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

Party Planning and Contest Entering!

Well I am right in the middle of planning Logan's sailboat party! It's going to be fun! We've just got a lot to do in two weeks!! I'm not going to say much, because I don't want to give it away!!

Today I entered Logan in a Beautiful Baby contest! The Grand Prize is $5000 and a professional photo shoot! Wow! Voting starts July 6 and ends July 30, and then judges help pick the winner who will be announced on August 3. I hope we have a chance! Logan is pretty darn cute if I say so myself, so if you could help us out that would be great! Here is the link:

Vote Here Starting July 6!

And here is the picture that I entered:



So cute!!