Friday, January 27, 2012

What Not to Say: Holier than Thou Caution Point

WHAT NOT TO SAY: Holier than Thou Proceed With Caution Point

e. Not on the DON’T say list, but on the “say carefully” list : “Well, we will pray for a miracle! God can do a miracle!”

Miracles are AWESOME!

We have just come to realize that miracles are rare, and that God still loves us even if we don’t get one.

Miracles are tricky. Everyone hopes for the miracle for their child. We do. We see the statistics, we do the research, we hope, we pray, we dance by the light of the full moon, we do whatever it takes for a miracle. And we have SEEN miracles in our friends, and we rejoice in each one. But sometimes miracles are not The Way We Would Like them to Be. And sometimes, saying over and over that “we’re praying for a miracle”…well, it’s demoralizing to the parents who have come to the realization that this doesn’t seem to be the way things are going to work out. When it becomes obvious that this isn’t going to happen, saying it just makes things worse. Pray for us, pray for our treatments, pray that things get better, even PRAY for a miracle, but just be careful how you announce that intention.

I don’t want to miss the moment God has given us by wishing so super hard for a moment that maybe isn’t meant to be.

I know there are folks who will disagree with me on this, but here’s how I see it:

My child has pretty massive, diffuse, multi-focal brain tumors. Those tumors have NEVER gotten any smaller. Through 3 chemos in Chemo 1, and now onto Chemo Redux (aka 5 years later/protocol 4), no tumors have ever shrunk. On any given day I know we have several hundred people praying for us (which is very humbling). G has received our faith’s “Anointing of the Sick” at least once, if not more (funny side note, she just now, as I was typing, asked me about that. Weird.) Are the prayers NOT working?

Well, my kid goes to school every day. She takes a Modern Dance class. She loves American Idol and cookbooks and Scrabble and anything animal print. To look at her you would NEVER know that she has massive brain tumors. Her life EVERY DAY is a miracle, I’d say.

We’ve had some other miracles, too. Just not the big “tumor be gone” miracle that we hoped for. And you know, it took a lot of years, but I have accepted that. I may not be all woohoo about it, but I have accepted it. We’re in a marathon, and as long as we get to keep running, we’re good. That acceptance was something of a miracle for me.

It’s that moment when finally we realized that a stable scan was good. Better than good. Miraculous. It only takes one scan with significant tumor growth to remind you of the joys of stable.

Kind of like a song from Fiddler on the Roof…, “Wonder of wonder/ miracle of miracles! God took a Daniel once again! Stood by his side and miracle of miracles: Brought him through the lions’ den!”

The lions didn’t go away, or poof into the night. But they kept their hungry mouths shut. Miracle!

Our miracles include

1) me realizing that G was not being cosmically punished by God because I was so horrible. This one took over a year to get to, and when it finally happened, it was pretty miraculous. That is also why I get psycho about ANYTHING that makes parents think their child’s tumor is the parent’s fault. The agony of that is indescribable. I still have flashbacks (walking into the atrium of the main hospital on the most recent scan day and hearing the Gong/ding/pop of the fun interactive sculpture thing they had gave me a moment of “breathe!”…the PICU used to overlook the atrium, and our first night at the hospital, waiting for brain surgery, that sound, that happy gong/ding/pop kept going all night long while I sobbed and asked God why had he punished my child and not me…but again, I digress). Getting past that moment was a miracle. Strangely enough, I got to that moment after bringing G to a special Healing Mass thing. Hm. And then G's condition imploded...see point 2. ?But I understood, miraculously, that our dire circumstances were NOT a cosmic smite.

2) Having G confound the doctors in 2006 when it looked like things in our universe of yikes had just taken a frantic downward spiral in which the future was measured in months not years.

3) Giving back the Braille writer because my kid was cheating by looking at the dots to figure out the letters. Yeah. My kid was using her eyes to CHEAT AT BRAILLE. That was a miracle.

4) Watching G “dance” in the Nutcracker 3DAYS after shunt revision in December, her 3 inch incision covered by her curls (our neurosurgeon is a magician!) . Miracle miracle miracle.

5) Starting a phase II clinical trial of a drug that wasn’t invented when G did chemo before. Miracle.

