I have really struggled with writing this update. I want to stay positive and shout for joy about the progress we have made in decrease of cancer!! However, there is a very real dose of realism that also accompanies this news that is hard to write in black and white. It has been a very touching experience to have this blog and allow our friends, family and complete strangers to accompany us on this journey. We all have been touched by River's spirit and her goodness, joy and peace that she has always possessed. However it is also hard to be public about such an emotional time and raw tender emotion as a parent. Thank you for all of the prayers, fasting and pulling together that you do with us.
On with the good news!
On with the good news!
CT and MRI scans show that lung nodules have decreased from about 20 to 8. They have also all gotten smaller. The biggest one was over 1 cm in diameter, and now the largest is 7 mm. HOORAY!! The 4 liver tumors have all shrunk – between 50 – 68%. There are no new legions. We feel like this is great progress. Chemo and the shrinking of cancer has helped River to stand straighter and walk very well. She has also been able to run around with sisters lately!! The oncologist team feels like overall the chemo has strengthened her! She has also had considerably less pain the last month. We feel incredibly blessed to have made such great progress.
However.... the surgeon feels like the progress has not been enough for surgery at this point. She wanted to see the cancer completely out of the lungs. It takes a million cancer cells before the legion can be detected by scans. We hope there is no cancer small enough to not show up on scans. We will do lung biopsy in the future to check what appears like healthy tissue to see if there is any sign of cancer.
We are ineligible for liver transplant because there is still cancer in the lungs. And the cancer is still too much to do surgery to cut out the cancerous parts of the liver.
It wasn’t the answer that we wanted…the surgeon told us initially that the liver HAS to come out for survival... but now we are ineligible for transplant....heartbreak and tears all over again. We were told straight out to make it a good Christmas as our odds are roughly 10% and our chemo doctor has not had a patient in our situation make it before.
BUT we are still hopeful and there are still options. We will still continue to fight for the miracle.
We will inject the liver directly with chemo through embolization. They have saved out a round of doxyrubicin (red devil) from her treatment (you have a lifetime maximum you are able to take) to be able to put it directly into the part of the liver we hope to save. To cut out a part of healthy liver to regenerate the surgeon needs to have a good artery going in and a good vein going out of the liver. The cancer is in all 4 lobes of the liver. And 3 of the lobes do not have good exit and entrance veins. It looks like there is a chance that injecting chemo directly into the liver followed by more chemo can clear up that lobe of the liver enough for a surgery to remove the cancerous parts.
The chemo protocol we are following is for 3 months on Cisplatin and then possible surgery. If surgery is not an option at that point there is a plan B portion – 3 more rounds (months) of chemo – a bit different than A to see if it reacts more.
BUT we are still hopeful and there are still options. We will still continue to fight for the miracle.
We will inject the liver directly with chemo through embolization. They have saved out a round of doxyrubicin (red devil) from her treatment (you have a lifetime maximum you are able to take) to be able to put it directly into the part of the liver we hope to save. To cut out a part of healthy liver to regenerate the surgeon needs to have a good artery going in and a good vein going out of the liver. The cancer is in all 4 lobes of the liver. And 3 of the lobes do not have good exit and entrance veins. It looks like there is a chance that injecting chemo directly into the liver followed by more chemo can clear up that lobe of the liver enough for a surgery to remove the cancerous parts.
The chemo protocol we are following is for 3 months on Cisplatin and then possible surgery. If surgery is not an option at that point there is a plan B portion – 3 more rounds (months) of chemo – a bit different than A to see if it reacts more.
We started this journey with stage 4. We started with a lot of cancer in that little body. It has made A LOT of improvement. We are going to continue to fight! The less cancer in the body – the greater the chemo works. We are at a better place now than we were 4 months ago. There is still hope for a miracle. We will still continue to hope.
