September is CHILDHOOD CANCER AWARENESS MONTH

For those that actually still read this... Oh my, Oh me....I can't seem to get caught up on life and definitely not on this blog. There's so much I've missed on posting about and I really want to go back and add so much. The furthur behind I get, the less I want to do it. Anyways... I debated whether to add these.  There so sad, but they do bring awareness to children's cancer. Mostly it's hard to forget about some of these times, but I'd really rather. On the bright side it does show how far we have come and we are done with the hair loss and steroids and continue taking chemo pills everyday along with treatments every 4 weeks.

 

 

 

For now: September is Childhood Cancer Awareness month and I've been busy spreading some awareness. I think I'll be glad not to try posted something on facebook every few days:) To me: More awareness does mean more funding and more funding does mean more cures. Our Curesearch walk is coming up in two weeks, September 29th for anyone that wants to join our team to raise money for children's cancer research we welcome you!

The amazing part of CureSearch for Children's Cancer is 100% of the money raised goes to fund and support children's cancer research (other organizations less then 3% goes to the children). CureSearch supports clinical trials (which Avery is part of) for the children's Oncology Group (which Primaries Children's is a part of) In the last 40 years, the overall survival rate for children's cancer has increased from 10% to 78%. Yay for improving, but at CureSearch, the goal is 100%. Every day 36 children are diagnosed with cancer, 7 of those will not make it. The average age of children diagnosed in six. More than 40,000 childeren undergo treatment for cancer each year. Cancer is still the leading cause of death by disease in children.

 

Go to www.curesearchwalk.org/saltlakecity then search for Team Avery Bravery. We are currently in 7th place out of 70 teams and have raised over $3,000. Go Avery and all her supportors. We are kicking cancer's butt! Look how amazing she looks! This is what I want to remember!

At our last appointment on Tuesday, June 26th, Avery's ANC was 2700 and all other blood counts looked really good. Dr. Wright wants to see two months of high counts before she ups her chemo again, especially because she had about 6 weeks off of chemo in maintenance due to low counts. So we are still at 50% dose. This is actually where standard treatment kids are, but we randomized on the high dose so it's half dose for us. Because we can no longer take steroids I think it may be good to get her at a higher dose. She has been handling the pills really well. At this appointment, we had another lumbar puncture and the regular chemo in the port. I video taped her LP, her doctor is so nice to let me.  She was nervous for the LP, but did so good this time and was so brave. We brought Bridger and Landon home with us to stay for a week then off to our annual 4th of July camp-out. We are loving having a life this summer and are adjusting to living again. Getting out of the survival mode and enjoying spending time together as a family as been nice. Avery is doing so well. Here's her prayers she said the night before going to primaries.

Please bless we'll have a good day today, I mean tomorrow
Please bless I won't be nervous at the hospital
Please bless I won't be nervous for my back poke
Bless we'll drive home safe with Bridger and Landon
Bless Kelsi and grandma
Thank you for our food
In the name of Jesus Christ
Amen-

And really she was so brave!

Maintenance trip #6

Since Avery was diagnosed we were never admitted until maintenance. That seems crazy, because maintenance was suppose to be so much better. We are on too much chemo so we keep lowering it until her ANC goes higher.  We've had 3 hospital admits  for fevers and counts (ANC) under 500.

We had an appointment to see the bone doctor. Avery got x-rays of her knees, legs, ankles. The MRI was taken only from hips down and the damage was found in her upper legs. He said the x-rays looked good. He was hopeful that with her being so young that the blood vessels would start blood flow back to the bones in her legs. He also thinks we caught it early because the bone damage (osteoporosis) was not near the joints, knee or hip joints, which is a good thing. Then she got chemo in her port. Her ANC is 800 so it hasn't increased much, therefore we are still at 50% of oral chemo. She did so well.

Avery's feeling so good, probably the best she's felt yet. Still on 50% chemo and NO steroids so that's a big part of it. She had stomach pain for about 3 days only at night for a couple hours, nothing like we use to experience, but I still just hate to see her hurting. We leave tomorrow for an all week journey to Miss Utah when Avery is being a Little Miss to Miss Iron County, Crystal Cardon then on to Camp Hope! The little boy we took Christmas too (but who we never met) passed away Saturday night. It just breaks my heart. Another cancer mom made a video of him and took pictures for his mom. I know this will be something she can cherish always. It was good  to see the video to finally put a face with his name. He is no longer in pain, but I never want to know how hard (hard doesn't even begin to describe what it would feel like) that would be to lose one of your children. We know are trial is minor compared to so many others. Hugs your babies real tight!

Today:
Avery said, "Mom, do you know what hurts"?
Mom: No what hurts?
Avery: Nothing, Nothing hurts, that's what hurts.

Yay! For that, we love these days and hearing this! We have loved being off chemo, although we know she needs to get as much as her body can handle the next 15 months to lower her chances of this ever coming back so I've been anxious to get those counts up and start back up on her chemo pills. She has been off all chemo for two weeks. Being off the steroids (due to the bone damage) aka little devil pills makes a huge difference in our life and her pain level mood/hunger is so much different now. Without the steroids, it makes a 25 less pills a month difference. That's a huge change! Home Health came yesterday to see where her counts are. She missed the first time, but was good to re-insert without Avery noticing.  I've been wanting to try to access her port, but Avery says no way. I think she just wants me their to hold her hand while she squeezes mine. She doesn't want her mom giving her pokes. Their have been times at the doctors office that if I know how it would have came in real handy. Their was a time that primaries was going to teach Johnny & I because at first home health had so many misses in her port.

ANC: 600 (this hasn't changed since our last blood draw 9 days ago) I'll have to add the other counts later, don't have exact numbers right now.

Her oncologist decided to still get her back on her oral chemo. The dose will be at 50% which means: 1/2 pill 6MP Monday thru Friday, 1 pill 6MP Saturday & Sunday and on Thursday 6 pills of methodraxate. When we started maintenance she was on 12 pills then after her counts dropped so low for a month, we went to 9 pills, now 6 pills. We will see what this does for her numbers next week at our next appointment. We are ready to figure out where her right doses of chemo needs to be.

Overview of our Week

Monday: Already posted...run Avery to doctor for her ear pain., had Home Health do a CBC a week early to check for dropping counts. Was able to look up results on my computer and know she would need a blood transfusion. The results explained the headache and how tired she was.

