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.

Sunday, October 31, 2010

HALLOWEEN!

Our sweet Young Men and Young Women gave us a wonderful Halloween gift!  They hold a Halloween Carnival each year for the Primary children.  They offered to come a half hour early and have everything set up and all of the youth ready to give our family our own personal little carnival.  It was such a relief for us to let Erin enjoy some Halloween festivities and not be around too many other people (since her ANC is only 1000).  The youth were all dressed up and ready to help us enjoy all of their activities.  It was so much fun.  Erin enjoyed playing a bean bag toss, candy walk, face painting, donut on a string, a fish pond, and "wack a Deacon" (similar to "wack a mole").  We want to say a really really big THANK YOU to the wonderful youth and youth leaders in our ward who gave of their time for Erin.

THANK YOU!

The Ward Halloween Carnival!


Erin doing the bean bag toss!


Playing "Wack a Deacon!"

video

John and I dressed up.
When Erin saw John she said, "Dad is a cow!"  HA HA!
She didn't comment on my costume - I guess I always dress this good!


The whole gang getting ready to
Trick or Treat!


Princess Air Bear!


The kiddos. . .
Caleb the Bat, Cecily the Witch, and Erin the Princess.


Erin LOVED Trick or Treating!
She and the kids and two of their friends ran from door to door yelling "Trick or Treat!"  She walked the entire time and didn't want to ride in the stroller.  It was raining for most of our trick or treating and the kids didn't even seem to notice. 

Erin totally understood everything about trick or treating.  She had it down before we even got to the first door.  It must have been all the practicing the kids had done around the house the previous day.  They trick or treated around the rooms of our house and then dropped all of their loot in the middle of the living room floor - it took us forever to clean up the mess of toys, books, my cell phone, car keys, music books, etc that they had "trick or treated" for!

It was really a blessing to enjoy the Halloween holiday as a family!

Happy Halloween!

Thoughts on my mind

Today I found out that Erin's ANC is 1000.  It was 1400 last Monday, 1200 last Wednesday and 1000 today.  It concerns me that it is going down rather than an up.  Her white blood count (which was moving up) has dropped from 4.2 to 3.2.  She really needs a strong immune system to fight this Cellulitis sore in her diaper area. 

Which brings me to my next thought.  The Cellulitis sore is just not healing.  It was really inflamed this morning.  I think all the trick or treating walking might have aggravated it.  In any case, I asked our doctor to do a CRP (inflammation) test in her blood work on Monday so that we can keep tracking those numbers.  I also asked them to do a Vanc Trough, which is where they check her blood right before her next Vancomycin dose to see if there is enough antibiotic in her blood.  I just wonder if maybe the dosage isn't right because she has been on these strong antibiotics for over a month now and she still isn't improving.

She is scheduled to start chemotherapy round #5 on Tuesday, November 2nd and I just wonder if she will really be starting or if we'll be doing more waiting to get this sore more healed.

On the bright side - Erin had a really funny experience today.  I guess maybe at first it wasn't funny, but we are laughing about it now.  When I got home from church John informed me that he needed to take Erin to InstaCare right then.  I asked him why.  He replied that she has stuck a popcorn kernel up her nose and he couldn't get it out.  So, off to InstaCare they went.  Apparently the doctors there have a little tool that is like a spoon with a light on the end that they can just stick up a kids' nose and scoop out the popcorn kernel or bean or whatever else a child puts up their nose.  The kernel is out, but now I'm wondering why us parents aren't just given the nose scooping tool along with all of the other little gifts we are given at the hospital when a child is born.

The joys of parenting!  If it's not one thing, then it's another. 

Friday, October 29, 2010

It's Almost Halloween!

We visited the annual "Pumpkin Walk" put on by the city of North Logan.  I have been going to the pumpkin walk since I was a little kid and I'm so glad that I can bring my own kids to enjoy it.


Erin's latest bath!  It is so much work to give her a normal bath, that we've resorted to just putting her in the bathroom sink.  She LOVES it!


Enjoying a craft in the Oncology Clinic.


Wearing her new Halloween hat she got from the Oncology Clinic and doing some drawing with Cecily.  I have to tell you about that cute little pumpkin on the table.  When we got to RTU (Rapid Transit Unit) to do her Bone Marrow Aspirate the nurse asked Erin if she could get her anything.  All Erin wanted was a pumpkin.  So, our sweet nurse somehow produced this little pumpkin for Erin.  We love Primary Children's!



Things are going pretty well.  Erin's Cellulitis is still there, but it's just a tiny bit smaller than it was yesterday.  She is so healthy and strong at home and she is so much more happier here!  The dynamics in our family are also so different when she is here.  It must sound weird for me to say that, it's just that she has spent almost 1/2 of a year away from home and so it's always just different when she is here.  We love having her here, but it is always an adjustment for all of us.  She bosses Cecily and Caleb around and they are so patient with her when she does that.

Yesterday we had our Home Health Nurse here and we did a tPA on one of her tubes.  It has just been so sluggish, so the tPA is a blood thinner that sits in her line and busts up any clots that might be there.  After we did the tPA we changed the dressing on her line.  The nurse checked her lines one more time and found that they didn't work at all.  It was really kind of scary, but in the end we determined that her line is just really positional.  That means, that depending on how we have her line in the dressing depends on how well her tubes work.  They just have to be positioned just right or they run slowly.

We are really looking forward to Halloween tomorrow.  Cecily got dressed up in her witch costume for school and all morning Erin danced around saying that she was "Angelina Ballerina."  I'm not sure what she'll end up dressing up as tomorrow, but I'm sure when the time comes she'll let us know what she wants.  She is such an amazingly strong person.  We love our little air bear!

Wednesday, October 27, 2010

We are back home

We are back home and didn't get admitted today.  She was sedated this morning for her bone marrow aspirate.  Going without food just about killed us both.  She was so crabby!  The nurses in the wake-up room shooed us out of there with her in my arms still flailing.  Maybe it had been a long day for them.  She threw her spill-proof sippy cup full of root beer two times and somehow it somehow managed to spray all over the floor - so much for "spill-proof".  She kept pulling off her little pulse meter thingy and she kicked so much that they never got a reading from her blood pressure cuff.  I assured them that she hasn't had high blood pressure. 

