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!