Yesterday turned out to be an eventful day. I got a phone call from my Dad, who had gone back home for a while. He told us his wife’s granddaughter, Kaylee, had been severely burned in a campfire accident. Apparently, one of the kids at the bonfire had thrown a large log onto the fire, which in turn threw a large burning log onto Kaylee. Somehow, she had the presence of mind to jump into the lake, and the kids put wet towels on her. She was burned on her thigh, side and chin and sent to the hospital. It looks like she will make a full recovery, minus some scarring. We are keeping her in our prayers.
Then late to clinic for Lulu’s spinal tap and chemo, we were bumped back. This meant we’d have to wait even longer before she could eat. After a minimally dramatic port access, we waited for her blood work to come back. An announcement came over the loudspeaker calling out a CODE BLUE on the H.O.T. unit. Oh no. I thought I recognized the room number. Maybe it’s familiar because we were right next to Bo’s room last time? That’s it, right? I asked the nurses and doctors, realizing full well they couldn’t disclose information about another patient, and I was putting them in an awkward position. I continued to ask anyway, hoping to see some glimmer of confirmation or denial in their eyes. Let me tell you these guys would all make for great poker players; not a twitch or a tell to be found. I texted his mom, but no response. Must wait.
Lulu’s ANC was only 250, so there’s no way we were starting treatment that day, and probably shouldn’t have set up a play date and dance class for the week! I practically threw a bagel at Lu, who started devouring it. Sometimes it still seems strange to see her eat! After exam, learning the new protocol to come, and getting prescriptions called in, we are told we can go, and come back Monday for treatment.
I knew I was on the visitor list for Bo, so I casually asked at the security desk which room he was in. My fears were confirmed. Shit. He’s been moved to ICU. We later get a text from his mom that he’s had a seizure and they are doing a cat scan. They’ve found something in his brain, but have to do an MRI to find out what. I can imagine the terror his mom and he is feeling. I was praying he might be sleeping during all of it. They have to wait to find out the results, and are hoping it’s not leukemia in his brain. Oh, that waiting for MRI results … brings me back to when Lu was so sick when her appendix burst, but we didn’t know yet. Waiting is absolute agony. I got another text at almost 10:30 pm from Bo’s mom sharing the news that it’s a complication from his medications that cause extremely high blood pressure. It may be reversible, and they are treating it. We were relieved, but still concerned, and continue to send them as much strength as possible.
Most of you don’t know Bo personally. But I share his story because I feel like he’s everyone’s child. He has the kind of beautiful spirit that makes you feel like you know him, he reminds you of your own precious child, or the one you hope you have. He’s kind, sweet, strong and loving. These kids really are all of our children. I used to think this stuff happened to other people. How naïve, and how superior! It really can be any of us, at any time. We’re all in this together. If this sounds a bit maudlin or preachy … I can’t help but be moved to by this year and the events that continue to unfold.
Lulu was shaken up as well, and I wish I could protect her from this madness … and that I would have been better able to hide my own emotions. We are careful about what we say, but these situations have become a part of our everyday lives. She said she was praying for Bo, and worried about him. She wants him to be able to go home soon.
We are still trying to put emotion into action and had another successful lemon-aid stand, this time at our church. We raised $600 in 2 hours for children’s cancer research. Thank you for those of you who donated online as well, that helped a lot! Jazz Pharmaceuticals donated $1000 to the MACC clinic at Children’s on our behalf, for Lulu’s photo shoot. Many of you are raising money in races, biking, walking, running, swimming, and we are so touched by your efforts, and proud that you wear LULU on your shirts as you race.
Thank you, also, to the wonderful doctors and nurses at Children’s. I neglected to mention Lulu had a party at clinic on her last day of delayed intensification. It was her official last day of shots, and Bonnie, along with the other nurses, made a huge sign for her with balloons, candy and presents to celebrate. THANK YOU. I’m continually impressed with the care and thought you all put into your jobs. You are still by our side for every scream, every tantrum, every hug and every giggle. I don’t know how you can deal with the love and the loss your jobs entail, but I am grateful to have you. And humbled by the strength you have to keep on loving, despite the risks to your own hearts.
Thank you all for reading, acting and sharing your hearts with not only Lulu, but with all of the Kate’s, the Joshua’s and the Bo’s of the world . . .
Love,
a.l.l. of us
