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.

Tuesday, November 30, 2010

Something to Give for Christmas

Brielle (age 10, striped shirt) was diagnosed with Acute Myeloid Leukemia the first of September.  Just two months later, Shawn, the daddy to these beautiful girls, was diagnosed with Myeloma, a cancer of the plasma cells.  Around Christmastime, Brielle will receive a bone marrow transplant with the donation coming from her 5 year old sister.  Shawn is in the beginnings of his chemotherapy treatment.



The Beus Family has been such a good example to us all through this trial.  Thankfully, they have good health insurance.  They want to be able to spend as much time together as a family.  They have made a list of things they would like to be able to do to make some wonderful lasting memories. 

We would like to ask you to donate to
"The Brielle and Shawn Beus Cancer Fund"
at any America First Credit Union

(You don't need an account number, just the title of the fund)


Kim (mom) said,
"We are going to fight with all we have in us
that they both beat this."

Rachel and Erin

Rachel (17 yrs) and Erin
were diagnosed with AML 12 days apart. 

Our two families have been close since the day we met. 
We've shared our daily ups and downs with each other.
We have cried and laughed together.
We have prayed for each other.

Although there is a big age gap,
you can tell that these two understand each other.






Rachel recently had a bone marrow transplant
and hopefully will be well enough to go home this week. 
Erin will be finished with her treatments in the next 2 weeks. 

Cancer will be far behind us,
but the relationships we've made will be forever with us.

Sunday, November 28, 2010

Together

Our family got together today for the first time in 11 days.  Erin has been asking and asking when she gets to see Cecily and Caleb.  Well, today she got to spend most of the day with them.  She was so excited when we came through the door.  She just ran to the door and hugged each person and she jumped up and down and squealed so much. 

The kids really had a blast playing together.


The kids got sillier and sillier as the day went on.
(John too.  That reminds me, ask him about what happened to his pants on his drive home - he he)

Caleb taped himself up with surgical tape.


Erin just being her cute little self.


It really is wonderful to be together.  The kids have adjusted well to our hospital schedules and we seem to be in a pretty good groove.  It has come with its bumps, but overall I've been very grateful that we've been able to survive the last 5 1/2 months of this chaos.

Erin is really happy and just seems to be flying through this last round.  So far, it has been her easiest round.  The Doctors seemed to think it would be one of the worst.  Really!  She hasn't had any fevers and her energy level is almost normal.  She is eating and pooping and peeing pretty normal (only a person who lives in a hospital talks about peeing and pooping - you can tell I've been here too long).  She hasn't thrown up since our drive here.  Last night we took her off the Zofran (anti-nausea medication) and she has eaten really well today.  She is still taking Meropenem and Clindamycin for her cellulitis.  We truly have been blessed.  We've had our dark days and everything just seems to be much easier now. 

I am so thankful.

Sometimes it is hard for me to be happy for how Erin is doing when I see so many kids and families who are suffering so much.  Too much.  Today one of our friends took their newborn baby off of life support.  She has been having seizures every 2 minutes since birth and the Doctors just couldn't do anything for them.  I have been thinking about this family all day and my heart has been so full of sorrow for this difficult time. 

Living in the hospital has really brought out so many new found emotions within me.  It has been such an eye opening experience.  Some days I don't want to meet anyone new or talk to anyone about why they are here and other days I want to talk to everyone and cry with them.  I wonder if I will miss the experiences I am having here when we are through?  I know that I will not miss having our family apart.

Erin's white blood count has been slowly (really slowly) creeping up (0.4 and 0.5).  That is the first sign that her ANC will start coming up.  I just can't wait to bring her home and get our house decorated for Christmas.  This is one Christmas that will forever be etched in our minds and hearts.

Thank you for your prayers!

Saturday, November 27, 2010

Hello Hair.

It's so short and blonde, but her hair is starting to grow back.
I tried to get a good picture of her hair growth, but it's so fair that it is hard to capture on my camera.


Thursday, November 25, 2010

Pictures!

All clean!
Erin is still taking 2 baths each day to soak her cellulitis sore. 
It is gradually getting smaller each day.


Playing princesses.


Playing with Mom on the bed.


