Super Star!

Kyle, with the help of his friends, tied this John Deer quilt for the new baby. Very nice! I loved it! Oh and a big shout out to my Baby Bro for the big 3 to the 0 birthday tomorrow. Thanks Kyle for all your support and for lots of surprises for our family. Hope you have a fabulous Birthday!

What do you remember?

There's just something so special about newborns. They stare in wonder land and I have often thought if they could talk they would have some fascinating things to say and could tell us all about the other side. I think the vail really is thin when they are babies and it's a time you feel the closest to heaven and our Heavenly Father. As they get older they forget, but I 've asked Avery before what she remembers about heaven! When I was preg-o with Kelsi just 2 years ago, Avery was 3-1/2 & I would ask her if she remembered her sister in heaven. After 8 ultra-sounds some were still convinced she was a boy:) So I would ask if she remembers a little sister or brother in heaven? The other day I asked Avery: Do you remember baby Carson in heaven? Do you remember playing with him? Here's the things Avery said she remembered! She said that.....

Saydee told her.... Come over here and she held my hand. (That sounds right)
Bridger said.... I'll see you soon! (That makes sense, he was born just 6 months before her)
Kelsi just gave me a big kiss. (She does love to cuddle & have loves)

Mom: Wow you do remember things. What about Carson? Do you remember a baby brother in heaven or maybe baby Carson is really a girl? Avery said, well I did see a lot of babies in heaven, but I just don't remember seeing Carson.

That confirmed it... (Not really), but Johnny has been wondering if this new baby really is a boy with our luck lately. A week after Avery was diagnosed with cancer, Johnny backed our car into our truck (awesome) and a few weeks later, the morning that Dane Leavitt (quorum of the seventy) came to visit, Johnny walked downstairs to find our basement had flooded from a pipe in the ceiling. Water was coming from our ceiling in the laundry room, paint peeling off, water was in the laundry room, storage room & family room (awesome). So he's a little worried that getting rid of all the girls clothes & making Kelsi's room (now Carson's room) masculine could be a problem. Now on bed rest, my Dr. wants another ultra-sound. So this Thursday, since Avery obviously can't remember everything about heaven, we can confirm that Baby Carson is still a boy:)

There's so much your kids say that is so easily forgotten, but is so cute. I did write down another one of her sweet prayers.

Dear Heavenly Father
Thanks for my blessings & this beautiful day.
Please help Jed be safe in the army.
Please help Dad at work tonight that he will be safe.
Please help that I could get better.
In the name of Jesus Christ
Amen.

I Love their cute little voices. It makes their prayers so sweet!

We made Counts!

Since not making counts since June 23rd, her ANC finally went way up this time to 1300. So bitter sweet! We dreaded starting her back up on Chemo, but worried why her body wasn't recovery & knowing that it would struggle to fight off any infections she may get. Yesterday at Primary's went pretty smoothly. We had a lot of questions since we hadn't been there for so long. Good news her port didn't end up being clogged and the nurse at clinic accessed her without any trouble at all and her poke didn't cause her so much pain like it has the last two weeks. They are still going to do a blood test to see if she's 1 of about 100 kids that doesn't make the enzyme that breaks down the 6MP chemo she was on. This tells them if that's why it took so long for her counts to go back up & if next time she's on this chemo if they will give her a lower dose. More Good News, mark your calendar for July 22, 2013...we will be done with treatments two years from the day we started this new phase called Interim Maintenance I. So here we go again, starting back up with the poison. First they gave her 1.2 ML of Vincristine which she has had before through her port & then she had 3 ML of the chemo Methotrexate. The doses for these two chemo's will go up every time she makes count. Home health comes every 9th day to see if we go back up on day 10. If she doesn't make counts, we wait for 4 more days and then try again. Today, she has started complaining about her stomach, back & legs, but so far it has been mild. Yesterday she felt & looked really good. She went with Grandpa & Grandma up to the park for the 24th of July celebration and rode the carriage horse ride 4 times. Uncle Mark was one of them giving rides. On Sunday, she was nausea and threw up a few times. The last month without chemo was a nice break and she was able to have some fun! Here's some of those fun times!

Hooray for Fun Times!

With the unexpected month break from Chemo we were able to enjoy some fun times this summer! Although, it was hard to make plans because every week we thought we were going up North and would make arrangements for Kelsi to stay somewhere, but then it would get cancelled. We tried to still take advantage and do fun things!








