactly what we do at what time and who does it.  I will get ready and then wake up Ben, who then starts getting ready while I pack the hospital day bag.  When he is ready he takes the bag and other necessary items to the car to warm it up and pull it to the front doors of the hotel.  I put on Gabi's warm socks, say a prayer with her, wrap her in her blanket and carry her to the car on her pillow.  Then it's on to Swedish Medical Center.  We are admitted between 5-5:30am.  We wait in pre-op while the nurses prepare all their paperwork, we say a quick "Hi" to the anesthesiologist and Dr. Yakes

An average dose of ethanol that she receives each treatment is around 5-7ml.  When I was allowed into her recovery bay I knew she had received much more, by the swelling that was already apparent.  After talking to the nurse she looked at her chart and confirmed that she did in fact receive much more, 10ml.  That may not seem like much difference, but it is.  I knew there would be a long recovery ahead after this treatment.  She already had blisters forming in her mouth and on her cheek.  I was worried about scaring, infection, *sigh*, ugh.....  She recovered her vitals quickly to normal.  I spoke with the P.A. about the best option for Gabi's recovery considering her current circumstance.  We decided on Orapred ODT (a desolvable steroid) for swelling, and Motrin for pain.  When we got to the hotel her blisters when growing and looking very sore.  I was a bit concerned.  Over night she popped the blisters on her lips and cheek from moving around while sleeping.  I happened to bring along some of her prescribed Silvadine (from a previous treatment) and applied some to her cheek blister.  During the drive home her blister was dripping and dripping clear fluid ( a good sign compared to pussy dark fluid).  She went through 3 boxes of tissues and I felt horrible because she was so worried about not having control over it.  We were very consistent on giving her her medications on time and she was very good to take them.  I believe this helped with her quick healing.   

The weather on the way to Colorado was very fair.  The way home, was another story.  This was on the flip side of the Eisenhower Tunnel Tuesday morning.  These roads are very steep and very dangerous without snow and ice.  When you factor semi's, snow, ice, mindless drivers and steep grades I believe we were all lucky drivers on that road to have not been in any accident.  

Even though the roads were not perfect travel conditions, it did make for some beautiful scenery.

Gabi is a trooper.  She watched movie after movie during the ride home.  Her swelling was so much so that she was only able to eat and drink through her syringe.  Luckily before we left the hospital I asked for their largest empty syringes, so she was set up.

Gabi is a testament of the resilience of children.  She continues on without complaint of having a dry mouth, pain, uncontrolled drooling, one eye swollen shut (for days), not being able to eat the foods she wants to, and list of course goes on and on.  Instead, she is so grateful and excited about when her eye opens, and when she can eat what she wants, and when she can stop drooling and close her lips.  She is so excited when she reaches those benchmarks during her recovery each time it's like it's her first time being able to do it.  She was more excited about her eye opening and her lips touching than when she learned to tie her shoe by herself or zip or button a jacket.

As she would lie there watching her movie I would fill her syringes to her hearts content of whatever she wanted in them.  Ben gave her a new idea when we stopped at Wendy's on the way home, ice cream.  We let it set and melt a bit and then we sucked that frozen goodness into her syringes.  She loved that idea from dad so much that it carried into the days following.

She got tired of me trying to feed her through the syringe that she took it into her own hands, I was doing it all wrong I guess.

The final checkpoint of the trip are always the windmills at the mouth of Spanish Fork Canyon.  I finally feel like we haven't been driving forever because we are nearly home to our comfortable home and family.

For the following day or so Gabi milked the ice cream and got every kind she wanted, for whatever meal she wanted.  She typically ate every meal very well before she asked for ice cream, making it much easier to say yes.

We kept her syringes full of all the many liquids she loves, including green juice and water.  Thursday afternoon I decided that it would be to her best interest if I had her open oozing blister looked at by her pediatrician, and they agreed as soon as they saw her.  She was then prescribed an antibiotic in case of infection.  Her blister was 2in in diameter and very tender and sore from the swelling and ethanol.  They also prescribed her bactoban to help the healing of the blister.

She was great to take all her medication and allow me to put on her topical ointments, and by the end of a weeks time her swelling was all but gone and the blister had scabbed over and was mostly healed.  She truly is a little miracle.