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