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:

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.

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.

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!

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.