So long

So this happened Tuesday...

That is Shad's hair in case you were unsure why I was holding a huge hairball in my hand.  I may have shed a tear or two, but Shad thought it was hilarious.  He would rub his hand over his head, pull it down covered in hair, and just laugh and laugh.  We were nervous how he would react, so I was glad it didn't seem to phase him.

When daddy got home that was followed by this...

We broke the rules a bit and went to Costco for some dinner, and then to Sonic for a treat.  

This is how it looked tonight...

Daddy says he is going to shave the rest really short in the morning so it won't look quite so silly.

And so it begins...

Sorry I didn't post after our meeting with Dr. Pene on Friday the 13th.  I started to write multiple times, but just couldn't find the words to get in down on paper.  It was decided that we would start with the low dose chemotherapy for 4 rounds, and see how his cancer responds.  He will have 2 rounds, scans, and then 2 more rounds.  He let us know that we would start the next Monday the 15.  Although we knew chemo was going to happen, I think it was still hard for it to be so sudden.  We were happy to have the weekend to get ready.  Trevor was supposed to have a school all week, so I asked my mom to come so that I wouldn't have to spend all day at the hospital by myself.  She agreed and planned to drive out Monday morning.

Monday started out with the final load of laundry, mom packing, and Shad playing.  We were lucky enough to have a playdate that morning.  It was wonderful.  I loved spending some time with some other moms in the ward, and Shad loved running around and playing with the other kids.  We are not sure how much he will be able to be with friends during the upcoming months, so I was glad he had the chance that day.  After the playdate we came home, Shad went to rest time, and I finished gathering things and packing for the hospital.  About 3:00 my mom arrived, I opened the door, and she walked in.  I gave her a hug, and then out of the corner of my eye I saw somebody approaching the door.  It kind of freaked me out at first, but on second look it was Jayce.  I was happy to see him, it has been forever since he has been here, and we have missed him.

Monday evening we reported to the hospital.  We were told to be there by 7:00, and we walked through the doors at 6:59.  I found it interesting how familiar and right it felt.  2 east has truly become our home away from home.  We were pointed to our room, given paperwork to fill out, and told to settle in.  Shad of course wanted to go out and play with the toys, so that is what we did first.  Eventually they accessed his port, and got him hooked up to fluids.  He had to have so much pre-hydration before they could start the chemo, he also had to have some steroids to help prevent an allergic reaction to the first chemo.  About 9:30 we got him in bed and began to settle in ourselves.

Tuesday morning they started his chemo at 11:00.  The first drug he had was Taxol, which he hasn't had before and  so they had to monitor him pretty closely to see how he would react.  That drug ran for 24 hours.  While the chemo runs he has to stay in his bed, no going out to play, or going on walks. That was rough for him, but we were glad grandma and Jayce were there to help keep him entertained. We were also grateful for a friend that sent a care package with grandma filled with fun things for Shad to do.  His favorite was a Jake and the Neverland Pirate duplo set.  When the chemo first started he was angry, I am not sure why, but the way I see it is it was sinking in for him that this was all going to be happening again.  He cried and yelled, and glared for a good little bit.  Finally grandma offered to go to McDonald's and get him an ice cream cone, he said that would help, but only one person was allowed to go.  Jayce tried to sneak out and go with her, but Shad noticed and was yelling out the door, only one, only one, so Jayce came back.  Luckily he decided to take a nap in the afternoon, and woke up in a much better mood.  The day ended with him and Jayce playing Wii and snuggling in the bed.

Wednesday he finally got to be done with the Taxol, and then immediately started the next drugs.  First was Ifosfamide which ran for an hour, followed immediately by Cisplatin.  He has not had the Ifosfamide before, and the Cisplatin is one of the drugs he had previously.  He tolerated them both very well the first day, and as soon as they were done he was ready to go out and play.  As we were getting ready one of the therapy dogs came by, and so we got to pet her for awhile.  Shad loves the therapy dogs.  This one is named Tally.

Honestly the days in the hospital tend to run together.  The rest of our days were filled with chemo, playing toys, going for walks, games of Candyland, movies with our friend Janae, throwing up, eating, not eating, and millions of trips to the bathroom.  The following pictures depict a little bit of what the rest of our week looked like.

