Georgie’s Journey

The big email with news about his health did not end up coming after all. Just when I get all excited to share hopefully wonderful news. Consider it a movie trailer. We can all sit on the edge of our seats waiting with anticipation for the actual release. George’s labs did come back from Thursday’s appointment and they were great. Hemoglobin still holding strong at 10.6. Platelets at an acceptable 267 and his ANC at an impressive high. It was even flagged as “high” on the results page. This was particularly great news because I decided to take him off of his weekly Neupegen shots a few weeks ago to see if his body could bump them up on his own. Well they sure did. They are showing off. I know I have said this before but it always is so exciting to me when his Neutrophil count is high since this was why we started this process in the first place. A body that did not produce any on its own is now registering “high” on the standards chart. Without medication. It really blows my mind. I ha...

I am sorry I haven’t updated over the past few weeks. George hasn’t had anything to update you on other then enjoying his summer so far. His counts two weeks ago were great. We went back to the dr today for more labs and will find out the results tomorrow. I will hopefully have some exciting news to share tomorrow so stay tuned. George seems to be thriving. He loves life to the fullest. More news to come on everything in his life. I promise. Thank you for continued prayers. I look forward to sharing when I get a call from the dr tomorrow. Until then, here are some pictures of summertime Georgie.

Today we went to the Day Hospital at Wolfson for one of George’s monthly treatments. George did not even put up a fight when I dropped the girls off at my moms house before. Was this a sign as to how the day would go? We walked up to the hospital and they had installed some really cool infrared cameras to check to see if anyone was sick. I felt like we were in a Mission Impossible movie. Maybe I’m easily impressed but I thought it was so cool. They have closed the hospital gift shop and it was empty. I hope they are able to reopen after this all settles down but for today I was excited that there wasn’t an option to buy George’s M&Ms which meant no tantrum. Was this the second sign of good things to come? We got started immediately on the IV with hardly a fuss when he was being accessed. He had several snacks. He watched an Elmo movie. We played a matching game. We played with play doh. Before we knew it, the beeping of the IV pump was indicating to us that his infusion was complet...

Each week our sweet sweet neighbor bakes homemade cookies for me to take into the nurses and drs at Nemours. She never misses a week. At this point I don’t think I would be allowed to enter the doors at Nemours if I didn’t have the cookies. They love that I bring them and they appreciate it so much. They even have a guessing game as to which kind I will bring each week. It is such an amazing gesture and labor of love that my neighbor does on behalf of George. I get all the credit even though they are fully aware that she makes them and not me. I look like the hero when all I am is the delivery girl. Well, we also have the duty of taste testing them before we give them to the staff. You know, making sure they aren’t poisoned. Someone has to do it and George and I are just the right candidates for the job. I have to cut him off at 3 so there will be some left for everyone else. I will not confirm the number that I cut myself off with. We love them just as much as the nurses and drs do. I...

Yesterday we woke up extra early to get the girls started on homeschool and then rush into Wolfson Day Hospital for George’s treatment. It was all going smoothly until we passed by the hospital gift shop where George use to be able to pick out a pack of M&Ms after each treatment as a little treat. Well guess what is closed because of CoViD19? Yep, the hospital gift shop. Nothing slips by George. I tried pointing out the cool murals on the opposite side of the room as we walked down what seemed to be worlds longest hall with glass windows showcasing all the treats and goodies that the gift shop had to offer. Silly me. George was onto my diversion tactics from the jump. I can easily just explain to him that the shop is closed so we couldn’t get the M&Ms right? That would be a big fat NO! So this is where the first tantrum began. Yes I said first. We woke up any tired employees drifting off. We woke up any babies trying to sleep in their strollers. We put whiplash into the necks o...

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 ...