Happy Day!!!

Well, it started off a little slowly.  Ainsley wanted her medicine as soon as she woke up.   She quickly took it and said "nothing to it!"  Today was a double medicine day.   There is a liquid antibiotic that she takes 3 days a week.  So we take it Friday, Saturday, and Sunday.  It prevents a specific type of pneumonia that is common in those with immune compromise.  So for her to take both that and her regular medication so easily was great!

But after that is where things slowed down.  Her back has hurt off and on since Thursday's Lumbar Puncture and bone marrow aspirate.  She hasn't wanted to walk much.  After she ate breakfast, she gingerly climbed down from her chair and wouldn't let her toes touch the floor as she walked.  She laid down and just cried.  Then she started to say her head was hurting.  Since the diagnosis, she has refused to take anything for pain (Tylenol).  Even after surgery!  As soon as she complains of pain, we ask her if she will take the medicine and she says "No!  I don't want medicine!  It doesn't hurt anymore!"  We could see how much pain she was in, though, and persisted until she finally took the medicine.

A few hours later, after a nice nap, we got to see glimpses of our Ainsley again!!!  It was a beautiful afternoon and she went into the back yard to play with her sisters!  She went out with them into the front yard and drew with sidewalk chalk.  Her sisters have been very good in the past at doing lemonade stands, and this afternoon they drew up cardboard signs asking people to "bye braslets" and yelled as loud as they could "buy bracelets here to support our sister who has cancer!"  I must say, we have very kind and supportive neighbors and they got quite a few people to stop by.  The whole time, Ainsley was enjoying playing with them and soaking up the sun that she has not been able to see for a while.

Here she is with the artwork she designed and wanted to sell along with the bracelets.  

Here is Ainsley's Army in Logan, Utah!  Thank you all!  This was Ainsley's cousin Addie's baptism.  What a happy day!  We wish we were there.  We pulled this picture up and went through to identify everyone that was in it.  Ainsley would say "it's Addie!!!" and "it's Sammie!!!"  She was so excited to see each person.  She asked me before we even pulled it up if Brookie was in it?  Brooklyn is her cousin that was born just a few weeks after Ainsley.  They only get to see each other a time or two each year, but they are such cute friends and remember each other throughout the year even when they are apart.  Thank you all for the support!  Loud and Proud!  We love it!  Thanks Aunt Shari for sending the picture, it came at just the right time and truly helped build her energy.

Ainsley's Army Thundering Up!!!  Here we have two of our favorite people in the world, Kennedie and Emelie!  Thanks ladies for strengthening our army with the Oklahoma City Thunder and Rumble.  Loud and Proud!

Another shot of the the whole family!  Thank you Jon, Debbie, Kennedie, and Emelie!  How we ever got so lucky as to have friends like you is beyond us, but we are so grateful!  Love you guys!

 
As we were going to bed tonight, she decided she wanted to join her sisters to sleep!  (She usually won't leave the front room). As we were tucking them in, I gave each of the girls big "zerberts" on their cheeks and said "how would you know your Daddy loves you if I didn't do that?"  They laughed and for the first time since her diagnosis, Ainsley REALLY laughed.  The girls started giving "zerberts" to each other and Jenny and I just loved listening to all of them laugh and play together.  We really haven't heard Ainsley laugh like that for over a month.  What a happy day it was!!!

The Last Day of Induction

Yesterday was the last day of the "Induction" phase of Ainsley's treatment.  She finished it off the way she started, with a lumbar puncture and bone marrow aspiration.  It went well.  Her ANC has continued to improve, so have her white blood cells.  Her platelets are staying strong as well.  So that is positive.  We will find out in the next week what the bone marrow looks like to determine the residual disease left (it gets compared to the first look at the bone marrow).  It's exciting to find out how she responded to the chemo.  She'll get the full 2.5 years no matter what the marrow looks like, but the pathways vary a little bit depending on the cancer cells that may or may not still remain.  She did well, but she is definitely feeling it today. 

Last night at dinner, we were looking ahead at the next month.  Grandma Sue leaves today and we were starting to feel the weight of not having a third adult in the house with us.  We are so grateful Grammy and Grandma Sue each got to be here over the past month.  Ainsley wasn't feeling well, Hudson was crying, Meili, Rhyan, and Ava were telling us about their day; of course all at once!   It was quite a sight.  Jenny and I looked at each other with that look of "Are we going to survive this?"  Jenny joked that maybe she could just run away for a little bit.  Ainsley looked at her and said (in her cutest little singing voice)"Mommy, if you stay here, after dinner you can spank my Tushie!"  It was some well-timed comedy relief for sure.  After we all laughed, she said "that will make your tummy feel better!"  She sure knows her way to a Mommy's heart!


We are anxiously awaiting the steroids to begin wearing off.  Her last dose was Wednesday night.  I know it sounds like a broken record, but oh boy will it be nice to get our little girl back from those steroids.  Thank Heaven for medicine that gets her better, but it doesn't mean I have to like it, right ;-)

Finally Fixed the Bracelet Donation Button

Thanks for your patience on the bracelets.  We finally have paypal on the website running again.  The instructions are on the right hand side.  More updates on Ainsley's chemo appointment to follow.

Calling in the Troops! Ainsley's Army!

We are so excited to announce that the wrist bands have arrived!  They say "Ainsley's Army" with ribbons on each side.  They are orange and white.  ORANGE is the color of Leukemia awareness (and is not necessarily an endorsement of any particular college or pro athletic team...although OSU, Boise State, and the Denver Bronco fans around certainly won't complain I'm sure ;-) )  The Orange and White camouflage is for the Army effect.


So here is the mission objective!  We are so grateful for the outpouring of help and offers to help!   My cousin's son, Lincoln is fighting Lymphoma and has Team Linx bracelets (https://www.facebook.com/teamlinxcourage).  It has been so fun to watch as people have taken the bracelets to fun places in the community and around the world!  We want you to take creative pictures with your bracelets on and send them to us!  Share them with your friends!  We'll post them on her facebook or blog and she'll be able to see all of us that stand with her!  We will mark the places the bracelets have been on a map for Ainsley to watch her Army grow over the next 2.5 years.  This little girl is such an inspiration to us and hope that she can inspire others around her.  Thanks for joining us on this journey!  We couldn't do it without all of you!

We want to especially thank and recognize our dear friend Dan Vance, and his team at Elevate Promo.  Jenny and Dan have been friends since childhood and his company is based in Provo, Utah.  I'm going to go ahead and shout out his company because we are so pleased with what they have done for us!  (Hope you are okay with that Dan ;-) )  They have a video on their website that will show you just a glimpse of what they can do.  I agree with what their website says: "Elevate is Utah's premier promotional products company.  [They] specialize in providing unique promotional marketing solutions, from custom branded polos to specific company logo products and programs developed to increase sales.  However, [they] do more than just supply you with top-of-the-line branded promotional products, [they] help you put the swag in swagger!"  I'm a huge fan and was amazed at the things they can do!  You can visit them at this link:  http://elevatepromo.com/

Hulk Smash!!! Ainsley Smash!!!

So we are nearing the end of the daily steroid dosing for chemotherapy.  After tomorrow we will only be giving them to her for a few days each month, rather than twice a day every day.  Steroids have definitely had their effects on Ainsley. 

First of all, the hunger.  We've spoken about it before, but she seriously wants to eat around the clock. Not just anything, she is LOVING deviled eggs, scrambled eggs, yogurt, crepes, ham, any cheese (cottage, cheddar, etc), goldfish crackers, cereal (Chex please!), macaroni and cheese (the regular type--not the Phineas and Ferb kind, they don't taste right), and chips.  She is craving protein more than anything, which makes sense because some of the chemo is targeting the breakdown of certain proteins.

Next, her body hurts.  When we went into the hospital for one of her first few treatments, the nurses and doctors were surprised that she was walking in on her own.  They said most children's bones hurt so badly that they will not walk.  It explains why she doesn't want to do much more than lay down each day.  We were over the moon the other day when she got up to play with her sisters for twenty minutes. 

Body changes.  Anyone that has seen someone with Cushing's Syndrome or who has taken steroids for prolonged periods, has seen the Moon Facies (puffy, swollen cheeks), Buffalo Hump (fullness over the back of the neck), and generalized body fullness.  It's tough to see my little girl change so dramatically in just a few weeks.  If you see her you may not recognize her.  Of course, there's also the hair loss.  It's about an inch or two long now and thin all over.  A lot of scalp is visible on this girl.

