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.  

Keeping Busy

At Disney on Ice

An ambulance and fire truck were at our house today.  Thankfully, it was an error because Kennedy called 911 when her and Maddox fell while playing so she wanted to the call the doctor (no worries, no one was hurt).  I think Gene barely lost his mind when he drove up after work and saw that.  We are a bit stressed these days and never know what to expect.

K had clinic last Thursday and was shocked when she had to get a flu shot.  Yes, another pokey!  Her counts were good, too good; likely because we messed with her meds by giving her 6mp earlier in the day to try to evade the nausea.  We got our hand verbally slapped and we are back to giving the med before bed which means nausea is pretty constant; some days are good, some not.

With Emily and Kaitlyn

It’s almost October, almost 8 months since Kennedy was diagnosed.  These last 8 months have been tough.  We’ve made a lot of great new friends and we’ve also lost many friends that we have known seemingly a lifetime.  I’m sure with any major life occurrence this happens but some of it is hard to take when everything else in life seems so up in the air.  I can’t say I’m disappointed so many friends have disappeared from our lives as they probably weren’t that great of friends to begin with, but it does hurt sometimes to look around and realize that when we stopped trying (when K got sick), so did they – when we needed them most.

Gene and I smile when we tell Kennedy’s story now. We tell people everything is “fine”.  We say that we are “lucky” that Kennedy has this type of cancer.  Gene and I do what Gene and I do best, protect everyone but ourselves.  Perhaps if we announce this bs enough, we too believe it. 

At the Starlight Foundation event, picking a pumpkin

I have been too tired to blog about anything lately; we keep ourselves busy, almost too busy.  This is how we deal.  Kennedy has gotten to take part in Disney on Ice (thanks Jon Troy from Feld Entertainment), we went to a Starlight Foundation pumpkin event, we got to go on-field at a White Sox Game (thank you Amy at American Red Cross), and the list goes on.  I keep myself busy by obsessing with working-out and Gene buries himself with work.  It is just what we do to pretend life is normal.

So now that the shock of what has happened to K has worn off, I’m on to the “why”.  I learned that many of the Hurricane Katrina victims that were put up in trailers by FEMA attracted various types of cancer (which included Leukemia).  The cancers were attributed to the Formaldehyde the interior of  trailers are treated with.   When new trailers (and sometimes cars) are used in extreme heat, without airing it out, the toxicity is 400 times the legal limit when the formaldehyde turns to gas. The most common type of cancer associated with toxic trailers was AML Leukemia.  We recently ordered a formaldehyde test from toxictrailers.org and the buyers of our trailer agreed to test for it.  It’s not like it will change anything if it does test positive for formaldehyde since ALL Leukemia hasn’t been proven yet (and I’m no political guru for change), but I want to know if we caused this by bringing her there.  

For now, we just keep plugging along.  28 months left.

CureSearch Walk

Kennedy started kindergarten, a life occurrence we didn’t think would be possible 7 months ago.  We’ve come a long way.  Maintenance is not the cakewalk we thought it would be but it is one step closer to kicking cancer’s butt for good.  Kennedy now has morning sickness every day and her first few days of kindergarten were hell to get her out of the house.  Thankfully, a simple dose of Zofran nightly along with her oral chemo seems to do the trick for now.  If we had any concern that the nausea first reported 2 weeks ago was the flu or anything else, we are now pretty sure the oral chemo build-up is the culprit ,which is good and bad.  Good that it is not anything more serious, bad that we have 2 years of this left.

Other than her daily nausea, we’ve been living life hard.  We take our kids everywhere and live life to its fullest. 

Yesterday was the CureSearch walk and we are privileged to know so many wonderful and kind people.  The generosity seen from friends, family, acquaintances, colleagues and clients to help such a worthy cause has been humbling.  An old friend donated his dad’s birthday gifts to the cause.  His dad has also been battling cancer and just turned 70, they felt Curesearch was a good place for the gifts to go since no kid should have to go through what his dad has.  One of my best girlfriends got her whole workplace to kick-in to make her the single largest outside donor of our group.   There are so many stories of generosity it would take pages to list.  I am grateful to all the friends and family that came out to walk and give up their time early on a Saturday morning to support us in our battle. I am also grateful to those who couldn't make it to the walk but still contributed, every bit helps.

