Dealing with everyday life

I know several of you come and check the blog everyday for updated information. I have to apologize for not writing everyday-time just gets away. We were able to go to church on Saturday night. It was great for Greg and I to get out and also for James to go to his class. Adrianne being only 3 weeks old stayed with us during the service. James had a great time in his class and did very well considering we haven't been in over 2 months. He was glad to see us once the service was over!!

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.

Update to the Update

Thank you so much for your prayers. We got a call from the doctors office yesterday with good news and bad news. The good news is that they check her potassium and sodium and both were normal. Praise God! The bad news is that the hospital didn't get enough blood to run the other tests so I had to take Adrianne in again. This time we went straight to the lab were someone was waiting to help us. We got there before the courier came so that her blood went out yesterday and the test will be run on Monday. This particular test is testing the hormone levels. Pray that it is normal.

Thanks again for your prayers and I will update you when we know something.

Update

I wanted to let you know what we found out from the doctor thus far. She called yesterday to let us know that she received all the results from the newborn screen and that Adrianne's CAH levels were slightly elevated. She said we would do follow up blood work which we did yesterday afternoon. After three sticks in the doctors office we were sent to the hospital lab for a fourth stick. Please pray they got enough blood to complete the test. I don't want to have to take her back in and repeat the process. As hard as the afternoon was for me and my mom, Adrianne was a trooper. A couple of test that they are doing will be ready by today and one test has to be sent off so we won't have results until next week. Please pray that it was a false positive and that we will be done with this.

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.

Prayer requests:
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.

Much Needed Prayer

I just wanted to write a quick blurb to ask for prayer. James had an appointment yesterday at MDA, and we found that the upcoming treatment is not what we had thought. It was a simple misunderstanding, but anyway, James will have a brief respite from intense chemotherapy until next Wednesday. Then chemo intensifies and new chemo drugs are introduced. His counts will drop again during this time and he can potentially get sick (leading to hospitalization). Thus, we will not be able to travel during Thanksgiving or Christmas to see Joy's family and we will not be able to return to church anytime soon. Though we are sad, James' wellness is our first priority. We will be posting more about his upcoming treatment schedule soon, but on to the second prayer request.

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!

Pops in the house!

We are so thankful that Joy's dad, AKA "Pops," is able to come visit for a few days. He arrived late yesterday afternoon and is here until late tomorrow night. It's always fun with Pops because he brings a smile and a laugh just when we need it most. Most of all, he has been quite the trooper allowing us to hijack Nana for such a long time. I am sure that it has been hard not having his loving wife at home.

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:

1. Adrianne continues to have longer periods of sleep.
2. We are able to better decipher James' whining (chemo related? jealous of sister? just being a 15 month old?) and have patience!
3. James' blood counts continue to remain stable and he continues to positively respond to treatments.
4. James gets all of his medicine each time given.

Settling In

We went for James' appointment yesterday and all went well. They are very pleased with his progress. Next week we will find out about the next phase of treatment-maintenance. We are very excited about this phase because we will be able to resume some normal activities. maintenance will be the phase we are in through the rest of James' treatment(three years). there will be various times that we will ramp up the chemo to insure that the leukemia doesn't come back. There will also be times when his counts will go low and we will have to keep him away from large crowds and sick people. In fact, our doctor told us that typically kids in maintenance don't look sick. They begin to grow their hair back and feel good. We are very excited about this phase.

Things are going good around our house. Adrianne is adjusting a little better although she still doesn't like to sleep at night. i wanted to share some pictures I took today of James and Adrianne. James definitely loves his little sister and I know will be a great big brother.

Back in the Saddle Again

I officially returned to work in Tomball ISD today after a week off with the fam. Thus, the extra pair of hands assisting with a newborn and a 1-year-old were missed. Thank goodness Nana is still able to be with us and family and friends are continuing to be readily available to offer a helping hand when needed. Joy mentioned today that managing a newborn and a 1-year-old is quite possibly the best diet plan ever!

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:

1. James will have a safe LP at MD Anderson tomorrow (Wed) morning.


2. James' blood counts will continue to remain stable (allowing for a much better quality of life for all of us)


3. Praise! Adrianne has exceeded her birth weight (by a few ounces) in just over one week of life!


4. All of us (especially Joy and Nana who are sacrificing much sleep) get much needed rest.


5. 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!