Friday, November 30, 2007

A Hard Night

We can see the finish line approaching with the steroids. Last night was a very hard night though and as a result I am tired. It started like this...

10pm-went to bed
11pm-Adrianne was up wanting to eat(she usually doesn't do this)
2am-James woke up crying and had to change his diaper
2:20-he goes back to bed and so do I
2:45am-Adrianne wakes up again to eat
3:00am-she goes back to bed and so do I
4:00am-she wakes up again only this time I rock
4:45am-in the process of Adrianne going back to sleep, James wakes up and I have to change his diaper again
5am-he is up in his high chair eating pretzels and ranch
5:45am-goes back to bed and so do I
6:30am-wakes up again and I have to change his diaper and this time we stay up!

So we could use your prayers today......

Thursday, November 29, 2007

Yesterday at the clinic

Forgive me for not posting yesterday but I was pretty exhausted. We got to the clinic to get James' chemo. All that went fine and we headed home. His bottom has gotten worse. Almost every time I change him, he bleeds. It's absolutely heartbreaking. He also hasn't felt well over the past several days. He wants to sit in my lap most times and doesn't want to play very much. The steroids are suppose to give him a huge appetite but so far he has been pretty uninterested in eating unless its pretzels and ranch. The steroids will come to an end on Wednesday morning and his body will be able to heal so hopefully we won't have to deal with the bleeding bottom too much longer. Please pray that it doesn't get infected. Please pray that his poops will be minimal so that he won't be in pain. Greg and I are truly in survival mode right now trying to make James as comfortable as possible. We also ask for your prayers to be the parents James and Adrianne need. Thank you.

Wednesday, November 28, 2007

Diaper Rash?!?

We are going to the clinic later today but I wanted you to be praying about something in the meantime. Because of the chemo that James is on and because of the steroids James has one of the worse "diaper rashes" that I have every seen. I even hesitate to say diaper rash because it is brought on by the chemo. The chemo burns his skin when its eliminated and the steroids are preventing his body from healing. So we are dealing with open sores on his behind that bleed. It's absolutely excruciating for James to get his diaper changed and excruciating for us to have to change it. I was also told yesterday that the chemo can cause mouth sores, throat sores and stomach sores that might be causing diarrhea frequently. They told me I would have to manage this "rash" until the steroids are over so his body can heal. I am not sure what to pray for-maybe strength to get through this last 6 days-for James and for us. Thanks.

Monday, November 26, 2007

Day 13 and counting...

I wanted to give you a quick update to let you know how James is doing. I say quick because both kids are asleep and I need to take the opportunity to take a shower! We are surviving on the steroids. Some things you can pray for are:

  1. James took a lot of chemo on Wednesday and its making him go the bathroom thus burning his skin-because he is on the steroids his body doesn't heal and its a battle every time I change his diaper. Please pray that his bottom wouldn't get any worse and when we are off the steroids it will heal up.
  2. Continue to pray that he gets adequate rest.
  3. James is also nauseated which has to be frustrating considering the steroids make him hungry but he feels like he is going to throw up(which he has over the past several days). Also pray he gets some variety in his diet-all he wants is yogurt, milk, and pretzels dipped in ranch.

Thanks for your prayers--we are almost there!

Saturday, November 24, 2007

Jesus Loves Me

Thank you for your continued prayer through this very trying time of treatment. We are doing everything in our power to try to make James comfortable. I was rocking him yesterday and singing Jesus loves me. We sing that song all the time to him and since he has been diagnosed it has taken on a new meaning. I can hardly get through the words now without crying.

Jesus loves me this I know
For the Bible tell me so
Little ones to Him belong
They are weak but He is strong

Yes Jesus loves me
Yes Jesus loves me
Yes Jesus loves me
The Bible tells me so

The song has a two fold meaning to me. Greg and I feel very weak right now in knowing how to best care for our son. James is weak right now due to all the things that they are putting in his body. Praise God that when we are weak-He is strong. God has shown Himself strong to us throughout this journey and He has shown Himself strong in James.

We are in the midst of Day 11. We covet your prayers and know we will get through this. We love you.

Wednesday, November 21, 2007

So Brave

Thank you so much for your continued prayer. We are "surviving" the steriod stage! Only 13 days left!!!! We had a great visit at the clinic today and instead of 13 hours it was only 7. James' counts were still good so that we can spend Thanksgiving with family. Today he has lots of drugs through his port. It is a very tedious process-first he has zofran(to help with nausea) then a flush, next vincristine then a flush, doxorubicin then a flush, finally pentamidine(antibiotic) and a flush. We ended the day with the second part of his flu shot which did not make him very happy.

