Here We Go -- Again

I thought I'd posted this September 28th

2007-11-20T11:28:00.001-05:00

Josh went to a new pulmonary specialist (Dr. Doshi) at Beaumont. Josh thought he was great and he got a good and thorough evaluation. There is definitely some scarring on his lungs and Dr. D wanted a C-T to make sure that there was nothing active there. Josh went and had that done September 27th. The bottom line on his lungs is that we can expect it not to get any better, but that it shouldn't get any worse. Symptomatically, it will be very like being asthmatic. He had Josh increase the dose on his Advair inhaler to two puffs twice a day (up from one puff each time) and had him stop taking the Singulair. He also emphasized that due to his continuance on the immune suppressants (Tacrolimus), upper respiratory infections could be deadly and he’ll have to really guard against them.

Josh also had a follow-up with Dr. Fortin (the ankle guy) and he thought the ankle looks great; good take of the graft, great mobility. He’s not feeling any pain or discomfort. He can overdo the ankle, but he’s pretty good about knowing when to take a break. I can't remember the last time he came home and iced it. He does limp a little when it's tired or sore. He doesn't need to come back for another check-up on the ankle for a year unless something happens. That was a good boost for his morale, as the news from pulmonary sort of depressed him.

He saw the Dr. Stec (his ophthalmologist) this week (big week for check-ups, huh) and she was also very happy. The white spots they’d been concerned about on his eyes have all cleared up. The Restasis appears to be working so he’s to continue with two drops at bedtime. His cataracts didn't appear any worse, so we're still just keeping an eye on those. She said he was borderline on needing glasses. He could have them if he wanted them, but didn't need them if he wasn't having any trouble reading and he wouldn't need them for driving, etc.

His midterm progress reports are coming out for us on Monday. He got his grades from his teachers yesterday and he’s got solid B's. His AP history class is a C, but that counts as a 3.0 on his GPA (B is 4.0 and A is 5.0 on the AP classes). He did get a B on his last paper (they do one a week) and he's been getting C's on those, so it appears he may have figured her out. She's been good for his writing.

We're pretty happy with how he's doing. And he's pretty happy and enjoying school.

I agree

2007-07-30T17:56:00.001-04:00

It is time for an update. I'll try to post at least monthly, but right now things are pretty static. (Hooray)

No news does mean things are going well enough. They are certainly busy. Anyway, here's how things stand.

Sophomore year is finished (as of his last make-up exam in Spanish last week). One of the penalties for getting so far behind is having to catch up, but he's done. Hopefully next year he'll stay a lot healthier.

He's been healthy since Easter. He's still fighting to put on weight, but is at least holding his own and gaining a little. He had his annual pulmonary function test last month. It hasn't improved, but it's no worse so the Advair inhaler and Singulair seem to be doing their job.

He's been going to Physical Therapy three days a week so he's getting some exercise that way and his energy levels are up. They keep a close monitor on his heart rate at PT, as that's still pretty rapid and something they want to keep an eye on. The lungs and the heart are a couple of late affects we'll have to monitor for life. Of course he's taking some medications that don't help the heart rate.

His ankle is doing great. He can overdo it, but it takes a bit. It's not stopping him from doing normal activities. Of course sports are out of the picture and that's unfortunate.

On his last visit to the transplant clinic they started reducing his Tacrolimus with the intent of tapering him off completely. This is the third time they've tried to get him off the immune suppressants and each time he's had graft versus host (GVHD) and had to go back on Tacro and steroids. This is probably the last time they'll try to get him off Tacro. If he doesn't make it this time he'll probably be on immune suppressants for life. He's reduced the twice a day dose to once a day for the last two months and is looking good. If there's any one thing to pray for this is it. The main reason he missed so much school last year is that he just catches every little bug that goes around and they hit him harder and it takes longer and is harder for him to fight them off.

That's about it. We really enjoyed our trip to New Mexico in April and he's got a week of camp August 12-18 and we're all taking a few days vacation in Traverse City before school starts. Here's hoping he has a strong, healthy junior year.

Happy Mother's Day

2007-05-13T10:09:00.000-04:00

Happy Mother's Day to all the mothers out there; especially my long-suffering wife Bonnie and my everloving sister Cathey.

He is risen

2007-04-08T11:56:00.001-04:00

Easter has always been my favorite holiday. It is truly Christian without the commercial trappings which distract us from the true meaning of Christmas. It's become much more meaningful for me over the last five years as Easter has marked a couple of milestones in Josh's recovery.

Easter in 2002 marked the five months from his diagnosis and he was finally home, in remission and recovering his strength. Easter Sunday marked his triumphant return to church. Our pastor at the time was a big Tigers fan, but he pulled out a Yankees cap for Josh and put it on, told Josh he was everyone's hero then led the congregation in a standing ovation. It was a pretty special Easter.

Today is a special Easter, too. After the last few weeks of nagging fevers and not feeling well, the doctors cleared him at the last minute (Wednesday afternoon) to fly out to New Mexico with me on Thursday for a visit with my sister. He got up Thursday morning feeling better than he had in weeks and, although he still had a low-grade fever, we headed to the airport. The flight was bumpy, but the departure from Detroit and the connection in Dallas were smooth and it was nice to arrive in a sunny, mid-70s Albuquerque aftere leaving a 26 degree Detroit with blustery snow.

From Thursday night on he's had no fever and is feeling good. Getting up and out and about has been great for his appetite. He's eating well and lots. We're both really enjoying the southwest cuisine. He's not restricting his diet at all. It's obvious any bug that might have tried to linger has been cleared out of his system or been finished off with the green chilis.

Friday morning, we got up early and drove up to Santa Fe where we packed up my aunt and moved her from her assisted living in Santa Fe into a new assisted living in Albuquerque. Although the care in Santa Fe has been good, they've come under new management and were scaling back in lots of areas. This new arrangement is so much better in so many ways. We really liked the layout here and the level of involvment from the staff. Although Aunt Marj has alzheimer's, she made the adjustment very well and the move was uneventful. The best part is that she's now just ten minutes from Cathey's house and that will make visits a lot easier on her and more frequent for Aunt Marj. We checked in on her yesterday and the staff said she's been quite content and ate well. We'll be able to stop in and visit daily while we're here.

Josh is stirring now (after being prodded) and we'll be able to spend the rest of the week doing touristy things. The weather was chilly and blustery yesterday, but it's nicer today and the forecast looks good. Josh wants to re-visit the Albuquerque Aquarium and the Natural History Museum and we'll decide what else to do depending on the weather. Today, we'll just celebrate life. He is risen!

Catching up

2007-03-21T15:33:00.001-04:00

Thanks to everybody who's asked for updates. I'm sorry it's been so long. We've been busy, but I meant to update a couple of weeks ago. Instead Josh ended up in the hosptial and I was distracted.

First, Josh has been doing well. But Friday, March 9th, he woke up with a 103 temp and the BMT clinic admitted him downtown. As always, Josh was stumping everybody. They started him on antibiotics, kept him hydrated and ran cultures. Nothing came back and the antibiotics didn't help, so we guess it was viral. The fever broke on Wednesday (day 6) and they sent him home on Thursday.

The real aggravation for him was that everything was compounded with a severe case of conjunctivitis (pink eye). Combine with his severe dry eye syndrome, it was extremely painful for him and he spent the week in the hospital unable to open his eyes. A platoon of ophthalmologists were following it while he was hospitalized, but weren't much help. We went to see his regular ophthalmologist and she cleared out some mucous which was starting to adhere to the surface of the eye and cause some scarring and put him on some drops to finish clearing that up. They are getting better and he's been able to do some reading and school work and watch a little TV and play some video games to pass the time.

Although the fever has broken, ophthalmology has declared him still extremely contagious and unfit for school, so he's missing his second consecutive week now. He is definitely on the mend, though.

His health, otherwise, has been good the past few months. He is catching every cold and bug that passes through his school and has missed quite a bit, but is keeping up for the most part. It's been a sick season with lots of kids missing school, so his new immune system is getting re-imprinted by all this.

The ankle is doing great. The graft appears to be doing well, although we still won't know for a while. All indications seem to point to success, though. He came off the crutches after two months and was walking in just a boot for a few weeks (assisted by crutches at school when he was toting that heavy book bag). He began moving around at home with nothing on it and now (at the 3 month mark) he's just wearing shoes and moving better and better. Best of all, he doesn't have any chronic pain. He'll probably use the crutches at school for a while when he's carrying a lot of weight around, at least I hope he does. He goes back in about 10 days for his next exam and we'll see what the doctor has to say about it.

Getting out tomorrow (edited)

2006-12-15T21:09:00.001-05:00

At least that's the plan. Fever seemed to have broken about 4 a.m. this morning and he's been able to keep down some light meals this afternoon.

He's gotten a couple more doses of Moxifloxacin and Zosyn, but they've determined this was Rotavirus and just has to run it's course, which it now appears to have done - for the most par. He's certainly feeling better because he's bored and is being a real pain wanting to get out of there.

I'm heading back in to spend the night. But we should spring him tomorrow.

Back to the hospital

2006-12-14T14:05:00.001-05:00

Just when you think Josh is better, he goes back to school and comes home with a fever and vomiting. When the fever spiked up to 104.3 last night we decided to head to the ER. They admitted him about 11 p.m. last night. They've taken blood cultures, swabbed his sinuses and x-rayed his chest. So far, he's positive for RSV (a upper respiratory infection) and they thought they saw a spot on one of his lungs and took more x-rays. So, possibly pneumonia.

They started him on Vanco in the ER last night. Today the changed that to a couple of more broad-spectrum antibiotics, Cipro and an antibiotic to be named later. Labored breathing but he's been resting all morning. He's pretty much out of things right now. The fever's still pretty high, but responding to Tylenol.

Three weeks post-surgery

2006-12-07T18:55:00.001-05:00

Josh has cut himself way back on the Vicodin and is managing without much pain. He did pick up a bug and has been running a fever and not feeling very well this week. We went to the surgeon on Tuesday and they cut off his cast and checked to make sure there was no infection. There wasn't, so they re-casted it and he went to the BMT clinic and they started him on Zythromycin for five days. He's been home all week, but is feeling better and is going back to school tomorrow.

He went back to the surgeon today for his regular checkup and they pulled his stitches and put him back in a cast (not split on the side this time) and want to see him in a month. He's been choosing blue casts but opted for a red on this time.

Dressing change and a cast

2006-11-21T21:48:00.001-05:00

Took Josh to the doctor to check out his handiwork today. I was impressed. The long incision, about 8-10 inches from just above the toes extending about 6 inches up the front of the leg, was really clean and closed up so neat I can't imagine it leaving much of a scar. There were two more small incisions above that and a couple more on the side of the foot they used to work through. Most of the swelling and bruising was gone and the x-rays looked really good, so they went ahead and put it in a cast. Royal blue.

His next checkup is in two weeks. The plan is to cut the cast off and pull out his stitches then re-cast it. No weight on the foot for three months to make sure there is no shearing of the graft to give it the best chance to engraft.

He's getting around on his crutches pretty well and we're getting a wheel chair for him to use at school. We'll leave it at school and he'll be able to use it to keep his leg elevated and get around without wearing himself out or hurting his good leg like he did the last time he was on crutches.

He took a nap after he got home and when he woke up the pain pump was empty so he pulled the catheter out of his leg and tossed it out. He's still managing the pain fine without overusing the Vicodin.

Surgery successful; heading home

2006-11-19T10:29:00.001-05:00

It was after 5 p.m. Thursday when Bonnie called to say we'd finallly gotten the surgical clearance from the pulmonologist. Josh and I got up at 4:40 a.m. Friday morning and went to Beaumont and checked in. Bonnie swung by as they were sedating him then headed off to court and I stayed in the waiting room.

They said the surgery would be three to four hours. It started at 8:20 and at 11:10 the doctor came out to talk to us. He was very happy with the surgery. He'd been concerned from the x-rays and scans that there might not be much vascularity in the diseased bone to help the new bone engraft. Once he got in, he cleaned up the diseased area of the talus and there was still a large area of bone with good vascularity that will really benefit the graft. There is just one small area of dead bone left in one corner.

The operation consisted of laying open the ankle joint then place an extendor in there. With the ankle extended, they cleaned up the diseased area of the top the talus where the tibia rests. They then secured a small section of the cadaver bone to the top of the talus with a couple of small screws, released the extendor and closed it up. It's secured with a molded splint, packed with cotton and wrapped in an ace bandage. New nickname is 'Big Foot.'

One thing Dr. F noted during the operation was that the front of the talus facing the foot has more necrosis than had been indicated on all his scans and that's an area that can't be corrected. He doesn't think it's an area that will bother him as much and he won't have much pain from that.

Technology saves the pain. During the operation they inserted a small catheter into the leg just above the knee and hooked it to a pump which continually pushes a local anasthetic creating a pain block for his leg. It's worked great. As his leg woke up and feeling came back, he's begun to supplement it with Vicodin. He's doing great and we're packing up now to go home.

Five Years

2006-11-12T20:18:00.003-05:00

Another anniversary. It was November 9, 2001 that I took Josh to the pediatrician. He was admitted to the hospital that afternoon. That was a Friday. Monday he had a bone marrow aspiration that confirmed it was leukemia and it was well advanced, 80-90% blasts in his marrow. It was a long, rough weekend. I think I was in shock, certainly in denial. I remember the details in vivid clarity but don't feel it at all. It changed our lives, not necessarily all for the worse. I remember the five year survival rate for his diagnosis was 40%. Well, here we are.

And at the end of this week Josh will be two years post-transplant, another significant milestone. Hopefully we'll be marking that milestone with another by transplanting a cadaver bone into his ankle. Last Friday morning we got a call telling us that the bone he was getting hadn't passed all it's tests and the surgery was off. Before we could tell him we got another call saying they had another bone that matched and had passed all tests. We're set as long as he gets cleared for surgery on Wednesday.

Wednesday he has to get a cardio echo and take a pulmonary function test. Those will determine if his heart and pulmonary function are strong enough for a four-hour surgery with general anesthesia. He is absolutely ready to do this and I'd love for him to have a successful surgery and regain some function in that ankle. I know the chronic pain wears on him. It will be a rough period for him while he recovers.

I've learned that these things will all happen in God's time, not ours. But, it's been five years...and here we are. And what a blessing he is to us.

Opportunity knocks...

2006-10-27T15:41:00.001-04:00

...and we answer. We got a call yesterday and the donor list had a cadaver match for Josh to get the ankle graft on his talus. The good folks at the BMT clinic determined that since his steroids dosage is now reduced to the point he's almost off of it, he could go ahead with the surgery. The surgery is scheduled for November 17th. Since that's a Friday and the following week is Thanksgiving, that will help to minimize the amount of school he'll miss.

He's been so anxious to do this in hopes of a more normal life, I hope all goes well. There are the usual risks of infection along with the chance that the new bone may not engraft. He'll be in a full cast and on crutches for three months.

Josh continues to catch every bug that comes along, and there have been a lot of them this fall. They are debating at the BMT clinic whether or not to keep him on immune suppressants for life or to try one more time to wean him off them. Every time he's gotten close he's had a recurrence of GVHD. The upset for now is that being immune suppressed could help the new talus to engraft by reducing the chance of rejection.

Where do I start?

2006-10-06T15:02:00.001-04:00

Where I left off, I suppose. The last couple of weeks were a little rough for him. Josh was still feeling a little rough around the edges, but got back to school after missing most of the week before. It was homecoming week and he thoroughly enjoyed it. He was pretty tired, but kept dragging himself off to the different activities, helped set up and was obviously enjoying life.

Saturday night Josh went to the homecoming dance and lasted about 15 minutes. He'd had so much fun that week with the homecoming activities and we were so happy watching him being involved and having so much fun, but he just can't do any activity like that. He was on the dance floor doing the sprinkler (don’t ask) and his ankle gave out. His friends got him some ice and he packed it around his ankle. They helped him to his car and he drove home.

He stayed home the following Monday and I took him to the doctor. They took x-rays which showed no change, so he’s just got to use crutches and keep weight off it for a week or so. We were afraid it had collapsed since he was in so much pain, but it's okay, so he's still on track for a January transplant as long as he gets off the steroids and we find a match.

The ankle is better this week. Bonnie dropped him at school a couple of days this week so he wouldn't have to drive on it. He drove the last couple of days, though. On his way home yesterday he had an accident. He called from the scene and was really shook up. His car is gone, it was totaled. He's okay. He was coming onto a freeway from an access ramp with a pretty sharp turn and he hit some gravel on the ramp and skidded. He probably overcorrected since he said he started to fishtail and he hit a car in the traffic lane knocking it into another car in the lane beside it. He was cited for not safe speed limit - too fast. We'll have to see the results of the ticket, etc. but insurance will go through the roof now. One person in one of the other cars was taken off in an ambulance and we were concerned about them, but heard today they didn't think it was too serious.

