Tuesday, April 29

Through this horrible disease we try to take positives from the experience. One of those positives is we met the Towne family…Jeff, Carin, Ryan, and their amazing son Ben. During the last 9 months there has been no one that can relate to what we are going through except them……Yesterday the Towne family received some devastating news….Ben still has cancerous cells in his bone marrow.
Ben will now automatically be entered into the experimental program that Logan was randomized into.
Words can not express our thoughts…..Ben, please know that you are in our thoughts and prayers. You have an amazing Mom & Dad and you will all pull through and beat this.
To everyone that reads this blog……please send all your thoughts and prayers to Ben and his family.

Thursday, April 24

Hello all. Logan is doing well. We finished our last shot of the 14 days today, Logan has been a trooper, but none of us look forward to that every morning. We are now in our 2nd day of the pills, he takes 2 in the morning and then 2 at night, for 14 days. The first couple of days were difficult, a 6 year old doesn't really like the feeling of swallowing a pill. Today... Logan was amazing. He got up, took his pill, that was it. No yelling or gagging. Jason came down and asked Logan if he was ready to take his pill and Logan gave him the cutest smile, as if he did something really special..... and he did.

Logan also had his teacher, Mrs. Pesature, come over to do school. She comes over 2 x a week ( Logan's schedule permitting ) and she does the same work with Logan that she is doing in her class. We are in hopes of Logan keeping up, she will continue teaching Logan through out the summer. So far he is doing really well, he seems to learn quickly. Thank you Toby, Jason and I are very grateful for your commitment to Logan and his learning. Logan lights up the days you come over. He really misses his teacher and kindergarten class.

Logan is heading to NW Trek tomorrow with his friend, Chloe. We are in hopes of seeing babies while we are on the tram. Should be alot of fun. And fun is all we will be doing...... we are free ( no hospital ) until Monday May 5th. Yeah!

Tuesday, April 22

Hello...Logan & Dad here. Logan is here by my side telling me what to write today. Logan said it is hard swallowing down the new pills he has to take, 4 per day. He cannot chew them they have to down whole. Logan wanted to tell his older brother Josh hello. He also wanted to tell Josh he loves him. Logan is done talking now because cartoons came back on.
He has been doing pretty well the last two days. A little tummy pain here and there but no getting sick.

Sunday, April 20

Logan is starting to come around. He was pretty much up all night Friday night w/ pain & nausea. Yesterday he was feeling a little better but still had bouts of pain & nausea. Last night just up once w/ nausea...and this morning is feeling good. He is joking around and playing w/ Peyton. This afternoon he is going to go over to cousin Sydney's to play. This next week Logan just has two appointments. Monday he has blood draw and meeting w/ doctor. On Thursday just blood work. We get to stop shots on Tuesday and then he starts taking 4 pills a day (acid treatment). The medication is basically a very strong acne medication. Logan will have very dry skin, nose, & eyes. He will also be extra sensitive to sun so anytime he is outside we will need to cake on the 50 SPF. This medicine is known to also seek out and kill and remaining tumor cells along w/ the experimental. Anyone that wants to read about the study Logan is in you just need to Google Phase III Randomized Study of Chimeric Antibody 14.18. I tried to post the PDF that I have but have been unsuccessful.

Friday, April 18

We got home around 3pm today. Logan was not feeling well all morning. Still some stomach pains as well as headaches. Minutes after he walked in the door though he started doing better. The last hour he has been playing w/ Peyton pushing him around in a laundry basket. The power of home...nobody constantly poking at you.
This weekend will be a family weekend and let Logan get back his strength. The doctors said he should be close to normal by Sunday. Thank you all for your thoughts and prayers this week to help Logan & family get through it.

Thursday, April 17

4 down 16 to go! Week 1 of 5 complete! Logan is in a lot of pain but hour by hour he is feeling better. He has had a fever all day until just recently...he finally beat it. He also bit his cheek and that has caused him a lot of pain. The goal is to go home tomorrow if Logan feels well. No fevers is the goal. Today he spoke w/ Peyton via speaker phone. It was awesome. Peyton was grunting into the phone every time he heard Logan's voice. Logan cannot wait to see him. We have tried to keep Peyton away because of the visible pain Logan is in as well as Peyton these days cannot sit still;) Peyton has been staying with Aunt Traci when not at home...it is so nice to have an amazing family.
Well we went into this experimental ready for about anything....the nurses did a great job controlling Logan's pain. We have had the pleasure to work w/ one of the best nurses the whole week...Thank You Amber for making our week better. Your smile & sense of humor have really helped us.
This is Logan and Dad signing out from room T-3271...until next time....tomorrow:)

