When they're too quiet, you know something is up

Frédéric was watching Lenaïc the other day and was wondering why he was so quiet. He came out to this....


Who me? Who could resist such a look?


And a playdate with our old friend Ann, now with a little one of her own!

An Outing with Papa

Feeling a bit overwhelmed lately, rushing from one thing to another, I decided I just wasn't up for a hike this weekend and really wanted to stay home and clean our house after last week's party. I know, lame, but I needed some "me" time. Frédéric has been feeling better, so said he'd take the kids on a secret outing in lieu of our planned Enchanted Rock hike.

He wouldn't tell me where they went, it was a secret. But I found these pictures on the camera! Looks like it was fun. For all the pics, Click HERE

To Chemo or Not to Chemo?

That is the question.

I think we know the answer.

So far, Frédéric's surgery recovery has gone very well. He looks good despite losing some weight (which he could not afford to lose), and is getting around. Still getting worn out and his body's not back to full speed, but he's progressing nicely.

The scary thing about cancer is it's like a weed. You see a small weed in your lawn and you pull it. You think you got the roots, you hope it didn't seed before. And you wait. Or you bash the lawn with chemicals to kill all potential weeds, killing a lot of good stuff in the process. Sometimes you know it's already full of weeds and you have to go at it. Other times, you wait and see. The trick is to catch it again before it gets out of control.

Did the surgery get it all? Probably. Is probably good enough?

Today we saw his local oncologist. Let me backtrack. I'd said before we'd be consulting with the expert team at Indiana University. These folks are the world reknown experts in testicular cancer. They're pretty incredible - send them a bullet report of all labs/scans/reports, the head guru sends back, within 24 hours, his comments and/or recommendations. (Amazingly fast, though knowing how fast my own inbox used to fill up and emails got buried, I see why he responds immediately). In any case, his recommendation came back : Surveillance instead of chemo.

What is Surveillance?
For 1-2 years:
*Blood tests monthly at first then every two months to look for 3 key markers: AFP, LDH, HCG.
*CT scans every 3 months
After 2 yrs: check ups every 6 months

The type of tumor Frédéric had is generally detectable with these markers. That he had an elevated AFP suggests if the cancer has indeed metastasized, it'll become elevated again (so far it's come down to normal range). CT scan will show any tumors, and will be needed for the kidney cancer follow-up anyway.

There are indeed some risks to relying on surveillance:
1. Non-compliance. Patient feels better after awhile, stops going in for checks...we know that is not going to happen (esp as my former job involved assuring patients complied with treatment for TB, I am no stranger to getting patients to comply ;-))

2. Not catching the metastasis, if there is any, soon enough. However this surveillance schedule should be more than adequate to do so. And if it has metastasized, chemo will then become necessary.


So back to our local oncologist. I had forwarded him the information from the Indiana University team so he could review it. He said his initial suggestion was to be chemo (2x BEP or 6 weeks). He said given the metastasis to the perinodal space, he's at Stage II and this would be the standard recommendation. However, he didn't disagree with the IU team. Also, what the pathologist found was all of 2mm, VERY small, so it's entirely possible the RPLND surgery removed it all. In short, he said though this wasn't necessarily his recommendation, he'd feel comfortable with a decision to rely on surveillance, if that's what Frédéric chose. Now we could get a few more opinions, but it won't matter much. It's not like we'll take the majority rules route.

So together with this oncologist, we worked out the above schedule for surveillance. For now. He has a few weeks to make a final decision, but choosing not to have chemo, at this point, is no greater risk than actually having the chemo. And in fact is less, given the risks of chemo.

If he chooses not to, we recognize that they may find cancer later, he may need 3-4 rounds instead of two. But maybe not.

