Day 64

So here I am, back where I started the blog – sitting on the sleeping bench in Kennedy’s room at Loyola.  Kennedy almost didn’t have treatment because her counts were very low and she is back to being borderline neutropenic. 

Gene took Kennedy to clinic today and said it was very busy.  Many of the regular nurses weren’t there and the wait was longer than usual because everything was backed up, including pharmacy and lab.  Kennedy didn’t cry or scream when they accessed her port though she said it still hurt, just not as bad.  They took Kennedy’s blood and the initial counts came back around 400.  If the final numbers came back at the 400 level, they would need to send Kennedy home until her ANC went over 500.  Thankfully the final counts came in at 544 so they were able to start treatment.  

Dr. Manera is off for the rest of the month so Kennedy had Dr. Sarvita today.  First came the spinal chemo infusion.  Instead of our usual nurse administering the anesthesia, a doctor Gene had never met came in to hook Kennedy up.  Apparently she washed her hands but then proceeded to hook K up without gloves, Gene flipped and she put them on.  You think this would be a standard thing in the chemo ward with kids having low immune systems right?  Then came the actual procedure.  It took 2 pokes to get to the spinal fluid because the first one was dry – Gene said he could barely stand for the 2^nd one.  

After the procedure, K and dad had lunch at clinic and were admitted to the hospital.  K kept dad busy with a ton of art projects, trips to the playroom and potty breaks (hydration pre-chemo).  I came to the hospital around 6 and Gene went home.  Gene was greeted by Aunt Joanne and Uncle Jerry who brought him a fabulous holiday feast (thank you!).  

Kennedy started the dex and zofran (steroid and anti-nausea meds) around 6:30 and the 24-hour methotrexate drip around 7.  We still have the three hours of fasting (2 hours before and 1 hour after) for her 6MP so we worked that pill in around 8:30 and concluded the night with a huge bag of popcorn, string cheese and cucumbers (welcome back steroids!).  We made more art projects, skyped with dad at home and also skyped with Maddox, Anthony, Emma, Angela and Chris at Maddox’s sleepover.  We had a very filling evening.

I did notice Kennedy has a bit of a stuffy nose and seems to be coming down with a cold.  Hopefully it stays benign and we go home on Saturday.  The cold could be the culprit of the low ANC, I just hope the chemo doesn’t knock her counts even lower.

Her counts today are just a reminder of how fragile her health is.  This of course brings me back to my rant the other day - why don't people understand?  It also brings me to Kennedy's birthday in May.  I booked a date for a small (very small) birthday but I have no idea if we can host it.  It is one week after her 3rd admit and a time her counts may be very low.  She said she'd wear a mask but I'm still not so sure it is a good idea.  It is a very delicate balance - she's been through so much and needs to have a birthday experience but her health is so delicate, I'm scared.   I guess we'll just wait and see and if anything, we reschedule it for another time.

Days 61 & 62

Miss Sassy K with her cool hat

Not much to report, which is good news around here.  Kennedy has a sassy attitude going on and we’re not sure if it is from the steroids she was on last week or just being completely spoiled.  Whatever the cause is, we’ll deal with it so long as she continues to feel well.  With the upcoming hospital visit, we know that nausea and mouth sores may be on their way so we’re soaking up every second of “good”.

On a side note, I got Gene to go to hot yoga with me today – finally!  We are both feeling pretty calm tonight so it did its job.  Grandma came back from Ireland and visited the kids and they were ecstatic!

This afternoon I was not so calm.  I had a conversation that caused much unneeded stress - apparently I caused this stress but who knows.  As I’ve posted before, we need to be very careful about Kennedy’s visitors.  Much of Gene and my family have not seen Kennedy since she’s been diagnosed because we don’t want to expose her to unnecessary germs.  K’s visitors are limited to kids because if we are going to take the risk of visits, it should be with people her own age that make her happy and heal her spirit.  Because of this, we have asked that many adults that don’t have kids not come to see her until after she is on maintenance (early August).  Well today it blew up in my face.  Apparently I made a long-time family friend feel “bad and hurt” by telling them not to come and visit a week ago.  I didn’t realize I caused this person distress by my request until today and it actually irritates me that this is such a big deal.  Why should I be made to feel bad for not exposing Kennedy to unnecessary visits?  I think sometimes my posts and pictures don’t represent the supervision that is really present with visits (like the massive hand sanitizer, Clorox wipes and even masks at times).  I understand many people love her and want to see her but if they really loved her, why don’t they respect the fact this is serious – it’s cancer and she is at risk for infections that can cause more damage than the chemo?  Anyway, I got the message second hand along with a guilt trip and it set me off.  Enough ranting but ARGGGGHHHH!!!!!

