What I want for Christmas

The other day I was asked the question 'what do you want for Christmas?'
and I said hmm I don't know I'll have to think about it.  Today sitting in the hematologist office the answer came...  I want this illness and all it entails to take a vacation.

The reality is no illness takes a holiday. In 2003 the holiday season started 
with Cody spending 10 days in the hospital at Thanksgiving. Last Christmas Hannah could barely walk without feeling faint. This week we are battling with the insurance company once again over medicines.

Illness doesn't stop because you have special plans or a lot to do. We have
sat out of many holiday activities just because of no energy for said celebrations or just too many germs floating around to be exposed to right before an infusion. Everyday seem to be a new fight, with some good days and some bad.

Today was a day mixed with good and bad. The good news is Hannah's iron
levels are holding steady. Which means the Actemra is helping to keep the disease in check and resulting in less anemia. After a crazy busy exhausting yet thrilling show week this is a victory and praise report. But.. In my last post I said Lucas was switching to the new infusion medicine Actemra, well insurance is refusing this until he has tried Remicade. Remicade is a med we have tried to steer clear of it has more side effects and risks but does work wonders for some people and with the psoriasis patches Lucas has been 
experiencing may be a winner.

We have to have another Orencia infusion at home, and we had already 
been discharged from home health because of the medicine switch. Then
the first 2 Remicade infusions must be done at Hershey.. chance of a 
reaction are very high with the 2nd infusion. So after those two then we can switch to our local hospital and not have to play "Rock,Paper, Scissors" on
who gets to try and take off work to hang out with our sweet guy at the 
hospital. Oh and its January these two infusions are scheduled for so we 
work around bad weather and again have to be hyper vigilant to avoid infections.

I am not likely to receive my Christmas wish of a holiday from this illness,
however a line from Sundays teaching has been a lifeline on days like today "God won't always keep you from trials -but He'll always keep you through
trials".

We are learning to not grieve the things missed but to take joy in the
opportunities we are able to partake in.

Be joyful in hope...

         

       Be joyful in hope, patient in affliction, faithful n prayer. Romans 12:12


  Its dance rectal week here in the Lauffer house. It will be a long and yet
rewarding week. Two nights of practice, two dress rehearsals and two performances... so yes a long week. 
  In order to be able to dance like this:

   This has to happen:

   It's a joyful month as we celebrate Christmas. We celebrate in defiant 
hope. Circumstances are not always joyful. This is a three possibly four 
infusion month. For the past year, we have been able to have biologic 
infusions for our two youngest in the comfort of our own home. While
 this is not always easy, it means a little less running and juggling for mom keeper of all appointments. This month we changed biologics from Orencia 
to Actemra for both kiddos.
   Actemera cannot be done at home. Bloodwork has to be done before the 
infusion and IV prednisone and Benadryl must be given ahead of time. It
is a bit more dangerous so we have to have them done in the hospital.
Hannah had one this past Sunday and will have another in 4 weeks on the 
30th. She may also have to have an iron infusion that is pending the
iron panel results.
   This month Lucas switches to Actemra as well. Which means we are going
to become fast friends with the nurses on the pediatric floor of our local hospital.
   On this journey, we are traveling we deal with two types of people. Those 
that will tell me I don't know how you do it you are so strong (believe me 
when I say I am far from strong - but you do what you have to do
especially for your children) and those who know what we are battling daily and think we are overreacting. Both are hard to respond to... I am not brave and I don't feel very strong I don't want to be put on a pedestal. But until you've juggled my schedule or cried and prayed over medicine changes, side effects etc. be overly critical either.
     We celebrate a defiant hope. I think I've shared this passage before but I am going to share it again because she says it so much more eloquently than I and it speaks to me so much right now. 

