Monday, December 18, 2006 5:24 AM CST

*****Monday 5:15pm UPDATE***** Thank you guys so much for praying for us today. Mackenzie is amazing and did a great job with all her chemo. She did get sick, but not as violently ill as she has in the past and for that we praise God and give Him thanks for answered prayer. She is on the couch as I write and feeling wiped out. I just talked to the nurse at Childrens and Mackenzie's spinal fluid remains in remission. Another praise God! Ohhh, our hearts are so full of happiness! But, we also need continued prayers. Mack's white blood cell count and ANC just plumeted leaving her very susceptible to any and all germs. Please pray for God to supernaturally shield her, and keep her safe in His arms. All of her chemo will be on hold and we will recheck her counts next week. Because the 6-TG that she takes orally at home takes a while to get out of her system, they expect her counts to remain low next week. But we know that God is bigger than 6-TG!!!! Praying on our knees for good counts next week and protection from all infections! We had a lot of fun family things planned this week that Mack won't be able to participate in, but we are thankful for my mom and dad's willingness to watch her so the rest of us can still enjoy some Christmas activities. It won't be the same without Mack, but we'll try to keep some normalcy for the other girls. Thanks again for your love and support. Please continue bringing Mackenzie before our gracious Father trusting in His constant care. More on Friday. Love, Amy
PS I almost forgot, Mack's Igg level was still a little lower, but seems to be "plateauing". We are waiting for many more immune function test results and I will let you know when I receive word. Please pray for increased Igg and healing of Mackenzie's immune system.*****************

Just a reminder and request for prayer today as we head back to Childrens for Mack's chemo in her brain. She will also receive an IV chemo and two oral chemo's today. Please continue to pray for mercy. For God's divine intervention to block all the wicked side effects and protect Mack from getting violently ill. Also for peace for me as I feel "burned out" and anxious about going through this again. It was hard shaving the spot on her head last night where they will enter with the needle. Excitingly, her hair is long enough that it falls over the bald spot and you can't even tell a portion was shaved. She is so brave and continues to amaze me with her positive attitude. She told me, "I just do pukies little bit." She knows what's coming and yet she does not resist or complain about going. Also, specific prayers for wisdom and skill for the nurses and protection during the procedure itself. And continued prayers for protection of her brain and healing of her leukemia. Thanks for carrying us today. For some reason, today just feels hard to do. More tonight when we return. Much love, Amy

Tuesday, December 12, 2006 7:19 AM CST

******Thursday 12/14/06 3pm UPDATE********** Praise the Lord, we have good news all the way around! My biopsies all came back pre-cancerous. What a blessing they were found early! I've started two different medications and now have to find a way to decrease the stress in my life. Yeah right! That will be a major task! The type of polyp they found, called an adenoma can be a hereditary form of colon cancer and therefore my parents and brother must have colonoscopies. My girls will be watched starting at age 26... like I can even think that far down the road. Mackenzie's cardiology appointment today went well. The blockage is more than stable and her little body is compensating so well that they don't think they will have to do anything about it. Her check-ups will be annually now instead of every couple months! Just another thing to unload from my mind. What a wonderful gift! Praising God as I write for His constant provision for our family. Thank you all, sooooo much, for your prayers! I'm waiting to hear back from Childrens about possibly moving Macks brain chemo to tomorrow instead of Monday. I'll let you know when I hear. Keep praying. Your prayers are powerful! Much love, Amy****************

Things have been super busy here, but fortunately just with normal everyday things. It is so wonderful to "re-enter" the world and think about something other than fevers, arrythmia's, chemo, doctors appointments and medication schedules. I pray, with all that is within me, that this will mark the beginning of a new season in our life. A season that brings back some normalcy, some spontaneity, some "carefree" living allowing us to enjoy the gift of life again. If Mack stays on schedule, she should finish her chemo protocol at the end of May or beginning of June. We are ready to unload some of the medical stessors in our life as they have taken a toll on us physically. I had my upper and lower GI last week, and am waiting on biopsy results. Will hopefully hear GOOD news tomorrow. Mack is seeing cardiology on Thursday for a follow up echo to evaluate the blockage in her heart. Please pray for God's divine intervention to open the blockage without any further procedures. Next Monday, the 18th, we'll be back at Childrens for the horrific triple chemo in Mack's brain. After that dose, she will have one more round in March. Believe it or not, one more seems like TOO much! We've begun the process of consulting an immunologist at Cincinnati Childrens and expect to travel back to Ohio after the holidays. Please continue to pray for healing of Mackenzie's bone marrow and immune system. Also for God to grant wisdom to the immunologist, specific to Mackenzie's needs. And that He would help guide and navigate many decisions that will need to be made regarding this immune system problem. We are looking forward to Christmas, and as usual, the excitement level around here is at an all time high. Although Mack asked me yesterday if Ace could come instead of Santa. I was cracking up. Her personality is something else! Thank you so much for continuing to support us through prayer. I know, without a doubt, that those prayers have been a major factor in getting us through to "today". We love you all so much and are very grateful that God has brought you into our lives. I'll write again on Thursday night after Mack's appointment and when I receive my biopsy results. Please continue praying for more mercy and grace for our little girl, especially with the brain chemo coming up on Monday. Much love, Amy
PS A note of praise for Ali's improvements. She has moved out of PICU and is on the oncology floor after an entire month!!! Please continue to pray for healing of all infections, increased strength and destruction of every leukemia cell in her body!!!!!

Sunday, December 3, 2006 5:01 PM CST

15 degrees and a foot of snow, I NEED to move somewhere warm! When I start my journal entry with "the weather", you know things are stable here!!! Praising God for Mack's health and these "normal days". I drew labs today and Mack's counts actually looked too good. I'm not sure if they will up her chemo or not. Unfortunately, her Igg levels continue to plumet. I'll be talking with her doctors tomorrow about resuming the monthly IVIG infusion. As disappointing as this is, we are grateful that there is treatment for it. Please continue to pray for wisdom for Mack's doctors in treating this immune problem. And continued prayers for healing of her leukemia. I gave Mack her IV chemo today and she'll get another oral chemo tonight. She's scheduled for the triple chemo in her brain on December 18th. UGH! I can hardly stand the thought of it!!!!! Please pray for mercy and grace and protection from the violent side effects of these toxic drugs. Mack will need cardiology follow up in the next month, I hope to get that scheduled tomorrow. Continued prayers for protection of Mack's heart and no further complications from the blockage in her SVC. Lindsay will see cardiology again in the spring when we will make some decisions about whether or not to proceed with a cardiac catheterization. Again, asking God to lead and guide us in these difficult decisions. I'll keep you posted.
Thanks again for praying us through... please continue to pray for Ali as she is still in PICU. Praying she comes off the ventilator tomorrow! Praise God for the improvements she has made. For more updates, visit her website at www.caringbridge.org/visit/awesomeali
Much love to you all,
Amy

Monday, November 27, 2006 8:52 PM CST

Not much going on here, for which we are VERY grateful. We had a wonderful thanksgiving... the first one that Mackenzie was really able to enjoy. "Re-entry" was rough for me after getting a small taste of "care-free living" while away in California. Mack's been getting stronger everyday. Her physical therapist was here today and said she was amazed at the progress she had made this past week. She is on her way to mastering the stairs in a "four year old fashion". Her right leg is sooooooo weak and the left compensates for everything. But she's getting there. Still a long way to go with speech... she received a package today from one of Ace's fan this afternoon and of course, she had to rip into it right there at the post office. Inside was a whole bunch of toys and a few cards. If you can imagine, Mack was shaking with excitement. She opened one of the cards and out fell a five dollar bill. Her eyes got the size of saucers and she yelled, "I DOT A HUNDWED DOWWARS!!!" It was a priceless moment. She continues to struggle with "retreival" issues. For example, if you point to a square and ask her to name the shape, she might not be able to remember "square". But if you ask her to point to the square, it's not a problem. Cognitively things are good, it's just retrieval is difficult which is a known complication from all the drugs she has received in her brain and from the cranial radiation. Things that are significant to her, don't seem to be a problem with memory or retrieval. We have been enjoying these days thoroughly and praying this is just the beginning of a BIG long stretch of stability!!!! Please continue to pray for healing of Mack's leukemia, healing of any damage to her brain from the chemo and radiation and protection from all infections. Also, prayers for the blockage in her heart to be cleared without any further intervention. Drawing labs on Sunday and asking specific prayers for good Igg levels!!!!! Thanks for keeping up with us.
Please continue to pray for healing over Ali as she is still in PICU. And for all the family's decisions regarding her care. Pray for God's wisdom to be revealed and that He would lead and guide, making His Will very clear to the Aardema family. You can check her progress at:
www.caringbridge.org/visit/awesomeali
Your prayers truly carry those of us who are too weak and weary to press on when our burdens are too heavy. Thank you for faithfully praying for those in need!!! Much love to you all,
Amy

Sunday, November 19, 2006 3:58 PM CST

I made it home after a fabulous time away! My cousin Meghan and I were in Phoenix for a few days and then California for four days ... spent most of our time in Beverly Hills... had some successful star spottings (Heidi Klum and Nicole Ritchie along with many reality stars), attended Ace's birthday party and ate some great food (Griddle cafe)! We discovered Sprinkles cupcakes and vowed we never eat anything but Sprinkles from here on out, when it comes to the cupcake world. Unbelieveable! Upon arrival to our hotel in LA, our car was searched by police, CIA and bomb sniffing dogs. Snipers were on the buildings surrounding our hotel and there was police and secret service everywhere. It was like something right out of a movie. Come to find out, the Prime Minister of Isreal was staying at our hotel. I guess he has alot of "opponents". Mack and the girls did great back home with Steve and his parents. Taylor had the flu bug after Kali and we are praying that it stops there! Drew labs today and gave Mack some IV chemo this morning. Her labs still look good and we are soooooo thankful for her stability. Her Igg level dropped significantly though, so I'm not sure it will hold without IVIG replacement. Will draw labs again in two weeks. She seems to be feeling ok and tolerating the chemo well. Her hair grew so much while I was gone, and she seemed to grow up even more. Praise God for all the answered prayer!!! We were having so much fun while we were away, that we didn't sleep much. Feeling like I need another vacation to recoup from my getaway! Thanks again for covering us in prayer! Much love to you all! Amy
PS Ali is slowly improving. They have added a carinbridge site for updates. You can get current info at www.caringbridge.org/visit/awesomeali
Please continue to pray for the entire Aardema family.

Monday, November 13, 2006 7:06 PM CST

Praising God this evening for some answered prayer in that Ali is improving. They found e-coli in her blood and are testing lung tissue for infection too. Her fever is coming down, but still high and they have been able to wean some of the ventilator settings and drugs. Please continue to pray for healing and protection.
I'm headed to California tomorrow morning at 4am and will return on Sat. Steve's parents just got into town to watch the girls. We went out to dinner and Kali started puking at the restaurant. Please pray for a quick recovery for Kali and that this flu bug would NOT spread to anyone else. I can't believe the timing of this.... just typical! Not only protection for the other girls as grandma and grandpa Johnson try to hold down the fort, but also protection for me as I've been looking forward to this time away. And of course, protection for Mack as she is more susceptible. I don't think I will have access to a computer while I'm away, so I will update on Saturday when I return. I'm sure I will have many good stories to share. Much love and many hugs to you all, Amy

Sunday, November 12, 2006 11:21 AM CST

*******7pm UPDATE on Ali from her care page....
TROUBLES CONTINUE

Ali is still with us -- we like that. But she is sedated so that she doesn't know what is happening and cannot talk. It is very difficult to see her like this.

Her oxygen level is actually okay and they have reduced the concentration of oxygen from 60o 40Her kidneys still are hanging on and getting rid of lots of fluids. However, some specific levels are up. They seem convinced that the underlying issue is an infection in the blood stream. They do not know what that is yet. And Ali has no immune system to fight it.

Some very specific issues to pray about are:

No suffering!
Lungs hang in there!
Kidneys hang in there!
Identify infection quickly and have drugs to quickly overcome it!
Blood pressure needs to increase without all the drugs & fluids!
Fever needs to come down!

We never know what we're going to do next...pray, cry, or nap. Julie made it home for a few moments and said Megs is very upset -- understandably so. Kara is a little young to understand all this yet.

Time to go hold Ali's hand for a few more hours! **************



****clarification on Ali's carepage... there are no spaces just: aliaardema thank you so much for supporting the Aardema family!************

Sending out an SOS to ask for prayers for our dear friend Ali. Ali resumed intensive chemo two weeks ago after learning of her relapsed leukemia. Last night, she became suddenly and critically ill while at home. We are devastated. Here is the update from Ali's carepage. PLEASE pray for Ali and her family.

BIG TROUBLE!

Ali was breathing funny late Saturday night. At one point she became unresponsive and stiff. We called 911. An ambulance took us to the Emergency Room at Spectrum Hospital/DeVos Children's Hospital.

A large team of folks was waiting for us. They were happy we got there quickly and thought she may have a blood infection called sepsis (We have no idea what people are talking about right now! Sorry for any incorrect terms.)

Once stabilized, they transferred us to PICU (Pediatric Intensive Care Unit.) Things got worse. Ali's breathing got worse and they had to sedate her and put her on a breathing machine. Her kidneys which were having a tough time seem to be working fairly well. The cardiologists are working with the intensivists. Her pulse is very high 140-160. Her blood pressure was very low and they have been able to bring that up with meds.

There is a possibility that she has a pneumonia but they're not sure since they have not sucked much from her lungs. The last term I heard as some sort of "distributive shock." The intensivist was hoping that we have hit the peak of the episode but was not sure. We are waiting on tons of labs.

Ali is sedated so that she doesn't feel all the tubes and lines running into her -- a couple new central lines. There are at least 6-7 pumps pumping in fluids and meds. There are monitors all over.

We are praying and begging for the life of Ali!

