Day 22 of Childhood Cancer Awareness Month Here is Judes story: Jude started off life as a seemingly healthy baby. One day he started having lots of tummy issues, we thought were typically of a young baby. At 2 months old he had reflux so bad that he vomited enough to cause a nose bleed. We thought it odd but never really pursued it further. I noticed that while siting in his little seat, he leaned over to one side. At one point I remembered my husbands brother who had a tumour as a child, would lean to one side and I thought Could that be caused by a tumour? then quickly dismissed that thought as paranoia. Later, Jude was playing with family at 3 or 4 months old and his back arched just a bit and he screamed. This happened repeatedly and I said out loud oh poor baby. He is afraid of falling! How naive was I to constantly make excuses for the strange behavior. Jude started crying a lot. I had to wear him all around the house, he screamed for hours. I said it must be colic. One day when Jude was 5 months old, I saw it. I found a soft, mushy bump in his back that was a wide as a golf ball but only protruded out of his back slightly. I worried over it for a couple of weeks and decided I would casually mention it to his pediatrician at his next check up....2 months away. Thankfully, though, Jude developed a fever of 102.1. It only lasted a little while and he showed no other signs of sickness. I had this strange nagging feeling about it though, and made him an appointment anyways, even though his fever went away. His pediatrician looked him over and said he looked fine. As we were leaving I quickly mentioned oh, theres a bump on his back also she stopped, turned him around and quickly said she wanted it to be looked at further and made the arrangements. First stop, was a sonogram. I remember looking at the form and seeing the word mass. I hated it being there. The next day we went for a sonogram, and in my frenzy I forgot any bottles or formula. The sonographer was very kind, and made conversation with us, until at one point, I saw something and I said look Jude, theres your liver.....Her whole face changed and she asked my husband ( who was standing behind her) if he would go sit down so she could concentrate. She said she was going to give the pictures to the dr and she would be back. She took an hour. Jude was crying because he was hungry and I was mad that she was taking so long, when the original plan was for them to give me a phone call with the results. I remember at one point getting ready to walk out, when my mother in law told me to stay just a little longer. Finally, they said Judes dr is on the phone for you now and they walked be back into a room where they did their work and I picked up their office phone. His dr said that in the sonogram, they saw the mass in his back and that it was connected to a much later mass in his abdomen. We had to take him to the hospital the next morning and she said be prepared to be admitted. All I remember saying, very casually in my state of shock was we wont be admitted today right?. Family came that night and we just talked a lot. The next morning, off we went to MRI. Finally, after hours of anticipation and being told we would get a call, again with the results, I decided to ask for an update. The sweet lady behind the desk made a phone call then said to me The dr is on the way to talk to you. I thought Oh good, we will know something now. I know better now, that when we hear the words the doctors on her way to speak to you during a scan, thats either really really good news, or really bad news. Anyways, she came in and introduced herself as Dr XYZ and said she specialized in cancer called neuroblastoma. At that word cancer I fell apart. I went into the fetal position and started wailing like I never have before, or since. The dr was obviously confused and someone finally said we havent heard the word cancer yet and it dawned on her that no one had told us anything about the scan. She sat down and told me she needed me to listen to her. I did as she went over the many facts of this horrible disease and all the testing we were ahout to face. At the end of our conversation, we were ready to go to the cancer floor and be admitted. Chemo started the next day. He immidiatly went back for port insertion, biopsy, bone marrow draws, blood wok etc...he came back in pain. Little did we know it was only the beginning. All of his testing came back favorable and with a good chance of survival. He was scheduled for 8 rounds of chemotherapy, but was stopped at 4 because of his amazing response. He was on several medicines along with chemo that made him sick, with lasting effects. Chemo was rough on him but his will to thrive out shined all the illness that came. In August of 2012 we had a partial tumour resection and the took out almost all of his tumour that was left, but had to leave some in the spine so as to not damage nerves. That next February the removed his mediport and did one more scan...which showed tumour growth.....we were very discouraged. Over time his tumour has continued to slowly grow, then stops, then shrinks, then grows...its now deemed stable the past 2 or 3 scans but is almost doubled in size since before his big surgery. We arent doing treatment right now except watchful waiting where we watch it and make sure it does no harm....Judes almost 3 now....His hair is all grown back in and hes off his meds. He is scanned every 3 months with sedation...and now,even watchful waiting is full of side effects. Jude has developed sensory issues, extreme fear and anxiety, obsessive compulsive behavior, sleep myoclonis which I believe is stress induced. He sees a neurologist and will soon start seeing a behavioral health therapist to help him cope with living his daily life afraid. Afraid of scans, drs, nightmares, etc,,,,at only 3 hes traveled a long hard and painful road and he doesnt know why mommy and daddy still cant protect him from it. All we know is that God is here and has always been. Please follow his journey at Jude Lee, Seeing God HE IS WHY WE FIGHT!
Posted on: Mon, 22 Sep 2014 13:59:37 +0000
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