Two Words

From Vava:

Uh-duh!

I'm Done With Treatment--4EVA!

HEY EVERYONE! This is vava here! I just wanted to tell ya’ll that i am officially done with treatment forever! ;):):) HERES A TON OF PICS! :):):)

Cancer-Free!

V B Cancer Free!

Pet scan negatory on the rapidly dividing cells, and Vava is cancer free, she sees the radiologist next Thursday and off on another adventure in medicine. Thanks for all your support, we are our own planet of hope and gratitude!

She went off to the TOPS dance tonight ready to rock out in her new black patent ballet flats filled with attitude and joy. Hallelujah!

Ki

Update from Ki

Vava is in her last round of chemo, and going strong. She does get sick about two weeks in; bad pain in ankles, elbows..as her counts drop, she feels like she has the flu....but a day or two goes by and she is better....

On Oct. 18th she will have a PET scan, and on the 19th another long day at the hospital where she will be checked out completely (Echo, ECG, lungs, Xray, etc) and the oncologist will give us the results. We, and they, are assuming she will be cancer free. The following week she has a little surgery to remove the port in her chest which was used to deliver the chemo all these months, then the radiation begins. We still don’t know how long.....

Vava is very excited that the Make a Wish people came to visit last night....her wish is very elaborate and exciting...they told her they can’t guarantee anything, and asked what her 2nd choice would be....which is also totally cool...so we’ll see. It’s so wonderful for her to have this little titillation going along with the rest of the slog......

Sometimes I wish I could go to sleep and wake up next year.

Ki

Vava's Hair!!!

BEFORE YOU KNOW IT – I'LL BE ABLE TO PUT IT IN BRAIDS!

HEY EVERYONE!!!!!!!!!!! Look at all my hair!

From Vava!

From Vava!!!

Hi everyone!!!!!!!!!!!!!!!!!!!!!!!!!!

This is Vava speaking!!!!!!!!!!!!!!!!!!

WELL, considering I haven’t posted anything on the blog….EVER… I thought I should!


First off I’d like to say that I’M DOING FANTASIC!!!!!!!!!!!!!!!! I’m feeling energetic and upbeat as usual!
My next chemo cycle is on the 4th of September for 8 hours. As always, I’m not looking forward to it, but it is kind of exciting because it is my 2nd to last cycle! YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


O. M. G. I’m SOOOOOOOOOOOOO excited for school to start! I’ll be in the 7th grade!

I have had a very fun summer…. but I miss school.

This picture is one I took with my new laptop!

THANK YOU ALL SOOO MUCH FOR THE LOVE AND SUPPORT! IM GETTING THROUGH CHEMO AND I KNOW I WILL CONQUER RADIATION! I COULDN’T DO IT WITHOUT ALL THE LOVE AND SUPPORT FROM MY FAMILY AND FRIENDS! THANK YOU!!!!!!!!!!!!!!!!!!!!!!!! =)

~Vavs

The latest from Ki

Hi friends and family,

Sorry it's been so long.

Vava's halfway PET and CT scans came back with the news that "60-80% of cancer is gone-partial very good response to chemotherapy". When we spoke with the oncologist, she reported it was more on the 80% side, the tumor was mostly gone, there were no longer nodes below the diaphragm showing cancer.

This means no radiation below the diaphragm, which is great news for her, her ovaries and us. She will have radiation above, which is a drag....there were still nodes in the neck and above the clavicle that showed cancer.

So on we go with the chemo.

Vava is off to Camp Goodtimes on Vashon Island early August, which is the same camp she has been to the last 4 years, but for two weeks each summer it becomes a cancer kids camp staffed with docs and nurses who do the pills, etc. Which, frankly, will be a fabulous break for us. So many pills, changing doses, etc,....did I tell you how I OD'ed her on pain meds once?
Oh yeah, THAT was traumatic.

Vava has heard much about the camp, and is most excited about having a whipped cream fight and then being sprayed with firehoses by the local firemen. Yeah, that does sound good. Kinky, but good.

The worst thing about this journey at this point is that it is not over.

