The Known and the Unknown: what lies ahead

One of my favorite quotes, "What lies behind us and what lies before us are tiny matters compared to what lies within us," speaks to me through Charlotte at this moment. She defines this in many metaphoric and symbolic ways.
Optimism has its place when going through something like this. Our fears creep up as naturally they should, but optimism shines through the darkness and reflects hope and possibility at our darkest moments. Optimism is a choice. But it is not meant to exist in any contrast to reality. It should not distort but reveal another side of the possible. This is how we choose to cope. And so I wanted to write this message to all of you who are cheering your hearts out for Charlotte, and praying up a storm as she tackles this disease because my posts can read optimistic in nature (and should because I usually write them from that place in my heart) but I do not mean to distort any reality. Many of our beloved village members have reached out to us personally after Charlotte's successful surgery with an impression that her road to being cured is almost over. That perhaps because she has responded so well to the chemo and that the successful surgery means it's almost over. And it's with a heavy heart that I needed to explain how we have only just begun. And the giant silent sigh that fills the air between us is there...because our little girl IS doing amazing things but what is being asked of her has only scratched the surface of our sweet little two (AND A HALF! she'll yell in her tiny mighty voice) year old baby girl.

I realize I haven't written about her entire protocol (course of treatment). Only those whom have sat down with us at length would know. And the fine details will still be filled in as we approach each phase. Grab a cup of of something warm like tea or sweet like wine or strong like bourbon because this, my friends, is a long one and there isn't an easy way to say it:

There are 3 phases technically: induction, consolidation, maintenance. Charlotte is about to finish induction, the first line therapy which employs chemotherapy and surgery. Her induction phase consists of 6 rounds of chemo to deaden/shrink tumor and surgery to remove the main tumor. They used 6 different chemotherapies with various infusion times because neuroblastoma is smart and can stop responding to chemo so they have learned best ways to mix it up and out smart it. Aug 5 will be the first day of her last round of chemo during the induction phase. Each round has been 21 days (several days of chemo followed by recovery). Big milestone. Check off checklist! YES!

Then Aug 26(ish) begins the a new phase of her protocol: consolidation. Consolidation therapy will kill any remaining cancer cells in her body that the first 6 rounds of chemo and the surgery couldn't get. Charlotte will enter this phase in late August we believe. She will be admitted for two months in isolation in a special unit within the Duke Hospital. She will be given very high dose chemo, some new to us. The chemo is highly toxic and the effects can be devastating. We pray she can tolerate it with mild effects. It will eradicate cancer that may be hidden in her body and in her bone marrow. Sleeper cells we call them. It will kill her bone marrow as a side effect. They will then give her a stem cell transplant with her own stem cells we harvested back in April! She will not have any immunity and will be quite sick during this time in isolation. I will be with her the whole time (and very prepared with fun activities and movies and books and games and crafts galore as she can tolerate). Brian will come once or twice a week and stay with her, giving me time to go home to see the children and him time to care for Charlotte. He must work and so this will be a very tough challenge for us all in many ways. The children will be able to come see her at various times too. And after a month of this and she is ready, we can bring her home for a couple weeks...and then our minds and spirit must be strong because we will have to bring her back in for another full month in isolation to repeat exactly what she just went through. It's called a tandem stem cell transplant. Research has shown children have a better outcome long term if this is process is repeated. So they will administer the same high dose chemo with a stem cell rescue as before. It will be heart breaking to watch her get well only to have to relive that again. But we must be strong. It is the only way. We don't have another choice or this cancer will come back.

The calender now brings us through October when her tandem Stem Cell rescue will be completed. The last part of consolidation is out patient! Horray! But it is radiation. She will have a full month of radiation. Every day Monday through Friday. Unfortunately, she will be sedated during this so that she remains still. The radiation will be locatized.  It will be everyday but not all day.  Apparently radiation doesn't take very long but the sedation process will add time to this procedure.

Now, after consolidation, we pray she is in remission. That no cancer cells are detected in scans. And if she is, we enter the longest phase yet. And unfortunately part of it will be excruciatingly painful for Charlotte. But this is where she can begin to focus on keeping the cancer gone: Maintenance.  The first part of Maintenance is 5 months of antibody therapy. This is where the latest research has shown how someone with Charlotte's specific neuroblastoma has a much better prognosis now. This Immunotherapy is a game changer. She will have pain that we care not to face at this time but the hospital has ways to manage as so she will be admitted 1 week each month for 5 months while her body undergoes antibody therapy which will target and teach her own body to target neuroblastoma cells, destroying them before they can metastasize and form tumors in her body. After 5 months of this therapy, she will have oral chemo at home for 6 months. And after that...we will probably still not rest. We are learning and educating ourselves to be prepared with any further therapies that might be safe and possible for someone like Charlotte. So we can not only defeat this monster right now, but keep it from coming back and stealing anymore away from our little girl. That is what Charlotte's specific type of neuroblastoma does. It is highly aggressive and the specific n-Myc amplification in her cancer's genetics creates a reality for us to understand. Relapse is a possibility. But she is showing us and we pray God can continue to work through her to show us all that this monster is no match for her. No match for him. And as he works through Charlotte, through me, through Brian, through the medical team, through each of you, we will keep going and keep moving. There is no other option.

Wearing a prayer shawl made my friends of my Stepmother, Dottie.  Friends of her friend Hilda at church.  Just beautiful.  We have so many people from all over the world praying for Charlotte.

Charlotte says she is going on an adventure to the polar ice caps to "hunt for polar bears".  Its 98 degrees here.  God love her and her imagination

A family member, Eloise, who is a pastor at a church out west also had a prayer shawl made for us.  Its beautful and I feel at peace wearing it. 

prayer shawl

needless to say we are trying to keep up with Charlotte.  She has been home for almost a week and still doing great!

Surprised daddy at his office!  Kids playing at his desk.  Our 3 amigos