Georgie’s Journey

Well this week is technically Thanksgiving break but it really wouldn’t be a holiday without the Mitchell family getting sick. Kate, George and Mitch all have colds. I’m certain Bowers will be going down at any point too. Thankfully this is not a bigger virus then it is. Just a typical hard hitting cold that accompanies runny noses and coughs. Monday George’s labs were a little low so with the long weekend coming up they wanted to make sure he was all taken care of.  He had to get some Neupagen yesterday to raise his ANC and will keep taking that until his counts come back up. His hemoglobin has dropped again so he is currently in the middle of a blood transfusion. His platelets did go up to 82 so that is a praise! He will leave Nemours after the transfusion today and head to the hospital for an antibiotic IV drip. He was not suppose to still be getting this one but since his counts were low they decided to go ahead with another round. Tomorrow we will come back in for labs and hopeful

Today was the day. Kate’s big thanksgiving singing performance at her school. She was so excited about it. I worked it out to take George in first thing this morning for labs and then go to her program and then back to the hospital for his chemo. Well it was all falling into place when his tubing from his port came unclipped and blood started pouring out of it. After soaking through his clothes we clipped it back up and headed straight back to the hospital for them to fix the problem. But as they say in show business, “the show must go on”. I was not able to go to Kate’s program. Daddy and MomMom pulled through in a pinch and were able to go support her and send me video. Kate nailed it and was happy to have the surprise guests. George’s hemoglobin held from yesterday so no blood transfusion for today but we are here for his 8 hour chemo IV drip. Since his antibody levels were raised the dr decided to go ahead and continue this treatment. Although the day did not go as planned it is st

This morning at George’s appointment he got a flu shot. He was so good. Just one little yelp and that’s it. Needles to the leg are no thing for this guy. His hemoglobin has dropped but not enough to have to have a blood transfusion today. We will go back tomorrow morning to check again. That test will also determine whether or not he needs to get his chemo treatment that is scheduled for tomorrow afternoon. I am really praying that he will not. I am planning on it happening though and know that even if he gets it, it is for his benefit to get the anemia under control. We were also told that he is 100% Kate in the two out of three categories of his complete marrow. His third marker is coming up too. It is at 88% now which is up from a few weeks ago. Soon he will be all Kate!!!!  This is a huge praise. Thank you Lord for bringing us that much closer to the end goal. It’s so crazy how this all works. It is working though. That’s all I care about. It is not guaranteed yet at this point bel

This past weekend was the coldest it has been since last winter. We welcomed it with open arms. Mitch had some good friends from high school come in town for a visit so me and the kids camped out at my parents house while they are out of town. We stayed in pajamas almost the entire weekend and watched a whole season of Little House on the Prairie. It was a childhood favorite of mine so I was so excited to see that all 9 seasons are offered on Amazon Prime. It’s the little things these days 😂  Monday morning we were back at the dr as usual. His counts came back ok. Not great. Not bad. We will go back in Thursday for another blood transfusion and then we will check into the day hospital Friday for another round of IV chemo. Fun things from the week have included Thanksgiving themed donuts from Krispy Kreme, Christmas card photo shoot, Bowers’ Thanksgiving lunch at school and Kate’s thanksgiving program at school. Thursday night Mitch will be out of town so I have something special and f

Yesterday was George’s 100th day of his new life. It was 100 days since he received Kate’s marrow. This was the day that the drs always would talk about as being a milestone in the transplant. Why? It is suppose to be a marker to show whether or not the transplant “took” or was successful. Successful in the sense that it was working the way it is suppose to. According to his drs, George’s transplant was a success. Praise the Lord!!! Before all of this began we heard all about the 100 days. We were told to expect to be in the hospital for 100 days. We were so fortunate to only have to stay for 30 days and then only an additional 10 days since. Even if we do come to Nemours three times a week we are still “outpatient” which is really huge in a transplant situation. 100 days was also, in my head, the day that we would celebrate with George being healed. It’s funny how you set these things up in your head before knowing what it is really like. So yesterday came and went without really any