I wanted to include some pictures from today. He is such a trooper and has gotten use to the whole process on clinic day.

Happy Thanksgiving!

Monday, November 19, 2007

Under Attack

Joy is currently at MD Anderson (MDA) with James. On the way to the appointment today, James became ill in the car and vomited all over himself and his car seat. Joy called, frustrated that she did not have a change of clothes. Even after encouragement from me, it doesn't take away the smell or discomfort that James is feeling. Then, as she arrived there this morning for a series of three shots, they required that he have a blood draw. This added at least one hour to today's appointment for Joy. This was supposed to be a quick and relatively uneventful trip today. We are learning that "supposed" shouldn't be in our vocabulary.

I just wanted to take a few minutes out of my work day to process some of the overwhelming thoughts and feelings that we are both experiencing right now. This blog provides such a great forum to pour out our heart to so many that care and support us through listening, encouraging words, and prayer.

This 21-day trial of steroids is emotionally and physically exhausting. James is in a constant state of unrest to the point that he doesn't seem to feel comfortable in his own skin. He cries and whines for hours at a time for 10 - 12 hours a day, and he is unable to communicate what he wants and needs, partly because he doesn't really know and partly because he isn't communicating through anything more than grunts, moans, and cries. He hasn't taken more than a 30-minute nap during the day, which only further complicates his feelings of frustration. Imagine your worst day - where you feel physically ill and in pain, where everything you try to accomplish ends in failure, and where you are trying to rely on others for support, but no one will listen. I really think that the steroids make James feel this way, and it's unbelievably frustrating that we are unable to help alleviate his pain. ON TOP of this our beautiful little girl seems to sense that there is unrest in our home. She cannot tolerate being put down for more than 5 minutes, and she is primarily demanding her mother to soothe her. I hurt for Joy that she has to go most of the week doing her very best to meet the needs of our children, keep up with the house, and support me. We are hurting right now and your prayers are so very needed. Luckily, there is some respite coming with the holidays, allowing me to be more available to help during this trying time. We try to remind ourselves that this is such a brief time in the grand scheme of things, but it so hard to remember that during this current trial. Thank you for being present with us.

Saturday, November 17, 2007

Please pray......

Please pray for us for the next 21 days. We started steroids on Wednesday and already James is having a hard time. I think yesterday(Friday) was one of the hardest days since he has been diagnosed. The difference from then and now is I have another child to think about and who needs me.

Please pray
1. James will have minimal side effects and he will sleep through the night.
2. Pray for me to have patience when dealing with 2 small children who need me.
3. Pray for Greg and I that we will communicate and not get frustrated with one another.
4. Pray for James and I as we head to the clinic on Monday for him to get chemo in the form of a shot-pray that he will have no allergic reaction.

Thank you all so much for your prayers and encouragement!

Wednesday, November 14, 2007

He's Amazing

Well today proved to be the longest day we have spent at the clinic thus far. Our day got started when we left at 5:45am to head to MDA with James, who couldn't have anything to eat or drink until after his lumbar puncture (LP). We arrived at the clinic at 7:00 and he got his blood drawn and then got to play in the playroom. We waited a little while and then we were taken back to see the doctor and get his counts. James' counts had recovered so that he could start the next phase-Delayed Intensification

Some things that happen in this phase(which is 60 days long) are:
Day 1-21-steroids morning and night
Day 4- chemo(peg asparaginase) that is injected by 2 shots into his legs
Day 1-8-15-two different chemos(vincristine and doxorubicin) that he will get in the clinic through his IV. Interesting tidbit - Doxorubicin turns pee bright red for 24 hours. Merry Christmas!
Day 1 and 29-lumbar punctures with chemo(methotrexate)
Day 29- we will be admitted to the hospital and James will be given fluids and chemo(cyclophosphamide)-this will be a new chemo he has never had and has some nasty side effects
Day 29-32 and Day 36-39-James will get one shot a day in his leg of Cytarabine(chemo)
Day 29-42-an oral chemo(thioguanine) that James will take every night
After Day 42 they will give his body rest for a couple of weeks so that it can recover. Whew!

We also found out that James' liver enzymes had come back down to normal and that it was in fact medicine related. They will continue to monitor his liver enzymes throughout the rest of his treatment. Please pray that his liver can safely metabolize the medicine--it is so very important for James to take all medicines related to his 3 year treatment to stay at the 95% chance of cure. I do not envy the doctors that have to decide between the likes of potential acute liver failure and relapse of leukemia. Pray for God's guidance of their decisions!

