Saturday, July 30, 2011

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, July 29, 2011

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.

Thursday, July 28, 2011

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.



Tuesday, July 26, 2011

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!!

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!!

Thursday, July 21, 2011

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!!


Tuesday, July 19, 2011

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

Monday, July 18, 2011

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.

Tuesday, July 12, 2011

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!

Saturday, July 9, 2011

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.




Friday, July 8, 2011

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!!

Thursday, July 7, 2011

I forget what day it is

We only have one computer charger..and Justin has it. So I am blogging from my phone. And that is hard :(
Anyway. I have enjoyed every second with my boys. It feels so good to be back with them!! I love them so much and I really needed their smelly hugs and kisses.
Today has been not so awesome in Cleveland. Justin has been waiting since 5am for his biopsy. (it's 4:30pm there right now)...I can only imagine what a bear he is right now... He has not had any food since last night.
So... Do you remember the "liver team" I talked about? Well they came back today with all his test results. Not good. Not good AT ALL. They changed his type of steroid because regular prednisone is not being helpful with the liver issues. They want to run a whole big fat bunch of more tests and eventually do a liver biopsy.
So... Where does that leave us?
Well... Nowhere. He is weeks a away from getting all this totally pieced together. He cannot just sit in Cleveland and wait for it all to pan out. He spoke with his doctors today and explained to them that he wants his family back together and that much more time in a hospital bed may make him lose his mind. The doctors agreed that he could go home and wait for these results... And continue testing under their supervision. They will need him to come back in a few weeks... But in the meantime... He REALLY needs some home time.
So basically he will be going home with very few answers... But lots if hope. We are very disappointed that the answers were not easier to find. Stubborn man!!! ;)
I will stay home and wait for him. The airline ticket that my sweet friend got me to go back will transfer to a ticket for him to come home!! We still don't know exactly when that will be... But we know it will be soon. We are praying that he can be home by Monday.
This is just all bittersweet. I just sit back in awe that Justin was able to get to the doctors that could figure it out. Just unfortunately figuring out someone like him is not an overnight thing!! How great is our God???
I am pretty sure you know how great the macs think He is!!!
Ok... I can't even see what I have written from my dumb phone. So hopefully it makes a tiny bit of sense.
Bottom line is... God brought Justin to Cleveland. Now He is bringing him home. Soon He will bring answers!

Wednesday, July 6, 2011

where two or more are gathered...i am there with them - matthew 18:20

Today was INSANITY! I got to the Cleveland airport this morning at 5am. They had ONE checkpoint open. ONE person to check tickets. ONE person to scan your luggage. Not a very friendly person either. So...me and the five people that were standing behind me...all missed our flights. I really lost it. I have had some cry fests over the past few weeks. But today was it. I had all I could handle and I just crumbled. On the airport floor. I know...gross.

So anyways...surprisingly someone was able to understand me through my sobs and they got me on a plane to Chicago within the hour and then I was here with my babies by 1pm.
I got here at nap time which was great because I got some time with just Bryce. We really needed that quiet time together!! Then my stinkies started to wake up. Braxton was so so so so SOOOOO excited. He kept squeezing my face and petting me and laughing. He said "mine mine mine" and hugged me so tight. It was the most delicious thing in the whole wide world. Then Brody woke up and gave me and kiss and a high five. He just kinda smiled at me like..oh good you are back where you are supposed to be and then acted like his regular precious self.
We had the best afternoon. I left my phone in my room and just focused every second of this day on my guys.
Chris got to into Cleveland great and was there before I even got home! The doctor came in and they have scheduled his biopsy! He will go into pre op tomorrow morning at 5am...but the surgery will not take place until after lunch. I just cannot even think about not being there with him when he wakes up. I know I am where I am supposed to be right now...please join me in praying for peace about that.
FOR THE KINGDOM OF GOD IS NOT JUST TALK...IT IS POWER!!
1 Corinthians 4:20
God's people have been called from far and wide to pray for our family and lift up Justin...daily. It is not just talk. Those prayers are so so powerful. We feel it! Even when things dont seem to be going OUR way. We rest in faith that they are going HIS way.
We know that this biopsy (PS: plastics has to come in and do it...because its going to be a pretty big hunk) is going to provide the answers. At this point...it is SO evident that God is in control...that worrying just seems like a waste. So I am not going to do it.
Well. I am going to REALLY pray about that anyway :)

PS: I know I have said one million times that I have the best friends in the whole wide world...BUT now I can show you a lot of them...and just how awesome they are!!

They tricked me!! Big time!!!

I was so so so surprised and even more blessed by this precious prayer time with my sisters in christ. I needed a LOT of hugs this past week...and I got caught up on them all today!



Tuesday, July 5, 2011

tuesday

Today Justin started his morning having a full body PET scan. He had to have this creepy radioactive stuff go in his IV and he had to lay still for a really long time. Justin is HORRIBLE at sitting still. He is a lot like Bryce :)

He got to come upstairs for a quick lunch and has been doing his chemo all afternoon. It makes him feel pretty yuck. Very flu like and super sweaty.