I love this picture, you can totally see how much these 2 love each other! 

Trevor and I went for a walk to a rose garden while Shad watched
 a movie with his friend Janae and her mom Linda

this little girls sister was sick, she and Shad loved playing together
on the days that they were both there, at one point she was like can I have
a hug, and as they were hugging he yelled, "I love having a friend" it was
pretty adorable.

And so as not to seem ungrateful I have to post some of the many blessings that we received this week. 

• my visiting teachers bringing meals to the hospital twice this week
• car problems that began Friday the 13, which ultimately ended up needing a new transmission, totaling thousands of dollars, ended up being completely free
• texts and phone calls from friends
• friends for Shad at the hospital
• gifts from friends
• my mom and Jayce being here
• Trevor getting extra time off of work
• nurses who love my baby and treat him like he is their own
• prayer
• priesthood blessings

Inner Peace

This was originally a post that I began to write in April, it had been in my heart since November, and as I started writing, the words literally rushed out, I couldn't type fast enough, until suddenly, they stopped.  There was nothing left.  I filed it away as a draft, fully intending to come back to it at a later point, to finish it, and to post it.  That time never really came, until now.  When we were told Shad's cancer was back I realized that the sense of peace I had felt the first time wasn't there.  I began actively searching for the same sense of peace.  As I was searching, my mind reflected back upon this unfinished post.  I pulled it up on the screen and read through it and immediately the peace rushed back over me.  The original post is still unfinished, I still have no words to finish it, but I realize now it wasn't meant to be finished, our journey isn't finished.    The following is that original post:

From the very beginning of Shad's cancer diagnosis I have had this calm peaceful feeling.  In my mind I call it inner peace...I picture that part from Kung Fu Panda 2 when Po is finally able to come to terms with his past and feel peace, the Peacock is shooting the cannon balls at him as fast as he can, and he  catches them and throws them back.  That's kind of how this journey has been.  One thing after another has been thrown at us... scary things that could have destroyed us if we had let them.  But, we didn't let them, we caught them and threw them away in a sense.  Sometimes they left a mark, and sometimes they threw us around a bit first, but peace was always able to prevail in the end.  

http://www.youtube.com/watch?v=HZ-DypRhHj8 

Being pulled in a room by myself to be told that my child had cancer... this first diagnosis was pretty bad, but I think I had prepared myself for it.  Call it mother's intuition, being a hypochondriac, paranoia or whatever you want, but I already had a feeling that my child was pretty sick, and cancer was one of the first things that came to my mind.  When the doctor told me that fateful day, he was only confirming what my heart already knew, and because of that I was able to already feel calm about it.  Don't get me wrong I cried, I was scared, but at the same time I knew that things were going to be okay.  Okay might mean that he beat the cancer and went on to live a happy, complete life.  Okay might mean that he beat it only to have it come back at some later point.  Okay might even mean that he couldn't beat the terrible disease and would die.  Somehow I knew that no matter what happened everything would be okay. 

On to day two, the doctors sedated Shad and took him to do an extensive round of tests.  They wanted to see exactly where the cancer was and wasn't.  Trevor, Casey and I were sitting in his room waiting for him to return when Dr. Clue came in to let us know that it was in his back, compressing his spinal cord, and he was going to do emergency surgery.  He let us know that it might be too late, and Shad wouldn't be able to walk again, among other things.  As any dreams that we had for him began to fly out the window, the peace I had been feeling tried to go right along with them.  Then, the doctor told us  that he had children at home and with those simple words the peace came flooding back.  I can't really explain it, but somehow that simple statement brought comfort and I knew that he was going to do the very best he possibly could (I know that someone without kids would have done their best as well, but this is what comforted me in that moment).
Once the results of the MRI came, we found out that Shad had been having trouble going to the bathroom because his urethra was blocked by the mass, and were told that the nerves may have been damaged, and he may never be able to go to the bathroom on his own again.  This wasn't the worst discovery for me...people can survive with permanent catheters.  There was still a little bit of fear about our sweet boy possibly being teased or excluded once other kids found out, especially as he got older, but the peace came this time in the realization that it might be hard, but he could survive.
Then, the waiting game began.  We waited to find out what kind of cancer Shad had.  We waited to see if he would be able to walk.  We waited to get a brace so we could get him out of bed.  We waited to see if he would begin to pee out of his penis.  We waited to start chemotherapy, we waited and waited and waited.  

