Silly Ramblings from a Crazy Momma (and what comes next for Kate)

The last four months have been a whirlwind of activity, celebration, firsts and fun. It all started in late August with Kate’s first trip to the beach for a long weekend with family. We returned home to her having her last IV chemo followed (days later) by port removal surgery. The next week, she started school for the first time and shortly thereafter celebrated her last chemo on treatment. Our families and friends flocked in to celebrate with a big No More Chemo party and we barely had time to catch our breath from that before we shipped off for the week of a lifetime at Disney World for Kate’s Make-A-Wish. We returned home to Halloween, Thanksgiving preparations and celebrations and school festivities surrounding the holidays. December has been nothing short of perfection with weekend vacations, play dates, school parties, Christmas lights, Santa visits and family. The last four months have also brought excellent blood counts, improving vision and increased strength.

I have been truly allowing myself to enjoy these last four months without the “what next” creeping up too much. I know myself too well and KNEW that right after Christmas, though, that would all come to a screeching halt. We’ve been teasing for months “man, 2016 is going to be such a let down compared to the way we’ve ended 2015!” Oh MAN…truer words have never been spoken. It’s only 12/26 and I’m already feeling the blues! It’s not just the thought of taking down the beautiful decorations or finding a place for all this new STUFF. It’s not just the idea that we need to find a way to entertain Kate for another whole week off from school or that she’s SILL coughing & snotty four weeks later.

It’s all of the daunting tasks that lie ahead that I’ve been putting off for these four months. “Let’s just let her enjoy and celebrate…we’ll worry about that in 2016.” She’s stronger but her feet still need work and she’s got to get back to see her Physical Therapist which may very well result in foot braces. I’ve got to get her to the dentist – what with her having lost 2 teeth this month, her head is going to be full of permanent teeth before she’s ever sat in a dentist chair. (To say I’m dreading this visit is about as under of an understatement as you can make.) More patching and follow up with eye doctors to try to avoid eye surgery are on the map. She needs work on strengthening her hands and things like holding a pencil correctly and holding scissors so she can cut. She can’t quite yet make it through the night without a diaper – but we need to start to train her to do just that. And the biggest and baddest of all…her eating habits and lack of variety, nutrition and willingness to try new things.

During treatment, we did ANYthing to get her to eat. Milkshakes for breakfast, lunch and dinner? Sure. Gooey, cheesy macaroni & cheese after every chemo? Absolutely. We named the consolidation phase the “I can’t believe she didn’t need a feeding tube” phase and meant that with all sincerity. After treatment ended, we just waited…waited to see if her damaged taste buds would return…waited to see how much of her diet was circumstantial and how much was learned behavior. I knew it was going to be hard to explain (after nearly 2 years) why milkshakes were a sometimes food and not an every day food to a very strong-willed 4.5 year old, but I honestly (and dumbly) believed things would just naturally improve. They have not. If she tries a new food, it’s something like a marshmallow or Milky Way. Dinner rolls and hot chocolate. I KNOW this starts with me and needs to be 1,000% reinforced by me each and every day. I’m SO worried about her going hungry – so concerned she will develop some nasty relationship with food – that I have buried my head in the sand for far, far too long. She likes fruit…some fruit. She likes yogurt and smoothies. That’s about where the healthy list ends. If it’s junk, she loves it (duh.) She hasn’t eaten chicken since July and hasn’t EVER eaten any other type of meat. She will randomly eat a green bean or a bite of sweet potatoes…once every 4 or 5 months. I’m not certain if she needs intervention by a feeding specialist or not, but I’m starting to believe so because there is no way I posses the patience required to get her through this hump. Yet, it was never my idea in life to cook a separate dinner for my kid every night that consisted of 20 things. So…there’s that.

I have no idea how to start and even though I am the queen of a project; this is a project I just don’t want to tackle. Among about 10 others that have little to nothing to do with Kate.

So, say some prayers for us in 2016…I have big goals for the winter months and need all the encouragement I can get. Happy New Year – to health, happiness and living a full life!

