The latest.....

A lot has happened since the last post.  Justin completed his radiation on May 2^nd.   Even though he was still feeling crappy that day he was so very excited to be over with it.  It took about a month for all his side effects to wear off.  He has regained his taste buds since then; which I think was the most exciting part for him.  And his energy has returned.  His hair still has not grown back in the area that they radiated and it may never.  But the bright side is he only has to shave half his face now.  So that’s half the work.   He walked out on his last day of radiation with his mask and a diploma for completing it.  You know it sucked if they gave you a diploma for it. Lol   But thank the Lord we completed that hurdle.

About a week after he completed his treatment was our daughter, Hopes 8^th birthday.  She had a bug and garden party with her friends.  She dressed up as beautiful butterfly.  They all decorated flower pots and had lots of bug goodies.

Daddy was still sick for her actual birthday so she decided to postpone or birthday dinner out to Outback until daddy was feeling better and had his taste buds back.  Here’s a picture from the end of May when we were finally able to go celebrate as a family at Outback. 

The kids last day of school was June 6^th.  Hope completed 2^nd grade with straight E’s and nothing but positive words from all her teachers.  They call her smiley and ask me if she was born smiling.   Her teacher said she was such a joy to have this year.  Jayden graduated from Kindergarten.  He was so blessed to have such an amazing teacher and a wonderful year at Keswick.   I was a bit concerned with him going into Kindergarten because he is one of the youngest in his class.  But he far outdid his expectations and did an amazing job in Kindergarten.      Not only did he learn to read but also his clock, counting by 2’s, 5’s, 10’s and weekly he had a bible verse memorized.  He also learned his ABC’s in sign language and all the books of the bible in order.  I was beyond impressed with my little man!  He was so proud of himself at graduation but mommy and daddy were even prouder watching our son from the very front row.

And then after the last day of school we all jumped in the escalade together as a family and headed to Orlando for a short but much needed 3 night stay at the Nickelodeon hotel.  Yes it was very overcast and rained just about every night.  But for Justin that was perfect weather.  He’s not a big fan of being in the sun because of his situation so with the overcast skies it allowed us all to be down at the pool all day and not worry too much about the sun.  God knew we needed the clouds.    We had such a nice time as a family and it’s a small memory that will last forever.

So it’s been a busy couple months since I last posted.  But through it all we continued to have June 26^th in the back of our minds, the anticipation of Justin’s PET scan.  We discussed it quite often between the two of us and how we felt.   Sometimes it was just a thought.  Other days it was what felt like shortness of breath and the trembling of the heart.  But every day it was a battle of the mind that we had to continue to give to God.  However nothing can prepare you for the news we ended up receiving this past Tuesday, June 26^th. 

Tuesday morning, June 26^th the alarm went off at 5am.  First thing was to check the weather.  The night before we were told that the Howard Franklin was shut down due to the tropical storm Debby.  The Howard Franklin is the major bridge that we have to take to get to Moffitt.  Praise God though it had reopened.  So we thanked God for the first prayer answered and got ready and headed over.  We arrived at 7am for his first appointment which was his PET scan.  Justin was the very first patient that day and we were the very first ones in the waiting room.    The nurse took him back and let me know he would be done about 10am.  So I pulled out my IPad and started to fiddle around.  Took a few walks to the bathroom and a stroll around the hospital.  Finally 10am came and he was done with his first appointment for the day.  Next appointment was at 11:15am to see his Radiation doctor.  We thought this appointment was going to be just like the others were he would ask Justin how he was doing, touch his face a few times and then send him on his way.  However that wasn’t the case.  Dr Rau (his radiation doctor) came in and asked Justin how he was.  Justin said I’m doing great.  Energy has returned, taste buds have returned and he’s doing great.  The only complaint Justin had was his head is very sensitive to the touch.  Justin’s best way to describe it is, if he runs his fingers through the top of his head through his hair it’s a very uncomfortable feeling.  The Doctor than asked if he’s had any migraines.  Justin said “no.”  Dr Rau said “Really, No migraines?”  He then said “The reason I’m asking is because your pet scan from this morning shows that the cancer has spread to your brain”. 

Spread to his brain?!?!?!?!?!?!?!!!!!  We were both speechless.  Not only because of the obvious but also because we weren’t expecting to get the PET scan results from that appointment.  We thought we heard that at our 3:30pm appointment with the oncologist.  Dr Rau said a few other things that I don’t remember and then sent us on our way.  We walked out of the room.  I was balling.  Justin was hugging me and we both were speechless. 

Our next appointment wasn’t till 2:30pm with the speech pathologist.  It was only 12pm at this point so we left Moffit and went to Chillis to get away.  I cried the whole way there and part of lunch.  We ordered all this food and hardly ate anything.  We were both in shock.  Couldn’t believe the news we just heard.  Why God?  Why again?  Hasn’t a year been long enough? 

2:30pm speech appointment went great.   They are happy that he never lost his swallowing skills and just reinforced to him that he needs to continue his jaw exercises.

And then the dreaded 3:30pm appointment with the oncologist.  As if arriving to that appointment wasn’t bad enough they had us wait in the waiting room for an hour!  I was so over waiting at this point.  But my husband reminded me that we need to be patient.  That they are here to help him and we need to not get upset about having to wait.  Errr   I hate when he’s right. Lol   Dr. Kuchakar (sp?), his oncologist finally came in around 4:30pm.  She confirmed what his radiation doctor had told him earlier that there is a tumor on his brain.  She wanted to get him in for an emergency MRI immediately following and then to meet with the neuro surgeon the next morning.   She said surgery is our best bet and that there may be some clinical trial drugs that she can give him but that we would discuss that at a later point after surgery.   She than sent us down for the emergency MRI. 

