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Monday, January 30, 2012 10:25 AM CST
Just wanted to let everyone know that we are doing well. Mackenzie has been reporting that her eye is less blurry and she seems to be seeing okay. We go back to Cincinnati next week for her usually monthly treatments and we will also see the eye doctor at that time. Hoping and praying for a great report!
I have to admit, I feel like I'm the Little Engine who Could, but I'm stuck trying to get up the hill. All these trips back and forth to Cincinnati along with working full time is really wearing on me. When Mack had her bone marrow transplant almost 5 years ago, we knew there would be a lot of follow up appointments, but I thought eventually we would get to a point where her visits would be once or twice a year. We have come to the realization that that just isn't going to happen. We have a very high maintenance little girl. With this knowledge and realization we have been asking ourselves if these monthly travel arrangement are something we can do for the long haul. And the answer to that is "no". This has opened up many thoughts and prayers about what to do and where to go. We have been praying for years about a potential move, thinking Cincinnati was the place we were meant to be, but after countless applications and hours of investigating and prayer, God has not opened a door or led us in this way. Everyone says I'm crazy to try and sell a house AND find jobs for both Steve and I in this economy today, but I say "nothing is impossible with God". We have walked to the edge of the cliff and jumped this week trusting God and giving Him the platform to navigate us through a new chapter in our lives as we put our house on the market. We have begun to seriously pursue moving to Arizona to be closer to family (and warm weather)! I have to admit, it is scary for us all... but we continue to let go of those fears and trust Him as we have seen His faithful provision over and over and over again in the past. Please pray that God would bring the right buyer, with the right finances at the right time to purchase our home. Also, that He would help us all be patient and wait on Him. I feel like we are kinda living in limbo again hoping to move and praying that the desires of our heart align with His Will. The waiting is BRUTAL! Pray for God's mercy and peace to rain down on us as we resiliantly hope in Him even in a world with a failing economy that says this is impossible! Prayers for God's wisdom and guidance to be evident and revealed to us in many ways to help us make wise choices in all the decisions that lie ahead. Praying that He would provide jobs in the Phoenix area for both Steve and I and that the girls will acclimate well. Praying for strenth and encouragment along the way as we wait for His plan to unfold. Praying that He would choose the location of our next home, where we can be connected and have rich and meaningful relationships while impacting others for God's glory. That He would facilitate easy friendships and relationships for us all. And that He would restore joy in our hearts as we long to serve and honor Him through this move. Praying that He would bless us indeed and place His favor upon us as we completely surrender all these things unto Him. Trusting Him to work out every detail and provide for every need. He IS able.
On top of all that... I was recently diagnosed with Barretts Esophagus. Years and years of stress has reaked havic on my digestive system. Praying that the cellular changes do not advance... and through diet, lifestyle and medications we can keep it in check. Everyone else has been doing great!
Needless to say, our family would really appreciate your prayers for health and healing along with God's divine intervention to impact our lives in powerful and positive ways.
Thanks again for always being there for us and for your willingness to help through prayer. Believe me, your prayers have and will continue to impact our lives in BIG ways!
Love you all!
Amy
Wednesday, January 4, 2012 11:52 AM CST
Our hotel adventures have come to a very pleasant end as we have relocated to the Hampton Inn Suites just down the street from the hospital. Praising God we were able to get moved and organized before her surgery so we can go back to a nice, clean place! Mack ended up going to the OR about a half hour early so it was probably about 12:45 EST that the surgery began. Sounds like it will be about 2-2 1/2 hours. She is just so easy going with all this hospital stuff it sure does make it easier on us! Please pray right now if you are reading this during her surgery time for divine skill to be displayed in the hands of Mackenzie's surgeon, prayers for the cataract to be removed easily and that they would NOT have to remove some of her "eye gel". Praying for safety and incredibly good eye sight when all is healed. Please pray for wisdom and patience for the doctor as he works on Mack's eye and makes decisions about the lens type and size, etc that will be implanted in Mackenzie's eye. Thanks for always being there to cover us in prayer. Love you all more than you'll ever know!
More when I get info.
Keep praying,
Amy
Wednesday, January 4, 2012 0:23 AM CST
Well we arrived in Cincinnati around 6pm today. The Ronald McDonald house was full so the hospital put us up in an Extended Stay hotel. It's 1:30am and I am having a hard time getting to sleep... not because of anxiety over Mack's surgery tomorrow, but because the hotel is really unsanitary and uncomfortable. I've been laying here for the past hour praying that God will open the door to move us to a cleaner, more comfortable location for the week. If you or anyone you know has any connections to help us get a hotel for a reasonable rate, please let me know asap. I was already prepared for a long day tomorrow, but I was not prepared for a sleepless night tonight. Please pray for sweet slumber if God happens to wake you up and lay us on your heart. :) Fortunately, we don't have to be to the hospital until 11:30 tomorrow. Mackenzie's surgery is scheduled for 1:15pm and I have no idea how long it will take, but I will be sure to keep you updated as I receive information. Mackenzie is actually super excited to have the surgery done and anxious to see how much it will improve her eye sight. She is, however, NOT looking forward to being NPO until late afternoon. Please pray for God's mercy and grace to provide for our housing needs in the 11th hour here and also for His peace to carrying Mack and fill her tummy until she can eat. Praying for God's hand to guide the surgeon and provide the best possible outcome for Mackenzie's vision. Once we get through this eye, we will come back and do it all over again on the R eye. Thursday she will have her first post op visit with the eye doctor and also see the Endocrinologist due to her lack of growth. Thus far, doctors have been unable to identify the reason for her lack of growth and rapid fall off the growth chart. Besides the multiple follow up eye appointments throughout the week, she will also have her phlebotomy treatment this week for her toxic iron levels. Her last level was 230 which is a huge improvement from the <2300 level she started at. She has to be under 200 for two consecutive months to stop treatment... we are getting there! She will also receive her monthly infusion of IVIG, the immune boost that her body will require monthly for the rest of her life as that part of her system never recovered after transplant.
Well, although I have total insomnia and am no where near sleepy... I suppose I should attempt sleep again. Thanks for all your love and prayers. I will update again tomorrow.
Much love,
Amy
Wednesday, December 7, 2011 12:52 AM CST
Things in our house have been busy as usual. I can't even remember what I journaled about in my last entry because it's been awhile and all of the days are a blur. Mackenzie continues to do awesome in 2nd grade again this year. Holding her back was one of the best decisions we've made. Her confidence level has grown by leaps and bounds and she enjoys her new classmates. We continue to make our monthly trips to Cincinnati for Mack's phlebotomy treatments and IVIG infusion which have been going well, next trip is Dec. 16th. Anxious to get Mackenzie's cataract surgery done to see if it helps with her vision. Left eye will be done in January and I'm not sure when the right eye will be scheduled, we'll just have to see how it goes. My mom and I will be in Cincinnati with Mack for the week of surgery due to the various follow up appointments.
Lexie continues to have night time vomitting a couple times a month. We saw a GI doctor at Milwaukee Childrens yesterday and they said she is a classic textbook case of Cyclical Vomiting Syndrome. Wow! Our kids never follow the textbook so strangely, this was good news to us! Very easy to treat... zofran at the onset of symptoms and hopefully she will out grow it within 5 years or so. She still has to have an upper GI and an abdominal ultrasound to rule out more serious issues, but the GI doc explained he does not anticipate it to show anything and it's more of a formality due to her persistent symptoms.
Lindsay has been doing great. A few break through arrhythmia's here and there but nothing major. She is going to the electophysiologist at the end of this month and we are hoping and praying she stays on the path of "status quo".
We have been praying so much about a potential move while looking at jobs and housing near Cincinnati, but it seems God has us right where he wants us at this time. With lots of closed doors and dead ends I've found myself wrestling with God a lot lately. As Mack's medical care is looking like a life time issue, we are trying to figure out what the best plan of action is for our family in the future. All the trips to Cincinnati are beginning to wear on me. Although I've been frustrated, I'm at peace now knowing without a doubt, I'm right where I should be... whether I like it or not. :-) Trusting in God's perfect plan, knowing He has much more wisdom than I do and His plan is better than any plan I could come up with.
We are all looking forward to a much needed break from work/school in a couple weeks and excited to celebrate the birth of Christ! I will post some new pictures with my next entry. Hope you all have a wonderful Christmas and cherish every moment with your family! Love to you all,
Amy
Monday, October 31, 2011 9:09 AM CDT
Just a quick update to let you know that Mackenzie's cataract surgery for her left eye has been scheduled for January 4th. We will stay in Cincinnati for the week due to the follow up appointments and potential post op risks. Her next appointments are November 17th for another MRI of her liver and the 18th for her phlebotomy treatment and IVIG infusion. Praying for a stable liver scan with no changes to any of the lesions on her liver. Also praying for the iron to continue to be "leached" out of her liver which was completely saturated before beginning the phlebotomy treatments. Last scan in May showed it was still loaded with iron. I think she's had about 16 phlebotomy treatments so far and her iron level has been consistently declining which is what we want it to do, but we still have a little ways to go in getting it all out of the liver.
Mack's IEP is scheduled for Thursday this week and we are anxious to hear about the progress she has been making this year. We are so pleased with the decision to repeat 2nd grade. She has been catching on to concepts more easily and her reading skills are improving. She feels more confident in her academic skills and really, really enjoys school.
Not much else going on besides "the usual" day in and day out's. Steve's getting ready to begin his basketball season next week and we are all dreading his absence for the next 4 months!
Continuing to pray about where God wants us to be and living surrendered to His Will. This is easier said than done. Please continue to pray for God to lead and guide our family!
Much love,
Amy
Wednesday, October 12, 2011 2:22 PM CDT
Just got home from another whirlwind trip to Cinci. Mack and I left Monday morning for all day appt's yesterday. Didn't get out of the hospital until 8:30ish last night so we ended up staying overnight in Cincinnati and driving home this morning. I was tired and it was too late to drive home last night. We saw the opthalmologist yesterday who determined that Mack has to have surgery on both eyes to have her cataracts removed. We are waiting for the surgery scheduler to call and set up the dates, but we were informed they are scheduling 3 months out so I'm guessing the Left eye (which is the worse eye) will be in January and the right eye in Feburary. We will most likely be staying in Cincinnati for the week of surgery for each eye due to the many follow up appointments. After the eye doctor we headed to Day Hospital, had labs drawn, got her phlebotomy treatment and IVIG infusion. All labs look good except Igg continues to drop and her iron level actually went up this month most likely from more iron leaching out of her liver. So for now, status quo, we stay the course. Going back next month to do it all over again and also have an MRI of her liver to check on those lesions. I can't believe it's been six months already since the last MRI!
Lexie has continued to be asymptomatic and all seems well. Unless there are changes, we'll just check another CBC in January. For now, we've already packed up all our concerns and put them away until January! :)
Lindsay has been in great health, not issues with her heart or lungs, praise God!
More next month.
Love,
Amy
Wednesday, September 21, 2011 2:19 PM CDT
Hooray for good news! Okay, where do I begin. Lexie's labs from Cincinnati found that she has Parvovirus which can make your blood counts low for a couple of months. Not sure that it explains why she was low for 6 months, but the good news is that she does not have any autoimmune diseases, cancers or other crazy things. Her WBC/ANC have bounced back to normal but her hemoglobin dropped and we are blaming this on the Parvo right now, packing it away and not worrying about it. We'll recheck a CBC in 3 months.
Mack did great with her leg surgery and the pathology report came back yesterday... all the margins are clear! Praise God! We are going tomorrow for her follow up appt to remove stitches and discuss the other suspicious spot on her knee that they noticed when she was in the OR. I'll let you know what transpires with that.
Things feel a little more settled now that some of these "in your face" unknowns are cleared and my load feels a little lighter :) Our next trip to Cinci is October 11th for Mack's phlebotomy treatment and IVIG infusion. She will also have her Opthalmology appointment and evaluation for her cataracts. I'll keep ya posted.
We continue to pray for wisdom and guidance about a potential move to the Cincinnati area in the future. Clearly, this would have to be a "God thing" to work out jobs for both Steve and I along with selling our home and finding new housing there. Seems impossible and overwhelming considering our economy today, but we serve a Great God who is capable of moving mountains and parting the sea! I lay it all down and pray that He would give us wisdom, guidance and direction for the next chapter of our life.
Much love to you all,
Amy
Sunday, September 11, 2011 5:16 PM CDT
**********FINALLY ADDED NEW PHOTOS!!!***********
Mack's surgery went well on Friday! The staff at HP Hospital were great... it was an easy in and out! Thank you Jesus! Pathology results won't be back for a couple of weeks. While they were in the OR, the dermatoloty surgeon saw another spot on Macks right knee that looks suspicious. We go back for a check up and stitches removal on Sept. 22 and she will take a closer look at the spot on her knee and decide if that needs to come off too. We may be doing this all over again. Prayers for a clean pathology report. She is recovering well, as a matter of fact, she was supposed to stay off her leg as much as possible for 3 days but I haven't been able to keep her down. She's a girl on the go! No PE for 4 weeks. Good luck with that one!
We are still waiting on Lexie's labs. Hoping to hear news by the end of the week, but it could be longer. Please continue to pray that we find answers... or better yet, the problems resolve!!! :)
We got Mackenzie's results and unfortunately her Igg level continues to drop and therefore we will restart the monthly infusion of IVIG to boost her immune system. This means she will need IVIG every month for the rest of her life. I posted on facebook "in the grand scheme of life... its just a minor inconvenience with a large price tag". In the future we will look into other options of giving the infusion near home, but for right now... Mack still requires a lot of follow ups in Cincinnati and we are at the hospital anyway. Not to mention both of our comfort level! Mack's iron level continues to decrease, but it may be several more months before her phlebotomy treatments are done.
Lindsay, Taylor and Kali had their Homecoming dance this weekend and so you can imagine the house has been buzzing!
That's about all for now. I'll keep you posted if anything new arises.
Love you all,
Amy
Sunday, September 4, 2011 7:52 AM CDT
***Tuesday 9-6-11 QUICK UPDATE*** Mack's labs came back. Igg is down to 398 so looks like she will be on IVIG for the rest of her life. We're okay with it... in the grand scheme of life it's a minor inconvenience. Her iron level came back at 350ish, just slightly down from last month. This was the first time we went a month in between treatments and on MRI last spring her liver was still very saturated so I'm assuming it will take awhile to "leach" it out. That's all the news I have for now. Everyone is feeling well. Next trip to Cinci is Oct. 11th unless something comes up with Lexie before then. I will let you know when I hear back on her labs. Keep praying! ********************
Our trip to Cincinnati Friday was pretty uneventful, for which we are grateful! On exam, Lexie appeared healthy and the nodes (although they are reactive)didn't seem to be concerning to our oncologist. They drew more labs to look for antibodies which could be attacking her own immune system... checking for some viral strains and also some autoimmune disorders. We will not have these labs back for a couple weeks. However, the repeat CBC showed a persistently low WBC count and increased lymphocytes, along with a lower ANC than before and a few other abnormalities. Although the numbers weren't way out of the range, (WBC 3.9, ANC 1170, Lymphs 57, segs 30, Eos 5) they seem to continue in the wrong direction and this did not make me feel good considering she has absolutely no symptoms of illness. For now, its a waiting game. Waiting for the lab results and follow up CBC's. Please pray for healing of Lexie's immune system and bone marrow. Praying for wisdom for her doctors and answers to be found.
Mack was a rock star! Waiting to hear her iron level and Igg level. Probably won't know those results until Tuesday because of the holiday weekend. Her CBC looks great... no issues. She continues to tolerate the phlebotomy treatments and we are hopeful those will be coming to an end in the near future. This Igg level will determine whether or not she will restart the monthly IVIG immune boost infusions during the cold/flu season (Oct-April). She has an appointment with an opthalmologist in Cincinnatie on Oct. 11th for an eval of her cataracts. I will keep you posted. She is also having surgery this Friday, Sept. 9th to remove more tissue from her right thigh due to the suspicious mole they already removed. Praying for a quick and easy outpatient procedure with good pathology results!
Thanks again for your relentless prayers.
Love you all,
Amy
Wednesday, August 24, 2011 4:33 PM CDT
WOW! I knew it had been a long time since I last posted, but I had no idea it was that long! I'm so sorry! Where do I begin... so much has been going on. Let's see... Mack has been receiving her phlebotomy treatments every 2 weeks in Cincinnati since the beginning of Feburary. She has tolerated the treatments well and its doing its job. Her ferritin (iron) levels were above 2300. High end of normal is 200! At our last visit I think her level was in the 300's so we are getting there! I'm hopeful she'll be done with that after a few more treatments. She had MRI's of her liver and heart, both of which revealed good news! There were no iron deposits in her heart and her heart function looks great. Her liver still seems loaded with iron, but hopefully the next scan will look better. The "lesions" or "spots" on her liver that were discovered last October have remained stable... no change in size or number! :) I think everyone feels fairly confident that these lesions are benign "tumors" called FNH caused by the radiation she had prior to transplant. Good news! Early this summer, Mackenzie had 2 "suspicious" spots removed from her right thigh. One of the spots was nothing and the other they are labeling a "reeds mole". Apparently these moles are rare and hard to differentiate not to mention they resemble melanoma. Because they don't know a lot about these moles and there were still cells in the margins where they cut the biopsy they want to go in and remove more tissue to be on the safe side. She is scheduled for surgery Sept. 9th. Praying all goes well and results are good. Mack also had all of her neuropsych testing done this summer and we are definitely seeing the late effects of radiation/transplant. Her IQ dropped significantly and she has been struggling with academics. We decided to hold her back and have her repeat 2nd grade. Fortunately, she was on board with the idea as one of her best friends is a year behind her and in class with her now. She has made a pretty smooth transition thus far. I asked her if kids were asking why she was still in 2nd grade and she said "yeah". I asked how she responded and she said "I told 'em I had cancer and it ruins your brain". Clearly the other kids had no further questions! Lastly, we just found out at Macks annual eye exam last week that she has cataracts which are impairing her vision. I guess that would make learning more difficult too! The cataracts are most likely from all the steroids she had during treatment for Leukemia. We waiting to see an Opthamologist in Cincinnati to see what the next step is... I'll keep you posted.
Lindsay had her cardiology work up this summer and all is well with her heart! Praise God! Mackenzie is so high maintenance with all of her appointments that it was a relief to be able to leave and not have more follow up appointments other than the usual!
Lastly, we've had a little bump in the road with Lexie. At her 6th grade physical this summer the pediatrician found some nodes in her neck and up high on her head. We waited a month and re-evaluated at which time she felt like there were more than the previous visit and at least one was bigger. A battery of blood work was done and thankfully everything looked good except for the fact that she has had a chronically low white blood cell count for the past 6 months and a low ANC level which is unexplainable. Therefore, they referred Lex to the hematologist/oncologist to make sure everything was okay. Since we already have our connections in Cincinnati, we opted to take her there for an evaluation. Her appointment is set for September 2nd. Please pray for good health to cover Lexie like a blanket and for peace for our family. I'd say we are coping very well and pretty confident that all will be fine, but the unknown is always a little unnerving. Not to mention all the baggage it brings up from the trauma of our past experiences.
Alright, I think I've brought you up to speed. Happy to report Steve, Taylor, Kali and myself are all healthy!
I will definitely update again and let you know what transpires at our Sept 2nd appointment. Until then... please continue to pray for our family!
Love you all,
Amy
Thursday, February 24, 2011 7:41 AM CST
Pretty uneventful trip to Cinci. Mackenzie always enjoys her visits which is a true testimony to the hospital! Child life always has some fun project for her to work on and of course there is a prize for every poke. Her port is acting finicky already and we have concerns that it will draw a large amount of volume for us every other week. Please pray for protection of Mack's vessels, that no scar tissue or clots would form as she seems to be prone to this. Also, continued prayers for her iron levels to decrease. Her ferritin level remains around 2000 but they said it will take months for us to see that start to decrease because she is so over saturated with iron. Influenza has been running through out house... 3 or the 5 girls were hit. Mack and Linds remain healthy, praise the Lord! Next appointment is March 11th. Please pray for protection for Mack from all illness and especially any line infection! Love you all!
Tuesday, February 8, 2011 2:36 PM CST
I've had every intention of posting an update every since this past Friday and I haven't found a minute until now so I apologize for the late entry. Mack had her port put back in on Friday and did great with the surgery. She stayed over night and got to see all her old nurses and was fired up to go to the playroom. It was really strange being back on the floor and every time I walked by Mack's old room it was like I was on auto pilot and wanted to head into that room. Fortunately I caught myself and didn't walk into a strangers room! The surgeon had a tough time threading the catheter from the port to Mackenzie's heart so it took several attemps and ultimately they had to go into the jugular vein in the left side of her neck. She had her first phlebotomy treatment for the high level of iron in her body and tolerated it well. She also had her monthly infusion of IVIG so she's all tanked up now. We will be travelling back and forth to Cincinnati every two weeks for treatment for the iron levels for the next 1-2 years. Seems like a lot of driving, I know, but... the comfort level and confidence she and I both have at Cincinnati Childrens makes it worth the drive. We've begun having insurance issues again and we ask your prayers for God's provision in working out all the little details with the insurance company so Mackenzie's treatments are covered. It's so frustrating! Also, hoping to go back on Steve's insurance in May and we are praying for a smooth transition and for no glitches in the system with that change. Other than that... all is well. We are still praying for God's wisdom and direction in a potential move to Cincinnati. Seems impossible that Steve and I would both be able to find jobs at the right salary, in the right location, at the right time and sell our house and all the other things that would go along with moving, but I am confident that God will provide if it is within His Will. I think we've seen many impossible things over the course of the last 15 years and know for sure that NOTHING is impossible with God. And worst case senerio, if no doors are opened, we stay put and have peace knowing that this is where God wants us.
Mack's next appointment in Cinci is Feb. 19th. Please continue to pray for the excess iron in her body to be removed quickly and without complication over the next year. And that her organs would all be protected from the toxic effects of this extra iron and their function would be preserved. Also, continued prayers for the lesions in Mackenzie's liver to "be gone" (those are the words that just came to me). They will continue to follow the lesions through ultrasounds and MRI's. I think the next MRI is scheduled for May.
Thanks again for keeping up with our journey. I know at times it seems exhausting and I think "how easy it would be to just go on with your lives and forget about us", but we REALLY appreciate all of your love and support. I will be more diligent in posting updates again now that her care has become more involved and "active".
Thanks for everything.
Sending our love to you all!
Amy
Sunday, January 23, 2011 5:46 PM CST
We have a plan! Really liked the hematologist we met with on Friday. We are moving forward with putting Mack's port back in on Feb. 4th and she will be admitted (hopefully just for the night) to have her first phlebotomy treatment and IVIG. Then she will have about 8 ounces of blood removed via her port every two weeks (as tolerated) for about a year to rid her body of all the extra iron. Praying she tolerates the procedure without feeling sick or getting dizzy, etc. Also praying that it doesn't make her even more tired and lethargic than she already is! She is doing amazingly well with all this news... such a trooper. Steve and I are whirling with thoughts and ideas about the future and the constant travelling back and forth to Cinci. Please pray for wisdom and direction as we explore all of our options.
Mack has also been complaining about leg pain and feeling dizzy and "her bed spinning when she closes her eyes". These are all symptoms that tend to make us nervous and apprehensive. We will talk more with the doctors when we are in Cinci in 2 weeks. Please continue to pray for all these abnormal symptoms to resolve and for Mack to feel great!
Everyone else is doing well and not much other news to share. I will certainly update again on the 4th unless something changes before then.
Much love,
Amy
Wednesday, January 12, 2011 7:29 PM CST
Good news and bad news... first the good. Mack's liver MRI was stable. The spots were the same in number and size and the radiologist still felt they were FNH (focal nodular hyperplasia) which basically means begnign tumors most likely from the total body radiation she had. Her Igg level has stabilized now that she has been getting monthly infusions of IVIG for 3 months. BUT, since her organs appeared so "dark" on MRI they decided to do some iron studies which revealed Mack has toxic levels of iron in her body. They think this is from all the blood transfusions she has had, but we are going to see the hemotologist next week (friday the 21st) and they are going to draw some genetic tests to make sure it is not a genetic condition where she can't metabolize iron. The plan as of now is that she will be admitted in Cinci on Feb 4th to have her port placed and she will begin chelation/phlebotomy therapy to get rid of the extra iron. If the plan stays as I understand it, basically they will take blood from her every month which will force her body to make new cells so the iron will leave the organs and attach to the new hemoglobin. Sounds like this will be a 1-2 year monthly process in addition to her monthly ivig infusion. There are a few other options with oral chelation and subcutaneous infusions but there is concern about making her liver metabolizing these drugs and stressing her liver out. Also, the oral agent involves drinking large volumes of liquid chelation daily and i don't really think that will fly with Mack. We are VERY sad that she has to have her port put back in especially after all the trouble it has given us in the past. If you remember she had jugular clots and an SVC obstruction that she had to have a stent placed in her heart for not to mention the numerous infections. Yes, this means that EVERYTIME she gets a fever she will have to go to the hospital for cultures/antibiotics etc. ugh!!! But in the grand scheme of life, they caught this problem early and it is treatable and we just have to do what we have to do. Unfortunately, Mack took the port news very hard, but is quickly coming to terms with it. She is the most positive little one! Please pray for an easy port placement, and wisdom for the doctors in making decisions for mackenzie's care.
Lets see what else has been going on... Lindsay had a stress test before Christmas that reveal she was in atrial fibrillation. She wore a monitor for a few days which also showed she apparently goes in and out of this rhythm all the time and doesn't even know it. After seeing the electophysiologist they decided to sit tight and watch her for now. More meds or pace maker could be in her future.
Christmas was wonderful. Our au pair from Germany, Regina, was here for 2 weeks to visit over the holidays and we had a blast. We went up north and went tubing and night sledding... lots of fun memories. Steve's dad had surgery for melanoma which was diagnosed just before Thanksgiving. Praise the Lord his lymph nodes were clean!
Not much else going on. Just finding that there are not enough hours in the day to get done everything that needs to get done! Work has been super busy for both Steve and I. Steve is in the middle of his coaching season and we just cross paths here and there.
I will update again next week after i speak with the hematologist, but i think ive caught you up to speed. i'm so sorry for the lack of journal entries, but things WERE relatively calm on the health front. Thanks for your continued love, prayers and support.
Much love,
Amy
Tuesday, December 7, 2010 7:34 AM CST
We had a whirlwind trip to Cinci this month. I took Mack and 6 other kids with me, am I insane?!?!? We had car trouble on the way down and I ended up buying a new van... yes, alone... with SEVEN children! Crazy, I know, but it all worked out by the hand of God!
Mack did awesome with her IVIG, levels were still low despite receiving it last month so they increased the concentration. Her liver ultrasound was stable. Last month they saw 2 spots and this month they were only able to see one and the one they did see was the same size. She will have the big MRI scan again when we go back on Jan. 6th and 7th. She's actually going to be seeing several doctors between ENT, Oncology, Physical Therapy, possibly immunology and possibly a head ache specialist when we return in January. I can't believe she actually LOVES going to the hospital... truly, she looks forward to it! I think this is about the best testimony anyone could give for the quality of care they provide in Cinci. It is such a blessing.
I can't believe Christmas is coming so quickly. Regina, our au pair from Germany will be joining us for 2 weeks over the holidays. I haven't even started to shop, the thought alone is kinda paralyzing this year... overwhelming! But, my parents are coming in today from Arizona and will be in town until mid January so as usual it will be grandma to the rescue! :-)
I hope you all have a wonderful holiday season. We are very thankful for all of your love and support for our family!
Much love,
Amy
Monday, November 29, 2010 1:47 PM CST
Hope you all had a great Thanksgiving... we certainly enjoyed every minute of our time together and with Steve's family in Minnesota. I honestly can't believe 5 weeks have gone by since we were last in Cincinnati. Boy... when you're traveling down every month, it sure makes the time fly by! We are heading out on Thursday and I'm taking the older girls and 3 of their friends with this trip because their favorite band happens to be playing just up the road from our hotel. There's alot of excitement in the Johnson house over this trip! We usually try to make our trips to Cinci fun, but this is a little over the top for us! haha. Mack and I will be spending all of Friday at the hospital. Her liver scan will be in the morning and then we will be in day hospital for her oncology visit and IVIG infusion. We should have the liver ultrasound results while we are there. Praying that no spots will be detected, believing in the powerful healing hand of God and trusting in his faithful loving care for our family. I just read a book called "The boy who came back from Heaven" by Kevin Malarkey. THIS is the book that I would have written! Nearly all of our experience parallel eachother which only proves even further that God is real and present today. Everyday I fall more and more in love with our Heavenly Father! I would highly recommend reading this book... it's so good.
We have been super busy trying to keep up with the day in's and out's of life. If all goes well in Cinci, we won't return until Jan 6th and 7th when Mack will have the big MRI scans of her liver again, get her IVIG infusion, see the oncologist and an ENT due to frequent ear infections. I know she is supposed to see the immunologist at some point soon, but not sure if it will be that visit or not. We are looking forward to Christmas break and time off of work and school!!! Regina, our au pair from Germany, is joining us for 2 weeks over Christmas break. It seems impossible that 2 years have gone by since she was here!
I think that is about all for now. I will definitely take my laptop to the hospital and give you an update from there on Friday. Please continue to pray for healing of Mackenzie's liver and continued healing of her immune system. Praying specifically that all the spots on her liver would be gone. Thanks again for covering us in prayer. I'll keep you posted.
Love you all!
Amy
Sunday, October 31, 2010 8:00 AM CDT
I finally heard from Mack's doctors and they have decided not to biopsy her liver. As new information arises, the plan continues to change. After further review of her MRI and ultrasounds and determining the needle biopsy was not an option, the also decided the surgical biopsy was not a great option either. I guess through the surgical biopsy they would only have access to the surface of the liver, but her nodules are deep within the liver. He also said they took into consideration the fact that there was growing confidence in the MRI results showing benign tumors. I think this is good news, and I'm thrilled that we don't have to endure another procedure at this time, but the bottom line is we still don't really know what all those "spots" are on her liver. Please continue to pray for healing of Mack's liver.
We will be going back to Cinci on Dec. 4th for IVIG and another ultrasound of Mackenzies liver. If that looks stable or "unchanged" we'll come home. Then back again Jan 7th when they will do extensive imaging through MRI again. So, we continue to hold her in a open hand before our merciful God and pray for the gift of health!
Mackenzie is super excited to go trick or treating this afternoon in her Scooby Doo costume. I will try to post some new pictures later in the day. Thanks again for always being there for us. Its amazing to be surrounded by so much love!
xoxo
Amy
Wednesday, October 27, 2010 12:00 AM CDT
********Thursdy 10-28-10 Update*****
Just wanted you to know that we made it back from Cinci. Even though we got back in the middle of the night, Mack was up and ready for school this morning. It was pajama day and she was not about to miss that! I will be anxiously waiting to hear from the doctors tomorrow to see what they decided as far as the biopsy goes. We may be heading back to Cinci if they want to proceed with the surgical biopsy. I will let you know as soon as I get the phone call. Please continue to pray for wisdom for all involved in Mack's care. Love you all! Amy
Ohhhhhhhhh... it is 75 degrees and sunny outside, absolutely beautiful, but we are here at the hospital. We decided to treat Mack with IVIG and are currently waiting to get her infusion. Its pretty much an all day event so we are hoping to leave around dinner time/early evening and drive back home to IL. She does have a history of some pretty severe reactions in the past so if you are reading this afternoon, please pray for protection from any reaction and that she would tolerate the infusion well. Since we are restarting the IVIG, we are now committed to coming to Cinci once a month for the infusion from now until May. We felt it was best for Mack IF they did decide to do the surgical biopsy in the near future, we wanted her immune system to be at a better place. OR, if they decide that they want to wait, watch and follow the liver then I feel its best that she been seen monthly anyway so someone is examining her, looking at labs and obtaining films as needed. It's just a better way of monitoring and the most safe approach for Mack. We really see the value in continuity of care and everyone here knows Mackenzie so well. Not to mention she absolutely loves this place and looks forward to coming every single time! Seriously, she was looking forward to spending the night here... go figure!
Well, they are getting ready to start the IV - again- I guess this means another prize. I will update later in the day and let you know how things are going.
Much love to you all,
Amy
Tuesday, October 26, 2010 6:41 PM CDT
Well, in typical Johnson fashion we continue to live in the "gray". Nothing is black or white when it comes to medical issues and my kids never follow the text book. Life changes from moment to moment for us and this is just another example. Maybe it was Gods divine intervention or protection for Mack, but for some reason... the surgeon who was going to do the needle biopsy tomorrow decided he felt it was too risky and changed his mind. I guess because of where the "spot" was he didn't feel he could get to it, but he saw the films yesterday when they said it was a "go" and we scheduled the biopsy so I don't really know what changed his mind. At any rate, in order to obtain the biopsy, Mack would actually have to have surgery and its a big deal. So our oncologist consulted some doctors within the hospital and some without to see if we should move forward with the biopsy and it was a mixed bag. Half the doctors said yes and half said no... those who have followed our journey are not surprised, this is how our road has been, nothing is clear, cut and dry. Now we must factor in all the risks and see if the benefits truly outweigh the risks involved. Our oncologist did not want to make this decision alone so he is going to present Mack's case at their big team meeting and make a collaborative decision. I think he (and we) are leaning towards holding off and following the spots through MRIs and Ultrasounds. Her lab work came back today and they pretty much ruled out the typical infections such as adenovirus and epstein bar virus, plus her CBC looks perfect and she is not symptomatic so we are pretty confident it is not infection. The liver cancer specialist looked at her films today and he did not think it looked typical for cancer so it appears things are pointing towards the "benign tumors". So, it looks like we might actually be going home tomorrow and waiting for the doctors to consult and if she needs the surgery, then we'd schedule it and come back.
On another note... her Igg level came back today and it was lower than its been in the last 2 years. She usually hangs in the mid to upper 500's which is low to begin with, but today she was 414. No one knows why she still seems to have the same immune problem she had before transplant. The transplant was supposed to fix that, along with the leukemia. We are on the fence about whether or not to restart the monthly infusions of IVIG and so are her doctors. We are waiting for some more immunology labs to come back to make the final decision on that.
So, whats the next step? Waiting! We will be waiting for a call from our oncologist with more direction on all the current issues on our plate. Hoping to hear from him on Friday. Our plan is to leave for home tomorrow, but tonight we are trying to decide if she should get IVIG before we leave. Please pray for God to give us wisdom, to speak to us directly and provide direction and clear answers in this area. We really need some wisdom from above because I just don't know what the right answer is.
Well, through all the phone calls and new information and change in plans, we spent the day at the mall, met Cody Simpson from Radio Disney, bought Mack a pillow pet so her life is complete and now were watching Glee. Please continue to pray for specific wisdom for Macks doctors regarding whether or not she really needs the biopsy/surgery and wisdom for us as to whether or not she needs IVIG replacement. Thanks for all your love and support!
More tomorrow!
Much love,
Amy
Monday, October 25, 2010 7:13 PM CDT
Holy Cow it has been a LOOOONNNGGG day! I am so sorry I am just finally getting to update you all. Mack had her MRI this morning and she did awesome. She was like a statue in the MRI machine for 1 hour and 40 minutes! What a trooper. When we were in clinic, our oncologist came to let us know that they were very uncertain about what they were seeing in the liver and everyone was concerned. Apparently there are 5-10 lesions, not just one. I could literally feel the blood draining from my face as we were having this conversation. It was like flashbacks to so many other difficult "lets go in a conference room and talk" type conversations. We discussed the range of possiblities, range of treatment and range of outcomes which were from one extreme to another. From what I understand, the radiologists were all in debate for much of the day about what these lesions were. The technology was supposed to give us those answers. The lesions look more typical of the benign type tumors but they don't generally see them in abundance and they were appearing more "light" than normal because her organs appear more "dark" than normal due to high iron in her body from the numerous blood transfusions she has had. So, they decided to order a biopsy to know for sure what it is. In preparation for the biopsy, we had to have another ultrasound and then more labs today. Her biopsy is scheduled for Wednesday morning at 9:30. The procedure should take about an hour and then she will have to stay overnight for observation. We are hoping to be back home on Thursday. The biopsy results won't be back until early next week, so we thought we'd go home to wait for the results and then we will go from there. If the spots are these benign tumors, they wont do anything but monitor them. If they are some proliferation of white blood cells due to her immune system problem, then she will be treated with Rotuxamab (sp??), if it is an infection, that will be treated with something else and if it is a secondary cancer...well, I just cant even go there.
Thank you so much for all your prayers through out the day today. It was another roller coaster day and once again, we find ourselves trying to "hurry up and wait". Ugh! Not much on the agenda for tomorrow but finding something fun to do in Cinci!!! I will definitely have my computer on Wed. for the biopsy and will update you throughout the day. Please pray for wisdom for her doctors, for God's hand to guide the needle during the biopsy and give the doctor skills and techniques to tenderly care for Mack. Praying for "benign lesions", for mercy and grace in what ever lies ahead and comfort for Mackenzie. Praying that angels stand guard in the OR on Wed and surround her hospital room to protect her from all harm. Praying for healing of Mackenzie's liver, that God would give her body exactly what she needs or as Mack would say, "that God would tell her cells to behave" Through it all, Mack is doing great. She was in the pool at our hotel room last night and has all kinds of fun ideas for tomorrow. She got to pick THREE prizes because she had to get 3 pokes and she was brave as ever! Taylor and Kali are here in Cinci with us and Lindsay and Lexie are staying with friends. Please pray for the girls to have peace and understanding even with all the uncertainty life continues to bring us.
I truly am so, so thankful for each and every one of you. Love you all so much! Keep PUSHing and PULLing for our sweet Mack.
More tomorrow,
Amy
Saturday, October 16, 2010 5:14 PM CDT
*****Thursday, October 21, 2010****JUST LETTING YOU ALL KNOW THAT WE ARE LEAVING FOR CINCI ON SUNDAY. MACKENZIE'S MRI IS SCHEDULED FOR 10AM ON MONDAY AND WILL BE SEEN IN THE ONCOLOGY CLINIC AFTER THAT. WE SHOULD HAVE SOME RESULTS BY LATE AFTERNOON ON MONDAY. PRAYING SO HARD THAT NO FURTHER TESTING WILL BE NEEDED! LOVE YOU ALL! AMY***************
Here we go again... sounding the horns and sending the SOS for prayers. Last week Mack had an ear infection and we were in the pediatricians office. Over the last several months she has been complaining of side pain that comes and goes and so I've been chalking it up to gas pain. As long as we were with the doctor it was one of those "oh yeah, as long as were here, what do you think about this side pain?", that led to a quick urine check which revealed blood in her urine, then more urine tests and an ultrasound of her kidneys and abdomen. She has too much calcium in her urine so although the ultrasound didn't show kidney stones, they think she many have some tiny stones that she passes when she is experiencing this pain... so we are off to Cinci on the 25th for more tests. Incidentally, and more concerning not to mention completely unrelated to the side pain, they saw a "spot" on Mack's liver. Never something you like to see on anyone's films, especially with Mack's history. So she will need more imaging and possibly a biopsy when we are in Cinci. I'm praying that the spot is gone by the time we get to Cinci! Afterall, we've seen God's powerful hand in action!!! Upon speaking to Mack's doctors, they told us that she is at very high risk for benign tumors to show up at places throughout her body due to the total body radiation she had before her transplant. They think this is probably the case with Mackenzie, but it could possibly be another cancer. Cinci childrens is doing research on imaging tumors to determine if they are benign or not so the kids don't have to endure an invasive biopsy. They have this amazing technology and Mack will be included in their study/research with this imaging. If the imaging is inconclusive or shows that it is not a benign tumor then she will need more imaging and most likely a biopsy. We are hoping and praying to avoid that! So, we are once again, calling on all of our prayer warriors to lift Mackenzie up before our gracious Father, asking for wisdom for the doctors, clear images and definitions, and healing and protection for Mackenzie. Its been a roller coaster of emotions over the past 24 hours as we begin the process of surrendering all over again. Of course, I will update and keep you posted as I have any information. PUSH and PULL for our sweet Mack!!! Love you all!
Amy
Monday, August 16, 2010 8:11 PM CDT
Holy Cow! I cannot believe I have not updated since May!!! I guess that goes to show we have had an amazing summer! We spent most of the summer traveling... we ventured to Arizona to see Sedona and the Grand Canyon, then over to California to stay on Balboa Island. After we got home from the west coast, we went North to the cottage in Wisconsin then over to Minnesota to see family and friends. After all the fun vacationing was over, we headed to Cinci for doctor appts, but made time to do fun stuff too. Mack had a good check up... the oncologist and endocrinologist were thrilled with her progress. Her immunology labs were still a little off and her Igg level remains "lowish" and 550. We were hoping it would be over 600 because they usually give the Igg monthly infusion if the level falls below 600. I can't remember the exact normal value, but I think its over 800. Good news is that it didn't go any lower. It was about the same last year and she did just fine without the monthly immune boost infusion so we are holding off and praying for God's protection! We will return to Cinci in December.
Lindsay had her cardiology and electrophysiology appoints and her heart function looks awesome. She also saw the pulmonologist and her lung function is still at about 50 percent of normal. Good news is that it did not get any worse from last year so the pulmonologist feels pretty confident that it is not a progressive disease, but just a residual effect from her long runs on bypass, long periods of time on the ventilator and the nature of the defect. It is what it is and there really isn't anything they can do about it. She also drops her oxygen level significantly with exercise so she got a VIP parking placard (aka handicap parking). She still managed to water ski, wake board and tube this summer. I guess where there is a will, there is a way.
Everyone else is doing well. I think we had the best summer of our lives and are grateful everyday that we have the gift and blessing of standing on this mountain top! When we arrived in Arizona, the first thing Mack did was run to a pool lounge chair, kick back with her hands behind her head and say "ahhhhh dis is da life!!!" All I could think was everday we spent inpatient was worth it just to see this! Please continue to pray for healing of Lindsay's lungs and Mack's immune system. Praising God for the abundant blessings He has given us... Thank you Lord!
Sending our love,
Amy
Friday, May 14, 2010 1:31 PM CDT
****Sat 5-15-10- Update**** Good news... chest xray looked good! Mack's lungs still sound horrible, but it appears that it is all bronchospasm. Our pediatrician spoke with her doctor in Cinci and it sounds like her lungs probably won't respond like normal lungs to things because of the radiation they have been exposed to. They are prone to be more sluggish to recover. We will see how she sounds today and if things haven't changed we will start her on steroids for 5 days to help her through. She continues to feel great despite it all and for that we are thankful! Hopefully she will make it to her last 4 days of school this week! Thanks for your continued prayers. I'll keep you posted if things change.*********
Well, Mack's been sick all week with a bad cough and runny nose. We've been giving her nebulizer treatments all week, but her lungs are still wheezy and coarse. Took her into the pediatrician yesterday and she has pneumonia and an ear infection. Started antibiotics, still giving her the breathing treatments every couple hours, and it looks like we will probably be starting steriods today. We are going back to the pediatrician this afternoon and if for some reason you are reading this during this time, will you please pray for wisdom for Mack's doctor and healing of her lungs so we don't have to head over to the hospital. I guess I'm fragile or maybe its post traumatic stress syndrome because the thought makes my stomach turn and I feel like I'm on the verge of tears. On the bright side, she looks great and is acting great, eating and drinking and playing, etc. I will update again later tonight after I have more information.
It's been a rough week between Mack's illness, insurance problems, my grandma passed away, Lexie tried out for something at our church and didn't make it so she has been in tears and feeling very down, work has been a little crazy just trying to keep treading water until school's out next week. I guess we could use some encouragement. As always, there are blessings in the mix and this week Lindsay and Taylor turned 15 and got their drivers permit! They are very excited!
Thanks again for always being there and helping us through the good and bad!
Love you all!
Aim
Friday, April 9, 2010 12:47 AM CDT
Decisions, decisions, decisions! Well, where to begin... I was offered a job at a junior high just up the road from our house. The location was perfect, the hours were perfect, the people seem wonderful, the pay was just okay, but the deal breaker was the insurance benefits. As you know, Mack capped out her lifetime max on Steve's policy and so I now carry the insurance benefits for our family and the premiums were just way too high to make the move "doable". I am still unsure of how all this new health care stuff will affect our family or when it will all go into effect, but I have been told that the pre-existing condition clauses will be removed and also the lifetime cap's will be removed. If/when this happens, we should be able to go back on Steve's policy, but in the meantime, I will sit tight where I am at. Lindsay and Taylor are also going to be "sitting tight where they are at". After going through all the application process and paper work and a whole lot of prayer, we have decided to wait and hopefully send the girls to Carmel their junior year. They were both disappointed, Taylor more so than Lindsay, but these are good lessons for them to learn. Afterall, disappointment is a part of life and it's important that they develop those skills to cope with it. On the bright side, they are both beginning drivers ed in a few weeks and are very much looking forward to driving. Hopefully they will be able to log some of their driving hours on our adventures this summer!
We had a great spring break in Branson with unseasonably warm weather. Unfortunately Mack got sick with a high fever, cold and flu symptoms which kept her under the weather most of the week, but she's doing well now. We are heading to Cincinnati the last week of July for all of her follow up visits with oncology, endocrinology and immunology. We have been living a very "normal" life these days and praise God for His mercy and grace every day of our lives!
Counting down the days until summer break now... we will be spending several weeks in AZ and CA in June and gone most of July in WI, MN and OH. Praying that it doesn't go as fast as it looks on the calendar! Trying to "stay in today" and enjoy every moment of it!
Sending you all many hugs and much love!
Amy
Monday, March 1, 2010 6:45 AM CST
Not much new to share... things at the Johnson's have been relatively quiet. Lindsay had some more arrythmia's last month and so she has restarted her Nadolol. We are hoping that this drug alone will be enough to control these fast rhythms but have a plan in place if they continue to present. Lindsay and Taylor both "shadowed" at Carmel High School last week as we are considering sending them to a private school. We haven't been thrilled with the public high school and this is just part of our process of educating ourselves to make the best decisions we can for our girls. This is obviously a huge decision and we have been praying for God to give us wisdom, guidance and direction to set them on the path that He would like them on. We would appreciate your prayers in these decisions because its tough, especially in today's economy but we are willing to make sacrafices if that is where He wants them. In the midst of these decisions, I have been contemplating a new job and these again are tough and scary decisions. Praying that God would make it abundantly clear what is best for our family as we strive to put God and our family first in these big decisions. Again, I would LOVE your prayers for wisdom and guidance.
Mack continues to feel great and is doing well. Nothing on the horizon for her until June/July. We are looking forward to the weather changing as it has been a very LONG winter this year! I was reading back on some old jounal enteries and 3 years ago at this time we were in a very dark place. Praising God for His abundant mercies and His faithfulness in never leaving our side in every moment of every day!
Much love,
Amy
Tuesday, January 26, 2010 10:45 AM CST
No news is usually good news and that has been the case for the most part this past month. We had a great Christmas, very low key... we all agree "less is more". Mackenzie and Lindsay had appointments in Cincinnati after Christmas and we don't have to return for SIX MONTHS! I know shocking, right? We will go back at the end of June. Macks immune system continues to lag behind but is slow and steady. Cardiology thought her heart function looked great and she won't need follow up for 2 years unless something transpires before then. Lindsays has severe obstructive and restrictive lung disease which is either damage from being on the ventilator and bypass so many times complicated by being trached when she was younger and the nature of her defects OR she has a progressive disease that will continue to get worse, but all we can do is wait and see. Her symptoms seem to be progressive but shes never had any of these studies before so there is nothing to compare them too. We did rule out the AVM's that they thought she had which is good news on one hand, but on the other hand leaves us with no treatment options to help with her shortness of breath. They will continue to follow her and if things progessively get worse they will monitor until she would need a transplant. If it doesn't get worse, then she just lives with chronic shortness of breath. Time will tell. In the meantime, she is thriving in high school and truly never complains about any of these symptoms.
Mack gave us a scare last week with a fever and pneumonia symptoms. Fortunately, she was treated aggressively and is doing much, much better now.
We are counting the days for the basketball season to end so Steve will be around more. It is such a long coaching season! And tough for me to be a single parent during that time. The rest of the girls are all doing well and we are grateful for their good health!
Not much on the horizon, we are heading to Branson for spring break and anxious for the weather to get nice again. Thanks again for your continued prayers and thoughts for our family.
Love to you all,
Amy
PS I posted a few new pics in the album
Saturday, December 12, 2009 9:10 AM CST
Wow... I can't believe how long it has been since I posted. All is well here! Our trip to Atlantis was beyond words... absolutely wonderful! To see all the girls healthy and enjoying every minute of our vacation was a gift beyond measure! Weather was gorgeous, accomodations were great, food was amazing and views were breathtaking! We swam with the dolphins, snorkeled, body surfed, shopped, and swam in some of the most beautiful pools! It was so hard to come home and shovel snow, bundle up, get back to reality!
We are all excited about a very low key Christmas this year stripped from all the hustle and bustle. Just focusing on all the things we have been blessed with over the years! Heading back to Cinci on the 28th. Mack has to see the oncologist and cardiologist and Lindsay has an appointment with the AVM clinic for a consult. Lindsay will also have some more testing done for her heart/lungs at the hospital here and see the electrophysiologist before Christmas. Continued prayers for healing of Mack's immune system and Lindsays heart and lungs. It's been great to feel a little more "detached" from the medical world these last couple months.
I hope to post some new pictures soon. My camera is missing which has most all of our pictures from our trip on it. Praying it turns up somewhere.
Wishing you all a wonderful holiday season. May your eyes be opened to all the blessings you already have and detered from the "worldly wants"!
Much love,
Amy
Friday, November 6, 2009 1:37 PM CST
Sorry it has taken me so long to post, I have been waiting for results after our visit to Cinci last week. Where to start.... well, Mack's labs were "neither good nor bad" according to the immunologist. He wanted her to restart the IVIG through the winter and try her off again in the spring. He agreed to take it month by month since I'd rather her stay off if she can. Her Igg level was 574 this month which is the first time it has gone up on its own since being off IVIG for 7 months now. Her CBC looked good and her immune studies were still not normal. The immunologist said he has seen kids take up to 5 years for their immune system to recover and Mack has been consistently slow but steady.
Lindsay had all kinds of lung tests as she is chronically short of breath. Apparently her left main branch bronchi is being compressed as much as 50 percent by her "unique" anatomy so this is making it difficult for her to get air out of her lungs. They also found 3 arteriovenous malformations... one in each lung and one in her liver. These malformations shunt blood from the vein to the artery without it actually getting oxygen. Some of this is probably caused by the high pressures in her lungs. These "AVM's" are rare and the pulmonologist did not have much experience with them. There are 3 centers in the United States that run an AVM clinic and Cinci Childrens is one of them so they were going to refer her case to the AVM team. They also wanted to consult the cardiologist and then get back to us. The pulmonologist also wanted to do a bronchoscopy in the main OR to see exactly how compressed the bronchi is and rule out a ciliary disease by biopsy. In either case... although the info is nice to have, there is nothing that can be done about either so we are opting to wait for now. If need be, we will re-visit this in the summer months, not during cold/flu season. As for the AVM's it didn't sound like there was a lot of treatment options and the one's that are available... no one will be too thrilled to use on Lindsay since she is so complex. Please continue to pray for wisdom for all doctors involved in her case.
Everyone else is doing well. We are counting down the days for our Make a Wish trip to Atlantis... everyone is so excited!
Thanks for your continued love and prayers! More when I know more. :-)
Love,
Aim
Saturday, October 17, 2009 6:02 PM CDT
Just letting you know that we were able to get Lindsay an appointment with a pulmonologist in Cinci at the end of the month when we take Mack to the immunologist. Everyone there has been so wonderful in accomodating us!! We are hopeful that they may have some treatment or intervention that would be beneficial to Lindsay lungs. Please pray for wisdom for the pulmonologist as he reviews Lindsays history and repeats the pulmonary function tests. Praying for complete healing.
Cold and flu season stinks! Nothing major here (fortunately) but everyone is sniffly and coughing. Yuck! We are getting more and more excited every day about going to Atlantis at the end of November. Seems like we have been waiting forever and now its finally real.
We had Mack's annual IEP meeting with the school this week and everyone is very pleased with her progress. She remains in the special ed program, integrated into regular classes with extra support from aides in the room. She will continue to receive PT as needed, OT and speech weekly. She is holding within the realm of "average" which is truly a miracle considering all the radiation and chemo to her brain. Praise God! She always has a positive attitude and constantly has us cracking up! The other day the girls got off the bus screaming "Mom! Mom! Mack kissed a boy on the bus!" Mack had a HUGE smile on her face. I asked, "what's up Mack? Your kissin' boys?" With great pride she replied, "Just on da awrm. Furst it was Ace, den Conner and next Fwankie Jonas!" She's a girl with a plan. hahaha.
Thanks for your continued prayers and support!
Sending our love,
Amy
Saturday, October 3, 2009 8:18 AM CDT
Lindsay and Taylor at Homecoming
Sorry its been so long since my last entry, things have been super busy here. I think I mentioned in my last entry that Mack's immune studies are not normal. She got sick with the flu 101.5 fever and everyone was concerned about how well she would weather the storm, but she did great. Her doctors were encouraged that she was able to handle some of the "real world" germs. She's feeling much better, on the tail end of the cough.
Lindsay saw the pulmonologist a few weeks ago and had pulmonary function testing and allergy testing done. Unfortunately the cause of Lindsays chronic shortness of breath is not due to allergies/asthma or anything correctable according to the pulmonologist at Christ Hospital. He feels its a result of all the scarring from surgeries and chest tubes that she has had over the course of her life. She only has 42 f her lung function capacity. We are trying to get connected to a pulmonologist in Cincinnati for a second opinion. Hoping to see someone at the end of the month when we take Mack to see the immunologist. Lindsay also began having arrhythmias again. She's on an event monitor for the next month to try to gain as much info about her arrhythmias as possible before deciding what to do from here.
Despite all the current "issues" we are greatful for the blessings in each day! I'll keep you posted as I know more. Keep praying!
Much love,
Amy
Friday, September 18, 2009 4:39 PM CDT
Well, I know you have all been waiting to hear about Mack's immune studies.... I finally got word today. This is what her oncologist had to say...
"Mack has essentially normal lymphocyte numbers and subtypes, but lymphocytes have a reduced responses to "stimulation."
Her IgA is below normal, her IgG is Low-ish.
So, not normal. Will she ever have "normal" immunology labs? -I don't know... But Mackenzie seems to be handling the real world of germs O.K.
So: no IVIG at the moment, no "live" immunizations (like varicella, MMR). Other vaccines are O.K.
Jack would like to see her in his clinic."
With that, we are hoping to see Dr. Bleesing (Jack) who is Mackenzie's immunologist in October before we travel out of the country for her Make a Wish in November. It will be good for me to hear what he has to say, especially before we jump on a plane during cold/flu season. She is set to go back to Cinci in December for her oncology, cardiology and endocrinology appointments.
On to Lindsay... Lindsay saw the pulmonologist yesterday as requested by her cardiologist. She has some "abnormalities" in the bases of her lungs and she physical can't take very deep breaths. She is having comprehensive pulmonary function testing done next Thursday and then we will see the pulmonologist again after that to see how to treat her and where we go from here.
Insurance has been a nightmare all the way around. Both girls have many outstanding bills and it is very hard for me to find the energy, not to mention the time to get these matters resolved. We're talking very scary dollar amounts that I fear could land in our lap. I no longer trust the insurance companies at all!!! Please pray for Gods provision and His miraculous way of lifting our burdens to rain down on us with "grace like rain".
Please continue to pray for healing of Mack's immune system. We are trusting God to place a shield of protection around her and keep her healthy. Also prayers for healing of Lindsay's lungs and wisdom for all the doctors. Thanks so much for keeping up with us and continuing to walk this path with us. I will write again next week.
Love you all,
Amy
Wednesday, September 2, 2009 5:37 PM CDT
We had a good trip to Cinci. The IV team drew blood from Mack's foot, but got it in one stick. Yea God! Mack's CBC, renal and liver functions look awesome. I was waiting for the Igg levels to come back today so I could post that info also. Unfortunately Mack's Igg continues to drop. Her level was 411 and the last one was 485. The oncologist is not going to resume the monthly IVIG just based on that number. He will wait for the rest of the immune study results to come back and if needed, consult with the immunologist. If they feel we need to restart IVIG we will begin making monthly trips back to Cinci through the cold and flu season. You just do what ya gotta do. Please pray for wisdom and discernment for the doctors and continued prayers for healing of Mack's immune system. Also prayers for protection from infections and illness especially while she is still compromised.
Lindsay continues to feel stronger and stronger every day. You would never know she had a major heart surgery 6 weeks ago!
I'll update again next week. Results and decisions should be made by the end of the week. Thanks for your prayers and for investing in our lives!
Love you all,
Amy
Sunday, August 30, 2009 9:21 AM CDT
Not much new here... heading back to Cinci tomorrow for Mack's oncology check up and dental stuff. Hoping and praying her Igg levels are high enough to keep her healthy through the cold and flu season! Continued prayers for healthy cells and a good check up! I'll keep you posted.
Lindsay is feeling great! Doctors are amazed by her miraculous heart. Still waiting to make an appointment with the pulmonologist... I guess i've been slacking because it hasn't been pressing and I'm enjoying the break from ALL the doctors!!! :-)
More when I return from Childrens.
Love,
Aim
Friday, August 21, 2009 5:05 PM CDT
Well we are all officially all back into the swing of the school schedule... ugh! Lindsay and Taylor love high school and have made the transition with ease. Mack is thrilled with 1st grade, loves her teacher and continues making new friends. Kali and Lexie are cruising on auto pilot. :-)
Lindsay had her cardiology appointment this week and had a good check up. The fluid around her heart/lungs has completely resolved, her heart function looks awesome and the valve is functioning perfectly. She had a little rhythm disturbance last night, but nothing I felt I needed to call the doctor for. She will see the electrophysiologist in December and the cardiologist in January. Her cardiologist wants her to see a "lung specialist" because of a chronic cough she has had. He wants to have a baseline before cold/flu season hits. I've yet to make that appointment.
Mack goes back to Cinci Sept. 1st for her oncology and dental check up. Please continue to pray the her immune system has fully recovered and her body is producing an adequate amount of IGG. If her levels are low, we will need to go back monthly for the infusions of IVIG. If they are okay, we won't go back until December.
Steve and I are both crazy busy at work with the start of school stuff. We are all very much looking forward to our trip to Atlantis in November!!!!
Love to you all,
Amy
Wednesday, August 5, 2009 4:04 PM CDT
I can't believe summer is coming to an abrupt end! Lindsay is doing well... she plans to start school as scheduled on Aug. 17th with the rest of her classmates. We go back to cardiology on Aug. 20th for her next check up. Praying that all goes well!
Mack has been doing awesome, no issues as of now. She goes back to Cinci on Sept 1st for her oncology check up.
We finally got Mack's Make a Wish scheduled and we will be going to Atlantis for a week in November! Everyone is super excited and really looking forward to the trip. Swimming with the dolphins is one of the things Mack has wanted to do her whole life. :-)
We are looking forward to this upcoming year with excitement and anticipation of more blessings from our amazing Savior!
Much love,
Amy
Wednesday, July 29, 2009 11:51 AM CDT
The days are all a blur... so sorry for not posting yesterday. BUT... we are home! Lindsay came home last night and is feeling better. We weren't sure that she would come home because she had spiked another temp, but unexpectedly we got the "get out of jail" card - hooray! She'll finish a two week course of antibiotics orally and hopefully this will be the last bump in the road to her full recovery! Thanks again for keeping up with us. Your love and support is so important and we are grateful for all your prayers.
More soon.
Love,
Amy
Monday, July 27, 2009 12:33 AM CDT
Well, we've hit a little bump in the road. Lindsay spiked a 101.6 temp yesterday which warranted a trip to the ER down at Christ. She was admitted in the wee hours of the night last night for IV antibiotics and thus we sit. She's just acting "off", but her blood work looks good and so does her chest xray. We are waiting on blood cultures... the 24 hour results will be back tonight and more final results tomorrow night. She's also been battling a headache off and on and nausea off and on. She had what looked like a "cellulitis" on the left side of her chest. Yesterday, she had a egg size red spot that was hot to touch and inflammed, but today looks nearly gone. It's a mystery. We are definitely here until tomorrow night, but hoping she will be discharged on oral antibiotics at that time. I think they feel she could have a small pneumonia that just isn't showing up on her chest xray. Her fever was gone since we arrived yesterday, but now is creeping up. It was 100.0 a few minutes ago. Asking for your prayers for any infection to be cleared and for her to get her energy back and start feeling well. She has been VERY discouraged having to return to the hospital. The IV start was BRUTAL... 3 sticks, lots of digging and HUGE needs for such a small girl (20 gauge)! She was supposed to be at camp this week with her sisters and her best friend, instead... they are all at camp and she sits here in the hospital. I think this is definitely affecting the discouraging attitude. It's a bummer, but in the grand scheme of life, missing camp to get healthy is worth it. I keep telling her this is just a little bump in the road. Please pray for her spirits to pick up, and that she would be discharged home tomorrow. My mom and I stayed at the hospital last night and we didn't get settled into our room in 4am. It was a very long ER visit! Needless to say, we are running on very little sleep. Steve is working basketball camps this week and I am supposed to return to work Tomorrow, Wed and Thurs. Things are a little more complicated with our schedules, but God has faithfully worked out all the details in the past and I trust He will continue to do so. I'll keep you posted as things change or progress around here. Thanks for pressing onward with us!
Much love,
Amy
Saturday, July 25, 2009 10:07 AM CDT
Just a quick note to let you know all is well. Lindsay went to the cardiologist on Thursday and her heart function looked good on echo. The fluid around her heart has resolved and there is just a small amount of fluid by her lung. They were very pleased with everything thus far. We sent in her 24 hour holter yesterday and should have the results later next week. The chest tube "holes" are slowly closing, but they are taking much longer than I remembered. Maybe because they are so much bigger than they were when she was little?!?!? If all continues to progress as planned, she will go back at the end of August, then every 3-6 months for the first year post op. The cardiologist told us that this is like starting from "scatch"... a "new beginning"...a "fresh start" and they aren't really sure what to expect as far as her heart rhythm. This is the first time in her life that she has been off anti-arrthymia medications. If need be, they are prepared to put the pace maker in and it would be a simple surgery that would involve a small incision below her rib cage since they already placed the wires. That was a great saftey net! She remains on the lasix and iron supplement, but both plan to be stopped at the end of August and then she'll be on NO MEDS! Wow, no meds for Lindsay and Mackenzie... it seems unreal!
