My Daughter’s Disease — via E-mail
By Suzanne Leigh
From: Natasha’s parents
Natasha has a brain tumor. We are at the pediatric ICU. We should get the results of an MRI tonight and know a bit more soon. Natasha had a CT last night that showed the tumor. Suzanne had taken her to the optometrist because she was complaining of double vision.
We don’t want to believe this is happening.
From: Natasha’s parents
Natasha is out of surgery. All things considered, she is doing great. She doesn’t need oxygen or morphine. The neurosurgeon is very happy with how the operation went and feels the entire tumor was removed. We don’t know yet if this is a higher-grade (III) brain tumor or a lower-grade (II) one. There is plenty of scary stuff on the Internet about this type of tumor. I think radiation will be considered, but there is no evidence to show that this type of tumor responds to chemo.
(Following a second craniotomy to remove scarring, which her neurosurgeon was concerned might have been residual tumor. She also required additional surgeries to clean the area around the bone flap due to “pre-meningitis.” Eventually this part of the bone would be removed and Natasha would wear a helmet for six months to protect her brain until she was well enough to undergo a bone graft.)
I went to see Natasha’s radiation oncologist this morning. He surprised me by saying that radiation was not only recommended, it would be irresponsible to consider not going this route. He said that the latest pathology report that had been approved indicates this is a grade III (anaplastic) tumor. When I asked him about long-term survival, he said it would be about 50 percent. Not the figure that I was anticipating.
Natasha has anemia, which is making her very tired and listless. She flops to the ground if she is standing longer than a minute or two and gets tired just walking from the parking lot to the doctor’s office. It is so sad to witness this in a little girl who would cheerfully do 13 cartwheels at 2 in the morning. Her wound has started to leak cerebrospinal fluid again. The concern is this is pre-meningitis again …
Today Natasha is doing better and is behaving with her trademark outlandish goofiness. We are starting to feel more hopeful …
Last week I had an awful vivid dream in which her cancer had returned and had spread all over the brain. She was sitting up in bed and smiling at me. I knew the end was near. I leaned over to her and said, “Natasha, I am going to miss you so much.” When I woke up, I didn’t feel relieved. Just unbearably sad, because the dream was so real.
Natasha had another clean MRI! We are euphoric. We will be in remission January 2013 if the clean MRIs continue. We’re learning that the weeks leading up to the quarterly MRIs are very, very difficult. I think we both find a private place to cry every single day. The ramifications of this scan are so absolute and so potentially devastating. But right now, we’re inventing a new normal. It’s a very different normal, but today (at least) we are so grateful that our Natasha looks and behaves like a healthy child. We are also grateful to Marissa for her sweet nature, her protectiveness toward her sister and her swiftness in bringing me a blanket and a teddy whenever it looks like mom might be about to cry again(!).We are so lucky to have our gorgeous kids. Nothing else matters very much.
(Following conformal radiation and four cycles of chemo, Natasha rebounded to her old self. But a routine MRI showed the disease was back.)
Devastating news. The tumor has metastasized to other areas of the brain. The prognosis is very poor. This is the worst day of my life. I am not ready to talk about it to most people, so please keep the news to your family for now.
I love my child so much. She deserves a long life. Why would this happen.
To: Online support group for parents of patients with Natasha’s brain tumor type
Natasha was diagnosed with a grade III tumor at age 7. Her neurosurgeon was very pleased with her gross total resection. She lost some peripheral vision, but after she had recovered from treatment, nobody would have guessed that she’d suffered from a malignant brain tumor. At age 10, Natasha was re-diagnosed. This time, there were three microscopic nodules. One was surgically removed (GTR). The other two were Gamma Knifed. We then underwent craniospinal radiation. Despite severe fatigue and missing most of fifth grade, she continues to get very good grades at school.
Two clean MRIs later, I started to get concerned about Natasha. Today, our neuro-oncologist said she saw a 1cm nodule. We might do Gamma Knife.
What else to say: I love my child. Always felt honored to be her mother. Always felt I’d take the bullet for her in a heartbeat, with a smile on my face because her life is worth so much more than my own. She is a great kid. Big heart. Can’t walk past a stray animal or a homeless person without worrying about them. Yesterday she made cards for me, her dad and her little sister, thanking us for being “the best in the world.”
Hoping you guys can offer me some encouragement.
(Following an MRI with multiple nodules after 16 months of clean scans, with ongoing fatigue and low blood counts possibly due to bone marrow dysfunction of undetermined cause.)
To: Bereaved mom friend
Yesterday came pretty close to being the worst day of my life. We met with our neuro-oncologist to discuss the scans and treatment. I was well prepared for the conversation and knew very well how grim Natasha’s prognosis is. But hearing those phrases –- “desperate situation,” “buy a little time,” “think about taking a vacation now” –- were knives to my mangled heart. After this conversation, we returned to Natasha’s room where she was having blood and platelet transfusions. She had two of her friends there and was holding court with a big box of chocolates and a bigger smile on her face. Exhilarating and excruciating.
Natasha says she is too weak to want to go on vacation. She is enjoying having some of her friends over, but gets stressed when she can’t match their energy and exuberance. I feel so, so sad for my poor girl.
I feel so alone (we both do). I can’t maintain my capable mom visage. Marissa made a reference to “when Natasha is in high school.” That would be in two years’ time. I crumbled. Thank God I was driving and she couldn’t see my miserable face.
Natasha suddenly became disoriented last night. She was unable to form words and started stumbling around the house, seeming confused as to where she was. No stroke. Didn’t seem to be a seizure, doc says. Tumor progression, I guess. I don’t want to know.
What has been especially devastating these last two weeks is that Natasha is no longer Natasha. She is quiet and reclusive and her very poor short-term memory means it’s hard for her to follow what’s happening around her. She will eat dinner and then ask me what we’re having for dinner; go with me to the market and then deny she’s just been there. While she used to spend hours painting and drawing, and decorating her clothing with buttons, she now stares into spaces or just lines up those beautiful buttons repeatedly. It’s hard to put into words how sad this is.
We’ve closed down to most people. We don’t respond to most e-mails or calls. We just keep out of people’s way. We have nothing to say.
I love you, my special peanut!
Love you too Mama : )
To: Parents of Natasha’s friends
Our precious Natasha is not doing well. Her gross and fine motor skills are compromised; her short-term memory and sense of orientation more so. She misses her friends. If you can stop by, please let your kids know that Natasha is very delicate and is on many meds that affect her memory and balance. She would appreciate them just being there for her and talking, even if she doesn’t say much herself. She might like them just to hold her hand, if your child is comfortable with that. Or they could talk about old times. They could also use Natasha’s beads to make a necklace (Natasha is not able to do this anymore, but she will still participate).
A few caveats:
Keep the visit short
Please no mention of death or dying or tearful goodbyes (we are hoping there will be lots of goodbyes)
Please keep the focus on Natasha
Thank you for thinking of our #1 girl. She has been and remains a loyal friend to your kids and loves them.
To: Relatives and friends
From: Natasha’s parents
Natasha died today at home. She has been especially agitated the past couple of days, but from what we could tell she wasn’t in intense pain. Thanks to everyone for supporting us throughout this ordeal.