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.

Wednesday, June 30, 2010

Happy Times with Acute Myeloid Leukemia

Happy Times with Acute Myeloid Leukemia

acute myeloid leukemia Erin was so excited to be leaving!

acute myeloid leukemia Smiling at Daddy

acute myeloid leukemia Giving Dad hugs and kisses


I just wanted to post a few pictures of her last days of Round 1 of Chemotherapy at Primary Children's. She is such a happy little girl in these pictures. We also wanted to say "thank you" to the door bell ditchers who left us delicious chocolate chip cookies last night. We are sorry that you had to run through the sprinklers to get to our front door. Thank you everyone for all your love and prayers!

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Tuesday, June 29, 2010

We're HOME! See ya AML!

Yesterday morning (Monday) after I went running I came back to find out that we were being sent home and Erin has finished round #1 of her Acute Myeloid Leukemia treatment. It's funny how I can sit in the hospital room all morning and have no one come in. But just when I slip out for a run the Social Worker and our Oncologist decide to visit. We were given the okay to go home because Erin's ANC has been moving up. It was all so exciting, but we were slightly unprepared because Erin's carseat was in Logan and I didn't have a car to drive home in. My mom took the older kids and John hopped into the van (good thing, because we had SO MUCH stuff to bring home) and brought up the carseat to me and took us home.

It was nice to just talk and ride in the car with John for the drive home. We have really only seen each other in passing in the last month. There was one day a bit ago when he came to swap me places and I just looked at him and thought, "wow, I haven't talked to him for days." It's strange to think that way about your husband. It's so nice to be together as a family.

I had high hopes and dreams for having a sit down family dinner (that my mom gave us) at the dinner table for the first time in 29 days and then to follow with a fun and spiritual Family Home Evening. We had dinner with a lot of whining and crying and without going into too much detail on the FHE let's just say it lasted about 2.5 minutes and ended with just about everyone in tears. It's amazing how our family was so-not-together. We are all short on sleep and the biggest problem is that the kids have had no routine for the past month. They just don't have a clue what we expect of them and what they should expect from us. And, Erin is a bit spoiled (bless that little darling!)

After devouring some delicious chocolate mint brownies my mom made we got the kids into the tub. At first we weren't going to let Erin in the tub with the other two because we have to be so cautious about not getting her central line bandage and her tubing wet. I fixed the tubing up into a ziploc baggie and then we used a sticky clear window thingy called an Aquaguard over her bandages. She was quite a plasticky site, but she was so happy to get in the tub with the other two. We sat over the kids like hawks making sure no one splashed or dumped water on Erin. Oh, what crazy things we have to do now. It's tricky finding a balance.

We got the kids to bed and it was such a good feeling having family prayer as an entire family. It's so nice to put the kids to sleep, they are so quiet and so sweet looking when they are asleep! We cleaned up the kitchen and then at 10:00 pm the Home Health Nurse came to teach us how to administer Erin's Fortaz (antibiotic) through her central line. At the hospital the nurses hooked up the Fortaz to a pump, but here at home we have to sit by Erin and in small increments give her the medication over a period of 5 minutes. We will do this 3 times a day 10:30 pm, 6:30 am, and 2:30 pm. We set clocks in the house and the alarms on our cell phones so we wouldn't forget to give it to her today. We'll get this really good when it becomes more of a routine. After some training and paperwork the Home Health Nurse left at 11:30 pm. Exhaustion has just become second nature.

Today (Tuesday) has been a great day! We got a schedule going for the morning and I just had such an enjoyable time teaching piano lessons today. I am so blessed with such fun students. We carted Erin off to my mom's house so that she wouldn't be in contact with anyone while I was teaching. Her ANC is 300 (as of Monday) and we won't have it tested again until Thursday. We are just crazy with taking precautions and hand washing and everything. This really changes a lot of things, but it's all good.

Cecily and I took a little trip to The Kutting Edge Salon where we were both treated to haircuts and some pampering. I was so thankful that my hairdresser Kristy had a last minute spot today because I just didn't know when I'd be in Logan to actually set up an appointment. Erin has been playing all day and just enjoying having her home to move around in. She plays with her toys like she's never seen them before. She is eating and drinking better here at home than she did at the hospital. I talked to her today and asked her if she liked being home. She said that she did. I told her that we would have to go back to the hospital again and I asked her if that was okay and she said nodded her head "yes." I'm amazed at how much she seems to understand.

Erin is scheduled to have her spinal tap and bone marrow done on Wednesday, July 7th and then on Friday, July 9th she'll be admitted back to the hospital for Round Two (of five) of Chemotherapy. We're 1/5 of the way done. Phew!

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Monday, June 28, 2010

Monday

It was great to wake up this beautiful Monday morning and have our nurse inform us that
Erin's ANC is 300!

Sunday, June 27, 2010

The Juggling Act of Acute Myeloid Leukemia

Acute Myeloid Leukemia is quite a juggling act.  Erin's ANC is still 100 today so apparently not enough of you did a dance for her. So, get up off your seat and do a little jig. Thanks! Don't you feel better? We are hoping that your calorie burning jig will send some good vibes so that tomorrow morning we'll find that her ANC is moving up.

John spent the weekend with Erin and he's been a better parent than I have at getting her to bed by 9:00 pm. It is so wonderful that I have someone so capable to go through this ordeal with. Even with Erin's longer sleep she was very grouchy today. I thinkthat she just didn't feel well because her hemoglobin was low. She got a transfusion (thank you all of you who are able to donate blood) but the transfusions always make her blood pressure go up so then the nurses are taking her blood pressure consistently every 30 minutes and that just drives Erin crazy. We just gave her nefidipine to lower her blood pressure and then I read her some stories and got her to sleep. Phew!

We have been doing some "training" on how to take care of Erin's central line and such. The central line is a tunneled catheter that enters the large vessels above her heart and then they come out of her skin mid-chest. Her central line's brand name is called a Broviac (I know you wanted to know that).

Due to the type of Leukemia Erin has she needed to have two tubes that come out of her central line because there are different types of chemotherapy that go through the different lines at the same time. Tonight I got to sit with the nurses and they taught me how to flush her central line and how to change the caps on the lines. I wish I could taking a nurse home with me so that they can help me do all these sterile techniques. I am so worried that we'll mess up and somehow get bacteria in her line.

I am going to make some big posters that have all the directions on them and tape them to my wall so that I can refer to them while I do all these new things. I know that soon enough they will become second nature to me, and I look forward to those days. It is nice though that we're getting our "going home training" done. That just makes me think that we will be coming home soon.

Today I spent at least an hour mulling over how we are going to get from here to there this week. It's really a pain to figure out each day who will be with Erin, who will be with Cecily & Caleb, who will be driving what car, and if that driver is even going to have a car to come home in, etc. It's a day to day battle that we have to deal with. I am so thankful for all of you and for your willingness to help us out. We often only know what we are doing a few days in advance so I appreciate it when you are so kind when we are so last minute. It's a true juggling act.

I'm sort of rambling tonight, but I wanted to write about something else. We are in ICS (Immunocompromised Unit) on the fourth floor and just happen to be directly below where the life flight helicopter lands. It took me a few days to realize that that is what I was hearing above us. The walls are really sound proof so we don't hear the life flight helicopter come in, but we hear it land *bump bump* and then I hear them wheel the gurney *rolling sound* and a door shut *bam*. I've grown to sleep through it but it just keeps reminding me that there are people out there who are suffering and I'm so thankful for those who dedicate their lives to sustaining life.

