 | ||
| Photo | By Holly McRae Jun 28, 2013 -- Kate showing *attitude*! |
I find myself at a loss for words and overwhelmed with quiet emotion. We met with Kate's oncologist to review the MRI today and received the incredible news that the MRI looked the same as the last one! There are no new tumors, and the two recurrent, metastatic ones are not visible on the scan anymore and there has been no change in the original tumor bed. All very good news!
It was the first time we even talked much about where we go from here at an appointment. We did decide we are going to continue on the same treatment for now, and continue with 2 month scans. And somehow that sounds wonderful.
Very rarely have we looked at Kate's brain scans and smiled. Oftentimes we have viewed them through the cloud of tears. Not today. On the images you can see the surgical area, and the changes that have inevitably taken place in her brain. But the fact that the original tumor area has not changed most definitely evoked a huge smile. And of course we asked, "do you believe that the remnant in that area could still be cancer, or rather changes to her brain?". He replied we haven't proved it isn't cancer, but we haven't proved it is either. However, he would lean more heavily toward it being scar tissue, as opposed to cancer. Of course what we wanted to hear.
So I inevitably know people will wonder what this all means, for now and for the long term. First, it means we are incredibly grateful for more time with our sweet girl. And we are thanking Jesus for that sweet gift. It also means the radiation had a profound effect on the metastatic cancer lesions. And there is the possibility that the area of change they noted last February in the original tumor area is simply changes to the brain from treatment. Here is the hard part. We have still only heard a 5% survival. Talk about hard to digest! However, we didn't even go there today. We did talk briefly about possible other treatments in the future, if need be. And the reality that if these stable scans continue at some point we will need to stop her current treatment. Most attempt to stay on it one year. Some have gone longer. No one knows how long kids can stay on it. So we will cross that bridge when we get there. But that will be a great crossroads to get to.
For tonight, we celebrate one more step. One more sweet victory. This is the fourth consecutive scan with no change in the original tumor, and the disappearance of the 2 new tumors since the full brain radiation. For tonight we will leave thoughts of the future alone and celebrate the sweet grace we have been given today. Thank you for persisting in prayer with us. We have a long road still ahead. And yet today was so sweet.
We have many prayer requests. Many. So tonight I will name a few pressing ones.
~that the original tumor area on the MRI will show NO change (this is hugely important)
~that the two new tumors would be gone on the upcoming MRI
~that Kate's abdominal pain would subside as she has been barely eating
~that her energy would increase in the next few weeks, so she would be able to start first grade
~that God would miraculously touch Kate's body, eradicate the cancer, heal the damaged areas of her brain, protect her vital structures that are at risk and preserve her vivacious spirit.
That's for sure.MRI on Tuesday....
We always tend to get reflective right before a major MRI. I clean and do my usual organizing. I wonder if it comes from the fact that the day Kate was initially diagnosed I left things in chaos at home. Bowls of cereal half eaten, laundry everywhere, we just dropped everything to go for the CT scan. I didn't step foot in our house again for almost 2 months. Now I always feel the impending desire to have everything in order, just in case we wouldn't come home. I truly don't believe that will be the case, but wonder if experience has dictated these new instincts in me.
The other day we were driving somewhere, it was probably 130 degrees out (slight exaggeration, but only slight) and the kids were giggling about something in the back. I quietly asked Aaron if he could imagine life without the impending thoughts of cancer, without the constant thought if Kate would be with us the following year, without death being a very real and talked about topic. Some are healthy changes. Healthy changes amidst a very gruesome disease. And yet we are still mourning other life changes. Bittersweet. Only occasionally do I let myself even wonder what life would have been like. What sweet Kate's life would be like had cancer never come knocking. I can't let myself stay there. It did happen, and life is different. It will always be different now. I just pray different will become sweeter over the days ahead. Less of the bitter, more of the sweet.
Kate's hair is starting to grow back some. It's interesting so far. Darker in spots. Thicker in others. We still can't tell if it will all come back yet. I get nervous for her some days. The thought of potentially having some permanent hair loss at the tender age of 7. It would be just one more battle to face. I love however that Kate rarely cares, of course she is sure her hair will come back at some point. And of course there is the occasional day that someone stares too long, or turns around to take a second glance, causing her to rethink letting others see beneath her hat. And then of course the fierce mother instinct comes out and my eyes say a million words to them that my mouth cannot. And yet, the other day she offhandedly said she wants to work on being more brave. Where she can take off her hat more readily in public around people she doesn't know. And I tell her she is incredibly brave already. She is forgiving of peoples unashamed stares and rarely complains about not having hair, when most are never thankful for the simple fact that they do have hair. I love that she has a new found confidence in the face of a physically altering illness. That speaks volumes. She is crazy beautiful anyways. [READ THE REST HERE]
I continue to find it harder and harder to update. Not for lack of things happening, and most definitely not for lack of emotion, simply for the lack of words. No words seem adequate for what our hearts feel, on the good days and on the awful days. It is a constant daily battle to reign in our thoughts and fears concerning Kate. Being that I am the one who engages more of the medical side of Kate's diagnosis and reads more of the literature concerning it, I tend to struggle with it more heavily.