Not much else for now. Thanks again for your continued prayers and support... we are still in awe of God's amazing grace!
Much love,
Amy
Tuesday, July 21, 2009 8:51 AM CDT
So far things seem to be progressing well. Each day we see some improvement in Lindsays strength, activity, appetite, etc. She is up and about and getting around well. Her biggest complaint is back pain which I guess is a common complaint after this surgery from laying in bed and also from the back muscles trying to compensate for the lack of use of the chest/abdominal muscles because she guards them due to the incision.
We are so proud of her attitude and determination to plug through. And we continue to praise God and thank Him continuously for all He has done!!! Lindsay goes back to the cardiologist a week from Thursday. Please continue to pray for protection and healing for Linds.
Much love,
Amy
Friday, July 17, 2009 7:41 PM CDT
8pm UPDATE FROM HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I couldn't contain myself today from singing praises to God as I stood in awestruck wonder of His mercy and power. I was singing The Revelation song by Philips Craig and Dean. They lyrics seems so fitting to praise our King on this awesome day!!!
Worthy is the,
Lamb who was slain
Holy, Holy, is He
Sing a new song, to Him who sits on
Heaven's Mercy Seat
Holy, Holy, Holy
Is the Lord God Almighty
Who was, and is, and is to come
With all creation I sing:
Praise to the King of Kings!
You are my everything,
And I will adore You…!
Yeah!
Clothed in rainbows, of living color
Flashes of lightning, rolls of thunder
Blessing and honor, strength and
Glory and power be
To You the Only Wise King,
Yeah
Filled with wonder,
Awestruck wonder
At the mention of Your Name
Jesus, Your Name is Power
Breath, and Living Water
Such a marvelous mystery
Yeah...
Holy, Holy, Holy
Is the Lord God Almighty
Who was, and is, and is to come,
With all creation I sing:
Praise to the King of Kings!
You are my everything,
And – I - will - adore YOU…
Come up lift up His Name
To the King of Kings…
We will adore YOU Lord…
King of heaven and earth
King Jesus, King Jesus
Aleluya, aleluya, aleluya!
Majesty, awestruck Honor
And Power and Strength and Dominion
To You Lord,
To the King, to King
To the King of Glory
Then we were reading in 2 Corinthians 1:3-11 and I felt like Paul was speaking directly to us. He writes:
"All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort. He comforts us in our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us. For the more we suffer for Christ, the more God will shower us with his comfort through Christ. Even when we are weighed down with troubles, it is for your comfort and salvation. For when we ourselves are comforted, we will certainly comfort you. Then you can patiently endure the same things we suffer. We are confident that as you share in our sufferings, you will also share in the comfort God gives us.
We think you ought to know, dear brothers and sisters, about the trouble we went through. We were crushed and overwhelmed beyond our ability to endure, and we thought we would never live through it. In fact, we expected to die. But as a result, we stopped relying on ourselves and learned to rely only on God, who raises the dead. And he did rescue us from mortal danger, and he will rescue us again. We have placed our confidence in him, and he will continue to rescue us. And you are helping us by praying for us. Then many people will give thanks because God has graciously answered so many prayers for our safety."
What more can I say? So many answered prayers, so many rescues in our lives and HE WILL CONTINUE TO RESCUE US!!! AND YOU have helped us endure such suffering by praying for us every step of the way. What an amazing army we are together! Now today it is time to bask in His awesome presence and give Him praise and thanksgiving for who He was and is and is to come!!!!! Halelujah to the King of Kings!!!!
Lindsay is soooooo happy to be home. She had McDonalds on her way home from the hospital and savored every bite. She is enjoying the comfort of her own bed and looking forward to a restful night with no interuptions! She was discharged on vicodin, lasix and an iron supplement. She will go back in two weeks for a follow up appointment and I expect they will discontinue those medications at that time. It is all just so miraculous!
Fallen to my knees, humbled by His provisions with raised hands in worship of our Great God this evening.
Please join me in praise.
More tomorrow.
Love,
Amy
Friday, July 17, 2009 8:36 AM CDT
Lindsay had a good night and slept well. CHEST TUBES CAME OUT AROUND 7AM THIS MORNING!!!!! They gave Lindsay versed and she slept through the entire thing... no pain at all. When she woke up she started crying because she was so happy the tubes are out. We are seriously in awe at the work of God's hand and the way He has tenderly and mercifully cared for our family. Miraculously, they are thinking about sending Lindsay home this afternoon. It all seems so surreal. With the type of surgery Lindsay had, I never thought it would be possible that she could be home 4 days post op!!! But with God, all things ARE possible!!!! Praising God for His faithfulness and His constant care of our fragility. They want to see Lindsay eating more and moving more. She is pretty dizzy when she is up moving so please pray that the dizziness subsides. If she can eat and walk without problems, it sounds like she will be discharged tonight. I still can't believe it! Please take some time to praise God and thank Him for the many answered prayers and His unconditional love for us all! More later when I know the plan.
Much love,
Amy
Thursday, July 16, 2009 9:15 AM CDT
*****10:00 pm update from the Ronald Mcdonald House************* Overall today was a good day. Despite the disappointment of not getting her chest tube out, Lindsay was up for a few walks down the hall, sat up in the chair and was actually awake the whole day. She really wanted them to give her Dilaudid so she could just sleep until the tubes come out, but we opted for some oral pain killers instead. She is sleeping soundly now. Please continue to pray for the drainage to stop and her body to heal. Her oxygen levels were on the low end of "acceptable" for most of the day off of the oxygen and when she sleeps they dip down. The doctors feel she'll be able to maintain acceptable levels when the chest tubes are out. Keep praying! More in the morning.
Love, Amy****************
*****12:00 pm update from Lindsays room****** Change of plans. Lindsay is VERY disappointed and feeling a little discouraged because her chest tube started draining again when she got up to walk. They will not
be removing it today. We are hopeful they will be able to get it out tomorrow morning. Please pray for the drainage to cease! Praising God for a mild appetite. She was able to eat some cantelope and watermelon this morning and actually enjoyed it. She has not thrown up since yesterday morning and the nausea comes and goes not instead of being constant. Gotta run and help her up. More later. Amy*********************
Writing from the Ronald McDonald House (another answered prayer!!!) We checked in last night and the house has already been a blessing to us! Lindsay moved from the Peds Surgical Heart Unit to the floor last night and the girls were able to cover her walls with decorations. She continues to battle the nausea and hasn't been able to eat much. Yesterday we washed her hair and gave her a bath and she said, "I feel amazing. I'd feel perfect if the chest tube was out." Her chest tube drainage has nearly stopped and they plan on taking the tubes out around 11am. She has two of them. Please pray for peace and protection from pain. It is my understanding that this is BRUTALLY painful to have removed. She has been getting out of bed and walking (at least to and from her bathroom) and we are hoping when the tubes are out she'll be more willing to walk farther. The central line and the arterial line came out yesterday and she was thrilled with that. They tried to take her off the oxygen last night but her oxygen saturation fell and so they restarted it. Shes only on minimal support, I think she's at 1/2L 100 I am going to be heading to the hospital in a little bit, but Steve spent the night with Lindsay and said she had a good night, slept the whole night except when the nurses came in. Please continue to pray for the nausea to subside and for her body to tolerate much needed food and drink. I'll try and write again later in the day and post the pictures. Sometimes time slips away and then I'm too tired, but if there was anything going on I'd be sounding the horn for prayer requests, so no news is good news. Thanks again for all you do for us! Love you all, Amy
Wednesday, July 15, 2009 10:32 AM CDT
Lindsay had a restless, uncomfortable night, but things seem to be moving in the right direction. They will be taking out her central line today and her radial art line. We were hoping maybe to get her chest tubes out too, but that looks like tomorrow. She is dealing with a lot of pressure in her chest from the tubes. They tell us this is a common complaint. The nausea and vomitting hasn't let up and we continue to adjust meds and try new things to find the right combo. Please pray specifically that she would feel better and will be able to tolerate eating and drinking. She said that has been the worst part of the whole surgery is feeling nauseous all the time. It looks like she will be moving out of PSHU and down to the floor this afternoon. She has been experiencing some mild arrythmias, but has not been symptomatic with them so no one seems concerned at this point and they will just continue to monitor them. She seems more anxious today, feeling like she can't handle the pressure in her chest and the nausea any longer. Please pray for God to bless her with a peaceful day today. We are still waiting to get into the Ronald McDonald House and are hopeful a room may open up later today. Praising God for the wonderful nurses and doctors who have given Lindsay competent and tender care. (They system here drives me crazy, but the care she has received has been excellent - Praise God!) I'll will write again later this evening when we are in her room and post some new pictures. I know I may sound like a broken record, but I can't thank you enough for praying us through! Everytime I say "thanks", its never out of habit, but because my heart overflows with gratitude! God has been so merciful and I marvel at how tenderly He has cared for us these last several days. I would say this is a direct answer to prayer, amongst many others! Keep praying!
Sending our love,
Amy
Tuesday, July 14, 2009 11:19 AM CDT
****4:45 pm Update***** Pretty quiet and uneventful day, we couldn't ask for anything more. Lindsay was up in her chair twice today. She seems more uncomfortable, but she needs to get moving. She is extremely tired and wants to sleep. She has drank a can of sprite and ate some jello today, but started feeling nauseous again. No puke as of yet, so please continue to pray the nausea and vomiting would subside. Here are some pictures from yesterday and today. Yea God! My camera was found!
I can't believe it is almost noon already. Lindsay had a relatively good night. Steve and I ended up going to a hotel down the street to sleep which was really good for us to get some rest. Lindsay has had trouble tolerating anything by mouth and continues to throw up. The weaned her off her fentanyl drip (for pain) and started her on toradol every six hours for pain and she can have morphine as needed. So far pain has not been a complaint of hers. She is dying of thirst and starving, begging for a 2 liter of coke to down. The nurse told her if she didn't throw up she could try some jello. A few minutes later she threw up and the nurse told her she would have to wait awhile to try again. She said, "well, I didn't really throw up, I just burped and it kept coming." Clearly, she is desperate. :-) She has blessed us with her positive, cheerful (for the most part) attitude which has really helped us cope. They weaned the oxygen in her nasal cannula in the night from 3L 100o 2L 100 When I told her they were going to turn down the "flow so it wasn't blowing in her nose so hard", she said, "I don't want them to turn it down. I like it like this, it cools me off. I'll get too hot if the turn it down." We were cracking up... like she has her build in air conditioner or something. They got her up and sitting in a chair this morning and she seems to be more comfortable upright. The put the stockings on her legs to help prevent blood clots. They plan on taking out her foley catheter later today so she will have to get up to go to the bathroom. They want her to move around today. Her chest tubes continue to dump blood/fluid but it is slowing down. Her heart was 130's-150's, but now is more in the 110-120 range. They are weaning her dobutamine drip today which is a blood pressure support medication and hope to have her off of that by the end of the day. As soon as she is tolerating fluids better they will take out the central line in her chest and the radial art line in her left wrist. Please pray for recovery of Lindsay's digestive tract today. That God would help things to move through appropriately and that she would be able to eat and drink. Praising God today for a quiet night and asking for more mercy and grace today. Lindsay had an echocardiogram late last night because they thought there was some fluid builing up around her heart, but they felt the echo looks good. Her central venous pressure has been creeping up, but they think it is just the position of the catheter. Her peripheral blood pressures have been stable. Continued prayers for comfort and peace. Praying that God would take away any discomfort or pain she has and give her the strength to get up and get moving. Once she is tolerating fluids, she may be able to move to the floor, so we are hoping that might happen tomorrow. That would be wonderful because there is a parent bed in the room and then we could stay with her. We checked in at the Ronald McDonald house again today and there is still no room, but they think possibly tomorrow someone will be checking out and we could get in. Please pray for a room to open up for us as soon as possible. If things are stable and Lindsay feels comfortable with us leaving again, we will most likely stay at the hotel tonight. I think thats about all for now. I'm sorry it took so long to get this update to you. I was hoping to post some pictures for, but as of now I have lost my camera. Please pray that we would find it. I will write again this afternoon. Thanks a million for all your prayers, we definitely are experiencing the power of those prayers moment to moment! Love you all, Amy
Sunday, July 12, 2009 10:24 PM CDT
*****7:00pm update from the peds surgical heart unit*************** Praising God that Lindsay is in her room and the surgery is over. Things went well, but it sure is hard to see her like that. Amazingly, she is off the ventilator which I am shocked about, but she hardly looks like our Lindsay. She is so emaciated and "dry" and her skin color is very yellow. Her eyes are sunken. She has 2 chest tubes, a triple lumen central line in her chest, 2 peripheral IV's and her foley catheter. The doctors seem pleased so far. Please pray for the bleeding to subside and her chest tube drainage to slow, also prayers for her urine output to be good and for her kidneys to recover. She is currently receiving plasma, platelets and red blood cells and cryo. Also asking prayers for a quiet, restful, uneventful night. Thanking God for so many answered prayers and pleading with Him for more mercy and grace. It feels like we have such a long way to go. I'm exhausted. I had about 1 1/2 hours of sleep last night. There are currently no rooms in the Ronald McDonald House so Steve and I will be in a waiting room chair... ugh! Also asking prayers that a room would open for us tomorrow. I will update again around 10pm. Sorry I was late on this update, but they called us back to a different waiting room and we sat and waited and waited and waited before we could see her. As always, no news from us is always good news. More later. Lots of love, Aim*********
*****3pm update from the OR*********** My heart is racing with praise to our awesome God. Things continue to go well. They finished the "maze procedure" and replaced the homograph, they did some pulmonary artery reconstruction and they are now placing the lead wires for the pacemaker even though they are not putting in a pacemaker. Specific prayers for minimal bleeding as they finish the surgery. If bleeding is not a big issue they may extubate her tonight (take the breathing tube out). That is our hearts cry! We are in awe of God's provision. Continuing to bring our praise, thanksgiving and requests to our Father in Heaven. Our next update from the OR will be between 4:00-4:30. I'll write again then. much love.****
***1:30pm update from the OR************* So far things are going according to plan. Lindsays heart is now stopped and she is on bypass. They are working on the electrical part of her heart doing the "maze procedure". Once they finish that they will replace the homograph and do some reconstruction on her pulmonary artery. They are hoping she will be off bypass within 2 hours. Our next update from the OR will be between 2:30 and 3:00 and I'll keep you posted. Please continue to plead for protection as they replace the homograph and keep the bleeding under control. Also specific prayers that she would have no problems coming off the bypass machine. Staying on our knees....********
*****11:45 pm update from the OR*********** Praise God! Miraculously what they thought would have taken 4 hours (to open her chest) was done in just under an hour. Her sternum is open and the homograph did not rupture!!!!!! She said they had blood and bypass ready, but she did not need it at that point. She had minimal bleeding and they are just finishing clearing the rest of the scar tissue. They also determined that she will not need a pacemaker so they will place the leads to make it easier in the future if there is a need. We stand in awe of God's care and ask that He would continue to orchestrate all that occurs in the operating room. Keep on your knees, there is still a long way to go!*****
*****10:30 am update**** Lindsay just went back to the OR. They said it would be at least an hour before they begin the surgery because they have to start her lines and get her on the ventilator, etc. they should update us every 1 1/2 hours and I will let you know when I hear. On my kness, Amy****
***8:30 am update***** Well, we are already being challenged to exercise our patience. Apparently one of the surgeons got called to an emergency at another hospital and so there is no surgeon to start Lindsay's case. We have been sitting in the pre-op room since 5am and she probably won't get started until 11am. We are purposefully choosing to focus on the positive and in ANY given situation you can find something positive. In our case, if Dr. Ilbawi finishes the case he is currently doing or gets to a point where the other surgeon he is with can take over then he will begin Lindsay's case by himself which means that he would be the one to open her chest. This was one of our biggest concerns and an area that we have been praying diligently about. Keeping it in an open hand before our great God. Also, Lindsay has been sleeping almost the whole time we have been here. She does not even know the surgery is post-poned yet. We are grateful for the peaceful rest she is experiences in this time of frustration. Keep praying and I will keep you updated as often as I know anything. Love you all!******
"Dear Heavenly Father, we bring Lindsay before you tonight and ask for your healing hand to lay upon her. Father, we lay her down at the foot of the cross and walk away knowing that Your care is perfect and flawless. Lord, it is ONLY Your hands that we feel peace in letting go. We are so grateful for Your perfect plan for Lindsay's life. Almighty God we praise you for all you have done for our family and for your faithfulness in providing for our every need. You know the state of our being and the condition we are in God, you know we are fragile and we are weak. We are broken. Be merciful. Father, craddle us in Your powerful arms and tenderly care for us. Let your grace fall like rain and wash over us all. Hear the cries of our heart, pleas of safety and healing for Lindsay. Father you know the painful yearning and desire that burns within our hearts, desires for an uncomplicated and successful surgery. Desires for Lindsay to live a long life here on earth to bring glory and honor to your name. It is an honor to suffer in your name. Lord you have brought so much meaning and purpose to our suffering and we praise you for that. Lord I pray that all who cross our path will have an encounter with you... that Your presence would be so undeniable present during our stay at the hospital. We know you are the great physcian and our hope lies in YOU Lord! We recognize you as the giver of life and we ask that you would breathe life into Lindsay's body. Lord we ask you to heal her broken heart. How easy that is for you to do when man struggles to understand its complexity and wavers on how to begin to repair it. You know exactly what she needs Father. Show the doctors, speak to them and give them your wisdom regarding Lindsays heart. Help them to understand what a masterpiece you have made. Help them to make wise decisions. Give them the skills they need. Guide their hands, especially as they open her chest Lord. We understand that this will be a very risky and tedious task, but for you nothing is impossible. Lord, control the bleeding, remove the scar tissue before they even get in there and free the homograph so it is not adhered to her breast bone when they enter. God in Heaven, we ask again that you would send angels to stand guard all around Lindsay's room and protect her. Help us to be patient as we wait on You. Abba Father, thank you for the peace you have given us. Thank you for never leaving us, for loving us uncondionally and for providing faithfully for our every need. Lord we ask boldly that you would continue to bless us indeed. Thank you for enabling us to experience joy and happiness in the midst of so many uncertainties. Thank you for being the rock, the constant that give us stability. Jesus, we ask that you would carry us through the next week and bring Lindsay home safely as soon as possible. Thank you for our family and friends who have willingly walked by our side picking up pieces of our burden and carrying us when we were too weak to go on. Bless them through their desires to be obedient to your promptings and for their willingness to help our family throughout the valley's we have walked. Father you tell us that through all things you work together for the good and I ask that you would reveal more of yourself to all of us so that we can become more like you. And so we lay our heads to rest tonight, axiously awaiting and intentionally seeking your mercies in the morning. We trust in your constant care. Father protect Lindsay's heart and lungs, hold her brain, liver, kidneys and bowels. Protect each organ against any damage that could be caused from the surgery. Hold them all and allow them to rest while you maintain their perfect function. Control the rhythm of her heart and let it beat according to your command. Protect her from all infections and other complications. We surrender Lord, we lay it all down. We choose Your Will above our own and we trust You. In Jesus Name I pray, Amen."
By the time most of you read this we will be at the hospital. Surgery is still scheduled to begin by 7am. We should get updates from the operating room about every 1 1/2 hours and I will update here as I get information. It will be a long day, no doubt. But we have peace that truly is beyond human comprehension and we are holding tight to His promises. Linday is doing great. She said, "Why should I be nervous... I'm gonna be asleep the whole time!!!" We have made big plans to decorate her room while she is still sedated so she is excited to wake up and see what we've done to it. We also told her we are going to paint her toe nails, but she won't know what they will look like until she wakes up... AND we are going to put a tatoo on her somewhere that she will have to find when she is awake. We also built her a "candy mansion" at her request and she can't wait to dig in.
Please continue to cover us in prayer and all the specifics for Lindsay. We'd love for you to join us at Christ Hospital (Oak Lawn) on the 3rd floor in the surgical waiting room for a time of prayer at any point throughout the day if you feel led to come. Thank you so much for your relentless support! We love you all!
Praising Him,
Amy
Saturday, July 11, 2009 9:15 AM CDT
Everything is beginning to sink in as we approach Monday. It almost seems surreal that we are heading back to the hospital AGAIN! Lindsay's will be the 1st surgical case of the day so we will be leaving home around 4am as they want her there at 5:30am on Monday. I expect she'll go back to the OR around 7:00. They have prepared us for a very lengthy surgery, mostly because they have entered her chest so many times and the scar tissue bleeds alot. They said it could take 4 hours just to open her up. They gave us an estimation of 10 hours for surgery. One of the doctors biggest concern is that they feel pretty confident that the homograph has adhered to her breast bone and it will rupture when they open her. We are asking very specific prayers for God to protect the homograph and allow her chest to open with minimal bleeding, through minimal scar tissue and that it would not rupture. That it would be a very controlled situation and routine procedure. If the homograph were to rupture, doctors are prepared to put her on rapid bypass through access in her groin, but clearly this is not the ideal route to take. Please pray for God to give the doctors skills and wisdom, that He would guide their hands and that He would eliminate any scar tissue and control bleeding.
We will be in the surgical waiting room at Christ Hospital in Oak Lawn all day on Monday. If you would like to join us in prayer, stop in.
Thanks a million for keeping up with us. Your prayers are the most important gift you could ever give us. Please storm the gates of heaven with us and plead for mercy and grace to pour down on Lindsay.
More soon.
Love,
Amy
Thursday, July 9, 2009 8:26 AM CDT
We had to drag the kids home from the Northwoods as we all had a wonderful, relaxing vacation. I finally got a voicemail from Lindsays cardiologist last night basically saying that Dr. Ilbawi was prepared and in agreeance of Lindsays surgery on Monday. I don't really know anymore details than that. I won't know a time of her surgery until Sunday night. They are still unsure whether or not they will place a pacemaker device, but if they don't they will place the leads in the event that she would need one in the future. This would make the procedure much easier because they would not have to open her chest again since the "wires" would already be there. The message also said that "Dr. Ilbawi really enjoyed reviewing Lindsay's angiogram. He said, 'she's a masterpiece'". We are heading down to the hospital today for pre-op labs/exam. Please continue to pray that God would guide the doctors and prepare them with His wisdom and skill. I'll update as I have any information. If anyone would like to join us at the hospital on Monday in the surgical waiting room, we plan to pray throughout her surgery.
Mack is doing great. Her Igg level dropped a little from 518 to 495. We are hoping and praying that it is stabilizing out and will begin rising. Her CBC looked great. We are scheduled to return to Cinci the beginning of September. Please continue to pray for her immune system to fully recover and specifically that her body would produce healthy Igg.
Everyone else is hanging in there. We just feel the weight of the surgery looming and will be glad to have it behind us. All in all, we are doing well. We will be staying at the Ronald McDonald House with Kali and Taylor. Steve's parents are coming down this weekend and they will be staying at our house with Mack and Lex. I will update the webpage several times a day as things tend to change quickly.
Thanks again for covering us in prayer. We are grateful for each of you!
Much love,
Amy
Monday, June 29, 2009 4:26 PM CDT
We continue to ride the roller coaster... the ups, the downs and all the loops! I spoke with Lindsays cardiologist a few times today and finally one of the nurses from Dr. Ilbawi's office (Lindsays surgeon). After much confusion which I won't go into the details because it makes me so frustrated, LINDSAY WILL STILL BE HAVING SURGERY ON JULY 13TH. With that said, no one has actually talked with Dr. Ilbawi who gets the final word on whether or not she'll go to the OR, and he is out of the country. They may not be able to discuss her case with him until July 8th, so there is still a small chance the surgery would be cancelled if he felt she didn't need it. I don't think anyone is anticipating that, but you just never know. No decisions have been made about the pacemaker issue and this is something that will require a lot of thought and contemplation so please pray specifically for God to clear the doctors minds and share His wisdom in this area. It sounds like she will recieve a synthetic conduit, most likely gortex, with a bovine valve. We always knew Lindsays LOVE for cows was deeply seeded in her heart~! Trusting God to work out all the details and remind the doctors of anything they may be overlooking and forgetting. It feels a little "rushed" and chaotic, needless to say... disorganized... and that makes me feel a little uneasy. Praying for God's protection from man's errors and for angels to stand guard all around our sweet Linney Lou. I'll keep you posted as I receive news.
Much love,
Amy
Sunday, June 21, 2009 8:08 AM CDT
****Monday 6-29-09 Update****** STILL NO NEWS ON LINDSAY'S SURGERY. Still no return phone calls from doctors. I can only assume at this point that the surgery will not be on July 13th because she is mysteriously not on the schedule for that day and it would be too soon for them to get everything together and reviewed for her surgery. I believe her doctors return to town sometime this week so hopefully I will hear something. Please continue to pray for the details. Much love, Amy*************
****Tuesday 6-23-09 UPDATE****** Well it took my refusal to hang up the phone until I spoke with someone who could give me answers only to find out that NO ONE has any answers. I believe Lindsay's case has fallen through the cracks. She is not on the surgery schedule for July 13th. It does not appear that they ever discussed her case at the cath conference. No one has ever called me back as they told me they would. Most of her doctors are out of the country at a big conference which makes getting answers that much harder. I don't really know what to make of it all other than.... I want to run back to Cincinnati! I have no idea what will happen, IF she will have surgery, WHEN she will have surgery, etc. She had all the orthodontics taken out of her mouth yesterday in preparation for surgery, I was about to cancel her week of camp the last week in July to get a refund, but now I don't know whether or not to do that. We are leaving today to go up to the cottage. Originally we were going to go from Wisconsin over to Minnesota, but cut that trip short due to surgery... now I don't know where our travels will take us or how long we'll be gone. Steve's family is waiting to hear if they need to make plans to travel down here for the surgery and to help with the other girls. Doctors just don't have a clue what their decisions OR lack of decisions do to families. I'm angry! I spoke with Dr. Zimmerman last night who is the doctor who did Lindsays ablations a few weeks ago. He told me that he would try to sort things out and get a hold of me on my cell phone "sometime this week". I'd be willing to bet all the money in the bank that I will have to track him down at the end of the week. I've lost trust and that is something that is very difficult to ever get back. But the good news is that we have a God who knows everything. Who is not razzled by any of this, who is not confused or stressed out, who is ALWAYS in control when all of life feels out of control and He is always available to us. So we continue to call on Him to intervene, reveal His plan and trust in His perfect care. This is always where our peace and assurance comes from and I can't imagine going through this without having a relationship with Him. He IS my rock and my strength. So we are taking off this afternoon. I'm not sure when we are coming back or where we will be going, but we'll take it one day at a time and trust that God will work out all the details. He has never failed us and I am so confident in HIs constant care. His faithfulness IS my security! I'm not sure how much computer access I will have up north, but I will try to post when I know something. Thanks for your patience and continued love and support!
Praising Him,
Amy
*************************************
All is well. We are STILL waiting to hear a final decision and final plans from Lindsay's doctors. It is so frusting to be left hanging in limbo. The decision to send Lindsay to the OR does not just affect our family, but has a ripple effect to many others and it has been hard on us all to be patient. I don't think doctors realize the impact this has on families. After receiving such structured, organized, and outstanding care in Cincinnati, it is very hard for me to deal with the disorganization and lack of communication at Lindsay's hospital. I was flooded with so many negative feelings and emotions when she was inpatient last week. I have a lot of baggage attached to the anxiety that is provoked from lack of structure and lack of communication. This was the burden that was lifted from me in Cincinnati and this is the burden that I feel becoming more and more heavy as I am forced to carry it. I hate to say it, but we feel like a "number" again. I know Lindsay's is in good hands with her surgeon, but it is everything else that surrounds that, that is unsettling and in infuriates me!
So, I'm trying to keep my eyes fixed above and focus on today. We have been blessed richly and I'm clinging to God's faithfulness to meet not only Lindsay's needs, but mine too. I am fragile and He knows that!
Please continue to pray for Lindsay's doctors. I will post as soon as I hear from them... or when they FINALLY return my phone calls. :-)
Much love,
Amy
Thursday, June 11, 2009 8:34 AM CDT
*****12:30 pm update**** EKG and Echo looked good. Just got word that we are heading home. Praising God for lots of answered prayer! Should be leaving in the next half hour. They are going to try Lindsay off all of her medications. Please pray for stability of heart rhythms and continued guidance for her doctors over the next week as listed below. I'll update again next week when I hear the plan from her doctors unless something happens before then. Much love, Amy**************
We had a pretty quiet night. Lindsay is doing well and we are waiting for her echo and ekg. The doctors have not rounded yet, but I've heard that they did not have all of the information in time to present Lindsay's case last night so no decisions will be made until next week. At first I was disappointed, but then I quickly realized that this gives us the opportunity to pray for those decisions for an entire week. Praying that God would whisper to Lindsays surgeon (Dr. Ilbawi) and cardiologisit (Dr. Javois) throughout the week and make His plans clearly known to her doctors. Praying that He would continue to give them specific ideas and wisdom and knowledge and discernment regarding Lindsays unique heart. Praying that He would continually press Lindsay's case upon the doctors hearts so that when they wake and when they go to sleep they are thinking through what is best for her. Praying that her doctors would not be so distracted by the daily in's and out's of life that they would be in tune to hearing God's voice. They will meet next Wednesday and we should hear the plan on Thursday.
Anxiously waiting for the echo and ekg... and our discharge papers! I'll update again after her tests this morning.
Sending our love,
Amy and Lindsay
Wednesday, June 10, 2009 1:14 PM CDT
*****8:24 pm update****** We are so grateful for the good news we have received all the way around today. I probably sound like a broken record by now, but I can't say it enough... God's grace is sufficient! It seems the doctors were expecting their findings to be much worse and were pleasantly surprised. Lindsays team of doctors are meeting tonight to discuss all the info they obtained today and I'm asking that you pray specifically for wisdom and guidance for the doctors. They will be making some very important decisions like whether or not to move forward with her surgery scheduled for July 13th. Things looked better than they anticipated so it is not clear that she should have surgery now. Also, they will be making decisions regarding weaning Lindsay off her medications now that they have done some more ablations. AND they will be discussing whether or not she should have a pacemaker placed. Clearly, these are all VERY important decisions and we ask that you join us in praying that God would reveal His infinite wisdom regarding Lindsay's heart that He created unique to her. He knows her heart better than anyone and He knows exactly what she needs. Lindsay will need to lay flat on her back until midnight. She will have an echo and ekg in the morning and the doctors will hopefully have a plan for the near future. Praying for a quiet night tonight. I will update again in the morning unless there are issues before then. Remember, no news is always good news from us. Love you all and am so thankful for your continued support.**************
*****5:25 pm update****** Praising God, they were able to ablate the 240 heart rate pathway and decided to call it a day. They are just starting to pull out the wires and catheters and hopefully extubate her shortly. She will go to recovery for the next 4-6 hours and then will move to the floor. Sounds like they were able to stimulate just about every type of arrthymia known to mankind. We are waiting to speak with Dr. Zimmerman to see what all he found and what this means for the future. I'll update again after we speak with him in an hour or so. Please pray for Lindsay not to get sick from the anesthesia and for her to wake up feeling well. Also asking prayers for an uneventful night and healing of Lindsay's heart. More soon. Amy***************
*****4:40 pm update******Well, just got word that they were able to ablate the one pathway which took Lindsay's heart rate to 160's. I think this is the pesty arrthymia that she would break through her meds with. They found another atrial flutter that took her heart rate to 250. They are working on that pathway now hoping to ablate it. It sounds like they want to continue to look for more after they take care of this one, but it all depends on how much her heart will tolerate. So far, she has done remarkably well and they tell me she has been stable the entire time. Please continue to pray. I will post after our next update around 5:30pm or a little after.***************
*****3:45 pm update******* The doctors have induced an arrthymia and are currently trying to "map it out" and find where it originates. It appears to be her normal arrthymia that she tolerates, but with wires probing around in there and an already irritated and tired heart from the cath we are praying for protection and guidance of the doctors hands and minds. I just spoke with the nurse in the cath lab and Lindsay is stable in her arrthymia. Dr. Patel came out and told us that structurally, Lindsay's heart looks great and performance wise, it is doing awesome. The homograph actually looks pretty wide open, but the valve in the conduit is leaky. I asked if that means there is a possiblity that she would not need surgery yet and he said, "you never can predict what Dr. Ilbawi will want". They are hoping to present her at cath conference tonight, but the procedure they are doing now will be at least another 2 to 3 hours. They may not have all the info to present her on time in which case they will present her next week. We are supposed to get another update at 4:30. I'll let you know when we hear news. *****************8
******2:20pm update**** We just got a call from the cath lab. The doctor finished the cardiac cath and the EP team has taken over the case. As soon as Dr. Patel dictates, he will come out to talk with us while Dr. Zimmerman continues with the EP study. Lindsay has been tolerating the procedure well and sleeping soundly. We will hear from the team in another hour and a half. I'll update then. Keep praying! Much love, Aim**************************
Lindsay went back to the cath lab at about 11:30 this morning. She did great, fearless! We just got our first call at 1:15 and things were going as planned. They were in the middle of obtaining pressures and getting pictures. Sounds like the cath portion would be another hour and then the doctors will change and the EP study will begin. The EP portion is expected to take 4-8 hours. So far things have gone smoothly and we continue to pray for angels to stand guard in Lindsays room and for God to guide the wires and catheters into the precise places needed. Praying that the areas creating rhythm problems will be easily identified and easily rectified. Please pray specifically that Lindsay heart will tolerate all the irritation and manipulation that they must do to obtain these studies and get the information they need for her surgery. Also specific prayers that things move swiftly and she is done earlier than later so she can go to the floor instead of PICU. I will update again in about an hour and a half when I hear the next update. Thanks so much for praying us through! Your prayers are worth more than you will ever realize and mean more to us than words can express. More soon. Love, Amy
PS Syd, I changed the background just for you! :-) Hope it's easier on your eyes.
Tuesday, June 9, 2009 8:40 PM CDT
We are getting packed up and ready to head to the hospital in the morning. It's about an 1 1/2 hours in good traffic so we plan on leaving a little after 7am. Lindsay's heart has been stable, no more arrhythmia's, praise God! I will try to post when she goes back for her procedures. We will get updates every hour and if I have internet access, I will let you know everytime we hear news. The cath and EP study is expected to take 6-12 hours. Lindsay will be sedated and on the ventilator. If it's closer to 12 hours, there is a good chance she will go to PICU and stay on the vent for the night. But we are praying that she'll be done closer to the 6 hour time frame and go to the cardiac floor after her procedure. Please pray specifically for the doctors to see everything they need to see in preparation for her surgery. Also, that God would hold Lindsays heart in the palm of His hand and control every heart beat. We are praying that the areas causing her arrhythmias would be determined easily and that they would be able to take care of them by ablating those areas tomorrow instead of during surgery. I spoke to the doctor at length last night and it seems everyone is in favor of placing an AV pacemaker in surgery to help safeguard Lindsays rhythm and help her rate get higher during exercise so that she doesn't feel as tired and has more endurance. The plan would NOT be to ablate her AV node and make her dependent on the pacemaker, but have it there for a back up as needed. The docs in Cinci felt this was the best option too. Lindsay is doing great. She doesn't seem to have any fears or concerns regarding the procedure tomorrow or the surgery next month. Please continue to pray for peace and comfort over the next couple of months.
Thanks again for loving us and caring enough to press onward with us!!!! It makes all the difference in the world to be surrounded by family in Christ!
Love you all.
More tomorrow.
Amy
Sunday, June 7, 2009 3:41 PM CDT
********Monday 7pm******* We are home. Lindsay came out of her arrhythmia last night around 7pm with just one dose of nadalol. She has been feeling fine all day today. Hoping to get through tomorrow without any events and head to the hospital Wednesday as scheduled. Until then.... keep praying! Love, Aim*********
Just a quick update... Lindsay's cath and EP study is scheduled for 10:30 or 11:00am on Wednesday. Since she is the 2nd case, she will go as soon as the first one is done. But, she stopped her medications on Thursday night as instructed by her doctors and today has begun having arrythmias. Spoke with her cardiologist who instructed us to give her a dose of nadalol and if she is not out by 9pm we will give her another dose. If she remains in the arrythmia in the morning, she will be admitted in the morning and they will manage her with IV beta blockers until her test on Wednesday. Praying for stable heart rhythms!
On to Mack... we received her Igg level and unfortunately it is starting to plumet. She was 780 last month and was 518 at this visit. The doctors would like to keep her above 600. Since it is the summer months and not as many germs going around, they are going to wait and see if her body can recover. Please pray for her body to produce both Igg and Iga and for immune system to fully recover and function properly. If it doesn't, it appears she may need IVIG long term which would require monthly infusions. On our knees pleading for recovery!
Thanks for praying for little Caden. He has made some encouraging improvements and continues to fight! Please continue to pray for his complete healing. I'll update again in the morning.
Much love,
Amy
Friday, June 5, 2009 6:17 AM CDT
We had a great time in Cincinnati! Mack had a good check up and is not scheduled to return until September. That seems unreal to us. It was a very profound moment when we were in oncology clinic on Tuesday. We really haven't spent much time in clinic because most of our follow up care has been in the day hospital. I was having flashbacks of the early days when Mack was diagnosed and so sick... we were in clinic in Chicago daily. Other kids were playing in the playroom, looking so healthy and Mack was always laying in her stroller like a limp rag doll. As soon as we walked into Clinic this week, she ran over and started playing with all the toys and I thought to myself how many times I wondered if I'd never see the day. It took us 5 years to get here, but here she was running around and feeling great. Praise God! Mack's CBC looked great, but we are still waiting to hear her Igg level.
Lindsay had an echo on Tuesday, followed by a consult on Thursday. We have been on our knees praying that God would make it abundantly clear where we should pursue her care and He answered those prayers. The doctors in Cinci were blown away by how good Lindsay's previous surgeries looked. They are very familiar with her team of doctors and think highly of them. Because of all the intricate work that has been done already on Lindsay's heart, the complexity of her prior surgeries and the uniqueness of her defects they told us they felt it would be beneficial to Lindsay to keep her care in Chicago. We met with Dr. Beekman, the head of Cincinnati's cardiology dept who said he has 2 main jobs. The 1st is advocating for the children and the 2nd is to grow their heart program in Cincinnati. In our case, advocating for Lindsay meant turning away business for their program and I was so appreciative of his honesty and his time. We just felt like this was clear confirmation to move forward in Chicago and we have much more peace in doing so.
Lindsay is scheduled to go inpatient this Wednesday June 10th for a cardiac cath with an extensive EP study with possible ablations to address her arrhythmias. If all goes well, she will only be in for one night and then discharged home. Please pray for protection of Linds heart during the procedure. I am still waiting to hear a time, but I know that she will be the 2nd case and they are expecting a very lengthy procedure. Praying that God would hold Lindsay's heart in the palm of His hand and control her rhythms. Praying that He would guide the wires into place without any difficulty and direct them to the exact places where they will gather the most information needed for her surgery in July. Praying for skill for the doctors doing the procedures, wisdom and knowledge that could only come from God regarding specific information on Lindsays heart and what it needs. Praying for peace and patience for Lindsay over the next couple months. Her surgery remains scheduled for July 13th.
Thanks again for always being there for us and covering us in prayers. I know I've told you this before, but your prayers have had such a direct impact on the course of our lives and we are so grateful for every petition brought before God on our behalf. We love you all! I will update as soon as I have a time scheduled for the procedure on Wednesday.
Much love,
Amy
Sunday, May 31, 2009 6:42 PM CDT
Heading to Cinci in the morning. I heard from Lindsay's team of docs here in Chicago and the plan is for Lindsay to have another cardiac cath with an extensive EP study and try to figure out what type of arrythmias her heart is capable of and where they originate. If they can ablate the problem spot in the cath lab, they will... but otherwise they will map it out and address it in her surgery. They are hoping to solve the problem this way and get her off her medications rather than ablating her SA node and making her dependent on a pace maker. Of course all this may change depending on what they find and even could change during the surgery. They will also get a better look at her pulmonary arteries and pulmonary pressures when they are in the cath lab which will help them decide if they will do more pulmonary artery reconstruction or not. They will remove the event monitor that she currently has placed during her surgery on July 13th. I forgot to ask what their thoughts were on a synthetic conduit vs. a cadaver. They will also make the decision on whether or not to address the last collateral artery she has after they get more information from the cath. They have prepared us for a very lengthy procedure... up to 12 hours. Lindsay will be under general anesthesia and on the ventilator during this time. She will spend a night or two in the hospital and then be discharged until her surgery. I'm hoping to get the cath/EP study scheduled asap and will let you know the date when we hear word. We are feeling more confident about keeping Lindsay's care in Chicago, but are still investigating Cinci and praying that God would lead and direct us where ever He wants us to be. We are keeping our minds open, and are listening for His whispers, as we are willing to go wherever He leads us, whether that be Chicago, Cinci or elsewhere. He has been incredibly faithful in leading the way and I am confident He will give us peace as we lay our lives down and surrender to His Will.
As we prepare for the valley, I'm asking you to pray for another family, who find themselves in the valley today. Their son was born with a very complex heart defect and just underwent his 2nd open heart surgery. He is fighting for his life and I ask that you join me in storming the gates of heaven and praying for healing for a precious little boy named Caden. You can read more updates on his web page at: www.thesmithsbaby.blogspot.com
Mack has her oncology follow up on Tuesday morning and Lindsay has an echo Tues. afternoon. Our consult with the cardiologist is Thursday moring. Please continue to pray for wisdom, guidance and direction as we make these very important decisions. We love you all and feel so incredibly blessed to have such an incredible army of God fighting with us and praying us through. I can't imagine going through all of this without you guys. I'm also thrilled that you can experience God with us and learn some awesome life lessons through our trials. Let's lock arms and continue to march into the battlefield trusting God with confidence that He will care for our every need!
More soon,
Love,
Amy
Thursday, May 28, 2009 7:57 PM CDT
***Friday 8:45am*** Just got a call from Cinci... Lindsay has a consult there on Thursday June 4th at 9:00am. Still waiting to hear from her doctors here at Christ.**********
Amazingly we are already beginning to see God's handprint all over the the coordination of Lindsay's surgery. We are still scheduled for July 13th at Christ Hospital/Hope Childrens, but we are working on getting a consult with cardiology in Cincinnati next week when Mack has her appointment. I was really feeling like the delay in her surgery may have been God opening a door for us to look elsewhere and I didn't feel like I could just ignore that. I talked with Mack's clinic nurse who had a contact in cardiology and made a phone call for us. It sounds like the director of their program will meet with us next Thursday, but that is not yet confirmed. Please pray for those details to be worked out.
Also, Lindsay had an orthodontic appointment today and I mentioned that she would be having surgery this summer. The orthodontist said that everything in her mouth would have to come out for surgery. I was shocked. No one has thought about that, or mentioned it, nor would they have. And remember how we have been wanting to get her internal monitor out so she can have her MRI for better imaging? Well, she can't until the appliances in her mouth are out. I never even thought about that! Amazingly, Lindsay is at a transitioning point in her ortho treatment and they are ready to take the current apparatus out. Instead of moving forward and putting the next one in, they are going to make her some removable retainers that will hold everything in place and after surgery and MRI's, they will put the next appliance in. Taylor already has her full set of braces and they started at the same time. Lindsays teeth have been slower to move and thus she doesn't have her braces yet. It would have been a HUGE deal if they had to remove all the braces, etc. not to mention the cost! I walked out so amazed that God never forgets the little details and continues to provide for every need. Thank goodness her orthodontist knew what to do for her surgery, because I would have never thought about her mouth and I doubt anyone else would have either!
We are leaving for Cinci on Monday. Mack has her appointment on Tuesday and we are hoping to meet with the cardiac team on Thursday. I still have not heard any news from Lindsays doctors here regarding their meeting yesterday. I'm guessing they may have pushed back their discussion since her surgery was pushed back to July. I'll have to get on them next week because if they want further testing to be done before surgery, that all takes time and believe it or not, we still have lives to live. We are still hopeful that we'll make it to the cottage for our traditional "family week" the first week in July, but the rest of our summer plans are pretty much shot.
Thats about all I know for now. I will keep you posted as I hear news and/or get updates from doctors. Thanks again for praying us through... just when we weather one storm, another one brews. Your prayers are so important to us.
Sending our love,
Amy
Saturday, May 23, 2009 7:04 AM CDT
*****Tues 5-26-09 UPDATE**** Just heard from the doctors on a date. Lindsay's surgery is scheduled for July 13th. Apparently her surgeon will be out of the country for several weeks and they did not want to do the surgery until he returns and we'd prefer he be in town the entire time she is inpatient too! It still stinks that it is right in the middle of the summer and we had plans to be gone for the month of July. I guess we are used to plans changing by now. Please continue to pray for the doctors as they meet tomorrow to make some very important decisions regarding Lindsay's surgery. I'll let you know when I hear their plan. *********
Well, just when we thought we would coast along for another 6 months to a year everything changes. Lindsay started having cardiac symptoms about a week ago. I've been on the phone with her cardiologist nearly every day and yesterday she was in for some further testing. What we've known was inevitable is here. The homograph they placed to connect Lindsays heart to her lungs over 11 years ago has become constricted and it is time to replace it. Lindsay will be having another major open heart surgery in the next couple of weeks. Her team of doctors will be meeting on Wednesday to put their heads together and devise the best possible plan for Linds. We are asking prayers for wisdom and discernment for her doctors, especially during this meeting. Some of the issues to be determined are: what type of homograph to use; synthetic vs. cadaver. One of Lindsays pulmonary arteries is much larger than the other so they are contemplating trying to open up the right side and or reconstruct the main branch. She has one collateral artery remaining that branches off her aorta which they would like to address by either tying off or somehow getting rid of it, but they are not sure how much her body is dependent on that artery or if it is insignificant and the risk of dealing with it is too great, they may just leave it alone. Also, they are not sure if they should ablate her SA node so her body's natural pace maker would no longer work and then put in a pace maker or pace maker / defibrillator device which she would be dependent on for the rest of her life. Also, they are discussing whether or not to do some more testing such as another cardiac cath or lung perfusion test to gather more information before going into the OR so they are fully prepared once they open her up. Of biggest concern is the fact that her current homograph ly's between her heart and her sternum and has most likely adhered to her sternum which means there is a very large risk of that conduit rupturing when they open her sternum.
Lindsay is doing remarkably well. It's so different for us now because all the girls are older and we now deal with fears and emotions, but everyone seems to be okay, for now. Of course they are asking the very real questions like, "Can she die?" and our answer to that is: "Anytime you have a surgery no matter how large or small there is a chance you can die. Just like everytime you get into a car or ride an airplane, there is a chance you can die. But God has faithfully walked by our side through all of our trials with Linds and Mack and He has provided for our every need attending to every detail... WHY would we stop trusting Him now and WHY would we doubt that He would continue to care for us. He is capable and He is able and He is faithful. He will never leave us and He will take care of us no matter the outcome."
So we find ourselves surrending again, and laying it all down at the foot of the cross. We are also asking prayers that God would make it very clear to us where the surgery should take place. We are planning on keeping her care here at Christ Hospital in Oak Lawn but are open to investigating Cincinnati or elsewhere if God were to leads us there. Please pray for peace, especially for Lindsay and the other girls. Also for wisdom for Steve and I in dealing with everyones emotions. We have so much to be thankful for and are so grateful that God never gives us more than we can handle. As much as we don't want to find ourselves living in the hospital again, the timing couldn't be better and we are confident that is God's provision. I mean think about it. Mack is at a point in her treatment where things are relatively stable and her appointments are now spacing to every three months. Steve and I both have the summer off of work and don't have to worry about the stress of our jobs. The kids are done with school on Thursday so Lindsay won't miss school and things will be easier with help for the other girls since they will not be confined by a schedule. Having the surgery before Lindsay enters high school rather than while she is in high school is so much better for her. God is good... He is always good and we continue to focus on His many provisions and blessings in our lives. I will know more details and a date on Wednesday or Thursday this week and will post as soon as I know. I can't help but think of the poem my friend Heidi wrote 11 or 12 years ago:
If you listen very quietly,
you might just hear their wings.
I've been walkin' with my Jesus
and He's tellin' me these things.
That there's angels all around me
to protect me from all harm.
Within their wings I'm hiding
and I'm sleeping in their arms.
So BE PATIENT WAIT ON JESUS,
for you know right from the start,
It is God who walks beside me
and He holds MY SPECIAL HEART!!!!
As for Mack... well, she couldn't be more proud of her first loose tooth. She is anxiously waiting for it to fall out so she can collect from the tooth fairy. She is seriously elated about this! She's almost done with her course of augmentin for her ear infection. I can't remember if I mentioned in my last post that when we were in Cinci last weekend for the Ball, we ended up in the ER with Mack and we thought they were going to admit her for IV antibiotics since her allergies make it difficult to treat. Fortunately, even with what we thought was a penicillin allergy, she has tolerated the augmentin. Praise God! I still have so much to tell you about the Ball, but this post is so long. So, I'll write soon.
Thanks again for all your love and continued support. Gear up prayer warriors, we're going into battle again.
Much love to you all,
Amy
Monday, May 18, 2009 4:07 PM CDT
Wow what an amazing night! The speech was great... the minute I got on stage, all my fears disappeared and it was so well received! Mack felt like a queen and worked the crowd on stage receiving a standing ovation. It was a very proud moment for me. Looks like I will be doing more public speaking in the future and I am actually looking forward to it! So much to share, but I'm exhausted and have a lot to do. Will write soon, but wanted to at least get the only three pictures we took posted... its a long story.
Love you all!
Amy
Thursday, May 14, 2009 7:30 AM CDT
A week of celebration! We have been rejoicing in the good news of healthy cells from Mack's repeat CBC this week and normal counts again! Thank You Lord! Steve turned 41 last Saturday, the twins turned 14 yesterday, tomorrow marks the 2 year anniversary of Mackenzie's transplant and I will be 29 again next Tuesday... hahaha. Okay, maybe 29+10. :-)
We are leaving for Cinci tomorrow for the grand Celestial Ball. Mackenzie is so excited, she can't wait to wear her dress. I'm feeling more and more nervous so please pray for peace, calm and confidence in the delivery of my speech. I will certainly post pictures next week.
I spoke with Lindsay's electrophysiologist yesterday and they have decided to do a small surgery in June to remove the internal event monitor that Lindsay had implanted when she was 3. They would like to use MRI imaging to better evaluate her homograph, but can't get good pictures with the monitor in. We are still waiting on her holter results. The MRI and stress test will be scheduled after she recovers from her surgery. It could possibly even be an outpatient surgery, so it sounds like an easy recovery. I will let you know when I have a date for that. Please continue to pray for protection and healing of Lindsays heart.
More next week.
Love to you all,
Amy
Wednesday, May 6, 2009 8:08 AM CDT
We had quite a scare the last couple of days. I had Mackenzie in to the pediatrician on Saturday for an ear infection. She also had a lot of wheezing and crackles in her lungs so she started Bactrim (she's allergic to a lot of antibiotics so its getting tough to treat these things) and nebulizer treatments every 3-4 hours. On Monday after being on antibiotics for 48 hours, she spiked a 102.5 temp. We took her back in and she had a chest xray, flu swab and blood work done. No pneumonia and no flu, but her white blood cell count was 23,000. We all freaked. In looking at the entire CBC and differencial, things were indicitive of infection, but given her history, no one felt comfortable. Mack's pediatrician spoke with her oncologist in Cinci and they had a pathologist look at her cells. I guess there was some initial confusion which caused a lot of concern and alarm, but after sorting things through they told us her cells looked healthy. I'm not sure what the confusion was about... apparently they originally reported she had 0 neutraphils and 0 lymphocytes which would be awful. Mack's pediatrician spoke with the pathologist and got the results directly from him which was a totally different picture from the faxed report they had originally received. That all makes me feel a little uneasy, but I'm trying to just let it go. They switched her antibiotic to Cipro and she's been doing better clinically ever since. We will go back to the pediatrician next week for a re-eval and repeat CBC. Please continue to pray for healthy cell production and clearing of any infections.
We are still waiting for Lindsay's 48 hour holter results and then we will schedule her MRI and stress test for June. She's been feeling great.
Lexie was home this week with strep throat, but she is now on the mend. When it rains it pours!
Please continue to pray for my speech on May 16th... I'm starting to get nervous. The speech has been written and approved, but I need A LOT of practice. I'm just not gifted in the "delivery" area so its going to have to be a "God-thing" to reach hearts and touch lives.
Thats about all for now... I will write again next week after we get Mack's lab results back. Also on a positive note, her Igg level is still holding. Continued prayers for good Igg production.
Much love to you all,
Amy
Saturday, May 2, 2009 4:05 PM CDT
Quick note to let you know that Lindsays check up was pretty good. Her cardiologist thought her echo looked alright and pretty unchanged from 6 months ago. Her ekg shows she is continuously in some type of arrythmia, but this has remained stable for 10 years. There were a few changed on her EKG and therefore she will have a stress test and a MRI of her heart and lungs in June to make sure we have as much info as possible. If those results are good, we will go on enjoying the mountain top and return in 6 months.
Sorry it has taken me this long to post an update. Things have been crazy here. Mack has an ear infection and some upper respiratory infection and has been a little more maintenance lately. The good news is, she is still feeling good.
Gotta run, lots of work to be done. Thanks for your continued prayers.
Love you all,
Amy
Sunday, April 19, 2009 11:21 AM CDT
Just a quick note to let you know that all is well here. Mack has been fighting a cold the last few days, but her body seems to be dealing with it.
We are still awaiting Lindsays cardiology appointment on the 30th to see if we will breathe easy for another 6 months or head to the OR. Please continue to pray for her homograph to remain wide open and allow blood to flow through without any resistance. Also for protection of her heart muscle and stability of her heart rhythm. We should have some results the day of her appointment and will know a tenative plan. I'll keep you posted.
We are heading back to Cinci the weekend of May 16th, but not for medical reasons. I've been asked to speak at the Celestial Ball for Cincinnati Childrens which will be held in the grand ballroom of the Duke Energy Center. We found the perfect gown for Mack and she is super excited to dance with her dad! I was very apprehensive to accept this amazing invitation because public speaking is my BIGGEST fear. But, after a little prompting from Steve and the thought of getting him into a tux again, I accepted. Please pray for confidence and peace during the delivery of my speech and that God would help me to connect with the words and speak from my heart. I will have much to share and many pictures to post after the big event.
Not much else for now. We are counting down the days until summer vacation and waiting endlessly for the weather to get nice!
Much love,
Amy
Thursday, April 2, 2009 2:20 PM CDT
We are back after another great trip to Cincinnati and celebrating what could have been Mack's LAST IV ever! Wahoooooo! Mackenzie's labs were good and her Igg level is still well within normal limits despite the lower dose she received last month. She received her last planned dose of IVIG on Tuesday and her doctors were pleased with her progress. We are in complete awe and "transition" as we won't return to Cinci until June 2nd at which point her visits will move from monthly visits to quartly visit (once every 3 months). It is so exciting! In June Mack will have a lot of labs drawn at her clinic visit to check her immune system, but other than that, it will be a quick visit. We will miss all of our friends in the Day Hospital, but are so excited to be moving forward.
As always, we made the most of our trip with swimming, shopping, dining, visiting with friends and enjoying the zoo. Mack got to feed the giraffes and that was pretty cool. We are waiting to hear back from Make a Wish to see if Mackenzie's trip to Atlantis was approved. It sounds like the logistic's take some time and the trip would take place sometime between September and December. I will keep you posted as I find out details.
Other than that, not much going on here. We continue to ask for prayers for Lindsay as her cardiology work up is at the end of this month (April 30th). Crying out for stability as the thought of anything else is too overwhelming. We are definately on borrowed time, but we feel safe and at peace knowing it is God's time! We continue to trust Him and His plan while crying out and pleading for more mercy and more grace. And at the same time, we savor every moment and cherish these days on the moutain top. We have drudged through enough valley's to know what could be before us. It has been 11 years since they placed Lindsay's homograph in her heart, which they expected to last 2-7 years. She will be turning 14 in May and we were told she wouldn't live past age 3. It has never been about numbers or statistics, but all about God's plan and His purpose for our lives. God has been so faithful in providing for our needs and giving us the strength and courage to press on. He is the ONLY reason we still stand today. We weep with gratitude as our hearts overflow with thanksgiving for all He has done for our family. We will always cling to Him and His promises which never waiver!
Much love,
Amy
Saturday, March 21, 2009 3:33 PM CDT
Of the many attributes of God, His faithfulness to our family has been so obviously apparent over the past 13 years. Anyone who has followed our journey and seen our struggles surely could not have missed God's many provisions over the years. The road has not been easy to say the least. The emotional roller coaster, the unknowns, the suffering and the constant struggle of fighting for control vs. surrendering and letting go. There is a tug of war that goes on inside me and I've seen this pattern so many times over the past 13 years. I could write pages and pages of examples, but let me first try to explain the pattern. It usually starts with a "variable unknown" that I fight to control which evokes fear and anxiety within. Sometimes subconsciously, I formulate a vision, a plan for how I want the outcome to be. Sometimes, it is a conscious blatent effort, but either way, the tug of war begins and I start holding on tightly to the "end result" of my vision. The more I hold on and try to manipulate it, the more stress and turmoil I feel within. And then I ask myself, "After all these years of God's tangible provisions, why would I doubt that He would stop providing for us? Why would I think my plan was better than His? Why wouldn't I surrender it all to Him?" And this begins the process of "letting go". I start laying it all down before Him, trusting in His constant care. With each piece I give up, I begin to have more peace and less fears. And once I finally let go of the last stronghold I have on the situation... God shows up in some unexpected. Its as if He provides a tangible reminder that we can trust Him. An affirmation that He will take care of us, and I am blown away by his presence and love.
So about two weeks ago, we were blind sighted by a letter we received in the mail from our insurance company stating they were no longer going to cover Mackenzie's monthly IVIG treatments which cost approximately $10,000 per month. Immediately, I was outraged and stressed out. In my mind, I was putting on my boxing gloves and ready to fight. Surrender was the last thing on my mind and my anxiety level grew quickly over the next couple weeks. Our doctors gather documentation and wrote letters of medical necessity and they were all denied. Mack's oncologist called to have a phone appeal with the medical director and it was denied. After gathering more information from Mack's charts and more research an appeal was sent to an outside consulting firm and was denied. Legally, we had one appeal left and then the decision would be final and irreversible. Mackenzie's doctors decided not to pursue the last appeal and try her off the IVIG. Their commitment to their patients along with the superior level of care provided was manifested in their assurance to us that if Mackenzie's Igg levels dropped, the hospital would provide her with what she needed without the financial burden on us. We thought we were in a "wait and see" holding pattern. My mind was travelling down the road of all the "what ifs" and I realized I had once again wasted much emotion and expended so much energy trying to do things my way. I finally started to surrender. Piece by piece I let go and just said, "okay Lord I trust you". And when I had fully surrendered, letting go of the last stronghold... peace washed over me and God showed up in unexpected ways. One of the music teachers at school asked if they could do a concert/dinner as a fundraiser for Mackenzie (which will be on May 14th for anyone who lives nearby). The next day one of the students asked if they could make bracelets and sell them to raise money for Mack. Another student came and asked if she could make donation boxes to put in her classroom and I was blown away by God's grace. Those were all incredible expressions of God's love, but He didn't stop there. He made the impossible.... possible. An unexpected call from our case manager, Carol, asking permission to move forward with our final appeal even though we had not gathered any further information to add to what had already been denied 3 times at three seperate levels. I didn't see the point and was fearful of the motive. I didn't want to waste our last appeal. I didn't want to take the last egg out of the basket. Not to mention, in my mind, I had a safety net in place from the hospital. I didn't want to be so vulnerable. I didn't even realize I was beginning to take it back into my own hands again. But Carol felt passionate about the needs for Mackenzie and was willing to go above and beyond to help get her medical care covered. I needed to surrender again by taking a leap of faith. I agreed to the final appeal. Yesterday we received news that the decision to deny Mack's coverage was overturned and found to be medically necessary!!!!!!! Praise God! His faithfulness is amazing. Thank You God for never failing us, for never leaving us and for allowing us to rest in Your arms. Thank you Carol for going the extra mile, for helping us in ways you may never realize and for putting up with all my fears.
We are still scheduled to be in Cinci on the 31st as planned. Please continue to pray for protection and healing for both Mack and Lindsay. And I will pray that God will reveal Himself to you in unexpected ways!
Much love to you all,
Amy
Sunday, March 15, 2009 9:05 AM CDT
***Monday March 16, 2009 UPDATE**** Insurance denied appeals. We are all in shock, including Mack's doctors. Praying her levels hold on her own.******
Not much new going on here. Mack has been feeling great and doing well at school. Mackenzie's IVIG treatment is before an appeals committee with her insurance company as they have denied coverage from this point forward. Her doctors and Cincinnati Childrens hospital have been fighting on our behalf. We continue to be amazed at the quality of care at Cinci Childrens and their commitment to going above and beyond for their patients. We are scheduled back in Cinci on March 31st which would have been Mack's last dose before trying her off the IVIG again. Please pray for God's wisdom to fall upon those making life changing decisions for our daughter. We are hoping to have some answers from the insurance company next week. I'll keep you posted.
Mack has begun her Make a Wish. I think she has finalized her wish on a trip to the Atlantis resort, but just like every other girl in this house, she changes her mind daily. It takes about 4-6 months to have a wish granted, so we will probably go sometime in the fall.
Thanks again for your continued prayers and support! We are so thankful for each of you!
Sending our love,
Amy
Saturday, February 28, 2009 12:33 AM CST
Back from Cinci and praising God for all His blessings. Mack's labs looked great. We decreased her dose of IVIG to the standard dose (she was getting a larger dose than normal). She will get the standard dose again at the end of March and then we will not return to Cincinnati until the end of May when she will have a whole panel of immune function tests done to determine if she can stay off the IVIG. Praying and pleading with God for healing of Mack's immune system. We are excited about the prospect of every other month or every third month visits. Also the insurance company is beginning to question her doctors about the need for IVIG as they don't want to pay the $10,000.00 per month cost. Needless to say, it's stressful.
Her neuropsych eval was good. I think overall her doctor was pleased with where Mack is at. Her results were very consistent with what they expected to see as a result of chemo and radiation to the brain. The good news is that even though it takes longer for Mackenzie to learn something new, once she's got it in her brain, she doesn't lose it. This was very encouraging. She will continue to need intensive help at school with PT,OT, speech and special education classes. The school has done a wonderful job at helping Mack and providing the services she needs. We are very grateful for this!
