Georgie’s Journey

Today George went in for his first ever blood transfusion. His hemoglobin had gotten so low and was at an all time low this morning, 6.5, from all of the blood draws recently. Little did we know that this transfusion was going to last for 3 hours. Now I can come up with some pretty creative ways to pass time at long appointments but this one was gonna be a challenge for sure. Especially since he was totally over being there before we had even arrived. After the first 45 minutes of testing and vital checks he began the transfusion. Things started off pretty well until about 30 minutes into the movie that was turned on for us and George decided it was time to go home. Enter bag of tricks. We read some books. We stacked some blocks. We beaded some necklaces. Then we found the drawer of medical supplies. Naturally I used the bandages to make sweat bands for his head and wrists and he was instantly transformed into his alter ego. Think of a cross between a professional wrestler and a karate...

Yesterday, remember, was my wonderful and much needed “day off” since George was allowed to skip one day of labs to give his body a break. He had such a nice day. He even took a morning nap which he hasn’t done since he was a little baby. But it wouldn’t be a complete day unless I went to the doctors so on “national daughters day” my two beautiful and lovely daughters made sure I got to go. I was called by the school nurse to come get Bowers because she had a staff infection and would not be allowed back at school without a drs note. I was aware that both she and Kate had this, but I had been treating it and had them well covered up so it was not exposed to anyone else. So after an adventure to the pediatricians for more medications and notes allowing them back to school, oh and flu shots to boot, we checked the daily dr visit off my list. This morning at George’s appointment we got the great news that his platelets were 33!! Yes 33. All by themselves. His last platelet transfusion was...

We started George on his appetite stimulant yesterday to see if it was going to improve his eating. Surprisingly it did seem to work. At least for dinner. He cleared a huge plate of food and asked for seconds. He even ate dessert and asked for snacks later in the evening. Just when I was getting excited that this could be the big break we needed as far as weight gain, he threw up.  Everything. This cold is causing mucus to drain in his throat. He coughs to clear his throat but then gags himself and throws up. This continued several times throughout the night. Three bed changes later we woke up and headed to the day hospital for his IV treatment. While we were there they did blood cultures to see where he was with his counts so they could administer a transfusion if needed. George laid absolutely still in his bed and watched the movie Minions which made the hour and a half long IV drip very easy and relaxing. I almost fell asleep at one point. When we finished, they had the results ...

George woke up with a case of the Monday’s. He must have known it was going to be the beginning of a tough week. He fought hard to not get dressed. He fought hard to not be carried to the car. He fought hard to not be strapped into his car seat. He got himself so worked up that he proceeded to throw up all of his breakfast and morning meds while en route to his appointment. I’m certain the homeless man waiting at our stop light asking for some money even felt bad for me while we were waiting on the light to turn green. George has an extra special set of lungs. After his labs came back today the drs were still confused as to an exact reason for his platelets to not be coming up. His hemoglobin stayed the same as it was from yesterday and even though it is lower then they would like, it could also be contributed to all of the blood that is taken from him daily. So that isn’t of concern at this time. He did not end up having a platelet transfusion today like was scheduled because they wan...

Is it weird that we actually felt at home when we checked into the hospital this morning? Right when we walked into our room George immediately unpacked all of his snacks into the mini fridge, climbed into the bed, crawled onto the window sill and then promptly asked for his toy. When you are spoiled by the nurses for so long you know what to expect. Word had already gotten around the floor that he was coming in so we had lots of visitors within the first 30 min. All of George’s fan club was overjoyed to see him. Weaver 4  immediately lit up upon his arrival. We love this place. These people and all their sweetness and encouragement. It makes us happy to be back even if it’s just for the day. Labs just came back and his hemoglobin is up a little from Friday so he will not be getting a blood transfusion today. His platelets also were up to 12 which is great (for him). Again, normal range is 150-800 but George has been at 8 and 9 so 12 is awesome news. What does this mean? Who knows ...

George’s counts this morning were not improved. His platelets had gone down and so had his ANC. His hemoglobin went up 2 points but is still really low. His body is not responding to the platelet transfusions for some reason. He had another one today and we will check into the hospital on Sunday for the day to get one as well. They will have a blood transfusion ready to go too in case his hemoglobin doesn’t come back up. They are going to start cross matching his platelets that he receives to see if this will help them come up. What this means is that they will take the platelets and try and match them exactly to his own platelets. Right now his body is killing them off right as he receives them because they recognize them as being foreign. We need specific prayers that his transplant is not starting to fail. We need this all to turn around and for his body to regain all the forward momentum that it started with right after he received Kate’s marrow. Something is going on right now and...

