Reviewing the Situation

8 years. Sigh. And still  that smile...

Text.
Context.

Subtext.

In the weeks following Miracle Monday, I’ve been sifting through completely foreign feelings and ideas. Good news of that scale has NEVER happened to us in oncology world. Only a few days after the scan, I started waking up with questions about what we had seen, what did it mean, how did this happen?
August has not traditionally been a super awesome month at the Casa Camiolo. G remembered the other day that it should have been her “done with chemo” 6 year anniversary…if um, she hadn’t had to be back on chemo again.

Last year I read a book about teaching history in which the author (Bruce Lesh, “Why Don’t You Just Tell Us The Answer?”) talks about having students DO history instead of just being fed dates and facts and yawnfests of boredom. Primary source analysis is one way that Mr. Lesh suggests that students can DO history, and he suggests 3 handy points to consider.

Read the Text. What does it say? (Diminished mass, decreased mass effect, diminished enhancement. Words that do NOT get old).

What is the Context? What facts surround the writing of this document? (TUMOR FREAKING EVERYWHERE. Eight years of roller coaster, more down than up, except for some shaky kind of horizontal kind of leaning over parts. Ahem).

What is the subtext? What is implied, or what is the tone, what is NOT said but said? (this was so much better…how much is so much, really, in the big picture?).

I realized that we compared the scan to May, which was the baseline for this protocol and which I had heard was essentially identical to the tsunami of woe scan that we had in April. I refused to see the May scan, an epic first and a vague attempt to not completely descend into despair.

So I asked about our subtext, how did this scan look in relation to December, the scan that started us back on chemo? What was it NOT saying?

This scan WAS a bit better than December, our doc remembered that and then we checked together when the girls and I were next in clinic. This is a relief.

I am so grateful, so grateful for this time.

I am also aware of the context of this wondrous news…we are a little better than December…which leaves us still with a massive amount of tumor.

This does not diminish the wonder of that day. I still thank God EVERY DAY for this blessing, this time, this time that equals hope.

I think…I only just started seeing people again, I am getting back towards school and now I am running into folks who have prayed for us for so very long, people who are SO HAPPY for us, and I am so happy too…

Is it weird that I feel like I am misleading people or something by not adding in “we still have massive amounts of tumor?” I don’t want people to be like “whaaaat?” if things turn again, or something. I know, I am a psycho.

I feel like there is a tiny asterisk that accompanies my happy, and that is bugging me, but I know that in truth most folks didn’t really know how bad things were, most folks don’t really know the scope of things, largely because it’s all insanely complicated and depressing and I am ridiculously shy in real life, so I just make sarcastic snarky commentary instead of real conversation.

Knowing that chemo is working is AWESOME…the text! Context…chemo inherently stinks. Subtext…the unsaid…now we can continue doing this chemo. It’s not like G is all better. And I know how Avastin can sometimes work…or not…but today it IS working and I am clinging to that.

So we find ourselves in an interesting spot. The initial intense shock over our good news has passed, leaving behind a gentle almost-optimism (which is near crazy talk for me, I know you all know that). I still have to follow through on a few of my bargaining with God things, but I am glad to say I have continued to try and make healthy choices for me in other areas (ie no more reading the Blog of Insane Lies About Health. This one actually does take some willpower, righteous anger is often preferable to terror over our medical reality. Ahem.) I am making progress, in teeny tiny increments.

People are so happy for us, and I am too. We have time, and time equals hope. That day, August 6, will ALWAYS be Miracle Monday for us. I needed that pep in my step to get through the half marathon we signed up for in 2 weeks for NF Endurance. I needed the cloud to lift a bit so I could try and focus on the courses I’m teaching this year. I am so grateful for this reprieve.

I think I am just a little scared of happy.

Tomorrow is our 8 year mark. And that, all those years, just…everything…that’s context that weighs heavily some days, even as we feel the sun of hope on our faces.

Eight years ago everything in our world changed forever. Everything. And I am so grateful that we still get to fight.  September 1 starts Pediatric Cancer Awareness month. A lot of my friends don't still get to fight, their battle now is to keep going and to cling to the hope that they will be reunited with their children some day.  I am grateful for time, even as happy scares me.

Fear or not… I may not know how to do happy all that well, but I can do grateful.

And grateful can carry us an awfully long way.

Miracle Monday

I need to tell the story.

chemo power nap

As such, this isn’t really a blog entry, I guess, but I feel like I need to write this down before it gets buried like so many other parts of our memories do.

We left so early on Monday morning, the sky was still dark and the air thick with humidity, the kind only a summer in Jersey can produce. Genna was quiet on the trip, she ate her jello before 6 a.m. and then just stayed pretty quiet. I had only slept about 4.5 hours, sometimes on the night before a scan I stupidly don’t go to bed, as if by not going to sleep I can prevent tomorrow from coming.

Just south of Lambertville, near the jail and the environmental center (interesting mix, right?), I was going to mention to Dave that we often see vultures there…seriously I started saying, “you know, a lot of times…” and then had to stop, a flock of about 30 vultures was wandering about the middle of the little 2 lane road next to the canal. Um, yikes. I would prefer to see a rainbow on the way to scan day, you know? Not a carrion eating scary as all get out massive bird yikes ew confab in the middle of the street.

We continued on.

We were making good time, and then in a very unusual place (around exit 40 on 95) traffic stopped…apparently a truck had flipped over, we learned the Philly traffic channel pretty early in our pilgrimages to CHOP, we were stuck and I kept trying not to obsess at the clock, wondering if I would have to call MRI and tell them we’d be late. Leaving the house at 5:23 a.m. and then being Late just adds insult to injury.

