Pablo Update

Today was a busy day. I've been lucky enough that my work has allowed me to work from home for the past few weeks so that I can keep an eye on Pablo and today I had to go into work for a little bit so I brought Pablo with me. Once I finished showing off his big brain tumour scar to my co-workers, I took him to see our family doctor.

Pablo has had a couple of episodes in the last few days where his right side has gone quite numb and his chest has felt heavy. It is possible that these were seizures and I say that because some blood work results came back that showed that his levels for an anti-seizure drug he is taking were REALLY low. The drug is called Dilantin and his levels should have been between 40 and 80 and his level was a 22. So the dose of Dilantin that he is taking daily is not sufficient and that has now been increased. Over the last couple of days, Pablo has also started weaning himself off of the Decadron (steroid for anti-swelling) and the Dilaudid (derivative of morphine). Due to this, he has been more agitated (withdrawl from morphine) and he finds his head and jaw are hurting much more. He's having a really hard time opening his mouth even half way.

Pablo's been doing a ton of research on the 'next steps' and he's come across some interesting statistics on his type of tumour. Pablo's tumour was a Grade II atypical benign meningioma. 7% of people with meningiomas will have this Grade II atypical kind. According to Wikipedia: In the case of a Grade II or Grade III meningioma, the current standard of care involves post-operative radiation treatment regardless of the degree of surgical resection. This is due to the proportionally higher rate of local recurrence for these higher grade tumors. Up to one third of people with meningiomas who undergo an operation will be left with obvious residual tumor. More than half of people with residual tumor after an operation will have regrowth of the tumor by 10 years's time and about 10 percent will not have had regrowth by 15 years's time.

While Pablo was researching radiation treatment, he came across proton therapy. Proton therapy is a type of particle therapy which uses a beam of protons to irradiate diseased tissue, most often in the treatment of cancer. Proton therapy is most effective against rare tumors in confined spaces because the technique is so precise it limits potential side effects and spares healthy tissue nearby. Radiation has a 4-5 mm room for error (zapping healthy cells 4-5 mm from the tumour cells) whereas proton therapy is only around 1mm. Proton therapy is much more accurate than radiation. The only problem is that there are no clinics in Canada that do proton therapy and there are only 4 (I think) in the US. Pablo contacted one of these clinics and the cost for a round of treatments (that would last around 3 months) is around $50,000-$60,000 US (and possibly more...). That doesn't include room and board for those months either since Pablo would have to re-locate during treatment.

So, more research and more doctor's appointments...


  1. Health care should not be so expensive. Sigh.

    I do love the thought of Pablo as show and tell at work however. ;-)

  2. ((((((Julia+Pablo)))))),


    I'm glad your steps are further and further away from the surgery, Pablo. You look strong and healthy in your 'haircut' picture.

    I wish that you didn't have to go through both pain and withdrawal from those darn drugs.

    Julia+Pablo, I see that one of the proton centers is in Boston, MA. I'm about 10 miles northwest of there. I live in a studio ... so, regrettably no room for guests. But, there are a lot of hospitality suites around here. And, I'm good at doing research. Let me know if you need me to contact anyone on this end. I'm more than willing to.

    Collette is right ... medical care shouldn't be priced so outrageously ... anywhere in the world. AND, her word image of show-and-tell at work with Pablo is priceless :grin:

    I'm glad to see your babies having fun and smiling. Warms my heart.

    Hang on tight, you two. And BELIEVE. There's a lot of love and support and prayers surrounding all of you. BIG HUGS.


  3. Barb,
    I have been talking to the Proton clinic at Luma Linda Univ. just South of LA. Although the one in Mass, is thousands of miles closer. After doing my homework, it would be in the 55,000$-70,000$ range including living expenses that would have to be payable in one shot, as a non-US resident. Although, I would go to either Cali, or Mass, as you both wisely voted Blue in '08! (Been Following Obama's career since the year 2000)

    I must say I always enjoy reading your comments, along with the other "regulars" You guys make my day better, and I appreciate the support you offer Julia.

    And yes, Collette, you are right! Although health care in Canada is mostly covered, it can get costly!! unfortunately the only Proton therapy offered in Canada is out west in British Columbia, and only for eye tumors. Besides its also only covered if you are a BC resident, so I would not be anyway.

  4. So glad to hear Pablo is feeling better. Getting off those meds can be tough!! I've been reading your blog for a while and the news about the tumor took me by surprise. You guys are about my age, and this is something that could happen to anyone!! I live close to the Loma Linda Univ Proton therapy center. They seem to have an amazing facility, although the price is very high!! You guys are more than welcome to come stay in my house for whatever time you need. It is about a 30 min. drive, but it would save in lodging expenses. Please let me know if there is anything else I can do to help!! Best of luck!

  5. That's incredibly kind of you L to offer your place. I'm really touched. First we have to figure out how to get $55,000+ (legally of course). We'll totally keep you in mind just in case... Thanks again!!!

  6. Ah Julia, it's the legally that's the kicker, huh? ;-)



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