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Saturday, June 26, 2010

Improvement

Erin's ANC is 100.

Yay!

Please do a little dance in honor of Erin's ANC moving up!

Friday, June 25, 2010

Day 25 with Acue Myeloid Leukemia

Sometimes I run out of creative titles for these blog posts on Erin's Acute Myeloid Leukemia. This blog is the first blog I've ever done. I always thought blogging wasn't necessary for me to do. It takes a lot of time to put together these little blips on our life, especially when I worry that maybe my grammar isn't up to par. But, it has been a nice way for us to relay information so that you don't knock down our door trying to find out what is going on in our new strange life. It is also a therapeutic way for me to sort of vent my feelings and keep track of what is going on. We intend to print and bind this blog and give it to Erin someday since she will most likely not remember anything from the next 6 months.

Well, anyways, "day 25" is a great title when you think that we've been at the hospital for 25 days. It also sums up the fact that we're still here waiting and waiting for Erin's ANC to come up. It's still zero. I wish that there was something more exciting to say about it. To use the word "zero" for her ANC is really boring. Zero can be interesting though, like if you say that you have zero zits on your face, then zero becomes a very interesting word because then we would all envy you.

Today Erin played Barbies with the Kids Crew Volunteer while I worked off my french fries and donut. We also had a visit from the music therapist and Erin got to play with this little rubber thingy on a stick that made a duck sound. It was really cool. I helped change the dressing on her central line. It has been a week since we changed it and it is healing very nicely. She wasn't quite so upset while we changed it. I held her arms and another nurse held her legs while our nurse Gina changed the dressing. Things went smoothly and I'm thankful that Erin is healthy and that we are having a boring stay at the hospital. It wouldn't be good if we were worried about fevers or infections or other such sickness while her immune system is so low. It has also been a blessing that her blood pressure has stayed relatively lower than before so she hasn't needed medication for the last week to keep it low. When she woke from her nap today John was there and she was very excited to see him. Somehow, having two parents in the hospital room makes things so much more interesting for us all rather than being there with just one parent.

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Hugs and AML

Hugging is such a wonderful part of life. Tonight Erin (2 year old with Acute Myeloid Leukemia) was sitting on John's lap when the cooking staff brought in her dinner. The staff member said, "hi Erin!" and then Erin jumped off John's lap and ran to the staff member and gave her a huge hug. The staff person told John that Erin's hug had just made her day. Only an hour later Erin's night shift nurse, Bree, poked her head in her room. She said, "hi Erin!" Erin immediately ran to Bree and gave her a huge hug. Bree told John that Erin's was the cutest kid ever. Isn't it amazing how hugs can help us feel so good?

Today John's parents brought Cecily and Caleb back up here from Mesquite, Nevada. The kids had the time of their lives playing with their cousins in Mesquite. As I drove the kids back to Logan I couldn't help but feel a little sad. I had just seen John for a few hours and then we were separated again since he is taking the weekend shift at the hospital. I also felt sad that I had just missed an entire week in the lives of my oldest children. I know they were in good hands and that they hardly missed me, but I feel like I've missed out on so much. Nothing can replace being a mother to your children. And nothing can replace being together as an entire family.

I drove the kids home. Caleb asked me if he was going to sleep in a sleeping bag again. I told him that he would get to sleep in his very own bed. What a novelty! I gave them a shower and then tucked them into bed. Cecily had given me some grief when it came time to brush her teeth. She kept saying, "I want dad to brush my teeth." She knew dad wasn't home. This is one of her tactics to getting out of doing something. I told her that she had no option other than to have me brush her teeth. Later, as I tucked her into bed, I told her that I was sorry that we hadn't gotten along during her teeth brushing. She then gave me the strongest most loving hug around my neck. It brought tears to my eyes. I told Cecily that she gave the best hugs in the whole world and I asked her if she'd give me one more. I love how forgiving and loving children can be. The strength in her hug melted my heart and helped me feel her love for me and Heavenly Father's love for me. It sometimes surprises me what I learn from my kids.

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Thursday, June 24, 2010

Day 24

Erin is eating a red Popsicle and watching Baby Einstein's Meet the Orchestra. Our nurse today was quite impressed that Erin knew the word Orchestra. We have had the best care here at Primary Children's Medical Center. Every one of our nurses has taken so much time for us. Each nurse only has 2 patients and they work 12 hour shifts. We L-O-V-E our nurses. It's always a treat when we get the same nurse 3 days in a row.

When a nurse comes in the room they take time to play with Erin. We've had nurses sit with her and play with her for 15 minutes before they take her blood pressure or temperature. They are so relaxed and don't ever seem to be in a hurry. They often let her take their stethoscope and check their heart. Today Erin's nurse offered to sit with Erin so I could go workout since the Kids Crew downstairs was short on volunteers to play with patients. It was absolutely thrilling to get out of the hospital room and run 3 miles and workout. The Jewish Community Center where I can workout is amazing and I'm sure I'm being spoiled in being allowed to use it whenever I want for the next 6 months. I need it though, it is not kind to ones figure to just sit here and eat.

Today Erin and I played hide-and-seek. A 2 year old thinks it's pretty cool when you hide over and over in the same place in a small room. We also played with an ABC puzzle to work on Erin's letter sounds and recognition and then we played on starfall.com to further the fun with letters. We took care of her baby doll and stuffed animals with her doctor set, and we watched Cinderella for the hundredth time.

Erin's ANC is still zero. Not much of an improvement from the zero it was yesterday. I was planning on asking the doctor if it was a high zero or a low zero. We slept pretty good last night. Erin woke at 1:30 am and cried (probably more bad dreams) but after that she slept through until 7:30 am. It was sweet to have her wake up and ask me to come snuggle her.

Wednesday, June 23, 2010

Day 23

acute myeloid leukemiaToday we had ups and downs. Erin is a bit low on sleep. She didn't sleep so well last night, she kept waking up and crying and saying "stop it." I think she's having nightmares of someone taking her blood pressure. We're feeling a bit pent up here hanging out in this room all day. Sometimes I think it'd be nice to just walk out the door and take Erin for a walk. Soon I hope!


To break up the day I asked the Kids Crew to send up a volunteer to do a craft with Erin. The volunteer was so good. They laughed and danced together. They made cute pictures with foam stickers and colored them acute myeloid leukemiawith crayons. They played with streamers taped on a ruler. It was so nice to have someone else here entertaining Erin.

After the volunteer left our friend Cris came by for a visit. Cris was John's roommate when we were engaged and he's been a good friend ever since. He just works right here at the hospital so he often stops by at the end of his day to play with Erin. He is one of her favorite playmates. When he came to the door she yelled "hi Cris!" She was very excited to see him. They tossed a ball, did some silly things with her bunny, and then Erin painted Cris' fingernails (sort of - he was smart enough to put on a surgical glove first). See picture above of Erin painting Cris' fingernails. I didn't fare so well with the fingernail polish. I have it up and down my left hand.

I hope that Erin sleeps well tonight. We could use a full night's sleep so that we can have a better day tomorrow.

