Deeply Profound Appreciation

How do you show people in your life how deeply and profoundly you appreciate and love them?  We have been surrounded by such incredible love…real true love…the kind that needs no words because actions are so much louder.

People ask Michael and me all the time… “How do you do it?”… Honestly, we just do it.  We have to, but when we pause to really think about that question...there are moments when we don’t do “it” well and there are moments we do “it” great and then there are moments we have know idea how to do “it”.  But we do “it” together.

This last month has been incredibly hard medically for both Logan and Parker.  How did we do it?  The answer…with love…there were people in our lives who came and cleaned our house, helped with staying with Parker so we could be with Logan in the hospital, listened as we processed aloud, sent us encouragement through messages, prayed for our strength and healing, and picked up groceries/meds.  That is real love…

So today, we thank the people in our lives who have shown us love…you carried us through …so we could do “it” together.  We love you with all our hearts.

Our Happy Day in Honor of Jenny!

We knew the price would be great, but we are so glad we made the investment…As both our boys are resting today, we reflect on the genuine love that overflowed yesterday at the Parrot Heads of Central Florida’s “Fruitcakes in the Alley” event, (http://www.fruitcakesinthealley.com/) where all proceeds went to the Arthritis Foundation in honor of all children with juvenile arthritis.  Our family was a part of something wonderful…yesterday was such an amazing experience.  The Parrot Heads know how to party but they only “party with a purpose” and talk about a “purpose”…George Schott, dubbed “the first dude” because his lovely wife Lisa Schott is the President of the Parrot Heads, is one of the most amazing first dudes one could ever meet.  This group has rallied around George for a very specific purpose.  His daughter, Jenny, passed away 5 years ago with complications from systemic JA and this event is to honor her and to continue to hope for a cure for JA.  (Jenny’s Story:  http://fruitcakesinthealley.com/about-us/jenny/)  A cure can only come with funds and boy oh boy, does this group know how to come together and raise funds and awareness!

We were all swept away in the moment, pure adrenalin running through our children’s veins, giving them energy to “party with a purpose” right along-side these amazing Parrot Heads.  Parker was the honoree this year and he had the honor of two dear friends joining him in this honor:  Sadie and Delaney.  The delight in these children’s eyes filled us parents with such joy, thankfulness, and a closeness that is beyond words.  Some days it is so hard to smile and smiles were contagious yesterday!  You know, the kind of smiles that fill your heart so full that tears try spilling out to make room for the happiness. 

If you have been following us in our journey, you know that Parker’s brother, Logan, has also had some medical issues.  Just prior to this event we found out that he does not have a tumor, thank God.  He has something called occipital neuralgia.  For a month now, he has had an incredibly severe headache.  I am sure you can imagine how loud and painful a bowling alley party can get for a kid with a severe headache.  But Logan insisted on going and supporting his brother and all children with JA.  So, he did and with earphones and adrenalin he joined in the fun.

I am sure that many are wondering how Parker could possibly make it through this day…well, he did…with the help of lots of medicine and lots of cheering on…and LOADS of love that filled the building.  And dear Delaney and Sadie were right there by his side.  Friendship and understanding connects these children.  They have strength beyond strength.  And we are so proud and inspired by their strength.  In multiple moments they helped each other out and the sweetest moments were when Logan and Drake (Delaney’s brother) supported these kids in just the right way…they “know” what to do and when to do it!

But back to the Fruitcakes in the Alley…Parker opened the event with a speech.  You can hear it at this link  :Parker's Honoree Speech

The day was full of fun:  bowling, dancing, eating, raffles, bidding, jamming, and awards.  The greatest award was seeing our children putting medals on all the finalists.  But nothing prepared us for what we were about to experience…the final award went to the winners of the bowling tournament and as our sweet kids Parker, Sadie, and Delaney went to put the medals around their necks, they took their medals from their tiny hands and put the medals around the kids’ necks.  The true winners…I will let the pictures speak for what we experienced…

 

 

 

 

 

 

Thank you Parrot Heads.  We are that much closer to our children’s CURE…just what I am sure Jenny would HOPE for!  And it’s never too late to help out.  Parker’s Purple Playas are getting ready for

our spring walk with the Arthritis Foundation and if you would like to “party with a purpose” with us, join our team….or make a secure donation, his walk link is:  Parker's Purple Playas AF Walk  

A View in Our Window as We Walk with HOPE…

When raising a child with a chronic illness like Parker’s, we find ourselves reflecting on life’s gifts.  We are incredibly grateful for the medical staff that surrounds our son.  Their wisdom and expertise have definitely been challenged this year and they continue to strive to problem solve and find the best possible solutions.   We are seeing some progress…slowly…  Some days bring us much happiness as we see a glimmer of HOPE when Parker’s smile returns and his voice has energy and movement is smoother.  But there are those days that cause us to pause for we have realized that we have to make some adjustments and accommodations to how we live.  This is the window into our life that others outside of the world of “juvenile” arthritis do not see. 

