My heart stopped.....

Last week, Ainsley's platelet count had been low.  It wasn't quite low enough for a transfusion but we were watching closely for severe bruising and petechia, which are little dots of bruising.  I had tried hard to do everything short from wrapping her in bubble wrap to keep her safe!  With her platelets low, it can be very dangerous if she were to hit her head, because it would be hard to stop any bleeding.  I could tell she wasn't feeling very well on Sunday.  She slept most of the day, didn't eat or drink very much and she was complaining  of stomach pain.  It progressively got worse as the evening went on.  I felt so helpless.  She would scream out in pain, and I didn't know how to help her.  Around 8:30, Ainsley's face went pale and I could tell she was going to throw up.  I dumped out the Halloween bucket and ran to her.  My heart stopped when I saw blood.  I started to scream for Bryan.  I was SO scared.  I think I was more afraid at that moment than ever before.

We called the doctor and he said to bring her in.  We called our sweet friend and neighbor, Robert and he came and helped Bryan give Ainsley a blessing.  Bryan and I were both crying but I felt so comforted by blessing.  I am so grateful for a loving Heavenly Father who knows our needs and helps calm our fears.  I am also SO grateful for a husband who is worthy to give her a blessing.  This is what Bryan posted on Facebook.  

This is Bryan. We are so thankful for all of your prayers and the opportunity to give Ainsley a Priesthood blessing after she had thrown up a stomach full of blood. She and Jenny are finally sleeping. She is getting a platelet transfusion. Her hemoglobin (oxygen-carrying part of the blood) is low but stable enough for now. The blood in her vomit has stopped. I have never been so thankful to be puked on, because this last round got all over my shirt and was NOT bloody. I'm still wearing that vomit-covered shirt because I am so relieved that it is not blood. Miracles happen, we've witnessed one tonight. Some of the words of the blessing were: "We rebuke the Destroyer and command the bleeding to stop." I'm grateful that I was able to give my daughter a blessing when she needed it, and that within minutes of my call there was a fellow Priesthood holder (and dear friend) there to help. The power of the Priesthood, to act in God's name here on earth, is great. Not sure what tomorrow will bring, but so grateful to have these girls resting for now. The Savior healed when He was on the earth and He continues healing by the power of His Holy Priesthood today.

Robert stayed with the kids until our other amazing friend, Christy came and stayed the night.  We are blessed with amazing friends, who help at the drop of a hat!  The next morning, Christy got the girls off to school and another friend Mandy picked Hudson up and kept him for the day.  I am amazed at how well the girls did the next day.  We made sure to call the school to give the girls an update later in the day.  Their teachers knew about the circumstances and took good care of our girls!  They have such loving and amazing teachers!  

Once we arrived to the hospital, they checked her counts with a blood test.  Her platelets were still low and so they gave her a transfusion.  The next morning they told us that her hemoglobin was low too.  (Red blood cells)  So she received a blood transfusion too.  As soon as she got blood, I could tell she was starting to feel better.  She went from a pale gray, to a warm pink in skin tone.  They told us the bleeding was likely from a ulcer caused by the steroids she has been taking.  She now takes medicine daily to combat acid.  I am so grateful for AMAZING nurses and doctors who are for my girl!  I am also grateful for the love and prayers of so many.  We feel them and we are strengthened by those prayers.

             This was the day before we went to the hospital!  I love that my girls are so creative!

                                                    Ainsley receiving a blood transfusion.

                                                       The next day!  Hooray for blood!

Playroom fun!

The view from our room.  I love Oklahoma!

This is one of the games we play to pass time when we are in the hospital!  We walk ALOT of laps around the hospital halls! 

Ainsley has been doing well since we have been home.  I have kept her away from large groups of people and out of stores.  I am pretty nervous that she will get sick.  We go back on Wednesday to see if Ainsley's counts are high enough to start the next phase of treatment!  We are 9 months down in a 2 1/2 year journey!  Pretty crazy:)

Blessed (Written over the summer)

 Tonight I layed, snuggling with my Ainsley in her hospital bed.  (She is receiving her last high dose of methotrexate!)  Tears rolled down my cheeks as I rubbed her back, and massaged her achy legs.  I am just SO grateful to be her Mom.  Ainsley is such a brave little girl.  I am so grateful that she was given strong spirit!  I know she will beat this, but watching her suffer is so painful.  I wish I could take away her pain.  I love my little bestie!
  I am also so grateful for my not so little family.  I am blown away with how much each of the girls have grown and matured.  Comparing this year to last year is night and day.  Last year, school was such a source of anxiety and now, it is something they love.  They have had to face some tough challenges, and they have done amazing.  I am so proud of my big girls!  Mr. Hudson continues to be nothing but pure joy to our entire family.  My friend even thinks he gives the perfect courtesy laugh!  I just think he know how hilarious Bryan and I really are!  Let me not forget my amazing husband.  He is my best friend.  I cannot imagine going through this without him.  He has so much stress and pressure to deal with on a daily basis, and yet he continues to be a rock for our family.  I am such a lucky girl!
 