The 'roid rage.'  Oh boy!  They warned us about this.  We expected it, planned for it, and it still surprised us.  Emotionally labile for sure.  We are okay as long as we can guess everything she is thinking or may want...and make sure to have it on-hand at all times.  So, as you've probably guessed, we strike out quite regularly.  We get our sweet little girl's voice for an hour a day.  For the rest of the day we get "Ainsley Smash!!!"  That's a shout out to all you Hulk lovers--"Hulk Smash!"  Ainsley's awesome buddy Bowden loves Hulk Smash!  Aunt Becky sent her a Hulk Smash pillow!  One of the most memorable was a late Saturday night when she decided she wanted fish crackers.  I had been to the store that day, but those were definitely not on the list.  I told her we didn't have any and she screamed "you are the worst Dad EVER!!!!"  She followed that by telling us "I want new humans!" (Someone has seen Bolt a few times?)  That was where a lot of the screaming started.  If the answer is no, then the natural response is to DEMAND, in a louder voice.  If that doesn't work, then SCREAM YOUR DEMAND.  Especially if the answer is, "Ainsley, we don't have that and the store that does is closed."  That is when she screams the LOUDEST because that will certainly change everything.  As I'm writing this, we just had a battle over which type of chips she wanted.  Not having the chips she wanted in the house certainly made things worse!  Who knew she didn't want the kind that she had been wanting for the past week?  This Daddy should have... ;-)

Here's the progression in picture form:

Ainsley's Birthday, 3 days before diagnosis

Hulk Smash!  The doll Aunt Becky sent to her, about 1 week after treatment started.

Ainsley leaving the hospital Sunday night, about 3.5 weeks after diagnosis.

Faith--Putting My Substance Where My Hope Is

Early Saturday morning Ainsley started throwing up, which continued off and on for a number of hours. After that she was wiped out. No energy. Wouldn't eat or drink anything. We brought her back into the hospital Saturday night and they've been tanking her up with fluids and did blood cultures, urine culture, etc. So, I'm here hanging with my girl! She brings the biggest smile to my face, and I absolutely love every moment I get to spend with her. Ainsley Elleanor...you are a dream come true! Your Mom, Dad, 3 sisters, and little brother adore you!!!

 During the puking episodes, at 400 in the morning, Jenny and I switched off between helping her, cleaning up the mess, and helping Hudson. We both collapsed on the couch, sleepy, and Jenny rested her head on my shoulder. I'm sure it was quite a site, both of us with our puke-essence, bed hair, pajamas, sleepy eyes...but it was such a tender moment. We sat there, not saying anything, just drawing on the peace of the moment. Ainsley wasn't puking at that time, Hudson wasn't crying, and we just sat. I can't imagine going through this with anyone other than Jenny, I wouldn't be able to. She is amazing. We both have our moments of crying, laughing, strength, courage, fear, hope, uncertainty; and we balance each other out so well. It was a sweet moment that I think all-too-often gets missed in life.

Since I'm in the hospital, I'm unable to teach the 14-15 year old boys (Teacher's Quorum) at church today. I was really looking forward to the lesson. This month we have been talking about what it means to have faith in Jesus Christ and how the Atonement of Christ helps us through our trials. We looked at Hebrews 11:1, "Faith is the substance of things hoped for, the evidence of things not seen." It seems that people often look at 'things hoped for' and 'things not seen' as the key points. Detractors from faith may challenge that a belief in God is simply 'hoping' for 'something you don't see.' There certainly seems to be a push toward the idea that if you can't confirm something scientifically or see it, touch it, feel it, then it doesn't exist. If it doesn't jive with current science then it can't be true, right? But that would be assuming that current science is the ultimate knowledge and that is something that current science by definition doesn't agree with, because it is constantly trying to discover new things and prove new things. So the constant isn't current science, the constant is the law that created the laws that govern nature and the elements. We cannot defy gravity, we can only use what we know to counter-balance it (ie an airplane wings, engines, expanding gases with heat, etc). With this in mind, all of my years of schooling and studying science and the advancements of medicine, have further strengthened my belief in a God that is the creator of all things, rather than detract from that belief.

 So looking at that scripture again, we see that faith isn't simply 'hoping for what we don't see.' The other operative words here are 'substance' and 'evidence.' Alma taught that faith is like a seed (Alma Chapter 32 in the Book of Mormon) and that we can experiment with faith by planting a seed and seeing if it grows. If it does, then we know that it is good. It hasn't yet grown up to a tree, with the deep roots and leafy branches that provide shade from the elements, a limb to climb on, or a branch to swing from; nor has it provided delicious fruit to sustain us. But is has started to grow and we know that those things will follow a well-cared for and nurtured seed. If not, then we are simply letting a good seed sprout and then leaving it to die. Our life is full of choices and each choice or step we take leaves a trail behind us that is proof of how we chose, what we thought, and what we believed. Our faith is the SUBSTANCE that we put toward obtaining what we hope for. The Lord will reward that faith with EVIDENCE of the things that we haven't yet seen. The seed grows and as it grows it becomes closer to that full-grown, fruit-bearing tree that we hope for. We have every evidence that is exactly what it is becoming even though we haven't seen the final product yet. So it is with our Faith in Jesus Christ. We make choices and efforts each day to put our SUBSTANCE (our efforts, thoughts, words, actions) where our hope is (for grace through His Atonement to make us whole again). He in turn gives us EVIDENCE (comfort, thoughts, an answer to prayer, understanding, peace) of what we haven't seen yet (Him).  As we put our substance where our hope is, there is no limit to the amount of evidence the Lord can provide us to sustain us and guide us down His paths.

 Jenny and I were talking about this journey with Ainsley.  It's a daunting thought to see your child facing cancer. But at the same time, since the moment she was diagnosed, we have had an overwhelming sense of calm and confidence that this is a road that Heavenly Father will guide our family down, travel with us, and not leave us comfortless. That has already been shown to us over and over in the peace we feel in our hearts. I'm so grateful for that calm assurance that I know can only come from God. I love the Lord and I'm trying to make the choices each day that show the Lord that I love Him and want to follow His commandments.

 Elder Bednar spoke about having faith not to be healed. When we think of faith-building experiences, we often think of those times when, against all odds, someone was healed, something was found, or something was obtained. But we are supposed to follow the example of Jesus on the cross, when he said 'thy will be done.' We tie our faith to a certain outcome and our fear to the opposite outcome. If the thing we hoped for happens, then our faith grows, but if it doesn't, then we lose faith and allow fear to take over. But one thing I've learned from this experience so far is that my faith has already been strengthened in ways that I never knew it could be. I know that the Lord is in charge of Ainsley's journey and the journey that each of us face in life. And the journey is the beauty of this life. The ending is in the Lord's hands, and if that is complete remission and recovery or relapse and recurrence, it is His journey for our family and it will be a journey worth traveling. We pray each day for healing and anticipate a complete recovery. But our faith is not tied to the outcome, our faith is tied to the fruits of the Spirit (Galatians 5:22-23) that accompany us through the journey, knowing that it is a journey that the Lord is traveling with us and carrying us when the burden feels too big to carry on our own. That removes fear from the equation and allows us to navigate each step in faith, which provides opportunity for true miracles to happen.

The good new is, that she is coming home today!!!  Here's a parting shot of her at the hospital.  Notice the beautiful American Girl dolly.  They have matching pajamas now and will have matching hair styles in the near future...we are still working on convincing her that his a good idea. ;-)

The Weeds and Grass of Leukemia

Yesterday was Ainsley's chemotherapy.  She did better having her port accessed than ever before!  We put the EMLA numbing cream on about an hour before, and then the nurses told her that if they didn't hear any crying, that she'd get to choose a gift from the special reward cabinet.  There was a beautiful dolly in there that she really wanted.  She lifted up her shirt, showed them her port site, and let them access it (stick the needle in).  We are very proud of our little girl!  She also, out of the blue, decided that the toilet was her friend again.  We'll see how long that lasts, but that was a welcomed relief.  Her bowel movements are improving as well!!! (Yep, three exclamation points, because that is a BIG deal around here)

So each time Ainsley goes in for her treatments (1-2 times per week at this point), they check her lab values.  We talk the most about her platelets (stop bleeding and therefore bruising), her hemoglobin (oxygen carrying portion of the blood, this is the number that indicates "anemia"), her White Blood Cell count (these are the cells that fight infection, but this number can be sky-high with leukemia, but they aren't working; it is also wiped out to almost immeasurable with the chemotherapy), and her ANC (absolute neutrophil count, the portion of the white blood cells that can actually fight off infection).  Ainsley showed great improvement in all areas!  Her platelets are actually back to normal and her ANC has improved so much that she doesn't have to wear the mask at the doctor's office!  She even had some measurable white blood cells!  This shows that her bone marrow is working to rebuild the good cells, instead of being overrun by the cancer at this point.  It's a 2.5 year battle, but Ainsley is clearly showing Cancer that she is up for the fight!  We thank you all for your thoughts and prayers as we know they are helping with her recovery!

