End of Week Three!

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

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

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

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


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

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


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