Wednesday, April 16

3 down 17 to go....Today was a rough day. They started antibody at 9am today and by 11am Logan had stronger belly pains than days past. He also got sick and was throwing up so hard his NG feeding tube came out of his mouth. We had to pin him down and pull it out completely through his nose. It did not cause him pain but it is real uncomfortable because of the gag reflex. We then of course had to put in a new one. Logan did awesome. He did everything he was supposed to do....the nurse puts it through his nostril and of course the hard part is getting it to bend and make its way down his throat. Once it gets to his throat he swallows to help it go down faster. They the give him a chest x-ray to make sure it is in his tummy vs. a lung. The nurses were very impressed how Logan did. Once we got the right amount of morphine balance Logan seemed to do better. Tonight I am taking a night at home to catch up on sleep and aunt Kristi is staying w. him in which Logan was thrilled. She brought a Sponge Bob movie with her and Logan was pumped. If all goes as planned...as is the case so far....we should get to go home sometime on Friday. Dr. Park thinks Logan should be back to his normal self by Sunday.

Tuesday, April 15

2 treatments down and 18 to go. A better day for Logan than yesterday. Today we knew what better to expect and treated him before he showed the symptoms. Last night was a long night...Logan had a low blood pressure as well as a fever so that in turn required a lot of visits from the charge nurse and the night doctor. We watched movies from 3am to 4:30am. He powered through everything as usual and was up dancing this morning for the nurses. Currently as I type this he is watching a movie and being slowly weaned off the morphine. We are going to go for a walk shortly to get some exercise...for both of us.

Monday, April 14

Day 1 complete....19 more to go (they only give him the antibody 4 days during the week x the 5 visits). Logan did very well. They started the antibody at 11am and by about 1pm he was in extreme pain. A lot of chest and abdomen pain. They started him at a high dose of morphine....they started him at the highest we ever got for stem cell. They also give him more doses throughout to help even more. Basically they snowballed him w/ morphine....it worked. He fell asleep through almost the rest of the medicine dose. We finished at about 5pm. As soon as the nurse shut it off he almost instantly felt better (a half hour before she shut it off Logan sat up real quick....got dizzy...and yep lost it all over himself and his bed). So tomorrow they will load him just before the antibody and hopefully he will sleep through most of it again. It was so hard for Kelly and I to hear Logan scream in pain....Peyton even looked over at Logan worried. For every scream it is a bad cancer cell that was hiding that just died! I cannot say it enough Logan is amazing and a true superhero.

Sunday, April 13

We are all packed and ready for our 1 week get-a-way to the four seasons in Seattle...a.k.a. Children's hospital. I have been talking w/ Logan about it today and he seems to being doing pretty well with it all. We told him this is a different type of medicine that he has never had. This medicine will give him owies in his tummy and back. He said like cramps. I said yes cramps that hurt a little but the doctors will give you medicine to make you feel better. This morning was day 3 of 14 of morning shots.....Logan laughed when I gave him the shot. He is amazing. Please continue to send your thoughts and prayers our way...for a pain free quick week.....THANK YOU!

Saturday, April 12

Mohawk! Yes Logan wanted a Mohawk and how could we say no. He has been through so much he can basically do anything (no tattoos or piercings yet...wait a couple years;)). He has been doing awesome. Tomorrow he goes in for 4 hour blood transfusion and gets admitted Monday. Enjoy the pictures!

Thursday, April 10

Today we found a little more out about the experimental treatment....it is going to be a little more intense than we thought. It won't just be one week in the hospital and three weeks out. During some weeks out Logan will be needing to be on 24 hour IV treatment and will have to go back to the hospital daily to change out IV bags. Starting tomorrow I need to give Logan a shot every day for 14 days...he is not so happy about that. I will also have to do this later in the treatment. We have to go in this Sunday for a 4 hour blood transfusion. One week during his stay in the hospital we found out he may be there longer, 7 days. We also found out today it has been a year and a half since the last patient went through this treatment. After all that being said...and digested by Kelly & I we are still going to go through with the treatment. This is the hardest decision either us have ever had to make.
Logan continues to do great. This morning he woke up w/ sore legs because he played so hard yesterday w/ his friend Chloe. Mom, Logan, Peyton, & Aunt Kristi are headed up to Children's hospital right now so they can do some blood work to get Logan ready for next week. They also need to give him a shot to help boost his immune system for the next week. It sounds like we will be giving him some shots at home as well.
Next week is getting closer and I am getting more and more nervous everyday. As you can imagine I am not looking forward to seeing Logan in pain at all and/or spending more nights in the hospital. But in the back of my mind I keep telling myself we are doing everything we can to make sure this nasty disease stays away.

