Well, yesterday was a big day with good news. Today was a longer feeling day but we're definitely starting to get a more complete picture of how fuzzy the picture is actually going to be...if that makes any sense. We learned today about the "Roadmap" of Bella's treatment plan, all the possible side effects of chemo-therapy, met and talked with the last few doctors and nurses of Bella's winning team.
Tonight's entry will be more of the Readers' Digest version as both Val and I have an opportunity to get a more decent night sleep than previous nights. As such, the information may come off a little shocking or abrupt. The key to remember is that Bella has literally an internationally sought out team of doctors that have an very promising success rate treating cancers like Bella's. From prayer, God's path that has lead us here and reading what their peers say about them, we're confident that we're in the right place and that this, in time, will just get chalked up as one of those annoying but valuable life lessons that will lead us all to a longer, healthier life and life style.
Our morning began very early with the official orientation with Bella's oncologist Dr. Violet Shen. She is amazing and has an amazing team. I feel like we all have been adopted by her nurse assistant Julene…Julene has been working with Dr. Shen, like forever, and has been in Hoag Pediatric Oncology, transferred with the Hoag migration to CHOC (Hoag moved several of their pediatric specialties to CHOC several years ago to facilitate easier health care solutions for pediatric patients). Julene will be our main point of contact and it’s easy to see how she will become a new part of our family – an indication of how much peripheral support will be receiving as we traverse through the trench warfare of treatment.
Tonight's entry will be more of the Readers' Digest version as both Val and I have an opportunity to get a more decent night sleep than previous nights. As such, the information may come off a little shocking or abrupt. The key to remember is that Bella has literally an internationally sought out team of doctors that have an very promising success rate treating cancers like Bella's. From prayer, God's path that has lead us here and reading what their peers say about them, we're confident that we're in the right place and that this, in time, will just get chalked up as one of those annoying but valuable life lessons that will lead us all to a longer, healthier life and life style.
Our morning began very early with the official orientation with Bella's oncologist Dr. Violet Shen. She is amazing and has an amazing team. I feel like we all have been adopted by her nurse assistant Julene…Julene has been working with Dr. Shen, like forever, and has been in Hoag Pediatric Oncology, transferred with the Hoag migration to CHOC (Hoag moved several of their pediatric specialties to CHOC several years ago to facilitate easier health care solutions for pediatric patients). Julene will be our main point of contact and it’s easy to see how she will become a new part of our family – an indication of how much peripheral support will be receiving as we traverse through the trench warfare of treatment.
Of greatest significance from the meeting, we now have a “roadmap” (that’s the term they use for her treatment plan) that covers the three phases of treatment. The first phase will include daily chemo-therapy with vincristine and carboplatin. The second phase (maintenance phase) includes a different cocktail (maily cisplatin). Then a final phase which includes mostly accutane. This is the very watered down version of the chemo…we have a binder that’s about as thick as our thin-line bibles…yeah, we have lots of reading to do!
Our daily life starting most likely this coming Monday will include an hour or so in the outpatient chemo infusion center here at CHOC then about an hour across the street with radiotherapy (first session will be a bit longer). I’ll clarify, daily means Monday through Friday treatment…she gets the weekend to rest up…we expect her to experience the fatigue side effect and most likely nausea. If I forgot to mention it before, yes, she will lose her hair. She’s loving the idea of wearing hats and also the pierced ears we’ve promised during one of the breaks in therapy and the Chihuahua I’ve promised we can adopt pending the finding of a new home for the Guinea Pigs.
The time line consists of:
Phase 1 – 6 weeks Chemo-therapy (CT) and Radiation Therapy (RT)
6 weeks break, progress evaluation based upon MRI scans and I’m assuming bloodwork.
Phase 2 – (this one was a little fuzzy so I may be wrong) a four day stay in the hospital for CT, every four weeks, for six months. – progress evaluation
Phase 3 – 6 months split 2 weeks on chemo, 2 weeks break – final evaluation
Then, recovery…hair grows back, social workers and psychological (and physical as needed) assistance will continue. Bella will be under CHOC’s care and evaluation until she’s age 22 and then will be passed on to a team of oncologists specializing in treating adults.
So, all in all, about 14 months of treatment that provides a 70% likely-hood of full recovery (that’s the harsh part I mentioned earlier…there’s just no way to candy coat that except…it’s a hell of a lot better than 50%).
There’s so many services that CHOC will provide to help all of us weather this storm that has brewed and ready to make landfall. It’s become very clear to us that we’ll be needing lots of help…I truly hope that my stand-off-ishness has not discouraged your desire to assist or gave the impression that help wasn’t welcome. Now we know a much better picture so we’ll be able to ask for the type of help that we’ll need. We’re obviously going to have to work out and discuss how we’re both going to be able to handle our employment at the same time as providing home schooling for Bella…she really won’t be able to return to school until this is done and we’ve won this battle. There may be more battles ahead (ie chance of repeat malignancies of this cancer or development of other cancers as a side effect of the chemo or radiation are possible) but we’re going to focus and win this one first.
I’ll be writing more, hopefully tomorrow afternoon, and hopefully from home, on ways we will be needing help. So many of you have offered to help in so many different ways and, I can guarantee, that we’ll be needing that help that you offered. We so unbelievably humbled and deeply grateful for the love, support and offers of help that have blessed us since we first came in. I realize it’s cliché, but there really aren’t words that adequately express how deep we feel this gratitude. Both Val and I cry each time an offer to help comes through…heck, I cried over my Starbucks Americano this morning! Thanks so much Irene!!! It was a life-saver! And, again, thank you everyone! Welcome to our family!
The other main event of the day was talking with Bella’s (and, to an extent our) neuropsychologist, Dr. DiPinto. They did an exam today to get a psych base-line of us to monitor our response to CT and RT. We discussed much about the possible side effects that will potentially inhibit Bella’s independence and/or learning/living abilities. Will share more as things progress.
Again, we can’t thank all of you enough for your prayers, thoughts and love you send Bella’s way and our way as well. You’ve helped us maintain strength and composure (most of the time) which has really helped Bella be…well, Bella! She’s been in great spirits and has shown so much patience, strength and confidence. She is an amazing angel that we’re all learning so much from every moment of the day! Bless her heart (and especially brain!). Our survival, each of us, is so much thanks to the tenacity of human nature and the human spirit – all a gift of the grace of God and His spirit through Christ that He has installed in each of us.
There were many more adventures and discoveries from today, however, going to sleep before 1 am sounds very appealing. So, until next time, thanks for the blessings of prayer!
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