You can leave a post on Ali's carepage at www.carepages.com You will need to create a login. Ali's page is: AliAardema
Thanks for walking with your brothers and sisters in Christ who find themselves in very dark places. We are all part of God's family and He never intended for us to walk alone!!! Much love, Amy

Monday, November 6, 2006 7:05 AM CST

****FRI 11/10/06 8:30am UPDATE****** Just a quick note to let you all know my ultrasounds were normal!!!!! Praise God! They are trying to move up the date of my upper and lower GI... I'll keep you posted. Thank you so much for your continued prayers. Mack's doing great and I ask you to specifically pray for protection for her (and Lindsay) this next week as I will be out of town and Steve and his parents will be here with the girls. Love you all! Amy***********


***TUES 7:15pm UPDATE*** Just wanted to let you all know that my doctor appt today went well, but I do need to have several tests coming up. Tomorrow I'm have a whole gammet of blood work and an ultrasound of my liver and gall bladder. And Dec. 5th an upper and lower GI - not fun! Keep praying and I'll keep you posted. Love, Amy*************

I love that our journal entries are weekly instead of several times a day because that indicates things are well in our home. Life is so strange. When your in crisis, the rest of the world just disappears, you see things so much more clearly as far as values, and things that are truly important... your entire perspective changes. The closeness and intimacy you encounter with our loving Father is so awesome and reassuring and you want to be in that moment forever. When things in life are just "going along", the world pulls you in so many different directions. Your vision which was once so sharp, so easily becomes muddled by the things of this world. Things that you wiped out and disregarded when you were in crisis, now pull you away from the one thing you want to be close to... God. I hate the constant tug-o-war. It's like a continuous battle to keep refocusing on Him. I wish my eyes never moved to and fro, I want them to stay fixed.
Mackenzie is feeling well and growing like crazy and we praise God every day for that. But, we don't gain false security by this "status quo". You never know what tomorrow will bring and so we continue to strive at living in "today", which is another exhausting battle. Your mind wants to take you to all the "what ifs" and we continue to feel "shell shocked". That feeling of guardedness from what's going to hit us next is always right there trying to rob us of the joy of today. In so many ways, I wish I could go back to the days when I was niave, oblivious and just carefree going about my life. But in more ways, I am so grateful for the "awareness" I live with, the incredible lessons I've learned and the growth that has developed my relationship with God. I only wish that intimacy and vision wasn't so difficult outside the crisis.
Many of you may have heard that our dear friend Ali has relapsed again. This has been very difficult news for us as we love this girl and her family dearly. And at the same time, when we hear of our friends enduring tough times, it's like a reality slap in our face that we too could be in those shoes tomorrow, next week or next year. Please pray for healing of Ali's leukemia. For her spirits to be gaurded as she continues to have an amazing attitude, for her heart to stay soft to the Lord and for strength for her family to travel the road ahead. Also specific prayers for wisdom for her doctors to make the best decisions in Ali's treatment and for Ali's body to tolerate the treatment without complications. Thank you all for not only praying for us, but also all those who we love. Ali is a very special girl and our hearts are so heavy to see her go through more treatment. Cancer stinks!
I drew Mack's labs yesterday and her blood counts are still where they would like them to be. She did well with her IV chemo and we check another week off our "roadmap". I'm finally heading to the GI doctor tomorrow as all this stress has taken a major toll on my body. Please pray for answers to be found to all the discomfort I'v been experienceing and chalking up to stress the past few years. I'll keep you posted.
Not much else happening here. The kids are all well and busy with school stuff. Lindsay and Taylor had a great time at camp last week. Thanks for your prayers for Linds... her heart never had any irregular beats that she could feel and she was able to rock climb and participate in the "high ropes". Amazing! Praise God! Miss our daily chats, but know that no news here is good news. Much love to you all, Amy

Monday, October 30, 2006 2:14 PM CST

Lindsay and Taylor finally got over that nasty pneumonia bug! Tee's took quite a bit longer to recover, but she's on the mend. They are at GWC camp this week with all the 6th graders. Please pray for Lindsay's heart to beat regularly without any arrythmia's while they are gone. Kali and Lexie both have colds and we continue to pray that Mack doesn't catch any of the germs going through our home. Praying for a shield of protection to surround her and keep her "germ free"! Mackenzie has been VERY tired the last three or four days. Not sure what that is all about, hoping its just a growth spurt or something "normal". We got some trick or treating in on Sunday in my brothers neighborhood as they always celebrate halloween the Sunday before. The kids had a blast and it worked out great since GWC camp fell on halloween week. The rest of the crew plans on getting out again tomorrow for a little bit. Mackenzie is very proud of her "stash" that she worked so hard for! Not much on the agenda for the week, therapies here as usual and chemo again next Monday. I'm just trying to hold the fort down... it's REALLY hard being home full-time! Thanks again for your continued prayers and support that have carried us thus far. We're countin' on ya to bring us through the home stretch!!! Much love, Amy
PS Just a funny Mack story... Mackenzie was working with her speech therapist today and Jody asked, "How's Mango, is he still alive?" (Mango was our hamster) Mack said, "no he died". "oh, I'm sorry Mack" Jody answered. "Dat's o-tay, its not your fault" Too hilarious!!!!

Tuesday, October 24, 2006 6:19 PM CDT

Well, it seems Taylor may finally be turning the corner. She has not had a fever all day today and is looking much better. Still coughing quite a bit so I'm not sure if she'll return to school tomorrow or the next day. Mack's Igg levels came back good so today could possibly be her last dose of IVIG. Please pray for healing and recovery of Mackenzie's immune system and for protection from all infections during this cold/flu season. Even though her Igg level is holding... it takes eight weeks for the IVIG to be completely out of her system. Also, she may be producing Igg, but they may not be effective and so we are praying for a good healthy immune system. Time will reveal all these answers. Her liver function tests and chemistries all looked good too. Praise God! Not much else going on over here. Thanks for all you do! Keep PUSHing and PULLing....I think we have seven or eight more months to go! Much love, Amy

Sunday, October 22, 2006 4:13 PM CDT

***MON 10/23/06 5:45pm UPDATE***** Just heard from the pediatrician and the chest xray shows that Taylor has a right middle lobe pneumonia. She has not responded to the initial antibiotic and they are going to try and switch her to a different one. If she's not better in 48 hours then she will need IV antibiotics. Please pray for healing of Tee's lungs and protection for the rest of our family... especially Mackie. More tomorrow. Love, Amy********


******MON 10/23/06 4:30pm UPDATE**** Just got back from downtown. Mack did great with her chemo, labs looked good, no changes in chemo. Still waiting to hear results on her liver function tests and her immune function tests. She's feeling well and we asking continued prayers for protection from all the germs in our house. Steve took Taylor to the pediatrician. She still had a fever this morning, but it was normal this afternoon. HOPING it has broken for good. Went over to the local hospital for a chest xray and are still waiting for the results. I'll let ya know when I hear any news. Thanks for all your prayers. More later. Much love, Amy********

I was hoping everyone would be on the mend by now, but as Lindsay is on the upswing, Taylor is still hanging on to her fever and coughing like crazy. Still praying for God's protection over Mackenzie (and the rest of the girls) as we are exhausting all of our efforts to keep Mack in a bubble and away from the germs!!! Tomorrow I need to take Mackie downtown for chemo/labs/etc., so Steve will take Taylor to the pediatrician and my guess is that they'll send him over to the hospital for blood work and chest xrays since it will be day six of fever. Mackenzie is still feeling great, her hair is growing in so quickly and she's such a joy to be around. Maybe it has something to do with being the youngest of five girls, but her personality is so radiant. She has me laughing everyday and we praise God for the gift of laughter in our home! These past several months have been so wonderful.... praying this will be the beginning of a long season of harvest! Please continue to pray for healing of Mack's leukemia, protection from all infection, protection/healing of the blockage in her heart and healing of any damage to brain cells from the chemo and radiation. Also, please pray for Lindsays heart to remain stable and the homograph to remain wide open. She is supposed to have a cardiac cath this spring which is usually followed by surgery BUT if all is well....we may be able to hold out a little longer. We are going for the latter option! Also prayers for Taylors fever to resolve and that she would be feeling well again very soon. Thanks again for keeping up with us and continuing to pray for our family. We love you all so much! More tomorrow after I return from Childrens. Much love, Amy

Thursday, October 19, 2006 9:36 AM CDT

****3pm UPDATE**** Just got back from the pediatrician. Not exactly sure what the girls have, but since they've had exposure to some bad, contagious pneumonia and with Mackie's immune system and Lindsay heart, they are just going to treat them both as if it is pneumonia. She didn't want to put us through going to the ER for chest xrays to confirm for which I was VERY grateful! So they started them on antibiotics and nebulizer treatments. They will obviously be home from school again tomorrow and praying by Monday everyone will be back on their feet and feeling well. In the meantime, we would grately appreciate your continued prayers. Much love, Amy**********

Just a quick update... Lindsay and Taylor are still home from school with fevers. Heading to the doctor this afternoon. I was sooooo hoping they would just resolve and we wouldn't have to make another doctor visit. UGH! Please continue to pray for resolution of their fevers and protection over Mackenzie (and the rest of us)! Mack is feeling good, it kills me to think of something like this landing us in the hospital. You know me...always jumping from A to Z. Feeling frustrated today, but the girls have been so good about staying in the bonus room upstairs and away from everyone else. I'll update again later today. Continued prayers for Mack's chemo on Monday... and wisdom about weaning her off the IVIG. I was so excited to get her off, but now I'm wondering if maybe we should wait until cold/flu season is over. The extra immune boost may be just what she needs to get through the season. We come so far and the end is actually in sight for the first time in three years. I think the thought of losing that vision is too overwhelming for me to deal with. Gotta run and take care of the sickies. Love, Aim

Sunday, October 15, 2006 8:40 PM CDT

****TUES 10/17/06 3:40pm UPDATE******* IEP meeting went well today. Mackenzie will continue to receive services in our home this school year. We'll meet again in January to discuss what services she may receive over the summer to help her maintain what she's already learned. With memory/retrieval problems, consistency is so important. Praising God for His provision in every area of Mack's life! On the down side... Lindsay and Taylor just came home from school looking and feeling terrible. Both have 103 fevers and coughing saying their lungs hurt. Ahhhhh, PLEASE pray for protection for Mackenzie. If she gets the fever... it's an automatic admission to the hospital. I hate this time of year... cold/flu season is BRUTAL!!! My parents are out of town, so I'm not quite sure how we will quarentine Mack. We usually ship the sick ones off to my parents. Prayers for Lindsay and Taylor too, for a boost in their immune system and quick resolution of these fevers. I'll keep you posted. Much love, Amy****************

Wow, another week gone. This week flew by! Mackie's still feeling good and things here are as normal as can be with five kids. I don't know what we've been up to, but we sure can keep ourselves busy. Steve starts coaching in a few weeks and I'm not ready to be a single mom again. Ugh! So hard when he's not around to help with dinner and homework. Hoping we will be able to go to more of his games this year providing Mack's immune system is not too compromised. Our IEP meeting is Tuesday. Please pray for continued services for Mackenzie. No IV chemo this week, but we'll go downtown to Childrens next Monday for chemo, labs and to check Mack's Igg level to see if we can continue weaning the IVIG. Its crazy how you can't wait to get her off all these meds, but then at the same time, you're scared to death to stop them. I can't even imagine when she finishes this protocol and we just stop giving her medicine. I've been giving this kid so many oral meds, shots, IV meds, IV fluids, IV nutrition and NG feedings over the last three years I can't even imagine just going to bed at night or getting up in the morning without doing nursing things. And at the same time, you become so dependant on the chemo... it is your safety net and it scares ya to walk the tight rope without the net below. I've completely lost track of time, but I think she still has nine more months of chemo and it feels like its just around the corner. Praising God for so many things these days, but especially the gift of life! Please continue to pray for healing and protection over Mackenzie, good blood counts next week, tolerance to chemo and healing of her immune system so that she won't need the IVIG for the rest of her life. The usual agenda for the week ahead, I'll update again on Tuesday after our IEP meeting. Thanks again for all the blessings you have been a part of! We love "doing life" with you guys! Much love, Amy

Monday, October 9, 2006 6:16 PM CDT

Well I guess we've been busy "living" because I didn't even realize how long it had been since my last entry. All is well at our house!!! We are currently trying to recoup from all the partying we did this weekend. Mackenzie had an incredible fourth birthday... one we will never forget. She was feeling great and loving every minute of being in the spotlight. If I hadn't lived the last four years with her, I'd never believe all she has been through. Praising God for His hand of provision and protection on Mackenzie AND thanking Him for all He has done in her life!!!!!!! Mackenzie had her IV chemo today and her port worked great, labs looked perfect and she tolerated the chemo well. She's still tired from all the activity and late nights over the weekend, but then again, so are we!!!!! Full week of therapies ahead. Mackenzie has been doing great, but her teachers are seeing a lag in her long term memory. Please pray for healing of her brain and recovery of every cell that aids in memory. Our IEP meeting is a week from Tuesday... continued prayers for the school district to continue providing services in our home. You guys are the best friends/family one could wish for and we are so grateful for your involvement in our lives. It is an honor and a joy to share our lives with you!!!!! Thanks for all you do for us, we wouldn't be where we are today without all of you!!!! Much love to you all! Steve, Amy and the girls

Sunday, October 1, 2006 2:50 PM CDT

I'm happy to report that we have been enjoying the week without medical encounters! Mackenzie has been feeling well and keeping up with the kids in the neighborhood. I've noticed she's been falling a lot lately and I know the brain chemo can affect balance, but also the IV chemo makes her ankles weak... double whammy. We were in Target yesterday and she must have fallen a dozen times. I said, "Mack, what's going on?" She looked at me with those puppy dog eyes and said, "I don't know, maybe my walkin' not workin'!" She's got an answer for everything! I cherish these days and praise God for the "lull" at the moment. I can't believe Mack turns four next weekend. This is the first year that she's really excited about her birthday and feeling well enough to enjoy it. Every commercial she see's on TV, I hear, "you buy dat for my birthday, mom?". I guess she's got high expectations for her celebration this year. Seems crazy to think she's been sick three out of her four years of life. Our hearts are so full of joy for the opportunity to see her grow and develop. Her personality is one of a kind and she keeps me smiling! Not much on the agenda for the week. Mackenzie's teachers have seen remarkable improvements in her retention and retrieval issues this year. She LOVES having all her teachers come into our home and looks forward to each session. Our annual IEP meeting is set for October 16th, please pray that we will be able to keep all of Mack's services for this next year. And as always, continued prayers for healing and protection over Mackenzie. No IV chemo for another week. Sending our love to you all, Amy

Monday, September 25, 2006 9:45 PM CDT

*****Tuesday 9am UPDATE***** Well, we don't always see tangible and direct answers to all of our prayers, but this one we sure did! Almost as if a lightening bolt struck down, I was caught off guard by the phone ringing at 7am. It was Dr. Javois. After much review and consults with other doctors they have decided to "wait" on opening the blockage in Mack's SVC. (note, this was not the original plan) Since she is in no immediate danger and her body is compensating well, the risk of going in through cath while she is on chemo and fighting the leukemia outweighs the benefit at this point. It's just too risky right now. They feel the blockage is localized trauma from the port catheter. She will have serial echocardiograms every couple of months to watch her closely and make sure things aren't getting worse. If they see changes or she becomes symptomatic with puffy face, bulging neck veins or headaches then they will need to correct the blockage sooner than later. I can't tell you how amazed I was... very clear answer to my prayers from last night (see below) and I have great peace and confidence knowing that God is in control of Mack's medical course. Feels like a huge weight off my shoulders! Please continue to pray for the blockage to remain stable.. or even open up! We know ALL THINGS ARE POSSIBLE! Mack is doing better today, no puking since last night. I will give her the infusion of IVIG later this afternoon. She hates being hooked up, but it will only be for a couple of hours and then I can take the needle out of her port and she can be "free free". Besides, she's found ways to get around while being hooked up... she puts the IV bag and pump in one of her baby strollers and off she goes. One smart cookie! Thanks again for your incredible support. Keep PUSHing and PULLing for our baby dolly! Much love, Amy*******************

