One thing that Abigail's cancer has changed is how I use my time. I felt busy before but now it is just crazy. I feel like I can't keep up with friends, enjoy hobbies, or just relax. There is always something that has to be done. When I am sitting it is because she is sick or having a bad day. I have recently decided to take my life back. I need to do things I enjoy just for me and that includes writing about our experiences.
I never thought it would happen, but cancer has become the new norm. Abigail still cries when they stick the needle in her chest to access her port but that is about it. She walks into the oncology lab like she's a rock star with a grin and a wave for everyone. They always have a craft or coloring waiting and she knows which locked cupboards contain the toys she likes. She starts looking for her best friend-the child life specialist-as soon as she arrives. Once they hook her up she will play with the kitchen for a while but then she wants to be busy. If we are there long we order up food. She sits at the little table, eats her Ramen/yogurt/chips and thinks it's funny that she makes messes. She loves to roam the clinic to see and talk to everyone. The great thing about a children's hospital is that they are happy to let her. I'm just the dorky mom that follows her around with the IV pole. We have met some brave and amazing people. I have so much respect for those kids.
As to Abigail's ability to tolerate things, she is amazing. It took 2 months for her to walk again and then she was ready to go. Right now she is on an escalating chemo course. Every 10 days if her "blood numbers" are high enough she gets more than she did before. Last Fri. she got 2 different forms of IV chemo and then had another form of chemo placed into her spine surgically. Sat. she didn't get out of bed until 10, but she was still walking. Her gait is unsteady and sometimes her legs give out on her but she refuses to lose her independence. Sometimes she will walk along, collapse or throw up, and get up and go again. She is so young that I wonder if she even remembers what it was like to feel good. She has her steroid moments but she is generally happy, full of smiles and waves, and busy. I was a bigger wimp by far when I was pregnant with the twins than she is now. She has been and is such an inspiration to me. Her perseverance with a smile keeps me going when I get frustrated with the situation.
Natasha gets away with murder. So far she has only been tested twice for Leukemia and both were negative but I am so paranoid at times. I am always on the alert for signs of the cancer in her. One thing that this experience has done is change the way I have been spending my time. I am rarely on the computer anymore and I haven't watched TV for weeks. Today I spent my afternoon playing board games with my 4 oldest. My baby has been held more. I sing more with the little ones and we have read more books together. Today I played pet shops with the twins. We have gone on more walks and I have been more patient at pushing the new little trike they got for their birthdays (Just turned 3!) I have been softer and found more patience than I ever knew I had. All thanks to a little girl with cancer.
I truly like the changes. It's like taking the waxed paper off of my eyes and seeing joy in things that were chores before. I love watching them do simple things together like sit on either side of the sink and "brush their teeth" (they really just suck the water out of the toothbrush and then refill it). I like people better too and tend to be less judgemental of others. I know that I have been a terrible wife/mom/friend lately because this has consumed me and I wonder now how many unknown things others are dealing with. It's been such a personal journey for me. Don't get me wrong, it's really hard. I have anxiety the whole way to the hospital every time we go and usually cry-out of pain or joy when we leave. But we are very blessed that she is doing so well. We all are. Work is exhausting but rewarding. Kids are moody but happy. Money is tight but not absent. Time is our most precious asset.