10.20.2013

(Only) Five Years!

This week has been an immense struggle for me personally.  When I realized last weekend that we were coming up on the five-year anniversary of Becca’s original diagnosis, it’s an understatement to say that I felt quite conflicted.  Though the calendar does not lie, my own mind has trouble believing that it has actually ONLY been five years.  People say that time flies when you are having fun, and I guess that explains it, but it still blows my mind.  These past five have surely been the longest five years of my life!  It’s hard to believe that just five years ago, Ethan and I had two “normal” toddlers who had just recently turned two and four, and we were enjoying the typical family fall activities.  We began the day not really even knowing what leukemia was.  Ethan and I both a little too vividly remember that day, and as we discussed it Saturday morning, we were not without tears.

So I began this past week as reminiscent, yearning for simpler, more secure times when I was not in constant fear of a cough, fever, or even a little paleness, and how it could land Becca in the hospital, upending our entire family’s life.  I also mourned the loss of Lily’s childhood (I have grieved for Becca’s lack of childhood throughout this journey).  Beginning at the young age of four, she was forced to grow up way too quickly due to the separation from us, as well as our lives revolving around Becca and her health.  I pined for the typical parenting challenges most families have that can be solved with the advice of friends, family, or a so-called child expert.  Compound those standard parenting challenges with social, developmental, psychological, physical, financial, and emotional issues brought on by a child’s life-threatening illness, and it seems impossible to navigate. 

Some people tell us, “I don’t know how you say ‘no’ to Becca. I would just give her everything she wants.”  Oftentimes we want to indulge her every desire, because life is short and we don’t know how much time we will have with her, because of all the absolute crap she’s had to endure, or for other reasons.  Fortunately, we get to live with the little “monster” we created over the last five years, though.  As a result, we try to choose our battles, and we continually work on helping Becca deal with her frustration, fears, negative self-image, and food issues caused by her illness and treatment, while attempting to do all the normal things that parents do to help their children develop into responsible and capable young adults.  It’s exhausting!    

I received my own packet of teacher school pictures at the end of last week that were taken after school started this year.  Well, there are LOTS of pictures in the packet, so I gave one to Becca and Lily, since they enjoy having photos of the people they love.  After telling me I looked beautiful (LOVE that sweet girl!), Becca got so excited and said, “When I’m in the hospital, I’ll tape this on my bed.”  She also often says, “The next time I have a port,” or, “When I have to stay in the hospital…”  I tried to explain to her that she shouldn’t be inpatient in the hospital anymore, but she doesn’t believe me.  This has been so much a part of her life for as long as she can remember, so why would she believe that life would be any different?!  I still remember the first time around with ALL when Becca was taking lots of yucky medicines at home, and she was tired of it.  She told me that she was done with them, and that she wanted to give them to our younger neighbor to whom we used to give hand-me-down clothes.

Though we are currently in a good place, the ramifications and lasting effects will be life-long.  Chances are, Becca will experience some secondary conditions and side effects from treatment down the road.  We don’t know what they will be or when they will appear, so we try to focus on the present.  That worry is always there, though.   I often wonder, “When am I going to get smacked upside the head with one of these things?”  

Following the grieving of sorts that I have done this week, I have moved toward recognizing the positive outcomes of Becca’s illness that have evolved during the past five years.  I truly do feel that there is a reason for everything, and though I’m still trying to figure out the why of it all, I see how so many good things have come out of our journey so far.  Most of the positive aspects boil down to connections that have been made or cultivated.

The bond that Ethan and I have forged has only grown stronger.  While life-changing events like this oftentimes drive couples apart, it has done the opposite for us.  We have learned that we make a really good team, and in parenting, we have evolved to where we can tag-team to be more effective.  I could not have done this alone, so I am so glad that Ethan has been such a rock, shoulder, and partner throughout this time.    

Despite everything she’s been through, Lily is really a good kid.  She is smart, creative, beautiful, well-adjusted, and has such a good sense of humor.  She gets that from her father, you know.  Even though she bickers with her sister constantly, Lily genuinely loves and cares for Becca, and she has such a good heart.  I love who she is, and this five-year journey has shaped who she is. 

Our family has also met with infinite kindness and support from family members, friends, co-workers, and even complete strangers.  I have frequently wondered how families survive without support systems in the area where they live.  We have been fortunate to have both of our families in town, and the love shown by my Loveland Schools “family” and the girls’ Kings community has been amazing. 

The wonderful nonprofit organizations we have discovered since being diagnosed have opened our eyes to the good being done, too.  The Make-A-Wish Foundation, Give Kids the World Village, CancerFree KIDS, and The Dragonfly Foundation are all near and dear to our hearts.  Each of them in their own way has smoothed out some of the nastier bumps in the road and has provided some joy, comfort, and hope.  CancerFree KIDS and The Dragonfly Foundation, in particular, have helped us to connect with other families experiencing similar challenges. 

