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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Vava’s Official Diagnosis – Monday 4/2

Vava’s oncology team met with us late this morning to let us know that they had met with the pathologists and have collectively arrived at an official diagnosis of Hodgkin’s Lymphoma. Vava will start her first course of chemotherapy this evening. We expect to remain in the hospital through this week, though we may go home sooner or later than that depending on how Vava does in the coming days.

V is in surgery at this moment receiving a new semi-permanent I.V. line through which she will receive her initial chemo treatments.

Getting the diagnosis is of course a relief… knowing is better than wondering for sure. It is quite strange to feel relieved by the news that our daughter has this disease, and even stranger to be excited by the fact that Vava can start receiving these powerful, cell-killing poisons, but here we are. We are also keenly aware that this journey of treatment and cure is only just beginning as of tonight. The coming months are going to be tough and full of their own uncertainties, difficulties and discoveries. But we are ready to get going and help Vava every step of the way. We are grateful to have all of you behind and with us as we move forward.

Love,

Marty & Ki

Update from Marty, Sunday Night, 4/1/07

We are still in limbo for the moment, diagnosis-wise, with the prevailing but not definitive opinion being that Vava has Hodgkin’s Lymphoma. Our team of doctors and pathologists will either be able to arrive at a final determination any minute now based on workups to date, V’s overall clinical picture and any new findings from their continued analysis of tissue samples already harvested, OR they will need to get more tissue to try to find the telltale Reed-Stenberg cell so they can achieve great enough certainty that this is in fact Hodgkin’s Lymphoma. The thinking is that a third biopsy, if needed would be the charm. Should they decide to undertake it, this next excavation (as they call it) will be much more invasive so will require anesthesia (due to needing a much larger sample than has been extracted by the previous two needle biopsies), and putting V all the way under is a serious matter because her airway is already compromised by the tumor, and anesthesia stops the body’s automatic breathing mechanisms. We are very much hoping to learn in the morning (Monday, 4/2) whether they can go ahead and make a diagnosis and get us started on chemo, or will need to do the bigger-deal biopsy. If getting it EXACTLY right means we need to wait some more and/or undergo more procedures, we’ll take it, of course.

On the hospital social front, V had a big day today with Auntie El who stepped in to give Ki and I some time together away from the hospital. El brought Vava presents and played with her, hung out, played host to visiting friends and family and played April Fool’s tricks on the nurses. Sweet. Thanks El!! Aunt Valerie was also on hand (as ever), helping with basically everything. Vava visited with cousins Nate, Sara, Crystal, Janice and Saul, and friends Lisa, Ani, Lilly, Jessica, Josh and Stephen. On Saturday, V had visits from Lulu, Rosie, Jane, Glen, Lee and again with her pal Jessica who came with Lori. Sorry if I missed anyone!

Stand by for news of either diagnosis or more hunting…

Marty

A day with the V-girl

I just spent the day with Vava and her two wonderful friends, Ani and Lily, plus Ani's mom Lisa. The girls gave Va a real lift, from hanging out watching "What Not to Wear" to a trip to the nearly abandoned cafeteria for chips and soda. Cousins stopped by too: Elizabeth, Nate & Sara, Janice, Saul, & Crystal, April and her parents. And Jessica and her family came too. Everyone wants Vava and Ki and Marty to know how much they love them, and they want to help.

Vava is so smart, she knows what questions to ask the nurses about the equipment, her potential surgery prospects, whether she has to keep the IV on or can make do with drinking more liquids.

V had a chance to talk on the phone with some other friends, and with her Granny and Gramps who are heading over to see her soon.

As hard as all this is, Va and her parents are surrounded by great friends, family members, and folks from V's school who love them.

I left her looking so pretty, a little tired from all the company but happy to have had her girlfriends nearby and to have gotten some good "loot" from all her visitors!