Wednesday, October 26, 2011

macs are so cooty-licious

what a day.
i cant catch my breath.
i started the day yesterday with a trip to see my dr. because i was feeling SO yuck. thankfully he is aware of justins situation (because he is justins dr too) and treated me aggressively. i was super careful to not breath around justin and even though i felt like poo i disinfected our room and bathroom.....but unfortunately i was too cooty-licious :(
justin had a scheduled pulmonology appointment today with dr. N. he was immediately concerned with justins breathing and realized that he had a fever. he sent justin straight over for an xray and told him to be prepared to be admitted. he still has pending blood work, but praise jesus he got to come home! he has a steroid induced uti and stinky bronchitis. he is already on 3 antibiotics and is now on another and also an inhaler. it is getting tricky to find medications that he can take for these little bugs that do not interfere with the BIG medications he is on. dr. N wants to keep a close eye on this and will see him again friday.
just as i was getting REALLY bummed. like major bummed. i was reminded of God's precious grace. it was in His perfect timing that justin already had that appointment scheduled for today. it was more than a blessing that the chicken noodle soup fairy stopped by yesterday, the corn dog fairy came by this afternoon and the paleo lasagna fairy came by tonight. i am feeling a LOT better and was able to focus on justin this afternoon. i am still trying to get a handle on our upcoming schedule. he will need to have bloodwork done every week to monitor the prograf. it is a very dangerous drug and has to be watched closely. he will see an oncologist monday to discuss his infusion plan. God gave us another little golden nugget the other day when we realized that we will NOT have to travel to canada for his other medication! one of my very dear friends is married to a magical medicine maker (just kidding...he is a for real legit pharmacy guy) and he will be able to help justin out with that.
in our little world there is lots of yuck...but there is not so much time to feel discouraged. The Lord fills our time with greatness and blessings and answered prayers and friendships and cute little boys.
We sit around sometimes trying to figure it all out. Why is this happening? Why can't we catch a break? Why can't we have just a regular boring life? Even just a normal day?
It isnt our job to figure it out. In Job 38 God speaks to him and asks where were you when I created the foundations of the earth. And Job shuts right on up. Because where we when the Lord created the oceans and clouds and mountains and snow? Job declared he was speechless and in awe...and so are we. Job was shown so clearly the existence of God and I feel so excited that we have too. God is constantly showing himself to us through various pieces of our day. Are we listening? Are we busy talking or planning or worrying? Or are we stopping to make time to listen to his whispers? Are we rushing around busy and never sitting still....or are we stopping to see His great works all around us?
We sure do not have it all figured out. We struggle and we sin and we have crummy stinky days. But...God is still waiting there for us at the end of those days. Holding an umbrella up over our rainy day and pointing to the beautiful rainbow in the distance.

Tuesday, October 25, 2011

for the prayin peeps

A very close friend of ours who knows our hearts helped us come up with this little prayer request page. Many times people ask us how they SPECIFICALLY can be praying for us. Honestly our needs change from day to day and even moment to moment. We have chosen to live this journey out on the front lines and hope that others can be encouraged by our transparency and never ceasing faith.
There are people far and wide who are keeping up with the mcelhannons and crying out to our Father for us. We have friends standing in the gap on those days when we are just out of words. We are surrounded by such well intentioned people and we recognize that God has opened doors and closed doors for us recently and we could not be more grateful.
So if you are wondering how to pray for us in general...please refer back to this page :)

Many people over the months have asked how they can be praying for us, and we have done our best to communicate openly. Quite honestly we have gone through this trial very publically, which has had moments that are trying, but also moments that have absolutely overwhelmed us with God’s love, grace, mercy, and community. We thought it would be helpful to put together a short general overview of some ways that you can continue to pray alongside us as we continue to seek God’s face, and desire His hand of healing, restoration and redemption.
1) Pray for our hearts to seek God above everything else, and to grow in a love for Him (even more than our desire for healing).
2) Pray for God to heal Justin’s body cell by cell. Pray for God to work from Justin’s head all the way to his toes.
3) Pray for relationships in the house to grow and flourish even through the hard times. Pray for our marriage and for each precious second with each of our boys.
4) Pray for wisdom of those that continue to seek answers medically. We know that God can use any means to heal Justin and we attribute everything that has given us another breath all to Him!
5) Pray for wisdom for our family to know what to do each step of the way (Prov.3:5-6)
6) Pray for great memories to be made and to take advantage of every moment we have. Whether there is sickness or not, we do not want to waste a single moment God has given us.
7) Pray for rest. As much as we are going going going, there will be times that we must simply rest. Not just the physical, because we need to do that, but our rest in the One who created all this and can do whatever He wants, at any time He wants. And so we trust and rest in God.

