Friday, November 22, 2013

Showerheads & side effects

Madeleine’s Blog

November 22, 2013
So do not fear, for I am with you
Do not be dismayed, for I am your God
I will strengthen you and help you
I will uphold you with my righteous right hand
Isaiah 41:10

Courtesy of "Monkey Wrench" plumbing

Sometimes it is amazing to think of all the people who have helped us during this time. We have definitely been the beneficiaries of so many people's kindness - too many stories to list, really. 

One example: This week, Deanne called a local plumber (someone she knew from teaching their children in years past) to come out to the house and put in a hand-held shower head for Madeleine and to fix some other faucets. (A shower head like this is wonderful for those who are battling cancer because you can direct the water away from chemotherapy "ports" and medication patches, etc.) When it came time to pay for the work, the man said, "No, why don't you just spend that money on your daughter instead?" and then he made his way out the door. Brings tears to my eyes. Such a practical blessing in the midst of this battle. Thank you to the family behind Monkey Wrench plumbing!

This week marks one month since Madeleine began the new clinical trial drugs that she takes daily. She has blood tests each week to monitor levels of everything imaginable in her blood. The tests show that some of her blood levels (ones that had risen dramatically just before she began the trial) are now heading slowly back down, dropping a little each week. This is encouraging, as well as the fact that she still is no longer needing pain medication for her tumors and only occasionally has a fever (instead of the nightly fevers she had before). We won't really be able to tell how things are doing until her scans in mid-December, but are thankful for the things that are heading in a better direction.

At UCSF this week, Dr. Daud was very helpful in helping come up with solutions for some of the side effects of the drugs that Madeleine has been experiencing. Since starting the new drugs, she has had to deal with rashes on her body and face from the medications. Now we have some topical cream to help with some of the worst of that. Probably one of the worst side effects is all the inflammation in her mouth, which has made it so difficult for her to eat. Dr. Daud also had medication ideas to help with that, and so we are hoping that Madeleine will be able to be a lot more comfortable soon. Dr. Daud said that the good news about the rash is that it is an indicator that her body is definitely absorbing the medication, but that it was time to deal with the side effects.

We also found out this week that Madeleine's melanoma is "NRAS," which is a mutation found in about 15-20% of people with melanoma (she has previously tested negative for Braf, and is also negative for c-KIT). To most of us, that just sounds like a bunch of alphabet soup! But to researchers, it helps to narrow the treatment focus a little. It is all very cutting edge stuff, but we are very fortunate to be involved in a clinical trial right here at UCSF that is working to target melanomas with that mutation.

Yesterday, it was time for another blood transfusion in order to help with Madeleine's low counts. At the Kaiser infusion center, the nurses are so kind and attentive to Madeleine (and Deanne) that it feels like you are sitting in a little oasis of TLC whenever you go there. Warm blankets, snacks, concern, and conversation help to make being there so much better. Getting the transfusion is a several-hour project, so that was the day's work yesterday! The good news is that Madeleine's red blood cell counts are dropping much slower than they were when she first started the medications, so we are glad for that. Hopefully having a little more hemoglobin will help with her energy level. That, and being able to eat a little better once the medication takes effect. 

As always, thank you so much for your continued prayers for Madeleine and her family.


Lucy said...

Glad to hear you are being treated at UCSF. I was treated there 13 years ago. Hope all goes well.

Dave Cindy said...

Hoping and Praying the side affects slow down for you. You go Little Pill lets kick this Cancers Ass!
We love you Our Sweet Girl XOXOXOXO

Auntie Leslie said...


Stacey said...

Perhaps you could get a Little Mermaid shower curtain. You know...a life-sized image of a purple skinned character reaching toward you with its many tentacles...

In all seriousness, though, I think that is wonderful that you have a comfortable and effective place to shower now. What a great guy your plumber is! And it made my whole day to hear that your treatment is making progress. I couldn't stop smiling. (As a side note, you would be amazed at how much it freaks High School kids out when the teacher can't stop smiling.). Hope the side effects are less miserable. We are continuing to keep you all in our prayers over here. Enjoy your Thanksgiving.

Love & Hugs,

Anonymous said...

Glad to hear things r a little better ...may u all have a wonderful thanksgiving day with family and friends...thought and prayers...Sharon ius

Anonymous said...

good to read the news... and will keep the name of monkey wrench plumbing in our file for the next time we need work! wonderful story.

Anonymous said...

We love you Family and would do ANYTHING for any of you, we are only a call away ....... xo's the Dooley's