Less pain, more Sonic

It appears that I struck quite a cord with that last post. Thank you all for sending these comments, prayers, and words of encouragement. I think I can speak for Leigh and I both when I say that we have not lost hope nor do we fear what may come. Despair is for Unbelievers, and that's not us. Your prayers on our behalf have lifted us up on many occasions and still do so. We really do not know what the next days and weeks hold for Paul. He is not in any position to undergo any kind of aggressive therapy, but there may be some drugs that can help him. We continue to consider these options, but like I said yesterday, Paul is clearly progressing, and we have few weapons left to combat his cancer. But...it's never over until HE says it's over. We continue to look to Him. His timing. His guidance as we decide things. So, while Paul is in a place that he would not seem likely to return from, God deals in just these sort of miraculous turnarounds. We'll depend on you praying for just that very thing.

Today, we seemed to have gotten a better handle on Paul's pain. Thank you for praying for that. We did something today that we haven't done much of in the last few weeks - we all got into the car and went to Sonic to eat lunch (always a big hit with my other two little junk-fooders). Then, the big selling point, we took Paul to TOYSRUS where he chose...drumroll...some Lego. He was also up off the sofa this morning and playing with his brothers some. All these outwardly appearing mundane activities are moments of gold to us. We are thankful for every awesome minute. (-:

Pain

Our hospice service is supposed to be the pain expert, but so far we still have a boy in pain. We are looking into a different way of giving his pain meds (e.g., PCA or continuous pump), but so far we are just giving it to him either orally or through his port. It's just not cutting it. Seeing him in frequent pain is very hard. Please continue to pray for relief.

I try to remain positive on this blog. I don't see what being negative would accomplish, but I have to be realistic at this point and admit that what I am seeing Paul go through indicates that his disease is on the move and taking ground that we may not get back. We are about to restart some low dose chemo as well as the drug I mentioned in yesterday's post (Rapamycin/Sirolimus), and we do not despair. However, medicine is not going to heal Paul. Only God answering our prayers for an earthly deliverance from this menace will restore his life now. If God chooses to do otherwise with Paul's life it could be tonight, next week, month or even longer, but it is hard for me to fathom Paul going on much longer the way he is now - fragile, in pain, and with a very poor quality of life. Who wants that for their child anyway? On the otherhand, it's hard to picture this family without Paul in it. In the end, we have always entrusted this journey to the God we believe loves Paul and has a plan for him no matter how short or long he lives upon this earth. We won't abandon that trust now. Please pray.

Another couch day

Paul is feeling as good as he has felt all day at this moment, and we are sitting here watching How to Eat Fried Worms (his request). Today has pretty much been a repeat of yesterday - sleeping on the couch, not feeling well. Last night did go better, however.

The highlight of the day came this afternoon, with a break in the ridiculous rain we've been having. All the flooding has forced wild animals from their natural dens and into the neighborhood streets. Besides a rat, the guys cornered a crawfish (AKA: mud bug) in the front and Paul had to go check it out. Jack tried his best to help point the critter back to the creek. Anyhow, it was good for an excuse to get Paul off the couch.

It's back to FW tomorrow for a checkup. Continue to pray that Paul's pain will subside.

Mom update (my mom): her leg surgery went fine today. Now begins the healing and some rehab. Thanks for praying for her too.

Sofa day

Paul had a couple of good hours this morning before settling onto the sofa to sleep the day away. He did not have a good night since he threw up a few times and complained of various pains. I'm not sure what to make of the pain; it's still the migratory type. His g-button still bothers him too. Basically, he isn't feeling good like I had expected him to by now.

We still have some thinking to do on which drug to use starting later this week. We are leaning towards Rapamycin (for you NB fighter-parents out there), but nothing is settled. I would like to start something though. Again, please pray against pain, upset stomach, and that we can figure out which drug would be best at this stage of the game.

Your prayer menu

We still feel like we have a anchor chained to our hearts as we continue to deal with Elesha's death. I'm sure it will be magnified even more when Leigh and Paul get to the clinic (for checkup) this AM, and they aren't around. We do, of course, envy her total healing; it's just hard to know that we will only see that pretty little face in our minds and in pictures until we all get to heaven. Leigh attended the memorial service yesterday. We know you'll pray for the Debenports this week.