Tuesday: I took Avery to practice for her program at school for 45 minutes. Her infection fighting cells (WBC) dropped (ANC 1200, now 400)  but I still took her. While I waited primaries called about her blood results the previous day. They called the infusion clinic to get the blood transfusion arranged. They also had me give them heads up we were coming. The Infusion clinic wasn't sure if they had her special radiated blood that she needs. Sometimes they have to send for it in St. George or Salt Lake, either drive it here or have it flown in. I wanted her transfusion done today so she wouldn't miss out on her kindergarten graduation. We headed to Cedar to start on the type/cross they always have to do before a transfusion.They always check her blood type and cross it with the new blood to make sure there won't be an allergic reaction. Luckily, they did find 1 unit of the right blood she needs. It's such a process. Avery wasn't thrilled to be going to the Dr/hospital 2 days in a row. She started puking in the trash can in the waiting room from being nervous. This is something she shouldn't be nervous for, but it's the hospital and she just doesn't like it. One of the princess'  from  the Fight like a Girl princess party, ordered her own princess costumes to come visit these girls when they needed some encouragement. When Bella (aka Mari) heard she was having a blood transfusion she asked if she could come visit. Avery is sometimes funny about having people be there when she has medical stuff done, so I cleared it with her first and she said it was ok. Avery keep asking, if she was going to wear her Bella costume. I said, Oh no I don't think so she's just coming to visit. Boy was I wrong and it sure put a smile on Avery's face. Princess Bella treated her like a princess and painted her finger and toe nails and brought some princess chap stick rings. This made it so much better for her and it was so nice of Bella to leave her castle and things she needed to do to come make a little girls day so much better. Thanks a ton for that! Seriously so so nice! When it was time for the transfusion they always give her benadryl and tylenol as a precaution for any allergic reactions to the blood. The benadryl always put her right to sleep. The whole process took about 5 hours. Yay.. with new blood she would feel so much better for her program the next day.

Wednesday: I went to her morning program that they put on for the rest of the Elementary with Kelsi just in case something didn't go our way. We are often reminded that cancer is still in control of our lifes and things can change at any point. I was so glad I went. Avery came home and wanted to have a lemonade stand (make shaved ice) to raise money for children with cancer to go toward our Curesearch walk in September. She's asked a few other times so I said ok, I'll call the grandma's to come over. I hurried and made two batches of rice krispies.They make $40.00. I was surprised for just the few consumers I called. I told her she better rest for awhile so she would feel good for her Kindergarten graduation. After a bit, I thought she just didn't seem like she felt good so I took her temperature. Sure enough, between 101-102. NO! Not right now! Strike one! Her pediatrician was nice and said he'd see us, run a CBC to check counts, blood cultures, urine test and then for saving time he suggested giving her a shot of recephin, because we didn't have a lot of time. She so didn't want a shot, but she braved up so she could prossibly go to her program.They miss out on so much.  Little did I know how nasty the shot of rocephin is. One of her Home Health nurses said how bad they hurt and we should have had them put lidocaine in it. The Nurse was suppose to get one once and instead choose a different method. She said they hurt. Wish I would have know that.  I thought maybe she was being  dramatic, because she wouldn't walk on it for several hours after and cried how bad it hurt. Strike two! It was already 6:30 and we would need to be leaving for her program. I checked counts on the computer and now ANC was 200. Crap! Strike three! She cried she wanted to go, but she couldn't walk her leg was hurting too bad. If she could have handled going with the leg, I would have let her, even with low counts and went to the hospital afterwards. Now we had to figure out what was next. Were suppose to go to the ER and would be admitted for fever and counts under 500. Johnny called the on-call oncologist and explained the situation. She said we didn't have to rush because she did get that dose of rocephin, but because of the fever plus low counts we still needed to go. We took our time, non of us wanted to go and especially Avery. We had everyone packed, had sent the kids with my mom and was heading out the door to go to Cedar. I decided to call and talk to them again, her fever was completely normal and I just wanted to ask who we could refer the ER Doc's to call. The On-call oncologist had changed since Johnny called, so you have to explain things all over again. She said if I felt comfortable waiting and either go in in the morning if her fever stays away or if she fevered in the night go straight to the ER. I felt bad that this was just one more thing we missed (even though in the scheme of things it may sound minor), but when Avery is sick it doesn't seem to bug her even though she so wanted to be their. Which is a good thing! It was so neat in the morning program when they did the slide show and it got to Avery's picture all the kids cheered for her. I was touched. Also we watched the video from the night performance and when the teacher announced Avery had gotton a fever and had to go to the hospital everyone cheeered for her.

Thursday: No fever in the night, but started with the dreaded fever at 7:30 in the morning. It never was over 100.5 this time. We headed down to the ER to run all the test. One was an x-ray and Avery thought it was cool to be able to see her port underneath her skin. Again, such a process and takes so much time. When her counts came back, ANC was still 200. Avery's oncologist wanted to admit us. With all the tests all they found was she had the rhino virus, which is basically the common cold and is the same thing she tested positive for the time we were admitted in March. I don't think her cough/cold ever went away. When her counts are so low it's hard to fight anything off. Her fever broke by noon and never came back, but we were admitted to get her antibiotics and to make sure her fever didn't return in the 24 hours. Nothing grew in her blood cultures. Again, Princess Bella came to visit at the ER and brought along Sleeping Beauty and Prince Erik. This is something Avery will remember. This girl has a great memory and she often tells me specific things from a year ago when she was diagnosed or even random things when she was 3 or 4 years old. So grateful they came! Things like this help her focus on all the good and forget about the bad.

Friday: Home from the hospital! Yay! She needs antibiotic's every 8 hours though her port instead of having home health come every time, Johnny and I give them to her. Our supplies for home health come from St. George and they couldn't be in Cedar by then, so we had to stay at the hospital until her next dose at 2:00. Really the night before she was so sad when we thought we were going to the hospital that night, but the next day when we had to go. She wasn't thrilled, but honestly when we got all settled in for the night. She was so pleasant, silly, sassy, and spunky too. She teased and laid on the hospital bed like a princess. I told her their are perks being at the hospital, you get special one and one attention from both mom and dad and treats and we can play games without mom needing to get something cleaned at home, or needing to take care of Kelsi or Carson. I think she was enjoying herself and did wants to push the nurses call button to ask for things. She still wouldn't eat at the hospital. Not even popsicles or a shake. We finally got to come home. We were suppose to be heading up to SL today for a service project for Miss Utah on Saturday. Also to get Avery's crown and dress for Miss Utah coming up in June. I didn't tell Avery too much for this exact reason we never know. I thought seriously about getting up at 5:00 in the morning and still going. However her counts are still tremendously low and we had just got out of the hospital, along with having to administer antibiotic's through her port. Johnny definitely disapproved and I thought we'd better not risk it. Thanks for all who show your concern for our family and continue to pray for us. It means a lot!

Her request at the hospital was OREO's! Of course, Uncle Kyle brought her some!