Ethan is now pursuing a PhD in the healthcare field.  If Becca would not have gotten sick, I don’t feel this change in life paths would have occurred.  The opportunity was there, the timing was perfect, and Ethan is enjoying being a student for the first time in his life.  He will make a huge difference in the lives of his future patients and their families, with his acquired knowledge, sense of humor, and bedside manner. 

I am astounded at all of the doctors, nurses, therapists, child life specialists, care coordinators, and other support staff at Cincinnati Children’s who we have met over the past five years.  They are amazing people, and I cannot imagine NOT knowing them.  Together with Matthew (our hero who selflessly donated his life-saving bone marrow), they have saved Becca’s life many times, and for that, we are eternally grateful.  

I also now have appreciation for the little things taken for granted before – all of us in the house together, holidays, vacations, family game nights, health, family, and friends.   I try to pause occasionally and soak in the brief moments that bring smiles to my face.  For example, after Becca had woken up and come downstairs a few days ago, I told her I was heading upstairs for a few minutes.  She replied, “C’mere, Mommy,” and proceeded to give me Eskimo and butterfly kisses, as well as “real” kisses, and she refused to let me go.  As I’ve mentioned to many of you, Becca makes us laugh (and sometimes cry) each day.  You never know what she will come out with next, and it’s usually very entertaining.  Just as Becca’s illness has shaped Lily, it has also shaped Becca… and I absolutely love the little person that she has become!

I guess the biggest lesson we have learned from the last five years is that life is so very unpredictable.  You don’t ever know what is going to happen the next day to throw off everything you have planned, so don’t hesitate to tell and show others that they are important to you.  Spend time enjoying the little things rather than always focusing on what you “should” be doing.
So today I am celebrating the fact that it is five years later, and our beautiful Becca is a survivor!  In fact, she is thriving and keeping all of us laughing and crying with her, while bringing us together in a multitude of ways.  Who knows the impact of these connections in the future or what the next five years will hold?  I’m looking forward to finding out…

TK    

9.29.2013

Veni, Vidi... Eaty

Becca and our HERO!

The day we have been waiting for finally arrived!  Yesterday evening, Becca's bone marrow donor Matt and his mother (JoAnne) came to our home to join us for dinner.  It's difficult to describe the emotions we felt, but the ability to personally thank the amazing individual responsible for saving our daughter's life was priceless.  Those of you that know Ethan well realize that his way of showing his admiration for someone is to cook for them.  Well, cook he did!  He "threw down" an incredible six-course meal, complete with wine pairings, with the assistance of our good friend Stefan (also our girls' God-Chef).  Here's a recap...


Seared beef marrow with confit beef heart and a sour cherry compote;
'12 One-Eyed Brute Sparkling Hard Cider

Crab salad, deviled quail eggs, carrot/bell pepper relish, garlic curry aioli;
'12 Dr. L Riesling

 Miso and sake marinated scallop with saute of shiitake mushrooms, wakame seaweed, edamame, with pickled diakon ;
Tyku Junmai Sake

 Seared breast of wild dove with quinoa, smoked bacon, and lingonberries, drizzled with browned chicken foot glace;
'10 Brophy Clark Pinot Noir

Braised lamb, homemade sweet potato tortellini, crisp sweet potato, rosemary-scented jus; 
'09 Passimento Veneto

Pate choux beignets with orange blossom sugar and bitter chocolate cream; 
Gruet Blanc de Noir 

And NO... we don't eat like this every night!  It was a great evening with very special guests, and we were so grateful to be able to celebrate this way.

Though Becca was shy at first, she quickly warmed up when Matt produced a gift of a stuffed zebra ("Stripes," with the nickname "Zeebree") and book.  Later in the evening, it was quite touching to watch Matt and Becca sitting down together on the couch to read the book (see pic at top).  We enjoyed getting to know each other, and Matt and JoAnne seemed to be entertained by the girls as their personalities came out more throughout the evening.

So, some information about Matt... he is a 22-year-old young man finishing up his Masters in biomedical engineering at the University of Louisville.  His family lives in Villa Hills, Kentucky, and Matt was doing a co-op at Cincinnati Children's Hospital (on the 4th floor, actually) during the time that he donated his marrow to Becca last summer.  While we knew by the timing of when we received his marrow that he was pretty close, we had no idea that he was THAT close!  Matt and two of his roommates/fraternity brothers were interviewed about being donors in this video (Matt is the one on the right in the pink shirt) -http://www.courier-journal.com/article/20130707/FEATURES/307070007/Three-University-Louisville-fraternity-brothers-perfect-stem-cell-matches .

All in all, it was a great night, and we were pleased to begin a relationship with this wonderful family.

