The following are copies of dated emails I've been sending out since early January. I started with a relatively short list and the list of recipients has grown. This just seemed to be an easier way to keep everyone updated. Feel free to pass this on to anyone who knows us or believes in the power of prayer. Goodness knows, we need it. Thanks, k.

1.11.08
For those of you who don’t know, John has been very sick. It has happened quickly (last 3 days) so many people are unaware. This message is to let everyone know where we are b/c honestly I just cannot repeat this over and over. It worries me and exhausts me and I just cannot. So here goes...

John was diagnosed yesterday with vasculitis. He is in a lot of pain and it is difficult for him to walk. He has blood vessels from his feet to his waist that have exploded under the skin. The Mayo clinic and Johns Hopkins have excellent websites about this if you are so inclined. I have included a simpler version below that is specific to the kind that John has been diagnosed with.

http://www.emedicine.com/derm/topic185.htm

Overview: Vaculitis is a sort of larger condition that can be broken down into about 13 specific types. Of the 13, john has, if you had to choose one, the one you’d want to choose. So that is the good news. The ‘type’ a person has is defined mostly by WHERE the blood vessels have exploded. If they explode behind the eyes, you have the type that causes blindness, etc. Other types include blood clots (stroke/heart attack), gangrene and amputation of the extremities, etc. Luckily, John has been diagnosed with the kind that includes none of that (mostly, but we’ll get to that later) but does include the vessels to explode primarily in the legs.

This type is called ‘hypersensitivity vasculitis’ and can be ‘acute’ (fast and hard hit but one time only) or ‘chronic’ (comes and goes throughout the rest of life). We are not sure yet which he has. Time will tell. This did hit hard and fast so I am hoping for acute. Also, hypersensitivity vasculitis can be small RED pin point types of marks on your legs that ITCH and then fade over time or large PURPLE spots that BURN and never completely go away. (note: red and itch = goes away, purple and burn = stays.) ...Of course, John’s are red AND burn. Hummmm. So, we cannot tell at this point is they will fade or remain until we just wait and see. It may be a long time before we know for sure. It is pretty terrible looking and though cosmetics are a much lesser concern, no one wants their legs all splotched when they’re in shorts or whatever so he is feeling self conscious about that. I keep pointing out that that’s way better than blindness! He agrees.

Hypersensitivity vasculitis is relatively rare (about 14 per one million people per year). It happens primarily in white males in their 30’s. It is not contagious. There is no cure. ‘Treatment’ depends on the type you have. For this kind there seems to be a link with tobacco use but John does not use tobacco of any sort so that really leaves no mechanism to improve the situation besides just plain old time.

Here’s the part we’re still worried about: Hypersensitivity vasculitis can go one of two ways. If the spots remain on the outside of the body only, that is good. It is very painful but the only long term thing you really have to watch for is that the skin stay dry and clean and not lesion or it can turn to gangrene. But other than that the prognosis, while painful and possibly chronic, is good. The other way it can go, however, is internal. If the ‘spots’ (exploded blood vessels) are internal as well, they will impact kidneys, gastrointestinal systems, neurological systems, heart and or lungs. If this is the case, the prognosis is sometimes death. I’m not sure how else to say that. I feel like a business woman doing a presentation and the emotion is out of me. But I just cannot go to that place. So please be patient with me and the way I am choosing to express this to you all. If it is internal, there is no cure. There, I said it. Ok, so, moving on...

So, Monday spots started showing up with pain and burning. Tuesday was swelling. Terrible swelling in the joints (ankles, wrists and jaw) and Wednesday he pretty much lost the ability to walk w/o looking like a 90 year old man. Wednesday we got him in to the doc for blood work. That came back yesterday with the diagnosis. Today we have a doc appt at noon with a specialist to run the tests to see if the condition is in fact internal or not.