A good way to think of what is happening with Leukemia is this:  Your bone marrow produces your Red Blood Cells (RBC's), White Blood Cells (WBC's) and Platelets (like floating globs of chewed-up gum that stop bleeding).   Your front lawn is like your bone marrow and blood stream.  Leukemia is like a weed that takes over your White Blood Cells and causes them to be mass-produced, taking over your lawn.  Chemotherapy is like a weed spray.  The goal is to kill all the weeds and stop them from coming back without killing the grass underneath it.  Next week they will sample Ainsley's bone marrow again to see the weed/lawn levels.  The fact that Ainsley's platelets and ANC have improved so much shows that the lawn is regrowing and the weeds are retreating.

Many of our friends and family have been wondering about the treatment process over the next 2-3 years.  The truth of the matter is, so have we.  The first 30 days is a set regimen, with the future dictated by her response.  The consistent part is the time.  They have found that if they stop the treatment before 2.5 years, the leukemia (ALL) comes back, but if they complete the 2.5 years, they can cure it over 90% of the time.  It's also interesting to note that they only treat girls for 2.5 years, and boys with ALL have to be treated for 3.5 years.  So regardless of her response, we'll be making weekly trips to the hospital for her chemotherapy treatments until about September of 2015.  "Inch by inch, life is a cinch.  Yard by yard it's hard."  Or as Dory would say "Just keep swimming, just keep swimming..."  They did say that at some point toward the end it may be every 2 weeks!

With time, Ainsley is starting to adjust to life as her new normal.  She greets each morning saying "I'm ready for my medicine" and instructs us on how she'd like it:  "one pill" (meaning she wants it all crushed into one bite of cottage cheese; two pills means two bites) and "chase it with (her choice of beverage or food)."  She usually chooses milk or chocolate milk for the chaser and whatever she is eating for breakfast or dinner.  Who ever thought my 4 year old would be talking about "chasers?"  She has started to tell me she loves me and I'm "the best Dad ever!"  I'll take it!   This little girl melts my heart!

How We Got To Tulsa

Jenny and I have been thinking through the events that guided us to be where we are right now, and are so grateful for the guiding hand of the Lord.  About 8 hours after we had been informed of Ainsley's diagnosis, Dr. McDowell, Ainsley's Pediatrician, came to visit in the hospital.  He was so kind to visit and brought Ainsley a sweet note and care package from his office.  During our visit I told him how grateful I was that we ended up here in Tulsa for residency, because if we had gone with another residency opportunity that I had, we'd have been about 2 hours away from the nearest children's hospital; not to mention I wasn't sure what Pediatric Oncology would be available there. We could have been driving many hours each direction, multiple times a week for the next 2.5 years!  Not to mention the fact that the whole first week in the hospital would have had our family separated by that distance.  No chance for Ainsley to see her sisters each day like we were able to do here in Tulsa. He looked puzzled at me and said "you've already thought of that?"   

In reality, this has been a frequent thought on my mind and in our family discussion over the past number of years.  When I began the journey of obtaining a residency in Otolaryngology (ENT), Ainsley was just one month from being born.  I was preparing things to hopefully get a spot in a program in Pennsylvania and was setting up my rotations accordingly.  I still had a few more rotations to set up.  Meili (age 5 at the time) and I were driving down the road just before Ainsley was born, and she said "Daddy, next year when we move..." and stopped.  I asked her where we were moving to?  She said "Oklahoma."  At the time I didn't even know that Oklahoma was an option for residency.  I called and they had an opening for the exact times that were still left on my schedule.   One day, before the ranking lists were to be turned in, I was fasting and during the fast, I received a call that allowed me to feel confident in my ranking Tulsa as my first choice.  The rest, as they say, is history.   It all started with a 5 year old telling us where we were going to move to, before we even knew it would be an option! 

That really is a short summary, and doesn't clearly reflect the dramatic alteration of direction it was for us to not go to Pennsylvania.  It was a difficult phone call to make to let the Pennsylvania program know that I wasn't going there, but it was the right decision.  We are so grateful we followed the promptings of the Spirit that directed us here. 

Once we arrived here in Tulsa we were going through withdrawals from the wonderful friends we had in Arizona during medical school.  I was sitting in church one day just after moving here and praying that we would have friendships to help us through the 5 years of residency; because friendships had been so instrumental in getting us through medical school.  Within minutes of this prayer, an announcement was made that a new family was moving into our ward, the husband was starting residency at the same hospital I was, and they needed help unloading their truck.  They said the address and I thought, "that is 3 doors away from us!"  Then they said the name, and it was a friend of mine from highschool!  We hadn't seen each other for over 5 years and had no idea that each of us were ending up here.  We like to claim responsibility for praying Trevor and Mandy, and their beautiful family here!  Love you guys!!!  Actually, we feel personally responsible for praying a number of families to the area and are so grateful for the amazing support system we have around us.  Our prayers were answered, perhaps some of them feel like it is their worst nightmare come true ;-) (heheheh).   

Breakfast, Lunch and Dinner (not all the same day)

I just spent the past hour re-reading our blog posts to try to catch myself up on where we were.  Thanks to all of you who are following along!  Every day I talk to different family members and friends and find that I am often repeating some stories and missing others. 

The past week has gone by remarkably fast.  Ainsley has moved on from vanilla yogurt and cheese slices, to cottage cheese and cheese slices.  We crush her pills and put them into a bite of cottage cheese.  Works wonders!!!  We have also found we can put the Miralax in her cottage cheese without her tasting it.  The result:  We are gaining better control of her tummy pain and bowel movements!!!

I'll just warn you that if you are squeamish about bowel movements, that you may need to skip through some of this, because it's pretty graphic.  But there are wonderful miracles and stories that we want recorded, so I'll put them in.  We did, of course, spare you the pictures ;-) 

For a few weeks before Ainsley's diagnosis, she had some constipation issues.  A few hard stools had resulted in a lot of pain, a little blood, and a paralyzing fear of going to the potty.  This is how constipation usually works on kids her age, one or two painful bowel movements results in voluntary holding to prevent another painful experience, which leads to further constipation and more pain with the next bowel movement.  So we had been working with her to get her back on schedule before finding she had Leukemia.  But constipation presents some very unique problems with Leukemia.  Vincristine, one of the chemo drugs she gets weekly, causes constipation.  On top of that, you cannot give suppositories or enemas to chemo patients, because you can actually introduce the bacteria from the bowels into the blood and that can become a very serious infection, even life-threatening, because of their immune suppression. 

So we were down two-strikes when we started:  Ainsley now had over a month of hesitancy to use the potty and already had some bleeding with bowel movements.   She could somehow taste the Miralax no matter what drink we put it in (and no matter how sneaky we were--she didn't know it was there!)  The colace was so nasty to her that she vomited it back up almost every time she took it.  We were at a loss and knew she was getting very backed up!  Her poor little tummy!  Add to that, she is definitely seeing the ravenous hunger side effect from her steroids.  So increased intake and decreased output means over-sized middle!  If the colon gets too distended (overfull) it actually loses the ability to contract, resulting in Mega-colon.  I realize that is far south of where I usually practice (I focus above the collar bone) but I knew it was possible. 

On Monday morning we had to go get her labs drawn at 9:30 am.  Her platelets were once again in the teens and her hemoglobin was 8.  She was tired and lethargic.  They gave her platelets and packed red blood cells, which both take time to infuse (hours).  We finally got out of there at about 6:00pm.  As if that wasn't hard enough on her little body, we watched through the day as her already painful, swollen tummy began to get more painful and more swollen.  By the time we were home and ready for bed, Jenny and I were seriously concerned about her and considering taking her back to the hospital.  I called Trevor over and we gave her a blessing.  She fell asleep and not 20 minutes later produced the largest bowel movement I had ever seen.  I'll spare you the details, but lets just say that it did not look physically possible to have come from her.  The miracle was:  no blood and her stomach was back to normal!  So thankful for the power of Priesthood Blessings and so grateful to be able to provide those to my family and friends, and to have faithful friends like Trevor that can join me at the drop of hat to administer them.  Since then her bowels have definitely been on the up and up!  Yeah!

