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
4 comments:
It's great to get such detailed updates.Rose has been wonderful filling us in,but this has pictures!Tink has been a very good young lady,but I know she misses you all like crazy-especially you Va!
You all look beautiful and strong,as always.keep up the good work!
oxoxoxoxooox peg, brian,sammy and tink
Comment from Nick!
>Dear Vava,
>
>
>Hello from Down Under! I am writing to you at this moment from the
>wonderful, exciting and sometimes strange country of Australia. I am on
>vacation here with for three weeks and I am spending my time exploring,
>surfing, fishing and sitting in the sun getting a sunburn.
>I have also just heard from Elizabeth that you are going through a
>difficult and scary time right now and wanted to write to you and let
>you know that even though I am thousand of miles away in a foreign
>country I am thinking about you and sending my prayers and my good
>thoughts up through the clouds and stars to you. I have never been
>through anything like you are going through and I cannot imagine how
>overwhelming, frightening, and painful it must be. But I also remember
>and know that you are very brave, courageous and you have the kind of
>spirit it takes to face this kind of challenge and overcome it. I can
>remember the times we were all at Priest Lake in Idaho and playing
>around the campground, you were always so excited for new adventure,
>trying new things and taking new risks and always laughing through it
>all. Be strong Vava, I know you will make it through this.
>
>I don't want my entire email to you to be all serious and heavy, so
>I'll tell you about some of my adventures in Australia and maybe it
>will help take your mind away from all the doctors wanting to poke and
>prod at you. Yesterday, I went surfing in at a place called Grunters
>near a town called Margaret River which is on the west coast of
>Australia. Surfing is very fun but super difficult especially when you
>are just learning like I am. I have a friend here named Simon that is a
>really good surfer and he was teaching me how to do it and be careful.
>But I still got smashed by the waves and tossed around like a stuffed
>animal, if you saw me you would have laughed really hard because when I
>got finished I was so tired that I looked like I was a cat that someone
>threw into a bathtub. A very wet, sad cat covered in sand and salt
>water. Afterwards we decided to go fishing to try and catch some dinner
>to eat later. The Australians we know call barbecues "barbies" and
>whenever they talk about fixing dinner they say things like "Oy, mate,
>we're gonna throw a fish on the barbie!" Which always makes me laugh
>because I just picture them throwing a fish at a Barbie doll and think,
>wow, that's going to taste weird.
> I fished and fished but no fish were biting. Most of fishing is
>standing around and waiting for a fish to get hungry enough to decide
>to eat your bait. I was getting kind of bored when suddenly I had huge
>strike on my line. BANG! Whatever had just grabbed my lure pulled so
>hard and fast that I almost had my pole pulled from my hands. I fought
>and fought and hung on for dear life, as much because I didn't want to
>lose the pole or get pulled into the water and after about ten minutes
>I reeled in a small shark! It was a baby shark but still about a foot
>and half long. I instantly felt really guilty because you can't really
>eat sharks and I just caused this poor animal a bunch of stress and
>panic, plus, I am so scared of sharks I didn't know how to touch it and
>get the hook out. Thankfully, the hook only went in near the shark's
>lower lip and my friend Mark helped me hold the shark down so I could
>pull the hook free without getting bitten. Then I told the shark I was
>really sorry for disturbing it and hurting it and to tell the other
>sharks that I am really a nice guy and please don't bite me if I am
>ever swimming in the ocean and then I released it back into the sea. I
>fished awhile longer but I didn't catch anything else at all. The shark
>must have told everyone down there that I was fishing and to leave my
>squid bait alone. I hope it told the other sharks about my nice deed
>because I am still planning on swimming some more down here and it
>would be horrible if the baby shark's mom or dad came to find to me.
>
>This morning, I woke up and we went spelunking in some caves just south
>of Margaret River. These caves we went inside were HUGE. I have never
>seen anything like them in my life. There were so many stalactites and
>stalagmites and very odd cave formations and growths it was hard to
>believe they were actually real. In this one cave called, Jewel Cave,
>there were these calcium growths from the ceilings called "straws."
>Straws are basically like a straw you use to drink milkshakes but they
>are made from hard calcium so they are hard like a rock, but still very
>fragile. Straws grow down from the ceilings of caves at a rate of about
>two inches every fifty years and the longest one we saw was about ten
>feet long! If you do the math you can figure out how old that straw is
>and how long it has been growing. Actually, I am really bad at math, so
>if you do figure out how old that straw is please tell me. Another cave
>we visited called Lake Cave actually had a lake inside in it! Instead
>of fish, it was full of blind albino shrimp. They are blind because
>they live in total darkness so they don't need eyes, and they are
>albino because there is no light to give them color. They look kind of
>scary and we nicknamed them "Ghost Shrimp" because they looked like the
>ghosts of all the shrimp I have ate over the years coming back to haunt
>me.
>Mmmmm, shrimp, so delicious, maybe I'll have some for dinner. Maybe
>I'll throw a shrimp on the barbie!
>
>Well, those are just a few of my adventures down here in Australia and
>I have attached some photos for you to look at so you can get a better
>idea of what I am talking about. I will continue to pray for you Vava
>and wish that everything turns out for the best during your coming
>adventure. It might not be a fun, exciting adventure, but it is
>different kind of adventure that sometimes life throws our way. I know
>you will be brave and move through this dark patch with a strength like
>no one else. And remember you have people all around you who love you
>very much and will help you in any way they can.
>
>All my best,
>Nick
>
>PS: When I was in the hospital one of my favorite things to eat in the
>whole world was a little cup of crushed ice flavored with just a touch
>of orange soda. It was like a little snowcone and tasted so delicious.
>See if a nurse will make you one. Trust me, they are awesome.
>PPS: I can't wait to hear about your adventures too, I bet already you
>have some good stories to share.
>
>
Hello y'all...I am very anxious for a visit but am waiting to see when a good time is for you. Thinking of Vava lots and please let me know if there is anything at all I can do to help you out (errands or whateva)--I live just blocks from the hospital!
xo, Beth
i do not like this food vey much...it tastes like well ur tipical hospital food!!!!! theres other ways to describe it but i'd rather not go down that road. lol. well first of all i have had about a million pokes, and not to mention prodes, and procedures and scans and xrays. :( lol. omg. :*) bye bye!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! ps, this is vava talking!!!!!!!
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