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.

Thursday, September 30, 2010

2 Weeks

Erin has been at Primary Children's for round #4 for 2 weeks now.  Her ANC (immune fighter white blood cells) has been at zero for 6 days.  At midnight we checked her line repair and flushed one of the lines, it worked like a charm.  Her other line however wouldn't flush.   The nurse did a TPA, which breaks down any clots in her line, and by 4am her second line flushed just fine.

Her blood cultures today have come back negative for infection.  Yeah!  I hope it continues to stay that way.  She still has a clear runny nose and a cough, probably from the rhinovirus which is basically a common cold.  She hasn't had a fever since last night, and even then it wasn't high enough to give her Tylenol for.  Despite being woken up several times in the night, she woke up really happy.  We've had a great day together.  We have snuggled and played starfall.com on the computer.  We have watched Barney goes to school 3 times and the Care Bears 2 times.  We put up some fall window clings on the big window in our room.  It is such a joy to be here with Erin, she is such a sweetie and there is a wonderful peaceful feeling in her room.  Her Heavenly Father loves her.

Wednesday, September 29, 2010

Busy Times & Line Repair

Things have been busy.  I apologize that there haven't been updates on Erin's progress in the last two days.   I have been having a hard time finding time to write.  It seems that the three days that John and I are home together I just cram every minute with all the things I need to do for the entire week.  I really appreciate all of you who have brought in meals.  Seriously, just eliminating the time to cook has give me more time to accomplish other things.  Thank you!

Erin is doing better.  The blood work drawn today from her central line showed no sign of infection.  That is good!  Hooray! The sores on the top of her head are also looking much better.  My mom took great care of Erin for the past 3 days.  Her hospital room is nicely decorated with some window cling pumpkins and some streamers lining the cork board.  I made a big crawly spider in the parent break last Friday and it's stuck on the door by the window to scare away infectious things.  I also brought some window clings with me of fall leaves to put up tomorrow. 

Erin is currently taking a few medications through her IV.  She is taking Vancomycin (antibiotic) Fortaz (antibiotic), and Caspofungin (anti-fungal).  She is still taking Septra on Mondays and Tuesdays to prevent pneumonia.  She will take Septra until a few months after she is done with her 5 rounds of chemo.  She is taking Claritin orally before she goes to bed to alleviate her slightly runny nose so that she can sleep better.

Tonight was a bit of a scare.  My mom and the nurse found some blood on the floor and blood all over Erin's top and they realized that her central line had broken.  Again.  The tube was just hanging on by a little thread of tubing.  This makes the 6th time her line has been repaired.  The nurse clamped her line.  They had to take the dressing off of her central line, the head nurse repaired the line, then our nurse put on a new dressing and now Erin is asleep.  It wasn't as easy as it sounds though, because Erin was kicking and screaming through it all.  The nurse had to cut the tube off where the two tubes come together.  We have to wait 4 hours before we can make sure that her line is working.  So, at midnight the nurse will check her line and then we can start up all her medications again since they can't run through her line during the 4 hour break while the glue on the line dries.

Oh well, things are hard sometimes.  I have set myself up to expect that things will happen so it doesn't get me too down when something bad does happen.  Hopefully we only have less than 2 months left of this and hopefully her line won't need to be repaired too many more times.  The more they repair it, the higher they have to repair it.  Eventually they sometimes have to just take the line out and surgically put in a new line.

John's dad was scheduled for open heart surgery today (his second one) in Las Vegas, Nevada, but there was a hang up that two of the suction machines weren't working so the surgeon re-scheduled the surgery for Friday.  His father was in the pre-op room when he found out that they were going to postpone his surgery.  Please send prayers to the Hughes family for John's dad to have a successful surgery. 

Monday, September 27, 2010

Halloween Decorating

Erin has an infection somewhere in her body.  The blood drawn from both of her lines yesterday came back as showing infection.  She had a little fever yesterday, but it didn't get higher than 101 degrees F.  She had a little fever in the night, but from what I know she hasn't had anymore.  We aren't sure where the infection is, it could even be the little sores on the top of her bald head.  She is on the Vancomycin (antibiotic) and hopefully that will help her get better soon.  She's still in really good spirits, she's not as sick as she has been in the past.  Her ANC is still zero and we expect it to stay at zero for 2 weeks or more.

Tonight we decorated our house with our Halloween decorations.  Halloween in my favorite holiday, I know that may sound strange, but I just love dressing up and I love the spooky decorations and things.  Cecily & Caleb are really excited about Halloween and they could hardly contain themselves while we put the decorations up. 

It always seems to be the hardest having Erin gone when John and I are together in our house without her.  All day I've been expecting to hear her little sweet voice come around the corner.  There is an empty place in my heart when she is not here.  It's so lonely without her, even when there's commotion going on.  I really really really want her to be home for Halloween so that she can go trick-or-treating.  I just really want that.  I want her to be able to have a normal childhood experience, especially one that I love so much.

Sunday, September 26, 2010

What is ANC?

Absolute neutrophil count (ANC): The real number of white blood cells (WBCs) that are neutrophils. The absolute neutrophil count is commonly called the ANC.

The ANC is not measured directly. It is derived by multiplying the WBC count times the percent of neutrophils in the differential WBC count. The percent of neutrophils consists of the segmented (fully mature) neutrophils) + the bands (almost mature neutrophils). The normal range for the ANC = 1.5 to 8.0 (1,500 to 8,000/mm3).

Neutrophils are key components in the system of defense against infection. An absence or scarcity of neutrophils (a condition called neutropenia) makes a person vulnerable to infection. After chemotherapy, radiation, or a blood or marrow transplant, the ANC is usually depressed and then slowly rises, reflecting the fact that the bone marrow is recovering and new blood cells are beginning to grow and mature.

In practical clinical terms, a normal ANC is 1500 or higher; a "safe" ANC is 500-1500; a low ANC is less than 500.