Paul may need blood or platelets today, but hopefully they can get home before dinner and ahead of FW traffic. Paul's weekend was fair. He continues to deal with "button" pain - we guess from continued healing - as well as some transient pain elsewhere. He made it out to putt-putt again, and got some good exercise. This week we'll be making some decisions about a few new drugs to add in. We need you to pray that Paul's pain will go away, and that we can find a drug that works.

Finally, my Mom is having surgery to repair a leg bone sometime early this week. Keep her in your prayers. I was happy to hear that she watched the whole NASCAR race yesterday from the hospital bed. (-:

Another hard day in NB land comes to an end

My mind has drifted back to Elesha and her family all day long (see post below). I rejoice with her and her family that she is "cured" finally. It tore me up to see her subjected to such misery yesterday in the clinic. Now all that is conquered, and I am glad for it. Paul's eyes filled with tears today when we told him. Just like that you find yourself trying to explain the unexplainable. Nothing seems fair. But, we walk by faith and not by sight...don't we? It's hard. Pray for the Debenports.

The Paul report is pretty good today. He finally made it back to the good old putt-putt course today and pretty much picked up where he left off. He beat all of us...for real. I had to help him bend over and get his ball and get up and down stairs since his surgery area is still tender. We were proud of him for getting out and getting some much needed exercise. He continues to take more and more volume of "food" through his G-button (it's a high calorie Ensure-like drink) as well as all his meds. He is still hurting, but only around his tube exit area. Pray that will heal right away.

Finally, we had been looking forward to a visit from my Mom from Tyler this weekend, but she fell and broke her leg while working outside this afternoon. She will need surgery next week to repair it, but we are told that this leg bone will repair relatively easy and heal well. Keep her in your prayers as well as my sister (who lives nearby) since she'll be there to help out with things.

We may get beat down from time-to-time, but we do not despair. God's GRACE is enough. (-:

Our beautiful little friend

I grew quite attached to Elesha, the 5yo, little girl who spent so much time in ICU a few months ago. She got better, enjoyed life and then NB got bad again. She now knows what we don't - how wonderful it is to be released from the pain and suffering of this life and to stand in the presence of God. That's where she is right now, in heaven worshiping, fulfilling her purpose. I know you will pray for Elesha's family (The Debenports) when you say your prayers for Paul this week. I sure am going to miss that little girl.

Visit Elesha's website.

Lung infection resolved

I took Paul to FW today for a clinic appt., but before that he had a quick chest CT to see what has become of the spot on his lung...presumed to be fungal pneumonia. The CT showed that it is now gone. That is a huge praise - first that it wasn't something more menacing, and second, that we can move on with some cancer treatment drugs now that the fungal infection is gone or under control. We'll stay on a low dose of some kind of anti-fungal once we finish the IV caspofungin.

Paul needed platelets today so we got those; he was holding the line on reds. His WBC count is still really low so we will be taking a week off from chemo, and then next week we will decide between several drugs to use against NB. Pray that Paul can stay away from infections.

We are thankful that Paul has most of his pain managed without huge doses. He is enjoying playing cards, putting together Lego, looking over coins (from you loyal Paul pals!) and watching movies. We know you are praying for him.

All day in FW

Latenight Update (10:45pm): I've just finished grading some papers (yes, college profs have to work late occasionally), and I am listening to Paul beat Leigh and his grandparents at Skip-Bo in the other room. It's so nice to hear him having a good time and being his good ol' self again. He's not 100%, but we have seen some nice improvements in the last 24 hours. He is getting an increased volume of food through his g-button plus he has really started talking about eating again (and had a few bites of crackers, chips, and noodles today). His meds continue to go in just fine. Just thought all you prayer soldiers out there would like to know. (-:

P.S. I predict that putt-putt is imminent.