Primarily, we desire our prayers to be rooted in the understanding of God’s supremacy in all things, and pray as Jesus taught us to in Matthew 6. Following that we offer our requests in faith knowing that God hears and redeems (Romans 8:18-30), and we trust that He will act according to His will.
In Matthew 21 and Mark 11, Jesus tells the disciples that if they “have faith and do not doubt, you will not only do what has been done to the fig tree, but even if you say to this mountain, ‘Be taken up and thrown into the sea,’ it will happen. And whatever you ask in prayer, you will receive, if you have faith”. We have great faith in who God is and what He alone can do. As we read this passage, we understand that the faith Jesus is talking about is not a faith just in faith, a strong desire, or even a belief that something miraculous will happen (that is simply a strong hope in a change of circumstance). The faith Jesus is talking about is the trust in God’s kingdom, with King Jesus ruling and reigning. This is a faith in the one who holds the circumstance and trusting that He knows everything that takes place in His kingdom and can change the outcomes of anything that takes place because He owns it all! We know that this side of heaven we will experience some of the effects of a broken world. Some of those effects King Jesus will heal and make new immediately. Some of those effects will not face full healing until King Jesus returns (and we LONG for Rev. 19:11-20), or until we join him in heaven. Regardless of which healing it is, we offer our prayers in full faith knowing it is not our (nor your) faith, in and of itself, which heals us, but rather it is the Spirit who is renewing, restoring and redeeming by the command of Almighty God. Our prayer of faith is that Jesus will use this temporary vessel in this mist of a life for his ultimate glory, which he will do because he has already redeemed and brought so much restoration to our family.
So as you pray beside us please join us with this understanding. We are not giving up, we will continue to fight, and the Lord will continue to work, and we worship and praise King Jesus for the great work he has done, is doing and will do!


Wednesday, October 19, 2011

there is a plan stan

Justin is currently in Cleveland. He had some tests yesterday and met with his team of doctors today. Get ready for some information! WE HAVE A PLAN!! Praise our Father for his always perfect timing and his strength during the time we have been waiting.
The infection in Justins lungs is minimal enough to now start new treatment. One of the biggest concerns for his lungs was that the doctors were not able to tell if it was the scleroderma or the infection that was causing so much of the haziness in his lungs. Hallelujah that is was INFECTION! Because HELLO that is treatable and scleroderma is not. He still has quite a bit of scarring in the lungs...but the doctor was very pleased that it had NOT progressed. Ready for the plan? Well here it is:
He will do monthly IVIG infusions. This is an in patient (meaning he will need to be admitted for treatment each month) procedure that replaces antibodies and will help neutralize his immune system. He will need to do this forever.
He has now been cleared for the Prograf. We have been talking about this one for awhile now. This is the organ anti rejection medication that will help his body from being so mean to itself. It is an immunosupressant so we need to remain cautious and on guard with his health.
This combination of medications will hopefully allow the doctors to begin weaning him off this high steroid doses faster. The side effects are getting the best of weaning off will be a huge help. There is concern with his bone density and several GI procedures coming up. He has been on osteoporosis medication since day one of all we are going to be exploring options with something that will be more helpful. He will possibly have a stint placed in his stomach to help out with all the esophageal mumbo jumbo and he has some other scope type things to do as well.
He needs a medication that is only available in Canada. His Rheumatologist STRONGLY suggests that he get on this medication right away. He has written him a prescription and the rest is up to us. So...maybe we are heading to Canada! Yikes! Is this really our life?? Yup.
He will continue chemo treatments every six months. So he will be up for his next treatment in December. Can you believe that this whole story has only taken place in 4 months? Unimaginable.
He will also need to return to Cleveland in December so the doctors can monitor the prograf.
I think I remembered everything. What a DAY! Whew. I am pooped and I wasnt even there!
This is the first non-discouraging news we have had in months. I cant really say its super encouraging...I mean thats a lot of business for my cute 28 year old husband to have going on in his body BUT the bottom line is the Lord is present and we are thankful.
Please pray that he can come home soon. His flight has been pushed back twice now due to weather.
Thank you to our prayer warriors who have stood solidly by our side. Thank you for those who are there right we need them and for those who wait in the wings praying consistently for us. I have been blessed with the best friends a girl could ever ask for. I feel like I should pinch did I get so lucky?

Sunday, October 9, 2011

my date with jesus

Friday we were given the opportunity to have a whole 24 hours together. No work...quiet time without with kids....etc. Some sweet friends got us a night at a beautiful hotel down on the river walk and some other friends got us a gift card for a super yummy dinner. The plan was that we would spend the day together Friday in Boerne just relaxing, then we would take the boys to their school festival (huge deal because justin is never able to attend these types of things), then we would head to the restaurant for our romantic dinner and then to our even more romantic hotel....we were going to wake up saturday morning and just spend time together on the river walk (honey moon style) until we headed to church for side by side.

