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Saturday, November 8, 2008 8:53 PM CST
Just got in the door from Cincinnati. Mack had a good check up. Labs were good, IV was started with 1 stick, infusion was uneventful and we had a great time. I had the opportunity to share our gratitude in a speech given to donors of the hospital. It was amazing to reflect back on all the hospital has done for us. Mack got to play with her best friend Caroline... swimming, shopping and dining out, does it get any better than that? Of course, our shopping extravaganza included a trip to build-a-bear!
Next month (Dec 5th) Mackenzie will have dental surgery at the hospital. I guess the work that needs to be done is extensive and therefore it will be done under general anesthesia in the main OR. They said it would take about 3 hours to put some crowns on, extract teeth, extensive cleaning and xrays. After her surgery, she will get her infusion of IVIG again.
I'm exhausted from the trip... heading to bed. Thanks for continuing to pray for Mack and our family.
Much love,
Amy
Wednesday, October 29, 2008 6:18 PM CDT
I sure miss hearing from you guys on a regular basis, but I'm thrilled that our status quo updates imply that we are busy "living"! Mack continues to feel great outside of cold symptoms here and there. Her IEP meeting last week went well. The school did minimal testing as Mack will have her comprehensive neuropsych testing done in Cincinnati in December or January. The school testing shows Mack on the very low end of average which is truly miraculous. We understand that those percentages will most likely fall as concepts get harder, but then again... we aren't ones to put our faith in numbers and percentages, right?!?! We ask for continued prayers for healing of Mack's brain which has been "damaged" by the chemo/radiation. Specific prayers for healing of the memory part of her brain!!! We truly believe "all things are possible!" She absolutely loves going to school and the school has been so good to her. She will continue to receive special education along with speech therapy, occupational therapy and physical therapy. We are so grateful for the school's willingness to help in being proactive in Mackenzie's education! We are heading back to Cinci next week for another infusion of IVIG and check up on Nov. 7th. Everytime I blink my eye, another month has gone by.
Work has been super busy. I am involved in running a "Biggest Loser" contest and we have 74 staff members going for the title! I'm passionate about teaching healthy lifestyle changes, so it has been really fun. The Daily Herald will be covering our story and I will keep you posted when that will run. Our goal is to lose 700 pounds as a group in the next 13 weeks. Wow, huh?!?
The rest of the girls and Steve are doing well. Taylor just finished her basketball season, Lindsays in Drama Club, Student Council and Yearbook Club. Steve will soon be starting his basketball season and I am already counting the days until it is over! Lindsay will see the electrophysiologist at the end of November. Please continue to pray for stability of her heart rhythm.
Thanks for continuing to check in on us. We love you all more than you know and are SO grateful for your faithful support! We have been amazingly blessed to walk with you hand in hand... in the valley AND on the mountain top!!! Praise God!
Many hugs and much love,
Amy
PS I'll write again after Mack's appointment next Friday.
Saturday, October 4, 2008 9:39 AM CDT
For some reason, this month's trip to Cincinnati was very profound for me. Maybe because the fevers Mack has experienced over the past several weeks brought up alot of baggage from the valleys of the past or because I'm feeling sentimental as she is turning 6 this Tuesday (Oct 7th). But I find myself praising God in a new way. His grace is sufficient and consistent and it continues to amaze me! The IV team started Mack's IV with one poke... unless you have seen your child as a pin cushion, you have NO IDEA and will never fully appreciate how much of a gift that is! Her IVIG infusion was uneventful, without reaction. Mackenzie's labs were good and her doctors were pleased after looking at her cells under the microscope. We reflected on the miracle of Macks healing and Gods amazing grace that sustained her through the fire, leaving her without even the scent of smoke. It was like watching a film in my mind of the last four years and the "shock and awe" factor of what God had done in Mackenzie's life and for our family, hit home hard. How do you say "thank you" to a family who donated life saving cells over 11 1/2 years ago, to nurses who carefully collected those cells, to scientists who delicately froze and stored them. To doctors who knowledgably chose them, to technicians who unthawed and intricately washed them, to the team who delivered and adminstered them to our precious little girl who's broken body was failing... and most importantly to a GREAT God who oversaw it all, who brought it all together as we desperately sought His plan, who's grace and mercy carried us during dark days and who's faithful love never waivered. There just aren't words to express gratitude on that level. Its so far beyond our human comprehension, but we have been amazingly blessed to view a fraction of God's blueprint for our lives. And THAT is where we continue striving to align our lives with, and where we place all of our hope for the future!
Our next appointment is scheduled for Nov. 7th. Please continue to pray for protection for Mack as we enter cold/flu season. Praying that her new cells will learn how to fight infection and maintain memory to fight germs in the future. Also prayers for healing of her brain from all the detramental effects of radiation and chemotherapy. Her IEP meeting at school is set for Oct. 22nd and we are still waiting to hear when her neuropsych eval and testing will be done in Cincinnati.
Thanks again for always "being there" for our family and for covering us in prayer. Words continue to fall short when we attempt to express our appreciation!
Love you all,
Amy
PS I finally added new picture to the photo album, but I forgot to resize them, so they are very large. Sorry.
Thursday, September 25, 2008 6:38 PM CDT
Just a quick note... Mack had another fever over the weekend and started with another cold. Went to the pediatrician and started an antibiotic yesterday for a sinus infection. She seems to be feeling better already today. Please continue to pray for protection over Mack as her body tries to fight all the bugs at school. Heading to Cinci next week, her appt is on Friday. She still loves school and works hard. Her IEP meeting will be next month. The school has been wonderful in working with Mack and giving her the support she needs.
The weeks keep flying by without much down time... work is insanely busy, and the girls are involved in all different activities. I'm absolutely dreading basketball season. Not sure how I can do it all when Steve starts coaching again. Brutal!
Gotta run, but just wanted you to know that we are grateful for your love and support! Keep praying!
Love and hugs,
Amy
Saturday, September 13, 2008 9:18 AM CDT
Things here have been relatively calm. Mack is still fighting a cold, but no fevers since last weekend. Praise the Lord! She still seems a little "run down" and tired, but her schedule is busy and it could partially be from the early mornings and long days she has.
Lexie had a fever toward the end of the week and now has similar cold symptoms. Guess its going around, school is a breading ground for germs!
We had a domain meeting at Mack's school to see what testing needs to be done and the teachers said she is doing extremely well. Miraculously, she actually tested above average cognitively and they said she was more prepared for kindergarten than most of the children in the class. Without a day of classroom preschool and being extremely sick for 4 out of the 5 years of her life, this is a testimony to our great God and the benefits of early intervention. All of Mackenzie's therapists have been so invested in her life and their efforts have made an incredible impact on her. We are so grateful for all the time and energy (and love) they have given Mack! Although we are thrilled Mack is doing well, we also realize that most of the material at this point is review, and she will most likely have difficulty as the concepts get harder. The school is going to do minimal memory and language testing because Mack will have the entire comprehensive and extensive Neuropsych Eval at Cincinnati Childrens sometime in the near future. This will help pinpoint the area's of learning that will be most difficult for Mack.
Not much else happening here. Steve and I have both been extremely busy with work. I'm starting to help out with Fellowship of Christian Athletes at my school and I'm excited to see how God uses FCA. Looking forward to working with students who have a heart for Christ.
Not much else for now. Scheduled to go back to Cincinnati on October 3rd for labs and monthly IVIG. Please continue to pray for protection for Mack and our entire family. Much love,
Amy
Saturday, September 6, 2008 9:58 AM CDT
Steve and Mack made it back from Cincinnati around midnight last night. Mack had a pretty good check up, but unfortunately, her Igg levels have continued to drop. Her immunologist said he was not surprised or alarmed... he expects kids to need IVIG replacement for about 2 years after transplant and especially those who have had an umbilical cord blood transplants because those cells have a lot of learning to do. The rest of Mack's labs looked great, but since she needs IVIG monthly to boost her immune system, we will be back and forth to Cinci every month again.
Although I knew Mack's teeth were bad... I didn't think it would be as extensive as it is. She will have to go back to the OR at the hospital for decay removal, teeth removal, xrays, cleaning and possibly the beginning of reconstructive cosmetic dentistry. We won't know the full extent of what she needs until she is in the OR. We are trying to schedule this at the end of December with the rest of the tests and procedures she will have. Along with the dental surgery, she will see endocrinology again and have a stim test to see how well her body is producing its natural steriod, she will have a bone scan to see how much the steriods have affected her bones and whether or not she has any osteoporosis. She will also see cardiology and have a follow up echocardiogram to look at the stent and make sure it is not closing off again. She will see oncology and get her IVIG, etc. Shes still on a waiting list to have her neuropsych eval, but I'm not sure she will have that before the end of the year.
We had a scare last night after Steve and Mack got home... Mackenzie was shivering and spiked a 103 degree temp. I think I saw the last four years flash before me and relived every emotion of the leukemia diagnosis, relapses and complications in a matter of minutes. It was a sick feeling and I'm still trying to shake it today! She started with cold symptoms yesterday morning and has a runny nose and cough today. So far, no temp and she's acting fine. It's very strange... my gut feeling is that her body had some reaction to the IVIG although its weird that it happened 6 hours after the infusion. I've seen Mack react to IVIG in the past and this is exactly how it presents itself although it usually occurs during the infusion. After tylenol, benedryl and stess doses of steriods, the fever broke. It also could be a viral thing, but I would have expected to see the temp persist for a day or so if it was viral. Of course the dreaded "R" word is always looming, even though there is no indication in her lab work. We've had the carpet ripped out from under our feet so many times that we're gun shy. But I'm laying that all down at the foot of the cross because I simply can't carry that one... it is too big and too heavy. I'm continuing to claim the words that God gave me... "the healing is done" and trusting Him to care for Mack believing whole-heartedly that His plan is perfect and I can rest in that. I don't need to know what tomorrow will bring because I can rest in Him today. He's got tomorrow covered and will give us whatever we need to continue on. Please continue to pray for healing of Mackenzie's immune system and protection of her bone marrow. I find myself on my knees again praying that God would filter each of Mack's cells through His mighty hands and be merciful, gracious and loving to her, caring for her tenderly as He always has. He is good... always good!
So, if all goes as expected, Mack will return to Cincinnati October 3rd for her IVIG, and then again on Nov. 7th. Praying that her body can fight this cold without any difficulty and that God will continue to give Steve and I peace and courage. Praising Him for all the prayers He has answered and the many blessings He has given us. We are so grateful for all He has done!!! More next week. Love you all, Amy
Wednesday, September 3, 2008 7:27 PM CDT
Ok, I know it has been entirely too long since I've written, my job has completely consumed my life with craziness! Lindsay's cardiac eval last week went well. The cardiologist was pleased with her echo and ekg, but she needs to see the electrophysiologist for persistent break through arrythymias. We can breathe easy for another six months, no surgery on the horizon... yet. I'm thinking about taking Linds to Cincinnati to have an eval sometime when I'm down there with Mack. Speaking of Mack... she's doing great. She loves her teachers and loves school. Steve is taking her to Cinci tomorrow for her check up on Friday. It will be the first time that I'm not with her for a check up and I'm struggling with that, but it was too hard for me to take time off of work.... I'm so burried in stuff to do. Please pray for good labs and specifically for good Igg levels on Friday! Her face is becoming less puffy since having the stent placed in her heart and her headaches have nearly resolved. She was standing in the mirrow rubbing her hands on her belly and said, "Gee... I'm wreawy thinnin' out!" I was cracking up. She has taken a serious liking to the Jonas Brothers which is hard to avoid when you have four older sisters. Kali has convinced her to ditch Ace and marry the little Jonas... Frankie. And they are all working her like a 9 to 5 to use her Make a Wish to hang out with the Jo Bros. Hopefully, this too shall pass! haha.
