Day 21

Written by daddy Gene:

Full good day at home.  We were all happy to be sleeping in our own beds, finally! We bought a baby monitor so I could hear her all night.

I had to administer antibiotics at 6 am so mom could sleep before work.  I looked forward to going back to bed but I got the wakeup call at 7:15 am, “I am hungry!!!  Daddy you promised you were going to make a special breakfast”.  I promised to make Mickey Mouse pancakes with M & M’s the night before in yet another conversation about food.  The promise was fulfilled and both kids were eating pancakes by 7:45.  Mom grabbed one on the way out the door too.

Kennedy was feeling good all day, but needed to take a few naps to recharge.  The challenge was again to ensure she did not over eat. She is constantly hungry because of the steroids that she takes.  I went to the store and got organic chicken and our nanny made a fabulous soup.  Getting Kennedy to eat meat is sometimes a challenge but Kennedy liked the soup it so much she ate 3 bowls.

In the afternoon we built a dollhouse together for hours and Kennedy played dress up with a new hat and glasses.  Molly came by to help Maddox with homework and said “hi” to Kennedy.  I noticed Kennedy was very insecure about her “baby” hair (as she calls it) but thankfully Molly is great with her and told her how beautiful she looked.  Molly will be tutoring Kennedy while she is out of school.  We are lucky to have her since both kids adore her.

Mom came home and took Maddox to wrestling and went to work out.  Grandma came by to visit.  Today was an uneventful day, which is a good thing.

Before bed, Kennedy had a meltdown when she was brushing her teeth.  She hates her hair and wants to shave it off now.  I don’t feel so great about it but mom thinks it’s ok.  We will sleep on it and see how Kennedy feels tomorrow.  

Day 20

We’re home J

The morning went well except K was a little bit crabby.  I guess that’s to be expected with all the steroids they are pumping into her.  We knew today MAY be the day we would go home but I wasn’t holding my breath.  I kept feeling her head every 5 minutes waiting for the heat but thankfully it never came.  Again, I didn’t get my hopes up so I didn’t pack but instead pushed Kennedy into the playroom for some dollhouse action and a little arts and crafts.  Of course I made her wear a surgical mask the whole time (germaphobe mom on the loose).

Got a frantic call from Gene this morning too.  Apparently he was all ready to go to work in his car, (that’s why his dad drove him home from the hospital last night) but I had the only pair of keys in my purse (at the hospital).  He was not too happy with me.  Thankfully grandpa came to the house and let Gene have his car for the day.  I am lucky to be alive after that one!!! 

Around 11am we got the news, we could go home – woo hoo.  I ran back to the room and packed up everything fast.  We accumulated a ton of stuff over 7 days but I managed to clean house in about 10 minutes.  The social worker arranged for the pharmacy to drop off the antibiotics we would be administering through the port and also said they arranged a nurse to come to the house.  The antibiotics were due at 1 but she could get them as late as 3pm to stay on doc’s scheudle.  To say we were elated is an understatement. Texted Gene too and I am assuming he did a happy dance.

We got home around 12 and the antibiotics arrived around 1:30.  At 2 I started wondering…where is that nurse?  Thankfully I took the number down for Reli-a-care (or something like that) and made a call.  They had NO CLUE of what I was talking about.  Finally, Doris, our nurse, called me back.  Apparently they knew they were going to take care of us but never got the confirmation call that we were released.  Doris got to the house around 2:45 and trained me how to administer Cefepime through the port.  

We need 2 flushes, 1 antibiotic and 1 heparin syringe for each dose.  The antibiotic is administered over 10 minutes at 1ml each minute every 8 hours, around the clock. With a flush before and after and concludes with the heparin.  The dose was prescribed for 10 days, which is much longer than Dr. Manera told us (he said 2 weeks, starting with admittance date).  If the 10 additional days is correct, she will need her port de-accessed and re-accessed at clinic on Friday, which will mean another pokey for K (yikes!!!). 

