Wednesday, December 17, 2008

Stanford was a flop...

Hello
Gabriela and I headed to Stanford on Tuesday as recommended by our Oncologist. The question was if our chromosome 15 issue was an indication of a pending relapse and if Stanford would recommend a Bone Marrow Transplant at this time. My question was more about understanding the chromosome 15 issue. To make this short, the doctor said it wasn't an indication of a relapse and he would not recommend a transplant at this time with my history of Mucor.

The reason the visit was a flop in my option is that the doctor didn't have my test results and after I gave them to his medical assistant, he still hadn't read it. I had to point out information that led him to need to do a further investigation and get back to us. Gabriela asked about alternative protocols and trials. Specifically we ask about the German study using Methadone on ALL. He never heard of that study. Our local news station highlighted the story. Why didn't this doctor - an expert on Leukemia not know something that is huge in possible future treatments? I wasn't impressed and at that point felt we were talking to another narrow focused doctor that treats only with chemo and radiation with no real knowledge of other protocols. It's sad that doctors aren't more rounded. They are directing people's lives. The psalmist warns us not to trust in men, but that our trust must only be in the Lord God.

Our next step is a geneticist to address the chromosome issue. I really want to understand this before we take any action. Please continue to pray for us. It's hard to have a "specialist" tell us we need to return to chemo. We don't believe that is the right step presently, but there is always that sense that we may be wrong. We are at peace regardless, but always questioning. I know less than the doctors and they know less than I need them to know. Anyway, thank you.

We are considering a home purchase and working with a great Realtor. The market is right with the housing bottom pretty close. Interest rates are very low. It's been nice to be free from a mortgage, but having a home would be great for our family to really settle down.

Would love to hear from you. We are not having anyone commenting to the blog, so I don't know who is out there. Would love to know how to pray for you.

His blessings,

Kelly

9 comments:

Katie said...

Hi Kelly, we're praying for you.

--Dan, Katie, Rachel and Rebekah Rogstad

Erica Foster said...

I am glad you don't have to have a transplant. I am always reading your updates and praying for you guys. Good luck with the house search! How exciting! :)

Anonymous said...

Hi Rosenthals! This is Kristi Dupper from Trinity. I found your blog through the Trinity website. I finished nursing school and I'm working at the Loma Linda Children's hospital as a pediatric oncology RN, so your blog is very interesting to me. I have seen how difficult the journey of a cancer diagnosis can be and my prayers are with you guys! Your children look so great- they're so grown up! Take care and God bless.

Merry Christmas!

Kristi

mickey said...

hi, kellly, just happened onto this as i was directing a friend to our church website and i decided to read ur blog...yes, we trust in the LORD not men...grant and i continue to walk that path of trusting the LORD...getting ours eyes off HIM and on our problems or else looking other places for answers to our questions is the quandary of our lives...thankfully our God in Sovereign, the Great Physician Prince of Peace, and Comforter...

UPDATE on our part of Apex...we still plan on leading the breakout on group safety...we're brainstorming and looking at the site u recommended...looking forward to being a part of that day BYW...jan. 10th is grant's b-day

Melanie said...

Hey there Rosenthal's~
Okay, I finally took the plunge and logged into Google rather than emailing. What can I say, I'm trying to become more technologically literate.

You are constantly in our prayers, and I must admit, I use your testimony on a regular basis as an encouragement to others as to the faithfulness of our Lord. I know that He is so pleased to have you as His witnesses.

Have fun in the house hunt. I remember walking into the house we bought in Two Harbors, MN. I knew the moment I saw the freezer over in a dark corner, that the house would be mine. I had asked for one back in CdA, and for some silly reason, I just knew that our offer would be accepted and God was giving me a freezer wrapped up in a house. LOL

Before we left MN, it was with joy that I related that story to the new owners, a young couple with a baby. I was able to encourage them to look for God to show Himself to them in totally unexpected ways. They laughed at me of course, but I know Him. He'll do it for them if they want Him to. I trust He's done that for you too. I know that there are probably pages of stories you can tell about the way He has surprised you with His love and faithfulness. Won't it be awesome to be all together again telling each other our stories WITH JESUS RIGHT THERE WITH US!!!
I can't wait!!!

Bret and I are hopping on a plane tomorrow morning and heading to California for a surprise Christmas visit with our families. Danielle and Todd are in on this too and they are driving down from CdA. Hopefully they'll get there before Christmas (They're stuck in Portland tonight) This will be the first time that my whole family will be together for Christmas in 15 years.

Praying that you will have a blessed and joyfilled Christmas. You are always in our hearts.
Love you all.

Anonymous said...

Hi Kelly, I can understand your frustration. We also read your blog and Pray for you and your wonderful family. Good luck with finding a house, how exciting!!! May God give you great peace and wisdom during this time.
Blessings
Alicia & Bruce

Anonymous said...

Hi Kelly and Gabriela,

I decided to check your blog today as I hadn't read it in a month maybe, and am so glad you have posted an update. I know I have said this before, but everytime I read it, and think of you, I struggle for you and with you about the very same questions and frustrations you have voiced.
Your logic is sound and your questions are valid. I hope it can be a comfort to you, to know that each of us would be struggling with quite the same questions, and that you are not alone in this quest to make the best possible decisions. You are handling this so courageously and carefully and honorably. I would not expect anything less than this, since I know and respect your character so much Kelly.

Regarding your treatment options (and since the immune system lecture is one I give :), your body can certainly fight cancer cells, so it makes so much sense to do everything possible to strengthen your body. And yes, chemo can work; but it is awful to the body and can kill itself as you know. I am very interested to hear how your genetics consultation goes.

I'm sure you have experienced first-hand that doctors are mostly about "odds" and what treatment will give the highest percentage of long-term remission (and know that a patient or family can sue if they don't advise you to follow researched-based protocols). And since there just isn't enough evidence that "alternative" therapies can give the same results, they usually don't recommend them. In a way, their hands are tied too. It is such a difficult system...they hand out information, but then you are left with making such potentially life-altering choices. I hope you have received some compassion along the way in your interactions with your doctors and nurses.

Your "appointment disappointment" at Stanford only reinforces that your trust is in the Lord and not human doctors (ok, doctors are busy...but it's not like you were there for a quote on a new heater or something. This is your life!! Very frustrating). Thankfully,when you walk out of that office, you can hang onto the knowledge and deep assurance that God can use any tools He wants (eastern, western), or none at all, to achieve His purposes in your life. At the end of the day, it is about making the decision you feel most at peace with at the time, having weighed all sources of information and wisdom. I will continue to pray that the Lord guides your mind and heart(these can even be in conflict with one another)to a "decison for today," knowing that this decision may change throughout the process of your journey.

I love you guys and miss our talks and walks and sharing our lives together. You are close to my heart all the time.

Merry Christmas with love and prayers,
Monica

Anonymous said...

Dear Kelly and Gabriela,

I was surprised when I saw all you have been through. I read your blog and pray for you brother. May the Lord bless you, heal, and strengthen you in body and spirit.

Your family looks great. Please shoot me an email so we can talk. I married and adopted a boy from Ukraine this year. ...lots happening. :) Steve Cassidy

Anonymous said...

Hi! Just wanted you to know that we do read your blog often and pray for you more! I am encouraged by you and your family.
Love you!
Stefanie & Jim Lowe