Wednesday, August 31, 2016


My sisters and I had a get together this week. It seemed time for a last hurrah! before the other girls get serious with school stuff and life stuff and the cousins are always begging for play dates. The kids were super excited and played for hours while we discussed gardening, prayer, life, kids and all the good stuff that is so fun to share with people you've known and loved since birth.

Then, not to end the party too soon I brought some home to stay the night and help me eat all the melting popsicles in my not so freezing freezer. They had already eaten all the not-quite-frozen pizzas so I pulled out the Costco box of popsicles, set them on the patio table, and told them to have at it. I heard one cousin exclaim,

"This is the best day ever!" 

It felt that way to me too. I'm kind of sorry to see the end of summer. The leaves have been quietly dropping here and there and the mornings and evenings have that distinctive bite, despite the 70 some degree  afternoons sandwiched between them.  In one of my inspired gardening fits, I bought two blueberry plants. Luckily not for the fruit, because once Fiona noticed there were fleshy orbs that resembled green blueberries and she went to town. But I had bought plants for their fall foliage, described as burning crimson and gold in the fall, so I was not too heartbroken over the stolen fruit.

Then, on another yard inspired day, I decided to treat the weeds in the weed field. It might have been easier to just pluck the few blades of grass and pretend I had always wanted a buttercup and clover farm. But those come with bees, so I got some week killer and while Shane and the kids were at a retirement party- I stayed home with Pippin who was not over his cold-and decided it would be good to get it done while they were away and off the grass.

It was one of those bottles you hook up to the hose and the water dilutes the poison  as it sprays out in a steady stream. No pumping required. It was going pretty well and as there was no wind I was able to carefully avoid the greenery I did want-blueberries, raspberries, and strawberries. And then it happened. The hose was not giving me enough slack to reach the whole yard so I gave it a good tug. Still not enough. So I pulled harder. The hose had snaked itself around my garden boots in all my twisting and turning to reach every last patch of unwelcome greenery. Suddenly, I found myself, flat on my back, the weed spray gushing straight up like a Bellagio show, but not before taking a nice sideswipe of the yard, whose path included the raspberries. strawberries, and one blueberry.

I emptied the bottle on the rest of the yard, then got to the business of removing all the newly poisoned plants. I had Pippin come down and weed-eat the raspberries while I hauled them to the garbage heap. Then pulled up the one blueberry and all the strawberries. I wanted to get the yard remodel done before Shane got back and then I could show him my new plans for the yard, maybe without bringing up the whole hose bit. We didn't get it quite finished. I was more sad than he cared. Then I somehow lost interest in that side of the yard and neglected to water the remaining blueberry, so we are getting an early glimpse of the 'fall glory colors', or 'no one care about me anymore colors'.  But it will be better next year, and the raspberry canes are spreading already, so all is not lost. The strawberries were due to retire this year anyway, so all in all, we only lost the one blueberry.

This week we started the IV steroids. So far nothing too crazy has resulted. But it is really awesome to feel energetic again. I never knew. Shane came with me the first couple days so we got to spend some time each morning while the drugs dripped for a an hour. They said it could increase my appetite, and sure enough, the first day I was starving. After only 10 minutes on it. Then I remembered I hadn't eaten much for breakfast. Shane took me out to lunch after wards, and the metallic taste the medicine had given me only made my water taste like grapefruit juice but everything else was fine.

I did feel a little sleepless that night, then finally took a Benadryl at 1 am. Then woke up at 6. Getting through the day was not a problem and I got more done, in the laundry department, than I had in a while. Which was good , because Malachi, enthusiastic to try no pull-ups at night, peed the bed. Twice. More accurately, he peed TWO beds. His, first. Then he rolled over into Kateri's bed and marked his territory there too. So that was fun. I thought of using the extra energy for a Costco run today, but then realized I have no reliable freezer space. We have a new one coming Saturday, which will be the last day of infusions, so maybe Sunday I'll restock.

