Numbers

A few times a week we have to take Liam to the doctors for blood work. The nurse draws blood and runs his "counts". When the doctor comes in they give us all these numbers. And at first thats all they are; numbers. Here are some of the numbers of hepatoblastoma, cancer and Liam.

1%- hepatoblastoma cases are only 1% of childhood cancers

2- cycles of chemo Liam has had so far

3- the number of blood transfusions Liam has had

4- the number of times Liam has been admitted to the hospital

5- Liam is 5 pounds under weight

6- number of ultrasounds Liam has had

8- the hemogloblin level (red blood cells) the doctors want to keep him above

39- the number of days we have known of Liam's pain

50- the number of hepatoblastoma cases in the US each year

750- ANC (white blood count) level needs to be above to begin chemo

I can keep going... but I won't. In our new world of numbers. the important ones are the countless ones. The number of prayers, thoughts and donations we have received.

After his appointment today we know Liam's hemoglobin level is 7.9, under the magic number 8. This means he may need another blood transfusion. Because he was in such a great mood these last few days, the doctors are going to let us wait til his chemo treatment on Thursday to see what his level is then.

He has been in the best mood the last few days. I appear to have my baby back. I am enjoying every minute with him while he is feeling good. He has loved playing with all his new toys.

Merry Christmas

Today was a Very Merry Christmas indeed. Liam was feeling great today. We made a whole day out of opening presents. Liam really got the hang of it. He would grab for the paper, tear off a piece and throw it to the side. He was so CUTE! When he got to the box he wanted his toy. We took time after each gift to get it out and let him play with it for a while. Gift opening went on from 9am-5pm.

And as a special Christmas gift to Mommy; Liam has began getting onto his hands and knees again, and attempted to pull himself up on the boxes. This gives me so much joy and hope that he will be mobile again soon and back to his happy, cheerful self.

Chemo is exhausting

Liam was able to begin his second cycle of chemo on Wednesday. He has been in good spirits, even more active in the past few days.

I was told I was no longer allowed to write anything sad without warning. THIS IS GOING TO BE HAPPY. We are back at home now. Aunt Mary is here to celebrate Liam's first Christmas.

Things I love...

I love Liam's smile.

I love Liam's laugh.

I love his kisses.

I love his hugs.

I love watching Liam clap.

I love watching Liam wave.

I love watching him play.

I love watching him sleep.

And I love my niece for telling Santa her Christmas wish was for Liam to get better. I know Santa will be saying a prayer as he flys over our home tonight.

One Month

It has been one month since our world stopped turning. One month since Liam's last attempt to crawl. One month since a peaceful nights sleep. One month...



I cry.
I cry for Liam's lost childhood.

I cry for the pain he feels.

I cry because I cannot comfort him.

I cry because I cannot fix this.

I cry because I don't have the answers to why a child should ever have to have this fight.

I cry for the unlikelihood that this has happened to my baby.

I cry at the word cancer.

I cry because our lives will never be normal again.

I cry because Brian and I have miss out on some of the happy experiences of the first child.

I cry for the generousity of others. They pray, they donate... their lives go on.




I had to call gymboree today to see how long I could suspend Liam's membership for. Pure Wonderment. The gym was so understanding of the situation. They have offered us the gym to use while they are closed so that Liam can get out of the house and play. They understand that this will mean that extra cleaning would have to be done on their part, but would love to do that for Liam.

A Light at the End of the Tunnel...?

We've been back at the hospital since Wednesday. Liam's weight took a hit. He is getting nutrition through his port now. We are hoping to go home on Sunday. When we get home a homecare nurse will come to the house and set us up so he can continue nutrition at home.

The next cycle of chemo has also been postponed. His blood counts are too low to start on Monday. Our goal is to start the next Monday; December 27th. It works out nicely that Dawn's mom will be visiting at that time to help.

But only in pediatrics is a trip to the doctors or hospital like checking into a nice hotel. They show you to your room, ask if you need anything. They bring you food, drinks and entertainment. Last night a group of ukulele players came to perform Christmas carols for the patients. Liam really enjoyed the music.

We also received some great news today. His tumor is shrinking. Last night they did an ultrasound of the tumor, and although it is difficult to compare a CT scan to an ultrasound, the measurements show it is shrinking, and even dying in the middle of the tumor.

Thank you for all the well wishes and prayers; they are certainly working.

Without a struggle, there can be no progress

That quote accurately describes how these past few days have been. Liam has been uncomfortable and fussy. We are continuing to struggle with feeding him. He is getting between 10-14 oz of breastmilk/formula a day. He should be getting 24-32 oz. So he is not even close. But he sure does love his biter biscuits.