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Paul and Leigh spent all day in the clinic getting platelets and blood. He was very low on both. Paul did fine all day. I believe we have a chest CT scheduled for Th to see what has happened to the spot on his lung (which everyone thought was fungal). In my opinion, while Paul is still nervous about us using his G-button (b/c he is anticipating pain), I think it is becoming less sore. Please keep praying that he'll become more accustomed to it and that the area around the incision will heal quickly.

Some blessings

There are lots of things to list as blessings this past weekend. First, Paul's pain is under control, and it's not taking a lot of medicine to get it there. His pain seems to be primarily concentrated to the area of his tummy where the surgeon placed his tube. It's probably slow to heal there since he has low counts. Please pray that this area will heal soon and that Paul's anxiety about using the G-button will go down. He's still very nervous about us using it although things are going well with its use. A second blessing is that we had a nice weekend with Leigh's parents visiting. We all celebrated Father's Day and me and Papa milked it for all we could get. It was a rainy weekend, but we had a fun time playing indoors, watching the race and movies.

Today Leigh has taken Paul to FW for a clinic appt. He's most likely going to need platelets and maybe blood. The low dose chemo he is taking (VP) still erodes his counts. We are also doing a chest CT to check on his lung infection. It's probably going to be a challenging day for Paul (and Leigh), so pray that it goes smoothly.

Weekend events...

It's another stormy day (and probably weekend) here in Central TX so we will be inside. Paul is staying up too late these days (e.g., watching the Spurs win!) and then sleeping most of the morning away. We are doing better figuring out the new supplies, what connects to what, etc. Yesterday marked the first day he got all his meds and supplements on some kind of reasonable schedule. It's great to be able to give him his meds through this G-button. He is still very nervous about using it since it is sore and unknown to him. Please pray that he would become more comfortable with it soon. I am trying to entice him to get up and around some today; maybe a trip to the video store!

It's a big weekend around here for two other reasons as well. First, Year #17 Anniversary of being the husband of a wonderful wife is tomorrow. Last year we both forgot...seriously (my Mom called to remind us). I'm a day early this year. Also, the guys have been asking me what I want for Father's Day. They're offering me gift cards from Home Depot (when they know I'm a Lowe's man [go #48!], but it's the thought that counts. Anyways..is there anyone out there that does not know what I want for Father's Day? I think not. A great day with the family is all I really want. (-;

Keep the prayer channels tuned. (-:

Setting the record straight...

As you know much of what we have been doing inpatient lately is "pain management." That was best done with IV meds given Paul's esophageal problems. So, in order to get home and do pain management there, we had to find a way to do IV meds (e.g., narcotics). Hospice, yes, the H word, was a reasonable option (actually our only one). Now before rumors begin I want to set the record straight. We did sign on for hospice services SO THAT we could get Paul home and do IV narcotics. It turns out that we haven't had to use IV narcotics since we can use his G-button for oral meds now; however, we didn't know what weening off IV meds would be like for Paul. It appears to be a non-issue. Anyhow, my point is that while we are using hospice services now, this does not mean that we have decided to stop "curative" treatment. In fact, we can revoke hospice (and probably will) when we need to (or can) get back on some kind of treatment that does not qualify within hospice service. Basically, insurance doesn't want to pay concurrently for two kinds of treatment: "curative," e.g., chemo or clinical trials that may have some inpatient time, etc. OR "symptom management," e.g., pain control at home, etc. We continue to look at the possibility of using other drugs, doing clinical trials, etc., but our priority now is to make sure Paul is not in the hospital for pain management and that we get him over this fungal infection (which he may already be over). That's the story. We know you're praying.

Home is good

UPDATE (10pm-ish): The phrase, "Let's go get a snow cone" was enough to motivate Paul to get up and go this evening. Afterward we ended up at Wal-Mart. Yes, buying Lego. He is tolerating all his meds, etc. well through his G-button. He even said the magic words today, "I'm hungry," but I think it will be a while before we see any bona fide eating. Still, it's encouraging. We are hearing from a lot of you out there; the guys are having fun collecting the flattened pennys, coins and other cool stuff you're sending. It's like Christmas around here when you go the mailbox. (-;

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Paul was happy to get home yesterday. He does not have much energy right now, and he is very wary of moving around much because he is afraid his stomach might hurt (around the surgery site). We have his pain under control on a relatively low dose of meds, and he has begun to get food and meds through his G-button. We are still learning what equipment and supplies works best, and at times it has been frustrating. There is a lot to learn. We have had some help from some nurses that have visited the house to help us out. Keep your prayers going.

