Justin had his first appointment today at noon with the pulmonology/scleroderma specialist. We liked him a lot. He had received all Justin's information...but he asked us to tell his story in our own words. As we were telling him...he stopped us so he could go to his office and get a picture of his family. He too has 3 little boys...under the age of 6...one of them has downs. He said..."wow, God definitely brought us together!"
Thursday, June 30, 2011
Posted by misty mac at 3:10 PM
Wednesday, June 29, 2011
We made it! We had a great flight. It went by extremely fast...we felt everyones prayers for sure. We so appreciated everyones texts as we were taking off!! We watched a few episodes of Modern Family on the way. Hilarious!
Posted by misty mac at 6:40 PM
Sunday, June 26, 2011
Today is my beautiful mommy's birthday. I wish she was here to celebrate. I wish she was here so we could take her to Joe's Crab Shack and so we could get her some cheesecake and so my kids could hug her neck! I also just wish she was here. Period. I kinda need her right now :(
Posted by misty mac at 9:34 PM
Saturday, June 25, 2011
Posted by misty mac at 11:53 AM
Friday, June 24, 2011
today was a good/not awesome day. the good parts included taking bryce and addie to see cars 2 and having lunch with a friend while justin napped...watching the babies read to justin...finally getting a work out in...getting my fixed car back...sending bryce to swim with his tball friends...getting the MOST AMAZING pictures EVER (i canNOT wait to share them with ya'll)...taking care of my number one man...getting our travel itinerary sent from the most generous family in Boerne...and getting some one on one time with Justin in the afternoon while Katelyn was here.
Posted by misty mac at 8:04 PM
Thursday, June 23, 2011
notice the new fabulous header? thank you chantal bellamy!! i am going to leave that up there for a little while...each person that is visiting this blog is praying for us and thinking of us and loving on us in one way or another...so for now...i want you to be thanked each time you come.
Posted by misty mac at 9:33 PM
Before a critical time of Esters life she prayed and fasted. At this time, she called for others to fast with her. I am not Esther...and I am not going to see a king...BUT I am a daughter to The King and I humbly stand before you all...weary and desperate...and ask you to join in prayer for healing for my precious husband.
Fasting can be done individually, like we have read that Jesus, Moses and Daniel did; a whole church can be called to fast (Acts 14:23), or a city (Jeremiah 36:9; Jonah 3:5). In times of strife, an army (Judges 20:26) or a whole nation can be called on to fast (2nd Chronicles 20:3). However, unless we are called to collectively fast for a specific purpose, we should fast and pray in secret and tell no one except the Lord Himself. ‘And whenever you are fasting do not look gloomy like the hypocrites do, for they put on a dismal countenance so that their fasting may be seen by men. Truly I say to you, they have their reward in full already. But when you fast, perfume your head and wash your face. So that your fasting may not be noticed by men but by your Father, Who sees you in secret; and your Father Who sees you in secret, will reward you in the open’ (Matthew 6:16 to 18).
Fasting can be used to ask God’s help. ‘So we fasted and besought our God for this, and He heard our entreaty’ (Ezra 8:23).
Fasting is serious business to God and we must not take it lightly. ‘Sanctify a fast, call a solemn assembly, gather the elders ... and cry to the Lord’. ‘Set apart a fast and call a solemn assembly’ (Joel 1:14; 2:15).
Fasting can be used to increase the power of God in our life, so we can serve the Lord more effectively just as Jesus did. He was led out, or driven out by the Holy Spirit into the wilderness (Matthew 4:1; Mark 1:12) and came out of the desert full of the power of the Holy Spirit (Luke 4:14). Jesus did not perform one miracle until after He was baptised in water and had fasted for forty days.
- Fasting was an expected discipline in both the Old and New Testament eras. For example, Moses fasted at least two recorded forty-day periods. Jesus fasted 40 days and reminded His followers to fast, "when you fast," not if you fast.
- Fasting and prayer can restore the loss of the "first love" for your Lord and result in a more intimate relationship with Christ.
