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