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.

Days 49 and 50

Waiting for Chemo

Kennedy was doing great the past few days until the nausea and mouth sores took over.  I’m not sure if the nausea is a lasting effect of the hospital stay or if it is the 6mp pill.  The mouth sores are definitely a side effect from the stay and should subside in the next few days.  Doc called in some Tylenol with Codein and a Lidocain rinse, the latter has been a big help.

Finally finishing up.

Today was clinic.  Kennedy’s counts were 1,900 - a great level, especially considering the intense chemo.  She is not neutropenic and may avoid neutropenia completely during this course of treatment – YAY!!!!  My only complaint of today’s clinic visit with the length of time we were there.  We got there at 9ish and didn’t walk out until 12:40.  Over three hours for a 15-minute chemo drip!!!  I recently learned this is standard so we will plan our clinic days accordingly.

After clinic, Kennedy and I went to Build-A-Bear, Rainforest Café and did a little shopping for her.  It was a great Mom and K day.

"Pokey" my new dog-bear
and his friend

I did have a meltdown today right before clinic.  Blue Cross Blue Shield called yesterday and left a message to call back (no details).  Of course, my mind started racing about all the treatment they wouldn’t cover – all in my head.  When I returned the call, the caseworker that called me had a voicemail that said she was out of the office until April 5!  I left a message and a different (very young) caseworker called me this morning as I was running late to clinic and trying to park the car. 

I never would have answered but I was so concerned about the reason for their call, that I immediately picked-up – BIG MISTAKE.  The first question was IF I wanted a case-worker assigned to us.  I was told it wasn’t mandatory but I was getting the feeling I should accept, so I did.  She said she was calling about K’s history of Leukemia – “history of Leukemia???”.  I noted that if history means from February 2 – than okay.  She went on to tell me that she would call me every week (lucky me) to discuss her treatment.  I told her that her treatment is a pretty standard protocol so I wasn’t quite sure what we would discuss and if it was necessary.  So as I was trying to get Gene’s big beast of a car into a spot – running 15 minutes late, she proceeded to tell me that I would need to contact them with all procedures that would be more major, like tests.  I told her that the hospital has done that in the past and I often don’t know what is considered major.  She said, “well it is your responsibility to inform us to make sure the treatment is covered”.  Did I miss something? All of a sudden I was getting a lecture?  So I said, “Listen, I can’t talk – I’m late to clinic, I’m trying to park the car”.  So she said “I’ll wait”.  OMG!  So finally, as I am in tears – I told her I will do my best, I need to get my kid inside and she may be adding a psych evaluation to her list of about to be covered testing.  So she told me she would be calling me next week. 

Is it really necessary for BCBS to torture the insured every week?  Do I need to talk to this insensitive 20 year old?  I’m fearful if I reject a caseworker it may cause more issues.  I’m going through enough and getting a weekly lecture about something I haven’t done wrong is completely unnecessary.  Just blogging about it gets my blood boiling again.

When I got of the phone, K asked me why I was crying.  I just said that moms get sad too sometimes and people are ignorant.  She then went on to remind of the three times she saw me cry - thanks Kennedy :)

2011 November - before cancer

I put this album together today from our family photo session in November 2011.  It's strange looking back and seeing our life so normal just a few months ago.

Click here to view this photo book larger

Days 47 & 48

K and Gala before I left for work

The last two days we’ve been at work and Kennedy has spent the days with Gala.  Things have been mostly uneventful but she has had some nausea and developed mouth sores from the chemo; nothing a little Zofran and Tylenol can’t cure.

After work we’ve been keeping busy.  On Monday we baked and tonight our neighbors (Kaitlyn, Gina and Cannon) came by to play with K and Maddox outside.  Kennedy is on cloud nine playing with the older girls and they are so good with her.  We are definitely lucky to live by such wonderful people.

It seems that the whole neighborhood is going on spring break.  It’s interesting to think that if K didn’t get sick, Gene and I would be in Oahu right now and the kids would be shuffled between Grandma and Gala.  The thought of ever leaving them now (or ever in the future for that matter) doesn’t even seem like it will be on the table again.  It’s not that I don’t think that K will get well and all will be fine, it’s just that I can’t imagine ever being far away from them again.

Gina, K and Kaitlyn

Life certainly is different and different isn’t bad.  It’s bad Kennedy has cancer but it isn’t bad that we reprioritized how we live.  We finally slowed down and have time to appreciate things more. 

Today I appreciated some “me time”.  Instead of running straight home, I stopped at a store and bought the family some stuff.  Nothing we really needed but I just needed to take a break between work and home to regroup.  Although I love coming home to the children, I needed a moment to exhale and reboot so I can stay positive and prepare for entertaining them.  Laying down on the couch and watching TV is no longer on the table.

Thursday is clinic and the start of a 7-day steroid run.  I’m not quite sure how I’m going to keep K from eating for the 2 hours before and 2 hours after her 6MP pill since her appetite will be surging.  Any ideas???  Middle of the night maybe?  Not looking forward to the return of the eating machine.