Still zero

This morning the doctor came in and told us that Erin's ANC is still zero. I hope it starts rising soon. We can't come home until it starts coming up. Come on Erin, make some neutrifils so we can go home!

One of the little boys in our area of the hospital just went home. The nurse told me that it took him 19 days for his counts to come up high enough to go home. Erin's ANC has been zero since June 10th, so it's been 13 days for us so far.

Tuesday, June 22, 2010

Count Your Many Blessings - Even With Acute Myeloid Leukemia

I have been thinking a lot about how blessed we've been, even as hard as it was to hear that Erin has Acute Myeloid Leukemia M7. It's hard to put into words how this challenge has truly been a blessing to our family. I don't mean to put things lightly or to be frivolous with the severity of Erin's illness, but there has been so much silver lining throughout all of this.

"Count Your Many Blessings Name Them One By One"

It couldn't have happened at a better time. Just 5 days before Erin was diagnosed, John finished a school year with Cache County School District and had just begun summer vacation. My accompanying had slowed down so we suddenly had a lot of extra time on our hands.

It's summer. Yes, we are stuck inside, but at least we don't have to worry about H1N1. The hospital doesn't let anyone under age 14 up here during flu season, that would've meant that Cecily & Caleb wouldn't have been able to even see Erin while she was here.

I have gained a better eternal perspective on life. My eyes have been awakened to what I can take with me when I leave this mortal body. I can't take my newly remodeled bathroom, I can't take my piano, I can't take my favorite jeans, nor can I take the money in my pockets. What I can take with me is my family, my relationships with others, and my heart.

A year ago we seriously considered taking a job in Arizona. If we had moved we wouldn't have had the family support that we have here. And, we wouldn't be near as close to Primary Children's. Living so close to my parents, so many cousins, and John's sister and her husband has been a humongous help.

I have learned to cry. I am serious when I say that I was a cry-only-three-to-four-times-A YEAR kind of girl. There have been many times I have wanted to cry, but I didn't. Maybe I was ultra-tough and now I'm being softened. In any case, I've made up for the last 31 years worth of crying that I missed. It feels good.

Just a few months ago we considered buying a new home but it just didn't feel right. I can't imagine being in this same position without the amazing support we've received from our wonderful ward and neighbors that we have grown to love so much in the last 6 years.

Being on the receiving end of so many people's generosity is an overwhelming feeling. I used to be so tough and hard and not want anyone to help me. I have learned to say "yes" when people offer help.

The laptop I had been using needed to get back to Logan. John and I talked about buying a new laptop for me here at the hospital so that I could have some connection to the outside world. I took the laptop back to Logan on Monday afternoon and to our amazement a brand new laptop arrived in the mail that same day as a gift from all of my siblings. We didn't tell anyone that we needed or wanted to buy a laptop. It's wonderful how the Lord works.

Just a week before Erin's diagnosis I organized everything. I printed out my summer piano teaching schedule and had it ready to go, I made 3 month summer calendars for the Young Women and handed them out to the leaders, I retrieved some letters from parents for an activity and turned them in almost a month before they were due, I had all my finances for June set up and ready to be paid. These things may seem trivial, but when this trial turned our world upside down, I had the peace of mind that all the "assignments" I needed to do were already done.

Due to the generosity of several people (including the mechanics at Expertec) we were able to do some major work on the engine of our van and it is running like new again.

One of the biggest blessings for me is that I'm beginning to understand some of my baptismal covenants more. When we are baptised we covenant to bear one another's burdens, that they may be light. We promise to be willing to mourn with those who mourn and comfort those who stand in need of comfort. All my life leading up to Erin's diagnosis I guess those phrases were just words to me because I didn't realize that I didn't understand them until now. Never in my life have I been so lifted in my burdens, never have I had so many people mourn with me and comfort me. I am ashamed that I haven't been more willing to bear other's burdens and mourn with them. Having a child with cancer has helped me see so many Christlike examples. I am humbled by your willingness to mourn with us and to help us lift this burden so that it is light. Thank you.

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Monday, June 21, 2010

The Days Go By As Erin Battle Acute Myeloid Leukemia

Erin has been at Primary Children's Hospital for 21 days (round 1 of 5) fighting her Acute Myeloid Leukemia M7. She is done with her first round of chemo and now we are just in waiting mode. Waiting and waiting and waiting. The doctors come in each morning to give us an update on her blood work and her ANC (fighter white blood cells) is still at zero. Some of her other blood counts are slightly higher than yesterday so we're hoping to see some improvements soon.

I talked with Dr. Verma, Erin's Oncologist, today and she clarified that we can leave the hospital as soon as her ANC starts rising. Originally I thought that she had to have an ANC of 500. So if she is 200 for a few days and her counts are improving then they will let us go home. Of course I was curious about when she thinks that will happen and she said maybe the end of this week. Wow. To be home again. Of course we'll have to take extreme caution with having her home with such a low white blood count. A normal person has an ANC of 2000-3000.

We will get to come home for about a week, then we will come back here to do an outpatient bone marrow test and a spinal tap. These tests will let us know how much leukemia is left in her bone marrow. When she was admitted she had 18% leukemia blasts in her bone marrow. We will get the results 3 days after the test is done and then she'll be re-admitted to Primary Children's for her 2nd round of chemotherapy. Even if there is no leukemia seen in her bone marrow she will still do all 5 rounds of chemo.

Last night Erin went to bed around 10:00 pm and I fell asleep at 10:30 pm. She and I slept amazingly well. I barely remember waking in the night. I woke up this morning at 7:30 am. I can't believe I slept in that late. I laid in bed until 8:10 am when Erin woke up. She had such a fun day yesterday I think it really wore her out. She is so happy today. She's eaten almost 15 oreos this afternoon. What a lucky girl! Right now she is coloring on her stuffed animal with a purple (washable) marker. There are some things that I can't believe that I let her do. I am a different mom. Yesterday she colored on her hospital bed and this morning she colored the armchair by her bed while I was in the shower. It's a good thing this is a children's hospital, they are used to this sort of thing.

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Sunday, June 20, 2010

A Bald Head: Acute Myeloid Leukemia

Bald is beautiful.
Acute Myeloid Leukemia M7

acute myeloid leukemia
acute myeloid leukemia
acute myeloid leukemia
acute myeloid leukemia
acute myeloid leukemia
acute myeloid leukemia
acute myeloid leukemia
We got fed up with hair falling all over the place. We got the hospital shaver and took all of Erin's hair off. She has the most beautifully shaped head. Her green eyes and red lips are just so much more striking now. She has been dancing around and singing to Dora this afternoon. It's been a good day. As I have been thinking of Erin loosing her hair I am reminded of a scripture about the resurrection. Every person will be resurrected and we are promised "and even there shall not so much as a hair of their heads be lost; but everything shall be restored to its perfect frame" (Alma 11:44).

John's family from Mesquite took Cecily & Caleb today to Mesquite for a week. Our kids were sooo absolutely thrilled to get to spend a week playing with cousins. We are so appreciative of them to offer to take our kids for the week. It will be nice for John while he has his last class for his Administrative Certificate. I will get to spend the week here at Primary Children's with Erin. She is such a joy to be around. She is so strong and she has been doing so well coping with her situation. The Lord tells us to come unto him as a little child. There is so much we can learn from our little two-year old.

