It is with great jubilation and elation that I have the privilege to write part 2 of my blog post this week about the fantastic news of another stable MRI scan that was done at St. Jude Children’s Research Hospital this past Monday.
Once again, I felt the extraordinary care, concern and compassion from the incredible staff at this magnificent hospital that I consider to be one of my homes. Here are a few of Marit’s and my favorite people who have known us for seven years:
Lauren-Marit’s Darling, Awesome Physical Therapist
Jacquie-One of our favorite people now working in the MRI room whose words brought me comfort many times throughout treatment.
Interestingly, you may think that the kids who come here for treatment might have a negative association with the hospital after the often brutal treatments they endure. It seems to be quite the contrary for the children we met and knew here. Remarkably, even most of children whom we met who passed on to the next life, indicated that they wanted their parents to continue helping the hospital. In my opinion, that is a true testament to its merits in a very important way.
I am always anxious when visiting the hospital for scans. This visit was no different, even though I felt Marit was well and has been overall very healthy all year. I’m not sure I can accurately describe the magnitude of stress I feel while waiting for the scan results, but I do know that once I hear or read: “Scans are Good!”, I feel like I can actually breathe again. I asked Marit’s phenomenal neuro-oncologist, Dr. Gajjar, to reiterate for me that he is now more concerned about long term effects of the treatment versus the cancer returning. Indeed, his parting quote was this: “Let me just say that it’s very unlikely the cancer will return now!” Hearing that was music to my ears. Knowing him as I do, he is not one to remotely sugar coat anything. (I realize long term treatment effects are worrisome too but it beats the alternative).
Marit pictured with Dr. Gajjar:
After posting the good MRI scan results on my FaceBook page, a high school acquaintance and fellow Orono community member had written the following in the comment section: “Woo Hoo! Cancer in the rear view mirror! Celebrate today and every day!” For some reason, this comment really positively impacted me for several reasons. For one, I happen to know this person has not been untouched by cancer, therefore I feel she has a closer understanding. Secondly, I really liked the image of cancer from the perspective of distance after seven long years. I know I will never forget nor will I ever stop wanting to do what I can to help St. Jude and others as a result of my own personal experience. That said, it just felt nice to have that new image of cancer from afar in my head. Thirdly, it is a distinct reminder to celebrate each and every day! So cliche, but so true it is…YOLO! (You Only Live Once).
I received an overwhelming number of “likes”, positive, overwhelming and heart warming comments via FaceBook once I posted the good news. I don’t want to diminish any of them. I am so grateful for the love, support, care and prayers of so many people who have been touched by my daughter’s past illness. I could write an entire blog post just on the many emotions (humility and gratitude among them) I feel from reading the notes from family and friends. That “stuff” sustains me in a way nothing else does. If any of you reading this, who also “liked” my update and/or made a comment, I greatly thank and appreciate it/them.
Sometimes, I am not even exactly sure how to appropriately respond to some of the comments. I recognize that I occasionally feel survivor guilt too. I know that sometimes people say: “You are blessed or fortunate or lucky”. I’m never altogether ok with agreeing that any of that is true because to me, insinuating that, then means that the kids/people who don’t survive cancer’s devastation, are somehow not blessed and that doesn’t feel right to me either. I’ve been thinking about all of this for seven years and still not sure I have the “right” answer. I don’t know if it’s fate, luck, prayers [certainly every parent of a child with cancer (and their extended family, friends, community etc.) prays incessantly]? I know that no one has answers to many of these questions and I am still struggling with accepting that concept too? However, apparently it hasn’t stopped me from continuing to question a lot of it???
So while I’ve been contemplating that yet again this week, I decided to go back in time and reference something I wrote almost exactly 7 years ago on my CaringBridge site: maritkyllofrancis.
Somehow compartmentalizing (if that’s my way of making sense of all of it anyway) it by thinking about it as if these children really are “Brave Little Soul”s, in sync with a grander plan or in agreement with God, somehow helps me. It’s a lengthy post and a long passage but upon re-reading and reflecting, it still makes me tear up to read. I want to believe the concept written in ” The Brave Little Soul” passage, that these brave little souls are put here to unite us all in love through their suffering.
BELOW is my CaringBridge entry I posted 7 years ago on the eve of seeing my baby’s own hair on her head for the last time:
(One of the many long term effects of cancer treatment-“Just Hair” but still, there is much room in cancer research to help mitigate devastating side effects along with more effective cures. That is why I will never stop supporting St. Jude in as many ways as I can).
WRITTEN 7 YEARS AGO ALMOST TO THE DATE:
By berit francis — Jul 12, 2008 1:10pm
Friday, July 11th 2008
Dear Family and Friends,
I just wanted to update many of you about the week Marit and our family has had and share some of my feelings:
First of all, I wanted to let everyone know that unfortunately, our dear sweet Carter, believe it or not, broke his leg on Wednesday night. Michael called me from Children’s hospital on Wednesday night with the news…Of course, I was concerned and all I wanted to do was be there with him, too. As you can imagine, Michael was “beside himself”. Fortunately, it is in his right LOWER leg and does not require surgical correction. He is now splinted and will be casted down here on Tuesday morning. Rather than having Evan here this week with Michael, Carter will stay with us. Crosbie, Evan and Amanda will fly home. Originally, Michael had intended to drive my car down here with the boys this weekend. It seems we are getting signs from above that we cannot plan on much right now.