Kennedy is happy to be home and came home to a ton of packages.  She was thrilled.  Maddox was so excited, he was showing off one of his new hats (a swim cap that dad bought him).  He got all dressed in his swimwear to model his new head-piece.  Kennedy also modeled some great new hats tonight from friends and neighbors (thanks!!!).  She is happy to have them but doesn’t feel a need for them quite yet as she still has some hair that is hanging on.

Kennedy had a bath for the first time in 20 days.  It was a quick one since we have to be cautious of the port.  We also put her earrings back in.  Everything has to be done so cautiously so I dipped both of her ears and earrings in alcohol and wore gloves and a mask to put them in.  She’s happy.  Dad administered her port antibiotics tonight.  I’m sure a picture of us would have made everyone laugh.  We both had gloves and masks on and were sterilizing everything.  All the while, Kennedy was munching on string cheese.

I work tomorrow.  Dad and Kennedy will hang out at home and Maddox will be back at school.  It feels great to be home with the family – it’s the most normal night we’ve had in a long time.

Day 19

Spent my first night alone last night.  Dad spent the night with K in the hospital and Maddox slept over at his buddy Jake’s house (thank you Todd and Laura).  I thought I’d enjoy “me” time but it was awful.  I did everything and anything to keep myself busy, starting with making Kennedy cupcakes to decorate and ending with researching the causes of non-bacterial, febrile neutropenia online with Cousin Nicole.  Thankfully Nicole is a pediatrician and can help decipher reality with my flashes of madness.   After I did everything I could to distract myself, I cried myself to sleep like a baby. 

I’ve tried so hard to not say, “it’s not fair” because it isn’t fair.  It isn’t fair that Kennedy has to go through this pain and suffering and can’t have fun and go to school like a typical 4 year old.  It’s not fair that Maddox hurts because he misses us so much.  It’s not fair that Gene and I have to dance with cancer for the third time in our lives.  No one said life is fair.  On the upside, it is fair that she is still here for us to hold and love.  Sometimes seeing the glass half full is hard but we can’t take it for granted – ever.

Gene said the day was good.  Dad and Kennedy made a Red Riding Hood book in the playroom (we’ve watched Hoodwinked way too many times this weekend).  They also played and ate a lot.  Maddox spent the day with Gina and Cannon at the movies (thanks Marci for everything!).  I went to work.

Cousin Nicole and I made up a list of questions for Gene to ask the infectious disease doc and we all won a small battle.  Kennedy will not need to have blood drawn from a separate site if she has reoccurring fevers during one hospital stay.  One poke at admission is fine and subsequent days after that, they will draw from the port first. Only if that comes back positive for bacteria growth will they need to do a pokey.  YAY!!!!!  Both doctors also told Gene that Kennedy’s counts looked better today – her WBC, Hemoglobin and platelets went up.  We MAY even be able to go home tomorrow.  I’m not holding my breath about this but I will celebrate the counts.  

 

I got to the hospital around 6ish and we decorated cupcakes with our teenage next door neighbor Nick who is here for chemo.  Of course we all wore masks, including Kennedy.  Grandpa came to pick up Gene and take him home; just in case we really do get to go home tomorrow I will have a car here.  Keep those fingers crossed that whatever virus is causing the fevers is gone, gone, gone so we can go home.

Thank you to all that have sent stuff for the kids and apologies if I have not addressed this before – it is appreciated and so kind.  Thank you from all of us.

Day 18 (morning)

FEVER!

We woke up happy and had a ginormous breakfast.  Right after her meds, her face started getting red, she complained of a headache and she was cold.  100.7 and 100.9 which means another peripheral blood draw.  K flipped, screaming “no more pokey”.  It’s is heart wrenching.  Our nurse came in and said that they had to draw right away to catch the fever.  I said absolutely not without the numbing cream (buys us an hour).  I won this battle but lost the battle to have the blood drawn only from her port.  Seriously, they just drew blood from her hand less than 48 hours ago but they said it is only good for 24 hours without another poke.  Of course K had no fever in 24 hours!  I don’t know if it was her drinking my water or the access and deaccess of the port yesterday or the walks in the hallway, or the food, or the….neutropenia.  It could be anything.  I want to scream!