As for the kidney cancer, he needs surveillance for that, but the CT scans will address that. One note is that he'll be evaluated for Van Hippel-Lindau disorder, which is a very rare hereditary disease which basically shows up as two or more tumors in locations which would be very unusual otherwise - like a kidney tumor in a 39 yr old (the testicular cancer is not unusual in his age group, but having that + kidney cancer is). This won't make any real difference in treatment, but will indicate if he has a genetic predisposition to it, and give us some guidance for our kids' need for future testing.

I wish I could say this was a relief. However, in some ways it prolongs the worry. But even if he did have chemo, he'd still have to do 5 years of surveillance anyway. And I at least would still worry, because that's what I do.

So.

We can't yet say he's cancer free. We don't know for sure that chemo will never be necessary. For now, it looks like we'll rely on prevention and surveillance, unless things change.

And again, how grateful I am to this incredible support group we have - here in SA as well as around the world. These last 2 months have not been easy, but you all have made it so much more bearable, and have made our kids very happy.

And after all that today, we treated ourselves to lunch at Il Sogno :)

How does one resist such a face?

The plus side of Frédéric's cancer is that while recovering from surgery, he's been home for a few weeks. While he can't do a lot with the kids, during the day while Angelina is at school, he has a lot of one-on-one time with Lenaïc.

And what a great party it was!

Despite there being about a million events happening May 7, a wonderful group of friends (and their kids) turned out for Frédéric's birthday celebration Saturday.

Happy 40th Birthday Frédéric!

That fabulous husband of mine turns 40 today. And what a way to celebrate: recovering from cancer surgery. But celebrate he will. He says he's up for a party so that's what we're doing - a big party!

Overall, he's recovering well. Sore, worn out after a couple of hours of being out and about, but generally improving. We're not sure yet about the next steps regarding chemo. There's a good possibility he won't have it, but we won't know for sure til next week. For now, he's trying to get his body back and all his insides back into place.


Happy Birthday My Love! May we celebrate 40 more!

Mini-Me

He has Frédéric's upper lip, but otherwise, Lenaïc is my own Mini-Me.

Unfortunately (or fortunately), he also acts just like me....
The kid NEVER stops. Like ever. Even when sleeping he moves constantly. And tho his vocalizations aren't exactly understandable yet, he talks CONSTANTLY. Even more than Angelina, if you can believe it.

He runs around the house with his hands behind his back so I won't try to hold it. He wants to run free (preferably naked), unhindered by Mommy. but man can he laugh! Angelina will get him started and the two of them just crack up laughing. We still can't figure out what they are laughing about, but it doesn't end.

If only I still had such energy...

Leave it to the chickens

Dog Days of Summer....April in Texas

There's nothing like sharing a paleta with a friend.



A paleta is a "Latin American ice pop, usually made from fresh fruit." Angelina, of course, chooses chocolate. My favourites are mango and papaya but they have cream, so Lenaïc and I now settle for watermelon, or sandia.

One of the true joys of a San Antonio Summer is the Paleta man cycling by, tinkling his little bell. We have a favourite guy - he used to be here all the time, then disappeared for a few years. Now he's back, remembers us, stopped by to say hi. I guess we were good customers. He speaks no English and my Spanish leaves a lot to be desired, be we managed to communicate. He knew us well when I was still pregnant with Angelina, so it was fun to see his face when he saw the almost 5 yr old running about.

Lenaïc got his first taste, and liked it.

A Day at the Zoo

Frédéric Update: his recovery is progressing ok. He was feeling awful early in the week, then hit a turning point. Finally improving, but taking it slow.

Fridays are when I pick up Angelina before lunch, and ideally go out and do something fun. Weather was pretty nice today, so decided to go to the zoo. But really, we didn't go for animals. The zoo has a Tiny Tots area with a "riverbank." It's a great area - sand, little "river", fun stuff to play in. Loads easier than going to the real river with 2 kids, and we see a few monkeys and birds on the way. Since we weren't planning to really walk around the zoo, Frederic decided to join us. All he had to do was walk to the area, sit. It wore him out, but we were really glad he was there. One bonus to all this, he's been spending more time with the kids, seeing all their antics.

