Curious McKay

Just as we thought we could take a break from worry for awhile, McKay our 8 year old, decided that we needed just one more thing to worry about.  On  Sunday August 16th we had just gotten home from church and had eaten lunch together when we all decided to just relax for a little bit.  McKay went out in the garage and found a .22 bullet and a lighter and wanted to know what would happen if he lit up the bullet.  Well, he found out and so did we!!!  I was on the phone with my sister when I heard the loud explosion, then the death cry!  I went running to see what had happened.  When I saw McKay with blood coming out his eye and screaming the the worst scream a mother could hear, I knew it was bad.  I grabbed a towel and Steve grabbed the keys and we went frantically to the hospital.  I was trying to call our friend that is a ophthalmologist while we were driving.  I couldn't get a hold of him so I called the hospital to let them know we were on our way and that we were going to need an ophthalmologist as soon as we arrived.  They called the doctor on call, who happened to be our friend.  When we arrived at the hospital, they got us right in and our friend called us back on our phone.  They did an assessment on McKay first thing and he was completely blind in his left injured eye.  He could not see anything, only black.  I was on the phone with our friend telling him everything we knew and anxiously asking him if McKay would have a chance of getting any sight back eventually?  In a very sincere and concerned way, he told me that usually after a trauma like this, what they see right after the accident is usually what they will see in the end.  Not what a mother ever wants to hear.  My heart fell and I dropped the phone and started to sob.   I knew if there was any chance that McKay would ever see again in that eye, it would be a miracle.  I happen to believe in miracles and have witness several very real ones in our lives just recently.  The doctors had done a CT Scan on his eye and found a 10 mm piece of metal shrapnel lodged in the muscle behind his eye.  The bullet had exploded and a piece of the shell casing had gone through his eyelid and in the front of his eye, all the way through his eye and out the back.  It was a miracle that he hadn't been killed.  But it was serious enough that the doctors wanted to transfer him down to Salt Lake to Primary Children's Medical Center. As we waited for the ambulance to arrive to transport him to Salt Lake, Steve and my brother-in-law gave McKay a priesthood blessing.  In the blessing it said that he would be able to see again.  It said that he would have a long road ahead of him, but that he would be able to one day see out of that eye again.  Oh, what a feeling of relief I felt.  McKay was scared, I was scared, Steve was scared, until that blessing.  Then we knew he would be okay.  It was now in the Lord's hands and I knew of a surety that our Heavenly Father knew McKay and I felt the love he had for him.  I knew at that time that McKay had a very special mission to complete in this life and he was not yet finished.  He had been protected by heavenly angels when that bullet had exploded.  I knew that if McKay needs his eye to fulfill his mission here on earth that he will get his vision back and if he doesn't need it then he will be made whole someday.  It is such a relieving feeling to turn your burdens over to the Lord.  He knows what is best and He will make right all the wrongs in His time.  McKay was being so brave.  When they would ask him if he was in pain, he would cheerfully say "NOPE".  Then when no one was in the room but me, I saw a little tear fall and I ask him if he was really okay.  He then said in a little shaky voice, "Mommy, it hurts really bad."  I quickly went to get the nurse to give him something for the pain.  They came right away to give him some pain meds, just in time to go for his first, and I hope, last ambulance ride. When we arrived at Primary Children's, they had their ophthalmology team waiting.  They arranged surgery right away.  The doctors had been told that he was completely blind in his left eye.  As they were doing their assessments of McKay, he could see something.  A little light and maybe some fingers as they held them right in front of his eye.  This is not how things usually go with injuries like his.  A bit of mystery to the doctors, but I knew it was a direct result of the priesthood blessing he had received right before we left Logan.  They took him to do surgery to close his eye the best they could.   After the surgery the doctor came to talk to us and he said he was able to stitch his eye lid and the front of his eye, but the exit wound was so far in the back that they were only able to put 1 stitch to close it.  They had to leave it open and hope that it would close on it's own.  If it did, then there might be a chance to save his eye.  If it didn't, he would lose his eye and we would have to get a glass eye.  We prayed and prayed some more. I talked to Jacob on the phone and he told me that he had gotten the other kids at home together and they had prayed together for their brother too.  Our prayers were answered about a week later when they were able to finally find a measurable pressure in his eye.  We took many trips to Salt Lake.  Every other day for about a month.  We met with many doctors.  They needed to do another surgery because the scar that was closing the exit wound in the back of his eye was also causing traction on his retina and pulling it off the back of his eye.  Also there was so much blood inside his eye they needed to remove.  This time the surgery was done by a retina specialist.  She was unsure if she would be able to save his eye during the surgery.  His eye was just so damaged. She told us that it could go either way.  Once again, we called upon the powers of heaven to help with this surgery.  Not only did he get a priesthood blessing again, many friends and family came together and fasted for McKay to get the extra help he needed to get through this next step.  August 31st was his last surgery and when the doctor came out to talk to me about how the surgery had gone, all I really heard was, "It went better than I had expected."  After that, everything all meshed together.  I knew our many prayers had been answered.  It's not over and McKay will have many more surgeries and probably many more bad days but for now, he still has his eye and we have all been blessed to feel the love of our Savior and the blessings of the spirit in our home.  We have been so blessed to have the support of a great family and many friends and neighbors that have come to our rescue many times.  I have come to know that the trials we have been through has allowed us to see the good in so many people.  We have also been able to witness so many miracles and the goodness of God.  What a blessing that has been. 

