The Watts' Adventures

My baby has been thru it in the last 30 to 60 days...

Here is his recap:
January 1st: we are half way thru his first middle school year. Thank Goodness!

January 14th: Michael finds Paddington in the woods not breathing and with attach wounds! Still a very vivid sound of his scream and a vivid picture of the look on his face when I ran towards him. He still has nightmares about it.

January 21st: Michael starts conditioning for the Middle school baseball team.

January 23rd: He presents to my office and we by chance run a CBC on him. His platelets are 49K. Dr. Schacht is called immediatly and more tests are run.

January 24th: Pretty convienced he has ITP. Consult to Duke with a Pediatric Hem/Onc

January 26th: We go get Stormy, Michael is sooo happy and gotten his mind off of all the other stuff.

January 31st: First appointment at Duke. More blood, still don't know a lot other than no PE, baseball, 4 wheelers etc. Michael is not a happy camper but willing to give them 2 weeks.

February 3rd: Dutchess passes away. Now the world is going to end, so we think! how much more can my little man take?

February 9th: He spends the night with a friend and leaves his worries at home!

February 10th: He gets sick with cold/flu

February 11th: We go to the pediatrician (not the one we usually see and love).. that was a joke and a whole nother story. He's out of school due to sickness

February 12th: out of school due to still running a fever

February 13th: He goes to school and thinks his English teacher has written him up a yellow slip for "exclaiming damn" in class. But she didn't have the nerve to give it to him that day. (Oh that is a story I'll have to share later in my blog. You all will get a big laugh out of it. David and I did.)

February 14th: We get snow. We go to Duke and his platelets have dropped even lower due to his recent "virus". He receives a shot of WinRho and all is well. We wait.... He is in good spirits!

February 14th pm: We head to the local ER, he has a reaction! He's ok but completely wiped out!

February 15th: another day at home due to the reaction causing fatigue! Thank goodness for Mom & Dad being here!

February 16th & 17th: He crashed for the weekend. I'm not even sure he came out of his PJ's.

February 18th am: He had 321K platelets! He was one happy little boy. Can I play in PE today was the first question. The answer "no", not yet. That really hit hard because on this day was the try-outs for the Middle school baseball team. It was something he had wanted to do since Middle school started. His eyes showed the dissappointment and my heart hurt for him.

February 18th pm: Michael comes home with a BS(bullshit) yellow slip! I flew hot and called the school and talked to an administrator for the 6th grade due to the fact that the teacher was out sick. Lucky for her! I'll save the story.. LOL.... As if my guy needed that crap with everything else. *%*&%^*(#$&*&*

February 25th: More labs.. our counts were 197K.. my guy aint' happy and is down in the dumps and his gut and my gut are feeling the same....

And my little Michael is Only(((((((( 11 )))))))))))
It saddens my heart that he knows so much at his age. We have been honest and open with him. He will be the one to make the choices. It is his body. David, myself & his doctors can only guide him. Studies show that with his numbers, he can get treatment or not get treatment. We will all ultimatly make the decision as a family but his opinion and thoughts will be the most influential. Until next Monday..... keep praying..

These days we can't decided if we want Mondays to hurry up and get here or if we want to just skip them. Unfortunatly, they come and we wait anxiously with everyone else for the blood counts of the day. Michael skipped on into my office on Monday with anticipation of his counts. His personal nurse, Susan, drew up his blood. Unfortunatly the machine had not warmed up so I had to scoot him to school without him knowing his count. Thanks to wonderful technology he is only an email away! His homeroom teacher and good friend of ours always gives him the news. Luckily its been good so far. His counts Monday were 197K. Yes they are down but they are above 100K and that right now is the magic number. I was a little frazzled about it and already had the gut feeling that they would be down, but kept the faith! So our great(she really is and Michael loves her) PA, Jennifer from Duke called and said, they dropped, duh! Let's still keep him restricted on activities and check them next week and go from there. His TSH (thyroid function test) came back good so we have ruled that out. His antiboties test came back negative so that is good! That means that his antiboties aren't attacking his platelets. So, his spleen just seems to be eating his platelets, guess it's just hungry! Jane, is that a good way to explain it? There is no other explanation and yes I'm ok with that. So, we wait til next Monday and from there we make a plan.....

Well, Hunter has decided to play hide and go seek during the night. His usual routine consists of getting up in the middle of the night, coming to our bathroom and peeing and then climbing in our bed. Sometimes I hear him sometimes I don't. Sometimes he crawls over me sometimes he slides in without us ever knowing until we wake up in the morning. Sometimes we find him on the sofa in the living room, in his brothers room and most recently (this morning) David found him in the basement fast asleep on one of the sofa's. Is this bizarr or what? Guess nothing could be too far fetched for the Watts' household. Anything goes these days and we never know from one day or minute to the next what might happen. Hunter remembers nothing about his night adventures! The worst is that David got him up and put him in our bed and he still doesn't remember. What else could he be doing when we are asleep and better yet what in the heck are we going to do???? Any suggestions are welcome!

