The Blog

Addison Update

i Jan 24th 20 Comments by

Hi Everyone,
As you all know Addison ‘s test results from her last Friday testing were not we had hoped for. Every time bad news comes knocking at our door, I have to remind myself everyday is a gift for all of us who know and love Addison. She is a sassy little girl with a wonderful smile. She likes to make you laugh with her crazy expressions. She is truly a gift from God for me.

Family for the other thousands of people who are affected by Melanoma also feel the gift of time and love with their loved ones. This is a frighting insidious disease. One day you fighting it the next day you are praying for miracles! Some people don’t understand our fears.

But don’t miss a chance to tell them about Melanoma and other skin cancers. Your determination may save their lives! I speak to young women about the dangers of tanning beds and those golden tans even when I get the eye rolling, please don’t think I am listening look. I know one young lady who even continues to tan a lot after knowing Briana and Addison’s story. There is no telling some people but just keep talking whenever you have the chance. You may be glad you did! I talked to my Dad during a visit even with Briana dying and his great-granddaughter being stage IV he thought he was immune.. Several weeks later he was having a Melanoma removed. My parents are now regulars at their dermatologist. My Dad was always tanning during our summers at the Jersey shore. He raised me that sun is good for you. It isn’t bad for you but protect your self. Sunscreens, hats and only sun time in early mornings or late afternoon.

To all of our friends of Addison’s Army thanks for your love and prayers. Tell someone about Melanoma. You’ll be glad you did! Love ya, G-ma (Grandma Cox)

Comments

  1. Sarah B
    January 27, 2013 at 7:59 pm

    Thank you for sharing this with us all. I speak about Addison and Briana every chance I get. I even got a tattoo in their honor. I attended high school with Briana and was on Pom Pons with her. I am not sure if you know this but sadly Briana was the second person from our high school (graduating class of ’96) to pass from Melanoma and also leaving behind child/children. It is so important to keep talking and to inform everyone of the importance of protecting themselves while out in the sun and the dangers of tanning beds. I look forward to reading more of your posts. ~Sarah

    Reply
    • Donna Cox
      January 29, 2013 at 3:41 pm

      Thanks Sarah! It is nice to hear from people who new Briana. She would be thrilled that her high school friends were talking about Melanoma. She wanted to educate as many people as she could. Addison’s Army was founded on the idea of spreading the word about melanoma, skin cancers, and childhood cancer awareness. Whether you know it or not your actions will save someone’s life!

      Reply
  2. Donna Cox
    February 10, 2013 at 6:20 pm

    It’s about time I update everyone on Addison. We are coming on a period of changes in treatment. Friday we met with Addison ‘s radiology oncologist. Dr Daniels was Briana’s doc for her radiation and Addison has already been treated once. He is a very personable doctor and knows his stuff. He not only practices at Banner Good Samaritan Hospital with adults, he is on staff at Phoenix Children’s Hospital. He wants to radiate a small tumor on Addison’s pineal gland. This tumor is in her brain where the spinal column and brain stem meet. Not a great spot for a tumor and radiation has it risks. This will probably start within the next week. First on the agenda is a special MRI.

    Our second stop on Friday was PCH to meet with the scientist from TGen Research Foundation and Addison’s doctor. The meeting was about the research they have been doing with Briana’s and Addison’s tumors. Needless to say this was too much to explain in this blog but I do know the research will help thousands someday with their tumors especially melanoma. The scientists were very excited to be showing us their findings so far and promised us it is their “Mission” to find a way to help cure or extend Addison’s life. The scientific community is already showing interest in their findings because it is new and different way to look at tumors. We can’t thank them enough for their work.

    Now comes the decisions. 1. Change the treatment to an immunotherapy 2. Radiation? 3. Surgery? 4. Stay on the same treatment?? Please pray for Dr. Hingorani. She has some difficult decisions to make. In the end the decision is James’, but she advises us on what to do. Remember there is no medical treatment protocol for transplacental metatastic melanoma. This the first child to be treated for this. Before Addison the children were only given palliative care…there was no treatment. She is still here with us at almost 2 years. Thank God for research for melanoma. But it still isn’t enough and all childhood cancers only get about 3 percent of all our governments funding. Doesn’t seem fair to me!