Our saga. To be continued...

Catching up -- again

2006-09-21T15:09:00.000-04:00

Josh got back into school after Labor Day. I'm sure he was glad it was a short week. By the end of the first week he'd adjusted his bedtime on his own. Those summer nights where he'd read until midnight just didn't coincide with getting up at 6:15 a.m. Now we see him mosey off to bed a little before 10 pm.. and if there's something on TV he wants to see, he records it for the weekend.

He's been great about coming home and getting his homework done; he manages his time very well. He enjoys the autonomy he has with his own wheels and loves being able to drive himself to school. It's 20 miles each way, so he's getting lots of good on-the-road experience. He's on the road by 7 a.m. each morning, so he's getting it in rush hour traffic.

He's felt a little out of sorts the last couple of weeks. We thought he had a bug, then a cold, now we're back to the bug hypothesis. The BMT clinic said there's a three-week virus making the rounds. He's missed school all this week and has developed a cough. No fever, though, so we're just monitoring it and he's resting at home and getting his homework via email.

Labor Day weekend post

2006-09-01T15:07:00.000-04:00

Traverse City was a relaxing long weekend for all of us. We all laid around, read and relaxed. Monday we rented Ski-doos and went out on the bay, then Tuesday Josh and I went para-sailing. Wednesday, we drove home.

Last Thursday, Josh drove out to his high school to help run freshman orientation, then Monday school started with a half day. Josh has been driving his car to school and seems to be loving it. Homework hasn't been heavy yet and his course work will be a much heavier load than last year. Still, he comes home and gets right on the homework and has really been happy.

Wednesday, he had his checkup at the BMT clinic. They reduced his Medrol from 8 mg every other day down to 4 mg every other day. This is the fastest they've ever taken him off steroids so we’re supposed to monitor for any muscle cramping, tightness of skin, etc. then they'll boost it back up a little if necessary.

His ankle surgery is tentatively scheduled for Jan. 12 and he's on the list for a replacement talus. That will, of course, depend on oncology giving clearance for surgery and them finding a cadaver match for size, blood type, etc. He's ready. If it proceeds on schedule, he won't be driving second semester; he'll be in a cast for 12 weeks. They want it totally immobilized while it heals. Well worth it in the long run.

Picked up from camp -- still up north

2006-08-19T19:56:00.000-04:00

Bonnie and I drove up to Traverse City last night and stayed at the Marriott. That way, the rough drive was behind us and we just had a pleasant, scenic drive over to pick Josh up at camp this morning. We're back in Traverse City for the next few days. We'll spend one more night here at the Marriott (free, using Bonnie's acquired Marriott Rewards points). Tomorrow through Wednesday we'll be staying at Bonnie's mom's time share on the Traverse Bay.

Josh looks good. He hasn't lost any weight and the puffiness in his face caused by the steroids is going down as his dosage continues to be tapering down. He said he was tired from not sleeping well on some rather rough mattresses at camp. He didn't do a lot of activities that would stress his ankle, but still had a pretty good time. His knee is still a little sore, but he says it's a lot better, though his ankle is bothering him. He's moving around pretty well, though. He's certainly in a good mood, not anywhere near as tired as when he got back from Montana.

We'll get back home Wednesday night. Thursday he has a student council meeting at school, then school starts the following Monday. Summer isn't over for a while yet, but summer vacation is wrapping up. It's still pretty nice here, but there was a hint of fall in the air today and the leaves are starting to show some color.

Off to camp--again

2006-08-14T15:42:00.000-04:00

We drove up to Camp Quality yesterday and dropped Josh off. He's got two weeks before school starts and about 10 days of that will be up north.

His knee was feeling better after a week of laying around at home and he was ready to go again. It still bothered him some, but it was better and I gave him a knee brace to wear while he's at camp. I hope he remembers to wear it and that he won't over-do it.

Next Saturday Bonnie and I will drive up to pick him up then the three of us will drive up to Traverse City for a mini-vacation, coming home on Wednesday. He'll have a couple of days to rest up before school starts.

He went in to the clinic last week and had another good checkup and they're continuing to reduce his steroids (Medrol). The GVHD in the lungs seems to be clearing up well and, aside from the ankle, he's feeling well. He crumbles about summer being almost over and school starting, but I think he's pretty excited about getting back into the swing of things.

And current

2006-08-05T21:40:00.000-04:00

Friday evening, Bonnie picked Josh up from the airport. It was a busy week while he was gone, but we still missed him something awful.

It sounds like he had a pretty good time. He came back on crutches because he overdid it on his ankle the first three days, then was on crutches the rest of the week. He said he was still able to enjoy it, though. Now the knee on his good leg is bothering him from the impact and his arms are achy from using the crutches. It looks like he ate pretty good last week. Today was a lazy day for him. He slept late and is getting back on our time zone.

He’s got an appointment at the BMT clinic on Wednesday for a check up, then Sunday he’s off to another camp up in northern Michigan.

Looking back

2006-08-05T21:31:00.000-04:00

It was two years ago when I started this blog in August, 2004. I was browsing through the past couple of Augusts and was stunned at how much progress Josh has made in the past two years.

Two years ago, in August, 2004, we had just gotten back the results of his bone marrow aspiration confirming he did have leukemia for the third time. The autologous bone marrow transplant he’d had in February, ’04 hadn’t been able to hold the line. We were devastated. In addition to the blasts showing in his marrow, he also had a tumor on top of his scalp which was leukemia and would require direct radiation therapy in addition to another round of chemo; new territory for us. It was a rough period, but he survived it and, by the grace of God, he finally came up with a match for an allogeneic bone marrow transplant, something we’d all but given up hope for after two years. So, thanks again, Doug, for your wonderful gift. We think of you all the time.

In August, ’05, he was in the hospital getting a battery of tests trying to determine what was causing his unexplained fevers and headaches. He was still in a much weakened state and recovering from his second transplant. He’d missed two years of school and we were afraid he wasn’t going to get to start his freshman year. Ultimately he was able to start on time, first with just half-days, then increasing as his strength and endurance developed. He was going full days be Thanksgiving.

Looking at him today it astounds me that he’s endured so much. His resilience is amazing. It makes me so happy to see him so buoyant and cheerful now.

Another overdue update

2006-07-31T12:28:00.000-04:00

Josh went in to the BMT clinic in the morning June 29th, and then saw the surgeon for a consult on the ankle in the afternoon.

His checkup on June 29th was generally good. They upped his Tacrolimus and cut out his fresh fruits and veggies while he's immune-suppressed again. Doctors say they expect they'll 'maybe' start to taper the steroids (Medrol) in a couple of weeks, dependent on his next pulmonary function test, but expect him to stay on steroids for 6-9 months.

His surgery consult was interesting. They consider him a 'possibly' good candidate for the cadaver bone graft, but want to do new C-T and MRI of the ankle first. Of course, surgery will have to wait until after BMT Oncology clears him, probably after he's off immune-suppressants. The surgeon did say that if the ankle collapses there's an alternative surgery to the total fusion that has showed to be promising. It fuses the ankle, but somehow leaves some flexibility there. All of this is long-term, of course. We'd thought (hoped) we might be able to fit it in over Christmas break so he wouldn't miss any more school.

Our goal right now is just to keep him healthy while he's on the Tacrolimus. and Medrol.

He had/has a little low grade fever we're monitoring. He’s getting active again and starting to enjoy a lot more. We went to see the Cardinals / Tigers game last Saturday. We had great seats and it was a great game and we all had a great time.

Josh has been great about exercising, but says he can sure feel the effects of the steroids now ... achy and weak. I’m glad he's hitting the gym hard and working to combat that. He’s been going to the gym at the YMCA three days a week. He logs in to the computer at each machine and it records his workout, then we can track his progress on line, pulling reports off each month. His school is going to try to use that to get him credit for a semester of phys. ed. since his ankle has been keeping him out of gym class.

The BMT doctors weren’t saying no to the camp in Montana, but were saying probably not. But his next checkup on the thirteenth was pretty good. The PFT will showed a lot of improvement and the lungs sounded better. He wasn’t happy about missing the trip out to New Mexico with me.

His checkup on July 26th was good and he got his final clearance for camp in Montana. I took him to the airport Friday morning (the 28th) and he called that night to report he got there okay and sounded excited and happy. He was particularly glad that they had a weight room and he thought they’d let him use it. We pick him back up Friday evening.

Does anyone still read this thing?

2006-06-16T15:55:00.000-04:00

We seem to be getting an education in late effects.

We took Josh for a second opinion with a pediatric oncology orthopedic surgeon regarding the avascular necrosis of his ankle. He is just having too much pain. I think this is something she probably has a lot more experience with and the doctor who has been watching this develop is just spread too thin. He’s running two practices in three locations and you can just never get in to see him. The new doctor offered some hope. He’s got a referral to another surgeon who specializes in some new treatments where they surgically implant some cartilage from a cadaver. It won’t fix the necrosis, but would provide some padding that would give him some relief from the pain.

Josh also saw the folks that made his brace and they will take another mold of his ankle and fit another brace if the extra padding they put in his current brace doesn’t help.

Josh has also been having shortness of breath and fatigue. He took a pulmonary function test last week which showed about a 25 % loss of lung function from a year ago. They initially thought it was basically long-term damage from the chemo and transplant but he also had a cat scan of his lungs that showed us it’s GVHD in the lungs. He’s been started on Advair, a steroid inhaler twice a day and has an Albuterol inhaler he can use if he’s having any pulmonary distress.

He also started back on steroid therapy, 16 mg of Medrol once daily. It’s a shame, he was only off the steroids for about 6 weeks.

It looks like the planned vacation to New Mexico is canceled. Josh’s doctor is concerned about the dramatic change in elevation would put him into pulmonary distress. As it is, he's gasping for air when he does much here. He has started going to the YMCA here and is serious about working out, so hopefully the steroids won’t have as adverse effect on his conditioning as they have in the past when he was so much weaker.

Through it all, Josh just continues to amaze me. I’m guessing he was ready to get back in to school. He missed all of 6th grade and we had him pick up with 6th again after missing that first year. Then he missed all of 7th and 8th grade, just keeping up with tutoring and home schooling. So, he just finished his freshman year in high school and just did great. He got a B+ in art and aced everything else. He takes all the little setbacks pretty much in stride and is moving forward.

Here's what I know

2006-03-28T15:07:00.000-05:00

Josh finished Phase II of Driver's Ed. He only needs about five more hours of logged driving and is getting anxious to take his test.

Ophthalmology put some silicone beads in his eyes to block his tear ducts. That's made his eyes much better. He's still using drops, but nowhere near as many. His eyes were too dry and the tear ducts are a drain, so blocking them keeps the moisture in, just the opposite of what I’d have expected.

I spoke too soon. It appears the beads fell out and his eyes have been bothering him again the last few days. We moved his Ophthalmology appointment to next Friday and she’ll block them again. She'd warned us that sometimes they stay in forever, sometimes they fall out.

Oncology has reduced his Medrol to 2 mg every other day. We're supposed to watch him on the off days to see if he seems to tire. The adrenal gland gets lazy when you’re on steroids and forgets to work sometimes, so if he seems sluggish they'll test him for that.

He’s not gaining any weight, but he’s eating well and drinking two to three Ensure Plus each day.

His growth hormone test determined he’s making enough of the hormone on his own, so he won’t be getting any shots. At least not for that. He’s getting plenty of others. He got his second round of childhood immunizations at his March 17th checkup. Right arm, left arm, right leg, left leg. He doesn’t have enough meat on the rump so I guess it’s a good thing he only got four shots.

Today was his follow-up with Orthopedics. He had a new x-ray of the ankle taken when he was in on the 17th and took that with him. It’s not any better, but it’s not any worse either. He does manage to tolerate all his daily activities okay, but he sure does pay if he overdoes it. He does need more activity, but fortunately spring is sneaking in and we should be ready to get the bikes down soon.

We did a follow-up at the Onco clinic since he didn’t get a phlebotomy at his last checkup and he was going to be down there missing a day of school anyway. This way he won’t have to miss a second time. Everything is still looking good. They did do a phlebotomy today and he doesn’t have to go back for three weeks. The doctor said they’d present his case to the team this Friday and would discuss long-term goals for him after he’s off the Tacrolimus and the Medrol. We’re looking forward to that visit. I’d kinda like to know the long-term plan myself. Long-term. That has a nice ring to it, doesn’t it.

My obligatory February post

2006-02-21T15:14:00.000-05:00

Well, Josh recovered from his flu and has been back in school for, wow, three weeks now? I swear I updated this since then. Either Blogger is eating my posts or I’m getting senile. Last week a friend asked about the blog and I told her I’d just updated it and she said, “Yeah, January 27th.” So I guess you folks are more on top of this than I am.

What I really hate about these little setbacks is that he always loses weight, usually just when he’s starting to make some progress. This time was no exception. He dropped down to 75 pounds and wasn’t eating worth beans. But he’s been making a concerted effort to eat better and is back up to about 82 pounds and continuing to eat better every day. He’s also taken to drinking an Ensure every day and that has lots of calories.

One of the good things to come from this is that he's off the PICC line and we’re not tied down three nights per week with IV treatments. All his meds are oral now and we’re reducing the Tacro, Medrol and Diflucan, slowly tapering him off all the immune suppressants. Again.

The bad thing is that he's off the PICC line. That means he gets poked at the clinic for blood and gets a big poke for the phlebotomy every couple of weeks. Some of the techs are really good; some have trouble with his veins. It’s the luck of the draw, but they usually try to find someone for him who's good with small veins. He gets so mad about it, but takes it really well. He’s gotten to be pretty stoic about needles.

There are no doctor appointments this week but last week was busy. Monday he was at the lab all day getting IVIgG. It's been ages since he has needed that, so it's lasting longer and longer between infusions. His last infusion was before Thanksgiving.

Tuesday he had to go to Ann Arbor for the growth hormone test we had to cancel when he got the flu. It wasn't fun. It left him drained and feeling sick most of the day. They start an IV and draw blood, then inject some med which makes his pituitary gland secrete the growth hormone then draw blood again and compare, repeating every 30 minutes for 3 1/2 hours. They see how much he's making on his own, etc. and compute the dose he’ll need. His follow-up with the results will be in March.

Friday was his regular clinic visit. His labs were great; the liver enzymes were still a little elevated but they think that's because he missed a phlebotomy. The creatinine was down so the kidneys are functioning normally.

Saturday was a real treat. We got our first email from Josh's donor. I’ll respect his privacy and not gush about him here, but it made my day. He seemed genuinely glad to hear from us. I thought it was interesting that he was anxious to contact us and then got cold feet when he got our information. That was Josh’s reaction to a tee. It was very emotional for our family and I’m sure it has a big impact on him as well. He sounds really nice with a lovely family. We’re all looking forward to getting to know them.

Parainfluenza 2

2006-01-27T11:12:00.000-05:00

Still nothing back on the blood cultures. One other culture they drew was a viral study from his sinuses. That was not fun; a small catheter inserted through the nose, then squirt some saline solution into the sinus cavity and suction it out. Twice. Josh did not like that a bit. But that’s the culture that came back positive. Parainfluenza 2! The kid has the flu.

He was much improved last night and was sitting up and conversational. We watched Lost (yes, two days late, but on tape) and chatted. He ate reasonably well yesterday and they’ve pulled all his IVs and have him on all oral meds. Bonnie called this morning and they’re writing his discharge papers. Good! He can rest at home a lot better than in the hospital. And he can start catching up on homework.

Much better

2006-01-26T11:23:00.000-05:00

Throughout the night and yesterday morning Josh’s blood pressure was very low, down in the 86/48 to 96/56 range. His temperature was running between 102 and 103.7, his heart rate was accelerated and racing between 110 and 130 and he was pretty out of it.

At least that’s how I left him when I went down to eat lunch. I came back up 25 minutes later and he was sitting up and looked so much better. He looked at me with clear eyes (for the first time in a couple of days) and said, “Dad, I want to get something to eat.” That sounded good to me. His fever was down and his blood pressure was better. He said they’d come in and reduced the Dopamine he was taking to raise his blood pressure. It continued to improve, so an hour later they stopped the Dopamine completely and his BP continued to improve. They monitored him another hour in ICU, then wrote up a transfer order back over to the BMT ward at Karmanos and 4 ½ hours after that we finally got settled in over there.

He’s still having some nausea, but it’s better. It didn’t stop him from wanting a chicken sandwich from Wendy’s for his first meal. He ate about a third of it. He paid for it with some cramps but kept it down. He decided that some Progresso chicken soup wouldn’t be so bad after all until he’s doing better. His fever is still low grade and he’s having some headaches but that’s all getting better.

