Monday, December 31, 2007

We're Home

Just wanted to give you a quick update and let you know we are home. Thank goodness they let us go and we have a followup with the doctor on Wednesday. James' platelet count and white blood cell count are extremely low so we will have to watch him carefully. His hemoglobin did come up after 3 transfusions. I am happy to say that we will finish the last chemo of this phase tomorrow night and then James will have a couple of weeks to recover before entering maintenance.

Please pray that James stay fever free-His ANC is 100 so his ability to fight infection is low. Also pray for his routine-he is out of sorts with disrupted sleep patterns, little appetite, and feeling bad. Pray that he will return to the fun loving boy we know.

We are excited about 2008 and the future it holds for our family. 2007 will be a year we will never forget!

Happy New Year!

Saturday, December 29, 2007

The latest from MDA

There is not too much more information that I can give today. First, thanks for your prayers. James has been fever free since he has been at the hospital, though his cough persists and seems to have even worsened. He is on a broad spectrum antibiotic intravenously at regular intervals. He does not currently show any signs of pneumonia. Praise God for that! Because of those good signs, he is able to continue with the delayed intensification as planned and receive his last dose of the really strong chemo medicine today. His blood counts have continued to decline across the board and it is likely that this dose will prolong the rebounding of those. This is an expected reaction, but they will do another transfusion today to try and counteract the decline as much as possible. He will continue on oral chemo until January 2. They cannot say when he will get to come home from the hospital for sure, but they suspect that will not happen until late Sunday or even Monday. His counts have to recover a bit first, and then they can decide whether to release him. Thank you for joining us in prayer that his fever will be kept at bay as well as any infection that would be a symptom of. (like pneumonia or whatever else) We will also be praying for a speedy rebound in his blood counts. As always, we will keep you posted on any changes.

Friday, December 28, 2007

Asking for Prayer

I don't have very specific details at this point, but would like to start any readers praying and will promise to update you as I get information. James, Joy and Greg headed in to MDA last night around 7:30 after days of dealing with a runny nose and cough culminated in a fever that was deemed too high for him to battle out at home. They were admitted for a stay (the length of which is to be determined) and were informed after blood tests that James' counts are down and he would be receiving a transfusion.
Please pray for:
  • his counts to rebound in response to the transfusion
  • the infection to respond to the prescribed course of treatment
  • the hospital stay to go as smoothly as possible
  • peace of mind
We have been made to understand that a hospital stay is almost inevitable at this point in the treatment plan, but that doesn't seem to make it one bit easier. Being hooked up to an IV on rollers is not easy for a toddler. And of course, there is the interruption of normal sleep patterns and just plain being messed with all the time. Those are just the surface concerns. Worrying about infection and blood counts are the biggies. Thank you so much for your prayers as we know God will hear and respond.

Tuesday, December 25, 2007

Merry Christmas!





James came up with a little joke for the holidays...
What's missing in ch_ _ ch?(answer found above)

Merry Christmas! Hope your day is filled with love!
Greg, Joy, James, and Adrianne

Monday, December 24, 2007

Christmas Eve Eve

I wanted to share some pictures from our time with family on Sunday. It was great spending time with family and James enjoyed seeing all his cousins. We should theme this year Christmas as "The Elmo Christmas".

James opening his Elmo Medical kit with his cousin Allie.


James with his new Elmo.

Adrianne with her cool new shades.


Exhausted from a long day...




Friday, December 21, 2007

The NPO Monster

Our day at MDA began with a BANG. When I say "BANG," I mean the NPO Monster reared its ugly head at 3:00 a.m. on Wednesday morning. In case you are wondering, NPO means "nothing by mouth." James was to have no food or drink since 8:00 p.m. (when he went to bed) the night before. He can have a measly 2 oz. of clear liquid 3-4 hours before a procedure. Not really enough to quench one's thirst. Anyway, the NPO Monster was in such form that around 5:15 a.m., I asked Joy, "Do you think it's too early to head to hospital."