I was going to take a picture of the truck when we passed as part of my photo archive (my anemic photo archive, admittedly), but then we saw it, and it was bad, it wasn’t just flipped, it had come from the northbound side of the highway, crashing through a guardrail, hurtling across the steeply sloped median, and then crashing through the guardrail on our side, ripping off the front of the cab in the process.

I prayed for that truck driver. I hope he survived.

After everything, we DID get to CHOP on time, Dave dropped us off by the door so we could sprint in…we got sent over to Seashore House, the nurses all said hi…this is G’s 5th MRI in 9months, that’s a frequent flier by MRI standards, so a lot of folks remember her. She got measured (the nurse said she was 4’ 11”. Not sure that’s right, but G was happy), into her hospital garb, ready to go…

And then the nurse tried to access her port.

G had to lie down, which she HATES, and then for whatever reason she felt it, the pinch was awful, not sure WHY the lmx didn’t work…and the nurse got no return flow, it wouldn’t flush, nothing. To her credit, she called the IV team instantly…but then the iv team lady came down and just looked at the port and said, “let’s call oncology”. Well, that’s the quick version, her English wasn’t super great, and she wanted me to go with her and see if we could get someone in the day hospital to do the port. So we wander through a new back secret passageway I haven’t been through before and ended up banging on the back door of the day hospital. The nurses let us in, we tried to explain the situation, they said um, you have to register (what, you can’t just sneak in the back and have someone access the kid? Yeah, I guess I get that), so I had to go out to the main desk and explain everything, register G as a patient there, get her paperwork, drop it in triage, by this point they had G in all her hospital garb glory paddling along behind another nurse as I tried to explain to our nurse (and our doc, who happened to just be getting there) that we were having a Port-tastrophe.

I am not going to lie, this whole scenario pushed me to the brink. The level of stress coming into this day was mind blowing. This glitch in the day threatened to wreck me before we started.

The day hospital nurses finally got G accessed (in one simple stick. Lesson learned, schedule access for clinic), and we marched back downstairs, already late.

Finally we get G back, start the sedation process, she got her Versed, told her jokes (at least she had new ones about Cows), hugged and hugged us, and then fell asleep. They wheeled her away.

Dave went to get the promised Doritos.

Sitting in the dim sedation room, the cranes of the new construction site across the street just visible through a window across the hall, I completely unraveled. The pain of that hour…

All I could think of was how many of our friends and people we don’t know have sat in those rooms, waiting, waiting for news they know will likely not be good, trying to cling to hope, trying to not think of the outcomes that we all know happen in our brain tumor community. I thought of my CHOP mom friends who have travelled the hardest of final roads with their children in those same rooms, I was praying so hard, not even praying just begging God, but knowing so many other people who have begged and then things still are…well, what they are.

Finally I went back to my diphtheria book. Yes, I am still slogging through that.

Dave returned with some food, I did try to eat a soft pretzel, I read, but then the clock was ticking on, an hour, an hour ten, an hour fifteen…now we are late, she is still in there…and I started to pace, 5 steps, pivot-step, five steps, pivot-step look down hall to scanner rooms, five steps back…over and over. My stomach started roiling ominously. Only once have I ever actually thrown up at CHOP, our first night there ever, the stress of that night pushed me over the edge (digestively and in other ways), I still can’t eat those lovely pecan sticky buns from Panera. Alas.



I had that feeling again.

Finally they brought her back after 90 minutes, she had woken up 2x so they had to stop things so she could get a boost of medicine.

“I am not sleepy At all,” she kept telling me, even though she could hardly sit up because of the sedation. She munched on some crackers and sipped juice, we got our papers, we were free. (Indigo Girls moment there).

She wanted to go to the 2nd floor lounge area for a bit, we got her on PBS kids (her favorite, I know it’s so young, but she loves those Zoom kids from years ago), I posted a quick update to facebook, and then it was time to go upstairs.

My stomach lurched about as we got G settled, we got her labs, we parked her in the playroom (she gets a wheelchair after sedation). Of course I took her to the bathroom just before I remembered they would need a sample to check kidney function. We had the same moment early in the day when they had to make sure she wasn’t pregnant. Yeah. Don’t get me started.

Panic has mass. Terror has claws. I can’t even put the feeling into words, the intense pressure of that hour wait. I felt like my insides were just folding down smaller and smaller inside me, my begging got frantic, I began promising God all kinds of things, I will Let It Go, the whole issue with my family member who says hateful health things for money, I will never mention it again…then I re-thought that, because standing up for what’s right isn’t something to give up, but I did decide to Not Obsess about it anymore, to not engage unless I need to in person. To make ME healthy so I can be a good mom to Genna. I promised to make all the long neglected doctor appointments for ME that I have put off in my own anxiety and paralysis…the dentist, the annual, the counseling, heck, even the vaccinations I need boosters on (if safe, I had to ask the doc that first)…please God, I will do anything.

And I started to pace again, along the wall by the day hospital desk, 12 steps, pivot turn, 12 steps, pivot turn, try to look nonchalant while inside my mind was screaming, screaming.

I was freaking Dave out.

I sat finally, and held my head in my hands, willing my stomach to settle (fail!), willing myself to not just lie on the floor until someone called environmental for clean up. And then Dr. B came out and called G back.

And the ice formed, a case around the hysteria, and we walked back.

We were in a different room than usual, that was unsettling, but at least this room had a colorful wall. The bt side of clinic moved, and a lot of the rooms are still plain white, and that bugs me in a completely irrational way. Paint the dang walls fun colors already…

We waited in the room a minute or two, Genna decided to practice puffing out her cheeks, the last few neuro-checks she’s had she gets totally giggly at the cheek puffing point. So she was practicing that when Dr. B came in. She started chatting with G.