An update on Becca... she had surgery last Tuesday to have her port removed!  It went well, with very little pain afterward, and now she doesn't need to have a "pokey" in the chest once a month to get labs drawn and the port flushed.  We will now move to once every-other-month visits to the clinic, and they will be able to draw labs through her arm.  Becca is now on NO MEDICATIONS!!!  This is amazing to us, as some kids are on maintenance medications (for varying reasons) long after the bone marrow transplant process.  She is attending first grade (and loves it!), is making friends, and she is starting to do some extracurricular activities.

We will leave you with a photo of the girls that Trisha took this week at Symmes Park...
TK & EK





9.05.2013

Pics and good news!

So I promised you updated pics, so here they are:
 Lily's first day of school (fourth grade)...
 Reds game...
 Becca with bangs...
 Becca in book return at Mommy's library :o)
 Daddy kissing Becca...
Dance class with Webby at TDF...

It's been a great month, and now we know who Becca's donor is!!!!  We got contact info today, and we are so excited!!! Feel like we are going to burst.... It's been an emotional day, and we will share info when it's appropriate....

8.27.2013

School for all!

Okay... a month late, but better late than never! When I last left you, I believe Becca was ready to head to the clinic at the end of July.  They drew TONS of labs, many of which we've never heard, and thankfully, they all came back great.  The immunology studies showed some levels still low, but that was to be expected with all she has been through with the bone marrow transplant.  Today, Ethan took Becca to the day hospital at Children's for IVIG (her IgG level was a tad low last month, and this will give her a boost of immunoglobulin for the beginning of the school year), an EKG, and a check-up with Dr. Absalon. They pre-medicate her with Benadryl whenever she gets IVIG, and unfortunately, it hadn't worn off when they left the hospital today.  When I talked with groggy Becca on the phone, she said, "Mommy, I really want to go to music class, but I'm SO tired and lazy!"  I reassured her that she would have music class next week, but she told me that it was a LONG time away (she LOVES music class and Mrs. Maegly).

Again today, Becca's labs looked terrific!  She's sporting an ANC in the upper 3,000s, which is a great start for a school year filled with bugs and viruses.  Please join me in praying and crossing fingers that she stays healthy and out of the hospital!

We have surgery scheduled for September 24th, when Becca will have her port removed.  Though it is surgery, and we are always nervous when our child is put under anesthesia, we feel it is huge that we are at the point for Becca's port to be able to come out.  This means that she will not have to have it flushed (a needle poked in her chest) monthly!!!  Her labs can be drawn from her arm; still a needle poke, but the needle is so much smaller, and with Emla cream, she might not even feel it.  In addition, she will not need the oral antibiotic she takes three days a week once her port is removed.  It may seem minor, but to have NO MEDICATIONS is a major victory for Becca being just a little over one year out of transplant.  We can also move to clinic visits every other month instead of the monthly visits.  This is a huge plus, since Becca doesn't want to miss school. That new normal is looking better each day...

The best news of the day was this afternoon when Mary (our care coordinator) called.  I thought she was just going to go over Becca's labs with me, but she had word from Becca's donor!  I had asked Mary on the phone if we could try to contact him now that it has been a year, and I had almost come to terms with the fact that maybe he wanted to remain anonymous.  Today she told me that there was actually a message "out there" requesting that we contact him!  It brought tears to my eyes thinking that we might actually be able to talk with or even meet this amazing young man who saved our child's life!  I am beyond excited to thank him!!!  So, we need to fill out a form, then he needs to fill out a form, and then I believe we will be able to get in touch with one another.  I think something fell through the cracks when our BMT care coordinator left on maternity leave and did not return, so I'm glad that we can move forward in making this connection.

Enough about the "medical side" of our lives...  Our family has been eeking every last minute out of the summer.  Ethan and Lily ended up heading back to the UP with Ethan's parents a couple of days after our family returned, but Becca and I stayed so that she could attend summer school for math and I could start working.  We had some fun Mommy/Becca time, but we were QUITE ready for Ethan and Lily to return. Since then, we've all been starting school.  Becca is now in first grade, Lily is in the fourth grade, I am still blessed to work with elementary students in grades K-4, and Ethan is in his second semester at UC (starting in the nursing program).

I will post some pics another night this week, as this getting up early again is wiping me out and I'm ready for bed!
TK

7.07.2013

Now THIS is summer!

Oh, boy... what a difference a year makes!  After asking me how Becca was doing the other day, someone pointed out to me that I really needed to update the blog.  Sorry it's been since the end of May, but as I've said in the past, when you are not getting frequent updates, that is a sign that things are going well.

Unlike every other school kid in America, Becca was really sad for the school year to end and for summer to begin at the end of May.  She was just getting going!  Becca's pretty excited about starting back to school a few weeks before Lily, since she will be attending a math program at school to help her build some math skills she is lacking.  Lily is gladly letting Becca think she is "winning" by getting to go back earlier. :)  Oh, I forgot to mention field day at the end of the school year.  Becca had a blast!  Here are some pictures of her enjoying the different events.  Seeing her so active and happy just makes my heart smile...