After being asked how Liam is doing, the next question we are asked is...How is mom and dad doing?

For dad, Life goes on. Brian continues to go to work, unless Liam has an appointment. When he gets home from work he plays with Jack. Brian has continued to run; finishing the Thunder Road Marathon with Ben last weekend. He also makes time to play with Liam and give him his bath before bed.

For Mom- Dawn has taken a leave of absence from work to stay home with Liam during this time. She tries to keep Liam happy and comfortable. For herself while Liam naps she has began making use of the sewing machine. Baby legs anyone?

Sewing has been good for keeping Dawn busy during naps. Keeps her from thinking about things too much. The baby legs have been great for the frequent diaper changes Liam requires. She has made some for friends babies. Just let her know if you want some.

Special recognition needs to be given to Brian's uncle Norman Fudge. Over this past weekend he gave a very generous donation towards Liam's fund to help with his expenses. We certainly did not expect it and we are truly thankful. Thank you Uncle Norman!!

A Special Thank You

We have began to receive so many donations to assist with Liam's medical bills; many from people we have never met. We are so thankful for everyone.

Thank you for the generous donations;The Swansons, The Banks Family, The Ward Family, N. Giaimo, T. Kim, S. Rawson, K. Warren, A. Coberly, B. Lehotzky, N. Debinder, The Baldwins, A. Helfman, A. Gibson, and K. Lefler.

Thank you so much to A. Collins and K. Pierce, who continue to spread the word on facebook.

Thank you L. Armitage, who has began setting up multiple fundraisers for Liam. She has arranged for her friend Joan who owns http://www.bitsycreations.com/ to donate a portion of her profits to Liam's fund. When placing your order through this website put LIAM in the coupon code area/notes to seller.
L. Armitage will also be conducting a fundraiser of her own after the holidays.


Below is a picture of Liam while waiting at the clinic for his blood transfusion. His Hemoglobin level dipped a little bit so the doctor wanted to help it out a little.

Thank you so much to all our friends and family for your continued support.

A Rough Day...

Well it wasn't Liam's best day at all. It all started at about 8am when he woke up. We tried to feed him his bottle...and it did not go well. He threw up everything we tried to feed him and probably a little bit of what was already in his stomach. Really the most discouraging part of the day and actually this past first week+ has been his appetite. He's already small to begin with and the fact that he isn't eating very much doesn't help. He's only been eating about 2o oz. or so per day but today we could barely get 10 oz. in him. We did discover something called a Biter Biscuit which he seemed to like. He ate one and was working on a second one until Jack stole it. You can imagine how mad we were at Jack. Besides his issues with food and the occasional nausea he seems to be doing well and in good spirits. He has not started losing his hair yet(which we were told should happen right about now). Brian is going to shave his hair off in support when he does. Tomorrow we go back to the doctors office in the morning to get some more bloodwork done...another weight check...and hopefully get a solution figured out for his eating woes. Also when he was in the clinic yesterday for his push of Vincristine he had some bloodwork done and his red/white blood counts were good which is very positive. I think that's all for now.....another update this weekend as Ben and Kella visit from Cali.

How Much?

I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I have brought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me.
*Dr. Seuss

First forgive me because Brian will not be happy with this topic, but I feel some perspective is needed. When I was first told to put the donate button on this blog, I felt it was a bit tacky. I have spent quite some time in the past fundraising for the Leukemia and Lymphoma Society and for Girls on the Run. But asking for money for my needs, or more specifically the needs of my family- no.

Refering specifically for the donated money I raised for LLS (Team in Training), money not only goes to funding cancer research but to families to help with their bills too. Assuming everyone knows cancer is expensive; What does expensive mean?

We have known of Liam's diagnosis for 2 1/2 weeks now. His bills already outweigh my yearly salary. I said some perspective was needed on topic. Perspective cannot be given at this point; I cannot even begin to imagine what the bills will add up to in his next 6+ months of treatment.

If you lend someone money, and never see that person again, it was probably worth it.

Chemo Day 5 & 6

Liam woke up in good spirits this morning. We decided it was a good time to get his pictures for his Christmas card. Here is your sneak peek...

He has been "talking up a storm" the last few days and eating has been better in the early part of the day.

Last night, about 3 am, we got our first vomit experience. We never it was going to be a side effect of the chemo; we just didn't expect it so soon. Liam had woken up and I fed him. He had just finished the bottle when I heard a gurling noise. There was no time to react before I was covered in milk. I yelled for Brian to wake up. Liam just looked at me like "whats the big deal". He was fine and has been sleeping or playing happily ever since. But I will definatly be giving him his antinausea medicine for a few days.

Chemo Day 4

Liam is returning to his cheerful self. It has taken about a week and a half after his surgery but we are relieved to see this.



