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.

Saturday, July 31, 2010

Friday, July 30, 2010

Another Good Day

Little Air Bear had a great night and has also had a great day today. Her ANC is still 200, but her platelet count is going up instead of down. We are so excited she is making her own platelets so she won't be needing anymore transfusions this hospital stay. Her other blood counts have all moved up too! Thank you for your prayers.

Dr. Verma and Dr. Barnett said that they'll do a chest x-ray on Monday and if it looks good then she'll be allowed to go home. This is earlier than we expected and it is such a blessing! I can't believe that with this more difficult hospital stay she would actually be coming home earlier than last time.

I can't wait to see her run free in the grass in our backyard. I can't wait to see her untethered from her IV poll. I am so excited to see her sleep in her own bed in her own room surrounded by all the toys and books that she loves. Seeing her bound to her room, unable to enjoy a normal life makes me think of how we unknowingly give up some of our freedom and bind ourselves to unnecessary things in the world. It could be work, money, friends, the computer, habits, our homes, or hobbies to name a few things. All of these things in life can be good, but they become harmful when they take over our normal lives and we become bound to them. I have gained a new appreciation for life and how short it is. The world makes us feel like we need to do this and have that, but do we really?

Blog Changes

There have been a few changes to the Little Air Bear blog. I have changed some settings so that anonymous followers, and readers without an account, can comment on the blog. Since this blog is not private please do not share or copy the pictures or text on the internet. Please still feel free to share links to this blog with your friends and family. Inappropriate comments will be deleted. Thank you for checking in on us today!

Thursday, July 29, 2010

Improvement

I just chatted with John on the phone and got the update for the day. He was so excited to tell me that she ate 3 pieces of pizza tonight! He said that she is getting back to her old self again. She was happy and they had a fun day together. She hasn't had a fever since Wednesday.

There was only one mishap today. Erin fell asleep on John's lap and when she woke up John stood up and her repaired tubing line just happened to be under his foot. He stepped on it and it broke off in the place where it had been repaired. Remember, her central line is a tube that runs straight to her heart, so having it exposed or broken can be fatal. He pushed the nurse button, set her on the bed and tried to get his central line clamp off his keys. The first few days after Erin was diagnosed in June our nurse gave us some clamps that we carry everywhere with us just in case her line ever breaks. The nurse got in the room and they clamped off her line. There was only one drop of blood that had escaped her line. About an hour later they had the IV Team come up and they repaired her line with extreme skill. I am actually grateful that we had the IV Team repair her line, nothing bad about our nurse who had previously done it, but with something so fragile to her health I much prefer to have an expert do the work.

Erin has started taking Caspofungin Acetate which is another anti-fungal just in case the nodules on her lungs are from a fungal infection. The doctors have not ruled out the possibility of her having a fungal infection. They want to do another CT Scan on Tuesday to see if her lungs have changed at all. From the sound of it though, she seems to be feeling much better today than she has all week. I'm sure that it is because of your prayers for her! Thank you so much for your prayers!

P.S. We have been cataloguing all of the medications Little Air Bear has received in the last two months, so far I have 19 different medications. However, I still need to find out what they gave her during the CT Scan to calm her down. That would be 3 more to add to the list.

Two Possible Ideas.

Erin's ANC is up to 200. I am so thankful that it's rising so soon (we didn't expect this for another 8 or 9 days) because that means that her body can fight off it's infection. The doctors have said that the parents are the best initial source for what their child might have if they get sick. John and I have done some researching and asked a lot of questions. With the doctors help we've narrowed her illness to two possible ideas.

(1) She has tested positive for Rhinovirus. The Rhinovirus is basically a common cold virus and it lives in our noses. It can live for months there and we can show no signs of infection, however since Erin has no immune system she isn't able to fight off infections. So, she has a cold. The fevers are likely her body's defense system. It can also be accompanied by sore throat and that would explain why she isn't eating.

(2) She likely also has Mucositis which is a very common side effect from Chemotherapy. The lining of her mouth, throat, and digestive track can become inflamed and ulcerated. This would explain the diarrhea and why she isn't eating. It can be very painful so maybe that's why she is so much happier when she is taking oxycodone. She has an order for a medicine drink that sort of numbs her digestive track so that it isn't so painful and she'll be taking that today. Only time and an immune system can heal the Mucositis, so I am so thankful and feel so blessed that her ANC has starting rising so quickly.

I would like to add a disclaimer to all my blog posts. I am not a doctor and most of what I learn is from "hopefully" reliable sources on the Internet and information that the staff at Primary Children's gives to us. I'm sure there will and have been times where my medical information is not entirely correct, please forgive me for that.

Last night John and Erin both slept very well. She slept through most of the day yesterday too so I was surprised to find out that she actually slept at night as well. It is so good that her body is getting time to rest and heal. Thank you so much for all the prayers and faith! Last night when Cecily was saying our dinner prayer she told me she was going to pray for Erin and for our neighbor who has a sore throat. She then asked me if there were any other people that were sick that she could pray for. I couldn't think of anyone off hand so I told her to pray for anyone else in the world that might be sick. I continue to marvel at how sweet children are and how we should be more like them.

Wednesday, July 28, 2010

More Results

It is quite shocking today to find that Erin's ANC has moved from zero to 100. Her white blood cell count is really growing and now the doctors are wondering if maybe the nodules on her lungs and the fevers are a result of her body producing white blood cells again. It's possible that her body is sort of in shock from producing white blood cells again after killing them off with the chemotherapy.

Dr. Verma seemed surprised that her ANC came up and they think that maybe it will go back down again as the counts sometimes fluctuate. So, we aren't holding our breath that we'll be taking her home soon, and I'm sure they won't let us bring her home with a fever. Last night they put a tube up her nose into her sinuses and took some samples to check for a virus, she just LOVED that procedure. The first lab results came back today from her nose/sinus samples and they were negative and showed no signs of a virus lurking her body.

