Another Friday done!

Wow...What a difference a week makes! On Friday, back up to primaries for Chemo & another back poke (lumbar puncture). Avery has been a whole new person this week, compared to how bad it was in the previous weeks. Her stomach has hurt, but compared to what we were dealing with, it is so much better. When we asked Doctor Wright, her oncologist, yet again about going to Yellowstone, she encouraged us to go & said it would be good for her. We have had this trip planned 2 years ago, but 4 out of the 5 of us siblings were having baby girls that summer so we decided to wait. She has been so miserable we didn't know if we would go. Now off the steroids she is getting her personality back & then some. She's been so funny lately!

On Tuesday (24th) was the first time she noticed her chubby cheeks from the steroids. For her little body to get hit with so much Chemo & Steroids in a month, she was miserable & I guess never noticed her cubby cheeks. It's funny because while she squeezes her cheeks she keeps saying, "Why do I have these chubby cheeks"? And "Where did I get these chubby cheeks or she'll say "When are these chubby cheeks going away"? She doesn't get sad about it, just says it in a funny way over & over again. Yes she still has those chubby cheeks, but her swollen feet & legs and her swollen & hard tummy have gotten so much better. Her belly button is back to normal and she's been able to walk so much better. Since her appointment the week before which was the last time she had her steroid medicine she has lost 5 lbs which is so big.

I can't describe how great it is to finally see her smile again, to giggle which she has done a lot of this week , for her to get her cute personality back & to be nice to her sister again. Kelsi really needed this. I'm dreading when she has to be on steroids again, but embracing every good & happy moment I can. A few days after we stopped steroids I heard her giggling late at night in her room. I couldn't miss that. Johnny was ready for us to quiet down & go to sleep, but there was no way I was stopping her from being happy & laughing. We have seen no or very little of this in a month and it was so good to see her smile.

Good News: Her bone marrow test came back from the week before & her cancer is .001% undectable. This means her cancer is in remission. This is exactly what they wanted & of course what we wanted. PCMC test the cells in the bone marrow & then send them to Seattle where they have even more specialize equipment to look for any abnormal cells. However, if they were to stop treating her now, the cancer would come back. So we spend the next 2 plus years doing treatments to make sure they get ride of all the abnormal cells & to make sure the cancer doesn't come back.

Clinic took a long time because they had a hard time getting blood to withdraw from her port. They figured there was a clot in her port, so they gave her medicine called (TBA) to brake it up. The day before, home health came to draw blood because our visit was count dependent. This means if her counts weren't high enough we wouldn't start our next phase of treatment called "consolidation". She was not excited about getting poked, even if it was at our home. The first home health nurse couldn't get her port to withdraw blood. Avery was a little hysterical, which I'm sure didn't help. The nurse withdrew the needle & we had to wait until her boss could come & try. It went a lot better the second time. Jed, Cait, Becky, Kyle & Saydee showed up & it must of helped because she did a lot better. Her counts have dropped, but were still good. ANC went down from 2800 to 900; WBC was 3.7 up from 3.5; RBC was a little lower 2.48 from 2.92 & Iron was lower 8.3 now 7.8. Her HCT was 23.8 down from 26.8. They were lower, but they felt good about them so no blood transfusion.

The lumbar puncture went better then last week. Not that that would be hard to beat. She didn't have the severe adominal pain & wasn't bawling with hunger like last week. The nurse didn't even get yelled out this time when she woke up from sleep, so it was definitely a better experience.

For the next month, we go up to Primaries every week, but one. This is really getting so old & hard to make the drive every week, but we know we have to do it. She had Vincristine (Chemo in her port) and now for this month we give her chemo by mouth every day. Every time we go up to SL this month she has another back poke, which she is not a fan of, but again we have no choice.

Becky told Avery if she was brave then to call her in Beaver & she would get her paints ready & come paint her face. This is something she has wanted to do for a long time. She kept asking if we were in Beaver yet. This little girl doesn't forget. We had some fun with the paints. Avery painted Kelsi's & Avery & Saydee painted Becky's & mine. Good times!