(Information was borrowed from medterms.com)

Saturday, September 25, 2010

Adding it all up

For some reason I like numbers.  I'm not really good at adding things up in my head, but I like orderly things and I like to line things up.  I like to chart things and keep track of things.  Maybe that's why I have been keeping a little list of our stats.  I thought I'd share some of them with you.  It's sobering thinking about how much effort everyone has given to help us get to where we are.

As of September 25th
117 days since diagnosis
86 days at Primary Children's
29 days of IV Chemotherapy
Her ANC has been zero for 37 days
5 Central line repairs
3 EKGs
5 CT Scans
4 Bone Marrow Aspirations
4 Spinal Taps
9 Blood transfusions
8 Platelet transfusions
Highest Fever: 104.3 F (40.3 C)
22 different medications
Biggest insurance claim: $102,312.39
Smallest insurance claim: $0.30
Insurance statements I have filed away: 134

Weekend Pictures

Lately it's been hard to get a picture of Erin holding still.  When she sees me with the camera in hand she comes running, "let me see, let me see."  She is so into seeing herself on the screen after I take a picture, but lately I barely can get in a picture before she's too close.

Wearing her new Tinkerbell sunglasses.  Thanks Steele Family!


She has started hauling these drawers around so she can climb up to things.  Like I've said before, the hospital beds need to come with monkey bars and a slide.  I would also add, a ladder.


Perched in her cuteness.


Playing www.starfall.com on the laptop.  She really enjoys picking an alphabet letter to play around with.  She also loves her new starry cape and stunning silver dress complete with snaps on the shoulders so that it is easier to dress and undress when her tubes are hooked up.  A special thanks to Lynette Olson for making her this beautiful new dress-up.  I love her cheesy grin in this picture.


"I can get to the camera before you can take my picture!"


A beautiful bald head.  Really, she has a beautifully shaped head.


This one is my favorite.


Taking pictures together!

Friday, September 24, 2010

Stats

Erin's ANC dropped from 1500 on Wednesday to 100 today.  Crazy!

Her red blood is down to 22 so she is going to get a transfusion today.

Despite her way low counts she is wiggling and giggling and all over the place.  Right now she's dancing to the "red man" song on Peter Pan.  This movie would have parents banning it if it was made today (those mermaids are pretty risque too).  Erin would do even better today if her hospital bed had monkey bars and a slide. 

She just came over to me and this is what she said, "it's my computer.  Hey mommy, no no no.  Come on, come on. 1, 2, 3.  My computer.  1, 2, 3.  1 oreo, 2 oreo, eat eat eat.  Eat eat eat a cookie (sing songy voice)." Then she went to her phone, picked it up and listed off "cheese, oreos, sandwich. Goodbye."  Maybe she's ready for lunch.  I'll have to let her order her own lunch today since she seems pretty capable to list food off into the phone receiver.  Now she's rolling on my foam mat and saying, "look at me.  Ahhhhh, I'm falling."  She is such a ham. 

Thursday, September 23, 2010

Thursday Night Ramblings

When I arrived to my "shift" with Erin today she greeted me with a big hug around my leg.  What a sweetie!  We played hide-n-seek.  Lots of it.  We have been playing hide-n-seek for 4 months in a hospital room and today I am proud to say that I found a hiding place we have never used before.  The closet.  It's a very small closet, not really big enough to call a closet.  It's more of a nook.  It is just to the right of the TV and is triangular in shape and I can just squeeze in enough to still close the door.  Erin thought this was the best hiding place.  She told me to hide there each time it was my turn and then she hid in the corner, counted to three, and covered her eyes, only her eyes were open and her hands were more like visors on the sides of her head.  When it was her turn to hide, guess where she hid? 

The nook.

We had three fabulous visits today.  Btw, Erin's ANC is 1500 (as of Wednesday).  We'll get a new ANC reading tomorrow morning.  First, we had a visit from Amanda (mom of Amelia who has ALL) and her mother.  It was very nice to see them for a few minutes and it really brightened the day to have someone pop in unexpectedly.  They also brought me a pair of comfy Halloween socks (if you know me, then you know I love silly socks).  Later Cris visited, and of course Erin was ecstatic!  He was also so kind to play with her on Tuesday evening while my mom did a city council meeting via phone.  He always gets Erin laughing so hard - I swear she laughs harder with him then she has ever laughed with me.  Lastly, as I was forcing a teeth brushing on Erin, one of our new friends, Chelsea (mom of Cami who has ALL) visited and we had  a good talk about Leukemia and how it has changed our lives.  It has been a successful and busy day!

Erin is doing very well.  She is confined to her room because a test was done that showed she is positive for Rhinovirus.  The rhinovirus lives in our noses, hence the name.  But, seriously, I have seen some big noses in my day, but never one as big as a rhinocerous'.  It's such an odd name. 

As stated in the title of today's blog post, this is a rambling post.  Forgive me if the comprehension is difficult.

I love the Doctors.  They are so knowledgeable and they know how to convey that knowledge in a way that I can easily understand.  It is wonderful that they never seem to get too worked up or get overly concerned about little things.  And, so far, they have known all of the answers to my questions.  Last week, Dr. Verma came to visit Erin.  She said that she was actually working in the Lab that day, but she had heard Erin was here and she just really wanted to see Erin laugh so she stopped by.  What a kind gesture! 

I like to see the Doctors daily, but sometimes we are in the care of the Physicians Assistants.  They are helpful and they are always available when we need them.  It's not quite the same as the Doctors though.

I apologize in advance if you are currently sweating your way through medical school, but some of the Residents are the funniest.  On our last chemo round, I had a Resident fill me in with a really awful scenario (like, really awful) and in the corner of my eye I saw our nurse roll her eyes.  Then, the Resident examined a rash on Erin, left the room and I happened to look out the window on our door and I could see the Resident sitting at the nurse station using google images to find pictures of rashes. 

