Georgie’s Journey

Life lived as a potty trained little boy has been wonderful. George is so funny. He has really just taken to it like diapers never even existed. He doesn’t even wear one at night. It’s amazing. I think God threw me a bone on this one. George has even learned, and quite likes, pee peeing in the great outdoors. I think it is every boys rite of passage to be able to use the potty outside. George sure thinks it is the coolest thing on the planet. Today his labs came back with some really encouraging news. His hemoglobin came up on its own. It was at 9.8 today. Huge huge praise!!! I believe with my whole heart that this is going to be the turn around in the anemia. What awesome news! But it wouldn’t be George if some bad news didn’t come hand in hand with the good stuff. His neutrophils have dropped once again. More Neupegen shots start today and will continue every other day until his counts raise and are consistent. Who knows why this is happening. He remains a medical mystery once again....

Thursday we went in for our labs and for the IV treatment at the day hospital. It was a good day. Nothing exciting. Nothing really out of the ordinary. George did receive a special little beanie baby Goose name Loosey upon arrival which he really took a liking to. Maybe it was because it was such a random stuffed animal to receive or maybe he just genuinely likes geese. Either way, Loosey quickly became Georgie’s best buddy. I did not get any results on Thursday nor did I get any answers to any of the questions I had on a game plan. This may set some people into a nervous tailspin of “what if’s” or “why aren’t they calling me”. Not me. It actually helps me to enjoy my weekend and not think about George’s health for a short time. When I don’t hear news I always assume it’s for the best. Regardless of if that is the case or not. So we enjoyed our no news bliss until we went for labs today. Boy that was a nice break. I guess it was preparing me for the heavy news given today. First thing ...

Monday we took the day off from Nemours and I was able to head to a fancy lunch (meaning not fast food) and a movie with Bowers and Kate. George’s nanny (mom mom) and George spent the day playing and laughing. Thank goodness he makes her laugh so much or I don’t think she would agree to watch him as much as she does. Tuesday, we headed in for labs and a dr visit. His labs came back and showed that his hemoglobin had dropped. Not a ton but it did. I was actually thinking it might have gone up because his color was so pink and he had been so full of life and energy all weekend. The pinkness might have been from the overload of outdoor play Saturday and Sunday where he may or may not have been in just a diaper. Boys love to feel free I guess. My girls always liked to be fully clothed at all times. Not George. Look away for a minute and he will be shirtless or completely naked. He also decided that he wanted to start using the potty this week. He randomly said he had to go to the bathroom ...

The past two days have been filled with excitement, candy and news interviews. One of the sweet charities that have provided events and toys for not only George and our family but also tons of other kids battling cancer and other rare blood diseases. With Love Charity was started by a childhood cancer survivor who also had a bone marrow transplant when she was 14. She is amazing and thriving and spreading happiness and raising money all over the country for other children and their families. Tay (the founder) and George have become great buddies over this past year and so she asked us to come help her do an interview on a news segment she was doing for her Valentines party at the hospital. Well you know how we love live interviews (wink wink) and so of coarse we obliged. All went well until George got hungry and announced this continually to all of the viewers until I was forced to remove him from his spotlight. Hey, when you are hungry, you are hungry. I totally can relate. It was fun...

This morning George had a treat for all of the kids who are on the hematology/oncology floor. A sweet friend whose children go to Assumption catholic school had the PreK and 4th graders all hand make Valentines for George to hand out. It was such a thoughtful and fun thing for them to do and George was so excited to be the little Cupid to deliver them. I know this will brighten all of their day to know others were thinking about them. Thank you to all of the students involved in this loving project and for my friend for organizing it. The first appointment we had today was for his labs. His counts came back pretty good. Everything had come up except for his hemoglobin. But the hemoglobin has only dropped from 10.1 to 9.9 so that isn’t terrible. Hooray!!! He does not have to go back until Friday now for his blood typing for his transfusion unless he has any health changes this week. The second appointment we went to was his orthopedic specialist to talk about his swollen ankle. He said ...

Today we went in for labs and for a follow up about his swollen ankle. When I got the results back from his tests today I was a bit surprised. Over the past few days George has looked pink and healthy and full of energy. The counts did not support this at all however. His hemoglobin had dropped once again and so had his ANC. We had to give him another Neupegen shot today in hopes that it would rev up his bone marrow. He will go back in on Monday for blood typing for another blood transfusion. His platelets did come up though so that is great! Without any answers as to why this is still happening at this stage in the game we have to just trust in the Lord and be patient. I tell you one thing, the waiting part of this whole transplant is really hard. Especially when you are around him and see how happy and healthy he seems. I know that this is part of the process. I just really am praying that one day soon his blood will start to regulate. I am so looking forward to the day when his resu...

I am sorry that I never updated the blog at the end of the week last week. Things got really hectic all weekend and I just never got around to it. So much for the low key week. It was anything but. On Friday, his labs showed a slight decrease in his hemoglobin and other counts but nothing to be concerned about. Saturday I noticed that his ankle was very swollen. This is the same ankle that was hurting last weekend. The swelling never went down so he had to go get another X-ray today. The results showed no fracture, praise the Lord, but it did show fluid around the joints. I’m not really sure what this means but they told me he would  need to keep an ace bandage on it and then ice it until Thursday when they check it again. If you know George you know that he loves accessories. He was so excited to get his foot all wrapped up and even more excited when we signed it. He is milking this injury big time too. He had not complained once about any pain all last week or weekend but ever si...