Thursday, February 25, 2010

We Are Home

I wonder how many blog titles we have that start with "We Are Home".  We are home.  We came home last night.  The hospital thought it would be oh I don't know, fun, I suppose, to move a patient into our room with a contagious illness.  It was an infant but an infant that was sneezing, coughing, and not very happy.  They came in about 1 am.  By 8am when the doctor who came in to talk to them dressed down in "ISOLATION GEAR", I thought, OH how interesting.  Our docs came in next and I said, "we need to go home".  I am so greatful for Children's and healthcare but its a bit distressing how things are over looked for convenience sometimes.  Like there was a question or chance Gary's spot on his armpit could have been MRSA.  No one would swab it to make sure.  We should have been in isolation until it was determined we were in the clear.  Children's is in desparate need of expantion. I asked for an appointment in the infusion center for our last dose of steroid.  They readily agreed as long as I could flush and hep lock his IV.  NO problemo.  We were exhausted, well I was exhausted by the time I got home.  Gary was ready to take any WWF champion who walked thru the door.  Gotta love them steroids.  He is feeling excellent.  His strength and energy are that of a energy drink times ten.  Steroids,  gotta love, and hate them.  But they have seem work very well.  Our next infusion is Tuesday for IVIG and another pulse.  This week was the start up's of our monthly overnights.
Gary's opening ulcer, looking better.

Monday, February 22, 2010


Why is this hard to believe.  Why am I here.  Questions that come around every once in awhile as I sit waiting for the IV team.  I feel so blessed to be here, but at the same wish I wasn't.  Our clinic appointment was, well we were admitted.  Gary's opening sore he has under is arm is progressing quickly in my opinion.  I don't mean to make it out more than it is, but any hole in your childs body seems really big.  The doctors have been discussing Gary quit a bit in there Thursday meetings.  It wasn't like they knew it was going to happen.  But the puzzled look they gave me last month in clinic was a clue I didn't quit grasp.  How do they treat an open wound I have been asked?  Well I think the first order of business       being paged down to the room      more later........

First order of business is to stomp the smoldering fires out.  I compare this to a campfire.
There is a reason the camp ground asks you to throw dirt on your fire before zipping your tent up.  You don't want to burn the forest down.  Sometimes however, it still smokes and is still warm in the morning.  OK fine I get off metaphor explaination.  I was enjoying that though. I like to camp.      We need to get the disease turned back off with a heavier chemotheray (Cytoxan)  to help with this.  This was the drug that we had him on from June to September.  After 10 treatments we stopped the Cytoxan and added Cell Cept.  Over the months, slowly but surely signs of vascular damage in his armpits and the rash that leaves small raised dots on the inside of his hands and on his face, were a clue that maybe we don't have this under complete control.  Gary's armpit is looking a bit better.  They have been treating it with ointment, the name escapes me.  I sought the advice of the Smedleys right away, before we even got to our doctors appointment.  The doctors here are great about including you in on the treatment.  Dr. W asked me, "what do you think should be done?".   She was referring chosing a medication.  There is a medication that just went through a study trail, that had some success but won't be ready for a write-up for awhile.

Rituxan:   Used as chemotherapy against non-Hodgkin's lymphoma. Rituxan will not wear out the bone marrow. It does not cause hair loss or apparent increased risk of infection. Rituxan targets a type of B cell involved which does bad things, causes the immune system to destroy only those B cells.

Cytoxan:  An anticancer drug, works by interfering with the growth of malignant cells. It may be used alone but is often given with other anticancer medications. In addition, Cytoxan may sometimes be given to children who have "minimal change" nephrotic syndrome (kidney damage resulting in loss of protein in the urine) and who have not responded well to treatment with steroid medications.  Cytoxan may cause bladder damage, probably from toxic byproducts of the drug that are excreted in the urine. Potential problems include bladder infection with bleeding and fibrosis of the bladder.

The Rituxan or whatever its called works for some, but they do not know the side effects it has in store for the future.  I considered it because it sounds heavy duty.  BUT I wasn't feeling it and opted for what we knew, cytoxan.  My decision was confirmed when the Smedleys used this particular drug for Mason.  It left them with not so great results.  They are not a fan.  Shhewwww.  I was so glad to have that confirmed.   We are gettng pulses of steroids over the next 2 days.  Scheduled to come home Thursday.  I will keep you updated the best I can.


