13 hours ago
The only place I can go is into Your arms
Where I throw to You my feeble prayers
Well in brokeness I can see this was Your will for me
So help me to know that You are near
Let me start by saying that this is a hard decision... No, it is the hardest. I'm sure you get it.
A few things have factored into what Tom and I have decided. We will go ahead with treatment as planned for Rachael.
1. I could seek 2nd, 3rd and 4th opinions and I would still be in this same place of having to decide because there will not be a consensus.
2. This is MY child and though I know it isn’t “easy” for someone else to make a decision for her, I'm the one who wants her here until she is old more than anyone else. Studies and experts and other survivors may not agree on what is the best course, but the doctor who has met her and looked me in the eye has said that this will give her the BEST SHOT. I spoke with him tonight and he told me that even if it gives her until 2012 until re-occurrence instead of 2011 we will have one more year not only with her, but also one more year for research to catch up with the disease.
3. She is five. Quality over quantity looks different when you are 50, 60, 70 or five. We want quantity and because of her age, she has a better chance of the quality not suffering like it might if she were older.
4. I had peace about the decision to go with the prescribed treatment until I began questioning it. I believe in questioning and researching and learning as much as one can before making any decision - and even more so for one so monumental. Having said that, every ounce of peace I had went away when I started questioning it. After speaking with her doctor, hearing what he had to say and deciding to continue with his recommendation the peace has returned. I can only believe, with hundreds of people praying for us, that this peace is something to be trusted.
Being a parent who believes in co-sleeping, extended breastfeeding, delaying immunizations, avoiding medications and eating whole foods (when the kids would eat them anyway!) the decision to have her lymph nodes removed and then giving her interferon is not one I go into lightly. I wish it were cut and dry but it is not. We have to make the best decision we can and like Catherine said, we can't look back. If we don't do this, I KNOW I will continue to look over my shoulder.
I thank you all for your prayers, well wishes and support.
“MD Anderson is a good place, but if they continue to use Interferon there should be some questions asked. What do they hope to achieve, it only at most extends the time for recurrence in 8%? What will the long term affects be on this child? Will she lose fertility, have problems with depression, etc? Not only does Mayo clinic not prescribe interferon, neither does SLoan Kettering, UPENN, or Johns Hopkins, all the cream of the crop melanoma centers. The latest research confirmed that interferon did not extend longevity, and that one month was as effective as one year. There are pharmaceutical politics that play into this and this drug has lost it reputation for treatments in other disease groups. I would DEFINITELY get another opinion from a top notch melanoma center before you proceed.”
“It comes down to this for me... if we did not do it and it comes back, could I forgive myself? I could not. I will still question it and speak more with her doctor but ultimately, I think I will have to do it. The rest is in God's hands.”
“You can't look back on your decision once it is made. I remember the newscaster, Sam Donaldson and what he said when he made the choice to NOT get interferon. He said he's never looked back on it. The pros and cons should be weighed. The overall efficacy of the drug is very low, if it is coming back, it will come back either way, with or without interferon. The drug is only proven to extend the time for recurrence and a short amount of time. The bottom line is it does not extend survival time. I would certainly have a pediatric oncologist weigh in on it.”
“If what you are saying is true Catherine, then WHY would her oncologist say that he would give his own child this drug if she had what Rachael has? I cannot imagine he would go that far for a financial kickback. If it's so clear, then there wouldn't be a question.”
“I have no idea why the oncologist would say that. I have talked to many specialists in melanoma about your situation and they say the opposite. No one knows what interferon will do long term to a child. DIdn't your oncologist say it has only been prescribed to 100 children total? We do know the small margin of benefits this drug has and it is not a good trade off for any age. But many docs go by the book, this is an FDA approved drug for stage 3. They don't look outside the box and feel prescribing "something" is important. Watch and wait is equally good without worry of long term side affects. I can tell you for certain that the following top institutions for melanoma treatment do not prescribe interferon: MAYO Clinic, SLoan Kettering, UPENN and Johns Hopkins. I would certainly look to another institution for an opinion if I were in your shoes and make sure they were a pediatric oncologist with melanoma specialty.”
“A recent prospective trial of adjuvant interferon treatment was conducted for 15 patients with stage III pediatric melanoma.65 Of these 15 patients, 9 completed the therapy and 2 recurred during therapy. Pediatric patients suffered less toxicity than adults, mainly neutropenia.
Another recent report examined the use of highdose interferon in 6 pediatric melanoma patients with metastatic disease on sentinel lymph node biopsy. Five of 6 underwent complete lymph node dissection followed by high-dose interferon treatment. Four of the 5 completed treatment and were in remission at the completion of the study with a median of 26 months follow-up, and 1 was still receiving treatment. Dose adjustments were required in a significant number of patients: 2 for myelosuppression and 2 for abnormal liver function tests.
In summary, while the impact of this treatment on recurrence and survival remains to be determined, it is feasible to offer interferon to pediatric patients.” (Bold mine)
"Spitz melanomas are completely benign (non cancerous). If left alone they will cause no harm but because they are difficult to tell from malignant (cancerous) melanomas they are often removed for examination under the microscope, to confirm the diagnosis. Once removed the problem is completely cured and will not come back.
Very rarely a cancerous (malignant) melanoma can look like a Spitz melanoma. When this happens the tumour is sometimes called a Spitzoid melanoma. Spitzoid melanomas behave like other malignant melanomas."