Today, Dane Leavitt, a member of the fifth quorum of the seventy, came to visit our family. We appreciated his encouraging words & concern for our family. It was neat to have him in our home.

Fun Times!

I was so glad that Avery was feeling a little better and we could go and enjoy some fun just for her this weekend. It was so good to see her smile again. I have missed that more then anyone could know. It was lots of fun listening to the Bottled Monkey Band. We also went to the bank to put all the "Coins Against Cancer" into the slot to count. Thanks to all those that helped & contributed and for giving my little girl something to smile about!

Also...Thanks to the owners of Fun Time Inflatable who on Memorial Day brought the bounce houses to the park for anyone to come & enjoy. It was their memorial day fundraiser. When the owners Rick & Cathy called me to see if they could do this for Avery. I wondered if Uncle Kyle had something to do with it. Avery was refusing to take her medicine & we were struggling to get her to accept having to take all her med's. Kyle was over and he told her he would do anything she wanted if she would just take them. She said ok, I want you to bring all the bounce houses to my backyard. So when a few days later they called to see if they could take their bounce houses to the park for Avery, I was sure Kyle (aka her child life coach) had something to do with it. Kyle said he'd mentioned that story to a few people, but didn't think it was him. When I asked, they said the girl from La Villa (where Avery craved their chicken flauta during the steroids) was engaged to their son. This weekend was the best she has felt so far & the most we have gotton out of the house. So glad to see her up & walking. It was so nice for her to have a chance to forget about her sickness & have some fun. The steroids are finally wearing off. Yip-pee!

So of course I think that lots of good can come out of any bad situation. I'm sure there's lots that Avery may not remember about her struggles & bravery with battling cancer, but I do want her to remember how many people cared about her & wanted to help. To try & teach her the selfless act of service & anytime someone can make her feel special then I am so grateful for. She has had such a good week & when I told her about this today, then she was all for going. It's crazy to me that someone that doesn't even know our family, but heard Kyle bore his testimony (Kyle can I say this) & had been looking for a family that was dealing with cancer wants to do all this. For me, I'm humbled & anything to make Avery smile again I cherish. So tomorrow at 10:00 behide Taste of Hawaii in Cedar they are having the band, Bottled Monkey play and doing Coins against Cancer. Another time, besides 2:00 a.m. I will have to tell about how today at the Hospital (now yesterday) went:)

So this week we have had lots of improvement! It was an emotional one for me, because of seeing her feel a little out of place, or having limits on what her body will do & just seeing her not being the typical more carefree, head up little kid that can run & jump that she was before all this. Or the sadness she feels & I feel watching her start to lose more & more of her hair. It's hard for me to watch this, knowing that she already feels like her illness is limiting her & setting her apart from her friends. Losing her hair will also be a physical reminder for her that she is really sick. I was so hoping that maybe by a miracle she could keep her hair. And although I think she has more then some kids do at this point, it's really starting to come out more & more every time I brush it or coming out on her pillow and clothes. She's a brave little girl & I know we'll get through this, but for a girl that has always had beautiful long hair I know it will be her challenge, therefore it will be my heart ache. They say the number one fear for little children who receive a cancer diagnosis, is not their own mortality, but is actually losing their hair.

A big thanks to Saydee who made Avery feel more comfortable & helped her up the steps, during their Pre-school graduation practice. This was the first time we have been back to school since she was diagnosed. Her feet have not been so swollen & she felt like she wanted to go. I thought this would be good for her to be around her school friends. I couldn't hold back the tears (nor could Becky) when these two came walking out holding hands & the song, "Let them be little" played. Especially since are conversation a few nights before was how she didn't want to grow up. She wanted to stay five. I think she's afraid by the time she feels all better she will be grown up. Like I said, an emotional one for me, but I think this was so good for Avery to be around her friends again. Saydee I'm so glad she has you to help her through this!

This week was the first time she's even mention tee-ball, which she was signed up for before we knew she had cancer. When she mentioned she wanted to play, then we took advantage since this would be her first game & the last one for the year. She was hesitate, but with a little encouragement she went out in the field. Her legs are still swollen & so it made it hard to walk & for sure she couldn't run. She hit the ball both times she was out to bat & again I think this was so good for her to be around kids her age again. We are so blessed to have you Avery. You did a great job!