This is one of the things we so love about Dr. B, the way she is with Genna, but on scan day she usually gives us a quick “it’s good” before chatting, when she doesn’t it usually means something awful is hitting the cosmic fan.

“You can check me and then I am going out I do not want to hear ANYTHING,” Genna announced after cheek puffing was done.

“not even good news?” Dr. B asked.

“No.” Genna answered, “I am going out.”

I couldn’t hope. I couldn’t. But there was a glimmer there…I felt so sick.

G finished getting checked and then decided to wheel herself out the door and down the hall, she got about 5 feet before we could hear “ow” and crashing noises, so Dave went to help her get back to the playroom as Dr. B sat down at the computer. I stood up behind her. After 8 years I am a master at speed reading over the doc’s shoulder.

And there was the report, she scrolled down…and I saw the words “diminished mass” , “decreased enhancement” …

“it’s smaller?” I whispered. I had no sound in me, just a whisper.

Dr. B looked up at me. “It’s smaller”.

Dave came back in , I didn’t even look around, “David, it’s smaller…”

One tear rolled down each of my cheeks, I did NOT want to start crying but the flood was so there, those tears just quietly leaked out , I grabbed a tissue off the desk by the computer and Dr. B proceeded to show us the pictures.

I am crying even as I type this.

I don’t post MRI images, I just can’t do it, but in context, April’s scan was horrible. We have never seen one so bad, I refused to see it on two other occasions (a first for me), the growth was catastrophic. G has been having dizziness and some eye issues, how could that NOT mean progression?

But pictures don’t lie. Well, MRI pictures don’t, radiologists don’t have photoshop.

The new scary area was a fraction of what it had been. A fraction. From slide, to slide, to slide, to slide, it was smaller by every measure on every slide. The ventricles were back to a near normal size. The giant mass was just a thumbprint, the bright spots were now flecks or invisible.

I just kept saying wow. And Holy Toledo. And wow again. And Holy Toledo. To say that we were shocked is such an understatement. I have never seen smaller tumor. Never.

“This is an amazing scan,” our doc said, and we laughed about how it did not get old, flipping back and forth from May to now, May to now. (we compared to the baseline, not the actual first trainwreck scan in April, but the two scans in April/May were the same).



We knew what the stakes were going into this. My anxiety was legit, and Dave said, “I’ve never seen you like this”. He apparently forgot 2004 and 2006, but yes, it’s been a long time.

I had to get Genna. She needed to see this, so I left, and bopped, BOPPED down the hall, I could see her in the playroom, asleep in the wheelchair. Apparently she WAS a little bit sleepy. ; )

“G, “ I said, and I could feel those two lonely tears threatening to become a tsunami, “G, your tumors are smaller, they are way smaller!”

Her eyes got wide, and she said, “they are?” …and we high fived, and Dr. B came out to roll her back…she needed another blood pressure check due to a typo in MRI, but G was fine, and then we showed her, we showed her the big white blob and the small gray blob (it even picked up less contrast), we showed her 4 or 5 pictures and she was so happy…

I hugged our doctor, and we paraded out to the playroom and then nearly immediately to the day hospital. They were ready with G’s chemo.

I seriously felt so shocked, shock, too, has mass, like you are inside a giant balloon…G was planning an immediate pizza party and inviting Dr. B for good Jersey pizza, Dave and I started texting…

And then the shockwave continued, sharing that news, sharing it with our families who knew, who really knew how bad things were, and with our close friends…the shockwave of everyone who expected the worst in that text, and instead got “THE TUMOR IS DRAMATICALLY SMALLER!’…it was humbling and beautiful and scary and a treasure. I just …

There are no words.

Which is a funny thing to say 5 pages into a story, but you know what I mean. I don’t know how to describe that feeling, of feeling the bounce back from everyone literally hitting the ceiling wherever they were, rejoicing for my little girl, our family, this blessing, this miracle of science…

Our doctor joked that she was going to come back and check on me, because I was so boggled. No joke, I was.

G slept through most of her chemo, we texted and texted, I called up to Rosie’s camp and cried with the nurse there over our good news (she went to find Rosie for me), and then when G was done we headed home…and my sisters met us with Costco cake and pink champagne, and we rejoiced and cried and just rejoiced, and we toasted The Scan That Did Not Suck.

I did make my dentist appointment already, and I am trying to find a doctor for my other appointments. I am trying, trying so hard to make this reprieve count, to be the mom I need to be for G, the mom I used to be…to make our home less yikes, to make our family be more like it used to be. I am trying to to let new anxieties creep into the space left by that pre-scan terror. Rosie scans next week, so I do have some legit worries on tap, but… We have time, and time equals hope, and we are so grateful for both.



So that is our scan day story. This is rough, but I had to write it down so we do not forget the Day we Had a Miracle.

Sparkly Rainbows For Real

So I promised sparkly rainbows and ill-advised tattoos, no more ranting about medical conspiracies, the Malibu Jesus Complex (“I shall Heal Thee With Mine Awesomeness”), or how there are so few things in food /medical life that are 100% true for everyone (such as...carboplatin/vincristine is a gold standard of medicine for many low grade glioma kids. Just not mine, which is what it is.  Or... I can pass on bread, my BMI is normal in spite of myself—ie through zero goodness on my part, it just happens, it is a blessing for which I am grateful-- but don’t touch my chocolate. I am wickedly and unrepentantly addicted to chocolate).  Life is variable.