Starting to pack for the hospital.  We have a mile-long list and should finish cooking and gathering by tomorrow evening, just in time for the Thursday admit.  Maddox has a Thursday – Saturday playdate with Anthony (thanks Chris and Angela!).  Anthony lives out in Naperville so words cannot express my gratitude to the Grecos for coming all this way to get Maddox just to hang out.

Next blog should come from Loyola…hoping for an event free stay this time.

Days 59 & 60

K, Dad and Maddox at Starlight Event

Thankfully the effects of the steroid pulse fully wore off on Saturday.  Kennedy woke up happy and was upbeat all day.  It’s amazing how the steroids completely change her personality. 

Saturday evening we went to an event held by Starlight Foundation at Orbit Skate Center.  The foundation arranges entertainment for chronic and seriously ill children and this one was roller skating.  We signed up for it because it was near the house and it seemed like a fun thing for K to do.  K and Maddox had a wonderful time and despite all the leg pain K experienced earlier in the week, she was up and skating nearly the entire time.  For Gene and me, the experience was different.  Looking around at all the children that were disabled, blind, ill or wheel-chair bound made us realize how much our lives had changed.  When we first walked in I wanted to cry; I thought, “this isn’t for us, we don’t have a sick kid”.  But we do.  And those parents probably looked at our puffed up cherub with a big bald spot and thought the same thing, “that poor kid”.  Despite the sadness Gene and I felt, we made the best of it but I’m not sure we can go back.  It’s hard enough dealing with the fact Kennedy has cancer but seeing other ill children, children that won’t be cured in 2.5 years, is just too much to take.  

Even mom skated (I never skate!)

Saturday night I went out to celebrate Kora’s 35^th birthday downtown.  This was the first time I'd been "out-out" in 59 days.  Completely proving my radical social change, I left the house with Stephanie at 7:30 and was home by 11.  I think Gene could hardly control his laughter when I walked in so early – sober.  I tried, I really did, but I just could’t let loose when K is sick.  The tides change too quickly and I feel like I always need to be on guard.  I did drink a little but not enough to catch a buzz.

Sunday was a home day.  Gene made a huge breakfast and pulled out the juicer and juiced everything in sight – it was wonderful.  Kaitlyn came by to play with Kennedy.  I must say I love having such wonderful neighbors.  The girls played for hours and since Kaitlyn is in 4^th grade, I could relax and leave the girls alone knowing K was in good hands.  They put together legos, baked and roller skated/bladed a bit.  Kennedy really let loose and I think Kaitlyn was surprised how un-shy Kennedy could be.  Gene escaped to the gym at 2 and then I checked out to hot yoga (finally) at 4:30 and loved every second.  

K and Kaitlyn hanging out

This week will be a hospital admit.  K will go for her spinal chemo infusion Thursday morning and then get admitted for the 24-hour Methotrexate drip.  Hopefully, we’ll get to go home again on Saturday.  This new rhythm is hard to get used to and it’s sad that it is becoming ordinary for Kennedy.   When we told her that this week is an admit, she shrugged and said “AGAIN???”

I forgot to post some pics of Kennedy and Sofia playing with K's wig and hats with hair so I posted them below.  K wasn't wearing any of it until Sofia found them cool and now of course she loves them.  K tried to wear one of them to the Saturday event but got to hot.  I don't blame her for not wearing them but they are pretty darn cute.

