March 25, 2014

Went to the Huntsman today.  Ron had his 2 week follow up with the Doctor since beginning his new chemo.  Everything is looking really good!  He's feeling good.  We have the pain under control and the side effects from the new chemo are so far very minimal!!! He had his "bone infusion" so it was a long day but a good one.  He goes back in 2 more weeks for more follow up and an iron infusion.  Counting down to Arizona and some family fun.

Just a side note our grand-daughter Grace turned 5 yesterday.  We were able to go to her "Frozen" party on Saturday and it was a lot of fun!! Happy Birthday Grace we sure LOVE you!!

Such a cutie!!!!! 

FIGHT FIGHT FIGHT

March 18, 2014 Good News!!! Oh happy Day!!!

It finally happened!!! We went to the huntsman today to get results from the MRI (brain scan) and the long and short of it..... NO NEW tumors!!! Thats right no new tumors and they couldn't even see some of the ones that have been radiated and the ones they could see were all STABLE!!! 

Ok yes as always there is a bit of bad news but not much!!! His hemorrhage is still there, in fact it is a bit bigger, they think it is due to the fact that right by the bleed is some swelling.  But the doctor was not overly concerned.  As long as Ron doesn't experience regular headaches, they are going to wait and re-scan again in 2 more months.  

We met with the pain doc.  And they have the pain in his hip under control right now.  And Ron is actually feeling better than he has in a really long time!!! 

He started his new (chemo) drug and so far has been handling it really well.  We hope it's working as well as Ron feels!!

So for now we will count our many blessings, and be soooooooooo thankful for all we have been blessed with! 

We meet with his regular doc next week for labs and check up then his long infusion day for his Pamidronate (for his bones).  But things are good.  

We have plans to go see Logan and Lauren the first of May and we are keeping our fingers crossed that he will be the way he is now which is really pretty good.  And we can have a fun time with the whole family!!! 

Its a Good no FANTASTIC DAY!!!!!!

FIGHT FIGHT FIGHT 

March 5, 2014 Long post alert!!!!!

There have been a few things going on since I last posted so here goes.  Ron has been struggling a bit with his BP and keeping fluids in so last Friday we ended back in the acute care.  His BP was on the very low side and he was very dehydrated as well.  Not feeling well at all.  So they did more tests, took blood and gave him 3 liters of IV fluids, and needless to say that made him feel much better.  Home again for a fun weekend with Lindsey and the kids.

On Tuesday March 4th we met with Dr. Agarwal.  Took more blood and made sure we had every thing set up for his new chemo drug.  It's a process to get all the insurance and paper work done.  But we did it and the new chemo will be delivered on Friday for him to begin.  And just a side note they actually are calling it a chemo this time.  The others were referred to as target therapy, not that it really makes that big of a difference but I thought it was interesting.  After meeting with the doctor we went to the infusion room for a few hours of more fluids and iron.  Then we got to go home.  So we will wait until Friday and then begin a new journey.  Ron has been glad to have a break from the side effects of the last drug and we are hoping that the new drug will have less side effects but you just never know.  The one thing that we have noticed is that now that he is still experiencing pain we know that it is not caused from the drug but unfortunately from the cancer.

He has his MRI (brain scan) a week from Friday and we will get results the following Tuesday,  so more waiting.  But we are getting use to that.

I have been so blessed to get to meet so many people who have very similar trials in their lives and it has been so helpful for us both.  There are some really amazing people in the world who have shown me that we can all do hard things.  I have found a sight called "Kidney Cancer Warriors" It's a place to go and ask questions, give encouragement, ask for prayers, tell your story or just vent on a bad day.  I saw a post the other day that pretty much sums up exactly the way Ron and I have felt about this journey.  I asked her permission to share her thoughts on Ron's blog and she was kind enough to give me permission.  So I just copied it from her post and am re-posting it here.  I hope it gives you all the same amount of encouragement that it gave to Ron and I.

