Never Thought We'd Be in This Position..

Over the last few weeks, we've been going through a really tough time with Logan medically wise. His tumors have been growing uncontrollably since his last surgery in June and we don't know why. To update this easily, here are the emails I've been sending my family the past couple of weeks.

Well it's time for another update!

Logan's actual birthday went well. Mommy, Daddy and Logan spent the evening together, and Logan had his first cupcake! His party is tomorrow afternoon, so I will get pictures out sometime next week. I can't believe he is one! Thanks everyone for being such a great support system for us this year.

Unfortunately, we've had some not so great news. Over the weekend (11-12th) we noticed that he was becoming swollen and thought we noticed some masses down in his scrotum again. I started actively researching fibrous hamartoma of infancy, and also came up with a possible second diagnosis, thinking perhaps we have a misdiagnosis, of lipofibromatosis. Basically a sister diagnosis to FHI.

We had a regularly scheduled check up on Wednesday and I was hoping the doctor would tell me that it was just scar tissue and not to worry, but he didn't. Logan's tumor has grown back VERY aggressively just one month after his last surgery. Dr. Ghandi seemed completely shocked. He took the information I had found on lipofibromatosis and said it could be a possibility. He and I both agree that surgery is not the answer, or not the whole answer at this point. He has a plan of action, which I will talk about in a minute, but in the meantime, we are watching Logan very closely, making sure that he continues to pee. If at any point he stops being able to urinate, we will end up catheterizing him until we can figure out what we will be doing.

Here is his plan of action, which things should already have started by now.

1. He was going to call the pathologist's office and have them re-review the slides of his biopsies of both surgeries. He mentioned that he also might send it to a second office for another opinion.

2. He was going to do a literature search on both Fibrous Hamartoma of Infancy, and lipofibromatosis to try and learn more about both since he's never seen either condition.

3. He was going to contact a pediatric urologist up at Seattle Children's hospital who's also been at Boston Children's and a hospital in Denver, and see if he knows anything about it, or knows someone who does.

4. He is going to post to an online forum for pediatric urologists to try and find a doctor who has worked with the condition before.

Basically, he is fighting for us. He is trying to find a doctor anywhere in the country who has dealt with our condition. I don't know at this point if he would just consult with this doctor over the phone, or if we would end up flying somewhere for treatment. I don't know if there are any other treatment options. I don't know if we even have the correct diagnosis.

After our appointment on Wednesday, I found another possible diagnosis that sounds more like how Logan's condition is presenting, and the next time I'm able to talk to Dr. Ghandi, I will discuss it with him. He definitely seems open to all the ideas I'm throwing at him. It's called Aggressive Fibromatosis. From what I was able to find, that kind of tumor grows back within 3 months (his grew within 1), within the same area, over and over. Some of the treatment plan can include chemotherapy, radiation, and a medication. But we will cross that bridge if and when we get there.

Right now, it's just a whole lot of waiting. It is so hard. I feel like I should be doing more. I'm his mom and I'm supposed to fix everything that's wrong. Dr. Ghandi is very capable and he's working really hard on our case. I will let you know what happens as soon as I know something more.

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Hello Everyone!

Well, we were able to get in to see the doctor yesterday. I'm glad that they are accommodating! They told me to come in at 11, and we might have to wait for a little while, but they would squeeze us in. It took about 45 minutes, but that's ok.

Dr. Ghandi said that it didn't seem like the tumors grew too much since last Wednesday and that part of it might actually be a little swelling that we were feeling, so that was good. We are going to start giving him Motrin every 3-4 hours, I just need to swing by the store and pick some up.

He also talked to the pathologist's office, and they reworked the slides that they had made already of both surgeries. They came back again as the first diagnosis of fibrous hamartoma of infancy. When Dr. Ghandi told them that it had grown back, they were as shocked as he was! Together, they decided that they would reslice the tumors, and send the new ones up to Seattle Children's were they could run some very extensive testing with different inks looking for different markers. At this point in our conversation, the word malignant got thrown around a couple of times, so I guess there is still a possiblity that we could be looking at cancerous cells.

Since the diagnosis came back as FHI again, Dr. Ghandi went ahead and had a literature search done with FHI cases, in Logan's area (the scrotum), within the last 15 years, and English speaking cases. There were only a handful of cases that matched those criteria. The good news that came out of that is that he either knows of the doctor that worked on the cases, or knows the doctor personally, so he will be able to contact them. He had the articles pulled, so he should have them by tomorrow and will be able to start studying them.

He was going to call his friend up at Seattle Children's yesterday (during his lunch hour even), and discuss the case with him to see what his take was.

He also is more than likely going to go ahead and send us to a pediatric oncologist down here at Mary Bridge sometime this week. He said there is an excellent doctor that he knows that he'd like us to meet.

I also asked about getting a scan done because I'm a little worried about the tumors moving out of the pelvic area. He said he'd like to wait for now. He wasn't sure if an ultrasound would detect these kinds of tumors, he said more than likely it probably wouldn't. An MRI has a lot of risks associated with the dye that they use to highlight, the greatest being kidney failure. Not one we want or need to take at this point. A CT scan has the effect of 350 x-rays, which is a LOT of radiation, and we don't want to do that over his testes right now if we don't have to. He said that if at some point we need to do a radiation treatment down there to get rid of the tumors, he doesn't want to have already done a CT scan on top of it. He wants to keep the radiation down as little as possible down there, because it has been linked to future cancer just in the last 18 months.

So, we are at least on the road to some answers. They may not be the ones that we want, but at least we are getting somewhere I guess.

Please just keep Logan, (and us too) in your thoughts.