The wake-up nurses sent us back up to the empty Oncology Clinic where we met with Dr. Fluchell and debated for about an hour about either admitting her for the 5th (and final) round of chemo.  He consulted Dayna (our Physician's Assistant) and Dr. Barnett.  We all decided that it was most important to get her Cellulitis more healed before we start the final round of chemo. 

Her Cellulitis is looking even better today.  Her CRP (blood test that shows inflammation) was down to 1.4.  A normal CRP is 0.8 or lower.  Previously her CRP was as high as 21.0, so we know that her Cellulitis is slowly healing.  It worried us all that it flared up over the weekend, but we hope that it continues to get smaller and smaller each day. 

So, she is set up to be admitted for her chemotherapy round #5 on Tuesday, November 2nd.  I had such mixed feelings as we were discussing the options with her doctors.  I was all packed and ready to stay the night with Erin if they admitted us, but as I was driving off down the freeway I just knew that we would be coming home today.  I am glad to be home and to spend the Halloween weekend here with my family.

Tuesday, October 26, 2010

MRI Results

Dr. Fluchell (another one of our favorite Oncologists) called today and gave me the MRI results.  He said that the Cellulitis was still infectious and inflammatory looking, but that it had improved since her last MRI.  We were thankful to find out that it was not abscessed!  I think that it looks even better today than it did yesterday, but - it is still there!

I am taking Erin to Primary Children's tomorrow morning for her Bone Marrow Aspirate.  They want to look at the Cellulitis again and most likely they will just send us back home and won't admit her for the last round of chemotherapy until Monday.  They are so concerned about the damage that the Cellulitis could do to her skin tissues when they drop her ANC (fighter white blood cells) to zero for a few weeks.  So, to be safe we will most likely put off the chemotherapy unless we have a miracle and find that the Cellulitis has completely disappeared by tomorrow morning.

Monday, October 25, 2010

BIG day is over!

Phew.  12.5 hours later and Erin and I are home.

It's so nice to be back home.  We left Logan at 6:30am and arrive at Primary Children's at 8:3am.  We met with Dr. Khatua and he arranged for us to go downstairs to Radiology for an ultra-sound of Erin's cellulitis.  By the way, it looks way better than it did yesterday.  We sat around in Radiology for awhile when the receptionist called me up and told me that the Oncology Clinic wanted us back upstairs and they were cancelling the ultra-sound.  I'm sure I looked very confused because she said, "you'll get to talk to a doctor about this."

Back up to the fourth floor we went, past the Nemo fish Elevator display that were sleeping (in other words, no one had turned them on yet).  Dr. Khatua (our Oncologist) explained that the Infectious Disease Team (Dr. Barnette & Dr. Verma) had decided that they wanted an MRI of the cellulitis so that they could have a better look at it. 

The only spots open for an MRI were 4:00pm at Primary Children's or 1:30pm at the Outpatient Primary Children's in Riverton.  I set up the 1:30pm appointment and then Erin and I went to the store to buy diapers for our long day.  Why I didn't pack diaper, I do not know.  All this time though Erin was NPO which means she hadn't eaten anything since Sunday dinner.

Erin and I went to the Hogle Zoo to pass the time.  What a nice day for the zoo.  A nice 40 degree temperature and not a single other patron at the zoo.  We had it all to ourselves.  We rode the carousel and sat in the Peacock seat.  It's kind of weird sitting on a carousel all by yourselves going round and round as you pass the carousel employee over and over.  We really enjoyed ourselves despite the cold.  Because the zoo was empty we spent a lot of time pouring over each exhibit.

We left around noon and Erin slept the entire way to the Riverton Primary Children's Outpatient Building.  We were a bit early so we just sat in the parking lot while Erin slept.   (This is really sounding like a big-o travel log isn't it? - oh well . . . on I go . . .)

The Riverton Building is only about 1 year old and it was empty.  We got right in and set up for the MRI.  Erin was given Precedex (sedative) and 10 minutes later she was still pretty awake.  They had her little body in the MRI and then they gave her Ketamine (another sedative) and that just stunned her enough to get her to go to sleep.  I hung out for about an hour and then they brought her to me in the Recovery Room.  They told me that she had woken up in the middle of the MRI.  They said she sat up and called "mama mama!"  They gave her more Ketamine and more Precedex. 

By the time they got her to me she was still completely out.  In fact, she didn't really officially wake up until we were about to Logan.  The nurses said that the kids on Precedex are usually pretty out when they go home.  They were right.

She is finally eating her first meal in the last 24 hours of pizza, chocolate chip cookies, and a banana. 

Well, we will find out the results on the MRI tomorrow.  She is now tentatively scheduled for a Bone Marrow Aspirate on Wednesday morning and then they plan to admit her for her last round of chemotherapy - all depending on how the MRI looks. 

As Dory (from Finding Nemo) would sing . . . Just keep waiting . . . just keep waiting . . . just keep waiting.

Sunday, October 24, 2010

My Little Air Bear!

Wow, what a big day.  A big day for tears.  Seriously, I must have been holding them in for a few weeks and then of course, while I'm singing "I Believe In Christ" for the opening hymn in Sacrament Meeting I would start out into that kind of uncontrollable kind of sobbing.  In public.  How many times has that happened in my life?  Once.  Today. 

I was so very thankful to be sitting near Julie Duersch who supplies the ward with tissues whenever someone starts to cry.  Dear Julie: Thank you!  Maybe this should be your next calling - Ward Tissue Supplier.

So, there were lots of reasons for the tears since they've been building up and have been ready to burst for days now.  I just feel so sad sometimes about my little air bear and all that she has to go through.  I also feel sad for myself because it's sometimes difficult for me.  I am tired of taking care of IV tubes, a cellulitis sore that won't heal, giving her a bath so that the cellulitis can sort of heal but at the same time not wanting to give her a bath because it's such a process.  I don't enjoy having to put the aquaguard (water repellent plastic covering) on over her dressing so her line doesn't get wet and then pulling it off after her bath.  She has sensitive skin like me and her skin is so raw where we've had to pull off the tape over and over again.  These were just some of the things that make me cry. 

