Tuesday, January 20. 2009
My little baby is 6!!!
So…Taylor’s last clinic visit on the 8th went well. Her counts are not still so high like they had been the last several visits. So that is good. Her Neutrophil Count during Maintenance should be between 500 and 1500. Her’s was 600! A little on the lower side…but I like that better then 5000 or more. Sammy was there for her monthly visit as well so Taylor was very excited to have someone to play with. Taylor was also a little excited because it was Sammy’s time for a Spinal Tap and not Taylor’s. The month before it was the other way around. Now onto the Neuro- talk.
Dr. Hugge and Taylor’s Neurologist Dr. Gellar decided to start her on Keppra to deal with the abnormal spiking on the EEG. Dr. Gellar saw what he would call pre-epilectic activity. They believe what Taylor is having is what they call Partial Complex Seizures in which Keppra is one of the top medications for that particular form of seizures. They are hoping as with the rest of this neurological stuff…it will dissipate after she is off her chemo and then she will be able to go off the Keppra. They are hoping that she will not need to be on it for her life. But as with all the rest of this neuro stuff….no body really knows! Oh the joys of having a side effect that there is very minimal information published!
Taylor’s oral Methotrexate was held again last week and I anticipate probably again this week. We had discussed possibly putting her back on it this Thursday, but since then. Dr. Hugge has been in touch with another doctor who was involved in some of the clinical trials even back in the late 80’d early 90’s. Apparently when he had told her of the changes to the EEG and the MRI…she said that Taylor should not be put back on the Methotrexate indefinitely. That whether it has been published or not, in her experience, ORAL Methotrexate can have that affect just as the Intrathecal (in spinal fluid) or the IV Methotrexate. So….in reality…there still is no long-term plan at this point. Just playing it week by week. Taylor also had a minor episode at school last Friday…so I think that will also play into the decision whether or not she will go back on the Oral Methotrexate this week.
Friday the 16th was Taylor’s 6th birthday! Wow….that just seems so old! 5 just still felt little…6 just seems so big and official. Don’t get me wrong…Taylor’s youth and innocence was taken when she was diagnosed. All of these little patients are forced to grow up and mature so quickly…it is as if they have an old soul…But to be 6 just seems so BIG! I just wanted to hold her in my arms all day and just snuggle! But I couldn’t. She bucked up and went to school, despite her legs feeling a little silly. She did end up coming home before lunch after her little episode. She spiked a fever around 2:30 that afternoon and we ended up in the Clinic for the remainder of the afternoon. Her ANC was 900, so they gave her some IV antibiotics and fluid and sent us home. YEAH! Saturday, she had one of her dearest friends over for her first sleepover! That was AWESOME! That night Daddy was a little emotional. He was just so desperate for Taylor and her friend to have a blast. Everyone keeps asking how she’s (Taylor) and us are doing. I respond… Taylor is doing fine…because she really is. We have not told her any of this new stuff because it is too far beyond her comprehension. For a little girl, she is so stressed out as it is…she doesn’t need something she can’t even understand to stress her out even more. By now she has had these episodes so much…it doesn’t even bother her. Chris and I, on the other hand are a little bit of wrecks. Not all the time…but we definitely have our moments.
Well. I am already 45 minutes past the time I wanted to be in bed…so I am going to stop for now. Thanks for everything! All of you guys out there…ROCK!
Thank you for all of your thoughts, prayers, and Twinkles!
Lindsay
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Taylor’s oral Methotrexate was held again last week and I anticipate probably again this week. We had discussed possibly putting her back on it this Thursday, but since then. Dr. Hugge has been in touch with another doctor who was involved in some of the clinical trials even back in the late 80’d early 90’s. Apparently when he had told her of the changes to the EEG and the MRI…she said that Taylor should not be put back on the Methotrexate indefinitely. That whether it has been published or not, in her experience, ORAL Methotrexate can have that affect just as the Intrathecal (in spinal fluid) or the IV Methotrexate. So….in reality…there still is no long-term plan at this point. Just playing it week by week. Taylor also had a minor episode at school last Friday…so I think that will also play into the decision whether or not she will go back on the Oral Methotrexate this week.
Friday the 16th was Taylor’s 6th birthday! Wow….that just seems so old! 5 just still felt little…6 just seems so big and official. Don’t get me wrong…Taylor’s youth and innocence was taken when she was diagnosed. All of these little patients are forced to grow up and mature so quickly…it is as if they have an old soul…But to be 6 just seems so BIG! I just wanted to hold her in my arms all day and just snuggle! But I couldn’t. She bucked up and went to school, despite her legs feeling a little silly. She did end up coming home before lunch after her little episode. She spiked a fever around 2:30 that afternoon and we ended up in the Clinic for the remainder of the afternoon. Her ANC was 900, so they gave her some IV antibiotics and fluid and sent us home. YEAH! Saturday, she had one of her dearest friends over for her first sleepover! That was AWESOME! That night Daddy was a little emotional. He was just so desperate for Taylor and her friend to have a blast. Everyone keeps asking how she’s (Taylor) and us are doing. I respond… Taylor is doing fine…because she really is. We have not told her any of this new stuff because it is too far beyond her comprehension. For a little girl, she is so stressed out as it is…she doesn’t need something she can’t even understand to stress her out even more. By now she has had these episodes so much…it doesn’t even bother her. Chris and I, on the other hand are a little bit of wrecks. Not all the time…but we definitely have our moments.
Well. I am already 45 minutes past the time I wanted to be in bed…so I am going to stop for now. Thanks for everything! All of you guys out there…ROCK!
Thank you for all of your thoughts, prayers, and Twinkles!
LindsayHave updates to Bella's Blog sent right to your in-box ... CLICK HERE!
Mom: it must be hard for you. You poor soul
Greatest empathy to both of you
Mia