Posts Tagged ‘nephrotic syndrome’

Welcome To Holland

I have an online support group that I use for Wesley’s rare kidney disease.  One of my fellow support groupers just shared this wonderful poem.  It brought tears to my eyes.  It is a wonderful illustration of how I feel about Wesley.  

“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” 

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”


Space and Stuff

As most already know, last Tuesday Wesley’s nephrologist gave us to OK to “be as normal as possible”.  That means we can go places!  First thing he wanted to do was go to Cracker Barrel and get sausage… and that, we did.  I am still leery of germs and large crowds of people.  All kinds of bugs are floating around out there, my child can’t be vaccinated (if he could I don’t know that I would do it at this point), and of course he is still very immunocompromised.  At a few places I have made him wear a mask, but mostly we just squirt on the hand sanitizer and hope for the best.

A few weeks ago, I helped Wesley clean his disaster of a room.  He now has a place for everything.  (He had that before but never realized it)  I told him if he could keep everything in it’s place for a week, I would buy him the toy that he has had his eyes on for a while.

He took that job very seriously.  His friends came over and he flipped his lid every time they played with something.  He wanted things back where they belonged before the kids had a chance to look at them.  When Brad came home, I was telling him about it.  We went into Wesley’s room and we were all sitting on the floor.  Brad tested him by putting occasional cars in the wrong place and you better bet, the boy was right on top of that.

Since he did such an excellent job, I ordered his toys that he wanted and boy was he excited to get them!  It is a bunch of space stuff, aliens and all.  He plays with them every day.  That was time and money well spent.


So now with our broadening knowledge of all things space, and our new freedom to be in public places, I have decided to take Wesley to the Hummel Planetarium tomorrow.  We are going with friends that are also being home schooled. The show we are watching is called “The Secret of The Cardboard Rocket”.  It is about two little kids who turn a box into a rocket and fly to space.  It teaches about all the planets in our solar system and why our earth is such a special place.  Wes is way excited and so am I.

I am hoping for no sick bugs and a happy winter.  Last dose of steroids is Sunday.  I hope it sticks this time.

Almost Drug Free

At work today, I finally got the call.  Blood work says all CD19’s are wiped out!  Wesley doesn’t have to get anymore infusions until he relapses.  That should be atleast 6-8 months.  We will be finished with the evil steroids on October 6th and hopefully we will have a drug free winter!  This will be his first good break from the steroids Since April 2011.  PLEASE stay FAR away from us if you are sick!

Wesley got to go to Cumberland Falls today with Brad, Annie, Papa John and two lovely friends from England.  While I was at work, it was hard not to worry about Wesley’s well being.  I am so crazy.  I was worried because: 1. He was traveling.  2. He was traveling far from me.  3. GERMS  4. Cliffs, rocks, water and other natural dangers.  5. Mosquitos/West Nile.  And thanks to my informative co-workers 6. Bubonic Plague and Hantavirus.  I called Brad twice to remind him to apply the all natural bug spray thick.

Hopefully, he did not contract any of those things.  Otherwise, he had an awesome day.  He hasn’t been there since he was very small.  Too small to remember it.  Last night, he drew a picture of what he thought the waterfall would look like.  When he got home, he told me it was different than the picture he drew.  He told me about all the rocks and water and stairs.  He also got to see five raccoons.  Not to mention the fun times with family and friends.  (And he found his long lost Ice Age DVD in Annie’s van.)

So much easier now not to complain about that $1.50 parking fee today.  My boy is done with the needles for a while.  He will be off steroids in less than a month.  The weather is about to get cooler which means more outside time for us.  For these things, I am so thankful.

Penny Is Not Patient

Wes had to get his blood work yesterday so that we know if he needs to continue with more infusions or not.  We should have results by tomorrow or Friday.  We had to drive all the way to Lexington to have it done.  I suppose it can’t be done locally because of the specifics involved.

It should have only taken about 15 minutes.  I went down the hall to get the orders from his doctor, then back down the hall to the lab.  The lab was packed as usual, filled with all sorts and ages of people who I am sure have plenty of germs to share.

