Greetings from San Juan, Puerto Rico

My trip to San Juan has been very good. For those of you who think that college professors don't work hard...well I guess this trip would only deepen your conviction on that point; however, I rarely travel for professional development purposes, and this looked like a good one to do. At anyrate, most of the last two days have been spent working, and now I am relaxing, posting a few yards from the beach, sitting next to the pool and enjoying a Caribbean sunset (wirelessly connected, of course!). How many of you knew that P.R. was a US territory (or better, what that actually means?)?

Back to the homefront, it sounds like Paul has had a great day. He did need platelets in the clinic, but besides that he and Leigh were off to radiation where he performed like an adult. He's got this radiation thing down (which is sad, but extremely helpful).

It does appear that Paul will receive a more toxic combination of chemo drugs this week. For you NB-parent trollers out there, I'll get technical for a bit since I know you are curious. Paul will be getting Velcade + Doxorubicin (given its empirically proven apoptotic synergistic effect on NB). He will stay on the Nifurtimox (4 pills/day) + Artemisinin/Artemether (1 of each/night). I'm not sure if he'll start oral cytox this week or at all, but he'll continue with rads and Zometa. IV-Vit. C is off the list (Sholler suggestion). Our FW doc basically told us that she expects Paul to need mucha grande platelets (I'm practicing my Spanish here in P.R.), and he'll be admitted right away for neutropenia/fever (as usual), but we should expect a longer bone marrow recovery with what we are about to do. So, there you go.

Please pray that these drugs will get Paul's NB back under control without major hospitalization complications. It will be a challenge for him. God is bigger than all these things; let's not forget that fact. Our faith and trust is still in Him.

Jeff Gordon Week

After today's record breaking weekend win at 'Dega, we Saxons have declared this "Jeff Gordon Week." Show your love by enjoying the number 24 in all its glory. If you are clueless as to what I am talking about go to nascar.com and get yourself some good ol' Southern book learnin.'

P.S. Paul is doing great today. (-:

Breakfast in bed

The guys have a new tradition where they get up around 7:30am on Saturday and "fix" breakfast for Leigh and I in bed. They have prepared peanut-butter on toast the last few weeks along with milk and OJ. They are quite proud of themselves, and I must say that it's pretty nice to be able to lay in bed with your breakfast and watch SpongeBob. Now, if I can just teach one of them to drive to Starbucks that would be even better.

We have done lots of fun things on our sunny weekend so far. They requested Putt-Putt so we did that, and then they all wanted to go to Wal-Mart and select a toy with their own money. Tonight we're going to cook out and watch a movie. Paul is feeling good today and not showing signs of any pain. We'll plan a regular day of church fun tomorrow. Monday Paul will start some kind of chemo, and we'll continue with radiation. It will be a busy week. We know you're praying.

Radiation and discussions

Today was one of those LONG ones. Paul and I were in FW at the clinic before 9:30am, and then we had a meeting with the radiation doc. This is the first time I have worked with this particular doctor, and I was very impressed with her willingness to work with Paul and especially her working us in today to actually get some radiation treatments to the soft tissue areas that have come up. Paul was a little nervous about wearing the mask again, but during the treatments he did fine. We are mainly doing these radiation treatments in order to help alleviate any pain that may come and simply to get rid of the bumps. Today's was the first of 12 or so treatments.

I think what contributed to today's longness is that after talking a lot this week with our doctors (both VT and in FW) and after having lengthy conversations with them all again today at some point, I feel only slightly closer to a plan for next week's treatment (besides radiation). I don't think we have the luxury of a week to sit around thinking about what to do. All involved care a great deal for what is best for Paul, but the opinions are pretty different about what should be done. I am doing my research, keeping all lines of communication open with all involved, and I feel like we are almost there. We'll some prayers for decision making and for Paul's healing...the usual. (-;

De-grumped

Paul was smiling when he came walking into the kitchen this morning. He apparently got up on his own (last), descended the bunk ladder, undressed/dressed himself and then actually ate breakfast (English muffin with peanut-butter, AKA: "Leigh's muffin"). I had managed to find him a new NASCAR for his collection which also brought many smiles. He's still in "post-hospital-I-need-everything,-and-I-need-it-now" mode, but I think that will wear off soon.