Now that they’ve pulled his PICC they’re trying to tailor all his meds to be taken orally so he can go home. Coming out of ICU he had two IV lines, one in each arm. The right arm blew and swelled up like Popeye’s and he’s being very protective of the line in his left arm.

So far nothing has grown back in the cultures so we still don’t know what this is, but they’re pretty well convinced it’s a line infection and is probably in his blood stream as well. On the other hand, it sure did clear up quickly once the PICC line was pulled and within 24 hours of starting the antibiotics. He’s continuing to give the Vancomycin and Cipro via IV at the hospital, but are looking for oral antibiotics to send him home on.

Meanwhile, if they drag their feet, he'll be in for the weekend and none of us want that. He's getting angry and restless now and is ready to get out of there. They'll probably kick him out today just to get rid of him. More likely tomorrow or Monday, though.

Something is up, we don't know what

2006-01-25T07:26:00.000-05:00

Josh was out of sorts over the weekend, but nothing specific--just didn't feel good. Monday, one of his teacher's called and said he was lying on the floor and got real light headed when he'd stand up. We picked him up and brought him home. That night, his PICC line was clogged and we thought there might be an infection, but there was no fever. We flushed it and let it sit overnight.

Tuesday morning it was still clogged so we called the clinic and they said bring him in. He started a low grade fever while in the clinic and was complaining of nausea and was lightheaded whenever he’d stand up. They checked his blood pressure while sitting, then standing and it was dropping very low when he’d stand. In the afternoon he started vomiting and they thought they'd better admit him and keep an eye on him. They’re guessing he’s got an infection and pulled the PICC, but it’s looking like it’s probably in the blood as well. They drew cultures and now we’re waiting out the cultures to target with the right antibiotics. For now, they’ve started him on Vancomycin and Cipro.

Bonnie called at 1:30 this morning to let me know they were moving him to ICU over at Children’s Hospital. His fever was up over 103 and his blood pressure was dangerously low so they wanted to be able to monitor it. The two of us will be splitting the time to have a parent at the bedside at all times for medical decisions until he stabilizes. I’ll update when I can once we know anything.

This post is not about Josh, who is doing fine, thank you.

2006-01-13T12:50:00.000-05:00

This post is about Bonnie.

Josh was first diagnosed in November, 2001. He was 11 years old. Life has gone on. Yes, it’s been a battle and a veritable roller coaster, but through it all, Josh has never been alone. Leukemia is his fight, but he has had lots of great support.

Bonnie has born the brunt of it. She has set aside her career, postponed her goals, deferred her dreams and been nurse, taxi, advocate, patient coordinator and mom. She has more hours sleep on hospital chairs than in our bed. And through it all she has maintained some semblance of sanity.

Now she wants to do something more. She is training for a half-marathon to raise money for the incredibly worthy organization, The Leukemia & Lymphoma Society. If you can help her out, please go to her fundraising page at:

http://www.active.com/donate/tntmi/tntmiBFitch

Thanks.

First post of 2006

2006-01-06T13:21:00.000-05:00

Another month has gone by. No news, is good news, right?

We have now negotiated our first Thanksgiving and Christmas without any hospital visits since Josh’s first diagnosis in November, 2001. It was nice celebrating at home, thank you very much.

So, how’s the kid doing, you ask? Since it’s an even day, we’ll say great. Odd days seem to be causing some problems. He’s been dealing with nausea again and it seems to be on alternate days. Some days he can eat great all day, on others it can be a struggle. He’s been loosing weight again because of it. It’s usually a smell that will trigger it and he doesn’t seem to get much warning, either. The doctors think it could be caused by the Abelcet he’s getting via IV at home three times per week. It could also be a mild form of GVHD. He just has to deal with it and we have to find ways to get him to eat better and keep his weight up.

Other than that, he’s doing great. His blood counts and checkups have been good for his last three clinic visits. He started his series of childhood immunizations last month. He gets to repeat those since his immune system was wiped out with the transplant. He’s taking them a lot better at age 15 than when he was two. It’s hard to believe he’s just two weeks away from 16.

He had another appointment with Endocrinology and they want to run some tests then start him on Human Growth Hormone (HGH). It will be a few months to get the tests and determine what he’ll be taking. They definitely have some benefits and Josh perked right up when the doctor was discussing how they’d help his bone density and muscle tone. They won’t, sadly, help the Avascular Necrosis in his ankle. That’s here to stay. Josh will have an autopen injector for the HGH and will give himself a shot each night before bed. Once started, he’ll have to continue these for life but they will provide some real benefit. The doctors at the BMT clinic were glad about it and said it would not conflict with any treatment or meds he’s on.

The dry eyes he was dealing with in December have cleared up pretty well. They think that’s something that will flare up from time to time from now on but he’s managing it well with the preservative free eye drops and we found some which weren’t as expensive as the first ones we’d picked up.

Josh finished his first semester back at school after missing two years. He’s done a great job academically, which was a major concern for us after all that time off. He manages his time and studies really well and we’re really proud of him. He pulled down mostly As, but he’s going to have to do something about Art. Okay, I can’t draw a straight line, either, but he’s got to – at least for one more semester. We still have to figure out a way for him to get his gym credits as his Orthopedic surgeon requires that he not put any impact on that ankle for at least one more year, i.e., no gym through December, 2006. He also still has that PICC line in his left arm, so he can’t do any upper body stuff.

Oh, well, people have been asking for an update. Be careful what you ask for.

Another overdue update

2005-12-08T15:02:00.000-05:00

What do you mean December 8th. What happened to November?

Josh’s hospital stay was just two days and appeared to be just a bug. He had a rash and some itching which appeared to be GVHD but everything else cleared up and the rash has gotten better. So he got home and got caught up on homework and back to school. He had five days off for the Thanksgiving holiday then attended a full week of school the following week.

He went in for his regular check-up the Friday after Thanksgiving and his liver and kidney labs were both a little elevated so they wanted to see him again the following Friday. We went back December 4th and they had improved.

He’s still not gaining a lot of weight but his appetite is better and he’s gaining slowly. If he’d eat at home the way he does when we go out he’d weigh a ton.

During the past week Josh’s eyes have really bothered him. He’s been in to see the ophthalmologist at Beaumont twice this week and goes back on Friday. His eyes have been extremely dry and they burn. He’s been using artificial tears since his last bout of shingles in the right eye but this has gotten worse and they haven’t been effective. The ophthalmologist believes it is GVHD. There is no infection and dry eyes are a common symptom of GVHD. He’s tried several different prescriptions this week and it looks like one of them may have burned his eye and actually made it worse. We’ve got a pretty good combination of drops and ointments working together now and I hope he’ll start showing some improvement and getting some relief.

Josh got the x-ray for his orthopedics appointment a couple of weeks ago. He took it with him to his follow-up with them and it appears there is no improvement to his ankle. It’s not any worse, but it hasn’t gotten any better. Right now, there is nothing they can do. He’s to continue taking the calcium supplements and Fosamax and go back for another check-up in 3-4 months. The surgeon wrote Josh a note for school excusing him from gym for the next year. He doesn’t want him to stress his ankle at all – no running or jumping or anything with high impact. The bottom line is that he’s hopeful Josh can tolerate the discomfort in his ankle until there are more advanced replacement surgeries available for the ankle in 7-10 years.

In the meantime, Josh is continuing to carry on through it all. He’s doing great in school. It tires him, but he’s managing full days and just needs a little down time when he first gets home. Then he gets dinner and some TV or video games after his homework, then early to bed. When he runs out of steam, it hits him all at once and he’ll just stop what he’s doing and head up to bed.

How can you tell it's November

2005-11-09T15:30:00.000-05:00

Josh woke up Monday morning about 2:30 a.m. with vomiting. Lots of it, two or three times an hour until about 7:30. The fever kicked in about 5:00 a.m. 101, then 102.5 an hour later. We called the clinic and he and Bonnie headed down. They drew blood for cultures and hooked up some IV antibiotics; standard drill. His fever was up to 104 by noon and it was a foregone conclusion we’d be admitting him.

It took a while to get him a bed, but by the time I got to the hospital after work they were discharging someone and just waiting for housekeeping to clean the room for him. He had a pretty miserable afternoon with a reaction to something, probably a new antibiotic they tried. It had him itching all over like crazy. He was finally able to settle down about 7:30 p.m. and slept.

His fever broke on Tuesday and he felt better and started eating again; crackers and soup. If it was flu, it was a particularly vicious one. The doctors are thinking it’s probably a viral infection and he’s fighting it off. They discontinued the antibiotics and discharged him this morning. We’ll keep him home the rest of the week to rest up, but he can start on his homework and get caught up before he goes back to school next Tuesday.

Milestones

2005-10-28T07:57:00.000-04:00

Anniversaries mark the milestones and give pause for reflection. November marks several for us going back four years now.

November 9, 2001. The first stop down this path which has defined our lives the past four years. I started a journal in 2001, but didn’t start blogging until August, 2004. On November 13, 2001 I wrote my first journal entry;

“D-Day. The day they dropped the bomb on us. Our world shattered.  I spent the weekend preparing for our conference with the doctors, gathering facts. Information. Information is king.  The information superhighway. Facts, statistics and damn lies. There are no facts. Just Josh and leukemia. Leukemia! What a devastating word. What type is it? Pray. Pray for it to be Acute Lymphocytic Leukemia. I need it to be lymphocytic. That’s his best chance. Please, God, don’t let it be non-lymphocytic. Lymphocytic. There’s a new word to add to the dictionary. It has a red squiggly line under it. Right-click and add to the dictionary as its now part of our lexicon.

“Just got home when Bonnie called to say Dr. Main had called.   It’s non-lymphocytic.   Acute Myloid Leukemia.   Go to the internet and get information. Odds are now cut in half. Damn the odds. Josh is one person. Leukemia is one disease and this is one battle. Man against disease. We just have to fight. The odds are just statistics. Have to focus on Josh. Be strong, help him fight.

“Restless all night, finally drifting to sleep. Woke at 4:30 a.m. Mind racing, more crying. Have to cry in bed, in the car—anywhere but in front of Josh. Strong front. Pray. Didn’t help. Pray some more. Finally, a little peace. I come in and start writing since I can’t sleep.

“Josh’s spirits seem so good. I know there’s turmoil going on underneath. He had figured out most of it over the weekend picking up on all those little clues. He’s a strong, gutsy kid. I think he was relieved to have it named. Not knowing is what keeps the mind numb, scared.

“Fear is definitely the enemy. It saps our will and we need it to fight.  Mind, body, spirit.  Wholeness. We need a strong, positive mind and spirit to battle this disease in our body. Our body? His body. God, I wish it were mine instead.

“He has such a great support staff.  The people at the hospital are angels of mercy. They are so caring and dedicated. They’re just wonderful. Great doctors. Every aspect of his care is so reassuring.

“Have to shower and go relieve Bonnie so she can clean up and get back for meeting with Dr. Main. It’s time for us to get all the facts this morning. At least the first round. And time to join battle, start treatments. Look out leukemia. Today we start killing you off. You only got through the first round because of your rotten sneak attack. Now we’re fighting back.”

And I look at Josh now and know that every day of the last four years has been a blessing.

Much better

2005-10-27T13:24:00.000-04:00

Josh’s clinic visit last Friday confirmed what we already knew. Labs continued to improve – along with his appetite. Everything is looking good.
He’s been doing a full day of school Monday/Wednesday this week, with a half-day Tuesday/Thursday. Should be a full day tomorrow too, but we’ll see how his stamina is. He’s actually held up pretty well.
Man is he a different kid when he feels good. Welcome back, smart-aleck, I’ve missed you.

Feeling better

2005-10-19T15:38:00.000-04:00

Josh was feeling better by Sunday evening. Monday he felt well enough to go to school in the afternoon. Tuesday he went a full day and then went to get a blood draw on the way home. We got the lab results today and they confirmed what we already knew by how feisty he’s been the last couple of evenings. The creatinine levels are down so it looks like reducing the meds was just the ticket.

Getting to the bottom of this

2005-10-14T11:37:00.000-04:00

Josh has been home all week and just not feeling well. No temperature, so that’s a big relief. Just nausea, vomiting and diarrhea. The diarrhea has been better. He describes it as up and down, nausea coming in waves. So…
Bonnie took him down to the clinic today as there hasn’t been any improvement through the week. They keyed in on his labs; his Creatinine was high (kidneys). Reviewing his meds they were concerned that the high volume of all these meds were part of the problem. So…
A large reduction in his meds starts now. Hooray! Much of this was long overdue. There are risks, of course, but I think he’s ready and I certainly don’t want to put the kidneys at risk. Stop the Cipro (antibiotic), reduce the Tacro (immune suppressant) from 2 mg twice daily to 1 mg twice daily, reduce the Keppra to 250 mg twice daily, and reduce the acyclovir (anti-viral) from twice to once daily.
I hope we’re on the right track, but whether we are or not, this has to be a huge relief on his system not to have to process all these meds daily. There are still plenty of pills above and beyond that, but his little cup of pills twice a day now has a good dent in it.

Update and overdue -- they just go together

2005-10-11T11:01:00.000-04:00

Josh’s blood counts are still good. Chemistry came back good, so they reduced the Tacro and left the steroids at 8 mg daily of Medrol. They didn’t want to reduce both of the immune suppressants at the same time, but he’s still tapering off. I hope that will help with the shakiness caused by the Tacro since it’s been pretty bad lately. It makes simple things a lot more difficult when your hands are shaking so bad.

Josh is dealing pretty well with everything physically and is doing well academically. He is having some anxiety, though; not sleeping real well and is losing meals and having some nausea. That could be some GVHD in the gut again, but I think it’s mostly stress.

Fatigue is still a huge issue for him. We’re pushing and he’s trying 1/2 day - full day - 1/2 day at school. He was doing pretty well, but tired. Then this week he’s stayed home with some vomiting and diarrhea. Having just had a checkup Friday, we’re thinking this is just a bug. Everything seems to point to that, but I hate for him to not be eating. He’s still not putting his weight back on.

I think he's mostly frustrated and discouraged because he thought he'd be better physically by now. The literature says 6-12 months to recover, but could take as long as two years. He'll be at eleven months post-transplant next week. All in all, he has been going through all this for almost four years now... it wears you down.
I’m trying to convince him this is normal and he's doing great. It never really ends, does it? He's going to have to live with some aspects of this and learn how to be normal using this 'new' normal and just be happy as his strength and energy return.

Gradual and patient are just not teenage words, are they? Can’t say I’m real good at that either.

Recovery

2005-09-22T06:33:00.000-04:00

Josh is home. The gall bladder came out nicely and they didn't have to open him up. Just four small punctures around the gall bladder for the lapriscopic removal. They kept him overnight to observe, changed his dressing the next morning and he was home by noon. He's sore and the pain's been significantly more than any of us expected, especially him. He's taking Dilaudid and resting. Today he should start moving around more. He's had to be a little carefu with his diet, but he's doing well.

Galling

2005-09-16T13:09:00.000-04:00

The surgeon and oncology agree, the gall bladder must go. Josh is scheduled for surgery on Tuesday, next week. He'll be able to attend school for his Monday afternoon classes and will be able to get his homework for the week to stay up with his studies. They think they can probably scope it, but my find out when they get in they have to open him up. We'll see. If it's just via scope, they should just keep him overnight so long as there are no complications. They will boost his steroids for the surgery, but that will be preventive via IV while he's in. Surgery also suggested they get another liver biopsy while they're in there to see if the GVH in the liver is clearing up as it appears to be. Two for one.

They've reduced his steroids dose to 12 mg once a day. Progress. And we hope that not taking them in the evening now will help with the restlesness at night and he'll be able to sleep better. No labs back yet, but he's looking good.

What's goin' on?

2005-09-15T12:20:00.000-04:00

Okay, it's been close to a month, so I guess you can surmise that things are going pretty well. After missing the first week of school Josh was cleared to attend half days and he's been going four days a week for the last three weeks alternating morning and afternoon so he's hitting all his classes. He's been a little tired, but overall he's handling it great and is doing very well. He's been very responsible to get all his assignments and get all his work completed. We've been really proud of him. High school is a big enough adjustment without having to come in off a two year layoff.

His energy level has been pretty good, though he does take it pretty easy in the evening and gets to bed early. His ankle had been feeling pretty good, but is bothering him again now that he's on it all day and walking so much. It probably doesn't help that his book bag weighs 20 pounds, too. He's been wearing his brace, but that's not very comfortable and is hard to walk in.

He still has a PICC line so blood draws at the clinic still don't require a poke. That's nice. I'm not sure how much longer they intend to keep it in, but it's working out since he's getting Abelcet as an antifungal every Mon/Wed/Fri via IV over two hours in the evening. Preventive medicine.

