Georgie’s Journey

George was selected as one of the Wolfson 55 patients of the year for 2020. These are 55 patients that drs nominate to be highlighted for their fundraising efforts for the children’s hospital. Each year they put on a Children’s challenge run. This year the event will be held on January 25th at the baseball grounds downtown. There is a 55k ultra marathon, a 55k relay race, a 30k run and a 1 mile fun run. We will be Georgie’s Joggers. Each relay, if you want to form one, will have 11 members on it and each runner on the team  will run a 5k. Mitch, myself and my kids will all be running the 1 mile fun run. Races start at 7am and the event runs through 2pm. There will be all kinds of fun family activities and food trucks as well. We have designed a T-shirt if anyone would be interested in purchasing one. The link to sign up and the information on all of the races is  https://www.wolfsonchildrenschallenge.com/register  My email is amy@turnoversinc.com if you have any questions...

George had a wonderful weekend full of fun. He got lots of time to play with his sisters and all of the new toys that made their way into our house from all the Christmas mayhem. When we went in for our appointment today it was like we were the only ones in the whole building. We got the very first parking place in the parking garage. We walked through an empty lobby and up to the 8th floor which to our surprise was completely empty as well. They have a special playroom for the immune compromised children but George has never been allowed in there to keep extra precautions on him not getting sick. Well not today. Today he played and played and played. He was so happy. He always asks to go in there. There was also some sort of podium left in the room, I’m sure it was from a meeting amongst the staff. George hopped right up behind it and proceeded to bang his pen to get my attention and then yell gibberish at me. He is a natural politician. He got a great report from the dr and his labs ...

I don’t know who had more fun yesterday. George while opening all of his gifts or us getting to watch George open all of his gifts. This was the year of George for sure. Every single thing, big or small that he received brought such joy and laughter to us all. He is a character. The reactions were priceless. His personality is too funny. We had a wonderful day from start to finish. George was able to participate in it all too. It has been almost an entire year since he has been around some of his cousins and aunts and uncles so having them see how much he has grown and changed was really special. Christmas is such a wonderful day especially when you can all be together. Something interesting happened though. Jolly old St Nick changed to the Grinch overnight. George woke up with a chip on his shoulder. Ah the joys of a toddler. I was able to somehow wrestle him into the day hospital for an IV treatment and then over to Nemours for a dr appointment. Kicking and screaming the entire day. ...

George brought along some extra playmates to his appointment today. Since Bowers and Kate are out for Christmas break they were able to come help keep us company. It was high energy and fun. George was showing off and put on quite the show for his two favorite cheerleaders. He thinks he is big stuff around the floor and needed to show the girls all of his tricks and special treatment that he gets. They were impressed and went along with all of his silly requests and funny behavior. He introduced them to everyone who we came across. “Dis Bow Bow an Tate”. He loved having them come along. After his Nemours appointment we went over to visit Wolfson Weaver 4 to hug on all of our favorite nurses too. Kate was also able to love on her Jordan. The nurse that stole her heart when she was staying there. The best part from today though came in the form of his lab results. His hemoglobin was 14.1. His hemoglobin has never ever been that high. Never. It almost startled me. I had to ask if that was...

Today George is having another blood transfusion. His hemoglobin had dropped to 7.5. His platelets are up to 96 though which is amazing. They keep coming up on their own. His rash is almost completely gone so they will not have to do a skin biopsy. The graft versus host scare is on the back burner for now. Huge praise!! His toe nail is almost all healed up as well. So except for his hemoglobin dropping, George seems to be doing really good. Starting January 6th he will have 4 rounds of a strong chemo to try and combat the still active antibodies that are attacking his hemoglobin. He will stay on the elevated steroids for now to continue keeping them at bay until the new chemo starts in January. Today after a few rounds of clinic room baseball we decided that we would have a water play day. If you are going to stick us in a small room with a sink for an entire day then believe you me, we will figure out a way to incorporate it into our adventures. We filled up empty syringes and played ...

This morning we went in for a loaded appointment. A lot seemed to go down between yesterday and today with George. Last night while holding him I noticed a lump in his pajama leg. I unzipped him only to find half of his port access tubing. Yikes. I wiped each of the connecting ends with alcohol pads and reconnected it. I prayed over it that no germs were let in. We also noticed that he has a pretty bad in grown toe nail. This is much more serious in him because of the infection. He has been running a little fever last night and today and his diapers are bad again. At the appointment he had to have all his tubing and needles changed because of last nights incident. That is never fun. He has to do this once a week and so when we have to do it more then that it makes you a little sad for him. It’s not a pleasant process. We got instructions on how to treat the toe and found out if it didn’t get better on its own they will have to do surgery on it. So strange that an in grown toe nail co...

