River Update: AFP - the hormone secreted by active cancer cells has had another dramatic drop! Normal levels are around 20. When we started in September AFP was over 1,444,000. Beginning of October it had dropped to 180,706. Results just came in: 21,209. HOORAY! Blastoma is responding to Chemo! HepatoCellular does not secrete AFP, so we will check with CT scan after Christmas what that has done, but the Blastoma has had an incredible response!
River was sick after chemo (Oct 16-19) and recovered in the Ronald McDonald home (Oct 19-27). Immunity was low and Daddy gave her Nupagen shots to stimulate bone marrow to create white blood cells. Daddy does not like needles or shots! Mommy went down to be with little girls Oct 20-27. It was SO good to spend 2 full weeks with my Silver, Summer and Tanz. A fun week of giggles and stories and races and jumping on the tramp.
We had a week off of Chemo and Tuesday (Oct 28) we were able to all be home together (pictures of that in next post!) She was able to stay until Sunday. Such a great time! River thrived at home! We saw more movement in a few hours than we had in 2 months combined!!
Halloween Party with Incredible Insurance Office Ladies - Holly and Dez and kids.
Painting Pumpkins and Haunted Houses with lots of candy :)
Silver the Cheetah!
I LOVE the movement in this pic!
Complete with a tail!
River received Elsa and Anna hats - complete with long braids and let Silver borrow it to dress up as Elsa for school Halloween party. Silver even had frozen silver shoes to match.
L-R River, Silver Summer
Indian Girl, Cheetah and Sheep (Cheetah in Sheep's clothing?)
L-R River, Silver, Summer, Tanz, Karin
River has loved Native American Indians for a long long time. She has loved reading about Sacajawea, Naya Nuki, and Kaya, among others. She has studied Indians in school and has
been to Indian exhibits. She has wanted moccasin boots!
Homemade witches brew Rootbeer!
Pin the face on the pumpkin
Bobbing for apples!
Daddy nabbed one too!
Silver and Summer kept at it and kept at it! It was COLD water and so challenging, but they didn't give up and each pulled one out! A dollar bill for each one that got an apple out! Summer with her apple and dollar.
Pumkin Carving!
Summer's 2nd from left with heart nose, Silver's just to the right of that.
PacaMa helping Silver draw on the face
Paca helping Summer cut out her "moon eyes"
Tanz LOVES chairs! Especially ones her size
L-R Summer (Elsa) River and Silver (Ana) reading books
Coloring to decorate our house for Halloween! I just love how Summer holds her markers :)
Silver
Creators of River's amazing Indian costume:
L-R Star, Shado, River, Skye, Sherre - Pacama
Shado arranged for the hair and boots, Skye made the necklace and Pacama and Star did the dress.
River has been so excited and was overjoyed with it all!
She wears the boots and the necklace everyday. She also had us bring up the hair and the dress.
River thought the bobbing for apples looked so fun, so when we got home she did her own bob for apples.
Back at Ronald McDonald - Twinner Boots!
Halloween Costume Party!
Ghost Poo Fun!
Hunting for Gummy worms through whipped cream
Summer and Quinn
Cheetah Jump! I love how the tail flies out too!
We drove up Sunday (Nov 2) night and were at Primary's bright and early Monday morning to run Kidney function tests, hearing tests, X ray and ultra sound. We found out that Ultra sound will not be an option for us to monitor liver size as it is behind the ribs and with other organs - the border is not so defined as to be able to measure it with Ultrasound.
Hearing has had damage - can no longer hear high pitched sounds such as s, f, th and birds chirping. This is an expected side effect of the chemo she is on, so we knew it was coming but still tough to experience :( There has not been noticeable decrease in normal conversation. Hearing aids are an option if further hearing is lost, and much can be compensated for with hearing aids.
Tuesday brought more chemo - we were expecting just the cysplatin. Just :) But instead got Doxyrubicin (red devil) then 24 hours of cysplatin followed by another Doxy. All considering she is doing good. lots of nausea and can't keep much food down, but went home with port accessed for IV fluids at night so is staying hydrated! River is in good spirits.
Silver's prayers are so sweet : Please father shine down on us and listen to our prayers.
I had gotten really overwhelmed with the road ahead: all of the different meds, side effects, cancer, chemo, pain, nausea.....
As I was pondering all this in my heart I read Mosiah 4:27 to Silver and Summer:
And see that all these things are done in wisdom and order; for it is not requisite that a man should run faster than he has strength. And again, it is expedient that he should be diligent, that thereby he might win the prize; therefore, all things must be done in order.
I started explaining what it meant and Silver says
"Slow and steady wins the race!
Slow and steady River wins the race against cancer."
Thank you Silver for teaching me.
All things done in order.
1 Day at a time.
1 shot
1 Adhesive Removal
1 Trip to the Bathroom
1 Smile
1 Prayer
1 I love you
1 Letter
1 Breath
at a time.
This is a beautiful beautiful post Karin!! The good news in it lifts my heart!!
ReplyDeleteI pray everyday for you and your family to have strength and comfort. You are such a wonderful shining family and we all love you. God bless you.
ReplyDeleteLinda Guymon
Oh my goodness! I love the family togetherness that you show in these pictures. I love the wisdom that little Silver shares
ReplyDeleteI love you so much! You are in my thoughts and prayers always.
ReplyDeleteSpankie
Wow, what strength and faith. Wonderful family Halloween fun. Children are our angels from God. Both the wisdom to see the truth (Silver) and the strength - fortitude of spirit, to keep fighting (River). And of course Summer's delicate marker holding (proud nursery teacher) Such a strong family. God Bless all of you.
ReplyDeleteLaura Bowler
I so love this post and all the amazing photos each capturing a different emotion, look, and feeling. So grateful that River was able to come home and enjoy all the festivities with the family. She is such a bright light and has such a sweet spirit. My love, thoughts and prayers are with you daily.
ReplyDeleteHow I love to read your posts and feel the love your family share with each other and the Lord. I pray for His blessings on River and her entire family as you continue your journey. Love to all of you! Marilyn
ReplyDelete