We finally arrived home at 9:15pm that night.  We were the first to walk into Moffitt and the very last to leave.  This was me by the end of the night in the empty waiting room. 

Yesterday, we meant with the neuro doctors and neuro surgeon.  We love them.  They are a great team and we felt very comfortable about everything.  They took time to explain our options, the pros and cons of all the options and were very detailed.  We left that appointment with all our answers answered and a clear idea with what was happening next and why.  Unfortunately they informed us though that Justin didn’t have just one but TWO malignant tumors in his brain.  One is about 1.6 cm and is operable.  The other one is smaller but is not operable because of its location.  Removing the smaller one is life threatening because of its location.   So after being thoroughly given our 3 options, we chose the most highly recommended option, which is to surgically remove the large one and then have five days of radiation to the area.  And then the second tumor they will do a one time zap of radiation to it and hopefully kill the whole tumor.  The doctors are 95% confident that this will get rid of both tumors completely. 

So with that being said, surgery is scheduled for tomorrow, June 29^th.  We will arrive at Moffitt at 5 am, and surgery is scheduled to begin at 7 am.  It’s roughly a 4 hour surgery.  Immediately following his surgery, he will be in ICU for 24 hours and then scheduled to be released and sent home on Saturday, June 30^th.  Believe it or not this will be his least painful surgery out of the 3 he has had so far.  Reason being is there are no nerves in your brain, so the only pain he will feel will be at the incision where the staples will be.  The only side affect of the surgery is possible peripheral view of his eye sight.  And within a week or so he’ll be feeling good. 

The doctors are still giving him a good prognosis.  They said even though melanoma is very aggressive, there are so many new drugs out that are very successful for melanoma.  So as long as we have options and strength to keep trying, then we won’t give up. 

And then my poor kids…it seems like just about every time daddy starts to be feeling better we get bad results and he’s back in surgery.  Daddy told both kids individually last night.  Hope’s response was, “It’s in your brain???” with a confused look on her face.  She then said, “Daddy, I’ve never seen a brain before.”  So she didn’t’ seem to be bothered too much.   Jayden on the other hand was affected a little bit more.  When Daddy told him he just got very quiet and took a big gulp, as though he was holding back tears.  Justin asked him if he was okay, and he said, “Daddy, I’m very sad for you.”  Justin reassured him that everything would be okay.  And then Keegan, well he has just really missed his Mommy.  For those of you who know Keegan, you know that he just adores my Mom, which he calls “wawa”.  But the last few days, we’ve been at Moffitt for what seems like 24/7, and he’s been crying for Mommy.   Justin and I have always liked to keep as much as possible quite about the cancer around the kids.  We don’t want them to worry.  We want them to be able to have a carefree life.  But after today, Justin and I accepted the fact that we will probably be dealing with this for the rest of his life, however long or short that may be, so it’s probably about time they learn to accept it and deal with it.  The chances of his cancer returning are very likely and even more so to the brain. 

It’s been a lot to gulp.  Justin is doing amazing.  His spirits are so positive and up.  Not sure if it’s hit him yet, as it’s been a whirlwind these last two days.  Tuesday morning we woke up great with life.  And now tomorrow morning, he is having emergency brain surgery.  So not sure that either of us have processed too much yet. 

We’ve been at pre-op the majority of today.  And it’s started to hit me a little more.  We sat in the neuro waiting room today with a very sweet couple.  The wife was blonde and perky and immediately started a conversation with us.  Her husband sat next to her, and he was barely holding on to life.  He has survived 10 years since his first brain tumor.  He has had 3 brain surgeries since then, and 10 years later, you could tell he was on his last days.  They had 3 kids and a love for each other that was very evident.  But she also spoke with confidence in her words that she knew he was on his last days, but she felt so blessed t o have had him these last 10 years.  He was only 50.  I could barely say goodbye to the sweet couple, because I was doing everything I could to keep it together.  I’m coming to the realization that that is us.  It hurts my heart more than anything else.  10 years is a long time for some.   But I’m selfish of my husband’s life, and 10 years isn’t long enough.  Justin is only 32. 

But this is where our faith comes in.  I don’t know what God holds for our future.  But I do know that He has a purpose for everything.  And even though I don’t like dealing with this, I have chosen to give all my fears and anxieties to God and trust.  It’s a daily battle. 

Just and I love and adore each other.  And we’ve enjoyed our time together this pas year.  Even this week, in between the tears, we have laughed so hard together.  The Lord has given me a husband who not only loves the Lord but loves life.  He has chosen to accept where God has him and face it with a joyful spirit.

So with all that being said, I’m exhausted.  Time to hit the bed before our 3:30 am alarm goes off.  I thank you for the prayers during his surgery tomorrow.  I will update again as soon as I can.

And I leave you with a verse. I Thessalonians 5:16-18 "Be joyful always; pray continually; give thanks in all circumstances, for this is Gods will for you in Christ Jesus."

I’ve learned that sometimes blessings are disguised by trials.  God sometimes gives us trials, so that we can see the blessings in the end and know that only God could have done it.  So that as a result we are forced to keep our eyes on Him, trust Him completely, and in the end thank Him and give Him the glory.  Which makes it all worth it in the end.  So today I’m choosing to thank God for the many blessings He has given us.  Just to wake up next to my hubby another day is a huge blessing, and to have 3 beautiful healthy kids and a roof over our heads.  There are people in Colorado who have lost everything this week due to fires.  So let us not forget how much we are blessed and the endless list of things we have to be thankful for.  And if we keep our eyes focused on the many blessings, it’s amazing how much our perspective can change. 

And as you say a prayer for Justin, I ask that you not only life up the families in Colorado who have lost everything to fires, but also for Kelli and Ryan. Two different very young individuals who are also fighting cancer currently also.  Good night and love to you all.