His graft versus host disease responded well to the steroids and Tacro. He's been tapering off the steroids for about three weeks now and hopefully he'll be off them again in another 4-6 weeks. Once he's off steroids, we can start to taper off the Tacro again and get back to normal.

During his clinic visit tomorrow will include a consult with a surgeon to determine whether or not to remove his gall bladder. They've been concerned that he still has a significant number of gall stones and think it could pose a serious risk of infection if he were to pass one. They've deferred it to the surgeon who will determine what the risks of surgery would be. If the gall bladder is small enough, it could be done via lapriscope and reduce the risks from a large incision. It's been enough of a problem that I think he'd as soon be rid of it, but we are mildly concerned about a surgery right now.

His appetite's been good and he's been gaining 3-4 pounds per week. He's regained about half the weight we lost in August. That, in turn, is giving him more strength and energy as he starts doing more. We're all very satisifed with his progress.

Ok, an update is in order

2005-08-19T10:25:00.000-04:00

Lots of mixed news. Some good, some bad, some bitter.

Josh had his liver biopsy last Friday (August 12th). Interesting aside, they decided against the old needle biopsy in favor of running a tube through the jugular, entering at the neck and snacking a tube through the vein down into the liver. They then passed their little tool through the tube into the liver and took samples from several different areas. Much less invasive and he only had one small puncture at the neck which healed up nicely in a couple of days with no discomfort. I'm all for that.

As in any test, we began the wait for results. The upside of this wait was we waited at home. They kept Josh for observation until about 4:30 p.m., then sent him home. He had finally been fever-free all of Thursday and Friday. He was still having some headaches and wasn't feeling too hot when we got home. His headaches were better over the weekend, but he just felt bad. We got him to drinking and he started showing some improvement. I think he was just really dehydrated. By Sunday night he was feeling a little better and had some energy.

He went back to the clinic Monday for a checkup and everything was about the same so he continued on the same meds and dosage.

It was Tuesday evening when we finally got the results of his liver biopsy. Nothing they didn't expect to find. It is graft-versus-host disease in the liver. Continue the Tacro and Medrol to suppress the immune system and the (Medrol) steroids for treatment. They also said he shows a high accumulation of iron in his system and that was highly visible in the liver. The doctor said that's common when you've had as many transfusins as Josh has had. The treatment will be to bleed him. No leeches. Just 1/4 liter of blood through his PICC line every other week or so. They watch the hemoglobin and when it's high enough they'll drain some blood and this will be self correcting as his system replaces his blood.

The bitter pill, which Josh took really hard, was that school is on hold. Of course, school won't wait, we'll be getting his assignments back and forth, but since he's immune-suppressed again, they don't want him exposed to all the germs. How long he'll have to work from home remains to be seen, but we hope it won't be much more than a month.

Josh lost a lot of weight again while he was in the hospital those last two weeks, about 20-25 percent of his body weight. He's feeling a lot better and is starting to eat and get his strength back up and it shows in his attitude and spirit.

His checkup today was good and they reduced his Medrol from 20mg to 16mg. They also told him he could go to school Monday (just Monday, not full time) just to meet his teachers and get assignments and he's excited because he'll be able to see everyone. I'm excited too, because he really needs this.

Thursday update

2005-08-11T11:39:00.000-04:00

The cytogenetics aren't back on the bone marrow yet, but the first labs are and there is no evidence of leukemia. Wheww! The marrow is teeming with eosaphils (sp?), a type of white blood cell, which indicates he's got some type of infection or allergic reaction. They're re-looking at all his meds to see if something there could be the cause. For now, he's going to stop taking the Fosomax which, for my money, is a likely candidate for the culprit. This all started about the time he started taking it and its purpose is to cause the body to absorb all calcium you get straight into the bones. Hmmm!

The results on the biopsy of the rash are also back and showed GVHD as well as a possible allergic reaction. So he'll continue on Tacro and Medrol. The Tacro level in his blood still hasn't achieved a therapeutic level so they've increased the dose again. He's going to continue on the reduced dose of Keppra since he's back on Tacro, but they won't bump it back up and will continue to taper it off once his Tacro and Medrol levels are stable.

They are going to biopsy the liver. They thought they might do that tomorrow, but it looks now like they might get him in this afternoon. The liver enzymes did come down a little today but they're still up there so they feel they need to get a look at it to get to the bottom of this.

He lost another IV yesterday. His veins are just shot right now. They say that's common given all the chemo he's had, etc. They put in a PIC line last night and that will stay in even when he goes home. We're still shooting to start school in a week. May not be able to take gym right off the bat, but he intends to be there.

We don't know much...

2005-08-10T06:49:00.000-04:00

…but what we do know is the HLA typing on his spinal tap came back as 100 % donor cells. Hooray! They’re running DNA tests on his bone marrow aspiration as well and that will be more definitive. All other tests have still come back negative and we’re still in the dark. They also did a biopsy on his rash while he was under for the aspiration.

They consulted with neurology on his headaches and their resident came in last night and did the initial exam. She’ll discuss it with her attending and they’ll be in today. I got the impression she doesn’t think it’s migraines and she had read his C-T and MRI and said they were both clear. I think they’re thinking tension.

Josh’s appetite picked up significantly yesterday. The up side of steroids. They increased his dose up to 20 mg twice a day. Pretty heavy dosage. He’s not happy about it. We’re all still thinking this is going to be resolved enough to start school on time, but he doesn’t want to go back to school with his face puffed up from the steroids. Readjusting to a school routine is going to be rough enough without having to cope with issues about his appearance, but cope he will.

Nothing--that's all I know

2005-08-08T06:44:00.000-04:00

Nothing definitive to report. Lots of tests completed, all still pending results. There is no express lane to get quick results on lab cultures. Those darn bacteria, viruses and fungi will only grow at there own rate. And we wait. Poor kid sure could use a central line this time. He’s been poked multiple times daily for blood samples his IV lines keep failing. They’ve had to start five new lines in the eleven days he’s been in. He’s been very good about it

What we do know is that except for the positive on the parvovirus, everything has come back negative so far. They’re optimistic about the spinal. Although it will still take several days to get all the results back on viral, bacterial or fungal meningitis; the fluid was clear and didn’t show any white cell increase which would be evident if it was fighting something off there, so they are optimistic (huge sigh).

The sinus infection has mostly cleared up, but the headaches have not. And they are not responding to normal pain meds, i.e., ibuprofen and/or Tylenol. So he’s still getting Dilaudid via IV. The headaches still hit once or twice a day, but they haven’t been quite as severe. The bottom line is, they just don’t know what is causing the headaches although the parvovirus or graft versus host could both be a factor there.

They are mainly leaning towards this being graft versus host disease, primarily because the liver enzymes have stabilized and begun to gradually decrease since he started back on Tacro for immune suppression. They/we are waiting for the HLA typing to come back to see if it’s his or the donor DNA. If it’s still the donors, then all is good and we’ll continue to treat the graft versus host. If it’s his DNA, then it’s likely the cancer is back and we’ll have to do a bone marrow aspiration to verify. We’ll only address those options if it becomes necessary. I certainly don’t want to think about it.

If it’s graft versus host, then we’ll keep him on the Tacro until it stabilizes and then start to taper him off again. Hopefully it won’t require steroids, but they’ll be brought into play if the Tacro isn’t effective by itself. We don’t know yet how this is going to affect school. We hope he’ll be able to start on time. The doctors will have to access it and it will be their call since he’s back on immune suppressants. He’s still got two weeks before we get started, but right now he wouldn’t be up to it. He sure needs it, though; physically, mentally, and psychologically. It would be a huge boost for him.

Sinusitus, parvovirus and meningitis

2005-08-05T06:42:00.000-04:00

Josh had another massive headache last night which took forever to respond to pain meds. He got some relief with an intra-muscular shot of Dilaudid after Tylenol and Dilaudid in pill form had failed. It took about an hour and a half and he was sobbing with pain for about half of that.

They're thinking Meningitis and he's scheduled for a spinal this morning to rule that out. Okay, they say Meningitis is not very high on their list and they just want the spinal to rule it out, but Josh has a way of always having what they say they don't really suspect. I'm suspicious. The more I read last night, the more the symptoms match and nobody has been able to come close to explaining why he's continuing to have these headaches. If it is, I think it's probably viral as bacterial would have been much more progressed and deadly. This has been going on too long.

I was so shook about the Meningitis I didn't even think to ask how they're treating the Parvovirus which came back positive. I'm no longer looking to get home this weekend and that's too bad because Josh is getting tired and restless in the hospital. He's anxious to get out of there. We all are.

More catch up

2005-08-03T11:49:00.000-04:00

Well, enough is enough and when Josh’s temps started spiking up to 101.7, were more frequent and the headaches were becoming more frequent and more intense, we called the doctor and he wanted to see him. He went down to the clinic and they decided to admit him. They started a new antibiotic, Cephepime, via IV. Switched it a day later to Ampicillin. Now they’ve stopped the antibiotics completely.

They ordered a CAT scan of his head to take a good look at his sinuses. I was more than glad for that as these headaches have been an ongoing concern for me. They've been persistent for too long and have been increasing. The CT cleared that up, big relief. It showed signs of "some" infection but appeared to be clearing up some. Good! I'm very glad also that they decided to get him in there and be more aggressive in the treatment, etc. Four weeks is too long for anything to 'linger.'

He went into the hospital on Thursday and it took the weekend to figure out the antibiotics weren’t helping and it probably wasn’t the sinus infection that was causing the fevers. The started taking blood for viral studies and we’re waiting on those, but now they think it could be a parasite. That could explain the fever and the elevated liver enzymes along with another blood chemistry which has been elevated on his labs from the last three weeks. It was a new, young resident (hereafter known as ‘Baby Face’) who devoured his chart (three years worth) and his labs and put it all together.

Now we have Infectious Disease consulted in. They’ve taken the appropriate blood samples and we’re waiting on those, but they really want stool samples to nail down the parasite before they start treatment. Josh, of course, is constipated. Once they’ve identified the bug, he’ll just have a couple of days of pills. The pills make you fell terrible (they say), but he’s felt bad for a month now, so a couple more days won’t be too bad.

They also did an MRI of the head just in case there was an abscess on the brain since he has the history. They also did an ultrasound of his liver to see if any parasites showed there. Both came back clean.

We’re scheduled for an appointment with Endocrinology, but the earliest appointment they had open was November.

School's going to be a rough adjustment and we want him to have his strength up. His ankle seems to be better, not much limping. I don't know if it's all that calcium going to work or he's just not on it much. Hopefully the calcium is helping but at least he knows that staying off of it helps.

Catching up

2005-07-22T12:41:00.000-04:00

What’s been going on? Josh had a pretty good time at camp in Montana, at least on the front end. Of course, he overdid on the front end doing the things he likes and could barely walk on his ankle the last three days. He had some bloody diarrhea the last day and the clinic there got him on an early flight out so he could get checked out at home in case it was GVH. I think he was ready to get home anyway. At least that cleared right up.

He has had a lingering sinus infection since he got back, that’s oing on three weeks now. He was back in to the clinic Monday and they prescribed a nasal spray and antibiotics. He’s still running low grade fever though and has headaches and sore throat from the sinus pressure and drainage, mostly at night.

He saw Orthopedics about his ankle. They said it wasn't bad enough to put in a cast, but he got a plaster of his foot done last week and they'll have a custom fitted brace for him ready in a couple more weeks now. He’s continuing the calcium supplements three times a day along with a weekly dose of a pill which causes all of his calcium intake to be absorbed right into the bones. Orthopedics was straight up with him said it might heal, in time but wouldn't commit to a time frame, he’d just have to wait and see. They told him it might not and that he might have to live with it, including the pain. Any time he knows he's going to be on it, he's supposed to wear the brace and take ibuprofen prior to activity. Orthopedics considers the surgery option too risky. They said that if they went in, there was a very high probability they would destroy cartilage and that couldn't be replaced.
This was a hard pill for him to swallow as it could essentially mean no more sports. Actually, it means probably not, but it’s not definite. He took it pretty hard. He knew he wouldn't be able to play anything this year, but was counting on getting back to track and basketball for his sophomore year.

He can drive now. He does a pretty good job but isn't real anxious to jump behind the wheel. Traffic here is insane and it makes him a little nervous. We're just taking little trips when it's not too busy.

He's been a little antsy but he got the new Harry Potter book Monday afternoon and has been buried in it. Finished it Thursday and passed it to me. I’d been snatching it off his night stand after he went to bed and reading a couple of hours and finished it last night too. J.K. Rowling gets another A+ from both of us. The only thing missing was “To be continued…” at the end of the final chapter.

He still needs to take his placement test for his high school classes and we haven't scheduled that yet. He hasn't been studying much, a little math sporadically and Tammy’s been coming over and working on writing. It’s a bit hard for him to get motivated but he's done pretty well. His other frustrations are overflowing into other areas, though and he's pretty testy, right now. I suppose it doesn’t help that he still just doesn’t feel all that great. You do learn to live with chronic pain, but it isn’t easy and I hate for him to have to go through that.

Bon voyage!

2005-06-28T07:11:00.000-04:00

Josh got the MRI on his ankle yesterday. We won’t know much on that until he gets in to see orthopedics and endocrinology on the consults. They’ll do the read on it. The report on the x-ray read:

“X-rays of frontal and lateral view of right foot show diffuse osteopenia of the bones. The ankle mortise is narrowed. Growth arrest lines of the distal tibia particularly in the region of the physis are noted. There is narrowing of the ankle mortise. The density of the talar dome is abnormal. No fracture observed. Diffuse demineralization with abnormal density within the talar dome. MRI of right ankle is recommended for further evaluation.”

I guess my foot would hurt, too. But Josh is managing it well. I know he’s going to overdo next week at camp, though.

Josh couldn’t eat before the MRI yesterday since they had to start a line and introduce some contrast for it. So Bonnie called and I met them for lunch at the Applebee’s by the Secretary of State’s branch office. Yes, the Sec/State that issues licenses. He had some baby back ribs (I wish he’d eat as much at home as he does when we go out) and then went over and got his Learner’s Permit. Then he drove home.

I’m meeting them today at the tank plant in Warren so we can renew his military ID card. He and Bonnie’s cards both expired sometime last year but we had other things on our minds besides updating ID cards. We’ll get them both renewed today.

And early tomorrow morning he’s off to the airport to fly to Montana. Bon voyage!

Checkup

2005-06-24T14:42:00.000-04:00

Josh has finished the Driver’s Ed. classroom instruction and has driven 5 of his 6 required hours. His final driving session is Sunday at 2 p.m. and is a review of all the other sessions; driving in traffic, parallel parking, freeway, etc. He gets his certificate of completion and then goes to the Sec of State for his Learner’s permit. He may or may not get over there and get that before he leaves for camp in Montana Wednesday.

His bi-weekly checkup was today and he still looks good. His blood counts are unchanged. Everything looks good. The x-rays they took two weeks ago did show there is some bone deficiency in the right ankle. The MRI on Monday will provide more info. He’s to start taking some OsteoCalc for a better calcium supplement with added vitamin D and will consult with Orthopedics and Endocrinology once he’s back from Montana July 6th.

Recovering

2005-06-13T10:59:00.000-04:00

Josh’s checkup on Friday was good. His blood counts are great and his blood sugar level sure points to the diabetes having cleared up. He hasn’t needed an ‘adjustment’ dose of insulin for the last two weeks. Dr. U sent him down to get an x-ray of the right ankle although he was pretty sure it wouldn’t show anything and he was right. That at least rules out fractures which is good. Still waiting for the MRI on the 27th I guess. Stephanie did prescribe some Tylenol III for when he’s done too much and the pain is really bad. He’s only needed one so far, so he’s managing it pretty well.

Saturday was the day designated to overdo it. Despite missing most of the school year, Josh had most of his class over to celebrate the end of the school year in a backyard bash. They came, they ate, they drank (wow, can they ever do the dew) and seemed to enjoy themselves. I can only speak for one, Josh had a great time. He really needed Sunday for recovery, but it was so good to see him having fun. This was long overdue.

Ankle-bitten

2005-06-09T06:48:00.000-04:00

Josh’s MRI for his ankle is scheduled for Jun 27th. We'd like to get him in sooner, but that place stays busy. We’ll have to see what they say during his checkup tomorrow. It’s really hurting him and slowing him down. Stephanie had said to try ibuprofen for short term relief, but that hasn't helped much. I was wondering about ultrasound or some other treatment to get him some relief. He wraps it when he’s going to be walking a lot, but that only helps a little.

