House of Estrogen

The High Highs and the Low Lows

J.C. had his first physical therapy appointment yesterday. It went well, and the P.T. unlocked his brace about 50 degrees which allowed J.C. to fit in his car! Today was the first time in nearly a month that he has been able to drive, and it felt like a Christmas miracle. We both felt so liberated. He was able to leave work to meet the school bus without my having to drive him there! Maybe our luck was turning.

Then my mom called. My uncle passed away this morning. He fought a fierce but short battle against lung cancer. I miss him already. I know not everyone has a close relationship with their aunts and uncles, but I do with several of mine. Uncle John lived near my parents and would pick me up from the airport if they were busy, help out my parents with anything they needed, and always fit me in his schedule for a good Mexican dinner any time I was in town. Now he's gone, and besides all of us losing a really wonderful family member, the Dallas Zoo is losing a truly outstanding volunteer and Zoo advocate.

It has been a hard day riding this roller coaster of life. The news about my uncle was certainly a reality check that J.C.'s injury really isn't all that bad in the big picture of life, but it was also another hard pill to swallow in what has been a tough month emotionally.

J.C.'s new found driving privilege couldn't have come at a better time. Now I can hop on a plane this weekend for a quick trip to Dallas and feel reasonably confident that he can muddle through a few days alone with the kids. As long as he doesn't have to chase Addie anywhere, I think he'll do OK. I'm pretty sure she would beat him in any race.

Is it 2010 yet? I'm just about ready for 2009 to be over.

Another Week of This

This is J.C.'s standard look for the past two weeks. We were hoping for news today on how to move forward, either with surgery or rehab, but instead he was just prescribed another week of locked brace, elevated leg, couch potatoism. He declared yesterday that he had surfed the entire Internet, so I'm not sure how he'll pass his time this week. I think by now he's surely seen every episode of Top Gear and Survivorman as well. He may have to move on to Oprah and Days of our Lives.

We did get more information though. Besides the torn MCL (medial collateral ligament) that should keep his knee moving in just two directions rather than three, he also has a torn PCL (posterier cruciate ligament). The PCL is what keeps your lower leg from not dropping back behind your knee.

The MCL should reattach on its own. The PCL is likely to reattach as well. If a PCL does not reattach well enough, it can be reattached surgically. As the doctor put it though, the surgery is not a "slam dunk" like it is for an ACL tear. Surgery on the PCL is technically challenging and often does not yield a perfect reconstruction, so in most cases, the results from the body's own healing (even if imperfect) equals that of a surgeon's.

The doctor wanted another week of the immobilized joint to get him from a multi-ligament injury to a single-ligament injury before evaluating how bad the PCL tear is. Hopefully by next week, his MCL will be fully reattached, and we will find out how to move forward in dealing with the torn PCL.

So for now, we'll keep trucking along with the status quo. It may look relaxing on his end, but it isn't nearly that peaceful in my world.

Sink or Swim?

Sorry for the lack of blogging lately, but right now I'm teetering between a desperate dog paddle to the side of the pool and lying at the bottom of the deep end with the weight of my world chained to my ankle. I thought my load was heavy before Monday. Then J.C. crashed, and the load just got exponentially heavier. The trashcan in the kitchen that used to empty itself every couple of days now overflows until I figure out I have to be the one to take out the trash. The kids who used to have a ride to track-out camp now depend on me for every ride every day everywhere they need to go.  The diaper pail that used to get dumped when the stench was overwhelming now stinks up the house until I find the time to take it out. The baby who cries during the night now has only me to comfort her. The dishes piling up in the sink don't get washed any more. I think I need to buy paper plates. I know we'll get through this, and I'm hoping J.C. will get upgraded to a brace with some range of motion in the next few weeks, but for now, things are hard. Most days, I feel like I'm drowning, but I'm clinging to a few floatation devices to keep me afloat...