After 10 days in the hospital, we are home!!!! George is so happy to be here. He really loves his house and his sisters. We went on a good walk this morning for some fresh air and to feel what being outside felt like again. Still hot 😂.  But it did feel great to soak up the elements. We go back to Nemours tomorrow for the day for another platelet and blood transfusion. His counts had dropped some as we were leaving but they let us come home regardless to give us a little break. We will be there Thursday and Friday as well but hopefully just for his chemo and not for more transfusions. I thought for sure we would both sleep so great last night since we were finally back on our own beds. Well, maybe tonight will be the night. I think George was so excited to be here that he was up most of the night. Either that or we missed all of the middle of the night nurse checks and beeping alarms. Whatever it was will hopefully pass and we will be snoring all night long tonight. We are so gratefu

George was able to de access (take the needle out) of his port last night to give him a little break from it. He had to get another platelet transfusion yesterday because his counts had dropped a little but the dr said he was certain George would be able to go all of Sunday without anymore transfusions so no needle for today. We took advantage of that by taking a long hot bubble bath. He isn’t able to bathe other then with special hospital wipes when his port is accessed, which is always. After about an hour in the mommy churned jacuzzi he was all clean and refreshed. It’s amazing what a little spa time can do for the soul. He will get his needle placed back in this afternoon and will have another chemo treatment tomorrow. Then,  if all his counts are holding, we will be checking out of the “Resort by Wolsfon at Weaver 4”. Praise the Lord that he seems to be moving in the right direction now.

George’s dr got to get a good look at his marrow labs from yesterday. He reported back to us that His marrow looked great. It was all functioning just as it should. A huge praise!! He said that the dropping in his counts is indeed due to the hemolytic anemia. They thought this all along but needed to be sure it wasn’t something more serious. His counts also came back today looking great. His platelets held at 41. His hemoglobin held at 10.2 and his ANC was 6000. He was able to adjust his dose of steroids to a smaller amount. Hooray. He won’t be fully off them for another month but the weaning process has begun. We will be staying in the hospital through Tuesday. George has to finish his IV chemo and then we can take the other stuff orally and check out and then it’s just back to our M-W-F appointments at Nemours.   George is not allowed to leave his room as a precaution for not only him but for the other patients on the floor as well. I drink a lot of water throughout the day and the w

Last night Georges platelets didn’t arrive from Gainesville until 2am. Once he received that transfusion we were able to try and get some sleep. After some tossing and turning we were up for good and taken down for his bone marrow aspiration. It was a quick and successful procedure. He was back up in his room by 10:30. He was tired but seemed to be feeling pretty good. After a big chick fil a lunch, George was surprised by Rooms Come True. This is a wonderful program that comes to children’s hospital rooms and decorates them according to their likes. When I thought I had seen it all from this wonderful hospital they went and blew me away. George had his whole room decorated with a Star Wars theme. Not just decorated walls either. They got him complete bedding, giant stuffed animals, action figures, books, decorative throws and pillows and even some other non Star Wars toys. Now you may think that George doesn’t fully understand what Star Wars is but that is not the case. George has see

Today was pretty uneventful. George had his 8 hour chemo drip and so far no sickness from it like the last time he had it. I guess the Zofran worked. His platelets had dropped again so he was suppose to get his transfusion earlier today but the platelets that came for him were expired so they had to call for some new ones. They get all of George’s blood and platelets from Gainesville. They still haven’t arrived but word on the hall is that they will be here by 9pm. So he will get one tonight and then again early tomorrow morning. Tomorrow morning at 8am he will have his bone marrow aspiration. This is that procedure where they go into his hips to collect bone marrow so they can examine it and understand how it is working. This is a procedure that he has to go under for which is always an uneasy feeling for me. This time even more so though since his counts are so low. Remember, platelets are what clots your blood so when you have ultra low platelets you are bringing on a whole new set

