Sunday, March 19, 2006

Tough winter, here's what I wrote

The past few months have been whirlwind of doctor’s appointments and traveling and letting some pretty strong news sink in. I wanted to start a diary for Georgia, so that, someday, she will be able to read what her second year of life was like. I figured I might as well send it out to our family and friends, so that you all have the updated version of life with Georgia. If you don’t want to receive the updates, please e-mail and let me know. If you know of someone who does want to receive them, please send me their e-mail address. Feel free to forward this letter.

Georgia has had an enlarged left kidney, which we knew about before she was born. It hasn’t caused her any trouble, and the doctors have been monitoring it on a fairly regular basis to ensure that it continues to function normally. We have been going to CHEO (the Children’s Hospital of Eastern Ontario), about a 2.5 hour drive from our home, to see her pediatric urologist about every 3-6 months.

At the ultrasound in early December, they noticed that a lump over her right adrenal gland was growing. Now, it’s been there since birth—babies can have hemorrhaging during labour, and she had a hernia on that side in her groin that affected her ovary (that’s the surgery she had at 7 weeks of age), which lives near the kidney as well. But hematomas (the leftovers of hemorrhage) don’t grow. We were scheduled for an MRI.

The MRI had to be done under general anesthetic. The machine makes very loud noises and she has to stay still inside it for about 40 minutes. She did great.

The MRI showed that the lump had indeed grown, and we were referred to an endocrinologist and a surgeon (coincidentally the same surgeon who had repaired her hernia). They were concerned about an adrenal tumour, and the endocrinologist ordered testing to find out whether it was producing adrenal gland hormones. There were several tests ordered, including a 24 hour urine collection (ask me about it someday—collecting every drop of pee that comes out of a toddler). The surgeon saw her and the surgery was scheduled for January 6th.

Pre-surgery, the tests all came back normal. They were pretty sure it was a benign tumour called a ganglioneuroma. Georgia was admitted the day before her surgery. She had to be given an electrolyte solution through a nasogastric tube to purge her intestinal tract so that the lump could be removed by laparoscope. She was a trooper, even with litres (it seemed) of stuff coming out of her body all night.

On Friday, January 6th, 2006 (a date I will never forget), Georgia had laparoscopic surgery to remove the lump. The nurses and doctors were wonderful. The anesthesia resident took her from my arms and she went willingly. The little darling was so interested in the hallway down to surgery, she didn’t look back.

After the surgery, a few hours later, Dr. Rubin took us into a little room off the waiting room. If they take you into a little room with a box of Kleenex and a couch, beware. He told us that the tumour was a neuroblastoma, a kind of cancer, and that he was putting in an urgent referral to the oncology service. We would see an oncologist later that day, and we could go be with Georgia in the recovery room. We were numb.

She was so brave, so strong. She stayed in the hospital for two nights after the surgery. She helped us push her IV pole when we went for walks in the hall. By 24 hours after her surgery, the doctors still wanted her on a liquid diet. She was not impressed. She gave us hell for eating food in front of her. Now, she won’t touch jello, apple juice, popsicles or chicken broth. The morning she was discharged, she fell in love with a little tykes car she could get right into and ride around. At one point, she sped off on me while I was trying to talk on the phone.

We got home Sunday afternoon. On Monday morning, I went to work. The hospital called at about 9 am, we had to be back there at 1:30, and be prepared to stay for 4 days for testing. My boss has been wonderful through all this, letting me leave a moment’s notice, with no idea when I’ll be back. He’s never raised an eyebrow, and his support is greatly appreciated.

We had 4 days in a row of tests, including 3 days with sedation and a general anesthetic for a bone marrow aspiration and biopsy. Georgia came through great—except the fasting. She gets suspicious now if breakfast isn’t served right away in the morning, and I don’t blame her. We met several nurses and a social worker. We were put into contact with support groups and charities to help with travel expenses. We weren’t able to get into the Ronald McDonald house because it was full, but a local hotel offers reduced rates to families at the hospital for their children.

We waited for the test results for several days. These were the longest days of my life. We spent them, as much as we could, hugging and loving our children, laughing with them. I don’t worry about spills any more. I don’t care if Georgia smears spaghetti sauce in her hair. Dirty children are great. Dust keeps.

We were called back to the hospital and told the best news possible. As far as they can tell, the surgery removed all of the tumour. We are incredibly fortunate that Georgia has that bum kidney, because otherwise, we still wouldn’t know this cancer was inside her. Given any other situation, and given the way her type of tumour behaves, we probably wouldn’t find out until it metastasized to her brain or her bones and caused terrible pain. At that point, they need intensive chemotherapy for several months and bone marrow transplants. We are so blessed.

Neuroblastoma is a terrible disease. It strikes children. It is the most common solid tumour in children after brain tumours. There is a 15% 5-year survival rate. Most of the time, it isn’t found until the child is sick because it has metastasized.

We are so lucky. Georgia doesn’t require any chemotherapy at this time. She needs several MRIs over the next year, with the next one being on February 10th. We are praying that Dr. Rubin got it all.

Scott and I have realized how special our little family, and the larger family of friends and relatives is. We are so thankful for your support, phone calls and notes and prayers. One of my clients and some of my co-workers have graciously included us in their prayer group wishes. The parents of one of Sydney’s classmates made us dinner one night, and dropped it off at our home. Our caregiver has taken the children several days without charging us, and she’s been incredibly lenient about her 2-weeks notice for time off. My mother and sister have cleaned my house, made us food and looked after Sydney when we had Georgia at the hospital. Scott has been a wonderful father and husband through all of this.

If you are spiritual, please take a moment to send healing and supportive thoughts to all of the families of the children undergoing chemotherapy and dialysis on the CHEO 6th floor day medical unit. Please also pray for the doctors and nurses to gain the skills and knowledge to cure more of these children, who have so much bravery and dignity in their fight against these terrible ailments.

We are also incredibly blessed to have such a wonderful sister for Georgia. Sydney, upon being told of Georgia’s diagnosis, immediately decided to raise funds to help kids with cancer. She started a collection at school, has made posters, and told her brownie troop about it. She’s also told her cousin Taylor, who is a powerhouse fundraiser as well. These are a couple of special little girls.

I’ve designed and made beaded bracelets for Georgia. If you would like to wear a bracelet in support of Georgia, please let me know and I’ll mail them out. We also plan to sell them to help Sydney’s fundraising efforts. If you’d like to help, just let me know.

These are the charities that Sydney is collecting funds for. She is collecting spare change, and will split it among the charities. Any help you can give would be such a kind gesture for this sweet girl, who is committing herself to the only thing within her power that can help her little sister.

This Charity, the James Fund, raises money for neuroblastoma research in Canada. It is run by parents who lost a wonderful little boy to this cancer, and there are articles about him and the charity in the February 2006 Reader’s Digest and the March 2006 Canadian Living.

The Candlelighters, or the Childhood Cancer Foundation is an international charity that helps children with cancer and their families.


Faye & Scott, Sydney & Georgia

No comments: