Georgie’s Journey

Sorry for the long hiatus on posting. With all this extra time on our hands we seem to have no extra time on our hands. My kids sure know how to keep me occupied. Like I mentioned before, we are old pros at the quarantine bit but the attached at the hip 24/7 routine is certainly consuming my every second.. I can’t complain about that because I know it’s a blessing buuuttttt, it leaves almost no time for me to get anything for myself done. So here I am posting an update on George a few weeks late. Thanks for hanging in there with me. I’ll be better I promise. The day hospital treatment the week before last went good. No problems and no sickness after. His labs last week were about the same as the weeks before but his hemoglobin had dropped a little bit more. The drs did not seem concerned so I will follow their lead and trust that everything is ok. Update on his face. You guys!!!!! It’s amazing to say the least. His face is not red at all. It is not crusty. It is not dry. There are no s...

Last weeks labs showed that George’s counts had dropped some. Not a ton but they dropped none the less. Today’s labs showed another drop. His hemoglobin is still at 10.3 which is good but it had risen to 11.2 a few weeks ago so it is a slight drop for sure. His platelets, although still descent, dropped to the mid 200’s. His ANC dropped too so he is back on Neupegen once a week to try and get his levels to stay high through the pandemic. For the past few months I’m sure you have noticed a change in George’s appearance. His face is always bright red and his freckles have really turned more into age spots. His skin is extremely dry and sensitive. He has had blisters come up on his face, arms and feet. Even though we slather him in sunscreen, he still gets really effected by the sun. He also has trouble with his eyes when it is bright outside. Well I knew that this was all side effects from his medicine but it was indeed confirmed today. He was immediately pulled off of that one medicine ...

I took George into Nemours on Tuesday and his labs came back great. His hemoglobin was up to 11.2. That is amazing. Simply amazing. What a huge praise!! Other than after he had a blood transfusion, his hemoglobin has never been that high on its own. His dr was so pleased. I still can not believe it. The treatments to stop the anemia worked. I think that everyone was beginning to think that George was some sort of medical mystery. But God showed them. He showed up big and sure enough healed our boy. I just pray that every day George gets stronger and healthier. Especially with all that is going on with the CoViD 19 virus. My prayers of complete protection over George and our family is something I pray all day about. I am so very thankful that he is getting stronger right now while this virus looms over us all. I think back to last year at this exact time. I was getting everything ready for George’s 2nd birthday party. I wanted to have a really special party for him since honestly, and I...

These past few weeks of seclusion and isolation really isn’t that strange to us. We are use to it, for the most part, because of George’s transplant rules. When you throw my husband working from home and the girls both out of school however it becomes a whole new ballgame. Good thing we all play well together because wow are we in close quarters. 24/7. The online homeschool programs have helped break up the monotony of trying to come up with activities. The closets are all cleaned out and the toys have been organized and are being shown new appreciation. The elastic in our pants is being put to the test. The tv is the all time hero of the century. Our prayers are heightened as well as our appreciation for people who have no choice but to be thrown into the war zone of CoViD 19. Just as we were starting to enjoy a little relaxation of being in seclusion from his transplant we are forced to tighten up the walls around us and protect our family and our boy. Going to Nemours today once aga...

It has been a wonderful time relaxing at the beach all last week. We had to come in for 2 dr appointments but headed straight back to paradise after. We had a really great time unplugging from real life and taking in all of the wonderful weather and peace and quiet. Last weeks counts were wonderful. His hemoglobin was up to 10.1. That is so awesome! He was looking and feeling great all week. We came home to the doom and gloom of the oh so real threat of this Coronavirus. It’s easy to check out and not feel stressed about something so big when you are all alone in a bubble of a beach house. Now that we are back, the heaviness of it all is looming. Kate woke up in the middle of the night last night with a fever. She seems fine today though. I feel a little weird health wise. Just not 100%. I took George in today for labs and his ANC has dropped below 1000 which means any fever he gets he will have to be admitted to the hospital. We will give him some Neupegen tomorrow to help boost the w...

Due to a dentist appointment, Kate couldn’t go to school so she was able to join George at his dr appointment yesterday. He loves having someone come with him to “his” dr. He shows off big time. The child life specialist that works on the 8th floor at Nemours has a basket full of light up toys to distract the kids when they are being accessed or getting other treatments. These are George’s favorites. He told his nurse right when he walked in that he wanted Joli (the child life specialist) to bring in the light ups for Kate to see. He turned off the overhead lights and they started their very own rave. Now what’s a rave without rave music? You know I had to. Luckily the staff knows we always have loud parties in our room so they are use to our dance moves and noises that come with it. George’s labs came back this morning and guess what? His hemoglobin is up again! On its own. It came up to 9.8. I can’t even with this great news. It’s happening. His anemia is finally going in the right d...

Yesterday George spent the day at Wolfson day hospital to receive an IV treatment of antibodies. This is a long process so we camped out for the day. George always brings something with him when we go places (not annoying at all) and so this time he chose to bring his bug catching net. This net has brought so much entertainment to George. He catches anything and everything he can. Including people. He insisted that this was the best toy to bring since there were so many bugs and fish at the hospital. As we walked the long winding path through the different hospital halls he swooped left and right and up and down. Other pedestrians were leaping out of harms way as the Exterminator did a thorough sweep of the premises. Never a dull moment with this guy. The labs that were taken yesterday came back with pleasing results. His hemoglobin had once again held at 9.2. His platelets were up and thanks to the Neupegen so was his ANC. So much so that we get to stop taking it for the time being. T...