Peace, Power, Purpose…It’s Within Us All

Well, we haven’t blogged lately…partly because things have been so crazy in the Lentini House, but also because we have really been trying hard to look at the bright side and to stay positive through all our struggles.  Somehow, by writing, it feels like admittance of how hard things have been.  But we also realize that for many, reading about such difficult times is not very “uplifting” and is probably draining on our family and friends.  But our reality is we are definitely being challenged lately.

We are so fortunate to have so many people who care about us and we do know that you want to know what is happening…so I will try to explain as briefly as I can but it’s a lot.  Since this is “Parker’s” blog, I will start with him.  As much as we didn’t want to admit it, Parker has slowly been declining.  I think we were hoping that the IVIG would be the little extra something that would bump everything into gear.  It has helped.  We are seeing his immunoglobulins improve.  And with this improvement he is better able to fight off infections.  However, the actemra (the biologic infusion he has been on for about a year) has failed him.  His vasculitis is horrible, pain is through the roof, swelling is over the top, skin coloring is pretty bad, rashes are back, and he is behaving like he is having fevers with sweats and chills but temp is hanging between 96 and 98.4 degrees.  But actemra suppresses fevers ( a scary thing because then you also don’t have warning signs of illnesses).   

Day 3 and He Still Can Find His Smile

Last Friday was Parker’s regular infusion day.  He was doing so bad he was admitted into the hospital.  He is still in the hospital.  Because the actemra has now officially failed, we must change biologics once again.  He has now tried enbrel, humira, remicaide, actemra, and then a combo of both actemra and enbrel together.  All have failed.  People this is why we desperately need more research! 

We Are More Thankful Than Ever That We Decided on a Port for Meds

Today, the doc is moving to another class of biologic drugs called IL-1.  He is being given kineret (also called anakinera).  He just got his first does.  She says that some of the systemic features of his JA will slowly improve with each dose, but the decreased pain may take longer.  He is going to get 2 doses a day infused directly into his port by his loving, caring, and a little bit scared momma.  This means that his port will be accessed 24/7.  One of the reasons we have moved to this drug is that we have exhausted most options.  Another is because his doctor really wants him to be in a study.  He can be on kineret up to 4 days prior to the study.  We are highly considering this study and I am currently talking with insurance about this as being a very important option for us.  The RAPPORT study is also with an IL-1 biologic (Rilonacept) but it only has to be given 1 time a week.  It is in its third trial study; they are seeing great results; and it is a drug that is already FDA approved for intermittent fevers which is a huge feature of systemic JA. 

It's hard to see in this picture but his ankles were about the size of
tennis ball.  There was also redness and swelling above his little toe.

This was one of his ankles the next day.  A little less swelling, but vasculitis is
evident and he kept getting rashes.  There is a bit of a rash here
above his ankle.

Swollen little hands, with red fingertips, grey middle segments
and white hands.  (Picture doesn't show clearly)

Rashes on arm, again it's not clear, but there were pink lines.
Rashes come and go daily again.

Systemic JA is very very complicated and scary.  Children can die from this.  It attacks not only the joints but internal organs.  Parker has already had complications with his lungs, lymph nodes, stomach, and heart.  Michael and I are not willing to let this disease take over without everything we have to fight with being utilized.  We also will continue to advocate for each and every child with JA and related autoimmune diseases.  The world needs to know how desperate all families are for a cure.  No child should ever have to endure intense pain and no parent should have to observe powerlessly and with constant worry.  We pray that the time for a cure is soon!  We need to the cure now! 

A Gaspirilla Krewe visited and
handed out beads to Logan.

In addition to our battles with JA, our other son, Logan, was hospitalized multiple times with severe migraines.  I know many out there reading this will be thinking about his well being and the stress of JA on our family system impacting Logan.  Of course it does!  How could it not?!  But we are pretty sure that these migraines were a combination of triggers.  One, he’s had migraines (that have been under pretty good control) since he was 5.  More recently, the combination of JA stress with his brother, puberty, and the IB program have certainly triggered this 7.5 week long intense migraine.  After a huge scare that this episode could have also been autoimmune related (he is ANA positive which is a marker in the blood) and thus ruling out vasulitis of the brain, we are very relieved that a combination of meds is now controlling his migraines again.  He is also going to be in biofeedback therapy soon which we are sure will give him some great coping tools.  Then hopefully we can also wean some of the medications.

