May 2015 updates

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A long day in LA….but these LA visits are now fewer and further in between and I am so thankful!

Kevin saw his hematologist and oncologist today following up on his current status and his recovery.  It was really all great news.  His tumor markers (measured with blood tests) were all within normal range.  His blood counts are still recovering from transplant, but continuing to trend in the right direction.  He had his chest scanned…but there was some mistake on the orders and his abdomen and pelvis were not scanned today.  But his chest scan showed his lung tumors to have continued to decrease in number and size since his last scan earlier this year.  AWESOME news!

The only negative news has to do with an injection he has to take daily because of his elevated clot risk.  He hates it….and basically was told it is the only/best option for him right now and he may have to continue for 6 months. He is not happy.   Pray for him to have peace with this necessary evil so he doesn’t dread that time every day.

He was given the all clear to do as much as he physically can do and just continue to regain his strength and stimina.  He will get the other scan in a few weeks and then see the surgeon…..followed by a  recheck of all things in August.  

Life is getting back to ‘normal’. It is a new normal and we are still figuring it out….but God has been good and we are embracing figuring it out.  I started a new job last week and Kevin is working modified duty right now.  So life is starting to be filled with less doctor appointments and more regular daily activities. 

And he gets to enjoy life again.

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Thank you all for your amazing support through this journey….I pray for your health to be protected and full of God’s blessings!

~Lisa

One Year “Anniversary”

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It’s not an anniversary I would like to celebrate.  The anniversary of the beginning of this nightmare of a year.  The first day Kevin’s cancer was confirmed.  The day we ‘owned’ the dreaded words, testicular cancer.

I can not believe it’s been a year.  In some ways, it seems like longer.  I have trouble remembering what life was like before this storm.  In other ways, it seems like only yesterday.  Time is weird like that. This year has been a test for our family.  But, by the grace of God, we have survived it.  And dare I say even thrived a bit.  There have been 100 days as an inpatient in the hospital, countless doctors appointments, thousands of blood draws, 9 rounds of chemotherapy, 3 stem cell transplants, 2 surgeries and a pulmonary embolism ( not necessarily in that order!)

My children have spent 100 days this year without their parents at home.  I have been by Kevin’s side almost every single day.  Almost 30% of the year.  I can’t imagine what that was like for them.  But they have been amazing.  Staying focused on school, keeping their grades up, excelling in all they do despite the major disruption to their lives.

Kevin is recovering well.  He is a pillar of strength.  Each step in the treatment and recovery process he does with the end goal of getting back to work.  Getting back to his other family.  The family that has supported us and loved us through this ordeal.  We are forever grateful and no words can accurately express how much this has meant to us.  To each of you reading this, your prayers, visits, trips to costco, good thoughts, gifts of service, meals, rides for kids, building bicycles, and more…..we are forever thankful.  THANK YOU!  We never would have made it through this without you.

This past week, Kevin has had the privilege of getting back in his uniform.  It was great to see him up and moving and exciting to hear his passion as he had the privilege of providing support instead of the receiving it.

At this moment in time, Kevin is done with active treatment. He is recovering from the trauma his body has been through this past year.  He will be watched closely and monitored to ensure that the cancer is dead.  The large tumor and involved lymph nodes have all been removed and after the last chemo treatments all the tissue was necrotic (dead).  He still has ‘stuff’ in his lungs.  It is likely that it is ‘dead stuff’ ….aka scar tissue and that is our hope.  Kevin will have scans and blood work next checked at the end of April.  Until then, he is working on getting stronger and excited to be working modified duty and be connected again with his fire family.

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Our motto has been Keep Calm and Kick Cancer’s Ass….Kevin has done this all year!

We believe that God does answer prayers.  We don’t understand why he allows us to go through the hard things.  But we do know that he is faithful.

Matthew 21:22 And whatever you ask in prayer, you will receive, if you have faith.”