Thank you all for praying for Mack today. There are no words to describe the picture of someone getting chemo directly into their brain. It's just plain awful. But Mack is a great patient and did as best as could be expected. She was sick most of the afternoon, but seemed to be turning the corner at bedtime. Anxiously awaiting His new mercies tomorrow! Praising God as I write... we received "the phone call" this eve that Mack's spinal fluid is still in remission!!!!! Such a gamet of emotions today, but with tears of joy in my eyes, I pray: "Dear Heavenly Father thank you for carrying us through another treatment. Thank you for watching over Mackenzie and loving her with Your perfect love. Your love is amazing and steadfast and it sustains us. You are the reason we are still standing and You are the bond that has held our family tight. My heart overflows with thanksgiving and praise! Please continue to heal Mackie's little body and keep her safe. Protect her from any negative long term effects of these potent drugs. Use them to destroy every last leukemic cell in her body, while protecting all the healthy cells. Father, we ask that You would give us clear guidance and direction to know what the best treatment would be for the blockage in Mackenzie's heart. We have turned to You in every moment of this journey and trust in Your Ways! Show us clearly, without hesitation what her heart needs. Press upon Dr. Javois' heart and give his mind a clear vision on how to proceed in treating Mackenzie. Lord, once again, man falls short and comes up "baffled", but YOU know exactly what to do. Make it known to us, God Almighty. Thank You for the gift of life and the blessings you have given us in these five precious girls that You so graciously entrusted to us. Partner with us in parenting them and help us to raise them according to Your Will. Father, we continue to hold each of them in an open hand before You. Your faithfulness in caring for our family has never waivered and we trust You. We love you so much. And we praise You for all you have done and all you are going to do! In Jesus name I pray, Amen."
Heading to bed now as I'm exhausted. I'm expecting a phone call from Dr. Javois tomorrow with more thoughts on how to proceed with opening the blockage in Mack's heart. I'll write again when I hear word. Thanks again for praying us through!!! We love you all! Amy

Friday, September 22, 2006 2:32 PM CDT

**********new pictures posted*************

We're home!!!!! Mackenzie did great for her test today... woke up at 4:45 this morning smiling and ready to go to the "hopal". She actually asked if she could sleep there. Poor thing thinks its her home away from home. She did great with the anesthesia and the test was done without complications "Thank you Lord!" Spoke with Dr. Javois about the results and the bad news is that things are still kind of in a "grey area" as they don't know what the blockage consists of. The good news is that it looks like whatever it is, it can be taken care of through cardiac cath. But without knowing for sure whether or not it is a clot... they don't want to enter with cath and disrupt it because if it broke free that could be VERY life threatening. So, it looks like further imaging will be needed. They are thinking about having her do a CT scan to see if they can see calcification. If it is an old clot, it will be calcified and much less risk for breaking free. We are actually praying for calcification. Crazy huh? The narrowed area is right at the tip of the catheter from her chemo port where the superior vena cava meets the right atrium of the heart. It is significanly occluded... at least 75ccluded from his best guess. Fortunately, Mack's body is compensating and the blood is draining into another vessel and bypassing most of the blockage. If not, she'd be in crisis. The blood vessels "higher up" from the clot are not dilated and in good shape. So we have time to figure out how to go about this. Dr. Javois was going to speak with his colleagues and get back to me Tuesday. He is thinking he may be able to enter through cardiac cath, use a tool to push the chemo port catheter into another vessel, open up the blockage and then pull the chemo port catheter back into place. This way she would not have to have surgery to have the port removed and then another surgery to have it replaced. We just need to decipher before hand whether the blockage is clot or "reactive tissue" from irritation from the chemo port catheter. If it's a calcified clot or reactive tissue it would be safe, but if it is a "newer" clot it would have the potential of breaking off. NOT GOOD! Please pray that further imaging would provide this information and we can make educated decisions on how to proceed. Praising Him that she is stable and seemingly not in danger while we figure out how to fix the problem. And praising Him for answered prayers in keeping Mack safe today! Now on to Monday... oh boy, I'm really not ready to tackle this next beast, but there are no choices in the matter. Heading downtown late morning for IV chemo, labs and chemo in her brain. PLEASE pray for protection from ALL side effects. That Mack's port would work perfectly and that He would extend more mercy and more grace guarding her from getting violently ill. I have no doubt that He could spare her that suffering and we are asking Him for precisely that! Continued prayers for healing of her leukemia, good lab results, protection of all her organs and healing of any damage to her brain from the chemo and radiation. She continues to struggle with "retrieval issues" with memory, but showed improvement during some assessments this week. Not much else on the medical front... but that's a full plate as it is! Plan on enjoying this weekend to it's fullest. Dave, Sherri and the kids are coming over tonight, party to attend tomorrow and big game on Sunday... Bears vs. Vikes! Thanks again for your faithful prayers and support. I wish you could fully understand what that means to us and how it feels to be endlessly carried by prayer. How great is His family!!!! More on Monday after we return from Childrens. Much love to you all, Amy

Thursday, September 21, 2006 10:35 AM CDT

Oh the frustrations of hospitals!!! Received a call this morning saying that there was a scheduling error and Mackenzie's MRA needed to be rescheduled for next week. You can imagine how well that sat with me. I won't go into the details, because I feel my blood pressure rising just thinking about it, but after MUCH "discussion", they will do Mack's case tomorrow... at 7:30 am. Praise God! I was so upset, to say the least, when I got the phone call and now I can't help but wonder if it is all a part of God's provision for Mackenzie. We will need to leave home before 5am so it will be an early morning, but at least Mack won't have to go the whole day without eating. Also, this will allow more time for someone to read the study and get back to me with results. Mackenzie started complaining of a headache this morning which she has never said anything about before. This can be a sign of the obstruction becoming more occluded. For that reason alone, I am grateful that she is having her films done tomorrow and the earlier, the better. Please continue to pray for protection over Mackenzie. She will be under general anesthesia and the test is about three hours in length. Also prayers for wisdom and discernment for the doctors to know and understand the best way to correct the blockage and of course, healing for Mack. Praying when they get in there... there will be no obstruction. Wouldn't that be awesome!!!! I'm hoping to know some info tomorrow eve and will update you as soon as I know anything. I could only guess at the numbers of prayers being lifted on Mack's behalf and we are soooo grateful for each and every one of them! He hears and He answers! Praying His Will be done and at the same time pouring out the desires of our heart at His feet. He see's our bleeding hearts and He knows every tear we have shed. He is merciful and just, loving and tender, powerful and mighty, attentive and faithful. He is able! Continuing to lay our sweet baby down before Him....
With love and gratitude,
Amy

Monday, September 18, 2006 2:20 PM CDT

After many, many phone calls today... the MRA is scheduled! Unfortunatly, since they are fitting Mack into the schedule, we had no choice in the day and time. They scheduled her for Friday at 2pm at Christ Hospital in Oak Lawn. I'm sure you remember from Linds...it's about a two hour drive south for us and we need to be there at 1:00 so it will be an all day event. It's brutal because Mack won't be able to eat all morning due to the sedation. Also, being Friday afternoon, my guess is that we'll have to wait until Monday to hear any results. I'm going to ask Dr. Javois to do us a favor and read the MRA on Friday if he can, since Mack is scheduled to get IV chemo on Monday. It would be nice to know what the deal is with the obstruction before we administer chemo in the port. She'll also receive the triple chemo in her brain and we're asking you all to pray for protection against the side effects. I can hardly stand the thought of it... she's usually puking before the infusion is even completely infused and she looks and feels miserable. We'll definately give her the Ativan again to help her sleep it off along with the Zofran and maybe steroids... that seemed to help last time. Please pray for good results from the MRA, specifically that she has grown collateral arteries off of her SVC to bypass the obstruction, for the location of the blockage to be easily accessible and "fixable" and for protection over Mackenzie. Not much else is going on here. Mackenzie has been feeling great, and keeps us laughing. She IS the drama queen!!! Her personality has been shining and we are loving it! The rest of the girls are well... Lindsay has been having some rhythm issues again, please pray for stablity of her heart especially while Mack has pressing issues at hand. Thank you guys, for everything you do for us! You are the most amazing friends and family and we are so glad that you are a part of our lives. Thanks for your continued prayers, your love, your support and your continued words of encouragement. They bless us richly! More on Friday night after we get back from the MRA. Keep praying... He hears and He is answering! Love you all, Amy

Friday, September 15, 2006 5:54 PM CDT

Just a quick note to let you know that we have some sort of plan, but we're still waiting. Together with the doctors, we have decided to do an MRA.. an angio MRI (MRI with dye) to visualize Mack's heart and vessel leading in and out of the heart. We were hoping to get it scheduled today, but of course, no one called me back, so we wait until Monday. They were hoping to fit Mackenzie in next week, but it is a long test...about three hours. She'll need to be heavily sedated, but hopefully not under general anesthesia. If they can't fit her in next week, then it will be the following. No further decisions will be made until we get the information needed from the MRA. Please pray that they doctors will be able to determine the nature of the blockage, the exact location of the blockage and how much of the vessel is occluded. Also, praying that her body has grown collateral arteries off the SVC as the body's natural way of bypassing the obstruction. Specific prayers that none of the other vessels "higher up" from the occlusion are dilated and that no intervention would be needed at this time. Because of the risks involved in opening the blockage with a stent, balloon or surgery... if she has grown collaterals and the blood is draining sufficiently, and she's not symptomatic with a puffy face or neck, they may just watch it closely. Also pray that they'll be able to fit Mack in the schedule and she'll be able to have the MRA this upcoming week. In the meantime, Mack continues to feel well and has us cracking up with her amazing little personality. We cherish these days!!!! Steve and I are heading out to dinner tonight as the kids on student council at LFHS continue to volunteer their time babysitting for us. What a blessing they have been!!!!! More on Monday after I know when the test is scheduled for. Much love, Amy

Thursday, September 14, 2006 4:44 PM CDT

Well, we are still waiting to hear back from Mack's docs... guess I'll have to call them tomorrow, not surprising. Fortunately, I was able to speak with two of Lindsays doctors who both had the same thoughts without speaking to one another. They both feel that this blockage is a large clot formation caused by the catheter in that vessel from her port where chemo is administered. I guess they see this frequently, but not sure why the docs at Childrens said, they "never see this". They both agreed that further evaluation would be warranted before a recommendation would be made as to how to deal with the blockage. They said many times children will grow collateral arteries off of the superior vena cava and drain into the heart. The body's way of "bypassing" the blockage. If she has grown some nice collaterals, then they may be able to enter the vessel and heart via cardiac cath through one of those vessels without disrupting the existing catheter port. They also said, that where the location of the blockage has formed, is very near the SA node (the body's natural pace maker). The risk of damaging the SA node and creating a bigger problem for a little girl who has already fought her way this far may be greater than leaving the blockage alone, depending on the degree of blockage. Talked further about placing a stent, but seems everyone wants to talk to their colleagues before proceeding from here. More heads are better than one, but the waiting is tough. Hoping to know a little more tomorrow or at least get some imaging scheduled because that could take another week or two. A week from Monday is when Mack is scheduled for her chemo in her brain and also, IV chemo in her port. Not sure if the port is stable enough to use for chemo administration so these questions all need to be sorted out before then. Keep praying as God leads you, specifically for wisdom for the doctors and for protection over Mackenzie. More tomorrow. Much love to you all, Amy

Monday, September 11, 2006 3:57 PM CDT

Well, you guys know how it goes. Waiting, waiting and more waiting on doctors... it's the story of our lives. Obviously, I still have much to learn about patience as I constantly find myself in these situations that are out of my control and I am forced to wait. My knee jerk reaction is FRUSTRATION everytime, but at least I'm trying to control my emotions. No word from Childrens today... it will take them all week to get together and make some decision. I called down to The Heart Institute where Lindsay is treated and her doctor... the one who would place the stent in Mack's heart if we chose to go there, is out of town at a conference until Thursday. Looks like we won't know any plan until the end of the week. Mackenzie's labs yesterday were good... her immune system is supressed just enough and her numbers are right where they want them to be. Yea God! Still waiting (of course) to hear from her oncologist to see if they will make any changes in her chemo doses, but my guess is that they will stay the same. She's still not up to the dose she should be at, but I guess that's ok if it's keeping her supressed. She's been acting more tired the last couple of weeks and I was thinking she was going through a growing spurt... now I wonder if it's related to her heart. Please continue to pray for protection of Mack's heart, that He would open the blockage enough so that we could wait until Mack was off chemo until we addressed the heart issue (still have 9 or 10 months of chemo), for healing of her leukemia and protection from all side effects. Her preschool teacher has noticed a "retrieval" problem in her learning abilities. This has to do with memory which we were told would be affected by the chemo in her brain and the cranial radiation. Please pray that God would heal those area's and there would be no memory deficits. Two weeks from today is Mack's ommaya tap when she'll get the triple chemo in her brain. UGH!!!! It's harder to do the nasty stuff the longer you are away from it and the more normal your life becomes. Please pray for mercy and grace, that He would protect her from becoming violently ill as she has gotten the past. It's a busy week of therapies around here and Mackenzie is loving having all her teachers back. Thanks for always checking in on us. We are so thankful for each of you and praise God for bringing you all into our lives. You have blessed us beyond measure!!! I'll write again on Thursday or Friday...as soon as I know how we will address the blockage in Mack's heart. Keep praying... we have a great God who makes all things possible!!!! Love you all, Amy
PS I was thinking about that poem that Heidi wrote for Lindsay's heart. I found it this afternoon and thought now I have two girls with "special hearts". Do you remember this?

If you listen very quietly,
you might just hear their wings.
I've been walkin' with my Jesus
and He's tellin' me these things.
That there's angels all around me
to protect me from all harm.
Within their wings I'm hiding
and I'm sleeping in their arms.
So BE PATIENT WAIT ON JESUS,
for you know right from the start,
It is God who walks beside me
and He holds MY SPECIAL HEART!!!!

THANK YOU HEIDI... YOU HAVE BLESSED ME ONCE AGAIN!!!!!!