So we’ve had some miracles, things that were life changing and unexpected and huge. But we’ve had to CHANGE our definition of what a miracle is. And, more importantly, we’ve had to help G change HER definition. As she is older now, she gets the YIKES in a way she did not in first grade. She fears scans. She worries about missing school. When she knew she had to start chemo again, she whispered, through tears, “will I lose my hair?” I can’t carry the scary for her anymore.

Occasionally someone will say something to G about a special prayer or moment that Is So Amazing, , If we only go here, or do this or do that, she will get better. Or someone will tell her if she gets whatever relic/picture/sparkle Mary/religious object THAT can heal her.

This, to me, verges on What Not To Say, because while G understands the yikes now, she does not necessarily understand the nuances of religious objects and how they can help us focus on GOD, not on some perceived power the OBJECT has. God has power. Tchotchke, not so much.

Except the Perler Beads that seem to be taking over EVERY INCH of my kitchen, thanks to my industrious 9 year old who has an almost religious zeal in spreading those plastic beads EVERYWHERE. hm.

Some of this approach is just part of one version of our faith tradition, and I know it is generally said in love and hope. I love religious shrines, I find them peaceful, hopeful places. Some people do find miracles there. We have not. I know God can heal Genna here at home, or at CHOP, or in the middle of the deep blue sea. But even if He doesn’t, He does not love her less. .

So promises of healing or imminent miracles “if only you believe enough” go on the Don’t Say it List. We don’t need to test God’s love. We are sure of it. My kid believes God loves her. She LOVES to have people pray with her. For all my aversion to being The Center of a Holy Moment, G LOVES it. She really does. So I won’t get in the way of that. And she LOVES religious tchotchke. Who am I kidding, I find a glitter Jesus to be a kind of religious pop art that appeals to me in a purely humorous way. And I think God has a sense of humor (have you SEEN my childrens’ hair?). So that’s cool.

But please don’t promise my kid things only God can deliver, or imply if we just do the Right Holy Thing, voila…miracle!


Now, back to your regularly scheduled programming…next up, Normalcy is Not a 4 Letter Word.

Tuesday, January 24, 2012

What Not To Say: I Thank God Almighty That I'm Holier Than Thou

The Post I have Hesitated to Post…

Previously, on What Not to Say…

So I had a block of time last Thursday to just sit and think, in between snippets of Adele and the jackhammer like sounds of a Siemens Magnetom, and I realized that there might be a niche market for a new show called “What Not To Say!” A couple of my fabulous sisters will swoop in on unsuspecting people who say ABSOLUTELY THE WRONG THINGS when dealing with catastrophe. They would burst in unannounced, surprising the miscreant mis-speaker, and take them on a whirlwind training of WHAT NOT TO SAY. At the end, the reformed guest will be better prepared for the next challenging conversation with someone who is being smote.

This episode is a tough one. I should say up front, I am devout within my faith tradition (Roman Catholic). So I speak from love, really.

WHAT NOT TO SAY #3: “I thank God Almighty That I’m Holier Than Thou!

This episode is tricky. Certainly the “God doesn’t give you more than you can handle” can fit under this heading. We have relied on our faith to get us through catastrophe, and obviously this particular point will be different for people with varying ideas about God and the cosmos.
But perkily saying things like,

a. “I have a special needs child (not life threatening), and I just told God, I know you may want him back someday, and I am ok with that, if you want him back he is YOUR child, I am only given him to take care of for a little while!”

…well, I think I actually said, “I am not ok with that. I want to keep my child, thank you.” I almost snapped and said “Oh no you didn’t!”, but I refrained. Barely.

Look, dealing with catastrophe is so personal. If you deal with a challenging but not catastrophic event with the attitude I just outlined above, kudos to you for achieving such a high level of spiritual maturity. But that might not be a helpful gem to share with a parent fighting pretty desperately TODAY to KEEP THEIR KID HERE WITH THEM. HERE. ON THIS PLANET.

We believe in Heaven here. We regularly pray to all of our friends up there, especially those who meant so much to us early in our brain tumor journey, friends who battled cancer or brain tumors who did not survive. The night before G started chemo this time around I imagined calling all of our Heaven friends together…Nora, Marge, Sandra, young Nora, Hadley, Timmy, Dani-Ella, Emma, James, Joe, all the Grandmas & Grandpas…I called them all, and they came together in a big room in my mind, and I spelled out the game plan…they needed to bug God every day for this blasted chemo to work. We would hit the tumors with everything known to science on this end, and they needed to pull for G on their end…G knows she has a team on the other side of the field, and that helps her. I could really see this in my head, and it helped ME.

