Scan Update

Tuesday morning we had an appointment with Dr. Pene scheduled for 10:15 to check Shad's counts and find out his scan results.  About 7:30 that morning I got a call, and recognized the number as the hospital.  I answered and the lady identified herself as Margie, Dr. Ignacio's intern.  She let me know that he wanted to meet with us after we met with Dr. Pene.  (Dr. Ignacio is the pediatric surgeon we have worked with previously.)  We knew that one of the options after scans was surgery, and this phone call pretty much guaranteed it was going to happen.

Shad and I got up and got ready, ate some breakfast, and then left to pick Trevor up from work.  Once we got him we headed over to the hospital.  We were there early for once, and of course that was the one time everyone was running a bit behind schedule.  We ended up meeting with Dr. Pene before Shad was accessed because Jo was busy.  He let us know what the scans showed, and his recommendations.  First off he told us that Shad's AFP before the last round of chemo was 30, and after that round of chemo his AFP was still 30.  This isn't necessarily bad, but it shows the cancer isn't responding as quickly to the chemo as it had been.  Next, he let us know that Shad had two spots that had taken up the contrast on the pet scan.  One was in his pelvic area (the one they had seen at the start).  It was a bit smaller and the urologist felt he could get it with surgery.  The other spot was a 4mm mass in his left lower lung.  It has been there for awhile apparently, but has never taken up the contrast so it hasn't been a concern.  This time it did take the contrast so they want to get it out.  It could be nothing, an infection, something else, or it could be cancer.  They plan to send it to be biopsied to find out either way.  Dr. Pene didn't know much else about the surgeries, and told us we would be meeting with the surgeons to get all that info.  They wanted to do the surgery on Thursday, but his counts weren't high enough.  We were kind of relieved because we really wanted to for sure be able to be home for Christmas.  The surgery is now tentatively scheduled for the week of the January 6th.

Next we talked to Dr. Ignacio.  He pulled up the scans and showed us this tiny little spot that is what they are concerned about.  His plan is to do thoracoscopic surgery (more info at the link), where they basically make three small holes and use a scope to remove the mass.  They are planning to take a small wedge out of his lung which will include the mass, and will then be sent to biopsy.  He let us know the risks, and the recovery.  Basically since the mass is so small they may not be able to find it with the scope.  If that happens he will try to feel it with the instruments.  If that doesn't work then he will have to cut his chest to visually see the are and feel/see the mass.  He will have a chest tube after surgery to allow time for the lung to heal and to make sure no air gets into the area around his lung.  He estimates he will have it in for about 3 days.  Because of the chest tube he will be in the PICU after surgery rather than on the regular pediatric floor.  When they remove the chest tube they will give him a local anesthetic, but he will be awake.  If his lung collapses once they pull it out then they will have to put it back in, but they will sedate him before putting it back in if that happens.  The biggest risks involved are if his lung collapses after the surgery, and the possibility of a nicked diaphragm which is not good.  The chances of that happening are small though.

After meeting with Dr. Ignacio we walked over and talked with Dr. Christman the urologist who will be performing the second part of the surgery.  We have worked with him before and really like him.  He explained how they will do the surgery for the mass in his pelvic area.  Basically they lay him on the table on his back, push his feet up almost into the birthing position, and then cut the section of skin between his scrotum and his anus (perineal incision).  They will go through the tissue and muscle there to get to the area where the tumor is and then remove as much of the affected tissue as possible.  This surgery involves a lot more risks.  It is possible that it could cause erectile dysfunction (could possibly be fixed at a later date (much later)), urinary incontinence (there are procedures to help correct it if necessary), damage to the rectum (would be repaired during surgery and shouldn't have long term effects, could possible have to temporarily redirect bowel movements to bag outside the body to allow time to heal).  This is definitely the more intense surgery, but if everything goes according to plan, it will have a much quicker recovery time than the chest surgery.

