superseviblog

Hello everybody, Sevi here and I’m back!

A few weeks ago I broke my wrist it hurt so bad I had to get a cast on. It’s been on for one week. I’ve been going to the library for a little while it’s really fun you can rent books and movies! Mean while I met a new friend Evie. She’s fun,  playful, and nice just like my other Bff Isabella.

Bye for now!

New plan cancel Vampires At Dusk and talk about real matters let’s start with life problems, dreams, and questions. For me I’ve got problems you don’t  even want to know about as for my life dream I want to be the most famous and well known pop star in the world! I know I know pretty big dream for a girl only 9 years old but I believe if you set your heart to it you can do anything! Then’s there’s my big life question hmm … that’s a toughie I’ve got to say it’s What’s the meaning of life? So that’s it Bye for now!

Hi everyone Sevi here I just started school and I really like my new school I like reading groups, lunch/recess, drama, and i- ready lessens. I really like my teacher Mrs Sanchez and the school nurse Miss Lea.

Hello Super Sevi Supporters,

This is Patrick aka “Sevi’s Dad”, hijacking her blog real quick, to share some important news related to her. For the past five years , I’ve created abstract electronic music, and have been fortunate to see it released in places like the UK, Finland, and now Portugal, on very limited runs on cassette and vinyl.

In an attempt at healing and understanding the madness of the situation, I turned to making music. The result was two companion albums, Master Generator and Songs for Healing. Both of these albums are dedicated to Sevigny.

Master Generator was just released in a very special limited edition CD package out of the Bay Area by Time Released Sound. All of their profits will be donated to the local Denver non-profit charity, the Creston J. Walker Foundation, who helped us tremendously last year when we first found out about Sevi’s diagnosis.

Partial proceeds from my sales will also be donated to the foundation. The chrome companion of Master Generator was also just released by A Giant Fern out of Portugal, both physical items can be purchased directly from me here. Songs for Healing will also be released on limited edition cassette this Fall on These Are Not Records.

Please note: I’m still waiting for my tapes to arrive from Portugal so there might be a slight delay in shipping.

Please check out the music below and support a good cause!

Dear people out there,                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                     My name is Sevigny Aslin Park, you may have heard of me on my Super Sevi Blog. I haven’t written any thing on my blog yet which I think is weird… I mean what’s the idea of having a blog if you don’t write anything yourself am I right or am I am I right? I’m what some people call a reading nerd or geek but I like to be called a… how do I say… Super Reading Sconce Kid! I don’t hide in the shadows or act like a teasing bully. I am a smart, playful, strong, cool 9 year old girl who loves any kind of pet and wants to be a animal vet when I grow up. I love meeting kids who are sweet, caring, nice, loves animals, soccer, reading, sconce, learning, loves horses, and camp stuff. I also like riding horses and taking care of hurt animals. I have a big happy family, a 30 year old dad, 29 year old mom, 5 year old sister and a 9 month baby sister who can be really annoying and loud but she’s family and I love my family.

I go to the hospital a lot every week and it really sucks. I hate cancer and diseases like it. This blog is my side of the story of cancer and the only person I want to tell it is me Sevigny Park and every part of it is true. It all started a few weeks before Halloween, I started having problems breathing and keeping up with dad on walks, one of my favorite things to do with him. Me and my family only thought it was just muscle aches or asthma  my mom thought so too. So we all listened  to her because mom is a master muscle person. But a week after Halloween I had to go to the doctor’s office on a school day at 12.00! It was the weirdest thing ever! I had to go to the hospital that night and  I had to stay at a hospital for a whole week until the doctor’s found out I had cancer. A few weeks after my hair fell out we had to shave my head or else we would have  an apartment full of hair. A week later our apartment flooded and we had to move to a cute little house in a cool little neighborhood. The neighborhood is like a damp swamp when it’s raining I think it’s really cool. I’m really into scary stuff like Goosebumps and Haunting Hour so I’m looking for new friends who like to read, write, and sing but I get along with everyone! Unless there bullies I hate bullies!