Because of her diarrhea (since having this blog I have learned to correctly spell DIARRHEA) we now have an Infectious Disease Doctor (ID Doctor) working with us. There is a sign on her door warning those who enter that they have to wash their hands with soap (no hand sanitizer) after contact with Erin. Her poop cultures from yesterday have come back negative. The ID Doctor asked a load of questions like "is her diarrhea super stinky?" How do you answer that? All poop stinks. Maybe I've never smelled "super stinky" poop. Maybe all the poopy diapers I've changed over the last 5 years have only been "sorta stinky" poop?! The ID Doctor wants us to make sure that those in contact with Erin are currently immunized. Particularly the DTaP (Diphtheria Tetanus and Pertussis) Vaccine. She said that you or I can carry Pertussis (also known as whooping cough) and show no signs of if, but we can pass it on to our immunocompromised Little Air Bear. Being up to date on your vaccines means having had the shots within the last 10 years.

The possibilities of the fungal infection are still up on the list. If things don't improve then they'll put a tube down her throat and get a sample of one of the nodules in her lungs too see what's going on there. I suggested to Dr. Verma that maybe we just need to wash our feet more often. I wonder if toe jam could make her sick?

Basically, the team of doctors working with us are covering all bases for current and possible future infections. I wonder how cautious we really need to be? It's all so unnatural having to worry about so many possibilities. Let's just continue to pray for a speedy ANC recovery.

John said that they didn't sleep very well last night, but she took a 2 to 2 1/2 hour nap this afternoon. She's still really cranky, but that could just be that she's just fed up with being confined to her room.

Tuesday, July 27, 2010

CT Scan Results

The CT Scan results came back and Dr. Verma and Dr. Barnett came in to talk with us. Her scans showed nodules on her lungs. The nodules are a result of two possibilities (1) a Fungal Infection or (2) A Viral Infection. She is going on another anti-fungal medication just to be cautious. They are going to do a nose swab because her nose is running and see if they can target the exact virus that could be troubling her.

In about 8-10 days her ANC should start rising and then her white blood cells can help her fight off this infection. Thank you so much for your concern for us and for all of your prayers in our behalf.

Pictures

Some of these are old pictures.
This is a cute one of her running and laughing.
You can also see what her central line looks like.

Dancing and twirling.

Dancing in my slippers.

Beautiful girl.


Playing with blocks.
Playing with princesses.

Everyone comes to visit.

Playing with the camera.

Dressing up the dollies.


More Procedures.

Erin's repaired central line is working. During the night the nurse came in to check on it and I was snuggling Erin in her bed. She tried the line and it didn't work, I looked at it and realized that the line was still clamped shut. When they put the new line on they also put on a new clamp, so her line has 2 clamps (it should only have one, we need to cut one of them off). All the time she was checking the line while only one clamp was open, so the tPA was only in the line and wasn't even to the point where clots could be. Basically, her line worked fine all the time, it was just doubly clamped and the nurse didn't know it.

This morning Erin woke up fine, but by 9:00 am her fever had returned to 103 degrees. She is also having diarrhea. Dr. Verma and Dr. Barnett just came in and she's scheduled for a CT scan to see if there are any signs of infection so that they can target it. She is also being checked for an infection in her gut due to the diarrhea. It is also likely she could have some fungal infection. There are endless possibilities when her immune fighting white blood cells (ANC) are zero. Her own normal bacteria in her stomach could be giving her an infection. Hopefully we'll have some answers this evening. She's pretty happy right now, she's sitting on my lap playing with her wooden blocks and watching Cinderella.

Monday, July 26, 2010

Repairing the Line

Our nurse repaired her central line. It was quite remarkable how she did it. She clamped her line above the nick, then she cut off the line and just glued another one to it, like gluing two open ended hoses together, only she did it with skill and with a lot of sterilized equipment. But, one procedure was left out. Through some confusion, she ended up putting the Heprin (anti-clotting medication) in the wrong line. So, the repaired line did not get the Heprin before it was repaired. Our night nurse just checked her repaired line and there are blood clots in it blocking the line. She is going to be given tPA (Tissue Plasminogen Activator) within the hour which is basically a clot buster that will dissolve the clots and open up her line.

Erin's fever has just about gone and before she went to sleep it was 98.8. She was so much happier this evening, I even got her to laugh (instead of complain) when I tickled her. She sat for about an hour playing with the contents in my purse while I chatted on the phone with my Mom. She has stopped thrashing and crying and she has been sleeping soundly for the past hour. I am doing the laundry and I just finished reading "The Golden Spiral" by Lisa Mangum. It's the second book in her 3 book series. The first book is called "The Hourglass Door." They're sort of Twilight-type books, only better written.

Ride to Logan

We are looking for a ride from SLC to Logan on either of these dates:

Tuesday, July 27th in the late afternoon for Jill and the kids.

or

Friday, July 30th after 5:00 pm for John.

If you happen to be going from SLC to Logan on either of those dates and you have room in your car for us would you please contact us. Thank you!

So Many Things Can Happen In Just One Day

Erin slept over a 12 hour period of time last night and only woke briefly four times. She was pretty easy to get back to sleep. I was so thankful that she got a good rest. We had fabulous nurse Suzanna during the night, she was in and out like a mouse. This morning Erin's temperature was down to 100 but now it's back up to 103. She is pretty upset and grumpy. She doesn't eat anything and she is always yelling at us and saying, "no, stop it." She watches LeapFrog's "Letter Factory" over and over, it's really the only thing she enjoys right now besides Dora the Explorer.

We changed her dressing on her line today, it wasn't due to be changed until Friday, but the bandage was peeling off dangerously close to her tubing. Yesterday's nurse had pinned her line between her clothes to keep it from pulling the tape off. I went to remove the pin and we found that the tubing in her line was caught in the head of the pin. We used some pliers to break off the pin, but it had slightly punctured her line. There is a little nick in the line, we can't tell if it is broken all the way through. There isn't anything oozing out of the nick, but the nurses are going to repair her line anyway just to be safe. In the beginning we prepared ourselves for the fact that at some point her line would have to be repaired so now is that time.

