Two Weeks; Chemo #4

Call me crazy, but I think Avery is really starting to like the Hospital!

We made it through another round of Chemo yesterday! It's such a long drive, but they were quick to get us in & out in 2 hours. The doctor came and spoke to us and wanted to know how Avery's been doing & the side effects she's been having. About an hour before we made it to the hospital her feet began really bothering her. They were so swollen. We stopped for her to us the bathroom and she was not able to walk. Both feet had swollen up so much that her little toes you could barely see with all the puffiness going on. They were really hurting her, I was hoping that someone wouldn't come ask us what was going on in the bathroom to make this little girl cry so much. Back in the car I tried to elevate her feet to see if that would help. We had already given her pain medicine 2 hours before, so it was to soon for that. I asked the Doctor about this and she just said it's yet another side effect of the steroids, along with her belly being hard & bulging, swollen face, increase appetite (she wants lots of pizza, any hour, any time), change in taste buds (doesn't like sugar anymore, that's crazy for her), change in mood/behavior. While on steroids they want them to gain 5 to 10 lbs to be able to handle the times they won't feel like eating or if they get mouth sores & can't eat. Basically for the feet, there isn't anything we can do to ease the pain. She has barely walked these last two days. It's so sad. The Doctor told us once she had to be on steroids for 7 days after 3 days she quit taking them. She just couldn't take it anymore. I said really, "And you put these poor kids on them for 30 days straight".

Accessing the port was scary again for her. The child life specialist was trying to help me distract her. Avery just kept saying are they going to poke me again? Are they? Are they? I said it was only going to take a minute and that's way we numbed it. When they got the needle inserted she still was crying, "Are they going to poke me again". It was all over they were withdrawing her blood and then started giving her the Chemo. Her blood work came back good. Her HCT (Hematocrit) which is the percentage of blood volume made up of red blood cells was 23.1, last week was 28.3 as long as it's over 20 they don't need to do a blood transfusion. Her ANC was 800, which is up from the 500 from last week. She's been very tired & weak, had lots of stomach pain, her belly has had some problems & then her feet are swollen & it hurts her to walk.

Thursday May 5th, 2011: Something that made us laugh:)

Mom: Avery there are so many people that love & care about you. I got a gift from work today to give you. There was a present left in my car today just for you from Addie in your pre-school class. The Primary leaders want to come visit & bring you a present. And Macie & Sadie want to come & see you & bring a surprise. You are so lucky that so many people care about you so much.
Avery: Wow mom, sounds like we're going to have a full house. And then as sweet as could be, I'll share some of my gifts with Kelsi. She needs some too. Thanks sweetheart for making mom smile:) Dad, me, Grandma & Grandpa Adams all got a kick out of it.

We are very grateful to the long list of people who have showed their love & support to our family. We thank you for making all this a little bit easier by your encouraging words, service, prayers, visits, thoughtful cards, dinners, fundraisers for Avery, plays dedicated to her, special gifts for Avery and every one's love & concern.

Really......I thought the Lord doesn't give you more then you can handle. I already felt with a full time job, a 5 yr old, 1 yr old, church calling, pregnancy that this was all I could handle. Apparently no. Avery did pretty good today, even helping Saydee make her birthday cake. I wasn't there, but the pictures showed her so happy. Her stomach hurt today, but eventually the medicine took affect. Tonight, she was so mad especially at me. She says some hurtful things and again I try to remember what the nurses say about kids being on steroids. Thanks Greta, for your understanding & encouraging words. She first hand, watched her father battle cancer. Her abdominal pain got so bad tonight & the medicine wasn't helping. It has been a rough night & I honestly feel like I can't do this & I can't handle watching her be in pain anymore. Some of this pain isn't new, she has been having pain for weeks. I keep hoping somehow this will go aways & this isn't real. That she can be a normal 5 yr old & not be experiencing pain off & on, not be taking all these drugs & that she can want to play like normal 5 yr old want to play. I called for back up & my dad and brother came gave her a priesthood blessing. Ironically my last lesson I gave in Young Women's was on the blessings of the Priesthood. Maybe I needed a big reminder of these blessings!

Argh............Throw up time today! This morning she wanted pancakes at 6:45. The Steroids makes your appetite increase and the steroids can make you crave salt (That was evident last weekend when she ate lots of salty chips) After, she yelled from the hallway, "Mom I threw up". Not want I wanted to hear, while Pregnant someone throws up then I usually do too. I went back to work today, which is so hard to be away while she's not doing good. I feel like I have to go back to save my sick time for when I have my baby. I'm due in 3 1/2 months. She had leg pains this morning, in the afternoon her stomach hurt for several hours. I now understand while they give her strong medicine that usually works and tonight while laying on the couch she throw up twice all over the couch, her clothes, blankets and the rug on the carpet. If there is a luckily, then luckily it got mostly on the rug & couch cushion and not the carpet. Doing lots of wash. And now back to the leg pains, which is part of the Leukemia!

When I was Preg-o with Kelsi, Avery was 2-1/2 yrs old. She was so cute when I was always throwing up. She would come in the bathroom and pull back my hair and tell me, "Mom I'll go get you some water, I'll take care of you". She still likes to hear this story! It was so cute! So I told her tonight, "I'll take care of you, like you use to take care of me when I threw up." Poor thing. Her legs are hurting her so bad. Come on medicine, it's time to kick in. Got to go! ARGH!

