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Saturday, January 27, 2007 11:06 AM CST
******6pm UPDATE****** ADDED NEW PHOTO'S****** Things her moving along, although today has seemed long. Mack is hanging in there. Tonight starts the new chemo at 10pm and we are praying that it doesn't make her too sick. She has been out and about, down to the playroom, but slowing down. She was less crabby today and even laughed and smiled some. (More blessings) Tuesday at 10pm will be her last dose of chemo. We're almost half way there. It takes about ten to fourteen days for the chemo to shut down her bone marrow and her counts to bottom out. She will most likely be without any white blood cells for two to three weeks. This is the time that she will be at very high risk for life threatening infections and require frequent blood and platelet transfusions. Trying not to look too far ahead and just get through one day at a time, checking them off as we go. Thanks again for all the messages. We love reading your words of encouragement! I'm planning on sleeping at the Ronald Mcdonald house tonight and Steve will stay with Mack. I'll probably check in one more time before I leave later tonight. Keep praying! Much love, Amy**********
Well, Mackenzie finally gave in around 9:30 last night and slept pretty good. Even though I was in the room with her, it wasn't too bad of a night and I actually feel rested (another blessing!). She still seems tired today, but so far, she's more "agreeable" and not quite as crabby. They've been keeping her busy with crafts, activities and therapies. Steve arrived this morning and it was sooooooooo good to see him. It's only been five days since he has been away, but it feels like a month. Mack was very excited to see Daddy! Today Mackenzie will begin another chemotherapy which she's never had before. I guess it is blue in color and her urine and tears will turn blue. Please pray that her little body tolerates this new drug and for special protection of her heart. And continued prayers for His mercy and grace to guard her from all the nasty side effects of these potent drugs! It's hard to see her feel lousy. I finally have the post office box set up at the post office here in Cincinnati... it is directly across the street from the hospital so we thought mail would get to us quicker if sent to the PO Box rather than the hospital or Ronald McDonald house. I've listed that address along with the address for the bank information for donations above. I'll try to get a few new pictures posted later today. That's about all for now... Keep on praying! More this afternoon. Love, Amy
Friday, January 26, 2007 11:23 AM CST
*****10pm UPDATE****** Mack finally gave in and fell asleep. All is peaceful at the moment. Overall, I'd call it a good day, just difficult and exhausting. Steve will be here tomorrow and I can't wait to see him. Mackie's been asking for Daddy, so I'm sure that will pick up her spirits too. He'll be here through Tuesday. Grandma and Grandpa Johnson are holding down the fort at home with the other girls. And my mom is driving home to see my dad for a long weekend. She's ready for a break too. Although this has been so very hard on our family, God has been so tender in caring for us in our fragile state. He's used so many of you all to meet our needs in so many different ways we are in awe. It truly takes a village to get through something like this and you all have been so willing to step up to the plate and pitch in. Thank you! We don't feel alone in this valley and that is a gift... another blessing! Thank you Faucet Queen for your incredible and generous donation of gift cards. We are overwhelmed! Your dedication to helping our family is remarkable and we are so grateful for your help. The post office here finally called and our PO Box is ready. We decided since the post office was right across the street, we'd open a PO Box here to receive mail. It will be easier than going through the hospital or Ronald McDonald house. I'll give you all that address tomorrow. Well... I'm off to bed, hoping to get any amount of sleep here in the room. :-) More tomorrow. Love you all, Amy*******
********4:40pm UPDATE*********Blessing #1 The PICC line is in! It was quite traumatic for both Mackie and grandma. My mom came back crying and said that was the hardest thing she has ever done. Mackenzie was scared and crying, trying to get out of the straps that were holding her down. It was also a very difficult line to place and they almost gave up on it. As a last resort, the called the doctor in who used a stiffer wire to thread past the problem and got it working. Praise God. My mom said the whole room celebrated once it was in. Mackenzie is moody today... laughing one minute, then crying, then angry. She is down at the playroom right now, so hopefully getting out of the room will be good for her. I know she is exhausted, but doesn't want to take a nap. She's getting a large volume of fluids in her IV so makes sleeping hard when you have to go "potty" every hour on top of the nurses coming in for meds and vitals. After the sixth day of chemo, I think the volume of fluids will be lowered. Blessing #2 Great night of sleep for me last night. Blessing #3 A friend of a friend who works at this hospital came to visit today (thank you Danielle!) and it was nice to have another connection here. I'll try to take some pictures and get the downloaded today so I can post them for you all to see. We are in the process of setting up a video phone through the computer so that the girls can see and talk to us from home. I can't wait!!!!! I'm going to run and relieve my mom in the playroom...she's very tired after no sleep and is looking to catch a little nap. I'll update again later this evening. Keep praying, keep praying!!!! Love you all, Amy*******************
First let me start by asking if you are reading this around the noon hour (Cincinnati time) Please stop reading and take a moment to pray for Mackenzie. They just took her to the interventional radiology suite to have a PICC line put in her arm. (A more permenant IV site) She was quite distraught and crying "I don't wanna go, I don't wanna go!" The placement will be challenging as Mackenzie has been accessed so many times and she has the port in that vessel and she has that occlusion in that vessel. Please pray NOW for God to guide the catheter into the right spot and for Mackenzie to have piece and be filled with His strength. That He would hold her and caress her and take away all her fears.
The child life people here are AMAZING! Their dedication and commitment to comfort these patients is like NOTHING I have ever seen before. Mackenzie was a little response to their diversion tactics with puppets and play, but she's overly tired from lack of sleep and beginning to feel the effects of this nasty chemo. I had a great night sleep last night for the first time in a week. The Ronald McDonald house is very comfortable and will suit our purposes while Mackenzie is in the hospital. You may be tired of hearing me remind you of the same prayer requests day in and day out, but they are so important and we need to come together as family and bring these requests to our Father on a daily basis. Continued prayers for tolerance to chemo, protection of her liver, kidneys, and heart, protection from ALL infections, and healing of her bone marrow. Praying the chemo will destroy every last leukemic cell in her body and asking God to heal any cell that is resistant to the chemo. Praying for SOLID remission! There will be many more specific prayer requests that will change daily, but the ones I have just listed will be ongoing and I will keep asking you to pray for those.