Time is a blessing!

Time is the greatest healer.  Things have gotten much better at our house.  Steve is back to work and he seems to be getting more energy everyday.  The lump on his neck behind his ear turned out to be a swollen lymph node.  His body had been through so much in trying to fight all the bad chemicals they were putting in his body, that one of those lymph nodes just got clogged up.  It is so nice to see him come back to us.  That was so scary for awhile there.  I must admit, I kind of freaked out a little.  Just when things were suppose to be getting better, he got worse.  It makes us that much more grateful for his recovery and his improvements.  Our summer has been cut short for us.   It feels like it just started and school starts here in 3 weeks.  So for the next 3 weeks we are cramming in all the fun stuff we can.  We went to Bear Lake last weekend, we are headed to a friends cabin in Midway this weekend.  Steve has rented a 6 person razor to take the family on an excursion next weekend.  Then Sierra and I are going to St. George to see Beauty and the Beast at the Tuacahn Theater for a girls weekend, and the boys will go to the Wind Rivers for a canoe trip over Labor Day weekend.  We are trying to fit a whole summer of fun into just a few weeks.  I think we will all need a nap after it all.  We have really changed how we look at things.  One of the great blessings cancer gives you is a change of perspective.  We are so grateful that Steve is NED (no evidence of disease) right now, but we have no guarantee that it will last.  We have decided to do all we can to spend time with our family and friends that are dear to us and live each day to the fullest.  There is no time to waist!   We want to make memories and develop relationships that will last forever.  Each day is a blessing we are so thankful for. 

The race is not over

Yes it's true, I am not a good blogger.  I really didn't think to many people checked on the blog until I had may people texting and asking for a follow up from my last post. I went back and read it, since it's been a while, and I did leave things undone.  So sorry for that.  All the results that we had done while we were back at the Huntsman came back good and clean.  That included: CT of his head and neck with and without contrast, blood tests, blood cultures to look for infections, echo cardiogram with a bubble test to see if he had a hole in his heart, a short EEG, and a LONG 24 hour EEG.  I mean that was a long 24 hours.  They were looking to see if he was having any type of seizure activity.  Again, everything came back good.  So, what do we do from here?  He had a team of neurologists visit him, a team of oncologists and many other NP's and PA's.  He was seen by many people while we were there.  That was very comforting for me.  To be honest, this was kind of freaking me out.  He had never been like this before through it all and now all the sudden things just went crazy!   We have more scans on Tuesday so maybe more answers???   In my mind, it was like running a race.  When we started, we knew where the finish line was.  By the end we were exhausted and tired but we knew the end was close so we gave it our all to make it to the finish line.  The only thing is,  as we crossed the finish line something happened and our race wasn't over quiet yet.  We were asked to keep on running not know where our new finish line waited.  Here we are still running.  Steve seems to improve with each day.  He doesn't have much energy and he still forgets things he's trying to say.  He will still repeat me after I say something to him but that is getting better.  For awhile there I thought I had a new parrot. I think he realizes that things are still just not right, but he doesn't know how to fix them.  It seems to be frustrating to him.  When we were in the hospital for our first ER trip, my brother in law came to give Steve a blessing.  In that blessing he said that everything will be alright.  I am counting on that!  That is what I keep reminding myself when the stress of all this comes crashing down on me.  I am so grateful for the priesthood.  Every blessing that Steve has received through all of this seems to be for me as much as for him.  To me, that shows me that I have a loving Heavenly Father that is aware of even my small heartache through it all.  How grateful I am for that.  I don't know how I could do it with out HIM!