"I have learned to appreciate the beauty of a rainbow. I have learned that to enjoy rainbows however, I must first endure the rain. Never has that been more true than on 03/04/05. This date might not mean much to many people, other than the fact that it is a sequence of cool numbers. This date to me, however, means the difference between life and death—MY life and MY death. You see, it is the date I had my left radical nephrectomy, just 6 days after my world was turned upside down and I found out I had kidney cancer—renal cell carcinoma to be exact. Nine years ago today I was undergoing this major surgery in the hopes that my cancer would be eradicated. On that day, I lost my left kidney, my sense of what a normal life was supposed to be and always had been, and the thought that my mortality was a long way away and not something I needed to be concerned about. After all, I was only 35, just had my fourth child four months prior, and was the epitome of good health. 

Oh how my world was almost shattered nine years ago today—ALMOST. I say almost because through this difficult, life-threatening time, I learned more about my faith, the power of prayer, determination, compassion, how fragile and unpredictable life can be, and what an unbelievable network of family and friends I had. But most of all, I learned about HOPE, what life was really all about, the important things I needed to focus on, and about the blessings that cancer would bring into my life. Yes, blessings, because cancer has given me many blessings despite the curses it has also brought. Cancer brought people into my life I never would have known otherwise—people who have become some of my best friends and support and people I have come to admire very much. It showed me a love that I have witnessed and probably never would have appreciated as much before the “C” word. It has given me incredible strength I never would have thought possible for me to possess. Cancer has also given me courage I never knew I had.

As a friend of mine once shared, “cancer has become an unexpected detour on my life’s journey”. It has given me time to reflect on many things and to study the real lessons of life. Probably two of the hardest lessons I have had to learn though this were to try not to give in to fear or to be discouraged by setbacks. You see, any setbacks in life are often times chances to review the lessons we are all supposed to be learning. 

Cancer has left me with many scars and taken a toll on my health, and I am often frustrated by what I look like compared to my healthy years, but I remind myself every day that these scars are the brushstrokes in the masterpiece of my life--a reminder of what I have battled through, and survived. And it could always be worse—always! As difficult and painful as this journey can be (both physically and mentally), it is all a reminder that in the real scheme of life I am just grateful to live another day. 

Nine years ago on this date I begged my doctors to “promise” me I would be around for a long time because my kids needed their mom. They were only 8, 5, 3 years old and 4 months old. They needed me, but probably more importantly I needed them. I wanted to be here to kiss their boo boos, wipe away their tears at their first relationship heartaches. I wanted to see important milestones--graduations, weddings, and someday my grand babies. I was crushed--devastated--when every single one of them told me they weren’t in the promise-making business and couldn’t guarantee me six months and certainly not more. I was determined then to make the most of every day I am given. 

I know that I am not in control of this situation, and sometimes that is what makes this so frustrating and difficult. But I try to remember to enjoy the gift of every day because it is a present, and I want to enjoy this gift for as long as possible. For my fellow warriors, and in remembrance of those who have gone ahead of me, for my friends, for my family, and especially for my kids, I pray I have provided hope and that I have educated, advocated, and supported all of you through this as you have me. If anything can be gained from this misfortune, I hope that my journey in some way helps pave the way for others facing cancer, and that one day very soon we will find a cure for all cancers. “While I have cancer, cancer will NOT have me”. Happy cancerversary to me! I will gladly accept and celebrate one day at a time, or nine years at a time--many, many times over please! 03/04/14. A date I am ever so grateful to be here to celebrate.  -Melinda Dale Emmerd

As you can tell from these inspired words we are never alone in our fight.  And that is true no matter what kind of fight you may be in! 

So we will keep having FAITH in all things and know that we are being watched over and we will follow the direction that we are taken. 

"Faith is the bird that sings when the dawn is still dark"

Lindsey was in town when we were at the acute care last week.  It was nice to have her there with us for the day. 

FIGHT FIGHT FIGHT 

Scan results Feb. 20, 2014

I know that there are people waiting for the update, so I am just going to give the report as best as I can….

