Moving and Grooving

We are still here at the hospital. Yesterday was a big day for Samantha. Dr. Heare took all the dressing off of her leg and put her in a cast from the knee down. There is an actual hole in the cast so we can see the flap. She needs to watch it carefully when she moves to make sure it doesn't turn from pink to blue. Right now she can only lower her leg for 5 minutes or less.

Today she moved from the bed to the chair and is using the bedside commode. The most painful part of her leg is where they took the skin graph. It is pretty intense looking at her leg all beat up. For some reason this latest surgery is really hard for me to look at - I think seeing all her scars and bandages is visual reminder of what cancer does. She has scars under both breasts from her port and broviac. She has a big brown scar from the front of her pelvis around her hip ending at her butt cheeks. From the last post you can see how big the lower leg scar will be and she will have another long scar on her inner thigh and a 2x6 inch rectangle on the top of her thigh.

She has a small catheter placed under her skin so daily blood thinner shots can be given for the next 4 weeks. This medicine is necessary while she is bed ridden to prevent blood clots in her legs and stings like mad for the 3 minutes after she gets it.

She now knows exactly how tough she is now and she has the battle scars to prove it.

I talked with Jeremy today as well. He saw a doctor yesterday and his lung looked good so they capped him off but he was having trouble breathing and took it off for the night. This morning he capped it off again and has made it all day feeling good. He has an appointment with a specialist on Thursday and they will probably remove the tube then. He will also learn what needs to be done to make sure this doesn't happen again.

All Samantha has to do is feel comfortable using her crutches to get back and forth from the bathroom and we can leave. We only have 1 more episode of Gilmore Girls so I am thinking she may be ready to leave tomorrow.

Daniel took Isabella swimming tonight - if you have facebook - look for Jeremy and you can see the picture. When I am home I will grab it and post hit here...

I know it is only Tuesday but I am ready for the weekend already. Work is busy and as much as I think I will get done here at the hospital - the distractions are many so as usual - I am behind.

I haven't been able to see Isabella, Daniel and Jeremy since Sunday and I am missing all of them bunches! I bet you get tired of hearing that... :)

I'm sorry I didn't post any pictures tonight - I have been trying to convince Samantha that she should let me take a few to show everyone had great she looks - but you know 15 year old girls - no make up no picture.

I am pretty tired tonight so I am going to hit the sack.

Love to everyone!

One of Those Days

Pictures of Jeremy and Isabella today - Isabella is still in her jammies holding a someone else's glass and of course not looking at me as usual.

Every once in a while I have these days when I wish... The kind of wish where you get angry when you realize it isn't going to come true.

Sometimes they are big wishes - like Sam would never have had cancer or since she did that her surgery would have worked out the first time.

Sometimes I wish I would win the lottery and sometimes I just wish that I wouldn't have to chose between work and family at times.

Today I wished that I didn't have to chose between Jeremy and Isabella and Samantha...
I felt sorry for myself on the ride back to the hospital but by the time I got to Sam's room, I was back into my mom mode and not wasting time or energy wishing - just accepting the way it is right now.

Sam gave me the green light to go visit J and Izi for a couple of hours. Isabella must have missed me a little bit because she let me just hold her longer than just a sec - that hardly ever happens.

Jeremy and Isabella are over at a friends - Isabella is playing and Jeremy was helping Seth put together some sushi rolls for dinner. My visit with them was nice - I just sat back and watched them both. Jeremy's color is still good but he went in for an x-ray today and his lung still isn't completely inflated. He will need a couple more days to get back to normal. It is hard for him to just relax but he knows what he has to do.

Samantha is having a better day today. She is on oral pain meds now and soon will be able to get rid of her IV. She still has to lay flat but Dr. Heare said that tomorrow he will put her leg in a cast so she will be able to move easier. He told us the cast will have a window so we can watch the flap to make sure it stays healthy. She will be bedridden for the next 4 weeks, able to get up to go to the bathroom only. She has 2 more weeks of antibiotics and we are expecting the next surgery to be mid March. I thought we would be going home Monday or Tuesday but now they are saying Wednesday or Thursday. The doctors want to make sure Sam can move easily and learns her limits before leaving for home.

Right now we are watching the Superbowl, waiting for the cool commercials. I finally set up a facebook profile. Tommy with Samantha's cancer teen group went on and on about it and my friend Lindsey also told me I should - so I bit the bullet and did it. Now I just have to sit back and see if I can connect with any friends...

Samantha has promised to add me - so I will have at least one. :)

I guess I will end with a picture of Samantha's leg - the doctors are very proud - but a warning it is a bit graphic ...

The grid that you see is the skin graph and will eventually fill in - when everything is healed up it will look similar to a burn scar.

