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.
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.
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.
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.
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!
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.
This week I have decided to share with you those first few days of Liam's diagnosis. I remember every second of it. Its crazy, even the week leading up to his diagnosis is so clear in my memory!
On the way to the hospital I called my mom. She acted like it was no big deal, but I'm sure she was just trying to keep me calm.
At the hospital we left our things in the car, not really realizing the possibility of an overnight stay, we were just there for an ultrasound. We rode the colorful elevator to the 2nd floor, Hemby Child's Hospital. After checking in at the nursing station, we were shown to room 204. Soon after Libby and Stephanie, our nurses, came to admit Liam. Yup, wasn't prepared for that either. All patients get an IV and continuous fluids... but we were just there for an ultrasound...
Child Life came by to let us know it was Pizza Night, awesome! It was now 7pm and I hadn't ate since my lunch at 10:30.
Since I had fed Liam while we were at the pediatrician we had to wait for the ultrasound. Around 8:30 transport came to get us. I rode in the wheel chair holding Liam, Brian followed behind. Downstairs in radiology Brian and I had to hold Liam down while he had the ultrasound. Pictures tears streaming down everyone's face at this point. Liam was not happy!
A short time later, which felt like forever, the peds doctor came to tell us the ultrasound showed something enlarged, but they couldn't tell what. Transport was coming back to take us to CT.
Brian decided to go to the car to get our things while I went with Liam to CT. Our CT tech was Jody. He let me stay in the CT room with Liam, I stood right next to his head talking to him, trying to keep my baby calm. This was so scary for me, I can't imagine how scary it was for an 8 month old.
The CT tech in the control room came over the speaker " This is a chest, abdomen and pelvic scan right!" Jody replied, "No just chest and abdomen" "But its a chest, adbomen, pelvic right?" "No, Just chest and pelvic" "Can you come here please"
They aren't allowed to tell you anything, but I knew they saw something. I held back my tears and tried to stay strong for my baby.
Liam has been officially cancer free for 6 months. But not a day goes by that I don't think of November 19, 2010
I took Liam to a pediatrician checkup. It was a follow up appointment, Liam had been refusing his baby food, I had taken him in the previous week for advice, only to find out he had lost weight. I was still breastfeeding; the doctor thought I wasn't producing enough milk causing his feeding issues.
When the nurse weighed him and I saw he had lost more weight, I was devastated. I had been waking Liam up to eat at night, supplementing with formula, I thought for sure we were on the right track.
After a discussion with the doctor, and a routine exam, the doctor thought he felt something in Liam's abdomen, but wasn't sure what, he wanted an ultrasound. The doctor left to make the appointment.
By this time it was 4:30 on a Friday. The doctor came back, he had decided to just have us admitted to the hospital; suspecting it was a GI problem, he wanted to admit us to the hospital where specialists were on call rather than having to wait until Monday to see someone.
Not only was it Friday, but it was the weekend before Thanksgiving. Brian had stayed home from this appointment to do some painting around the house; we had family coming to town the next week. When I got home and told Brian to pack a bag, Liam was going to the hospital over night, he said " Do you really think that's necessary?".
Come back tomorrow to read more about the shock we were giving that night. - Posted using BlogPress from my iPad