Tuesday, May 24, 2011

May 24th Tuesday: MRI Results

Charlotte had her MRI this morning.
 The details of the procedure were not so good.
Unfortunately she woke up screaming mad, the combination of drugs that they used for anaesthetic did not leave her in a happy state. Plus they used tape over her eyes, (we learned during radiation that she is quite sensitive to the medical tape on her skin) but we have never seen them use tape for MRIs so we didn’t know to request NOT to use it. So her eyes were all puffed with red squares- the solid hour of screaming didn’t help either I’m sure.

 The real news of Charlottes MRI was not good either.
The area in question, the "thickening" that we saw four weeks ago has grown. It is low in the back area of her surgical cavity. Our oncologist says it is clearly cancerous. There is a second area showing now too, with a nickel sized tumour growing near the top of the surgical cavity.

 What now, we are wondering? Both areas of reoccurrence are within the original field of radiation. They have given her the highest dose of radiation possible to that area already; that means that radiation did not help. She has had the highest doses of chemo, the protocol best matched for her cancer. Chemo has left her system fragile and there is not much more they want to give her as it would have too high of risks. We have tried naturopathic medicine on the side (despite wincing from our conventional doctors when we mentioned it.) I don’t think that we have the time that is required for anything from the naturopathic field. We are continuously praying for a miracle that is all that seems left for us to do.

Our doctor is going to look into any trials and studies that we might be eligible for; it does not look like there were any really promising ones for Charlotte’s case. She is in contact with St Jude’s in Memphis and Sick Kids Hospital in Toronto to see if there is anything available. The main trial that she suggested we look at is only to test the toxicity level for children of a new chemo. This chemo has not been proven to do anything for PNET tumours in kids but has shown to slow tumour growth in the lab. – But there could always be an unexpected result. It looks like we will be given a choice of quality vs. quantity of life. We have to decide if we want to chance making her sick and tired to try it out. Even if it does affect the tumour, our doctor warned it would not be enough to cure her.

 Charlotte’s oncologist told us that she does not have anything else to try that she would realistically expect to cure Charlotte. She asked about what we have at home for palliative care options. When we asked what she expected for our time together, if we did not do any more treatments, she had no answer, not a hint. It sounded like one day Charlotte will just start showing symptoms again, or start having seizures. Weeks? Months? We dont know.

 I would like to tell you that although all this is going on Charlotte continues to feel well. She is happy and outwardly healthy. She was so happy to see Yolanda when we got home, the two of them scurried off to show each other the new pictures and stickers that they had done as soon as we got in the door. They were singing away upstairs until we had to break up the party for bedtime. We have not yet told Yolanda what we were told in Calgary. She is a smart girl and she sees everything that is going on but we are not going to tell her everything just yet.  

 Here we are once again turned upside down. Please hold us up in your prayers as we are not sure how to hold ourselves up anymore.

Sunday, May 22, 2011

May 22nd Sunday: Upcomming MRI

I just wanted to let everyone know that Charlottes MRI will be Tuesday 24th at 8am. We are counting on seeing ...NOTHING. At least no change in anything. Our doctors are hoping to get a better idea on what is (or is NOT) going on in one area of her head. We would appreciate you goining in prayer with us THAT CHARLOTTE IS CLEAR FROM CANCER.

Psalm 91:9-16(NIV)

9 If you say, “The LORD is my refuge,”
and you make the Most High your dwelling,
10 no harm will overtake you,
no disaster will come near your tent.
11 For he will command his angels concerning you
to guard you in all your ways;
12 they will lift you up in their hands,
so that you will not strike your foot against a stone.
13 You will tread on the lion and the cobra;
you will trample the great lion and the serpent.
14 “Because he loves me,” says the LORD, “I will rescue him;
I will protect him, for he acknowledges my name.
15 He will call on me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
16 With long life I will satisfy him
and show him my salvation.”

Friday, May 20, 2011

May 20th Friday: Family Photos at Fort Steele

We were very spoiled this week by some of friends who treated us to a photo shoot with Ryckman Photography. We had a fun afternoon out at Ft Steele and Ryckmans captured some wonderful pictures. For a few more pictures check out their blog http://ryckmanphoto.com/blog/?p=4568
This girl melts my heart, what a beautiful little lady. I keep wondering, when did she grow up so much? Here we are getting her registered for Kindergarten already! Maybe it’s because we missed so much of her this past year, maybe that just the way kids grow up anyways- too fast. We are so proud of what a wonderful big sister for Charlotte she has become. She is so patient and forgiving; and she always keeps an eye on her- ready to give me a full report if I should miss something. Haha, I'm a little surprised that we were able to get a picture with her mouth closed; she has become such a little chatterbox!
And look at this girl! The life and spunk in this girl is growing every day. Being at home so long has done wonders. She has finally gained some weight... for the first time she weighs more that she did a year ago when she was first diagnosed. With every gain in energy she also gains some cheekiness though, we get glimpses of what having a redhead two year old might have been all about. She is getting around much better too, trying her best to keep up with Yolanda. If Yolanda gets too far ahead or out of sight she gets a shrill reminder of "YA-LA" and she will wait up. About a month ago she started to try going up and down the stairs again- a little scary for us, but she was quite confident in no time at all. That was a nice step in her independence since she didn’t have to sit at the bottom (or top) and holler "mam....Mam.....MAM!...." until mommy finally got the hint. Her language is slowly growing as well, at least to us it is- I’m not sure how much someone else would understand. She is still not quite putting words together, but her vocabulary is growing. Next step we have been told to work on two word combinations... that should be interesting as our other daughter tends to speak in one run-on sentence from the time she gets out of bed until night.

See that cheekiness? Those "redhead" traits, stubborn determination... They have served her well this year. I love the picture above, she seems to have an air about her. "Don't mess with me, I don't have to prove anything. I know how tough I am." Her scar is fading a bit, and some of her hair is coming back. There is still quite a big bald spot where the concentrated radiation was, we were told that it may never come back there. I guess we will have to keep an assortment of fashionable hats around!

... ...Speaking of hats (off on a tangent for a moment here) do we have any talented crocheters out there who would like to tackle making a hat for Charlotte?  I found a couple of cute ones with little brims and flowers...
And now back on track here with our picutres.... with still more sas!

I would like to let you know that YOU have a chance to have your own family photo sitting with Ryckmans this year. In a wonderful gesture to help support us in our journey the Ryckmans have offered to auction off a sitting package worth $375. The auction will take place on May 25th & 26th.  For more details please check out their blog http://ryckmanphoto.com/blog/?p=4568 Here is some details off their blog: "The bidding will start at 9am on May 25th and end at 5pm on May 26th. The auction will take place on our Facebook site – please click this link here – FACEBOOK. We will post a picture of Charlotte on our Facebook page wall and you may bid directly under it in the comment box."
The previous two are Yolanda's favourites, she likes the one where she is a flower.