Day -8

Logan has not been feeling a hundred percent today. Of course you can't expect someone on chemotherapy to feel great. I think all the medicine has had time to get through his system. He got up and did a couple of laps around the floor and he played some basketball. Most of the day he just wanted to lay down and rest. One good thing is that he hasn't been nauseous. He does have a low fever, but he's fine with it. Usually when Logan gets sick his fever runs in the 104 range. The only thing that worries me is he wont eat or drink anything. He ate a huge breakfast this morning, since then he hasn't wanted a thing. I think his neck might be sore from the central line and it might be hard to swallow.

We decorated Logan's room and it feels a little more homey now, as much as a hospital room can anyway. We put a big longhorn symbol on Logan's door. Four doors down from us there is a family with Austin and Longhorn stuff on their door, I want to meet them!
Three kids got discharged today! I am so happy for those families. Whenever a child gets discharged they have a really cute parade. Everyone comes out and lines up in the hall, the kids being discharged and their families walk in the middle, and everyone throws confetti and cheers for them. I'm probably going to cry like crazy when it's our turn. But that's not for at least another two and half months.
I am at the hospital tonight and Billy is going to the apartment. He didn't get any rest. I'm sure he is looking forward to the bed. Well, I'm done for tonight. Hopefully Logan will feel a little bit better tomorrow, but I'm not going to get my hopes up for that.

Logan's room, after we decorated.

Logan's Door, we are still going to add more.

Day -9

Today is the day I consider the official beginning of it all. Logan started his chemotherapy today. The chemo he is on is called Busulfan. He will have to take it every six hours for four days then he starts a different type of chemo. Busulfan inhibits the growth of rapidly dividing cells like cancer cells and can suppress the immune system.
Logan has been doing great, I am so proud of him. The only thing he had a hard time with today was getting the dressing changed around his central line. Everyone says the first dressing change is the worst because there tends to be dried blood on the gauze which causes it to stick to the central line entry point. His new dressing doesn't have any gauze on it, it's just a plastic type bandage. (it looks like clear tape) Logan was a little sore from the central line surgery he got yesterday, but he didn't make a huge fuss about it. He got up and took a couple of walks on the floor, drove around in the little car, and played some basketball! When I left the hospital he was pretty tired. He was dosing and watching TV. I think he will sleep just as well as he did last night.
We met a couple families on the floor. Everyone is so kind. There is a family there that we had already met about three weeks ago. Their little boy, Joey, got a stem cell transplant. Logan and Joey were supposed to be admitted at the same time, but Logan got pushed back two weeks. Joey is doing amazing, he is so cute and has so much energy! Joey and his family gave Logan a welcome to the floor present. Also, our friend Penny made Logan a poster for his door. It is beautiful, everybody stops to look at it! We also met a lady from family support today. Logan got a care package full of fun things to do and they had little projects in there to get him motivated to walk around as much as he can. She had us make a wish list for all three of the boys because Santa is coming for Christmas in July. They are going to mail presents to Austin and Aiden. We also found out that the a NASCAR pit crew is coming at the end of the month. They are bringing goodies for all the kids on the floor.
Billy is at the hospital with Logan tonight. I didn't get a whole lot of sleep. I am going to have to get used to all the beeping and buzzing. I think I may have already because when I came home to the quite apartment it seemed odd not hear those noises. I am definitely looking forward to the big comfortable bed!
I didn't have a chance to talk to Aiden and Austin tonight. I couldn't call until after their bedtime. Mom says they are doing great, and being good boys. I am also so proud of them, they, too, are having to sacrifice a lot right now, even if they don't realize it. Well, I am tired and tomorrow is going to be another long day. I only hope that Logan will do as great as he did today.

Logan's first round of Chemotherapy 7:00am on 7/7/2010.

Logan playing basketball

Logan chilling out while getting his second round of chemo.

The poster Penny made for Logan!