Around 9:30am we were taken to the procedure room for James to have his LP. We returned to the clinic around 11:30 where they began to do his IV infusion of immunoglobulins. That infusion ended around 4:30pm, and then they gave him his vincristine and doxorubicin. We finished up around 5:30 and returned to our home at 7pm-a fabulous 13 hour day!

James was a trooper today-he did everything they wanted him to with little to no complaining. We are so proud of how brave he is and so thankful for his sweet disposition and fun personality. Everybody at the clinic loves him and he loves them!

Please pray for us-we began steroids tonight and continue through Dec 5th. This will be a very trying time for our family because of how the steroids make him feel and act. Please pray for Greg and I to have the wisdom and patience to care for him during this time. We continually thank God for your love and support.

Monday, November 12, 2007

Playing together

We had a great weekend. We are sorry to see it end because they have to return home and the dread of what is coming. James will start Delayed intensification this Wednesday providing his platelets are at 75,000 and his ANC is 750. We counted it up and he will be doing 7 chemos, steroids, plus an IV antibiotic during the next 42 days. We have an incredibly long day on Wednesday where we will leave here at 5:45am and could possibly not return until 6 or 7pm. Please pray for us and especially for James. Part of me dreads this and part of me wants to get it done. I anticipate he will feel pretty bad so please lift him up. I will post after our day on Wednesday. Thanks for your prayers!

Saturday, November 10, 2007

James and Reid

We are so lucky to have James' Nana, Aunt Rebekah, and cousin Reid here. They got up at 3:00 a.m. this morning to catch the earliest flight to maximize their visit. It is so awesome to have them here. This weekend has started without a hitch! James and Reid have been great together and have enjoyed playing and taking things from each other. We attempted to put them down for a nap, but they did a wonderful job of tag-team crying and keeping each other up. Despite being two exhausted little boys, they had so much fun reconnecting. Here's a pic of them in the bath tonight:

Wednesday, November 7, 2007

An Exhausting Day

I have to say I am glad today is coming to a close. It was a very long day and next week will prove to be even longer. We got to MDA around 7:45am. The difference today was we brought Adrianne along. She was a trooper but I have to say it was alot harder keeping up with two. The doctors we pleased with James' counts. He wasn't on chemo this past week so his numbers are recovering. His ANC is up to 620 and they believe it will only get higher for next week. Next Wednesday he will start his new phase-Delayed Intensification.

We went to see the liver specialist today. They believe that the elevated liver enzymes are due to the medication he is taking. He will consult with James' doctor at MDA to come up with a plan. All the hepatitis tests came back negative so we are very thankful for that.

Along with the usual things James will get done next week(i.e. vincristine, a new chemo-doxorubicin, lumbar puncture, etc) he will get an immunoglobulin transfusion. Immunoglobulins(as best as I understand them) are the part of the blood that develops antibodies. Because of chemo, James' immunoglobulins are low so they will transfuse him to protect him. This transfusion lasts 4-6 hours and will happen after everything else next week.

On a happy note, my mom, sister, and nephew are coming in for a couple of days and we will be so excited to see them. I promise to post pictures of James and his cousin Reid.

Sunday, November 4, 2007

Bring the rain

Over the past few weeks I have thought alot about the last several months and we have a ton of people ask us on a daily basis how we do it.. The only explanation I have is through our relationship with Jesus Christ. I wanted to share this song by Mercy Me because I really think it echoes how Greg and I feel. Although I wouldn't wish this on anybody, we have truly been blessed through this trial. Our sweet little boy has shown us so much about what it means to live and the example he sets by the joy that he has everyday despite the circumstances he goes through. So here it is...

Bring the Rain by Mercy Me
I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

Holy, holy, holy
Is the Lord God Almighty

You are so much a part of our journey by your prayers and encouragement. Thank you.

Saturday, November 3, 2007

I Love Suckers!

Just wanted to give you a quick update and share some pictures. The first one I had to share because he gets so excited about eating suckers. They have a basket in the clinic and he spots them first thing when we get there. On days we have procedures and he can't eat, he will go to anyone who he thinks might give him a sucker. The second picture is one of many where I am trying to get a good one of James and his sister. I was unsuccessful in getting a good one so I included this picture because it was funny.

Update...we will see a liver doctor on Wednesday after our clinic appointment. This weekend James feels good but we are trying our best to keep him fever free because his counts are low. He has this week off from chemo and next week was slated as a week off before the next phase so he will actually have 2 weeks off chemo to get him ready for delayed intensification. Thank you for your continued prayer!