On June 1, 2010 our two year old, "Little Air Bear," was diagnosed with Childhood Acute Myeloid Leukemia (AML) Type M7. After enduring 146 days at Primary Children's Hospital, Erin is now in remission and living a full life at home with our family. Her strong will and constant happy smile is an inspiration to us all. Through our difficult circumstances we found great strength and peace in our Savior, Jesus Christ. Thank you for checking in on us.

Friday, December 31, 2010

The Emperor of all Maladies

I have been spending my lazy holiday break days with my family, snowed in on a mountainside overlooking Bear Lake.  I've spent much time pouring over a book my older brother (a surgeon) mailed to us, "The Emperor of all Maladies" by Siddhartha Mukherjee.  It is a riveting, well written biography of cancer.  Although I am only 1/5 of the way through this 500 page textbook/novel, I feel like sharing some of the many interesting things I have learned from my readings.  I am sure that as I continue through this book, there will be more interesting things posted on this blog.

"Illness is the night-side of life, a more onerous citizenship.  Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.  Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place." --Susan Sontag


"Those who have not been trained in chemistry or medicine may not realize how difficult the problem of cancer treatment really is.  It is almost - not quite, but almost - as hard as finding some agent that will dissolve away the left ear, say, and leave the right ear unharmed.  So slight is the difference between the cancer cell and its normal ancestor." --William Woglom

History
I have always been under the impression that cancer is a modern disease, but many paleopathologists have found cancers in mummified specimens.  Bone tumors, because they form hardened and calcified tissue, are vastly more likely to survive over centuries and are best preserved.

--Abdominal cancer found in a mummy in the Dakhleh Oasis in Egypt from about 400 AD.
--2000 year old Egyptian mummy in the Alexandrian catacombs with a tumor invading the pelvic bone.
--A jawbone dating from 4000 BC found in southeastern Africa carried the signs of a peculiar form of lymphoma. 
--440 BC Atossa, the queen of Persia, had a form of breast cancer.
--March 19, 1845 John Bennett described an unusual case where a patients blood was chock full of white blood cells.  He called it "a suppuration of blood" or in other words, the blood had apparently spoiled.  This is the earliest known case of Leukemia.

"Cancer, far from being a "modern" disease, is one of the oldest diseases ever seen in a human specimen - quite possibly the oldest." --Siddhartha Mukherjee

"Thus, for 3,000 years and more, this disease has been known to the medical profession.  And for 3,000 years and more, humanity has been knocking at the door of the medical profession for a "cure." --Fortune, March 1937

"Cancer's emergence in the world is the product of a double negative: it became common only when all other killers themselves (tuberculosis, dropsy, cholera, smallpox, leprosy, plague, or pneumonia) have been killed...civilization did not cause cancer, but by extending human life spans - civilization unveiled it...The capacity to detect cancer earlier and earlier, and to attribute deaths accurately to it, has also dramatically increased in the last century." --Siddhartha Mukherjee

"Why don't we try to conquer cancer by America's 200th birthday: What a holiday that would be!" --Advertisement published in the New York Times by the Laskerites.  December 1966


Terms
-In 400 BC karkinos, from the Greek word "crab" showed up in medical literature to describe a tumor with a clutch of swollen blood vessels around it.  It reminded Hippocrates of a crab dug in the sand with its legs spread in a circle.

-Onkos was the Greek term for a mass or a load, or more commonly a burden.  Cancer was imagined as a burden carried by the body.  Onkos occasionally was used to describe tumors, from which the discipline of oncology would take its modern name.

--Weisses Blut - white blood - was the first name for leukemia.  It is a literal description of the millions of white cells seen in the blood.

--1847, "leukemia" - from the Greek word leukos, meaning "white" became the official name for Leukemia.

Thursday, December 30, 2010

Final Results

I received a phone call from Dr. Verma today and she said that Erin's bone marrow aspirate results showed NO TRACES of Leukemia.  She also said that Erin's ECHO and EKG both looked normal. 

Erin will get her central line out next week.  She is really very excited about that!  She totally understands what is going on.  This morning she told me "no more eye drops, no more chemo!"  I reminded her that her tubes were coming out next week and she said, "no more tube-ees."