Taking pictures of herself.
She really enjoys taking photos of herself.


Platelets.
We call them "orange juice".


Getting her vitals done.

Wednesday, November 24, 2010

No More Chemo

No More Chemo!

video


Sunday, November 21, 2010

What to do while we wait?

We are in waiting mode. Erin finished her last chemo on Saturday.  She and John both cried.

I have some wonderful pictures and videos to post, but we left our downloading cord at home in Logan.  So, you'll have to wait 2-3 days before you get any visuals.  We have the cutest video of Erin saying, "no more chemo!"  Anticipation is everything!

So, we just sit here at Primary Children's and wait.  Wait.  Wait.  And, hope and pray that Erin doesn't get sick or get an infection while we wait.  We are waiting for her counts to come up.  Her ANC is zero.  I keep asking the nurses if it has come up yet, but we all know that it will take a few weeks for that to happen.

We should start a poll in the comments below. 

What day do you think that we'll be bringing Erin home? 

The doctors told us that this stay is average 21-25 days so that puts her around Dec. 8-12.  Winner gets to send us to Hawaii?  Fair deal?

Erin got a blood transfusion yesterday and she is due for platelets any day now.  She is jolly and full of energy and we sang "jingle bells" two times today.  I decorated Erin's room with red and green paper chains that we made the other day while we watched "the polar express".  The chains go all the way around the room, well at least they will when I finish them.  I only have just over 1 wall left to do.  :)

Erin is excited to be home for Christmas.  She prayed for Cecily, Caleb, Grandma, Grandpa and Santa Claus.  Ha ha!  She is really into Santa this year.

We are filling the hospital walls up with Christmas coloring book pages.  So, whip out the crayons and markers and send us your best Christmas coloring.  You can mail your coloring pages to:

Erin Hughes, Room 4412
Primary Children's Medical Center
100 North Mario Capecchi Drive
Salt Lake City, Utah 84113

Happy Thanksgiving Week!
I am thankful that Erin is done with her Chemo.

Saturday, November 20, 2010

LAST CHEMO DAY!

Erin received her LAST 120 ml dose of
ARA-C Chemotherapy through her IV at 6:00am

She is getting a blood transfussion right now

and then

Erin will get a PEG Shot (Asparaginase)
in her leg around 1:00 pm

THEN . . . .

She will be DONE with Chemotherapy!
(we hope!)

DONE

DONE

DONE

DONE

BUH-BYE CANCER!

Erin will stay in ICS at Primary Children's until about Dec. 8th while we wait for her body to recover from the Chemotherapy.

Friday, November 19, 2010

Estimated Going Home Date

I had a good chat with Dr. Barnette and he informed me that Erin's last round will be 21 to 25 days starting yesterday.  So, our estimated GO HOME date would be roughly Dec 8 to Dec 12.  But, Erin's counts always seem to come up quickly, so hopefully we'll be done before then.  They will take her central line out of her chest roughly 2 to 4 weeks after we come home.  That said, if she is on any IV antibiotics for her cellulitis then the central line would stay in place longer.  I'm hoping to start 2011 without a central line sticking out of my daughter and with cancer far behind us!

Erin is tolerating her high doses of ARA-C (chemo) really well so far.  She has had diarrhea, but she's still eating and playing.  She has been tired a lot, but really pretty happy.  Her hair is starting to grow back from being off chemo for a month.  I hope it doesn't fall out from this last chemo round.  It's been really exciting to feel her peach like head.  She is excited too, and she says, "my hair is growing back."

Thursday, November 18, 2010

Counts

Wowee, I just found out Erin's ANC is zero (meaning that she has no immune system).  And to think that we were gallivanting around town yesterday.  I was under the impression that it wouldn't drop to zero until Monday.  So, I guess we are in the right place.  She'll probably need Platelets in the next day or two as well. 

Gettin' on with Round Numero Cinco!

We are back at Primary Children's to conquer OUR LAST ROUND of Chemotherapy!  I am just kicking my heels together in joy!  Erin will receive her LAST chemotherapy on Saturday!  The LAST LAST chemotherapy.  Never again to have chemotherapy!  (fingers crossed)

Our ride here consisted of pretty good traffic and two stops to clean up throw up.  Poor Erin.  She hasn't seemed sick.  Maybe it's just my driving (no one needs to comment on that).  She was upset about throwing up and I was so helpless while I tried to maneuver the car off the freeway while she was gagging in the back seat. 

