Close to the End of Radiation (-: !!!

A photo of snaggle toothed Paul and his pal Madalyn.


I like the picture of Madalyn and Paul so much, I decided to leave it up for a while longer. Paul is down to two more radiation treatments. The lump on his head is long gone...praise the Lord! Also, there is no limp or back pain. So, it would appear that we got some good punch out of this chemo. We'll begin to find out later this week when we do a CT/bone scan. Early next week we'll redo the bone marrow aspirate/biopsy as well as the MIBG scan. Then, we'll know whether we are in for more chemo or off to NYC. Please pray about all this; life could get even crazier for us soon.

Paul and Leigh went over to the clinic, and he was a little low on platelets so he got some of those. He might need blood later this week, so we'll check on that on Wed. However, Paul is feeling quite good. When it cooled down yesterday evening, we ventured out to play some Putt-Putt. We all had a great time. Paul is playing hard and is back to good ol' Paul. The area around the bad tooth is no longer swollen, but still a little sore. So many answered prayers here.

We continue to give TPN at night, but Paul's appetite is getting stronger. The doctor wants him to gain about 1kg more before we get off the TPN (by Th AM). I think we can do that the way he is eating, but we may have to get MawMaw back down here to cook up some more fried chicken, biscuits & gravy (which he loved on Sat. night). I gained about 10kg after that meal. Pray for Paul to have a good appetite and weight gain. Thanks for all the prayers and blessings you are sending our way! (-:

Back Home!

It took a while, but Paul and I finally made it home yesterday evening. The hold up was waiting on the TPN to arrive, and then the nurse had to give me a crash course. When we got home, Paul ate some meat and beans which is exactly what he will need to do in order to gain weight and get off the TPN. We're only ordered to give the TPN for 5 days, but it is a good sign that he is ready to eat. This morning he is chewing gum: another good sign of a healing mouth (I guess).

Paul was so happy to get home and immediately picked up where he left off playing with his brothers. It was a joy to watch. He slept great, and awoke once at around 5am and called me in to see the dollars that the tooth fairy had left. He was smiling that snaggle tooth smile from ear-to-ear. Classic!

The plan for the next day or so is to keep him at home and in "social isolation." I think being home is entertainment enough. Thank you all for praying so much this week!

Discharge Today...Sometime

It takes minutes to get in the hospital, but it takes hours to get out. I guess that is as it should be. Paul had another good night. He ate some pizza last night and some snacks. He continues to get "TPN" which is the name for IV nutrition to help him gain back some weight and get all is vitamins, minerals, etc. during these days of poor appetite and sore mouth. Makes sense; the problem is that we need to continue it at home for the next five days or so. That means that we have to coordinate with a "home health" agency, get the "food" and get educated again on how to hook up everything. It's fairly complex. Leigh has always been in charge of TPN when we did it in the past, but that has been a couple of years and she'll need a refresher course (so I will have to pay attention today when it is explained to me). I'm sure it will all work out, but it means Paul and I need to stay around today longer to get all the stuff.

Anyway, Paul will be home for a few days. We'll then finish up radiation M-W next week, have a couple clinic visits to check counts, and then start talking about revaluation scans. There really is no big break in site at this point, but that is OK because this whole thing is in the hands of the Lord. He gives us enough "manna" to make it through each day...and even doing so with joy. Thanks for praying. (-:

Much Better

Paul had a fever free night last night, and so far so good through the morning. Also, his WBCs are coming in. Our doc dropped by to say that if there is no more fever, we'll get our ticket out of here tomorrow after radiation. Please pray for that; we need some time at home before another busy week.

So many of you have emailed asking what sort of "things" and food cards Paul would like. I always feel weird about putting that stuff on the blog, but you seem to persist. Paul will eat at any of the fast food chains except Taco Bell (he doesn't think outside the bun yet I guess). So, Sonic, Macs, Wendy's, Whataburger, Jack's, BK, etc. etc. As far as small things to play with...he loves anything NASCAR (especially Jeff G.); he has a lot of the small cars, but he always loves them whether he has them or not. Also, Monster Trucks and various action figures. Just keep it small. Coloring books and activity books are good too. Thanks to you all for keeping Paul in your prayers!

