44 days drug free.

I'm pretty sure I make it sound like my kid has a drug problem...poor thing.

It's been a month since I last blogged and ALOT has happened. Lets say no news was good news. :)

After his last drop to 29,000 we went into children's and they were easing me into the idea of maybe needing to do another IVIG if it had dropped more that week. I said ok and we did the blood draw. It was late in the afternoon so I didn't get the results before we left DC. Our new doctor is so amazing that when that happens she calls me at night as soon as she gets the results. It was 67,000!!!! We were all blown away!! The week after that...104,000!!! The week after that 112,000!
Talk about being on cloud nine. I can't express how happy we have been. I still treat him like a fragile egg and I'm starting to think I always will. I just know how quickly that number can dive and I'm still always remembering that in the back of my mind. I read yesterday that the body makes 30,000-50,000 new platelets everyday and of course the body can kill them even faster.
The increase in numbers has also made me a little spoiled I must admit. First of all the feeling in my stomach as I pull into the parking lot before a draw. Ugh. It's a feeling of nausea i'll never be able to fully explain. Then that feeling doubles after the blood draw until results. Anyway, it wasn't that long ago that I would hope and say a prayer in the parking lot that he would be at least 50,000. I would tell myself I'll be 100% happy if he just stays above 50,000. So now I'm spoiled. Today his platelets were 104,000 down from 112,000 and for a few minutes I was disappointed. I know... I'm crazy. I guess we are just so close to being "normal range" that I had my hopes up. He does have a nasty cold and fever though (the bonus of having 3 sisters in school=lots of germs). I'm sure that didn't help matters. See. I'm looking for reasons already. I've also already spent 45 mins researching if a cold cause cause platelets to drop.
I guess I just will always have this fear of it dropping. When he starts walking and falling or goes to preschool... Lord help me. I'm going to go insane. I'll be insisting he wear a helmet. Or a medical bracelet. Or hide in the bushes at recess. Yep. Poor kid is going to hate me...

(Photo of Mavy playing at Mommom and Aunt Shell's office)

6 months.

Yep. 6 months. Yesterday marked 6 months since maverick was admitted to the hospital and our life was changed completely and he's still sick. Well he never looks sick (never did!) but the blood work still says he is.
He's been off medication for 15 days now. Up until yesterday we were on a stable roll. The numbers weren't going up but they weren't going down really either. Then yesterday not only did his platelets drop to 29,000 his infection fighting cells dropped below normal for the first time in months. Punched in the gut...that's exactly what it feels like when I get the call with numbers like that. Then I spend the next days looking over tons of websites on the iPad and digging out all his test results for something we've missed. A clue. Answer. Something. Anything.

The doctors at children's thankfully still want to continue med free and see what happens. They just make sure to repeat the risk that comes with this..bleeding or brain hemorrhage if he falls or gets hit. Unlikely but a risk especially the closer he gets to 20,000. We agree but each week I get more nervous especially with him being on the move. He has the most adorable army crawl I've ever seen.
He still isn't pulling up on things are getting up on his knees. Normally I would be worried about this since he's just shy of 10 months (Mahala was walking at this point BUT she looked like bad fruit with all the bruises from not being very steady on her feet!) Him staying lower to the ground and not pulling up on things and falling are fine by me!
Now on the other hand, put that boy in his walker and there is no stopping him. He RUNS. At night there is a constant scream from one of the girls every few minutes because he is bumping them in the knees or running over their toes. He proudly throws everything on the fridge he can reach on the floor and laughs. He just found the wine rack and yesterday I found him rolling around the kitchen island with a bottle of Chardonnay on his snack tray.
He has 8 teeth and a new found love of string cheese, yogurt and now pasta.
Most exciting right now though, he has grown one inch since the move to every other day meds til now. One inch! He's back on the charts at 9% He has finally outgrown his 6 month clothes at almost 10 months! That's so crazy to me considering he starting wearing them at 4 months and was huge for his age. That tells you the halt that medicine put on his growth.

