What will today hold?

UPDATE (4:30pm): Paul was admitted. He has not had any more fever today, but he was very low on platelets. Hopefully his cultures will be negative, and he'll be there for just a day or so.


Sara, a friend to our family, raising awareness about NB (and Paul!) with her science work at school


Yesterday Paul and I did the usual FW trip for radiation. Then, we killed a little time before meeting our favorite Child Life person and some other kids and went to the FW Rodeo. It was a real treat, and Paul loved it. He especially enjoyed the toy rifle he talked me into.

Despite having a good day, Paul continued to complain of a sore throat. He has a yucky cough to go with it, and early this morning a low-grade fever (this sounds suspiciously like Whit last week!). We have had the fear put into us regarding fever given his low WBCs and steriod meds (that apparently combine to really drop your immunity). We continue to taper the steriod since he doesn't need it, but you can't just go cold turkey since he has become somewhat "adrenal insufficient" while on it. His body needs time to start producing those energy hormones, etc. again. All that to say, Paul may have earned himself a stay in the Get Well Motel until things turn around. I'll keep you posted. As always we need your prayers. (-:

Bonus

Paul at his 6th Birthday Party


After Paul's CBC showed that his WBCs were still pretty low, the VT and FW docs consulted, and we all agreed to give Paul a bit more time before doing more chemo. The radiation along with the tapering of the steriod he's been on have all worked to slow the recovery. So, I guess he gets a bonus week...if you call ONLY getting radiation a "bonus." (-:

A Birthday Party to Remember

Paul and the birthday gang

We're all sitting around this evening still excited about the great birthday party for Paul today. We had it at a local pizza place that caters to kids' parties with all those games, tickets, prizes, etc. We even had a magician (thanks Kellers!). So many of the familiar faces that Paul loves to see were there. He absolutely had a blast. For about two hours today Paul forgot that he has cancer, doesn't get to go to school much, has to take a bunch of pills, sees doctors every week, gets IV nutrition, takes medicine that makes his hair fall out and his stomach hurt, etc. etc. He just got to have fun and enjoy being a kid with his friends. What a blessing. (-:

P.S. Pics on the way.

"What-A-Burger, God and Jesus"

Paul wrapped up his first full week of radiation today, and did another nice job. This was the last day of treatment to his back area. Next week he will continue to get radiation, but only to his head and to an area in his upper leg. I really thought we would be getting platelets or blood today, but both were good. So, after a finger poke, we were on our way to What-A-Burger. Yes, What-A-Burger. I keep waiting on Paul to tire of this place, but no sign yet. In fact, on the way to the hospital cafeteria to get an Icee, I asked him if he really loved What-A-Burger that much. His reply: "Yes. What-A-Burger, God and Jesus. That's what I love." There you have it; the new trinity.

Paul's white blood cells are still pretty low, but we may begin chemo in FW on Monday anyway as planned on the protocol. I talked with our VT doc today, and during our conversation she told me that some of Paul's tumor markers (VMA/HVA from his urine) are basically back in the normal range. This is really good news. She was also very pleased with the reduction in the area on his scalp. All great answers to prayer.

Finally, Nana gets the "Cars" piece of art. Congrats on a wonderful acquisition to your collection Nana. We'll keep putting up new art for the rest of you. (-:

Plenty More

"Cars" by Jack; Bidding is now open.


OK, OK. Everybody calm down. There is plenty more art where that came from. (-: The firetruck has found its home. We'll be putting more art up from Jack and Paul along the way, but we plan on having an art sale in the yard or garage when it's warmer. The guys did get a kick out of you all bidding though.

Today I took Paul to FW. He did very well, and then we went to visit our friend Elesha (fellow NB fighter) currently in the PICU. Of course, after that we had to go to What-A-Burger. Paul is feeling great, and that is such a blessing since he is really looking forward to his party on Saturday.