"This is not the way it’s supposed to be. All this sadness and bad news and dying. All these anxious phone calls, wars, scary test results, car accidents, terminal diagnoses, ruptured marriages, dogs with cancer, infertility, prodigal children. We hate it, not only because it all hurts like hell, but because eternity itself is encoded in our hearts, telling us that things should be different—in fact, will be, someday. But that doesn’t seem to help much when we’re staggering beneath the bereavement of the way things are. Of course, we feel this way—of course.But it’s only when we bare our hearts to the pain of this brutal paradox, that our hearts are fully open to the beautiful mystery: God sent His Son right into the very middle of this mess. He broke His centuries-long silence with a baby’s cry. Almighty God became helpless, humble, vulnerable to the hurts and evils of this world, so that we—and our hurts into the bargain—might be redeemed. What on earth does redemption mean but to get back all that is rightfully ours, not because we’re good enough, but because we’re loved enough. Not because we deserve it, but because it’s the way God wanted it to be all along. The story is clear all the way through the Bible: God doesn’t want our sacrifices and our stuff—He wants our hearts. And I believe that He is gathering up everything that has ever broken our hearts to make it all right again in our redemption. I don’t claim to know what that means, particularly this side of heaven. But if there’s one thing I’m not afraid of (and, believe me, there are plenty of things I am!), it’s that God will turn out to be less loving, less good, less tender than I always hoped He’d be."-Lanier Ivester

  My hope for you all this Christmas no matter what you are going through is
that you would know that God is not limited by appearances or bound by our circumstances. And my friend if you’re hurting this Christmas, know you are beloved of a God whose special concern is the brokenhearted.
   

  

  
     

Shifting my focus.

I had an epiphany driving home from dance yesterday.  I have said before anxiety is often an unwelcome guest in our home. Sometimes I think we focus on little things to be anxious about because the big things are just too overwhelming. So, for 


example, I could worry about the scar an IV treatment will leave, instead of the scary medicine that is filling my child's body. 

My youngest came to me a couple days ago with a request for jeans. He's had a bit of a growth spurt and needs a longer length. I explained that I 
know he needs them and I am working on it. He reminds me every 
couple days. He's anxious about many things but this is the smaller thing
to obsess over.

My epiphany was this... I come to God the same way. My worries are bigger
but I tend to forget he's working on it and has everything under control.
I come with a basketful of troubles it seems, we have two infusions this 
week, I came into the month  $XWY behind, I am a month behind on the 
house and a half a month on the car and its 50 days till Christmas. Lord, I 
don't feel good, I'm struggling how do I do this?! 

I hear Him say to me the same things I whisper in my youngest ear,
" I'm working on it buddy, I've got it under control" and "you don't have to do this on your own TRUST me". The difference, of course, is that I have very limited resources and He has unlimited!

I said before I have been trying to remember to take joy in the small things.
That shift in thinking is a work in progress for me, some days are better than others, I'm getting there.

Here's something I am thankful for although it stinks to have to take my beautiful girl to the hospital for an infusion, we are surrounded by nurses
that treat us like family (helps when you've had more than one kid as a frequent flyer) and that I can be here with her. I am thankful that 
we get to do my son's coming infusion in the comfort of our own home. I am thankful that Cody's meds can be done sub-q and he's doing okay with those.

Mostly, I am thankful for true friends who love across the distances. I am thankful for friends that speak truth into my life even when I don't want to hear it. I am thankful for friends who uphold us in prayer when life gets dicey and are just present when I need them.

Finding Joy

           I have to admit lately I am overwhelmed by most everything. So I have been making a conscious effort to find joy in the little things. This morning I crawled out of bed at 6:30 to take Hannah to dance and on the 
way home I was overwhelmed by the beauty around me on the 
drive home. Good thing there was no traffic to be aggravated by 
the crazy lady (😉 me) who stopped to take several pictures.
       
          Hannah, Lucas and I have been reading The Hiding Place by Corrie Ten Boom. The passage that has stood out to me the most is this section discussing the fleas in the concentration camp barracks where they slept.
'The fleas! This was too much. "Betsie, there is no way even God can make me grateful for a flea." "Give thanks in all circumstances," she quoted."It doesn't say 'in pleasant circumstances'. "Fleas are part of this place where 
God has put us."'

       I do not have a problem with fleas but, I had my ultrasound and chest 
x-ray on Monday. My chest x-ray was clear but, my ultrasound showed that 
my liver is enlarged. I have had more than a couple of moments of trepidation this week. This coming Monday I meet with the doctor 
and discuss a game plan.

