An Interview with Sevigny

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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
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Movin’ On

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

A Christmas Miracle: Sevi Update

  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! ūüĆ≤

 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!

Sevi’s Update: December 19, 2015

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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.

How Sevi is Changing
In the last eight or nine days, Sevi started losing her hair. It’s…unbelievable. You can’t quite tell if you’re not looking for it, but tufts of hair are definitely falling out. She is still as beautiful as she was in July! Her spirit, her sense of caring, and her fun heart are positively contagious. Her muscles are very weak–she’s been falling a lot. We have to carry her to the bathroom, and now we have a wheelchair for her to use. She started have nosebleeds last week–in fact, she was up all night with them. This is concerning for a child with cancer because it means her blood cells are low. That’s an awful lot of changes for a previously hyperactive 8-year-old soccer player.
Treatment Changes
This week, we had a conference with her medical team to discuss her prognosis–how she is doing. Their recent tests tell us that¬†her cancer is still visible on blood tests–this means the treatment isn’t¬†eradicating the cancer as anticipated….
So, Sevi is having all these diagnostic tests done:
  • 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.

Lumbar-Puncture-Web

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.

How You Can Help

You sweet people keep asking how you can help.

Here is your answer!Helping-Out-Hunger-LA

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.

When it rains, it floods.

Our apartment flooded today.

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True story. This calm Sunday morning, our neighbor’s hot water tank exploded and they filled up with¬†inches of water in their apartment (yikes!). Because our bedroom¬†shares a wall with them, our bedroom is also flooded. Two weeks after our child got diagnosed with cancer. Ugh.

Our mattress and storage items and many of my clothes are soaked, including some family heirlooms. Some are damaged. I’m sick to my stomach.

We have renter’s insurance, which is great to replace some items. But, the real kicker is that we will have to move. They need to replace the carpet–obviously. But, our oncologist told us that replacing the carpet will uproot so many spores that it will compromise Sevi’s immune system. Since she is already so weak, the carpet replacement will make her sick.

We are staying in a hotel tonight (and maybe tomorrow), and working furiously with the apartment complex to see if they have an empty apartment we can move in to. We may have to move to a completely different apartment building. We’re trying to make the hotel stay a “vacation” for the girls, but it’s just so stressful….

When it rains, it pours…

–Brittany

How You Can Help

Can anyone spare some time to do research to find a good, affordable moving company in Denver? If so, say yes in the comment box.

Also, is anyone in the Denver area a realtor who would be willing to donate time ASAP to help us find a new place?

 

 

 

What this blog means to us

Welcome to the Super Sevi blog! 

Sevigny will beat this because she is a real life super woman and she is AMAZING. Please follow our blog to support our Super Sevi–save it as a bookmark! You can join or follow our family through this battle with cancer. We will post updates about Sevigny’s health issues and how she is feeling week to week. We have already received incredible support from close family and friends, and it is time to become an inspiration to others and put this out in the open. We are not the only family that this has happened to and we are very fortunate to have Sevi still with us. Please keep us in your thoughts and send all the love and positive vibes you can muster our way. Hopefully our family can be an inspiration to others that are going through this or that have gone through cancer themselves. Thank you all for taking the time to read this.

We love you all.

— The Park Family —

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Brittany and our three girls on a hike near our home in Denver.

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Patrick with our newest addition, Rowan Willow Park.