Busy Bleeding Posts

I am doing a lot of posts huh : )  Well I just couldn't resist and not share are drama.  So a few hours ago Gary floated down from his benadryl dream.  He woke up hungry like a wolf!  He was ravinous.  Somehow, the intern doctor thought it would be cute to write orders for a liquid diet.  His dinner was broth, yogart, and juice.  Mmmmmm.  I don't think so.  Have a ever shared with you what a different person I am around my sisters?  I maintain being polite but drop subtle death threats.   "Yeah, find out why she wrote orders for a liquid diet.  Someone is gonna get it."  I heard the nurse walk back to the nurse station and say, "that mom in there is threatening me."   I called after her, "no I'm not!".  It was all in good fun and we were all giggling but......not.   I order Gary a pizza because he was truly that deseparate.  I had read it either kills your appetite or turns it up.  Guess we know which one.   He ate three large slices of cheese pizza from Papa Johns.  I was impressed.  We had to cut him offf in fear of it all coming back up.

So one of the CNA's asked my sister to move out of the bed so she could get Gary's vitals.  Sounds like no big deal I know, but I didn't like it.  I have been coming here for a year now.  At least once a month for over night stays ect,.  NEVER have the nurses asked me to move.  They have always been extremely polite and maintain that comfort barrier.  They always do vitals around the patient.  All of there instraments reach just fine in every direction.  I know I must be in a mood but, no.  No that is not ok.  He was snuggling with his Auntie which was keeping him calm.  I sound like a horrid pain in the neck, but I was at least nice about it.  I talked to the main nurse about it.  Asked her nicely to talk to her assistant.  Besides, I got mine back.

BLOOD
So soon after my chat with the nurse Gary decided he needed to go potty for the 32nd time.  I carefully lifted him out of bed.  We do business in a urinal so they can measure.  While in the middle of said business, a beautiful crimson poka dot pattern began to form on the floor.  In slight terror I recognized what it was.  Blood dripping from some where.  I panicked slightly but gained control.  My greatest fear was that it was coming from the place where we were conducting business.  That was still in the plastic urinal.  Relief one.   I went the next logical place.  The nose.  Relief two.  I still could not find it.  Out of the corner of my eye I finally saw it.  The floor was getting pretty colorful at this point.  It was coming from his IV.  The nurse had to use more than one access.  One for normal saline, the other for Rituxan.  So it was a two for one kind of IV.  Anyway, that med port access had came off!  It had slipped off so the Rituxan was running on the floor.  After I just got done chewing them out for silly indiscretions, I need them.  Funny how that works.  I am not sure if it was because we took his hospital gown off because he was hot and let it hang on the iv pole which put weight on the tubing which pulled it off.  Or the nurse did not put it on tight enough to begin with.  No matter.  We all worked quickly to clamp it off, turn the Rituxan off, and do damage control.  BAD   bad is now that he had missed some off the medicine because it ran onto the floor.  Really BAD pharmacy would have to mix a whole new batch if they wanted him to have the small amount.  Everything else like the tubing could be replaced because it was considered contaminated from being on the floor.  We all held our breath as the nurse called the pharmacy.  If the answer was he needed it would have meant a very costly accident had happened.  I don't even want to think about  how much the Rituxan is.  The news was good.  The pharmacy said its fine.  The amount that went on the floor was very little.  Can I get a praise God thank you Jesus! 

It is currently 1am.  My baby sister came with me today which always makes this whole thing waaayyy better.  We are bound and determined to not sleep over.  The infusion has finally ended.  We started it at 3pm.  They are asking us to stay for another two hours for observation.  The "team" wants to make sure he doesn't have any further reactions.  The nurse on the day shift noticed his face was slightly swollen.  His lips are a bit swollen as well.  We have had issue with puffiness all week.  I really don't think it is from the Rituxan.  I will humor them and play it safe.  Fine, we will leave at three am. 

Good luck with your infusion Summer!  Praying for you as well! 

How Rituxan Works

I found this animated video of how Rituxan works.  Interesting:  Play Video

Infusion Today

We are at the hospital today getting our first Rituxan infusion.  We got here at 9:30 this morning.  It was a rough IV start.  Had to get poked twice.  Well, really 5 times not because if you count the J-tip's and the "woops we forgot to get labs" surprise poke : ( .

  Took awhile for them to get everything straight.  It usually does.  I love it when they apologize.  I finally said but kindly said, "oh come on, this is standard procedure."  They had him down to get cytoxan.  Took a good three hours to get all that worked out.  We come back in two weeks for the next dose which will be an overnight.   My Prince sleeps once again, in a cloud of benadryl.