Posted in Uncategorized | Leave a comment

A frustrating “state of the union”

Sigh. We are so close. SO CLOSE to the end. We have less than 7 months left until Kate’s end of treatment date and that feels so damn good. It’s so close we can see it, count it down and very nearly feel it in our grasp. But it is too damn far off to feel REAL. It isn’t close ENOUGH.

We’ve been in maintenance now for 9 months and it has been a long ass ride. No, it isn’t anything like front-line but it is still a really long and arduous process and there are still so many things that just ARE. Things we deal with that just ARE. No changing them, no getting better…just part of our life for another 7 months. Maybe longer. Who knows what post-treatment will be like for us. We haven’t even yet discussed late effects of chemo, what this might have done to her psychologically…ugh, I can’t even go there.

Kate is BORED. She is a really bright an funny little girl. She is more ready for school than any other child I have ever encountered and yet…we have to wait another 7 months. (No we don’t HAVE to, but we made a decision to keep her out of school during treatment to avoid any unnecessary exposure to illness.) We have tried music classes, gymnastics and the like. She’s just not interested. She doesn’t really know how to interact with kids that well; she is starved for peer interaction. She speaks like an adult because she’s only ever around them. She starts ballet in a few weeks and I’m trying to remain hopeful. I just long for spring & summer when she can get OUT and ABOUT and say so long to this frigid weather, too.

Vincristine continues to wreak havoc on her little body with neuropathy; she still has some trouble with walking and balance and needs a lot of work on strength. But it also tears up her poor tummy – all but halting her already challenged “system.” Vincristine is very effective in causing constipation and boy does it ever. We have her on heaps of medication to counteract the side effect that works sometimes…other times not. So it hurts her to go. And that scares her. Which results in us effectively having to re-potty train her every three weeks after she gets her cycle dose.

Steroids are still a goddamned pain in the ass. There is nothing more I can say that I haven’t already. Some weeks are better than others, but we are always on eggshells, we are always battling tummy pain and always wondering what little infraction will set off her roid rage.

Weekly clinic visits are draining every hour of vacation & sick time I have. I have a beyond understanding employer and a fantastic team who rallies behind me. But still. It’ll be late 2015 before I can take a vacation day that does NOT involve sitting in a chemo chair holding my child down while she looks at me and pleads with her big blue eyes. Relaxing, no?

Speaking of those weekly clinic visits…the week 1 access & chemo (each take about 5 minutes total) has become an all out war. Kicking, screaming, gagging…she is just DONE with all of this and we still have 9 more cycles to go. The finger pokes? Yah, those aren’t any better ether. Nothing is getting easier, it just IS.

We are fine. We are all “fine,” but we are just really, really tired. Really, really OVER THIS. O.V.E.R. T.H.I.S.

Katie Cutie with her Gang

Katie Cutie with her Gang

Posted in Uncategorized | Leave a comment

#12

We’ve been radio silent over here lately…busy living life and enjoying the holidays. I’m interrupting this silence to pay a special tribute to a personal hero of mine…the MVP #12. Beautiful Mathias.

There are many perfectly written posts, Facebook messages and tributes being made to this remarkable young man, who left this world tragically too soon this past Sunday. There are hundreds of great things to say about him and every one of them is true. This 13 year old changed me…changed how I wanted to live. Made me want to be a better person and citizen of this brutifal life. He was special ya’ll. He was put on this earth for greatness.

But what I want to talk about…what I will remember…and what I will call upon when I need strength I cannot find in my own self…is his smile. Innocent, slightly mischievous and would light up a room brighter than the tallest Christmas tree.

But because of childhood cancer, that smile will only remain in our hearts and in our memories now. The world will miss out on that smile when he would’ve celebrated making the varsity soccer team…as a freshman. When he graduated high school and got accepted to his first choice college. When he & his brother celebrated his bachelor party. When his bride appeared at the end of the aisle. When his children were born. The loss cuts like a knife and hurts at the very deepest part.