I really truly admire our staff and their dedication and support.  Seriously!  I don't want to sound flippant about the way that the medical profession works.  I know that these hard working Residents (and their eagerness to show what they've learned) will one day become the amazing skilled doctors that I appreciate so much.  We all have to start somewhere and we're all working our way through this life, learning as we go.  It's been a good learning experience for us.  I have learned that a second opinion is always worth it.

It reminds me of when I was 16 and I taught my first piano lesson.  I often think back to all the wrong things I said or did. How I wish I had the knowledge I have about music now, back then. I hope that people haven't been offended about my mistakes. 

Since my first days here at Primary Children's I have tried to have a good attitude with the staff.  In our first week after diagnosis I happened to be in the laundry/kitchen and there were 3 parents in there ranting and raving about the poor care they felt they were receiving.  As I sorted my laundry they talked about how they had told off nurses and how they were going to keep on giving the staff a bad time (there are some words that they used that I cannot repeat).  It was really a downer that they felt that way about the staff.  I made a commitment then and there to always be appreciative of our care, even if someone messed up.  I have always prayed to know which course to take on important medical things.  There have been times I have laughed about some of the care we've received (like googling images of rashes) because I know that ultimately everything boils down to the will of the Lord.  Erin's life is in His hands and I truly trust Him to place us in good hands here at Primary Children's.  It is a comfort to know that He is the one to whom I can trust in.

Light The Night Walk



Four months ago we were suddenly thrown into a new life.  John and I haven't felt much like opening up about Erin's Leukemia to the public, but we are breaking out of our shells and have decided to participate in cancer events to help heal the ache in our hearts.  For our first activity we plan to participate in a walk and carry illuminated balloons, in honor of Erin, in the Leukemia & Lymphoma Society's:

Light the Night Walk
Saturday, October 9th

We would like to invite all of you to join
the Little Air Bear team and walk with us.
We also invite you to donate $1 or more
 to help support blood cancer research.

Saturday, October 9th
Check in: 5:30 pm
Opening Ceremonies: 6:15 pm
2 mile walk: 7:15 pm
Sugar House Park
2100 South 1500 East Salt Lake City


Light The Night Walk is The Leukemia & Lymphoma Society's evening walk and fundraising event. It is the nation's night to pay tribute and bring hope to thousands of people battling blood cancers and to commemorate loved ones lost.  Light The Night Walk events are evenings filled with inspiration. During this leisurely walk, walkers carry illuminated balloons - white for survivors, red for supporters and gold in memory of loved ones lost to cancer - thousands of walkers - men, women and children - form a community of caring,
bringing light to the dark world of cancer.

Wednesday, September 22, 2010

Contact Information

Erin's hospital contact information is

Erin Hughes, Room 4414
Primary Children's Medical Center
100 Mario Capecchi Drive
Salt Lake City, Utah 84113
 
You can also email her, click here for that link.
 
It is estimated that she'll be here until October 20th if she is there for 35 days (which is the average stay for round #4 of chemo), but she has always finished her stays early, so I'm shooting for her coming back home around October 14th.

Monday, September 20, 2010

Pictures

Pictures from Friday

Here is 60 ml of ARA-C.  
It runs for 2 hours, 2 times a day.


She wasn't cranky like the picture below shows.
Maybe she was just sick of me taking pictures.
You can see all the tubes going into her.
I think that she had the Caspofungin, ARA-C, and Fluid running.


Falling asleep while the chemo is going.


All done and entranced in a movie.


All dressed up and unhooked from the tubes and IV pole.
Off we go to play in the halls.

Monday

Erin only has 2 days of chemo left!!  So far, so good.  She has done really well with the ARA-C and just got her last dose of that this morning.  She has 2 more days of the Mitoxantrone.  Last night I called and had a chat with her nurse and he was really happy with how well Erin was doing.  My favorite part was when he (nurse Manny) told me that "she had an outstanding pee output."  Yes, they monitor how much pee and poop she does.  Sounds fun huh?!

They actually weigh the diapers to determine the output since she isn't potty trained.  It is really good that she isn't potty trained because it's much easier to take care of her with a diaper on.  And, we don't have to get her out of bed in the night to make her pee in the toilet.  They fill her up with fluids that run 24 hours a day so that she just pees all that chemo out.  We have to be really careful about changing her diaper by wearing chemo gloves so that we don't get anything on us.  It's sad that we take all these precautions around the chemo while she is having it running through her bloodstream.

Her ANC is 2000 today!  Her platelets have dropped to 174. (they were in the 300's when we arrived last Thursday).  She gets a platelet transfusion usually when they drop to around 15. If you have the opportunity to donate blood or platelets please give it a go.  Erin has had around 14 blood/platelet transfusions. 

She is able to go out of her room and play, but she is not allowed to leave the Immunocompromised Unit (ICS).  When her ANC drops below 500 then she is not allowed outside of her hospital room.  She is happy and I hear that she is running up and down the halls today.  She has also been riding a little tricycle and having fun in the toy nook. 

Thank you so much for your prayers and support.  We are so grateful for all that you have done to make things easier for us.  Last week John found a surprise in his work mailbox, 2 gift cards to local restaurants in Logan.  It was such a treat!  We want to say THANK YOU to the anonymous gift givers and let you know that we just felt so loved that you were thinking of us!

Saturday, September 18, 2010

It's the Weekend!

The only way we know it's the weekend here is that the halls are much more empty and the cafeteria is less busy.  Other than that, it's just another day.

Yesterday when Erin woke from her nap she woke up with a croupy cough.  It was instantaneous.  We got the Nurse Practitioner here right away and she listened to her, we gave her a saline mist and about 15 minutes late she was back to normal.  The same croupy cough thing happened during her last hospital stay.  It is very strange, maybe an allergic reaction to the chemo?  It is so odd that it instantly comes and then immediately leaves.  She sounded so wheezy and sick and then she was totally back to normal. 

