Georgie’s Journey

George had his first treatment with the new medicine yesterday. He did great. The hours flew by and we were kept busy the entire day with fun. Wolfie theWolfson hospital mascot came for a visit. We dressed up like Batman and walked around the floor waving at all the kids in their rooms. We trick or treated at the nurses station and watched a few cute movies. It was a very pleasant day stay. At around 8:30pm George was awakened  by himself throwing up. He continued this all night long as well as terrible diapers. The side effects from his medicine yesterday listed these as possible side effects. Welp, they happened. A lot. He seems pretty tired and a little lethargic this morning but I’m not sure if that’s from the medicine or from the lack of sleep. It’s weird because throughout all of his chemo and all of the other medicines he has ever been on, he has never gotten sick. Not at all. So this was a little sad to see for him to go through. We have an appointment at 1:30 today so we w...

Yesterday was an anxious day leading up to a reality that I did not want for George. His hemoglobin at his appointment actually held but with that they also did not improve. We were able to leave without a transfusion and were told we would get a call to see what the plan was going to be for his new medicine. Well at 8:30 last night I got the call from his doctor letting me know that George would indeed be starting a new plan to get the antibodies under control. Even though his hemoglobin held, there was also a rise in the counts on another marker which shows how hard his body is trying to keep up with making new hemoglobin. This should not still be happening if the steroids were working how they had anticipated. So this was why they made the decision to start a new plan of action. Tomorrow George will check into the day hospital and begin an 8 hour IV drip of a medicine called Rituximab. This is a drug that will kill off all of his antibodies. He will receive this once a week for the ...

Well, George’s hemoglobin held. Can we get an Amen!!! Thank you Jesus. Praise the Lord. His hemoglobin was at 10.1 this morning. Deep sigh of relief. We do not know what Mondays labs will show so the new treatment is not off the table but we are free to enjoy our weekend free from the stress of impending problems. We serve a mighty God. All praise to Him for continuing to protect and heal George. Keep on battling those antibodies buddy. Your hard work is paying off. And the Lord, He is the One who goes before you. He will be with you, He will not leave you nor forsake you; do not fear nor be dismayed. Deuteronomy 31:8

This morning George’s labs showed two things. First they showed that his hemoglobin held at 10.7. His platelets are up to 115 and his ANC is 5500. All great things. Rejoicing in this great news. The test also showed that his antibodies were up too. Which is what is eating away at his hemoglobin. His body is working so hard to keep up with the rate of destruction that the antibodies are causing. We go back on Friday for more labs and if his hemoglobin has dropped anymore then he will have to start a new medicine. This new medicine would be administered weekly and each treatment takes 8 hours. This would go on for a few months. It also would be killing his entire immune system which would put us back on total seclusion again. On top of this treatment he would still be going in for daily labs for them to keep a close watch on him. Now this is not at all what I want for George. This would not be my choice for his journey. George’s journey however has never been and will never be my choice....

George’s counts came back pretty good this morning. His hemoglobin has dropped down to 10.9 which isn’t wonderful but it isn’t bad either. His marrow is producing red blood cells like crazy so they said eventually his antibodies won’t be able to keep up with killing them and basically will throw in the towel and give up the fight. They are going to wait another week before deciding whether or not to put him on the new medicine to help with the anemia. His doctor seems to think he can beat this with the help of the steroids so he wants to wait to see how this week looks as far as counts. His platelets are back up to 90 which is a huge praise. They had dropped back down to the 40’s last week. His ANC is off the charts high. This is so crazy and wonderful. That was always the only count that I would look at with his appointments. So just thinking about how his disease has been cured is really surreal. He will go into the hospital tomorrow for his monthly IV treatment of heavy antibiotics ...

This morning George’s hemoglobin came back at a whopping 13.9. Say what??!!!! That’s right, just when he was to be put on yet another medication to try and fix the anemia he goes and blows everyone away with his awesome counts. Rejoice in the Lord always, again I say rejoice!!! We never met with the drs to discuss the results but we will meet on Monday and see if this indeed means that the anemia worked itself out. Just as always we are prepared to hear something totally different on Monday but for now we are believing that this is the case and that is enough cause to head into the weekend heads held high and arms raised even higher thanking our Lord for this wonderful news. Tomorrow George has his photo shoot for Wolfson 55 patient of the year. Hopefully the steroids won’t kick in until after the pictures have been taken. I’m not sure if “temper tantrum” is the look they are going for. Since the transplant has begun only a hand full of people have seen George in person. In the past fe...

Today at George’s appointment we were given the great news that he didn’t need a transfusion today. His hemoglobin went up to 13.5 since Monday. Praise the Lord! Also, his blood pressure is up so he will have to increase his blood pressure medicine but hopefully this will all work itself out when he comes off of his steroids in a few months. He needs some prayers about his hemolytic anemia. They do not think that the steroids are fixing the problem so on Friday they will be starting him on another medicine to see if this will correct the issue. If that doesn’t work then he will have to be put on a drug that will wipe out his entire immune system for a few months. That would be terrible. We do not want that. So let’s pray that Friday’s blood results come back at with a strong hemoglobin count so we can start putting this issue to bed. God can move mountains. Please heal our boy. His bone marrow is working wonderfully, too good actually. This is why his antibodies are attacking it. They ...