So, for those of you who are inclined to pray and have done so, thank you. Prayer is powerful and seems to be working, as he has the ‘best’ kind of vasculitis that you can have if you really must have it at all. So the next thing to pray for is that it stops right where it is and does not go/has not gone internal. Internal can be fatal. Please pray that is not the case.

The doc wanted to admit him into the hospital yesterday even though the specialist couldn’t see him until today but John is stubborn and didn’t want to go. The purpose of admitting him yesterday would have been simply to stop the swelling with intravenous anti-inflammatory steroids but we noticed that when he just stays off his feet the swelling goes down so he talked his doc into letting him stay home last night. The doc stated that the specialist today will most likely admit him for awhile while the internal tests are done. Of course John wants to sleep in his own bed and not have some nurse wake him up to check his vitals every few hours during the night so I’m sure he’ll try and see if the tests can be done on an out patient basis. So we’ll see. That appointment is at noon today.

If the tests come back that the whole condition is external, the next thing I’ll be asking you all to pray for is that his pain is relieved. The burning is terrible and his inability to walk w/o pain is unbearable for someone so young. But let’s just take one prayer at a time shall we. So far so good and one hurdle at a time.

Thank you so much to everyone for support and prayers and well wishes. I will do another mass email after we see what today brings. Friends and family have been helping with meals and the kids and keeping us company and offers of assistance, so me and the kids are all ok and John is as comfortable as he can be at this point. Thanks again,
k

1.12.08
First let me say thank you to everybody who has sent well wishes, prayers, ...and food =). We appreciate it more than you know.

The new doc on Fri confirmed the diagnosis and pretty much everything that we had learned just from doing our own research (good to know there are some reputable websites out there with accurate info on them). He is not being admitted at this time (possibly next week based on test results we are waiting for). The biggest concern is the internal piece; but first things first...

Regarding the external stuff: the ruptured blood vessels will take weeks to heal, will turn a bunch of different colors, and most likely will leave permanent discoloration to some degree. The pain from the vessels rupturing and the severe joint pain will also take weeks to subside. The swelling will take weeks to go down as well. During this time, he is to pretty much stay bed ridden. He gets up here and there but then his body reminds him that things are not normal and he ends up back in bed or on the couch. This makes taking care of the kids or going to work impossible. He has lost two accounts at work b/c the clients aren’t willing to work with his staff, only him. It’s amazing how one illness and less than one week can impact so many areas of life.

He has been put on a medication that will not make the spots he has go away but MAY stop others from occurring. The meds, however, can cause diabetes. So we need to watch him for that. He did not start that med until this morning and unfortunately last night he seemed to suffer another outbreak and thousands of more vessels ruptured so now it’s up to his waist. When they rupture they burn and for reasons the docs don’t understand the burning coincides with extreme joint pain and swelling, so last night was rough. He’s a 6’3” 240 lb man that is usually a pillar of strength. I don’t really recognize him right now.

Possibly still to come: fever, chills, headache. So we watch for that, not that there’s anything that can be done about it. Also, there’s no way to tell if this is acute or chronic except to wait and see. If it comes back throughout his life, each bout will probably be similar to this one as far as what we can expect.

Regarding the internal stuff: So, as I reported before, hypersensitivity vasculitis can take one of two routes, completely external, or external and internal. If it impacts internally, it is the heart, lungs, intestines and/or kidneys that are involved. That is when the prognosis gets very very bad. The doc yesterday ran a bunch of tests. An EKG for the heart, urine screen for the kidneys, eleven tubes of blood for a complete work up, a chest x-ray for the lungs, and stool samples for the intestines. The tests, unfortunately, have to be mailed to New Jersey and take a full week for results. We go back to the doc on Tues but that is just to monitor how he’s doing on those meds that can cause diabetes. It won’t be until between the 19th (his birthday) and the 23rd (Isaiah’s birthday) that we will know if this has impacted his internal systems.

