Merry Christmas and Happy New Year!

   
    I think I am already suffering a bit of post Christmas let down... I am
already dreading taking down the tree and putting away decorations.

    Christmas seemed to come so quickly this year. I was sitting next to 
my 5 year old niece Christmas night and she turned to me and said 'I 
don't want Christmas to be over' and I had to  say 'Me too!'

    This year it was just Cody, Lucas, and I who made the trip to the NIH.
And we STILL don't have any results from the exome sequencing! If it 
seems like I am whining ... well I am I guess. 

    Cody is again having issues again with hematuria and we were not 
able to be seen by Urology while there. Which means trying to get him in somewhere here before he heads back to school on the 10th while I am 
off work.  As I was talking to the receptionist this morning she said you 
know they will probably want a CT scan or something? Argh! well he has 
been trying to get this taken care of since the 18th... so we are settling 
on an appointment the afternoon of the 7th after Luke's infusion... and 
maybe some testing when he comes home for Spring Break and if it 
needs to be done before then well I guess we'll figure it out somehow.
It's a bit more unnerving this time because it will be bright red after any
physical activity and he has protein leaking as well.

    Hannah danced in the Nutcracker and was fabulous! She just pushes
through and amazes me.

   My senior nursing student made the Deans list for the 7th semester 
in a row! Woot Woot! She is just the greatest girl (yes I am totally 
biased)! 
    
   Lucas had his first infusion of Orencia on the 22nd at Hershey and we
quickly came home so to meet the home health nurse for Hannah's at 
the house. Hannah had a bit of an odd reaction this time ~ at least
we are guessing it was reaction because no one else got sick. Lucas
has 2 more to do at the hospital and then he can have them at home
with H. He is looking forward to baseball season already, me I 
am enjoying the break. :)

   So with it feels like Christmas came and went far too quickly. However
I can still adore Him.

   

Being thankful...

   With Thanksgiving behind us and the calendar moving full speed ahead toward Christmas....  it is easy to get bogged down in all the things we have to do and forget those benefits we were just appreciative of and blessings we aware of.

   December for the Lauffers is a lot like December for many people
jammed packed with things to do and places to go. This week seems 
to be the only semi leisurely week of the month.

   Hannah is dancing in the Nutcracker Ballet this year so next week evenings are a flurry of activity and rehearsals. The following week is our 
biannual trip to the NIH with Cody for 2 and 1/2 days. The week of Christmas includes Hannah's infusion at home and Lucas's first Orencia 
infusion at Hershey Children's Hospital. Then Christmas, Codys's birthday, and New Years. All of that with a few Christmas parties and activities thrown in the mix.

   Those of you who know me know that I tend to get a tad bit overwhelmed just looking at a calendar that filled. Even lots of fun activities can be over tiring and stressful. My children have been know to hear me mutter "I don't have enough spoons for this" on a regular basis.

   However all that being said I want to remember to be grateful... So I am going to share my blessings with you.
1. I am grateful again that Mike is still with us! The past couple years have been rough medically, even now with unresolved issues, God just keeps giving us more story to live out.
2. I am grateful that Hannah is feeling well enough to dance and that she 
has an opportunity to dance in this wonderful production. And for the
wonderful friendships she has developed through this dance studio.
3. I am so thankful that Cody has  the benefit of some of the leading people in the field of medicine that  are studying this illness and finding 
out ways to make his and our family's lives better and maybe even another child who is struggling as well.
4. I am grateful for medicine that helps take the edge of pain and stops systemic inflammation so that more damage is not done.
5. Mostly I am thankful that God always sends us just what we need ,just when we need it! Through friends and coffee dates, through a gift cards given, and so many different reminders that He is working in our lives.

Happy Thanksgiving my friends! Happy Thanksgiving!

It always surprises me how fast time seems to pass. It doesn't seem as if we should be halfway through October and yet here we are.

Lucas has been playing Fall Baseball this season along with Hannah's dance classes (and practice for the Nutcracker) our weeks
tend to be pretty fast paced.


Right now I have all four kiddos home because Eastern is having Fall Free 
Days! It makes my heart happy to have them all here!

Last month I shared about Lucas's anxiety. We as a family have been sloshing through the waves that crash against and over top of us relentlessly for awhile now. The pediatrician looking at some of Lucas's 
symptoms wanted to have him tested for the MTHFR mutation that can cause anxiety issues. His results came back last week, he does have the MTHFR  mutation~ A1298C and it is homozygous, meaning that he got one from me and one from Mike.

More science for Mike and I to learn. I found this video it helps explain it.
Basically Lucas has strongly insufficient methylation going on in his body. It would appear his body cannot break down folic acid the way its suppose
to. Any food he eats that is fortified with folic acid is actually making him 
more sick. Folic acid is artificial folate which he cannot metabolize well. In a sense he is folate is deficient and cannot detoxify heavy metals from his 
body. So the protocol for this is methylated vitamins.

Will this help with the anxiety? I surely hope so! I have read that it can 
get worse till it gets better... quite honestly although I am sure it could 
get worse I am not sure how well we will handle it. It also means every
one else should be tested.