Lindsays cardiac work up is scheduled for April 30th. Please continue to pray for stability of her heart.
More next week.
Love,
Amy
Saturday, February 7, 2009 8:47 AM CST
Not much new happening in the Johnson's home. I am anxiously waiting for the basketball season to end in two weeks! It will be great to have Steve around again. I passed my vision screening certification in January and will have 3 days of testing for hearing certification this week. I CANNOT wait to have that behind me! I'm feeling better every week since having my sinus surgery, but it is a much slower process than I anticipated.
Mack has been doing well. We meet with the neuropsychologist at the end of the month to review the results of all her testing. We are hoping and praying that her body is producing Igg (a component of her immune system), so she can come of the monthly infusions of IVIG this spring. It is hard to believe that she will be 2 years post transplant this May! The miracle hasn't faded as we continue to fall to our knees in awe of His awesome power and grace EVERYDAY!
Lindsay's 6 month work up is coming up this spring. It's hard to even palate the thought of more heart surgery, more ICU experiences, more hospitalizations and more stress, but I trust that God will see us through as He has been amazingly faithful in doing for all these years. So for now, I'll just box up all those those thoughts and emotions and pack them away until I have to take them out. This ability to "compartmentalize" has become one of my life lines to coping with so many overwhelming issues. Clearly, my source of strength and courage is in my faith in God and my complete trust in His plan for our lives. Being able to surrender and lay it all down when I have to "unpack" those boxes is the key to survival. Letting go, and FULLY trusting in His constant care when it's all unboxed and exposed is the only way to experience peace in the midst of adversity. Please continue to pray for healing and protection for both Mackenzie and Lindsay.
That's about all for now. I'm off to study for my tests. Thanks for continuing to cover our family in prayer!
Much love,
Amy
Saturday, January 24, 2009 8:49 AM CST
Well, I made it to Cinci with Mack, Kali and Steve's mom. Mackenzie had a great visit with good news all the way around. All her lab work looked great, DEXA scan for bone density was above average so her bones look good, her body is producing the natural steriods it needs all on its own after being suppressed by taking steroids for so long, her hearing was perfect and her Igg levels are climbing! Yea God! Mack spent an entire day doing all of her neuropsych/ cognitive testing and did awesome staying on task and focusing despite the long day. We will get those results when we go back next month. Hoping to decrease her IVIG and try her off again this spring. Please continue to pray for her healing of her immune system and for her body to produce Igg. If she can stay off IVIG, our visits to Cinci would space out to every other month or every third month. As always, we stand in awe of God's incredible power, and faithfulness and praise Him for ALL He has done in our lives.
I'm still recovering from surgery, every day is a little better. The surgery itself was harder than I anticipated, but maybe just because I'm getting old! My headaches and facial pain have subsided and so far, everything is healing well. On the subject of getting old... Steve tripped over his own feet while playing basketball and injured his foot pretty badly. I think he's planning on going over to get some xrays today.
That's about all that's going on around here. I'll be busy studying for the next two weeks for 3 fun days of testing for my hearing screening certification. I'll be SO glad when thats all over with! Heading back to Cinci at the end of Feb.
Sending our love,
Amy
Thursday, January 15, 2009 3:30 PM CST
Just a quick note to let you know that I had my surgery on Tuesday morning. It's been a very rough go! The "mystery" in the left sinus cavity was a bone spur in the formation of the cavity itself and so there was nothing they could do about it. All those "tooth" jokes for nothing! Apparently if it is the source of my facial pain, I will need to see an oral surgeon at some point in the future but we are hopeful that what was accomplished in this surgery will resolve the issue. I barely remember speaking with my doctor post op, but Steve says all went well. The recovery process has been brutal. I had the packing from my sinuses removed yesterday and it was like giving birth through my nostrils. There are still plastic splints holding the septum in place that will be removed on Monday... not looking forward to that, but they assure me it is nothing compared to the packing. Please pray for relief from these horrible headaches... (all part of the healing process, I think), protection from infection and for the swelling to resolve so I can breathe through my nose again!
I am still planning on heading to Cinci on Tuesday with Mack and Steve's mom providing my appointment at the doctor goes well on Monday and things look good enough for me to travel. Mack will have her neuropsych testing all day on Wed the 21st and see the endocrinologist and oncologist on the 22nd along with her infusion of IVIG. She will also have her hearing tested before we head back home. Please continue to pray for healthy cells, healing of her brain and immune system and protection during cold/flu season.
Well, the vicodin is setting in... gotta go lay down. Thanks for your prayers and continued love and support for our family. I'll update again in a few days.
Much love,
Amy
Tuesday, December 30, 2008 7:03 PM CST
*******WED Dec 31st 5:20 PM UPDATE***** Good news from the cardiologist! Mack's stent is wide open and the blood is flowing without any resistance! Her heart function is excellent and overall he was very pleased. Her EKG continues to show some small abnormalities (mostly just a bunch of PVC's) but she has complained about periods of her "heart going fast" and so she'll have an event monitor this month to try and catch one of these episodes. If there are no concerns from the results of the event monitor, we will begin seeing the cardiologist annually. If there are concerns about any rhythm issues... we'll go from there. The endocrine labs and Igg level from yesterday were still not back yet, but her kidney and liver function labs looked great. We should hear the results of the remainder of the labs next week. We will also get the results of the DEXA scan at that time. As we were leaving the hospital today, Mack said, "This was the best day of my life." I asked "why" and she said, "because I didn't have to get ANY pokes!" Please continue to pray for healing, especially of Mackenzie's brain which could not have humanly escaped a major hit from all the chemo/radiation BUT we know that God is fully capable of protecting her brain, and/or healing any damage that may have occured because of her treatment. I'll update again next week when I have the rest of the results from this weeks tests. We will be back in Cinci on Jan 21st and 22nd for many more follow up appointments and testing. Also, I'll keep you posted on my sinus surgery Jan 13th. I have a deviated septum which they will fix and something in the left sinus cavity that they says looks like a "bone chip" or "tooth" from the CT scans. My doctor brought his partners in to look at the films because it's very "odd". Apparently it appears like a tooth surrounded by either tissue or fluid, but I've never had any sort of injury to my face and I'm not missing any teeth. Yes, Steve likes to remind me that I'm just a "freak of nature". Steve finds great delight in joking about "the tooth" and frequently asks questions like "how do you floss up there?" On a serious note, please pray that they are able to identify this mystery foreign body and resolve the problem by removing it without any difficulty or complication. Also prayers for wisdom and guidance for my doctor as many decisions will not be made unitl he is actually in the sinus cavity. And prayers for a quick recovery as the following week we are scheduled to be in Cinci with Mack. Thanks again for your constant support. I know it seems like its always something in our family and we are grateful that you have chosed to press on with us!!!! Actually, I can't imagine life without you all! Happy New Year!
Sending our love and much love, Amy*******************************
Just a quick update from Cinci... Mack did awesome today despite a difficult IV stick. It took so long to get her IV started and get her labs drawn that she missed her hearing screen this afternoon, but we rescheduled it for January. Most of the labs were not back yet, but her CBC looked good and we stand in awe of the work God has done in Mack's life. I should hear the results of the remaining labs tomorrow. After her tests/infusions, we met with the neuropsychologist. She was extremely knowledgable and we feel so fortunate to be connected to such a great program here in Cincinnati. She will have the extensive testing done in January and we will get all the results in February. It will be so interesting to see how much her treatment affected her brain. Praying for continued healing and another miracle! They expect signifcant delays in memory, retreival problems and difficulty with math concepts, along with concentration issues and visual/spacial concept abnormalitites. It sounds like they will track and follow her progress much more frequently than I thought and it will be a long process throughout her school years.
Tomorrow we go back for Mack's DEXA scan which will show how well her bones held up through treatment. I'm hoping all looks well, but we'll see if there are any signs of osteoporosis. She will also have her echo and we'll meet with the cardiologist. If her echo shows that the stent is being compressed, or there is any occlusion in her SVC she will be scheduled for another cardiac cath. If the echo looks good, I'm guessing we won't have to do anything for another six months. Keep praying!
So thats the latest. I'll update again tomorrow afternoon when I have more info. We are staying in Cinci for new years eve and heading home on the 1st. Mack's the cannonball queen of the pool here at the Radisson. And she's quite impressed with herself after learning to float on her back! I keep having flashbacks of her sitting on the pool stairs when we first got to cinci... with her "tubies" taped up so they didn't get wet while she splashed a little... desperately wishing she could go in the pool. Now I see a carefree little one, jumping in the pool without any reserve and loving every minute of it... PRAISE GOD! We are grateful for every moment!
Much love,
Amy
Sunday, December 21, 2008 9:20 AM CST
Merry Christmas!
I know it has been much too long since I've posted an update. Mack has been doing awesome and we've been busy just trying to keep up with the "ins and outs" of life! She continues to enjoy school and loves being with the other kids. She recooped from her dental surgery quickly and is proud to show everyone her silver teeth. We are heading back to Cinci on Dec. 29th for her IVIG, ACTH stim test (to determine if her body is capable of producing steriods yet), a DEXA scan (to see if she has osteoporosis from all the chemo/radiation), she will see the oncologist and have the usual labs along with some endocrine follow up labs, she will have a hearing test, meet with the neuropsychologist, see the cardiologist for her follow up echocardiogram (to determine if the stent they placed is keeping the vessel leading to her heart open) and various other bone marrow transplant follow up studies. We will ring in the New Year in Cincinnati and come home on Jan. 1st. Mackenzie will continue to go to Cinci every month for check up's and infusion of IVIG to boost her immune system. In January she will have her neuropsych testing and we will have a good baseline to see how much her brain has been affected by the chemo/radiation. Please continue to pray for healing of Macks brain and particularly the memory part of her brain. She will also see the endocrinologist in January.
Reflecting back on this year has been overwhelming. I'm at a loss for words to describe our gratitude for all we've been blessed with! Please continue to pray for Mack, Lindsay and our whole family. I truly hope you realize that YOUR prayers have been a huge part of our navigation in life. We are so thankful for each and everyone of you!
Lindsay saw a new electrophysiologist last month and things are status quo. She will have her cardiac work up in the spring and we're praying for more time before she has to go back for surgery. I'll keep you posted. I'm heading to the OR myself on Jan. 13th, just sinus surgery. Seems minor after all we've been through, but it IS another thing on our plate. Please pray for protection during the surgery and wisdom for my doctors.
We hope you all have a wonderful holiday season. We continue to praise God for the gift you have been to us and pray that He blesses you in an unexpected way this year. Thanks for your love, support and all you do!
Merry Christmas and Happy New Year!
Steve, Amy and girls
PS I added new photos in the album that you can actually see. :-)
Friday, December 5, 2008 11:23 AM CST
Mack had her dental surgery this morning at the hospital. She did awesome and the staff was amazed at her compliancy and positive attitude. She had 9 fillings, 2 caps, 3 extractions, 6 sealants and extensive cleaning and flouride treatments. The restoration is complete for now, but she will need more in the future. X-rays show that all of Mack's big teeth are there, but they are not developed yet, so it is hard to predict how much will be needed down the road. She'll follow up with the dentist here in 6 months.
We are currently in her room in the Day Hospital and waiting to get her IVIG infusion. She's still pretty groggy from her anesthesia, and her throat is raw from being nasally intubated, but she's doing pretty well. She is very excited about the tooth fairy coming tonight because the hospital gave her a "certificate" to give the tooth fairy since they took her teeth. :-)
Planning on leaving tomorrow and I hear there is snow on the way, praying for safe travels.
Labs looked good today and we continue to praise God for her new cells and healthy marrow!
Returning to Cinci at the end of December. Please continue to pray for healing of Mack's brain... for her ability to learn and retain information and for improved ability to retrieve information. Also, continued prayers for her heart function and for the stent to remain wide open.
We are so grateful for all the provisions God has provided, for this amazing hospital and the entire staff here at Childrens.
Sending our love,
Amy, Mack and the gang
Tuesday, December 2, 2008 7:19 PM CST
I hope you all had a great Thanksgiving holiday! Even though this is the season where we all reflect on the things we are grateful for, we truly feel blessed every day. The "shock and awe" factor of the miracles we've witnessed in Lindsay and Mackenzie's lives only become more vivid and powerful as the years go by. God continues to amaze us with his mercies and grace everyday!
Lindsay saw the electrophysiologist last week and things looked stable. The next time she has surgery, they will definitely be putting in a pace maker... new technology called bi-ventricular pacing which they commonly use in adults, but are now using on kids. When she has her cardiac cath in preparation for surgery, they will actually do a 3D echo through her esophagus while they thread leads through the vessels in her groin up to her heart. They will watch her heart function as they position the electodes in different places. What they are finding is that by mapping out the heart and finding the most optimal position for the electrodes, it will actually affect the heart globally by improving heart function too. It's amazing how far technology has come since Lindsay was first diagnosed! The mapping will be done through cardiac cath, but the pace maker will actually be placed during her next surgery. Hoping and praying it will be later than sooner!!!!
Mack has been doing great. We are heading back to Cinci on Thursday. She will be having major dental surgery in the main OR of the hospital on Friday morning. They say the surgery will be about 3 hours. From what I understand, they will be pulling teeth, placing crowns, doing extensive cleaning and xrays, etc. This will be the first of many years of reconstructive and cosmetic dentistry for Mack. Fortunately, one of her best friends, Caroline, has a crown and so Mack's fired up to have a matching silver tooth! See the little blessings in life... we appreciate them all! After surgery, we'll go to the day hospital where we'll see the oncologist and get her infusion of IVIG. Then we will go back the last week of December when she will see the oncologist again, more IVIG, a Dexa scan to see how the steriods have affected her bones and if she has osteoporosis, have a ATCH stim test to see if her body is producing steriods on its own. She is finally off the steriods as of last Friday!!!! She will see the endocrinologist, and the cardiologist, have another echocardiogram to evaluate the stent function. Praying that it remains wide open and no more intervention would be needed. She will also have her first visit to the neuropsychologist and then have all her cognitive/memory testing done in January. She will also have her hearing tested and maybe something else, but I can't seem to keep track of it all right now.
And in between it all, we will celebrate Christmas praising God for the birth of His precious son! Please continue to pray for God's hand of protection to be over our family and for safe travels to and from Cinci. It's never fun traveling when the weather is unpredictable. Also continued prayers for good health and healing over all our girls.
Better run, but just wanted you all to know that we are thankful for each of you and love you all so much! You continue to bless us in so many ways and your relentless gifts of love, prayers and support have kept us going. I'll write on Friday from the hospital as I get updates.
Much love,
Amy
Saturday, November 8, 2008 8:53 PM CST
Just got in the door from Cincinnati. Mack had a good check up. Labs were good, IV was started with 1 stick, infusion was uneventful and we had a great time. I had the opportunity to share our gratitude in a speech given to donors of the hospital. It was amazing to reflect back on all the hospital has done for us. Mack got to play with her best friend Caroline... swimming, shopping and dining out, does it get any better than that? Of course, our shopping extravaganza included a trip to build-a-bear!
Next month (Dec 5th) Mackenzie will have dental surgery at the hospital. I guess the work that needs to be done is extensive and therefore it will be done under general anesthesia in the main OR. They said it would take about 3 hours to put some crowns on, extract teeth, extensive cleaning and xrays. After her surgery, she will get her infusion of IVIG again.
I'm exhausted from the trip... heading to bed. Thanks for continuing to pray for Mack and our family.
Much love,
Amy
Saturday, November 8, 2008 8:53 PM CST
Just got in the door from Cincinnati. Mack had a good check up. Labs were good, IV was started with 1 stick, infusion was uneventful and we had a great time. I had the opportunity to share our gratitude in a speech given to donors of the hospital. It was amazing to reflect back on all the hospital has done for us. Mack got to play with her best friend Caroline... swimming, shopping and dining out, does it get any better than that? Of course, our shopping extravaganza included a trip to build-a-bear!
Next month (Dec 5th) Mackenzie will have dental surgery at the hospital. I guess the work that needs to be done is extensive and therefore it will be done under general anesthesia in the main OR. They said it would take about 3 hours to put some crowns on, extract teeth, extensive cleaning and xrays. After her surgery, she will get her infusion of IVIG again.
I'm exhausted from the trip... heading to bed. Thanks for continuing to pray for Mack and our family.
Much love,
Amy
Wednesday, October 29, 2008 6:18 PM CDT
I sure miss hearing from you guys on a regular basis, but I'm thrilled that our status quo updates imply that we are busy "living"! Mack continues to feel great outside of cold symptoms here and there. Her IEP meeting last week went well. The school did minimal testing as Mack will have her comprehensive neuropsych testing done in Cincinnati in December or January. The school testing shows Mack on the very low end of average which is truly miraculous. We understand that those percentages will most likely fall as concepts get harder, but then again... we aren't ones to put our faith in numbers and percentages, right?!?! We ask for continued prayers for healing of Mack's brain which has been "damaged" by the chemo/radiation. Specific prayers for healing of the memory part of her brain!!! We truly believe "all things are possible!" She absolutely loves going to school and the school has been so good to her. She will continue to receive special education along with speech therapy, occupational therapy and physical therapy. We are so grateful for the school's willingness to help in being proactive in Mackenzie's education! We are heading back to Cinci next week for another infusion of IVIG and check up on Nov. 7th. Everytime I blink my eye, another month has gone by.
Work has been super busy. I am involved in running a "Biggest Loser" contest and we have 74 staff members going for the title! I'm passionate about teaching healthy lifestyle changes, so it has been really fun. The Daily Herald will be covering our story and I will keep you posted when that will run. Our goal is to lose 700 pounds as a group in the next 13 weeks. Wow, huh?!?
The rest of the girls and Steve are doing well. Taylor just finished her basketball season, Lindsays in Drama Club, Student Council and Yearbook Club. Steve will soon be starting his basketball season and I am already counting the days until it is over! Lindsay will see the electrophysiologist at the end of November. Please continue to pray for stability of her heart rhythm.
Thanks for continuing to check in on us. We love you all more than you know and are SO grateful for your faithful support! We have been amazingly blessed to walk with you hand in hand... in the valley AND on the mountain top!!! Praise God!
Many hugs and much love,
Amy
PS I'll write again after Mack's appointment next Friday.
Saturday, October 4, 2008 9:39 AM CDT
For some reason, this month's trip to Cincinnati was very profound for me. Maybe because the fevers Mack has experienced over the past several weeks brought up alot of baggage from the valleys of the past or because I'm feeling sentimental as she is turning 6 this Tuesday (Oct 7th). But I find myself praising God in a new way. His grace is sufficient and consistent and it continues to amaze me! The IV team started Mack's IV with one poke... unless you have seen your child as a pin cushion, you have NO IDEA and will never fully appreciate how much of a gift that is! Her IVIG infusion was uneventful, without reaction. Mackenzie's labs were good and her doctors were pleased after looking at her cells under the microscope. We reflected on the miracle of Macks healing and Gods amazing grace that sustained her through the fire, leaving her without even the scent of smoke. It was like watching a film in my mind of the last four years and the "shock and awe" factor of what God had done in Mackenzie's life and for our family, hit home hard. How do you say "thank you" to a family who donated life saving cells over 11 1/2 years ago, to nurses who carefully collected those cells, to scientists who delicately froze and stored them. To doctors who knowledgably chose them, to technicians who unthawed and intricately washed them, to the team who delivered and adminstered them to our precious little girl who's broken body was failing... and most importantly to a GREAT God who oversaw it all, who brought it all together as we desperately sought His plan, who's grace and mercy carried us during dark days and who's faithful love never waivered. There just aren't words to express gratitude on that level. Its so far beyond our human comprehension, but we have been amazingly blessed to view a fraction of God's blueprint for our lives. And THAT is where we continue striving to align our lives with, and where we place all of our hope for the future!
Our next appointment is scheduled for Nov. 7th. Please continue to pray for protection for Mack as we enter cold/flu season. Praying that her new cells will learn how to fight infection and maintain memory to fight germs in the future. Also prayers for healing of her brain from all the detramental effects of radiation and chemotherapy. Her IEP meeting at school is set for Oct. 22nd and we are still waiting to hear when her neuropsych eval and testing will be done in Cincinnati.
Thanks again for always "being there" for our family and for covering us in prayer. Words continue to fall short when we attempt to express our appreciation!
Love you all,
Amy
PS I finally added new picture to the photo album, but I forgot to resize them, so they are very large. Sorry.
Thursday, September 25, 2008 6:38 PM CDT
Just a quick note... Mack had another fever over the weekend and started with another cold. Went to the pediatrician and started an antibiotic yesterday for a sinus infection. She seems to be feeling better already today. Please continue to pray for protection over Mack as her body tries to fight all the bugs at school. Heading to Cinci next week, her appt is on Friday. She still loves school and works hard. Her IEP meeting will be next month. The school has been wonderful in working with Mack and giving her the support she needs.
The weeks keep flying by without much down time... work is insanely busy, and the girls are involved in all different activities. I'm absolutely dreading basketball season. Not sure how I can do it all when Steve starts coaching again. Brutal!
Gotta run, but just wanted you to know that we are grateful for your love and support! Keep praying!
Love and hugs,
Amy
Saturday, September 13, 2008 9:18 AM CDT
Things here have been relatively calm. Mack is still fighting a cold, but no fevers since last weekend. Praise the Lord! She still seems a little "run down" and tired, but her schedule is busy and it could partially be from the early mornings and long days she has.
Lexie had a fever toward the end of the week and now has similar cold symptoms. Guess its going around, school is a breading ground for germs!
We had a domain meeting at Mack's school to see what testing needs to be done and the teachers said she is doing extremely well. Miraculously, she actually tested above average cognitively and they said she was more prepared for kindergarten than most of the children in the class. Without a day of classroom preschool and being extremely sick for 4 out of the 5 years of her life, this is a testimony to our great God and the benefits of early intervention. All of Mackenzie's therapists have been so invested in her life and their efforts have made an incredible impact on her. We are so grateful for all the time and energy (and love) they have given Mack! Although we are thrilled Mack is doing well, we also realize that most of the material at this point is review, and she will most likely have difficulty as the concepts get harder. The school is going to do minimal memory and language testing because Mack will have the entire comprehensive and extensive Neuropsych Eval at Cincinnati Childrens sometime in the near future. This will help pinpoint the area's of learning that will be most difficult for Mack.
Not much else happening here. Steve and I have both been extremely busy with work. I'm starting to help out with Fellowship of Christian Athletes at my school and I'm excited to see how God uses FCA. Looking forward to working with students who have a heart for Christ.
Not much else for now. Scheduled to go back to Cincinnati on October 3rd for labs and monthly IVIG. Please continue to pray for protection for Mack and our entire family. Much love,
Amy
Saturday, September 6, 2008 9:58 AM CDT
Steve and Mack made it back from Cincinnati around midnight last night. Mack had a pretty good check up, but unfortunately, her Igg levels have continued to drop. Her immunologist said he was not surprised or alarmed... he expects kids to need IVIG replacement for about 2 years after transplant and especially those who have had an umbilical cord blood transplants because those cells have a lot of learning to do. The rest of Mack's labs looked great, but since she needs IVIG monthly to boost her immune system, we will be back and forth to Cinci every month again.
Although I knew Mack's teeth were bad... I didn't think it would be as extensive as it is. She will have to go back to the OR at the hospital for decay removal, teeth removal, xrays, cleaning and possibly the beginning of reconstructive cosmetic dentistry. We won't know the full extent of what she needs until she is in the OR. We are trying to schedule this at the end of December with the rest of the tests and procedures she will have. Along with the dental surgery, she will see endocrinology again and have a stim test to see how well her body is producing its natural steriod, she will have a bone scan to see how much the steriods have affected her bones and whether or not she has any osteoporosis. She will also see cardiology and have a follow up echocardiogram to look at the stent and make sure it is not closing off again. She will see oncology and get her IVIG, etc. Shes still on a waiting list to have her neuropsych eval, but I'm not sure she will have that before the end of the year.
We had a scare last night after Steve and Mack got home... Mackenzie was shivering and spiked a 103 degree temp. I think I saw the last four years flash before me and relived every emotion of the leukemia diagnosis, relapses and complications in a matter of minutes. It was a sick feeling and I'm still trying to shake it today! She started with cold symptoms yesterday morning and has a runny nose and cough today. So far, no temp and she's acting fine. It's very strange... my gut feeling is that her body had some reaction to the IVIG although its weird that it happened 6 hours after the infusion. I've seen Mack react to IVIG in the past and this is exactly how it presents itself although it usually occurs during the infusion. After tylenol, benedryl and stess doses of steriods, the fever broke. It also could be a viral thing, but I would have expected to see the temp persist for a day or so if it was viral. Of course the dreaded "R" word is always looming, even though there is no indication in her lab work. We've had the carpet ripped out from under our feet so many times that we're gun shy. But I'm laying that all down at the foot of the cross because I simply can't carry that one... it is too big and too heavy. I'm continuing to claim the words that God gave me... "the healing is done" and trusting Him to care for Mack believing whole-heartedly that His plan is perfect and I can rest in that. I don't need to know what tomorrow will bring because I can rest in Him today. He's got tomorrow covered and will give us whatever we need to continue on. Please continue to pray for healing of Mackenzie's immune system and protection of her bone marrow. I find myself on my knees again praying that God would filter each of Mack's cells through His mighty hands and be merciful, gracious and loving to her, caring for her tenderly as He always has. He is good... always good!
So, if all goes as expected, Mack will return to Cincinnati October 3rd for her IVIG, and then again on Nov. 7th. Praying that her body can fight this cold without any difficulty and that God will continue to give Steve and I peace and courage. Praising Him for all the prayers He has answered and the many blessings He has given us. We are so grateful for all He has done!!! More next week. Love you all, Amy
Wednesday, September 3, 2008 7:27 PM CDT
Ok, I know it has been entirely too long since I've written, my job has completely consumed my life with craziness! Lindsay's cardiac eval last week went well. The cardiologist was pleased with her echo and ekg, but she needs to see the electrophysiologist for persistent break through arrythymias. We can breathe easy for another six months, no surgery on the horizon... yet. I'm thinking about taking Linds to Cincinnati to have an eval sometime when I'm down there with Mack. Speaking of Mack... she's doing great. She loves her teachers and loves school. Steve is taking her to Cinci tomorrow for her check up on Friday. It will be the first time that I'm not with her for a check up and I'm struggling with that, but it was too hard for me to take time off of work.... I'm so burried in stuff to do. Please pray for good labs and specifically for good Igg levels on Friday! Her face is becoming less puffy since having the stent placed in her heart and her headaches have nearly resolved. She was standing in the mirrow rubbing her hands on her belly and said, "Gee... I'm wreawy thinnin' out!" I was cracking up. She has taken a serious liking to the Jonas Brothers which is hard to avoid when you have four older sisters. Kali has convinced her to ditch Ace and marry the little Jonas... Frankie. And they are all working her like a 9 to 5 to use her Make a Wish to hang out with the Jo Bros. Hopefully, this too shall pass! haha.
Lindsay has joined drama club at school and Taylor is playing basketball. I think Steve is more excited for Taylor than she is! Its been amazing to think about things other than medical stuff!!! We are enjoying life! I'll let you know how things go on Friday with Mack's appointments. Thanks for keeping us in your prayers and continuing to love us the way you do!!!! Many hugs and much love, Amy
Thursday, August 21, 2008 7:52 PM CDT
Well... it's been a HUGE week for us. Mack started kindergarten and LOVES it! She's been waiting for so long to go to school and play with other kids. I wondered if we'd ever see the day, and by the grace of God, we've had the most amazing gift given to us in seeing her do "normal" things. She takes such pride in carrying her backback and riding the bus, it cracks me up. We all love to hear her stories even though she never remembers much about school. Her memory has definitely been impacted. We continue to pray for healing of her brain from all the side effects of the treatment she has had.
Lets see... other news... Lindsay had some strange arrhythmia last night, different than anything she had ever experienced before. It scared her so much that she asked to sleep with the monitor on and the alarms set. I think she was worried she might die in the night. She has her cardiac eval next Thursday the 29th. Please pray for a good check up and no surgery to be needed!!! We should have results that night and I will let you know. Then the following week Mack goes back to Cinci (Friday the 5th) and we are on our knees praying for good IGG levels so she won't need monthly infusions of IVIG.
This weekend I am taking the girls and their friends to see the Jonas Brothers in concert for Kali's birthday. She's basically freaking out because she is in love with Joe Jonas. No she wouldn't be embarressed that I'm sharing that news, she readily shares that info with anyone and everyone who will listen. And anyone who knows Kali... KNOWS how she feels about the Jo Bros!
Well, that's about all for now. Please continue to pray for health and healing for Mackenzie and Lindsay. I'll let you know how these next appointments go.
Love you all,
Amy
Friday, August 15, 2008 9:14 PM CDT
To view a copy of the magazine and article written about our journey:
Click here, then click on the Magazine Sixteen:Nine. You can flip through the pages of the magazine online. Mack's article is titled "Meeting God in the Valley" starting on page 20.
God is good! Much love, Amy
Wednesday, August 13, 2008 12:52 AM CDT
*********THURSDAY AUGUST 14TH 12:20 PM UPDATE************ DISCHARGED!!!! MACK HAD A GOOD NIGHT LAST NIGHT ALTHOUGH I DIDN'T GET MUCH SLEEP BECAUSE HER MONITORS WERE GOING OFF ALL NIGHT. I LAID ON THAT HARD HOSPITAL "COT" ALL NIGHT WONDERING HOW WE DID IT FOR 6 1/2 MONTHS!!!!! ONLY BY GOD'S GRACE, I KNOW THAT FOR SURE! MACK'S ECHO THIS MORNING LOOKED GOOD. SHE WILL SEE CARDIOLOGY AT THE END OF DECEMBER AND HAVE A REPEAT CARDIAC CATH SOMETIME AFTER THAT. PLEASE CONTINUE TO PRAY FOR THE STENT TO REMAIN WIDE OPEN. SHE STARTED TAKING ASPIRIN TODAY WHICH SHE WILL NOW BE ON FOR THE REST OF HER LIFE... NOT A BIG DEAL. HER BMT DOCS DECIDED TO HOLD OFF ON GIVING HER THE IVIG AND SEE IF HER BODY CAN START PRODUCING ON ITS OWN. SHE RETURNS TO CINCI IN 3 WEEKS FOR HER ONCOLOGY APPT, IF HER IGG LEVEL IS LOWER AT THAT TIME, SHE WILL START THE MONTHLY INFUSIONS OF IVIG AGAIN. PLEASE PRAY THAT HER BODY WOULD BEGIN PRODUCING ITS OWN IGG AND THAT REPLACEMENT THERAPY WOULD NOT BE NEEDED. MACK IS SUPER EXCITED TO SEE HER FRIEND CAROLINE THIS AFTERNOON, ITS ALL SHE'S TALKED ABOUT FOR THE PAST 24 HOURS. TOMORROW SHE'LL BE WORKING WITH A PHOTOGRAPHER TO DO SOME PUBLIC RELATIONS WORK FOR THE HOSPITAL AND THEN WE WILL HEAD BACK HOME. THANK YOU SO MUCH FOR EVERYTHING YOU DO FOR OUR FAMILY AND YOUR AMAZING WILLINGNESS TO KEEP CARRYING OUR BURDENS WITH US. I WROTE AN ARTICLE FOR A MAGAZINE... OUR STORY OF FAITH AND HEALING. I JUST RECEIVED THE EDITED COPY OF THE ARTICLE AND WILL POST IT HERE TOMORROW. KEEPING OUR EYES FIXED ON GOD AND CONTINUING TO LIVE IN THE MOMENT. THANKS FOR MEETING US IN THIS MOMENT! MUCH LOVE, AMY************
*******5pm update****** Praising God for a successful stent placement! Mack is done and back to her room laying flat on her back for the next 4 hours. The procedure went well... apparently the blockage was so bad that her bloodflow had reversed itself and re-routed. The nurse told us after Dr. Hirsch placed the stent and took pictures, it was so remarkable he exclaimed, "she's GOT to feel better!!" We are still hopeful to be discharged tomorrow providing that our night is uneventful. She will have a chest xray a little later tonight and an echocardiogram in the morning. The narrowing in the vessel was so tight that the stent is under a lot of pressure and therefore she may need to have another one placed in 4 to 6 months. Time will tell. Also, her Igg level fell from 630 last month to 504 now. 600 is supposed to be her cut off, so technically she should get an infusion of IVIG but the doctors are discussing whether or not they should wait and see what her body does. Mack comes back to Cinci in 3 weeks for an oncology appointment and some dental work so they may just repeat it then and see where she's at. Please continue to pray for healing and stability of Mack's heart. Also, that her heart would relax more and receive the blood with ease. It is a little stiff and they're not sure if thats because of all the treatment she has had or because of the way it was receiving blood flow. It may correct itself if its not from the chemo/radiation. Also prayers for a stable heart beat, the stent hangs into her heart and can be irritating, so we are praying that no more scar tissue builds up and that her heart rhythm remains stable. Continued prayers for protection from all infections and good blood counts. Her CBC from yesterday looked great. Words can't express our gratitude for all your prayers and concern. Pray for an uneventful evening/night and rest of us all. I'll update again in the morning unless there are unexpected prayer requests during the night. Love you all, Amy **************************************************
As always, I continue to be impressed with the hospital here in Cincinnati. Mack checked into her room this morning around 11am after a trip to Target to load up on snacks and toys... like she doesn't have enough! It was a good distraction as she was feeling very anxious about the procedure today. Once here, made herself right at home. I was able to go into the cath lab with Mack until she was asleep so she wasn't scared. They will put her IV in while she is out so she won't have any pain or anxiety related to the pokes. We spoke at length with Dr. Hirsch this morning and were impressed with his knowledge base. He thinks he will need to balloon several vessels in her neck, but only stent the vessel that enters her heart. Specific prayers right now for his catheter to be able to pass through the blockage because if he can't get it through, he can't place the stent and therefore she would require open heart surgery. Please pray for the catheter to pass with ease, from protection from all arrythmia's or irregular heart beats and protection of her vessels... that God would strengthen them and protect them from rupturing. The procedure is expected to be 2-4 hours and they will update us every hour. No news from me is always good news. The computer is not working in our room and so its a little harder for me to update. I will keep you posted as often as I get word and can get to the computer. So so thankful for your incredible support. More in an hour. Much love, Amy
Tuesday, August 12, 2008 6:23 PM CDT
We made it to Cinci! Mack and I slept a good portion of the way since we left at 4:30am, so it was a fast trip for us. Steve has hit the wall. Mack's appointment this afternoon took much longer than we expected. She had an echocardiogram, ekg, chest xray, exam and lab work. All was well until it came time to draw labs. I think Mack is the hardest stick I've ever seen and its extrememly difficult to draw blood since she's had so many IVs and been poked so many times. It took 4 pokes this time (Jane you can relate) and they finally ended up drawing the blood from a vein in her foot. It was very traumatic for us all. Sometimes the little things are harder than the big things. It hurts to see her poked and prodded so much. She's such a trooper and she bounces back so fast. After it was all done, she was all smiles asking to go to Build A Bear (guess she hasn't forgot the routine) and saying, "Thank you Jesus, Thank you God". Since it took so long to draw the labs, we won't have any results until tomorrow morning. We went out for pizza for dinner and now I'm sitting by the pool at our apartment while Mack is in the hot tub next to me. Heading back to be admitted tomorrow at 11am. I was hoping she'd have her IV put in after she was out in the cath lab, but it sounds like she'll get settled in her room, get an IV and then go to the cath lab. Please pray that someone with unbelieveably good skills will be able to start Mack's IV with just one poke. Continued prayers that Dr. Hirsch will be able to pass the catheter into Mack's heart and open the blockage with a stent. Praying for God's hand of protection to clear away any debris in Mack's veins from scar tissue from all the central lines she's had in and praying specifically for protection from all blood clots. Asking God to be present in the cath lab and tenderly care for Mack. Pleading for more mercy and more grace. Guidance and wisdom for Dr. Hirsch and also a steady hand and clear thoughts. Praying for stability for Mackenzie throughout the procedure and after, so that we will be able to go home as planned.
I will update as often as I hear word tomorrow. The procedure is scheduled for 1pm and will take 2-4 hours. They are supposed to come out at least every hour and give us an update. Thanks for praying us through this one because I feel so beat up its hard to keep going. I love you all and thank you for your words of encouragement, your thoughts and prayers. Praising God for the blessing you have been in our lives. More tomorrow.
Much love,
Amy
Monday, August 11, 2008 4:55 PM CDT
Packing our stuff and getting ready to head out to Cincinnati. Mackenzie has pre-op testing tomorrow afternoon and then will be admitted on Wednesday morning. Her cardiac cath is scheduled for 1pm on Wednesday. Please pray for protection over Mack and peace for us all. Each hurdle feels harder for me to get over, but I'm doing the best I can to keep running. Clinging to His promises and looking to Him for strength, provision, mercy and grace. Specific prayers for angels to stand guard over Mack, that the cath would be successful in opening the blockage in her heart, that NO surgery would be required, for God to guide Dr. Hirsch's hand and give him specific wisdom and discernment during the procedure. Praying that Mack would be discharged on Thursday and that she would be able to start school next week as planned. She is so excited about school she can hardly wait. It's been a good distraction from her fears. I will update again tomorrow when we know more and also throughout the day on Wednesday. Thanks for your amazing support for our family and your prayers that have carried us through more than I could have imagined!
Much love,
Amy
Saturday, July 26, 2008 8:38 AM CDT
*************Tuesday July 29th update*********** Just thought I'd let you know that Mackenzie's cardiac cath has been scheduled for August 13th. Please continue to pray for protection over Mack, and wisdom and guidance for her doctors. I'll write again soon. *********************
Hey guys... I'm sorry it has been so long since my last update. We are finally home after a wonderful family vacation together. Mackenzie saw one of Lindsay's cardiologists here in Chicago this past Tuesday and was scheduled for an MRA this week, but it was determined through echo that the blockage in her heart is significant enough that it will need to be opened, so the MRA has been cancelled this week. We have decided to have the procedure done in Cincinnati and are waiting for the schedulers to give us a date which we expected to be sometime in August. The plan is to place a stent through cardiac catheterization to open the blockage. Unfortunately, the blockage occurs right where the blood flow enters the heart and therefore the stent will need to "hang" into the right atrium of her heart. They will also investigate the vessels in her neck as she has a history of blood clots which will be one of the biggest risks to this procedure. Dr. Hirsch is anticipating having to balloon or stent other vessels from all the trauma they've been through with four years of central line placements. Please pray for protection over Mackenzie, for her vessels to be open and free of clots, for the doctor to have easy access and no difficulty in placing the stent. Also, please pray for the timing of the procedure, asking God to open up a place in the schedule as soon as possible so that Mack can be done before school starts and to resolve this problem asap as the doctors have all expressed a great level of "concern" about the high pressures in the veins in her head, neck and chest that this blockage is creating. Praying for a steady hand, wisdom, discernment, good judgement and skills for Dr. Hirsch. I'm still feeling "burned out" and the thought of another hospital stay and more "critical" procedures is weighing heavy on me. This time I carry Mack to the foot of the cross, lay her down and then lay myself down next to her... I'm exhausted and drained. I can't do this alone and therefore I am relying on God to carry me, hold me, love me and comfort me as He carry's us through another road block. He is my refuge and strength as I am completely depleted. Once again, I have to leave our lives in an open hand before God and say, "Above ALL things Lord, Your Will be done". It's out of my control and worrying about it won't change a thing. But letting go and trusting God, being completely dependant on Him, is the only way I find peace because His faithfulness has never waivered and I believe His plan is perfect. My willingness to accept His Will, above my own, does not hinder my plea as I pour out my heart and ask for God's divine intervention to protect our sweet Mack. Pleading with Him to open the vessel with His powerful hand or use man's hand to guide the catheter and place the stent without any complications is my heart's cry. Please join me in calling on the Lord and trusting in His care for Mack. I will let you know as soon as we have a date scheduled.
Other than that, we've been busy doing our "spring cleaning"... better late than never, right? Finishing "Extreme Room Makeovers" in all the kids rooms and gearing up for the school year. I start back to work August 5th!!! Lindsay has her cardiology work up scheduled in early September and I'll keep you posted as that approaches. Praying for her homograph to remain WIDE open and that surgery would not be needed at this time. I am so grateful to my friend Heidi who told me about Caringbridge almost five years ago when Mack was diagnosed. It has been so therapeutic and comforting for me to come here and share our needs and prayer requests with all of you and to celebrate the many victories and simple joys of life that many take granted. You have become family to us and we love you all dearly. Thank you for continuing on this journey with us and for your persistent prayers for Mackenzie. "Doing" life together is far more rewarding and fulfilling than the emptiness and strife of trying to "do" it alone. Opening our hearts to God and eachother has made us vulnerable, but ultimately has empowered us in more ways than we will probably ever know in this lifetime. We are so grateful for the gift of this Caringbride family!!!
Much love to you all,
Amy
Sunday, July 13, 2008 7:20 PM CDT
Just wanted to let you know that we've been having a great time together. After our trip to Cincinnati, we spent two weeks at the cabin in northern Wisconsin with family and friends. Mack rode a horse for the first time in her life and is now convinced that she needs her own. After trying to deter her thoughts on the matter, she was quick to remind me that she still has a "Make a Wish" coming her way. Radiation may have affected some areas of her brain, but NOT all of it! Mack was so happy jumping off the dock, tubing, dragging through the water on the boom of the boat, feeding black bear bottles of juice, petting deer, holding bunnies, fishing (she's got a mean cast even though we didn't trust her with a hook yet), four-wheelin and so many other "life experiences" for her OUTSIDE THE HOSPITAL SETTING! Emotions always hit me at the strangest time. I walked into the "kids room" at the cabin and saw everyone's name hanging on the wall that they had made out of sticks and "nature" stuff over the previous years and Mack's name was missing. I remember when she relapsed one of my "flash forward... I'll never see her do...." thoughts was that she'd never get her name on the wall at the cottage. I am happy to report through tears of joy that Mack made her name plaque and proudly hung it on the wall at the cabin. Everything seemed "complete". I have so many pictures to share with you guys, but our internet connection is slow, so I will try to figure out how you could view pics through a different link. I finally heard from Mackenzie's cardiologist in Cincinnati and they would like Mack to come back to have the blockage in her heart opened by placing a stent through cardiac catheterization. We are going to cut our vacation a few days short so we can get home and take her to see Lindsay's cardiologist for some more imaging and a second opinion. It seems more likely that this will have to be addressed in the very near future. Please continue to pray for wisdom for all her doctors and protection of Mack's heart. Also, asking God to open the blockage with His almighty powerful, healing hand so she would not have to endure more invasive procedures. I'm hoping to schedule her MRA and echo the week of July 22nd, I will let you know as soon as I have a date. We are currently in Minnesota staying with Steve's parents. Heading over to "Auntie's" house tomorrow as the girls have bardered with Steve's sister for haircuts and highlights. I will be getting a crash course in "foils" so I don't go broke at the hair salon over the next ten years!!!! And even Mack insists on getting some highlights... she is SOOOO proud of that wirey, wild, hair of hers!!!! Not to mention she wants to do EVERYTHING her sisters do! I'm flying out of Minneapolis on Wednesday to San Diego to spend 5 days in La Jolla for a girls getaway. As excited as I am to get away... I'm anxious to get Mack's imaging studies done and get life organized at home before returning to work. I return to MN on Sunday and we'll all drive home together on Tuesday.
Thanks for continuing to pray for health and healing for our family. We have been having a great time together and cherish the memories we are making. Life has changed so much as we appreciate and value even the smallest things and all of our time together. I hope we never lose that perspective. I'll try to update again next week after I return from California. Much love to you all, Amy
Saturday, June 28, 2008 8:04 AM CDT
Hey guys! We had a wonderful week in Cincinnati in between many doctor appointments and specialists. Mack and the girls went to Kings Island amusement park, a water park, the zoo, several parks, and swimming everyday. The weather was beautiful and it finally feels like summer! All in all, Mackenzie's check ups were good and the doctors are pleased with how things are going. The endocrinologist said that Mack has had so much radiation to her head that she will treat her like a brain tumor patient. She will have "adrenal insufficiency" for a couple years and therefore once she is off the steroids in December, we will need to give her oral supplements or injections of steroids whenever she is acutely ill. These "stress doses" are very important because if her body cannot produce its natural steroid under stress and we don't replace it, the situation becomes quickly life threatening. All of Mack's lab work looked good, her blood counts were great, her Igg level was 639. If it falls below 600, she will get the infusion of IVIG to help boost her immune system. Her visits have moved to every other month now which is amazing. BUT, we may need to go back before then because the blockage in Mackenzie's heart that the doctors have been following for several years now looks to be significantly worse on echocardiogram. I talked with Lindsays doctor here and they want Mack to have another MRA and echo done here so they can evaluate the situation. As usual, this is not a common problem that they see so there are many different opinions on the table. Please pray for wisdom and guidance and direction as we navigate these decisions. It doesn't appear to be anything that needs to be addressed immediately, so looks like end of July or beginning of August when we return from our vacation. I will hear Cincinnati's recommendation next week and that could change things, but we are hoping to continue on our summer adventure as planned. Also, Mack started with a cough this week, crazy how something so simple like a cough can raise so much alarm with a fragile immune system. Please pray for protection over Mackenzie (and Lindsay) and all of us while we travel. I'll update again next week when I hear back from the doctors and I'll post some pictures too. We love you all so much and want you to know how grateful we are that you continue to hold us up in prayer.
Much love,
Amy
Monday, June 9, 2008 7:50 AM CDT
Finally got word on Mack's immune studies and they were significantly better than the last time they checked. Most numbers were within normal and the few that weren't were about 90 percent of norm! I was actually at Target with Mackenzie when we got the call and I told her, she didn't need her mask anymore. She immediately ripped it off her face and crumpled it up in a ball while stating, "FINALLY!" It's a little scary seeing her out and about without her mask, guess we became somewhat dependant on the protection it provided. They are also thinking about discontinuing two of the medications she is taking prophalactically to prevent bacterial and fungal infections. She has about six more months of the steroid taper and then she will be off all medications. Her Igg level was good and so she did not receive IVIG this month. They will continue to watch that closely and if it trends down, they will restart the IVIG, but so far so good. Please continue to pray for protection for Mack and healing of any damage that has been done to her body from this long process of chemo and radiation and transplant.
We are getting ready to head out of town for about six weeks.... heading back to Cincinnati the last week of June for 6 days. Mackenzie will see most of the specialists she needs to follow up with during that week. From there we are going to northern Wisconsin for two weeks, then over to Minnesota for two weeks. I'll be flying out of MN to California for 5 days while Steve and the girls stay in MN. Then back down to Cincinnati for Macks appointment at the end of July and from there we are hoping to get down to Nashville and Memphis only to return in time to start back to work. It will go by so quickly! I'll be in touch and hopefully be able to post some pictures of Mack doing normal kid stuff!
Thanks again for your continued love and support. We are so grateful to have you walking by our side! It means more than you know! Much love, Amy
Sunday, June 1, 2008 8:05 PM CDT
We had a great trip to Cincinnati... so good, that it was hard to come home!!! I'm still feeling led to move south, but I haven't been able to convince Steve. Mack's counts were good, but we are still waiting on the immune studies which should be back at the end of the week. Dr. Mike was super excited to see Mack and thrilled to be discussing ways to promote health vs. ways to battle disease. We'll return at the end of June and probably stay for a week as Mack will see the Endocrinologist, Neuropsychologist, Cardiologist, Opthamologist, Oncologist, possibly a dentist and school interventialist. The reality of late effects from the chemo/radiation and bone marrow transplant are first and foremost on everyone's brain now. Mack definitely has developmental delays although she continues to progress. It is apparent that she will have some learning disabilites along with short term memory issues, but time will tell the severity. She's happy and thriving and to us, that is the most important thing, but we know that these things can become very frustrating down the road for her and we want to make sure she has all things in place to tap into resources to help her cope. We are extremely blessed to be connected to Cincinnati Childrens who's approach to care is comprehensive and thorough. It is such an outstanding hospital, and I continue to be amazed and impressed by their superior care.
Not much else going on here. I'm wrapping things up at work for the summer while Steve and the girls have another two weeks of school. I will let you know as soon as I hear results from Mack's tests at the end of the week.
Much love,
Amy
Wednesday, May 28, 2008 6:11 PM CDT
Heading to Cincinnati tomorrow, I can hardly believe another month has gone by. Work has been insanely busy, but I love it. I'm so attached to all the kids, I need to find my boundaries before I burn out. I'll be off for the summer starting next week and am looking forward to summer travels. We are travelling for five or six weeks, but I'll be in touch and keep you posted.
Mack is having her immune studies done on Friday and we are praying they are good enough that she will no longer need her mask when she is out and about. She is also hoping to be able to swim REALLY soon. It has been several years since she's been in water other than the bath tub, and she is dying to do some serious cannonballs!!! She's super excited to have her first sleepover with her best friend in Cincinnati and I'm looking forward to a night out with friends. Crazy enough.. some of the worst days of our lives were the best days. I miss all of our friends/family and staff in Cinci! AND I miss corresponding with all of you. I miss the intimacy with God that is only experienced in the valley and I miss my broken dependence on Him. In the valley, it was all so easy and came naturally, but now it takes so much conscious effort. Life has a way of pulling you in directions that occupy your time and mind with worldly "things"... things that are not eternal or lasting. Things that promise nothing and only provide you with temporary contentment. It's frustrating, but I will always strive to build my relationship with Him. He's my everything! I guess it would be fair to say that there has been a spiritual battle going on around us and satan would love to see us fall away and stumble. He so subtly deceiving that sometimes I don't even realize I'm off the path. Please continue to pray for guidance and protection for our family.
Not much else for now... I'll write again next week when I have all of Mack's lab results. Sending you all much love and many hugs, Amy
Thursday, May 15, 2008 7:11 PM CDT
HAPPY NEW CELL BIRTHDAY MACK!!!!!
It's a week long celebration for our family. Steve celebrated his 40th on Friday, I can hardly believe that! As of Tuesday, Lindsay and Taylor are officially TEENAGERS, which is even more hard to believe. Macks cells are a year old today and next Monday I'll be a year older, making me all of 28! hahaha!
We have been reflecting on the past year with great emotion, both happy and sad... happy for the miracle in Mack's life and sad for our friends who have lost to this monster called cancer! We are so undeserving of the abundant blessings that God has showered our family with and in our humility, all we can do is fall to our knees and praise our King! He is abundantly and exceedingly good! We continue to thank Him everyday for the mighty work He is doing in our lives. We also feel incredibly blessed to have such an amazing support system through all of you! You have carried us more than you know and impacted our lives greatly with your prayers! We love you all so much and still plan on celebrating together when Mack's immune system is ready! Not much else going on here, Mack's next appt in Cincinnati is on May 30th. I'll keep you posted.
Much love,
Amy
Monday, May 5, 2008 4:25 PM CDT
Finally got Mack's labs... her Igg level was good enough to hold next month's infusion and see how she does. That's exciting, but a little scary for us too because it was when her doctor took her off the IVIG last time that she relapsed. May just be coincidental, but it's engrained in our minds forever! Her stim test showed that her body is capable of responding to stress and producing steroids so we will continue to wean her off the hydrocortisone over the next ten months. It's a very slow process but we're happy to be heading in the right direction! Her immune studies were inconclusive because they had some problem with the machine. Bummer! We know that she had more lymph population than before, but we don't know how well the cells are working. They will repeat the test next month. We're excited for our first visit to clinic with Dr. Mike. I can't believe all she goes in for is a blood draw and an exam. That's amazing! She continues to feel great and is growing like crazy. She's still swollen from the steroids, that will probably stay with her for quite awhile.
My job continues to challenge me in so many different ways, I love it! Everyday is something new, and that fits my personality perfectly! I have so many stories as these kids have captivated my heart. Steve thinks I'm crazy, but I actually don't want the school year to end. It will be an adjustment not seeing the students for three months!
Everyone else is doing well. I'm not feeling great, but its hard to take care of myself when I have to take care of everyone else. Fighting some virus for a couple weeks now and I just can't kick it.
Please continue to pray for healing of Mack's brain... that she could retain and retrieve info and close the developmental gap. She's so excited for kindergarten! Thanks again for your amazing support for our family. We love you all more than you know!
Amy
Saturday, April 26, 2008 11:50 AM CDT
PLEASE HELP SUPPORT ERIC... WE'D LOVE TO SEE YOU THERE!!!!!
Another whirlwind trip to Cincinnati and back! Mack had a fabulous check up and got to see many of her friends at the hospital. Her music therapist spent time with her and she loved every minute of it! Her child life friends came to play and she was so excited to see everyone. Her BMT doctors are thrilled with her progress and have made the decision to release her care back to the oncology team. Dr. Mike stopped by and said seeing Mack was the highlight of his day! He also said she is a good reminder to the team to never give up hope. We hadn't seen Mike much on the other side of this valley, so our visit was very rewarding for everyone. We will still make monthly trips to Cinci for at least another year and then it will move to every other month. Mack's CBC and chemistries looked great, but we are waiting on the results of her immune studies, Igg level and some stim test to see if her body is producing its own natural steriods yet. We should have those results at the end of next week. If her Igg level is good, they will consider stopping the monthly IVIG and following her Igg levels to see what she does. If it's not stellar, she'll stay on the IVIG for another year. We are amazed at the work of God's hand, grateful for His love and provision, and eternally thankful for all He has done in our lives!!!
Much love,
Amy
Sunday, April 20, 2008 8:25 AM CDT
I know it has been entirely too long since I've posted an entry, but no news from us is always good news. Mackenzie has been doing well and is growing up so fast now. I can hardly believe how fast the days are going after our lives stood still for so long. We are heading to Cinci this week as Mack's appointment is on Friday. She continues to get an infusion of IVIG monthly which will most likely continue through next spring. She also has her labs checked monthly and we will begin weaning her off the steroids over the next 10-11 months even though she is currently on such a low dose. I'm not sure if they will check her immune system at this visit or wait until next month which will mark the 1 year birthday of her new cells. This will also begin the process of testing and watching for all the late effects of the chemo/radiation and transplant. She will be monitored annually by multiple specialists and continually followed at Cincinnati Childrens into her adult years.
My job has been going great, I love going to work and thoroughly enjoy working with the high school students. They've all stolen my heart, which can be draining but well worth it to make a positive impact on someones life! I often think I could run a reality show out of my office as it can be quite entertaining too. I am so thankful for God's plan and pray He will continue to use me in ways I would have never expected.
Lindsay had a break through arrythmia last week, but converted on her own. I haven't even called the cardiologist as it was an isolated event and she's doing well. Her next big work up/evaluation will be in July or August.
"Thank you" always seems so inadequated but I have to express our gratitude for your commitment and care for our family. We are so grateful that you continue to check in on us and hold us up in prayer.
Much love,
Amy
Friday, March 28, 2008 10:39 AM CDT
Hello from Memphis... we've been thoroughly enjoying our time away and Mack has been loving every minute of playing outside. I finally posted some new pictures in the photo album from this week. Her check up on Monday went well. White blood cell count was down from our last visit, but she's been fighting a little cold and her immune system is still learning as it remains fragile. We've begun to wean her steroids which will be a long process since she's been on them for so long. At our next visit, we will re-evaluate the frequency of her visits and the need for continued monthly IVIG. Sounds like they may try her off of it this summer or just keep her on it for another year and take her off next summer. Hard to rock the boat when she's doing so well. Praying for wisdom and guidance in all decisions regarding Mack's medical care.
We're heading back to Chicago tomorrow and hoping to bring spring with us! Please pray for our friend Amanda who had a transplant at St. Judes this past fall and is currently in ICU on the ventilator. Specific prayers for healing of her lungs. For more updates, visit her webpage at www.caringbridge.org/visit/amandajones Thanks for your amazing support and love for our family and friends who endure tough times.
Much love,
Amy
Friday, March 14, 2008 6:28 PM CDT
THANK YOU LAKE FOREST HIGH SCHOOL!!! (If you are an employee at LFHS, could you please copy this letter and email it to the entire staff for me. Thank you!)
Dear Friends at LFHS-
It is with great emotion, many tears and an overwhelming heart full of gratitude that I am writing to you today. I fall to my knees as I am humbled by the overwhelming measure of love and support you all have extended to our family during the last four years. Unless you are faced with a crisis beyond what you think you can humanly handle, you may never fully understand the offering you have given us. To suddenly and abruptly drop everything in your life, only to spend every waking moment, every breath, every ounce of energy you have, fighting for the life of your child is something we could not have done alone. Thank you so much for your understanding in allowing Steve to spend as much time in Cincinnati as he did and for the many flights you enabled him to travel by. Thank you so much for the “value” that you place on family and the way you take care of your employees and coworkers. Thank you so much for being there for Steve when we physically couldn’t. Thank you so much for every kind word, every bit of encouragement, every letter, every package, every post on the website, and every phone call. Imagine sitting in a hospital room day in and day out for over six months not knowing the fate of your child. You will then begin to see how incredibly valuable your gifts of encouragement have been, much more than I’m sure you are aware of! Every single day that I wake up and I see my daughters smiling face I am reminded first and foremost of the grace of God and the fragility of life, and secondly, of the importance of “doing life together”. You have blessed our family beyond measure in so many different ways, and we simply couldn’t have made it without all of you! Thank you so much for all the fundraising efforts and the enormous amount of financial support you have provided us with. There are no words big enough to express how thankful we are for your generosity. We have seen so many families destroyed by the financial strain and relationships ruined by the emotional stress and yet we remain intact. We credit all of you for carrying us through these difficult times. My eyes swell with tears as I marvel at your willingness to help us in such extreme ways. I wish there was some way I could tangibly express our thankful hearts, so you could see and understand how much you all mean to us. The impact of your generosity has preserved so many things for our family… things that would have been torn away from us, and that is a gift we could never repay. So, I ask you all to accept my most sincere gratitude as I say “thank you” to the Lake Forest community for believing in a vision that goes beyond the workplace, believing in the value of friendship and family, and for rallying around a family in need to carry them to victory! Praise the Lord for the healing that has been done in the life of Mackenzie Lee Johnson, may her journey be a gift that touches and impacts your life in unexpected ways and blesses you richly in the years to come. God bless you all!
With much love,
Steve, Amy and family
Saturday, March 8, 2008 6:12 AM CST
I've been trying to get to the computer to write an entry all week and here it is Saturday already. Just wanted to let you know that I am enjoying the new job. I've been working hard making changes to regain organization and structure in the nurses office. The days have gone by so fast and I really enjoy the staff and the students.
Mackenzie LOVES going to "Grandma Sue's" on Tuesdays and Thursdays while Regina is in class. She hasn't had any problems adjusting and is thriving with the changes. Another step which shows us she is sooooo ready for kindergarten in the fall. Steve and I went over to the elementary school this week to register her and it was such a profound milestone for us. We feel amazing blessed and grateful for the gift of her life. It was nearly a year ago to date that the doctors told us there was nothing more they could do for Mack with a cure as their goal and they would turn their efforts toward comfort measures and prolonging life. We praise God everyday for making ALL things possible and for giving us the wisdom, guidance and courage to keep advocating for her!!! And we give God all the glory and honor for His divine plan for Mack's life, that even doctors don't understand! I will try to post new pictures in the next day or so. Her hair is growing in completely wild, beginning to curl again, sticking up in all directions but we all love it! She continues to feel great and is doing well with all her teachers/therapists that see her on a weekly basis in our home. Her next appointment in Cincinnati is March 24th and being spring break, our whole family will travel continuing on to visit some friends in Memphis for the week.
Thats about all thats going on here. Still in awe of how God worked out the details so quickly in providing the perfect job for me with the perfect benefits to provide Mack with health insurance again after capping out her lifetime max on Steve's policy. He is so amazingly good!!! Please continue to pray for protection over Mack's brain and heart from late effects of all the chemo, radiation and treatment she has endured over the last four years. And continued prayers for her new cells to mature and learn all the things they need to do in order to keep Mackenzie safe. Still asking God to filter all her cells through His hands and regulate each and every cell in her body.
Thank you so much for always checking in on us, continuing to pray for our family and just for being a part of our lives. Love you all so much!
Amy
PS We are thinking ahead to the next school year and looking to hire someone M-F 7:00am until 11:30 or 12:00pm on a school calendar to care for Mack and get her on the bus for school. If anyone knows of someone who would be interested, PLEASE email us at hopeformackenzie@yahoo.com. In the meantime, we'll be praying for the right person and trusting our faithful God to provide!
Friday, February 29, 2008 8:07 AM CST
It has been a whirl wind several weeks. Mack is doing great... her immune studies continue to improve and we are all thrilled with her progress. It will be one year since her transplant, in May and so its time to start getting baseline studies and monitoring for the late effects of all the therapy she has received with chemo and radiation. We are specifically praying for protection over her brain and heart as these drugs can cause late complications with learning delays and heart damage. Our next visit to Cinci will be the end of March.
I signed as the school nurse at a nearby high school and will start work on Tuesday. God has been abundantly good in his provision and has worked out all the details with babysitting for Mack. The insurance will be effective the day I start, so as of Tuesday, Mack will be insured again!!!!! Amazingly, I'm really looking forward to work... the job description seems to be a perfect fit for my personality and my skills. I stand in awe of God. Even when I was signing the contract, the associate superintendant said, "this is very strange for us to be hiring this time of year" and "we've had several candidates in here that just didn't work out"... all I could think was... when God's in it... its out of our control. I believe the words He gave me when He said, "I've held this job for you". Thank you all for praying for a job, good insurance and babysitting details. This is a direct answer to your prayers!
Not much else for now. Mack has become a Cincinnati Childrens Champion and we will be doing a lot of PR for the hospital. Looking forward to giving back for ALL they have done for us! We are eternally grateful!
Much love to you all,
Amy
Saturday, February 23, 2008 7:46 AM CST
Hey guys... our trip to Cinci went great (as far as Mack's labs and check up), but the weather was BRUTAL. We actually had to stay a night in Indianapolis on our way home because the ice and snow storm made for treacherous roads! But, we made it and we are praising God for Mack's best labs EVER! Waiting to hear the results of her immune studies sometime this week.
I finally heard back from the high school on my job and I'm going in on Wednesday afternoon to look at the details of the health insurance and benefits. I also another interview at a nearby school on Wednesday morning, so please continue to pray for Gods guidance and direction in showing me what job would be best for our family.
Everyone else is hanging tough. I have friends visiting from out of town and we have a lot of fun stuff planned for the next few days. Its amazing to be doing "normal" things again. Please continue to pray for Mack... for protection during this wretched cold/flu season, continued protection of her bone marrow and healthy cells that develop to provide her with an incredible immune system!
