18 months OT

Photo

We passed DIego's 18 month off treatment without notice last week, and I think that' s a good thing.

Sometime next week, I'm expecting the calls from Radiology and Pedi Oncology to schedule his next scan and checkup, and I guess that's good too. (As much as I would love to be finished with this stuff.)

Often I stop and just savor how nice it is to be a normal family again. Sometimes, it's true, I even might forget (just momentarily) about what Diego went through.

And then something like this comes up: the Kindergarten registration form.

I had no idea they needed medical history, but there you go. I was planning on talking with the school, but it felt weird to just sum it up on a little form like that. I actually also expected they would have cancer in the serious disease area of the form, but they did not. Again, a reminder for me that outside of the pediatric cancer community, this is a freakishly weird thing. So I, like any social media addict, took a picture of it and put it on Instagram, sort of chuckling at how 'hardcore' my little boy is. I didn't get much of a reaction, and I sort of realized, okay this totally weirds people out. Freaks them the heck out-- makes their nerves get all bejangly and their palms sweaty. Maybe this is just too heavy.

So I took down the image.

I'm not sure if I expected people of find the humor in this or what but it was this weird little moment that I felt like sharing. So I guess I'll share it here. Kids cancer humor doesn't have an especially huge fan base, but you're laughing now--or at least have a smile on your face, don't you?

be here now

Photo

Sorry if that last post sounded like a downer, that wasn't my intent. Life is good, our focus has just shifted and that is probably for the better. It seems like so much of parenting in this culture is focusing on helping kids get ahead and preparing them for adulthood. At times I wonder if parents don't miss out on the here and now in this push for perfection.

two years

Two years ago today I found Diego's lump.

I've been thinking a lot the past few weeks about how our lives have changed. It's been a good year since Diego's last surgery, when they found additional differentiated tumors so we've had a year of normalcy. I still probably think still about the cancer every day, at the very least feel thankful for Diego's good health and our family. I worry, occasionally, a little. It's true, a tummy ache or a fever may never be the same for me.

We try to really live in the present, not think much farther ahead than a few months, which is a total 180 for me. I lost a large consulting contract last year so income has been a challenge, and between Diego's quarterly scans and the challenge of saving money, I feel we're really only able to see right in front of us. It was nice to have a week at Stinson Beach last year, but this year we will probably just stay at home. I remember it was so, so important last year to have that family vacation. There was so much uncertainty about Diego's future, whether or not he would need more chemo. As time passes, we feel a little more comfortable about his future, and Stinson is only an hour away.

I didn't mention the anniversary to Diego. Thankfully, it's a distant memory for him and one that he doesn't want to think about. Occasionally he will fixate on having "only having one kidney", but for the most part he's a very happy boy.

Diego's next scan is coming up in about 3 weeks. I've promised myself that I won't be a nervous wreck at his appointment...we'll see how that goes.

big kid school

Photo-1

I'm sure every parent has a certain amount of anxiety over sending their child to kindergarten. But, I suspect parents of cancer surviving five year olds have a bit more of it.

In any case, I feel like my neurosis on this matter has kicked into full gear this week, with the appeals deadline coming up for Oakland Unified. You see, we live in Oakland, which is known for many things, most of them bad, including the schools.

Now, I love Oakland and it really is a great place to live in so many ways, but the truth is living in a city like this shows the true face of public education. There are good elementary schools, but they are pretty much always in the priciest parts of town, and in the Bay Area we are talking about homes worth around $1,000,000. They are good schools primarily because the parents are affluent enough to donate enough to the school fund to pay for things that Oakland Unified does not. Like what you ask? Librarian, PE teachers, art and music teachers, and sometimes even extra custodians. And the schools in the affluent areas also tend to have more stay at home moms who can donate their time in the classroom.

