Special Spaces, Strike out Cancer and other wonderful things

  

K with Maddox at Wrestling

Yesterday was clinic and the beginning of maintenance cycle 3 of steroids and Vincristine.  Already we see a big change in her personality and cannot wait for this pulse of chemo to be over.  It concludes with another dose of Vincristine next week.  I received 3 calls at work today from Kennedy about her hair falling out and Gene has experienced the wrath of hunger, thankfully it is just seven days.  Not sure what is up with the hair!

Just being normal

We have been involved in some wonderful programming this month.  Gary and Alex (Kennedy’s BFF’s parents) nominated Kennedy to be the “Patient of the Year” for the annual bowling Strike Out Cancer event.  She received a ginormous bowling belt.  When the belt was presented, I must admit it was quite surreal.  The young man who presented Kennedy with her trophy told K’s story. I was so sad.  I felt so bad for the little girl and family going through childhood cancer but that family was us, me, her.  I was amazed at how far I’ve removed all of us from the equation; we just pretend everything is okay so often, we really do believe it.  Maybe that is a good thing.

K with her Strike out Cancer Belt

Brave at clinic - no tears!

Our neighbor and friend, Laura, also recommended Kennedy to a girl friend who is the director of Chicago’s chapter of Special Spaces, an organization that redesigns bedrooms for critically ill children.  Kennedy will be the organization’s second room remodel.  Kennedy is ecstatic.  I received a call from Kelly Knox, the Chicago chapter’s director and within a week, the entire team came out to meet with Kennedy to get her feedback and ideas. It was an amazing experience.  Kennedy’s new room is scheduled to be complete on May 4, one day after her 6^th birthday.

Teary eyed moment for mom

K with Ella at clinic while we were away

I’ve been bad about blogging lately because everything has been normal.  We feel like we have a normal life.  So here is my update since my “Toxic Liver” post.  While on vacation, Kate, Ella and Grandma Linda took Kennedy to clinic and everything went well.  K’s liver counts were only 10 times more toxic than normal (down from 20).  One week later at clinic they were up 12 time the upper limit, still within acceptable range.  One month later, she is still trending at 10 times the upper limit of normal.  The doctor told us to expect liver toxicity, it is just a part of the chemo treatment and it is hard on her organs.

That’s all for now.  Praying that we will get through the next 6-days without pain or incident.  Fingers crossed.

Toxic Liver

Getting hydrated at clinic

This week threw us for a loop.  When things seem to be going well, there has to be hiccup.  We planned an adult only get away; that should have been our clue that something was going to happen.  Kennedy started showing symptoms of a cold last Friday; which kept Mom and Kennedy home from a ski getaway with Dad, Maddox and some friends. K started feeling better on Wednesday and we were all set to send her to school on Thursday - wrong.  Thursday morning she threw up.  This made me worry and I started to add up symptoms – bruising, joint pain, headache, stomachache, nausea, cough, stuffy nose, night sweats, weight loss - the same symptoms we saw when Kennedy was diagnosed.  I stayed home and called Dr. Manera and he told me to bring her in on Friday morning.  She threw up again on Thursday night and was miserable.  I did everything I could not to panic.

Friday it snowed and the world forgot how to drive.  It took us nearly 1.5 hours to go 25 miles to clinic  When we did get there, doc determined K’s counts were good but she was severely dehydrated.  They pumped two bags of fluid into her and sent her home.  She also lost some weight (3 lbs) so we were able to decrease her weekly chemo by ½ pill – which was fine because I took it upon myself to decrease it by that much the night before.  I mean, who can give a pill that causes nausea to a kid that just threw up so I gave her the smaller dose.  (She takes 1.5 pills of 6mp four times per week and 1 pill 3 times, I gave her 1 on Thursday night versus the scheduled 1.5).

Two hours after we left clinic Dr. Manera called, our conversation went something like this (of course this is abbreviated to edit out me panicking):

Doc: “We got her virus culture back and it is rino-virus, aka the common cold”

Me: “That’s great, just a cold…hmm, why is she throwing up?”

Doc:  “Lots of kids have been very sick from rino-virus, in fact, I’ve had to hospitalize a few for dehydration and fevers”

Me:  “Okay, guess we are one of the lucky ones”

Doc:  “There is another thing….her liver enzyme counts were very high, more than 20 times the normal level of toxicity”

Me:  “Well, what do we do, what causes this?”