I’ve read so many comments on the family’s page that talk about how tragic it is that Mathias never grew to become the man we all knew would change the world. But in 13 short years…he did just that. He changed our world and he made it a better place for everyone who knew him. See…his life of purpose wasn’t just about him. It was about my life. Kate’s life. The life of the kids he knew, loved and lost. The community of children with pediatric cancer. His dream was to make a difference and to make people AWARE and to bring better funding for research and new treatments so that kids like his friends, and for kids like HIM to go on to live richly-deserved, full lives.

I’m asking you, as a follower of Kate’s Krew, to honor our hero Mathias in any way you see fit this season. Celebrate his remarkable life with a random act of kindness. Maybe post this to your Facebook page to bring awareness to pediatric cancer…it is NOT rare and our babies are DYING from it at a completely unacceptable rate. Visit http://www.thetruth365.org/ for more information on how YOU can make a difference. Register to have a Childhood Cancer Awareness license plate if you live in the state of Virginia. Or, make a donation in his name to a childhood cancer organization. Most importantly, offer your prayers for Mathias’ family and all of those who loved him.

Mathias, there will never be another like you. Thank you for being exactly you. EXACTLY. YOU.

Posted in Uncategorized | Leave a comment

The Countdown

I cannot believe we are here. (No, really…I cannot believe it.)  Today, we are celebrating the ONE YEAR anniversary of Kate’s remission. (!!)  It also begins the one year countdown until the end of treatment. END OF TREATMENT, PEOPLE! (I hear Dr. D groaning at me…she doesn’t like for me to get ahead of myself.) But still, how could we NOT celebrate this day???

Kate’s treatment protocol began with a 32 day cycle called the induction phase (also known as “might as well rip your heart out and eat it just for pleasure” phase.) At the end of that 32 days, they re-tested her bone marrow to see how many leukemia cells was left. Doctors were looking for less than 5% visible cells. Kate’s revealed that she had ZERO. Induction did exactly as it was intended…it forced her into remission and she would spend the next 2 years fighting to remain there. Doctors told us on September 16th of last year that we had begun an unofficial countdown of two years. And here we are…with one year left.

Nothing changes…nothing decreases the amount of chemo she’ll get overall. In fact, she’s at 150% of the dose for both 6mp and methotrexate (she handles chemo well so they push her as hard as her body will tolerate.) At this point in time,  however, she is at the max dose her protocol will allow, so unless she grows several inches and many pounds in a year, we don’t expect many chemo bumps. The only thing that would change this next year is any illness or infection that causes her a chemo delay (so pretty please, NO to that, mmkay?)

Here’s what our countdown breaks down to:

12 months (celebrated with a decorated paper chain that she’ll get to tear off each month!)

17 cycles with 17 more port accesses for doses of Vincristine

52 more doses of Methotrexate (35 will be thigh shots; 17 will be through her port)

35 finger poke CBCs (our clinic staff’s ears are happy to hear this)

170 more doses of Dexamethasone (this is her steroid; broken out by 2 doses a day for 5 days for 17 more cycles)

244 more doses of 6mp (daily for 14 days for 17 more cycles PLUS the 6 days left of this current cycle)

3 more spinal taps

1 more (possible) bone marrow biopsy

The next year will be very different from the last year where the chemo and accesses and nastiness was just endless. And breaking down these numbers feels much more manageable to me than it’s ever felt before. (Remind me I said that in March.)

So, September 16, 2015….we’re comin’ for you! Katie, we love you so much. We are SO proud of you. I just cannot say it enough.

Kate recovering in the hospital after her bone marrow biopsy confirming that she was in remission, September 16, 2013.

Kate recovering in the hospital after her bone marrow biopsy confirming that she was in remission, September 16, 2013.

 

Posted in Uncategorized | Leave a comment

Golden

gold-ribbon-childhood-cancer

I told my mom yesterday that a blog post was forming. That I couldn’t concentrate because so many thoughts were spinning around in my head…I just needed to WRITE. But I can’t. I have nothing to put down in a blog that conveys the profound sadness I feel over losing yet another beautiful young soul to this terrible disease called cancer.