Well I’m thinking of writing a scary book for kids but I won’t be drawling the cover and it’s not going to be a silly picture book, it’s going to be a chapter book, so sorry picture lovers!

Bye for now!

Hi again it’s me Sevigny I want to give you a little book trailer from my new book Vampires At Dusk enjoy!

Once upon a time vampires roamed the night looking for blood. I Gabby Drone am doing all I can to keep my family safe from those blood suckers. It’s getting harder and harder to protect my family that’s why i’m training myself to get strong. I didn’t know  that when I was out at the store a vampire had broken into my house and bit my whole family who turned into vampires! I got bitten by my little sister who said she wanted a hug so I turned into a vampire too. We went hunting for blood for the first time we could not catch a human so we drank raccoon blood.

Well that’s it for now kids see you next time to read the whole story!

Below is a Q&A with Sevigny Aislin Park, herself. We asked her questions, she answered. She gave the people what they wanted!

How do you like to spend your time?

Reading or playing!

What surprised you in the last month?

Staying in the hospital on mom’s birthday

Can you tell us what it’s like to get chemo?

Sometimes, it makes me dizzy or sleep. Other times, it tastes weird and makes me thirsty and it’s cold.

What has been the hardest part of living with cancer?

Everything is hard about cancer. I can’t tell which part is harder.

What has been your happiest moment recently and why?

Having a playdate with my friend, Gabby, and finding out we are going to Disneyland and staying there for a week! (We are going to Disneyland through the Make a Wish Foundation in November 2016).

What do you want to tell your friends and family who are thinking about you?

I will not give up and I will kill this cancer.

Love,

Sevigny

Hi all, We’ve been silent on the blog for a bit because things have been so hectic. Balancing three kids (one of them a teething infant monster, one of them sick with cancer), jobs, and a new city has been tough. I wanted to share a bit of good news:

Last week, we found out that Sevi’s body is responding to the more aggressive cancer treatment! Her labs show that the cancer is undetectable. This does not mean she is cancer-free or in remission, just that the treatment is working as it was intended. FINALLY!

Otherwise, no changes. She is still on track for chemo for the next 2-3 years. This past week, she has been admitted to the hospital (a scheduled admission) so she can be treated with a very toxic chemotherapy drug. Did you know there are cancer drugs so toxic that people can’t be around others when they are on them? What?! Crazy, huh? She gets admitted for four days, stays here all day and night, and gets this medicine. Then, when it’s out of her system, she can come home (tomorrow).

Patrick and I have been taking shifts going to the hospital. And he is still working! A real father superhero! It’s still pretty hard with all the kids and Rowan teething and not sleeping through the night. It’s a real stressor for us all. Sevi is such a big girl though, she stays by herself at night at the hospital and does just fine. She’s growing up, in a weird, unexpected sort of way.

That’s all for now. Thanks for all the help and support. We continue to want and need your texts/ calls/ letters showing support during this time.

Today’s update is mostly about medicine–the good and the bad.

Sevigny goes to chemotherapy each week on Fridays–she is now a “Friday girl.” Each Friday, we go to the hospital, not knowing whether it will be 2-hour routine stuff or an 8-hour marathon, complete with anesthesia, blood draws, and demon-in-a-blessing’s-clothes chemotherapy. We’re always nervous on Friday, and the anxiety starts the Thursday night before. This last Friday, we had reason to be nervous.

In case you have not been following, Sevigny’s leukemia has not responded completely to the first course of chemotherapy treatment. Her risk level went from standard to high. Although the survival rate for ALL (her type of leukemia) is 85% overall, she had a higher chance of surviving when she was first diagnosed.

Now, her chances for survival have lowered to somewhere around 85%, which has warranted the use of more aggressive, dangerous drugs.

This last Friday, Sevigny received her first course of asparaginase–one of the more aggressive chemotherapy drugs used to treat leukemia. This medicine, which could save Sevi’s life, has some terrible side effects–so nasty that we cried when we first found out she needed the drug. Some side effects include inflammation of her pancreas, and loss of fertility. It’s weird to think about my 8-year-old daughter and her fertility, but that’s what cancer does to a parent.