Exquisite Art

"Firetruck in Bas Relief"


Above is an example of one of Paul's drawings that he would like to sell to raise money for NB research. If you would like to purchase this fine piece, leave a comment. The highest or quickest bidder gets it. (-:

Leigh and Paul were back home from FW shortly after lunch today. Paul did get his What-A-Burger fix before getting home, and he has already placed his order for Fuddruckers tonight. He is feeling good and looking forward to his b-day party this weekend at a local kids' pizza place. Mmmmmm.

Another Day of What-A-Burger

Paul and Leigh had a good day despite things taking a bit longer than expected in radiation. Paul did end up getting platelets this afternoon in the clinic but not before eating some What-A-Burger that Mr. Dudley brought up (Thanks D!). We're going to go without nighttime nutrition for a few days (TPN) to give him a break. Maybe his appetite will really soar.

Whit is still a bit under the weather, but apparently only has a cold.

Appetite Arising

We are beginning to see some changes in Paul's appetite. We have him on an appetite enhancing drug called Megace that has made a big difference in some kids' eating and weight gain. Yesterday he craved Fuddruckers until he got it, and then went to bed on a full stomach of chips and Lucky Charms. Today he is craving What-A-Burger which is where they are now after leaving the clinic in FW.

Speaking of FW today, Paul did his radiation well today, and then they had their weekly clinic appt. to get a blood check up. He squeaked by on platelets today, but will get a dose tomorrow before coming home.

There is no sign of Paul's cold worsening (that I mentioned yesterday) which is huge since if a fever shows itself...it's off to the "Get-Well Motel." However, Whit has a hacking cough and is flirting with fever. He will be seeing Dr. John this afternoon to see what's what. Pray that Paul can avoid these germs this week. Jack, of course, is perfectly fine - a blessing we dare not overlook. (-:

Leigh and Whit Home

One last Christmas picture from 2006

Leigh and Whit made it home safe and sound yesterday. Their trip went very well.

Paul may be coming down with a virus; he has a sore throat and a low grade fever. This kind of thing could get him admitted this week. Pray for him to get better and for a smooth week of treatments coming up.

Contrast

Today was a nice contrast to yesterday. Paul and I were back home from FW radiation before noon. The entire therapy lasted less than 15-20 mins. Paul did an excellent job again today. He laid there while machines hummed and moved, wearing the mask with me out of the room. What a kid!

His biggest problem today is his lethargy and sleepiness. After talking it over with our doc, we have concluded that he may be experiencing "adrenal insufficiency" due to the haphazard tapering off of this steriod (which is my fault). In other words, we need to decide on a lower dose a little at a time, and we need to be better at sticking to it. With his nausea and vomiting it's easy to miss doses or just not give them. Hopefully we are back on track.

Paul has received many emails, cards and even some packages from you all out there for his birthday, and I want to say thanks to you all. I have to brag on one of you out there and say a special thanks...someone sent him an autographed replica of Carl Edward's race car(that's the #99 car for you non-NASCAR people)! This generated a 10.0 on the Smile-o-meter. Very cool. It will look nice in my office (just kidding).

Leigh and Whit will fly in tomorrow after a nice visit to SC. We will all be very happy to see them. (-;

No Complaints

Paul and I left the house before 8am today and didn't get back until close to 9pm. It was just one of those long days. I thought several times during the day that there probably aren't too many kids that have had a 6th birthday like this one. When we got to radiation this morning, they were not prepared for us since the weather had caused their closure the day before. So, we headed to the clinic for a blood check. Paul needed blood and platelets. That pretty much took all day, and we didn't get back to radiation until around 4pm. Paul, eventhough he has continued to deal with nausea today and not felt well, did so well. In fact, he fell asleep while they were doing all their initial calibrations for the radiation. The actual radiation therapy is probably less than 15 mins, but today was extra long as all the machines were programmed. The bottom line is that Paul is quite the amazing boy to have done so much on his birthday and not feeling well. I was going to complain about some things, but forget it. If Paul didn't complain on a day like today, his birthday, then I have nothing to complain about either. (-:

P.S. There will be much birthday party happiness to come when Paul is feeling better; thanks for all your comments!

