tuesday

Thank you all for patiently waiting for this update. I wanted to text each of you individually to give you an update....but the procedure took and hour and a half longer than it was supposed to and we had to rush to get the babies and then i had to rush to bryces open house tonight. thank you so much for the amazing ladies that sat with me today...that waiting room has surely never heard so many giggles!!

so...here is the scoop:

- his intestines are slowing down

- his lower sphincter is not working well

- there are abnormal contractions taking place along the lower esophagus

- the lower small intestine/bowel area is not functioning well

Now...what does this mean? Well more tests of course. He he will have a catheter placed in his esophagus to test motility and there were quite a few biopsys taken from each area today. We hope to hear back from those ASAP...but we are not going to be holding our breath.

They basically said he could expect to continuously regurgitate bile...he possibly (in addition to everything else) has celiac disease...he has bacteria growing in his stomach because of how long it takes for him to digest....he will begin probiotics to help with that....and so on blah blah blah.

The doctor pretty much said this is just all part of the disease he has (scleroderma...which sure is progressing faster than we EVER thought). Its not something that they can fix. He can manage some of the symptoms by watching what he eats...and thats about that.

We will not stop fighting. We will not stop praying. We will not lose faith.

quickie

Here is a quick medical update.

Justin had two appointments on Friday. The first was with a gastroenterologist. They discovered that Justin's esophagus is staying up all the time (we already knew this part), but that now the bottom of his esophagus is shrinking and hardening. This is causing many problems for his entire tummy system. Which is referred to that as guts when you are a man though :) The scan showed that there are possibly several things going on in there including the possibility of parts of his intestines being paralyzed. The only way to find out what all is going on and what can be done about it is to go in. Yup. All the way in :( Tuesday afternoon Justin will be put under for an endoscopy and colonoscopy. He is an "at risk" patient so I will stay at the hospital during the procedure. Please cover him in prayer on Tuesday. You may also give him a little shout out on Monday while he is FASTING!!! I am already scared about that!

Speaking of fasting...along with these gut issues comes a new diet. He is to follow a low fiber and low fat diet. For those of you bringing us meals...thank you SO much! It is hard for us to have to be specific because we have really been enjoying all the yummy things that have been brought to us. It is truly a blessing to have just one less thing to worry about in the evenings.

His next appointment was with his regular rheumatologist, Dr F. He found that unfortunately the scarring in Justin's lungs has spread north. This was the first time that anything has been detected in the top of his lungs. He is currently researching a pulmonologist. We need one that is familiar with autoimmune diseases. Dr. F is working with the UT Health and Science Center to find the best local dr.

There is quite a bit of hardening and pain happening in Justin's body right now. He is going to do his best to stick to (by drs request) a maximum of 40 hour work week. Big ambitious pants has a hard time with that :)

Please pray for peace and rest. We have stepped up the game in prayer...but that is a post for another day :) Thank you all for loving us...and PS: We survived the first week of kindergarten!! I have started back to "work"....which is hardly considered a job because its 2 days a week and I get to love on sweet 4 year olds and hang out with my best friends all day...and MOPS leadership duties are in FULL swing....so keep those prayers up and we will keep our chins up!!

xoxo

the macs

unshakable faith

A very dear friend reminded me of the story of Job. Job was tested many many times and remained a strong man that honored and praised God no matter what. He never lost sight of who his God was. And God brings all things that are of GOOD. His friends told him to repent...but he knew the truth in his heart and did not let satan get a hold on him.

We are not Job....we are not a wealthy family with 7 sons and 3 daughters. BUT we are children of God. We we were created in His perfect vision. Justin, myself, Bryce, Brody and Braxton are here on earth JUST as HE wanted us to be.

Job showed the true meaning of "long suffering" ...he showed that sometimes there is sickness to later glorify the Lord.

I dont know if this is relative to Justin's story. I may not ever know. I dont even deserve to know. But it reminds me to be hopeful. It reminds me that there are elements to Justin's life and his health that can truly serve a greater good. We will NOT stop fighting and we will NOT stop praising Him and we will NOT stop rallying in prayer. But we WILL stop demanding answers and we WILL stop feeling deserving of knowing every step of His plan and we WILL stop letting satan steal from the many other blessings around us.

I agree today that I will try my very best to stop viewing our trials as burdens, but as bigger ways to glorify Him. Bigger and better ways to show others how redeeming faithfulness can be. We are called for a bigger purpose. Our story shows great trials over the past 5 years...and we have never looked back and said "oh gosh...we were so alone" Never. Not once. We always knew He was walking with us. Him and a big ol' bunch of His precious children.

Justins life right now is scary. His prognosis is awful and his symptoms worsen each day. Saying that I feel discouraged is a huge understatement. But each day that he lives is another day for him to rely on the Lord and thank him for each blessing.

"Wait on the LORD; be of good courage, and He shall strengthen your heart; wait, I say, on the LORD!" (Psalm 27:14).

it happened...

Today came. It really did. Bryce went to kindergarten.

ALL DAY.