It is as if  Heavenly Father knew that I would need to be reminded of how I felt in those first few moments at some future point in time.  That time is now.  I am so grateful that I followed the promptings of the spirit to write these thoughts down, because they have made a difference in my life today.  It helps to realize that when things looked so bleak, I felt peace, and I know that I can feel it again.  I do feel it again.  I feel prompted to post it, even though unfinished, maybe someone who reads it needs the same reminder.  The Savior is aware of our trials, he loves each of us.  We can have peace in our lives, no matter what happens, if we trust in him and seek to follow the commandments.  I will leave you with the following quote from Elder Quentin L. Cook's talk Personal Peace: The Reward of Righteousness.  "Peace comes from knowing that the Savior knows who we are and knows that we have faith in Him, love Him, and keep his commandments, even and especially amid life's devastating trials and tragedies."

Most recent update

My mind is a rush of thoughts, emotions, and impressions right now, but because I know there are a lot of people out there wondering about Shad and the rest of our family, I want to get this update posted as soon as possible.  Hopefully it will make sense.  First a picture I am sure many of you saw on facebook, but it makes me smile.

We had our follow up with Dr. Pene this morning from the scans that Shad had last week.  It wasn't great news.  They have found where the cancer is growing.  It is in his pelvic area again, running along the right ilium in the front (I believe, I should have taken notes, but I was just trying to process at the time).  It runs along the bone, and down into the base of the penis.

With that figured out we move onto treatment options.  Option 1 being radiation.  We will not be pursuing this option at this time.  There are big risks/side effects involved, and there are other options to pursue first.  One of the main things the doctor mentioned, is that if they do radiation to the right side of the pelvis, it will stop growing.  In a 23 year old this is not a big deal, in a three year old, obviously it is a huge deal.  That is far, far on the back burner for now.

The second and third option kind of go hand in hand.  They are surgery and chemotherapy.  We will not have one without the other.  The only unknown in relation to that right now is which order they will be in (if we do chemo first there is the possibility of not needing surgery, but that is unknown.)  We are waiting for the urologist that we have worked with to look at the scans and offer his opinion.  He will be back from leave, and will talk to Dr. Pene today or tomorrow.

As far as the chemotherapy, there are two ways we can go, the first is low dose chemo (which is what we have done already) but changing up some of the drugs.  The other is high dose chemotherapy with stem cell transplant.  This involves harvesting stem cells from Shad, freezing and storing them, giving high doses of chemotherapy, and then once chemo is finished, putting the stem cells back in through a transplant.  Naval Medical Center can not do this treatment, so would have to work in partnership with another hospital that does do it.  Rady Children's here in San Diego does it, but they have to agree to take Shad on as a patient, and I am not sure what that entails at this point.  If they won't agree to it, then we go somewhere else that will.  We have found out that Phoenix Children's does the procedure as well, so that would be our second choice.  Also Primary Children's in Salt Lake may also be an option.  Dr. Pene is trying to talk with some other doctors, ones who specialize in germ cell tumors to get some opinions.  He will do that this week.  We will be meeting with him again at the beginning of next week.

Something you may not realize is that this kind of cancer (extra gonadal germ cell tumor) is very rare. Only accounting for 1 to 4 percent of all germ cell tumors.  Of that 1 to 4 percent it is even more rare to see it in young children.  It is more commonly found in teenage and early twenty males.  Of that small portion of children who get it, there is even less who have the cancer recur after getting rid of it. Because of this there is no standard treatment from this point forward.  That is scary.  Of the people who have this kind of cancer recur approximately 35% survive.  I know that number could be worse, but it seems like such a small chance, it is hard not to worry.  But, he has beaten the odds before and we know, if it is God's will, he can do it again.  I have faith that He can work miracles, sometimes it is the miracle of healing, and other times the miracle is in our knowledge of eternal life, and of eternal families.

Please pray for us, pray that our minds will be clear as we make these hard choices for our baby. Pray that Dr. Pene will be able to find the information that he needs to help him (and us) make informed decisions.  Pray that we will have peace as we come to terms with the what the upcoming months will bring for Shad as well as for our family.