Blood Transfusion

Today Avery had a blood transfusion.  Avery's counts last week at Primaries were ANC 1200, WBC 1.6, RBC 2.85, HGB 8.7, HCT 26.1, PLTS 168. I know for many all these numbers don't make sense, but I like to have them written down.  Her RBC was getting low then so they decided we'd check counts again in 2 weeks instead of waiting until her next appointment in 4 weeks. On Saturday, 4 days after clinic she kept complaining about having headache and was tired. We went to my brothers house for a BBQ, but she didn't feel good, had headache's again and went to lay in the truck and wanting to go home. We finally left. On Monday, she had early morning school to practice for her Kindergarten program and when I picked her up she told me that she was so tired practicing singing at school She said she had told one of the teacher's helper she knows that she was so tired and couldn't keep her eyes open. After school, my mom wanted to take her for a treat and she ended up falling asleep at her house for 3 hours. The light finally went off and I put the headache and her being extra tired together and wondered about her counts being low. She came home and cried about her ear hurting, so I headed to Cedar with the baby, who had been tugging at his ear and had coopy eyes that I thought needed eye drops to help and Avery to get things checked out. While I was there, I called primaries to see if we could do a CBC a week early. I didn't want her missing her Kindergarten program. Her ear looked red and he gave us some drops, but it hadn't developed into an ear infection. The baby had an eye and ear infection. The fun never ends:) Primaries did order a CBC that I insisted we do that day and not wait until the next day, so she could still make it to her program in two days. I know if she needed a blood transfusion there wouldn't be time until the next day and it can be a process to get her special radiated blood.  Home Health did awesome accessing her port the first time, but then forget to put heparin in the line until I noticed, so we had to re-poke her for that. Avery was a trooper.  By the time I got home, I could get her results of her labs on the computer. Primaries was already closed, but her counts did come back lower and I know we would be having a blood transfusion the next day.

Counts just 6 days later:
ANC 400, WBC .6, RBC 2.25, HGB 7.2, HCT 21.1, PLTS 102. Anytime with an HGB under 8 (Normal 11.5-13.5) and HCT under 24 or 23 (Normal 34-40) they typically transfuse. Of course you want their own bodies to build up those red blood cells, but sometimes they get too low before that happens. Her white blood cells are dropping too and fast. Crazy counts they can change so fast. Her ANC went from 1200 to 400 and you can't transfuse WBC your own body abilities need to start making more of the infection fighting white blood cells.

#5 appointment on maintenance=Avascular necrosis

I'm so not a writer and often I go on and on and on. lol...but I really want Avery to have a record of her cancer journey so I've got to get better at updating. If anyone reads this. I really want to make a video of Avery's journey this last year or pictures to go with the song that was written about Avery from the song of love foundation,  but I don't know how. If someone can do it, help me or teach me that would be great!!

Last night, we got home from our 5th appointment since we started maintenance therapy. We first had a scheduled MRI to check to see if the steroids she takes every month has been causing bone damage. She has horrible pain while on steroids and for several days after and periodically throughout the rest of the month. The doctor had scheduled her to be sedated. When the imaging department called to give me instructions and ask questions about Avery I asked if we could try without sedation. She has a hard time waking up, hates the way it makes her feel, it gives her headaches and sometimes she throws up afterwards. I got all the details about the MRI, how much of her body goes into the tube, what it looks like, if we could stay or not, how long she'd have to hold still, if she could watch a movie, etc. She likes to know exactly what to expect. I told her she could decide if she wanted to be sedated or not. I was in favor of the NOT. We still followed the no eating and drinking rules in case she changed her mind. As we were driving to the hospital she must have started thinking about the hospital because she started puking and dry heaving. I feel so bad she worries so much. I encouraged her to talk to us about what was bothering her and really she didn't need to worry it wasn't going to be too hard and I knew she could do it. I asked if she wanted to say a prayer and ask Heavenly Father to help her relax and not to worry. She quickly agreed. She didn't throw up again and her nerves were so much better. I was so proud of her as we had to go through all the steps to get ready for the MRI.  I couldn't be by her side or even in the room, as they prepped her for the MRI to tell her it would be alright. She had a microphone on so the radiologist could talk to her and she could talk back. She told me after, I kept saying Mom in the microphone, but you couldn't hear me.The radiologist said she did awesome and she really did. She was so brave and was able to  hold still for 45 minutes. He was so nice and let her look at the images of her bones on the computer which is something she wanted to do. We were done in record time and still had 2 hours until our appointment at clinic. Surprisingly Avery wanted to stay and do crafts while we waited, which never happens. We told her we could leave the hospital and go get her something to eat, but she choose to stay. That was a big step for her. They ended up getting up back in clinic early. When I was asking her Dr. what bone damage looked like. She pulled up the images and said this doesn't look right, but I want to wait until the report from the radiologist comes back. Shortly after she came back in our room and said she does have AVN (Avascular necrosis) caused by the steroids in her upper legs. This is a disease caused by temporary or permanent loss of blood supply to the bone. Without blood, the bone tissue dies which may cause the bone to collapse. Kind-of a sick feeling. This is not caused by the cancer, but my the medicine they use to cure the cancer. So many side effects to these medicines. And this is why we need more research for better treatment options. (I better not get into that right now) Her Dr. said she thinks we caught it early enough and the bones will hopefully repair themselves. I asked my usual...loads of questions. On one hand, it's great not taking steroids. That's a huge thing for us to be off of them as far as causing pain for Avery and making our life easier, however a little scary because they work with the chemo to keep the cancer cells away.  Her Doctor must be getting to know me, because she said I know you're nervous about her not taking them at all, but if she continues her bone damage will be worse and of course we don't want that. So she will no longer takes any steroids for the reminder of her treatments. That really it so big for us not to be on steroids and we are praying, praying that the damage can heal. We will go to a bone doctor next trip to talk further about it. Of course now I'm home I have a lot more questions about how severe the damage was. Her doctor didn't seem that worried about it, but I know of two other kids that have AVN and have had to have surgery and have effects and damage that has not healed. One mom said they've been off treatments for 3 years and are still reminded of cancer everyday because of how bad her daughters AVN is. Not going to lie it freaks me out, but I've got to quit worrying so much my blood pressure is through the roof. I'm trying to remember have Faith not Fear.

 First time we've ever heard the bell ring at clinic. We can't wait until the day when treatments are finished and Avery gets to ring the bell.

 Avery and her dad giving me their dirty looks. They are so tough!

Love, Love, Love it. Avery joined t-ball and we didn't know if she'd be able to play especially the week to two during the steroids. This is the part I love. Avery said, "Mom I can even run, because I'm not on those steroids anymore." She had the biggest smile on her face.  Now we don't have to worry about the steroid pain. Last year we let her play in her last game, but she was just coming off of her month long steroid and she couldn't run to the bases at all and of course had the swollen steroid face. It is truly amazing to see how far she has came since last May. So glad were not there anymore. Those were not good times. She hit the ball awesome and played first for an inning. I was a little worried she'd get hit by a ball, because she wasn't always paying attention when they would throw the ball to her.