Lindsay has joined drama club at school and Taylor is playing basketball. I think Steve is more excited for Taylor than she is! Its been amazing to think about things other than medical stuff!!! We are enjoying life! I'll let you know how things go on Friday with Mack's appointments. Thanks for keeping us in your prayers and continuing to love us the way you do!!!! Many hugs and much love, Amy
Thursday, August 21, 2008 7:52 PM CDT
Well... it's been a HUGE week for us. Mack started kindergarten and LOVES it! She's been waiting for so long to go to school and play with other kids. I wondered if we'd ever see the day, and by the grace of God, we've had the most amazing gift given to us in seeing her do "normal" things. She takes such pride in carrying her backback and riding the bus, it cracks me up. We all love to hear her stories even though she never remembers much about school. Her memory has definitely been impacted. We continue to pray for healing of her brain from all the side effects of the treatment she has had.
Lets see... other news... Lindsay had some strange arrhythmia last night, different than anything she had ever experienced before. It scared her so much that she asked to sleep with the monitor on and the alarms set. I think she was worried she might die in the night. She has her cardiac eval next Thursday the 29th. Please pray for a good check up and no surgery to be needed!!! We should have results that night and I will let you know. Then the following week Mack goes back to Cinci (Friday the 5th) and we are on our knees praying for good IGG levels so she won't need monthly infusions of IVIG.
This weekend I am taking the girls and their friends to see the Jonas Brothers in concert for Kali's birthday. She's basically freaking out because she is in love with Joe Jonas. No she wouldn't be embarressed that I'm sharing that news, she readily shares that info with anyone and everyone who will listen. And anyone who knows Kali... KNOWS how she feels about the Jo Bros!
Well, that's about all for now. Please continue to pray for health and healing for Mackenzie and Lindsay. I'll let you know how these next appointments go.
Love you all,
Amy
Friday, August 15, 2008 9:14 PM CDT
To view a copy of the magazine and article written about our journey:
Click here, then click on the Magazine Sixteen:Nine. You can flip through the pages of the magazine online. Mack's article is titled "Meeting God in the Valley" starting on page 20.
God is good! Much love, Amy
Wednesday, August 13, 2008 12:52 AM CDT
*********THURSDAY AUGUST 14TH 12:20 PM UPDATE************ DISCHARGED!!!! MACK HAD A GOOD NIGHT LAST NIGHT ALTHOUGH I DIDN'T GET MUCH SLEEP BECAUSE HER MONITORS WERE GOING OFF ALL NIGHT. I LAID ON THAT HARD HOSPITAL "COT" ALL NIGHT WONDERING HOW WE DID IT FOR 6 1/2 MONTHS!!!!! ONLY BY GOD'S GRACE, I KNOW THAT FOR SURE! MACK'S ECHO THIS MORNING LOOKED GOOD. SHE WILL SEE CARDIOLOGY AT THE END OF DECEMBER AND HAVE A REPEAT CARDIAC CATH SOMETIME AFTER THAT. PLEASE CONTINUE TO PRAY FOR THE STENT TO REMAIN WIDE OPEN. SHE STARTED TAKING ASPIRIN TODAY WHICH SHE WILL NOW BE ON FOR THE REST OF HER LIFE... NOT A BIG DEAL. HER BMT DOCS DECIDED TO HOLD OFF ON GIVING HER THE IVIG AND SEE IF HER BODY CAN START PRODUCING ON ITS OWN. SHE RETURNS TO CINCI IN 3 WEEKS FOR HER ONCOLOGY APPT, IF HER IGG LEVEL IS LOWER AT THAT TIME, SHE WILL START THE MONTHLY INFUSIONS OF IVIG AGAIN. PLEASE PRAY THAT HER BODY WOULD BEGIN PRODUCING ITS OWN IGG AND THAT REPLACEMENT THERAPY WOULD NOT BE NEEDED. MACK IS SUPER EXCITED TO SEE HER FRIEND CAROLINE THIS AFTERNOON, ITS ALL SHE'S TALKED ABOUT FOR THE PAST 24 HOURS. TOMORROW SHE'LL BE WORKING WITH A PHOTOGRAPHER TO DO SOME PUBLIC RELATIONS WORK FOR THE HOSPITAL AND THEN WE WILL HEAD BACK HOME. THANK YOU SO MUCH FOR EVERYTHING YOU DO FOR OUR FAMILY AND YOUR AMAZING WILLINGNESS TO KEEP CARRYING OUR BURDENS WITH US. I WROTE AN ARTICLE FOR A MAGAZINE... OUR STORY OF FAITH AND HEALING. I JUST RECEIVED THE EDITED COPY OF THE ARTICLE AND WILL POST IT HERE TOMORROW. KEEPING OUR EYES FIXED ON GOD AND CONTINUING TO LIVE IN THE MOMENT. THANKS FOR MEETING US IN THIS MOMENT! MUCH LOVE, AMY************
*******5pm update****** Praising God for a successful stent placement! Mack is done and back to her room laying flat on her back for the next 4 hours. The procedure went well... apparently the blockage was so bad that her bloodflow had reversed itself and re-routed. The nurse told us after Dr. Hirsch placed the stent and took pictures, it was so remarkable he exclaimed, "she's GOT to feel better!!" We are still hopeful to be discharged tomorrow providing that our night is uneventful. She will have a chest xray a little later tonight and an echocardiogram in the morning. The narrowing in the vessel was so tight that the stent is under a lot of pressure and therefore she may need to have another one placed in 4 to 6 months. Time will tell. Also, her Igg level fell from 630 last month to 504 now. 600 is supposed to be her cut off, so technically she should get an infusion of IVIG but the doctors are discussing whether or not they should wait and see what her body does. Mack comes back to Cinci in 3 weeks for an oncology appointment and some dental work so they may just repeat it then and see where she's at. Please continue to pray for healing and stability of Mack's heart. Also, that her heart would relax more and receive the blood with ease. It is a little stiff and they're not sure if thats because of all the treatment she has had or because of the way it was receiving blood flow. It may correct itself if its not from the chemo/radiation. Also prayers for a stable heart beat, the stent hangs into her heart and can be irritating, so we are praying that no more scar tissue builds up and that her heart rhythm remains stable. Continued prayers for protection from all infections and good blood counts. Her CBC from yesterday looked great. Words can't express our gratitude for all your prayers and concern. Pray for an uneventful evening/night and rest of us all. I'll update again in the morning unless there are unexpected prayer requests during the night. Love you all, Amy **************************************************
As always, I continue to be impressed with the hospital here in Cincinnati. Mack checked into her room this morning around 11am after a trip to Target to load up on snacks and toys... like she doesn't have enough! It was a good distraction as she was feeling very anxious about the procedure today. Once here, made herself right at home. I was able to go into the cath lab with Mack until she was asleep so she wasn't scared. They will put her IV in while she is out so she won't have any pain or anxiety related to the pokes. We spoke at length with Dr. Hirsch this morning and were impressed with his knowledge base. He thinks he will need to balloon several vessels in her neck, but only stent the vessel that enters her heart. Specific prayers right now for his catheter to be able to pass through the blockage because if he can't get it through, he can't place the stent and therefore she would require open heart surgery. Please pray for the catheter to pass with ease, from protection from all arrythmia's or irregular heart beats and protection of her vessels... that God would strengthen them and protect them from rupturing. The procedure is expected to be 2-4 hours and they will update us every hour. No news from me is always good news. The computer is not working in our room and so its a little harder for me to update. I will keep you posted as often as I get word and can get to the computer. So so thankful for your incredible support. More in an hour. Much love, Amy
Tuesday, August 12, 2008 6:23 PM CDT
We made it to Cinci! Mack and I slept a good portion of the way since we left at 4:30am, so it was a fast trip for us. Steve has hit the wall. Mack's appointment this afternoon took much longer than we expected. She had an echocardiogram, ekg, chest xray, exam and lab work. All was well until it came time to draw labs. I think Mack is the hardest stick I've ever seen and its extrememly difficult to draw blood since she's had so many IVs and been poked so many times. It took 4 pokes this time (Jane you can relate) and they finally ended up drawing the blood from a vein in her foot. It was very traumatic for us all. Sometimes the little things are harder than the big things. It hurts to see her poked and prodded so much. She's such a trooper and she bounces back so fast. After it was all done, she was all smiles asking to go to Build A Bear (guess she hasn't forgot the routine) and saying, "Thank you Jesus, Thank you God". Since it took so long to draw the labs, we won't have any results until tomorrow morning. We went out for pizza for dinner and now I'm sitting by the pool at our apartment while Mack is in the hot tub next to me. Heading back to be admitted tomorrow at 11am. I was hoping she'd have her IV put in after she was out in the cath lab, but it sounds like she'll get settled in her room, get an IV and then go to the cath lab. Please pray that someone with unbelieveably good skills will be able to start Mack's IV with just one poke. Continued prayers that Dr. Hirsch will be able to pass the catheter into Mack's heart and open the blockage with a stent. Praying for God's hand of protection to clear away any debris in Mack's veins from scar tissue from all the central lines she's had in and praying specifically for protection from all blood clots. Asking God to be present in the cath lab and tenderly care for Mack. Pleading for more mercy and more grace. Guidance and wisdom for Dr. Hirsch and also a steady hand and clear thoughts. Praying for stability for Mackenzie throughout the procedure and after, so that we will be able to go home as planned.
I will update as often as I hear word tomorrow. The procedure is scheduled for 1pm and will take 2-4 hours. They are supposed to come out at least every hour and give us an update. Thanks for praying us through this one because I feel so beat up its hard to keep going. I love you all and thank you for your words of encouragement, your thoughts and prayers. Praising God for the blessing you have been in our lives. More tomorrow.
Much love,
Amy
Monday, August 11, 2008 4:55 PM CDT
Packing our stuff and getting ready to head out to Cincinnati. Mackenzie has pre-op testing tomorrow afternoon and then will be admitted on Wednesday morning. Her cardiac cath is scheduled for 1pm on Wednesday. Please pray for protection over Mack and peace for us all. Each hurdle feels harder for me to get over, but I'm doing the best I can to keep running. Clinging to His promises and looking to Him for strength, provision, mercy and grace. Specific prayers for angels to stand guard over Mack, that the cath would be successful in opening the blockage in her heart, that NO surgery would be required, for God to guide Dr. Hirsch's hand and give him specific wisdom and discernment during the procedure. Praying that Mack would be discharged on Thursday and that she would be able to start school next week as planned. She is so excited about school she can hardly wait. It's been a good distraction from her fears. I will update again tomorrow when we know more and also throughout the day on Wednesday. Thanks for your amazing support for our family and your prayers that have carried us through more than I could have imagined!