Just Waiting

So we are just sitting back waiting to here from the hospital when they want us to come in for Rituxan.  I am guessing it will be Fridayish.  Gary is doing just fine.  His slight inflammation has quieted down and his mood has returned to being more pleasant.  We had labs yesterday.  He got the finger poke.  This time it took hours for it to stop bleeding.  No biggie really, I mean for me.  Well I do have to battle him keeping it wrapped up but he is the one that has to deal with blood.  For a three year old, it can be a big deal.   If you ask Gary to demonstrate his impression of what it is like to get an IV placed, its pretty funny.   He mainly uses motions and facial expressions and sounds.  "Day take it and eeeerrrrrrrruuuuugghhhh", he motions to his hand as if he is holding a large kitchen doing a big stabbing motion.  "Den I doe,   AAAAHHHHHHHHHHHH, and I try (cry),".    I think it is so funny and sad at the same time.   I do think of still having a port or pic line put it but since the weight has come back off, he is an easy poke.  It is a one time poke.  We have not had to try and try again in so long.

Birthday Blog

Our birthday blog is coming up!  So in celebration we ordered what helped get us thru the beginning of this disease.  Yes, I have lost count how many times I have seen it.  It has, however, been awhile.  Gary has moved on to Caillou and other cartoons.  We wore our last copy out.  To be honest I am not sure where it even is now.  So I ordered a brand new copy.  Happy Birthday Blog.    Any excuse for a present, right? We are also approaching our 1 year anniversary of Diagnosis Day.  Yes!  Another excuse for a  present : ). 

Still Processing

I wanted to type up my blog last night but in all complete honesty I had to deal with my emotions first.  I feel bad talking to my sisters about it because they have a lot going on in their lives too right now.  I don't want to add it on.  Although I can already hear, don't be ridiculous.  I am upset because I sat down to realize this statement.  "Don't worry, we have a lot of drugs we can use."  In their attempt to comfort me when we were first diagnosed I would get this statement.   Yes, it made me feel better.  No, I didn't expect to cry when we had to switch drugs.  I realize all the stuff they are injecting him with now could potentially be causing different side effects.  I don't mean to fret but its my job.  So this is what we are starting next week.  They said we don't have to overnight it but we do have to be admitted because it takes over 8 hours.

Rituximab

Rituximab

(ri TUK si mab)  

Trade name: Rituxan^®

Chemocare.com uses generic names in all descriptions of drugs. Rituxan is the trade name for rituximab. In some cases, health care professionals may use the trade name rituxan when referring to the generic drug name rituximab.

Drug type: Rituximab is a monoclonal antibody. (For more detail, see "How this drug works" section below).

What this drug is used for: 

• Treatment of certain types of non-Hodgkin's lymphoma.
• Treatment of chronic lymphocytic leukemia (CLL).

Note:  If a drug has been approved for one use, physicians sometimes elect to use this same drug for other problems if they believe it might be helpful.

How this drug is given:

• As an infusion into a vein (intravenous, IV), over about 6 hours.  The time of the infusion may be shortened, depending on whether or not you have received this drug in the past, or how well you tolerate this drug.
• Medications may be given just before the infusion to reduce the occurrence of infusion-related symptoms.
• There is no pill form of rituximab.
• The amount of this medication you will receive depends on many other factors, including your height and weight, your general health or other health problems, and the type of cancer you have. Your doctor will determine your dosage and schedule.

Side effects:
Important things to remember about the side effects of rituximab:

• Most people do not experience all of the side effects listed.
• Side effects are often predictable in terms of their onset and duration.
• Side effects are almost always reversible and will go away after treatment is complete.
• There are many options to help minimize or prevent side effects.
• There is no relationship between the presence or severity of side effects and the effectiveness of the medication.

The following side effects are common (occurring in greater than 30%) for patients taking rituximab:  

• Fever and chills (see flu like symptoms)

The following are less common side effects (occurring in 10-29%) for patients receiving rituximab:

• Weakness 
• Nausea
• Headache
• Cough 
• Runny nose, shortness of breath, sinusitis (see cold symptoms)
• Throat irritation (see cold symptoms - pharyngitis)

A serious but rare side effect of rituximab is potential for a severe infusion reaction, typically with the first infusion (during infusion or within 30-120 minutes of infusion).  You will be given medication prior to the infusion to decrease this reaction and monitored carefully during the infusion.  If signs of reaction occur, the infusion is stopped.  In most cases, the infusion can be restarted at a slower rate once symptoms subside.

Other rare but serious side effects:

• Patients who have had heart pain or irregular heartbeats in the past may experience this again.  If these occur tell your doctor or nurse, so that they can be treated. 
• Rapid destruction of cancer cells can cause disturbances in metabolism leading to kidney problems.  
• If you have questions about this information ask your doctor.   

Not all side effects are listed above.  Some that are uncommon, occurring in less than 10% of patients, are not listed here.  You should always inform your health care provider if you experience any unusual symptoms.

When to contact your doctor:
Contact your health care provider immediately, day or night, if you should experience any of the following symptoms:

• Fever of 100.5º F (38º C) or chills (possible signs of infection)
• Shortness of breath, chest pain or discomfort; swelling of your lips or throat
• Confusion

The following symptoms require medical attention, but are not emergency situations.  Contact your health care provider within 24 hours of noticing any of the following:

• Develop a rash or sore joints
• Nausea (interferes with ability to eat and unrelieved with prescribed medications)
• Vomiting (vomiting more than 4-5 times in a 24-hour period)
• Other signs of infection, sore throat, cough, redness or inflammation, or pain on urination

Always inform your health care provider if you experience any unusual symptoms.

