Week 8 of 22 Down... Week 9 Coming Up!

Sorry for lagging on updates!  There's definitely plenty to catch you up on :)  We went in to our October 14th appointment knowing that the docs were going to change her meds.  Her liver couldn't tolerate the Dactinomyacin which was one of the reasons she ended up back in the hospital a few weeks ago so we were switched to Doxirubicin.  It's considered a "heavier" type of chemo and, although it's a very common chemo for Wilms tumor patients, we were initially glad she didn't have to have because of the side effects.  This new chemo potentially brings heart issues down the line. Cardiomyopathy being the most common but doesn't show up till later in life. Cardiomyopathy is where the heart becomes thicker and harder which weakens it causing it unable to pump as much blood throughout the body. This sounds scary but we were told that the dose as well as the total amount she will be given it isn't much of a concern, however, they always end with... "we can't say for sure."  So, moving forward it will be the Doxirubicin and the Vinchristine.

Port access hasn't change.... she hates it.  Even still, she seemed fine leaving the hospital and joked around with DaddyMax while waiting for our car.

The standard nausea medicine, Zofran, hasn't seemed to really work for her so they added Ativan before the chemo.  The side effects kept her pretty lethargic and sleepy to the point she had trouble walking out of the hospital but once we got her home and into our bed she rested and slept.

Saturday came and she seemed ok aside from the standard complaint of stomach pain so I thought I would try to the Zofran again just so she wasn't so drugged and sleepy.  Her appetite was the best it had been since starting the chemo although this proved to be a double edged sword because she made it till about 1 o'clock in the morning when the vomit started.  It was intense!  I'm talking out of her mouth and nose and ALL OVER EVERYTHING.  It was all over her mattress next to ours, her pillows, her blankets, me, our comforter, the carpet, she even managed to get it all over the cords next to my bed (which took me forever to get clean later). Poor baby... she felt so awful. I got her to our bathroom and grabbed her vomit bucket.  I have the worlds worst gag reflex so as she sat on the toilet with her bucket while Max took over so I could avoid spewing everywhere.

We got her clean, put her in our bed and Max stripped her mattress and pillows and took it all down to the washer. (have I mentioned how amazing my husband is??)  We comforted baby girl and we all fell asleep.  How Jet slept through this I'll never know!  It hit again around 3am and again at 5am but thankfully she made it to the toilet both times.  The decision was made to go back to the Ativan  and she slept most of Sunday and by that evening she seemed much better.

Her favorite place when sick...In DaddyMax's arms.. He just holds her till she feels better..

Even with all of that going on we had Jet's birthday Saturday night while Liv stayed at our house with Grandma for a few hours  just playing cards and doing projects. (We're SO thankful my mom is awesome and lives a mile away)  We took Jet and most of his soccer team bowling.  They had an absolute BLAST.  We are really fortunate to have a great group of parents and kids on Jet's soccer team.  Kids and adults alike bowled, had treats and I think Jet enjoyed the focus on him for a few hours.  Can't believe my little baby is 10!!

Aunt Brandy came through with an epic piñata!

Wednesday was his actual birthday and my best friend Christy flew in from AZ while another Key West Alum, Amy, drove down from LA so that they could both spoiled the kids. Amy makes these most amazingly beautiful dream catchers which the kids loved and have hanging in their rooms.  Christy, in true Christy fashion, spoiled them both and bought a zillion balloons and cupcakes and gifts. I'm so thankful they both made such effort to be with me and our family. I love you both!! (Carrie you were there in spirit!)

I've been so touched by people that I haven't seen in decades.  My friend Paul, who I haven't seen since high school in Key West, has been exceptionally generous in supporting Liv's GoFundMe fundraiser.  Thank you Paul for your love and support!  Liv and Jet got a super cool and custom Key West surprise from another friend I haven't seen since high school.  Sibba- thank you for being so thoughtful and kind!  Another KW Conch sent Liv Blu some super soft outfits from the brand LuLaRoe- I had never heard of this before but now will be a loyal shopper- the softest, comfiest, cutest clothes ever and with her body being super sensitive, the material is so perfect for her. Thank you Donnie :-)  Key West has always held a special place in my heart and although I was there just under 5 years, it will always be my home.  The people are amazing and we stick together.

Never happy waking for chemo morning but having a fat cat like Raphie to jump on her bed certainly helps :-)

Sometimes I wake up, see her, and I don't recognize her.  She isn't ready to shave the rest of her hair and we are ok with that. Whatever works for her ;-)  She has a few moles on her head which I don't think she likes although to us she is just perfect.

Her friday chemo this past week was only the one med and overall she did REALLY well. I'm so thrilled. Some headaches and upset tummy but no throwing up. She's had a few really good days at school and is in good spirits.

When they access her port the smell makes her sick so they have these yummy smelling lip-glosses they let the kids put inside their masks to help.  Little Blu thought it would be nice if they had other flavors/scents so we bought some, made a special box to keep in the chemo clinic, and donated it.  Liv, with her big heart, was happy to do something nice for the other kids. :-)

This friday is another 'easy' dose so I am hoping she breezes through without feeling to bad. She is getting more tired and needs to rest a little more. They say chemo is accumulative so while she may look ok and not seem all that sick, her body is still processing the poison in her body and it's still affecting her cells.  We continue to make sure that she is eating enough and really, just chilling out when home.

Her amazing teacher Mrs. Wallace continues to send cards from the class. Liv isn't even registered in her class because technically she has homeschooling yet Mrs. Wallace continues to treat Liv like one of the kids to make her feel normal and a part of the class. She is amazing this is one of the main reasons I think Liv is doing so well. The social aspect and her love of learning is so key and getting to go half days when she feels well makes my mommy heart so happy and thankful.

A note from her good friend Elsa (who clearly loves Pandas) :-)

Thank you everyone for sending her love! I know I am forgetting people to thank... sorry!  We'll try to be better at keeping this thing updated.  Until next time I leave you with a quote from Liv today after we picked her up from school.  She got in the car with some hand written notes she had jotted down on some scratch paper with facts about venomous snakes.  One of the facts that she "found super interesting" was that scientists believe that some venoms could hold a cure for cancer.  Max, always encouraging her to be whatever she can dream, suggested that she may grow up to be one of the scientists to make this happen.  Her response was priceless; "Well  I know I don't like having cancer... I'm pretty sure nobody likes having cancer... so, I might as well try to cure it!"  God knows she's got a good shot at it!