Our neighborhood school is a "good" school in a really bad district. We applied to get into our top choice via lottery, but did not win. In playing this game, one generally take into consideration the chance one has at any given school and then ranks accordingly. It's rather complicated. I have written about it on one of my other blogs, if you're interested about the process.

Back when I started out touring the schools, I thought back to my happiest memories and felt all warm and fuzzy about Diego starting his formal education. But somewhere between then and now, my thoughts changed to worry. Worry that I would no longer be there to protect Diego. You see, he  still pees his pants several times a week. We have spoken to the doctors and they seem to feel that it is trauma and nerve damage related. They have not given us indication on when/if it will clear up. The "if" part is what scares me. I know I shouldn't think about the the "if", but it is there. Diego had 5 abdominal surgeries in one year, who knows what's going on down there. I'm encouraged to hear that it seems to be common among Wilms Tumor survivors, and parents tell me that it did clear up. So, I'm hoping.... but in the meantime what do we do?? Also, he still scares extremely easily (PTSD).

It seems our first choice in schools will probably not work out. This is the elementary next to the boy's preschool, where the principal is young and compassionate and they have children with disabilities (wheelchairs) in attendance. A number of Diego's friends will go there. But, spaces are scarce. When I called the school about the chance of appeal they told me that the school is over enrolled and it would not be likely, at least this year. I went to the school board office, and our second choice, also unlikely as that school would be absorbing a school closed for poor performance. For budgetary and performance reasons, the Oakland school district has closed a number of schools. this means more kids in each class, more competition and bigger schools. Also, its' a matter of fact that Diego's birth year (2007) was the biggest in American history. So all of these factors mean that should we choose to appeal we should do so strategically.

I decided to try to personally appeal to the principal of our first choice school. I felt perhaps with his story they could make room for him. But she said, it is really out of her hands and I would need to take it up with the student assignment office. So I drove down to speak with the Oakland school board to try to get more information about where the spaces might be, but I could not get much information out of them either, other than choice #2 probably wouldn't work out either.

At this point I decided to explore 2 more schools which I had not toured in the Fall. To meet with the principals, talk to them face to face and talk to them about my concerns for Diego so I could feel out if the school would be a nurturing and supportive environment.

"Big kid school" for Diego has become such a big concern for me because I had a very bad experience in third grade, right after my father died. I was placed in a class with a teacher with zero sympathy to my situation. On that first day of school, and a new school at that, I was introduced to the class as Maja, the girl who's father had just died. It was only about 2 weeks before that he lost his battle to cancer, and I burst into tears. And from that day forward, I was marked as an easy target. I endured so much teasing and bullying that year, and my teacher has no patience for me. I had a happy experience of school before that, but it was an incredibly hard year for me. And now, I'm sending off my little cancer survivor to a place where I feel I can't protect him any more. I don't want him to endure the teasing and the lack of compassion that I did, on his very first year of school.

I'm not sure if I'm overly worked up about this, but situations like this can bring things vividly back. The idea of Diego being teased or bullied breaks my heart. He endured so much, more than most adults in his short little life so far. I feel like he's like a war hero in some ways, deserving respect and honor. He is not weak, he is worn down and still recovering from what can only be called a nightmare experience at any age.

Honestly, I felt really uncomfortable talking to the principals, but I felt for my peace of mind, it had to be done. It's so hard to drop the C-bomb, and expose my child's weaknesses. I think in some ways it's counterintuitive to the way we've evolved from animals. Anyway, I felt if I spoke with them eye to eye, I could get an idea of how they would deal with the idea of a child with cancer, and how the school might support him.

I spoke with 2 principals at 2 different schools. The first, a woman, on Wednesday while the boys were at school. I led into the conversation by telling her that my son has a rather severe medical history and that he is a cancer survivor. She reacted about how I would expect. With shock but compassion. But the second principal, a man, reacted in an odd way. When I told him that Diego is a cancer survivor, he said "Congratulations!" And when I raised an eyebrow, he continued, "He survived!"

Ugh. Awkward. So awkward.