Normally, the lab manager takes us back right away and gets us out fast because of Wesley’s compromised immune system.  She wasn’t there yesterday, and neither were all the rest of the phlebotomists but two!  I made it clear when I came in that my son is not even allowed to be in public and we needed to be put in a room by ourselves and he should be top priority.  They put us in our own room, which didn’t really stop my worry a whole lot, but made it a little more bearable.

Forty-five minutes passed and we were still in there.  I went out and reminded the chick behind the counter how serious it was to get us out.  She was not compassionate at all.  Urgh!  I went back into our room and waited some more.

It must sound strange to some people who don’t have to worry about germs.  Most don’t have to worry.  Well, I do.  My kid could get an infection and get very sick.  He could end up being hospitalized or even die. His immune system can’t fight stuff off like a normal person’s.  So there we sat, playing games on the phone and doing everything possible to keep his hands off anything in that room.

Forty-five minutes passed again.  I was livid.  I knew that if I went back out there to the front desk that I would loose it and just make them mad.  So, I called his nephrologist office.  I told the receptionist the situation and it wasn’t five minutes later they came in, took his blood and we left.

We have to pay to park in the parking garage that belongs to the clinic.  I think we have given them enough money in the past year and a half to do a remodel!  It may sound cheap to complain about such a small thing, but I drove all the way to Lexington just to have blood drawn and the procedure should have been super fast.  It wasn’t my fault that they were short on staff.  So instead of paying for under an hour, which is only 75 cents, I had to pay for 2 hours, which was $1.50.  The poor lady at the little garage stand got her dollar fifty plus a mouth full from me.  She then proceeded to tell me to call administration and complain to them.  Yes, I know it wasn’t her fault that I was out an extra 75 cents, she just works there.  I am sure she gets that all the time, which is why she was so nice and respectful to such a wacko crazy person like me.

After all that exposure to every germ imaginable, it didn’t seem like a big deal to slap a mask on the boy and run into Clothes Mentor to try and sell my old maternity clothes.  I know that it takes a while and you have to wait until they get to your clothes, so I told the girl I could wait in the car until they got to mine.  I asked how long, she said 20 minutes.

Me and Wes went to the car to spend our 20 minutes.  He ate his chicken by standing through the sunroof and using the roof as his table.  Yes, I allowed that.  No, I don’t know why.  We did a few more things to pass the time, then went back in.

There were several girls behind the counter pretending to be working.  The one who initially took my clothing saw me come in and said that my basket was all ready and I could go the the register to cash out.  Those words lead me to believe that I was going to sell some clothes.

I proceeded to stand in line behind several people at the one cash register that was in use.  We waited and waited, and once again, I was doubting that we should even be in there.  Wes had his mask on and it wasn’t that packed, and besides, I was about to get some money, right?

When finally I was next, I was informed that my clothes were not up to their standards.  I argued and said they looked perfectly fine to me, which of course did no good.  Man, my day wasn’t going well.  I have never seen so many stuck up people selling used clothes at once.  Why didn’t that lazy girl who went through my clothes just hand them back to me instead of making me stand in line and wait to get nothing? 

It got a little better.  My granny came with us and we had dropped her off at the mall so she could get her shopping fix while we did our thing.  We went to pick her up and she let me run in real fast so I could make a quick shopping trip that I never get to do.

I found an awesome pair of shoes and with my coupon, they were only $9.40!  I just hope I can walk in them.


Then I ran down to Gymboree and got the boy some much needed underwear.  These steroids are giving him an unrelenting appetite which is causing him to grow up a storm.

So, that was my day in a nutshell.

This weekend, I am having a yard sale at my Granny’s house.  I hope I can sell my unworthy maternity clothes there.  I have gone through Wesley’s closet and there is nothing left that is too small!  Feels so good to get it out of the house.  Now to sell it!

Wesley is going to have a lemonade stand.  He will probably make more money than me.  Oh, well.  Come by and see us if you are around!

Cleaning House

First, to update those who don’t know about Wesley’s infusion yesterday.  He had yet again zero reactions.  Hurray!  It went well except for the part when he didn’t want to get Charlie back in his veins (His IV’s name is Charlie)  He has always done good with things like this.  When he was younger, he was very brave and never even cried.  As time has gone on and needles have become a much larger part of his life, he always likes to make a little “show” to let us know that he is unhappy.  My hypothesis for this is in an earlier post.  Now, there are usually always tears and begs and “no’s”.  Well, yesterday it was all crazy.