I can't wait to read the guestbook, your notes are always such an encouragement and bright spot of our day! Keep 'em coming. I'm going to cut this short so I can post and have some prayer warriors praying for Mack's procedure now. I will write again this afternoon when she returns. Love you all! Amy
Thursday, January 25, 2007 8:16 PM CST
Another amazing day. I have to soak in these days because I know there are tough ones coming, but boy are we grateful for the good ones... each and every one we can get! Mack has been feeling good all day. She began her PT, OT, and speech therapies and loved interacting with her "new" teachers. Blessing #1 Despite the start of chemo, Mackenzie continues to be happy and playful. Blessing #2 The staff here is amazing! I've never seen someone love my daughter and care for her with such tenderness as I have seen here. She is looking forward to working with all her therapists, a school teacher, music therapy, massage therapy and the "Hair Fairy" coming. Yes, just like the tooth fairy, the hair fairy comes in the night and brings a special gift and leaves something under your pillow when you lose your hair. Blessing #3 I am able to leave this evening and sleep at the Ronald McDonald House and hopefully get a good night sleep... it's been a few days. My mom is staying with Mack. Blessing #4 THE BIGGEST BLESSING OF THE DAY... The transplant search team has found an "unbelievable" umbilical cord blood match in Belgium. We must have some foreign blood in us because all of her matchings pull up from Belgium. The match is 5 out of 6... obviously, 6 out of 6 would be perfect, but 5 out of 6 is great! And they have two to choose from, one with a cell dose of 10 and the other with a cell dose of 12. The doctors were hoping for a cell dose of 3. The cell dose is the "volume of cells" and they are finding that the larger the cell dose is actually more important than the match... but you still need a good match. The cord blood that they had found for her two years ago was 5/6 with a cell dose of 7 and the doctors were astounded by that. They seem to be blown away and totally fired up for these new matches for Mack. They are bringing them both over from Belgium for further testing to see which one would be the best match. I haven't heard anything from the marrow donor search, but will keep you posted on that front. Mackenzie will be going to have a PICC line put in her arm tomorrow in anticipation of the MANY drugs she will need to support her through the next month.... lots and lots of blood products, platelets, IVIG, antibiotics, antifungals, fluids and nutrition. They are very proactive in "forseeing" problems and trying to head them off instead of waiting for a problem to arise and then reacting to it! Please continue to pray specifically for Mackenzie to go into a very solid remission with this therapy and that no leukemia cells would be found when they do the next bone marrow in a month. Also, for the next six days we are focusing our prayers on protection from all the nasty side effects such as nausea, vomiting, diarrhea, body aches, fevers and mouth sores. After the six days then we will shift the concentration of our prayers to protection of all her organs, PROTECTION FROM INFECTIONS AND REMISSION! I feellike I have so much to tell you, but I'm using a computer at the Ronald McDonald House that belongs to a worker here, so I should probably get off. Just wanted you to know that today was a good day and we ask you to continue to get down on your knees and pray fervently for mercy and grace to continue to rain down on Mack. Also, praises for the blessings of today! Hopefully tomorrow I will have more time to update. Thanks again for keeping up with us. Much love, Amy
Wednesday, January 24, 2007 7:27 PM CST
What a day. I decided that I was going to purposefully and intentionally look for God's blessings and mercies in each day and write them down so that I can focus on these things when the going gets tough. God continues to part the red sea here in Cincinnati! Blessing #1 today... timing of our appointment which I had no choice in, they just told me to be in clinic at 2pm. We had the entire morning to leisurely get ready, pray, eat together, give Mack a bath without all the rush and hustle and bustle that would have occurred had they asked us to come earlier. Blessing #2 my mom and Helen are currently moving all of our stuff into the Ronald McDonald House as I type. I haven't seen it yet, or heard from the "movers", but I was told our room sleeps 4. We were number 31 on the waiting list just five days ago and praise God that Helen is here to help my mom because we have accumulated soooooo much stuff!
Mackenzie is holding her own and feeling great, but it's all about to change as they start her chemo tomorrow morning. Fortunately, they are very proactive here regarding comfort measures and we are hopeful they will help her not to be so miserable through this experience. Mack's echo today looked good, another praise God! Her team of doctors consulted this morning and changed her plan of chemo. Doesn't shorten her stay at all but it will be six days of chemo instead of eight. They said the average length of stay for a child getting this chemo is 35 days. We were also shocked to find out that if Mack's marrow is in solid or "deep" remission after this 35 days they may send her to transplant at that point instead of continuing with the other two months of chemo. They want her in the best condition and strong going into transplant and are concerned that the extra chemo may make her to weak. These decisions will be revisited as we see how she tolerates this and how her bone marrow responds. Please pray for SOLID remission and tolerance to chemo along with protection from all the nasty side effects. ALSO, asking God to choose the perfect bone marrow or cord blood for Mack's transplant. He knows exactly what her little body needs.
We got settled in our room and the stress level is so much less just having a large spacious, clean room. Another blessing I am thanking God for. We are very comfortable here with a small desk with computer access and a full size bed for me to sleep in (or whoever is staying with Mack). It is bright and cheery which definately helps. And I've been so pleased with the entire team of doctors, nurses, social workers, school teachers, financial advisors, nutrionist, PT, OT, speech therapist, transplant coordinators and whoever else I met and have failed to mention. We have peace about our decision to follow God's lead here and feel confident that this is where He wants us to be.
Unfortunately, it's about to get real rough and it was difficult to hear all the life threatening things that may happen after she receives this chemo. Please pray for God's mercy to protect Mack from not only all the side effects but from all infections. We KNOW He is more than able and we are asking Him to place a hedge of protection around Mack and that His angels would stand guard all around her room. We have totally surrendered and handed Mack over to our loving God, trusting in His perfect plan, and praying that His Will aligns with the desires of our heart.
Thank you all for continuing on this journey with us. Your willingness to go the extra mile has impacted our lives deeply and we have learned so much about ministering to others through all the ways you have ministered to us. Your prayers are powerful and have played a major role in our lives. He hears and He answers.
Hoping to get some pictures tomorrow here and posted before Mack's hair all starts falling out again. It's been such a blessing to share our little girl with you all! Thanks again for the incredible support you have given us. We couldn't make it without our faithful Father and all of you walking with us. We love you all! More tomorrow. Much love, Amy
Tuesday, January 23, 2007 8:42 PM CST
What a day... It is truly amazing how God continues to orchestrate everything in His timing. The doctors were hoping to have all the pathology reports and gentics and biopsy, bone marrow and flow study results by tomorrow, but they thought realistically they wouldn't hear on some of the tests until Thursday. I got a call around 2pm this afternoon asking if we could bring Mack to the hospital tomorrow to be admitted because they were "surprised" to have ALL of their information less than 24 hours after performing the procedures. Mack's bone marrow is packed with leukemia, but there was no scar tissue or patches of something that would make it difficult for healthy cells to grow. So that was good news. It is still ALL, hasn't changed to some other form of leukemia, and her DNA looked the same. No surprises is always a good thing in the medical field. They've devised the chemo plan which begins tomorrow. It will be brutal, but they are truly striving to make her as comfortable as possible. She will be nailed with chemo for eight straight days and then we will remain in the hospital for the following three weeks waiting for her bone marrow to recover from that hit. Please pray for her body to tolerate the high dose chemo, and specifically for protection of her heart, liver and kidneys and protection from all infections. Also, HUGE prayers that her marrow goes back into remission. I'm not sure when the next bone marrow aspiration will be. We'll find out more details tomorrow. When I look back at all that has transpired, I can see God's handprint all over our lives. I'm in awe at all that He has accomplished in a few short days.
