Message from Marty, Friday, 3/30, 6pm

Vava had two new imaging studies today, as well as her daily chest x-ray. The doctors met with us afterward to explain that they still can’t declare a 100% certain diagnosis. They continue to believe in the Hodgkin’s Lymphoma conclusion, but the pathologists are not yet satisfied and are apparently sending their data off to the National Cancer Institute for an outside opinion. Not sure when we will hear back on that. So, the medical team does not want to start chemo yet, and we may not be starting until next week at this point. The imaging studies showed some “hot spots” in lymph nodes in V’s neck, in addition to the mass in her chest. The doctors feel that if it is safe (as determined by the surgeons), they want to extract a larger tissue sample from one “hot” lymph node in order to hopefully achieve diagnostic certainty. The possibility that some tissue might be extracted from the chest mass itself has also been discussed. This course of invasive surgery may occur early next week, depending on further study and discussions with the medical team. In the meantime, steroids are being administered (technically one aspect of chemotherapy) in order to try to shrink the mass so that V can breathe easier, be more comfortable and be in better shape to undergo anesthesia and surgery should that path be deemed ultimately necessary.

Vava looks more pale today, but is generally more robust. Jackie brought a lovely lunch (including a yummy vanilla shake at V’s request) and read and played with V all morning. Vava and I went for a walk around the ward and she is maintaining acceptable blood oxygenation levels without the aid of an oxygen line. Bottom line: we continue to monitor, wait, take update meetings with doctors, wait, get more tests, and, well, wait.

More as soon as we know more.

Marty

Message from Marty, late Thursday night (3/29)

Our doctors met with us this evening to let us know that based on extensive pathology tests and several other workups, they are now officially 99.9% certain that Vava’s diagnosis is indeed Hodgkin’s Lymphoma, however they are going to do some additional pathology tests tomorrow (Friday, 3/30) to try to attain 100% certainty. We also have another imaging study slated for tomorrow to look for any signs of disease in other parts of her body. Tests have confirmed that there is no cancer in her bone marrow, which is a huge relief. We expect that Vava’s chemotherapy will begin tomorrow and that we will be in the hospital through next week or so. The initial treatment overview they have given us is a 4-course chemotherapy regimen over the course of 16 weeks, followed by radiation therapy. Here we go.

Our floor is still in lockdown due to a recent virus outbreak, but Vava was once again allowed to make a brief trip out of the ward to see her aunties (who gave her a fabulous, huge teddy bear… sorry, pics are in the camera which went home for the night), and her dear friend Ani (who happened to stop by while V was out and about), who gave her lots of hugs and kisses which really cheered V up.

We expect the visitation ban (for all healthy visitors) to be lifted soon… once we can have visits, we will need to figure out how to somehow schedule/coordinate so that we can balance quality time with everyone who wants to come (and Vava wants to see you!!), with enough rest/quiet time for V.

Vava is holding up well and seems to be preparing herself well mentally for the weeks to come. If any kid can soldier through this, our Vava can!

Your support means so much to us. Please keep us close in your thoughts!

Best,

Marty

Message from Ki 3/29

TO all:
Vava received so many balloons in the past few days, so enough already on those for awhile.
We are just sittin' here waiting....hope to know today.
Thank you all so much.
Vava was very happy yesterday: no procedures.
Just a heads up: if you are sick, and feel that you should wear a mask to protect Vava when visitng, you should NOT visit. The minute anyone comes in here wearing a mask, the hospital puts us on 5 FIVE days of isolation. We can't go out of the room, be in the halls, etc. This is because so many kids here just had transplants, are very delicate, etc....
It's very touchy here. We are dying to see everyone, and Vava really wants to see her school pals. Yesterday we put her in a chair and hauled her and equipment out into the air. Her friends Ani and Jessica came, and there was bliss for 1/2 an hour.

Vava is eating very little. 1/4 of a bagel or a few sips of smoothie. The only things she ate with gusto were Gwen's crab salad, Jackie's meatballs and angelhair, and Ezells chicken.
We have an area with a refrig, microwave, paper plates etc.....
Ok. Back to waiting.

