Logan has turned into such a sweet little boy. Yesterday, we were at my dad's house and he had already left. We still had about 15 minutes until we needed to go pick up Nick from work, but I went ahead and got Logan's coat and shoes on. Everyday, when we leave my dad's, I hold Logan's hand now and he walks to the car because he's a big boy. So yesterday we picked up all his toys, and I was sitting there watching the TV for a minute. All of the sudden, Logan walks over to me, sticks his hand in the air, and looks at me like "come ON mom, it's time to go get Dad!". I grabbed his hand, turned off the TV, and we left, even though it was still too early. He was holding it so tightly, and my heart just felt overwhelmed with joy. I cannot love this little boy any more than I do already. There is no way! Moments like these make me grin from ear to ear.
He's been doing a lot of hand holding lately. When we're sitting on the couch (mostly me, not so much Daddy), he'll walk up, lean with his back to the couch and just hold my hand. It is the sweetest thing.
He's in a Mommy phase I think. I had to take him to the grocery store the other night because he wouldn't let me put him down. He scream and cry every time I put him on the floor. Last night, I had to hold him while I made dinner. It may make things difficult in the short term, but I love that he loves his Mommy.
Love you Log!
Friday, October 23, 2009
Sunday, October 18, 2009
Pumpkin Patch
Well, we braved the rain and muck yesterday and headed out to Maris Farms in Buckley, Washington. At first we decided not to go yesterday because when we woke up it was pouring but after a couple of hours the sun kept trying to poke through so we just went ahead and went.
It's not too far from here, maybe a 35 minute drive (thank you freeways)! We pulled in and you could see the huge pumpkin field and an even bigger corn maze.
We bought our admission tickets ($10 apiece and they gave us $2 each in Maris coins because one of their attractions was closed due to the rain.) we put on our bracelets and headed inside. We walked around for awhile because this was a huge place with so much to do we weren't sure what to do first! Finally we settled on the animal barn.
Logan saw the bunnies, sheep, pygmy goats, chickens and roosters, and of course they were all DOGGY! It was too cute. We were the only ones in the barn so that was neat. Then we walked out the other end and see ponies tied up in a little circular track thing. There was lots of whisper between Martha (my mother-in-law) and I about if they'd let Logan do it. Finally I just asked and they said yep!
$5 and Logan got his first pony ride. He rode Snowfire who was also a Doggy, but who he liked very much. We got to pet her/him (I didn't catch which) and Logan liked that too. I held Logan on the saddle as the horses were led in their circle. Logan had a grin most of the time.
When we got off, we decided to do the corn maze while it wasn't raining. We parked our wagon under the entrance tent and ventured into the short maze. They gave us little papers with clues on how to get out. We had to solve riddles and questions whenever we came to a sign. We solved the short maze in about ten minutes and the sky was still holding, so even though we were getting muddy we went ahead with the long maze. This time we were stuck in there for a good 45 mins but it was a lot of fun for the big people anyway. I haveno idea what Logan was thinking but I'm sure he thought we were all going bonkers.
When we got out of the maze we headed to the kiddie play area. We let Logan ride a mini sized tractor and then he went on what they call
The Cow Train. It is a bunch of little cars decorated like cows pulled by a giant tractor. There is only enough room for a little one on this train so Logan was a big boy and went alone. He had a good time. I followed it but he didn't even look for me. The poor kid in front of him screamed the whole way.
The rain was starting to pick up by this point so we headed to the pumpkin field to get our perfect pumpkins. Logan had fun touching them and then riding in the wheel barrow.
Off to pay and then we were out of there. It was a nice afternoon and not ten minutes after we left the Heavens opened up and the rain started pouring.
We sure had a lot of fun and going to the pumpkin patch is a tradition I can see happening in our family for a very long time.
-Kristin
It's not too far from here, maybe a 35 minute drive (thank you freeways)! We pulled in and you could see the huge pumpkin field and an even bigger corn maze.
We bought our admission tickets ($10 apiece and they gave us $2 each in Maris coins because one of their attractions was closed due to the rain.) we put on our bracelets and headed inside. We walked around for awhile because this was a huge place with so much to do we weren't sure what to do first! Finally we settled on the animal barn.
Logan saw the bunnies, sheep, pygmy goats, chickens and roosters, and of course they were all DOGGY! It was too cute. We were the only ones in the barn so that was neat. Then we walked out the other end and see ponies tied up in a little circular track thing. There was lots of whisper between Martha (my mother-in-law) and I about if they'd let Logan do it. Finally I just asked and they said yep!
$5 and Logan got his first pony ride. He rode Snowfire who was also a Doggy, but who he liked very much. We got to pet her/him (I didn't catch which) and Logan liked that too. I held Logan on the saddle as the horses were led in their circle. Logan had a grin most of the time.