Some Improvement

Paul seems to be doing better since the tooth was extracted. Leigh tells me the swelling is reduced, and Paul has not complained of pain. Fever is also lessening in frequency. So you might wonder...what gets us a ticket out of the "Get Well Motel?" A day with no fever AND a white count that goes above a certain criteria. It could be tomorrow, or it could be several more days. Pray against fever and pray for WBCs.

Leigh and I will make the switch today. Jack and I have been having some good times together here. He and I will drive up today and let the two of them play for a while. Whit is going to be coming home on Friday. I have really missed him, but he has had a great time with his grandparents. Keep the prayers coming. (-:

P.S. You'll notice some new links on the upper right; I am in the process of adding some new essay links from Leigh, but they won't work for a few more days.

Tooth Fairy On Call

The dentist pulled out Paul's tooth this morning. He commented that the tooth was already loose, and when he pulled it some gunk came with it suggesting infection. A culture will reveal what we are dealing with germ-wise. Anyway, it was only the one tooth, and it is now in a little box. Paul looked at his new smile in the mirror. There is still some swelling and pain, and I would expect there to be some fever as the healing gets going. When Paul's WBCs increase, that should really speed things up. Please pray that Paul's tooth area will heal quickly and that his blood counts will go up soon.

Tooth Coming Out

The ped. dentist dropped by this afternoon to take a look at Paul's tooth. It didn't take him long to say that the tooth had to go. Paul is scheduled to get the tooth extracted tomorrow morning. He is pretty uncomfortable with the pain and swelling, but hopefully we'll see some improvement soon after the tooth comes out. It's a hard way to earn your first "tooth fairy payoff," and we'll try to make it a profitable one. The dentist mentioned that more than one tooth may need to come out depending on what he finds once he is in there. You might wonder why all this has happened now. With a suppressed immune system this previously damaged tooth gave germs a foothold, and the infection blossomed. Paul is hanging in there; he beat the snot out of at least one child care worker today in UNO and dared other contenders to show their face. You gotta respect that. Pray for a routine tooth extraction, less pain and a return to normal blood counts soon to get his immune system back in action. We serve a God that created bone marrow you know. (-:

A Bit Better

I left Paul in good hands this afternoon; Leigh drove up, and I came home. Paul continues to get IV antibiotics. He has not cultured any bugs so that is good news. A good guess is that this tooth is infected and at the "root" of all the fever (a little pun there). The tooth is still bothering him, but the fever seems to be less frequent. The plan is to go on with radiation tomorrow, and the ped. dentist is going to stop in at some point and make a recommendation about the tooth. It probably ought to come out. We'll see. Paul will remain inpatient for a while until we get all this worked out. He is doing fine, and it is actually easier to do the radiation treatments inpatient. Of course, it's always nice to get OUT of the hospital. Thank you for the continual prayers.

Back at Cook for the Weekend

It's been a busy few days since my last update. We finished up radiation without any problems on Friday. Afterwards, Paul and I headed to Tyler to spend a day or so with Nana, Grandpa and Jack. I had intended to head to Waco with Jack on Sunday, but a little thing called fever has messed up our plans. Paul's white cell count is still very low from the chemo, and fever under those conditions usually gets you a ticket back to the hospital for antibiotics, cultures, etc. It all started on the way to Tyler when Paul complained about his tooth (right front). Around New Year's Paul injured his tooth on a coffee table, but the dentist said it was fine as long as it didn't get infected. When he awoke this morning with a very sore, swollen gum around that tooth, I knew what had happened. It does look like an infected tooth at this point, but it will be Monday before we see a dentist up here. My guess is that it will be extracted. Paul has alreay asked if the tooth fairy would show up. I'm sure you know what I told him. (-;

Anyway, I am very glad we came up from Tyler. He needed platelets and blood, and this infection could have gotten out of control with such a low white count. As I write, he is lying in bed watching TV not feeling too well, but I am happy that we are here so he can get the care he needs right away. He really has been through so much this summer. I expect he'll turn this around soon especially with all the big gun antibiotics he is getting. Please pray for Paul to feel better soon, to get this tooth thing resolved quickly, and for a quick bounceback so we can get on with treatment. I know you are all praying in high gear.

