Port #2 is gone

The minor surgery went fine. Paul has been sleepy and achey since returning to his room late this afternoon. He has a temporary port line in his groin like last time which worked out fine. I'm wondering if I can get my money back on that last port and surgery. Actually, I guess BC/BS is wanting their money back. Oh well. So, we'll get another port next week sometime after Paul has recovered from this infection, and I am hoping and praying that he'll get some symptom relief starting now. Thanks for your prayers.

Confusing signs but maybe some answers

Like I said yesterday, Paul's state of misery has been and is less compared to the previous 3 or 4 days. However, his fever, pain and vomiting remains intermittent; cultures remain positive. Yesterday Paul had an ultrasound of his belly, and we assume "no news is good news" at this point. Yet, I have the feeling that the docs are thinking that the port has to come out; I'm now thinking too that the port is the source of persistent positive blood cultures. On top of that I spent some time on the phone yesterday with our VT doc. She indicated that prior to last week's chemo, Paul's urine tumor markers were elevated (compared to lower and normal after the first round of chemo). We discussed whether or not doing the last cycle of chemo was worth it if it's not having the desired effect. We'll analyze this and last week's urine markers to help make that decision. At anyrate, this finding indicates that we must find the "next thing" for Paul. There aren't a lot of rabbits left to pull out of the hat, but there are a few options. I would like you all to pray for an end to whatever is plaguing Paul. Also, pray that God will show us some treatment options for Paul, and that we'll know what to do next. We believe that God's grace is enough to handle all these hardships.

LATEST: Before I could post the blog above I spoke with our FW doc...the port is coming out today. A temp will go in (like last time), and this time I am requesting a Broviak line rather than a mediport (I'll let you web trollers do your own research) so as to cut down on infection and eliminate the need for accessing. The ultrasound didn't show anything unusual (that's a praise!). Counts are still really low, but clearing up this infection should help. I hope you all are setting aside some time to pray on our behalf. I'll post later today to give a port removal update.

P.S. I'm having a really huge I HATE CANCER day.

Less Miserable (vs. "Les Miserables")

Yes, the miserable ones are less miserable today. That seems to be a good gauge - the misery scale - by which to judge how things are going. Paul slept better last night, his vomiting/diarrhea has subsided and so has much of the fever. Maybe his body is starting to kick in some immunity. We should know counts later today as well as news on cultures. Pray for his body's immunity and that these antibiotics will clear these bugs.

Still a sick boy

When I left FW yesterday to switch off with Leigh, Paul was doing pretty well. He was watching the NASCAR race and had staved off fever for most of the day. The night, however, was a different story. Paul started throwing up and that went on most of the night. The diarrhea that he had only dealt with a little grew worse. The fevers also returned and were not reduced with Tylenol. Summary? A miserable night. This morning, while he was still throwing up, he seemed a bit better. The fever seems to be going away. I guess this is what a GI bug looks like with no immunity. Pray for him to get over this bug quickly. He's in good hands with our team in FW.

Positive blood culture...again

Paul was admitted yesterday late afternoon with fever and a low WBC count. We began the usual protocol: IV antibiotics, blood cultures, etc. The night was uneasy; Paul spiked several more fevers during the night. Tylenol helped a lot, and he has felt better most of today with no more high fevers. The first culture was positive so we are at least hanging around here for a couple of more days to see how he responds to the antibiotic. So, here we are laying around watching hours of kid's TV. Pray for Paul to get over this stuff quickly and that there won't be any port infection issues.

Fever=FW

Paul started running a low grade fever last night, but spiked a pretty good one this morning. I am awaiting word from FW, but with his compromised immunity the way it is now, I know the answer..."come on up." So, off we go. I'll post more later. Say those prayers for the boy.

Full tanks

Paul and Leigh had a long day in the clinic, but all-in-all, it wasn't too bad. Paul needed platelets and was borderline for blood, but "Dr. Leigh" ordered a unit, and he got those too. It was all part of a plan to avoid going back for an appt. on Monday (which is a school holiday). Anyhow, Paul's tanks are full for now, even though his WBCs are very low; so, we'll go into "social isolation" mode for a week until he recovers. There are a lot of bugs floating around Waco these days... any one of which is a ticket to the hospital if Paul gets sick during his low immunity period.

One thing to pray for, Paul's lower back has been bothering him the last day or so. It seems to be in the area where the disease was in December. I'm not sure what to make of it yet. He was complaining that it hurt because he had to sit so much at school (he doesn't have much padding back there). Please pray that this pain will pass, like the arm pain last week, and that he will continue to do well. We know the Lord controls all these things, and we depend on our prayers on our behalf.

New Essay

Paul had a terrific day at school yesterday and was ready for more this morning. What a nice blessing. Thanks for keeping him in your prayers. (-:

See Leigh's newest essay up top, right.

Music to our ears...