We've been keeping pretty busy doing fun things so far this summer, but I have to admit that it was a little nice to feel "bored" (outside the hospital!) at one point last week. We've been to the Kings Island water park many times, gone shopping, taken in the Butterfly Show at Krohn Conservatory, played a ton with friends and neighbors, took a trip to Washington D.C. to visit our nation's capital and spend time with cousins, had sleepovers with "in-town" cousins, attended lots of picnics, and we have just been enjoying the sun, water, and summer itself as much as possible.

What a fantastic long birthday weekend Becca has had! Two family parties and a skating party with friends (as well as LOTS of sweets) have kept her grinning for the last few days straight. I cannot believe she is seven years old! In some ways, I feel like she was just born, but it also seems like the last five years have been really long, and Becca has become a much more "wise" seven-year-old that she should be.  After last summer, I'm just ecstatic to celebrate another one of her birthdays with her.

Okay, I'm just going to lay it out for you... last summer SUCKED!  When I think back to it or look at pictures, I actually get a queasy feeling in my stomach and shivers down my spine. As a result, when people ask me if we are having a good summer, my response every time is, "Oh, yes!  It's fabulous (and so much better than last summer)!"

Our whole family is looking forward to our trip to the U.P. in a few weeks. While we were thankful and lucky to be able to go last summer, it was a totally different trip than normal.  Becca was on IV fluids at night (even while traveling up and back), and she was having bathroom issues, so we had to stop every 15 minutes.  In addition, she had a central line and couldn't get wet at the beach or on the boat.  Hanging over our heads the entire time was the knowledge that we were going to have a horrid 2-3 months ahead of us in the hospital following the trip, and to top it all off, there were no blueberries to pick!  Yes... that's my favorite thing to do there each summer.  This year, I'm not worried about any of these, except that maybe the blueberries will not be ripe for picking :).  Before we go north, though, Lily and Becca will both head to a six-day overnight camp at Camp Joy through Cincinnati Children's.  This will be their first time attending, and they are really excited to go together and do "campy" things.      

Healthwise, Becca is doing great!  The labs that were drawn during her last clinic visit at the end of June were terrific, and she is full of energy. On July 26th, she will be one year post-transplant, which is hard to believe.  Becca has done so much better than we had expected over the past year... surely a reason to celebrate and be thankful for all of the prayers.  She will go to the clinic on July 29th to have labs drawn, see Dr. Grimley (her bone marrow doctor), and have an EKG and echocardiogram.
 
For those of you who haven't heard, Ethan is going back to college to get his nursing degree from the University of Cincinnati. He had been thinking about it for over a year, and we decided that now is the time.  He thoroughly enjoyed and completed his first course at the end of June, and he will start with fall classes in August.  Ethan has also been enjoying the summer, which is something new.  Usually, he's working so much during high golf season, and last summer we were in the hospital, so having time to tend to his garden (the huge one he planted in our yard) and to do some canning has been a gift to him. I am amazed at the crops "Farmer Ethan" has brought in, and I am, of course, enjoying the meals he is cooking.

I will try to post the next blog update after our UP trip and Becca's clinic visit, so until then, I hope you are all having an enjoyable summer filled with family, friends, fabulous food, and fun!  I'll leave you with the pics below...
TK
 

 Fun with the Virginia cousins at the pool

 Yes, I was on the other end of the teeter totter...

 A very wet 4th of July with Great Nana and Great Papa

Swimming buddies

 Our little firecrackers

In a cool tree in front of Krohn Conservatory before the butterfly show

 Cousin Ricky visited Soak City for the first time and LOVED it!

 Neighborhood "walk-in" movie night (that's Becca's cute hiney in the middle)

Sliding at the Dragonfly Foundation picnic... prior to the biggest water balloon fight ever

Roller Becca thoroughly enjoyed the skating party

5.10.2013

Butterfly Walk TOMORROW!

Hello Becca's Believers!

I just wanted to give you a little information about tomorrow's Butterfly Walk.  All of the teams will gather prior to the walk in the grassy area next to the basketball/tennis courts.  We have been assigned to STAGING AREA #5.  We have a HUGE group of 80-90 people (yay!), so we should be easy to find.

If you haven't already gotten your T-shirts (or requested them) from me and are NOT running the 5K, I will have them for you at the staging area along with wrist bands for the festival activities.

