Monthly Archives: March 2011

patience

…Is a virtue I’m not sure I have in abundance these days. It’s been 3 weeks now since we got the unsettling news about the CT, a week since the surgery and still no definitive word on whether the masses are malignant or benign. The initial pathology looked encouraging, but until we get a final ruling our family will have this hanging over us. Last I heard they are getting a second opinion on the biopsy from Stanford, and Stanford may send it to Washington, DC if they need a third opinion. It’s hard to know whether the wait is a good or bad sign, but it is certainly not comfortable.

Diego went to school this afternoon, I’ll pick him up in half an hour or so. He is doing remarkably well for having surgery about a week ago, but is a bit cranky and moody. I never know whether it is physical or psychological or a bit of both. His appetite is not great, hoping it’s just very temporary. I wish we could get this little boy to EAT!

home

Diego was discharged from the hospital yesterday afternoon– hooray! We made it home at around 7pm for a tearful homecoming. Diego was exhausted and crying, Mateo doing a little happy dance that we were finally home. After the inital waterworks we all snuggled up on the couch. Super cozy~

Today we’re at home doing laundry and re-acclimating. Diego is cranky but otherwise doing okay. We’ll see how it goes with the pathology next week, but until I hear otherwise, Diego and Mateo will be back at preschool on Tuesday.

smiles & wagons

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One might think after 5 surgeries in under a year we would be old hands, that it might start getting easier. Or perhaps that was my wish- Recovery has been smooth enough so far, but I forgot how difficult it can be. This has been the first surgery that he has had where he was not actively ill before hand, so perhaps it has been harder to watch him in recovery.

In any case, sometime this afternoon around 4pm I got my first smile post surgery. What a relief to finally see that. Last night was a long night with pain control. One of the nurses said, “You know a 4 year old has had a hard life when he asks for morphine.” We laugh about this, but yes… This kid has been through far too much.

As in past hospital stays, he became depressed quickly, so I’ve had to keep his morale up. Family visitors perked him up a bit but otherwise he did not want to leave his room today. Late afternoon I finally managed to lure him out with wagon ride, made super soft with lots of pillows and blankets. The ride around the floor lifted his spirits and he was so comfy that he has been in there about 3 hours now.

club med

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The surgery was a success!!

The masses were removed in a three hour surgery this afternoon. Over the past week, we were becoming very discouraged about the possibility of a tumor relapse, but the surgeon actually said that the masses did not look like Wilms tumor in her experience(!) One mass, she said, looked like a bit like a mylar balloon filled with a fiberous substance(?) and the other more liquid filled. Both masses were neighboring his spleen, and while there was a risk it would have to be removed, it remains intact post op. Anyway, we will have to wait in suspense at least 3 days for the biopsy, possibly more.

Coming down yesterday was a big family adventure and the boys were excited about it. Even Diego’s grandmama and dinosaur came. It was a long drive down mostly in the driving rain, but Diego especially enjoyed the ride. It’s a big, new and sprawling hospital here, and Diego took off with his roller back pack as we tried to locate the Pediatric department. He was excited to explore this new place. He understood that we were here to get his tummy looked at a nd was okay with it. 

We checked in and settled in around 4pm, and after getting the admission filed away, we all explored the playroom. To our delight they have a great train table and lots of toys, and most exiciting of all, a large outdoor play area! My mom, Erich and Mateo drove back around 5pm and Diego and I had our dinner before returning to the playroom. Diego and I were there past 9pm, before we went back to our private room. From there, snacks and TV in bed until 11pm! Since he could not eat the next day I thought staying up late and sleeping in would lessen the discomfort. 

Of course, the next day he was still awake by eight an ready to go back to the playroom! He did fine all day, without food or drink, but I was STARVING! It’s super hard to try to sneak food in when your kid is NPO. Diego had so much energy he was strutting around the hospital floor like he was the mayor, IV pole in tow. He is very comfortable here. It was mostly raining today, but we did get out to the playground for about 15 minutes. Look at this kid, he is having a total blast!

Of course, post op it will be a different story, but I can only think that recovery will be much faster because his overall health is so much better. And, having great play spaces is a great way to motivate him to get up and go.

push up

Diego’s surgery has been pushed up to Monday. He is doing fine, but it’s been nearly two weeks since the CT reading, so stepping it up seems to be the best course. The Kaiser surgeon in Santa Clara will be performing the procedure. I spoke with the oncologist on call today to ask some questions and we feel comfortable with the decision to move forward with this plan. The UCSF surgeon was not going to be able to work with our timeline.