1. Stronger, by Kanye West. Yes, I know he's an ass. I probably shouldn't support his music career, but I bought that song before he was such a jerk to Taylor Swift, so I don't feel too guilty listening to it. Repeating, "N-n-n-now that that don't kill me can only make me stronger" over and over to myself is a good mantra right now.
2. Starbuck's gingerbread - slices of heaven, that stuff. If I gain 50 pounds while J.C. is crutch-bound, you'll know why.
3. Addie's hugs.
4. The gorgeous Carolina blue skies that come out between the rainy days. There are also a few remaining trees with bright red leaves hanging on for me. Once the leaves are all gone though, I am done with fall and winter. Bring on spring, please.
5. Candy Cane Joe Joes - my other seasonal love. Trader Joe's and Starbuck's know how to nail seasonal comfort food. Part of the above mentioned 50 pounds can also be attributed to Candy Cane Joe Joes.
6. Friends and neighbors who have carted my kids around and brought us meals.
7. Hot baths at the end of a long day. If the baby cries while I'm in the tub, she just has to wait.
8. I Gotta Feeling, by the Black Eyed Peas because how can you not smile when you're singing that song? I haven't been smiling much lately, but that one still works on me.
9. McDonald's and Wendy's, while horribly unhealthy for my kids, I figure an overdose of fast food for a couple of weeks is better than their mother having a mental breakdown over trying to prepare a well balanced meal and clean up after it.
10. J.C. trying desperately to help out when he can. There's only so much he can accomplish from his perch on the couch, but he tries hard.

I bow down to all the single parents out there. Thankfully, I am not one, but I'm getting a taste of it with this injury. It is HARD WORK. I have an enormous amount of respect for moms and dads parenting solo. I'll be glad when my partner in parenting is back on his feet. For now, I'll just keep on treading water.

Not a Fun Afternoon

You know how your knee is only supposed to move forward and backward? Well, apparently, when your knee can move in three directions, and when the lower part of your leg stays put when you raise the upper part of your leg, there is much pain involved. I learned all this today after getting the call from JC that he was in the ER after a mountain biking crash. Not only was he in the ER, but he had arrived by ambulance. As if our lives weren't busy enough already, he decided to spice things up a bit.

The poor guy doesn't even have a good story to go along with this injury though! That's the pitiful part. He comes home from downhill biking trips to Snowshoe, WV, with barely a scrape or scratch. Yet, today, the asphalt greenway kicked his ass. His wheel spun out on a wet patch of moss, and as he put his foot down to catch himself, his knee bent in ways it isn't designed to do. Ouch. As much as he would like to deny it, it looks like surgery is in his future. You can't tell from this picture, but his knee is swollen to soccer ball size.

 

After I got him safely home and doped up on Vicodin, I had the job of telling the girls. I learned quickly that giving bad news is not one of my strengths. I started with something like, "Girls, Daddy fell on his bike today..." and before I could jump into the "He's OK... he's fine... but...", Nina burst into tears. The poor girl was sobbing, and Elise put her arm around her in an effort to comfort her. Of course, all of this turned on the faucets in my eyes, so there I was blubbering away, trying to convince Nina that he really is OK, that he is sitting at home watching TV and eating cookies. Nice way to give her confidence in the situation, huh? I clearly failed that little parenting test.

It looks like we have a long, long road ahead of us with surgery, crutches, physical therapy, and lots of moaning and groaning from him about not being able to bike, and lots of whining and complaining from me about pulling double-duty in the parenting department.

In the spirit of Thanksgiving though, I suppose I should find the blessings in all this. J.C. will tell you the biggest blessing is that this injury happened at the end of the Snowshoe biking season rather than the beginning. I feel blessed that he injured a fixable knee rather than his head, neck, or back. There... blessings have been counted. Now can I say that this all really, really, really sucks on so many levels? Because it does. Really. Suck.

If You've Ever Wondered...

...what it might look like to get stung by a bee on your eyelid, now you know.

  

 

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!

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.