Katherine’s Story

Site created on November 26, 2005

On Oct 28, 2005 Kate was diagnosed with St. IV Neuroblastoma.
On Dec 14, 2007 She relapsed in her orbital bone.
On Feb 20, 2010, She relapsed a second time, in her original tumor bed in her abdomen.

Now - January 2014, she is still being treated at Sloan Kettering and Riley Children's Hospital. And scanned every 2 months - but they are starting to say things like "Maybe she has this thing beat!"  We are praying that this is the case!!
 After approximately five weeks of vague symptoms that ranged from knee pain to general lethargy, Kate was diagnosed with cancer on October 30th, 2005. The following week, we were told she had Stage 4 neuroblastoma spread to her bone marrow. This type of childhood cancer has very vague symptoms and 70% of the cases are initially discovered at stage 4. Kate's initial treatment consists of six cycles of very aggressive chemotherapy to shrink the tumor so that it is small enough to operate on and hopefully, remove all. Kate has been through two surgeries, and while they were able to remove a great deal of it, the tumor has encased the blood supply to the large intestine, and some of it had to be left in that area. A planned 4 hr surgery took almost 9 hours, and a planned four day hospital stay turned into two weeks - and they didn't get it all. Her recovery from surgery was very slow. We were told that many three year olds would not have been able to survive her post surgery complications. That she is a fighter and God was merciful to us. After surgery was another round of chemo and the most extensive and excrutiating round of pre-stem cell transplant testing to make sure "disease was stable" which meant, that it had not become resistant to the chemo and spread. After the testing was complete was the bone marrow/stem cell transplant was started on May 16, 2006.

Technically, the bone marrow/stem cell transplant is more of a "rescue" than a "transplant" since she is getting her own banked and cleaned cells back.

The first part of the Bone Marrow/Stem Cell Transplant procedure is what they call "high dose chemotherapy". It has been explained to us as a lethal dose of chemo that the first, most dangerous side effect is that it kills the bone marrow. (Other chemo rounds she has received only temporarily knocks it out) There are other side effects that are very dangerous but they try to support the patient as needed with blood, platelets, antibiotics, antifungals, liquid nutrition through the vein and pain control as the patient both recovers from the high dose chemo. They give her four days to clear the chemo drugs from her system, and give her the new cells - the transplant- to become established in her bone marrow.

It was an eye opening experience. Her stem cell high dose chemo has been referred to as the "bloody mouth protocol". And, oooof, were they right. Swollen cheeks, and - well, lots of blood from sores in the mouth.

Two weeks later, after we though she was on the upswing in recovery, she developed the complication of VOD - venous occlusive disease of the liver. That was the sickest we have ever seen her. She surprised the docs with how late in the process she developed it. It was awful - the most challenging two weeks we could ever have imagined. God is good, and used an experimental drug that is only approved in Europe to help break it up. The journal between June 5 and 15th tells the story.

She has been such a fighter - and been through so much. She has had radiation to the abdomen twice and her orbital bones twice.

 

She then had CH14.18 Monoclonal Antibody Therapy . The treatment was hoped by the docs to be an advancement in the treatment of Stage 4 neuroblastoma. The therapy tries to teach the immune system to recognize neuroblastoma cells as enemies and destroy them. It has lasted about six months with many hospitalizations and is considered extremely painful. The hope is that this will put her into remission and keep her there. Her scans after this were clear but, as of Dec. 14, 2007 we found out she had relapsed in her orbital bone. This has been treated with two rounds of high dose cyclophosamide chemo and two rounds of radiation to the orbital bone and lots of low dose chemo. Some 3f8 monoclonal antibody treatment, early HAMA. Ineligible for any more.  

After many rounds of low dose chemo, she relapsed again in her abdomen in Feb 2010. Another resection at Sloan-Kettering to get it out. Followed by more low dose chemo. They want to give her high dose but her bone marrow no longer recovers from high dose. 


 We are now facing messed up liver functions that are making them scared to treat her. They don't want to push an irritated liver into liver failure. Toxic side effects are determining her options now. We don't have many options at this point, and she still has disease.  