My mom and I took full advantage of this day off and shopped all day. We were at a really nice mall nearby and I had a minor breakdown. Walking around seeing life going on was painful. I just wanted to yell "Stop, don't you people know my little girl is fighting for her life." We bought her a few toys and a few new outfits and I wondered whether or not she'd ever get the chance to bring them home. I get these waves of sadness that overwhelm me at times. I had to sit down and sob. Mack said, "you cwyin' mom?" I shook my head "yes". She said, " I not dunna die." And then after a long pause, she said, "I love you momma. I love everyone." Of course, by now my mom was broken down in tears too. I cannot even begin to imagine how God must have felt watching His own son brutally beaten on the cross. Its soooooo hard watching your child suffer.
Tomorrow once we are settled into our room, I will have more information about the weeks ahead. I know many of you have offered to help and we are still brainstorming ideas in all the different areas of need. If God lays something on your heart as a way to help, please don't hesitate to ask. We know God is using each of you to meet our needs and we are so grateful. I will also post the information about Mack's charitable account where donations may be sent.
Off to bed now, cherishing every moment with our little girl. Keep PUSHing and PULLing. Much love, Amy
Monday, January 22, 2007 5:22 PM CST
I am so exhausted and I feel like my head is swirling. The smallest little hurdles seem large. My brain must be fried because I can't remember anything anyone tells me, and I can't keep track of any of our stuff. Good thing the people down here are so organized and on top of it. Mack was in clinic today and had her bone marrow aspiration, bone marrow biopsy and spinal tap (through her ommaya port). They decided to also treat her spinal fluid today with some chemo and they used the drug than normally makes her violently ill. I don't know if it was the sedation from the bone marrow or the "pre-med anti-nausea cocktail" that they gave her, but she woke up with the biggest smile on her face asking for her fried rice. NO PUKING AND NO NAUSEA!!! Counting each and every blessing as we go... this was a BIG one! "Thank You Lord!!!!"
We are still at the hotel waiting to get into the Ronald McDonald house, they think maybe by the end of the week. Mack goes back on Wednesday for an echocardiogram and clinic. This is when we will learn the plan of action. They are hoping to admit her on Thursday and start her chemo again, but it may be Friday if they don't have all the results back from today's tests. We had as good of a time as possible under the circumstances with girls and my brother and his family. They all left this morning and it was one of the hardest moments of my life. Saying goodbye hurt so much. I didn't expect the overwhelming emotions, I miss them already. My mom and I are just trying to get settled and figure out all the things we need from home. Our dear friend Helen is driving down tomorrow to bring us our stuff and spend the night. The timing is perfect as Mack doesn't have any appointments until Wed. at 3:30. I'm sure we will spend much time on our knees in prayer along with many tears and much laughter. Girls are going back to school tomorrow and I ask that you pray for for God's provision over them and that He would fill the void and help them through this very difficult situation. They played a big part in our decision to pursue transplant as we made the decision together as a family with much soul searching and prayer. They seem to understand all it entails and truly wanted to give Mack a chance to survive. Steve will be back in Cinci on Sat. His parents are coming down to stay with the girls. Beyond that, I don't know what life will bring.... one day at a time. Please continue to pray for wisdom for Mackenzie's team of doctors over the next two days as they meet together to decide which drugs to use and how to treat this nasty disease the best way possible with all that she has ahead of her. AND continued prayers for more mercy and more grace for our sweet Mackie girl!!!! More tomorrow. Much love to you all! Amy
Saturday, January 20, 2007 10:40 AM CST
Let me first start by saying, you guys are awesome and we love you so much! Mackenzie is enjoying these last few days of "freedom" and we decided to have my brother bring all the girls down to spend the next few days with Mack. Planning on a visit to the aquarium and the zoo along with more cannonballs in the pool per Mack's request. We would also like to explain all our decisions to the girls and what they will mean to them along the way. Also this will give them a visual of where we will be. They should be arriving this afternoon and returning home on Monday. I can't wait to have our family together!
The day Mack relapsed, we were up early to get to the hospital and I didn't read my devotional. Today, I went back to read what January 18th had to say. Once again, I was encouraged. Get this...
2 Corinthians 2:14 "Thanks be to God, who always leads us in triumphal procession in Christ."
God wins His greatest victories through apparent defeats. Very often the enemy seems to triumph for a season, and God allows it. BUT then He comes in and upsets the work of the enemy, overthrows the apparent victory and as the Bible says, "frustrates the ways of the wicked" (Psalm 146:9) Consequently, He gives us a much greater victory than we would have known had He not allowed the enemy seemingly to triumph in the first place.
The story of the three Hebrew young men who were thrown into the fiery furnace is a familiar one. There was an apparent victory for the enemy. it "looked" as if the servants of the living God were going to suffer a terrible defeat. We have all been in situations where it seemed as though we were defeated, and the enemy rejoiced. We can only imagine what a complete defeat this appeared to be for Daniels friends. They were thrown into the terrible flames while their enemies watched to see them burn. Yet the enemy was greatly astonished to see them walking around in the fire, enjoying themselves. Then the King told them to come out of the fire. The enemy "crowded around them. They saw that the fire had not harmed their bodies, nor was a hair of their head singed; their robes were not scortched, and there was no smell of fire on them...for no other god can save in this way" (Dan 3:27-29)
This apparent defeat resulted in a miraculous victory. Suppose these three men had lost their faith and courage and had complained, saying, "why didn't God keep us out of the furnace!" They would have been burned, and God would not have been glorified. If there is a great trial in your life today, DO NOT ACKNOWLEDGE IT AS A DEFEAT. Instead, continue BY FAITH, to claim the victory through Him who is able to make you "more than conquerors" (Romans 8:37), and a glorious victory will soon be apparent. May we learn that in all the difficult places God takes us, He is giving us opportunities to exercise our faith in Him that will bring about blessed results and greatly glorify His Name.