As we walk with HOPE, we do not want to dwell on the hardships but we so very much want the world to see into our window.  We want the world to support these children.  Arthritis comes in many forms and for some time now, there has been lots of discussion on how unacceptable arthritis is…but the world doesn’t realize that our children’s arthritis is VERY different than grandma’s and grandpa’s arthritis (and yes, that too is unacceptable).  But, people somewhat expect elderly folks to have some aches and pains… People do not expect children to be in pain, and they especially don’t expect children who are so darn cute and happy to be living in pain.  In fact, some children get so good at dealing with their pain that perceptions are that they are “faking it”…I hear this from many families.  But our children do live in pain, every day…and they learn to “accept” it because they need to endure and push on and move forward.



Friends in the Infusion Room



And that endurance is to be greatly admired and celebrated.  Last Friday, we spent the day in the infusion room.  On this particular day, there were multiple families present who had children with some form of juvenile arthritis (systemic onset, dermatomyositis, polyarticular JA, and overlap syndrome).  There were also two children with cancer.  I completely marveled at the strength, compassion, and wisdom of all these children.  They each are on their own journey but they are also “together” helping each other.  They talked about their treatment, their school issues, their boo boos and some also talked about their favorite games, funny events, and accomplishments.  But the best was witnessing their smiles and exchanges of hugs.  I was deeply touched by one girl, who was in a great deal of pain, who comforted and cuddled a smaller girl and allowed her to hop into her recliner with her.  And there were two boys close to Parker’s age who chatted away with Parker.

Mom and Parker

And I was grateful to have one of my dear friends by my side on Friday…I knew Parker’s blood work was not good but I didn’t realized how bad it was…just her presence made it easier to hear about how Parker will need to continue receiving IVIG every four weeks because his immunoglobulin levels are too low and none of his vaccinations took…all his titers were off.  For those of you who have been keeping up with our blog, you already know all about this…but for those of you who don’t, you can read the post done on 12-30-11 to get up to speed.  The good news is that the IVIG will hopefully build up his immune system and through the plasma of other’s blood his titers are expected to improve because the donors have all received vaccinations…so it will be like he is receiving them through other’s donations…what a gift!  We return in two more weeks for Parker’s second IVIG infusion.  He is also continuing with his increased dose of Actmera infusion and the once a week shot of Enbrel.

Since our journey has started, Parker has been asked to “rate” his pain.  He is not a fan of the number system of rating pain.  1 is great, no pain, happy…. and 10 is the worst pain possible…well, he has pretty much been at a 10 with an occasional 8 or 9 since 2008.  However, this week, HOPE shined its beautiful light on our strong kiddo.  On Wednesday, he was a 6-8…but on Thursday afternoon, he announced that he was a 4 from the shoulders up and a 2 from there down.  I did the party dance around the living room.  Needless-to-say, we celebrated this wonderful news with the doctors and nurses and friends on Friday…even though Friday’s pain was creeping back up to a 6-8.  This is HUGE!  We are NOT changing his treatment plan and we are going to continue down our path.

So remember that window into our “life” I was talking about, well yesterday and today have been hard again.  Parker is even having a hard time just playing video games (which can usually take his mind to a less painful zone).  We find that we try to explain “why” he is worse:  it’s colder; he had his infusion…he will bounce back…Well, who knows…but it is just harder.  He is sleeping more today and last night he had trouble breathing and had to be nebulized.   These are the days no one “sees”…but we just slow down a bit, take it easier, and try to focus on other things to help him take his mind elsewhere.  We so want these days to go far far away.



Dad and Logan



And then there is Logan’s current journey.  If you read Michael’s funny blog about Logan’s recent hospital stay, you know that his childhood migraines have taken a twist.  Some of it seems to be related to his fluctuation in his hormones/puberty.  But in addition to his migraines, he is now having cluster headaches and the stress of our lives certainly cannot be helping matters.  We are still waiting to get in to see the new neurologist who is with the university’s headache research clinic.  His appointment is the 25^th and until then, the anti-inflammatory is helping some; he is still taking his migraine meds; and he is on home oxygen therapy.  However we just found out this week that the oxygen therapy can only be a temporary fix since too much of it can burn the lining of his lung.  Jeeze Louise…why didn’t they tell us that we he was discharged from the hospital.  Fortunately, we have an amazing family practitioner who filled us in and she is also running more blood work.  Again, we love the medical staff supporting our children.