Jumping Hurdles!!! (This was written about 2 months ago:p)

Ainsley has really jumped some hurdles in the past few months!  The biggest hurdle, being able to take her medicine!  She is such a champ!  She talks through how the process will go.  Then she takes a few deep breathes, and tells me "It's no big whoop, right Mom!"  And I say, "Right, you got this!"  A few more deep breathes, and then she will plug her nose (cause that helps her not taste the pill:)  and viola!!!  Down the hatch it goes!  Now, it has not always been this smooth.  Taking her meds, has been one of Ainsley's greatest challenges.  At first it would easily take 30 minutes to get a pill in her.  There was lots of crying and screaming and throwing up.  (Then we would have to repeat the process:(   But over the past few months she has slowly realized her own strength!  Instead of 30 minutes, it was taking more like 10-15 minutes!  She is champion of changing the subject and trying to make me laugh so that she can hold off on taking her meds!  She also yawns a lot.  I think it is a nervous thing....  Now, she will say, "Let's just take my medicine now so I don't have to worry about it!"  She is such a strong and courageous little girl!

Ainsley has also moved on to the next phase of her treatment.  She is in interim maintenance.   She has had to get some pretty rough drugs:(  The side effects have been body aches, hair loss, puffiness, hunger, and roid rage.  The steroids are slowly leaving her system, so hopefully she will be feeling a little more in control in the coming week.  Over the next month, we will spend a lot of time at the hospital.  Thankfully, only one over night though!  My Dad is coming to help out next week and then Bryan's parents will be here for a little over a week.  I am so grateful for our sweet and supportive families!  Here are some pictures from the past few months!

                                                            Ainsley's favorite pizza!

                                                       Mommy and Ainsley being silly:)

                                                 Ainsley and Boden (Besties!!) at the zoo!

 A common scene at the hospital!  Bryan has been amazing with working, helping at the hospital and taking care of things at home!

Ainsley and I LOVE to play I spy to pass time at the hospital!  "I spy with my little eye...."

We also love to play in the sun room!  We play the "guess which animal I am" game!  Thanks to a sweet friend Cheryl for teaching us!

Rapid Fire Update

Months . . . It's been MONTHS since I've been able to write an update about Ainsley.  This has been partly due to time, but mostly due to emotion.  For whatever reason I just haven't been able to go there...maybe more on that with another post.  For now, I'll just go for a rapid fire update.  

In June we had an amazing experience with the Angles for Ainsley's Army barrel racing event that my friend Carmen and her fantastic crew put together for us!  Over 150 horses came to run the barrels.  Our neighborhood and church friends went ABOVE and BEYOND in ways we never imagined.  Tubbs and Steed families, and so many more, we cannot thank you enough!

There were many highlights from that day:  Friends, horses, prayers for my baby girl...  One new friend drove Missouri to support our girl!  She was in the hospital and we were hoping to get her home in time to "see her horses run" as she had been telling us for months that she wanted to see.  That morning things didn't look very promising, but by that afternoon, and thanks to some fancy footwork by the nurses and doctors, she was able to be out that afternoon.  She arrived just after the last horse had run, but she didn't know the difference.  There were still horses in the arena and she was full of smiles.  Then, a fellow cancer survivor and barrel racer brought her horse over and asked Ainsley if she'd like to ride.  She led her around and you couldn't wipe the smile off of Ainsley's face.  She looked down, patted the horse, and said "this is awesome!"  Here's the picture of her on the horse.  As you can see, she came STRAIGHT from the hospital.  

A few weeks later we got to see fireworks!  Here in Owasso, they have the big firework show the night before the 4th!  It is AWESOME!!!  It's like Christmas Eve, it adds a whole other day to the celebration and gets you into the right mood for sure!  On the 4th of July we went over to our friends, Andy and Sarah, and had our own firework show, along with almost everyone else in Roger's County, where the high-flying fireworks are legal.  We had hours more fun!  Finally on July 6, we got invited to another firework show put on by some friends that run a firework stand.  They were firing off some of their left overs.  Ainsley was in heaven.  We held the drawing for the gun raffle that had been going for the few weeks before!  

The rest of July was a blur as we finished our preparations to move.  The lease on our home was finishing and we needed to lease a new place.  Now August is gone and we are in another house that better fits our day to day needs.  I'm so thankful for the many miracles along the way that made this move possible, especially in the short time-line that we had.  Many thanks again for the angel hands that have helped us in our move.  The kids are now in a new school and doing well.  

A couple of weeks ago we got to go to the PBR (Professional Bull Riders) event in Tulsa thanks to the Turn Tulsa Pink organization.  We got to see JB Mauney ride Bushwhacker!!!  (Reportedly the best bull in history and unridden since 2009).  It was exciting!   As we walked out at the end of the night, a kind stranger walked up and handed us a hat signed by all the riders that night!  It was a fun evening for us all.  The girls and even Hudson were troopers and stayed awake through it all.  