WOW, WOW, WOW!!!! How powerful is that????? He is so good! And we are claiming His victory! Gear up my friend, we are preparing to enter the fire. More tomorrow. Love, Amy
Friday, January 19, 2007 9:12 PM CST
It is clear that the gates of heaven continue to be stormed with pleas for our sweet Mackenzie. I have so much to share, and yet, so exhausted, my mind is jumbled. Yesterday it felt like a nuclear bomb went off and my life was shattered with pieces of it flying in all different directions. Today, I saw all those pieces coming back together as God set us on His path and began to light the way on this journey. We met with so many doctors and specialist today that my mind is spinning. I've never been so impressed with a system like they have here in Cinci. I think we met with over thirty people who just began picking up the pieces and putting them back together for us. Our immunologist has been wonderful and he is brilliant. Mack had trouble again with her IVIG infusion, horrible shivering, increased heart rate and her body desperately trying to fever. Fortunately, with lots of benadryl, steroids and tylenol, along with a very slow rate of infusion, she was able to get her full dose. Please pray that her body would adjust and she would be able to tolerate these infusions monthly. Our time with the bone marrow transplant doctor was encouraging, and we have decided to move forward with transplant. We met with the oncologist who will be taking over Mack's care and they will be meeting on Mon and Tues to devise an appropriate chemo plan for Mack to get her back into remission with the least toxicity. On Monday we will go to clinic here where they will repeat Mack's bone marrow aspiration, more blood work, and tap her ommaya to check her spinal fluid. Based on those results, along with the chemo's she's already had, the entire team will need to agree on the plan. The hope would be that she would tolerate and endure 14 weeks of intensive chemo therapy and then go to transplant. We are expecting to be admitted on Wednesday or Thursday, depending on how quickly results come back. She will be inpatient for a month. We are here in Cincinnati for the long haul... it will be a minimum of 6 months, but probably longer. As for the transplant, we asked about setting up a bone marrow drive since we have no match in our family and last we heard, the registry had minimal potentials for Mack. They would like to see the results of her genetics first to see if that would be favorable for her. Not sure what that means, but I guess if she has funky genetics its so unlikely that there would be a match. They also told us that if they found an umbilical cord blood that had a big cell dose and was a 5/6 match, they would prefer that to the non-related bone marrow donor. We know that there was a phenomenal match in Belgium that was being held for her two years ago. Hoping that it is still available or something even better. The hospital is paying for us to stay at a hotel nearby with shuttle service to the hospital since there is no room at the Ronald McDonald house. Once a room opens up, we will move there. Eventually, we will most likely rent some 'corporate housing' nearby. The social worker is looking into tutoring for the girls, should they come down permenantly before the end of the school year. For now, Steve will be doing A LOT of commuting back and forth and will bring the girls every other week for a long weekend. They are also looking into some financial grants for us to help offset the enormous expenses to bone marrow transplant. Everyone here is so nice. We were welcomed with loving arms and feel such peace about our decision. Thank you for praying for all of our decisions. Praise God for making it abundantly clear to us on how to proceed. We've been in awe how things have "fallen" together. Mack's been doing cannonballs all night and loving the pool. Planning on swimming again tomorrow and watching the Bears game on Sunday. I can't believe that I am even writing about "normal" life things with all that lies on our plate. God's mercies have been abundant today! I'm trying not to look too far down the road, but there are many ways that we could use help, and I'll let you know in the days ahead and as issues arise. Your messages and encouragement keep us going... it's like our life line, so keep 'em coming. We feel incredibly loved through all your support. Well, the letters are fuzzy as I can hardly keep my eyes open so I'm off to bed. Please pray for protection for Mackenzie and wisdom for her team of doctors in making decisions on treatment. Also, tolerance to treatment without complications. And praise for so many answered prayers today. We love you all sooooo very much! More tomorrow. Amy
Friday, January 19, 2007 10:34 AM CST
We made it to Cinci at 2am last night, not much sleep. God seems to be orchestrating things here for us. The head bone marrow transplant doc is in clinic today, which we were told was a "miracle" and will meet with us around 2pm. Your prayers and words of encouragement are amazing. Please keep them coming. I can only read a few at a time because the tears that flood my eyes make it impossible to read. You are all so amazing and we love you all so much. We are so blessed to have so many people willing to stick by our side through thick and thin. I am moved to tears, again, by the way you have all poured out your heart and your lives to us. Many of you we have never met and may never meet, and yet we still hold you so close to our hearts. This is how God bonds His family. It is amazing to witness. We are holding up... good moments and then bad, laughing and crying. The big picture of the road ahead is so overwhelming it makes me physically sick. BUT, I have learned to keep bringing my thoughts back to today and the task at hand today. My devotional today was from Luke 18:1 "then Jesus told his disciples.... that they should always pray and NOT give up." WOW!!!! It is such a long haul ahead and we will need you guys more than ever. We are leaning towards staying here in Cincinnati and beginning treatment. We have so much on our plate with uprooting the kids, the logistics of living here for six months to a year, Steve having to travel back and forth to work, financially paying to rent something here and just all the little things. I know God is with us and will NEVER leave us. I am confident that He will show us the path to take. He has been so faithful and always will be. We are placing all of our hope and trust in Him. Numbers and statistics mean nothing. I just need to make sure I'm on the path that He wants me to be on and then I will have peace no matter the outcome. That peace comes only from him. So we ask specifically for prayers that He would make it abundantly clear to us whether or not to pursue transplant. Mackenzie is feeling well. Its so hard to watch her run and play and know what she will endure in the days ahead. Please, continue to plead for more mercy and grace. His supply has no limit. I'll write again later tonight when we get back from the hospital. We love you all sooooo, very much!!! Amy
Thursday, January 18, 2007 5:01 PM CST
RELAPSE!
Don't have any words right now... too much pain. All we've been told is 20% survival with bone marrow transplant and 3 to 6 months to live without treatment. Heading out the door to drive to Cincinnati to consult their team. We have so many decisions to make. Please pray for peace and guidance of our decisions. More when I have the energy. Your love and support means so much.
Much love,
Amy
Thursday, January 18, 2007 11:50 AM CST
I can hardly write, but I needed to come to the computer to ask for desperate prayers. Mackenzie's blood work today have the doctors very confused, and more concerned that she is relapsing. She is in the sedation suite being prepped for a bone marrow aspiration as I write. There is a strong probability that the results of this will be inconclusive also. Steve is broken, and hasn't stopped crying since they informed us of her blood results. I'm numb and feel like I'm going to vomit. Please call out to our gracious God and beg for mercy for Mackenzie and our family. Prayers for wisdom and guidance for the doctors to know and sort through what is happening in Mackenzie's bone marrow. Please pray with passion, as you have never prayed before. We need you all now more than ever. Pray specifically for healing of Mack's bone marrow and for conclusive results showing this is not relapse. After the procedure is done, it takes several hours to prep the slides before we would get results. As soon as I know anything, I will let you know. In the meantime, please pray... your prayers are powerful and we are hurting.
