Wednesday, September 26, 2007
He was a "ham" again today. Everybody is so impressed with what a big boy he is. In fact when you ask him how big he is he throws up his hands in the air and we say "so big" (thanks for teaching him that Aunt Julie). After taking a ton of pictures I got some with him showing how big he is. He had gained some weight which was also good.
James has become quite a "reader" and I wanted to share some picures of him "reading".
We are now looking forward to his cousin Taylor, his Aunt Mary Beth, and his uncle Drew coming for a visit at the end of the week. Thank you for your prayers. We love you all!
Monday, September 24, 2007
Thursday, September 20, 2007
Its days like today that I smile for James doing the normal boy things. In fact as I sit here to write this entry, he is tearing the Pottery barn catalog to shreds and I caught him trying to eat the paper.
Hope this makes you smile and give you a glimpse of our "normal" day. Thanks for continued prayer.
Wednesday, September 19, 2007
We had a great visit at the clinic. James counts were very good which enabled him to get his vincristine. He was quite the talker today and walking around the clinic as if he owned it. He didn't cry when his doctor examined him-which usually is a fight. He waved hello to all the doctors and nurses that came by. He had lots to say about today just no one was able to understand it!
Being in the clinic today makes me thankful of our circumstances. James has responded so well and the cancer he has is so treatable. It breaks my heart to see other kids who are not doing as good. One thing this journey has taught me is that no matter how bad we think our circumstances-we have it easy compared to some. I thank God that He has carried James thus far through his treatment, that he has had minimal side effects, and that he hasn't lost that sweet sense of humor. God is faithful even when we feel our world is crashing in on us and we wonder how we will get through the next day not to mention the next three years.
So thank you for being faithful prayer warriors on our behalf!
Tuesday, September 18, 2007
We are doing good trying to adjust to everyday living. James' counts remain good and we head to the clinic tomorrow to start the new phase. We still are waiting for the last blood test on Adrianne. Hopefully we will know something very soon although I am fully anticipating things to be fine.
We have had some answers to our prayers. James gets better every day taking his medicine. Pray this will continue, we start the dreaded steroids tomorrow(only for 5 days). Also he has been sleeping much better. He is almost back in the routine he was in before he got sick. Please pray that this will continue. As you know he is in much better spirits when he has had enough rest. I unfortunately can't say the same for Miss Adrianne. She sleeps pretty well until about 3 am and then she is wide awake. I know she is barely over three weeks but I am very anxious for her to get into a routine before my mom leaves-so please put that on your prayer list as well.
Thanks again for you support, meals, encouragement and most of all prayers. Thank you for being a part of this journey with us.
Saturday, September 15, 2007
Thanks again for your prayers and I will update you when we know something.
Friday, September 14, 2007
At our clinic appointment on Wednesday, we got the road map(calendar) for James' next phase. As Greg posted earlier we were a little disappointed because we thought we were going into maintenance but the phase is actually called interim maintenance. This phase consists of the 6MP which he has been taking and will continue to take for three years every night. Praise God James has finally started taking this well. He opens his mouth and lets me squirt it in and then I give him water. Keep praying for this to continue and that he would take his Bactrim that good.
He will also be giving burst of steroids during this phase. We will start next Wednesday and he will take them for 5 days and then take them again for 5 days in the middle of the phase. We will also be giving him another oral med once a week called methotrexate(which is the same med he gets when he has an LP). he will not have to have an LP until day 29 of this phase so we have a little break from those. James will also get vincristine through an IV a couple of times during this phase. This phase last 57 days and then we will enter into another phase called delayed intensification.
Delayed intensification will last about 60 days and James will be introduced to new meds and higher doses of chemo. They fully expect his counts to bottom out during this phase. This will happen over the Thanksgiving and Christmas holidays so we were very disappointed we can't travel this year but like Greg said James health is the utmost importance. I will have more specifics on this phase when we get close to completion of interim maintenance.
1. The tests for Adrianne will come back normal.
2. Adrianne will begin to sleep better at night instead of during the day.
3. James will continue to do well with treatment and taking his meds at night.
4. For Greg and I-these last couple of days have been very stressful-pray that we continue to have time for one another in the midst of taking care of our kids.
5. Pray for a better established routine for James and Adrianne because Nana leaves in a couple of weeks.
Again we appreciate your love and support during this difficult season of our life.
Thursday, September 13, 2007
We received a form letter yesterday regarding the newborn blood test that was performed on Adrianne one week after birth. This letter said that she may be at risk for Congenital Adrenal Hyperplasia (CAH). This is not good, and this letter is not a confirmation that she has CAH. We will likely need further testing. PLEASE pray earnestly that this test is WRONG and that Adrianne does not have CAH. As I write this, my heart is heavy and we feel overwhelmed. We know God is so good and in control. We have to give this to Him because we are truly unable to take this on without Him. We will keep you updated as we find out more. Thank you for your prayer and ongoing support!
Sunday, September 9, 2007
So, we are just chillin' at the house this weekend and enjoying family. We are continually blessed by your words of encouragement, prayer, and well wishes. We miss church so much and look forward to the coming weeks when we are able to return! James is looking as full of life as ever and is so much fun. His (i.e., mostly my) favorite book is Pajama Time. He is loving being read to and tries to read along in his own special language. We knew that his treatments would result in regression in some areas, but he hasn't seemed to miss a beat. There are so many scary side effects to the many medicines that we are pumping into his body, but they pale in comparison to Leukemia. So, this is one more reminder that "control" is merely a fleeting idea and that we must entrust all aspects of James' development to the Lord. This, of course, is a daily struggle to remember this, but God is good and patient with us. Our most current prayer requests are:
- Adrianne continues to have longer periods of sleep.
- We are able to better decipher James' whining (chemo related? jealous of sister? just being a 15 month old?) and have patience!
- James' blood counts continue to remain stable and he continues to positively respond to treatments.
- James gets all of his medicine each time given.
Thursday, September 6, 2007
Tuesday, September 4, 2007
We are overwhelmed with how much the community of believers has banded together to walk along side us during this trying time. We are blessed indeed! I wanted to include a video taken with our digital camera, but I think that our technology is a little outdated so I wasn't able to include it. It depicted James and his two year old cousin dancing together to a dancing and singing Spider Man doll. It was a riot and I will keep trying to attach it to the blog. It offers a great picture of how chipper James feels right now and how much he loves his cousins!
From the video, you can tell James is feeling pretty good right now. That's a great sign considering that he is getting daily chemo and has to receive weekly lumbar punctures at MD Anderson. His blood counts were stable at our last visit, which is why we have video of a smiling and dancing James. Here are our most current prayer requests:
- James will have a safe LP at MD Anderson tomorrow (Wed) morning.
- James' blood counts will continue to remain stable (allowing for a much better quality of life for all of us)
- Praise! Adrianne has exceeded her birth weight (by a few ounces) in just over one week of life!
- All of us (especially Joy and Nana who are sacrificing much sleep) get much needed rest.
- Joy and I will continue to keep our pride in check and readily accept assistance when offered. We are reminded that God is glorified when His creation honors one another in His name.
Again, we thank God for the blessing of you. Keep us held in prayer!