My sweet boy caught something the other day. This is actually the first "bug" he has caught. Every other time he was sick was a result of the cancer/ chemo.
Happy to report he is back to his crazy self today.
Wednesday, November 30, 2011
Sunday, November 27, 2011
Liam's new do
Okay I know I said Liam would have to ask before getting a hair cut, and he still will need to, but he needed some grooming around his ears.
Thanksgiving morning- it was me, Liam and some scissors.
Saturday, November 26, 2011
Sounds lesson
So last week I posted that Liam was in need of a hearing aide. Well the verdict is still out of that one.
During chemo Liam received a drug, cisplatnin, that has a side effect of hearing loss.
Hearing is in the circular/spiral part of the ear. High frequency hearing is in the outer part of the spiral, where Liam has already lost hearing. The Cisplatnin may continue to work through the Cochlea (spiral) for the next 2 years. I had taken Liam for a second evaluation, because his language development; what he says and understands, was not coorelating with what his audiogram was showing. We were shocked to find out that the second opinion thought his hearing was worse.
If I haven't shared before, my degree is in Deaf Education, so I am not uneducated in this area. The second opinion sent us back to where we were previously seen for a hearing aide evaluatation. Which they do not believe Liam needs; my opinion all along.
So for now Liam will have monthly hearing evaluations. We are happy they will follow him closely,but still apprehensive. We just need to know everyone is doing what is best for him.
ANYWAY!
This past weekend Liam has made LEAPS AND BOUNDS with his langauge. He is at the age he repeats everything that he hears. It is so fun! He is also learning words for EVERYTHING, we point something out once and he know what is it and calls it by name.
Yes I am a teacher. Yes we value language. Yes we work with our child. No I do not believe all of this outweighs a possible hearing loss; helps it yes but does not cancel it out.
Saturday, November 19, 2011
1 year
Today is day 365.
We thank everyone for all their continued support. It is so nice to hear from all of you. This "fame" of Liam's has reached further than I would have guessed when I started sharing our story; from 3 of our friends running racing in support of Liam to the mom at gymboree coming up to ask "is thT Liam fudge? I'll been following his story".
This is why I ask that everyone clicks the "follow me" button at the side, we'd love to know who/how many people we are reaching.
So where are we a year later? Liam is a healthy toddler,6 months cancer free! We just found out he will need hearing aids. Yes, this was depressing to hear, but whatever we have to do.
THANK YOU ALL AGAIN!
We thank everyone for all their continued support. It is so nice to hear from all of you. This "fame" of Liam's has reached further than I would have guessed when I started sharing our story; from 3 of our friends running racing in support of Liam to the mom at gymboree coming up to ask "is thT Liam fudge? I'll been following his story".
This is why I ask that everyone clicks the "follow me" button at the side, we'd love to know who/how many people we are reaching.
So where are we a year later? Liam is a healthy toddler,6 months cancer free! We just found out he will need hearing aids. Yes, this was depressing to hear, but whatever we have to do.
THANK YOU ALL AGAIN!
Thursday, November 17, 2011
365{5}
Woman arrived around 10pm Saturday night. Mary picked her up at the airport and brought her to the hospital. Brian was laying down, I was pacing/rocking Liam. It was past time to sleep, and with the lack of sleep from the night before we were EXHAUSTED! Woman took over trying to get Liam down, then gave me a hug and her and Mary left for our house. I was so helpful having them stay at the house and take care of Jack.
Liam woke up an hour or so later. Brian got up to check on him only to find his bed covered in blood. Of course I freaked out! He had pulled out his IV. Apparently it wasn't as much blood as it looked like.
We learned quite fast over the next several days that Liam does not sleep in the crib in the hospital. He always slept in the bed with me, although nice to have him near me, it also meant I never got a restful sleep.
The next day between naps and doctors we went for several wagon rides around the children's floor.
Still my favorite picture of Liam
- Posted using BlogPress from my iPad
Liam woke up an hour or so later. Brian got up to check on him only to find his bed covered in blood. Of course I freaked out! He had pulled out his IV. Apparently it wasn't as much blood as it looked like.
We learned quite fast over the next several days that Liam does not sleep in the crib in the hospital. He always slept in the bed with me, although nice to have him near me, it also meant I never got a restful sleep.
The next day between naps and doctors we went for several wagon rides around the children's floor.
Still my favorite picture of Liam
- Posted using BlogPress from my iPad
Tuesday, November 15, 2011
Day365{4}
Saturday November 20, 2011
As my mom always promised, she was only a phone call away. Mary too. I called my mom in the EARLY morning hours asking if she was on her way yet, but the earliest flight she could get was later that afternoon.
Dr. Bolen came it to meet us around 7:30 that morning. It was oddly comforting to have a doctor come in so early to meet us. She had looked at his scans, based on those and his age she told us what she believed Liam had: hepatoblastoma. He would need to have a biopsy to confirm, but she was certain.
Dr. Bolen also went over Liam's treatment options.
1. Surgery to remove the tumor
2. Chemo and then surgery to remove to tumor
We would have to wait til the surgeon came by later to hear what our options was....