Bake Sale!

So when Kyle told me that some of Avery's cousins wanted to do a Bake Sale for her, I thought maybe a little Lemonade/Cookies stand. Lots contributed & it turned into more then that. And I know that people paid more then those treats were worth. That was so nice & I love that these cousins rode their bikes down main street holding up a sign for the bake sale. So Cute!
Thanks to all her friends & family for the fun gifts & cute letters that have been made for her. She loves them & we keep them all.

Lets see if tonight can be an "Anniversary Miracle" and I can complete a post before Johnny gets back from picking up the girls. Today was the second time we've been to a store, besides in Parowan, for a month. It was our 8th Anniversary today, although before all this, we had talked about really planning something fun for us to actually get away since we rarely do. But plans change & we were lucky we put away the guilt & left to at least go to dinner. Happy Anniversary hubby-Thanks for helping me & all of us get through this!

Went to Primary's again last Friday (May 20th). Avery had her port accessed to draw blood. To our surprise no Chemo today. They are giving her body a break before they decide the next month's treatment plan. Yeah for that! Also, this Friday was our last day for steroids for awhile, double yeah for that. After, we headed downstairs to the RTU for her bone marrow & lumbar puncture procedure. The bone marrow results will tell us how much of the cancer is gone & this will determine what risk category she'll be put in. The hope is the cancer is less then 5% in remission. The Doctor think she'll be standard risk & this is what we're praying for. Avery couldn't eat until after her procedures & this was a big problem due to her increased appetite at all times. We made it through the night with her wanting to eat twice, but the next day she just cried to eat. Her stomach was hurting from hunger & just the usual stomach pain. When she woke up from anesthesia she was ticked & I mean real ticked. This time I didn't warn the nurse & it was not good. She yelled a lot at them and said some not so nice things. I don't know if I should mention some of those words.... okay I will remembering the "Roids" make you a whole different person. (stupid,ugly & dumb) Once the nurse turned & walked away so she could laugh, so at least she took it good. I kept telling Avery, "okay that's enough", but she was so mad & thought they had hurt her stomach. I tried to explain they did nothing to her stomach, but had poked her back. The nurse said she understands, some wake up from anesthesia aggravated, besides her being on steroids & hungry. My phone battery was dead or I would have recorded it to at least find humor in it later. We headed home & after food & pain meds she started feeling a little better. One more week down. What a brave little girl!
Numbing her port before Clinic

Measuring her-
Cleaning her port before access.
All finished!

Hungry & drawing blood for more tests.

So hungry! Please hurry & put her to sleep.

So mad at the Doctors she called them, really the nurses. So, So Mad.

Things Avery has said Lately:

Avery: I wish I didn't have this.
Mom: You wish you didn't have what?
Avery: This!
Mom: Cancer?
Avery: Yes
Mom: I wish you didn't have cancer either, but you are so brave & such a fighter.
Avery: Sadly says, but I can't even run or even do the splits anymore.
Mom: When you feel better we'll both start running.
Mom: How long do you think "this" is going to last?
Avery: 265 days (Me only thinking; it's more then doubled that, but at least she doesn't think it's only for 5 days or even a month)

*Driving up to Primary Children's Hospital Avery says I hate these vacations. (Really so sad she thinks this is a vacation)
*Those steroids really are something else. There are lots of horrible side effects, but here's some things that have changed in regards to her taste buds & appetite.

*How Avery describes cherry sprite: Spicy
*Avery now thinks eggs are: Gross & Nasty (use to love what she would call "eggs with the good stuff")
*Use to love Strawberries, but more loved the sugar she would put on top, Now she says, "Sugar is Nasty". This one still gets me-I never thought I'd hear her say those words.
*Milk-Loves lots of what she calls "Ice cold milk". Before, I had to work hard to get her to drink any milk.
*Craves-Chicken Flauta's, Salad from the Red Barn, Ice cream, Gogurt's, Pizza and for a week always wanted Shane's bread sticks. (yes, Shane is the maker, but I'm glad Greta has taught him to throw in healthy ingredients. He uses wheat flour & flax seed; for the sauce it has spinach & carrots) She loves those bread sticks!
*Dislikes: Right now her sister Kelsi, kids crying or anyone being loud. I recorded one of her "Roid" rages. So glad that she is finally off of those!
*Describes her feet & legs that hurt so bad for her to walk as: Squishy!