Off to the Movies with Madalyn

Paul and Leigh were in and out of radiation today in about an hour (including recovery). They were back in Waco before noon, and then Paul went with his buddy Madalyn to see a movie. He is feeling great and playing hard. He especially enjoyed playing with his friend Gabe in FW. Thanks for praying as we press on.

First Day of Radiation

Paul's first day of radition went well. The first day is always longer than the rest since the set-up has to be established. Tomorrow and the rest of the days should be shorter and more routine. Paul did fine; he awoke grumpy in recovery, but soon returned to himself. Tonight he was having a good time with Gabe playing a monster truck XBOX game. For all you out there who continue to be compelled by the Spirit to pray for Paul's healing...thank you and keep at it. (-:

A Great Weekend

Paul continues to do well and improve. A huge answer to prayer is that Paul has not had any of the post treatment side effects. His appetite is fairly good, and he is playing and smiling. It is good to see the good ol' Paul again. He still has a limp, but that seems to be improving, and a very good sign is that the lump on his head is much smaller and almost gone.

Paul has a FW clinic checkup late this afternoon, and then tomorrow he will begin radiation treatments for the remainder of this week and the next. He has always done well with radiation side effects. The most inconvenient and difficult part is the sedation.

Jack is heading to Nana's for a few days to play with cousins and get spoiled by his grandparents. Whit is having a blast in MO. Please pray this week for a fairly uneventful week of radiation, and that these treatments will continue to knock out Paul's cancer.

Home and Doing Well

Paul and I were home by 6pm yesterday, and we went directly to Red Lobster to meet Leigh and Jack...his new favorite place. Paul awoke feeling great, and I believe he feels better now than he has in 4 or 5 weeks. It does appear that he is having a good response to the chemo. Today we are planning to get out and have some fun before his white counts go down in the next few days and limit his time around others. We are so thankful to God that Paul has done well. Your praying is making a difference. Whit is living it up at Mawmaw and Papa's house this week in Missouri. I've asked them to tell him "no" at least twice a day so he won't forget that the word exists. (-:

Home Today!

Unless something really unexpected happens in the next hour or so, Paul will be discharged today. This is much sooner than I originally expected, but since he has had no fever and he has done so well, we are getting our ticket out of here today. I arrived yesterday to find Paul much improved over what I remember from last Sunday. Our doctor is very pleased with his tolerance of the drugs, and from the way he is moving around and the fact that he has had no pain meds for a couple of days...she is also satisfied that Paul is responding to the chemo. The plan for next week is to begin radiation on several spots. This is outpatient radiation but will require sedation as in the past, and he will need platelets before we get started next week. But, we'll think about all that after a fun weekend. Thanks for your prayers this week; we can't do it without your prayers and support.

Maybe a Shorter Stay

I've had in my head that this was a 2-4 week hospital stay. Yesterday our doc mentioned that IF Paul can keep fever away and continue to do well, he might get discharged this weekend. If that happens I'm sure we'll be back up here for blood next week as well as radiation, but it would be nice to have him home for a few days before we start all that. So, pray against infection as his blood counts drop. Paul did awaken in a happy mood this morning. It could be that he feels better after finally getting a good night's rest, but whatever the reason, we are glad. I am heading up there today to give Leigh a break for a while. Whit is on his way for a week of serious grandparent spoilage in Missouri. Keep your prayers going...