Tuesday, January 16, 2007 6:45 AM CST
****************Just was thinking... three years ago today, Mack was diagnosed. And Steve brought to my attention that Mack's webpage has over 300,500 hits. God has been so faithful in bringing people into our lives to carry us on this long journey! "Thank you Lord, for each and every person that has visited this page. May you bless them richly and make Yourself evident to all who have supported our family during these last three years. To see the multitude who have been obedient to your promptings and moved to help us during our hour of need is powerful and humbling. Draw us all near as You reveal more and more of Yourself to us. To be used by You is such an honor and a priviledge that we feel underserving of. May we bring you glory and praise ALWAYS! And may our faith increase through the love you have shown to us and through your faithfulness in carrying us during these past three years. You have met each and every need, even those we did not see. You were never early and never late. Your timing is perfect. You are so wonderfully amazing and our love for You runs deeper with each day. Oh Father, I love you so much. I am so blessed by our relationship and would be so broken without You. You enrich our lives bringing such fulfillment and satisfaction and contentment even during turmoil. Just as You promised, You have never given us more than we could bare. And You have never left our side as our tower of refuge and strength. May we ALWAYS turn to You, moment to moment, trusting in Your ways and seeking Your Will for our lives and for the lives of our children. May our lives be a living testimony of Your Greatness, Your love and Your faithfulness. Almighty God, it is with great confidence that we come before You and ask in the name of Jesus, for healing of Mackenzie's leukemia. Thank You for allowing us to wait on You these past two weeks and forgive us for any periods of anxieties and doubt. We cast all of our cares upon You Lord, and we are greatful for the insights and incredible lessons You have shown us during this time of waiting. We totally surrender all to You and lay Mackenzie down at Your feet. She is Your child Lord and we know the plans You have for her are for good. We love You Lord and we praise You and worship You today and ALWAYS. May our lives be pleasing to You! And may we forever seek Your Will as we long to hear you say, "Well done child". In Jesus name I pray, Amen." ******************
Good morning. Not much going on here, as we wait for Mack's appointment on Thursday. I was woken up this morning by Mack's energetic, cheerful beckoning for breakfast and my first thought was, "what a gift to hear that little voice waking us all up this morning." How many times have I taken that for granted? We continue to wait on the Lord and trust in His faithfulness, as we are down on our knees, praying for healthy bone marrow. Please continue to ask for His mercy to rain down on Mackenzie and our family. I'm amazed at how my devotionals have spoked directly to my heart these last few weeks. Had to share this from this morning:
Psalm 89:1-2, “I will sing of the Lord's great love forever; with my mouth I will make your faithfulness known through all generations. I will declare that your love stands firm forever, that you established your faithfulness in heaven itself.” (NIV)
Devotion:
We waited and waited. Then finally, I stood in awe as the geyser, Old Faithful , spewed steaming water 150 feet into the air. The Yellowstone National Park ranger told us that it was myth that the geyser erupts every 96 minutes. He said it is faithful to spray the water, but not on man’s timetable.
Doesn’t that sound like God? Scripture repeatedly states that God is faithful beyond our imagination. However, sometimes we doubt. The problem is that we want Him to act in faithfulness according to our requests, standards, and time allotment. We especially feel that way when problems rattle our lives. We ask, “Where is the faithfulness of God right now?”
We want the Lord to react like a genie in a bottle. We call out our wishes and we demand that He bring about miraculous results. I recently witnessed this attitude in an unbelieving friend. She landed unexpectedly in the hospital with an undiagnosed problem. Frustrated she said, “I cried out to God last night and He didn’t help me! What kind of God is He?” Although, my friend never gave a thought about God until a crisis arose, she expected His immediate help when she called out. She demanded the Lord be faithful to her needs on her schedule. Her disappointment resulted in a defiant attitude of doubt.
In addition, I have discovered another intriguing similarity between the geyser, Old Faithful , and God’s faithfulness. The park guide explained after an earthquake, the time between eruptions lengthens. Earthquakes in 1959, 1983, and 1998 increased the average length between the geyser’s eruptions from 76 minutes to approximately 90 minutes. Just like Old Faithful , I have found that as God increases my faith, He sometimes increases the time between my “earthquake” and His rescue. By allowing a longer time span between crisis and aid, God brings me to believe in, rely on, and depend upon His yet unseen faithfulness.
Although doubt of God’s faithfulness may raise its ugly head, He has never been unfaithful to me. He may not rescue me as quick as I would like. He might answer my cry in a way I do not expect. However, He will always aid me in the manner that will help me increase my faith. He wants to teach me to sing of His faithfulness regardless of my circumstances as the psalmist did.
God is our refuge and strength,
an ever-present help in trouble.
Therefore we will not fear, though the earth give way
and the mountains fall into the heart of the sea,
though its waters roar and foam
and the mountains quake with their surging . . .
"Be still, and know that I am God;
I will be exalted among the nations,
I will be exalted in the earth."
Psalm 46:1-3, 10 (NIV).
Yes, just as I stood and waited in awe for Old Faithful in Yellowstone National Park , I will wait in anticipation for God to show Himself faithful in my life. I will “be still and know He is God.” Will you wait with me?
Prayer:
Dear Lord, help me to recognize Your faithfulness in my life. Aid me in understanding that You work according to Your faithfulness and not my desires. I pray that You increase my faith. Help me to relax and know that You are God. In Jesus’ Name, Amen.
Thanks for rallying the troops, sounding the horns and bringing so much aid to our wounded spirits these last two weeks. I will try to update from Childrens business center on Thursday when we have results. We are hoping to head to Cincinnati from our appointment if things are well. Please continue to pray for Mack's body to tolerate the IVIG infusion with NO REACTIONS and that our time in Cincinnati would be a time of bonding and healing. Lindsay and Taylor are looking forward to spending more time with me (and of course missing school and hanging out at the pool/hot tub is a perk). We'd also like to go to the Newport Aquarium, but all this pending Mack's health status. Keep praying, you guys have been fighting hard for us and we are sooooooo grateful! Much love and more on Thursday, Amy
Thursday, January 11, 2007 7:35 AM CST
********saturday Jan. 13 9:00am update******** Feeling the power of your prayers and the presence of God in our home as He holds us close. What an amazing place of rest and peace. Thank you for praying so fervently for our family and for helping to lift the ugly, heavy blanket of fear and anxiety that was suffocating us last week. We physically and emotionally have felt a greater peace and calm that we know, under our circumstances, is only possible because of God. We definately have moments where "the waves" come into our periphery. That sinking pit in your stomach will stop you in your tracks and jolt your life, but we are determined to keep our gaze on our mighty, powerful and awesome God, surrendering all, and trusting in His perfect plan as we walk through the stormy waters to Him. He is so much bigger than leukemia and heart defects and our circumstances and HE IS IN CONTROL! What an awesome piece of concrete truth to hold to. Please continue to pray for healing of Mack's bone marrow and the production of healthy cells. I envision a factory and an intricate assembly line efficiently producing "the product". At the end of the process, before going out to the market, there is always an "inspector" to ensure the product is acceptable. I'm sure you've all seen those stickers "inspected #211". I see Mack's cells, going through this process and at the end before coming out of her bone marrow, each one has a sticker, "inspected by GOD". Please join me in asking God to inspect each cell and run her bone marrow factory with perfection. He is able! Please continue to pray for peace, mercy and grace along with healthy cells that can be seen at our appointment on Thursday. We have an appt. in Cincinnati on Friday, and plan to leave right from our appt. at Childrens to drive to Cinci. Keep praying for us all, your prayers are making a big impact on our lives. More tomorrow. Much love, Amy*************
Thanks for all your prayers, today is a good morning. Feeling more peace and calm than I have the last week. Doesn't mean the waiting is easy, but the more I surrender, the more peace I gain and my burdens feel lighter. Feeling Gods presence this morning as He is carrying us and holding us close. There is no better place than in HIS arms where we can find true peace and rest. Mack's feeling great, but the cold she is fighting is still lingering. Praying that it will resolve and her bone marrow will have a chance to recovery and produce healthy cells for accurate results next Thursday. She also continues to have ankle pain, which she may have x-rayed next Thursday too. Please continue to pray for God to lead and guide us along this journey as He has soooooo faithfully done all along. And continued prayers for HEALTHY CELLS and NO REACTIONS to IVIG, along with freedom from all pain and resoultion to this virus. I'll let you know when we are returning to Cinci, sounds like maybe in the next week or two. More tomorrow. Much love, Amy
The Doorkeeper
There are times in our lives where we must watch
and wait for God's perfect will.