Saturday, September 9, 2006 12:35 AM CDT

I did get some sleep last night, but woke up early with a pounding headache... that all too familiar feeling of being hit, blindsided, right in the core of your being. It takes the wind out of your sails, thats for sure. Feeling teary, but not sure why its hitting me so hard. We've been in worse places. It is the "unknowns" that are so much harder than the "knowns". My thoughts are random and in my humaness, of course they would like to spiral downhill. I can't help but think we've come this far, to lose our little girl to something totally unrelated and unexpected. But fortunately, I have the strength to refocus and cling to the truth. Crazy enough, I was going to share this devotional with you yesterday, but I didnt' have the strength to type it all and then Jane wrote about it in the guestbook. This is from Psalm 4:1... it reads, "Thou has enlarged me when I was in distress." The devotional is deep, but awesome if you can grasp it. Stick with me.. it reads... This verse is one of the greatest testimonies ever written regarding the effectiveness of God's work on our behalf during times of crisis. It is a statement of thanksgiving for having been set free not FROM suffering but rather THROUGH suffering. In state, "Thou has enlarged me when I was in distress," the psalmist is declaring that the sorrows of life have themselves been the source of life's enlargement.
Haven't each of us experienced this a thousand times and found it to be true? Someone once said of Joseph that when he was in the dungeon, "iron entered his soul." And the strength of iron is exactly what he needed, for earlier he had only experienced the giltter of gold. He had been rejoicing in youthful dreams, and dreaming actually hardens the heart. Someone who sheds great tears over simple romance will not be of much help in a real crisis, for true sorrow will be too deep for him. We all need the iron in life to enlarge our character. The gold is simply a passing vision, whereas the iron is the true experience of life. The chain that is the common bond uniting us to others must be one of iron. The common touch of humanity that gives the world true kinship is not joy but sorrow - gold is partial to only a few, but iron is universal.
Dear soul, if you want your sympathY for others to be enlarged, you must be willing to have your life narrowed to certain degrees of suffering. Joseph's dungeon was the very road to his throne, and he would have been unable to lift the iron off of his brothers had he not experienced the iron in his own life. Your life will be enlarged in proportion to the amount of iron you have endured, for it is in the shadows of your life that you will find the actual fulfillment of your dreams of glory. So do not complain about the shadows of darkness - in reality, they are better than your dreams could ever be. Do not say that the darkness of the prison has shackled you, for your shackles are wings - WINGS OF FLIGHT INTO THE HEART AND SOUL OF HUMANITY. And the gate of your prison is the gate into the heart of the universe. God has enlarged you through the suffering of sorrow's chain.
If Joseph had never been Egypt's prisoner, he would have never been Egypt's governor. The iron chain the bound his feet brought the golden chain around his neck.
Ok, I know that was really deep, but really awesome and soo, soooo true. This is the perspective I will continue to see our suffering through and look forward to the day when I wear the golden chain around my neck! Please continue to pray for wisdom and guidance for all of Mack's docs and healing and protection of Macks heart. This was one thing we never saw coming but we trust in His perfect plan. Love you all so very much. More tomorrow. Love, Amy

Friday, September 8, 2006 7:59 PM CDT

Ohhh, what a day. I’m totally exhausted. But amazingly, I am bringing you this update FROM HOME and for that… we are grateful! We unexpectedly had to go downtown to Childrens after Mack’s cardiology visit this morning. First let me just say, “Praise the Lord!” for answered prayer…. Mack’s QT interval is normal!!!! I guess I should have had you praying for overall heart health… but I never expected any other issues. The doctor decided to do a baseline echocardiogram since Mack will need lifetime cardiology follow up. She’s at higher risk of developing a cardiomyopathy from the chemo she has received. A total shock to us all… they found a blockage in Mackenzie’s superior vena cava. Not knowing what the blockage was, and realizing the high risk for it to be a blood clot since the catheter from her port lies in this vessel… we needed to go downtown for further imaging. Blood clot meant life and death issues and automatic admission to begin anticoagulants. I can’t tell you how many times we’ve been knocked to the ground with news like this. I felt like my knees were going to buckle and I was going to vomit all at the same time. After more tests, they were able to rule out the blood clot but are still uncertain as to what the blockage is and why there is a blockage. Her echo from six months ago did not reveal any blockage and unfortunately it will need to be addressed. From echo, they cannot determine exactly how much blockage is present, but in order for there to be flow disturbance… it must be 60-70% occluded. She will need to have a cardiac cath to determine what is causing the blockage and exactly how much is blocked. There are several problems with this… all the chemo she has been exposed to makes her blood vessels very fragile increasing the risk of the procedure for bleeding and infection. The venous port would need to be removed under general anesthesia and then another surgery again to replace it. A stent will need to be placed to open up the blockage, but the area is a little tricky because it is right where the vena cava attaches to the right atrium. I can hardly muster up the strength to say it, but if the blockage can’t be opened with a stent, then she’d need open heart surgery to open the blockage. I have no idea when any of this will take place. All of her docs have to have a big pow wow to discuss the pros and cons and weigh the risks and benefits. Once again, there are no clear cut answers. They will call us sometime next week with the plan. In the meantime, I plan to take Mack to Lindsays doctors for another opinion and most likely have her treated by her team of doctors. I’ve already established the trust with her cardiologists and that relieves a lot of my anxiety. Please pray for clear wisdom and guidance as to how to move forward. Specific prayers regarding which doctors should do the procedure, timing of the procedure and of course protection for Mackenzie. Praying that the stent will be placed with success and we will be spared from another heart surgery. I know His mercies are new every morning and I cling to that promise! Please pray, once again, for more mercy and more grace for our baby dolly. I feel so weak and so fragile. It’s very difficult to continue bouncing back. My reserves are low and yet His are plentiful. I am confident that He will give us the strength to endure and I am so glad that I can tap into His strength. I couldn’t do it alone!
On top of all that… this is our chemo weekend… YUCK! I will access Mack’s port on Sunday, draw her labs and give her the chemo infusion. Please pray for good function of her port despite the blockage in that vessel. Well, it’s not quite the news I was hoping to share this evening, but I’m so grateful that I have you all to share this with! Your faithful prayers have carried us for eleven years… I don’t know what we would do without you all! Thank you so much for sticking by our side… never waivering in your loving care for our family. We love you all so much and we’ll get through it TOGETHER!!!
Much love,
Amy
PS I’ll update again on Sunday night after I receive Mack’s lab results… keep praying, keep praying!

Friday, September 8, 2006 2:31 PM CDT

Amy just called me and asked me to give an update. She is currently on her way down to Children's with Mackenzie. When they were at the Cardiologists today, Mackies QT interval looked good. But the echocardiogram showed some blockage to her superior vena cava. The doctors were not sure if it is scar tissue or a blood clot. We are hoping that the doctors at Children's will be able to further diagnose the problem today. If not, it looks like it would have to be another hospital admission to conduct further tests on her heart. Please pray for wisdom for the doctors and that they would be able to figure out what is going on. Also, that the hospital stay, if there is one, would be short. I am sure Amy will give an update later tonight. Thanks for your prayers.

Steve

Sunday, September 3, 2006 1:40 PM CDT

*****WED 9-6-06 8am UPDATE************ Just a quick note to let you know Mack's cardiology appointment was changed to Friday. All is well here. We are thoroughly enjoying the "lull". Hoping it lasts a long, long time!!! More on Friday after we see the docs. Love, Amy******

Amazingly, I don't really have much news to share on the medical front. Wow! I dreamed about entries like this! Mack has been feeling great, loving all of her therapies and enjoying the calm to this storm. Her ankle and knee pain persists, but for now... tylenol is doing the trick. We'll readdress this issue when we go downtown to Childrens on the 25th. This is when she is scheduled to get triple chemo in her brain, please continue to pray for protection from all the nasty side effects and that the chemo will be effective in destroying every last leukemic cell if there are any left. Heading to the cardiologist on Wednesday and I'll update as soon as we return. I should have immediate answers to many of our questions because most are based on her EKG. Please continue to pray for a normal QT interval. Let's see... now that she's in maintenance I guess its time to start some of her follow up appointments, I'm just so sick of doctors I've been putting it off. Besides cardiology she'll need to see Opthomology for her eyes... remember at one point, she had cataracts, most likely from the high dose steroids. As far as we can see without actually dialating her eyes... they have resolved, but the full exam will reveal those details. And she'll need to go back to Immunology as we continue to wean the monthly IVIG. Remember the immunologist felt she'd need this infusion monthly for the rest of her life... time will tell.
Lindsay's been feeling good and her heart has been seemingly stable. This spring will bring answers to many of the "unknowns" as she will have the long awaited for, much anticipated cardiac catheterization. It seems her doctors feel she may need surgery after that (sometime in the summer), BUT we've been told that before and then when they get in to her heart... they are "pleasantly surprised" and so we are praying desperately that this will be the case. I am SOOOOOOOOO not ready to embark on another heart surgery, BUT I know that if I'm lead down that path... God will give me what I need to survive the valley once again. When we started Mackenzie's myspace website, we added a slide show of Lindsay from many of her surgeries. I had not seen these pictures for many years. Boy did the emotions come flooding back. It is not a place I'd like to find myself again and as much as I feel like digging my heels into the ground and protesting, in my weakness, I will allow Him to carry me where ever He leads. His faithfulness has proven to be trustworthy. Totally non-dependant on the outcome of any of our circumstances... He continues to meet our every need and gives us the strength to endure and overcome adversities, drawing us closer to Him. The blessings we have received through our trials far outweigh the hardship themselves. I think so many people allow anger and bitterness to swallow them up, that they completely miss the blessings.
Not much else going on here. Tonight we are having several friends over for a friendly game of Texas Hold em. As long as I beat Steve (and Tim)... the night will be a success! haha! Thanks for your continued prayers and support for our family. We love you all! Much love, Amy
PS Next update Wednesday after our cardiology visit. Keep praying!

Sunday, August 27, 2006 7:32 PM CDT

*******WED 8/30/06 8pm UPDATE************ Just a quick note to let you know that we had a great check up at oncology clinic today. Everyone thought Mack looked great. She's been having knee and ankle pain... ankle pain from the vincristine and knee pain from the damage the steroids did. We may have to do an MRI of her knees in the future if it keeps up. Her ankles may improve a little once she's off therapy, but she'll always have a funny walk and weak ankles/feet. Meaning she'll never be an olympic runner. Oh well, there much greater things in life!! Next week we see the cardiologist for Mack. This will be a big appt. to give us more info into whether or not Mack's heart issues were related to all of her chemo and electrolyte issues or if there are seperate heart issues that will need to be addressed. Praying, praying, praying her EKG looks good. Specific prayers for a normal QT interval. I laugh thinking about you guys asking God for things like a normal QT interval. Good thing He knows exactly what a normal QT interval is!!!! The following week I will give chemo again at home and then two weeks later the dreaded chemo in her brain (scheduled for Sept 25th), but not to early to start praying for!!! Sorry to cut short, but five little girls are waiting for me. Love you all! Amy

Hooray! We made it through the weekend with all the "IV stuff" and are done for another two weeks. Mack made the most of it despite having her "tubies" in and getting chemo. Just got her lab results and everything is looking good. Her WBC and ANC seem to be just where they want them to be so no increase in her chemo for now... at least as far as I know, official word will be from her doctors tomorrow. I spent most of the weekend cleaning out every closet, cabinet and dresser in the house. Mackenzie was running the neighborhood with the girls and loving every minute of being outside. I can't believe she's almost four. I feel like we lost so much of her childhood development to illness. One minute she was an infant and now she a grown up three year old. There was no in between stages...they were swallowed up by the devastating effects of cancer. Sometimes I just watch out the window in awe, seeing her do "normal" kid things. I can't believe how far she's come and yet, still has no guarentees. There is no more security in the way she looks, acts or how well she is currently doing. Our lives could be turned upside down again on the turn of a dime, at any minute of any day. It truly is the greatest test of walking by faith... living with that "in your face" awareness of our mortality. We have learned to trust in His care with every breath we take. It hasn't been an easy lesson to learn, but I can truly say that His love is enough. It has carried us through so many storms over the past eleven years and His faithfulness in meeting our every need has been amazing. Sometimes the way we live seems surreal. If I knew our lives were going to look like this, I never would have imagined that we would have so much joy and happiness when our lives are engulfed by uncertainty. I would have thought we'd be prisoners to sadness and worry. He enables us to break free making the unheard of... possible. A few journal entries ago, I was writing about being on the mountain top and seeing the beauty of the valley when you look at it in its entirety. The beauty comes from seeing His love and provision wrapped around our pain and suffering. Imagine how ugly the valley would look without Him...looking back and seeing only the barren despair of sadness and sorrow. I am so grateful for His love for us and His relationship with us which has given us the strength and courage to survive.
This week should be a full week as Mackenzie's teachers are returning. She has to see the oncologist and the cardiologist this week (I think). Please continue to pray for healing and protection for Mack and all the kids. Believe it or not, I've had to retype this entire entry by memory three times now because it's just "disappeared" into cyberspace. Very strange and frustrating, but I'm determined to bring you all the message of HOPE by sharing our experiences and all the things we have learned along the way!!!!! Thanks again for sticking by our side, through good and bad! We love you all soooooo much! Love, Amy

Thursday, August 24, 2006 4:06 PM CDT

***added a few new pics****

It's been a whirlwind of a week. I feel like a cat chasing its tail... working hard and getting nowhere. I thought I'd have time on my hands once the kids started back to school, but somehow I'm busy every minute of the day. Mackenzie's had a great week. She's looking forward to all of her teachers coming back to the house starting next week. She will start the year with three days of speech, two days of physical therapy, two days of preschool, and one day of occupational therapy. Our annual conference will be in October and things may change after that. Expecting our delivery from home health tomorrow. I'll access her port and give her the monthly infusion of IVIG. Her doctors decreased the dose with hopes of weaning her off the IVIG over the next several months. Time will tell. Her immunologist thought she'd need it through therapy and possibly the rest of her life. She never seems to follow the book, so who knows? The thought of getting her off that support is very exciting. It's a long infusion and she doesn't like it. Not to mention the fact that its $3,800.00 per dose. Sunday, I'll draw labs again. Praying her numbers are where they should be. I'll also give her the chemo infusion and additional oral chemo. I feel like we just did this... two weeks goes by waaaaay too fast!!!
Lindsay was having some unusual chest pain the other day. Not sure what that is all about, but we'll keep a close eye on her. Other than that... all is well!! Kids are loving school, we'll see how long that lasts.
Our prayer requests remain the same... healing of Mack's bone marrow and spinal fluid and the destruction of any abnormal cells. Protection over all her organs... especially her liver from the chemo and her brain from the effects of cranial radiation. You guys have been an amazing support for us and we want you to know how much we love you all! One day at a time...we're getting there...TOGETHER!!!! More on Sunday after I hear lab results. Much love, Amy

Sunday, August 20, 2006 9:22 AM CDT

As usual, no news is good news in our home. We have had a great weekend just bummin' around. I can hardly believe the summer is gone and the kids start school tomorrow! Funny how at the end of the school year, I can't wait for summer, leaving the school schedule behind. And then at the end of summer, I can't wait for the routine of school again. The girls are all VERY excited! Things sure will be quiet around here with just Mack and I. I wonder how Mackenzie will cope without the entertainment of all of her sisters. She has really become a part of their circle this summer... finally, healthy enough to keep up. Praise God!
Did anyone notice her hair in the pics? It's growing in so fast(and thick!). I love it! She's got the crew cut goin' right now so everywhere we go, people are like, "hey, little fella" and her standard response is, "hey, big guy" no matter their gender. She's got Lindsay's sense of humor and Lexie's wittiness about her. She's a riot and we have thoroughly enjoyed seeing her personality emerge!
Just oral chemo this week and then labs and IV chemo next Monday. I can't think much past that, but I think we still have several weeks before the dreaded chemo in her brain. Please continue to pray for healthy bone marrow and spinal fluid, protection of her liver from the toxic effects of so much chemo, destruction of any leukemic cells that may be hiding out somewhere undetectable and appropriate growth and development.
Not much else for now. Thanks for continuing to PUSH and PULL, hoping we haven't exhausted you all! Much love, Amy
PS We've added a link above to Mack's MySpace. This was created to keep all of Ace's highrollers on the "in" regarding her crush. This caringbridge page will continue to be the source for all of her updates. There is a good video of all Lindsay's past surgeries under the "Heroes" section, but the rest of the page is just Mack and Ace.