Yucky Stomach Day

Leigh and Whit were able to fly out of DFW today so that they could attend Leigh's grandmother's funeral in SC. It wasn't easy considering the weather and all that is going on, but I am glad that they made it.

Paul has had a rough day. He starting out with nausea and vomiting and never conquered it today. I am puzzled since he doesn't appear to have a stomach flu or a reaction to anything. But, then again...who knows with all the drugs that flow through his little body. Please pray for this stuff to end. I'll be taking him to FW tomorrow for his first day of radiation. It will be so much easier for him if his stomach would stop bothering him so much.

Milestones

This is a week of milestones. The big one of the day is that Paul was able to lay still while the radiation docs and technicians fussed over marking positions for radiation targets. It didn't take a long time, but you can imagine that this would be a bit scary for a regular kid. Paul did radiation in VT without sedation, but we were skeptical as to whether he could do it here since we are adding on some areas on his scalp. This requires a mask to be bolted over his face while he lays perfectly still. Then a big machine does its work for a minute or so without anyone else in the room. It scares me just thinking about it. But, today Paul went through the simulation and is ready to go forward later this week WITHOUT sedation. Here is the difference: with sedation there is no eating until after sedation and there are a lot more people involved and it takes about 4-6 hours for the whole thing. Without sedation - less than an hour. Pretty amazing and a nice blessing since he'll have 12 treatments.

Another milestone this week is that Paul reaches his 4-year anniversary of being diagnosed tomorrow. A notorious date in so many ways, but hidden are a hoard of blessings that come with living a life that requires a daily walk of faith that few people walk. We have stumbled on this walk many times (e.g., daily), but God and His Church are there to encourage and help us press on. A more joyful milestone is that Paul turns 6 on Thursday. His party is later on, but he is looking forward to saying that he is 6 years old finally.

Lastly, I mentioned that Leigh's grandmother passed away this week...she was almost 90 years old, and she saw many milestones in her day. Leigh and Whit will be flying out to South Carolina to spend time with family and celebrate this woman's amazing life. She will be remembered as a loving faithful woman who loved the Lord and everyone knew it.

Great MawMaw

Leigh's Dad phoned this morning to inform us that Leigh's grandmother had passed away earlier this morning. This is Leigh's Dad's mom and the boys' Great MawMaw. Leigh had a wonderful relationship with her grandmother, and only in recent years, mostly since our health issues emerged, have we not made regular trips to South Carolina to visit. She'll be greatly missed, but we have lots of great memories and stories to tell over and over again.

As for us...we stayed indoors on this cold, rainy day except for getting to the church doors from the car. Paul has felt pretty good today, but it's clear he is still feeling some pain and intermittent nausea. We have taken his pain meds down some, however. He'll have a clinic checkup in FW this week, and we'll probably continue radiation as well. Save a few prayers for Leigh's family this week as you pray for us and Paul.

Hooray for Home!

Despite a canceled flight out of Chicago (does any flight ever get out of there on time?), Leigh and Paul were able to get a later one in the afternoon and then avoid ice at DFW. Myself and the boys had a safe, although messy, drive up to get them. Now we are altogether and ready to stay warm indoors for a couple of days! (-:

Done and Done

Leigh and Paul were in the car with Judy and the gang on their way South (to Albany) to spend the night with them when I called a few minutes ago. Paul's day went pretty routinely in terms of chemo and radiation, but they were there a little longer than anticipated due to Paul needing some blood products. That's actually a good thing since it will keep him feeling good for the next several days before we do a CBC next week in FW. Us guys are anxious to get Mom and Paul home! We'll pick them up at DFW tomorrow afternoon (pray for no ice!). I want to thank all of you who brought meals this week to me and the boys, those of you who helped with Jack and Whit, cleaned the house, and of course...for you hardcore praying people. We can't fathom getting through these weeks without you at our side.

