I have felt very weary today, pretty much like the life is being sucked out of me. Do you ever have those days where you really don't want to do ANYTHING except stay in the bed?? I'm sure we all have. I've been in a Hillsong mood today, so I've posted a link to one of my favorite worship songs that helps build me up when I'm feeling low.
Noah was feeling fine this morning as we all got ready for work and school. He ate breakfast, played with his toys and put up a fight about what shoes he was going to wear. (Over the past few months he has become very interested in choosing his clothes for the day, so most days you can definitely tell he dressed himself!) He was very excited about seeing Ms. Elizabeth and his classmates, and they seemed excited that he made it to school today as well. Around 9:30 Noah got sick in class, and had a pretty bad headache. John brought him to his office; Noah requested all the lights be turned out and then took a nap. We were all disappointed that he wasn't able to enjoy the morning at school. After his nap he woke up feeling much better so we had lunch and headed to the hospital.
Our meeting with Dr. Reddy went just as expected, and we are left with pretty much the same options as we had after the last recurrence, minus surgery. 1. Noah qualifies for a phase I clinical trial that is available at the moment; it requires that he take one experimental drug along with 2 types of chemotherapy drugs and an antibiotic. Most doses would be administered at home (orally) with very few hospital visits. There are some likely side effects and as always a few very unlikely, but risky ones.
2. The second option is a chemotherapy that has had some success in children with medulloblastoma (another type of cancerous brain tumor) and would be given along with two other drugs (one is a chemotherapy and the other one is a type of drug that I'm not sure how to pronounce so I won't even try to spell it...). This treatment would require lots of time spent in the hospital to monitor his body's response to the drugs. 3. Thirdly, we could opt for no treatment for Noah, other than what he would need to make him comfortable. That could be steroids, pain medication, whatever would work for him. No one can give us an estimated amount of time that Noah would have if we choose this option, but today we were assured that Noah would progress gradually, and not as though a switch had been flipped, if that makes sense. John and I have already noticed that pattern over the past few weeks as his episodes of headaches and vomiting have been growing closer together.
Of course there are other "alternative" therapies out there and if we encountered one that appeared to be even somewhat promising (based on legitimate personal testimonies) we could consider those as well. In the beginning of Noah's treatment when he had his first surgery, then began his first chemotherapy regimen, we weren't really given any options because that was the typical protocol for his type of cancer. Sometimes that protocol worked, and sometimes it didn't. Now that Noah hasn't responded to any of the therapies that worked on other kids, the decision has passed from those who have spent years and years in medical training and research, to two people who have no medical background at all, but love and care for this child more than anyone else in the world. Geesh, this is hard. And I know we just went through all this three months ago, wrestling with making the right decision, choosing the right path, and that decision gave us 3 more really good months with Noah. So in order to make the best decision for Noah, and not for John and myself, we need lots of prayers lifted up once again for guidance and wisdom. To know that our family has so many people remembering us in prayer is absolutely amazing and encouraging...it fills me up on a night like tonight when I am just plain emotionally exhausted. John and I need some quality quiet time to ourselves to discuss and pray about our next steps, and one of us will post again when we come to a decision. I will do my best to keep you all informed of Noah's health, but by now you know I'm not one to update every day or even week if life is uneventful. So, "no news is good news" I suppose. Thank you so much for checking in on us, and keep passing the word to pray for another miracle for Noah!
"I will exalt You, my God the King; I will praise Your name for ever and ever. Every day I will praise You and extol Your name forever and ever. Great is the Lord and worthy of praise; his greatness no one can fathom. One generation will commend Your works to another; they will tell of Your mighty acts. They will speak of the glorious splendor of Your majesty, and I will meditate on Your wonderful works. They will tell of the power of Your awesome works, and I will proclaim Your great deeds. They will celebrate Your abundant goodness and joyfully sing of Your righteousness" (Psalm 145:1-7).
These posts are written by Noah's parents Jessica & John David Crowe. The default author is Jess, and those written by John David will be noted.