(6-25-11) This was the first year we have ever went to the Hot Air Balloon Festival in Panquitch. We got there way to early and had a hard time staying until the balloons were all lit. It was neat how they all lined up in the street and used their fire torches to blow the balloon's up. I've never seen a hot air balloon this close up. Earlier in the night, Avery got her face painted which is something she thinks is so cool!

(6-27-11)We went to Koop to hang out with friends and for Macie Adams' Birthday Party!

We were still able to go to our annual 4th of July Robinson camp-out reunion. Chemo free:) Avery & Kelsi loved riding their 4-wheeler, checking out Grandma Robinson's cabin, being able to use our trailer we bought last year for the first time, hanging out with her cousins, playing on the swing & watching Panquitch Lake's fireworks. Avery was pretending she was an Indian Chief with the broom & being silly. Kelsi just wanted mom to hold her. She has really needed more attention since all of this, leaving her to go to SL & leaving her everyday for work has been hard on her, but after a few days realizing mom was staying around for awhile she started straying just a little from my side & having fun!

They also enjoyed having their Dad help them shoot guns, hitting the pinata to get lots of candy, practicing hola-hooping & just having some fun family time!

We got home from 4th of July in time for Avery to go draw for the raffle. They raffled off a gun, knife set, photography session, leather canteen, Avery bravery shirts & quilt. Avery had a fun time drawing & so nice of Dave/Becky & Ben/Mindy to set it all up & for those who donated. That night we also did some of our own fireworks, Avery buzzed off her hair & we went to Grandma Robinson's to watch Parowan's fireworks that night!

We've been swimming a few times and have rented the pool. One night some of the coconut members went swimming and then came over for ice cream sundae's. Cousin Bridger & Landon stayed for a few days, then we were suppose to take them back home, but we didn't make counts. It's not only us that is affected by the unknown plans. Grandpa/Grandma had to drive the boys back halfway & Justin/Rachelle met them. It was fun to have them stay for a few days and have some fun with us!

(July 11-14th, 2011) I really kept thinking Chemo was going to start back up....but it didn't. I finally decided to get her in swim lessons while she felt good and I was unsure week to week if she would start chemo. Avery and Saydee took private lessons from Alice. She loved being able to swim 4 days in a row and is such a good swimmer! Kelsi enjoyed going up to the pool to play. Kelsi was still asleep when I went to work this day, when I went to the pool to watch for a minute she had size 5 shirt/shorts on, I had to just shake my head. She didn't care...her & Dallen were having fun!

Random pictures: Avery has really wanted to play with friends since she's felt good. She loves having Abi over. There was this butterfly they found on the slide that had a hard time flying. They loved taking pictures with the butterfly. After, Avery hated that she couldn't wash that yucky butterfly smell off her hands. One of the pictures shows the first time she has jumped on the trampoline since she was diagnosed. She was so proud of herself and wanted Dad & I to come and watch. I don't have a picture, (surprise, surprise) but during this time was the first time & only time I've seen her ride her bike. That made her proud too. Kelsi just loves being outside and loves to run. She really is quit a fast runner...I love watching those little legs move so fast. We had to go to the Dentist because Avery had a filling fall out. They don't like you going to the Dentist when your ANC is only 500, but it was more risky for her to get an infection from the filling being out. She had to chew 4 antibiotic pills an hour before she went. She got to go pick out a few prizes at the dollar store. (So much cheaper then prizes at Wal-mart) Randomly she picked: a mustache, firemen hat, a toy that picks up things & a Hawaiian lay for her & Kelsi. Did I say R-A-N-D-O-M, but cheap:)

We weren't able to camp, but we did ride up to visit the Jense & Adams family at Beaver mountain. We celebrated Rachelle's Birthday and the kids rode their 4-wheeler. Kelsi started out so clean, but then her & Sophia must have went and found lots of dirt, because she came back looking real dirty. She was exhausted and fell fast asleep on the 4 wheeler.

We also have rode horses one of Avery's favorite things ever. Johnny takes her quit a bit, so I hadn't realized how good she is getting. It now scares me a little bit more, because if she falls off and gets an infection then it's not good. Kelsi has always been paranoid with horses, but she is slowly warming up to the idea. Kelsi & Sophia were brave and showed us how they can be cowgirls too!


Cute video I found (May 2009) just two years earlier, Avery has always loved to ride horses!

July 14th update!

