Yesterday marks two weeks since Raina was admitted to begin her first round of chemotherapy. Night fevers, a bout with a respiratory virus and a loss of appetite have extended the expected 8-10 day stay. We're hoping to be able to take her home this weekend before returning for a second cycle next week. It has been a difficult stretch so far and she could use some time in a more comfortable environment we think.
Prior to the start of chemo the oncology team sat us down to discuss the results of Raina's lumbar puncture procedure, which revealed that tumor cells had spread to her cerebrospinal fluid. Having just come to terms with the final pathology and mentally prepared to see her struggle through chemo, this was an unexpected and unfortunate twist. As we previously understood, the initial treatment won't vary with this finding. However it does complicate the treatment in the long term and puts Raina in the worst category statistically. We are still waiting for our luck to turn, as by our count we've had five horrific developments in a row since this ordeal got underway. It's hard not to take this as proof that the universe is conspiring to destroy us. Though occasionally we get a glimpse of how beautiful life can be when Raina smiles unexpectedly after a rough day or the morning sun shines through the windows into our makeshift home here at the hospital. So we'll resist the urge to be bitter and despondent for the time being.
It turns out the MRI will not reveal the chemotherapy's total effect for a few weeks, hence a second cycle in the interim to try and make further progress. We will wait and take any luck we have coming at that next MRI, please.
Hang in there. I'm thinking about all of you.
ReplyDeleteCatching up on the pics and posts...still praying for you three always. Today, in Rio, saw the Cristo Redentor, aka Christ the Redeemer. I got to the top and the 38m statue was covered in clouds and mist. Here and there, the mist would clear up, with just enough time to snap a photo. After about a half an hour, the wind came and cleared up everything giving all of us camera-cladded tourists with just enough time to take more than one picture, and eventually just stare at it. The Brazilians say, in the summer season, it's always clear enough to see the Cristo, you just have to wait for it...
ReplyDeleteLooking forward to another pizza night!
-Katie L.
Heard of your story through Little Moon's post, and am following your unimaginable journey. I pray for you all every day. Keep your hope alive, and try to stay in the moment. Trust that life will turn out just as it should, and that miracles happen every day!
ReplyDeleteAlso, not sure if you have time to read at all, but I HIGHLY recommend going to your local library to borrow the book Many Lives, Many Masters by Dr. Brian Weiss. It gives a fascinating insight into the purpose of life and the challenges that souls choose before incarnating on Earth. It will change your life.
I am so sorry to hear about the recent update. You guys have been through so much.
ReplyDeleteRaina has the most beautiful, healthy look despite all her little body has been through. Hold on to that and know that she is a fighter.
The prayers will continue!!! XOXO Danielle & Kevin
I check the blog each morning to see new pictures and to see if there are any updates on this little girl that I do not know- and a family whom I have never met but feel drawn to.
ReplyDeleteI, like the poster before am captured by Raina's spirit- her battle will be a hard one, but you can see in her eyes that she is a fighter, and along with love and support from both of you and your family and friends I am confident that news will be positive in weeks to come.
I find it amazing how even at times when people feel alone- there are people, maybe even strangers, that care and are with you in spirit hoping and praying for the same things that you are. Let that be some comfort to you....
Again- I often think of you all, and keep you in my prayers each night.
Erin Gaeng
Your love and strength has been,by all appearances, kept Raina strong and as happy as can be expected. Keep the faith. x0
ReplyDeleteThere are so many like me - connected to you via other people and other blogs. We've never met but I am so drawn to you all - especially your sweet little Raina girl... I too check on your blogs multiple times a day... love seeing the pics of Raina smiling and playing while her body and her doctors and her parents hold strong for this fight. FIGHT ON. We are ALL here - we will do whatever we can to help you, support you, fight along side you to beat this disease. I signed up today to join the bone marrow registry... my husband too. You are so strong to post and you are impacting other people by doing so - you are making me take action. I pray every day that Raina continues to be blessed with the will to FIGHT THIS.
ReplyDeleteJason & Courtney,
ReplyDeleteI am sorry this first round of chemo has been so hard for Raina...and for you.
Going back to the notion that a referee has stepped in to the ring, made you shake hands and yelled FIGHT....remember this is only round one. Fights are rarely ever won in the first round. Usually it is a time for opponents to size each other up and identify weakness that can be leveraged in subsequent rounds. There are more rounds to go in this bout and although Raina may not have unanimously won this first one, she certainly didn't lose it... Her little body has seen what the opponent has and will be better prepared to 'hold her own' in future rounds. Her opponent may very well be bigger, stronger and faster but Raina is far more resilient and loved, which put the odds in her favor. A knockout of Raina's opponent is possible at any time.
My wish for you is that you get to take Raina home for the weekend and that her health and the weather cooperate to give you a chance to take her outside and feel the sunshine on her face, to take a wagon ride with Raspberry and Penny and just get to be together and build strength for round 2.
I, like so many others, are wishing you well and sending you positive vibes. When it is hard to keep the faith, know that we are all keeping it for you!
With Love From Germany
ReplyDeleteI for one am hoping for the knockout of Raina's opponent in this 12th round! I Love you both Jason & Courtney, and Raina is always in my Prayers!
~Samson
I landed here from Little Moon Photography. Those pictures are beautiful - as is your little one. I cannot imagine what your reality has become and can only say that I am thinking of and praying for Raina.
ReplyDelete... Leslie
Courtney and Jason,
ReplyDeleteThank you for all the updates and allowing us to be a part of all you are going through. It's amazing to see how many people's attention Raina has captured- she has a very enchanting personality that shines through even in photos!
The center is interested in putting together a team for the Race for Hope in DC on May 1st in Raina's honor with your approval. Also, Mary and I would love to visit if possible. I can be reached at (706) 399-8285 or emily.boyce79gmail.com.
Please know that we are here for you and will support you and Raina in any way possible!
Much love and many hugs for you all,
Emily
I think of you and your little girl constantly. You're in my prayers, and those of my church too.
ReplyDeleteSending you positive thoughts & energy,
Kim
I sure hope you gets those results soon. I've been checking your page none stop today since last nights email.
ReplyDeleteWaiting to hear some good news!!!
- The Smiths
Hey, thanks for the email. I really hope she gets to feeling better soon so they can do what they need to.
ReplyDeleteFor some reason it keeps coming back as an error and won't let me send you an email back.
Anyway, we'll keep praying for you, and Savannah sends Raina a big hug!
- The Smiths
I also was directed here from Little Moon Photography. Your family has captured my heart, I am thinking and praying for Raina and your family during this extremely difficult time.
ReplyDeleteMeagan
Courtney and Jason, I have been following all that you have been posting and I pray for you and Raina daily. As Emily posted, we are getting a team together to walk "Race for Hope" On May 1st. I just got done registering the team and wanted to pass on the information. The Team name is " Racing For Raina" The team company is " Martine & Emily" And the Team Division is " Friends and Family" There are many staff and their spouses that want to walk/run it. We are also hoping to get teams shirts made up. Please give Raina a big hug and kiss from all her friends at the center.
ReplyDeleteLove Martine