Wednesday, January 30, 2008

He's a Champ

Well it was another record day at the clinic. We left at 6:15am and were home by 11am. James never ceases to amaze me. To give you an idea what a morning is like...I get him up about 30 minutes before we leave. Right before we walk out the door I have to put this numbing cream on the site where his port is so that it will be pain free when they access him. Usually this is a fight but this morning no complaints. We get to the clinic and they almost take us back immediately to draw his labs. This involves them taking the cream off, sterilizing it with alcohol, inserting a needle, drawing blood, and then flushing it. Again we usually get some resistance towards this process but today he sat there like a big boy and watched the nurse do the whole thing. Then we had to take vitals-he sat in my lap and didn't move a muscle while they got his blood pressure and temperature. Like I said, he never ceases to amaze me with his courage.

His labs looked great--hemoglobin 10.2, platelets 265, and his ANC was 2800. So we don't go back for another 2 weeks and at that time he will get vincristine and start steroids over again for another 5 days(yuk!) Thank you so much for your continued prayer and support.

Tuesday, January 29, 2008

Please pray

I am asking you to pray for our good friends Kim and Jeff and their 10 week old son, Brennan. He was admitted to the hospital on Friday and will be there for at least 3 weeks. Brennan has a pretty severe milk protein allergy but about a week ago he started having symptoms of a stomach virus. The combination of these two things degenerated the lining of his digestive system. The doctors didn't figure out what was going on until it was almost too late. By the time they were admitted to the hospital he was so dehydrated that his eyes were sunken and his skin wrinkled up. His diagnosis is intractable diarrhea. He can't absorb fats or proteins so he was actually starving to death when he was admitted.

He underwent surgery to put in a central line as well as a feeding tube that goes from his nose to his small intestine. He also had an endoscopy to assess the severity of the damage to his intestines. He came through the surgery fine and according to family the doctors thought things looked OK but will wait to see what the biopsy shows.

Pray also for their 3 year old, Tommy, who is at his grandparents in Nashville and having a pretty hard time. Pray for Kim and Jeff as they juggle their time at the hospital and their time at home with Tommy. Pray that the doctors have clarity and wisdom to treat Brennan. Kim and Jeff are very dear friends of ours and have walked with us through our trials and we want to do the same for them. Thank you.

We head to the clinic tomorrow so I will update after we get home.

Sunday, January 27, 2008

Our boy is returning!

I use this is a gauge to determine how James is feeling. It looks like he is feeling pretty good! We have had a great week. He has felt better this last week since he has when he first was diagnosed. He is talking non stop, running everywhere, and getting into everything. It has been almost two weeks since we have been to the clinic. We are scheduled to go this Wednesday where they will do blood counts, doctor's visit, and he will get his IV antibiotic.

Please continue to pray that the chemo does its job and his counts remain stable. Please pray for me as well. I get really nervous when I think about James going back into the nursery at church or going to school. I know I can't control what happens but any sickness could put us in the hospital. Pray that we will have the discernment to know when it is time. Thank you for your continued prayers and support.

Monday, January 21, 2008

A Great Day with a Great Appetite

Just wanted to share with you that James had a great day today. He also ate good-which is rare so I included a picture for you. His favorite words are "tank you"(thank you) and "that's cool". Hope you had a wonderful Monday!

Sunday, January 20, 2008

Oh how the body remembers!

Today is day 5 of our 5 days of steroids to begin Maintenance and today has been the hardest. James has constantly whined all day long. Thank goodness we give him his last dose tonight! And if having a steroid raged 19 month in the house wasn't enough, Adrianne decided to get sick.

Yesterday I woke around 6am to hear her coughing. I told Greg that we needed to take her to the doctor. I was tied up all day so Greg took her. He came home with a nebulizer, nasal spray, and an antibiotic. She has to do 2 breathing treatments a day as well as take an antibiotic 2x a day. My mom is coming in tomorrow so I am very thankful for the help I will receive giving all the medications. I'm starting to feel like a pharmacy!

Please pray that we will make a smooth transition out of the steroids and James will begin to feel himself. Pray for Adrianne that she will make a speedy recovery and respond well to her breathing treatments and medication. Thank you.

Wednesday, January 16, 2008

And We're Off

Today was a long but promising day at the clinic. We arrived around 8am due to the horrible Houston traffic. James was a little monster because he couldn't eat or drink until we knew what we were going to be doing. Everything today hinged on his counts. I am pleased to report his bone marrow is working very hard and he was able to start maintenance. His hemoglobin was 10.6, his platelets 465000, and his ANC 1400 which was enough for him to get his LP and all his chemo-and yes we are back on the steroid for 5 days!!!

James,of course, was a little champion by the time everything was done. We had to wait for his oral chemo to be compounded so he put on a show for the employees of the pharmacy. In fact he went up to a man in line and stuck up his arms for him to hold him-what can I say the kid has no fear!