We had one wild and crazy summer. It is not quite how we thought it would go...but His plans for us are bigger than we will ever understand. We had a big awesome last week...a friend took us to fiesta texas, we swam lots with the fickeys, we played with fun friends, we ate pizza under sheet tents, celebrated the end of summer with sunday school friends and spent as much time with good friends as we could possibly fit in!! Summer of 2011...you were a wacky one...but we made the best out of you!!

I just cannot stop thinking about the fact that Bryce is really BIG enough for school. I remember the moment he was born...I made the nurses immediately put a hat on him because his head was shaped funny :) He is been my independent little fire cracker...and our house is going to be missing some spark during the day!

He was SO very excited about today. He could absolutely NOT wait.

I only cried like five times...and I did NOT cry in the classroom. So hooray for me.

good morning pancake breakfast!!

Mommy and Bryce walked...while Daddy followed in his truck :)

they talked the whole way!

this is bryce's precious teacher!!

Thank you all for your sweet prayers on this BIG day. It is going to take some getting used to for sure!! Baby brothers were sure excited when they woke up from nap and bubby was home!!

Now onto the dumb news. Justin has not been feeling very well. He is not sleeping and is having some pretty yucky esophagus issues. We are looking into getting him into a gastroenterologist asap. He is experiencing skin tightening due to the scleroderma. It is very frustrating and scary. He has been working a lot and really enjoying that....it really helps him to forget his worries and focus on other things. We are battling the insurance company daily. They just do not want to cover anything anymore without a fight. Please pray for comfort and sleep for justin. Please lift him up each night before you go to sleep. It is agony watching him lay there miserably awake and hurting all night. It looks like we are going to be on the phone over the next few days finding the best local doctors. God has got it handled...please pray that we are obedient to where he wants justin to be and do not make emotional decisions. Please pray that no matter what we are doing...that we will stop and listen for His guidance.

other news

So recently the focus has been all on Justin...and well...we DO have other family members. And they are pretty cute!

Braxton is just our little stink in the pants. He is a really nice little bulldozer. Seriously. He is very sweet and precious...but could be a linebacker for sure. We are excited for him to start preschool in a few weeks...he will have our beloved Kathy. Nobody tell Brody...he doesnt know yet :) He is talking up a storm and he really cracks himself up. I am jello in his hands.

Brody is still trucking along with the potty training. He does it when he wants to...and doesnt when he doesnt want to. :) He will be going into the 3 year old program next year with Kelly (who was Bryces first teacher at FBC!). So exciting for all of us. His language and communication skills are developing more and more. He makes us proud! Please begin to pray for the ARD that he has at Aue on Sept. 7th. We feel that God has spoken clearly to us on where Brody is supposed to be next year and we are looking forward to setting up speech therapy through the school and taking him to preschool with his baby brother on Tues/Thurs.

Now....onto the BIG news. Bryce got to meet his kindergarten teacher last night. It was so cute to see him so excited and in a brand new element. He was thrilled. He can hardly even wait. I am going to miss having him with me all the time...but I know it is ready for him to spread his little wings. He is bustin outta this joint!! I have only cried about it 5 times. I am very proud of that.

We now take a moment of silence for rocky the beta fish. He has gone to heaven after a fabulous 21 month stay here at the mac shack. We brought him home when we brought Braxton home....I MEAN....Santa brought him here the next morning!!! Silly me.

Bryce found him yesterday and said "oh no...rocky's life went to heaven and he left his body in my room" We prayed for him and then daddy took his body outside to do whatever it is daddys do with fish bodies with no life.

Justin has been working. He still feels pretty awful...his medication side effects are terrible...but it makes him feel good to work. He is not sleeping and the "reflux" is unbelievable...but his muscles dont hurt and he is not swollen. He is being very cautious with germs...he sanitizes and showers a LOT and even wears his mask sometimes. As flu/sick season approaches....we will have to be even MORE cautious...but we will deal with that as it comes. We continue to be encouraged each day as people love on us and reach out to us. The support is unbelievingly overwhelming and so so appreciated. He will see a liver doctor in a couple of weeks for testing and we are currently looking for the best local pulmonolgist to be proactive in his plan here...since he can obviously not go to Cleveland every month for check ups.

We are learning everyday how to deal with this. We sure do NOT have it all figured out...its a constant work in progress....and we are OK with that.

BIG prayers for our BIG boy on his BIG day Monday!! Aue Elementary....here we come!!!

learning to deal

The day has arrived where this rock is starting to shiver. This past week has been one of the most emotional for me. I am facing some major struggles with doctor facts vs. biblical facts. Justin has been extremely optimistic. His strength and stamina is wearing me out! I remain very confident that our God will heal Justin. But I have been facing some scary truths....God promises us eternal life and healing...but he does NOT promise us tomorrow on earth. I have written this blog post several times...deleted it and then come back to it. There are some harsh realities to face...but I still go to bed each night with the comfort that no matter what any doctor says...He will never leave my side. I cannot always pretend like things are sunshine and roses...and God doesnt expect that from me. What a relief that is. It is comforting to know that He loves me just the same when I am raw and angry as when I "have it all together." Our lives are forever changed. I will continue to wake up each day and make the decision to live for Him...glorify Him...honor Him. BUT I am freed in knowing that when it takes me a little longer to get to that place of "light"...well...He forgives me. He understands. There will be days of suffering and heart ache and pain (for me emotionally and Justin physically). There will be days that feel "normal" and days that we are lost. All of that is OK. God never said he was going to tie us all up with a little bow and grant us the perfect and most painless life. We are blessed to the rim...overflowing actually! Just not necessarily in the form of Justins health. And that is getting easier to accept each day.

