Wednesday, April 3, 2013

Brock's Story

Sometime during February Brock started complaining every time I washed his hair.  Whenever I touched a certain spot on his head he would flinch in pain.  I noticed a bump, but just thought he had bumped his head on something and that it would go away.  Well, it definitely didn't go away.  I had his 5 year check-up scheduled for April 10th and figured I would just have them check it out then, but the bump started getting bigger and more painful.
March 8th - Started out totally normal.  I finally decided that waiting until April 10th to get this thing checked out was maybe not the best idea.  I took Brock in to show Tyler and have him feel the bump.  Tyler told me I should definitely take him in to see the doctor.  I got him in that day.  We saw Dr. Lynch, who is not our regular pediatrician.  Dr. Lynch felt the bump and immediately got up and brought one of his partners in to feel the bump as well.  Then they left to talk about it in the hall.  When Dr. Lynch came back in he told me they didn't know what it was, but that they thought I should go to Primary Children's Hospital as soon as possible to have it X-rayed.  I asked him if they thought it was a cyst, and they said not really.  Cysts usually have a definite border to them, and this lump did not.  It felt kind of spongy.  I still was not worried at this point, in hindsight maybe I should've caught on more quickly.
I had my mom come with me to the hospital because Brecken also needed a blood test to see if he was allergic to milk or soy (he's not allergic to either of them FYI).  I thought we could just kill two birds with one stone and it would be a lot easier if she was there.  Having her there turned out to be a small miracle.  Not sure if I could've held it together for what was about to happen without her there.
The X-rays were taken easy enough and we were waiting back in the waiting room when the office staff told me there was a call for me from Dr. Lynch.  Dr. Lynch said the X-rays showed some "bony abnormality".  I asked if he meant like a crack in the bone or something like that.  He didn't really rule that out, but I felt like he was trying to gently steer me towards other possibilities without totally freaking me out.  Anyways, he said a CT scan would be needed with and without contrast.  That was done pretty much immediately.  Brock handled the IV very well.  While still in the CT room the radiologist came to tell me that the abnormality had a blood supply and that it was most likely a disease call Langerhan's Cell Histiocytosis, but the chance still existed that it was a more aggressive form of Cancer.  We waited around while they decided whether or not Brock should be admitted to the hospital that night.  As soon as the radiologist mentioned "blood supply" my world shattered.  I don't know a lot, but I knew that was bad.  I held it together pretty well until I was back in the waiting room with my mom.  I left Brock with my mom and went into the bathroom and completely fell apart.  Eventually I collected myself and went back out into the waiting room.  I definitely didn't want Brock to see how upset I was.  Back in the waiting room, I received another call from Dr. Lynch.  He wanted to make sure I understood what the CT scan showed.  He also wanted to tell me a neurosurgeon would be down to talk to me.  While I was on the phone the surgeon had already arrived and was talking to Brock and checking his head.  The neurosurgeon confirmed that he and his colleagues also felt that the most likely scenario was LCH, but no one would be sure until after a biopsy and the other scenarios were pretty scary.  Surgery was scheduled for March 19th.  The neurosurgeon did ask Brock if his stomach had been hurting, and that's when it hit me that Brock had been complaining about his stomach hurting a lot lately.  From that point on, I was positive that whatever this was had already spread to other places in his body.

First X-rays
March 11th - Got a call from Oncology saying they wanted to see Brock the next morning.  My first thought was "they must know something that no one is telling me".  Later that day Dr. Lynch called me and apologized that oncology had got ahold of me before he did.  He is the one who had gotten in contact with them and wanted to make sure we were as prepared as we possibly could be.  Other possibilities were some kind of bone cancer or a lymphoma.  They needed me to take Brock back to the hospital to have labs done that day, so oncology would have the results before our visit the next day. Dr. Lynch called me a few hours later to tell me Brock's blood work looked great.  That went a long ways to put my mind at ease.  I was also comforted by the fact that Brock wasn't sick.  Dr. Lynch said usually with a more aggressive cancer kids have other symptoms and are visibly sick.  Brock seemed totally healthy aside from random complaints of stomach pain.
March 12 - Met with oncology.  They talked a little more about treatments for after the surgery and biopsy were performed.  We already knew that even with LCH the treatments were likely to include chemo or radiation.  They agreed that LCH was probably the most likely possibility, but again no way to be certain and if it was something else it was likely to be much more aggressive.  However, they were encouraged by his energy level and overall wellness.  After seeing him they said they felt better about the timing of his surgery.  We left that appointment with the understanding that our best case scenario would be a year of chemo after surgery.

