Monday, January 31, 2011

Bang-ups and Hang-ups

I'm sorry to say so but, sadly it's true that bang-ups and hang-ups can happen to you. ~ Dr. Seuss

I guess I spoke too soon.

The culture take from Liam's abscess grew something; staph. MRSA to be specific.

After finding out he was going to be okay, my first thought was eww gross. I had an uneducated perception of MRSA being dirty. He has an infection on his skin. I try very hard to keep that skin clean; how did he catch MRSA? He only goes to the doctor and back home; how did he catch MRSA?

The doctor calmed this irrational mama down. He let me know staph is everywhere and with Liam's compromised immune system it was easy for him at catch.

Liam is on 2 different types of antibiotics now. The lab is testing the culture to see what antibiotics will work best with this infection. We should have an answer tomorrow. When we go home depends on what antibiotic he will be taking. We also have to wait for his ANC level to be above 200 before we can take Liam home. He was given medicine today to help raise his ANC.

I'll update with pictures soon.
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Sunday, January 30, 2011

Where Everybody Knows Your Name

As we stepped off the elevator yesterday all the nurses started saying hello as we walked down the hall; the Cheers theme song played over and over in my head. But in this case we had to go where everybody knew our names, and they are never glad we came.


This was not a planned trip to the hospital. Liam had spots on his belly, the doctor had seen them earlier in the week but was not concerned. We were told to watch them. When Liam woke up Saturday morning one looked especially bad.


We don't really have answers to what it was. The doctor did a culture of the site and a blood culture. Neither have grown any bacteria so that is a good. Liam did have a fever of 101.5 last night. He is on a few antibiodics; fighting some sort of infection.


Another thing we discovered yesterday was his ANC was zero. ANC, absolute neutrophil count, is the measure of white blood cells that fight infection. As said in the post Numbers Liam's ANC needs to be over 750 to begin Chemo. Anything under 500 nurses need to take neutropenic precautions; masks and gowns before entering the room.


Liam was set to begin his 4th cycle of chemo on Tuesday; that will be delayed now. His resection surgery was scheduled for February 28th; that will depend on when he begins his 4th cycle.

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Sunday, January 23, 2011

Updates Galore

We have been without internet for a few weeks. I have tried to put up a few quick updates, but we have mostly been MIA.

Liam has been doing fabulous! So much energy and incredibly happy. He will be finishing his 3rd round of chemo next week. This round went well. He was a little sick to begin with, but his spirits were never down. One of the chemo drugs has caused some neuropathy in his eyes. He cannot open his right eye as brightly as the left. It does not effect his vision and will go away when he is finished with chemo. The last 2 weeks they have withheld the drug causing the neuropathy. This week he will get half a dose of it.

Those of you following us on facebook already know Liam learned how to crawl this week. He has been on his hands and knees since 5 months old. He would pull his knee forward then drop onto his belly crying. At the time we had no idea why, now we know trying to crawl put too much pressure on the tumor and surrounding areas. Crawling is still uncomfortable for him; he whines the whole time, but he is doing it!
video
Thank you so much to everyone who has shared our website. We appreciate all the support. I know all the thoughts and prayers for Liam are helping.
Thank you for all the orders for "Liam Legs" we have receieved. I can see how far our website has reached when I get an order from someone that says "XXXX recommended your site to me" and I have no idea who XXXX is! Thank you for sharing our site!
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Wednesday, January 19, 2011

LCF Threadz

Please check out the LCF Threadz tab up top.
It has became a theraputic hobby of mine to knit and sew while Liam sleeps.

To place an order please click the email button at the bottom of the page.
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Monday, January 17, 2011

Fundraisers, transplants, and surgeries, OH MY!

I promised an update today so here I am sitting on the cold floor outside the closed Library...

The fundraiser went well. I cannot put into words how grateful we are to know such amazing people. It was packed. Liam even made the news.

After Liam's CT scan his doctors put him on the transplant list. This was done as a precaution so there was no hold up iif that's what his surgeon decided was best. This was devastating, was had hoped and prayed so hard he wouldn't need a transplant.
On Friday, after a week of anxiety, we heard from the surgeon. The tumor, he believes is resectable; meaning after the 4th cycle of chemo he will have surgery to remove it!!!
The best news we could have ever gotten. The surgeon is still working with the transplant team and has sent Liam's scans to them to make sure they agree, but it looks like in 6 weeks Liam is having surgery.

Surgery will mean a 3 week stay in the hospital, but will all be done here in Charlotte.