We are focusing on the positive and continuously lifting her up to God. We continue to ask for prayer for Kate's healing and strength for us all.  We firmly believe in the power of prayer and God's ability to heal if it is His will to do so. - Trish and Pat

Newest Update

Kate - Dancing in the Nutcracker - Dec 15, 2018

Journal entry by Trish Madigan cb:katemadigan —

So I logged on to Kate's Caringbridge wondering.... "Is this a thing? Does it still exist?" and yes - it still does. I noticed that I haven't actually updated this site since she was 13 and getting ready to start middle school - and she just turned 16 and is in high school now...  hmmm... it seems well overdue.

We have had the blessing of not living in the cancer world - no scans, labs once a year - but we don't hold our breath waiting to see if she has platelets or if she has white blood cells... or lay awake all night worrying about if her 10 times normal liver enzymes will keep her off treatment. Our life has become strangely normal.. her ups and downs are now driven by the agony of pop quizzes, project deadlines, Spanish tests and the lack of her favorite junk food in the house if I don't get to the store- so I don't often think of documenting it on Caringbridge.

But this raises the other question.. the site exists- if I post an update - will anyone read it? Do the emails that we all used to get notifications still work? I guess I will find out!

But this Christmas -I have been thinking of everyone who prayed for her...  I have felt like I needed to post an update.
A praise  ...   We have been blessed. We have had so many people praying over the years - and she is healthy and  dancing this Christmas. If you are around Columbus on Saturday, Dec 15, She will be Clara in the Dancer's Studio Production of "The Nutcracker"...   Please join us if you are able!  Tickets are availablee at the door - and it will be in Columbus  North Auditorium at 2:30 pm.

I will be the lady in the front center row quietly sobbing my eyes out in overwhelming gratitude that she is here to dance.

I have attached a link to a newspaper article about the production in The Republic.

http://www.therepublic.com/2018/12/13/a_dreamy_holiday_tale_annual_nutcracker_shows_set_for_wideeyed_wonder/

I am sitting in North Auditorium now watching a rehearsal as the prepare for the weekend.  It brings back a lot of memories. When Kate was 3, for the Nutcracker performance in 2005 - .  A young dancer named Sarah Farnsley was dancing as the Sugar Plum Fairy.  Her mom invited Kate to the dress rehearsal. Kate couldn't go to the performance because White Blood Cell Counts were very low from chemo... But the doctors at Riley had a huddle and decided that she could go to the dress rehearsal with a mask.  And she sat on my lap in this auditorium that I am sitting in right now and watched.. mesmerized. I still remember feeling her little bald head warm against my cheek as she watched. And she said "Mommy, I want to do that!".

The next year, she did. She was a little puppet in the creative movement class. Her hair had grown back enough to put into two little curly pig tails, and she was one of the little puppets that hide under Mother Ginger's skirt and come out and dance.  The dress rehearsal was in the evening - we had an oncology appointment at Riley earlier in the day to go over her scans.... but no problem! We had prayed about  her scans, her two previous sets of scans had been clear.. she was off treatment.. I remember thinking, "Well, let's just get this appointment done so we can enjoy The Nutcracker and Christmas."

But that is not what happened. We found out that day that the cancer was back. And all of a sudden our world collapsed.  That Nutcracker became even more important - because we thought it would be her only one. We had been told that relapses of St IV Neuroblastoma were not survivable - so we desperately wanted to give her that one performance!!   And she had the best time being a little puppet!!  The adults backstage were holding ourselves together by sheer force of will to not cry in front of her. And she was a little puppet with little brown curly pig tails and performed with her class. She loved it.

 Her doc at Riley told us a few weeks later, "I have been digging into this and the doctors at Sloan Kettering are the only ones who have had much luck with kids like her, and they have agreed to see her. Maybe they can help her. Maybe they can give you a little more time with her.".  Long story short- lots of folks prayed and Dr Kushner and Dr Modak at Sloan did help her... and she survived, she is here, and  she has danced in every Nutcracker production that Dancers Studio has produced since then. And she is 16 year old, she is dancing the part of Clara on Saturday.

I can't help but be overwhelmed as I sit here letting it soak in - It has been such a long journey and we are so blessed to have her here. Thank you, Lord.

And so -  to everyone who has been praying for her over the years -please feel free to join us Saturday afternoon if you are able! I will be the one in quietly sobbing my eyes out in the front!! 

Merry Christmas,
Trish
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