I’m not too worried about his heart or kidneys. No symptoms for heart problems, and blood work from earlier in the week showed his kidneys were functioning normally so that’s good. He has had a weird cough for awhile (lungs) but I’m pretty certain that our house is just 120 years old and I have an aversion to vacuuming and dusting so I’m choosing to chalk it up to that. But the intestine is what is concerning the doc right now. There is blood in his stool which could indicate this has impacted the intestines.

The doc said “90-95% of the time this is not internal”. I said, “if this is internal, what is the treatment?” He didn’t really answer me. He said, “It would depend on what system was impacted. That would be very serious. We would need to handle it at that time”. John said, “My concern is that I have 3 small kids. Can this be fatal?” The doc said, “well, yes, in some instances people have died from this. But 95% percent of the time (then he corrected himself) well, 90 to 95% of the time, internal systems have not been impacted”.

So 90-95% chance he will be ok. It is the blood in the stool that is somewhat freaking me out. But I cannot concentrate on that right now b/c it will be a full week before we know those results and I can drive myself crazy in that long a period. So, one thing at a time.

Thank you all for your prayers. Please keep them coming. I’m praying that the ruptures stop spreading, his pain and swelling lessens, the meds don’t cause diabetes, and his internal tests all come back normal, including the intestines. I will send out an update after the doc visit Tues providing nothing else changes.

I am also sending out a prayer request for my kids. We are trying to keep their routine as normal as possible, which includes basketball and gymnastics and brownies and clarinet and homework and bed times and play dates and the like. It’s a lot but I think it’s important for them to feel secure in a situation that is not. I’m asking visiting friends and family to not talk about details in front of the kids. Not that they’re oblivious to what’s going on. I keep them as updated as I can w/o overloading them with doom and gloom. But I can tell their stress levels are high as indicated by some of their temperaments and lack of patience with those around them. So please say a prayer too that my kids have some sense of comfort and peace.

Thank you again.
k

1.16.08
Hi all.

Thank you all for the enormous amount of support and prayers you’ve shared with us. We are truly blessed to know so many good people and have so many good friends. Everything from cooking to taking the kids to the movies to running errands to, of course, prayers has been truly appreciated.

At this point it is mostly a waiting game.

After last Friday’s Doc visit:
Sat brought vomiting (we don’t know why)
Sun brought ruptured blood vessels up the rest of the body to the chest and arms (it wasn’t supposed to go above the waist)
Mon brought severe itching at the sites of original rupture (ankles and legs. Not sure why. Possible vessels healing?)
Tues brought loss of use of the arms and swelling of the shoulders (temporary, just like when it was in the legs) and an intense ear ache (due to dilated blood vessels).

Went to see the Doc Tuesday.
Half of the tests came back including heart, kidney and lungs. All clear. That is god. Though it was the intestines we were most concerned about. That test is not in yet. Also, half of the blood tests are still outstanding including the one for Lupus (which, honestly, we didn’t know he was even being tested for so that was surprising to hear). The doc has taken John off of his heart medication (he’s been on it since he was very young) to rule out an allergy to his meds. This is concerning because...well, it’s his heart medication! So, for three days we need to watch that. If symptoms persist, then we know it’s not the meds and he can go back on them. (Remember, vasculitis is an allergy or infection to something. His blood work does not show fighting an infection so it’s an allergy to something but 99% of the time there is no way to figure out what it is an allergy to). We go back to the Doc Fri to get the rest of the outstanding tests.

The other part is this, the doctor ordered a cat scan to check for cancer of the lymph nodes in the torso. He ordered it to take place Tues but instead the insurance company decided that they needed more info to approve it. So, we are on hold. Once the test is approved, hopefully tomorrow, they will schedule it for the next day then it takes about 2 days to get results back. I am not sure how to respond to this part. I don’t understand how we’ve moved from a diagnosis of vasculitis to checking for cancer and I was so blown away when he said the word ‘cancer’ and more so when the nurse reported that Blue Cross Blue Shield denied the test that I was in no position to think to ask the question. I also don’t understand why the doc didn’t order the cat scan for a cancer check last Fri, or why he was so concerned to make sure that a Lupus test was completed.
I just cannot seem to go there in my head just yet.
One day at a time.