    Addison continues to behave like a normal toddler. She is still my curly haired silly goose. The pictures on Facebook show her happy smiling face. That is the answer to my prayers. I will continue to update everyone as we move forward.

    Donna (G-ma)

    Reply
    • Linda Talbott
      February 12, 2013 at 4:29 pm

      Hello Donna,
      I just watched the story on KWCH and felt a need to contact you. My heart breaks as I read Addison’s story and if there is something I can do…to help your efforts, I hope you will contact me. My website tells my story and although I have not been as active an advocate as I once was, I continue to try to make a difference. There are hundreds of links to reliable information regarding melanoma and other skin cancers. The site is set up like a clinic, the home page being “The Waiting Room.”
      I have returned to Wichita in the past 18 months after spending the majority of my life here.
      Please contact me if I can help. My website was hacked and my ‘protected name” stolen by a Chinese
      manufacturer of camera lens. But if you are diligent you can find the original Sunblitz.com.

      http://www.sunblitz.com

      Linda

      Reply
  3. Donna Cox
    February 14, 2013 at 8:46 am

    Thanks for all the info Linda. You certainly have had a battle with melanoma. We appreciate you support. The more we get out to the world about melanoma the quicker we have a cure.

    Reply
  4. Donna Cox
    February 14, 2013 at 8:58 am

    We are in a holding pattern with Addison’s treatment. The decision Tuesday was to wait about 3 weeks to scan Addison again. The hope is that the tumors will back off with an increase of the chemotherapy. She still is as lively as ever. The longer she stays on Zelboraf the better. The other choices are harder for such a tiny little girl.

    By the way Addison will attend the 5k Fun Run / Walk. She would love to see you all there! Don’t forget your sunscreen, hat, and protective clothing!

    Reply
  5. Shannon Fields - Dinkel
    February 19, 2013 at 12:57 pm

    I am so honored to participate in the 5K event this weekend. Briana is my cousin. She was a strong woman! I am glad to help in any way needed. If you need anything, please let me know. Thank you.

    Reply
    • Donna Cox
      February 24, 2013 at 1:14 pm

      Thanks Shannon for participating in the 5K and for your continued support of Addison’s Army. The goal that Briana wanted us to attain was to educate the public on Melanoma. We continue to reach out to everyone so pass the info you find out about Melanoma. Briana is giving us a high five every time!

      Reply
  6. Donna Cox
    March 8, 2013 at 7:39 pm

    I never knew how helpless I could feel until today. Addison hasn’t been herself for several days and now we know why. Scans are done…news as always has it’s ups and downs.

    Today the Addison’s doctor confirmed that there is a new brain tumor (very small) and the pineal gland tumor has grown. All others seem to be stopped for now. Zelboraf doesn’t always work in the brain. The pineal tumor is partially blocking the fluid from leaving the area around the brain which means increased pressure on the brain and the possibilities of all kinds of bad things.

    We are scheduled to meet with a neurosurgeon on Monday the 11th. The discussion is operate and how much or operate and radiate. Everything has it’s up and down sides. Sometimes you just have to go with your gut. I know James has some tough decisions ahead.

    Sooo, Addison may be having surgery. It scares me to think of our tiny little girl facing this but she has the best care possible and family and friends who love her.

    I know God hears our prayers and right now we are doing lots of that.

    Of course I will update everyone after the decision is made.

    Reply
  7. Donna Cox
    March 12, 2013 at 8:07 pm

    On Monday we met with Dr. Ruth Bristol, who will be Addison’s neurosurgeon.
    Friday, March 15, Addison will have brain surgery to remove the tumor on the pineal gland. This tumor has grown and is blocking some of the flow of fluid around her brain. It is definitely a fast growing tumor and hopefully they can remove all of it. She will be in ICU for a few days until the second surgery to remove the other large tumors. The small one will have to put on hold for now. Her entire stay will be about 10 days. The dangers of these surgeries is loss (although it is usually temporary) of motor skills. Dr. Bristol has a great track record on these surgeries.