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

2 Year Birthday While Fighting Acute Myeloid Leukemia

Today Erin turned two years old, in the hospital, while battling Acute Myeloid Leuekmia M7. She is have a fantastic day! This morning 7 nurses and staff came into our room in very silly hats and sang "happy birthday". Then she opened her presents and enjoyed playing with each one. Her ANC is still zero, but her other counts are slowly rising so things are looking good with her. Her blood pressure is still a bit high, but not high enough to require medication. It's been a good birthday for her.

Last night the nurse suggested we put Erin's hair in pigtails so that her hair wouldn't be falling all over the place. When she woke up this morning her hair was in two dreads, it was really gross. I pulled out a pair of scissors and just chopped the pigtails off.  I know, it sounds drastic.  But, her hair is falling out like crazy. As you'll see in the photos, it wasn't one of my best haircuts.  I think we'll celebrate by shaving her head today.
acute myeloid leukemia

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Wedding Pictures

John and I at Diana & Brad's wedding reception.

Our family (minus one)


Caleb pond jumping


Caleb & I


I am so thankful that these two are such good friends.


Saturday, June 19, 2010

Wedding Day!

Today John's sister Diana was married in the Salt Lake City Temple. It was an absolutely beautiful ceremony. There was such a wonderful peaceful feeling in the Sealing Room and the Spirit reminded me how wonderful eternal marriage is. I am so thankful that I married John! He is a wonderful companion, he is so giving and selfless in our marriage. It is wonderful to have him by my side as we go through the trial of having a child with a life threatening illness.

We are so thankful for my cousin Heather who watched Erin last night and this morning so that we could attend a Celebration dinner and the Temple Sealing. We are so thankful for John's cousin Jessica who watched Cecily & Caleb while we were at the Temple Sealing. And we are so thankful for my cousins Dan & Holly who watched Cecily & Caleb so we could enjoy the Celebration Dinner as a "date night" without kids. It's tricky juggling getting babysitters lined up and arranging who will be where, but we are completely thankful for everyone's willingness to step in and help!

We had a volunteer from Kids Crew and a nurse watch Erin while we all went to Heritage Park for Diana's reception. Then I came back and hung out with Erin while John and the kids enjoyed themselves at the reception. I d0 wish though that I had been there to see Diana chuck her wedding bouquet in the little pond and to see Caleb fall into the pond. It was a very small pond and really only his shoes and pants were soaked. Poor kid. It was a good day!

Friday, June 18, 2010

The Inevitable

Today Erin and I sat on a blanket on the floor to have a tea party. I reached over to comb her hair down with my fingers and my heart sunk as I pulled my hand back. The back of her shirt and my hand were frosted with Erin's beautiful blonde hair. I have always known that her hair would fall out, but somehow I just wasn't prepared for it actually happening. My eyes filled with tears as I called John to tell him, and then our social worker came in for a visit and I sobbed some more with her.

I know it sounds drastic, but the hospital has an electric razor to use if we want to just shave all of her hair off now. As her hair falls out it will get all over her bed, pillows, floor, and us and it can be rather irritating and itching to have it all over the place. I'm not sure if we'll shave it off or if we'll just let it fall out on it's own. I do know that I can't shave it without John being here with me to do it.

I am glad that I am here with her now and that I was able to be the first to see this new change. I cannot change what is happening, but I'm glad that I was here to witness the start of it. This is just another step in raising our little air bear, like the first time she took a step or the first time she said, "ma ma." I am grateful that I get to be a part of this incredible little girl's life.

Early Birthday Present

In honor of Erin's birthday on Sunday,
our cousins Kirk & Becky donated blood.
Thank you Kirk & Becky!

Thursday, June 17, 2010

Late Nights with Acute Myeloid Leukemia

It's almost 10:30 pm and Erin is still awake reading books (in the dark) in her bed. My once strict 8:00 pm (on a good day 7:30 pm) bedtimes are out the window since Acute Myeloid Leukemia changed our lives. I guess though that when you are in the hospital you just sleep when you can. It has been easier though to sleep now that we aren't doing chemo at 10:00 pm and we don't have to change her diaper every two hours.

We are just biding our time until her blood counts go up so we can take her home and say goodbye to our first round of five treatments. Erin's blood pressure continues to be high, but the medications are lowering it. One of her chemo drugs is tough on the heart. Before we started chemo the Dr.'s did an EKG and ultrasound. When she is partway done with the chemo treatments they will do another ultrasound and EKG to make sure that there isn't any heart disease. We are thoroughly enjoying being all together here at the hospital! The kids are keeping Erin happily entertained either through play or fight. She is still a precocious two year old. This little lady is going to expect us to all wait on her hand and foot when we take her home.

We have had a few visitors and a fun filled day.
We met Daisy.
We also met this really cute dog.
To our surprise, Belle came to visit!
Erin and Belle had a good chat about princesses.
Belle read a story to the kiddos. They were completely captivated!
My cousins Melanie and Ryan visited for a bit and dropped off a few adorable hats.
They shared some wisdom about staying in Primary Children's
(their son had a liver transplant and they also stayed in ICS)
And, Cecily gave Erin that "pink snow" she is holding.


While Erin took a nap we took the kids to Hogle Zoo for a little break.

As I post these pictures, I am reminded about the most important things in life. Last week I took the kids to Kmart to do some shopping. We got a bit silly and I started tickling them in the shopping cart. I told them that the most important thing in the whole world is that I tickle them! Defiantly Cecily replied, "No it's not, Mom. The most important things are Jesus and Family."

How true to have a four year old remind me that the most important things in life are the Gospel of Jesus Christ and family. That is what life is about, right? To come to earth and gain a body and have experiences. We live in a family with a loving mother and father who teach us about our Savior and how to be like him so that we can make good choices each day and some day return to live forever with Jesus and our families in a glorious place.

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Wednesday, June 16, 2010

All together

We are all together at Primary Children's today! We've been having a great time together reading books, playing with toys, and watching DragonTales. Erin is doing well. She had platelets yesterday and a blood transfusion today so she has a little more energy now. Her ANC (fighter white blood cells) are still zero. Her bone marrow sore is looking so much better and is much smaller thanks to her slue of antibiotics. She is done with her eye drops and she doesn't have to be hooked up to her IV as often so she is able to travel around her little room.

In case you were wondering (and for our records), she is on four antibiotics Fortaz, Septra, Vancomycin, and Voriconazole. She is taking Nefedipine to lower her blood pressure, and she is taking Vistaril/Hydroxyzine/Atarax for nausea.

AML Video: The dancing princess

An easy way to get our minds off of Acute Myeloid Leukemia:
A little dancing to "bibbity bobbity boo."
video

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Pictures! Still Smiling with Acute Myeloid Leukemia

acute myeloid leukemiaGiving the doggy a kiss.

acute myeloid leukemia The solar powered dancing flower.

acute myeloid leukemia
All dolled up!

acute myeloid leukemia
Making hot chocolate.

acute myeloid leukemia
Counting to 10 with Caleb.

acute myeloid leukemia
Reading stories with Dad.

acute myeloid leukemia
Dancing to her Princess music.

acute myeloid leukemia
Snuggling her bunny with Grandma Swenson.


Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Tuesday, June 15, 2010

A good day with Acute Myeloid Leukemia

I talked with my mother who has been with Erin (who has Acute Myeloid Leukemia M7) for the past two days and she said that Erin has been having a really good day. There are all types of volunteers who come through Primary Children's Hospital and today they had a woman with her very large Dalmatian stop by. My mom said that Erin just petted the dog so softly and the dog licked her face and she was happy to get a kiss from the dog (they probably wouldn't have let the dog in her room if she could catch something from him).

Erin is done with her first round of chemotherapy. She had her last eye drops last night. We are so grateful for that, they were almost the worst thing for Erin. The eye drops were to keep her eyes moist since one of the chemo drugs dries out her eyes. The doctors have also started weaning her of the anti-nausea drugs too. Erin's blood pressure is still a little high so she is still on a medication to lower it. The doctors have been giving her benadryl to combat her allergic reaction to the vancomycin (antibiotic). We've noticed though that she starts to really flip out after they give her the benadryl. I guess that some kids react badly to the benadryl. After she flips out and stops screaming, she usually falls asleep. They've decided to stop giving her the benadryl and now they're giving her something else but I don't know what drug it is yet. Her spot on her back/hip where her bone marrow was drawn is looking a lot better thanks to the vancomycin.

I will have to post pictures when I remember to take my camera to our hospital room (I always seem to leave it in the car). We have a very nice set-up in our room. We have a low shelf that we have stacked with books and all her toys that people have so generously given us. She likes to sit on a blanket on the floor and play in her little toy area. It's almost like when she was at home and she would sit in front of her book shelf that was covered in books and toys.

We have been so grateful for the generosity of everyone, even people we haven't met. We are so thankful for your prayers, friendships, your gifts, your love, your thoughts and notes, and your willingness to help us in any way. Thank you!

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Monday, June 14, 2010

Gateway Discovery

Last Friday we took the hospital pass to the Discovery Gateway. Cecily, Caleb and I spent about 5 hours there enjoying ourselves. It was nice to do something fun with the kids. We were so excited when partway through our day we ran into some of our good friends, the Lambert's!

Sunday, June 13, 2010

Visiting Erin

We have had so many people ask about coming to visit Erin. We are extremely appreciative of the support that we have received from everyone. We are so grateful for caring friends and family.

While Erin's ANC (fighter white blood cells) is at zero we have to be very cautious about who is in contact with Erin. Erin's isn't allowed outside of her hospital room until her ANC rises to 500 (average ANC is 2,000-3,000) and even then she has to wear a mask. Our family is able to spend time in her room with her because she shares much of the same bacteria in her body as we do. She is currently on two very strong antibiotics and tomorrow she will start an antifungal medication. It's hard to fathom that she could get sick from even the air around her or the carpet in our house.

While Erin's ANC is at zero the hospital is taking a lot of precautions on those who are in contact with Erin. They would like to limit visitors to family and ask that no children come in her room. When her ANC starts coming up they will most likely reduce the restrictions.

Round #1 Last day of Chemo for Acute Myeloid Leukemia

This morning at 10:00 am Erin had her last dose of chemotherapy for this first of the five rounds to kill her Acute Myeloid Leukemia M7. Her ANC (fighter white blood cells) are at zero and will stay at zero for a few weeks. In approximately 3 weeks when her ANC comes up we'll get to bring her home. We are not sure how long we'll get to bring her home. We've heard we can have her home for about 3-15 days before she'll go back to Primary Children's for her second round of chemotherapy.

Grandpa Swenson has been staying with Erin since Saturday and they are having a great time together. He has been able to get her to eat all sorts of food like cheerios and ice cream. Tomorrow Grandma Swenson will spend 2 days with Erin. She is getting special treatment from her extended family.

We have enjoyed being in our home, but we have greatly missed being with Erin. As we were driving back to Logan Cecily asked us when we were going to see Erin again. She begand to cry and said that she missed Erin. Today Caleb told me that he wanted to go back to the hospital. It's sad that the hospital is where our family is all together, but we'll do what we need to to have our Erin back with us.

Erin is back on the Benadryl (to prevent an allergic reaction) and Vancomycin (antibiotic) for an infection in her bone marrow site. The doctors have been watching her site where they took the bone marrow out and it has gotten smaller, but it is still raised, hard, and red. With her white blood cells down her body doesn't show signs of infection like you or I would have. Her body doesn't produce puss or swelling and often all her medications will mask a fever. The doctors are concerned that she could have a staff infection at her site. Her blood pressure has been high since starting chemotherapy so the oncologist also started her on a medication to lower her blood pressure.

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Saturday, June 12, 2010

Another Day With Acute Myeloid Leukemia

Before Acute Myeloid Leukemia hit our 2 year old I was so on top of things. I am usually so detailed and organized. But ever since June 1, 2010 I haven't been able to keep track of what day it is. I continuously ask myself what day it is. This is so unlike me. John is feeling the same way. We have to laugh when one of us asks the other, "what day is it today?" We ask each other this question multiple times a day. It's a very strange thing and I hope it goes away soon.

Today we had to change the dressing on her central line. Usually the central line only needs to be changed every 7 days. We have been changing it every 2 days. I don't know if it's because her platelets are low so her blood isn't clotting. I don't know if it's because she tries to scratch at it all the time. I don't know if it's because she almost pulled the line out last week. But it just keeps bleeding and it is very bruised. I wish it would heal soon.

A few days ago (of course I can't remember the day) I was taught how to clean and put on her dressing for her central line. I watched once on "Chester" (a dummy chest with a central line). Then I did it once on Chester. Then I turned around and did it on Erin.

Half-way through I just about caved, but I was the only wearing the sterile gloves so I held back the tears and kept going. It took 2 nurses to hold her down and all the while she was kicking me in the face and screaming "stop it." When we were done I cradled her in my arms, I felt awful. I rocked her to sleep and then I went out to my car and cried for an hour.

Today I let the nurse change her dressing and I held her arms while another nurse held her legs. All the time she was screaming and I just kept telling her how strong she was and how good she was doing. I wonder if I was also telling this to myself. It is hard, but I am a strong person. Erin is strong too. Great miracles will and have come. We are ever aware of the Spirit in our little hospital room. Thank you for your prayers.

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Acute Myeloid Leukemia: Medically Speaking

Some of you have wanted to know more about Erin's diagnosis in detail. Here is what we know.
  1. She was diagnosed with AML (Acute Myeloid Leukemia) M7.
  2. The M7 means Acute megakaryoblastic leukemia. There are several types of AML. In M7, AML starts in early forms of cells that make platelets.
  3. With her type of leukemia she has some chromosome abnormalities. About 60% of people with AML have chromosome abnormalities. She has a translocation between chromosomes 1 and 22. We do not know at this time if her chromosome translocation is favorable or unfavorable because it is not a commonly favorable or commonly unfavorable chromosome abnormality.
  4. The bone marrow biopsy showed 80%-90% blasts in her bone marrow. These blasts displace and interfere with the production of normal red cells, white cells, and platelets in the marrow. To be in remission she will need at least 5% blasts (blasts are normally 1 to 5 percent of marrow cells).
  5. Younger patients fare better than older patients.
  6. Her white blood cell count was not abnormally high so that is favorable.
  7. She has not had any prior blood disorders or other types of cancer so that is favorable.
  8. There is a 70% - 80% success for remission.
  9. Nearly 50% are relapse-free for 5 years.
Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Friday, June 11, 2010

Acute Myeloid Leukemia: High, Medium, or Low Risk.