Precautions:

• Before starting rituxamab treatment, make sure you tell your doctor about any other medications you are taking (including prescription, over-the-counter, vitamins, herbal remedies, etc.). 
• Do not receive any kind of immunization or vaccination without your doctor's approval while taking rituxamab.
• Inform your health care professional if you are pregnant or may be pregnant prior to starting this treatment.  Pregnancy category C (use in pregnancy only when benefit to the mother outweighs risk to the fetus). 
• For both men and women: Do not conceive a child (get pregnant) while taking rituxamab. Barrier methods of contraception, such as condoms, are recommended. Discuss with your doctor when you may safely become pregnant or conceive a child after therapy.
• Do not breast feed while taking this medication.

Self Care Tips:

• Rituximab may cause temporary low blood pressure.  If you are taking medication to reduce your blood pressure, check with your doctor or nurse as to whether you should take it as usual or not before the infusion.
• You may experience shortness of breath, feel flushed or dizzy during the infusion. You will most likely receive medication before the infusion, and you will be closely monitored during the infusion. 
• For flu-like symptoms, keep warm with blankets and drink plenty of liquids.  There are medications that can help reduce the discomfort caused by chills.
• Drink 2 to 3 quarts of fluid for the first 48 hours after each infusion, unless you were told to restrict your fluid intake. 
• This medication infrequently causes nausea. But if you should experience nausea, take anti-nausea medications as prescribed by your doctor, and eat small, frequent meals. Sucking on lozenges and chewing gum may also help.
• You may experience drowsiness or dizziness; avoid driving or engaging in tasks that require alertness until your response to the drug is known.
• In general, drinking alcoholic beverages should be avoided.  You should discuss this with your doctor.
• Maintain good nutrition.
• If you experience symptoms or side effects, be sure to discuss them with your health care team.  They can prescribe medications and/or offer other suggestions that are effective in managing such problems.

Monitoring and testing:
You will be checked regularly by your health care provider while you are taking rituximab, to monitor side effects and check your response to therapy.  Periodic blood work to monitor your complete blood count (CBC) as well as the function of other organs (such as your kidneys and liver) may also be ordered by your doctor.   

How this drug works:Rituximab is classified as a monoclonal antibody.  Monoclonal antibodies are a relatively new type of "targeted" cancer therapy.

Antibodies are an integral part of the body's immune system.  Normally, the body creates antibodies in response to an antigen (such as a protein in a germ) that has entered the body.  The antibodies attach to the antigen in order to mark it for destruction by the immune system.

To make anti-cancer monoclonal antibodies in the laboratory, scientists analyze specific antigens on the surface of cancer cells (the targets).  Then, using animal and human proteins, they create a specific antibody that will attach to the target antigen on the cancer cells. When given to the patient, these monoclonal antibodies will attach to matching antigens like a key fits a lock.

Since monoclonal antibodies target only specific cells, they may cause less toxicity to healthy cells.   Monoclonal antibody therapy is usually given only for cancers in which antigens (and the respective antibodies) have been identified already.

Rituximab works by targeting the CD20 antigen on normal and malignant B-cells.  Then the body's natural immune defenses are recruited to attack and kill the marked B-cells.  Stem cells (young cells in the bone marrow that will develop into the various types of cells) do not have the CD20 antigen.  This allows healthy B-cells to regenerate after treatment.

Since Gary just came off Cytoxan, we need to give his bone marrow a chance to recover.  

Rituxan

We are back from our appointment.   We are starting Rituxan next week.   Processing............

Labs and Swelling

Yesterday we had labs.  They were suppose to be the day before but God orchestrates. The day before yesterday I decided it was too rainy to go anywhere.  I didn't want to leave the house.  So I didn't.  We woke up yesterday though, and rain or not, we had to go to Seattle for labs. (Pictured above of Seattle Childrens Hospital).   Gary had a funny start to the day.  He came down, said, "Mowning Mom".  We exchanged kisses.  He crawled up onto the couch to watch cartoons.  All was well.  He watched one episode of Dora.  So 30 minutes had gone by.  I glanced over at him to see a slightly different looking kid.  His face was swelling.  It wasn't dramatic but enough for me to notice.  I did an examination.  His fingers, especially his pinky were also swollen and a bit redder than usual.  This is always the fun part.  (Think I may have typed this very sentence before).  I need to try and figure out if we are just having a bad day or are we about to have a break thru flare.  MY definition of a break thru flare would be in regards to his medicines.  Up till today, he was looking great.  It was determined we would not run another cytoxan treatment to see how he did.  We are not even due for a cytoxan infusion if we were going to be continuing them.     Since I was headed to the hospital for labs anyway, I entertained going and pulling out the docs again (we pulled one out last month for his hemorrhaging capillaries in his cuticles).  I don't like doing this because I often get the "shrug"   and the "I dunno's", so what is the point.  As the day went on it didn't get any worse.  I didn't have a nurse or doctor check him out.  I did however call when I got home because something was just nagging me.  I called and left a message asking for a nurse to call me back with the results of his labs.  I told them I was a little concern with some swelling and active rash going on.  If his labs were ok, then I would give another day or two to see how he does.