I have one week left of school and I'm off until September 10th. I'm only working 2-3 days a week, and have been taking more time off from work than that, but it's obviously making money very tight, so if you could just keep all of that in your prayers too that would be great. We'll make it through this, but it's going to be a long, emotional road.

Dr. Ghandi said he will call me tomorrow if he has any new information or not. He knows how worried I am and he knows I'll probably end up back in his office if he doesn't keep in contact with me personally, because he knows how proactive I am being!!

I wish I could just take all of this away from Logan and do it myself, I would do it in one heartbeat, but I know my son is a fighter. He will be ok. We all will.

Love you all,
Kristin

Busy Week!

Wow. Finally a moment to stop and take a breather! This whole week has been a whirlwind of activities, since Nick's cousin Brian was staying with us. We couldn't have him thinking we were just a bunch of lazy people! (Even though we are most of the time!)

Sunday the 1st, Brian flew in from Southern California, and we all went and stayed the night at Nick's parents house. (Nick, me, Pat, Brian, and Logan.) We stayed up and played the Wii and watched this horrible Mormon movie, The Buttercream Gang.

Monday, Dad came over, and the guys (minus Dad) went boating on the lake while Martha, Dad, Logan and I hung out on the beach. It was kind of chilly, but ended up getting nicer towards the end of the afternoon. When we went back to their house, we had a barbeque! We played some more Wii and then headed home late that night.

Tuesday, Pat had to go to work, so Brian got to hang out with us boring people and the screaming baby! Logan wasn't a very happy camper this week unfortunately. We got Frisco Freeze and just hung out and watched TV.

Wednesday, Pat worked again, so Nick and I took Brian on a scenic tour (after eating at Quizno's!) of Point Defiance Park. We went right at dusk. When we were driving through the 5 mile drive, we saw two fox! We stopped the car and they came right up to us. We also saw tons of raccoons.

Thursday, Nick and I just hung out here while Pat and Brian did some stuff.

Friday, Nick took the day off. They all convinced me to let Martha and Doug take Logan overnight. Wow was that hard!! I missed the little guy so much. While they took him, we 4 went up to Seattle. We did the Duck tour that leaves from right across the EMP. It was a nice ride, although the tourguide was really corny, and not that great. It was awesome when we went out on Lake Washington in the car/boat! After the tour, we all went to Safeco Field to the Mariners/Yankees game. We all thought we would be watching a smackdown of the Mariners, but it was actually a really good game and we WON! 3-1! It was cool.

Saturday morning, Nick and I were both really missing Logan. We had had a great night of sleep for the first time in 7 weeks! We met Nick's parents out at American Lake with their boat. The guys all went boating/wakeboarding/innertubing again while Martha, Logan and I hung out on the beach. It turned into a beautiful day! Logan slept most of the time, and was really happy when he was actually awake.

Yesterday, Sunday, all of Nick's family went to the Puyallup Fair. Nick has a cold/flu thing so he ended up staying home. The fair got really crowded pretty quickly, since it's the first weekend. We had a good time, but I could tell Logan was getting extremely hot and tired.

I guess that's about all we did this week. Now for the Logan update.

He had been on Lactose Free formula, but he was getting really constipated from it (poor guy!). He was struggling so hard and would sit and cry and cry. He was barely sleeping again because his tummy hurt so bad. So we tried the Soy formula that Dr. Alleman gave us. We started it Friday night when he was at Doug and Martha's, so we didn't get to see the first night's results. They said he slept for about three hours at a time though, and was having normal bowel movements, yay! So we've kept him on the soy, and it seems like he is liking that a lot better. We were buying the Target brand, but once again, today it made him really constipated. So I went back and bought the real Similac stuff. It is twice as expensive, but I am pretty sure it will keep him regulated, and pain free and that's all that matters.

I just realized tonight that he is turning into a big boy! I had to take out his neck support in the carseat because his head wasn't fitting in it anymore, and he also grew out of the Gerber Newborn onesies. I have so many of those, I'm going to have to go through all of his clothes soon. I can't believe he's getting so big!

I guess that's it for now. I am going to put a bunch of pictures on here so bear with me!



Hanging out in the bouncer with a huge smile!



Hi Guys!



Nick and I at the Duck tour.



All 4 of us on the Duck tour.



The Mariners/Yankees game.



At the game, and Brian being silly!



At American Lake.



So comfy on the grass!



*hiccup* I wasn't drinkin' occifer!



First time in the boat! (in the parking lot) ;)



Happy baby in the car!





Sleepy baby and sunburned Mommy!




At the Fair!

6 week checkup

Well we went to Dr. Alleman's today. Logan weighs in at 10 pounds, 12 oz! He is up 4.4 pounds in 5 weeks! (We left the hospital 5 weeks ago tomorrow, at 6 pounds 8 oz!). He is 22 1/2 inches long, up from 20 inches at birth. His head circumfrence is 37cm. I can't remember what it was when he was born.

With Dr. Alleman's reccommendation, we've decided to switch to lactose free formula instead of breastfeeding. Logan seems to be tolerating that a lot better than the breastmilk. He is almost a brand new baby! So for now, I am still pumping and storing my milk until I can make myself stop. I am hoping that somewhere down the line he'll be able to take the milk that I've stored. If not, oh well. He is so much happier now. It is really rough on me, but I will deal with it.

On Tuesday, Jeanene, Joey, Logan and I went to the Mom and Baby class again. This time, there was a pediatric linguist speaker. It was really neat learning how babies develop their language. She also stressed the importance of baby sign language. We will definitely be teaching him to sign!

Tomorrow, we are meeting Noelle and some other friends and their boys at Odessey 1 during the day. It'll be nice getting out of the house :)

We just found out that Logan will be getting a new cousin on Nick's side! Congratulations Michelle!

That's it for now. :)

-Kristin