Day -10

Today Logan got his central line put in, it is also known as the Hickman catheter. He has a central line to receive Chemotherapy and other medications. Also, to give blood products, to give nutritional fluids, to draw blood and to infuse stem cells or cord blood. The catheter itself is a soft, flexible tube that is inserted into a large vein in the chest that leads to the heart.
Logan also started a medicine called Dilantin today. It's anti-seizure medication. The first round of chemo he is starting tomorrow can cause seizures, but the Dilantin will prevent this. Logan is doing ok right now. He threw up a little bit, but I think that's because of the pain meds. They gave him Zofran so that should help. He is almost asleep, it's been a long day and he is very tired. He is doing so well with the central line. I don't think he has even noticed it's there because he has a shirt on. I am so proud of him, he has been such a brave boy. He is not liking the idea of taking meds orally, but I think in time he will get used to it. I tasted the ones he has taken so far and they don't taste bad at all, so I think he may just be a little scared. Hell, I'm a little scared....
If you are wondering why today is Day -10, its because Day 0 is transplant day. I'm staying at the hospital tonight. Billy and I are going to switch off every other night. Only one parent is aloud to be here at night. Well, that's it for tonight. I am going to attempt to get a little rest, but we will see how that works out :)


Logan's Central Line

Logan's Room

Logan playing before bedtime!

5200

So, everything starts tomorrow. Logan gets his central line in at 9:15AM and will be admitted to 5200. That's the transplant floor. The floor has an isolated HEPA-filtered air system. Each room is filtered as well. When you first walk in you go into a room that's air locked. Visitors have to put on little booties over their shoes. The parents get to bring their own "clean shoes" that don't leave the floor. You have to wash your hands before you are allowed to enter. It's pretty nice how they have everything set up. There are a total of 16 patient rooms on the floor. The patients are encouraged to be active so there is a playroom with many toys for them to play with, videos to watch, and video games to play. All the common areas are wiped down after each use to prevent spread of bacteria. There are some accommodations for the parents such as a common kitchen, a common bathroom with shower, and a relaxation room. There are also times that companies or churches will bring meals for the whole floor. A masseuse and a hair stylist come once or twice a week to provide services for the parents as well. The nurses on the unit are exclusive to the unit, meaning we won't have to deal with a nurse that has no idea what goes on in the unit. The nurse to patient ratio is either 1:1 or 1:2. The patients' vitals are monitored in the room as well as on a large LCD screen outside the room. That's about all I can think of right now.

Aiden's doing great! He learned how to swim. I am a little sad I couldn't be there for it, but Tashie sent me a video of it!
Austin is doing great too! He is a little brat boy as usual... haha. I miss them so much. I call them and talk to them everyday. It makes things a little easier. Well this is going to be it for tonight. I still have quite a lot to do to get ready for the hospital. Oh yeah, I thought this was funny: I have to put Logan's stuffed animal, Doggy, in the freezer! This way it kills all the bacteria and dust mites. It probably sounded pretty funny to our neighbors when I reminded Billy to put Logan's dog in the freezer today!

Aiden Swimming!

Austin Swimming!


Little Angel

How It All Began

I know it has taken me a while to get this thing started, I think it's because in my head I knew this would make everything more real. Not that I'm in denial or anything, I know that Logan has Sanfilippo Syndrome, and I know that this transplant is going to happen. I guess I'm a little scared and writing all of this down makes it very real.

So, to get things started... Logan was diagnosed with Sanfilippo Syndrome on January 16, 2010. We knew there was something going on with Logan when he was about a year and half old. It wasn't difficult for us to figure out because he has a twin brother, Austin, and an older brother, Aiden. We could compare them and see that Logan was falling behind.

First it was nothing. Logan was completely normal from 0 to 12 months, reaching all of his milestones on time. We thought we had a perfectly healthy little boy! When Logan was about a year we noticed that his stomach would get really bloated. At the end of the day he looked like he was nine months pregnant. We went to many G.I. appointments to try to figure out what was going on. After many tests and an endoscopy, to our dismay, we found nothing. Our G.I. doctor was stumped. At about a year and a half we were worried because Logan was not talking at all. So he started speech therapy. It didn't help with his speech at first, but it changed his behavior drastically. We learned different ways to communicate which helped relieve some of his frustration. Soon after this we noticed that he was very unsteady when he walked, so he started physical therapy. The physical therapy helped him a lot, but still didn't help with his unsteadiness so much. His doctor suspected inner ear issues and referred him to an ENT. It turned out Logan had so much fluid in his ears he could not hear well at all. No wonder he was so unsteady on his feet, he was probably dizzy all the time! The ENT had tubes put in Logan's ears. It was a like a miracle. He started talking and he walked without falling down and running into things. It was great! So all of Logan's problems were solved! Not really, he still had the belly problems, and we were on a mission to figure out what was causing it.

