There were numerous times today I had to remember to pray for that peace, to trust The Lord with all my heart...probably looked like a nut with my hand on my heart talking to myself, but it worked. Every time it started to get rough or bad thoughts came in, something would happen to distract me and take my mind off of things. We got the phone call this afternoon from Ellie's nurse practitioner (who wore the stickers that Ellie put on her that morning, all day) that Ellie's brain and spine MRI's came back showing no evidence of disease. That tumor is still gone, that spot in her brain still hasn't changed, which leads to believe that it's nothing more that a bruise from her surgery, and there are no tumors growing on her spine. The results from her spinal fluid were not back yet, we are hoping to get the results tomorrow when we go to clinic. Last time she still had tumor cells in her fluid, but it had decreased since the beginning. We would love to hear that the tumor cells are all gone!
Ellie has finished all four rounds of her induction chemo and now moves on to the consolidation rounds ...there will be two of these. Ellie will go inpatient tomorrow night we believe. She will stay in the hospital for 5 days this time, receiving a new chemo med she hasn't gotten before. Thankfully Richard and I will both be here so we can switch off staying at the hospital over night. I'm not excited of 5 days of fighting over every meal, but I know at the end of those 5 days, we will be heading home. And for the first time all 5 of us will live together in our own house, in our own rooms. It will be interesting to see...but I'm so excited for it! We've been warned Ellie's counts will drop and it could take even longer for her counts to recover, and we might not be able to have all the visitors we'd like or be able to do all the things we want, but we will be home. We may even end up in the hospital at home, but again...we are home. The anxiety I had about us traveling back home and being far away from St. Jude is gone...and I feel peace.
Thank you again for your prayers and encouraging words.
Never imagined this would be our journey...but I've come to call it our beautiful journey.
Prayers, Praise and Pink....and Peace
Carly
6 comments:
Praying for peace...continued peace for all of you. I can't wait for you all to be home together as a family! Ellie is in my prayers:)
^^I too pray for continued peace! Thank you for sharing your journey Carly!! It has brought inspiration to all.
Good news. You may leave St Jude Hospital but Saint Jude will be watching over you.
Here is a Novena which is said for 9 days. (Just found this out)
May the Sacred Heart of Jesus be adored, glorified, loved and preserved now and forever. Sacred Heart of Jesus have mercy on us, Saint Jude worker of Miracles, pray for us, Saint Jude helper and keeper of the hopeless, pray for us,
Thank you Saint Jude
Read more: http://www.prayers-for-special-help.com/st-jude-prayer.html#ixzz2YlvC7Pcy
I have been reading your blog since April, when my 2 years old son was diagnosed of Pineoblastomas.
I am happy to know Ellie's tumor is gone. She is amazing. Every time I read your words and see the smiling faces of your families, I realize hope is still in front of me, beautiful sunlight is waiting for us at the other end of the tunnel. Thank you very much.
My son has undergone surgeries, and just received first round of chemo, the side effects make him sick. The road ahead is long and tough, I hope i will be able to call it a 'beautiful journey' and share with my son in the future.
Good luck and take care.
Angus (Hong Kong)
Angus - I'm really sorry you and your son are in this, no child and no parent should ever have to go through any of this. My 7mos ol son was also diagnosed with pineoblastoma (we lost him a couple of days after his first birthday). I'm commenting on here to let you know there's a group on facebook called Pediatric Pineoblastoma... parents in the group are very supportive and informative.
I am adding him to my prayers and hoping for the very best. Does he have a support page set up like on caringbridge?
You, Miss Ellie, are fearfully and wonderfully made! You are in my prayers everyday ♥
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