K in Kora's Hair

Sofia and Kennedy modeling the cool hair

Days 56 - 58

I stayed home on Wednesday to stay on top of K’s pain.  We kept the ibuprofen and Tylenol going all day and thankfully had no relapse of Tuesday night. Thursday, dad took K to clinic and celebrated the end of steroids (for now) with a trip to Build-a-Bear and Rainforest Café.  K’s counts are good so she can have play-dates.  Her weight was up 3lbs from last week from the steroids but it should come off before her next round.  She also got a green light to go to a somewhat empty movie theater – which is what we did today.

The pain was intermittent over the last few days.  Last night was probably the worst of it.  Kennedy has been sleeping in our bed so Gene and I have been taking turns sleeping in hers since K is an active kicker.  Last night dad got to sleep with K and she kept him up all night with leg pain.  Thankfully by the morning it was gone.

When dad left, I hopped back into bed with K which is where we stayed until 11am today.  Later Sofia came over and the four of us - Kennedy, Sofia, Maddox and Me went to see the Lorax.  Maddox stayed home from camp today to hang out with mom and plus, he was exhausted from 4 non-stop days of camp and late bed-times.  After the movie, Maddox took a nap, Kennedy and Sofia slept and I did some work.

So far the day has been a good one for Miss. K.  Below are pics from the last few days.  It’s hard to stay on top of posts lately.  I’ve seemed to develop sympathy pains for K and my hands and joints are killing me out of the blue...weird.

Day 55

For a day that started out good, it ended with Kennedy screaming in pain for nearly an hour. 

The back pain that plagued yesterday subsided enough in the morning that we almost forgot about it.  K had an hour play-date with Jackie from 9:30 – 10:30 in the morning.  Gene and I both went to work and I headed downtown to have a lunch meeting with an industry colleague (thanks Erica!).  Throughout the day, K would call me and tell me she was nauseous or had pain but it was all manageable, nothing that lasted or was extreme.  Gala didn’t know about half of the calls but K called me at least 7 times between 12 – 4.  We had a lot of mommy-daughter chats throughout the day.

I got home a little before 5 and gave K some Tylenol and we took a nap together.  When Gene got home, we both got ready to go to a much-needed hot yoga class.  All seemed well so we left K sleeping.  Gala and grandpa were at home to watch her.  When we got to the yoga studio, Gene got a call that K was in severe pain and wouldn’t stop crying so we left before the class even started. 

When we got home, I gave K her meds – Dex (steroid), Ranitidine (stomach) and some Tylenol with Codeine (pain).  She seemed okay; we were massaging her arms and legs and applying ice.   Then all hell broke loose.  She started screaming in pain.  She thought warm water might help so I jumped in the shower with her but the pain didn’t stop so Gene took her out and held her.  She started screaming at the top of her lungs and it didn’t stop for nearly an hour and there was nothing we could do.  Her arms, legs and back hurt.  She couldn’t walk. I guess this was phase 2 of yesterday; all she could do is clench, hold on to Gene and scream.

We paged the doctor who called back to tell us this was all normal.  Really???  Normal???  All the while we were on the phone she heard Kennedy screaming and crying at the top of her lungs.  The only relief she suggested was aspirin.  She noted that the Tylenol with Codeine wasn’t helping the Dex pain, only the Vincristine pain.  The aspirin should help the inflammation caused by the steroid.  We have no children’s ibuprofen in the house because it is normally a no-no with chemo but since her platelets were okay at the last visit, she approved it.  I ran out to CVS while Gene stayed with a screaming K.  I was probably gone 15 minutes and when I came back to the house, she still hadn’t stopped.  It was hell for her, for us.

When she was able to calm down enough to take the ibuprofen, it helped enough to buffer the pain and now things are a bit more normal.  I’m still worried about later tonight and tomorrow, especially after we have to get her the Dex.  She has one more day of this round of steroids and I hate that I have to give it to her.  I asked the doc if it was a must and I was told “yes” – it’s part of the “cure”.  I’m scared for tomorrow if this was the reaction today. 

It’s amazing and terrifying to think we are only on day 55 and there are 857 days of treatment left (my calculation in an earlier post was incorrect).  I hope today was the worst of it.   One day at a time.