So. That's where we are. Finding the positives in a negative situation.

Everything you read on his condition has a different time span on a acute/chronic case of ITP. Most kids counts return to normal with 6 weeks. Most kids numbered don't ever fall as LOW as his did/do. Anything after 6 months is considered chronic. I found one site that says 80% of kids recover in 6-12 months. NIH actually. I can't tell you how many times a week I read that one paragraph. Somehow it makes me feel better. 3 months ago I thought for sure at the 6 month mark we would NOT be dealing with this but we are. Now 12 is my goal. By 12 months he WILL be better.

Goodbye prednisone!

Hello waiting game...

Yep. Today was a big day for us. We decided to take Mav off the steroids! I'm so excited and so nervous all at once.
It's been a big month. We made the doctor switch. Moved Mav to children's National in DC. I'm very happy about that. From day one they seemed to be much more on the same page as us and by that I mean, step one...OFF MEDS.
What have we done in the past month... A lot! We weaned the sweet boy down to a small amount of meds. Each week before heading into his CBC draws I would start to panic. My mind seriously can't focus on anything at all. My heart beats like crazy. Fearing that each drop would drop his number as well. He's managed to stay steady between 34,000-45,000.
We had two close calls with petechiae.
(petechiae is a small red or purple spot on the body, caused by a minor hemorrhage)
I say close call because the only time I've ever seen them really was when he was at 3,000 when all this started. So now we are learning that he can have some petechiae and not be super crazy staying in the hospital low.
We had his first eye exam that included dilating his pupils. This was to check for scarring behind the eye that could be a sign of a congenital virus. His eyes were perfect though!:)
We had an appointment with the infectious disease doctor at children's. All was well there too!
On top of all that...Mahala gave herself a very impressive black eye while working on cheer tumbling that has now formed a small hematoma above her eye. Then solana fell and ended up with 5 stitches and two loose front teeth!
During one week last month we were at 8 different doctors and two hospital by Thursday! That's just how we roll I guess.
Where are we now is what matters though. Today we are med free. Now we wait and see what his body does and they started to test for some other things today. They will likely do this each week to rule out things. (unless he makes a full recovery all the sudden, which I fully expect. No pressure Mav.) You can't take too much blood from a baby so it's a slow testing process. His white count has dropped some which scares me. I just pray and pray and pray that his body resets and this really is just ITP. A long case of ITP and not something bigger and this is just symptom one.
He is trying very hard to crawl right now. All the girls were already crawling at this age but I'm ok with him not. Less chance of bumping his head...ect. It's a total super cute army crawl. He can't get up on his knees yet (another side effect from the meds...bone issues). He loves his walker. It takes him an hour but he will get himself to the fridge and throw every magnet on the floor and then flash me the biggest smile.
He has lost a TON of swelling in his face and gained permanent stick marks in his heels.
I know it sounds like alot of insanity but it's our life. It's made us stronger and closer. I love watching all the kids play and bond. The girls become more protective of each other everyday.
I love that I have supportive friends, family and neighbors that help us with doctors visits. I love that I still manage to find time for work. It's my outlet. It helps me.

This video will give you a good dose of the "crazy" in the house. Never a dull (or silent) moment...

And this one...oh how I LOVE that laugh.

So close yet so far away.