We have had Doctor Verma, the Attending Physician, here and we love her. She is such a personable doctor. She really loves Erin and they seem to get along well. Dr. Verma was with us the day we checked into Primary Children's and I'm thankful to have such a competent doctor working with us. We also had Dr. Barnett, a Fellow, here and we love him too. He is so much fun, he always has a huge smile and lots of jokes to share with us. The two doctors had a look at her throat and mouth, but we can't seem to find anything that shows signs of infection. Her ANC is still zero and her blood cultures are still showing no signs of infection.

She is still on her daily doses of 3 antibiotics (Vancomycin, Gentamicin, and Meropenem) and Tylenol. We're giving her the Oxycodone on an as needed basis. We keep filling this sweet baby with medications. I haven't even taken the time to check side-effects. Oh well, the doctors think this is the way to help her out. They told me that this is standard procedure for her situation. It's frustrating not knowing what is causing her fevers, but it's also comforting knowing that she is healthy according to her cultures. We have wonderful nurse Rachel today, we've had her before and she is so kind and gentle. She and one of the head nurses are going to repair her line shortly. They asked if it would be okay if others could come and watch, I hope Erin gives them a good show. She'll probably be screaming through it all, even though they won't actually be touching her, just her line.

We had the Music Therapist here today and they are going to be coming 2-3 times a week. Erin really enjoyed the activities so much. We miss all the music we had going on at our home. Erin and the other kids were always playing on the piano or playing CD's and dancing and doing other musical activities. It's nice that we can have a bit of that here too. It's starting to rain here, it's so beautiful outside. I love rainy days!

Sunday, July 25, 2010

There Are Many Who Are Worse Off

I have met many family members here in ICS (Immunocompromised Unit). Let me share some of their stories. . .

We met a darling 20 month old girl in the toy nook awhile back, she and Erin worked on sharing toys. Her mother told me that her daughter had been diagnosed at 3 months old with a rare genetic blood disorder. Her baby has been in a hospital almost her entire life. She has done 2 different sets of chemotherapy and a bone marrow transplant. They were back in ICS because of complications with the transplant. We talked so much about how her daughter hasn't had a normal life, how she has spent almost all of her life in a hospital, she doesn't have siblings and she has had very little contact with other children. Talking to this mother made me so thankful that Erin has been able to live almost 2 years of her life enjoying life as a normal 2 year old should.

Just the other day I met a couple who had an 11 year old daughter who has a tumor the size of a baseball in her knee, and some small tumors in her lungs. They said that she complained of pain in her knee, but they sent her to school anyway. After school her friends had to carry her off the bus because she couldn't walk, they took her to the ER and found the tumor in an x-ray. They told me that since she'd been on chemo that the tumors in her lungs had shrunk considerably. They were such happy positive people and they were very friendly. I was in awe by their positive example.

I met a mother who delivered her baby at 27 weeks old. She was rushed to the NICU where they found out that her liver didn't work. Her baby is now 11 months old and just recuperating from a liver transplant. This little angel has lived her entire life in a hospital.

I met a father who has a little boy here. For two months they thought that he had Mono until they took him to the ER because he was just so sick. The doctors wanted to send them back home with a prescription for Tylenol, but the father insisted they do a CAT scan. They went ahead and honored his request. They found a tumor between the little boys eyes that also goes back into his brain. He was life flighted from Montana (their home) to Primary Children's. They have been here since May and have only been home for 5 days.

As I talk to the parents here I have come to realize that we really have it pretty easy compared to the trials others around us are facing. Sometimes I look at someone and I think, "I could never have that trial." And sometimes I look at my life and I think, "this trial isn't so bad." We are given what we can each individually handle and our trials are uniquely our own. We cannot pass them on to someone else and we cannot pretend they are there. We have too look them straight in the face and conquer them with whatever it may take to conquer them.

Fevers and a Little Together Time.

After I left the hospital on Friday John and I took the kids camping at a family reunion. My mom offered to stay with Erin and let us have some family time together. It was so relaxing and fun! We feel ready to face new challenges.

Friday night was a particularly bad night for Erin. She started into a fever that was up to 103 degrees. She hardly slept a wink that night. She was given Oxycodone for pain, Tylenol to reduce the fever, Vancomycin to treat the possible infection, Meropenem to treat a possible bacterial infection, and Gentamicin to treat more severe infections. Thankfully her blood cultures show no signs of infectious growth so far. My mom said that they both slept around 5 hours throughout Saturday and that they both slept pretty well on Saturday night.

The fevers have burned up her platelets and red blood cells so today she had another red blood cell transfusion and tomorrow she'll be getting platelets. She hasn't eaten much other than a few M&M's and bread on Saturday and today she had some bites of cheese and a few bites of bread in the evening.

John and I showed up around 5:30 pm and Erin was really excited to see us. She kept pointing to each of us and saying our names. She hasn't seen her siblings for 2 weeks. Despite her high fever she played blocks, puzzles, and princesses with her brother and sister. John gave her a beautiful Priesthood blessing to help her sleep so that her body can heal. She fell asleep in my arms while I rocked her, the nurse took her vitals, drew some blood samples from her line to send to the lab, we gave her some of her meds, and took her temp, it was 102.9. I am still cooking from holding her, I can't believe how hot her little body is.

I have felt so many emotions today, it's been very draining. I felt such joy waking up this morning to the smell of fresh mountain air. When we told the kids we were going home they asked when the next camping trip is scheduled for. We love camping, it is so wonderful to be away from the busy-ness of the world.

When I talked to my mom this morning I felt sadness and a little guilt that I had such a fun weekend, while my mom and my baby were struggling in the hospital. I am over the guilt, it is important for me to have time away from the non-stop treatments at the hospital. The sadness has stuck with me, because I feel sad that my baby is so sick and that she is going through so much.

