Today is another day of worry and new meds! Last night I received a call from the BMT office. The copies of HHV6 have increased quite quickly up to 1600 in just a few days. This morning Quinn will start a new med which is much stronger than the other. Hopefully, this will kill the copies in his body. If they continue to climb we have one more medication that will need to be given at home. So, all fingers and toes crossed that this med works. It is such a worry to me for fear of rejection, blindness, heart, lung, renal and liver functions could shut down. I had really thought that we were past the copies coming back - Unfortunately, I was wrong.
Tomorrow morning we head back to the BMT office for more labs to see how many more copies have developed since Monday morning. Hopefully, not many! Also, it is the last day of school for the girls. I have decided to treat them to Red Lobster for the graduating 5th graders and 3rd grader. I know they will enjoy this and will help to keep my mind free for a few minutes.
Wednesday, May 23, 2012
Wednesday, May 16, 2012
Day +86
So far so good! Quinn is still sleeping. Normally, he can sleep about 12 hours a day. Which at this point and time is really good for his body. Hopefully, it is hard at work on breaking those copies down.
Tomorrow morning we head out to the doctor for more labs. The thought of getting the Hickman out is probably not going to happen for a while unless they decide to go ahead and remove it due to the length of time it has been in. I may need to start an IV several a week for medications that arent oral if they make the decision to go there. Which I can do easily, and Quinn trusts me. Preferably, I would love to see the Hickman go due to the heat of summer and risk of infections. I am very nervous about having him out for a very long period of time due to the heat and humidity. However, if they switch him over to IV meds it may be a challenge getting them as they are new and come from out of the country and made specifically for the HHV6 virus. Will do whatever it takes to make sure he gets what he needs. Fortunately, for him he has a mother with a strong spirit we'll say for the sake of argument! Not sure if that is good or bad. When I get keyed up about something his eyes become huge and he sits saying nothing! Which for him is very unusual.
I still have not come to grips with the information that I received yesterday. Very hard to understand why this is not leaving his body. His counts are up and I was under the impression that once that happened his body would fight the copies. However, if his counts did drop, it will be harder for his body to fight the copies. The medicine alone will drop his counts as well. The doctor and I will have a private session tomorrow and will get more answers. He is such a caring and good doc that I have to put my faith in him.
Tomorrow morning we head out to the doctor for more labs. The thought of getting the Hickman out is probably not going to happen for a while unless they decide to go ahead and remove it due to the length of time it has been in. I may need to start an IV several a week for medications that arent oral if they make the decision to go there. Which I can do easily, and Quinn trusts me. Preferably, I would love to see the Hickman go due to the heat of summer and risk of infections. I am very nervous about having him out for a very long period of time due to the heat and humidity. However, if they switch him over to IV meds it may be a challenge getting them as they are new and come from out of the country and made specifically for the HHV6 virus. Will do whatever it takes to make sure he gets what he needs. Fortunately, for him he has a mother with a strong spirit we'll say for the sake of argument! Not sure if that is good or bad. When I get keyed up about something his eyes become huge and he sits saying nothing! Which for him is very unusual.
I still have not come to grips with the information that I received yesterday. Very hard to understand why this is not leaving his body. His counts are up and I was under the impression that once that happened his body would fight the copies. However, if his counts did drop, it will be harder for his body to fight the copies. The medicine alone will drop his counts as well. The doctor and I will have a private session tomorrow and will get more answers. He is such a caring and good doc that I have to put my faith in him.
Tuesday, May 15, 2012
Day + 85 Not so Kind!!!
I just received a call from the BMT office and spoke to the nurse. In the beginning Quinn had copies of antiobodies come up in his body of things that he had as a child that were left untreated. Bear in mind, he joined us at the age of 7 and there was no way to kinow what he had or not had. He has continually had a fever blister quite often on his upper lip mostly in the same place. One of the virus' that was detected in his body is HHV6. It can be quite serious especially to a person who has had a Bone Marrow Transplant and could cost them their life or to reject the transplant. This time there were 200 copies detected in his body which is a low number but still there, none the less and in fear of jeopardizing his transplant. If that happens ... Life will never be the same for anyone again!! I am so beside myself over this and had hoped that we were past this part. I was wrong. At this point he will be put on strong medications that can affect his Kidneys once again. Worst case scenario would be Renal Failure. We will take the meds for 2 weeks and wait again for the Engraphment Study and HHV6 tests to come back. I should know before Monday at the very latest.
Please say a prayer for little Quinn that this Monster leaves his body for good this time. At this point, I am so upset and am beside myself over this! Just those nasty thoughts of what the outcome could be for him. Having a hard time keeping it together just now. Sorry!
Good Luck to me trying to sleep again tonight!!! NOT
Please say a prayer for little Quinn that this Monster leaves his body for good this time. At this point, I am so upset and am beside myself over this! Just those nasty thoughts of what the outcome could be for him. Having a hard time keeping it together just now. Sorry!
Good Luck to me trying to sleep again tonight!!! NOT
Tuesday, May 8, 2012
Day +78 and Further Away From the "BMT Monster"
Wow! It has truly been a long time since I have posted. Many apologies!!! Exciting stuff to see Quinn at Day +78 and further away from the dangers of the BMT Monster that could have exploded on us. We were being watched very carefully by someone special!