Right now the plan is to have the surgery the week of the 6th.  Once the surgery is complete we will be in the PICU for recovery for at least 4 or 5 days.  Once he is well enough to go home we will do so.  He will be limited a bit in his physical activity for a couple weeks after that.  Stay home, no school, no contact sports, no park trips etc.  Once he has recovered from the surgery he will have at least one more round of chemo.  Dr. Pene wants to see what happens to his AFP after surgery and then he will decide if he wants to do one or two rounds of chemo.

A long hospital stay

We have been trying to get Shad into the hospital for round 3 of his chemo for quite some time now.  We first went and got his counts checked on Halloween, fully expecting to come back later that night.  His platelets were too low however, and we were told to come back the next Monday.  His platelets were still too low, so we were told to come back on Thursday.  We went back on Thursday only to find that his platelets were going up,  but were still too low to start chemo.  The next Tuesday we returned and his platelets were finally high enough, but his neutrophils had dropped.  They weren't so low that he couldn't be out and about, but they were too low to start his next round.  The doctor was hopeful and told us to come back on Thursday.  We went back that day only to be told that his neutrophils were still too low.  His monocytes were up which showed that his neutrophils were recovering instead of continuing down, so he knew that he was improving.  We were supposed to go back the next Monday.

Saturday morning came and Trevor and I awoke to a grouchy and somewhat emotional boy.  He and daddy went and bought donuts.  They came home and we worked on cleaning up the house a little bit, and then I noticed that Shad was feeling hot.  His head is often times hot, so we debated if we thought he had a fever or not, but I was pretty sure he was abnormally hot, so we went in search of a thermometer.  Of course we couldn't find one, so I sent Trevor to the store to get a new one.  He came back a little while later, and Shad had a fever over 102.  I called the hospital to let them know we would be coming in (anytime he has a temperature over 100.4 we have to go in).  Luckily we already had our bags packed from thinking we were going to stay earlier in the week.  We gathered the rest of the things we needed and left.

We got to the hospital and they took blood for a CBC and also for a blood culture to check for infections.  They admitted us and let us know that Shad was anemic and would need a red blood cell transfusion.  The doctor also wanted to start him on antibiotics to fight off any possible infection.  The blood culture takes 48 hours to mature, so they start the antibiotics as a preventative thing even though they don't know what it is he is fighting.

Trevor went back home to get some things we had put in the wash before we left, and grab a few things we realized we had forgotten.  Shad and I stayed at the hospital and watched stuff on his ipad.  That evening the nurse started the first antibiotic.  It was supposed to run over 60 minutes, and then they would do the other one.  About 20 minutes in Shad started freaking out because his eye was hurting.  I checked for an eyelash, or anything else that could have gotten in it, but couldn't see anything.  Then he was crying because his feet were hurting.  I pushed the call button and the nurse came in.  I let her know that Shad was complaining about his feet and eye hurting.  About that same time he told us they weren't hurting anymore, they were itching.  She stopped the medicine because he was having a reaction to it.  He had what is called red man's syndrome where they person gets really red and flushed, hot to the touch, and itchy.  It is not considered an allergic reaction, just a reaction.  She gave him some benadryl and told me to let her know if he started breathing funny.  His lip started to swell up a little bit at this point which he didn't like at all.  The nurse left and I tried to keep him from scratching.  When he got to the point where I was worried he was going to break the skin on his head I called the nurse back in, and she gave him a wet washcloth to put on and help the itching.  He said that helped and cheered up after that.

Sunday was a pretty lazy day spent watching shows on the ipad, going for a walk, doing some crafts, and snuggling.  It was very uneventful, which are sometimes the nicest kind of days at the hospital.

Monday Dr. Pene came in and let us know that Shad's counts had all recovered, and so as long as his blood culture was negative then we would start pre-hydration that night, and chemo the next day.  We were happy about that, we were ready to get round three over with.  That afternoon Trevor and Shad had rest time, and I crocheted some hats people had ordered.  Shad didn't really sleep, but he needed a little bit of down time, he was being kind of ornery.  The blood culture did come back negative so we got ready to start chemo.