Diego is due to check in at about 2pm tomorrow, Sunday, so we can meet with the oncologist and surgeon beforehand. It will take us an hour or so to drive to the Peninsula from here. We’ve taking the whole family down and have spun it as a big adventure to Diego and Mateo. We’ve told him that he and I will stay there for a few days while the doctors figure out what is going on with his tummy. He was worried when I talked about it, saying, “But my tummy feels okay now, it is all better.” Then I changed the subject and talked up how the hospital is new and how I bet they have a great playroom. He hates hearing the medical talk. I know he will cry when he hears about the surgery, so we are just trying to break it to him slowly and not give him too much time to worry about it. We’re taking a cooler down with us too with his favorite non-dairy foods to keep his weight up. I’m expecting to be there about a week, but we won’t have the luxury of driving 10 minutes to go home so it’s a bit like packing for a big trip.

the plan

I’ve been emailing with Diego’s doctor, and told her this morning that we really needed a plan set today, that we could not go another weekend with things being up in the air. ( I just want to say again, that I know his doctor is working really hard for us but she has only so much power over the almighty foe of red tape.)

Et voila, le plan:

• Plan A is surgery at Kaiser San Francisco by the original surgeon (Dr. Shinjiro Hirose).

• Plan B is surgery at Kaiser Santa Clara on Tuesday March 22 by another surgeon, Dr. Kerry Sullivan. (Coincidentally she was highly recommended by another family I just met on the Wilms Tumor List Serv.)

At least we have a date set. I can work with this. I also have heard from a number of families that Kaiser Santa Clara is a newer, nicer facility than Oakland. Not the most important thing, but definitely a plus in my book 🙂

red tape

Diego’s surgery appears to be mired down in red tape. We would like the UCSF surgeon, but it seems to be rather complicated to get him, and it may take another week. Diego’s oncologist wants to get a less invasive biopsy in the meantime via interventional radiology. I am concerned about leakage from the mass if it is a tumor, and have asked her about risk. I’m not sure whether the UCSF surgeon is actually a better surgeon than the Children’s Hospital ones currently contracted by Kaiser Oakland, but that is my perception– That he is worth the wait.

This has been a hard, long week of waiting and worrying.

still waiting

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No word from the surgeons. I’ve made numerous calls, but nothing yet. Our surgeon was out of town last week so I was hoping that today we would finally hear something. I guess there is still an hour before end of business. I guess it’s not tomorrow so Diego will get at least one more day of his beloved preschool in.

We are busily occupying ourselves– a bit like preparing for a storm, a lot of rushing around. 

Erich had already planned on taking Thursday off to clean out our garage but instead we all went to Golden Gate Park to look at the model train exhibit at the conservatory of flowers. 

Friday I dropped the boys off at school, with the premise of working, but then decided we had to get a family portrait done on the weekend. I spent much of the day sending out feelers, making some calls and managed to find a really wonderful Berkeley photographer who could work with us on short notice on Sunday. We are so lucky to have so much talent around here!

Saturday we went back to the San Francisco Zoo (above) so the boys could ride the train there in the morning, while Erich went out for a bike ride. Morning at the zoo ended up being an all day affair, which is great except I didn’t have anything dressier than a t-shirt of Diego to wear for the portrait and had no time to shop. Then Erich and I had a date night planned, our first in over a year so we didn’t want to miss that. My mom came over to sit with the boys after they went to bed. Queue the last minute dressing change on Diego’s Broviac. Except we didn’t have tape: Store run, home, dressing change, hop in car, drive to Declan’s house to borrow sweater for shoot, then off for late night dinner  and drinks on Piedmont Ave. 

Sunday morning was the portrait session, only the photographer forgot about the time change. Lose another hour to our day. The session was great, the photographer lovely, but everyone except Diego was exhausted afterwards. I dropped him off at Declan’s house to play, and had planned on grocery shopping but collapsed on the couch. Nothing really has gotten done this week but I’ve been telling myself that nobody ever looks back on their life and thinks I wish I would have kept a cleaner house.