It has been a wonderful Christmas, full of many miracles big and small (if there are such things as small miracles!). So many in the community have reached out with acts of kindness from putting up Christmas lights to presents to coming to sing. We even went ice fishing as a family and had a great time. River also went horse riding, crafts, and wants to learn to play the flute. She is more chipper and active and happy than she has been in months and we've enjoyed every minute of it! We are soaking up every minute of the laughs, giggles and playing with sisters!
It has been a wonderful Christmas, full of many miracles big and small (if there are such things as small miracles!). So many in the community have reached out with acts of kindness from putting up Christmas lights to presents to coming to sing. We even went ice fishing as a family and had a great time. River also went horse riding, crafts, and wants to learn to play the flute. She is more chipper and active and happy than she has been in months and we've enjoyed every minute of it! We are soaking up every minute of the laughs, giggles and playing with sisters!
River
Silver and River JUST getting together after a time apart!
Ronald McDonald Home hallway. Our hallway. Our home away from home.
Silver and Daddy riding the ferris wheel at Scheels
Wrapping presents together. She must have said 20 times...oh, I just KNOW that Silver and Summer and Tanz are going to LOVE these! She was SO excited to wrap up a gift she thought they would enjoy.
Summer
River and Silver
The Prima Ballerina of Ballet West paid us a visit and River got to dance with her to The Nutcracker.
Special. very very special. She was SO thoughtful, kind, and positive, upbeat, encouraging.
River trying out her toe shoes from the ballerina later.
WOW! What a surprise greeted us!
Our house!!
River Silver and Summer were so excited by the surprise of the north pole in our very yard!!
Contemplative moments
New Dresses
Christmas Morning
(This one somehow snuck in here, but it was so cute! Playing monopoly in the hopsital. The nurses wear these blue coveralls while handling the chemo.
Summer with a sheep!
Summer and Daddy
River
SIlver
Snow angels
I love, love, love this picture!
At Grandpa and Grandma's house
PacaMa telling a story about her childhood with all the grandkids.
Inventing a new Christmas Trivia Game
What are the 2 most famous snowmen?
Answer: Frosty and Olaf!
Why don't seagulls go in the bay?
Answer: Because they don't want to be BayGulls
:) They had so much fun making up the questions!
Silver wanted to play Daddy's trumpet!
She and Summer had such natural ability to toot this horn!
Headed out for ice fishing!
River's snow heart
Shado Scott, Scotty and Judd.
Judd is the most photogenic kid! Always adorable!
Summer and Daddy
Silver and River
River with Ducky snow sculpture inside tent
River and Daddy
Rio and Summer
LOVE the sunglasses
Tanz and her baby doll
Summer and Baby Doll
The soul would have no rainbow had the eye no tear
Hearts would gain no courage had the mind no fear
Faith would not grow mighty had no doubts been sown
Joy would fill no being had sadness not been known
Sunrise has no beauty without darkest night
Stars would never twinkle without fading light
Peace would fill no bosom had there been no strife
Time would serve no purpose without eternal life.
-Clive M Killpack
2 Nephi 5:27 "And it came to pass that we lived after the manner of happiness."
Hearts would gain no courage had the mind no fear
Faith would not grow mighty had no doubts been sown
Joy would fill no being had sadness not been known
Sunrise has no beauty without darkest night
Stars would never twinkle without fading light
Peace would fill no bosom had there been no strife
Time would serve no purpose without eternal life.
-Clive M Killpack
2 Nephi 5:27 "And it came to pass that we lived after the manner of happiness."
This is a Beautiful post Karin!!! A Precious journey!
ReplyDeleteThank you for this beautiful, tear inducing update. My heart goes out to you and tie family. Thank you for your perfect example of parents full of faith in our Savior. You two strengthen my testimony and I thank you for that.
ReplyDeleteThank you for having the cottage to share this update. The kids ask me all the time how she is doing. We remember River in all our prayers. Sometimes if the prayer is ending a tiny whisper is heard River and she is prayed for. They have also stayed to ask for blessings for others who need help in the world. It has been a blessing in our family's lives to see their hearts turn outward. Love you and miss you all!
ReplyDelete