Going a couple of weeks between check-ups doesn’t leave a lot to report on between times so this Blog doesn’t get much attention. That and we’re just getting busy again. Josh has started his driver’s ed. this week, going from 8-10 a.m. Monday through Thursday for three weeks. In addition to the 24 hours of classroom instruction he has to fit in six hours driving with the instructor. After that he can get his permit and start driving with one of us.

Tuesday night he had his 8th grade graduation and he was in his element. It does do your heart good to see him relaxed, happy, and having a good time. Course work not complete, but he did a pretty good job of keeping up and with some tutoring this month he should be ready to take a placement test for when he signs up for his high school classes. Thank you! Our Shepherd staff and faculty. You're all fantastic. And all you 8th graders there are pretty cool, too.

Home

2005-06-02T19:57:00.000-04:00

That is all.

Just a bug?!?

2005-06-01T06:48:00.000-04:00

Poor kid just hasn’t felt good. He slept most of the day in the hospital. The last time he vomited was 10 a.m., but he still had some pretty severe nausea off and on all day. The doctors are pretty sure this is just a bug, but we’re still waiting on all his labs. He felt somewhat better last night and had a couple of hours of lucidity in the evening. Then back to sleep. His blood pressure was very low. Dehydrated. They increased the drip on his IV and it came up a little. He was only taking ice chips by mouth and a couple of sips of water with his pills. If he feels better this morning, they’ll have him start clear fluids and then a BRAT diet. Hopefully we’ll be home before week’s end.

Dr. U and Stephanie came in while I was there last night and I got to talk to her about his ankle. They’ve got him scheduled for the MRI on Sunday, June 12th. They’re 99% convinced it’s avascular necrosis where the ankle didn’t get its needed increased blood supply, possibly during a growth spurt, caused by the steroids. The MRI will be definitive and it’s treatable. They’d planned on sending him to Endocrinology for some growth tests to see if he’d missed out on any growth and they could stimulate that with growth hormones. The ankle could be treated by drilling small holes in the ankle which would stimulate blood flow. At least they aren’t drilling any more holes in his head.

Caught something

2005-05-31T06:47:00.000-04:00

As critical as immune suppression is to ensuring engraftment for Josh's bone marrow, the down side is susceptibility to every little bug. Especially since his newly imprinted immune system hasn’t built up any immunity to anything yet. That takes exposure. Given that, Josh has been incredibly healthy, but yesterday he started the day feeling a little nauseous and was running a little low grade fever off and on through the day. As these things have a tendency to do, he woke us at 1:30 this morning with a fever of 101.5 and climbing and was vomiting. After calling the on-call oncologist, Bonnie took him down to Children’s and they’re settled in down there. They’ve hooked up an IV and will run some labs, but I’m pretty sure it’s just a bug and it will have to run its course.

Thursday's check-up checks out

2005-05-27T15:24:00.000-04:00

“Josh is a 15-year old, white male with AML (M5) in 3rd complete remission status post matched unrelated donor transplant on 11/19/04. Routine follow up visit. Josh’s transplant occurred on 11/19/04 after conditioning therapy which was reduced intensity consisting of busulfan, fludarabine and total lymphoid irradiation. His donor was a male donor who was a one-antigen mismatch. Josh developed graft-versus-host disease (GVHD) of the skin and GI tract post transplant. It was steroid refractory. He did not tolerate Cellcept secondary to GI toxicity. Steroids and Enbrel were added for the treatment of GVHD. He has been off Enbrel since 2/15/04 and he has been off of Medrol since 4/4/05. He remains on Tacrolimus. He was also supported by parenteral nutrition which he has been of for a month and a half. He developed hyperglycemia secondary to steroids which improved once the steroids were tapered, but he is still requiring some insulin. He did develop poor marrow function secondary to medications as well as intralipids and that has also improved. He has a recent history, approximately a month ago, of staph epi bacteremia.”

At least that’s what Laurie said about his May 2nd visit. That’s one of the reasons we’re going to miss her. She’s thorough and follows through on everything. Stephanie seems to be just as good. Josh and Bonnie like her. His check up yesterday was good.
During the last 10-12 days his blood sugar only spiked over 200 one time. Stephanie thinks we can discontinue the Lantus and see how he does with no insulin, only giving an adjustment dose if he goes over 250, testing three times per day. We’re calling endocrinology and checking with them. Sounds good to me.

We’re going to have to wean his body off the Tacro and, like the steroids, it could take 4-6 weeks. We reduced the dose for the next two weeks. We’ll reduce it again following the next checkup until he’s off it and it’s out of his system. Then we should be clear to stop taking the Keppra. That little cup of pills each morning and evening is getting smaller and smaller.

The intestinal rotavirus appears to have cleared up. He has no symptoms and is eating okay, just not eating quite enough. He lost a couple of pounds.

His rash, though present, is faint and doesn’t bother him. It’s just about gone and the flare-ups and mild.

The Varicella in his right eye has cleared up and he’s not using the steroid drops any more. That’s something we’ll continue to monitor, as it’s something which can flare up from time to time.

His ankle has continued to be sore, sporadically, but it has been bothering him for about four weeks. Stephanie is scheduling an MRI and we’ll have to get to the bottom of that. Can you say, “secondary effects?” I hope not.

It’s hard to believe how far he’s come this last six months. Follow up in two weeks for a physical exam and laboratory studies.

Time...

2005-05-25T06:51:00.000-04:00

… sure moves differently when you drop the hospital and re-join society. It also strikes me as odd how stress manifests itself once the stressors are removed or relaxed. My stomach has been giving me fits lately. Sometimes it feels like you can just feel the acid pumping into it. When we were in the hospital routine and life revolved around putting one step in front of the other, there wasn’t time to let stressors bother me. Now, with steady improvement and time on our hands, all the stress of the last year and a half hits all at once.

And time certainly fills up all the empty spaces. We’ve lots of catching up to do. Yet, I’m not always ready to be sociable. I’m still processing things and, probably, still a little numb.

Josh goes in for his bi-weekly tomorrow, moved up from Monday since it’s a holiday. It wasn’t as hard waiting two weeks this time as it was the first time. Primarily because Josh is doing so well. His physical therapy Monday was great and his stamina is improving. Except his stamina for school. I’m afraid getting up in the morning is going to take some time to adjust to.

Last week Josh was six months post-transplant. That’s twice as long as his first (autologous) transplant lasted. And all signs continue to be that the transplant is a success. His diet is good and the only graft versus host that is evident is a mild skin rash that comes and goes. I’ll post after his check-up tomorrow.

A little overdue, am I?

2005-05-16T19:58:00.000-04:00

I suppose I am. We're all busy re-adjusting to 'normal' life. So, Josh went two weeks between appointments, but here's a two-week recap.

Tuesday May 3, 2005

Josh stayed home from school the day after his check-up Monday (May 3rd). He was just too whipped for school. He had a great check-up though. His counts are looking really good. He's been having some nausea, usually in the morning. He lost his lunch at the clinic, though. It usually will pass if he sits still for a few minutes. Laurie thinks it's probably from the meds but they haven't changed in forever except reducing the dosage on a few of them.

Speaking of Laurie, we saw her for the last time yesterday. Her bags are packed and she’s off to Arizona. God speed, Laurie. You were an anchor for us.

So Josh’s appointment was his first with the new nurse practitioner, Stephanie, who has come over from the adult clinic until they hire for pediatric hem-onc. Bonnie and Josh both liked her.

The doctor nixed Josh doing Driver's Ed. for May. Said we'd re-visit it next month, but not real optimistic. I can't believe he's ready for that anyway. Or maybe I’m not ready. He sure is, though, chafing at the bit. He doesn't always have the energy to get out and about in general yet, so driving seems like it would be a bit much, especially since it will be 8 a.m., Monday-Thursday. Well, a month can make a lot of difference and there's always June, July or August. Once he starts school in September it will be too much and too far to support the logistics.

Sunday May 8, 2005

Josh and Aaron (friend from two doors down) went to the dress rehearsal Wednesday night for the comedy Bonnie’s been rehearsing at community theater. They gave it two 15 year old thumbs up. Josh is doing better with school. He went Thursday and Friday last week. He tried to stay all day Friday, but called for pickup at 2:30 p.m.

He's had a little high blood pressure, just a little elevated, so we're checking/charting twice per day and they're watching the labs. Any indicators and they'll run tests. Overall he seems good. His nausea has been better.

Monday May 16, 2005

Wow, it’s been too weeks between check-ups. Is he pleased with himself? Sometimes, unbearably so. His counts are great. The doctors are very happy. He can immediately stop taking the pancreas enzymes with meals. He can stop taking Voriconazole (an anti-fungal) after this scrip is used up. They thought that once he's off that they might start to taper him off the Tacrolimus (an immune suppressant). We’ll have to watch for a recurrence of the GVHD once he’s off the immune suppressants, but we’ll also be watching to see how his immune system can handle what’s thrown at it. Training wheels are coming off.

He's been cleared for driver's training in June. Look out world. He starts June 6th, Monday through Thursday for three weeks.

We can have plants in the house again. He just can't mow the lawn or plant the rest of this year. (I smell a payoff there, Josh).

Stephanie thought his diabetes is improving. Thought we could just give him a shot of the Lantus in the a.m. and forego the adjustment doses with meals and see how that goes for a couple of weeks. Warned there might be a spike as his body adjusts, but... it could be clearing up. We just have to confer with endocrinology before we make any changes. Call first thing in the morning.

Catch-up

2005-04-28T06:47:00.000-04:00

Josh is getting to be more like Josh, joshing around. He likes to push things, though, whether diet or going places/over-doing it.

PT is still going well. He needs to work on flexibility in his joints as they’re really stiff and limit his mobility. His ankles and shoulders are quite bad. He still has a little rash on his body. He’s added ice cream to his diet and has had some diarrhea after yet he doesn't want to give up the ice cream. Aside from that, the only foods he's still supposed to avoid are fried foods/grease. That's for his gall bladder though, not GVHD. I’m afraid he won't be able to do anything about the gall bladder for quite a while.

Josh had an appointment at the clinic Monday. He is going to continue to go to the Children’s Oncology Clinic, but Dr. U from the adult clinic will come over to see him. He will still have the staff support at Children's. They are hiring a new Nurse Practitioner to replace Laurie. I’m sure that will take quite a while, but an NP from the adult clinic will be working there until the replace her. Laurie said she's comfortable leaving because he's out of the woods. His counts continue to improve.
Josh had a full day Tuesday that turned out to be a bit too much for him. He went to school all morning and the doctor in the afternoon. He got a little rest and homework before dinner then went to teen night at the church. It was a really busy day, but when he feels good, he pushes. Psychologically, it’s a huge boost to his morale.

I keep telling him that stamina is just around the corner. Of course, he’s got to push himself a little to build stamina.

Back to school !?!

2005-04-22T06:34:00.000-04:00

Josh went back to school Wednesday. Half-day. Bonnie dropped him at 8:15 and he stayed through lunch. I guess he did a show and tell. I’d have liked to be a fly on the wall. He’s got a lot to show and tell. It was exciting, delighting, dramatic, ecstatic. Funny and happy and …

It kicked his butt. I think he got through it on adrenaline and then the adrenaline let-down just left him wiped out that night and most of Thursday. His spirit is oh, so willing; but the flesh--hasn’t developed the stamina yet. I think the half-day is a good start, but only on an every other day basis as he just needs a day to recover right now. As it is, he’s got an appointment for a follow-up at the eye clinic today and the onco clinic on Monday, so it will be Tuesday before he goes back again.

He did get up about 11 a.m. yesterday and go to physical therapy and then rested again in the afternoon. He did some homework in the afternoon and was feeling a little better by the evening. He’s getting there.

Finally

2005-04-19T06:37:00.000-04:00

The lilacs have some buds and other flowers are pushing up through the soil. The fertilizer is down and we’re waiting on rain. The weather has been beautiful and I suppose a late spring is better than no spring at all. It’s been a long, hard winter. I’m ready.

It never ceases to amaze me that anyone can deny the hand of God in sustaining and renewing nature as you watch the earth renewing itself. The laws of nature are just too reliable to be random. Everything is too perfect; nature on her own could not design, nor perpetuate, anything so marvelous.

So, we spring into new life, renewed life. Out of the blue Laurie suggested Josh could go back to school, at least part time. It surprised us all since all along she’s said it would be a year post-transplant before we could consider that. She feels his system has recovered enough. His counts have been a little on the low side of normal, but stable for a several weeks.

Hopefully we’re past the brunt of the flu season. He’s still immune-suppressed and they aren’t talking about stopping those drugs yet. His rash is a lot better, but they’re leaning toward it being a mild graft versus host reaction now. It is responding to the topical cortisone; better, but not going away. His sore/achy feeling has cleared up so that probably was the steroids.

Any day he’s done a lot has been followed by a day he’s been just wiped out, so I’m not sure how he’ll hold up with the excitement of returning to normal. He is excited though. We’ll start slow, attending school for a half day and leaving after lunch. He’ll just jump into most of his courses where they are now and he’ll still have to work through the summer to get up to speed in math, etc. Of course he’ll still miss school the day of his weekly clinic appointment. He’s excited.

I’m sure we’ll experience some setbacks along the way, but just being part of things is going to be a huge psychological boost. And to all his teachers, I’M SORRY. I know how disruptive this is.

Okay!

2005-04-13T14:23:00.000-04:00

Josh was a little lethargic last week and his rash was spreading, but no fever. We called once to talk about him coming in for a checkup, but talked Laurie out of it. He really didn’t want to go down there. I think he was half afraid he’d be admitted if we did. By Friday we’d decided he was a tad bit better and stuck it out. It’s great that he only needs to go in for once a week checkups, but it’s hard to make the transition without worry.

It’s sure great having him completely off the steroids. The puffy face is slowly returning to its normal proportions and he looks more like Josh. We’ve been attacking his rash with a mix of Cortisone and Eucerin. It’s proved to be effective. The rash has cleared up on his face, but it moved down to his back, arms and chest. We started applying the Cortisone there and it moved down his legs. We’re continuing to chase it on down, I assume until we push it out his toes and are done with it.

He’s continued to be sore and achy, but Laurie thought that was most likely from the steroids and it seems to be improving. Gradually, he’s showing more of the old spirit and sense of humor as he lives with less pain.

His morning shot of insulin is down to 5 units this week. Now if he’d only start eating better maybe we’d have a better idea if his diabetes is going to clear up or not. One thing about the steroids, he was always hungry. Now it’s a struggle to get three squares in him a day.

The accelerated heart rate has slowed down from the 130-150 range (resting) to 90-110 so whatever was causing that is clearing up. So you see, everything is okay—and getting better.

...or not GVHD?

2005-04-06T06:25:00.000-04:00

At least two out of three doctors think the rash is not GVHD. And they’re the two we know and trust. It’s spreading daily, but we’ve been applying 1% cortisone mixed in a jar of Eucerin and that seems to be helping. Josh says the rash itches a bit, but not too bad.

On the one hand, his blood counts were all up on Monday and they completely stopped his Medrol (steroids). It was a huge relief to get him off of those, though it will take about a month for them to get completely out of his system. I was really afraid they were going to say the rash was GVHD and throw him back on a high dose of Medrol. His blood sugar has been pretty good lately, too. We’ve reduced his morning shot of insulin, first down to 15 units and starting yesterday, down to 10 units. They hope to stop the insulin injections by next week and then he’d only need to use the sliding scale to determine how much he needs for a corrective dose and to adjust for the carbohydrates he eats.

On the other hand, our main concern is that his heart rate is accelerated again and his breathing is a little labored. He continues to have a pretty deep cough and has been tired and achy. It’s been a week and the cold should be a little better, don’t you think.

But Laurie was happy with his checkup this week and said he doesn’t have to come in until next Monday. I’m good with that.

GVH Disease?

2005-04-04T06:44:00.000-04:00

Again? I certainly hope not. But Josh has a rash which looks like it could be. Laurie looked at it Friday and said to call if it got worse. She thinks it could be GVHD, but is leaning towards a viral infection. All on top of a miserable cold. Josh’s cold is getting better, but the cough is moving down into his chest and sounds horrible. And he’s felt just plain awful for about a week now.

His rash is bright red and covers most of his face when he wakes in the morning but seems to clear up a lot during the day. By Sunday, though, it was spreading to his back and chest so we called Laurie. Josh, of course, arguing for the “Don’t make me come in today” option. So he’s going in first thing this morning and Laurie will biopsy a section of skin and we’ll see what we’re dealing with and how to treat it.

A skin rash is the most common manifestation of graft versus host and can flare up for several years after a transplant. I just hope that’s the only manifestation. His gut seems fine. The cold has knocked his appetite down a notch, but he’s still eating and not having any trouble with digestion, etc. so it seems it’s probably not in his digestive track. At least not yet.

