The story actually begins about three years ago when I had this inner need for a third child.  We had one of each, both healthy.   I couldn’t deny this strong feeling for one more child.  A year and half later we found out that we were expecting.  Through the pregnancy things were normal, until at 37 weeks my amniotic fluid had increased to measure 41 weeks.  Being so uncomfortable and already starting to dilate and contract my doctor decided to induce labor.  On February 27, 2008 our little angel was born weighing 7lb 4oz.  He didn’t cry very much and seemed different than our other two, but then again all children are different.  We brought him home and a day and half later he was in the E.R. with severe dehydration, lack of wet diapers and lethargy.  He was admitted overnight, treated under the bilirubin lights and sent home.  A couple of weeks later I noticed his mouth and surrounding area was purple, and brought him to his doctor.  His oxygen level was normal and everything physically seemed fine.  All along little signs were there, but nothing was ever made of it.  At his one month visit, I had commented that Joey did not cry very much.  I was told he may be a bit laid back and to wait and see how he was at his two month visit.  By two months, Joey could not make eye contact, hold his head up, slept about 22 hours a day, and did not smile.  His cry was comparable to a kitten’s purr.  At this point I think we were in denial and didn’t want to believe that something was wrong.  Up until now, all my panicking and questioning seemed to check out okay.  With all this the doctor seemed extremely concerned and had us visit a developmental therapist.  The therapist agreed something was terribly wrong.  In fact, she thought he was possibly blind and having seizures.  With that we were told by our pediatrician to bring him to the E.R.  Joey had a lot of stiffness in his upper extremities, very lethargic, and his head stiffened to the right.  Also, his eyes would roll up into his head.  All of a sudden a whirl wind hit.  We were admitted into the hospital for blood tests, a MRI of his brain, CT scans, and then he was hooked up to an EEG machine, to monitor seizure activities.  Our poor little angel only 8 weeks old, how could he be going through all of this?  The fear was indescribable. 

The next morning we met Joey’s neurologist.  He studied him like a fine piece of art.  He then had him hooked to a 48 hour monitor along with the EEG that he would watch from his home.  After the EEG was over, his neurologist sat down with us and started to explain an extremely rare disease called Opsoclonus Myoclonus Syndrome (OMS).  This rare disease affects 1 in 10 million children with a typical age onset of 18 months.  Before leaving the room, the doctor made a bold move to start Joey on a very strong steroid called ACTH.  The situation was surreal, there was no way this is what Joey has.  There is no definitive test to confirm the disease-the diagnosis and treatment is purely clinical.  During the next 7 weeks Joey was given test after test looking to rule out other possible diseases.  Included in those test were numerous MRI and CT Scans looking for a tumor (Neuroblastoma).  If found, this tumor would prove the diagnosis correct, but no tumor was found.  Joey’s neurologist then suggested that we go to a Dr. that specializes in OMS.  The Dr. said that Joey was too young to diagnose, the disease is so rare, and Joey did not present the typical symptoms.

                                    Nick, Joey & Samantha

Still, Joey’s neurologist trusted his gut and kept looking for a tumor.  Because of all the testing, multiple blood draws, and medicine administrations, Joey needed to surgically have an access port placed under his chest.  Finally, after 7 terrifying weeks of constant searching, the tumor was located in his right Adrenal Gland.  His neurologist was right from the very beginning.  Immediately the tumor was removed.  The surgeon was confident that he had removed the entire tumor including the Adrenal Gland.  Joey was then admitted into the Pediatric ICU, and was doing great.  He was released after a week.  We left the hospital confident our son was a cancer survivor and that the OMS would be our biggest concern and focus.  A couple of days later his oncologist called and said that the biopsy of the tumor was N-Myc amplified.  This type of tumor is highly unfavorable, and wanted to do a MIBG scan and bone marrow aspiration just to make sure all grounds were covered.  He assured us that he did not expect to find anything.  A week later we received a call that we never thought we would receive.  We needed to readmit Joey into the hospital to start his heavy chemotherapy treatment, the cancer was found in his bone marrow and he was diagnosed with Stage 4 N-Myc Amplified Neuroblastoma.  Words cannot even describe what we felt.  A knife had just stabbed us in the heart.  Our baby was dying.  How much more could one family take.  We brought Joey into the hospital and immediately we were put in a room with the Oncologist, three nurses, and a counselor.  The Dr proceeded to explain his treatments, the need for a stem cell transplant, and his probable prognosis (which was not good).  We went numb.  Lifeless would describe it better.  We were told that more children die from the chemo than the cancer because of infections.  By day two of Joey’s chemo treatment, as I ran my fingers through his hair, it had already begun to fall out.  The poison going into his body was that strong.  We also would have to worry about heart failure or him becoming deaf- if he were to survive.