Exactly ONE Month Later-So many changes in our lives!

1st Pic: Taken April 16, 2011 2nd Picture: Taken May 21, 2011

*AMAZING- How things can change in just 1 short month. One month ago today, is when we were told the news at Primary Children Hospital that Avery had Leukemia. That first picture was taken just 5 days before we would hear the news. I remember that day I took her picture very well. She was getting paler, still had no energy & was taking naps everyday. She went to a wedding with me, but really just wanted to go home. That day she wasn't in a lot of pain compared with what we have had to deal with, but her Aunt that hadn't seen her in a while called and said she looks so pale. We had a family fast for her that the blood work we had done on April 15th, would come back good & we could get some answers on if there was something else going on with her besides the bowel problem we had been dealing with. Five short days after I snapped that cute picture, we would learn that she had Acute Lymphoblastic Leukemia.
*AMAZING- What our 5 year old has had to endure in such a short amount of time. Looking back, I know how awful it was for us to hear the news & can imagine how scared she must have been. I hope she felt some comfort that day. We were given very little time, until we were checked into the ICU to even explain to her what was going on. The IV team was there before we could really sit down with her & try to help her understand. What a brave girl to already have gone through so much in a month: getting a IV in her hand, getting her port installed under her skin, 2 bone marrow procedures, 3 spinal tabs (lumbar puncture), 3 rounds of chemo in her back, 5 rounds of chemo in her port, taking steroids for a month. Dealing with the severe abdominal pain, the swelling, puffiness, weight gain, discomfort, misery of steroids. And just trying to understand all this. We are ecstatic that she finished up her last steroids yesterday. The purpose of the steroids were to work with the Chemo & kill cancer cells. She will have to be on them again, but not for this long. Yip-pee! Let's Celebrate!
*AMAZING- all the people that have been so great with our family. So many have provided such service for us, so generous with us & care so much. So thank you for that!

*With all that's going on I have a hard time updating this, I will try to do another post about our day at the Hospital yesterday.

End of Week Three!

This has been another challenging week. Avery's feet swelled up last Friday on our way to Chemo (May 6th) and have stayed that way all week. Her stomach pain has been bad & she'll cry and say she can't take it anymore. She says her feet & stomach feels squished & hurts bad. Her feet and hands are numb & tingle. This week it has been an accomplishment if she feels like walking anywhere even to her bedroom. She's gaining weight & puffy all over from the steroids. The steroids have definitely increased her appetite, unlike the several weeks before we found out she had cancer, when she hardly wanted to eat. The steroids help (along with Chemo) t0 kill the cancer cells. Along with killing the bad (abnormal) cells it also kills the good (normal) cells. This is why her immune system is compromised. The Doctor's also say it's good for them to gain weight in preparation for the upcoming months. She's hungry all times of the day and wants to eat in the middle of the night. The steroids are still making her crazy at times, right now is one of those yelling times. We will be so excited for her to be off the steroids in 6 days or 10 more doses.

The highlight for the week was to see her smile which is a very rare occurrence these days. No she didn't laugh or have a big smile, but a little grin several times throughout the play the H.S. put on called, "You're a good man, Charlie Brown". It's hard to make plans because how she feels changes with each hour or even each minute. She actually wanted to go, but it was off, then on again whether we would go. Her stomach was hurting and she was so mad that her everyday cowgirl boots wouldn't fit & hurt her to bad to wear because of her swollen feet. We left with no shoe's & had to carry her because it's so painful to walk. She did enjoy the play and I loved seeing her smile during the funny parts. That made it all worth it and really was the highlight of the week. So thanks to those who put on the play and dedicated it to Avery.

Friday (May 13th) we headed back up to chemo. She was able to sleep a lot on the drive which was nice for all of us. Chemo and drawing blood took only about 1-1/2 hour, mostly it's just a long drive. Her counts were good. Although, it's still not fun and she says she hates this place, they are fast to access her port. She still cries and squeezes my hand. Johnny would prefer to leave the room so he doesn't have to watch. He has been amazing through all of this and I'm so glad he's willing (or maybe he doesn't have a choice) to let 3 girls boss him around. Keeping 3 girls happy, especially under these circumstances can't be easy. For all of us, but for Johnny it was really hard to understand why this had to happen to a little kid, especially his little girl. He was sick to his stomach for weeks and still is at times. It's the first time I've seen such emotion from him. Avery really depends on him & Kelsi doesn't want to leave his sight either. Always saying, "Daddy go"? Kelsi bawls if anyone leaves the house and doesn't take her. She's sick of being cooped up in the house all the time. We try to take turns taking her outside.

When it does seem a lot to bear; I think of the other families & all they're going through that we meet at Primary Children's. The 2 month old; that is so young & doesn't yet have a strong immune system, who was diagnosed with AML, another type of Leukemia. He has to have a bone marrow transplant and the chance of a sibling being a match is only 25%. This baby & mom (who also had a 2 yr old to worry about) would be at the hospital for at least a month, but closer to 6 months; The family who found out their 3 yr old boy had ALL the same day we did, the father was in Iraq. He could take a 10 day leave of absence. The wife was there for the first few days dealing with it all by herself. She also has 5 other children to take care of & her husband is in Iraq & unable to help. Or my heart goes out to a stranger who worked at Primary's who was 7 months pregnant, had 3 other kids, and unexpectedly died leaving her children & husband without a mother or wife, along with losing her, they were unable to save her baby.
I know I have much to be grateful for. There has been so many acts of kindness, service & generosity shown to our family. We are indeed blessed with so many people that care.


Pic #1: Rachelle, the child life coach, trying to distract Avery while the Nurses get the Chemo ready & get ready to access the port.
Pic #2: In the stroller afterwards feeling like leaving the room for a minute after Chemo.
Pic #3: Drawing pictures while we wait for her blood counts to come back. You can see why I cherish any smiles I can get.

The last few days have been an improvement which were very thankful for. She has sleep a lot & her pain as been more bearable. Theirs been a few times she has wanted to leave the house or even the couch. Maybe only for 20 minutes, maybe an hour, but we take advantage of these moments.


Pic #1: Shane teaching us how to make that delicious bread dough she's been craving. Two thumb suckers, one binky girl that tugs at her hair when she's tired & one beautiful girl that we can't wait until she gets her smile back.
Pic #2: Mom trying to help her feet feel better by giving them a soak. Yesterday was the first time I heard Avery say the word Cancer. She was wearing her Relay for Life shirt and said, "We walked for other people who had cancer uh mom. When do they walk for me? We love you Avery!

Locks for Love Baby!

The plan: To have a mommy & daughter hour to help Avery trim or cut her hair to deal with the upcoming months. If she wanted to cut her hair, then I would cut my hair. She said she wanted it trimmed, but she was not cutting her hair. Also, to get her fingernails & toes painted to help her smile.




The Thrill: Becky loves to chopped people's hair! You say, "Okay Let's do this & Boom it's over.

The outcome: Becky said, "It made her day chopping our hair off". I had enough hair to cut 10 inches to donate to "Locks of Love". Shortest its ever been. Maybe I could help someone out & make it not so scary for Avery.










The results: Two hot babes and one unexpected cut from Catie. I left the Salon, Avery never got her hair trim, she was in pain and too tired. Catie, my Sister-in-law, was having her hair slightly trimmed & colored. Then I received this picture. She decided she wanted to be part of the "Short Hair Club too". Love it Catie! Thanks Becky for the chop & Catie for the support:)

Avery getting her nails/toes painted.








Puffy & Swollen feet, but still cute!






She's done! Nails & Toes painted & she's exhausted in the Pedicure chair. She's woke up spent & in pain, no hair cut or trim today!