I want to leave off by saying that there is a word that has been on my mind a lot lately.  HOPE.  To me hope goes hand in hand with faith.  I do have hope, and I do have faith.  I have been wearing this bracelet I got for my birthday to help me remember to have hope.  I found this quote that I like, and I will leave you with it.

"Hope is one leg of a three-legged stool, together with faith and charity.  These three stabilize our lives regardless of the rough or uneven surfaces we might encounter at the time...Hope has the power to fill our lives with happiness...Hope is a gift of the Spirit.  It is a hope that through the Atonement of Jesus Christ and the power of His Resurrection, we shall be raised unto life eternal and this because of our faith in the Savior.  This kind of hope is both a principle of promise as well as a commandment, and, as with all commandments, we have the responsibility to make it an active part of our lives and overcome the temptation to lose hope.  Hope in our Heavenly Father's merciful plan of happiness leads to peace, mercy, rejoicing, and gladness.  The hope of salvation is like a protective helmet; it is the foundation of our faith and an anchor to our souls.

The adversary uses despair to bind hearts and minds in suffocating darkness.  Despair drains from us all that is vibrant and joyful and leaves behind the empty remnants of what life was meant to be.  Despair kills ambition, advances sickness, pollutes the soul, and deadens the heart.  Despair can seem like a staircase that leads only and forever downward.

Hope, on the other hand, is like the beam of sunlight rising up and above the horizon of our present circumstances.  It pierces the darkness with a brilliant dawn.  It encourages and inspires us to place our trust in the loving care of an eternal Heavenly Father, who has prepared a way for those who seek for eternal truth in a world of relativism, confusion, and of fear." - Dieter F. Uchtdorf The Infinite Power of Hope

Results round 1

Thursday morning I woke up anxious to hear the results from the ct scan.  I was kind of hoping that they would be able to see something from this scan, then we could know exactly what we were dealing with and get started on getting rid of it.  I hoped Dr. Pene would call early, but knew that hospital time is never really "early".  He had to wait to get the results from the people who analyze the pictures, so it wasn't really up to him.

I got up and got Shad and myself ready for preschool, I had volunteered to stay and help for about an hour that day.  We went to school, and Shad got right to work painting.  I got to help all the kids wash up when they were done, and then clean all the paintbrushes and paint containers.  Ms. Caroline and I then worked on creating some binoculars so that the kids could go on a whale hunt later that morning.  Shad was so impressed with my skills, and told me thank you for making these binoculars about 100 times after I picked him up later on that day.  It was pretty cute.  After the binocular making I helped clean up all the toys, and then left.  I came home and loaded the dishwasher.  After that I read through some of the stuff for my lesson on Sunday.  I left a little bit early to get Shad from school, because I had to be somewhere at 1:00.

After picking Shad up I dropped him off at home with Janaya, and then went to my visiting teaching lunch at Olive Garden.  The ladies all wanted to know if I had heard from the doctor yet, which I hadn't, and then asked some questions about Shad that I mostly didn't really have answers to.  It was nice to visit and have something to do beside sit around and hope the doctor might call.  As I was leaving Dr. Pene called and let me know that they didn't see anything in the ct scan.  The next words were, but the AFP is real (they had run it again to make sure it wasn't a fluke).  This means that the cancer is definitely in his body somewhere.   He let me know that we would need to schedule the PET scan for the upcoming week.  He also reminded me that he would be leaving on Friday and would be gone until the 5 of August.  He said that right now there are three possibilities that he sees.  One is that they will see something in this next scan, and will be able to do surgery to get rid of it.  He has already let the surgeon know that could be coming, and they would do it before Dr. Pene returned.  Two is that they will not see anything to remove, and will just continue to monitor to him pretty frequently.  Three is that they will just start treating him blindly, which means that they won't necessarily see anything, but will begin chemotherapy to get rid of what they know is there somewhere.  If that ends up being the choice they won't start that until he gets back.

Pretty much we are still just in a waiting game.  We are hoping that something shows up in the PET scan so that we will know exactly what we are dealing with.  Here is a funny picture of Shad to end this post.

Cancer SUCKS!