We promptly arrived at 7:00 a.m. to get James accessed and to get blood drawn to see if his counts were sufficient for the Lumbar Puncture (LP). Unfortunately, James' port decided to close the door and not one drop of blood would come, and we were informed that anesthesia needed to have their monthly consult with us. Remember...NPO Monster. As we were deliberating what to do regarding James' port, we went to anesthesia with our precious NPO Monster. James cried, wailed, and screamed. Just to expedite the process, I walked around with him for all staffers to enjoy the surround sound quality of a NPO Monster. The Physician Assistant that was processing us said, "You just want me to go ahead and sign off on this?" "YES!" Ultimately, James had to be stuck in the arm for a blood draw. This involved three adults restraining him while another attempted to access his tiny little veins. While this was painful for James (and more for parents), the Pedi-staff at MDA is amazing and were able to access him quickly. His blood counts were great, which allowed us to move ahead with his LP. More importantly, Dr. Wells noted that James counts would likely sustain long enough for us to spend Christmas with family. Praise God! James recovered wonderfully from the LP and were were admitted to the floor for our overnight stay. Thus, the NPO Monster was soothed with food and drink just three hours later than expected and our James returned in all of his glory.

After being admitted to the floor, I had to see clients in the early evening time and James was back to his smiley, laughing self. He watched an Elmo Movie (early Christmas from Nana) approximately 376 times. He seemed to have a pretty good appetite and had so much joy well into the evening. As we started to wind down for the evening, James cried for about 45 minutes, resulting in our current trend of him sleeping on Mommy or Daddy's chest. He was congested, which led to him sleeping on Dad's chest while Dad leaned back at a 45 degree angle. James got some good sleep...Dad didn't. IT WAS WORTH IT! Our smiley James was back in action on Thursday. We watched Elmo another 284 times, got to see some children play instruments and sing Christmas songs, participate in a party on the Pediatric floor (Pedi-dome), and have James enjoy in some free play in the Child-Life room - all the while tethered to an IV. James was given his last dose of IV Chemo around 2:15 p.m. on Thursday and we arrived home around 5:00 p.m. Thursday night. Whew! James is so amazing. He underwent a LP, had two IV chemos, one oral chemo, one IV antibiotic, a needle stick in his arm, and a partridge in a pear tree. What a warrior.

Friday arrived and James has maintained his smiley self. It had been some time since we had seen a glimmer of the real James - God's timing is always perfect. We have received many blessings today from friends and family alike. Our hearts are full of gratitude. Thank you for being so faithful with prayer, words of encouragement, and love.

Tuesday, December 18, 2007

Big Day Tomorrow

First of all, thank you for your prayers. Tonight I got James ready for bed and took him up--and he laid down with no protest! I know you have been praying and I wanted to let you know God answered! Pray that he will continue to sleep through the night because we have a long day tomorrow.

Please pray that his counts are high enough to start part 2.
Pray for protection for his kidneys and bladder-the chemo he takes tomorrow is toxic to them.
Pray that we will get back into a good sleep routine.
Pray that side effects are minimal.
Pray for Adrianne and Nana that they get a good nights rest while we are in the hospital.

Thank you so much for your faithfulness in praying for us and loving us.

Monday, December 17, 2007

Still no Sleep

It is a complete mystery to us but we have a child who won't sleep. He cried most of the night even after we gave him some Benadryl. He is refusing to take a nap which adds to how tired he is. Greg and I are running on fumes because if he isn't crying Adrianne is. We were talking last night that we got more sleep when he was on steroids! I really need you to pray...