We got situated in room 4412 in the Immunocompromised Unit (ICS).  It feels like home.  It was nice to be greeted by so many people we know so well now.

Nurse Megan went to draw some blood from her line to figure out Erin's ANC and other blood counts.  But, neither of Erin's tubes were drawing back blood.  She ended up doing a tPA (blood thinner) into both of her lines and then we let it sit for 45 minutes.  We got one line working, but the blood return was really slow and clotted.  She sent some blood to the lab for the blood work, but they couldn't use the blood because it was too clotted up.  We waited more for the tPA and just got both lines working nicely.  Phew! 

Before we can start chemo Erin has to have a pretty good pee output and blood return in her lines.  Due to Erin's throwing up and diarrhea from the previous chemo she was apparently dehydrated this morning.  So, her first diaper wasn't good enough and now we're filling her with fluids and waiting for a second really full diaper.

It's been a fun day though!  Erin was really excited to be back at the hospital.  Crazy huh?!  She seems to like the life of eating cookies and root beer in bed all day while watching episode after episode of Care Bears, Barney, or whatever else she's addicted to at the moment.  We usually aren't big TV watchers at home, but Erin has really become a TV addict here.

Monday, November 15, 2010

An Amazing Patient!

Seriously, Erin is amazing when it comes to taking her oral meds.
She has come a long way.  6 months ago we had to hold her down and force the meds in her mouth.

video


We were sooooo thankful the Infectious Disease Team took Erin off the IV Vancomycin.  She is only taking Meropenem through her IV so now we have a window of 7.5 hours when we don't have to hook her up in the night. 

We did Erin's last eye drops this morning.  She did eye drops every 3 hours for 48 hours after she is given ARA-C (Chemotherapy).  I'm looking forward to a long night's sleep!

Our meds for the 5 days that Erin is home.


When Dad Babysits

When Dad babysits Erin they have fun!
He got her all dolled up.

Saturday, November 13, 2010

PEG Shot and Going Home!

We are well into our chemotherapy round #5.  Erin and I had a great time playing in the halls and everyone just oohed and ahhed when they saw how cute our Little Air Bear is. 


We got a visit from Chase who has ALL Leukemia.  His Mom, Dani, has to travel from St. George 2 times a week to come to Primary Children's for treatments in the Oncology Clinic.  It was sweet to visit with them for a little bit.


This morning Erin got her PEG - Asparaginase Chemotherapy Shot.  I was so worried about this shot, but it ended up not being a big deal at all.  Here's Nurse Emily with her scary face because we think shots are scary and the nurses don't like to make kids cry.


Nurse Emily applied "Buzzy" (pictured below) to Erin's leg where the shot was to be administered.  He has a blue ice pack on him and he vibrates.  The vibrations confuse the nerves so the patient doesn't feel any pain.  Then, she moved Buzzy down her leg and they gave Erin the shot.  Erin didn't even flinch.  I don't think she even realized she was given a shot.  All she was concerned about was that Buzzy was cold on her leg.


Yay!  All done!


Erin and I just got home.  We will be here for 5 days and then we'll go back to Primary Children's on Thursday to finish this last round of chemo. 

Her counts are going to be dropping each day,
so please don't visit us if:
you are sick
have a runny nose
have diarrhea
have a cough
have the flu
are throwing up
if you think you are sick
if you've been around anyone sick
if you've been around anyone with chicken pox

THANKS!


Friday, November 12, 2010

Unfortunately . . .

Unfortunately . . .

That was the first word the Infectious Disease team said when the three of them came to visit me this afternoon.  Talk about setting me up for the worst.

They continued, "Unfortunately . . . the Pathology lab doesn't have results on the biopsy because the tissue was injured or crushed." 

Um, what?

Yes, the tissue is ruined and the Pathologists cannot do whatever a Pathologist does to look at a tissue sample.  They were supposed to let us know if any Leukemia cells are lurking around in the Cellulitis sore.