Monday morning we had a follow up meeting with Dr. Pene accompanied by blood work.  Shad had scans on July 5th, so this appointment was mainly to get the results of his scans.  Every time we go in they check his alpha fetoprotein, this is one of the main markers for his kind of cancer.  The only time that number goes up is if there is cancer, if you are pregnant, or sometimes with liver problems.  Normal is under 10 or so.  Dr. Pene let us know that the AFP they did the day of his scans was a 9 which is no worry.  Also he let us know that he was NED (no evidence of disease).  We were of course ecstatic and left feeling so grateful, and so blessed.  Trevor went back to work, and Shad and I went shopping and out to lunch.  We stayed downtown until Trevor was done, so we could take him home and he wouldn't have to ride the trolley and his bike.

That evening, I found out that a friends daughter, Abigail, had passed away after her cancer (neuroblastoma) relapsed in December.  They fought so hard for her, and it was so sad to see her lose her battle.  She was barely 4 years old.  These are the people that put on the run we participated in in February.  I have been closely following their story since then, and they are such amazing examples.  They never lost hope or faith as they watched their daughter suffer.  The mom wrote a post on their care page that talked about how hope changes.  It really touched me the first time I read it, and I have contemplated it often.  She said (I hope she doesn't mind me quoting her)"But we haven't lost hope.  Hope just changes.  It can morph from hoping for a cure, to hoping for a quality of life, to hoping for a peaceful passing.  Hope is only shattered when you hold on to one particular option, and another option happens." I was very sad that night, it doesn't seem fair that someone so young should die.  I am grateful for their example, and for the knowledge that I have that death is not the end.  It definitely makes things like this easier.

Tuesday morning was a normal morning, several bowls of Lucky Charms for the boy, an episode or 2 of Mickey Mouse, fighting Storm Troopers and Darth Vader, and then getting dressed for preschool.  He loves preschool, he loves being with friends, he loves learning.  He has wanted to go back since he got sick, and I am glad that he gets to now.  After dropping him off I headed to my YW presidency/advisor planning meeting.  It was great, I love all of the ladies that I am serving with, and talking with them about how to best meet the needs of our girls was amazing.

I rushed out of the meeting at 12:05 to make sure that I had plenty of time to get Shad from preschool.  As I was driving the phone rang and I noticed it was from the hospital.  I decided that I better answer it, because I thought it could be important.  I put it on speaker phone, and heard, "Mrs. Smith?" "Yes" I replied.  It was Dr. Pene.  He was straight to the point (something I really like about him), and said that Shad's alpha fetoprotein had gone up to 55, this was obviously a big jump from only two weeks ago.  He went on to say "This most likely means the cancer is back."  I acknowledged him, trying to keep from crying.  He went on to say that he is leaving town on Friday, so he wanted to get things going right away.  He told me that he had gone back over all of his scans from the 5th and still couldn't see anything.  He said we were going to approach things on a scan by scan basis, and wanted to start with a ct scan which Shad could be awake for.  He asked if he could give me a number to schedule a ct scan at which point I told him I couldn't actually write it down at that moment because I was driving.  He agreed to call me back with the number in about 10 minutes, once I reached my destination.  He then ended with a quick please drive carefully, and I am pretty sure that he felt bad for delivering this news whilst I was on the road.  I promised I would, hung up, and then began crying.  After a few deep breaths I was back under control for the moment.  I wanted, no needed, to tell someone, but Trevor was unreachable at the time, so I called my mom.  Luckily they were in a spot between Cameron and Flagstaff that actually received decent cell service, so I was able to talk to her for a couple of minutes.  I told her what Dr. Pene had said, and she asked what she could do.  I told her nothing right then, I just really needed to tell someone.  We talked for a minute, and then hung up.  I put on my happy face and went in and picked Shad up from preschool.  I let the teacher know I wasn't sure if he would be there on Thursday and the reason, she asked if she could give me a hug, and then let me know that she would be praying for him.  I got Shad, and we went back and got all buckled into the car.  I waited for Dr. Pene's call, and then headed to therapy.  Along the way I was crying a little bit.  I thought I was being discreet, silent crying, but with tears, when Shad asked why I had those tears on my face.  I said that I was sad, and he of course asked why.  I debated what I should tell him.  I didn't know how he would react to the news, or if he would even understand, but I didn't want to lie either.  I told him that I was sad because of what Dr. Pene had told me.  He asked what he told me.  I said that Dr. Pene thought that his cancer might have come back.  He said, oh so that ball inside me is back.  I said, yep we think so, and he said so that makes you sad.  I said yes, and he said, because mommies are sad when their little boys are sick?  I said yes again, and then he said, well I'm not sad.  The thing is, is he's not.  I am pretty sure that in his mind cancer is an adventure, and he finds life without all the doctor visits rather boring.