Counts came back again this morning with super low platelets. 9. So even after his transfusion on Tuesday afternoon they are still not coming up. Or not staying up. So he got another transfusion today. Also his hemoglobin has dropped. He will go in tomorrow for a blood transfusion as well as a platelet transfusion. He will go have another one on Saturday as well.  They want to do another bone marrow aspiration on him to see what is going on. This will be next Thursday. This is the surgery where they drill into his hips to take some marrow. The drs are not sure what is going on since his other counts seem to be just fine and have engrafted. So we take a deep breath and put back on our armor and get through this.    We will pray hard for his platelets to snap out of being so lazy and kick into overdrive. We need these up. We will pray for his hemoglobin to rise back up. We need you Lord. Keep healing George. Keep his progress going in a positive direction and not to turn. G...

This morning George had his regular dr appointment where they draw labs. We showed them how his skin had several areas of petechia (the blood rash). This can be signs of Graft versus Host disease. He has not been eating very well either. They told us to watch out for more or worsen petechia  and any signs of stomach pain or diarrhea. After we were home for a few hours I was called by his dr and told to bring him back in for another platelet transfusion. His platelets has dropped to 8. Normal range is around 150. As soon as we got there he also had a big diaper of diarrhea. He just finished his transfusion and now we will wait to see what happens with his levels. He will go back in on Thursday morning to be rechecked unless things take a turn for the worse before then. All of his other levels and counts were really good so the dr is still holding onto hope that this is just his cold virus that is making his platelets drop so low. All of the other signs however are pointing toward Gr...

This morning George’s drs called and and wanted us to come in so they could run some more tests on him. His counts from yesterday came back a little low. He also woke up with petechia running down both arms. It is a rash that looks like little blood pin holes everywhere. It can mean a few different things one of which is very low platelets. So he is now having a platelet transfusion. We will find out later today what the tests that were run today say. The dr still thinks that this is all from his cold but can not be positive and since his counts are still dropping they need to be looking into everything. The little trouper always gets to pick a toy from the treasure box they provide for the patients. Today’s pick was a unanimous one and I could only laugh and oblige to his selection. I have a feeling that this toy today will be a trigger of some fights when we get home between his sisters. They will be jealous for sure.  Prayers for some good news later and for George to be getting...

Today George had one of his dr appointments. He goes twice a week for them to do blood work and give him a check up. They like to keep close tabs on him and his progress. He has not been on Neupegen, a marrow stimulating drug, since last Thursday. Last Friday’s ultra high ANC (absolute neutrophil count)  was a result of the Neupegen. He was on just a small dose every other day to encourage the new marrow to rev up. A normal ANC should be between 1000 and 8000. Before his transplant he would get a daily shot with a “mega dose” of Neupegen and his ANC would always stay around 800-1000. Today his ANC was 5900. That is amazing! No Neupegen there.  Just some good old fashioned big sister super blood. We will no longer have to take Neupegen. Her blood has taken over his blood and he now has a normal working blood stream. This is so crazy for me to think about. Does not seem real. His own blood could not even produce one neutrophil on its own. Not one. Now he is making them just like...

George had labs on Friday and his ANC came back 29,000. I mean is this for real?? God is the real deal people. Praise his wonderful name. All of this, every single second of this transplant (and before) has been God. We are only here to enjoy all of his graces and mercies and love. Can’t take one day for granted. Especially when we are being so well taken care of by our loving God.  All thanksgiving to him.     We are in full force real life once again. George comes with me to work and sits in carpool lines, ballet pick ups and on and on. Good thing he loves wearing his mask. Never once complains about it and even asks for it sometimes. Life is good right now. More appointments this week and I will report back with news as it comes in. We are happy and hot. It has been 100 degrees here the past few days. One of which was standing at a soccer game for an hour and a half. George didn’t come, don’t worry. He is still in his bubble at home and in the mini van running his sist...

We dodged a bullet with this storm. Not only did we not have any damage, flooding or power outages, we barely even had rain. We also survived being all together for 7 days under one roof and being confined to the indoors because of George. Can I get an AMEN! I mean it was touch and go a few times with the kids bickering. We did enjoy some good family game time and movie marathons too. We pulled out a barely loose tooth of Bowers as one of our forms of entertainment as well. Can you tell we were bored. We all managed to get the same cold with low grade fevers as well but nothing that was a threat to George’s health thank the Lord. We will go in for another appointment tomorrow to check his counts and internal health. On the outside he seems to be doing just wonderful. He even looks to be getting his normal skin color back again. He has been so pale for a few weeks. His energy is high and his attitude is amazing. Always playful and always making us laugh. He has a really funny personalit...