The finding out. . .

I will try to remember everything but it was a tough week, so if I forget something I am sorry.  Ok here we go. . . .On October 18^th 2010 Kohlton had to have a minor ear surgery, we noticed then that he had a bump on the back upper part of his head.  I took him to the doctor, I was told it was just a hematoma and it would go away.  The end of November the bump was still there so I took him in again to the same pediatrician; we were told again it’s just a hematoma.  On December 7^th, we noticed a bump on the top, left side of his forehead.  At this time Tommy was in the process of changing jobs, so we had no insurance.  I wanted to get Kohlton seen and did NOT want to go to the same pediatrician.  We were told about a pediatrician in Milton, Dr. Ghiglino, he is amazing!  On December 12th we went to visit Dr. Ghiglino for the first time.  Dr. G looked at the bumps and gave two prescriptions one for some blood work and another for a MRI to be done when our insurance started.  As long as the bump did not change and Kohlton was not lethargic we were ok till January 1^st when insurance started.  Well, January 1^st came and we went straight to the emergency room.  The bump had moved to his eye and was making his eye swollen, it was almost shut.  The doctor at the ER said there was nothing she could do and for us to follow up with Dr. G the next day.  On Tuesday, January 3^rd when the office opened back up from the holidays, we went to see Dr. G, he measured the bumps and told me we would have to do surgery and I would be hearing from him on when to do the blood work and MRI.  About an hour after I left, we were at our friends to eat lunch and for me to soak the surgery in, Dr. G called and told me he had just talked to Dr. Brown and that she would like to admit Kohlton immediately.  My friend Laurie went with me to get everything Kason (my youngest) would need for someone to watch him and everything Kohlton would need for the hospital.  Jarrell, Laurie’s husband was trying to get a hold of Tommy and tell him over the phone about all of this while Laurie and I were getting everything and heading up to Sacred Heart Hospital.  We met my uncle-in-law at Dr. G’s office to drop Kason off with him and to get the admission papers for Kohlton.  On the way to the hospital Laurie and I peeked at the admission papers.  On those it listed suspected sarcoma, I at the time had no idea what that was.  Once we got to the hospital we went right back to his room, they had everything ready for us.  Kohlton had an IV put in almost immediately.  This is when I met Dr. Parmley, as he introduced himself as the oncologist on his case, my heart sank and I almost lost it.  Dr. Parmley examined Kohlton and ordered several scans/x-rays/and blood work to be done asap.   That night after Laurie went home, Tommy and I were numb.  The resident pediatrician on duty came by and told us there were three tumors on his skull but because she was a pediatrician she couldn’t really answer any of our questions.  We started looking up sarcomas on Google, FYI BAD IDEA!  We then made a pact not to look on Google, for anything.  That was one of the worse nights of our lives, to find out Kohlton might have a sarcoma, to three sarcomas, to I’m sorry I don’t know any of those answers, it was torture.  Tommy and I just sat up all night staring at Kohlton.  Tommy eventually got up to call our Pastor at our church to start the prayers.  The next day, Wednesday January 4^th, Kohlton had to be sedated to do a CT scan and an MRI to determine where it had spread.  We had so many friends and family show up to show their support while we sat and waited for Kohlton to be brought back to the room.  Later that night we found out it, whatever it is at this point, was not in the chest area, however Kohlton had aspirated during sedation.  So the doctors and nurses were on high alert for any signs of infection.  We were told we needed to do a biopsy and a nuclear bone scan to determine what it was and were else it might be.  We were also told that the tumors were either neuroblastoma or histiocytosis.  We stuck to our pact and did not look these up.  All I could think at this time was please God do not let it be neuroblastoma, my mom passed away from a medullablastoma and I figured any blastoma was really bad news.  On Thursday January 5^th, Kohlton was sedated to do a biopsy on the tumor towards the back of his head and at this time they decided to do a bone marrow biopsy instead of the nuclear bone scan.  We later found out that from the look of the biopsy it looked to be histiocytosis but it was not 100% confirmed, meaning the pathologist was not completely finished doing what he needed to determine it.  So we got some news that night.  It was kind of a relief knowing it was not the blastoma, but still very scary.  On Friday January 6^th, Kohlton was sedated to do a full body x-ray, a nuclear bone scan and to put his mediport in for future chemotherapy treatments.  That night we found out Kohlton had two lesions, one on each femur.  We also found out that it was for sure Langerhans Cell Histiocytosis, also known as LCH.  We never wanted either of our children to have any form of cancer but knowing that it was for sure LCH was almost relieving.  Tommy and I knowing that it was one of the more treatable types felt relieved.  We were told chemotherapy would start Monday.  On Saturday and Sunday, January 7^th and 8^th we had some other scans that did not require sedation, but little was done because of the weekend.  Kohlton started some antibiotics because of a fever. On Monday January 9^th, Kohlton had to be sedated for x-rays of his temporal bones, because of his ear surgery in October.  They needed to make sure what was in/around the temporal bone to determine the chemotherapy they would use.  Later that night we started Vinblastin, his chemo.  We also started his steroid, prednisolone, and his antacid prevacid.  Kohlton that night acted as if nothing had happened.  He had some diarrhea that night but other than that he was up and playing.  He had his favorite meal that night, pizza and chocolate milk.  On Tuesday January 10^th, Dr. Brown, Kohlton’s other oncologist came in and gave us the run down.  She gave me all the info from what medications to give, at what time to give them, how much to give, the in case of meds, what to do if questions, how to deal with any bodily fluids, changing diapers and so on.  She listened to all our concerns and answered all of our questions.  Tommy and I remember asking her if the tumor up front would shrink, she told us over time it should.  The plan with chemo was to shrink the tumors, so that they would be easy to “scoop out” that’s what it was referred to.  Dr. Brown sat and played with Kohlton for a good bit.  He loves her!  We left the hospital around 2ish that day.  Kohlton had diarrhea that day as well.  On Wednesday January 11^th, the tumor up front was about 80% gone.  By Thursday January 12^th, there was an outline around the tumor.  By Friday the 13^th, it was gone visually.  We could not see any sign of it.  Amazed!  Saturday and Sunday was fun days for us we just played.  

