Day 661

     So, we are on the final stretch - 6 months of treatments left  - what else could possibly happen...Right?...... Wrong!  Much to our shock and dismay, Katie's hair is falling out again.  I guess it is the increase in the chemo (but the increase was just supposed to compensate for how much she has grown, so we thought it would all balance out).  A long time ago the doctor told us this could happen again, but we thought we were past that - we were not expecting this at all!  Katie's hair has gotten so long and thick, it is almost impossible to conceive of it falling out again.  I guess I have been in total denial about it, all the signs were there, but I didn't put it together - until a few days ago.  We were swimming and I could see Katie's scalp, and I was worried about her getting sunburned - and then I thought, "Why am I seeing her scalp?"  And then reality came flooding in... not quickly or immediately... but slowly throughout that day.  --When I brushed her hair a lot came out... And even when her hair was dry, I could still see her scalp... I recalled that last Sunday I had on a black shirt, and midway through church Katie pointed at my shirt and laughed - my shirt was covered in her hair - I remember thinking, "Wow, this shirt really collects a lot hair"... I also remembered looking at her car seat last week and thought, "That is weird, there is a lot of hair all over it"...  I just never put it together.  Denial I guess.  So, it all finally came together in my mind this week.   And actually a few times since then, I have still thought, "Maybe I am just overreacting, maybe it really isn't falling out" - but it is - all over - all the time.  In the bath tub, in the hairbrush, in my hands, in her mouth, all over her, all over the place...
     Her hair is thick, so she still has a lot.  For now it is just thinning.  It always thins out on top first (just like a balding man).  I don't know if it will fall out completely, or if it will just thin out - but either way, I think we might have to cut her hair short again....  Everyone always comments on her hair, how long it is, how pretty it is, how much it has grown...  How do we tell her that her hair is falling out again?  How will she take it?  Now that she is older, will it upset her when people stare, comment, or laugh?.... Scott and I are sick about it.  I don't want her to be made fun of, and I don't want her to feel embarrassed.  I am trying not to get down about it.  I know it is not a tragedy.  It's not like the cancer is back.  It is just the chemo doing its thing.  I know her hair will grow back, and hopefully we will never have to go through this again.  But we just weren't expecting to go through this now - again!  We thought we were past all of this.  But the "surprises" keep coming.
    The day after I figured out that Katie's hair was falling out, I went shopping and bought outfits for Katie and Conner, and took them to get their pictures taken.  It was already on my list of things to do, but it got "bumped up" on the list.  Katie has a rash on her face (from the chemo) and I was waiting for that to clear up, but now that her hair is falling out, there was no time to waste - so I put some make-up on the rash to cover it up.  The pictures turned out great - and I am very glad!
     Katie goes to the clinic this next week (on Thursday) for her next IV dose of chemo.  We will speak to the doctor about all of our concerns.  This higher dose of chemo has definitely taken its toll on Katie.  She still has a little sore on her lower lip, and she looks paler than usual, and of course her hair falling out... 
     I have been in regular contact with the Endocrinologist.  He said that what we are doing (stopping the steroid and giving a 3 am snack) is "acceptable."  And it was working fine until today.  Katie had a rough night.  She was whimpering and moaning and twisting and turning.  Finally at 2:30 am I couldn't take it anymore (worried), I woke her up and asked her what was wrong.  She didn't know.  I gave her the early morning snack.  She seemed fine, she got up and went to the bathroom.  However, she was still very restless after that - still tossing and turning, and whimpering occasionally.  It was like she was trying to "fight off" something all night.  At 6 am, I couldn't take it anymore (again) and I checked her blood sugar - I wasn't really expecting it to be low because I had fed her at 2:45 am - but it was low - 57 - which isn't super low - but still low.  Katie was very symptomatic at that point - sweaty, weak, shaky, feeling sick. I feel so sorry for her....   We don't know what is going on with her- the doctors don't know what is going on - nothing seems to be working.  --The Endocrinologist did call in a prescription for glucose gel and glucagon kit in case of an emergency (if Katie becomes non-responsive).  He also prescribed a hydrocortisone shot and said if she ever gets flu like symptoms or throws-up repeatedly, that I should give her the shot and take her to the emergency room.  (Really??  Katie has already had flu like symptoms - and has thrown-up repeatedly - and NOW he tells me this?...  Why didn't I have all these things before?  Why did he only get proactive now - after the nurse told me he should be more proactive and they should be doing more to help - and I had to ASK for a glucagon kit-  after I found out there was such a thing as a glucagon kit...)  I don't understand it.  I am frustrated with the doctor - and I am frustrated with what is going on.  I am worried about Katie and I don't know what else to do to help her.
     To add to the worries, we have been infested with scorpions - and it is not just us - it is our neighbors all around us as well.  (Scott says, "We are not infested with scorpions - we just have an occasional scorpion." So, okay, maybe not "infested", but there have been too many - one is too many).  My neighbor and I sent our husbands on an outdoor scorpion hunt the other night, and I go on nightly scorpion hunts (with a black light) inside the house (multiple times a night).  It is a daily/nightly worry and stress. 
     As for Scott's parents, we are still in waiting mode.  Scott's mom is getting around in a scooter chair, and his dad got a PEP scan this week and had a biopsy on his lung.  So, no surgeries yet, just tests and more tests and more waiting. 
     "As we live on earth we must walk in faith, nothing doubting. When the journey becomes seemingly unbearable, we can take comfort in the words of the Lord: 'I have heard thy prayer, I have seen thy tears: behold I will heal thee' (2 Kings 20:5). Some of the healing may take place in another world. We may never know why some things happen in this life. The reason for some of our suffering is known only to the Lord."  (James E. Faust, "Where Do I Make My Stand?" Ensign, Nov. 2004, 21)