so thursday i said (out loud) "i am going to go into this weekend with NO expectations"...
I really thought I would be OK with whatever curveball came our way because I said "NO expectations" you know...i was thinking if justin was tired we would just relax more or if he started having pain we would just sit down or if he wanted to watch tv in the hotel room then that would all be fine.
I was so proud of myself for preparing myself for ANY situation. I was patting myself on the back in advance for being such a sweet and supportive wife.
HA to me.
A few hours after we started our sweet date day on Friday...Justin got really sick. Like REALLY sick. Long story short...we spent the afternoon in the emergency room. I took the boys to their little festival by myself (well not totally by myself...our sweet katelyn joined us)...while justin got checked in and then I met him back there. After four hours of getting him back to "normal" we were able to leave. I was so crushed. My heart felt so broken about our day. This was NOT what we had planned. This was not how it was supposed to happen. I was so disappointed as we finally headed out to the hotel after 8pm. The next morning I woke up and decided that we could surely make the best of the rest of this. We had until 2:30pm to just hang out and be together. But...Justin slept until 1. I found myself getting angry as I sat in the dark hotel room alone in the quiet.
BUT...then I went outside and gave the Lord some time that he had so thoughtfully planned right out for me. I was not doing a good job at all. I had LOTS of expectations of this little 24 hour getaway. Lots. I was expecting Justin to fill this time up and make it perfect for us. I was depending on him to make me happy. I needed him to be awake and up and walking and talking for my day to be good. How opposite of right could i go?? I was not depending on God one tiny little bit.
How humbling it was for me to sit there and say "ok god...i was trusting in you to make this time be BLESSED and good....oh i wasnt"....sorry God. I was sitting there sad and crying and looking at my peacefully resting husband and thinking how badly i wanted a normal day with him. an easy breezy carefree day with him. i was single handedly ruining this precious quiet time that the Lord had gifted me with...because I was too busy thinking about what it COULD have been.
What a GREAT BIG GIANT FAT blessing that Justin was ASLEEP!!! Hello!!! HALLELUJAH! This man is exhausted and stays up for days at a time. What a burden it must be for him to carry the weight of my happiness on his shoulders? Yuck. How very selfish of me. The Lord is begging for those burdens and I rudely want them all to myself. I thought I had that all figured out. I thought I was waking up each day and putting my sadness at His feet and walking around with my head held high...but I have only been doing that half heartedly. It is truly a GREAT challenge to do that WHOLE heartedly. I do not think I will ever have that totally figured out...but I sure am going to give it my all.
If I could trust in Him more....and give Him more...and seek Him more...than surely life would be better right? No...because that is not His promise to us. We dont get a gold star for each time we submit. We dont get an extra jewel on our crown for each time we pray. We simply get his love and THAT should be enough. Think about how much you love your children and spouse...and multiply that by a gazillion. THAT is how much our Father loves us. No matter what. What can we do to be more deserving of that? How can we honor that gift?
I thought I had it all figured out. I thought I was just good to go in that department.
I am so excited for this new opportunity to TRUST. And SUBMIT. And LOVE in the way we were born to love. I have a new picture of what "expectations" look like. I have a renewed spirit living in me today because God gave me an opportunity to seek him in the quiet and hear a message he so desperately wanted me to hear. Thank you Lord for your great love. No love is greater. Thanks for the reminder :)
The End.
PS: pray for justins breathing...glucose...prescriptions...and sleep.

Sunday, October 2, 2011

are you still praying?

here is what has been happening around here:

1. i got to go on my first round top trip with my friend mandy! we had a great time talking and talking and talking and we even made some time for shopping :) we both found some great stuff!
2. bryce turned 6! more on that later.
3. justin saw a local pulmonologist. his breathing test results were not favorable, but justin was pleased with the doctors honesty and interest in his case. this new doctor feels very confident that the scarring in his lungs is being caused more by the scleroderma than the fungus. this is not good news.
4. bryce did GREAT in his bike rodeo! the babies had a great time cheering on him and McCoy! the Aue Gator was even there which Brody thought was AWESOME.
5. Our renters moved out of our Houston house. :(
6. pop pop is here!!! bryce asked to go camping for his my dad came in to take him out to the ranch! i stayed over at the river house with the babies and some friends....and bryce had a blast!
7. justin will see a new dr. tuesday and leaves for cleveland in 15 days. he is still throwing up most nights and still experiencing negative side effects from the medication. he has tried to lessen his dosage of the steroids and the leg pain has come back.
8. brody LOVES school. he loves his ppcd class so so so much and loves coming to preschool a two days a week also. his speech has improved so much in just a few short weeks. i am so proud of him. he thinks he is a big fancy boy he has been getting out of his crib :( bummer.
9. we are still trucking along on the makers diet! we are on day 27 and feeling great! justin has found some things on the diet that he never would have eaten before...he is now learning what he can and cannot eat and at what parts of the day he can eat. he cannot eat past 5pm and has to be very careful on what he chooses for the last meal of the day.
10. thanks to some SERIOUSLY incredible people we are going to get to have a date night friday. we have realized that i will not be able to join justin in cleveland and we desperately need some time together. most of our time is spent talking about doctors appointments, insurance, medical bills and his current symptoms. we are feeling super weary.
we are leaning on God so hard right now and He is holding us up. He has provided us with a support system that just cannot be beat. i have begged for restoration and clarity with many things recently and as God is faithful and He provides.
please never stop praying for us.