I am so very thankful that although I am faithless at times He is faithful!
He fails us not!

Anxiety is a brutal house guest.

Tonight as I sit here...my youngest son is laying in his bed crying. 
Why you might ask?  I don't know. It maybe that we have blood 
work tomorrow that started his descent. It may be we are starting 
a flare. It may be for some other~what I would deem crazy~ reason 
but to him it is real and heartbreaking.

This is the second night in a row... and I honestly am at my wits end. I 
know he is likely overtired with the advent of fall baseball and school 
starting. But I'm telling you my throat hurts from loudly explaining over 
and over that its okay just go to bed! This kid started bedtime last night 
(and tonight) at 9:30 he didn't collapse until after midnight last night 
(with about 15 trips out for some reason or another).

It's not always like this. In fact most nights he heads to bed reads till 
9:30, takes Flip out, gives him his snack and they head to bed not to 
be seen again till morning. But on nights like this I doubt both our sanity.

As Christians we are taught to not worry... so you tend to worry that you
are feeling anxious and are worrying... it can be a never ending cycle. So
that anxiety holds you hostage.

We are well acquainted with anxiety in the Lauffer house the hubs has 
had debilitating episodes at times. Anxiety doesn't leave when it feels unwelcome it just digs its heels in and hunkers down. It throws 
everyone around it into turmoil and dismay.

The thing I think that makes it so bad... is that people/ families feel so dreadfully alone.  Only when you have experienced it can you understand 
how this house guest over stays its welcome.  Most of us have been 
anxious or worried at times. Most of us however do not live on the verge of panic so we have no empathy for those who live this way.

So to the mama who child is teetering on the edge I want you to know
you are not alone.  That tonight we are hanging out together. Praying for
peace and strength to make it through the storm. 

Summer's Final Fling

Last week we were able to get away to the mountains and it was 
marvelous. Oh yes we still had the bickering that goes with taking 
four children ages 12-21 anywhere together, but even that was 
better because it was in the mountains.

We have not been cabin camping for at least 3 years. Parker Dam State 
Park is one of our favorite places to go. There we have the lake for 
swimming and mountains and trails to hike. We even have been visited by raccoons and an occasional bear.  So this was a long awaited trip.

The only down side to camping this year was we were unable to mesh everyone's schedule until the week before we started school. So we loaded up two vehicles and set off the 14th. Returning home the 21st, the 
younger two start school tomorrow and the older two travel back to 
college on Tuesday.   
  

So who had a mountain of laundry to do and boxes of school supplies to 
unpack and organize Saturday? This girl! Rachel was a great help with the laundry, she's my best 21 year ever!  Tonight our house is filled with excitement and nervousness about what the new school year will bring.

  

I am ever so thankful we had this last week together... now onward
to a brave new year!

                                                                             

Summer ... where are the lazy days?

  One thing I miss about teaching is having my summer off. I have a lovely home case now but getting up at 6 am during the summer hurts a tad bit. I am done by noon but I miss being able to sleep in a bit.

   In three weeks we take our trip to the mountains. Although I am excited for our time there it means when we return we have a short time before school begins. Rachel will start her senior year of nursing school... senior 

year... how did that happen so quickly? And Hannah starts high 

school. Every year is an adventure every year seems to be filled with 

challenges and accomplishments.

   Yet I am not sure I am just ready yet for the hustle and bustle of 

school.

   Hannah was started on Humira in April and it has not been fun. It

causes much frustration and tears on both our parts. So the 

rhuematologist is switching her to Orencia infusions. Humira 

is a TNF blocker meaning it blocks the effects of tumor necrosis

factor. Orencia on the other hand  does not block inflammatory 

proteins like TNF. Orencia attaches to the surface of inflammatory 

cells and blocks communication between these cells. By blocking this communication, Orencia lessens inflammation. More science than you

wanted right? 

   Orencia is one of the meds Cody did very well with for a long time.

Fingers crossed Hannah will do so as well. I so wish for the results of

Codys exome sequencing to be done so that we might have some

direction for him as well as everyone else.

  So what do infusions mean. Well instead of a sub-q injection she will

have an IV placed, labs drawn and pre meds and meds through the IV.

In all it takes about an hour and a half for Orencia. We will have to 

travel to Hershey for the first four sessions and after that a home health

nurse can come out and the meds can be given here at the house.

   For now this is the only big medicine change. Lucas will have an x-ray

to discern whether any joint damage has occurred in his hip, so for now

we are staying the course with Enbrel.  

   It is a constant battle to not give in to fear, frustration and plain

just keeping my head above water. I am so thankful that I do not walk

this path alone. I am also thankful for the small day to day victories

that make life joyful.

   

  

  

When you pass through the waters...

At the beginning of June, Cody had his 6 month check up at the NIH. We are still waiting on genome sequencing. We discussed the other kiddos and my issues a bit more in depth and increased his Actemra to weekly for the summer to see if it helps. We are set to go back in December.

Lucas has been complaining more and more about his left hip, leg, and

foot. Looking back his MRI done in 2007 and the fluid there... means

another MRI might be in his future. 