There are some people…in this case, children…who you meet that you just think “oh! They’re the one who will defy odds! She will be the one who will live beyond doctors’ wildest expectations! He will be the first one cured!” These kids, wise beyond their years, steal your heart with their pleas of more funding, better research…a cure. But the thing that makes it even more painful is that they’re not just doing it for themselves. They’re doing it for the other kids just like them, whose diagnosis might NOT be terminal from day one. Maybe, just maybe, their voices will be heard and they will be the ones who make it so that YOUR child doesn’t have to suffer their same fate.

Today is September 1st and it’s the first day of childhood cancer awareness month. Today I will mourn the passing of another beautiful child gone too soon, who is now dancing around the golden heavens with her other friends…also taken too soon. Children should never make their way to heaven at this age and they CERTAINLY should not be met by other friends of the same age. This is why we need more funding, better research and a CURE.

Nature’s first green is gold,                                                                                                                 Her hardest hue to hold.                                                                                                                     Her early leaf’s a flower;                                                                                                                     But only so an hour.                                                                                                                             Then leaf subsides to leaf .                                                                                                                 So Eden sank to grief,                                                                                                                           So dawn goes down to day.                                                                                                                 Nothing gold can stay.

~Robert Frost

Posted in Uncategorized | Leave a comment

Twelve

Dear Kate,

There are so many raw emotions coursing through me as I sit to write this but it feels nearly impossible to convey what is in my heart. I could tell you all about the memories of this day…a year ago that you were diagnosed. When I think back on those first hours, days and weeks, it would be easy to recall the crushing sadness we felt and the all-consuming fear. Honestly, I’m just coming around to where those feelings don’t haunt me every day. But the real truth is, the overwhelming emotion that comes to mind from the last year…is love. Love from every corner of our world. So, Kate, on this first anniversary of your diagnosis, I will write you a story like one of your favorite books, What is Love Biscuit?

What is love, Kate? Love is the dozens of families who took time away from theirs to feed ours in those first days in the hospital (and long, long after.) The first two families to arrive were girlfriends from high school I hadn’t seen in nearly 20 years. One made guacamole that made your Grandma smile for the first time in days. (Thank you, Meredith!) One made cookies..for the nurses!!! (Thank you, Megan!) And one always, always brought a bone or treat for our beloved woofer. (Thank you, Michelle!) I will never, ever forget what it felt like to be cared for so warmly by something so simple as meal.

What is love, Kate? Love is the group of friends and family who overwhelmed us with kindnesses; all for the love of a little girl and her heartbroken parents. They started coming this very night a year ago and they haven’t stopped since. Entertainment, comfort items, blankets, hats & hair bows, cards, gifts, drawings, messages, prayer groups…you name it. One family sent the reusable sticker pad that kick-started your love of dinosaurs. (Thank you, Tylers!) One sent an elephant Minky blanket that you love to snuggle under when you don’t feel well even now. (Thank you, Neimans!) The mom’s group I’m a part of sent toys, gifts and handmade cards from the babies to decorate the hospital room along with an iPad (Thank you, mommas…you know who you are!) Your Aunt Jamie’s neighbor designed, printed and donated ALL of the Kate’s Krew t-shirts so we could sell them as a fundraiser. (Thank you Julie!) Co-workers and friends formed fundraisers, joined walk teams and reached out within the pediatric cancer community…all in your name. Love like this is a force to be reckoned with and has left the impression on my heart that dulls the the pain of the last 12 months.

This is Love. Every card we received the first month, covering our king size bed.

This is Love. Every card we received the first month, covering our king size bed.

What is love, Kate? Love is the host of strangers who learned who we were from the common thread that connected us…a child with cancer. These people became our lifeline, our beacons of hope and our friends. They are the family of nurses, doctors and other patients we got to know at the clinic who we formed a bond with that no other can quite compare. Long after treatment ends we will be connected…Maeve, Ava, Mark, Trevor, Vincent, Ben, Tyler, Caleb, Tara…the list goes on and on and on.