Now I know that the C-bomb takes people off guard, so I can be forgiving but it seemed pretty clear that the principal had a large amount of discomfort with the idea of children's cancer. The rest of our conversation went really well, but it's hard to really undo that first impression. I feel that Diego might have the best chance to get into that school, and it's one of the top schools in Oakland. But, do I forgive the principal for that flub? Or would it always be weird?

It's so strange. Having been through the experience of having a child with cancer and meeting other families, sometimes it feels like pediatric cancer isn't so rare. Now, I don't mean that in a scary way, more in a it's-not-taboo-to-talk-about sort of way. It seems weird to me that these veteran principals haven't had more experience with it.

I'm feeling guilt about not accepting his assignment of our neighborhood school, but I've been over it in my head many times and it just doesn't feel right to at least try for a better placement. Our local school has a librarian, and a number of amenities, but not the solid funding base of some of the neighboring schools. Who knows where Diego will end up...

Anyway, it's important to stand back and be incredibly thankful to be where we are right now: a family with a healthy 5 year old boy with his whole future ahead of him~

NED @ 15 months OT

Photo

So, hooray, Diego's last scan came out clear (No Evidence of Disease)! I should feel elated, and I am happy but I tend to feel really tired after the scans and checkups. We are happy, of course but it's such a roller coaster. I want nothing more than to put this whole cancer behind us, but every quarter we have that reminder that he's not quite like all the other kids. Generally, I'm able to shelve my worry and forget quite well, that is until we walk into the clinic. 

The scan was on Friday and I again requested that they wait to give us the results at the appointment. It gave me more peace of mind on Friday, but of course, in the waiting room I scanned every face for hints. It's pretty horrible, actually, and usually by the time I get the news I am too exhausted to feel much of anything. I guess my new strategy is to never feel 100% safe, always on alert that relapse could still happen. Because the last time I felt safe it didn't work out so well. I wish my superstition were less emotional, like wearing lucky socks- but this is what I've got. 

Anyway, I just want to put another word out that the Kaiser Pediatric Oncology staff is so wonderful. They are always so cheerful... really remarkable. I was feeling tired and stressed, but no matter what the team there seems to be giving 100%. They are really awesome, caring people. We've always felt fortunate with them.

After the appointment, we celebrated with vegan doughnuts at Whole Foods. They are actually are amazingly delicious, and don't put my kids into intestinal distress-- so that's a win-win as far as I'm concerned!

Scanning will continue every three months, until Diego hits two years off treatment, when it will be every four. At 3 years off treatment, it might go down to every 6 months. So, yeah- a lot more scans. He has developed a reaction to the contrast dye they use, and now vomits during the scans, so it's not exactly a party when we go any more. It takes a lot of bribing to get him to be brave for the IV, and I know now the vomiting is going to create more anxiety for him. Next time either he will get an MRI, or he will drink the gastrografin 5 hours ahead of time so he will have an empty stomach. Poor kid. I do know kids who are already down to 6 month scans, but they're not Diego so I guess it doesn't matter. I was hoping though...

And now we get to go back to being a normal family for the next 3 months. Really, we have so much to be thankful for. Despite the obstacles, Diego continues to be very healthy, and we are so lucky. While some days I lament we can't just put it all behind us, I know it's so important to never lose sight of what we have here and now.

new year

Classicplay_2012

This rainbow image has been getting a lot of mileage with me. A friend took the image over Fells Point in Baltimore on New Year's day and it fills me with hope, particularly with Diego's own symbolism of storms and rainbows during his treatment.

I try not to think about things, and by things I mean Diego's disease. I don't feel that I can pretend it never happened, or act that it can never happen again, honestly I really don't know. When we had the scare with the relapse in March/April of last year, I realized that my confidence that he was "done" was wishful thinking. Statistics made me believe that everything would be okay. Then the new masses were discovered, and I discovered that statistically it looked like a Wilms tumor relapse. Then when the new tumors were found "dead" or "differentiated", I found out that that was statistically very rare. At the end of it all, it's a statistical dead-heat. Time will give us some comfort, as relapse is most likely to happen in the first 2 years after treatment.

