A Catch 22 - August 28, 2008
| Aidan continues to improve and has not had another seizure episode since yesterday morning. The small seizures that he has had are significantly less than what transpired last Saturday, and he is now even able to speak throughout them, but cannot control the movement of his eyes or extremities. His progress is such that the Doctors at Seattle Childrens are considering releasing him from the hospital tomorrow afternoon or Saturday morning. Although very serious, Thank God this ended up being something much less then what it first presented itself to be last Saturday. The exact diagnosis for these seizures is known as Posterior Reversible Encephalopathy Syndrome or PRES. This syndrome is a rare side effect of the steroids Aidan has been taking since late June. In simplistic terms, the steroids cause |
 Aidan Working Over Daddy from His Hospital Bed |
| hypertension which in turn causes the seizures. The very good news is the seizures are not directly attributable to Aidan’s tumor progression. The symptoms are totally reversible once the steroids are significantly reduced and the hypertension is brought back to normal. The good news does not come without some serious trepidation and Catch 22 that still must be overcome. The MRI taken in Seattle did possibly discover a small amount of bleeding within the tumor, but it also indicated the tumor is of the same size or smaller, and the area of enhancement signifying tumor progression was now no longer there. The Catch 22 is the Doctors are worried about the bleed and are now leaning heavily to taking away the chemotherapy that seems to have brought the tumor under control. Needless to say there was a lot of discussion concerning the plan to remove the chemotherapy and the family generally believes this would not be a good idea. It would be very difficult to rehash all the debating points that were discussed amongst the Doctors and family, but the bottom line is there is not definitive evidence that the area noted within the MRI is blood, there is no indisputable evidence that the chemotherapy caused it, and there is some anecdotal evidence that the chemotherapy is doing exactly what it was designed to do. After a couple of meetings with the Doctors, it was agreed that we would continue to reduce the steroids to get control of the hypertension and to eliminate the seizures. After approximately 3 weeks another MRI will be taken and if the apparent blood is no longer present, we will again discuss the continuation of the chemotherapy. While the possibility of no longer having the chemotherapy available is very disturbing, we will take the good news of Aidan’s improvement and pray to our God that the next MRI is definitive and will no longer show anything that resembles blood, and that our God will guide the Doctors into making the very best decision that will most benefit Aidan and help to ensure that he will be with us for a good long time to come. Thank you for your prayers and support during this very scary episode. Please keep up those prayers so that Aidan will continue to improve and the next MRI will be very convincing and lead to the very best decision for the benefit of Aidan. Aidan's Family | |
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Keep your faith in God and know that he will help you in all your tough decisions. We continue to keep you all in our prayers. We are making a trip to Mt. Angel Abbey near Portland and we will offer prayers for Aidan and your family. God be with you all.
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We are so glad to hear that Aidan is feeling a little better and they seem to have pinpointed what was causing his seizures. We will continue to pray for all of you as you face this latest challenge. Aidan and your family are such a wonderful example of courage,faith and love for our family.
The Reillys
Maria,Ryan,Maeve,Liam(dx DIPG 4/24/08)Owen and Aidan
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