Much love,
Amy
Saturday, July 26, 2008 8:38 AM CDT
*************Tuesday July 29th update*********** Just thought I'd let you know that Mackenzie's cardiac cath has been scheduled for August 13th. Please continue to pray for protection over Mack, and wisdom and guidance for her doctors. I'll write again soon. *********************
Hey guys... I'm sorry it has been so long since my last update. We are finally home after a wonderful family vacation together. Mackenzie saw one of Lindsay's cardiologists here in Chicago this past Tuesday and was scheduled for an MRA this week, but it was determined through echo that the blockage in her heart is significant enough that it will need to be opened, so the MRA has been cancelled this week. We have decided to have the procedure done in Cincinnati and are waiting for the schedulers to give us a date which we expected to be sometime in August. The plan is to place a stent through cardiac catheterization to open the blockage. Unfortunately, the blockage occurs right where the blood flow enters the heart and therefore the stent will need to "hang" into the right atrium of her heart. They will also investigate the vessels in her neck as she has a history of blood clots which will be one of the biggest risks to this procedure. Dr. Hirsch is anticipating having to balloon or stent other vessels from all the trauma they've been through with four years of central line placements. Please pray for protection over Mackenzie, for her vessels to be open and free of clots, for the doctor to have easy access and no difficulty in placing the stent. Also, please pray for the timing of the procedure, asking God to open up a place in the schedule as soon as possible so that Mack can be done before school starts and to resolve this problem asap as the doctors have all expressed a great level of "concern" about the high pressures in the veins in her head, neck and chest that this blockage is creating. Praying for a steady hand, wisdom, discernment, good judgement and skills for Dr. Hirsch. I'm still feeling "burned out" and the thought of another hospital stay and more "critical" procedures is weighing heavy on me. This time I carry Mack to the foot of the cross, lay her down and then lay myself down next to her... I'm exhausted and drained. I can't do this alone and therefore I am relying on God to carry me, hold me, love me and comfort me as He carry's us through another road block. He is my refuge and strength as I am completely depleted. Once again, I have to leave our lives in an open hand before God and say, "Above ALL things Lord, Your Will be done". It's out of my control and worrying about it won't change a thing. But letting go and trusting God, being completely dependant on Him, is the only way I find peace because His faithfulness has never waivered and I believe His plan is perfect. My willingness to accept His Will, above my own, does not hinder my plea as I pour out my heart and ask for God's divine intervention to protect our sweet Mack. Pleading with Him to open the vessel with His powerful hand or use man's hand to guide the catheter and place the stent without any complications is my heart's cry. Please join me in calling on the Lord and trusting in His care for Mack. I will let you know as soon as we have a date scheduled.
Other than that, we've been busy doing our "spring cleaning"... better late than never, right? Finishing "Extreme Room Makeovers" in all the kids rooms and gearing up for the school year. I start back to work August 5th!!! Lindsay has her cardiology work up scheduled in early September and I'll keep you posted as that approaches. Praying for her homograph to remain WIDE open and that surgery would not be needed at this time. I am so grateful to my friend Heidi who told me about Caringbridge almost five years ago when Mack was diagnosed. It has been so therapeutic and comforting for me to come here and share our needs and prayer requests with all of you and to celebrate the many victories and simple joys of life that many take granted. You have become family to us and we love you all dearly. Thank you for continuing on this journey with us and for your persistent prayers for Mackenzie. "Doing" life together is far more rewarding and fulfilling than the emptiness and strife of trying to "do" it alone. Opening our hearts to God and eachother has made us vulnerable, but ultimately has empowered us in more ways than we will probably ever know in this lifetime. We are so grateful for the gift of this Caringbride family!!!
Much love to you all,
Amy
Sunday, July 13, 2008 7:20 PM CDT
Just wanted to let you know that we've been having a great time together. After our trip to Cincinnati, we spent two weeks at the cabin in northern Wisconsin with family and friends. Mack rode a horse for the first time in her life and is now convinced that she needs her own. After trying to deter her thoughts on the matter, she was quick to remind me that she still has a "Make a Wish" coming her way. Radiation may have affected some areas of her brain, but NOT all of it! Mack was so happy jumping off the dock, tubing, dragging through the water on the boom of the boat, feeding black bear bottles of juice, petting deer, holding bunnies, fishing (she's got a mean cast even though we didn't trust her with a hook yet), four-wheelin and so many other "life experiences" for her OUTSIDE THE HOSPITAL SETTING! Emotions always hit me at the strangest time. I walked into the "kids room" at the cabin and saw everyone's name hanging on the wall that they had made out of sticks and "nature" stuff over the previous years and Mack's name was missing. I remember when she relapsed one of my "flash forward... I'll never see her do...." thoughts was that she'd never get her name on the wall at the cottage. I am happy to report through tears of joy that Mack made her name plaque and proudly hung it on the wall at the cabin. Everything seemed "complete". I have so many pictures to share with you guys, but our internet connection is slow, so I will try to figure out how you could view pics through a different link. I finally heard from Mackenzie's cardiologist in Cincinnati and they would like Mack to come back to have the blockage in her heart opened by placing a stent through cardiac catheterization. We are going to cut our vacation a few days short so we can get home and take her to see Lindsay's cardiologist for some more imaging and a second opinion. It seems more likely that this will have to be addressed in the very near future. Please continue to pray for wisdom for all her doctors and protection of Mack's heart. Also, asking God to open the blockage with His almighty powerful, healing hand so she would not have to endure more invasive procedures. I'm hoping to schedule her MRA and echo the week of July 22nd, I will let you know as soon as I have a date. We are currently in Minnesota staying with Steve's parents. Heading over to "Auntie's" house tomorrow as the girls have bardered with Steve's sister for haircuts and highlights. I will be getting a crash course in "foils" so I don't go broke at the hair salon over the next ten years!!!! And even Mack insists on getting some highlights... she is SOOOO proud of that wirey, wild, hair of hers!!!! Not to mention she wants to do EVERYTHING her sisters do! I'm flying out of Minneapolis on Wednesday to San Diego to spend 5 days in La Jolla for a girls getaway. As excited as I am to get away... I'm anxious to get Mack's imaging studies done and get life organized at home before returning to work. I return to MN on Sunday and we'll all drive home together on Tuesday.
Thanks for continuing to pray for health and healing for our family. We have been having a great time together and cherish the memories we are making. Life has changed so much as we appreciate and value even the smallest things and all of our time together. I hope we never lose that perspective. I'll try to update again next week after I return from California. Much love to you all, Amy
Saturday, June 28, 2008 8:04 AM CDT
Hey guys! We had a wonderful week in Cincinnati in between many doctor appointments and specialists. Mack and the girls went to Kings Island amusement park, a water park, the zoo, several parks, and swimming everyday. The weather was beautiful and it finally feels like summer! All in all, Mackenzie's check ups were good and the doctors are pleased with how things are going. The endocrinologist said that Mack has had so much radiation to her head that she will treat her like a brain tumor patient. She will have "adrenal insufficiency" for a couple years and therefore once she is off the steroids in December, we will need to give her oral supplements or injections of steroids whenever she is acutely ill. These "stress doses" are very important because if her body cannot produce its natural steroid under stress and we don't replace it, the situation becomes quickly life threatening. All of Mack's lab work looked good, her blood counts were great, her Igg level was 639. If it falls below 600, she will get the infusion of IVIG to help boost her immune system. Her visits have moved to every other month now which is amazing. BUT, we may need to go back before then because the blockage in Mackenzie's heart that the doctors have been following for several years now looks to be significantly worse on echocardiogram. I talked with Lindsays doctor here and they want Mack to have another MRA and echo done here so they can evaluate the situation. As usual, this is not a common problem that they see so there are many different opinions on the table. Please pray for wisdom and guidance and direction as we navigate these decisions. It doesn't appear to be anything that needs to be addressed immediately, so looks like end of July or beginning of August when we return from our vacation. I will hear Cincinnati's recommendation next week and that could change things, but we are hoping to continue on our summer adventure as planned. Also, Mack started with a cough this week, crazy how something so simple like a cough can raise so much alarm with a fragile immune system. Please pray for protection over Mackenzie (and Lindsay) and all of us while we travel. I'll update again next week when I hear back from the doctors and I'll post some pictures too. We love you all so much and want you to know how grateful we are that you continue to hold us up in prayer.
Much love,
Amy
Monday, June 9, 2008 7:50 AM CDT
Finally got word on Mack's immune studies and they were significantly better than the last time they checked. Most numbers were within normal and the few that weren't were about 90 percent of norm! I was actually at Target with Mackenzie when we got the call and I told her, she didn't need her mask anymore. She immediately ripped it off her face and crumpled it up in a ball while stating, "FINALLY!" It's a little scary seeing her out and about without her mask, guess we became somewhat dependant on the protection it provided. They are also thinking about discontinuing two of the medications she is taking prophalactically to prevent bacterial and fungal infections. She has about six more months of the steroid taper and then she will be off all medications. Her Igg level was good and so she did not receive IVIG this month. They will continue to watch that closely and if it trends down, they will restart the IVIG, but so far so good. Please continue to pray for protection for Mack and healing of any damage that has been done to her body from this long process of chemo and radiation and transplant.
We are getting ready to head out of town for about six weeks.... heading back to Cincinnati the last week of June for 6 days. Mackenzie will see most of the specialists she needs to follow up with during that week. From there we are going to northern Wisconsin for two weeks, then over to Minnesota for two weeks. I'll be flying out of MN to California for 5 days while Steve and the girls stay in MN. Then back down to Cincinnati for Macks appointment at the end of July and from there we are hoping to get down to Nashville and Memphis only to return in time to start back to work. It will go by so quickly! I'll be in touch and hopefully be able to post some pictures of Mack doing normal kid stuff!
Thanks again for your continued love and support. We are so grateful to have you walking by our side! It means more than you know! Much love, Amy
Sunday, June 1, 2008 8:05 PM CDT
We had a great trip to Cincinnati... so good, that it was hard to come home!!! I'm still feeling led to move south, but I haven't been able to convince Steve. Mack's counts were good, but we are still waiting on the immune studies which should be back at the end of the week. Dr. Mike was super excited to see Mack and thrilled to be discussing ways to promote health vs. ways to battle disease. We'll return at the end of June and probably stay for a week as Mack will see the Endocrinologist, Neuropsychologist, Cardiologist, Opthamologist, Oncologist, possibly a dentist and school interventialist. The reality of late effects from the chemo/radiation and bone marrow transplant are first and foremost on everyone's brain now. Mack definitely has developmental delays although she continues to progress. It is apparent that she will have some learning disabilites along with short term memory issues, but time will tell the severity. She's happy and thriving and to us, that is the most important thing, but we know that these things can become very frustrating down the road for her and we want to make sure she has all things in place to tap into resources to help her cope. We are extremely blessed to be connected to Cincinnati Childrens who's approach to care is comprehensive and thorough. It is such an outstanding hospital, and I continue to be amazed and impressed by their superior care.
Not much else going on here. I'm wrapping things up at work for the summer while Steve and the girls have another two weeks of school. I will let you know as soon as I hear results from Mack's tests at the end of the week.
Much love,
Amy
Wednesday, May 28, 2008 6:11 PM CDT
Heading to Cincinnati tomorrow, I can hardly believe another month has gone by. Work has been insanely busy, but I love it. I'm so attached to all the kids, I need to find my boundaries before I burn out. I'll be off for the summer starting next week and am looking forward to summer travels. We are travelling for five or six weeks, but I'll be in touch and keep you posted.
Mack is having her immune studies done on Friday and we are praying they are good enough that she will no longer need her mask when she is out and about. She is also hoping to be able to swim REALLY soon. It has been several years since she's been in water other than the bath tub, and she is dying to do some serious cannonballs!!! She's super excited to have her first sleepover with her best friend in Cincinnati and I'm looking forward to a night out with friends. Crazy enough.. some of the worst days of our lives were the best days. I miss all of our friends/family and staff in Cinci! AND I miss corresponding with all of you. I miss the intimacy with God that is only experienced in the valley and I miss my broken dependence on Him. In the valley, it was all so easy and came naturally, but now it takes so much conscious effort. Life has a way of pulling you in directions that occupy your time and mind with worldly "things"... things that are not eternal or lasting. Things that promise nothing and only provide you with temporary contentment. It's frustrating, but I will always strive to build my relationship with Him. He's my everything! I guess it would be fair to say that there has been a spiritual battle going on around us and satan would love to see us fall away and stumble. He so subtly deceiving that sometimes I don't even realize I'm off the path. Please continue to pray for guidance and protection for our family.
Not much else for now... I'll write again next week when I have all of Mack's lab results. Sending you all much love and many hugs, Amy
Thursday, May 15, 2008 7:11 PM CDT
HAPPY NEW CELL BIRTHDAY MACK!!!!!