Paul has a radiation consult tomorrow as we consider hitting these areas on his head/face that are showing up. Also, we are thinking about what drugs to use. We are trying to predict that balance between Quality-of-life with level of aggressiveness of treatment. Less hospital time combined with maximum tumor kill is always the goal.

Anyhow, right now, today, he is feeling good, and we are all together. Pray for our decisions and for Paul.

Grumpy boy

UPDATE (4pm): Paul is getting discharged late this afternoon. The full CT didn't show anything new so that's nice to know. And, our doc looked at the head CT, and he said that what he saw wasn't as bad as how the radiology report read. I'll take that! (-:

Paul is very grumpy today. I think it's a combination of my letting him stay up late watching movies and him being tired of being there. He feels fine, and wants to get out. There is a good chance that he'll get discharged today since he is no longer sick; but, our doc there thought we could get in more "things" by staying a bit longer. For example, he has already done a full body CT today, and I think there is a bone scan later today. These are both things that would be more of a hassle if he were not inpatient, and we need them to see if there is more to this stuff than that in his head. Also, there was a chance that we might be able to consult with a radiation doc sometime today. Anyhow, we have accepted the news of yesterday and are moving on to discussions about our options. We are thankful to have two incredible docs (one in VT and one in FW) that really care about Paul, and they are putting together some kind of game plan. Thanks for your uplifting words of encouragement and prayers. Each day is special and something to be treasured isn't it? (-:

CT gave us news but not the good kind...

Paul's CT shows a few new soft tissue areas. The bump on his forehead is NB as are one or two other areas on his scalp. At least one or two of these are so small that I can't see them. We are talking about our options and haven't lost courage. It helps that Paul is feeling well and is back to himself. Whatever got us admitted...fever...is now gone, and he never had a culture go positive. I guess it was a blessing that we got admitted when we did so that we got this CT information so soon before things took off. We may consult with a radiation doc and get a full CT tomorrow to make sure there is not more someplace, but hopefully Paul will be discharged tomorrow or Thursday. It's so much easier doing all this stuff inpatient. At anyrate, it's not the news we wanted, but we have had it given to us before. Faith and hope are all the more important in these kinds of circumstances. We know you are praying for Paul and our decisions.

Back

OK. After yesterday's downer post, I am back in the right mindset. It helps that P's culture from yesterday hasn't grown anything yet and that he has not had any fever since yesterday. Plus, he has been back to his good ol' money finding, card-game winning self all day.

The area of "fullness" on his forehead continues to be a concern. It could be sinus swelling, some weird reaction or, of course, some new NB. We decided today to get a head CT as soon as we can to stop our guessing. We'll take a look at doing some radiation to that area as well as a review of the various drugs we had in mind if it's new disease. And, we'll do this in consultation with our VT team too; the Cook folks are happy to work with all of us to do some more good with Paul.

So, somehow the equilibrium in my hope has been restored. Thanks for lifting us up in prayer these days. (-;

The Good, The Bad, The Ugly

The Good: We had a wonderful first part to the weekend. We spent it having fun with family and friends. Paul felt pretty well, but after we got home on Thursday, he started getting a cold and flirting with a fever. Oh...also in the good category...we had fun watching Jeff Gordon win number 76! Sweet.

The Bad: Paul's fever came on, and combined with low counts we drove up to FW this afternoon to get him checked out. Paul's counts are still low and his cold was getting worse as was some ear pain. Anyhow, here I sit next to him in gool ol' room 2 on the 3rd floor at Cook. Paul is watching TV and getting more antibiotics run into his body. He also has a small area of swelling between his eyes on the bridge of his nose that I think is suspicious. Paul has had some odd swelling from time to time around his eyes/head that turned out to be nothing we could figure out (remember the head lumps after 3F8?). So, it could be non-tumor related, but the possibility is realistic enough. The plan is to see if it goes away on its on soon.