Friday, August 18, 2006 5:53 PM CDT

Well, I wasn't going to post another entry until Sunday, but I just wanted to let you know that Ace has posted Mack's picture on his myspace. The address is www.myspace.com/aceyoung. I think you have to register to view the pictures (I did) , but then again, I'm soooo NOT saavy at this webpage stuff. Once the page comes up, near the top left you can click on "view my pics" just under Ace's picture. Scroll down and you'll see Mack and Ace. It looks as if you can leave a message for him regarding that picture, but I couldn't figure it out. If you have a moment and you can figure it out, let me know and... help us say thanks by leaving him a post. Just as I was overwhelmed by all his fan support for our little Mackie, let's overwhelm him with Mack's fans!!!!! He could be in for a surprise. More again on Sunday. Love, Amy

Tuesday, August 15, 2006 9:03 PM CDT

*********Friday 8-18-06 8:30am UPDATE********Just a quick note to let you know that all is well in the Johnson home. Last night we were able to attend an event for Bear Necessities, the pediatric cancer foundation who enabled us to meet Ace. It was wonderful to be able to thank all of those involved in making Mack's dream come true, and giving us an incredible memory to hold on to. She was in rare form, giving high fives and tearing up the joint. Her smile is infectious and her personality is radiant. We had many good laughs.
She continues to take her oral chemo everyday, but no scheduled IV chemo until a week from Monday. The girls start school on Monday and all of Mackenzie's teachers will be coming into our home again this year. She will continue with physical therapy, occupational therapy, speech therapy and preschool. One busy little girl! More on Sunday. Much love, Amy**************

I've been sitting here at the computer, staring at a blank screen. Thinking back on the days when I couldn't even see the screen because my eyes were so welled with tears when I wrote. The tears would actually pool on the keyboard and the lump in my throat was so big I couldn't even swallow. I just looked back in the journal from a year ago today and at that time, we were preparing for Mackenzie's first brain surgery. And when I read two years ago today, I was pleading for your prayers as Mackenzie's vomiting and diarrhea was so severe that IV nutrition and fluids along with electrolyte replacements were barely keeping her alive. It's amazing how much joy has replaced our sorrow. Our hearts are so full of thanksgiving these days as Mackenzie continues to do well and Lindsay's heart is seemingly stable. We've been amazingly blessed this summer and praise God for this reprieve.... the gift of "living" again. I'm still learning how to drink in the moments of today and not worry about tomorrow. After all we've been through with Mack and Linds it's hard not to wonder what the future will bring. Just leaving it all in an open hand and trusting Him.
Mackenzie's labs looked great yesterday. Actually, a little too good, but they don't want to increase her chemo yet. Going really slow on her increase after she bottomed out her counts last month. She actually had three different chemo's yesterday, but bounced back and was spunky all day today. It's so fun to see her running around and trying to keep up with all the older girls. Not much on the agenda other than trying to get everyone ready for school which starts on Monday.
We are so grateful for everything you guys have done for us and continue to do. Your love, prayers and support have carried us through more than I imagined we would ever have to face. Being on the mountain top now, I can see the whole valley and crazy enough... it's beautiful. Amazing how much good can erupt during trials and hardship. Praying we can hold on to this perspective!!!!
Much love,
Amy
PS Funny story... the girls and I were on our way to the store today and they were quite squirly... bickering with eachother. You can imagine who was at the root of the problem... Lexie. I was just about to referee when Lindsay shouts out... "Lexie, Ace thinks we are wonderful... don't ruin our reputation!" I couldn't help but burst out laughing!

Sunday, August 13, 2006 11:41 AM CDT

********THANK YOU TO ALL OF ACE'S HIGH ROLLERS WHO HAVE POSTED IN THE GUESTBOOK AND SENT US E-MAILS. WE HAVE BEEN OVERWHELMED BY YOUR OUTPOURING OF SUPPORT FOR OUR LITTLE MACKENZIE. (I must admit we were a little taken back and in shock that our story and pictures spread to the web within hours of being posted on this site). YOU GUYS ARE AMAZING (and a little crazy), BUT IT'S ALL FOR A GOOD CAUSE. ACE REALLY IS A GREAT GUY! THANK YOU ALL! As for us, it has been a little difficult to jump back into the routine of chemo and meds after having such a wonderful weekend and leaving our reality behind for a day. I drew labs this morning (still waiting for the results) and gave Mack her IV infusion of chemo. Normally, she tolerates this quite well, but for whatever reason, today she wants to lay on the couch and is complaining of her "tummy hurting". Her time with Ace this weekend has only intensified her crush. I heard her having a one way conversation on an old cell phone and it went something like this... "Hi Ace, you take me to da moubie (movie)? Oh, dood (good). You det me poptorn and water?" She's killin' me! I'm not sure if I'll ever get the "Ace loves Mackenzie" t-shirt off of her. She's shed many tears while I've tried and of course, I caved in. Her speech therapist will be here this afternoon and at least I can bank on one thing... she'll be willing to talk... ALL about Ace, or as she affectionately refers to him as Acey Boy . Hopefully I'll receive her lab results soon and quickly update you on that later today. Oh, I forgot to tell you... Lindsay's cardiologist called last week and he did present her at cath conference. They reccommended doing a cardiac cath, but gave us the option of holding off for six months. After much prayer, we have decided to wait. Not quite ready to go down that road yet. Please continue to pray for healing and stability for both Lindsay and Mackenzie. We are so thankful for all of your prayers and support!!!!! Much love, Amy*************************

What a night! We had such a fabulous time at the concert, it will definately go down as one of our all time favorite memories!!! I wish I could have video taped the entire evening... just savoring every moment. Mackenzie and all the girls were so excited and had the time of their lives! When we arrived, the kids were going crazy over the pictures and posters for sale, so of course, they each had to pick up some memorabilia. We got to our seats just in time and as soon as the American Idol music began playing, Mackenzie was literally shaking and screeching in her seat. She was waiving her picture of Ace in the air, jumping up and down and kissing the picture almost the entire time. When Ace came out on stage, Mack was screaming with excitment, "dares my boyfwend!" She had the binoculars glued to her eyes and just couldn't get enough of Ace. She kept asking if she could go down by him... while he was singing on stage. I've never seen anything quite like this in a three year old! After the concert our time with Ace was amazing! As soon as we got back to the room where the meet and greet was... Mackenzie made a B-line for Ace and ditched us all. There were quite a few people in the room and she weaved her way through all the legs and went right up to him. I couldn't even see where she had gone. Ace sat with the girls talked, then gave Mack a present. The smile on her face was so huge when she pulled out his beanie and a t-shirt with a picture of him on it, that says, "Ace loves Mackenzie". She wanted to go see a movie with him, so he said, "ok, I guess I owe ya a movie". I'm sure she'll be asking me everyday when her and Ace can see a movie together. As I write, she just came in with her t-shirt and beanie begging to put them on. I'll have to take a picture and post....it is waaaay toooo cute!!!! Overall, I have to say my expectations were exceeded. Clearly, I understand why Mack is so drawn to Ace... she saw his tender heart way before any of us did. More later. Love, Amy
PS... I forgot to tell you a "Lexie" story. During the concert, Lex kept trying to steal Mack's picture of Ace. I asked her, "didn't you get a picture of your own?" She said, "yeah, I got a picture of Chris, but Lindsay said she's gonna sell it after Chris signs it." I was cracking up!

Wednesday, August 9, 2006 7:18 PM CDT

*****8:30PM update******CHECK OUT MACK ABOVE IN CONCERT ATTIRE, SHE CAN'T WAIT TO MEET ACE!!!************


The excitment level in our home continues to rise with each day approaching the American Idol concert!!! We will be leaving home in a limo around three in the afternoon, heading up to Milwaukee for dinner and then the concert. After the concert, we will attend a "meet and greet" with all of the American Idols and then spend some much anticipated time with Ace. I asked Mack today what she wanted to do with Ace and she told me, "ummmm, see a movie." I was cracking up. She has no concept of what will transpire.... hoping she is not disappointed.
Lindsay had her stress test this afternoon and did great. Although she didn't have much stamina to stay on the treadmill very long, her heart was steady. Her cardiologist is supposed to be presenting her case at a cath conference this evening to see what the recommendation would be from all the guru's. Dr. Dubrow said he'd call tonight, but I'm not holding my breath... he's leaving on vacation in the morning and they had lots of kids to present. My guess is that they won't even get to Lindsay's case and I won't hear anything from her cardiologist. Her liver enzymes were elevated, most likely from the medication she began on in April. Her cardiologist was going to speak with her electrophysiologist to see if anything needed to be done other than monitor it closely. Overall, I'd say it was pretty good news.
Well, there is tons to be done between now and Saturday. I'll write again on Sunday after the concert and hopefully have some pictures to post. If by chance I hear from Linds doctor, I'll post earlier. Thanks for continuing on this journey with us. I've actually lost count, but I think Mack only has 8-10 more months of chemotherapy! Keep praying! Much love, Amy

Tuesday, August 8, 2006 9:40 AM CDT

Boulder was a great vacation after our vacation!!! It was such a nice break for me and we all thoroughly enjoyed ourselves. We were biking along Boulder Creek, hiking in the mountains, pampered at the spa, along with lots of great food and shopping. Steve did great with the girls at home. Now our focus has quickly shifted to the much anticipated American Idol Concert. The countdown has begun... four more days!!!! I don't think I've ever seen the girls more excited. Mack tells me every day how many days until she see's Ace. I'm cracking up at this SERIOUS crush she has, listening to her talk about giving Ace a kiss. And how she refers to him as "her boyfwend". The organization that has arranged for Mack to meet Ace called while we were out of town and informed us that Ace got a copy of the newspaper article and loved it. And that he is looking forward to meeting Mackenzie. Should be a night to remember!!!! We are so grateful for the distraction Ace has created and the joy Mack has when she listens to him sing.
On the medical side... everyone has been doing well. Lindsay has her stress test on Wednesday and we ask you to continue to pray for good results and heart stability. Although we haven't fully made our decision regarding the cardiac cath... we are leaning towards waiting until next summer and re-evaluating then. Sunday I'll draw Mack's labs and give her the IV chemo and additional oral chemo providing she's tolerating the increase dose of chemo and her labs are still stable. Please continue to pray for healing and destruction of any lingering leukemic cells. Not much else for now. More on Wednesday night after Lindsay's test. Much love to you all, Amy

Saturday, August 5, 2006 10:43 AM CDT

Good morning. Writing from Boulder, CO and it is BEAUTIFUL here!!!! Here with my mom, sister-in-law, aunt and two cousins for a girls weekend away. It's been so relaxing and rejevenating! Steve is holding down the fort at home with all five girls. Mack has been feeling great, getting stronger everyday. Next weekend I'll draw labs again and give her chemo IV. Lindsay has a stress test scheduled for Wednesday, please continue to pray for good results and wisdom and guidance in our decision regarding the cardiac cath. Not much to report other than all is well!!!! Wow, It's wonderful to be at a point where we can say that! Don't know what tomorrow will bring, but today is good and for that we are grateful!!!!!! Heading home tomorrow afternoon. More when I return. Love you all! Amy

Monday, July 31, 2006 5:04 PM CDT

********8/1/06 5:30pm UPDATE**********Quick note to let you know that Lindsay's appointment today went pretty well. Her heart function looks great from the echo, but they cannot visualize the homograph that they used to connect her heart to her lungs. We know it has some degree of narrowing, but we don't know how much and the only way to determine that is through cardiac catheterization. In most people, this is a very routine procedure, but with Lindsay's heart, it carries much risk. Her doctors, and ourselves are torn as to whether or not this is the right time to go in and see exactly what is going on. It's all about weighing the risk vs. benefit because we all agree the results would be helpful. The doctors are leaving it in our hands. If we want to wait... as long as we want, we can. This is another one of those grueling decisions for me... one that I will have to pray over A LOT, and I imagine I will need to exhibit much patience again as I wait on the Lord and trust Him to guide and steer our decisions to reveal His plan of care for Linds. My moment to moment "humaness" has me thinking "yes" one moment and then "no way" the next. I hate the unrest and turmoil these decisions stir up on the inside of me. The burden of that looming decision is heavy. I also know that if we move forward with the cardiac cath... it WILL be the beginning of many things to come, most likely a major heart surgery and I'm not sure I'm ready to go down that path. Please pray for God to reveal His plan and make it very clear to us how to proceed. Overall, it really was a good check up... just wish the Ace of Spade wasn't thrown on the table. I'll keep you posted. Love, Amy********************

****8/1/06 NEW PICTURES UNDER "VIEW PHOTOS"************

We made it home! I can't believe four weeks came and went so fast. We had a wonderful time away, but it does feel good to be home. Mack had her oncology clinic appointment today and all went well. The nurses and doctors thought she looked great and her blood counts were actually too good. We are increasing her oral chemo dose tomorrow, but she's still at a lower dose than her protocol calls for. They are slowly increasing her back to her standard dosage after she had that bout of zero WBC and ANC for three weeks back in May/June. We are waiting for our home health delivery and I'll give her IVIG tonight or tomorrow morning depending on how late the delivery gets here. Then I can deaccess her port and she can be "free-free" again. Praising God for the current health of our family!!!!! Lindsay's big cardiac check up is tomorrow and I'm praying she's gets just as good of a report. She has been extremely tired and it's hard for me to differentiate if it's her heart or just all the activity, lack of sleep, change in schedule and extreme heat. Clearly, she has a reason to be tired, but this seems more than the external factors. She will also need blood drawn to check her liver function after starting the medication she was put on in April. She doesn't know about that part yet, and I'm sure she will protest!!! I haven't even attempted to unpack our bags yet... after arriving home around 7:30pm Saturday, we spent the day at my sister-in-laws parents pool celebrating my niece's birthday yesterday. And then today, I was downtown all day at Childrens. Mack's speech therapist came today and she was sooooooo excited to see Cynthia! She will continue with speech and PT and then in three weeks she will resume more PT, speech, OT and preschool. I think she will be lost when her sisters start back to school since Lexie will be in 1st grade and gone the whole day! Well, that's about it for now. I'll write again tomorrow when we return from Lindsay's appointment. Thanks for your continued prayers. Much love, Amy

PS My heart is heavy and burdened feeling the pain of so many families who have lost their child or are watching their child fight for their life. A little boy named Noah passed suddenly, a result from heart defects. His mom has been an inspiration and her faith is admirable. She recently shared the song below and a portion of her journal read, "This song is so beautiful and boy is it the truth. I feel like I've died to live. It's not fair but I know I'm being held and the thought of me in the Lord's arms brings me to tears. I know ultimately he could've stopped everything but this is how it was all meant to be. Somehow I'll make it and FOREVER I'll be with Noah again, what a blessed reunion that will be. I miss him terribly..." Please pray for all those who are hurting.... they are many!

Friday, July 28, 2006 11:16 AM CDT

Back at Hoorhays coffee shop. We've had beautiful weather all week and tons of fun with family and friends. Can't believe we are heading home tomorrow. Sunday will be busy unpacking and doing laundry and Monday I will be downtown all day with Mack for chemo. Please pray for good blood counts and healing of her bone marrow. She has been having the time of her life doing the "nestea plunge" in the lake and "cannon balls" off the dock. She has no fear. Tuesday I'll be back at the hospital all day again with Lindsay for her big cardiac work up. Wednesday everyone has ortho appointments and then I'm off to Boulder, CO on Thursday with my mom, sister-in-law, aunt and two cousins. We're headed to a spa in boulder until Sunday. This summer has been incredibly fun and we've been incredibly blessed. "Thank you Lord!!!!" Please pray for a good report for LIndsay on Tuesday. Well, better run, there are shops waiting for us... Thanks for keeping up with us. Love hearing from you all and am so grateful for all your prayers!!!!!!! More on Sunday. Love, Amy
PS Jane.... you are right, can't stand coffee, but I've found Chai!!!!! Love it! Love you too!