But as hard as our journey has been, we are truly a happy family who is just having a hard time right now.  I am incredibly fortunate to have Michael in my life.  His sense of humor lightens our days.  We share responsibilities and our boys deeply love each other.  I am in awe of the parents who journey this without a spouse to support them and help them make decisions.

We are also so incredibly thankful to the support we have received from our family and friends.  We know it’s hard to watch what we are going through…and it has been hard for us to ask for help.  But we need help…yes, I am saying it…



Giggling in his dreams as we approach the hospital.



Most importantly, we need more research on Juvenile Arthritis and auto-immune diseases.  Our children need a CURE.  We are looking for friends and family to walk with us on May 5^th in hopes of a cure.  We would love for you to join us.  We will be the sea of “Purple Playas Pounding at JA” in support of Parker and all others with JA, RA, OA, and all the other A’s….  Registration is FREE.  Click here to join Parker's Team Page

We continue to HOPE for a cure; we pray for a cure; we educate others to advocate for a cure; we walk for a cure; and we will continue to always always fundraise for a cure!  And just as families who have children with cancer want to hear that bell ring when a child with cancer is cured…we (JA Families) want to hear our bell ring too, so that our children can leave the infusion room with a cure!  ALL our children need a CURE!

Logan’s Week in the Hospital, from a Dad’s Point of View

Logan’s Week in the Hospital, from a Dad’s Point of ViewSo before I go any further, I want to thank all of the parents who stay with their children while they are in the hospital.  This week I spent time in the hospital with Logan, not Parker, but Logan.  I still do not think I understand all the medical terms to hang with Parker in the hospital and since Rochelle handles those visits I figured the least I could do is take care of Logan.  So keep this in mind as you read this.

This is my recap of the week.  I am sorry for the length of this, but I promise the last paragraph is well worth it.

Monday Jan. 2^nd

                We as a family have this great vision of 2012 being a much better year than 2011.  I handle carpool detail on Monday’s, so Logan and I leave to pick up all the kids and get them to school.  Parker is not feeling so hot, so he stays home.  I get home, start working, all is good.  Logan gets out of school early on Monday, no problem, go and pick him up.  He tells me on the way home he is not feeling too hot.  We get home; he lays down only to wake up a couple hours later with a headache.  The headache turns into a migraine.  So 9pm rolls around and he is really not doing good, really bad.  Off to the ER we go.  Standard procedure, IV started, go over all the meds he takes, you all know.  11:30pm, Dr. comes in and says we are going to give Magnesium; this should take the pain away.  1^st bag in IV, nothing, so let’s try another one.  Did not work.  Toradal, that should do it.  Not.  Time for a CT scan.  Results good.  So they give a script for some pain killers and send us home.  It is now 4 am, and did I tell you this just happens to be the coldest day in about a year.  Wind is gusting and it is cold, the feel like temp is 27.  Wearing shorts is not such a great idea, and a jacket would be nice.  Finally home, freezing, but home.  But the fun does not end; the dog has to go out.  I swear that dog loves the cold, just standing there with the wind blowing in her hair.  Finally 4:30 am and off to sleep.

Tuesday Jan. 3^rd

                Up at 7am and off to work.  Rochelle and I somehow work it out so we can both get stuff done and since Logan is home, still has headache, we are off.  We get home and Logan is not doing well at all.  Off to sleep he goes.  He wakes at 10pm in total pain.  This time we decide to take him to a different ER.  So we are off to the ER.  Arrive at ER at 11:15 and all hooked up again by midnight and Dr. comes in around 12:30am.  I am ready this time, thanks to Rochelle.  I have the papers from the ER the night before, a list of all his meds, past and present. I am feeling good.  So the Dr. tries a new cocktail of IV stuff.  We know it is not going to work, but we try.  It does not work.  All good, they have a bed, yep he is admitted.  So it is about 5:30 am and we finally get some sleep.  He is in a bed and I get the chair.  Most of you who read this know about the chair.  For those of you who don’t let me explain.  It looks like a chair, but it turns into a bed, kind of.  So I get this thing set up and am trying to sleep.  Oh yeah, remember earlier I mentioned that yesterday was the coldest day, not any more.  Today is the coldest day.  We are on the 5^th floor, wind is blowing, I am next to the window and the heat is not working.  Can this night get any better?  I have my leather jacket on, scarf, and 5 blankets, and I am freezing.  Logan looks like a muumy, but warm.