Apparently, those who are registered for the 5K are responsible for picking up your own shirts and chips, and you should have received an email about that earlier from the Walk coordinator. The following team members are registered for the 5K (I do NOT have the following people's shirts):

Hilsmier family (all five of you)
J. Wilson
R. Yatam


If you are already registered and are not running the 5K you do not need to be at the staging area until 9:20-9:30ish, but you definitely don't want to miss the opening ceremony at 9:40.  It is very touching, and Becca will be able to accept her own medal this year!  She is SO excited!!!  I would LOVE to get a team pic before the walk this year... so if we could take it right before the walk begins (at 10am), that would be great.  

As far as parking goes, there is limited parking at Cottell Park, so they have set up two satellite parking lots. One is at Christ Church at Mason (5165 Western Row, Mason, OH) and the other one is located at the North Cincinnati Community Church (6170 Irwin-Simpson Rd). There will be shuttle buses running from 6am-3pm between both churches and the park. Overflow parking is also available on the streets in the surrounding neighborhoods. Click Here for directions to the site.

Schedule of Events 

8am – Onsite registration opens
9am – 5K Run start
9:40am - Award Ceremony/Survivor Ceremony
10am - Inspirational 1 Mile Walk
Fun Festival until 2pm
11:30 Junior Jog

***Also, I want to remind you that Hoxworth Blood Center will be at the event from 8am-2pm.  There is a desperate need for blood and that need always goes up in the summer months.  If you are able, please consider giving on Saturday.  To schedule your appointment please visit http://www.hoxworth.org/groups/butterflywalk.html or there is a link on the Butterfly Walk page.  You will need a driver's license with you.

Oh, be sure to wear your Becca's Believers shirts if you have them!  If not, that's okay, too... just wear pink or purple (or even the t-shirt you'll get in the morning).

If you have any questions, feel free to contact me at 513.335.3179 or trisha24ann@yahoo.com.  I look forward to seeing you tomorrow morning!

5.08.2013

There's still time to join us or donate!

I hope you can join our team, Becca's Believers, this Saturday, May 11, at Cottell Park in Mason for the CancerFree KIDS Butterfly Walk. Our family has done the walk since Becca was diagnosed in 2008, and it is something we look forward to every year.  Becca is so overly excited this year, since she spent last year's walk in the hospital, so I have a feeling she will be all grins and a bundle of energy!  We now have a whopping 75 members on our team, and a few more who plan to join us that day! 

Online registration is unfortunately closed, but you can register on the morning of the walk and join us at staging area 5. If you cannot make the walk, please consider donating (even a tiny amount) to a terrific cause... eradicating pediatric cancer. You can donate online at https://runsignup.com/Race/Donate/?raceId=2547&runnerFundraiser=LTksigjxQcKkvMNG. Be sure to list "Becca's Believers" as the team and "Trisha Kniskern" as the captain so that your contribution goes towards our team. If you do not feel comfortable donating online, cash or checks can be mailed to CancerFree KIDS or given to Trisha. Thank you for your support... it truly means the world to our family!

I will post more event day details on Friday night...
TK

  

4.21.2013

Loving School

Scout Becca

So Becca will be starting her fourth week back at school, and she is loving it!  She picked up with the routine pretty quickly and has been enjoying getting to know her new friends.  When asked her favorite part of the day, Becca replies, "Snack."  Lunch and recess are her least favorite.  Unfortunately, Becca has been blessed to be a "super smeller," and she is extremely offended by the smells of other students' lunches.  Needless to say, she returns home from school each day with the exact lunch she left with in the morning, and  is ravenous.  On recess, she isn't really playing with other children, but she has learned to do the monkey bars and is showing some pride on that front.  Mrs. Finn explained that recess is difficult for lots of kindergarteners, as they get out on the big playground and run around, but then they cannot find each other.  Hopefully it's just a stage, and the kids will grow out of it.

I am really enjoying hearing Becca tell me about the things she is learning at school... it has been a long while.  Her cute little voice talking about spheres, cylinders, cones, seeds, roots, and plants, singing songs from her upcoming class musical, and explaining art projects she is creating is music to my ears after a year-long hiatus from such things.  Though the first day away from her while she was at school was difficult (not knowing what was going on or seeing her for an entire school day after a year of constant surveillance), it is great that Becca has "her own thing" to tell us about later.

On Thursday this week, Becca will head to the clinic to see Dr. Grimley, her Bone Marrow Transplant (BMT) doctor.  She hasn't seen him since November or December, as we were moved back to the HemOnc side with Dr. Absalon.  We are at nine months post-transplant, and it is amazing how well Becca is doing.  She looks fabulous (hair still growing and curly!), feels good, and is doing activities that a normal six-year-old girl does.  Please join us in praying or crossing your fingers and toes for good labs!

On another note, the Butterfly Walk for CancerFree KIDS is coming up on May 11th!  This will be the fifth year that we have had a team for Becca, and we plan for her to lead Becca's Believers this year as we walk the one-mile inspirational lap around Cottell Park.  Last year at this time, she was again fighting for her life at Children's Hospital, so this year we have even more reason to really celebrate her courage while supporting an organization that funds important grants to researchers seeking a cure for pediatric cancers.  You all are invited and encouraged to join our team or to donate (even a small amount) on behalf of Becca's Believers.