Breakfast
Ainsley's appetite bears mentioning in detail.  She is always hungry right now because of the steroids.  She loves yogurt, cottage cheese, Tilamok Cheddar cheese, scrambled eggs, Chex cereal, Frito Lay chips, and, of course, Jenny's famous crepes.  Sunday was my birthday and I wanted Jenny's crepes for dinner.  We were all in heaven.  The next day, while getting her blood, Ainsley asked Jenny to make her some more crepes.  Jenny said we would tomorrow.  Well, each time Ainsley fell asleep, she woke up asking for them again.  With as tired as she is and frequently as she naps right now, she was told she'd "have them tomorrow" at least 7 times.  That's 7 days of being told "tomorrow" in a 4-year-old eyes.  So when Ainsley woke up at 3 in the morning, demanding her morning crepes, she just about had Jenny out of bed making them for her.  Thankfully, she was appeased with some of her other favorite foods that are more accessible at that time.   Tuesday morning we did make crepes, and boy were they delicious!

Lunch
Jenny and I got to sneak away to go to lunch to celebrate my birthday (a few days late).  We went to a favorite restaurant, Cheddars.  We had Hudson with us, and he was sleeping sweetly in his car seat.  The waitress came to the table and asked how old he is and we said "two months!"  She looked at Jenny and said "Momma, you look great for having just had a baby two months ago!  Do you have other children?"  She was downright astonished when Jenny told her Hudson is our 5th baby.  I took the moment to brag on my remarkable wife (who does look AMAZINGLY HOT--ALWAYS by the way!)  I said, "the part you don't know is that we also just found out that our 4 year old has Leukemia and this is our first few hours alone together since we found out, and she still looks this good!" The waitress got a little misty-eyed and said, "I'm sorry, but I know that God answers prayers!"  I love that about living here in Oklahoma, everyone is so quick to give God credit and praise Him, even around people they don't know.  We had a great lunch and gave the waitress our card.  She came back with it a few minutes later and said "I'm going to cover this, it is something I feel urged to do, so please let me!"  Now we were all misty-eyed.  We thanked her and walked away touched and once again overwhelmed with the kindness of people around us. 

Dinner
Our ward family has been wonderful!  They certainly know how to love, how to serve, how to help through difficulties, and how to uplift.  Our friend Tiffany was bringing us dinner one evening.  She was putting it all together and found out that her husband was stuck at work.  As she tried to get things together to bring to us, her doorbell rang!  It was the full-time missionaries!  They were both brand new to the area and hadn't met Tiffany before, nor our family.  She opened the door and said "I'm so glad you are here!  Would you be able to deliver some food the Smedley's for me?"  They said yes and she ran back inside to put it together.  As she came back to the door with the food, she asked "did you even know I lived here?"  They responded, "nope, we were just out knocking on doors!"

Those were some of our favorite experiences over the past few days.   Jenny joked that we should have named this post "Crap and Crapes" but decided against it.  I like the title, maybe I'll change it in the future.

A final little update:  We took Ainsley back in for labs and her chemotherapy today (Thursday).  Her platelets stayed above 70k!!!  That is wonderful!  She had been dropping into the teens every 3-4 days since her diagnosis!  It's a little victory but a victory none-the-less!  

Twirling (written by Jenny)

Ainsley is a thumb sucker.  I tried and tried to get her to take a binky, but she is VERY strong willed!  Like everything else, she showed us who was boss!  When Ainsley gets stressed, sick, tired, or scared, she will suck her thumb and twirl her hair.  I have been working with her over the past year or so, to "pet" her hair, instead of twirling it.  She would twirl it so much that she would put huge knots in it and I would have to cut them out.  It was funny when she would correct my good friend Sara for twirling her hair.  She would say, "Sara, you can't twirl your hair, you have to pet it!"  She was good at telling others what to do, but shes had a hard time following it herself!

Ainsley identity is her hair.  Without fail, when someone meets Ainsley, they always mention her beautiful hair.  And, it is beautiful.  My Mom has the same curly hair.  I was so happy that I finally got a baby girl with those curls!  Not only that but it has the most beautiful red streaks in it.  I LOVE red hair.  Hence, I have been dying my hair red since the 6th grade!

When I finally came to terms with the fact that Ainsley really did have cancer, I had to then come to terms with the fact that she would most likely loose her hair.  I was devastated for her.  While we were in the hospital, she saw a commercial of a barbie that you could change it's hair color.  She said, "Your hair is what makes you beautiful."  She said this having no idea that she would most likely be loosing hers.  I decided that I needed to start showing her pictures of little kids that have lost their hair.  I would say, "Look at this beautiful little girl!"  Ainsley would say, "No she's not, she doesn't have hair."  Uhggg.....  My heart hurt....  How was I going to help my baby girl know how beautiful she is, hair or no hair.  I continued to show her pictures over the next few days, and she was given a barbie that didn't have any hair.  I was so excited when after taking a walk in the hall she said, "Mom, I saw one of my friends with no hair!  She was beautiful!"  Tears sprang to my eyes.

It has been almost two weeks since Ainsley began chemo.  On Sunday, I noticed that she was twirling her hair a lot.  She hadn't felt very well, and this always brings her comfort.  We were snuggling on the couch and all of the sudden she handed me a small chunk of hair.  She said, "Sorry Mom, I didn't mean too."  My heart broke for her.  I told her that she was just fine.  Throughout the day she kept handing me more and more hair.  It was so hard to watch.  Today, has been the same.  I find hair balls all over the floor.  I started to talk to her about what is going to happen over the next few weeks.  I told her that because of the medicine she is taking that she will loose more and more hair.  I told her that it is not her fault.  I showed her more pictures of children who have lost their hair.  She asked me, "Mom, how will I twirl my hair?"  and "I don't want to loose my hair."  I told her she was beautiful with or without hair.  Then she said, "Mom, I am afraid the kids at school will laugh at me."  It felt like a punch in the stomach.  My poor baby girl.  Cancer really sucks.  Now as she sleeps, I can cry my eyes out for her pain, but when I am with her, I have to be strong.  She needs to know that we can be strong together.  I am so proud of my 4 year old.  She is so brave.  Even though she is afraid and confused, she is learning, and growing and fighting!  I am so proud to be her Mom.

Some of the hair I have collected from this evening.

First Return Appointment

Our journey has only just begun.  We returned to the hospital Thursday for labs, a visit with the doctor, and lumbar puncture, chemo, and some platelets.  The first seven days after the diagnosis were spent in the hospital.  Now, the goal is to come in weekly for the next few weeks for chemo, lab work, etc. The only problem is that Ainsley's platelets (help stop bleeding) and Hemoglobin (carries oxygen in Red Blood Cells) are both low enough that she is needing transfusions and visits every 3-4 days.  She saw what it was like to access her port...one quick stick...and although she didn't like it, there was definitely a happier calmness over her when she knew that she didn't need to get stuck anymore that day.  After giving her platelets, she got a lumbar puncture and another round of chemo.  In all it took about 5 hours and she was able to come home with us the same day!  The only little setback was that she has an infection from a hematoma on her left hand from an IV stick when she first got to the hospital last week.  They gave her a dose of IV antibiotics and now she is taking oral antibiotics.  She definitely didn't want to add another medication to her daily meds, and her fighting spirit continues to get its exercise ;-)  Monday morning she'll be back to the hospital for a lab draw, and likely platelets and possible packed red blood cells. 