Perhaps it's circumstances only known by Him
or a need only He could fill.
But whatever the reason...the time or the season
we find ourselves seeking God's face,
For the wisdom He offers...for what only He knows
about us & our needs in this place.
And while the time of waiting places us in a pause
it also postures us in a very good way.
For the One who holds the future in the palm of His hand
is the same God that we seek when we pray.
And the season of seeking & searching out His will
also teaches us God's timing is supreme.
For we end up learning His plans far surpass
all of us and our mere mortal dreams.
We discover the true value of waiting on God
is that it teaches us to truly rely.
For God is the Giver of every single provision
and our water when we're thirsty & dry.
God proves Himself faithful to answer our cries
for every need that we ask Him to fill.
And when the time is right...He goes ahead like a doorkeeper
and holds open the door of His will.
© Sheila Gosney
Tuesday, January 9, 2007 2:32 PM CST
*****WED Jan. 10th 4pm update***** Just wanted you all to know that we are hanging in there. There are good moments and then sad ones, but we are doing our best to remain positive. The kids seem very concerned and have lots of questions, lots of tears and lots of LOVE for their baby sister! They are very "clingy" to her and want to be by her all the time. I can't imagine being 11 years old and having my little sister ask me, "Tee Tee, am I going to die?" It's difficult enough for me to process and I'm 36. These are issues I never imagined the kids would have to deal with at such a young age and I remain on my knees pleading with our FAther to help us process these issues and then be able to put them away with a clean bill of health for Mack next week! I'm still waiting to hear from Cincinnati, but they would like Mack to come back as soon as they can fit her into their day hospital schedule to have her IVIG infusion. Please pray for her body to tolerate the IVIG and NO MORE REACTIONS!!!! And continued prayers for HEALTHY BONE MARROW AND HEALTHY CELLS!!!!! Thanks for your continued support and amazing love for our family. More tomorrow. Much love, Amy****************
I knew the "waiting" would be hard, I just didn't realize how hard it would be. I feel paralyzed. The heaviness that looms over me is suffocating and I desperately want to shed it! I have to admit, I've been struggling as my thoughts keep going back to all those dark places arousing all types of emotions from the past. I am feeling so traumatized from all the hardships we've been through over the past 12 years. When I walk into the hospital, I feel like a Vietnam Vet walking into the movie Saving Private Ryan. My thought patterns have changed through all the trauma and it is more difficult for me to keep them in check. Of course, satan likes to throw salt in that open wound and nod and push on the already sore bruises. I was going to draw another CBC on Thursday to see where things are at even though our follow up is not until the 18th. I realized that I was desperately searching and trying to grasp for peace, comfort and assurance from a lab value instead of my Heavenly Father. I also struggle with "waiting" and realized I may have been trying to gain some sort of control by getting info earlier than planned. It will be a long nine days, but I will continue to turn to Him for comfort and peace and trust in His plan for Mackenzie's life. Please pray for God's peace that surpasses all understanding to wash over me and clear out all the negativity. That He would hold my thoughts captive and lift my chin to Him, since in my weakness, I am struggling to do that on my own. I feel like Peter when he got out of the boat and was fine until he took his eyes off Jesus and looked at the HUGE waves and then he sank. I saw the HUGE waves today and they were called relapse. I sank. I am ashamed to have taken my eyes of Jesus and have asked Him for forgiveness. Why do we have doubt? I am determined to walk to Him across those stormy waves until HE calms the storm. We have an 8:30 clinic appointment at Childrens next Thursday January 18th. We also have a 10:30 appt. in the sedation suite in the event that Mackenzie would need a bone marrow aspiration. PLEASE pray for healing of Mack's bone marrow, destruction of any leukemic cells, production of healthy cells and a perfectly clean CBC so that we can avoid the bone marrow aspiration and sedation suite all together. Praying the storm calms at 8:30am Thursday January 18th 2007. Please, please fix your eyes on Jesus and walk through the stormy waters with us. We love you all!
As I'm in waters of the Burmuda triangle struggling to keep my head above water, Mack's laying on the beach of sunny Hawaii, completely unphased by anything life has brought her way. She hasn't missed a beat, feeling great, full of smiles and playful as usual. For this we give praise!!!!! More tomorrow. Love, Amy
PS If you haven't added your name and info to Mackenzie's prayer warrior map above, please take the time to do so. It has been of great encouragement to us!
Sunday, January 7, 2007 9:12 AM CST
****posted a few new pics*********
Hopefully you've seen the tracking map we added to Mack's site. We are so excited to see what part of the world Mack's prayers and support are coming from. We continue to be amazed at how God intertwines lives and it is so encouraging for us to see all those little dots on the map of the entire world! We are so blessed to be surrounded by so many wonderful people. We love reading all the messages too! If you click on the map and then click on "View all people" it will bring up the list of names, places and messages representing all the dots on the map. Or you can click on an individual dot to see that specific information. This particular software also allows us to do many neat things when it comes to printing all the information and we look forward to making a keepsake for Mackenzie. Please take the time to add yourself to her list of prayer warriors. Things here are well for the moment, but still feels like we have this heaviness looming over our heads. Mackenzie is feeling great and we are thankful for that. We continue to fall to our knees and pray for healing of Mack's bone marrow and for next CBC to show nothing but healthy cells. Two weeks seems like a long time to wait, but I guess I still need practice in waiting on the Lord with patience, faith and trust. I am learning. Looks like we will also need to head back to Cinci for an overnight to give Mack her IVIG since she had such a bad reaction when we began her infusion at home. I'll know more of those details on Tuesday. Please continue to pray for our entire family. For healing and protection of Mackenzie, for peace and comfort and for stability that can ONLY come by rooting ourselves deeper and deeper in Him. Another great devotional today that I thought I'd share.