Pray that whatever is hindering him from sleep will be resolved
Pray that his congestion will clear up
Pray for this Wednesday when he starts the second part of Delayed Intensification
Pray that Adrianne gets back into a pattern of sleep

On a happy note-we are starting to see the old James back-his smiles and fun personality. That has been a blessing

Thanks so much for your prayers

Wednesday, December 12, 2007

Back from the Clinic




As we suspected, they wanted to come in today and take a look at James because of the kind of night we had. So we packed him up and headed to MDA. They wanted to check his counts and examine him. His blood looked good-dropped a little from Monday but they attribute that to the virus he has. He has had an infinitely better day today-Pray for the night! I wanted to include some pictures that I took recently. Thanks for your continued prayers and support.

Please pray

It is in the middle of the night, Greg and I both up and James has been crying now for 55 minutes. I am waiting for MD Anderson to call me back. We are at a loss for what is going on with him. He had a hard day yesterday-he woke at 5:30am and went to bed at 8:30 pm with no nap and cried a lot. We need your prayers-we feel helpless to know what to do. Thank you.

Tuesday, December 11, 2007

On hold

Tomorrow was suppose to be a big day. We were to start part 2 of Delayed Intensification but we're on hold...

Yesterday we had to make a trip to the clinic because James was running a low grade fever and had developed a runny nose and an awful cough. I went fully expecting his blood to be bottomed out due to fighting whatever was going on with him. We found out just the opposite-turns out James' blood has recovered nicely. His hemoglobin went up, platelets up, and he had an ANC of 2100. The doctor, however, did not want to start the next part with James running a low grade fever. So we will wait until next week to start part 2.

This is what the next couple of weeks will look like:

Dec 19th-he will have an LP with chemo, be admitted to the hospital to receive fluids followed by 2 chemos, plus an oral chemo
Dec 20th-chemo through his IV, we will go home, and an oral chemo
Dec 21st-chemo through a shot at home and an oral chemo
Dec 22nd-chemo through a shot at home and an oral chemo
Dec 23rd-Dec 25th-oral chemo
Dec 26th-chemo through a shot at home and an oral chemo
Dec 27th-chemo through a shot at home and an oral chemo
Dec 28th-doctors visit, chemo through his IV, and an oral chemo
Dec 29th- chemo through a shot at home and an oral chemo
Dec 30th-Jan 1st-oral chemo

Please pray about the next part of treatment. These chemos will drop his counts and make him feel terrible. Also continue to pray for his bottom to heal and that the congestion will go away. He has had a very hard day today-cried a lot and refusing to sleep so we could really use your prayers!

Sunday, December 9, 2007

A Rough Couple of Days

Well since the last post we had another trip to the hospital. James was is a lot of pain so we went back to the clinic for them to check his diaper rash. They took his blood and it revealed an elevated white count. One of the doctor(not James' regular doctor) introduced the idea of leukemia being back. Of course it was like a train hit us. They would have to see the differential in his blood before they could determine what was going on. James' doctor, Dr Wells, came in and wasn't alarmed at all by the white count and wanted James to get some more fluids and then we could go home. Because it was later in the afternoon, we had to finish the fluids on the inpatient floor. By this point James couldn't be consoled and when the doctors on the floor saw him they ordered morphine immediately. His differential came back on his blood and the attending doctor looked at it and determined it was his body rebounding from all that had been done to it. We were relieved! After the morphine was finished we got to go home--this was Thursday afternoon and evening.

Since we have been home James diaper rash has gotten better every day. He actually enjoyed his bath last night. The pain doesn't seem to be as intense except when he poops. Although the diaper rash is healing he has developed congestion and a horrible cough. For the last couple of days he has walked around crying. I called the hospital and they want us to monitor him and if he gets a fever to call. So needless to say we don't have the old James back yet.

Please pray:
-that James would be fever free and that he would feel better
-that the congestion he has doesn't go into his chest
-that his blood and body would continue to rebound so that we can start part 2 of Delayed Intensification
-that his diaper rash would heal soon!

Thank you.