So I make this rash promise to Behave Myself, and then I go on vacation, which was lovely…and I found myself really having a hard time putting behave myself words on paper. I forgot to bring my Cadbury, maybe that was the problem…mini-egg withdrawal?

But I did actually have a sparkly rainbow moment a few weeks ago, a for real literal sparkly rainbow moment.

My second born is a compulsive mail-getter. The mailman or mail lady or whoever is on for the day always knows G, she waits at the end of our driveway if she sees the truck coming, she checks the box a few times each afternoon to make sure SHE is the one to bring stuff into the house. This might date back to the Hat Hunt of 2006, when G was losing a lot of hair fast and through the efforts of my sister Who Makes Things Happen, hats started arriving in the mail every day, buckets and buckets of hats, she received 150 hats by the time the hunt wound down. We had post office bins coming out the wazoo, and hats of all kinds…

She LOVES to see if anything is in the mail for her.

(Yes, we STILL sing the Blues Clues Mail Song. I probably will until I am 90.

I kind of hope I do, that will make my great grandchildren Berserk. heheheh.)

(I should take a moment here to give a shout out to Miss Connie, an online friend who has sent G letters and cards nearly every single week for the last several years. Yes. Years. Much love to you, Miss Connie from Louisiana. You may never know how much this means to G).

So G dragged in a pile of mail, and there was a letter for me. An actual letter for me, not a “letter”, you know, the ones that come with your name “written” on the front, and on the inside it’s just a charitable request or an ad for rug cleaning. My sister (the One Who Makes Things Happen…well, the first one like that, all of my sisters have followed her Mover and Shaker path) had sent me a letter.

Inside the envelope: a package of sparkly rainbow stickers, little metallic rainbows in varying sizes, and a note about the joy of rainbow stickers and how I didn’t have to share.

I had a feeling not unlike the Grinch when his heart grew three sizes.

Like this, but with glasses.

Rewind to 1983. Sticker collecting was EVERYTHING. My sister and I would save our pennies and go to Sweet Samantha’s and spend inordinately long periods of time agonizing over which Lisa Frank stickers to choose. At 25 cents a pop, you had to budget. We organized our stickers into smellies, fuzzies, sparklies, tiny tots, animals, Wacky Packages, unicorns, rainbows…stickers were a source of great joy. We would trade them in scenes straight from the floor of the stock exchange. Stickers were Serious Business.

this would have been the Mother Lode for us...holy Toledo...

we would have had to babysit for YEARS to have this many Lisa Frank stickers.

I only JUST found my old sticker book and finally emptied it, apparently 30 year old stickers kind of lose their stick…but a lot of them I did save, including all the sparkly rainbows…those were a prize…

So in that moment, opening that envelope, in the middle of a chemo week, as I was barely holding any kind of normal together, I had 8 glorious sheets of rainbow stickers ALL FOR ME.

This made me so happy, and loved, and just yay. My sister knows me best.

I stuck 2 on the hospital binder…which, after all that angst, I realized is just too unwieldy to carry to clinic every time if I also have to carry a large purse/tote, so I use it as a mobile file and carry a multi-pocket folder on regular visits… the rest are still there, waiting to be stuck in any place that I can think of that needs a sparkly rainbow.

Really, what place DOESN'T need a sparkly rainbow?

I’m not even sure if it was the stickers that made me happy, or my sister’s thoughtfulness, or both. I was just so tickled by those stickers. So here’s my sparkly rainbow question for all of you: Do you have any blast from the past kind of thing that just makes you feel warm and fuzzy and nice? You know, a song, a smell, an object, anything that just brings you back to a happy time, or at least a happy moment in time?

Maybe if you tell me, I’ll share a sparkly rainbow with you. I just finished off the Cadbury eggs while typing this, so…yeah. I only have stickers to share. : )



No Magic Bullet

Ok, so I’m no Pollyanna.

I will wait for the gasping and fainting from shock to subside.

I tend to see the glass half empty and about to fall off the table, where it will crash to the floor in a spectacular display of What Gravity Does. I am a master at the art of defensive pessimism, a mastery born of getting epically catastrophic news rather too many times.

This doesn’t mean I have no hope. Hope really does spring eternal, even if it’s just a tiny kind of stunted looking sprout in the garden of yikes we tend here. But hope does live.



FALSE hope I have a huge problem with. False hope is like fake flowers in my garden.

                                            I don't think blue roses occur in nature. Yergh.

Ew.



This kind of builds on my last post (if I asked you to read this blog, it was for my Ode to Oncologists, please do read that…and feel free to read on, if you can stomach it). I suppose I should insert a GIANT OPINIONS ABOUT TO COME FORTH! Warning here….



A ginormous part of the reason we so trust our doctor is because she has never given us false hope. When things have been dire, she tells us. You have to be educated about the enemy you fight, and if things are grim I need to know so my spouse and I can choose the right weapons to fight. We know that the statistics of success with any chemo protocol are garbage. We know this, and no one ever promises us otherwise.



That said, we do have hope, because within our community we know kids who have found stability. For 5 years my second born WAS one of those kids. I have to hope we can get back there again. Today a spot of headache and dizziness have made that hope slippery…sigh.



Understandably, any parent in the spot we are in would LOVE promises of sunshine and wellness and sparkly rainbows. All of us would LOVE the magic bullet, the thing that will make all of this suffering go away. Heck, that’s why so many parents and family and friends of people battling awful illnesses work so hard for research dollars.

not this kind of magic bullet, we do have one of these for

all the healthy smoothies my kid refuses to drink.