Love you all,
Amy
Tuesday, February 12, 2008 7:11 AM CST
When God's hand is clearly in a specific situation, there is absolutely no denying it. The house we have been renting in Cincinnati sold and the new owners are closing on it in May which means we need to find a new residence, or get Mack insurance and give up our Ohio residency. I had been paralyzed in looking for job to get Mack insurance and just unsure of what God wanted me to do. I had been brainstorming ideas, but was failing on my own. I began really commiting the situation to prayer and calling on God to open doors and lead me in the direction that He knew was best for our family. Last week, I applied online for several positions, all in the school setting. The day after applying, I got a phone call to interview at a nearby high school for the school nurse position. I wasn't very excited about the opportunity at first, thinking I wanted to get away from nursing. And then I heard the Lord speak to me. "I've held this job for you". I started having a total change of heart and by the time I interview yesterday, found myself excited about this job. I was offered the position during my interview and continue to pray for God to work out the details, which I trust He will. I meet with human resources next week to go over the insurance, which is the most important component to this job. Please pray for good insurance benefits that would work for our situation. Also, we will need to find someone to watch Mackenzie on Tues and Thursday mornings from 8:30-12:30 (while Regina is at school) so if anyone knows of someone who would be available during those times and looking to earn a little money, PLEASE email us at hopeformackenzie@yahoo.com. Again, trusting Him to provide for even the smallest details.
Mack continues to feel good and we have been enjoying this calm. I'm amazed at how healing it has been for our family and pray that this season of our life would be long-lasting. Returning to Cincinnati a week from today (next Tuesday) and ask that you continue to pray for healthy bone marrow and the production of healthy cells for Mackenzie.
Thanks again, for your relentless prayers for our family. It is the power of prayer that has and will continue to carry us!
Much love,
Amy
Friday, February 1, 2008 7:19 AM CST
I know it has been entirely too long since my last entry and I apologize for slacking off. It was a crazy two weeks, and I don't know where the days went. Our trip to Cincinnati was long. Mack got her first IV since getting her central line out and she was so brave. I've never been more proud... she held still like a statue with barely a whimper, despite being so afraid and those big tears rolling down her cheeks... it broke my heart. Sometimes the little things are harder to deal with than the bigger things. Her veins are tough to hit because she's still swollen from the steroids and they are fragile from all the therapy she's had. First attempt went right in, but the vein blew as soon as they flushed. Second time was a charm! Thank you Jesus! We had a little scare with some "atypical lymph" cells seen on Macks CBC. These cells can be normal when you're fighting a virus, but Mack was asymptomatic and any abnomal cell in a child with Mack's history will send everyone into a tailspin. They drew several more labs for testing and had two pathologist review her slides. Praising God for the good results... both pathologist agreed they were not leukemic cells and all the follow up labs were good. Her engraftment is 100 percent donor cells which is the best gift we could ever receive. Those moments of "unknown" took five years off my life. I realize now that I went looking to the doctors again for some reassurance instead of running into the arms of my Lord. Why on earth would their "guess" or "prediction" give me any sense of peace? I guess because as humans we desperately want something tangible and we hate the unknown. Once I fell to my knees, and grabbed onto my Rock, my Strength, my Refuge I found peace again and surrendered to His plan. I realized nothing I could do would change the outcome of what was going to unfold, but holding on to Christ would surely sustain me. And listening to the words He gave me... "The Healing is Done", was an opportunity for me to exercise my trust in Him. Once again, I'm ashamed to admit that after 13 years of faithfulness to our family, my knee jerk reaction was to run to "man" for reassurance instead of running into the arms of my Father who knows ALL and is more invested in our lives than any doctor. I guess its a life long process of growing and changing, but His love for us will never waiver as He waits patiently for us to finally "get it"! On my knees praising Him today for continuing to protect Mackenzie and asking Him to help me change my human ways... I long to more like Him!
Not much else happening around here other than us all enjoying more and more normalcy to our lives. Next trip to Cincinnati will be at the end of February. I'm continuing to investigate ways to get Mack insurance so we can give up our Ohio residency and alleviate some of those extra costs. Please continue to pray for God's guidance in this area. Haven't heard anything from Make a Wish yet, so I'm assuming a spring break trip will not work out, but that may be best since Mack's immune system is still weak and flying could be a threat. Just leaving it all in an open hand.
Just wanted to thank you all again for keeping up with us. We are so glad to have you all in our lives and couldn't imagine life without you!
Much love,
Amy
Monday, January 21, 2008 9:10 PM CST
****Heading to Cinci, back late Fri for Mack's book signing at 2pm on Sat. More then.
Borders Books and Music # 144
1700 Maple Avenue
Evanston, IL 60201
847-733-8852
*************
Great Weekend!
Just a quick update to let you know we had a great time at Mack's book signings this weekend. Mack did an awesome job, but it all may have gone to her head... just a little. We were driving to the bookstore and I was lost as usual. We were in a hurry and I was "talking" to the other cars when I hear Mack in the back seat saying, "yeah, don't day know 'dares someone famous in dis car!" It was so funny. Jim, Gina and Debra were wonderful. We had such a great time together. Jim is absoultely hysterical and super fun to be around. Gina is a doll and we love her! They made Mack feel extra special and she adores them all. Mack did great with her Q&A and interviews and last night when we were putting her to bed she whispered, "mom, dat made me feel good". She always melts my heart. She has one more signing scheduled next weekend, but there is talk of more in the future between now and May. And YES they are trying to coordinate one with Ace, it will most likely be sometime in April and the location is yet to be determined. I will let you know when we have details. I will pictures in her photo album soon.
On the medical front, Mack continues to feel great. We are headed to Cinci on Wed and returning on Friday. Praying for another good, quick visit! Lindsay has been home sick with a 102.4 fever, but amazingly her heart has been steady. Praying she bounces back quickly. Thanks again for your incredible love and support. It was a year ago this past weekend that we were headed to Cincinnati with a very uncertain future for our little girl. You guys have been such a strong support and source of strength and encouragement for us, we could not have made it in as good of shape without you all! Thank you for holding our family in prayer!
Much love,
Amy
Tuesday, January 15, 2008 8:59 AM CST
****Added some new pics in the photo album of Mack geared up for her book signing today, tomorrow and next Sat. If you live in the area, we'd really LOVE to see you. Come on out and support Mack! It will be super fun. Jim and Gina will be singing a few songs, there will be a question and answer time followed by the actual book signing. Hope to see ya there!*******
We continue to enjoy this period of "calm" as we are beginning to see glimpses of "normalcy" to our life once again. Mackenzie has been feeling well and thriving despite feeling a little "cooped up" as she's confined to home. She is however looking forward to getting out this weekend as she attends two book signings for the Chicken Soup book. There was a great article about Ace and Mack in today's paper for anyone interested you can view it online here IDOL LIGHTS UP LITTLE GIRLS LIFE
We'd love to see you in the stores if you can make it. She will be at Barnes and Noble in Chicago this Saturday the 19th at 3pm. Here's the info about the Borders signings. Thanks again for all your love and support!
For Immediate Release
Chicago, Ill., Monday, Jan. 7, 2008
American Idol Top Ten Finalists Gina Glocksen & Jim Verraros; Evanston Author Debra Poneman;
and 6-year old contributor Mackenzie Johnson To Discuss and sign new “Chicken Soup” book
At Borders® stores in Naperville and Evanston; Informal Acoustic performance
Who: American Idol Top Ten Finalists: Naperville’s hometown girl Gina Glocksen and Chicago’s own Jim Verraros; plus Evanston author Debra Poneman; and 6-year old leukemia survivor and contributor Mackenzie Johnson
What: Gina, Jim, Debra, and Mackenzie will discuss and sign copies of “Chicken Soup for the American Idol Soul: Stories from the Idols and their Fans That Open Your Heart and Make Your Soul Sing.” Gina and Jim will also sing a few lines from their favorite songs.
When/Where: Sunday, January 20, at 2:00 pm Saturday, January 26, at 2:00 pm
Borders Books & Music Borders Books & Music
336 S. Route 59 1700 Maple Ave.
Naperville, IL Evanston , IL
630.637.9700 847.733.8852
Why: The wait is over! Not only can Idol fans enjoy the eagerly-anticipated new “American Idol” season (debuting January 15 and 16) but also meet past Idol favorites in person at two Borders’ locations. Naperville ’s hometown girl Gina Glocksen and Chicago rocker Jim Verraros will join Evanston co-author Debra Poneman and 6-year old leukemia survivor and contributor Mackenzie Johnson to discuss and sign copies of the new book, “Chicken Soup for the American Idol Soul.” Although there have been over 300,000 contestants in the history of American Idol, Jim and Gina are two of only 60 Top 10 finalists.
For the first time ever, the #1 show in television history and the #1 non-fiction book series in publishing history have come together to bring you “Chicken Soup for the American Idol Soul”--both dedicated to celebrating the triumph of spirit over adversity, the fulfillment of dreams coming true, and the power of love. The book contains stories from Carrie Underwood, Clay Aiken, Jordin Sparks, Ruben Studdard, Melinda Doolittle, Blake Lewis, Sanjaya Malakar, and many other top Idols from every season. This is truly the stuff that dreams are made of--and why almost 60 million people faithfully tune in week after week, year after year.
Debra Poneman has been a die-hard American Idol fan from Season 1 and says that Chicken Soup for the American Idol Soul is proof positive that what she has taught in her success seminars over the last twenty-five years really works: what we put our attention on will manifest in our lives in perfect timing. Many years ago, she set the goal to write a best-selling book that would transform people’s lives while working with people she loves. Her goal became a reality when she had the opportunity to co-author this powerfully transformational book and spend her days talking and writing with the Idols.
Additional
Information: Customers may take photos with the Idols, but no memorabilia will be signed.
Saturday, January 12, 2008 8:09 PM CST
"Thank You Lord, for making all things new again. May we never forget the suffering and Your grace that has saved us. We are nothing without you."
Wednesday, January 9, 2008 7:47 AM CST
WOW! It was a long day yesterday as we didn't get home until late last night, but we are home! Lindsay was so brave, although she was scared, she never complained. She never cried, or begged not to go, she was just resolved with the fact that this was something that needed to be done. The test ran about three hours, just as they had told us it would. A nurse came out every hour to give us updates on how she was doing and she tolerated the procedure well. Dr. Javois came to talk to us when he was done and he was thrilled with his findings. I think he started with "I have all good news for you". Lindsays pulmonary arteries look great and the vessels in her lungs are well developed (Praise God!). The pressures in her lungs are within the realm of normal, on the high end of normal, but these numbers were much lower than they had anticipated (Praise God!). Her heart function is excellent and even more important is that the ventricles are relaxing to a very low pressure after they pump which was also an awesome "surprise" finding (Praise God!) Her left ventricle which was enlarged on echo last month is now the same size as the right (Praise God!) Her valves are functioning great without really any regurgitation thats worth noting (Praise God!). And her homograph (the artificial connection between her heart and her lungs) is wide open compared to what they were expecting to find. She does have some compression of this homograph because of her growth, but nothing within the vessel and the compression is only causing about a 20 percent occlusion (Praise God!). The two baffles that they placed within her heart were still flowing nicely without any occlusions (Praise God!) AND her heart rhythm was rock steady (Praise God!) After Dr. Javois finished with all of that he said, "So, I think were good." I asked, "No surgery until May or June?" And he replied, "No, I think she's good for several years!!!!" UNBELIEVEABLE! We were shocked, totally not expecting that response. That was not even an option on the table going into the cardiac cath. His last words were "If its not broke, don't fix it"! Words cannot express our gratitude as God's mercy and grace washes over us once again. "Thank you Lord, for never leaving us. Your love for us is beyond our human comprehension and your faithfulness has carried us through the last twelve years. We praise you and thank you for all you have done in our lives and in the lives of our five girls. Thank you for your mercy and grace, thank you for watching over Lindsay's heart and protecting its function. Thank you for monitoring her heart rhythm and keeping it steady. Thank you for giving us the gift of time, time to rest and time to heal before going into battle once again. Thank you for continuing to provide for our every need. And thank you for blessing us by surrounding us with so many wonderful people. We love you so much Father, and we praise you in the storm and we praise you in the calm. Continue to hold our family in the palm of your hand and bond us together in all the years ahead. Continue to watch over and protect Mack and Linds. Keep us safe and bless us richly with good health. In Your Son's holy and precious name I pray, Amen."
Not much else for now. Basking in the moment and resting in the reprieve.
Love you all,
Amy
Monday, January 7, 2008 8:01 PM CST
It was an action packed week in MN as we hit the water park, Mall of America, tubing hill, ice skating, sledding, four wheelin' and hangin out with family. We all wished Mack could have been there! Steve enjoyed the "peace and quiet" of home when he wasn't at basketball practice and Mack spent time with Elise, one of her favorite sitters from LFHS. Thank you Elise, for continuing to serve our family and for entertaining Mackenzie and making her feel special all week! We love you!
Mackenzie continues to feel well and seems to be getting stronger and LOUDER and SILLIER! Here's proof:
undefined In Your Face
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We are gearing up for her book signings this month and heading back to Cinci on the 24th. She loves every minute of life without tubes... swimming in the tub is a novelty!
Switching gears... tomorrow we are heading back to the hospital for Lindsay's big cardiac catheterization procedure. Please pray for protection over Linds and guidance and wisdom for Dr. Javois. Asking God to send angels to hover over the room and stand guard around Lindsay. Her test is scheduled for 10am, but she is the second case so it may be later. I'm not sure how long it will be. Last time, they said 3-4 hours and it was closer to 8 or 10. She may or may not have to spend the night, we won't know until tomorrow. We should have some results tomorrow, but won't know the bigger plan until after they present her case at a conference of many doctors who consult together to come up with the best plan for these complex cases. I will try to update tomorrow night. Thank you all so much for being a part of our family, for continuing to stand with us, for your relentless support and your powerful prayers! We love you all so much!
With love and gratitude,
Amy
PS If you haven't seen the movie The Ultimate Gift... go rent it asap! So, so awesome! A must see for everyone!
Sunday, December 30, 2007 11:30 AM CST
For the first time in four years, Mack has NO tubes of some sort hanging from her body! Surgery on Friday went well, and the central line came out without difficulties. Praising God for His constant care. We had a good trip to Cinci, but have been suffering along side our friends who are overwhelmed with grief and loss. Our sweet friend Boey passed away on Friday and it has been another difficult loss for our family. Mackenzie has been processing some very deep thoughts abouth death and dying, especially for a five year old. These children who endure such difficult trials are like none other. They all have a special spirit about them and a deeper understanding of life than most adults. Trying to understand that we are not sad for Boey because she is experiencing amazing things that we cant understand on this side of heaven, but we are sad for her family who feels the immense void and loss of her life. This opened a discussion with the girls about heaven and I asked them what they thought Boey could be doing right now. Mack answered very seriously, "She's loving her hair". Please pray for the Byers family that God would wrap His arms around them and overwhelm them with peace and comfort.
The girls and I are heading up to Minnesota to visit with Steve's family for the week while Steve stays home with Mack. We received the results of Mack's first "immune studies" and her cells are still VERY immature. She basically has no immune system which makes her very vulnerable and susceptible to every germ and environmental threat to her body. Please continue to pray for a shield of protection around Mackenzie. Our next trip to Cinci is at the end of January as her visits have moved to once a month.
Wishing you all a Happy New Year and praying that we can all appreciate every moment of life as a gift!
Much love,
Amy
PS Thank you to everyone who has sent our family gifts this holiday season. We were, once again, overwhelmed by your love and support. Our hearts are filled with gratitude for your willingness to help make our holiday extra special. I post pictures soon.
Thursday, December 27, 2007 8:26 AM CST
Getting ready to head out the door to Cincinnati. Mack will be in Day Hospital in the morning for IVIG and then is scheduled in the OR at 1:15 to have her line removed. Please pray for safe travels and protection over Mackenzie. Specifically praying that God would dissolve any clots or sheaths near the line and that it would be an easy removal. Continuing to pray for a shield of protection around Mackenzie from all threats to her immune system as it recovers. And praising Him for the miracle He did in Mack's life and the time we have with all of our girls.
We had a Christmas to remember filled with many great memories and cherished moments. But our hearts remain heavy for all of our friends who are suffering. Thanking God for the peace we gain in Him and the grace He offers in His perfect plan for our lives. We rest in that.
If I have the opportunity to write an update from the hospital on Friday, I will. Otherwise, I'll write on Sat/Sun when we return home. Thanks again for your continued support and prayers for Mackenzie and our family. It means the world to us!
Much love,
Amy
Monday, December 24, 2007 10:41 AM CST
Thursday, December 20, 2007 7:26 AM CST
It is with a very heavy heart that I write this morning after learning news that our dear friend Ali passed away overnight (www.caringbridge.org/visit/awesomeali). This is a very difficult loss for all of us and our hearts bleed with sorrow for the Aardema family. Mack has been crying, "I didn't even get to say goodbye", she said as she ran to get the flipflops Ali made for her and is wearing them as I write.
It seems that we are surrounded by so much sorrow and suffering these days as many of our friends are hospitalized and stuggling to hang on to life. I don't know how to process the joy and celebration of Christmas along with all the sadness and pain our friends are enduring. How do you experience two completely opposite emotions at the same time? One of my very close friends lost her 23 year old cousin this week to a senseless drunk driving accident. She was out with some friends and had been drinking. She did the responsible thing and asked her friend to drive home. On their way home a 28 year old intoxicated girl was driving in the wrong lane causing a head on collision. Everyone walked away from the accident except my friends cousin who was killed. Paramedics arrived and presumed she was dead and pulled the drape over her. Hours later when the coroner arrived to retrieve her body, he found her still alive. She was rushed to the hospital and immediately taken into surgery. She was on the ventilator in ICU overnight when they pronounced her dead the next day after determining she had no brain activity. They were able to donate all of her organs, and its amazing to think that others will survive and families will be filled with gratitude and joy through this family's tradgedy. While they sat grieving and crying in a hospital waiting room, a hush of silence would fall over them and the music overhead was playing "Its the most wonderful time of the year". Its like trying to mesh two opposite worlds simultaneously. And when your world comes to an abrupt halt, the rest of the world continues on. My friend was at the mall last night shopping for a dress to bury her cousin in while most others were in a frenzy shopping for Christmas presents. Their families were supposed to be together on Saturday to celebrate Christmas... now they will be together to bury their loved one. There is so much suffering in this world and yet so many others walk around oblivious to it all. And those of us who have had the honor to suffer, because I see it as an honor (even though I don't like to suffer), God intimately reveals Himself to you in your brokeness in ways we would never have known Him without the suffering. Therefore we will NEVER forget those who are suffering EVEN during "the most wonderful time of the year". Our lives are enriched by that suffering and priorities change in direct correlation to it. We begin to live our lives more intentionally and with greater pupose because of the suffering and hopefully we draw close to the Lord and allow Him to shape and mold us during this time. In this "brokeness" we are more pliable and receptive to His ways. And we trust His ways are perfect, bringing us peace and acceptance even when they are not the ways we would have chosen.
So we celebrate the birth of a Savior, one who came with a plan and a purpose that involved suffering. THIS IS THE REASON FOR THE SEASON. He came to redeem us from this broken world. He fully understands every ounce of human pain, every emotion of sorrow and saddness and every reason for suffering. He brings ALL things together for good and we keep our eyes fixed on Him and cling to His promise to never leave our side... to faithfully provide and help us through the valley's of life.
Things here are stable. Just got back from Cincinnati late last night. Mack had her Day Hospital appointment and I had a follow up with my surgeon. We also got moved out of our apartment and into a house that we will be renting in Cincinnati (another amazing provision of Gods that I will share with you in my next entry). Mackenzie's counts were good, but her central line has been "finicky" and its been difficult to draw blood from. Because of her long history of fibrin sheaths and blood clots, we all decided it was best to just get the line out. We return to Day Hospital next Friday the 28th for IVIG in the morning and then Mack will have her line removed in the afternoon. Please pray for angels to hover in the O.R. and for God to guide the surgeons hand. Praying for any clots to dissolve and for protection over Mackenzie before, during and after the procedure. Praising Him every day for Mack's life and all of our lives knowing and resting in the knowledge, that man cannot add a day or take a day away from any of our lives. He knows exactly how many breaths each of us will take here on this earth. He has a plan and it is perfect. In our sorrow, we continue to praise Him for ALL He has done for our family and trust Him to tenderly care for us in our fragility. He is good, He is always good.
Lindsay is still scheduled for her cardiac catheterization on January 8th, please continue to pray for wisdom for her doctors and skill to place the catheter into Lindsays heart obtaining all the information they need to make the best decisions for Linds. Laying all of our girls down at the foot of the cross. He is able!
Thank you so much for loving us, for helping us, for supporting us, for praying for us and for caring enough to make a difference in our lives! You all have been the biggest blessing to our family and we are so thankful to have you a part of it! We've learned so much from you guys and we hope we can take those experiences and use them to serve others one day.
With much, much love and gratitude,
Amy
Sunday, December 9, 2007 6:22 PM CST
****Friday Dec 14 1pm update****
Since its no secret that I love Nick Lachey, I just wanted to let you all know that he will be on NBC's Reality show Clash of the Choirs starting Monday eve the 17th. He handpicked a choir from Cincinnati, Ohio. One of the ladies in the choir is a mother of an oncology patient at Cincinnati Childrens. CINCINNATI CHILDRENS HOSPITAL will be featured on the show and if their team wins... all proceeds will be DONATED to the hospital! GO TEAM CINCINNATI! Ok, I've totally given my heart to Cincinnati. If you watch, take the time to vote and help make Mack's hospital an even better place than it already is!!!
I can't even begin to express how grateful we are to be home, together, celebrating this holiday season! Every time Mack comes running around the corner or I see her coming down the stairs I am so awe-struck by the miracle of her life. The best way I can describe it, is like seeing a birth. I've seen hundreds of babies born in my nursing career and every delivery I had the honor of attending, I was struck by the miracle of life. It didn't matter how many times I had seen a baby being born... it NEVER was just an "ordinary event". It never got old or lost the "wow factor". I was witnessing the miracle of life! I have that same feeling when I see Mackenzie and I pray that it will never get old... that I will always remember the incredible gift that God gave us and give thanks!
Mack continues to feel great. Her biggest complaint is not getting out enough. Her social calendar outside her four sisters is lacking and she'll be the first to let you know it. She wants "play dates", she wants to go to dance class, among many other places, and she is counting the days until she rides the bus to kindergarten. Looking forward to spring and summer when her immune system is stronger and she can get out more! We'll be in Cincinnati two more times before the end of the month. Continued prayers for healthy bone marrow and protection over Mack and our whole family!
Loving you all, and praising God for bringing you into our lives,
Amy
Tuesday, December 4, 2007 9:42 PM CST
Mack was crying tonight before bed. I asked, "why you cryin' Mack?" She said, "cuz I'm sad dat all my fwiends are sick". Through her tears she continued, "now I not gonna be able to have a pway date." Trying to console her I explained that I understood why she was sad... its hard to see people we love feeling so lousy. I tried to lift her spirits by focusing on how thankful we are that her leukemia is gone. I asked her if she knew that there was a time when we didn't know if she would live or not. She shook her head, "yes". "I thank God everyday, Mack, that He healed you and you're still here with us." She wrapped her arms around my neck and whispered, "me too". As long as I live, I will never forget the next moment. From a long pause of silence, she looked up at me with a huge crocodile tear falling from each eye, and a stare that could pierce the soul. "Just wanna ask God, why I got cancer". Holding her even tighter, I said, "He knows why Mack. And someday, He'll tell you too."
Sunday, December 2, 2007 8:08 AM CST
***********Tuesday December 4, 2007 12pm UPDATE***********
Hey guys!
I know many of you have been inquiring about the book signings Mackenzie will be attending. I'm sorry it has taken me so long to get information to you. There are still dates in the works, but this is what I have so far...
FYI... to my knowledge, Ace will not be attending the signings. If you have further questions, please contact him. Mackenzie will be signing with several other idols from various seasons.
Saturday Jan. 12 Borders Bohemia, NY (tenatively pending health)
Saturday Jan 19th Barnes and Noble Chicago, IL
Sunday Jan 20th Borders Naperville, IL
Saturday Jan 26th Borders Evanston, IL
Looking forward to seeing you there and finally meeting! After all we've been through this past year, we've become like family. Thanks again for all your love and support. Mack's working hard on learning to write her name before January!!
Much love,
Amy
***************************************
Mack had a great visit to Day Hospital on Friday. Her doctors were thrilled with her "slow and steady" progress. She started an antibiotic for a possible sinus infection, as she's had a cold for the last several weeks. Her counts were a record high. Her white blood cell count was 6.3, havent seen a number like that in over FOUR YEARS!!!! Her platelets were up to 92 and her ANC was 4540! EVERYDAY is Thanksgiving Day in our home, EVERYDAY my wells with gratitude and EVERYDAY I praise the Lord for His unwaivering faithfulness that has carried us through the last twelve years. He is so good! Steve and I were reading some old journal entries, reflecting back on where we were last Jan-April. The miracle is so profound and He has given us so much more than we could ever imagine!
Mack will continue her every other week visits through the end of December. If her Igg levels and the rest of her counts are still looking good, then her visits will move to every three weeks. Thats awesome!
Lindsay had her stress test last Thursday and she did great. She was only able to endure eleven minutes on the treadmill, but her heart was rock steady. Her 48 hour holter monitor also showed solid heart rhythms and her electrophysiologist was thrilled. Her cardiac cath is still scheduled for Jan. 8th and that will determine the timing of her next surgery. Please continue to pray for protection of her heart, especially during the cath procedure, and for God's powerful hand to open up the homograph so no further surgery would be needed at this time! We've seen the impossible made possible through His divine intervention and answered prayers! We continue to place our lives in His hands.
Thanks again for ALL the things you guys continue to do for our family. You have no idea how thankful we are for each of you. Your support has eased our burdens more than words could express and we consider each of you a rich blessing in our lives. Praying for a year of health in 2008. Much love, Amy
Monday, November 26, 2007 8:49 PM CST
I think every day from here on out will be Thanksgiving Day in our home! We had a wonderful time at the cabin, although we were thinking of Ali the entire time. Many of you know our dear friend and have prayed for her in the past. She needs our prayers again as she's fighting hard in ICU. Please pray for healing and wisdom for her doctors. For more updates, visit her webpage at:
www.caringbridge.org/visit/awesomeali
Lindsay has her stress test this Thursday morning and then Mack and I will be heading back to Cincinnati for her infusion of IVIG on Friday. I can't believe how fast those two weeks went by. She continues to feel good and is trying hard to keep up with all her sisters. They ADORE her! It has been such a blessing to see them include her in everything they do! I never want to lose this appreciation for life! So grateful for all the "normal" things we do everyday, but take for granted. Please continue to pray for protection over Mackenzie and Lindsay. We continue to praise Him for His mercy and grace!
More when we return from Cinci. Much love, Amy
Tuesday, November 20, 2007 7:50 PM CST
Wow, I can't believe its been a week since my last entry... I have no idea where that time went. Got back from Cinci late last night. The doctors are thrilled with Mack's progress. She's been fighting a little cold, but holding her own. Her counts were great and she remains on minimal medications. There really wasn't any room to make changes, but thats a good thing at this point. We'll continue on our every other Friday schedule. Praise God! We had Mack's annual IEP meeting for school today and we feel incredibly blessed by the services they continue to provide for Mackenzie. Her teachers will continue working with her in our home this year and through the summer. Next year she will attend kindergarten in an integrated kindergarten classroom at the public school where she will be able to receive additional help for her retrieval problems. Even though she is testing age appropriate, they recognize the memory problem caused by the chemo in her brain and the radiation and will provide her with whatever she needs to succeed. We are so grateful!!!!!
Lindsays cardiac cath was rescheduled for January 8th. Her cardiologist didn't want to come in the day after Christmas. Wish we had the luxury of picking and choosing when we want to or don't want to go to the hospital. Please continue to pray for wisdom and guidance for her docs and healing of her heart. I'll keep you posted.
I had the opportunity to write with Chicken Soup for the American Idol Soul which is in stores now. The story has received much recognition and Mackenzie will be doing book signings and press with several of the Idols in Borders and possibly Barnes and Noble stores this January. I will keep you posted on dates and locations. It would be great to see you all!
We are spending Thanksgiving with my family this year and heading up to the cabin for the weekend. Mack is so excited! We haven't been there in over a year. I think every year of my life, I feel more and more grateful for the many, many blessings that have been poured out to us. Words could never describe what it means to us to have all five of our girls around the dinner table this Thanksgiving. It has been an unbelievable year! We are so thankful for each and every one of you! You have no idea what a blessing you are to our family and you may never realize the impact you've had on us. Thank you for helping us through the toughest year of our life! We love you all! Many wishes for a wonderful Thanksgiving holiday! God bless! Love, Aim
Wednesday, November 14, 2007 9:43 AM CST
Just a quick note to let you know that Lindsay's cardiac cath has been scheduled for December 26. Funny that I requested to have the cath done after Christmas... and... well, I guess thats after Christmas. Praying for good visualization of the conduit and all the things they need to see in order to make the best decisions for Linds. Also, praying for good pulmonary pressures, along with protection during the procedure and stable heart rhythms. And always pleading for more mercy and grace while trusting in His constant care. We will have results that day, but the doctors will meet as a team to determine a plan and that often takes weeks, unless there was something that needed to be addressed more urgently. Keep praying!
Mack is doing great, but is fighting a little cold. These are things that make you wonder what is coming around the corner. Praying her broken immune system can fight off the virus and for God's protection to keep her safe. We are heading to Cincinnati on Sunday and Mack will be in Day Hospital on Monday for her infusion of IVIG. I have to see my surgeon for a follow up appt and then we'll head back home. We were able to extend our lease through the end of December, and in the meantime, we are looking for a cheaper apartment to lease for another six months to keep our residency.
We started working with Make a Wish again with the hopes of heading to Hawaii over spring break. The kids are so excited... swimming with the dolphins is top on the list. Mackenzie was screaming and jumping up and down while chanting, "we goin to Hawaii, we goin to Hawaii!" when suddenly she abruptly stopped to ask, "Can we bring Ace with us?". I just about died. We may try to spend some time in LA on our way home... everyone's dying to go to Disney, but I'm not sure I'll be up for all those crowds. Praying for things to go smoothly and for the details to fall into place. It's an exciting opportunity and something for our family to look forward too in the midst of so much uncertainty! Living in the moment, its a life long lesson!
Thanks again for continuing to check in on us. We are so blessed to have the amazing support and love that you guys continue to pour out to us. It has and continues to make a difference in our lives. We love you all! Amy
Thursday, November 8, 2007 2:27 PM CST
Hmmmm... this is a hard one to write. I just spent the past hour on this entry and then it disappeared when I went to post it. Ugh! Sooooo frustrating! My emotions are all over and I just feel numb. Guess I'm overwhelmed by the mere thought of facing another heart surgery with Lindsay. Let me first start by saying that her eval today was good. Her heart function is excellent and for that we are grateful. But it appears that the inevitable is upon us. The echocardiogram showed her left sided ventricle (which is her morphological right ventricle) is enlarged. The cause of this is most likely from a narrowing in the conduit they placed to connect her heart and lungs. We knew this would happen and we are VERY fortunate to have gotten ten years out of the original conduit. The good news is... if they replace the conduit, her ventricle will most likely "recover" and return to normal size. The bad news is... its a MAJOR surgery and no one is excited to go back to the OR. We have schedule a stress test in two weeks (Nov. 29th) and then she will have a cardiac catheterization (angiogram) to further evaluate the narrowing in the conduit and the pressures in her pulmonary arteries. Fortunately, nothing is emergent since her heart function is so good. It sounds like she will have surgery in the spring unless something unexpected is found during the cath.
Lindsay made the cheerleading squad yesterday and that blessing has her thoughts preoccupied. Her main concern right now is not missing the next practice or game. We'll just leave it at that until we have more information from her cath. Please pray for wisdom for Lindsays doctors as they make some very important decisions and protection of her heart.
Mack, on the other hand, is back on autopilot. I never thought I'd see the day again. She's feeling great and doing well. Praising God for answered prayers in clearing the adenovirus! Beside a couple of pills twice a day, flushing her central line and hospital visits every other Friday, she's just enjoying being a kid again! We are still soaking in the gift of life that has been given to her. "Thank You Lord!"
Well, I think I'll go take some tyelnol and spend a little time in prayer... hoping He will reassure me that He's got it all under control and will mercifully carry this burden for me too. I am confident His timing is perfect and trying to rest in that. Also, claiming His promise to never give us more than we can handle. Whew! He must know I can handle more than I realize! I gotta tell ya, I'm ready to raise the white flag and throw down the towel. I'm too "spent" to gear up for another battle of anykind. But... somehow, someway... He will provide. He always has! More tomorrow. Much love, Amy
Saturday, November 3, 2007 7:58 AM CDT
It was a quick trip to Cincinnati and Mack's doctors continue to be amazed by her life. It was so funny because she was "remeniscing" on our way to the hospital, about all the things that have transpired over the past year. Talking about all her nurses, reminding me of the dreaded leg shots, but saying "Katie did a weawy good job wif my shots". She asked, "Can I see Sarah?" and "Whatta you fink Theo is doing?". "I was lucky I had a big room" she said. All I could see was the picture of grace that she was painting for me with such clarity. I sat there amazed that her reflections were all positive thoughts, as if she were referring to a vacation she had been on. Her "view" was definitely not a picture of suffering, not a picture of fear, and not of the battle of her life which reality likes to slap in our face. She actually went as far as saying... "'member when I heard da birdies. I took a wide in da ambulance to get sweepy meds and see Dr. Norb." I questioned, "When you were getting your radiation?" She said, "Yeah. Dat was fun, lets do it again." Amazing grace... can you see it?
Mack's counts were great! White count was 4.2, Hemoglobin 10.7, ANC 2400 and platelets were a record high of 32! Her infusion of IVIG went well, weaning the physiologic replacement of steroids, off the blood pressure patch and don't have return until Nov. 19th. She continues to feel great and is getting stronger every day. PT saw her yesterday and was amazed by the progress she has made in the last several weeks. Being at home, keeping up with the other kids and navigating the stairs has served her well... emotionally and physically. Praise God! Please continue to pray for protection, especially as we enter cold and flu season.
We started packing up the apartment in Cincinnati and moving stuff home as our lease is up at the end of this month. It all seems so weird. We left for Cincinnati last January wondering if we'd ever bring our little girl home. Seasons have changed, ten months have passed and life just keeps moving forward. Time does not stand still, even when our circumstances bring a halt to our lives. I feel like I've lost a year of life, but at the same time, gained so much. We have been blessed with the priviledge of witnessing a miracle and the honor of raising Mackenzie for another season... however long that season may last. "Thank you Lord!"
We are still trying to figure out the best way to get Mack more insurance. Please continue to pray for God's provision and guidance in this area. Also, Lindsay's cardiology work up is this Thursday (Nov 8th). Praying for good heart function and a pulmonary artery that has NO narrowing or blockage. We should have results on Thursday and I will post as soon as I know.
Thanks again for your love and support!
Many hugs and much love,
Amy
Saturday, October 27, 2007 12:56 AM CDT
I LOVE writing these updates from HOME!!! Mack has been running wild, driving her Escalade in fast gear, keeping up with all the other kids and loving every minute of "living"! She is so excited for trick or treating and can hardly wait for Halloween. She wanted to be Shrek this year and already has plans to be Froto from Lord of the Rings next year. She cracks me up. I will post pictures soon. Sometimes when I look at her, I get lost in the miracle of her life. It is so hard to put my mind around the magnitude of God's power, as displayed in Mack's life. And my gratitude runs so deep I don't know what to do with it. I don't know how to channel the volume of thanksgiving that flows from within me. The word "gift" has an entirely new meaning and "value" comes with loads of appreciation. I can't tell you how grateful I am for the ever changing perspective I've gained on life through this journey. I appreciate the suffering... for what's come out of it is priceless! I feel so underserving of the amazing grace that God has poured out to our family time and time again. And I will continue to praise Him and thank Him for His mercies that truly are new every morning! He is so good and sooooo faithful!
Mack's counts were awesome this week. Her platelets continue to slowly rise as does her hemoglobin and white count. Her adenovirus is beginning to come back although she remains asymptomic, the labs indicate its presence. Praying that her body will be able to keep it in check so that she doesn't have to restart the Cidofavir or weekly IVIG. We are heading back to Cinci on Thursday and Mackenzie will be in Day Hospital on Friday for IVIG. Hoping to drive back after the infusion on Friday. As of now her appointments will remain every other Friday. Please pray specifically for the adenovirus to clear and for Mack's immune system to grow strong.
Lindsay has a cardiology work up scheduled for Nov. 8th. Her heart has been doing awesome, but this work up is seven months past due and we know more surgery in inevitable. Please pray for good heart function and for Lindsays pulmonary artery to be wide open! I will keep you posted.
I'm feeling better every day. Moving about is no longer difficult, and I am looking forward to getting my energy back. So glad that is all behind me!
Well, thats about all thats going on here. More on Friday after Mack's appointment. Thanks for continuing to pray for our family. I hope you can see how your prayers have impacted our lives! Love you all, Amy
Monday, October 22, 2007 9:09 AM CDT
After a rough weekend, I'm happy to report that I am standing upright again! Whew! I was beginning to wonder if I'd ever be able to stand tall. Feeling much better, pain is definitely more tolerable and I'm moving around easier. Please continue to pray for swelling and pain to resolve and protection while my body heals. Going to the doctor this afternoon for a follow up appt, and then back again on Wednesday to get the drain out. Definitely NOT looking forward to that!
Mack and Steve headed back to Chicago yesterday and Regina and I will head home after my appt on Wednesday. Mackenzie's visits have moved to every other Friday and we just have to draw labs at home on the "off" Fridays. Please continue to pray for healing of Mack's marrow, production of healthy cells, and protection from all infections. Praising God for His continued provision for our family and His amazing grace in healing Mack. What an honor it is to be a part of His divine work through the miracle of Mackenzie. He is so good!
More tomorrow. Much love, Amy
Saturday, October 20, 2007 2:36 PM CDT
I'm home... but I am miserable. Pretty much gettin my butt kicked by all the pain. Yesterdzy I was so nauseated and thankfully that has passed. I am up and walking, if you can call it walking, half bent over. Everything on my stomach is so tight that I can't stand straight yet. I knew it was going to be bad, but this is much worse than I had anticipated. Makes all the c-sections look like a breeze! Everything went well with the surgery, thank you Lord. Please continue to pray for healing, pain relief, and protection during recovery.
Macks doing great and has been the best little care taker. She's a pro at all this and knows just what to do. Gotta run, too hard to write. I'll try again tomorrow. Love, Amy
Tuesday, October 16, 2007 7:46 PM CDT
Just a quick note to let you all know that we have been having a great time at home! Wow! It has been so incredible to be home for five whole days and "live" again! Mackenzie's teachers were blown away with how much she advanced while she was in Cincinnati and how good she is currently doing... both educationally and physically. Thank you to all Mack's therapists at Cincinnat Childrens who did a phenomenal job with Mack! Looks like she WILL be ready for kindergarten next year. She LOVED every minute of being home and working with her teachers again!
We got to see lots of friends/family this week and enjoyed a great afternoon at Dave and Busters (thank you Club Ace!) Mackenzie was super excited running from game to game and just when you thought those big brown eyes couldn't get any bigger... she spotted the prize store! Yes, an entire store full of prizes! It was so much fun.
Heading back to Cinci tomorrow and Mack will be in Day Hospital on Thursday for IVIG. Please continue to pray for protection and healing.
My surgey is scheduled for Friday 8-noon. Please pray for God to guide the surgeon and give her wisdom and guidance during my surgery. Also, for His hand of healing to cover me during recovery.
Before I run, Mack has been cracking us up all week, so I thought I'd post a few of our favorites...
"Mom, can you fwat iown my hair?"
"Dat just wike Ace, mom." "Whats is?" "He's sexy." (referring to some guy on tv)
"Mom, guess what? I think my cells are doing their thing. Day makin' babies.....(long pause) cute wittle babies."
"Mom, when you have your surgery, don't forget... no eatin'! And you're gonna be pwetty sweepy too. I'll take care of you."
Kali asked Mackenzie something about the future and Mack goes, "Na, I'm just gonna hang out at da hopal with Theo."
Thanks again for being a part of our lives! I will make sure that Steve posts on Friday after my surgery. Your love and prayers mean the world! Much love, Amy
Tuesday, October 9, 2007 11:12 AM CDT
****Friday 10-12-07 12:30pm UPDATE******** HEADING HOME!!!!! Mack's labs were really good... no more IV fluids at night! Praise God! Her counts are all on the rise, platelets went up from 10 to 14. They still have a long ways to go, but we'll take slow and steady. No visits until next Thursday so we will stay home until Wednesday. Just got word that Mack's insurance ran out in July. Got a pit in my stomach just thinkin' of it. I knew it was coming and I knew it would happen but something about being dependent on "the system" makes me nervous. Please pray for medicaid claims to be processed without any difficulty. Working on job opportunities for me to get Mack insured again and get us home! After next week, her visits should move to every other week. God is so good and I will continue to keep my eyes fixed on Him and trust Him to provide for us as He always has. More from home.... Love, Amy*************
I don't know where the days go to but they seem to be escaping me. We had an awesome weekend together and Mack had a great birthday... "weal birtday" that is. No surprise to anyone, she wanted to go to build-a-bear on her birthday and she wanted to eat at Big Boy. I delivered on the first wish, but frankly I couldn't have another meal at Big Boy this week, so we went to one of my favorite places, Mimi's Cafe, instead. Big Boy is Mack's FAVORITE place to eat... I'm not quite sure why, but those big brown eyes get her there several times a week. As a matter of fact, she was begging Steve this weekend... batting those eyes, she said, "pwetty pwease with a cherry on top?" and then mumbled under her breath "dat always works". She has said so many hilaious things in the last month, always bringing such joy to our lives, I cannot imagine life without her. Her sense of humor is evolving rapidly and she will always give her two cents.
Home health came this morning to draw labs and we are waiting anxiously for the results. We haven't given Mack IV fluids the last three nights and if her chemistries are good, she will stay off fluids. She also hasn't had a blood transfusion in five weeks and no platelets for three weeks. COME ON BONE MARROW!!! Her IVIG infusions are spacing to every other week, so if things are stable with her blood counts and chemistries, there is the potential of just going to the hospital every other Friday. AMAZING! So, we are still in Cincinnati, but have and continue to go home weekly for long weekends. Starting this Friday(after Mack's appt), we will be spending most of the week at home in Illinois so Mack can get her therapies and just travel down here for long weekends and Mack's Friday appointments. It is a lot of driving, but its worth it to be together. We have our apartment in Cinci leased until the end of November at which point we hope to be home and just visiting here twice a month. Please pray for Gods wisdom, provision and guidance in this area. We still need to work out Mack's insurance issues for us to give up residency here in Ohio. I've applied for a job at Steve's school, and am just leaving that in an open hand. I am completely burned out with nursing, so I can't see myself going back to the medical field anytime in the near future. We'll see where God leads us.
My surgery date was changed to October 19th, just having repairs to my abdominal muscle/facia which seems more involved than I originally thought. The surgery will be done here in Cincinnati at Christ Hospital and it should just be an overnight stay. Even the thought of those 24 hours at the hospital makes me sick to think about... just want to get out and get home. To say, "I hate hospitals" would be an understatement. Regina will come to Cincinnati and stay with Mack and I for the week after my surgery until I'm back on my feet.
Well, Mack and I are heading out to the mall. Please continue to pray for bone marrow recovery, specifically the production of platelets. And also prayers for stability of all Mackenzies electrolytes along with protection from all infections. Thanks for keeping up with us and for celebrating another year of life with us. We love you all more than you know. Amy
Monday, October 1, 2007 8:22 PM CDT
I don't think I can even sum up with words how fabulous our weekend was! To celebrate the gift of life, particularly the fifth year of life for Mack, was extremely meaningful. I find myself getting emotional and/or sentimental at the strangest times... moments when I would least expect it. We enjoyed every minute of Macks excitement at her party. She was wild and in her element. The kids cheered her on as she tried to break open a pinata. Yes, she truly did have two cakes this year... spoiled is an understatement. AND I'm not the only one who can't say "no" to her. Steve, Regina and the girls are heading down to Cinci this weekend to celebrate the "weal birtday". Oh, if only you could see how happy she is! See, my eyes are welling just thinking about her happiness. I cried through most of the movie "The Game Plan" this weekend, must just be a release. To witness a miracle and experience God's grace in abundance and His provision in perfection is just so awesome!!! The human mind cannot even comprehend His goodness. We are too limited.
Heading over to the hospital tomorrow for labs and a recheck on the UTI. Praying for bone marrow recovery and marrow full of healthy cells. Hoping the need for transfusions are behind us. Trusting in His protection from all infections and Believing in His constant care for Mack and our whole family. Then back in Day Hospital on Friday for IVIG. Keep PUSHing and PULLing!
Looks like Mack will resume therapies and school in our home in two weeks! She loves school and can't wait to see all of her teachers. Looks like I will also be having surgery in two weeks (Oct 18th) and ask for prayers of protection and quick healing. Also asking God to work out all the details for health insurance for Mackenzie, either through Steve's work or in a new job for me. I know He'll lead the way and we're ready to follow. His plan is perfect.
Thanks again for all you do, and for being such a big part of our lives. Hugs and love to you all! Aim
Sunday, September 23, 2007 10:22 PM CDT
*****WED 9/26 UPDATE 8PM********** Just wanted to let you know that Mack and I have had a great week. The days seem to fly by as we have been keepin' busy. Heading to Day Hospital tomorrow for IVIG, platelets and possibly blood. "Gonna get all tanked up" as Mack would say, before heading home for the big birthday bash this weekend! Mack's a little concerned that she won't be having a second party next weekend on her "weal birtday". The girl would celebrate all month if she could. Her favorite thing lately is Build a Bear Workshop. Seems we find ourselves in that store multiple times a week. As a matter of fact, all the workers know her now. Guess I've spoiled her a bit, its just so hard saying "no" to those big brown eyes after everything she's endured. I talked with Mackenzie's preschool teacher today and we are hoping to resume her PT, OT, Speech and school therapies at home now that we will be spending more and more time there. She will have all the same teachers as she had last year and they are looking forward to seeing Mack in our home again. She was so excited when I told her about it. She said, "yeah, I gotta get weady for kindergarten". I was cracking up. Please continue to pray specifically for cell production. Think we'll focus all our prayers on platelet production, white blood cell production and red blood cell production. Grow cells grow!!! Thanks for praying us through this incredible journey. Every time I look at Mack, I am in awe at the work of God's hand. Her gift of life is SUCH a miracle!!! If I get a moment, I'll update from home, otherwise I'll write Monday night when we return. Love you all!!!! Amy*********************
Ok, it has been entirely too long since I've posted. I guess thats a good thing.... means we are engaging in "life" again. :-) Mack's clinic visits last week went well and her counts remain stable. Seems she is only needing platelets weekly now, so our hospital trips are limited to Fridays!!!! That has been a great change!!! It's been almost three weeks since her last blood transfusion and we are hoping she won't need anymore. She still on antibiotics for her UTI, but hopefully its cleared. They'll retest again next week. Sounds like our clinic visits will move quickly to every other week and then once a month when she no longer needs blood products. Wow! I wont know what to do with all that time on my hands. haha!
We stayed in Cincinnat this weekend to celebrate Octoberfest with Regina (our au pair) as she is from Germany. We've eaten way too much! Steve and the girls came down on Friday and we've had so much fun. Spent the day at Kings Island today and swimming at night. Its been nearly a 100 degrees here this week and definitely doesn't feel like fall! Mack and I are heading home next weekend to celebrate her birthday (a week early) but it was the only time we could get my entire family together. I can't believe she's turning five! There were days that we never thought we'd get to see her celebrate her fifth year of life. We have much reason to celebrate this year and we will! I'm already thinking about the best way we can celebrate with all of you... hoping to throw a big "Praise Party" when Mack is healed enough to be with crowds and we'd love for you all to join us. I dream of the day we can meet all of you and thank you personally for everything you have done for us. I'm hoping maybe in May/June 08. Stay tuned for details :-) Thanks again for keeping up with us and continuing to shower us with your love and support. Please continue to pray for good production of healthy cells and bone marrow recovery so that Mack would no longer need transfusions and protection from all infection. Many hugs and love to you all, Amy
Tuesday, September 18, 2007 7:59 AM CDT
Another great weekend at home! Sure could get used to just staying there! Always hard to leave, but looking forward to the day when our family is all in one place again!
Last weeks biopsy results from her bone marrow aspiration were good. No leukemia seen in the biopsy and the cells revealed 100 percent donor engraftment. That is HUGE news! There are still very few cells in her marrow and we are praying that God would continue to heal and fill her marrow with all the healthy cells she needs. Heading to clinic today... it will be a week since her last platelet transfusion and two weeks since her last red blood cell transfusion! COME ON BONE MARROW! More good news... she finally cleared that pesty adenovirus after three and a half months! No more weekly cidofavir infusions - hooray! Hoping that this will help her counts rise. On the downside, her UTI is back and so she's on another two week course of antibiotics. Guess if its not one thing... its another.
She's really been feeling great and her not-so-little personality has returned! It is so great to see her marching around and keeping up with her sisters and cousins and friends.
I think thats about all thats going on here. Please continue to pray for protection and production of more healthy cells! Much love, Amy
Tuesday, September 11, 2007 4:33 PM CDT
Wow! It has been a loooooong day of waiting! I didn’t think today would be so difficult, but I guess because of where we’ve been and all the times we’ve had the carpet ripped out from under our feet, I am ashamed to say that my anxiety level grew quickly as the day went on. I just received the phone call we’ve been waiting for and there is NO LEUKEMIA present in Mack’s marrow! PRAISE THE LORD!!!! I think I have some form of post traumatic stress syndrome and todays waiting was extremely difficult. It has been our experience that the longer the day goes on… the news is generally bad. Part of being a nurse… you know too much! Doctors realize they will have to spend a lot of time with the family when there is bad news and they have to talk amongst themselves to provide some sort of plan. So, they try to get everything done that they need to get done and deal with the difficult stuff later in the day. I was so mad at myself for allowing doubt to creep in, but I couldn’t help but relive all of our past experiences with Mack and Lindsay. I don’t even know how to describe what it is like to wait on life altering news. It’s worse than anything I could explain with words. The involuntary pit in your stomach, racing heart beat, sweaty palms and feet, nausea and this feeling that you just want to “get out of your skin” and escape… its very strange. It becomes difficult to breathe and you almost feel as though the walls are closing in on you and you are suffocating. It seems that time literally stops and every minute is an eternity. It never gets easier.
I feel as though a ton of bricks has just been lifted from my shoulders as I breathe a HUGE sigh of relief. We are still waiting on other results that will provide more information about her marrow recovery. Those results will be back over the next two to three days. Although there was no leukemia seen, her bone marrow was “hypocellular”, meaning there were not as many cells as there should be. The pathologist said she thought it looked like “regenerating marrow” and typical for a post transplant patient. Of little more concern, there were VERY few platelets seen in her bone marrow. The good news is that the ones that were there appeared normal and she felt it was just taking its sweet time to recover. I guess that’s nothing new! We knew her new marrow was very sluggish! But I’ll take slow and steady… afterall, slow and steady wins the race! I’ll be the first to admit, slow is frustrating, but when it comes to the medical field and the fragility of life, I’ll take steady any day!
As if that wasn’t enough news to celebrate… I just received a phone call as I was typing about an anonymous donation to be given to our family. The dollar amount of $2000.00 is exactly the cost of one months rent plus utilities here in Cincinnati. Thank you to the family who generously gave from their heart. Your donation has alleviated another burden from us today and our hearts overflow with gratitude. The timing of your donation was amazingly PERFECT! It was as if God was telling me… “See, I am here. And I will always provide for your every need. Do not worry about tomorrow, I will take care of you.” I was claiming Psalm 112:6-8 all day today which says, “Such a man will not be overthrown by evil circumstances. God’s constant care of him will make a deep impression on all who see it. He does not fear bad news nor live in dread of what may happen. For he is settled in his mind that Jehovah will take care of him. That is why he is not afraid.” I was NOT going to claim the doubt that satan was haunting me with all day long, despite the involuntary reaction of my body. My mind was making the choice to listen to the Voice of Truth.
Thank you all so much for your love and prayers… especially on this day of waiting! We are so blessed by your care and concern for our family. And we are so grateful to have such an awesome army fighting together with us. It’s an incredible feeling to be supported by so many… this is one battle we’d never want to do alone. So, as our BMT doctor said to us… I’ll say the same to you. “Go have a glass of champagne and celebrate”! This gift of life is nothing short of a miracle… the divine work of God’s powerful hand! “Thank you Lord!” Much love to you all, Amy, Mack and our entire family
Monday, September 10, 2007 8:47 AM CDT
******Tuesday 9-11-07 6am UPDATE*********Mack will be in the OR this morning at 8am for her bone marrow aspiration and spinal tap. Please pray for peace and comfort for Mackenzie and for healthy cells to be seen in her bone marrow. Thanks again for continuing to carry her and our family in prayer. We will have most results later this afternoon. I will post as soon as I have information. Love you all, Amy***************
What an amazing weekend! We thoroughly enjoyed every minute of being together! The car ride home went well, but I didn’t expect the rush of emotions that came over me, the closer we got to home. As we drove through downtown Chicago, I began having flashbacks of the night Mack relapsed. We left in such a hurry that night, driving to Cincinnati in the wee hours of the night and never returned. I was thinking about how there was never any closure… our oncologist had just given us the news of Mack’s relapse and laying out the options for treatment. Steve was sobbing and I was completely numb… emotionless. Mackenzie was playing with the nurses, looking and feeling great, with no idea what was about to hit her. I remember looking at her thinking she looks so healthy. It was hard to understand that this aggressive disease had such an imminent threat on her life. I must have had some seed of anger because after our doctor finished explaining the different forks in the road ahead and told us she would support whatever decision we made, I said, “I don’t know what we’re going to do. All I know is I can’t step foot in this place another day.” With that said, I grabbed our stuff, Mack and Steve and just walked out. Never said “goodbye”, “we’ll be in touch”… nothing. We just walked out and never returned. It’s all so strange when I think back on that night.
As we got closer to home, I couldn’t fight back the tears that were flooding our van. Daughtry’s song “Home” came on the radio and as soon as the chorus began, “I’m going home…to a place where I belong” I think I just broke down. The reality had sunk in… I was bringing my little girlie HOME! So much love and gratitude and thanksgiving completely consumed me. It was all so overwhelming.
I think it took Mackenzie all of 30 seconds once she walked into the house to let down her guard and jump right back to that place she was at nine months ago. It was like she didn’t miss a beat. Instantly, she began chasing Charlie and running around the house with her sisters. It was an incredible feeling to be together under our own roof! I just wanted time to stop so we could take it all in before having to return to Cincinnati. I knew the weekend would fly by too fast and it did. There was not enough time to see everyone and do all the things we wanted to do, but the gift of “family time” is one thing we will never take for granted! Thank you Cincinnati Childrens and all of Mackenzie’s nurses and doctors for the incredible care you have provided for Mack. Thank you God, for holding our precious little girl in the palm of Your hand and faithfully caring and providing for her every need. Thank you to all of our family and friends who have never given up on their incredible support and efforts to help our family. Thank you to all the families we have met along the way who have lent an ear or offered words of wisdom. Thank you to all our new friends whom we have yet to meet in person, but have grown to love through this website. We love you all!
Getting ready to head over to the hospital this morning… expecting blood and platelet transfusions in preparation for tomorrow’s bone marrow aspiration. Please continue to pray for complete healing, for progress, protection and production of healthy cells! COME ON BONE MARROW! Mack’s OR time is 6:30am. Please pray for peace for Mackenzie as she is apprehensive. She already told me, “I’m worweed ‘ bout da sweepy meds” followed by “and da worst part is no eating”. I will post as soon as we hear any news from the procedure. Pray Until Something Happens and Pray Untill Leukemia Losses and then keep praying! Your prayers have and continue to impact and change our lives!
Well, better run. Thanks again for everything you guys do for us! Much love, Amy
Thursday, September 6, 2007 10:54 AM CDT
Well, I’m writing from Day Hospital watching the clock waiting for Mack’s IVIG and platelets to finish! I am beyond ecstatic because by 2pm we should be on the road HOOOOOMMMEE!!! To say I’m excited would be an understatement, we have waited for this day for nine months. I wish we were going home to stay, but we’ll take weekend visits for now! Just having our family all together in the luxury of our own home seems to be the greatest gift ever. Mackenzie is having mixed emotions about leaving. She doesn’t want to leave this hospital or our apartment … I think it has given her great security. I continue to reassure her that we will be coming back. Last night when we were praying she interrupted… “and thank you that I can go home to my real home and that I can see Charlie” (Charlie is our cat). I know once we are there, she won’t want to come back. But all the change is difficult for her. I feel overwhelmed with emotion and can’t fight back the tears thinking about seeing her walk in our front door. I wish you all could share that moment with us, but I will be sure to video. All I can say is “Thank you” for being such a huge part of our lives. Your relentless support and prayers have carried us to this day and even though the journey is not over, this is a HUGE milestone! “Family” has been totally redefined in our book and our “family” has grown bigger and stronger over the past year! We couldn’t have done it without the Lord, and He has blessed us greatly by expanding our “family”. Thank you all for being a part of our lives!
Boy, I have no idea what the weekend will entail. I don’t know what “normal” looks like anymore, but I am sure we will enjoy every minute of it! We will be returning on Sunday, back in Day Hospital on Monday for blood and platelets and then the big bone marrow aspiration on Tuesday. I believe her aspiration is scheduled for 6:30am. COME ON BONE MARROW! Please continue to pray for healing of her marrow, and production of healthy cells…. Praying for positive and encouraging results. We should have most of the results back late in the day on Tuesday and I will keep you posted.
Well, I should run and start getting things ready to go here. Ahhhhhhhhhhh!!! Ok, just had to scream… everyone here is so excited for Mack! Love you all, Amy
Tuesday, September 4, 2007 3:37 PM CDT
Well, what we thought was going to be a very HUGE day for Mack... turned into a very long and boring day. Which I guess, in the world of oncology, is a good thing. Mack's hemoglobin was too low to go under anesthesia for her bone marrow aspiration so we stayed the day for blood and platelets, but never made it to the OR. Her bone marrow test has been rescheduled for next Tuesday so please continue to pray for healthy marrow!!! She continues to look great, and feel great... finally losing some of the swelling. Her hair is really growing fast and she is up and moving much more. The pesty adenovirus persists and we ask you to pray for God's divine intervention to rid her body of this virus. Her counts were borderline today... white blood cell was 2.8 and ANC was 1510. Those numbers were a week off the GCSF (bone marrow stimulant) so the decrease in her counts was expected. Now we are praying her marrow can hold its own and keep producing. COME ON BONE MARROW!
It is so quiet here without Steve and the kids. Everyone is back home and into their routine. Regina, our au pair, has been a wonderful addition to our family. We've had so much fun learning about Germany and getting to know her more. Looking forward to having her spend the year with us. She fits right in with our clan. :-)
I had planned on going home Thursday to Sunday this week and my mom was planning on coming down to stay with Mack. But, now it looks like I might be able to bring Mack home with me. I CAN'T even imagine how wonderful that would be. I guess we need to take advantage of a few weekends before the snowfall and cold/flu season! I'll let ya know and I'll surely video Mack's "homecoming"!!!
Please continue to pray for protection, production and PROGRESS! I wonder every day WHEN life will return to some sort of "normal".... whatever "normal" looks like nowadays! We have been away from home for nine months now. It has been a very long haul, with much road still ahead. Keep PUSHing and PULLing! Much love to you all, Amy
Tuesday, September 4, 2007 6:18 AM CDT
Getting ready to head out the door for the hospital. Mack will be in clinic this morning for platelets and then go to the OR for her bone marrow aspiration at 11:30. Please pray for peace and comfort for Mackenzie and healthy bone marrow and good production of healthy cells. There is a chance her aspiration will be cancelled if her hemoglobin is too low. She will then get a blood transfusion and then reschedule the bone marrow aspiration. Praying this morning for good hemoglobin so we can get the aspiration over with. I will update later today. If she has the aspiration, we should have most results later this afternoon. Big day for our family today, thank you for keeping us in your prayers. Much love, Amy
Saturday, September 1, 2007 8:08 AM CDT
Ok, so I’m still working on getting pictures posted of Mack riding her new Escalade. She’s a WILD driver! I will get them up sometime next week. This week has been a whirlwind. I drove home for the night on Wednesday to meet with an au pair from Germany. We are so excited, Regina seems like she will fit right into our family… so warm, loving, caring, outgoing and friendly. Because she was already in the US, things moved quickly and she moved in yesterday! God totally blows my mind the way He orchestrates things! Steve and the girls, along with Regina drove down to Cinci yesterday to spend the holiday weekend here. Looking forward to some fun times together…. And ummmmm, yes Nick Lachey is in town this weekend. :-)
Mack’s counts are on the rise again. Praise the Lord! We are stopping the GCSF and hoping her bone marrow will hold its own. She is still scheduled for her bone marrow aspiration on Tuesday, but there is a chance they will have to reschedule it if her hemoglobin is too low. We decided not to transfuse her today and give her the benefit of the doubt. Please continue to pray for healthy marrow! Now for the ultimate exciting news…. After a serious sales pitch and a little coaxing… Mack will be able to go home one or two weekends a month! We are totally floored! Planning on the weekend of the 15th to be Mack’s first night HOME. I can’t even imagine having us all in our own beds and running around our own house. What an amazing miracle and gift from above! “Thank you Lord!”
Please continue to pray for “progress”, “production” and “protection” for our sweet Mack. Come on bone marrow!!!! We love you guys so much and our hearts are so full of thanksgiving for ALL you do! Amazing how much stronger we are when we “do life together”! Thanks for helping us carry this HUGE burden. You have made a profound impact on our lives! Much love, Amy
Monday, August 27, 2007 6:34 PM CDT
I think for the first time since we've been to Cincinnati, we had a weekend that felt somewhat "normal". Mack was in clinic all day on Friday for blood, platelets, and IVIG. On our way home from the hosital... we detoured at Toys R Us. I guess when you've had a bone marrow transplant and you've been fighting for your life longer than you've been alive... you get a little spoiled. Believe it or not, Mack's movin' up... leaving her Dora bike behind for a new black Cadillac! Yes, she's four, drives an Escalade and has a 26 year old boyfriend. Now thats living!!!! haha! Yesterday I took the girls horseback riding on some rough trail rides. It was awesome and they loved every minute of it. Today we hit the Newport Aquarium where Mack's favorite sharkray "Sweat Pea" lives. We actually had three full days away from the hospital without even a phone call to come in for labs, etc. It has been wonderful!
