I'm here!!

Yes...I'm here AND I'm blogging from a computer!!!!  WHAT?!  The very first time!  I wasn't even sure how to log in.  ha.  Anyway...what does that tell you...?  It tells you that I'm spending LESS time at the doctors office!  WOOHOO!!
The steroids are doing their thang!  The other day Mavy's platelets where 229,000.  I did NOT type that wrong...can you believe it?!  I couldn't...well above normal!  I just wanted to hug the doctor.  I was really worried because I've had the hardest time getting the medicine into him.  Twice a day and I dread it every hour leading up.  He hates it and I hate it.  Everyone hates it.  I have to give him two different meds and the first few times I swear not a drop stayed in his mouth.  So I had to google a way to give meds and keep the babby from spitting them out!  I literally have to hold the poor boy in an arm lock and use my finger to hold his cheek open until he swallows. I feel like I'm abusing him!!!  but after that number...I know it's all worth it.  So now (again) we wait.  He did week 1 at a high dose morning and night.  Week 2 has been a high dose in the am and a lower dose (not by much) in the evening.  Each week should be less and less until he is done and then we hope and pray some more that the numbers stay up!

Ok...I have to get back to work while I can!

50% of my brood is down!

Good grief! I seriously need one of those space man suits from the movie ET. Actually. I need 6. 4 of them half size.
Mahala is sick. 102 temp and I'm trying to remain calm. Not let her see I'm panicked. Although I slipped when I took her temp and 20 seconds later yelled...dear lord!!! Your sick!!! Go get a book and lay on the sofa in the front room. Daddy has to take you to the doctor. Then she asked...are you sending me away because of maverick?!? I didn't know if I wanted to laugh or cry but when she and I met eyes we both cracked up for some reason. I told her yes. That was exactly why and she could never come back. She chuckled and said. K. Love you too mom.... :) Don't they say laughter is the best medicine anyway? Your contagious before you seem sick mostly so at this point...what's the point!! I just keep telling myself...it's fine. Just keep them a part. However. It's really hard to give each sick baby the loves and cuddles without feeling the need to sanitize your entire body in between.
They tested her for strep and flu both negative but treated her anyway because of Mav. So at 9:30 last night I'm sitting at the kitchen counter with her and a bowl of soup. I pull the medicine out of the bag and it's pills!! She has never taken pills! Coco has but not M. I gave the bottle a lil shake and her head flew up from her soup bowl...WHAT!! Pills?!? I say yes. You can do it...! I take one out and lay it on the counter for her and crack open a bottle of water. She picked it up and looked it over and says, are you SURE this is right? They didn't mess up?? I don't wanna end up like Michael Jackson mommy! Martin assured her that he did not die from antibiotics... (that's one for the memory jar though). She did it just fine and is sleeping peacefully. Now I have to figure out how to keep her in her room as much as possible...!
At least we had a great day on her field trip before fever struck!

A Sunday blessing.

Today has been insane and it's not even over. I had 4 sessions. Yes. A full work day. I can't remember the last time a day wasn't broken in half for a trip to fairfax to draw blood.
We started the steroids yesterday. I delayed it a day because I'm a big ol whimp and I don't know if it's from that or what but he is a cranky boy. Doesn't want to sleep unless it's while nursing. So on top of 4 sessions I think I've had 12-14 nursing sessions already AND it's sweet little Solana's 3rd birthday. We are heading to the Japanese steakhouse for birthday dinner now. With everything going on her birthday snuck right up on me. I feel so unprepared. However I'm hoping at 3 she won't notice. Dinner and presents...we did manage to pull together at least. We bought her a bike and doctors kit. I'm fully expecting her to run over one of her sisters just to play doctor.
In between all the madness today the awesome immunologist that we met on Friday took the time to call me. On a Sunday! The panel of tests he ran on Mavy's immune system all came back perfectly normal. That means that now we've been told that his bone marrow AND immune system are all in healthy working order!!! He said that he doesn't think this is any sort of autoimmune disorder and that he thinks all this will resolve itself eventually and the steroids will help keep him stable in the mean time. I'm so excited to hear this news and so scared to believe it too. I feel like every time we've gotten good news it's always followed with some bad. I asked him why is Mav so neutropenic (low white cells that fight infection) because if he only has ITP that isn't something ITP causes. He asked me when his neutrophils started to drop. I said on the march 14 blood count. The day AFTER his first IVIG treatment and he said ah yes. I've seen some studies where dropping neutrophils were a reaction to IVIG! Hearing that made me feel so much better. I hope he's right...

Today is the day.