I don't' know how long the side effects last, hopefully at least until then. The nurse did say the third day is when it really kicks in, which is today. Maybe I'll add some a weight work out or something. I cut out my Snickers and half-and-half routine. I don't know when the puffer fish effects kick in, but thought I wouldn't give them too much to work with. Another fun item on the side-effects list was 're-distribution of fat deposits.'  So maybe I'll end up with kankles or a pseudo goiter. But I have an extreme weight loss program already set up, in the way of HSCT!!

Monday morning, I woke to an email from Italy saying they are ready to move ahead and can schedule to begin treatment in Florence in January of 2017. Only a year since we first applied.

Then later that day, Rebecca, our nurse in Chicago called, to say insurance got back to her and I am approved for treatment in Chicago!


 No repeat appeals and denials for months. Just a flat out YES! (I'm wondering if the whole Acthar attempt made them re-think the cost benefits of HSCT.

I could hardly believe it. It felt too easy. I get HSCT. In Chicago. I don't have to be out of the country for  three months straight. Won't have to indenture the kids. The kids will get something in their stockings. She sent over some dates, starting Nov 1st. Two weeks, then I   get a break, so home for Thanksgiving. And then back for the last part and done just before Christmas!

(This is the abundance part. FYI).

I feel like I should send out cards with a RIP MS 1991-2016 for my 25th anniversary announcement. (look at that! my math is getting better already!)

A friend at work has been giving Shane some warnings about chemo and the effects on the brain and how some people come out on the other side with personality changes. I'm thinking cool. Maybe I'll come back nice, or something. Or smart. Or humble. But let's not get head of ourselves. I know I ll come back weak, really tired, once the steroid part wears off, most likely really cranky. Much like Fiona's response to everything on a bad day, I'll respond to any suffering with,

 "I hate that one!"

So, lots of opportunities for growth coming up.

 But at this moment, with real hope looming so close by, I feel her good day response of,

"That's my FAVORITE!"

Thank you to everyone for all the support and prayers this past year. Please, keep them coming. We are just getting to the hard work. But we are finally here!

Saturday, August 27, 2016

Planning My Kids' Schoolyear. You. Not Me.

But before we get to that, I would like to note, or everyone else to note, this is my second post. This week. So we can all feel really good about that. And time for a latte break. Just kidding. Given I usually only get a few minutes to throw something up here before mommy duty calls, I'll save the latte til I'm done here.

It seems the school year comes sooner and sooner with each passing year. Fortunately, I've worked on my peer pressure vulnerability til it's become about as numb and impervious to suggestion as my feet. The pictures of other kids posted on Facebook, all lined up in their plaid jumpers and hot sweaters does nothing even remotely to motivate me to grab my lesson planners( mostly because I don't even have those) and start filling out schedules. I admit, the photographs were a helpful reminder to get my paperwork sent in so the school district can't accuse my kids of truancy when they walk to the corner store to grab a sandwich. See? Lunch and P.E. at the same time! Just one of the benefits of homeschooling. The biggest one being not getting everyone dressed and out the door. With shoes on. Their own shoes.  Matching ones. And 50 other societal niceties designed to frustrate parents with multiple children and force them to just stay home. Not that much force would be needed.

Woohoo! Kateri took the  babies to get the mail (after a long and drawn out search for shoes) so I might get a couple extra minutes. Siblings are the best.

So I'll get down to business. As we are still up in the air about a date for starting treatment in Chicago, I'm aiming to keep this year very fluid and agile. Think Agile. For sloths. Changes might come about slower than they should and scrums might look more like idea gathering for who should deliver dinner. But I'm also working on the serenity prayer. Or my version. Start with nothing. Anything beyond that is gravy. Oh good. that helped me decide on a dinner plan. It's working already!