We were also told what drugs his chemotherapy would consist of and the side effects... Now I can honestly say I don't think I have ever shared this, but I remember being told o e of the side effects was hearing loss. My heart sank- why? my degree is in deaf education, I never thought a hearing loss was a big deal...until it hit home.
I laid in bed with Liam that day crying.
Later when the surgeon came around we were told surgery was not an option. Dr. Cosper would do the biopsy and insert a port for Liam to receive chemo, but the tumor was too close to the blood supply to remove the tumor.
I could not think straight that day, I was so emotional- Tricia I apologize for this next part- but I received a message that day asking my schedule for the next month so friends could play a playdate. My reply was "Liam has cancer I can't plan for anything.". Definitely not the best way to break the news to anyone, Sorry!
As my mom always promised, she was only a phone call away. Mary too. I called my mom in the EARLY morning hours asking if she was on her way yet, but the earliest flight she could get was later that afternoon.
Dr. Bolen came it to meet us around 7:30 that morning. It was oddly comforting to have a doctor come in so early to meet us. She had looked at his scans, based on those and his age she told us what she believed Liam had: hepatoblastoma. He would need to have a biopsy to confirm, but she was certain.
Dr. Bolen also went over Liam's treatment options.
1. Surgery to remove the tumor
2. Chemo and then surgery to remove to tumor
We would have to wait til the surgeon came by later to hear what our options was....
We were also told what drugs his chemotherapy would consist of and the side effects... Now I can honestly say I don't think I have ever shared this, but I remember being told o e of the side effects was hearing loss. My heart sank- why? my degree is in deaf education, I never thought a hearing loss was a big deal...until it hit home.
I laid in bed with Liam that day crying.
Later when the surgeon came around we were told surgery was not an option. Dr. Cosper would do the biopsy and insert a port for Liam to receive chemo, but the tumor was too close to the blood supply to remove the tumor.
I could not think straight that day, I was so emotional- Tricia I apologize for this next part- but I received a message that day asking my schedule for the next month so friends could play a playdate. My reply was "Liam has cancer I can't plan for anything.". Definitely not the best way to break the news to anyone, Sorry!
Monday, November 14, 2011
Day365{3}
About 11:30 that night the doctor came it. She had the results of the CT scan.
I was sitting at the end of the hospital bed, Liam on my lap. Brian was standing to the left of us. The doctor sat on the "couch" across from us.
"The CT scan revealed a tumor in William's liver, I have sent the scans to the oncologist. She will review them tonight and be here to see you in the morning, There is nothing more I can do for you tonight, I have handed your case over to Dr. Bolen. She usually rounds early, between 8 and 9".
I sat there, hugging Liam, taking quick breaths to hold back the tears. After the doctor left was the first time I ever saw Brian cry. We were terrified.
Brian asked me not to say anything until after we met the doctor in the morning, but I told him I had to call Woman(my mom). After I spoke with woman she began looking for the next flight to Charlotte.
That night I did not sleep at all. Sometime in the middle of the night I called a good friend who was an oncology nurse. She worked nights, so I hoped she was at work so I would wake her. But she was on vacation that week- she talked to me for a while, cried with me and made sure to call me all week.
About 6 am, still without any sleep, I decided Liam needed to be in everyone's thoughts and prayers. I texted a friend I ran with, as a previous Team in Training Participant and coach I knew they were about to meet and say a mission moment, a story about someone with cancer that gives purpose to why they are out pushing and running. I texted my friend and told her I wasn't ready to talk about it, but we were in the hospital with Liam and he had cancer.
From that moment I knew it was my job to keep Liam in people's thoughts and prayers; that is what I could do to help him.
I was sitting at the end of the hospital bed, Liam on my lap. Brian was standing to the left of us. The doctor sat on the "couch" across from us.
"The CT scan revealed a tumor in William's liver, I have sent the scans to the oncologist. She will review them tonight and be here to see you in the morning, There is nothing more I can do for you tonight, I have handed your case over to Dr. Bolen. She usually rounds early, between 8 and 9".
I sat there, hugging Liam, taking quick breaths to hold back the tears. After the doctor left was the first time I ever saw Brian cry. We were terrified.
Brian asked me not to say anything until after we met the doctor in the morning, but I told him I had to call Woman(my mom). After I spoke with woman she began looking for the next flight to Charlotte.
That night I did not sleep at all. Sometime in the middle of the night I called a good friend who was an oncology nurse. She worked nights, so I hoped she was at work so I would wake her. But she was on vacation that week- she talked to me for a while, cried with me and made sure to call me all week.
About 6 am, still without any sleep, I decided Liam needed to be in everyone's thoughts and prayers. I texted a friend I ran with, as a previous Team in Training Participant and coach I knew they were about to meet and say a mission moment, a story about someone with cancer that gives purpose to why they are out pushing and running. I texted my friend and told her I wasn't ready to talk about it, but we were in the hospital with Liam and he had cancer.
From that moment I knew it was my job to keep Liam in people's thoughts and prayers; that is what I could do to help him.
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