It's a week long celebration for our family. Steve celebrated his 40th on Friday, I can hardly believe that! As of Tuesday, Lindsay and Taylor are officially TEENAGERS, which is even more hard to believe. Macks cells are a year old today and next Monday I'll be a year older, making me all of 28! hahaha!
We have been reflecting on the past year with great emotion, both happy and sad... happy for the miracle in Mack's life and sad for our friends who have lost to this monster called cancer! We are so undeserving of the abundant blessings that God has showered our family with and in our humility, all we can do is fall to our knees and praise our King! He is abundantly and exceedingly good! We continue to thank Him everyday for the mighty work He is doing in our lives. We also feel incredibly blessed to have such an amazing support system through all of you! You have carried us more than you know and impacted our lives greatly with your prayers! We love you all so much and still plan on celebrating together when Mack's immune system is ready! Not much else going on here, Mack's next appt in Cincinnati is on May 30th. I'll keep you posted.
Much love,
Amy
Monday, May 5, 2008 4:25 PM CDT
Finally got Mack's labs... her Igg level was good enough to hold next month's infusion and see how she does. That's exciting, but a little scary for us too because it was when her doctor took her off the IVIG last time that she relapsed. May just be coincidental, but it's engrained in our minds forever! Her stim test showed that her body is capable of responding to stress and producing steroids so we will continue to wean her off the hydrocortisone over the next ten months. It's a very slow process but we're happy to be heading in the right direction! Her immune studies were inconclusive because they had some problem with the machine. Bummer! We know that she had more lymph population than before, but we don't know how well the cells are working. They will repeat the test next month. We're excited for our first visit to clinic with Dr. Mike. I can't believe all she goes in for is a blood draw and an exam. That's amazing! She continues to feel great and is growing like crazy. She's still swollen from the steroids, that will probably stay with her for quite awhile.
My job continues to challenge me in so many different ways, I love it! Everyday is something new, and that fits my personality perfectly! I have so many stories as these kids have captivated my heart. Steve thinks I'm crazy, but I actually don't want the school year to end. It will be an adjustment not seeing the students for three months!
Everyone else is doing well. I'm not feeling great, but its hard to take care of myself when I have to take care of everyone else. Fighting some virus for a couple weeks now and I just can't kick it.
Please continue to pray for healing of Mack's brain... that she could retain and retrieve info and close the developmental gap. She's so excited for kindergarten! Thanks again for your amazing support for our family. We love you all more than you know!
Amy
Saturday, April 26, 2008 11:50 AM CDT
PLEASE HELP SUPPORT ERIC... WE'D LOVE TO SEE YOU THERE!!!!!
Another whirlwind trip to Cincinnati and back! Mack had a fabulous check up and got to see many of her friends at the hospital. Her music therapist spent time with her and she loved every minute of it! Her child life friends came to play and she was so excited to see everyone. Her BMT doctors are thrilled with her progress and have made the decision to release her care back to the oncology team. Dr. Mike stopped by and said seeing Mack was the highlight of his day! He also said she is a good reminder to the team to never give up hope. We hadn't seen Mike much on the other side of this valley, so our visit was very rewarding for everyone. We will still make monthly trips to Cinci for at least another year and then it will move to every other month. Mack's CBC and chemistries looked great, but we are waiting on the results of her immune studies, Igg level and some stim test to see if her body is producing its own natural steriods yet. We should have those results at the end of next week. If her Igg level is good, they will consider stopping the monthly IVIG and following her Igg levels to see what she does. If it's not stellar, she'll stay on the IVIG for another year. We are amazed at the work of God's hand, grateful for His love and provision, and eternally thankful for all He has done in our lives!!!
Much love,
Amy
Sunday, April 20, 2008 8:25 AM CDT
I know it has been entirely too long since I've posted an entry, but no news from us is always good news. Mackenzie has been doing well and is growing up so fast now. I can hardly believe how fast the days are going after our lives stood still for so long. We are heading to Cinci this week as Mack's appointment is on Friday. She continues to get an infusion of IVIG monthly which will most likely continue through next spring. She also has her labs checked monthly and we will begin weaning her off the steroids over the next 10-11 months even though she is currently on such a low dose. I'm not sure if they will check her immune system at this visit or wait until next month which will mark the 1 year birthday of her new cells. This will also begin the process of testing and watching for all the late effects of the chemo/radiation and transplant. She will be monitored annually by multiple specialists and continually followed at Cincinnati Childrens into her adult years.
My job has been going great, I love going to work and thoroughly enjoy working with the high school students. They've all stolen my heart, which can be draining but well worth it to make a positive impact on someones life! I often think I could run a reality show out of my office as it can be quite entertaining too. I am so thankful for God's plan and pray He will continue to use me in ways I would have never expected.
Lindsay had a break through arrythmia last week, but converted on her own. I haven't even called the cardiologist as it was an isolated event and she's doing well. Her next big work up/evaluation will be in July or August.
"Thank you" always seems so inadequated but I have to express our gratitude for your commitment and care for our family. We are so grateful that you continue to check in on us and hold us up in prayer.
Much love,
Amy
Friday, March 28, 2008 10:39 AM CDT
Hello from Memphis... we've been thoroughly enjoying our time away and Mack has been loving every minute of playing outside. I finally posted some new pictures in the photo album from this week. Her check up on Monday went well. White blood cell count was down from our last visit, but she's been fighting a little cold and her immune system is still learning as it remains fragile. We've begun to wean her steroids which will be a long process since she's been on them for so long. At our next visit, we will re-evaluate the frequency of her visits and the need for continued monthly IVIG. Sounds like they may try her off of it this summer or just keep her on it for another year and take her off next summer. Hard to rock the boat when she's doing so well. Praying for wisdom and guidance in all decisions regarding Mack's medical care.
We're heading back to Chicago tomorrow and hoping to bring spring with us! Please pray for our friend Amanda who had a transplant at St. Judes this past fall and is currently in ICU on the ventilator. Specific prayers for healing of her lungs. For more updates, visit her webpage at www.caringbridge.org/visit/amandajones Thanks for your amazing support and love for our family and friends who endure tough times.
Much love,
Amy
Friday, March 14, 2008 6:28 PM CDT
THANK YOU LAKE FOREST HIGH SCHOOL!!! (If you are an employee at LFHS, could you please copy this letter and email it to the entire staff for me. Thank you!)
Dear Friends at LFHS-
It is with great emotion, many tears and an overwhelming heart full of gratitude that I am writing to you today. I fall to my knees as I am humbled by the overwhelming measure of love and support you all have extended to our family during the last four years. Unless you are faced with a crisis beyond what you think you can humanly handle, you may never fully understand the offering you have given us. To suddenly and abruptly drop everything in your life, only to spend every waking moment, every breath, every ounce of energy you have, fighting for the life of your child is something we could not have done alone. Thank you so much for your understanding in allowing Steve to spend as much time in Cincinnati as he did and for the many flights you enabled him to travel by. Thank you so much for the “value” that you place on family and the way you take care of your employees and coworkers. Thank you so much for being there for Steve when we physically couldn’t. Thank you so much for every kind word, every bit of encouragement, every letter, every package, every post on the website, and every phone call. Imagine sitting in a hospital room day in and day out for over six months not knowing the fate of your child. You will then begin to see how incredibly valuable your gifts of encouragement have been, much more than I’m sure you are aware of! Every single day that I wake up and I see my daughters smiling face I am reminded first and foremost of the grace of God and the fragility of life, and secondly, of the importance of “doing life together”. You have blessed our family beyond measure in so many different ways, and we simply couldn’t have made it without all of you! Thank you so much for all the fundraising efforts and the enormous amount of financial support you have provided us with. There are no words big enough to express how thankful we are for your generosity. We have seen so many families destroyed by the financial strain and relationships ruined by the emotional stress and yet we remain intact. We credit all of you for carrying us through these difficult times. My eyes swell with tears as I marvel at your willingness to help us in such extreme ways. I wish there was some way I could tangibly express our thankful hearts, so you could see and understand how much you all mean to us. The impact of your generosity has preserved so many things for our family… things that would have been torn away from us, and that is a gift we could never repay. So, I ask you all to accept my most sincere gratitude as I say “thank you” to the Lake Forest community for believing in a vision that goes beyond the workplace, believing in the value of friendship and family, and for rallying around a family in need to carry them to victory! Praise the Lord for the healing that has been done in the life of Mackenzie Lee Johnson, may her journey be a gift that touches and impacts your life in unexpected ways and blesses you richly in the years to come. God bless you all!
With much love,
Steve, Amy and family
Saturday, March 8, 2008 6:12 AM CST
I've been trying to get to the computer to write an entry all week and here it is Saturday already. Just wanted to let you know that I am enjoying the new job. I've been working hard making changes to regain organization and structure in the nurses office. The days have gone by so fast and I really enjoy the staff and the students.
Mackenzie LOVES going to "Grandma Sue's" on Tuesdays and Thursdays while Regina is in class. She hasn't had any problems adjusting and is thriving with the changes. Another step which shows us she is sooooo ready for kindergarten in the fall. Steve and I went over to the elementary school this week to register her and it was such a profound milestone for us. We feel amazing blessed and grateful for the gift of her life. It was nearly a year ago to date that the doctors told us there was nothing more they could do for Mack with a cure as their goal and they would turn their efforts toward comfort measures and prolonging life. We praise God everyday for making ALL things possible and for giving us the wisdom, guidance and courage to keep advocating for her!!! And we give God all the glory and honor for His divine plan for Mack's life, that even doctors don't understand! I will try to post new pictures in the next day or so. Her hair is growing in completely wild, beginning to curl again, sticking up in all directions but we all love it! She continues to feel great and is doing well with all her teachers/therapists that see her on a weekly basis in our home. Her next appointment in Cincinnati is March 24th and being spring break, our whole family will travel continuing on to visit some friends in Memphis for the week.
Thats about all thats going on here. Still in awe of how God worked out the details so quickly in providing the perfect job for me with the perfect benefits to provide Mack with health insurance again after capping out her lifetime max on Steve's policy. He is so amazingly good!!! Please continue to pray for protection over Mack's brain and heart from late effects of all the chemo, radiation and treatment she has endured over the last four years. And continued prayers for her new cells to mature and learn all the things they need to do in order to keep Mackenzie safe. Still asking God to filter all her cells through His hands and regulate each and every cell in her body.
Thank you so much for always checking in on us, continuing to pray for our family and just for being a part of our lives. Love you all so much!
Amy
PS We are thinking ahead to the next school year and looking to hire someone M-F 7:00am until 11:30 or 12:00pm on a school calendar to care for Mack and get her on the bus for school. If anyone knows of someone who would be interested, PLEASE email us at hopeformackenzie@yahoo.com. In the meantime, we'll be praying for the right person and trusting our faithful God to provide!
Friday, February 29, 2008 8:07 AM CST
It has been a whirl wind several weeks. Mack is doing great... her immune studies continue to improve and we are all thrilled with her progress. It will be one year since her transplant, in May and so its time to start getting baseline studies and monitoring for the late effects of all the therapy she has received with chemo and radiation. We are specifically praying for protection over her brain and heart as these drugs can cause late complications with learning delays and heart damage. Our next visit to Cinci will be the end of March.
I signed as the school nurse at a nearby high school and will start work on Tuesday. God has been abundantly good in his provision and has worked out all the details with babysitting for Mack. The insurance will be effective the day I start, so as of Tuesday, Mack will be insured again!!!!! Amazingly, I'm really looking forward to work... the job description seems to be a perfect fit for my personality and my skills. I stand in awe of God. Even when I was signing the contract, the associate superintendant said, "this is very strange for us to be hiring this time of year" and "we've had several candidates in here that just didn't work out"... all I could think was... when God's in it... its out of our control. I believe the words He gave me when He said, "I've held this job for you". Thank you all for praying for a job, good insurance and babysitting details. This is a direct answer to your prayers!