Logan's Spinal Tap

Then there is my health…Without going into too much detail because we are still trying to figure “me” out, it is looking like I have an autoimmune disease.  The rheumatologist that I have been seeing for about 8 months now thinks it is a connective tissue disease.  I wasn’t going to talk about it on this blog, but then I got to thinking about how brave Parker is being and if I am going to be “true” about advocating, I thought it was time to share this news.  Actually, today was going to be the day that I talked to the doc about my own treatment, but that is now put off a bit due to Parker being in the hospital.  But as you can see, there seems to be a genetic link with all this autoimmune stuff.  I feel stronger than ever that this autoimmune stuff needs to be figured out now for our future generations of children.  I recently had an ER visit myself and ended up being admitted.  The intense pain that I felt hurt me emotionally more than physically because all I kept thinking is that my child is in this kind of pain every single day and I cannot seem to stop it for him.

Michael is the rock in our family.  He helps us all “keep it together”.  Thank goodness he is healthy.  His love, support, and understanding means more than words could ever portray.

Today, we have a glimmer of HOPE again as we journey down yet another path.  Parker also saw his karate teacher that he met in the infusion room.  He had class on the floor today and Parker went to part of it.  We learned to bow with peace, power, and purpose.  Today we worked on building peace within us, using the power within us, and utilizing our purpose…to teach the world. Please, if you are reading this, consider supporting us and other families battling autoimmune diseases.  Of course juvenile arthritis is near and dear to our family’s heart.  We invite you to join our team, Parker’s Purple Playas Pounding at JA, as we walk on May 5^th.  It is free to walk with us and you simply need to go to this link to sign up:  Click to link to Parker's Team Page

If you are not local, consider joining your community’s Arthritis Foundation’s walk.  And of course, donations are also needed as they help fund research, education, and camp for our children.  You can also support us in another way; join us virtually on International World Arthritis Day on May 20^th.  For more info go to: World Arthritis Day - Click to learn more   

And finally, you can support us by continuing your encouragement, prayers, positive vibes, and by sharing our story and educating others.  Only when the word spreads will there be enough awareness to “teach the world” and promote research for a cure.  Be there for the future of our children and their children.  

Much hopeful love, the Lentini Family

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.

Our Family Stands Together

Today I take the leap…and write.  Lots has happened but little has changed…at least physically…medically.  But emotionally, our family is stronger…and getting better at dealing with the immense emotions that sometimes fill us.  We want to stay positive and hopeful… we feel some people are slowly drifting away from us.  We understand this, as we can barely handle what we are enduring…but we must and we do.

The doctor has confirmed (although we knew) that Parker is severe.  As hard as it is to hear that your child’s condition has no cure (yes we knew this too)…but to “hear” it aloud…hurts to the core of our hearts.  Yet, Parker’s doctor spoke with compassion, determination, and love.  As real as she was about the enormity of what we are dealing with, she paused to be a real person and for that I am forever grateful.  We are in this together…Our goal is to slow the progression of both the vasculitis (http://www.webmd.com/rheumatoid-arthritis/guide/vasculitis-treatment) and the systemic effects of the JA.  Just to catch those up to speed who don’t realize what this mean.  With the systemic effects of this disease not only are his joints at great risk, but also his internal organs (heart, liver, spleen, and eyes).  We also talked about his physical activity.  We agreed to let him try to be physical, even if we know the consequences…because if Parker is willing to deal with the consequences then so are we.  After Parker plays physically, he usually is in immense pain and his joints, especially his ankles, balloon up and he sometimes needs an intermittent infusion/meds.  But we all feel strongly that he needs to “be a kid” whenever he can.

We will do absolutely everything we can to stop the progression of his JA.  The doctor even mentioned a child who had a whole bone marrow transplant but we are not anywhere near going down that road.  The good news is that there is a new study through CARRA called RAPPORT (drug: Rilonacept) (http://clinicaltrials.gov/ct2/show/NCT00534495) and it’s for children with systemic JA (http://www.medicinenet.com/stills_disease/article.htm).  Parker’s doctor is working on getting university approval right now to be a part of the study.  This is huge; it means that there is still something else to try.  But it is also incredibly scary…however; every biologic drug we have tried so far has been scary. 

There is some really good stuff also happening in our life.  We got a scholarship to go to the Arthritis Foundations Juvenile Arthritis Conference in Washington DC.  This is a great opportunity to meet other families and to learn more about JA.  The lead principal investigator (http://www.jrheum.com/subscribers/05/05/763.html) of the RAPPORT study will be at the conference and we will have the opportunity to hear him present.

 

Parker also went to camp last week at Boggy Creek (http://www.boggycreek.org/).  Boggy is a camp for children with serious illnesses.  It is one of Paul Newman’s “Hole in the Wall” camps.  What an amazing place!  I am hoping that Parker will blog soon about his experience there.  In some ways, this experience showed him how involved he really is…sadly he was teased by some children with hemophilia (they joined children with JA that week) because he had to use his wheel chair and they didn’t understand why sometimes he needed it and other times he didn’t.  He also needed an emergency infusion by mid-week.  While getting his infusion, one of the counselors stayed with him and played games.  Thank you Trent!  You were amazing with Parker!  Parker made it at camp all week.  He made incredible friendships and he knows that he is not alone in his battle.  He missed being there immediately.  While at a family party the day we picked him up, he started to cry because he missed the people he met at camp.  Thank you Boggy Creek for giving my son a gift like no other.



