April 12th this year marked a milestone in our family. Its been three years now since Jonathans diagnosis. On the day we entered the hospital, Jonathan was pale, lethargic, covered in bruises and so fragile. Barely a trace of any platelets, red or white blood cells could be found. They diagnosed him with a very rare disease in the cancer family that doctors only have theories about...they dont really know 100% what it even is....but what it is and what it can do is just plain horrible...Tons of doctors in and out of our room in those first couple of days. All with their own ideas of how to treat John....bone marrow transplant, some ATG medication....it was all jargon to us...shock and numbness...we just could not believe what was happening to this child who had never so much as had a cold in his entire life.... The miracle of God working through this childs life since the day he was born has been nothing short of amazing to me. But to know at that time that his condition was so bad that he could have died was more devastating as a parent, than anyone will ever know. To live in a hospital and watch every moment of your childs suffering and not be able to ease their pain....was like slowly dying inside....needles, collapsed veins morning noon and night, even in the middle of the night, the child could not sleep...could not leave his room, could not even see his own brother or spend time with his family only for short periods of time....but his smile....his beautiful smile through it all, Ill never understand it and Ill never forget it....But then...God answered prayer....we were introduced to the most amazing doctor and group of nurses and staff who worked tirelessly and did everything possible to make our lives start to get better day by day. I will never forget their names or faces. They are forever family to us and they will always be in our hearts and prayers. The amazing A.I. staff. God bless them all. They truly are heroes for what they do everyday. It was a long battle....he started treatment.....a setback when the first treatment did not work.....then transfusion after transfusion of red and white cells.....then pic lines and ports and pain that no child should ever go through....but then another miracle...Jonathan responded to the second round.....his counts, slowly rising....he was predicted to maybe rise to 50k platelets and live there for the rest of his life....Nplate needles were introduced to induce platelet growth because they werent growing....scary for a child like John...clumsy, sports oriented and a dare devil who liked the push limitations, even in sickness....whizzing around the hospital in a tricycle scaring all the doctors and nurses for fear of falling....fear of losing the little amount of platelets he had....but John never stopped..it was like he was letting us all know that this disease was not going to hold him down....and it never did....his whole life was expected to be limited to what he could do....but you know what? Not John. He never stopped pushing....we never stopped praying....The power of prayer...God can do anything! Its been three years....and what was he doing on 4/12/14 you ask? Playing soccer for his schools soccer team...the child that could not bruise....could not fall down...could not be hit in the head for fear of trauma.....was in the goalie net, blocking soccer balls flying at his head.....but thats our John....strong....stubborn...amazing....hes a miracle....God gave us a miracle child. He confounds us all....and I am just so blessed to know this little hero...hes our angel....hes our fighter....and now.....hes a survivor. oh and his counts from our last Hemoc appointment.....150,000 platelets and normal red and white blood cell counts and hope that if his counts stay stable....hell be off all medication by December....4/12/11....you didnt stop him...you didnt hold him down...he beat you...take that Aplastic Anemia! You lost!
Posted on: Sat, 19 Apr 2014 13:33:54 +0000
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