Today we are at nemours all day for a blood transfusion. His counts came back with another low hemoglobin. He was at 6 when we got here this morning. They still don’t seem all that concerned with this downward trend but also still can’t give me an answer as to why it is still happening. It is all just a waiting game at this point to see if it starts correcting itself. Hopefully this transfusion will last a few days so we can have a day or two break. Today has been a play dough day. Luckily in the generic pack that I bought there was black. One may think this was an odd color to have in a kids set but fortunately for us it is Halloween season so it really came in handy. Lots of snacks. Lots of movies. Lots of molding and creating. Only a few melt downs. I say it was a pretty good first half of the day. Now let’s try and survive the second half. You got this Georgie. Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12

This morning George’s hemoglobin has dropped again to 8 so he is going to have to have another blood transfusion. Good news is that they think he can wait until Monday to have it.  I haven’t spoken to any of the drs yet about what’s going on specifically so I don't know what the next step will be. I will be able to meet with them Monday to discuss everything.  This morning was the first morning that they allowed me to give him a smaller dose of the steroids but I am guessing that this will be the only dose to be that fortunate. So we power through and get over this hump all the while praying praying for his body to work itself out internally. I have complete peace and confidence that God will heal George fully and protect him along every step of this journey. Through all the ups and downs. This has been a roller coaster in every sense but we are buckled in tight and are grounded knowing who our healer and protector are. ~But the Lord stood with me and strengthened me. 2 Timot...

The good- George was able to skip his blood transfusion today because his numbers only dropped slightly. Not enough to require intervention. The bad- George will need to stay on high dose steroids for another few months to make sure his antibodies stay suppressed. The ugly- George will need to stay on high dose steroids for another few months to make sure his antibodies stay suppressed. All I have to say is poor buddy. His moods are up and down (mostly down) and he is overwhelmed by anger and frustration. I just have to keep reminding myself that it isn’t his fault and have compassion for him for what he must be feeling like inside to be acting this way outside. On a positive note, he has gained 3 lbs since Friday and doesn’t seem to be slowing up. His food of choice is chick fil a nuggets and Life cereal. Part of being in a transplant you have to be on a “transplant diet” which means no outside food or food from restaurants since there is no way to control the elements at which th...

All day Saturday and most of the day today we were able to be with our favorite drs and nurses on Weaver 4. It took no time at all to settle right back in to ruling the floor, or in George’s mind at least. I really do think that George thinks that floor is there only for his existence. Blood work from Saturday showed that his hemoglobin was low again and so he had his transfusion. Blood work from today showed that they had held from yesterday so he was able to skip the transfusion. So we came home in time to catch a nap and the second half of the Jags game. We will go back tomorrow to nemours for another transfusion. I spoke with one of his drs yesterday about this hemolytic anemia diagnosis and he gave me some reassuring answers. Since George was diagnosed with his disease at 5 weeks I never chose to google it or look up any information on it. This was my way of protecting my heart and mind. Whenever I have a question I ask his dr and then I am able to get answers that pertain directl...

We went in this morning for George’s blood work and scheduled blood transfusion. After hours of testing we were then told that he would not be getting a transfusion today after all. The tests came back today and showed that he had hemolytic anemia. His own body is attacking his blood. He was put on a high dose of steroids and will continue this for 14 days to help settle his antibodies down that are killing off his hemoglobin. He will be checking into the hospital all day tomorrow and all day Sunday for testing, monitoring  and to get a special blood transfusions with blood that has been closely matched to his own. Monday we will continue this same treatment at Nemours. He will need to very closely monitored for the next month to see if this problem corrects itself. The steroids, amongst all kinds of other terrible side effects, causes high blood pressure so he was also put on a blood pressure medicine along with a medicine to help prevent his stomach from being torn apart from th...

Today we were joined by Aunt Becca (my sister Rebecca) who drove in from Gainesville to help out and keep us company during the transfusion. She is the BEST!! She brought a big bag of activities, books and snacks to help pass time while we are in the tiny room. It wasn’t just any bag of treats. It was a Halloween themed bag of treats. Rebecca was born on Halloween so you can always count on her to have some extra fun and special holiday themed goodies. We are crafting, reading books, shining spooky flashlights and eating candy. It will be hard to top this day of fun. After tests and many phone calls to other physicians in the field, George’s drs think what may be happening is that one of his medications to prevent Graft versus Host disease, is making his hemoglobin drop. It is a “phenomenon” that occurs in some patients. So we will change his medicine to another type but will still need to get transfusions often until the end of his 100 day mark which is mid November. The good news is ...

This weekend George started looking a little yellow to us. Since he naturally has an olive complexion we weren’t sure if it was his pale skin just appearing yellow or if there was a problem going on inside with him and which would be making him yellow. This could be a sign of low hemoglobin or jaundice which would mean there was a problem with his liver. Yesterday his energy level was way down too. On the way to our appointment this morning he even fell asleep on the drive over which had me concerned. When the drs walked in the room to check him out they were shocked at how he looked. They quickly drew his labs and ordered blood for him. Just as they had suspected his hemoglobin was down to 4.9. This is incredibly low. It has dropped substantially since his transfusion on Friday. They were not sure why. The tests showed that his platelets were up to 86!! Praise the Lord!!! And his ANC is at 5600. Awesome! All the tests they ran showed no reason for his hemoglobin to have dropped which ...