The Lord WILL heal Justin. While he is here on earth would sure be more convenient for me :) But that may just not be His plan...and who the heck am I to disagree with His plan? I am sad and a little weary...but also very thankful. Things sure could be worse.

By His stripes we are healed. And we are. Jesus didn't die to heal us...he died to set us free from the domination of sin. Salvation is good enough for me!!

More health updates later...nothing has really changed. But my heart is changing...and I think its good. I am definitely struggling...but it is opening my eyes to truths that are more freeing than I could ever explain.

I appreciate each of your prayers during this transitional time!!

thank you

where 2 or more are present...He is there. what about where there are 500 more are present?! tonight was the most spectacular showing of Gods love I have ever seen. what an outpouring of His love shown in the work and love put into tonights pancake supper. i know that weeks of planning went into this event. there were 100 silent auction items, 500 people were served DELICIOUS pancakes, some REALLY cute tshirts, a super fun bouncy house and the most amazing group of people serving in this whole wide universe. i have some of the most amazing friends that ever existed. it was overwhelming in so many ways. our community is truly awesome. Justin had a poor report about his lungs about 30 minutes prior to the pancake supper...but God showed us through our friends (and total strangers) that He loves us so mightily and NO diagnosis can take that away. My boys had such a fun time. It is so special to see how loved they are in our church home. I looked around all night and each time there was someone playing with them and loving on them in the most incredible way. I only wish we could have walked around and spoke to each person. I saw so many dear friends....truck loads of them...that I didnt even get to hug or thank. What a whirlwind. The women that organized this event are truly my most precious friends. I just dont know what I would do without them. Each time I looked around I saw another dear friend working hard. I even saw some pretty awesome gals possibly fighting over some super cool auction items lol. The intimidating stack of medical bills that we are afraid to look at does not seem so daunting anymore. Thanks to the outpouring of love from His people...we can look to the future and focus less on dollar signs and more on getting the most handsome man in the world BETTER!

The current health update is nothing exciting. There continues to be a major concern for his lungs. He will go back to Cleveland in October to discuss new treatments (possible prograf for organs)...and until then we will pray that his lungs will stop collecting scar tissue. His muscle enzyme levels are creeping back up and he is fighting painful viral infections. His medicine count just keeps going up and up. We rest all of the burdens at Jesus' feet tonight and rest thankful for his peace and grace and love which was shown to us in so many ways this very evening.

best day ever

so yesterday topped the charts on "yuck days"....many many people saw and heard my tears yesterday. thank you sweet angels who lifted me up :) you all just know exactly who you are! i knew today was going to be better...i mean for real...how could it be worse?! but i really just had a gut feeling it was going to be GOOD. i was right. la te da for me! justin called this morning and said he was getting discharged! they came back with the biopsy results and it was indeed a fungal infection. this was not our first choice...but it sure wasnt the last! we took it as a praise. the heavy heavy antibiotics that he had been on for 6 days had really done some good work. he was prescribed a new fancy oral (and by fancy i mean that it cost the same as a pony) antibiotic and told he could finish treatment at home!!! he was over the moon to call with this news and HE was more than thrilled to send me on to nashville! i was hesitant because i want to soak up every minute of him that i can...but its important to him that i get this "break" and get filled up in worship and fellowship...and i am pretty excited :) he is such a selfless man. i am truly blessed! he told me that he had prayed and prayed that this would work out. he really wanted me to go and he really wants to get back to work (i know...he is crazy). we truly feel like this is a testament to yesterdays obedience. justin will not have to wear a mask all the time...just in very high traffic places. he will just need to be more cautious about germs and debri.

so...they will not start the treatment programs (possible prograf etc) for scleroderma and polymyositis until his lungs have straightened themselves up a bit. the interstitial lung disease needs to get a grip and MOVE ON! he will need to go back to cleveland in october to hopefully get that going! we will pray that it can push those other dumb diseases into remission!!

bryce and i got to have a very fun date today! we got his backpack for kindergarten and had a fun date with special friends to see smurfs! AND he is getting to live it up this weekend with his friend davis at the lake!! lucky guy :)

love you all and keep bringing on those prayers!!

yucky tuesday

Nothing too great to report precious friends.

Justin is still in Cleveland. He had a great couple of days with Vic and is now getting some much needed time with his parents!! He is feeling blessed :) I am so glad he has had good company while I am at home with our babies.

Today has been a very sad day for me. Justin has been burdened with more and more bad news. He still does not have lung biopsy results, but has been told he will have them tomorrow at the latest. He is now on a new set of antibiotics. His pulmonologist cannot tell him yet if it is the interstitial lung disease or scleroderma that is causing the most problems right now. Praying for news on that asap because that will determine treatment. And as for that little word "treatment"...its not medically a possibility. Suppress is the word they like to use. Whatever. I am more than sure that God has a whole different vocabulary :) Justin will need to change his lifestyle forever in regards to large crowds and germs. He needs to be extremely careful and steer clear from crowded places. If he needs to be in a busy place he will need to wear a mask.

