Happy Halloween

James at the clinic


James and his sister Adrianne



Dr Wells, James,and Lisa

Today was a pretty quick day at the clinic. James went in his doctor costume because we are not going trick or treating tonight(I can get away with that right now!) We found out that his liver enzymes have gone back down. His doctor is very puzzled by this so he wants us to see a liver specialist. I ask him if I should worry--he said "let us worry about it right now".

We left the clinic knowing his hemoglobin and platelets were fine. I just got off the phone with Lisa and James' ANC is 290. They are holding all his medicines for a week where we will recheck his counts. James is very susceptible to fever since he has very little to fight with.

Please pray for James-that he will be free from fever, that we can resume chemo next week, and that the liver specialist can tell us whats going on with his liver. Thank you!

Fun at the Park

We had a great weekend. The weather was beautiful and we took James to the park. It was great because we were the only people there so we didn't have to worry about germs from other children.

As you can tell Adrianne was absolutely exhausted from out time at the park.

Please continue to pray that he will have minimal side effects from the chemo, that his liver enzymes will return to normal and they can find the problem, and that his counts come up.

Thank you so much!

Liver Enzymes Back Up

We headed back to the clinic today for what is Day 36 in interim maintenance. We will go through day 50 and then James will get a week to recover before starting his next phase Delayed Intensification. We had a later appointment than usual which meant alot of waiting. They took us back for his IV antibiotics and realized that his port hadn't been accessed. So Grandad and I had to hold him down. The way it was done today broke our usual routine thus James had a harder time. We got the labs and IV medicine and then the doctor came to see him. James had lost some weight since last week but she didn't seem concerned. They only had the preliminary results of his blood work when we left so they called me at home. It turns out that James' neutrophils are 810 which means he is neutropenic. They also found that his liver enzymes were elevated again. Because of this, tonight he didn't get one of his oral chemos. They are going to repeat the blood work next week and also check for hepatitis(they want to rule it out). If they don't get any better we will see a special doctor at MDA.

Prayer requests:

1. Pray that James' liver enzymes will return to normal and that they will be able to pinpoint the problem.
2. Pray that his counts remain stable--His neutrophils need to be 1000-1500--if they consistently are lower they will adjust his medicine.
3. Pray that he will have minimal side effects from all the drugs-He threw up twice on Monday and we are constantly trying to figure out what is wrong.
4. Pray that James will have a better appetite. I can hardly get him to eat anything!
5. Pray for Adrianne- she is not sleeping good at all and she wants to be held 24/7 which is especially difficult when James doesn't feel good.
6. Praise-the results from his LP last week showed no evidence of leukemia in his CSF.

A Trip to the Hospital

For the last five days, James has been on steroids and with that comes nasty side effects. On Friday after Greg got home he was playing with James and they were having a great time. Greg went to pick him up and James threw himself back and hit his head on the tile. We watched him and he seemed fine. On Saturday he was acting more tired than usual and didn't have much of an appetite. We debated all day whether to call MDA or not. We finally decided to call around 6:30pm and explained all the symptoms. At 8pm the doctor called us back and she happened to ask--has he hit his head? Greg said yes-On Friday but he seemed fine. We truly thought he was OK but the doctor wanted us to bring him in to make sure. So about 9:30pm we head to MDA. Greg's parents were already at our house because we had gone to dinner with some friends. We get there, they check him out and take some blood. His counts looked great and the doctor attributed his symptoms to the effects of steroids. So we pulled up in our driveway at 2am. We were all exhausted but I am glad we got it checked out. We head tot he clinic on Wednesday for our regular appointment. James finished the steroids yesterday and has already begun to return to our sweet boy.

I do have to say-it never ends. This morning(Monday) during the storm the tree in our front yard decided to fall across our driveway barely missing our house--things wouldn't be normal without something going on:)

Steriod Crazed

Well we are right in the middle of James' 5 days of steroids and it is everything they promise it will be. The waking up in the middle of the night 5 or 6 times screaming, the walking around whining as you are trying to figure out what he wants, and the constant attention that he wants because he doesn't feel well all the while I am trying to take care of another baby. The positive is we only have 5 more doses to complete this round. Please pray for us because sometimes I find myself getting really frustrated and wanting to scream and then I remember-he has leukemia and he doesn't feel good and most importantly-this is just a season and we will move through it.