In tears I listened and tried really hard to comprehend what they were saying.  In a nutshell: we don't have any results.  Nope, no results.  But we do have two little holes on her poor sore little lady part and we're just praying that they don't get infected when her immune system hits zero next week.

I am really frustrated and scared and worried about what is going to happen.  I really had big hopes that we would have an answer to what is inside the Cellulitis and how we can combat it.  We are back to where we started. 

There is a little hope though.  The second biopsy (they took two) was sent to the Microbiology lab.  It has been sitting in a culture and it hasn't grown anything in the last 48 hours.  No results there either.  It is good that some awful bacteria or fungus isn't thriving there.  It is possible that in the next week or two something else may grow there.  So, they are not going to throw out the culture, but they are going to let it keep on trying to grow something.

The hard part for me is that I wanted an answer.  The Oncologists, Gynecologist, and the Infectious Disease Team are all baffled.

I'm sure you are wondering what we are going to do.  I cried.  It was all I could do at the moment.  Marie Steele (a fellow AML mother) comforted me.  By the way, she is wonderful.  It is such a blessing to have her here in ICS too even though it is through these dire circumstances.

Right now, we plan to just go ahead with chemo round number five.  Her immune system is going to get to zero and then we'll spend the next 3 or 4 weeks trying to keep the Cellultis from flairing up.  It is so sensitive and it seems to get better and then flair up randomly.  You are probably all sick of me talking about this Cellulitis sore.  It is under control right now, but if it gets out of control lots of bad things can happen like blood poisoning and dead tissue.  So, that is why it is a big deal.  If it is still there when we are done with this round of chemo, then they will do another bigger biopsy.  They want to send the results to a lab in Seattle that does this thing where they look at the DNA in the biopsy and then they know exactly how to fight the infection. 

Erin receives her last ARA-C Chemotherapy tonight at 2am.  She is doing alright tolerating these incredibly high doses of chemo.  She told me tonight that her stomach felt yucky.  She is on Zofran for nausea, and I'm glad she hasn't thrown up.  She is happy and chipper and she didn't have a clue that her mother was such a mess today.  She really is resilient and it's nice knowing that she won't remember much of this trial.  This morning we played in the halls and watched our friend Ethan ring the I-am-finished-with-chemotherapy-bell.  It was an emotional moment and I tried so hard to not cry when we all cheered and sang for him!  He has been here off and on for 13 months!

So, despite the "unfortunately" news, things are good.  I've cried enough tears today to last me a week, so hopefully I'm all dried up for awhile.  These last 5 months have been so long and we feel like the world has stopped for us.  Everyone is still moving on, but we are stuck back in June when Erin was first diagnosed.  Erin has spent 119 days at Primary Children's.  No one should have to do that.  But, we are near the end.  It is in sight.  I know that Heavenly Father loves us.  He loves Erin so much, and I'm thankful that He has shown me how much He loves Her.  This too shall pass.  In the long run, it will be but a small moment.

Thursday, November 11, 2010

Chemotherapy Round #5

***Our LAST ROUND has begun***

5 months 11 days ago our world changed.
Words cannot express the joy we feel knowing that this is Erin's last round of chemotherapy! 
The end is near. 


On Thursday my mom took Erin to Primary Children's Medical Center.  Dr. Michelle Bennett did a biospy on the Cellulitis sore in her diaper area.  She took two 3mm circles from the Cellulitis and sent one to Pathology and one to the Microbiology Lab.  So far, all of the results have come up negative for a bacterial infection, leukemia cells, or a fungal infection.  That said, the results really won't be in until Friday or Saturday since it usually takes 48 hours for the cultures to start growing.  We anxiously are awaiting the results.  Erin is doing really well!  She had morphine and oxycodone shortly after the biopsy because her pain seemed pretty bad.  Today though, she has only had oxycodone and she is so happy!  The Cellulitis is looking a lot better too.  Her CRP (inflammation in her blood) came back at 0.6.  Normal is 0.8 so we are extremely HAPPY!


