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What started out as a site to update on our daughter's cancer has thankfully grown into a site to update on our beautiful family of four. Enjoy our journey...

Saturday, June 23, 2007

Cautiously Optimistic

Yesterday was a day of emotions, decisions, choices, and worry.

Before going down to have our consultation with Charli’s primary oncologist we thought we had three options for moving forward with her treatment plan. We thought we would have the option of continuing treatment, stopping treatment, or surgery. Upon our arrival we were told that we only had two safe options. I will tell you a little about each option, maybe this will help you to know why we made the decision we did.

As a prelude, Charli’s tumor has shrunk at least 75% with the four rounds of treatment. The mass that is left is near Charli’s spine. The mass that is left may or may not be cancerous at this time. It is possible that what is left is an “empty” mass, and that would not be helped with chemo, nor would leaving it cause harm. However, if the tumor would grow treatment would be necessary.

This option was quickly dismissed when the risks were discussed – and basically not even considered as an option. In order to get to the mass that is left in Charli’s spine surgery would not only be tricky but also dangerous. Some of the side effects of surgery would be deformity caused by the breaking of the bones to get to the tumor, along with other more scary possibilities.


We could continue with four more rounds of treatment. Doing this does not guarantee that the mass left in Charli’s spine would shrink. The drugs used for Charli’s chemo have side effects that may not be seen for years, not to mention the risks that she is exposed to while in treatment. Some of the acute effects we would worry about would be low blood counts, infection, and illness. The long term effects can range from learning disabilities to heart damage. We could move forward with Chemo and in four months when we do the next CT scan it is possible that we would see no improvement, meaning it was not necessary. Or, we could see a decrease in the tumor – meaning it was the right choice to make.

We had the option of monitoring Charli’s mass on a regular basis to track what it is doing. By choosing this plan every 6 weeks Charli would undergo a CT scan to evaluate the tumor that has been left behind. Best case scenario is that the mass would stay the same or shrink on its own. Worst case scenario is that after 6 or 12 weeks we would see a growth of the tumor. At this time we would evaluate the results and possibly choose to do chemo at that time. This option banks on the fact that Charli’s body will be growing at a “rapid” pass while the tumor (hopefully) would stay the same size or be smaller.

When Charli was diagnosed three months ago her tumor was in a dangerous spot because of its placement, which made quick treatment necessary. Thank God, the treatment worked and Charli has regained her mobility.

Okay, before I tell you which option we choose I need to preface it with saying:
This is the choice we made, we feel confident in it for reasons that may or may not have been discussed on this blog. We ask that you do not question the decision we have made, it was not an easy one. There are several risks and benefits to all the options discussed with our Dr. and unless you were in the room with us, it is impossible for you to know which option would be right. We realize that no matter which choice we make we may always wonder if the other option would have been better. However, we are not going to allow ourselves or others to think this way – because this is the choice we have made, and we will move forward with it. We do thank you for supporting our choice and respecting the sensitivity of the issue at hand. Knowing that whatever decision we make may or may not have a lifelong effect on Charli is something that we were not prepared to do when all of this started…most of what has happened in our life the past four months we have not been prepared for. Most of all, thank you for your support.

Our decision has been to monitor Charli’s tumor and evaluate the status every six weeks. If in six weeks the tumor has increased in size we have the option of “changing our mind” and moving forward with the next four rounds of treatment. This method is not an absolute answer. If at anytime we feel we would like to change our mind and move forward with treatment with have that option. Also, if we have a feeling that something isn’t right we can move her CT scan up and get her checked at anytime. We feel that this is the safest plan for more than one reason. By choosing this option we are not pumping Charli’s little body with potentially dangerous drugs, if not needed. And, at this time we can not say we are 100% sure if chemo will work. Also, this option will allow us to change our mind and move forward with another treatment plan at a later time. If we choose to move forward with chemo, we can not take that back. Surgery would also be an option that we could never take back if it did not go well. Although it is possible that in six weeks we will need to move forward with more treatment, we will know that we are doing it out of necessity and not pure hope.

This was a painstaking choice, and one that no parents should need to make. However, Charli’s progress was not typical in some instances.

Our Dr. was comfortable with our decision, and agreed with the choice we made. I did ask her very directly what she would do if this were her daughter or granddaughter and she told me that she would have to sit and do the same thing we were doing…weigh our options. Charli’s situation is something that specialists are going to start large study on, the success rate of monitoring vs. continuing treatment. We hope that in several years from now there will be hard data that will help other parents make this decision, but until then – we just have to trust our gut, our doctors, and God.

I will post more later, I am a bit exhausted after writing this. I have so many pictures to post from Father’s Day and other events…I will try to do this later this weekend!


Justine said...

So glad to hear the tumor is smaller. Congrats to Charlie for being such a strong girl.

Anonymous said...