 

(As a side note, there is a reason most anti-cancer/anti-NF efforts are geared towards treatments and less towards prevention. Imagine a house is on fire. Smoke! Flames! Alarms! Your first efforts of course are to rescue anyone inside and put out the blaze. While those flames are burning you may want to hold off on studying why the fire started and how to prevent future fires. You quench the flames FIRST. That is why research tends to have that treatment bias. As a parent searching for an extinguisher, I appreciate this. It’s really NOT a pharmaceutical conspiracy, I promise. There is a reason. ).



Unfotunately, there is no magic bullet.  (except the one above)



Yes, we can do things to be healthier, eat right, exercise, brush our teeth, floss, wear a seatbelt, wear sunblock, get enough sleep, find spiritual and emotional support. We can and should do these things…



But there is no magic recipe for healing. Sometimes it happens, sometimes it doesn’t. Some illnesses are more curable than others. That’s just the way it is.



From a religious standpoint (my lens here is both secular and religious), God promises us that He will give us the desires of our heart, He says He has a future full of hope for us…but He doesn’t exactly specify WHEN this stuff is going to happen. Religious texts (Bible and otherwise) are full of stories of people who generally had a really rotten time of things. The best, most faithful people got smote. Life happens, even to good people. Some of their stories truly don’t end well…but we believe that ultimately there is more beyond this life.



As friend to a lot of people who have lost their children, this hope is so critical, this hope that we will meet again somewhere where brain tumors and NF and cancer are not even memories.



God promises He will be with us, even mid-smitefest, even if it doesn’t feel like He is. Sometimes that means stable scans and a break from chemo. Sometimes that means having the chutzpah to go into chemo with a smile and an awful animal joke for your oncologist.



And my point is?



God does NOT promise that if we eat a certain way, or exercise a certain way, or buy a certain program, that we will be “doing His will!” and thus be preserved from illness. He does not say this. Ever.



Even if good looking and charismatic people say that He says this…He doesn’t. Within a variety of faith traditions, that’s pretty easy to check. He doesn’t.



Promising people cancer immunity if they cut out sugar and avoid traditional medicine and buy a particular (expensive) program of wellness because That is What God Wants…this makes me insane. It’s not true, and for people desperately wanting that magic bullet, people wanting to be faithful to a Judeo-Christian understanding of the world, this goes beyond marketing into cruel manipulation. Saying people who choose traditional medicine and leave the program die…unconscionable.



“Claiming” healing as part of a program may make you feel good, but I just have not EVER seen God be like “Oh! Phew! You loudly and publically CLAIMED healing, THAT will make all the difference, those quiet prayers were just too blasé. “ Actually, I can think of at least one or two times where God was like “hey, don’t make a big show of praying so people are like, Whoa, that is some hard core praying there.” “Claiming” healing should not become a commercial for a product or program. That is exploitive of the person who is sick, and again, just cruel. Really, really cruel.



And I should say, we have gone to healing services with my G, one with a very famous priest who has a healing ministry. I was so leery…and we got there, and he was the most unassuming man I’ve ever met. “I pray, and sometimes God sends healing,” he explained. No conditions, no “you have to DO THIS”, no guilt or rules or anything. Just a simple faith that hey, asking God for healing never hurts. And he took about 30 seconds and said a simple prayer with my G, quietly, so only we could hear, just asking for healing. And you know what? 6 months later she was sicker than she had ever been, but honestly, MOMMA had been healed of guilt and anger and hurt. I was able to help G, and cling to hope because that quiet, humble prayer so touched MY heart. Didn’t see THAT coming…



I don’t think God is looking for any kind of endorsement deal. He doesn’t need extra publicity or residuals from having His name appear on “wellness” programs.



We all just do the best we can. No one should feel guilty for doing the best they can. No parent of a kid with cancer or a brain tumor knowingly or unknowingly GAVE their child this illness. Implying that choices create cancer “95% of the time” holds a particularly vile form of guilt for parents who are already suffering. Using that guilt to sell something…



Sigh.



I think I have said my piece. My heart is so full every single day for our friends battling, for our friends mourning their lost children. My heart breaks when I think too much about the moment we are in right now. My heart shudders when I fish out the separate calendar I have (once again) just for medical stuff, or when my kid tells me her head feels “funny”.



That’s why I have to say this. And because the claims I mention were made very publically by someone who knows my children pretty closely, I do take it personally. How can you know us and say these things? What cognitive disconnect exists that allows these ideas to ferment in your mind?



But now I have said my piece, and I have to let it go for now, even though I know, despite my efforts, these words will likely never get where they need to go. Now I will go back to silliness, and I will write down the ill-advised tattoos thing in my head and Zen and the Art of Sparkly Rainbows. No more heavy stuff for a while.  Actually, we have some very exciting happy stuff happening in 2 weeks... : )  : ) 

the tattoo I saw that inspired the Blog in Waiting can not be reproduced in a family friendly manner, ahem.  So enjoy the sparkly rainbow.

Thank you to anyone who read this, and can hear it. I appreciate that. And I do pray for our friends every day…that God bring healing, and if not healing then grace for the moment.



You are all much in my heart.

An Ode to Oncologists

I have been having blog overload..too many ideas that I want to spew forth, from ill-advised tattoos to sparkly rainbows…and still zero energy to say anything.


So today, as my second born naps off chemo on the living room couch, I figured I would begin with an Ode To Oncologists.

I figure most folks have a list of people they’d love to meet. I would love to share snarky commentary with Jon Stewart, or have lunch with Bernie Williams, or just behold the splendor of Aretha Franklin. Two years ago I got to meet one of my favorite singer/songwriters, Sara Groves,  and I instantly burst into hysterics as I tried to tell her what her songs had meant to me during some really difficult patches in my life. That was a Meeting FAIL.

