Fri, 12 Nov 1999 03:02

Total craniospinal radiation

Our faithful family and friends,

I will start with the positive and end with the rest.....MUGA showed Logan has excellent heart functioning (the high dose cyclophosphamide chemotherapy from Oct 17 & 18 did not damage his heart) Ankle x-ray was negative - no bones broken or fractured. MRI results showed a 50% reduction in tumor size in the optic chiasm region. The two smaller lesions in the spine also shrunk significantly; however, the larger 1 cm lesion showed no response to the cyclophosphamide.

We have had two long and exhausting days. On Wednesday, Logan and I spent the entire day at Duke for several tests: MUGA, right foot and ankle x-ray (he has been complaining of pain), and total spine and brain MRI (with contrast). As usual, he stayed perfectly still for the 3 hour MRI - without sedation and was awarded a squirrel beanie baby named 'Nuts'. What will they do after December when all beanie babies are discontinued?..........was the big topic with all the MRI folks (on a lighter note).

Today was supposed to be a short, standard (6 week post radiation) checkup with his radiation oncologist; but, it ended up being several hours (11:30 - 3:30) of dealing with the difficult issue of a treatment change for Logan. Basically, the radiation doctor said that in the light of Logan's diagnosis of metastatic disease (tumor that has spread) she could not offer her services to us anymore (we would have to find someone else to do the radiation part) unless we opt for radiation to the entire brain and spine (which we have been trying to avoid as it will cause neurological deficits i.e. IQ in 60-80 range along with countless other side effects). After this meeting, I took the boys (Adam was with us as it was supposed to be a very short day) over to the pediatric speciality clinic to seek out Logan's chemo doctor to let him know what the radiation doctor had said. To my amazement and discouragment, Logan's chemo doctor was now echoing the radiation concept (while only a few hours earlier he had even left a message on our machine about the positive news from MRI and the upcoming chemotherapy being scheduled) I questioned him about his reason for changing his mind. After an hour of talking, (chemo dr) he and I realized that we had had a gross misunderstanding starting on October 14th MRI when Logan was re-diagnosed with metastatic (spreading) and recurrent brain tumor (medulloblastoma). He had thought our main goal for Logan was to avoid craniospinal radiation no matter what. While we were operating under the premise (from before spread) that there was only a 10% difference in the success rate between the two treatments (BMT v. tot rad). It was during this conversation that I learned there is basically a less than 5% chance of survival for a BMT alone with Logan's new diagnosis. I asked him why he would have been willing to try this for so little success and he said he was doing what he thought we, the parents, wanted. He asked if we would be willing to care for a child with lots of problems (from radiation) and I said I would be glad to. He said he didn't know if he himself would want to. While it was good we gained understanding, it was very disturbing to realize we could have continued this misunderstanding further (at Logan's expense?). Before I left (with screaming and fighting boys that had missed lunch and a nap and it was after 3pm) I said: I hadn't asked you about your beliefs (He is from India); but, that I wanted him to know that we were and have been praying for him for wisdom. And also that no matter what happens we have the confidence that God has promised to walk beside us through everything. He responded that he is God's instrument. I thanked him for his time. He responded as he always does: 'Don't thank me, it is my duty'. I just thought I would pass on the interesting phrasing.

We still need to finalize treatment decisions. We have until next weekend (Nov 21st). We probably won't do another treatment of cyclophosphmide on Nov 19 as previously scheduled. In the meantime, we are continuing with phoresis (They will be able to freeze and store these cells along with his bone marrow up to 7 years if he ever needs them.) next week because a bone marrow transplant may be required in addition to total craniospinal radiation.

I think I have experienced every emotion possible today. It has really helped just to write it all down; plus, it is so complicated; I doubt, I could even explain this to more than 1 person per day. Am I even making sense (It is now 2:44 am on Friday)? Thank you for praying with us. We really need your prayers more than ever.

Prayer Requests (Ask Seek Knock for Melanie my BSF leader): Especially pray for wisdom and good communication for doctors and us. That God will direct the Doctors and us in making the best possible treatment choice for Logan. Peace for treatment decisions. Also, protection for Logan's eyes. Tumors will continue to shrink and will not grow (he won't be on chemo this week). Don't forget about TBH!!!

This seems an unlikely verse to use, but this is the first verse I ever memorized and it popped into my mind as encouragment during some very discouraging moments of the day. So, I will share it.

1 Corinthians 15:58 Therefore, my beloved brethren, be steadfast, immovable, always abounding in the work of the Lord, knowing that your toil is not in vain in the Lord.

Even changing a diaper can be the Lord's work :)

Thanks again for praying faithfully for Logan,

Laura