Sevi experienced the first (and most common side effect): she was allergic to the medicine. I’m not talking itchy skin allergic. She received it via IV, so there was no turning back. Immediately, she screamed at the top of her lungs, her breathing slowed, her skin turned into one big giant hive, and she started kicking the nurses away because she was in so much pain. Her doctors used an epipen right away to help her stabilize, but she had to be admitted to the ICU overnight. It was a very scary night, not knowing if she would be okay, not being able to stay with her (our baby, Rowan, is not allowed on the ICU–no babies are). We feel so helpless sometimes.

Since then, Sevigny has returned home safe and sound. She still needs that darned drug, though, so the doctors prepared it differently and will give her two injections of it every Monday, Wednesday, and Friday this week and next week. We have to be with her. Yesterday was the first dose, and she did not have any allergic response! We are so, so thankful. Still nervous about tomorrow (Wednesday), but things are slightly improving.

Sevigny’s 9th birthday is February 7. We will be updating our wish list with some birthday gifts for Sevigny. We really want to take this good news about the injection and keep the momentum going for our sweet 9 year old! Hopefully, pictures will follow.

Until then, thank you for reading and being with us. Sevigny would love to hear from you–blog, call parents, or letters.

We moved. 

Finally finally finally, we moved! 

 

Sevi & her youngest sister, Rowan, in her new bed

If you’ve been following along, you’ll know our apartment was flooded in December and that, because any environmental irritants can trigger Sevi’s weak immune system, we could not keep living in our apartment even if they cleaned it. We basically lived in a hotel for two weeks, and then back to our apartment that wasn’t good for Sevi, but we couldn’t afford another option. On December 31, though, we moved! 

Our new rental is a house instead of an apartment, and has enough bedrooms for Sevi to have her own (that’s a special requirement during active treatment, to minimize contact with other germs and such and allow her to rest easily). 

Our new address is updated on the Contact Information page (click to the three little lines on the top of this webpage), so it will be there forever. 

If you need a fix right now, though, here’s the address: 
3483 S Glencoe St.

Denver CO 80222

It’s been one hell of a month–Sevi sick and hospitalized, her chemo treatment became more aggressive (another post for another time), Patrick went back to work, our 5 month old started teething (!), Christmas came and went in a less than usual way for us, and we moved in the middle of negotiating lots of financial hurdles. Week by week, though, we’ve been receiving your gifts, your donations at the YouCaring page, and the support of several nonprofit agencies in Denver.(click the How You Can Help link on this webpage for more info). For example, one agency hired movers for us–an incredible act of kindness. 

And week by week, we are moving on.

  
Our middle one, Zuri, as the tiger she is, in our new home

  Christmas Day 2015

 Hi all, Eva here–family friend of the Park Family. My title carries a touch of the dramatic. There is no wild Christmas miracle. Sweet Sevi is still battling an invasive disease.  But I do write with a positive update on behalf of Sevi.

The past week, Zuri and Brittany caught a cold (daycare brings such great treasures). Then, Sevi caught the bug. Because her immune system is compromised due to chemotherapy, a cold for Sevi is a lot more than a cold.

She had a fever of 102.3 for over 24 hours, so she was admitted to the hospital for observation. Her medical team performed a blood transfusion. And then, all her labs stabilized and she was doing ok! In fact, she was able to have her regularly scheduled chemo (the more aggressive kind, see last post to get caught up). And, she was able to go home Christmas Eve! 🌲

 For the next two weeks, her chemo drugs will be more aggressive and each Wednesday, she will undergo anesthesia and also have a lumbar puncture so her oncologists can analyze cells in her spinal fluid to check her progress. Can you believe it all? For an 8 year old? What a brave young girl!

Sevi is big sister to this wild animal, Zuri (who is a great sous chef!).

As you can see, Sevigny joined the hairless trio with her dad and youngest sis, Rowan (thanks newborn baby baldness). Her hair had begun to fall out in chunks due to chemo, so she took the plunge and shaved it. One of her many new changes. 