What is love, Kate? Love is your family. Your Aunt Jamie who dropped everything to be by your side and was willing to do the hard jobs I couldn’t. Your Grandparents, who spent as much time with you in the hospital as we did and who have not stopped doing, fetching or helping since. Your extended family, who spent countless hours worrying, researching, caring and loving. Your mommy & daddy whose love for you and for each other has grown beyond measure.

What is love, Kate? Love…my darling girl…is you. I am so proud of you and I love you beyond the moon, beyond the stars and beyond the heavens.

Today, I celebrate the beautiful girl I call my daughter with this look back at the last year of her life. A year she taught us all the meaning of what it truly is to be brave. (The music is “Us Against the World” by Coldplay from Mylo Xyloto.)

My cup runneth over,

Mommy

Posted in Uncategorized | Leave a comment

Eleven

Dear Kate,

I found some much needed inspiration today on this 11th anniversary of your diagnosis. I know you’re tired, baby. I know in your sweet three year old mind, you think life will always be like this. I promise you, sweetheart, it will not.

10245463_10152228308940642_4902570194143181250_n

Don’t get used to those shots and medicines and scary things, baby, because we are almost halfway done.

I don’t have much by the way of inspired wisdom, but I love you and the pride I have in you is utterly immeasurable.

My cup runnerh over Kate. Over and over and over.
Mommy

Posted in Uncategorized | Leave a comment

What Remains

Maybe it’s the stinkin’ hot weather and the wet bathing suits hanging in our mud room from Kate playing in her little inflatable pool. Maybe it’s all the beautiful babies in my mom’s group turning one year older and the memory of all of their parties this time last year. Perhaps it’s the visual reminder of the calendar pages flipping by inching us closer and closer to August. These days I’m feeling overwhelmed by sentimentality of…it all.

I’ve said an awful lot of “this time last year…” and “at this point last summer…” lately and it makes me realize our lives are always going to be divided in two. Before August 15th and, well, everything after. Before cancer and after.

Our whole lives have changed. Our family and friendships have changed. Certainly priorities and time management have changed, but what I wasn’t prepared for was all of the little things that remain.

There is a box of purple latex gloves that I brought home with me from the hospital to change “chemo diapers” that still sit on her changing table. The cabinet where I keep all of her dishes & sippy cups still has all of the disposable take ‘n toss cups they gave us in the hospital. There is still a haphazardly packed bin of snacks, toiletries and activities in the pantry with non-perishable items that we had packed up “just in case” we had to make an unexpected overnight trip to the hospital. Nearly 11 months ago, the day we returned home, I stocked a polka dot thirty-one tote with all of Kate’s medication and set it on the kitchen counter. It is still in that very same (exact!) spot. Still sitting on my dresser, in the very same place, is the lock of hair we lovingly snipped off and tied with a hot pink zebra ribbon when it started falling out faster than we could keep up with.

As soon as summer ended last year, I couldn’t get rid of the clothes and hospital memories fast enough. Clothes, pj’s, even toys…I still get a little nauseated every time Kate asks me to read one of Karma Wilson’s bear books. But these other things? These things remain as a constant reminder of what will soon be “a year ago.”

I’m overwhelmed by the enormity of what has happened and yet…some things still just remain.

 

Posted in Uncategorized | Leave a comment

What’s Next

As a really great weekend winds down, I’m asking for your good thoughts & prayers for tomorrow’s clinic visit. We begin cycle 4 with Kate’s usual every-three-week port access, but she’ll also be getting something new. (I am NOT amused.)

I thought the only real way to know Kate’s risk of infection was through her ANC levels. I know those things back and freaking forward. I can quote them like my social security number and frequently have to. Lately, they’ve been darn good (she’s also been getting chemo bumps weekly through maintenance because they’re just slightly higher than as good as they want them. Make sense? No? Thankfully it does to me.)

There’s a little something else they test called her IGG levels. Hers must have always been good because I didn’t know about the test. This is yet another way to see if she’s at risk for that pesky cold, a weird infection or all the other CRAP our immunosupressed kids are prone to. Well, guess what. Lo and behold, last week her numbers were really low.