Then, there were the beautiful hymns we sang and the songs that the primary kids sang in the primary program today.  Everything centered on our Savior Jesus Christ.  As we have been going through this trial I have found that scriptures that refer to His Atonement jump out at me.  I weep at the thought of the pain and agony He felt.  It hurts me inside to think about it.  It is also so comforting at the same time.  It's comforting to know that He has felt the pains that Erin is going through.  I wouldn't wish these pains on anyone.  Yet, He willingly felt them for us!  He has felt the pain of cancer and He has felt the pain a mother feels as she watches her little child fight cancer.  The Atonement is beautiful!  It is an amazing wonderful gift.

Our children have enjoyed saying their primary program parts for us for family home evenings for the past few Monday nights.  We had them stand on a chair and use our vacuum handle as a microphone.  The kids took turns saying their parts over and over as they all practiced not eating the microphone - you know, like spitting into it to say their parts.  Cecily's was, "The Holy Ghost makes me feel warm inside when I read the scriptures with my family."  Caleb's was, "I will be safe if I follow the Prophet."  And, we gave a part to Erin to practice since she was a part of our family home evening this week, she said, "I am a child of God."

Erin and I are off to Primary Children's tomorrow morning.  We have to be to the Oncology Clinic by 8:30am.  I spoke with our Primary Oncologist, Dr. Katoua, today and it was so comforting that he was the doctor on-call.  The first thing he said to me was, "how is our little baby Erin doing?"  We have the best care there at Primary Children's.  We will meet with Dr. Verma (another of our favorite Oncologists) tomorrow morning to look at her cellulitis.  There will also be a Surgeon available to check it out in the case that it will need to be poked and drained.  Ugh.  I just kept wishing that it would just heal on its own.  I sort of expected a big miracle.  Miracles happen, I do believe this.  But, for some reason we have to go through this whole process.  I am learning more about myself as we go along for the ride.

The healing of Erin's cellulitis will push our last round of chemotherapy back so I'm not sure when we'll actually start that.  I know that they don't like to put it off for more than a month between chemo rounds.  I am thankful that her blood work is showing no signs of leukemia cells growing.  I am thankful that my beautiful little girl is with us.  She really is beautiful, inside and out.  She has the most amazing spirit.  I love you little air bear!

Saturday, October 23, 2010

Dreaded Cellulitis!

So after giving dear little air bear a bath this morning I found that the cellulitis in her diaper area had doubled in size and was bright red and shinny.  Not a good sign.  We called our neighbor and he helped John give Erin a Priesthood Blessing.  Someday I hope she sits still during a blessing, but she always kicks and screams during it.  We got her dressed up and then we went off to take our scheduled family pictures.  On the way out the door we gave her a dose of Oxycodone just in case the cellulitis was hurting her so that she'd be happy in the family pictures (last year I burned her hand on a skillet the morning of our pictures and she was in tears in all the pictures - I didn't want to repeat that!).  Her pictures turned out pretty good, it was almost impossible to get her to really smile.





After the pictures were done, John took Erin to entertain her because she was so fussy and I worked with the photographer on which pictures I wanted to keep.  After some time we finished and Cecily, Caleb and I looked all around for John and Erin.  Caleb found them in the boys bathroom.  I came to find out that Erin had thrown up (six times) all over John in his suit, the JCPenny Portrait Teddy Bear, the bathroom floor, and some of the JCPenny Department store (Sorry JCPenny's)!  The portrait studio didn't make us pay for the ruined teddy bear (we threw it away of course).

Erin had a full breakfast and plenty of snacks before the pictures and then we added some Oxycodone that made her nauseous!  Poor thing!  And to think that she sat there during the pictures on the verge of hurling!

Then we had a big day of celebrating Caleb's 4th birthday.  All the time in my mind I'm thinking that I need to check her diaper area to see how that Cellulitis is looking.  But, I didn't.  I just don't want to drive back to Primary Children's and get her admitted.  We are scheduled for an ultra sound on her celllulitis on Wednesday morning and then they were going to admit her for her last round of chemotherapy.  It really looks like that is not going to be the plan.

I finally just called the On-Call Oncologist.  I held off doing it because Erin doesn't have a fever and she doesn't show any signs of pain and basically I just didn't really know what to do about it.  I talked to a Resident (the On-Call Oncologist) and she told me that we need to visit the ER (at Primary Children's) tomorrow and get it checked out.  She also told me that our Oncologist, Dr. Katoua, would be in tomorrow morning so I plan to call him then.  We will most likely be taking her to the Primary Children's ER tomorrow, that is, if it still looks awful.  They will probably have to admit her and have the cellulitis cut open and drained because it is probably abscessed.

There were a lot of PROBABLY's in that last paragraph.  I really am bummed about all of this.  Seriously, it is crazy that with the intensely high doses of chemo and all the serious side effects that can happen . . . we end up with a cellulitis!  It could be so much much much more serious.  I should be more thankful. 

I guess I'm just tired of this.  I'm tired of carting Erin off to Primary Children's and I'm tired of having our family apart so much.  I don't like the stares that strangers give us when we they see our bald child.  I don't like that there are tubes sticking out of my daughter.  I don't like that our lives are so unstable right now.  I'm tired of being tired.  I'd like to not be interrupted by Erin's IV pumps and just sleep through the night.  I just wish that we could live a normal life. 

Tomorrow will come, and I'll have more details on what we're going to do.  The next day will come and then the next day will come and then eventually we'll be done. 

We are in the "endurance" stage. 
We just plain endure. 
That's what life is about right, endurance? 

"Endurance
is not
just the ability
to bear a hard thing,
but turn it into
glory."
- William Barclay

So now the question is . . .
how do I turn this dreaded cellulitis into glory? 

"I learned from the example of my father
that the manner
in which one endures what must be endured
is more important than the thing that must be endured."
- Dean Acheson

Ahhh, so my attitude makes a whole lot of difference. 
I need a better attitude.
Does anyone have some to spare?


P.S. here's our family picture.


Friday, October 22, 2010

Pictures!!

Enjoying the outdoors!