I debated whether to add the t-ball picture from last year (last year I was fighting back the tears during the one game she played in) but it does show how far we have came in one year and also to remind people to not take for granted that your kids came run, jump, play, and just enjoy being a kid-they don't have to worry about needles and hospitals and being sick. Don't take for granted their health. When that's taken away and their smile is lost,  you learn to cherish the special moments that much more:)

A Little Va-Ca

Yay for family outings! We got to use our trailer for just the third time. We bought it just a few months before Avery was diagnosed and haven't had a chance to use it much. We went with my family to Springdale just outside Zions National Park and stayed at an RV park there. It was really fun. Avery felt really good and was active. We went on a riverside hike which Avery did ride in the stroller for most of that. It was about 2 miles. We went swimming in a freezing cold swimming pool. We rode bikes, eat out at Pizza Noodle, for the other meals we all took turns cooking, went to the Giant Zion Theater, went to the park, played tennis and just enjoyed some family time. So exciting to get out and play!

Cooper couldn't get close enough to Carson. These two have their own little connection.

Taking pictures with the squirrel.

Waiting for the shuttle to pick us up, to go into the park.

Love them!

Cousins and Uncle Kyle!

A year ago, Yesterday, is when we found out Avery had cancer. Tons of memories are flooding back. Those first few days were the hardest in my entire life. We had to explain to a 5 year old why she had been so sick and try to somehow prepare her, with only hours, that she had to have surgery to place her port, have a bone marrow aspirate and have her first (of many) back pokes with chemo injected into her spine. I will never forget how I felt as the nurses/doctors wheeled her down the hall for surgery and Johnny & I had no choice, but to stay behind. She was terrified and so was I. So glad we have one year behind us...1 year and 3 more months to go! Thanks to those who have been a support along the way!

 

I promise I'm going to start back tracking and get caught up!

Happy 6th Birthday!

This girl loves birthday's! And Birthday's mean so much more for us! Last year I remember so much of her birthday and it was a real turning point for me. I remember her getting out of the aquatic center water and I know by how she walked that her legs were hurting her. I kept thinking. There has got to be something else wrong...why does it hurt her to walk. We still had fun, but she did go to the doctor again that day, did have lots of pain and I gave her lots of ibuprofen. I wanted to make this one extra special for her! I told her we should do a Fancy Nancy Birthday Party! Fancy Nancy is a book about a girl who loves to be fancy, she's so posh... that's a fancy word for fancy. Her favorite color is fuchsia. That's a fancy way of saying purple. She can't wait to learn French because everything in French sounds fancy. She likes to dress all fancy and of course have sprinkles on dessert because that's fancy. Ok... I think you get the idea. When I mentioned this to Avery she was running with ideas. She wanted to have everyone dress up in their princess (fancy) clothes. Have a talent show and get in groups of three and she had asked Kyle, Becky and Sharron to be the judges. Her ideas just kept on coming.  Here's her fancy invitation! Thanks Rachelle for doing this! It saved me!

Her Dad couldn't resist getting a puppy for Kelsi and Avery on her birthday!

 I'm not much of a fancy girl, but on Avery's birthday we did some fancy things; painted fancy nails with fancy stickers and fancy colors, Becky painted some fancy flowers, stars or butterfly on the girls faces, had fancy glasses for the water, a fancy sundae bar, fancy decorations and of course the birthday guests came in their fanciest attire to help us celebrate! Avery picked out her outfit which was her skelton shirt.... pretty fancy!

I love this picture of Kelsi and Sophia squeezing each other tight!

She was surprised and excited for her new puppy she named Marley!

After her friend party I had our families over for pizza, cake and ice cream. Also we had surprise visitors coming!

Here is where her surprised Make A Wish coordinator's came to surprise Avery and talk about what she wanted her wish to be.

She was so excited to start talking about the playhouse she wants. She gets so shy around people she doesn't know. She hadn't opened presents yet and we went out back to look at where a big playhouse could go. We were awhile and she was so ready to finally be able to open her birthday gifts.

It was a good day and although I know she still had a fun birthday last year it was a day of pain in her legs and stomach coming and going. I just really wanted this one to be special for her and to let her forgot about the yucky stuff she has to do and just enjoy being a kid.

When Avery got diagnosed I never went back and told about what led up to her diagnosed and I still plan on doing so when I can. To write a year later would be difficult to express those emotions you felt right at first, but I still remember so much of it.

I never wrote about her Birthday last year. We celebrated her 5th birthday just 8 days before she was diagnosed. It was such a long, hard road before she was finally diagnosed. I think I was already emotionally and physically drained from the nearly 2 months before of her being in pain and us getting so very little sleep along with being drained from having a one year old, being pregnant and working full time. Little did I know that on her birthday last year those leukemia cells were already taking over her entire blood stream in her body and probably had been for weeks.

So glad to Celebrate number 6! She had an extraordinary (that's fancy for great) day!

After 2 hospital stays in two weeks (caused by fevers and ANC being too low), 21 days of her port being assessed, 21 days on antibotic's through her port every 8 hours, 21 days without chemo, 21 days with her ANC under 300, no school for a month, her little body has finally recovered and her ANC jumped to 1600. This is a big jump for us and is actually in the normal range (1500-8500 is normal ANC), but this means back on chemo that will drop her counts, but they never want them to drop as low as they have been and goodbye to the every 8 hours antibotic's.

Yesterday, we had her 2nd doctor's appointment while on the maintenance phase. She had Vincristine through her port. We start back on steroids for 5 days, 6mp every day and instead of 12 pills on Thursday they lowered it by 75% and she'll have 9 pills every Thursday. Yesterday was probably one of our better appointments. She teased and interacted more with our favorite nurse Tricia and it went fast. They are so good there and we will be forever grateful for their care and devotion to helping Avery get better. Avery did have to change her clothes to go in the hospital (she won't wear the clothes again that she wears in the hospital)  and had to have a bath as soon as we got to Rachelle's house, but she did so well.

Happy times:  We did stop at Make a Wish to start declaring her wish. Fun times. I will finish writing about this later.

Fever+Low ANC=First Admit to Cedar's Hospital

Since I last wrote a few hours ago, she now has a fever between 99 to 100.3. It is getting so close to the point we may need to go to the hospital.  I don't know what is causing the fever especially since she is on a high dose of antibiotic every 8 hours. We are continually checking. We are hoping/praying this goes away and fast.