So, we go back Fri, we watch to make sure not taking his heart meds doesn’t have adverse effects on his heart, we wait to hear back from the insurance company, we pray.
John is on codeine for the joint and ear pain so he has been sleepy a lot today.

I wish I had better news but at least what came back was normal.
Thank you all.
k

1.21.08
I’m not sure what to type, it’s all a blur. I will try to keep it simple.

John has been in the hospital since last Friday.

We went to the doc appt Fri morning at 9 and didn’t come home until 2:30. The cat scan (finally approved by the insurance company) showed swelling in the small intestine and that, combined with the blood in the stool, indicates that the vasculitis has gone after the intestines. Also, there is some protein in the urine, indicating that it has also impacted the kidneys. (For those who don’t know, John was born with a kidney disease so they didn’t need this on top of it). He was admitted due to the codeine no longer managing the pain.

The good news: it does not seem to have impacted the heart or lungs and so far there are no signs of cancer. Also, the blood in the stool is slowly lessening. And the kidneys, although impacted, are functioning pretty normally.

The only ‘treatment’ for vasculitis is steroids to control the joint swelling and intense pain. John was admitted and began intravenous steroids, pain meds, fluids (he was dehydrated b/c he hadn’t eaten or drank anything really for days b/c of he pain in his belly), and anti-nausea meds and put on an all liquid diet to help bring down the swelling in the small intestine. He is now off the anti-nausea meds and the fluids. He is now on a ‘low residue’ diet.

The bad news: Well, there’s much.
The side effects of the steroids have already hit.
A normal insulin level is 80-130 (or something like that) before a meal. John’s levels last night (he had not eaten) were 266. He has begun insulin shots and today must learn how to give himself daily injections. He will be meeting with a nutritionist to learn about a diabetic diet. We believe this is temporary but we do know that all three of the docs that he’s been working with want him on the steroids until about March and that this ‘bout’ of vasculitis will last about that long. So ‘temporary’ is a relative term.
Also, the steroids have raised his blood pressure so he is back on meds for that.
Also, the bloating and weight gain that steroids cause is setting in, as seen in his face and the fact that he is up five pounds in three days. His feet have swollen such that it is painful to walk.
My biggest concern about this is the kids. If he doesn’t look like himself when we visit, that will be very hard on them.
Also, the docs tell us to anticipate this ‘bout’ lasting up to 4 months in total. So, we are looking forward to the Spring.

Long term: After all this is over, in about 3 months or so, he will have a colonoscopy to make sure that the it is the vasculitis that caused the blood in the stool and not something else (doubtful). The vasculitis itself will most likely go away in 2-4 months, but the effects may be lasting. Possibilities include diabetes, renal failure, kidney transplant, dialysis, on and on. At some point I think I shut down to the ‘possibilities’ in my attempt to just take one day at a time. It is also a ‘possibility’ that after he’s off the steroids the insulin works itself out and he just starts living a healthier life style and things can be managed by that. Such extremes...insulin shots or put mustard on your sandwich instead of mayo. Such extremes. Truly, the news goes from doom and gloom to not so bad within just hours...for 12 very long days now. It is quite exhausting. What I do know exists mainly in the present. John’s birthday was Saturday and Isaiah’s is Wed. Not happy times. We are all pretty confused and scared. I believe we will be looking into a referral to Johns Hopkins or at least for our docs to work in conjunction with theirs b/c they have a vasculitis clinic and the docs here seem to just be repeatedly stumped, or going back and forth between extremes.

I’m certain there is a bunch I have neglected to type but honestly I just cannot keep it all in my head. John had some random LARGE goose egg on his head for some reason that no one seems to know. In a matter of 18 hours it just showed up and ballooned and then mysteriously disappeared. The vasculitis ruptures covered his entire body except the chest, neck and face, so I’m kind of waiting for that to happen. His ear ache went away and three days later showed up in the other one (the dilated vessels seem to the the culprit).