During the next five days of treatments, we had Joey baptized in the hospital.  We didn’t know from day to day what was to come.  Joey tolerated the Chemo pretty well, only becoming sick a few times.  Once we were home, his home nurse would visit a few times a week, we also had to take Joey back into the clinic for CBC tests every couple of days.  Every four weeks Joey’s plan was to go back in for five days of chemo for the next six months, and then he would receive his stem cell transplant.  These next four weeks were living hell.  All I could do was hold Joey, cry, and continuously pray.  All the love and support we were receiving was amazing.  Joey had prayer chains on the Internet and special church services done in his honor.  So many people were praying for him.  Again, it was all so surreal.  The worst part of it all was sitting down with our four and five year old children explaining that Jesus may have to take Joey from us.  It tore our hearts out.  After four weeks of living this nightmare, we pulled ourselves together to go back in for round two of his chemo.  Joey was admitted and we were settling in our room when the nurse came in and told us the Oncologist would be in to see us in a few hours.  He needed to talk to us.  What more could we possibly hear.  Finally the doctor came in to see us and told us we were going to hold off doing the chemo.  He said we needed to go to Children’s Memorial (where Joey was to have the stem cell transplant) and speak to the head doctor of the stem cell unit.  Being very confused and angry that our son’s treatment was being put on hold, we needed more information.  The doctor told us there had been some discrepancies in the reading of the bone marrow and we would need to speak to the Dr. at Children’s.  No other information could be given at this time until everything was confirmed.  It took another week to get in there.  As we drove downtown we couldn’t imagine what more we could hear.  We were brought into a room with the doctor and her nurse.  The nurse handed us a box of tissue and the conversation began; upon reviewing the original bone marrow in preparation for the transplant, the bone marrow showed no sign of Neuroblastoma.  I didn’t know if we were to scream with joy or what.  One test was positive the other negative.  We needed a third opinion.  The third doctor, who is a Neuroblastoma specialist, confirmed Joey’s bone marrow was clean.  Praise the Lord!  Whatever the case may be, our son was a miracle, the cancer was not in his bone marrow.  We were told that 70% of these very rare N-Myc tumors, 12 in the US on record and 87 worldwide, did come back within the first year.  Our baby just celebrated his one year Cancer free anniversary in June.  It has not come back.  What a roller coaster of emotions to deal with. 

Things have definitely improved for Joey, though our poor baby was readmitted in Nov., Feb., and April each time with a staph infection in his port.  Because of the infections, Joey had to have his port surgically removed and a new port was placed in his opposite chest area.  A total of four surgeries so far he has endured (with the ports and resection of the adrenal gland and tumor).  Since he has been clean for one year with CT Scans every two months, we are now able to spread them out to every four months.  Joey still receives monthly IVIG treatments and will for a few more years.  He also did have to get six months of additional low dose chemotherapy (Cytocin) for his autoimmune disorder, hoping that it may help his future neurological outcome.  Every other day he receives shots of ACTH in his thighs and has to take Prednisone (another steroid).  Because of the effects of all the steroids, he sees an Endocrinologist and an Opthomologist every three months and will continue to see his Oncologist and Neurologist  monthly.  He also has to take daily medications for precautionary reasons from the steroids, an antibiotic to prevent infections, Zantac for Ulcers, and Calcium and Vitamin D for his bones.  He also is unable to receive any kind of vaccines due to the autoimmune response and weakened immune system.  Joey receives intense therapy including Occupational therapy, Physical therapy, Developmental therapy and Speech therapy.  He has graduated from Vision therapy.  He is making amazing progress and doing things we never thought possible.  And the best part is he is alive for us to love and enjoy.  We do not know what his neurological outcome will be, we know we still have a very long road ahead, but with a lot of hope and faith, we do know he will continue to improve.  We also continuously pray that his cancer will not return.