Her fever rose 101 to 103 range which is super high- super concerning. The magic number for us is 100.4 and then we start making calls to the on-call oncologist. We can't give tylenol or ibuprofen because it will mask a fever and we need to figure out what infection her body is trying to fight off. She knows when we are checking her temperature all day what may happen. We headed to the ER, which was super busy. She's so neutropenic (little immune system) that she stayed in the car until a room was ready.  Then just the usual..CBC, blood culture, they started us on two new antibiotic's called gentamicin and zosyn. Which currently, at the hospital she is receiving again through her port. They did a chest x-ray, tested for RSV, strep throat and other viruses. No results yet. ANC surprisingly came back at 500, however today it's down to 100. They think last night was not an accurate reading. We will most likely be staying the night again.

We did stay a second night and was able to come home today.So far she didn't test positive on any of the test. Another unknown reason for fever. Her ANC is now at 300. So improving. We give her antibiotic's every 8 hours through her port and head to Primaries in a few days for another appointment.

And I thought this whole maintenance thing was suppose to be a little easier and let us feel a little bit of normalcy for her and us. So far, not so!

Still low counts

It's hard to find time to update this but...quickly I'll say after two weeks in confinement her ANC is still too low to resume any oral chemo. This makes over two weeks now. Basically home-bound no school (a huge thanks to her teacher for coming over to teach her this last week), we have rarely left the house and Grandma's have came over here to watch my kids while I went to work. Last Wednesday was my last day at work, so it makes it a ton easier to take care of Avery's medical needs and my other two small children. Since we were hospitalized two weeks ago, home health comes over every Tuesday and Friday to draw blood. So home health nurses don't have to come three times a day, nurse Amber or nurse Johnny have been giving her antibiotic's through her port every 8 hours. Over the last two weeks, her ANC has went from 200,100,300,200,200. It needs to be over 500 to resume any of her med's. On Friday her RBC dropped a bit as well.Today she is exhausted and has had more complaints about pain. I think the antibiotics hurt her tummy as well. She played hard yesterday with her friend Abi and that probably wiped her out. They make up games and Abi is so good to play along.She has came over a lot this week and it saves us. I think she's getting use to us and all the santizing

Yesterday, in Avery's room they brought the beach to our house. They found sounds of waves on a beach to play on the computer. Put on swimsuits, filled buckets with water to put their feet in, laid out blankets and towels all over, one bed was a sand bed they said the other they put cold packs from the freezer underneath the bed spread and said that was the water bed. Sometimes the mess drives me crazy, but I know how important it is for kids to use their imagination especially when your home-bound and they were totally entertained for hours. They get along so well.

Abi told me Avery was telling her how bad she hates cancer and last night she again got in one of her moods where she feels bad about herself. I just hate it. I try to be so positive on this blog, but also be honest. This is our life day in and day out. And besides our constant worry and stress, I hate what cancer has taken from her childhood and not only her childhood but Kelsi's too. I hate that it has taken away her innocence. I hate how it make her feel and how she worries about treatments and procedures. I hate that constantly something has to hurt. Although with no chemo, this has definitely been a break for us. Just crazy at the same time because then you worry about them not having any chemo and low blood counts. Last night, she sadly talked about how that girl (I've mentioned the story before) called her a boy. She said I dress like a girl, but people think I'm a boy. Sometimes I get so choked up when we have these talks it makes it hard to respond for a minute. Her hair is growing in fast now.  I told her kids sometimes don't understand the medicine she was on and after they had the flag ceremony were they put her picture on the big screen in front that said our own honored hero and explained about blood cancers how bad that girl probably felt. I hope all this makes her such a strong girl and in life to not worry about what others say or think. But to be kind to everyone.  I worry too much about what others think and I wish I didn't.  On the flip side, a girl made me laugh when she told Avery and I, You are so lucky that they put a picture of you on the big screen in front of everyone. That was so cool. Glad she thinks so. It was good for Avery to hear. I don't think she feels so lucky.

 I will go back and update more: about our last appointment Feb. 9th, the amazing princess party and concert they did for the 4 cancer fighting cuties in Iron County, (That was a highlight and I feel bad I haven't had a chance to post about it yet)  our suppose to be fun weekend turn hospital stay, and good news. Make a Wish contacted us on Friday. This wonderful orgainization gives families something to get exciting for among all the other crap! Yay for MAW!

Day 30 on Maintenance-Feb. 10th

This trip, cousin Kayden wanted to come with us.  He wanted to donate some of his play station games to the older kids at clinic. Rochelle, the child life specialist talked to him outside of clinic and was nice to take him on a quick tour. This is kind-of a big deal because no kids are allowed in clinic except for the cancer kids of course. I think it was a lot to take in, to see where Avery has to go to get her medicine. He is such a soft-hearted kid and cares so much about what she has to go through.

I told Avery's oncologist that this maintenance had not been so great. Today she got a push of the chemo Vincristine. She is just on so many pills  and she has  repeatedly told me this last week, how everything hurts. I just think this is too much medicine. Her ANC came back at 740. Right on the border, were they don't decrease her oral chemo or increase it. Today we started our 5 days morning and night of steroids pills (Dexamethosone). Oh how we hate them and their side effects.

Johnny really wanted to go to the hunting expo after Avery's treatment. His family was driving up to go as well and had brought Kelsi. If Avery didn't feel well enough I would leave and Johnny could just ride home with them. She wanted to go, but after being in their for 5 minutes had a little attitude about this being just for boys. Of course she was tired and didn't feel that great from just having chemo. We stayed for a few hours then made the long trip back home.

Late update-Counts not high enough to start Maintenance

We were suppose to start what's called Maintenance on January 5th, but Avery's ANC wasn't high enough to start.

ANC=600, PLTS 96, WBC 1.6

Maintenance may sound easier, but I'm not convinced just yet. There's a whole lot more pills at home. We now (only) go to Primaries every 4 weeks instead of every 7-10 days! We started Maintenance on January 10th, 2011. We are on a research study that is organized by the Children's Oncology Group (COG) This group is a international research group that conducts studies for children with cancer. They are continuing to research and try to obviously cure this disease, but at the same time do so with the least amount of short and long term side effects. CureSearch is an organization we totally support because 98% of the proceeds goes to childhood cancer research. Some organizations less then 3% goes to childhood cancer research.

Two days later she starting with another ear ache. I didn't want to wait and see if a fever would start because it's an automatic ER visit. I called the on-call Dr. and he was so awesome to meet us on a Saturday, at his office and take a look. It's sad how worried she gets about having a fever. She knows that means hospital for us. She is so sick of the hospitals and was angry at me for taking her. She didn't believe me when I promised the Dr. was only looking at her ear and we would be out of there. She begged and pleaded then angering told me to have Dad turn the car around right now.