I just feel so blessed that we are at the end.  I am so thankful that Erin is getting back to normal.  Her hair is coming in full force.  Yesterday she said, "I found my hair.  It is so soft."  When her hair fell out, we used to say that she "lost" her hair.  Now, she is happy to have "found" it.

On to a Happy New Year!

Saturday, December 25, 2010

Christmas

"May you, wherever you may be across the world,
have a wonderful Christmas....
May even those whose hearts are heavy
rise with the healing
which comes alone
from Him
who comforts and reassures."
-Gordon B. Hinckley

The timing of Erin's cancer is such a blessing.  From the beginning, we knew that it was meant to happen at that very time.  We couldn't have picked a better time in our lives to start our fight against Leukemia.  And, we couldn't have picked a better time to have won the battle.


Our Christmastime
Being together.

Rejoicing in the birth of our Savior
Gratefulness for the tender mercies He granted us,

Understanding new emotions,
suffering the depths of anguish
praising the gentle peace.

Witnessing other's struggles
sharing the burdens with tears and embraces

Wishing
Hoping
Yearning
Praying

Feeling extreme love for our child
in awe that God loves her
even more
than we do.

Witnessing miracles

Being together.

We are so grateful for all that has been done for us. We had so many surprises on our doorstep this morning and the past few days too.  Thank you to all of the angels out there who have served us.  Thank you for making this Christmas a special one.  We are so grateful and overwhelmed by the generosity shown our family. 

Thank you. 
Merry Christmas!

Thursday, December 23, 2010

Last Big Clinic Day

Today Erin had a big day at Primary Children's.  We decided to make it a day in SLC with the whole family.  John took Cecily and Caleb to IKEA and the Living Planet Aquarium in Sandy while Erin and I were at the hospital

First off we went to the Oncology Clinic.
We met McKall and Chase, some of our ALL Leukemia friends
(too bad we didn't get a picture with McKall)


Erin looks so bored doing her blood pressure.
Just a few months ago the blood pressure was TORTURE,
now she barely notices. 


We found a HUGE surprise when we got to her Clinic room.
It totally brightened her clinic experience.
This blue stocking is taller than she is.
Her words when she opened the stocking up:
"Holy Moly!"
It was full of princess things, play dough, and Tinkerbell barbies.



We were so happy to see Dr. Verma and Dr. Barnette (not pictured). The Clinic was empty so we got to sit and chat with both Doctors for 45 minutes. We love them so much. They were very happy to see Erin.  They kept commenting on how well she did the last 6 1/2 months.  

Starting today we are pretty much done with everything.  She will get her central line taken out the first week of January.  Erin only has to take Septra (an anti-pneumonia medication) for 3 months.  She is off all of her other medications!  Yay!  She won't need to have anymore blood tests done at home to check her ANC.  We'll just do them once a month in the Oncology Clinic at Primary Children's for the next year.  It is such a weird feeling.  I am still so occupied with the thoughts of not letting her get sick or be around anyone sick, but her immune system is coming back.  It's strange to think that she won't be immunocompromised anymore.  I am adjusting to normal life again.  It is all so strange and wonderful.


Then we went down to R.T.U (Rapid Treatment Unit) for her Bone Marrow Aspirate.  She was giggly and played and played with the toys in her stocking. She was starving because they were doing anesthesia, but she was so happy and well behaved.


Sleeping little angel.


She woke up from the bone marrow aspirate happy as a lark and asking for the usual purple Popsicle. Dr. Verma looked at a sample of her bone marrow under a microscope and said it looked really good.  The marrow will be sent to the Primary Children's lab to be further examined and another sample will be sent to the Children's Oncology Group for even further in depth examination.  We should get results around the 29th.



Then we made our way to Cardiology for an ECHO and an EKG.

The ECHO (Echo cardiogram) is an ultrasound of her heart.  The Daunorubicin chemotherapy she took during treatments can harm her heart so they keep a close eye on her heart. 

The EKG (Electrocardiography) measures the electric activity of her heart.  They place 12 electrodes on her.  She HATES it.  She really HATES it. She kicked and screamed through the entire EKG.  It doesn't hurt, but she just hates all those stickers.