Key Verse:
“Come to me…” Matthew 11:28 (NIV)
Devotion:
Toddlers invaded our house last week. First it was one, then two, then a house full! We love it when the grandkids come to visit. They teach us so many things about life. I’m sure that is why Jesus said, unless we come to him like little children we just won’t get it.
As my grandson began his journey up from the basement play room, his hands were loaded with toys; a truck and action figure in one hand, a ball in the other and a book tucked under his arm. His tiny finger reached for the railing, but his arms were gripping his toys so tightly that he couldn’t grab it. He was ready to join Grandma in the kitchen for some snacks, but he simply couldn’t bear to leave his toys behind.
I watched him struggle as he took that first step. He wobbled to and fro, so I reached out my hand to help. “I do it!” he proclaimed. I kept my hand outstretched offering, but never forcing my help. Finally one foot triumphantly reached the first riser, he glanced up as if to say, “See, I can do it.” As his weight shifted to pull the other leg up, the book at his side began to slip. He paused to readjust, the ball popped from his hand bouncing down the steps.
His lip quivered, but he was not giving up the battle. Looking at me now would just be too humiliating, so he pretended not to see me or my hand. With each step came the same scenario; wobbling, slipping, readjusting, frustration. His eyelashes that bat my face with kisses lost the battle of refraining a pool of tears. They spilled onto his face. Fingers that once gripped his treasures, purposely loosened and reached for my hand.
Aren’t we so like that with our Father? He stands with outstretched arms saying, “Come to me…” and we won’t make eye contact because we are holding on to our treasures. And often it just seems too humiliating to admit we are refusing to let go. It may not be a Ninja Turtle, a book or a ball, but we hold onto to other treasures. Our jobs, our family, our security, our past and even our service to Christ often receive a stronghold grip.
We would rather wobble through sorrow than give up control. We would rather slip and stumble than let go of our pride. We would rather readjust our grip than reach out.
When my grandson was safe and secure at the top of the stairs, I picked up all of his treasures and brought them to him. Then we shared some quality time and a wonderful snack. Hmmm…I wonder what Christ would give us back if we surrendered it all?
Isn’t it time we became like little children and totally trust the outstretched, nail- scarred hands that beckon us, “Come to me….?”
My Prayer for Today:
Father, today I drop my treasures at Your feet and ask You to forgive me for hanging on so tightly to the things of this world. Break the strongholds in my life that keep me from drawing close to You. Teach me to trust You as I reach out and grab my Master’s hand. In Jesus’ Name, Amen.
Thanks again for all you do and for standing in the gap with us as we WAIT! Much love, Amy
Saturday, January 6, 2007 10:18 AM CST
****6:30pm update**** All is quiet in our house and I thought I'd share my devotional from today. It spoke to me.
"Isaiah 43:2 When you pass through the waters... they will not sweep over you." God does not open paths for us before we come to them, or provide help before help is needed. He does not remove obstacles out of our way before we reach them. Yet when we are at our point of need, God's hand is outstretched. Many people forget this truth and continually worry about difficulties they envision in the future. They expect God to open and clear many miles of road before them, but He promises to do it step by step, only as their need arises. You must be in the flood waters before you can claim God's promise.
Such a great reminder!!! Trying with all my might not to worry about the "difficulties I envision in the future". He's convicted me on this one and given me almost twelve years of trials to work on it. One would think I'd be good at it by now, but I still struggle. Mack's feeling well and continues to make us smile in the midst of uncertainty. More tomorrow. Love, Amy*********
This was my entry from Mack's myspage page this morning:
Redifining family
I'm feeling a little like I got run over by a truck this morning, a very familiar feeling left by the emotional roller coaster we ride. Yesterday was a tough day, but we are holding on to hope and keeping Mackenzie in an open hand before our gracious Lord. We trust in His plan, no matter what it reveals, because we know His plans are perfect. Of course, we continue to stay on our knees pleading with Him for more mercy and healing of our sweet little girl, but we also know that whatever our path shall bring, He will see us through and meet all of our needs. Unfortunately, yesterdays test results didn't give us any definative answers, but showed some signs that Mackenzie's bone marrow may be pouring out abnormal cells in an attempt to recover or fight infection and not necessarily relapse. On the down side, we won't really know for sure what is going on in her little body for a few weeks. Her doctors have taken her off all of her chemotherapy for two weeks to let her bone marrow settle at which time we will repeat her labs and see how things look. If she continues to have these "immature" cells, then a bone marrow aspiration will be done at that time. The waiting is difficult, but also gives us the opportunity to storm the gates of heaven, petitioning the Lord for healing on Macks behalf. We ask you all to pray specifically for Mack's bone marrow to produce healthy cells and that IF there are any leukemic cells left in her body, that they would be destroyed. Thank you for all the comments and messages and love and support you soooo generously pour out to our family. We praise God everyday for bringing you all into our lives and are so grateful for your willingness to travel this journey with us. Your words of encouragement are a source of strength as our minds naturally want to focus on all the "what if's". It's very difficult staying in the moment and not worrying about tomorrow. It is a choice and it takes effort and energy to enjoy today when we are engulfed with so much uncertainty. But I refuse to let those negative thoughts rob me of our joy today. Being patient and waiting on the Lord is one of the most difficult lessons I have been learning through all of our trials. We are grateful to have such an amazing support system to help us keep our thoughts in check. You will most likely never realize how much you all mean to us and how your prayers and encouragement have played a role in our lives. It is these types of gifts that you have shared with us that are lasting and are worth more than any material possession on this earth. It is these types of gifts that change and impact lives in a positive way. It is these types of gifts that redefine the structure and meaning of "family". And if you ever find yourself on the receiving end of these gifts as we have, you will know and understand their beauty. Thank you so much for all you do! Please continue PUSHing and PULLing for our sweet Mack and together we will get through one day at a time! Sending you all many hugs, lots of love and much gratitude, Amy
Thursday, January 4, 2007 5:17 PM CST