It will look a lot better than the earlier scars.

I hope I didn't freak anyone out - but I thought it was interesting.

I want to end by wishing my Grandma a happy birthday and I will try to call tomorrow.

Love to everyone!

What Lack of Sleep Can Will Do For You

Emotions go up and come down...

Last night was a rough night for Samantha. The nurses had to move her a lot and they were having trouble getting the pulses (equipment issues) - we were lucky to get 15 minutes of sleep at a time.

Then this morning around 8 am they turned off the epidural and started oral pain meds. Because of all the movement during the night, Sam used her pain button quite a bit. The pain doctors recommended a little bit of Valium to help keep her relaxed. It worked a bit too well.

This afternoon I tried to go home and check on Jeremy and I was going to pick up Isabella and bring her to the hospital with me. Just when I got home Chris called and said that Sam needed me back as soon as possible. Sam woke up disoriented and wouldn't let anyone touch her. So I jumped into the van and headed back to the hospital. Isabella went cross country skiing with the Waltons today and didn't get back in time for me to bring her with me. Jeremy assured me he was feeling well enough to take care of Izi.

I got back and Samantha calmed down a bit. She is feeling better, ate some dinner and guess what we are watching? Gilmore Girls - what a surprise!

It can be a bit hard when I really want to be in 2 places at once. Isabella was gone when I got home last night so I have not seen her in a couple of days and that is hard too. I know she is fine and had a blast hanging out with her friend Leah - but I am selfish. :)

Some really good news about one our our friends from here at the hospital - Taylor (her caring bridge site in over on the left) had her scans yesterday. Her tumors are shrinking!!! It brought tears to my eyes. Being back at the hospital and seeing the kids brings back memories and good news is always welcome.

I am going to finish tonight with a the news that Samantha is a star... There is a local radio station that does a radiothon every year to raise money for The Children's Hospital. They came to Samantha's teen cancer group to interview the kids and volunteers and put together a video that they have on their website. Here is the link: http://www.alice1059.com/pages/3743639.php. Take a look - Sam is so beautiful!

Night - Love to everyone!

Carl Got a Flat

Good news first - Samantha is doing well. They moved us up to the 7th floor out of ICU. She ate a bit tonight and was awake a bit more this evening.

Her right arm is a bit swollen from an earlier IV and compounded by the fact that there is still a clot in the artery the broviac was in. The doctors say the body will deal with it and that swelling should go down in a few days. They considered giving her blood thinners but that may hinder the free flap. For right now she is getting aspirin - then tomorrow they are planning on turning off the epidural and getting her on oral meds. Once she is managing her pain that way then they want to get rid of all the IVs and give her veins a break.

I am thinking we will go home on Monday or Tuesday...

Now of course things would not be the same in our household without a little bit of drama. Jeremy (aka Carl) called me this morning and from the tone of his voice I knew something was wrong. At first I thought it was Roxy - she was scheduled to have her surgery today. But no - Jeremy was calling me from the hospital. His lung collapsed again - it happened about 6 or 7 years ago. I forget the medical name for it - but last time we were told that it is common among young athletic men. It is even more common to happen multiple times. It so happened that last evening he was feeling out of sorts and having trouble sleeping. At about 3:30 am or so he knew it was the lung and called Damian. Isabella woke up and was a great helper getting dad to the hospital and also at the hospital. She was a mim nurses assistant. Jeremy is doing alright now - they put a tube into his lung thru his chest to help keep the pressure where it needs to be so the lung will stay inflated until the tear heals. Last time he needed to be in the hospital 4 days but this time they sent him home - the technology has improved leaps and bounds according to his doctor. He is on pain meds and is to rest until Sunday when he will go back in and they will cap off the tube and wait another day to make sure the lung doesn't collapse again. If it is good - then on Monday they will remove the tube.

Isabella is at a friends house for the night. I took off a couple hours from the hospital while Chris sat with Sam and went home to make sure he was alright for myself. His color is good, he is just moving a bit slowly.

I made him promise to call 911 if he had any problems during the night and to call me when he woke up tomorrow morning so I know he is ok. I hate that he is home alone - but he wouldn't come and stay with me in the hospital.

I always feel like we are just normal people - is there another normal family out there that has such an active life? If so - please let me know we are not alone!! :)

I got to talk with my friend Dianna today so I am feeling better about things all around. However, I am more sure than ever that I want to take a vacation - just a small one. What do you say Rena - maybe we should run away for a weekend to someplace warm and sunny - say.... California? Maybe a bed and breakfast in wine country?

I will start dreaming about it now....

I will update again tomorrow and let everyone know how Sam did coming off the epidural and how Jeremy is doing with his chest tube.

