1/1/02 - HAPPY NEW YEAR! 82 lbs and going strong! The nausea medication in the a.m. seems to be working fine (and I am grateful to sleep through the night again). Timothy does say that it "always seems like there is something in my throat in the morning" that might make him throw up, but he hasn't. Tonight he wanted a grilled cheese sandwich for dinner and a salad. Then another salad, and another salad. Well, at least he's eating something healthy! Three salads of Romaine Lettuce, Feta cheese, Thousand Island dressing and Croutons! Love, Ginny
Monday 1/7/02 - Timothy was excited to get back to school today. He is off of the night time IV nutrition and IV nausea medication. He continues to do well and is not nauseous. We have an appointment Wed. with the Oncologist. The pick line can come out anytime now because Timmy is doing so well, but we want to make sure that Timmy won't need the hormone testing, otherwise we'd rather wait and let them use the same line so he doesn't have to get poked again. We'll find out more on Wed. I will be scheduling a hearing test for Timmy this month. We will need to check this every 6 months for possible after affects from the Chemo/Radiation. Thank you for your continued prayers. Love, Ginny
Thursday 1-10-02 - Timothy's appointment went well. He can have his pick line taken out at any time. We are waiting to hear from the Endocrinology office to find out if the hormone therapy has been approved. If not, Timmy will need the testing and we want to use the pick line. Love, Ginny
Wednesday 1/16/02 - Well, we've hit another little bump in the road for Timothy - he has Shingles! What I thought was an irritation to a tag in his shirt turned out to be a spreading rash. Thankfully, Timothy does not have the fever, pain, or major itching which often accompany shingles. We went to see the doctor today because when Timothy came home from school, it was obvious something was going on. His Oncology doctor said that this is not uncommon in chemotherapy or immune suppressed patients. Timothy spent some time at the hospital this evening receiving a medication IV to help. They want the first dose done at the hospital to makd sure he doesn't have a reaction, which he didn't. We are expecting a delivery tomorrow morning of the medication to be given to Timmy via IV (now we're thankful the Pikk line is still in) for 1 hr every 8 hrs. - I think for 2-3 days. Timothy will miss school for the next 5-7 days.
We were at CHOC yesterday for pictures for an article they will be doing in their newsletter about their Reintegration Program and Timmy. We saw our friends the McCauley's as they were just finishing therapy for Sean. Do you remember me writing about baby Sean? Well, he's not really a baby anymore, he's 2, but he will always be our Baby Sean. He is another brain cancer survivor. Because he was exposed to the shingles and he is just off of Chemotherapy like Timmy, Sean will have to go to the doctor tomorrow for a shot. We feel sad about that.
Thank you for your continued prayer. As you see, it is a never ending journey. Please specifically pray that we would get some answers from Endocrinology about Timmy's Hormone Therapy. Thank you. Love, Ginny
Thursday 1/17/02 - Timothy felt worse today. I guess that is expected that you usually get worse before you get better. He is still much better than the stories I have heard about other people with shingles. I guess they can be pretty painful. Timmy has been uncomfortable but we don't want him to take anything that might make him nauseous - and start that cycle again. His appetite is still good. The nurse came by today to show me how to work the new" syringe pump" to give Timmy's medication every 8 hrs. I.V. He will get this for 7 days. Tomorrow we have a follow up appointment with his doctor in the morning. Thank you for your continued prayer. Love, Ginny
Friday 1/18/02 - Timmy had his appointment this a.m. at the doctor's office and because his shingles are still spreading and more pronounced, the doctor wants him to go into the hospital where he can have a stronger dose of the medication. They will also give him something to help with his immune system (gama globulin). We will be there overnight, but hopefully home tomorrow sometime. Thank you for your continued prayer. Love, Ginny
Saturday 1/19/02 - Timothy is not any worse, but not better enough that the doctor wants to send him home today. We will spend another night as he received more treatment. Hopefully we'll be able to come home tomorrow. Timothy's pick line has 2 lines. One of them stopped working this a.m. It will not flush or draw. This is not a major problem as long as the other line continues to work. Please pray that we don't have complications with the other line. Thank you. Ginny
Sunday 1/20/02 - The doctor examined Timothy this morning and noted he looks so much better, however she thought maybe another night would be good. We asked (well, okay, we actually whined) to go home. I told the doctor that doesn't know me well and probably doesn't know we have done a lot of treatment from home. She agreed - Hooray! It means getting up at 1 a.m. to start the IV and finishing at 2, but that's okay with me.
The first thing Timothy wanted when he got home was homemade hot food. There's nothing wrong with his appetite, although they told him in the hospital they would have to keep him longer if he didn't start drinking more. This has always been an ongoing problem. Although you can usually see Timmy carrying his water bottle everywhere he goes, he simply doesn't drink enough and it shows up in blood work and urine analysis. I will need to reschedule Timothy' hearing test, which was scheduled for tomorrow, and he will see the doctor to follow up with the shingles on Tuesday. Oh! And great news! I know you've all been praying. You know the line in his pick that wouldn't flush or draw? Well, it is working again completely! Timothy asked the nurse yesterday to try to flush it agian, and it worked! The next hurdle that I would ask for prayer is for Timothy's hormone therapy. Please pray there would be clear lines of communication between myself and Endorinology and we would proceed with Timothy's treatment without further delay. We would like to remove Timothy's pick line ASAP. Love, Ginny