Today is the day that we agreed to start steroids. I guess we didn't hold out very long. I talked to 4 different doctors about this before deciding. A hematologist, an immunologist and 2 pediatricians. Everyone told me the same thing, that this was the next best step and that babies do very well with them. They are hoping that he won't need them any longer then a month and the all the side effects like bone weakness ect mainly happen with people on them for a lot longer. So, here we go.
The first week will be a higher dose and then it will drop each week. His platelets dropped to 41,000 today. That's a drop of 43,000 in 8 days. Atleast this is a medicine I can do at home. The thought of another trip to the sedation unit and another IV treatment makes me nauseous... This also eliminates the risk of getting sick at the hospital, infections...ect. Less office visits... I'm still trying to convince myself we made the right choice, can you tell?!
His ANC level did go from 240-1400!!!! That was AMAZING news! It figures it would go up on the day we meet with a new specialist, an immunologist for that exact thing. Either way. We were very pleased with the idea of a second look and set of ideas on Mavy Man. They drew more blood and are going to look deeper into his immune system and how it's functioning since typically ITP does not bother the white cell count.
So...it was a long day of doctors! I did manage to get the final family passport!!! Woohoo!!! I pray PRAY PRAYYY Mavy is well enough to make this trip in June. It will absolutely crush the girls to cancel the cruise to Alaska. Mahala has asked me 10 times already if we can still go. I'm already trying to figure out how to keep a mask on a 6 month olds face on the plane ride...I don't see that happening. :( I can't think that far ahead right now. I need to only think about tonight. I'm going to need all my energy to actually give my tiny baby his first dose of steroids :(

Big words...big words...big words.

I swear. If you looked at my iPhone google history you would think I was a pre-med student or something!

Today we took maverick back to the hematologist. In 5 days his platelets dropped from 84,000 to 54,000. What a depressing appointment!:( if that wasn't enough his neutrophils dropped even lower.

Anything below 1000/1500 is considered Neutropenia. Neutropenia (noo-troe-PEE-nee-uh) is an abnormally low count of neutrophils, white blood cells that help your immune system fight off infections.

Maverick's number: 270 :( putting him in the severely low category.

The doctor gave us the option to start steroids and we declined. As a parent with a sick baby I feel like there is no right answer. I feel like all day everyday I pray and hope they just give him something to make it all go away and then when they actually give me a drug and tell me all the darn side effects...I don't want it. It won't "fix him" (from what I understand it will help the platelets but not the white cells) and the dosage with his age sounds like a guessing game and the side effects sound way worse than where we are right now. There's even meds for the side effects of the steroids....
So. We said no. The doctor said that was fine for now.

So with all that said he mentioned the words "evans syndrome" and I'm pretty sure I didn't hear anything after that. Yeah. He said its too early to diagnose him as Evans but we can't rule it out. Well...WHY THE HECK DID YOU MENTION IT????

I have read about Evans and it scares the CRAP out of me. It's a rare autoimmune disorder in which the body makes antibodies that destroy the red blood cells, platelets and white blood cells for no reason. Forever. No cure. Most treatments don't even offer complete relief. I can't even imagine. I know I'm getting ahead of myself but it's what I do. I prepare for the worst and hope for the best.

With every pregnancy I always had the fear that I wouldn't be able to devote enough time to each of my amazing little babies when the new one arrived. I feared that they would feel less loved and important and resent me or the baby. Since maverick has been sick I've seen that come true in so many ways. I know it's not my fault and can't be helped but with something like Evans...that would be our life. Forever and ever. So thank you mr. hematologist for giving me something else to worry about...

My sweet boy today. How can somebody that is sick be so happy?! I don't get it...

84,000!

Mav's platelets were 84,000 today!!! His white cells were down a little but 84,000 woohoo!!
She said it might drop again but that hopefully not as fast since IVIG isn't a cure. It's a treatment and how long it last just depends.
Spring break week so we took everyone. His foot prick was a group effort!!
So we actually get a tiny break. We don't have to go back until Wednesday unless we see any new petechiae rash. Let's pray we don't!!:)

Bad dreams.