******3pm UPDATE*********Just got back from Childrens... where to begin? Mackenzie's labs still revealed "immature cells" when examined under the microscope, but there were some other cells found that may indicate that these "immature cells" are being pushed out of her bone marrow as it is trying to recover and not necessarily an indication of relapse. Or they could possibly be being pushed out as her body is trying to fight this virus she has with a crippled immune system. Unfortunately, we don't have any conclusive answers and only time will tell. Her oncologist feels that it is most likely related to bone marrow recovery and therefore we are waiting to do the bone marrow aspiration, but she cannot rule out relapse at this time. All of her chemotherapy has been stopped for two weeks to give her body a chance to recover at which time we will check her labs again. It will be a long two weeks and we ask that you continue to bring Mack before the Lord and ask for continued healing and protection along with peace for Steve and I. Your words of encouragement mean so much to us as the waiting is so difficult. Thank you for all the notes and love you have shared with us. If Mack's labs still reveal abnormal cells in two weeks, then the bone marrow aspiration will be done at that time. Praying, with ALL that is within us, that her bone marrow produces perfectly healthy cells as it recovers these next two weeks. Please join us in praying for healing of Mackenzie's bone marrow. Also pray for God to comfort Mack as she has been asking us, "Am I going to die?" It's tough! Overall, we are thrilled that no leukemic cells were found today, but we don't feel like we are out of the woods yet. Let's walk through these next two weeks together and help us to keep our thoughts in check. I don't know what we would do without you all, but we love you so much. More tomorrow. Love, Amy***********
***********Friday, January 5th 6:20am Update******** Getting ready to head downtown with Mackenzie. It was a rough night last night. Mack had a bad reaction to her IVIG infusion that we restarted and we were unable to finish the dose. Please continue to pray fervently today for good CBC results and healing for Mackenzie. That Gods grace and mercy would wash over us with great impact even though we are undeserving of His amazing grace, and that He would spare us more hardships and remove the obstacles on our course. More later when we have some information. Love, Amy****************
I'm coming to the computer with many mixed emotions. Apparently, the lab in Cincinnati saw some "immature" or "blast-like" cells on Mack's CBC which may or may not be indicative of relapse. The last two to three weeks I've been concerned about relapse with some funky lab values, but there are many things that can throw her labs off. Those red flags coupled with the latest findings are leaving us numb tonight. Our oncologist from Childrens just called and said we need to come downtown first thing in the morning so they can repeat the CBC and she can look at the smear herself. If there is any question, then they will proceed with a bone marrow aspiration tomorrow. Please pray for peace for Steve and I and mercy and grace for Mackenzie. And specifically we are asking prayers for healing of Mackenzie's bone marrow and a clean CBC tomorrow. I'm trying to process all of this and am really struggling. It's so hard to not be anxious with so many thoughts swirling through my head. Steve keeps telling me, "don't worry until we know we have something to worry about", but my human thought processes and my physical bodily response wants to "freak out". It all feels too overwhelming and too heavy for me to bare. I feel like I've been down this road one too many times and I want to run the other way. I don't know how to respond other than falling to my knees before our gracious, wonderful, powerful Savior and pleading for mercy and healing. Totally surrending all and laying helpless before Him asking Him to spare us from entering another valley. I'm tired, I'm weak, I'm broken, I'm spent at the meer glimpse of the deep, dark valley. "Oh Lord, my almighty God, my Father and creator, I am disheartened this eve and I know my enemy is near trying to defeat me. He whisper lies and plants idea's to draw me away from the truth and discourage me. Please Lord, send satan far away from my family. Send your angels to surround us and protect us from all harm. Draw us close and hold us. Lord we are in need of your healing. Physically, mentally, and emotionally we need Your healing and we turn only to You during our time of need. We KNOW You are fully capable of handling all of our needs and all of our cares. Mackenzie has been such a gift to our family and we are grateful for everyday she has been with us. Thank You for loving her more than we could ever imagine. Thank You for caring for her and watching over her. Lord, please continue to guide us on Your path for our lives. And we ask for the gift of health for our family. How we long to raise Mackie according to Your Will and watch her grow and enjoy her presence here on earth. Please Lord, let Your mercies be new tomorrow just as You promise. Allievate any anxieties as we hand them over to You and comfort us in this time of need. We praise You for all you have done in our lives and all You continue to do. We love you Lord. Amen." Please send out the SOS to all whom know and care about Mackenzie. Your prayers on this evening will carry us. I'll write again tomorrow as soon as we know any information. Much love, Amy
Wednesday, January 3, 2007 7:17 PM CST
Hello from Cincinnati! We had a very productive day today and were once again very impressed with the staff and facility here at Cincinnati Childrens. God is amazing how He continues to help us navigate through these difficult decisions and guides us as we walk blindly seeking the best care for Mack. We met with the immunologist for an extended period of time as they sorted through Macks medical history and devised a plan for the future. We learned a lot and feel very good about placing Macks care regarding immune issues in their care. They have restarted Mackenzie's monthly IVIG and I will give it when it arrives at home tomorrow. They do feel she has some underlying immune system problem, but wont be able to sort that out for years. Thus, her monthly IVIG will be given for a minimum of two to three years before they would even think about discontinuing it. They drew TONS of labs today to see if they could learn anything else about her immune function, but it is difficult because of the chemo she is on. Won't have those results for a week or two. They also said that she should never have a live vaccination again in her life and maybe never have any more vaccinations at all. That was music to my ears!!! We will need to return to Cinci in April and then every six months to a year after that for follow up. Its good to be connected and plugged into the system. The girls are already fighting over who gets to come with next time we come and Mack is fired up to come back to the pool here, she loves Cinci!!! Thank you so much for all your prayers! Our hearts are overflowing with thanksgiving for God's constant care. More tomorrow when we get home. Much love, Amy
Tuesday, January 2, 2007 4:57 PM CST
I can't believe the holidays have come and gone. We had such a wonderful time these past few weeks. We had lots of family and friends stay with us and the kids are already going through withdrawl. You would think four sisters would be enough for each, but apparently not. Christmas went down in the books as "Best Christmas EVER"!!!! I guess we needed that time to rejuvenate because last night Lindsay had a very scary arrythmia with her heart rate topping out around 200. She got very pale and sweaty and was having lots of chest pain. Fortunately, it only lasted about 15 minutes, but they were LONG minutes! Today I drew Mack's labs and gave her IV chemo. Her bone marrow is very sensitive right now for some reason and her immune system is still lacking. Her counts are low again and her Igg continues to plumet. Just found out tonight that we are headed for Cincinnati in the morning to see an immunologist there. PLEASE pray for wisdom and guidance for the doctors we consult with. Specific prayers for divine knowledge regarding Mackenzie's immune system and wisdom for how to proceed. My mom and I will leave in the morning and stay over one night. Also prayers for safe travel, protection for Mackenzie as her counts are so low and a stable heart for Lindsay while I am out of town. Thanks for being there for us and always ready to support us through prayer. I don't know how we'd make it without your prayers... they bring us great comfort! I'll try to update again tomorrow after the consult. Our appointment is at 2pm. Much love to you all, Amy
Thursday, December 21, 2006 10:27 AM CST
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 60 o 40 Her 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