Wednesday, December 5, 2007

Back at Home

I am glad to say we are back at home. James was discharge at 5:30 last night and was given all his meds so that we would not have to return today for our normal appointment. I am very excited to report as of 5:30am he took his last dose of steroids. He had a good night last night-he didn't wake until 5:15 this morning. He is still in a lot of pain from his bottom-he arches his back when I put him in his highchair because he doesn't want to sit down completely. They gave me some Tylenol with codeine to help manage his pain until his bottom heals. Please pray that it is a quick process and that the steroids would get out of his system fast. We are now in a holding pattern until next Wednesday to see if his counts are good enough to start part 2 of Delayed Intensification. Nana will be here on Friday to offer support and help us out. Thank you for your continued prayer and support.

Tuesday, December 4, 2007

Another Trip to the Hospital....

Indeed, this delayed intensification has been true to it's name~ INTENSE. Thank the Lord that this first half of it is almost over. James, Joy and Greg could certainly use some intense praying today and for the next few days. Truly, they are all exhausted. Physically and otherwise. Only two more doses of the steroid, and they are done with it for now. Tonight and tomorrow morning. Poor James has not been himself since, well, about 20 days ago. Day by day as the cumulative effects of the steroid and chemo drugs have bombarded his little body, we have watched him become more subdued and clingy, yet restless. It has been heart wrenching like you can hardly begin to imagine.

Yesterday morning, Greg had to take the day off of work just for their little family to make it through the day. After a weekend without much sleep for anyone, it was necessary for them to work as a team. Well, mid-day it was determined that they should make a trip down to the clinic to get some IV fluids, check his chemically burned bottom and do another blood culture to rule out any masked infection(fyi...so far so good on that). So, off they went. Once there, it was decided that they should stay the night and at least into the next day for observation. His ANC has continued to decline, but all other blood counts are good for now. As you pray for them today and in the coming days, please remember these things:

  • He is, as far as they can tell, in terrible pain right now (he cried/screamed inconsolably from 4am to 8am this morning), pray that the meds they are now giving him will give him comfort.
  • They are all more tired than i can tell you, pray for true rest.
  • Pray that the strong drugs that are effecting him so adversely right now would also keep doing their job against the cancer and that their side effects would quickly disappear when this half of delayed intensification ends tomorrow morning.
  • Make no mistake, the road ahead is still long and grueling, but some reprieve is coming. However, with his ANC down, he is so very prone to infection and unable to fight it, so pray against that. NO Fevers.

Again, thank you for your prayers and everything else you have done to bless them and help get them through this.

Saturday, December 1, 2007

A Trip to the Hospital

That's right-we dropped Adrianne off with her Aunt Steph around 5:30 or 6pm Friday night and headed to MDA. James was exhausted before we ever left the Woodlands so needless to say the trip wasn't very fun. We got down there and had to wait a little while. They accessed his port and drew blood. We went because of his bottom and also a spot that had shown up on his forehead that could be indicating to us that his platelets are low. Anyway his blood work came back OK-his platelets had dropped a little, his hemoglobin good, and his ANC was 850. Also the doctor looked at this bottom and it wasn't infected-Praise God! He told us to keep doing what we are doing and he prescribed another cream that might help. I am waiting for the pharmacy to open to see if they compound it. We have got to get to Wed morning-the last does of steroids!

When we got home our night wasn't so good. James was up most of the night just wanting to be held. Pray that we have the strength to get through the next few days. Pray for Greg-he is an amazing dad and always wants to be here to help me but knows he has to work. I think he is doing an awesome job balancing both but pray that he feel that way. We love you all!

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!

Wednesday, October 31, 2007

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!

Sunday, October 28, 2007

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!

Wednesday, October 24, 2007

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.

Monday, October 22, 2007

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:)

Friday, October 19, 2007

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.

Wednesday, October 17, 2007

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!

Sunday, October 14, 2007

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!

Wednesday, October 10, 2007

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.



Sunday, October 7, 2007

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.

Thursday, October 4, 2007

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!