Today I felt a little bitterness. As we drove (once again) through the canyon and down the freeway I just really felt the monotony of this struggle and how long and pressing it has been on us. I felt a little bitter thinking that my daughter is confined to such a small space and that her normal family life has been taken away from her. I don't like feeling bitter, but for a few minutes I allowed my mind to wallow in a little grief. It is good to grieve, it helps me see what my blessings are.

Lastly, I felt peace and wholeness when our little family was here in Erin's hospital room. Family is so healing. Being together is healing. Life is too short to spend being away from each other. There are many things in this world that can distract us and can take us away from our families. We can be happy with less in our lives if we can have our family together.

Friday, July 23, 2010

Pioneer Day Weekend

I cannot imagine how difficult a journey it must have been for those saints who traveled their way across this nation in search of refuge in the Salt Lake Valley so many years ago. They're unshakable faith, their inner strength, and their courage to continue is such an example to us all. They are an example to me.

Erin is having a difficult time. There are so many possibilities of what is bothering her, but we aren't sure what it is. She is struggling with sleep, eating, and her overall attitude to everything. I worked things out with her doctor so that tonight the nurses will not be waking her up to check her vital signs and she won't be hooked up to fluids so they should't have to change her diaper in the night. Hopefully she'll be able to sleep really soundly through the night. She's been such a sleep deprived two year old I hope that she'll be her old happy self again soon. Her ANC is still zero.

Thursday, July 22, 2010

Two Ships Passing in the Night.

Like two ships passing in the night, John and I are two parents passing on the freeway. Yesterday we did our hospital shift swap during Erin's nap time. I left the house as John was reading stories to Erin and then he left the hospital once she was asleep. We called each other as we traveled down the freeway in our respective directions.

As we neared a common ground on the freeway we began explaining what cars and scenery were around us. Eventually we met, as two ships passing in the night. For a brief fleeting second our eyes met and we waved as our cars passed along the freeway. It was a short lived, thrilling moment.

"Ships that pass in the night, and speak each other in passing,
only a signal shown, and a distant voice in the darkness;
So on the ocean of life, we pass and speak one another,
only a look and a voice, then darkness again and a silence."
Henry Wadsworth Longfellow

There is no snooze button on toddler

"Life is something that happens when you can't get to sleep."
Fran Lebowitz

I have sleep on my mind. It's noon and we (okay, maybe I mean "I") already want to crash for the night. For the past two days Erin has been crying during her naps and during the night. She screams "no" in her sleep and often whimpers or cries out and kicks, then she immediately goes back to sleep. She does this about every 20 minutes throughout the night. Last night I went out to talk to the nurse about it and we ended up giving her some anti-nausea medication that has a little sedative in it which did help somewhat.

I can't seem to pinpoint why she is having trouble sleeping. It could be that she is nauseous or in pain. I am starting to wonder though if it's a psychological issue. I think that she is feeling trapped here in the hospital, we haven't been together as a family for over a week, and she misses her brother and sister. I think she is getting restless being confined to her hospital room and even though she is pretty used to all the daily hospital procedures she really doesn't enjoy them. So, maybe it's all just bad dreams she's having through the night. Maybe this is her way of coping with her situation, since she is usually pretty happy throughout the day.

When breakfast came this morning she was ready to dig in, but after taking one bite of each thing on her tray she just broke down. I quickly got the nurse in here and we got some Zofran (anti-nausea) in her system and then she was able to drink an entire carton of milk a half hour later. I think she's dealing with some pretty strong nausea.

She's really good despite how she is feeling. Right now she's singing and doing doctor-type things to her baby. She's an Oncolgist in the making. Her ANC is zero, but that is what we expect. Her other counts look pretty good thanks to her blood transfusion and the platelets.

Wednesday, July 21, 2010

There she is.

Please enjoy this very short video of pure pleasure.

She says, "There she is!"

Then, when she turns around she sort of growls, "Rawr, you scared me."

It's a Roller Coaster!

Today Erin's day started off a little bit rocky. The nurses told us that we can give Erin Zofran (anti nausea medication) on an "as needed" basis, so last night we opted to not give Erin her dose of Zofran. This morning she ate breakfast and then threw it up. So, now she's back on the Zofran. It's hard just watching for signs of nausea, it would obviously be easier if Erin could say, "Hey, I'm going toss my cookies, can you get me to the toilet?"

After she got cleaned up, she ate another breakfast. Don't you think that sometimes it would be nice to be a kid again? As adults we whine and shy away from food when we are sick. Kids, they throw up (often without warning) and then they just get over it and start eating again. Maybe it's just part of growing old, like how lately it's gotten hard for me to ride a roller coaster without getting nauseous. I used to be able to go on the whirling-upside-downy rides over and over again without an inkling of nausea.

Erin and John had a splendid day together watching LeapFrog's Letter Factory 5 times throughout the day. Learning those letter sounds is such an on the edge of your seat kind of learning, I'm sure John was just riveted! We gave Erin a little princess dress as a reward for finishing her second round of chemotherapy. She looks so beautiful in pink! It's nice to dress her up again. We like to keep her in hospital jammies while she's doing chemo because it's easier to get to her central line through the snaps on the jammies. She loves being all dolled up. I will post pictures of her modeling her new dress when I take my turn at the hospital tomorrow. Well I guess it's already tomorrow, I've been up late sorting out paperwork.

Erin received platelets today (did you know it costly $1192.50 for a bag of platelets?). I want to thank Aunt Annie for all her many hours spent donating platelets as a student at BYU and then also working as a phlebotomist at the Plasma Center. And a big THANK YOU to all of you who have donated platelets too!

Erin's ANC is zero, it will be zero for an estimated 2 1/2 weeks. Lots of hand washing!