Wednesday Jan. 4^th

                Rochelle comes to relieve me so I can get some sleep, and get ahold of work to let them know I will be taking some sick days.  Get home, sleep till 2:30 pm.  Only woke up because that is when Parker woke up.  The cold weather is very hard for him.  He and I hang out, have a bite to eat.  I call Rochelle and make arrangements to take over.  I get to hospital around 7:20 only to find out valet is closed.  Really!  I convince the valley guy to let me leave the car out front so Rochelle does not have to try to find the car.  I come prepared this time, because Rochelle told me to bring a heating blanket since the heat still wasn’t working.  Oh yeah.  I also come with some Five Guys burgers for me and Logan.  In the meantime, Logan is getting no better.  IV’s pumpin, pill poppin, nothing is working.  So we sit, actually lay of the chair futon thing, too lazy to put into a chair.   Neither one of us can sleep.  The nurses come in all the time, checking vitals, replacing saline bag, giving drugs, always something.  Then she asks if I want anything.  So she brings me a half can of ginger ale.  Logan, well, he’s still not doing well.  So what to do?  Watch TV.  We watch a marathon of Full Throttle Saloon.  Probably would not be approved by Mom, but hey, we have to pass the time.

Thursday Jan 5^th

                Doctors start rolling in around 8am, actually just one.  Same old questions: how do you feel? Where is the pain?  Etc, etc, etc.  next the nurse, vitals, drugs etc.  then we get the group call, you know all the doctors in training.  They go over everything, again, new plan, let’s try this, etc.   off they go.  Not 5 minutes later the life specialist knocks on the door and tells us the clowns from the circus will be in the play room at 11am.  To which I said “you mean the cruelty to animal tour 2012 is coming by”.  She laughed and said the media is going to be there.  We said, that is ok.  Logan still not doing well.  Not 5 minutes later a senior volunteer knocks on the door and asked if we wanted a visit from a dog.  What is going on here, Clowns, dogs, media, is this a hospital or are they filming a reality show.  Still the drugs are not working and the doctors are saying the migraine is now a cluster or tension.  So I ask what is the deal?  I tend to get to the point.  So they tell us we need to think outside the box and the “New Age Team” needs to get involved.  New Age, what is new age?  Ok, at this point we will listen to anything.  Logan and I set up for the night, it is Clohe and Kim take New York a thon.  Logan and I have come to the following conclusions.  Kim’s husband, Chris is a tool, but Kim is mean.  We like Scott, he is not a bad guy.  Logan thinks he could be considered a family guy.  We follow that up with more nurse visits.   Rochelle calls with some info about B12, so I track the Dr. down and we discuss.  He thinks that may not be it, but will look into.  We chat about his schooling and he is off. 

Friday Jan 6^th.

                Really starting to get frustrated.  Logan is not getting better and they do not seem to have answers except “maybe if you were home you would do better”.  Seriously!  So the Dr. from last night shows up and says the “New Age Team” will be stopping by and the head Neuro Dr is also stopping by.  The next visit is from the group.  We hear the same thing we heard yesterday, I guess repetition is how they teach, who knows.  We show all the newbies Logan’s planter warts, they all seemed really interested, Dr’s are weird.  So they continue to discuss the case and one resident seems like she wants to say something but won’t.  Finally I point at her and say “hey you want to say something, what?”  she tells us and the group that oxygen may help.  What?  Oxygen?  The teacher Dr. says that is a good idea and we should try it.  So we finally have a plan.  In the meantime the head neuro Dr shows up and says we need get him functioning again and he needs to move around.  Yeah ok.  She then talks to me outside and asks if Logan is basically seeking attention.  Oh my.  So I have to go into the whole thing that he is not and he is a great kid, and so on.  She is satisfied with my answer and we go back in.  She learns of the oxygen treatment that will be given and, are you ready for this, she says “oh that will work, his headache will be gone in no time and he can go home”.  At this point I do not even know what to say.  If this is all it was going to take why did she not do it day one.  So the oxygen starts and sure enough the headache goes away.  I mean gone.  Why could they have not done this earlier?  That’s right, they need to make money and sell the drugs.  This is only my opinion and will refrain from saying anything else.  I ask for a script for an oxygen tank, and they gave it to me.  Trying to be proactive.

It was a long week, but at least the Dr’s worked together and figured it out.

