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 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 amazing family of four is definitely a time to rejoice!
Thank you for your continued 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!

Thursday, August 16, 2007

Phase 2

Yesterday was a pretty uneventful trip to the clinic. And I have to say, I am very glad we went yesterday instead of today. The only thing they had scheduled was for his labs to be drawn and for us to see the doctor. His doctor came in to discuss the next part of James treatment. We found out that next Tuesday James will go back to the OR and have a port put in. They will take out his CVC. We are thrilled about this because it will make life easier. During his surgery, they will do his lumbar puncture and administer chemo. When he wakes up we will go back to the clinic and they will access his port and give him vincristine(another chemo). We will get to go home on Tuesday barring any complications. That is when I will start the oral chemo that is given to him every night. We are told this phase last for another 28 days and that his counts will fluctuate.

Our next visit to the clinic will be Monday to meet with the OR team and they will decide whether or not to give him a transfusion. His hemoglobin has fluctuated so they will decide then what to do before his surgery.

Please pray for his upcoming surgery that everything goes smooth and there are no complications. Also he is not sleeping like he was before he got sick. Please pray that his body will make the necessary adjustments to get him back on track. Please pray for his Nana because she is the one that gets up with him during the night. Please pray for our family-it is hard to believe in less than 2 weeks we will be adding another member. God is good--thank you for your prayers and support.

Monday, August 13, 2007


We heard that precious word today - Remission! Based on James' results from his bone marrow aspiration last Friday, pathology revealed zero blast cells in his marrow. Praise God! This is welcome news considering the continued sleepless nights that we (primarily Nana) are experiencing with James coming off the mega-doses of steroid. Despite inconsistent sleep patterns, James has been in great spirits the last few days. In fact, just yesterday, he was a giggle box. He was at the point that a funny look sent him into a giggle euphoria. We are also starting to see that his appetite is beginning to diminish (actually returning to normal). So, steroid-loaded James had the chance to win this year's hot dog eating contest. He won't have that kind of appetite again until his teen years, I am sure. We are elated with today's news and know that your intercession with the Father on James' behalf has played a huge role. We cannot fully communicate the enormity of our thanks for the many ways people have helped.

While today's news is excellent, it is truly one more battle won in a long, hard-fought war. The length of James' treatment will always be a minimum of three years no matter what gains he makes along the way. As Joy stated in the last post, we have but a short respite from chemo treatment until next Wednesday (assuming his blood counts are high enough to resume treatment). This next phase of treatment is called consolidation. It consists of weekly lumbar punctures (LPs) with a drug being injected into James' cerebral spinal fluid (CSF). The goal will be to keep any potential leukemia cells that are tempted to return from migrated to the brain. The brain is commonly a "sanctuary site" for leukemia cells. Thus, this phase of treatment keeps the brain protected. We will also be administering an oral chemo every night at home. Each of these are essentially poisons in his body with side effects that we will do our best to help him manage. We remind ourselves frequently not to think too far ahead. We trust the Lord for the journey that is today! Our current prayer requests include:
  1. Praise! Thank God that James has reached remission. Pray that leukemia cells never rear their ugly head again!
  2. James' body will readily receive these next chemo drugs with minimal side effects.
  3. James will return to a normal sleep pattern prior to Adrianne being born.
  4. James' catheter has been having issues with flushing correctly. Pray that this line will correct itself and that no complications arise from this current difficulty.

Friday, August 10, 2007

Happier Times

Well we got through last night and it was every bit of what we thought it would be. Greg took the bulk of the night getting up with James. I think he woke every 45 minutes. At 3:15 Greg came to the room and said "I don't know what else to do, he won't go to sleep." I got up and took the shift from 3:15am until my mom was up and ready at 5am. We headed to MDA around 6am. We got there and had his labs drawn and waited...... It took all of us to get through the waiting period before his procedures. Greg and I have talked about it--there is nothing worse than to see your child so unhappy and not be able to do a thing about it. There are so many times that I wish it was me that was going through this so he wouldn't have to. But despite the unhappiness, James is quite a trooper and very easily forgiving.