When we arrived home from the hospital, two of our friends from church, Nathan and Emily Christensen came by to give Ainsley one of the most beautiful gifts we have ever received.  Nathan plays the most beautiful violin music I have ever heard.  He has had me in tears at church before listening to his music.  He sat down with Ainsley and asked her about her favorite Primary songs.  "I am a Child of God" is her favorite and is one I found her singing to herself in the hospital and is the one that Jenny sang to her on the day of surgery when she was too frightened to take her medication.  He played it beautifully.  Jenny was taking a nap in the other room and as soon as she heard the music she said she was filled with the most overwhelming Spirit of Peace.  I too felt the overwhelming love and comfort of the Spirit of God.  What a precious gift!  Ainsley has a video of her watching Nathan as he played and it is something I know she will cherish forever.  Once again, those around us knew exactly what we needed before we did.  He also gave her a "Twinkle Box" which is the rough shape of a violin and is how children are taught the positioning for "Twinkle Twinkle Little Star."  Emily is an extraordinary person as well; one of the most gifted public speakers and writers you will ever meet.  She writes a regular blog that is inspiring to read.  Having the two of them in our home was a precious treat.

Ainsley has developed a pretty quick gag reflex now that she is taking pills by mouth.  She loves cheese, so we've been smashing a thin layer of cheese around the small pills.  Since the medicine is not liquid, we are unable to control when it goes in her mouth.  We end up spending half the day trying to convince her to take the medicine, and a few hours later start the process again for the evening dose.  Brings a whole new meaning to "dosido"(hehehe..."dose-y-dose" that was for all of you pun-loving people out there).  A major breakthrough for us was the pill crusher combined with vanilla yogurt.  We'll see how long that lasts.  This girl definitely does not like taking medicine.  As we were sitting there and she was near exhausted from the battle, she looked up at Jenny and I and said "Mommy, why did I have to get sick?" followed by "I wish I didn't get sick."  We couldn't have said it better ourselves.  It felt like a punch to the gut, and no, we didn't have a profound and beautiful answer for her.  "I don't know" and "we wish you weren't sick too" was the best we had to offer.  Sometimes we don't need to have the right answer I guess.  Sometimes there's comfort in knowing that we are all united in not knowing the answer to the same question. 

Tonight, Jenny and her mom took the older girls to Basket-Bingo at the elementary school.  Sounds like it was a rocking party.  Ainsley, Hudson, and I stayed home.  Ainsley is quite the bowler on the X-box Kinect.  We had a fun date and Hudson didn't seem too bothered by how the night went.  During the evening Ainsley said "Daddy, I love you, I wish you were my Daddy forever!"  It was a nice shot in the arm ;-)  I told her I would be and I love her too.  A nice bonding moment.  Don't worry, she quickly got after me a few hours later when it was time for more medication and I was once again greeted with the outbursts of "I don't want you!  I want Mommy!"  Jenny and I seem to be playing "good cop/bad cop" through this and I have the responsibility of bad cop.  She'll thank me when she turns 50 and is still living and strong, with a family of her own that is living and strong.  But until then I'm sure she'll have many "remember the time, Dad, when you took me to the hospital and they gave me shots," and "remember when you told me I had to take that medicine and I spit it all over you because it was disgusting..."  The joy in the journey, right?

Steroids, Regression, and a Daddy's Germaphobia

I was thinking of how to write about these topics all day yesterday...and time just didn't provide an opportunity to actually translate onto paper what was going through my mind.  There is a little more time when Jenny or I sit in the hospital.  Now that we are home, life has to try to return to normal.  Meili has piano and tumbling, Rhyan has tumbling, Ava wants to do artwork and play, and all three of them have school.  Hudson got his shots and has found a whole new form of communication: crying without tears.  Yep, just plain letting his voice be heard that he is upset at the pain in his legs where the shots were ;-)

First things first:  Steroids are a major part of Ainsley's chemo over the next month.  Anyone that has taken or been around someone that takes high doses of steroids (ie severe asthma) can tell you that personalities change a little.  At the hospital we call it "steroid psychosis."  Emotions run a little wild, let me just say, and Ainsley is no exception to that with the steroids she is taking.  We've been trying to find the delicate line between identifying what behavior is attributable to the steroids, what is from the shear amount of change that has taken place in her life, what is normal 4 year old behavior, and what is behavior that needs to be corrected.  Not sure we've figured it out yet.  If we start treating her differently now, then she'll have a whole new level of instability in her life.

Second:  Regression.  We were warned that when a child is ill, they will often regress to a slightly younger stage.  An example is toilet training.  Another is behavior, which blurs the lines above a little more.  We find Ainsley trying to take control of whatever level of her day she can, since much of her past week has had control taken away from her.  She had to stay in a hospital she didn't want to be in, have medicines she didn't want to take, wear a mask she didn't like the smell of, eat food she didn't want to eat, and much more.  Taking medicine, eating, and potty time are her areas to control.  Twice daily medications seem to become an all day affair.  She tries to negotiate, run away from, and generally avoid it, but she does still take it.  Here's a picture of our attempts tonight.  MeiMei was super helpful. 

  Tomorrow morning we return to the hospital for another lumbar puncture and more chemo.  Not sure how she'll feel about having her port accessed, but that will be another topic for another day.

Finally, I'll just go ahead and admit I'm a germophobe.  So with increased emphasis on Ainsley's immune system, I'm learning whole new ways to feel like germs are everywhere.  Meili and Rhyan wanted to make scrambled eggs the other morning, something they are quite good at doing.  Some egg shells got into the mix, so I came into the kitchen to the sight of them dunking their hands into the raw eggs to get the shells.  My germ radar was blaring!!!  I think I kept my cool on the outside, but inside I was certain that the newly sanitized kitchen needed to be resanitized.  Thank heaven for bleach wipes!  The girls made awesome eggs, by the way.  One day I won't look at an egg as the enemy, right?

Therapy for the Mama!

Let me preface this by saying that I feel very inadequate when it comes to writing.  I can cut your hair, take a pretty picture, take furniture from ugly to pretty, paint a picture, but writing.....  It's not my thing!  Just bare with me!

I have had many people asking me how I am handling everything so well.  The answer is that I am not, but at the same time I truly feel like I was being prepared for this.  In my own quiet moments I mourn.  But, I know that everything will be OK.  I know Ainsley will beat this.  I know she needs to see me being strong.  Seeing her hurting, hurts my heart more than I can explain.   It wasn't long ago that I was so thankful that although our lives were crazy and hard, we at least were all healthy.  How quickly that can change.  I looked at Bryan's cousin, who's son Lincoln has Lymphoma, and I thought, "How is she doing this?"  I thought, "I don't know how we would handle something like that, especially since we don't have any family close by."

I must have invited a challenge.  Kind of like when you don't think you can handle a church calling and then that is exactly what they call you to!  The amazing thing is, everyone here in Oklahoma is treating us like family.  They have been amazing and I am so grateful and humbled by their love and service.

Right before Ainsley went back to surgery.  This was by far one of the hardest moments.

Mavis...  Our family therapy dog!  I shouldn't leave out our sweet Lyla too!  (Our sweet Maltese!)  She has also been very comforting for Ainsley!

While we were at the hospital, we met with a social worker.  She encouraged Bryan and I to be sure to take care of ourselves too.  After almost a week at the hospital, I decided a brisk walk with Mavis was just what I needed!  It is amazing how different everything seems.  The sun on the water, the brisk air, the smell of spring...  I just tried to forget my worries and fears and rejuvenate my spirit.  Mavis was a perfect walking companion.  She is not only my girl's therapy dog, but now mine too!

Meili drying her hair for the first time by herself!

On a side note...  Since Ainsley's diagnosis, Meili has aged in my eyes.  My baby girl is growing and maturing so fast.  She has been so brave and strong.  Like her school counselor said to Bryan, "Meili is a wise soul in a 9 year old's body."  Please keep her and my other kiddo's in your prayers too!  They are such troopers.

Cleaning and Coming Home

Guess who came home today?!?!?!?! This girl!

 So, Ainsley's birthday party was supposed to be on Friday, but she was in the hospital. The families of the friends she had invited got together and decided to give her a group gift: A clean house! The Ranch Creek Ward Relief Society had sanitized the place (it looks AMAZING) from top to bottom, and then today a carpet cleaning crew came and cleaned the carpets and the tile floors! Another tender gift from amazing friends was to have our van cleaned and detailed. The house and vehicle have never looked so good! GRATITUDE!

Today, Ainsley had not reacted poorly to the chemo, she didn't have a fever, and her doctor let her come home!!! We are so happy to have her back in our home and to have our family together. She looked at me this morning and said "Daddy, I don't want sisters to know I'm coming home today." I asked why and she replied "because I want to surprise them!" Surprise she did. Jenny and I went to pick up the older girls while Ainsley and Hudson stayed at home with Grammy. When we picked up the girls they were immediately asking when they get to see Ainsley and if she gets to come home today. We said Grammy was with her and we had to run home to get some things. When they walked in the door and saw her, the party was ON!!! (Like Donkey Kong for all you Duck Dynasty lovers...go Uncle Si!) The Smedleys are big fans of that show!