I texted Trevor once we got to therapy to let him know that I needed him to call me when he got a chance.  It was Shad's last day of occupational therapy.  Ms. Patricia wanted to see how his writing/drawing skills were getting, so she asked him to draw a picture of him, and then walked away.  He worked for a few minutes and then said he was done.  I was very impressed with the picture he had drawn.  He has come so far!  She said that she would hang it on her wall to remember him since he had done such a good job.

The rest of the day is just kind of a blur.  I talked to Trevor and told him the news while he was still at work, and then mostly just waited for him to come home.  I wanted something mindless to do, so I basically searched pinterest all night while watching the bachelorette (don't judge).

We were able to schedule Shad's ct scan for today, thankfully, so we ended up spending most of our day at the hospital.  Trevor couldn't get off work, but luckily Janaya was nice enough to come with us. He also had a previously scheduled audiology appointment, so we got that done also.  Everything is still looking good with his ears.  We will get the results of the scan tomorrow, and go from there.  Hopefully we will be able to get some questions answered.  It was a long day for him though, and he was out as soon as we were in the car.

This is kind of a downer post, but finding out that your child has cancer (for the 2nd time) is kind of a downer.  However, we are still very hopeful, right now hopeful that since they caught it so quickly we will be able to get rid of it easily.  We also still feel so grateful to have the gospel to help us through these difficult times.  Here is a quote that I used in my young women lesson on Sunday that I loved.  It is from the talk "The Power of Covenants" by Elder D. Todd Christofferson.
"All this is not to say that life in the covenant is free of challenge or that the obedient soul should be surprised if disappointments or even disasters interrupt his peace...This brings us to a second way in which our covenants supply strength - they produce the faith necessary to persevere and to do all things that are expedient in the Lord.  Our willingness to take upon us the name of Christ and keep his commandments requires a degree of faith, but as we honor our covenants, that faith expands....come what may, we can face life with hope and equanimity (Mental calmness, composure, and evenness of temper, esp. in a difficult situation).  We would really appreciate your prayers as we continue on with this journey.

The Update

Shad had his follow up appointment yesterday from his scans last week.  He had been anxiously waiting to see if his "little ball" was getting smaller.

Luckily Dr. Pene was ready for us, so we didn't have to wait too long.  He had to get his counts checked to see what his white blood count was.  Nurse Jo accessed him for the blood draw, and then immediately deaccessed him.  He was a little confused, because usually they leave him accessed in case he needs transfusions.  We went in with Dr. Pene and he gave us the results.  Shad has two lesions still on his lungs, and a small area left in his pelvis.  Dr. Pene recommended that we do 2 more rounds of chemotherapy and then do more scans to see what happens.  He said that the area in the pelvis could probably be removed with surgery, but they won't do surgery on his lungs, hence the chemo.  We will be starting on Monday.  He is going to suggest that urology do whatever testing they need while he is in the hospital for his chemo, and then hopefully the catheter can come out after he recovers from this round of chemo.  We will wait and see.  After the appointment we went down to McDonald's to get an ice cream treat.

This morning we went to the audiology department for a follow up hearing test that Dr. Pene wanted.  If Shad's hearing had been affected by the chemo (cisplatin), then he would reduce that drug by 50%.  Shad was very cooperative and all of the ladies were very impressed.  They claimed that he was the youngest child they have ever been able to get to do the part of the test where they have to raise their hands when they hear the beep.  He is a pretty smart kid!  His hearing tested normal, so we will be continuing with the chemo as normal.

him with the earphones in for the tests

Today

We awoke bright and early at 5:45 am.  Trevor and I got dressed, and then woke Shad up, put his brace on and headed to the hospital.