Now, back to reality... heading to clinic tomorrow, more platelets I'm sure. I'm hoping to talk the doctors into letting us bring Mackenzie home once or twice a month for long weekends starting... this weekend! We'll see how much sand I can sell in the desert. :-) I'll have to come up with a pretty good sales pitch to pull this one off. I just think it would do wonders for all of us!
Mack's UTI responded well to antibiotics and cleared quickly. She's losing her "swelling", but has a long, long way to go. It's great to see our little girl coming back! She seems to be moving around more easily... looking good and feeling good, now if we could just get that bone marrow to kick in gear! Please continue to pray for "production", "progress" and "protection". Wow, God just gave me those three words as I was writing. "Thank you Lord!"
I'm happy to report that I'm "back". I was feeling pretty down and discouraged as everyone was heading back to school/work and Mack and I sit here... stagnant with no end in sight. My pity party is over and my attitude is adjusted, my focus is fixed again! Pleading with God for guidance and direction in "how" to move forward with our lives. I KNOW He will show the way and His provision will be remarkable! Well, thats about it for now. I'll write again tomorrow after we have lab results and see what the doctors say about the "H" word... HOME! Keep praying guys, YOU have carried and pulled us through so many days when we couldn't go! Love you all! Amy
Monday, August 20, 2007 1:09 PM CDT
Mack and I were in clinic today,we left and are heading back in a little bit. Those darn platelets are always so low. Another platelet transfusion and an IV antibiotic as it appears that Mack has a urinary tract infection. They'll start her on something oral tomorrow. Her counts stayed about the same. Think her white count was 4.5 and her ANC was 3200. Slow and steady, I guess. Slow is frustrating but I'll take steady anyday! I decided to cancel my interview for the pharm sales job. Ahhhhh, it kills me! Such a great opportunity, but I had no peace about the job. The timing was just not right. Mack still has alot of hospital time, and many "unexpected" visits like today. Not sure how I could have swung that without adding a whole lot of stress. I can only trust and believe that when the timing is right, He will provide. Trying to walk in His Will these days has been tough when I just want to break out and get on with life. I am not a "mundane" person, so the monotony of the same old thing day in and day out feels torcherous at times. It’s just the way I'm wired up... I like to keep busy with lots of action and I've been sitting in hospital rooms and doctors clinics for over eight months. Sometimes it feels worse than a jail sentence. I wonder what it has done to my psyche. :-) On the flipside, I’m trying to stay focused on the fact that we have been amazingly blessed by God’s healing hand and the fact that Mack is still on earth with us. I will always fall to my knees with thanksgiving and be eternally grateful for that gift of life! Just wish it didn’t have to be such a long, tiresome road. Can’t believe I’m even complaining after the miracle we’ve been given. “Forgive me Lord”. Yes, I know it’s only human, but it doesn’t make it right.
We’re still looking for an au pair, it’s hard to find someone willing to take care of five kids and I’m sure Mack’s cancer isn’t a situation that most people would like to get involved with, when given the choice. Fortunately, our neighbors au pair is going to help us out this fall with getting the girls off to school in the morning. This is a HUGE burden off my shoulders and another example of God’s provision.
Mack has a bone marrow aspiration scheduled on September 4th at 6:30am. Please continue to pray for healthy bone marrow and normal production of all her cells. There is still no end in sight as far as “coming home”. Mack continues to need platelets twice a week and blood about every 10 days. She really needs to be down to twice a month visits before heading back to Chicago. Still praying for His wisdom and guidance on where He wants us to be and leaving that in an open hand before Him. Please continue to pray for patience for us all. Thanks again for all you guys do! We love you much! Love, Aim
Saturday, August 18, 2007 4:21 PM CDT
So hard to watch the weeks go by and the seasons change and still feel like we are at a stand still. I NEVER imagined that we'd still be here with so much track ahead after nearly nine months. I look back and wonder how on earth we made it through six months of inpatient days when I can hardly stand 8 hours in Day Hospital. I feel so "ancy" to get on with life and yet, I have absolutely no control over any of it. Guess today is just one of those frustrating days. I've been seriously evaluating the potential job opportunity here in Cincy and am realizing that as much as I desperately would love to do pharmaceutical sales, the timing doesn't seem right. Think thats dragging me down because its such an amazing opportunity that I want to take advantage of, but Mack's care is still so involved, I can't see how I can make it work. I wouldn't want to make a bad decision just to escape my reality. And I wouldn't want to leave Mack when we've come this far, she still needs me. Bottom line is I haven't had any peace about the job, and it seems God is telling me that its not right. I can only trust that He must have something else in store for me and His timing and His plan is better than mine. Therefore, as hard as it is, its back to practicing patience and waiting on the Lord. Still leaving everything in an open hand before Him and asking for His wisdom and guidance in our lives. I KNOW He will provide. And He'll probably do so in some amazing way that I would have never thought of. Please continue to pray for His direction for our family.
We're still in the difficult process of finding the right person to help at home as our au pair. Please continue to pray for God's divine intervention to bring us the right match and/or show us another option for help in our home. So many "unknowns" in our life now.
Mack is feeling pretty good and for that we are greatful, but she is still weak and doesn't have much energy. We've been taking her out and doing a little more, hoping to help her feel a little normal and motivate her to get moving. I can tell she wants to do more, but all the swelling makes any movement difficult. Please continue to pray for resolution of the bloating side effects from the steroids, for protection of all her organs, for His strength to infuse her body and that He would encourge our little girl (and her mom too :-)). A bone marrow aspiration has been scheduled for the end of the month and we continue to plead for healthy cells and good bone marrow function. COME ON BONE MARROW! I'll let you know the date and time as soon as I find out.
Thanks again for keeping up with us despite the "busyness" of life. We are so thankful for your friendship, your love, your prayers, and your listening ear. Much love to you all, Amy
Monday, August 13, 2007 3:17 PM CDT
****Interview with pharmaceutical company on Wednesday (a week from today) Please pray for Gods guidance and direction and that He reveals His plan to us. Trusting and believing He will provide.********
So sorry it has been a week already since my last update. (Thanks Jodi :-) Things are pretty status quo here. The recovery process for Mack is extremely slow. The umbilical cord cells are not as "smart" as donor cells and they need a lot of time and "care" to learn to do what they need to do. I think thats about as simple as I can explain it. We tried spreading Mack's GCSF to every four days and her counts plumeted on Friday. Back to every three days and now they are slowly rising. She continues to need platelets twice a week and blood about every 10 days or so. Her cyclosporine levels have been really high despite continuing to decrease the dose. Not sure why this is... her kidney and liver numbers are good, so it doesn't make sense that she is not clearing her cyclosporine. It looks like she is going to wean herself right off of it, at this rate which is just fine. The plan was to begin weaning her off next week anyway. She is on her last week of the steroid taper. Next week she will begin a different steroid (hydrocortisone) to help replace the bodys natural production of steroids. Her system has been supressed for so long they want to give her "physiologic replacement" for a few months as a safeguard. Her magnesium level remains low and tomorrow we'll see if she needs to have IV magnesium daily. This is most likely due to the high level of cyclosporine in her body. Her phosphorus seems to be stablizing and the rest of her electrolytes look good. Yea God! Lets see, what else... Oh yeah, her adenovirus level from Friday came back at "0"... HOORAY! If it stays there, she would only need three more weeks of cidofavir (antiviral) infusion which she has been receiving weekly on Fridays and we could start decreasing her IVIG. This would be HUGE! Please continue to pray for protection of Mack's kidneys and liver. The docs are seriously surprised at how well they have held up and we know this is a direct answer to our prayers! Also, continued prayers for protection of her heart, lungs and bowels. Continuing to pray for a shield of protection to guard her from all threats to her body during this next year when her immune system is so fragile. Also, MAJOR prayers for those new cells to learn what they need to do and specifically for BONE MARROW RECOVERY. COME ON BONE MARROW!
On the family front, Steve is leaving tomorrow and will only be returning every other weekend as long as things are stable here. The girls will be here with me for another two weeks before heading back home and starting school. We are still in the process of finding an au pair. We have three potential girls... two from Brazil and one from France. Trying to get in touch with everyone has been difficult so the process is taking a little longer, but we are patient. Once we find a good match, it will be about four to five weeks before she is actually in our home. Please continue to pray that God would choose the perfect girl to help us this next year. I've applied for a pharmaceutical job here in Cincinnati and am hoping to hear something regarding an interview this week. Talk about leap of faith and total reliance on God's divine guidance in our lives. The job itself sounds like something I would enjoy and would be a good fit for our family life, but thinking about the domino effect of a decision like that is overwhelming. I have no idea what is best for our family, but I am completely confident that God does. Just trying to take the steps necessary for Him to open and close doors leading us where ever HE wants us to go. I know if He leads me to this job here in Cincinnati, He will provide for all the other things that would need to fall into place. And if this is not the right thing, then He'll show us where to go. I was thinking back to last summer, about this time, when I found out that I did not get that job I had applied for with Humana. I remember thinking that it would be such a good fit for our lifestyle, but not a job I would want forever. I was so disappointed (and shocked) when I didn't get the job, but trusted that God knew what was best. That was in August and Mack relapsed 4 months later sending us to Cincinnati. Clearly, that would have been a disaster if I had just started a new job. So, even when things look good to us, or right for us... we still need to leave them in an open hand before the Lord, because He truly knows what is best for us. Its just hard being patient and giving up that control. As humans, we like to manipulate and control our lives as much as possible. But, in reality, the more we wait on the Lord, the greater the blessings and the greater the level of contentment and satisfaction we will have in life. Once again, "the quick fix" is NOT the answer. So, please pray for God to show us what is best for our family and that He would continue to provide for our every need as He has done sooooooo faithfully all along!!! Well, I think that should bring you all up to speed on our lives. There is so much going on, but at the same time, nothing going on. It is a very strange place to find ourselves living in. Your prayers are so important to us and have truly carried us, sustained us, strengthened us, healed us, encouraged us, and given us the stamina to perservere. We love you all and appreciate all you have done! Keep PUSHing and PULLing, the road ahead is still long. We don't anticipate being able to return to Illinois before the end of the year. Much love to you all, Amy
Tuesday, August 7, 2007 9:05 PM CDT
Mack and I had a busy day today. Clinic was over five hours, she got platlets. We had several errands to run and everything takes sooooooo long because Mack moves at a turtles pace. She gets frustrated with herself that she can't do things the way she used to. She still very bloated from the steroids making it difficult to move along with the overall weakness and neuropathies in her feet/ankles. Plus she tires easily.
Its been quiet around here tonight. Mack and I were able to spend some time in prayer. I was praising God for His miracles and the healing He has done in Macks life. I was startled when she blurted out, "Oh, Hello Goddy." (she has never referred to God as "Goddy", but often when she is affectionately referring to someone, she will give them a nickname ending in "y" such as "Linny", "Grammy", "Mommy", etc.) I stopped mid sentence and opened my eyes. "Were you just saying "hi" to God?", I asked. "Uh huh". "Why did you say that now while I was praying?" "Cuz He's here", she answered. I finished praying and walked out of the room and wept. I think those were three of the most powerful words coming from a four year olds mouth. "Cuz He's here". He is here, always has been and always will be. He will never leave us. I wish we could all see life through the eyes of a child, untainted. The world distorts our vision and we so easily forget "He is here". "Thank you Lord for Your presence and Your faithfulness. Forgive me for pushing you aside as I go about my daily routine and forget YOU ARE HERE. I love you so much Lord, and I am so grateful for Your presence. Thank You again, for all the things you have done in our lives. You are our rock. You are our strength. You are our everything. Without you, we are nothing. Please Father, continue to watch over Mack and protect her from all harm. Protect her heart and her lungs, her kidneys and her liver, her bowels and her brain. Shield her from any threat to her body and strengthen her immune system by Your hand. Give her body all that it needs to recover, strengthen her and encourage her. Oh God, you are so good and we praise You. We continue to entrust our lives to You and ask for wisdom, guidance and direction. We know Your plan is perfect and we long to follow it. Thank You Father for your unwaivering love. In Jesus name, Amen."
Please continue to pray for protection especially from all infections and for Mack's kidneys and liver. I've noticed she's started coughing today and this is a concern. Please pray specifically for protection over Mackenzie's lungs. Heading back to clinic tomorrow for more labs and to Day Hospital on Friday. I honestly don't even know how to say "thank you" anymore. You continue to amaze us with your overwhelming love and support and relentless efforts to help us through this battlefield. You all are such a blessing in our lives. Thank you. Many hugs and much love, Amy
"Cuz He is here" ~ Mackenzie Johnson, 4 years old, August 7, 2007 Let's not forget it!
Sunday, August 5, 2007 4:42 PM CDT
It’s Sunday and as usual, Mack and I are stuck in the hospital. Sundays are so long! And the oncology and BMT units are totally full so we are on the endocrine floor. Everyone seems a little apprehensive. Plus it’s the weekend and the skeleton crew is here… no one seems to know whats going on. Ahhhh! Just about finished with her IVIG, but then she needs blood after that. Hoping to be out of here before ten o’clock! Steve and the girls headed home this afternoon for doctor and dental appointments. Sure is quiet around here. On Tuesday someone from the au pair company is coming to interview Steve and the kids. They said it could take two to three months before we have someone in place. Please continue to pray for the perfect match and a good fit for our family. Seems like we have so many things in our lives that are open ended right now. I have a potential job lead here in Cincy with a pharmaceutical company that just came out of the blue. Sounds like a great opportunity, but praying hard that God would give me wisdom and direction. Just want to follow His plan because it has proven to be the best!
Mack has been feeling pretty good and excited to get “life back” just a little. We took her to Build a Bear Workshop and to see the movie Underdog this past week. She loved it! She also dipped her toes in the pool and sat in the shade with her mask on. She tires easily, but it has been so good to see her perk up for brief moments! Her counts are holding which is awesome since we have been slowly taking her off the GCSF. Her need for platlets and blood has been spacing a little… come on bone marrow!!!!! I’m going to see if we can do her IVIG on Fridays with her cidofavir infusion so we’d just have to come on Tuesdays and Fridays, one less day here! Please continue to pray for Mack’s liver and kidneys. Her body has so many adjustments to make. Well, scrap getting out of here by ten, I guess they want to give her a magnesium bolus now which runs over 2-4 hours after her blood is done. Ugh! Better run and track someone down who knows whats going on. Keep PUSHing and PULLing. Much love, Amy
Tuesday, July 31, 2007 7:37 PM CDT
*****Thurs 8-2-07 8pm***** Just wanted you to know Mack's counts were still good and her GCSF was changed to every third day. I believe if they stay "up", they will take her off of it next week. Hooray! We are trying her off the IV fluids and started her on oral supplements today. Please pray for metabolic stability. That all of her electrolytes remain normal and that she continues to eat and drink well. Also, prayers that the oral supplements don't make her nauseated or give her diarrhea. Very exciting to put her to bed tonight without having to "hook her up". On the down side, Mack's liver numbers were beginning to climb again which we suspected would happen after switching her antifungal medication. They re-started her on Actigall to help protect her liver. Please continue to pray for protection of her kidneys and liver. I am so proud of our champion pill taker!!! I think she takes about 15 pills twice a day! HUGE horse pills... pretty impressive for a four year old! "Thank you Lord for your mercy in Mack's ability to swallow pills!" I don't know how we'd get all this down her if she hadn't learned to take pills. What a gift! Keep PUSHing and PULLing! Much love, Amy*************
PS Beth... I LOVE the red car, SUPER cute!!!!
Mack's clinic visit today was pretty uneventful. "Thank you Lord!" Her counts continue to climb... WBC was 4.7 and ANC was 3900. Hoping to change her GCSF to every third day if her counts remain good this week. Her blood pressure has been better since starting the clonidine patch. Her electrolytes are pretty good, but she keeps losing her potassium and phosporus some where! Because of the need to supplement, she continues on IV fluids at night. The adenovirus continues to linger and we ask for prayers for healing of this pesty virus. Although Mack has no symptoms, and has tolerated the virus well, she will remain on the weekly cidofavir and weekly IVIG until this is gone. UGH!
Weaning the steroids is exciting, but rough. She's so tired and we long to see that sparky personality return. We are grateful for the glimpses we see when she is interacting with her sisters. Her puffiness is beginning to decrease, but we have a LONG way to go.
Still working on hiring an au pair and asking prayers for the perfect fit to be found for our family. I can't believe how fast this summer has gone by! The insurance issue remains a challenge. I can't pursue looking for a job with benefits until I know we can take Mack back to Chicago which may be months. Its overwhelming, but I just continue to keep it in an open hand, praying that God will provide as He always has!!!! AND grateful that we have things in place here in Ohio!
Thanks again for continuing to follow Mack's progress and walk with us on this very long journey. We are so thankful for each and every one of you! Sending our love, Amy
Wednesday, July 25, 2007 8:17 PM CDT
Thank you AK Steel and the Leukemia Lymphoma Society for an amazing night at the ballpark! We had such a fabulous time, and we are still running on a high from the night. Or maybe its just all the sugar from the incredible dessert cart! You guys went above and beyond to provide a very special night for us... one that we will always remember! The girls have been sporting their AK Steel gear, along with their Reds apparel and still talking about how much fun they had. We are so greatful for your generosity and the love that you so graciously showered us with! What an awesome group of friends! Please, please keep in touch as YOU'VE impacted our lives. Hey, Maybe Mack could do some advertising for you guys... she is "tough as steel"!!! (posted some new pics in the photo album)
Mack's clinic visit yesterday went well. Her ANC was 1900 and her WBC was 2.4. They started her on a new blood pressure medication and we are hoping this will help. Going to talk with the docs tomorrow about switching her antifungal medication to something oral. If her counts are good tomorrow, we will try switching her GCSF (bone marrow stimulant) to every other day. Please continue to pray for her bone marrow to recover fully. Mack continues to need platelets every three days and blood every week. No one can predict how long it will take for her body to produce enough so that she no longer needs transfusions. But with as slow as everything else has been, the docs said it could be six months to a year. UGH! I was not prepared to hear that! Tomorrow will be another long day of transfusions and Friday again for the antiviral only to go back Sunday for the eternal IVIG infusion.
We totally splurged today and took Mack to the movies and out to lunch. It was one of those, "lets just live and trust God to protect us" kind of moments. She was so excited to see Ratatouille! And it felt incredibly good to do something fun together as a family.
Looking forward to having our friends from home visit this weekend. There may be some tension in the friendship on Sat. night when we go to the Cubs/Reds game! Much to everyones dismay, I now know I'm a trader... I will be cheering for the Reds. :-)*****disclaimer: its really NOT all about Nick Lachey***** hahaha!
Believe it or not, today is day 71 post transplant. The days are definitely going faster since Mack has been out of the hospital, but it just seems like such a long haul ahead. Please continue to pray for healing of Mack's marrow, production of an abundance of healthy cells, protection of her kidneys, liver and heart and protection from all infections. Also prayers for the perfect au pair to be found to help with the girls at home and continued provision for our family during the long seperation ahead. You guys have made it possible for us to hire an au pair with all the fundraising you have done. I praise God everyday for the way He has used you all in our lives! Thank you for everything and everyway you continue to love and support us! Sending many hugs and much love to you all, Amy
Monday, July 23, 2007 1:38 PM CDT
COULDN'T RESIST.... 
GO REDS!!!
***just a clarification, while we enjoy summer activities, Mack is still confined to the apartment. The environment is still risky to her system and poses too great of a threat to her body. She's coping pretty well, but is often disappointed that she can't tag along. Also, we just found out that we will never be able to meet the cord blood donor. I guess because they are still children, no contact can be made to protect the donor child. Major bummer! Mackenzie has two different DNA's... her blood contains solely the DNA of the donor, but her hair and her saliva still remain her own DNA. Thought that was an interesting fact.*********
Mack made it through her marathon IVIG infusion yesterday in a record 16 hours. Man... Sundays are LOOOONNNGG days!!! The girls have been loving all over their baby sister to the point that Mack gets annoyed. Like me, she is not used to all the comotion. Its a good, but difficult adjustment for everyone. Not much new going on here, which I'm trying to look at in a positive light. Mackenzie is feeling good and her counts are still pretty good, but not soaring with the GCSF (bone marrow stimulant) like one would expect. Normally, kids would be well off the GCSF by now, but in Mack's case they will keep her on for a while in fear that once she comes off, her marrow will slow way down and her counts will fall too far back. Can't wean the steroids fast enough!!! Looking forward to another decrease tomorrow. Between all the swelling from the steroids and all the black hair from the anti-rejection medication, I wouldn't even be able to recognize my own little girl if I hadn't seen her morph over these last six months. The girls had a hard time with the drastic change in Mack's appearance since the last time they were here. I think they were more shocked, not prepared for it.
Mackenzie continues to need platelet transfusion every three days and blood transfusions frequently. Her blood pressure has been creeping up, and I'm hoping to talk with the doctor tomorrow at clinic about switching her blood pressure medication. Please continue to pray for her kidneys and liver as they need rest, but continue to work hard. Also prayer for continued healing of Mack's bone marrow and protection over all the new cells. I have no idea when Mack and I will be able to go back home to Chicago. Obviously, her marrow is extremely slow and no one can predict how long it will take to fully recover to the point where she no longer needs transfusions. This could take A LOT longer than we were thinking or hoping. I guess at this rate I will just be happy to be home by Christmas. The whole insurance issue complicates matter too, which keeps us in Ohio. We are in the process of hiring an au pair to help with the girls at home since I will be in Cincy longer than we had anticipated. Once Mack is at a stable point, I'll begin looking for part time work to get Mack new health insurance which would enable us to go home, but keep our doctors here in Cincinnati for future follow up. We will be back and forth to Cincy quite a bit over the next several years.
Thankfully, we've acquired a wonderful group of friends here which have become a huge part of our lives. I find myself in a strange place because I can't imagine leaving here, but I can't imagine not going home either. Cincinnati Childrens is an amazing hospital and I've grown comfortable with the care they continue to provide to Mack. I can't imagine losing that security.
Outside all the hospital visits, we keep very busy. Heading to the Reds game tonight with sky box seats! I must admit I've become quite fond of the Reds... I know Katie... it's all about the Cubs!!! I'm feelin' like a trader, but I've even got Reds apparel now. Trouble! I'm checkin' to see when the Cubs are in town, you MUST visit!
Thanks again for the amazing love and support you all selflessly pour out to us during the calm and the storm. On my knees praying this next season of calm will be a long one!!! Sending my love to each of you, Amy
Tuesday, July 17, 2007 6:03 PM CDT
Just a quick note... the days are so busy, but I'm not quite sure what we are busy doing, they are just flying by. :) Macks counts continue to slowly climb... her white count was a record 2.4 and her ANC was a record 1620! And the big news for the week is that Mack is FULLY engrafted! This means that 100% of the cells tested in her blood stream carry the DNA of the donor. Praise the Lord. We were in Day Hospital today for some infusions and Mack's doctor decided to begin weaning her steroids over the next six weeks! We are so excited about this! It will be months for all the swelling to go down, but at least we're starting the process! She will feel so much better when she's not carrying around all that extra weight. Still find ourselves over at the hospital A LOT, but its ALWAYS good to go home at night! We'll be back Thursday for blood and platelets, Friday for her antiviral and Sunday for IVIG. She's a full time job and worth every minute of it!
Please continue to pray for protection and healing for Mack. It's amazing how easy it is to slip right back into our ways when things in life are just rolling along. Fighting to keep the perspective we have gained over the last six months! Steve's home working this week and the girls are in Minnesota with his parents. Everyone's coming back on Saturday. Gotta run, Mack's hungry. Thanks again for ALL you do! Much love, Amy
Thursday, July 12, 2007 0:12 AM CDT
Well, its 1am and its about the only free moment I have. This week has just flown by. We are LOVING being out of the hospital! It's been awesome to have a taste of "real life" again, but Mack's care remains involved. Seems I'm busy most of the day giving meds or going back and forth to the hospital for transfusions and infusions. We find ourselves back there about four to five days out of the week. Mack's counts today were a record high... her white blood cell count was 2.0 and her ANC was 1060!!!! Praising God for ALL He has done in our lives! Mack has been so happy at the apartment. She's looking forward to her sisters coming back in two weeks. The girls have been up north with my parents and loving life on the lake. Wishing we could all be there together! It's been so good to see Mack's little personality coming back. It was tough to see her withdrawn and quiet on top of all the bodily changes with the swelling... I was beginning to wonder where my little girl was. Seeing her personality shine has just renewed me! Amazing to think back on where we've been, all we've been through and wonder where this road will lead. I know we've come a very long way, but still seems like such a long haul ahead. I think I'm dreading the thought of Steve and the girls starting back to school next month and Mack and I having to stay in Cincy. Thankfully, we've made so many friends here who have become part of our family!
So sorry it has taken me so long to get an update to you. We've had many friends and family visit and have just been enjoying our time together. Please continue to pray for complete engraftment of Mack's new marrow and continued production of healthy cells. Praising God for that baby girl who was born ten years ago and her family who donated life saving cells from the umbilical cord with no idea of how they would impact another family. I look forward to the day we can meet this little girl. I believe it is two or three years before information can be exchanged. Also, continued prayers for protection from all infections and healing of Mack's adenovirus. And as always for complete healing of our precious girlie. Love you all more than you know... Amy
PS Heres a you tube video of Mack leaving the hospital
Tuesday, July 3, 2007 4:11 PM CDT
*****July 4th 6pm UPDATE***** I don't think there are words that can explain how wonderful the last 24 hours have been. On Monday, Mack was so fired up to be discharged, but yesterday morning brought many tears. She was sad to leave her "family" at the hospital and grew very attached to her room and her hospital bed. It was even hard for us to say goodbye. But when the time came to walk out the door, it was overwhelming. Mackenzie was waving bye to everyone and marching on! When we got in the car, I felt like we were breaking probation or something. It was so strange to see Mack sitting in the backseat. She kept saying "evwething looks diffwent". I don't even know if she remembers what things looked like when she was admitted, but it was January... it was winter. Just to show you how small Mack's world has become, when we walked into our apartment, she yelled, "holy moly, dis pwace is huge!!!" I don't think she sat down all evening. It's been great to see her up and about. The last three weeks or so, she's pretty much stayed in bed. Home health delivered mass amounts of supplies... brought me back to the old days at home. It was so strange going to bed knowing we didn't have anything to do today. We all slept great! It's raining today, but feels like the sun is shining brighter than ever! My heart is overflowing with joy!!!! Tomorrow Mack has some labs to be drawn and then Friday we'll be back at the hospital most of the day. Please continue to pray for engraftment and production of healthy cells! So grateful for every one of you!!! Happy 4th of July!!!! Much love, Amy********
Independence day has a new meaning for our family and it's come a day early! WE'RE GETTIN OUTTA HERE!!!!! Mack's counts remain low... her ANC was 270 today. But after some wheelin' and dealin', Mack will be discharged after her IVIG infusion is done around 7pm tonight! Feelin' like I could sell sand in the desert right now. :-) And feelin' like we just won the lottery! I'm so stoked! Praising God for this moment, humbled by His love and faithfulness, and moved to tears by His power and authority. It's been six long months since Mack's stepped foot outside these doors and many doctors are standing in amazement that we are leaving with new healthy marrow!!! Thank YOU Jesus!
Although Mack's being discharged, her care is still involved. She has eleven oral medications, several IV meds and IV fluids which will only run during her sleeping hours. We will be in the Day Hospital every Tuesday and Friday most of the day for infusions and transfusions. They expect her to be readmitted with fevers and so forth. And we will need to stay in Cincy until October at the earliest.
Please continue to pray for Mack's new cells to fully engraft and for her counts to continue to rise. Also, continued prayers for protection from infections as she is exposed to a new environment. Protection of her organs as they try to process all these medications and complete healing of her little body! Thank you, thank you, thank you for your relentless support for our precious little girl! Keep PUSHing and PULLing we made it out of these four walls and now we need to make it back to Chicago! Much love to you all, Amy
Saturday, June 30, 2007 3:02 PM CDT
Back in Cincy! That was a quick trip, sure wish I had more time at home. It was great to see my house and all the changes in the area since I've been gone. My bed felt horrible...crazy, I know, but I guess I'm used to sleeping on an aerobed or the hospital pull out. Mack and Steve survived although they did have to switch rooms while I was gone. I guess after 45 days in one room on the BMT unit, the hospital does some deep clean to the room and even though discharge is on the horizon, they still wanted us to move. So Steve took down all of Mack's pictures, packed and moved down the hall. It seems so sterile in here, but we are hopeful Mackenzie will be released some time this week, so it doesn't make sense to put everything back up on the walls. Mack's white blood cell count was 0.7 and her ANC was 340 today. Slowly approaching the magical "500" number to get our ticket out of jail. :-) Monday is still a slight possiblity, but that would mean Mack would have to hit 500 tomorrow and stay above that on Monday. Her ANC has to be above 500 for two days, so it will most likely be later in the week. Home health came today to go over all the home infusions... and Steve took ALL of Mack's prescriptions to be filled... there are ELEVEN! Mack's insurance has run out and we've got more glitches to get ironed out with medicaid, so please continue to pray for continuous coverage without and delays in the process. This definately complicates things as far as getting back to Chicago. Prayers for wisdom and guidance as we contemplate a move to Cinci or a job for me in Chicago to get Mack new health insurance. Oddly enough, I'm not even the least bit stressed out about it. I just know that God will provide. Continued prayers for increased blood counts, engraftment of the healthy marrow, production of healthy cells and protection from all infections. Really not much going on here other than the usual hanging out and waiting for those pokey counts!!! Thanks again for your continued prayer... we are so grateful! More tomorrow, anxiously waiting to type "WE'RE OUTTA HERE!!!" Much love, Amy
Wednesday, June 27, 2007 5:45 PM CDT
Just a quick note to let you know that Mack's ANC was up again today for an all time high of 210! "Thank you Lord for the encouragement we asked for!" For the first time, the big "discharge" word was brought up by the docs. If Mack's counts continue to rise, they are hopeful for a Monday discharge. Remember, this is just a doctors "guess". God ultimately has the perfect time planned for her to be released from the hospital and we will wait on Him! Keep praying for more healthy cells to be produced and healing of Mack's bone marrow!
I'm leaving tomorrow morning to drive back home for the night. Kali needs to go to the orthodontist and I'm desperate to get my hair cut! I'm turning around and driving back on Friday, but the girls will head north with my parents to their cottage in Wisconsin for two weeks. I'm sad they are leaving already, I feel like they just got here, but I know they will have a blast water skiing and tubing and swimming. The timing will actually be good if Mack is indeed discharged because it will give her an extra couple weeks for her immune system to grow stronger before being around all the girls and the commotion. Not much else happening around here. I can't even imagine sleeping in my own bed tomorrow night... it has been almost six months! Thanks again for all you guys do for us and for all the ways you continue to love us and support us. God bless you all! Much love, Amy
Tuesday, June 26, 2007 8:44 AM CDT
Well... things remain status quo. Mack's counts are soooooo pokey, but her ANC has remained above 100 for two days now. The doctors say it will be at least another two weeks. You would think after 153 days here, 14 more would seem like nothing, but it is just so overwhelming for some reason. We are beyond ready to get out of here!!!! Mack is feeling "ancier" than ever and I've been struggling with a bad attitude. Feel like we're under attack again! Things that I never noticed before, now annoy me to no end. I don't want to park in the parking garage and wait in line to have my ticket validated, I don't want to take 2 elevators to get up to the floor, I don't want to be "buzzed" onto the unit, I don't want to have to check in with security after 8:30pm, I'm tired of people telling me what, when and where I can eat. I'm tired of this slow internet connection that constantly drops my entries, I'm tired of not being able to go to the bathroom when I want to go. I'm tired of waiting an hour for food to arrive. I'm irritated with the patient refridgerator that is always jammed packed with food... everytime you open the door, stuff falls out and you have to take everyones food out to find your own burried in the back somewhere. I'm sick of this small room and I'm burned out on this entire routine. The choice remains mine to put a smile on my face and strive to find happiness and contentment in this moment, but for right now it just feels good to vent. Don't worry, I won't stay at this low... I know it can't change the situation and only will make the days more miserable. I'm still learning how to use the most powerful tool available to mankind... our brain. So much of life has to do with choices. And even though its hard to choose happiness in the midst of our situation, it is still possible. We just need to be aware that the choice is available and it takes effort. Otherwise, our flesh takes over and all those negative emotions prevail. Ok, see, I'm feeling better already. Not much on the agenda... there are so many things to be grateful for and therefore I will refocus on those things. Mack feels great! She's eating good, her adenovirus is nearly gone, her labs are stable and God's grace is abundant! Please pray for encouragement of increased blood counts, and peace and patience for me. As for Mack... our prayer requests remain the same... healing of her bone marrow, production of lots of healthy cells, protection of her kidneys and liver, heart and lungs, protection from all infections, permanant remission and the reality of "DISCHARGE" in the near future! Keep PUSHing and PULLing, you are carrying us right now! Much love, Amy
Saturday, June 23, 2007 7:18 PM CDT
This week has gone by so fast. Mack has been having a great time hanging out with her cousins, aunt and uncle! Steve and I have basically had the week off as my brother and his wife took over hospital duties. It has been wonderful! Hoping and praying that the end of this hospitalization is near. Mack's ANC was 200 today!!!! It has to be above 500 for two days. Praying tonight that there is a rise again tomorrow, despite the known up and down pattern. It's almost unbelieveable to me that she has been inpatient for nearly six months!!!! What a celebration it will be when she is discharged and an even bigger one when she walks through our door at home!!!
We've been busy all week doing "fun stuff"... of course, anything outside the hospital seems fun to me! The more I'm away, the harder it is to go back. Please continue to pray for bone marrow recovery and healthy cells. Also specific healing and protection of her kidneys and liver as they are so over worked!!! What an amazing journey... you are all such a HUGE part of our lives! Love you more than you know! Much love, Amy
Wednesday, June 20, 2007 7:37 PM CDT
Just a quick update to let you know we are doing great. Mack had an ANC of 90 today and her WBC was 0.5 Thats a record for her :-) Docs say after her ANC hits 500 for a couple days they will let her go to the apartment. Come on bone marrow!!!!! She is so fired up about her counts, its hilarious to hear her talk about it. The girls and I had an awesome time at Kings Island. It was perfect weather and there were no lines. Amazing! You could literally just stay on the ride and ride again many times. All the kids were fearless and even Lindsay rode ALL the coasters... yes, I was having my own arrythmias. Probably not the smartest thing, but we were just living and trusting in His provision for the day.
Still asking continued prayers for Mack's bone marrow to recover and counts to rise. Also for protection from all infections and protection of her kidney and liver function. Lastly for peace and patience for us all. What a celebration it will be the day she walks out of those hospital doors!!!! Keep praying! More tomorrow. Love you all, Amy
Sunday, June 17, 2007 7:36 PM CDT
What a weekend!!!! The girls and I had such a great time in Tennessee! I don't know if its because I've been couped up for so long, but everything about the world seemed bigger... more beautiful, more colorful, more wonderful! The girls had a great time tubing and boating in the Kentucky river and they couldn't be more proud of all the fish they caught. It was so hard to come back to the hospital setting this evening!
Steve and Mack survived the weekend although Mack says "dad doesn't pway 'kitchen' verwy good" She's still basically has no counts. Her white blood cell count was 0.3, and her ANC was 20. They counted 25 cells today. It's been 145 days since she was admitted!!! Looks like it will be weeks before she will be discharged. My brother, sister-in-law and the kids are coming down tomorrow and spending the week with us. Mack is totally fired up to see her cousins. Sherri and I are going to take the kids to Kings Island on Tuesday and Steves hoping to get out on the golf course if Dave will play with Mack.
Continued prayers for healthy blood cell production, protection from infections and protection of her kidneys and liver which are working so hard to metabolize and process all the medications she is on. Come on bone marrow!!!!! We are all so anxious to get out of these "four walls"!!!!! Thanks again for your continued prayers and encouragement that has been such a HUGE support for our family! We love you all so much! Keep PUSHing and PULLing... we're getting there! More tomorrow. Much love, Amy
Thursday, June 14, 2007 3:07 PM CDT
Just a quick update to let you know all is well here. We are still running on the excitement from Tuesday. Mack continues to feel great and has loved every minute of having her sisters here. She still has no counts, but they are coming! The cord blood is just slow to engraft. Continued prayers for protection and healing over Mackenzie. Also, this will be my last update until Sunday night. The girls and I are headed to Tennessee to camp for the weekend. Should be very interesting, but we are all excited about the adventure. And I'm so excited to be away from the hospital setting for a few days! Steve will be holding down the fort, prayers for stability and patience for Steve. The four walls will be tough for that long of a time without a break. Clearly, I won't have internet access and the cell reception is very limited. Praying for safety and fun along the way! Thanks again for your continued prayers. Mackenzie is so excited about her counts coming in!!! She can't wait to be discharged. We love you all so much. Look forward to giving you lots of good updates on Sunday night! Much love, Amy
Tuesday, June 12, 2007 4:04 PM CDT
We knew the healing was done in the spirit... but today, the healing is done in the flesh!!! Praise the Lord, you have just been a part of a miracle! Against all odds, statistics and every doctors prediction, the leukemia has PERISHED!!!!! There was no leukemia found in Mack's marrow today and healthy cells were seen emerging. Engraftment is occuring and it is just a matter of time before Mack's counts come up. God is good! "The healing is done!" He has spoken!!! We are completely floored!!!!! There are no words to describe the power and might of our great God! His faithfulness is mind boggling! We still have a long way to go, but we are greatful that the path is still before us and it hasn't abruptly ended. Continued prayers for protection from infections and protection of all Mack's organs as they have so much to process. And prayers for the new cells to continue to engraft and multiply providing new life in these new cells!!!! Wow, my mind is going in so many directions right now. How can I not fall to my knees and praise the Lord? Join me in praising Him! More tomorrow. Much love and gratitude, Amy
Monday, June 11, 2007 7:39 PM CDT
****10:45am UPDATE**** Just wanted you to know that Mack did great with her aspiration this morning. Amazingly, we have no worries today, no anxieties or fears. In the past, these days have proven themselves to plague us with anxiety as we wait for results. Not today. The peace we carry is clearly from God. Believing in His spoken word to me, "the healing is done". Now, we've done all we can do, the rest is up to Him! Should have results late afternoon. Thanks for your continued prayers! Love, Amy*********
So sorry to leave you guys hanging, but as usual, there has been no change. Mack still has no counts. Rounds have been frustrating and discouraging for me everyday... I told them to just say, "no changes" and move on to the next room. I think they sensed my frustrations but still wanted to go over all the numbers.... or lack of numbers. As usual, God showed up to give me just the encouragement I needed. He brought a new friend into my life whos on fire for the Lord and her daughter whom has already bonded with my girls. We all spent the day at the pool together and prayed for Mack. ALSO, there has been some encouraging things here... Mack's adenovirus is nearly gone... her level was 6500 and is now down to 600! We want it to be zero. Also, she had an ultrasound of her neck again today to evaluate the clot in her jugular. No one was expecting any change, but if the clot was stable with no change, they would discontinue the blood thinner shots. The report read, "Significant reduction in size of the intraluminal thrombus within the proximal right internal jugular vein. The minimal residual thrombus causes mild narrowing of the lumen, although the vessel is patent throughout its extention." WOW and WOW!!!! Praise God, not only is the clot stable but significantly improved!
Steve and the girls ended up coming down on Sunday. I called Saturday night and told them to just come, I couldn't stand it another day. It has been so good for my spirits to have everyone together. My girls grew up over the last five months! Everyone looks older, Lindsay's texting boys, Kali got her braces off, Taylor got her hair cut, Lexie...well, Lexie's still Lexie! I've missed out on a lot! And, its quite an adjustment getting used to all the activity again. I can't even count how many times I heard, "mom, mom, mom..."!
Tomorrow is a HUGE day for Mack. She is having her bone marrow aspiration at 7:30am. Praying and believing the leukemia has PERISHED and the doctors will confirm that tomorrow! And also praying that some healthy cells would be present to indicate engraftment is on the horizon!!!! Come on bone marrow!!!! We will have some results back tomorrow, but the biopsy results won't be back until the following day. Ok prayer warriors... lets go! This is it! Keep praying, keep praying!
Thanks for all the encouragement and for holding up my arms when I am weak! I love you all more than you know! I will update tomorrow as soon as we hear news, it won't be until late afternoon, early evening. Spread the word. Much love, Amy
Friday, June 8, 2007 1:39 PM CDT
Day 135... 24 days post transplant and STILL in a season of waiting. When will it ever end? Ugh! Praying harder than ever for those cord blood cells to engraft and start to multiply. Mack has a virus called adenovirus of which she has absolutely no symptoms of, but they found it in her blood work. She started on a new antiviral medication that is another "ugly" drug. She will get this once a week for at least three weeks. Praying that this new med will clear the infection for Mack. Between that and the cellulitis which she had in her arm, any active infection can affect engraftment and can hinder us from seeing the cells we would like to see. A bone marrow aspiration has been scheduled for Tuesday (day 28) to see if the leukemia is playing any role in the late emergence of cells. Please join us in praying that every leukemic cell has PERISHED and the aspirate reveals healthy marrow. Unfortunately, the aspiration will not give us much info about engraftment... that will only be known in time. Continued prayers for cell ressurection and cell multiplication!!!! On Tuesday Mack will also have an ultrasound of her neck to check on the status of the clot in her jugular. If it appears stable, she will be able to come off the blood thinner shots. That would be awesome!!!! Praising Him for Mack's perservence which has proven to be stonger than ours. She feels great, eating great and continues to play all day long. Steve and Lexie both have bad colds. They were going to move down on Sat, but now they are hoping for Monday. Can't believe I haven't seen my girls in five weeks!
I feel kinda numb today. It's raining and storming outside, the walls continue to close in on us and we can't see the light at the end of the tunnel. Pray as the Lord leads you. Thanks for continuing to carry us in prayer. Much love to you all, Amy
Wednesday, June 6, 2007 9:40 AM CDT
Well... there's not a whole lot of news to report. Mack's bone marrow remains very sluggish... ten cells yesterday and five today. The waiting is excruciating, but I'm so thankful for all the mercies in the waiting. Mack continues to feel great. To think of all she's been through in the past five months, to think that she just endured a bone marrow transplant... you would never know it if you walked in this room. She hasn't been hooked up to IV's for days now. She's up and about playing as usual... somedays I believe she thinks she's at a resort. Oddly enough, I think the whole process has been harder on all of us than it has been on her. And I often wonder if all of this really has anything to do with Mack and her leukemia. All I see are the things God is teaching us through these trials and the way He continues to mold and shape us. Praying that we remain "pliable" so He can continue to do His work. So easy to become rigid and hard as we are so stressed and stretched over time, but I know that will surely end in destruction. Keeping our lives open to Him and allowing Him to do His work will ensure beautiful results... and we continue to ask that Mack will remain a part of the beautiful family portrait He is painting for our family. Come on bone marrow!!!!!
Please continue to pray for engraftment to occur, for healthy cells to multipy, for healing of Mack's marrow and for a timely discharge. Also, praying for patience for our family and open hearts that allow God to do ALL He needs to do in our lives... in HIS time.
Steve and the girls are moving down on Saturday. Lexie's got a bad cold again, so I'm not sure how that will play into those plans. Mackenzie is soooooooo excited to see her sisters. She asks for them everyday and is counting the days to play with them.
More tomorrow. Much love to you all, Amy
Monday, June 4, 2007 10:07 AM CDT
Well... bummer! Only two cells counted today... one was a monocyte and one a lymphocyte. No white count or ANC. Trying not to let the numbers discourage me, but I thought I saw a glimmer of light at the end of this road and now its gone. Choosing to be happy and content and wait on God's timing. Praising God for Mack's appetite and ability to eat... yes, she at 22 chicken nuggets yesterday! There is HUGE mercy and grace in that simple act!!!! We pushed the bed against the wall and she road her bike in the room. She was laughing hysterically as she road circle after circle. I was worried she would get so dizzy that she'd fall off the bike. We are doing all we can do to keep busy in this small room and pass the days. Five more days until Steve and the kids get here. Still hoping Mack's discharge will follow shortly after! He makes ALL things possible! Continuing to ask Him to stimulate her marrow and ressurect her cells creating abundant life within Mack. But at the same time, being patient and waiting for His timing. Also praying for protection of Mack's kidneys and liver and for His shield of protection to embrace her and protect her from all germs. Come on bone marrow!!!! Much love, Amy
Sunday, June 3, 2007 10:08 AM CDT
Lamentations 3:19-26 reads:
I remember my affliction and my
wandering,
the bitterness and the gall.
I well remember them,
and my soul is downcast within me.
Yet this I call to mind
and therefore I have HOPE.
BECAUSE of the Lords great love we are
NOT CONSUMED,
for His compassions NEVER FAIL.
They are new every morning;
great is your faithfulness.
I say to myself, "The Lord is my portion;
therefore I WILL WAIT FOR HIM."
The Lord is good to those whose hope
is in him,
to the one who seeks him;
it is GOOD TO WAIT QUIETLY
for the salvation of the Lord.
(thank you Michlyn... I still carry that little black bible with me everywhere and hang tight to that verse you gave me.)
Yesterday we saw what may be the early signs of count recovery... some monocytes. Amazingly, I had several people write saying God had given them an image and I had not posted an entry yesterday... "cells boiling over", "the breath of God... breathing life into Mack's cells", and "cell ressurection on the third week." Today, the cell progression has continued. It is still slow, but on the rise. Come on bone marrow! Praise God for cell ressurection!!!
Mack continues to feel great and eat well. Doctors said we usually aren't waiting for counts to be discharged, usually we're working on eating and taking meds orally. As soon as Mack has counts, she will be ready for discharge. Her ANC must be greater than 2,000 for three days before they will stop her GCSF (bone marrow stimulant). Shortly after that, she would be discharged. Her ANC was 40 today. Excited to learn that Mack will be able to be discharged to our new apartment and not directly to the Ronald McDonald House. So exciting to think about having our whole family together again! Please continue to pray for Mack's new cells to flourish and multiply providing health and healing. Also protection over all her organs... specifically her liver this week as her liver enzymes are high and continue to creep up. And praising God for all His mercies, His blessings, His gifts, His answers, His plans, His faithfulness, His power, His love, His grace, His compassion, His comfort, His strength, His counsel, His goodness, His gentleness, His guidance, His holiness, His kindness, His knowledge, His understanding, His wisdom, and HIS WILL!!!! Got my praise music on this morning with tears welling in my eyes that are fixed on my Savior! He is so amazing!
"There is none like You
No one else can touch my heart
like You do.
I could search for all eternity long
and find there is NONE like YOU!
Your mercy flows like a river wide
and HEALING comes in your Name.
And helpless children are safe in
Your arms.
There is none like You!"
Keep PUSHing and PULLing and praying for CELL RESSURECTION... this is the word He has given us after He asked us to command the leukemia to PERISH! With love and gratitude for ALL you guys have done, Amy
Friday, June 1, 2007 1:09 PM CDT
Oh you guys have no idea how much you have encouraged me and helped me these last few days! Thank you! Interestingly, my devotional today reads:
.....I implore you to not give in to despair. It is a dangerous temptation, because our Adversary has refined it to the point that it is quite subtle. Hopelessness constricts and withers the heart, rendering it unable to sense God's blessings and grace. It also causes you to exaggerate the adversities of life and makes your burdens seem too heavy for you to bear. Yet God's plans for you, and His ways of bringing about His plans, are infinitely wise!
Wow, couldn't be more true. I had fallen into the "I can't do this anymore, I wanna quit, this isn't fair, why do we have it so difficult, I deserve to have some enjoyment in life, now go find it trap" I was totally blinded to His amazing grace and blessings in the fact that Mack has not suffered one day in the past five months despite ALL that has been done to her. Instead of submitting, I began taking control and focusing on myself. This is destructive to the soul! I think a lot of it boils down to contentment. It is choice to be content. It is not something you can achieve or accomplish by works. And if you don't make the choice to be content, naturally the grass will ALWAYS look greener on the other side of the fence. You will find yourself chasing after things that promise nothing unless your eyes are set on the Lord and you decide to be content with whatever your circumstances are! And if you don't make a concious decision to be content, the default is the opposition. Your focus will be on all the things you don't have instead of the amazing gifts and blessings that have been bestowed on you. Our society screams at us every day to achieve more, accomplish more, aquire more, and accumulate more. This is a provocative world for discontentment.
So today, there is no change, but we are praising God for Mack's spirits, her current "health", and the fact that we've already overcome 128 days here. No counts yet, and we remain in a season of "waiting". But I am choosing to be content here. God's path is so much better than the worlds, even when it is confined to these four walls. You CAN achieve happiness and contentment, peace and joy despite your circumstances when your eyes are on Him and you are following His ways. Any other way you go about it, you may get a "quick fix" and some temporary moments of satsifaction, but you'll grow weary chasing things that leave you empty. I am a walking testimony to this fact.
Keep praying for bone marrow recovery and protection of our sweet Mack. Love you all more than you know, Amy
Thursday, May 31, 2007 10:23 AM CDT
New morning, new day, no change, no counts. :-( I feel lately that satan has been lurking and louring me away from the Lord in subtle ways that I have fallen to. In my weakness and vulnerability from the mundane routine and stresses of this place, I had briefly taken my eyes off of Him and turned to worldly stuff in an attempt to get some instant gratification. I've grown so inpatient with all this waiting that I was desperate for something to take me away from this reality. The things of this world look so enticing and give you a "quick fix". That fix is gone faster than it came and it leaves you empty. I hate stepping off the path the Lord has set before me, but unfortunately as humans, we stumble and we always will. Thankfully, my gaze has been readjusted and my feet have been replanted. Amazing how things start to look different, better... even though the circumstances havent changed. Renewed hope and strength replaces disappointment and weakness. And you find yourself putting one foot in front of the other again. I've found that the quicker you can get yourself back on His path, the less distance you'll have travelled from it and the easier it will be to get on track. Praising Him today for His unwaiving love, even when we stumble.
Mack continues to feel well. The infection in the tissue of her left arm has not spread or gotten any worse. Please continue to pray for healing of this infection. I sense an increased awareness or anxiety in the doctors as we are on day 16 post transplant and haven't seen any sign of engraftment or recovery of Mack's blood counts. My eyes well with tears as I lay it all down before Him once again. A bone marrow aspiration has been brought to discussion which was not part of the original plan. The doctors are talking about scheduling one next week. Please pray for engraftment to occur and for the cord blood cells to take over and mulitply producing millions of healthy cells. Pleading with Him for healing, for mercy and grace. Love you all, Amy
Wednesday, May 30, 2007 4:15 PM CDT
Wow, every day seems to feel a little longer and longer. Its the same thing day in and day out. I've started to wonder how much longer we REALLY can keep doing this. I've been thinking so much about home lately and missing Steve and the girls more than ever. Mack continues to feel well and we praise God for His mercies! Still no counts and we ask that you continue to plead for those new cells to take over Mack's marrow and multiply, restoring it to health. She has a small area of cellulitis (infected, inflammed tissue) in her arm where the catheter was to administer her blood thinners so they started her on another antibiotic today. Thankfully, she hasn't had any fevers, continues to eat well and is up and about playing in the room. Her spirits amaze me. I actually get out of the room for a few hours a day and I'm going crazy, but she is just as happy and content as can be. This is a blessing to us! Sometimes all this waiting feels torturous, but I have to remind myself that things could be a lot worse. Trying to stay focused on all the things we are grateful for, but my humaness has been getting the best of me lately. Ugh! Thanks for keeping up with us and encouraging us to keep on! Don't know what we would do without you all! You do more than you realize and this journey would have been a lot more strenuous without you. Thanks! More tomorrow. Much love, Amy
Tuesday, May 29, 2007 10:04 AM CDT
Wow... can't believe its been several days since I've written. Crazy enough, there really is no news to share. Mack continues to feel great, but still has no counts. Yesterday her white blood cell was 0.5 and we got excited that maybe this would be the start of recovery, but today it is back to "0". Praying so hard for engraftment and healthy cells to emerge. The waiting is so hard and I'm desperate to get home and have our family together again. Keep praying for those health cells to multiply. More later. Much love, Amy
Saturday, May 26, 2007 11:20 AM CDT
Check off another day... still waiting for those counts. Grateful for each day that Mack continues to feel well, but becoming more and more anxious to GET OUT!!!! Ugh! Holiday weekends in the hospital are never fun! And we hold our breath and pray for Tuesday to be here as the "skeleton crew" covers. Praying for those new cells to engraft or as Mack says, "tome on cells, det comfy in your new home and start makin' babies!" She also chants, "Grow cells grow! Grow cells grow!" It must be the beautiful weather, school getting out, weddings and graduations along with vacation time that has me longing more and more to get out of these four walls... or it could just be that we've been here for 122 days now, not that I'm counting or anything. I'm definately struggling with patience again!
My mom is flying back in today after a week away and Steve is heading home tomorrow. I don't think he'll be back for two weeks :( He's got a lot going on to finish up the school year and pack everyone up to move down for the summer, along with arranging for our house to be cared for while we are away. The girls finished school on Friday, but will stay in IL with Steve for these last two weeks.
Please continue to pray for protection over Mackenzie... from all infections and good organ function, and for those cord blood cells to get in Mack's marrow and discover its the best home they've ever had! Come on bone marrow!!! Praying for good blood counts and discovery that the leukemia has PERISHED!!!!! Love you all, Amy
Thursday, May 24, 2007 11:26 AM CDT
Things here have been status quo. No news from us is always good news. Mack has been feeling good, happy and playful. Yesterday I had to make a run to Toys R Us to purchase a kitchen. Mack was missin the kitchen in the playroom so much that we needed to purchase her own. She has been loving every minute of doing dishes and cooking dinner. She continues to eat, but its always a challenge deciding on what to eat. Nothing tastes right to her. Still waiting for those new cells to engraft and multiply in her marrow. Sounds like it won't be for another week or two because cord blood takes longer to engraft than bone marrow stem cells. As usual, the waiting is difficult. Praising God for Mack's health today and continuing to pray for protection from infections, protection of her organs and healing of her bone marrow.
Still longing for discharge and ready to close this chapter of the book and move forward. Today marks 120 days inpatient. What a long haul! Keep PUSHing and PULLing, we feel a little stir crazy! Love you all, Amy
Tuesday, May 22, 2007 4:56 PM CDT
Well, I had a little escape from reality today... sitting by the pool at our apartment, with my laptop, cell phone, ipod and people magazine... all I needed was some fruity drink and I would have thought I was in paradise. (hahaha) The more I get out of the hospital, the more I want to be out. The days seem longer and longer and I'm getting "ancy". Just longing to start "living" again.
Thankfully, Mack continues to do well. She is actually off her IV's for 8 hours during the day and is loving every minute of being "free free". I think she's feeling "couped up" and continues to ask about getting out. She had an ultrasound of her neck today to re-evaluate the clot in her jugular vein. We are still waiting to hear back on results, hoping she may be able to come off the blood thinner so she wouldn't need platelet transfusions as often. Once again... no one knows quite what to do with the "clot" and the decision to treat or not treat falls into a grey area with differing opinions across the board. Please pray for specific guidance and wisdom for the doctors as He knows what Mack needs and doesn't need.
Yesterday Mack came off the morphine because she never really needed it and they are talking about taking her off the IV nutrition in the next couple of days if she continues to eat as well as she has been. She's surprising hardly ever in her bed. In this small room I thought she would just shut down and lay in bed all day, but she is busy, busy, busy. Talking about pushing her bed out into the hall for a day so she could ride her bike in the room. :-) She'd get really good at riding in circles. It sounds like we have another week to two weeks before her counts should begin coming back. Please pray for those healthy cord blood cells to engraft perfectly in Mack's marrow and for her body to accept it as if they were her own. Continued prayers for protection from all infections as Mack is so vulnerable now, and protection of all her organs. And I think we'll begin praying for a quick discharge from here... sound good?!?!?
Thanks again for all the love and support. You guys continue to amaze us in all the ways you carry pieces of this huge burden. Because of you and the grace of God, we are not crushed! More tomorrow. Much love, Amy
Sunday, May 20, 2007 4:39 PM CDT
I can't believe its Sunday eve... this weekend just flew by! I guess when you get out of this room and "live" a little, time goes by much, much faster. I had a great birthday... thanks for all the well wishes and to my friends who travelled to be here with me!
Mackenzie has been doing well. I can't believe its only been five days since her transplant. It seems like that took place months ago. Hard to imagine a minimum of 95 more days in Cinci!
Praising God today for Mackenzie's health. She continues to feel well, is up and about playing games and doing projects. Miraculously, she continues to eat and is without any pain. God is good!
Please continue to pray for protection and healing. Specifically praying this week that the umbilical cord blood cells engraft in Mack's marrow and multiply an abundance of healthy cells! Come on bone marrow! Praying we see healthy blood counts much, much sooner than expected!
We are longing to get out of the hospital. It is beginning to feel sooooo long... today is day 116.
Steve is here for the week and it is good to spend time together. Wishing we could all be home together as a family. Just another week or two before the girls and Steve move down for the summer.
Thanks again for all you guys do for us... we ARE so blessed! Much love, Amy
Friday, May 18, 2007 7:27 AM CDT
Ok, so I thought I was losing it a little being confined to these four walls, but I'm feeling much more sane after reading all the guestbook entries :-) You guys are hilarious!!! Thank you for making me laugh this morning.
Mack had a great day yesterday. She was really feeling well and played hard all day. Her blood pressures have been good and she has been eating better. Praise the Lord!!!! Amazing answers to prayers... keep praying! The days continue to feel very long sitting in this room day in and day out. Mack has developed a very creative mind and comes up with new places every day that she asks if she could go to. It started out with places in the hospital, like "tan I do to da gift shop?" "tan I go to da pwaywoom?"... slowing, as the days go by, she has begun asking for places outside the hospital as if that may increase her chances of us saying "okay". It started with, "tan I do to da wonald house?", then "tan I do to the apawrtment today?", then "tan we do to Fworida?" and yesterday, "Tan I do to Disneywand betause Ace said he'd take me dare." I think she's just testing out some manipulation techniques too see if she can pull them off in her teenage years. :-) She's one smart cookie despite the cranial radiation and all the chemo given in her brain!
Continuing to lay Mack at the foot of the cross, praising Him for all He's done and all He's going to do! More later. Much love, Amy
Wednesday, May 16, 2007 7:13 PM CDT
I'd chalk this one up to a pretty good day. Mack had a few big naps, but when she was awake, she was happy and playful. She's still interested in food, but not eating very much. Started back on IV nutrition tonight.
This afternoon, her blood pressure was high and so they've added two different blood pressure medications to her very long, long list of meds. It is overwhelming the amount of medications she is on. I am so grateful for the biggest gift we could have ever received before going to transplant... Mack's ability to swallow pills. I can't see how we could have made it through this if she couldn't do that. "Thank you Lord!"
She started back on the steroids today which she will receive a very hefty dose for 28 days and then hopefully, they will begin weaning them. I guess I better gear up for the mood swings. Hopefully, we'll benefit from the increased appetite side effect. She also started GCSF - the dreaded medication that stimulates the bone marrow to produce cells. Praying that she doesn't start spitting out those blast cells. She also got her eternal infusion of IVIG which she gets every other week. It's literally one infusion after another all day long.
Please continue to pray for stabilization of Mack's blood pressure, good urine output, protection of her kidneys, liver, heart, lungs, bowels and brain, tolerance to all the medications and blood products required to keep her alive and protection from all infections. Also praying for the new cells to engraft quickly and for her body to fully accept all the new healthy cells and multiply filling her marrow with health.
Also wanted to send a special thank you to Lake Forest High School for organinzing the triatholon for Mack. The love and support you have extended to Steve and our family has been so profound. From fundraising, to babysitting, to pooling "sick days" so Steve can be in Cinci with us, to airline tickets, donations, love, prayers, thoughts, cards and messages, you have blessed us richly. We are grateful for all the staff, students and their families who continue to support us in so many different ways. Thank you!
Well, better run, Mack's pump is beeping. More tomorrow. Love you all, Amy
Tuesday, May 15, 2007 5:11 PM CDT
***added some pics from today****
Just a quick note to let you know that the transplant today was very uneventful! Praising God for the family who decided to donate the cord blood from their baby girl ten years ago. Thanking Him for paving the way before Mack was even born and asking Him for continued protection and healing for our sweet Mackie.
Mack was blowing her party horn and asking "when da new cells gonna be hewre?" The transplant itself was a whopping 50cc's of umbilical cord blood... that's less than two ounces of precious life saving cells! After a five hour process of "thawing" out the cells and waking them up after ten years, they were pushed from a syringe into Mack's central line over about fifteen minutes. I knew it was going to be "uneventful", but I didn't realize how emotional it was going to be for me. Wow, the tears were flowing!!! We took a few pictures and a short video and hope to have them posted later today or tomorrow after I get a little "tech support"! Now we begin the process of waiting... AGAIN! It will take about three weeks for those cells to find their way into Mack's marrow and start reproducing. (those are some good specific prayer requests!) During those three weeks we've gotta fight off all infections and keep the kidneys, liver, bowels, heart, lungs and brain in good shape which is hard to do with all the drugs it takes to protect her. She's on anti-rejection, anti-viral, anti-fungal, antibiotics along with a whole bunch of other harsh meds on the body. Praying that the cells engraft quickly and multiply producing perfectly healthy newborn cells! Also continued prayers for any leukemia cells to PERISH! The reality we are faced with is that even after all this, relapse may occur. Trusting Him for all of her needs as well as our own needs! It is a long haul ahead!
After a long nap, Mack woke up and made a butterfly which she affectionately named "Buddie". We hung it from the ceiling and she was thrilled with herself. She seems to be feeling pretty good, but we understand that is about to change in the next few days. Amazingly, Mack's blood type will also be changing to "A positive" as her body takes on the new bone marrow. Thank you to all of our "A negative" donors who have supported Mack and helped her through these last four months.
Gotta run and get back to the room. Thanks for your incredible support for our family and your life altering prayers! We have been living on your prayers! More later. Love you all, Amy
Monday, May 14, 2007 2:11 PM CDT
I'll try again... this is the third attempt to post an update.