I will not be going on my annual mops convention trip, because i need to be with my family. Broken hearted for sure...but hear loud and clear that with my family is where I need to be. I am sure going to miss some special time with some of my very best friends. Justin wanted me to go very badly and be "normal" and get "filled up"...but God has something else planned out for us right now. It is going to be a rough few days. Justin wants me with the kids and I want to be with him. Our reality is changing more and more...Justin diagnosis are getting worse and more dark. Please Please Please continue to lift us up everyday. Satan wants in this family so bad...he wants in our house and in Justin's body. WE WILL NOT ALLOW IT!

saturday

A new diagnosis? YUCK!

In addition to polymyositis and scleroderma and RA they have now come in and talked about this:

Interstitial (in-tur-STISH-ul) lung disease describes a large group of disorders, most of which cause progressive scarring of lung tissue. The scarring associated with interstitial lung disease eventually affects your ability to breathe and get enough oxygen into your bloodstream.

Interstitial lung disease can be caused by long-term exposure to hazardous materials, such as asbestos. Some types of autoimmune diseases, such as rheumatoid arthritis, also can cause interstitial lung disease. In most cases, however, the causes remain unknown.

Once lung scarring occurs, it's generally irreversible. Medications can slow the damage of interstitial lung disease, but many people never regain full use of their lungs. Lung transplants are an option for some people who have interstitial lung disease.

We knew he had lung issues...but now they have a name. There is something additional going on is his lungs but we will have to wait for the biopsy results before we will know what. Possibly a fungus...opportunistic or systemic. Too fancy of words for this gal!

He is having trouble with his oxygen saturations. He is around a steady 89 and when walking around it can drop down to 85. They have him hooked up to oxygen now (which he thinks is so annoying) TWO iv's and heart monitors. Wouldn't you just love to be Justins nurse right about now??

I got the pleasure of sleeping on the hospital floor last night (sorry kelly!). I had a chair...but it kept closing me up inside and I was scared I was gonna get stuck forever...so I made a pallet. A pallet on a cold tile floor is not quite as cozy as a warm pallet in front of the tv at home...but I got to by by Justin all night so whatever.

I am headed home this afternoon. No plans on when I will come back. One day at a time. I cannot wait to squeeze my babies necks!

Lamentations 3:22-24

Because of the LORD’s 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.”

PS: did you know my friend katie is a runway model??? :)

friday in cleveland

today has been a whirlwind. we woke up at 6:30 and got justin some caffeine to try and help with his migraine. we then went over to see Dr. Parambil (pulmonologist...this is the sweet dr. that has a baby named Bryce with downs syndrome). He was booked solid and had no time to see Justin while we were here...that is until he looked at Justins lung ct scan last night. So...he asked Justin to come in at 7:30 this morning. He was there waiting for him when we arrived at 7:15. He showed us the scan of Justins lungs from 4 weeks ago in a split screen with the scan from yesterday. It was such an unbelievable difference. The dr was extremely concerned. The amount of debris and scar tissue that has formed within a month is horrible. He said that he would need to admit Justin immediately and have him monitored and on IV antibiotics. He called the situation life threatening. He said there is something devastating his lungs and they need to get on it asap. He has two separate IV's in to get antibiotics in faster. He had his blood patch this morning and now his spine is hurting badly and he has no relief from the headaches. His frustration is at an all time high.

Side note: there will be a bone density scan in his future due to the possibility of osteoporosis.

He then went in for his lung biopsy and bronchoscopy. Before they started his fever spiked to 104. These unexplained fevers are getting old and sure making Justin miserable. They went forward with the procedure (if you are curious how they do that...its a camera through his NOSE). He was in recovery for an hour and is now back up in the room. THE PRIVATE ROOM! This morning when we were talking with Dr. Parambil...he asked about Brody. I told him that he is using the POTTY!! He was so excited for us that when Justin asked for a private room he said "hey, no problem!" Another quick side note....How awesome is that about Brody? He is doing so great on his little frog potty. I am so thankful that his favorite teacher ever has him this weekend so she can help him with this. We love you Ms. Kaki!!

My sweet aunts have had Brax and Bryce and they are doing great. Bryce is finishing up his last day at camp today and Brax got to go to a bouncy place in new braunfels this morning!!

So...Justin will not receive these results until Tuesday or Wednesday. Dr. Parambil told him to expect to be here a week. I am going home tomorrow night and the owner at Toyota (Vic) is coming to be with him through the weekend. I am so sad to miss my special "mother/daughter" date with Cathy Smith tomorrow at the Hill Country Pregnancy Center Luncheon and even more sad that I wont get to watch Katie, Barbara and pretty Addie strut their stuff down the runway. I will have to ask for a private showing :)

I just do not know what the future holds at this point. I know our Lord has it figured out. He will show us the plan when he is ready. We have been praying for answers for 3 months now...and they are really coming in...slowly but surely.