Tuesday Shad started his chemo about 10:15  That afternoon he took a nap.  The doctor said to keep going with the drug as long as Shad seemed okay physically (breathing ok, not complaining of headache or dizziness, going to the bathroom etc.)  His heart rate still went pretty low with this drug, but we pushed through it and got it done.  He seemed fine the whole time.  It was a long night for me though.

Wednesday Shad had the nurse that we don't really love, but we survived.  His first chemo didn't finish on time, so we didn't get started with his day two drugs until about 11:30.  The zoo came that day, but since Shad was getting chemo he wasn't allowed to leave his room.  He sat at the window and looked at the animals.  The zoo lady was really nice and brought them right up to the glass so he could see them well.  He did get to go right outside his door and pet the big dog, so he was happy.  That afternoon Trevor went home to do some laundry, and Shad and I went out to play.  We hadn't been allowed to go out much because at first they didn't want him exposed to anything, or to expose anyone to anything he might have.  Then he had the 24 hour chemo and wasn't allowed to go out.  We played chutes and ladders and finding nemo go fish.  We also played a dice game I had brought from home and colored.  He played with some of the other toys, and then when his battery started getting low we went back into his room.

source: naval medical center san diego facebook page

Thursday we did chemo again in the morning.  He was starting to feel more nauseous, and didn't really want to go out and do much.  It was raining off and on all day.  We decided to go for a walk that afternoon, but by the time we got outside it was raining really hard.  We walked a little ways (where it was covered) and then went back in.  We stopped at the Redbox, and Shad picked the movie Planes.  We waited for daddy to get back, and then they watched it together.  Shad said it was boring, and Trevor wasn't a fan either.  That night we had a short dance party while we waited for the nurse to come in and do a dressing change on Shad's port (the sticker was falling off).

Friday was a pretty uneventful day.  We got more movies from the Redbox, The Croods, and Epic.  Shad loves The Croods, it is pretty cute.  Epic was ok, but he was happy just to watch it once.  That evening I was snuggling in bed with him and noticed he felt warm again.  The nurse came in and took his temperature.  He had a low fever, which meant they had to start another blood culture and do some other blood work.  They also had him do a chest x-ray because he had had a cough the past few days.  We waited for the x-ray place to call for him, luckily they called pretty quickly.  The nurse let him ride in a wheelchair which he thought was pretty awesome.  He did great for the x-rays, and the technicians seemed competent and worked well with him.  They didn't have to do any repeats because he held so still, and did just what they asked.  Everything looked good from those.

The next morning he was complaining of belly pain.  Since he had had the fever they were being extra cautious, so they sent him to get an abdominal x-ray.  It showed that he had a lot of stool and gas, so they started him on Miralax.  That seemed to help and he started to feel better.  He threw up once or twice this day.  Bishop and Sister Hadley came to visit that night, which was nice.  He loves having visitors.  As they were leaving the nurse came in and said that they had just realized he needed to be reaccessed that day.  We went in the treatment room to get that taken care of.  He was not happy about it at all.  They took the sticker off, took the needle out, put a new needle in, and then put a new sticker on.  He was complaining that it hurt as soon as they finished.  We thought he was just sensitive because they had poked him without any numbing cream, and told him he would be all right.  About an hour later we were getting him ready for bed and noticed that the area around his port was really red and beginning to get puffy.  We called the nurse in and she said that they were going to have to reaccess him, just to make sure the needle was in right.  The doctors came in and took a look and decided they thought it was just an allergic reaction to the sticker, even though he has used that same sticker tons of times before.  We ended up taking it off, putting some of the numbing cream on, and then putting another new needle in a while later.  Once that was done Shad finally got to go to bed.

Trevor took the sticker off the second time because the nurse was so busy

Sunday Shad watched the Redbox movies we forgot to take back one more time.  That afternoon we dragged him out of the room to go on little walk.  It was a beautiful day, but he was cold.  Finally we got to a sunny spot and he sat down to warm up.  Pretty soon he was laying down on the bench.  He was loving being outside, and kept talking about the nice sunshine.  It was pretty cute.

Monday we finally got to go home.  I don't know why, but those two extra days at the hospital seemed like forever.  We are enjoying being home, eating our own food, sleeping in our own beds, and of course playing with our own toys.