Yes, she had a bad ear infection and we got antibiotics to clear it up. At 4:00 a.m. she started with the dreaded fever of 101. We did what were NOT suppose to and gave her Tylenol to bring the fever down. I was sure the fever had to be from the ear infection and I would take her in the next day if she still had a fever. Luckily it went away and didn't come back. I think the Dr. was a little surprise that we didn't follow protocol but it all worked out. More pokes from home health to check counts, Headed to Salt Lake again on January 10th. Crazy how your blood counts can change up or down in just 5 days!

ANC=1300, PLTS 337, WBC 2.9

This was a big appointment for a few reasons. First, we decided to stay on the study so were getting randomized on the study into one of either 4 arms which are:

Arm A: They receive Vincristine and 5 days of dexamethasone (steroids) pulses every 4 weeks with IT Methatrexate (in the spine) every 12 weeks and oral methotraxate of 20 mg/m2 every Thursday. Every night they take an oral chemo pill called 6mp.  (This is currently what the protocol is for all standard Risk ALL kids)
Arm B: Same as Arm A, except instead of 20 mg of methotraxate every week they get 40 mg
Arm C:  They receive Vincristine and 5 days of steroids pulses every 12 weeks with IT MTX in the spine every 12 weeks and oral methatraxate of 20 mg/m2/week, 6mp pill every night.
Arm D: Same as Arm C, every 12 weeks, but methotrexate at 40 mg. 

We randomized on Arm B, which means the most medicine, the most often. Although every 12 weeks sounded so good and from where we had been, I knew I could handle this for the next 1-1/2 years. On the other hand, I was definitely nervous that every 12 weeks wouldn't be enough to kill this beast and not have it ever come back again. I was so dreading having to do steroids every 4 weeks. I had a little break down when Johnny went into a store, just knowing that this battle needed to continue and I just wanted so bad for her to not have to worry about hospital, needles, back pokes, bone pain, stomach pain etc and honestly for us not to have to worry so much.

So Here's our pill schedule for the next 1-1/2 years:

Mon/Tues. Septra (am and pm)
Every Day: 6mp-a chemo pill taken at night. Can't eat 2 hours before you take it or 1/2 hour after.
Every Thursday except week of lumber puncture 12 (yes 12) pills of oral methadrexate.
Every 4 weeks: Vincristine in port and start 5 days of steroids with 5 1/2 pills a day in am/pm
In additional we takes med's prevacid and zantac for her stomach. Just so many pills.

Also, this trip we also had a lumbar puncture with the lighter sedation method again. Avery just hates the days she had to have these. It's scary and makes her nervous. She had ask Johnny the night before, what do I have to do tomorrow. He didn't have the heart to tell her and worry her all night. The next day as we waited our turn to start our appointment. I told her. She seemed ok. She knows what this means. However when it came time to numb her back and start getting prepared she panicked. She was angry at me and said mom, I am NOT going to do this. She was scared and angry that I would let this happen to her. It is heart wrenching to say the least. I hate that I can't protect her from getting this procedure. It scares her. Before we would go downstairs to the RTU and get completely put out, she would say, I don't want them to put me to sleep, what are they doing to me. On this day, she said, just put me to sleep, I don't want to know what they are doing to me. Oh how I hate this! It tears me up inside! I feel like she's losing trust in me.

I love seeing this smile! We have our appointment at primaries tomorrow. It has been so crazy not knowing her counts for 4 weeks. You get so use to knowing every week where her white and red blood cells are and what her platelets are so you know how isolated you need to be. I hate for her to get a poke in her port, but so ready to know what this month of maintenance has done with her counts. She has had a lot of pain in her legs, bottom of her feet, stomach pain this week and several times complaining her eye hurts, which is something new. I picked her up from school yesterday crying as she walked to the car. When this happens you know she really is hurting, because usually she'll try to hold it in, in front of people. If her counts are too high more pills. If they are too low, they will lower the dosage. So glad we don't have a LP tomorrow!

Celebrating!

So much to write about... fun things first we had another little celebration after Christmas (Dec 26th), to celebrate that we have come so far and had made it past the 5 big phases. What a crazy, emotional and exhausting ride. We celebrated by getting an ice cream cake and all the cousins cheered for Avery for making it to this point. It says: Avery, way to go, you're kickin' cancer. When I called to order the ice cream cake, I told the lady I didn't know another word to use so just put Kickin cancer's butt, she must have thought I didn't want her to add that word . Either way she is still kickin' cancer:) Thanks cousins for helping us celebrate. Go Team Avery Bravery!

Avery's hair is starting to come back. I have to say as hard as it was for both of us to see her beautiful long, curly hair go, I had the panic's when it started growing back.  I know it may sound weird to those that haven't experienced this, but I'm going to miss that soft, bald head. Mostly, I wanted a lot of cute pictures to capture this once in a lifetime (it better be) baldness. She was completely without hair for about 7 weeks, October 7 thru the end of November.

Merry Christmas!

The best Christmas present ever....Avery felt so good. Not one complaint all day which doesn't happen too often. She had 2 chemo's through her port just 3 days before so we were worried how she'd feel. Her ANC was just 600 so we had to be careful, but we got to enjoy a lot of fun times. I love spending time with my family, all three of them are such a joy. We have survived 8 months of treatments so far with 19 months to go. My countdown on the blog page says 574 days left. Still so far to go, but glad we have a lot of days behind us. Seems like such a long time, but we reached a huge milestone and made it through the most active part of treatments-the 5 phases before maintenance. Over these last 8 months we remember all the support....the kind words, phone calls, notes, service, meals and generosity. Having people care so much keeps us going. Thank you!

Christmas Eve-Avery and Uncle Kyle having a competition to see who's hair grows back the fastest.

Avery and Kelsi spreading their reindeer dust that Aunt Catie gave them.

 Acting out the nativity at Grandma house! Carson was baby Jesus, Kelsi was a shepherd, Avery was Mary and Kyle was such a trooper and was the donkey.

    

Kelsi wanted barbie's and a vacuum for Christmas and Avery wanted barbie's and a guitar.

I love these three!

Interim Maintenance II is OVER!

We dropped Kelsi and Carson off to sleep at Grandma's so we could get up early and leave for our Salt Lake trip.  When we got home at 10:00 p.m., I had to take advantage of only one child and try to get things done. Avery had fallen asleep earlier in the night so she wasn't tired. After her dad fell asleep in her room she sneeked out and stayed up with me way to late. After only 3 1/2 hours of sleep it was time to wake up and get ready to go to Salt Lake.  Her counts were ANC 600, Platletts were 111 so she got Methadraxate, but because our ANC wasn't over 750, they didn't excelate. Instead they went down 20% of our last dose which was December 1st. I really was dreading this trip where it's only three days before Christmas and I want Avery to feel good.