Doc:  “It could be the chemo, we will need her to come in on Wednesday and have her blood taken again for counts, if it is still high, we will need to put her on chemo hold”

Me:  “Oh no, Gene and I will be on vacation, should we stay home?
Doc:  "No, no big deal, lets test her the following Monday then"
Me:  "But then she will have another round of Methotrexate on Wednesday night, I’m sure I can find someone to take her”

Doc:  “Just make sure they have a POA”

Normalcy - K lost her first tooth

I got off the phone and flipped out.  First, how could I send K to clinic with anyone but us?  Then, of course I played doctor by researching on the internet and learned that many docs stop chemo when the patient’s liver enzymes are 5 times toxicity.  Of course I paged the doctor back and told him we should put her on chemo hold now.  He talked me out of it - stating that by Wednesday it might go down, it could just be from the cold and dehydration.  I made him swear that her best interest was taken into account, regardless of the protocol.  He assured me her best interests were being considered first.  I can’t do anything but trust him, he is one of the best and he told me he’s seen this countless times.

Then the planning started…do we stay home?  Do we send her to clinic?  If so, with who?  No one knows where clinic is, or about how we don’t sign in, where to sit so we are away with flu-sick peds kids, how to put on Emla cream pre-clinic, etc.  I called 4 people to figure it out – Grandma and my 3 new friends that I made from clinic during the past year - Kate (Ella’s Mom who’s been through this), Donna (her son is also in treatment) and Megan (the child life specialist at Loyola).

Cookies made by K when sick

We figured it out.  Kate is going to go to clinic with Grandma and Donna and Megan will be there too.  Kate even made it one step more special by letting Ella miss school to keep Kennedy company. Kennedy is ecstatic she can sleep at Grandmas the night before and can’t wait for her clinic play date with Ella.  She hasn’t had a play date in months!

I spent the last few days scheduling every day we are gone.  Who goes where when and what meds are given on what days and who will give them.  I have a daily calendar that is structured by the hour.  For me this is huge, I am NOT an organized person.  If anything, we are 5 hours away.

Now to get on the plane tomorrow morning….

Kicking Cancer's Butt and Icky Chemo

Waiting at clinic

Today marks almost a year since Kennedy was diagnosed with ALL B-cell leukemia.  It was February 2, 2012, when we learned our 4-year old baby was in for the fight of her life.  Here we are, almost a year later and we are 1/3 done with treatment.  Some how we face the year anniversary of her diagnosis with dread; I don’t know if we will ever erase the feeling of that day from our hearts but we will certainly try to move past it.  So now it’s time to party, to celebrate her life and this past year of kicking cancer’s butt.  I’m not quite sure what we’ll do yet but we will definitely thing of something!

CureSearch 2013 Brochure

I mentioned in my last blog that Kennedy was being used in a video montage for CureSearch.  Well, we also found that they are using Kennedy for the nationwide CureSearch Walk brochure cover.  It’s part exciting and part sad.  It’s exciting that out of a ton of patients and pictures, they chose Kennedy to represent CureSearch in a big way.  It is sad because it is for children’s cancer and I wish from the bottom of my soul that she didn’t have cancer to be a model for.  Guess what charity is my focus this year????  Anyone gearing up for that September, CureSearch walk yet?

K and Zoe Snowball

Kennedy had chemo on Wednesday – the yucky kind called a lumbar puncture (or intrathecal).  They inject Methotrexate into her spine to prevent any rogue cancer cells from entering her brain or spinal column.  This treatment is the worst for us as parents to watch since Kennedy is put under.  This time it was particularly painful because she was overdosed with Ketamine and it took three attempts to puncture the correct part of her spine.  The procedure started with the anesthesiologist (that I never met before – Dr. Ebogi?) administering 20 mg of Ketamine.  Her normal dose is 20 mg and he pushed it in rather quickly.  Once Dr. Sarvita punctured her back, Kennedy mumbled “ow” lightly; this is typical.  Then K repeated “ow” and then added “Hi Doctor” – not good.  The anesthesiologist decided to administer more Ketamine, 10 more mg, way more than she needed.  After 2 more attempts, Dr. S punctured the correct part of her spine and we were done.  Another highlight of last weeks visit is that her 6MP dose was upped.  K didn’t gain weight but she did get taller – darn those growth spurts.