- Fasting is a biblical way to truly humble yourself in the sight of God (Psalm 35:13; Ezra 8:21). King David said, "I humble myself through fasting."
- Fasting enables the Holy Spirit to reveal your true spiritual condition, resulting in brokenness, repentance, and a transformed life.
- The Holy Spirit will quicken the Word of God in your heart and His truth will become more meaningful to you!
- Fasting can transform your prayer life into a richer and more personal experience.
- Fasting can result in a dynamic personal revival in your own life-and make you a channel of revival to others.
- Fasting and prayer are the only disciplines that fulfill the requirements of II Chronicles 7:14:
Posted by misty mac at 7:59 PM
Tuesday, June 21, 2011
my brain is continuously thinking of all the people i am thankful for right now.
i am thankful for the people that are feeding us! YUMMY! the steroids make justin STARVING and yummy dinner just keeps on showing up! thank you so much for those coordinating that. also, an extra shout out to Justin Hobbs for also passing on his blessing of meals to us.
Thank you to my sweet precious friend that made me the most perfect and snuggly blanket to take to Cleveland!
Thank you to an amazing photographer. A special family that is financially funding this journey. The other amazing families who are contributing to us financially during this crazy time....the two awesome women who set up The McElhannon Fund at Wells Fargo. The friends who stop by with goodies or just to give the boys a high five. The friends who are coordinating things for us and the ones who are texting us really funny hilarious things. There are people praying for us that we do not know. There are people who want to help us along this journey that we dont know. The offers to watch our kids are OVERFLOWING. Either I have some REALLY cute kids...or these people are just AWESOME. I bet its a little of both. God is so present in this situation.
My mom always told me that it was appropriate to write a thank you note for EVERYTHING. And so...I have always done that. I have just really been broken hearted that I have not been able to do that. I have been told by a few people that if I attempted to write a thank you note that they would break my fingers. That would be a total bummer. It is so hard to let go of that...because I want to thank each person. Justin wants to thank each person. I do not think there is enough thank you notes in the world.
Posted by misty mac at 8:51 PM
Ok everyone...We have a date for Cleveland. It is not really when I wanted to to be. But...it is what it is.
We will leave NEXT Wednesday the 29th. He has 3 appointments set with 3 different specialists on the 30th. It was a pretty HUGE ordeal to coordinate with 3 top specialists offices to find ONE day for them to see him. At first they told us end of July. NOPE. Then they told us that we could go ahead and come if we thought it was an emergency...but we couldn't be guaranteed to see these specific doctors. These 3 specific drs are the top in their specialties. One for scleroderma, one for polymyositis and a pulmonologist for the fibrosis they found. I am disappointed that we are not going sooner...but can see that God's perfect timing made these unavailable appointments happen.
In the meantime we need to continue praying that the pain patch will work. He said today that he feels like it has taken some of the soreness away. Each day he dreads waking up and feeling what will hurt. His elbows, legs, arms, face and backside always hurt. Something new is swollen each day too. Today he woke up and the bottom of his feet are so extremely tender. Can you imagine? I just cannot. I just want it to all go away. An amazing friend from our Sunday School class offered to take our family portraits today. That sounded HORRIBLE to Justin...but he knows that it is important and something that we needed to do. He was such a good sport. I could tell he felt awful...but she made it super quick and kept him off his feet as much as possible. And did I mention...she drove four hours to do this for us? We are so blessed and thankful. The owner of Toyota of Boerne so kindly offered up his gorgeous home for us to do the shoot. It was VERY last minute (like we may have just figured this all out yesterday), but it was perfect and cool and comfortable to Justin (and um...lots prettier than our house).
My precious aunts and dad are on standby and ready to come watch this wild pack of boys we have. I know they will be in great hands and I know there are lots of others that will be waiting in the wings...ready to help when needed!!
For now, the doctors office seemed under the impression that Justin would not be there long. He would come in as an outpatient...see the specialists and get a new plan. We have all his medical records, most recent bloodwork, biopsy results and on and on...and will take all of that with us on a disk.