Brad just left the room to go to the car and get some info for his work.  That left me and Wes with each other to deal with Charlie.  Again, normally not a big problem.  Just some tears and protests and and we are done.  Not yesterday.  He threw A FIT.  He was struggling with all his might to get away.  I tried every trick I knew and nothing helped.  There he was with two choices before him.  He could either calm down and let me help him like always, or he had to be wrapped in a sheet.  Personally, I hate the sheet.  It seems so mean.  But we had to do something.  I talked to him as calmly as possible and explained the options.  We ended up tying the little guy in a sheet.  OH THE HORROR!

He was so mad that he didn’t even want his complementary after shot toy!  He shunned everyone around him for two hours.  People would talk to him and he just looked to the sky in the opposite direction as if he were the only one in the room.  He is normally super talkative to the nurses, but not after that ordeal.  The boy can definitely hold a grudge… and he does not get that from my side of the family!

As time went on, things got better for him.  He ate A LOT.  Like two days worth of food in a few hours.  Steroids, I am sure, are the cause of this.  He was also very drugged from the Benadryl, so it was like he was in this weird daze uncontrollably eating mass amounts of food.  Thankfully, I brought along lots of healthy stuff.

Then, our friend and his little girl showed up for a visit.  Their baby boy is in the NICU right down the hall from us, so they are regulars at the hospital right now too.  At first, Wes was ignoring his best bud Melea.  That was when he made his turning point from grudge holding to being a better boy.  Anytime a pretty little girl shows up, his behavior gets better.

Next, the clown came by.  That was quite the experience.  Poor Brad got drawn into his silly acts.  The clown made Brad dress up and dance for us… All in front of his best guy friend.  How embarrassing.  He handled it very well.

After that, everything was much better.  Wes put on his new super hero outfit that my dear friend got him.. He was skating down the halls on his IV pole like Super Man.

The next step is heading back up sometime before Monday to get blood work to see if all the CD19 antigens are wiped out.  If so, we are done for a while.  If not, we are in for two more Mondays.  Getting up at 6:00 am every Monday driving to Lexington is getting old fast.

The house is quickly becoming a hazmat zone.   Admittedly, I am not the best house keeper to begin with.  I loose focus easily while I clean… or do anything else for that matter.  I have been told by certain people that I have the attention span of a goldfish.  It is so hard to keep going when right behind you there is a little boy undoing what was just done.

I have been watching Hoarders on Netflix before I go to bed at night.  It has become a huge inspiration for me to purge my house of all things not useful or super sentimental.  But, I watch it, go to bed and wake up to do daily chores, then the big stuff gets left undone.

Today, my most wonderful Granny came by to help me.  We got SO much done.  If you walked into my house this second, you wouldn’t even know that we did anything.  But look under the stove, open the fridge, look inside the cabinets.. That is where we did all the work today.  I got rid of pots and pans and plastic ware that has just been sitting there.  I threw away all the moldy stuff from the fridge and scrubbed the whole thing inside and out.  I cleaned out Wesley’s closet and the only thing left is clothes that fit him!  We worked hard, but if feels so good to be free of a lot of stuff that is no longer in use or needed.  I have much more to do… Still gotta go through Wesley’s three drawers of pajamas.  (Have I mentioned that I have a kid pajama obsession?)  There are things in there that he hasn’t worn in two years.  My closet will take days.  I really don’t want to tackle that, but I definitely can’t wear 0’s and 1’s or 2’s, 3’s or 4’s… and many other sizes for that matter.  What is the point in keeping it?  This deep cleaning business has been a long time coming.  I am so glad my Granny was here to inspire and help me to keep going!

It’s so nice to not feel like I am walking through an episode of Hoarders.  My house lost about 400 pounds today!  Hopefully I will keep the motivation up and finish!  We are having a yard sale not this Saturday but next.  Can’t wait to get rid of things taking up space in my house and my life and get some much needed cash!

How do you keep the clutter down in your house?

