These pictures are snapshots of our life during the clinical trial. You will notice that he smiles in every one of them. Despite the fact that in some he had high fevers and terrible body aches, nausea, chills, rigors, etc. His attitude is inspiring and humbling.
The PIC line is in and infusion is ready to start.
The very first infusion
Vitals and blood sugar checks by Super G
T's biggest supporters
One of the tougher times.
Time to go HOME!
We have had an interesting experience as we have journeyed through this clinical trial. Two steps forward and one step back. Twists and turns, ups and downs, hope and tears.
I have watched our family mature and grow in a way I couldn't have imagined before. I am so grateful our marriage has had a rock solid foundation, I have needed a soft place to fall. Our other son has taken a new role in our family, he has matured and grown deeper into his potential in a remarkable way. His relationship with his brother took on a new meaning, he has become more protective and responsible for his older brother and his younger sister. He has a new awareness in his eyes and soul that has changed the way he carries himself and expanded his confidence. Little Miss L has adapted with the ease only a spirit like her's possesses. She has taken her world changes with a grace and maturity that belies her age.
And then there is T.
We left the hospital on May 15th. The first few days home were spent resting up and re- cooperating from the medicines and the sleep deprivation. T didn't feel bad that first week, but he certainly didn't feel great. He didn't make it to school that week. Serum sickness hit five days after we got home. A rash, most of the blood vessels in his eyes ruptured, a mild fever, nausea, and some body aches. We started the steroids and ibuprofen and T felt better by the next day. He improved so much over that weekend that we decided to wean him off the steroids. Monday he went to school and had a great day. We were feeling pretty "bad" thinking we kicked serum sickness butt. Serum sickness proved us wrong and returned with a vengeance not seen before about 36 hours after the last steroid dose. Horrible body aches, rash, rigors and relentless nerve pain. Steroids, pain medicine, hot packs, cold packs, blankets, hand holding, and love helped him cope until relief came. We gained a new respect after being schooled by serum sickness and weaned off the steroids much slower this time. T made it to school a total of three days before summer break. One day was spent participating in a school wide water fight and play day. I am glad he didn't miss it.
I am at a loss of words to portray how proud of T we are. We have admired his thought process as he researched and made his decision, admired the courage and strength it took to endure the trial process. The grace that he showed when feeling the worst he has felt in his entire life. The hope and positive attitude he has maintained on the difficult extended recovery he endured after the trial. He has never regretted his decision, and has expressed nothing but gratitude for receiving the study drug.
Time will tell both the researchers and our brave boy if what he endured had the desired result. Over the next months and years if T's blood sugars remain stable and easy to manage it will be a blessing indeed. If not, the education we are receiving about diabetes management and the contributions to research are invaluable.
We are so new to diabetes that we must hold onto hope. Hope that someday there is an end to pokes, carb counting, shots, doctor appointments and insurance battles. Hope that there is an end to the stress, burden, worry and fear living with this brings. Hope that there are researchers more passionate about a cure than drug companies are about a profit. Hope that there is a cure. Hope that T contributed to it.