Last year, we had almost 90 members and raised over $5,800!  Your $30 adult registration fee gets you a t-shirt, bracelet for the day's activities and food, and some other perks.  If you would like to do the 5K (which starts at 9am), the adult registration is $35 and child (12 years and under) registration is $20.  Youth (ages 3-12) only pay $15 for the walk and fun festival, and children under 2 years are free.

For more information or to register/donate, go to www.butterflywalk.org or https://runsignup.com/Race/Donate/?raceId=2547&runnerFundraiser=LTksigjxQcKkvMNG .
 Be sure to list "Becca's Believers" as the team and "Trisha Kniskern" as the captain so that your contribution or registration goes towards our team.  The deadline to guarantee a t-shirt is coming soon (not sure of the date), so if you definitely want one, please register soon.



I will post a quick update when we have labs on Thursday and will leave you with a video of sweet Becca singing one of the morning songs from school:  http://youtu.be/Z1X7qDIymhw
TK

4.01.2013

Back to School!

 Yes, I made her pose with the backpack (without the winter coat).
 Our "puzzle queen" insisted on doing a puzzle while eating breakfast.
Sisters waiting at the bus stop together, and BOTH of them boarding the bus!

I cannot believe it's been a year!  April 2, 2012, was the last day Becca attended school, and today she returned a year older and exponentially healthier.  Boy, she's had a year!

To think about all she has been through in a year to make it to this day exhausts me, while simultaneously humbling me.  This child of mine will be able to do absolutely anything she sets her mind to in the future.  My Becca is a fighter (always has been), and she will let nothing stand in her way.  She has overcome so much in her short life, and I am having trouble putting words to how overcome with joy I was to send her off to school again.  As Ethan and I animatedly waved goodbye to the bus this morning, I had tears welling, and my heart felt like it would leap out of my chest.  Being without her at home today (I had an extra day of spring break) felt odd, and I really think Ethan will miss having her with him during the weekdays.  A huge thanks to Mrs. Finn for texting me at lunchtime to let me know that Becca was doing great, and that she would probably be wiped out tonight.  I was wishing that I was a fly on the wall in her classroom all day.

Even though the school bus always drops the girls off at the same time each day, I wanted to go out ten minutes early so that I wouldn't miss them getting off the bus.  Yes, Ethan made fun of me.  I shot video while he snapped a pic on my phone, but I had to stop recording so that I could get a running-into-my-arms hug.  Trust me... I'm not complaining.  We got the girls in the house pretty quickly with freshly-made chocolate chip cookies, and Becca was tired of our questions within a couple of bites.  I got a glimpse of a "normal" kid while we were trying to pump her for info.  You know, when you ask your child what they did at school, and he/she says, "Nothing," or "I don't know," or "I don't remember."  It used to drive me crazy when Lily did that, but it is refreshing to see from Becca, even though I was dying to hear how her day went.  I knew the day's events would all come out later (when I wasn't really asking), just as they always have with Lily.

The bottom line is that Becca had a wonderful day, everyone in her class was super nice, Mrs. Finn and Mrs. Montag were really happy to see her, and she wants to go back tomorrow.  What more could we ask for?!  While I thought she would be so exhausted that she might just want to chill on the couch with a movie, Becca started a puzzle, tortured our kitten, ran a few errands with me, played with the neighbors, finished the first puzzle and did two more (at the same time nibbling on her dinner), watched a little bit of a movie while snuggling with me, and read books at bedtime.  I will say that she drifted off rather quickly once she was horizontal.

Oh, by the way, Becca went to day hospital last Tuesday to have IVIG, labs drawn, and her monthly check-up.  It was actually seven months to the day that she had received her bone marrow transplant!  She's looking pretty good considering she is only seven months out.  Unfortunately, accessing of her port still doesn't go well, and de-accessing is no picnic either.  We thought we would want to get the port out ASAP so that she doesn't have to get poked in her chest, but we are not sure how many more months of IVIG Becca will need.  Rather than using one of the veins in the crook of her arm (which is what we thought they could do), they would need to utilize a vein in her hand for the almost four hours the infusion takes.  We opted to wait until they are sure that she's finished with IVIG for the port removal.

Though he was on service that day, and we were scheduled to see Dr. O'Brien, Dr. Absalon sprinted up the stairs to see Becca and visit with us.  He is so dedicated and caring, and we are so thankful that he has been Becca's oncologist throughout this journey.  Ethan made sure to tell him it was great to see him when he wasn't telling us he thought our daughter was relapsing.  Her labs looked great, and her engraftment test showed 99.4% male donor cells!   

