Day 23

A good day.

Kennedy before clinic

Outside of waiting a little longer today and me freaking out about being in a pediatric waiting room full of germs, clinic was GREAT!  Dr. Manera was out and his associate Dr. Hemminway saw K.  No platelets or transfusions needed and the antibiotics were stopped (so no re-accessing the port).  In addition, her blood counts were up (ANC is now at 400) but she is still severely neutropenic* .   I’ve used the word a lot so figured I’d define it below.

She received her Vincristine chemo and we were done.  My biggest concern of the four hours was Kennedy being scared about having the sticky removed from around her accessed port and not having enough food to satisfy her.  Thankfully, the nurse let Kennedy remove the saranwrap-like sticker herself and we had just enough food to keep her from going crazy. 

The rest of the day was uneventful. Kennedy took a nap when she got home and played with  Maddox most of the evening.  I walked half way down the stairs to the basement to check on them and heard Maddox sweetly saying “I understand, you’re always hungry”.  Apparently, Kennedy was filling his ears with conversations about food.

Kennedy usually has some nausea after the Vincrisine but lucky for her, nothing yet.  Here is to celebrating no pokeys, better blood counts and togetherness.

*Neutropenia (noo-troe-PEE-nee-uh) is an abnormally low count of neutrophils, white blood cells that help your immune system fight off infections, particularly of bacteria and fungi. You have several types of white blood cells, and between 45 and 70 percent of all white blood cells are neutrophils.

The threshold for defining neutropenia varies slightly from one medical practice to another. Neutropenia in adults is generally defined as a count of 1,700 or fewer neutrophils per microliter of blood. The cell count indicating neutropenia in children varies with age.

The lower your neutrophil count, the more vulnerable you are to infectious diseases. If you have severe neutropenia — fewer than about 500 cells per microliter of blood — bacteria normally present in your mouth and digestive tract can cause infections.

Day 22

Had a great mommy/daughter day at home.  We started the day by making sugar free cupcakes and decorating them.  We played Barbies, did some art projects and ate a lot!  Kennedy’s girlfriend Sofia came by for an hour.   

Listening to her talk to her girlfriend made me realize how much K thinks about food AND how much she’s grown up in only 22 days.  K has been with adults so often she is starting to sound like one.  

All four of K's build-a-bears that she built in the hospital arrived today.  Kennedy was ecstatic.   I’m thinking we will be ordering another one tomorrow  after clinic. 

Molly came over to help K with some pre-K projects.  I thought I had to prepare a lesson plan but Molly had me beat.  She came with a packet of shapes and site words – thanks Molly.  After they were done, Molly spent some time playing build-a-bears with both K and Maddox.

Tomorrow is another mommy/daughter day and a chemo day.  It is also the day we find out if they need to de/re-access her port for more days of home administered antibiotics.  I prepped K for the Pokey just in case.  We also packed a ton of food and crafts (just in case her counts are low and needs blood or platelets). 

Hoping for an easy day at clinic tomorrow, no pokey and another fabulous day with my sweet girl.

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.