We got home to a roast we had put in the crock pot and we had a little pre-Christmas Eve celebration.  We ate dinner complete with Christmas crackers.  John and I both served missions in Great Britain (me in England and John in Scotland) and at Christmastime we pop open the crackers and wear the crown inside and there is always a little present hidden inside too.  Then we gave the kids a special present from Grandma Hughes.  She is such a talented seamstress. Can you believe she MADE these adorable pajamas?



Finally we opened a special present that a secret Santa had dropped at our house to open when we were all together. 


It was the cutest book called "Tickle Monster"
by Josie Bissett
It even came with tickle monster gloves.
Erin had to tickle everyone with them.


We are so grateful for the cards, letters, gifts, presents on our doorsteps, the 12 days of Christmas, the office elves, prayers, hugs, and phone calls.  We are so overwhelmed by all of the love that has been shown to our family. 

This year has come with some tremendous trials and some of the most cherished moments.  Thank you for helping us.  Thank you for checking on us.  Thank you for praying for us.  Thank you.

Monday, December 20, 2010

Erin's Counts

Two surprises today!

1. Erin's ANC is 1300!  Wow, it shot up!  She will be so happy to not have to wear her mask out in public. 

2. Make-A-Wish Foundation accepted Erin as a wish kid.

Pure Cuteness

No child should have to endure what Erin
and our other little cancer friends are going through.

Erin is a different child!
She is 100 times happier here at home with her family.
We are having so much fun being together.

Merry Christmas!




Erin, (2 1/2) Cecily (5), Caleb (4)


Thursday, December 16, 2010

Ringing the Bell

Ringing the Bell
Signaling the End of Cancer Treatment


Giving High Fives

Wednesday, December 15, 2010

The Numbers

I am just shocked and it's so hard to believe what Erin's little body has been through.

As of January 7, 2011:
218 days since diagnosis
146 days & nights spent at Primary Children's
35 days of IV Chemotherapy
Her ANC (immune system) was zero for 79 days
6 Central line repairs
34 Dressing changes
4 Echocardiograms
4 EKGs
5 CT Scans
2 MRIs
1 Ultrasound
1 Central line placement
1 Central line removal
6 Bone Marrow Aspirations
4 Lumbar Punctures
2 PEG shots
13 Blood transfusions
13 Platelet transfusions
Highest Fever: 104.3 F (40.3 C)
35 different pharmaceuticals
Biggest insurance claim: $102,312.39
Smallest insurance claim: $0.30
Insurance statements filed away: 250

Pharmaceuticals
ARA-C (Chemotherapy)
Daunorubicin (Chemotherapy)
Mitoxantrone (Chemotherapy)
Etoposide, VP-16 (Chemotherapy)
Neupogen (stimulate white blood cell growth)
Morphine (pain reliever)
Oxycodone (pain reliever)
Tylenol (fever reducer)
Nifedipine (blood pressure reducer)
Versed (sedation)
Ketamine (sedation)
Propofol (sedation)
Precedex (sedation)
Nembutal (sedation)
Lidocaine (local anesthetic)
Zofran (anti nausea)
Atarax (anti-allergen)
Benadryl (anti-allergen)
Claritin (anti-allergen)
Bactroban (antibiotic ointment)
Calmoseptine (diaper rash ointment)
Clobetasol Propionate (ointment)
Mupirocin (antibiotic ointment)
Septra (anti pneumonia)
Vancomycin (antibiotic)
Fortaz (antibiotic)
Nafcillian (antibiotic)
Meropenem (antibiotic)
Clindamycin (antibiotic)
Voriconazole (anti fungal)
Caspofungin (anti fungal)
tPA - Tissue Plasminogen Activator (blood thinner)
Heparin (anticoagulant)
Fluoride
Saline Eye Drops

Tuesday, December 14, 2010

Home.

Home.

We are home.

Our whole family!

All 5 of us.

No more empty chairs.

No more empty little bed.

The Last Night

It's the last night. 

The. Last. Night.

I hope and pray that it is truly the last night EVER that we spend at Primary Children's with our sweet Erin.