They took him a little early and both his procedures went great. We will know more about his bone marrow when we go back to the doctor on Wednesday. We got great news that his counts are rising. For the next week and a half, he gets a break from medicine. Yesterday was the official last day of steroids. Praise God! He is already acting like the James we know and has slept more this afternoon than he did the last 3 days. In his next round of chemo, the biggest side effect is low white blood cell, platelet, and hemoglobin counts so we will continue to be very careful so that he doesn't get an infection.

Thank you for your prayers, love, and support. We are truly grateful.

Thursday, August 9, 2007

A Rough Couple of Nights

First of all, let me begin by saying we need your prayers tonight. James goes in for blood draws starting at 7am and has his bone marrow and lumbar puncture procedures around 9:30am. As a result of that, he can't have anything to eat or drink after midnight tonight. We are very thankful we have 3 more doses of the steriods for this phase of treatment. Let me say that with each day the side effects have intensified. The last couple of nights he has had a total of about 6 hours of sleep in a 48 hour period. His Nana graciously has taken the brunt of this and let Greg and me sleep. The one thing that has soothed him in the middle of the night is his milk and cheetoes. Yes, at 3am in the morning he is up in his chair snacking on cheetoes and drinking milk. Needless to say, tonight we will have a battle on our hands.

Some prayer requests we have are
1. Pray that tonight would go as smoothly as it can.
2. Pray that the steriods don't take long to leave his system.
3. Pray for his procedures tomorrow-that they take him on time and they go well.
4. Pray for me and baby Adrianne-we have tentatively scheduled her induction for August 27th.

Once again thank you for the support you have given us through meals, finances, and most of all prayer!

Tuesday, August 7, 2007

Good News and More Challenges

Sorry it has been a couple of days since we blogged. James, Nana, and I went to the doctor on Monday as a follow up from our hospital stay so that they could check his blood levels. Although his counts had dropped a little we received some very good news. They performed a very sensitive test on James' bone marrow called minimal residue disease. It is a more sensitive and in depth test than when the pathologist reads the report. Anyway what they found was that James has no sign of acute lymphoblastic leukemia and that he is in the 95% cure rate. That is as high as they can go! We were beyond thrilled at the news. The doctor said that there is always a chance of relapse but in James's case, his chances are low. They are doing his Day 29 bone marrow in Friday and expect it to show he is in remission. Alot have ask if his treatment ends once he is in remission--it does not. James will be in treatment for the next 3 years and will not receive the label on cure until after 5 years. We have just begun this journey but God has been faithful and I know will continue to be faithful through the highs and lows.

One of the big challenges we are facing right now is a diaper rash. When we were at the hospital on Monday, a wound nurse consulted with us on some things we could do. I called the doctor twice today because none of those things were working. Please pray that James gets some relief. Because of his medication we change his diaper about 12 times a day which does not help heal a rash. Also because of the steroids he is on he is having trouble pulling up from a sitting position. We are having to go back and teach him how to do that.

We so appreciate your prayers and support thus far and humbly ask that you continue to remember us through our joys and hardships.

Sunday, August 5, 2007

Day 24 of 1095

We are thankful that James was discharged from the hospital late yesterday. Upon discharge, James was in great spirits and was showing off his basic baby sign skills to the MDA staff. We had to remind them that James is not a toy and was not put there for their amusement. Kidding! It's nice for James to get such attention, as we know many trained professional keep him on the forefront of their mind. After arriving home late yesterday, we thought James would be excited. Unfortunately, the side effects from the chemo started to rear their ugly head around the time James arrived home. He was restless all day, frequently crying and difficult to console. James was also having difficulty walking. Numbness and joint pain are potential side effects of the Vincristine that he receives intravenously one time per week. Also, after being put to bed, James awoke at 12:00, 2:00, and 5:00 am. Each time, he required a diaper change (his diaper rash is worsening since his most recent chemo) and had to be rocked to sleep. The rocking to sleep took anywhere from 20 minutes to 1 hour. We all need sleep!