I know this is long, but the best is yet to come.  The visit from the “New Age Team”.  They show up, I am sure totally excited because they get to do whatever it is they do because the “regular” Dr’s cannot figure it out.  So they come in and Logan says “I’m all good.  Headache is gone.  The oxygen therapy worked”.  Thinking this would crush their spirit, she says, “of course it did, but since we are here”.  Oh boy here it comes.  She starts talking to us about music therapy, aroma therapy, and acupuncture.  Logan and I just look at each other and smirk.  She asks us if we would like to try some music therapy.  We kindly agree.  This one lady pulls out a small harp, asks if she can sit next to me.  The other Dr. tells Logan how to breathe and the music starts.  She tells us we can hum along if we wish.  Logan is trying not to laugh, I am dying inside and the harpist starts humming James Taylor songs.  I am trying so hard not laugh.  I am biting my tongue, pinching my arms.  Logan looks like a dear in headlights, focusing on the door.  The other Dr. is touching Logan’s chest teaching him how to breathe.  At this point I have tears built up in my eyes, and the songs keep coming.  They finally finish the concert and the Yoga Dr. comes in.  I cannot make this stuff up.  She then teaches Logan breathing exercises.  My personal favorite is the Alternating Nostril exercise.   They finally take off and Logan and I start cracking up.  of course once they leave we had to go online and watch our favorite video, Yoga Girl.   I have attached for all to see.

Yoga Girl video  a must see.

 We then packed up and get out of there. 

What a week.

A Day in the Life of a Child…Our Child

Friday, December 30, 2011...Tomorrow is the big day!  First infusion of IVIG.  Intravenous immunoglobulin (IVIG) is a blood product that is extracted from pooled human blood plasma from thousands of carefully screened individuals.  This therapy is being administered in hopes that it will help strengthen Parker's immune system and provide protection.  It may need to be repeated. 

As much as I prepared to “sleep” prior to our trip up to Shands Hospital, such was not the case.  I was in bed by 10:30…listened to my hubby and Logan sneak in quietly…11:45 still awake…then sweet slumber…only to see the glowing numbers on my clock at 1:00, 2:10, 3:17, 3:35, 4:08, 4:15, 4:25, 4:30, 4:35…up and in shower prior to the 4:45 alarm.  5:35 on the road.  7:40 nebulizing Parker in the car prior to heading up to infusion room.  8:00 vitals, port inserted and meds starting at 8:40.  The infusion room had only one other child (who happened to be a little guy with AML that we met during one of our hospital stays).  Smiles and waves exchanged as us moms looked sleepily at each other.  We got our coveted corner today, which is so nice since we will be here all day.  Two more kids arrive. And by 9:15 the first little guy is already leaving…

All is still and quiet in infusion room and I watch the sunlight peek through the window blinds.  So thankful for the quiet (before the storm)... So often we enter to screams of the young children protesting their IV insertion for fear it will not work the first time and the nurses will have to dig and prod for their sweet little vein.  Parker’s sweet little buddy, Sadie, was with us when we were here two weeks ago and it took 4 tries to get her IV started.  Pure torture to hear those pleading cries asking if they could see red in the tubie (meaning blood return, good vein).  This is why we got a port for Parker several months ago…to end the torture every two weeks.  And as scary as a port can feel and as much as it makes us feel like we are in this for the lonnnnngggg haul, it was probably one of the best decisions we have made during this journey.  His veins were done and even when they could get it the darn scar tissue would bend the IV cath and push it out.

9:30 pre-meds infusions completed (acetaminophen, zofran, solumedrol, benedryl)…now the actemra is coming on board.  Two weeks ago, after 9 months of actemra at 500mg -10ml/kilo, Parker was increased to 600 (this is the max he can get). He is also still getting enbrel each week in addition to the actemra.  Even though he was very sick these last two weeks with an upper respiratory infection and needing to be nebulized, these were the first 2 weeks we didn’t see any systemic rashes nor fevers.  This was huge.  Don’t get me wrong…he still has multiple symptoms:  visible vasculitis on hips, thighs, back of knees, ankles and feet; rough skin on face; minor peeling at finger tips; very pale; swelling and intense  pain (10) at neck, lower back, hips (sure sign he is sick), ankles, toes, wrists, fingers, jaw, chest/ribs;  and the pink finger tips all persisted.  All signs that his disease is hiding out…BUT, we are celebrating that he had no fevers or systemic rashes…we must celebrate…that is the longest stretch he has ever gone with those major systemic features gone since onset in 2008.  So we continue to HOPE…