We had an enjoyable spring break at home for a change.  Though the weather was cold during the week, the weekend was fabulous and gave us a taste of spring.

 Our Easter bunnies
 Scout Becca
  Easter brunch with Nana and Papa

Finally, time to put in our plug for the one charity we actively do fundraising for each year (I'm going to cheat by copying the email I sent out in March)...


The 7th Annual Butterfly Walk for CancerFree KIDS will take place on Saturday, May 11th, at Cottell Park in Deerfield Township. The funds raised from this walk will go toward pediatric cancer research, and I have again formed a team for my six-year-old daughter Becca.  She was originally diagnosed with leukemia (ALL) in October of 2008, went through a grueling three years of treatment, and then was diagnosed with therapy-related leukemia (AML) last April.  She received a bone marrow transplant in July of 2012 and is passing yet another milestone this spring as she returns to school.  We are continuing to celebrate her strength, courage, and resilience, and though she was not able to attend the walk last year, she is very excited to lead her Becca's Believers team in the Butterfly Walk this year! 
 
The walk is only a one-mile walk, and there are lots of fun family events during the day.  The 5K run will continue this year, so if you are "into" the running thing, you can participate.  The Junior Jog will also be taking place, as well as the fun festival that lasts until 2pm.  We're hoping for beautiful weather again this year, but even if it's like prior years, we'll still have fun and show our support. 
 
I have registered our family, but we need at least ten people for the team ("Becca's Believers").  Last year, we had almost 90 members and raised over $5,800, which was awesome! Your $30 adult registration fee gets you a t-shirt, bracelet for the day's activities and food, and some other perks.  If you would like to do the 5K, the adult registration is $35, and child (12 years and under) registration is $20.  Youth (ages 3-12) only pay $15 for registration for the walk and fun festival, and children under 2 years are free.  If you cannot attend but would like to donate to our team, we would welcome the support... after all, the faster they find a cure for cancer, the better! 
 
For more information or to register/donate, go to www.butterflywalk.com or 
https://runsignup.com/Race/Donate/?raceId=2547&runnerFundraiser=LTksigjxQcKkvMNG.  Be sure to list "Becca's Believers" as the team and "Trisha Kniskern" as the captain so that your contribution or registration goes towards our team. 
 
Hope you can join us in walking/running to find a cure for pediatric cancer!


Thank you to all of you for the continuing prayers for Becca and our family... they are what keeps us going.
TK  

3.05.2013

Chimera

When my nephew MK was a little guy, I recall him running around gleefully in a wild spinning pattern outside his house.  He was having a grand time sporting a massive smile until he ran face first into a parked car that had been there the whole time.  In his blind joy, he just forgot about the massive chunk of steel that sat emotionless every day in the same spot near his back yard in Hyde Park.  Well he was fine after his splat. His pride was bruised, but he recovered and probably made a log entry into his 2-year-old mind that there was a force in the world greater than unchained happiness.

So we received "The Phone Call" from Children's Hospital.  Dr. Absalon, for the fourth time, told us that the cancer might be back based on a genetic study that they do every month.  This FISH analysis indicated that there are two DNAs existing in Becca's body.  Without going into exhaustive detail, Becca was at 100% male DNA (her donor was male) and now she has almost 2% female DNA (her original).  The implication of this result is that the cancer could be coming back (a relapse) or she is a "chimera."
We received "The Call" last Thursday and went in for a bone marrow aspiration on Friday morning.  Very little routine happens at Children's over the weekend, so we had to stew (A.K.A. "freak out") for a few days until the results came back.  Last evening we were told that there was no leukemia evident in the bone marrow (GOOD NEWS!).  They never say that there is "no leukemia" only "no evidence of leukemia," but I will not get too picky about good news.

We have been having a great time running around doing fun things, planning trips, planning to go back to school (both me and Becca, FYI)  and  thinking about scheduling an O.R. time to get Becca's port removed.  I think that we are far enough out now that I can say out loud that since we walked out of the hospital after her transplant, we have not spent one damn night in that place. That is pretty flippin' rare.  SPLAT....so we ran into our version of the parked car.  We are joyful and will still run with a HUGE smile, but we were certainly reminded of the emotionless greater force that looms in the background.  It is right where we left it last time.

But we are all smiles right now, and that is the important part!
EK

1.01.2013

Hello 2013!

As I have watched the year in review lately on all of the news stations, and I have (again) seen all of the bad/sad events during 2012, as well as reflecting on everything our family and many others close to us have been through, I am so ready to move on to a new year!