We believe we will all meet again. But super-spiritual reflection about “I’ll give my child back to God freely!” from someone not in the battle doesn’t come across as shared wisdom, but rather as condescending spiritual one-upsmanship .

We may need to come to ACCEPT that reality some day. Just not today.

I have heard other brain tumor parents share their acceptance of their child’s imminent death in a way that is heartbreaking and full of dignity. This is different than someone whose child IS NOT in that moment saying “I’m ok with God taking my child”. It’s easy to say that when He shows no sign of doing such a thing. Theoretical acceptance is Very, very different than the mightiness needed to gently lay down the sword and hold your child as they step into Heaven.

To my brain tumor and NF family who have had to live this mightiness, my heart is with you.

b. “Well, this is God’s will for you…” or “God’s will be done”…

Yeah. I guess that is supposed to be comforting? Or that in saying this is what God wants, we are supposed to be ok with it? I am not ever sure what the thought process is behind this statement. Maybe it’s just a way for the speaker to a) make the utter unreasonableness of catastrophe seem logical or b) once again emotionally separate themselves from the pain of the other person’s moment. I really don’t know. But it isn’t helpful.

When G was first diagnosed, we had a week in which a) I found out she was going blind—like, truly blind, she had been compensating so well, and we had so many other chemo related issues then, we didn’t know b) something I treasured was lost c) our patio table got smashed in a storm. This was in between miserable treks to a hospital in another state every week…and G coming into my room every night at 3 a.m. just feeling sick…That table breaking WAS the straw that broke this maternal camel’s back. As I cleaned up broken shards of tempered glass from my patio, I burst into a song I composed for the occasion entitled “God Really Hates Me”. It had a catchy tune…

Ok, so I needed more than a little help at that point. I think God helps us through tough stuff, I don’t so much think His Joystick Really Does Get Stuck On Smite (yes, another Top 40 Hit of that particular season of my life).

Saying that catastrophe is God’s will for someone is kind of like singing the refrain to God Really Hates Me, but filling in YOU for Me. At least that’s how it comes across. Even Jesus had trouble with God’s will right at the end of His life. Did He do what He had to do? Yup. Did He pray “please God take this cup away from me?” Um, also yup. So if JESUS had to struggle with this idea….I figure parents struggling with this are in good company.

Whatever your beliefs about how God works, the “this is God’s will for you” doesn’t help people mid-crisis. Really. Unless you actually saw a heavenly finger writing those words on a wall, don’t say it. And even then…yeah. Please don’t say it. God’s will for someone else isn’t really ours to say.

Thanks to Christine Dalessio over at for reminding me of this last one. I think I had blocked that one out!

c. I should add, too, from my friend Blythanne, that God may in fact “open a window when He closes a door”, but unless you are a nun singing to the Alps in a classic Hollywood film, OR you actually are sitting on the windowsill, maybe this should be a statement to avoid as well. Folks mid-crisis are not willfully ignoring God’s way out…and telling us the window will come is just insanely frustrating. Maybe it is supposed to be encouraging. But it is just insane frustration wrapped in a cliché.

What TO Say: Like before, “We’re praying for you”. That’s enough.

I know in really, really hard times, I have no words for prayer, and I deeply appreciate my friends and even strangers who pray for us. That’s a language that is never wrong, no matter the differences in dialect or vocabulary.
Or, if saying anything seems wrong, just send a card that says you are praying or just thinking of the person. One of the most beautiful things we ever received was a card that told us someone had arranged for a healing mass to be said for G at a special Catholic shrine…and that person was one of Dave’s coworkers, a lovely gentleman…who happens to be Jewish. We were so moved by that, the effort he must have gone to to figure out HOW one arranges a Mass…at a shrine…in another country…

With no words, he helped us along the path.

And….the worst thing ever said in the name of religion to parents mid-catastrophe: (and this is NOT something we have experienced, but I have friends who have endured this horror),

d. And I will simply answer it without speaking it. Kids don’t get sick because their parents are bad. Period. God doesn’t punish people by making their children sick. A child with a catastrophic illness is not a rebuke for parental sins. Yes. I do know people who have been told this about their children. Really.

To those who say those kinds of things: read your freaking Bible. The New Testament parts (ie the more “recent” chapters). The ones where He actually said things like “hey, this person wasn’t born blind because of the sins of the parents”. …I mean REALLY.