That picture wasn't meant to be a QT advertisement, but it looks good doesn't it?  Last week was a major accomplishment for Ainsley's battle with Leukemia!  She finished the 4th of 4 in-patient Methotrexate treatments.  Those are the weeks that have been the hardest for us since the first month of treatments.  Each is a 4-5 night stay in the hospital.  Thankfully Grandma Sue was able to be here for most of them and I was only on call for 2 of them.  The next round of treatments will be more outpatient based and only require a few overnight treatments.  There will be more at home medications as well.  

Today :) 8/7/13

A wise friend told me not to stress over "catching up" on the blog.  She said, just start from today!  That took some pressure off me!  Bryan has been really busy with work again, and has had some pretty big changes happening to his program.  He told me that he is having a hard time wanting to write.  He doesn't know why, because at first it was very therapeutic to write.  So, now you guys get to hear from me!  I am definitely to as eloquent, but I get the points across!

So, starting from today, we are finally in the hospital for Ainsley's third of four rounds of high dose methotrexate.  The common sided affects of methotrexate are mouth sores.  I'm not sure what is "normal", but she seems to get two or three bad mouth sores each treatment.  She has also complained of her legs aching.  I noticed that her right foot has started turning in much more than before.  The doctor says that the chemo can affect the muscle on the front of her leg, which then causes her foot to turn in and sometimes we might notice that she drags her feet.  I have been trying to help Ainsley stretch her legs and ankles and feet, so we can keep those muscles loose.

Bryan's mom, Sue, was able to be in town for this round of chemo.  We are SO grateful for all the sacrifices she and Terry, (Bryan's dad), have made!  Now that today, I have filled you all in, I will do another "catch up" post!  Ahhh.....  I feel so much less pressure!!!  Thank you to everyone for your continued love and support.  This is a long journey, and we SO appreciate every thought, and prayer!  Also, I would love to hear stories about how Ainsley's Army has given you strength.  If you have a story you would like to share, I would love to put it on the blog.  You can email me at btsmedley@gmail.com.  You put Ainsley's Army in the subject line!

I (Jenny), wrote this about a month after Ainlsey was diagnosed....

I have so many titles that could work perfectly for the feeling I have inside of me.  Here are a few to help you get a better idea of the week I have had!

"It's my way or the highway!"
"Count your blessings!"
"Padded room for one, please!"
"I'm so sorry, I'm so sorry, I'm SO sorry."
"Tomorrow is another day!"
"It's the small things."
"Angels on earth!"
"I think God was thinking of the wrong person when he sent this challenge our way!"
"Cancer affects us all."
"Thank heavens for Hudson!!!"
"Cancer sucks!!!"
"Ainsley is the bravest girl I know."

Tumultuous, in a word, is the feeling I have inside me.  I have felt like I have been failing, at every responsibility I have.  Thank heavens Becca was here for the beginning of the week, otherwise, I really may have needed a padded room!  She is so amazing at helping me see the positive in myself.  I know that my sweet HeavenlyI am quickly seeing how much cancer has affected our whole family.

Car Show, Concert, and Craziness!

First thing's first:  Tuesday morning we went in for Ainsley's bone marrow aspiration and to be admitted for IV methotrexate (4 day admission).  You would think 3rd times a charm, right?  Wrong.  In order to start the next phase of treatment she needed to have platelets above 75 and ANC (absolute neutrophil count--aka her immune system) above 750.  3 weeks ago the platelets were 7 and her ANC was 0.  The next week her platelets were fine, but the ANC was only 100.  Last week the ANC was up to 300.  Yesterday it had climbed, but only to 638.  So, again we had everything packed and arranged for admission and got sent home. 

My mom (Grandma Sue) has been here for the past 3 weeks helping us!  LOVE HER!  Thank you Grandpa Terry for sharing her with us!  The original goal was to have her here for 3 weeks, which would get us through 2 out of 4 of the next treatment cycles.  Instead, we didn't get any of the treatments done!  Oh well, sometimes the best laid plans of mice and men... We are sure grateful she has been here, though.  We don't know how we would have made it through the past two weeks without her. 

The good news is that since Ainsley has not been able to have another round of chemo for a few weeks, she is feeling as good as she has felt in a while.  She is starting to regain the weight she lost over the past 2 months (huge relief, because once the steroids stopped, so did her appetite).  She even got to finally ride the birthday bike that she got and that Trevor put together for her while she was initially hospitalized.  She has had a ball!

We had a visit the other day from Kayla, with Emmy's Heart.  She brought tutu's for the girls!  They LOVE them!!!  Ainsley wore her tutu all weekend!  She felt like a princess.

Over the weekend, our friends the Steeds/Tubbs families got a booth at the Collinsville Hogs n Hotrods car show!  We are overwhelmed by the outpouring of love and support we received.  The bracelets and head bands were good, but the 22 rifle and box of 22 ammunition were a HIT!  (They are being raffled off--Ainsley is drawing the winner on July 5th).  Randy, thank you for arranging that!