Just thought I'd drop in and write a few thoughts so that you all would really see that I'm trying to keep this updated.

This week has been much calmer than the last few. Michael is in good spirits and seems to have more energy. He is very discouraged at not being able to try out for the school baseball team. Cuts have started this week and he checks the list every day and compares his self to see where he would have or could have ended up. We are trying to keep him positive and focused on the upcoming Dixie Youth season and Fall travel ball. It's still hard for him and me too! I love baseball and more so love to watch my boys play it. We let Michael practice with his Dixie youth team lastnight. Yeah, I know... not what the doctor ordered but he was limited. He could only play out field, practice pitching (not to a batter) and bat. Trust me, there was alot more that he wanted to do. We are trying so hard to keep his activities as "normal" as possible. Michael is doing great academically. He could be making straight A's but settles for A's and B's. All A's is considered nerdy to him...... Trust me, I've tried and nothing works.....

Hunter is Hunter... He is doing so good in school, mastering his multiplication tables and is self teaching himself via the internet how to type! Simply amazing! He has made the honor roll all year and seems to be enjoying his new school. I hope he continues to have great teachers like he has had this year! They have made a major impact on him. He is handling his brothers "sickness" as good as any 8 year old could. He knows all about it and is mainly concerned with his brother being all right! He is granddaddy's side kick and enjoys hanging out with him. They do alot of school work together and I think they keep each other on track!

David and I just live one day at a time ready for whatever pops up. Nothing is a surprise anymore and we just take it as it comes. David is working alot and has been on 12 hour night shift this week. Job security! The OT has come just in time with all the medical bills we have coming in the mailbox! Shewwwwww.....Oh and with our lovely check from the government it will not go to buy something like they want us too, it will just simply go to DUMC! LOL We will make it and remind ourselves everyday that Michael's conditions could be sooooooo much worse. We are thankful!

Ok... I finally did it.... 8 months in 2 hours...

Please read from bottom to top or you will be so confused you won't have a clue as to what is going on. Don't say I didn't warn you...

Things I now realize that I forgot:

Hunter's 8th Birthday--- Sept 27th.. he had a sleep over with all his friends.
David's 39th and holding birthday Dec 6th...
My 35th birthday and holding Jan. 17th.

It has been a trying and difficult month of January and into Feburary. We have had tragidies, celebrations, emotional moments but without our friends and family we could not have gotten thru it. So, here is a shout out to you all and you know who you are! A big Thank you !

Enjoy!

Today like most Monday's from here on out consist of blood draws. That will be our Monday morning routine prior to going to school. Today his platelets were 321K!!!!!!!!!!!! That is awesome for him but expected. We are trying not to get too over joyed. It has to be that high next Monday and the next and the next and so on. And you ask... if it goes back down? We have another treatment option of weekly IV infusions at Duke. I think if it means playing baseball or not, then we will probably go for it. The decision will be Michaels. You ask, if that doesn't work, we live with it or take his spleen out. We don't have to make that decision yet so we haven't. We are simply taking one day at a time educating ourselves and those around us, doing alot of praying and keeping our faith. There is a reason for this and one day we will know!

Commonly asked questions: Let me see if I can hit all of these.

What causes ITP? No known cause, in his case. It just is.
What is ITP? Idiopathic Thrombocytopenia Pupura
(low platelets) (bruising, rash)
It's an auto immune disorder.... if you look it up on the web make sure you look under pediatric

Why can't he participate in sports, PE etc? There is a 1% chance that he could have a brain bleed if hit. Platelet counts can change from day to day so we never know how low they could go, so we can't take any chances.

How did you find all this out? A mother's instinct and the knowledge of the field as to what to look for etc. Simply a gut feeling! I have always disliked the "blood" side of my job but have certainly gotten to know it alot better in the past few weeks.

Michael's explanation of ITP: a virus is on my platelets and my spleen is eating everything instead of just the virus!

So, there is is.... If you have any questions or concerns please call us. We don't mind. When you say your prayers at night, squeeze us in, because the power of prayer is better than any pharmacutical healing that I know!

Well, our trip from Durham went down hill the closer we got home. Michael spiked a fever, had a funky feeling stomach, headache and couldn't hardly hold his eyes open. He ran in the house and delivered his milk shake to the toilet along with whatever else he had bubbling around. I didn't even take my coat off. I just simply picked up the phone dialed the number to Duke, while shoving a thermometer in his mouth. I spoke with the fellow on call which instructed us to go to our local ER.. Oh joy.. I didn't do anything but call Dr. Schacht to meet us. Gotta love the perks that come with the job.

