Jackson's Update

Hello Everyone,

The last couple of weeks have been somewhat eventful. Jackson's appointments in SF went well. No MRI on the 24th. It was rescheduled for April 5th because they added the spine to the scan. Another trip, but peace of mind that his body is clear of disease. His oncologist said scanning the spine every three months is on the aggressive side, but she said she would be fine with that if that is what we wanted to do.

So Jackson had his MRI on Tuesday, and of course they were running behind. Jackson has unfortunately gotten used to the waits. His clinic appointment was immediately following the MRI, so we went upstairs just after, and waited for his doctor. She came in with good news and bad news. Good news, or should I say Great news, is that there is no tumor! So yay, clean scan in that regard. Bad news is that they found a blood clot in the left transverse sinus between the brain and the skull. He has had no symptoms, just happened to find it on the scan. They admitted him to PICU that night because they were planning worst treatment scenario which is start on heparin drip for a few days and then go home with Lovinox injections daily. They decided to back track because he was asymptomatic. They just started him on IV fluids and gave Lovinox injection Tuesday night. They checked his levels a few hours later, and when the results came in on Wednesday they let him go home. So I get to give him more shots at home :(. This time it is 2 times a day for 3-6 months. They will check his next scan in July to make sure the clot is dissolving, or gone completely. So, we went up Tuesday with no supplies, clothing, etc., and thank goodness we only had to stay one night opposed to three or more. Jackson does so well with all of the "bumps" that come along. He has already had 4 doses of the Lovinox and he handles it so well. When I explained to him what was going on, why he was in the hospital, and what we needed to do to fix it he just said "OK". He didn't even stress over the IV. He amazes me all of the time!

Jackson's endocrinology appointment and his neurology appointments went well on March 23 and 24th. Endocrinology is already talking about starting growth hormone anytime after May. We have another appointment in July when Warren will go with me and we can discuss it further with the doctor. As of the 24th, Dr. Gelfand, his neurologist didn't need to see him until a year out, but now, after finding the clot, she needs to see him in July also. So July will be a busy month again. He does have to see his oncologist monthly while he is on the Lovinox to monitor his blood levels and to follow up. They don't know the cause of the clot, they just think that it is a fluke thing, most likely not related to the cancer treatments. They are checking for clotting disorders though. We won't get those results for days to weeks. So please keep saying prayers for our little hero.