March 18th - More labs and we met with the Neurosurgeon, Dr. Riva-Cambrin.  He explained more about the actual procedure.  He would take out the entire section of skull.  He was certain the tumor had not made its way into Brock's brain, but there was still some question as to whether or not it had invaded the derma.  He was pretty sure it hadn't, but he wouldn't know for sure until he got in there.  Also, a plastic surgeon, Dr. Siddiqi, would come in to patch Brock's skull and close it up.  Dr. Siddiqi patched his skull with a plate (that will dissolve in a year) and Norian bone cement to fill the defect.  Dr. Riva-Cambrin also was encouraged that the lump was painful to the touch.  He said that usually more aggressive cancerous tumors are not painful in that way.

March 19th - Surgery day.  We were scheduled to check in at the hospital at 11:00 am and were told surgery would begin about an hour and a half later. 
Well, he didn't go in for surgery until 3:30 pm.  Keep in mind he had been fasting since the night before, not easy or fun for anyone especially a little boy. In the meantime, he played lots of videogames and made a superhero cape.  A little while before surgery, Brock clung to me and screamed and begged me to take him home.  That was the first time that I 100% lost it in front of him. I think it was just weeks of anxiety all built up, and I couldn't hold it in anymore.  I had to step out and let Tyler take over for a while.  The nurse got a little upset with me, and she was totally right.  Of course, I knew it was not ok for anyone if I couldn't pull myself together.  It only lasted a minute, but it is something I really regret.  I have never been one of those moms who cries when my baby scrapes a knee or gets their booster shots, so the whole thing really caught me off guard.  Brock pulled himself together as well (with the help of some anti-anxiety medication).

Surgery was scheduled to last about 3.5 hours.  I expected it to be the longest 3.5 hours of my life, but it seemed to go by super fast.  Dr. Riva-Cambrin came and told us that the surgery went great.  He was able to get the whole tumor out and confirmed that the tumor had not invaded his brain or even the derma, which was really good news.  He also said that he and the pathologists still thought it was LCH and not cancer, but we would still have to wait a week or more for the final pathology report. More waiting.  More nerves and uncertainty, but still it was the very best news we could have gotten at that moment.  He also said Brock had woken up "piping mad" and they may call us down to recovery on the double to try and settle him down.  Just a minute later Dr. Siddiqi said his part of the surgery went perfectly as well.  Good news all around.
Brock in recovery.
The surgeon had told us what to expect when we saw Brock after surgery, but I am not gonna lie, Tyler and I were both surprised the incision was as big as it was.  Brock was not feeling good after surgery (go figure).  He wanted to throw up, but held it in for hours because he refused to throw up in anything besides the toilet.  He also refused to use the urinal to go to the bathroom.  We had to carry him to the toilet until he was strong enough to walk on his own.
The incision.
March 20th - Brock had another CT scan.  The neurosurgeon looked at it and said it looked great.  Brock couldn't be discharged until he started eating and he showed no interest in it at all.  I thought for sure we would be staying in the hospital another night.  He woke up from a nap around 1:30 and out of nowhere started eating.  He started with some oranges and then demanded some French fries.  Before we knew it he was yelling at nurses walking by in the hall to bring him some more French fries.  They wanted to see him walk, which he did effortlessly.  I had to keep him from running and jumping.  We were discharged about 3:30 pm, just 24 hours after he went in for surgery.
On our way home.
March 27th - After what seemed like an eternity of waiting, we final got the biopsy results.  LCH, not cancer.  Such good news.  I think that was the first night I actually slept without shaking in bed all night since the bomb dropped on March 8th.  Now that we knew what it was we just had to find out where it was, but it is funny how one's perspective changes.  You would think that the surgery, a diagnosis of LCH, a year of chemo treatment and owing thousands of dollars in medical bills would have devastated me, but compared with the alternative, I felt like the most blessed and luckiest girl in the whole world.
April 2nd - More labs, a skeletal survey and an appointment with oncology.  The x-rays from the skeletal survey did not show any LCH on any of his bones.  Also, his labs all came back totally normal!  Oh my gosh...such a relief!  Single site LCH which was totally removed during surgery.  No chemo or other treatments at this time!  We will do labs and a skeletal survey every three months for the first year to make sure it doesn't come back, but the doctors think it is very unlikely.  I can't even explain how thankful and relieved I am.  Such an answer to so many prayers!
Affected portion of skull removed from Brock's head during surgery.

