Day 500: 6 Months Of Maintenance Done!

Wow what a month it has been! We are enjoying this summer more than we could have thought. This is what life is (mostly) supposed to be like. We have been trying to be active with Cristian to make up for the time lost last year, two if you include Covid. We’ve been having play dates with friends, visiting playgrounds, and even threw a pool party with a bunch of his cousins. We even had family visit from out of state including Nana and Aunt Cynthia who we haven’t seen in years. Cristian even got his hair cut! It was getting so long that he needed one. First fair it since 2020, looking good little man!

This past month also included Father’s Day which was extra special this year. In addition to spending the day together as a family, we made a truly unique memory thanks to a local group called Hope Kids. This group helps families that are going through situations like ours. For Father’s Day this year they organized a photo shoot a couple weeks earlier for the child and father to take pictures. They even let Cristian take a photo. Admittedly the photo was supposed to be of dad but he was more interested in his cars. Haha typical Cristian! Fast forward to Father’s Day weekend and we got to see the photos. They came out amazing and turned out to be a very special moment for Cristian and myself. The photos were so good (not just being biased) that they used one of the photos to advertise the event.

This past month did include the start of another 3 month cycle, which meant a spinal tap and one week of steroids. The spinal taps have historically slowed Cristian down for a day or so, but it’s the steroids that really drain his energy. It was unfortunate timing with Mimi, Gpa, and Aidan visiting. But the family visiting actually helped give him some extra energy due to excitement. Once the steroids finished he was back at 100% within a few days.

On a much better note we recently received a bit of a miracle from the Make A Wish foundation. Earlier this year we were nominated to receive a wish from someone at the hospital and talked with them about going to Disney World. At the time they had a policy that required everyone in the family, including Cristian, to be fully vaccinated for Covid. Because of Cristian’s treatments he is unable to receive any vaccines. This was a huge bummer because we believe Cristian (and Leena) would love that experience. After hearing this we prayed for a change of the policy. Well the Lord came through and last week we heard that the vaccine requirements have been dropped and we are able to move forward with the wish! We haven’t received any specifics yet but we hope to be going before Cristian starts school next month.

While we have made it this far on the rollercoaster that has been his treatments we still have a ways to go. We expect the remainder of the time to be like the last 6 months, thank you Lord. Based on his current treatment plan that means another 18-24 months (12-18 when we move him to MD Anderson). We pray that the timeline gets shortened so we can put this behind us!

We continue to be extremely thankful to the lord for everything he is doing for our family. We went through a dark period but he helped guide us through it and continues to watch over us. Through him everything IS possible!