This disease if really hard…it sometimes feels very aggressive and as with many diseases and disabilities there is a “spectrum” of severity.  My husband and I have been processing lots of information these last two weeks.  It is really hard to admit how severe Parker’s JA truly is... but it’s pretty severe.  As hard as we fight it, it keeps fighting right back.  It’s almost like it out-smarts the drugs.  And the drugs…there are sooooo many drugs (I think we are at around 29 or 30)…and some of the drugs are for drugs.  And then there is the worry of what exactly are the long-term effects of these many drugs that the medical field is still trying to understand.  And it’s interesting how some people judge us (and other families of kids with JA) and our decisions around these meds…but if they understood the alternative and if this was happening to their child, I am absolutely sure they would do whatever they could to stop the progression of this disease.  And it’s important that we aggressively treat.  Part of the reason Parker has been so difficult is because he wasn’t aggressively treated in the beginning and the disease has had somewhat of a “snowball” effect on his little body.

So, just to get everyone up to speed who has just begun to follow Parker’s journey.  Parker has not only systemic onset of juvenile arthritis, but he also has overlap syndrome.  When trying to find info on this, there really isn’t much out there.  So two weeks ago, I had a long talk with Parker’s doctor about this.  She said to look up mixed connective tissue disease because it’s very much like that disease, but to have MCTD there is one specific marker in the blood that makes the difference.  Otherwise the symptoms and issues are much alike.  For Parker, he seems to have bits a pieces of variety of autoimmune disease, thus this is another reason why he has been so difficult to treat.  Parker presents with severe allergies/asthma, myositis, vasculitis, and some psoriatic JA-like features in addition to having systemic JA.  And there is also the concern about the frailty of his immune system.

We have been given a few new options and are likely to combine some treatments.  First, we have already increased his actemra (IL- 6 inhibiter) and added enbrel (TNF blocker) to the mix.  Now there is the addition of the IVIG in hopes to build up his immune system…his diseases and the multiple immune suppressing medications have influenced this decision.  We also discussed using anakinera (kineret).  This is an IL-1 inhibiter.  Typically this is a shot that is given daily, however they are trying to set up home health care to come in and teach Michael and I how to infuse this daily through Parker’s port (another huge blessing that he has this port because as a shot, kineret burns worse than any drug out there and has to be given daily).  Finally, the doc talked to me again about Parker taking part in the RAPPORT study.  The drug that they are testing is also an IL-1 inhibitor called rilonocet, but is only a weekly shot verses daily.  There was concern though if he would even qualify now that he has overlap syndrome.  He would qualify with systemic JA.  However, my husband and I are VERY concerned about the risk we might be taking if he did this study.  One, we know that he has had some issues already with his internal organs (lungs, lymphs, stomach, and heart)…there is concern that if he got the placebo then we would be putting these organs at great risk and we have spoken with our insurance company and they would NOT cover any complications due to the study and he may even lose coverage.  That is a risk we feel we cannot take.  The study is in its last 6 months of trials.  So, we will wait and if the drug gets approved in the future then we may try it later.  For now, we will see what the IVIG does and hope it works well with his other meds.

10:40 – Actemra is officially done, now methotrexate is going in.  So nice to have one med given here so we don’t have to give it at home every other week!  Methotrexate makes Parker incredibly nauseous and although he gets zofran at home with it …it is just not as good as getting IV zofran.  And today he will get an extra dose of the zofran prior to leaving due to the IVIG. 

11:05 – It’s time…IVIG…praying…hoping….For all the other infusion room buddies out there…the infusion room symphony has begun…hum of multiple TVs/video games, mumbling voices, shuffling feet, metal swish of curtains opening and closing on their tracks, moms “hushing “, synchronized beeps of IV pumps (those beeps enter in my dreams), and the little ones crying…This is why Parker loves his headphones.

11:30 – I lean in and ask Parker how he is doing and he pushes me away…not wanting to be touch nor spoken too…”Just leave me alone.” 

1:15 – Friends arrive and we get our first brief smile of the day J  and then sleep…after a break in the IVIG to administer more benedryl and toradol.  4:00 - IVIG done, saline push, and more zofran on board for the ride home.  Got lab results prior to leaving …and looks like the doc made a great decision in administering IVIG because both his IgG and IgA levels were significantly low.  Here’s HOPING…again…  So Parker could have a severe headache for the next two or three days.  For the next 48 hours we are to give him acetaminophen and benedryl every 6 hours.  5:00 finally back in the car heading to home sweet home.

Accepting the Unacceptable

My thoughts are all over the place these last few days…I have determination, love, family, faith, hope, resilience all at the same time as feeling incredibly frustrated at the fact that no matter how positive I try to be my son is still very sick.  We follow directions.  We pray.  We provide. We chart.  We problem solve.  We celebrate simplicity.  We marvel at the good will of our friends.    Yet, we still have a very sick child.  No matter what we do, his disease continues to persist.  We have very short moments of success only to be faced, yet again, with set-backs.