Quinn seems to be doing very well and I hope that we are far away from the "Bone Marrow Transplant Monster". His meds have been cut back substantially and is down to 4 pills a day to 1 liquid. That is super progress. He actually would be less if his blood pressure would cooperate. Unfortunately, not until he is off of the Tacrolimus. He has eliminated the 2nd blood pressure medication which is great.
Our White Count 2 weeks ago was 6.44 and platelets at 86K. We have another appointment on Thursday and will be very anxious to see how the progress is coming along. At this point, his white count is considered "Low Normal". He is also make his own red cells and Hemaglobin for him is wonderful at 10.1. I am very proud of his progress. The latest studies show that he is 100% engraphed with donor cells. Perfect!!!!! His platelets were such poor quality that not surprised that they are all gone.
Yesterday, I called the office to see about getting his Hickman out. This week they will draw labs on him without the line. And if he does well then they will take it out the next week. Like he isnt going to do well!!! I have been sticking him for the last 4 years and starting IV's, etc - he has done fabulous and is a star patient. He may surprise the staff tell them that I will do the labs on him! He has been known to do that before. And that is what happened. I sat with the cart full of supplies many a time taking care of him in the hospital! That is trust! A mother over a trained nurse or the specialized vascular team.
Quinn's energy is slowing coming back each day. I think that Alex is keeping him busy and making sure that he takes care of himself. They are stuck together like glue. I call them the "twins". Amazing stuff how close they have become. Quinn sits and waits for her to come home on the couch everyday where he can see Alex come in and she never says hello to me before running to him. Alex has gotten to where she doesnt want to participate in any outside school activities because she wants to see Quinn. He is sleeping still about 12 hours a day still. Very good for his body to recover! Outside unfortunately, is limited. He is allowed to ride his bike and scooter for a bit. However, he tires so easily that it is hard on him. He has to rest before putting the scooter up.
We have had a few dots of blood and he quickly heals up. Nothing significant. I think he bleeds less than my girls when a tooth is pulled. I actually look forward to pulling a tooth now as opposed to planning around platelets and spending the night up with meds, IV and Factor in place. Whew! Life has changed for the good! He tells me that no one loves him like his mother and he is so glad that he had the transplant. The other day he also told me that he had never felt so good in his whole life. No Anemia will make a huge difference to a little body.
Quinn still has some difficulty eating and is very slow with food. Upset tummy still comes around several times a day. But, he is ahead of the curb and this is normal. Poor little guy is a tad under 50 lbs. now but has grown so tall. Sure, he will probably be the size of an American by any stretch of the means. I would like to see him at least 100lbs later in life.
At the moment Life is Good on the Medical Side!!!!
Quinn seems to be doing very well and I hope that we are far away from the "Bone Marrow Transplant Monster". His meds have been cut back substantially and is down to 4 pills a day to 1 liquid. That is super progress. He actually would be less if his blood pressure would cooperate. Unfortunately, not until he is off of the Tacrolimus. He has eliminated the 2nd blood pressure medication which is great.
Our White Count 2 weeks ago was 6.44 and platelets at 86K. We have another appointment on Thursday and will be very anxious to see how the progress is coming along. At this point, his white count is considered "Low Normal". He is also make his own red cells and Hemaglobin for him is wonderful at 10.1. I am very proud of his progress. The latest studies show that he is 100% engraphed with donor cells. Perfect!!!!! His platelets were such poor quality that not surprised that they are all gone.
Yesterday, I called the office to see about getting his Hickman out. This week they will draw labs on him without the line. And if he does well then they will take it out the next week. Like he isnt going to do well!!! I have been sticking him for the last 4 years and starting IV's, etc - he has done fabulous and is a star patient. He may surprise the staff tell them that I will do the labs on him! He has been known to do that before. And that is what happened. I sat with the cart full of supplies many a time taking care of him in the hospital! That is trust! A mother over a trained nurse or the specialized vascular team.
Quinn's energy is slowing coming back each day. I think that Alex is keeping him busy and making sure that he takes care of himself. They are stuck together like glue. I call them the "twins". Amazing stuff how close they have become. Quinn sits and waits for her to come home on the couch everyday where he can see Alex come in and she never says hello to me before running to him. Alex has gotten to where she doesnt want to participate in any outside school activities because she wants to see Quinn. He is sleeping still about 12 hours a day still. Very good for his body to recover! Outside unfortunately, is limited. He is allowed to ride his bike and scooter for a bit. However, he tires so easily that it is hard on him. He has to rest before putting the scooter up.
We have had a few dots of blood and he quickly heals up. Nothing significant. I think he bleeds less than my girls when a tooth is pulled. I actually look forward to pulling a tooth now as opposed to planning around platelets and spending the night up with meds, IV and Factor in place. Whew! Life has changed for the good! He tells me that no one loves him like his mother and he is so glad that he had the transplant. The other day he also told me that he had never felt so good in his whole life. No Anemia will make a huge difference to a little body.
Quinn still has some difficulty eating and is very slow with food. Upset tummy still comes around several times a day. But, he is ahead of the curb and this is normal. Poor little guy is a tad under 50 lbs. now but has grown so tall. Sure, he will probably be the size of an American by any stretch of the means. I would like to see him at least 100lbs later in life.
At the moment Life is Good on the Medical Side!!!!
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