We covet your prayers-they lift us up and provide us with every ounce of strength we need.

Quite a Day

Today was a hard day for our little guy.

5:45-left for MD Anderson
6:45-arrived with a hungry and thirsty 16 month old and had to wait for them to open the clinic
7:15-accessed his port and got his blood for labs
7:20-back to the lobby to wait with a hungry and thirsty 16 month old
8:00-back to see the doctor and to get his counts-his neutrophils had gone up so he is not considered neutropenic at this time
9:00-take us for his spinal tap where he will get his chemo; by this time we have an irritated, hungry and thirsty 16 month old
9:30-wakes up from procedure and gets to eat!!!
10:00-head back to lobby of clinic to await more chemo and the flu shot-now we just have the irritated 16 month old
10:30- threw a fit in the lobby because I took a grape sucker away and he did his best impresion of a fish out of water, requiring dad to walk him out of the clinic to regroup
10:45-go back to get vincristine(chemo) and flu shot
11:30-finally got chemo and flu shot although he had to be stuck twice for the flu shot because he moved--lets just say he was not a happy camper
12:00-stopped by the pharmacy, gave him his first dose of steroids, and headed home

Once we got home we gave him some Tylenol around 1:30. He had a pretty good afternoon although he was a little fussy. At 4pm he got 2nd dose of steroids and had some dinner. At 7pm he got 2 oral chemos, Tylenol, and some Zofran(helps with nausea) and at 8pm we put him to bed. I have to say I am glad today is coming to a close!

A Great Cause

This year the Leukemia Lymphoma Society is hosting the "Light the Night" walk in the Woodlands. We are not going to be able to participate in the walk this year because of the stage of treatment James is in. My sister in law Steph got me connected to another mom whose son has ALL. Colin will finish his 3 year treatment this February. Colin's sister Maggie has put a website together to help raise money for the walk. I am including her link on here because this is the way we will be able to be involved this year and I wanted to give you the opportunity to be involved too.

http://www.active.com/donate/ltnHousto/2066_maggiecolin

A Great Weekend

This weekend proved to be quiet and relaxing. It is one of the few weekends that James has felt good. I wanted to share some pictures of him "helping" with his sister. He loves to go up and love on her while she is swinging. He also loves to take the pacifier out of her mouth and put it back in. Adrianne is not so fond of this play time. I hope your weekend was the same!

Not so fun times at home

Well we got home from the clinic and James seemed to be very tired and irritable. Even after a nap he wasn't acting himself. It wasn't long after he got up he got sick everywhere. The good news is he didn't get sick again but he obviously wasn't feeling good. I think he ended up going to bed at 6:40. I think the hardest thing for me in this "battle" is not knowing for sure if something hurts or he is nauseated. I find myself getting frustrated and then feeling incredibly guilty. Please pray for us-while he treatment is going well-things are pretty tough with the day to day activities. I spend alot of the day trying to figure out whats wrong-is he hurting? is he acting like a 16 month old does? is he still adjusting to Adrianne? Pray that I will be the mom that I need to be to him and Adrianne. Tomorrow is a new day:)

Fun at the Clinic

We are back from the clinic and it was a good visit. James ANC(absolute neutrophil count) was 800 which was up from last week. He is still considered neutropenic but we are able to proceed with treatment. Please pray that it stays up so that we have no delay in treatment. James also got his IV antibiotic. While we were there, Junction Jack (the Astros mascot) was visiting and so he came to James' room and signed a stuffed animal and Astros hat for him. James was a little apprehensive but he didn't cry. So for right now, its business as usual. We are beginning to adjust without Nana here. Granny(Greg's mom) has been coming over to help and keep us company. Greg and I are so blessed to have such wonderful families that are so supportive. I am including some pictures from the clinic playroom. James heads straight in there and goes to the kitchen to find the plastic chicken leg to hold on to. He walks around the whole time we are there with it in his hands.