The most touching thing about the car show was the people that we met.  If you have been following the news lately, you will see that the people of Oklahoma are AMAZING and will do anything that they can to help you!  We had total strangers praying right there in the street for Ainsley! 

We want to give a special shout out to the Herron Crown Opry House in Collinsville, Oklahoma.  You have never seen such kindness and generosity.  Jenny and I got to attend their country music show Saturday Night.  They even raffled off a beautiful guitar on Ainsley's behalf.  All I can say is if you are anywhere near...you need to go see their show!  http://www.herronscrownoprytheater.com/ for more details.  The next show is on Saturday June 22.  If you are coming to the Barrel Race, you can go to the show right after.  It is just down the street.  Rick and the "Main Street Opry Band" put together a great evening.  While we were there, the band prayed for Ainsley.  We were so touched.  We got to see Allie Colleen perform.  Look out country music...she is AMAZING and we look forward to watching her for years to come.  There were so many people that were so kind and generous in thought, word and deed.  I know that they don't want to be singled out, so I won't.  But suffice it to say, there are amazing people in the Collinsville/Owasso area. 

Here are some of our favorite pictures from the past week:

The Barrel Race is Back On--Saturday June 22, 2013

Here is a map from down town Tulsa to the Collinsville Arena as well as an announcement.

Link to the arena information:
http://www.cvruc.org/ 

It's FREE to get in!  So come bring your whole family and share this!

The Waiting Continues

We were all ready and geared up for the next admission on Tuesday morning, but Ainsley's white blood cells had other plans.  Her system is still too low to begin the next phase of treatment.  It takes a lot to get prepared to be in the hospital for 4 days, so it is a roller-coaster of emotion and effort to get things ready and packed, arranged for the other kids, for Jenny and I, pack Ainsley's bags, Hudson's bags, coordinate which of us will be staying with her when...(I hope my highschool English teacher is reading this, because that was a run-on sentence like no other) 

As Jenny, Ainsley, and I drove away from the hospital on Tuesday we talked about that roller-coaster.  Last week, I felt a let down and Jenny felt almost relieved.  This week that changed, and I was the one that felt relieved and Jenny felt let down.  At least we weren't both down at the same time right?  As we drove away Ainsley laughed and said (with a HUGE smile) "See, I told you guys I didn't have any bone marrow today!!!"  That girl keeps us laughing!

Next Tuesday we will try again.  The good news is that she is making platelets and red blood cells.  Now if we can just get those healthy white cells to grow...

This is a picture of our dear friends the Biorns!  Oklahoma Strong T-shirts and Ainsley's Army bracelets!  Very fitting for what the State of Oklahoma is facing as a whole and for what we are facing with Ainsley.  We love and miss you guys and are so thankful!  This picture put a HUGE smile on our faces!

Ainsley got to go to church today and she loved it!  She stayed on one of our laps the whole time except for when she got to go up and "fish" to choose the next Primary Song.  She slept for about 1.5 hours of the 3 hrs.  It was so nice to have the whole family back together at church.

Tuesday will be another attempt at a bone marrow sample and then 4 days in hospital for IV methotrexate.  Words is this one will make her more ill than others have, and it has to be monitored much more closely (hence the 4 day admission).  If her numbers aren't high enough then they delay it another week, until she climbs back up.  Once it starts, she'll be inpatient in the hospital for 4 days of every 2 weeks for two months. 

Otherwise she has done well so far.  She is excited for the Barrel Race, which has been rescheduled for June 22.  Saturday ended up being beautiful by morning, but it was the right call to cancel because the horses wouldn't have had a safe arena due to mud, local rivers were in flash-flood warning stages, and we'd still be pulling cars, trucks, trailers, and probably flip-flops and lost shoes out of the mud bog that would have been created in the parking-lot (translation=field).  It would have been messy.  Hopefully this will also give us time to give a sample into what the silent auction will entail, because I will be honest, there have been some pretty amazing things donated that I think you are all going to LOVE! 

Barrel Racing Postponed

Hey Everyone! 

We are sad to say that the recent downpours here in Tulsa/Owasso/Collinsville areas have left the rodeo grounds too saturated to carry on with tomorrow's Barrel Race for Ainsley (June 1, 2013). 

Announcement will be made in the near future for the rescheduled time and day.  Thanks for you support! 

Ainsley's Army

Not Quite There Yet...

Ainsley went in to the hospital this morning for a bone marrow biopsy, lumbar puncture, and to be admitted for 4 days of chemotherapy.  She was brave!  But when the lab results came back, her marrow wasn't producing enough to start on the next part of the journey.  So we have to sit in a holding pattern and try again next week.  Each new round of chemotherapy will deplete her bone marrow in an effort to slow the reproduction rate of the cancer cells, but if it gets knocked down too far, then it cannot grow the normal blood cells that you need.  That means we have to wait another couple weeks at least to find out if she is in remission or not.  We were so hoping to get the sample today and find out the answer in the next few days.   It is all just part of the journey! 