They weren't good.

A few have popped up.  His ALD went from 6 to 11.  His AST went from 43 back up to 52.  His white cell count is really low but I am not surprised by that.  That is from the chemo's including cytoxan.  There were a few others that were up.  With the low white count just confirms with stomach flu going around school to stay out of the hot zone.  Anyway, we are going back in today at 3:30 for a clinic appointment.  I am not sure what   they are going to want to do.  Maybe pulse him with steroids.  Maybe give it a little more time.  It drives me batty trying to figure out why.  Is it sun exposure?  Is he so intolerant of the sun that I shouldn't let him be out there?  Is it really his disease breaking thru the meds?  ?   ????    ?????

"Wow, he looks good."
How kind of you.  You look good too.  Yes, it is such a nice thing to say.  What do I want to hear?  "Wow, he looks terrible." ?  No of course I don't want to hear that.  I have had issue with this for awhile LOL.  Because it is ridiculous to take any kind of offense, which I don't, but.    But I am the one griped by fear.  I am his mother.  I have to sit here and rationalize every whimper, every cry, every dot, every rash, all the swelling.  Rationalize it.  Come up with what it could be instead.   He woke up from a nap on Tuesday when we were suppose to get the labs done, crying and screaming, saying Ouchie.   He wouldn't let me touch him.  Nothing I did helped.  It reminded me of day one, when he would lay there and just cry and cry.  I feel helpless and worthless.  I rationalize it, "O  all kids cry when they wake up from a nap.  They are just mad because they are still tired."  Yeah, well add "ouchie" and clawing at your legs and arms and neck because you are burning and itching is not something all kids do.  But he can't put the words together because he doesn't even know how to make a proper sentence yet.  I can't wait for the day I will be able to ask him, "what are feeling, where does it hurt, what kind of hurt, what can I do to help you?"   And he will be able to tell me.

So I got it.  Instead of "WOW he looks good!", I prefer, "Looks like he is having a good day : ) !"

Methotrexate

Last week after Gary's methotrexate shot, he slept in a little, complained here and there about his tummy hurting.  Yesterday was his shot day again.  He slept till noon today.  He has been saying my tummy hurts.  I always thought we were so lucky because he didn't really show any signs of the side of effects, till now.   Nothing serious.   I thought last week it was just a coincidence but happen again this Thursday.  Thursday will have to be our new down day.

We heard from the doctors regarding the cytoxan treatments.  The question of whether or not we were going to do another cycle all depended on Gary and how he was doing.  His levels were good.  He looks pretty great as far as skin.  He does have a few bleeding scabbed up cuticles on a few fingers.  In my Dr. Mom opinion, I do think it is a good idea to not run another cytoxan treatment (no it has nothing to do the HELLisptal).  I do think the JDM is slightly smoldering.  Very low.  Very quiet.  That does concern me that over the next couple months without the cytoxan, we will just have another repeat of mild symptoms coming on gradually.  Like the small dots on the insides of his hands and all over his face.  Gradual weakness returning but not blaring, just enough to make me worry.  BUT we can't know until we try coming off the cytoxan.

Gary and I are on our way (sunblocked, hat, and sunglasses) to celebrate Earth Day and pull some weeds in our community.  Have a wonderful day.

A Year Ago Today

Today is April 19, 2010.  It was a year ago this day that the symptoms of Juvenile Dermatomyositis appeared.  Someone needs to come up with some protocol on what to do with these anniversaries.  I say celebrate.  Not celebrating the fact its a rare autoimmune disease or all the hospital stays.  I say celebrate we have made it thru it.  I think I will get him a cupcake.  Something that says, "good job baby, none of this is easy and you are so brave."   We also have D Day.  Diagnosis day.  Yes! We will be celebrating both.

His lips felt funny because they were swollen so he kept flexing them.  