The Ugly: I probably should stop this post now given that I am going through a major phase of "I hate cancer" right now...but I can't stop myself. Today as I was driving up here I started feeling a lot of sorrow for what Paul has to go through in his life. For example, any next day could bring a cool trip to Texas Motor Speedway, a normal day of school, a visit to Six Flags, or it could bring an 8 hour stay in the clinic getting blood and platelets, having drugs pumped into his body that make him feel crappy, a fever from who-knows-what that gets him admitted and then more antibiotics or any number of side effects that result from all the medical assaults that he has been put through in the last 4 years. While I was in the playroom with Jack and Whit this afternoon (Paul was with Leigh in the ER awaiting admission), a young mother walked in with her 2yo daughter in tow on a pole. I overheard her up-beat conversation with a friend that she had just been diagnosed (4 days ago) with NB. She went through the same speech we had been given 4 years ago. Tears filled me eyes, and I got a lump in my throat as I thought about what they and the little girl were about to be put through. I thought of all the kids I have met in that playroom. All the stories, some ended, some beginning, some on-going, and I looked on the staff door at the many pictures of the sick, bald kids (one is Paul from 2 years ago). I thought..."this is just one clinic, in just one hospital, in one city. How many kids are suffering?" More tears, more lumpy throat. Like so many times before...I reached that point where I could either be really angry, sad, not very hopeful, etc., or I could force myself to see that what has happened has all been under the watchful eye of a loving God who demands my trust in Him particularly during these hard moments. It doesn't seem possible to have that trust sometimes. So, I was pitiful for a bit...then I made up my mind; I introduced myself to the young mother, told her a small part of our blessed journey with Paul and promised to track her down while Paul is admitted this week; I told her I could give her some hope.

Pray for us this week. It's not going to be an easy one. (-;

Clinic Buds

Paul was in need of some blood and platelets today so we were in the FW clinic by 10am and stayed most of the day. Paul was excited about seeing all his clinic buddies and had a great time. Paul is doing very well these days and his appetite is on the rebound. We have started Paul on a number of immune building and nutritional supplements that he will continue to use as we begin the future rounds of chemo in a couple of weeks. We have some fun planned for the weekend if the weather holds up. We love knowing that you all are praying for Paul. (-:

Picture Time

Paul had a good clinic visit yesterday, and then went to school today. Enjoy the race weekend pictures!


Jack is actually not asleep!

Who's #1?

Whit, Mr. Dudley and Mr. Darrell


The Master

Paul and Kebin Kinsley after putting the decal on the funny car (Saturday morning).

Speedfest Weekend

This weekend was all about racing. On Saturday, I took Paul and Jack to the Texas Motorplex to meet the driver and team of the Funny Car "Wild Child" - Kebin Kinsley. The weather didn't cooperate, but we still got to meet and hang out with Kebin. We were invited to attend because this team puts the name of a child with cancer on the car as a sort of "sponsorship" and to raise awareness about childhood cancer. Paul and Kebin placed a decal of Paul's name on the car together. I got some great photos that I will add soon.

The weather turned out to be ideal for a NASCAR race on Sunday. All five Saxons and three other friends made our way to Texas Motor Speedway to place our hopes on our favorite drivers. It was a fantastic day in every respect. We had once-in-a-lifetime seats, and Jeff Gordon, while he didn't win, gave us all a great thrill. I'll have some photos soon.

Paul update: Paul has pretty much returned to being himself. His appetite is coming back, and most of his meals are pretty small. But, the good news is that he says he is hungry. He has a clinic appt. today, and then hopefully we can have him in school some this week.

We know you are spending time in prayer for Paul. (-:

Back in God's Country, i.e., Texas

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I forgot to mention this announcement for us TX folk - Next Wednesday is NB day at Purple Cow Diner on Hulen just west I-30 from Cook. Actually it is lunch for life day.
When: April 18th
Where: Purple Cow (all locations)
Time: 3:00- 9:00pm
Why: 15% donated to www.lunchforlife.org
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CHECK OUT THE VIDEO (QuickTime) ON THE RIGHT SIDEBAR! Thanks Miss Holly!!!!