Thank you guys so much for all the mail you continue to bless us with. It was another one of those "canvas bin on rollers" kind of mail day and Mack LOVED it! She truly sparks up when she sees those packages coming. What a blessing that is for us, to see such joy in the midst of suffering. Thank you for continuing to let us know that you're here with us...I'm moved to tears when I try to express how it feels to be loved the way you all have loved our family and especially our little girl. Any word that comes to mind seems so inadequate. Maybe if you saw the pool of tears by the keyboard, you'd understand. Thank you!
Mack's having a pretty good day. She's sleeping right now, but tylenol/benedryl combo will do that to anyone. She was up playing with her animals a little earlier and looking forward to digging into some new things that came today. We are starting our prayer vigil tonight and have friends that will be camping out in the chapel for the night. Transplant will be at 1pm tomorrow. Please continue to pray that God would bless those cells indeed, but always remembering that the gift of life comes from Him not the cells. Asking Him to nurture those cells and help them to multipy, and take over her entire bone marrow. Continuing to ask Him to command the leukemia to PERISH and free Mackenzie, allowing her to enjoy a healthy life here on earth.
Thank you all for standing shoulder to shoulder with us for sooooooo long now! We are a great army TOGETHER! Love you all more than you know, Amy
Sunday, May 13, 2007 5:34 PM CDT
Today has been a long day. Mack needs lots of attention to keep her occupied and she began having mouth pain today. It was so strange, she was totally fine reading a book in bed and then started screaming and crying about her mouth hurting. She was clawing at her mouth and neck, screaming "I can't take it!" Fortunately morphine was the cure. She started on a morphine drip which has a special button she can push to give herself more morphine if she starts feeling pain. She likes the novelty of the button so we gotta keep an eye on her :-)
Now that the pain is under control she is back to playing mouse trap, computer games and climbing on daddy. She's non-stop chatter. "Thank you Lord, for your amazing grace today and for helping Mack get relief from her pain. Continue to let your mercy and grace rain down on Mack and flood this room. Place a shield of protection around Mackenzie during these vulnerable days when she has none of the natural defenses in her body that you designed her to have. Supernaturally give her body whatever it needs to endure these next weeks. Hold her liver, kidneys and bowels. Lord, I ask that You would do the work of her organs so that they may rest. Maintain their function and protect them from any harm. Almighty God, prepare Mack's body to receive these new cells on Tuesday. Bless each cell and command them to infiltrate Mack's marrow, engraft perfectly and fill it up with new, healthy cells. Lord, we ask you to speak the word "perish" to any cancerous cells that may be lingering around. Let them die and disappear quickly. Thank you Lord, for walking with us every step of these hard days. It is because of YOu, and only You, that we can get through this! Thank you for your love and faithful watch over Mack. Continue to craddle her in your arms and shelter her from any harm. There is no other place I'd want her to be. You are all she needs. I love you Lord. Amen."
Although tomorrow is considered a day of "rest", I don't know that it is a term I would have chosen. She will begin a new antifungal and antiviral medication to help prevent infections along with all her other meds and her last dose of ATG. ATG is actually obtained from horses...some type of antibody used to kill off any of Mack's own cells. It runs over 8 hours and its nasty. She had it yesterday, today and last one tomorrow.
Please continue to pray for protection of her kidneys, liver, bowels, heart, lungs and brain. Also, protection from infections, mouth sores or pain, and acceptance of the new stem cells and destruction of any and all leukemic cells hiding out. Continuing to praise God for bringing us to this point, for His constant care and for the 4 1/2 years we've had with Mack. Praying He will bless us with many more. Much love to you all, Amy
Saturday, May 12, 2007 8:51 PM CDT
Getting ready to head to bed, but wanted to let you know that Mack had a pretty good day... all things considering. I am in awe at the number of different medications Mack is on. Specific prayers tonight that tomorrows last dose of chemo would rid Mack's body of any microscopic, undetectable to man, remnants of leukemia. Also, consistent prayers for protection of Mack's kidneys and liver. I guess after the transplant it is just a waiting game to see if they will hold up. Tough stuff to grapple with! Also, Mack started having watery diarrhea today which brings back so many awful memories from when she was first diagnosed. Praying that God would somehow heal and protect her bowels and spare her from ALL side effects from these harsh drugs. Continued prayers for protection from mouth sores and a health appetite. She wants to eat and asks for food all day long, but then when you bring it to her, she doesn't want to eat it. But BOY... you better bring it!!! :-) I can see her losing weight by the day and that is hard to watch. Unless her appetite picks up in the next couple days the plan will be to start her on IV nutrition a day or two after her transplant.
She was up and about this afternoon... played Mouse Trap with me and loved it! Actually, she didnt want to play the game she just wanted to keep setting off the trap. She also played some games on the computer.
Today was so busy with so much care to give and tomorrow will be the same. Praying with all that is within me, that tomorrows dose of chemo will be the last dose our precious girl will ever have to endure, that it will be the most potent in ridding her body of this dreadful disease and that by His grace and His powerful Hand, healing will occur.
Keep PUSHing and PULLing...we need you guys! More tomorrow. Love, Amy
Friday, May 11, 2007 3:58 PM CDT
Well we made it through radiation. Of course, Mack will still feel its effects for the next three weeks, but at least the treatment is done. Now we gear up for two big days of chemo over the weekend. Praying specifically for protection from mouth sores, vomiting and diarrhea and protection of her bladder, along with a God-given healthy appetite! Continued prayers for all the "usual concerns" too!
Mack continues to feel pretty good. She looks great and is up and about. She's not happy about the fact that she can't leave the room. She keeps asking to go to the play room and wants to ride her bike, but now that we are on the BMT unit, she is isolated to her room. :-(
We are planning on having a 24 hour prayer vigil in the chapel here at Childrens from Monday morning until Tuesday morning. There is a group of us who will be camped out for the night in prayer. If you feel led to join us at any time of the day or night, please feel free to just show up and bring anyone with you who would be interesting in praying for healing for Mackenzie and for a successful transplant. We will conclude our prayers with a little ceremony to bless Mack's new cells. I'm so excited about this opportunity. God continues to do amazing things every single day and we are so grateful for His presence and His faithfulness in caring for us and providing for all of our needs. My heart has grown so much over the last four months and I've learned so much from all of you. Thank you! I often wonder what God is preparing me for in the future because He has taught me so much through all of trials with both Mackenzie and Lindsay.
Also, wanted to thank Debbie for the great thoughts on the word God gave me to use in prayer for Macks leukemia...PERISH
P roctect her little body from all side effects
E ncourage her and her faithful family.
R id her body of all leukemic cells – FOREVER!
I gnite the healthy cells to multiply and flourish!
S trength for her body to recover.
H EAL MACKENZIE!!!!!
Not much else going on here. My mom headed home for the weekend and Steve is flying in late tonight. The girls will hang tight at home for the next week or so. I can't believe they only have two more weeks of school. I remember thinking there is no way they will be able to finish out the school year and I thought we'd have to bring them down here for the year. God is good! Our apartment has been a HUGE blessing already and it feels so good to have a place to call "home". There is a local foundation here in Cincinnati who will be helping with the cost of rent. Everytime I turn around God is there!
Just want to encourage you all to continue to pray. Your prayers are having a direct impact on our lives and we are forever grateful for your devotion and dedication to our family. We have a long, long way to go.... but we've also come a long way already...TOGETHER!!!! Love you all, Amy
Wednesday, May 9, 2007 8:29 PM CDT
Mack had pretty good day today although the lousy fever keeps popping up here and there. She's done well with her radiation treatments and being sedated twice a day, not being able to eat until the afternoon... she is a trooper! I've been enjoying the little things she has been saying lately. Tonight her random comments went something like this..., "I never donna forget my sisters." "I'm so gwad Jesus died on da cwoss for me." "I can't wait til my weukemia goes away and we get to go home and be a famiwy." "I never donna give up, right mom!?!" "Do you think Ace shaved yet?" "I dettin' sweepy."
Same plan for tomorrow... radiation at 6am and 2pm along with her long, long list of medications. Please continue to pray for protection, protection, protection...of all her organs, from all infections, from anything threatening her little body. Continued prayers for healing and destruction of all cancerous cells! Still praying for the leukemic cells PERISH!
Thanks again for all your love, your incredible support, you willingness to stick together and your powerful prayers! Love you all so much, Amy
Tuesday, May 8, 2007 8:25 PM CDT
We seem to be settling in our new room, but it is a big adjustment from where we came from. Miss our "big" room and friends over on the south side!!! Mack did well with her first day of radiation. Two ambulance trips a day over to the cancer center two block from here to the tune of twelve hundred dollars a day. Crazy! Mackenzie spiked a temp this afternoon, which I guess can be common with total body radiation... nonetheless, we've added antibiotics and daily blood cultures and the whole routine. Please pray for a quick resolution to the fever and for protection from ALL the nasty side effects of radiation and chemo. Also continued prayers for protection of all her organs, praying that God would allow them to rest and do the work for them. Praying for every leukemic cell to PERISH and for healing and restoration of Mack body. Always pleading for more mercy and more grace to rain down on Mack.
Tomorrow, Thursday and Friday will be the same routine. The days seem long and the whole process seems overwhelming. Mack's medication list is growing faster than I can keep up with. I wonder how we will endure the days ahead, but I have confidence that God will meet us each step of the way, providing for our every need and tenderly caring for us. In Him, I have peace.
Well, I'm off to try and get some sleep at the apartment. It is wonderful to have our own space! Truly a blessing! Keep praying guys, we still have a mountain to climb! More tomorrow. Much love, Amy
Sunday, May 6, 2007 8:38 PM CDT
Well, its been an eventful weekend, thats for sure! We moved into our apartment and have been overwhelmed with love and support from so many people. Our fridge and pantry are stocked, our beds have linens, our bathrooms have toiletries, our kitchen has been supplied... God is amazing! Thanks to all those who helped us move and provided us with everything we need to live in our new apartment. I am still in awe.
The birthday party today was a lot of fun. It was so nice to actually all be together in one room. Mack has LOVED hanging out with her sisters and cousins all weekend long. I think she will go through withdrawl tomorrow when everyone leaves. To add some excitement to the night, Mackenzie had a bad anaphylactic reaction to her platelets today which almost bought us a ticket to peds ICU after two rounds of benedryl, steroids and epinephrine. I guess she wanted to make sure she got everyones attention on her last night on the oncology floor. Praising God for the way He has protected her and the way she is recovering from massive vomiting, hives all over, wheezing lungs, dropping her oxygen level, swelling up so quick she couldn't even open her eyes, on top of her swollen tongue and throat making it difficult for her to breathe or talk. A little scary to say the least. "Thank you Father, for protecting Mack once again. Lord, we ask that you would continue to have your hand of protection on her and keep your angels around her to protect her from all harm. Continue to guard each organ and maintain their function. Give us the strength and courage to get through the days ahead. We lean heavily on YOU because we cannot do this on our own. Lord, we continue to ask that you command every leukemic cell in Mack's body to perish and bring healing and restoration in her new healthy bone marrow. God, bless those new cells... touch them and prepare them to thrive in Mack's body as You prepare her body to receive the new cells. Lord, let them engraft quickly and fill her marrow with health. Thank You for Your faithfulness in the way you continue to provide for our EVERY need. Father, you always, always give us exactly what we need and I stand in awe of your love and devotion. You are so good and I love you so much. Carry us in the days ahead and shower Mackenzie with mercy and grace beyond our comprehension or expectation. You are able to shelter Mack from all the horrible side effects that pose a threat to our little girl. Lord, we call on You, because You are the only one who has that ability to FULLY care for Mack and we believe in Your love for her and in your mighty power. We praise You and thank you in advance for all that your going to do. Give us rest tonight and instill us with Your peace. There is no greater place to be than in your arms. In Your son's holy and precious name, Amen."
Please continue to pray as He leads you, and specifically for an easy move and adjustment to the bone marrow transplant unit tomorrow. More then. Love, Amy
Friday, May 4, 2007 3:33 PM CDT
Just got word that Mack's new cells are in route to the hospital from St. Louis as I type. They are expected to arrive around 6pm... cryopreserved on dry ice. We found out that the umbilical cord blood cells were from a baby girl born in 1997. Amazing that they can wake up those cells after ten years and put them into another little body to thrive! The schedule remains same... moving to the BMT unit on Monday, radiation Tues through Fri, chemo Sat and Sun and transplant on Tuesday. Its just exciting to think that those cells are actually here. My heart has so much emotion and so much love and gratitude. Mack had a good day. Her central line is fine and they feel the bruising is from trauma when it was placed. "Thank you Lord!" Moving into our apartment tomorrow... couldn't be more perfect timing as we have GOT to start moving some of Mack's stuff. It is amazing how much we have accumulated! It will be strange to start all over again with new doctors and new nurses. We will miss the oncology team and look forward to coming back to their service IN REMISSION!!!!! Please continue to pray for protection for Mack... not only these next few days prior to transplant, but throughout the entire process. Specific prayers that somehow God will shelter her from all the horrific side effects. That He would pour out overwhelming mercy and grace on Mack. I can't even imagine what lies ahead, but I cling to His faithfulness in getting us through. He's the ONLY way! Also, continued prayer for protection of Mack's organs... specifically her kidneys and liver, they've got A LOT of work ahead, her heart, lungs, brain and bowel from the awful side effects of total body radiation. Praying that these new cells would infiltrate Mack's bone marrow quickly, that they would engraft and begin producing new healthy cells. Praying that there would be no rejection, that Mack's body would accept the new cells as if they were her own. And last but NOT LEAST... that every leukemic cell would PERISH through this transplant process and by the hand of our great God!!!!!
It will be a busy weekend moving and celebrating Lindsay and Taylors birthday. Thank you guys, so much, for EVERYTHING you do and your relentless efforts to help us along the way. You have no idea how much you have blessed us! Much, much love to you all, Amy
Thursday, May 3, 2007 8:33 PM CDT
My dear friends... it is so good to hear the joy and praise in everyone's posts. My heart grows everytime I read each new entry. I didn't share one thing with you yesterday because I didn't want it to rob you of the joy we all received in answered prayers in an open door to transplant. And I didn't want it to hinder you from praising God for this opportunity we've been granted. When Stella came in to give us the green light on transplant, she prefaced it by saying, "we don't think this will work, but we are going for the miracle". I think my heart stopped beating for a second until I realized, well, it doesn't really matter what Stella thinks because God has the ultimate say. He has always known the number of days of Mack's life and NO ONE can change that. All we asked for was the opportunity and chance for life and we were given that. Beyond that, it has and always will be up to God. Frankly, man's "prediction" doesn't mean anything to me anymore. As humans, we so desperately want to cling to or hold on to or place hope in something tangible. And when it comes to illness... we hang on every statistic. That is not where I place my hope... our hope has always been in "the MIRACLE", so Stella and I are on the same page... no matter what her predictions are. Our hope is in Him, always has been, always will be. May YOUR faith be renewed and your hope restored through this journey we are on together.
Mack had a pretty good day today. Her heart rate and temp were up a little in the night last night so she was pretty tired today from the comotion of last night. She seems to be holding her own. Please continue to pray for protection from all infections and any other threat to her weak little body. The doctors have restarted the blood thinners which is a small injection in the back of her arm because the strange clot in her jugular was seen again on her CT scans for transplant. She HATES these injections!
She also has some strange bruising around her central line site that I am concerned about the catheter having a small leak in it. Please, please pray that she doesn't have to have this one removed and another one placed!
Steve, my dad, the girls, my brother and his family are all coming down for the weekend. Celebrating the twins birthday, a little early because next weekend Mack will be feeling lousy. She's excited about the birthday party.
Please continue to pray for protection of Mack's organs, for every leukemic cell to PERISH and for more mercy and grace in healing of Mack's broken body. It is a long hard battle ahead and we will need you all to carry us and call on the Lord to reveal the miracle we desperately long to see! Keep PUSHing and PULLing! Much love, Amy
Wednesday, May 2, 2007 5:05 PM CDT
WE'RE GOING TO TRANSPLANT!!!!!
Total body radiation starting next Tuesday May 8th for 4 days, 2 days of intensive chemo on the 12 and 13th, rest on the 14 and umbilical cord blood transplant on Tuesday the 15th. PRAISE GOD!!!
This has been a HUGE battle over the past four months and the biggest battle is yet to come. Mack needs your prayers now more than ever! But tonight, we just praise God for renewed hope and for another chance at healing and life for our little girl! Thank you for walking with us, waiting with us and carrying us on this long road! More tomorrow. Love, Amy
Wednesday, May 2, 2007 8:37 AM CDT
I'm standing again! Feeling stronger this morning and grateful for the way you all have picked me up. Mackenzie is feeling better than ever and lookin' strong. Praying for the doctors meeting today at 2pm, specifically that God would direct their conversations, give them specific wisdom and discernment regarding Mackenzie's care and prompt and nudge them to MOVE in the direction He wants them to move. Of course, we are pleading that we get our ticket that says, "we're going to transplant".
I think we MAY have found the kink in the system regarding the medicaid issue and are working on getting that staightened out. Please continue to pray for God's provision over the funding and that all would be cleared up without any repercussions. As an affirmation of His provision and faithfulness, we got a call last night from a family who had a child pass away from cancer here in Cincinnati a few years back. They have started a foundation to help other families and have offered to help with the costs of rent in our new apartment. Amazing! Mackenzie's CT scans from yesterday were clear and all of her pre-transplant testing is now complete. The only way she could be more ready is if every last leukemic cell would PERISH! Please continue to join us in asking for God's healing hand to move over Mack and restore her health. Gotta run and get in the shower. I'll write again as soon as we hear how the discussions went. I'm not expecting much new, as they have made it pretty clear that they anticipate just repeating the bone marrow aspiration next week which means more waiting. Clinging to my faith and His promises while watching for His mercies today. Love you all, Amy
Tuesday, May 1, 2007 10:21 AM CDT
*****5pm... could this devotional be any more appropriate for today? thank you Jim!!!
May 1, 2007
JUMPING TO CONCLUSIONS
by Charles R. Swindoll
Exodus 14-15
THE OPERA AIN’T OVER . . . ’TIL THE FAT LADY SINGS. It was a banner hung over the wall near the forty-yard line of Texas Stadium. The guys in silver and blue were struggling to stay in the race for the playoffs. So some Cowboy fan, to offer down-home encouragement, had splashed those words on a king-size bedsheet for all America to read. It was his way of saying, “We’re hangin’ in there, baby. Don’t count us out.”
Sure is easy to jump to conclusions, isn’t it? People who study trends make it their business to manufacture out of their imaginations the proposed (and “inevitable”) end result. Pollsters do that too. After sampling 3 percent of our country (or at least they say that’s what it equates to), vast and stunning statistics are announced.
Every once in a while it’s helpful to remember times when those preening prognosticators wound up with egg on their faces. Like when Truman beat Dewey, and England didn’t surrender, and the Communists didn’t take over America by 1975.
Yes, at many a turn we have all been tempted to jump to “obvious” conclusions, only to be surprised by a strange curve thrown our way. God is good at that.
Can you recall a few biblical examples?
Like when a young boy, armed with only a sling and a stone, whipped a giant over nine feet tall. Or the time an Egyptian army approaching fast saw the sea open up and the Hebrews walk across. Or how about that dead-end street at Golgotha miraculously opening up at an empty tomb three days later?
Anybody—and I mean anybody—near enough to have witnessed any one of those predicaments would certainly have said, “Curtains . . . the opera is over!”
Unless I miss my guess, a lot of you who are reading this page are backed up against circumstances that seem to spell THE END. Pretty well finished. Apparently over. Your adversary would love for you to assume the worst, to heave a sigh and resign yourself to the depressed feelings that accompany defeat, failure, maximum resentment, and minimum faith.
But take heart. When God is involved, anything can happen. The One who directed David’s stone and opened that sea and brought His Son back from the dead takes delight in the incredible.
In other words, don’t manufacture conclusions. There are dozens of fat ladies waiting in the wings. And believe me, the opera ain’t over!
God delights in mixing up the odds as He alters the obvious and bypasses the inevitable.*********
******4:30 UPDATE******* Wow, can I feel the power of prayers today. Thank you all! I might not be standing completely upright yet, but at least my face is out of the dirt and I'm on my knees. I'll get there thanks to your love, friendship, support, care, and prayers on top of a BIG God who loves each and everyone of us more than we can imagine. Still no word on the legal/financial stuff (Beth-got your voice mail and I'm so grateful for your help and so thankful you have friends in "high places". I will call you soon.) Mack has had an amazingly good day working hard with all of her therapist. I happened to catch Mike (Mack's oncologist) in the hallway and asked about the flow results. Let me set your perspective that he is not on service and didn't need to come talk to us, but a little while later he did. He said they were able to do some "special technique" to use the flow since there really were still too few cells and the flow studies showed about 50f the cells to be leukemic. That doesn't mean much and doesn't change anything. 50f very few cells doesn't give an accurate picture of what is going on in Mack's marrow... it is empty. I mentioned to Mike that Lindsays cardiologist called last night to check on Mack. To say that this guy is BUSY would be an understatement and yet his thoughts were on Mack...who's not even his patient the entire day. His phone call came at such a great time, because it was right after we had just received the news of "no change and more waiting". I gave Alex an ear full. Told him everything I thought and he said, he would do the exact same thing if he was in my shoes. It was so good to hear that validation from another doctor whom I trust and have a great relationship with. After sharing this with Mike today, he decided to give Mack some vincristine (chemo). Not expecting this chemo to destroy anything that is left in her marrow, but hoping it will prevent it from multiplying while everyone makes their decisions. I sat there in amazment, and knew beyond a shadow of a doubt that God gave Mike that thought. The doctors meet at 2pm tomorrow to discuss Mack's case. Pleading that they make the decision to move to transplant TOMORROW, rather than waiting another week and repeating the marrow aspiration. She's strong and in good health now, it is time to move if we are going to move to transplant. Please join us in praying for that decision to be made tomorrow. And of course continued prayers for protection over Mackenzie, leukemia cells to PERISH, and state and federal funding to fall into place. You guys are the best, and I don't know what I would do without you. Thank you for riding out all my emotions with me. It's been a tough journey. More later. Love, Amy*******
Feeling so down and defeated today. As though someone has been hitting my knees with a bat and I've fallen to the ground and yet, they continue to hit me and rub my face in the dirt. On top of the medical stuff, it appears that the financial advisor here at the hospital may have steered us wrong and we could be in a big legal mess. Mack's health insurance has capped out. A million and a half gone in just over three months here. Now the state wants to garnish Steve's wages and go after Steve to pay all the medical bills. It's a nightmare and of course, when you are dealing with state and federal things, it is very difficult to talk to someone "live". We may have to go through some "special hearings". I can't take anymore of this. I just want it all to go away. I want my life back. I want to go home. Steve and the girls left this morning which didn't help my spirits any. I miss them so much. As far as Mack, well...that bright smiling face could warm anyones heart. She continues to thrive and her advice to me, "don't worwwy, be happy". I don't know what to think or feel, how to proceed or go on. I just need DELIVERANCE. Mack's CT scans are at 1pm today. Hoping to talk to the BMT doc in the morning and then they will meet tomorrow afternoon to discuss Mack. They've made it pretty clear that they expect to just "repeat bone marrow aspiration on Monday". More waiting. Keep praying. More later. Love, Amy
Monday, April 30, 2007 5:02 PM CDT
Ahhhhhhhhhhhhhhhh! I'm so mad and frustrated right now I can hardly function! News in a nutshell... her aspiration looked exactly the same as last week which is VERY unusual and rare. It doesn't look like her bone marrow will recover or if it does, it will take a very, very long time. They say these are "very unique circumstances" that don't have clear cut answers. Now it is in the hands of the transplant team to decide if they will just take her to transplant or not. Unfortunately it sounds like they are leaning towards making us repeat this all over again next week. AHHHHHHHHHHHH!!!! I CAN'T TAKE IT ANYMORE!!!!! Please, please pray that Stella would just make a bold move and move her to transplant now while her marrow is empty and she's in great shape. Begging God to end the waiting!!!! It is torture! Mack's going to have total body CT scans tomorrow... the last test in preparation for transplant. And the team will meet again on Wednesday to discuss how to proceed. My ONLY prayer request is that the doctors would show mercy and know how horrifically difficult this has been on us for almost four months now and they would weigh that in their decision to just move to transplant. And maybe a prayer for my attitude which isn't very good right now. Frankly, I'm ticked off. More later. Love, Amy
Monday, April 30, 2007 9:54 AM CDT
Wishing ALL of you could be here with us in room 535!!!! You sure would think we would be freaking out, anxiety ridden, but we are already celebrating. Music cranked, praising God and dancing with joy for ALL He has done and is doing!!!! This is the image of PEACE that surpasses all understanding in the ULTIMATE form during this most uncertain and critical time of our lives. He is good! This floor is going to erupt in praise all day today. He is the same God as yesterday and will be the same tomorrow. He has the power to give life and heal lives. When man says 'no', He has the power to say "yes"! He makes ALL things possible. Join us in praising Him today as we wait on results of Mack's bone marrow aspiration.
Test is at 1:30... hoping to hear some results later this afternoon or evening. As soon as I know anything... I will post. Praying for remission that sends us to an even bigger battle yet... transplant! "COME ON BONE MARROW, let every leukemic cell PERISH... Father God, let those cells die and disappear, right NOW in Jesus name! And by Your powerful healing hand, let healthy cells reign in Mack's marrow. And let ALL the glory be given unto YOU! We love you Lord and praise You. In Jesus powerful name, Amen." Love you all, more than you'll EVER know, Amy
Saturday, April 28, 2007 8:24 AM CDT
***11:30am Just read through this entry and the strangest thing... I had included the definition of "perish" as it is a powerful word that we are using in our prayers for Mack's leukemia and the computer just completely omitted that sentence and only that sentence. So I've added it back in the original text. Love you all.********
Day 94. Thought I'd get a quick update in before the flurry of activity begins. Steve and the girls are on their way down and our good friends Larry and Anne will be here this afternoon too. Soooo excited for company. The days have been getting longer and longer lately, but thankfully they feel longer because there really is nothing going on here. Mack has been feeling great and getting stronger everyday. The hospital has a play ground in an enclosed deck area on the roof and if the weather cooperates, shes excited to take her sisters out there today. It will be her first time outside since we got here 3 1/2 months ago. Last week in the doctors big meeting... the transplant team told the oncology team to work on two things before transplant... first, clearing up Mack's infection and second, clearing up the blood clot in her jugular vein. Well, guess what, check both off the list WE'RE READY FOR TRANSPLANT.... COME ON BONE MARROW! Still clinging to the words the Holy Spirit gave me in healing for Mackenzie. It was a consuming thought that overtook my own thoughts and was not "of me". But, man,... doubt STILL tries to pull me down. I refuse to entertain those thoughts unless the Voice of Truth tells me otherwise. Everytime I fall back on those words of healing, it is my rock... a foundation for my feet. I feel safe and secure when everything around me is uncertain and scary. And because of my relationship with God and His faithfulness, I continue to believe in healing, believing in His Word. And by the power of the Holy Spirit we continue to lay our hands on Mack and command every leukemic cell to perish (PERISH - To die or be destroyed, especially in a violent or untimely manner. To pass from existence and disappear). Mack's bone marrow is scheduled for 1:30pm on Monday. Gear up AGAIN prayer warriors, this is the battle we've all been waiting to win. Please continue to pray for every cancerous cell to wither and die, for healthy cells to be produced in abundance, for total protection and for healing for our little girl. We CAN walk across the waters, just DON'T take your eyes off of HIM!!!! More tomorrow. Much love, Amy
Thursday, April 26, 2007 5:18 PM CDT
Mack had a great day today. She rode her bike down to the gift shop and bought some new Polly Pockets. She also rode to the library, but there were too many kids there to stay and play. You can definately see the effects of the steroids and vincristine on her muscles... she is much, much weaker, but motivated to keep going. Today is day 92 inpatient. Just waiting for MIRACLE MARROW MONDAY. COME ON BONE MARROW! Not much going on over the weekend. Steve, my dad and the girls are coming down on Saturday and will be here through Tuesday or Wednesday. We signed our lease and move into our new apartment a week from Saturday. I'm looking forward to our own space. (and not having to figure out where everyone is staying when they come down). Just 8 blocks from the hospital, you can walk it in 10 minutes. I'm amazed, once again, at God's provision. And grateful to all who have donated to Mackenzies Fund as they will enable us to have this apartment here and be together as a family. Thank you so much for your love and generosity. Please continue to pray for protection from all infections, protection of Mack's new central line, increased strength and endurance, and healing of Mack's marrow. Believing the words the Holy Spirit spoke to me and believing in the healing power of our great God. And by the power of the Holy Spirit, commanding the leukemia to wither and die and let remission reign!
Spoke with Lindsay's cardiologist last night and her holter monitor results were unchanged after starting a new anti-arrythmia medication. That is a good thing! She is due this month, April, for her big cardiac work up, but Dr. Javois said not to bring her in until sometime this summer. Thankful to put that on the back burner for a few more months. "Thank you Jesus!" Please continue to pray for stability and healing of Lindsays heart!
Keep PUSHing and PULLing! Love you all, Amy
Wednesday, April 25, 2007 5:39 PM CDT
Another wild ride today. Mack went to the O.R. around 1pm. The surgeon had some difficulty in placing Mack's line because of all the narrowed areas in her vessels and the "supposed clots" that have been documented on ultrasound and MRI along with the SVC obstruction that she has. Interestingly enough, while the surgeon was in the vessels, he pushed some dye through and saw that Mack has grown collateral arteries compensating for the SVC obstruction. These are arteries we have looked for on MRI and not seen, but hoped they were there. Also, at one point he tried to advance the catheter down towards the heart, but instead it went up into her interior jugular vein. This is where all the concern has been about the obstructive clot they saw on MRI and the reason they started her on blood thinners. The surgeon said, there is no clot there and no obstruction... the catheter "accidently" went up in that vessel and passed with ease. Now there is a BIG question of whether or not there really is a clot and they are consulting the hematologist to see if they should take her off the blood thinners. That would be HUGE!!!!! God is amazing! She may have to go back to MRI tomorrow for some more imaging to look at this issue, but how reliable is it? Very interesting. We are seeing Gods mercy in a big way and so grateful for this grace. It was MUCH needed. Also, the radiologist read the placement xray as "Not in optimal position", but her line flushes and draws beautifully. Praise the Lord!
The entire team of doctors here met and all concluded that the last marrow from Saturday was clearly too early to make any decisions based on. So we are praying and claiming Monday to be "Miracle Marrow Monday".... COME ON BONE MARROW!!!
As I type, I just got word that there will be NO MRI TOMORROW AND NO MORE BLOOD THINNERS!!!!! "Oh God Amighty, thank you so much for showing me how great and powerful you are in tangible ways today. You know how crushed my spirit was and I desperately needed You to pick me up. Thank you for never leaving my side. Thank you for more mercy and more grace for our sweet baby girl. Thank you for showing us your mercies new today. Thank you for divine wisdom about the "clot issue" in Mack's jugular vein. You never cease to amaze me. Father, forgive me for doubting the words you gave me regarding a healing for Mackenzie. I've been tormented by a battle in my head... flesh vs. spirit. Forgive me for allowing man to rip away my hope so easily and forgive me for being discouraged by numbers, statistics and man's best guess at what may lie ahead. Forgive me for taking my eyes off you for even a brief moment. I see how quickly I fall without you. How quickly my spirit is crushed when I take my gaze off you. Thank you for carrying me today when I could not go on. Thank You for opening Mack's jugular vein and clearing the clot. Thank you that no more imaging is required and that Mackenzie doesn't need to go through anything more. Thank you that Mack's new central line infuses well and draws blood well. Please continue to protect that line from any infections, keep it in the perfect location and continue to allow it to draw blood. And Father God, we thank You for healing Mackenzie. And we praise you for Miracle Marrow Monday. Continue to do Your work in Mack as she lays at Your feet. She is YOUR child Lord and she continues to need Your healing hand and your divine protection over her. Thank You for bringing so many people into our lives.... to love us, to support us, to carry us, to cry with us, to laugh with us, to feed us and rest with us. Your family is incredible and your design for family is so amazingly beyond expression in words. Lord we love you. We trust You. We believe Your word. Carry to victory. Amen."
More tomorrow. Love, amy
Tuesday, April 24, 2007 5:16 PM CDT
****midnight update*****Having a hard time sleeping. I hurt down to my soul and have been crushed in spirit. Thank you for picking me up and helping me press on. You guys have no idea what your words of encouragement and prayers do for me. I have been sobbing for hours, partially for Mack, but even more so at the thought of losing this little ministry that I have grown to love so much through this website. I don't even know most of you and I love you beyond what is humanly possible. I long to share our Great God with you and encourage you in your relationship with Him. My soul bleeds at the thought of losing Mack, but the pain runs even deeper when I think about losing all of you that gather here to pray for one little girl whose her changing lives around this world. You guys have no idea the depth of my love for you. It is the love of Christ overflowing from me. I don't know how else to describe it. It is God that makes it possible to have such a deep connection and love and concern for people you've never met. What a blessing you are to me! Also wanted to let you know that Mack will be going to the O.R. again tomorrow. They will be putting in another central line. Praying for an easy insertion, no infections, peace for Mack (shes scared) and of course shouting to heaven for healing of her bone marrow. I keep thinking about the time the doctors told us that Lindsay could not have her repair surgery on her heart because her pulmonary arteries had not grown. They decided to do one more test a week or two later, and to everyone surprise... they were normal size. Or when she was bleeding internally and had no blood pressure or oxygen level and they took her to the operating room in the middle of the night, but told us she would not come out alive. She's almost twelve now. Surely, if He can do these things for Linds, He can do them for Mack. Praying with all that is within me, for MIRACULOUS MARROW MONDAY!!!!!!! He is able. I will not give up hope until He tells me the fight is over. Clinging to His promises. Keep praying. Love, Amy********
This is one grueling journey... and we have no idea where we are going. Mackenzie's bone marrow is so empty right now it is hard to sort things out. Unfortunately, we know for sure there is still leukemia there, but it is hard to know exactly how much because some cells may still be dying off from the "leg shot" chemo and healthy cells are just beginning to be produced and those immature cells "mimic" leukemic cells. Without the flow cytometry, it is mans best guess at what is what. This is very subjective. Also, when more cells are produced you will have a much better sense of "percentages". As hard and awful as it is for me to write this, of the few cells that are there, they are guessing that 70 percent are leukemic. That makes my stomach turn just writing that. Bottom line, we must repeat all these tests next week... Monday. I feel like a dagger has been in my side and it just keeps getting dug in deeper and deeper, turning and ripping at my flesh. And oddly enough, I still feel hopeful. I don't get it. It's hard for me to sort out whether or not I'm in denial or if I just so firmly believe in the word the Holy Spirit gave me in healing for Mackenzie that I'm claiming it. Everything seems so stacked against us all the time and yet, Mack is thriving. None of this makes sense. It's so hard to know how to proceed in the "grey areas". We need wisdom and guidance from God!!!! We need His hand to destroy more leukemia for us, we need His protection to keep Mack safe, and we need His mercy, grace and love to see us through. I don't know how to go on like this anymore, so He must carry me. I can't do it.
Mackenzie continues to feel great and we are praising God that her IV in her hand is holding up. Continued prayers for that IV to infuse and draw well. Hoping to have a new central line put in sometime this week. Other than that, it is just a week of praying, healing and recovering for Mack. I'm at a loss for words and my head is pounding so I just ask that you pray for all that is laid on your heart and any thing that comes to your mind. More tomorrow. Love, Amy
Monday, April 23, 2007 6:43 PM CDT
Oh boy... well, after another long day of waiting, we still have no news. We are hoping to have the results of her bone marrow biopsy and the genetic study back tomorrow, but there is a possibility it won't be back until Wednesday. AND, mostly likely what is going to happen is they'll say it is just too early in the recovery process and they will have to repeat everything in a week. Her bone marrow is pretty much empty, but there are a few definite leukemic cells. It is just a matter of trying to determine whether or not there are few enough to go to transplant and we don't even know what that "magic number" is. I don't think they even know... this is a very unusual situation and they will look at the entire package... all the results and her clinical status combined. Please pray specifically for wisdom for Mack's oncologist, Mike, and her bone marrow transplant doctor, Stella. HUGE, HUGE, HUGE decisions to be made and we would really like the Lord to make those decisions and not the doctors. Praying that He would give them specific thoughts and knowledge that pertains to Mackenzie. Praying that He would press heavy on their hearts and minds the right approach and the right direction to take. Praying we can move forward with transplant. Praying for healing for our little girl! We are in desperate need of God's divine intervention RIGHT NOW!
Mackenzie continues to feel great. Her peripheral IV is working well and drawing better than any central line she has ever had. We are hoping to get by with this until we can put in a new central line. She's back to her old happy, playful self and we are enjoying her sweet personality again. The steroids seem to be out of her system as far as her emotions. She went downstairs for physical therapy today and worked with her preschool teacher after taking last week off. She was just feeling too lousy last week. Steve and I have found an apartment about four blocks from the hospital that we will most likely sign a lease on tomorrow. Please pray for this decision for us. It seems to be perfect for our needs, but God knows more than we do. These are all such tough decisions. I feel numb... and I don't know what I should be feeling. It is the strangest place to be. Not knowing how to feel, and trying to stay neutral and live in the moment. Living in the unknown for soooooooooooooo long feels like this massive pressure hovering over us. Like being in a pressure cooker. It all seems to be building up and coming to a head. COME ON BONE MARROW!!!!! I get the impression that the doctors feel it is "unlikely" we will be moving forward with transplant, but they so desperately want to get Mack there, that they are trying to hold out hope. Of course, no one has said that, it is just my sense. We've seen God's hand move in these types of situations before with Lindsay and we pray that He would do the same for Mackenzie. COME ON BONE MARROW!!!!
Thanks for hanging in there with us. All this waiting is grueling!!!! We are so blessed by your continued prayers and support for our family. And we are so grateful to have you all in our lives! More tomorrow. Love, Amy
Monday, April 23, 2007 11:08 AM CDT
No news yet, we are standing still here in Cincy and waiting on the Lord. Thought this devotional was so awesome and appropriate today that I had to share.
From Romans 4:20-21 "He did not waver...regarding the promise...,being FULLY persuaded that God had power to do what He had promised." Scripture tells us that Abraham, "without weakening in his faith,... faced the fact that his body was as good as dead" He was not discouraged, b ecause he was not looking at himself, BUT at almighty God. "He did not waver...regarding the promise" but stood straight, not bending beneath the staggering load of God's blessing. INSTEAD OF GROWING WEAK, HIS FAITH GREW STRONGER, EXHIBITING MORE POWER, EVEN AS MORE DIFFICULTIES BECAME APPARENT. Abraham glorified God for His complete sufficiency and was "fully persuaded that God had power to do what he had promised." The literal translation of this passage from the Greek expresses the thought in this way: GOD IS NOT MERELY ABLE BUT ABUNDANTLY ABLE, BOUNTIFULLY AND GENEROUSLY ABLE, WITH AN INFINITE SURPLUS OF RESOURCES, AND ETERNALLY ABLE TO DO WHAT HE HAD PROMISED. HE IS THE GOD OF LIMITLESS RESOURCES - THE ONLY LIMIT COMES FROM US. OUR REQUESTS, OUR THOUGHTS, AND OUR PRAYERS ARE TOO SMALL, AND OUR EXPECTATIONS ARE TOO LOW. GOD IS TRYING TO RAISE OUR VISION TO A HIGHER LEVEL, CALL US TO HAVE GREATER EXPECTATIONS, AND THEREBY BRING US TO GREATER APPROPRIATION. Shall we continue living in a way that mocks His will and denies His Word? THERE IS NO LIMIT TO WHAT WE MAY ASK AND EXPECT OF OUR GLORIOUS EL SHADDAI - OUR ALMIGHTY GOD!!!!!! And there is no way for us to measure His blessing, for He is able to do immmeasurably more than all we ask or imagine, according to his power that is at work within us!!
Wow, join us today in raising our vision to a higher level with higher expectations regarding a complete healing for Mackenzie. We are waiting on the Lord and asking for biopsy results that send us to transplant!!! More when I hear news from the docs. Much love, Amy
PS Mack looks awesome and feels great. It is so wonderful to see her feeling so well. Keep praying!
Sunday, April 22, 2007 9:18 PM CDT
What a difference a few days and new antibiotics makes!!!! MACK IS BACK! Our Wild, silly, spunky little girl is ready to "party dude". Such a blessing to see that sparkle in her eye. Praying specifically tonight for good biopsy results tomorrow that enable us to move forward with transplant! COME ON BONE MARROW!!!! Results most likely won't be back until late afternoon. Also, praising Him for healing of the infection and ridding her body of the two bacterial culprits found in her blood. "Thank you Jesus!" Prayers for wisdom and guidance for ALL the doctors and pathologists involved. I will let you all know as soon as I hear any word on the biopsy. COME ON BONE MARROW!!!!! Keep praying! Much love, Amy
Saturday, April 21, 2007 1:39 PM CDT
*****8pm update*****There were not enough cells seen today to perform the flow cytometry studies. Waiting for biopsy results on Monday to hopefully give us some more info and for the pathologist to read the slides. If things are still inconclusive after those results on Monday, we will wait another week and repeat the bone marrow. Still praying, still asking, still believing in a healing for Mackenzie! The Holy Spirit has been overwhelmingly present. More tomorrow. Love, Amy
PS Forgot to mention, that Mack is feeling great, her cultures are negative and fevers pretty much gone. Praise the Lord!!!!! The central line came out today without any difficulty and we'll limp by with a peripheral IV until we can put in a new line. Mack's getting the blood thinner shots twice a day and her sparky little personality is beginning to shine again!
We're still in a waiting pattern. This has to be one of the most difficult days of my life. Mack's marrow looks pretty empty... which is good, but makes it very difficult to interpret things. The doctor did see some cells that were "concerning" but it is hard to put a number or percentage on it because there are just so few cells. Also, very new healthy cells can mimic these "concerning" cells so it is difficult to decipher what is going on this early in the recovery process. They are hoping to run the flow cytometry today, but are still unsure if there are even enough cells to do the flow study. If there are enough cells, those results won't be back until later this evening. Biopsy results will not be back until Monday. More waiting, more unknowns, more frustrations, more fears, more prayers. Please pray today, specifically, that there would be enough cells to do the flow cytometry and that those results would give us more solid information about Mack's marrow. And of course, praying for the percentage on the flow to be less than 5 o Mack can move forward with transplant and for complete healing and recovery for our sweet baby girl. Keep praying, keep praying, keep praying. Much love, Amy
Friday, April 20, 2007 9:46 PM CDT
Well its late, and I'm finally getting to this update. So much has transpired since this morning. I'm sending out an SOS because tomorrow is a HUGE day! Mack has two very unusual bacterial infections in her blood. At first it appeared they were responding to the antibiotics and she is clinically looking better, but her cultures are still positive. This has many repercussions. Tomorrow morning Mack will be going to the OR to have her central line taken out, AND HAVE HER BONE MARROW ASPIRATION. This is it. Tomorrow we will celebrate the opportunity for life, or grieve the end days. It is humanly impossible to live in my shoes right now. My emotions are all over the place and I'm exhausted. Please pray for peace tonight and tomorrow. My dad and Steve are driving down as I write. I feel plagued by satans attack, but I'm clinging to the words the Holy Spirit gave me in Mack's healing. I'm fixing my eyes on Him and trusting Him to carry us. Praying tomorrow brings victory and celebration in moving on to the next phase of this journey... bone marrow transplant!!!!! Her OR time will be fairly early in the morning so please be in prayer for our family tonight and tomorrow. We should have some answers by the afternoon. I will let you know as soon as I can. Gear up prayer warriors we are on the front lines of this battle right now!!!!! Lets put on the armour of God and fight together for victory. He has lead us here, He will deliver. Also praying diligently for Mack's infections to clear and respond to the antibiotics so that set back would not hold up transplant. And pray, pray, pray in every way He leads you. We need you all now more than ever. Keeping my blind faith and holding it high with raised arms. COME ON REMISSION!!!!! More tomorrow. Much love, Amy
Friday, April 20, 2007 6:47 AM CDT
Yesterday will be marked in our minds forever with great memories, as Mack got to spend the day with Ace. She's still quite tired and very quiet... NOT like her at all. After taking some time to sing a few songs to all the kids on the floor, it was back to her room, where Mack taught Ace her favorite song "Five little monkeys". Wishing she had more energy and spark to interact, but she was proud to show him how she can ride her bike and they took turns jumping on her trampoline. That took about every ounce of energy from her. After that they settled in her bed and watched the movie "Cars". Thank you Ace, for caring and giving Mack one of the best gifts ever... a piece of your heart and your valuable time.
Mackenzie continues to have periodic fevers, but it appears the bacteria is responding to the antibiotics. Shes very tired and we miss seeing that wild and crazy girl tearing up the joint. Her smiles are hard to come by these days and that rips at my heart.
She started the blood thinners yesterday with hopes of helping the clot in her jugular vein. Last night she was complaining of pain on that side of her neck which has raised concern in all of us. I wouldn't be surprised if she has more films done today. Please continue to pray for the clot to dissolve and completely resolve. Most of her pre-tests for bone marrow transplant have been done. I think the only thing left is a total body CT scan which will be done next week. Can't believe the big day is only four days away. COME ON REMISSION! It has been a long three months of waiting. Let's rally together in prayer over these next four days, storming the gates of heaven and asking for healing on Mackenzie's behalf. Steve and the girls are coming down on Sunday so that we can all be together on Tuesday. Wishing they could have been a part of Mack's great day yesterday!
Gotta run and check in with the docs to see the plan for the day. Hope to have a chance to update again later on. Much love to you all, Amy
Thursday, April 19, 2007 6:57 AM CDT
Well, we found the culprit... yesterdays blood cultures came back positive with gram positive rods. The "ID" on the bug should be back sometime today, but Mack definately has a bacterial infection in her blood. The new antibiotics seem to be helping as the fever seems to be spacing and she appears to be feeling better. Praise the Lord! She was supposed to go for several tests today in preparation for transplant, but I suspect they will be held in light of this new hurdle. If its not one thing, its another and yet Mackenzie handles it all so well. God's grace and mercy is abundant! Haven't spoken to the docs yet, getting ready for morning rounds so I better run. I'll give ya more details later today. Much love, Amy
Wednesday, April 18, 2007 6:58 AM CDT
*****9:30pm Update*****Well, the temp spiked which bought us triple antibiotics. Amazingly, I'd say today was her best day in awhile. She was up and about for awhile, down in the playroom. Her chest xray was clear and no decision was made on the clot in her jugular vein. Keep praying! More tomorrow. Love, Aim******
****11:30am update***** Just a quick SOS with new prayer requests. Mack is "brewing" something. Her heart rate is up and her respiration rate is high and her temp has slowly been creeping up. Just got a chest xray, don't know the results and tried to draw blood cultures, but again her new line would not draw. Trying TPA to open up the line and hopefully we will get blood return in the next hour or so. Please pray specifically for any threat to Mackenzie's body to be destroyed, that she would NOT spike a temp, that God would protect her lungs and body from all viral, fungal and bacterial infections. Continue praying for bone marrow recovery and healthy cells. The next few days will be "touchy". I'll write again when I know more. Love, Amy*******
Good morning. I'm at the Ronald McDonald house this morning and getting ready to head back to the hospital. Just wanted to give you a quick update as this will be a busy week. Yesterday Mack had another angio MRI as they found this clot/obstruction in her jugular vein in neck. It's most likely very old, but it is in a VERY critical part of her body. If it gets bigger and travels up... it will go to her brain and she could have a stroke. If it grows down, it will go to her heart or lungs and would be deadly. The doctors are unsure as to what to do at this point. She will most likely start on blood thinners today which also carry many risks and would necessitate probable daily or every other day platelet transfusions. As you know it has been difficult to get A negative platelets for Mack even now as she has been receiving them about every four days. The blood thinner is also given via a shot, like an insulin shot just under the skin. As glad as I am that its not in the muscle, its still a shot and we all know how much Mackenzie hates shots. And after her last leg shots, I told her she would never have any more shots. Today she will be having and EKG and a kidney test in preparation for transplant. Tomorrow she is scheduled to have total body CT scans and Tuesday the big bone marrow aspiration. COME ON REMISSION!!!!! I'm actually excited for Tuesday which is strange for me. You would think that I would be dreading it, but I feel as though I've already begun celebrating her remission. Everytime doubt tries to steel those thoughts, I put on the armour of God and cling to the words that the Holy Ghost gave me. All of our prayer request remain the same with additional prayers now for clearance of this blockage in her jugular vein, wisdom for her team of doctors on how to treat or if to treat this, and protection from any potential problems from this new development. HE CAN PROTECT, HE IS IN CONTROL. Keep calling on Him as we march into this battlefield singing praising to our amazing Father in heaven whom we place ALL of our trust. I'll try to update again later today when I know more about this new clot/obstruction issue. Keep PUSHing and PULLing. Love you all, Amy
Monday, April 16, 2007 2:10 PM CDT
Ugh... two more doses of steroids, I can't wait! Unfortunately, it will take a week or so for her to feel more energetic once off the steroids and it will take months for the "puffiness" to go away. Mack has gained about seven pounds while on the steroids which is a lot when you are only 33 pounds to begin with. Her new central line has been infusing well, but not drawing well. They ultrasounded all her vessels this morning and found a clot in her jugular vein. It is not completely occluded, there is still blood flow through the vessel. This was the location of her old port catheter, so now they are trying to sort this out. Seeing if more imaging needs to be done or if they will just treat the clot with medication. Please pray for protection today and wisdom for her doctors. Not an ideal thing to be on anti-coagulants when you don't have many platelets to begin with.
Mackenzie has progressively gotten more and more tired over the past couple days. This is more typical of her steroid course and I'm assuming her lethargy is from the steroids. Can't wait to get further and further away from the steroids. Tomorrow she will have her last dose of IV push vincristine (forgot that was REALLY the last dose of chemo for this course). And a week from tomorrow is the bone marrow aspiration...COME ON REMISSION!!!!!! Also asking prayers for strength and energy for Mack over this next week. Praying that she would be strong going into transplant.
The last few days have seemed long... I guess its finally hitting me that we have been inpatient for about twelve weeks... I think today is actually day 82. Keep praying as the Lord leads you, I'm sure there are other prayer requests and needs that I just simply haven't thought of. Let the Holy Spirit lead you. Much love, Amy
Friday, April 13, 2007 8:52 PM CDT
That's it! Chemo is done. Three more days of steroids. And a bone marrow aspiration the morning of the 24th. COME ON REMISSION!!!!!! Come on remission....come on remission! We BELIEVE in the healing power of our great God and continue to call on Him to see Mack through this journey. I believe the Holy Spirit spoke to me this week after a long, long period of silence. I believe Mackenzie will be healed. For some reason it is "scary" for me to write that, but He's prompted me to do so and therefore I will be obedient. I have no pride, it's not about being "right" or "wrong" or trying to predict what will transpire in the days ahead. Simply a display of my faith that runs so deep in a God who has been so faithful and trustworthy. So I'm laying down all doubt and I'm claiming the Word of God... and when doubt tries to creep up behind me and bring me down, I will claim victory in Christ. I will cling to Him and His promises and I will fix my eyes on His Great Love. Our HOPE has been IN HIM from the beginning of this journey. Doctors and statistics have failed us time and time again... BUT HE HAS NOT!!!! Join me in placing YOUR hope and trust in Him. What if we all laid down our doubts. Even all my medical friends who are reading this thinking "this is not possible" or "its so unlikely". Remember, we serve a God who MAKES ALL THINGS POSSIBLE. Surely He can heal Mackenzie and advance the days of her life. Blind trust is so hard for us, it's just not in our nature... it is something we must work at, BUT when we put the effort forth, it comes with intimate encounters with God that bless us beyond anything we could have asked for. It changes you, and your life becomes richer and fuller. You'll begin to see more meaning and purpose to your own life and contentment will begin to fill the areas of "unrest". FAITH... it is an amazing journey... a cycle that begins with belief and trust, followed by surrenderance and forgiveness. And in our brokeness AMAZING blessings that bring more joy and satisfaction than anything on this earth. I'm living it right now.
Mackenzie recieved two shots of chemo today, one in each leg. Afterwards, she walked out into the hallway pronouncing, "Katie did a wiwey good job on my weg shots!"
Does God's mercy get any more tangible than that? Mackenzie was riding her bike down the hallway this afternoon and saw her attending oncologist who had to do a "double take" because after all she has been through riding a bike would be the last thing he'd expect her to be doing. Does His grace get any more tangible than that? HE delights in giving us the desires of our hearts. Mack cleared her methotrexate (chemo) within 12 hours of the end of her infusion... this normally takes days. Is that coincidence? She is going on twelve weeks with an ANC of "zero"... no immune system at all. Is that humanly possible? Would you call that "luck"? Well, we are praising God for His power, His love, His faithfulness, His care and HIS PLAN!!!!
Steve and the girls made it in last night. Mackenzie's mood swings are tough on the girls. Tough on us all! Please pray for peace and calm to Mack's emotions. Continued prayers for healing of Mackenzies bone marrow, protection of all her organs and protection from all infections. He hears each and every prayer, join us at any time tomorrow as we stand together and bring our requests before Him during the 24 hour prayer vigil. See "previous journal entries" for the times and specific prayer request so we can all be praying together no matter where we are. We've grown to become a strong army together. Let's do it. Let's go and win this battle. Love you all, Amy
Thursday, April 12, 2007 8:16 AM CDT
You will all be happy to know, I am feeling much less irritated these days! Pheww... you would have thought I was taking steroids with Mack! Now I think fatigue has replaced the irritablity, feeling exhausted. Mackenzie's mood swings are so fast and furious it sucks the life out of me. Again, I say, AMAZINGLY she continues to feel well despite the moodiness. Her chemo will finish up tonight around 9pm... it is a very long 36 hours. And tomorrow will be the dreaded leg shots again, followed by four more days of steroids which will finish this chemo course. And then we wait...... Still thinking about the bone marrow aspiration around the 24th, but there has been some talk about doing it sooner. I'll keep you posted. Please continue to pray for protection of Mack's kidneys and liver as they have been working overtime! I think every medical person stands in awe that they are keeping up with all these drugs. And of course, continued prayers for protection from all infections, which we all stand in awe that Mack continues to thrive after 11 weeks of zero counts and no immune system. Its almost unheard of. Steve and the girls are coming down this evening, except for Lexie as she has a 101.3 fever. Please pray for healing for all the girls. It's been a rough year of illnesses for everyone. Praying without ceasing for clean bone marrow, destruction of every cancer cell in Mack's body and the sweet word "remission" to be declared. Mack's new "tubies" are working great and the old port site is healing. Praise the Lord for His constant care and provision! "We love you Lord!" Well, I better run. If you missed the last update, we are holding a 24 hour prayer vigil this Saturday through Sunday with specific prayer requests at each hour. Please join us in prayer any time during the day/night with each request. The power of prayer is beyond our comprehension! Much love to you all, Amy
Tuesday, April 10, 2007 8:15 AM CDT
*******3pm UPDATE***** We're back from the OR and Mackenzie did great. The new port was placed without any difficulty and they were able to pass it through the narrowed area so the tip is actually in the right atrium of her heart. Continued prayers for protection of her heart with this catheter in there. Praying that it doesn't cause any irritation or irregular rhythms. It was extremely difficult to take the old port out. The catheter actually broke in half. Praise the Lord, the part of the line left in Mackenzie was adhered to the vessel wall so it didn't migrate with her blood flow. Had it travelled, she could have died. Needless to say, there was a moment of panic in the OR. Please continue to pray for protection from any blood clots, infections, bleeding or any other complications from this line! Unfortunately, her doctors wanted to wait until tomorrow to start her chemo. Yes, another frustrating day for me, because there really is no good reason that she couldn't get it today as scheduled. I was told they want the "line to settle". Whatever. I still feel grumpy today. Praying that my attitude won't be so negative. Not much going on for the remainder of the day. They will start bicarb fluids tonight in preparation of the 36 hour infusion of methotrexate tomorrow. This is another chemo that is really hard on the kidneys and liver so keep praying for protection of ALL her organs! More tomorrow. Love, Amy*********
Mack had a restless night last night and I didn't get more than two hours of sleep. I think we both had insomnia on top of all the activity in the room. Her labs are stable this morning and yesterdays MRI showed nothing more than we already knew. (UGH... like salt in an open wound... waste of time, waste of money and waste of extra work for her kidneys and liver.) Ok, sorry, just had to get that off my chest and vent. We are still scheduled for surgery today to remove her old port and place a new double lumen central line. We don't have a time, but since she is an "add on", we can assume it will be later this afternoon. Please continue to pray throughout the day for protection for Mack and a successful surgery. I will try and let you know a time, but sometimes we don't actually know the time until they call and say "we're ready for her". If that is the case, I will update as soon as she is out of the OR. Also, wanted to share the information about the prayer vigil that will be help this Saturday until Sunday in the chapel at Northwest Community Hospital (where I used to work). If you live locally and would like to visit the chapel to pray for Mackenzie during those hours, please feel free. For all others, I am listing the hours with specific prayer requests so that we can all be praying for the same requests during the same hours no matter where we are at physically. Thanks again for your support that continues to amaze us. You'll never realize what a blessing you all have been. Gotta run... just got word, we're off to the OR... it's 9:20am Ohio time. Love you all, Amy
This prayer vigil was organized by the hospital where I used to work....although all of Mack's "prayer warriors" can't be there physically, it's a fabulous opportunity for everyone to join spiritually...from wherever you are. Pick a moment during the day and join us in praying for the specific hourly request...thank you for loving Mack and for lifting her up before our Heavenly Father.
24 HOUR PRAYER VIGIL
FOR MACKENZIE
April 14th - April 15th
12pm - 12pm
12pm-1pm - Destruction of every leukemic cell in her body / complete remission for transplant. That He would be in control of her bone marrow, filtering every cell through His hands so that they are perfect and "mature".
1pm-2pm - The perfect cord blood or donor cells to be chosen for transplant that her body would be able to accept without rejection and that would heal her bone marrow.
2pm-3pm - Protection and healing of her liver. Specifically that her ALT and AST would come down to normal, that her bili would hold steady and that her liver would be able to process all the drugs it needs to without further damage. That He would hold her liver in His hands and filter every drug for her liver so it can rest.
3pm-4pm - Protection from all infections and resolution of her fevers. Specifically, that He would place a shield of protection around her keeping her safe. That He would send His angels to stand guard over her and watch over her 24 hours a day. That He would not allow any harmful germ to enter her body while her immune system is wiped out. And that He would supernaturally give her body whatever it needs to fight off threats. Protection from all FUNGAL infections, all staph infections, all strep infections, all yeast infections, all viral and bacterial infections and any other threat to her body.
4pm - 5pm - Protection of her kidneys, that He would maintain their perfect function and ease their burdens as they process so many drugs,
5pm - 6pm - Protection of her bowels. That He would help the villi to continue to grow and function. That He would heal her bowels and protect them from "stripping out". That He would allow things to absorb normally and excrete as they should. That He would protect her from uncomfortable cramping or diarrhea or constipation.
6pm - 7pm - Protection of her heart and lungs. That God would protect and maintain their perfect function. The He would not allow these toxic chemos's to damage her heart or lungs.
7pm - 8pm - Protection of her brain. That God would heal the damage to the areas of the brain that the methotrexate has had an effect on. That He would stimulate pathways in the brain to heal her memory and retrieval difficulties and help her to learn and grow.
8pm - 9pm - For peace, mercy and grace for Mack. That He would continue to allow her to feel good despite everything she is getting that should be making her feel lousy. That He would reveal Himself to Mackenzie and pour out His love to her in tangible ways that she can see and feel. That He would continue to care for her tenderly.
9pm - 10pm - For her nutritional status to improve. Prayers that God would instill an appetite that doesn't make sense despite the drugs wiping out the appetite. That He would allow her to enjoy the taste and texture of her food. That He would help her to eat and drink enough for her body to not only be sustained, but to thrive. That she would not need additional support through IV nutrition (TPN) especially while her liver is in need of a rest.
10pm - Midnight - Wisdom, guidance and direction for the doctors.
Midnight - 1am - Strength, peace, healing and protection for me, Steve, our parents and our families.
1am - 2am - For Lindsay -
That God would take away their fears and give them an extra measure of piece. That He would fill the void in their lives while I am away. That He would wrap His arms around them and they would feel special and loved by God. That He would help them to know and understanding how much Steve and I love them. And that He would give them courage during times of uncertainty. That He would help them to focus and concentrate at school and keep up with their work. That He would motivate them and give them the strength to continue getting through each day.
2am - 3am - For Taylor -
That God would take away their fears and give them an extra measure of piece. That He would fill the void in their lives while I am away. That He would wrap His arms around them and they would feel special and loved by God. That He would help them to know and understanding how much Steve and I love them. And that He would give them courage during times of uncertainty. That He would help them to focus and concentrate at school and keep up with their work. That He would motivate them and give them the strength to continue getting through each day.
3am - 4am - For Kali -
That God would take away their fears and give them an extra measure of piece. That He would fill the void in their lives while I am away. That He would wrap His arms around them and they would feel special and loved by God. That He would help them to know and understanding how much Steve and I love them. And that He would give them courage during times of uncertainty. That He would help them to focus and concentrate at school and keep up with their work. That He would motivate them and give them the strength to continue getting through each day.
4am - 5am - For Lexi -
That God would take away their fears and give them an extra measure of piece. That He would fill the void in their lives while I am away. That He would wrap His arms around them and they would feel special and loved by God. That He would help them to know and understanding how much Steve and I love them. And that He would give them courage during times of uncertainty. That He would help them to focus and concentrate at school and keep up with their work. That He would motivate them and give them the strength to continue getting through each day.
5am - 6am -
For God's provision for our family. That He would continue to meet all of our needs, physically, financially, mentally, emotionally, and spiritually. Praying that He would work out the details of any state and federal funding to help us through this process. That He would bless all those who have generously and selflessly given of their time and resources to help our family. That He would find and provide a place for us to live together as a family here in Cincinnati for June, July and August.
6am - 7am - That God would prepare Mack's body for transplant. And that He would rid her body of cancer through the transplant process. That He would protect her from graft vs. host disease, protect her from all the detrimental side effects of total body radiation and that He would protect her organs as they endure more chemo wiping out every last cell prior to her transplant. That He would choose the perfect time for transplant.
7am - 8am - For God to sustain Mack's life. We asking boldly for His healing hand to lay on Mackenzie. That He would extend her days and breathe life and healing into her little body.