Since all the formal education able kids can read well, we've decided to play go fish with the babies and set out a reading lists for the big kids. As the oldest ones are more capable and are showing interests in more adulty things, we've had some really fun discussions over some of the election issues and candidates. Since all kids start practicing for a law degree at age three, they all enjoy watching debates. In watching debates, the participants who's arguments came across as the most logical, thoughtful, and clear all had one thing in common. They had had a Jesuit education. Seriously. Even as  joke we say someone must have had one. Then we'd look it up. And sure enough. As the Jesuit missionaries went everywhere, there was no country or town that had not been reached by Ignatius's armies. Look it up. It's impressive.

The kids were so impressed they expressed a desire to be as eloquent and knowledgeable as the people they listened to, so I pounced on it. And said, I'll ask around.

It seems no one has written a step by step instruction book on how to give your kids a Jesuit education without leaving your house. Fine. I'll leave my house occasionally. Still no book. Maybe there is and I just have not found it. In the mean time, I thought I'd ask everyone if they had come across such a list, or had made one themselves. Shane and I could come up with some of our own lists, but why not stand on the backs of giants when it's possible.

The internet has made so many things accessible and we are finding it is really helpful to all watch, then discuss lectures/debates/presentations. So suggestions for online resources, or DVD sets etc. would be greatly appreciated. Fr. Spitzer, a Jesuit near and dear to my heart, has most, if not all of his lectures available on-line. So that has been great.

Shane and I had a lot of fun when we spent  a couple weekends watching a Yale professor's history lectures. He was super engaging to watch and I think would be more compelling than just handing a kid the whole shelf of Will Durant's History of Civilization.  Personally, I think the books are great. Some kids felt they were a little dry.  I guess we will have to come up with writing assignments.

I'm positive about making lists of topics for the kids, along with the resources for them to use so they can keep things going on their own when family life gets a little crazy, or we are all in Chicago for Christmas. Not that I know we will be there. At that time. Hopefully we will hear something back in the coming week.

We did hear from the Acthar company, and shock of shocks, insurance denied coverage. All $78,000. We could appeal, but Dr. says its unlikely because I have not had a bad response to the cheaper and readily covered  IV steroids. So we are moving ahead this week with the steroids. Maybe I'll use the extra energy/wakeful hours , if I'm not busy eating everything, to get the resources sorted out. Or maybe build a shed. But I don't have any building materials, so most likely I'll just sit around and eat frozen Snickers. And sort through any recommended resources anyone throws my way.
Thanks in advance.

Thursday, August 25, 2016

Good News, Bad News

Sorry for the hiatus. But frankly, there has not been much to report. Which is good news. Just lazy summer days with few appointments or obligations requiring  me  to leave the cool confines of my air-conditioned dwelling. I did get some discount plants at the hardware store. Which are great, because most plants probably view my yard as the place where nice plants go to die. So getting ones that are already mostly dead saves us all time, water, and money. I didn't know there was a life support section to the garden shop, but a neighbor clued me in, and one day the bug got me to do something to green up my yard, so I stopped by and found some sprouts in need of some TLC. And a couple bags of potting soil. The babies were very excited to help plant and water. And since, they have been excited to uproot, de-blossom, or just rudely knock over the planters. Every day. Like it was an item on their  chore chart. The ONE they remembered to do.  I kept watering them, the plants not babies,  anyway and one day, I was pleased to finally see the hint of a pink fuchsia blossom. And then,  the next day it was gone. I found it plucked, abandoned, and  withered on the patio. I guess it serves it right, drawing so much attention to itself and all.

But a few weeks later, we went to Chicago, the kids went to Grandma and Grandpa's, and the poor struggling shoots had a chance to grow and blossom. It was only three days but it seemed to be just the respite they needed as I now have blossoms and color bursting forth from both planters!! The fuchsia might need some therapy, as it is still keeping to the shadows. But the other plants give me hope it will come around soon.

And then for the bad news, as if tortured plants were not enough.