Check up, Audiology, and the zoo

Yesterday was a busy day for us.  Shad had an appointment at the clinic to check his counts at 8:45.  We got there, got a label for the 12 hour urine collection we had done, and hurried that up to the lab.  We got that done, and then went back to the clinic where we did his vitals, and then went in Jo's room and he got accessed.  He is getting so brave, and didn't even cry at all during the poke.  She took his blood, and sent that up to check his counts.  We went back out to the waiting room, and the doctor was with us shortly.  He checked Shad over, and we went over the plan for admission today.  He wanted us there by 9:00 tonight which was fine because we still got to go trick or treating.  He said we could go ahead and get him deaccessed, and if anything came up in the lab work that would change things he would give me a call.  We went back in to see Jo, and she took the needle out.  As we were walking out the lab results came.  The corpsman handed them to Jo, she took one look, and said to wait there she would be right back.  She went into the doctors' area and came right back out.  Apparently his platelets were low, he had been at 70 something on Friday, and now he was at 26.  Everything else was still good.  We had to reaccess Shad so they could get a little bit of blood for a type and cross.  We were told we wouldn't be starting chemo as planned, and to come back on Friday morning to check his platelet levels.  They would have platelets ready in case he needed them.
After that we had about half an hour until his audiology appointment, so we headed down to McDonalds to get some breakfast.  Shad wanted "a shaushage sandwich like grandpa gets" and an apple juice.  We got our food and sat down to eat.  As soon as we were done we headed up to audiology.  Ms. Nicole was happy to see Shad, and we were taken right in.  They tested his eardrums, and then he did the beep tests.  He is supposed to raise his hand every time he hears a beep.  At first he had these big headphones on.  After a little bit the audiologist came in and said she wanted to try it with piece that goes in his ear.  His left ear wasn't doing so well, but she thought it might be because his ear was getting squished.  She changed it over and ran the test again.  Luckily she was right, and everything was fine.  He has gone down a tiny bit in the highest range in the left ear, but she said it is not something to be concerned about yet.  I took some videos because I thought he was so cute, he was focusing so hard.  The first is him repeating words that she said to him, the second is him raising his hand.  The room we were in was pretty small, so it was hard to get far enough away to see him really well.

After we finished up at the audiologist we headed over to the zoo where we met up with Abigail, Kate and Mandy.   We walked around a lot and saw some bears, monkeys, orangutans, elephants, camels, a jaguar, and some other things.  Some of the highlights included climbing on all the statues, in the koala tree, and riding Skyfari.  

                      

Tuesday check up

Last Tuesday Shad and left our house about 8:45 to pick up Kathy and Karen from the airport.  We only had a little while before we had to drop them off for their cruise and get to the hospital for Shad's check up.  Luckily we did have a little bit of time to visit with them while we did a Starbucks run, and then sat in the car to catch up.  We figured out where to drop them off, and then Shad and I were off to the check up with the oncologist.  I knew that Shad was low on something (either blood, platelets, or both) because of the way he had been acting.  He was overly grouchy and would get angry really easy.  He was a little more tired then usual, and a bit pale, but not to a point of being really concerning.   They checked his vitals, Jo accessed him and drew his blood, and then we waited for the results.  After waiting for a few minutes, the oncologist came and got us.  We went into his office and he checked him over.  After checking Shad out, he called Trevor and I closer, and told us to look at what anemia looked like.  He pulled down Shad's lower eyelids, and they were very light.  He shined his light into Shad's mouth and showed us the inside of his cheeks which were also very pale.  He said, now we wait to see how bad it is (if he would need a transfusion or not).  While we waited for the blood results the doctor let us know what the plan was for the upcoming week.  We would see if he needed transfusions that day, and then would come for another follow up on Friday to check everything before the weekend.  He wanted Shad to do a check in with the audiologist to see how things were going with his hearing before the next round, as well as another 12 hour urine test to make sure there is still good function there.  He also let us know that we were going to do one more round before we do the next set of scans.  We chatted a bit longer, and then a corpsman brought the lab results.  The doctor took one look and immediately was like, well, he needs blood and platelets, and we will be admitting him to do the transfusions right now.  We had expected he would need something, so it wasn't a huge surprise.  We were admitted to the pediatric floor for the afternoon, and told we could leave once the transfusions were complete.  It took a couple hours to get the blood products ready for him, and then we had to wait several more for them to transfuse (it takes 4 hours for red blood cells, and 30 minutes for platelets).  We ended up being there for about 9 hours total.
When we got to the floor we noticed that Shad's friend Janae was there again, so I stopped by to chat with her mom and see how they were doing.  It turns out Janae had had a seizure (or something like it) at the store the day before and had been brought in by ambulance.  Her mom was very stressed by the event, and was having a hard time.  I guess that Janae had turned blue, and was not breathing for a bit.  No one at the store had helped, and her mom was very upset.  She said that she thought she was gone, but thankfully she came out of it.  I was kind of glad we were there because she had no car, and no clothes.  I was able to give her a ride to the store to at least get a few clean things, and some food.  It was really good for me too, it is nice to have someone to talk to who is really able to understand what I am going through.  We talked about death, grief, making the most of each day, memories and treatment plans among other things.  It really was wonderful.
Unfortunately I was a slacker and didn't take any pictures this day, but here is a pic I never posted of the last time Shad got platelets, we were in a room with a bed this time, but you get the idea.