Monday, July 24, 2006 12:26 AM CDT

Really fast note... at coffee shop.... groceries in car melting. Having a great time, weather beautiful, kids skiing and tubin' non stop, Mack's doing great. Had diarrhea for 3 days strait... had to take poop over to the hospital, but everything is back to normal now... praise God! Thanks so much for covering us on this vacation. Can hardly believe we will be home in just 5 days. Gotta run. Love you all! Amy

Friday, July 14, 2006 10:20 AM CDT

****MONDAY 7/17 2pm UPDATE********* Quick update, as I'm at a coffee shop in Minoquoa... Kara - awesome job on the slide show!!!! You're a great web manager, are your fee's going up?!?! I love it!!!!! All is well here. Mack's counts were good last Thursday and we made it over to WI. She's been in the lake nonstop and lovin it! Will be here until the 29th. No computer access at the cabin, but will update again when we are out and about. Thanks for continuing to check in on us and continuing to pray for our family. We love you all! Love, Amy*********

♥Hi, it's Kara. I just wanted to let you know, I added a slideshow of pictures of Mackenzie. It's pretty cute. I hope you enjoy it! (And make sure you have your volume turned on - there's music!) Love, Kara♥

Just a quick note to let you know all is well. We got back to Onamia late last night and I drew Mack's labs, gave chemo this morning and dropped them off at a local hospital. Should have results later today, I'll keep you posted. Heading back to the pool today as it is supposed to be 93 degrees. Can't believe we leave tomorrow to head over to Wisconsin. These past two weeks have just flown by!!!!! Anyway... I was very productive at the Mall of America yesterday.... found a cute outfit for Mack to wear to the American Idol concert. Matching the outfit are a pair of funky gold high heels. Mack LOVES them. With her weak ankles... she's struggling to walk in them, but hey, she'll look good for her boyfriend!!!! Speaking of Ace, the article in the Daily Herald is in today's paper. I didn't realize, they actually interviewed Ace too! Although I couldn't find the picture, here's a copy of the article:

Ace of her heart

By Abby Scalf
Daily Herald Staff Writer
Posted Friday, July 14, 2006

Mackenzie Johnson has found her first “boyfriend.”

It’s Ace Young, one of the finalists on the hit TV show, “American Idol.”

Although the 3-year-old Wauconda girl can’t yet pronounce Ace’s name — she calls him “eight” — she loves to watch and hear him sing.

She asks to listen to her favorite song, “Father Figure” on her “American Idol” CD.

“When she saw a picture of Ace on the cover, she said, ‘Oh good, Ace.’ Then she gave the CD a big hug,” said Amy, her mom.

Now, thanks to Mom and a miracle, the two will meet in August.

For the Johnsons, watching “American Idol” has provided distraction during frequent medical crises.

Mackenzie was diagnosed with acute lymphocytic leukemia in January 2004. After initial treatments, her bone marrow responded well and showed remission.

Then in April 2005, the leukemia returned to her central nervous system. Her parents chose aggressive chemotherapy that ended in March, followed by cranial radiation.

Through it all, the family has been optimistic, but also realistic, says Steve, Mackenzie’s dad.

“We’re getting used to this lifestyle, never knowing what will happen tomorrow,” he said.

Amy, who began watching “American Idol” five years ago, said the show has sparked interest for all her girls, Taylor and Lindsay, both 11, Kali, 8, and Lexie, 6, and Mackenzie.

While in Cincinnati for radiation treatment, Mackenzie watched “American Idol.” When Young’s name was called at the end of the April 19 show, Mackenzie clapped. Amy had to explain he was voted off.

“Then Kali said, ‘You’ll never see him again.’ She burst into tears uncontrollably,” Amy said.

Out of desperation to comfort her, Amy told Mackenzie they would see Young this summer in concert.

“I locked myself into something, not sure what state we would have to do to or how much money we would fork out,” she said.

Amy was able to get eight tickets to the Milwaukee show for her family, but she realized Mackenzie may be disappointed. Sitting far from the stage, she may not see him as she does on TV. That’s when Amy remembered she held onto a request for a miracle.

Bear Necessities, a Chicago-based pediatric cancer foundation, grants miracles to children from birth to age 19 who have pediatric cancer and undergo treatment. The organization was formed in 1993 by Kathleen Casey in memory of her son Bear, who was diagnosed at age 3 with pediatric cancer and died in January 1993. The organization has granted 400 miracles this year, ranging from a cuddly toy to taking 30 kids to a Cubs game.

“From personal experience, it doesn’t take a lot to make things better,” Casey said.

Mackenzie was offered her first miracle, an indoor play set, when she was diagnosed with leukemia.

Caroline Pfister, director of programs and services at Bear Necessities, said they remain in contact with families. When Mackenzie relapsed, they contacted the Johnsons.

“We feel it’s important to provide a small miracle for them each time. It never gets easier,” Pfister said.

Amy said they held onto the miracle, not sure what to request. But after getting tickets to the concert, she asked Pfister if Mackenzie could meet Young backstage. Young said yes.

“I said to her, ‘Mackenzie, you get to meet Ace.’ She said, ‘I know.’ It was what she expected from the beginning,” Amy said.

For seven years, Young said he has gone with his brother to a children’s hospital on Christmas Day to go room to room and sing to children and their families.

Young said he’s a big fan of meeting kids who are underdogs and fighters.

“Mackenzie is definitely that at 3 years old fighting cancer,” he said. “I am happy to get the chance to meet her.”

When they meet backstage at the August concert in Milwaukee, Young said he wants to thank Mackenzie for letting him into their home each week and give her a big hug.

“She deserves it for getting over everything she has gone through and is still fighting,” he said.

Being so young, Mackenzie will not remember much of the treatment and what she’s gone through, Steve said. Going to the concert and seeing Ace will be something to remember.

“It will be one of her first best memories,” he said.


• Not much else for now.... please continue to pray for healing so Mack will have MANY, MANY more memories to make in the future! More on Monday. Much love, Amy

Saturday, July 8, 2006 8:31 PM CDT

****MONDAY 6:30pm uPDATE******** Just a quick note to let you know that the job with Humana didn't work out. Thanks sooooo much for praying for this opportunity and decision. As disappointing as it is, I'm confident that God has something else in store for me and it's exciting to see where He leads me. Not much else for now. Love, Amy*****************

Mack had her first water slide adventure today and loved it! Couldn't get back to the top fast enough. As soon as we splashed in the pool at the bottom of the slide she was screaming "lets do it again, mom!" We've been to the beach a few times and rummaging around at Steve's parents cabin. All the girls are "needing" a 4 wheeler like grandpa's. They love it! The weather has been beautiful, hot and sunny. Today was 95 and tomorrow is supposed to be even hotter. Planning on going to the pool at Izaty's resort. Kali's birthday is on Tuesday and we will head to Sara's for the night. Wednesday night going back to Minneapolis to stay with some college friends and finally..... the Mall of America on Thursday after a build a bear adventure in the morning. Nothing planned for Friday (yet) and then Saturday afternoon we're heading east to the cottage in Wisconsin. Can't believe how fast the time is going. Praising God for Lindsay's heart stability... no arrythmia's since the fourth of July. Mack is still fighting her viral thing... coughing and blowin' her nose like crazy. Seems like it's finally beginning to plateau. Thursday I will be drawing labs and taking them to a local hospital and also giving Mack IV chemo. Please continue to pray for good blood counts, healthy bone marrow, permanent remission, and protection of all her organs. Also, continued prayers for my job opportunity... that God would lead me in the direction He wants me to go. I still have not heard any word since the interview... I'm hoping to hear something this week. Keep praying as we continue to walk by faith!!!! Everyone else is doing well. Thank you so much for continuing to pray for all of our requests. More again in a few days. Much love, Amy
PS THANK YOU KARA!!!! THIS SONG IS THE STORY OF OUR LIFE AND HOLDS MUCH MEANING TO US! LOVE YOU!

Wednesday, July 5, 2006 8:53 AM CDT

*****Thursday 8am UPDATE****** Just wanted to say thank you so much for continuing to pray for my job interview last week. I still have not heard any news, but I am so grateful for all of your prayers. They have equipted me with peace, knowing that God will show me His ways for my life. And without a doubt... His ways are best. I'll keep you posted when I have any news. Also, Mackenzie was up most of the night last night coughing like crazy. Had to give her two nebulizer treatments in the night. She continues to have lots of congestion in her nose. Her lungs sound nice and clear and it appears to be mostly upper airway junk. Please continue to pray for healing of this virus and that God would give Mack's body the fighting ability it needs to clear the congestion. Also for a hedge of protection to shield her from all the new things her body will be exposed to while we are away. She's been having a great time despite the congestion and we are praying it doesn't evolve into anything more. Lindsay's heart was stable yesterday... even before, during and after the 4 wheeler ride with grandpa. "Thank you, Jesus." Heading over to Steve's parents cabin today. I hear there is shopping about 15 minutes away :) More tomorrow. Love, Amy************************

Good morning from Onamia, MN. We made it to the twin cities on Sunday and stayed with some college friends for a few days. Mackenzie has been fever free ever since we left home and feeling well. The kids have been swimming every day and enjoying the change of scenery and constant activity. Lindsay had an arrythmia on Monday for about 4 hours and then again yesterday for about 8 hours. Not sure why her heart seems so irritable, but we are trying our best to avoid the ER or any hospitals!!!!! Please pray for her heart to stablize and remain in normal rhythm. Steve's got golf lined up almost every day this week, so I think that puts me in the clear for a long day at the Mall of America. It feels wonderful to be away and enjoying our time with eachother. Grandpa now owns a four wheeler so the kids are hyped up for a ride. No major plans on the agenda, but somehow we'll keep busy, we always do. Please continue to pray for Mackenzie... specifically healing of her leukemia and protection and saftey while we are away. More again on Friday. Much love to you all. Amy

Sunday, July 2, 2006 1:47 PM CDT

Just a quick note to let you know that we are heading out. Mack's last fever was at 3am... almost 12 hours. Still on fever watch, but continuing to pray and trust that God will keep watch over her and protect us all while we are away. Please continue to pray that He would give Mack's little body what ever it needs to fight off this virus and that He would protect her from any other germs that may cross her path while we are away. Praying for a "hospital free" vacation. Thanks for sticking by our side... amazing how things change from hour to hour in this house. I'll update again tomorrow or Tuesday. Hope you all have a wonderful 4th of July. Much love, Amy
PS If you remember, I'd also appreciate prayers regarding the job I interviewed for. Leaving it all in His hands and trusting that He will lead and guide me as my heart longs to be obedient to His direction for life. I probably won't hear anything for another week or so, I'll keep you posted. Thanks!

Thursday, June 29, 2006 5:24 PM CDT

*****9pm UPDATE******* Just walked in the door from the ER - UGH! Hours and hours of waiting, I can hardly stand it. Praising God for Mackenzie's good counts that are allowing us to "fever at home". Spoke with our oncologist and she said as long as there is no change in her status, we can just treat the fever with motrin/tylenol because it's probably viral. Blood culture is cooking... those take a day or two to grow if she has an infection. Hoping to still head out of town tomorrow or Monday depending on how Mackenzie is doing. I got ZERO packing done so I still have a lot to do before we leave and frankly I'm exhausted right now so I think I'll just hit the sack. Please continue to pray for healing of Mack's cough, cold and fever AND a hedge of protection to surround our family. More in the morning. Love you all. Amy************

*****SAT 1pm UPDATE***** Well, as usual, issues arise as we try to head out of town. It's almost comical how predictable the attacks have become. But that doesn't make it any less stressful or irritating. Mack woke up this morning with a 101.2 fever. She's still fighting her cold... cough and runny nose and we are praying it is all just viral. Time will tell. So, here we are, back on fever watch with anymore fevers sending us to the ER. Please pray for the fever to resolve and for our family to leave for our vacation tomorrow as planned. Still dependent, still trusting and still leaning on Him. More later. Love, Amy****************

Thank you for praying for Mackenzie's clinic visit today... she did sooooo well. Taylor and Kali decided they wanted to go and Mack was telling them in the car that it was "no owies, just pukies". She really only had one bad puking episode... felt kinda lousy for an hour or two, but seems to feel good now. Praise the Lord. What a blessing! In the past, she has been violently ill for 6 to 8 hours before passing, so this was a big improvement. ALSO, PRAISING GOD FOR A CLEAN SPINAL TAP WITH HEALTHY CELLS and good blood work (wbc 2.6 and ANC 2100)!!!!! It's hard to take in such rich blessings! He is so good and we feel so undeserving of His amazing grace. Wow!
Have a busy couple of days before heading out on Sunday. I'll still have access to the computer for most of our vacation and will continue to update. Please continue to pray for healing and protection for Mackenzie, emotional healing for the other girls and lots of good family times together. Also, continued prayers for the job I interviewed for... that His will would be revealed. Trusting Him for ALL of our needs! I'll keep you posted as I hear anything.
Not much else for now.... we are so grateful for all of your love and support. Can't say thank you enough!!!!! More on Sunday before we leave. Sending many hugs to each of you.... love, Amy

Tuesday, June 27, 2006 8:17 PM CDT

The interview was grueling today.... long and intense! It was good to stretch myself and I'm glad I went through the process. I got no feedback on the interview so I have no idea whether or not they think I'd be a good fit for the job. Won't hear anything for a couple weeks as they continue their interviews. Please continue to pray for God to open or close the door according to His will. I'll keep you posted.
Mack's energy seems to be returning and it's great to see the spunk in her step. She's sleeping less and engaging in more and more play. The "fuzzies" are growing in nicely. She continues to cough, but it seems to be loosening up. Please continue to pray for healing of her cough. Going to clinic on Thursday for the chemo in her brain and IV chemo in her port. Please pray for protection from all side effects and tolerance to the medications. They will also test a sample of her spinal fluid and blood... continue to pray for healthy cells!!!!!
Heading north on Sunday. Looking forward to some fun family times. Asking for your continued prayers for protection while we are away. Don't know what we would do without all of you!!!!!! Well, better go get a few things done around here. More on Thursday after we return from clinic. Love, Amy

Thursday, June 22, 2006 5:43 PM CDT

Mack's counts are improving...wbc 1.9 and anc 870. We're resuming chemo this evening in lower doses. Going to clinic next Thursday for the triple therapy in her brain and IV chemo in her port. Not looking forward to seeing her get so violently ill. Please continue to pray for mercy and grace and protection from the horrific side effects of chemo. Also, healing of each individual cell in her body, and increased energy and strength. Finally beginning to see the slightest bit of "peach fuzz" growing in on her head and its so exciting. Mack's been couging now for a few days and it's seems to be getting a little worse. Of course this is always a concern during "fungus season". Please pray for protection of her lungs and healing of whatever it is that she is fighting. I've been looking into a nursing job that I could do from home with an insurance agent and actually have an interview next Tuesday downtown Chicago. I would greatly appreciate your prayers for wisdom, guidance and clarity on this opportunity. My heart's desire is to follow His plan for my life and sometimes it is difficult to discern exactly what that is. Praying that He will open and close doors as to lead me in the right direction. Seems like this door is an incredible opportunity, but don't know if it is the right timing. I certainly don't want to embark on something that will bring more stress and aggravation to my life or get into something that's over my head. And at the same time, it seems like the job description is something that suits me well and the opportunity was one that just "crossed my path". It's always exciting to see where God leads you. Anyway, I could really use your prayers as to what is best for our family. Not much else for now... I'll update again on Tuesday after my interview unless something transpires before then. No news is always good news at our house. Thanks for your continued support. Much love, Amy