Outside of pokey, this means another 48 hour sentence and it is killing her cute little spirit.  She needs to be home!

Day 17

Some people are so ignorant.

Last night before bed, I had Kennedy accompany me to the Bear Necessities lounge for her late night snack.  In the lounge was a lady that noticed Kennedy’s hair and asked what she had.  I said…”she has Leukemia, but don’t worry, the hair loss means she’s beating it”, (probably more for Kennedy’s sake than mine).  She goes…”Oh, my friend’s son had that but they lost him”.  Really?  Did she really say that?  So I responded back, “ALL has a 90% cure rate so I’m not too worried.  Sorry about your friend”.  What I really wanted to say was “F-you, how dare you say that?”  What is wrong with people?  This isn’t the first time either.  When one of my vendors found out about Kennedy; he said he was sorry and went on to say he just lost his mom from cancer so he understands.  Again, really?  Enough time on ignorance…

Kennedy woke up feeling okay but after her nap she felt sick.  She had pain behind her left knee when she walked, abdominal pain and some nausea.  She was HOT.  Gene took her temp with our thermometer and got a 38.1 – CRAP!!!!  But when we called the nurse, their thermometer read 99.7 – THANK YOU GD!

Thanks to a suggestion from a new friend we met through the Child Life specialist, Kennedy will be getting a Build-A-Bear every time she gets a pokey.  We built our first one last night online.  Friends take up stock…we will be investing weekly when her port is accessed.  After they had to de-access and re-access the port this afternoon, low and behold, we built another.

Cousin Nicole came by today with some hats – K looked adorable.  I also got a full 20 minutes at the Loyola gym, it helped to get out for a bit.  Dad let me borrow his gym shoes since I didn’t bring any – a little big but not too bad.

Grandma brought Maddox for a visit and my germaphobia nearly did me in.  Wow – boys are definitely gross.  I had Maddox sanitize at least 10 times because of his hands in his mouth or other parts of his face.  I feel so bad making him crazy but he really needs to make a change for the family or we will be in the hospital for fevers a lot over the next 2 years.  I witnessed a big oops of my own today when I saw Kennedy grab my water bottle and take a chug of it instead of her own.  I grabbed it immediately and made her rinse with mouthwash. I am praying we won’t see a fever because of it tomorrow!

 

 Dad took Maddox out for dinner and went home with him to get prepared for his wrestling meet tomorrow.  Kennedy, Grandma and Mom hung out for the rest of the evening and I got my first hair cut, compliments of Kennedy.  I still owe her one more so I will be going a bit shorter.  Who cares, it’s just hair…it will grow back for both mom and K.

Day 16

Frustration.

Damn cancer.  We have been sentenced to a minimum of 48 more hours of hospital time which is starting to feel like jail time.  Kennedy spiked a fever of 100.8 right before chemo and only 2-hours before our scheduled release time.  It cam from out of nowhere – neutropenic fevers suck because often they are not associated with any bacteria and sometimes are just a contaminate.  Kennedy has no immune system so any little germ can set off a fever.  Fevers also mean “pokeys”.  Pokeys mean trauma.

Gene was at the hospital with her today and had a really hard time with it.  Kennedy cried on his shoulder for about 10 minutes before she passed out from exhaustion when he told her about the pokey.  During her nap, she sweated out the fever and woke up to a normal temp.  This was very good but didn’t save her from pokey.  The nurse put some numbing cream on but it didn’t work.  It took 4 nurses to hold her down to take her blood. 

Of course we are racking our brains of how she got sick and I choose to blame the infectious disease doc and the 2 residents that accompanied him just 24 hours earlier.  They did not wear gloves or masks.  I questioned this but the doc said they wash their hands and use sanitizer and that is enough.  I figured I should trust the fearless leader of the group since infectious disease is his specialty and why would he jeapordize her health?  I winced as one of the residents was being over touchy and bending over her but figured they knew what they were doing.  That won’t happen again – ever.  Gene posted a sign saying “masks and gloves, please” on her door today.