Round 2, the rest

About 8:00 on Saturday morning I finally dragged myself out of bed and got going.  It was a pretty lazy morning, I snuggled with Shad for a little bit and we watched his ipad.  The nurse came in and started his next chemo about 11:00.  He started feeling yucky a lot sooner this time around, and didn't eat much for days 2-7.  Once his chemo was done for the day grandma and grandpa worked on getting him to eat something and let me take a little nap.  Once he finally ate a few bites we were able to go out and play for a little bit.  There was another little boy there who definitely wanted to be all up in our business.  I like kids, but this one rubbed me the wrong way.  He was a bit annoying and kind of rude.  His mom wasn't feeling well, so she was resting in the room.  Anyway, he and Shad played for a while before we all got sick of him and headed back into the room.  We must not have done anything too exciting the rest of the day because I don't have any pictures, and I don't recall anything else.

I made this for Shad, and he thought it was pretty awesome!

Sunday Shad woke up excited because daddy was coming back that day.  Grandma and grandpa once again worked on getting him to eat something while I took a shower and got dressed.  They offered item after item and he continuously refused.  Finally grandpa offered bologna off of the sandwich he had brought for lunch.  Shad perked up and agreed to it.  He ate two slices of bologna before we ran out.  All I know if that I was nauseous, bologna is not what I would pick to eat.  Chemo started again at 11:00 and went for 2 hours.  After chemo I began trying to get Shad to get dressed and go for a walk or go out and play but he wasn't too interested.  Finally he decided that he would walk downstairs to watch for daddy once he was on his way.  When we got back from that I realized that my military id which had been in my pocket no longer was.  Trevor and I went in search of it, and to ask at the main desk if anyone had turned it in.  Luckily someone had turned it in to security, so that was good.  We went back upstairs, Shad did a puzzle, and then we played Disney Uno.  After that we went back in the room and got ready for dinner.  I think you can tell from these pictures that Shad is not feeling well, he definitely was not his usual self.  Prior to going home the nurse let us know someone was going to be leaving one of the bigger rooms the next day and we should be able to move over there.  We were pretty excited about that.  I helped get Shad in bed, and then I went home with my parents to sleep for the night while Trevor stayed with Shad.