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The two days that Paul spent in the clinic in VT with the team there might be the most productive and efficient days of treatment he has had in a long while. The Cook clinic handles up to 37 kids a day in their clinic (because they're great too!), but when the ratio became 1 nurse/doc to 1 kid, it's amazing what got done. Anyway, if you are a parent of a NB relapsed kid out there wondering if you should go to VT to get in on this trial...book your trip today. I'm not suggesting that there is a cure or silver bullet up there, but there is hope and optimism with people who go to bed and wake up thinking about curing NB. And the best part...they think about it in the context of giving your child a high quality of life (e.g., low toxicities) and try to do things through a parent's eyes. Once again, VT gets my highest endorsement.

Treatment Plans - Dr. Sholler and I talked for probably 3 or 4 hours total while I was there about the next steps (I could have had more of her time, but I actually had all my questions answered which may be a first for me). What we agreed on is this: a four week cycle where week 1 is 3 days of Topo/Cy + 2 days of IV Vit. C. He'll also get a dose of Zometa. He'll take his Nifurtimox pills (same as his trial dose) the week before, during and after this chemo week. Week four is off all therapy except for some supplements that I plan to do. Speaking of supplements, while these are not officially on the protocol, I plan to give him Artemisinin and BioBuild as well as Megace. We talked about Celebrex and a few other drugs, but I am happy to start with this plan and see how things go. Incidentally, it came up that a new drug out there called Velcade is showing some promise and Sholler was very pleased with what she has seen so far in a patient or two. Keep that drug in mind; I think it will play an important role at some point.

Paul Update - as you know Paul has had a couple of positive blood cultures. He is currently taking Vanc at home, and we are hoping to clear this infection soon. He still is struggling off/on with nausea/vomiting, but I think we are seeing signs of an appetite and no fevers for the last few days. Pray that he'll feel good for our big race weekend.

Nifurtimox trial update - to date, it sounds like Sholler has had less than 10 or so patients enroll in this study. I was stunned, but I think I know why. My opinion, she gets lots of calls (she told me this part) and talks to lots of parents, but their kids are too sick to travel. This probably means that these kids have been through the usual fruitless NB-relapse pipeline: exhaust options at your home institutions (e.g., radiation, Topo/Cy, VP-16, etc.), then go on to Sloan for 3F8 something, maybe do some MIBG therapy, try out CHOP...and by the time she gets the call, the kids are too sick, too progressed. Home institutions are not encouraging families to call VT and consider Nifurtimox. My beef? These kids are basically doing the study (e.g., Topo/Cy) anyway when they first relapse. Why not work in a small yellow pill that could really make a difference? Common sense. Anyhow, unless home inst. docs start encouraging parents, this study will take even longer and more kids will lose ground.

OK. Off my soap box for now. Bottom line - Nifurtimox is a no brainer for relapsed NB. Sholler and her staff rule.

Rock on...

P.S. Pray on as we press on. (-:

Home Sweet Home

Well, everyone is home and all together this evening. Praise the LORD! It is good to have all my boys under one roof. Paul and Terrill arrived in Dallas around noon today. At Paul's request, we went to Red Lobster for lunch, but unfortunately, Paul didn't eat. Instead, he threw up (however, he's very good at this and had plenty of time to make it to the bathroom).

Terrill was very pleased with the results of the trip. They got a lot accomplished treatment-wise, and he and Dr. Sholler devised a unique treatment plan just for Paul - one that will be aggressive against the remaining disease, but still has a low enough toxicity to ensure a good quality of life for all of us. I'll let T fill you in on the details later.

As I'm typing this, I'm watching all four of my boys jumping, rolling and playing on the trampoline. Paul is mostly sitting on the edge watching, but just the fact that he is out there in the mix is a thing of beauty. Snow cones at Mr. Snow are in the plans for after dinner. Thank you, Lord, for today...

More From Vermont

Paul is continuing to do well, but still not back to good ole' Paulie just yet. He's managed to keep the fevers away, but is still suffering from stomach pain. When I talked with T, they were on a "field trip" to the gift shop to procure more Sour Patch Candy. This seems to be the meal of choice these days. I guess having cancer should have its perks!