Thank you so much for everyone's thoughts and prayers!
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Thursday, January 13, 2011

Correction

That's right world, I was wrong. Liam's tumor did not shrink 1/3; it shrank to 1/3. Yup, 62% to be exact.

He had a pretty exciting day yesterday. Played all morning with mommy, then Mommy had to keep him awake on the way to the audiologist. Liam was not a happy camper; screamed the whole way. And do you know what I found amidst the screams? A pearly white. Liam is getting his first tooth. I always thought I would dread the day Liam cuts a tooth, but I am pretty excited. He has been a little fussy, but not bad. I also have a secret weapon most parents don't; morphine.
Liam is not allowed tylenol for two reasons. 1. It is processed through the liver and he does not have a fully functioning liver. 2. It is a fever reducer which they don't want him taking in case he gets an infection; so it won't hide it.
He is also not allowed to take motrin because it effects the platelets and the chemo drops his platelet counts so he needs what he has working appropriately.

We are back in the hospital for round 3 of chemo. Liam did very well with chemo yesterday, even managed to "eat" 18 oz yesterday along with much cereal. Today he is worn out and fussy. His eating is nonexistent today. The doctor says it will probably be Sunday before it picks back up again. He had a pretty toxic drug yesterday; cisplatinum.

We should be heading home later this evening. Just in time to get rested up for Liam's fundraiser tomorrow. Thank you Grandpa Fudge and Aunt Mary for watching Liam so Mom and Dad can attend the fundraiser.
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Monday, January 10, 2011

UPDATES

We have been getting many calls, emails and facebook messages for an update from Friday's CT scan. Here is our update. We don't have all the answers yet. Yes the tumor is shrinking. It is down about 1/3. We still do not know if it has shrank away from the blood supply to the liver yet or not. The tumor cannot safely be removed if it remains near the blood supply. We had hoped to hear from the surgeon today, but the whole city was shut down due to the snow storm.

Our next update is on Liam's food choice. We appreciate the responses we have gotten on what to feed Liam. We have tried some fresh fruit, he won't touch it. We have tried the mesh feeders, not interested. I tried some recipes from www.wholesomebabyfood.com, still no luck. I will keep trying though. He won't eat anything with a spoon. A new food we have had success with his week is cereal bars. We cut them up into smaller pieces and he LOVED it. And I love that they are 70 calories.
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Sunday, January 9, 2011

Thursday, January 6, 2011

A Fork in the Road

Today was a pretty good day for Liam. Today was the last treatment for the second round of chemo. This past week has been a pretty dramatic improvement not only in his appetite but also his activity levels, mood, etc...

Tomorrow is what we can all call a "milestone" day in his journey. He will be getting his CT scan in the morning so that the oncology team and surgeons can quantify just how much progress has been made thus far. For a little perspective chew on this. At his diagnosis his AFP level was over 60,000. This specific protein is a marker in the blood that is used in not only in his diagnosis but also in its' severity. The normal level for a adult is around 8. Yes you read that right...8. His number was essentially "unreadable". His blood count from this morning showed that his number had dropped to 4,000. An improved indeed.

We call this his "fork in the road" because the results of this scan will most likely determine how his treatment will continue. If the results of the scans are positive(which by all accounts thus far they should be)....he will continue with two more cycles of chemo before the surgeons will attempt to resect the tumor. If they believe that the results of the CT are negative....he will immediately go on a transplant list with that whole process starting immediately. We should have some sort of preliminary result in the afternoon tomorrow.

One other thing we would like to address is the many Thank You's we owe to various people that we know and don't know for all the kind donations we have received. We would love to list all the people here but do not want to forget someone.
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Monday, January 3, 2011

Tick Tock Tick Tock

First let me apologize. I know it has been a few days since our last post. I am taking care of a baby and we have been without internet. Please know I do try to post a few times a week.

Friday is the day we have been waiting for. Liam will have his CT scan. We will know next week if he will be having surgery or going on the transplant list. Please be thinking of Liam Friday morning, praying for the tumor to be responding favorably. The doctors already know from feeling his stomach that the tumor is shrinking, but we need it to come away from the blood supply to the liver. The CT will show us that.

Good News. Liam gained 3.5 oz this week. He has been eating more fingerfoods, and drank 11 oz in his bottle today. We need more ideas of what to feed a 10 month old, with no teeth. He likes the 'hard' things; cereal, little crunchies, puffs, biter biscuits. He has refused anything soft or mushy; steamed fruits and veggies.
We tried grill cheese today. He mostly played with it, but got a little in his mouth. What else should I try that he can eat?
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