Hi everyone, Tim here. Yes my very first update. Hope I can write as well as Melissa so here goes. Poor Melissa is under the weather right now hence me updating. She has been battling a cold for the last few days but thankfully is feeling a little better today. So where to begin????
Let’s start on the medical side of things. Dylan has completed his first week of the Perifosine trial and so far he has tolerated it pretty well. Today we went to clinic to do a full blood work up to check all his levels. Dylan’s potassium is still on the lower side of normal range (3.7) so we will continue the oral potassium supplement. His liver counts are almost back to normal which is great news. All other blood counts are still looking good. So far the only side effects to the trial have been slight nausea and an increase of diarrhea both of which can be helped with medication. Dr Becher and the team are happy with the way the trial is going but keep in mind it is still very early days.
As for the social side, it has been an interesting few days. On Sunday, Cain, Dylan and I went to Kyle Pena’s 8th birthday party uptown. Kyle’s older brothers Charlie and Michael both suffer from Sickle Cell Anemia for which Kyle was a perfect match for transplant. Their family were guests here at the RMDH for a number of years. We had a great time and met up with Eli and his dad Aaron. After the party we all left together. The five of us caught the subway to 86th street then caught the cross town bus to 86 and 2nd. While we were waiting for the bus on 2nd, a large stretch limo pulled around the corner. The boys started waving to the driver as he waved back and drove past slowly. With this, Dylan started waving his arms around and shouting “aren’t you going to pick us up?” WELL, the funniest thing happened. The limo stopped and started to back up. The bus pulled up behind the limo and as we were about to jump on the bus, the limo driver jumped out and asked me where we were going. At first I didn’t know what to say, then the driver pointed at Dylan and said “where is the little kid in the blue shirt going?” I said that we were headed to 73rd. With that he opened the door and said “jump in and let me drive you there as I have some time to kill before I have to pick up my friends”. This thing was huge!!! The boys had a ball and Aaron and I just looked at each other and laughed. It was fully equipped with all the bells and whistles. Loud music and lots and lots of flashing lights. When we reached 73rd, the driver pulled over to let us out. We wanted to give the driver a tip but he would not accept it so we wrapped it up with one of Dylan’s business cards and one of Eli’s wristbands. Melissa and I laughed about how these things always seem to happen to Dylan out of the blue like that. Aaron and I laughed about what its like hanging with the A crowd LOL. On Monday, I joined another two families, Rob and Zach and Ashley and her mom from Boston and staff members from the house while we attended a luncheon to honor the efforts of all the dogs and volunteers associated with Angels On a Leash program. This program was organized so that patients and their families get to enjoy the health benefits of a dog that has nothing but unconditional love for those around long enough to stop and pat them. Today after clinic, Dylan and I with again, the same families and some of the staff from the house went to Nasdaq in Times Square for the closing bell. Dylan had no idea what it was all about. All he was interested in was playing with all the different therapy dogs that attended as well. I would like to take this opportunity to thank all the volunteers and their furry kids on behalf of all the families here at the RMDH for the happiness they bring not only our sick kids, but for the joy and happiness they bring to the whole family. You guys are AWESOME!!!
Watch the Nasdaq Video HERE
You can see Dylan holding Teigh (Britney Spaniel) and me in the background!
Please pray for all our kids and their families as we travel this road to better days ahead.
Cheers Tim.