Mav woke me up this morning having what I guess was a bad dream. He woke up to eat at 4am and I just laid him in bed next to me. Around 6 I woke up and looked over and he was whimpering and doing that short breath you do after crying but he wasn't crying. At first it looked like a seizure or something since he wasn't crying so I picked him up really fast and woke him up. Finally he looked up at me and smiled. Scared me for sure! At first thought I was like, what can a 4 month have bad dreams about?!! Then on second thought with what he has been through...it's no wonder! So many needles, nurses, doctors...my heart just hurts thinking about it. No child should have to experience things like this! I pray everyday that he isn't old enough to remember any of it.
During the last 26 days I've tried so many times to find the positive sides of this situation. His age is the only one I can ever find. I've never had to say no you can't ride that bike or play that sport because your blood won't clot. I'm not chasing a toddler terrified he will bump has head on a coffee table. He can't talk. I don't have to hear him yell mommy no! Mommy hold me! No more! I had to hear those exact words from a little boy about 5 years old at our last office visit and my heart physically hurt for that mommy. Then as we stood side by side making our next appts we glanced at each other, faked a smile and moved on. I can still hear his little voice. I feel so lucky har I didn't have that factor making this even harder.
Getting ready for our next blood check today. PRAYING FOR SKY HIGH NUMBERS MAVY MAN!:)

:) :) :)

I'm shaking I'm so happy right now! Just got off the phone with the hematologist!! His marrow is completely NORMAL!!!! It even showed it was working overtime to fight.
She said he has a bad case of ITP at a very young age from a virus or vaccine. The rash was noticed 48 hours after.
It WILL GO AWAY!! Don't know when but he will stay on high watch until it does. They will keep treating with IVIG or steroids to help him along and keep bleeding and infection at bay.
I seriously am speechless right now. No words! Just a weight lifted and all smiles.
I owe sooooooooo many thank you's to people for support, prayers and love. You all helped me stay strong!! <3
So, this isn't the end but thank you god...there is one in sight!!!! :)<3

Trying to occupy myself...

Today we will get results that could change our lives forever. Here are the possible options from what I understand and I may not. I don't know anymore. All the big words sound the same right now.

1. This could all be from a dang virus!! This is what everyone is hoping and praying for. He does have 3 big sisters! I say this with lots and lots of love but lets face it...school aged kids are walking germs! If its a virus then we wait it out. It runs it's course and his body will fight it off. Steroids or IVIG to keep him in a safe area platelet wise.

2. It's something else. Something that doesn't go away. I don't wanna talk about that yet.

The doctor told me and I keep hearing this replay over and OVER in my head and I keep trying to remember the look on her face like was she being honest or just trying to keep me positive...? She does NOT think its leukemia. He's just to healthy looking. (yes. That was her doctor degree diagnoses and I gotta believe her) BUT that because the IVIG treatments aren't giving him a huge jump or recovery in numbers that they need to consider other treatment plans like steroids and they can't give those without ruling out certain things like leukemia. I asked what else the bone marrow test will show and she said suppression issues. So that's the other thing we are looking for. A virus can suppress the marrow from making the cells and that's what will eventually go away but an autoimmune disease can do that has well and that doesn't go away.

Wow. I can ramble and type fast on this iPhone! I can't remember the last time I had time to do anything on a real computer...

So the only reason I was posting this am was to say that while trying to occupy myself I went online and requested a FREE kit to join the bone marrow registry. I think everyone should do this. The kit is free and all you have to do is swab the inside of your cheek. You do it right at home and mail it in!! So simple and who knows, you could change a life and it requires very little from you. I PRAY HOPE AND EVERYTHING ELSE I CAN that we will never need such a thing but the sad truth is so many do and a lot of them are sweet little babies and children.

Here is a Q&A on joining:
http://marrow.org/Registry_Members/Donation/Donation_FAQs.aspx

Request a kit:
http://marrow.org/Join/Join_the_Registry.aspx

And here is all you have to do!

Home sweet home...

We are home! We ended up having to stay a little longer than expected. Mav developed a high fever and was bright red all over. So they decided to keep him on watch and also did another blood draw for cultures (we thought we were going to get lucky and have all the needles done while he was asleep! Almost made it...) they are checking it for a blood infection I think she said? Because his white cell count is so low he's more likely to get an infection or any illness... When it rains it pours. I hope it was just a side effect from the treatment or the gas they used to put him to sleep. so he's home but I'm sure I'll be checking his temp every hour tonight.
The doctor said some results will be back tmrw and some will take a week. I'm pretty sure I will drive myself crazy tmrw waiting for a phone call. I just need answers. Once I have them I can start to process whatever it may be. Big or small but I can't process the unknown. I can't cope with the unknown.
On a good note, we had an awesome night at home with all the babies. The big girls jumped on the moon bounce in the backyard while Mav played on his floor mat. Normally he's good there for 10 mins tops! I think he laid there talking and smacking toys for 30 mins. I think he was just so happy not to be bothered! At the kids request I made chocolate chip pancakes for dinner and we say and talked about everything they did today at their friends house. Mahala asked me twice what they did to Mav today and if he's better yet. I can see her mind just a ticking...she's so smart. She can smell my fear I think. I can't fool that one...