Getting home

The plan is to get Paul discharged later today after his last dose of radiation. We are working on setting up some "pain management/weening off IV meds" issues. He has used his G-button for a small amount of nutrition today, and that seemed OK. We have some stuff to learn about this new G-button, and your comments have been helpful. Thanks for concentrated prayer this week; it has rescued us. We are not losing hope, despairing, lacking in faith or anything else that less prayer might have allowed.

Eventful Day

Wrap Up (11:30pm)- Leigh used Paul's G-button to administer Paul's oral chemo today; it went fine. Later she put in a tablet (crushed), but Paul got sick shortly after. I think we'll need to take it slow and be judicious with what we do for a while. All-in-all, it sounds like the day went better than expected. Paul has slept away most of the day. I am pressing to get him a ticket home asap. Maybe tomorrow. I need him home. Thanks for your concentrated prayers; there's no doubt it made a difference.

Update #2 (5:30pm)- Leigh got Paul over to radiation without too much problem. The only issue encountered was that his radiation mask didn't fit well since his face is swollen (I guess from this morning's stuff). Leigh and Paul were back in the room when I talked to them, and was sleeping well. The pain team ramped up his meds today in light of all that has taken place. So, I guess the hard stuff of today is over.

Update #1 (12:45pm)- Paul is back in the room with a G-tube placed and ready to be used. There were no complications. The GI doc came out with pictures to show Leigh what he found. Paul had a narrow stricture (that he fixed with a dilation balloon), and the esophagus is VERY red, irritated, etc. This confirms what we thought. The excellent news is that Paul's stomach is in good shape as is everything else beneath that point that he scoped. This should mean that the G-tube will work fine. Pray this afternoon that the radiation will go OK - getting over there, laying on the table, etc. More later this afternoon.

A smile when smiles are hard to come by

Dear Jeff Gordon,
Thanks for winning today. You gave Paul a nice smile.
Sincerely,
Me

Other news...Paul was pretty sleepy today after our late night TV shenanigans. He got up to walk down to the video cabinet, and we worked some more Lego. Tomorrow is a big day with his G tube placement, endoscope and radiation. I am trusting you all to pray hard all day long for him and Leigh.

"Good" day

It's 11pm, and I am sitting next to Paul as we watch Parent Trap. This would never fly in the Saxon home, but here in the Cook Luxurious Inn & Suites, you do fun stuff when you can. And that's been the story today. I would say that Paul has actually had a "good" day. His pain has been controlled, and he only complained about his stomach after throwing back the oral chemo (which smells like something you would use to unclog a sink). Highlights include a visit from Gabe and family. They brought a much awaited Lego that he started. Paul requested a trip to the gift shop (where I am unable to refuse him anything), and that turned into a coin finding excursion to all the familiar coin discovering haunts in the hospital. Paul did a good deal of walking while we were out, and I was sure glad to see him getting some exercise.

The effect from last night's NG tube melee has mostly faded, and Paul has only mentioned it once and with pride (to a nurse where he described how bad it was). Another badge of courage. We did something today that should have happened a long time ago (and I mostly blame myself for the delay). A ped. GI doc came by, and he and I talked for about an hour about Paul's GI problems. He decided that Paul was at high risk for several things that could be causing so many of his problems; among those mentioned are strictures in the esoph., fungal ulcers, GERD, and some other treatable things. He'll do an endoscope on Paul on Monday prior to the G tube placement. Pray that we can get some new information that can help him.

Monday will be a busy and stressful day. Please make is a priority prayer.