Trauma

We had our over night infusion on Friday.  Gary did well.  He is starting to be a bigger boy.  He realizes that sitting still and cooperating while they jamm a huge iv needle into his hands, well is just not necessary.  I am so proud of him.  He has found his fight.  He kicks, grabs, twists, turns, screams, yells, and cries.  He has always looked like a fighter but would really just gave his little hand over.  He would still cry but never really figured out he didn't really need to just sit there.  It does stink for everybody else, well and him because we had to do a wrap down on him.  They take a blanket and swaddle him.  Similar to the way they wrap a newborn.  The best part of it all though is the prize box.  When the tears and the heavy after burn sighs had passed, he picked himself out Seattle Mariners hat.  He looked so adorable in it.  The got his meds going which made him sleep and sleep. We struggle with his blood pressure all night.  Usually its to high.  This time it was to low.  At one point it was 95 over 25.  They kept a close eye on him.  A doctor came in at two to look him over and listen to his heart and repository counts.  It started coming up here and there.  I began to wonder if they gave him a little too much benadryl intravenously.    My favorite part was our roommate.  I feel bad that for all the families that are forced to share small rooms.  The baby cried nearly all night.  It was actually a bit traumatizing for me.  We had the inside of the room, the side without the bathroom.  Which meant if Gary or I needed to use the bathroom we have to go into there side of the room.  Literally walk thru there space to get to the bathroom.  I used the bathroom out in the hall so I didn't have to disturb them.  Then every time someone would go in or out of the room, they failed to close the door.  All night long.  We were in a busy part of the hall so I was forced to get up, over and over and over again to close the GOSH DARN DUMB SMELLY DOOR!   I was losing it.  But it was only for one night, so I held it together.  Unfortunately that just deepens the pure hatred of having to be there.  I pray that the SCH expansion eliminates ALL shared rooms.  Especially when they think it is a great time for a weigh and measurement check of a sick baby just happens to be at midnight.  Strip the poor thing down to nothing once she is sleeping.  Yep!  I would scream too baby girl.  Anyways, I still don't think I have recovered.  On a much happier, lighter note, Gary's appointment when well.  His levels are good.  He has only two that are still elevated, but only slighty.  His strength has returned since we began cytoxan.  So it seems to be his drug of choice which is not the greatest because its not exactly good for him.

Thank You

We raised $235.00 dollars in honor of me turning 30 again. Thank you to everyone for my birthday presents  : )!

My Favorite!

Three Shopping Days Left

My Birthday

Normally I don't go around telling people, "hey, guess what it's my birthday!".  I find that irritating.   I also find it irritating when it is your birthday and you don't tell me.  You can't win, so don't try.  Did I just let the cat out of the bag?  Surprise, I'm a brat.  Don't worry, I drive myself crazy.  So its seems like just yesterday I was turning 30.  One blink and BAM I am 30 again.  What do you know.  Now I know you have all been counting down the last 365 shopping days to my birthday.  I know what to get me?  Hmmmm!  I have a wonderful birthday gift you can give me.  (I know how kind of me to make it so easy on you).  In honor of my birthday consider making a donation towards my run in June.  Click HERE  to make a  donation to help find a cure for Juvenile Dermatomyositis.  Now if I run into you, don't let it get all awkward when I ask, "soooo, where's my present?".  You will be able to say I got you a present.  I am helping finding a cure.  Well won't that just shut me right up. And if you really feel like getting me more, *shrugs*,  I will take a case of wine and a case of wrinkle cream.  Great Thanks.

Easter Re-cap

Easter was good.  Gary had a lot of fun during our egg hunt.  He got a head start before all the older kids.  I had to hop around early in the morning.  I was went to bed at 1am the night before, helping the Easter Bunny out.  He likes me because our initials are the same,  E.B. : ).  Up again at 6am to hide them.  With wet hair and a towel on my head hiding eggs in the yard.   The kids had to wait until dinner to hunt them.

Last week I did post on the Cure JM board about some brown spots in the cuticles of his fingers.  This was on  Friday during the lab draw.  After discovering the tiny spots and over grown cuticles I had the rheumatology staff hunt down a nurse or a doctor to come take a look.  See if they had any input.  Naturally I tend to freak out at anything new or returning.  Especially in the middle of course of cytoxan.  The spots I knew what they were.  I didn't need them to tell me.  They are hemorrhaging capillarey vein in his nail folds.  A disease activity indicator.  One of the disease indicators that is.  The cuticles are overgrowing again, like in the beginning when we were first diagnosed.  So it is not like I haven't seen them before.  I have calmed way down over the weekend.  I was concerned especially when the doctor that did come out to look at them asked if he hit his fingers on anything.    As always I am nice and forgiving.  But then my inner dialog starts when the logic is processed.  Wow.  Really, did you just ask me that?  I know everyone has a process.  She was super sweet for coming out to the lobby to see us but our only answer was "I will email the last person you saw in clinic."  I thought of pushing more but we are the middle of cytoxan like I said before.  His labs are great, his strength is good, and the rest of his skin is on and off.  Not much more to be done right now without changing or adding or increasing something and in my Dr. Mom opinion, I don't see that being necessary at this time.  But in the back of my silly mind thoughts like, 'is this new activity?  a sign of what is to come? is this the start or the end of a flare?'  Madness.  A symptom of being a mother is torturous thoughts.  You have to admit though, you can't blame given his past.  I have to sit here and think, next month could we have to go back in the hospital?  What if?  I have a fire extinguisher in my head.  I have pulled the pin and am putting that thought out.  Because it is a waste.  A waste of fear and anxiety.  My fear and/or anxiety will change nothing.  Even if it does happen.  My favorite however, is looking back when you are knee deep in it and saying, "remember that day at the lab,  uh huh, yep, told ya!".  Besides, lots of other stuff I can throw my fear and anxiety at like, oh, I don't know, earthquakes, or I got it! Bills.  Or how about money!  Yes, that gets my heart pumping.  And its not about having too much of it if you catch my drift. Ha ha.  That's a favorite.

Give it to God.  