Thank you to everyone that called, emailed or texted us today. I promise I'm trying to get back to everyone. It means so much to us to see Mav so loved.

On a roll.

Maverick rolled over this morning for the first time. In a hospital bed. How unfair is that? I had just dressed him in his hospital gown and laid him on his belly to tie the back up when over he went! He was cheered on by nurses and anesthesiologists. He smiled of course and looked around like what did I do?? Then the nurse picked him up and took him down the hall to be weighed where I could hear many ohhs and ahhs and her saying this is maverick! Isn't he a cutie? Then the other nurse said, what's he in for and the nurse said bone marrow and then there was a group effort of Awwww. And poor babies which of course made me cry.
I was not prepared for the actual putting him to sleep part today. I was worried about the being asleep part but it didn't occur to me to think about what him getting there would be like. I think that really was a shock for Martin and I both. Watching them place that mask over his little mouth. He got a little fussy and was squeezing my finger so tight and in under a minute his big blue eyes started to drift and close and then he just let go of my finger. They let me give him a kiss and then walked us to the waiting room.
I think we were only in the waiting room for 20 mins before the doctor came out to get us. He told us everything went ok and they were cleaning him up. When we got to go in they were packing him up to move to another room in the pediatric sedation unit.
I remember the first time we had to come here. Oh my... It's pretty much the saddest place I've ever seen. I do think it's wonderful that there is an area that is fully devoted to children for treatments and testing like this but it's so hard to see any baby or child sick and here that's all it is. It's an area with around 20 curtain divided rooms and you can hear every cry and moan from every corner. Every parent has the same tired worried face and a tissue balled up in their hands. Last time I remember having a guilty feeling because our little boy looked to be the healthiest there but that was the same time that we found out the white cells were dropping as well and I worried if we were heading down the same path these parents are on. That's my worry again today. The paperwork they handed us said bone marrow aspiration to diagnose or treat leukemia or lymphoma. Both cancers. Now the doctors have all told us they seriously doubt that he has either because only two cell lines are affected and he just looks and acts so darn healthy so why do they then put that on paperwork?!? Someone please explain that to me?
They started Mav on his 3rd IVIG (Intravenous immunoglobulin) treatment about 2 hours ago. He spiked a fever an hour in and turned bright red so they have stopped it for a little while to let him cool down. He always gets a dose of Tylenol and benadryl before starting so he sleeps the entire time and now here we sit. Martin and I. Returning emails, researching words we find on paperwork we don't understand, playing words with friends, kissing Maverick's sweet little forehead. Whatever we can do to fade out the noise and make the time pass.

I thought I'd post on here once or twice but it really does feel good to have somewhere to vent and just let it all out.
Maybe I'll print this when it's all said and done and stuff it into Maverick's memory box. Someday When he's a healthy grown up he can read it and see that from the very start he lived up to his name...
Maverick : an independent individual who does not go along with a group or party. A wild or independent spirit.

4:40.

That's the time I woke up from a restless nights sleep to feed Mav. He isn't allowed to eat before they put him to sleep so I wanted to make sure I fed him as late as possible. That poor sweet boy. I'm changing his diaper and he's trying to focus his eyes to see what's going on, when finally he looked up at me with a look like what the heck lady?!? Don't you know how this works...I wake you. You don't wake me! After lots of trying I couldn't get him to really eat which I know will make for extra crying in a few hours:( so I tucked him into our bed while I got up to get a shower.

One of the hardest things about all this. Ha. Like there are only a few. Seriously. It's all hard. Every bit of it down right sucks. Lets just say that. Anyway...it's explaining or trying to explain what's going on to Mav's sisters. They don't get it of course and I don't really want to give them to much info or scare them. So right now all they know is that I've shuffled them off to yet another friends house while I spend their spring break at the hospital and in and out of doctors appts. I think Mahala knew there was no way we were taking any trips so last week all she asked (and made me pinky promise) that we would have a lunch and shopping day at the mall. I agreed and then she showed me the shoes and necklace she REALLY needs:) I wish I still had the simple needs of a 10 year old... I haven't worked in weeks so I managed to book a session for Monday evening and told her Tuesday was our day! Well it's Tuesday and we just pulled into fairfax hospital. I'm sure she understands some but that doesn't break my heart any less telling her we can't today.

Ok. Inside we go. I gotta pull myself together.

The last picture.

