Monthly Archives: April 2011

checkup

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Diego had a check up today at the clinic, and an infusion of IV antibiotics as well. The tumor board discussed Diego’s last week and Dr. Sharma was going to brief me on their conclusions. She asked if I wanted to have the child life specialist play with the boys while we talked. Dr. Sharma assured me that there was nothing new or scary, but thought it would be easier. Still, I felt my stomach sink. Ugh, more chemo I thought…

Anyway, there weren’t any new developments but she took the time to go over everything with me to help me understand their decision. The board unanimously agreed not to treat Diego at this time- based on the biopsy results, clear CT scan and risk of additional chemo on a little boy who had so many complications. Chemo for relapse is much more intense and prolonged than what Diego received initially, so it’s not something to be entered into lightly.

The third pathologist from UCSF reviewed the tissue and agreed with the other two- “dead” Wilms tumor. No malignant features were seen. Dr. Perlman, the national Wilms tumor expert was consulted but did not review the tissue. As I understand it, the hypothesis is that the tumors were fragments of the original tumor. Dr. Perlman said that sometimes treatment causes Wilms tumors to differentiate, meaning cells grow new muscle tissue that isn’t necessarily malignant.* Why weren’t they seen on the scan in December? Apparently they think it is because at that time Diego’s abdomen contained a lot of fluid in that area due to the bowel obstruction, and that fluid masked the growths (which would have presumably been much smaller). So they are, at this time, not classifying this as a relapse. It is not a clear cut case, and there is virtually no data on what could happen from here. Dr. Sharma offered that one of the pediatric oncology veterans had mentioned that he had seen something like this before, where the tumor resolved on its own. At least, I think that’s what she said. There was some vague encouragement there somewhere, I think.

From here, Diego will get another CT in early July, and then every 3 months for an indeterminate amount of time. His doctor was going to leave the Broviac in until after another CT comes back clear, but I asked if we couldn’t just remove it and why it was such a big deal to take out. It is minor surgery under general anesthetic, but apparently if he needs it again it wouldn’t slow down treatment to get it put back in. It is a source of infection and as long as he has it in, anytime he gets a fever over 102.5 we have to bring him immediately to the ER for IV antibiotics. We did that once on a weekend in Tahoe. Not too fun. Besides that the Broviac is a bitch clean, requiring masks, gloves, a sterile field for Diego and I. That’s been twice a week lately, and sometimes daily in the hot weather. Also, he can’t really swim with it on, certainly not in the ocean, and I worry about it getting pulled out by Mateo or some other kid at preschool. I’m also tired of the Broviac “accessories” taking up all the space in the toy closet. So, yes, please take it out– I’m over the superstitiousness of it at this point. In fact, another thing this experience has taught me is that stuff doesn’t work. Thinking positive, thinking negative, none of it seems to have an effect on things in my experience.

The IV antibiotics, in case you were wondering, are because Diego developed an allergy to Septra/Bactrim, which is an antibiotic they put chemo patients on because they are at risk for a certain rare infection. Today’s antibiotics were a replacement. The antibiotic regimen needs to be kept up while on chemo and for 6 months afterwards. But hooray- Diego will hit that mark in exactly one week- so hopefully that will be off our plate.

I’ll say that perhaps prayer and good thoughts have made a difference, I can’t help wonder if this dead tumor is our little miracle. So thank you friends and family, keep the prayers and good vibes coming for our little boy. As I’ve said before- all denominations accepted. We have another 4 and half years to go before he is considered “cured” or in remission, so please continue to hold Diego close to your hearts.

* Addtional note added on 4/26.

NED

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Diego’s CT scan was this morning at Kaiser. Not wanting bad news to spoil Easter festivities, I had decided that I did not want the results back until his appointment on Monday, after tumor board has met. Not five minutes after I emailed Diego’s doctor to tell her as much, I got a call from the oncology office– apparently they hadn’t gotten the message. But, from their end the message was, actually, great– No Evidence of Disease (NED)!

We certainly feel a lot of relief, and perhaps some disbelief. But, we’ll take the encouragement where we can get it. I think that one of the many lessons I’ve learned this past year is sometimes, the best thing to do is just be thankful for what you have.

Next up: Diego’s oncologist will present his case to tumor board, and he will have a checkup on Monday 4/25. I expect the board will agree with Diego’s doctor to not restart chemo at this time. I also expect that there will be continued monitoring.

There have been a lot of ups and downs since Diego’s last scan and I’ve gone over a million scenarios of what might and could happen. In the end, instead of worrying I’ve decided to just live in the present and take things at face value. Simply put, worrying is not productive. Diego has been feeling and doing great, times are good so why not really relish these moments? There is a time and place for worry. I’ll deal with it when/if I get there.

bland is good

Stanford’s pathology report finally came back. The verdict, according to Diego’s oncologist is “Dead Tumor”.

Now, that’s better than a live tumor, but it’s cetainly unsettling. Perhaps a bit like finding out a serial killer came into your house, sat down on your couch and had some cookies and milk while you were away. But he had the courtesy to leave a thank you note, since you weren’t there. So, are you coming back later Mr. Wilms? Can you, like, text me next time to let me know if you’re coming by again so I know to make sure we are the hell out of the house? Or maybe we just need a much, much better security system.

Anyway, I did get a copy of the pathology report. It seems that the Kaiser pathologist had thought it could be some sort of cyst, but the Stanford pathologists felt the masses were consistent Wilms tumor “with treatment effect”. The report states no blastema were identified (which was the opposite of what I was told yesterday). The masses had a bland morphologic appearance consistent with Wilms Tumor after treatment.

They will resume with the CT and UCSF pathology report. His case will still be presented at Tumor Board in a couple of weeks. Assuming the post op scan is clear, and the board agrees not to treat at this time, they will take out the Broviac. According to the voice mail left by Diego’s doctor, “All in all this is good news, not scary news.”

Not scary? I don’t know, Dr. Sharma– he ate a lot of our cookies. But if you say so…

fuzzy pathology

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As much as I have been waiting and wanting to give everyone good news, we do not yet have any clear answers. It has now been four weeks since we got the news on Diego’s CT, and there is even more waiting.

The surgeon and Diego’s oncologist have been giving us different interpretations of what the pathologists have to say. The pathology is now going from Stanford to UCSF, and then will go to a national Wilms tumor expert. (This woman, I think.)

We are hopeful there is good news here, that they are just being safe. The surgeon told us a couple of times that the preliminary findings were that the masses were benign and not Wilms tumor. Of course, she is not the specialist. The last word from Diego’s oncologist was that the pathologists found “fibrous tissue with immature kidney cells (blastema)” and she was hesitant to treat him with more chemo right now. Good? Well, not 100% but definitely better than a clear cut relapse, I suppose.

After the 2 additional pathologists weigh in, and after another CT on 4/18 his case will be presented to Tumor Board. (A weekly meeting of Bay Area oncologists.) From there, we’ll be getting a plan. I guess, that’s going to be another 2 weeks…

So his Broviac stays in, for now (sigh). But we pretty much guessed that when the scan did not come back clear. He’ll also be getting 2 sessions of IV antibiotics through it in the next 2 months because he developed yet another antibiotic allergy. He has been on a weekly regimen of the antibiotic Septra since starting chemo, which he needs to continue until he has been off chemo 6 months. Something about being at a higher risk for a rare infection.

Anyway, he is doing and feeling great, so that is what we are going on. His appetite is finally coming back this week, and he seems to emotionally be right back to where he was pre-scan. These are very, very good things. We are feeling hopeful and optimistic, and focusing on the positive.