The walk was hard, not physically but mentally.  Walking from the parking garage to the event was overwhelmingly emotional.  Seeing the balloons released by all the families that lost a child or reading a poster about a little girl who died from AML at 11, was hard to digest.  I know I say it often but we are one of the lucky ones.  Kennedy’s cancer has definitely given the entire family a new perspective on life.  We know what matters, who are friends are and appreciate every chance we get to enjoy our life and everyone in it.

I am not numbering days on the blog anymore because it is honesty just to hard to keep up.  We are 7 months into treatment and have 23 months to go.  We are almost 25% done with stupid cancer.

Days 192 - 203

Kennedy's portrait for the Cure Search slide show

Look mom, no water wings!

Summer is almost over and Kennedy is going to start kindergarten next week.  When she was first diagnosed, that didn’t even seem possible.  We met with the school principal, nurse, social worker, kindergarten teacher and gym teacher last week and we have a plan to keep Kennedy safe.

Grandma, Auntie Julie and Kennedy

Arizona day out shopping

We got back from Arizona on Sunday; the kids had a blast.  Kennedy swam for 9 hours straight!  Julie treated the kids to a lot of fun, including crafts at Make Meaning where Kennedy decorated a birthday cake (including edible spray paint) for her cousin Ali and Maddox made soap for Ali’s birthday.  We did some shopping and a lot of eating.  We got to spend some much-needed time with grandma, auntie Julie and the cousins.  Although we had a blast, it is great to be home.  We aren’t the most organized family and I think our clutter was making Auntie crazy (that along with our dramatic son and non-eating daughter).  The flight to Arizona was LOONNGGG.  The flight was delayed for nearly 4 hours but otherwise, uneventful.  Kennedy wore a mask on the plane and they let us board first so we could wipe down the seat and her area.  Unfortunately, the trip back wasn’t as great.  Kennedy threw-up in the car on the way to the airport (the poor driver), in the airport and then again on the plane 2-3 times.  We are still not sure why.  We did give her some Zofran on the plane, which seemed to work.

At Clinic - love Maddox's choice of toys!

Today we had clinic.  Kennedy threw-up on the way to clinic, which was bad since I was driving and Maddox was in the back seat with K.  I felt bad there was nothing I could do but hand her the barf bag Gary gave us month’s back.  The doctors examined her ears to make sure she didn’t have an ear infection causing the nausea  but nothing was there.  Her counts were at 800 so the assumption is that she just has a tummy bug.  Being completely honest, the nausea and vomiting was so reminiscent of our return from Mexico, although we didn’t say it, Gene and I both thought the cancer could have been back but it was not something we gave much merit to.  She’s just a kid with a tummy bug, thank GOD!

Cancer?  What Cancer?

By the time we left clinic all was good but Kennedy got sick again on the way to lunch so we just headed home.  After some Zofran and some chill-time at home, I took Kennedy and Maddox to Extreme Trampoline, yes that’s how we roll – from puking to jumping.  Cancer, what cancer?  Our kid is normal and that’s how we try to live.

A little boy was diagnosed with brain cancer today in clinic.  As we sat on the other side of the curtain, I heard the pain and agony of the family being told the next steps.  Mom, dad, grandma and grandpa and Jordan (he’s 2), were there.  They couldn’t get the IV in and after several attempts and screams, I heard them explaining that a port would make things better.  Both Kennedy and I were in tears and Maddox asked to leave, it’s amazing how that feeling of just finding out returns.  As far as cancer goes, we are lucky with ALL Leukemia.  Please pray for Jordan and his wonderful family.  They need as many prayers as they can get right now. 

Lastly, thank you to all who have donated to the CureSearch walk.  We are kicking some butt in the war against childhood cancer and the money contributed will help find a cure for some tough forms of the disease.   We were asked to take a picture of Kennedy for a slide show for the event that expressed her journey through cancer.  My word was "hope", Kennedy's was "Never Give Up". If you haven’t done so already, please login to our page and walk with us on September 8.  http://www.curesearchwalk.org/faf/search/searchTeamPart.asp?ievent=1009283&lis=1&kntae1009283=C1B8853B38224340A74C694F784AB444&team=5165206&tlteam=4939253