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!
Thursday, August 16, 2007
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
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:
- Praise! Thank God that James has reached remission. Pray that leukemia cells never rear their ugly head again!
- James' body will readily receive these next chemo drugs with minimal side effects.
- James will return to a normal sleep pattern prior to Adrianne being born.
- 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
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
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
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
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:
- 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.
- 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.
- 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.
- James will likely have a bone marrow aspiration (BMA) at the end of the week. Pray for REMISSION!
Thursday, August 2, 2007
- James would have no fever and would be able to return home tomorrow.
- Praise! James' surgery went well and his blood levels are rebounding.
- James continues to sleep through the night tonight and that Joy and Nana get rest as well.
- James' new CVC would stay secure and functional!
Wednesday, August 1, 2007
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!