Thanksgiving

Madeleine’s Blog

November 29, 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

From Madeleine's Facebook on Thanksgiving:

Life is precious. Life isn't always easy. Life is beautiful. Life is amazing. We have so much to be thankful for in life...

Thanksgiving 2013

I've been through a lot during this past year. I am so incredibly thankful for the people in this picture, and many others. I don't know how I would make it through without them. God is good ♥

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.

Reflections on Make-A-Wish

Madeleine’s Blog

November 16, 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

From Madeleine's Facebook today:

"Bat Kid" is the perfect example of what an amazing organization Make A Wish is and how giving our community can be. 

Make a Wish: Celebrating "Bat Kid"!

As Make A Wish says, 

Our mission: We grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength, and joy.

No, I do not know "Bat Kid" personally, but I know the joy and happiness that that little boy is feeling. Thank you to all the individuals who participated in making his wish come true.

I am forever grateful to Make A Wish for the experience they gave me, and all the ordinary people who gave their time and money to make my wish come true and give me greater determination and want to keep fighting. 

If you ever think about donating to help children with a life threatening illness, Make A Wish is the organization. You go, Bat Kid - keep up the fight!!"  
~ Madeleine

Madeleine - enjoying the fall weather today!

Keeping up the fight!

Madeleine’s Blog

November 15, 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

Deanne & Madeleine

It has now been just over three weeks since Madeleine started on the new clinical trial drugs, and so it's definitely time for an update.... A little over a week ago, Madeleine's mom decided to take a temporary leave from her teaching job in order to stay home with Madeleine and help her get better.

Here is from Madeleine's Facebook:  

"My amazing mom - who has been so incredibly supportive - decided to take leave from work. I just wanted to say thank you mom for being there for me every day and comforting me when I feel sick."

On Deanne's last day of work, the teachers (and other employees from her school) surprised her with so many special things -- among them a gift basket for Madeleine filled with a special blankets, hats, booties, gift cards, and many other wonderful things. What a blessing -- those items have already been put to use!

Meanwhile, Madeleine has been taking the five "clinical trial" pills early every morning (which at times is hard to do on the required "empty stomach"), but she is managing to keep them down now.

It is hard to know how things are really going with the trial, but there are a few good things that we can see. About a week after she started the new pills, Madeleine decided that she no longer needed the round-the-clock pain medications that she had been taking for the abdominal pain from her tumors. Also, the nightly fevers that were related to the tumors have now disappeared. So those are some good changes that we see.

Probably the hardest thing for Madeleine, though, is how tired she feels and the lack of energy that she has. This is a huge lifestyle adjustment for her, but it is a part of her daily battle. She goes in for blood tests here at our local Kaiser fairly frequently in order to monitor her blood counts. Two weeks ago she received two units of blood, since her hemoglobin had gotten quite low, which helped some with her energy.

Last weekend, Madeleine was able to go up to the family cabin at Mt. Lassen to be with her great aunt and uncle and family for the annual "choosing and cutting" of the family Christmas trees. It was so restful to be at the cabin, and while Madeleine didn't have the energy to go out hunting for the tree, she did enjoy being there with family whom she loves, and in a place that she has always enjoyed.

Thank you for your prayers for Madeleine and her family. We are continuing to pray that she will be able to manage the side effects of this treatment, and that she would be completely healed. Thank you, everyone, for your support and concern.