Snow Suits in April?

According to Storm Team 8, the last time we had snow this late in the year was over 50 years ago! I wasn't aware that we needed our snow boots after Spring had sprung, but I guess when you live in the NW, you never know exactly what to expect. Tornados in Clark County, Snow in late March...What's next? A tsunami in Portland?

She Sleeps!

Baby O has been sleeping through the night now well over a solid month (probably closer to two, actually...she's almost 6 months old!!). But I could not, for the life of me, get her to sleep for naps in her crib. She's been "napping" in her swing a couple times a day since she was teeny and the older she gets, the harder it is for her because the noise disturbs her (Or Hunter shares a toy with her and that wakes her up.). The problem still remained that she would not sleep in her crib during the day, no matter what I tried. I tried, rocking her to sleep, to almost asleep, giving a bottle right before, offering a pacifier, I even tried the "cry it out" method a couple times and Baby Girl is strong-willed.

We have blinds on the windows, but they don't keep out the light during the day, so I finally decided to quit waiting until I have time to go find curtians and just hang a dark blanket over her window for now. Yay for me, she just took a 2 hour nap in her crib! I see my days looking up as my last child gets on a similar schedule to her brothers and I can plan my days a little bit better!

Hmmm...

Went in today and my platelets are at 123k. While this is still a great number, it's down 121k since last week, and last week was down about 80k from the week before. My dose of AMG531 was upped to .7 micrograms (yes, I finally figured out what the dose was) from 6 the last 3 weeks and with each increase, the achy feeling in my bones gets worse. Today, I'm actually alternating Doan's with Tylenol to try and alleviate some of the pain, and sadly, it's not working very well! I'm about to head to bed, but I wanted to post a quick update!

Happiness!

Today was a great day as far as platelets go. I have lots! My count was 244k today!! We left the dose of AMG 531 at 6 and if my count stays high and in a range close to what it's been the last two weeks, we get to start talking about injections at home (Or at Marisa's house...she's my personal nurse, I just can't afford to pay her full time yet). This makes me so happy because once I start injecting at home, I only have to go in once a month for lab work and life can start to calm down and return to 'normal' - whatever that looks like with three kids! I just wanted to take a minute and say thank you again to everyone who's been asking about me and praying for me and us during this season. It's been such a long hard road and I know that it would have been so much more difficult without the support of our friends and family and most importantly, the grace of God.

Not Just for Back Pain Anymore

So last week when talking to my Hematologist (who from here on out shall be referred to as "Dr. K") I mentioned the achy feeling/bone pain I have after getting my injections. She commented that it would make absolute sense that my bones were "achy" because we were 'asking my bone marrow to work harder'. Phew! I'm not crazy! (Well, concerning this, anyhow!). Since people with bleeding problems are not supposed to take ibuprofen she recommended I take some Doans pills to relieve the pain that acetaminaphin didn't take care of. The Magnesium Salicylate relieves pain and inflamation like ibuprofin, and in fact, is listed in the same 'class' of drugs as ibuprofin, but is safe to take if you have bleeding/clotting problems. We actually had some at home, so I was able to take some and they worked so well! It's so great to have an alternative to Tylenol (which as far as I'm concerned is a waste of money...it does nothing for me) that actually works and is safe for me to take.

The More You Know (And shooting star...)

Platelets are 312k. More later when I have time to actually tell the story!

ITP Update 3/11/08

Sigh. Last Friday I noticed that there may be some cause for concern about my platelet count. I called the doctor and after a couple games of phone tag, it was decided that I needed to go into Legacy Salmon Creek Hospital and have a lab drawn. My platelet count came back at 17k, after being 52k just 2 days before. The Hematologist on call decided that I didn't need to be admitted that night, but that I would for sure need to go into the infusion center the following morning to have 60 grams of IVIG. A platelet count drawn that following morning came back at 9k. I spent my Saturday being infused with ivig. So fun! The only thing I can say about getting ivig at Southwest Washington infusion center is that a friend of mine from PBC is a nurse there and she takes good care of me!
I went in on Tuesday for my regular appointment and my count was 312k. Hooray! I had another dose of the AMG 531 and the schedule for that trial isn't interrupted at all by the ivig.
Over the course of the last couple weeks, I've noticed that I've been increasingly tired and lethargic. My hematologist had checked my iron, but didn't say anything about it, so I wasn't thinking that my iron levels might be low, I thought it was just a side-effect of the injections. Some iron was called in for me by another doctor, but I wasn't able to get it until Monday (Joel went and picked it up after work). All day Monday I was exhausted and by Monday night, to move at all was a huge chore to almost impossible. All of that to say that I started taking the iron pills on Monday night and I feel 200% better today. It's amazing. I asked the hematologist about it yesterday and she said their cut off for anemia is 36 and I was 35.1, technically anemic.

This makes Joel and I laugh

I can't figure out how to make it straight.

ITP Update 3/5/08

Good evening!
Sorry this is a little bit late! I had to reschedule my appointment from yesterday to today because Joel got stuck with a client at work and couldn't make it home in time for me to go last night.
I went today and my count had dropped from 137k to 52k since last week. It's still a decent number, but they went ahead and upped my dose to 6 this week (from 5 the last 2 weeks). Michelle, the nurse in charge of the study, really feels like we are closing in on a number that will work for me and be able to keep things stable. In the meantime, though, as the dose keeps going up, the side effects seem to be a little worse each week and I'd love to just hold off and keep the dose level for a while. I keep reminding myself that me being on the drug may just help someone else in the future who is unresponsive to the first line courses of treatment for ITP and someday, this drug may save someone's life. It's nice to put it in a bigger-picture scale sometimes so I don't get too focused in on myself and how this is all affecting me.

Until next week!