Bullfrogs, Garden Snakes and Other Harmless Creatures

feeding bullfrog
Originally uploaded by leigh saxon.

Here's Paul feeding a nice, juicy earthworm to a very hungry bullfrog. The answer to the question that everyone is asking is: No, he did NOT have to touch the worm. He used some VERY long tweezers!

Yesterday was a fun afternoon at the museum and then we walked to a seafood place on the water. Mind you, it was only 2 blocks, but with a temperature of 19 degrees and a wind chill on top of that, it was the longest 2 blocks of my life!

Through it all, the Lord is faithful to provide... warm coats and gloves from friends and strangers, free taxi vouchers from the hospital, and patient, caring nurses and doctors. Oh, did I mention lots of cuddle time with the sweetest 5 year old in the world? "...and it tasted as sweet as honey in my mouth..." Ez 3:3

Almost Done!

Whit's "Nana and Grandpa paradise" came to an end today. He had a wonderful time there, but now he is back in the cold, hard realities of the parental domain. (-: If you've got to be away from home for awhile as a kid, I can't think of a better place than the grandparents!

Tomorrow Paul and Leigh wrap things up in VT. Paul will have a blood check to see if he needs his tank filled after chemo, and then it's off for a little RNR with Judy and her family. They will fly in to DFW on Saturday evening, and we are ready to see them!

Paul is dealing with some nausea and lack of appetite which is to be expected. Leigh continues to reduce his pain meds too. Please pray that this chemo and radiation in combination with the Nifurtimox will affect these stubborn tumor cells. Thanks to you all for your wonderful support this week.

Paul and Sam

paul and sam
Originally uploaded by leigh saxon.

Hello from Vermont! Paul and I woke up this morning to a MAJOR snowstorm. It was beautiful... big, fat snowflakes falling with mountains in the background! Of course, that also means that the temp has also fallen - or should I say plummeted - to nineteen degrees. It's just killin' this little girl from Texas :-)

This pic was taken Sunday night at the RM house. Sam and his mom picked us up in Albany and drove us to Burlington. Thanks, Judy!

We had a fun day today once we were able to "bust out" of the hospital. Hopefully, I'll get a few pics up of the museum trip we took today.

God is good, and every time I see Paul smile or hear him say, "I love you, Mom" I'm convinced of it even more.

Thank you, Father, for TODAY!!

Reptile Feeding

That's what Leigh and Paul were watching at the museum when I called a moment ago. Today was another busy day for them at the clinic. After Paul got his radiation and chemo they had to go do the MIBG scan early afternoon. Then, they could finally get out and go do something...thus, the ECHO museum. It's very cold and snowy there today so I am not sure how much outdoor time they are getting, but it was good to hear that they were doing something fun finally. Your prayers for all of us are helping us keep it together. (-:

Two Down...

One of the things we haven't missed about doing chemo the last month or so is blood support. Paul has already needed platelets and blood today. This is because of the chemo but also because his bone marrow is just plain tired. The years of chemo have taken its toll. But, that comes with the territory and is only a bother since you have to make time to get the blood products. It should perk him up a good bit not to be so anemic. Nevertheless, the day has gone well. He is tolerating the chemo and radiation well, and laid still for a second dose of radiation today with no problems. He napped much of the afternoon, but awoke a few times to make dinner requests. Leigh was hopeful that they could get out some this evening and walk around the mall and shopping area (looking for coins I'm sure). We know you're praying.

One down

Day one is over, and it went very well. Here is a huge praise...Paul got his dose of radiation today without being sedated. This is a first. Despite being very nervous about being in the room with a big machine and without Mom, he did it. A dose of radiation lasts for less than a minute. Also today, his chemo went in just fine as did all the blood draws and labs. Paul has another packed day tomorrow getting chemo, MIBG dye (for an MIBG on Wed) and radiation. Pray on...