Last week, home health came at 7:00 in the morning & again we didn't make counts. Her ANC was at 500 so it did go up 100 for the first time in 4 weeks, but just not high enough. Tomorrow home health comes & we will try once again. Her oncologist wants to see her either way this Friday. If her ANC is over 750 we start the new phase & if it's not they want to do additional blood work to see why her body is not recovering from the last round of chemo. They also said they will do another bone marrow aspirate to see what is going on with her bone marrow. This is where your blood cells are made. Hopefully those tests aren't necessary! We've had mixed emotions. It's been so nice to have a month off of no poison (chemo), but then we hate to see her counts drop too. Since she's been feeling better we have really tried to take advantage, while still being really careful, and enjoy some fun times for her. This month off, at least let her have somewhat of a normal summer. Also, last Thursday I had my Dr. appointment. He wanted me on bed rest this week due to preclampsia, so we are trying to take it as easy as possible. My protein test last week was 370 & today it was at 285 so at least it went down. For pregnant women he wants it to be under 300. With Kelsi the first time I did the protein test, it came back at 528 & he immediately wanted me down for the reminder of my pregnancy and 10 days before he started me it was 240. I have mixed emotions on when the best time is for this baby to come as well. From the sounds of it, he won't come when he's ready, but will come when the Dr. thinks it's time. I told him I really didn't want to get started and have another 30 plus hour labor. We have 4 more weeks until his due date of August 18th. I want to post some pictures of some of the fun times we've been able to have with a month off of all chemo treatments. Hopefully soon!

AND AGAIN...

Quick update: For the third time, Avery's counts are too low to start her new phase of chemo. Her neurophil dropped to 400. It was 600, then 500 & now 400. She needs to be up to 750 to begin this next phase of treatment. She has been off any Chemo for 17 days so we have seen so much of our normal girl back. It's not good that her counts are down, but for her she so deserved a break and has been feeling so good. We are really getting use to not having to go to Primaries every week and wish our battle with cancer was over. But it's not and for now we will enjoy our happy & fun times together.
The baby comes in 5 weeks or less so that should stir up some exciting & hectic times for us. Similarly to when I was pregnant with Kelsi, the Doctor is getting more concerned with me getting pre-clampsia (toxemia) again because of my blood pressure raising along with my feet being really swollen. With Kelsi I was on bed rest at 35 weeks. This week, I'm doing another protein test for the second time & more blood work to determine how concerned we need to be. He tells me I need to take it easy and not work so much. Easier said then done. We still know how blessed we have been & are grateful for awesome family & friends!

One Brave Chicka!

Avery having a good time pretending with Rachelle's 12 inches she just had chopped off that's it's a horses tail! No pressure to cut her hair!

Still being Silly!

Now it's her turn...if she wants a turn?? She's lost so much on top, but I still want her to have this one choice during her treatment. She's feels some pressure.

She's torn if she should. She keeps saying yeah just shave it, but then I see the reality in her eyes...her little bit of hair she's hung on to for so long will all be gone. She gets sad...I remind her she doesn't have too. If she wants, lets think about it for a few days or wait until it goes by itself. Her choice!

She says Just Shave it! It's done! Her look says it all....so hard for her to deal with! She never wanted to (nor ever thought she would have to) make this choice to buzz off all her hair.

No going back! So hard to understand why this has to happen to her. She's devastated. She goes through the emotions...so sad,so mad,she regrets her decision!

She cries...I just want to go home! We leave & have some serious conversations. She's worried that people will laugh at her, that she doesn't look beautiful. I remind her of those 5 star coconut members (Saydee & Sophia) that did have a choice & still choice to buzz their hair! You are ALL beautiful! She reminds me, that Saydee will get mad & push anyone that says anything!

She cools down and our personal hair stylist comes to our rescue to finish the job.

I think....I never wanted this for her. I go through my own emotions. Feeling for her that this isn't fair, but I know she is one tough girl! I'm sorry this is so hard for her.

She's dealing with it....she tries to tell spikes (What she calls Becky) it's her turn, but Daddy saves the day & volunteers himself.

This is fun!

One handsome man, one beautiful girl! Daddy saves the day!

Finding some hats to wear!

These two are so adorable!! The day finally came that she shaved her head (Independence Day). Later that night she started crying again about not liking her hair and she was so sad about it. My heart ache again for what you have to endure....you are my brave Avery! Never forget how brave you are!