We went to the ER and had his blood drawn. Dr. Schacht wanted to make sure his Hgb & Hct hadn't bottomed out. All was well and we were on our way home in a little more than 2 hours. That's a record!! yahoo! Michael slept good that night. He had been thru it and so had we. He stayed out of school on Friday with Dad (my dad) to make sure his symptoms didn't come back. Friday was a day of pins and needless making sure my baby was alright and he was. By mid day his color was back and he was in better spirits. Still a little fatigued but all in all, he was OK.

Valentine's Day came and so did the snow, no school and Michael's follow up Duke appointment.

David came with us this time. Decisions needed to be made and I needed him.
Needless to say, I had already done my homework. I knew there were 3 types of treatment for Michael's condition. 1. steroids 2. WinRho injection 3. IVIG (4 hour weekly infusions x 4 weeks) I read about all of them. They all seemed to be evil but the less of the 3 evils seemed to be the Winrho injections. I had asked Dr. Schacht as a physician what he recommended and he said WinRho. I asked Dr. Randhawa as a father and he said WinRho. So WinRho was our plan. We got to the appointment and it was confirmed: Michael has ITP. It is actually rare in his case. Usually you see kids younger or older with it, but not at his age. Dr. Rosoffe explained everything in detail where David & Michael could understand it. More labs were drawn and then he got the WinRho injection. We hung around for 30 mins to make sure he wasn't going to have an allergic reaction. The side affects were explained and we were given numbers to call if he had any. Things were looking great. Michael looked good, felt good and we had a positive outlook..... We are going to play baseball!

Michael and I headed to Duke to see Dr. Rosoffe. Needless to say more blood was drawn. His platelets were 51K that day. We still didn't know a whole lot other than we thought he had ITP, Idiopathic Thrombocytopenia Pupura. Dr. Rosoffe wouldn't tell us alot until he got all of his blood work back and could make a definant diagnosis. Malignancy at this point had been completely ruled out. Dr. Schacht did that right off the bat. So we head back to Duke in 2 weeks, Valentines Day. It hit me hard when Michael was told, no PE, no baseball, no football, no 4 wheelers, no knives & no guns. I think that is when reality set in. I was speechless, emotional and trying so hard to hold it together for Michael. I didn't want to scare him. It was the hardest thing I have ever had to do. I knew in my heart it could be so much worse and he was a lucky kid. But to explain to him that he was "sick" even though he didn't look it or feel it was hard to understand and explain. The doctor at Duke did an awesome job at explaining all of this to Michael in kid form!

So his life is on hold until.....................

The next day finally came. Michael's labs all came back ok. Dr. Schacht & Dr. Randhawa jumped on him with both feet. God bless them! Dr. Schacht phone consulted a Pediatric Hematologist-Oncologist. He inturn called me and I told him all I knew. We were headed to Duke the following Thursday 1/31/2008. What a long week.

Well for most of my readers you already know all this but I want to document it in it's fullest.

I had been noticing some bruising on Michael for a quite awhile but they all seemed to be explained with him playing baseball, football and everyday boy roughness. On one particular day he was laying on the sofa and his legs were black and blue with no explanation. The pictures really don't show it. I took pictures of them and let my doctors see it. Michael came by the office one day after baseball conditioning and we (me, nurses & Nurse Practitioner) decided to run a CBC on him at 4:50pm. It was one of those, lets check and see, just because we can. I was working at my desk waiting for the results and waiting and waiting.. I continued to hear the machine running several times and then I decided to get up and see what was going on. As I turned the corner I met 2 nurses and our NP, white as ghosts with a look of worry on their faces. I knew it wasn't good. Michael's platelets were 49thousand (49K). Normal is 150K-500K. We immediatly got his last CBC from 6-07 and they were 80K. I was unaware of that. Another story in itself and I'm not going there. The girls got on the phone and the world was spinning. Dr. Schacht was called and got right to work on him. He ordered additional labs and we wouldn't have the results until the following morning. The girls warned us to lay low until we find out what was going on. I knew we were in good hands!

This year was the best Christmas ever! Everyone was home! Mom & Dad were here for the first time in years without having to leave to beat traffic or get to the airport not to miss a plane. Everyone was home! We had our Parrett Christmas the weekend before and Chad & his family joined us for a traditional Christmas dinner and present opening. It was so much fun seeing the kids open all of their presents. It was truely a Christmas to be thankful for. No one was sick, everyone was healthy and we were all together!