And I know, honestly, that I’m preaching to the proverbial choir here, NOBODY who reads this blog has ever done that. I am confident of that. But it merits saying, if only because of my friends who have had to suffer those hateful words. And if you want to share this…be my guest.

Sigh. Those are my thoughts about What Not To Say : Holy Edition . And thank you to all of those people who do pray so faithfully each day for my G. We are grateful. And I’ve stopped singing “God Really Hates Me”, so there has been SOME kind of healing here, right?

Saturday, January 21, 2012

What Not To Say Part II: Merely a Flesh Wound!

Part II of What Not To Say, my tv show where people find out what NOT to say when talking to someone battling catastrophic illness. In this episode…

2. Merely a Flesh Wound!

a. “It’s all going to be ok”

I would suggest that for most people battling any kind of catastrophic illness with their children, the whole THING that makes it catastrophic is the underlying theme of “This really, really might NOT be ok”. Saying that it will be might make you feel better, but it makes the warrior or caregiver want to drop kick you (ok, maybe that’s just me) because it invalidates the depth of yikes being faced.

In Chemo Part 1 Section 2, back in 2005, one mom said to me, after finding out G had brain tumors (because G happily mentioned at her brother’s Little League baseball game that she was going to go on a Make a Wish trip but she wasn’t sure why—awkward!), “oh, but if the tumors are benign it’s not a big deal, right?”…to which I think I responded something like, “well, she’s still on CHEMOTHERAPY, and we can’t get the tumors out, and there’s no room for them to grow?” ; I didn’t even get to the vision loss and the neuropathy and the anxiety issues… and that was the last she ever spoke to me about it.

We don’t use the B word anymore. Nothing about the last 7 years has been benign. But I digress…

No parent EXPECTS people to understand the yikes. Truly. But don’t downplay it, dismiss it, or otherwise indicate that It Really Isn’t a Big Deal. Better to say nothing than to trivialize the crisis.

Honestly, I have some friends who CAN’T talk to me about my daughter’s illness, and I respect that and love that they are still my friends…the reason they can’t talk about it is BECAUSE the woe is so huge and scary. And part of ME being a friend to them is respecting THAT pain. I have friends who feel deeply about what’s going on, so deeply that they can’t talk “shop”. That in and of itself is an acknowledgement of OUR pain, and I see that as love. Does that make sense?

That’s technically a sneak peak of “Normalcy is Not a 4 Letter Word”…

Anyway, I get that it’s a hard balance between Uncle Clem and Pollyanna, but it is one worth at least trying to achieve.

WHAT TO SAY: “I am sorry. This must really rot.” Just acknowledge the yikes.
Or, “I can’t imagine how hard this is. I am just so sorry.”

That’s it. Thank you for acknowledging the reality of the situation. That means a lot.

b. “God doesn’t give you more than you can handle”

I’ve written about this before, in an earlier blog. He does. That’s ok. I mean, He does, but saying He doesn’t again diminishes the pain of the moment. It does not EASE pain, it just brings on this feeling of “well DANG, I am even screwing up being smote because this sure as heck FEELS like more than I can handle!” God may give us grace for each moment (sometimes even THAT is hard to tell), but that’s a different issue.

WHAT TO SAY: “Hey, I’ll pray for you.” Or, “I wish I could make it better.” We wish that too, and we appreciate the acknowledgement of our pain. (at least I do).

A sub-whatever of this is

c. “You are SO STRONG!”

Ok, so this is not an offensive thing to say. It’s just kind of…separating? Isolating? Like, the person battling is so strong in a way that makes them Different. Catastrophic illness is different and isolating enough. While this is really not said in a way that is meant to be sniggy—to the contrary, I think it’s supposed to be upliftin?-- admiration or whatever that is (fearful respect of the “there but for the grace of God go I” variety? ) isn’t quite what a warrior/caregiver needs.

Speaking from personal experience, “strength” is not generally the feeling that one has mid-battle. Sleep deprived? Stressed? Irritable? Hungry? Not hungry? Unfocused? These are better descriptions of way I feel most days. As a parent caring for a child with a catastrophic illness, I would LOVE to just hide under my bed some days. I do vacuum under there, it’s clean and my bed is pretty high up (it’s kind of old fashioned), so I would fit. I could live under there and just pretend that none of this ever happened.