Until then - Love to everyone!!

Pink and Pulsing

Catch your attention? Pink and Pulsing describes the surgery site and this is good. So yesterday we were meeting with the doctors at around 5:30 am, getting a chance to ask questions about what would happen. Samantha hesitated a bit but then let her question loose. For the past month we have been talking about doing this 'free flap' down around her ankle. She was concerned that flap meant the skin would actually be flapping around...

We all had a good laugh and it reminded us how kids hear and understand things. Dr. Heare explained that it was called a flap because originally they would cut part of a muscle and flap it over to repair a damaged area. Hers is called a 'free flap' because now they can actually cut the muscle out completely and put it anywhere it is needed. He explained that this flap would be completely attached down by her ankle. Dr. Ozer took the muscle from the inside of her left thigh, then he attached all the important blood vessels to the muscle and covered it all with a skin graft.

Originally we were told that this surgery would be about 5 hours, but all in all it ran about 8. A very long day but also very successful. During the original limb salvage surgery she lost the posterior artery (the one that runs down behind and to the inside of the leg) because it ran right thru the original tumor. But the body is amazing and it started to re-grow and branch out. It was not at big as the other artery (the one that runs on top of the leg) but it was big enough to support the flap. This in itself was great news. It improves the success rate of the operation dramatically.

After the surgery Samantha was taken into intensive care. The reason for this is that the flap needs to be monitored very carefully for 72 hours. The first 24 hours are the most important. She has this huge dressing on her leg - from hip to toe. But they cut a tunnel down to the flap - if you look down you see this pink tender skin with a kind of mesh on top. Then the nurses have an ultrasound machine they lower onto the exposed site to listen for the pulsing of the blood. Both the pink and the pulsing are very important. Everything they are doing now is to encourage good blood flow all the way down to her toes. She is on an epidural because that medicine tends to enlarge the arteries, her foot has what they call a bear hug blanket - blowing warm air constantly on the leg. They also are really trying to keep Samantha's pain level low, because when you are in pain the arteries constrict. For the most part - Samantha has been sleeping. I think this is a good thing - she is relaxed and comfortable.

We made it thru the first 24 hours so the chance of survival (of the flap) jumped higher. All the doctors will relax a bit once we hit the 72 hour mark. I am thinking we will probably be in the hospital about a week - it all really depends on Sam and her flap... That sounded kind of funny.

We have had a couple of our favorite nurses stop by to check on her - all asking when she will get to move to the 7th floor. I also noticed a girl from Sam's cancer teen group here in intensive care. I believe she had a stroke and is battling an infection - this was a side effect of the chemo she is on... I see her mom - both Daniel and Samantha know her. I hope that she comes thru this - it has been a really long battle for her.

Let's see - Daniel is doing ok - his attitude has taken a turn towards the mellow, maybe it is because we are taking a time out from each other - lol. Isabella received a gold sticker today for completing her 'teen' level of math beads. She is very proud of herself! She was a bit upset tonight because she could not come back to see Samantha and she misses her. So we ended up getting a gift (A teen magazine with the Jonas Brothers on the front) to give to Sam and some 'not hot' Cheetos for her. She left happy as a clam.

Tomorrow our dog Roxy is going into surgery too - she tore her ACL and after searching long and hard we found a clinic that will repair it for a reasonable price. We are all super excited for this because the alternative would have been to put her down. She is in too much pain.

As I nurse Sam back to feeling good here in the hospital - Jeremy will be nursing Roxy back to health at home. Never a dull moment in the Layer house...

I know that after this surgery, I will feel a bit better. With each successful procedure we are closer to getting Sam walking again and all this will be worth it.

Take care - send good vibes -

Love to everyone!!

PS - ending with a picture of Sam all dolled up this past Sunday.

Long Week - Long Day

I don't think it was a full moon. Maybe I am wrong - I should probably check. This week has been long and hard and it is only Tuesday - jeez.

The weekend was nice for the most part - kind of short but we got to go visit some friends on Sunday. Monday hit us full force - work has been super busy and Samantha has not been feeling well. Daniel, I think is feeling off too.

I definitely know I am off. I am not on the same wave length as the kids lately - turning into one of those crazy moms that most teenagers talk about. I was hoping to handle it a bit better once we got to this point. My goal now is to thicken up my skin and relax a bit.

Samantha was having some issues with her broviac - we can not draw blood lately. The last time she received her antibiotic it burned a bit so the doctor had us come in and get an x-ray to check out the line. It seems that the broviac may be leaking a bit so the doctor will fix that during tomorrows surgery.

