These photos were taken at the hospital AFTER he got his first GRAM of Prednasone. Life returned to his face within a couple hours after taking that miracle steroid!Ian + Wegeners Granulomatosis
I wrote this to my family on May 4th, the day Ian was admitted to the hospital.
He has been battling some health issues lately. It first started with a really bad winter with viruses flying through our family over and over. Abby ultimately got pneumonia because her system had been hit too repeatedly for it to fight the last sickness. She got over that, then another 2 bugs hit our family, the last being a one day fever. It hit Caleb one day, Eli 2 days after that, then Abby and I. Ian got it last except his hasn't gone away and it's been 2 1/2 weeks since his first fever hit. He's in the hospital right now. I'm home collecting things (getting this email out) before I head back to be with him. He's had a fever every day since his first one, sweats profusely all day, he can't bend his joints (except after Ibuprofin), coughs like his lungs will come out with it, which keeps him up all night (and me), so then he sleeps off and on all day. He's lost weight, has very little appetite (if any at all), and feels constantly dehydrated despite the fluids he's trying to take in. A CAT scan a week ago showed 11 nodules in his lungs. Today they did an x-ray and they are 50% worse. This isn't good. They thought that he had/has "Valley Fever" which is a fungal infection in the lungs that has symptoms that are similar to Tuberculosis. They've been treating him with antifungal medications which take a lot longer to get rid of the problem than a bacterial infection would with antibiotics. They didn't expect his chest x-ray to look WORSE today, which means it probably isn't a fungal infection. SO- they are now treating him with both anti fungals AND antibiotics. But this doesn't answer all the doctors questions. They have him quarantined due to the fact that it could be an infectious disease. He has a few other symptoms, but that's the majority of it. So. They have him on meds and are getting him hydrated through an IV. They will be doing a biopsy on his lungs looking for bacteria, fungus, and cancerous cells (most likely not cancerous). They are also testing for possible infectious diseases. Ian hasn't ever had a broken bone or stitches (other than having his wisdom teeth out and some minor stitches on his finger as a kid) so going under is a bit scary. He is so worn out from his illness these last couple + weeks. I thought I'd let you all know what he's doing/going through and would like to ask that you keep him in your thoughts and prayers.
thanks so much.
Anne-Marie
June 8th, I wrote to my family:
So, I've been saying I would send our family update but just haven't been able to bring myself to sit down and write it. Here it goes.
Ian- First of all, thank you thank you for all your prayers, well wishes, and fasts. I really feel our prayers have been heard over and over and that we've been blessed in so many ways. The most recent one being this last week. Ian completed his chemo treatment of Rituxan on Tuesday May31st. At that time he did his usual blood tests to monitor a number of things, but one main one is his kidney function. Every week, his kidney results were getting worse and worse- the numbers doubling each week. The doctor told Ian that if a particular result goes above 1.0 then he will need to put him on a different chemo treatment called Cytoxin. It's a much harsher chemo and has several harmful side effects. Needless to say, we did NOT NOT NOT want Ian to have to take this medicine. So he did his labs that Tuesday and sure enough, all his tests, minus 1 test, came back. They all had doubled again. The one we were waiting for had to be above 1.0 based on his other results, but we didn't know FOR SURE since it wasn't back yet. These test results get emailed to us practically instantly, but the most important one still wasn't back. Anyway, we waited and waited. Because we didn't get the test result back, we figured the doctor was holding it from us. Friday came and Ian emailed the doctor about what was going on. The doctor looked into it and discovered that the test had NOT been run. So Ian had to go back to the clinic and run ALL the test over again. When I heard that the test had not been run, I just KNEW that was good news. We had been fasting, praying, putting Ian's name in the temple, going to the temple, etc. This was it. So Ian went to get his blood work done again. And sure enough, all his scores had gone down a TON except for the one we missed originally. That one HAD gone above 1.0, but because ALL the other scores had dropped so drastically, the doctor said no to Cytoxin. We are so so happy. I'm sorry that was such a long story. Cytoxin is still an option if things go poorly again, but most likely they won't. The Ritoxin that he has been taking usually takes 4 to 6 weeks to start working. The doctors didn't want to wait it out if Ian's kidneys were getting bad, but now they don't have to. I hope this all makes sense.
Bottom line- we're being watched over. We've had so much help from ward members, family, and friends. It's been so sweet to watch our kids' reactions to all the kindness too. I just had to share with you that little miracle for us. And Ian is getting better. His voice still is very hoarse (has sores on his vocal chords), but his cough is practically gone. If he doesn't slack on taking his steroids 4 times a day, he doesn't have much of any arthritic flare ups. His legs are still weak, but he's been able to do some easy yoga and light walking on the tread mill this week. His sinuses are still really bad including daily nose bleeds, but his mouth sores aren't as bad. He is able to do some work at the computer from home and is finding some comfort in some Wegener's boards on-line. When Ian got home from the hospital he had lost a total of 20 pounds. Unfortunately, his high dose of prednisone (steroid) has a very common side effect of severe hunger. The doctors say he needs to seriously avoid stress so not to worry about what he's eating. :) I tell him now he knows what it feels like to be pregnant or nursing!
One downfall lately is that Abby got a fever today (103) so Ian had to go to his parents house to escape the possibility of getting sick. Fun times! We are all hanging in there even though Abby feels so guilty that she's sick. Poor girl.
We are looking forward to a summer with dad at home, but will be planning lots of local activities that don't involve big crowds (unless I go alone with the kids). We'll also need to wait a while longer before taking dad (Ian) with us. Because his immune system is so low, he really shouldn't be around too many preventable germs.
I am excited to have Abby home for the summer. Then Eli starts kindergarten in the fall. Caleb will start preschool and life is moving so fast. Ayla is just a ray of sunshine. SUCH a happy happy baby. We want to eat her up- we love her babiness so much.
We know we aren't the only ones with "stuff" going on in our lives. We are praying for you all too. We would love to help in any way we can, IF we can! Let us know what's going on with you so we might be able to help in any way.
love to you all!
Anne-Marie
