I thought I'd posted this September 28th

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

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

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

He is risen

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

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)

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

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

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

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

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

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...

...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?

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

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.