Today, while preparing the hospital bag for a 4 day admission, Jenny packed 2 hair combs.  We laughed as we tried to figure out which of the 4 of us might need a comb? 

Angels for Ainsley's Leukemia--Benefit Barrel Race

A friend of mine is putting together an benefit barrel racing event for Ainsley!!!  Thank you Carmon!  It is taking place at the Collinsville arena.  Here is the flyer!  Please share and pass it around to friends and family.

Admission to the event is free.  There will be concessions, bracelets, and a bake sale, so come and add some calories to your midline ;-)   There will also be a silent auction.  The exhibition rides will take place between 900 am and 1100 am.  The main event starts at noon and will carry on through about 600pm.

Please share this and send it around.  Come and enjoy this great day.  Bring your family!

A New Haircut

Here they are!  BEAUTIFUL!  (but I'm the biased husband and father...but come on, you know it's true!  These ladies are GORGEOUS! ;-)  This actually happened last week, Mother's Day.  Ainsley decided she wanted to cut her hair and wanted Jenny to as well.  Jen didn't miss a beat and out came the clippers.  Looking good ladies!  That night, Ainsley asked me if I would cut my hair as well, and I said of course!  So here's the new look for me:

The haircuts were an interesting process.  Ainsley had stated many times over that a bald head meant boy.  So we weren't sure how supportive she would actually think it was for Daddy to cut his hair with her (although I wanted to!)  She and Mommy had talked about it for a couple of months now and they looked so beautiful when it was all finished.  I was greatly relieved when Ainsley asked me to join her!  Thank you to all that have joined her, she has loved seeing the pictures Uncle Jeff, Uncle Talmage, Doug, Tanner, Braydon...Sharp looking fellas!

The other day her platelets dropped to 7k, the lowest they have EVER been.  They were normal (100k to 300k) on Friday and by Tuesday they were 7k.   Remember that platelets keep you from bleeding, so she started having the same types of bruising that she had when they first diagnosed her.  She was doing a bit better with a transfusion and they were up to 25k a few days later.  Still not enough, but an improvement.

On Saturday June 1st, from 9:00 am to 6:00 pm, there will be a charity barrel racing event held in Collinsville (10 minutes from our house) to benefit Ainsley.  We are so grateful to Carmon and Cindy for putting it together.  FREE attendance...so bring your family and watch.  I'll post the flyer some time soon on here as well. 

Honest Feelings

Alright Moms and Dads out there...you know the situation:  ___ year old daughter walks in with a clearly disgruntled look on her face and you ask "what is wrong Honey?"  She continues to scowl at the world and says, with a slight bobble of the head, "Nothing."  My response is usually some variation of:  "Well, tell your face that."  It doesn't necessarily change anything, but it seems to make me feel better ;-)

So Thursday night, I got a taste of my own medicine.  Things were pretty hectic around the house, I was finishing a call shift and was falling asleep trying to help Meili with her homework, and something spilled on the couch.  Perturbed, I got up to help clean things up.  As I came back to sit down, Meili said, "Daddy, are you ok?"  I quickly said "I'm fine" and I saw in her eyes that similar look that I give her when she brushes my questions off... So, I stopped, looked her in the eyes and said "Mei, everything will be fine, but I'm feeling pretty down right now."  She smiled and gave me a hug.  It was a nice moment with her and actually felt pretty good to admit that the burden felt heavy. 

Ainsley and I are in the hospital.  She had another fever.  She's on antibiotics, IV fluids, and is perking up.  She had been getting treatments Tuesday, Wed, Thurs, and Friday.  By Thursday night she was pretty wiped out.  Friday they gave her a blood transfusion and more chemo.  By Friday night she was back in with the fever.  We are hoping to go home tomorrow.  

We just learned that for the months of June and July, Ainsley will be hospitalized for 16 days.  So far most things have been outpatient, with a few overnights.  This marks a big shift because it will be 4 days in a row, then a week and a half off, then 4 days, repeating throughout the 2 months.  

I heard two quotes the past few days that I have really liked.  I'll attribute them to the people that I heard them from, but they may have told me who they heard them from and I just forgot.  1) Mandy wrote Jenny and I a very uplifting letter.  We loved reading it.  She and Trevor are such great friends to us.  She said "the grass is always greener where I water it."  Simple and true.  2) Tiffany and I were chatting and she said  "it's none of my business what other people think of me."  It made me laugh.  

St. Francis Children's Hospital pulled one of the most brilliant moves I have ever seen in life this week:



Yep, those are the window washers!!!  They have been here all week washing the windows!  Coolest thing ever.  So here are our 4 super heroes:  Ainsley, Spiderman, Batman, and Hulk Smash!  Can't wait for the windows to be dirty again!