Rituximab Infusion #1

Wesley was scheduled to be at the Kentucky Children’s Hospital 8:30 Monday morning.  But in typical Penny fashion, we were about fifteen minutes late. (I really do my best to get to places on time, I don’t know how I am always late)


Dr Kiessling of course had just been in ten minutes before we got there.  So we had to wait for him to come back.  He had other patients on the floor so it wasn’t a huge problem.  We again talked about the side effects and what we should be watching for during the infusion.  He would be in clinic all day, but the clinic is connected to the hospital and I made sure he had his running shoes on just in case we needed him.  He reassured me that he did.  There were two residents who were right there constantly if we had a problem, and if it got serious, Dr Kiessling would be there fast.

While we waited for the meds to come up from the pharmacy, we tried to get comfortable in the room.  Poor Brad just wanted to sleep.. and so did Wes… and so did I, but how could I sleep at a time like that?!  So, I just took pictures.


I had all the presents ready and put them up on a shelf.  Wesley wanted to open them as soon as we got there.  I let him pick one out to open.  He ripped the paper off and found a Mario shirt inside.  It wasn’t too much longer that his new pajama shirt was off and the Mario shirt was on.  I told him no more presents until they did his iv.

We took him into the procedure room to do his iv.  As I mentioned before, that is not at the top of Wesley’s to do list… but it had to be done.  I held him and he cried the whole time.  Not much could distract him.  Three nurses were there to help.  It went in very good, and apparently they got a good vein because as soon as it went in, blood was shooting out everywhere!  It was all over my leg and one of the nurses was down there washing my leg.. lol.  I think at that point Wesley thought it was kind of funny, so he got better.  His iv had a name.  Charlie.  Charlie was a girl.  Wes hooked me up with an awesome necklace and bracelet out of the treasure box.

He had to be premedicated before we could do the rituximab.  This was to minimize any reactions that he could have.  They gave him Tylenol, Solu-Medrol and Benadryl.  We had to wait thirty minutes for that stuff to start doing it’s thing so we played in the playroom.

Wesley loved the playroom when we were there a year and a half ago.  It was THE place to be.  As soon as we got in there and looked around, he informed me that it was boring.  So we checked out the library and he found a car and some books to read for later.  He was much to big for the car, but he road it around all day anyway.

After thirty minutes was up, the rituximab had been delivered and was ready to be started.  Oh, was that one of the scariest moments of my life.  We hooked him up and stayed in the room after that.  His blood pressure had to be monitored.  We had to keep a good check on his temperature also as it could cause fever.  We knew what could happen, but didn’t really know what to expect because every person reacts differently.

After the first fifteen minutes, my heart was much more at ease.  We were mostly past the part that he could experience anaphlylaxis.  I let Wesley open his next present which was a couple of little Play Doh construction thingies.  He really liked that.  It kept him busy at the first of the infusion and it was something calm to do while we sat there.  PBS Kids helped too!

Each hour, as long as Wes had no reactions, the nurse was ordered to up the speed of the infusion.  Each time, I panicked a little, but the kid never reacted and it went so much more smoothly that I would have imagined.

We were moved into another room to spend the night.  It was about dinner time when they moved us.  Well, from past experience, I know that they are not capable of making my kid food that he can eat that won’t kill him.  I brought food and Brad’s mom showed up with more food.  I was in the room cutting broccoli up, peeling potatoes and shucking the corn!  I don’t like using the microwave to cook, but it works in a pinch.  I am sure it looked weird, but atleast my kid was safe.

They brought up the plate that was supposed to be for Wes, it had the big red paper on the tray that said he was allergic to milk, soy and egg… right next to that paper was a plate full of breaded and fried chicken with green beans and corn.  I would say that from the way it looked, that chicken was breaded with milk and egg, then fried in soy.  The veggies also looked like they had oil on them.  Ah, the frustrations of food allergies.  I am still just appalled that a Children’s Hospital isn’t equipped to deal with serious food allergies.  That is another story.

It’s all good, cause Brad ate Wesley’s tray and Wes had fresh stuff that I fixed for him.  There was plenty of Wesley friendly food that me and him shared.

