First off, no we haven't heard yet. Tuesday is the day the Brenners oncology team conferences on all cases, but they are waiting on the COG do make their decision. So we wait and pray.
We have been trying to have as normal a week as we can, but I'm finding it to be more difficult than I thought. Julia is still recovering from her abdominal surgery, so she's not totally back to her normal self. Though it amazes me what this kid can do. She has had maybe 5 doses of pain medicine since we got home and just trucks along like nothing happened. She amazes me. She is still very attached to me and finds security in that. I started reading the huge cancer binder they leave in your room when your child is in surgery and they discover cancer.
(This is one of those surreal things I will never forget- walking back in the room from the PICU and seeing it laying there on the couch. I had been told they had them and it would be there, but a part of me prayed we would never get one. I didn't even open it for the first time until last night. It is very helpful and a tremendous resource, but I wish it wasn't now a fixture in my daughter's bedroom.)
According to the 'Hope Binder' (that's what they call it) this is totally appropriate for her age group. It says the mother should expect to be a primary security to the child and to limit time away and to prepare the child in advance for any absences. She did great while we were gone last night and is still asking today for her little friend Jack to come play, but when we got home she was still laying awake in her bed. After an hour she started to cry and told me she was just sad. It breaks my heart to not know what she's thinking. We can't really probe too much without being suggestive, so we usually don't know. The ChildLife specialists and psychologists are very specific about how to talk to them and not to suggest feelings or reasons for feelings. Julia ended up coming back down with us to be cuddled and was up till almost midnight. (Billy and I were actually asleep by 10:30ish.) Today she was much more clingy again and crying to be held. It was definitely worth the date night though to give us our first chance to just be...the two of us.
Our days are more whiny then they used to be. It's a mix of so many things. Julia whines when she gets tired or uncomfortable, but also because she's an almost 3yr old who just whines sometimes. We are working on still keeping limits and consequences in place. This is so hard in my heart even if I believe it in my head. Carter whines for the life we used to have. He's used to seeing friends every day and going places. We have had to severely limit that to keep everyone healthy. He knows why, but he still doesn't like it. I also struggle with letting them just be normal siblings. Carter is your typical older brother who doesn't always have time for his sister or want her bothering him, but I take it so personally now. Especially when she is sickeningly sweet to him as most younger siblings are. I'm trying not to get sucked into the negativity of it and to take the high road. Its so much easier said than done when you're a stay-at-home mom of preschoolers. I was talking to my friend Lara on the phone commiserating, as she's been stuck home with the stomach flu in her two toddlers. I said, I try to make a conscious decision to be happy and positive in spite of it, but then I just sound like an idiot because they are still whining. Have you ever stopped to listen to yourself in these moments? You sound like a nut! Its almost comical. Carter said the other day at lunch- we should change the name of the kitchen to the 'whining dining room'- funny Carter.
Each day we've tried to do at least one normal thing. The other day was going to CVS. Today was getting Julia's 3 year pictures taken early. We wanted to do it before chemo when she probably won't be feeling up to it. I prepared myself hoping to not get weepy, but sadly it didn't turn out that way. I was doing fine- the kids were happy. I was listening to two moms debate who's child had a worse case of reflux and needed more doctors. I bit my tongue and looked the other way. Time went on and we were still waiting. We had an 11:50 appt and it was now 12:40. Our 'happy time' was fading and lunch and naptime were looming. I had my heart set on getting these done before treatment and we are expecting the call anytime now. This was our only chance. I didn't want to do it (bring up the cancer), but I did. There were three workers all sitting with customers and it was going to be awhile. I interrupted one of them and asked if he had any idea how long it would be. He acted annoyed and the tears started. I told him she was just diagnosed with cancer, was starting chemo any day, and this was our only chance to do this. I didn't want to say it, but I felt such an urgency. A really nice lady from the processing studio came out and did the couple shots we wanted and was so nice and understanding. Note to other moms in this situation, don't go to the portrait studio by yourself. On a good note, the pictures went well and I can't wait to see them.
We are excited to have Ally and Emmy with us for a few days during their spring break. It has been a welcome distraction and lots of energy for Carter especially. He took his own cheering section to soccer practice tonight. They are all camped out on a blanket in the living room right now playing Julia's favorite games.
Thank you all for your continued prayers, comments, emails, phone calls, meals, errands, and care packages. It is a shining light in our life right now that we all appreciate so much. It's so sweet to hear the kids say, "wow! look what they did for us!" We thank you from the bottom of our hearts, all we can say is 'wow'.
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