It was snowing and the roads were bad until Scipio. The clinic was super busy. At the hospital we were trying to bribe Avery to drink and eat popsicles while getting Chemo. They say this can help with mouth sores. We brought are own drinks/popsicles, but it still didn't work well. Dr. Wright isn't there on Thursdays and when another Doctor came in and she heard us talking about medicines and such. She started throwing up again. More anxiety and stress on this little one.  We were there over 3 hours. After our Methadraxate and Vincristine were over, we were ready to go home. Then the nurse came in to ask if it was okay if some of the players from the Utah Jazz came to visit. Of course! Hello! I immendiately thought of my twin Kelly and how much he has always loved the Jazz. He would know everything about these players and could chat it up. Johnny and I not so much. I even like sports, but haven't watch one of their games since the good ole boys played like Karl Malone, John Stockton and Jeff Hornaceck. I had to quickly explain to Avery how cool this was. She had just finished up Chemo and wasn't feeling too great so didn't have a lot of smiles. We were glad they were willing to take time to come visit these sick kids at the hospital at Christmas. Kids shouldn't have to be there ever, but especially this close to Christmas!

We didn't get the opportunity to meet the boy who we took some presents and money too, but did see a little Christmas tree in his room, which made we feel happy. His mom wasn't there and of course with all the privacy laws we couldn't hand it to him. We left it with one of the nurses. I walked back down during Avery's Chemo treatments and the mom had came, but was talking to the doctors. I just hope it brought some joy to him today! It was fun to do something for someone else! The countdown to Christmas is on! I'm getting more excited. Glad today is over with and pray that Avery can feel so good on Christmas!!

2 days of fevers-Interim Maintenance Day 27 to Day 42

I'm trying to keep this up for a record for Avery and our family of our journey. The good times and the hard times, but I'm struggling.

Last week was some very challenging, long, tiring few days and Avery has to just take what comes.

Wednesday (Dec 7th): She wanted so badly to go to her Elementary Christmas program, but her mouth sores were getting so bad. She was having a hard time talking. She insisted she was going so I told her if she had to, to just mouth the words to the song. During the program, she was so excited when she seen Jed on the big screen honoring the soldiers. I took her to Carson's 4 month Dr. appointment to see if there were anything else we could do for mouth to give her some relief. We already have a mouth wash, but he prescribe one with numbing stuff in it. We got home just in time to start getting ready for the night Christmas program, but she was just in too much pain and I told her maybe we better not go. She felt so horrible she went with this plan. I was so glad she and us were able to watch her in the morning. I just hate she (and us) have to miss out on so much.

Thursday (8th):We did try to go to the airport to see Jed fly in from Iraq, something we were all so excited about. We went knowing we would most likely be staying in Cedar going to the hospital because she had a fever. At the airport, we seen Jed for a minute, but the crowds caused me to panic and Avery did not feel good and sleep in my arms. I sat with Avery the farthest away from people I could find. Her fever continued so we started making phone calls to the oncology office.

After seeing Jed at the airport we headed to the Doctors office for her fever. Her pedicitrian was nice and was willing to treat us there instead of going to the ER, which she absolutely dislikes. I called and arranged for Home health to come access her port. She missed on the first try. Then the normal routine every time she gets a high fever: CBC check, blood culture, give her IV fluids and antibiotic through her port. She was having difficulty swallowing at all. The sores were on both cheeks making them swollen, on her tongue, down her throat, on her lips making them bleed and underneath her tongue. This were worse then the time she got them on Interim Maintenance I. I felt so bad for her. She was throwing up. We went home and was able to see Jed again for a minute, but she was just in lots of pain. Typically we can not give her Tylenol because they don't want it to mask a fever, but where she had the antibiotic we can for the next 24 hours.

Friday (9th): Again she started fevering (is that a word?) around 5 in morning. We kept checking it and it reached 102. They want them seen if it gets 100.4 or higher. We called oncology again and she said where it hadn't been 24 hours yet we could give her tylenol again and not go to the ER, but wait until her pediatrician office opened and go there. Yay for that. We went back and did the same routine as the day before. She wasn't able to eat and throw up a lot from all the crud down her throat. Her counts were dropping. She was out of it and was so tired and felt horrible. Home health come again to the doctor's office to access her and it took three tries. Seriously. I. Hate. That. Her HCT was 20, HGB, 7 and platelets were dropping to 64. I knew we were getting to the point of blood transfusion. We were scheduled for CBC on Sunday for a trip to SL on Monday. Her oncologist said lets see what they do.  She didn't want to stay accessed, but we knew HH was coming to check counts on Sunday plus we thought we'd be going to SL on Monday. With so many pokes this week the chance of infection is greater. I told her I would pay her 5.00 to stay accessed until Sunday and 10.00 if she keep it until Monday. She was mad at me, but we left her accessed. I think after more pokes she decided this wasn't so bad and she stayed accessed until Thursday when we ended up going to SL.

Saturday: (10th)Finally some big improvement. Was able to eat, had some energy (even though her red blood count was dropping) and her mouth was looking a lot better. She was up and going, so this was a big improvement from where we had been.

Sunday: (11th) Another blood draw to see if we made counts. She needed her ANC to be over 500 and platelets over 50. I was somewhat surprised she didn't make counts on ANC or platelets. I was just about finished packing, had arrangements for the other kids, Grandma Kathy was planning on coming with us to go to a program of Landon's and boom you remember....with our lives you have to be so flexible, change of plans is the norm and you can never plan on anything nor should anyone else. Grandma left for SL by herself. Avery's ANC was exactly 500 and platelets were 46. Her RBC were still low, but holding were they had been on Thursday and Friday.

Monday: (12th) Primaries calls and said I guess you know Avery didn't make counts. Also they told me she needed a blood transfusion. The nurse asked about her energy because when your red blood cells are low you are pale (yes she was) and you don't have energy because your oxygen is low. We had seen a major improvement from how she was for 3 days. She has to have special radiated blood so they had to send for it from Salt Lake. They told me it was being flown in. Thanks to all those that donate your time and give blood. It really does save lives. So glad someone out there was able to give my little girl the blood she needs and I'll never know who that someone is.

Tuesday: (13th) We had a blood transfusion at the infusion clinic. Avery was getting discouraged and somewhat upset. This is just too much time for a kid to be at the hospital. She had had enough and honestly we are getting so worn out. So glad Miss Iron County came to pay her a visit. I so appreciated her lifting her spirits. I have no idea why I didn't even snap a picture. What was I thinking? Obviously I wasn't. Her platelets dropped to 26. A transfusion of red blood cells don't make platelets go up. If they go too low, we have to have a transfusion of platelets.

