Ryan's Story

Update of 5-28-2004:

Hi everyone.

Just wanted to let you know there's been a change in Ryan's course of treatment.

He had been scheduled to begin his first stem cell transplant next Tuesday.

As I mentioned in my last e-mail, he had a lot of pre-transplant testing done last week. One of those tests is an MiBG scan. It's a bone scan that's done after an injection of a radioactive isotope. It's Neuroblastoma specific so NB is the only thing that lights up in the scan telling you everywhere NB is present.

While this scan showed an overall reduction in disease since his last MiBG in April, it still showed enough NB present in his pelvis and long bones that the doctors felt it was in his best interest NOT to go to transplant right now.

The pelvis and long bones are where the stem cells will go to set up shop and make new marrow/blood cells so you want those areas to be as disease free as possible.

We were given 4 options.

Two were experimental and meant travelling either to Philadelphia or New York.

Another option was just to stay with this protocol and proceed to transplant as planned.

The other option was to post-pone transplant and give Ryan two more rounds of chemo (3 week cycles) to further knock down the NB still in his marrow.

He would then go to his first transplant with the high dose chemo.

In his original protocol, the second transplant would also have been with high dose chemo followed by spot radiation in the original tumor area.

Now they're recommending full body radiation for the second transplant instead of the high dose chemo. This is the option we've chosen.

So, next Tuesday instead of going in for transplant, he'll go to the Jimmy Fund Clinic as an outpatient for day 1 of his chemo.

The good news is that the remainder of this round (4 more days I think) can be done at home with the visiting nurse.

These particular drugs do not have the type of side effects that need constant monitoring in the hospital (lilke blood pressure problems, heart and kidney function, etc.).

While what the MiBG showed is not the optimal situation, it's still not necessarily bad either. This MiBG scan was not available a few years ago so we would have just proceeded blindly to transplant. It gives us the opportunity to tailor Ryan's treatment to what's best for him.

The NB specialist we spoke with empahsized they are still proceeding with a cure as their goal. Another thing they mentioned was that because Ryan has done SO well with his treatments/surgery thus far, post-poning transplant for 6 weeks is not a concern.

Some kids take many more months to complete what Ryan has completed in 5 months. Waiting another 6 weeks is not detrimental.

On a side note, I know you all have been praying for Ryan and we're so very grateful for that.

Yesterday we learned that another Neuroblastoma child who had been cancer free for 3 or 4 years has just relapsed. He's 7 yrs old and his name is Sean Langley.

His mom is an amazing woman who has been very active in Friends for Life.

She very selflessly reached out to us to offer support and hope when we were in the beginning stages of this ordeal. Please keep Sean in your prayers too if you would. Relapse is rarely curable but miracles can happen.

Thank-you.

Love,

Norma