        This does not necessarily explain my odd bloodwork results but it does explain the discomfort I have been feeling lately. I have had pain around my
diaphragm on the right side and some right arm and shoulder pain. This is
pain that I would have chalked up to break through arthritis pain and taken Tylenol (I take Nabumetone daily for the arthritis) but I have been pushing through without it this week because Tylenol is not your livers friend. Did I
mention how scary it is the lookup an enlarged liver on the internet? Yeah
probably not my best idea.

        My mama is always quick to remind us to count your blessings when
times get tough it puts things in perspective ~ there always seem to be
more things to be thankful for than not. So, me I'm just over here finding the joy in everything I can.

         

I am not good at waiting...

So we have been playing the waiting game. Its a game I admit I am not very good at playing.  In my favor we have been super busy so I have a lot
of distractions.

School is in full swing. Dance and fall baseball have started, but I owe some of you an update. Honestly I haven't had a new information to share about me as of yet. 

Hannah is due for labs which will tell us if another iron infusion is needed. 
She seems to be responding to the Actemra well this time. We finished her second infusion at Hershey and can now schedule closer to home.

I have been fairly lucky up to this point to schedule my doctor 
appointments near the same time as hers as to not miss so much work but 
it is a challenge. So on Monday afternoon I saw the Hematologist who took a boat load of blood. Twelve tubes to be exact and scheduled me for a chest 
x-ray and ultrasound of my spleen and guess what we do next? You got it 
wait. 

Besides bruising easier than before and having to take a nap whenever the chance arises, I am hanging in there.

Hannah, Lucas and I read together almost every night. Our book right now
is The Hiding Place by Corrie Ten Boom. My favorite quote so far is this "Worrying is carrying tomorrow's load with today's strength- carrying two 
days at once. It is moving into tomorrow ahead of time. Worrying doesn't 
empty tomorrow of its sorrow, it empties today of its strength." In this waiting game it is difficult not to worry or get ahead of myself.
  

I am finding strength in Psalm 32:7 You are my hiding place; You, Lord, protect me from trouble; You surround me with songs and shouts of deliverance. 

Oh and this makes my life full,new company dancers and top team for 14 & 15 year old's.

Updates

On Monday, we had Hannah's cardiology appointment, the good news is her heart is showing no damage from the under oxygenated red blood cells. Tuesday at Hershey she had her iron infusion. Per her Hematologist, the hope is the iron infusion will boost her levels and provide her with some relief.

Repeat iron infusions will be determined by labs and if she can maintain her hemoglobin level.  The doctor suspects she will have at least one more. Infusions can be done every 4 to 12 weeks depending on her levels. IF for some reason this does not help the issue then we will have to determine whether or not her bone marrow is functioning and if a blood transfusion is needed. So we, of course, are praying that the iron infusion(s) do the trick.

Our evening was rocky. Hannah had a bit of a reaction to the iron after we returned home. She had a normal reaction of nausea, joint/muscle pain, and headache but, she had a rare reaction of a high fever. So we played phone tag with

Hematology and Rheumatology for a couple hours. When morning dawned she was 

much better.

Wednesday's infusion was but tricky because Lucas is a hard stick. So after 4 attempts we finally got the IV in. The rest of his infusion went with out a hitch!

My appointment Thursday was a bit more complicated. My IgM levels are 

continuing to drop so... they are waiting on some titers to come back and then depending on what they read I will have to be revaccinated and then tested 

again. The possible outcome being IgM deficiency and then treatment would 

be IVIG every so often and possibly prophylactic antibiotics.  The other 

possibility is that I am dealing with Myeloma so I am being sent to Hematology 

to rule that out. Until then we pray and keep soldiering on.

Friday was a long day...LONG .  We left the house at 10 and returned home at 6.  Actemra is a longer infusion because blood work must be done before hand to 

check liver counts to make sure it can be given. Hannah was a trooper and so 

far has responded well.

Many thanks to all those that prayed us through this week! We covet your continued prayers. 

A high point this week is that our chickens started laying! It's just the first week

and from the 3 girls,we have 7 eggs!

Miles to go before I sleep...

"The woods are lovely, dark and deep, But I have promises to keep,   

 And miles to go before I sleep,..." “Stopping by Woods on 

a Snowy Evening" by Robert Frost

       As I look forward to following week, the words from this poem echo 

through my mind. To say that next week will be rough is an understatement.