When we got off, we decided to do the corn maze while it wasn't raining. We parked our wagon under the entrance tent and ventured into the short maze. They gave us little papers with clues on how to get out. We had to solve riddles and questions whenever we came to a sign. We solved the short maze in about ten minutes and the sky was still holding, so even though we were getting muddy we went ahead with the long maze. This time we were stuck in there for a good 45 mins but it was a lot of fun for the big people anyway. I haveno idea what Logan was thinking but I'm sure he thought we were all going bonkers.
When we got out of the maze we headed to the kiddie play area. We let Logan ride a mini sized tractor and then he went on what they call
The Cow Train. It is a bunch of little cars decorated like cows pulled by a giant tractor. There is only enough room for a little one on this train so Logan was a big boy and went alone. He had a good time. I followed it but he didn't even look for me. The poor kid in front of him screamed the whole way.
The rain was starting to pick up by this point so we headed to the pumpkin field to get our perfect pumpkins. Logan had fun touching them and then riding in the wheel barrow.
Off to pay and then we were out of there. It was a nice afternoon and not ten minutes after we left the Heavens opened up and the rain started pouring.
We sure had a lot of fun and going to the pumpkin patch is a tradition I can see happening in our family for a very long time.
-Kristin
Friday, October 16, 2009
Firsts
Well, last night I thought we were going to have to make our very first Emergency Room visit. Nick went downstairs to let Pat in and Logan got reall excited so he went running across the hard wood floors. Somehow he tripped over his own feet and went face first into the floor. I ran and picked him up and he already had a face full of blood. I yelled for Nick to come back upstairs and by the time he ran up the stairs (he heard the fall) there was blood all over the floor and myself.
We couldn't tell at first how bad logan's mouth was because he wouldn't let us look inside but it bled heavily for a solid ten minutes. I was panicked. Finally we were able to tell that his two top teeth had punctured the lip but not gone through. It stopped bleeding and I gave him an ice pack to chew on. It was so scary!!!
Where is that instruction manual???
Now he's got a big fat lip and you can see where his teeth went it poor baby. But he is such a trooper and was fine after the first ten minutes.
Tonight we built our very first sheet fort, he could have cared less. We finger painted for the first time too. He liked that for a couple minutes bit was done quickly.
Tomorrow we are off to the pumpkin patch in the rain!
-Kristin
Thursday, October 15, 2009
Tired Little Boy
Last night, Logan was such a tired little boy. We brought him home and he was playing and very active as usual, (he's turned into QUITE the toddler). He started falling down a lot and getting whiny, his new tell tale signs that he's sleepy, around 5:30 as I was cooking dinner. So he and Daddy were snuggling on the couch. When dinner was ready, I made a comfy bed on the chaise lounge with our big fleece blankey and Logan curled right up in it with a pillow. He slept from 5:30-8! He was so sweet. I got a really cute picture that I'll upload soon. At 8, I tried to catch him but he went feet first and slid off the couch.. oops! He only cried for a second though.. phew.
I changed his diaper, and got him some milkies. I put his little skelly pajamas on him (those things are the cutest!) and then we went upstairs for a book. Daddy was gone, so it was nice just to cuddle with him. I read him "Where the Wild Things Are" while we cuddled. :)
Then it was time for a tooth brushin'! He's so funny! I did notice that we finally have one whole molar, yay! Only 3 more to go for now.
After that, we walked to his room, and I put him in his crib. I had his Mickey Mouse stuffed animal do the "Hot Dog Dance" which he finds hilarious. Then Mickey got tired, so Mommy kissed Mickey, and Logan kissed Mickey, and he got tucked in on the changing table. Then it was Logan's turn. :)
I tucked him in, left the room, and didn't hear a single peep until 4 am!!!! That is AMAZING! He hasn't been sleeping well lately and was still waking up at least 3 times a night, so for him to not cry at ALL all night is simply wonderful!
I love my little man.
I changed his diaper, and got him some milkies. I put his little skelly pajamas on him (those things are the cutest!) and then we went upstairs for a book. Daddy was gone, so it was nice just to cuddle with him. I read him "Where the Wild Things Are" while we cuddled. :)
Then it was time for a tooth brushin'! He's so funny! I did notice that we finally have one whole molar, yay! Only 3 more to go for now.
After that, we walked to his room, and I put him in his crib. I had his Mickey Mouse stuffed animal do the "Hot Dog Dance" which he finds hilarious. Then Mickey got tired, so Mommy kissed Mickey, and Logan kissed Mickey, and he got tucked in on the changing table. Then it was Logan's turn. :)
I tucked him in, left the room, and didn't hear a single peep until 4 am!!!! That is AMAZING! He hasn't been sleeping well lately and was still waking up at least 3 times a night, so for him to not cry at ALL all night is simply wonderful!
