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Posted 2019-09-17T21:48:45Z

Nee Chemo

Balian was approved for this new chemo. We made our way to Albuquerque to have a meeting with Dr. Abraham to sign the consent paperwork. This new chemo can be taken up to 2 yrs. The chemo will arrive on Thursday and we will start on that day. And have a follow up appointment next week. And we will also need to get an MRI done of his leg too. There is a large mass that is starting to protrude and we need to find out what it is and treat it now. [...]

Posted 2019-09-14T01:03:27Z

Talking

The other day I realized that I dislike the commentary about Balian's treatment plans from anyone.  On some days I can brush off the comments with a smile and a nod.  Other days it brings me to tears to think that maybe I'm not enough.  Those days it hits me to my core.[...]

Posted 2019-09-14T00:30:59Z

News

Doctor Abraham called and gave us the news on Tuesday that we were kinda waiting for...there is a new treatment plan in the works.  This time (with insurance approval) he will be on a 28 day cycle with a chemo tablet taken everyday.  We don't know the ins and outs of the plan but will get all that information with our next meeting.  The day that meeting is scheduled they will also make an appointment with Dr. Chafey to see about the lump on Balian's leg.[...]

Posted 2019-09-10T21:46:28Z

School

Balian did a second day of school! He is enjoying his time at school. He even did the picture day picture on Monday. I am happy he is attending and most importantly enjoying school. [...]

Posted 2019-09-05T20:32:13Z

Home

It's been about 3.5 weeks since we have been home for longer than 1 night. I am beat and tired. Balian slept until 1 pm today too. We are happy to be home. Balian thinks he may want to try a day at school tomorrow. I'll see how he does today and go from there. [...]

Posted 2019-09-03T02:51:11Z

A Good Day

Today Balian and his brother got to spend some time together in the teen room. They loved spending the past two and a half days together. I am happy I got to spend some time with Timothy too. I did get my share of frustration with the increased visitation but I wouldn't have changed it for the whole world. I felt like a "normal" mom.[...]

Posted 2019-08-29T17:41:37Z

Breaking Down

I have had trouble these last week.  I am unsure of myself to give Balian the strength to make it through this treatment.  I worry that everything is hurting him physically and emotionally more than I can fix.  I look at him and see the procedures that I had to allow happen.  I know exactly what I have agreed to let them do to my son.  I didn't go into this without knowing they are poisoning him and cutting into him.  I hate that when people see me and ask "How have you been?"  because I haven't shared too much of what is happening with our family, I completely breakdown.  I hate that feeling.  The lost of control over any aspect of my life and that of my kids.  I'm missing time with Timothy.  I'm missing time with Eric.  I'm missing time that can never be recovered.  How to make it right?  How to I come out of this with the least amount of damage?[...]

Posted 2019-08-29T17:30:11Z

The Word From Dr Abraham

Doctor Abraham came in to see us yesterday with an outline of his treatment plan.  The side effects are outweighing the benefits.  The next time he gets the dose of chemo that is causing all this might end up damaging his heart, kidneys, liver, or any number of internal organs.  As of now he is 8 weeks without the chemo Docetaxel and he is still has full side effects happening. We are hoping that we could've tried to be more aggressive with the preventative measures but even then the side effects are exceeding our measures.  Balian has 2 infections that he is fighting and happened because of the edema in his body.  So this means we are kinda back a square one with treatment.  [...]

Posted 2019-08-29T17:07:29Z

Update

We got into UNM on Saturday night and were taken into the pediatric ER.  Balian's blood pressure was fluctuating before the flight in Farmington so we had to be taken to the ER so they could stabilize him before being taken to the 6th floor.  Eric and my ma had taken off from Farmington with the car filled with our clothing, furniture and such.  Balian and I got to the ER and he was stabilized at 11:30 pm.  After we were taken to the floor Balian was re-accessed using UNM needles.  We have spent the last few days in the hospital trying to get him better and the pneumonia cured.[...]