Charles Dickens wrote: "There are dark shadows on the earth, but its lights are stronger in the contrast."  The outpouring of kindness and generosity from family, friends, community members, and complete strangers in the midst of the last nine months of turbulence has surely proven to be a counterweight keeping us balanced. We could not have made it through 2012 without the help and support of so many of you. From providing tons of bribes and treats for Becca and Lily, to supplying help in the care of Lily and our home, to donating time or money so that Ethan could take a leave from his job to care for Becca, to lending an ear to listen or a shoulder to cry on as we struggled, to offering up daily prayers for Becca and our family, to delivering goodies to the hospital so that the monotony of hospital life (and food!) could be broken, to all of the sweet notes and cards sent to let us know that we were not alone, and to the other large and small things I'm neglecting to mention.  In addition, we are so thankful for the talented nurses and doctors who have so capably cared for Becca, the other professional hospital staff who have provided various therapies and entertainment, individuals who have given of themselves (some of them conquering huge fears) to donate blood or platelets, those who have registered as bone marrow donors with bethematch.org, the individuals and families who have donated money to further pediatric cancer research, and especially the epitome of goodness and self sacrifice... the 21-year-old young man who donated some of his bone marrow to save our child's life!  Words cannot ever express our gratitude, but hopefully someday we will be able to try to thank him in person.

Well, anyway, we frequently write in this blog that no news is good news, and that is surely the truth.  I'm happy to not have written for a while.  The Kniskern family's 2012 ended with a trip to Florida so that we could have the summer we didn't experience.  Though the weather wasn't quite as warm as the summers here in Cincy, it was fabulous to be able to swim, go to the beach, and do some things that were not possible this past summer.  On the last night of our vacation, it was finally warm enough for Becca to be able to swim naked in the pool (hee hee!), which was a primary goal for our trip.  Some of the other fun things we did included seeing Winter (the dolphin from the movie Dolphin Tale) at the Clearwater Marine Aquarium, collecting shells at Honeymoon Island's beach, and building sand castles, jumping waves, chasing the seagulls, and making the girls into mermaids at Clearwater Beach.  We also managed to squeeze in a quick visit to Give Kids the World Village to see Becca's star, ride the carousel, play on the life-size Candyland playground, and have ice cream for breakfast.  Becca didn't remember visiting the village for her Make-A-Wish trip three years ago, so it was great for her to be able to see what an amazing place GKTW is.

Becca and I had to head down to Children's yesterday, so that she could have labs drawn, IVIG, and her port flushed.  We arrived a little early for her 7:30am appointment (thanks to many people not working yesterday), and we were out of there by 11:30, so it was a relatively quick trip to the day hospital.  The doctors were quite happy with the way she looks, and her labs were great.  The accessing of her port (sticking a needle into her chest) did not go well at all, and the de-accessing was even more difficult.  Luckily, she will now only need to have monthly visits to the clinic for labs and IVIG, and once May comes, she can have her port removed since they will stop giving her IVIG monthly in April.  The good news is that we will be seeing Dr. Absalon in the hematology/oncology department for our next few visits.  They are "transitioning" us back from the bone marrow transplant unit, so we will only see Dr. Grimley at the milestones (3, 6, 9, 12 months).  This is definitely a good thing, and we look forward to leaving the bone marrow unit far behind!

Becca is dying to go back to school, but unfortunately, the doctors want us to wait until after the cold/flu season has passed.  We would like to begin gradually by having Becca go to school for a couple of hours at a time beginning in late February or early March, so that she can meet her classmates and get accustomed to being in the classroom setting again.  The doctors believe that after spring break would be a good time for her return, and this is actually perfect, since that is where she left off with Kindergarten last year.  She is still working with Mrs. Finn at our house two days a week, and we plan to increase the frequency of her homeschool visits now that January is here.  Becca's stamina and energy level have definitely increased, but she is surely not ready for five days of full-day Kindergarten.

I have included some pics and a video from the past couple of weeks.  Right before we left for the trip, those of you who saw Becca noticed that her top front teeth were both loose and "bucking out," causing a space on both sides (and a rather goofy look).  A couple of days after Christmas, she lost one of the teeth, so now she has buds of both of her top teeth coming through her gums and a scraggly, dangling tooth in the middle.  You'll notice a different smile...    

 Just thought this was a beautiful profile of Becca.  Do you believe all that thick hair?!
 Full of energy at the beach
 Becca's star at GKTW
Before losing the tooth... See what I mean?
 Jumping waves at Clearwater Beach - do you see the joy on Becca's face?
 Before our trip, the day Becca's swim fins and mask arrived (thank you, Amazon Prime!)
 New Year's Eve party at Chez Kniskern, complete with way-too-short dresses from Becca's no more chemo party two years ago
 View of the sunset from our dock
 Becca was proud of her "pumping" on the swings at the Candyland Playground at GKTW
Cincinnati wasn't quite as warm when we returned, but at least we have a new family member

Finally, here's the link to a video of Becca (and a few shots of Lily and our new kitten Peanut) that is guaranteed to make you laugh:

Ethan, Lily, Becca, and I would like to wish you and your families peace, joy, happiness, love, and health in 2013!
TK