Not much else for now. Mack has become a Cincinnati Childrens Champion and we will be doing a lot of PR for the hospital. Looking forward to giving back for ALL they have done for us! We are eternally grateful!
Much love to you all,
Amy
Saturday, February 23, 2008 7:46 AM CST
Hey guys... our trip to Cinci went great (as far as Mack's labs and check up), but the weather was BRUTAL. We actually had to stay a night in Indianapolis on our way home because the ice and snow storm made for treacherous roads! But, we made it and we are praising God for Mack's best labs EVER! Waiting to hear the results of her immune studies sometime this week.
I finally heard back from the high school on my job and I'm going in on Wednesday afternoon to look at the details of the health insurance and benefits. I also another interview at a nearby school on Wednesday morning, so please continue to pray for Gods guidance and direction in showing me what job would be best for our family.
Everyone else is hanging tough. I have friends visiting from out of town and we have a lot of fun stuff planned for the next few days. Its amazing to be doing "normal" things again. Please continue to pray for Mack... for protection during this wretched cold/flu season, continued protection of her bone marrow and healthy cells that develop to provide her with an incredible immune system!
Love you all,
Amy
Tuesday, February 12, 2008 7:11 AM CST
When God's hand is clearly in a specific situation, there is absolutely no denying it. The house we have been renting in Cincinnati sold and the new owners are closing on it in May which means we need to find a new residence, or get Mack insurance and give up our Ohio residency. I had been paralyzed in looking for job to get Mack insurance and just unsure of what God wanted me to do. I had been brainstorming ideas, but was failing on my own. I began really commiting the situation to prayer and calling on God to open doors and lead me in the direction that He knew was best for our family. Last week, I applied online for several positions, all in the school setting. The day after applying, I got a phone call to interview at a nearby high school for the school nurse position. I wasn't very excited about the opportunity at first, thinking I wanted to get away from nursing. And then I heard the Lord speak to me. "I've held this job for you". I started having a total change of heart and by the time I interview yesterday, found myself excited about this job. I was offered the position during my interview and continue to pray for God to work out the details, which I trust He will. I meet with human resources next week to go over the insurance, which is the most important component to this job. Please pray for good insurance benefits that would work for our situation. Also, we will need to find someone to watch Mackenzie on Tues and Thursday mornings from 8:30-12:30 (while Regina is at school) so if anyone knows of someone who would be available during those times and looking to earn a little money, PLEASE email us at hopeformackenzie@yahoo.com. Again, trusting Him to provide for even the smallest details.
Mack continues to feel good and we have been enjoying this calm. I'm amazed at how healing it has been for our family and pray that this season of our life would be long-lasting. Returning to Cincinnati a week from today (next Tuesday) and ask that you continue to pray for healthy bone marrow and the production of healthy cells for Mackenzie.
Thanks again, for your relentless prayers for our family. It is the power of prayer that has and will continue to carry us!
Much love,
Amy
Friday, February 1, 2008 7:19 AM CST
I know it has been entirely too long since my last entry and I apologize for slacking off. It was a crazy two weeks, and I don't know where the days went. Our trip to Cincinnati was long. Mack got her first IV since getting her central line out and she was so brave. I've never been more proud... she held still like a statue with barely a whimper, despite being so afraid and those big tears rolling down her cheeks... it broke my heart. Sometimes the little things are harder to deal with than the bigger things. Her veins are tough to hit because she's still swollen from the steroids and they are fragile from all the therapy she's had. First attempt went right in, but the vein blew as soon as they flushed. Second time was a charm! Thank you Jesus! We had a little scare with some "atypical lymph" cells seen on Macks CBC. These cells can be normal when you're fighting a virus, but Mack was asymptomatic and any abnomal cell in a child with Mack's history will send everyone into a tailspin. They drew several more labs for testing and had two pathologist review her slides. Praising God for the good results... both pathologist agreed they were not leukemic cells and all the follow up labs were good. Her engraftment is 100 percent donor cells which is the best gift we could ever receive. Those moments of "unknown" took five years off my life. I realize now that I went looking to the doctors again for some reassurance instead of running into the arms of my Lord. Why on earth would their "guess" or "prediction" give me any sense of peace? I guess because as humans we desperately want something tangible and we hate the unknown. Once I fell to my knees, and grabbed onto my Rock, my Strength, my Refuge I found peace again and surrendered to His plan. I realized nothing I could do would change the outcome of what was going to unfold, but holding on to Christ would surely sustain me. And listening to the words He gave me... "The Healing is Done", was an opportunity for me to exercise my trust in Him. Once again, I'm ashamed to admit that after 13 years of faithfulness to our family, my knee jerk reaction was to run to "man" for reassurance instead of running into the arms of my Father who knows ALL and is more invested in our lives than any doctor. I guess its a life long process of growing and changing, but His love for us will never waiver as He waits patiently for us to finally "get it"! On my knees praising Him today for continuing to protect Mackenzie and asking Him to help me change my human ways... I long to more like Him!
Not much else happening around here other than us all enjoying more and more normalcy to our lives. Next trip to Cincinnati will be at the end of February. I'm continuing to investigate ways to get Mack insurance so we can give up our Ohio residency and alleviate some of those extra costs. Please continue to pray for God's guidance in this area. Haven't heard anything from Make a Wish yet, so I'm assuming a spring break trip will not work out, but that may be best since Mack's immune system is still weak and flying could be a threat. Just leaving it all in an open hand.
Just wanted to thank you all again for keeping up with us. We are so glad to have you all in our lives and couldn't imagine life without you!
Much love,
Amy
Monday, January 21, 2008 9:10 PM CST
****Heading to Cinci, back late Fri for Mack's book signing at 2pm on Sat. More then.
Borders Books and Music # 144
1700 Maple Avenue
Evanston, IL 60201
847-733-8852
*************
Great Weekend!
Just a quick update to let you know we had a great time at Mack's book signings this weekend. Mack did an awesome job, but it all may have gone to her head... just a little. We were driving to the bookstore and I was lost as usual. We were in a hurry and I was "talking" to the other cars when I hear Mack in the back seat saying, "yeah, don't day know 'dares someone famous in dis car!" It was so funny. Jim, Gina and Debra were wonderful. We had such a great time together. Jim is absoultely hysterical and super fun to be around. Gina is a doll and we love her! They made Mack feel extra special and she adores them all. Mack did great with her Q&A and interviews and last night when we were putting her to bed she whispered, "mom, dat made me feel good". She always melts my heart. She has one more signing scheduled next weekend, but there is talk of more in the future between now and May. And YES they are trying to coordinate one with Ace, it will most likely be sometime in April and the location is yet to be determined. I will let you know when we have details. I will pictures in her photo album soon.
On the medical front, Mack continues to feel great. We are headed to Cinci on Wed and returning on Friday. Praying for another good, quick visit! Lindsay has been home sick with a 102.4 fever, but amazingly her heart has been steady. Praying she bounces back quickly. Thanks again for your incredible love and support. It was a year ago this past weekend that we were headed to Cincinnati with a very uncertain future for our little girl. You guys have been such a strong support and source of strength and encouragement for us, we could not have made it in as good of shape without you all! Thank you for holding our family in prayer!
Much love,
Amy
Tuesday, January 15, 2008 8:59 AM CST
****Added some new pics in the photo album of Mack geared up for her book signing today, tomorrow and next Sat. If you live in the area, we'd really LOVE to see you. Come on out and support Mack! It will be super fun. Jim and Gina will be singing a few songs, there will be a question and answer time followed by the actual book signing. Hope to see ya there!*******
We continue to enjoy this period of "calm" as we are beginning to see glimpses of "normalcy" to our life once again. Mackenzie has been feeling well and thriving despite feeling a little "cooped up" as she's confined to home. She is however looking forward to getting out this weekend as she attends two book signings for the Chicken Soup book. There was a great article about Ace and Mack in today's paper for anyone interested you can view it online here IDOL LIGHTS UP LITTLE GIRLS LIFE
We'd love to see you in the stores if you can make it. She will be at Barnes and Noble in Chicago this Saturday the 19th at 3pm. Here's the info about the Borders signings. Thanks again for all your love and support!
For Immediate Release
Chicago, Ill., Monday, Jan. 7, 2008
American Idol Top Ten Finalists Gina Glocksen & Jim Verraros; Evanston Author Debra Poneman;
and 6-year old contributor Mackenzie Johnson To Discuss and sign new “Chicken Soup” book
At Borders® stores in Naperville and Evanston; Informal Acoustic performance
Who: American Idol Top Ten Finalists: Naperville’s hometown girl Gina Glocksen and Chicago’s own Jim Verraros; plus Evanston author Debra Poneman; and 6-year old leukemia survivor and contributor Mackenzie Johnson
What: Gina, Jim, Debra, and Mackenzie will discuss and sign copies of “Chicken Soup for the American Idol Soul: Stories from the Idols and their Fans That Open Your Heart and Make Your Soul Sing.” Gina and Jim will also sing a few lines from their favorite songs.
When/Where: Sunday, January 20, at 2:00 pm Saturday, January 26, at 2:00 pm
Borders Books & Music Borders Books & Music
336 S. Route 59 1700 Maple Ave.
Naperville, IL Evanston , IL
630.637.9700 847.733.8852
Why: The wait is over! Not only can Idol fans enjoy the eagerly-anticipated new “American Idol” season (debuting January 15 and 16) but also meet past Idol favorites in person at two Borders’ locations. Naperville ’s hometown girl Gina Glocksen and Chicago rocker Jim Verraros will join Evanston co-author Debra Poneman and 6-year old leukemia survivor and contributor Mackenzie Johnson to discuss and sign copies of the new book, “Chicken Soup for the American Idol Soul.” Although there have been over 300,000 contestants in the history of American Idol, Jim and Gina are two of only 60 Top 10 finalists.
For the first time ever, the #1 show in television history and the #1 non-fiction book series in publishing history have come together to bring you “Chicken Soup for the American Idol Soul”--both dedicated to celebrating the triumph of spirit over adversity, the fulfillment of dreams coming true, and the power of love. The book contains stories from Carrie Underwood, Clay Aiken, Jordin Sparks, Ruben Studdard, Melinda Doolittle, Blake Lewis, Sanjaya Malakar, and many other top Idols from every season. This is truly the stuff that dreams are made of--and why almost 60 million people faithfully tune in week after week, year after year.
Debra Poneman has been a die-hard American Idol fan from Season 1 and says that Chicken Soup for the American Idol Soul is proof positive that what she has taught in her success seminars over the last twenty-five years really works: what we put our attention on will manifest in our lives in perfect timing. Many years ago, she set the goal to write a best-selling book that would transform people’s lives while working with people she loves. Her goal became a reality when she had the opportunity to co-author this powerfully transformational book and spend her days talking and writing with the Idols.
Additional
Information: Customers may take photos with the Idols, but no memorabilia will be signed.
Saturday, January 12, 2008 8:09 PM CST
"Thank You Lord, for making all things new again. May we never forget the suffering and Your grace that has saved us. We are nothing without you."