 

Ainsley's Battling On

Well, it's been a week and a half since our last update.  Ainsley was admitted to the hospital last Tuesday night for a fever.  She ended up having a mild pneumonia and was discharged on Thursday.  I was on call for the week, so we are so grateful for the friends that helped out (even in the middle of the night!)

About the time Ainsley got out of the hospital, I had to leave to go to a conference in Dallas that lasted until Sunday night.  Today, Ainsley is back in the hospital for the next 4-day treatment cycle.  She gets to go home tomorrow and then comes back for out-patient treatments on Friday and Saturday.  The march forward continues.  She is definitely a tough girl.

She still has her hair!  It's very thin and short, but it is still there!  Definitely enough for her to twirl!  We'll see how long it lasts, but we haven't needed to cut it yet.  It's definitely the simple things.

While I was in Dallas, our amazing Becca came from Arizona to help Jenny!  What a life saver!!!  Honestly, we wouldn't have made it without her!  You are amazing Becca, thank you for loving our family!  And Happy Anniversary to you and your awesome Hubby!  AMAZING family, dear friends!

Last, but not least, we are happy to announce that the new wrist bands have arrived!  If you already ordered, look for them to arrive in your mailbox in the next few days.  We haven't forgotten you, thanks for being patient and thank you so much for your support!!!

Favorite Pictures and Videos

Hudson's smile and laugh makes each day brighter!

 Rhyan and Kennedie, BFF's, at Rhyan's Baptism.  Notice the ROCKIN' baptismal dress cake courtesy of Mandy the Great!

 Best Nurse EVAH!  Thank you Nurse Andrea!  You brighten our day!

Uncle Jeffie surprised us and came for the baptism and baby blessing.  Ainsley's port was accessed, so she wasn't able to actually get into the water.  She sure had fun splashing her feet, though!

Ainsley wanted a white pony ever since she saw Berkely's.  Sweet Sara and Andy turned the world upside down to find it for her.  I think the final count was at least 3 Walmarts and I'm guessing close to 100 miles.  You guys are amazing! The smile on her face says it all!

 Here's Daddy and Ainsley having a snuggle.  Notice the Ainsley's Army bracelet and surgical scrub cap.  These memories and feelings are priceless I tell you!

Sweet Sister Kile coming to cheer up Ainsley by playing games with her! 

A Renewing Weekend

Friday morning was quite a start.  Ainsley had to be out the door by 715.  She was anxious about going to the hospital and "getting poked by the needle."  She was also very anxious about getting the tape removed at the end of the day.  So, waking up, getting dressed, getting in the car, etc were each met with a vigorous battle.  Jenny and I decided to take a 2 minute break to regain our sanity while Ainsley through a fit in the other room, Hudson screamed from his bouncer, and the other girls moaned about getting up to go to school.  It was chaos, so we just snuggled.  We talked  about the scripture "by small and simple things, are great things brought to pass."  We tried to think of what small adjustments we could make to lighten the day to day strains.  We thought of the story of the camel (see earlier post) and had a prayer in our hearts about what could be done to lighten the burden today.  Just as we were talking about that, we heard Hudson yell out "Mmmmmmooooommmmm" from the other room!  It was the first time he has made those sounds!  You would not believe the shot of energy that was for Jenny!  She shot up, ran into him and started to laugh and play with him.  He smiled and coo'd back at her.  Way to go son!  Making your Mama happy! 

Ainsley was definitely not happy about getting her port accessed, her Lumbar Puncture, and multiple chemo treatments.  But she cheered up when our friends Tiff and Sadie came to visit.  What a boost to the spirits!  Thanks for the bubbles and treats ladies! Thanks also for taking the other girls Friday afternoon/evening!  They had so much fun!

Saturday was nice.  We got up and cleaned the house.  It was a beautiful, sunny day!  We took the family and dogs for a walk through the park where the girls got to play and have a great time.   Jenny and I got to go out on a date Saturday night with our dear friends Sara and Andy.  We got to meet Sara's parents!  It was so fun! 

That night we got a call from our Stake President, President Johnson.  Bishop Davies of the Presiding Bishopric was in town from Salt Lake City for a special Stake Conference on Sunday and wanted to meet with our family.  So we got up Sunday morning and drove down to the Stake Center where we got to meet with Bishop Davies and President Johnson.  The three of us were able to administer a Priesthood blessing to Ainsley.  He sat and spoke with our family and there was such a tender and comforting Spirit there.  Bishop Davies had given a talk in General Conference a few weeks ago, and we had so much fun hearing him relate the experiences of preparing and giving the talk.  On the way to the stake center, we had discussed as a family about his to talk and the keys that he said would help us to build a solid foundation of faith and testimony.  What a neat experience we will treasure forever!  

Friendship

I wanted to share a conversation my dear friend Mandy witnessed between Ainsley and her son Matthew...