Yesterday was a long day. I’m not sure that there was even a five minute window that there wasn’t someone in our room. We woke up to having to have another platelet transfusion. Then we met with drs about the general plan (which is still a little unclear). Then we had chaplains, nurses, child Life specialists, magicians and dogs all come by before lunch. He got a new wooden train that was loaded up with all kinds of fun animals and veggies. He had a private magic show preformed for him.  He hung out with Zoe the therapy dog. He had lunch brought to him from his aunt Rachel. He had his favorite nurse from Nemours come visit and bring him a card signed by all the staff over there. Then he began his 6 hour IV antibody drip. This requires vitals checks every 15 min. So obviously no nap for George yesterday. Just as he was tiring out and starting to feel a little sick, a care package from his Gigi arrived and among all of the fantastic food and toys was about the coolest thing he has ever

George had to get another platelet transfusion in the middle of the night last night. They had dropped again to 4. His hemoglobin held at 11 and his ANC was around 950. This week will be a week filled with lots of action for George. More chemo today. Tomorrow he will have an antibody IV treatment. Wednesday he will have another Rituximab treatment. Thursday he will be put under to have a bone marrow aspiration and then Friday he will get another round of chemo. We will either be released Friday afternoon or Sunday depending on how his counts are holding up. It’s all pretty confusing to understand. I have to just trust that the drs know exactly what to do and also trust that God will protect George and heal him. We are confined to our room which is a little tricky when you are 2 and on steroids. But fortunately George  loves to play so that is keeping us busy. Also on a sad note but has for sure been top interest to George, 3 birds today have flown into our glass window and fallen to th

George’s counts came back this morning lowered again. His hemoglobin was at 9 and his platelets were at 3. He had an allergic reaction to one of his new medicines and so they had to change it to something comparable. He got a platelet transfusion and a blood transfusion. All of his regular doctors will be I. To meet with us tomorrow morning and so hopefully we will have a plan with a promising outcome. I have been praying a lot for his doctors. They are so wonderful and so smart. They love George and put in so many extra hours consulting with physicians all over the world for advise on George’s case. His latest diagnosis of his hemolytic anemia is Evans syndrome. They have only had one other case in the past three years and it was with an adult. They haven’t ever had it with a child. It seems like every day there is a new problem or rather the solution that they think will work, doesn’t. I know that this will be ok. I know that George will overcome all of this. I believe this with all

As I arrived home yesterday afternoon from our day at Nemours I got a call from George’s dr saying to take him immediately to the ICU. His counts had plummeted within a few hours and it was a dire situation. Once there we immediately started on blood and tests and a whirlwind of various nurses and drs trying to get him stable and come up with yet another plan to deal with this problem. They did all agree on one thing. He sure didn’t look like a person with such low counts. After discussing some not so pleasant options on how to stop his antibodies from attacking at such a rapid rate they retested his blood. Thank the Lord his hemoglobin was up to 7. The test that showed that it was at 4 was a misread or it was a read that had been mixed with the flush from the IV tubing. This was such a relief to everyone. We were able to come out of the ICU in the middle of the night and move onto Weaver 4, our home away from home. George could sense the familiarity and calmed down significantly. We s

When we came back up to Nemours yesterday George’s labs came back and shocked everyone. All of his levels had bottomed out. His ANC was 200. His hemoglobin was 8. His platelets were not even registering. He was immediately administered IV fluids and had lots more tests run. The drs were scratching their heads at why this was happening. None of it made sense. One thing was sure. He needed a platelet transfusion, a blood transfusion and Neupegen to try and get his counts back up to a safe place. We got the platelets and the Neupegen last night but his blood has to be special ordered so it wasn’t ready. We were home just in time to see the girls walk in from trick or treating. They had a great night even though we weren’t able to be with them for the fun. Fortunately we attended several Halloween events leading up to the actual big day so everyone including George got in on the fun. We are back at nemours this morning. We were told he has C-diff which is a bacterial infection in his inte