When Erin was diagnosed with Acute Myeloid Leukemia M7 they did a blood test to see if she was high, medium, or low risk for a bone marrow transplant. Cecily & Caleb did a blood test to see if they were a match for a transplant. The Oncologists told us that if she was low risk they wouldn't do a transplant. If she was medium risk they would only do a transplant if one of her siblings were a perfect match. If she was high risk then they do the transplant with another bone marrow donor.

Today we found out that Erin is medium risk for a bone marrow transplant. However, Cecily & Caleb are NOT a match for her. So we will not do a bone marrow transplant unless she relapses after we've done these 5 rounds of chemo.

Her ANC (Fighter white blood cells) are at ZERO. The hospital is taking a lot of precautions on those who are in contact with Erin. They would like to limit visitors to family and ask that no children come in her room. When her ANC starts coming up they will most likely reduce the restrictions.

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Thursday, June 10, 2010

Acute Myeloid Leukemia and Finally Being All together!

We are all here at Primary Children's (ICS the Immunocompromised Unit) having a ball with Erin as she fights her Acute Myeloid Leuekmia M7. My mother has been here since last night and she said that they had a great night. Erin is really happy. She is L-O-V-I-N-G having Cecily & Caleb here to play with.

We brought a bunch of playthings that people have given us. We have an AquaDoodle, Princess CD Player, Tea set, Doctor kit, a Webkinz, stuffed animals, notebooks, and a water color paint book. We have appreciated all of the gifts for Erin (and Cecily & Caleb). They have enjoyed having new things to play with to take their minds off of this new family situation and to sort of fill the void of a missing sibling/parent.

Right now Erin is going crazy with her tea set, making us all cups of hot chocolate. We are going to be confined to our room for the next few weeks until her ANC (fighter white blood cells) reach 500. I believe that when they reach 500 we will get to go home to Logan. It will take approx. 3 weeks. Right now, her ANC is 100. Lots and lots and lots of hand washing!!! No sick visitors please.

We just wanted to let you all know that we are doing really well. It is nice to be together as a family. When we came through the door, Erin yelled, "Mommy, Daddy, Cecily, Caleb!" She and Cecily have been snuggling in her hospital bed and Erin has been tickling and teasing Cecily. They are still the same little kiddies that they were before the Leukemia.

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Wednesday, June 9, 2010

Acute Myeloid Leukemia and An Eternal Family

Last night Aunt Diana stayed with Erin in the hospital while she battles her Acute Myeloid Leukemia M7 and today my mom is staying with Erin while John goes to some training and while I am teaching some piano students. I drove back to Logan with my heart pounding with excitement to see Cecily, Caleb, & John. We had our first night together in our home as a family since this upheaval.

It was bittersweet though. As I was getting ready for bed, my body routinely went to Erin's room to do the usual check-on-Erin-before-I-go-to-bed but her little bed was empty. Her room was so quiet and lonely. Her toys were nicely sitting on her shelves and there wasn't a pile of books on her bed. My heartstrings were torn as I realized that our family is NOT together. A small glimpse of eternity was opened up to me. I was given the perspective of how it would feel if I spiritually lost one of my children. Even as I lay in bed I couldn't feel her little Spirit in our home. It was an awful feeling and I try not to think of it as I am here.

I am so thankful that John and I have been sealed for Eternity by the Holy Priesthood in the Temple. There is no "death do you part" for our family. We are an eternal family and even though Erin's presence is not with us right now as she is living in the hospital we will forever be a family. The gospel of Jesus Christ and his Plan of Salvation for us is a true gift.

I can't wait to see her tomorrow. She has finished day 6 of chemo. Only 3 more to go! Her fever has been lower and the Doctor actually took her off of the antibiotic Vancomycin. When they did a blood test they found that it wasn't working well enough. I'm glad they took her off of it because the redness and itching was unbearable for her.

I taught piano lessons today and it was such a nice feeling to do something that is normal. Almost everything we do now is different than it used to be. I was such a scheduled mother and it's sort of chaotic feeling to not have a schedule anymore. My piano teaching is so organized and scheduled and so far it's really been the only thing that doesn't seem insurmountable. I am thankful for my talents and my abilities to share music with others.

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Tuesday, June 8, 2010

Acute Myeloid Leukemia: With a 2 year old

Erin is almost 2 and she has Acute Myeloid Leukemia M7. Even though she's here in the hosptial she's still a two year old toddler with a two year old toddler way of thinking. Sometimes she's so sweet and patient, but other times she a tantrum thrower. We've decided to give her an opinion whenever we can. Like, today they let her pick which arm they put the blood pressure cuff on. I let her pick her movies we watch, I let her open the DVDs and get the disk for me, I let her push "play" on the remote. The opposite also happens, we have to hold her down to put in her eye drops and to give her oral medication.

I am trying to be as patient as I can possiblly be with her. It's hard when she yells "stop it" to me or the nurses. It breaks my heart to see her sobbing when something hurts. We will pretty much be confined to our hospital room for the next 3-4 weeks. We are doing a lot of movie watching. Aunt Diana has been getting us DVDs from the SLC Library. The hospital has a ton of movies, but they are geared mostly towards ages 4 and up. We do a lot of coloring, being silly with stuffed animals, doing puzzles, and reading books. I hope that when we get done with this that we are still good little buddies.

Last night I read something about "breaking the news to your child that they have cancer." I realized that I've never really said anything to Erin about her having cancer. Of course, she's very young, but she's also very smart. So last night when things were quiet I told her that her body was very sick. I asked her if she knew that too. She nodded her head. I told her that Heavenly Father would help her feel better. I asked her if she believed that and she nodded her head "yes" again. I really think that she understood our little conversation, she knows what's going on.

This morning I read 3 Nephi 17. What a blessing to be on that chapter in my reading in this particular time of my life. Our Savior has such a beautiful love for little children.

Yestersday I went to the Parent Resource Center and they gave me a 6 month membership to the Jewish Community Center where me and my family can swim, take workout classes, run on the track, play basketball, tennis, etc. Today I went to running while Erin was sleeping. It felt so good to do something physical!

The Resident just came in and told me that Erin's platelet count is 18. A normal person is 150, so now she's going to get a transfusion. I hope you're all out donating blood today! I need to do it myself!

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Acute Myeloid Leukemia: Half way to 10 days of chemo.

We had some fun visits yesterday from Grandma & Grandpa Hughes and Aunt Annette. They got to see Erin who is battling her Acute Myeloid Leukemia M7, but they came just as she fell asleep and she had a 3 hour nap so I was sad that I didn't get any pictures of them holding her. I'm glad she slept so long, it's been the longest stint of sleep she's had. It was wonderful for me to visit with our family and spend some time out of the hospital room.

Our good friend Cris came to visit again and we got her to wear her mask/necklace yesterday (almost over her nose/mouth) and her ANC (fighter white blood cells) were at 700 so we had fun making hot chocolate at the kitchen set in the toy nook. And then yet again, Erin ran up and down the hallways. A normal person has an ANC of 2000-3000. The doctor said she'll have an ANC of zero in a day or two.

