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. 



Parker Shares What JA is Like

March 16, 2011

So I am writing today to try let people understand what arthritis is like. Now just let me tell you it is not fun; it is painful.

For example, look at this picture...

Pain-zilla!





To see the vessels and the pain in my back angle the screen.



Also for optimal view, angle the screen.

Now for those doctors that say, it was all in my head; look at this. Bet you don’t think it’s in my head now.

I also have to go through a lot of tests along with the pain.

For example, look at this.

Not fun.

And for all my friends who say I’m lucky because I don’t have to do all the homework and school work. Well their wrong. I have to do all the work they do but while I’m in pain.

 

Parker's Second Blog

March 14, 2011

Today, when I woke up, my legs buckled under me and I couldn’t stand.  It’s been a scary day; so I decided to blog about something good.  So now look at this picture!

Isn’t it funny? When we were at Shands Hospital in Gainesville a week ago, all the nurses dressed up as gauze super heroes. Jeanette, the one on the top left with glasses and curly hair, said she thinks she is allergic to the gauze. She got all rashy where she had put gauze on. Then nurse Kim (who by the way is pregnant) they call the dictator because she is bossy. Soooooooooooo I said since she did not dress up as a super hero, she is the evil super villain THE DICTATOR! Da da daaaaaaaaaa! On a side note isn’t that gauze cool.

So this is my friend Mark. He has arthritis too. See how he is all dressed up in Elmo. Red Elmo shirt red, Elmo hat, and even red shorts to match it. It’s cool, isn’t it?

(Sorry the picture has Jello covering his face. He did not want me to take a picture of him, but I snuck one in.)  

OK, now look at me here. Blue Cookie Monster shirt, blue Rays hat, blue shorts, and even blue shoes (you can’t see the shoes and shorts but they were blue). Now guess when this picture of me was taken? 1 day… 1 day after the one of Mark. And guess what? I was going to where this outfit the day I was with Mark, but my dad said it was too much blue. Now how cool would that have been. Me and Mark in matching Sesame Street outfits.  I call it “Facebook profile picture worthy”. But I have a pretty good soon-to-be Facebook profile picture.

Look below.

Now how cute is that? That is me and Emily. She is just like me but in girl form. I love her. She is like my new BFF.

"Arthur Itis" Leads Us Down a New Path...

Here we are, one month later, and we are taking several twists and turns along our journey with “Arthur Itis”.  Saturday, our path took us to Orlando to our first JA Family Connect event.  We had such a wonderful time with our newfound JA Family and met wonderful people who all shared our acquaintance with Mr. Arthur Itis. 

Logan had so much fun playing with all the itty bitty kids (he is definitely his mom’s kid…loves those toddlers and preschoolers)!  He even got to meet some siblings going through the same experience as him.  Most of them were girls, but he was just fine with that :O).



Parker Gets His Certificate



Parker was such a trooper.  He played for a bit and even won a contest and was thrilled when he won a Colby video cam (much like the Flip Cam).  He was also so touched when he received a certificate for his hard work with the Jingle Bell Run/Walk and for being the number one fund raiser for Tampa and number four in the state.  To see his pride when he received that was a priceless moment.

Parker said that this was one of the best days of his life.  He felt like he could be himself and that it didn’t matter to the other kids that he had to stop playing and sit.  One other very special little girl, Emily, sat and talked and talked to him.  They were totally engaged for quite some time as they shared their experiences around their symptoms, many medical tests, medications, treatments, and feelings.  He hasn’t stopped talking about her since we got home!  Actually, he has been talking about all the kids, but Emily definitely had a huge impact on him.  At bedtime, he included each kid he met in his prayers for healing tonight.



Swallow Test



The timing of the family picnic was perfection for our family because on Friday our journey took a very sharp and scary turn for the worse.  Parker spent the day at Shand’s Hospital doing some tests and getting his infusion treatment and meds.  His doctor spent a considerable amount of time with us, was very compassionate and thoughtful.  But nothing could have prepared me for the news she shared with Parker and I.  I had thought we had already passed this road, but she voiced our biggest fear…Parker has systemic JA, also known as Still’s Disease, http://www.medicinenet.com/stills_disease/article.htm.  And as if that wasn’t enough to hear, but she is concerned he could also have a very rare autoimmune illness called juvenile dermatomyositis (JDM), http://www.curejm.com/.  That was quite a moment…I literally had to catch my breath as I fought back my tears for my son’s sake.  She then went on to explain that she is very concerned about Parker and that we have to stop the progression of the JA.  He is failing all the TNF biologic drugs and so we are to only wait one week and if he is the same or worse she is going to change his infusion treatment.  In the meantime, she is setting up an MRI to look at how his muscles and myelin are behaving.  And this may confirm if he also has JDM.  So now we wait for the insurance to approve.  We are getting very good at “waiting”.  So, when we were at the picnic, I was asked to introduce our family and the kind of JA that Parker has…and for a moment I didn’t know if I could say the words aloud:  “He has systemic JA.”  It now feels all too real.

After a long day of tests and infusions we journey home.

Life can change in a moment… Our hugs and prayers go out to one very dear little friend with systemic JA who was happily riding her scooter and giggling with all the little girls yesterday; and today she was admitted into the hospital.  Love your children dearly and tell them you love them.

