Friday 8/4/00
Yahoo it's Friday - one more week down!! Timothy continues to need a lot of sleep, during the day as well as at night. When he's awake and feeling well, we make the most of it. Yesterday a couple of his friends came over on the spur of the moment and had a Lego building contest. That was fun to see Timothy laughing, carrying on, and "competing" like a regular 9 year old. Timothy's Radiation Doctor did confirm today that the radiation can cause anemia. I just figured it was because Timothy was having trouble eating well. The anemia cannot be corrected by taking vitamins or iron - thus the transfusion last Monday. We don't know who you are because of "privacy rules", but we do know that someone has already donated blood in Timothy's name and we want to say THANK YOU! I double checked today how many more radiation treatments. I was told 11. That means we're looking at 8/21 as the last date IF all appointments can be kept and there are no complications. The Technician said not to plan on an exact date, but we are hopeful this is it and looking forward to vacation starting on the 27th.
God is providing! Timothy will be tutored at home by one of the teacher's from his home school, Chapman Hills. Susan Church has been in contact with Timothy since the beginning; encouraging and praying, and has offered to be his home school teacher until he is well enough to attend regular classes. We also plan to continue with Timothy's private tutor, Elaine Ogle who has become a dear friend and has been instrumental in Timothy's education this past year. Love, Ginny
Monday 8-7-00 - Timothy got to do some "running around" with his friend this past Sat. We went to Planet Kids. It was really run for him, but pretty exhausting as well. Timothy is maintaining the "pretty good" week we had last week after the Transfusion. Blood work today showed he is better and no infections! He's up 1 pound today. We're cheering for every pound. Will continue on the nighttime nutrician with vitamins, fat and such and the same medications. Still not eating/keeping down too much. Confirmation today that Chemo will also have it's last day 8/21 before the 30 day hiatus. What a celebration that will be. Timothy has come to understand and appreciate why he will be home schooled until he is ready to attend regularly, but his brotherTrenton (K this year) isn't so sure he wants to go to school if Timothy is going to be home! Love, Ginny
Friday 8/11/00 - Timothy is steadily gaining some weight back. Up to 73 lbs now. He is still on TPN (food in the IV) at night because he isn't able to keep a significant amount of food down, BUT, he had a great day yesterday. Was not sick even once!! The radiation is not as intensive as it was in the beginning, maybe that is helping. I have gotten a cold. That's pretty insignificant, EXCEPT I am afraid to get Timothy sick. I would appreciate your prayer for Timothy's protection from any germs. We are taking precautions with lots of hand washing, sanitizing and have even switched from hand towels to paper towels. Thank you for checking in. Love, Ginny
Wednesday 8/16/00 - Timothy is holding steady at 73 lbs. We continue on the TPN. Timothy had his last infusion (for a month) of the chemotherapy drug this past Monday. He will have another appointment on 8/21 and hopefully have his needle taken out and not need the IV nutrician. 8/21 is also the last day of Radiation. My cold is gone and Timothy did not get sick, nor did anyone else in the family - Horray! CHOC told me 3 people have already donated blood in Timothy's name. THANK YOU!
Monday 8/21/00 - Today was a big day. Timothy had his last radiation appointment. The people there have been so kind. Timothy had a great weekend and set a new record, 2 days in a row without getting sick. His Doctor agreed to take the needle out and see how he does on oral medications and without the nighttime nutrician and hydration. Timothy gets a break now from Chemo. He will have lab work done in a couple of weeks and also a hearing test before his next cycle starts. The next cycle will consist of 8 - 42 day cycles. New drugs will be given, a more intensive treatment which will require two 24-48 hour hospital stays during each cycle. We are trying to keep Timothy focused on his time off and not worrying about the next step. We are praying that this will be a time for Timothy to have FUN, regain his weight and strength and build up emotionally and spiritually in order to face the coming year with perseverance and courage. Love, Ginny
Monday 8/28/00 - Announcing a new record, Timothy went 3 days in a row without getting sick. Yeah, Timothy! Timothy has been off of intravenous nutrician and hydration for 7 days, now. So far so good. This morning, Timothy is waking up on his Grandpa's houseboat. With his needle out, he will actually be able to go swimming. I hope he has a wonderful time.
On Friday, August 25th, Timothy came over to our house to play. I think it was the second time he has been over, since the tumor was found. Thank goodness for the current kid fade of card collecting. Timothy and his friends can look at cards and discuss them for a very long time. He can be in "the thick of things" with the other kids and can do it without exhausting all of his energy. After the cards, they moved on to playing hide-and-seek inside the house. Timothy's physical therapist would have been proud of him. Every few minutes, Timothy would have to get up and find a new hiding place. He was "it," too, and had to climb stairs and search the different rooms in the house. It was great to have him over and watch him play. It added so much perspective to my day. It is hard for me to stress about the worldly things in my day if I have the right perspective.
All of Timothy's buddies are getting ready to go back to school. Tim's school starts on Sept. 7. I hope Tim will not feel too badly about not going. I certainly will miss seeing him at school, but I know he has to work at getting well, right now. When he does go back to school, I know all of his friends are going to be so happy to see him.
I don't know if I will be hearing from Tim, while he is with his Grandpa. We may have to wait until the end of the week for an update. Carol L.
Wednesday 8/30/00 - Announcing a new record, Timothy went 4 days in a row without getting sick. Yeah, Timothy! Carol L.