We are being admitted to the hospital.  We will be here for three days.  They are restarting his big Chemo Drug, Cytoxan.  I will update more when I can.


It has been a great week catching up on laundry and recovering after the marathon.  I am just about ready to start running again.  I truly miss my daily workouts and can't wait.  Still having a little tenderness in my knees and heals at the end of the day but other than that I feel great! 

Gary is doing better.  We have noticed several changes though.  He had a tough time recovering from our trip.  He was extremely moody this week.  On Friday, I had to call the hospital because the skin under his arms is showing active change.   That means his skin is damaged from us lifting him up under his arms.  I think I mentioned it in previous posts.  The vasiculitis capillary damage?  Well its funny (well not really funny like ha ha)  this is happening because while in Austin I was showing Mason's Dad Gary's armpit (I am always seeking opportunity to compare and seek advice especially from the Smedley's).  He said that is what Mason's skin did right before an ulceration would begin.  I knew this.  I wasn't too concerned at the time because his armpits have been like this for awhile.   Slowly changing and becoming more and more bruised with a sort of spider vein looking pattern.  Under his right armpit however, it has progressed.  Progressed to the point where it looks like someone pinched him with a paper hole punch.  The spot is the size of a 1/2 pea.  I spoke with the nurse on Friday. I just wanted  them to know what was going on.  We have an appointment this Thursday.  One of the doctors offered to see him on Friday but I stupidly turned it down.  The kids were and still are recovering from the stomach flu.  Poor Elexis was the last kid to get it (Rob and I are still a little worried we haven't been passed up).  She had it pretty bad.  None stop throwing up.  Poor baby.  She still is eating lightly.  Anyway, I didn't think it was a good idea to make her ride all the way to Seattle.  But if I knew how much the spot on Gary's armpit was going to change over the weekend, I would have gone in.  The spot  already looks like its trying to form a crust or scab or something over it.  It is tender to the touch but so far not terribly painful.  I have been trying to lift him from his bottom or by his pant legs.  We have also been trying to lift him by placing a under his bottom and an arm across his chest.  Just by doing that I noticed his chest looked bruised.  It's all a mad game.  What I am really not trying to think about is the sun exposure he had in Austin.  Of course his armpit didn't get sun, but the sun can kick off disease activity in the body.  Uggghh.  I am beginnning to think we don't have him on the right medicine as well.  We went from Cytoxan (Big heavy duty chemo) to Cell Cept.  So hopefully tomorrow we will get it worked out.  I even entertained packing a overnight bag.  I really doubt it will come to that.  My sister has tomorrow off, so she will come with me which is very good.

THIS IS NOT Gary's arm, but looks similar.  Gary's armpit looks not as deep but very much similar.

Wednesday, February 17, 2010


Didn't mean to neglect the blog.......Thank you to everyone who has donated on my firstgiving page.  We are home from Austin and I DID IT!   I can barely type those words without getting emotional.  It was a truly amazing experience.  I know not everyone is cut out for a marathon but to experience it is like no other.   The morning of the marathon was a bit rough.  I had gotten little sleep the night before.  I was very nervous.  I tried telling myself that I was just running, what was the big deal.   I just was!  The race magazine recommended you arrive by 530am  to avoid traffic. We were about 25 minutes from the race so we were a bit early which made things much worse.  The cold really got to me on top of my nervous stomach.  I literally did not want to move.  At one point, I had my head in between my knees and began to cry.  I had to do something or I was going to cry or vomit.  I chose cry.  I know what your are thinking. What was getting to so bad that you cryed.  This was it.  It was time to put my mouth and training where the commiment was.  We had spent money we don't have to get there.  Months of training and months of talk.   What if.  What if I couldn't do it.  What if I fell.  What if I sprained my ankle.  Lets not mention the guarantees I was scared about.   It was a guarantee that it would hurt.  Hurt in a way I had never known.  I have three children so I know as a mom what pain is but this was pain that I could control by quitting.  You can't quit having a baby.  No turning back on that one.   But this I could turn back if I wanted too.  I knew there was no way I would  but with even being there was troubling me.  The pride my husband looks at me with.  The doubt.  The certainity of it all.   So many emotions coming at me by something I created, I did, I committed to.  I think it was just too much.  It was the SO MUCH.  My sister and her fiance were looking at me like "oh boy".  They started having there doubts I was going to even get out of the starting gate.   The hour between six and seven was long, and cold.  Keeping my stomach down took great effort.  But it finally came.  My sister and brother-in-law with love and concern took my coat, and started loading me up with my stuff.  I only took two of gel electrolite packets (later was a big mistake).  Just the conversation and needing to put those things in my sleeves was torture.  I didn't want to touch anything or move for that matter.  My brother in law kept asking me if I was sure I didn't want my sunglasses or my bars or the rest of my gels.  I just wanted to run.  I wanted to face it and go. 