When she wakes up in the morning she comes out of her room carrying her pumps (we hook her up at 5:30 am and they run for two hours.  They're heavy for her, but it's so cute seeing her lug them around.


She helped me set the table and she obediently wore her backpack with the pumps in it.


Being silly with her sibs.


Haley (our babysitter) helped the kids make Halloween masks.


Mom says, "Smile Erin!" 
This is the result.
 . . and she decided she didn't need a shirt anymore.

Thursday, October 21, 2010

Feels like a Friday!

It feels like a Friday today!  Usually I'd be down at Primary Children's on Thursdays, but since I'm not, I have had a great day just being home with the kids with nothing to do.  It feels nice.  Usually I cram everything (shopping, laundry, cleaning, practicing, etc.) into 3 days, but not this week.  So, it feels like a Friday.  And tomorrow will be the real Friday, and then there will be Saturday and Sunday.  I'm in Heaven!

Erin's ANC is 1300!  Woot woot!  She is scheduled for an ultra sound on Wednesday, Oct. 27th, and then they will most likely admit her for her last round of chemotherapy.

Her Home Health Nurse Janine came today and we changed Erin's dressing on her line.  You'd think that after 5 months of this she wouldn't cry bloody murder, but she still does.  Poor thing!  At least we only have about 4 or 5 more of these and THEN WE'LL BE THROUGH!  When we finished the dressing change, she just curled up and bawled - it was one of those deep down cries where she sounds like she just feels bad.  I don't think the dressing changes hurt her physically, but I think they must hurt her feelings.  She probably feels so violated and I hate having her feel like that.

On the other side of things, she has such a strong spirit.  I have noticed so many things about her that make me think that there are angels about her helping her through this.  How else could a little 2 year old be coping so well with this trial?  She understands so much.  She is so brave and strong.  I told her that next week we were going back to the hospital and I asked her if she was alright with that.  She replied, "yes."  She knows what the hospital is, and she knows what goes on there and she was still sweet as ever to say, "yes".

She just came up to me and said, "excuse me Mom, I want black."  She is referring to a black Popsicle.  I haven't seen black Popsicles, but she wants one.  Our neighbor and the kids' babysitter Haley just showed up to color Halloween masks with the kids.  Erin ran across the room and gave Haley a big hug.  Life is good!

Wednesday, October 20, 2010

Our Light the Night Experience

The Leukemia & Lymphoma Society's
Light The Night Walk

Thank you so much to everyone who donated to the LLS in honor of our Little Air Bear!  We were so excited that our little team made $725.  The LLS donations go towards research for blood cancers.  In other words - your generous donations go towards research that will help find a cure for our Erin's AML.

The Walk was a beautiful experience.
I tried to sum it up through a video since I feel that I can help you almost be there this way.  I just don't think I can put the emotions I felt, into words.

Where words fail, music (and video) speak.


video


We want to thank President and Sister Bowen (my Englad Leeds Mission President and his wife) who came to support us.  Thank you Cris LaPierre and Heather Stock for joining our team at the last minute.  Thank you Steve & Erin Hatch for taking care of our Little Erin while we participated in the Walk.  And, thank you again for your generous donations. 

Until next years' Light the Night Walk . . . .


Tuesday, October 19, 2010

How's it going?

We are so happy!  Erin's ANC is still 600, but it should start coming up.  She has a blood test on Thursday.  It looks like she'll be admitted to Primary Children's on Oct. 28th if everything continues to look good.  Her last and final chemotherapy (Round #5) will last 21-28 days.  She goes to Primary Children's on Days 1-2, Days 3-7 she GETS TO COME HOME and then she goes back on Day 8 to stay for the rest of the chemo round.  They only give her chemotherapy drugs on days 1,2,8,9.  Her ANC will still be relatively high, this is why she will get to be home for days 3-7 during the chemo.

Erin is really doing so well at home.  She is her old sweet self - the way she was back in May before she was diagnosed.  Oh, she is just so sweet.  She is constantly running to me with her arms open wide to share a hug with me.  She gives THE BEST hugs.  She holds on so tight.  She tells me often, "Mom, I love you!"  I just think that this little girls has angels about her all the time.  She understands so much - much more than I can imagine.  I think she has been blessed to understand this trial that she is going through.  Thank you for your prayers on her behalf, I'm sure that Heavenly Father is listening and He is blessing her in countless ways.

Sunday, October 17, 2010

Bear Lake

A few pictures of Erin having fun with the family.

You can almost see her little backpack that we bought that conveniently holds her pumps so that she can still play and we don't have to monitor her tubes and pumps.  It was quite a job to get her to wear it the first time.  As you can see, we have the shoulder straps tied together so she can't take it off. 



Erin and her cousin Seth.


 Cecily, Caleb, and Erin.


It was so much fun having Erin and John arrive at Bear Lake with the rest of us.  She woke up this morning back to her old self.  She gets so changed living in the hospital.  I think she spent 2 days crying and fussing and just being completely unhappy.  It is such a tough transition for her and I'm sure it's difficult for her to fully understand how to act in the hospital and at home.  We are glad to be together and we're enjoying relaxing and spending time together.  I just snuggled Erin to sleep for her nap and it just felt so good to snuggle her away from the hospital and its noisy IV pump alarms and constant nurses and doctors. 

Her sores on her head and diaper area are both showing excellent signs of healing.  We haven't given Erin any pain killers in the last 24 hours and she seems to be coping fine.  We have adjusted her meds to have the Vancomycin and the Meropenem run at the same time through her two tubes so that simplifies having her hooked up so much.

Friday, October 15, 2010

Coming Home

John and Erin are on their way home right now!  They have to first stop at our Home Health Company and pick up all of our supplies and then they'll be on their way to Logan where they'll meet up with our Home Health Nurse.  Then will get packed up and come up to Bear Lake to be with the rest of us!  I can hardly wait!

Erin's ANC is up to 600 today and her sore is just looking better each day.  She is still on Oxycodone and Tylenol for the pain.  They are also keeping her on the Vancomycin and Meropenem antibiotics for the next 2 weeks while she is home.