Tuesday, June 20, 2006 8:22 AM CDT

Good morning. Things are quiet here and I thought I'd let you know that all is well. I'm anxious to recheck Mack's counts on Thursday to see if her numbers are finally rising. The further away from radiation we get... the better. I'll be so glad when I see the spunk back in her step!!!!! Yesterday we went swimming... the water was 95 degrees, the weather was beautiful and Mack loved it. She was very tired, and had to take a nap in the shade, but woke up ready to do a "cannon ball". Her version of "cannon ball" is stepping off the lowest stair into the pool. Her color is looking better, so I'm hoping no blood transfusion will be needed this week. Also hoping to resume chemo if her white blood cell count and ANC are better. Not much else going on... Mack's at my side begging for a waffle so I better go get her some breakfast. Please continue to pray for healing of every cell in Mackenzie's body and protection from all infections. More on Thursday after I get the lab results back. Much love, Amy

Saturday, June 17, 2006 12:37 AM CDT

Sorry for not updating for a few days... I ended up driving up north to the cabin and spending a few days there with the girls and my mom and dad. Steve stayed back to work at basketball camps and enjoyed the quiet at home. Drew labs in Wisconsin and Mackenzie's counts are still lagging. Her white blood cell count was 1.0 and her ANC was 380... better than last weeks "0" and "0", but still leaving her very susceptible to germs. Her hemoglobin has been dropping and she may need to head downtown for a blood transfusion at the end of the week - time will tell. She's had no chemo now for about ten days and unfortunately will have to take another week off. Please pray for her bone marrow to recover and build reserves again so we can eliminate these "breaks" in her chemo. It is not optimal for long term remission to have time off chemo, but we also realize that nothing can change the number of days that God has gifted her with here on this earth. His plan is perfect and we continue to cling to His promises and plead with Him for healing of her little body. Despite her low counts and the effects of cranial radiation she has been feeling pretty good. She continues to tire easily and requires more sleep, but while awake, she's happy and playful and for that we are grateful! She has been eating better and not complaining of a stomache ache every day, but this has been a direct correlation with the break in her chemo. We'll see if those symptoms resume when she starts the 6-TG daily again. Praising God for keeping her and all the girls safe and healthy while we were away. They really enjoyed their time with cousins and up north at the cabin. Planning to lay low for a couple weeks before heading out for the month of July. Spending a few weeks in Minnesota with Steve's family and college friends and then back to the cabin for a couple weeks. Still need to arrange labs and IV chemo while we are gone, but hopefully it won't be too complicated. The more "freedom" we get from the captivity of illness, the more we desire. I long to free my mind from medication schedules and doctor appointments. Praying, praying, praying that we will be able to enjoy raising a cancer-free little girl with the ease of "normal" living. July will mark 15 months of remission since her relapse. I recall our oncologist saying that the first remission is usually the longest. Others have disputed that, but it continues to stand out in my head for some reason. I must have some degree of post traumatic stress syndrome with all we've been through in the last eleven years. I have the strangest thoughts and visions emerging that I wish would stay supressed. I've already lived the horror, and my mind wants to keep replaying it. I'd rather forget the bad and move forward. Or at least dwell on God's faithful provisions, mercy and grace. Those are the things I never want to end! He has been so good to us... our rock and our fortress! I know we are undeserving of His amazing grace, but my heart overflows with thanksgiving and gratitude. I remember hearing a cancer survivor speak at some event. I don't even remember the type of cancer he had, but I remember it was bad and the doctors had given him no hope for a cure, numbering his days. His life was empty and meaningless before it all changed at the drop of a dime. During the course of his treatments, he found God and gave up control of his life. His last statement was so profound, but something I could soooooooo relate too. He said, "Ultimately this disease called cancer that was meant to take my life, was in the end, exactly the thing that saved my life". He was a changed man... and so are we!!!!! Please continue to pray for bone marrow recovery, healing and destruction of any remaining leukemia cells in Mack's little body. More on Monday. Love, Amy

Tuesday, June 13, 2006 2:15 PM CDT

Just a quick note to let you know we made it back from Vegas and we had a fabulous time. The "people watching" was like none other, the weather was beautiful and the shows were outstanding. We thoroughly enjoyed ourselves and are so thankful for the much needed break. The girls are at the cabin with my parents and are having a great time also. Mackenzie has been feeling great and living it up at Papa's Cottage. We are so appreciative of all your prayers over the last few days. It's by His grace that all has remained stable and we were able to rest and relax while we were away. Even in our vulnerability we were able to put our guard down and rest in His care. We flew in the wee hours of the night last night so there's more sleep to catch up on before heading north tomorrow to get the girls. Thank you, thank you, thank you for the gift of your prayers. I do believe they contributed to the wonderful time and many memories we were given while on this vacation. So thankful for you all! More tomorrow. Love, Amy

Thursday, June 8, 2006 7:09 AM CDT

*********4:30pm UPDATE*********** OK, SO I'M SENDING OUT THE SOS BEFORE WE EVEN LEAVE. JUST GOT MACK'S LABS BACK AND HER WHITE BLOOD CELL COUNT IS ZERO. THIS MEANS THAT MACKENZIE IS AT VERY HIGH RISK OF CATCHING THINGS, ESPECIALLY FUNGUS IN THE LUNGS. PLEASE PRAY FOR PROTECTION FROM ALL GERMS AND MOST IMPORTANTLY FUNGUS. I'M HAVING A VERY HARD TIME LEAVING WITH MACK IN SUCH A FRAGILE STATE. I CONTINUE TO HAND IT OVER TO HIM HOURLY BECAUSE SOMEHOW I KEEP GRABBING IT BACK AND FIND MYSELF BEGINNING TO FRET OVER ALL THE "WHAT IF'S". I'M TOTALLY TRUSTING HIM, CONFIDENT THAT HE IS CAPABLE OF HANDLING ALL OF MACK'S NEEDS AND MY NEEDS IF SHE WERE TO END UP IN THE HOSPITAL WHILE WE ARE GONE. SHE HAS BEEN VERY TIRED TODAY... SLEEPING MOST OF THE DAY. ANY FEVER AT ALL WILL BE AN AUTOMATIC ADMISSION TO THE HOSPITAL. MY PARENTS ARE SUPPOSED TO BE TAKING MACK TO A WEDDING TOMORROW NIGHT IN MICHIGAN. WE'VE ALREADY SCOPED OUT THE HOSPITAL THERE. PLEASE PRAY THAT SHE WILL STAY FEVER FREE THE ENTIRE TIME STEVE AND I ARE AWAY. ALSO, PRAYERS FOR QUICK RECOVERY OF HER BLOOD COUNTS. ONLY SUPERNATURAL INTERVENTION WILL BE ABLE TO BRING HER COUNTS UP QUICKLY. PLEASE PRAY FOR A SURGE OF ENERGY AND STAMINA THAT ONLY HE CAN PROVIDE AND A SHIELD OF PROTECTION THAT WOULD WITHSTAND EVERY GERM, BUG,FUNGUS AND ANY OTHER THREATENING MICROSCOPIC THING THAT WOULD CROSS HER PATH. I FEEL LIKE BURSTING INTO TEARS IN OUR VULNERABLITY BUT KNOW THAT GOD IS TENDER AND HIS LOVE IS CAPABLE OF SUSTAINING US. PLEASE PRAY FERVENTLY FOR OUR FAMILY THIS NEXT WEEK. I WILL DRAW LABS NEXT THURSDAY BUT THEY DON'T EXPECT MACKENZIE TO RESUME CHEMO FOR A FEW WEEKS WHICH IS ALSO DISCOURAGING. MY HEART FEELS SO HEAVY, BUT I WILL DO MY BEST TO LEAVE IT ALL IN HIS HANDS AND ENJOY MYSELF TO THE BEST OF MY ABILITY WHILE WE ARE GONE. ONE LAST PRAYER REQUEST SPECIFICALLY FOR PROTECTION AGAINST ANY OF SATANS ATTACKS ON OUR FAMILY AT THIS TIME OF WEAKNESS. BETTER RUN... STILL HAVE SO MUCH TO DO BEFORE WE LEAVE IN A COUPLE OF HOURS. LOVE YOU ALL SO MUCH! AMY

Just a quick note to let you know that Steve and I are getting ready to head out tonight. We would really appreciate your prayers for safe travel and stability at home for my mom and dad. Mackenzie has been feeling better and eating a little more. Checking her counts again today, but her chemo is being held for a week regardless of the results since they were so low last week. Lindsay had another short arrythmia yesterday, but converted on her own. Everyone seems to be doing "well" by the standard of our home. :) Mack will be going to a wedding in MI with my parents tomorrow and the other girls will spend the night with my brother. Then all the girls are heading north on Saturday with my parents to their cabin. Praying for good weather and a fun time for them while we are gone. I won't have access to a computer, so I won't be able to update until Tuesday. If we are in need of an SOS update, I'll have my "web managers"... ie (Heidi or Kara) get the word out. No news is good news. Thanks again for covering us in prayer.... especially while we are out of town. Love to you all, Amy

Sunday, June 4, 2006 3:52 PM CDT

****Tuesday 11am UPDATE****** Just a quick note to let you know our clinic visit yesterday was uneventful. Mackenzie's fever has been gone now for over 24 hours and her counts were a little bit better... at least her ANC was up to 310. Rechecking labs again on Thursday. Please continue to pray for stability while Steve and I are out of town Thursday til Tuesday. Praising God for a slight increase in Mack's appetite and energy level! Yea God! Also continued prayers for healing of her leukemia and protection of all her organs. Gotta run and get some packing done. Thanks for your continued support and prayers! Much love, Amy*************


Well, I'm back to soliciting your prayers. Mackenzie's labs today were brutal! Her ANC was only 50 and her WBC was only 0.8. The good news is that her mono's are 80 which means her bone marrow is about to spit out a whole bunch of white blood cells. The bad news is that her fever is back. Still low grade flying under the radar at 100.2. She also continues to complain of a stomach ache and her appetite has been poor. Asking specific prayers for resolution of her fever, healing of her stomach and an increased ability to eat! Steve and I are supposed to be leaving on Thursday for our getaway to Vegas. It's only been 12 years since we've been away without the kids. Asking prayers for stability for Mackenzie and Lindsay and that with His grace we would be able to leave town without difficulty and enjoy some alone time. Also specific prayers that we can remain at home and not have to be admitted. I'm just numb. Lexie is doing great and on her way to a full recovery. "Thank you Lord!" Thanks for praying... your prayers are our biggest defense! More tomorrow, unless we end up heading downtown tonight... I'll keep you posted. Love, Amy

Friday, June 2, 2006 11:52 AM CDT

I am so happy to report that Mack's fever stayed under the radar and it seems to be resolving. No temp at the moment, but not sure if it will go up this afternoon or not. Praise the Lord! She's just so wiped out... she has small bursts of energy, but then tuckers out so fast. She continues to complain of her stomach hurting... this has been for months. Not sure what to make of it. Her appetite has really curbed off these last few days...praying it will pick up soon. But as for our BIG NEWS of the day.... ACE YOUNG FROM AMERICAN IDOL HAS AGREED TO MEET MACKENZIE BACK STAGE AFTER THE IDOLS TOUR CONCERT IN MILWAUKEE ON AUGUST 12TH!!!!! We are so excited for her! Praying that they will allow all the girls to go back so that they don't feel slighted. The final details won't come until the end of July. Someone asked Mackenzie the other day if she had a boyfriend and of course she said, "Yes, my boyfriend Ace". Then they asked, "Does Ace know he's your boyfriend?" She was upfront and honest... "No". I was cracking up. I'll keep you posted.
Lexie seems to be feeling a little worse today than yesterday, but mostly complaining about her throat being swollen and not necessarily sore. She also seems tired so her and Mack are hanging out on the couch together. Not much going on this weekend... hopefully things will remain quiet. I'm feeling a little more rested, but it has taken me several days to catch up on Tuesdays night of no sleep. The girls are all done with school now and it felt great to get up without a rush this morning. Well, better run and get some work done around here. Keep praying! Much love, Amy

Thursday, June 1, 2006 4:28 PM CDT

It has been a very stressful and eventful few days.... On Tuesday night, Steve gave Mackenzie Lindsay's heart medication by accident which sent us to the ER at Christ Hospital and nearly bought us a ticket to PICU, but with God's grace, Mackenzie handled the medication well and they admitted us to the floor instead. Came home Wednesday after being up all night long and this morning Mackenzie woke up with a fever and not feeling so well. After a phone call to Childrens regarding Mack's fever, we were off to the hospital for Lexie's tonsilectomy which went great and she did very well. Now that we are home again, we are back on fever watch with Mackenzie and walking on egg shells wondering if tonight will bring another hospital admission. I haven't been coping so great these last few days and just feel so depleted. My body just doesn't bounce back very well anymore and my reserves are so low. Please pray for strength and encouragement for me along with protection for Mackenzie and resolution to this fever without any further medical intervention. The radiation has really sucked the life out of Mack this past week as she began sleeping 14 hours a night and taking 2-4 hour naps in the afternoon. We expect this lethargy to last about a month. Please pray for God to supernaturally instill some energy into our precious little girl and restore her health. Continued prayers for permenant remission and protection of all her organs. Also prayers for Lexie for a quick recovery. We are praising God for how well she has done thus far. Pleading with Him this evening to take away Mackenzie's fever and merifully allow us to remain at home. I'll have to access Mack's port again on Saturday to give her the IVIG and then Sunday I'll draw her labs and give her chemo. Unless of course her fever spikes higher in which case we'll be in clinic or the ER. Please pray for us as God brings our family to your mind. Thanks for keeping up with us and continuing to pray us through these trials. More tomorrow. Love, Amy

Monday, May 29, 2006 9:13 AM CDT

Well, we have been enjoying this hot memorial day weekend and every minute that life remains stable. Mackenzie has been feeling great and making up for all the time she has missed being sick. I find myself trying to sort out exactly how to go on living from here. It's so strange how your thought processes and way of thinking change drastically when you have been through traumatic experiences. I think you naturally want to guard yourself from what may be coming around the corner, but yet you don't want to live in fear. And you realize that even if you gaurd yourself, it's almost a waste of time and energy because you can never prepare yourself for loss or "life altering" events. And guarding yourself or trying to prepare yourself for something like that would never ease the pain if those events actually occurred. I always struggle with the question, "How's Mackenzie doing?", now that things are more calm. My standard answer, "she's doing great right now, but you never know what tomorrow will bring." I wonder why I can't just leave it at, "She's doing great." And the next standard statement... "She looks great." I think before entering the world of cancer I falsely gained security from the healthy appearance of my kids. I've come to know way too many children who've looked great one week and are gone the next. So as grateful as we are that she's looking so good, it brings us absolutely no security for her future. But our security does fall in the hands of our awesome God. We are finding ourselves letting go and just living, because we are confident that no matter what is coming around the corner, He will see us through. He is able. Oddly enough though, when I do find myself living more carefree, and I realize I'm going through the motions of life subconciously greatful for the freedom... I begin to feel guilty for not consiously drinking in every moment fully aware of it's gift and eternally grateful to have our family intact. We are fully aware that life can change at the drop of a hat. Continued prayers for the chemo to be effective in destroying every last leukemic cell and protection over all her organs.
Lindsay has been doing pretty good too. Seems to be having an arrythmia about every four weeks, but converting on her own. We are in a holding pattern in no rush to intervene. Still working on the the anxiety issue, but she's been handling herself a little better. Please continue to pray for protection and healing of her heart and peace for her mind. Lexie will be having her tonsils out this Thursday. I'll be glad when that is done and over. Please pray for protection and a quick recovery for Lex. Kids are done with school on Thursday and I'm looking forward to a more casual pace in the morning. Steve's working basketball camps at school for the month of June...sounds like he'll be quite busy. Not much else for now. More on Thursday after Lexie's tonsilectomy. Much love to you all, Amy