I found two shirts in the middle of the crowd.  Complete strangers but members of the CureJM foundation, running for the same reason I was.  Never met them in I embraced them in a hug without even saying anything.  They hugged back.  I muttered I was very scared.  There words of encouragement poured over my soul as if they were words directly from God.  I glanced back at my baby sister now making her way back to get the rest of the family.  I wanted to run and jump in her arms.  But I couldn't.  My new friends knew I needed to talk it out.  They just kept asking questions and encouraging me.  As soon as 7 o clock chimed, it was time.  We began to all proceed in a walk as one.  I almost immediately felt my body release inside.  Large fireworks went off at the start line and lite the crowd up!  Something sparkly.  Feeling better.  I like sparkly things!  :)  We walked for about 15 minutes, then it was time for our "chip" to go.  We were at the start line.  I found another part of the Cure JM team right before so we tried to get together.  But I knew that this was my run and no one elses.  A strange feeling when you are surrounded by 10,000 people.  The first half mile and my body felt wonderful.  It was exciting.  I felt great.  I was so releaved to feel my body running in a perfect rythm.  We hit our first band.  They were loudly banging a native sounding drum that was electric.  People were screaming in celebration to encourage themselves and one another.  I quickly figured out I signed up for the wrong chip which I figured.  I signed up for the 16 minute per mile.  I run a ten minute mile.  So it was good and bad getting around people.  It gave me confidence but broke my pace as well. 


I was warned about hills over and over again.   LIARS!   That is what you call a hill?  Another aspect of the race.  I mean they had hills but I was expecting WAY worse.  Thank you to all the over exagerrators.  Come to Seattle.  I will show you some hills.   LOL  We go from Sea Level to Mountain Ranges in the matter of minutes.  Now that was up and running, everything went mostly well.  I was having 2 problems.  I became very hungry, and my pants kept falling off my hips.  I texted my family that they needed to find me because I needed my energy bars and different pants.  I made 10 miles by 9am with a 715am start.  I was very anxious to make that mark because the magazine said that any full marathon runner that did not make the 10 mile mark by 10am would be diverted to the half marathon and not receive a finisher medal.  I made it with an hour to spare.  Ssshhheeewww!!!!    


Well it was actually jelly beans that saved my marathon butt!  LOL  My family couldn't find me.  Street closures, tons of people, confusing routes, it just wasn't gonna happen.  I had to come to terms with this meant I just needed to cope.  I yanked and yanked on my pants.  I literally was trying to give myself a wedgie hoping my hinnie would assist me in my discomfort of needing to pull them up.  I could have taken them off, but you know, I didn't feel like getting arrested or tazed or making the evening news.  LOL  I did have shorts on my then I risked triction burns in places I didn't want them.  My hunger was really starting to rob me my energy and I began to sweat more, breathe harder and slow down. The marthon route went thru many residential neighborhoods.   So people set up in there yards to root people on with signs, bells, whistles, and CANDY!  Thank you to the young girl with a bucket full of jelly beans.  You are part of my success.  My family was trying very hard to find me.  I was able to text that I found some jelly beans and was feeling better.  I told them not worry.  I would survive.  I stopped at almost every water station from that point out.  The water starting tasting funky has the Austin sun warmed the day up.  Wax cups and water  BLAH.  After that I only stopped for anyone who had power aid.  The more miles I went the more frequency I had with run walk run walk run walk.  My wordrobe malfunction started to work itself out as well.  My family had given up on finding me.  They said they were between 21st and 22nd miles.  Something that gave me fuel, something to look forward too.  The gradual ache and pain came on.  I looked for the sign I needed to see so much.  The next mile marker. The picture is appropriately fuzzy LOL.  Those signs were great.  Once in awhile someone would have the same color jacket on.  It would make me angry when the signed moved because I quickly figured out it was not my beloved mile marker!