The after effects of the chemo weren’t good.  She normally handles it all pretty well but she was terribly nauseated for the rest of the day, exhausted and complained of back pain.  All of which could have been avoided.  The good part about the clinic visit that day is that we were in and out quick, under 2.5 hours, which never happens.  Also, Kennedy received a special bald American Girl Doll from Megan, K’s child life specialist and my friend.  Her new friend’s name is Zoe Snowball – aka Snowy.

Roller Skating

Skiing

Safari Land

Safari Land

Outside of an unpleasant clinic experience, all else has been going well.  Mom had the flu so we spent a week a part where I couldn’t hug or kiss my princess - masks and sanitizer were a big must in our house.  I took 2-weeks off during holiday break and spent much needed time with both kids.  We went ice skating, roller skating, had play dates, visited John Hancock Observatory, Safari Land and anywhere else we could think of.  When dad was home we did more ice skating and even went skiing.  As a crazy working parent, this time with them was more precious then I could have imagined. Going back to school and work was sad for all of us!

That’s all for now…18.5 months until we are done with stupid cancer!

Observatory

Hanging with Emma

Hair-loss, Clinic and CureSearch

Holiday Fun

Health wise, the month has been good.  Kennedy had clinic last week and her counts were 900, we lost enough of the steroid weight to prevent an increase in her meds and everything is returning to normal.   Emotionally, it has been a tough month.  Her favorite nurse wasn’t at clinic and one of the newer nurses missed her port causing much distress.  Also, Kennedy’s hair started to fall out again. 

Missing Hair

Clinic is traumatic enough for K; a missed port access causes so many problems I can’t even explain.  It takes months to overcome a miss.  After the ER visit miss, Kennedy has been anxious and distraught about clinic visits.  The ride there is tense and once we get to clinic, she clings to me or Gene for dear life and screams in horror when the needle (the size of a fishing hook) comes at her.  Her favorite nurse Anette calmed her fears by hitting it dead-on the last few visits but all that was erased when Anette wasn’t in clinic last week.  I had to listen to Kennedy scream as they kept adjusting the needle to get in; very traumatic.   The whole process makes me ill.

Making Hair-loss fun

Two weeks ago we noticed her hair started falling out again.  I can’t explain the dread or pit in my stomach when I noticed this.  At first I noticed it getting thinner, I could have sworn it was coming in thicker.  Then, as we were putting her pigtails in, I noticed the parts seeming overly wide; then it hit me.  I ran my fingers through her hair and more than 30 strands easily came out.  I did it again, and again they fell out, strand by strand.  Gene and I looked at each other and we both felt it. It is hard enough to know your 5 year old is fighting cancer but for some unexplainable reason, seeing it (through the nausea or hair loss) is so much more devastating.  I took a time out and cried (privately).   Our nanny thought we shouldn’t tell Kennedy about it but we promised we wouldn’t keep anything from her; I mean what if it all falls out again?  We told her how pretty she is so it really doesn’t matter, it fell out once and came back, etc - thankfully she agreed.  I had her laughing and she seemed fine with it all.  She’s got such a great spirit.   Over the past few days, it seems as if the hair-loss has slowed.  Hopefully it just thinned and will grow back quickly.

Some good news:  CureSearch reached out this past month to include K in some of their campaign collateral for 2013.   They requested a few pictures and quotes and put together a short 30 second slideshow video of Kennedy’s journey to be used on the website (see inset).  They will also be including her in some of the campaign collateral.  Kennedy loves the attention.  I love the meaning behind the organization.  Every day, 36 children are diagnosed with cancer, 1 out of 5 children won’t make it.  That translates to 7 of the children diagnosed today will likely die.  CureSearch works on raising money to find a cure.  Unlike some of the other great pediatric cancer charities out there that provide gifts and great experiences for kids with cancer, this one actually aims to stop cancer if it hits.  This is so important considering only 4 percent of funds raised for cancer by the American Cancer Society goes towards curing pediatric cancer.  The study Kennedy is on is backed by CureSearch.