Wednesday, January 9, 2008 7:47 AM CST
WOW! It was a long day yesterday as we didn't get home until late last night, but we are home! Lindsay was so brave, although she was scared, she never complained. She never cried, or begged not to go, she was just resolved with the fact that this was something that needed to be done. The test ran about three hours, just as they had told us it would. A nurse came out every hour to give us updates on how she was doing and she tolerated the procedure well. Dr. Javois came to talk to us when he was done and he was thrilled with his findings. I think he started with "I have all good news for you". Lindsays pulmonary arteries look great and the vessels in her lungs are well developed (Praise God!). The pressures in her lungs are within the realm of normal, on the high end of normal, but these numbers were much lower than they had anticipated (Praise God!). Her heart function is excellent and even more important is that the ventricles are relaxing to a very low pressure after they pump which was also an awesome "surprise" finding (Praise God!) Her left ventricle which was enlarged on echo last month is now the same size as the right (Praise God!) Her valves are functioning great without really any regurgitation thats worth noting (Praise God!). And her homograph (the artificial connection between her heart and her lungs) is wide open compared to what they were expecting to find. She does have some compression of this homograph because of her growth, but nothing within the vessel and the compression is only causing about a 20 percent occlusion (Praise God!). The two baffles that they placed within her heart were still flowing nicely without any occlusions (Praise God!) AND her heart rhythm was rock steady (Praise God!) After Dr. Javois finished with all of that he said, "So, I think were good." I asked, "No surgery until May or June?" And he replied, "No, I think she's good for several years!!!!" UNBELIEVEABLE! We were shocked, totally not expecting that response. That was not even an option on the table going into the cardiac cath. His last words were "If its not broke, don't fix it"! Words cannot express our gratitude as God's mercy and grace washes over us once again. "Thank you Lord, for never leaving us. Your love for us is beyond our human comprehension and your faithfulness has carried us through the last twelve years. We praise you and thank you for all you have done in our lives and in the lives of our five girls. Thank you for your mercy and grace, thank you for watching over Lindsay's heart and protecting its function. Thank you for monitoring her heart rhythm and keeping it steady. Thank you for giving us the gift of time, time to rest and time to heal before going into battle once again. Thank you for continuing to provide for our every need. And thank you for blessing us by surrounding us with so many wonderful people. We love you so much Father, and we praise you in the storm and we praise you in the calm. Continue to hold our family in the palm of your hand and bond us together in all the years ahead. Continue to watch over and protect Mack and Linds. Keep us safe and bless us richly with good health. In Your Son's holy and precious name I pray, Amen."
Not much else for now. Basking in the moment and resting in the reprieve.
Love you all,
Amy
Monday, January 7, 2008 8:01 PM CST
It was an action packed week in MN as we hit the water park, Mall of America, tubing hill, ice skating, sledding, four wheelin' and hangin out with family. We all wished Mack could have been there! Steve enjoyed the "peace and quiet" of home when he wasn't at basketball practice and Mack spent time with Elise, one of her favorite sitters from LFHS. Thank you Elise, for continuing to serve our family and for entertaining Mackenzie and making her feel special all week! We love you!
Mackenzie continues to feel well and seems to be getting stronger and LOUDER and SILLIER! Here's proof:
undefined In Your Face
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We are gearing up for her book signings this month and heading back to Cinci on the 24th. She loves every minute of life without tubes... swimming in the tub is a novelty!
Switching gears... tomorrow we are heading back to the hospital for Lindsay's big cardiac catheterization procedure. Please pray for protection over Linds and guidance and wisdom for Dr. Javois. Asking God to send angels to hover over the room and stand guard around Lindsay. Her test is scheduled for 10am, but she is the second case so it may be later. I'm not sure how long it will be. Last time, they said 3-4 hours and it was closer to 8 or 10. She may or may not have to spend the night, we won't know until tomorrow. We should have some results tomorrow, but won't know the bigger plan until after they present her case at a conference of many doctors who consult together to come up with the best plan for these complex cases. I will try to update tomorrow night. Thank you all so much for being a part of our family, for continuing to stand with us, for your relentless support and your powerful prayers! We love you all so much!
With love and gratitude,
Amy
PS If you haven't seen the movie The Ultimate Gift... go rent it asap! So, so awesome! A must see for everyone!
Sunday, December 30, 2007 11:30 AM CST
For the first time in four years, Mack has NO tubes of some sort hanging from her body! Surgery on Friday went well, and the central line came out without difficulties. Praising God for His constant care. We had a good trip to Cinci, but have been suffering along side our friends who are overwhelmed with grief and loss. Our sweet friend Boey passed away on Friday and it has been another difficult loss for our family. Mackenzie has been processing some very deep thoughts abouth death and dying, especially for a five year old. These children who endure such difficult trials are like none other. They all have a special spirit about them and a deeper understanding of life than most adults. Trying to understand that we are not sad for Boey because she is experiencing amazing things that we cant understand on this side of heaven, but we are sad for her family who feels the immense void and loss of her life. This opened a discussion with the girls about heaven and I asked them what they thought Boey could be doing right now. Mack answered very seriously, "She's loving her hair". Please pray for the Byers family that God would wrap His arms around them and overwhelm them with peace and comfort.
The girls and I are heading up to Minnesota to visit with Steve's family for the week while Steve stays home with Mack. We received the results of Mack's first "immune studies" and her cells are still VERY immature. She basically has no immune system which makes her very vulnerable and susceptible to every germ and environmental threat to her body. Please continue to pray for a shield of protection around Mackenzie. Our next trip to Cinci is at the end of January as her visits have moved to once a month.
Wishing you all a Happy New Year and praying that we can all appreciate every moment of life as a gift!
Much love,
Amy
PS Thank you to everyone who has sent our family gifts this holiday season. We were, once again, overwhelmed by your love and support. Our hearts are filled with gratitude for your willingness to help make our holiday extra special. I post pictures soon.
Thursday, December 27, 2007 8:26 AM CST
Getting ready to head out the door to Cincinnati. Mack will be in Day Hospital in the morning for IVIG and then is scheduled in the OR at 1:15 to have her line removed. Please pray for safe travels and protection over Mackenzie. Specifically praying that God would dissolve any clots or sheaths near the line and that it would be an easy removal. Continuing to pray for a shield of protection around Mackenzie from all threats to her immune system as it recovers. And praising Him for the miracle He did in Mack's life and the time we have with all of our girls.
We had a Christmas to remember filled with many great memories and cherished moments. But our hearts remain heavy for all of our friends who are suffering. Thanking God for the peace we gain in Him and the grace He offers in His perfect plan for our lives. We rest in that.
If I have the opportunity to write an update from the hospital on Friday, I will. Otherwise, I'll write on Sat/Sun when we return home. Thanks again for your continued support and prayers for Mackenzie and our family. It means the world to us!
Much love,
Amy
Monday, December 24, 2007 10:41 AM CST
Thursday, December 20, 2007 7:26 AM CST
It is with a very heavy heart that I write this morning after learning news that our dear friend Ali passed away overnight (www.caringbridge.org/visit/awesomeali). This is a very difficult loss for all of us and our hearts bleed with sorrow for the Aardema family. Mack has been crying, "I didn't even get to say goodbye", she said as she ran to get the flipflops Ali made for her and is wearing them as I write.
It seems that we are surrounded by so much sorrow and suffering these days as many of our friends are hospitalized and stuggling to hang on to life. I don't know how to process the joy and celebration of Christmas along with all the sadness and pain our friends are enduring. How do you experience two completely opposite emotions at the same time? One of my very close friends lost her 23 year old cousin this week to a senseless drunk driving accident. She was out with some friends and had been drinking. She did the responsible thing and asked her friend to drive home. On their way home a 28 year old intoxicated girl was driving in the wrong lane causing a head on collision. Everyone walked away from the accident except my friends cousin who was killed. Paramedics arrived and presumed she was dead and pulled the drape over her. Hours later when the coroner arrived to retrieve her body, he found her still alive. She was rushed to the hospital and immediately taken into surgery. She was on the ventilator in ICU overnight when they pronounced her dead the next day after determining she had no brain activity. They were able to donate all of her organs, and its amazing to think that others will survive and families will be filled with gratitude and joy through this family's tradgedy. While they sat grieving and crying in a hospital waiting room, a hush of silence would fall over them and the music overhead was playing "Its the most wonderful time of the year". Its like trying to mesh two opposite worlds simultaneously. And when your world comes to an abrupt halt, the rest of the world continues on. My friend was at the mall last night shopping for a dress to bury her cousin in while most others were in a frenzy shopping for Christmas presents. Their families were supposed to be together on Saturday to celebrate Christmas... now they will be together to bury their loved one. There is so much suffering in this world and yet so many others walk around oblivious to it all. And those of us who have had the honor to suffer, because I see it as an honor (even though I don't like to suffer), God intimately reveals Himself to you in your brokeness in ways we would never have known Him without the suffering. Therefore we will NEVER forget those who are suffering EVEN during "the most wonderful time of the year". Our lives are enriched by that suffering and priorities change in direct correlation to it. We begin to live our lives more intentionally and with greater pupose because of the suffering and hopefully we draw close to the Lord and allow Him to shape and mold us during this time. In this "brokeness" we are more pliable and receptive to His ways. And we trust His ways are perfect, bringing us peace and acceptance even when they are not the ways we would have chosen.
So we celebrate the birth of a Savior, one who came with a plan and a purpose that involved suffering. THIS IS THE REASON FOR THE SEASON. He came to redeem us from this broken world. He fully understands every ounce of human pain, every emotion of sorrow and saddness and every reason for suffering. He brings ALL things together for good and we keep our eyes fixed on Him and cling to His promise to never leave our side... to faithfully provide and help us through the valley's of life.
Things here are stable. Just got back from Cincinnati late last night. Mack had her Day Hospital appointment and I had a follow up with my surgeon. We also got moved out of our apartment and into a house that we will be renting in Cincinnati (another amazing provision of Gods that I will share with you in my next entry). Mackenzie's counts were good, but her central line has been "finicky" and its been difficult to draw blood from. Because of her long history of fibrin sheaths and blood clots, we all decided it was best to just get the line out. We return to Day Hospital next Friday the 28th for IVIG in the morning and then Mack will have her line removed in the afternoon. Please pray for angels to hover in the O.R. and for God to guide the surgeons hand. Praying for any clots to dissolve and for protection over Mackenzie before, during and after the procedure. Praising Him every day for Mack's life and all of our lives knowing and resting in the knowledge, that man cannot add a day or take a day away from any of our lives. He knows exactly how many breaths each of us will take here on this earth. He has a plan and it is perfect. In our sorrow, we continue to praise Him for ALL He has done for our family and trust Him to tenderly care for us in our fragility. He is good, He is always good.
Lindsay is still scheduled for her cardiac catheterization on January 8th, please continue to pray for wisdom for her doctors and skill to place the catheter into Lindsays heart obtaining all the information they need to make the best decisions for Linds. Laying all of our girls down at the foot of the cross. He is able!
Thank you so much for loving us, for helping us, for supporting us, for praying for us and for caring enough to make a difference in our lives! You all have been the biggest blessing to our family and we are so thankful to have you a part of it! We've learned so much from you guys and we hope we can take those experiences and use them to serve others one day.
With much, much love and gratitude,
Amy
Sunday, December 9, 2007 6:22 PM CST
****Friday Dec 14 1pm update****
Since its no secret that I love Nick Lachey, I just wanted to let you all know that he will be on NBC's Reality show Clash of the Choirs starting Monday eve the 17th. He handpicked a choir from Cincinnati, Ohio. One of the ladies in the choir is a mother of an oncology patient at Cincinnati Childrens. CINCINNATI CHILDRENS HOSPITAL will be featured on the show and if their team wins... all proceeds will be DONATED to the hospital! GO TEAM CINCINNATI! Ok, I've totally given my heart to Cincinnati. If you watch, take the time to vote and help make Mack's hospital an even better place than it already is!!!
I can't even begin to express how grateful we are to be home, together, celebrating this holiday season! Every time Mack comes running around the corner or I see her coming down the stairs I am so awe-struck by the miracle of her life. The best way I can describe it, is like seeing a birth. I've seen hundreds of babies born in my nursing career and every delivery I had the honor of attending, I was struck by the miracle of life. It didn't matter how many times I had seen a baby being born... it NEVER was just an "ordinary event". It never got old or lost the "wow factor". I was witnessing the miracle of life! I have that same feeling when I see Mackenzie and I pray that it will never get old... that I will always remember the incredible gift that God gave us and give thanks!