Parker's Cabin Group at Camp Boggy Creek



Last Friday night, the Make-a-Wish dream team came to our house.  Another bitter sweet moment for us…Parker could not maintain the conversation.  He had to go to bed because he had his Actemra (http://www.actemra.com/actemra/rheumatoid-arthritis.html) infusion that morning and it totally wiped him out.  The 2 beautiful women who are Parker’s wish granters were so sweet and excited and it was fun to “dream” together.  We will let you know what comes of his “wish”.

So again, I apologize for the length of this blog…I know that I should probably blog more frequently to avoid this.  But honestly, this is so hard for me because I want to write about good things…who wants to only read about negative stuff…I know it can be draining, but imagine for a moment…”living” this.  This is our reality.  Life continues on all around us.  We watch the hustle and bustle of folks’ day-to-day happenings.  We continue with our daily tasks:  work, meals, chores, and a little bit of fun here and there.  Yes, even we have some fun.  And then we have all the doctor appointments and we live at the pharmacy.  Seriously, we are there 3-4 times a week.  And then there are all the daunting tasks that still need to be attended to, all of which will take “time” in our hustle and bustle:  physical therapy, dental, extra eye appointments, new eye glasses, and ortho appointment…oh wait, and 7^th grade immunizations (but they can’t be live vaccines…).  Can I just say, thank goodness that school is out for the summer!

Of course we also try to balance all this with fun stuff for Logan!  He just finished row camp in prep for joining the high school crew team.  He is really gifted at rowing and loves being on the river!  So in spite of all the difficulties in our journey we have many gifts…two amazing boys with a fabulous relationship, new friendships (with our JA families), a new car (the van could no longer make the journeys to the hospital), and both boys made straight A’s.  WOW!  And then there are the beautiful flowers in our front yard …that remind me daily that the world is full of good....while their blooms stretch upward towards the shining sun and their supportive roots are planted firmly in the soil so they stand up strong…our family is standing up strong! 

Pounding JA with Actemra!

Where would we be without our JA friends?  They truly understand how difficult our days have been and have periodically checked in with us to see how things are going.  We were showered with their support this week, as we endured our wait for medical results.  We are so appreciative.  We had a hard week not only with Parker, but Logan was also really sick.   I too was undergoing many medical tests; and our dear dear friend has been very sick and is in intensive care.  So for those of you who called, sent messages, and the very special person who sent a very lovely card…we thank you all from the bottom of our hearts. 

We are happy to report that Parker does not have JDM, however, he does have vasculitis in conjunction with his systemic JA.  To learn more about this condition, here is a website that explains it:   http://www.webmd.com/rheumatoid-arthritis/guide/vasculitis-treatment

We also found out why his jaw is giving him trouble.  There is little space nor cartilage between the joints on both sides of his jaw.  His rheumy wants to keep a close eye on that; and we are going to an ortho for a special splint night guard.  We also found out that many of Parker’s blood levels are still off and he is quite weak.  Thankfully, I found one pediatric physical therapist that takes our health insurance and so we are now on a wait list to resume PT, 2 to 3 times a week. 

As many of you know, we have had some difficulty around approvals with our health insurance.  This week our primary doctor (I just LOVE her!), recommended that we call our insurance and ask for a case manager because she believes he would qualify since he has a “severe disease that is difficult to manage”.  She even gave us the direct phone number.  Who knew we could do this!?  I will let you know how that goes…

As for me, we found out that I don’t have lupus (both my primary and my allergist had this concern).  We are very thankful for this news.  I do have another small goiter on my thyroid, but we just need to continue to monitor it.  I did find out that I have a severe vitamin D deficiency (already working on this) and….ready for this…significant arthritis in both shoulders and hips with the start of osteoporosis.  Parker says we are still two peas in a pod (he has always said this about our allergies and asthma)…but I know that my pain has been nowhere near the level of his.

As for Logan, he is doing much better.  Still coughing a bit, along with Parker, but we think both boys are finally on the up-side of this infection.  Thanks again to our aggressive primary doctor who quickly started treatment.  And as for Michael, he is taking care of all of us…and I love him dearly for that.



We have successfully completed Parker’s second round of his Actemra infusion.  We truly think it is starting to work.  We hear joy in Parker’s voice again and although he still is requiring tons of sleep, he has more alertness when he is awake.  His swelling also seems to be going down and he appears to be moving smoother.  He is still in pain, but we are so incredibly hopeful that the Actemra is doing its job.  We will continue to go back every 2 weeks for infusions.  We think we are beginning to see light at the end of that tunnel; and as our friend WilmaSue has joked, we hope it’s not just a kid down there waving a glow stick.  But if it is, maybe some day soon Parker can join that kid!



