Brianna's Hugs - July 6

Yesterday was a very difficult day for us. To learn of Max’s passing and also deal with Brianna’s increased pain… I finally had enough at 9 PM. I went upstairs, had my breakdown, and went to bed. I said long ago that Max and Brianna share a special bond. It was mentioned in the WCIU news story and I have mentioned it in previous updates, but I want you all to know that it is much more than sharing a terrible disease. We did not tell Brianna about Max until after dinner, but she made a few statements during the day making us wonder how deep the connection goes. The most interesting was when Brianna’s teacher Jill was sitting with her so I could take the dog outside and when I came inside Jill told me someone called but they didn’t answer. Brianna, who was in and out of sleep sitting on the couch said, “Did it say Lacewell on the caller ID?” Jill and I looked at each other and I told Jill that Leanne and I only use our cell phones and there has never been a Lacewell call to our house phone. I told Brianna about Max after dinner and she was very upset, in disbelief because, “He was a good boy and didn’t do anything to anyone!” It is a difficult concept for adults to grasp much less a child, especially one fighting cancer themselves. Today she had a conversation with Max. I wasn’t able to hear exactly what was said, but she was talking to Max!!
Through all of her pain and confusion Brianna is still able to poke fun at her sister Kaitlyn. The other day at dinner she said that Kaitlyn was going to end up in juvie because she continues to streak through the White House. No idea where that came from, but it made us laugh. Kaitlyn is learning to take it with a grain of salt…just shakes her head and looks at us as if, “what the heck?” We told her to enjoy it because it’s the Brianna we know and not the cancer. Brianna’s favorite word is “Whatever” and she is still gives me ‘the look,’ anyone who has a teenager knows ‘the look.’ They don’t have to say anything but you know what they are thinking! “What are you stupid?” or “You’ve got to be kidding me!” It’s nice to know I still annoy her. She has mastered the eye roll as most teenagers do, but she adds the “whatever” at the end. Normally, the “whatever” would bring a lecture or some other discipline action…but I am just glad to see glimpses of Brianna without cancer. Brianna wanted to say something yesterday, but realized I was distracted by some guests so she said to those near her, “Whatever, I will just wait for mom to listen because I am not going to repeat myself!” (Eye roll…sigh!)
Today we witnessed two small miracles!! Brianna called for Kaitlyn, not once… but twice, to come over so she could hug her and tell her how much she loves her….over and over! She wanted to wear her t-shirt from Mary Poppins so she could match Kaitlyn and asked Kaitlyn to climb in bed with her. I’m sooo very thankful for this as it did my heart good and definitely showed Kaitlyn how much she loves her! This made today a GREAT day!
Even though Brianna is struggling with vision, balance and is more confused, she is still anxious to put her arms out for hugs from everyone. Sometimes she will even call for us just to give us a hug!! Brianna loves Nurse Jane (hospice nurse) who is able to get many smiles and even a few giggles, which is very rare. Brianna is always the first to give people hugs…you never have to ask her for a hug.
The past couple of weeks have been heartbreaking for those living in and following the DIPG community. I am not following many children, but through the few I do follow I have learned there were at least 7 children in the past 10 days that have passed from this horrible cancer. How long will it be before we can even find a treatment that might work? I am including links to two organizations, started by parents who have lost a child to DIPG and who are making a commitment to research and finding a cure. I also am very thankful to the Lacewell Family who will use monies from the Max Lacewell Benefit Fund to create an endowment for Children's Hospital in Chicago, which will be spent for research on brainstem gliomas. God Bless Max and his family!
http://www.caringbridge.org/visit/maxlacewell
www.thecurestartsnow.orgwww.justonemoreday.org