Thursday, July 29, 2010


This update is brought to you by/for *Momo*  : )

The saga of the great taper continues.  After last weeks noticeable slow down, he has seemed to level out.  I imaging being on steroids all this time, his body has to learn to make his own natural steroid again.  So it make be a little rocky in the beginning.  He is doing better as far as energy.  His skin is a little red but he is an active boy.  I keep him layered in 70 sun block.  He has been refusing to wear hats suddenly so maybe its time for a new one.  SLEEPING   ugggghhhh I don't know what the deal is.   Or I do know what it is.  We have been trying to get him to sleep in his designated bed.  Up at 2am?  It's not going well.  But we shall stay strong.  That is why I slept in my daughters bed last night and he slept with Dad in our bed.  The moment the little bugger hits my sheets, he goes into dream land.  He loves my bed.  Who didn't love there parents bed.  It's the biggest and the best in the house.  Even to this day sleeping in my own parents bed is very nice.  The one thing I did see with Gary yesterday was him next to another kid around his age.  The were standing together at the window, and WOW could you see that the JDM.  The family does have beautifully pure white skin but Gary, standing next to this kid looked slightly, I don't know, tattered for lack of a better word.  He looked like all was not right with his body.  But we know this about him.  It just is eye opening when I get that glimpse.  The whole, but I don't look sick theory.  I don't look sick when I am not standing next to someone who isn't.

Yikes! That's tomorrow!  We go down to 1 ml of steroids.  We will stay at the dose until we are seen on August 10.  We have a full day in the making.  We see a dermatologist at 8:45.  Gary picked up a skin virus when they started the chemo's.  I have never blogged about it I don't think anyway.   But he has a nasty case of molluscum.  It is a type of wart.  I know, VERY icky.  His body does not have the ability to fight these things off so they just keep spreading.  A few have become infected and hurt him very much.  We have to be careful when picking him up.  If he is playing and someone accidentally hits the infected ones, it sends him to his knees, crying and sweating.  They are harmless.  Most people they go away on there own with no treatment.  But, being immune suppressed, there is no ability.  I have been begging them to do something about for a year now.  Finally, now that he is in a better place, the rheumatologist mentioned, "they have a new treatment for these."  She got us in all in one day.   I l o v e h e r.   Because really at Children's, these doctors are specialists, wait lists are common.  So I will make to thank you for her handy work with the schedule.  After the dermatologist, we head over to the infusion center.  The doctor agreed to run over that day and do the clinic in the infusion center.  Must find gift to say thanks.   Back to the molluscum.  It says they are very contagious.  I pick him up all the time and have not caught them so I know it seems you should run the other way but really I haven't picked them up.  No one in the family has either so its all good.  I thought I read somewhere that if you have a had a wart before, you do have immunity to them.  But I could be wrong.  We take all the standard precautions.  The only one that is catching them his him.  I would like to apologize for grossing anyone out but I am not going to.  It is what it is.  Just another complication of all this.

My Running Blog
I did a 5k last Saturday in Enumclaw.  It was a great day of raising awareness.  I had not planned on running because this weekend Michelle and I are running in the Seafair Torchlight parade.  But my little sister and brother-in-law threw the money in my pocket and I couldn't resist.  There is a wonderful story on my running blog you need to check out.  Well more than one in that day.  A very nice lady donated to our pirate costume and my sister the hero who ran in the race.  Click Here

We Have a Guest

View 072900095...jpg in slide show
This is Whitney.  So little time, so many things to chew on.

We are babysitting my little sisters baby basset hound.  Cute!  Aaaaahhhh!   YEAH RIGHT  There is nothing cute about waking up to the sound of your running shoe being chewed on!   She was trying chew my ipod sensor off.  I don't find that cute.  But she is cute.  I am more than happy to do babysit though.  My brother-in-law is sick and in the hospital this week.  We so know what that is like.  She asked me to go to her house to bring her clothes.  Well that is my expertise.  Happy to do that task.  My brother-in-law had a  seizure of some kind on Sunday night.  We went to the ER with him.  They sent him home saying they could find nothing medically wrong with him.  GOOD SAM in Puyallup.   Yes, I will be naming the hospital.  We were all really nervous to take him home.  By Wednesday he was getting worse.  They were desperate so they returned to the general doctor.  That doctor sent him straight to the ER (not Good Sam).  He said he should have never been released.  His brain isn't getting enough blood.  The blood flow is being compromised by block veins that were damaged  from some previous injury or genetics.  Ugggghhhhh.  Scary stuff.  They are closely monitoring him to see if they body will repair itself or if they need to angio plasty those veins.  So crazy. Prayers are welcome.


  1. Oh Erika! Molluscum are not fun, but I have a special spot in my heart for them. Kaysa had them the year that Kya was diagnosed. She would not let our family doctor touch her to cut them off. So, we took her to a "specialist". The dermatologist we took her to put numbing cream on everyone he could see on her little body and covered them with bright colored magic spots (aka neon bandaids). When he removed the magic spots he took a quick swipe by with a magic metal wand (a pair of tiny scissors) and poof they were gone. We had to go back and do this a couple of times, but eventually they quit spreading. They told us the virus is actually the little white pearl seed they cut out. so to touch they will not spread. But if they break open or the seed gets on you you get the virus. Lake got a couple on his face from her, but the Kya and I stayed free from them. Kaysa's were spreading through swimsuits and leotards that would rub and bust them and spread them. Also all her dress up clothes. They really warned us about towels and wash cloths also. She got them playing soccer rubbing against a little girl whose parents would not have hers treated and let her expose everyone else!!!

    Anyway back to the special spot in my heart. This is how we found the wonderful dermatologist who met us to see Kya on Christmas eve at 8 o'clock in the morning and had her biopsied and an unofficial diagnosis within a week of seeing her for the first time ever! He even started the steroids and the minute he received her results he was on the phone with Childrens hospital. We were seen the next day by a rheumatologist. He is a wonderful, caring man and a fabulous doctor! His office still calls and checks on Kya. Had we not went to him for the molluscum I would have never known about him or had such a quick diagnosis!

    As bad as I thought the molluscum was, Kya's made it look mild!!! None the less, I have been there with you on the molluscum. My word of advice is to keep them covered. If they are covered with the round bandaids, they can't bust and spread! It will eventually run its course, but it could be a long one with his immune system. Numbing cream works well on them!

  2. Thank you Kalee. I had never heard of these before. My daughter was the first to get them. Passed them to Gary as they started his chemo's. They didn't want to treat them before because the risk of infection and it hurts they said. The problem is they are on his left side and I hate to say it but we are probably have a count on 50 plus. Five of them have been infected at one time or another. Then under them he seems to have a little ecezema rash that is really itchy. Itchy molluscum. Spready molluscum. LOL They have even made there way to a less desirable location. I would imagine we will wait on those. They are even inside his little bum bum as well. So we definitely have our work cut out for us. Thank you so much for your input. I know most people will read this and think GACK but it is what it is. Love Ya!

  3. Ericka,
    I am so glad to here that the great taper has evened out and he is getting his strength back! Oh did you hit the nail on the head about the "you don't look sick factor" until you stand beside someone who is....I get that alot to and everytime I get that response I wanna blow a raspberry at them or stick my tounge out....people have no idea I tell ya....I have never hardof molluscum but I do have ecezema and I use Aquaphor and steroid creams for it....oh and oatmeal baths...

    I am glad they are getting ya'll in with a Derm quick so they can figure it out....

    always in my prayers