Thursday:  (15th) Back to SL to the hospital. We had to go no matter what her counts were. She got Vincristine chemo, but her Doctor said she was holding the MTX chemo due to her bad mouth sores. They didn't run a CBC to see if she made counts on her platelets the Doctor had already made up her mind about no MTX this time. Of course mixed emotions we don't want to see her that bad, but that means we go back in 7 days (right before Christmas) instead of in 10 days (right after Christmas) Not sure which is worse, but I think I'd rather after Christmas so I make sure she feels good on Christmas. Just one more thing I can't control.  I want to enjoy Christmas and try to forget about all of this and more importantly just have Avery feel good.

Also, today was our first time to try the lighter sedation method for her Lumbar Puncture. She stays some-what awake, her eyes are open, but they give her medicine to prevent her from remembering (versed) and medicine for pain/sedation (Ketamine). I get to stay in the room so that is good. She was scared and cried a bit. It was just something new, but she handled it like a champ and the doctor and nurse said she did perfectly. Good Job Avery. Love you!

Thursday (22nd): It's 1:00 in the morning and I'm adding to this post I never finished. In 4 hours I wake up (along with Avery and Johnny) to get ready to leave for yet another trip. Although we go so close to Christmas and that is for sure not ideal. We have reached a HUGE milestone. This will be our last treatment on this phase and with the most active part of treatment. We will have two weeks off! Doesn't sound like much, but we'll take it. We want to celebrate big. It has been a long, tiring, worry-some 8 months and will continue to be. We are so grateful for those who ask how we are doing and care so much. It really does keep us going. We are just so ready for life to slow down even just a little bit. I don't want to look back and forget this time with my other children. We are excited for this big milestone and want to plan something pl. Any ideas?

As Christmas is so close! We again are reminded of those generous people that do nice things for us. We appreciate everyone's support! At times, you feel so isolated in this "cancer world", but then someone lifts our spirits again. We had a loud knock on the door and there were 3 books with a jar of money. So nice! Or someone knocked and when Johnny answered they handed him a card and ran. He was literally speechless. Part of me wants to know who they are, so I can thank them.  But obviously they don't want us to know and who knows maybe they'll know of our appreciation by reading this.

We want to pay it forward in some small way and are excited tomorrow to take some presents to a 4 year old boy tomorrow who will be staying in the ICS for a long time (this is where we stayed for a week when Avery was first diagnosed). He has relapsed from AML and he is alone a lot of the time. The staff sit with him at night, until he goes to sleep. I can't imagine Avery being there at the hospital by herself.  It breaks my heart.

Thank you to ALL!

Mouth Sores-Interim Maintenance II-Day 28

Early Morning of Dec 8th: It's 3:00 a.m. and Avery finally went back to sleep, after getting enough courage to swallow her medicine. It causes her so much pain to swallow. I can't go back to sleep. She can't eat, is hardly drinking and has had her head in the tiolet or trash can more then once tonight (or should I say last night). This chemo methadraxate again has caused her to have severe mouth sores in both of her cheeks, on her bottom lip and down her throat. It hurts her to even talk and her voice is so raspy. It is causing her so much pain that I can't help but wish, I could take this pain from her.  I hate that there is... Absolutely. Nothing. I can do to make it go away, but comfort her and tell her I'm sorry as I watched her have to suffer through this. I think of others that have a child with a long term illness, longer then 21/2 years, some a life time of taking care of them or of those I know that have had a child they have lost. I have seen a glimpse of their pain and want to help them even more.

Watching her in pain, I think in some small degree this is what it felt like for our Heavenly Father to watch his son suffer on the cross. It had to be intolerable, yet he endured it. Tonight also reminds me of another night I pleaded with Heavenly Father to please make her pain go away. That I couldn't take it anymore, I couldn't take watching her in so much pain. I had a strong impression that he too has a hard time watching her in pain. And again that night I thought of him having to watch his only begotten son suffer too and Can I even imagine how hard that must have been?

Avery I hope you know what an inspiration you are to me. I have never heard you feel sorry for yourself. Never say why do I have this or why do I have to always be sick, but know of your disappointment at not being able to go to your Christmas performance tonight. Although it was painful, I'm so glad you got to go this morning and we were there to watch.

I think back at a few stories you told me in the middle of the night when you couldn't sleep. I was so impressed by your responses I got up at Rachelle's house and wrote them down so I wouldn't forget.

The first....You went to your cousin's family get-together for a birthday celebration. Kids there didn't know you and out of curiosity ask why you didn't have any hair? You told them you had cancer. They said, "I feel bad for you" Without hesitation you said, well...what color of hair do you think I had? Their response. Orange? Red? Brown? I finally told them black. Then I told them the story of what happened. I slept at my aunt's house and my legs hurt really bad. Then awhile later I slept there again and my legs hurt. Then Justin said (her Uncle) you should go to Primaries and they figured out I had cancer. Although not exactly correct. I liked that she gave Justin credit. Maybe him helping/giving her a few priesthood blessings which eventually led us to primaries left an everlasting impression in her mind. I was so proud of how she handled this situation.

The second.....Avery said, "At school a 1st grader said, Are you a boy"?  This broke my heart as I've been there before and seen your face drop as someone has said something similar before. I asked her what did you say?  I said, "No I'm a girl I just have cancer and take medicine that makes my hair fall out." Then you said that Saydee started getting so mad and said she is not a boy. Good ole Saydee will stick up for you anytime. I'm not going to lie, this one crushed me,  but I was so proud of you. I found myself even a little mad that this kid would say that, but I know kids aren't afraid to say what's on their mind and mostly aren't trying to be mean just curious. I told you kids are curious and don't see many kids without hair, but I was so proud of how you handled it.

Avery I am so proud at how strong and courageous you are. You have to do more scary thing then most kids do and you handled the situations perfectly.

I have to also say....your dad once said it sounded like I do it all which I would never say is true. He doesn't like to be in pictures, he doesn't like to update the blog and doesn't like to leave comments, so it's my thoughts and stories that get written, but know for sure he has been there, By Your Side, Every Step Of The Way and a lot of times when I can not . Every picture you'll ever see or every experience we've had through this journey he too has been there and has had a lot of emotions that only he can describe.

Before this 3rd treatment of this phase (Interim Maintenance II) you had a great week, maybe even two. This is a comment your dad left on the blog so I'll post it here. Johnny's words...So I just got off work and lying here by Avery and thinking what she told me the night we got home from salt lake she says dad I don't even feel like I have cancer any more I just feel normal. Pretty amazing for someone to say just hours after having poison shot through her veins or chemo. Avery you are a very strong little girl keep up the fight and I'll try and keep up with you love dad.

It's now 5:02 a.m. good night or should I say good morning? We are suppose to meet Jed at the airport at 7:30 from being in Iraq since June.  I'm afraid...she may be disapointed again. She (we) are so excited to see him and for him to meet Carson.

Oh crap....her temperature is 100.5 right now PLEASE no ER visit.