Hannah has struggled with sore joints after dance classes ~ we now have 

quite a collection of knee & ankle braces and lineaments & salves. Ice 

packs seem to be a way of life here.

It frustrates me to no end to feel helpless with just comfort measures. 

Hannah started Humira this month. I would have rather just skipped 

it... I remember Humira with Cody. It stings and burns even mixing it 

with lidocain. She has been a real trooper but its hard. Luke is doing

better than I ever would have imagined with shots. I am going to need

a small refrigerator just for meds.

The past couple months have been fraught with challenges (hence no post

recently).There is a verse that has reverberated in me though~a promise that we are not in this alone. Isaiah 43:2 When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.

I am thankful that Jesus is right there with us.

Let us not become weary....

 Galatians 6:9 'Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.'


     It is so very easy to succumb to weariness. It is sometimes so very
hard to keep putting one foot in front of the other on a path that 
seems to have no end. 
    I have a birthday coming up... I am always reflective around my 
birthday. It's my time to sort of take stock of things. I am sorely 
tempted to  look at my life to this point and be discouraged. Quite 
honestly I had hoped my life would be a bit more stable and polished 
by this point. Life is not what envisioned it would be twenty some years
ago. That is not to say that I am not extremely grateful for the blessings 
I have. I am very aware that I have things that others may wish for.
   It is just that there is certain battle weariness that comes with life.
The longing for the perfect world with out so much strife, discord, and 
illness that litters this path we walk. 
   Of course when victory is achieved after a long drawn-out battle, it is
all the more sweeter. 

This guy (I was going to say little~ because he's my little guy~only 
he's not very little anymore...) is doing something I had almost 
given up hope on. He is reading for enjoyment * gasp* not an 
assignment, but just because! This is kiddo that we struggled to make 
reading click for so very long... it fills my heart with thankfulness 
and plain old awe.

You know what I think? I think the Father knew I needed to see this. He
knew I was fighting discouragement before I could even put a name to 
what was bothering me. He knew I needed to remember that my life
isn't really about me anymore. That it is more about these four precious 
children He has entrusted Mike and I with, and  our journey together. 

Counting it all joy....

In the beginning of January, Mike began experiencing some chest discomfort that ran down his arm. We would discover 
it was the left anterior descending artery was 95% clogged. 
It was the only one clogged but it was a big one. A crazy night 
in the hospital culminated with a stent being placed the following 
morning.

Fast forward to the beginning of last week.... Due to our medical
craziness that seems to be our daily existence I lost a case that
I truly enjoyed. To say that this year has not started out the best
could be an understatement.

However, it is all about perspective. Mike is still here, that is huge.
Although it could take awhile to find another case that will contribute
the necessary financial assistance... I am able to work more closely
with Hannah and Lucas with school. Something I have missed
terribly with my last case schedule was the daily ebb and flow of 
schooling at home.

I love the verse James 1:2 in the new living translation. It says
"Dear brothers and sisters, when troubles come your way, consider
it an opportunity for great joy". I do not know what will happen
tomorrow or next week. Chronic illness and then cancer has
taught me to be grateful for each good day. To triumph in the good
days and trust in the bad days. 

Happy New Year!

Hope.  I believe the thing I like best about the start to a new year is hope.
Romans 12:12 says 'Rejoice in hope, be patient in tribulation, be constant
in prayer.'

We had a wonderful holiday break. It was fabulous to have Rachel and Cody
home from college for a whole month! It was busy at times and 
yet quiet and lazy too. Although having older kiddos can be bittersweet 
there is also something wondrous about it as well. 

We had an interesting trip to the NIH in December. The Children' s Inn is
renovating one wing so at the last minute we were moved to Woodmont 
House. There were 5 of us camping out in a room with 2 twin beds and 3 
cots. At times it was crazy but the younger two managed to have a blast
in spite of it. Lucas in particular became great friends with 
the security guard. Life experiences are what you make of them. 

We are still waiting on the genome sequencing. I remembered to bring 
pictures from Cody's rashes which they were very interested and Hershey
is sending them the slides from the biopsy. The good news is no more hematuria at this time... so we can relax about his kidneys. 

Half way through the year and independence is blossoming in the younger
two! Hannah already was fairly independent, Lucas surprises us every
day with the lessons he attempts on his own. We have fallen into a 
comfortable schedule where Mike supervises Science and History while I
take care of Language Arts and Algebra.

That is not to say everything is always rosy.{Just keeping it real folks} 
Many days I feel like I am not doing this whole shebang well. There are 
days I compare myself to others and wonder why after 23 years of 
marriage and 21 years of mothering I am not better at this. Working 
and continuing to do school at home is a managed chaos that often 
makes me question my sanity.

Which brings me back to hope. Hope in the knowledge that this life
is not all there is. That 'we have this treasure in earthen vessels, to show
the exceptional power belongs to God not us' (2 Cor 4:7 my paraphrase).
Hope keeps us going when there seems no end in sight. Hope is the light at the end of the tunnel.

May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope. Romans 15:13