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( 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!