Erin and I played "peek a boo" a thousand times while we waited to start chemo.

video

Our nurse Amy and another nurse Cathy brought in the ARA-C (chemo).  Erin was ready to show off as you can see by her silly position in this picture.  She is so excited to be almost done!


Nurse Amy posing with the ARA-C.


The ARA-C going in. 
She gets 120 ml in each dose and it runs for 3 hours.  It's a huge amount!  She will get 4 doses of ARA-C.  On Saturday at 8:00 am she will get a PEG shot (Asparaginase, chemotherapy) in her thigh.  We are not looking forward to the PEG shot.  Then they will send us home for 5 days.  Her counts will start dropping while we are home.  Next Thursday she will be admitted for the rest of her chemo and she'll stay for roughly 3 weeks.  Then, we will be done.



All hooked up.


Happy to be starting the last round!


Erin is in room 4409.  We are counting our blessings that we are here and going forward with this last round.  We are so thankful for everyone's support!  As I entered the hospital today it almost felt like home.  I passed so many parents, doctors, nurses, and techs that we now know so well.  Within a few hours of being here we had gotten a text from a friend doing her treatment in the Oncology Clinic and a visit from Marie Steele who also has a daughter with AML.  We are thankful for our support group here in the hospital. 

Well . . . here's to a great start! 

Tuesday, November 9, 2010

Change in Plans

Things are always so unpredictable for us right now. 

So, just a quick update.  As of today, we are planning on doing a biopsy on Erin's Cellultis on Wednesday morning, then they'll admit her and wait for some results from the biopsy and Thursday morning she'll start Chemotherapy if all looks good.  There were a lot of reasons for doing and not doing the biopsy, but I think we just need to go ahead with it now and find out exactly what is lurking inside that Cellulitis. 

Monday, November 8, 2010

Starting on Wednesday!

So that plan is to start Chemo Round #5 on Wednesday morning!  I am really excited about this.  Erin's ANC is 1900 today and her other blood work is just perfect!  We are pleased.  Her CRP (inflammation in the blood) is at 1.4.  It's lower than previously, but it's still above the average (0.8).  We have had Erin home for just over 3 weeks so it is important to get her back into the hospital for her last round.  We can't let too much time lapse between rounds. 

Her Cellulitis sore is looking alright.  It's still there and it's still hard to the touch, but it does look smaller.  I got the results from the Antibiotic Suseptibility Test that was done on the Pseudomonas bacteria.  The Meropenem and Clindamycin antibiotics that she is taking should be working on killing the bacteria.  They didn't test the Vancomycin on the bacteria.  This test was done on a culture from the bacteria outside of her Cellulitis.  We have not done a biopsy of the Cellulitis to find out exactly what bacteria is inside the Cellulitis.

Erin is happy and in really good spirits.  She is almost her normal self!  Tonight John was giving her the oral medications she takes and it just amazed me at how well she takes them.  1 ml Voriconazole, 3.75 ml Septra, and 5 ml Clindamycin is a lot of medication for a 2 1/2 year old to willingly take over and over.  I should get a video of her downing them.  She is a really good patient here at home.  It will be interesting to see how she does on this last round of chemo.  I just can't wait for all of this to be over!

Sunday, November 7, 2010

50 Cents

This experience of having a child with cancer has brought upon us beautiful blessings and a more sincere understanding of our Savior and His Atonement.  Along with that, it has also brought along pain and heart wrenching feelings. 

In the back of our minds we are constantly wondering if these beautiful moments with Erin will come to a short end.  The feeling of having her leave us comes and goes.  Some days I think, "I could do it.  I could survive this life knowing she is somewhere else doing far greater things."  And then other days, I think it would break my heart to not see her smiling face and hear her sweet melodious voice.

These are the feelings that we are constantly battling. 

It is something amazing to look at your child and see their inner beauty, their sweet spirit that you love so much.  To see them and to love them is a blessed gift from God.  It makes life so much more sweet knowing that we have been a part of Heavenly Father's plan in providing a body for our little girl.  He is so trusting of us to let us provide and teach His beautiful little girl.

These feelings and new understandings are a burden and a blessing to us.  The burden is the sorrowful feeling, but the blessing is seeing and understanding the greater picture of what life is all about. 