Logan's doctor decided it was time to see a geneticist. Even though he was using words and walking great, he was still behind. The geneticist ran a lot of blood tests but didn't find anything, so she ran some more blood tests and a urine test also. She said it would take 3 to 6 weeks until we got results.

January 16, 2010. I will never forget this day. It was like any other day. The boys had just finished eating dinner when I got the phone call. Billy took the kids in the living room so I could hear. The lady on the phone said that she was from the geneticist's office, and she had the results from Logan's labs. She told me that Logan has something called MPS. They were pretty sure it was Sanfilippo Syndrome but they needed a skin biopsy to be sure. She went into a little bit of detail about the disease and kept pausing to ask if I was alright, I found that odd because the way she was talking it gave me the impression that we could fix this problem. By then I had moved upstairs into my bedroom because lets face it, boys are loud! There was a long pause and then she dropped the bomb, "Mrs. Pacl, you need to know there is no cure for this disease and it is terminal." I have never fainted in my life, but I thought I was going to right then and there. Billy walked into the room and it probably only took one look at my pale face to know that something was wrong. The lady talked for a little longer, I still have no idea what she said I didn't hear a word of it. I got off the phone as quickly as I could because I was going to lose it. I think I had a panic attack after I got off the phone. I was trying to explain to Billy what she told me, but I think I was pretty incoherent. It was like something inside of me had died. I had Logan, but it felt like I had already lost him. Someone just told me my son was going to die early, and there was nothing I could do about it.

Billy and I were devastated. For about three days after I think I actually grieved. Not so much for Logan himself, but for Logan's future, our future. Logan was never going to be able to go to school with his twin brother, he was not going to be able to play sports, or go on joy rides with his brothers. His life was going to be replaced with pain and endless doctors appointments. The third day I snapped out of it and decided it was time to do some research. There may not be a cure for this disease but there had to be some way I could help him! I went to the MPS Society website and got a lot of information. I came across a tiny little paragraph saying they have done something called stem cell transplants for Sanfilippo kids but they were unsuccessful, so I put that out of my head. I did a lot of goggling and found two people. Two people that I will always be thankful for, because if it was not for them I would have never known how much a stem cell transplant can help. These two people both had children that went through this procedure and they both gave me contact info for the doctors and Duke University. I contacted them immediately and the process started.

It has been six months since Logan's diagnosis and Billy, Logan, and I are in NC getting ready for Logan's stem cell transplant. Aiden and Austin are back in TX with mom and dad. I can't even began to tell you how hard it is to be away from my boys, and for so long. It's heartbreaking. But I know at the same time this has to be done, I have to try to give Logan a better life. The stem cell transplant can greatly improve Logan's quality of life. The transplant can stop all the physical symptoms of Sanfilippo and help with the behavioral and sleeping problems. It wont help with the cognitive issues though. That's why this disease is so bad, nothing is able to pass the blood brain barrier. The procedure is very risky, it's damn right scary when you read all the consent forms and every other line you see the word "fatal." But if there is a chance that we can give Logan a happier, healthier life, you can bet we are going to do it!

As of right now, Logan is getting his central line put in and will be admitted on July 6th. He will start chemotherapy on July 7th. And on July 16th, exactly seven months from his diagnosis, he will get his transplant!

I have learned a lot in the past six months. I know now that I have to live in the moment, which isn't easy for me. I will cherish each little memory I have with my family and of course take lots of pictures! I have learned to have hope and to be a stronger woman.

Eleanor Roosevelt once said, "you gain strength, courage and confidence by every experience in which you really stop to look fear in the face.... you must do the thing which you think you cannot do."