I was so excited to get an opportunity to donate blood on Wednesday night at the Stake Blood Drive done by the Red Cross.  I don't have the same blood type that Erin has, but it was fun thinking about how I was helping someone else in need.  The best part was that I donated in my fastest time ever - 7 minutes!  Cecily & Caleb came along with me and they were so well behaved and sat in their chairs coloring for almost an hour while they waited for me.

I just think it is so wonderful that Cecily & Caleb have had each other while we've gone through this.  It was quite a shock to us to have them 14 months apart, but it has really has become a blessing.  They are built in friends and they get along so well. 

Well, I can't wait to see my Little Air Bear and watch her run out in the sunshine!  It is so hard to contain my excitement!  I am also one of the most impatient people ever, but I am so glad to know that today is finally the day!  And, the best part is that we only have to take her back for ONE MORE ROUND of chemotherapy after this!  YES!

Thursday, October 14, 2010

More Good News

Erin's ANC is 500!
Woweeeee

She is scheduled to come home tomorrow and she'll come play with us at Bear Lake.  Now that her ANC is so high she is able to go out of her room and play in the halls of ICS
and play in the toy nook. 
Btw, a normal ANC is 1500 and higher.

She'll be home for about 2 weeks and the doctors are planning on continuing all of her medications.  That means that we'll be busy busy busy with meds day and night, but we are so thankful to have her coming home.

We can't wait to let you play outside Little Air Bear!
What a blessing it is so sunny this weekend.

Wednesday, October 13, 2010

Good Results

Today Erin's ANC is 300! 

I'm going to include some of her blood work here for those of you who know what I'm talking about and have been following it.  Her WBC is 0.9.  Her Neutrifils are up to 24.  Her CRP (the swelling/inflammation test) is down to 11 today.  It got up to 21 so we're so happy to see that there is a downward trend on the swelling on her sore.

Her cellulitis sore is healing pretty good (better than expected).  Yesterday she had morphine and oxycodone to handle her pain, but today she's only been on Tylenol.  We are trying to get her off the harder painkillers so that she can come home.  She is still on a whole bunch of antibiotics and she'll probably come home with them and we'll have to give them to her here.

As for coming home, well we are just waiting for the sore really.  The ANC is coming up nicely and that might be due to the Neuprogen which stimulates cell growth which makes her white blood cell count come up quicker.  Anyways, they might not send her home until her ANC is 800 or 1000, but we're not totally certain about that.  If her pain is under control and her sore is almost healed and her ANC is getting higher then she'll come home.

Thank you everyone for fasting and praying for Erin.  There have been so many blessings that have come from your faith.  Thank you so much! 

P.S. While our roof is under construction we are without Internet since our Internet comes through a tower that usually sits on our roof.  The roofing guys had to disconnect the tower and the Internet peeps can't come until Monday to fix it.  So, sorry that there won't be updates on Erin's progress for awhile. Thank you for checking in on us, we appreciate it so much.

Sunday, October 10, 2010

More Blessings

Erin's ANC is 100!

Thank you everyone for your continued prayers and fasting.
We also appreciate all of you who put our names in Temples and Church Worship Services around the world.
THANK YOU!

Last night our family participated in the
Leukemia & Lymphoma Society's
Light the Night Walk.
I will write later about this experience.

I do have a few pictures of our little Erin and her Aunt Erin who babysat while we were gone.
I think they had too much fun without us.









Thank you Auntie Erin for spending time with our sweetie!

Saturday, October 9, 2010

Saturday Pictures

Erin and I making play dough snowmen.


Sleeping Beauty


One of our Leukemia friends, Amelia, came to visit.
She brought Erin a beautiful card that Erin snuggled last night.


Cris snuck a picture of me entertaining Erin with her butterfly wings.  I only included it so you could see to what extent we go to keep her happy.  Do you think they make me look younger?  Maybe I'll wear them for Halloween since they fit so well, but next time I'll wear them right-side-up.


Last night as I was putting Erin to bed she read this book to me.  My favorite part was when she said "duck" when she touched each kids' head in the picture.  With all of the other stories we read last night she had to turn each and every page of the book.  Every bit of independence is important to her when so much of her independence is taken away while she is in treatments.  She really was happy (despite how her face looks).  I think she's saying, "let me see" because she would rather see the pictures than have her picture taken.


Her ANC is still zero. 
Her WBC (White blood count) is up to 1.0!
(yesterday it was 0.6)
She made 1 band and 2 monocytes...
...that means that soon her ANC will come up.

Erin's sores are looking even better today.  The one in her diaper area is still pretty serious, but it is getting smaller.  Her pain seems to be the worst during the night so Dr. Afifi and Dr. Abraham and I decided to start her on Morphine.  We are going to start it this evening when she goes to bed.  She will get it through her IV.  I hope that it alleviates the pain more than the Oxycodone.  It would be nice for her to get more consistent sleep.

Our day was made brighter when Marie (Rachel's mom) came to visit us this morning and she told us that Rachel's ANC was at 100!  Rachel and Erin both have AML and it has been fun visiting with them each day and talking with them about our treatments.

Friday, October 8, 2010

Counts

Erin's ANC is still zero.  Yesterday her platelets were at 11 and now they are up to 79 because she got a transfusion yesterday.  Her WBC (White Blood Cell Count) is 0.6 (it was 0.7 Thursday and 1.0 Wednesday).  So, basically she's still sitting at zero for everything.  She has been at Primary Children's hospital for Round #4 for 22 days and her ANC has been zero for 15 days.

Blessings

I wish there was some way that I could thank everyone in person for the love they have shown us.  This trial has given us so many blessings, in particular the blessing to understand true friendship.

I am so truly thankful for all of the prayers and fasting on Erin's behalf.  Before I share the details of our experience I want to share a scripture that has been in my thoughts,

"And now, I, Moroni, would speak somewhat concerning these things;
I would show unto the world
that faith is things which are hoped for
and not seen;
wherefore, dispute not because ye see not,
for ye receive no witness until after the trial of your faith."
Ether 12:6

Yesterday I was scared about Erin's sore in her diaper area.  Having the Infectious Disease Doctors, Wound Care Doctor, and our Oncologist all worried just sort of made me more worried.  When I get that worrisome feeling I always find solace in drawing closer to the Lord.

