The boys and I had a wonderful weekend together. Randell and William finished the exterior body of William’s derby car and the first few layers of spray paint is on. The only thing left to do is add the lead (weight), add the roll cage, final exterior paint and decor, and test drives ;). William's car is green so he named it the Green Hornet!
Ever since William’s diagnoses 10 months ago I have not been able to sit through an entire sermon at church without becoming a crying blubbering mess. Church is one of the few places where I don’t find myself holding my breath in a futile attempt to not cry. Instead, it has become the one place where I can take that deep breath, expand my lungs, and soak Randell’s shirt sleeves and shoulders with tears. This Sunday’s message by Pastor Tim was amazing and it stirred some emotions and thoughts that I have not wanted to deal with for a long time, if you are interested in hearing it, you are welcome to listen to the podcast on iTunes or you can listen online : http://www.gvcconline.com/audiofiles.aspx.
Towards the end of the service while Pastor Tim was finishing up on his message I started drying off my tears, blowing my nose and emotionally putting myself back together again. And then it happened, the music team started to sing a song that instantly sent tears to my eyes and a hard knot in my throat. “Through It All” is a song that I vividly remember hearing my grandma and grandpa singing. My maternal grandparents were pastors in the communities that they lived in. I remember being a small child and thinking that my grandpa was an angel because he always had sick, sad and broken people coming into his home so that he could pray for them and fix their problems :) I have such fond memories of my grandparents repeatedly singing this song while going through everyday things like cooking and sewing. I know that this must sound silly to some, but hearing that song yesterday was the encouragement, the sign, the message, the prescription I needed… If any of my cousins are reading this I wonder if you too have good memories of hearing Ouma and Oupa singing this song. .
After having a very emotional Sunday and leaving church with a renewed sense of hope and faith I was certain that I could face anything. We have now been at the hospital for less than 6 hours and all the hope and faith that was so abundant yesterday is now completely gone.
Before I get into the detail of this chemo, I want take a moment to remind you about the conversations I had with the oncology team last week.
Conversation 1 : I asked the team to please consider doing Irotecan, Temador, and Avastin.
Conversation 2: Team came back with a suggestion of doing Irotecan, Temador, and Vincristine. Using Vincristine made sense because it is a widely used chemo in sarcoma patients and William had great success on it with the P6 protocol.
Conversation 3: I agreed to do the chemo with the understanding that once I provide supporting information for Avastin , then the team would give it a shot.
Okay, so moving on....We got to the clinic today and found out that the team had decided to take treatment in a completely different direction. Yes, this was all a complete surprise to us. I think that Dr. Hsu saw my immediate shock and anger and therefore quickly started explaining to me that this new protocol is actually a protocol that Dr. Anderson @ MD Anderson designed, approved and wrote medical articles on.. I think that Dr. Hsu thought that by him providing us with this chemo protocol from MD Anderson that I would somehow be happy. Maybe he though that I would be grateful for the new information. Truth is, I am not happy or grateful. I am furious and during my melt down in the clinic I was on a rampage of verbally puking all the words of betrayal, disappointment, anger, frustration, confusion and anxiety that I have stored in my heart for 10 months...
There are certain unwritten rules between oncology doctors and oncology mom. Two of those rules are as follows:
Rule No. 1 - Don't decide on treatment plan without consulting the "Momcologist". Treatment plans are to be discussed and decided on collectively before implementation.
Just because you are a doctor it does not mean that I trust you and therefore I am not going to submissively agree with a treatment plan that you have not made me aware of and I know nothing about
Rule No. 2- You do not give a "Momcologist" a last minute treatment plan, especially not when the treatment starts in 2 hours and she knows nothing about the treatment, side effects, etc.
Just because you are a doctor it does not mean that I trust you and therefore I am not going to submissively agree on a treatment plan that I not only know nothing about, but that I just found out about 5 minutes ago.
I asked Dr. Hsu why the treatment plan changed and he stated that it was because one of the chemo's is now oral vs. IV. I asked him why this made a difference in whether or not he received the Vincristine and he told me "Well, I don't know, but that is how the study was written and studied" I don't like getting answers like that - AlI take away from that is that this doctor who is supposed to be saving my son's live can't even give me an educated answer as to why IV chemo is different from oral and why one method vs. another means that Vincristine needs to be completely excluded.
The new treatment is Temador and Irotecan....nothing else....and it is done in a two week treatment plan vs. a five day treatment plan with the Temador,Irotecan and Vincristine.
What I am really angry about is that the decision to change treatment was decided on last week during the weekly team meeting. Why didn't any one bother to call me? Why did no one give me heads up and tell me that we will be in the hospital for 2 weeks instead of 5 days?
After leaving the clinic I sat in car considering our options
Option 1-Go home, pack bags and leave for Houston. We would wait in Houston for the insurance to get figured out. This would mean that William would be without chemo for an unknown amount of time.....
Option 2-Go home, pack bags and drive down to LA and get admitted into a sarcoma center...This would mean that William would be without chemo for an unknown amount of time....
Option 3-Stay at this hospital, start this weird chemo that I know nothing about and put together a plan of action.......
I decided on option 3. It's been more than 30 days since William's last chemo and it would be too risky to wait for another treatment. So, from what I know and from what I have read we will be here for about 10 days. Hopefully during the next 10 days I can make some sort of progress for with the transfer to MD Anderson. If MD Anderson does not become an option for us within 7 days then I will move to Option 2. UCLA Jonsson Comprehensive Cancer Center has one of the busiest sarcoma centers in the nation; Cedars-Sinai has a really good sarcoma center too. Both of my backup hospitals have experience with DSRCT and both are sarcoma center.
The reason why it is so important for William to get treated at a sarcoma center is because sarcoma cancer centers are far more educated on the cancer, they are more willing to take necessary risks, they have a better understanding, they know the chemo better, they have the resources for a wide range of treatments, procedures and studies.
So, here we are at Sutter going through day 1 of 10 in a new chemo protocol. So far so good.
Keep on keeping on. Live Strong in God's love for us
1 comment:
HANG IN THERE!
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