In the end his incision started leaking and he was pretty worn out, but the kids had fun in the "river." For more pics, go HERE

My Husband the Medical Oddity

First News – Frédéric is home. He was discharged from the hospital on Sunday. They told him his initial recovery was faster than expected. Alas, further recovery will take some time. When they take all your insides out, put them on your chest, cut more, put them all back, it takes awhile for everything to get back into place. He’s doing alright, just in pain and nauseated and losing weight. Hopefully that will improve with time. He's taking walks around the house to try to jingle everything back into place. The doctor said to plan for 3-4 weeks recovery time.

Second News – Good News and Not So Good News
As expected, the kidney tumor really was from the kidney – not metastasis from the testicular cancer. This is good. They removed a wide margin around the tumor, leaving half the kidney. The pathology report indicated this was sufficient to consider the cancer completely removed. And though he’s now at a slightly (5%) increased risk for kidney cancer in that same kidney, they’ll consider the kidney cancer cured.

The other part of the surgery was the lymph node dissection (RPLND) related to the testicular cancer. TC usually goes into the nodes first, so removing them and evaluating them helps both to potentially remove the cancer and determine if it’s spread. Ideally, if it’s in 2 or less nodes, surgery should be sufficient along with surveillance, so no chemo. Initially 2 nodes had been enlarged, which was the cause for concern. They removed 29 nodes overall. All negative for cancer! Hooray! That’s the good news.

The not so good news – they found cancerous cells in the tissue between the nodes and in the vein. So the nodes are clear of cancer, but the tissue is not. This is strange. Apparently, having only the lymph nodes affected or the lymph nodes + tissue affected is typical. Having only the space in between the nodes affected is not. You oncologists and pathologists may have more info, but in a quick review of the literature I couldn’t find any info on this type of situation and the urologist found it very odd.

What does that mean now? We don’t know yet, but probably chemo. Possibly two rounds instead of the more usual 3-4, and maybe 2 drugs instead of 3. However the standard drug for testicular cancer is Cisplatin, which is toxic to the kidney. Though they managed to save half the kidney, his kidneys are weakened and they are at increased risk for kidney problems. So over the next couple of weeks we’ll be making the round of oncologists locally, and his info has been sent to the testicular cancer experts at Indiana University (incidentally where my sister happens to be on faculty, in a different department). Fortunately his case isn’t severe, just unusual, requiring some thinking outside the box in terms of next steps. They don’t want chemo starting until he’s completely recovered from the surgery and his kidney function is as close to normal as possible. Oh, and it’d help if he could hold down some food so he can put some weight back on…

Thank you all again for your wonderful support, help, thoughts, meditations, and prayers. All are very welcome and appreciated. You’ve all made this experience go much more smoothly.


For you medical types, the exact wording on the final path report is:
"the lymph nodes are negative for tumor, however, in the perinodal lymph-vascular spaces metastatic embryonal carcinoma is identified, 2mm at greatest dimension."

A visit with Papa

Progress

Frederic is up and walking around. It wasn't easy, but he pushed himself to move.


The doctors described his surgery as "We had to take all your organs out, put them on your chest, then move them back in again. So they're all jumbled around." Walking helps get everything back in place, so he needs to move. Angelina helped :)

Surgeons and Smiles

(Forgive the repost from Facebook and email...it's been a long day!)

Happiness is....seeing your husband's surgeons walk out of the operating room with big smiles on their faces. And they hugged me. I love these guys!



All in all, Frederic's surgery today went very well. A little more than
5 hours, they managed to save the better part of the kidney, removing
the tumor completely. Though we won't have final word until the
pathology report comes in, the pathologist who was in the surgery said
he was pretty convinced it was a kidney-specific tumor. That's a good
thing, as it means it's not metastasis from the testicular cancer and
treatable completely by removing it.