Brenda, Chad and Charli,
You as parents are making the best decision you can make as parents based on the expertise of your doctor! You also must believe that God has his hands in this process and has led you to the decision you made yesterday! As parents we all have tough decisions to make and I think that you have made a very tough decision and have made a great decision. I support you 100%!!! You need nothing but support right now and as you continue on this journey as a family. Only you know what was discussed in that room and you are the ones that have to make the decision. I hope that no one chooses to be critical of your decision. Remember, God works in mysterious ways and he is guiding every decision you make with the doctor!!! I continue to keep your family in my thoughts and prayers!!! We are all growing and becoming better people because of the situation you are faced with. It's tough because you're the one making the tough decisions, but don't let anyone question what you're doing!!! You are intelligent people and are doing the absolute best for that little girl that means the world to you and so many other people!

Aunt Rachelle said...

I too support you and this decision for Charli. If the medical world did not beleive this would be a benefit for Charli it would not have been given as an option. The tumor did react to the chemo ... now Charli will grow and get stronger and "grow out" of the tumor!

I personally can't wait to see her ... and watch her get "sassy" just like her Mom and her cousins!!

Cindy said...

I feel like you and Chad have made the right decision. I am certain I would have chosen the same option for Mia if we were in that position. You are all so strong. Hugs to you all.


Anonymous said...

Hi Brenda,

I'm glad to hear the tumor responded so well to the first four rounds. Ultimately it is your and decision as parents, is what is best for your daughter. I'm not here to judge and I support you 100%! I will pray that whatever is left is just hallow and will be nothing so she can continue with monitoring. Especially if the doctor agrees with your decision. I look forward to more updates and happier pictures. I don't know if you guys are home yet but I hope if you aren't that you have a safe trip! Anna

Anonymous said...


Anonymous said...

I behind you guys 110%!!! You're all so strong and we really commend you for your honesty, optimisim, faith, strength and so many other qualities you have and show on a daily basis. Charli will some day know just how special and caring her parents are. Great news that the tumor has gotten smaller and keep looking forward...don't look back. Trust your gut decision and know that God has a plan. Lots of love to you!! -Courtney

Shevy said...

I was so glad to read that the tumor has gotten smaller! I'll keep praying that as Charli grows the tumor shrinks!

Sadie said...

i am SO proud of all of you.

Stacy from Michigan said...

I was out of town this weekend and I found myself thinking of Charli and wondering how she did with her scans...I am so happy to come home and find that the tumor has shrunk!! Keep fighting little one!! God Bless you!!

P.S. As a parent myself, I feel you made the best decision...stay strong and keep the faith!!

Anonymous said...

I was so hapy to read that the tumor had shrunk that much. That is wonderful news. Give the choices you had I think I would have gone the same route that you did. It wouldnt have been an option if it wasnt safe for Charli. Now you can have a more normal summer and let Charli experience all the FUN things that little kids need to see and do. You did the right thing and NEVER feel bad that you didnt because ONLY you and Chad can know what is best for your little girl. God has ALWAYS been watching over you and Chad and will contiune to do so. Kelly

Katie said...

All we can do is support your decision. You are Charli's parents and are the ones who get to decide what's best for her right now. Of course, we support you in that. This sounds like the right decision for her right now. I have praying all weekend for you all, having to wait until Monday morning at work to get online. Charli is blessed to have you and Chad as her parents. We will keep praying for your sweet daughter. The tumor shrinking so much is proof of the power of prayer. I feel that that is all I can do, so I'm gonna keep at it.
Much love from the VanDykes in Michigan.

Anonymous said...

I am so glad to hear that the chemo has helped shrink the tumor thus far. I can't imagine being your position, having to make such a decision about your child. I would NEVER judge your decision in anyway. Only you and Chad know all the information (all that is available) and only you and Chad know you daughter. I admire you both for your strength throughout all of this. I will continue to pray for your strength and for Charli. God Bless you all!

Anonymous said...

So happy to read about Charli's tumor having responded to the chemo. Now, maybe Kaitlyn and Charli will get to play together. You and Chad are doing an awesome job in making very tough choices regarding Charli. When she gets old enough to understand this she will be so proud of you, just like we are!

Big Hugs,

Abbie, Doug & Eastyn Oberhauser said...

Brenda, Chad & Charli,
Just wanted to drop a note and let you all know how much we pray for you and your little girl. She is absolutely adorable! She is blessed to have you two as parents...the choices we make for our children are always made with the help of God. We admire you, think about you, and pray for you every single day. You are the parents of the best...a little girl...she's a cutie!

Anonymous said...

Brenda and Chad,
There are no words to express how proud I am of you both. This is a decision that no parents should ever have to make, but you are handling it with a remarkable strength and grace. I hope that you save all these journals for Charlie to read when she is older. She really still has no idea that she's been blessed with the world's best parents! What a lucky girl:)
As for your decision, I was literally cheering (and crying) when I got to the end of your entry and read what option you had chosen. I truly believe in my heart that it is the best one. You have let the medical world work their magic on the cancer, and the result has been tremendous. Now it is time to let God do the rest. I know that He will carry your family through this, and I have faith that you will look back on your decision as the "right" one.
Continued prayers and many, many hugs,
Lauren, Keith, and Tyler Borack