John’s condition is pretty close to debilitating on and off. No work, no sleep, no normalcy. He is worried about us since we no longer have his income but more importantly he was the ‘stay at home’ so we have never used a sitter. This has brought new challenges. I am doing as much work from home telecommuting as I can and going in for a few hours here and there for meetings or when necessary. My Board of Directors and staff have been over the top supportive and helpful. Thank you to them. Also, we have wonderful friends who love my kids so they help out with them, love John so they pray, and love me, ...so they cook. Haha. Seriously though, thank you to everyone who has run errands for me, made a meal, bought groceries, watched the kids, folded laundry, gave my dog a bone (literally), returned movies, called in prescriptions, retrieved winter coats left behind at small fry basketball, taken care of things at the office, on and on, and mostly for the prayers. Please keep them coming.

Thanks,
k and family

1.22.08
So the good news is that John is supposed to be discharged today. It’s all happened pretty fast but that’s been the way with this since the beginning so I am learning to go with the flow.

Here’s goes the roller coaster...the vasculitis is both external and internal but has not gone after the heart or lungs. Steroids are the only treatment for the swelling (both external joints and internal small intestine) but they give him diabetes and even higher blood pressure, and bloating. He’s back on his high blood pressure medication so that should control that. The ruptured vessels seem to be slowing down and old ones are fading somewhat. Diabetes should go away after he’s off the steroids in a few months. That random lump on his head is completely gone (big mystery). In the meantime he has to test his sugar levels three times a day and eat accordingly. He has to give himself insulin shots. He has to learn how to use an epi pen. John made the decision to ask for the steroids to be decreased a bit so as to do less damage to the kidneys and have fewer problems with the diabetes. The counter to this is the pain he is in is increased proportionately. Therefore they are upping his pain meds a bit to help with that. The docs all agree that this should be over by the Spring and “probably” won’t happen again (though it could). It will be a long haul until the Spring, as the pain and swelling and meds and spots will continue. He will not be able to work or watch the kids for some time but at least he’ll be able to get some sleep, ...a thing that the hospital seems to keep from him. When all is said and done (in about 3 months) they will run al the tests all over again to make sure there was no permanent damage done, that the small intestines are no longer swollen, and make sure that the blood in the stool was indeed from the vasculitis and not something else.

My only concern about him being discharged this soon is that they really haven’t taught him much about eating as a diabetic. They haven’t taught him how to test his own blood sugar levels yet, or use the epi pen. And he has not yet given himself an insulin shot alone. I will make sure these things happen before he comes home. I’m also nervous that they JUST decreased his steroids last night so to send him home this soon, before we can see how much that steroid decrease will impact swelling and pain, makes me nervous. But the docs say it’s ok and he so desperately wants to leave here and come home to get some sleep that I’m trying to be supportive. Those of you who know me best know that I am a pretty strong advocate and can be politely but staunchly stubborn when need be so I just need to go into the hospital today with that mindset and make sure what needs to happen before discharge actually happens. Tomorrow is Isaiah’s 10th birthday, he will be thrilled to have dad back home.

Thank you all for the prayers. Please keep them coming as this is not over yet but along with time and knowledge it seems to feel less crisis-y. Please pray specifically that we get the knowledge that we need to manage him appropriately at home before they discharge him.
For those who are interested, below is a link to a reader-friendly write up of John’s diagnosis:
Henoch-Schonlein Purpura Hypersensitivity Vasculitis.
Say THAT ten times real fast. Phew.

http://www.aafp.org/afp/980800ap/980800b.html

Love and thanks to all. I will keep you posted.
k

1.31.08
I know that I have not been in touch for almost ten days, and I thank those of you who have asked about how things are going. This is an update as best as I can recall; the last week has been difficult and very much a blur.

