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Mackenzie was diagnosed at 15 months of age with Acute Lymphocytic Leukemia on January 16, 2004 after weeks of high fever of unknown origin. Her bone marrow responded well and at two and four weeks into treatment, both aspirations showed remission. Unfortunately, with leukemia, it is a long road, and even when remission occurs, a 2 1/2 - 3 year protocol of chemotherapy must be completed. The first year was rough, as Mackenzie endured many, many complications. In October 2004, she entered the "maintenance" phase of therapy and was doing well until April 18, 2005 when we received news that the leukemia was back. Mackenzie's relapse occured in her central nervous system and she enduring ten more months of intensive chemo and cranial/spinal radiation, followed by another year and a half of maintenance therapy. Her doctors told us they thought she had a 40% chance of beating this thing. It was a crushing, heart wrenching blow to our lives. But we didn't know the storm wasn't over. Five months into maintenance, Mack relapsed again on January 18, 2007. This time the cancer was back in her bone marrow and the doctors thought she had a 10 percent chance of surviving. We uprooted our family and left suddenly for Cincinnati Childrens Hospital where she was inpatient for over six months. Four months of intensive chemotherapy and finally an unrelated umbilical cord blood transplant on May 15, 2007. We continue to remind ourselves that life is not about numbers or statistics... it's not about someone's best guess at whether or not my child will live or how long she may live. Rather, it's all about a plan and a purpose that God has for our lives. And so we continue to place all of our hope in Him, trusting in His constant care. His faithfulness has been evident in the many ways He continues to provide for us on this long and exhausting journey. We praise God for Mack's life everyday and for the miracle of His healing hand. We are so grateful for all the changes that have occured in our own lives through this journey we have been on and have learned to appreciate the suffering. YOU are another example of His outstretched arms and we pray that you will be touched by Mackenzie's life and blessed through your love and support for our family!
P.U.S.H. & P.U.L.L. for Mackenzie!
Mackenzie's MySpace
We have been amazed by the way God has brought you all into our lives. A special tracking map of the world has been made for Mackenzie's Prayer Warriors so she can see how many lives she has touched and how near and far her prayers have come from. Please click the "Add yourself button" below and add your name, location, picture (if you want) and, most importantly, your message for Mack!!! The map defaults to the US, but the entire world is available for posting. We look forward to printing the information as a keepsake for Mackenzie. Someday, she will be amazed as we have been! Thanks for taking the time to let us know what part of the world you are supporting her from!
Mackenzie's Prayer Warriors
BuddyMapping.com - Create your own map. Click here!
DONATIONS MAY BE SENT DIRECTLY TO THE BANK WHICH HANDLES MACKENZIE'S MEDICAL FUNDS. THE ADDRESS IS:
WAUCONDA COMMUNITY BANK
HOPE FOR MACKENZIE
ATTN: CYNTHIA TYSLAND
495 WEST LIBERTY STREET
WAUCONDA, IL 60084
Journal
Tuesday, December 30, 2008 7:03 PM CST *******WED Dec 31st 5:20 PM UPDATE***** Good news from the cardiologist! Mack's stent is wide open and the blood is flowing without any resistance! Her heart function is excellent and overall he was very pleased. Her EKG continues to show some small abnormalities (mostly just a bunch of PVC's) but she has complained about periods of her "heart going fast" and so she'll have an event monitor this month to try and catch one of these episodes. If there are no concerns from the results of the event monitor, we will begin seeing the cardiologist annually. If there are concerns about any rhythm issues... we'll go from there. The endocrine labs and Igg level from yesterday were still not back yet, but her kidney and liver function labs looked great. We should hear the results of the remainder of the labs next week. We will also get the results of the DEXA scan at that time. As we were leaving the hospital today, Mack said, "This was the best day of my life." I asked "why" and she said, "because I didn't have to get ANY pokes!" Please continue to pray for healing, especially of Mackenzie's brain which could not have humanly escaped a major hit from all the chemo/radiation BUT we know that God is fully capable of protecting her brain, and/or healing any damage that may have occured because of her treatment. I'll update again next week when I have the rest of the results from this weeks tests. We will be back in Cinci on Jan 21st and 22nd for many more follow up appointments and testing. Also, I'll keep you posted on my sinus surgery Jan 13th. I have a deviated septum which they will fix and something in the left sinus cavity that they says looks like a "bone chip" or "tooth" from the CT scans. My doctor brought his partners in to look at the films because it's very "odd". Apparently it appears like a tooth surrounded by either tissue or fluid, but I've never had any sort of injury to my face and I'm not missing any teeth. Yes, Steve likes to remind me that I'm just a "freak of nature". Steve finds great delight in joking about "the tooth" and frequently asks questions like "how do you floss up there?" On a serious note, please pray that they are able to identify this mystery foreign body and resolve the problem by removing it without any difficulty or complication. Also prayers for wisdom and guidance for my doctor as many decisions will not be made unitl he is actually in the sinus cavity. And prayers for a quick recovery as the following week we are scheduled to be in Cinci with Mack. Thanks again for your constant support. I know it seems like its always something in our family and we are grateful that you have chosed to press on with us!!!! Actually, I can't imagine life without you all! Happy New Year!
Sending our love and much love, Amy*******************************
Just a quick update from Cinci... Mack did awesome today despite a difficult IV stick. It took so long to get her IV started and get her labs drawn that she missed her hearing screen this afternoon, but we rescheduled it for January. Most of the labs were not back yet, but her CBC looked good and we stand in awe of the work God has done in Mack's life. I should hear the results of the remaining labs tomorrow. After her tests/infusions, we met with the neuropsychologist. She was extremely knowledgable and we feel so fortunate to be connected to such a great program here in Cincinnati. She will have the extensive testing done in January and we will get all the results in February. It will be so interesting to see how much her treatment affected her brain. Praying for continued healing and another miracle! They expect signifcant delays in memory, retreival problems and difficulty with math concepts, along with concentration issues and visual/spacial concept abnormalitites. It sounds like they will track and follow her progress much more frequently than I thought and it will be a long process throughout her school years.
Tomorrow we go back for Mack's DEXA scan which will show how well her bones held up through treatment. I'm hoping all looks well, but we'll see if there are any signs of osteoporosis. She will also have her echo and we'll meet with the cardiologist. If her echo shows that the stent is being compressed, or there is any occlusion in her SVC she will be scheduled for another cardiac cath. If the echo looks good, I'm guessing we won't have to do anything for another six months. Keep praying!
So thats the latest. I'll update again tomorrow afternoon when I have more info. We are staying in Cinci for new years eve and heading home on the 1st. Mack's the cannonball queen of the pool here at the Radisson. And she's quite impressed with herself after learning to float on her back! I keep having flashbacks of her sitting on the pool stairs when we first got to cinci... with her "tubies" taped up so they didn't get wet while she splashed a little... desperately wishing she could go in the pool. Now I see a carefree little one, jumping in the pool without any reserve and loving every minute of it... PRAISE GOD! We are grateful for every moment!
Much love,
Amy
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Hospital Information: CINCINNATI CHILDRENS HOSPITAL
3333 Burnett Avenue
Cincinnati, OH 45229
513-636-4200
Links: www.caringbridge.org/visit/awesomeali Remembering Awesome Ali
www.jenessabyers.com Remembering Boey
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