Wednesday, May 24, 2006 1:16 PM CDT

Well, this is it! The big 2 hour season finale of American Idol. Mackenzie was thrilled to see Ace in the audience last night. I had to pause on him so she could take it all in... the camera just panned past him and that wasn't good enough for her. She's hoping they will all sing tonight so she can see him again. Yesterday we bought the American Idol CD. Mack gasped when she saw the cover and began hugging the CD... of course there is a picture of Ace. She said, "Oh good... Ace". Although she can't really say Ace, it sounds more like "Eight". That is ALL she wants to listen to now in the car. She'll tell you who's singing every song. When we got in the car today, the CD was playing and Mackenzie says, "Yep, dats Taylor Hicks". She knows Ace is number five and asks me to play it over and over and over. Probably not a very appropriate song for a 3 year old... Father Figure, and unfortunately Mackenzie actually listens to the words. I don't think I knew lyrics until I was in high school. Yes, he says "naked" in the song and Mackenzie laughs hysterically every time she hears it. At least she knows enough to follow her chuckle with "dats inappropriate". I guess she's heard me say that a few times. We are hoping to set something up at the concert this summer so Mackenzie can actually meet Ace in person. I'll keep you posted on those developments as they come in. I think she IS his biggest fan. I had to run to the mall this morning to pick up a dress for Mackenzie. Completely spontaneously, I decided to get her picture taken. You can check out the proofs at www.flashportraits.com. Click on "my pictures". Click on "last name" and type in Johnson. Choose "Amy Johnson" and the password is Mackenzie. They turned out pretty cute. We are hoping this is the last memoir of the bald head. Praying for permenant remission... once her hair comes back... it should be here to stay. Even though she still has 18 more months of chemo... it shouldn't effect her hair once it starts growing back. I can't even imagine her with a full head of hair. She will look like a completely different child. I pray we have the opportunity to see her with many different hair styles as she grows up. We are soooooo ready to move on! Please continue to pray for healing and protection for our little girlie. Gotta run and get a few things done before the kids get home from school. More tomorrow. Love, Amy

Tuesday, May 23, 2006 6:45 AM CDT

Believe it or not, there is not much new going on in our home. I never thought I would like or appreciate "boring", but I LOVE it!!!!! Although, my definition of boring must be skewed after the pace we have been keeping, and still having 5 little ones to tend too. Yesterday Lindsay had another arrythmia while at school and had to come home for a few hours to be on the monitor. Once she converted, she was feeling great and went back to school. Talked with her EP again and he's going to talk to another electophysiologist and get his thoughts on further intervention. I told him my preference was to sit tight and monitor how frequently these occur. If it's only going to be once a month, it may be better dealing with that than the risk that an EP study and catheter ablation would bring. I will keep you posted as I hear word. Remember that study involves being on the ventilator and using paralyzing agents buying her a ticket to the PICU for at least a night. Not something I'm anxious to do!!!! Mackenzie has been feeling great. She did great with the two additional chemo's the other day. It was wonderful to deaccess her port immediately and not have to leave it in for days or weeks like we usually have to. Her counts were right where they want them to be, so no changes or increase in her chemo's. She only has 2 more weeks of her school therapies, but speech and physical therapy will continue through the summer when we are in town. Planning on heading north to MN and WI for the month of July. This new "freedom" is so exciting. Will still have to arrange for blood work and chemo while we are gone, but at least we can go! In the fall, all Mack's school therapies will begin again. We will keep her in the home and keep the set up the same. Then the following year, we'll transition her to the school setting. Because of her October birthday, she still has two more years of preschool. That's definately to her benefit. Please continue to pray for healing and protection for both Lindsay and Mackenzie. Specifically for Lindsay's heart to stablize and for destruction of every last leukemic cell in Mackenzies little body. Your prayers continue to be so valuable and important and we appreciate every one of them!!!!! Thank you for continuing to post in the guestbook. It's great to feel connected. Better run and get the kids off to school. Much love, Amy

Sunday, May 21, 2006 8:37 PM CDT

MONDAY May 22nd 11am : Just wanted to let you all know that the Kooi's (little Kaitlin's family) had their baby. Maxwell David was born on May 18th and mom and baby are doing well. I know this is a time of many emotions... if you have a moment, please drop them a note on Kaitlins webpage. Thanks! Love, Amy*****

I can't believe it's Sunday night already, this weekend went by sooooo fast. The Jerry Seinfeld show on Friday night was awesome! I don't think Steve and I have laughed that hard in a very long time. He was so funny without all the foul language and vulgarity. I didn't want it to be over and I can't wait to see him again. Saturday was crazy busy... just fun stuff. Sunday we celebrated Lindsay and Taylors birthday again with my family now that everyone is back in town. Macks labs looked great today and she got her chemo's as scheduled. Praising God for this great news. I should hear tomorrow whether or not they will increase her 6TG. Saturday morning I spent the whole morning trying to get tickets to see American Idol (for Mack, of course). Wasn't able to get 8 seats together at the Allstate Arena so we will see the concert in Milwaukee. I'm contacting the Bear Necessities (a local group that grants small wishes to kids with cancer) to see if they can arrange for Mack to actually meet Ace at some point while we are at the concert. I asked her what she would do if she met him and she said, "Ummmm, just play with my boyfriend Ace". I was cracking up. She loves to tell everyone, "I'm gonna see my boyfriend 'dis summer". This is one serious crush! It's been so wonderful to see her feeling so well and getting out and about a little bit. Well, sorry to cut this short, but I must go tuck everyone in, it's late. Just wanted you all to know that we had a great weekend and are looking forward to many more like it! Thanks for your continued prayers and support. More tomorrow. Love, AMy

Wednesday, May 17, 2006 7:25 AM CDT

****Friday 5pm UPDATE***** Ok, I guess the word got out....I'm another year older. Thank you for all the nice birthday wishes! Getting ready to head out the door... Steve and I are going to see Jerry Seinfeld tonight. I'm so excited! Nothing better than a whole lot of laughter on my birthday this year! Much love to you all! Amy*************

Seems like when the medical stuff slows down... other things in life get busier. Mackenzie got her orthotic's (ankle braces) yesterday and loves them. I was wondering if she would fight me on wearing them, but she thinks they're great. She had a good clinic visit yesterday. Depending on her labs on Sunday, we will most likely increase her 6TG dose. I can't believe it's time for labs and more chemo again in just a few days. After clinic I had a CT scan of my sinuses again. I've been battling this nasty infection for nearly three months and for the first time, my scan was clear! So happy for this news as my doctor was starting to think they may need to do something more invasive to clear it. Stopped up in the NICU to see all my friends/co-workers. Got the itch to jump back to work real bad, but know that God wants me to be at home right now and so I will sit tight and obey. I miss everyone there sooooooo much. (Love you guys!)
Heading out this morning to Lake Forest High School as the kids are doing a triatholon fundraiser for Mackenzie. I think Mack may start the race. We are so grateful for this amazing community that continues to support us in so many ways!!!!! I can't speak highly enough of the staff and students!!!! We have been so blessed by everyone's desire and motivation to help carry our burdens. Thank you Lake Forest!!!!
The rest of the week is busy with all of Mack's therapies and doctor appointments. Please continue to pray for healing for Mackenzie and Lindsay. Also for decisions regarding their care and wisdom for their doctors. Thanks again for continuing to check this site and praying for our specific intentions. Much love to you all! More on Sunday. Love, Amy

Sunday, May 14, 2006 9:21 AM CDT

Happy Mothers Day! We have been celebrating all weekend with Lindsay and Taylors birthday party at TGIF, sleepover and then Chuckie Cheese. Had friends over last night for a double feature in the theater and woke up this morning (after sleeping in until 8:30) to a clean house and breakfast already made. The girls got up and cleaned and decorated the house. Mackenzie continues to feel great. She's looking quite "scrawny" to me, but I guess it's more normal. I'm so used to seeing her all puffed up from the steroids. Eating fine. Potty training done and if that's not a reason to celebrate, I don't know what is. After 11 years I have the freedom to leave the house without a diaper bag attached to my shoulder. It's crazy! Going to my brothers house today...my parents have been in AZ for the past three weeks. They have been blessed with much rest and relaxation and it was well deserved after the past few months at our house! Heading to clinic with Mackenzie on Tuesday, but it will just be for an exam since I'm doing the blood draws and giving the chemo every other week. I can't believe how fast two weeks goes by. Lindsay's heart has been stable and her anxiety comes and goes like the wind. It's so random. Please continue to pray for God to infuse her with peace and that He would equipt her with the thought processes and skills needed to overcome this anxiety. That He would show her in a very real and tangible way how powerful her brain is and that He has given her the tools to use it effectively. Also for her heart rhythm to remain quiet and her heart function to be excellent. Prayers for Mackie, for normal bone marrow production and destruction of any leukemic cells that may still be hiding out in her body. Protection of her organs from all side effects of the chemo and various other drugs she continues to need. Protection from infections as she will continue to be immunosuppressed during this maintenance phase of treatment the next 15-18 months. Continued prayers for growth and development as she strives to close the gap and catch up after missing out on 2 years of her life. Lastly, praise and worship for all the answered prayers we have witnessed on this journey! I feel like we have been in captivity the last 2 1/2 years and we have just been set free. We are most grateful to be able to share this time with all five of our girls. We recognize God's great power and merciful love as the ultimate key to breaking free, but also see how He has instrumentally placed all of you in our lives to tenderly care for many of our needs along the way. Your prayers, petitions and beckonings on behalf of our family have nodoubtedly impacted the course of our life. We will never know their full impact until we are before the throne of our wonderful Savior. I can only imagine how overwhelmed we will be when we fully discover the power of those prayers. Your faithfulness in standing beside us and continuing to pray for all our requests has not and will not be forgotten. May He bless you all richly for opening your hearts, minds, and souls to Him AND for allowing Him to use your lives to accomplish His plans in ours. This is our real family, how blessed we all are by this tangible expression of His blueprint and original design for our lives. His plans are perfect, may we ALL trust in Him!!!!!!! Sending much love and many thanks to you all, Amy

Wednesday, May 10, 2006 8:48 PM CDT

Not much new going on at the Johnson home. Mackenzie has been feeling well and the rest of the gang is hanging in there. Just anxious for the school year to be over. Potty training is going great. Last night when Mack was headed to the bathroom, she said, "wish me luck Kali". I was cracking up. She was looking at pictures of Carter today and when I told her he was in the hospital, she was pulling me by the arm trying to get me to take her to the hospital. She also said she wanted to see "crazy Margaret", one of her favorite nurses. Carter is prepping for his bone marrow transplant, please keep him in your prayers. Looking forward to celebrating the twins birthday this Saturday and heading to my brothers house for mothers day on Sunday. We feel incredibly blessed these days and truly appreciate this normalcy in the here and now, never knowing what's around the corner. Please continue to pray as God leads you. Much love, Amy

Saturday, May 6, 2006 7:53 PM CDT

*****SUNDAY May 7th 8pm UPDATE****** Labs look good. Still on for chemo tomorrow. Spent the day at a park with my grandma and the girls - Mackenzie had a major workout and crashed hard in the car on the way home. Please continue to pray specifically for protection of Mackenzie's organs and healing of her leukemia. Also, Lindsay's appt. tomorrow at 5pm. Lots of prayers, however God leads you! More tomorrow night. Love you all, Amy*********

Seems funny (and wonderful) that there is not really anything new to share. Mack's still fighting her cold, but feeling great. We are enjoying this calm to our storm at the moment. Accessing her port and drawing labs tomorrow. Then she'll get two chemo's on Monday in addition to her daily oral chemo. Tuesday I'll give her the IVIG infusion and then I'll be able to deaccess her port again. She loves being "free-free". Spending the day with my grandma tomorrow... the girls LOVE GG!!!! Lindsay continues to have MAJOR problems with anxiety. We are taking her to see someone on Monday. Please pray that it would be a good fit and that God would help enable Lindsay to be free of her fears and anxieties. She cries almost every day and says, "I don't want to be scared anymore." Also praying that insurance will cover the costs of getting her some help!!!!!!! Thanks again for all you guys have done, we are sooooooooo grateful! More on Monday. Love, Amy

Wednesday, May 3, 2006 7:25 PM CDT

No news is good news. Not much going on here other than normal "life stuff". Every morning I wake up praising God for the greatest gift ever... life. I feel on top of the world, but with the reality that it could be taken away from me at any minute. And so for the present... I am grateful! I think I've taken the present for granted almost my whole life. I've been so wrapped up in things of the past or what lies ahead that I've lost today. But when you finally figure out how to honestly live in the moment and truly appreciate every minute of it... IT IS BEAUTIFUL! I wish it was easy to keep this perspective, but the world pulls us in so many different directions and most of us hold onto things of yesterday. It actually takes energy and a concious decision to stay in the moment... strange huh? My heart is gushing with thanksgiving for the opportunity to share today with all five of my girls and my wonderful husband. God has been so gracious, how I pray that my heart pleases Him. That is my greatest desire and one of the most important, satisfying and fulfilling things of this world. The "slow" pace (relatively speaking), that our life has taken on these days, has been healing. Finally having the time to sit down and read a book with Lexie, or listen to Lindsay and Taylor's stories from school or have the energy to go to the park with Kali has been awesome. To actually look at their homework before they turn it in or go through their backpacks after school, I feel as though I'm rediscovering who they all are. And I actually feel as though I'm falling in love with Steve all over again. For all of those who prayed specifically and intentionally for protection over our marriage or for God's provision over keeping our family intact... He has heard and answered in a big way! (Larry and Anne... we have many pennies in our piggy bank now, and despite our cicumstances, our relationships are richer and stronger than a year ago when Mack relapsed. Thank you for the advise of intentionally and routinely giving small amounts of time to eachother for the sole purpose of building our relationships. We are beginning to see the rewards of that investment!!!! It was instrumental in the victory over illness and stress threatening to destroy our family. And crucial to the health of our family relationships. We love you guys so much!)

Mackenzie continues to feel great. Still fighting a cold, but it hasn't slowed her down at all. Normally, we'd be going to clinc on Monday for chemo, but they are letting me give it at home - hooray! Please continue to pray for protection of her organs, tolerance to all the meds and healing of the leukemia. Steve and I are heading out to dinner and a movie Friday while the highschoolers catch up with the girls. And Steve and I have actually booked a 4 day vacation at the beginning of June. It will be the first time we've been away without the kids since our honeymoon 12 years ago. I am sooooo excited! Well, American Idol has begun, so I must go see who is getting the boot tonight. Thank you all for every prayer, thought, donation, dinner, letter, post on the webpage and everything else you all have done to help lighten our load. More on Friday. We love you all! Amy

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