Brian, our 12 year old neighbor and friend, was listening to the quiet whispering of the spirit one day.  His brother gave him 50 cents.  He knew that he needed to give it to someone else.  There was one Sunday recently when our emotions and feelings were deep and tender.  Singing the hymns in church about our Savior and His sacrifice for us brought more and more feelings to the surface.  John and I were in tears.  Tears of grateful understanding of our Savior and tears of sorrow for the unknown.  At the end of our church meeting Brian gave us his 50 cents.  He said, "it isn't much, but it is something." 

It was way more than just something.  It was everything to us that day.  It wasn't the money that mattered, it was the number that mattered.

Erin is in remission of her cancer.  We are so thankful for that sweet blessing!  The next 5 years will be a big trial for us because with her type of Leukemia 50% of kids will relapse within 5 years.  The other 50% will stay cancer free for the rest of their lives. 

It is difficult to live with the feeling of wonder and the unknown.  But, we know that the Lord is mindful of us.  The 50 cents that Brian gave us was a little miracle for two tired worrisome parents.  We believe that Brian giving us the 50 cents was the Lords way of telling us that He knows what we are feeling.

We are grateful for the little miracles in our lives.  They make all things more bearable.  There must be opposition in all things.  We wouldn't know and be grateful for the miracles and blessings if we didn't have to feel the sorrow and grief for the trial.

Friday, November 5, 2010

Results From the Pediatric Gynecologist

Dr. Michelle Bennett (Pediatric Gynecologist) just called and informed us that the swab test that was done during Erin's visit came back positive for Pseudomonas Bacteria.  She has sent the culture to the lab to get an Antibiotic Susceptibility Test done on the culture.  We should get the results on Sunday or Monday.

The Antibiotic Susceptibility Test will help us to know if the medications she is taking are even working on her infection.  The Meropenem that she is currently on should be fighting the Pseudomonas Bacteria, but maybe it's just not working in Erin's case.

Everything sort of hinges on how her Cellulitis is looking on Monday.  We will do the CRP (inflammation in her blood test) and if those numbers are going down then we'll go ahead with Chemotherapy Round #5 on Wednesday. 

In the backs of our minds all of our Doctors are still thinking it could possibly a Chloroma which is a little pocket of Leukemia cells. 

IF things are not improving by Monday then we'll go ahead with a biopsy.  She is already scheduled for the biopsy, 7:30am on Wednesday.  Crazy!  It is good that it's already scheduled, but it sort of makes me feel like we've already failed.

The biopsy isn't too big of a surgery, they just take two 3mm circles (like a cookie cutter) from her Cellulitis.  They would send one circle to a Pathologist and one to the Microbiology Lab.  From those results we would DEFINITELY know if it is a true Antibiotic Resistent Cellultis and what type of bacteria is lingering in the Cellulitis or if it is indeed a small mass of Leukemia cells.

Lots of prayer and lots of waiting!

On the upside, Erin's 3 daily bum baths, the Clindamycin, and the Steroid Cream seem to be doing something because the Cellulitis looks smaller and less swollen.

Thank you so much for your prayers and help!  I hope these results makes sense.  So much of what I am learning is waaaayyyy over my head and I'm always asking the doctors to spell these confusing words and explain it in detail to me.  Then I get on the Internet and look for trusted information on the topics.  I just told John that in my next life I'm going to be a Doctor!  Although, it might just be easier to have been one for Halloween.

John and I are off to enjoy a DATE.  YES!  A DATE!  I better go get all dolled up.

Thursday, November 4, 2010

More Of The New Strategy

John and Erin got home safely after a long day in Salt Lake City.  The night before they left, John and I made a huge list of all of the things we wanted to discuss with the Doctors and Pharmacists.  I had spent much of the afternoon researching medical articles about AML patients with Cellulitis.

First they visited with Dr. Michelle Bennett, a Pediatric Gynecologist from the UofU Medical Center.  She prescribed Erin a steroid cream Clobetasol Lipoba to be used on her Cellulitis.  I believe the cream is to act as a barrier to protect the skin where the Cellulitis is.  Erin is also supposed to take a little bath and soak her bottom 3 times daily and keep her diaper area dry.  We tried putting her in panties yesterday evening so that she could sort of air out.  She ended up peeing on a chair and was so scared when all that pee came out of her.  We cheered and clapped for her so she wouldn't be scared if it happened again.  We also picked up a little potty from IKEA - $4!  We're not really potty training her yet though because we like her in diapers when we're living at the hospital - it makes a lot of things easier.