8am - 9am - That God would continue to build a network, a community, a family around us here in Cincinnati. That He would bring people forth to encourage us and help us during these difficult days.
9am - 12pm - Continued prayer and mediation...we humbly come before our Father and ask all of these things in the precious name of our Lord and Savior Jesus Christ.
Monday, April 9, 2007 9:12 PM CDT
Just a quick update because the computer is REALLY slow tonight. Mack had a good, but busy day. She had an angio MRI done of her chest to try and visualize the blockage in her superior vena cava. As I expected, they were unable to see anything more than they already knew. YES, I was battling today with the docs, it was a very frustrating day for me. Fortunately, it was done today though so that she can go to the OR tomorrow to have her port removed and have a new line put in. This would be the line that she would need for transplant anyway. Please pray for the surgeon tomorrow, that God would give her the skills and discernment as she places Mack's new line and removes the port. She will also have her ommaya tapped while she is in the OR and she'll get the chemo in her brain. She begins this last part of therapy and we have been pleading in prayer and believing in the healing power of our great God. Amazingly, she continues to thrive and feel great. She spends much time in the playroom and has made more projects than we know what to do with. She mastered bike riding and has now received special priveledges to ride her bike anywhere in the hospital during "off" hours when the halls aren't so crowded. She rode down to the gift shop the other day with her purse and was so thrilled to purchase a sticker book. Steve and the girls are coming down on Thursday night and she can't wait to see her sisters again. Not much else going on for now. Please, please continue to pray for protection from all infections, healing of her kidneys and liver and protection over all her organs. And of course, EARTHLY HEALING FROM THIS DREADFUL DISEASE! There will be a 24 hour prayer vigil held this Saturday the 14th through Sunday the 15th at the hospital where I used to work. I will post the specific prayer requests for each hour so that you may join along in prayer and storm the gates of heaven with us. Mack just got platelets and is getting ready to receive red blood cells in preparation for surgery tomorrow. I better run, its going to be a long night. Keep PUSHing and PULLing... your prayers matter! Love to you all, Amy
Saturday, April 7, 2007 11:14 AM CDT
I can't believe its been so long since I posted. Things here have been soooooo busy, but busy in a good way. I made it home and back uneventfully and was able to get new copies of our birth certificates and get my hair done (I feel like a new person). Mack continues to feel well, it's just mind boggling! She is scheduled to start this final part of therapy on Tuesday. A 36 hour infusion of methotrexate, an IV push of vincristine, chemo in her brain and the start of another week of steroids. This is it... the last hoorah. Her port has begun to give us more difficulty. We are thinking about a visit to the OR on Monday or Tuesday to take the port out and put in a new line (one that would need to be put in for transplant anyway, if she is able to go to transplant. Please begin praying for protection from infection as its never optimal going to the OR with no counts. Also, for a success line to be placed without any complications. Still looking at the 24th for her next bone marrow aspiration. COME ON REMISSION! "Heavenly Father, how difficult the waiting has been these past three months, BUT Your mercy and grace has been abundant. You have carried us and provided for us while tenderly attending to our every need. Oh God, we call out to you and plead for healing for Mack. When man says it's not possible, YOU say IT IS! We believe in Your healing power and we claim it for Mackenzie. Father, clean her bone marrow out and give her healthy cells. Breathe life into Mack, just as You did Lindsay. Advance her life here on earth and let her life bring You glory in all the days ahead. Unveil the eyes of others to see Your greatness! You are so good. Father on this particular weekend, we grieve with You knowing what You allowed Your son to go through because of Your love for us. The ultimate expression of love. There is none greater. And even though You knew Your son would be resurrected after three days, You still had to watch Him suffer. You saw, heard, and felt the pain of Your only son as He called out to You on the cross. Lord, Mack's suffering doesn't compare to what Your son endured. But you understand what it is like for us to watch her go through these trials. And like Mary, we have no idea what the days ahead will bring. And even though the uncertainty of Macks life wants to plague us with anxiety, we trust You, and we ask You to deliver her from this illness. Lord, let April 24th be a day of celebration. Let there be absolutely no detection of any leukemia in Mackenzie's body. And open the doors to transplant with a smooth transition that ONLY YOU CAN PROVIDE!!!!! Father, we are on our knees. At Your mercy. Asking, just as You told us too, for the desires of our heart. Asking and pleading for a complete earthly healing for Mackenzie. We love You so much Lord. Please continue to hold Mack's liver and kidneys. Restore their function and protect them from all harm. Watch over her heart and lungs, her bowels and her brain. Guard her organs from any threat. Give her doctors an extra measure of wisdom that comes only from You. Wisdom to care for Mack and make the best decisions for her care. Be in control here in room 535. Keep Your angels on guard and let Your presence be known. We praise You and thank You for Your relationship with us. We are so undeserving of ALL that You give us. Your faithfulness brings us an amazing amount of comfort during these dark days. Thank You for all the ways You have and continue to show us Your love. We give our lives to You. In Jesus name, Amen."
Wishing you all a very blessed Easter weekend and remembering ALL that HE has done for US!!!!!!!!! Much love, Amy
Wednesday, April 4, 2007 4:46 PM CDT
Oh what a day! Mackenzie continues to feel well. Her kidney (BUN level) elevated quickly today and her glucose levels are low despite her good appetite. No one quite knows what to make of it. They have started her back on IV fluids and we are praying that those numbers will be better in her morning labs tomorrow. Please pray specifically for protection and healing of Mack's kidneys and a decrease in her BUN level tomorrow. Pray that her little body can return to a state of homeostasis. Pray for God's divine protection and healing to pour over Mack.
On another note... we find ourselves in the midst of a spiritual battle. Somehow, a folder containing my whole life... birth certificates, SS#'s, check books, copies of all our applications for federal funding, etc. has gone MIA! We have no idea if it was stolen or left somewhere, but it is gone. Please pray for God's protection over this matter. CLEARLY, this is satans attempt at bringing us down. He'll do anything to discourage us and he loves to attack when we are weak and when our burdens are already so heavy. But, we are claiming victory in God's promises. If we can trust Him with our lives, certainly we can trust Him with our check book and SS#'s. Praying that the binder would find itself in the hands of someone who would do the right thing with the information within it.
Also, I'm flying home tonight... last minute to try and get new birth certificates and do some other errands. It's been quite the stressful day. Praying for safe travels and for angels to stand guard over this room tonight!!!!!
Gotta run and get to the airport. Keep praying guys... your prayers are powerful and they ARE affecting our lives!!!! We love you all. More tomorrow. Love, Amy
Tuesday, April 3, 2007 10:16 PM CDT
Mack had another good day. Her doctors continue to be amazed that she has had no immune system for nearly ten weeks and continues to thrive. "Praise the Lord!" We were celebrating big time today as Mack learned to ride her bike all by herself. Her PT brought some straps for her feet and pedals and off she went. She was so proud of herself!!!!
I've been meaning to share with you all what a successful benefit our friends held for Mackenzie last month. Between mail order kits and on site testing we had almost 800 people enter the bone marrow registry! Our goal was to reach 1,000 so if you haven't been tested and would like to be, please call 866-340-DKMS to request a free kit to be mailed to you. All you have to do is swab your cheek with the cotton swabs provided and return. You may just be the one to save another life! Also, thanks to the efforts of so many people they raised just under $15,000! Thank you to each and everyone of you who helped plan, or volunteered or attended the benefit! God bless you all! Rumor has it that another event is in the works for this summer... "Frenzy for Mackenzie". If you would like to help with this event or if you have other fundraising ideas, please email Laura at mlje8@netzero.net. I've included a link below to view pictures from the event. I believe we still have some suckers and "Lickin Leukemia" t-shirts left. If you would like to purchase any, e-mail Laura at the address above.
Click here for pictures of Mack's Benefit and then click view slideshow
Not much else going on here and its late, so I'm off to bed. Thank you so much for all your prayers. Our requests remain the same... protection from ALL infections, protection of her organs and HEALING OF HER BONE MARROW!!!! Much love to you all, Amy
Monday, April 2, 2007 6:05 PM CDT
Not much going on here. Mackenzie seems completely unphased by all the toxic drugs she has gotten. She continues to feel well and is actually enjoying her time here. Nothing much new on the agenda. All of our prayer requests remain the same. Looking forward to the girls coming back at the end of the week. Child life has planned a few fun easter projects for our family. It seems amazing to me that easter weekend is here. We have so much to be thankful for! More tomorrow. Much love, Amy
Sunday, April 1, 2007 7:19 PM CDT
It was a flurry of activity this week with the kids in town and Mackenzie was in her glory! She was wild and crazy and silly and LOUD all week long. We had a serious "jam session" with Brian, Mack's music therapist. We all wore crazy hats and played instruments and sung. Our soon to be released hit "5 little Monkeys" was top on everyone's list! For some reason, it always feel good breaking the rules... having 10 people in Mack's room, making LOTS of noise :-) We are so thankful for the exceptions they have made for our family and their sensitivity to Mackenzie. The girls were busy making projects with Mackenzie all week long. There is no more wall space left in Mack's room.
Mackenzie amazingly continues to feel well. The doctors keep checking in expecting the worst and finding themselves pleasantly surprised that Mack is still going strong. We all stand in awe of our great God! He continues to hold all her organs and has protected her in ways no one could. She is looking forward to tomorrow as she will be "free free" again. She will be off IV fluids for the week and said, "I can't wait to play with the best sisters in the world!" The girls and Steve are coming back at the end of the week. She also just asked me if she could have a new hairbrush for Christmas because she wants to give her old one to Lexie. Totally random!
Thank you so much for covering us in prayer this week. God's grace was abundant as we dealt with and continue to cope with very difficult circumstances. Mack has two more days of steroids and then and IV push chemo and then a week off before getting hit again. Please continue to pray for protection of her heart, lungs, kidneys, liver, bowels and brain. AND for protection from all infections! Looks like her next bone marrow aspiration will be somewhere between April 24-30. Please continue to pray for NO DETECTION OF LEUKEMIA CELLS!
Thank you also for being so patient with our updates as I was hardly on the computer this week. I hate to leave you all hanging and I don't like feeling disconnected. You guys have become such a HUGE part of our family and we love and value each of you! More tomorrow. Much love, Amy
PS To all Mack's teachers back home... she wanted me to tell you that she is doing 100 piece puzzles almost by herself now. She said, "my teachers be so proud of me". Miss you all!
Friday, March 30, 2007 12:00 AM CDT
*****1:20pm UPDATE***** After I wrote the entry below, I was checking my emaiL.... finally getting to some from several days ago. I was amazed at this email from my dear friend Jane, who sent this days ago, but I just read now. How amazing, especially reading that after what I had just wrote below! She writes:
I just read the March 28 "Streams"... not sure if you would have had a chance to, with the girls there. Several parts of it made me think of you and the place you are in right now. It's talking about how God commanded the priests to march through the Jordan River, carrying the ark of the covenant and how the waters parted after they had stepped into the river. It goes on to say:
"God honors faith - stubborn faith - that sees His promise and looks to that alone. ... Oh, for the kind of faith that will move ahead, leaving God to fulfill His promise when He sees fit! Fellow Levites, let us shoulder our load, without looking as though we were carrying God's coffin. It is the ark of the living God! Sing as you march toward the flood! ... One of the great essential qualities of the kind of faith that will attempt great things for God and expect great things from God is holy boldness and daring. When dealing with a supernatural Being and taking things from Him that are humanly impossible, it is actually easier for us to take a lot than it is to take a little. And it is easier to stand in a place of bold trust than in a place where we cautiously and timidly cling to the shore.
Like wise sailors living a life of faith, let us launch our ships into the deep. We will find that all things are "possible with God"."
Amy, this permeates the life you are living right now! You continue to put your faith, hope and trust in God... not in "horses and chariots" and statistics, percentages, and doctors' opinions. You are singing. Every day, when you choose to look for the blessings He's provided, you are singing. Your bold trust is pointing countless of people who may not know Him, directly to our great God. ************************************
It has been a very busy week here with all the girls visiting. Yesterdays meeting was difficult, but positive. Talking about death and dying is not an easy topic to talk about, but we certainly don't want it to be a "taboo" topic. Nor do we want it to be a "scary" topic. The girls had some questions, lots of tears, but laughter and good times too. Mackenzie continues to do well. Her liver numbers are nearly normal and for that we are praising God! She's definately feeling the effects of the high dose steroids and we see her getting weaker, but she's still up and about. The mood swings are also in full force from those "crabby meds". I just feel like we have so much to be thankful for. As difficult as these days are, God's mercy and grace has been more than sufficient... they have been abundant! Steve and the girls are heading home on Sunday and I think for now, they plan to come to visit every Friday through Sunday. We are trying to get them through the end of this school year, but we realize that we may have to pull them out if things change for the worse here.
"Dear Heavenly Father, I have so many thoughts swirling through my mind that I can't even sort them all out. Thank you for knowing each and every thought of mine, every concern, every heartache, every hope, every request, every fear, every desire, every sorrow, and simply every thing that is going on in my brain. Thank you for never leaving us. Thank you for comforting us and giving us the strength to get through each day. Thank you for flooding us with mercy and grace, giving more than we could have imagined. Thank you for loving us unconditionally through good and bad. Thank you for Mack's life. Father, you know the heaviness our hearts bear and you know the pain we feel at the mere thought of losing Mackenzie. This is not our battle Lord, but yours. We will stand still and wait upon You. Man cannot provide for Mackenzie's needs, but we KNOW that You can and we ask for Your healing hand to lay upon our sweet little girl. Almighty God, we continue to lay her at Your feet, trusting in Your care and surrending our lives to You. We believe Your plan is perfect and You know what is best for each of us. But at the same time, You have told us to come to You with the desires of our heart and therefore, we plead for You to lift this burden from us and heal Mackenzie. Let the Holy Spirit intercede on Mack's behalf pleading and groaning for healing. We believe in Your healing power and we accept Your Will for Mack's life, whatever Your Will may be. But along with our acceptance and trust, we hand over our requests for healing, our anxieties, and our pain, because we want to trade in our sorrow for joy and YOU make that possible!!!!! We love you so much God! My heart pounds with thanksgiving for all that You have done for Mack and Linds and our whole family. My soul bursts with gratitude for your faithfulness that has NEVER failed us! And my very being boils over with love for You, that I cannot contain. You ARE my all in all... You ARE all we need! You ARE sufficient! Father, please continue to hold Mackenzie's liver, kidneys, heart, lungs, bowels and brain. Protect each function as You designed it. Touch her bone marrow Lord, and let the blood that Your son shed for us infuse and engraft in Mackenzie marrow producing perfectly healthy cells. Father, we call out to You, we fall to our knees with praise because of YOUR greatness! Stay near and keep Your angels on guard. Shield Mack from every threat to her body. Protect her from all infections and give her the strength she needs to endure the road ahead. My words seem to fall so short of my feelings and my love and my gratitude for all you have done and all you are going to do. But YOU know my heart Lord, examine it again today. I love you so much! Amen."
Keep praying, more tomorrow. Love, Amy
Wednesday, March 28, 2007 5:38 PM CDT
This is just going to be a quick update because the kids are here and wanting every second of my attention. Mack continues to do remarkably well despite starting steroids and chemo yesterday. The next 4 weeks will be very rough on her and all her organs. Please pray for God's divine intervention to protect and hold each of Mack's organs...especially her kidneys and liver during these tough days of chemo when they are already taxed out. Also, MAJOR prayers for protection from ALL infections and specifically protection against fungal infections!!!! As always we continue to pray for healing and remission!!!! It will be by His power and His timing if remission occurs! Tomorrow morning the girls are meeting with child life to talk about death and dying. It's not a topic we like to talk about, but we don't want it to be a "scary" topic. We've made it very clear to the girls that we don't know if Mack is going to live or die. They will be making a table cloth together and building signicant memories during this time. Please pray for it to be positive experience for all of us. Yesterday my friend Allison came and brought Mack a new "big girl bike". Yes, her first two wheeler with training wheels. Decked out in her Dora helmet and Dora bike, Mack was riding in the halls and loving every minute of it! She is so proud of herself and so are we! Thank you Allison for those wonderful memories and for helping Mack to feel so special!!!! What a blessing our time was! Well, the steroids have taken over our sweet little girl and she is spazing out wanting to play webkins on the computer so I best get off before I get the full wrath! Thanks for all your prayers... it will be another long month of waiting and pleading for healing. More tomorrow. Much love to you all, Amy
Monday, March 26, 2007 1:00 PM CDT
*****10:30pm UPDATE***** After a very long day of deliberation with many, many doctors and much research, the doctors here have brought to the table a new protocol using three of the four "traditional" drugs with three addtional chemo's. We are so grateful for our doctors in Chicago who backed us on trying these more traditional drugs and were willing to treat Mack if they declined here in Cincinnati. The thought of packing up all of our stuff and going home to pursue treatment was overwhelming to me today, so we are VERY grateful that God took that off our plate. Mackenzie will begin therapy tomorrow. It sounds like they will do a biopsy on or around day 28 which is a little earlier than the protocol suggests, but we all know that IF we can achieve remission with these drugs, it won't last long and we need to be ready to move to transplant as quickly as possible. Its going to be a long hard month involving six BRUTAL drugs. So many prayer requests I don't even know where to begin. First, praise and thanksgiving for the doctors decision to treat Mack. This was a huge burden taken from us. "Thank You Lord!" Second, for protection and healing of her liver which will have to not only hold up through this next round which will be rough when it is already so taxed out, but then make it through transplant if she can get into remission. Third, for protection of her kidneys as they process all these drugs. Fourth, for protection from infection. It is amazing that she has had a "zero" ANC for eight weeks now. "We praise You Lord and thank You for protecting Mackenzie!" Fifth, for destruction of every leukemic cell in Mack's body and healing of her bone marrow. Sixth, for more mercy and more grace for Mack and our family. Seventh, for God's strength to carry Mackenzie through the months ahead and that He would uphold our family through these most difficult days. Eight, for continued wisdom and guidance for the doctors and again, thanking Him for giving us all direction today! Ninth, for understanding and peace for Mack's sisters who are holding up well, but have so much on their plates at such tender ages. And tenth, praising Him for all of you who continue to walk with us, cry with us, grieve with us, celebrate with us and call out to the God of ALL creation, the Great Physcian, who is more than capable of caring for and healing Mackenzie. We have grown to love you all sooooooo much it amazes me! Well, my head is pounding and its late, so I'm going to try and get some rest. More tomorrow. Love to you all, Amy********
Gosh, this is so hard for me to write. We got the carpet ripped out from underneath our feet once again. Mack's biopsy results came back showing that her leukemia is growing in "patches" in her bone marrow and so the big picture looks much worse than what the flow studies showed. They must have hit a "good" area when they aspirated cells from the study and therefore they don't feel the clofarabine is working. There is nothing else they can do for her. We've asked if they would try the four "traditional" drugs that originally put her into a remission when she was diagnosed, knowing that it is very unlikely that they would work as her cells have built resistance to these drugs. But, knowing in some very rare cases, it has worked. It's just one of those doors we don't want to leave open. We understand Mack's days are very numbered, but since she is feeling so well and thriving, we don't feel it is an unreasonable request. We are waiting for the doctors to tell us if they are willing to try that or not. If not, we would need to make many decisions. Praying for God to take that off our plates. I don't know what else to say. I feel such a void already and the pain runs so deep. Please pray for our family as God leads you... all of us. More later when we hear back from the doctors. Much love, Amy
Friday, March 23, 2007 8:58 PM CDT
***SAT 3/24 12:00pm UPDATE***** JUST A QUICK REMINDER THAT TODAY IS THE BIG FUNDRAISER / BONE MARROW DRIVE BACK HOME. PLEASE SEE THE FLYER ABOVE FOR DETAILS. WE DESPERATELY WISH WE COULD BE THERE TO THANK YOU ALL FOR YOUR INCREDIBLE SUPPORT. KNOW THAT WE ARE PRAYING FOR THE EVENT AND ANXIOUS TO HEAR FROM THOSE WHO ATTEND. WE WILL BE THINKING OF YOU GUYS ALL AFTERNOON TODAY! MACKS LIVER NUMBERS ARE STILL HIGH 208...NEEDS TO BE 100. KEEP PRAYING! MORE LATER. LOVE, AMY*******
I know you guys have been waiting all day with us for Mack's bone marrow results, and I apologize it has taken me so long to get to the computer. I've been on the phone with family and talking with nurses and doctors for the past several hours. Mackenzie's bone marrow showed improvement, but not remission. Our knee jerk reaction to this news was discouragement, but we are grateful that the Clofarabine appears to be working. I guess it is a drug that "chips away" at the leukemia rather than wiping it all out. And remission does not usually occur with the first round. The studies actually report 2-11 rounds of Clofarabine before remission occured. So when we got here in January, I think she had 86 lasts in her marrow and after the Mitozantrone, she had 44 nd after this round of Clofarabine, there is still 12 As we still pray for that less than 1/10 of a percent after this next round of therapy, she will be eligible for transplant if she can achieve less than 5 lasts in her marrow. It was hard to hear the doctors talk about this being "it". If the Clofarabine does not put her in a remission, then they couldn't offer any treatment with the goal being a "cure". They could only offer treatment to prolong her life and reduce suffering. We all like having that ONE egg left in our basket... NO ONE wants an empty basket and today I felt like we pulled out that last egg. It was scary. UNTIL I realized I still had the biggest egg left in the basket and HE will ALWAYS be in my basket. And when I surrendered Mack again, handing her over to God, fully trusting in His care, I was infused with peace. His plan is perfect. His timing is perfect. He is sufficient. He is able. He is powerful. He is merciful. He is loving. He is caring. He is all we need. And so I'm grateful for another day with Mack. I'm thankful that she feels well and is enjoying every day here. And I'm still trying to live in the moment so that I don't waste these precious days.
So the plan is to start the next round of Clofarabine as soon as her liver is recovered enough. Ideally, we would have liked to have started today... the sooner, the better. Mack's doctor doesn't think her liver will be ready until Monday, but they are ready to begin tomorrow if her liver numbers were down. Please pray tonight, specifically that her ALT would be less than 100 and that Mackenzie could start her therapy tomorrow. Continued prayers for God to hold each organ and protect their functions and pleading for healing of her bone marrow and destruction of every last cancerous cell in her body so Mack can move forth with transplant. COME ON BONE MARROW! Praying that the blood of Jesus would infuse Mack's marrow and cleanse every cell, healing and restoring her health.
Steve, my dad and the girls are coming down tomorrow for the week (spring break). I am so excited to spend time with my family! Please pray for protection, safe travels and a good week together building into our relationships and restoring what separation has taken from us. We are so grateful for your prayers. Please continue to carry us through this journey. We need each and everyone of you. Your prayers are impacting our lives. Your prayers are playing a HUGE part of this road we are travelling. It would be so much darker without your prayers. Thanks for walking with us. More tomorrow. Much love, Amy
Thursday, March 22, 2007 10:54 AM CDT
*****7pm UPDATE***** I still am not sure of an exact time of Mackenzie's bone marrow aspiration and biopsy, but I do know it will be in the morning. As I mentioned earlier, we will have some results tomorrow afternoon, but we will need to wait until Monday for the numbers which will determine where her treatment goes from here. We are very excited about Mack's benefit/bone marrow drive this Saturday at Cotton Creek School in Island Lake, IL from 3-7pm. So much work has gone into this drive our words could never express our gratitude. If you are able to attend the event, please pass along our grateful hearts to all the volunteers who have made this possible. We really wish we could be there, many of our friends and family will be attending and we'll be thinking about you guys all afternoon and evening. Please help spread the word to family and friends and help make this event a big success. The specific information is listed above on the benefit flyer. I'll try to write first thing in the morning when we know an exact time for her procedure, but please continue to pray for healing of her marrow and "deep remission"! More tomorrow. Much love, Amy****************
Mack's down in the playroom, so I thought I'd take a moment to give you a quick update. She is still feeling well, as a matter of fact, every day here has been a party. Last night she had on a pair of Mickey Mouse ears that light up and while she was running around the room, sh opened the door to her room and yelled out into the hallway "Its party time".
Her CBC is pretty much unchanged although her ANC actually went back to "zero". Although her bone marrow is sluggish, it is showing some signs of recovery and so the bone marrow aspiration for tomorrow is still ON!!! I don't have an exact time yet, but it will most likely be between 10 and 12 tomorrow morning. Please pray specifically tonight, that there would be enough cells in her bone marrow to sort out what its doing, and that NO leukemic cells would be detected. We will have some results tomorrow afternoon, but the more important results will come on Saturday (hopefully we won't have to wait until Monday). I think that's all we'll pray for tonight. Healing of her bone marrow and perfectly healthy cells to be seen in the aspiration tomorrow. Thanks again for your relentless prayers which continnue to carry us along this difficult road. I'll write again later today when I know more information. Much love, Amy
Wednesday, March 21, 2007 4:55 PM CDT
Not much new going on here. Mackenzie's CBC was pretty much unchanged from yesterdays. I think the bone marrow aspiration on Friday is unlikely, but things change so quickly here, you never know. She's been playing all day and having fun as usual. We continue to stand in awe of God's mercies! This morning my mom asked Mack if she could make a wish and have anything in the world she wanted, what would she like? Her answer... "to marwee Ace"... My mom then went on to ask her if she knew what it meant to be married and she said, "'tissing and havin' babies". We were cracking up.
Please continue to pray for healing of Mack's bone marrow, production of healthy cells, and protection from all infections. Her liver numbers are still high, but continue to decrease every day. Praise the Lord! We are so grateful for all of your prayers... keep on your knees! Much love, Amy
Tuesday, March 20, 2007 3:26 PM CDT
Mack had another good night last night and continues to feel well. We are just amazed at how she is thriving here. Yesterday she woke up and asked me, "Mom, do you wike 'dis hopal? I lub it here!" God's grace is so undescribably amazing! She never asks about home, she's having so much fun here. She is so happy and content. I can't think of a greater gift. My eyes well with tears of joy because she has so much joy in her heart despite the circumstances. She has taught us so much! This morning Mack's CBC showed some signs of recovery. I think everyone was a little caught "off guard" as we weren't expecting her bone marrow to begin recovering for another week or two. The cells seen this morning look good, but it's too soon to know if the blast cells will begin to "show up". If her CBC tomorrow and Thursday continue to show signs of recovery then she will have a bone marrow aspiration on Friday to see how her marrow looks. Otherwise, possibly sometime next week. Praying for DEEP remission. They are anticipating another round of clofarabine if her marrow shows improvement, but not remission. Of course, if she was in a deep remission, then I believe she'd go to transplant. I'm just keeping it all in an open hand before God. Not trying to "figure" out what any of that means or "predict" the future, just staying in the moment. Thanking Him for these good days, pleading for healing and accepting whatever His plan for her life reveals. Sooooooo glad He is in control, it brings me such peace and confidence that we will be "ok" no matter where this road ends.
Please continue to pray for destruction of the cancerous cells and production of healthy cells, for continued signs of bone marrow recovery, for a clean bone marrow aspiration showing deep remission, for wisdom and guidance for Mack's doctors, protection from all infections, healing of Mack's liver and protection of her liver as it processes all the treatment ahead. Thanks again for continuing to carry us on this journey. We are so grateful for each and every one of you!!!! More tomorrow. Much love, Amy
Monday, March 19, 2007 8:14 AM CDT
*****2pm FINALLY POSTED NEW PICTURES IN THE PHOTO ALBUM, CLICK ON "VIEW PHOTOS" ABOVE*********
Thank you guys for being so patient while I did not post over the weekend. We were busy thoroughly enjoying ourselves with family and friends. Mackenzie played hard all weekend with her cousins and is looking forward to her sisters coming down next weekend to spend the week here. She remains fever free, eating and drinking well, while her liver numbers continue to decrease. AMAZING!!! I would say those are three HUGE direct answers to our prayers. Although her liver is looking better, it still needs recovery and we ask that you continue to pray for God to guard, protect and nuture her liver back to the perfect function it was when He made it. As always, prayers for protection from infection remain high on our prayer request list as her immune system is wiped out and she has no counts. We are back to the "waiting phase" of this therapy. Waiting for counts to recover to give her some immunity and waiting to see what type of cells she recovers with. Praying, with every bit of strength within us, that the blood of Jesus would infuse Mack's marrow and cleanse it and heal it! It will most likely be several weeks before we see any count recovery. Also praying specific prayers for destruction of every cancerous cell, that God would STOP her body from producing any blast cells, that He would restore the perfect function of her bone marrow and filter every cell through His hands. As Mackenzie recovers, her body is requiring frequent blood and platelet transfusions. Thank you Martha and all those in the Cincinnati area who have volunteered to give platelets for Mack! What an amazingly selfless act of giving!!! We are most grateful for this gift as it will continue to be an ongoing need.
Also, taking a moment to praise God today for the mercies He continues to pour out to us. Dina... the other day when the word "flood gate" kept coming to mind... the flood gates have been opened and His mercy has rushed over us. So often, we ask God for things, and then we go about our business never acknowledging or thanking Him for all He has done. So today, we are praising Him for His power which has the ability to heal, His faithfulness in meeting all of our needs and bringing so many people into our lives along this journey, His goodness in tenderly care for Mack, His mercy which we've experienced in abundance and His answers to so many of our prayers. "Thank You Lord for all you have done and thanking you in advance for all You are going to do! We love you, Lord! Amen."
Not much on the agenda today after all the activity over the weekend, we'll probably have a little withdrawl. Thank you all for your commitment to praying for our little girl, and the love you continue to show her and our family. More tomorrow. With very grateful hearts and much love, Amy
Friday, March 16, 2007 8:51 PM CDT
Mack had a great day today after a long night last night. She was having port problems again, and we thought she might have to go to the OR to take the old port out and put a new access in. Our "old" needles for port access arrived today and were a resolution to the problem. Hooray! She had no fevers today, was eating pretty good and was wild and playful. My brother and sister-in-law and their kids came down this afternoon and Mack had a great time playing with her cousins! She's completely worn out now and sleeping tight. Her liver enzymes are still very high, but coming down. Praise the Lord for His provision and protection over Mackenzie's liver!!!! It will be another long month of waiting for Mack's bone marrow to recover and see what type of cells it begins to produce. We are constantly approaching the Throne, asking for His hand of healing on Mack's bone marrow and for healthy cells to pour out when it starts up again. Please continue to pray for protection of all Mack's organs, protection from infections and healing of her bone marrow. That He would filter each cell through His mighty and powerful hands, preserving their perfect function as He intended. This illness has no authority over Mack, HE is in control! As we wait, we continue to place her in the Hands of our gracious Lord, trusting in His constant care and asking that He would be merciful. And pleading with Him for His agreeance to continue to entrust her to Steve and I, that she may remain a part of our earthly family. And praising Him for her salvation, and His relationship with us, that we may have eternal life with her someday. And trusting in His plan for her life, willing to submit to His plan, knowing it is perfect and best for Mackenzie. He is good! Please join us in praying for perfect and healthy cells to be produced in Mack's marrow.
You guys continue to amaze us with your support. I had to use a big canvas bin on wheels to roll all of Mack's mail and packages over from the post office today. She really hit the jack pot! She was elated! She thought it was Christmas. Thank you for continuing to bring so much joy to our little girl. She is thriving and stimulated by all the things you have sent her. Thank you for helping to pass the days and for bringing excitement to each day and something to look forward too! What a blessing you all are in our lives! I can't imagine going through all of this without you guys. Our hearts continue to overflow with gratitude. We love you more than you will ever know! Thanks for being a part of our family. More tomorrow. Much love, Amy
Thursday, March 15, 2007 12:20 AM CDT
Last night was a long night, but Mackenzie seems to be feeling better today. I can't help but wonder if she had/has what the other girls have. Taylor is still home from school, coughing and feeling run down. Lindsay started her fever yesterday which evolved into vomiting and arrythmia's. Steve was supposed to fly in to Cincy this morning, but thought he was going to have to take Linds over to the hospital, so he delayed his flight. Praise the Lord, Lindsay converted on her own this morning around 6am!!! I think that arrythmia lasted almost 18 hours. She also if feeling better today, just weak and tired.
Mack got platelets in the night (thank you Beth, for donating for Mack) and her liver enzymes were down a little today, but still extremely high. Please pray specifically for her liver to recover, for God to protect its function and help it to heal and for her ALT and AST to come back to normal levels. Mack's fever has been subsiding... not sure if its gone yet, but its been nearly twenty four hours and only one dose of tylenol which was a pre-med for her platelets. Time will tell. Her appetite is definately curbing off and we're asking God to help her food to taste good to her and increase her desire to eat. The IV nutrition is really hard on your liver and her liver needs a rest. Please continue to pray for healing of Mack's bone marrow and for every last stinkin' cancer cell to be destroyed!
I had my phone interview this morning and Mackenzie was approved for medicaid which will automatically hook her into some other state funding here in Ohio. Yea God! Still waiting to hear from social security. What an amazing weight off my shoulders to know that when her insurance runs out, we will have help to cover this enormous bills.
I've heard the plans for Mack's benefit/bone marrow drive on the 24th are going well and the businesses in town are very supportive. We are so grateful for the town of Wauconda and its neighboring areas... for all those who have rallied around us to help lighten our load. You are all amazing! Thank you!
Not much else for now. I'll try to write again later this evening... keep praying and clinging to the cross with us! Much love, Amy
Wednesday, March 14, 2007 9:05 AM CDT
***8pm UPDATE**** The doctors here have been uncomfortable with Mack's fever and have added another antibiotic and increased her dose of fluconazole (for yeast). She still looks good to me, happy, playful, eating... but with "no counts" for over six weeks, these sorts of things are life and death. Things can change very rapidly in this state. Her liver has also taken a MAJOR hit with this last chemo. Asking specific prayers for healing of Mack's liver and protection of its function. Also, for His divine hand to protect her from all infections. Normally, I would be "freaking out", but feel complete peace about God's control over Mack's medical course. We trust Him and we accept His plan whatever that may be. We hold her in an open hand before Him and place her life in His hands and in His control. We are so grateful that she is not suffering. She is so happy... I couldn't think of a better portrait of AMAZING GRACE!!!!! There was some scheduling problem with our interview today and it was rescheduled for tomorrow at 10:15am. Steve is supposed to fly in tomorrow morning, but Taylor has had a fever and cough and Lindsay has started with a fever and vomiting at home. This is never good for her heart. Just clinging to the cross and letting the world crumble around me. We are safe in His arms! Sometimes I marvel at the EXTREME circumstances of our lives and how much has been placed on our plate. I long for the day when the clouds break, the sun shines and our season of "harvest" begins. Please pray as God leads you tonight. Especially for Mack's liver. More tomorrow. Much love, Amy**************
It was a busy night last night. Mack spiked a fever again and so the fluids, IV antibiotics, chest xray, frequent vital signs, UA, etc kept us up all night. The fever is concerning for many reasons... especially with her counts being "zero". She had significant exposure to Taylor the day she came down with her fever and Taylors fever has evolved into a horrific cough/cold. Now Lindsay has the fever too. Please pray for God's healing to lay on Mack. She looks good and she feels pretty good besides being very tired, but without counts anything can be life threatening. Praying specifically today for protection of her lungs and resolution of her fever. Also, destruction of every leukemic cell in her body. Today was the first day that her CBC showed no blast cells. As we are grateful for that, we just continue to lay her at the cross and look to Him for HOPE. We've already experienced "false hope" in those numbers and we know her prognosis has never changed from day one. He knows exactly how many days our sweet girl will reside on this earth. We continue to trust in His plan and cling to His promises to care for our family, to never leave us, to carry us through, and to continue pouring out His mercy and grace on Mack. I'm having a telephone interview with the state today for medicaid at 10:15 Cincinnati time. Please pray that all goes well, that I can accurately portray our situation and that Mackenzie would be approved for federal and state funding. Gotta run, but I'll write again later today. Much love, Amy
Monday, March 12, 2007 11:13 AM CDT
***Tues 7pm*** Decided just to add a quick note here because there really isn't much going on. Mack finished her five days of chemo, and once again, made it look like a walk in the park. She is happy and playful, but the chemo doesn't seem to be attacking the leukemia. It is still early though. We are grateful for God's mercy and grace in these dark days!!! Please continue to pray for healing, wisdom, guidance, direction, peace and protection. We love you all! More tomorrow. Love, Amy********
Good morning. We had a busy weekend with family in town, and it was wonderful to spend time together as a family. Taylor ended up getting a fever and when you are functioning at your threshold, these sorts of things become very stressful. Just grateful for the small chunks of time we were able to enjoy together!!! This afternoon is Mack's last infusion of the clofarabine. She seems to be doing well, just more tired today. I have no idea what her labs look like because I have decided not to "hang" on those daily numbers. For those of you who know me... this is a HUGE surrendering!!!! The medical side of me has an unsatiable curiosity and the human/mother side of me wants to grab on to any hope or reassurance I could find in those numbers. My heart knows that my hope is not in numbers or statistics and therefore I have just "let go". Once again, I have found that surrendering results in more peace. You would think by now it would be easy for me to do, but for some reason, giving up control is never easy... I have just learned the blessings that come from surrendering are so good and so consistent and God's faithfulness in caring for us over all these years has resulted in a very deeply rooted trust in Him. We are so grateful for God's continued mercies and His amazing grace that we see daily. I know we all desperately want to try and "figure out" God's plan for Mack. Trying to see "ration" in things and "justification" such as, "He wouldn't get her this far if He was going to take her" or "He wouldn't have brought us to Cincinnati if He was going to call her home" or "She touching so many lives, surely He will continue to use her life through healing"... I'd like to caution you all and encourage you to "let go" with me. He never intended for us to fully understand Him. Our human minds will never be able to grasp His greatness. Things don't have to make sense, the "unknown" helps our faith to grow. We just need to rest in Him, knowing that He is capable and able to meet all of our needs along the way. We have had the honor of experiencing His faithfulness in many tangible ways over the last twelve years and I can tell you with all sincerity that HE IS TRUSTWORTHY! I have no idea what His plan is for Mack. He has not revealed that to me yet, but I know He will see us through and He will sustain our family no matter where this road leads. If I can trust Him and surrender to His Will, surely you can too! This doesn't mean we're "giving up". Just letting Him do the work He needs to do in us all, without getting in His way. Believe me, we are still at the foot of the cross pleading for healing for Mackenzie and begging for Him to see the bleeding desires of our heart. Praying for His Will to align with ours, but at the same time, holding Mack in an open hand before God and being willing to accept whatever His plans are for her life. We KNOW they are perfect, better than our plans, even if they don't make sense to us right now. This is faith in action. Please continue to pray for protection of all of Macks organs... liver, kidneys, bowels, heart, lungs and brain. And continued prayers for protection from all infections during this most vulnerable time when her immune system is "wiped out" again. And lastly... calling out, with all we have within us for destruction of every last leukemic cell in Mackenzie's body. We know, without a doubt, that God has the power to heal and He understands what is going on in her body, He knows exactly what her little body needs. We are so glad He loves her immensely and His care is tender and merciful. "Thank You Lord!" We are praising Him for all He has done for us and all He is going to do!!! Keep PUSHing and PULLing, but at the same time... surrendering! More tomorrow. Much love, Amy
Saturday, March 10, 2007 7:41 PM CST
Just a quick note to let you know that we are doing alright. Steve, the girls and his parents came down yesterday and we have been busy sharing tears, lots of love, laughter and good times as we have much to make up for!!!!! Ohhhh, how I miss those girlies!!!! They will be leaving tomorrow afternoon. Mack's been hanging tough... three infusions in and two to go. Continuing to hold her in an open hand before God, pleading for healing, but willing to accept whatever His plan is for her life. She's on steroids again, so she'd been a little more moody, but overall, we still see that infectious smile multiple times a day. She has been loving every minute of spending time with her sisters! I'm amazed at the love and bond they share. Please continue to pray for protection of Mackenzie's liver, kidneys and bowels, heart, lungs and brain. Her ANC was actually 320 today, but that's about to go back to "zero" for the next month. Praying specifically for protection from ALL infections during this most vulnerable time. Praising God for His incredible mercies which continue to rain down on us. Praising Him for your incredible, love, support and devotion to our family. Praising Him for His unwaivering love and care for our sweet Mack. Thanks again for continuing to PUSH and PULL even when it is draining and exhausting. What an incredible gift you have given us! We love you! More tomorrow eve, after things "settle down" here. Much love, Amy
Thursday, March 8, 2007 4:17 PM CST
I can't believe its dinner time, I feel like the day is just beginning. Mack has her new chemo running and seems to be doing ok with it so far. She will get it once a day for the next five days. Still asking prayers for protection of her liver, kidneys, heart, lungs, brain and bowels. This chemo has some very toxic effects... hoping its manifests in destruction of the leukemic cells! So much going on back home with the fundraiser / bone marrow drive for Mackenzie on March 24th from 3-7pm at Cotton Creek Elementary School in Island Lake, IL. Here is a little info from my friend Laura who has been organizing this all:
So, let me tell you about the fundraiser. Things are going very smoothly now! We have received soo many donations. We will be selling food (pizza, hot dogs, chips, candy, drinks), HFM bracelets, Lickin Leukemia t-shirts that show the suckers and it says I'm a sucker for Mackenzie, the suckers, educational toys. We have the band playing for us. We have an interactive nascar race going to be set up where kids/adults get to steer a full sized wheel to control a two foot car along a race track...apparently the sounds are realistic and the cars crash...but do no burn!
DKMS is sending 10 phlebotomists for the drive. We are going to have about 60 volunteers at the event and are hoping for 1000 participants. It has been a lot of work getting it all together...but the Lord has definitely had his Hand in it. He has pointed us in the right direction every time!
The raffle is going very smoothly...I can't believe some of the prizes...a three night stay in Hawaii, a two night stay at the Kalahari (Dells), a week stay in Scottsdale, AZ, and a weekend getaway in norther Wisconsin. We have soo much stuff to raffle off.
All school children at Robert Crown, Cotton Creek, WGS, WMS, Transfiguration, St. Francis, Young Scholars, The Learning Tree, Lots of Totsand Messiah Preschool have received flyers. We have it on flyers all around town (Island Lake, Wauconda, Fox Lake). Star 105.5 will broadcast for us next week, and possibly US99, 102.3, K-Love, WMBI and the Loop.
WOW! Thank you Laura and everyone who has helped with this event. If you would like to help spread the word please email Laura at mlje8@netzero.net to have a flyer emailed to you that you can copy and pass around. Or if you would like to help with the event, or make a donation for the fundraiser contact Laura at the email address above. I'm still trying to get the flyer posted on this site, but having computer issues, so thought I would at least share the information. Mark your calendars and help us make this fundraiser/bone marrow drive as successful as possible. I am in awe of all the work that has gone into this. Please spread the word and encourage everyone to be tested at the drive... there will be no charge for bone marrow testing. We need your help! This was another message I had from Laura today. Instead of trying to explain it myself, I am just reposting her message here. I believe Oprah doesn't know what she is in for!!!!
Hello Amy,
I am using your site now to reach ALL of our prayer warriors. To the many faithful Mack followers, I am writing to ask a favor. I have found out that Oprah Winfrey wants to grant a wish for someone living in the Chicagoland area. I am attaching a link and asking you all to write to her. My request is that she help us in our efforts to find a match for Mack's bone marrow transplant. Once she goes in remission, she'll be eligible for this. (IF you have questions about the drive or want to donate, please email me) I am asking for Oprah to raise awareness about Mack and help strengthen our army of prayer warriors and lastly, I am asking for financial help for the family. Oprah will pick one wish to grant. My hope is to flood her office with many requests to help Mack. I know that she has already received at least 20 requests. Please lets encourage her to help little Mack and the Johnson family.
Here is the link:
https://www.oprah.com/plugger/templates/BeOnTheShow.jhtml?action=respond&plugId=256400006
Thank you all in advance.
May God continue to bless you all for all that you have done for this amazing family.
Ok guys, mark your calendars for the 24th we really need your support at this event! And what the heck, let's flood Oprah's office! Thanks again for all you do! Keep PUSHing and PULLing!
Much love,
Amy
Wednesday, March 7, 2007 11:04 AM CST
*******9:45pm UPDATE***** I never know quite how to start my entries, because its just so hard to express and explain all that goes on here. The doctors met today to discuss Mack's case. The protocol that will be open here in a matter of weeks will not be available for Mackenzie since its not "technically" open yet. I think I was disappointed in this decision thinking that the two drugs would be better than the one drug and I think Mack's doctor felt a little the same way. Not everyone voiced their opinions on what they thought would be best for Mack, but the ones who did was very split. It was not a "majority rule" which would give us the opportunity to use the study protocol even though she would not be a part of the study. In my disappointment, because I really thought the decision would come down to one that we would have to make, I realized that I prayed for an undeniably clear decision and it doesn't get more clearer than just one option on the table. I have to trust that this is the right decision for Mackenzie. That doesn't mean that I'm trusting it will yield a "cure"... I'm trusting that His Will is best for our lives and I'm doing everything I humanly can do to follow His will. So Mackenzie will begin five days of clofarabine (by itself, not in combination with any other drug) tomorrow. She continues to feel good and is truly thriving here. She loves this place, she loves these people and so do we. We talked about the option of going to another institution to try clofarabine in combination with two other chemos. A different study that would be open to Mackenzie. Ultimately, we feel God has lead us to Cincinnati and He has given us a family here... whether it is a family to rejoice with us in healing or grieve with us in a loss, He has given us a gift in this place. That gift is valuable and meaningful to us and we don't want to move her care elsewhere. Thank you for praying for wisdom and direction in Mackenzie's care. Changing our focus of prayer back to Mack now, asking for protection of all her organs, protection from infection and tolerance to this new chemo. Also, continuing to plead for healing. Please pray for destruction of every bit of leukemia. Back to praying 110 percent for less than 1/10 percent in return! Thanks again for your amazing support. We love reading all the messages, keep them coming! Many, many blessings and tangible expressions of grace over the last couple of days. Mack learned how to swallow pills!!! For the girl who couldn't brush her teeth for two years because she had the worse oral aversion that I have even seen to be swallowing HUGE pills is an incredible expression of mercy! Also, yesterday Mackenzie had to have total body scans to make sure there was no "hidden" infection brewing anywhere and she had to drink contrast. In the past, she has never been able to palate that. It also results in sedation, NG tube placement and given the contrast via NG. I was sick thinking about that. Well, guess what, Mack chugged that contrast in two minutes flat. Again, amazing grace! "Thank you Lord!" More tomorrow. Much love, Amy
*****I was just reminded of this verse that we claimed for Mackenzie when she was first diagnosed. It reads, "Though you have made me see troubles, MANY and BITTER, you will restore my life AGAIN;
from the depths of the earth you will AGAIN bring me up." Ps. 71:20 Still waiting to hear from the docs.******
Well to say that yesterday was my "breakdown day" would be an understatement... I think I went through three whole boxes of kleenex myself. It felt good. We had many long discussions with our doctor last night. We had more bad news with the biopsy results of Mack's marrow. Although her flow studies show that there is approximately 44eukemia left, the biopsy shows that we are in the same spot as when we came here. The chemo they gave her did nothing. A team of about thirty doctors will be consulting this afternoon about Mackenzies case. We are asking for consideration to pursue a "study" that this hospital will be launching sometime in the future. It is written out and in the "paper work" process. This combination of drugs (clofarabine and ara-c) has shown fairly good results in adults and older children, but has never been given to a child as young as Mackenzie. It carries some very serious side effects and complications. I ask for your prayers today specifically for God's presence to be in that room of doctors. That He would give a small measure of His infinite wisdom about Mack's body to the doctors and that their hearts and minds would be prepared to receive this wisdom. That is our only request today. Clear wisdom and guidance at this fork in the road. My devotional this morning was from 1 Chronicles 17:23 "Do as you promised... that your name will be great forever"
This is one of the most blessed aspects of genuine prayer. Often we ask for things that God has not specifically promised. Therefore we are not sure if our petitions are in line with His purpose, until we have persevered for some time in prayer. Yet on some occassions, and this was one in the life of David, we are fully persuaded that what we are asking is in accordance with God's Will. We feel led to select and plead a promise from the pages of Scripture, having been specially impressed that it contains a message for us. At these times, we may say with confident faith, "Do as You have promised." Hardly any stnace could be more completely beautiful, strong, or safe than that of putting your finger on a promis of God's divine Word and then claiming it. Doing so requires no anguish, struggle, or wrestling but simply presenting the check and asking for cash. It is as simple as producing the promise and claiming its fulfillment. Nor will there be any doubt or cloudiness about the request. If all requests were this definitive, there would be much more interest in prayer. IT IS MUCH BETTER TO CLAIM A FEW SPECIFIC THINGS THAN TO MAKE TWENTY VAGUE REQUESTS.
Every promise of Scripture is a letter from God, which we may plead before Him with this reasonable request; "Do as you promised". Our Creator will never cheat those of us of His creation who depend upon His truth. And even more, our heavenly Father will never break His word to His own child. "Remember Your word to your servant, for you have given me hope" (Psalm 119:49) This is a very common plea and is a double argument, for it is "your word". Will You not keep it? Why have You spoken it, if You will not make it good? "Your have given me hope" Will You now disappoint the hope that You Yourself have brought forth within me?
Being fully persuaded that God had power to do what he had promised. (Romans 4:21) It is the everlasting faithfulness of God that makes a Bible promise "very great and precious" (2 Peter 1:4). Human promises are often worthless, and many broken promises have left broken hearts. But since the creation of the world, God has never broken a single promise to one of His trusting children. Oh, how sad it is for a poor Christian to stand at the very door of a promise during a dark night of affliction, being afraid to turn the knob and thereby come boldly into the shelter as a child entering his Fathers house! Every promise of God's is built on four pillars. The first two are His justice and holiness, which will never allow Him to deceive us. The third is His grace and goodness, which will not all Him to forget. And the fouth is His truth, which will not all Him to change, which enables Him to accomplish what He has promised. Keep praying! He never promised things would be easy or that He would heal Mackenzie, but He promises us hope and He promises us mercy and grace and he promises that He will see us through.. He will never leave us. Still pleading with Him in that HOPE for a complete healing of our little girl!
Also wanted to thank Diane for posting this in the guestbook. It is such a great example of this miracle that we are all a part of right here, right now.
The Brave Little Soul
by John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?”
God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”
The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity."
Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!"
God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.”
God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and I will bring you home."
Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.
I'll try to post again this evening and let you know what transpires in the meeting. Much love, Amy
Tuesday, March 6, 2007 9:57 AM CST
I don't have much strength to write today. This is my "breakdown day" and thats ok. We are grieving and our pain runs deep. Mack's flow studies showed 44% leukemic cells remain in her bone marrow. Although we are moving forward with another round of chemo because she is clinically doing so well, we are mentally, spiritually and emotionally going through the process of letting go. Don't get me wrong, we still have a portion of hope, and always will because God makes all things possible, but just moving even more toward the acceptance of letting go. I don't really have words to explain how this feels. There so much sadness, but at the same time so much peace and "relief". It is the hardest thing we've ever done and that is a big statement because our family has been through so much over the last twelve years with both Lindsay and Mackenzie. We love that little girl so much and imagining the gapping hole left in our life without her is painful. She has brought so much joy and happiness to our lives and for those gifts we will be eternally grateful. We are not plagued with anger or "why me", we have such great confidence in God's plan and that releases us from those chains. The doctors are meeting and talking today about what type of chemo to try next and we will continue to pray for God's wisdom and guidance to light the path He wants us to take. Praying that He would speak directy to her doctors today and continue to show us His mercy and grace. We have no regrets about any decisions we have made for Mack because we have sought out His Will for her to the best of our human ability. And knowing that we are on the path He wants us to be on, no matter where that path takes us or how it ends, is where our peace comes from. He is good, He is always good, even in the worst of circumstances. And we will continue to call on Him and plead with Him for healing until He tells us definatively that it is time for Him to call Mack home to heaven. She is and always has been in a win-win situation. We are so thankful that these last six weeks Mack has felt so good and been so happy... can you see His mercy in that? I hope so, because I can't think of a more tangible expression of His mercy. His grace IS amazing! Please continue to pray for Mack's organs... her liver, kidneys, heart, lungs, bowels and brain. God HAS held them and we continue to ask Him to protect their perfect function. And of course, continued prayers that this next round of therapy would put Mack in that solid remission that we long for her to be in. Also, please pray for Mack's sisters... for understanding and protection, for peace and acceptance. For God's love to embrace them and hold them. You all have been such a gift to us along this journey and we are so grateful for the way you have loved our little girl and supported our family. I pray so hard that God blesses you richly, for you have extended a gift to us that most will never experience. Thank you. As I write through massive amounts of tears, and pain, just know that we feel held by God. That He IS giving us peace beyond what I've ever known in the past and a calm in our heart that feels amazingly good. He will continue to tenderly care for our family, I am confident of that. I'll try to write again this evening after the doctors have met and we hear their recommendations for the next step. Keep PUSHing and PULLing and praying as God leads you. Much love, Amy
Monday, March 5, 2007 7:50 PM CST
I’m completely exhausted, its been a long hard day. Mack’s bone marrow is not in remission. We don’t have percentage numbers as to how much leukemia is left but the doctor guessed at somewhere between 15 and 65 percent. We will know those things tomorrow. The odds and statistics are not in Mack’s favor and her prognosis is poor. We had some very heavy discussions about what death would look like if we did not pursue any more therapy and it was so awful I won’t even go into those details. Her doctor said, “I still have hope” and we know there is always hope in the Lord. We are going to try another round of chemo probably starting on Wednesday. Please pray for the percentage of leukemia to be more around the 15% and for wisdom for Mack’s doctors in making decisions on how to proceed. I’m numb, but tomorrow I’ll have my breakdown. Pray as God leads, I’m too tired to keep writing. More tomorrow. Love, Amy
Sunday, March 4, 2007 5:11 PM CST
***Monday 3pm Just wanted to let you know we are still waiting for Mack to have the bone marrow aspiration. The schedule is full and they are running behind. Hopefully she will go in within the next 20 minutes. Please continue to pray for encouraging results. We won't know any news until after 5pm. I'll try to update something as soon as we know. Keep praying! Much love, Amy*****
It’s been a rough day today. So much uncertainty and so much at stake. Mackenzie’s CBC continues to show a rising number of blast cells. I woke up this morning with much anxiety and didn’t sleep well last night. I realized that I continue to look to the labs instead of the Lord. I felt as though the Lord was pressing upon me to not even ask about the numbers and just trust Him. Of course, the first thing I did when I got to the hospital this morning was ask about the labs. In a moment, my world came crashing in on me. 40 last cells. The nurse in me said, “this is not good” and the mom in me wanted to just break down. The doctor came in to talk to us and it was a heavy conversation. She then left to go look at the slide herself. As if God was trying to say, “See, just look to me”… the doctor came back and said her slide looked better than they had reported and there are just so few cells (she was only able to count twelve) that any one cell will change the percentages drastically. So much of these results are subjective to the human eye looking at and counting cells and differentiating cells under a microscope. She felt a little better after she saw the cells herself and we held tight to that glimmer of hope. They rescheduled Mack’s bone marrow aspiration for tomorrow afternoon. I won’t have an exact time until morning. I’m not sure if we’ll even get results tomorrow, but we are hoping and praying that Mack’s marrow shows signs of recovery and not relapse. I don’t think they will be able to determine at this time whether Mackenzie is in remission or not, I think they are looking to make sure she has not blatanly relapsed again. The thing we all need to realize is that things don’t have to make sense to us. We are not humanly capable of “figuring out” God’s plans, this is how He designed us. We weren’t meant to know all things, if we did, why would we need faith? Good things happen to bad people, and bad things happen to good people and God uses those things for His glory. We don’t have to ask “why” because we know His plan is perfect and ultimately, that is all that matters. He knew the plans for Mackenzie’s life before she was even conceived. He knows what tomorrow will bring and He knows how to care for our family and we gain strength in that. We don’t have to waste a minute trying to figure any of this out because He knows and He is in control. So once again, we find ourselves on our knees, knocking at heavens door, pleading and calling out for His powerful hand to heal Mackenzie. Asking Him to produce healthy cells for Mack if she can’t do it on her own and asking Him for more life for our little girl here on earth. Our only prayer request tonight is for encouraging news tomorrow, for signs of recovery to be seen and healthy cells to be produced by Mackenzie’s bone marrow. Tomorrow is a big day and our lives could change drastically. We continue to lay Mack at the foot of the cross, kissing her cheek and caressing her forehead before turning and walking away. His care is the best care. There are no other hands I would rather leave my little girl in, than our gracious Father’s hands. He is able and He loves Mack more than we could humanly comprehend. I have hope, because my hope is in HIM.
Steve and my dad are driving down as I write. Mack’s sisters are coping well, but express fears and they are scared. Praying for God’s mercy and grace to rain down on them and give them an abundance of peace and love in my absence. That they would know God’s goodness through this whole journey and that they would draw near to Him. Awaiting God’s mercies tomorrow, that He promises to be new every day and trusting Him to carry us down whatever path He leads us on. I’ll update as soon as we know any news and I’ll post in the evening if we aren’t going to have results tomorrow. We need you guys now more than ever. Please, please join us and rise up as a part of Gods army calling on Him to intercede on Mack’s behalf. We are so grateful for your prayers. He hears each one and He will answer. Hoping and praying His answer aligns with the desires of our heart, but accepting His perfect Will for Mack’s life, whatever that may be. Much love to you all, Amy
Saturday, March 3, 2007 1:36 PM CST
Just a quick update to let you know there really is no change here. Mack's been eating good off of her IV nutrition, drinking good and bouncing off the walls. Her bone marrow is VERY slowly recoverying and still spilling these "immature blast cells". The waiting is long and hard, but we continue to hold her in an open hand before our gracious Father. Still pleading for healing and crying out for healthy cells, but willing to accept whatever His plan for her life reveals. Please join us in calling out for His divine intervention to breathe life into Mack's body. Still in the backseat of the van, not asking any questions about where we are going, what route we'll take to get there or if He knows the way... just trusting Him. His plan is perfect and we are confident in His care for our lives.
Not much on the agenda for the weekend. Our friend Beth is coming this evening to stay with Mack while my mom and I head out to church. So grateful for her willingness to serve our family!
Steve and my dad are driving down on Monday so they will be here for Mack's bone marrow on Tuesday. They are hoping to drive home on Tuesday if all is stable here. Also hoping the girls will be able to come down next weekend with Steve's parents. As you know, plans change daily, so this is all tenative.
Thanks you guys so much for marching on with us. On our knees praying for good results on Tuesday. Keep PUSHing and PULLing! More tomorrow. Much love, Amy
Friday, March 2, 2007 3:09 PM CST
I can't believe its Friday already. The weeks go by so fast and then the weekends seem to stand still. Things remain status quo here, labs the same... slow marrow with creepy blast cells. Mackenzie is receiving her IVIG again today and she is in a benedryl induced nap at the moment. :-) We all cancelled our flights for the weekend... mom and I are staying and Steve and dad will continue to recoup from their colds. Plus the airport in Chicago will be a nightmare tomorrow. Sooooo disappointed I won't be able to spend the weekend with the girls, but maybe its for the best. Sounds like they are all fighting colds too. Praying today for bone marrow recovery so that Tuesdays bone marrow aspiration will give us an accurate view of whats going on in Mack's little body. It truly would take a miracle for her marrow to recover in the next four days, but we know that He makes all things possible and so we are asking for bone marrow recovery and healthy cells to be seen on Tuesday. I know you all are praying because I am reaping (sp??) the rewards of your faithful prayers. To experience peace in the midst of extremely difficult circumstance with so much uncertainty ONLY comes from the power of prayer. It is humanly "unatural". Thank you for your relentless prayers... keep them coming, they truly are carrying us. Also asking continued prayers for protection of Mackenzie's brain, liver, kidneys, heart, lungs and bowels. Yes, I know, I love to pray with specific intentions and our God is a God of details. Please join me in asking Him to hold each organ in His hands and protect their perfect function. Praising Him today for His incredible mercies. Mack's been so happy and feeling so good since we've been here. I've never heard her complain, nor does she seem to feel "cooped up". She actually may think she's at a resort. Massages everyday, soooo many therapists to play with, food brought to her bedside... we couldn't be more grateful for the way this team has loved our daughter and cared for her so tenderly. She has remained stimulated and happy, under these circumstances that gift is priceless!
So, we got Mack's tent set up on her bed last night and she LOVES it! We've been having campouts, making smores and singing campfire songs... Helen, you need to be here... "burn fire burn"! Maybe we're just desperate for anything to help pass the days.... we've totally lost reality! :-) haha! Not much else going on, the sun was shining today and we were grateful. Keep PUSHing and PULLing! Tuesday is a BIG day! Love you all so much! More tomorrow. Amy
Thursday, March 1, 2007 5:36 PM CST
Not much new going on here. Mack's labs remain about the same. Her bone marrow is so slow to recover. She still has blast cells making everyone uncomfortable. I'm just living in the moment and grateful for today. God has been so merciful in protecting my thoughts and He keeps reminding me of "where" my hope lies. Mack has a new friend, Jennifer, who comes every Thursday with her mom to work with Mack on school stuff. Jen is a leukemia survivor herself and both her and her mom have been such a huge blessing to us and great resource for us here in Cincy. We are so grateful for new "family". Today we actually ran some errands while they were here and Mack was just as happy as could be to play with Jen. Her bone marrow aspiration is scheduled for 8:15 Tuesday morning. All of our travel plans are still up in the air. My mom and I are supposed to head home on Saturday until Tuesday while my dad and Steve come here. Steve and my dad are still fighting off colds, and the weather is "iffy". Tomorrow Mackenzie will get her IVIG and her last dose of GCSF (yea!). Please stay on your knees for healing of Mack's marrow, destruction of the leukemia and the production of perfectly healthy cells. Specific prayers for deep remission, even asking God specifically for less than one tenth of a percent to be detected. Please join us in storming the gates of heaven on Mackenzie's behalf. We finally had someone come and look at the internet in the room... hopefully it will be more consistent. I apologize for the lack of updates, its just been hard to get access. Well, we just got a tent for Mack's bed and she is dying to get her tent set up so I better run. Hopefully, I can take some pictures and post soon. Thanks again for keeping up with us and for continuing to pray for our family. Much love, Amy
Wednesday, February 28, 2007 4:23 PM CST
Still in a holding pattern without much new to share. Mackenzie has been feeling great, dancing and playing, but her bone marrow remains sluggish. Still no counts and the blast cells continue to show up trying to haunt us. I realized that I was placing too much hope in a lab value. How foolish of me to try and gain security from a number. My hope does NOT lie there, but rather, my hope is in the Lord and in Him, there is ALWAYS hope! He has gently reminded me of this throughout the day today and I am so glad for His loving guidance. Bone marrow aspiration is still on the schedule for Tuesday. They will be stopping the GCSF (bone stimilant) medication on Friday to help sort things out on Tuesday. Please continue to pray for healthy cells and DEEP REMISSION. I loved what Debbie wrote about praying 110% for less than 1/10% in return! Thats exactly our request! COME ON BONE MARROW! Tonight will be Mack's first night off of IV fluids/nutrition. Also praying for good appetite and fluid intake so she can stay "free free". As always, continued prayers for protection of her organs and protection from infections. Believe it or not, God never gets tired of hearing the same requests. As I stuggle to live "in the moment" I see how I need to gain a more "child like" faith. A friend gave me the example of jumping in the van with your kids. They don't say, "are you sure you know where we are going?, do you know how to get there?, are we going to be ok? are you sure we won't crash?" They just jump in and "go", trusting fully that you will get them where they need to be safely. So, I'm jumpin' in the van with God. No questions asked, just trusting Him to get me where I need to be. And while we go, I'll watch out the window and enjoy the beauty that I see. Keep PUSHing and PULLing and jump in the back seat with me. More tomorrow. Much love, Amy
PS The internet at the hospital has been having some major problems so my access has been limited. Sorry if I have seemed distant. Holding you all very close to my heart!
