Raina was in the hospital this morning to have a central venous catheter put in. This will make administering her chemotherapy easier, and will hopefully enable us to dodge any (many?) future IVs, which Raina hates with the intensity of a hundred burning suns. Everything appears to have gone according to plan. She is comfortable, though a bit groggy. We are planning a wagon ride and a long nap for this afternoon. I promised her when she got out of surgery that I would make her great grandma's apple pie.
The oncology team also did a spinal tap to test for any tumor cells that have migrated into the cerebrospinal fluid. We are banking on them not finding any, but it does not appear it will change the course of treatment in any event.
We reviewed the chemical cocktail this morning that Raina will be subject to next week. Lots of stuff. Lots of side-effects. Fortunately many of them pale in comparison to the side effects of unchecked tumor growth.
Jason,
ReplyDeleteI am not writing this to shower yet more sympathy and grief on you. Raina is Beautiful, alive!, and has a strong spirit. And I can see you and Courtney are both fighters and are doing your best to win victories for her. This is the time to be there and fight for and with her, in the present, and Now.
I can tell from your writings that you have started asking yourself questions so deep and profound that the nouns & verbs you are typing don’t even go far enough to express the myriad of thoughts, emotions and quandary you must be going through as a father.
Ive only known you as a co-worker, but from the Day I met you, I’ve always admired your solid character, knowledge, wit, and well-rounded intellect. I am older than you, but yet I look up and admire to you in so many ways.
I am convinced that this life we’re in has a more deeper meaning than we have the capacity to understand with our corporeal senses. I don’t profess to know what the answers are, but I would like to impart on you that I feel even your daughters life on this earth has even more impact, beauty and light than many world religious leaders and public figures. And hence has a purpose to be served. I am personally affected by the strength of her presence. And man, I have never seen a person who likes Chai as much as that young lady!
The ways you are handling this unfortunate tragedy; keeping it together for Raina’s sake, yet able to be profoundly honest and open about what you are going through in the present, is yet again another example of your steadfast character and internal greatness. I Love you both Jason. I will keep you, Courtney and Raina in my every thought, prayers and contemplations. And I am here with you and for you in any practical way you may need going through this, even if nothing comes to mind just now...
~Samson
Hi, A friend of mine directed me to your blog. I am so sorry to hear of Raina's diagnosis. Our daughter, Evy, was diagnosed with AT/RT in Nov of 2009 and she is now thriving, cancer-free. We live in Stafford and were treated by the Children's National Oncology team. If you would like to correspond, my email is jekyomail @ yahoo dot com.
ReplyDeleteAll my love.
Hi. I guess my story of coming across your page is no different than the ones above me, so we'll move on :)
ReplyDeleteI'm so deeply sorry to read the struggles your little girl is having to go through.
It's such a horrible world when kids, so young, have to deal with these things.
Just remember, in the end, it really is harder on you than it will ever be on her.
My daughter is currently battling cancer as well.
She was diagnosed when she was 10 months old and has been undergoing random treatments since then.
She will celebrate her 3rd birthday in July so, so we are counting our blessings.
Please, feel free to write me back, blog or email. I have learned, although I haven't found many, but it does make things go a lot easier to talk to someone going through the same things.
(smithfamily_est2005@yahoo.com)
My thoughts and prayers are with you guys - Courtney.
I learned about your blog from a friend...even though I don't know you or your wife or your beautiful daughter, my thoughts and prayers go out to your family. I'm so sorry. Take care and many hugs.
ReplyDeleteThinking of you today, as Raina jumps in to that proverbial ring. Let the fight begin. Go get em Raina!
ReplyDeleteOur thoughts, prayers and positive vibes are with you.
Hi as well, hope you don't mind random posters. Our now 10 month old Casey has been battling this same beast for 4 months now, it is a very hard road to say the least.
ReplyDeleteWe are being treated by the CNMC group at INOVA Fairfax, though we've been to DC as well a few times. Jill directed me here, are you local too?
I highly recommend checking out cbtrf.org, a great resource to connect and share info with other parents in this exclusive club. We are C's_Family there, you can contact us there, and learn more about us here:
http://www.caringbridge.org/visit/caseykropf
http://beachjar.blogspot.com/
We are happy to help in any way we can, and so sorry to hear that you will be going through this same journey.
Best, Jessica, Casey's Mommy
I think of you daily and cannot imagine what you must be feeling, but please know that there are many people praying for you both and beautiful Raina.Please give her a big hug and kiss from all of her friends at Children's World.
ReplyDeleteI was directed here via a friend that shares your photographer - your words, the adorable face of Raina, the courage you all have... you've just touched my heart and I am praying for you. Wanted you to know - that's all. So many are thinking of you and here to support even if only virtually.
ReplyDeleteJ, V, and Little V,
ReplyDeleteMakes me happy to see so many people posting on your blog, thinking about you and praying for you. You're such a tough, brave and amazing family -- I'm so proud of all of you. I am thinking about Raina today and sending you all love and hugs and *soft kisses* across the miles. I will see you again soon.
Aunt Kimmer
I heard about your story from a mutual friend. Cancer stole my ability to have children, but I am a survivor. My battle ignited the fire that drove me to become involved with Relay for Life. I’m adding your little girl to my list of reasons to continue the fight against this ugly disease.
ReplyDeleteI cannot imagine the myriad of emotions you must be experiencing, and am so sorry that you’re having to deal with this. I wish I could do more, but know that I’m praying for you & your beautiful little girl.
Hello....
ReplyDeleteI was looking at one of my favorite photographers blogs and was so captivated by your little girls beauty I re-directed my focus to reading your story. I must mention- your famiily is beautiful, what a gift she is.
I am at a loss for words reading your story, I guess in times like this it is hard to know exactly what to say to express what you feel- I must admit I laughed outloud when you spoke about hitting the person in the face that came up with the phrase when life hands you lemons make lemonaide- I agree my friend. I have not had personal struggles with cancer, but have many loved ones who have. I also am a mother- and as I read this feel the pain that you do. My heart goes out to you and your family.
I have 2 young children and one on the way, I can relate to the love you have for her and the feeling of helplessness with not being able to just wipe the tears away and say all better. I will keep you and your family in my thoughts and prayers- and will look forward to now keeping up with how she is doing.
You have a friend in Westminster, Md.
Erin Gaeng
gaengphotography@hotmail.com
Although I dont know you- I was directed to you by Little Moon- I was so struck by your daughters story. I have been thinking of you every day since first seeing her pictures. I pray every day for her...bless you all. There are not the right words to express sympathy for what you are feeling, but as a mother I can only begin to feel the ache in my heart for having a child go through this.
ReplyDeleteI was forwarded your information through a friend. My son, Declan, was diagnosed with AT/RT last year. I would love to tell you his story ends as happy as his good buddy Evy above but it did not. I only tell you this so I don't blindside you with this information if you decide to reach out. I will also tell you, your blog reminded me of our outlook (and many others you will come to know along the way)...today is a truly a blessing. Your outlook will support you in more ways than you will believe now. We had many, many blessed days with Declan.
ReplyDeleteI would be happy to help you in any way I can to navigate these waters. Please feel free to contact me sherri.carmical @ gmail dot com
Please know, I will be praying for Raina and your whole family.
All my love, Sherri
"There is no greater prayer than that of a mother for her children. These are the purest prayers because of their intense desire and, at times, sense of desperation. A mother has the ability to giver her heart to her children and to implore mightily before God for them." --Betty J. Eadie
ReplyDeleteEvery day I pray for your precious baby girl and for God to give you the strength to move through each day. Though we are strangers I wanted you to know you are in my prayers. Christine