1 Week Down

Again it feels good to be home from an all day trip at PCMC. We had Clinic at 11:00, where they weigh her, take her height, temperature etc then back to a room where several doctors talk to us about what side effects she has had, how she's responding to the treatments & any questions we have. After her surgery last week, they inserted the port while she was asleep & left it accessed for the entire time we were at the hospital. Yesterday, we had to access her port for the first time. This was something new and scary for her. We numb the area 1/2 hour before, wiped and cleaned the area, then the nurse put the needle into her port with the IV line hanging down to draw blood and insert more Chemo. The child life coach & I were doing our best to distract her by reading books, playing with toys that light up etc, but all I could hear was Mommy No, Mommy No. Don't let them do this to me. I know with time she'll get used to it, but for now I hate it as bad as she does. It sucks! They had a hard time getting blood drawn and I just prayed they wouldn't have to start all over. They taped the area until after her procedure, in case they needed to access it again before we left or if her counts were too low and see needed a blood transfusion.

Normally your WBC (White Blood Cells) is between 5.5 thru 15.5, when we left the hospital on Tuesday it was .8 and yesterday (Friday 29th) it was 1.2. So although still really low it has improved. Her ANC which is a measure of the infection fighting WBC normally is between 1500 thru 850, when we left the hospital on Tuesday it was 300 & yesterday it was up to 500 still low, but not low enough we had to get a blood transfusion.

We then headed downstairs to the RTU (Rapid Treatment Center) she wanted to know why they were putting her asleep again and what were they going to do to her. In simple 5 year old language, I tried to explain. Last week, she went to the operation room for her surgery where no parents are allowed once they take them for surgery. At the RTU, one parent is able to stay in the room until she goes to sleep so this helped. She fell asleep within 3 seconds. It only took about 20 minutes for the Lumbar puncture or spinal tab to remove a small amount of fluid surrounding the spinal cord for tests. It took longer for her to wake up. They came got me when she started to move. However, when I went back there she was still out big time. I warned the nurse she possibly could be real upset at her after our experience last time. She laughed and said after analgesic some wake up upset. Avery woke up tired and hungry, but pleasant as could be. The nurse asked her if she wanted something to eat and she immediately started munching on chips. We were done. Yeah! We left to get a bite for her to eat, but unfortunately everything started to hurt, including her mouth so she wouldn't eat her favorite, a Roast Beef Sandwich. One of the side effects are mouth sores and of course this was the only medicine we had left at home, not that she would of taken it willingly anyways. Again, today she is having bad mouth sores on her lips. Her bottom lip is swollen and she is crying about them. The so-called magic mouth wash, wasn't magic for us. Lets just hope the sores go away fast.

It breaks my heart, any shirt Avery wears she pulls it up at the top and says she doesn't want anyone to see it. (the scars were her port is) I asked her why it shows how brave she is, but she just hates that she has something there. It breaks my heart..... because when she starts to lose her hair it's going to be a lot bigger hurdle then people seeing little bandages under her shirt. We Love you Avery! You are being so brave!

Supporting Avery at the Hospital

Avery's Sweet prayer the night before we left the Hospital:

Thanks for my family.
Thanks for my blessing.
Thanks that I can feel better
and help me that I wont hurt anymore.
Thanks for my blessings.
In the name of Jesus Christ
Amen.

Hooray were home!

Wow! It's so good to be home! A big thanks to the clean team who totally sanitized our house before we got home. They cleaned rugs, Avery's sheets, vacuumed, dusted, sanitized toys, floors etc. Also, to my dad & Shane who mowed my lawn and got my garden ready. The Welcome home sign that pleased Avery so and dinner all ready for us. Thanks so much!

Late Easter with Kelsi!

Even if it's just for 2 days it is so good to be home especially for Avery and for little Kelsi to have her parents home. This has been hard on Kelsi too, to not have her mom/dad around for a week. She was up to the hospital for a few days, but kids can not come back in the ICU (Immune Compromised Unit) and with all that was going on it was hard to leave Avery's room. Kelsi has been very whiny, clingy and just wants to be held today! It makes it harder to care for Avery. I want to help them both.


We colored Easter Eggs today, which was a highlight of her day. She was so disappointed to have missed that. Other then that, Avery has had little energy today and just wants to lay around. She's had headaches and has said it hurts to move her head. She hasn't had much of an appetite; however I feel like overall she's handled yesterday's Chemo pretty good. They say the treatments are going to get a lot harder on her body. At times she has been in such a good mood and other times I see the sadness of all this in her eyes. I, of course I'm heartbroken for all the things she's not going to be able to do. Finishing Pre-school, finish gymnastic she had been doing this year, tee-ball (although the last Doctor said if she feels up to it, let her play),going swimming, going to her primary class yudda-yudda-yudda. I know we were figure all this out, but for now it's overwhelming and I'm scared and the fear of ever losing her it indescribable. We thank you for your prayers and I'm grateful that PCMC figured it out so fast.

Things to look forward to (Not really): On Friday (29th) we'll head up to PCMC. She can't eat until after her Lumar Puncture. First, they will draw blood and check her counts. If they're too low she'll get an another blood transfusion. She will get her Chemo treatment through her port. They will again put her to sleep and draw fluid from her spine to test to see if they find any cancer cells there. Last Friday it came back negative, but they will check every time we get a Lumbar Puncture, in case any cells they looked at were missed and to once again insert Chemo through this puncture that goes from her spine into her brain. The spinal tap is a place that Chemo doesn't get. It will be a long day! And Kelsi will get abandoned again. It's all very over-whelming to think of the big picture of 2-1/2 years of treatments, first 9 months or so of more extensive treatments, trips to SL every Friday for a month or two; however I'm trying to just focus on week by week and get through each day.