We went to the demolition derby last night.

Couldn't help but relate to how this car looks. 

That's about how I feel these days...

This to shall end

Just when we thought things would start to get back to normal they spun out of control for us.  We got home a week ago today and for the first few days things seemed to be going along just as usual.  Lots of nausea and fatigue, but that was pretty normal for what Steve had just been through.  On Wed. the nurse from home health came to draw labs and to give him some fluids.  I had left to run kids to soccer and basketball when the nurse called and said that I needed to come home and take Steve to the ER.  He was not making any sense and he was very confused.  I hurried home and headed up to the hospital.  The doctors there were unfamiliar with bio chemo and the effects. It was very frustrating.  It was very scary for me because this was not normal for him. This kind of thing has never happened.  He couldn't finish a sentence or a thought.  He would make crazy sentences and switch words around and even letters in words.  He didn't know what day it was and he couldn't write what he wanted.  They did a brain MRI and chest x-ray, blood work, and an EKG.  All of which came back good and clean.  So they sent us on our way.  AHHH!!! he was still not able to make clear sentences.  They had him sign out and he could not write the date or time.  I looked at the nurse and said, "Can't you see he is not stable and not okay?"  She just said, "We have done all we can do here.  We are an ER so if he needs more help you'll have to go some where else."  I was not comfortable at all leaving with how he was at that time.  I called down to the Huntsman and talked to his oncology team.  They felt like he needed to be seen by a neurologist.  They recommended that I take him down to the University of Utah medical center ER.  So off we went to the 2nd ER for the day.  I took with me the disk of his MRI and his EKG and copies of his lab work so all that wouldn't have to be redone.  When we got down to the U, it was crazy.  We sat and we sat and we sat for over 3 hours with nothing being done.  When we first got there, Steve was doing much better so they wouldn't even give us a Neuro consult like we really needed.  Talk about more frustration!  After about 2 hours of just sitting and waiting, Steve started to lose his speech again.  I asked to nurse to come in and see for herself.  Finally they decided to get a neuro consult.  The neurologist came in and did a series of tests and felt like they should rule out some big things.  By now, Steve had had enough.  He was done.  They didn't seem to know much about Bio Chemo either.  In fact they said they had to look it up and read up on it when we were there.  He had lost all confidence in everyone there.  He decided to check himself out AMA (against medical advice).  Talk about a bad day!! By the way, it was our 15 year anniversary, one we won't forget anytime soon. We got home around 1:00 am.  We were both spent.  Maybe a good night seep would help?  We gave it a day, and when we woke up this morning, things were still not good.  Still couldn't form complete sentences and he was still really confused.  I talked him into coming back to the hospital to finish the tests that they wanted to run but couldn't because he ran.  I called the on call oncologist to see if we could by pass the ER this time and just get admitted.  I was afraid if we had to go the the ER again, that he wouldn't last the wait that is inevitable at the ER. Luckily he mad that happen.  So, here we are back at the Huntsman again.  So far today they have done a chest x-ray, blood cultures, blood testes, head and neck CT, 30 min. EEG, he has been evaluated by the neurology team and is now hooked up for a extended EEG that will last all night.  We have accomplished more in the few hours at the Huntsman than we did all day at two different ER's.  They are just on it here.  There is a chance that we might not find anything but a least we will be able to rule out the big stuff.  We should have more answers tomorrow but for now, we have one unhappy guy who is just so tired of all this stuff.  He has been through so much already and it just seems to keep going on and on.  This to shall end.  It just seems to be an endurance test at this point.