Update on Make a Wish

This past Sunday 2 Make-A-Wish volunteers came to meet our family.  It was very exciting.  They both were very nice.  They brought presents for all the kids to make all of them feel included.  Gary has been granted a wish.  It will just be deciding what that wish will be.  I had mentioned in a previous post I was concerned about Gary's lack of speech and not being able to clearly communicate what his wish would be.  To my relief, they were not concerned about this.  We have time to decide what will really make him happy.  Since we know him best, we get to have a lot input on his wish which is exciting.  We are brain storming things like outdoor play houses, or a playground that is sun protected or maybe both!  It was such pleasure having them at our house.  They will be returning soon to talk over our idea's.  Thank you Ken and Cherelle.

Birthday Pictures

Yesterday I took Gary to have his third birthday pictures done.  We get them done at Picture Me in Walmart because they have a background we have used for the past 2 years.   Continuing with our tradition, we went there.  They took some very nice photos.  It was actually pretty emotional.  It was this time last year, that I knew Gary as a healthy boy.  When there were no troubles or no worries about his future.  A few pictures she took were of him holding a football.  His little fingers wrapped around the tip of the football showing each red little finger.  Reminding me.  Almost yelling.  Those little red finger were causing me flash back of the past year.  Tears came to my eyes.  I didn't share with the photographer/sales girl what he had, or where we had been.  I kept it to myself as she asked how I liked each picture.  I had contemplated not having the pictures done because he woke up with a swollen face.  Puffy eyes, puffy lips, rashy skin.  But I thought you know, we don't get many clear days so I decided just to have them done.  He looked just fine in the pictures.  One of my favorites was a lite silhouette of him looking up to the left on a black background.  Think a few tears ended up escaping from my eyes at this point.  I felt a drunk happiness from being blessed with him.  I felt sadness for everything he has been through.  Then they started sobering me up with prices LOL!  I could spend 500 and get the gold package.  I laughed or rather cackled out loud, placed my hand on the back of her shoulder and apologized for laughing.  I told her that I had not planned to spend that kind of money.  They  do an excellent job of flipping to the next package, as if 400 and 300 or even 100 is any better!   ha ha ha   Sorry,  single income people,  supports 6 people.  I felt like asking can I put him back up there for a second a snap a shot with my camera?  LOL   I know,  cheap   cheep cheep.     So I ended up walking out without any pictures.  I will bring my husband back.  He's my bull dog.  He doesn't mind the award sales pitch being thrown.  He throws one all the time and is very good at it.

I also wanted to share that I had his haircut done before the pictures at Sport Clips.  He did so well holding still.  He was so excited to sit in the chair like a big boy.  The gal cutting his hair was very nice.  I immediately started explaining that he has had about a years worth of a few different chemo's.  So if she saw any spots or hair loss to let me know so we could discuss what would be the best haircut.  She looked him over and said it looked pretty good.  She was expert.  I explained he does not have cancer but a rare autoimmune disease.  She returned with connecting emotion that she too suffered from an autoimmune disease called Alopecia.  Where the body attacks hair growth?  So essentially she had no hair.  She was diagnosed at age 2.  It was nice to talk to her about her story.  She said that she had been treated for years and was done with fighting it. She was beautiful and to look at her you could not tell at all.  Full head of hair, I would never guessed it was a wig of any kind.  She was also a Grandma which I found hard to believe.

Next Overnight

So our next overnight infusion is on the 16th.  I can't believe it is already April.  We had labs on Monday.  He did well.  He got out of there quickly. We go back in tomorrow for another lab.  I have had a few nagging concerns.  The day before yesterday Uncle Bill went to lift him up into the air like he always does, and Gary immediately began screaming and crying  owie owie owie for a several minutes.  He would not let us touch his left side.  I gave him time to recover.  I am still not sure what happened.  I was concerned about a cracked rib or something of that nature.  But he started playing and wasn't complaining after that.  So I dont know.    It is the same thing with his ankle.  We have an xray order waiting at Children's because he keeps limping on it from time to time and it is bigger than the other one.  But he runs and jumps on it so hard to decide whether or not to shoot him with some radiation.  So again, I am not sure.  I will keep an eye on it.   That's what us mothers do : ).  Sometimes I wish my imagination was impaired.  Like the other night when I was running.  My husband, who is good Dad, took my daughter to her swim lesson, along with Gary.  I had this lovely image pop in my head, "oh no, what if Gary falls in and he is not paying attention, and now Gary is floating at the bottom!"    My best friend was there too so I put it out with that thought. She happen to call me as I finished up.  "Can you see Gary?"   "Yeah, he's right here."      Hee hee.

Well it is that time of year again.  The icky ol sun is back to reek havoc in our lives again.  I sorta wish I wasn't a sun worshiper but I am.  It would make things easier if I weren't.  Big brother had baseball practice this morning.  We covered up hat, sunglasses, ect,.  After about an hour in the early morning sun Gary's fingers began to swell. Then his lips.   We had to abandon practice to get to him safely indoors.  Things will be ok. We just have to find a way to make it so he can be outside.  He can it just is a risk.  