Monday, October 1, 2007

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!



Wednesday, September 26, 2007

Record Time

Today James went to the clinic and had a great visit. We arrived at 8:15 and we left there with chemo in hand at 10:00. That is down as the fastest clinic visit ever. His counts were good. They are monitoring his liver enzymes because last week they were elevated and this week they had doubled from that. They are taking him off the Bactrim(antibiotic) until next week when we go back. Please pray that his enzymes will return to a level that they are comfortable with so that he can resume Bactrim. Its important for him to be on Bactrim because it best protects him from a pneumonia that immune-suppressed people get.

He was a "ham" again today. Everybody is so impressed with what a big boy he is. In fact when you ask him how big he is he throws up his hands in the air and we say "so big" (thanks for teaching him that Aunt Julie). After taking a ton of pictures I got some with him showing how big he is. He had gained some weight which was also good.




James has become quite a "reader" and I wanted to share some picures of him "reading".

We are now looking forward to his cousin Taylor, his Aunt Mary Beth, and his uncle Drew coming for a visit at the end of the week. Thank you for your prayers. We love you all!

Monday, September 24, 2007

Brother and Sister



Well we had a pretty good weekend. I am glad to say that the steroid burst is over. James had to be on steroids for 5 days starting last Wednesday. His body immediately picked up on it so we had to deal with the side effects again. We ended the steroids last night so hopefully we will have our sweet boy back soon. As I tried to write this, he was screaming in his room and Adrianne was screaming in the swing and my mom had gone to the grocery store. Oh well, that's how it goes with a one month old and a steroid raged 16 month old. I wanted to include a picure today. Adrianne went for her 4 week appointment and everything looked great. She has gained weight, she is up to 10 pounds and 2 ounces. James goes back to the clinic for chemo and a doctors visit on Wednesday. Please pray that the side effects would be minimal. it is so hard to know if he is hurting or not. Pray that he would continue to get in a normal sleep pattern and that Adrianne would follow. Also pray for my sister, brother in law, and niece as they travel--they are coming for a visit at the end of the week and we are very excited to see them and James is excited to play with his cousin.
Thanks again for you prayers and support. I also want to publicly thank Sandy Smith for organizing everything. She is such a blessing to our family and we are very grateful to her!

Thursday, September 20, 2007

Normal boy things

It is nice to have a day when you kinda "forget" you child has cancer. Today was one of those days. I told my mom this morning that I wanted to get out of the house so we decided to go to the mall. i am sure many can relate to this day. I am still very unsure of myself when it comes to getting 2 kids out and about for errands. I told my mom at 8:30 that I wanted to leave by 10:30. Day was going along great-James was taking a nap, Adrianne had eaten and then was napping, my mom was getting ready and I had the opportunity to do some laundry and then get in the shower. As we were gearing up to leave Adrianne woke up hungry so I began feeding her. I thought she was done when she fell back asleep but she decided she wasn't. So a few more minutes went by my mom was in the bathroom, I was feeding Adrianne and James had disappeared. I can hear Emma's cage rattling(we had already put Emma up). When I go into check I was thinking James was letting her out. At first glance I didn't see him. When I flip on the light-there he was. James had somehow managed to get his entire self into the cage with the dog!(Emma is an eight pound weiner dog and her cage is very small) Unfortunately I panicked to get him out--would have been nice to include a picture! All is well--I got him out OK. The dog had the most puzzled look on her face. We laughed all the way to the mall.

Its days like today that I smile for James doing the normal boy things. In fact as I sit here to write this entry, he is tearing the Pottery barn catalog to shreds and I caught him trying to eat the paper.

Hope this makes you smile and give you a glimpse of our "normal" day. Thanks for continued prayer.

Wednesday, September 19, 2007

We have so much to be thankful for...

First of all I want to say--thanks for praying. On our way back from the clinic, Adrianne's nurse called and let us know that all tests were normal!!! God is so good.