When we got there we had to go to admissions and check into the PICU for the day.  It took about 25 minutes and we were upstairs by about 7:20.  They had a room and a bed all ready for us.  Shad climbed up and was all ready to get the show on the road.  Typical of any trip to the hospital it was kind of a hurry up and wait type situation.  We had one of the nurses that we had when we were in the PICU, he was happy to see Shad up and walking around, and impressed that their relationship had progressed from Shad being scared of him taking his temperature, to Shad not even crying when he accessed his port.  

At about 5 to 8 the flood of people came (4 or 5) and began prepping him for sedation.  Shad fights it so much, he doesn't like to just give up and go to sleep.  The gave him the first dose and he was still awake and carrying on conversations with everyone.  They gave him more until he finally gave up.  They intubated him, since they had to put him into such a deep sleep, just to protect his airway.  Trevor and I gave him a kiss and went to get some breakfast.  He headed off to MRI a little before 9:00.  We waited in the room until he got back at about 12:00.  He started to wake up, which was pretty entertaining.  He said some really random things as well as a lot of rambling.  Once he was able to eat and drink a little we were allowed to leave.  He really wanted to walk, but was still a little bit too drowsy, so he was a little tipsy.  Although it was entertaining, we didn't want him to hurt himself, so Trevor carried him most of the way.

We are anxious to hear what the results are next week.  Hopefully the doctor is able to make it in (he is scheduled for jury duty).  

Blood, Platelets, and Orthopedics

     While Shad was in the hospital for round 4 of chemotherapy, his hemoglobin levels got really low, so Dr. Pene decided to do a blood transfusion.  They ended up doing it in the middle of the night so Shad slept right through it with no problems at all.  The worst part was when we had to wake him up to take the Tylenol and Benadryl that they administer before hand (2 reactions from blood transfusion can be itching, and fevers).

     We were able to leave the hospital on schedule Wednesday the 30th of January.  Unfortunately I came down with a crazy cough the night before, and so I pretty much tried to stay away from him as much as possible.  Luckily my mom came on Thursday, and was able to help out with him quite a bit which was really a lifesaver.  Thanks Mom!  I went to the Dr. on Friday to see if they could give me any medicine as cough drops and cough syrup weren't really doing anything.  They gave me some medicine, and I started feeling better a couple days later.  It was just a cold, but I never really had any congestion or anything else.  Luckily Shad is still healthy so I don't think he caught it.
     We went in for our first follow up appointment on Tuesday, and Shad's platelets were really low, so we had to stay for a transfusion.  We went downstairs and got some lunch while we waited for the platelets to come from the blood bank.  After we ate we went back upstairs and waited and waited some more.  Shad was watching a movie on a tv they had in the room for us, I crocheted and Trevor played on his phone/napped.  He got the benadryl and tylenol, and about 15 minutes later they started the transfusion.  It lasted about half an hour and then we were good to go.

     We went back again yesterday for the next follow up, and his counts were all much better.  He was even given the green light to go out if he wanted to.  The longer he goes through chemo the better I am getting at telling when his counts are low, and when they are going up.  When they are low he is a lot more moody, whiney, and tired.  As they get higher he becomes more and more like his normal self.  We go in again on Tuesday to check his counts again.  Dr. Pene wants to make sure that they get were they need to be so he can get all his scans the next week.  He is currently scheduled to have them on the 21st.  Dr. Pene is going to be gone that week, and possibly the start of the next, so we aren't sure when we will meet with him to find out what they said and discuss further options yet, but hopefully it won't be too long after.
     On Thursday we met with the orthopedist about Shad's back.  They did x-rays to make sure that his back is staying straight and lined up the way it is supposed to, and that the brace is still doing its job.  The doctor also talked some more about when the brace might be able to come off.  He said that they are going to treat Shad's back like a compound fracture, and so it should be able to heal in 6 weeks (probably less for his age).  As long as he doesn't have any more chemo for the next couple weeks (5), he should be able to get rid of the brace.  That means 5 weeks from the 30 we will go back in and do some xrays with the brace off, and see how things are looking.  They said even if he only goes 4 weeks without chemo it could be enough.  We will have to wait and see what happens after the scans.  Most likely we will go in around March 6 anyway, and do some X-rays without the brace just to see what things are looking like.