MAKE A WISH!

Gary has been selected to Make A Wish!   Well selected or rather approved to make a wish thru the Make A Wish Foundation.  I emailed them because Gary loves being outdoors and in the the sun.  Our backyard is not shaded so I feel like he can't be out there safely.  So if Mommie could wish for Gary, it would be to wish for some sort of sun protected yard or area he could play in.  However, I know it doesn't work like that.  It is what Gary wants.  Well, he wants to live outside so, you know.  Our backyard is a little bumpy as well.  We have tried to flatten it out but the previous owners kind of had some stuff they put back there so a lot things sank into the ground, making it very treacherous to walk around, let alone play.   We removed all the trash and debris.  We have worked on it the best we could but ya know.  So thank you Make a Wish for considering my special boy.

Birthday Recap

It has took me a few days to get caught up on things.  Gary's birthday was great.  He got lots of nice presents.  He is feeling pretty good these days.  The Cytoxan, IVIG, and steriods helped out tremendously.  His levels are good.  One is still hanging out elevated but his skin is quieting down nicely.  The plan is to do one more intravenous dose of Cytoxan next month, then re-evaluate from there.  For this hospital stay I brought along my sign "IMMUNE COMPROMISED PATIENT".  Just a gentle reminder to our nurses not to put us with anyone coughing, sneezen or wheezen please.  They were very understanding about it.  We also were told that rheumatology is going to do there best to keep us seeing just one doctor on a more consistent basis.  I am not sure what sparked this but it is a good idea!  We will being doing labs this month on the 10th, 14th, and 21st days after the Cytoxan.  (Sometimes I write this useless information down for myself so thank you for being patient with that,  ha ha patient  get it  snort......alright dumb pun  : (  ).   

We were in a double room but it was pretty quiet there on Friday night so we had no roommates.  As usual I always feel like I got hit by a train when we get out of there.   I got the pleasure of chatting with a view rheumatologist who came to check on him.  I always try and ask questions that are on my mind.  What I forget is that no one has the right answer, not even me.  I asked if sun exposure triggers muscle weakness.  She said that she didn't think so.  That was not the impression or what she had observed with the other JDM cases.  I don't happen to agree so where do you take that one.  Shrugg and giggles.  On Saturday we were asked to hang out for just a little bit because Gary was sleepy while the IVIG was running.  They hadn't seen him awake so our nurse gotta call asking if we could wait another 30 minutes before discharging, just to make sure.  He was really pale.  But he usually is during infusions.  Stuff makes you feel icky. 

Birthday RECAP

So we returned home Saturday evening.  Not without a stop a Toyrus however.  Gary picked out a mit and baseball,  styrofoam airplane, and mini kite.  He was very happy to see everyone,  including his Grandma from Oregon had come for weekend. I love surrounding him in LOVE.  It is the best medicine.  It gave me a chance as well to go blow off some steam and do a 4 mile run.  Yes, only 4 miles.  I fear I have been battling a tight muscle of some sort that is messing around with my knee.  I have not been able to get my miles back up there but it will work itself out.  I love it because I know I am gonna sleep like a baby after coming home from the hospital but add some a run on top of that and a glass of wine with dinner, oh yeah, coma city sweetheart.  That is the best kind of sleep.  

The next morning Gary and I woke up early and went to Uncle and Auntie to have a birthday breakfast with Grandma and Grandpa.  They were unable to come because of work so we had a birthday breakfast.  Gary got his big present from his Uncle Ray. A power wheel!  I am so blessed by my family.  I am so grateful. Gary loved it very much.  Well, at first he was a bit scared but he is now a pro.  He has gotten so good on it we were able to hook up the turbo on it.  Gary calls it his truck.  Grandma and Grandpa then took us to the store and bought Gary Wii Resorts.  He pretty much plays it hours on end.  I would oppose to this normally but the physical exercise the Wii gives you is a plus.  That evening we celebrated with the rest of the family.  He got lots of nice clothes.  Grandma Bradford got him lots of nice hats to wear!  Yay!  Gary did well. I was worried he would be a little cranky after all the meds, but he's 3.  No one can be cranky when they are getting loads of presents on your third birthday!

Blowing out the candles on his cupcakes that he picked out.

THE BEACH

Gary is into kites right now.  After his birthday, he has a total of about 8.  Yesterday it was a very nice day.  So we lathered the little man up in 70 block and headed to the beach down at Ocean Shores.  I love our state.  In an hour and 30 you can be at the ocean going in one direction.  Head the other and you can be in the mountains in the same amount of time.  How awesome is that.   We spent about 2 hours or so there flying Gary's new kites.  It was good to get him out of the house.  He had a great time.  I was a little freaked out about the sun.  But we kept it very limited.  Not only is Gary sensitive because of his Juvenile Dermatomyositis, but all the medications he gets, there are a few in there that also make him sensitive to the sun.  He still doesn't understand why the kites won't go up here at home.   He was yelling at me yesterday, wind! Wind?!   What do you want from me kid?  So I blew on him.  Not a good idea.  Even three year old's are in touch with sarcasm.   Don't worry, he always wins.  