I hope the rest of you are having a wonderful holiday. Let us practice gratefulness for our health and our loved ones and ourselves. 

As a Christmas gift to Sevi, what is one thing you wish for her (big or small) before next Christmas? 

She loves having a website, so let’s give her something awesome to read!

Sevigny as big sister when Rowan, our littlest, was born in July.

Hello to all you wonderful and caring folks. This is an update on Sevi’s health.

Our beautiful, caring firstborn has been going through a lot of physical changes recently. The cancer treatment, as expected, is about as rough as the diagnosis itself.

• bone marrow biopsy–to look at the cancer cells more closely to see if her risk level has changed.
• blood and fluids drawn
• lumbar puncture–they withdraw spinal fluid to get a better look at her cells. Here is a drawing of what it looks like for a child.

What’s Next?

All the tests showed that the cancer is not responding as well as expected. Sevi’s chances of being cured from this horrible disease went from 91% to 85% this week. These are still good chances, but we’re scared.

So, the doctors and we have agreed to make her treatment more aggressive. She will start new chemotherapy meds (who knew there were so many?).

And an even darker side of this drab coin is that the new medications have the potential to have terrible side effects later in life for Sevi–ones that affect her reproductive system, her menstrual cycle, and possibly her ability to have children.

I had no idea all this was coming. We can barely process it all and carry on with our regular lives. It’s not our regular lives, though. Some things are falling back into normal routine, but nothing feels normal.

Thank you all for your support to remind of us of the people out there thinking and helping us. We need it.

You sweet people keep asking how you can help.

Here is your answer!

Most of you know Sevi and our girls (Zuri age 4 and Rowan age 3 months) and if you don’t, my family and I are open to your support. Unfortunately, as veterans of the U.S. Air Force, Patrick and I have literally been to war and seen horrific things. But nothing could prepare us when our first born got cancer. Right now, our family needs all of the survival skills and nurturing skills we have cultivated throughout our lives to go to war with this cancer! — Brittany Park

THINGS WE NEED

*Click on the links to go to the website.

• Your time. We could really use people to help us with babysitting (so my husband and I can go out and be alone for once during this crazy process), or volunteering to help with household tasks–grocery store runs, helping us organize our house, ecetera. E-mail Eva.

• Purchase things from our wish list. Some of the items may seem odd, but this whole experience is odd. We are surprised that Sevi’s diagnosis has impacted our ability to stay in our apartment, what household cleaner we use, and what we eat. But, it has. These are the main things we need!

• If you are able and willing, you can make a financial donation for unexpected expenses related to Sevi’s diagnosis. We will keep our blog or donation page updated with how we use the money.

• Right now, we have too many toys (seriously). Our house is overflowing with toys because people have been sending tons. So, for now, no more toys, please.

• Massage oils–Brittany, a licensed massage therapist, has been giving Sevi and Patrick massages to help relieve stress and improve the effect of treatment. We need mild, unscented oils like this jojoba oil or this almond oil.

• Gift cards for living essentials and home goods–we have to replace several things to keep things cleaner or protected since Sevi’s immune system is down. We can get what we need from Amazon, Target, Ikea, Overstock, Walmart, or Target.

• Headwear for Sevi as she loses her hair from chemo. Sevi has started losing her hair and all she wants is “La La Loopsy” wigs or very fun and colorful wigs. Sevi also requested cotton material, soft material, and things that are beautiful. A great company to purchase from is Love Your Melon, who provides cancer research support and hats to children battling cancer. Or, something like this chic, soft beanie.

• Mountain Herb Rose gift cards–We need herbal and aromatherapy products for complementary medicine for Sevi and chemical-free products.

• Sevi loves to read REAL paper books (she is old school) there are a lot of books that she is into at the moment on our Registry –Even though Sevi is 8 years old, she is really advancing in her reading level and will begin a homeschool/tutor regimen soon, thanks to her awesome school!

• Healthy gluten-free meals. We’re still trying to pick up the normal pieces of our life, and we need to eat. We all eat gluten-free, and appreciate any frozen meals, snacks, or deliveries. For example, a subscription to hellofresh.com.