We had a great visit at the clinic. James counts were very good which enabled him to get his vincristine. He was quite the talker today and walking around the clinic as if he owned it. He didn't cry when his doctor examined him-which usually is a fight. He waved hello to all the doctors and nurses that came by. He had lots to say about today just no one was able to understand it!

Being in the clinic today makes me thankful of our circumstances. James has responded so well and the cancer he has is so treatable. It breaks my heart to see other kids who are not doing as good. One thing this journey has taught me is that no matter how bad we think our circumstances-we have it easy compared to some. I thank God that He has carried James thus far through his treatment, that he has had minimal side effects, and that he hasn't lost that sweet sense of humor. God is faithful even when we feel our world is crashing in on us and we wonder how we will get through the next day not to mention the next three years.

So thank you for being faithful prayer warriors on our behalf!

Tuesday, September 18, 2007

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.

Saturday, September 15, 2007

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.

Friday, September 14, 2007

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.

Thursday, September 13, 2007

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!

Sunday, September 9, 2007

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.

Thursday, September 6, 2007

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.

Tuesday, September 4, 2007

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!

Friday, August 31, 2007

Daily Challenges

We are somewhat in a routine with James and his treatment right now. He consistently does a wonderful job of taking (with some strong-handed coercion) his nightly chemotherapy, but he doesn't do so great taking the protective antibiotic two-times per day, three days per week. We continue to attempt any potential trick, but we have found that the most effective means is to take it head on and continue to attempt to convince him that all this unwanted treatment is helpful. We press on! James has been a riot recently. He's a chatterbox and often attempts to have dialogue with whomever will listen. Now, it's his own special language, but he is absolutely fluent! James has responded well post-LP. He has maintained good sleep patterns, has not been overly fussy, and has appeared happy most of the time. Thank you for your prayer in this area.

We are so blessed that Adrianne is in the clear from jaundice. Her doctor released her from the UV light yesterday. Yeah! Joy and Nana have received little sleep because of Adrianne's erratic sleep patterns. They have been tag-teaming with Adrianne so that I am able to be fresh for work. I am blessed - that's for sure. Please pray that Adrianne sleeps for good pockets of time so that everyone can get much needed rest. We are certainly reminded each day of challenges we face, and it often seems that new challenges pop up every day. Yet, our faith has continued to grow and our dependence on God is ever apparent each day. Thank you for being God's instrument by sharing His love through your words and actions. We'll keep you updated. Again, it's so nice to have ordinary things to talk about.

Wednesday, August 29, 2007

From Jaundice to Spinal Taps

Thank you for your consistent prayer! We continue to feel held in the arms of many friends and family. First, we are so blessed to have family available to assist in any way need. My mom was able to drive with me for James' appointment at MDA today while Joy's mom was able to stay at home with Joy to assist in the phototherapy for Adrianne's jaundice. Moms are so great! James had a lumbar puncture (LP) today to have chemotherapy injected into his cerebral spinal fluid (CSF). This will continue throughout treatment, and at this phase, it will occur one time per week. James also had his port (small rubber ring embedded in his chest connected to a catheter) accessed for the first time today. While he put up a small fight, the process went really well and his port was successfully accessed! This will hopefully improve with each access in the future. The MDA staff is amazing. Each of the six people that we have a relationship with asked about baby Adrianne, Joy, and wanted to see pictures. We are lucky to have such caring professionals that take a personal interest in our lives.

James responded beautifully to the LP. He is given anesthesia (Propofol) for this procedure. He falls asleep quickly and wakes with little to no agitation. After going to the pharmacy, we were able to leave MDA in record time around 12:30 p.m. (which made it a 6-hour day instead of an 8-hour day!). Adrianne's day was full of the "tanning bed." She already has little tan lines around her diaper. Kidding! You ought to see the device she has to lay in. It's the size of a large suitcase and sits propped open with UV lights beaming down on Adrianne. Adrianne is also wrapped in a UV blanket to give her extra assistance to break down the excess bilirubin. Praise God, her bilirubin counts decreased with the latest blood draw (just three hours ago). We will continue the all-night UV vigil (thank you Nana) to get those counts where they are supposed to be.