With Love and Gratitude,

~Lisa

 

Praise the Lord – Good News

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It’s like a breath of fresh air.  Literally, like I can breath a little deeper and see a little clearer.  Lately, I have to admit I’ve been starting to suffocate.  Gasping for air.  Trusting….but even through the trust knowing I can’t know what’s next and feeling a little helpless.  This journey is all a bit overwhelming.

But today.  Today was a good day. Praise the Lord.

We saw Kevin’s surgeon today for a follow up.  He again told us he was so happy with how the surgery went.  He admitted he (the dr.) needed pain killers for several days after the tedious 12 hour surgery.  But it went very well.

Then he told us the pathology of the tumor/masses/lymph nodes that were removed.   And here is the best news we’ve heard in close to one year.  Everything came back as fibrosis, or DEAD/SCAR TISSUE.  There was no active cancer in any of the retroperitoneal area.  Did you hear that?  It was all dead.  These areas had a complete response to the chemotherapy.  I do believe in miracles.  At the beginning of this journey people would ask me if there was anything they could do, and my standard response was give me a miracle.  So I know lots of you prayed that for me.  THANK YOU.

There are still some questions, and we’re not completely out of the woods yet.  But definitely feeling a huge victory today.  There is still lots of ‘stuff’ in his lungs.  Doctor said there is 70% chance that what is in the lungs will be same as what was already removed.  So basically we watch and monitor his blood and his chest and hope things either shrink or stay the same.

In the meantime, Kevin is on the road to recovery.  He gets a little stronger everyday.  Due to the removal of the lymph nodes and the section of the inferior vena cava, he continues to have a ton of swelling and fluid accumulation in his legs and his abdomen.  This is all to be expected after this type of surgery (though we didn’t know that until now!) and it should continue to improve some each day.  He continues to experience quite a lot of pain, but is getting stronger and stronger each day.   The road to recovery is still long, but we can see the light.  And it’s looking beautiful!

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First step on a new path

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Yesterday we had our appointment at USC with Dr. Quinn.  This was the first step on the new path of treatment with doctors who are specialists in testicular cancer.   We felt so comfortable talking to him and he was confident that Kevin will have a full recovery.  He agreed that high dose chemotherapy with stem cell rescue is indeed the next course of action.  They do it a little differently there so the protocol is to do ‘triple tandem’ which means instead of two rounds, they do three.  It sounds like the ‘high dose chemotherapy’ may be a little less gnarly each time, so the recovery from one round to the next is quicker, but there are three rounds instead of just two.    Each round would require some hospitalization, with a minimum of 8 days, and up to as long as it takes to get the immune system back up and running well.

The treatment will start with 4 days of regular chemotherapy (inpatient) followed by preparation to get the stem cells harvested and then 3-5 days of outpatient stem cell harvesting.  This will be followed by the triple tandem rounds of high dose chemotherapy with stem cell rescue.

When will it start?  Well, the doctor was contacting the insurance to get authorization for the treatment plan (while we were in the room with him)  and we will get started as soon as the authorization comes through.  They like to start the 4 days of chemo on Thursdays, so it is possible if everyone cooperates that Kevin will be checking in to his new hospital room next Thursday, September 4th.  This is not set in stone and I will update later as we know more for sure.

We left this appointment feeling confident that we had  a doctor who is now leading Kevin’s care that is comfortable with this position.  Ready to take each step as they come and rid his body of cancer.

Tuesday, March 25, 2014

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Kevin spent the day on the 4th floor where he could be monitored more similar to the ICU monitoring.  He had a great day today.  He was able to be up and walk around the hall several laps twice today. 

Chemotherapy was short today and so far has only made him feel wiped out and tired but otherwise not too bad.

The evening found us moved again. This time to the 6th floor.  Back to where we started but in the room next door.  It was kind of comforting to see familiar faces up here and the brightness on this floor is so much more comforting then the 4th floor or ICU.

There is light at the end of the tunnel that is this hospital visit.  His oxygen needs seem to be stabilized and if we can see a little more strength and progress we should be able to go home soon.

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Looking forward to watching the sun set on our time at CMH.  Continue reading