Kate is doing well. Of course everything is relative, and that being quite relative to her diagnosis. We are grateful the last chemo did not cause more symptoms or side effects in Kate than it did. She is easily fatigued, which is probably more related to the radiation, and continues with stomach pains here and there. Her appetite is unpredictable, so again we are having to be less strict with what she eats, simply to get her to eat some days. I have noticed that she also seems slightly less engaged with others outside of our home. I am not sure as to the reason, and have stopped guessing. I simply cherish the moments we see her full throttle at home.
Kate was horribly disappointed to learn that she would be getting chemo again this week. I guess she had forgotten. We had not! It has been a delicate dance learning to be grateful we have something to fight with, while at the same time despising those very treatments. She will have her bloodwork drawn on Tuesday to see what effect the chemo had on her blood counts and then proceed with the infusion of her biweekly chemo. I am sure we will also discuss a starting date for the Avastin, and begin scheduling her next MRI. We are obviously no longer on the every 3 month plan for scans. I was actually hoping for monthly MRI's and have realized that 2 months for now is probably best. It is a very delicate balance not scanning too early, and yet not allowing too much time to pass if cancer is growing unnoticed. If we scan before we allow time for the chemo to have an effect, there is the possibility we could see growth and take her off of one of the few medications that may work. The reason for not desiring to scan too infrequently is obvious. So our thought is her next MRI will most likely be early to mid July.
This month marks the 2 year anniversary of Kate's diagnosis. God has been working ferociously on my heart the past few months concerning just that. The disappointment and at times anger for that which she is faced. How we had hoped and prayed that at 2 years we would find our sweet girl cancer free, that we would be celebrating God's faithfulness and His mercy in allowing Kate freedom from the clutches of this disease. Rather we find ourselves battling 2 new tumors and facing the uncertainty of an aggressive and unforgiving disease that almost always ends in death. We find ourselves facing the ramifications of having had to aggressively radiate her entire brain and spine in hopes of sparing her life. We find ourselves craving the days past where getting the tangles out of her curly blonde hair was the most frustrating part of the morning. Now we wonder if her hair will ever come back.
And yet, despite our raging disappointments, God continues to be faithful. And He most definitely continues to be able to heal her. As much as my heart yearns to see her walk again without a brace and to see her right hand paint so beautifully as it once did, I am reminded she also faced a day she could not move her right side at all. A day when thoughts plagued us if we would ever see her move outside her wheelchair. If we would ever hear her sweet voice utter our names again, or tell us she loved us. So we celebrate the blessings mixed in with the current pains. We continue to fight for her life, and for her quality of life. And in the same breathe realize this life is not our ultimate home. Never have I been more grateful for that.
Tomorrow we celebrate a very sweet day in our daughters lives. Aaron will be baptizing both Kate and Olivia. So tomorrow we celebrate those things God has done in our daughters lives. And the rest of the week we continue the treatments hoping and praying Kate will have a lifetime to share those things with others. Thanks for being persistent in prayer for Kate's healing.
We have been contacting various healthcare specialists around the country researching potential options, as Kate's healthcare team does the same. If things would proceed in an undesirable direction, we will need to be making rather informed, but quick decisions. We continue to cry out for healing for our baby. It would be nothing short of miraculous for the PET scan to come back not indicating cancer. We are boldly praying for that.
Here are a few requests for those who will partner with us:
For Healing… for Kate’s complete healing from top of her head to her toes
Psalm 107: 19 Then they cried to the LORD in their trouble, and he saved them from their distress. 20 He sent forth his word and healed them; he rescued them from the grave.
For Wisdom… for Holly and I, for the doctors, and people we consult with
Colossians 1:9 For this reason, since the day we heard about you, we have not stopped praying for you and asking God to fill you with the knowledge of his will through all spiritual wisdom and understanding.
For Jesus to be Glorified… for Christ to be seen as POWERFUL & to be praised
John 11:4 Jesus said, ‘This sickness will not end in death. No, it is for God’s glory, so that, God’s Son may be glorified through it.’
Again, I want to thank the countless people who have prayed and encouraged us for some time. We would be honored if some of you could join us in this day of seeking God in prayer and fasting. Please pass this along and ask others. If you need some guidance in fasting, I have found this site to be helpful: Awake21 particularly the ‘Prayer, Fasting, and Personal Devotion Guide.’
 |
| Will, Aaron, Holly, Kate, Olivia From The TomKat Studio |