We are daily reminded that God is watching over us, helping us through hard times, and sharing his love through you. Current prayer requests include:
  1. Praise! James' LP was successful and his blood counts have remained stable.
  2. Praise! Adrianne's bilirubin counts are dropping closer to the normal range.
  3. Praise! Joy and Adrianne are healthy and doing well after birth.
  4. Adrianne gets the maximum amount of exposure to the UV light through our meeting with the pediatrician tomorrow.
  5. James continues to maintain "normal" blood levels and has minimal side effects from the chemotherapy.
  6. Nana, Joy, and I are able to feel rested (even when we don't get enough).
  7. James will have increased tolerance to the frequent barrage of oral medications.

Tuesday, August 28, 2007

Say a Special Prayer

Just an update on some things to pray for tonight and tomorrow:

  • Adrianne does have jaundice and has to be on her own under the lights of a little "tanning bed" as much as possible between now and her blood work appointment tomorrow afternoon. Pray for that to go as well as possible, considering she would like to be held most of the time being only three days old. Pray for her bilirubin to be in the normal range as soon as possible.
  • Continue to pray for the nursing situation to improve. Adrianne needs to begin regaining her weight and to stay hydrated. These things take time and lots of prayer.
  • Pray for James as he goes to the clinic at MDA tomorrow for a visit after having begun the consolidation phase of treatment.
  • Pray for REST for Joy, Greg and Nana.

Sunday, August 26, 2007

Sweet Baby Girl

As promised, we would like to share some photos.
Here she is in her big pink bow ready to leave the hospital.


In these two photos, Adrianne is only moments old,
but bright eyed and smiling!


And here are a few from Big Brother's visit. Mamas, remember how much you miss your babies when you go away to have another? It's a sweet reunion even after just one night.

This is the hand knitted cap she wore when James came to visit. For whatever reason, he had taken to holding it in his hand before he left the hospital to go home. They let him take it with him, and the most precious thing.....he carried it around as he played at home on Sunday.


And here are a couple of pics of her first evening at home, which by the way, was Sunday night. I think this little family has had enough time in a hospital room and with James needing his chemo, it just made sense for them to be released. Adrianne's bilirubin numbers were right on the edge of keeping them there another night, but all things considered the dr. let them leave.
They will need to go in on Tuesday to check on that. Please pray that she does not develop any further jaundice. Maybe a little old fashioned sunlight through the windows combined with our prayers will do the trick. I just think it would be simpler if those numbers were perfectly acceptable on Tuesday. Also pray for Adrianne to be a fast learner when it comes to nursing and all that entails, as well as sleeping for a few hours at a time on her own...giving mom and dad some much needed rest.
In case you wondered, Greg is able to be off for a few days and James' next clinic visit at MDA is on Wednesday.


Saturday, August 25, 2007

A Time to be Born...

