Where, oh where to begin. So much has happened since my last post. We have a new addition to our family. Jackson Levi Asher arrived April 5th at 2:39am at 7lb 15oz and 21in. He was a week early and came within 3 hours of my first contraction. Needless to say, he was in a hurry to get here!
Our first 5 weeks. with him have been a challenge. He's definitely a different baby than Gabrielle was. She slept 4-5 hours the day we brought her home from the hospital while he generally sleeps about 20min unless you are holding him and even then it lasts and hour, maybe. He is also a hungry, growing boy who likes to eat about every 2 hours or less. We struggled with severe crying and screaming, as well, due to reflux and who knows what else. The good news is that things seem to be settling down. Even within the last 2 days he has seemed like a different baby. I'm hoping that he just had some trouble adjusting to life outside the womb and is now becoming my sweet, calm boy. We'll see how things play out. Gabrielle absolutely loves her baby brother and is very helpful and sweet with him. It's an amazing thing to watch the two of them together and listen to her say she loves him. Melts my heart. :)
Now, on to Gabs. We have been taking her to Grand Rapids monthly for oncology appointments and testing her urine for HVA and VMA at each appointment. Her VMA has stayed mostly steady and within the normal range for this chemical. Her HVA, on the other hand, has been slowly, yet steadily increasing. Normal range for this is 0-12 and in the last 4 appointments she has gone from 15 to 19 to 21 to 24. Her doctor believes that this may indicate some neuroblastoma still present. Her first MRI since being in the hospital is this month on the 24th. This may or may not give us much information. After the extensive surgeries she has undergone, she will have a significant amount of scar tissue and it may be difficult to differentiate between that and any small tumor. We will be planning a 24 hour urine catheter for her soon (most likely a hospital stay because of her age) and look for any other chemicals that could indicate neuroblastoma. We aren't really sure what this all means in terms of treatment yet.
We started her on Accutane last month and although we initially were unsure if we were going to continue this medication, in light of her recent numbers, it looks like we will continue to have her take it for the full 6 month cycle. It is twice a day for 2 weeks then we take a 2 week break and then repeat. If everything else seems mostly normal and only her HVA is abnormal, we may just continue to wait and watch while treating with Accutane. Accutane, in case I haven't explained it previously, matures immature nerve cells. This is what neuroblastoma is so the accutane should help mature anything that may have been left behind. She does need monthly blood work as well since accutane is a pretty harsh drug.
She finished with her brace at the very beginning of May and we visited the neurosurgeon yesterday and were told that she looks great. She seems to have full function of her leg and hip and you can't even tell that she lost any nerves. We assume that because the tumor had already damaged at least one of the nerves that were lost, her body may already have been compensating for not being able to use that nerve. The neurosurgeon seemed pleasantly surprised that there is no noticable difference in her gait or movement. We are so thankful for this.
Hopefully we will no more at the end of this month. In the meantime, we are trying to stay positive. She is very happy and energetic and our oncologist seems encouraged by this fact. We are really looking forward to this summer with both her and Jackson and are realizing how much we need to take advantage of the warm weather and how well she seems to feel right now. We can no longer take for granted having healthy and happy children.
Thank you for everyone's continued thoughts and prayers. Looking at her now, I sometimes forget that we may still have challenges and hurdles to overcome in the future, near or far. Today's test results were a bit of a rude awakening for me. Much love to all, we are definitely feeling all of the love sent our way from friends, family and friends OF friends and family :)
Our first 5 weeks. with him have been a challenge. He's definitely a different baby than Gabrielle was. She slept 4-5 hours the day we brought her home from the hospital while he generally sleeps about 20min unless you are holding him and even then it lasts and hour, maybe. He is also a hungry, growing boy who likes to eat about every 2 hours or less. We struggled with severe crying and screaming, as well, due to reflux and who knows what else. The good news is that things seem to be settling down. Even within the last 2 days he has seemed like a different baby. I'm hoping that he just had some trouble adjusting to life outside the womb and is now becoming my sweet, calm boy. We'll see how things play out. Gabrielle absolutely loves her baby brother and is very helpful and sweet with him. It's an amazing thing to watch the two of them together and listen to her say she loves him. Melts my heart. :)
Now, on to Gabs. We have been taking her to Grand Rapids monthly for oncology appointments and testing her urine for HVA and VMA at each appointment. Her VMA has stayed mostly steady and within the normal range for this chemical. Her HVA, on the other hand, has been slowly, yet steadily increasing. Normal range for this is 0-12 and in the last 4 appointments she has gone from 15 to 19 to 21 to 24. Her doctor believes that this may indicate some neuroblastoma still present. Her first MRI since being in the hospital is this month on the 24th. This may or may not give us much information. After the extensive surgeries she has undergone, she will have a significant amount of scar tissue and it may be difficult to differentiate between that and any small tumor. We will be planning a 24 hour urine catheter for her soon (most likely a hospital stay because of her age) and look for any other chemicals that could indicate neuroblastoma. We aren't really sure what this all means in terms of treatment yet.
We started her on Accutane last month and although we initially were unsure if we were going to continue this medication, in light of her recent numbers, it looks like we will continue to have her take it for the full 6 month cycle. It is twice a day for 2 weeks then we take a 2 week break and then repeat. If everything else seems mostly normal and only her HVA is abnormal, we may just continue to wait and watch while treating with Accutane. Accutane, in case I haven't explained it previously, matures immature nerve cells. This is what neuroblastoma is so the accutane should help mature anything that may have been left behind. She does need monthly blood work as well since accutane is a pretty harsh drug.
She finished with her brace at the very beginning of May and we visited the neurosurgeon yesterday and were told that she looks great. She seems to have full function of her leg and hip and you can't even tell that she lost any nerves. We assume that because the tumor had already damaged at least one of the nerves that were lost, her body may already have been compensating for not being able to use that nerve. The neurosurgeon seemed pleasantly surprised that there is no noticable difference in her gait or movement. We are so thankful for this.
Hopefully we will no more at the end of this month. In the meantime, we are trying to stay positive. She is very happy and energetic and our oncologist seems encouraged by this fact. We are really looking forward to this summer with both her and Jackson and are realizing how much we need to take advantage of the warm weather and how well she seems to feel right now. We can no longer take for granted having healthy and happy children.
Thank you for everyone's continued thoughts and prayers. Looking at her now, I sometimes forget that we may still have challenges and hurdles to overcome in the future, near or far. Today's test results were a bit of a rude awakening for me. Much love to all, we are definitely feeling all of the love sent our way from friends, family and friends OF friends and family :)