Welcome to our Child Web Page. It has been provided to keep people updated about our Child. It is also being created to give you--"our special visitors"--a place to leave us words of inspiration.
Our son Nathaniel is a shining beam of light in our lives. He is a warrior in a battle with leukemia. To him, it is cancer that keeps coming back and reluctantly but courageously he battles on. He would like to be a normal healthy boy like his twin brother, Matthew, but this is not the race that has been set before him.
To our visitors who may not understand leukemia, bad white cells keep producing within his body and keep trying to take over his good cells. His diagnosis on 3/15/97 was high risk ALL (Acute Lymphoblastic Leukemia), CNS (Central Nervous System) negative. On Sept. 7, 2000, he relapsed with ALL (CNS positive). On April 29, 2003, one day before his birthday, we received the sad news that he has relapsed again in CNS.
He fought the cancer once with three years of chemotherapy, then it came back three months later and he fought that battle with more chemotherapy and radiation and a Bone Marrow Transplant from his identical twin brother. Twenty-eight months later he had to be told that more cancer had been found in his body and that he would need to endure more treatments.
His new treatment phase was very intensive. We spent every third weekend in the hospital for three days and the in between weeks, we went for weekly day visits. It was very involved. At the end of the first year of that, his doctor began setting up arrangements for us to see about having another Bone Marrow Transplant. We never got to that.
In July 2004, his liver shut down. He was in hospital from July 5, 2004 until August 28, 2004 and was a very sick child. We were receiving very little hope, but we keep hoping. He could not receive a liver transplant due to his already life threathing leukemia. We were told if any part of the liver was still alive it could regenerate. Plasma was removed from his body twice daily and replaced with new plasma. After a week they weren't seeing the results they hoped to and they began to prepare us for the worst. We refused a liver biopsy in fear they would return a no hope situation. We asked for another week of treatment on the plasma and they agreed but then we all agree to give that a few more days and hold it and see what would happen. The results started to improve and plasma exchanges were only done once a day for a few more days. Nathaniel's liver began to recover and it continued to recover. We have so many people who prayed for him and we are so thankful for everyone's prayers and support. We believe God heard those prayers! By His grace and mercy Nathaniel recovered from the liver failure.
Nathaniel has spent the last three years recovering from the liver failure and he still continues to improve. The liver was not doing it's job and ammonia swelled up into the brain and basically washed out all his connections. He has had to relearn everything and is still in that process. He came home in diapers and on a feeding tube and couldn't talk. He has made so much progress and that is so encouraging. We continue to thank you for caring and for your prayers for his complete recovery.
Nathaniel is 13 years old.
He is not alone. Many children fight this awful battle with cancer and life threating situations. Some win, some lose. With each relapse a child has - chances for remission fade. It is a heartbreaking story and little heroes all over the world are at the front lines on this battlefield.
Parents and grandparents hope for a cure for their precious children and grandchildren and yet it has not been achieved to a 100% cure rate. Success rates have improved greatly over years but that is not good enough when children are still dying from this disease. Please join us with HOPE for a cure.
If you are a praying person and would like to pray for Nathaniel or add him to a prayer group or chain, we would appreciate that so very much. You'll find our guestbook below, if you have time to leave a message of hope or inspiration, please do. You can leave messages for Nathaniel also. He would love to know you are thinking about him.
With sincere thanks for visiting our child's page, Nathaniel's Mom, Vicki
Journal
Friday, March 21, 2008 11:55 PM CDT
Everyone, I am sorry to be so long in getting an update posted.
Sometimes it seems like there is not much to add that would be of interest and I put off updating. Then I come on here and see that some people have stopped in to check on us and I feel guilty that I haven't at least posted something new.
And being honest, sometimes I want to run as far away as I can from even thinking about all the heartaches that go with childhood cancer. It rips my heart out for the children, the parents who suffer when a child does die.
Nathaniel is continuing to do okay. He is still greatly improving all the time. His academic skills are still very far behind and he still can't read a word. His communication skills have greatly improved but sometimes there are gaps in what he can understand by the spoken word. However, his ability to preceive actions and sense situations is amazing. He can tell you his name and how old he is. He knows his school name but usually not what grade he is in. Still doesn't say his phone number. He is getting much better at tracing letters and numbers but it is still done with stroke motion rather than fluent movement. He is making some progress with circular motions.
He is growing a bit taller but is still a good foot shorter than his identical twin brother. They get along a bit better these days but still have those brother sibling moments which is really okay and normal.
We did have a bit of a scare in Feb. Nathaniel had a seizure one morning just before school. It really scared me to death and I called 911. They took him to ER and then between several phone calls with doctors, it was decided we should take him up to the hospital in Chicago so his oncologist could do a spinal tap and other tests.
They did an MRI and an EEG. We received pretty good results from all the tests and the best part being that it was not a return of the leukemia.
Immediately, he was started on Dilantin and we have already had a bad experience with that. The level was to be checked one month from the start date, however, two weeks into taking it he began to have episodes of behavior that concerned his school. I called his nurse and they recommended a Dilantin level check be done. Upon getting the results for that he was twice the high range of dosage. I held the med for a week and a half and he is just getting started back on it now but at a lower dose. We are now going to have it checked weekly until we make sure he is getting the right dose for his system.
That's about it. I am happy for those that still come by and check on him and maybe sometimes I don't realize those that do because not everyone signs the guestbook.
Thank you and we still appreciate those that pray for him and remember him.
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