Exchanging smooches on the beach!

Flying a kite by the fire on a early spring day.

HAPPY BIRTHDAY TO MY 8 YEAR OLD

Happy 8th Birthday Elexis! We love you!

A Letter

Hi Erika,

It was so nice to spend time chatting with you yesterday after the IEP
meeting. You, Gary, and your family have been on my heart even more since
our conversation.

Today during speech, McGuire came in super excited to share something with
the group on Youtube. He showed us the video montage you made of Gary. 
After we watched, I asked Mcguire if it would be ok if the girls asked any
questions they had about his brother (since he was so excited to share and
the girls curious about why he was in the hospital). It was a great time
of sharing.

The video you made is so beautiful. Afterward, I spent a quick moment on
your blog (since I'm working I didn't want to linger too long!) and your
entry about your marathon brought me to tears. I wanted to thank you for
spending time yesteday sharing about Gary, his illness, and the journey
your family is on. I look forward to spending more time reading your
blog. I believe that your words and the process of sharing your journey
will bless people beyond measure. Your family will be in my family's
prayers.

Can you imagine how this made me feel?  Thank you for blessing me back.  Thank you for your words.  These words if only for a moment put it all in prospective.  A prospective of encouragement.  This encourages me to keep doing the best that I can.  Keep working, fighting, living, and loving. These words are a huge hug from God, thru you.  Thank you for taking the time write this and brighten my life.  

Good

Gary is doing really good.  His energy is that of a normal almost three year old.  He has been playing hard.  The only thing I noticed were stairs are hard for him again.  He may be starting to run out of steroid juice.  We go in and fill our tank on the 19th.  It is our overnight stay for Cytoxan.  Everything is so gradual.  Ever so slowly starts to slow down, so its barely noticeable.  That is wear it really hit us.  I didn't notice before because it is just small things.   The question that is asked, "does he ever stop, slow down, and rest?" .  My Dad use to ask us that when McGuire was like that.  McGuire's energy was endless.  He would even jump in front of the TV to interact with the action that was going on.  When Gary was pulsed a couple weeks ago, he was running and jumping.  For a moment I thought he might run right up onto the wall.  I love it.  I hate it in the same breath.  He needs steroids to have energy to be a normal kid.  No need to dwell.  But acknowledge it in my thoughts.  I have also noticed a change in his gestures when he swallows food.  We are no stranger to what is called dysphagia.   Difficulty swallowing.  No choking though like before.  Just something only I would notice because I am his Mom.  So here is what I suspect:  If this was a "flair" or his disease trying to kick it up a notch, it started the way it did when he was first diagnosed.  Started with a rash or in this case an ulceration and signs of deterioration of the skin.  When he was first diagnosed, the muscle weakness didn't hit until then end of May, so weeks later.  Despite heavy doses of everything, he still had the muscle weakness hit and hit hard.  So the small difficulty he is having swallowing and stepping up and down steps may so right along how it works.

Prayer Request:
Mason is in the hospital with an infection of some kind.  He is feeling better.  Praying for the Smedleys.

Long Infusion Day

We had our infusion day yesterday.  It was so long.  Seemed like it took forever.  Gary is doing good.  He looked terrible when we got home last night at around 830pm.  He was really pale, hungry and tired.  He wanted to play Wii.  He tried so hard to get out of his druggish stupor.  We all had to be patient.  He ok We ate about 1000 goldfish.  He had the steroid munchies, mine was lack of control.  Least it wasn't M and M's this time.  I will refrain from complaining that we were scheduled for a 1215 so I didn't get around to ordering him lunch until 130.  We were busy doing IV stuff, getting things going.  I asked, I need to order him something for lunch.  He can't have an empty stomach with all these drugs, and steroids going in.  Sorry they said, they stop taking orders at 1:00.  Here is where I struggle with myself.  I say "Oh" politely but on the inside it's not ok.  I know there is a way to go about getting things done.  The discomfort sometimes for me is more than I can handle or at least choose to.  I find this a rediculous quality about myself.  I can't leave him to go the cafeteria to get him something.  I asked can I take him there (just wheel his IV pole on down, grab a cheeseburger and be back in 10).  They said no.  They have crackers and milk and things of that nature, but that only goes so far.

MISSION
To eat all the crackers and make them sorry for not considering we were their ALL day.  Gary ate about 20 packs of Goldfish.  I put back about 20 as well (meaning we ate them).  We were making headway when the person who stalks the drawers came along.  The drawer was full again.  I was so discouraged.  I am the typical spoiled American.  Not only should I be thankful we have crackers, but we are able to receive healthcare.  Didn't I start this by saying I will refrain from complaining.  I have learned my lesson.  The infusion clinic stops serving after 1pm.

Gary's armpit is looking good.  It will be awhile before it heals.  Remembering back to when he was first diagnosed, he had the same start of an ulceration right about his belly button.  It was small but took forever to heal.  He now has a little scar there that looks like a hole.  I suspect this one under his arm will do the same thing.

I love the picture.  It says, pale and crazy, don't mess.