House of Estrogen

Simple Woman's Daybook, August 31, 2009

For Today...

Outside my window... waves crashing against the shore, ocean winds blowing, and the smell of the salty air. In a word...perfection!

I am thinking... that despite this being the most hastily packed beach trip EVER, we somehow didn't forget too much. The biggest disappointment was that I forgot to pack the dress for Nina's Nina Drive photo . She has worn the same dress in a different color each year since 2004. Bummer.

I am thankful for... Elise's platelet count being normal Thursday before we left for our trip, although her nosebleed last night made me a bit anxious.

From the kitchen... Pioneer Woman's Lasagna. This is my first time making it, and I can't wait to try it. Technically, it is Pioneer Woman's Lasagna minus two small cans of tomato paste. I realized I was missing the tomato paste as I was assembling it late last night. I wasn't about to run out to the grocery store at ten o'clock just for tomato paste, so hopefully I haven't ruined it with my one lacking ingredient.

I am wearing... pajamas.

I am creating... lots of fun beach memories and hopefully some good photographs capturing those memories.

I am going... to the aquarium today, I think.

I am reading... My Sister's Keeper by Jodi Picoult... great book so far. 

I am hoping... that we have beautiful weather this week.

I am hearing... the sweet sound of ocean waves.

Around the house... sand!

One of my favorite things... this beach house! We usually try out a different beach house every year, but we definitely plan on returning to this one. It is a great size for our family, has a fabulous layout, a hammock, and a pool!

A few plans for the rest of the week.... lie on the beach, play in the waves with my kids, swim, take naps, build sand castles, eat seafood, read on the deck listening to the waves, sleep... repeat.

Here is a picture thought I am sharing... Nina and Addison checking out the boats in the sound after dinner last night.

          

 To read more Daybook posts or learn how to participate, visit The Simple Woman's Daybook. 

Side note: Peggy of Simple Woman's Daybook is taking the summer off, so summer daybook posts are being linked here.

Doing the Happy Platelet Dance

Elise's platelet count was 173,000 today... way up there in the normal range! She can clot with the best of us now!

Too Close for Comfort

J.C. was out in the woods today working on a jump at a local mountain biking trail. He had been fastening some screws into the base of the jump just a couple inches off the ground, finished, stood up, and was about to take a step when he saw this about an inch from his feet.

After jumping back fast and wailing like a moose on crack, he snapped that picture. For any of you not up on your snake identification, that's a venomous copperhead. His hands had been just inches from it. How's that for a nightmare inducing thought?

Big Day for Nina

Nina has been walking around for a week with her first loose tooth practically hanging out of her mouth. She could make it dance with her tongue, and every day, we've been disgusted amazed that it was still holding on. Finally, J.C. couldn't stand it any longer, so he went at it with the pliers today and yanked it out. She is thrilled... that first tooth is a big milestone. Of course, she's totally psyched about the tooth fairy making her appearance tonight. Sadly, the tooth fairy doesn't have a good track record at our house. I don't even want to think about the tears we'll face tomorrow morning if the tooth fairy screws up the first tooth, so if you happen to know the tooth fairy's email address, feel free to drop her an email about nine or ten o'clock tonight to remind her about Nina's tooth! 

  

Simple Woman's Daybook, August 24, 2009

For Today...

Outside my window... our yard is beginning to look slightly more presentable! The landscaper came yesterday and did some pruning and weeding.

I am thinking... about Elise's friend in her Brownie troop who is having spinal surgery tomorrow. My thoughts and prayers are with her family for a safe surgery.

I am thankful for... Elise's platelet count coming up so much without treatment! The IVIG was SO hard on her last time. We were all really anxious about going through that again.

From the kitchen... flank steak sandwich for lunch using the leftover flank steak I grilled last night - yum! No plans for dinner yet.

I am wearing... a Sanitary Fish Market tee shirt, denim shorts, and flip flops.

I am creating... clean, folded, hung-up, put away laundry.

I am going... to buy yet another point and shoot camera. Maybe the third time's the charm?

I am reading... StrengthsFinder 2.0 by Tom Rath, required reading for work. I gave up on The Sweetness at the Bottom of the Pie by Alan Bradley.