Love,
ki

Visit by Denny, Thursday A.M. 3/29

I dropped by this morning, just after 8 a.m., to see how the night went for Vava and for Val, who spent the night in the hospital, to give Marty and Ki a break (Everything went fine). Vava was pretty awake & very chipper. She was able to get out of the ward last night, via wheelchair, and meet with a lot of her friends, which was great. Unfortunately, the ward is STILL quarantined, which makes it pretty iffy for visiting (you can do it if you get lucky -- sometimes the staff doesn't seem to care or notice -- but since there really are good reasons for the quarantine, I wouldn't advise it).

But there was NO NEWS YET from the biopsy. I had hoped to relay some to everyone. I probably won't be able to get back there later today -- but maybe someone else will be able to find out, and put something up here on the site. She's still coughing like a two-pack-a-day mine worker, but that will probably be the case until they start the treatment and get this chest mass to shrink. There will also be chest xrays taken later today which will say something about any changes.

Anyway -- I AM happy to report that Vava's breathing seems really good this morning. When I left she was out of bed and sitting in the chair.

Denny

Visit by Denny on 3/28

Hi Gang --

Stopped by late this afternoon to visit Vava. Ki was washing Vava's hair -- very complicated when you're in bed, hooked up to a bunch of stuff. It was pretty cool, though, the way Ki set it up, with some kind of basin under Vava's head, Ki using a pitcher and warm water from the tap, the basin draining into a container to catch the water afterwards. Amazing how practical things can get done if you're methodical enough.

Vava is in a new room, a MUCH bigger one. One of the walls is practically filled with cards already, and there are a whole bunch of cool balloons in there. Vava got a great framed picture from King and Jan today of a lot of the family, taken at Priest Lake sometime in the past, and Vava had me put it up on a shelf where she can see it easily.

As you may already have heard from Joan's e-mail, there weren't any results yet from Tuesday's biopsy. The doctor came by while I was there, and explained that "no news was good news" with this biopsy so far -- if they had gotten an early anomalous result, that would have said they were on the wrong track. They do expect to get conclusive results of the biopsy tomorrow, and that should indicate the next steps in treatment.

Marty arrived with some fried chicken, and afterwards Vava was going to be allowed (we hoped) to go in the wheelchair outside of the ward (which is STILL quarantined) to visit with some of her friends from school.

That's it for now. Oh, Vava and I discovered a mutual interest in trying to solve WHERE'S WALDO books. It's definitely a handicap to have 59-yr-old eyes. I'll probably get in to visit her tomorrow morning, but might not be able to post anything until late tomorrow night.

Peace to all --Denny

Welcome to Vava's Village

This blog is dedicated to Vava: a smart, beautiful, strong-willed, sparky, hilarious, genuine, and loving girl who needs our care and support as she faces the challenge of a serious illness. Her parents, Marty and Ki, also need the support of their family and caring community of friends. The goal of this blog and the calendar at left is to keep people informed without the need to send out or track group e-mails, and to organize support for them using the shared calendar function. I'm Joanie, Marty's sister, Ki's sister-in-law, and Vava's aunt. I'm not an experienced blogger but this looks pretty straightforward. The responsibility will be on all of us to check the blog for updates on Vava's diagnosis, treatment progress, and family support needs, and to post our own support tasks on the calendar according to family requests

E.g., a family post might tell us they would like to have dinners brought to the hospital while Vava is in-patient. Ellen signs up to bring dinner for 3 Mondays in a row. Everyone can see this so Rose signs up for 3 Wednesdays during those same weeks. Also posted is a request to bring Vava's schoolwork (gosh, Vava would just love this). Ani signs up to do this every Thursday. Another friend signs up for Mondays.

If you want me to add something to the blog functionality (maybe you think there are other area merchants I should add to the "gift card ideas" list on the left), just send me an e-mail at jduffell@cfchildren.org

I am not going to explain the facts of Vava's illness in this post; I'll leave that to Marty and Ki who are in daily and direct contact with Vava's medical team.

Because this blog is semi-public, I'd like to keep last names off for the sake of privacy and security.

That's it for now. Let's see how this system works, and when all else fails, let's just hold hands and remember how much we love each other.