Topsy Turvy!

Anne wrote the blog tonight--- my thoughts are going 1000 different ways---

Amy

Dear Go Grier Go Team:

As many of you know, I had the absolute privilege and honor of accompanying my dear friend Amy and wonderful Grier to New York City, for Grier’s most recent battery of scans and tests at Memorial Sloan Kettering Cancer Center. I had no idea what to expect. We have all read the Go Grier Go Blog regarding these “routine” check-ups—quick walks to MSKCC, lunches at Lenny’s, walks to Time Square, cupcakes at Crumbs Bake Shop, trips to Toys-R-Us, and evenings at The Ronald. Well folks, there is absolutely nothing routine or easy about these incredibly difficult trips to NYC. Truth be told, this was a physically and emotionally exhausting week for us all. In reality, this was a chaotic week filled with miles and miles of back and forth between MSKCC and The Ronald McDonald House, sleepless nights, the constant waiting, as well as the phenomenal displays of unconditional love, fear, optimism, grace, frustration, humor, determination, wishful thinking, risk, laughter, pain, friendship, tears, both stamina and fatigue, devotion, questioning, heartache, and hope. I found myself in complete awe. There were contrasts, thyroid protection drops, urine collections, physicals, scans, nuclear medicine, IV injections, MIBG, bone aspirations, fevers, joint pain, and vaccine injections—not experiences for the faint of heart. It just plain sucked! You’re right, not eloquent words in the least, but I speak the truth.

Towards the end of the week, we felt no news was good news, but before we got on the plane we thought we would check in with Dr. Kushner—inquiring particularly about the CT Scan and the MIBG results. Within moments of our e-mail being sent, Dr. Kushner responded, “MIBG is negative. CT shows very slight enlargement of something (likely scar tissue). Probably nothing, given the negative MIBG scan. But want to be 100% sure, so need to repeat CT in 4-5 weeks, that can be done at home.” Not what we wanted to hear. Our hearts sank. I watched quietly as Amy’s mind went a hundred different directions—processing all the blogs, updates, and outcomes of so many other families also living through this hell. Eventually we gathered our thoughts and developed some questions for Dr. Kushner—Where is the slight enlargement? Do we have to wait 4-5 weeks? Could this change be from a cough he had weeks ago? We waited with bated breath and with tears in our eyes. He replied, “chest. No. Yes.” Again, we wait. And again, it sucks! And yet again, we go on living as if life is normal…all the while knowing, life hasn’t really been the same since 2007 for Jeff, Amy, Hayes, Grace, Grier, Maggie, Mimi, and G-Dad.

This leads us up to today, the day after Grier’s re-scan—only two weeks after the initial sketchy results. So, as a devoted friend, I wanted to take a moment and update everyone on what we have learned today about our chatty, attentive, upbeat, athletic, charismatic, generous, and willful Grier. Yesterday’s CT Scan definitely showed “something.” This “something” is unwelcome, it has grown, and we need to figure out exactly what it is. Currently, we don’t have a precise timeline for the days and events ahead, nor do we know what course of treatment the doctors will decide on. What we do know is that Grier will have an MRI tomorrow at 1:00pm and that he will be flying to MSKCC in the days ahead for a biopsy/surgery by Dr. LaQuaglia. Dr. LaQuaglia is considered one of the best pediatric surgeons in the world. He is the same surgeon who operated on Grier for 11 hours straight to resect his tumor on October 29, 2007. We are not speculating at this time about what the biopsy results will show. Obviously, this news has come as a complete, devastating, and disappointing blow—especially considering how great Grier looks and feels, as anyone who has seen him about town can confirm.

Amy and Jeff have many things on their plate. Most importantly they feel they must stay strong and focused for Grier, Hayes, and Grace. They respectfully ask that you keep this information to yourself—being sure not to discuss either the knowns or the unknowns with your children, as they have not had the opportunity to process all the new information as a family. We must be sure to give them all the time and space they need, and that they ask for.

If the tone of my message seems a little callous, it isn’t meant to be. It is only meant to give Amy, Jeff, Hayes, Grace, and Grier the greatest amount of practical and helpful support at a most stressful, tense, and chaotic time.

So, here it goes:

1. Please don’t ask questions about Grier when Grier, Hayes or Grace are around. In fact, please don’t ask a lot of questions in general right now about the details or the disease or the possible outcomes. They don’t have the answers and answering them is exhausting.
2. Please don’t call or stop by right now. We ask that you check the blog for any updates.
3. Please don’t ask Grier how he feels or Hayes and Grace how their brother feels. Grier feels and looks great. As a wise woman said, “When people ask him how he feels, it confuses him because he doesn’t understand why people are acting like there’s something wrong with him.”
4. Please don’t ask questions that make them recount the whole ordeal, the facts and statistics, or ask them to speculate about their future.
5. Please don’t be afraid to acknowledge their pain, if appropriate. It’s OK to say, “This sucks.” Oh, does this ever suck! Please don’t ever say “God doesn’t give you more than you can handle,” or “things happen for a reason,” or “you are so strong.” Frankly, these kinds of greeting card clichés should be illegal.
6. Pray if you pray, believe, hope, send love and good thoughts and only wonderful intentions during this time. We will take all of the powers of the universe right now. And please know that the Christenbury family thanks you all for your friendship and support.

With many thanks,

Anne Sawyer Barnette