Just the thought of it makes me want to crawl in bed and cry. Part of it is

that before every specialist appointment there is a hope ~ a hope that

this will be the appointment that will reveal an answer, a diagnosis ~ but 

more often than not it just leads to more questions.

    Since December, well even before, Hannah has been suffering, struggling

with 'Anemia of Chronic Illness'. But she also has been dealing with an issue

of getting breathless and dizzy with exertion ~which made dance and its

recital very difficult as well. Right after she left for her missions trip it was

decided a trip to Cardiology was in order. So first thing on next weeks 

agenda is her Cardiology appointment.

  Because Hannah anemia has gotten so bad on Tuesday we have an iron

infusion scheduled at Hershey Children's Hospital. Now normally a 45 

minute to an hour drive is not THAT bothersome but, the 

appointment/infusion itself will be 4 to 5 hours long and because this 

is an unknown it is causing a bit of uneasiness. Plus it makes for a long day.

  Wednesday, Lucas will have his regularly scheduled Orencia infusion. Just 

his normal every four-week thing. Although it is a regular "normal" thing it

is never easy.

  Thursday, well it's my day. A sweet soul said to me earlier make sure you

do something for you in these two weeks (we have 2 weeks from the end of 

ESY till the start of school) ~ I do not think this is what she had in mind.😏

But I have an appointment with Immunology for me. The past couple of

times I have had labs drawn my IgM's have been pretty much nonexistent.

This could be the reason I was sick so often last year and why although

Enbrel help my joint issues I just couldn't stay well enough to take it 

regularly. This is another one of those things that could potentially give 

answers or just more questions.

  Finally, Friday brings a change in infusion medicine for Hannah. She is

switching to Actemra. A long time ago Cody had these infusions but was

able to switch to sub q injections at 19 and he has done quite well with

them the past couple years so we are hopeful this will be a good 

switch for Hannah. However, this also means hospital infusions since

Actemra is not approved for home infusions. Also, the first couple must

be done @ Hershey before switching to our local hospital. So Friday back 

we go to Hershey for that.

  If you pray for us, prayers for peace and just overall endurance would be

greatly appreciated. In the midst of all this, we are trying to get ready for

our upcoming new school year with a high-school freshman and 

a junior/senior. 

 And the next week you ask? Well, I do better if I just take one week at 

a time. 😉 

  FYI August is International Autoinflammatory Awareness month. Please

hop over to The Autoinflammatory Alliance (autoinflammatory.org) and 

learn more about these rare diseases.

'Yurt'ing It and Rhuematology

This past weekend we went on an adventure. We camped not too far from the house at Codorus State Park in a Yurt. It was pet-friendly

so this guy got to join us. That in itself was an adventure. Flip did do very well though no barking at other dogs just some whining from time to time. Rachel, Hannah, Lucas, and Mike hiked. Hannah honed some of her photography skills.

   We sat around the campfire & ate smores. All in all, it was a nice break even if it was just 3 days & nights.
    Today we caught up with our rheumatologist. Hannah is not doing as well any longer on Orencia so the decision was made to switch her Actemera. Actemera is a bit more immune suppressive, and a bit trickier as it can not be done at home. So her first two or three will be done at Hershey afterward we can switch her to our local Hospital. So her chest x-ray appears clear 
and we consult with Cardiology in August if they find nothing amiss 
we will check her pulmonary function ~ still trying to get to the bottom of 
the dizziness and breathlessness upon exertion. Along with the new 
Actemera infusions we have an iron infusion set up in August as well.
    Stranger things Lauffer style continues this week as Lucas noticed a rash on his feet and ankles which appear to be per rheumatologist petechiae.
That is a new rash for us... he also has some low white cell counts so before
they raise his current dose of Orencia they want to see want his next labs 
show. He is still having a great deal of pain in the left hip/ knee/ heel areas.
    What made the mini vacation so special is it offered a bit of normalcy.
There were still pills to pass out and ice packs at bedtime a couple of nights
but it was a much-needed break. 

NIH June 2017 Trip

    I want to say good things about this trip. But the truth is... we left the clinical center on Thursday feeling a bit adrift. When we heard about the NIH as a possibility 12 years ago we were so excited... and don't get me wrong they are doing wonderful things there and have helped so many. We just are not a success story of theirs, at least not yet.