I love my little man.
Wednesday, October 14, 2009
Wow, it's been a long time.
I can't believe I've let it get to be a few months since I've written here! I am a bad Mommy!
First, a very important update: Logan is just fine! We got news in August, after sending new biopsies off to Seattle Children's hospital that his tumors were in fact Fibrous Hamartoma of Infancy, and still benign after all! Then, the even better news came when the lumps started going down, and we realized it was just scar tissue that had built up quickly, not the tumors regrowing as we had feared! We just had a check up on Monday, and he's still looking great! No sign of tumors, and now we don't go back for six months! Dr. Gandhi said the longer we are out from the recurrence, the less likely they are to come back! Yay!
Logan had his 15 month check up last Friday with Dr. Alleman. He was 22 lbs, 11 oz and 31 1/2 inches long. He is at the 25th percentile for weight now and the 50th percentile for height. Dr. Alleman said he got a little skinnier just because he's walking and almost running, and just being generally more active now.
He is growing up so well! I can't believe how big my baby has gotten! He is such a little ham, and has such a funny little personality. He loves tickling Mom and Dad, and now he dances to the Mickey Mouse Clubhouse hot dog song! He has a whole routine he does! He stomps his feet and then spins in circles, and does it over and over, all the while saying "ah dog, ah dog!" It is the funniest thing.
He is in the process of getting all four of his one year molars. That sure has been fun. NOT. He hasn't been sleeping very well, so of course Mom and Dad are pretty tired too. But we are all surviving.
Some of his favorite things right now are:
1. Fans. He loves seeing fans.. ceiling fans, stand up fans, box fans.. it doesn't matter. Anytime he sees one if he can reach it, he'll go stand by it and start talking to it. It's a favorite passtime at Poppa's house, and we even call it Mr. Fan (and Mr. Vacuum too!). He holds entire conversations with them.
2. Logan-ese. His said language with the fans, we have no idea what he's saying. He will start repeating what you say though, especially if it is something like "Boogity boogity boo."
3. Hiding all sorts of food in his high chair for later. He loves to make little piles of food in his high chair so he can swing back by later and snack while he's playing! Or if it doesn't like it, he'll stick it next to his legs and then wiggle them very quickly back and forth so all the food goes out the leg holes. Or for the food he REALLY doesn't care for, he'll just dump it over the side of the tray.
4. Throwing himself back for his sippy cup. Our sweet little boy still hasn't learned how to sit UP and hold a cup, he must lay down to drink, so as soon as he sees his cup (even if its empty), he throws his head back and lays down. It doesn't matter where he is. He could throw himself down on Poppa's shoe, right at his high chair leg, right onto the hard wood floors, or, when he's feeling particularly cute, he'll grab a pillow first and then lay his head on it.
5. Opening doors. That's his new trick this week! We have the lever style doors in our house, and the little stinker has figured out how to open them! We better watch out, no more using the bathroom in peace again!
6. Picking up toys. This is one of my favorites. He has learned that anytime he puts toys in his toy box, Mommy will clap her hands and go "Yayyyy Logan!" He thinks it's hilarious, so he picks up ALL his toys. (and then proceeds to take them all out again!)
7. Reading books. He will sit and read his books over and over for a good 20 minutes, and in toddlerworld, that is an eternity! Dr. Alleman actually asked us while we were there if he did this, and he was very impressed when I told him yes. (He said he seemed very smart and attentive for his age!) He really likes his dinosaur book with the different textures and the bright colors in it.
8. Putting on his shoes! He knows exactly where his shoes go, and he loves getting them on his feet now! He even has started handing me his feet. I'm also excited to say that yesterday, he did his own velcro!
9. Brushing his teeth. I am a bad Mommy and for the longest time, forgot to brush his teeth, but we've been very good for the last few weeks to brush them. He is so good about it, I think it feels good on the ones that are coming in. He just opens right up and sits there drooling. It is quite precious!
and one more funny thing,
10. Every single animal, on TV or in real life, is a Doggie. It is the cutest thing. It could be a horse, or a bug, it is a Doggie. :)
It is amazing how much he's growing up, and how fast. I'm going to try and be a little better about writing here. So many times I've thought lately about writing, just a few minutes a day. There are so many things he does, like give me a hug and wave bye bye every morning when I drop him off, that I don't want to forget. I let this blog get to be about only the big things, but I want to remember the little things too. I'm going to try really hard to write at least a few times a week about the mundane. I need to for myself. I want to look back in five, ten years, and read all these things that made me laugh, made me frustrated, and made me smile. I don't want to forget the cute little voice that says "Hi" to me everyday, and I'm afraid I will.
I need to stop and smell the roses. I'm so busy with life, that I'm not taking time to enjoy it.
I graduate school in six weeks. Then, it's off to the "real world". It's hard to remember that I'm already there.
