Today we had to take my son to the Hematologist for an infusion of medication called DDAVP used for bleeding disorders.
My son has a platelet function disorder. It is a "non-descript" platelet function disorder and appears to be rather random. I say random because my child will bruise like crazy on his legs and lower back, yet they will draw blood from his arm and you would barely know where the site was that the blood was drawn. In February he had a hematoma in his duodenum (upper small intestine) where a biopsy was taken, yet he didn't have one in his stomach or esophagus where they took other biopsies. He was circumcised as a baby and had no issues with bleeding. Just a seriously weird bleeding disorder.
This infusion of medication was administered today as a means to see if the medication can be used to help "normalize" his platelet function. After 30 minutes of the infusion, we had to wait 1 hour and then the nurse withdrew several vials of blood to test the platelet function and a few other things. If this medication works, we lucked out. It means that this medicine can be used in the event my son needs any dental or medical procedure. It will help normalize the platelet functions so we won't have to worry about him bleeding out or incurring an unwanted hematoma.
This bleeding disorder is somewhat "stressful" and "unnerving". My son will need to continue to minimize his activities when he gets older. He'll most likely never be able to play any contact sports. Sort of makes me sad, because nothing is cuter than a little "pee wee" football player. I'm saddened that my son will never be able to wear the shoulder pads, helmet and jersey of a football player. We have to keep an eye on him for any injuries from falling or cuts, etc. Its hard to manage a 3 year old on playground equipment when all the other kids can play on it. So I truly feel bad for my son and the road he'll be traveling on with this side effect of having Noonans Syndrome. I sort of feel sorry for myself some times because I spend a lot of time worrying and stressing over him. Its like I spend my life with one eye constantly peeled and focused on him!
Today though, we spent almost 3 hours in the Pediatric Hematology/Oncology department of the Cleveland Clinic and I can tell you worry, fears and struggles "are relative". When God handed out the deck of cards (children), he handed me a much better and playable hand than what I witnessed in the Hematology/Oncology office today. Yes, I have valid fears, worries and struggles, but there are so many other parents and children "trumping" us with their "challenges" by leaps and bounds.
I met a Dad today at the doctor's office. He looked at my son and knew immediately that he was 3 years old. His son was 7 years old and had been diagnosed with stage 4 cancer when he was 3 years old. He had several tumors the size of cantaloupes in his toddler body. He had 1 year of chemotherapy following surgery. He was "cancer free" for a year and then it re-emerged in a different area of the body. He had surgery again and "heavy duty" chemotherapy for another year and has now been cancer free for a year. My fingers are crossed that it remains that way for a very very long time. What a brave little boy! I think my son being at this particular doctor's office brought back some not so good memories of when his child was so very very ill. He walked up to me and said to me, this is a good place to be. The doctors and nurses are excellent! I think he felt he needed to share that because he thought my son was a "cancer" patient too. I explained briefly that my son was here for an infusion to determine if he will have medication to help his bleeding disorder. I almost felt guilty that our "diagnosis" was "easy" relatively speaking.
The Dad had worry, fear and anxiety written all over his face even though his son was currently in "remission". I could tell the Dad was scared because he opened up so willingly to share his son's medical story. I got that he was trying to help me feel better by sharing his son's story. I told him that his son looked fabulous (which he did) and I was hoping that his prognosis was good! The Dad said to me, they won't even give us a prognosis because he had cancer "that bad". My heart just hurt for him. I wanted to give him a hug. I know my husband would have thought I was nuts, but I really wanted to give this man a hug. I did say to him though, his son would be in my thoughts and prayers and I hope that he continues to do well!
Today I learned that struggles, worries, fears are all relative - situationally speaking!
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