Monday, July 19, 2010

Monday

Today Erin's ANC has hit ZERO. So from here on out we start with being ultra cautious again. If you are sick or if you are around someone sick we ask that you please keep your sickness to yourself and not share it with us. Erin had a transfusion today and seems to be really doing well. She enjoyed having her Aunt Emarie stay with her last night and John is on his way to Primary Children's today to take his shift with Erin. She had her last eye drops this morning and that just makes things so much easier. The eye drops are just an over-the-counter saline drop (I'm sure the hospital charges more than WalMart though) that are necessary to keep her eyes moist while she is doing chemotherapy. One of her chemotherapy drugs can damage the eyes, and keeping the eyes moist will help that to not happen.

Sunday, July 18, 2010

A Day of Rest

Sundays are such special days. I am thankful that we are blessed with a day of rest, a day to renew our promises we have made with the Lord, and a day to be strengthened by others at church.

"And on the seventh day God ended his work which he had made; and he rested on the seventh day from all his work which he had made. And God blessed the seventh day, and sanctified it." (Genesis 2:2-3)

John, the kids (minus Erin) and I have enjoyed our weekend together in Logan. It was beautiful to attend church in our home ward. We are thankful for all the hugs and words of comfort and encouragement that we continually receive from our ward friends. After going to church today and talking to some family friends tonight my testimony was again strengthened about how important organized religion is. A belief in Jesus and his atonement is necessary. But where would we be in the world if we did not have the added support of fellow church members? This trial would be insurmountable if we were simply a little family living all to ourselves. We are so blessed to have the support and love from our wonderful church members, and for all the love and support we have received from all of our friends throughout the world.

Things at the hospital have been good for my Dad who was with Erin today. Her ANC is down to 100, and she's scheduled for a blood transfusion on Monday She is no longer allowed outside her room, so now we being our 2-3 weeks of in-room-entertainment. Let the fun begin!

If you'd like to send pictures, cards, or letters to Erin you can mail them to:

Erin H. Room 4418
Primary Children's Medical Center
100 Mario Capecchi Drive
Salt Lake City, Utah 84113

I know I have previously talked about how it feels to be home in our house without Erin. I guess I just feel like talking about it again tonight. It is probably one of the most difficult parts of this trial. Sometimes it is easier to be at the hospital in the middle of all of her treatments, it's like I'm helping her get better just by being there. Being at home is wonderful and very rejuvenating, but there is always a nagging feeling of a missing little spirit. I would guess that this is somewhat of what it feels like to loose a child. It is this feeling that makes it hard to be home and away from our little air bear.

I have only shed a few tears lately on how my heart aches to have our family together. There is a place in my heart where I feel so much comfort in knowing that our family will be together again. I know that the family is ordained of God. Marriage between man and woman is essential to His eternal plan. Children are entitled to birth within the bonds of matrimony, and to be reared by a father and a mother who honor marital vows with complete fidelity. Happiness in family life is most likely to be achieved when founded upon the teachings of the Lord Jesus Christ. (See The Family: A Proclamation to the World http://www.lds.org/library/display/0,4945,161-1-11-1,00.html)

We all have different trials in our lives, and I often think about how difficult this trial would be for me if I was single. I admire those single moms and dads out there who have overcome trials alone for whatever their reason. But I truly believe that Heavenly Father created families with a mom and a dad for a reason. If both father and mother truly live Christlike lives built upon the principles of faith, prayer, forgiveness, respect, love, compassion, work, and wholesome recreational activities then they can have happiness in family life. There will always be bumps (big and small) along the way, but we can succeed as a family. If we are just a little less self-centered and just a bit more giving great things will happen.

Saturday, July 17, 2010

Done With Round #2!

This morning Erin had her last chemo for round #2. YAY!

Her ANC has been around 1800, but today it dropped to 500. Yesterday I asked the doctor why her ANC was so high even though she was almost done with the chemo. He explained that during the first round of chemo her bone marrow had 80-90% leukemia cells and they are less resilient and easier to kill off, so that is why her ANC was always low during the first round of chemo.

However, going through this second round, her bone marrow only had 2% leukemia and a lot more white blood cells. The chemo kills everything, good and bad, but the white blood cells are more resilient and harder to kill, that is why her ANC stayed so high for so long.

Tomorrow will be her last day that she'll be allowed to run the halls of ICS and play in the toy nook. Once her ANC drops below 500 it's too risky to have her roaming the halls, even with a mask over her nose and mouth. We have to be so careful that she doesn't get sick from anything in the air. I don't know how we'll keep her from wanting to go out and play, she has loved it so much. When she wants to go out and play she picks a hat and her sandals from her drawer and then she heads to the door and tell us it's time to go out and play. We will have to get really creative in keeping her entertained for another 3 weeks while she just sits in her room waiting for her counts to come up.

She's been more tired and cranky the last 2 days as her red blood cells and platelets are getting low. She's scheduled for a transfusion tomorrow.

My parents and my little sister Emarie have been so kind to take the weekend shift so that we could come home to our house and be sort of be normal again. Cecily was so thrilled to be home. She kept saying that she loved being home, but that she missed Erin too. She has repeated that over and over. It's nice to be home, but we feel the absence of our Little Air Bear.

Thursday, July 15, 2010

There was a Beautiful Sunset Last Night.

Little Air Bear is getting so used to the hospital and the people here. The nurses all want to work with her. In the morning, they ask each other who gets to take care of our Erin. She is so loved!

During the first round of chemo Erin pretty much hated the pressure cuff when taking her blood pressure. This time around though, she barely notices that they are putting it on her. She doesn't mind many things, except the eye drops. She still really hates the eye drops. They only have to give them to her while she is having chemo and then 2 days after. So we only have to endure eye drops for 6 more days.

She knows how to run the DVD player through the wii and how to use the remote control. She's almost better at it than I am. I'll have to get her to play one of the wii games - or maybe I'll play it myself and let her watch (right!).