Ainsley was ecstatic to see her new bed when she arrived home.  For the longest time she finds a way each night to end up on the floor in our room at some point during the night. We try to lay a blanket down or something, but she won't have it. We decided that we needed to have a formal bed in our room for her while she is going through the chemo and to prevent her from laying on the floor when she inevitably joins us at some point in the night. This was what she came home to! Also, her assembled, beautiful, birthday bike that Daddy didn't get to put together before the hospitalization. Thank you Trevor and Mandy! 

A special shout out to someone that loves us in Utah and had these paper goods anonymously delivered to our doorstep. Seriously...you all think of everything!!!

Last but not least, today we also figured out how to get Ainsley to swallow some of the medicine she needs to take in pill form instead of the nasty liquids! A major feat for my big girl!  Similar, I'm sure, to the feat of her Daddy finally figuring out how to put paragraphs in his blog posts and have them actually stay that way after it is published.

Well, if anyone has lost faith in humanity, please call and let us tell you about the absolutely AMAZING people that we have been blessed to be surrounded by. The kindness extended toward us has left me speechless. Our house has been sanitized (Shout out to Ranch Creek Ward Relief Society), carpets and tiles cleaned, a toddler bed purchased and assembled so Ainsley can be close to us, her birthday bike from last week assembled (Trevor and Mandy :-) ), food and more food (all of it delicious) delivered at just the right time, perfectly selected gifts for Ainsley and her sisters, kind words, hugs, phone calls, friends inviting the older girls over to play, bringing the girls to and from the hospital to maximize the time we spend as a family, did I mention food dropped off at just the right time? (both at home and at the hospital). The list truly keeps going and I'm sure I've left out too many things. The good people in the world FAR outweigh the bad, despite what you see in the headlines. We really have no way to even begin to express our gratitude...

Sunday was a day of prayer, fasting, and well-wishes for Ainsley. We thank everyone the world over that has sent love and faith this way. We certainly felt uplifted and strengthened. Grammy (Jenny's mom) is here! Yeah! Jenny, Hudson, and I got to spend a few hours here with Ainsley. It was nice to see her personality start to shine through again. We've discussed a lot about her fighting spirit, but she is also one of the sweetest and funniest little girls you will ever meet. What barely-4-year-old understands and correctly applies sarcasm every now and again? I asked her if she knew she was going to get better? Her response: "I'm not sick, Dad, you're sick. Someone take his blood pressure!!!" Yep, speechless. Perhaps I need to get my blood pressure checked? Jenny and I laughed and laughed. Hudson got us all smiling with his happy face: Grammy and the girls came and joined us and the dart games continued (thank you Kile family), as did the sticky-slap-hand toys that the Moore family sent from Arizona.
 I also discovered that my phone had been hiding voice mails from me. Probably the reception in the hospital, but all at once I was flooded with messages from the first few days of hospitalization that I didn't know I had missed. Sorry if I didn't respond to your message, not intentional!

This blanket is a weighted blanket that was given to us by a friend the morning of surgery. You would not believe the comfort it was to Ainsley!!! The nursing staff both before and after surgery were amazed at how it helped her stay calm. This is a link to the mission that makes the blankets, it is run by a friend we have made since we arrived in Oklahoma! Check it out, you'll love it! http://www.myweightedblanket.com/

Raining Cats and Dogs and Tears

Well, when it rains it pours. Anyone that knows our family knows how much we love animals. In fact we are very good at training amazing dogs and then finding them a new home, right before they reach the perfect animal stage! Many have joked that they want the next dog we "re-home"! Almost every Saturday (for the past 3 years), the girls have loved to go to Petsmart where they have the pet adoption. Keep in mind, we are never looking for a dog, just going to let the girls pet the dogs. Last Saturday, we saw a dog that both Bryan and I actually really liked. We have said that we would want a dog for Hudson some day. Although we liked the dog, we walked away. But we both thought maybe instead of looking for a pure-bred dog, we should rescue one. Two families that we are close to have rescued dogs over the past year, and they are the best dogs!

 On Sunday night I was browsing craigslist, (something that is very relaxing to me) and I saw a dog that said it was a golden retriever mix. She seemed perfect and I felt a VERY strong pull towards her. On Monday, I got ahold of the rescue and scheduled a time to come see the dog. After Ainsley's doctors appointment and lab draw, I picked up the girls and we went to go see her. We all fell in love instantly! Fast forward to the next morning... I couldn't believe that we had just gotten a dog and now we are facing the crazy, stressful journey of cancer. I was thinking, "ok, no big deal. I will just call and take the dog back." Right as I was about to tell my plan to Bryan, RhyBabe grabbed ahold of Mavis in a big hug and said, "I am so glad we have Mavis, she makes me feel so calm." Well, how could we take the dog back after that? So evidently the dog is staying. Mavis really has been a great dog. She was originally found snuggling goats on a farm in Oklahoma City before being sent to the rescue in Bartlesville. She was very thin and weary and they diligently worked to fatten her up a bit. She is in good health now. It's funny, because she still eats like it could be her last meal. I will be happy when she knows that she is loved, and safe, and home. I don't see her going anywhere! She has been very healing for me too! I love that about animals. They bring such comfort. In fact they use therapeutic dogs in the children's hospital multiple days each week! Mavis, our new at-home canine therapy friend!

So, you are now wondering what the title is referring to? Getting Mavis would be considered a happy thing right? Well, this morning, I received a phone call from Bryan. He said that our neighbor and friend, Trevor, had found the body of our beautiful kitty, Saraphina, in the road. She had been hit by a car. Last night, I had a feeling something was wrong when I didn't see 'Mew Mew' in the garage. It has been over four years since Bryan called me, while rotating in Oklahoma, and said that he'd had a strong feeling we should get a cat for Rhyan to help her in moving from Arizona to wherever we would start residency. At that time we didn't even know it would be Oklahoma. Saraphina has been amazing for my girls, especially Rhyan. She could "Love" that kitty to death and Saraphina would put up with it. They had a very special bond. When I heard the news I felt like I had been punched in the stomach. How could this have happened? Why would this have been aloud to happen now? Aren't we going through enough already? How do we now tell the girls, who are reeling from having their lives turned up-side-down by Ainsley's cancer diagnosis, that their dear pet is gone? We knew we couldn't try the whole "maybe kitty found a new home" or "maybe the kitty wandered away" routine, because these girls are resourceful and would have turned the whole town and possibly state upside-down to find her. They would be knocking on the doors of every neighbor on every street. Signs of a missing kitty would be plastered on every mailbox and telephone pole around. They would not have given up until she was safe at home.

 So we just went for the straight-forward, honest approach. Bryan told them that sometimes life seems really tough, but that we can grow from our trials. We've had some difficult news this week, and there is some more difficult news, that Saraphina was hit by a car and killed. We were all a mess again. That poor hospital room has seen many tears from this family.



Regarding pets in general, we asked the doctors what we should do with the zoo we have at home: hermit crabs, dogs, and a cat (obviously the discussion took place before the cat accident). They indicated that the potential risks of infection from the hermit crabs (assuming similar bacteria to pet reptiles) was too much and that we ought to find them another home. The cat was fine if it lived outside, as long as she didn't handle it and stayed far from the litter box. The dogs, as long as they were healthy, well behaved, and up to date on vaccines and such, were encouraged to remain as a therapeutic entity for the family much like the therapy dogs at the hospital. Maybe Saraphina's job was fulfilled in helping the girls adjust to the move from Arizona to Oklahoma, and now maybe Mavis was sent to help comfort our family through this next chapter of our big adventure? It feels right so far and I am grateful for the small promptings I have had leading up to this challenge. I am amazed how much life experiences have prepared me to face what we are facing today and will be facing over the next few years.