Pray that the chemo and ivig will continue to attack the yucky cells in his body and leave the good ones alone.
Justin is going to get better in Cleveland. I am pretty excited about telling that story when it happens :)
Posted by misty mac at 10:36 AM
Monday, June 20, 2011
We heard from Cleveland Clinic today!! We will not have a firm appointment date/time until tomorrow morning...but we KNOW we are going! It was a hectic day as we made and received calls and talked with insurance and waited and watched our phones. We heard from them twice today AND our insurance company is already working with them!
Clearly, God has a specific plan for us to go to Cleveland...so we are just going to trust His timing.
As Justins CK levels are continuously going up and his pain never decreases...we are hopeful to travel ASAP! We want to get going before he begins to feel worse. The most amazing family has our travel arrangements completely handled. Two other families have offered to help as well and will help us get the kids up there if we need to be there longer than just a few days. I am just once again...blown away. Justin and I prayed today that one day we would be able to help a family in such a tremendous way.
I picked up Justin's pain patch today...please pray that it will work!! It was VERY expensive...but God provided the money for that too.
Leaving the hospital yesterday was a nightmare. It took four hours to get discharged. He was so so ready to get home and be with his babies. Dr. F came in and said "I have thrown the kitchen sink at you and now its time to go home and wait for Cleveland to get you in"....The hospitalist, Dr. Anumula, asked that we please email him with updates on Justin's case. He said that he had no more options on how to treat Justin and would love to learn from his case.
He is a medical mystery. I am so sad that his body has to feel this pain and have this disease in it. I hate that my handsome husband had to have chemo running through his veins. I hate that he hurts. It breaks my heart every day. I dont understand why none of the treatments have worked.
There are going to be answers in Cleveland. I can't wait.
On a side note...I went to Target today to get Justin a new pillow and when the baby and I went to get back in the car...it wouldnt start. Toyota of Boerne totally came through and handled it and got me home...but I dont have my car and that just stinks. I am ready for a day where nothing happens. A boring day would be good.
Please pray for the kids during this crazy time. We are doing our best to keep them in their regular routine. They sure were happy to go to all be together yesterday and today...their little faces never stopped smiling!!
Thanks for keeping up with us and thanks for your prayers.
Hopefully I can update you tomorrow with our travel plans!!
Posted by misty mac at 6:19 PM
Saturday, June 18, 2011
The Message (MSG)
25-28 And then, as they stood with folded wings, there was a voice from above the dome over their heads. Above the dome there was something that looked like a throne, sky-blue like a sapphire, with a humanlike figure towering above the throne. From what I could see, from the waist up he looked like burnished bronze and from the waist down like a blazing fire. Brightness everywhere! The way a rainbow springs out of the sky on a rainy day—that's what it was like. It turned out to be the Glory of God!
Posted by misty mac at 3:19 PM
miracles are real.
ready to hear why?
friday was loooong. actually sunday, monday, tuesday, wednesday and thursday were long too.
but friday was like WAY long. it felt that we were just dragging through the trenches. lost a little. still being led by an incredible doctor...but reaching his max.
last night i left the hospital feeling sad and anxious. i knew that we still had options ahead...but they just didnt FEEL right.
i really didnt feel like talking to anyone.
i just wanted to come home and snuggle with my babies and go to bed.
i got a call from a friend of friend. let me just tell you that everybodys friend of a friend has something they want to tell us...so i wasnt super pumped about answering the phone. i almost didnt.
this sweet girl called to tell me how she had been healed at cleveland clinic...she told me her story of her specific disease and how they had tried everything here and finally she found the right treatment and answers within 3 days at cleveland clinic. she told me her family would help us get there and that God had made it VERY evident to me that she HAD to tell me about cleveland clinic.
i immediately felt overwhelmed. there was no way i could convince justin to go to cleveland clinic when his dr (that he trusts so much) had mentioned Houston.
i mentioned the call to justin...we prayed and went to sleep.
first thing this morning...dr f came in. they called me on speaker and...get ready...
dr. f had been on the phone ALL day trying to find the perfect place to send justin. he worked with the on staff rheumatologist at UTSA to research and make calls. they immediately ruled out anywhere in texas.
guess what he said...