After Dr. Bennett's visit they saw Dr. Fluchell, one of our Oncologists at Primary Children's Medical Center.  The CRP (inflammation blood test) showed that the swelling in her Cellulitis is dropped to 1.6.  It was 2.6 just two days previous.  That is a good sign!  Her ANC (fighter white blood cells) flucuates so much and it is down to 1700.  It was 2400 just two days previous. 

We think that maybe her Immune System is out of whack because of what the Chemotherapy is doing to it.  Because, now that her ANC is up in a good range for fighting infection her body somehow isn't recognizing that it has an infection.  I wish there was some way to jump start her Immune System into overdrive on that Cellulitis.

John talked to Dr. Fluchell about one of the medical articles we had found the previous day.  In the article, the girl (who also had Cellulitis on her labia), had an Antibiotic Susceptibility Test done and it was determined that the bacteria in her Cellulitis was resisitent to more than 6 of the medications they were giving her.  We decided that we wanted to have an Antibiotic Susceptibility Test done too, but that requires a biopsy of the Celulitis.  We would really like to find out if these strong antibiotics we are giving her are even doing anything.  The biopsy is a big process though, and it can come with even more complications.  Come Monday, if her Cellulitis hasn't diminished, then we will most likely end up doing a biopsy and the Antibiotic Susceptibility Test.  We're running out of time on the Cellulitis.  The longer it just sits there the more complications that can happen.

In the meantime, Erin had blood drawn for a Virus Test (haven't gotten the results from that yet) in the event that the Cellulitis is stemming from a viral infection.  She was also put on Clindamycin (antibiotic) which she takes orally and it smells like gasoline.  We had the Pharmacist mix it with watermelon flavoring - but it still smells like gasoline.  Erin gives herself all of her oral medications and she is so brave when she takes that one.  She told us that it tastes yucky. 

John and Erin visited a Compound Pharmacist to have him mix the steroid cream.  They mixed the cream with Crisco!  He also visited the Primary Children's Pharmacist and got the Clindamycin there.  Then he went to our Home Health Company and picked up several boxes of IV medications (Vancomycin and Meropenem) that will last us a week.  They are taking over our fridge.  All of her supplies seriously need a room of their own.  I can't wait for this to be over so that I can get rid of every last syringe, tubing, saline, heparin, caps, alcohol wipes, etc.

Monday morning we will have our Home Health Nurse draw labs for a CRP to see if the inflammation has gone down in the Cellulitis.  If is has gone down and the Cellulitis is almost gone then we will admit her on Wednesday (November 10th)  for her last round of chemotherapy.  If things aren't improving, then we will have a biopsy of the Cellulitis done which will help us determine what type of bacteria is lingering and which drugs will be able to fight against it.

Getting Some IV Stuff

A little bit of medication.


Erin playing with one of the boxes


The set up for the IV meds.
2 pumps, Vancomycin, Meropenem,
4 saline flushes, 4 alcohol wipes and 2 caps.


Cleaning her line with an alcohol wipe.


Flushing her line with Saline.


2.5 hours later - All done.


Dancing around!

.

Ta Da!


Repeat every 5.5 hours.

This is how we feel after 3 weeks of this.


Wednesday, November 3, 2010

Thanks For Family

Today I found an interesting picture in Cecily's backpack.



Left to Right
Erin, Cecily, Dad, Mom, Caleb

Cecily's depiction of Erin in a pink hat says it all!


Tuesday, November 2, 2010

New Strategy

Okay.  I had a good long chat with Dr. Fluchell today.  He told me about his meeting with the Infectious Disease doctors and other Oncologists.  Frankly, I think they're all a bit puzzled.  We're going to keep Little Air Bear on the Vancomycin and the Meropenem, but she's going to start taking Clindamycin orally.  They debated about giving it to her through the IV, but they don't want to kill us off by having to do all these IV medications.  Seriously, we haven't slept in WEEKS (well, really months)!  So, the Clindamycin is pretty awful tasting, but we're going to get the Pharmacy at Primary Children's to mix it up with some yummy tasting syrup, probably Root Beer flavoring since that's Erin's favorite.

