NOON - 2PM: Chuck E. Cheese...for one of Sophia's classmates, Abby. She turned 5.
2:30 - 4:30: Matthew's house....he's in Sophia's class. He tuned 6. It was a reptile petting zoo party. Will took Sophia while I attended the church party with Lilly.
4:30 - 6:30 TOMORROW: Pirate party at Colin's house. He's in Lilly's class. Turning 4. His mom sent home a note to make a donation to a local charity in lieu of a gift. The girls and I went to the Virginia Beach SPCA last week one day after school and made a donation in Colin's name. We fell in love with a Husky puppy while we were there too.
Anyway, back to last weekend's birthday parties.
Abby's mom found out that Lilly would be coming with us to Chuck E. Cheese for the party so she was included in the fun. That was really nice of them. Elizabeth and Sophia ran around together and Lilly, Will and I tagged behind.
Dear Beach Day AM Kindergarten parents,
Our daughter Abby is in your child's kindergarten class. She also has cancer. Abby was diagnosed with Leukemia, specifically B-cell ALL Ph+. She's currently undergoing chemotherapy and has doctors all over the country tracking her medical care due to the rare and especially serious nature of her particular disease. Chemo and other complications with her treatment will keep her out of class fairly often; however, when she feels well enough, she would like to attend school. We want the same thing. Abby is very excited to be at Beach Manor with her friends when she can.
Abby will share a book with her classmates that she wrote about cancer with the help of her Child Life Counselor at the hospital. Below is the text of the book. It is very basic and we hope it answers some questions that your children will have. We understand that children are naturally curious. When a friend of theirs looks different and misses school frequently, they want to know why. The book's text is:
"Hi. I'm Abby. I like the colors purple, pink and green. I also really like princesses. I am a kid just like you. Cancer is small bad cells inside of me. It only makes me sick. You can't catch my cancer. When you get sick, sometimes you have to take medicine to make you feel better. Chemo is medicine that fights cancer. I need chemo to get better. I will be taking it for a long time. Chemo fights the bad cancer cells but also makes my hair fall out. Don't worry, you're not taking chemo so your hair isn't going to fall out. Chemo can also make me tired and sometimes I get sick easily. Even though I have no hair, I can still play and have fun. My port is how I get my chemo medicine. Some days I will be at the hospital for treatment so I won't be at school. I'll be back as soon as I'm well enough. One day I will be cancer free! Then I won't have to take chemo anymore and my hair will grow back."
Abby will be at school when she is feeling well and her immune system can tolerate it. Please take the same precautions for her as you would for others in the class: when your child is sick, please keep them home from school. And just like all kindergarten classrooms hand washing will be encouraged.
** The one request we have is in regards to Chicken Pox. If you believe your child either has or has been exposed to (e.g. sibling) the virus, please notify us or the school immediately. We can then discuss it with Abby's Oncologists for a risk assessment. Chicken Pox exposure for Abby is extremely serious. **
We thank you for your time and consideration. Please feel free to call or email us with any questions at any time. We are extremely open and comfortable with the topic. It is a huge part of our life now, so there is no need to walk on eggshells. Please don't hesitate to reach out with any concerns or questions. We look forward to a great year at Beach Manor with you and yours!
Sincerely,
.....
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FAQ:
What is Abby's prognosis?
Unknown. Her leukemia is an extremely rare variety. Until very recently, it was highly fatal. Abby did go to Chicago for a Stem Cell Transplant, but while there Abby was put on an experimental drug that appears to be working very well for her. As such, the Oncologists and Transplant Specialists recommended waiting a bit for the bone marrow transplant. The long term efficacy of Abby's experimental medicine is unknown as it has only been used for her type of cancer for about 2 years now, and not all children get this drug.
Where can I learn more about Abby's disease?
Ask us. We're open and will gladly tell you what we know. If you are he googling type, try: Pre B-cell ALL Ph+". The long version of that is: Precursor B-cell Acute Lymphoblastic Leukemia, Philadelphia Chromosome Positive. Our only caution is not to believe everything you read there. Believe us, we're read all of it. Some sites will tell you Abby has no chance, some will tell you Abby is as good as cured. As always, the truth lies somewhere in the middle. Wikipedia for "Acute Lymphoblastic Leukemia" isn't bad for an opener and toward the bottom, there is a link to "Philadelphia Chromosome" that may be slightly more medically-oriented than you'd like, but is fairly straightforward. "CureSearch.org" is also a very good site.
How did Abby "catch" leukemia?
No one knows how or why some people, especially children, develop cancer. Genetics probably play a role. As a side note, we donated Abby's cord blood to an Oncologist in Europe specifically studying how and why leukemia "turns on" in some kids.
Is it contagious at all?
Nope. Not even a little bit. It would be like catching someone's blue eyes or their blood type. Can't be done.
Is there anything Abby cannot do?
Abby had a port installed, which is a small receptacle under her skin that has a tube running straight to her heart. As such, rugby is not recommended. In all seriousness, she cannot do contact sports. Her energy levels will probably determine what she can and cannot do more than anything else.
Why doesn't Abby have hair? / Will Abby's hair grow back?
Your kids may ask about this - it is our most common child question. Abby's chemo targets, among other things, rapidly dividing cells (like cancer cells). Her follicles, some skin cells and pigmentation fall under this category, too. So it is a normal side effect. When chemo slows down, she may get some hair back. When chemo is complete, she should get it all back.
How long will Abby be on chemo?
God willing, for a total of about 3 years. We say it that way, because the protocol calls for 3 full years of chemo, and we will stay with this experimental protocol as long as it works. Abby is currently in clinical remission. She still has cancer. It is however being managed.
Are you on Caring Bridge?
Yes! Caring Bridge is a medical blog. Go to caringbridge.org and search for Abby Furco if you'd like.
Yep, it's rocked my world as a parent! I can still cry at the drop of a hat when I think about Abby. Sophia and I had a long talk about her and Sophia really didn't ask any questions at all. I just reinforced that she is sick on the inside, but she's taking medicine, etc...
When Sophia found out that Lilly would be coming to the b'day party, she made a comment that Lilly might be scared of Abby (because of her lack of hair, I guess. I waited to see what Sophia would say, but she didn't follow it up with anything).
Abby's not a school a lot. I ask every day... She wasn't there at all this past week because, ironically, Elizabeth's little brother has the chicken pox!
Anyway, the girls had a really good time at the birthday party and I have a feeling that Abby and Sophia are gong to be great friends. That makes me smile.
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