I felt like I needed to ask Heavenly Father for a little miracle for Erin.  I had to evaluate within myself if I had enough faith in the Lord for a miracle.  I said a prayer in my heart and told my Heavenly Father that I would like to have Erin receive a Priesthood blessing and that I was going to fast for her.  I told Him that I knew that He had the power to heal.  I desired from Him that He would help her wound start the healing process and to soften the pain she was feeling.

I invited the Representatives from our church that cover Primary Children's to give Erin a Priesthood blessing.  There was a simply sweet spirit in the room and I felt the power that the Priesthood can bring into our lives.  I fasted, I prayed, and I felt good.

This morning our nurse woke us up at 7:00 am and said that the MRI people were ready for us (we weren't scheduled until 8:00 am).  I jumped up, brushed my teeth, and then we were out the door.  Erin was pretty calm and she obediently wore her face mask downstairs.  The nurse sedated her and then they strapped her to the MRI table, inserted ear plugs into her ears, and put a breathing tube up to her nose.  The MRI takes about 45 minutes so I went upstairs and got ready.  All the time, my anxious worry from the previous day was gone.  I just felt like everything would be okay.

I got downstairs and read a while in a waiting room.  The MRI technician came to me and said that Erin had woken up during the last of the MRI and that she was wide awake (and quite upset) in the hallway.  I got to her and calmed her down and we made our way upstairs with me carrying Erin and the nurse maneuvering her empty bed back to our room.

Then we waited.  I still felt good.  Erin seemed to be pretty happy herself.  She was using her hospital bed as a slide and she was crawling around and around on it.  I mention this because the past few days Erin has been carefully, and I mean very carefully been sitting on pillows and just watching TV because her bottom has been so sore.  She has barely moved in the past few days and now there she was scurrying around on her bed.

Around 11:45 am, just as Erin was nodding off for a nap, the Infectious Disease Doctor, a Resident, and a Medical Student (all of whom came yesterday) came to give me the results.  They said that they are sure that she has Cellulitis and that the inflammation is up into her groin and a little down her pelvis as well.  Then we all had a look at her sore.  To their astonishment it was less swollen, not shinny anymore, more red than purple, and it was smaller.  I think they were surprised.  The Resident said, "wow, it looks so much smaller!"  I think they were expecting to see that it had gotten worse.  The Doctor said that usually these things get worse and that the body doesn't heal sores like this while her counts are at zero, so he said the Meropenem (strong antibiotic) must really be working.  And I thought to myself that faith, prayer, and fasting really work too.

P.S.  I also have to add that the sore on her head is also smaller and less swollen and red.

I am very thankful for the peaceful feeling that I feel.  I don't expect her sore to just disappear, but I have been comforted that it isn't getting any worse.  I know that we are being watched over.  I know that there are angels attending to us.  I know that Heavenly Father loves us.  Thank you for your faith!

Thursday, October 7, 2010

More Information

Erin just received Neupogen through her IV.  The Neupogen will help Erin's body produce white blood cells so that they can help fight against her sore.  She is scheduled for an MRI at 8:00am tomorrow morning.  They upped her dose of Oxycodone from 1.0ml to 1.5mls.  She also has an order for Morphine waiting if we decide to give that to her.  She seems to be feeling a bit better since she had the platelet transfusion, the Neupogen, and a bath.  I think soaking in the bath really can help her diaper area heal. 

She is eating a red Popsicle and watching Strawberry Shortcake for the 2nd time today.  It's been a long day, but a good one too.  I got to visit Rachel Steele (our 16 yr old AML friend) who is in the end of her 3rd round of chemo.  I love seeing Rachel's beautiful smile.  Marie, her mother, came to our room and we chatted for a good amount of time.  It was really really really nice to talk with Marie about AML and how it's changed our lives.  We wish that Erin and Rachel could get together and hang out, but there's no doing that while Erin and Rachel's counts are both at zero.

Prayer and Fast for Erin

This evening, after dinner, John and I are starting a fast for Erin.  We would like to invite anyone else to pray with us and/or fast with us for Erin.  We are specifically asking Heavenly Father to help heal her wound.  If you cannot fast for her at this time we would like to invite you to add her to your fast on Sunday.

I haven't written much about Erin's wound in her diaper area because it's sort of an awkward subject, but it has really become a problem.  Over 2 weeks ago it started as just a red spot that we thought was diaper rash.  It's starting to really look bad.  It's dark purple, swollen, hard, and very painful for Erin.  She is taking Oxycodone around the clock to keep the pain down, but even then, it is still really bothering her.  She is taking Miropenem (really strong antibiotic) and Nafcillian (tissue antibiotic to kill bacteria).  We had a Wound Doctor and her regular Oncologist here and later her Infectious Disease Doctors (Doctor, Resident & Medical Students) will be coming in.  They are all concerned about her sore.

Dr. Fluchel just came in and told me that he had received the results from a blood test done today.  They are checking in her blood (somehow I missed all the details) for signs of swelling.  The results were 7 yesterday and they are 16 today.  It is not good that they have almost doubled.

It is Cellulitis, but they are concerned that maybe some of the tissues inside might be breaking down.  We are trying to get her on the schedule for an MRI tomorrow morning so that they can take a deeper look inside of it.  The biggest problem is that she just has no immune system to fight against it.  And, from the looks of her lab work today her ANC (Immune fighting white blood cells) and other counts are all just sitting at zero.  Her WBC (White Blood Count) went from 1.0 to 0.7 (it previously was moving up).  She is on day 21 of an estimated 35 day stay.  This 4th round really knocks the patients down for a long time, and everyone says it's the hardest round

Her platelets are really low and they are giving her a platelet transfusion right now.  Over the past 3 weeks her temperatures have been ranging from normal to 38.2 C (100.8 F).  I am so thankful that she hasn't had a real fever!  Ever so thankful!