I imagine I can pretty safely speak for EVERYONE IN THE UNIVERSE when I say that an oncologist is NOT on your list of “new friends to make”.

I recently heard a talk that briefly discussed oncologists, how if THEY get cancer only 9% will opt for chemotherapy because it truly is useless (I have no clue if this number is even remotely accurate, although based on some of the other gems in this talk I would guess it is Ye Olde Fanny Number, pulled from where the light don’t shine)…how they prescribe poison for people and are resistant to any other treatment options…how they don’t listen, blah blah blah. Basically, if you are sick with cancer, the gist of this portion of the talk was Run Away From Oncologists.

Granted, some doctors have the bedside manner of slugs. Some don’t listen, some are gloomy, some are arrogant.

One could perhaps note that these traits are not limited to oncologists…ahem.

But I can say with 100% certainty that the folks giving this particular talk have never actually met a real oncologist, or certainly never spent time observing one of these docs at work for any length of time.

Over the last 8 years we have spent an inordinate amount of time hanging out in a pediatric oncology clinic at one of the best hospitals in the country. Because of the nature of the community in which we’ve found ourselves, we know lots of other folks who spend inordinate amounts of time hanging out with OTHER pediatric oncologists in other great hospitals around the world .

In our experience, and the experiences of most of our friends, these docs are Mother Teresas with medical degrees and comfortable shoes.

Oncology is not an industry, and I take great offense hearing it referred to that way. It is a vocation.

The first day we met our neuro-oncologist (specifically an oncologist for brain and spinal tumors), less than 24 hours after finding out that our child had massive hydrocephalus and a huge brain tumor, when my husband and I were nearly incoherent with grief and fear and our 6 year old was hungry and crabby…our doctor spent the first 10 minutes of our first meeting chatting with G. She instantly put her at ease, laughed at G’s silliness, hugged her….


We knew within 30 seconds that we had found the right person to save our child.

Over the years we have had some really horrific times and some really happy times, and our doctor has never given up on our child. She laughs with us, tells it to us straight, gives us all the time and information we need. Whenever I’ve asked a difficult question, she answers it like a walking encyclopedia.


I love the power of walking encyclopedia-ness. I love knowing that mighty lady is my daughter’s super hero.

And you know, we are not like the lucky one in a million to get our Dr. B. (although I am so grateful, and do think we are lucky).  Most of our friends in this community have similar stories about doctors doing everything possible to save THEIR children. Adult friends with cancer have similar relationships with THEIR doctors.

This is a tough job. During one brutal season in our journey several years ago, I said to our doctor via e-mail that I was so sorry she had to give us such horrible news, even as we were crushed I felt so bad for her…I knew, through observation, that we were not her only patients to end up ashen-faced and silent in the waiting room that day…and that must be the worst part of her job. And she replied, “you put a finger on my woes”…

Taking care of critically ill children and adults is a vocation. Using inefficient treatments is frustrating for these doctors, we have seen that time and time again. Our doctor suffered with us when G’s last scan was such a train wreck. She WANTED it to work for us, which is a massive DUH, but really. It apparently needs to be said! While the clinical trial G did was a total bust for her, I don’t regret doing it. We needed to try and push research forward and hope that this would be the magic bullet for G’s tumors. We so appreciate that our doctor talked us through our options, shared her insights both about the meds and about our G, how she would tolerate more frequent hospital trips, etc.

She wants G to beat the tumors. She also wants her to be happy.

Yesterday, as we were leaving the exam area to march over to the day hospital for chemo, I stopped by the door where our doc was filling out our appointment forms. “So it’s ok, right, that she’s doing so well? “ (I get an illogical fear that if my daughter tolerates chemo well it’s not working…granted, the last chemo whomped her and then failed, so I know this is an illogical fear, but it’s hard to shake).

Our doc turned to me and smiled, “She’s wonderful. This time it will be different.”

After 8 years, I know Dr. B doesn’t just humor me. She knows I am neurotic and anxiety ridden, and she and I think alike on a lot of things related to my G, which I so appreciate. I am still a wreck about our next scan. I told Dr. B I would be full of sunshine and optimism and sparkly rainbows, (sarcasm is my language of choice for clinic), but I did feel better. It was her love for my kid that made me feel good. Her hope gave me hope, and that is the best medicine for any of this, really.

We’ll see what this combo brings. I hope it brings stability, oh, how I hope that. But either way, I know we have a mighty and loving doctor on our side who is not part of some pharmaceutical conspiracy or in this awful line of work for the money. She, and so many other neuro-oncologists and oncologists like her have a vocation to try and save lives.

So the next time someone makes some big statement about oncologists as bad guys, think about how this could truly hurt people just starting their fight against cancer or tumors or any kind of monster illness. This is a battle, and assembling a great team is key to hopefully beating the beast…

Lord knows, it is a battle…

But that will be another post.

In a Bind(er)

So I have two confessions to make. One, I am addicted to office supplies. I really DO sing “It’s the Most Wonderful Time of the Year!” when Staples has their back to school sale. Having a hoard of loose leaf paper and report covers makes me feel all warm and fuzzy. Colorful paper clips, thick notebooks, binders in all sizes and colors of the rainbow, post-its…oh, the post-its…swoon!

Yes, I have a problem.

Secondly: change of anything related to my daughter’s medical routine fills me with superstitious anxiety. My daughter’s caringbridge page has the same sunshiney motif along the old school margin that it did the first day I posted. I just can’t change it. I know I should upgrade to the new format, it’s so high tech, but I can’t.