Today I had a volunteer play with Erin while I went to workout at the Jewish Community Center. It's a strange life "working out" at a facility, I'm still not used to it. I have always thought that exercise should be free for everyone (they gave us free use of the facility while we are here). I can't complain though, because it feels pretty good when I'm done, but nothing replaces the way I feel when I'm running in the fresh air seeing the beauties of the world around me. I would go running outside, but we are surrounded by hills, so it's either uphill or downhill running and there are no sidewalks and it's all busy two lane roads. So to save my knees from the hills and to not be flattened by a car I will continue to "workout" in this cool place. They do have tons of classes I can take, but I just never know when I'll have a volunteer to watch Erin and I often have less than an hour that I can be away. In any case, I can't wait to be back home to run the streets of Logan, but for now, I am thankful that I have access to this amazing facility.

Last night, after I put Erin down for bed, I went for a walk around campus. I sat in the grass and watched the sunset and the twinking of lights in downtown Salt Lake City. Primary Children's is located on the East mountainside and we have an outstanding view of the valley. I thought about the beautiful world that God and Jesus created for us and how blessed we are to live here. I thought about how amazing life is and how grateful I am that I am alive and experiencing this life. I thought about how grateful I am that there are ups and downs in life so that we can appreciate what we have been blessed with. I thought about how people are out there in the world suffering and I wished that I could help them not suffer. I wish that I could help everyone understand just how beautiful the gospel of Jesus Christ is. It is imperative that we know why we are here and what our purpose is in this life. I am thankful that I know who I am.

Wednesday, July 14, 2010

Things are . . .

THINGS ARE SO BUSY, but yet they are not so busy. Is it possible that I can feel like time is flying yet it is barely moving along? You would think that I'd just be sitting here with nothing to do, yet it would seem that I can barely find time to do anything. Just when I sit down to read a book a nurse or a doctor comes in, or maybe Erin needs some entertainment, or a cleaning person comes in to disinfect our room or it's time to eat or . . . The only time I really have alone is when Erin is asleep. Thank goodness she is a good sleeper and that she takes a 2 hour nap each day.

THINGS ARE DIFFERENT when you live in a hospital. Today, as I was filling out a disability form for Erin, there was a question that asked about what activities she couldn't do as compared to a normal child her age. I answered that in the past 44 days, Erin has spent 35 of them confined to the Immunocompromised Unit of Primary Children's Medical Center. That is not a normal activity for a girl her age.

THINGS ARE REALLY WONDERFUL too. I am grateful that Erin is relatively well. Her ANC was 1800 today. That is practically normal range. Her platelets have dropped from 210 to 162 and her red blood counts are getting lower so she'll probably do some transfusions by next week. I am grateful that she hasn't had any major side effects to anything. There are so many less fortunate than we are. We aren't dealing with rashes, fevers, allergic reactions, or anything else.

THINGS ARE PEACEFUL. We feel so peaceful and happy despite what we are going through. You may ask, why are you so peaceful and why are you still smiling?

Spiritually Minded Is Life Eternal = SMILE.
2 Nephi 9:39
THINGS ARE ENJOYABLE. We do have a lot of fun. Erin and I laugh and giggle and tickle and kiss and hug. Our friend Cris (one of Erin's favorite visitors) can get Erin to the silliest state of all. He has trained her to jump when he says the words "hot dog." It really is quite hilarious. Erin shows off for all the nurses and almost everyone that comes in her room asks if they can take her home. She is such a cutie pie.

Tuesday, July 13, 2010

More Pictures

Playing in the toy nook.

Can't wait until she's 16.

Driving down the hallways.


Erin is doing remarkably well. Her ANC was up to 1700 yesterday. I can't believe it went up instead of down during the chemotherapy. I'm sure though, that it will drop down to zero soon enough. In the meantime, we took her out to play in the hallways and the toy nook. She loved it so much. She was all over the place running and playing. At 8:00 pm we wheeled her back into the room in the police car while she was screaming "no no" but it was getting time to put her to bed. The doctors are impressed with her blood counts, everything looks really good and she is so healthy right now. Technically she is in "remission" because she only has 2% leukemia left in her bone marrow. She had 80%-90% when she was originally admitted. Being under 5% means you are in remission, but she still has to do all the rounds of chemo so that the hopefully the leukemia won't return. The doctors said that 75% of the AML (Acute Myeloid Leukemia) kids are in remission after their first round of chemo, we are thankful to be part of that percentage.

Monday, July 12, 2010

Pictures

Taking care of her baby


A visit to Temple Squre during Erin's nap




Sunday, July 11, 2010

Ronald McDonald House

There are so many blessings that have come from us being able to stay at the Ronald McDonald House (RMH). We have our own room with 2 beds and a bathroom. There are a few family rooms on each floor of the "house", it's really more like an apartment building/hotel. There is a game room in the basement with toys and t.v.s, Foosball, ping pong, pool, etc.

Another great blessing to staying here is that we are so close to each other. It's almost like living together as a family again. We have a home base that isn't a hospital and we are only about 1 mile from Erin.

The kitchen is another great blessing as well. There are two huge fridges and freezers stocked full of food to eat. There are cupboards and closets full of canned goods, pasta, cereal, and so much more so we can prepare meals for ourselves. About 5-6 nights a week different groups come in and prepare a dinner for the people staying at the RMH. There are so many different people who are giving so much of their time to help families like us. The front desk staff and the shuttle staff are all volunteers. People donate items for the RMH, from books to toilet paper. It's truly amazing. It only costs us $15 a night to stay here. We have been able to save money in transportation, food, and lodging. One meal at Wendy's or Burger King would cost more than our daily stay at the RMH.

Some of you have said that you are interested in helping us out, but you don't know what you can do to help us. If you are able, we'd love for you to donate items to the Ronald McDonald House. Here is a link to the "wish list" page at the Ronald McDonald House where we are staying www.rmhslc.org/content/wish_list.