Shout out to my 3 precious friends who just had babies within the last 2 days and a special prayer for sweet Andrea who is READY to meet baby Ian.

Some of these procedures are just coming full circle in our lives. Respiratory things give me the heebies as I remember all the things we went through with Brody and his baby lungs in his first year. Justin is now suffering from severe reflux issues which is also something that has been an ongoing issue for our Brody. They both need a scope done....yuck.

Justin is once again disappointed to miss more work. He is also annoyed that he is on break from school because he gets bored in the hospital and likes to do school work while he is here. What a weirdo.

My sweet friend Dena sent me a quote from a book the other day "we will all pray you through this, you wont need to do anything" That is so comforting to me right now. When I try and pray right now all I can do in my head is sing praise and worship...there are just not a lot of words left...so my friends...I ask you to take over. Pray for us...as often as you can. Please.

back in cleveland

we got out to a pretty yucky start yesterday. we left for the airport at 5am and made it to chicago around 9am. when we arrived, we found out that our 11am flight to cleveland was cancelled. we then got on standby for the 1pm flight...they could get me on but not justin. so....we had to wait for the next available flight which was at 6pm. so...we basically got to enjoy the inside of the chicago airport for 9 hours. we made the best of it...ate a bunch of junk food and laughed at all the strange people passing by. we were so so tired when we finally got to the hotel at 10pm cleveland time. we were disappointed that justin was not able to get his blood patch yesterday, but he is now rescheduled for that procedure tomorrow morning at 8:45am.

so on to the serious stuff. justin saw the rheumatology team today at 12:45...we were there for 2 hours and this is what went down:

the muscle biopsy confirmed that he does indeed have overlap syndrome of polymyositis and scleroderma (systemic sclerosis).

it also found that he has degenerating and regenerating myopathy. what is that? basically his muscles die (because they are being attacked)...then when they try to regrow...they are attacked by his own body again and they reform all crazy like.

this also causes muscle inflammation...which is currently being somewhat controlled by the chemo.

there are other places in his body that are being harmed by this inflammation. one being his lungs...which is in turn causing dilation of the left ventricle of his heart. AND his kidneys which can lead to hypertension.

his lungs are in a whole other category of concern on their own. both the polymyositis AND the scleroderma are causing issues there including haziness and inflammation. he is not a candidate for transplant because the same issues would come back in a new lung.

his liver is still causing concern...possible wilsons disease (body does not break down copper...which is surprisingly found in many foods and water)...more tests on that later. they cannot deicide if he should be put back on the methotrexate or imuran. both are harmful to his liver...but at this point it has not yet been determined which will be more harmful...the side effects of the medications or the diagnosis. more can be determined on this when they can determine whether muscle enzymes are leaking into his liver OR he has liver disease.

there is also new concern with his esophagus...he will have to get a bronchial test or endoscopy when we get back home. when he breaths and swallows...his esophagus does not close properly. this is called patulous.

they will begin weaning him off of the steroids over the next year...but he will take atleast a small dose for the rest of his life.

they need to find an immune suppressant that will control all the inflammation in his body. unfortunately there is NO medication that is FDA approved for this. so...he will just start trying things. the first thing they want to try is called prograf. this medication was created for transplant patients to prevent rejection from their bodies to the new organs. since justins body is rejecting its own organs...they think this could be helpful for him.

SOOOOO...this may just seem like a lot more UNanswered questions...and it is...but its actually a ton of information and that is really what we came here to get. we still need clarification on so many things...but none of it is going to be an overnight process. he had another ct scan on his lungs today and more blood work. he will get the blood patch done tomorrow morning and we are praying for immediate relief from the painful spinal headaches. he did wake up again with a fever this morning also. we are praying that will subside when the headaches do.

As I am typing this now...we received a call from Dr. Parambil the pulmonologist who just looked at justins ct scan. His words were "I am so very sorry Justin...I saw your scan and am very worried" He wants justin to come in for a bronchoscopy and lung biopsy immediately. We are on the phone now scheduling that and it looks like it will be around 2pm. He said that scar tissue is rapidly building in justin lungs.

We just want to go home.

preparing for cleveland...again

justin has just been trucking along. still having random fevers...severe headaches and his other typical symptoms. he will go today and get a blood patch in hopes that these headaches are "spinal headaches" due to the lumbar puncture and spinal anesthesia. he is still struggling with his breathing and will unfortunately be dealing with the affects of pneumonia for a while to come. we have had some amazing prayer time and friend time recently. it has meant so much. we are making some delicious lemonade out of all of these lemons and its crazy sweet. we have spent some very precious time with some of the most amazing people that we have ever known. God is so good and we will never stop thanking him for our blessings.

did i mention that justin made the deans list at university of incarnate word?????

i know many of you were wanting to know of a way you could help! our precious church family is hosting a pancake dinner for our family and another family! if you cant make it...get a tshirt! they will only be on sale until thursday night at midnight!!

www.pancakesinboerne.blogspot.com

so tomorrow we head to cleveland again! stop now and pray for a peaceful trip. we are no longer praying for answers. we know that God has the answer...and its healing...he promises us that through his son Jesus. pray for our kids as we leave them...again.