    In the meantime we watch her carefully, try to get all the nasty medicines down, and bribe her with M&M’s to eat something. As I put it she eat anything she wants as long as she eats. She’s not fussy but she doesn’t feel like eating. At least she takes 8 to 24 ounces Boost Kid’s Essentials 1.5. Lots of vitamins and calories.

    My next post will be after Addison’s 1st surgery.

    Thanks for all of your support!

    Love, Grandma (Donna Cox)

    Reply
  8. Donna Cox
    March 15, 2013 at 9:28 pm

    As everyone has seen on Facebook, Addison continues to show her strength and determination to fight Melanoma. She such a tiny little girl but she has the heart of a fighter.

    To be honest this has been a long exhausting day for our family. We appreciate everyone’s prayers and love. We all plan on taking turns by her side until this is over so as things improve we will do our best to keep everyone updated. If you don’t hear much from us it just means we are getting a chance to take a nap and boy do I need one.

    Love, Donna (Grandma Cox)

    Reply
  9. Donna Cox
    March 17, 2013 at 10:41 am

    It’s another beautiful Phoenix day and our little girl continues to improve. She has had 4 bottles of her special “pediasure drink”. Lots of calories and tastes like a milkshake….kinda. She is responding well and has even improved enough to get “mad” at me! I’ll take it!

    She just got done watching “Brave”. And is getting ready to go back to sleep…with her Big Cissy Bear at her side. Today she will even get a walk outside of her room with Daddy. They have kiddie wagons and wheel chairs. The downside is (and there usually is) that by the time she is doing much better it is time for the second surgery. YUCK!

    The staff at Phoenix Children’s Hospital is awesome! Can’t say enough about the strength and caring they give us. Addison couldn’t be anywhere better.

    Love, Donna (Grandma Cox)

    Reply
  10. Donna Cox
    March 20, 2013 at 7:41 pm

    Addison is sleeping peacefully right now. She made it through her surgeries, is staying on track like her docs want, and getting back her feisty attitude. Her Addison’s Army family has been right there with her….praying and caring. Grandpa and I get to catch up on our Disney movies. She watches everything until her eyelids close. She and Grandpa like their naps.

    I’m looking forward to having her home sleeping next to me in our chair or dancing to music in the middle of the floor. She is quite the “Glee” fan. David, Addison, and I sing our favorite country songs when we are out on the road. Addison loves music and dancing! David is getting real good at singing, too. It must be in their genes.

    Hopefully she will get to go home this weekend. She is still facing the monster “MELANOMA” but he lost this round!t

    Love, Donna (Grandma Cox)

    Reply
  11. Donna Cox
    March 25, 2013 at 11:20 am

    Our little angel got her brain fluid tube removed an hour ago. No anesthetic, they held her still, and not one scream, not one tear, and they stitched the area closed. Just a few but our little warrior was great! She is resting and holding her bear. I am amazed how much this child has had to go through and she still is so good. As you can tell I am a very proud grandma.

    She will probably go to a regular room tomorrow. And hopefully home before Easter. Tomorrow physical therapy will start getting her back up sitting and then walking.

    Love, Donna (Grandma)

    Reply
  12. Donna Cox
    April 27, 2013 at 8:24 pm

    I have been thinking a lot about what Addison must be thinking as she sees a steady flow of doctors, nurses and guests go in and out of her room. I know what I am thinking…this is not the way a two year old should be spending a beautiful Saturday. She is already 100% better than she was. Swelling gone and appetite back! But days of drain tubes and tests still loom in the future.
    Okay, back to her thoughts….”oh, look another person to bother me” or ” wow, this is crazy…who are all these people” or “did you bring the M&M’s cause Grandma says her stash is all gone”. And then we have the late night checks…”hey I was sleeping…lights in my eyes…really???” Or “yes, that machine is driving me crazy BEEP… BEEP …just turn it off!”. The pain does not seem to be more than a headache or a pinch. And yet she still is feeling good enough to laugh at David or Brandon. Kids are really resilient! She has a concerned look when another child cries down the hall. Sometimes I expect her to stand up and leave…I know she won’t but she is strong. She is fighting so hard and she makes us laugh. Melanoma be damned, she is doing her thing.

