Mikala S. - Quilt Finished in 2006

Born: December 31, 2003

Illness: ALL Leukemia

A Thank you from Mikala's Family!

Written May 16, 2006

Thank you for absolutely beautiful quilt that we received for Mikala.  It is absolutely perfect in every way.  I would especially like to thank the finisher for sending it and putting it together with such care and love.  I am hoping to get you some pictures of Mikala with the quilt.  But

first, with your permission, I would like to have our local quilt shop-Big Horn Quilts-display it in their window with a flyer for your website.  There are a lot of stitchers in this area that may love to join your organization. (Thank you Heidi, that was so sweet of you, from LQ Cathy)

Thank you again

Love Heidi and Mikala

Mikala S.'s Story

written by mom Maria

Mikala Isabel was born New Year's Eve 2003, 15 minutes after we entered the hospital.  From that moment on, she had a personality all her own... she was the wild child, afraid of nothing and into everything.  She took charge of the household from day one.

Friday night, December 10, 2004, just two weeks shy of her first birthday, Mikala got a fever...we treated it with tylenol and she was fine, the next morning she was perfectly normal and we went Christmas shopping.  During the day, the fever returned and we gave her more tylenol.  Again, she was normal the next morning and we went to get a Christmas Tree.  This time the fever was up to 105° and a little scary, even though the tylenol brought it down.  The next day I made an appointment with our doctor.  In the span of about 4 hours, this routine doctor appointment went from a complaint of fever and a slight rash that I had assumed was rug burn from crawling, to blood tests, to ICU, to an air ambulance ride taking us to Denver Children's Hospital, ending with the scaryest word in the English language.... Leukemia.

She was diagnosed with ALL on the 13th and spent a week in Children's Hospital in Denver.  Bone Marrow aspirations, EKG, Blood work, Surgery implanting broviac tube, transfusions... is there any way I can trade places?  I always think about what most pregnant couples say when you ask what they want to have... a healthy baby.  This is a good thing to wish for but, in hindsight, I would like to change my answer.  I want a happy baby.  The first month of living with leukemia is a nightmare.  I can count on one hand how many times Mikala smiled in that month, she never laughed.  I would have done anything to switch places with her and protect her from everything... isn't that my job?  So I am really bad at it, because I couldn't do a thing except hold her and try and comfort her 24 hours a day, 7 days a week.

We were officially in remission January 20, 2005 but still had over 2 years of treatment left.

Since that time we have learned never to go on vacation because that is when everything happens.  In March we were treated with antibiotics for a fever and released from St Lukes Children's Hospital in Boise.  We had gone on vacation to see some basketball.  Bad Idea.

You would think we learned our lesson... no.  We went on vacation to Portland Oregon and not 8 hours after stepping off the plane we were in Doenbecher Children's Hospital with a fever and low counts.  We were there for 2 awful weeks.  Mikala's mouth hurt so bad that she couldn't eat and rubbed her face so much she had black eyes.  We left after another round of Chemo, blood transfusions and a berating from the nutritionist about her weight. Evidently, it is OK for her to eat blue cheese dressing straight out of the bottle.  After being released and flying home, we spent one night at home before being admitted to St. Vincent Hospital with more fever and low counts.  At least they gave her some food intraveneously... I was really worried that she was going to starve.  We were there for another week.

What else can go wrong?  In May Sierra (Mikala's sister) got the chickenpox. They had to fly varicella immunogloblin in from the east coast in order to get it to Mikala in the small window we had to try and boost her immunity.  Fun.

In June I noticed that Mikala seemed to be bruising very easily so we checked her counts and were told to rush up to St. Vincent's as soon as we could has her counts were dangerously low.  During the transfusions, she got a fever and we were admitted.  Eight transfusions and a week later, we were released.

We made it to the maintenance portion of Mikala's treatment which was supposed to be smooth sailing, but, nothing can be easy, can it?  In July, although all the regular counts seem good, the liver is stressed and we had to be taken off the chemotherapy... Because the liver is so stressed, Mikala started throwing up most of her food and it was determined that she had Chemo induced Hepatitis.

After the initial panic about the liver, the enzimes went back to normal after being taken off chemo, so they started her back on half doses.  At this time her liver enzimes have not stabilized since July and the plan is to check again the next she goes in for vincristine.  If the enzimes have stablized we will up the chemo doses from 1/2 to 3/4 and see how that does.  If it continues to climb, we will have to change drugs to what she has had previously.  Considering how much time we spent in the hospital this spring, I am not rooting for this path.  But I suppose hospital time now with low counts is better than a liver transplant later.

In the meantime, we have had 3 more emergency hospital visits and a clogged broviac tube requiring surgury to remove it and replace it with a port.

Despite all the scary stuff in the last nine months Mikala seems almost back to normal.  She has picked up the path of destruction right where she left off... writing on all the walls with marker, poking her sister while she is trying to sleep, pouring chocolate milk on the couch, grinding blueberry muffin into the seat of the car.  We love it.

Written by Mikala's mom Heidi in September 2005