NG v. G

UPDATE (11pm): Paul's status as HERO took on another level tonight as he sat in my lap while a nurse attempted to snake a tube through his nose and into his stomach. It caused him to gag, to gasp at breath, and I am sure scared him. Yet, he sat there. Had I been subjected to this I would have killed anyone within killing distance. After a minute of this, it was determined that it wasn't working; his esophagus was too tight. Uh...duh. Hello? Something was said about retrying tomorrow, and let's just say that I clearly articulated the low probability of that occurring. Soon afterward our surgeon that has placed Paul's line dropped by, and he informed me that Paul is on Monday's schedule for placement of a G button. Now we know the answer to the tube question.

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It's nice to be sitting next to one of my heros, the P-Man himself, as I write this post. He's taking a nap here in our Cook bungalo, but I believe he is feeling a little less crummy compared to yesterday. The lump on his forehead seems to be responding to the radiation, and his throwing up/stomach issues are less. Pain is also apparently being managed better and maybe our low-dose chemo is doing something. Anyhow, his score on the Misery Scale is going down (which is good). Someone please pray specifically about the pain in his right hand (fingers to be exact).

I've really debated the NG v. G-tube thing. Here are the arguments: NG tube is a soft tube that goes through the nose down into the stomach (done in the room by a nurse); the G-tube is inserted surgically straight into the stomach wall. Both allow for better nutrition (compared to TPN) and you can put oral meds (including crushed pills) into it. He needs this thing; I'm convinced of that at least. The issue is which "thing" to do. They want to first try the less invasive NG to see how he tolerates food in his stomach. My issue with that is that he's had chronic GI/esoph. issues for a month or more, and I wonder if this tube is just going to be miserable for him. That makes me want to go straight to the G-tube. But what if he doesn't tolerate food well through the G-tube? Have we subjected him to surgery and infection risk when it wasn't called for? These and other elements are banging around in my head.

Just about 30mins. ago, I decided to go with the NG for two main reasons. First, even if I won the debate on getting the G-tube, it would be Monday or Tuesday before we could get it; that's too long when he could benefit from oral meds to go with his chemo. Second, if it turns out to be absolutely miserable for him for two days or so...we'll pull it out and look at doing the G-tube. I realize this risks putting Paul through more crap, but it seems to be the lesser of evils and could offer him some relief in other ways if it works.

It would be nice to have a crystal ball right now, but I am content to know that so many of you are out there praying as we make these decisions. Please don't stop. (-;

Slightly less crummy...

UPDATE (10pm): I have to relay a funny conversation that I had with Jack today as we were sitting around the house. He asked me, "Dad, what kind of car insurance should I get when I grow up? I'm trying to choose between Geico, Progressive, Allstate and State Farm." I couldn't hide my amusement at such a question, and he smiled too when he saw that it cracked me up. I said, "Yeah, that's an important decision, but you have a lot of time, and a lot more commercials to watch before you have to decide." A few minutes later Jack said, "I think I am going with Allstate; I mean, 'can I afford not to be in good hands?'" (-:

One last funny - a joke that Jack made up...what did the boy Bigfoot say when his Dad Bigfoot asked if he was ready? Not Yeti.

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Paul might be doing a little better today. Leigh said that he awoke feeling better, watched some TV and even played some games on her computer. His night was a mixture of good and bad. He did not have stomach problems but did have pain other places and fever. His pain is being managed differently today; he is now on a methadone PCA pump which may have helped. One theory is that his pain/fever is being caused by disease in his bone marrow; if that is the case we need to be doing some kind of low dose/tox chemo so we are going to try and start him on VP-16 today. It's an oral drug and may not work for him if he gets to throwing up again. We are also discussing an "NG tube." This is a sort of feeding tube. It would help us give him his oral meds and different, better kinds of nutrition (compared to TPN). Anyhow, these are today's headlines. We know that so many prayers are going on our behalf and that gives us hope.