We got back into the room at about 7:00 pm. She started feeling warm and then she started out in a rash all over her body. Her temperature was up to 103.1 degrees C. We'll know tomorrow if she has an infection after her blood cultures come back. The Resident put her on another antibiotic, Vancomycin. She's been on a different antibiotic, Fortaz since Wednesday when she had a temperature. So now she's on two antiobiotics. Once she gets a temperature we take things very seriously since infection can spread so fast in her body, they gave her tylenol to get the temperature down. I hope that getting out and running the halls didn't make her sick.

Her temperature went down to 100.0 degrees C by the time they started her 5th round of chemo at 10:30 pm. She's getting accustomed to a very late bedtime (and so am I). Sometime in the night she woke up and was very upset. She was just scratching her scalp and pulling her hair out and her forehead and nose area was very red (and still is). The doctor decided she developed Vancomycin Red Man Syndrome which is an allergic reaction to the drug. So now she's on Benadryl for the allergic reaction. She's still going to be on Vancomycin for infection, but from now on we'll give her Benadryl before the Vancomycin. I have a whole white board covered in the names of the drugs that are being given to my sweet baby.

There are some things that are just not fun that go along with the chemotherapy. She is always hooked up to an IV that pushes fluid through her body so that the chemo doesn't stay in her system too long. Because of the fluid she pees a lot and we are on a strict every 2 hour diaper changing schedule. If I go too long then she leaks on whatever she's sitting on. If she's sitting on me, then I have to take my clothes off and seal them in a plastic bag. I have to wash my clothes 2 times in warm water. We have to change her bed so many times. When we change her we have to wear plastic gloves and there are so many precautions we take.

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Sunday, June 6, 2010

A visitor

Saturday Erin got a big surprise when one of her babysitters and our good backyard fence friends came to visit. The door opened and Erin yelled "Haley!" She was so excited to see her friend. It was special for Erin to have a visit from someone that she has spent so much time with. Thank you Haley and Jamie for stopping by. John was with Erin at the time and I was in Logan. When I called at night, Erin told me all about Haley visiting her and bringing her a bunny. Sweet moments.

Acute Myeloid Leukemia: Our best day so far!

acute myeloid leukemia
Erin is really very happy today, she must be feeling better even though it stinks to have Acute Myeloid Leukemia M7. She has had her 4th day of chemotherapy for round #1. Only 6 more days left. I'm amazed at how well she is doing, the fasting and prayers are helping her be comfortable and happy through this painful process. Ever since we've been here there has been a warm peaceful feeling our room and I know that your prayers and fasting have helped us feel an overwhelming sense of our Heavenly Father's love.
Erin and I have had a fun time together today. I will be with her until Tuesday evening. John is at home with our other children trying to make life normal for them. Erin and I have been dressing each other up in a necklace, done puzzles, and then we both danced together. She played for 2 hours in the toy nook. This time it didn't take much coaxing to get her to wear her necklace/mask to go out to play. She made me about 50 cups of pretend hot chocolate at the kitchen set. To her satisfaction, I drank every one of her cups. Our friend Cris (from our Singles ward days) came to visit and he had hot chocolate too. Then Cris and Erin played with a huge ball. They threw it and kicked it up and down the halls of the entire unit. I chased after her with the IV rolling thingy (I wonder what it's official name is). It's hard work keeping an IV line tied up to a 2 year old while she's running after a ball and not having it pull her tubing from her chest. From the looks of her running up and down the halls you wouldn't even have suspected that she was on chemotherapy. Everyone has fallen in love with Erin. We had a few nurses just pop their heads into our room to see the cutest little girl in the hospital.
Erin's body is taking things pretty good. She's had high blood pressure all day, but tonight we took the blood pressure while she was sleeping and it was back to normal. It's very difficult to get her to stay still while the blood pressure cuff tightens. She has also developed a mild rash all over her body. It's nothing alarming and it's not bothering her, so that is good.
From here on out we'll really be worrying about her ANC (Absolute Neutrophil Count). The ANC is the fighter white cells. Today her count was 600. When it reaches 500 then she'll be very susceptible to catching anything in the air. At the end of the chemo, she'll be down to an ANC count of zero (I believe -I will have to clarify that statement with the stack of books, binders and brochures on my shelf here) The chemotherapy is doing its job of killing off the cancer cells so far. I'm not sure when, but the doctors will do another bone marrow biopsy. It will tell us how many cancer cells are left in her blood.
You'd think that we'd get bored sitting here all day, but really things are so busy. We have the nursers, doctors, social workers, and other staff visiting all the time, and we have had so many friends and family visit. It's wonderful! I feel like I'm in AML 101. I am trying so hard to soak in all the new terms and information. Sometimes it all blurs together. We've been taking notes and we have all her medications and information about them written on a big white board in our room. It's like going back to college again, only this time the information is life saving.
P.S. if you want to check up on accurate information about AML (Acute Myeloid Leukemia) http://www.cancer.org/ is an excellent source.

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Saturday, June 5, 2010

Acute Myeloid Leukemia: Technology & The World

It's amazing how in an instant we have been able to connect with friends (some we haven't talked with for over 10 years) from all over the world while Erin's been battling her Acute Myeloid Leukemia M7. What a wonderful world we live where we are so blessed to have the technology to instantly send out a million emails, texts, & messages to friends so that they can join us in a Sunday fast for Erin.

We appreciate all of your prayers and fasting this Sabbath day! The Lord works in miraculous ways and we are already feeling the sweet Spirit from your prayers and fasting. Thank you.

Right now we know that we have friends and family fasting on the Sabbath from Sweden (my sister on a mission), Phillipians, Armenia, New Zealand, Australia, England, Maine, New York, Virginia, California, Idaho, Nevada, Oregon, Texas, New Jersey, Samoa, Massachusetts, and of course Utah. Let me know if I missed any.

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Acute Myeloid Leukemia: Another day of chemo.

Today was another day of chemo to kill her Acute Myeloid Leukemia M7, yet it's been Erin's best day so far. Have you seen the movie "What About Bob?" I love to liken things to the "baby steps" philosophy that is used in that movie. We are taking "baby steps" through this new life with cancer. Our "baby step" today was to get Erin up and walking. She's been in a lot of pain from the spinal tap and bone marrow biopsy that she had on Wednesday. After breakfast (she ate one bite of scrambled eggs) I gave her some markers and a coloring book. She rolled over off her back and sat on her knees and colored. This was a first because pretty much since surgery on Wednesday she's been laying in bed.

I asked her if she'd like to visit the toy nook in the ICU (Immunocompromised Unit) where we are staying. She was excited about playing with toys. While she was still on the bed I opened the door to her room and I showed her a little tykes basketball hoop that was just outside our door. She yelled "soccer balls!" (to her any ball is called a soccer ball) and said she wanted to go out and play. We told her that we wanted to take her out to play but that she had to wear a mask over her mouth and nose to go out and play.

Masks are going to be a big part of our lives from now on since she can get sick so easily. Remember, Erin is almost two years old. Two year olds don't think rationally. She doesn't understand why she needs to wear a mask. In fact, she hates the masks. So, the mom in me got really creative.

Baby steps:
"Erin here's your mask, let's put it on."

Defiant "no!"

"Hey look Erin, Mommy gets to wear a mask too (nurse finds mom a mask)".

"No!"

"Hey look, daddy gets a mask too." (Nurse brings dad a mask. Then I try to force Erin's mask onto her head.

This is a fruitless effort. New tactic. "Oh Erin, daddy looks funny in his mask. What does he look like?" She give us a confused look. I say, "I think he looks like monkey." I search for a marker and I draw a monkey on daddy's face mask. (he he, now he looks really silly)

Daddy says, "I think mommy needs a monkey on her mask too." Dad draws a monkey face on mommy's mask. (I think my monkey was better than dad's but don't tell him I said that.)

She starts to think we are funny and we give her a mask to just hold in her hand, but she won't let us draw a monkey on her mask.

"Oh Erin, your snugly bear needs a mask too if he wants to go out and play." (She thinks this is pretty cool and is starting to warm up to us, but she still won't put the mask on)

I grab a plastic necklace and give it to her. "Hey Erin, here's a necklace do you want to wear it?" "Sure" she says.

"Oh here's another necklace!" I show her the mask in her hands. (the nurses decide that if she wears it as a necklace then that is good enough for now)

Erin puts her own mask over her head. This takes several minutes while we wait for her to do it by herself as she says, "I wanna try." She doesn't want us to help her put it on. Hooray! She gets the mask on. Oh, but wait. She doesn't like it. Off it comes.

I try another new angle. I take her to the door and let her look out her window into the hall. I point to the toys and say, "Do you want to play with those toys?" She nods "Yes". I reply, "well then, you have to wear your necklace (new name for mask)." "Okay!" She says.

Necklace/mask goes on and out the door we go. Freedom. This is a new world for her!

We had so much fun getting her to walk (she teeters still from the pain of the surgery) and stand and play. We met 2 other little girls at the toy nook. One (from Idaho) was recovering from a kidney transplant and the other one (from Montana) had another form of cancer. These girls played around the table and it was fun for us parents to chat. It's so comforting talking to other parents in a similar situation.

Well, we feel triumphal having gotten Erin up and out of her room AND we got her to wear the mask. I mean, necklace. :)

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Acute Myeloid Leukemia: Things are busy

Wow! I cannot believe how much support we are receiving while Erin is fighting against her Acute Myeloid Leukemia. I am so thankful for all of you praying for us and for Erin. Every time I chek my texts, my voicemail, my answering machine, open my email or facebook I find a gazillion messages from our family, friends, and even friends of friends offering their support and letting us know that they are praying for us. I know that God will support us in our trials, in our troubles, and our afflictions (Alma 36:3)

Today I had to leave Erin and go to Logan for my last cello recital. I have spent the last few years learning concertos, sonatas, and other various works for violin, cello, bass, viola, tuba, trombone, and flute. I have done countless performances through it all. I wonder if someday I will learn to play the cello though, I am so drawn to it's beautiful deep sound and I have spent almost this entire last year solely doing cello music.

I have enjoyed accompanying so many fine musicians. I am thankful for their teachers: Anne Francis, Dr. James McWhorter, Julie Huppi, Dr. Mark Emile, Dr. Todd Fallis, Will Fedkenheuer, Rebecca Fuller, and Loralyn Staples for letting me create beautiful music with their students. I would love to list all of the talented musicians that I have played for, but I fear there would not be room enough here, but each of them have a special place in my heart. There are a few though that I have accompanied for 5 years: Sweet Holly Morgan who is almost my sister was one of my first and last cellists to accompany and a big thank you Paul Kang for making me learn almost every cello concerto I know in a night's notice. There are many others that I have spent multiple years working with: Janice and Justin Kim, Koning and Konlin Shen, Corbin Evans, the cello chickens at USU, and so many others that have touched my life.

I have learned many things from this amazing opportunity. It gave me such pleasure sitting behind each musician as I helped them create a beautiful musical experience. For now, I am going to put my accompanying skills on the shelf. I will be putting a special part of me away for awhile and I hope that someday it can come out and play again!

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Friday, June 4, 2010

Acute Myeloid Leukemia: Blood donations

Erin receives blood transfussions daily to help keep her blood count up while she is fighting Acute Myeloid Leukemia M7. She also receives platelets before surgeries. Did you know that it takes 6 platelet donations for ONE of her platelet transfussions? It amazes me how much sacrifice is put into helping our sweet daughter overcome her cancer. Many of you have offered to donate blood in Erin't behalf. Our hearts are so touched that you are so thoughtful! If you would like to donate blood to the American Red Cross we greatly appreciate it. Although you would not be giving blood directly to Erin, you would be helping to save the lives of others.

We are awaiting the results of her bone marrow biopsy. In 2 weeks we will find out if she will need a bone marrow transplant. Yesterday we had Cecily & Caleb here having their blood drawn to see if they will be a perfect match. It wasn't too much work getting the kids to the outpatient clinic to have the blood drawn, but I'm sure that people all over the entire hospital could hear Caleb scream as they drew his blood and then for a few minutes after they were done. Wow, that kid has an amazing set of lungs! Maybe we should get him into opera singing.

In one week we will find out if Cecily or Caleb are a perfect match for Erin. If they are not a perfect match then the doctors go to a pool of bone marrow donors already in their system. We have been amazed with how many of you have offered to be tested to donate the bone marrow if it is needed. However, becuase the task of testing the blood to see if it is a match is so long and tedius the doctors do not want to test anyone else other than Cecily or Caleb. I guess siblings are usually the closest match. Thank you for your offers!

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Snuggly pillow and quilts

Just some cute pictures of some of the things people have donated to the hospital that have made our stay more comfortable.

The pocket pillow was made by a young girl who donated it to the hospital. The social workers on our floor gave it to us as a welcoming present. There were several little presents in the pockets, chapstick, crayons, coloring book, gum, etc.

The blankets I have pictured here are today's set of blankets we get to use. The blankets have been donated to the hospital by various people and groups. It's very sweet that our little Erin gets to snuggle up to them each day. It makes me think of the many Young Women and Relief Society activities where we tied quilts. I'm thankful for everyone who has put time into making a quilt and donating it. We have been greatly blessed by this sweet service. Thank you!



Acute Myeloid Leukemia: Lunch Time

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Erin is doing really well this morning. She has now completed her first day of Chemotherapy for her Acute Myeloid Leukemia. She is watching Dora The Explorer and eating mac and cheese. We are glad she is in the mood to eat since she wouldn't eat breakfast, probably due to the nausea. The chemo will change her taste for food and she may even loose her sense of taste. These things will be temporary, but we hope that she continues to eat healthily.

John and I have been rotating sleeping here at the hospital with Erin and in Farmington with my Uncle & Aunt, Bert & Linda Margetts. They have been so gracious to open their home to us, even giving us the code to get into the house at any time fo the day/night. We are able to sleep nicely in their basement in my Grandpa's King size bed. It's also been wonderful getting up in the morning and finding a sack lunch prepared for both of us. I have also been blessed to be able to practice a few hours on my Aunt's beautiful grand piano. The first time I sat to practice I felt a little guilty, that maybe I should be at the hospital with Erin. But touching the keys and moving my fingers in beautiful melodies has helped calm my soul and helped me know that it is also important to take care of myself as we go through this.

Erin has slept most of the day and seems a bit worn out, but she is her perky self when she's awake. John and I gave her a sponge bath and washed her hair. She just relaxed so much as we poured warm water over her head.

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

Thursday, June 3, 2010

Acute Myeloid Leukemia: Pictures From Family Visits!

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Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"