Parker is the Spring 2011 Walk Honoree for Tampa!  To Donate visit:
http://2011awtampa.kintera.org/faf/donorReg/donorPledge.asp?ievent=424537&lis=1&kntae424537=8FE6E8AD54324E3782E75E22155F5C86&supId=308384465



First Round of Actemra and MRI

 

So we headed to the Gainesville for our first Actemra infusion treatment on Friday…but first we made a very important stop.  At our last visit we met the medics who fly the ShandsCair and they invited us to come see them at the helicopter pad.  It was one of the most amazing things we have ever done.  These men are so incredible.  They helped support Parker so he could walk into the hanger and then they lifted him into the front of the helicopter.  They totally engaged him and then I saw the biggest smile I have seen on Parker in the longest time as they told him they were going to drive the helicopter out of the hanger, with him in it.  Tears of happiness streamed down my face as Parker road backwards into the sunlight.  They were so compassionate in taking the time to make this visit so special.  Their heartfelt time was truly a gift that he and I will cherish.  I thanked them for making this trip so incredible.  Simple acts of kindness are so beautiful.

As many of you know, Parker’s doc changed his infusion treatment Friday from Remicade to Actemra.  We were concerned that they would want to cancel it because Parker had the starts of a sinus infection but we got enough antibiotics in him prior to his infusion and he wasn’t running a fever. Whew!  The first infusion started with pre-meds. Then he got the Actemra…no reaction and so that’s a success so far.  We got there at about 1:45 and left about 5:45.  Faster than Remicade; that’s a plus.  And we stayed an extra half hour to keep our little friend Sadie and her mom company; since they were the last 2 in the infusion room.  It was so nice to connect with them and the kids enjoyed each other so much that we went to dinner together.  Us, moms also got a chance to connect.   Sadie gave Parker "Happy" the hippo.  After dinner, they came back to our hotel to swim...but it was too cold. So Sadie's stuffed dog, Lemondaide, met Parker's tiger. It was a nice end to the day.

I had the chance to talk with the doc and PA and they helped me better understand what we were dealing with.  Parker has probably had systemic JA for some time and they still think he also has psoriatic JA also because of the nail pitting.  They are going to keep a close eye on his blood levels and symptoms, along with the joints and organs.  They also explained that his blood work shows weird patterns and that in combination with some of his extreme muscle weakness and blood vessel patterns it is leading them to do further diagnostic tests.  One of the glaring concerns is his CRP numbers.  He had a CRP of 79.6 and norm is 0 to 4.9.  They said that this is a big inflammation marker.  They also feel that his platelet count is on the high side.  And his kidneys are dry (proof that he needs to drink more).  So they explained that they are hoping the MRI will give them some more answers.  They admitted that Parker has been a challenge and the doc feels that what is going on with him is rare.

Parker and I both had a hard time sleeping that night in our unfamiliar hotel bed.  I am sure because we were both anticipating the next day, but also because there was a dog barking next door.  But when morning came, I gladly awoke to face the day.  I let Parker sleep…he was running a low grade fever.   When he got up; he was all about the buffet.  He loved his eggs and waffles.  He is so funny…he thinks buffets are the best thing about hotels.  It’s the little things that just make me giggle these days.

We then headed over to the Butterfly Garden and the History Museum.  We had such a great time together.  Two butterflies landed on each of us; so we knew we were going to have a good day.  What a lovely garden.  A must see.  Parker took a gazillion pictures.

The MRI went well and I thank the doc because she had him take benedryl and morphine prior to the scan.  They scanned his pelvis and legs; then they repositioned him and did his jaw.  For the final scan, a crank was placed between his teeth and his jaw was slowly opened, until it hurt.  He went back in the tube for the final scan with his jaw locked in that position.  That moment was hard for me to watch.  I just couldn’t hold it together any longer.  As they did this last scan, I silently sobbed in the corner, fully aware that I had to pull it together before he could see my face.  I am so very proud of him.  The tech said that most adults can’t do that test without protest and he held perfectly still.  She didn’t have to rescan anything.  I do think he was determined to spend as little time in that thing as possible…he is so resilient.  We had to bring in a non-magnetic wheelchair to get him off the table to his wheelchair in the hall.  He almost fell in the transfer to his wheelchair but he did it.  We were done!  The good news is the tech said that she was sending the pics over to the radiologist to read that day so the results would be waiting for the doc on Monday.  They did say they would probably also get an ortho consult and that might take another day, but that means we may know Monday or Tuesday if he has dermatomyositis and/or vasculitis.