Still crummy, but being positive

I keep waiting to post something like "Paul is much better, and everything is getting turned around." While that might happen, it hasn't happened today. There are some good things to report so I will start with those. First, Paul was able to get his radiation program set up and get in a dose to the area on his head today; all that went fine, and we remain very impressed with the excellent, compassionate rad/onc doc we are working with this time. Second, when this doc did a full CT on Paul today to explore the possibility of doing additional areas (e.g., where his pain is located - wrists, knee, etc.) she did not see anything there. It still doesn't mean that it's not NB in the marrow, but since it is joint pain...I remain convinced that these areas are affected by some kind of odd rheumatoid-like problem (although I can't get any of the docs to agree with me on this). Finally, Paul is getting the fungal junk hit with a new drug; the ID doc seemed assured that what he has is treatable (some more WBCs would be helpful!!!).

The not-so-good is really nothing new. Paul remains fairly uncomfortable with pain here and there as well as upset stomach from time to time. A pain doc is coming by and thinking of more options...so that is good. Keep on praying the way you have been for these things.

Not to end on a downer...the way you all out there are walking with us through these hard days is a blessing. Those of you keeping us well-fed, the yard looking nice, sending encouraging messages, keeping Jack and Whit tended to, constant praying...all these things we are so grateful for. (-;

Crummy Day #2

Paul had a rough night last night. His stomach was very upset most of the night. Although, I think the patch has helped with his pain. Leigh and Paul are in FW tonight. The goal is to treat the fungal infection, manage pain and get radiation set up. Paul is as sick as I have ever seen him right now. It's always difficult to watch your child suffer. Nothing makes it seem worthwhile, and it is heartbreaking to behold. Faith, however, requires that you trust in Him when you cannot understand what you perceive. That's where we are. Pray as you always do. (-:

Crummy

UPDATE (9:45pm-ish): For you late night Saxon Report faithful...Paul and Leigh came on home tonight. The plan is to go up tomorrow sometime for admit with the objective to get pain managed better prior to starting some radiation to the persistent area on Paul's forehead. The rads will begin on Wednesday, and I don't know how long we'll do them. We placed a Fentenyl patch on Paul tonight; I hope it will give him some continuous pain relief. Given that the lung CT showed that the fungal area is actually larger, it appears that this bug is harder to get rid of than I anticipated. The plan on that is to switch to another drug, Caspofungan, to see if we can beat it that way. I also suspect that if we haven't kicked it in his lung then it is still bothering his GI tract as well. Please say some prayers tonight that the next few days of inpatient will help him.

P.S. Thanks to all you folks out there sending little trinkets and gifts in the mail to the guys. They are enjoying them!

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The best way to describe Paul's Sunday and today (so far) is crummy. He started feeling more pain in his arms/knee, and our meds gave some relief but also a sleepy boy. Last night he started getting an upset stomach again. He mustered enough determination to get in the car to go to FW with Leigh this morning, and they did CTs of his chest and head. When they got to the clinic around noon Paul got some Morphine so hopefully that will do some good. We are going to discuss an improvement in pain management with the Fentenyl patch - a continuously releasing narcotic in the form of a patch on the skin that lasts for a few days.

Just got off the phone with Leigh...CTs show weird stuff - at least the chest. Apparently the fungal area on his lung is not only NOT resolved but more prominent. It could be inflammation (from getting well) or it could just be unaffected by the antifungal. An ID doc is being consulted. The head CT shows smaller lumps in most areas, but the area in the front is larger (we could tell), and we are going to zap it more very soon.

Our doc there is encouraging Leigh to go ahead and admit Paul so that we can work on this pain management thing, and to get a jumpstart on radiation. I'll update later after we resolve some of this.

This is an important prayer day...

Putt-putt season officially begins

UPDATE (9pm): A big THANK YOU to the mystery family that bought our dinner tonight at the restaurant! That was such a blessing. Now we are trying hard to remember who was sitting at that table. (-:
Paul working on his putting game
The Graham's children being a poor influence on the Saxon boys



The weekend is off to a great start as you can see from the photos above. Paul won, by the way. While Paul doesn't show much interest in food his stomach pain has pretty much gone away. He is really enjoying Dr. Pepper these days which is good since we can put some of his meds in there. He is also having some pain in his arms and hands which is odd since it's symmetrical. Please pray for his appetite to return and for pain to go away... and healing. (-: