Nov 26, 2005 Latest post:
Dec 13, 2018
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