Yep. That's us. We were soooo close I thought to being over this. For 3 weeks my little man held on strong. His platelets stayed around 50,000. I know that is far from the 150,000-450,000 normal range but at 50,000 we are out of the crazy scary bleeding zone. So 50,000 even with dropping his meds each week. I'll take it!! We were one drop from being off them and we dropped to 23,000 :( my heart sank so much hearing that number. Then having the doctor tell me I had to jack his meds waaaayyy back up again was even worse but I have two choices. First, say no and put an infant that is starting to move and crawl at risk for brain bleeding with even a minor head bump or pump him full of meds that are stopping him from growing and weakening his bones and immune system. Those are some SUPER crappy options.
We are one month away from him being considered chronic. I don't know why I'm so bothered by the word but I am. It haunts me. I know that even at a year this could finally just go away but then again being labeled chronic means that it couldn't. It could be worse...just gotta keep telling myself that.
So after his drop last week and the looming 6 month mark so close I decided it was time to do something else. I am SO SO blessed with my job and the people it brings into my life. Amazing people that care and want to help. A doctor client of mine got us in contact with another hematologist and we are having Maverick seen by someone at Childrens in DC next week. I'm so happy about this. I'm trying to prepare myself for the fact that they may not tell us anything different that we don't know but there is that small hope that they will. Maybe something someone missed. Another treatment option. Something. I'm so desperate for a different treatment.
After talking to an endocrinologist this week we confirmed that the reason maverick isn't growing is because of the current medicine. One doctor gave me the example of Gary Coleman and of course I completely lost it and became a blubbering mess. That is the extreme and he was on large doses his entire life and well actually that was a horrible example to tell a worried mother now that I think about it again. The steroids basically block the body from producing the growth hormone. So as long as he on this medicine he probably won't grow. So this week his current doctor moved his meds to every other day. This will atleast allow his body to produce some growth hormones which made me really angry because if that was an option why the HECK did we wait so long??? Yes. I can't wait for a new set of eyes to look my baby over.
(This one picture makes me smile so much. I have 3 blankie babies. Coco LOVES to hold Mav and the other day I found them both sitting so quietly nursing their blankets together. Love watching them grow and bond.)

It could be (a lot) worse.

That is what I keep telling myself. Every time I'm stressing about meds and numbers and the future. I stop. Breathe. Then tell myself...I could be ALOT worse.
I recently got a phone call from an amazing sweet couple that were clients of mine. He left me a message and when I returned it the first thing he did was ask how maverick was. I of course told him all the ins and outs and updates and then said but enough about that. What's up with you guys! I was thinking they were questioning a print or order ect from our last session. He got quiet for a second and said, "our baby died" every part of me froze and started to hurt. Tears flooded my eyes. I felt selfish for not hearing the pain in his voice that I clearly recognized in that second. After talking to him and hearing his story, I hung up and just sat in the wegmans parking lot for I don't even know how long watching people in and out with seemingly normal happy lives unable to get his voice out of my mind. I've never heard such pain behind a voice. All the sudden I got angry with myself. Everyday I worry about something with maverick or the girls and now they seemed so unimportant because at least they are HERE. So what if he can't play certain sports or has to lead a life a tad different from others...he's here. I get to hold him and hug him, all of them. It could be so much worse. I'm so guilty of dwelling on the negative things and putting the cart before the horse and I really have made a promise to myself to try and not do that. God won't give me more than I can handle. This I can handle.

To the M family...I don't know if you read this but your in my mind, my heart and my prayers EVERY day. I'm so deeply sorry for your loss. I'm here for anything you need.

Maverick had a good week. He is now an official sitter. Which will add some more grey hairs to my head making sure he doesn't roll and fall onto anything leading to a head bump but I can handle that!
He didn't grow in length again. So he's 1% now. He did gain 10 ozs though. That was awesome!
Last week his platelets were 135,000. We decided to cut out his night time dose altogether. That was about a 40% reduction of meds!! I was prepared for a drop this week in levels and it did. Down to 58,000. His specialist said he was comfortable with that though and we dropped another 25% of the meds!! We go back on July 5th. I'll be really happy with anything above 40,000. That's my wish but if it's lower...that will be ok too because no matter what his number is, He's here and he's happy and he adds so much joy to our family everyday.