This has been one of the best weekends we have had in a long while. First, Paul is doing so well, even after a week of IV chemo. He never lost his appetite, never felt bad, etc. In fact, he is eating more than I have ever seen him eat. Second, he seems to be getting around better. I thinking weaning him off the heavy steriod is helping him; he's just about off it. For the first time in weeks Paul was up with his brothers on Sat. and Sunday morning playing in their room before we awoke. Their laughter was music to our ears.

We went to church and then eagerly awaited the Daytona 500 race. This week should be a pretty normal one. It was wonderful to drop off Jack and Paul at school today. We hope Paul can at least go through Wednesday before a clinic visit on Th and WBCs drop. We are thankful for some normal life and that Paul is doing well. Don't stop praying! (-:

A long day 5 comes to an end

Paul and Leigh were on time arriving in the clinic and Paul's chemo went fine as it has all week. We are very thankful for that. Paul had a CBC today, and he ended up being borderline on platelets but real low on blood. So, it added some time to get both platelets and blood today, but hopefully the benefit is that he won't need anything until next week's clinic follow-up (Thursday). We'll have him in school the beginning of the week; he asks about going to school now everyday. We are looking forward to some good relaxation time this weekend, and of course...the Daytona 500 race, the real SuperBowl Sunday.

Once again, I have to say thanks to all the helpers and prayers out there after a week like this one. Kid-care & school pickups, "meals-on-wheels," presents/cards in the mail, at work and left on the front porch, major prayer support, etc., etc.,...you know who you are, and we LOVE you! We have much to be thankful for, and sometimes in all the busyness, we lose sight of that truth. (-:

Another day done

I took Paul to FW today, and we had a nice day together. We were there getting chemo and a check-up for about 4 hours and then we were on our way. Paul ate very well today, and he has gained and maintained some decent weight. As far as tolerating the chemo...Paul is doing well. He may be feeling it some, but he certainly isn't dealing with nausea. Paul did start complaining about his arm hurting this evening. At first it seemed as though he was pointing to an area where he had an arm poke recently, but that doesn't seem reasonable since it was last week. And, his pain may be further up his arm. He just says it hurts. So, we'll keep an eye on this, and pray that it doesn't persist or worsen. We have gotten him off of pain meds, and I don't want to have to restart them. Please pray that Paul is responding to these drugs.

Mmmm...Chocolate

Paul and Leigh got into the clinic when the doors opened this morning in order to get out quickly so that Paul could get back to Waco and join his class for the rest of the day. He was really looking forward to being there for the Valentine's Day party. It all worked out as planned, and he had a great time at school. Whit and Jack also enjoyed getting cards and treats from their buddies. I don't know how I'm going to get all this chocolate eaten tonight. (-:

Paul continues to tolerate the chemo with no problems, and we pray that that continues for the last two days. I know you are praying too.

Almost V-day!

Paul was in one of the best moods in a long while yesterday. He worked on Valentine's cards all day for his 20+ classmates. He really wanted to go to school today, so we devised a way for him to get in and out as quickly as possible tomorrow and then get back home in time to go to school for a while in the afternoon. He has tolerated these first two days of chemo well. His appetite may be sliding a bit, but that is to be expected. I know you all are praying each day for him. Please continue to pray that the synergy of all these various therapies are having a potent affect.

Green light on chemo

Cutting it close...Paul was approved to get going on the chemo today. This is good news since it means we stay in the VT study, and we can continue to see how the synergy of these therapies work on the tumor. Paul's culture from last Th never became negative, so perhaps we have dodged that bullet for now. Paul is doing as good as I have seen him in a long time. He was a bit disappointed when he realized that he wouldn't be going to school for a while, but at least when he does go back he'll recall how fun it was. It's a busy week of treatment. Please pray that all goes well.

Some Spontaneity

In a rare event of spontaneity, Jack, Paul and I drove over to East TX after school on Friday and spent the night with Nana and Grandpa. We had a nice time lazing around on Saturday and then came back to Waco Saturday evening. Whit got some good one-on-one "mommy time." Then, this morning we all went to church and then to Fuddrucker's for lunch (of course!).

Paul is doing great. He enjoyed school on Th and Friday last week, and we are so glad he got to go and reconnect with his class. So far Paul's blood cultures have not turned out positive for any bugs. Things look great for chemo this week since Paul is not running fever or getting sick in any way. His appetite is extraordinary. He is either eating, talking about eating, or finishing eating. I've never seen him eat so much. These Megace pills are really working.

It's going to be a normally hectic week around here, and we thank you all for your prayers and all the ways you tangibly help us.

School again today

Whit, in the Charlotte airport, standing next to the greatest car of all time

Leigh is eating lunch with Paul today at school. She did the same thing yesterday, and it is so fun to see him getting to go to school. He's never been one to miss going, but since his teacher is making sure that he gets the help he needs moving around, doing lots of art work as well as fun learning activities, he seems excited about going (way to go Mrs Chapman!!). He did great yesterday, and was ready for more today.

