I was more adventurous in my younger years. I did journey 8hrs and 500 miles away from Pennsylvania to a sweet little town called Lost Creek, Kentucky for my first teaching job after college. It was there I met and married this sweet guy and started an adventure of a lifetime. Twenty-six years and four children later life the adventure continues daily. This disease has been and continues to be an adventure. The dictionary defines adventure as 1. an exciting or very unusual experience. and 2. a bold usually risky undertaking: a hazardous action of uncertain outcome. Check and check. People often ask what exactly is it? I have to say well our "working diagnosis" is Systemic Onset Juvenile Idiopathic Arthritis because we think it could be that but even the experts are not sure. So... the search for a diagnosis... is an ongoing you guessed it adventure. The downside to this adventure is fever, rash, swollen lymph nodes, enlarged liver and spleen, inflammation of the lining of the lungs and or heart and the list goes on and on. The newest plot twist sensorineural hearing loss. So the quest for a diagnosis continues. Yet there is another adventure playing out simultaneously in my life. My walk with God is the most wonderful part of this journey. The stakes and rewards are great and enduring. He is my strength when I can't go on.
Quite frankly I don't know how I would get through some of the difficult days without Him by my side.
This past week many people celebrated their love for one another. Some
more lavishly than others ~ some struggling since the person of their dreams seems nowhere to be found. We celebrated quietly.
I came home to a quiet house that I share with this guy that captured
my heart 27 years ago. He had left a sweet note on the whiteboard in the kitchen before leaving for work, the kids were all at engaged in various
activities, and I could enjoy the peace and tranquility.
I am learning to see my life with eyes of gratitude. I believe our desires will not ever really be satisfied by well carried out date nights or grandiose expressions of love, or even happening upon the love of our lives... until we
learn to see gratefulness in our ordinary everyday lives. We need to learn to be people who love and embrace what we already have. I am learning to embrace the provision of the Lord in the circumstances I have not asked for and in that same vein, I am learning in marriage to be the love I want to receive.
“Be completely humble and gentle; be patient, bearing with one another in love." Ephesians 4:2 "Above all, love each other deeply, because love covers over a multitude of sins." 1 Peter 4:8
We finished Lucas's first two infusions at Hershey and next month can
have them done at our local hospital. So baring any complications all infusions for both Hannah and Lucas can be done on the weekends near home. Tomorrow is one such day. I am grateful to be closer to home and not have worry about missing days at work.
Both Hannah and Lucas failed their hearing screenings so... with Cody's history of the sensorineural hearing loss it's more than a bit concerning. So our next big adventure/appointment will be audiograms in March.
Tuesday, January 23, 2018
“We are not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be.”―C.S. Lewis
It feels like it has been an ongoing battle with the insurance company
since the November Rhuematology appointments. I had an insurance
rep tell me years ago, when Lucas was little guy and synovitos showed
up in his hip, that it wasn't personal. But I have to tell you when it's
your child it feels very personal.
After 11 weeks without medicine, our guy is getting an infusion of Remicade.
We had hoped to start him on Actemra a medicine which has helped two
of his siblings. However, Remicade is what insurance would approve and
so after much debate and consternation, Remicade it is.
I heard someone say once "fear the disease more than the medicine" ~
but truthfully I fear both. I fear the side effects and the cancer risk of
the meds and I fear the inflammation his innate immune system can
do to his brain, eyes, ears, joints and organs etc...
So today here we sit at Penn State Hershey Children's Hospital getting
the first Remicade infusion. Remicade(infliximab) is a chimeric IgG1k
monocional antibody used to treat several inflammatory conditions.
A chimeric antibody is an antibody made by combining genetic material
from a nonhuman source, like a mouse, with genetic material from a human being. These antibodies then block the action of TNF Alpha and reduces inflammation. My defense mechanism when faced with medical concerns is
to research.
I looked everywhere to find someone else's experience so we would be
able to have an idea of what we were facing and couldn't find anything.
So I thought I would document today in case someone else is looking.
We arrived at the hospital at 9 am. Lucas had his vitals checked, IV
placedand blood drawn, two tubes. He was settled into his infusion room
and given Solumedrol through his IV which took about 15 mins and then Benadryle through the IV for about 15 minutes as well. He had a small
reaction to the IV Benadryle, his arm felt like it was burning. It was almost
done so they placed hot packs on his arm for comfort and made a note to
dilute the Benadryle more and run it slower next time.
Around 10:30 the Remicade was started. The nurse told us it will run
for two hours and ten minutes. She will come in every fifteen minutes to
increase the speed of the medicine and check his vitals every 30 minutes.
Then he will be observed for an hour before heading home.
And pretty much how it went. He didn't have any big reaction to the meds.
The nurse did tell us that most reactions happen on the 2nd infusion, so
we'll cross that bridge when we come to it, two weeks from now. He was
very pale toward the end of the the infusion.
He was very sleepy through out the whole infusion but never fell asleep.
He was thankfully not terribly grumpy. Now we are in the observation
process and he is looking toward lunch.
I was thinking about the above C.S.Lewis quote. I was a young child
when I sensed God's presence and often when pressed I can truly
say I don't know how to do anything but trust Him. Innately I know
that He has our best in mind. But the journey has many highs and lows
these medical struggles are definitely lows and yet He is here with
us. Just like Daniel in the lion's den. He is Immanuel God with us!
Which means he has the power to turn whats hard for us into
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, 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 isnotthe 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 thingsshouldbe different—in fact,will be, someday. But that doesn’t seem to help much when we’re staggering beneath the bereavement of the way thingsare. 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.
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.
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.
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 songsandshouts of deliverance. Oh and this makes my life full,new company dancers and top team for 14 & 15 year old's.
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
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.