Today I woke up to see Erin sitting up in her bed.  She gave me a huge smile and a happy wave.  Waking up in the mornings (when she is happy) is seriously one of the most golden experiences here!

She had her 4th dose (of 8) of the ARA-C, that means she's halfway through with her ARA-C.  Yeah!  She still dislikes her eye drops and she isn't keen on being touched over and over by the staff.  She has not really been herself today though.  She seems more tired and less active.  When I took her out in the halls to play she didn't want to run.  She didn't really get excited about anything.  Maybe the fun of playing in the halls has worn off.  After all, she has been here FOREVER!  She rode a tricycle for a little while and then I brought her back in her room.  We started watching The Swan Princess and she fell asleep in the beginning.  I guess she is pretty worn out. 

My Dad is coming to stay with Erin and then tomorrow my Mom will be coming for a few days.  I will be back on Wednesday evening to see my little air bear.  She will be about through with this round of chemo when I get back.  I very much dislike having our family spit between Logan and the hospital.  The night after Erin and I left for the hospital, Cecily (5 years old), told John that she was sad that Erin was gone and that she missed her.  She is such a tender sweet big sister.  There is something that we are to learn from this experience.  We have always valued our family, but this experience has brought us all closer together than I could have imagined. 

Friday, September 17, 2010

Gemtuzumab

I found some interesting information today.  I have previously discussed that Erin is part of a clinical study on the use of a new (clinical trials started in 2000) drug Gemtuzumab (also called Mylotarg).  She is part of the study, but she was not chosen to receive the new drug.  The drug was originally given to people over the age of 60 who had AML but they could not do another course of chemotherapy.  In 2004, the okay was given to combine Gemtuzumab with ARA-C and Daunorubicin (the other two chemotherapy drugs that Erin takes) and give it to AML patients under the age of 61.

After much prayer, John and I both felt so strongly that we shouldn't give her the Gemtuzumab.  Now I know why!  I read a few articles this afternoon and found the following information:

"June 21, 2010, Pfizer (drug makers) voluntarily withdrew Mylotarg from the market at the request of the US FDA because a post-approval clinical trial raised new questions about the drug's safety and effectiveness. The trial showed that adding Mylotarg to existing chemotherapy for the treatment of acute myeloid leukemia provided no benefit and even showed a higher death rate."

A few detailed articles on Gemtuzumab/Mylotarg can be found here and here.

Details on Chemotherapy Round #4

Intensification Chemotherapy, Round 4 of 5.

This round of chemotherapy has an average stay of 35 days.  Chemotherapy will last 6 days so she will spend most of her time waiting for her blood counts to recover from the chemo.  Erin will receive ARA-C 2 times a day for days 1-4.  She will be given Mitoxantrone (I hear it's bright blue) 1 time a day on days 3-6.  We are started her first dose around 8:00 pm last tonight.  The Mitoxantrone is a chemo drug we haven't taken yet, but it is similar to the Daunorubicin that she had before.  In a few posts ago I mentioned that we were part of a clinical study on a new drug, Gemtuzumab, but that she won't be getting the new drug, she is just part of the study.  I know it was right that we weren't supposed to give her Gemtuzumab, but at the same time I wonder what kind of side effects it would have on her if she did have it.  They give Gemtuzumab on day #7.

I talked to Dr. Barnett about the long term treatment that Erin will have with her AML.  It may seem strange that I haven't asked many questions about her future treatments.  I have not asked because there is so much to take in for each of her 5 treatments that we just couldn't add more details (or emotions) to what we have been slowly learning and processing.

When Erin is done with her chemo (anticipated to be before the 1st of December) they will take out her Central line.  YES!  That was the best news.  With her central line in place she cannot take a bath (which also means, no swimming).  It is such a pain to take care of her line.  I constantly worry about it getting broken.  It is also so invasive and people can see her tubes sticking out and I guess I'm a bit self conscious about that.  Being bald is something for people to stare at too.  I guess it's just that I really don't like having so many things on her outside that make her stand apart from a normal two year old. 

When her treatments are done, then she will come back to the Hematology Clinic at Primary Children's once a month to do blood tests.  The second year after treatments she will have Clinics every other month.  The third year after she will go back every 3 months, and so on until 5 years.  After 5 years she will only come back once a year until she is about 18 years old.  If she stays in remission for 5 years after her treatments then it is very unlikely that she will ever relapse.  The next 5 years will be a little nerve racking for me, but I'm thankful that I have the Spirit to comfort me when things get tough. 

If she does relapse, then she will have 2 rounds of chemotherapy and a bone marrow transplant in her future.  The bone marrow transplant can come in 3 different forms from a perfectly matched donor- (1) actual bone marrow from a donor, (2) stem cells from a blood draw from a donor, or (3) stem cells from chord blood.  It was all very interesting to understand how it all works and I am so thankful that Dr. Barnett took up so much of his long day to talk with me. 

Erin's about to receive her ARA-C this morning.  She is eating her breakfast and watching TV.  I woke up this morning to Erin sitting on her bed furiously waving at me.  She is such a sweetie.  It is a wonderful experience to take care of her while she is here.

Thursday, September 16, 2010

Round #4 - Day #1

Chemotherapy Round #4 here we come!!

We left Logan at 6:03 am this morning


We arrived with enough time to play.
Erin is quite the dancer



Watching the fish in the fish tank.


Time for the CT scan.  This was an ordeal.  We tried to do it without sedation because we were told she couldn't be sedated for the CT scan since she was later being sedated for her bone marrow aspirate.  After 2 hours and 15 minutes of waiting we ended up getting an okay from the anesthesiologist that she could have a mild sedative Versed to calm her during the CT scan and still be able to be sedated later for the bone marrow aspirate. 