Round two, Day 3

Another day of chemo almost done! Only 5 more. Erin hardly seems fazed about it all. She is enjoying watching movies all day. Today we watched Cinderella 3, you should all watch it. It was so riveting. Tonight she played for almost an hour using her doctor set on her baby. It's amazing what her baby is able to withstand, scissors to the head, scalpel to the back, a few doses of air through a syringe, blood pressure cuff, and stickers all over her stomach to name a few of the techniques Erin uses. I'm sure that by December she'll be a pretty well trained doctor.

Saturday, July 10, 2010

Off to a great start

What a great day it has been! Erin and I slept surprising well last night, even though the nurses were in and out every 2 hours. She woke this morning happy as a lark and downed a very big breakfast. Much to my surprise she requested a banana to go with her breakfast. When breakfast arrived, the first thing she said, is "where's my banana?" Oops. I forgot to order it. Never fear, our CNA got us a banana in no time.

Speaking of the CNA, I should share something funny about her and Erin. While I was out this morning the CNA came into the hospital room to check Erin's vitals. She said that when she came into the room Erin said, "You're back again?" Our CNA Rachel was also our CNA a few times on our last round at the hospital. She has 2 girls that are 16 months apart and she really is such a fun person. Erin just loves her.

Erin and I had a fun morning and I traced her hand with markers on a piece of paper. She made me do it over and over. We are just going through notebook after notebook with that girl. It's so funny how she'll color almost an entire notebook in one sitting. She also colored the sheets and pillows too. Good thing it's washable marker.

She has done well for her first day on chemotherapy. She had a little diarrhea, but she doesn't seem nauseated.

I took Cecily and Caleb to Hogle Zoo this evening. 5:30 pm is the time to go to the zoo. We were just about the only people in the entire zoo and it was nice and shady. I don't like being there mid-day in the hot sun when it's crowded. We sat looking at the tiger for about 15 minutes while it swam around it's pool and played with some water toys. It was so entertaining! We left at about 7:00 pm and then headed back to the Ronald McDonald House. When I have more time I'll have to write about "Old McDonald's" as Caleb likes to call it. It is such a blessing to be able to stay here!

Friday, July 9, 2010

Round Two!

Here we are at Primary Children's and it hardly feels like we ever left. There are so many familiar faces between the staff and other parents walking the halls.

Erin had an echo cardiogram and the results look normal. Some of the chemotherapy can give her heart disease, but so far so good.

She also got the results back on her spinal tap and it was all clear. No leukemia there. There weren't any leukemia cells the last time they did the spinal tap, but they re-do it just to be sure.

Her bone marrow bioposy showed 2% Leukemia cells left in her marrow. When she came to the hospital last time and they did the bone marrow sample it was so hard for them to get the sample so that they didn't get a good reading. So we don't have a number to base results on. Usually though, patients with Acute Myeloid Leukemia have around 80%-90% Leukemia cells in their bone marrow.

2% Leukemia cells is good for now. For other types of leukemia there usually isn't any leukemia left, but because Acute Myeloid Leukemia is more severe (and more rare) they are happy to have less than 5% leukemia left. We are thankful that it is less than 5%.

We had a really fun nurse today, his name is Irish and he is probably in his 50's. He has a ponytail and a big beard and when he comes to visit Erin he tells her that she has stinky toes and she laughs about that. When we were getting settled he went over a bunch of questions with me. One in particular stood out to me. He asked, "On a scale of 1 to 10 what is your stress level?

I thought to myself, "if I say zero or one, I'll sound like I don't care. I don't feel stressed at all. I think I'll say two just to sound normal. Is this normal? Maybe I should be a 9 or a 10 because this new lifestyle should be stressful right? I wonder if I say something high if I'll get a prize or something?" My mind then wandered to a Brian Reagan blip called "Say Eight." If you haven't seen it, find it and see it. You'll laugh really hard.

I told him "two" and his facial expression didn't change. It made me think about why I am not stressed out? There are a lot of reasons, but mainly it all goes back to my very first post on this blog about the wise man building his house upon the rock. I have recently grown a deep love for the hymn "How Firm a Foundation". The gospel of Jesus Christ is a firm foundation in my life and in every condition, in sickness, in health, in poverty's vale, or abounding in wealth, at home or abroad in the hospital, I'll never forsake. I know that it is my Savior who has given His life for me and I know that He lives. This knowledge gives me hope and it is that hope that makes me feel absolutely wonderful despite what awful things are happening.

Erin started her second round of Chemotherapy today at 6:00 pm. This round is only 8 days long. She'll have 16 doses of ARA-C, 5 doses or Daunarubicin, and 3 doses of Etoposide (VP-16). She seems to feel at home here and hasn't been upset about being back. Of course, she didn't enjoy getting the dressing on her central line changed and she despises the eye drops. Time will move on and soon enough we'll be done.

We are excited that we have been accepted to stay at the Ronald McDonald house. John or I will sleep there with the other kids each night. It's a very nice set-up, and only 4 blocks from Primary Children's. We have a private room and bathroom. We share a toy room and family room and kitchen. Almost every night and some mornings different groups come in and make dinner or breakfast. Today it was the employees from Banana Republic. I'll have to get the scoop from John on how good they are at cooking. He did say that tonight they had some professional bull riders come talk to the people staying at the Ronald McDonald House and they got autographs and tickets to their show tomorrow. This is getting choppy and it's late so off to bed will go this sleep head.

We forgot something

We stayed up packing until 12:30 am last night. We were up at 7:00 am and were out the door two hours later. I was surprised that the kids were so well behaved and excited to be going back to the hospital. We had our van loaded up and we were on our way. As usual, as we drive away John and I start listing things and making sure we didn't forget anything. . . toothbrushes, underwear, socks, etc. We always forget something. Today it was the GPS, we left it in the Honda Civic. But, we weren't too upset about that, it's really just an added convenience. So we didn't turn back to get it.