On Thursday I had the special opportunity to take Ainsley for a ride.  I was so thrilled!  For a few moments she was going to come to our house to play.  It has been just over four weeks since she has been to our house to play and Matthew was missing his friend.   We had to pickup Matthew from Joy School so we headed to Liz Covingintons house.   On the way there Ainsley and I talked about the Covington's kitties and how big they have grown since she last saw them, that we hoped they were outside so she could see them through the window of the car. She talked and I listened.  It was great.  We didn't have the radio on or any other distractions just Ainsley, Chloe and I talking about the simple but amazing things this world has to offer.  When we arrived I jumped out of the car and ran to the door.  The first thing I said to Matthew was, "Guess what, I have a surprise in the backseat of the car for you.  You are going to love it!"  He sat quickly and quietly to put on his shoes and ran out the door.  When I got to the car he leaned over to me and said, "Is Ainsley my surprise!" I replied, "yes."  " That is awesome!" was his response.   Then he sat down next to her and put on his seat belt and I began to drive.  Than I heard his sweet innocent voice say. "Your cheeks are too round.  You are not Ainsley."  My heart sank.  She replied' " Yes I am Ainsley."  "No, Ainsley doesn't have round cheeks like that." Once again came the reply, "Yes, I am Ainsley."  I didn't know what to do. I said a quick and silent prayer and then came the question. "Mandy, why are my cheeks so round?"  I explained to them in simpled terms why Ainsley"s appearance seemed a little different and then I said, "But look it is still her beautiful smile, (a huge smile came across her face) and her beautiful eyes."  At that moment Matthew gently reached over and put a hand on her cheek and said, "It is you Ainsley!"  It brought tears to my eyes.  We had so much fun that afternoon. They played like nothing had changed, except that Chloe likes to play too.  One of my favorite moments is when Chloe said, "Come play in my room." and they ran, hand in hand, to Chloe's room and came out with girl stuff.   I am beginning to understand that it is the small moments of Joy and Peace that come after the trials that make this life so worth it.  Thank you for allowing us to be a part of your journey.  

Kicking Cancer's Butt!

The other day I was holding Ainsley.  She had a huge smile on her face and looked at me with an eager grin and said "Daddy, when the cancer is out of my blood...because I'm going to KICK IT'S BUTT...then I'm going to have grapes!"  My response:  "Baby girl, you WILL kick cancer's but and let's make a list of all the things you want to do when you are done kicking cancer's butt, and we'll do them all!"  (She is unable to have fresh fruits and vegetables that don't have a peel because of the risk to her immune system if they are not completely clean.  Cooked or frozen are okay, though.)  So far, she wants to have a party at the park as well as eat grapes.

I also love to ask her:  "Hey Ainsley, did cancer pick the right girl or the wrong girl?"  She grins and says "the wrong girl...I'm gonna kick it's butt!"  Be still my heart!  What a girl!

This week has been busy, hence the absence of updates.  Monday is another dose of chemo at the hospital and then she gets a 4 day break before going back for more!  She loves those days in-between treatments.  She'll ask us "how many days till I go back to the hospital?"

She has started to get sores in her mouth, which is a common thing in chemotherapy.  The fix is a mouth rinse that she is supposed to swish around and then spit out.  She hates it.  Her ANC (body's ability to fight infections) is back down again as the effects of the new chemo regimen takes place, so she is back to wearing her mask while in public places.  She puts it on like a champ.  It's always amazes me how adaptable kids are.

We have had both sets of Grandparents in town and a surprise visit from Uncle Jeff this weekend.  It was Rhyan's baptism and birthday as well as Hudson's baby blessing.  We'll hope to update photos and such from those.  Due to precautions with Ainsley's lowered immune system and timing between her treatments, we did the baptism and baby blessing on Sunday evening.   It was a very special night and we are so grateful for the love and support of so many of you.

I guess that will have to be it, I need to go back to sleep, but realized that it had been over a week since we'd posted.  Ainsley's spirits have been up this past week, which has been such a boost to us.  Seeing this little girl get to run and play brings feelings of absolute ELATION!  What a girl Ainsley!  We love you!

P.S.  Thank you for all of your support for the bracelets.  We have a new order coming and I will let you know when it arrives.  Also, we are getting feedback that the Youth-sized bracelet is preferred by many adult women as well.  Jenny wears the youth size and Bryan wears the adult size.

Not the News We Wanted

Friday was quite a day.  I had surgeries and was on call for the weekend.  Thursday afternoon they called to tell us Ainsley would be admitted for an overnight stay on Friday.  So Superwoman (known to most of you as Jenny) got all the kids up and to the various friend's houses that they needed to be to by 7:15 am, and got Ainsley down to the Children's hospital by 8:00 am.  They accessed her port and got things rolling.  Amazing, Jenny, absolutely amazing.