Please pray for us especially for the next 5 days. You have been with us long enough to know steroids are no fun for anyone. Pray that he will have minimal side effects from all the chemo he had today. Also pray that his liver would be protected. We are back on the chemo(methotrexate) that caused his enzymes to get really high. Also I got a tentative end date-September 2010-please continue to walk with us down this long road ahead.

Some more good news--they don't want to see James back in the clinic for 2 weeks. I might go through withdrawal---just kidding!

Monday, January 14, 2008

Good Weekend

This weekend was a good weekend for James. Right now he is battling congestion and diarrhea and the dreaded diaper rash. The diaper rash is not as horrible as it has been but nonetheless bothersome for him. We are beginning to see glimpses of a toddler - the good and the not so good. We had a few fits over the weekend. When he gets really mad at Greg or me, he will scream like a banshee at us. For example, late Friday afternoon, James was in a brief time out and was fit to be tied. He didn't want any part of it, so he was screaming at us. We did the not-so-right thing and started laughing. I looked at Greg and said "you are not supposed to laugh, you're the psychologist." Oh well! Toddlerhood here we come!

Anyway, we are slated for a big day on Wednesday provided his counts are good. Please continue to pray for us as everyday brings about a new challenge.

Wednesday, January 9, 2008

On their way up

Today was probably the quickest clinic visit we have ever had. We left at 6am and were home by 10:30am. Everything looked great. His counts are starting to recover-his hemoglobin was over 9, his platelets 59000, and his ANC 320(we would like that to be higher!). Next week we are slated to start Maintenance if his platelets are 75000 and his ANC is 750-so who knows? If his counts are good enough next week he will receive...

lumbar puncture with chemo
vincristine through his port
start a 5 day pulse of steroids
take 2 oral chemos

So please pray that his counts recover and pray that he will have minimal side effects from chemo and steroids. I wish I had more to write but I am exhausted and I am going to take advantage of the fact that both kids are in bed!

Sunday, January 6, 2008

10 hours later

That's right 10 hours... We got in the car at 8:30pm and headed home. Although that is not what we had slated to do on Saturday, it was a blessing because of the new families we got to meet. I think I have said this before - even though we have to go down this road of cancer, I am so thankful for how well James is doing. In fact one mom told Greg during our last hospital stay, "You are lucky your son has leukemia." Her daughter was diagnosed with a very rare, nearly untreatable form of bone cancer. I wouldn't go as far as that to say we are "lucky," but I do feel incredibly blessed that he is doing so well. While we were at the hospital yesterday, there were a lot more families there with small kids. Even though I have a small child going through treatment, it's still heartbreaking to see other families coping with cancer and its horrible effects on their child.
James met a friend yesterday. They were so cute playing together. She is 2-years-old and it was so funny because she referred to James as "the baby." He's 19 months. I am including a picture of their time together. Her name is Alesandra; she is from Brownsville, and she is being treated for a brain tumor. She and James enjoyed pushing a toy truck back and forth and riding in a wagon together through the hallways of the pediatric unit. Alesandra loved to touch James' cute ears and his very bald head. We hope to see them again sometime in the future.

In Adrianne news...she is eating rice cereal now and I think she likes it!!!

Saturday, January 5, 2008

At the hospital

I wanted to take a couple of minutes and give you an update. As I write we are on the 9th floor at MD Anderson. James woke up today and was irritable and seemed to have more bruising. He also had blood blisters in his mouth. After talking with his doctor we decided to come in and check his counts. He also had an episode of throwing up but i checked his temperature and he was fever free. We arrived at MDA at 10:30 and they got his blood. His blood revealed that his platelet count was 3000 again and his hemoglobin had dropped. So now we are waiting for a transfusion. Hopefully we will be getting home around early evening but as we have learned so many times before-don't count on it! We would appreciate your prayers as James goes through another transfusion-that all things so smooth and he would have no reaction. Thank you!

Wednesday, January 2, 2008

Back from the clinic

Today proved to be a long but great day. We got to MDA and got James' blood drawn for labs and then waited awhile to see the doctor. The results of his blood came back and his platelets were extremely low--it takes 75000 to continue in a phase and James had 3000. His hemoglobin was 9.6 and his white count had come up to 1000 with his ANC 480. They gave him a transfusion of platelets along with his antibiotic. He was a champ today. He acted like he felt better. As you know we finished Delayed Intensification last night and there was a celebration. James just looked at us as Greg and I did a dance! We will know wait for his counts to recover before we enter the last and longest phase of treatment-Maintenance.

We have been looking forward to this phase from the beginning. There will most likely be bumps in the road and we will be reminded that James has leukemia BUT we will get to establish the "new" normal in our life.

We thank you for your prayers and we continue to ask for more. We love all of you and are so thankful for your love and support.