The good news is that since we were all ready at the hospital and getting x-rays they decided to do her chest CT scan and pelvic x-rays - both of which looked fantastic. These are the scans they were planning to do during next weeks Oncology 3 month check up. SAMANTHA IS NOW 1 YEAR CANCER FREE!!!!!! YAHOO!!!!!

Tomorrow will be a long day as well - but we will be one step closer to Samantha walking again.

In the meantime I will continue to wade thru the turmoil of teenage drama and pull all the humor out of the situations I can. If anyone has some good tips - please pass them along.

Night and love to everyone!

It's Been Too Long

Let's see - it has been 3 weeks since my last update - what has happened since then?

Well Jeremy rode a mechanical bull. We had an opportunity to see Robert Earl Keen at this country bar and as Jeremy was returning from the restroom, he eyed THE BULL. He was determined to try it out. I tried to capture his heroic ride on my camera phone, but all I got was this blur. The bull was going so fast it was hard. I think he may have made the 8 seconds but it is hard to tell - influenced as we were by the whiskey. :)

One of our weekends, we were invited up to Winter Park ski resort with some friends. The big kids were hanging with their dad so Jeremy and I decided - what the heck...

We had a really nice visit with our friends and then Sunday morning we were able to do some snow shoeing. Obviously Isabella can't snow shoe yet so she got to ride in a sled.

I really enjoyed getting out in the snow and fresh air. I have not been able to do anything like this in a while. I wish we could do it more often. Isabella laughed as dad tried to keep up on the downhills. She is an ace at balancing inside the sled. She really loved being outdoors as well - never complained about the cold once.

Other than those 2 weekends - life has been pretty normal. The kids are doing well in school and Samantha has been the super girl we have been used to seeing.

Last week we met with the doctor that will be doing the 'skin envelope' to repair the skin around Samantha's ankle that has been damaged by the infection. The doctor was confident and definitely knows what he is doing - which made me feel good. Samantha of course was in rare form when she met him. After a 2 hour wait to see him, he informed her that he wanted to remove her cast to look at the leg. Samantha hates to have the cast removed and it is especially hard on her when she is not prepared for it. She grilled the doctor for almost 20 minutes before he was allowed to remove it - she wanted to know exactly what he would be doing and why.

Basically, in order for this skin repair to work the doctor needs to find a good artery to redirect into the transplanted skin. Most people have 2 main arteries bringing blood to the foot. Samantha lost one of those because it was interlaced with her tumor. We know the other one is strong because her toes are nice and warm and pink.

Ideally it would be wonderful if the other artery ended close enough to her calf to use. Sam had to do a vascular study in order to determine if there is a good vein for the doctor.

We originally scheduled that for Wed. We arrived at The Children's Hospital thinking that Samantha would have to have a quick injection and a special x-ray. However, as we were walking back to the procedure room they started describing the procedure. It turns out that they sedate her and give her some pain meds then cut into an artery near her groin. They thread a catheter down the main artery into her left leg using a camera. Then they inject dye into the blood stream and take a fancy x-ray. This allows them to see all the blood vessels in her leg. After they finish up she has to lie completely flat for 4 hours so the artery can scab over.

We really were not prepared for it and again Samantha was very upset - she hates surprises. We got her all prepped for the procedure and at the last minute she cancelled it. We ended up rescheduling it for today. It worked out much better. Wed evening we had planned on celebrating Daniel's birthday with the uncles and we would have missed that, plus Samantha actually need to stay bedridden for 24 hours after so she would have missed a day of school and 2 important tests.

Samantha showed up today for the procedure all happy and compliant. We have to wait until the doctors see the study to get any result. Although from looking at it today, I didn't see another artery that was very big. I guess we will have to wait and see.

This past weekend was really exciting for the kids. Daniel and Samantha's dad and step mom had their baby - 2 weeks early and on Daniel's birthday. At first Daniel was a bit upset but after he saw the baby he is now pretty happy it worked out this way. It is a good connection between the brothers. Samantha is of course so excited and very helpful. The baby is so adorable - I am really happy for them.

Next week will be pretty busy, her surgery is scheduled for Wed morning and it will take most of the day. We have been told she will be in intensive care for a few days because they need to check her pulses in the foot every four hours.

This weekend - Isabella has a birthday party - we have an invite from some friends - the wash and house need to be taken care of since I will be gone for a while with Samantha.

She has to stay flat for most of tomorrow and I think Jeremy and I may try to catch a movie - we will see.

Work has been super busy for me - I should probably work a bit over the weekend but I am not really good at actually sitting down and doing that. The result will mean I will still be behind at work next week - a never ending story. :)

I know I always promise this - but I will try to update more often and include more pictures - until then - take care!

Love to everyone!