I bring the JICB (Just In Case Bag) to every single hospital visit. Going to check eyeballs? Throw the bag in the car. Scan days? Yup. Regular visits? YUP. And you know, back in December when they would not let us leave ye olde CHOP because ye olde shunt was clogged, I felt a smug satisfaction as I put on my hospital worthy pjs (ie yoga pants and a sweatshirt) and brushed my teeth, ready for my quality time with the vinyl extend-a-chair. Yeah, unexpected medical smite? Bite me! I didn’t change from MY routine. Hah!

And on every visit I lug G’s Binder O’ Medical Whatnot.

This binder was given to us in a giant Gift Bag of Yikes on our first day in the oncology inpatient unit in 2004. The binder (with handy divisions for lab results, medical expenses, current meds, and doc business cards) was plain white, and came with the Guide to Childhood Brain and Spinal Cord Tumors, a Willow Tree Angel, a journal that said “Hope” in inspirational leaning script, and probably other tchotchke I’ve since forgotten. I’m sure there was a stuffed animal for G, the 3nd of about 27,000 we’ve accrued over the years. The first was the Care Bear promised for being brave during the MRI. The second was this butt-ugly hedgehog that the child life specialist gave her during our first clinic wait. Yes, we still have it.

ANYWAY, I rifled through that bag while G slept off shunt surgery. I went through each item, nearly incoherent with grief and lack of food (I kind of didn’t eat for the first 10 days after diagnosis). I wrote all sorts of despairing things in the journal, and started trying to put questions in the binder, things like “will she lose her hair” and “will she be able to have children?” Nice questions to ask about one’s 6 year old.

When we got home, I went and got scrapbook paper and stickers and a stamp, and made a pink cover for the binder that said “Genna”. Somehow, making it cute made its purpose less menacing. How could something so pink and cutesy be a chronicle of woe?

There are e-mails in there from our first days. Scan reports from G’s one horrible biopsy time. The list of “A’s Time”, the things we would do for my son, our 9 year old left in Jersey to cope with the complete upheaval of his life. The business card holder is filled, and a few medical abstracts are stuffed in the pockets. I finally had to start taking out lab results and chemo facts each time G failed a protocol, the binder was getting too heavy to carry. Those things now FILL a crate in my closet, next to the old cassette tapes, my stamp collection from middle school, and religious art relatives gave us (and which Dave feels too guilty to donate to a yard sale). Heck, G’s on her second or third chart at the hospital, they start a new file when the first one gets to about 4 inches thick. My early notes are still in the binder, even though now I hardly write anything when we’re with the doctor. I try to sum things up when we leave, but that’s usually on a scrap of paper or a post-it. Smaller papers are easier to balance on my lap. Post-its are God’s gift to the paper obsessed.

yeah, good times from days of yore. sigh.

Anyway, I ALWAYS carry the binder. I can’t leave it at home. One time I moved it out of my normal bag, and I couldn’t find it, and I almost had a panic attack about not bringing it. It is battered, and smudged around the edges, and generally ignored when we are AT Club CHOPARONI. But it comes with us.

So two weeks ago we start up chemo #5. Our nurse, C, has been with us since the famous Freakish Port Break of 2005 (when the port broke and floated into G’s pulmonary artery. Good times). She said, “Hey, did you get a binder?”

So I answered, why yes, I got a binder back in ’04, and HERE IT IS, as I dug into my massive bag of complete over-preparation (Tide pen? Got it! Cell phone? Got it! Sewing project as yet unstarted? Got it! Tissues? Got ‘em! Inflatable raft? Ok, maybe not that.  Large print word find for G in case we get stuck a long time? Got it! And yes, one pocket is reserved for Cadbury mini-eggs). Yes, I have a binder in here too!

But no, apparently CHOP got some kind of massive grant, and there are Sparkly New Binders with a cloth cover and a carry strap and all sorts of CHOP specific info and fabulosity galore. And C was going to get one for Me.

I could not say no, this was like the Mother of All Office Supplies, and I could pick the color (duh, Pink for G) and it can be lugged outside of my increasingly overloaded scrapbooking bag that I bought simply to be a hospital bag back during stable days.

And Lo, C brought me the glorified Trapper Keeper binder thing with the handy carrying strap and the CHOP logo stamped on the front, and I was well pleased.

But…

Sigh.

I look at the old binder, and think of all it has come through with us. I remember making that cover, defiantly fighting back tears of despair as I stuck those cute letter stickers on the front. That binder held so much of our early journey. Will the fancy new binder even work as well?

I fully acknowledge the patheticness of this.

A lot of the cancer info in it I don’t need. Been there, done that. I have to create a section for labs (after Transfusionfest ’06 I am meticulous about tracking labs). I need to decide then will I be carrying too much if I lug the new pink binder AND my massive many-pocketed scrapbooking-turned-hospital-bag? I need the bag, it’s covered with pins…

   *My Wall of Courage pins, one for my 8 year survivor and one for my 4 year survivor, and one that states “I’m Wearing Gray for My Daughter”.

*My Yetifunk pins, commemorating my brother’s ultra-marathoning for a cure for NF.

*A St. Baldrick’s pin for my friends, the 46 Mommas

*A Friends of Jaclyn pin—for my G, adopted by RU LAX.

* A 52 bELieve pin for Eric LeGrand --injured RU football player, ultimate Hopemeister.

*Sometimes a bee pin for the Beez Foundation (a pediatric brain tumor group), but that pin often falls off.

