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:)