Next they went on to the lymph node dissection, which also went very
well. They were very grateful he's so thin, making it much easier for
them to see everything clearly and work quickly. Again we'll have to
wait for the final pathology report (7 days), but from their
observations, they think at most one node may have testicular cancer
(this is good).

The nurse kindly reported to me every hour during surgery how it was
going. Frederic handled it all very well. He's worn out and feeling a
little cruddy tonight, but a visit from the two munchkins cheered him up
(and if you can believe it, Angelina *sat still* in a chair in the
hospital room while visiting). Recovery will take awhile and he has
multiple tubes sticking out of him, but the first (or I guess the
second) hurdle has been overcome.

Thanks again to all for your prayers and thoughts, and help. Two
families took our kids for the day, and meals have been arriving for
which we're all very grateful!

A Big Day Ahead

Tomorrow, April 20, is a big day for all of us. See, last month Frédéric was diagnosed with cancer. The Big C. Not just one, but two. He found a growth in his testicle, and after a few doctors visits, a cancerous growth was confirmed. Within days he was whisked in to surgery to have it removed.

When Angelina was born, and in NICU, we often said "We're lucky in our bad luck." Well, We're still lucky in our bad luck. Cancer is never good, but if you're going to have it, might as well have one that has a 90-95% cure rate. The pathology on the tumor eventually came back as stage IB cancer. Not as good as IA, but way better than II or III.

Alas, it was not as simple as that. In a CT scan following surgery to see if the testicular cancer (TC) had metastasized, a second tumor was found. On the kidney. TC goes like this: testicle -->lymph nodes ---> abdomen/lungs ---> brain and then maybe, just maybe, kidney. Basically TC never goes to the kidney unless the whole body is affected. Which, in Frederic's case, it's not. That is clear from all the exams. So, this looks like a totally independent, second primary tumor on his kidney. What are the chances of that? Almost none. None of the 20 or so doctors who've reviewed his case locally had ever seen this, and they were all so amazed that they were all calling their med school buddies to see if any of them had seen it. All no. I did eventually find one person in NY who'd had a similar situation. So he's not the ONLY one, but he's still a medical oddity. I'm waiting to see it written up as a case review in the Journal of Urology sometime in the near future.


Anyway, so We're Lucky in Our Bad Luck Part II. Here's the deal. Kidney tumors are very slow growing. Often they're not found until they're in stage II and showing symptoms. Cure rate is still good at 80%, but they're not susceptible to chemotherapy or radiation, only surgical removal. So finding it early is key. And this was found early. Thanks to the testicular cancer. They never would have looked for a kidney tumor without the TC. So, in a way, testicular cancer saved him. At this point, the kidney tumor looks to be in Stage I as well, with an excellent prognosis.

Wed, April 20, Frédéric will go back into surgery for 6+ hours for two things: partial (hopefully) nephrectomy where they'll remove the tumor and try to save at least part of the kidney. They will also do an RPLND - retroperitoneal lymph node dissection, which will remove the lymph nodes nearest the testicle, most likely affected by the testicular tumor. While two kidneys aren't absolutely necessary, if he does end up needing chemo for the TC (hopefully not), the drugs are toxic to the kidney, so he needs as much kidney function as possible. The surgeons are the best, and we all feel positive he'll have a very positive outcome.

As for Angelina, she's aware Papa has to have an operation, and she's ready to "help" him get better. She doesn't seem too scared, but after the last surgery she didn't want to leave his side. This is a bigger one, and he'll be in hospital recovering for awhile. She's already prepared to "scrub up" when she goes into visit him (like we told her we had to do when she was a baby in NICU).

And on the "Why I love Lavaca" front, well, it's not just Lavaca, but our whole extended community here, the outpouring of love, concern, HELP, is just beyond belief. So many friends have stepped forward to help with the kids,prepare meals, go grocery shopping for us, even come over at 5am to stay with the kids so I can take Frederic to the hospital. We are so blessed to have such incredible support locally. We are also so blessed to have such worldwide support: friends and family across the globe have been amazing. I love that masses are being said for Frederic in a little village church in Ireland as well as in Oxnard, CA. That prayers and good thoughts are being sent to us from every continent.