First, a very important update: Logan is just fine! We got news in August, after sending new biopsies off to Seattle Children's hospital that his tumors were in fact Fibrous Hamartoma of Infancy, and still benign after all! Then, the even better news came when the lumps started going down, and we realized it was just scar tissue that had built up quickly, not the tumors regrowing as we had feared! We just had a check up on Monday, and he's still looking great! No sign of tumors, and now we don't go back for six months! Dr. Gandhi said the longer we are out from the recurrence, the less likely they are to come back! Yay!
Logan had his 15 month check up last Friday with Dr. Alleman. He was 22 lbs, 11 oz and 31 1/2 inches long. He is at the 25th percentile for weight now and the 50th percentile for height. Dr. Alleman said he got a little skinnier just because he's walking and almost running, and just being generally more active now.
He is growing up so well! I can't believe how big my baby has gotten! He is such a little ham, and has such a funny little personality. He loves tickling Mom and Dad, and now he dances to the Mickey Mouse Clubhouse hot dog song! He has a whole routine he does! He stomps his feet and then spins in circles, and does it over and over, all the while saying "ah dog, ah dog!" It is the funniest thing.
He is in the process of getting all four of his one year molars. That sure has been fun. NOT. He hasn't been sleeping very well, so of course Mom and Dad are pretty tired too. But we are all surviving.
Some of his favorite things right now are:
1. Fans. He loves seeing fans.. ceiling fans, stand up fans, box fans.. it doesn't matter. Anytime he sees one if he can reach it, he'll go stand by it and start talking to it. It's a favorite passtime at Poppa's house, and we even call it Mr. Fan (and Mr. Vacuum too!). He holds entire conversations with them.
2. Logan-ese. His said language with the fans, we have no idea what he's saying. He will start repeating what you say though, especially if it is something like "Boogity boogity boo."
3. Hiding all sorts of food in his high chair for later. He loves to make little piles of food in his high chair so he can swing back by later and snack while he's playing! Or if it doesn't like it, he'll stick it next to his legs and then wiggle them very quickly back and forth so all the food goes out the leg holes. Or for the food he REALLY doesn't care for, he'll just dump it over the side of the tray.
4. Throwing himself back for his sippy cup. Our sweet little boy still hasn't learned how to sit UP and hold a cup, he must lay down to drink, so as soon as he sees his cup (even if its empty), he throws his head back and lays down. It doesn't matter where he is. He could throw himself down on Poppa's shoe, right at his high chair leg, right onto the hard wood floors, or, when he's feeling particularly cute, he'll grab a pillow first and then lay his head on it.
5. Opening doors. That's his new trick this week! We have the lever style doors in our house, and the little stinker has figured out how to open them! We better watch out, no more using the bathroom in peace again!
6. Picking up toys. This is one of my favorites. He has learned that anytime he puts toys in his toy box, Mommy will clap her hands and go "Yayyyy Logan!" He thinks it's hilarious, so he picks up ALL his toys. (and then proceeds to take them all out again!)
7. Reading books. He will sit and read his books over and over for a good 20 minutes, and in toddlerworld, that is an eternity! Dr. Alleman actually asked us while we were there if he did this, and he was very impressed when I told him yes. (He said he seemed very smart and attentive for his age!) He really likes his dinosaur book with the different textures and the bright colors in it.
8. Putting on his shoes! He knows exactly where his shoes go, and he loves getting them on his feet now! He even has started handing me his feet. I'm also excited to say that yesterday, he did his own velcro!
9. Brushing his teeth. I am a bad Mommy and for the longest time, forgot to brush his teeth, but we've been very good for the last few weeks to brush them. He is so good about it, I think it feels good on the ones that are coming in. He just opens right up and sits there drooling. It is quite precious!
and one more funny thing,
10. Every single animal, on TV or in real life, is a Doggie. It is the cutest thing. It could be a horse, or a bug, it is a Doggie. :)
It is amazing how much he's growing up, and how fast. I'm going to try and be a little better about writing here. So many times I've thought lately about writing, just a few minutes a day. There are so many things he does, like give me a hug and wave bye bye every morning when I drop him off, that I don't want to forget. I let this blog get to be about only the big things, but I want to remember the little things too. I'm going to try really hard to write at least a few times a week about the mundane. I need to for myself. I want to look back in five, ten years, and read all these things that made me laugh, made me frustrated, and made me smile. I don't want to forget the cute little voice that says "Hi" to me everyday, and I'm afraid I will.
I need to stop and smell the roses. I'm so busy with life, that I'm not taking time to enjoy it.
I graduate school in six weeks. Then, it's off to the "real world". It's hard to remember that I'm already there.
Tuesday, July 21, 2009
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.
________________________________________________________________
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
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
Thursday, July 2, 2009
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!!
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!!
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