The novelty has worn off, and the routine remains. Vava doesn't like the 'puffiness' from the steroids, she has more problems with pain; stomach, mouth, legs & feet. There are weird side effects like certain muscles in the feet don't work, so sometimes her feet drag....Endless appointments, OMG, endless. But the chemo protocol has changed; instead of chemo for 15 days every three weeks, it's moved to 4 weeks, so in that breather week we get to play more. We went camping up in Port Townsend, and will go on a 4 day Cascade Mountain Loop soon. Wahoo!
Vava is growing the cutest white fuzzy hair right now! Maybe she'll be a blonde!

Thanks for thinking of us.

Lopez Bike Marathon-From Ki

Power girl Vava! This is a picture of the girls on the Ferry to Lopez for the Lance Armstrong Bike Trip. See how excited she looks? Those are dollar signs glinting in her eyes! Vava herself raised over $700!
Vava rode on the back of a tandem for 21 miles, and then rode another 4 by herself! She is feeling mighty MIGHTY! Pay up, everyone! We will be in touch!
We started Round 4 on Saturday. We are at the hospital all weekend and Monday too. She was a little bit sick today, but then felt pretty good.
There will be another restaging at the end of this round. We are hoping to see NO TUMOR! NO CANCER! Keep your positive health groove vibes going!

Blood donations make a big difference!

A note from Ki

Vava got her first blood transfusion yesterday.

The day before, she and I attempted to ride bikes to her school to get in shape for her marathon. We got a block from home and Vava stopped, suddenly huffing and saying, "I think I am having an asthma attack, I can't breathe".

When we went in for scheduled labs that day and told our NP what happened, the numbers came back to prove that what she told us was right: "We often have to give teens a transfusion at this point because when their counts are this low, their blood is not able to carry enough oxygen for them."

Getting a transfusion takes hours, 5 in our case. Just sitting there, watching the blood drip into her and seeing her color go from pasty to glowing was amazing. Boring for her....but she felt so much better.

Vava was worried the blood might give her AIDS, and we asked the nurse about this. The blood they use at Children's comes from volunteer donors only. No one is paid for it. It is all heavily screened and tested. There have been no transfusions causing AIDSor other serious infections from blood since the 80's in Seattle.

What this made me realize is that I need to give blood, and I am asking you all, if you can, to do the same. If you could see how it helped our girl, and realize how it is helping other people suffering through chemo like this, you would be so gratified. The hospital doesn't let people give blood to their own children. It's a much more democratic process, which makes the whole blood-donation business even more significant. You are helping us directly by giving your good healthy blood to the Puget Sound Blood Center.

They have centers for donation in north Seattle and Downtown. Their site is:
http://www.psbc.org/home/index.htm

The bike trip benefiting the Lance Armstrong Cancer Foundation starts next Wednesday on Lopez. This blood is going to make it possible for her to join her classmates on the trip. She has already received donations and per-mile pledges for over $500. She is hoping to bike 25 miles. If you want to get on her list, call us!

Vava hangs with her cousins

We shared a wonderful evening with Vava as the family celebrated a belated Mother's Day. We are so happy to see how strong Vava looks and feels after three rounds of chemo. Here's a pic of Vava with her cousins Crystal and Louise!

From Marty and Ki

Vava had new CT scans on Wednesday that show the tumor has been, as the
oncologist said, "dramatically reduced". The chemo is working. We are in
round 3, with 5 more to go after that. Because she was reassigned to 3b status (advanced rather than intermediate status) we think we don't get to dodge the radiation bullet. She didn't bounce back quite are easily this last round of chemo, but she is eating well and was able to go to two days of school this week. She is doing homework, playing Xbox, reading, and being her usual girl-wonder self.

We thank all of you who have continued to call about meals. We aren't needing that help right now; save your culinary delights for later on in the summer. We anticipate as Vava gets sicker from chemo, it will be a break for all of us not to have to cook and fill the house with food aromas. So thanks, and later!

Ki & Marty

Vava and Ani Share the Hair

Ever the trendsetters, Ani and Vava demonstrate the new vogue of "hair sharing."

From Ki

Vava had surgery this morning to install the port in her chest that will be the access for the chemo from now on. She's sore, was pretty grumpy about how "unfair" it all is. But she ate a bunch of potato chips and felt much better. She wants more.

