Jun 2, 2013

Glioblastoma

Glioblastoma is the most aggressive of malignant brain tumors, Pigtail's mom was diagnosed in 2007.  Treatment and remission for years, then it came back late last year.  More flasks of chemo, but no go.  Her latest MRI was in bad shape, the tumors are ignoring treatment.  Her speech has degraded significantly over the last two months, to the point where a simple conversation on the phone discussing a weekend handoff crawls and takes 10 minutes.



P's mom decided to stop treatment.  Hospice is visiting her apartment once a week to help.  She lives with her boyfriend, I'm glad she's not alone.  Seizures are frequent, daughter is afraid to be with her for long periods of time.  Daughter cried and asked why her mom is giving up on chemo.  She'll soon move out Des Moines into hospice to be closer with her family.

We talked and apologized for mistakes we've both made.

Pigtails and her mom wanted to do a final trip together to Disney this summer, but her health won't allow it.  Instead, they're heading north with Aunt Angie to the Mall o' America, doing the American Girl Doll thing and tea time.  She's excited, talks often about picking out a doll that looks like her, with freckles and brown hair and a retainer if they offer it.

My next door neighbor has the same type of brain cancer.  He's about my age, has four kids, was diagnosed last year and is doing well after surgery to remove the tumor.  Glio' is rare, 2 or 3 cases per 100,000, so I'm scratching my head wondering if it's more than coincidence when two people that lived next to each other have the same type of cancer.

I've been trying to maximize the time the kid spends with her mom.  But balancing that against Pigtails saying she's not always comfortable being there when she can't talk and afraid her mom will have a seizure.  We'll keep our summer plans open so they can spend time together on days when she's feeling better.

-Beard

17 comments:

  1. Will be keeping you all in my prayers. Such a difficult situation for a "little" girl to deal with.

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    1. The earrings are distracting her in a good way, she's prancing around the living room like an Arabian horse.

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  2. Someday Pigtails may feel guilty that she didn't spend more time with her mom because it was scary and sad...so while you can't push her to do it, it's good that you support her bravery in the face of this grievous situation. What a terrible thing this is! I think you're doing a good job walking the tightrope, Beard.

    It would be interesting to "map" the incidence of this type of cancer in your area. It's hard not to wonder about that, isn't it? Would the CDC know? Radon? The water? Troublesome...

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    1. I've been reading up on radon, water cooties, causes of cancer and yadda. Radon results in lung problems, brain cancer hasn't been directly linked to anything yet, other than certain types of medical scans can raise the risk. Research is inconclusive on cell phone radiation being a trigger. At any rate, I'm heading in for a shower now, just in case.

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  3. I agree with you on not pushing Pigtails. She will always have 'regrets', there is no way around that, but preventing her from being in a position where she is powerless to help her mom is important. I watched a close relative have a seizure and it traumatized me for quite a while afterwards.

    Cancer makes no sense. We had a patient last year, 7 years old, who was diagnosed with cancer. A classmate had been diagnosed three months prior, and another was diagnosed four months later. Talk about 'coincidence', try explaining three girls in one classroom.

    I'm glad for you both that you had a chance for some closure. Your family has been on my prayer list for a while now. Praying God's strength and peace with you all. Lots of love from Miami.

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    1. I regret not nabbing a second helping of Saucy Pig smoked pork tonight at Cactus Bob's.

      Daughter understands the importance of spending time with her mom through these sunset days. I've been driving it without forcing. Trouble is their time together is not of the high quality variety. Her mom is mostly quiet on visits because forming words is difficult. The risk if seizure is high, so we've trimmed down visits to afternoons or evening dinners. This works well for everybody. Their trip next week to Mall of America will be something Pigtails cherishes.

      Thanks for the prayers of peace.

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  4. Melissa C.6/03/2013

    My heart goes out to you and Pigtails. What a difficult and frightening time. I'm 36 and am facing the decline of my own mother (age 62) to glioblastoma. I wish you both the strength to face this together.

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    1. Sorry to hear that, hang in there. Too many people I know have glioblastoma.

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  5. Ugh, so awful. I lost my dad to cancer at the age of 13. Different situation as far as time line goes, he was diagnosed on a Friday and gone by Sunday. So there wasn't much time to even get used to the idea, but I definitely have regrets of not spending the time that we DID have. If I may be so bold, I would suggest doing whatever it is that would make her visits feel comfortable to her. It sounds as if they are becoming fewer and she'll be angry at herself in the long run, even if it doesn't feel good to her now. It's a lose/lose situation, either way, I suppose.
    I'd be extremely leery of that "coincidence" - may be worth looking into, if anyone was willing to disclose truthful information.
    Best wishes for making the best out of terrible circumstances.

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  6. Praying for Pigtails mom, Pigtails, and you and Curls as you walk this road together.

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  7. Anonymous6/03/2013

    This is bad news. Lost our dear friend to this. Still stings.

    Pigtails is lucky she has you. Keep running and eat your greens.

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  8. My heart breaks for you. Nothing worse then seeing a child struggle with the profound heartache of losing someone who should be here to see them grow.
    My cousin who also grew up on Southside of DSM (now lives in AR) was diagnosed with this same kind of brain cancer 4 years ago. She survived the treatment, her doctors keep her on monthly chemo (7 days a month) because even with out visable tumor, they don't believe glioblastoma ever truly goes into remission. She is now 35 and doing well.
    My prayers & thoughts go to you and pigtails during this sad and difficult time. The memory of mom, will be forever cherished because of everything you are doing for your daughter.
    Making sure important people teachers and care providers know what PTs is going through may also be helpful.

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  9. She couldn't have a better father to get her through this. I used to work for a company where a ridiculous number of my ex-coworkers have been diagnosed with cancers of all kinds, from pancreatic to a rare lung cancer that has nothing to do with smoking. It was a white collar office environment, not, say, asbestos removal, and in a high-rise downtown office building. More of the cases have been fatal than not, and it has always seemed suspicious to me. I think environment has a big part to play in cancer, but we just haven't been able to nail down all the culprits yet. I wish a speedy resolution to this pain for Pigtails and her Mom.

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  10. This all sounds so hard, especially for Pigtails. I will be praying for her.

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  11. Oh, Beard, this is difficult any which way around. All the best and prayers to all of you.

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  12. Just found your blog because of the GBM post. I'm so sorry your daughter is having to deal with this. Hopefully they will be able to get your ex on some seizure meds that will keep them under control. There are some tools that might help your daughter understand a little more about seizures here: http://www.epilepsyfoundation.org/livingwithepilepsy/parentsandcaregivers/parents/helpingothersunderstand/explainingepilepsy.cfm

    It is a scary thing to watch. My son passed away last year from GBM, so I know a little of what your daughter is experiencing. Maybe someone she is comfortable with can also go with her when she visits her mom?

    It's such a scary time, and it sounds like you are being a very supportive person for your daughter. Good for you for making sure they get quality time together now.

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Thanks for the note, check back for my response!