Next week will be a pretty big week--he will have a lumbar puncture, get vincristine, and start steroids again(yeah!). Please continue to keep us in you prayers. We are truly grateful.

We are not alone

This was the first weekend without Nana. Boy what a difference a Nana makes. We dearly miss her encouragement and assistance, and we feel blessed to have had her be available as long as she was able. While feeling slightly overwhelmed, this weekend has proved to be okay. We have had a couple family walks around the neighborhood, run some errands to not-so-crowded places, kept up with household chores and entertained our children all the while. Woo! At times, we forget that James is neutropenic, but today we were reminded how quickly illness can strike when his neutrophils are low. He started the day waking up 1.5 hours later than usual. Great, some might think. But, this is really out of the ordinary. Then after taking in his morning milk, he promptly threw up. He really wasn't the same vibrant little boy today and despite us taking his temperature approximately 20 times, he did not have a fever. Praise God! We anticipate that we will be in the hospital sometime between now and January 15. Today just felt too soon. So, maybe he's fighting something, maybe he was mourning Nana's departure, maybe he was just tired today. It will likely be a guessing game each time, which is quite frustrating as concerned parents. Ultimately, I think that we will have to trust our instincts regardless of what the thermometer says.

Joy will be home alone all day with James and Adrianne starting tomorrow. Considering that I work late at the beginning of the week, and with James potentially not feeling well, this will likely be a challenge. I have such faith in Joy and her capacity to continue to be a wonderful, loving, and available mother and wife. Please pray for her as this new phase of care begins.

We continue to be blessed by the multitude of friends and family that provide food, lawn mowing, finances, a listening ear, and prayer. We truly don't know how we would manage without this support. Most of all, you have helped us feel close to the Community of Believers when we have been unable to participate in corporate worship. We miss church and know that it will be sometime in late January (at the earliest) that we can get back to church. We are so family-oriented too, and it has been so hard not being able to attend games and other events. Most of all, we know that this Thanksgiving and Christmas will be just our little 'ol family. While that's going to be challenge, we know that there are so many who have so much less. So, we are so grateful for the abundance of love that continues to be poured out. Thank you.

Our most recent prayer requests:
1. James will stave off fever and remain protected from bacteria and viruses that can make him sick.
2. Joy and I will remain well to best care for both children.
3. Joy and I would have discernment about how to best juggle work, potential hospital trips, and child care.
4. Joy will feel peace when managing child care, medicines, and household maintenance alone (during the day) for the first time on Monday.

Neutropenic?!?

We went to the clinic yesterday and had a good visit. The doctors are pleased with how James looks. We were able to get some of his counts before we left and they all looked good-hemoglobin good, platelets good, white blood cell count had gone down but it was OK. We also found out that James liver enzymes went down and so they were pleased(thanks for praying). They attributed the increase to the antibiotic he was on so next week we start a new antibiotic by IV that he will receive every 2 weeks. We also got a picture of what his next phase will looked like and I have to say I was a little discouraged-so I won't say anymore because it is still a ways off but you can begin praying for us.

When we got home the doctor called with his ANC count. It showed that his neutrophils were 750 which labels James as neutropenic. That means if he gets a fever then its an emergency. it also means that we will be confined once again to our house and having to limit visitors. So our big prayer requests is--Pray for James that he will be protected from viruses and bacteria so that we can continue along with his treatment. Also pray that his ANC would stay the same or go higher--if it drops more they will reduce his chemo thus causing a delay in treatment.

Pray for us tomorrow-we put Nana on a plane to head back to Tennessee. We are so grateful to her and her help and know that she will be back soon. James will definitely miss his Nana!

Fun Times

I wanted to include a couple of pictures with James and his cousin Taylor. They have had a great time together. Taylor and her family will leave on Wednesday and we will head to the clinic.

Prayer requests:

1. Pray that James' liver enzymes have returned to normal.
2. Pray that he continues to have minimal side effects from the chemo.
3. Pray that his body will be protected from sickness since we are about to enter a rough phase of treatment and the time of year when people get sick.
4. Pray for our upcoming transition(my mom leaves on Friday).

We love you and we are so thankful for you!