Each morning, Parker wakes and we assess only to come to the realization that he is not able to go to school.  He wants to be at school more than anything. He really loves his service learning class and art because he says he can be himself in those classes and express himself.  He misses his friends.  It’s breaking my heart over and over.  He is so very far behind and yet, when he is awake enough and able to breathe deeply through his continuous pain, he does what work he can and makes fantastic grades on the work he completes.  There is just so much work.  He has an Individualized Education Plan with an altered schedule and workload for the days he goes to school.  But he also takes two virtual classes and that load is not reduced at all.  It’s just done at his pace…which is s-l-o-w…We have not been given the same options around home schooling that other families around the country have had.  Our one and only option is to take him out of his advanced classes and do all regular ed…and are you ready for this…all classes are at set times and over the phone with a class of many other children who are also on the phone.  Not the best of option for a child who needs to often dictate, needs to sleep lots, and learns best visually (not auditory).  Plus if we do any form of home bound, he loses his spot at his school, because he is in a charter school.  So he would not have his school community nor friends any longer.  Can you tell that school weighs very heavily on our minds?  Parker is a very social child and our fear is that if he didn’t belong to a school community he will lose his drive to fight this disease.

Then there is the medical …where do I start.  Something medical is happening every week and usually more than one event takes place each week, sometimes multiple in a day.  Parker has weekly occupational therapy (OT) and physical therapy (PT).  And If I reflect on just this week and last week…let’s see…multiple shots and meds, blood work, an infusion treatment (every other Fri), gastro appointment, counseling, and oh…we got his new wheelchair!  That is the biggest highlight.  He has also been fighting a toe infection (5 weeks now), parvovirus (2 times in a row), and he wears wrist and ankle splints nightly.  And as draining as all this is, we would do all of it and more to find a cure.

A cure…our constant hope is a cure…today I feel like a cure is far far away.  Today, I feel like we have to accept what feels unacceptable.   Parker’s in 10 pain again…has been for 2 weeks.   And now he has overlapping syndrome…whatever that means because I can’t find any info of use on this.  He has joints swelling and  they arehot again…in fact his neck is so flaring that the temperature on his neck today was 101 degrees…but his forehead was 97 (he is usually 95 or 96).  And his fingers and toes are peeling…yet again…and still don’t know why that happens.  The last 2 times his toes and feet peeled he ended up in the hospital…so yes, we are scared.  We just want to understand this disease…we want to know the connections between all these crazy symptoms and what to expect…but all we seem to be able to expect is the unexpected…there is no predicting.  This disease has not been easy, even his doc says that…and we hear that he is flaring either because he got sick (he gets sick a lot) or because of the weather (whatever) or because of school starting or doing too much (but he doesn’t go much nor does he do much)…Parker is a fighter, but so is this darn systemic JA…it’s one big bully and we don’t like that big bad Arthur!  Parker is scared again.  

Balancing on the Newest Wave of HOPE…

Balance…when you look up this word you see synonyms and definitions such as:  equilibrium, steadiness, stability, poise, assess, weigh, compare, evaluate, consider…

I am someone who tries to maintain my “sense of balance” in both my professional and personal life.  I strive for balance because it helps be “feel” stable.  When I am “balanced” I am happier, can achieve more, and am better connected with my loved ones.  When I am balanced, I can easily “give to others”, which I love to do.

If you know me well, you know that I also try to insert a balance between the attention I give to my children and what I expect from my children.  Balancing my affection, chores, time, and family contributions, etc…

And then there is a balance with my husband…Balancing our time together, tasks, and parenting.

I think, for the most part, our family was pretty balanced prior to our son’s on-set of his systemic juvenile arthritis.  I am thankful for that because I believe that our ability to find balance has truly blessed our family with the ability to cope, comprehend, problem solve, and continue to love.  But it has also allowed us to ride the waves…

My life is no longer balanced.  Our family life is no longer balanced…at least not in the sense of what our family use to be.  And certainly not who “I” use to be.  I have known this for some time, but I really REALIZED this, this week.  There is one person in my life that, unknown to her, has helped me realize this reality because she touches my heart professionally, as a friend, and as family.  When I process aloud with her I cannot stay balanced.  Even in typing this and recalling our interactions, I am drawn to tears.  She knows me fully, through all aspects of my life… she knows that I can ride the waves but for some reason, when I am with her, the wave comes crashing down with a huge splash and disperses and I temporarily lose my balance.  She can see the storm in my life…and I have trouble focusing on just one aspect at a time…probably because each decision influences how I remount that wave and balance.