shout out to my sweet friends the daleys! we sure are going to miss you guys! come back from sc to visit soon...especially around christmas...it wont be the same around here with out that italian santa. PS: all you pregos....no babies while i am gone either!!

home again

so this week threw us for a little loop. when a "normal" person gets pneumonia...they will have it for about 10 days. justin will suffer the effects for 6-8 weeks. there are already concerns with his lungs (due to the spreading fibrosis) and now his oxygen saturation levels are lower than they need to be. he has been issued an oxygen tank (triple sad face) to use as needed. he will also be required to use it while flying to cleveland next week.

they did this CRAZY test to make sure there was no other infection in his body (he was fever free yesterday but then it went back up today)...and this is how it goes:

they took out his blood (like a BUNCH)...took the white blood cells out of the blood..."tagged" them...put them back...and then watched them on a scanner every six hours.

i have a headache from even thinking about how that would be possible.

it was confirmed that all the infection is lying in his lungs. he is on antibiotics and an inhaler and is now HOME!! they said there was nothing else they could do for him there so he needed to go home and sit tight and rest for cleveland. we have still not heard any preliminary results on the muscle biopsy. we may have to wait until next week...but we are prayerful for just a few answers before then!

justin was pretty bummed about this trip to the hospital...being away from the kids and work and life is really starting to take a toll on him. he didnt really want visitors this time...he is just over it. so we had some really great together time...you have to get pretty creative and silly when you are "locked up" for days at a time. we had a blast and pretty much just crack each other up.

one HUGE praise is that justins swelling is completely gone! not sure if it is the chemo or steroids...but something worked!!! his muscle pain has decreased and his CK levels are down to 1000 (still about 800 over...but hey...we will take it!!)!!! there are still so many other issues and answers we need etc.....BUT these things getting better is such an exciting thing!! we 110% thankful to our Lord for providing some relief.

so my last post about our new normal....well...it was pretty much the truth. this is just our new thing. doctors...tests...more tests...no answers...more tests....constant fear of illness...and on and on. can you imagine going through something like this without having God to lean on?

some pretty precious kids got together at the boerne YMCA and had a lemonade stand for justin!! how crazy adorable is that!!!??? thank you so much pontillo, bourgeois, wells, davis, amerman and malouf families for setting this sweet event up! we love all of your kids dearly and are so blessed that they wanted to help out mr. justin!!

back at the hospital

yuck. we have set up camp at northeast baptist hospital. i didnt see this one coming.

justin woke up monday morning with 102 fever & feeling AWFUL. dr. f got him in and was pretty upset to hear justins symptoms. with all the medications justin is on there is NO reason that he should have fever. he just finished a round of antibiotics on friday. dr f said that if his body was already to a point of fever...then the infection was already pretty bad. with justins immune system...ANYTHING is bad. his body is already attacking itself...he doesnt need any infection to interfere with the problems that are already there.

so...dr f admitted him so that he could begin testing immediately. he got a chest xray when he first came in and then went down for a mri on his brain. the only results we have so far is that he has pneumonia. he is aspirating and it is causing fluid to pile up in his lungs. he is down now for a lumbar puncture (spinal tap) and another ct scan on his chest. please join us in praying for only negative tests from here on out. he has started another round of antibiotics and is still feeling awful. when he went down this morning he had 101.5 fever and his pain is very high.

our babies are all tucked away in fun and exciting places. they are being loved on big time!! bryce got to spend the night with chris and brit and is at sports camp today, brody is with the davis crew and the lesters have little braxteroo. we were so blessed last night to have some amazing supporters. thank you so much marci, shayne, melissa and mindy for loving on us! our gifts and blessings from the Lord are NEVER ending! shout out to the crazies up at chi rho who are praying for jmac!! we love you guys so much!!

so more info to come i suppose.

Lyrics that are getting me through this day!!

Matthew West - Strong Enough

go listen to it...now

You must
You must think I'm strong
To give me what I'm going through

Well, forgive me
Forgive me if I'm wrong
But this looks like more than I can do
On my own

I know I'm not strong enough to be
everything that I'm supposed to be
I give up
I'm not stong enough
Hands of mercy won't you cover me
Lord right now I'm asking you to be
Strong enough
Strong enough
For the both of us

Well, maybe
Maybe that's the point
To reach the point of giving up

Cause when I'm finally
Finally at rock bottom
Well, that's when I start looking up
And reaching out

I know I'm not strong enough to be
Everything that I'm supposed to be
I give up
I'm not stong enough
Hands of mercy won't you cover me
Lord right now I'm asking you to be
Strong enough

[ From: http://www.metrolyrics.com/strong-enough-lyrics-matthew-west.html ]

Strong enough

Cause I'm broken
Down to nothing
But I'm still holding on to the one thing
You are God
and you are strong
When I am weak

I can do all things
Through Christ who gives me strength
And I don't have to be
Strong enough
Strong enough

I can do all things
Through Christ who gives me strength
And I don't have to be
Strong enough
Strong enough