    It is discouraging to baffle some of the best doctors in the field. Yet that's what we seem to do. The past year Cody has had more pain and more 

fatigue. He also has probably had more fevers as well but since he doesn't chart his temp when he feels bad or track things it's hard to see a pattern. 

Hey he's in college, this is a self-advocacy skill he needs to start using, I am not there. Since he has been on almost every biologic at this point his team 

is at a loss.  Because he is having more issues with his hands they did 

x-rays of them and of course more blood work. Only 10 tubes this time.

They will be contacting him for another visit or at least with a plan in the near future.

    His body habitus and the stretch marks on his back came up again. So

they are referring him to a Doctor at Hopkins, she is a specialist in Marfan's.

And that was our visit in a nutshell. We came back to the Children's Inn and

I collapsed on the bed and slept for 2 hours. I tend to sleep when I'm overwhelmed, well that and cry, and to be honest I did both. 

    While checking my email at the Inn, I received an email from Hannah's

rheumatologist. He is concerned that some of the symptoms she has been

exhibiting breathlessness, low bp, sometimes dizziness - although she is

very anemic may not be from the anemia and he would like her to see a cardiologist for a consult and possibly have her pulmonary function tested.

Considering we just put her on a plane with the youth group for a missions trip in the Dominican Republic this tests my faith.

   While writing this hematology called to schedule an iron infusion because

her levels have again dropped. So there's that ... oh and I start work again on Monday for the summer

session.

   Yesterday after returning from clinical the verse that was pounding through my head was Proverbs 13:12 Hope deferred makes the heart sick and I was definitely feeling heartsick. But the Lord gave me this one to chew on instead Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.

Being strong and courageous is a challenge to be sure.

Baseballs, Point shoes & Chickens oh my!

May is a very busy month for us. We are wrapping up school for the year.
WooHoo! This girl turned 16!

We are also busy getting ready for the spring recital and the spring baseball
season is well underway. So we have this happening...

  And it has been raining a great deal which makes baseball and dancing more of a challenge. My own feet and ankles (and knees etc) make heading out to work more of a challenge as well.                                                                            Any free time has been spent with these girls. At 11 and 12 weeks they are something else. We had something small trying to tunnel under the coop.  So we moved it closer to the house. We also put a hardware cloth 

skirt under and around it, then mulched and set stones to add more weight to the skirt. 

This is Dixie she is very inquisitive. She also likes the have her picture snapped.

This is Josie in the lower picture you can really see her lacing coming in.

                                                                                  

Then here is Lucy she is definitely top of the pecking order.

And a few pictures of the new coop situation.             

                    

                                                                        

                                           

                         

April showers bring flowers, mud puddles and weeds

We have had at least a week of rain... yes, yes, I know April showers bring May flowers. But do you know what else April showers bring? Weeds. Yes,

the flowers coming up but so are the weeds. In fact, they are coming 

up faster than I can pull them. 

And then there is mud. The girls moved into their new digs last weekend and

they are enjoying digging around in the mud for worms.  We have a new 
feeder and waterer system to put in that we planned on doing this weekend

but the rain stalled that idea. Keeping their water clean in all this rain is a full-time job.

We managed to make it through March and most of April without a huge

health scare. I mean we still have the platelet issues and Hannah's iron/ red 

blood cell thing going on...but, Easter was relatively quiet. Very thankful 

for a respite.

I was thinking back to when Cody first started having infusions and on months when we would have 2 the trauma would sideline me with depression. Now with both Hannah and Lucas having them, we do at least 2 sometimes 3. It's amazing how it just becomes normal.

My friend who visited us just recently, who has her own barrage of medical people coming in an out, said (when talking about our cart of medical supplies) 'Oh, doesn't everyone have that in their living room? 😉.' It's

become old hat but never gotten easier. What does make it worthwhile is to see Luke on the pitching mound and Hannah leap across the stage at dance. It gives me perspective, that while those things are not painless activities for them... they able to do them which might not be an option without the medicine.

  

Life is all about choices. I am choosing joy!  I will take the mud puddles and the weeds for the flowers.