I do feel like we are on the right track with Parker’s treatment.  For the first time, we have seen powerful progress…but I was reminded this week how quick things can change.  And I am keenly aware of how fragile he is.  We had a set-back this week and it really hit me hard.  I panicked…right in front of my dear friend.  I had to walk away to the privacy of my car and I lost it.  Completely and fully lost it.  I have been trying so hard to grab onto our moment of progress…to stay positive and optimistic…Parker’s pain had decreased, his enthusiasm in his voice had returned, his attendance at school had increased, he was catching up with homework, he was moving better and we were balanced again.  My husband and I were getting tasks done, we were connecting with each other, we were catching up, and able to focus better on work.  Logan was chitter chattery, sharing about school, dancing around the living room, talking about his girlfriend… We could all spend more time with each other, and he loved seeing his brother feeling better.  All of us riding the wave together and fully enjoying our equilibrium, steadiness, stability, poise, and ability to assess, weigh, compare, evaluate, consider…  and oh, did we begin to “consider”…

But rather than riding the kind of wave that slowly begins to roll into other waves and eventually becomes that nice calm bobble where the sunlight bounces joyfully…we crashed.  I crashed.  And suddenly I was drowning in my emotions.  Parker’s pain was increasing, his hips and knees were flaring (these joints only do when bad stuff is about to happen) and intense pain increased in his usual joints…ankles, back, neck, wrists, shoulders, hands, and wrists.  And the fatigue was back with a vengeance.  He was back to missing school.  And yet, we still went to OT and PT this week and both therapists could see the change.  And as the PT was working with him, he started a marble like pattern all over his body.  It was so bright and intense that she actually stopped her therapy and sent us home.  He then got a red rash on his cheek and chin and slowly the rash and marbleing went away.  He was left with a rough feeling on his skin across his chin line (nothing you can see, but it feels like a man’s rough beard and is still there).  This hit me hard because he had his enbrel, but he was not bouncing back like the weeks prior.  All I could think was his disease was going systemically through his body again.  I was scared.  And I think that Logan was scared too…he got a migraine this week, as all this was happening.

Parker had his infusion yesterday and we met with the doctor and nurse practitioner.  They threw me a life preserver, as they explained that they really felt like Parker got an infection and most likely it was parvovirus (a.k.a. fifths disease).   It was not his disease going haywire again but rather being triggered by the disease.  I was so very relieved.  I know that might sound crazy but I was...because what it meant is that we were still on the right track with his meds.  I did ask if he should even be going to school and they said yes.  But they are carefully tracking his blood.  If his counts go below 500, then they will immediately let me know, so that we can keep him home.  He needs school…it’s his “balance”…

But we also discussed some other things…they felt that the Actemra (IL-6 inhibiter) has done a pretty decent job with some of his systemic symptoms and issues.  It has lessened his rashes and fevers.  His blood work also looks tons better.  It has also helped with his horrible fatigue.  However, it has not done a good job with controlling the inflammation and pain; thus this is the reason for the Enbrel (a TNF blocker).  So because we have done a good job at stopping the IL-6 pathway, the systemic JA (a very smart disease by the way), started revving up and going down that TNF pathway even harder.  By blocking that pathway too, we are finally seeing the swelling and pain decrease.  However, both these biologics compromise his immune system.  The doc shared yesterday some new news that once again has begun to boggle my mind.  She thinks that Parker is starting to have (or has had) overlapping syndrome…I am still trying to comprehend…but he may have more than one JA disease…they pointed out that he has symptoms of other JA diseases in addition to systemic…like the myositis (weaking of the muscle enzymes)and the psoriatic issues (nail pitting/lines and possibly now the roughness in his skin).  I don’t know where this particular wave will take us but we are adjusting meds again…

So I go back to my sense of balance…my work is definitely not balanced right now, in fact I am having to decide what do I REALLY want to do, while keeping in mind that my choices will affect the balance in my other parts of my life.  And balance between my children definitely doesn’t mean equality but rather that we, my husband and I, are present and connected and helping them when they each need it most.  I know some probably think I should stop working.  I have gone part-time, but I need to work.  For several reasons:  one, for our health insurance; two, for the income to pay for medical expenses; and three, for my “sense of self” and to give back to my community.  But I do have some choices to make…

So, I reflect today…And I thank my friend, my colleague and my “family” for allowing me to just “be” in her presence…  I was drowning a bit but today I have surfaced and I am riding a new wave of HOPE…As I get better and better at “balancing”.