We are in the hospital overnight recovering, starting round 2 of chemo.

She will get out tomorrow afternoon, but come back again Saturday for another chemo infusion.
She received a sweet package from Aunt Marilyn today. The card depicted a sweet cat in three stages: hanging from a tree by one paw, pulling itself up, and finally supported by a branch. Vava took a look at this sequence and said " that's like getting sick, getting stronger and getting well".

Thanks Marilyn.

From Ki

When Vava's hair started falling out a few days ago, she didn't like it. Her scalp was itchy and stingy. Last night she demanded we shave her head.
That was a scene. Here she is, in all her baldie-waldie.
She has been to school the last two days. She is very happy to be back with her buds. She says she "is not even tired"!
Wow!
Ki

From Marty and Ki

Since Wednesday, when she had the Neulasta shot (which helps rebuild your white blood cells), Vava has had an amazing resurgence of energy. She is completely her old self, except for the IV hanging from her arm. It's wonderful and unnerving, like maybe this cancer diagnosis really is just a bad dream....

We are hoping that after lab tests on Monday Vava will even get to go to school this week, if only until she gets tired. The following week she starts round 2.
So this is apparently how it will go; chemo, sickness, recovery, start again, until October. We realize the chemo has some cumulative effects, and that the "sick" times may last longer and the rebounds be less dramatic.

But the whole process is gradually becoming less horrifying.

We are grateful for your support, and ask that you consider giving support through donations to Children's Hospital and to any and all cancer research (something like 85% of all cancer researchers applying for funding get rejected by the government). Many of the parents and kids we meet in the oncology clinic and inpatient facility at the hospital don't have the kind of extended family and friends network we are so fortunate to possess.

Much love and hope from Ki and Marty

From Ki

Before we get any further down the road of fabulous meals, I'd like to say thank you SO MUCH to the chefs who have brightened our dreary days in the hospital and since we've been home: Joanie's yummy chicken and OMG cocoanut cake, Gwen for her delicious lamb stew and smuggled wine and beers, Jackie's rib eye steak and grilled veggies-I thought I died and went to heaven and more smuggled wine, Dan and Colleen oh yeah picnic paradise and MORE wine, Loretta and Gerard Easter action and lots of presents, Joy, who cooked up the most glorious 3 layer pecan cake with a technicolor salad and a crazy pie/meat thing that we HOGGED, Virginia and Brad Italians DO IT so good pasta and chocolate mousse, Elizabeth: lunches and Macrina treats again and again, Ellen and Michael for Indian Lamb and pappadums that rocked the house...Gwen again and again....

Really, I am not writing this to intimidate anyone, but it has been DAMN good! Am I fat...er? And your cooking has been really helpful, as I am still in rehearsal. The show opens May 10 and then I will be FREE to be a full time mom and caregiver.

Thank you again. Your love kindness is helping us so much....Vava just finished round 1...we are waiting for the hair to go. She is in pretty good spirits, all things considered. And she continues to crack lots of jokes and laugh! Oh, her glorious laugh!

Again, Thanks.

Ki

There's no place like home

A visit with Vava & co. on the afternoon of her return found everyone greatly relieved to be home again. Vava's room was ready and waiting and the day was topped off with a yummy meal provided by Colleen and Dan. You could just feel the family sinking into the warm familiarity of hearth and home.

Family contingents drove over from Spokane and up from Portland for the weekend, and in addition to the usual suspects from Seattle, Vava visited with her Aunts Nancy and Mary, cousins Lisa and Sam, and Grandma Janice. Grandpa King couldn't make the trip but his prayers fly over the mountains daily.

Marty and Ki are deeply grateful for the meals people have provided, but they cannot always determine how the day will go, thus whether they'll be ready to use the provided meal on a given evening. So-we're now asking that if you are on the dinner schedule, please prepare and package your meal so that it may be frozen and used later if needed. (You may bring your meal frozen if you like.) Of further note: Vava's immune system is compromised, so if you have illness in your household, please do not prepare a meal for her until everyone is healthy again. In any event, super-clean hands and containers (disposable) are essential!

Free at last!