As I sit here and take in our little room I am a little shocked at how well I know these walls. I could close my eyes and still see every detail of this hospital room.  It is so strange how it has become a home for us.  John and I were chatting about how Cecily and Caleb miss Erin so much.  They have only seen their little sister ONCE in the last 25 days.  What kind of a life is this?  This isn't a LIFE. 

Yet, it has been our life, our life with Erin's Acute Myeloid Leukemia. 

Leukemia, a word that was so foreign to me when it changed my world.  I can still picture myself standing in a checkout line at WalMart when my phone rang.  John's voice was really somber and he told me that our Pediatrician had called and that the blood test Erin had received 2 hour previous showed signs of Leukemia and that we were to go straight to Primary Children's Hospital.  It wasn't real.  It didn't feel real.  It did not feel completely real until the next day when the anesthesiologist took her sleeping limp body out of John's arms and into surgery to have a Broviac Central Line placed and a chemotherapy drug (ARA-C) shot into her spinal fluid.  We bawled for hours after that.  We had bawled for hours before that too, but it did not really hit that we were entering something new until that moment.  That was the start. 

Now we are at the finish.  6 1/2 months later with 146 days and nights spent at Primary Children's we are down to The. Last. Night. 

We are experts in new things. 

We know what time the call is made for the "feeding trough" (also know as the Hospitality Cart) and that if you get there first off that you get a bran muffin.  If you get there last you end up with a cardboard bagel.

We know that there are several kinds of Leukemia.  We appreciate when someone asks us "what kind of Leukemia does your daughter have?" instead of, "does your daughter have the good or bad kind of Leukemia?"  It is difficult and sobering to say that Erin ended up with the rare, more severe "bad" kind.

We know how to read a CBC (Complete Blood Count) report.  Each morning the nurse prints off Erin's CBC and we know exactly what WBC, RBC, Hgb, Hct, PLTS, ANC, Band, Neut, Lymph, and Mono stands for and what the numbers below them mean. 

We learned to love without the guarantee that our hearts wouldn't be broken. We learned to trust without the guarantee that what we wanted might not be what God wanted.

We know how to work the XBOX and Television.

We have learned to accept help, especially when we didn't think we needed it.  But, then we found that it was absolutely necessary to get help or we couldn't have survived. 

Erin is an expert in taking oral medications as seen by THIS video.

Flushing Erin's line and giving her antibiotics at home became second nature.  There were even some nights at home when I'd wake up in the morning and I honestly couldn't remember waking up in the night and giving Erin her IV antibiotics, yet I had done it.

We both learned how to cry like a teenage girl.

Erin knows how to give her baby doll a central line dressing change complete with "ouch" sound effects.
We know the ins and outs of the hospital.  We know where there is somewhere quiet to cry or where there is a soft comfy chair to read a book or type on this blog.

We know where to find a vacant bathroom. 

Erin has coped phenomenally well for being stuck in a hospital room for 6 months.  She has been so kind and loving to us and the nurses through this whole ordeal.

We know new emotions.  We had days when @#!*% surrounded us and other days when Heaven felt close enough to touch.

We can sleep through the IV pumps beeping, lights being turned on, and survive the 24 hour surveillance through a window on our door.  We could teach night-shift-nursing 101.

We know the phone voices of the cafeteria staff .  Someday I'd really like to meet John.  He was always the funniest to talk to.  I did meet Mikaela once!  I heard her talking to someone and I had to ask her if she was Mikaela from the cafeteria. 

We have become experts in hiding tears and putting on a good face.

We have made some amazing long lasting friendships with people we would never normally have met.  We are so grateful for these people who have shared their deepest emotions and feelings with us.  We are grateful that they were listening ears and shoulders to cry on.

Monday, December 13, 2010

Good News

Erin's blood work:
White Blood Count = 0.7 (normal 6.0-17.0)
Platelets = 38 (normal 400)
ANC = 0
Neutrophils = 1 (normal 15-35)
Lymphocytes = 85 (normal 44-74)
Monocytes = 14
Bands = 0

Erin's counts are slowly creeping up and she is showing signs of improvement, however small they may be.  We are so grateful that her counts are FINALLY coming up.  Her ANC is still zero and has been zero for 25 days now.  It looks like she will be coming home on Wednesday.  We are so excited to get her home and enjoy the holidays together as a family. 