Mack continues to feel great. Her biggest complaint is not getting out enough. Her social calendar outside her four sisters is lacking and she'll be the first to let you know it. She wants "play dates", she wants to go to dance class, among many other places, and she is counting the days until she rides the bus to kindergarten. Looking forward to spring and summer when her immune system is stronger and she can get out more! We'll be in Cincinnati two more times before the end of the month. Continued prayers for healthy bone marrow and protection over Mack and our whole family!
Loving you all, and praising God for bringing you into our lives,
Amy
Tuesday, December 4, 2007 9:42 PM CST
Mack was crying tonight before bed. I asked, "why you cryin' Mack?" She said, "cuz I'm sad dat all my fwiends are sick". Through her tears she continued, "now I not gonna be able to have a pway date." Trying to console her I explained that I understood why she was sad... its hard to see people we love feeling so lousy. I tried to lift her spirits by focusing on how thankful we are that her leukemia is gone. I asked her if she knew that there was a time when we didn't know if she would live or not. She shook her head, "yes". "I thank God everyday, Mack, that He healed you and you're still here with us." She wrapped her arms around my neck and whispered, "me too". As long as I live, I will never forget the next moment. From a long pause of silence, she looked up at me with a huge crocodile tear falling from each eye, and a stare that could pierce the soul. "Just wanna ask God, why I got cancer". Holding her even tighter, I said, "He knows why Mack. And someday, He'll tell you too."
Sunday, December 2, 2007 8:08 AM CST
***********Tuesday December 4, 2007 12pm UPDATE***********
Hey guys!
I know many of you have been inquiring about the book signings Mackenzie will be attending. I'm sorry it has taken me so long to get information to you. There are still dates in the works, but this is what I have so far...
FYI... to my knowledge, Ace will not be attending the signings. If you have further questions, please contact him. Mackenzie will be signing with several other idols from various seasons.
Saturday Jan. 12 Borders Bohemia, NY (tenatively pending health)
Saturday Jan 19th Barnes and Noble Chicago, IL
Sunday Jan 20th Borders Naperville, IL
Saturday Jan 26th Borders Evanston, IL
Looking forward to seeing you there and finally meeting! After all we've been through this past year, we've become like family. Thanks again for all your love and support. Mack's working hard on learning to write her name before January!!
Much love,
Amy
***************************************
Mack had a great visit to Day Hospital on Friday. Her doctors were thrilled with her "slow and steady" progress. She started an antibiotic for a possible sinus infection, as she's had a cold for the last several weeks. Her counts were a record high. Her white blood cell count was 6.3, havent seen a number like that in over FOUR YEARS!!!! Her platelets were up to 92 and her ANC was 4540! EVERYDAY is Thanksgiving Day in our home, EVERYDAY my wells with gratitude and EVERYDAY I praise the Lord for His unwaivering faithfulness that has carried us through the last twelve years. He is so good! Steve and I were reading some old journal entries, reflecting back on where we were last Jan-April. The miracle is so profound and He has given us so much more than we could ever imagine!
Mack will continue her every other week visits through the end of December. If her Igg levels and the rest of her counts are still looking good, then her visits will move to every three weeks. Thats awesome!
Lindsay had her stress test last Thursday and she did great. She was only able to endure eleven minutes on the treadmill, but her heart was rock steady. Her 48 hour holter monitor also showed solid heart rhythms and her electrophysiologist was thrilled. Her cardiac cath is still scheduled for Jan. 8th and that will determine the timing of her next surgery. Please continue to pray for protection of her heart, especially during the cath procedure, and for God's powerful hand to open up the homograph so no further surgery would be needed at this time! We've seen the impossible made possible through His divine intervention and answered prayers! We continue to place our lives in His hands.
Thanks again for ALL the things you guys continue to do for our family. You have no idea how thankful we are for each of you. Your support has eased our burdens more than words could express and we consider each of you a rich blessing in our lives. Praying for a year of health in 2008. Much love, Amy
Monday, November 26, 2007 8:49 PM CST
I think every day from here on out will be Thanksgiving Day in our home! We had a wonderful time at the cabin, although we were thinking of Ali the entire time. Many of you know our dear friend and have prayed for her in the past. She needs our prayers again as she's fighting hard in ICU. Please pray for healing and wisdom for her doctors. For more updates, visit her webpage at:
www.caringbridge.org/visit/awesomeali
Lindsay has her stress test this Thursday morning and then Mack and I will be heading back to Cincinnati for her infusion of IVIG on Friday. I can't believe how fast those two weeks went by. She continues to feel good and is trying hard to keep up with all her sisters. They ADORE her! It has been such a blessing to see them include her in everything they do! I never want to lose this appreciation for life! So grateful for all the "normal" things we do everyday, but take for granted. Please continue to pray for protection over Mackenzie and Lindsay. We continue to praise Him for His mercy and grace!
More when we return from Cinci. Much love, Amy
Tuesday, November 20, 2007 7:50 PM CST
Wow, I can't believe its been a week since my last entry... I have no idea where that time went. Got back from Cinci late last night. The doctors are thrilled with Mack's progress. She's been fighting a little cold, but holding her own. Her counts were great and she remains on minimal medications. There really wasn't any room to make changes, but thats a good thing at this point. We'll continue on our every other Friday schedule. Praise God! We had Mack's annual IEP meeting for school today and we feel incredibly blessed by the services they continue to provide for Mackenzie. Her teachers will continue working with her in our home this year and through the summer. Next year she will attend kindergarten in an integrated kindergarten classroom at the public school where she will be able to receive additional help for her retrieval problems. Even though she is testing age appropriate, they recognize the memory problem caused by the chemo in her brain and the radiation and will provide her with whatever she needs to succeed. We are so grateful!!!!!
Lindsays cardiac cath was rescheduled for January 8th. Her cardiologist didn't want to come in the day after Christmas. Wish we had the luxury of picking and choosing when we want to or don't want to go to the hospital. Please continue to pray for wisdom and guidance for her docs and healing of her heart. I'll keep you posted.
I had the opportunity to write with Chicken Soup for the American Idol Soul which is in stores now. The story has received much recognition and Mackenzie will be doing book signings and press with several of the Idols in Borders and possibly Barnes and Noble stores this January. I will keep you posted on dates and locations. It would be great to see you all!
We are spending Thanksgiving with my family this year and heading up to the cabin for the weekend. Mack is so excited! We haven't been there in over a year. I think every year of my life, I feel more and more grateful for the many, many blessings that have been poured out to us. Words could never describe what it means to us to have all five of our girls around the dinner table this Thanksgiving. It has been an unbelievable year! We are so thankful for each and every one of you! You have no idea what a blessing you are to our family and you may never realize the impact you've had on us. Thank you for helping us through the toughest year of our life! We love you all! Many wishes for a wonderful Thanksgiving holiday! God bless! Love, Aim
Wednesday, November 14, 2007 9:43 AM CST
Just a quick note to let you know that Lindsay's cardiac cath has been scheduled for December 26. Funny that I requested to have the cath done after Christmas... and... well, I guess thats after Christmas. Praying for good visualization of the conduit and all the things they need to see in order to make the best decisions for Linds. Also, praying for good pulmonary pressures, along with protection during the procedure and stable heart rhythms. And always pleading for more mercy and grace while trusting in His constant care. We will have results that day, but the doctors will meet as a team to determine a plan and that often takes weeks, unless there was something that needed to be addressed more urgently. Keep praying!
Mack is doing great, but is fighting a little cold. These are things that make you wonder what is coming around the corner. Praying her broken immune system can fight off the virus and for God's protection to keep her safe. We are heading to Cincinnati on Sunday and Mack will be in Day Hospital on Monday for her infusion of IVIG. I have to see my surgeon for a follow up appt and then we'll head back home. We were able to extend our lease through the end of December, and in the meantime, we are looking for a cheaper apartment to lease for another six months to keep our residency.
We started working with Make a Wish again with the hopes of heading to Hawaii over spring break. The kids are so excited... swimming with the dolphins is top on the list. Mackenzie was screaming and jumping up and down while chanting, "we goin to Hawaii, we goin to Hawaii!" when suddenly she abruptly stopped to ask, "Can we bring Ace with us?". I just about died. We may try to spend some time in LA on our way home... everyone's dying to go to Disney, but I'm not sure I'll be up for all those crowds. Praying for things to go smoothly and for the details to fall into place. It's an exciting opportunity and something for our family to look forward too in the midst of so much uncertainty! Living in the moment, its a life long lesson!
Thanks again for continuing to check in on us. We are so blessed to have the amazing support and love that you guys continue to pour out to us. It has and continues to make a difference in our lives. We love you all! Amy
Thursday, November 8, 2007 2:27 PM CST
Hmmmm... this is a hard one to write. I just spent the past hour on this entry and then it disappeared when I went to post it. Ugh! Sooooo frustrating! My emotions are all over and I just feel numb. Guess I'm overwhelmed by the mere thought of facing another heart surgery with Lindsay. Let me first start by saying that her eval today was good. Her heart function is excellent and for that we are grateful. But it appears that the inevitable is upon us. The echocardiogram showed her left sided ventricle (which is her morphological right ventricle) is enlarged. The cause of this is most likely from a narrowing in the conduit they placed to connect her heart and lungs. We knew this would happen and we are VERY fortunate to have gotten ten years out of the original conduit. The good news is... if they replace the conduit, her ventricle will most likely "recover" and return to normal size. The bad news is... its a MAJOR surgery and no one is excited to go back to the OR. We have schedule a stress test in two weeks (Nov. 29th) and then she will have a cardiac catheterization (angiogram) to further evaluate the narrowing in the conduit and the pressures in her pulmonary arteries. Fortunately, nothing is emergent since her heart function is so good. It sounds like she will have surgery in the spring unless something unexpected is found during the cath.
Lindsay made the cheerleading squad yesterday and that blessing has her thoughts preoccupied. Her main concern right now is not missing the next practice or game. We'll just leave it at that until we have more information from her cath. Please pray for wisdom for Lindsays doctors as they make some very important decisions and protection of her heart.
Mack, on the other hand, is back on autopilot. I never thought I'd see the day again. She's feeling great and doing well. Praising God for answered prayers in clearing the adenovirus! Beside a couple of pills twice a day, flushing her central line and hospital visits every other Friday, she's just enjoying being a kid again! We are still soaking in the gift of life that has been given to her. "Thank You Lord!"
Well, I think I'll go take some tyelnol and spend a little time in prayer... hoping He will reassure me that He's got it all under control and will mercifully carry this burden for me too. I am confident His timing is perfect and trying to rest in that. Also, claiming His promise to never give us more than we can handle. Whew! He must know I can handle more than I realize! I gotta tell ya, I'm ready to raise the white flag and throw down the towel. I'm too "spent" to gear up for another battle of anykind. But... somehow, someway... He will provide. He always has! More tomorrow. Much love, Amy
Saturday, November 3, 2007 7:58 AM CDT
It was a quick trip to Cincinnati and Mack's doctors continue to be amazed by her life. It was so funny because she was "remeniscing" on our way to the hospital, about all the things that have transpired over the past year. Talking about all her nurses, reminding me of the dreaded leg shots, but saying "Katie did a weawy good job wif my shots". She asked, "Can I see Sarah?" and "Whatta you fink Theo is doing?". "I was lucky I had a big room" she said. All I could see was the picture of grace that she was painting for me with such clarity. I sat there amazed that her reflections were all positive thoughts, as if she were referring to a vacation she had been on. Her "view" was definitely not a picture of suffering, not a picture of fear, and not of the battle of her life which reality likes to slap in our face. She actually went as far as saying... "'member when I heard da birdies. I took a wide in da ambulance to get sweepy meds and see Dr. Norb." I questioned, "When you were getting your radiation?" She said, "Yeah. Dat was fun, lets do it again." Amazing grace... can you see it?