Two Days Down

Paul received the last day of one of the drugs through last night. This particular drug was/is the most toxic. The remaining two will run for shorter durations for three days (starting today, I think). These two are less toxic comparatively. Paul doesn't feel too good, understandably, and his appetite isn't very good. He does still like his favorite foods to be brought in like Chili's, the usual fast foods, and we hope he'll get his appetite back soon. He was up playing UNO when I called, but he's pretty puny. This morning Leigh had a consult with the radiation doc to discuss using some radiation on some of these disease sites. It looks like we'll be doing that next week. We are relying on you all to continue to pray against toxicity and especially for a major response to these drugs.

New Expectations

We had a long discussion with our doctor yesterday about what we are doing; we all seem to be on the same page with the aggressive approach we are taking as a way to get to the NYC treatment. We really had few expectations with respect to how long Paul would be in the hospital. We now know it could be 2-4 weeks. One of these drugs we are using drops his counts pretty low, so he will be watched closely. Any fevers, etc. would lengthen his stay. It wasn't a particularly restful night. The drug began at 9pm last night and ran for 6 hours. During that time they wanted to monitor urine output which meant Paul had to get up and go every hour. They were pretty tired this morning. Here is the prayer list: good tolerance of the drugs, rest, no infections, and that these drugs greatly affect the tumor.

Six Flags, Jeff Gordon & A New Plan

Leigh had been trying to plan the annual Six Flags day with my sister and her kids, and it finally came about yesterday. We weren't sure if Paul would be up for it, but I think not even cancer can keep a kid from going all out at Six Flags. They had a wonderful time and stayed all day. Leigh, Jack and Paul stayed the night with the Callisons in order to be there for the Monday Cook visit. Whit and I are getting in some good father-son time here, and our day and evening included watching Jeff Gordon take another win and a trip to KiddieLand for some train rides and Putt-Putt.

The treatment plan changed yesterday. The second opinion from Sloan-Kettering came in, and Paul could go there for the 3F8 antibody down the road IF we can get his tumor under control. In light of that, two new options at Cook were put before us. The one we chose is an inpatient concoction of chemo drugs that P has never had, but their dosages are higher. This will yield more toxicity, but the payoff could be greater than on the other drugs we were considering. Leigh and I are of one mind that if we are going to try to get Paul to a minimal disease level again then we should go at it aggressively. Paul will be admitted today, and we'll get started.

I know so many of you are praying for us as we make decisions, and you are praying for Paul. God is no doubt carrying us through this time, and we continue to glorify His name and entrust all things to Him.

Doing OK

Paul is doing OK considering that he is in some pain, and we are having to wait on Monday to get started on chemo and get something besides OTC pain meds and Morphine. The chemo we are going to begin has a low toxicity (we think and hope), but also will take longer to affect the tumor's progression. Our goal is to get things controlled and go from there. We are seeking an opinion from Sloan-Kettering in NYC. We aren't necessarily going there, but if there is an option there that has promise, we are interested in taking a hard look at it. Please pray about our decisions about treatment.

This weekend Leigh had a big garage sale that went well. Paul perked up enough to go along with his friend Madalyn (and her grandparents) to...you guessed it... Putt-Putt. It was hot, and I don't think he felt great, but he's hard to keep down when it's Madalyn AND Putt-Putt.

Pray this week for: Paul's pain to lessen; Paul to have a nice response to the new treatment; Paul to have few toxic problems...and of course...a cure. (-:

Praying and Planning

Thanks to you all for the prayers. I don't know what it would be like to go through these valleys without a lot of praying people out there. The current plan is to begin "the concoction" of chemo on Monday. It's a 2-week outpatient cycle, and will ultimately yield some level of the usual toxicities of chemo but hopefully at lower levels. This will probably be much like the chemo P did just after relapse last year. He did very well on it (10 rounds) before the tumor broke through. If we can get that kind of response this time, we'll most likely look at another antibody therapy, possibly the one in NYC. We are beginning to explore that and other therapies now. Paul needs some pain relief between now and when this new chemo starts working. We are discussing some options there too. Here is when it is too easy to start putting all your trust and hope in medicine and science. God alone can provide the healing we need. We'll use our heads here with what medicine and science can do, but ultimately we'll pray to God for a direction and healing. Stay with us...