Her ANC (immune system) will probably be zero when she comes home, I know this is odd that they would consider sending her home without any immune system, but with all her other counts coming up it just means that her ANC will shoot up really really soon.  So, we are going to ask that no visitors come until her ANC is at least 1000 (a normal ANC is 1500 - 8500).  And then, if you are showing signs of sickness, or if you have been around sick people please stay away from us.  We really would like to keep Erin as healthy as possible while her immune system is so compromised..  Our home health nurse will be coming to our house and drawing her blood for her lab work on Mondays and Thursdays.  I will keep this blog updated with her ANC so that you can check and see if she is able to have visitors.  It will take 3-6 months for her body to fully recover.

I feel so blessed to have a beautiful strong daughter.  Erin has been so brave and strong through all of this awfulness.  She is one special little girl.  Her body is so much stronger than it was back on June 1st when she was diagnosed.  She is taller and finally weighs more than 20 pounds.  She is a whopping 22 pounds at 2 1/2 years old!!!  This is so much better than when our pediatrician diagnosed her with "failure to thrive" back in February.  I am so thankful that we found out what was wrong with our little air bear.  I am thankful that I was listening to the spirit one day as I rocked her to sleep.  I could see how strong and beautiful her spirit was, but her body jut seemed so frail and sick, her skin beyond pale, and covered in over 20 bruises.  I acted on that prompting to get a blood test done.  I am so thankful that we have been able to be treated by the wonderful Oncology team here at Primary Children's.  I am thankful that she alive and with us for this Christmas and hopefully many more to come.

Sunday, December 12, 2010

Day 31

Erin's counts came upish today!

White blood count 0.7.  Yesterday it was 0.5  This is the highest it's been this round.  (normal is 6.0-17.0)

ANC is still zero.

She had 1 Monocyte.

Platelets were 34 yesterday.  Today they are 37!!  (Normal range is 400ish) When the platelets stop dropping and start coming up that is a REALLY good thing,

The BEST news is that she has 3 Neutrophils!  It's a tiny amount, but it's WAY better than 0 Neutrophils.

Looks like she'll be home soon.  All I want for Christmas is to have my family together!

Saturday, December 11, 2010

Day 30

Erin's Counts:

ANC: 0.
White Blood Count: 0.5
Monocytes: 3
Lymphocytes: 97
Platelets: 34

However, I met with our Physician's Assistant yesterday and we got a few things done so that we can be ready to go home.  We ordered prescriptions for when we're home.  Her Voriconazole (anti fungal) is particularly tricky to find, and it costs $700 a bottle and lasts 14 days.  Thank goodness for health insurance!  Her Gynocologist came by and said her cellulitis is looking so small and okayed her to go home.  The Infectious Disease Doctors have okayed her to go home on only the oral Clindamycin (antibiotic) so I'm so thankful that we won't need to have her on the Meropenem (another antibiotic) through her IV when we are home.  I very much dislike doing IV meds at home since we don't get sleep when we have to do them.

She also got her medical papers for preschool signed.  I am amazed to find out that she isn't allowed to get ANY vaccinations until June of 2011.  And even then, if they are live vaccinations she can't have them until December 2011.  That is a whole year away.  Erin's counts will start to recover soon, and she'll come home.  But, her counts won't be like yours and mine for about 6 more months!

If all goes well and Erin's counts come up speedily, then about 3 weeks after she comes home they will take her Central Line out.  Oh boy, I CANNOT wait for them to take out her Central Line!!!!!  It will probably be sometimes in the first part of January.

Friday, December 10, 2010

Free For You, Worth EVERYTHING To Them

This CHRISTMAS, here are two relatively simple, FREE gifts you can give your fellow man:

1. Get registered in the bone marrow donor registry: http://www.marrow.org/JOIN/. There are many people who need a life-saving bone marrow transplant, but who don't have a match. Last month I read about Shannon Tavarez, an 11 year old girl with AML, who passed away. She needed a bone marrow transplant and a perfect match couldn't be found.  It is particularly difficult to find matches for people who are mixed race. YOU could be someones match. It takes about five minutes to get signed up. Get registered and give someone hope! Our friend Rachel was able to find a donor, can you imagine if she was saved because of YOUR marrow? What an amazing gift for everyone involved!