 Now knowing the symptoms of LCH, the pediatrician and ENT we had should have known something was not normal.  Kohlton had cradle cap at 2 years old, bruises that showed up almost instantly but was not anemic, and the two bumps on his head.  He also had the ear problems.  All these are symptoms of LCH and if these doctors would have not been burnt out they would have done the research.  We are so thankful we met Dr. Ghiglino.  He took us seriously and did something.  Dr. G did the research and contacted other doctors to figure it out.  Without him I don’t even want to think of how long it could have gone not being noticed.  He showed up every day while we were in the hospital to check up on Kohlton, Tommy, and I.  Since we have been home he has called every few days to check on us.  Like I said HE IS AMAZING!  If you are having any doubts about your pediatrician change!  Don't wait! 

Tommy and I had debated taking Kohlton to St. Jude’s Hospital in Tennessee, M.D. Anderson in Texas, or staying here.  Tommy and I thought long and hard.  We decided to stay here to do the treatments.  Dr. Parmley has practiced at St. Jude’s, John Hopkins, and at M.D. Anderson.  He is all three hospitals wrapped in one.  We feel as though he moved here just for Kohlton.  We are thankful we can do the treatments here so Tommy and I can work to keep our insurance and pay our bills.  We are also thankful we are able to stay where our support group is.  Knowing all of you love and care about us is absolutely amazing.  We are so blessed to have so many people praying for Kohlton and our family.  We pray Kohlton will be healed, that he will have little or no side effects from chemo,Tommy and I will have the strength to get through this, that Kason will be a trooper thru this as well, and that the prayers will keep coming.  Please, please keep the prayers coming!