Kennedy at her holiday show

This last week has been tough on the world with the loss of so many lives, mostly children, in Connecticut.  I’ve been trying to not watch TV, read the newspaper or follow Facebook so closely.  It is so emotionally painful, I try to tune it out.  For the first time probably ever, most of the world envisioned what it would be like to lose a child; they put themselves in the shoes of the parents that will never see their little ones again.  For me, I can’t do that, I try so hard not to.  It’s has taken me months to not think about what it is like to lose a child.  When Kennedy was diagnosed, pushing those thoughts out of my head was a daily challenge and I can’t go back to that place again.  A day after the tragedy, a friend asked innocently “can you even imagine what it is like to lose a child?”, and sadly I answered, “I have thought about it too much”.

Hold your kids tight, kiss them often and let them know how much you love them.  Never take a single second for granted!

Chemo, Diet and Thanksgiving

Kennedy finished her steroid-round and had chemo on Wednesday, the day before Thanksgiving.  Maddox came with us to clinic and we were glad he did because it was a long day; we got in at 9am and finally left close to 1pm.  Maddox kept us entertained.  

Kennedy gained 4 lbs in one week from the steroids, nearly 10% of her body weight.  The weight gain resulted in Dr. Manera wanting to up her nightly 6MP (mercaptopurine) oral chemo for her new “surface area”.  The goal is to have the kids on the maximum tolerable dosage.  Sounds nice right?  Tolerable?  Tolerable is a good word since the medication keeps Kennedy nauseated most of the time, I couldn’t imagine giving her more. 

I can’t believe I did what I did but I actually negotiated with Dr. Manera. I told him I would make sure Kennedy got her weight down to pre-steroid weight so the increase wouldn’t be necessary.  We would need to trim the weight in 3 weeks;  much harder than it seems.  One week on her diet and she’s actually gained almost another pound.  Poor K, my stalling tactics won’t survive the next visit and her 6MP will most definitely be upped.  Stupid cancer.

 

Maddox’s birthday fell on Thanksgiving this year.  Since we didn’t know how Kennedy would feel after chemo and from her roid withdrawl, we decided to celebrate at home.  We felt being home would be the most comfortable place for her and also a place we could focus on Maddox turning 8.  Grandpa, Grandma and Uncle Sergey, spent the day with us. 

By Saturday, all was seemingly normal again and K lost her roid rage and became a complete doll again.  We had our family photo shoot on Saturday (THANKS LIDIA)and Sunday K got to celebrate Maddox’s boy-birthday party with him at Laser tag.  Being the token girl, she had the time of her life.  On Monday, I unfortunately got the flu so am on lock-down.  Praying that everyone stays healthy!!!!

ER Visit and Steroid Week

At Loyola ER

We are prepping for clinic tomorrow and are prepared for our new-normal life to be yet once again turned upside down.  Kennedy gets Vincristine through her port at clinic tomorrow and also starts a 7-day run of steroids.   It seems as if just as things start to become normal, we are tossed back into a chemical nightmare.  The side effects of this chemotherapy include hunger, puffiness and intense muscle/joint pain.

Kid Yoga

Since I haven’t blogged in awhile, I figured I’d catch up now.  We had an unscheduled ER visit last weekend.  The cough that I heard in Kennedy’s classroom by a classmate just 3-weeks back made its presence at home 2 weeks ago.  When visiting her class, I heard the thick congested cough and had a full blown panic attack.  I called the teacher, nurse and principal and insisted that all of the kids in the class need to use sanitizer immediately - I'm sure I sounded crazy as I told them I wasn't sure I should continue sending Kennedy to school.  Up to this point, only Kennedy used sanitizer.  I ordered 4 enormous gallons of alcohol-free sanitizer from Amazon and as far as I know, all the children are using it and the school has me on crazy-parent watch.

Halloween Goodies

Unfortunately, my efforts were a little too late.  Kennedy’s cough resulted in a temperature bouncing between 100.5 and 100.9 and we were sent to the ER.  We were there for 4 hours where she needed two blood draws, one from her port and the other from her arm. 

Since Loyola is also a teaching hospital, it seems we also got to play test-doll for a trainee learning how to access a port.  I should have known better when the head nurse came in with two younger nurses.  It was the way the assisting nurse was feeling around K’s port that gave it away.  I asked if she had done this before and she assured me she most certainly had.  Of course she missed and the head nurse had to fix the error.  The same error happened earlier when drawing blood on Kennedy's arm as I saw a different nurse poking around with the needle.    I forgot how protective and on guard we as parents need to be, we are our child’s advocate.  Gene and I were on edge after the two misses.  Thankfully Kennedy’s counts were high enough so she was given a preventative dose of antibiotics and sent home.