John was discharged from the hospital last Tuesday, in time for Isaiah’s birthday on Wed, so that was nice. Unfortunately, that’s about the extent of the good news.

John’s pain and swelling has continued. He continues to be debilitated, unable to work or care for the kids. He is unable to sleep and some days unable to walk for the most part. I am nervous leaving him alone for periods of time.

The vasculitis has impacted his kidneys (protein in the urine) and the intestines (swollen small intestine and blood in the stool still). The wave of broken blood vessels on the surface of the skin backed off a bit, and then an entirely new second round started. This is unheard of. The doctors are stumped and have been working in consultation with a vasculitis dept at Cleveland Clinic. If this last medication did not work (it didn’t) then we will be referred to Cleveland at tomorrow’s doc appt (11:45am). The doc told us to expect a fight with the insurance for approval for the referral, considering the fit they pitched over a simple (and necessary) cat scan (which confirmed the intestinal swelling).

It is ironic b/c the insurance has been so good in other areas. His meds are $300 each and we only pay $40. The bill for his first batch of tests (that day they did the EKG, chest x-ray, 11 viles of blood, urine screen...it seems like a thousand years ago but amazingly it was only about 3 weeks ago. John has been sick for 4 weeks on Tues. It’s just so hard to believe), anyway, that bill came and it was for almost $1400 and we only had to pay $40. Amazing. But they wouldn’t approve the cat scan to rule our lymph cancer? I just don’t understand. I probably never will.

So, there is no cure for what John has and the only treatment is steroids. The steroids make him moody. He is also having a hard time simply accepting that he is r-e-a-l-l-y sick. He keeps thinking he will wake up tomorrow better. The doc’s say that if all goes well he will start to see improvement in the spring and not really be “well” until the summer. I worry that his continued disappointment morning after morning will lead to depression. Depression combined with chronic pain is a dangerous combination. Please pray that he keeps his head above water with the denial and heads off any depression. I need his head in the game, so to speak.

The steroid treatment has created a new situation, diabetes. This is a whole new world for us; something that I never thought I would have to learn about. John has to take his sugar levels 3-4 times a day and give himself insulin shots in the leg and belly. Truly, this is blowing my mind. I have to learn about how to properly dispose of sharps, what makes up a diabetic diet, learn the difference between various kinds of lancets (I didn’t even know what a ‘lancet’ was ten days ago), etc. It’s crazy. The doc says the diabetes should resolve itself about 2-3 months after he’s off the steroids (he’ll be on the steroids for months, we’re not sure how many). The fact that he has been hit with a new round of the vasculitis is throwing off any prediction they had for prognosis. So, on it goes.

The kids are resilient but this is clearly impacting them. Isaiah is the oldest so he ‘gets’ it. He cries with me at night at bedtime. He doesn’t let John see him cry. Mary is just turned 7 so she is aware but less so. Noah is reacting the most, ...hum. I don’t know the word. This has sort of flipped him out so his coping mechanism has been to sort of pretend that it doesn’t exist. The problem is, since the illness is so pervasive, that means he has sort of started pretending that John doesn’t exist. I mean, he’s not mean or anything, ...but he keeps his distance. He doesn’t sit next to John or really talk to him. He’s sort of blocked the whole thing out. And all three kids have had notes sent home form school saying that they are ‘acting distracted’ in class. So, as much as I can try and help them, they are still very worried. The reality is, I am too. I keep moving forward, one day at a time, but that sneaky thought ...”5-10% of the time this is fatal”...keeps creeping up in the back of my head. It’s hard to silence. I know John hears it too.