Over the weekend George was invited to go to an event put on by With Love Charity. It is a special organization that focuses on bringing joy to children who are going through cancer or transplants during the holidays. It was so touching and wonderful for George and his sisters to be a part of. The local programs they have set up for pediatric hematology and oncology patients are quite amazing. I can not wait until we are on the other side of this and can start to give back as well. They have given so much to our family and many other families. While at this event, one of the toys George was able to pick out was a baseball bat. The girls immediately screamed “no, not another weapon!” George likes to torture them at home with all of his make shift swords. George was so excited and his bat has been by his side ever since. It only seemed like the appropriate toy to accompany us to his dr appointment this morning. I’m sure all the staff was pleased with our choice. No one was injured and Ge...

Today George’s labs came back alright. Not great but not bad either. His hemoglobin dropped but just slightly to 10.8. His platelets did the same. They slightly declined to 37. He was cleared to go until Monday without any transfusions of blood or platelets. That is a huge praise! They are still declining though so please still be praying for the hemolytic anemia to go away. It certainly has slowed up so that is very encouraging. Monday we will talk with the dr about what the new plan will be since his last dose of IV chemo ended last week. The decision will be to either start up a new chemo or just let the one he is on daily ride out the problem to the end. I am obviously praying for the later. He still has a rash all over his stomach and back. I was given some special steroid cream to treat it. Here’s hoping it isn’t the rage kind again. I picture rubbing it on his skin and him turning green, muscular and angry like the Hulk. Fingers crossed that is just in our imagination. Since Geo...

Yesterday George had his platelet transfusion. His labs came back this morning showing that the platelets came up to 41 which is still considered very low but that is way better then the 17 that they were the prior day. His hemoglobin had dropped a tiny bit but was still right at 11. He continues to have a rash all over his chest and back which is from the Fifths/Strep but other then that he has not gotten any fevers. Thank you Lord! Today he has been a little low on energy. I’m not that concerned. I just think that some days his body feels all of the side effects of the medication a little more then others. He only has two more weeks of steroids which is great news! He has slimmed down considerably and not so frantic about eating. His anger management has progressed tremendously as well.  When speaking with his dr today he mentioned something about graft versus host disease. This is when your body rejects the donors cells and the outcome is not good at all. I was not aware that th...

This past weekend was full of very special and fun times. We had a private visit with Santa, a Dreams Come True gingerbread house decorating party and the girls and I got to go to a family Christmas party as well. I was even able to slip away for a few hours by myself to go visit my best friend who was in town for the Art and Antique Show. While I was at the show I got a call from Mitch who said  when they were playing outside,  a neighbor noticed a rash all over Kate. She said that it was Fifths disease. It is a very contagious virus that shows itself with red checks and a rash. It is no longer contagious once the rash appears but low and behold George started showing signs as well. Normal children can handle this virus without any problems but in immune compromised children it causes anemia and can be very problematic. So what does it do to a child who is already anemic you ask? Well after speaking with George’s drs they assured me that he would be ok until today’s appointme...

Today George had to have a blood transfusion. On Wednesdays labs his hemoglobin had dropped to 8. Today when they checked he was at 10. That was the first time ever that his hemoglobin has come up on its own. This is a huge praise. I can only think that this is a turning point for George. He did still need to have his transfusion though. His labs also showed that his platelets had dropped. We would never want too many things to go right in one day now would we? They will check him again Monday morning to see where those levels are and determine if another platelet transfusion is needed. You know from all of my posts how amazing and fun Nemours and Wolfson are all of the time so you can only imagine what they are like during Christmas time. We were greeted by Jolly St Nick himself and his wife Mrs Clause when we arrived. George was so intrigued by Santa. This was truly the most realistic Santa I have ever seen. And trust me, I have seen a lot. We may be the most activity going to famili...

Today was George’s last round of one of his chemo treatments. Hip hip hooray! It was a busy and fun filled day to boot. The hospital staff from drs to nurses and artists and mascots all came for a visit. It was a revolving door of special guests all day. Art with a heart came for a private art lesson. Wolfie the Wolfson mascot came by to say hello. Our favorite two child life specialists came by with an awesome Cars advent calendar. We were even visited by a few surgeons that we didn’t even know but who had heard about George and just wanted to meet him. In the blink of an eye the 8 hour drip was complete. His labs from today did come back with a low hemoglobin however so we will go back on Friday for another blood transfusion. Hopefully this last round today of this type of chemo will have done the trick in showing that anemia who is boss. Even though the day went by relatively fast, we are both worn out. He is already feeling the effects from the treatment. Praying that we have a sem...

After a long and very relaxing, fun filled holiday weekend we got right back to reality this morning with school and dr appointments. This morning his labs came back showing that his platelets held at 44 which isn’t great but the fact that they held is. His hemoglobin dropped but not terribly. It was around 10.9 this morning. His ANC was at 4000 which is great but he was also put back on Neupegen last week so this is certainly the reason for that high number. He still is battling his cold which I know effects his counts so when they gave me the results today I was actually pleased. I was expecting them all to be much lower. He gets to skip going in tomorrow but will be having his 8 hour chemo treatment at the hospital on Wednesday. This is the one that makes him sick so please keep him in your prayers for that. This treatment is also the last of that one kind. Hooray for that!!! This is the treatment that is suppose to take care of the anemia problem. It will still be awhile before we ...