I was in surgery when the doctors delivered the news to Jenny about the results of Ainsley's bone marrow biopsy.  If we go back to the analogy of the weeds in the lawn, after the first 29 days of chemo (induction phase) we should find that the weeds are gone.  This is called the "minimal residual disease" or MRD.  There are essentially 3 categories you fall into after that:  low risk of recurrence (no weeds), standard risk, or high risk (still weeds).  Ainsley still has cancer cells in her marrow, and she falls into the high risk category.  Not what we wanted to hear.  Jenny got the information on her own, and sent it to me in text form.  It was an excruciating few hours until the surgery finished before I was able to call Jenny to talk to her.  I got to stop by for a few minutes and give Jenny and Ainsley hugs, then it was off again to the hospital.  It was about 830pm before I was able to get back to them and start processing what had happened.

What it all means is this:  Before, we were swinging with a hammer to cure the Leukemia.  Since Ainsley is now in the high risk category, we will now be swinging with a sledge hammer.  Higher chance of fevers and medicine side effects, more frequent chemotherapy doses and more frequent trips to the hospital.  She'll be getting lumbar punctures 6 of the next 8 weeks and instead of just weekly visits, she'll be adding 4 days a week for 4 of the next 8 weeks.  Sledge hammer dropping.

So, it was a hard weekend for Jenny and I.  The girls had a great weekend, thankfully.  They played with friends, and our friend Cher, stayed overnight with them Friday night.  They have not stopped talking about the fun that they had!  We are so grateful that through all of this, the kids seem to be able to enjoy life, thank you in large part to the amazing friends, teachers, and primary leaders that are constantly sharing their love and support.

On a much happier note, Ainsley's amazing personality has started to come back as the steroids have exited her system.  She is back to laughing and playing.  For those that missed it, here is her response to the wonderful Zumba fundraiser held for her by our dear friends in Arizona.  Thank you Becca, Zumba Jill, and Prestige Dance Academy.  Thank you to all that attended and shook your booties!

Here's a fun picture of her with her American Girl doll, Belle.  Notice the matching pajamas, thanks to Grammy.  She was laughing with the nurses this weekend as she spent most of it in the hospital.  This girl is amazing.  She was so funny walking up and down the halls, pushing her dolly in the stroller.  She is also amazing at comforting and watching over Hudson.  She loves to snuggle him.  Lead on Ainsley!  We are following your lead and love you to pieces.

It was General Conference from Salt Lake City this weekend and we are eagerly looking forward to watching it.  We were in one (or more) hospitals and didn't get to follow it.  We know there will be some directed guidance for us.  If you missed it, take a look at lds.org

The Camel

This has been my first week flying solo! No husband, (he went back to work), no Mom or Mom in law. Just me! You will see why I wanted to share this!

My sweet and loving friend, Jaimi sent our family this letter along with a wooden camel. It was so touching to me that I wanted to share it, with her permission of course! Thank you to this most cherished family!

The camel is an interesting animal.  It is not one of the most beautiful.  It has thick matted hair that falls off in clumps.  It has knobby knees and a big hump on its back.  It is referred to as a ruminant because it regurgitates its swallowed food to chew again, and then swallows it again.  However, the camel is a wonderful pack animal.  It is used for transportation in many countries.  Camels can carry up to six hundred pounds and average twenty miles a day over rugged terrain.  They can travel in hot conditions and go for long periods of time without water.  They truly are amazing animals.  Regardless of its looks or mannerisms, a camel is loved by its master, for it is useful, obedient, and needed.

Here is the camel’s secret......Each night, at the end of a long day, the camel kneels at the feet of his master.  His master carefully lifts the burden from the camel’s back so it can rest comfortably through the night.  The next morning, the camel kneels again before His master, and the master gently places the burden on the camel’s back for another day.  He is careful to rearrange things here or there if he sees that the pack is wearing a sore spot.  This enables the camel to carry his burden for another day.

At Christmas, we celebrate the birth of our Savior, Jesus Christ.  Throughout His life, the Savior was referred to as Master.  He loves us regardless of our looks or mannerisms. He desires for us to be useful and obedient.  May we practice the secret of the camel.  As we kneel each night at the feet of our Master, may He lift our burdens that we may rest well and comfortably.  As  we kneel each morning, may we realize that He knows of our pain, our suffering, and our sorrows, for He has felt them all.  May our faith in the Lord Jesus Christ be sufficient to help us carry our burdens...for just one more day.  

Rebecca Pulliam, Aberdeen, Idaho

Dear Smedley Family,

The story above along with a camel were given to our family as a Christmas gift a few years ago.  The imagery of the Savior, our Master, lifting our burdens as we kneel before Him was so powerful for me that I have chosen to leave the camel out all year long as a constant reminder.  May the tremendous burdens placed on you at this time be lightened through the atonement of our Savior Jesus Christ.  May your faith in Him and His plan bring you peace and may angels here on earth and from heaven surround you in your time of need.  We love you more than we can express. Our thoughts, prayers, and love are always with you.

Jeff, Jaimi, Summer and Gracen

This is sitting on my our fireplace mantle, permanently!

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.