Thursday, February 9, 2012

Induction Phase Day 21 -mouth sores, finger pricks, good news

Parents Gone, Ryan back to Work
I was a little scared to be home alone with Lincoln all day all week. Ryan went back to work and my parents took Sawyer and went to DC to visit my sister. It's been okay though. I'm positive if my parents would have left Sawyer here I would be completely overwhelmed and unable to manage. Lincoln is really high maintenance. And I don't blame him. The doctors said that coming off of steroids can be as bad as being on them as far as irritability, but Ryan and I are starting to worry that this is just how he is right now. He's been of the steroids since Friday and he's still so cranky and volital. Everything sets him off...the big things like forcing him to take his medicines and the little things like changing his diaper or clothes, brushing his teeth, taking a bath, wiping his hands...those things he used to handle fine. Now he cries and fights at everything. His voice is totally gone from all the streaming. So, if Sawyer were here it would be too much. I sure miss the little guy though. The forgotten child. That's what it feels like.

Home Care Finger Pricks

Eric is our home care nurse. He comes once a week to take blood samples. The first week he came went well because Lincoln had no idea what was coming when Eric pricked his finger. Then he of course cried but got over it quickly. On Tuesday when Eric came for the second time I geared up for a big battle since Lincoln might remember the last visit. To my amazement he did great! He held out his finger, Eric pricked it and Lincoln didn't cry at all. I couldn't believe it. Eric put the bandage on and was gone. About ten minutes later Lincoln took his band aid off and started bleeding all over. His platelet levels (platelets clot your blood) are very low so his blood was thin and coming out fast. Also, any cut can be a potential source of infection so I got really nervous and tried to put a new band aid on him. Then came the battle. He was furious and did not want a band aid on. My friend was over and we had to pin him down and hold his hands apart for several minutes so he wouldn't rip it off with him screaming and flayling the whole time. When we let go he ripped the bandaid off but luckily it didn't bleed anymore.

Mouth Sores

I feel like this week would have been so much better if he didn't have his blasted mouth sores. They are a reaction to his chemo therapy and to treat them we give him a medicine FOUR times a day. So on top of his mouth hurting making him grumpy we have to do the medicine thing all day. It seems he's just recovering over the trauma of the last dose when it's time for the next. Fighting the medicines is one of the worst parts.

Good News from the Biopsy

On Monday we found out the results from his Friday biopsy. They couldn't see any cancerous cells in his bone marrow! I can't tell you how wonderful that was to hear. I guess the goal is to kill all the cancer with in the first 30 days so he is right on track. Then the next 3 years are spent keeping it from coming back. The doctor was very careful to remind me that he is not yet in remission, but that this is good news for now. A week from Friday, on the 17th they'll do another bone biopsy that is much more detailed, sensitive, thorough and accurate. If they don't see any in that one then he'll be in remission. In other words, just because they didn't see any in the less expensive, less accurate test last Friday doesn't mean there aren't any...but it's still a really good sign. And I'll take any good signs I can get. After such a bad weekend I was so glad to hear that all of this seems to be working.


K said...

Cheryl, I just read all your posts about Lincoln. I cannot imagine what you have been going through and I'm sorry that I have been out of the loop. I want to help in any way I can.
I'm so glad you're letting yourself be honest and sharing your story. You and Ryan are amazing. You are in our thought and prayers!

Laura said...

This breaks my heart for you and I don't even really know you. Keep it up. You are a good mommy. My brother in law had the same thing at Lincoln's age (I may have mentioned that.) I was telling my husband about you and how my heart was aching for your situation and he said one good thing about his brother and having this at such a young age is that he doesn't remember any of it. My husband was his older brother of 5 years so at 8 he remembered a lot of the goings on and it was tough back then too. You are amazing to me and Lincoln is lucky to have you and your parents to help too. You baby is not the forgotten child. He is living it up with his grandparents. That is pretty awesome itself. My kids haven't seen their grandparents in over a year. Anyway, I hope you are doing okay. Keep it up. I am so sorry. I really do ache for you and think about you almost everyday hoping for the best.

Laura from the gym

Amy said...

You don't know me but I am in your parent's ward. My name is Amy Briggs, and I have been reading all the updates you are posting about your little boy. Even though I don't know you, I want you to know my thoughts are with you. I have a 21 month old boy and I can't help but think what I would do if we found out he had to go through something like this. It is every parents worst nightmare. I admire you for being so strong! I can tell you are a great mom! Lot's of love and prayers coming from Utah!

Tracy Peterson said...

We are so happy to hear about his test results! We will keep praying that his next test results will come out well, too! You and Ry are so strong and amazing! I know I always tell you this.. but Lincoln is so lucky to have you are as parents! We think about and pray for your family every day! XOXO

DC Diva said...

Sawyer is doing great here and getting plenty of love and bounce. :)

I'm sorry Lincoln is still so unhappy. Poor guy. His whole world got turned upside and he doesn't know why. He has every right to be angry about it. Wish I could take the pricks and meds for him.

Doug and Leslie said...

That's wonderful the results were so good. We'll keep praying for the next one to be the same!

Sarah H said...

Keep strong, you are doing a great job! So glad to hear the good news. Your family continues to be in our prayers.