Tuesday, February 27, 2007 10:59 AM CST
****5pm UPDATE***** Thank you Laura for reminding me of this:
"Yes, we are riding with our hands in the air along with you....you have to realize that it is not to feel the full effect of the ride, but to praise the Lord for the mercy and graces He has shown Mack. We'll take those plunges on the ride trusting and knowing that we will come right back up and eventually the ride will stop. We'll look back at the ride and remember the times we were really scared on the ride and realize that we really had nothing to be scared about..we were safe the whole time." Thanks for ALL you do!!!! Mackenzie has had a good day... lots of playing going on here. Her bone marrow aspiration is scheduled for next Tuesday. Our specific prayer request is that the doctors would see less than one-tenth of a percent of blast cells... that would be "deep remission". Praying He filters those cells through His hands! We've got another week of 'waiting' and another week to stay on our knees. Keep PUSHing and PULLing! Love you all, Amy**************
Well, the blast cells are back. I'm not surprised, but it doesn't make it any easier. This "waiting" time is just so difficult. We're waiting for the doctor to come talk to us. Mackenzie was on the schedule to have a bone marrow aspiration on Thursday, but I think that will be postponed because her marrow is just not recovered enough. It's just such a difficult place to "live" in. The uncertainty consumes you and wants to pull you down. It's like I'm swimming upstream against the current and I'm afraid to stop swimming because the current will pull me under, but yet, I'm too tired to keep going. Trying to keep my thoughts in check and toss my anxiety in the trash because it becomes like a ball and chain. It's worthless. I keep reminding myself that Mackenzie's prognosis has never changed from the day she was diagnosed. He know the plan and He is not confused. Please continue to pray for cleansing and healing of Mack's bone marrow along with wisdom and guidance for the doctors. Mackenzie has been feeling great and actually having fun here. What a blessing! Music therapy came yesterday and Mack was in her glory. She REALLY got into it. Not much on the agenda other than... waiting, waiting and more waiting! COME ON BONE MARROW! Please continue to pray for remission to be declared when she has her next bone marrow aspiration and for specific wisdom and knowledge to be given to her doctors in scheduling the perfect timing so that it would not create more confusion. Thanks so much for keeping up. I know the emotional roller coaster is exhausting and we have no choice to ride, but you guys keep getting on with your own free will, hands in the air and all! Thank you! The internet here at the hospital has been really inconsistent. I've been trying to post pictures for days and I've written several messages and postings that have gotten lost. I'll keep plugging away on this end. Much love to you all, Amy
Monday, February 26, 2007 1:22 PM CST
Hey guys... I am so sorry to leave you hanging over the last couple of days. Honestly, we've been in a holding pattern here without a whole lot of new information to share. Amazingly, God has met us in this land of "limbo" as He always does and has blessed us. On Saturday when we received the news about the blast cells... my spirit was crushed. My mom and I had plans to meet a friend for dinner at the mall, but I was in no mood to carry on a conversation. The emotional drain from the earlier news had taken a toll on me. Nothing felt right. I didn't want to stay in the room at the hospital, but I also didn't want to go to the mall and see life going on in a "care free" manner. I felt like I was suffocating... desperately trying to get somewhere that would provide relief from this heavy burden. There is no earthly place like that. Against everything my body wanted, I decided to go forth with our plans for dinner. What a blessing that was! I actually enjoyed myself and the more I let go of the situation in room 535, the more peace I had. By the end of our dinner, we found our pain replaced with joy and found laughter and happiness in the middle of this sadness and sorrow. Sunday brought the news of "no blast cells" on Mack's morning CBC, but there were also only two cells that could be counted so we weren't overly excited. But at the same time, praising God for a day of rest and celebrating "in the moment". My mom and I ventured out to a church service on Sunday morning where we were met with open arms, willing help and food for our soul. I guess I was parched spiritually because I gulped in everything that was being said. I was renewed. With tears of gratitude, I pray, "Thank you Lord, for meeting me in the valley and holding my hand through the darkness. Your gifts are so good and so easily overlooked when we're on the 'high road'. Your blessings are so rich any earthly gift pales in comparison. We are so grateful for Your love and Your compassion and Your constant care for our family. Father, continue to lead us on this journey. We need your guidance and your strength, for without You, we are lost and scared. But in You, we are strengthen, we are encouraged, and we are secure. We love You so much, Lord. Thank You for your faithfulness. Please continue to meet our every need as we continue to look to You for guidance and plead with You for healing. Father, please, filter every cell that comes out of Mack's marrow through Your hands. Cleanse her body and release it from this illness that has no authority there, because Your Holy Spirit dwells in her. This is Your child Lord and she needs You. She needs Your healing and Your protection over her. For without you, surely she will be defeated, but with You, she can claim victory. Continue to watch over our family and keep your angels on guard all around us. We lay our lives down before You because our trust in You has been so deeply rooted over the last twelve years. Thank You for your goodness. We love you and we praise you today and forever. Amen."
You guys are amazing in helping to keep us on track. We really feel united, like an army doing battle together. What a blessing you all are in our lives. And today, we celebrate again, "in the moment" because we know how things can change, but 15 cells counted this morning and no blasts detected. "Thank You Lord!" Mackenzie still has no white blood cell count, no mono's and no ANC. It will be four weeks on Thursday without counts (5 weeks that she's been inpatient). But, the good news is that she hasn't needed any transfusions in over a week and her platelets and hemoglobin are beginning to rise on their own! "Praise the Lord!" Please continue to pray for healing of her bone marrow, destruction of the leukemia and protection over her brain, heart, lungs, kidneys and liver. Also continue prayers for protection from infections and wisdom for her doctors. Thank you guys so much for bearing with us. We are most grateful for each of you. We finalized all the applications with the financial advisor this morning for the state and federal funding. Phew! Now we wait to see if we are accepted. Please continue to pray for financial protection over our family as well as physical protection. I'll keep you posted. More tomorrow. Much love, Amy
Saturday, February 24, 2007 1:53 PM CST
I honestly don't even know how to begin this entry. I have such mixed emotions as we find ourselves in this "waiting period" again. Mackenzie's bone marrow may be showing signs of recovery, or relapse but it is so early in the recovery process its just difficult to sort out what is what. This morning on her CBC they detected a blast cell, which is an immature cell associated with leukemia. One of the medications Mackenzie is on to "rev up" the bone marrow has been known to make her produce these "immature cells", so this may be just a cause of that. We knew this might happen being on the GCSF, but it is still very alarming and "unnerving", making everyone here feel a little "uneasy". For us, as the parents, its extremely difficult. Here we are again, in one of these dreaded situations where only time will reaveal what is going on with Mack's little body. There is no test or doctors brilliance that can predict what is happpening and the unknown, for me, is always so difficult. My heart is heavy and yet, I know, it may be heavy for no reason. I feel anxious, and yet I desperately try to shed that anxiety knowing that Mackenzie's life rests in the hands of her creator. Our great God who loves her more than I could even imagine. There is nothing that any doctor or nurse or medication could do that would add a day or take a day away from her life. HE knows exactly how many days she will be here. He is not confused by her bone marrow. He is not trying to guess what will happen tomorrow, next week or next month. He knows. Her prognosis has never changed. He knew before she was born how many breaths she would take. And I'm trying my hardest to rest in His perfect plan. I just wish I could shed my humanity because it would make it so much easier to rest in Him.
I keep thinking about Moses in the tent in the dessert calling out to God. God had wanted Moses to lead the people by himself and He cried out and begged God, saying "I cannot do this alone. Lord, please go with me." And the Lord changed His mind and went with Moses. I'm in the tent right now. Pleading and begging for our great God to be here and to bring healing to our precious little girl and to ease our pain. Please pray for healing of Mackenzie's bone marrow. For destruction of every last cancerous cell and for her marrow to produce only perfectly healthy "renewed" cells. Please pray for peace for our family as we wait, trusting in His perfect plan. And we are asking specific prayers for NO BLAST CELLS to be found in Mack's blood. "Lord, you see my pain, you see my heartache, you know every tear I've shed. I don't know why we have been chosen to endure such trials, but I trust You Father. You have been so faithful in meeting our needs and providing for us. You have shown us so much good through our darkest hours. You have been our source of strength, our rock, our refuge. Your power is inconceivable to our human minds. Your knowledge is beyond compare. Your mercy and grace is so good we constantly crave more. Your love is never ending and unconditional. Father, lift my pain and replace it with joy. Lay your healing hands on our little girl and command the leukemia to exit her body. Restore every cell in her broken body. Protect her brain, kidneys, liver, heart and lungs from any negative effect from her treatment. Breathe life into Your precious child. Father we need You. She needs You. Her body cannot do this alone. Lord, like Moses, we plead with you and fall to our knees before you begging for your presence. We place all of our hope in You, for we have seen man fall short, and You claim victory. Just as You have spared Lindsay, Lord, we ask You to do the same for our sweet Mack. Our hearts bleed with desire to experience the gift of life for Mackenzie. Father, is it selfish that I desperately want her to remain a part of our earthly family? I know she is in a win-win situation. But we feel at a loss without her. The mere thought of losing her brings so much pain to my heart and soul. And yet, I know, YOU can heal that pain and YOU can fill the void if she is called to heaven. I know You will care for us tenderly and You will see us through whatever lies ahead. I lay our lives down before You and say 'Your Will above ours'. I know You understand our 'wants' and You know our desires. You tell us You long to give us the desires of our heart and Father I shout to the heavens and ask for healing for Mack. I don't know any other way, but to come before You on bended knee and plead for healing. Destroy the cancer, Father and replace it with the cells You intended her body to have. I have no doubt that You alone have the power and the authority to bring healing to Mackenzie's bone marrow. I feel so fragile, Father. Be merciful and tender. Show us more of Your amazing grace. I know my words fall short, but You know my heart. Examine it today Lord. Wrap Your arms around us and let Your presence be known here today in room 535. Guard my thoughts and send Your angels to stand guard over this room. Give the doctors wisdom and guidance and give us peace that surpasses all understanding. WE NEED YOU!!! I love You so much Lord. Thank You for all that You have done for us. Thank You for all they ways you continue to reveal Yourself to us and for your constant care. Thank You for Your faithfulness which has given us so much security and trust in You. Father, we praise You and worship You and love You. Hear our cries. Amen."
Please pray for our family as God leads you. More tomorrow. Love, Amy
Friday, February 23, 2007 12:03 AM CST
It's a good thing we partied yesterday because the mono's are gone today and Mack's counts remain at "zero". What a long haul! Praising God for Mack's spirits and "health" at the moment. I know the fragility of "no counts" and the reality that things can change rapidly, but for now Mack feels great and we are enjoying this time with her. Please continue to pray for protection from infection and healing of her bone marrow. Not much on the agenda for the weekend. Our meeting with the financial advisor yesterday was again, overwhelming, but productive. We hope to have the application process finalized on Monday and then we wait to see if we are accepted... more prayers that Mack will be approved for federal and state funding. My time away from home is really starting to take a toll on the girls at home. I know God can meet every one of their needs and I continue to pray that He would protect their minds, fill their void, meet their needs and nurture them each, showing His amazing love to them in ways I could never show them. I miss them so much!
Steve made it in today and Mack was lit up when she saw "daddy". We finally got the video phone set up here and I'm anxious to connect with the girls once Steve is back home. What a blessing that will be to help connect us and decrease the distance between us. As always, we are most grateful for your continued love and support. Yesterday we had our first visitors... the story behind it is amazing, but we feel like God is creating a family for us here in Cincy. I'll have to share all those details in another entry. I'll check in again this evening. Much love to you all, Amy
Thursday, February 22, 2007 10:42 AM CST
WE ARE HAVING A "MONO PARTY" TODAY!!!! Yes, it is so very exciting. Mack's counts still remain at "0", but she finally has some monocytes which are the precusors to bone marrow recovery so those counts should be on the way soon! Come on bone marrow AND come on remission!!!!! Mack had the child life puppet in her room this morning to celebrate and she was showing him how to do the "shake your booty" dance! We have so much to be thankful for as the blessings continue to pour down on us. Please continue to pray for healing and recovery of Mackenzie's bone marrow. It still could take about a week for it to recovery and then they will give it rest for a few days before repeating the bone marrow aspiration to see if she is in remission.
The details for the fundraiser/bone marrow drive for Mackenzie are falling into place and everyone has been so helpful. The date has been set for March 24th from 3-7pm at Cotton Creek Elementary School in Island Lake, IL. A local band will be giving a concert and concessions will be sold along with bracelets, suckers, raffles and tshirts to raise money for Mackenzie's medical costs. Two representatives from DKMS America will be there to perform testing for the bone marrow registry which will be checked daily for a match for Mack. Please email my friend Laura at mlje8@netzero.net if you would be willing to help with this event. She is organizing all this and would appreciate any help you may offer. They are also looking for donations for raffle prizes. A SPECIAL THANK YOU TO DKMS AMERICA for hosting this bone marrow drive in honor of Mackenzie. They will be absorbing the $65/person cost of testing and we are most grateful for their generosity. If you are unable to attend the event, but would still like to be tested, please contact DKMS America at 1-866-340-DKMS (3567) or email at info@dkmsamericas.org. A kit will be mailed to you free of charge consisting of four cotton swabs with instructions on how to swab your cheek. No blood needed. Just swab and return, its that simple. If you have eligibility questions regarding pre-existing conditions or age, DKMS America will be able to answer your questions. Please help us make this drive as successful as possible for Mackenzie and all those others looking for a bone marrow match. Kit's will be mailed out starting today so please call!
Mack continues to feel well, its hard to imagine all that lies ahead. I lay down with her everynight and praise God for all that He has done and all that He is going to do for our sweet Mack. What a gift she has been to us all! We continue to lay her at the foot of the cross and trust in His constant care. I've got some picture from our Mono party today that I will try to post later after our meeting with the financial advisor again at 1pm. Thank you all so much for your relentless efforts to help ease our burdens. You guys are such a blessing to us! Our army is becoming stronger and stronger! More later. Much love, Amy
Wednesday, February 21, 2007 5:04 PM CST
Can you believe we've been in the hospital 4 weeks today?!? God has been so merciful, I'm amazed that we have four weeks behind us. Mackenzie continues to feel well, but we are still waiting on her bone marrow which is taking its sweet time to recover. No counts yet. Tomorrow we anticipate she will need platelets, but we are VERY thankful that she's been going six days between transfusions. They expected her to need platelets every two to three days. The less tranfusions the better! Tomorrow we will meet with the financial advisor again, I've still got paperwork to fill out and my head is spinning. Please continue to pray for God's provision in the financial ring and for approvals to fall into place with state and federal funding. You may have noticed above, I posted some information regarding a bone marrow drive for Mackenzie. This will be in conjuction with a fundraiser held during the drive. I'll post those details as soon as I have them. If you wish to be tested for bone marrow and cannot attend the event, please contact DKMS America for a kit to be mailed to you. I was told all fees should be waived, but they would accept any donations to help cover the costs of testing. Steve is heading down again on Friday and I'm hoping to get home the following weekend. Not much else happening here. The four walls are closing in a little bit, but we have so much to be thankful for, I cannot complain! Come on bone marrow! We will have a "white blood cell" party at the first sign of recovery! Keep PUSHing and PULLing, we continue to gain great comfort from your prayers! Much love, Amy
Tuesday, February 20, 2007 2:22 PM CST
Hey guys... I have to apologize for the missed update yesterday. I was tied up with the financial advisor at the hospital and then filling out endless paperwork... I worked on this paperwork for over six hours and I'm still not done. The process left me with a massive headache that I'm still trying to shake today. We meet again on Thursday afternoon so hopefully I will plow through the rest. Mackenzie and I will be claiming duel residency here in Ohio and applying for state and federal funding. It is very clear that we will cap out Mack's two million dollar insurance policy. The financial advisors and coordinators here have been incredibly helpful and so knowledgeable. Praise the Lord for this blessing! I am so tired today, I actually just woke up from a three hour nap which is NOT like me at all. I think the mental drain of it all has taken a toll since I'm physically feeling well. Or maybe its just the dreary weather outside.. its cloudy and rainy here, but feels pretty warm (high 40's, low 50's).
Mackenzie has been doing well, but counts still remain at "zero". It will be three weeks on Friday with no counts. Come on bone marrow!!!!! All of our prayer requests remain the same with specifics for protection from infection, wisdom for docs on choosing transplant donor, bone marrow recovery and healing of her leukemia. We have so much to be thankful for and although I will also ask you to pray for financial protection for our family, I also ask you to thank God for all the ways He has and continues to provide.
Not much on the agenda here other than continuing with all of Mack's meds and waiting for bone marrow recovery so that she may have a bone marrow aspiration to see if she is back in remission. We know His timing is perfect and when we feel "ancy" we lean harder on Him trusting in His plan. Thanks again for loving us and continuing to walk by our side on this difficult journey. We praise God daily for the role you all play in our lives. More
tomorrow. Much love, Amy
Sunday, February 18, 2007 2:09 PM CST
Well, the germs spread amongst the girls and three out of four were coughing and blowing their noses by this morning. Steve and my dad decided to head home today instead of tomorrow because it was just too difficult having the girls here when they were sick. Not only could they not be around Mackie, but they couldn't be in the hospital at all or at the Ronald McDonald house. Plus, it was hard for me to be around them too because if I get sick, then my mom will have to carry the entire load and it really is a two person job... minimum! Steve and I did take the girls to the mall, and Taylor was able to spend most of her time with Mackenzie. All she wanted was to be with her sisters! It was hard saying goodbye again today. It's like a constant tug of war going on. When I'm with the girls, I can't wait to get back to the hospital to be with Mack and when I'm with Mack, I can't wait to get home to see the girls.
Mackenzie continues to feel pretty good, but still no counts! Come on bone marrow! We are hoping sometime this week we will see the signs of bone marrow recovery. Please continue to pray for protection as any virus or flu or infection will delay count recovery significantly and could become life threatening. Also continued prayers for healing of her bone marrow and destruction of ALL leukemia cells in her body! Still praying for wisdom and guidance for her team of doctors throughout her care... especially in picking the right donor and caring for her during transplant.
Not much on the agenda for today now that its just my mom, me and Mack. Pretty quiet around here, but quiet is a good thing. Can't believe we've been here for a month. Please continue to pray for mercy and grace and God's perfect timing to dictate Mack's entire course of treatment. We continue to place all of our hope in Him. You guys continue to ease our burdens in so many ways we don't even know how to say thank you. The mail has been wonderful! It is fun and exciting, its a diversion, its a link to the outside and it brings us all great joy. Thank you for serving us through the mail! The messages online are such an encouragement to us. Really, truly a source of strength and a help in getting us to "refocus" when our thoughts are spiraling downhill. The financial support is wonderful. I am feeling a little overwhelmed as the bills have begun rolling in. $74,000.00 for one week here. Our insurance paid out $70,000.00. We will talk with the billing people and our financial advisor here this week because at that rate, our insurance cap will be eaten up in months. I'll keep you posted, but we can add the financial costs to our list of prayer requests. The packages for Mackenzie are the highlight of her day. Her window looks out over to the post office. So every morning she watches me walk over and sees what's coming before I even get up to the room. I can hear her excitement before I even open the door to her room. The gift cards have been a HUGE help with gas money and food and extra costs of living in two states. You guys are so good to us. I don't know what we would do without all of you! Thank you so much for loving us and for marching on without complaining.... willingly being inconvienced and willingly sacraficing for our family. The lump in my throat is growing bigger and bigger as I write. We are just so grateful for EVERYTHING you do! And we love you all dearly! We are so blessed and I praise God for bringing each of you into our lives! He IS so good! Its a long road ahead, but I'm confident in His care. No matter the outcome, He will go through it with us and provide for our needs.
Mack's getting annoyed that I'm still on the computer, so I guess its time to go play "house". Keep praying, your prayers are sooooo important to us. They empower us and give us strength, the uplift us and encourage us and they ARE IMPACTING THE COURSE OF MACK'S MEDICAL JOURNEY!!!! More tomorrow. Much love to you all, Amy
Friday, February 16, 2007 11:25 AM CST
Wow, the waiting for counts after a hit with the "big guns" seems eternal! It's like watching a pot of water trying to boil. Every morning I wake up excited wondering if there is any sign at all of Mack's bone marrow recovering. Every morning that excitement seems to be followed by the feeling of disappointment seeing counts remaining at "zero". Looking for the blessing though, and seeing how Mack has been protected during this difficult round of treatment. Yesterday was the "changing of the guards" as the attending doctors did their switch. The new doctor covering said it could be another two or three weeks. COME ON BONE MARROW!
Mack continues to feel well. She is getting blood and platelets today and will receive IVIG tomorrow. Steve and the girls are on their way down for the weekend and I can't wait to see them. Unfortunatley, Lexie and Kali seem to have horrific colds and will not be able to see Mackenzie. Please pray for protection for the rest of us because if we get sick, we can't be in Mack's room.
You probably noticed above that a registry has been opened at Target to help with ideas of gifts for Mack. This was a great idea as we can add and subtract any items from the entire Target store right from Mack's hospital room. Just so you know the registry orginated in San Antonio, TX where my friend set it up for us, so you may see a TX address when checking out, but the items should be shipped to the Cincinnati PO Box. Thank you guys so much for continuing to help out in so many different ways! We feel like we have been showered abundantly with blessings over the past month! Well, thats about all thats happening here for now. Keep praying for healing of Mack's bone marrow and specifically production of white blood cells! Also, protection of all her organs and protection from any new infections!!!! Keep PUSHing and PULLing! Much love, Amy
Thursday, February 15, 2007 11:04 AM CST
Here we are... noon again before I'm getting to this update. Mack had a good night and I slept great at the Ronald McDonald House. My mom stayed with Mackenzie and Steve finally made it home late last night. I am loving every minute of "status quo" while I continue to stay on my knees for healing of Macks bone marrow. All counts remain at zero today. COME ON BONE MARROW!!!!! Looks like Mack will need blood and platelets tomorrow again. She's eating a little here and there, but her appetite still needs improvement. I know God's timing is perfect and so we are resting in Him and awaiting the perfect moment for her bone marrow to begin producing healthy cells again. We are praying that her bone marrow will be in a deep remission and we can proceed right to transplant from here without being discharged. They told us that usually they need to discharge the patients to the Ronald McDonald house for a week or so until a room opens up on the bone marrow transplant floor. I know they are full right now... it is a 24 bed unit. He IS the God of details and His timing IS perfect and so we are asking Him to coordinate all of that. I emailed our search coordinator a few days ago, but have not heard any news on the "search front". In the meantime, we continue to count our blessings every day, so grateful for God's amazing grace, and His unconditional love! I find myself praying daily, "Lord, bring us through this fire without even the scent of smoke on us!" Please continue to pray for God to reveal the perfect donor for Mack's little body and for His protection to continue to engulf her, keeping her safe and healthy. More later today. Much love, Amy
Wednesday, February 14, 2007 11:48 AM CST
Happy Valentines Day! Well, Cincinnati was hit with an ice storm that has left 60,000 people here without electricity. Fortunately, it has not affected the hospital or Ronald McDonald House. Steve is still stranded here and hoping to fly out tonight. Miraculously, my mom made it in last night... a twelve hour travel affair with a detour to Detroit. She said the flight was rough and she found herself in prayer most of the flight. Mackenzie has been feeling well, but still waiting for her bone marrow to start producing cells again. Counts are still at "zero". The waiting is long, but God has been abundantly good. He truly tends to each detail of our lives and provides. Thank you Heidi for reminding me of that in your email today. It hit home for me when you wrote...."I was happy to hear that Mackie danced today. Just imagining it made me smile. It made me sad to hear about her baldie head, and how upset that makes you every time.....but remember, God knows the number of hairs you shaved and he knows the number of hairs that need to grow back. He's the God of intimate details, and He will take care of all that."
Not much on the agenda today. Please continue to pray for protection during this most vulnerable time of "no counts" and for protection of all Mack's organs. Also, bone marrow recovery and healthy cells! I'm hoping to post a new picture later today after I upload some photos. Thank you guys so much for everything. I'm at a loss for words in thanking you for everything you do for us! I wish we weren't so needy, but I'm so glad that you guys are always willing to help meet our needs! More later. Much love, Amy
Tuesday, February 13, 2007 9:47 AM CST
****2pm UPDATE**** You guys are amazing.... thank you for your incredible and constant help! God is so good! Driveway is being taken care of! And I am enjoying another day with Steve! There are blessings in every storm... literally! :-)*********
******NEED HELP! WONDERING IF ANYONE BACK HOME WOULD BE ABLE TO SNOW BLOW OR PLOW OUR DRIVEWAY TODAY. STEVE IS STUCK HERE IN CINCY AS HIS FLIGHT WAS CANCELLED AND MY DAD WILL HAVE TO STAY WITH THE GIRLS TONIGHT. I GUESS THERE IS NEARLY A FOOT OF SNOW ON THE DRIVEWAY AND OUR SNOW BLOWER BROKE. WE REALLY DONT WANT MY DAD TO SHOVEL. (NOT IMPLYING HE'S OLD OR ANYTHING) IF YOU CAN HELP PLEASE EMAIL US AT HOPEFORMACKENZIE@YAHOO.COM OR JUST HEAD OVER TO OUR HOUSE. THANKS FOR LETTING US COME TO YOU WITH ALL OF OUR NEEDS!!!! MUCH LOVE, AMY****************
Mackenzie had a good night. Got great sleep and was excited to get up today and be "free free" again. She danced around the room after she was disconnected from her IV nutrition and I even saw the little "shake your booty" dance!!!! Huge blessings continue to rain down on us even in the midst of extremely difficult circumstances. There are times when I am completely swallowed up and overwhelmed by all that lies ahead and I wonder how on earth we will be able to perservere, but then I wondered those same things before beginning this round of therapy and here we are on day 20. If I keep bringing my thoughts back to today, it seems managable, but the uncertainty of the future and the medical knowledge I possess which likes to haunt me with all the "what ifs" are constantly creeping in on me. I am so grateful for all your prayers, because I realize, humanly, I can't do what I'm doing. God is here and He is answering your prayers. He is providing and He has been amazingly merciful! He is giving us the strength to get through each day and He continues to be faithful in meeting each need in that precise moment. Being the "planner" that I am... I have to admit I struggle with that sometimes. I like to know what's coming around the corner. I say, "Okay God, what are you going to do? Or, How are you going to provide for that?" I need to stop playing out all the different senarios in my head and just REST knowing that He will continue to show up! He will continue to provide and He will continue to carry us! We've been through many fires over the past twelve years between Lindsay and Mackenzie medical crisis' and God has been faithful every moment of those twelve years! You would think it would get easier for me to just let go, but in some ways, it actually gets harder because I am so tired and weak. It is in my weakness that I find myself trying to "figure it all out" instead of just resting in HIM! Satan likes to plant ideas and spread his lies which are enticing when you are weak. The spiritual battle that surrounds us is almost more exhausting that the physical battle we fight each day. But the longer I find myself on the battlefield, the tighter I find myself clinging to the promises of our great God. I always invision myself clutching the foot of the cross, with my eyes closed tight, hanging on for dear life and just letting the world fall apart all around me. My trust in Him has grown so much as He continues to reveal more and more of Himself through the valleys and proven Himself to be faithful time and time again. Thank you for hanging on with me!
Not much on the agenda for the day. Please continue to pray for wisdom and guidance for the transplant doctors in picking the perfect donor match for Mackenzie and all the "preconditioning" treatment prior to the transplant. Also, continued prayers for protection from all infection, protection of all Mack's organs and healing of her bone marrow. Also, increased appetite. All her counts remain at "zero". Come on bone marrow!!!!!
Steve was supposed to fly home today, but his flight was cancelled due to nasty weather. Cincinnati is a little different than Chicago. If they get three inches of snow here, the entire city shuts down. They have had quite a bit of snow over the past month that we have been here. I think the schools have been closed more than they have been open. Hopefully, Steve will get out in the morning. My mom is supposed to fly in and as of right now, her flight is still arriving as scheduled. Please pray for safe travel. Not much else for now... I'll check in later this afternoon. Much love to you all, Amy
Monday, February 12, 2007 9:20 AM CST
*****3:30pm UPDATE*********** Mack's had a pretty good day today. She's loved every minute of being disconnected! She was out and about this morning walking the halls and enjoying her "freedom" if you can call it freedom. Her IV nutrition will run from 8p to 8am and then hopefully she'll be disconnected the rest of the day with the exception of her IV antibiotics. Prayers needed for increased appetite and fluid intake AND production of white blood cells! Come on bone marrow!!!!! I'm hoping to have some new pictures to post tomorrow.... Mack looks so different without her hair! Keep praying you guys... your prayers are pulling us through! Much love, Amy***********
I LOVE Mondays!!!! Yes, a very stange thing for most people, but if you've ever found yourself in the hospital for an extended amount of time, you too, will share my relief when Monday morning rolls around. Nights and weekends are tough... you hold your breath and pray the "skeleton crew" can pull you through 'till Monday. For us... our troubles have notoriously hit during the nights and weekends. Our girls seem to behave M-F 9-5. So Saturday night around 8pm Mack's PICC line stopped working. Wouldn't flush, wouldn't draw, had to "undress" it again for the third time this week which is totally traumatizing for Mack. Finally after fighting with the weekend crew that never likes to make decisions or change anything... the line was pulled. GLAD that is out! And praising God for an "uneventful" pulled line!!!!! Mackenzie had a pretty good weekend. She started eating a little yesterday and we are praying that her appetite will continue to improve and her taste buds will allow her to enjoy that food! Changing her IV nutrition to infuse only during the night hours and she may actually be "free free" during the daytime with the exception of her IV antibiotic infusion. I'm going to deaccess her port this morning and give her a shower and clean her up. The haicut on Saturday was tough and she is MUCH more aware of her appearance. She said, "evwebody donna think I wook ugwy." My heart broke. She wants to wear a hat everytime she leaves the room, "so no one see my bald head". I went to the mall yesterday and got her a few new outfits and the "hair fairy" came last night too. Plus... this morning the post office was full of mail for Mack. All of that helped boost her spirits and forget about being bald. She loves mail... just the simpliest things make her light up!!!!! We are on day 19 of this round of chemo... 20 days in the hospital. She still has a "0" white blood cell count and a "0" ANC. She had a platelet transfusion yesterday and should hold for a few days without needing blood or platelets. Please continue to pray for healing of Macks bone marrow and for the production of healthy cells.... come on white blood cells!!!!!! She's been asking to "go home" alot these days and really missing her sisters. We've been in Cincy for almost a month now and it is tough to be away from home. Especially know how long the road ahead will be! Gotta run and give Mack a shower. I'll try to check in one more time today, but really, really wanted to thank you all for continuing to pray and continuing to support us through these tough days. We really need you guys! Counting our blessings today.... they are abundant! Much love to you all, Amy
Saturday, February 10, 2007 10:07 AM CST
Mack had a pretty good night despite all the trips to the bathroom, but the good news about all those trips... NO POOP! I know I always share the details here and I've stretched many of your prayer lives asking you to pray for all those "details", but we are grateful for your willingness to pray for things that may be out of your comfort zone! Mackenzie's diarrhea seems to be subsiding! Amazing!!!! And we are thanking God today for the blessing of a normal bowel movement. For those of you who have followed Mackenzie's story from the beginning... you KNOW how HUGE this is for us!!!! The chemo has definately done something to her taste and she is still not eating. Not because of lack of appetite... she asks for food and wants to have food by her, but she just won't eat it because it tastes yucky. Please pray for healing of her taste buds so that she may enjoy food again and come off the IV nutrition. Her counts remain at zero today... I think it's been a little over a week now since they have been at zero. No blood or platelet transfusion needed today though, I think that was a surprise to everyone. Steve made it in this morning and it was great to see him. I'm particularly happy that he is here because just this morning Mack's hair started fall out like crazy. Today is the day we must give her that "buzz" cut. This is always so hard for me and usually emotional. Not because of the "vain" component of her being bald, but because of the "in your face" reminder of what that bald head represents.... an aggressive, nasty, horrific disease that is trying to steal the life of my baby girl. Please pray for an extra measure of strength and comfort as I feel fragile today. Missing the girls and missing home comes to me in strong waves, and this morning was one of those times. Also, continued prayers for healing of Mack's bone marrow, production of healthy cells and protection from all infections. Not much else on the agenda for now. Not sure if I'll make it back to the computer today, but remember, no news from us is always good news. Thanks again for your relentless support. We love you all! Amy
Friday, February 9, 2007 12:29 AM CST
*****6:30 pm update****** Not much new to share... that's always a good thing. Mack was quite crabby again today and seemed a little uncomfortable. We gave her some tylenol as she was complaining of a headache and backache. It seemed to help. Steve is flying in tomorrow morning and my mom is heading home. My mom is taking the computer with her for the weekend, so my access will be limited to the library. No news from us is always good news. Please continue to pray for bone marrow recovery, protection from infections and healing of her leukemia. More tomorrow. Much love, Amy*******************
I can't believe its afternoon already. I slept at the RMH yesterday and didn't wake up until after 8 this morning. After getting showered (for the first time in days) I walked over to the post office. As I picked up the mail, I was stuck with emotion... overwhelmed by the generosity of sooooooo many who take the time to write or send a little something. I cannot tell you what that means to us. How much joy it brings to our hearts and the constant reminder that we have not been forgotten. The greatest gift in your correspondence is not necessarily the joy and happiness it brings to Mack (although that is a HUGE portion), but the connectedness we feel to all of you and the feeling of NOT being alone in this deep dark valley is amazing. To have people rally around you, as you all have done for our family is a rare gift... a gift beyond measure. My heart swells and the tears stream down my face. Our blessings are abundant and I praise God for His goodness. I wonder why we have been so blessed... I feel so undeserving, but yet sooooo grateful and so thankful for all He does and all you do! I wish there were words to describe how it feels to have thousands praying for you and hundreds supporting you in physical, tangible ways. I don't know why I was chosen for this journey, but I do know that it is unique and special to have all of you standing shoulder to shoulder with us and for that my heart shouts "Thank you"!
Mackenzie had a good night... lots of trips to the potty, but NO FEVERS!!!!! She seems tired today, but then again so are we... and we have normal blood counts and no infections. All of Mack's counts remain at "zero". We are expecting a platelet transfusion tomorrow and blood again in the next couple days. Come on bone marrow... lets see some white blood cells! Praying for healing of her bone marrow and the production of healthy cells! Not much new going on here today, just continuing to support Mack through this recovery phase. Since starting the flagyl yesterday, Mack's diarrhea has improved. Although both cultures have come back negative for c-diff, we're going to keep her on it for now! Keep praying for proteciton and healing of her bowels and increased appetite. I think the chemo has done something to her taste buds because she is repulsed by everything she tries spitting it out saying, "dat taste bad". Even fried rice!!!! Gotta run, Mack's ready to play "house". More later. Sending you all much, much gratitude and ALL of our love. Thank you for continuing on with us! Amy
Thursday, February 8, 2007 9:00 AM CST
*****6:30pm UPDATE***** Mack's had a pretty good day today despite the nausea and diarrhea that persists. She worked with her speech therapist and her occupational therapist quite well. Her OT used pudding on a tray for Mack to draw letters in and Mackenzie thought that was top notch! Her IV nutrition will begin tonight and we're hoping that will help Mack feel better too. The fevers are spacing out and not spiking like they were before...Praise God for that answered prayer! She has been receiving cards and packages in the mail and it is the highlight of her day. She has had a flurry of dollar bills come in for her adventures to the vending machine and thinks she's pretty important now that she has more money in her purse than I do! Today she received a card from my grandma that didn't have anything in it but a note... she starred at the card, turning it over and looking in the envelope. With a confused look on her face she said, "Dats weird, no money?!?!" My mom and I were cracking up! I guess you guys have spoiled her rotten! Thanks again for your continued prayers. Still asking God for more mercy and grace for Mack and that He would place a hedge of protection around her. Also for wisdom and guidance for her doctors and for resolution of her fevers and clearing of her infection. None of her blood cultures have grown anything since the initial one on Monday night... another Praise God!!!!! Also, prayers for healing of her bone marrow and production of health cells. Sending our love to you all! Amy********
Well, you all must have been praying for a good night sleep for us because I slept like a rock. Our new room is "lead lined" because they use it for patients with radioactive implants. It's like its sound proof.... you don't hear a thing in here! I also found it interesting as many of you wrote something about seeing the sunshine or windows in the room... this room has two HUGE windows as its a corner room. Isn't it amazing how God tends to the smallest details. Mack had a good night. She's making it seven hours between tylenol and not really spiking temps like she was. Her little body still wants to fever, but its improving... keep praying for resolution and healing of every detailed and intricate part of her body that wants to fever. The diarrhea persists, but the doctors have agreed to start Flagyl whether she has c-diff or not. They will treat her through her antibiotic course and hopefully prevent her gut from stripping. They have also decided to begin some IV nutrition today. They'll start with either half or three quarters her nutrional needs with the hopes of not wiping out her desire to eat, but at the same time supporting her through this without getting too weak. I'm so grateful for the proactive philosophy here. The doctors are so good to us! Mack seems more nauseated, although she's not throwing up, she's gagging alot. It reminds me of when she was first diagnosed and we couldn't figure out why she gagged all the time and nothing seemed to help it. Please pray for mercy and grace and for God to take away the nausea and help Mackenzie to come through the fire without even the scent of smoke on her. Thanks again for your amazing support. Please know that I read every message and love hearing from you all. I am always uplifted and encouraged after reading the guestbook...and sometimes I'm even cracking up. I wish I could respond to each and everyone of you personally. I love you all dearly! More later. Love, Aim
Wednesday, February 7, 2007 9:24 AM CST
*****10:30pm UPDATE****** Getting ready to head to bed. Mackenzie seemed to be feeling a little better today, but still continues to have fevers. After tylenol, she was up and playing, but when the fever creeps up, she shuts down. We were moved to a bigger room today, as they put Mackenzie in isolation since the diarrhea has begun. Sent a sample for c-diff today, will hear results on that tomorrow. Please pray for protection of her bowels. Remember when she was diagnosed three years ago... how we prayed and prayed for healing of her bowels. She also stopped eating yesterday and will most likely start on IV nutrition in the near future. Pray for nausea/vomiting to resolve and appetite to resume. Last prayer request is specifically for protection of her lungs. It brings us great comfort knowing that you all are covering us in prayer... don't know what we would do without you! More tomorrow. Much love to you all, Amy*********
Good morning. Sorry I never made it back to the computer last night, I am so exhausted working on four or five nights with just a couple hours of sleep. Mackenzie had the staff on her toes yesterday as things were teetering on "touch and go". Praise God for a quiet, stable night!!!! Although she continues to spike temps, her vital signs remain stable and if she stays true to her course... she will continue to spike temps until her blood counts begin to recover. Until then, they will continue to support her with platelet and blood transfusions, antibiotics and possibly more antifungals. Yesterdays platelet infusion went well and despite a STATE WIDE PLATELET CRISIS we have found 10 DONORS WITH "A NEGATIVE" BLOOD in the Cincinnati area ready and willing to donate for Mack! Praise God for this amazing answer to prayer and a special thank you to Martha for helping to find, coordinate and schedule the donors!!!!!! Amazing! The doctors were blown away when I told them we found 8 donors, they'll really be shocked when I give them the update that we now have ten!!! Mack woke up this morning happy and somewhat playful. It was good to see a little "spunk" back. She tuckered out quickly and fell asleep. Please continue to pray for resolution of the fevers. No blood cultures have grown anything since the initial culture was drawn and they will continue to draw daily blood cultures until her fevers resolve. Also prayers for healing of her bone marrow and production of good healthy cells. And protection from infections and protection of all her organs from the toxic effects of all these drugs. Mackenzie is getting a blood transfusion today and will most likely need platelets the day after tomorrow. Can't believe we've been in Cincy for three weeks...two of them here, in the hospital. Somehow, God is giving us the strength to get through one day at a time. Please continue to pray for our sweet Mack. Your prayers are truly impacting her medical course! More later. Much love, Amy
Tuesday, February 6, 2007 9:05 AM CST
What a LONG night. Since Mack spiked her fever around 9pm last night it has been a constant flurry of activity. I was going to head back to the Ronald McDonald house, but things were so "dicey" here, I never made it back. Working on about three hours of sleep. Mack continues to have fevers, but we found the source, which is a good thing. She has a blood infection, most likely from her PICC line. Ironically, the oncology floor hasn't had a line infection in over seven months. Leave it to our family to break that! Mackenzie is tired, and the infection has zapped the spunk out of her. Please pray specifically for this germ to be cleared up. Lots of praises and blessing to focus on. First, within an hour of her spiking a temp, two antibiotics were started and they are the right antibiotics to treat this infection, second, she waited until I got back to spike her temp and I was able to enjoy my weekend at home with the girls. Third, she smiled this morning... even through her 103 temp and body aches, she smiled. Please continue to plead for mercy and grace from our Heavenly Father. Specific prayers for this infection to clear quickly and for Mack's bone marrow to heal and begin producing white blood cells to fight this infection. Your prayers are impacting the course of Mackenzie's medical journey. Keep praying! More later today. Much love, Amy
Monday, February 5, 2007 6:50 PM CST
*******9pm UpDATE******** Of course as soon as I posted this update... Mack spikes a temp. I guess the ride has begun. Please pray for our sweet Mack - for resolution of this fever and protection and recovery of her blood counts. I'm not ready for this....
We made it back to Cincy! Mack had a great weekend with Daddy and Papa. She had them playing "house" and "babies" all weekend, along with many trips to the vending machines. Yesterday she had the dressing changed on her PICC line (which she hates), so Papa let her put tape on his arms and rip it off. Needless to say, his arms are "hairless" now, and Mackenzie loved every minute of it! She's still feeling well and busy, busy, busy! Her counts have been at "zero" now for a few days and we expect them to be there for another week or two. Praying so hard for protection as she is so susceptible and vulnerable to any germs.
I had a great weekend with the girls at home, it just went way too fast! (Not to mention the Bears loss!) The girls seem to be adjusting quite well, even though they miss me terribly. Please continue to pray for God to protect them and wrap His arms around them so that they feel an extra measure of love during these days apart.
We have been so blessed these days with great travel conditions, Mackenzie's good spirits, and all the amazing support you all continue to provide for us. I'm amazed at the different ways He uses each of you to meet certain needs of ours. It seems He's used some of you to encourage us with your words, and others of you to make us laugh and bring us joy, and others to help carry the financial burdens and others to help things run smoothly back at home. He knew exactly what we needed to get through this and has clearly brought each of you into our lives for a very specific purpose. He is so good!
We ARE receiving all your cards, and gifts and letters in the mail. I have recruited some help in getting thank you/acknowledgements out in the mail. Hopefully, they will be sent sometime this week. I just want you all to know that my heart is pouring out thanksgiving for ALL the things you have done and continue to do for my family. I wish I could respond to every single message that is posted and every card and gift we receive, but it's just not physically possible. We truly appreciate each and every one of you and are so glad to have you with us on this battlefield.
Please continue to pray for NO FEVERS, protection of all her organs, wisdom for all the doctors involved in Mack's care and specifically that God would make it vividly clear which donor to use for transplant. Gotta run and grab some dinner and get settled in... just wanted you to know that all is well, and it was a good weekend for everyone. More tomorrow. Much love, Amy
Sunday, February 4, 2007 3:54 AM CST
Well, I've been tossing and turning all night and finally decided I would just get up and return some emails and messages. My mom and I made it home yesterday afternoon and the girls were all watching out the window for me to come. It was quite the "welcome home"! Soooooo good to see them and hug them! But at the same time... very difficult to "re-enter" the world. It seems so strange to be home without Mack. And to know she's fighting for her life in another state, makes it even stranger to try and "engage" life. We went to church last night and watching people laughing and joking around just felt so strange. It's like two worlds colliding and I'm trying to be a part of both of them. I realized that God is the ONLY bridge to those two worlds. How grateful I am for His relationship that erases the miles between my family and bonds us together. How thankful I am for His grace that allows me to enjoy my children, in the middle of suffering and difficult circumstances. It may not be easy, but I see it is possible because of Him. I spoke with Steve before bed last night and sounds like Mackenzie had another good day. Her infusion of IVIG went well and she was still feeling good. We are having a family birthday party for Lexie this afternoon, and she can't wait. I'm so glad the timing of this trip happened to be around her birthday so I could be a part of it. It seems as though the girls are having a hard time with me going back to Cincy. Every ten minutes, someone will say, "I don't want you to leave on Monday". This is extremely tough on them, but I have confidence that God can tend to ALL of their needs while I can not. Please continue to pray that He would fill the void, and they would feel His love and security during this time when our family is split. Planning on heading back to Cincy on Monday morning. Continued prayers for stablility for Mack, protection from all infections... we got a hint of the docs surprise yesterday that she was doing so well. They were "pleasantly surprised". Praying that she will "shock the doc" with NO FEVERS and that He would protect all of her organs from the harsh effects of chemo. Keep praying for God to choose the perfect donor or cord blood for Mack's transplant and show us clearly what is best for her. I think we have found one A negative donor in the Cincinnati area willing to donate platelets for Mack... Yea God! Keep putting the word out, we may need a few more. Thanks for your relentless support of our family and your many prayers for Mackie. I'll try to write again before bed, but seeing that I was up all night tonight, I may just pass out. If you don't hear from me tonight, I write again before we leave in the morning. Much love, Amy
Friday, February 2, 2007 11:18 AM CST
****9pm UPDATE***** Sorry this will be a quick update, I'm trying to catch the shuttle back to the Ronald McDonald house. Just wanted you to know Mackenzie had a great day.... We had the music cranked in her room and she was dancing, jumping on the bed, and doing somersaults on the bed! Of course, she made a few trips to "Vendo-land" and "hit the jackpot" again! Platelet infusion went well today...praise the Lord! She will get IVIG again tomorrow... they are talking about giving it to her every two weeks now instead of every four. The immunologist feels her immune system and leukemia are all related to eachother. The transplant should fix her immune problem. Please continue to pray for protection for and healing for Mack and wisdom for her doctors. I am heading home in the morning... cannot wait to see my girlies. Steve and my dad are flying in tomorrow morning and then my mom and I will drive home and return on Monday. We are going to celebrate Lexie's birthday (a little early) so I can be there. Please pray for a good time with the girls... I know leaving them again will be very hard. Also, prayers for stability for Mack while I am away. I'll update again tomorrow before we leave. Much love, Amy*********
Praising God for another quiet night. We all slept well and Mackenzie continues to feel good. Her counts are almost rock bottom... her white blood cell count was 0.3 and her ANC was 30 this morning. Her platelets also took a nose dive and therefore she will need platelets today. There is a shortage of type "A Negative" platelets and we are searching for anyone in the Cincinnati area who has blood type "A Negative" and would be willing to donate platelets for Mackenzie. She will be needing them a lot over the next several weeks. Please let us know if you or any family, or friends could help in this way.
Please continue to pray for protection from all infections and healing of Mackenzie's bone marrow. And thanks for letting me come to you with ALL of our needs, I know they are many. More later today. Love, Amy
Thursday, February 1, 2007 1:52 PM CST
Still hanging onto the moments of "today" as Mack continues to feel good. Her counts are still on the decline and all we can do is sit and wait for them to bottom out and then recover. The rash on her legs seems to be a little better or the same, but no worse. Still praying for no fevers which usually ALWAYS accompanies low blood counts. Mackenzie enjoyed another massage today from her massage therapist. It just cracks me up. She lays there with a big smile, thoroughly enjoying herself. Child life is working with her on learning how to swallow pills and a school teacher works with her daily, along with all the other various therapists. She is making many friends and keeping very busy. Thanking God for the blessings of a happy girl who never complains and LOVES interacting with all the staff here. I think she's already found a way into their hearts... of course, having a good friend named Ace doesn't hurt. hahahaha! It's no secret who her boyfriend is. If you happen to miss the Ace quilt or Ace pillow case or various pictures of him around the room, don't worry, she's quick to tell everyone that comes into her room.... exact quote, "I have four sisters. Dot a tat named chawee (got a cat named Charlie) and a boyfwend."
Her platelets, although low, were not low enough to require a transfusion today. Hoping maybe we can get by another day or two before she needs platelets. Please continue to pray for protection from all infections, no fevers, healthy bone marrow and cells and for God to choose the perfect match for her transplant and make it abundantly clear to her doctors. I'll keep you posted on the bone marrow drive as I have details. Thanks again for carrying a portion of our burdens and lightening our load. I have to tell you, when we first learned the news of Mack's relapse, I was leaning towards "hospice" care. Oddly enough, it was less scary for me. The road was "predictable" and more "controllable". We knew what the result would be and the storms on that path appeared more calm than the path to transplant. I wondered how on earth, I would ever be able to embark on the journey of transplant. Such a HUGE task to take on for any strong person and I was already bruised and beat up, weak and tired, weary from the road I had travelled. I am moved to tears as I write, because I'm here and I'm doing it... I don't know how, but by God's grace and the loving support you all extend to us, one step at a time, one day at a time, we are walking the battlefield together. I'm just amazed at how your prayers carry us, how we feel like a team, an army fighting together. You truly carry our burdens. And, His grace is sufficient. When we came to Cincy two weeks ago, and it was very clear that God brought us here, we gained great peace knowing we were on the path He wanted us to be on. I still don't know where the path will lead, but I am so grateful for His constant care, His love, His grace, His mercy, His compassion, His power, His authority, His tenderness, His faithfulness, His wisdom, His strength, His courage, His timing, His protection, His plan, and HIS FAMILY... ALL OF YOU!!!!! We couldn't do it alone... that's for sure!!!!! We love you all so much! Keep PUSHing and PULLing! More later. Much love, Amy
Wednesday, January 31, 2007 12:35 AM CST
******7:30pm UPDATE****Mack had a good day, busy with all her therapies and teachers. We have just noticed a rash on Mack's legs and ask you to pray for resolution of the rash along with continued prayers for NO FEVERS. Here's a picture from today. Keep praying, we need you guys!
Gosh, I have to say we are all amazed that Mackenzie has done so well with this first round of chemo! Praise God! Such a direct answer to our prayers. Last dose finished last night and now we wait. Blood counts are definately plumeting... she is receivng blood as I type. Tomorrow, she will most likely get platelets. Sure wish there was a way to replace the white blood cells, but there is not... so she will be very susceptible to all infections over the next two to three weeks until her body begins making them on its own again. This "waiting" period is always so hard for me... feeling so vulnerable. Finding myself having to hand it over to God multiple times a day. Please continue to pray for protection from all infections and NO FEVERS! Mackenzie remains happy and playful... HUGE blessings for us! I've taken a few pictures today and hope to post them later this evening. Below is copy of a bulletin I posted on myspace regarding bone marrow testing... I'll keep you posted as I have more info. Thank you all for the amazing support you offer us! We have begun receiving mail here in Cincy and it is wonderful! If you want to send Mack something really special... a card with a $1 bill would make her day. She's found the vending machine down the hall and LOVES picking out a treat. She's figured out how to put the money in and choose the item. I'm not sure which is more fun for her.... the process of getting the item, or actually eating it! And she thinks she's "won"... "hit the jackpot", when the 30 cent change drops down. It is her favorite thing to do here! Thanks again for everything! Much love, Amy
Hello friends:
Many of you have inquired about being tested for a bone marrow match for Mackenzie. We are most grateful for your willingness to help in this fight for life. The BMT search team here in Cincinnati have found two umbilical cord blood matches in Belgium that are being brought over for further testing. In the marrow registry, there were only 11 potential donors that would match Mack. Usually when they do a preliminary search they get hundreds to thousands of potentials, but of that large selection, it only comes down to a handful that would actually match. Since Mack's options in the registry are so limited, we have begun the process of working with DKMS America who will run a bone marrow drive for Mackenzie. The drive itself will be held in the Chicago area, BUT ANYONE who wishes to be tested that lives out of state can do so through the mail. A kit would be mailed to you with an envelope and directions to return the sample. Both of these options will be free of charge and will only require a very small sample (a teaspoon) of blood to be drawn. Because we are just in the process of filling out all the paper work for the drive, I don't have the details yet as far as day, time, location of the drive or mailing instructions, but as soon as I do, I will let you know, and the information would be posted on Mack's websites. Right now, I would just encourage you all to think about whether or not this might be something you would consider doing. Even if you are not a match to Mackenzie, you may just end up saving the life of another child in the future. As a mom watching my child endure such trials, I cannot express what this small sacrafice would mean to our family and many others. Please pass along the information and spread the word to increase awareness of this need. AS SOON AS I HAVE SPECIFIC DETAILS AS TO HOW TO PROCEED WITH THE PROCESS, I WILL LET YOU ALL KNOW. Thank you for considering helping Mackenzie and many others in need. Much love, Amy
Tuesday, January 30, 2007 10:45 AM CST
******10:15pm UPDATE****** Getting ready to hit the rack, but just wanted you to know that Mack had another good day. We are savoring these good days and counting each blessing and praising God for them. "Oh Father, to experience your mercy is like no other experience. We love you so much and ask for your continued blessings on our family. Stand guard over Mackenzie day and night. Protect her and keep her from all harm. Hold each organ in your hand and preserve it's function just as you have intended it to function. Attend to Mack's bone marrow Father, and restore each cell to health. Examine every cell in her body with Your perfect eye and destroy any leukemia that may be lingering and any germs that may be threatening. For you can see what man cannot. You don't need a microscope or a smear, Lord, you know every cell that makes up our little girl. Thank You for the four years we have had with Mackenzie. She is such a bright spot in our lives. Thank you for loving her even more than we could ever love her. Thank you for having a perfect plan for that little life and for using her to bring glory to Your Name. Hear the cries of many calling out on Mackenzie's behalf and bless those who have reached out to our family and whom have prayed fervently for Mackenzie. Father, let there be many more good days ahead. Stay near to our side and unveil our eyes so that we may see You more and know You more. In Your son's Name we pray, Amen." More tomorrow. Love, Amy*****
Just wanted you all to know that I had the caringbridge site move the guestbook entries and journal entries in a new folder. There were so many entries that it was taking quite awhile for many of us to open up the guestbook. All the entries are still there, you just need to click on "view older guestbook entries" or "view older journal entries" and you will be able to view all that has been written. So if you are one of the first entries today, that is why you are the only one that opens up.
Ok, enough technical stuff...Mackenzie had a good night and got as much sleep as possible in the hospital. Tonight is her last night of chemo - yea God! Her counts are starting to drop and we expect tomorrow she will need a blood transfusion. She woke up happy and worked well with speech therapy. Her massage therapist came today and she LOVED getting massaged. We were cracking up because she had this big goofy grin on her face the whole time. She said, "Ahhh, dat feel good". I guess she has officially declared herself a princess! She will have massages on a regular basis, not sure yet how often per week. She continues to work with speech therapy, occupational therapy and physical therapy (her least favorite), child life and has teachers working with her on school work. Besides her massage therapy she also has a music therapist that will see her regularly, but we haven't met him yet. She is a very busy little girl! Our social worker is helping us apply for some grants that will help us financially and we will meet with the financial advisor sometime this week. The organization here continues to amaze us. Many blessings today in Mackenzie's attitude... she's happy and content. I slept well at the Ronald McDonald house. The house itself is actually right across the street from the hospital, but they have a shuttle that runs door to door every half hour. Its worked out great when leaving at night especially. The house itself is big and clean. I think the house is about four years old, so it is pretty new. Our room sleeps four, kind of like a big hotel room. All rooms have their own bathrooms. They are planning on moving us to a suite as soon as one opens up. It will sleep six and have a seperate sleeping/living area. Volunteers come in every night to cook dinner in the main dining area if we want to eat there. Still trying to get the whole "schedule thing" down. I know they have volunteers come in frequently to do activities with the families... all different types of stuff, I just havent' been able to look at the schedule. There is a small workout room with a few treadmills and weights. Someday, I hope to use it. There is also playrooms, craft rooms and a "school" room for kids who are going to school there. There is a small library with just two computers with internet access. They could use more computers, I think the house has around fifty sleeping rooms. The hospital just purchased land right next to the RMH and are going to build a house for transplant families only. Sounds like it will be amazing when it is up and running.
As for today, the doctors have decreased Mack's IV fluids, so hopefully she won't be up to the bathroom as much in the night. After her last infusion of chemo tonight, they will just be supporting her through the recovery phase of her bone marrow. Please continue to pray for protection from all infections, protection of Macks heart, liver and kidneys, and healing of her bone marrow. (AND NO FEVERS!) Also, please continue to pray for wisdom and guidance for the doctors as they make important decisions on how and when to proceed to transplant. Continued prayers for the perfect match to be found... either bone marrow or umbilical cord blood. Asking God to make it abundantly clear to the doctors which donor would be best for Mack's little body. He already knows!
Steve is leaving this afternoon to head back home and will return on Saturday. My mom is on her way back down as I type. Praising God for my incredible family (immediate and extended) who continues to make huge sacrafices with great efforts to support us through all of our trials. We have been in crisis for almost twelve years now. Clearly, God has been the bond that has united us even closer through all these difficult circumstances. Praise Him! Not much else for now... I'll write again later today. Much love to you all, Amy
Monday, January 29, 2007 12:37 AM CST
*****10pm UPDATE***** Not much new going on here. Overall, another good day for which we are praising God. Trying to shake the feeling of being a sitting duck with a loaded gun pointed at us. I KNOW God is bigger than any of this and fully capable of handling what "tomorrow" may bring. Trying to focus on KNOWING HE WILL care for us, instead of WONDERING when the bottom will fall out from under us. I guess we plumeted so many times its hard to shake that feeling and satan likes to remind me of that. Clinging to the foot of the cross and clinging to His promises, listening to The Voice of Truth!!!! He will NEVER leave us! I'm claiming that! Keep praying for protection for Mack and more mercy, more grace and more healing. More tomorrow. Love, Amy******
****Mack can receive email cards through the hospital at the following link: https://secure.cchmc.org/gbl_ecard/select.asp
I have every intention of writing first thing in the morning, but our room is like a revolving door from eight to noon with nurses, doctors and various other staff. Mackenzie had a good night last night and I actually slept pretty good in the room with her thanks to some help from tylenol pm. The nurse actually had to wake me up to help with eye drops, I didn't even hear her come in. We finished the ARA-C (chemo) and are celebrating the finish of that nasty drug. Two more nights of the "blue" chemo. No more steroids either, so hoping to see the mood swings decrease. The doctors were surprised that they never had to start a drug called allopurinol or add bicarb to her fluids. Her body was able to handle the destruction of the leukemia cells without uric acid build up. When we were admitted last week, Mackenzie had 45 percent blast cells (leukemic cells) in her CBC. This morning, there was no reading of blasts in her CBC, but she may still have them in her bone marrow. Keep praying for destruction of every last leukemic cell in her body. And praise God for more answered prayers. Hoping we can REALLY shock the the docs with NO FEVERS over the next several weeks! That's kinda catchy huh? "Shock the Doc" They say no one escapes without fevers from these intensive chemo's. Do they know that all things are possible with God?
I'm loving all the journal entries and find myself reading and re-reading them to keep me going. I was cracking up at Jake's comment about Mack "rocks the beanie"! Looks like the beanie will make its appearance next weekend as Mack loses her hair again.
Well, I suppose I should run, and get some lunch. Thanks again for ALL that you do for us. We love you all. More later. Love, Amy
Sunday, January 28, 2007 1:48 PM CST
*****PLAYING IN THE PLAYROOM THIS AFTERNOON... ANOTHER BLESSING!!!!!*****
I can't believe it is 3pm already, I don't know where this day has went. Praise the Lord, Mackenzie did well with the new chemo last night. Today has been a rough day, only because it required a very traumatic dressing change on her sore arm with the PICC line. I also deaccessed her port which she never likes, but the blessing in it is that we can leave it out for now. One less tube hanging out of her little body. "Thank you Lord for your new mercies today. Just as you promised, they are there for us every day. I'm clinging to those mercies and looking forward to them every morning. Give me eyes to see them even when the dark is closing in on me. You have been so tender and gracious as you've watched over and cared for Mackenzie. She has been through so much in her short life. Father, she has been fighting for over three years and she's only four. You have seen every trial, every battle, every hardship and every heartache. All she knows is illness. Please God, command the leukemia to exit her body and heal that precious little girl of Yours. Bless her with health and enable her to enjoy all the gifts you have given us here on earth. Lord, bless Mackenzie indeed! For she has endured great suffering, but in her suffering she has brought glory to Your Name. Thank You for bringing meaning and purpose to her suffering. She calls on You, Father. Thank You for being near to her. She knows Your faithfulness and finds security in you. Father, we ask that You stand guard over Mackenzie day and night. We pray that You would protect her from all infections and keep her little body fever free as her bone marrow recovers. Breathe life into Mack, just as You did Lindsay. We look to You Lord, and continue to place all of our trust in You. Give us strength and courage to endure this path You have set us on. And continue to extend us more mercy and more grace. Father, we love You so much and praise You for all You have done AND ALL YOU ARE GOING TO DO!!! Amen."
Please continue to pray for Mack's body to tolerate the chemo's and for protection of her organs. ALL THE STAFF here are expecting fevers to start sometime this week. Praying God's mercy and power would manifest in His protection from all fevers. Keep praying. More later. Love, Amy
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