CT scan results were clear.
She was being tested for a possible fungal infection. It does look though that one of her chemo drugs ARA-C could possibly be giving her some bronchial issues.  I'll go into that later if it comes up again during our stay - right now we're not concerned about it, but after this round of chemo we'll know more about if it's caused her issues.

"The Big O"
That's what we call the CT scanner.


We were rushed to the Hematology Clinic by 10:00 am (an hour late) and they whisked us in and out of here so that we could make it to the RTU (Rapid Transit Unit) for the bone marrow aspirate and spinal tap appointment at 10:30 am. 

Here Erin is wearing a hat
that she choose off of the hat tree in the clinic.


It was a treat to run into Amanda, a facebook friend.
We are part of a group that is made up of moms in Utah that have cancer fighting kids.
Her daughter Amelia who has ALL (Leukemia) was also getting ready for a spinal tap.


Erin did really well with her sedation. 
When she woke up she immediately wanted the orange Popsicle we had promised her. 
It is so hard to have a 2 year old fast all morning.

Her spinal tap fluid is clear.  They drew it out, looked at it under a microscope and found no sign of leukemia cells.  Since day one we have not found leukemia cells in her spinal fluid.  After they took the spinal fluid they shot a dose of her chemotherapy drug ARA-C into her spinal fluid.  Her chemotherapy treatments are normally strong, but they are not strong enough to work in her spinal fluid, so that is why they did a direct shot into her spinal fluid.  She also had a dose of Zofran given while she was asleep so that the ARA-C wouldn't make her nauseous.

The bone marrow results will come on Monday/Tuesday.  Last time she had 0% Leukemia cells in her bone marrow.  She had 80%-90% Leukemia cells in her bone marrow when she was diagnosed.  This means that she is in remission for her Leukemia, but we still finish out all the treatments so that it hopefully will not come back.

She was a basket case by the time we go her situated in her room in ICS (room #4414).  She was so tired and cranky and hungry, but I couldn't do anything to make her happy.  I decided that now was the time to get her dressing changed on her central line since she was already crying and flailing.  Below is a picture of her central line (Broviac) and it's two lines.  She wasn't happy that I took this picture, but I wanted a picture of it for her to see when she grows older and doesn't remember it. 

I ended up just getting her to sleep before we could feed her because she was just so worn out.  I napped beside her for 15 minutes and then I went to the car and brought up 2 wagon fulls of the stuff we brought (toys, books, clothes, etc.)


She woke up at 2:45 pm and I was informed that she needed to go downstairs to get an EKG.  The EKG is to monitor her heart while she does these intense chemotherapy treatments.  The EKG results came back normal, that is such a relief.  She got to ride in a wheelchair to Cardiology.  Prince Charming and Cinderella came along (in her hands).


After the EKG we spent a few minutes watching the carnival set near the south entrance to Primary Children's. 
It is so cool!  A must see!


We got upstairs and I had a good 30 minute chat with Dr. Barnett.  I just think so highly of him!  I will give the details of our chat in another post.  Erin watched a Strawberry Shortcake movie 3 times and we ordered dinner (cheese pizza, french fries, & fruit snacks). 


We started our day 13 hours ago and we're finally getting a chance to sit and breath.  Erin is being filled up with fluids in preparation to starting her first dose of chemotherapy.  We have a wonderful nurse (Marie) and techs (Tommy & Ana) today and they have taken good care of us.  Coming back to ICS was like coming back home.  It's comforting knowing that we know so many of the nurses and techs so well (I had to tease nurse Joyce that they are serving salmon tomorrow and I hoped she would come in our room to smell it).  It is like a home here for us.  I am thankful that it feels like a home away from home, even though it is a hospital. 

We are in good hands.  Thanks for checking in on us!

Wednesday, September 15, 2010

Just a Reminder


 "Yea, and how is it that ye have forgotten
that the Lord is able to do all things
according to his will,
for the children of men,
if it so be
that they exercise faith in him? 
Wherefore,
let us be faithful to him."
1 Nephi 7:12


This scripture jumped out at me last night during my scripture study.  I seem to need daily reminders that the Lord is mindful of us. Why is it so easy to sometimes forget that the Lord can do all things? I didn't realize I had forgotten.  This scripture reminded me that I had.  Our faith needs to be replenished every day.

Tuesday, September 14, 2010

Every Day

As I was tickling Erin before she went down for her nap I looked at her and thought about how much she has changed since June 1st when she was diagnosed with AML. She has gone through so much and changed in some ways. Here's a picture of her when she was first diagnosed.



I had almost forgotten what she looked like with hair.  She has grown taller and her round cheeks are gone.  Her skin color looks pretty pink and normal now, not so translucent as before she was diagnosed.  She doesn't bruise easily anymore.  Before she was diagnosed she always felt so fragile and now she is starting to feel strong, like a two year old should feel.  She has so much more energy now and she really has developed a very strong will through all of this. 

It's been 106 days since Erin was diagnosed.

 Every day I am reminded that she has Leukemia. 

Every day I am thankful that I have my little air bear
to snuggle, tickle, and chase around the room. 

Monday, September 13, 2010

Childhood Cancer Awareness

Maybe it's because cancer scares me that I haven't really looked too deeply into it or gotten involved in any groups.  It has taken me 3 months to finally feel like I can get out and meet others who have Leukemia.  Sometimes it is just less heart wrenching to keep everything as if nothing ever happened.  But, I have finally given in and made friends who also have children who have cancer. 

My friend Chelsea has a beautiful 5 year old daughter who has Leukemia (ALL - Acute Lymphoblastic Leukemia) and she has been active in learning about cancer.  I admire her courage to step up and get involved.  She has been a good example to me.  She shared this video on her blog and it just touched me so deeply that I wanted to share it with you.



September is Childhood Cancer Awareness Month! 
You can learn more at Cure Search.