Ron's Kidney which measured at 2.6 x 1.5 cm last scan now is at 2.7 x 2.4 cm.  The large mass within the posterior lower pose now measures 4.6 x 3.9 cm which at last scan was 3.9 x 3.6 another increase in size.  Also Interval increase in soft tissue component of the left iliac bone metastatic lesion.  They find a mixed pattern of response to the therapy.  Also his adrenal gland has increased in size from 2.6 x 2.1 cm to 3.6 x 2.3 cm.  So what does this all mean? Basically that although he did respond in that the lungs and places that have been radiated have not increased, everything else has not responded in fact they have grown!  Not excatly what we wanted to hear. But also not too surprising to Ron as he has felt some pain in these areas lately.  So what to do now???? A new drug this time its called Everolimus (Afinitor) it is again an oral chemotherapy for metastatic kidney cancer.  Side effects well the list is about the same as last time…

• Nausea
• Vomiting 
• Diarrhea
• Mouth discomfort or sores
• Edman
• High cholesterol 
• High blood sugars
• High blood pressure
• Feeling tired or weak
• Respiratory symptoms (cough or shortness of breath)
• Infections
• Low blood count

Just to name a few. It will take a few weeks as always to get insurance approval, drugs ordered and get started again.  

As we are sitting in the infusion room Dr. Agarwal came in to see Ron.  Can I just say he is the best doctor ever!!! He came to check on Ron. He had heard that it took them 6 tries to get the IV in his arm and was not happy that it had been so difficult, he came to let Ron know that he did not have to be restricted to just using his right arm for IV (which is what we were told at the very beginning of the journey) that it would not be a problem to use the other arm where there was lymph nodes involved.  What great news his right arm has just been drained! All the veins that they try are so hard that it has been really stressful on Ron.  

He went on to explain that the reason for the iron is that he has been talking to another expert doc here at the HCH and was told that low iron helps cancer to grow.  He told him to check Rons iron, and he did, only to find out that Ron's iron is low sooooooo they are going to give Ron lots of iron!!! 

I am continued to be amazed that as I am sitting in my little chair wanting to scream or cry or anything thinking what more do we have to do, and in walks Rons doctor to give us more information and literally comfort!! He said you are doing all the right things and we are not giving up on you! We will keep looking for answers and doing all we can for you.  Although you don't qualify for any trials we will keep fighting and doing all we can for you.  And I know that is the truth!! 

So I'm not screaming or even crying ok maybe a little tear.  But it's because I do know that we are on a wonderful journey together! We have the blessing of knowing that we are an eternal partnership and that the Lord is the key to all thats taking place in this journey! He set the path and led the way.  And he will give us direction in all we need!  So we will enjoy the day together and go home together and that is my favorite place to be!! With Ron no matter what we are doing!!! 

And we will be prepared for the next step in this journey.  

FIGHT FIGHT FIGHT

back to the Hospital we GO!!!!! Feb. 11, 2014

Well we made it 11 days without having to go the HCH.  They have been days filled with Ron not feeling so good.  So this morning he woke and was really dragging and feeling "crappy" as he would say.  We took his blood pressure and it was really low.  He has high BP and the meds that he takes for the cancer cause hight BP as well.  So we couldn't understand why it would be low.   So a phone call was made and off to the acute care at huntsman we went.

Labs are always the first done when we get there.  Most of them came back at normal or just above normal levels for the things that they are concerned about, which is a good thing.  He was slightly dehydrated and so they gave him 2 litters of fluids.  That alone made him feel much better.  They took lots of other labs that will be getting results for over the next few days.

We hadn't even been in the hospital room for 10 min. and Ron's doctor, Dr. Agerwal came in to see him.  We couldn't believe it! He is such a great man, as well as a doctor.  He said they told me you were here and I wanted you to know that I'm on you case and will be informed as to all that is going on, and will get to the bottom of the problem.  He explained all the test (labs) and said that he would be doing some extra ones that will take some time for results but that he was not going to give up on Ron.  That was the blessing of the day!!! Not to mention the fact that the pharmacist who is helping with Ron's INR also "stopped by" to check on Ron and had his INR test while we were there as well, so he doesn't have to have that done tomorrow.  And one of the nurses there today was my friend Shauna, lots of small little blessings but they sure made the day go by so much better!!!  Always seeing that the Lord is so aware of what is going on in our lives and looking out for us. So what to do now….