Scans are in...

Not much good news to share on these scans. Basically the disease has progressed and the lump is a new area. The doc was shocked it wasn't causing more pain. While I am confident that this particular antibody has great promise, it is clearly not what we want to be doing with Paul right now. We are getting a list of some options, and the prime one is probably to get on top of this disease with the chemo we were going to use just prior to the clinical trial opening. I have heard good things about its use in relapse kids. So, not good. Not what we wanted to be hearing after waiting for this clinical trial. We will keep trusting the Lord, and see where He takes us and Paul. Please pray for us as we decide things, and pray for Paul's pain to subside. And, while you're at, make sure and pray for Paul's cancer to spontaneously go into remission. That would be cool.

Not a Good Sign

Paul continues his see-saw existence of feeling better then feeling pain. While it appears at times that he is overall getting better I am not sure of that any more. Some areas of pain are better, but then a new one will emerge. The final bad sign for me was a small lump that appeared on the top of his head last night. As far as we know he had not been hit there, and it came up between shower time and just after bed time. Sometimes NB shows up like that...little lumps or bumps on the head. If this is the case, it means we'll need to make a change in Paul's treatment. The thought of that makes my stomach churn.

We'll be doing a bonescan and a CT hopefully tomorrow to see what's what. Pray against this disease. Pray for Paul's pain to stop, and pray for us as we possibly are faced with some decisions soon. We're not asking God "Why?," but rather trusting Him and acknowledging that He is in control of Paul's life.

Happy 4th!!

It is good to have everyone at home for the Holiday weekend. I follow a few other kids' webpages, and I know it is not the case for many of them. Even though things have been a bit stressful this and last week, at least we are home. That is easy to take for granted when you have a sick kid. We are thankful for all that we have been blessed with regarding Paul.

Speaking of Paul, we continue to measure his improvement in gradual, small increments. He seems to need pain medicine less often; when he gets it, it seems to be more effective. His sleep has been a little better, and we have seen longer and more frequent flashes of the good ol' Paul in the last day or so. Overall, he does seem to be moving in the right direction, but it has been very slow. Yesterday Paul had a pretty stubborn nosebleed which suggests that his blood counts (e.g., platelets) may be down. If so, he may be anemic as well. We may do a CBC this week to check even though the protocol doesn't require one until next Tuesday.

Anyway, as I said, Paul seems to make some improvement each day. Please continue to pray for his pain to resolve.

Ready for Some Good Days

It was a week ago today that Paul's back pain set in. As it subsided a few days later, it was replaced by a mysterious neck pain much like he had a month or so ago. We never figured out what caused the neck pain then, and this time it is still unknown. It could be related to tumor although nothing was seen on any scans in his neck and known disease sites aren't given him any problems; it could be related to the therapy, but he wasn't on therapy with the last neck pain, and there aren't any known toxicities cited about the neck (although part of this trial is about discovering toxicities); or, it could be a virus of some kind irritating his lymph nodes...or some other unrelated problem. Whatever its source hopefully this round of neck pain will subside like the other, and we may have seen some signs of improvement today. After this rough week we are all ready to enjoy some good days together...especially Paul. Please continue to pray for his pain to subside and for the immunotherapy to be doing its work.

For the advanced Saxon web troller (you know who you are), I am pasting in a web link for the Childrens Neuroblastoma Research Foundation (see below). Here you can see/hear a talk given by Dr. Paul Sondel, our clinical trial's "study chairman," where he gives an excellent presentation on immunotherapy and how it works.

Childrens Neuroblastoma Research Foundation Web Link