Modern Day Miracles

I just had a marathon day with doctors today with McKay.  We saw 3 different specialist.  Two at the Moran Eye Center and one at Primary Children's Hospital.  Since my last post McKay has had two additional surgeries.  Three in total so far.  The second surgery he had was to repair his detached retina and try and close up the hole that was still open in the back of his eye.  This surgery was very serious and very risky since his eye was still very unstable at that time.  The Dr. told me that he had a 50/50 chance of losing his eye during this surgery.  She was not convinced that she would be able to perform this surgery successfully.  In the back of my mind, I knew she would because of the priesthood blessing he had received and the many people that were praying and fasting for him.  In fact, our ward held a special fast for McKay the Sunday before this surgery.  Talk about feeling the power of heaven in our home.  That was experience like nothing else.  The power of prayer is real and when done by many faithful sincere people, it is amazing!  After the surgeon was done performing that surgery she came out to talk to me.  She was pleasantly surprised.  She told me that the surgery had gone better than she had expected.  With a smile in  my heart, I knew it was because of all the prayers that had been offered up in his behalf.  Then next few weeks went by and his eye seemed to not be healing properly.  Part of the surgery to fix the detached retina was to put a type of oil in his eye to act as a splint and hold the retina in place as it healed.  He was forming a large bump on the front of his eye that was getting bigger and bigger.  The doctors were keeping a close eye on him, so when they noticed that things were not getting better but getting a little worse, they decided they needed to go back in for a 3rd surgery to fix the problem.  His hole in the back of his eye hadn't closed up completely, so the oil had leaked out and was causing a bulge in the front of his eye.  It had gotten so big that that bulge was now starting to cause a hole in the front of his eye.  Again they went in to do the 3rd surgery.  It went well but it looked awful!  It was right around Halloween so we just told McKay that he had a great Halloween eye.  He loves Halloween and anything scary so he thought it was pretty cool!  We made many many trips down to Salt Lake for follow ups and each time the different doctors were amazed at the progress he was making.  This brings us back to our marathon day today.  When our 1st doctor took a look at McKay, she noticed that he was seeing 20/25 out of his  bad eye.  That couldn't be!  So they rechecked.  Same results!  I can't even begin to tell you have excited and overcome with joy I felt at that moment.  There were times that McKay would look around the room like a little blind kid trying to find the screen he was suppose to be looking at.  It was very hard to see that.  But to go from my little blind buddy looking aimlessly around not being able to see anything to this little guy seeing 20/25!!! So, off to the 2nd doctor for the day.  This was the plastic surgeon that will, if we decide later, take out the piece of shrapnel that is still lodged in the muscle behind his eye.  The piece that is still in there is 1/8 of an inch away from his optic nerve.  Going in to retrieve it could run the risk of damaging that optic nerve.  That would blind him in both eyes.  It's just in a real tricky spot.  The other side of the the coin is that leaving it in there runs certain risks as well.  He is still just  a little kid.  He will grow and it is a possibility that that piece of metal could shift and hit the optic nerve.  The other risk in leaving it in is if he were ever to need a MRI.  Having metal in his eye could really cause problems if someone did an MRI on him with out knowing his full medical history.  When we met with this doctor, he looked over the notes from our previous visit with the other doctor just and hour before.  He read in her notes that McKay was seeing 20/25 out of that bad eye.  He left the room and I over heard him out in the hall telling his staff that this was "impossible" that this little kid could see 20/25,  He wanted them to come in and recheck his vision.  He could not believe that this could be true.  So they rechecked.  20/25 from this second test.  Amazing!!! Still a flood of happy emotions came over me!  Sitting there I knew we had been given a great gift.  Pure mercy from our Heavenly Father.  A miracle had been granted to us!  I'm not exactly sure why, we are no more deserving than the next person, but he gave it to us and we will forever be thankful for it!  The next doctor yielded the same results.  20/25 and another doctor in awe at the outcome of this horrible accident.  The only difference with this last doctor is when I mentioned that this was a complete miracle. He turned to me and said, "no, it's not a miracle.  This is a direct result of great medical care."  I did have to agree that McKay had received probably the best medical care there is today, but nothing but the hand of God could have saved this little guys eye.  My response to him was respectfully, "I disagree".  I said, " You can believe what you want to believe, but I know what I know and that is this is  a true miracle from God!"  He just looked at me like I was crazy.  That didn't bother me any because I was so happy nothing could have brought me down from my high that day.  I have thought and thought about it!  Why did Heavenly Father grant US this miracle?  People suffer the natural consequences of accidents all the time.  You get in a car accident and get severely hurt or what ever the accident is there can be life time effects of that accident.  This was one of those life changing accidents that could have changed his life.  For some reason, the good Lord found it in his heart to give us this great gift.  I am so thankful for the many many prayers and fasting that we up for McKay and our family.  I am grateful for miracles.  They are real and come from a loving and merciful Heavenly Father.  How blessed we are!

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.