What is not going well is eating. Still only taking in a few ounces of milk each day. Liam did enjoy some puffs today. He loves his finger foods. My only complaint about them is it takes a whole bowl full to get 25 calories. He obviously is not going to eat a full serving and is getting very few calories from them.
Earlier this week I took Liam to visit Santa Claus. We wanted to get this done before it was too risky to take him out of the house. Liam was less than thrilled. We managed to get a picture of him not crying. And wouldn't you know it; after the pictures had been taken and mom was reviewing them, Liam sat on Santa's lap playing with his beard (wish I had gotten a photo of that).

Chemo Day 3

“The most important of life's battles is the one we fight daily in the silent chambers of the soul.”
*David McKay


Have I told you lately how much we truly appreciate everyone's thoughts and prayers. I cannot count how many prayer chains Liam is on. We are getting messages from people we have never met telling us they are praying for Liam. Oh the wonders of Facebook.


We really do have the best family and friends. You have all done so much for us already. From setting up a fund to help with expenses (see button on side) to arranging meals for us during this time. The word "fundraiser" has also been tossed around. I really cannot express how much all of this is appreciated.



Liam had a rough night last night. Up every 1-2 hours. He just wanted to be held. As comfy as the glider in his room is, I don't enjoy sleeping sitting up. But he can have whatever he wants right now. He has had very little to eat since we came home yesterday, maybe 2-3 ounces. The doctor is not concerned because the chemo can suppress his appetite; we just need to make sure he stays well hydrated.

Liam with Max the Chemo Monkey during our first hospital stay.

LOVES wagon rides around the hospital. Can you guess what he is getting for Christmas?

Chemo Day 2

Today we completed our hospital stay for the first cycle. Liam had to be on IV fluid following his Cisplatin treatment. He had 3 other chemo meds today also. So far he has reacted well; no nausea.

He will go to clinic for more treatments the next 2 Wednesdays to complete this cycle. He will also need to go to clinic several times each cycle to have blood drawn. By checking his blood count the doctors will see how well he is recovering from the treatments and when he is at risk for getting sick. This will help the doctors to determine when he will be strong enough to begin the next cycle.

Chemo Day 1

Well his long awaited fight officially begins today. He started receiving his chemo IV around 3pm today. One thing that has been encouraging is that he seems to be eating better today which has not been the norm as of late. Here he is playing with his toys while halfway thru his session of Cisplatin.

Feed your faith and your fears will starve to death

I know I started this blog several months ago as a way for family to watch Liam grow. I also KNOW I haven't done the best job at that.

Today this blog will begin to serve a new purpose; keeping everyone updated as Liam battles cancer. My baby has a fight and a battle ahead of him. What he is going through is nor fair and I wish I could make it all go away. But what I do know it that he is going to be okay. I have a strong little boy!

How did we figure out Liam has cancer?

About 6 weeks ago Liam began to refuse baby food. I knew this was 'normal' behavior and I should just keep trying; he would eat when he was ready. For a few weeks I just kept trying to feed him his fruits and veggies. Then he began waking up several times at night again. OH THE HORROR! We had just began sleeping through the night; this cannot happen.

I called the doctor for advice on getting Liam to eat. The doctor wasn't concerned he hadn't been eating foods; all the nutrition Liam needed was coming from the breastmilk. But he wanted me to bring Liam in for a weight check just to make sure Liam was still gaining weight. He wasn't; he had lost 5 ounces since his 6 month appointment.

After a conversation about how much milk Liam had been getting and a routine exam, the doctor wanted me to supplement feedings with formula. The doctor suspected Liam had refused food because he was too hungry and wasn't getting enough milk.

After a week of breastmilk/formula combo I was feeling good about Liam's calorie intake; I was sure we would see a weight gain. Back at the doctor's for another weight check, the nurse put Liam on scale. He had lost more weight.

After another routine exam the doctor found the top part of Liam's abdomen to be hard. He could tell something was enlarged, but could not tell what. He wanted us to go to the hospital for an ultrasound. It being Friday evening, the doctor admitted us to the hospital incase Liam needed to see a specialist we wouldn't have to wait til Monday.

At the hospital we had an ultrasound; it showed an enlarged liver. The doctor ordered a CT scan to get a better look. The CT scan showed there was a large tumor in his liver.

After meeting with the oncologist and surgeon it was determined the tumor could not savely be removed. Liam will need chemo to shrink the tumor because it can be removed. He will have 2 cycles of chemo then another CT scan to see how the tumor has responded. If it responds well he will have 2 more cycles of chemo then surgery to remove the tumor. If the tumor does not respond as expected Liam will have to go on the transplant list.

