4th Anniversary

It’s hard to believe that today marks the 4^th anniversary of Christi’s diagnosis of stage 4 neuroblastoma. 1,460 days and nights filled with constant fear, worry, and hope. Additionally, 1,460 days spent trying to “seize the day”, “live life to the fullest”, and “make a difference” all the while coming to a new understanding that “God’s people are good.” Thank you for holding our hands during the past 1,460 days and for loving Christi like one of your own! Your reward in Heaven will be great!

Days ago Shayne asked for a priest and he was told that we couldn’t get a priest to come to the hospital but they could send a lay minister to give us Holy Communion. That was fine, but not what we felt was needed for Christi according to our Catholic faith and customs. Yesterday, when Sylvia drove Holy Communion 1 ½ hours down to us – not realizing we received it earlier, Shayne told her what had happened. Without hours Sylvia had a priest come and give that special blessing over Christi. (And even though we were very nervous how it may be presented and what may be heard by her, Father Steve was FABULOUS! So gentle, loving and kind talking about taking Jesus’ hand and following Jesus, etc. Nothing scary or inappropriate at all.)

Yesterday she needed her morphine increased due to breakthrough pain. That happened again this morning. After that she had a wonderful day – her best in over a week!! She was awake (and sometimes witty and happy) for five straight hours!! She ate cereal, watched PBS cartoons, talked with us, got up and used the real bathroom, and let us read to her. Her radiation treatment (the high dose “boost” directly to the tumor in her skull protruding down to her brain) was scheduled for 11 AM so those amazing nurses and nurses’ aids wheeled her down in her stretcher to the basement of the Hospital of the University of Pennsylvania, next door from CHOP. We were told there would be a 30 minute delay. Normally not a problem, however Christi was now feeling pretty well and we had no entertainment! Thankfully, Shayne had our Barnes & Noble membership card and a B & N gift card Christi received so he took off running (literally, you know Shayne and what he does for his daughters) to the bookstore where he bought the next Judy Moody book Christi was anxious to read. I’m so glad he did because the 30 minute delay turned out to be a 2 ½ hour delay and that new book is now history. (We’ll read it to Shayla upon our return home. That series is so funny the girls have been loving the books!) Other than having her face bolted down to a board for over 20 minutes today, radiation wasn’t so bad. Today they finished her final leg treatment and she has two days left of the “boost” to her skull tumor.

Upon our return we were greeted by Dr. Maris. He felt that her increased LDH (now an unbelievable 13,641) has maybe stabilized and because it wasn’t any worse he felt we should continue with the radiation and possibly give her more dox (low dose IV chemo) on Wednesday. The LDH will be repeated on Wednesday to make that decision. He didn’t feel a CT scan so early after radiation would tell us anything so it wasn’t conducted. Of course he again stated that short of a real miracle, there is no medical miracle out there and the inevitable will come. He was very pleased to see that she’s made improvements over the past two days and that she’s pain free now most of the time. He said that how she does over the next couple of days is going to be instrumental in what comes next.

About thirty minutes after he left, Christi broke into hysterical screams of pain. It had NEVER been THAT bad thus far. “My head, my head, my head!!!” Her morphine was quickly increased, as was her push level. Additionally, a rescue dose was given and after an hour of horrendous pain she calmed down and is now still sleeping from it. We’re hoping and praying it was just from the intense blast of radiation that was given directly to that one spot today, but who knows.

Despite it all, she remains so pleasant. Even when something is done to bother her (her port cords get stepped on while we’re moving her, someone bumps her sore leg, etc.) she’s oh so pleasant. “I know you didn’t mean to hurt me, but please try to be more careful next time.” “I know you are trying to understand me, but please…..” At one point tonight, during the huge headache, she said, “I’m sorry but I’m getting a little bit ticked off here!” Then she apologized profusely as Shayne and I looked at each other and tried so hard not to laugh. (“Ticked off” is considered a bad word in our home so she really went out on a limb there and it proved to us how bad she was hurting!)

Shayla Update: We understand Shayla is back with Nee Nee and had her first night back to gymnastics. Tomorrow she will be back in school. My mother said:

Shayla loved her flight! She got off chatting happily with several young ladies. One said, "She is really precious." She said she got to pick her seat and she was in first class. I asked, “Was the seat really big?” She said "OH-YES" Sounds like she had 3 snacks and something to drink. She said the lady sitting beside her was real nice, but she didn't talk much. (Suppose she even had a chance?) She chatted very happily all the way home, but could hardly wait to get home and get out to that bunny cage. Good thing Joan wasn't standing in her way. Thanks for asking us to pick her up; I know that had to be really hard. Love, Mom

Well, I’m not about to burst Shayla’s bubble, but she flew Southwest and there is NO FIRST CLASS with Southwest Airlines and to her little bum bum any airplane seat would be big, but that was nice they let her sit in the first row – exactly where she told me she wanted to be. And she’ll never know, but Christi was saying the funniest things today when I asked her how she thought Shayla was doing on that airplane all alone. Christi said, “You know Shayla, she’ll tell the flight attendant, ‘Mom said I should order water, but I’d really like a Pepsi. This snack is really good. May I have seconds?’ ‘Do you think she took toilet paper from the bathroom and vandalized the airplane running up and down the aisles tossing it?’ What a hoot Christi was today dreaming up schemes Shayla may have tried to employ.

FUNNY CHRISTI MOMENT: A few days ago I was sitting beside a sound asleep Christi when the team of doctors came in for rounds. (Now because of the VRE virus up here, which has us all in isolation, playroom closed entire month of Sept., etc. all six of them were wearing yellow disposable gowns- pretty intimidating.) They woke her up and said, “How do you feel?” Without missing a beat she said, “Well, it looks like I have a captive audience so I’ll take a minute to think about your question.”