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.

SURGERY
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.

CHEMOTHERAPY
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.

MONITORING
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!