Towards the end when the running on nails kicked in, it became a game of I pass you, you pass me.  I sort of got into a pack.  It didn't bother me like I thought it would.  One of the more difficult aspects was the cheering sections.  These people have been out there all day.  Cheering for 4000 runners.  I could not bare to walk past them.  I did walk past a few cheering sections.  They are still encouraging but you got a much better response if you were at least trotting.  They really like it if you look like your in pain.  Which most of us were.  It also did not bother me that I was playing the pass and be passed game with a gentleman in his 70's.  So awesome!  He did so well.  I was so proud of him.   After so many miles the emotion started playing in because I knew at this if I had to crawl, naked, and bloodied across the finish line, I was going to do it.  Ok  maybe not naked.  But you get the picture.  It kept hitting me, Oh my God, I've got this.  I just might do this.
MILE 21  Energy Revitalized

There, just past mile 21 was my reason.  I began to whimper and sobb as I approached them.  I quickly sucked it up because I wasn't done.  The skys were clear, and the temp were reach the 70's.  I hugged them.  I especially stopped to hug Gary.  He stood there, unfortunately in the sun, clapping tenderly.  He didn't make eye contact with me so I got down face to face and kissed him.  I didn't stay long.  I guzzled some gatorade.  I was good to go.  I cried more as I ran on.  As always, it's all crazy beautiful. I thought as I ran on how lucky I was to have them all.


None of this was going to be easy.  I knew this.  By mile 24 and 25 my hip flexor was pinching on right side and my left foot was cramping.  I was having to compensate on both sides.  About a mile away it got really quiet.  The route took us through the University of Texas.  Everyone was walking at this point.  "I was hoping I would catch up to you."  I turned around and there was Kelly.  Kelly had the familiar blue shirt of Cure JM  on.  My angel in blue!   I almost cried again when I realized I would not be crossing the finish line alone.  She said "1/2 mile away".  Someone called from the crowd,  "6 more blocks runners!".  I admit I was surprised.  I thought I had another mile and 1/2 left.  I was happy to lose count.  Someone called from the crowd we could walk all the way up to the .2 mark then run it.  So that was just what we did.  It was wonderful.  Kelly took off running.  So did her companion.  I found myself in a full run.  I saw the clock.  I was 2 minutes away from keeping it under 6 hours.  I ran like hell.  Of course my pants started falling down again!  But I was just happy to be done.  I cried.  What an amazing experience.    I collected my finishers shirt, grabbed bags of chips, and went outside the finishers tent to hug and congratulate the other finishers from our 'team'.  It was great day.


My favorite part was getting the call from my Mom and Dad.  The moment I told them I was running a marathon, they seemed worried.  Worried my body wasn't designed for something like this.  They were worried I would injure myself or not make it and be disappointed.  They used great concern and caution when encouraging me.  My Dad was so proud he was near tears when he heard I had finished.   *TEARS*  I texted him on my 13th mile, "13th mile Daddy!".   They picked us up at the airport.  My mom could barely look at me without tears flowing down.  They even came over the next day to check on me.  Dad wanted to see my medal again.  I love them with all my heart.  It makes me so proud that they are so proud.  Such wonderful blessings. The picture is my parents dropping us off at the train station.  Thank you Mom and Dad for everything.  For helping me, for loving me, and for making me, me,  well with the help of God as well.


In the excitement of the marathon we were caught off guard by the weather.  I had kept an eye on it all month.  Rain was expected.  When we landed in Austin, it was cool and cloudy.  The next day it rained and rained.  Sunday came and it was clear and beautiful.  For parents of a kid that is very sensitive to the sun, this is not a good thing.  Gary was exposed to the sun.  When I came in on the 21st mile I immediately had bells going off in my head.  I hugged and kissed him then looked at everyone and said "get him covered up as soon as possible".  I crossed the finish line.  Took photo's and everything.  We looked down and Gary was throwing up all over.  And it wasn't a cute little up chuck.  He was full on heaving.  I had to get off the phone with my Dad.  I picked him up and began hobbling to the car which was about 4 blocks away.  Everyone tried to take him but he wanted me.  He threw up more and more.  It was our first domestic bug or over exposure to the sun or a bit of both.  We got him back to the hotel and put him right in bed which is where I wanted to be at that point too.  He slept for a few hours, woke up again and vomited, again.  I called Children's in Seattle because like I said, it was our first time since being diagnosed.   I have heard these kids can dehydrate quickly.  Their bodies have been through a lot with the heavy drugs.  I did not want to take any chances.  But the rheumatologists said to keep him hydrated the best we could.  Make sure he was peeing.  If we couldn't get  his meds to stay down then we would need to get a anti vomit drug.  But it didn't come to that.  He woke up that night and his stomach opened up.  He was better.  Thank you God!  The sun left behind a terrible rash which we are keeping an eye on. It's better today but was much clearer.