Circus Fun

Outside of the hospital visit, the last month has been good.  We had a Halloween party for the kids, we went to kid yoga and we were spoiled by Jon Troy at Feld yet again and given front row and stage seating at Ringling Bros circus.   Kennedy is loving school and has been going to gymnastics at the Y.  We are keeping busy and trying to have fun.  Hoping for a quick and painless roid run.

October Chemo and Other Stuff

K at Build-A-Bear post clinic

Today’s clinic visit was very stressful for Kennedy.  As visits become less frequent, she has started to develop anxiety about having her port accessed.  Mom and dad have the same anxiety.  When she was first diagnosed everything seamed surreal and we became numb to the needles and treatments.  Now the treatments are traumatic for all of us and we drove to clinic in silence.

The visit itself was overall good, K had a spinal infusion of methotrexate (aka intrathecal). This treatment infuses chemo into her spine to prevent any rogue cancer cells from traveling to her brain.  

Dr. Sarvita was our doctor for treatment today and K adores her.  We spent extra time waiting for counts since the tube (kind of like what they have the banks to bring money from car to teller) was broken and no one knew it so her blood work didn’t make it to the lab when it was supposed to– this added an additional hour to today’s visit and procedure. 

Kennedy’s counts came back extremely high (over 3500) which is very odd.  They think it is likely due to her possibly having some type of virus and her body fighting it off.  The doctors weren’t too worried and the high counts allowed us to proceed with the chemo.  K was put under with Ketamine and the procedure took a total of 5 minutes (but a half hour from beginning to end).  Coming off the Ketamine, Kennedy was loving and silly as always and she continued to tell us how we had 4 eyes and 2 noses as she was coming off the drug.

Dr. Manera came downstairs from the hospital to spend some time with us.  Apparently we are still the only low risk diagnosis made this year based on the new protocol.  We are also the only one in clinic on K’s protocol.  Dr. M was very happy to see us and us him. Megan from Child Life also hung out with us while we waited.  We got to clinic around 9am and left at 12:30pm.

K and daddy with her cute little pigtails

After chemo we took her to eat and to Build-A-Bear.  The procedure wore her out so we went home to rest and later headed to the reading night at school.  This evening she has been complaining of nausea and back pain (from the pokey) but is overall in good spirits.

I must vent a bit   I have to say it is so frustrating going through what we did during the day and then walk into a public area (like school tonight) and see normalcy.  Nobody knows what our day was like but we do.  I’m intrigued that people can find importance in protecting peanut-free cookies and am amazed that we could get shamed for grabbing one when not allergic to nuts at tonight's book night.  When this stuff happens, I want to scream.   I mean seriously, do people even have a clue of what they stand for sometimes?  If there was a shortage of peanut-free cookies, I would have gladly gone to the stores and bought the whole shelf.  And it’s great they have cookies for kids allergic to peanuts or gluten but what about a special section for a cancer patient that can’t sit packed-in like a sardine with all the kids on the floor of the gym?  I mean, if a kid doesn’t get to eat a cookie, they will survive.  If my kid sits among the stuffy noses and coughing, she could be hospitalized. 

I understand the world doesn’t stop for Kennedy and I am fine that there wasn’t a special section available for her at school tonight.  But with that said, why should we protect cookies?  I'm sure the peanut allergy kids would be okay without special food even if they ran out - just like I was okay there wasn't a special area for a cancer kid.  Okay, enough ranting; I’ve had a long day and I’m probably not even making sense at this point. 

Great America visit October 2012

A quick overview of the last 3-weeks:  K loves school and has been doing great.  Kennedy is a daredevil and dragged us on both the Demon and Eagle at Great America last week and has been living it up like any normal kid.  She still has emotional outbursts and I’m not sure if they are chemically induced or just part of being 5.  She continues to take daily chemo of 6MP (Mercaptopurine) and weekly doses of Methotrexate.

Next in-clinic chemo round is steroids and Vincristine that falls around Thanksgiving.  In the meantime, any in-clinic visits will be blood-draws.  As the weather gets colder and flu season approaches, we are staying positive and praying that K stays healthy and happy and we only visit clinic for pre-scheduled treatment/blood draws.