Erin receiving red blood yesterday. 


2. Donate blood at your local Red Cross you can also go HERE if you would like to donate solely to patients at Primary Children's. You can donate blood or platelets.  A single platelet donation can provide enough platelets for a full therapeutic dose for a patient in need. In fact, some platelet donations yield enough platelets for two or three therapeutic doses. By contrast, it takes about five whole blood donations to produce a single therapeutic dose. Many patients who need platelets are undergoing chemotherapy or organ transplant and have weakened immune systems. A platelet dose from a single donor reduces the patient’s exposure to multiple donors and is therefore preferred by many physicians. During a platelet donation, a small portion of your blood (less than one pint at a time), is drawn from your arm and passed through a sophisticated cell-separating machine. The machine collects the platelets and safely returns the remaining blood components, along with some saline, back to you. After the donation you can resume your normal activities, avoiding heavy lifting or strenuous exercise that day.

According to the American Red Cross: every two seconds, someone in the US needs blood. Erin has received 13 blood transfusions and 13 platelet transfusions. One of our friends, Amelia, had 3 transfusions just in her 1st 2 days of treatment. We have a friend Elena who has had multiple transfusions in just one week - and occasionally, her transfusion has been delayed because the blood bank didn't have the type of blood she needed. Or there's our cancer friend, Skyler, who has multiple platelet transfusions every day. And there are millions of other cases where people need blood. It is life-saving.

It takes 2 hours for Erin to receive her red blood transfusions, but it only take 30 minutes for someone to go through the donation process.  Last month I donated red blood with the Red Cross and it took me 7 minutes to fill the bag for a donation.
  
Some Facts About Blood Supply Needs and Blood Donation -from the American Red Cross
•One donation can save the lives of up to three people.
•The demand for blood transfusions is growing faster than donations.
•Shortages of all blood types usually occur during the summer and winter holidays.
•Less than 38% of the US population is eligible to donate blood. (So if you can, you can see that you're sorely needed!)
•It is possible to donate specifically only platelets or plasma. This process is called apherisis.
•Donated platelets must be used within 5 days of collection - new donations are constantly needed.
•Healthy bone marrow makes a constant supply of red cells, plasma, and platelets. The body will replenish the elements given during a blood donation - some in a matter of hours, and others in a matter of weeks.
•The average adult has about 10 to 12 pints of blood in his body. Roughly 1 pint is given during a donation.
•The average red blood cell transfusion is approximately 3 pints.
•A healthy donor may donate red blood cells every 56 days.
•A healthy donor may donate platelets as few as 3 days apart, but a maximum of 24 times a year.

You must be at least 17 years old, weigh at least 110 pounds, and be in good general health to donate. (Eligibility requirements may vary in some states and donation centers.)

Please, if you possibly can, get out and donate this holiday season. It's one of the best gifts you can give.

This Christmas, GIVE LIFE!

Red Blood and Platelets



**feel free to copy and paste this post onto your blog (I DID via- The Flamm Family) - spread the word!

Dancing for Rachel

Erin and our fellow AML friend Rachel (who is just a few rooms away) wanted to visit each other today, but they aren't allowed in each others rooms.  So, Erin decided to make a video of her dancing and we wanted to share it with Rachel and with all of you.  Erin says that she is a ballerina, just like Angelina Ballerina.


Erin's ANC is zero. 
Her white blood count is 0.4. 
She has 6 Monocytes. 
Her Platelets are 37
She will be receiving a blood transfusion today.

P.S.
Erin watched this video with me and she said over and over, "Erin is pretty.  Erin is pretty."  Then she put her two Fisher Price Little People she was playing with up to the computer and showed them how pretty she was when she was dancing.

Thursday, December 9, 2010

Christmas Pictures

Thank you to so many of you who have helped to cover Erin's wall with Christmas Pictures.  The mail is one of Erin's most favorite parts of her day.

Today was a surprise when she got a package with letters from Miss Heather Connell's 2nd grade class.  The pictures filled up a large part of her wall.  She handed me each picture and commented on each one.  This one is Santa.  This one is a reindeer.  Thank you!


and a few more THANK YOU's!