So, a few days ago we decided to make a list of positives, ...what’s gone right. This is what we came up with...
-I have never had the opportunity to spend so much time with the kids. I knew they were amazing but this is a whole new level.
-He says that in the future when he has clients who are diabetic or in chronic pain, he will better be able to relate to them.
-We knew we had good friends but this has certainly confirmed that for us.
-50% of the people who get this, get it again in the future....BUT 50% do NOT! =)
-So far, there has been no cancer found.
-I finally got a cleaning lady! Ha! After ten years of trying to get him on board...it seems all it took was a little case of hypersensitivity vasculitis and steroid induced diabetes. (Insert nervous laugh here...work with me).
That’s about all we came up with. I’m sure there’s more but it’s hard to find in between all the rest.

So what’s next? The doc appt tomorrow to see about the referral to Cleveland. John’s sister lives about 20 minutes from Cleveland so I imagine that that’s where we’d stay though we haven’t really gotten that far. I have no idea how long a referral takes or how long we’d be there. We’d take the kids with us and they’d have to miss school. The people I work with have been spectacular in helping me with work so that makes telecommuting more possible.

Thank you to everyone who has helped us in so many ways and please continue to pray for healing and hope for John, strength for the kids, for the docs to figure things out and for the insurance company to not pose an obstacle. I will keep you all posted.
Thank you again.
k

2.1.08
Hi all.

John had his doc appt today. Things are not good. He is in the most pain he’s been in all month. They are upping his pain meds one more step and then if that does not work we need to move to morphine. Also, the steroids have been increased, as his swelling has gotten so out of hand that he now cannot walk. He was in a wheelchair today. The swelling is just in his joints. The rest of him is smaller. Despite the steroids (which normally make a person gain weight) John has lost 17 pounds in 10 days. He is eating but just seems to be dropping weight. The doc does not know why but expressed concern over how rapid it’s happening.

Everything else continues without change. The diabetes is a lifestyle we will learn to manage. The vasculitis has spread...again...to his whole body including odd places like the roof of his mouth. They did blood work and urine screen to make sure things are status quo internally. They are. Not worse, but not better.

The doc is now referring us to Cleveland Clinic. We will get a call later today or Monday (there is an ice storm here today so the doc office is closing early) to let us know how the referral went. Please pray that the insurance co approves the referral. Normally a referral takes a few weeks, our doc is requesting that we be seen immediately. He wanted to admit john back into the hospital for the weekend at least so we could get the pain meds and steroids back into him intravenously but John refused. Stubborn stubborn stubborn.

Apparently the doc and his colleagues in Cleveland feel that while this is probably still the right diagnosis (probably), it is an extreme case that is not responding to the steroids. The next step is chemotherapy. No one had ever mentioned that that was even a possibility. I do not even know where to put that in my head right now, so I am not. I am just getting through the weekend to keep him comfortable and wait for the call on Monday to see how the referral went. We revisited the fact that 5-10% of these cases are fatal. I cannot put that in my head right now either. I simply cannot. One day at a time. That is all.

Thanks for your continued support,
k

2.4.08
Crazy crazy weekend...
Noah fever, then a virus settles in his legs and he can’t walk. According to the doc that should clear up by Friday. He says this “isn’t rare”. (really??).
Isaiah gets rammed in the nose at his b-ball game (they won!) and gets a swollen nose and slight shiner under one eye. Then wakes up with Noah’s raging fever. Ugh.
Then Mary rammed her toe into a door and ripped off her big toe nail. Insert squirting blood here. She was a trooper and still shoved it in a shoe and went to school this morning.
So, we have 2 fevers, 2 who can’t walk, a shiner and a jacked up toe. Oh, and coughs all around.
Ha!

Ok, so John, he was referred to the Cleveland Clinic on Friday and accepted on Sunday. The insurance co said they’d approve the referral today, and we leave town tomorrow after the kids (kid?) gets out of school. Appointment is Wed at 11:00. We will be staying with John’s sister. I have no idea how long we’ll be there. I will keep you all posted. Please pray that this is the right move and that these doctors will know something more than the local docs did. Thank you so much for all your support.
k

2.7.08
Have decided to make a blog. Just easier. End of email thread.