Like I said before, we had planned on making our short trip as much like a vacation as possible to a) mitigate any bad news we might be bringing home and b) because it had been about four very full years since we had  taken a vacation sans kids. So we splurged on a room at the Four Season's, complete with massages and room service. And then, curtesy of the staff, cocktails in the lounge.

We only had a few appointments, over two days, so most of the time we just got to relax. Except the MRI. It was scheduled at 4:00. So at three thirty we walked the eight blocks to get there and I got in the line to register. It was at that precise moment we realized we had forgotten the paperwork the doctor wanted filled out by the technician doing the MRI. So Shane hoofed it back to the hotel and I kept encouraging new patients to go in front of me, keeping me at the end of the line for as long as possible. Until I couldn't because there weren't any more. So I had to finally fess up. I think Shane returned just as I started talking, but it didn't really matter. Apparently, the facility had called my cell phone the day before, which had been off for the flight. We arrived late to the hotel so I didn't even notice a call had some in until the next morning. I didn't recognize the number and got weird ringing when I reverse called it.

Well, it had been the MRI facility confirming my appointment. If the call is not answered and confirmed, the computer drops you from the schedule. So I was no where on the day's list and it was already 4:00.

The receptionist was super nice and said maybe they could squeeze us in anyway. So we sat down to wait. And wait. For over two hours. Which in the scheme of the applying for HSCT process,  was a drop in the bucket.

Finally, I got to put on hospital garb and wait in a different waiting room. And met another applicant there to see Dr. Burt. Then into the machine I went. It was the longest MRI I've ever had. I actually got  bored. They had heated blankets, just like at home, but the machine made new and stranger sounds than the one here. So it took longer for me to find my rhythm and just relax. Finally I did, and even started to dream. Then it was time to come out for the shot of gadolinium, and back in for the final scans. We finished at 8:00 and headed back for dinner.

The next morning we headed to the hospital for our appointments with the doctors. Our first one had been scheduled for 9:00, but got moved to 1:00. So we had another leisurely morning. The first morning I had woken to the sound of foot steps in the hall and thought,
'Kids are awake. Must be time to get up.'

Then I realized where we were. Rolled over and waited to wake up until our coffee was delivered. Because, what's the point?

Again it was a very short walk, which was nice when Shane had to sprint back to get MRI forms. I had been kind of worried about walking around the city, as it was supposed to be near 80 the days we were there. But I was very pleased  to find the city was very shaded by the tall buildings and there was usually a nice breeze so my legs didn't get turned to jelly. AND, no hills!!! So walking was not a problem at all. Though we did no do on any crazy long hikes. So to the hospital it was.

It felt pretty unreal to be waiting to meet Dr. Burt. I mean, I had heard about and had been following his research for over a year. It felt like meeting a celebrity. And WE had an appointment with him.
I even took a picture of Shane waiting in the waiting room, but it seems my gadgets are not speaking to each other ONCE AGAIN! so I'll have to wait til another time to post it. But I wanted to document such a momentous occasion.  Without coming across as a creepy stalker. So a waiting room pic seemed a nice compromise.

Finally we got called back. Once in the room we a still had window of emotional space to prepare for what may, or may not be the outcome. Almost like waiting for the judge to deliver his verdict, we sat and joked about how we might react to the news. I wondered if I'd suddenly realize how much I was wanting and counting on getting accepted. And I'd break down in  uncontrollable sobs. Which would work for good, or bad news. I'm not really a crier, except funerals or watching my little girls ballet recitals. But I really didn't know what I may have not been allowing myself to admit or what my response might be. And 25 years worth of pent up emotions could be a lot. If they were there.

The nurse took the usual vitals. Then we waited for the knock on the door. Which came, and Dr.  burt entered without any fanfare. It felt strangely like a casual acquaintance coming to visit.

Dr. Burt was very warm and down to business. Which I appreciate. We were told to bring the copies of the MRI from the previous day, but apparently it didn't matter because he had already looked at them.