Round 3 Day 5

We are home!  Seriously, there is no better feeling than this.  When the doctor came in today Steve was sitting in a chair and I looked at him and saw a big lump behind his ear.  OH MAN!  I asked the doctor to look at it when he was right there and sure enough, he thought that we needed to get a biopsy of it before we left today.  Steve was kind of mad at me for mentioning it.  That meant we may not get out of there as soon as we could have. We couldn't get out of there soon enough as it was.  It didn't take to long for the people from pathology to come and start poking on him.  They are pretty sure that it is just a lymph node that is big but we won't know for sure until Monday. Until then, we are going to enjoy our weekend.  Hopefully we can control the nausea better this week.  Steve is planning to go back to work next week so we will see if that happens.  We have one more count down going on and that is for his interferon shots.  3 more then we will really be done.  We were talking on the way home today about how we made the better choice of 3 months verses 1 year of interferon shots.  I don't think he would have lasted a whole year with these shots.  They are brutal.  Now it's time to take our life back!!!

Round 3 Day 4

Today has been a great day!  Mostly because the count down is on.  We officially finished his last round of chemo today.  It's been like a party here today with so many visitors.  I loved it! I think it really helped lift Steve's spirits as well.  He was still battling fevers most the day and was pretty sick but knowing we get to go home tomorrow and that we made it through all three rounds is awesome!  He started a treatment on Monday that lasts 96 hours so that will be done around 12:00 tomorrow and he has to get one more interferon shot tomorrow then we get to go home.  We have even started counting down on how many shots he has left till we are completely done.  It feels like he has finished a major milestone and it has been a major accomplishment to get through this treatment.  After we get home he will have 3 more shots of interferon then he has scans scheduled in July and hopefully everything is clear and we can start our summer vacation.  We are so excited to get back to normal living.  Cancer has taken enough from us for now, we are ready to take our life back.  Once again, I find it hard to find the words to express our gratitude for all the help and support we have received since all this started.  This week especially this week.  So many people have stepped in to help us get everyone to so may different places.  When my family offered to help us they probably had no idea what they had signed up for.  This week alone we had basketball camp, basketball tournament, soccer tournament, cub scout day camp and of course they all had their regular practices all week as well.  There is no way we could have done any of this with out all the help we have received.  We have always been taught to serve others.  It hasn't been until we have been on the other side of service that I have learned the meaning of service in a much deeper way.  I am always so thankful for the Lord taking the time to teach us these lessons.

I thought this was cute.  Steve brought this little car and put it in his bathroom to remind him of McKay while he was here.  Nothing says McKay like a little hot wheel.  Something to put a smile on his face.  

Round 3 Day 3

I have to apologize right up front.  This is going to be a longer entry tonight so I won't be offended if this is one you skip.  My heart is overflowing with love and gratitude for all the wonderful experiences I was able to be a part of tonight.  I came home to attend a benefit dinner that some very good friends organized and put on for our family tonight.  I was so overwhelmed and amazed at the amount of people and support that was there tonight.  There were people that didn't even know us but had been touched by melanoma in a loved one so they were there just to support us.  Our neighbors, friends, family, patients, and strangers all came together to support Steve in his fight.  How could you not gain strength from that? There is power in numbers.  I was extremely touched by the love that was given to my family tonight.  I was going to say something tonight, but my emotions are so close to the surface that I wasn't sure I could with out busting into the ugly cry.  So I will tell you all what was on my mind here where I can ugly cry in private.

