Meet Anthony – Brain Cancer
Hope session by Birch Tree Photography | Facebook | Instagram
Meet Princess – Ganglioganglioma
Princess is very outgoing. She loves babies and dogs. Her special interests are Star Wars, Pandas and Unicorns. She also likes to dance and rock out to her “jams”.
In March of 2016, Princess started to experience weakness on her right side. Initially, the doctors at the ER told us that it was a side effect of a medication she was taking. A month later, when things got worse after stopping the medication, her pediatrician referred us to our local children’s hospital for an MRI. After the MRI, we were told that she had a mass in her brain (Ganglioganglioma). Brain surgery was scheduled for the next morning. Subsequent MRIs, in the months and years following the resection were clear. That is until this past May when a new tumor was spotted. Princess is currently taking oral chemotherapy to help shrink the tumor.
Princess has dystonia due to the brain tumor and she has OT and PT weekly. Then every 3-6 months she receives Botox injections to help loosen her stiff muscles. The dystonia has also affected her jaw, swallowing and digestion. In November of 2017, she had surgery to have a G-tube placed after many procedures to determine why she was losing weight. At camp her G-tube fell out so we are currently going for weekly weigh ins to see if she can maintain weight on her own. She has had numerous blood draws and MRI’s for the past two years.
Cancer has changed many things about our life. Due to her diagnosis and treatment, she fatigues easily, has limited use of the limbs on her right side and cannot swim or ride a regular bike. She misses a lot of school due to her various therapies, doctors’ appointments and procedures. I, her mom, take her to these since I am her full time caregiver. In the summer, my husband joins us at these appointments since he’s off for the summer. We also seem to spend a lot of time at the ER.
On top of her cancer diagnosis, Princess also has autism and bipolar disorder. She is a warrior princess.
Hope Session by Simply Sara Jean Photography | Facebook | Instagram
Meet Mila – Brain Tumor
Mila was a natural born athlete who was playing hockey 2 days before diagnosis. With all that has happened to her she has pushed herself to relearn all the sports she loves like hockey and soccer. She laughs at all silly things and has an infectious smile. She is shy at first but will come out of her shell in time. She loves her family and brothers more than anything and always comments how thankful she is that God gave her to us.
In January of 2016, Mila was diagnosed with a brain tumor. She had been experiencing headaches and was lethargic. Treatment has included tumor resection, radiation to the brain and spine, surgery to insert a port-o-cath for chemotherapy and a gtube for feeding, chemotherapy, and eye surgery. As a result of the cancer and treatment, Mila has experienced hearing loss and poor balance and coordination (that she works with a physiotherapist to correct).
Cancer has immensely changed our lives. We have been on an emotional roller coaster ride that has resulted in all three of our kids feeling depressed and anxious but, through it all, we have also grown closer.
Hope Session by Rachel Limbeer Photography | Facebook | Instagram
Meet Dominic – PNET
Dominic had a seizure at 16 months that led to his diagnosis. He received 6 cycles of chemo with an auto stem cell transplant. He was in remission for 6 months. He had another seizure which led to us finding out on his relapse. We then did 30 sessions of proton radiation and thank god he’s back in remission for 9 months now.
Hope session by Stacey Vukelj Photography
Meet Lily – Brain Tumor
Lily loves to dance and sing. She brings joy to everyone around her.
Around 5 months we noticed that her eyes started wiggling back and forth, MRI was done and showed that she had bilateral tumors on her optic nerves. She has been through 6 chemotherapies and 1 clinical trail. Due to the tumors being on Lily’s optic nerve, she suffers from low vision. We are hopeful to find a treatment to stop the tumor from growing.
Lily started her first treatment at 7 months of age. She has spent most of her life on chemotherapies and most recently a clinical trial. It is both an emotional and financial stress on our family. Lily has 3 older brothers and it can be most difficult for them.Much of our focus has been on getting her well and it makes it difficult to focus on her brothers. The financial and emotional burdens of this disease are difficult.
Hope session by Joyful Gestures Photography | Facebook | Instagram
Meet Charlie – Craniopharyngioma
Charlie is a kind, sweet, beautiful girl. She loves reading and can easily get lost in a book, especially if it’s Harry Potter. She’s on the newspaper club, is President of the K-Kids club (a club which collects snacks to donate to the local oncology unit for kids in need – how ironic!) and was voted, via interview with faculty members, onto the Student Council. Charlie is wonderfully empathetic, but also has a sharp sense of humor that lets her keep up with just about anyone. She adores watching “Try Not to Laugh” videos on Youtube and has no problem laughing loudly and hysterically in the middle of a crowd.
Leading up to our cancer diagnosis, we were living normal, healthy lives. Charlie had no symptoms that we were aware of. We live in Connecticut, near Yale University and had received a mailing looking for 9-10 year old volunteers for a nationwide study, which Yale was participating in, called the Adolescent Brain Cognitive Development (ABCD) study. The study involved questionnaires, brain games, functional MRI’s, etc. and offered compensation. Charlie was super excited – science AND money? Perfect. Charlie enjoyed the first appointment well enough and geared herself up for the super long research MRI. That was on a Sunday afternoon. The phone call came first thing Monday morning. The director of the study let us know there had been “an incidental finding” and Charlie had a tumor on her pituitary gland. The hope was that it was an macroadenoma, which oftentimes requires no intervention. Unfortunately, that wasn’t the case. We quickly found out that it was likely a craniopharyngioma that was compressing Charlie’s optic nerve. It was described to us as a “sticky, locally aggressive” tumor, and since she had already, unbeknownst to her or us, lost all of her peripheral vision in both eyes, it required surgery.
On August 17th, the neurosurgeon successfully removed the vast amount of the tumor. Recuperation was very complicated. Charlie was in the ICU for 7 days and then on a regular unit for another 7 days. She lost all endocrine function, as that is controlled by your pituitary gland and our “normal” was gone. Nonetheless, she did recover and recovered well. We achieved a “new normal” and thought we had done what we needed to do. But craniopharyngiomas are highly likely to grow back and after a routine follow-up MRI three months later, there appeared to be some growth of the remaining tumor and radiation was recommended. Proton therapy, a form of radiation, was recommended, but not available at our local hospital and thus, we ended up here at St. Jude Children’s Research Hospital, hundreds of miles away from home.
I want to say that Charlie isn’t letting this limit her. But, the reality is, life has changed. Her neurosurgeon has her on restricted physical activities and her loss of endocrine function makes life a bit more complicated. She has several conditions that are limiting, all of which fall under the umbrella of panhypopituitarism. She’s takes medication three times a day and has to pay careful attention to her fluid intake and output. Now that she’s receiving radiation, her energy levels are much lower and she really benefits from using a wheelchair for longer outings (zoos, museums, etc.). I’m was never a helicopter parent before, but I surely am now and that really goes against what a typical 10 year old wants and needs.
In more ways than I can express. Our “normal” is so different now than it ever was. Every day meds, three times a day. 504 Plans and Emergency Action Plans. Emergency meds that have to be with her or near her at all times. A notebook to track her fluid’s and symptoms. Her endocrinologist in my favorites on my phone so I can contact him quickly. A constant struggle to keep her safe and let her be. A constant struggle to give enough attention to her brother. A constant struggle to maintain work/home/Charlie’s medical issues balanced. Charlie is in Memphis receiving treatment and her father and I are taking turns being with her and being with her brother back at home.
Hope session by Mary Slone | Facebook | Instagram