We are so appreciative of the old and the young (and everyone in between) who are praying for Erin.  We know that with our faith put into action and all things according to God's will, then Erin's body can be healed.  These are some of the things we are fasting and praying for: We want to have Erin as comfortable as possible and not be in pain from the sore.  We want the sore to start getting smaller rather than bigger.  We desire that all her doctors and nurses who are caring for her will be blessed to give her the best possible care, and be inspired to know how to help her body heal as fast as possible.  Thank you for your love and prayers for our family.  We feel our Heavenly Father's love and we know that He is mindful of us and of our Little Air Bear. 

Today as Erin and I were singing the Barney "I love you" Theme Song she looked at me and said, "Mommy loves Jesus."  She had remembered our conversation from the last time I was here taking care of her and how we talked about how Jesus loves us and about how I love Jesus.  She is such a sweet little girl and I love her so much!

Wednesday, October 6, 2010

Day 20

Erin is doing pretty good.  Still no big fevers. 

The sore in her diaper area was looked at today with an ultrasound to make sure it wasn't abscessed.  They sedated her for the ultrasound and planned on poking the sore and draining it if it was abscessed.  I am glad it wasn't.  They have determined that it is Cellulitis, which is basically an inflamed swollen area.  It is caused by bacteria entering the skin and with her nonexistent immune system she hasn't been able to fight off the infection.  The doctors have started her on a new antibiotic (I don't have the name) that is designed to target tissue infections.  I hope it works. 

Her WBC (white blood cells) count is creeping up very slowly.  Over a week we've noticed that it's moved from 0.6 to 1.0.  I know that doesn't seem like much, but it's been really a big thing for us since the counts are moving UP as opposed to just being ZERO.  All of her other counts are still zero.

Monday, October 4, 2010

Childhood Cancer Reserach

We are excited to participate in
the Leukemia & Lymphoma Society's (LLS) 
LIGHT THE NIGHT WALK
this Saturday the 9th.

We are very appreciative of all of those who have donated to our Team Little Air Bear page
All donations go to fund research for childhood blood cancers.
We are joining in the fight to find a cure.

Some interesting facts . . .
**While survival rates for many childhood cancers have risen sharply over the past few decades, cancer is still the leading cause of death by disease for young Americans between infancy and age 15. -President Obama
**40 years ago, a blood cancer diagnosis was 10% curable.
**Today blood cancers are nearly 78% curable.
**In recent years, the amount of funding for childhood cancer clinical research from the federal government has been declining
**Each year more than 12,500 children and adolescents are diagnosed with childhood cancer.


You can give a tax deductible donation by

Day 18

Erin has been at Primary Children's for round #4 for 18 days.  Her ANC has been zero for 10 days and it looks like it's not coming up anytime soon.  The good thing is that she hasn't had a real fever yet!  The sore on the top of her head is healing pretty good, the red swollen part seems to be less red.  She got the sore when I was there - she bonked her head on a tray when she stood up.  On a normal person it wouldn't have done anything, but since her ANC was zero then it's just gotten pretty bad since her body can't heal itself.

She also has a sore in her diaper area (I won't go into details), and it seems to actually be getting worse - more red and swollen.  Dr. Fluchel moved her off of the Fortz (antibiotic) and put her on Meropenem (stronger antibiotic).  They are thinking of doing an MRI just in that area to see if it is abscessed, but I think the plan is to only do that if the Meropenem doesn't make a difference in the next two days.

Cecily, Caleb, and I called her this morning and she was so happy and excited to talk to all of us.  It's amazing how she can carry on a real conversation on the phone with us.  I asked her if she felt sick or if she felt good.  She told me she felt sick.  She told my mom this morning all about how she had gone to Hogle Zoo (3 weeks ago) and how she saw the elephants, giraffes, and monkeys.  She is such a sweetheart and she is enduring this round so well.  Today she has nurse Irish and we all just love him so much!  He is so good with her, she is in good hands!

Sunday, October 3, 2010

Live life fully, bravely, and beautifully.

When Erin was first diagnosed and we were doing even more driving than we are doing now I happened upon a radio station in Salt Lake City, "Positive, Encouraging, K-LOVE (107.5 FM)".  We don't have a CD player in our car and it just didn't feel appropriate to listen to anything else on the radio at the time.  So now, on my long drives, I flip on my K-LOVE station and listen to the uplifting music and stories.

As I was driving home on Friday night, the DJ shared a quote that just seemed so applicable to me that I had to search it out on the radio station website and share it here.

"One life on this earth is all that we get,
whether it is enough or not enough,
and the obvious conclusion would seem to be
that at the very least we are fools
if we do not live it
as fully
and bravely
and beautifully
as we can.”
Frederick Buechner

The part of the quote that struck me the most was that we have to live life fully and bravely and as beautifully as we possibly can.  I feel like even though things are difficult for us we are doing this.  In the beginning of this trail I debated about what to do with our lives.  Should we hold Cecily back from kindergarten?  Should I quit teaching piano?  Should I stop the children's piano, flute, dance and tumbling lessons?  Should I move to SLC while Erin is in treatment?  I had so many questions about what to do with our lives and my first response was to stop everything and run to the beside of my sick child.  But I didn't. I am so thankful that I didn't. 

Besides a very sick child, I also have a husband and two other children who are just as important as my sick child.  I made the determination in the beginning to do the best I can possibly do to make life in our family as normal as it was before. 

My wise younger sister gave me the advice that I needed to let people help me.  I had to humble myself to accept help.  This was hard at first, but it's getting easier.  I know that we were not meant to carry this burden alone.  The very heart of the gospel of Jesus Christ teaches us that we need to carry one another's burdens.  Thank you for helping us carry this burden.

Having our children involved in educational, musical, and other enriching activities has been such a blessing for them.  They have been able to continue living their lives fully and beautifully.  The hardest part is helping Erin live a beautiful life in a little hospital room.  We play music and sing and dance with her and we have been educating her with letters, numbers, and colors.  Her verbal skills have blossomed since she spends so much time talking with adults.

We are also living our lives bravely. 

The kids are brave when either mom or dad leaves to stay with Erin at the hospital.  We are all brave when we don't feel Erin's presence in our home.  John and I are brave on the days we spend apart.  We are brave when we wait for lab results and when we talk to doctors.  We are doing our best to live the principles taught in Joshua 1:9:

"Be strong and of good courage;
be not afraid,
neither be thou dismayed:
for the Lord thy God is with thee
whithersoever thou goest."