Spring? Finally!

2005-03-30T06:38:00.000-05:00

Birds were singing in the woods when I took the dogs out this morning. It’s the first time I’ve heard them this year and it was nice. There was a bright, red sunrise in my rear view mirror while I drove in to work. There has been a little ambient light each morning for my drive in, but this was the first time the sun has peeked over the horizon. Maybe spring really is just around the corner. We’ve had two consecutive nice days for the first time in six months.

This winter has been hard. Long, hard and bitter cold. I’ve felt pretty well drained for a while now and have been looking forward to Easter and spring. Easter passed last weekend without emotion or excitement, maybe because spring is still not fully arrived with its promise of renewal. Or maybe it’s because I’m having trouble shaking off this torpidity and inertia in my soul.

It’s been especially hard helplessly watching Josh suffer. Although there was always risk and dangers at each stage of his recovery, I haven’t felt his life was threatened at any point in the last six months. I haven’t felt despair at any point, there has always been hope and I’ve been confident he’d fully recover. But it’s been hard and I’ve been looking to spring as the time he’d be back on his feet and truly moving forward. Looking back, I can see he’s been moving forward all winter. Progress was slow, but steady, with a minor setback here or there. It’s hard to accept that he still has so far to go. But progress is far more visible now.

He had a good checkup yesterday, but failed to report back with answers to a couple of questions I’d had, so I sent Laurie a note. Josh has cheated a bit with his diet and gotten away with it. He seems to be able to tolerate about anything so he craves to try other prohibited items, particularly fried foods. Laurie’s response is excerpted below and it helped my perspective of how well he’s really doing and cheered me.

“I would still try to avoid deep fried foods such as curly fries and fried chicken - Josh has gallstones and it wouldn't be great if he had to have it out right now. I would first start with increasing the fat in his diet in other ways and see if he tolerates it. If he is tolerating chocolate then gradually increase the amounts, same with the whole grains- try a little and gradually increase it.

“I still think that his marrow is recovering. The hemoglobin is stable but he is making early red blood cells and the platelets are holding. I wouldn't be surprised to see them going back up soon. His marrow was definitely stressed. We may want to do some vitamin levels when he comes back to see if he needs vitamin supplements.

“I'm not at all surprised that he is still tired. His body has been through a lot and needs time to heal. He most likely picked up a virus with the cold symptoms but his chest was clear. Viral cultures are pending. His CMV antigen test is still negative. Overall I'm very happy with his progress.”

So maybe spring really is just around the corner. There are still no buds on the trees, but the snow has melted and there isn’t any snow in the forecast until Saturday. And next Monday is opening day for the Tigers. Play ball!

A week at home

2005-03-28T14:19:00.000-05:00

Josh wasn’t exactly pinging off the walls this week, but it was certainly nice being home. His counts held steady at his Thursday check-up and nothing had grown in his cultures so they said to discontinue the Vancomycin after Saturday night’s dose. So we’re done with that. He’s just getting one liter of a sodium drip over four hours each day, slowly, due to the much smaller diameter of his PICC line. I hope his labs this week will be better and we’ll be able to stop the drip and pull the PICC.

The kid didn't feel too hot off and on over the weekend. His temperature was flirting with 99, up and down, but it never peaked high enough to trigger any alarms. We’ll just continue to monitor it.

Josh is finally getting back to physical therapy today. That last ten days in the hospital turned into two weeks of inactivity again.

Josh had friends over Friday to watch basketball. March madness at its best. That was good for him but I think it wore him out. He slept a lot the next day.

Laurie, Josh's Nurse Practitioner, has been on vacation in Arizona interviewing for a position out there. We're really going to miss her. It will be terrible to lose her. She’s been a real gem and has such a great relationship with Josh. She should have about another month to tidy up her affairs here and will be sure Josh is in good hands before she leaves. She's recommended we transfer him over to the adult clinic. Those are the doctors who did Josh’s transplant and they probably know him best. The down side is we might lose the children's consults; i.e., nephrology, cardiology, and endocrinology. We don't know if we'd have to consult with adult departments or continue with the consults we have on-going since they’re actively involved. Laurie will help, I’m sure. She's indicated she’s pretty confident he's on the mend and is feeling pretty good about how he's doing. I think in a lot of ways, Josh would be more comfortable in the adult clinic.

Heading home

2005-03-21T14:59:00.000-05:00

They finally got Josh in to surgery about 5 p.m. last Friday and they pulled out his central line. I just hope the infection was localized and it all came out with it. They were fitting him in to their surgery schedule so they wouldn’t let him eat all day until after the surgery. When we got him back up to his room he was starving and made short work of a Wendy’s double while we unpacked and settled in for the weekend.

Josh’s blood counts were pretty stable through the weekend and his peripheral blood cultures from Friday haven’t grown anything, so hopefully the infection was localized in the line and he’ll be out of the woods.

Josh went back down to surgery this morning at 10 a.m. and they inserted a double-lumen PIC line in his arm. His counts all increased today and nothing has grown in the culture so he’s being discharged to home care. We’ll just have to do his antibiotics via IV twice a day.

They’ve reduced his Medrol (steroids) to once a day and plan to reduce to every other day next week, and then he’s finished with them. His blood sugar seems to be leveling off with his insulin and that may be improving as he gets off the Medrol. I hope. All his other labs seem to be doing better. They just have him taking oral magnesium and calcium supplements. Everything else is looking pretty good. Time to get him back on his Physical Therapy program once he gets home. Well, maybe not tonight, but tomorrow for sure.

Then again...

2005-03-18T12:11:00.000-05:00

Maybe we’ll just pull the line this afternoon and spend the weekend in the hospital while the cultures grow. Then maybe we can get the PIC line on Monday or Tuesday. Once the peripheral cultures come back we’ll know how they want to proceed in treating this.

Once Dr. R looked at it today, he was insistent that we get the line out. If it hasn’t spread to his blood yet we don’t want to give it any more time nor have a chance to. This is obviously not responding as it should to the Vancomycin. They’re arranging for surgery to pull his line now and they’ll start an IV once he’s in the room.

Persistence

2005-03-18T11:17:00.000-05:00

Oh, if we only had the persistence of some of these bacteria. They re-sampled his line and drew peripheral cultures today. They wanted to re-admit him and pull the line, start a direct line and continue the Vancomycin via IV while we wait for the cultures to grow. But Josh is also persistent. They agreed he could spend the weekend at home on Vancomycin through his port as long as he comes in immediately if he presents any symptoms.

The initial samples when he was admitted last week were only from the line and when they discovered the mistake on Monday, Josh talked them into only re-sampling the line so no peripheral cultures were drawn. As long as this is only in his line, that’s okay, but they are concerned about it being in his system. He’s not symptomatic right now, so it’s a minimal risk. If it gets into his system, the infection could get into his organs and, potentially, be life-threatening. So we’ll watch the cultures over the next 48 hours and return Monday, going into the hospital if he presents any symptoms.

Hopefully nothing will grow from the culture from his vein. Regardless, they will pull the line next week. If his peripheral culture hasn’t returned anything, they’ll arrange to pull it out-patient and will probably continue the Vancomycin through a new PIC line. If he does grow something from the peripheral sample we’ll probably have to be admitted where they can monitor him very closely while they treat it.

I may find Josh a little antsy this weekend. I will be. But at least we’ll be home.

Okay, you can go home...

2005-03-17T21:55:00.000-05:00

…or maybe not. Josh’s labs have been looking pretty good and he’s off the TPN. They started to discharge him yesterday, but decided to take another day to monitor him on the oral magnesium he’s going home on to ensure he’s absorbing it properly and not having any stomach problems with it. So, we unpacked and stayed one more night.

So today he was discharged. Home care instructions are for one liter of IV fluids once a day and 600 mg of Vancomycin twice each day. That should do it, right? He got home and was feeling pretty good. Played a little X-Box, a little GameCube, had a snack, ate dinner and watched a little basketball and marked his bracket.

About 8 p.m. the resident from the hospital called. The blood they drew Monday morning from his line had just come back with another gram positive stain. They wanted him to come back in. We balked. She didn’t know Josh had been discharged with antibiotics (couldn’t read the discharge instruction sheet). Josh showed no fever and was on Vanco, so she called the Fellow from Hem-Onc and they agreed we were okay to stay home, returning to the clinic tomorrow morning. We’ll page her and go in if Josh starts a fever or doesn’t feel good.

I suppose now that tomorrow we’ll be drawing another culture and they’ll be debating whether or not to pull his line.

Too much going on

2005-03-14T21:08:00.000-05:00

The cytogenetics are back from Josh's bone marrow aspiration.

Normal!

I like that word. Dr. S at the Hem-Onc clinic was very happy about how the marrow looked last week and getting the cytogenetics back is icing on the cake.

Josh looked and felt better this afternoon. Taking a shower still tired him, but he was better rested and more alert and conversational. More Josh.

Laurie came by as Bonnie was leaving and seemed pretty sure that Josh will not be discharged as quickly as we had hoped. His hemoglobin, red cells and platelets are still low - a normal reaction to fighting off an infection and looking back on how he felt most of last week, this one had been brewing for a while. As long as he's in for this we'll be staying in the hospital where they can monitor his labs and work with nephrology and endocrinology to level out his sodium and mineral levels and blood sugar.

He is off TPN now. They made the decision to stop that today.

Of course these are all concerns and it’s great to have everyone pulling together to get this all corrected and stable for him, but the biggest concern is a little more immediate and less of a long-term concern. They are pretty sure he’s still going to need his central line for at least several more weeks and if this latest line infection doesn’t clear up with the antibiotics it might need to be pulled. They wouldn’t want to insert another central line, so he’d be dependent on a pick line to fill the gap.

For now, though, I’ll be content to sit here watching “Whose Line Is It, Anyway” and listen to him laughing.

Sunday at Children's

2005-03-14T06:43:00.001-05:00

Sunday was mostly just waiting on labs. They're working really hard at monitoring his blood sugar. Ketones were showing up in urine so they adjusted the sliding scale for his insulin to adjust for that.

Nothing new growing in the cultures but they took new cultures Sunday morning and want to watch that for 48 hours before he's released.

Cardiology wanted a 24 hour heart monitor on him to get a readout of his resting heart rate over a period of time but it's been better since he's been in so they canceled it. It's still high, in the 80s and 90s but they don't think there is any damage to his heart. It does still jump into the low 100s occasionally but they said it was strong and regular and some of the fluid around it should resolve once he's off the steroids and TPN.

We're almost done with the steroids, hopefully by the end of the week, but they said it could take a couple of months for that to clear his system so he'll still be 'puffy' for another couple of months.

One good thing from endocrinology was that they aren't convinced that the diabetes will be permanent. They said that it can take months to resolve after he's off all that. It was good to hear after Laurie thinking it should have begun to resolve already. He carries enough risk of long-term damage from chemos and increased risk for secondary cancers. I really hope his major organs pull through this in tact. I'm sure they've suffered enough that they'll be subject to something else down the road, no need to start early.

Hospital weekend

2005-03-12T20:19:00.000-05:00

We weren’t looking to spend the weekend in the hospital but while we’re here we’re certainly making the most of it. Josh had a fever spike up to 103 while he was on an IV at the clinic yesterday. They suspected a line infection so they took some cultures, one from each line and one from the vein. They gave him a first dose of antibiotics and arranged accommodations for the weekend. He didn’t feel too well Thursday night either. His temperature went up to 99 once, but it came back down. I thought he might have a cold or the flu. As always, Josh had his priorities straight, while they were fussing over the fever and drawing blood for cultures, he slept.

He was getting settled by about 2 p.m. and had a plethora of specialists; cardiology, endocrinology and nephrology. Amazing how quick we were able to get someone from each specialty to get involved as soon as he was in-patient. Most were scheduled for out-patient appointments next week which we’d already had to wait a week for so something good comes from this.

The first 24 hours turned up an initial gram positive infection in both his line and blood. The initial spread of antibiotics he’s on seem to be targeting the correct bacteria. That would be a first. They’ll continue to grow the cultures and get more specific information on the infection. While they do that, we’ll continue to narrow down our three new specialties.

Nephrology has been consulted in to determine his kidney function is still good. They’re running labs on him while he’s in and monitoring his sodium (which was the first flag we got that there might be a problem), along with his magnesium and potassium levels. His sodium levels seem to be stable, but they’re still watching all of his labs. This could lead to stopping the TPN and just running IV fluids with some minerals to keep his levels stable since his appetite and diet are proving adequate. That wouldn’t have to run as long each day and would make things easier as I’m sure he’s going to be on IV antibiotics when we do get back home and that will entail being hooked up for an additional couple of hours a day.

Cardiology is concerned with his heart. His pulse has been rather rapid for his last couple of checkups and his breathing has been a little labored. He was scheduled for an echo on Monday, but he got an echo and an EKG in his room yesterday afternoon. A couple of cardiologists checked him over. They were a little concerned about the rapid heart rate but said it’s not uncommon given some of his meds. They said the heart was strong with no abnormality but there is some fluid buildup surrounding it and they’re keeping their eye on that. Wouldn’t you know that once he’d had the echo his heart rate has been steadily dropping. It’s still high, but significantly better.

Endocrinology is watching his blood sugars and working with us to get his insulin chart and the carbohydrates in his diet to equalize his blood sugar. His physical therapy and just being up and down at home is good for him, but the last 24 hours in bed have had a noticeable impact on his blood sugar. Diet and exercise are important. He took a pretty good walk around the floor this afternoon, but he’s going to have to be a lot more active to burn off some of that sugar.

Life in Children’s Hospital is not quite the Ritz compared to the service he’s accustomed to in Beaumont and on the transplant ward. We don’t intend for this to be a very long stay in any event.

Quick take

2005-03-09T06:52:00.000-05:00

Laurie called about 7:30 last night. The slides looked good though still hypocellular, about what they expected. Still have a week to wait for the cytogenetics and donor DNA tests.

Josh is sore and bruised from the biopsy, but in good spirits. He and Bonnie have a rae day off today, free of appointments. They plan to sneak out to an early afternoon movie while the theater isn't crowded. I think it will be theraputic for both of them.

In the back of my mind

2005-03-08T06:04:00.000-05:00

That’s where I usually try to keep things. Out of sight. Focus on whatever task is at hand. Don’t worry about it. Compartmentalize. But always there, on my mind.

Josh is 109 days post-transplant today and is going in for a bone marrow aspiration this morning. I woke up at 3 a.m. and didn’t sleep again. Josh was up and dressed at 6 a.m. when I left the house. Bonnie tossed and turned from 3 a.m. on. Of course, none of us are concerned about this.

The thing we want to hear most is that the marrow looks good with no signs of leukemia. We should get that call late tonight or tomorrow. The cytogenetics will take a week to get results back and let us know whether it’s all donor cells and how they’re doing.

We’re still up in the air on what’s causing a lot of the other symptoms Josh is exhibiting. A lot of the decisions on how we’re going to proceed with treatment are going to be made after they get a look at the marrow so we’ll be seeing about that.

Josh’s blood sugars haven’t dropped as the steroid dosage has been reduced so they think his diabetes may be permanent. Type II. Just something to live with. They were surprised that he’d be in the small minority whose diabetes doesn’t resolve when he comes off treatment. I wish I was surprised, but Josh has always been unique. This isn’t definite and we’ll know more as he comes off the TPN and the steroids are finished, but they think his blood sugar should have come down by now.

It’s going to be along week trying not to worry while we wait for answers and information.

Reflections on the week

2005-03-06T16:02:00.000-05:00

Josh’s face is still puffy and was especially pronounced around the neck. They thought that could possibly be due to a blood clot, so they took an ultrasound the other day when he was in for platelets. It turned out he did not have a clot. His blood counts are still a bit wacky so they were just playing it safe.

Last Sunday’s milestone passed without fanfare here. That was the day Josh was 100 days post-transplant. He’s scheduled for a bone marrow aspiration next Tuesday, March 8th. This is protocol for 100 days post-transplant. This will confirm he is still in remission and that the donor cells are still large and in charge. That, of course, is our fervent hope.

Josh continues to progress, slowly but steadily. And we’re slowly getting him off the steroids. We reduced the dose to 8 mg starting Friday, so I’m optimistic that he’ll be through that course of treatment in a couple of more weeks. Then we’ll see how long it will take to get him onto a regular diet and off the TPN. I know we’re all ready to get there, but we’re learning that this healing just won’t be rushed. Lord, teach me patience.

Now!