On the Ground in VT

Paul and Leigh had an easy trip to VT today. They flew into Albany where "Miss Judy" and Sam met them and drove them on to Burlington. They were getting settled in late this evening when Paul called. Paul has felt really good all day, and everytime I talked to them he was eating something.

It's uncertain how hard this week will be. It will begin early tomorrow when they must be in the clinic to collect blood samples in one-hour intervals throughout the whole day. We aren't sure when, but somewhere in the day there will be about an hour or so of chemo as well as either a radiation consult or radiation itself. At anyrate, it's a long day and week. I know you all are praying for healing, for a smooth week and for details that the Lord is placing on your heart.

VT Part II

All the bases are covered for tomorrow's trip. Paul is much improved since yesterday. In fact, he is sitting here next to me on the couch eating BBQ (what he calls "steak"). He and Jack have been hard at work this morning in the "art studio" since I told him that he would indeed have some customers. I'll keep you posted on the art sale. I'll also keep you posted on VT if you promise to pray for Paul this week. (-:

Yucky Day

Paul had a rough night of back pain (from the procedure) which we think has caused a good deal of nausea/vomiting. We increased his pain meds today which is making him sleep. Pray that he can recover from the pain and feel good for his day of travel on Sunday.

Art Sale in the Planning Stage

Paul and Leigh got home just in time for a pizza feast at a local place. All went well today in FW except that Paul was starving by the time they left around 3pm. Everything has been done in preparation for Paul's visit next week in VT for the next phase of treatment.

Among the many gifts the guys have received from you all are art supplies and drawing books. For about a year Paul and Jack have really been into drawing and tracing things. Here is an early advertisement. The guys have fomented a grand plan to sell their art in a front yard art stand in order to raise money for cancer research. Seriously. They thought this up after they heard about their buddy Molly Callison's success recently in her own front yard art sale. Anyhow, I'll keep you posted. The art is piling up (mostly drawings), and you may need to place an order if you have any special drawing requests. (-:

Scan Day

Paul and Leigh have a full day of pre-Vermont scans tomorrow. It all begins first thing in the morning with a head CT. Then there is a clinic visit for all the lab work, and there is a good chance that Paul will need platelets tomorrow since he will be sedated later in the afternoon for the bone marrow aspirates. Paul has been really hungry these days so that will be difficult for him to have to wait. I am not expecting much change on these scans. In fact, the lumps on his head have gotten larger, but I do think scans will be helpful in order to better target radiation. Speaking of radiation, we plan to do radiation next week in VT. The targets are the areas of Paul's lower back and one or two bumps on his head. The triple team of Nifurtimox, chemo, and radiation should do some serious NB butt-kicking next week.

Paul's pain remains under control. We are so thankful for such a great holiday season. We have even lowered his dose of pain meds by half. Plans are in place to get things going in VT starting first thing next Monday. It will be a long week of treatment, but we firmly believe that it will be well worth the hassle. Thanks for your continued prayers.

Happy New Year!

I guess the good news about the year 2006 is that we leaned on the Lord like never before. That's a good thing. Highlights included family trips to Disney, San Antonio, grandparents, the ranch, Galveston and of course, NYC and Vermont. Making decisions about Paul's treatment has been the most challenging facet of the year, and it looks as though that will continue on. The blessings we have received have been too many to count. There is a praying hoard out there that is so valuable to us. In tangible ways you all have blessed us with money, flight miles, meals, kid-care, cleaning chores, and uncountable other kinds of gifts. All these things have in a way made 2006 perhaps our most blessed year. So, with that in mind, we press on in faith and trust that the Lord will see His work in our family continue.

As for this week, in preparation for our next trip to VT (a week from yesterday) Paul will be seen for a clinic appt. this week in FW, and we'll be trying to fit in some scans and bone marrow biopsies. Paul seems at least stable to us, and continues to not complain of any pains. Leigh and I are looking forward to seeing what the add-in of chemo and radiation does to Paul's disease level. Pray on...(-: