Kate McRae's Journal
Written May 19, 2013 9:09pmWe are thrilled to say our sweet girl had a scan that showed no evidence of disease in her brain or spine! Thrilled seems an undeserving word for such an event.
We are so grateful that if even for today God has spared Kate. She has been the sweetest of gifts. The kids shouted in excitement when they heard the news. There is nothing like seeing them celebrate after watching the heartache.
Thank you for your faithful prayers. Some of you have prayed for Kate for years, never even having laid eyes on her. Thank you. Your kindness and compassion towards our family inspires and encourages us. We hope she does the same for you. But more importantly we desire that you see the goodness of a merciful God in the ugly, and in the miraculous.
Written May 9, 2013 7:20pmOur trip to Houston with Kate went well, and was a welcomed relief from days spent there in years past. No deciding treatments, signing consents, watching hair fall out and spending evenings pouring over literature that just may relate to our daughters situation.We tried to keep the mood light, feast on tex mex and see old friends as we could. As much as we may try, it seems its always Kate that leads the way keeping us laughing and smiling as if we are there solely to play.Kate's appointments went well at MD Anderson. It was sweet to see her Radiation Oncologist and hug a few of her radiation therapists that had cared for her in years past. She smiled as they raved over how much older she looked. We were smitten by a new Dr we saw who seemed patient and willing to indulge all of our questions. He pulled up maps of the radiation fields, showed us percentages and pondered possible causes of various things with us. He encouraged us to have our own copies of certain maps and instinctively asked more questions concerning her bout with pneumonia this past fall, as her lungs had received radiation during the spinal radiation 2 years ago. He quickened our instincts for certain possibilities and calmed our nerves about the statistics. I wished we could take him home. Or call him nightly.Dr Mahajan also came in and seemed quite pleased with Kate's progress. We always love seeing her. It seems little could rattle her. We briefly touched on the risk of secondary cancers, those not related to the original tumors, rather as a result of their treatments. It was brief and yet always sobering.And then we were off to the pediatric clinic to wait for Kate to do all of her neurocognitive testing. We have spent countless hours in that waiting room. We watched families come and go. Talked with some and just prayed for others. Some wept as they left, others just looked tired. And for others it had become part of the routine. I felt strangely at home, in a community of others whose names I did not know, but journeys, even if vaguely, I related to. And yet, I simultaneously ached to go home. Home to our other kiddos. Outside of the hospital. Away from the reminders of the battle we still fight. The one with its far reaching grasp.Kate finished her testing and walked out with her prize. I asked her how she fared after the 4 hours of testing. "Boring, but better than listening to all the questions with the Drs", was her quick and cheerful reply. I smiled. Somehow she always sees the brighter side. The results will take 6-8 weeks to evaluate, compare and tweek to her situation. We expect to hear on them sometime in June.Last week Kate and I found ourselves unexpectedly back in Phoenix as her brace was giving her foot much grief. In a rare moment of disappointment, Kate said she was sad she had to fight cancer and all that went along with that. "I wish I didn't wear a brace mom, that I could just put on flip flops again". "I probably wont be out of my brace until I'm 90". I smiled tearfully. As much as she works wholeheartedly, physical rehab after a neurological injury is hard, tedious and extremely slow to reward. And yet, she anticipated living until 90, that made me smile. I imagined her sitting in her flip flops at 90, beaming over her freshly painted toes.So we went and got her fitted for a new brace and waited the remaining days for it to come in. We spent some sweet, quiet time together. And pretended we were fashionably shopping for a new outfit rather than picking out a new pattern for an unwanted brace. She's a good sport, and was simply grateful she could walk again without decent amounts of pain. We snuck in an appointment to see her physiatrist, always hungry to hear her concerns, her encouragements, and anything new and innovative that might apply to our girl. She felt Kate's leg weakness was due more to extreme muscle weakness now and less neurologically related now. I had her repeat it, making sure she hadn't misspoken. No, she felt that Kate could recover most of the strength in her leg over time. But not without olympic like training. She also felt like we needed some things to assist in a faster recovery, since Olympic like training for a near third grader wasn't likely. She gave me a brochure detailing a stationary bike with electrodes that attach to the muscles we need to retrain. "Don't buy it, they are thousands and thousands of dollars" she said, "and I don't anticipate she will need it for the rest of her life. Find one. And work her hard on it." My heart sang. And I sent out a text before I left the building to hunt one down.Swimming, piano and the like are the best things to assist in her rehabilitation she would tell us. It so happens Kate is part fish. Or dolphin she prefers. She reminded us that growth will give us headaches and cause problems and set backs in her rehabilitation. And yet we will ferociously celebrate that growth as it comes, knowing even that is at risk. Kate's hand she was less quick to make predictions on. It seems the weakness in her hand is still more neurological in origin than her leg. So we continue to pray for its recovery and attempt to find useful activities to engage it in. I left very sober minded and equally as encouraged.Next Wednesday we find ourselves back in L.A. for Kate's 3 month MRI. This one will include her brain and spine. My racing heart has started. But we know God can heal the sick and equally comfort the broken hearted. We have seen both. We pray for the first, and attempt to trust him for either. Pray with us....
upcoming tests.... and prayers for restoration
Written Apr 9, 2013 3:17pmWe have done this battery of tests multiple times now in the course of the last nearly 4 years. Prior to her stem cell transplant, prior to the first dose of radiation, and then the second round of radiation, and then yearly after that. I really do have a deep disregard for them. They are the unwelcome reminder that we have to test yearly for the extent of damage, and to see if it is progessively worsening. There are unexpected moments of guilt that accompany too, knowing we willingly chose harsh treatments, having few to no other options. There have been days I have wept apologies to her, as I held her tight. And yet in a maturity cultivated by pain, she reminds me she knows we love her, and trusts us as a result. More tears come. And I am reminded so gently that Jesus must ache with our pain. Ours and yours. And the more I revel in His love the more I trust Him in the painful.As the yearly neuro-cognitive tests draw nearer for Kate I find unwanted emotions tend to resurface. I don't talk about this end of the testing much because, well, it feels private and personal to me. And I never want simply having the opportunity to share something publicly overtake what needs to stay private, especially for Kate.Yesterday a friend was reminding me how unusual Kate was, having just had her to her house to play. Her excitedness about the smallest of things and gratitude for most everything. As she jumped contentedly on their trampolene, she would again shout out thanks for having her over. It made me smile so. Somehow in the trenches she found a joy that permeated her pain. So she celebrates the small even while facing the monumental. All the meanwhile gratitude pouring from her lips. Oh I have much to learn. Sometimes even the unusual journey can be unexpectedly beautiful.So it's time again for these tests in Houston in a few weeks. I feel somewhat sick, and yet also surprisingly expectant. She has surpassed so many expectations that we continue to be hopeful that this will prove likewise. So we ask you to join us in specifically praying for the following~for the tests to be an accurate indicator not of decline and damage but of unusual healing and restoration~for the MRI of her brain and spine in May to show no areas of visible cancer, and no areas of concern with blood vessel damage~for increased strength~for continued joy