While Cancer is scary, Frédéric is stronger and will kick cancer's butt! With a little help from our friends.

Swimming

One thing is for certain, our children are part fish. They LOVE the water. So it was high time we had swimming lessons. Angelina started last summer in CA, then continued on here with San Antonio Swim Academy. She has her moments of not wanting to go (really, she just doesn't like being *taught*), but her current teacher, Mr. Ryan, is excellent. This past year she's learned to do a lot in the water and is really confident now. I still don't trust her to swim alone without a life jacket in the river or a lake, but she can swim in a pool pretty well!


Lenaïc also started lessons in January. He loves it, except when he has to go on his back. Months later he still hates that. His favourite game is throwing the toy and swimming towards it (with Mommy's help). he loves this so much he tries to do it whenever he sees water, even if he's not swimming. We've had to miss a few classes lately due to illnesses (mine and his), but hopefully next week we'll be back on track.

Today, Frédéric was home early so he decided to join us. Angelina loved showing off her technique and we finally have some PICTURES.

Viva Fiesta!

For 10 days every April, San Antonio is transformed. Ok, not really transformed, since San Antonio is pretty much Fiesta City all year long. But in April it's different (FIESTA), and it's too hard to explain. You just have to come here to experience it.
.


This year, we have a lot going on so we skipped most Fiesta events. However, we took advantage of our friends' downtown apartment to watch two parades we'd never seen: Battle of Flowers, which is the event that started it all, and the Flambeau Night parade. We also participated in the one event we always hit (partly because it's basically in our neighborhood): the King William Parade and Fair.


The King William Parade is a funky, mismatched, anything goes parade reflective of the neighborhood. For the past few years the King William Area Kids (KWAKs) have had a neighborhood float the kids help decorate and ride, while the Southtown Area Parents (SAPs) walk behind. As we waited to start, the parade was delayed. Finally learned there was a house fire along the parade route. Organizers quickly re-routed the parade, got spectators moving, and off we went. For pictures of the pre-parade float decorating, set up, parade, and post parties, click HERE.

Spring in Texas

As Frédéric's 40th birthday is approaching, he decided he wanted a new camera. I didn't even bother to try getting it myself. I told him to find one he liked and that was his present.

The pictures are incredible, however because the files were so big, I haven't been able to load any for awhile. I finally learned how to make them smaller, so here they are!

click here.

Camping!

Our kids LOVE camping. Nothing can be more fun than setting up the tent and hiking with Papa (and Mommy too, but Papa is key here...).

Now Angelina is convinced camping = S'nores (aka S'mores - those marshmallow/chocolate/graham cracker things). I hate marshmallows (or as Angelina says "Shmarshmallows"), but she begged and begged and begged....it wasn't camping if there were no "S'nores." So I relented and brought stuff along. Turns out she didn't actually want the s'mores, just the marshmallow.

And camping isn't camping without a sleeping bag, even if it's 80F (27C) at night. She insisted on zipping her sleeping bag up all the way. I had to wait til she slept then unzip it, as she was already soaking from sweat. Fortunately, it cooled off after midnight.


So this past weekend we decided to skip Fiesta and head out to Garner State Park.




The Frio River runs through the park, and as the name suggests, it's usually cold. But as it was in the 90sF in the afternoons, the water felt perfect.




After a long hike...

For more pictures, click HERE

Apparently, I'm second rate

While putting Angelina to bed (normally Papa does this), she asks me "Mommy, do you want to stay 2 minutes, or 5 minutes?"

I say "5 minutes."

She responds, ever so sweetly "Mommy, I like you, but I like Papa best, so how about you stay 2 minutes?"