P.S. One day we will get a new kitty, but it won't be anytime soon. We'll wait till Ainsley is well and able to play with it. Thanks for all the kind thoughts and offers to replace Saraphina, but for now we'll stick with the zoo we have ;-)

Speed Round 3/1-3/2/2013

I have been trying to remember things to record for Ainsley and our family to look back on in the future. Also, I hope the information can be helpful for others that may be facing similar challenges. But in reality, there's just no way to record it all. There is also no way to express our gratitude for the kindness, prayers, and well-wishes extended to our family. Mandy, Sara, and Amerest: thank you for thinking of all the things we would need before we even knew what they were and for arranging the army of help that we have been so spoiled to have on Team Ainsley.  To try to catch up, yesterday went pretty well. Ainsley did not want to have her dressing site changed but she was tough and handled it well. She does not want to eat much. The Kile family brought her some Nerf dart guns to play with and she and her sisters have had hours of fun. It's amazing how she lights up when her sisters arrive to visit. Part of her Chemotherapy is a heavy dose of steroids, which leads to some very strong emotions. Spicy just got spicier, sweeter just got sweeter, and we are waiting for not hungry to turn in to hungrier. Ainsley has definitely learned how to drive an IV pole. NASCAR and Danica Patrick beware, this girl can drive the IV pole, which I am certain will translate into mad driving skills in the future. She has learned how to change her own urine measuring basin in the toilet, because she doesn't want us to do it for her. She is starting to see life through a face mask as she is now officially Neutropenic (not enough white blood cells to fight infection). This also means that any visitors will need to be sniffle, fever, cough-free for at least 48 hours. 75% of the battle is hand washing, so wash and sanitize those hands!

Curly brown hair and brown eyes have been Ainsley since she was born. One of the first things you notice about her is her hair. She looks at her baby pictures, before it grew long, and asks "why was I a boy when I was a baby?" This has gone on for over a year. We have a girl doll that has no hair and she tells us it looks weird. We have started trying to find pictures of women without hair and talk about how beautiful they are. She is definitely going to need to adjust to losing her hair and we'll have to find lots of ways to help her feel girly when her hair starts falling out, which should be some time over the next few weeks to months.

Surgery Day 2/28/13

Ainsley slept very well the night before surgery. There were some morning delays, so her 8:15 case didn't get started until 10:00 or so. Thankfully she slept in and didn't have to feel any hunger or thirst until right before going down stairs. The good news is it gave time for Jenny to get the girls over to Jon and Debbie's to take them to school with their twins (the wonderful Kennedie and Emilie) and still get down to the hospital before surgery. She (Ainsley, not Jenny) was unhappy to wake up. I could tell she was afraid. She wanted nothing to do with putting the gown on, taking her medicines, or anything else that would progress her toward surgery. She finally took the Versed (happy-juice as it is called) and everything changed. It is pink medicine that supposedly tastes terrible, but once it is in, life becomes very funny and relaxed. We will post some video in the future, but she became all smiles and laughs. She looked at me while snuggling Jenny and said "Daddy, you have two heads!" She stared up at Jenny and said "Mommy, your mouth looks funny." She laughed at most things and we had a hard time understanding her slurred speech. Seeing her wheel away from us was heart-wrenching. You could still see the fear in her eyes and the hesitancy to go with the operating room nurses, but thankfully she was disinhibited enough that she couldn't protest.

Three procedures were completed at the same time: 1) The "port" which is a permanent access site that is placed in the chest wall that allows them to give blood, medicine, and fluids; but also allows them to draw blood. It replaces the IV and in the chemotherapy world, becomes your "best friend." No more tourniquets and holding down for IV access. Supposedly the kids get used to coming in, lifting their shirts, and letting the port get accessed. It is designed to last the entire 2.5 to 3 years of chemotherapy. When it is needed, a simple needle poke into a large barrel that is underneath the skin allows access for anything. When it is not needed, everything is under the skin so Ainsley will be able to go swim, bathe, shower, etc. It rests underneath the skin on her left side, below the collar bone, similar to a pace maker. 2) A lumbar puncture (also known as a spinal tap). During this procedure they drew out some cerebrospinal fluid (CSF--the fluid that surrounds your brain and spinal cord) to test for cancer cells and also delivered the first dose of chemotherapy intrathecally (into the CSF). We are happy to report that there were no lymphoblasts (the cancer cells) in her CSF, which means she likely will not need any radiation therapy. 3) A bone marrow biopsy from her hip.

We were relieved when the surgeon came to tell us all went well. We were more relieved to see our little fighter showing her personality in the recovery room. She wanted a "juice box" but when it came as juice in a sippy-cup, well, that was unacceptable and she wasn't afraid to admit it. The next attempt at a juice with a straw in it was not enough either. Not until we got to the room and got her a juice box was her thirst satisfied. But the good news is, despite her opposition to the juice box, she turned on the charm with the recovery room nurses and they were smiling and laughing with her by the end, or perhaps they were high-fiving what she was not there to show them how tough she is.

Not long after returning to the room, she complained of a headache and began vomiting. This could have been from the anesthesia or from the lumbar puncture. She only had a few sips of juice box and a part of a donut after surgery, so that was quickly thrown up and she was dry heaving after that. This continued off and on for the next 2 hours. One episode left a few specks of blood in what she threw up, because she was heaving so hard. Not a fun sight to see on my little girl that has few platelets and low hemoglobin. This was also a day that Ainsley expressed some anger. She hates the feeling of tape being removed from her skin. The EMLA numbing cream they put on before putting her IV in on day one was great for the needle poke, but taking the tegederm strips off that they put over the cream to get it to be absorbed better was probably worse than the needle stick would have been. So from day one, removing tape, EKG pads, bandaids, or dressing covers has been a sad event met by a fighter's spirit. I also see Ainsley channeling that anger towards me (Daddy) because I am always the one holding her when the shots are given, tape is removed, or medicine is given. Medicine, that is a whole other story! She has to take medicine by mouth multiple times a day, and it frankly tastes terrible to her. It is all liquid form and has made her puke a few times. Mostly she just doesn't want it and puts up a tremendous battle. She got her evening dose right after Jenny had taken the rest of the family home to sleep. Ainsley said "I wish Mommy was here and not you!" I told her that she would have to take the medicine no matter who was here. She tried her best to be mad at me and, I'll admit, did a great job at deflecting my impeccably timed humorous efforts... Ultimately, the medicine was taken and we snuggled. I told her I love her and sometimes I have to make sure she does hard things in order to help her feel better. We are getting to the point that she is 70% happy with me and 30% mad that I brought her here. 

Every day so far she has been able to see her sisters. She lights up and perks up like you can't believe when they arrive. It has been hard for the older girls. We have tried to keep the discussion open with them and tried to find ways to help each of them to feel special. It is hard because Cancer is fighting the whole family. It is in Ainsley's body, but it deeply impacts each of us. Ava is 5, and for her, she seems to see it as her playmate is in the hospital and not at home to play. When she comes to the hospital she sees Ainsley, with new toys and stuffed animals and thinks "wow, she's lucky, look at what she got!" Rhyan, age 7, is a little harder to read. She is thinking deeply about things, and afraid of what it all means. She tries to use humor to ease her fears. Meili, age 9 going on motherhood, is full of turmoil as she tries to be the caretaker of her two younger sisters because that is how she thinks and functions. We frequently remind her that we are the parents and she can be a kid. But that is easier said than done; she's a very mature 9 year old. Worries of Ainsley definitely have distracted her since she heard the news. On the way to school on Wednesday morning, Meili asked me "why did this have to happen to Ainsley?" I said "That is a really good question, and I don't know the answer." We talked some more and I told her that "I do know that Heavenly Father knows exactly what each of us can handle in our lives, and Ainsley is facing something that very few can handle but Heavenly Father knows that she can." Our theme, as you have seen, is that Cancer picked the wrong girl to mess with. Ainsley Elleanor Smedley came out swinging as a baby and has not slowed down since. Sweet with a whole lot of spice. As the car got closer to school and the tears started to well up in the girl's eyes, I was grateful for this imagery. The girls laughed as they pictured Ainsley clawing at Cancer (because each of them have felt her clawing, and it hurts!) We laughed as everyone got the chance to chime in how Ainsley was going to claw, bite, spit on, and "toot in the face of" cancer. Not sure why those images are all so funny around our home, but the kids get a kick out of the topic and so do we. We pulled up to the school and repeated what we talked about on the morning of the phone call: Now is the time to be insanely courageous and take the first step out of the car. From there, smile and know that everything is going to be ok. They put on their brave faces and walked right inside. They have done the same each morning since then. My kids have INSANE COURAGE!

