Courtney and I spoke with the oncology team yesterday. We are expecting chemotherapy to start on Monday following a minor surgical procedure this Friday.
Our day to day existence has been much easier since we left the hospital two weeks ago, as Raina has been essentially symptom free. A happy baby makes for happy parents. Her big smiles and infectious laughter make it possible to temporarily forget the reality. However we're more than a little worried that the chemo will be hard on her. If so I anticipate it will make everything else harder to slog through. I suppose in the back of our minds is also the fear that she may never return to the bubbly baby we know. Successful treatment at this stage will only bring more treatment, whether it's radiation, surgery or more chemotherapy... All have their own side effects and potential complications.
The oncology team will assess the progress against the tumor after this first round of chemo. If we do not see much response (shrinkage) then it appears the recommendation will be to switch to palliative care. As such, the next three weeks will be a pivotal time. If you have favors to call in with whoever runs this crazy show, by all means.
Jason, Thank you for the updates. They help all of us prayer even harder! Please know that positive vibes, lots of prayers and love are headed your way over the next three weeks. Love to you all! Danielle and Kevin
ReplyDeleteI found my way to your blog through your photographer's blog. My thoughts and prayers are with you and your sweet girl.
ReplyDeletePraying for Raina's surgery today and in the days and weeks that are ahead. "Therefore I say to you whatever things you ask when you pray, believe that you receive them, and you will have them." Mark 11:24
ReplyDeleteCourtney, Jason and Raina,
ReplyDeleteWe are so very sorry to hear about Raina's diagnoses. I found your story on Little Moon and was immediately touched and inspired. 5 years ago my husband was diagnosed with a brain tumor the news was terrifying. I can not begin to imagine how that would be compounded when hearing it about my child.
We have found tremendous support and strength from participating in the DC Race for Hope, which is being held on 5.1 this year. www.CureBrainTumors.org. The people involved are all committed to finding a cure. If you haven't already stumbled across this group or the folks from the Accelerated Brain Cancer Cure (http://abc2.org/), I would encourage you visit their sites. I hope and pray that perhaps you can find some support from the people involved.
Your daughter, Raina is beautiful. She is clearly a happy, loving baby who adores her parents. The three of you are in the fight of your lives and you are handling it with grace and dignity. My and my family's thoughts, prayers and positive energy are with you!
Sincerely,
Lauren
Jason, Courtney, & Raina,
ReplyDeleteWe have been praying like CRAZY! Lots of us have :) Jason-thank you for all of the updates and the pictures. We're here if you need anything. Love you guys!
Liz