Heck, there were days when my kids were all little that hiding under the bed seemed like a plan. Those toddlers can ALWAYS find you. I didn’t have a choice THEN. I certainly don’t NOW. Maybe doing what you ‘ve gotta do is strength, but it just feels awkward and stupid and kind of isolating to hear it said that way. Until I have a patriotic bustier and a Lasso of Truth (and the physique to literally carry that ensemble, ahem), I am not Wonder Woman. So this should go on the list of things to please not say.

WHAT TO SAY: “Your kid is so mighty.”

I know. This seems like the same thing, but I don’t think it is. In my mind, mighty acknowledges that something tough is being faced, perhaps with anxiety and trepidation but ultimately with resolve. It’s a semantic difference, but mighty seems more accurate. Also, I think my kid is WAY MIGHTIER THAN I AM. So thank you for noticing. : )

Next Time: I Thank God Almighty That I'm Holier Than Thou .

Friday, January 20, 2012

TV Pitch: What Not To Say!

Television Pitch: What Not To Say!

So I had a block of time yesterday to just sit and think, in between snippets of Adele and the jackhammer like sounds of a Siemens Magnetom, and I realized that there might be a niche market for a new show called “What Not To Say!” . I don’t know if Clinton and Stacy from TLC’s What Not To Wear will be available, but I have a couple of fabulous sisters who could likely stand in as hosts. Their job would be to swoop in on unsuspecting people who say ABSOLUTELY THE WRONG THINGS when dealing with catastrophe. They would burst in unannounced, surprising the miscreant mis-speaker, and take them on a whirlwind training of WHAT NOT TO SAY. At the end, the reformed guest will be released back into the wild, er, go home, and be better prepared for the next challenging conversation with someone who is being smote.

I don’t mean people who are just obnoxious: I am talking about situations in which truly, there is NOTHING good to say. Some things really are so big and challenging and yikes, there just are no words to answer the alas—and I think people dealing with a massive crisis appreciate that. It’s almost unfair to think that anyone can have a CLUE about what to say. But sometimes even things that are meant well are just said epically wrong. Some things that truly just shouldn’t be said.

Other families dealing with crisis might take issue with my list. I respect that. This Magnetom inspired collection is reflective of our family experiences and my personal biases. As I go along, if anyone wants to add THEIR input to the list, please do!

So here’s part one of my quick and handy guide for the public, in case my show does not get picked up by TLC. Also included (BONUS!) are things TO say…also based on family experience. Thank you, friends…

First WHAT NOT TO SAY category:

Horror Story! Aka “Who Told You You’re Allowed to Rain on My Parade?”

a. “My Uncle Clem had (insert catastrophe of choice), and oh my gawd, it was horrible! His hair fell out, he couldn’t remember Aunt Tildy’s name, he walked into walls, the medicine turned him purple, and then he DIED. It was awful!”

I have NO IDEA why folks feel like someone dealing with a catastrophe is served by hearing about the Woes of Uncle Clem. If you know someone who died horribly after the same catastrophe your friend is facing, keep it to yourself. Really. It’s not motivational. It’s not a common ground that ANYONE wants to share.

Knowledge is not always power. Sometimes, ignorance really IS bliss, and if Uncle Clem spontaneously combusted while battling what my kid has, I truly don't want to know. That knowledge serves no purpose other than to drive a parent one step closer to insanity...which is a short walk sometimes, mid-battle.

In a similar vein, moms with kids should NEVER tell newly pregnant ladies about their labor horror stories. I don’t. Heck, I try to avoid telling them my pregnancy horror stories. The world needs to be populated. These stories don’t help.

WHAT TO SAY: “Hey, my Uncle Clem battled (insert catastrophe of choice). It was a tough road, but he’s doing great!”

If you have battled THE SAME catastrophe, feel free to share hope! Hope is slippery, and folks mid-battle can always use more experience-based hope.

b. “Well, side effects take a few days to show up"

Yes, there is some bias in this one, since someone said it to my cheerful 13 year old last week as she was bubbling with enthusiasm over successfully starting her new chemotherapy and NOT feeling instantly hideous. Her relief was palpable. This person rained on her parade. I have not yet crossed paths with her, but I will be sure to carry an umbrella.