All morning I prayed that he would be able to get his EMG done ASAP. I prayed and prayed and prayed. The doctors were having some issues getting it scheduled and the nurse told him the soonest he could get in would be Friday. We did not stop praying that God would show us His perfect timing for this EMG (btw...the EMG is this scary thing that pokes him all over his muscles).

A NEW doctor came in and decided that an EMG was no longer necessary. NEAT! He said that an MRI would be good enough to determine what part of the leg to take another biopsy from.
So...after his chemo...he will head down for ANOTHER MRI.
Please pray that these results will come back ASAP and the biopsy will be scheduled so so quickly!

I love the way God shows His love to us. It is never just quite what we were expecting...its ALWAYS better!!

This new doctor that came in today was WONDERFUL. He had a whole new perspective on everything. He was able to explain so much to us and had lots of ideas on why everything was so puzzling. No answers...but lots of ideas on how he wants to get to the bottom of it. We are so excited to see what he will say next!

The liver consultation team came in and decided that he needed to come off the methotrexate. It was causing more damage to his liver than doing any good for his autoimmune issues. He is very excited to no longer have to take that! The side effects are AWFUL.

I AM GOING TO SEE MY KIDS TOMORROW!!! I can hardly wait to see all of their stinky faces!!! I am so so so going to miss sitting next to my man...but I know he will be in good company with his best friend Chris who will be coming to sit by his side while I am gone!! I will be back with him Friday around lunch time.

Today we were featured on a really neat BLOG!
Check it out when you have some time! We are blessed to be included in this awesome ministry! We are also excited for a whole new group of prayer warriors to be lifting up Justin.

Thank you all for your endless support and prayers for our little family :)

Monday, July 4, 2011

happy 4th of july!!

Today was eventful. Justin started his morning (hungry) at 7am with occupational therapy and physical therapy. They said it was now necessary for him to have a cane. He thinks that is cool. Me...well whatever :)

Seven doctors then came in at the same time. They said that they are getting false positives on some tests and nothing is piecing together properly. He will still do his chemo tomorrow...then the EMG ....then the biopsy etc. BUT in the meantime a conference is now scheduled. ALL the rheumatologists on staff at Cleveland Clinic will meet on Friday and discuss Justin. This is HUGE! Bummer part is that he will for sure be here on Friday (unless...some random test result gives them what they are looking for)...but the AWESOME part is that Justin will be looked at by each and every specialist they have here! How amazing is our God!!??
WE HAD A VISITOR TODAY!!! Yes a real live person was here!! Our super awesome friend, Chantel, has a dear friend that lives about 3 hours away. She drove all the way over to visit with us today. She prayed with us and even took me to the store!! It was so nice to have someone in our room that was not a nurse or doctor.
The kids had a GREAT day. They started out their morning with a bass pro tour. Then Bryce got to hang with the fickeys all afternoon and the babies got to hang at the stone creek pool with my aunts (thanks mandy and logan for getting them in!).
Justin was allowed to leave the floor (with his new fancy cane) and go eat dinner at our hotel...and then...watch fireworks from the hospital rooftop!!! It was so beautiful...there were fireworks coming from every direction. Over downtown...over lake erie...over the indians stadium...it was awesome. And did I mention its like 72 degrees???
Tomorrow is supposed to be the BIG DAY. All the results are supposed to start rolling in. Justin will have his chemo tomorrow. This is AWFUL. So...put your praying pants on.
New doctors will come to see him...the holiday weekend is OVER. So lets get this show on the road!! God has big huge gigantic things in store for us and we are just bursting at the seams excited to see what it is all about!!

Some other pretty awesome things have happened. I know these families dont NEED to be thanked...BUT I just have to give a shout out to my aunts for holding down the fort with my sweet little babies. To the Amerman family for getting my daddy home, to the House family for getting me to my babies later this week, to the Fickeys for hanging out with crazy Bryce all night, to the Minahan/Srps for EVERYTHING and to all the other precious people that have done such amazing things for us. Never ever ever will I feel like I have thanked everyone enough!!!
PS: Joanie and Jerry...Bryce wants a pet goat now. Thanks a lot lol!!


Brody at the pool!
Bryce, Pretty Addie and Big Brody at the pool today!
Bryce fits right in with you crazy Fickeys :)
oh my
is that a mustache mr mcelhannon??
thanks for this fun pic linda!!
and this is the grand finale!! this is the view we had when we got up to the rooftop tonight!! behind the buildings is the lake! every piece of the sky was lit up with glitter tonight!!

five days on the phone

So here are the last 5 days in pictures from my phone. Sweet friends have texted and emailed pics of the kids...and I have snapped a few of what we are doing here.