I find I’ve been giving a bit of thought to providence lately. I would never have picked Michigan as a place to live. There are certainly other states I wouldn’t have chosen either, but I can think of lots of places I’ve liked where I’d rather have settled down after gadding about for 21 years in the Army—all of them south of the Mason-Dixon Line. But doors close and doors open and I believe that God’s providence plays a role in that. It has never been more evident than in our circumstances now. I’m certain that we’d have found the medical treatment we needed for Josh no matter where we settled, but the convergence of my having the work opportunities and support from them, the friends and family support system and medical logistics points to us being in the right place at this time.

Slow...

2005-03-02T06:47:00.000-05:00

I stayed home with Josh Monday and took him to the clinic in the morning for his bi-weekly checkup and his Physical Therapy session at noon. He’s definitely getting stronger.

At the clinic his blood counts are still a little wacky. His whites were down a little (good because they had been elevated) and the reds and hemoglobin were stable, but his platelets were down to 27. He’s bruised all over. The bruises from his tumbles are very dark and spread out but, fortunately, not tender. He’s also got bruises everywhere he’s giving himself injections, both thighs and the stomach. So, we’re keeping an eye on his blood and expect we’ll get platelets this week.

He's real puffy, especially the face and around the ankles. A lot of that is water retention. He's scheduled for a nephrology appointment for March 16th just to ensure his kidneys are functioning properly. They decided to stop a couple of his meds and decreased the fluid in his TPN to see if this is causing some of his problems. His new TPN doesn't have any lipids (fats) and is just two liters which is down from 2.5 liters. We’re just trying to get to the bottom of the way his counts are dropping. The cells don't appear to be leukemia so they aren’t worried about that, but… The main thing is to ensure there's no problem with the kidneys. They think this is a result of the steroids, the TPN, and the Valcyte. That’s why we’ve eliminated the lipids in the TPN and reduced the volume of fluid and we’re going to hold the Valcyte for a while.

His blood cells are 'normal' as in not leukemic. In other words, they are rounded and not the irregular shape you see with leukemia, but they are abnormal in that they are swollen and seem to be swollen. Blood cells are being produced, but are dropping because they are attacking the fat cells. This is a bad definition, but they lost me on this one. Basically, he's not breaking down the fats. We hope to see some improvement after reducing the volume of the TPN and removing the lipids as well as holding the Valcyte. Laurie did caution us that it would be at least a week, maybe two to see results. This "slow" stuff continues to be for the birds

Doctors are still adamant about going slow on the diet, much to Josh’s chagrin. He is introducing new foods but they're all low and no fat. There’s nothing wrong with his appetite right now. I’m assuming that’s a good sign. He has regained a little of his weight, up to 80 pounds now, but a lot of that is water retention.

Josh is doing great at Physical Therapy. He’s managing stairs much better but we still don't let him go up or down unassisted when he has to carry his TPN, etc. Otherwise he's doing great. He's not taking any naps during the day, and doesn't really tire until late in the afternoon when he slows down a little. He's been getting up at 7 - 7:30 a.m. and he doesn't go to bed until after 10 p.m. and is more active.

February 25th

2005-02-25T19:52:00.000-05:00

Happy birthday Cathey. It’s really nice to have a sister who is such a good friend. You’ve been a wonderful help to us and I’m so happy technology has made it so much easier for us to communicate. We won’t mention which decade you and I were born in, but many happy returns my older sibling.

A good week

2005-02-24T21:17:00.000-05:00

Josh is having a pretty good week. He’s certainly feeling better—more energy. He's been getting up pretty early and is keeping busy all day, although he tires in the evening. His checkups on Monday and Thursday were good. They're keeping a watchful eye on his blood counts which are still a tad low, but they’re not too concerned since they consider it pretty normal for the meds and TPN he’s on. They are tapering off more of his meds but still going very slow on the diet and tapering off the TPN.

Although it still seems like slow progress, he definitely appears to be progressing. He hasn’t had any more falls this week and is exercising and keeping pretty busy throughout the day. He has been sore but that’s from working those muscles and it’s paying back dividends. His bruises and bumps from the falls have been a little stiff and sore, too. But they appear to be healing.

The doctors are a little concerned about kidney function right now due to high sodium retention, etc. He’s managing his diabetes real well and the blood sugar is down overall. Mornings are good, then it elevates in the afternoons and evenings (along with the snacks) but it’s never as high as it was. I do expect them to adjust his chart to increase the insulin, though, because it’s still higher than we’d like. They’ve given us some new vitamins for his TPN to help break down and process the fats that they’ve added to the TPN.

His steroids were reduced again at his checkup today, down to 12 mg. and last Friday was the last of the Enbrol. I really hope he’s off them in a couple more weeks.

He added macaroni and cheese to his diet and enjoyed that. The box version, no real cheese. And he really loves these bite-sized, baked tater tots which are his latest favorite snack.

A Saturday scare

2005-02-21T19:30:00.000-05:00

Josh is doing a lot better. He did give us a pretty bad scare Saturday when he took another pretty bad tumble about halfway down the stairs. He rolled down to the bottom. He was still a little bruised from his previous falls and this one left him sprawled out on the floor at the foot of the stairs. He was making his way down with just one hand on the rail and the other carrying his backpack of TPN and his knee just gave out on him again. Bonnie and I both heard him yell as he tumbled and we both came running. A quick inventory revealed a scrape/bruise on his back/side, his left arm was somewhat swollen, a jammed toe which is slightly purple and he had a bump on his head (a new one). None of this would have prompted a tear normally but it scared all of us, Josh most of all. He was just so angry and frustrated at being so weak and unable to control his body. It’s hard to be confident when you can't even trust your own body and he wants to do everything for himself. The biggest scare for all of us, though, was that he might have pulled out his port while he was falling and trying to hold on to the backpack he was hooked up to. Once settled, though, we determined that he’d held the backpack tight enough to prevent it pulling on his line.

The good news is that having started physical therapy, he’s doing his exercises and walking on the treadmill every day and is getting noticeably stronger.

Pilgram's Progress

2005-02-18T15:05:00.000-05:00

Bonnie called from the clinic and they're still waiting on the labs but... Laurie said the swelling in the lymph node had resolved on it's own. So between that and his cells still showing donor DNA I’m a little relieved. Best news, though, is they decided to stop the Enbrol, so he didn’t get the shot today.

The poor kid, though, took a pretty hard fall today. Bonnie dropped him at the front of the hospital so he wouldn't have to walk in from the parking garage. While he was waiting at the elevator to go up to the clinic some kid bumped him and he went down hard on the concrete. He didn't tell Bonnie until later in the clinic. He said the kid's mother felt awful and was real nice and helped him up and he went on up to the clinic.

He was a little sore this morning from yesterday's PT. I think that surprised him. Mostly they evaluated strength and range of motion and of course that offered resistance. The therapist went through the weight exercises with him with 1 lb. weights which were pretty easy for him so I think it really surprised him that it actually could make him sore. His knees were very weak so he has to build up the supporting muscles. His range of motion was surprisingly good, though somewhat limited. His upper body seemed okay but he's still got the shakes from the Tacro levels in his system but his strength was not bad. The therapist made one good point; exercise will be more beneficial as he starts putting on weight to have some fat to convert to muscle so moving ahead with diet is as critical as the PT. Right now there's not any extra fat to convert and the clinic is still taking a 'go slow' policy so we won't have a relapse of the GVHD. I know that’s a good idea, but I'd sure like to progress faster.

One test result

2005-02-18T08:38:00.000-05:00

Got a call from Laurie and one test is back. Josh's cells are all still donor DNA. Hooray.

Speed bumps

2005-02-18T06:32:00.000-05:00

Josh’s exam Tuesday threw a couple of those speed bumps in our path which keep us on our toes. His red cell, hemoglobin and platelet counts have dropped while his white cells and neutrophils are elevated.

Speed bumps = tests; results to come next week. Waiting again. Oh, joy. Our favorite thing. Blood counts could be dropping due to a virus or the meds he's on. They don't think its leukemia because the cells look normal. They're also testing to determine if they're all still donor DNA. It’s possible Josh’s are trying to make a come-back.

Josh is doing a great job with his diabetes. He does his finger prick, checks his blood sugar, calculates his insulin based on his blood sugar and the carbs in what his meal will be then dials his injection with his auto-pen and shoots himself before each meal and before bed. His blood sugar is still staying high, so they prescribed a long acting insulin which he'll inject each morning. We'll see if that gets it down. I've got such a new respect for our friends who are diabetic. It's so all-consuming. It affects every snack/meal, always planning, monitoring and treating yourself.

They reduced the steroids again and tomorrow could be his last shot of Enbrol. Both are primary suspects for most of his symptoms. And he’s out of his oral morphine and is staying pain-free without any pain meds.

Yesterday I took him to his first Physical Therapy appointment. It was mainly evaluation with a little exercise thrown in. He’s got some exercises he can start to do at home and he can walk on the treadmill every day. He kept surpassing everything she expected from him.

Catching up

2005-02-15T06:30:00.000-05:00

Where did the weekend go?

Josh's blood sugar is just whacked. It's been all over the map, from a low of 189 to a high of 946. They've assured us they see this all the time. It's caused by both the TPN and the high dose steroids he's on. They're confident that it will clear up as soon as he's off the TPN and steroids and it won't develop into a full blown case of diabetes. "Rarely," they say, does it go that far. In the meantime, we treat it like diabetes with regular blood sugar tests and insulin when it's high.

Friday night was certainly sleepless. They checked Josh's blood sugar every two hours and he got an insulin shot every time it was high. Saturday morning we slowed that down to checking every six hours. But our plan to go home got squelched because the blood sugar was still whacky and they wanted to monitor it. Sunday morning they were talking about he could go home “If…” If being that we could monitor the blood sugar. So, of course, insurance requires a pre-approval for an Accu-Check (tester) and the insulin and they don’t have week-end hours. I bought one at the pharmacy and got the info we need from the insurance for re-imbursement come Monday morning.

Josh has been great about the finger pricks for the tests and the insulin shots. Mostly, he’s just glad to be at home, at least in the evenings. He and Bonnie spent all day back at the clinic yesterday with more tests and such. Today they’ll be down there all day again, this time for his bi-weekly check-up and then six hours for his monthly infusion of IViG. They’ll both be tired tonight. Thank the Lord (and his instrument, pmh) for his portable DVD player. It’s certainly made the long hours in the waiting rooms and infusion room more bearable. Now if only there were some good movies out he hasn’t already seen.

He’s beginning to get a tad frustrated with the pace of things. He’s certainly better, but he’s still so weak. He’s fallen twice now, as his legs just give out when he tries to get up. Slow and steady is the name of the game and he’s more the hard-charging type. The falls have scared him a little. Thankfully, he starts Physical Therapy this Thursday. His appetite is improving, but his diet is still so restricted he just begs Laurie to add some fat to it at every checkup. So far, no dice. All in good time, my young hero. This too shall pass.

Hospital tonight

2005-02-11T21:53:00.000-05:00

I was worried they'd put Josh back in the hospital today, but Bonnie just called and they're back home. He's had swollen ankles, been weak, puffy around the face, dehydrated and retaining water. Yesterday he started getting an extra IV each day to keep him better hydrated. That's another four hours he’s hooked up to an IV each day, but better than the alternative. His stomach cramping is better so they've decided to begin to taper down the steroids. They reduced his dose from 24 mg twice a day to 20 mg twice a day.

Bonnie got called back. They had left the clinic before his labs came back and when they came in they showed he was critically low on sodium and they were concerned about a seizure. They had to go straight back downtown. They think they'll be able to give him an IV to level it out, but...

Sure enough, he had to be admitted. Laurie thought he could probably go home, but Dr. S wanted to observe him over night and see how his levels were in the morning. So we’re doing this via dial-up at the hospital. The doctors on the BMT unit think he looks fine and are confident he’ll be discharged in the morning. Here’s hoping!

Looking for answers

2005-02-10T21:44:00.000-05:00

It amazes me each night when we hand Josh his cup of pills just how much medication that poor kid is on. And each one of those meds comes with its own little laundry list of benefits, risks and the inevitable side-affects. Along with the puffy skin and physical weakness that are side affects of the steroids he’s taking comes depression and mood swings. Josh’s psychologist can't prescribe meds so we need a psychiatrist to adjust his meds to compensate for the affect the steroids have. Getting him in on short notice is proofing difficult. They warned us he would experience this, but right now he just wants to sleep—avoid reality. The Effexor he's been on is such a low dose I doubt it does him any good at all. We’ve tried to get an appointment for him with several doctors that were recommended but it looks like next week at the earliest.

We're also trying to get his physical therapy coordinated. Laurie wants him in PT three times per week. He's gotten so very weak and that is also from the steroids. So its time to try to get him back in shape and keep his joints from losing range of motion from the steroids, etc. He's been very unsteady lately and the stairs are really hard for him. We need to just slow down and take it a day at a time. I think we expected too much progress getting out of the hospital. I understood what they were saying, but...

PT will probably be good for the depression, too by getting him out and making him feel like he is doing something to get better. It's going to be a long haul, though. I tried to get him out the other day and he didn't want to go. Laurie said he could walk outside. It's cold and he hasn't wanted to try it, but walking would be good for him even it its just a few laps around the house. He does get up and down the stairs several times a day. It helps to have the X-Box in his bedroom and his Game Cube in the basement and we insist he come downstairs to eat dinner with us—usually. He should start walking on the treadmill each night, real slow.

Trauma

2005-02-09T21:17:00.000-05:00

I stayed home with Josh so Bonnie could take a couple of cases today. The transfusion company was delivering new IVs for Josh so I went out to shovel the walk for him while Josh was sleeping. While I was shoveling, Josh got up and he fell. He was yelling and I wasn't in there and it freaked him out pretty bad. He's fine now, no bruising from where he hit his shoulder but I feel like a shit for not being there. He didn't know I was outside because he was sleeping when I went out. He knows that I wouldn't leave him alone—intellectually but, on an emotional level...

And now, the real battle

2005-02-07T06:23:00.000-05:00

Boredom.

He's showing some signs of depression--justifiably. It was nice to get back home and get on his X-box, etc., but you need more than video games and homework to enjoy life. He's really frustrated because of how much he can't do. He does tire quickly and that just reminds him of how weak he is. And of course he can't go out anywhere. Flu season is in full swing and he is going to be immune-suppressed for quite a while yet.

This all goes with the territory. It just doesn't make it any easier for him even though he understands it.

At 5:40 Wednesday morning I was brushing my teeth and getting ready to shave when Josh walked in, carrying his backpack of TPN to go to the bathroom. Just a reminder that, for a change, I’m not alone in the house and life is good.

Josh went in for a checkup Thursday. CBC and labs were good and he got his shot of Enbrol. They're going to have to keep a close eye on his Tacro levels as the Enbrol can affect that. He’s been awfully shaky lately so that may require some tweaking.

We’re monitoring his glucose levels while he’s hooked up to the TPN at night. We’ve started adding insulin to the TPN along with the vitamins and we doubled the insulin after his checkup Thursday.

He told me Wednesday night, "Dad, my legs are stronger today, I didn't have any trouble with the stairs." Of course, he’s not real steady, either. He’s continuing to eat, but is taking it real slow as he continues to have mild to moderate cramping.

Family night

2005-02-02T06:32:00.000-05:00

Nice and quiet. Peaceful. Josh called me while I was driving home. He couldn’t get on line so I had him reset the wireless router. I didn’t get another call so I figured he was checking his mail with no more problems. Sure enough, there he sat at his computer when I got home. He shifted to his beanbag in a bit, enjoying his X-box and a couple of new games.

He came downstairs to open his remaining birthday presents and you could tell he was relishing every moment. He’s going to have to watch those stairs, though. He’s still got a bit to go before he gets his legs built back up for that. But the stairs will be good for him.

He had a piece of fish and some baked french fries for dinner. This, of course, is after he’d had a couple of snacks when he got home. I can’t tell you how good it is to see how much he’s enjoying eating. He got a copy of the GVHD 2 diet before leaving the hospital and it gives him a lot more to choose from--much to his delight.

After dinner we all went down and watched Mr. 3,000. I was prepared for typical Bernie Mac humor but it was far better than that. It’s a great movie. Good baseball movies are, of course, the best movies. This one is great. Sports as a metaphor for life. I think this one is going to replace The Replacements as our favorite cancer movie. Of course you haven’t lived until you’ve sat on the darkened steps to the basement watching your son, newly in his first remission and unbeknownst to him, rewinding the scene in The Replacements where the players are line dancing and singing I Will Survive in the jail while Josh is singing along and working out the steps. I never got line dancing, but I got that. I felt much the same last night whenever I glanced over at Josh. He was always smiling or laughing and more than once we shared those laughs. They say laughter is the best medicine and that it’s good for the soul. You can’t imagine. And our family all had a healthy dose of it last night.

