I know its been a few days since our last post...we apologize for not updating sooner. Jeremy and I have been struggling with our emotions the last few days and to tell you the honest truth, it was all we could do to make it through the day. I've considered today a success in terms of dealing as I have only lost it twice - considerable improvement from the previous 7 days. The bonus is that now we have something else to focus on - visitors. That helps.
Avery's counts are down...ANC of 800 yesterday and her hemoglobin was at 7.4 - which means we made them transfuse. Typically they wait at CMH to transfuse when they are below 7 -- St Jude uses 8 - I freaked out and won. Small battles right? After the 4 hr transfusion she was a much happier girl and full again of giggles. We will wait for her counts to drop off entirely and then come back up. We are then scheduled to go in patient on November 4th again for 4 more days of Chemo. After that round we will do another MRI/LP to see if the treatment is helping. If it is, we can continue for a few more rounds. If it is not, then we will stop.
Grandma Lippold and Uncle Jason arrived on Thursday night and spent some time with us. Today we went to the Zoo - absolutely perfect day for it. Humid and 75....typical Kansas City random weather in mid October. We were also followed around by paparazzi...aka - McKenzie Ring, who has graciously offered to document a weekend with us. She snapped away while we toddled around the zoo and I'm sure caught some great shots for us. We are so grateful to be able to have that opportunity and that we could do it with a friend, rather than a stranger. So thank you McKenzie. (she's from the Omaha/Council Bluffs area - so if you are looking for a photographer let me know!)
Tonight we arrived home to Nana. She drove down from MN today and will be spending the week with us. We were really excited, because Nana always arrives with entertaining gifts. This time she brought a new necklace that lights up, stickies for the windows, and light up-spinny thingy that glows. Needless to say Avery was thrilled. Tomorrow when we wake up GJ will be here as well. Yay! This week is also our week to carve pumpkins and put on our costume....daddy is not cooperating and is refusing to wear the green tights, so Tinkerbell might not have a Peter Pan this time. I'm taking volunteers if anyone has the guts....
Jeremy and I are trying our best to make sure Avery has as much fun as we can possibly provide her. If anyone has any brilliant ideas - we'd love to hear them. Thank you again, to everyone for all of your support. This time it's going to be a much heavier emotional support system that is needed and we are so glad to be back in Kansas City surrounded by people who love us.
Still praying for and expecting a miracle...
Jenn & Jeremy
Dear Avery,
ReplyDeleteI am so proud of my son Eli and know that you would be too! Today was his birthday party and he asked his guests to bring donations instead of presents. His goal was to raise $100.00 for childhood cancer, my 5 year old made $169.00. HE is making a difference, we all are, for you and every other child fighting. Thank you for inspiring us, for leading us, we love you.
---The Peterson Family of Dallas OR
Jenn, My thoughts and prayers are with you, Jeremy and Avery. She appears to be a little fighter, so if anyone can make it through it's her!
ReplyDeleteAndrea
You and Jeremy are wonderful parents doing the best you can. I KNOW Avery knows this and loves you for it. My heart goes about to you. Cherish the little things (I know you've taught me the importance in this).
ReplyDeleteLove,
Sara
Hellloooo from the Moss family! I know Nana shared Sophia's little prayer for Avery and she is very diligent in saying it every night.
ReplyDeleteWe were at church last week and the pastor was talking about how "There is no such thing as pointless pain" and I sat and thought about you as he was talking. Actually I've been thinking A LOT about you. I've been thinking that this pain we feel for what the doctors are saying is just going to have to make us stronger, make us pray harder, have more faith, more hope. We all need to rally around your baby girl and give her all of our faith, love, hope, prayers, and strength. I'm a true believer in the power of the positive. And what I have believed from the beginning with Avery is she has no idea what negativity is. Negativity is a learned behavior and it's a killer of the soul. Your beautiful girl is just that...beautiful inside and out because she just doesn't know any different. NOW...if we all can do that same thing, use her as an inspiration...anyhow, I believe that's what miracles are made of. Doctors only can speak from experience...wouldn't we all love to give them an experience so different...basically to shove it back in their face and make them believers too?
So with all of my hope, love, faith, and strength I pray. Then I end that prayer with Sophia's..
Avery has a little angel, I know that she is there, PROTECTING her from danger and guiding her with care..AMEN!
Thank you by the way, thank you for letting us all into your life and sharing with us. You and Jeremy are also an inspiration of strength and love and courage. Incredible is how I would describe you.
Enjoy every second with each other!
Much Love,
Heather