Oh, yeah

I know I'm not strong enough to be
Everything that I'm supposed to be
I give up
I'm not stong enough
Hands of mercy won't you cover me
Lord right now I'm asking you to be
Strong enough
Strong enough
Strong enough

the new normal

the new normal at our house is very different than what it was 3 months ago. i have recognized that i may be a tad (ok....a BIG tad) controlling. oops. i just like things a certain way...is that so bad? well it is so bad when you dont know where you are going to be from day to day or who is going to be there or who will be taking care of your kids and so on. i am having to get over some stuff. i know that may sound ridiculous...but its kind of a big deal for me right now. everything has changed. justins whole life has changed...the way he is able to work, parent and live in this world. he does all of those AMAZINGLY well...just very differently than before. our finances have changed...our outlook on life has changed...our goals and dreams have changed. the way people talk to us has changed. the way we plan for things has changed...it all depends on how justin will be feeling or if we may have a doctors appointment or what if he happens to be back in the hospital??

lots of change.

change is good though...right?!

well... we dont have much of a choice on that right now. i guess we DO have a choice. we could choose to be angry about all of these things and annoyed (which happens every once in awhile because we are REAL people) and we could chose to blame or pout...but that is really not helpful. that is not how the Lord asks us to reply to trials. so when i get caught up moaning in groaning about how things are all different in the house...i need to remember that when God planned out our life...he wasnt thinking about how our laundry got folded...he was thinking about our hearts. our God is so so so much bigger than these silly worldly things. why cant i always remember that?! my dependence on His strength and understanding of His plan gets stronger everyday...but it doesnt mean that i dont struggle. i dont just wake up and feel fabulous and thrilled with our current situation. i have to pray about it EVERY morning. i have to put on a smile and KNOW that God will give me peace to make everyday a good day.

today justin woke up very sick. 102 temp...a migraine so bad that he cannot open his eyes...yucky pain all over...shortness of breath and difficulty taking in deep breaths. an over all YUCK day. he is headed to see dr. f today at 3. we are so grateful for dr. f and his concern for justin...he called us right back this morning and said he wanted to squeeze him in today FOR SURE.

that is just part of our new normal. calling the dr all the time...waiting for drs all the time...cringing when we go to bed at night because we are not sure what tomorrow will bring. its scary and frustrating.

it is going to take more than a day or week or month for us to get used to it all. BUT...we will get used to it all.

I do my best EVERY day to WORRY ABOUT NOTHING...AND PRAY ABOUT EVERYTHING.

please continue to pray for our appointments when we go back to cleveland on july 27-29th.

please continue to pray each and every day for us to continue to TRUST. pray for more good days...and for peace on the not so good days.

Proverbs 3:5-6

Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all you do and he will show you which path to take.

getting settled

The past few days have just flown by. It has been so nice to have everyone together and have order in our little mac shack. Justin's pain level is still very high. The spot where he had the muscle biopsy is still hurting him pretty badly. He is not able to walk around too much...and when he does...he pays for it. He gets very pale and weak and has to sit down a lot. All his different medications make him feel funny too...but he is not really sure which one causes the most trouble for him. Cleveland Clinic called this morning and scheduled his follow up appointment for July 28th. We are hopeful that we will hear some sort of news before then...but are continuing to rely on God's perfect timing on all answers. So...we will find out whatever when we are supposed to find out whatever. The drs have also discussed doing an extra chemo treatment each year. Bummer. The chemo is VERY expensive and no fun for Justin at all... so nobody was too excited about that info. BUT God went ahead and let us know His arms were still wrapped tightly around us. The very next day...a deposit was made into the wells fargo account for the EXACT amount of one extra round of chemo. We had not even told anyone about that. Pretty neat right? Justin is very eager to go back to work. Toyota of Boerne has saved his place and I know they are just as anxious to have him back! They have all gone out of their way to make sure Justin and the rest of us KNOW that we are family. Such a blessing. He has decided to go back for a few hours tomorrow and just take it slow. I have always felt that Justin was the most AMBITIOUS person that I have met...I knew from day one that he has taken his role as the provider in our family very seriously. Nothing is going to hold Justin back from trying to provide for his family...no stinky diseases will stand in his way!!! And speaking of ambition...he just got his grades back for the first summer session and he got all A's...again. He has not even informed Incarnate Word of anything that is going on with him. He kept up with every single paper and assignment while he has been in the hospital. It makes me tired just thinking about it.

Other fun things that have been happening include the fact that MY DAD IS HERE!!! HOORAY!! The boys all about giggle right out of their skin when he arrives. They love him so much and the feeling is so mutual. He hardly pays any attention to us because he is too busy playing games with them and tickling them and acting goofy. He fits right in. He was made to be a pop pop!!

I am also teaching VBS this week...which is one of my most favorite things in the whole wide world. It gives Justin some quiet rest time in the mornings and it feeds my soul to teach kids about Jesus.

I was honored to be able to help host a baby shower for one of my favorite friends, Andrea. I was so excited that we got home from Cleveland in time for me to make it! I also got home in the knick of time to witness Dena and Jacob get baptized!! Such a special day for both of them! The Heavens are rejoicing and I am so proud for them both.