Because she’s got two play dates and three birthday parties in the next 6 weeks (WOO HOO for that!!) and she’s going to be around lots of other little ones, we’re giving her a bump in those IGG levels to give her a good, fighting chance to fend off anything that may come her way. Tomorrow, she’s getting IVIG. Intravenous immunoglobulin.

You can read more about it here:

http://en.wikipedia.org/wiki/Intravenous_immunoglobulin

Kate hasn’t had allergic reactions to blood or platelets, so I’m hopeful she’ll be free of reactions to this. I’m scared crapless every time they introduce something else that’s new and known to cause allergic reactions. (Every day for like 30 days in the beginning it was like “oh this could make her turn hot pink and her face will fall off, but if that happens, we’ll just stop the infusion and give her Benadryl.”) No wonder I had to borrow my sister’s Xanax during induction…but I digress.

I told Kate’s doctor and nurses how I thought I knew everything that could happen during maintenance and new stuff was not on my list of approved activity. Nurse S gave me a knowing “I know why you’re freaking out, but she’ll be ok” look and nod last Monday so…S…I’m counting on that.

Please say a little prayer for us. Okay four. 1) That she handles her cream & accessing well and doesn’t give me a black eye 2) that she handles her chemo well and doesn’t feel crummy days later like she did last week 3) that she handles her IVIG well and doesn’t have any reactions and 4) that this steroid pulse is a continued improvement. Girlfriend has a play date to get to on Wednesday and I do NOT want steroids to keep her from it. (Or a crummy tummy for that matter.)

Posted in Uncategorized | Leave a comment

Ten

This month’s post is a tough one to write. I’m not entirely sure why, but I am attributing it to “too many dangling carrots.” Too many things are so close…and yet so, so far and that leaves me feeling very angst-y.

Maintenance is the phase that you pray for…after months and months of grueling front line treatment and, once it’s upon you, it’s not the instant “whew…this is so much easier” you hope for.

She has just enough hair to not be obviously bald…but not enough to really brush or do. She has just enough of an appetite improvement to take her off the meds in hopes it’ll hold…then SYKE! Just kidding. We are told she’s just healthy enough to start taking her out and about “normally” then BAM…103 degree fever. (In all fairness…that was not leukemia. It would have happened anyway.) We are just in this long enough to know what to expect with her chemo drugs because no NEW meds are introduced and then…oh no. You think you have this figured out? Ha! Wrong again! Let’s see what you think about the new limping side effect we’ll throw in.

If anything…I might even be MORE afraid right now than I have been. Maintenance is…well…all there is left. This is it. But its 16 more months of “it” so we have to get a wiggle on living without fear again. Except fear is crippling me. I haven’t yet determined what I’m scared of but after a lot of soul searching I think I’m afraid of never, ever feeling normal and carefree again. I don’t think I’ll ever feel comfortable leaving Kate overnight…ever. I worry I won’t ever trust anyone but Grandma to babysit. I’m terrified of taking my eye off the prize and allowing a selfish moment to creep in. And I’m scared I will always be…scared.

Kate, my love, in this, your 10th month with cancer, we have really stepped out of our comfort zone and mostly, it has paid off. We are now onto finger sticks and shots instead of weekly accessing. We’re working on potty training. We’re considering a big girl bed. We have had a glorious visit with family. We’ve had a friend visit for a short play date. We’ve had a birthday party for you and we even went out to dinner…in a public restaurant! We even took you out in public…twice!…on steroids. This is all very, very big stuff and is how maintenance should be. I’ll refrain from telling you how many of those things I almost canceled due to fear. I’m a daily, hourly work in progress.

As we sit here tonight, on the eve of a new cycle start (a big one with a spinal tap on Tuesday, which always sends me into a tailspin) I promise to always put YOU first above the fear. I can’t wait for your real life to begin because, baby, this isn’t it.

My cup runneth over,

Mommy

Happy Father's Day, Daddy!

Happy Father’s Day, Daddy!

Posted in Uncategorized | Leave a comment