Thank you for the mysterious Christmas lights that magically appeared around our porch.
Thank you "office elves" for your gifts today.
Thank you for the mysterious giftcards that appeared in the mail today.

Wednesday, December 8, 2010

Day 27

Well, Christmas is just around the corner.  I am so anxious for Erin to be out of Primary Children's.  Despite all the decorations, the Christmas music, the beautiful tree in our house, the sugar cookies we decorated on Tuesday, it still doesn't really feel like it's Christmastime.  I am still thinking it's June and that we should be gearing up for adventures at Bear Lake.  I can't believe how time has stopped for me since Erin was diagnosed.  The patient board that lists all the patients in ICS is starting to be more sparse as families are going home and not coming in for treatments right now, probably so they can be home to enjoy Christmas.  Erin is still here.

Her ANC is zero.  White blood count is 0.5.  Monocytes are zero.  Bands are zero.  Zero. zero....zero....

Hopefully tomorrow . . . . *grin*

We found a pretty bad bruise on Erin's skin over her rib.  It probably happened when her platelets were 11 (normal platelets are 400 or so) at the beginning of the week.  It's hard to know how a busy two year old got a bruise.  Hopefully it will just go away quickly and not cause any problems while her ANC is zero.

When I got to her room tonight she wanted to know if I had a present for her.  I didn't bring her anything this time, so I gave her my make-up bag to play with.  She loves to play with my make-up.  All of my kids do, and for some reason it doesn't bother me that they use it.  I left her playing with it and then I went out to talk to the nurse.  After a minute the nurse and I peeked in on Erin through her window and we saw her pulling a chair up to her mirror, she climbed on the chair, and then she proceeded to use my eye lash curler to curl her eye brows.  Soon two other nurses joined us watching and giggling as Erin proceeded to curl her brows.  Erin looked over at us and climbed off her chair and started twirling around and around saying "I'm a princess."  We opened the door and cheered as she danced and twirled for us.  I made a little memory of that moment and I hope to keep it with me forever.  I loving making memories of my children. 

Many of the nurses told me that they saw Erin's tree at the Festival of Trees.  They all have commented on how beautiful it was.  It has been fun to tell them that the beautiful tree is waiting in our living room for Erin to see.

Well, here's the the end of day 27 and on to day 28 tomorrow.  We were told that this round would be through roughly December 8th-12th but it looks to me like she'll won't make it by the 12th since it usually takes 4 or so days for her ANC to be high enough to come home. 

Little Air Bear please make some neutrifils and get that ANC up!!

Tuesday, December 7, 2010

Day 26

Erin is 26 days into this 5th and final round of chemotherapy.  Wow, it's been long.  It felt like forever to even start the round and now it just feels like it's dragging along.  I am so very thankful that she has been so healthy throughout this whole round.

Just in case your interested in her blood work.  Her ANC is zero.  She has 4 monocytes which is better than zero, but still not really anything.  Her white blood count is 0.5 (normal is 6.0).  She got platelets on Sunday which put her platelets up to 128 (normal is in the 400's - I think).  Today her platelets are 98.  So, her body is just hanging out at zero. 

She is really happy and having such a good time with everyone who is taking turns staying with her.  She LOVES getting her mail each day.  Thank you so much for sending pictures for her walls.  She has loved all of the different pictures everyone has colored for her.

If you would still like to color a holiday picture for Erin you can mail it to:
Erin Hughes, Room 4412
Primary Children's Medical Center
100 North Mario Capecchi Drive
Salt Lake City, Utah 84113

Erin opening her mail

Running past her wall of pictures.



Sunday, December 5, 2010

Receiving the Tree

Erin checking out the Festival of Trees pictures on the blog.
Her white blood count is 0.6 (normal is 6.0)
and her ANC is still zero.
Her bone marrow is just so tired and it's taking a long time to recover from the five rounds of chemotherapy.  We hope to see her ANC coming up next week!


She was really excited to see the tree pictures.
When she saw the picture of her
in the red dress & white headband
my dad asked her, "who is that?"
She replied, "little air bear."


The arrival of the tree.
4 families helped pack up the tree in Layton
and deliver it to us in Logan.


They even vacuumed the rug.