Vava was released from hospital at 4 this afternoon! The whole family is greatly relieved to be home. Vava and Marty passed a difficult previous night, as they were inexplicably moved (after all previous days/nights in a private room) into a shared room with a 17 year old methadone (read "withdrawl") patient and her less than socially skilled boyfriend. Perhaps the hospital has a program for soon-to-be-released patients which makes them more than happy to be sprung on their last day? It's hard to imagine why this happened after a stellar record of previous remarkable care and right in the middle of Vava's first round of chemo, but it did lend support to the "let's get out of here!" idea.

The day before V was discharged a group of pals from SGS visited and and staged an adorable routine for her. Everyone has been so impressed with the genuine care and support shown by Vava's friends and their families.

Now the routine is in-home treatment, out-patient treatment at the clinic at Children's, and hopefully inpatient stays will be seldom to none. This said, home care and treatment will be demanding (both technically and emotionally), and the family will continue to need our support with meal deliveries, yard maintenance, errands, etc. Check the support calendar and let us know how you'd like to participate. I think I speak for everyone when I say how lucky I feel to be part of Vava's Village.

Hurry Up & Wait (some more) from Marty 4/3/07

We started the chemo course back up this morning but ran into the same allergic reaction problem as the night before, even though many precautions had been taken. So the treatment team, in consultation with a local leading expert in the field of Hodgkin’s Lymphoma treatments, has come up with a new chemo regimen and as of tonight, we have a new treatment roadmap made of a different set of drugs that the team will begin to administer in the morning and over the next few days. This new chemo strategy will play out over the course of the next six months. We are now thinking we may get sprung from the hospital sometime during the weekend.

Vava had quite a day, starting with getting her braces removed to reduce mouth irritation during chemo – see the before, during and after pics!

We also had the pleasure of brief but lovely visits from Aunt Valerie and Uncle Scott, Uncle Denny, cousin Elizabeth and nurse Kate who was our nurse when we were first admitted here almost two weeks ago now. Aunt Mary Ellen drove up from Portland where she happened to be for some physical therapy work with Te… ME spent several hours with us before having to head back down to Oregon, and we got in some good conversation, dice, scenic tours of the hospital, a HAIRCUT and a beautiful and delicious dinner prepared, delivered and served by Aunt Joanie who pulled off an accidental Jackie O impersonation via her big sunglasses.

Our angelic friend Kim appeared and gave Vava the most darling haircut right here in the hospital room. Ever had your vital signs taken while having your locks snipped? V has! The hospital staff can’t get over how sophisticated, grown up and beautiful V looks with her new ‘do. V’s spirits really lifted once she had a shower and saw just how fantastic her new look is. Photos will be provided only after certain locals have viewed the new coif firsthand… we wouldn’t want to spoil the surprise, now would we?

Vava is ready to get going for real with the chemo and knows that difficult, intense, unpleasant and strange times are in store. She tells us she can do it, and we absolutely believe her!

Update from Marty Monday Night, 4/2/07

Vava started her first “course” of chemotherapy this evening but the treatment was halted when she had an allergic reaction to one of the drugs. The plan is to start the series back up tomorrow (Tues) once a strategy is in place to administer preventative meds to mitigate any reactions going forward. V is fine and sleeping peacefully as I write this, and all vital signs are A-OK.

Meantime, V got a bounteous care package from Aunt Mary today which she rifled through with gusto and delight. There were presents in there for Ki and me too, which we will have no problem enjoying. Thanks Mary!! Gwen brought lunch in the nick of time for a fast-food fix that was somehow just exactly the right complement, and then stayed for a fragment of Monopoly, which is the only amount of Monopoly that can be “enjoyed” in a setting like this. Ian stopped by in the evening and administered some laughter medicine along with a light-up, oinking miniature pig that V has flashed at the medical staff to great effect, and the fabulous Jackie dropped off a most elaborate and stunningly delicious dinner for Ki and me that we ate like not-so-miniature pigs. Uncle Scott had brought some much anticipated hum bow just for V earlier in the evening that she wolfed down with steroidal enthusiasm. Valerie was here much of the day as she almost always is, helping, bolstering, guiding and problem-solving.

Here’s to getting started on the decimation of the disease!

Marty

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