From Connor's Mommy!

www.teamconnor.org

We've had a roller coaster of events the last few days. I'll start with my thankful praises first. I'm just amazed to see any improvements at this point. Connor's appetite continues to improve. He's hungry almost all the time now. He's so excited. He keeps saying, "I think my appetite is back." This has changed quickly. A week ago Friday, he wouldn't eat or drink anything. This week has brought big changes in his appetite.

Secondly, his breathing and oxygen levels are much better. 4 weeks ago, in Plano Presby Hospital, his oxygen levels were around 88. That is why they recommended the oxygen at home. Now, his oxygen levels are around 94-95. Isn't that amazing? His resting heart rate was in the upper 140's. Now, it is around 115 (normal range). Also, the swelling continues to decrease on his legs. The water is coming off his legs so quickly, there are usually small puddles at his feet. His back is more comfortable when he sleeps now. There's no other explanation for these changes except that the tumor is shrinking/softening and relieving pressure on his lungs and blood vessels. Also, his white count continues to soar. It was up to 46,000 and is now at 40,000. Patients with this amount of tumor burden usually have a very low white count. Praise God for all this!

WE are just show shocked and overwhelmed. After almost 6 months of a downward spiral, we just keep pinching ourselves that we are actually seeing the EVIDENCE of improvement. "Now faith is being sure of what we hope for and certain of what we do not see." Hebrews 11:1 It's so awesome to finally see some evidence of what we've been believing for so long. Don't get me wrong. I know we still have huge hurdles (MOUNTAINS) to climb, but it is so encouraging to be going in the right direction.

Now, for the new prayer requests. We've been having problems with Connor's feeding tube. It's been leaking. The swollen stomach pulled the skin away from the tube, causing a leak. The leak got worse and the hole got bigger. Last night, the feeding tube was dislodged ( and out came all the food he'd just eaten). We rushed down to Children's ER. The surgeon looked at it and he just pulled the tube out. Right now, Connor has an ostomy bag to collect the food he is eating as it come out this hole. It's quite an interesting site. About 30 seconds after he eats something, the food comes out this hole. PLEASE PRAY WE CAN GET SURGERY SCHEDULED WITHIN THE NEXT TWO DAYS TO CLOSE THIS HOLE. He's getting no nutrition right now. Monday, Home Health is supposed to hook Connor up to TPN (nutrition that goes directly into his blood stream). This TPN with Connor's increased appetite should help him gain his weight and strength back. His face is so thin, it is shocking the first time you see him like this.

Secondly, his sodium is really low. They kept him overnight to see if they could raise it. The sodium level didn't come up much. We understand why it is low - he's sweating out all this fluid and losing salt this way and his food just leaks right out of him. We just don't know why the sodium level won't rise. PLEASE PRAY THAT THE SODIUM LEVELS WOULD RISE. Low sodium will make him at a risk for seizures. He should be coming home this afternoon.

Thank God for his wonderful grace and mercy and Connor's improvements. Please continue to pray for old and new prayer requests.

1. complete healing on earth
2. tumor shrinkage
3. his breathing and heart rate would stay in the normal range
4. his appetite would continue to increase
5. sodium levels rise
6. surgery soon to close the hole in his abdomen.
7. Glorify God through all this!
8. Grace to get through each day.

"They loathed all food and drew near the gates of death. Then they cried to the Lord in their trouble, and He saved them from their distress. He sent forth His word and healed them; He rescued them from the grave. Let me give thanks to the Lord for His unfailing love and His wonderful deeds for men. Let them sacrifice thank offerings and tell of His works with songs of joy." Psalm 107:18-22

Always believing,
Joy Cruse