Difficult news

I am not sure how to begin this blog so I will just come out and say it.  Last week I shared with you Maddie’s inspirational story – she is an 8-year-old girl who has been struggling with leukemia more than half her life. Her parents had sought out a highly experimental immunotherapy. When I met her just a few weeks ago, it was clear the therapy was having a powerful effect on the leukemia and she was back to being a vibrant 8-year-old girl.

This week, I learned the sad news that Maddie’s leukemia has returned, and that she and her family are considering next steps.  The cancer researcher in me is not surprised and sees this as further evidence we must proceed with research at all deliberate speed; my human side is devastated.  Our thoughts and prayers go out to Maddie and her family at this difficult time.

Ironically, I learned this news on the same day that our federal government shut down.  Indeed, the email telling me of Maddie’s relapse was sandwiched between two emails from colleagues at the National Cancer Institute (NCI) announcing they were being placed on furlough due to the shutdown.  What does this mean? In addition to all of the issues you heard about in the news, it means the suspension of new NCI clinical cancer trials and review of new grant proposals. NCI employees are now legally forbidden from contacting cancer researcher collaborators across the country. There is no question in my mind that the progress of cancer research will be slowed.

Last week, I described how Maddie had matured beyond her years.  She has a remarkable understanding of how her personal story impacts the bigger picture, yet still enjoys being a young girl.  Sadly, she once again has to put those childhood pursuits aside to deal with an incredibly difficult challenge.  Meanwhile, our congressional leaders continue to act like poorly-behaved children and focus on themselves, and not on the very real needs of those they serve.

There is an awful symmetry here, and it leads one to think about what would happen with respect to setting priorities if roles were reversed.  If our congressional leaders were in Maddie’s shoes (or those of her parents), would that change their approach?   I think it would.   And how about the other way around?  I am not one to quote Bible verses, but Isaiah 11:6 seems particularly poignant to me at this point in time: “and a little child shall lead them.”

If only it were so…

2 thoughts on “Difficult news

  1. Claudia Cunningham

    I am a survivor of breast cancer whose daughter had to watch me lose my hair, stop the car to vomit on the highway, and all but abandon her for 3 years due to the devastating effects of chemotherapy on my body. Just as my hair was coming back in and things were starting to seem to normalize a bit, she told me that she “still had that lump on her neck that she’d had a week ago.” It turned out to be thyroid cancer. She was 13 by then. She had seen what “cancer” looked and felt like, and she then had her entire thyroid removed, followed by radiation treatments. A year and a half later, we discovered that our home had radon in it…a reading of 19. Our bedrooms are in a daylight basement…our daughter had been breathing that poison since she was 2 years old, and there were no laws governing disclosure, nor had anyone so much as mentioned that we check for it. And sadly, we didn’t know that should have. All this is leading me to telling you that once we discovered the radon and that my husband’s PSA was sky high, he chose NOT to go the conventional route, but rather, to seek out other solutions. He studied hard. We are all now changing the way we live, and especially what we eat. I am not going to try to sell you on any idea, but one of the most helpful websites on the subject of cancer cures and nutrition is one called CHRIS BEATS CANCER. http://www.chrisbeatcancer.com/ I have told you our story only so that you may know that I share some small experience with the horror of having your most precious child attacked by cancer, and that the powerlessness that we feel as parents is not unknown to me. I believe now that there is MUCH more we can do to cure cancer and prevent its recurrence. And whether you choose to look it over or not, I feel I must at least introduce this to you, just in case you haven’t seen or heard of it yet. I believe in prayer, big time, and so I will include your family in my prayers now, for all the forces of Good and Love to come to your aid. I am so very sorry for the pain and fear you are enduring. Please count me as one more person who is thinking of you and praying for you. God bless you always.

  2. AnnKC

    Thank you for your investment/interest in cancer research. I am so so sad to hear that Maddie has once again relapsed and livid that her access to front line therapies are halted now due to our political “leaders”.

    My brother has been fighting a battle again ALL for almost 2 years. He didn’t respond to conventional therapy (MRD +) or a bone marrow transplant (MRD +). He relapsed about 12 months into his journey. He considered moving for a trial (he’s at UCSF) and considered either Philidelphia, a trial in Seattle ( for a different T-cell therapy -I think), or a site in LA. While researching options they gave him chemo with Rituximab (even though he has CD 19, not CD 20) and high dose steroids (plus Aspiriginase – I think). Since February he’s been MRD negative!! (He had 4 rounds of that chemotherapy regimen.) We are so thankful but know he may need/will likely need access to new therapies in the future. Unfortunately, he has horrible side effects from the chemo drugs and is in constant pain and has very limited mobility (stress fractures, AVN of multiple joints, and most limiting is severe neuropathy – the worst case his neurologist has ever seen). Looking forward to less toxic, yet more effective therapies in the future!

    I can’t imagine being in Maddie’s parents position – feeling completely hopeless since the only chance for their daughter (most likely) has been taken away from them. I hope the handcuffs are taken off of the researchers and trials ASAP!

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