I will not be swayed... (I hope)

Another many weeks in between posting.  I think that is a good thing though.  I find that I normally only want to post when I'm having a rotten day filled with worry.  It just makes me feel better to get it out.  Kind of like making a to do list...you can tackle it better when it's written down.  Ok...that was a horrible comparison.
We had an AMAZING time in Alaska.  I'm so thankful and blessed that we were able to do that trip.  It was very needed for us and the kids.  If only it had lasted longer.
AS soon as we returned I took Mav in for his routine weekly check which ended in a huge number drop and me blowing up on Mahala in the parking garage when she made the comment...."oh great!  This is how we get the spend our summer, hours and hours in doctor offices."  Then I felt even worse.  I try not to take them because it's an hour drive each way and 2 more hours in the office.  Somedays though, I don't have a choice, I have to take everyone.  I know she's 10.  It's hard.  It's so hard.  FOR EVERYONE.  They don't understand and they shouldn't have to!  Of course when she thought about it she came and gave me a huge hug saying sorry and so did I.  
I struggle so much everyday trying to make sure that everyone gets enough love and attention.  That the house is taken care of and then add running a company to that pile somewhere.  Something is bound to be missed somewhere and a break down by someone is always 5 minutes away.  Please tell me that is normal for every family?!
The hemo doctor is mentioning chronic ITP now,  which means he will most likely deal with this forever BUT then they also say that it could go away and be gone for years and years.  An acute infection can last 6 months.  It's been 3...so stop freaking me out by saying chronic!!  I know she's trying to keep me informed and prepared but I seriously can't handle it some days.  She also tried to be positive and tell me a story about a 17 year old boy she sees and how normal his life is.  That when he wants to play sports he just has to take the steroids to up his count and he is fine.  I can't picture Maverick being 17 and still having to deal with this :(
His growth is a big concern for me right now too.  I'm sure I'm reading into the side effects of the meds to much but he hasn't gained weight in a month and his height went from the high 60% to 3%.  I'm terrified the meds are stunting his growth.
I REALLY want to stop the meds and let his body have a chance to work.  I just want to see what it does...every time I fill those medicine droppers I get angry.  There is nobody to be angry at but it just gets to me.  Every time I rub his sweet swollen little face my heart drops just a little but more.  I just want him to have a normal life like a normal boy.  I want him to run around and fall without the fear of bleeding.  I want to not have that fear every time he will bump his head...I want him to play sports or not play sports.  I don't care but I want it to be his choice not because he medically can't.
I KNOW...I'm thinking sooooo far in advance and I know I shouldn't.  Somedays, I just can't help it.
So anyway, that is what I want to tell the doctor this week.  I want to stop the meds as soon as we can wean him down enough and give his body a chance to work.  I know they are going to be worried about not treating but I think it's time to see what happens.

Still watching cars...

2 months 6 days. That's how long Mavs been treated like a porcelain doll. Things have been much better though and weekly trips to the specialist and filling syringes have become part of our normal routine. We have worked out the kinks!
After weeks and testing 3 different routes..I've found one that gets us here in 50 mins verses an hour and 20. Instead of filling one medicine dropper and fighting Mav not to spit it out...I fill 4 smaller ones instead and we are both much happier. The steroid puffiness though, I haven't found a cure for that. My poor little man has the biggest cheeks! Of course when we are out and people say..."oh look at those cheeks!!! Somebody is eating well!" they don't know the truth. I wanna say actually that's the damn steroids I'm forced to give him twice a day and he doesn't eat well. He's losing weight!" but I don't. I just smile...and say thank you.
His numbers have been all over the last two weeks. We went from 229,000 then 15,000, 24,000, 115,000 and today he was 86,000. I feel myself starting the panic again...maybe it isn't what they think it is. Maybe he has something else. Maybe this will never go away. The doctors do a great job keeping me calm though and everything I have read says that it can take 6 months to beat an antibody and still be considered an acute infection. So I just have to believe that.
Maverick does get so excited though to watch his cars every week. He is just so amused by them. It has to be a boy thing:) and the staff just loves him. Up and down the halls...oh maverick is here! He never disappoints either, always flashing a big smile!
My only pet peeve with the office is that all the rooms face a day care/preschool across the street. Maverick is too small to care of course but it breaks my heart seeing a 5 year old boy getting chemo facing a playground with kids running all over the place :(
Here's what Mav does each week. Pics from last week and today. He just loves watching those cars!

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...