So far he has shown no obvious signs of an infection. We don't have yesterday's culture back, but if it turns out positive at some point it must be slow-growing. No sign of fever either. Anyhow, we are enjoying our Paul, and we have a great weekend planned. We know you are keeping us in your prayers. (-:

P.S. I will soon have an announcement regarding the sale and auctioning of art for cancer research; stay tuned.

Good news, bad news

A little bit of anxiety entered the equation last night when one of our docs in FW phoned to inform us that Paul's blood culture had come back positive (it takes 72 hours sometimes to get these). Since the same bug was there last week, and then gone at discharge (Friday), her thought was that it might be in his port. She mentioned getting a new port. Well...you can imagine how the news settled. First, his port was just replaced less than 4 months ago because of this; second, this could mess up his starting chemo on Monday which means he is off the VT study (you get a 2-week cushion to get off sched.). That's the bad news. The good news...first, Paul is feeling great. In fact, he went to church last night and school today. As long as no fever comes, and he doesn't "get sick" we should be good to go on Monday since his counts are all good and rising. The plan for now is to collect another blood culture today locally. If this is a persistent bug then we'll have to do something with the port at some point. As usual we trust you all to pray for these things. For now, it brings us great joy to see Paul get to go to school, watch him get after his food, play, and returning to good ol' Paul.

So long radiation!

Paul has wrapped up 20 something days of radiation and all without sedation! We're planning a little party for him at home. His clinic appt. went fine. He was in and out after a lab draw (which came back fine). He seems to have reached a point of impatience with the clinic visits, etc. Who could blame him after this past few weeks. Anyhow, we are thankful for a few days of no trips to FW! I know you all never cease for pray for him.

"ROM8-38-39"

One of the interesting things that Dr. Sholler does in her VT lab is that she takes out some extra "juice" when she takes the bonemarrow aspirate and then over a period of weeks she separates the NB cells from the normal stuff. She then grows these NB tumor cells letting them divide and do what tumor cells do. Then, the best part, she tries different tumor killing concoctions on them to see what destroys the cells the best. These tumor cells are called "cell-lines," and each child's tumor line is unique since each child has unique DNA. In theory, if you can find something that can kill it in the lab, you can assume it might work in the body. There is a lot of distance between lab and body, but, still...this is an exciting way to see what works in a child's body to kill tumor. Paul's cell-line is still in the growth stage, but sometime soon I hope Sholler can start experimenting on it. When I was there, she asked me what I would like to "name" the cell-line since labs typically refer to the cell-line they are experimenting with in technical reports and medical publications. After thinking about it a long time I finally arrived at the name I put in the title of this post. Romans 8:38-39 have been important verses for us during this journey, and it communicates our heart on how this all will inevitably turn out. It's always a win in Him.

I took Paul up today, and while I thought we would begin chemo today...I was wrong. Our doc in FW is still wanting Paul's bonemarrow to recover a bit, and get off radiation. So, I guess this is bonus week #2. Please pray that we don't lose any ground, and that this turns out to be a great week of recovery, weight-gain, and perhaps even some school.

Relaxing at home

You know it's a relaxing day when someone in the family is still wearing pajamas while another member of the family is fixing dinner (e.g., Jack and Mom, respectively). We all slept a bit later than usual, and since then we have sat around, played, watched a lot of cartoons and Animal Planet, snacked and relaxed. Paul is doing well. His energy level is low, but that's probably due to our continuation of the steriod tapering. Paul still moves around slowly, and needs to build back some leg strength, but besides that he is not in any pain. That's amazing considering how he was before we started on the VT study.

The plan for next week is to wrap up radiation and begin the second cycle of chemo in FW clinic. It won't be easy, but we seem to be getting some good gains out of what we are doing, so it will be worth it if that continues.

This past week was very hectic with Paul getting hospitalized. About the same time Whit came down with some yucky GI bug that lasted a couple of days (and caused Wal-Mart to bring out the mop...oops!), and to top it all off I had a busy work week (yes, professors do work hard a least a few weeks out of the year). Thank you all for helping with the kids, school pick-ups, meal deliveries, house cleaning, emails, phone calls, etc. It's assuring to know that help is just a phone call away. (-:

A nice surprise

Leigh just called to give some great news. First, Paul's cultures from 24 hours ago are now negative. Second, they are getting discharged today! There is still a good bit of stuff to do before they leave, but it looks like a good weekend with everyone home afterall. (-:

I Despise Positive Cultures

But...that's what the report says this morning about the blood test on Paul from yesterday. I'm hoping that it's a false positive which isn't uncommon, but at the very least this finding has Paul staying hospitalized longer as more cultures get done, and getting antibiotics. The good news is that he is feeling really good. When I talked to Leigh, they had just returned from radiation, and Paul was anxiously awaiting his Sonic food delivery (thanks Nicole!). If after the doc comes by there is anything new to report, I'll update. Pray on...