On a high note, James' blood levels are continuing to creep back into the normal range, making all these side effects bearable for the time being. James will be going in at the end of this week for a BMA. We (and the doctors) fully anticipate remission. Being in remission is key to moving to the next phase of treatment (Consolidation). Despite this whirlwind of events and emotions, Joy and I are keeping good spirits and supporting one another through taking time to talk and process through this new phase of our lives. We SO much miss going to church and look forward to the day when James' blood count allows us to return. Here are our most recent prayer requests:

  1. Praise! We are nearing the end of induction (1st phase of chemotherapy of the 3 year process). James will go off of the steroid that is causing him to look like the Pillsbury Doh Boy.
  2. Praise! James' blood levels continue to rebound. Among them, the Absolute Neutrophil Count (ANC) has raised from 0 to 840 since the process started. Normal ANC is around 1500. Neutrophils kill the bacteria that enter his body. All this says is that his bone marrow is starting to do what it was intended to do.
  3. James has begun to experience more side effects, many of which are difficult to ascertain because he cannot tell us when something is hurting. You will see below that we clipped James' hair because it was falling out in bunches. Pray that we will identify how to help him best and the side effects will dissipate.
  4. James will likely have a bone marrow aspiration (BMA) at the end of the week. Pray for REMISSION!

Thursday, August 2, 2007

Dill Pickle

Many, many thanks and hugs to all that have prayed for James (and us) the past 48 hours. We have felt the peace of the Lord in these most recent struggles, and it's your love and support that helps push us through the harder times.
James' surgery to insert a new CVC (this time under his left collarbone) was a great success! The surgeon explained that James' last catheter may have been a bit short, making it easier for it to shift to the jugular vein (totally the wrong position). So, THIS time, a little bit longer catheter was inserted. We were assured that this frequently occurs with young children. James' surgery prep began with some "happy medicine" at 7:00 am. Well, this was followed with some mega-happy medicine for the surgery through post-op. So, James has been quite sleepy the vast majority of the day today. Each time he wakes, he has an appetite like an emaciated wolf that hasn't eaten in weeks. I wish that we could show you video footage of how he rips into food and eats fistfuls of ham and turkey lunch meat. We are finding that his most favorite food right now are pickles. He clutches a pickle spear in his hand and chews at it like a Slim Jim. So funny! There's a picture below. This massively increased appetite is due to the big doses of steroid. In addition to increased appetite, James' has been getting a bit chunkier and has also started to lose his great head of hair. We know his hair will come back, but it provides such a vivid picture of his illness. Anyone know of any good baby wig vendors? We will hopefully be discharged from the hospital tomorrow. Here are our most recent prayer requests:
  1. James would have no fever and would be able to return home tomorrow.
  2. Praise! James' surgery went well and his blood levels are rebounding.
  3. James continues to sleep through the night tonight and that Joy and Nana get rest as well.
  4. James' new CVC would stay secure and functional!

Wednesday, August 1, 2007

Highs and Lows-Part 2

As many of you know we brought James to the hospital yesterday and they kept him overnight for observation. A praise is that ever since we have been at MDA he has not run a fever. They are giving him IV antibiotics every 8 hours as a precaution for infection. Last night was quite a night. After initially getting through some difficulties with our room, we finally got him to settle and get some sleep. The nurse came in around 3am to start another round of his antibiotics. Not long after they started James started crying and pulling at his chest and throat. We called the nurse in and she made sure that he wasn't having an allergic reaction. We were able to rule that out and each of us got a little more rest. The doctor came in around 8:30 and checked him out and all was well.

About 10:30 his nurse came in to start his chemo. Immediately he began screaming and pulling at his chest. Again we called for the nurse and she noticed some swelling close to his line. They stopped his chemo and began to investigate the problem. They ordered a chest X-ray and the IV team was called to look at his line. They found out that his catheter had displaced and fluid was collecting under his skin. The IV team removed his catheter and they scheduled him for surgery tomorrow to put in a new line. Meanwhile they have had to continue his antibiotics so they had to put an IV in his arm. The first try was successful until they drew blood from it and then it blew. So they had to start over and put it in another part of his arm. When his blood came back they noticed that his potassium was high so that meant sticking him again to take more blood.

I promise this is not all doom and gloom. What we also learned from his blood was that his hemoglobin is beginning to recover(without a transfusion) and his platelets went from 151 on Monday to 266 today!!! Very good news. Also his white blood cell count is coming up. I agree with Greg when he talks about us being on a roller coaster of emotion. We so appreciate everyone and their prayers. They are truly getting us through this time. Please continue to pray for James that the surgery will go fine and that they will take him on time(he won't be able to have anything to eat or drink after midnight). Also pray that he won't have fever. The doctors think we will at least be here until Friday.

Again thank you for your prayers--we love you all!