Now, the latest news is that she has an appointment tomorrow with a Pediatric Gynecologist through the Uof U.  It is very hard to find a Gynecologist who specializes in Pediatrics, but we've got one and they fit her in during their lunch hour.  So, to tell you more about her Cellulitis since I'm sure you're wondering now more about the details on it.  It's a tough subject for us since it's in such a private part of her body.  The Cellulitis is located on her right Labia and is about the size of a pea pod.  It's got to be really uncomfortable, but Erin seems to barely notice it now.  We wish it was GONE!  GONE GONE GONE!  So, hopefully the Gyno will have some magic powers!

They team of doctors also metioned that it could (BUT VERY UNLIKELY) be a Chloroma.  A Chloroma is a collection of Leukemia cells outside of the bone marrow.  It's very unlikely that she has a Chloroma because she developed the sore shortly after being given some super duper strong chemotherapy drugs.  As you can see, we're looking at all avenues.

As long as I'm talking about things that we are trying to figure out. . . today I noticed that Erin's line is making a wheezing sound when I push anything through it.  The noise is coming from the area where her line was repaired.  Niiiiiice.  Probably going to have to fix it tomorrow when she's up there.  Just one more thing to add to the list.

John is going to make the trek to Primary Children's tomorrow morning.  Wish him luck!  I hope that he comes home with a happy girl who has some answers on her Cellulitis sore.

Shannon Tavarez

We were saddened today to find out that Shannon Tavarez, who played Nala in the Broadway Production of The Lion King, died yesterday from Acute Myeloid Leukemia. 

You can read more about the details HERE.


Monday, November 1, 2010

Bone Marrow Results

We got Erin's Bone Marrow Aspirate results today.  She has no sign of Leukemia cells in her bone marrow.  This means that she is still in remission.

Staying Put

We are staying put . . . no chemotherapy tomorrow!

Erin's Cellulitis sore in her diaper area is looking worse and her CRP (blood test that shows inflammation) has gone from 1.4 last week to 2.6 today.  A normal CRP is 0.8.  We are very thankful that we didn't start chemo last week because her sore would have been awful and she wouldn't have any immune system to fight it.  So . . . here we sit.

Dr. Fluchell called this evening and told us the news.  He said that our team of Oncologists and Infectious Disease doctors are going to have a "pow wow" (his words) tomorrow morning on Erin and decide on a new path.  She has been on two "bazooka medications" (his words again) Vancomycin and Meropenem for over a month and so they are going to see if there is something even stronger that will work for her. 

We were pretty astonished today to find that her ANC has shot up to 2400!!!  It was 1000 last Thursday so that was some bright happy news.  Her other blood work is all up there in a pretty normal range. 

I took Cecily and Caleb to their pediatrician, Dr. Bell, today for their 4 and 5 year well checks.  It was fun to see Dr. Bell and let him see our little Erin.  Dr. Bell was the doctor who first diagnosed Erin with Leukemia.  He was the one who gave us the unfortunate phone call that changed our entire world.  We are so thankful for Dr. Bell and his staff at Treehouse Pediatrics and all that they have done to help us.

I have spoken personally with three doctors today and it is such a wonderful feeling knowing that we have such amazing professionals taking care of us.  I am grateful for those (and their families) who sacrifice their time to help save lives.  We are thankful to have a happy and relatively healthy little angel brightening up our home.  Erin is such a delight.  We like to think of her as a little adult in a tiny body - she is so grown up sounding.  It probably comes from living in a hospital being surrounded by so many adults. 

She has also started demanding that SHE answer the telephone.  So, if you happen to call our house and she answers the phone I hope you enjoy your little conversation with her!

Erin has a clinic appointment Wednesday afternoon to have her doctors look at her and fill us in on their plan of action.  John is taking her to that appointment.  So . . . we'll see what happens.  In the meantime, we are going to enjoy our time here at home!