Other Thoughts and Experiences
  • At about 2:00 am after Brock's surgery he was whimpering from the pain and not able to sleep at all.  As I was laying with him in his bed, he asked me to sing to him.  It makes me cry just thinking about it.  I sang Goodnight Sweetheart, The Lion Sleeps Tonight and made it part way through My Heavenly Father Loves Me before he fell fast asleep.  I will never forget being able to do that for him.  It felt so good as a mother to finally be able to actually do something for him that could make him feel better.
  • Special thanks to everyone who fasted and prayed for us. It is humbling to me that so many people would take the time to petition the Lord on our behalf.
  • Worst feeling in the world is to wake up every morning feeling like you just had a terrible nightmare only to realize it is real.
  • A part of me feels guilty.  I know that the Lord has blessed our family, and I am so grateful for that, but not everyone gets the same good news that we did, and I know that the Lord is just as mindful of them and their needs.  I remember the first time during this whole experience that I was actually able to pray for the Lord's will to be done and actually mean it.  I was so terrified to pray for that because all I really wanted was for Brock to have a long and healthy life.  It took a lot of faith to trust in the Lord's plan and his will no matter what that may be.
  • Tyler gave me a priesthood blessing the Monday after we found out Brock would need a biopsy.  I was literally a wreck.  I tried to hide it from the kids and be strong for them, but I usually couldn't keep it together for more than 30 minutes at a time.  The possibility of cancer was crippling, and I could not cope.  Tyler was so strong for us this whole time.  He had complete faith.  After that, I really settled down.  Fear really did leave me, and unless I purposely dwelt on all the negative possibilities, I was surprisingly peaceful.  People would send me text messages or make comments about how devastated or terrified I must be and it would shake me up a little like maybe I was in denial or completely out of touch with what all this could mean, but really I was very calm under the circumstances.
  • Tyler, my dad, Tyler's dad, Josh, Collin and Cory gave Brock a priesthood blessing on the Sunday before his surgery.  It was really amazing.  He was blessed that from that moment on his body would correct itself and start acting as it should.  Obviously, things have gone extremely well, but also of note is that Brock has not complained of stomach pains since that blessing, and all his blood tests show that all his organs are functioning just fine.
  • I was never nervous about the surgery itself.  I was always focused more on the results of the biopsy and what would come next.  Luckily all that turned out better than I had hoped for.
  • I have never been one of those people who thought doctors are overpaid.  I am so grateful for the sacrifices our doctors made to get their education and become so skilled at their trade. They were truly amazing and deserve everything penny they earn.  I can't imagine all the hours and stress they endure.  Truly remarkable.  Our pediatrician walked us through every step of the process and was in constant contact with us.  The surgeon called us himself after the surgery to talk about the biopsy and how Brock was recovering.  Oncology checked in with us several times and always returned phone calls within a matter of seconds.  Couldn't even believe it.
  • Tyler  was amazing.  He kept me pulled together which kept this whole family pulled together.  So grateful for him and our marriage.  Grateful that in moments of stress and trial we grow closer and are able pull together seamlessly. 
  • So grateful for my Savior and his atonement.  My testimony of him is stronger now than ever.  I have never felt his strength so strongly before.  My faith in him pushed all fear aside.  Any strength I had during this whole experience was definitely not my own but came from Him.  I know He lives!
  • The night when all this went down they kept the IV in Brock's arm until they were sure he was not going to be admitted that night.  When the nurse was taking it out she was crouched down at eye level with him, and their faces were just inches apart.  Brock says to the nurse, "You know what?  You got a big ol' face." I seriously almost died.
  • I should've never started praying to be a better mother ;)


Rowdy! said...

I love you little sister. And your family.

It's not the easy things in life that define us, it is the hard things. The scary things.

Remember the strength, hope, endurance, compassion and everything else you've learned and developed through this event.

Jena Rohatinsky said...

Tory- I am so glad that everything has turned out as well as it has, and we are praying for continual progress. If there is ANYTHING that I can do please let me know (801-787-1121). I don't have FB anymore so that number is the best way to reach me. My thoughts and prayers are with you guys the whole way!!!

tenacious d said...

Ditto what Rowdy said. I can't even put into words the deepest feelings I have right now.

A more superficial thing that I can share is that I will love the people at PCH forever for how they cared for you guys.

Jennifer said...

So glad to hear Brock is doing so well now, you guys! What a relief. Such a difficult and emotional ordeal you've all been through.

k.young said...

Reading this brought tears to my eyes. I love Brock and I am so glad he is doing so well. I can't imagine how scary and trying that time must have been. I am glad that things turned out so well.

Tory's Tunes