I am hoping... that Elise's platelet count stays stable for a while.

I am hearing... the dishwasher running... gotta love a husband who does the dishes before he leaves for work!

Around the house... paper - construction paper, junk mail, important papers, unimportant papers, school papers. I need a system for paper!

One of my favorite things... normal platelet counts!

A few plans for the rest of the week.... I read my list from last week, and almost everything on it was either rained out or cancelled because Elise was in the hospital. Let's hope this week goes on as scheduled. That said, this week doesn't have much planned. Nina has an eye doctor appointment (the annual "Is this the appointment where they will say she needs glasses?" since she is borderline every time), and Elise and Nina have tumbling and soccer the same night at overlapping times. That should be interesting.

Here is a picture thought I am sharing... Grandmamma getting a kiss from Addie at her 65th 39th surprise birthday party!

         

 To read more Daybook posts or learn how to participate, visit The Simple Woman's Daybook. 

Side note: Peggy of Simple Woman's Daybook is taking the summer off, so summer daybook posts are being linked here.

Sweet, Sweet Platelets!

91,000!  Still not up to the normal range (150-400K), but it is a huge leap from the 35,000 count Elise had just two days ago. We don't know exactly what is causing the yo-yo count, but at this point, we're just thankful for the higher number. Now she can safely participate in most activities she would like to do without fear of bleeding and bruising issues.

We can already tell that dealing with ITP is going to be an ongoing roller coaster ride as long as it lasts. We're probably dealing with some type of chronic ITP, and we'll just have to ride the ride and see where it takes us for a while. There are several treatments available for when her counts dip below 10,000, and some of the tests run today will help the doctors determine which ones will work for her.

For now, we're going to enjoy the nearly 100K count, get her platelets checked weekly, and continue keeping a watchful eye out for bruises, nosebleeds, and gums bleeding.

Thanks so much for all the notes, emails, calls, and well wishes. Her body seems to be pulling the platelets back up on its own this time, and time will tell where we go from here.

A Little Update

Regardless of why your child is being treated or what the issue is, I have to say it really sucks to go to the university cancer hospital, to the pediatric oncology clinic, and walk through the chemo infusion area. Really. Sucks. I know I should be thankful it isn't my child sitting in one of those chairs, but it has still been a hard, emotionally draining day regardless.

We're still here, waiting for the numbing cream to numb her arm, so she can get her blood drawn.

Everyone has been really nice, and the specialist we saw was great.

Assuming her blood counts are no worse than the past couple of days, they are sending us home to "watch and wait". She'll get her blood drawn once a week to see if we can establish a pattern and figure out what direction her counts are going.

They are taking additional blood to rule out auto-immune disorders, but they still feel pretty confident we're dealing with ITP. The doc said that he doesn't generally treat until a child gets down closer to 10,000.

He said no trampolines, no contact sports, no ice skating, etc. when her counts are low. As for things like swimming and jungle gyms, he was hesitant and said she could do them calmly when well supervised. This will definitely be an adjustment.

A bone marrow aspiration may be in her future because the information gleaned from that could help determine the best treatments to use when her counts are really low, but we're holding off on that for right now, pending a few weekly blood draws. 

So, that's where we are... likely going home to figure out how to lead a normal life with low (but not dangerously low) platelets. Obviously, if the results from this blood draw are much lower than we're anticipating, we'll have a change of course and go forward with treatment. We're not expecting that though.

Is this all good news? bad news? Dunno. Still absorbing it all. It is what it is.

A Few Questions Answered

I've had a few questions since yesterday, so I thought I'd try to answer them.

1) If Elise's ITP is chronic, what does that mean? What sort of treatment will she need?

We really don't know yet. I know some of the treatment options for chronic ITP are IVIG, WinRho (another blood product), steroids, Vincristine (a chemotherapy drug), and splenectomy, among others. Some doctors also take a watch-and-wait approach to see if the body will go back to a normal platelet count without treatment.

2) How does she feel?

Fine. It isn't like anemia where she would feel weak or sick. She feels perfectly fine, so she has NOT been happy about missing camp this week. If she has to get IVIG treatment again, that is when she will start feeling bad.

3) How did you know the ITP was back?