Mack's counts were great! White count was 4.2, Hemoglobin 10.7, ANC 2400 and platelets were a record high of 32! Her infusion of IVIG went well, weaning the physiologic replacement of steroids, off the blood pressure patch and don't have return until Nov. 19th. She continues to feel great and is getting stronger every day. PT saw her yesterday and was amazed by the progress she has made in the last several weeks. Being at home, keeping up with the other kids and navigating the stairs has served her well... emotionally and physically. Praise God! Please continue to pray for protection, especially as we enter cold and flu season.
We started packing up the apartment in Cincinnati and moving stuff home as our lease is up at the end of this month. It all seems so weird. We left for Cincinnati last January wondering if we'd ever bring our little girl home. Seasons have changed, ten months have passed and life just keeps moving forward. Time does not stand still, even when our circumstances bring a halt to our lives. I feel like I've lost a year of life, but at the same time, gained so much. We have been blessed with the priviledge of witnessing a miracle and the honor of raising Mackenzie for another season... however long that season may last. "Thank you Lord!"
We are still trying to figure out the best way to get Mack more insurance. Please continue to pray for God's provision and guidance in this area. Also, Lindsay's cardiology work up is this Thursday (Nov 8th). Praying for good heart function and a pulmonary artery that has NO narrowing or blockage. We should have results on Thursday and I will post as soon as I know.
Thanks again for your love and support!
Many hugs and much love,
Amy
Saturday, October 27, 2007 12:56 AM CDT
I LOVE writing these updates from HOME!!! Mack has been running wild, driving her Escalade in fast gear, keeping up with all the other kids and loving every minute of "living"! She is so excited for trick or treating and can hardly wait for Halloween. She wanted to be Shrek this year and already has plans to be Froto from Lord of the Rings next year. She cracks me up. I will post pictures soon. Sometimes when I look at her, I get lost in the miracle of her life. It is so hard to put my mind around the magnitude of God's power, as displayed in Mack's life. And my gratitude runs so deep I don't know what to do with it. I don't know how to channel the volume of thanksgiving that flows from within me. The word "gift" has an entirely new meaning and "value" comes with loads of appreciation. I can't tell you how grateful I am for the ever changing perspective I've gained on life through this journey. I appreciate the suffering... for what's come out of it is priceless! I feel so underserving of the amazing grace that God has poured out to our family time and time again. And I will continue to praise Him and thank Him for His mercies that truly are new every morning! He is so good and sooooo faithful!
Mack's counts were awesome this week. Her platelets continue to slowly rise as does her hemoglobin and white count. Her adenovirus is beginning to come back although she remains asymptomic, the labs indicate its presence. Praying that her body will be able to keep it in check so that she doesn't have to restart the Cidofavir or weekly IVIG. We are heading back to Cinci on Thursday and Mackenzie will be in Day Hospital on Friday for IVIG. Hoping to drive back after the infusion on Friday. As of now her appointments will remain every other Friday. Please pray specifically for the adenovirus to clear and for Mack's immune system to grow strong.
Lindsay has a cardiology work up scheduled for Nov. 8th. Her heart has been doing awesome, but this work up is seven months past due and we know more surgery in inevitable. Please pray for good heart function and for Lindsays pulmonary artery to be wide open! I will keep you posted.
I'm feeling better every day. Moving about is no longer difficult, and I am looking forward to getting my energy back. So glad that is all behind me!
Well, thats about all thats going on here. More on Friday after Mack's appointment. Thanks for continuing to pray for our family. I hope you can see how your prayers have impacted our lives! Love you all, Amy
Monday, October 22, 2007 9:09 AM CDT
After a rough weekend, I'm happy to report that I am standing upright again! Whew! I was beginning to wonder if I'd ever be able to stand tall. Feeling much better, pain is definitely more tolerable and I'm moving around easier. Please continue to pray for swelling and pain to resolve and protection while my body heals. Going to the doctor this afternoon for a follow up appt, and then back again on Wednesday to get the drain out. Definitely NOT looking forward to that!
Mack and Steve headed back to Chicago yesterday and Regina and I will head home after my appt on Wednesday. Mackenzie's visits have moved to every other Friday and we just have to draw labs at home on the "off" Fridays. Please continue to pray for healing of Mack's marrow, production of healthy cells, and protection from all infections. Praising God for His continued provision for our family and His amazing grace in healing Mack. What an honor it is to be a part of His divine work through the miracle of Mackenzie. He is so good!
More tomorrow. Much love, Amy
Saturday, October 20, 2007 2:36 PM CDT
I'm home... but I am miserable. Pretty much gettin my butt kicked by all the pain. Yesterdzy I was so nauseated and thankfully that has passed. I am up and walking, if you can call it walking, half bent over. Everything on my stomach is so tight that I can't stand straight yet. I knew it was going to be bad, but this is much worse than I had anticipated. Makes all the c-sections look like a breeze! Everything went well with the surgery, thank you Lord. Please continue to pray for healing, pain relief, and protection during recovery.
Macks doing great and has been the best little care taker. She's a pro at all this and knows just what to do. Gotta run, too hard to write. I'll try again tomorrow. Love, Amy
Tuesday, October 16, 2007 7:46 PM CDT
Just a quick note to let you all know that we have been having a great time at home! Wow! It has been so incredible to be home for five whole days and "live" again! Mackenzie's teachers were blown away with how much she advanced while she was in Cincinnati and how good she is currently doing... both educationally and physically. Thank you to all Mack's therapists at Cincinnat Childrens who did a phenomenal job with Mack! Looks like she WILL be ready for kindergarten next year. She LOVED every minute of being home and working with her teachers again!
We got to see lots of friends/family this week and enjoyed a great afternoon at Dave and Busters (thank you Club Ace!) Mackenzie was super excited running from game to game and just when you thought those big brown eyes couldn't get any bigger... she spotted the prize store! Yes, an entire store full of prizes! It was so much fun.
Heading back to Cinci tomorrow and Mack will be in Day Hospital on Thursday for IVIG. Please continue to pray for protection and healing.
My surgey is scheduled for Friday 8-noon. Please pray for God to guide the surgeon and give her wisdom and guidance during my surgery. Also, for His hand of healing to cover me during recovery.
Before I run, Mack has been cracking us up all week, so I thought I'd post a few of our favorites...
"Mom, can you fwat iown my hair?"
"Dat just wike Ace, mom." "Whats is?" "He's sexy." (referring to some guy on tv)
"Mom, guess what? I think my cells are doing their thing. Day makin' babies.....(long pause) cute wittle babies."
"Mom, when you have your surgery, don't forget... no eatin'! And you're gonna be pwetty sweepy too. I'll take care of you."
Kali asked Mackenzie something about the future and Mack goes, "Na, I'm just gonna hang out at da hopal with Theo."
Thanks again for being a part of our lives! I will make sure that Steve posts on Friday after my surgery. Your love and prayers mean the world! Much love, Amy
Tuesday, October 9, 2007 11:12 AM CDT
****Friday 10-12-07 12:30pm UPDATE******** HEADING HOME!!!!! Mack's labs were really good... no more IV fluids at night! Praise God! Her counts are all on the rise, platelets went up from 10 to 14. They still have a long ways to go, but we'll take slow and steady. No visits until next Thursday so we will stay home until Wednesday. Just got word that Mack's insurance ran out in July. Got a pit in my stomach just thinkin' of it. I knew it was coming and I knew it would happen but something about being dependent on "the system" makes me nervous. Please pray for medicaid claims to be processed without any difficulty. Working on job opportunities for me to get Mack insured again and get us home! After next week, her visits should move to every other week. God is so good and I will continue to keep my eyes fixed on Him and trust Him to provide for us as He always has. More from home.... Love, Amy*************
I don't know where the days go to but they seem to be escaping me. We had an awesome weekend together and Mack had a great birthday... "weal birtday" that is. No surprise to anyone, she wanted to go to build-a-bear on her birthday and she wanted to eat at Big Boy. I delivered on the first wish, but frankly I couldn't have another meal at Big Boy this week, so we went to one of my favorite places, Mimi's Cafe, instead. Big Boy is Mack's FAVORITE place to eat... I'm not quite sure why, but those big brown eyes get her there several times a week. As a matter of fact, she was begging Steve this weekend... batting those eyes, she said, "pwetty pwease with a cherry on top?" and then mumbled under her breath "dat always works". She has said so many hilaious things in the last month, always bringing such joy to our lives, I cannot imagine life without her. Her sense of humor is evolving rapidly and she will always give her two cents.
Home health came this morning to draw labs and we are waiting anxiously for the results. We haven't given Mack IV fluids the last three nights and if her chemistries are good, she will stay off fluids. She also hasn't had a blood transfusion in five weeks and no platelets for three weeks. COME ON BONE MARROW!!! Her IVIG infusions are spacing to every other week, so if things are stable with her blood counts and chemistries, there is the potential of just going to the hospital every other Friday. AMAZING! So, we are still in Cincinnati, but have and continue to go home weekly for long weekends. Starting this Friday(after Mack's appt), we will be spending most of the week at home in Illinois so Mack can get her therapies and just travel down here for long weekends and Mack's Friday appointments. It is a lot of driving, but its worth it to be together. We have our apartment in Cinci leased until the end of November at which point we hope to be home and just visiting here twice a month. Please pray for Gods wisdom, provision and guidance in this area. We still need to work out Mack's insurance issues for us to give up residency here in Ohio. I've applied for a job at Steve's school, and am just leaving that in an open hand. I am completely burned out with nursing, so I can't see myself going back to the medical field anytime in the near future. We'll see where God leads us.
My surgery date was changed to October 19th, just having repairs to my abdominal muscle/facia which seems more involved than I originally thought. The surgery will be done here in Cincinnati at Christ Hospital and it should just be an overnight stay. Even the thought of those 24 hours at the hospital makes me sick to think about... just want to get out and get home. To say, "I hate hospitals" would be an understatement. Regina will come to Cincinnati and stay with Mack and I for the week after my surgery until I'm back on my feet.
Well, Mack and I are heading out to the mall. Please continue to pray for bone marrow recovery, specifically the production of platelets. And also prayers for stability of all Mackenzies electrolytes along with protection from all infections. Thanks for keeping up with us and for celebrating another year of life with us. We love you all more than you know. Amy
Monday, October 1, 2007 8:22 PM CDT
I don't think I can even sum up with words how fabulous our weekend was! To celebrate the gift of life, particularly the fifth year of life for Mack, was extremely meaningful. I find myself getting emotional and/or sentimental at the strangest times... moments when I would least expect it. We enjoyed every minute of Macks excitement at her party. She was wild and in her element. The kids cheered her on as she tried to break open a pinata. Yes, she truly did have two cakes this year... spoiled is an understatement. AND I'm not the only one who can't say "no" to her. Steve, Regina and the girls are heading down to Cinci this weekend to celebrate the "weal birtday". Oh, if only you could see how happy she is! See, my eyes are welling just thinking about her happiness. I cried through most of the movie "The Game Plan" this weekend, must just be a release. To witness a miracle and experience God's grace in abundance and His provision in perfection is just so awesome!!! The human mind cannot even comprehend His goodness. We are too limited.
Heading over to the hospital tomorrow for labs and a recheck on the UTI. Praying for bone marrow recovery and marrow full of healthy cells. Hoping the need for transfusions are behind us. Trusting in His protection from all infections and Believing in His