Our Heavenly Father is with us and He is strengthening us.  It reminds me of a line that stuck out to me the other day as I was watching a video about a girl whose infant life was almost ended when her mother tried to abort her at 7 1/2 months.  She is here today to speak about life and how important the sanctity of life is. 

She said, "God has a way of making a most miserable thing, beautiful." - Gianna Jessen (abortion survivor)

He truly has a way of making a most miserable thing, beautiful.  Yes, beautiful.  We have had so many wonderful, beautiful experiences.  I am thankful for the trials we have had to endure.  I am even more thankful for the beautiful blessings we have had, they far outweigh the grief that we feel.

So, when things get difficult I tell myself, "Okay, Jill!  Be strong and of good courage.  Live life fully, bravely, and beautifully.  And remember, God has a way of making a most miserable thing, beautiful."




Saturday, October 2, 2010

Saturday

Erin received platelets today.  Yesterday her monocytes (they are part of the ANC) started coming up and we were excited to see that maybe her ANC would start coming up, but then today her monocytes were back down to zero.  So, we sort of got our hopes up for nothing.  If this hospital stay is truly the average 35 days, then she still has 19 days left here.  She is having nightmares (at least we think she is) and waking up crying "no no" in the night.  She hasn't had a fever and she seems to be relatively healthy.

Sweet Things

Friday night I arrived home to find that two little house cleaning elves had visited. My kitchen floor was sparkling clean, my kitchen table and chairs were cleaned and oiled, the fridge and microwave were spotless, the dishes were washed and put away, my floors were vacuumed, the bathroom had been cleaned, my shinny black piano was finger print free, the living room shelves and nightstands were dusted, and the sheets on my bed were clean. It was such a sweet gift to me. John had also left me a note telling me how much he loved me and how much he missed me when we are apart doing our hospital shifts. What a sweet husband! I am so thankful for the love that I have felt.

It is sometimes overwhelming to be able to thank everyone who does acts of kindness for our family.  I hope that all of you out there who have helped us in some way know how appreciative we are.  I have written some thank you cards, but it got to a point where I got behind and then it just got too overwhelming to be able to write so many.  So, I apologize if you don't ever get a thank you card.

I want to do my best to thank everyone, but I know that it would be impossible to name everyone.  I am so thankful for the doctors and nurses that we know so well now that they are like family.  I am thankful for our social worker, Kristen, at Primary Children's who comes by with a sincere smile and encouraging words.  I am thankful for Bonnie who hosts the parent hours, it is so fun to go make a craft and be able to chat with other parents and hear their stories.  I am thankful for the Ronald McDonald house and the generosity they have shown us.  I am thankful for Diana, Cris, and Heather who have stayed with Erin in the hospital and given us time to do things.  I am thankful for Bert & Linda for sharing their home with us.  I am thankful for the cooks who have brought many meals (and restaurant gift cards) that have been dropped off at our house.  I am thankful for the Activity Day Girls, and the Young Women who have given their time to do something nice for us.  I am thankful for all of  the random texts from Jamie that let me know that she is thinking of us.  I am thankful for my neighbor Peggy who has faithfully watered the flowers on the front of my house, it is a joy to drive up and see the pretty flowers welcoming us home.  I am thankful for everyone who has watched our kids (the Duresch's, McAllister's, Parker's, Albrecht's, Strickler's, Thomas', Klaassen's, Jewkes', Shirk's, Dustin's, White's, Hunt's) and helped them do their homework, do their hair, or drive them to lessons.  I am thankful for all of the juice bars (and much more) that the Strickler's have shared with my kids.  I am thankful for the chats and talks from all of you when you ask about how we're doing.  I am thankful for my mother who spends 3 days of her week watching Erin at the hospital and then watching my other 2 kids while I am at the hospital.  I am thankful for my Dad and my sister Emarie for all their babysitting in SLC and in Logan.  I am thankful for all of the prayers that come from so many places in the world.  I am thankful for those of you who have secretly done things to help us out, but I don't know who you are. 

When you are in the service of your fellow beings, you are in the service of God.  Thank you for being God's hands.  We are not carrying this burden alone.  Thank you so much for helping us carry it.

Friday, October 1, 2010

Friday Pictures

Erin has her ups and downs.  This morning she's thrown a few fits, mostly I think she just really hates her tubes.  She got all wrapped up in them during the night and screamed for awhile while I unwrapped her.  It is just not natural to tether a two year old all the time, but it is sort of cute when she goes across her room pushing her IV pole with her. 

Right now she's really happy.  Her music therapist is playing with her and they are using all sorts of shakers and a Q Chord.  I have never seen a Q Chord before, but it's a very interesting instrument - it's sort of like a mini keyboard without the keys.  I will probably have to add it to my list of instruments I eventually would like to own.  Erin loves music.  We have a CD player that my aunt gave us to use here.  Playing music just makes the room so much more lively and less like a hospital room.  We play the Primary Children's CD's, the Mormon Tabernacle Choir's Heavensong CD, Children's Raffi Songs, and a Classical Piano CD that I put together.

Erin's sore on her head is slowly healing and her ANC (fighter white blood cells) has been at zero for 7 days.  Last stay her ANC was zero for 11 days.  Today the Nurse Practitioner told me that some of her counts are very slowly creeping up.  That gives me hope that her ANC will come up way earlier than expected.  So, hopefully we'll beat the average 35 day stay by a long shot.  This is me being really positive!

We had a good visit from Cami and her mom. 
She and Erin had fun playing Polly Pockets together.


Decorating our window.


Playing with play dough and wearing her new
"little bear" hat.  Isn't she so cute?


Having a little bath.


Playing with her Music Therapist.


We decided to play doctor today.
Erin and I attached some tubes to her doll's chest with a Tegaderm dressing.  She has been cleaning the tubes with alcohol wipes and putting steri strips (we cal them stickers) on the baby.  When we pulled the "stickers" off the baby didn't even cry.  This is good play for Erin so that she can understand all about the tubes and "stickers" and how they are used to help her get better.