We got going uphill into Logan canyon when our mini van lost power and slowed to a standstill, luckily John got it to the side of the road before it completely died. This exact thing happened to me last week and we replaced the fuel pump and the fuel filter. We said a prayer and asked that we would be able to get the help that we needed. We called the guys who worked on the van and John had a look under the van. Fuel was dripping from the "unattached" fuel filter. Niiiice, a faulty fuel filter! Trying saying "faulty fuel filter" 5 times in a row, it'll keep you occupied while you sit on the roadside waiting for a tow-truck.

We called my mom, she took my lil' sister to our house and got our Honda Civic and they drove out to the canyon to meet us. The kids ended up in the front seats of the van as we waited and we gave them a lesson on counting the coins we found in the car. It was nice to use the extra time to teach the kids something new. We put everything in the Honda as the tow truck arrived. It was ideal timing. We drove off only one hour behind schedule.

We were thankful for the willingness of my mom and sister to just jump in their car and save us. We were thankful that the car problem was the mechanics fault and that we didn't have to pay for it. We were thankful that we had some extra time to just sit and chat and have fun in the car on the roadside. We were thankful that this happened in Cache Valley and not somewhere else.

We also thought it was a little ironic that we ended up with the one thing we forgot in our hurry to leave, our GPS.

Thursday, July 8, 2010

A cutie!

Erin had her Bone Marrow and Spinal Tap done yesterday. We'll know the results on Friday when we check back into the hospital. She did really well, and doesn't seem to be in any pain. Her ANC is still 900 and we're happy about that. She has been playing and enjoying her time here so much! Right now she's twirling in the middle of the kitchen and saying, "look mommy, I'm dancing!" She's so cute.

Tuesday, July 6, 2010

Counting Down the Days

We are counting down the days until we check Erin back into the hospital for another month long stay. It feels good to have one stay behind us and only 4 left to go. I've never SO looked forward to Christmas before! It seems strange to want to skip through summer and fall (my favorite time of year) and just jump to winter. Our goal is to be done with Primary Children's by Christmas! What a great gift that would be.

Little Air Bear's ANC is 900 today. The Primary Children's nurse told me that it is normal for it to drop down (it was 1600 last Thursday). Her platelet count has moved up to 277 (it was 176 on Thursday). We're still very thankful that she is able to be home with us. She is such a delight to have around. We just went to the library and checked out some books to read. I just read to Erin and put her down for her nap and John is swinging in the hammock with the other two kids and reading to them. Erin is so happy here at home and I think that she is really feeling good too. It's stinks that we have to take her back to the Hospital and fill her body with poison to get her well.

Tomorrow morning John will take Erin to Primary Children's to have a Bone Marrow test done and a Spinal Tap done. These procedures will be outpatient, but she will be under some anesthesia. We will check her into Primary Children's on Friday mid-morning for her next stay. Basically, we have the rest of today, Wednesday afternoon, and Thursday left until our life goes haywire again. What would you do with your last 3 days together?

Monday, July 5, 2010

Independence Day

Little Yoda with her sparkler

Celebrating John's birthday!


Frisbees make a great necklace!

Digging in the sand

Playing in the lake

Watching a movie



I think that it is so ironic that we have been blessed to be out of the hospital over this Independence day weekend as we are enjoying our independence from the hospital! I am so thankful for this country that I live in and for the liberties that we enjoy. The last few days we have almost felt like a normal family. We spent Friday to Monday at Bear Lake with my parents. Aside from doing our best to keep Erin from getting her central line wet we have been vacationing as we usually would. We played at the beach and in the water, rode jet skis, watched too many movies, ate too much junk food, celebrated John's birthday, swam in the pool and hot tub, watched birds, watched all the fireworks around the lake from our window, lit sparklers and threw snaps, and above, all relaxed. It is wonderful to take time to relax and not have any cares weighing upon our shoulders. We try not to think about going back to the Hospital next weekend.

Saturday, July 3, 2010

A Very Suprising ANC!

It is wonderful to be home! We are thoroughly enjoying our time together without the pressure of figuring out who is going to be at Primary Children's. We have been getting to know how our Home Health Company works. It's really been a nice to be taken care of, they call and send us supplies and medications and we have a nurse that comes two times a week.

Our nurse came on Thursday and drew some blood from Erin's line. We were pretty astonished to find out the next day that her ANC had literally jumped to 1600. Yes, you are reading that right. 1600 (average ANC is 2000-3000). Wow! She was 900 the day we checked her into the hospital so I'm sure she's feeling better than she has in a very long time.

We are thankful that her ANC (fighter white blood cells) are so much higher, it really eases our minds about having her home (although I still use Clorox wipes each night on just about everything) . Our nurse at Primary Children's Hospital called and okay'ed her to go to some public places but we are still not allowed to be around anyone who is sick. We were also told to stop giving her the Fortaz (antibiotic) that we had to give 3 times a day through her line. We are glad that we don't have to stay up late and then get up early to give her that medication!

It has also been really nice to have a Home Health Nurse visit us twice a week because they have been changing her dressings on her central line. I am so glad that I haven't had to do that all alone yet!

I am so thankful for all of you who are helping us get through this. Sometimes we feel like nothing has changed and other times we just wonder how in the world we ever got into this situation. My perspective on life has changed so much. There are so many trivial things in life that we areoften enticed to think are important. Family and our Savior (as Cecily once told me) are the most important things in life. We are so grateful and thankful for your prayers, fasting, hugs, notes, cards, gifts, new friends we've made, and your thoughtful words of encouragement.

Thursday, July 1, 2010

Playing in the backyard

I've uploaded some photos of Erin (just finished her Acute Myeloid Leukemia treatment round #1) playing in the backyard with Cecily and Caleb. She was so excited to be outside and to run and play. There have been a lot of adventures as we've been together. Lots of crying because we are a family with little kids. Lots of laughing and giggling and tickling. And a lot of dancing.

acute myeloid leukemia
acute myeloid leukemia

acute myeloid leukemia

acute myeloid leukemia

acute myeloid leukemia

acute myeloi leukemia

acute myeloid leukemia

acute myeloid leukemia


acute myeloid leukemia Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"