So now we just truck along and wait for answers and appointments etc. He will see dr. f this friday afternoon. He is really looking forward to seeing Justin and getting all his info from Cleveland.

Andrea's Shower hostesses! (minus rebecca)

Tracy and Pat had too much fun with the diaper game!!

Tori and Andrea playing the diaper game!

The theme was "She's about to POP!"

prayer tree

by the talented christi

sweet friends!

HOME!!!

Justin is HOME!!!
He is currently laying in our bed with 3 stinky boys wrapped tightly around him...tummy full of cinnamon rolls (thanks christi!!).
He is in pretty bad pain...and is not very mobile...BUT he sure is HAPPY to be HOME!
So are you all wondering how he got home????
Best story EVER!
Our awesome friend is a pilot...and he was able to talk the person he flies for into letting him pick up Justin in Cleveland. He made calls and got fuel and all the other fees donated (his wife was pretty proud of all the effort he put into this!!). He didnt want Justin to have to suffer through trying to get on a plane with a million other people and nobody to really help him. He knew he was going to be miserable and hurting...so called in this one time favor. Pretty AWESOME right?! It gets BETTER...
Bryce and I were able to jump on for the ride there...Justin had NO idea. So he pulled into the airport parking lot today and saw Jim Clowney, Bryce and Me standing there waiting for him! I wish I had a picture of his face. Priceless.
So we just were little jet setters today. What an experience for ALL of us!!
Now we are all cozy and rosy in our little casa. It feels so good to have everyone together again!!
He will need to head back to Cleveland in 2 weeks and also make an appointment to see Dr. F here asap. So...I will get all that taken care of on Monday. They have changed several medicines and also currently decided that he needs to do two chemo treatments every FOUR months rather than every 6 months.
Thank you all for all of your support with EVERYTHING during this past crazy month. I think we still have lots of crazy ahead...but is sure is good to know we have a whole crowd of people ready to help at any moment.
Speaking of amazing people...Our best friends and AMAZING Church (FBC Boerne) are hosting an event to help with the new yucky financial burdens that come from being in the hospital for a month + chemo and ongoing tests/treatments. AND this awesome event will also benefit another incredibly deserving and faithful family.
You can get more information here: www.pancakesinboerne.blogspot.com

Please join us in praying for Justin's pain. For QUICK results on the muscle biopsy. For answers from those results. A NEW (and working!) treatment plan. And most of all REST and HEALING for Justin while he is home. I know he wants to just be able to go back to his normal life :(

Philippians 4:6
Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done.

he is coming HOME!

These past two days have been the worst for Justin. He waited all day yesterday for the surgeon to come get him. He was supposed to go to pre op at 5am. He waited and waited...not allowed to eat OR have his pain medication. Around 5:30pm they came in and told him he was rescheduled for today. The surgeon was not going to have time for him.
So...today he woke up and was not allowed to eat again. He was miserably and UNpatiently waiting. He said he didnt even feel like praying...he was SO miserable. So...about that time a Pastor from a local church came to pray for him. Man...God works FAST! Around 2pm today they FINALLY came and got him. He was in recovery for 6 hours. He is in excruciating pain. They gave him an epidural before the surgery and he is still not able to move his legs. He was not able to do regular anesthesia due to his liver and lung issues. He is flat out pitiful right now. I am heartbroken that I am not there to be with him. I wish I could hold his hand. He just texted me and said he has NEVER been in more severe pain. I cannot even think about that...because he has dealt with some pretty serious pain over the last few months.
The good news is that he still gets to come home tomorrow! I CANNOT wait to tell you all about that...but for now its top secret :)
A couple of things...
Do you guys just LOVE the new and improved blog? Thank you so much to my sweet friend Katie for the upgrade!!
Today the cutest delivery girl in town brought over the MOST AMAZING BUCKET of goodies I have EVER seen. And when I say bucket...I mean a big ol honking huge bucket!! I can tell that my most special friends filled it up...because it REALLY has all of our MOST favorite goodies in it! I am surrounded by the most amazing women in the world. How could I get through this without my sisters in christ to encourage me every step of the way??
One more tiny sidenote...
I am not sure if any of you remember THIS POST where I talked about our HUGE miracle that basically got Justin to Cleveland...and then later I asked those of you who have this devotional to go back and read Jesus Calling for June 18th?? Well...I just realized yesterday that June 18th has one more major significance to us. That is the day that Justin and I started dating. Yup. Its the truth. How special is that date? It is one we will truly NEVER forget.
I am over to moon excited to update you all tomorrow with some very big news.
Please stop and pray right now for Justin's pain. They removed a 3 inch x 3 inch piece of muscle from his leg and it hurts...BAD. He is ready to come home and be with his family. He needs to sleep in our bed and get sticky high fives from our boys. He will either need to be issued crutches or a wheelchair for a little while and will still continue to require the cane after that.
So...we are still sad that he is coming home without all the answers we had hoped for...but we know they are coming.
Now he can wait for the answers in the comfort of his own home and then head back up there in a few weeks for a new treatment plan.
Can't wait for tomorrows update!!
love you all!!