When my mommy was just 8 weeks pregnant she found I was going to have a lot of medical problems. On February 21 , 2008 I came into the world 4 lbs 8 ozs mommy says I was the most beautiful little boy she had ever seen. I had a very wide smile due to my cleft lip and pallet but I also had a congenital heart defect called of tetralogy of fallot with pulmonary atresia. The doctors said I wouldn't liv
e for mommy and daddy just to enjoy the days ahead. So we got to go home from the NICU . I had a feeding tube to help me eat. Quickly mommy and daddy got busy trying to find someone to help me. They called news cameras papers and sent out numbers of chain letters. They also got all of their friends to pray for me. Well when I was six months old. Mommy knew I was a miracle for sure. She also got a call wondering if we could come to California. Dr Frank Hanley and lpch ( Frank L. Hanley, MD - Lucile Packard Children's Hospital) said he could help! We got there and I was given a 20 percent chance to make it threw my open heart surgery On October 28, 2008 I had My first open heart surgery that lasted 18 hours. I stayed in the hospital for a few months. When we returned home we had our first appointment with the genetic doctor. He gave mommy and daddy more bad news. He said I had over 21 deletions in the 16th chromosome and that I shouldn't be able to live with this. He has never seen anyone live with it. He opened a big book where it said this was the number one cause of miscarriages. As my heart condition is also. My mommy said what does this mean? He said at worse by age five I will be in heaven at best I will totally regress and forget everything. Well also with my heart surgery ( heart surgery was Oct 28 2008) I got Vocal cord paresis . They said I would never speak or eat by mouth again. When I would Cry there was no Sound. I wasn't able to eat by mouth due to the food failing in my lungs. So I have a feeding tube. Aka My Mickey Button. At 3 years old Timothy showed us Once again that Doctors aren't always in Control. It was 11 o'clock at night, My mama was on the phone with my great Nana. My great Nana asked her who was screaming. My mama said Timothy. Nana said Timothy?? She said Oh Jesus thank you, Told great Nana she had to call everyone. Its the Middle of the night and Mama woke everyone up by the sound of the phone.Mama scared me all the way to the hospital cause she was screaming Thank you Thank you. My daddy left from work to come hear me for the first time in a very long time. They both started screaming. Mama tells me about that night in the ER, The weird stares they got in the ER cause they were Praising our good lord! Crying, laughing, Yelling, Jumping up and down!! They all quickly learned what was going on as this was going on . Of course it wasn't long after that they called my name to go back and see the doctor. That Doctor tried to knock there Praise down, They said not to get used to it cause this was a freak thing. It wont last, They asked the doctor why? He said this shouldn't be. This is impossible. The vocal cords cant repair there self's. Mama &Daddy told them doctors they would see the Miracle in this in due Time. I then got to start eating by mouth!!! Mama always let me Play with the bottle for pleasure with tons of thick it Threw out the 3 years. Cause mama knew this Blessing was coming. My lip was still open and the roof of my mouth was gone due to the Cleft lip and pallet. Well let me tell you! I'm now 5 years old and I still have it. I also am learning to eat by mouth, I love my sippy cup with pedasure. I also love to ride sheep at the rodeo, I play baseball , I Love the Xbox , I have had 54 surgery's now from my head to my feet. Timothy Has shown us threw this past 5 years, How powerful Our Lord is. He is working Miracles in Timothy, Also threw Timothy. Our Journey is no where near over. Here is where we are at now. To let everyone know what is going on with Timothy, Timothy has now had 54 surgery's as of Wednesday night. Timothy was born with a Cleft lip and Pallet, Tetralogy of Fallot with Pulmonary Atresia of the heart (tofpa) Also a rare Genetic disorder Trisomy 16 which is said to not be compatible with life. Timothy has over come so much.. On Friday July 26,2013 Timothy received his shots to start school. On Sunday I noticed Timothy was running a low grade fever. He also mentioned his forehead hurt. I passed it off thinking it was just from the shots. Threw out the week he would say Mommy my forehead hurts no tears just my forehead hurt and then would go back to what he was doing.On Saturday August 3rd Timothy was playing the xbox is when i noticed his head was swollen. The following Tuesday August 6,2013 I took him to see the pediatric doctor he thought as we all did maybe this was from his sinus's we had canceled the surgery that was supposed to be on Friday August 9th I just had a bad feeling something