"i have found the father of all doctors that wants to treat you...he is an expert in these diseases....he is at the CLEVELAND CLINIC"
that just happened.
SO FRIENDS....WE ARE GOING TO CLEVELAND!!!
we are not sure quite when...but it will be very soon. we are working on this through a weekend...so we may not have answers until monday or tuesday. however...this is GODS PLAN FOR SURE. so we are more confident than ever that HE will make it perfectly clear when it is time for us to go.
wow. can i get an amen on this one?
if you have never seen a miracle...well you have now.
we have never given up that the Lord would provide. He did.
one smaller miracle for the day is: it was really hard for me to think of a fathers day present for a person that is in the hospital. what do you get the best daddy in the world that love to exercise and play golf and do outdoor things...but he cant do any of those things right now?
i thought hard about what his most favorite thing is....and i realized that it is getting a haircut. he has VERY special treatment at Salon Infusion in Boerne. they love him. a LOT. so what happened you say?! they came all the way to his hospital with all his favorite products and gave him the haircut of his life!! i wanted to bless my sweet precious husband...and I did!!! i have never seen him smile like that. so THANK YOU to salon infusion. if you dont go there...maybe you should.
yesterday was rough for other reasons. his levels kept going up...they did today again too. he had to go under for his muscle biopsy yesterday. i have never felt so scared in all my life. we should hear about that this week.
i felt like i was out of body yesterday. just sad and scared.
we wil still start rituxan today. pray that he will have ZERO side affects and only the good effects. pray that this will make him feel better until we get to cleveland. please stop and pray over this trip now. God knows the details...we will let you know when they get sorted out.
Posted by misty mac at 7:43 AM
Friday, June 17, 2011
today when we spoke with the doctor we got lots of news.
ck levels back up. over 2,000 again.
NOT SUPPOSED TO HAPPEN.
he is concerned that none of the treatments have worked.
we are doing a muscle biopsy this afternoon. he wants to check out some other things.
dr. f said its time to bring on the big dogs. this is serious business.
he is contacting a dr in houston today.
(side note...justin cannot eat before the biopsy...those of you close to this situation know exactly how important food is to him right now....stop and pray that they do it SOON)
he will start a treatment called rituxan today.
this medication is $5,000 a treatment. He will take 2 treatments a month every 6 months.
STOP NOW. Pray that insurance will cover this. Pray that I am able to negotiate with them.
Pray that the portion they cover will be sufficient. I am confident that God's got that.
He will take that by IV...probably starting today.
the side effects are extreme. but...the dr said at this point...the risk is worth it.
the ivig is in his system and will hopefully start to kick in more over the next 12 days.
he will not get biopsy results for up to 10 days.
stop and pray that the results will be favorable.
pray that the dr in houston will be able to get him in quickly or will have some answers or...something.
i dont even know.
continue to pray for bryce, brody and braxton.
they have been extremely loved on and i have been able to spend some good time with them....but i miss them terribly. i wish they could have their normal life back. mommy taking care of them and daddy coming home to wrestle them and tickle them after work everyday.
justin is desperate for normalcy. he wants to go home. he REALLY wants to go to work.
when will this all end? when will have good news? when can we rest at home in peace with our precious babies?
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.
Father we cry out to you!! We glorify your plan for our life each day. We come before you God and pray for grace and understanding. Lord we beg for wisdom, discernment and peace. We pray for healing God...complete healing. Never leave our side Lord...we are leaning on you during this time. All the way. Help reassure us of your presence in our times of weakness. We have seen you at work God and we are amazed. Simply amazed. We command satan OUT of times of weariness. Lord we praise your name each day for the blessings....we thank you for the place we are right now...but Father we just dont understand. It is in your holy name that we pray.