Monday, April 7

Remission....Logan is officially in REMISSION!
Today we met with Dr. Julie Park & team and heard that amazing word. Our amazing son Logan has no cancer in him at this time.
What's next....well Logan was entered into a random lottery to see if he gets the experimental treatment as well as the normal treatment....I guess you would say we won. Logan has been selected to go through the treatment. He will be admitted this next Monday for one week to start the 5 month treatment. We will be in one week out three for 5 months (through mid August). To let you into my thoughts as I so often do I have mixed emotions. I am so glad he gets the experimental because I know we are doing everything we can to make sure his cancer does not come back. But to know I have to put my son through what is described as extreme pain for one week tears me up. To have to make Logan go back to the hospital for more treatment sucks. If we did not get the experimental Logan would start an acid treatment at home (pill form). He will still get this as well as experimental. If that were the case we could try to resume to be a somewhat normal family again. Logan could enjoy Peyton's first summer outside and take him for rides in his John Deere Tractor. There is a reason Logan was selected...I know this. Come August when this is over I will be grateful that Kelly & I and our amazing boy Logan has done everything we can to get rid of his Neuroblastoma forever. As I say all the time and mean from the bottom of my heart....THANK YOU so much to everyone for your thoughts and prayers. For all of you that have kids please give them an extra hug tonight and tell them one thing they did today that made you feel great. Today Logan made me the proudest dad in the world because he is more than a man that I will ever be. He has made everyday an amazing day....Thank you Logan, I Love You.
Click here to watch a powerful video as to why our government should fund finding a cure.....they have recently cut funding!

Sunday, April 6

Logan had a great weekend...as did we! We did absolutely nothing but sit around the house and enjoy just being a family. Logan is in a great mood and loves being a big brother. Currently as I type this he is trying to teach Peyton how to crawl. He has managed to get Peyton up on all fours but that is about it. He really Loves being a big brother.

Saturday, April 5

Well we got the best news possible with the bone scan! Logan showed no signs of cancer in his bone marrow! Logan, Peyton, Kelly, & I are celebrating today at home the best news possible! I told Logan when we found out...the conversation went like this:
Dad: "Logan"
Logan: "what"
Dad: "Remember when they stuck those needles in your hip bones and took some bone marrow out?"
Logan: "yeah"
Dad: "They tested that and it showed all the cancer is gone!"
Logan: "why?"
Dad: "Because you have been doing such a great job in taking all your medicines."
Logan: "Does this mean I don't have to go to the hospital anymore?"
Dad: "No, we still have to do some things to make sure it does not come back."
Logan: "Oh.."

He then smiled and went back to playing his video game.
Kelly & I got the news while over at Uncle Pat & Aunt Traci's house. I took the phone call from the nurse...when I told Kelly she broke down in tears of joy. A huge monkey (gorilla) was lifted off our back. We know we are far from being out of the woods but....yeah we will take it.
We cannot thank everyone enough for all of your powerful thoughts and prayers. They are working!
We now meet with Dr. Julie Parks on Monday afternoon to go over test results in more detail as well as see as to where we go from here.

Wednesday, April 2

Logan has lost a little more of his hearing. It is still the high pitch sounds and not the normal speaking tones. He still will not need hearing aids at this time. The nasty chemo drug Cisplatin he received twice is doing the damage and it will continue to do possible damage for up to a year. We will have another hearing test later this year. Tomorrow we have scans and possibly might have results of bone marrow test that was done yesterday.

The picture attached was taken by a very nice lady at the Mariner's game. She just e-mailed it to me. Logan used to be very scared of the moose....as you can see things have changed.

Tuesday, April 1

Go Mariners! Logan, Josh, Aunt Kristi, and Dad had a blast at opening day. Logan did engulf his cotton candy in record time and got a little tummy ache but other than that he had a great time. Logan & Josh both made it down near the field to get the Mariner Moose's autograph. The guy sitting in front of us also caught a fly ball and gave it to Logan...he was pumped. Also a big THANK YOU to Ben Townes parents who surprised Logan at his seat w/ a Mariner backpack filled w/ goodies. Logan thought that was awesome!
Today Logan & Mom are up at Children's Hospital starting all the testing again to see if there is any evidence of his cancer. This will be a hard/long week for Kelly & I. Of course we are praying that there is nothing. Along this 8 month journey (nightmare) of cancer we always know what the next step in treatment is. After this week we really do not know what is next....Wouldn't it be nice just to go on w/ our life and never think about cancer again. We know that will not be the case...but is nice to dream though. Please say an extra prayer this week that his cancer is gone....forever!