Let me start by saying that I have no idea where I'm going with this blog.  It could last one day or a week.  (Hopefully not that long because my little guy has to get better soon.  He just has too.)  I don't even know if it's just an outlet for me or if it's to update everyone else.  I don't know.  All I know is that my head hasn't stopped spinning and I'm not a talker.  I don't like to talk when sad or upset.  Maybe this will help.
I have been told by a few people to start a caring bridge page and I tried but I couldn't.  I couldn't decide if it was just for people with really sick family members or for every illness.  Either way...I'm not ready for that yet.
I can promise you though that pretty much every post will have spelling errors and punctuation typos because if I stop to really think and reread...I'll freeze and delete and just keep everything inside.

Of course with a photographer mommy this blogs first post would have something to do with pictures...!

This picture was the last taken before everything changed in our house.  

Maverick hates bottles and pacifiers.  So in my desperate attempt to get him to attach to something besides me I found this cape blanket on Etsy.  He loved it!  He grabs it, rubs it all over his face and throws it off smiling when he plays and when he is sleepy, he nurses it.  After watching him do this over and over his sisters and decided he looked like a super hero.  So "Mavy Man!" was born.  We put his cape on and all yell, "Mavvy Mannnn to the RESCUE!" and of course he smiles that big beautiful smile and we all laugh.  In the last 23 days (that have felt like years) he truly has become my super hero.  Every time the doctor gives me more crappy news and I burst into tears I hold him so tight and kiss him over and over and it never fails...he looks up at me and smiles and everything seems more manageable.  His smile is my hope and strength to get through each day.

This picture was taken on March 9th.  On March 10th I noticed a few little red dots on Mav's legs while changing his diaper.  I thought it's prob nothing and went on with our day.  The next morning there were like 40 of these little freckle looking dots.  They were on his legs, arms, chest...even in his ear!  I showed Martin and he said it looks like a reaction to clothes soap or something.  Mav seems happy, don't worry about it.  and he did.  Mav was his perfectly normal happy self but something was telling no. no no nooo.  This is not right.  An hour later I called the urgent care.  They made us an appt for that afternoon.  When we got there the doctor tried to tell me the same thing...it's eczema.  I said no...I really don't think it is.  I have 4 kids.  I know what that looks like.  This isn't it.  So he said well lets do a blood test but I don't think we will find anything.  It's rare.  Ok great.  Lets do that I say.  Down to the lab we go.  They did a foot prick.  Talk about horrible.  I was crying.  Mav is crying.  I had no idea that would be the easiest blood draw we would do...
10 mins.  We should have the results in 10 mins they said.  An hour later I'm still waiting and freaking out.  FINALLY the doctor walks back in and says...remember that rare case I mentioned?  He goes on the tell us that they did a CBC and that Maverick's platelet levels were very dangerously low.  The normal is 150,000-450,000.  His was a mere 3,000. Platelets are what makes your blood clot.  He said that the reason it was taking so long was because they were admitting him to Fairfax hospital and wanted us to drive right there and they were getting his room ready.
We got to the hospital and in the room around 9pm.  I think I met 20 people in the next hour and couldn't tell you one of their names.  It was a big ol blur.  We put the tiny gown on our baby boy and tucked him into his hospital crib and Martin and I laid down together in a chair that folded out to try and sleep.  That was a joke.
A nurse came in at 1:30am and said I'm taking him to the IV room, do you want to come.  Of course I did.  I wasn't leaving my baby.  I honestly don't remember much from there on out.  I remember crying and crying as I sat there listening to him scream in a dark room because they had to use a special light to find his tiny veins. He had his Mavy Man blanket though and it between cries I could hear him trying to pacify. I wanted to jump up, grab him and just run. Run anyway but there.  Next thing I know we are heading back to the room and his entire arm was taped up and covered and he had his sweet little face buried in my hair.  All I could hear was the quick breathing babies do when they can't catch any air from crying.
The next 5 days were a roller coaster of emotion.  Different doctors saying different things...the what it could be and the what it isn't but never what it IS. The hardest thing I've learned during this all is that medicine is very much a process of elimination. The unknown can drive a person crazy... Blood draw after blood draw.
We kept hearing about something called ITP or Idiopathic thrombocytopenic purpura and that if he's sick that is what we want! It's fixable and normally goes away but takes some time. There is no cure but a treatment until the body/immune system resets itself. Something called IVIG.
Fast forward two treatments later and his platelets have never gotten above 37,000 and now his white cell count keeps dropping below normal as well and that doesn't normally happen with ITP.
We had a visit at his specialist this morning and he didn't cry even a little with his foot prick. It's like it's normal to him now. That breaks my heart.

Today's results:
Platelets were 14,000
Neutrophil (part of the white cells that fight infection) count is 7% normal is 45%-70%
These numbers have earned us an early am ticket to a bone marrow test. They have to put him to sleep. I can't even put into words how much that scares me...