Monday, December 31, 2007
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
Friday, December 28, 2007
- 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
Tuesday, December 25, 2007
Monday, December 24, 2007
Friday, December 21, 2007
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
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
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
Tuesday, December 11, 2007
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
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.
-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!
Wednesday, December 5, 2007
Tuesday, December 4, 2007
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
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
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
Wednesday, November 28, 2007
Monday, November 26, 2007
- 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.
- Continue to pray that he gets adequate rest.
- 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 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
Monday, November 19, 2007
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
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
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
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
Wednesday, November 7, 2007
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 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
Wednesday, October 31, 2007
James at the clinic
James and his sister Adrianne
Dr Wells, James,and Lisa
Sunday, October 28, 2007
Wednesday, October 24, 2007
- Pray that James' liver enzymes will return to normal and that they will be able to pinpoint the problem.
- Pray that his counts remain stable--His neutrophils need to be 1000-1500--if they consistently are lower they will adjust his medicine.
- 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.
- Pray that James will have a better appetite. I can hardly get him to eat anything!
- 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.
- Praise-the results from his LP last week showed no evidence of leukemia in his CSF.
Monday, October 22, 2007
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
We covet your prayers-they lift us up and provide us with every ounce of strength we need.
Wednesday, October 17, 2007
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
Wednesday, October 10, 2007
Sunday, October 7, 2007
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
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
- Pray that James' liver enzymes have returned to normal.
- Pray that he continues to have minimal side effects from the chemo.
- 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.
- Pray for our upcoming transition(my mom leaves on Friday).
We love you and we are so thankful for you!
Wednesday, September 26, 2007
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
Thursday, September 20, 2007
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 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
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
Thanks again for your prayers and I will update you when we know something.
Friday, September 14, 2007
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.
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
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
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:
- Adrianne continues to have longer periods of sleep.
- We are able to better decipher James' whining (chemo related? jealous of sister? just being a 15 month old?) and have patience!
- James' blood counts continue to remain stable and he continues to positively respond to treatments.
- James gets all of his medicine each time given.
Thursday, September 6, 2007
Tuesday, September 4, 2007
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:
- James will have a safe LP at MD Anderson tomorrow (Wed) morning.
- James' blood counts will continue to remain stable (allowing for a much better quality of life for all of us)
- Praise! Adrianne has exceeded her birth weight (by a few ounces) in just over one week of life!
- All of us (especially Joy and Nana who are sacrificing much sleep) get much needed rest.
- 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
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
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:
- Praise! James' LP was successful and his blood counts have remained stable.
- Praise! Adrianne's bilirubin counts are dropping closer to the normal range.
- Praise! Joy and Adrianne are healthy and doing well after birth.
- Adrianne gets the maximum amount of exposure to the UV light through our meeting with the pediatrician tomorrow.
- James continues to maintain "normal" blood levels and has minimal side effects from the chemotherapy.
- Nana, Joy, and I are able to feel rested (even when we don't get enough).
- James will have increased tolerance to the frequent barrage of oral medications.
Tuesday, August 28, 2007
- 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
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.
Saturday, August 25, 2007
Tuesday, August 21, 2007
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
Thank you for your continued support and prayers!