 

Hair was a big topic today and Kennedy is convinced that the hair that is falling out is bad cancer hair (thank goodness the power of suggestion works on her).  She is excited to get rid of it and wanted to pull more out and cut more.  She wore a hat and a scarf tonight and looked adorable.  Kora went and chopped her beautiful long locks to donate to Kennedy.  Words cannot express our gratitude for that kind of gift but THANK YOU!  Kennedy was so excited when she saw Kora’s picture, she asked if she could have her “underhair” tomorrow.  I told her she’d have it in two weeks. Kennedy will give me my hair cut by the end of the weekend.  I hoping for a bob and not a pixie cut.

Gene and Kennedy spent the rest of the day playing.  Dad even let her put art paint on his face, that was until it started burning.  Not sure acrylic paints should be applied to skin.

Maddox is disappointed his sister won’t be coming home just yet but we made plans for him.  He is all set with a weekend at grandmas, a wrestling meet on Sunday followed by a sleepover at Jake’s and a movie date with Gina and Cannon on Monday.  Hopefully by the time he comes home on Monday, Kennedy will be home!

Side note:  Thank you Brian for changing Kennedy's home blog picture and making this a happy place to visit!!

Day 15 (only 809 days to go)

We get to go home tomorrow!

Last night was a typical night with Kennedy – up every two hours for a feeding, like a newborn.  Each time a tech or nurse would come in to administer antibiotics or get vitals, Kennedy would pop up and say “I’m hungry”.  Her stomach is huge and hard.  It looks very uncomfortable but that doesn’t stop her.  Each time (like every 40 minutes) Kennedy wanted to eat during the day, I made her walk down the hallway to the Bear Necessities room that housed the refrigerator so she could get a little exercise. 

We did a lot of arts and crafts today to keep her distracted. We also started working on thank you notes for all the generous gifts.  I’m exhausted just thinking about getting them to all the wonderful people in our lives.  

A lot more hair fell out today, it’s about half gone.  I’m surprised at how quickly it is happening and K is upset.  She keeps saying “But mom, everyone is going to think I’m a boy in a dress”.  I told her that was nonsense.  We would get her some fancy earrings, a cool scarf or wig and she can even wear make-up if that will make her happy.  She immediately put on the hat Christina knitted for her when Dad brought it this evening.

Kora is getting her hair cut tomorrow and we found a place online (hatswithhair.com) that will create an “underhair” that Kennedy can wear with hats or scarves and wouldn’t be as hot or itchy as a full wig.  I doubt she will wear it all the time but it would be perfect for a birthday party or anywhere she’s not 100 percent comfortable.  Options are good.

Infectious disease doctors came in and noted they were happy with her progress.  Dr. Manera also came in and said she was ready to go after tomorrow’s chemo.  We can’t wait to get her home.  A home nurse will be by to set up the IV administration of the antibiotics.  Right now she is getting the drugs every 6 hours.  Kennedy will receive one more blood transfusion this evening to make sure her counts are ok to go home.  Her hemoglobin was around 7.

Gene and I had a changing of the guard at around 7:30pm.  He could already see the changes from yesterday (puffier cheeks and less hair).  It’s hard to watch her change right in front of our eyes, I wonder how Maddox will react. 

Speaking of Maddox…I came home to a wonderful surprise.  Maddox wrote us a note (based on the blog he was helping me write the other night).  I asked if I could post it and he said "yes.

Written by Maddox:

Dear family

My sister is in the hospital.  I got a little sick to.  I’m home from school.  It is not fun being sick.  My mom is going sleep at home like my dad did last night.  To day I saw a cool movie it had sord fighting and that movie had soss in it.  My sister will be home tommoaow.  I miss my mom and dad.  Thank you God for making my little sister get out of the hospidle.  I love you Kennedy.  My grandpa called today and said that Kennedy was fealing good.

Your friend Maddox