Marit started her 3rd week of radiation. As of today she has now had 12 out of 31 radiation treatments. She has 19 more to go now. Also, Marit is now officially bald and beautiful!!! The last few days she has been losing hair by the handfuls and it was truly time to make all of it go away. Even Marit was growing tired of picking hair off of herself and her clothes. This evening, Amanda (our wonderful Nanny), Crosbie and myself accompanied Marit to a salon where Marit bravely sat in the chair as a wonderfully kind man, gently took her hair away. [I need to add here that Monday evening, Tom Schmidt came over to our house and obliged Evan, Carter and even Sam (our neighbor) by honoring their request to buzz their own hair in solidarity for Marit’s eventual hair loss. I have seen a few pictures and can’t wait to see them in person. ] I thought I had prepared myself for Marit’s new look but admittedly, I wept as the remaining hair softly fell to the floor. I know some of you have either had this experience yourselves or witnessed others go through this but it is truly a humbling experience to behold. Of course it is just one more reminder that Marit has cancer…The large scar on the back of her head and the protruding shunt from her skull are physical reminders of her already tough battle scars of this dreaded disease. As I wept and Amanda cried, Marit stayed true to her classically strong nature. Crosbie was wonderful and once the hair was gone, we all agreed that she is even more beautiful now than before. Marit watched in the mirror as her hair floated to the floor and when it was gone she nonchalantly stated… “ Well, I must admit, I look a lot better than Britney Spears did when she shaved her head!” I think her big complaint is that her head is cold. The older gentleman who agreed to “do her hair” refused to be compensated for his services. (I hope I can find some way to eventually repay him).
Truthfully, I have moments like this often now where I witness the kindness of perfect strangers and of course many of you as well. It is truly overwhelming and almost spiritual whenever this happens. I have experiences like this daily by the staff at the hospital. I “lost it” twice earlier in the day and people most always have the right thing to say at the right time and somehow I manage to get through my days sometimes if only minute-by-minute. Sometimes I feel such devastating pain and feel like I’m in an abyss that surely must be living hell while amidst it I occasionally feel a ray of hope and can see some light far in the distance. I’ll never forget the first night on the oncology floor of the Minneapolis Children’s Hospital. I had the most incredible sense of hope that night before we returned home and I continue to have moments of hope as I travel this road at St. Jude. I think I am “cautiously optimistic”…and that is as much as I can muster at this point. I never know if begging to God for mercy is the answer, or if quietly finding solace in my faith that God is watching over us all and that he will give us the strength to handle anything to come is the answer. I try both.
I found this poem on another patients Caring Bridge website whom I have met at St. Jude. I did not write it nor do I know who did, but as I read it the other night, I wept and still do each time I read it. I know I am not the only parent here at St. Jude who believes that this was written about their child. Those of you who know Marit well may understand why it resonates with me.
It’s a bit long but please read:
THE BRAVE LITTLE SOUL
Not too long ago in Heaven, there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however, the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen, why is there suffering in the world?”
God paused for a moment and replied, Little Soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts”. The little soul was confused. “What do you mean”, he asked. God replied. Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences, and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.
The little soul began to understand and listen attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately, most people keep it locked up and hardly share with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this- it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer-to unlock this love-to create this miracle-for the good of all humanity.”
Just then, the little soul got a wonderful idea and can hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, I am brave: let me go! I would like to go into this world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!”
God smiled and said, you are a brave soul, I know and thus I will grant your request but even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle: however, they will also share in your suffering. Two of those souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.
God and the brave little soul shared a smile and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear this pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.”
Thus, at that moment, the brave little soul was born into the world, and through his suffering and God’s strength he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys-some regained lost faith-many came back to God. Parents hugged their kids tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives were changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.
Believe in God’s promises….
In closing, I hope for healing and want to believe that with everyone’s prayers for healing, the cancer in Marit’s body will be gone. In the meantime, thank you for your love and support. Know that I appreciate your well wishes and prayers. That is really all I need right now. I know people feel like sending us “things” or food but if you saw this apartment you would realize there is really no room for excess of any kind. It’s a kind thought but prayers and communication mean so much more to me at this point.
I hope everyone is having an enjoyable summer.
Seven Years Later… I do know that for whatever reason, Marit survived and I hope that LOVE is still uniting people through the stories of many brave little souls like Marit. I know I could not have survived this experience without the care and love of others. I truly do feel BLESSED for the presence of others who care about me, my family and for the kids of St. Jude. From the top of the closet thing in Memphis to a mountain, I thank those of you have loved, supported, prayed and cared! My hope is to continue to use all of these gifts and blessings to the best of my ability.
Next Friday I intend to write about a few of the upcoming St. Jude events!
Hallelujah! I am so thrilled to get the great news! That old caring bridge post brought tears to my eyes, Berit. I remember those days with a very heavy heart. I am so glad that is in the rear view mirror! God Bless all of your family!