The very first day in the hospital on round 1, the team of nurses came in and placed a PICC Line for the week.  This is how all of his chemo and treatments would be given and where all the blood draws would come out of.  He was all hooked up and receiving all of his pre meds before they would start this awful treatment.  I remember standing there in his room with a few nurses.  Steve was standing next to what they call his tree of life.  All these bags hung with different drugs and fluid.  All part of his treatment.  Then the nurses were there to answer any questions we might have and kind of give us a run down of things to expect this up and coming week.  Then Steve being Steve, started telling them how all this was going to work.  We were going to do this , and we were going to do that.  He was taking charge of the situation and making sure everyone knew just what to do in this next week.  I just stepped back and watched the nurses look at each other not knowing quite what to say so with a little chuckle, I just said, "You can't tell he is usually the one in charge.  He is usually the one who is giving directions and laying out the plan of treatment."  Oh boy, this was going to be interesting I could tell right off the bat.  The nurses just laughed but were probably a bit nervous about this one.  As the days went on things got more serious.  One night around 3:30in the morning one of the alarms went off.  There were many different alarms always going off. It could mean one of the bags of fluid or medicine was out and needs to be changed, it could mean the battery was running low.  Sometimes I would forget to plug that monster beast back to the wall. An alarm would sound when his oxygen would drop. That's when I would pop out of bed and hurry over to get the oxygen on him.  The first little while, I had it on all wrong.  It still worked it just night have strangled him is all Most these alarms I have learned how to fix them with out calling the nurse.  But this night an alarm went off and it was one I couldn't fix.  Steve's heart had slipped out of a normal rhythm and was causing quite a commotion.  I woke up to a room full of doctors and nurses doing what they have been trained to do.  They were getting Steve back!In that moment of pure fear and panic I did what I have been trained to do.  I dropped to my knees and prayed with all my heart.  With tears streaming down my already wet cheeks I knew right then that not only did Steve have a very well trained medical staff attending to him but he also had an army of angels from the other side that were there helping those nurses and doctors try to save my sweetheart.  I knew then, he was in very good hands.  Although it was an intense few hours that Steve slept right through, the sense of peace came over me and the feeling of fear left. The power of prayer is real. I felt it that night I dropped to my knees in desperate prayer and I have felt it time and time again through all of this.  All the prayers that have been said by all of you in our behalf have lifted us up and helped us make it through a very tough time.  We have witnesses several miracles.  Some I have shared, and some that are so sacred they are ours alone to enjoy.  As much as I hate cancer, I love and will forever be grateful for the lessons it has taught me and my family.  Things we have learned going through this trial, we could have learned any other way.  To me, that shows me 1:How well Heavenly Father knows each and every one of us and 2:That he loves us enough to give us the trials that will benefit us the most and to teach us the things that will bring us closer to God.   3: When we go through these really hard trials he doesn't make us go through them alone.  He sends his earthly angels to help us.  These angels come in a form of a friend, family members, and even sometimes little fairies that come clean my house, fold my laundry and even clean our windows and fix broken tail lights on our car. 

I can't begin to thank all of you tonight for being there for our family.  Thank you seems to be so small compared to the feeling in my heart.  I'm not sure I can find a word that could best describe it.  All I can say is the I hope one day in your life you might have the chance to feel the feelings that are in my heart tonight.  We are not done fighting this battle.  We will fight this cancer with all we have for as long as we have to. But in the end, we will put our complete trust in God and what ever he sees fit we will be grateful for the ride.  God has a plan and it is a perfect plan.  He knows what He is doing and we are just her along for the ride.  I have such love and admiration for you all.  I will be forever grateful to all of you who are sharing in this experience with us.  Steve and I are changed people.  I have to say my most sincere thank you to my dear friend who wouldn't give up on Steve and I and our prideful hearts. Because of her, we have been blessed with more support than we could have ever imagined. Many other blessings came in our life after we let down our pride and accepted the hand that was being extended to us.     Our Spirits have been lifted after tonight. 

It will be impossible to reach out and thank you all individually, so I hope you will read here and feel my most sincere gratitude and my biggest thank you .  I wish there were words that would express better what I am feeling, but I hope you might be able to feel just a little of what is in my heart tonight.  My heart is super full tonight with love and gratitude for so many things.  Love you ALL!!