Here is our precious patient!
Isaiah 35:4
Here is Bryce at the river house! There is a sprinkler under the swing! FUN!
The boys are at the river playing in what looks like a dirt pile. How fun is that??
Linda took Bryce to Landons party!!
...and he got to spend some time with Mr. Ed!!!
Oh these two. Could they be more precious together??
A letter man. Because...why would I not take a picture of this? It is in the lobby.
While I was waiting for Justin to get his 17th CT scan/ultrasound...I was asked to move out of the way...by the traveling trash can. Seriously. There was no person in sight. I also took a video...because...hello!!!! Its a talking moving by itself trash can!
This is PART of the long sad hallway I walk "home" down each night.
This is something that makes me happy.
Little tiny things usually ALWAYS make me happy...
so a little pepper and a little salt makes me smile for sure.
Coffee is good right now. Thank you sweet Sam for the coffee cozy. I am just so happy there is a starbucks downstairs...even if the barista feels sorry for me and gives me free coffee a lot.
This is from the day we got here. This is how they found his nail bed capillary abnormality.
Looks to me like a fancy manicure ;)
This is a view from the doctors office window on Thursday.
We are in one of those buildings...
This is where we went the first night we were here. Little Italy in Cleveland!
This is the view from our hotel window!
I keep the shades closed though because I only go there to sleep.
Here are my little pumpkin pie babies swimming out in the backyard with my aunts!!
Lucky Bryce got to spend Sunday with Jerry and Joanie at the Wildlife Safari!!
Here is the baby goat that he caught! Wish we could keep it :)
A very important cheesy lunch


A group of 7 doctors are in now to talk about Justin. I will give you all the scoop on that tonight. In the meantime...Justin and I have been praying about another sweet couple. Sure puts things into perspective. Take a look if you have some time...but get ready to cry.

Sunday, July 3, 2011

sunday

Do you remember your first big roller coaster ride when you were little? Not the dinky one that just kinda goes in a fun little up and down pattern. The BIG one...with the loops and drops and tummy flipping scary fun. How you waited anxiously in line...probably with your maybe a little older/cooler friend that had already ridden this one a gazillion times?

We are on a ride right now for sure. We held hands as we took off for Cleveland...looking at each other (maybe a little excited...but mostly terrified to the core) like is this for real? Are we doing this? Then as each up and down and loop and drop has happened over the 4 days...we have clung to each other...not wanting to look scared...not wanting to act like we are not cool enough to endure this. When the ride was over when you were younger...you were so relieved. It was so fun/awful! Your stomach is still in knots and upside down/inside out....but you DID IT! And your older cooler friend is proud of you.
Right now...God is our older cooler friend. He wants us on this ride. He wants us to see the world from the tippy top of the highest ride in the whole park. He wants us to hold his hand so tightly when we come crashing down from the BIG drop. He wants us to call out his name when we go for the loop. He wants us to know that he is holding on to us so tightly...through every second of this. We HAVE to trust Him and know that his almighty plan is so great. We won't know what all is in store until it is over. But it will end. Someday. We will look back and be thankful that he chose this path for us. We will look back and high five each other on conquering the CRAZY ride we were just brought to. We cant lie and say that it would be way more neat to be standing in line with a cotton candy for the merry go round. We are apprehensive and scared...but still trusting that its gonna be GOOD!
I am so grateful to go on this ride with my sweet Justin. God created women to stand close beside their husbands and lift them up at all times. I have had the opportunity to stand behind him and watch him lead me. Justin is my ultimate hero...I will never tire of praising him. God created him so perfectly. Cute and funny is a major bonus too. Thanks God...You have so always got my back :)

Today was just more tests. More blood work this morning. No test results back on anything yet...from yesterday or today. They were able to rule out cancer in the stomach (and south of that!). There is some liver concern still. They have called in what they refer to as the "liver consultation team"...they did an hour and forty five minute ultrasound on that this afternoon. They came in after lunch and told him he couldnt eat anymore today (SHOOT!!!)...that always makes me scared. BUT just three (long) hours later they came in and got him for the testing. When he got down there they told him "oh, ha! you totally could have eaten." Great.
Please be in prayer for those results.

Justins phone screen shattered today...along with a little piece of his heart ;)
So...that was a bummer.

Speaking of phones...I know some of you are already reading Jesus Calling and I know several of you have just purchased it. So some neato news I just found out today is that there is an iphone app for the book! There is ALSO a childrens version! Joanie and Jerry got this for Bryce when he was Baptized. SO...you can do the same devotional as your kids!! It is so amazing. Did anyone read June 30th? That was the day we got here. God is good.

Please pray for Justin's heart. He is dealing with some frustrations that are just so hard. I want to fix it...but I just can't. He is such a trooper emotionally. We have had time to sit back and look at the perfect little family we have. God pieced the 5 of us together and we thank Him and praise Him for showing us His love through our children and our marriage.

I am hanging in there. Sadder than ever still. Emotionally pretty yuck...but I am still finding time to stay in the word...which is of course the best medicine around. I went down to the gym today again and did some good cardio. I took a nap and had a good cry as I thought about how badly I want to hug and kiss my kids. I never thought I would ever have to be away from this like this. We are working out a plan on how I will see them. Justin does not want them in the hospital room..it is yucky and our neighbor is sick and yucky. I may get to run home and see them for a day or two and then come right back. We are working out the details, but will not make any decisions until Tuesday morning when we start getting more answers and figure out when he will do his chemo and biopsy. I am trusting Gods timing on the perfect way that it will fall into place. I am just such a planner and this is so hard for me.

That is all for now. We hope everyone has a safe and happy 4th of July.