November 11, 2012

Well, our decision was made for us.  We were faced with the decision whether to put Brynn on a clinical trial for chemo or traditional treatment.  We were definetly leaning towards the trial because it used the same drugs as the traditional but added a new one in addition that was not proven yet.  We were not able to start the trial until Monday or Tuesday which concerned Brynn because she just wanted to get going, worried that things were growing and spreading.  The one concern the oncologists had was this infection she is fighting from the biopsy that they didn't want to get worse with the trial.  We then learned on Friday that she no longer qualified for the trial because of the infection she is recovering from.  It was almost a relief that the decision was no longer ours- and the concerns we had with the trial drug were no longer an issue.  Brynn was glad we could start chemo yesterday instead of waiting a few more days.  One of the biggest concerns Brynn had was the size of the chemo pills that she was going to be taking daily.  She has really struggled with swallowing pills and she gets very anxious wondering how big they are and if she is going to be able to get them down.  They talk about "tender mercies" and I believe we had one yesterday when they brought the pill in and we were so surprised how small it was.  I teared up with relief knowing that she could do it and it wasn't going to be a huge obstacle for her every single day!
She got her IV chemo and took the pill no problem yesterday and then Brynn asked for a pass to get out for a couple hours before her next IV antibiotic.  She was feeling great so they gave the okay- she was so excited to just go to the mall a couple block away and get out of the hospital for a bit.  When we got there- we were barely there 20 min and she said her head was starting to hurt.  I gave her a morphine pill but it did nothing and she was getting worse by the minute.  I've never walked so fast pushing the wheelchair as we hurried back to our truck to get her back to the hospital.  I called them to let them know she wasn't doing well and we would be back in a minute.  She started throwing up in the car and it continued for the next hour.  Her head has never hurt so bad and it killed Kevin and I seeing her in so much pain. Her blood pressure was extremely high which they thought was from pain and if they could get enough morphine in her then it would go away.  Brynn started asking for the blood pressure medication that she had a few days before- as soon as that was given it was almost instant relief.  We were so happy to see her comfortable again.  Kevin just held her head in his hands until she knew the pain was gone. 
The night was not too bad- still pain in her back that required morphine every few hours but no headache.  We said alot of prayers last night and they are trying to figure out why her blood pressure has been going up every other day.  We pray for the doctors to be guided in knowing what to do for her so she gets the best care possible.  Brynn continues to amaze us with her positive attitude and quick wit.  She is always making us laugh and smile and is such an inspiration.  Hopefully we will be able to come home in the next few days and then will be making weekly trips to Calgary for IV chemo.  We miss the rest of our family so much and can't wait to be home all together again soon!

November 9th, 2012

I'm having  a hard time wanting to write on this blog because it still seems surreal that this turn of events is actually real and not a nightmare.  We were able to go home on Halloween day and be with our family.  We really needed to regroup and see our other kids as well.  Brynn wasn't feeling great but did manage to put her costume on and get driven to a couple of houses.  We were in close contact with the pain team in Calgary and it took a couple days to fine tune Brynn's morphine and make sure we were giving the right amount for pain and not too much and making her sleepy.  The day after we got home I was concerned that her biopsy sight was a little red around the bandage.  We took pictures and showed our doctor and we got her on oral antibiotics right away.  By Friday- 2 days later however it looked worse and was an angry red color, very warm to touch and she was sleeping all the time.  We took her into emergency and got her on IV antibiotics.  We were scheduled to come back to Calgary on Tuesday to get treatment started but unfortunately her infection wasn't cleared up enough yet.  They switched her to a stronger antibiotic and she had an allergic reaction to it.  The last few days have been rough- she has had a few allergic reactions, 2 blown IV's, a few failed attempts at new IV's and high blood pressure requiring medication.  She is getting tired of the endless doctors needing to look at her infection site and a few ultrasounds, echo, ECG and other tests.  Right now she is in surgery getting her PIC line put in. The room feels so empty when she isn't in it! She is still in unbelievable good spirits most of the time even though she has been fasting since midnight last night thinking her surgery would be before noon and it ended up not being until 5:30 pm.
One of the hardest things about Brynn relapsing is that she is such a worrier and so smart.  She asks so many questions that I have no good answer for and it breaks my heart as a mother not to be able to take all her fears away.  She told the doctors she want to get chemo going right away because she is worried it is growing and spreading inside of her.  We are supposed to begin either tonight or tomorrow.  They will keep us here through the weekend to keep fighting this infection and then hopefully we will be home Tuesday or Wednesday for a little while.  Our kids at home are having a hard time- especially Sadie.  She is so strong and doesn't want to make any of this about her but I know she is keeping it all inside and it's hard to hide it all the time.  Her and Brynn have been so close and decided to share a room again when Brynn was done treatments last year.  She is such great big sister and I'm so glad for the special bond they share. 
Brynn just returned from surgery and is having some back pain.  Time to go be with my baby.... I'll put up more pics when I'm back and on my home computer.