Day 54

Today sucked.  Gene and I went to work and got a call from Gala around 11 that K had back pain.  We had Gala massage K’s back for 10 minutes to see if it would help and then by 11:20 had her take some Tylenol.  Nothing helped and the pain seemed to gradually get worse during the day.  We are never sure how to react because at times she gets a flash of pain that lasts 15 minutes and then disappears as quickly as it came.

By 1:20,  K was just miserable.  Dad paged the doctor.  In the meantime we had Gala apply some ice, which alleviated some of the discomfort.  When doc called back, he told Gene this was common from the Vincristine and could also be the Dex.  He asked if she could still walk (I guess this could lead to that???).

I left work at 3:15 to go home and see what I could do.  That damn pit in my stomach rages when she’s in pain.  For her next round of Tylenol, I tried the one with codeine.  We also tried a warm bath.  Eventually, she just passed out.  When she woke up, her eyes were all glassed over and she complained about slight pain but nothing as severe.  Hate codein but it helped tonight.

This evening was more of the same but by 11, she seemed much better.  A full 12 hours of misery for our pumpkin.  The steroids haven’t helped matters because they make her angry and she can be really mean.  Of course I take it personally when I shouldn’t and the pit comes back.  I know she can’t help herself but it still hurts.  Thankfully Maddox was the perfect big brother to her tonight.  He helped where he could and even held her hand to listen to her. He put up with her anger and bossiness very well.

If only today could have been like yesterday.  Cousin Nicole and family came by for brunch and K played the day away.  We even stopped by Jane’s house for a quick playdate at night with Jackie.  All was well – who would have thought things could change so quickly, especially when she didn’t have a treatment or change of meds in days???  Hopefully tomorrow will be better.

Days 51 & 52

Kennedy has not been 100% and we’ve been reminded again about how fragile this treatment makes her.  Her mouth sores have subsided but the last few mornings she’s been pretty nauseated and it takes a lot of coaxing to even get the anti-nausea medication down.   The nausea returns several times a day.

Medicine has also been a pain.  We went from 2 weeks of only 6MP and weekend Bactrin, back to 3-5 meds twice daily.  We added the dex (steroid), along with the ranitidine (it helps her stomach when she’s on the steroid), add that to the weekend doses of bactrim, 6MP and the anti-nausea meds, it’s amazing we can keep it all straight.  This round of steroids really seems to change her personality which complicates things even more when it comes time to convince her to take all of the above.  Thank goodness the steroids end on Wednesday – we’re half way there.

This was my pic for K to prove
I really did get a pokey

I finally got my pokey and made Kennedy happy.  After TRX class today I donated blood at the Y with Life Source.  Although they aren’t my favorite company, the cause was great so I went for it.  This was the first time I donated blood because I have always been a big chicken about needles.  As I went through the process of having my finger poked and giving blood, I thought about all the times Kennedy has been poked and it it made me want to cry.  Thankfully it also made me much stronger about donating.  As I’ve said before, my strength comes from K.

Also showed K that Nicole,
Maya's Mom also got a pokey.

 Kennedy used to take a dance class with a little girl named Maya. Her mom Nicole, who takes TRX with me, also donated for the first time.  I knew it wasn't her thing, especially since she is planning on running an 8k tomorrow and she had both of her little ones with her, but she did it anyway.   I didn't ask but I knew she did it for K.

Lastly, I resolved my BCBS issue on Friday.  After the Thursday call with the insurance company, I contacted the supervisor of the girl I spoke with and asked to have a caseworker assigned to me that has children so she could be more sensitive to my situation.  Lucky me, the same girl called me back to apologize and then asked a ton of questions about K's height and weight, type of meds she was taking, etc.  She told me her purpose was to help me through the process.  When she was done asking me questions, I asked her where I was at in meeting my deductible for out of pocket expenses and she had no clue but said we could call customer service together.  Back to the beginning, what is the purpose of this again?

The insurance liaison from Loyola also called on Friday later in the day after Megan (the Child Life Specialist) read my blog and told her about my situation.  She told me I do not have to talk to the BCBS case worker and that she handles all pre-approval insurance matters and will help me with my insurance needs if any arise.  What a relief.  Now I can avoid those crazy calls and worry about more important things, like K.