We stayed up and played Play Doh, painted and most notably, played Mario!  Wesley has been banned since the end of July.  I figured now was the best time to give it back to him!

Then I popped some popcorn per Wesley’s request and we ate it before we went to sleep.

We woke up and got out of there fast!  Me and the boy slept all day after we got to the house!  Here we are home sweet home in our own bed.  So wonderful.

Since Wesley’s body handled everything so well, we will go back up next Monday and do another infusion as an outpatient.  It should only take about three hours and we will come home.  They will do blood work and as long as all the CD-19 cells are wiped out, he won’t need another infusion.  If they aren’t, we will need to go back two more times, seven days apart.

Wesley’s immune system is seriously suppressed now.  The nephrologist told me that there have already been reports of the flu this early in the year.  We were cautioned to keep Wesley out of all public places and away from anyone who has any sign of sickness.  Last year, during the chemo, we did this.  But that started close to December.  This is only August!  Seems like it will be a long time before Wesley will be able to do normal things again.  It is so worth it to keep him healthy and out of the hospital.


The dreaded day is almost here.  I got a call from Wesley’s nurse, Stephanie, yesterday to tell me that the insurance approved the rituximab.  I knew it was coming, but I was very unprepared when she told me that I should bring Wes in this weekend.

I was at work when I got the call.  I hadn’t even told Wesley anything about it.  He has begged me to take him to the water park all summer.  I talked to Brad about it, then called Stephanie back and asked her if it was possible to come in on Monday to do the infusion.  I really wanted Wes to have at least one more fun day before we destroy his immune system.  Thankfully, she said that would be fine.

When I came home from work last night, I planned on sitting down with Wesley and explaining it all to him.  But the information had already been leaked.  First thing he asked me when I walked in the door was, “Am I going to get a shot when I go to the hospital?”.

Before NS, my little man was so good about needles.  He didn’t cry.  He was always very cooperative.  I think he handled it so well because I always prepared him for it and let him know it would hurt for a second, but then it would get better.  When he was diagnosed with NS, we were being admitted into the hospital and this nurse insisted on wrapping Wes in a blanket to put his IV in.  They all held him down and I was at his face trying to comfort him.  Looking back, I totally should have spoken up and told them not to do that.  It really changed things for us.  Now, he cries every time we get blood work or anything to do with a “shot”.

So, there I was trying to explain things to my little boy that no little boy should even need to know about.  He was confused with the hernia surgery.  He was thinking that was why he was going into the hospital.  I guess we will be dealing with that one later.

My baby is scared.  During regular conversation, he will occasionally throw in a question about what is going to happen at the hospital.  I have tried to reassure him that I will be there the whole time and he can lay in the bed and I will lay next to him.

Last night, I couldn’t sleep because I was trying to think of ways to make this less miserable for Wesley.  I thought maybe I can buy him some new p.j.s to wear all day so he will be comfortable.  And wrap a bunch of presents for him to open through out the day.

The children’s hospital is very good about having plenty of things to keep kids busy.  I suppose I shouldn’t worry so much.

I always feel so alone dealing with this disease and the treatments.  Nobody that I am close to understands.  Wesley’s disease is invisible, you can’t see it.  People always just assume he is doing fine.  I feel like nobody understands a word I say when I am talking about it, and I am sure that is mostly true.

At work yesterday, when I found out that this rituximab thing is for sure going to happen, I was near falling apart.  I work in a pharmacy and one of the pharmacists that I work with has dealt with autoimmune stuff for years.  He has been on steroids, he has taken different medicines, he even tried one similar to what Wesley is going to have.  I really found consolation in him.  He himself has been in a similar situation as Wes.  It made me feel a ton better to talk to someone who is above my level in understanding this stuff.  I think he has no idea at all how much better he made me feel about this choice.

So, our weekend is about to begin.  We are going to a wedding today.  Wesley is especially excited about the “party” (reception).  Then tomorrow, it is water park day!  I don’t care if it’s pouring down rain.  As long as the water park is open, we are there!  I must make a trip for new pajamas and a few toys.  Then, Monday at 6:00 am, we are off to the hospital for an overnight stay to get my kid into a drug free remission.  As long as all goes well, we will be home Tuesday!