    Today I was going through the pictures in my iPad with her. She loves that. Sooo I decided to ask everyone for a special gift for Addison. Please send her pictures of you, your kids, your pets on Facebook. The crazy, silly pictures! She’ll love it. Make sure put names with faces. The best silly face will get a free Addison’s Army t-shirt! I can’t wait to see her smile and giggle. On your marks, get set, GO!

    Love, Donna (Grandma)

    Reply
  13. Donna Cox
    April 28, 2013 at 7:24 am

    I am not very technically inclined so Kim is going to upload everyone’s photos from text messages to her. If you don’t see your photo posted on Addison’s Facebook page please text to Kim at 316-259-0677. Sorry for the confusion.

    Love, Donna

    Reply
  14. Donna Cox
    April 30, 2013 at 9:14 pm

    Big kisses from Addison! She has seen all the pics on Facebook and smiles and giggles as we go through them. Can’t decide on a favorite quite yet but I promise we will have a winner of an Addison’s Army t-shirt by Saturday. They were all great. I can’t thank you all enough for your efforts.

    Love, Donna (Grandma) and Addison

    Reply
  15. Donna Cox
    May 3, 2013 at 11:18 am

    Addison update: Today Addison had a VF shunt put in just an hour ago. Her body told the doctors that it did not want to drain the brain fluid without assistance. She was in good spirits this morning and we are too because she will probably be able to go home tomorrow. Sometimes we don’t get what we pray for but God has a plan for Addison and I have to accept that! She’ll be home for her 2nd birthday. Another milestone!

    Love, Donna (Grandma)

    Reply
  16. Grandma
    June 26, 2013 at 6:55 am

    Today, Addison has radiation treatment for the return of her pineal gland tumor in her brain. She will undergo 3 treatments. She is still the same happy girl she was 2 years ago, but once again faced with life threatening tumors. I can’t say I don’t worry about this. Everyday is a gift, but…… . I keep telling everyone how strong she is but somedays she is a tiny little girl scared and tired. She has the best care, wonderful doctors and nurses, and a strong, loving family but no one can protect from this melanoma monster! Today is the first day I am not there to hold her hand when she wakes up. When I returned to Texas I knew that I would have a hard time when this stuff happened. It consumes me! She has her strong, capable Daddy. She has her family, friends and supporters. She has God’s love! I’ll just be holding my breath until I hear that the radiation worked. I am just plain overwhelmed today. Take care Silly Goose…you may not see me but I am there with every ounce of my being.
    Love, Grandma Cox

    Reply
  17. Donna Cox
    July 30, 2013 at 8:47 pm

    Time for an Addison update. Lately the news has been tough to write about. Today is no exception. Addison’s melanoma continues to rage in her tiny body. Radiation was not that successful. Her pineal gland tumor continues to disrupt the flow of brain fluid. Yesterday she had an emergency brain surgery to improve the flow that even her shunt could not handle. She went home today though and James tells me she is still tired but happier. Tomorrow I was going to be telling you about her big trip to the National Cancer Institute to enter a clinical trial for a drug called “Yervoy” (ipilimumab) . The drug could give her a better chance at survival, even if just a few more months. Her trip is on hold. Too risky for her to fly out there. “Ipi” as the cancer docs refer to it is a powerful immunological drug. The side effects can be awful. The drug has mostly been used on adults. Once again Addison joins a group of pioneers in finding a cure for melanoma. This has lots of “what if’s” attached to it. The pineal tumor has to be stopped. It definitely is life threatening! So today as I pass on the news I ask for your prays. I want Addison to be around for the day they find a cure. Hopefully she will be able to continue her journey to Maryland for treatment next week. By the way Addison’s doc at Phoenix Children’s is pregnant and she needs prayers too. She continues to work even through some rough patches with her pregnancy. She has been our voice of reason for 2 years and is always there for Addison. Once again I have to say the staff at PCH has been so good to all of us. The next few weeks will be so important for Addison. But there is one thing I know she has lots of love to carry her through … Thanks to each and everyone of you reading this. Love, Donna (Grandma Cox)

    Reply

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