I don't know if I've ever talked about how we are part of a clinical study through Primary Children's Medical Center and other participating Children Oncology Groups.  The day Erin was diagnosed we were given a briefing and a big stack of papers about a clinical study on using a new chemotherapy drug to fight Acute Myeloid Leukemia.  John read meticuoulsly through the study (highlighting his questions) and I browsed over most of it looking for things that I understood. 

To participate, we signed some paperwork, but those who received the new chemotherapy drug were chosen through a lottery.  We both felt strongly that we should participate in the study, but neither of us wanted to try out the new drug on our daughter.  We prayed a lot about it.  We decided it was right to participate in the study.  A few hours after signing the papers we were informed that Erin was not chosen to receive the new chemotherapy drug.  We are thankful that Erin is part of a study to help other's fight Acute Myeloid Leukemia.  We are thankful that there are people out there who are helping us fight cancer.

Saturday, September 11, 2010

Erin and Her Family

"The love of a family is life's greatest blessing."

I am dedicating this post to my sweet Erin and her family.
We love to be together, which is a good thing because
we plan to be together forever.
The following are a few pictures of Erin
enjoying time with her family.

She loves to play the piano like her family.
She likes to go on walks,
especially ones that overlook beautiful Bear Lake 



"No other success can compensate for failure in the home."


We believe the greatest blessing God gives us
 is the ability to return to live with Him
in Heaven with our families.


"Happiness in family life
is most likely to be achieved
when founded upon the teachings
of the Lord Jesus Christ."


"Children are an heritage of the Lord."
-Psalm 127:3


"In a world of turmoil and uncertainty,
it is more important than ever
to make our families the center of our lives
and the top of our priorities.
Families lie at the center of our Heavenly Father’s plan."

September 11th

Nine years ago today I was a missionary in Leeds England.  My companion and I had spent most of the morning at the church having interviews with our Mission President.  We spent the afternoon trying to contact people, but the streets were empty.  At around 6:00 pm we arrived at our dinner appointment where I was informed that the twin towers had been hit by airplanes.  It was sort of like a dream for me.  In fact, I didn't even really have a chance to mourn the devastation that it caused.  I have always felt a little bit bad that I never had a chance to really "experience" 9-11. 

This day is a reminder of those who have suffered the loss of loved ones, whether it is through terrorism, heath problems or by accident.  This last week I have been thinking a lot about my little air bear and her future.  I don't know what her future will be.  Sometimes that really scares me.  I try to not think about it.  I don't know if I am strong enough to suffer the loss of a child. 

Yesterday I felt a little down about Erin's AML.  For some reason I am always more down about her AML when she is home between stays.  Maybe it's because when she is home we "almost" feel normal, like nothing ever happened.  And then, I see her little bald head and her tubes coming out of her shirt and I am reminded that she has a very serious problem. 

I spent most of the morning trying to not think about Erin as I packed up our clothes to come to Bear Lake for a little family vacation.  Before we left, I picked up the mail and grabbed a letter that had arrived from my sister Annie who is serving a mission in Sweden.  As we were driving to the canyon to head to Bear Lake I pulled the letter out and asked my mom if she wanted me to read it to her.  We were only into the first page of the letter when we looked at each other and we were both crying. 

Without going into the personal details of the letter, I would like to share how thankful I am for the Spirit and how it can touch our hearts and soften the pains that we feel.  I am also very thankful for a living Prophet and the 12 Apostles that are here on earth and who are God's spokesmen.  It is such a beautiful blessing to have a Prophet who talks with God and how we can have direct revelation on what our loving Heavenly Father wants us to know.  I am looking forward to watching General Conference the first weekend in October and hearing their prophetic counsel on how we can be happy in this life and how we can be prepared for eternity.

It was such a blessing for John and I to receive Annie's inspired letter.  At bedtime I shared Annie's letter with John and he also had a beautiful experience with the Spirit and we both had a greater understanding of our Heavenly Father's love for us.  We are God's children.  He truly knows each of us.  He loves each of us.

Thursday, September 9, 2010

Being a Kid Again

Erin's ANC is 2400 today!

On June 1st, when Erin was diagnosed with AML,
her ANC (fighter white blood cells) was 900.
The highest ANC reading we have had since diagnosis is 1400.
It is such a blessing to have her home.
It is a blessing that she can feel like a normal kid for awhile.


Grandma & Grandpa Hughes came for a little visit.
We loved relaxing with them.


Our family has been on a lot of walks around the neighborhood.
Erin is always saying, "let's go outside."


Dad is the best at pushing the kids in the swings.


To kill time while we waited for Erin's repaired line to dry,
we spent 4 hours at SLC's Hogle Zoo.
The carousel seems to be the highlight of the zoo!



This afternoon I talked with one of our nurses at Primary Children's and she told me that our team of doctors are really impressed with Erin's blood count recovery.  Her blood work is normal.  Normal like a normal healthy person. 

Because she is doing so well, they would like to admit her back into the hospital earlier than planned.  We are scheduled to have a CT scan, Bone Marrow Aspirate, and a Spinal Tap done on Thursday, September 16th and then, that afternoon, Erin will be admitted for her 4th round (of 5 rounds) of Chemotherapy.  As odd as it may sound, I asked the nurse if we could be admitted earlier.  We just want to get this all over and done with.  Doctor schedules won't let us in any earlier, but the 16th is better than the 20th.  

It is being together as a family that helps us heal.  Erin is completely joyful today.  She is so energetic and happy.  She is a different kid than she was just a few months ago.  Thinking back to when she was an infant, we used to rave about how we were the most amazing parents because our baby not only began to sleep through the night at 3 weeks old, but she also took so many naps during the day that she was hardly awake - ever.  She continued this for most of her life, sometimes taking 2 naps a day and still sleeping 11 hours in the night.  Now we know that she was just so worn out because the Leukemia was taking over.  It is so much fun getting to know our new little energetic Erin!