She came home from camp Tuesday with a big, honkin' bright purple bruise on her knee. It was a really brutal looking bruise that should have accompanied some terrible injury. When we asked her about it, she said that she slipped and fell on a hike but got up and kept going. She said she didn't cry, and it didn't hurt too much. The description of the injury clearly didn't match the bleeding of the bruise. She also had a few small bruises on her elbows that weren't suspicious on their own, but when coupled with the knee bruise, they didn't look totally normal. When we looked her over, she also had a little bit of petechiae on her back near a small bruise. None of it would have sent us to the pediatrician if it weren't for our hypersensitivity to bruises ever since her first bout with ITP.

4) Could it be leukemia? (OK, so nobody has actually asked that one specifically to my face, but I know it is floating around out there, so I thought I'd address it directly.)

All indications point to no. Her red blood cell and white blood cell counts have been normal with every blood draw. The doctors do still feel we are dealing with ITP. They are just puzzled by the presentation, so they would like her examined more fully and treated by a specialist.

5) Why did they send you home? Shouldn't she be in the hospital with that low of a platelet count?

The real "danger zone" for a low platelets is a count under 10,000. That's when you have a serious risk of cerebral hemorrhaging. At 30,000-50,000 where she is, she has been given instructions to avoid any sport or activity where she might get injured, but she's not in any serious danger just hanging out here at home with us. Bored, yes. Bleeding internally, no. She will definitely deal with bruises and nosebleeds at this platelet count, but as long as she isn't doing anything too crazy, we don't need to worry too much (or so we've been told. We still worry though).

6) Will she be admitted for treatment tomorrow?

We don't know. If the doctor wants us to do a watch-and-wait to see how her counts move, then we may just come home. We are certainly preparing for an overnight stay with treatment, but we don't know anything for sure yet.

Change of Plans

After spending all day in the hospital, Elise is being discharged. The doctor here would like her to be seen by a hematologist at the big university hospital. Elise is having mixed feelings. She is excited about the wheelchair ride out to the car but bummed about not sleeping in the cool adjustable hospital bed. Oh, to have the view of the world of a seven year old! I'm having mixed feelings too but obviously on a different scale. It feels great to be going home and not facing a night of IVIG treatment and its nasty side effects, but it also feels like we're just delaying the inevitable. The decision to send us to a hematologist is rooted in the feeling that her ITP is not presenting in a typical way. It has not been a one-time acute event nor has she continued to have an ongoing low platelet count as would be expected for chronic ITP. In a word, they are stumped. Where is Dr. House when you need him?  I'm trying not to worry too much, but I'm not making great progress with that.

They are working on her discharge papers now, so I'm sure that means we'll be here another three hours. Gotta love hospital efficiency.

Déja Vu

This all feels like déja vu, and I'm not liking that one bit. I'm sitting here in a hospital room once again, just like I was five months ago with Elise in the bed next to me with a platelet count of about 30,000 (normal is 150,000-400,000). Her ITP is back, so back in the hospital we are for more IVIG. Elise is in good spirits. She went by the playroom and picked out a movie, two craft kits, and a bunch of coloring stuff, so she is happily entertaining herself. I've decided she must have NO memory of how horrific the side effects of the IVIG were last time. If she did, she most certainly would not be so chipper. She remembers oddball things like how the nurse told her that boys tend to cry more than girls when getting IV's. She remembers eating in the cafeteria one day when Nina was visiting. She remembers that IV's are much less painful when numbing cream has been applied first. I truly think she does not have any memory of the excruciating headache that had her writhing in pain, or the vomiting that wouldn't stop, or the CT scan to see if she had bleeding in the brain. Unfortunately, those are all the parts etched in my memory.  I guess that's the beauty of the human mind.. the ability to block out those memories. I'm glad her brain has worked to protect her. I could use a little of that myself though.

Anyway, here we are. She has the numbing cream on her arm and is waiting for an IV. We've seen numerous nurses and nurse practitioners but no doctor yet.

The big question at hand is whether this episode is just a recurrence or continuation of her prior ITP or whether this is now the indication that she has the chronic version of the disease that will need ongoing management and medication. Right now, we don't have an answer to that.