"So. I looked at your MRI" he said, after introductions.

"And, frankly, you have a lot going on. Four enhancing areas just from the last few months."

(Only new, like up to 12 weeks, damage shows up as enhanced with the gadolinium.)

"There is quite a bit of atrophy, which we know cannot be reversed with any therapy. So there's also that."

At this point, Shane was expecting him to say, HSCT would be too much for my brain right now. But he didn't. Instead he said,

"You need HSCT."

I think it still might not have sunk in. I didn't cry. I agreed I needed it. He said he would do it. We were IN.

After reading so many people's rejection posts on the forum, I felt like we had just gotten admitted to a super exclusive club. Dr. Burt is very selective in who he thinks could benefit from the procedure. And I was one of them! He does treat patients off-study on a compassionate basis, but one hall mark they look for is inflammation ( enhanced lesions). Meaning, there is still bad activity in the brain, which is damage happening, and though usually not desirable on MRIs, the BAD NEWS, actually resulted in GOOD NEWS!

The rest of the visit with him was mostly informational. We met the nurse who will be our contact person and will investigate the insurance benefits for us. And if insurance balks, Dr. Burt will do  a peer to peer review with them. And hopefully that will end it.

Then we left for lunch. We didn't have a ton of time, but we found a cute place for tapas, which was also really tasty. So tasty, that we decided to go back for dinner so we could try more.

Then back for a meeting with the neurologist, Dr. Balabanov. Who we also both really liked. He had two trainees as well, so we got to enjoy all the probing questions he would ask them, in addition to his questions for me. I really liked his approach, and mild accent. And the informal back and forth that gave you the feeling that it was all in fun, but you knew he was watching carefully to find the evidence he was looking for. But it wasn't like he was looking to see if I were guilty of something, so I didn't feel unnerved.

The tests went fine. Even the walk up and down the hallway. Seven times test. But he found enough  things he was looking for -the MRI is only half the story- and concurred with Dr. Burt's conclusion.
Then he called me stubborn. For not being on any drugs.Which I didn't mind. And asked how I ' Came to dees weesdom'  of having babies and breastfeeding for natural therapy. And why, since I was stubborn and wouldn't take the stronger drugs was I now willing to take  20ml of cyclophosphamide, just as an appetizer.

I told him because it had the best ROI, and is my last, best hope. So "Carpe IVum!"

He was satisfied. (More good news.)

However (dun dun dun, bad news is coming..get ready for it...ok not really that bad)
He wants me to take steroids while we sort out a date for starting treatment to prevent further irreparable damage and avoid a crash. Or, if I wanted less side effects, I could take Acthar, the god of expensive drugs. I had read about it on Marc's blog so was prepared when my neurologist said we'd have to go through some hoops with the insurance company. Apparently $78,000 worth of hoops. Just another demonstration of HSCT being very cost effective for the insurance companies. My neurologist did agree the side effects are far preferable and she would recommend to patients if it were not so expensive.

Then I started reading up on dosing and  injecting and all that. It is given intramuscularly, though it looks like there might be a subcutaneous version, but not sure which formulation I get.  The latter would be no big deal, but the IM practice video made it look a little involved. 'Stab the area planned for injection. Draw back he plunger to check for blood. If blood enters the syringe DO NOT INJECT. Remove the needle and pick a new spot and repeat. Until you are sure you are not injecting into a vein. Repeat morning and evening for 2 weeks.'

   With the IV steroids I could just go and get it done, no insurance hoops. But I would have to go there every day. For three days, or whatever the Dr says. So, it does involve leaving my house. I told the Dr if we don't get insurance approval by Friday, tomorrow, I'll go the IV route. I have lots of house projects if I need outlets for the increased energies.

So we wait for insurance to issue it's decrees on both petitions. Hooray, more waiting. But hopefully for the last times. Once we are done with this, other than the follow up care here and the annual checkups in Chicago, my medical outings should be greatly decreased.