This morning started bright and early with a very big test that would determine a lot. Daniel’s eyes were infrared and so that the vessels in his eyes would show up in photos. These pictures are really beautiful from where he was affected by the CMV virus he no longer has any activity. All those treatments did their job and the systemic treatments have kept it away. He is disease free long enough in the eye and all clear. He will always have the scars but they do not really affect anything as far as his vision. 1 big result that leads us to the clinic at children’s next door that we have been waiting for now because of this eye result. We do need to come back again for pictures again in six weeks but not with injectable. Before leaving Daniel peed and was thrilled to report it was totally neon colored (as a result of the injected dye). Pretty awesome! BUT ONLY if you have had warning that it will happen. Without warning it is absolutely frightening. So for the record with so many different treatment in the past 18 months Daniel has peed just about every color of the rainbow, and it was him that had made note of that people (obviously, he is a teenaged boy).
Off to the clinic and we started weekly infusions and had a great visit with favorite (psychologist/fanatasy footballer) Bob. Bob makes everything better for both of us. I have been very anxious needing to address the fact that Daniel sleeps a lot after school and has very sore legs. The nurse and Doctors hear my c oncerns and understand that this is where we were just before diagnosis with symptoms and feel it is important to address every complaint. It is difficult to tease out what is regular adolescence and deconditioning and what is disease. They will do everything to help find out so we add more tests to the docket. He did some power walking sprint test with Kristen the P.T. to assess his legs and impressed everyone watching in the clinic. Again they are not used to seeing such physically healthy (big) kids running through those halls. But now what we have really been waiting for. And waiting for a very very long time. Because the eyes are clear and he has had over 8 weeks of negative blood results for CMV we are stopping daily home treatment of I.V. Foscarnate. This is HUGE. I can’t tell you how happy we both are to stop this hours long treatment and pre and post hydration regimen that controls our lives. This really is a big step toward moving on. It also means that we will now hopefully now start to see his numbers begin to climb on their own after this toxic shit is out of his system. We hope over the next month. This will hopefully lead to the need for less GCSF (neupagen) that is helping boost his numbers and consequently his energy. I will still need to draw his blood at least weekly and maybe more to monitor all his levels to see his need for this. He is also being lowered to CMVIG infusions once every 2 weeks. This is the antibodies to help support against CMV until he has enough on his own in his immune system. He is soooo close.
While spending the day at the hospital he fit in a great D[P]R show and was shown off to some visiting donors to the hospital. He proceeded to shine of course. He was going to be there anyway for the day so he scheduled the show for today instead. He is realizing how difficult it is to miss school these days and is trying to be efficient but also sees it is important to be responsible for his obligations. He takes his radio show seriously as a job commitment.
Then we were off to leg/ankle x-rays. These were more as a ruling out measure to ease our mind. Especially because none of his numbers are indicative of anything more than strength and reconditioning needs that they are thinking it is but that is why Children’s Hospital is the best at treating the whole family and not missing anything. Again after the road we have been down they will not leave one stone unturned and believe that a mother’s intuition means a lot. I am grateful for that. We got quick results that his xrays look 100% fine for what they were looking for. We are hitting it out of the ballpark today. The plan for his legs is to continue the exercise and strengthening and continue to push through the pain and get to the other side. Tough for me to watch and tougher for me to push him through but the end result is the goal and he has big goals to meet. He has basketball season, ski season, a trip to Israel requiring lots of walking and a long bright future ahead. We are heading right on into it with a much more medically lightened up schedule as of today. Woo hoo.
I leave you with this adorable piece of art from one of the walls in radiology at CHCO. It has always been one of my favorites. There is so much great and fun art on the walls around the hospital but this one always makes me smile.