We are home.  Ron is feeling better after receiving the fluids.  He has scans next week.  They will be very telling!!!!! My theory that I shared with the doc today is this… The meds that he is taking for the cancer are working and the side effects from them are causing him to feel so dragged down and not have much energy.  OR  The meds are not working and the cancer is causing it.  I like the first theory the best!!! Either way we will have more knowledge of what is going on next Thursday when we have the results from the CT scan.  The doctor even said that my theories makes sense but I guess we shall see.

So that is where we are at…. Valentines Day is Friday and I plan of spending it with Ron and having a fabulous day!!! And I hope you all have a fabulous day as well. Prayers are so welcome for this upcoming week of scans.  It is a scary and anxious time, but we know that the Lord has the greater plan and we will work towards doing what his will is!!!

                                                                FIGHT FIGHT FIGHT

Happy Valentines Day! From these three most darling girls!!! 

Feb. 2014…..

As you can see Maggie came home!!! She is doing much better and we are all very happy about that!

Ron has been glad to not have to go the Huntsman Center for a while.  However he has had to go get his INR tested more than he likes.  It shouldn't be a big deal.  But Ron never seems to make anything the easy way.  His first test went well and his range was right where they wanted it.  The next one was a bit higher so they said they wanted him tested again sooner this time.  So on Monday we went in for the "routine" test.  They had to poke his figures 5 times!!! Yep every single finger got poked and they never could get a reading.  It kept saying error 5 which means not enough blood was being given to the machine.  Which was soooooooooo not true he was giving them all the blood they needed!!! So they sent him home we called the doc and he said to wait for tomorrow and go try again.  If it didn't work they were going to have to draw blood and run a different kind of test.  Which did not make Ron too happy!! (Bless his heart)

Soooo  We went back again today.  The first poke came back as error 6.  Different from yesterday but still not reading.  So the tech called someone in the know and they told her to try it a different way.  FINALLY they got a good read.  His blood level is too high 3.8 they want it in the range of between 1 and 2.  So now they can adjust his meds and then he gets to go be tested again on Friday.  Ron has not been feeling too great lately so this didn't help at all.  But as always we will continue to do what is best for Ron and keep on keeping on.

We did make it to Payson this weekend to see Grace do a little ballet review for us.  It was so darling!!! We love our little girls!!!

Ron was really not feeling well that day, and we had taken the truck so I got to drive that beast home!! I didn't like that at all.  But Ron is a great teacher so it was ok.

And the fight continues. ….        FIGHT FIGHT FIGHT

January 30, 2014

Let's just say the end of January couldn't come sooner!!! Ron finished his radiation and was so happy to be done! We had his INR tested, which is the level that his blood needs to be to keep him from getting anymore blood clots, and it was right in the range the doctor wanted it to be at so I don't have to give him anymore shots:) He said that I was sad that I didn't get to give him any more, but truthfully I was really glad too! I'm not a fan of giving shots to him he has enough things to cause him pain he doesn't need anything else to add to it!! So we have now a 3 week break from going up to the Huntsman Center Oh HAPPY DAY!!!!

As we were leaving to go to our final radiation appointment we get a call from our daughter Lindsey.  Maggie her youngest is being admitted to the hospital in Provo.  They think she has pneumonia, needless to say she is one sick little girl.  

So after a long night they have found that she does have crackle in her lungs but it is not pneumonia, however the virus panel they did on her came back, she tested positive for three viruses, RSV, Adenovirus, and rhinovirus, (common cold) the doctor said the combination of the first two would wipe anyone out.  Her lungs haven't gotten worse.  The doctors want to monitor her breathing for a good part of the day and stop her iv fluids and get her to drink on her own.  We are hopping by the end of the day she will be able to go home to her own house.  

I guess the blessing in this is…. Ron is done for three weeks and doesn't have to go to any appointments but his quick INR test which is whenever he want to go to the centerville clinic which is close by our house.  So that gives me time to take care of my daughter and her sweet family.  Many prayers have already gone out on Maggie's behalf but we welcome all that are given.  

As always the fight continues.  FIGHT FIGHT FIGHT