YOU NEVER NEED TO BE “THE VOICE OF REALITY” FOR SOMEONE BATTLING CATASTROPHIC ILLNESS, ESPECIALLY A CHILD. I assure you, even a kid knows that what they have is serious. They know what reality is, because after your one sentence smackdown of their hope, they have to go live the rest of the days and weeks in the reality they are in. They still have at least 180 doses of that chemo before we even get to check if it’s working. They hang out in oncology clinics. Strangers stick them with needles and poke and prod them and talk about scary things while you are back getting groceries or whatever normal life you have. You do not need to be someone else’s Voice of Truth. Really. That’s why we have doctors and WebMD.

Only kidding, just the doctors part. Ahem.

WHAT TO SAY: “I’m so glad today is a good day for you.” See? That’s not hard, right?
OR: “I’ve heard that hospital is really great”…
”just read that a lot of research is being done in (insert catastrophe of choice)”…
again, foster realistic hope!

Stay tuned : More this season, er, week, on What Not To Say:

Merely a Flesh Wound!

I Thank God Almighty I am Holier Than Thou!

And Normalcy is Not a 4 Letter Word

Thursday, January 12, 2012

Tsunami of Nice

Well, we are 4 doses into Tumor Battle 2012. TB12 kind of whomped any other feeble New Year’s Resolutions I might have conjured up – and really, how many times can everyone read “this year I will write in this blog more”? . TB12 trumps all.

Only 600 some odd doses to go…if it works…sigh…

So far we are managing through
1. bedazzling everything in sight (t-shirts, chemo “diary”, anything that sits still too long)
2. avoiding all of humanity whenever possible
3. wild Just Dance parties (which are not all that well attended in light of point #2)
4. very loud playing of Green Day in the minivan, which apparently has a Killer Sound System. Nice.
5. random acts of carbohydrates
6. extreme consumption of Christmas chocolate.

And this is just how I am coping as mom!

We’ve had moments of every make and model over the last several weeks. Honestly, spending the holiday with the Ghost of Chemo Future was kind of a bummer. There was almost some relief in STARTING the process for real, after all of the nauseating ups and downs of the last 6 weeks. Laughing, crying, yelling, terror, jollity, love, hate, safety dancing…I feel like we live in a Telenovella but in English.

Even so, I really was not prepared for the Tsunami of Nice.

Since December 5, our own personal Day that Will Live in Infamy (along with 7 years’ worth of similarly woeful days, a veritable Whitman’s Sampler of Medical Woe), we have been overwhelmed by the Tsunami of Nice. Thoughtful Cards. Meals for our family (that we can freeze for hospital days). Tchotchke for G that make her smile and giggle and delight. Notes of encouragement. Random acts of chocolate (there are Cadbury enablers out there, and you Know who You Are!). Prayers. A sparkle Mary (don’t ask, but it was very heartfelt and given in love). A phone call from a Grammy nominated musician who happens to be one of G’s favorites. Hugs. Non-hugs from people who know that hugs make me cry. Text messages. Carpools. Normal things that in this oh-so-not-normal moment become hugely important to us.

A Tsunami of Nice.

We are so grateful. It’s hard to express this (again, see point 2 above), I hesitate to talk to people because I never know exactly what moment is going to be the one to trigger my own tsunami of tears. Some days I can be a medical encyclopedia, coolly relating facts & findings and whatevers, the next day, heck, the next MINUTE I am sniffling when trying to say the word Oncology. It’s ridiculous and embarrassing and whatever. And really, I know a LOT of people don’t know what to say to us. We are living every parent’s worst nightmare, and there is nothing good to say. So I hide.

But because of this, this awkwardness of communication, this painful everything, we never really get to tell people just how grateful we are for the outpouring of kindness to our family and especially to G. We really do feel like a flood of goodness is helping us float along through this massive yikes.

So thank you all…

I have learned, too, that stress makes me stupid and very unfocused. So I have a lovely pile of good intentions here that rivals the pile of thank you notes I could and should write to everyone. I just forget…everything these days. This makes for a very interesting time at work, considering I am a history teacher…but anyway, please know we are so grateful.

In all of the horror of what we are fighting – and sometimes, the reality of what this is just threaten to swallow me –but in all of this horror, we are so honored and humbled to see how each individual act of kindness and love, even from people we don’t really know, comes together to create this massive Tsunami of Nice.

We just need to try and ride this wave through the next few months, and pray that it fuels G’s mighty chemo ninja skills so she may utterly prevail in TB12.

Thank you.