Home today

2005-02-01T14:21:00.000-05:00

Josh felt real good last night. He had no pain throughout the evening and his stools are thickening. He's pretty upbeat.

It never fails. Josh will be horrible for long stretches, but when he decides to mend, boy does he mend.

He definitely feels ready to go home. This long stay was really wearing on him. We’re relieved and pretty happy.

Okay, he’s home now! His medication regimen is comparatively pretty light. He’ll be on TPN with the same calories for twelve hours each day. Actually night. Think 10 p.m. - 10 a.m. That may not be for too long, either, if he continues eating well.
His diet was expanded a little and we can try some new things. I’ll have to look at it when I get home and see what’s added.

His pain meds are minimal. He’s taking Ora-morph on schedule so it stays in his system and he has Roxanol for any pain not managed by that and heat. He is still taking Medrol (the steroids), the immune-suppressants, and his regular maintenance drugs but...a pretty light load compared to what he’s been on. They'll be giving him his bi-weekly shot at his checkups each week. He doesn't have to go back in until Thursday this week.

Lots of progress, huge relief. I hope he has enough energy to enjoy being home but that will build up as he continues to recover. I expect he'll over-do it at first and end up paying for it. When I called a minute ago he was up, up being in his beanbag in front of his X-box. That's a good start.

Better

2005-01-31T06:36:00.000-05:00

Definitely better. Josh ate five bowls of Cheerios Friday. Saturday he had one bowl of Cheerios and four bowls of Rice Krispies. Sunday he continued with the cereal and added two slices of wheat toast with jam. I can’t begin to describe how much we’re all relishing this.

He’s still had some cramping, but the diarrhea is firming up and is only every three of four hours. His pain is not as intense and can usually be managed with his regular pain meds and a hot compress.

Prognosis is to release him to home care Tuesday. I hope we stay on track.

Better, definitely better

2005-01-28T06:38:00.000-05:00

A couple of days ago Josh ate some Jell-o and it caused some cramping. Two nights ago he ate some Cream of Wheat and it was fine. Last night he wanted to know if Cheerios would be okay. His nurse checked and they were on the diet so he munched on a bowl of those. I’m not sure what prompted him to think of Cheerios. I think he really wanted something he could chew. They must have set pretty well with him because an hour later he wanted another bowl. Of course, he got it.

Josh’s pain is diminished. When he has an attack, it’s usually only mild to moderate and responds quickly, well, relatively quickly to medication. He’s off all IV narcotics now. Roxanol is the new oral liquid for pain. It's a morphine derivative and seemed effective when used with the Donnatol. The doctors are talking about going home next week now and I think he’s right on track.

His pain management consult finally came through and after talking with him they recommended heat pads on his belly for the pain and a massage. It sure would have been nice to have all that great advice when he was really hurting. You would think the heat pads would be standard since this is so routine for them post-transplant. At least he’s got one in the room now and it’s available if he has any more attacks. There is nothing like closing the barn door after all the cows have gotten out. His masseuse did call and set up an appointment for him in his room this evening, so lay back and enjoy it, kid.

Josh brought up Mom the other day and we talked a lot about that. He just couldn't fathom how she could live with this for so long. It scared him, so I made sure he understood hers was a long-term illness and what he has and his treatment and future is different. He said he's really been scared of a relapse and that was the first time it came out about what he's been thinking. Now that he’s feeling a little better he seems to be moving past his fears, but it’s good for us to keep in mind that what he’s pondering is more than just his present discomfort or treatment.

Sometimes its hard

2005-01-26T08:33:00.000-05:00

Sometimes it’s hard to write. I try to look at the glass as ‘half-full’ and keep the tone of each update positive. I am positive, but when I read back through a post it depresses me. It has become difficult for me to measure progress, so—I’m just going to have to learn to use a different measurement.

When I’m with Josh he sleeps, plays video games, and—all too often—copes with an acute attack in his intestines. Sometimes we talk about sports or politics (yes, he’s conversant in both) and sometimes we talk about how to manage his pain better. Sometimes I just talk soothingly and stroke his arm and try to calm him while we wait for some narcotic and some relief. Those hours (yes, it runs into hours) are long.

What I’m talking about is perspective. Josh’s, of course, is different than mine. He has to endure the seconds and the minutes when pain makes every minute seem like an hour. And the doctor’s perspective is exponentially different than ours. But when I can pull back enough and look at it objectively, there is a trend of progress, real improvement. It’s hard to notice when you’re too close. You still see the pain, the weakness, the long days. But, when you look at him you can also see that he is visibly stronger. When he’s in pain you realize he’s not receiving anywhere near the amount of narcotics he was just days ago.

The pace is slow and we aren’t accustomed to slow anything. We don’t like to wait. In our society we’ve come to expect even healing to be quicker, faster—immediate. This has been much longer even than any treatment he’s received and we’re impatient. This is internal. This is something foreign trying to adapt. And it is something we don’t treat. The symptoms, we treat. But the disease, the Graft versus Host, has to sort itself out. And we have to wait. The healing has begun. There is no longer any blood in his stool and it’s darker and thicker. He’s ready to try to eat. And last night even the Jell-o was too strong for him. So we wait a day and try again. And then we add something else, but just one bland item each day.

The doctor’s see this as routine. They see it in patient after patient. Half of the patients I talk to who are back in with GVHD have it in their intestinal track. Laurie told us when he started TPN that he’d probably be getting his nutrition through IV for four to eight weeks. It’s been three and now we can see it will probably be at least three to four more while he slowly starts to eat again. And we all struggle to keep this in its proper perspective. It is all progress. He is healing.

Progress???

2005-01-24T17:11:00.000-05:00

Josh was a little better over the weekend. He was only up about four times Friday and Saturday night with just minor cramping. He seemed to sleep pretty well in between times. Sunday, the doctor took him off the pump for his Dilaudid. He can still get an IV push for an acute attack but he doesn’t have it in his system all the time. The plan was to start taking oral (Oramorph) in a liquid, but they couldn’t get that through either pharmacy here at the hospital, so he’s taking it in a pill which is supposed to be time-released. We aren’t sure how much he’s absorbing and how much he’s passing right through, though. He’s had several acute attacks today and has been able to get a push of Dilaudid when he needed it.

The doctors feel like he’s beginning to heal enough to start on clear liquids, Jell-o, chicken broth, etc. Saturday night he tried a fat-free, low sodium chicken broth which went right through him and caused some cramping and diarrhea. He’s set to try some Jell-o tonight and I hope that won’t be as hard on his stomach.

In between attacks, we’ve got the good news. He’s been getting up and taking walks around the floor each day and is moving better. This afternoon he took a long shower then went out for a walk while I changed his sheets. He was up for about 45 minutes and I was really impressed. This ended in an acute attack which was pretty severe. He definitely overdid it. He’s just now waking from ‘sleeping it off.’ All in all I see it as progress.

The doctor was still talking Sunday about sending him home Monday or Tuesday. I haven’t wanted to push it. We've felt that several times they've pushed him out before he was ready and he had to com right back in. This is also a big step psychologically and that might have a lot to do with him "sleeping" so much. He’s not just physically exhausted, but mentally and emotionally as well. While we can see improvement, it’s hard for him to see that when he still generally doesn’t feel good and has so much pain. Understandably, his perspective is a lot better when he’s comfortable.

So today the doctors did their two-week rotation. The doctor who has been on the transplant unit through Josh’s stay rotated to the clinic and another rotated in for his two weeks on the floor. He wants to keep an eye on Josh for a few more days and have him stable and eating a little when we take him home. Most important, though, is that he wants to have a pain management plan that we can administer at home. This has been our major concern as to how we’d manage his pain at home when they haven’t been able to manage it here. He’s still depending on narcotics to manage his pain. Although he’s only getting a quarter of what he was on just days ago, he still requires it to control one of his acute attacks. The oral meds have not been enough to prevent this.

So I’d say he’s beginning to heal—and is a little afraid. And yes, although it is progress, healing is a slow business. They expect him to stay on the IV nutrition for a month or more while he starts—very slowly—to eat again. It’s always hard after a prolonged hospitalization to really believe you’re getting better, especially when you still hurt. What he most fervently wants is hard to accept.

Belated birthday

2005-01-21T13:20:00.000-05:00

Or at least it will be. Josh was in no mood to open presents last night, or to acknowledge birthday greetings. He just couldn’t stand the thought of another birthday in the hospital, so we’ve put it on hold until we’re home and he can celebrate in a reasonable manner. He did open a few gifts, new games which he can use while he’s still there, but I took most of his gifts home and we’ll have a celebration when he gets out.

His pain is still not as severe, but the frequency and volume of diarrhea is up significantly. They’ve stopped his Cellcept to see if that would decrease the diarrhea. He continues to be on no food orally (no cake yesterday) but they’ve bumped his calories in the TPN up to 1,200. I was grateful for that.

No other news today.

Fifteen

2005-01-20T10:34:00.000-05:00

Bonnie reports that Josh’s nurse brought fresh IV flushes and his meds in at 6:30 a.m., complete with big birthday balloons which she tied off to his IV pole and a card. Josh lost it, crying and hugging her; telling her, “Thank you! I can’t believe you remembered my birthday.” She is a sweetie.

His reaction, though, is just a window to what he’s feeling now. It reminded me how hard he’s been taking all this. I’m sure we’ll have more tears tonight. His emotions are pretty raw right now.

His cramping wasn’t as painful throughout the evening last night. No big spikes. And Bonnie said this morning that, though he’s up and rushing to the toilet more frequently, it’s not as painful. Maybe we’re turning the corner here. Let’s hope the next few days will show some real improvement.

Medical update

2005-01-19T10:49:00.000-05:00

Medically everything is the same. The doctors have finally decided the GVHD is not responding to the steroids and started a new treatment yesterday--Enbrel. It's a shot he'll get twice a week on Tuesday / Friday. If the GVHD starts to show some improvement, they'll start to taper him off the steroids. Whereas the steroids act directly on the GVHD, the Enbrel attacks the T-cells that cause the GVHD.

Josh’s pain is still there. It usually spikes real bad twice, maybe three times in a day. We're all getting very frustrated by it. They had him on Oramorph (read Darvon) and Donnatal to try to get him on to oral meds he could go home on, but it seems with the GVHD he's just not absorbing anything through the stomach, so we're back to Dilaudid through the IV on a pump. It looks like we'll be at least another week, or more, in the hospital.

The doctors are pretty concerned about his narcotic effect, being too tranquilized. Between the Dilaudid, Ativan and Benedryl (for the itching) he can get pretty zonked. He cramps any time he has to go to the bathroom, but it's usually just a 2 or a 3 on the pain chart. Then he'll go and get a huge spike to a 7 or so and it doesn't respond to a hit on the pump and usually takes 30-60 minutes for it to abate.
We’ll probably get an idea as to how he’s responding to the new meds after the 2nd dose on Friday. The rotavirus seems to have cleared up judging from the samples over the weekend. The risk of the Enbrel is he'll be very susceptible to bacterial infections which, of course, they'll monitor for closely.

At least his weight has stabilized. He isn’t gaining any weight, but he’s not losing any more.

The problem of pain

2005-01-19T09:49:00.000-05:00

Search on Google on the problem of pain and you instantly get thousands of references. And there are a lot of smart people that have tackled that question along with your usual menagerie of quacks. C. S. Lewis observed that it takes courage to live through suffering. It also takes courage to observe it, especially when the pain is in your child.

Later, the problem will be how to reconcile this with your faith. The problem now is how to endure and what role your faith can play in that. And how can I share that with Josh and how can I help him endure it. How can I help him reconcile what is happening to him with a just and loving God.

The problem with pain is multiplied when it is incessant. I know how miserable it is to suffer abdominal cramping with the flu—for a couple of days. For Josh, this is pushing two weeks of that type of pain compounded by its frequency, every couple of hours throughout the day and night cutting into your sleep, never allowing your body to rest. This is all beginning to wear him down, mentally and emotionally as well as physically. So, we’ve been talking about the mental aspects of pain and Josh has been more receptive than he has in the past.

2 Corinthians 4:8
"We are troubled on every side, yet not distressed; we are perplexed, but not in despair."

Day T + 58

2005-01-16T14:26:00.000-05:00

...and day 10 of this hospital stay. And still it lingers.

The most prominent question being, “What’s causing this pain?” The doctors are comfortable with it being the GVHD and rotavirus and I’m pretty sure they’re right. By all the test results he is improving. But, the more significant question is, “How are we going to manage this pain?” Josh has been having these severe abdominal cramps for over 10 days now and it’s getting old, especially for him. It wears you down when day after day there is no rest or respite and he’s starting to show the signs of wear of sitting on the toilet and cramping every 1 ½ to 2 hours x 24/7.

He started taking Donnatal last night and that is a new analgesic which is supposed to stay in his system longer and provide some long term relief. I really hope it works. The Dilaudid works pretty well when it’s in his system, but if he dozes and doesn’t hit the button for and hour or two it can take three of four hits of it to build it back up to give him some relief and then can take 30 – 40 minutes.

And rotavirus

2005-01-15T14:23:00.000-05:00

The stool sample from the other night has already come back and is positive for rotavirus. So it would appear that is still lingering. They’re still optimistic that it is clearing up, though.

Dr. P read the C-T scan. It still showed some thickening of the walls of the intestines (read GVHD) but overall they looked good. He seemed particularly happy that the scan didn’t show any air in the bowels. I’m not sure why that’s significant, but I’m glad he’s glad.

The doctor continues to be optimistic that he’ll be discharged to home next week. That, of course is contingent on Josh getting off all the narcotics. His pain is still significant and his Diluadid is dispensed via pump at his push of a button and he can’t go home on that.

Cytogenetics

2005-01-13T13:28:00.000-05:00

The PA on the floor was telling me that Laurie had given us the results of the cytogenetics on the bone marrow from last week. Something I guess everybody knew but me, so thanks, Natalie. Everything looks good. The cellular structure is all donor. I couldn't ask for better news.

Josh feels about the same. He still is having quite a bit of pain but, for the most part, is able to manage it with the different narcotics he's on. They've added some tincture of opium which he can drink every three hours and that helps the cramping by relaxing the muscles in the bowels. (This is all just sooo interesting, isn't it). When they bring that in, the whole room smells like Anise and I kind of like that. Josh, on the other hand, says it burns going down and he doesn't care for the taste but it does give him some relief.

The plan is to continue the IViG through tomorrow's dose then re-sample the stool on Friday to see how we're doing.

And GVHD

2005-01-12T06:52:00.000-05:00

Okay, I admit I thought we were probably going to dodge the GVHD when Josh’s cultures came back showing rotavirus and we’d be able to stop one treatment and focus on the other. It just wasn’t meant to be. The pathology from the samples they took from his colonoscopy came back showing GVHD so it’s still a two-front battle. Josh will continue on the immune-suppressant drugs and the steroids and complete the course of oral IViG (there’s an oxymoron for you). The doctor was relatively confident that the IViG would clear up the rotavirus in about a week. It could still take a while to clear up the GVHD and we’ll start to re-introduce foods very cautiously and slowly in about a week. Maybe.

Generally, Josh is gaining a little strength back and they put him on a pump for the Dilaudid to help him manage the pain which, unfortunately, still persists and is pretty debilitating. I would say there is marked improvement, though.

Rotavirus

2005-01-10T20:53:00.000-05:00

Well, Josh has been probed and scoped, isotoped and traced and some of the results are back. And the verdict is—rotavirus, massive rotavirus eating his gut. I wish we would have done the colonoscopy a couple of weeks ago when they first discussed it just before Christmas. But they decided not to pursue that when his fevers broke and he seemed a little better.

So the scope showed a lot of infection in the lower intestines and when they biopsied it, it came back as rotavirus which we’ll treat it with oral IviG for five days. He just tossed off his first dose, about three shot glasses worth. It tastes kind of nasty but, as he said, nothing he can’t handle when it’s just once a day, especially if it starts resolving all this discomfort. The jury is still out on whether there is any GVH active there, but we should get results on that test by tomorrow. Right now it looks unlikely. Once it’s conclusive that there’s no GVH they’ll start to taper off the steroids so they won’t be suppressing any graft versus leukemia effect we might be benefiting from.

Bonnie said he was a trouper all day. So did the nurse. They all agreed it was a long day following a long night of running to the toilet. They started at 9 a.m. and were running all day. They did the isotope trace through the gall bladder first and that took a couple of hours. Then they went down for the scopes. They were just getting back into the room when I got here about 4 p.m. He’s had a pretty good evening, although he did have one more attack. They don’t think it’s caused by the gall bladder, though, based on the isotope trace. That seems to be okay and surgery isn’t going to consider removing it. One doctor did say that rotavirus can cause a lot of pain. I just don’t grasp the localization in the stomach. But, it’s progress.