Paul needed some blood this morning and then Dr. Sholler made the decision to do more chemo (since all indications are that he is on the downside of whatever was bothering him). They plan on "breaking out" around 5 today and will either spend some time at the museum or stroll along Church Street (This is a long, beautiful, pedestrian-only street full of shops, candy stores, and home to the very first Ben & Jerry's). I doubt if Paul will do much shopping, but I bet he'll walk away with a pocketful of change that he finds!

Tomorrow will start very early - their flight leaves VT at 7 am!! Thanks for your constant support and faithful prayers. You truly are our community of faith.

All in a Day's Work (Tues. update #2)

Things are progressing as planned at the Fletcher Allen Health Care Children's Hospital today. Paul has gotten platelets, had an EKG, had minor surgery, gotten a dose of Zometa, been hydrated, and is currently almost done with a round of chemo... and it's only 3 pm VT time! We continue to be amazed at the level of care we receive from the VT team. Not only are they extremely helpful and caring, and amazingly competent, but also incredibly efficient... Thank you, Lord!

When I talked with T, Paul had requested chips, and nurse Kevin was on a mission to locate some for him. Paul continues to be fever-free and naseau-free, so THANK YOU FOR YOUR PRAYERS! Somehow, in the middle of all they accomplished today, T was able to sit down with Dr. Sholler for about an hour to discuss a game-plan for Paul. The bad news is that she has not had success with his tumor "sample" that she was working on in her lab because apparently, it has been extremely slow-growing. (During his bone marrow biopsy today, she extracted more cells to continue trying). The good news is that she definitely sees some options for us and is excited about a couple new things that we hadn't heard of previously. I wasn't able to get the details, but will post more later.

Overall, the little P-man is doing well and looking forward to another trip to the ECHO museum... Hey - we're all about FUN here!!!

Safe and Sound in Vermont! (Tues update #1)

After getting a big dose of IV antibiotics in the ER yesterday, Paul and T headed off to Vermont. Paul travelled well, slept during most of both flights, and they arrived to the RM house around 11 pm. This morning, Paul seems to be feeling better. He hasn't had fever in over 12 hours, and has been hinting at an emerging appetite. Of course, when you haven't eaten in 2 days due to an upset stomach, it is best to start off slow. Understanding this, Paul decided to have some Sour Patch candy for dinner last night. YUMMMMMMMMM....

Today will be a long day. Paul has already gotten a unit of platelets and had an EKG this morning, and is getting ready to do a bone marrow aspirate and biopsy (remember - this is the procedure where they extract a sliver of bone from his hip and look for NB cells). After that, he'll get another dose of chemo. I think they will both be pretty beat up tonight. Please pray for patience and joy in the midst of it all today.

I must admit, I struggle between gratitude and pity a lot of the time. I am grateful that Paul has had some wonderful days recently. I am grateful for getting his disease under control. I am grateful every morning when he walks out of his room rubbing his eyes and smiling. However, I dread tomorrow and what I know can change in an instant.

I am constantly amazed when I hear from someone who has felt a burden to pray for something specifically. It happens often and it is always right on target with our needs at that time. No doubt, the Lord is at work. And when I make the choice to see it, it is a beautiful thing.

"The LORD favors those who fear Him, those who wait for His lovingkindness." Ps. 147:11

To go or not to go...

The plan was to come to FW yesterday and for us all to enjoy Six Flags before we fly out to VT late on Monday afternoon. After overcoming the weather (it became warmer), something else happened to change our plans - Paul got sick with a fever and vomiting. He felt pretty bad all day yesterday although he did feel good enough for a few hours to get in some fun time at Six Flags. Since we are staying in FW today and need to drop by the clinic to pick something up for our trip, I may go ahead and take him to get looked at, etc. He had a pretty good night, but is still dealing with some kind of illness. He was getting treated for an ear infection (that started late last week), and perhaps, he needs a more powerful antibiotic. Or, it could be GI. At anyrate, it threatens to derail our trip today if we don't get more information or if he goes down hill more. Please pray that Paul will get better today, and that we can proceed with our trip.