I am so thankful for all of your prayers and the service you have so graciously given to our family in this difficult time.  Thank you!

Wednesday, September 8, 2010

The Safety Pin

It all started with a safety pin.  Why am I so obsessed about that silly safety pin when it was over a month ago that it messed things up? 

We are always trying to come up with ways to keep Erin's central line tubing out of the way.   The purpose of the safety pin was to keep the line nicely held back inside her hospital jammies.  About a month ago one of my favorite nurses thought up the idea, she place the central line tubing through the safety pin.  It held the line nicely out of the way for two days. 

Then, it was time to change the dressing on Erin's central line.  I went to remove the safety pin and a pit formed in my stomach when I realized the tubing on her line has lodged itself inside the head of the safety pin.  We had to pry the pin off the tubing with pliers.  We examined the tubing and found the smallest of small nicks in her line.  Nothing was leaking from the line, but the charge nurse felt like it should be replaced.

The problems with Erin's line all started with a lousy safety pin.  Sometimes I just want to go back to that day and wish that safety pin away.  But, I can't. 

In the early hours of Labor Day morning John informed me that Erin's line was leaking.  We sort of despise that line and it's constant issues (stupid *pardon my language* safety pin).  It's been repaired 4 times.  Each time the staff has to repair the line it has to be repaired higher and higher.  Eventually some lines have to be surgically removed and then put back in (I pray that never happens to us).  I am thankful that the said safety pin issue nicked the lower end of her line near the end of it, below the clamps.
We got up Labor Day morning thankful that it was a holiday, and then we got our family ready to go to Primary Children's to have the line repaired.  We arrived at Primary Children's around 2:00 pm.  The charge nurse told us that there just wasn't enough room to repair the one line and she said that she would have to cut off both lines and repair it where the two lines start.  I could tell from John's expression that we were both thinking the same thing.  No way! 

I said, "are you sure?  It looks like there is enough room to repair it without having to cut off both lines."
She was skeptical, but she said she would try.  In any case, if it didn't work then we'd just have to start over and cut off both lines anyway.  Erin was not happy to have to lay down on the hospital bed and be examined.  We had to sort of wrap up her legs in a sheet and I held her arms down because she was thrashing, kicking, and screaming so much.  It's silly that she was even upset about it because when we repair a line we don't even touch her skin.

The nurse cleaned the line, snipped it off and began repairing it.  When it was glued together and a sheath was pushed over the line to keep it in place the nurse was amazed that it had worked.  I call it divine intervention.  Seriously, if that repair had even been a millimeter higher we would have had to cut off both lines. 

We know that next time the line needs to be repaired we will have to cut off both tubes.  It takes at least 4 hours for the line to dry and in the meantime the line cannot be used.  If/when we have to cut off both lines, that means that Erin cannot receive any medications through her line during that waiting time.  It is nice that she has 2 lines so that while the repaired line is drying we can still use her other line.  This will not be the case when we have to chop off both lines next time.  If her line breaks during her next chemo treatment then all her medications get pushed back while we wait for both lines to dry.  It just complicates thing.  Oh, all the worries that safety pin has caused us. 

It's crazy how such a little thing as a safety pin has been able to bother and annoy us.  It's sort of like how we can fret and worry over such a little thing as "a mote that is in thy brother's eye."  Do you have any idea how small a mote even is?  It's about the size of a speck of dust.  Sometimes we find ourselves so bugged about the little things others around us do.  We can nag and pester them of seemingly small things and yet we fail to look within ourselves at the beam (think of a gymnastics balance beam) that is obstructing our eternal salvation.  Why do we do this?  Doesn't it just seem like we know how to fix other's problems so easily, yet it is so difficult to fix our own?  What is it that we need to work on so that we can be more fit for the kingdom of God?  I hope that all those motes (and safety pins) out there are not bothering me as I sometimes let them.  I hope that we can all be better people today.

Tuesday, September 7, 2010

Medications 101

Medications.  Blah.  This time around we brought Erin home with more medications than before.  The pharmaceutical guy from our Home Health Company dropped off a cooler full of medications and a stack of boxes of supplies.  I should have taken a picture - sorry.  There were 90 saline flushes that we use to flush her line before and after a medication is given, we've almost used 1/2 of them and it's only been 3 days. She is going to be home until Sept. 20th. We get to keep her for 2 weeks because the doctors wanted to have all her medications run their full course and hopefully get all the infections out of her system.  I have made this rather detailed post so that in future days we can look back and say, "phew, remember those days.  I'm glad they are over."



This little bottle of Voriconazole (Vfend) costs $700.
It will last us 2 weeks.



Here Erin is watching Angelina Ballerina and trying to keep still while she has her pump going with Vancomycin.  You can see one of her lines hooked up to a tube that runs into this pump.  We've tried putting the pump in a backpack and having her wear it around, but she hates that.  We have resorted to just keeping a really REALLY close eye on her while she is hooked up so that she doesn't go running off, have it get caught on something and then rip her line out.  That would not be nice.

Here is a schedule of our medications over a 24 hour period:

8:00 am Voriconazole (oral)
8:00 am Septra (oral, only on Mon. & Tues.)
11:30 am Atarax (we slowly push it into her line over 3-5 minutes)
Noon Vancomycin (given over 2 hours with a pump)
2:00 pm stop the Vancomycin
2:00 pm start Caspofungin (runs for 1 hour with a pump)
3:00 pm stop the Caspofungin
5:30 pm Atarax (pushed over 3-5 minutes)
6:00 pm start Vancomycin in the pump
8:00 pm stop the Vancomycin
11:30 pm Atarax (pushed over 3-5 minutes)
Midnight start Vancomycin in the pump
2:00 am stop the Vancomycin
5:30 am Atarax (pushed over 3-5 minutes)
6:00 am start Vancomycin in the pump
8:00 am stop the Vancomycin
Repeat

I think we have to do the Vancomycin for 2 more days and then things will get easier. We look forward to getting a full night's sleep.