Anyway, it's hard not to start a new year and look ahead. I remember at then end of 2011, after Diego spent 3 weeks in the hospital for another bowel obstruction and 4th surgery he had only just finished his final chemotherapy. We hardly felt off the hook at that point. We were exhausted, and while those around us told us to expect a great 2011 because things have a way of evening out, I think I knew better.

Still, at Diego's first off treatment scan in March I brought the camera with us and he posed smiling and goofing off in front of the machine. We had no idea that our worlds were going to be turned around yet again. Since then, no more cameras at the scans, and no more illusions of being in control. It's a crazy balance that one gets used to, I think. One has to sort of co-exist with the disease post treatment. The war is over, but it's a matter of keeping the peace day-by-day.

Erich and I watched a travel show on Beirut a while ago, and I think we both had an odd understanding of their culture. The film crew got there to film a typical show in 2006 only a day before the bombing of the airport and subsequent war. They ended up filming a documentary of their experience, right up until they were rescued by the US Navy. On the first day of filming in the streets, the film happened upon rebels celebrating the death of three Israeli soldiers, and it was clear the Beiruti host knew what was going down. That night, the film crew went out on the town, as planned, with Israeli jets whirring threateningly above the rooftop cafes. But the Beirutis weren't ready to let the party stop. Under a constant threat of attacks over decades, the Beiruiti culture decided, has always decided, to keep the party going, because, as it was either implied or said, "It could end tomorrow." I turned to Erich and I said, "This is how we live our lives."

And really, with cancer or without, we really never know what's going to happen. It's hard to know when I will feel "safe" about the cancer. I'm not sure if I will ever let myself feel safe about it again. The last time I did they found more tumors. So, I try to just not think about it, and say my little prayers and send out my little positive vibes.

Sadly, Diego's friend we met in the hospital last year was diagnosed with a cancer relapse last month, only a few months off extremely aggressive treatment. (Diego's was a cakewalk, by comparison.)

Shit happens. Unfair shit. Every. Single. Day. It will never stop happening, so this is exactly why we need to celebrate the every day. People make it through cancer, kids make it through relapses. Sometimes they don't. We really don't know what is going to happen. The only control we have is our outlook. We can choose to find the joy, to celebrate, to fight back the fear and worry. This is the way we take control of our lives and make it our own.

People often ask me how I don't worry, or ask me to 'teach' them. Which is funny because I used to be a total worrier, and spent way too much of my time living in fear and concern. And I'm not saying I never worry, but when I feel it's taking over, my fix is one part control and one part bravery. Putting one foot firmly in front of the other and not letting the fear take over. So here's what I recommend:

Breathe deep.
Hold it.
Release.
Repeat.
Repeat again.

There, do you smell that? It's the roses. And don't they smell sweet?

NED

Photo

NED: No Evidence of Disease

Hooray for great news- Diego has hit the 1 year milestone!

We had to wait half an hour in the lobby for the scan results/checkup, and I was getting very nervous. Then Mateo started having a full on 2-year-old tantrum, so I was feeling quite taxed by the time Diego was seen. But in the end- hooray the news was great! The iffy 'post operative change' area was not even noted in the report, so I guess this was an awesome day!

The next scan will be in 3 months. I guess they still feel they need to keep a closer eye on him with his odd case history. Eventually it will go down to 6 months, and then to every year. I had thought to ask if his odds were better after reaching this milestone, but I realized with his less-than-casebook history it wouldn't really mean anything anyway. He's doing great and that's all I need to focus on for now.

Isn't this picture great? It's a sibling portrait they did at the preschool. I've never been crazy about traditional school portraits but, well, just look at those little boys~