In Ecclesiastes 3 the Bible teaches us there is a time for everything. Though Joy was scheduled to be induced on Monday, God (and precious baby Adrianne) had another time in mind entirely. Joy began laboring, I believe, at least the early stages in the wee hours of the morning on Saturday. By the time everyone was up and moving, she was making calls to the professionals to find out if she was indeed in labor. With James she was a week late and had to be induced, so the onset of labor was not familiar territory for Joy. It was decided they should head in to the hospital to be sure. In true whirlwind fashion, things were put in place, Nana hopped off her morning treadmill workout and they were out the door. At the hospital, they were initially told to go walk a while and come back to see if there was any more progress. After about an hour, the walking had done the trick and Joy was admitted. As a huge answer to prayer, the natural onset of labor was much easier on Joy than the induction had been a little over a year ago with James' birth. Dr. Strong came in on his day off, as well as delivery nurse, soon to be neighbor, and friend Linda Novak. The two of them, together with Greg, Nana and most especially Joy worked together to make Adrianne's birthday happen. Everything went as smoothly and as "uneventfully" as we all had hoped and prayed for.
Adrianne Grace Ryan was born at 6:23 pm, Saturday, August 25, 2007.
She weighed 8 lbs. and 3 ozs.
She measured 21 inches.
She has quite a bit of dirty blonde hair, blue eyes, and
according to Greg, looks a lot like James did on his birthday.
She has already nursed very well, taken to her paci, and is sleeping very peacefully. What an angel! Granny and Grandad brought James for a visit. He was not too sure what to make of her. One thing he was sure of was that he wanted to have her paci. (the little one resembles his own) Joy, Greg, and Adrianne will most likely be at the hospital until Monday.
Proud husband and daddy Greg told me of how awesome Joy has done today with the birth of their daughter and with getting acquainted with Adrianne and falling comfortably into her new role as mommy to their brand new baby girl. I feel certain Joy would have had similar words of praise for Greg as her support during labor and as tender daddy to Adrianne.
They are an amazing team....an amazing family of four now...it is definitely a time to rejoice!
Thank you for your continued prayers....pictures will be posted as soon as we get the chance!

Tuesday, August 21, 2007

Consolidation Begins!

We had an 8-hour day at MD Anderson (the second in a row for Joy and Nana) so that James could receive chemo and also undergo surgery for a port-a-cath. I was happy to find that a port is merely a small, dense rubber disk that is embedded under the skin in the chest area that is connected to a catheter that runs to his heart. The skin grows over the incision where the port was placed, allowing James to return to normal activities like bathing without having to worry about infection from having a wet bandage. This is great for all of us! Interesting tidbit...the anesthesiologist working with James noted that his wife was due this Monday, 8/27, with their first child and that he wanted to personally carry James back to the operating room "to get practice." What is the likelihood that we would be paired with a physician whose baby's due date coincided with Adrianne's? Even more important was the special interest this doctor took in James. Amazing. On a humorous note, this same doctor told us that this was the year of the golden pig on the Chinese calendar. Children born on this year are said to be specially blessed because the golden pig only comes every 200 years. Wow, a golden pig. That must be the most delicious bacon.

This was a difficult day considering that James was not able to eat for over 12 hours until after surgery was completed. We were all fortunate that he was able to sleep through the one-and-a-half hour wait in pre-op and awoke without agitation after surgery. It's amazing to think that just over a month-and-a-half ago, our lives were "normal." Our faith has grown as God has revealed Himself in both subtle and also huge ways along this journey, and as a result, our family bond has strengthened with each challenge we face.

We are essentially in a holding pattern - awaiting Adrianne's arrival. We are excited about the opportunity to love, nurture, and guide another child, but we also realize that the challenges will compound in the near future. We regularly learn the lessons of humility and true Christian community by the meals and assistance provided each week. Thank you for your ongoing commitment to see us through this challenge and, most importantly, to continue to hold us in prayer. We look forward to posting about ordinary days with ordinary issues. For instance, James has now honed the fine art of tantrumming when told "no." He flails his arms about and makes this high-pitched squeal almost inaudible to humans. It's actually kind of nice to see some normal kid things in this not so normal time. Now, I probably won't be saying that a few months from now.

Sunday, August 19, 2007

Change of Plans

On an earlier post, I said that James would be having surgery on Thursday the 23rd. They called us on Friday and rescheduled his surgery for Tuesday the 21st. The schedule is for us to go in and have labs done, then he will get vincristine, followed by a port placement and a lumbar puncture with chemo. Please pray for us--Tuesday will be a very long day for him and he will receive lots of chemo. He also won't be able to eat on Tuesday before his procedure.

Thank you for your continued support and prayers!