Here is our fridge and our medications
 in the plastic bags on the top two shelves. 
The big tubes of Vancomycin have 60 ml in them.
As you can see, they are humongous. 
The Atarax and Caspofungin are also in the bags in the fridge. 



What are all these medications for?

Here's your answer.

Voriconazole (Vfend) - a preventative medication to stop her from getting a fungal infection.

Septra - a preventative medication to stop her from getting Pneumonia

Vancomycin - Is used to kill the strep bacterial infection that was found in her blood.

Atarax (also known as Hydroxyzine or Vistaril) - Relieves Erin's allergic reaction (Red Man's Syndrome) to the Vancomycin

Caspofungin - used to stop a possibly growing fungal infection.  (Her latest CT Scan showed nodules on her lungs which is a sign of a possible fungal infection.  She has another CT scan scheduled for Sept. 20th)

You survived Medications 101!!  Pat yourself on the back!

Erin's Life At Home

Parenting a two year old comes with the usual challenges, mostly which stem from the little person (who thinks they are big) wanting to have independence.  Yet, they still struggle with needing total dependence upon you as a parent.  Because of Erin's AML and her hospital stays, she has developed some strong coping skills that have helped get her through her challenges.  But, once we come home from the hospital we have to start all over with how to raise Erin.

There are rules that we have at the hospital and there are rules that we have at home.  For instance, throwing all the food off her plate is only acceptable in the hospital.  But at home it's totally off limits.  We don't count, reprimand, or put her in "time out" when she's at Primary Children's, but at home we do.  I'm sure it's so confusing for her to transition back home. The hard part, is that once we get her back into our home routine, she is ready to be admitted back into Primary Children's.  It's a vicious cycle.  Sometimes I wonder if it's really worth it.

The first day that Erin comes home is always the worst.  I know that sounds crazy.  We look forward to bringing her home, we love having her home.  But, she is always a basket case.  For example, we sat down for dinner Saturday evening and just before the prayer on the food, our three year old son started wiggling and standing up on his chair.  Erin stood up in her chair, pointed her finger at him and shouted, "Sit down Caleb."  Well, we all know who is the boss at this house.  Well, we're on day 3 of having Erin home and we're now down to just a few finger pointing scoldings (and other tantrums) a day from her. 

Sometimes I think about how different life is when a parent has only a two year old at home and no siblings for that two year to interact with.  Well, Erin is like that.  Sometimes she's an only child, and then sometimes, she's the third child.  Where is the balance?  I'm still trying to find it. 

I am so thankful that Cecily and Caleb are able to transition well to having Erin home.  They do such a good job.  So many times they have to wait longer for things they need, or they have to take the brunt of Erin's tantrums.  They are always so patient and loving with her.  So often we have seen both Cecily and Caleb willingly give up something to make Erin happy.  We can really feel how the Spirit is helping us to have less contention here at home while we go through these awkward transitions.  I wouldn't wish this upon anyone.  It's like emotional whiplash, but it keeps us on our toes.

Shoes

Erin's entertainment.

Sunday, September 5, 2010

Music Therapy and Going Home

We wanted to post some footage of Erin's last few days
from round #3 at Primary Children's.
Here she's jammin' along with the Music Therapist. 
As you can tell from the video,
she loves it when the Music Therapist comes. 

As for the stickers on her head . . .
she pulled them off of a picture on the wall
and put them on her head. 
I think a bald head is a good place for stickers too.




GOING HOME! 
Once Erin sees the wagon come in our room
she knows that she gets to go home.
Erin sat in this wagon in her room
for 2 hours waiting and waiting
for the Doctors to give her the "okay"
to go home. 

  

Saturday, September 4, 2010

300

Our Little Air Bear's ANC is 300!

Such sweet blessings.

John is bringing Erin home this evening! 
We are so excited to be together again.

Friday, September 3, 2010

Good Days!

Yesterday Erin had a really rough day.  She was so crabby and she kept throwing anything she could get her hands on.  She didn't want anything, yet she wanted everything.  She had a little nap from 11:00 am to 1:00 pm.  Her nurse called me at home and asked me for John's cell phone because she said that Erin was really really mad when she woke up and she needed to find John (he was just downstairs in the hospital).  He got her back to asleep at around 4:00 pm for another nap.  At 6:30 pm John decided to pray whether or not he should wake her up or let her sleep through for the night.  He was worried that if he woke her up she'd be a monster.  He was also worried that if he didn't wake her up that she might wake up at midnight starving and be a doubly angry monster.  He decided it was right to wake her up. 

At 6:50 pm he woke her up and gave her dinner, dressed her in her jammies, read her stories, and by 8:10 pm she was back asleep in bed.  She slept through the night and woke up at 7:30 am this morning happy as a lark.  Looks like she needed some good sleep.  We were thinking that her body must have been so tired from the high fevers and her heart must have been tired from her high heart rates while she was fevering.  Sometimes her heart rate would get up to 180 when it should normally be around 120.

Erin's ANC is 200 again today.  Dr. Fluchel came in and told John that if Erin's ANC comes up to 300 then she'll be able to come home.  We are very excited.  It is amazing to us that she can get so sick and then her ANC starts coming up and miraculously she rapidly improves.  If she comes home tomorrow she'll have been at Primary Children's for her 3rd round for only 23 days instead of the estimated 28 days.  Wahoo!

Thursday, September 2, 2010

Blessings

Erin's ANC is 200!

Another little blessing.

Wednesday, September 1, 2010

CT Scan Results

We got the CT scan results back and there are nodules on her lungs, but they are not very big so that is a good thing.  The doctors are always worried about fungal infections so they are starting her on Caspofungin (anti-fungal) today.  I think that she is getting better.  My mother said that she was really happy this afternoon.  John is very excited to be spending the next few days with Erin.  We are being greatly blessed.