wasn't right. The ped doctor said if he wasn't no better by Thursday August 8th to call. Well again he seemed to appear ok just every now and then saying my forehead hurts. Friday Morning I went to give Timothy a bath which is when I noticed he was really hiding the pain good. I went to wash his face and he lead out a scream. I called the peds Doctor and they decided yes a ct-scan was needed. Monday afternoon August 12,2013 we went to have the CT, Monday night we got a call that dropped me to my knees. They said we need to have a MRI first thing in the morning then come to the peds office at that point we will tell you which hospital you will be going to. They thought this was an rare infection called Potts puffy tumor. So Tuesday morning we went down to have the MRI. it didn't happen due to them not being able to sedate him.We then went to the peds doctor who told us we need to head to Winston. We got to Winston to see the ENT doctor, He again told us this is Potts puffy tumor and timothy needs to be in the hospital asap. He sent me threw the ER to be admitted. The doctors all talked and came and told us they were going to take Timothy into surgery 53 in the morning to change his nose Stints and MRI. He did great with it. Timothy was back to him self in no time. We were playing the xbox games thinking this was just an infection that would be able to be treated with several weeks of antibiotics, We had asked the doctors to not speak in front of Timothy on what was on going. So around 4 the doctors came in and asked for John and I to come out in the hall. We never thought as parents after everything we have been threw with Timothy that we would hear the words that came out of the doctors mouths. Mom and Dad we are truly sorry to tell you this is not an infection Timothy has a Tumor in his head, The Cancer team in on there way now. We cant wait he has to go back in surgery tonight to get biopsy the tumor. We never could of been prepared to hear these words. No answers to what kind, can you fix my baby? Will he live threw this? What kind of treatment? NO answers at all. They came us some time to regroup as a family to try to pull ourselves together for Timothy. We headed down the longest hall way ever to surgery 54 around 7 o'clock to the holding area for surgery where Dr Daniel J. Kirse The (pediatric ENT/otolaryngology) Dr Thomas Mclean (Pediatric Hematology and Oncology) Daniel E. Couture, M.D. (Assistant Professor, Neurosurgery) met me, They advise me of what was fixing to take place with the biopsies they also thought once they set eyes on the tumor they would be able to tell me more on what type's of tumor this may be. When they were fixing to leave with Timothy Dr Krise came to me and told me his residence was looking at the MRI and asked about Timothy's neck, Dr Krise came over and said have you noticed the knot in Timothy's neck. I had not he felt it as well as I did, He said Crystal I need to Biopsy it as well. We sang you are my Sunshine I over heard all my family and the doctors as well singing as They put Timothy to sleep in my arms. He then went off to surgery number 54, We all sat on pins and needles waiting to hear that surgery was over, Surgery took about 2 hours Dr Krise came out and talked to us and told us he was able to get the mass out of his throat, However he still sent it off to be checked. His head on the other hand he took some of the bone out of his head to send for pathology report as well.. We got back to Timothy's room about 11 o'clock Wednesday night, When i was rubbing Timothy chest I remembered the knot I had felt in his chest a few months back . I had told Cardiology about this back at the end of November they told me it was probably scar tissue from his open heart surgery. I questioned this because it has been 4 years since his surgery. I also mentioned to the peds doctor in March about this mass which is the time we changed heart doctors. He also agreed this was probably scar tissue and that we would keep an eye on it. I Remembered this at 2 o'clock in the morning I asked the nurse to page the doctor. When the doctor came down she felt his chest and start this isn't scar tissue. However we don't know what it is. They want to wait on the other test to come back to try to do all the stuff together. They let us come home Thursday night they felt Timothy didn't need to be in the hospital just waiting for the answers to come. So they let us come home to enjoy the weekend with being prepared to be back for a while next week.. The phone call arrived that we all were waiting on. However It didn't come with news any of us wanted to hear or are ready to face. 6:30 am August 22,2013
August 23, 2013 3:30 Mommy tell ours Tinman Family The news. Timothy has Langerhans' cell histiocytosis It’s a very rare Disease ( LCH is not strictly a cancer, but it's a cancer-like condition that may be treated with chemotherapy.
