ITP Update 4/29/08

Platelets were 75k today, down from 196k. My doctor decided to go ahead and reduce my dose of AMG 531 from 8mcg to 7mcg to see if it makes any difference in the amount of pain I'm in every day. I don't anticipate much of a change this week, but hopefully next week if we go down again it will make a difference.

More of the same - ITP Update

Platelets were 196k today, up from 89k last week! Yay! Dose of meds stayed at 8 (same as last week) and the only thing really any different this week is pain management. I spent a little while discussing this last week with my nurse and the nurse in charge of the study. This week, I had pain all the way through to last night, even. It's been more common to have it start to be significantly better by Friday and the weekends are usually really good, but this week, that was not the case. I hate being dependant on pain meds, but on the other hand, I need them for the constant pain I'm in.

If you believe in prayer...

Please be praying for my friend Holly. She delivered her twin girls Sabrina & Sophia last night around 8:00pm at 27 weeks, 3 days gestation. Both girls were 2lbs 3oz and are doing okay now, though Baby B had some complications during the night. Holly has also had some complications from the C-Section and while she is doing okay, she is very weak and sick right now. As any Mama out there knows, it's distressing to be sick when you know that people are depending on you, so it's hard for Holly right now on top of all the other stress that's on her.



Specifically, you can pray for continued development and health for Sabrina & Sophia, strength & health for Holly, and peace & strength for Aaron, the boys and the extended family as they go through this trying time. Let's believe for an even MORE awesome testimony of God's love and grace than they've already seen in their lives during this time.



Thanks everyone!

A Weekend Away

This weekend I was able to get away with some of my good friends. We planned a trip to Olivia Beach for the weekend and it was WONDERFUL! Sometimes you don't realize how much you need a break until you get it. We were able to hang out and watch movies, nap, hit the Lincoln City outlets and go to dinner. We made breakfast in and just relaxed, which is exactly what this mama needed. I had a GREAT time and I am excited for next year already!

Olivia is Eating!

Miss O. joined us at the dinner table tonight, so since she's just passed the 6 month mark (April 6th) I decided to mix up some rice cereal for her to eat! I can't believe she's six months old already. She's so close to rolling over from her back to her tummy. I honestly think the only thing holding her back is the fact that she HATES being on her tummy! Livi's little personality has really started to develop the last month or so and I can't wait to see who this little girl becomes. Sunday at church, there was another baby girl about one or so, sitting in the row in front of us. She and Olivia toothlessly grinned at one another and suddenly, Joel and I hear a quiet "growling". Livi was totally growling at the other baby! She had the biggest smile on her face, but she was growling at her! It was so funny.

Speaking of funny things that happened at church, an older man was sitting behind us in church (by himself) when we noticed he had fallen asleep. He started snoring! It was pretty quiet, but every so often, he'd let one out that would get a couple people to turn around and look. I felt really sorry for the guy, but since you never know how people wake up (or react to being awakened) I thought it would be best to just let him sleep since Pastor Bob was preaching at the time. Well...close to the end of service (I was PRAYING nothing would happen before the service ended) he let out this SUPER loud snort and woke himself up! He looked around to see several people totally turned around looking at him and quickly got up and left the service. I felt so bad for him!

Where are my warriors at?

I had my 12 week follow-up appointment today with Dr. K. as required by Amgen (the company producing my injection drug). First of all, I can hardly believe it's been 12 weeks of injections already! It doesn't seem like it's been that long to me. My platelet count was down to 89k today which was a little disappointing. I was really hoping that 7 was the magical dose that we'd end up at and I'd get to start injecting at home. She upped the dose to 8 today though, so we'll see what happens next week.

I was telling Dr. K. about the excruciating pain I'm in for the 3-4 days following the injection. This last week, in particular, seemed worse (I think I might have had a little bug on top of it, but didn't realize since I was already feeling poorly) and I basically just laid everything out for her. She looked me in the eye and asked me "Do you have good prayer warriors praying for you?" A little bit shocked that she asked me that, I replied "Yes! I do!" She said "GOOD ones?? You need to tell them to pray for this pain AND for your platelets". I quickly reassured her that my prayer warriors are praying for both!

I also reminded her that I have a wonderful husband who takes GREAT care of me. More and more I am learning how much patience and compassion that man has for me and the situation we are in. The nights when I'm in pain and have been with the kids all day, he comes home after a long day at work (he starts work at 7), makes dinner and gets everyone to bed for me. Without even a complaint. Seriously, I don't think I've heard him complain. Luckily, Dr. K has seen him in action and she said "YES! You DO have a wonderful husband". She's complimented him several times which makes me so happy for all he does and sad to think that she probably sees spouses or family members of patients that are NOT so supportive.

ITP Update 4/8/08

My platelet count was 201k today! It was 109k last week and 123k the week before, so after several weeks of going down, it has gone back up this week with just the AMG 531 drug and no other meds (Which, btw, the drug has officially been renamed 'Romiplostim' in anticipation of it's FDA approval which they're hoping is this summer sometime)! My dose stayed the same as last week, and I have my 12 week follow-up appointment next Tuesday. If I'm still somewhere in the 100-200 range, we will probably discuss starting at home injections. I'm so happy to finally be at that place with this whole thing. At home injections means only having to go to the doctor once every 4 weeks for a blood test instead of every single week like I have been for almost a year now.

Since about 4 weeks ago, the pain I am in for the couple days following the injection has been increasingly bad and the Doans pain pills weren't working for me anymore. I was given something stronger for the pain and it seems to be helping. It's my goal to take the stronger drug only at night so I can sleep well, and then manage with the Doans during the day so I'm coherant and able to take care of my kiddos. Luckily for me, I have a great doctor who whole-heartedly believes in adequate pain management and is willing to work with me to find something that really does work. I have to say that she's sharp as a tack and really knows what she's talking about. It's comforting and reassuring to talk to her about my ITP because she has so many years experience and she educates herself on everything new coming out.

Here's a random thing: I found out two weeks ago that one of my nurses, Dina, lived in Federal Way for a while. She attended Green River Community College for a year (I went there for a quarter before moving down here and going to PBC) and she volunteered at Auburn General Hospital. Isn't it such a small world? It's fun to be able to talk about things at home and she knows exactly what I'm talking about.

My pediatrician's office is in the same building as my hematologist, so since I had all three kids with me yesterday at the ped's office, I ran them downstairs on the way out to meet everyone at Dr. K's office. They've seen pictures, but haven't met the kids all in person. Since they're all starting to feel like family, I thought I'd introduce the kids to the nurses and staff. The boys shook Dina's hand and then pawed through her candy basket. At one point, Hunter had been digging for a while. I knew he was looking for a chocolate candy and that she didn't have chocolate so I told him to "hurry up" and he replied sternly "I'm looking, MOMMY." Excuse me.