Posted by misty mac at 5:47 AM
Thursday, June 16, 2011
yesterday was more pain. lots more pain.
something yucky started happening with his wrist before the ivig yesterday. it became red and swollen and tender.
this morning that same thing started happening to his thighs.
they finally came in and did an MRI...it just showed more muscle inflammation. that was extremely discouraging.
the reason that is so discouraging is because the medications he has been taking intravenously for 5 days are specifically for inflammation and pain....so they are not working one bit.
plan A, B, C and D have not worked...we are surely hoping for a good plan E tomorrow.
emotions are at an all time high right now. justin is not interested in people feeling sorry for him. encouragement and prayer and friendship are what is keeping him going...sympathy is frustrating him.
we are beyond exhausted and even more frustrated.
please pray for a good plan tomorrow.
we really are ready for some good news. like...REALLY ready.
he is still in horrible pain.
my sweet friends made a big basket of goodies for the nurses...hopefully this will bribe them to atleast do their jobs.
some other sweet friends had the boys make an awesome banner with little feet prints and a verse. i wish i had the energy to post pictures. we have had 30 different visitors...some crazy good food...and some serious prayers.
even with the yucky news....we are still able to see some amazing things happening. crazy amazing. god is at work.
fear not, for i have summoned you by name; you are MINE. when you pass through the waters. i will be with you. when you pass through the rivers, they will not sweep over you. when you walk through the fire, you will not be burned. the flames will not set you ablaze. for i am the lord your god...the holy spirit of israel.
Posted by misty mac at 7:13 PM
Wednesday, June 15, 2011
This morning Dr F told us what we already knew... Justin is not getting any better.
So... We started the blood antibody transfusion (ivig). It's pretty gross... But the Dr is confident this will help.
His pain has not minimized at all. His legs and arms are the worst. He is on tons of pain medication... Morphine, norco, something for nerve pain... Nothing helps :(
Can you imagine? It's extremely frustrating for him. The IV solumedrol was supposed to reduce the inflammation... But it didn't.
He still has a positive attitude and he still sees that God is at work... Although he is definitely having more and more moments of weakness.
He has been just as in awe as I have at the way our friends have rallied together to be the hands and feet of Jesus. We have had so many wonderful visitors from far and farther (I would say near and far... But NOTHING is near to us).
Our babies are good! Justin is thrilled that some great friends brought Brody up here to see him! He has now got to see all his boys... Which is such good medicine for him.
Braxton is pretending like nothing ever happened to his head... Doesn't bother him a bit!!
Thankfully, we have our precious sitter Katelyn at the house now... So all is good in the world!!
The IVIG will take 3 or 4 days... So we will be here.
We are tired. Exhausted. Burnt out on this place.
Current prayer request:
Justins pain to stop
He now has something terrible happening to his wrist. It's swollen and black and hurting badly.
Thank you all for loving us and sharing in this journey with us.
Posted by misty mac at 11:30 AM
Monday, June 13, 2011
today started with dr. f coming in at 6:45 am. he gave us a game plan...1000 mg of steroids today, tomorrow and wednesday. wednesday afternoon they will decide if they are going to do an IVIG....which is basically a blood antibody transfusion.
Posted by misty mac at 5:49 PM
Sunday, June 12, 2011
Posted by misty mac at 6:03 PM
Wednesday, June 8, 2011
People are praying. People are praying BIG TIME.
And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him.
- Hebrews 11:6
Posted by misty mac at 4:31 PM
Sunday, June 5, 2011
so with all the crazy/awful things going on with justins health right now...we decided whole-heartedly to make this weekend the BEST/most normal weekend we could possibly manage. it took a huge effort for justin (because he feel horrendous) to go with the flow...but he was such a trooper. it would have been much easier to sit around and be sad all weekend...but that is not how the mcelhannons roll.
Posted by misty mac at 7:31 PM
Thursday, June 2, 2011
here is the update
Posted by misty mac at 3:43 PM