* A festive, rainbow colored “Brain Tumors Suck!” pin, just because.

* And finally, a gray ribbon “No One Fights Alone”

Maybe I can stick pins on the binder, but I’m not sure.

I am having a moment of self-realization as I type… I am a hoarder of motivational pins too, apparently...

So I’m in a bind. Which addiction will win out? The snazzy binder? The irrational anxiety about changing up my old binder?

Maybe chemo #5 merits a new binder. God knows the festive new hot pink insert folder for Sorafenib didn’t do SQUAT in the old binder…even the special addition folder for the daily dosing diary, fully decorated with special GIRAFFE STICKERS DID NOT DO SQUAT. Hmph!

ok, so the hearts all fell off and THEN we added giraffes. Meh. The desserts stayed.
And this is one of the silly, odd, exasperating side effects of brain tumor in THIS mom’s brain…the complete inability to make a simple decision about which office supply should be the thing I have panic attacks about leaving at home. But really, I guess that’s better than panicking about the info INSIDE the binder, right?

The new one did come with extra little sticky divider things that I can write on…ooooh…

oooh, extra sticky divider thingies...
Either way, I need to figure it out before Dose Dos, tomorrow. Hm.
Maybe I can write pros and cons out on some post-its…

To the creators of "Warrior Eli", a few things you should know

The story of Warrior Eli went viral on Mother's Day--telling of a mother of 11 who died in an accident just before giving birth...one of her children is a relapsed cancer survivor named Eli.  By today, this story was revealed to be a hoax. 


To the creators of “Warrior Eli”, whoever you may be,


I don’t know why you thought it would be fun to create an elaborate myth about a child with cancer. Maybe you were inspired by Lifetime movies or Grey’s Anatomy or some sort of dramatic fiction that makes childhood cancer seem c’est tragique. Maybe you thought it would be funny to see if you could get your sad story about a young mother of 11 dying just before giving birth, while one of her young brood battled leukemia, to go viral. You don’t seem to have wanted money, since you asked for donations to go to Alex’s Lemonade Stand, a legit charity for kids who really do have cancer.

Honestly, I don’t really give a crap about why you did this.

And honestly, this isn’t the first time I’ve witnessed this. I, too, have believed a liar in the past, sent gifts to a phantom child. I learned from that experience.

Now it’s your turn to learn a few things.

One, most people are good, deep down. Parents of children struck with catastrophic illness can be some of the kindest, most generous people on the planet. This isn’t to say we need to start handing out halos –people are people, no matter how smote-- but folks who have walked through fire are the first ones to hand out buckets of water, if you know what I mean. When they hear that someone is facing the same tragedy they have faced, the FIRST instinct is to help, to assure the new family that they are not alone. They hurt FOR each other, because they so intimately know that pain that this kind of diagnosis brings. Even though it hurts to engage with other families sometimes BECAUSE of this shared pain, these parents do that.

So when you lied over time about “Warrior Eli”, you hurt real warrior parents. You should know that. You took the grace that these parents have to give, and you made a mockery of it.

Shame on you.

Second, your lies, your desperate appeals for the sympathy and concern of strangers hurt the real warriors, the children truly battling for their lives.

Last week we spent about 5 hours in the Alex Scott Day Hospital, named for Alex of Lemonade Stand fame, named for the money raised by the lemonade stands that funded this amazing facility. I sat there, watching poison drip into my child, and I had trouble believing the evidence of my senses. Yes, we were in the hospital. Yes, G was getting her port accessed (which means a ¾” needle stuck in her chest, not sure your “research” for “Warrior Eli” covered that). Yes, nurses double double checked G’s ID to make sure she was getting the RIGHT poisonous cocktail. Yes, my warrior smiled and gave me a thumbs up even though she was so scared, so scared about what the chemo would do.

The entire afternoon was surreal. A friend came to visit us, and I am not going to lie, I am always happy now, after knowing about people like you, people who lie about their children being sick, I am happy when someone sees us in clinic, sees my child like this. If I can’t even believe this is happening to us, why should other people?

You hurt the credibility of real families battling. You made us doubt when we should be feeling compassion.

Shame on you.

As a side note about Alex’s Lemonade Stand, who you dragged along , maybe to give your lies more credibility?: Alex was a true warrior. Because of her, kids like MY kid have a better place to receive treatment. When Alex was battling, the day hospital was a large room with a ring of chairs around a nurses’ station. Now children can have some privacy, if they want. They have working tvs and video games, there’s a playroom and a little kitchen where they can get a healthy bagged lunch while they are getting treated. Alex didn’t live to see this. You insult Alex and her work and the legacy her family has worked so hard to foster.

SHAME ON YOU.

Finally, you need to know that childhood cancer isn’t a means to getting noticed, or a way to look noble and cool. It’s a battle for life. It’s not pretend, or a play, or something you can treat lightly. You want to look noble and cool? Go HELP kids with cancer. Use your creative energy for something GOOD. You used pain and suffering of children for your own satisfaction.
Shame on you.

I don’t think there will really be any tangible repercussions for what you did. You simply lied, and people believed you. You didn’t get money, you didn’t ask for anything, from what I can tell. You simply lied, and stole the emotional resources and compassion of people that could be better used for REAL catastrophe. I do hope that maybe some corner of your mind still possesses a shred of decency, and that maybe, just maybe you’ll take some time and volunteer for Alex’s Lemonade Stand, or in a children’s oncology ward, or with Team In Training in honor of “Warrior Eli’s” leukemia. Maybe you can try and learn just a little bit about the deep truths discovered when you spend time with a child fighting for their life.

If not, then shame on you.