We appreciate all the thoughts and prayers. We are very fortunate to have such wonderful friends and family.

Has anyone seen my blog?

Has anyone seen my blog? I seemed to have misplaced it for a while. Since Brian made me go back to work, my time has been limited.

The Boog is 6 months old now. He is getting so big! He is very active. He lunges and grabs for everything. He especially loves paper, the computer, remote and my waterbottle.

He can get up on his hands and knees, he crawls in a circle, but gets places by rolling to them. We have been trying lots of fruits and vegetables. Liam is not a huge fan of the veggies, but we will keep trying. But most excitingly he has began sleeping through the night. Not everynight, but it has happened. The first night he did it was the best night of my life!

5 months!

Liam turned 5 months this week. Where has the time gone?

When I sat him on the floor to take his 5 month picture, Brian asked why I didn't just sit him in the chair. I want to show everyone what a great job he is doing sitting up. He does so many other things to remind me he is growing. The other night during bath time, he grabed the side of the tub and pulled himself up to standing. I AM NOT READY FOR THAT! Boy needs to slow down.

He started rolling from him belly to his back at 3 months. Recently he has started rolling from his back to his belly. When he does this, he realizes he doesn't like to be on his belly and immediately begins screaming. Apparently he has forgotten how to roll himself back over. On the rare occation we can keep him happy on his belly, he has began moving. No, he is not crawling yet. But he is dangerously close. He reaches forward and pulls with his arms, he also pushes off with his legs. The only thing keeping my sanity together right now is he has not figured out how to coordinate the two yet.

Just for fun, here is a picture of tummy time at one month.

Feet... The best toy I will never have to buy!

BOOBS!

In honor of World Breastfeeding Week I thought I would write about the dairy farm. Yes, my boobs are literally their own dairy farm. Apart from being on demand 24 hours a day, it has became a joke between Brian and I; when I am pumping, Bessie is in business.

I am very fortunate to have the ability for feed my child, but there is no end to my supply. I have been freezing every last ounce that comes out in preparation for Liam to begin daycare.


Today I heard an inspiring story at Liam's playgroup. The story was about a baby who was born addicted to crack and was adopted. This baby was only meeting developmental milestones because of the donated breastmilk he was receiving. If I can produce enough to keep Liam on breastmilk while in daycare, I think I am going to look into donating the excess

I'm going to buy you a pony... or whatever a 5 month old might want.

Why exactly would I want to buy my baby a pony? Because he slept 8 hours last night! He didn't even wake up for his pacifier. Isn't he so cute when he is sleeping?

And he wakes up so happy now.

And Mommy is happy now too! Please do it some more!

When Dad's away Mommy and Liam will play

I have been working really hard to sit up by myself. Here I am sitting up for just over a minute. But of course I fell when Mommy took the picture.
















Mommy has lots of different balls she pulls out for me to play with. I think they taste delicious!















Mommy gives me so many things to play with everyday! I am getting good at staying entertained while Mommy and Daddy eat now that I can sit at the table with them.















I love my exersaucer. Thank you Gamma!















It's been a hard day of play. I think I am going to take a little rest.

It's Pottery Barn Baby. You break it, you buy it!

Liam has slept 6-7 hours at night before, but not recently. And when he does it usually involves waking up a few times for his pacifier. Last night I had my first "I have to check on the baby, he hasn't woke up" freak out.

I tip-toed across the hall to the nursery, slowly opened the door and smelled the room. WHY did I smell it? Who knows! I should have been putting on my own oder controlling shield because Liam has a superhero sense of smell. When I walk into the room his nose sends a message to his brain "booby milk, must eat".

So after tip-toeing my way over to the crib and staring at him for an appropriate length of time, I determined he was breathing. RETREAT RETREAT I must get out without waking the beast. I backpedaled to my bed, where I lay listening to the monitor, paranoid of when he will wake up. My anxiety continued to grow with every movement I could now hear.

Affirmative... I had woke the beast!

A Blog?

Brian asked me the other day why we didn't have a blog. In my head I thought "because I can't keep up with that." Realizing this may be the easiest way to keep everyone updated on our lives and impending parenthood, I decided to give it a try.

Baby Fudge will be making his arrival in about 8 weeks. We are definately getting excited. We had another ultrasound on Friday. Baby is healthy, and looks like a baby now, not an alien.

I still tend to call him Baby Fudge, but he does have a name. We decided to name him William Alexander. William after Brian's grandfather, we will call him Liam. Alexander is after my parents.

The nursery is almost finished. All the furniture has been in and put together for a few months now. We just need the mural and we will be ready.


For now, here are some pictures...



Me at 32 weeks

Our 32 week Ultrasound photo