Snow on Easter?

Happy Easter! We had an unexpected day of snow yesterday. The kids had fun playing in it, and watching the huge snow flakes fall all day. The Lord is getting us ready for a week in VT.

The preliminary result on the MIBG still showed some uptake in various places, but I have still not seen the official report. Comparing these scans to the last will be difficult since we have a new machine at Cook where the resolution is much better. It does seem apparent though that the CT has shown some improvement. I am looking forward to discussing Paul's future treatment with the VT team this week. There have been a lot of drugs, supplements, etc. tossed around that might go well with the treatment drug (Nifurtimox) that we can now use as we wish since we finished the trial. This gives me some hope.

Paul is feeling great, although he did have the beginnings of an ear infection this week. Our family doctor, Dr. John, took a look at Paul's ears and put him on an antibiotic. He's in great shape now.

The other big news...my buddy, "Mr. Darrell," scored some huge points by getting us some tickets and pit passes to the NASCAR race next week at Texas MotorSpeedway. He has friends in high places (thank you Holt and Sarah!!!), and these goodies were accompanied by a signed 24 hat from the man himself - Jeff Gordon! All this, of course, was met with a bevy of smiles from Paul.

It's going to be a busy week of travel and decision-making. We know that your prayers cover us like a warm blanket on a cold, snowy Easter morning. (-:

French Re-Fries

Today after the scan and clinic appt. Paul said he was hungry for lunch. He wanted Burger King french fries. So, on the way home I went through the drive-through at BK for him, but I chose the more healthy fast-food Tex-Mex place next door. He really likes refried beans these days, and he was eating mine that came with my meal. He said, "watch Dad." And then it happened. A new delicacy was invented. He took his warm, crispy fry, and used it like a spoon to scoop up a big ol pile of steamy refried beans. "Mmmmm," he said smiling with brown beans stuck to his lips. Oh, and he also had ketchup on the fry. He ate the rest of his fries this way, and I was wondering what it would do to a 41-year-old man's body to eat that for lunch. Maybe next time.

The result of yesterday's CT showed that the lesion on his scalp, that was at one point 6mm, is now "resolved." There remains some scar tissue, but it seems the tumor there is gone or at least almost gone. From the CT, there was nothing new, and beyond that it sounds like it is hard to tell how much of what is seen is active tumor or dead. That's one reason to do today's scan, the MIBG, since the isotope is possibly more precise. I have no report on the MIBG, but from my untrained eye, I believe I saw some uptake in the old region of his hip, and a few other shadows in old areas. It's hard to say anything from what I saw except it seems like he still has some area in his hip. But, it's obvious to me from his lack of symptoms and his normal activity level that it is improved some over the last 3-4 months. If we get an official radiology report, I will report it.

We are thankful for these results! Pray on folks....

"Kramned"

A funny story. Paul and Jack are still going at drawing/coloring the nations' flags. They have a bunch now and have written the names of the country on each one. Paul, not being the completely proficient reader just yet, showed me "Kramned." Now, there are some countries I have not heard of, but this one seemed suspicious. It turns out that the flag he was viewing from the map was upside down. You figure out the rest.

Paul and Leigh were up and back quickly from the CT this morning. All went well. We have no results. Tomorrow is a clinic appt. and then the MIBG.

We know we are surrounded by a legion of praying people. (-:

Almost perfect

It was almost a perfect weekend. The ONLY thing that kept it from being so is that Jeff Gordon was unable to pass Jimmy Johnson for the win at Martinsville. Oh well. Besides that, the guys enjoyed some time with their visiting cousins and aunt, went to church, played outside, and managed to disperse toys throughout the house. Paul is really into drawing the flags of all the nations. He and Jack have quite a collection now.

Paul and Leigh went on up to FW this morning after a local CBC showed he was running low on reds and platelets. We were hoping he could go to school today since he'll miss Wed, Th for scans and then Friday is a holiday.

Still, these are some sweet days!