Platelets, Red Blood Cells and Echocardiograms on 2/27/13

Ainsley continued her battle with Leukemia by keeping those around her on their toes. She needed a baseline echocardiogram because some of the medications can be harmful to her heart. The technologist that came to do the ECHO got a taste of what Cancer is fighting against with Ainsley. As he pushed on her belly she screamed "you are hurting me!!!" and took a swing at him. She's always been good at expressing her feelings...usually at a decibel level that hovers between a rock concert and a jet engine. The platelets she was given on the first day raised her level up to 73k or so. They wanted above 40k or 50k to do surgery. Her hemoglobin was low, so she was given some packed red blood cells. The anesthesiology team and surgery team came to see her in preparation for her surgery the next morning. We were particularly impressed when the surgeon showed up in cowboy boots. My favorite thing is to operate in cowboy boots!

Bryan's Ramblings

Here are some of the thoughts that I have had so far.

Monday night (the night before the diagnosis), I was needing to study for my exams and for the next day's surgical cases.  For a quick Family Home Evening (FHE) I decided to talk about what we had spoken about in church the day before:  how adversity strengthens us.  I even used the example of my cousin and her son who has lymphoma and the blessings we heard their family receive along the way as they work through a very hard road... (Go TEAM LINX!  We are here with you buddy!)

We finished FHE and I needed to go study.  I hadn't been studying long when I found myself drawn out to the front room where I saw Ainsley and Jenny snuggling.  Ainsley had taken a long afternoon nap, and would not be sleeping any time soon.  She and Jenny were watching a movie and Ainsley asked me to snuggle her.  I did (glad I didn't pass that up for studying) and we snuggled for an hour or more.  While holding her I felt quite a few swollen lymph nodes in her neck and arm pits, and Jenny and I reviewed the many bruises on her back, arms, and legs.  It seemed like more were showing up out of no where.  We were anxious to hear the results of the labs the next day...

The next morning I was just about to go back to surgery for a 7:30 case when Jenny called me in tears.  "They think it's leukemia...and we need to take her straight to the children's hospital."  I'm grateful to a great residency program that allowed me to leave immediately.  Our pediatrician called me while I was driving home and discussed it with me.  The rain was pouring inside and out of my car.  I did not enjoy making the tear-filled call to family members and thank Mom, Dad, Shari, and Aunt Lori for helping me not have to make it over and over.  We were quickly overwhelmed (in a good way) with love and support in texts, calls, and emails.  I am grateful to Dr McDowell for telling us on the phone what he knew and getting things rolling immediately.  If he hadn't told us what he knew it would have been between 6 and 8 hours before we would have otherwise heard the news, and that was with things going smoothly once we got to the hospital.  I can't imagine how we would have felt if he had only told us that the labs were off and we needed to go to the Children's Hospital.  He gave us enough information to allow us to process and be ready for the whirl-wind that would come once we were at the hospital.  He had also prepared everything so we could go straight and get checked in, rather than go through the emergency room.  He knew the admitting pediatric oncologist's name and had all the arrangements.  Sometimes bad news is best delivered over the phone...

Once we got to the hospital, we were quickly reminded that cancer chose the wrong girl to pick on.  If you've met Ainsley, you know that she will go nose to nose with anyone if she doesn't like something.  Talk about a fighting spirit ;-)  She quickly became frustrated with being at the hospital and not at home.  She repeatedly yelled "I told you not to bring me here Daddy, and I told you not to let them give me a shot!  I just want to go home!  I wish we had never come here!"  Painful.  She carried on that way for about an hour and a half after the IV was in as she had to get used to it being taped to her arm and the brace they placed around it.  She finally collapsed, exhausted, into my arms and slept for about 2 hours.  She must have had sweet angels of loved-ones past helping her out because since then she has been able to tolerate the IV without screaming at Dad.  I started to catch a glimpse of just how sick my little girl is when the first attempt at an IV resulted in a huge hematoma in her hand because of her low platelets (which typically help stop bleeding).  Her platelets had dropped clear to 13K, which normal is between 100K and 300K.  I shuttered to think of the implications.  I had seen my patients sick like that, but never imagined it being my own daughter.

My dear friend, and fellow resident, Rusty came to visit within hours of admission.  He brought Pei Wei and a beautiful edition of the Secret Garden for us to read while we are here.  We are so grateful, neither Jenny nor I had even thought of eating to that point.  Soon after that, the pediatrician that discovered the problem, Dr. McDowell, came to visit.  Jenny went to get the girls and bring them down to visit (more on that later).  Another fellow resident, Rob, brought us dinner and chatted.  Andrea and Mark (also resident friends) stopped by and have offered countless hours of support.  Andrea is a Pediatric resident and was one of the first faces we saw in the hospital.  What a relief that was to see a familiar face.  We are at the children's hospital, which is not the hospital I usually work at, but is one that some of the other residency programs at my hospital go to.  Always nice to have familiar faces.

Since the phone call that morning, the girls knew only that we had been crying, that Ainsley was sick and needed to go to the hospital for a few days for some medicine, and that she had some bruises.  I can only imagine what was going through their teacher's minds as they related that info...  Meili had overheard the word 'Leukemia' but was not sure what that was.  Their principal, school counselor, and teachers were made aware of what was going on soon after the girls arrived to school; and that the girls only knew the above info.  They were tremendous in helping the girls through that day.  

Sara picked up the girls from school and played with them for a few hours until Jenny could get home to them and bring them back to the hospital to discuss the details and visit with Ainsley.  When we told them that Ainsley's blood was sick with a cancer called Leukemia, I watched Meili's chest and stomach react like she'd been punched.  There were lots of tears, hugs, and snuggles.  The girls asked a lot of questions and we did our best to answer them.  Rhyan (7 yrs old) asked "so is there a good chance that she will get better?"  We told her YES!  We also talked about some of the things the Team here had suggested we address with the kids:  1) Ainsley's cancer is not contageous, and 2) that no one could have caused it by being mean to or mad at Ainsley and that no one did anything wrong to make her sick.  Both of these are common questions that siblings often have.  They might worry that they caused it by being mad at or having fought with their sibling.  

Soon after that, Trevor and Andy stopped by to help me give a Priesthood blessing to Ainsley.  In Ainsley's blessing, she was reminded that "she is the glue that holds our family together," a blessing she had been given in her baby blessing almost 4 years ago.  She had also been blessed in the baby blessing to know that the Plan of Salvation (the Lord's plan for the happiness of His children)would be very real to her throughout her life, and that was echoed in this blessing.  Her children and grandchildren were mentioned, and how her experiences now will bless many generations to know the love of God for each of his children.  Jenny and I were also given blessings and were comforted.  We had a family prayer together and then I took the older girls home and Jenny and Hudson stayed with Ainsley.  Throughout the day, you would not believe what a great boy Hudson was.  We never dreamed that at two months old, he'd be joining us in the Pediatric Hospital while Ainsley got chemotherapy for Leukemia. As I write that, I'm shocked...  

On Sunday (two days before the phone call), Jenny and I had been discussing how we were finally getting things back to normal.  Getting Hudson here was a long, hard, road.  Jenny was very sick throughout the pregnancy, with severe vomiting, dehydration, kidney stones, sinusitis, and migraine headaches.  My residency was residency, always out of time, money, and sleep ;-)  We honestly have felt so overwhelmed for the past 10 or so months that we were anxiously awaiting Hudson's arrival and getting life back to normal so we could recover from the crazy year we just had.  Then the phone call 2 days later.  Little did we know that the crazy year we just had was the warm-up for the time ahead.  I guess before you run a marathon, you work your way up by running longer and longer distances to prepare yourself.  I am reminded of my favorite Chinese phrase, one that has helped me immensely throughout my life...zhen jin bu pa huo lian (Real gold doesn't fear the refiner's fire).  The first movie Jenny and I saw when we were dating was The Emporer's New Groove.  After a series of mishaps and death-defying events that seemed insurmountable, the two main characters find themselves floating along on a smooth river.  Pacha quickly sees the next obstacle...a huge waterfall.  Kusko cannot see it from where he is and only hears Pacha say "uh oh."  Kusko says "let me guess, a huge waterfall?" Yes.  "Sharp rocks at the bottom?" Most likely. "Bring it on!"  You may have to see the movie to get it, but we have laughed at that phrase and it has helped us throughout our marriage and know that these moments will also pass.  Our Father in Heaven knows what we face each day and has already shown us that He will help make our burdens feel light.  He also shows us that what we thought was a burden before was probably nothing compared to what we are capable of handling when we put our faith and trust in Him.