They were so careful with everything.
Notice how the tree was all wrapped up.




 Cecily wanted to help with everything.
She directed them in where to put the bears.




The tree has cinnamon sticks on it
and it has given our living room a delightfully Christmasy smell.


Everyone who helped.
We hugged and cried when they left.


Cecily sat at the piano all day.


And she read stories to the sheep and donkey.


We just can't thank everyone enough.
We don't even know all of the people we need to thank.
So, I hope that you know how thankful we truly are for this sincerely wonderful gift.
It has brightened our Christmas and given us something beautiful to enjoy.
I know I've said this before, but I just cannot wait to have Erin come home and enjoy this.

In Church today I was struck by something in our lesson.
We talked about the gifts Christ has given us
and our gifts to Him.

Christ has given us so many gifts through Erin's Leukemia.  In the beginning, I don't think I truly realized that we would be so blessed for this trial.  Just after telling my Dad that Erin had Leukemia he hugged me and cried with me and told me that we would see miracles.  I really believe I have seen many miracles these past 6 months.  The miracles always seem to come after there's been a bump in the road.  Just when John and I feel like we can't endure this anymore, when we feel like the rains are descending, and the floods have come, and the winds are blowing, and beat upon our house (sometimes literally) something miraculous always seems to happen. 

We are always blessed for founding our lives on our Savior,
no matter what difficulties we face.

The world has overcrowded this special time of year with Santa, television commercials, billboards, and mailers that promote things that we really don't need.  The world is trying to make us focus on ourselves.  As I think about what my gift to my Savior would be I am overwhelmed with the fact, that all we have is already His, so what in the world can we even give Him?

All that I can think of is that
we can take our focus off of ourselves
and give our hearts to Him.

Thank you so much for sharing this burden with us.
Thank you for reading our blog and asking about Erin.
Thank you for praying and fasting for Erin.
Thank you for the gifts and memories you've given to us.
Thank you very much!

Playing Nurse

Erin giving her dolly a dressing change
She is doing the same things on her dolly that the nurses do on her to change the dressing on her central line.


Saturday, December 4, 2010

Festival of Trees

Over two months ago my friend, and old college roommate, Angela Hatch Maxwell (whose little brother Steve also happened to married my little sister Erin) asked me if she could do a tree for our Little Air Bear at the Festival of Trees.  I was so touched and cried and hugged her when she asked.  Little did I know how much effort she would put into the beautiful tree and the great gift that she and so many others gave us through that tree.

For those of you unfamiliar with the Festival of Trees, it is organized and orchestrated by volunteers through the state and relies on the generous support of those who decorate and purchase trees, wreaths, gingerbread creations, playhouses, centerpieces, and quilts.  More importantly, every penny raised helps children at Primary Children’s Medical Center.  The Festival raised $1,522,497.22 in 2009!

Here is Little Air Bear's Tree Display. 
It was located at E-9.


The whole display.


Erin's picture in her red dress and white head band.


The gorgeous tree.


Little Air Bear (red dress & white headband)
and Daddy Bear, reading the Christmas story.


Mama Bear overlooking her family.
She was even wearing high heels!


Cecily Bear playing her piano.


Caleb Bear reading books.


The Nativity. 
Thank you to Angela's brother-in-law who built the stable.


Thank you to everyone who donated and purchased the tree.
It was a HUGE surprise! 
We didn't even get it at first.  We were so clueless.
I thought we were just coming to check out the tree and see how beautiful it was, but in the end we found out that it is being delivered to our house on Sunday by UPS who donates their trucks for this cause.
I wish so much that Erin could have been able to come see her tree, it was such a magical experience.  But, I think she will love to see it at home and play with her little bear.  She is such a loved little girl.

And truly how thoughtful that the tree came with a little extra something.


Thank you so much!


*♥**♥**♥**♥**♥**♥**♥**♥*

Our wonderful night didn't end there.
At 11:20 pm we picked up my sister Annie from the airport.
She was the best missionary in the Sweden Stockholm Mission
Welcome home Annie!


I have felt the Christmas spirit so much stronger this year than ever before. 
It is through our trials that we are blessed. 
Blessed with friends, family, love, and most importantly,
an understanding of
our Savior's love for us!