one of the nurses gave him a coloring book with tattoos

you can tell he is not feeling too great

a birthday present from grandma doggies brought out his smile

as did playing legos with daddy

Monday my mom, dad and I went back to the hospital.  Trevor let us know that Shad had thrown up a little bit that morning.  I was happy to see that we had one of our favorite nurses, and she had decorated Shad's board really cute.  Once Shad's chemo started my mom and I went to run some errands.  I had decided to make some hats for some people we had met at the hospital, their 2 year old had been diagnosed with leukemia the week before, and so I needed to get some yarn for that.  We were also looking for some fabric for a project I am conjuring up in my mind.  I couldn't find what I wanted for that, we will see if ever happens...  We picked up some lunch on the way back to the hospital.  While we were gone the other room had opened up, so Trevor and my dad had moved everything over, and got the new room all set up.  We ate lunch, played Headbandz, and then Shad played on his ipad for awhile.  He wasn't feeling very good, but we wanted him to get out of bed for a bit so we said we should get dressed and go for a walk.  He flat out refused multiple times.  Finally, I asked if he didn't want to for a walk, or if he didn't want to get dressed.  He said he didn't want to get dressed, so I told him he could go in his pjs.  He was more than happy to go after that.  We went up to the top floor and watched for airplanes for awhile, and then we went down to the main floor, walked around outside a little and then went back to his room.  That pretty much wore him out, so he got in bed and hung out there the rest of the evening.

Tuesday Trevor had duty so he had to go to work.  He left bright and early, luckily Shad and I were able to sleep longer.  Shad was feeling really yucky, but he was excited because his friend Janae was coming for chemo that day, and he had a gift to give her.  He just wanted me to snuggle him in bed for awhile while we watched a movie.  When grandma came she and he snuggled in bed for a bit.  While Shad had chemo grandma and grandpa put up the decorations that people from grandpa's work had made and sent for Shad.  He thought they were pretty awesome.  After chemo Shad got dressed so he could walk down to Janae's room and give her the gift he got for her.  (sidenote: Janae loves One Direction and has several posters that she hangs in her hospital room, Shad has seen them in the past.  When we saw some One Direction things at Wal-mart he got very excited and said, "look mom, it's Janae's boys!"  We bought her a little stationary kit that had pictures of them.  Later we saw a One Direction bear at Build a Bear, so we had to buy that for her as well.)  As he was getting dressed he threw up some more, but he wasn't going to let that deter him from going to see her.  We walked down, and he gave her the present.  She was very excited, as we had hoped.  Her and Shad hung out for a bit watching Star Wars on the ipad, and then decorating with her new One Direction stuff.  After a bit Shad started looking a little worse for wear, so we headed back to our room.  Shad rested on the bed, threw up the apple he had eaten, and then just felt yucky.  He threw up again, and so his nurse gave him some benadryl which knocked him out.

Wednesday Shad seemed to be feeling a little better in the morning.  He played with grandpa for a while throwing his stuffed animals back and forth.  After he got tired of that he and daddy took turns playing games on the ipad, and watching movies.  We also played some more Headbandz (I think we played this at least once a day).  We were all happy when the chemo was finished...done with round 2.  That afternoon my mom and I went to the temple, it was really nice, and exactly what I needed.  We came back and I finished working on my project I had started on Monday.  Luckily I was able to finish late that night!  There was a little bit of throwing up this day as well.

Thursday Shad seemed to be feeling much better.  He woke up and drew some pictures for Janae.  The chemo makes her really sick, and she was feeling pretty down.  He was bouncing around, we were able to unhook him from the fluids and take out the needle a little while before we left.  We packed all of our stuff up and waited for the magic time.  They didn't want him to have the Neulasta until that evening, so I agreed to do the shot at home.  We walked down to Janae's room and Shad gave her the pictures he had drawn.  It is great to watch both of them light up when they see each other.  I wrapped up the hats that I had made, and found a card that could go with them.  I hope they helped brighten that families day a little bit.  I can not imagine living at the hospital for weeks on end with a two year old and a 3 month old.  Finally it was time to go home, so we gathered our stuff and headed out.  Shad had been doing well that morning so we weren't too worried, but about halfway home he started looking a little ill.  We asked if he was ok and he said yes, but a few minutes later he threw up.  Luckily there was a towel sitting next to him, and I was able to pull that over on him so he and the car seat stayed pretty clean.  We got home and relaxed and enjoyed being home.  Shad threw up again a little bit later that night.  We put him to bed and hoped he would be able to sleep it off.