We went to see Dr. McClain last Monday, the 9th. Tinsley went with us. Tinsley has been repeatedly sick since last October. She has had 16 sick visits related to strep and tonsillitis since October. She also had the flu in November and had a febrile seizure. We have been pretty concerned about her. She seems to get sick every time we take her anywhere or anytime she is around anyone. She came down with tonsillitis again the week before last and ran temps up to 104.9. We have previously discussed with Dr. Boecker and Dr. McClain testing Tinsley to make sure her immune system is functioning properly. Dr. Boecker ordered the tests, but requested that we talk to Dr. McClain to make sure there were not any additional tests he felt Tinsley needed. Dr. McClain requested that we bring her to see him. Tinsley loved TX Children's. She did really well with the labs. We figured she would throw a fit when they took blood for labs. She sat really still and let them poke her. It was pretty sad, she just said "Ow!" when they poked her and then cried really quietly trying to be brave. She was not quite so quiet when they checked her throat. She has been swabbed so many times for strep that she hates when they try to examine her tonsils. Dr. McClain as well as one of the oncology fellows, Dr. Zinn examined Tinsley thoroughly and both agreed that we need to have her tonsils removed as quickly as possible. They agree with Dr. Boecker that it is always easier on kids to have tonsils removed after the age of 3, but at this point, the benefit of removing them outweighs the cons. They did not get all of Tinsley's labs back until the day after her appointment. Her immune system labs all came back pretty good. There was one that is a bit out of range. Our major concern is that her white blood cell counts are low and there are a few other counts that are "off". Her ANC(absolute neutrophil count) is extremely low at 1020. "Absolute neutrophil count (ANC) is a measure of the number of neutrophil granulocytes[1] (also known as polymorphonuclear cells, PMN's, polys, granulocytes, segmented neutrophils or segs) present in the blood. Neutrophils are a type of white blood cell that fights against infection." source: Wikipedia This is a major concern as there is no reason why her ANC should be low. Ace's ANC gets very low due to the chemotherapy he is on. The average persons ANC should be between 1500 and 8000. Tinsley will have her tonsils removed this Thursday. She is going to have labs done for the next 6 weeks to establish a trend in her counts. We are hopeful that there is some kind of infection or virus hanging out in her tonsils and that is what is causing her issues. We basically won't know if that is what is causing the counts to be off until she has the surgery.
Ace is doing great. His counts are much better. His ANC is 1300, which is still low, but is high enough that he can stay on the chemo. Ace has been drinking quite a bit more water and has had quite a few more wet diapers than usual. This is a sign of diabetes insipidus in kids with LCH. Diabetes insipidus relates to hormones in the pituitary gland. Ace had to go for additional lab work on Tuesday morning in San Antonio after fasting. The fasting was not much fun for him, but thankfully the labs came back good. We are so thankful. If the labs had not come back good, he would have had to have an MRI of his brain. We felt sure that he was just drinking more due to the fact that he is walking everywhere and is so active. However, we were concerned that the 3 weeks he was off chemo due to his counts being low might have given the LCH a leg up and that it might have spread. We are thrilled that this is not the case.
We left bright and early Monday morning.
The kids did great on the trip up there.
Tinsley is not too keen on sharing "her" I-pad, or as she calls it "my pi-pad"
The cows at TX Children's were a huge hit
Tinsley would "milk the cow" and then give it a drink
Tinsley said "Look mom! Ace is a cowboy!!!"
Tinsley does not like having her tonsils checked.
We "practiced" before the doctors came in. It didn't help.
More cow checking
Ace was ready for his sister to be done looking at all of the cows
I thought we might not get Tinsley to leave.
Headed home. All went well until we were about 45 minutes from the house and then, this is what we listened to.
We were glad to be home.
Thanks for checking in on us. Please continue to keep Ace in your prayers. He is doing so well. Please keep Tinsley in your prayers this week that her surgery to remove her tonsils and adenoids will be a success and that her labs will improve quickly after having the surgery.