I know there are so many people I have on my heart to thank.  I thank everyone for there generous donations.  But I wanted to publically thank the following people in my life who were involved in my training nearly every single day and made it all possible. In no particular order:

Thank you to April Fleming.  April is one of my best friends.  She would willingly watch Gary for me 3 and 4 times a week so I could run and train.  She encouraged me so much.  She never doubted.  Gary looked forward to going over to her house to play with kitty, watch cartoons, and eat all of Auntie April's snack.  That made it so easy for me.  I love you April.

Thank you to my brother-in-law Bill Saas.  Not only did he take Gary for me nearly everyday, he would often hunt me down "Your running today right."  He even printed out a training schedule.  He held me accountable to what miles I had done.  He was encouraging above and beyond.  He even joined me on a run during the holidays.  All this energy he put into me despite his own struggles, including breaking his knee 2 weeks ago.  I love you Bill!

Thank you to my sister Amy.  She encouraged me so much.  We would not have been able to even go to Austin if it wasn't for her.  I love you as much as I love myself.  Thank you for all that you do for my family and for my children.  You are a wonderful Auntie.  I had a wonderful time in Austin.  Add it to one of our many adventures we will be yapping about in the nursing home years from now. Thank you for being apart of it all. *Thank you too Ray!*

To my husband, my reason for doing my best to be the best mother and wife I can be.  His positive up beat energy drove me.  He was just as nervous has I was the morning of the run.  I am a lucky girl.  Thank you honey for sharing in my passion.  Thank you for taking me to Austin, Texas and being there for me.  I am so glad I did not let you down and not finish.  You are that important to me.  I love you so much baby.  I love you so hard.  Your the sunshine on face. 

THANK YOU to all who made donations!

To be continued.....

Tuesday, February 9, 2010

One Last Post

Thank you to everyone who donated to Cure JM  in the name of ME running 26 miles and for my precious baby boy.  I love you all!

Infusion went good yesterday.  We got our own room this time so Gary was able to lay in a bed and sleep.  His levels are good.  Had one pop up but its all about the grand scheme of things.  If I was unable to answer an email or reply to someone, I am sorry.  Busy getting 5 people ready to go.  I will do my best to let you know how it goes.

Another HUGE heart felt thanks to all who donated and campaign'd for donations.

EXCELLENT progress today.  Check out my progress HERE

Sunday, February 7, 2010

It's almost here!

We leave Tuesday for Austin.  Our family is very very excited.  We are going planes, trains and automobile style.  Before we go though, we have an infusion tomorrow ; ( .   Gary is doing pretty well.  I could say he is stable.  No new or worsening symptoms, just seems to have leveled out.  He is still has become a bit unsure of his balance at times.  He has fallen more than once this past week.  But as always, its the fine line.  Is it because is he toddler or does he have some weakness.  I know he has some weakness.  I can see it and feel it.  His skin is better than it has been.  I am a little apprehensive because we leave on Tuesday at 6:15pm.  He won't get much down time to recover from his IVIG and steroid infusion.  I have a feeling though he will be just fine.  We are heading down to Portland on Amtrak to catch a 6am flight to Austin so hopefully it will be more of a distraction for him.  PRAYING.   We have a few days to explore.  I am staying off my feet right now.  I did a quick 2 mile warm-up this morning, but other than that I am saving it for the marathon.  I run Sunday, Feb. 14th.   I will try and keep you updated to let everyone know how it went.  I admit, I am a bit nervous.  I don't know why, I just am.

If you haven't had a chance to donate, there is still time : ) .  I put a new video up on my fundraising page.  All the cool JDM families were doing it, so I did one too! THANK YOU to everyone who donated to the cause.  I still can't get over how amazing you all are.  DONATE HERE