We only want what’s best for our child…

We completed Parker’s second round of remicade last Friday and met with is doctor.  She confirmed our fears…Parker’s arthritis has progressed, resulting in his joints turning on his left foot.  The doctor has given us a script for foot orthotics.  Her comment was that he is trying to walk on “bones”.  His foot is all swollen and rolling inward.  His toes are beginning to shift to the left.  Both sets of ankles swell constantly and we got confirmation that Parker has arthritis in every joint in his body.  He complains constantly about his feet, ankles, knees, lower back, neck, shoulders, wrists, and fingers. And he gets stabbing pains in his ribs.  The doctor is most concerned about the intensity of his pain, even more than his visible swelling.  She was also concerned about his inability to sleep well, due to the pain.  So, he is now taking morphine prior to bed.  It’s been hard putting him on such a strong medication, but it’s been even more difficult dealing with the judgment and comments of others when you tell them that your child is on morphine…”what, he’s just a child”, “are you sure you are doing the right thing?”, “maybe you should get another doctor”,  “do you know that’s a narcotic?”, “that stuff is addictive, why would you put him on that?”….seriously, do people really think that we “want” to put him on this? 

Parker is incredibly strong and sometimes he will play or work through his pain.  But the nights are the hardest.  He wakes in pain or he cannot fall asleep because of his pain.  People that make these comments do not realize what they are saying and we know this.  They are probably well intended.  This was one of the hardest decisions we have made thus far.  But Parker is sleeping now through the night and he looks more rested.  That can only be a good thing.  Sleep brings healing…And he desperately needs healing…he has been in pain since October 2008 and he is only eleven!

We know that it is shocking the amount of medications that Parker has to take, but Parker is not alone in this journey.  Children with JA are often on medications and many are on multiple medications because there is not enough research on this illness that affects 300,000 children.  And there are multiple forms of juvenile arthritis; so it is quite complex. 

I wish that I could share that things are better; that treatment has worked, but it hasn’t yet.  Partly because the doctor feels that it took too long to start treatment, but she was very reassuring and that she will help him.  We are really hoping that the remicade infusions will be the answer for Parker.  His rheumatologist wanted to bring him in sooner for his next infusion, but the insurance company is dictating treatment and timelines.  So we go back on Mar. 4^th.  However, he might have to go in two weeks for a solumedrol infusion to hold him over. 

In the meantime, we have an appointment this week with a dermatologist because he is having weird skin issues.  There is a dark spot on his arm that the nurse and doctor commented on as looking like a skin condition that happens with diabetes.  Good news, yesterday they confirmed that his glucose level looks ok…no diabetes.  He also has small bumps on his elbows and his elbows get red. The bumps go from red to white and sometimes back to red.  When I asked if it was psoriasis, they said no and they were not sure what it was.  Hopefully Friday we will get some answers from the dermatologist.

Parker had one important question for the doctor:  “Can I slide on my skate board?” (This is coming from my very hopeful child who is in his wheelchair more than not at this time.)  She told him no.  He totally shut down…I knew he was trying to hold back tears.  She tried to encourage him and explained why and that he needs to give the meds time to work and that he could easily get hurt right now.  She said that she is working hard to make him better so that he could go back to skateboarding.  She even tried to relate to him and pointed out that she was wearing his favorite color purple.  She rubbed his shoulder and looked at me with empathetic eyes and hugged me as she tried to encourage us both that it would get better.

They asked how Parker was doing at school.  He has now missed 55 days of school.  I shared that I was very proud of him because, for the second time, he made all A’s and B’s.  I also admitted that keeping up with all this medical stuff, helping him make up homework, and working full time is really getting quite difficult.  The school has been wonderful and he has a 504 plan, but she said it was time to ask for an IEP (individualized education plan) so that we could get homebound services for the days he couldn’t go to school.  Long story short, in our county homebound instruction is only done over the phone and he would not be allowed to continue taking advanced classes.  They also said that they would not dually enroll him.  So in other words, he would have to stop going to school and be in homebound, on the phone…how is this in his best educational interest?  How will this “help” me and my husband?  Remember, we both work full time.  Where is the “individualized” in the IEP?  What about the social aspect of being with his friends and his community.  I do want Parker to have quality of life, even if it is “sometimes”.  This is incredibly frustrating.  But at this moment, we are picking our battles.  We are likely going to stay with a 504 plan and continue to make up homework and hope, hope, hope that the remicade treatments start working after the next infusion.

For those of you who made it through reading all this, I do want to end on a happy note.  Parker has a new friend that he met in the infusion room during our last visit.  Many of the kids are younger and the vast majority are female.  But Parker was able to spend time playing a video game with is buddy Mark who is the same age as him.  It was great for the boys to connect and know that they are not alone in this journey and it made our trip to the infusion room a bit better.  His little sister, Charlotte, also has JA; and she did a dance for us.  We also got to see Dakota…we will soon be taking her on in a wheelchair race (LOL). Thanks to all our JA family…we couldn’t endure this without you!

Life is Precious...Love Each Moment and Each Other

A week in the life of the Lentini’s…Michael and I begin each week with comparing our work schedules and we map out who can be “on call” each day of the week.  We never know from day to day when Parker will need to stay home or go to the doctor.  We both have full time jobs and we are fortunate to be able to work out of our homes when we need to but it’s really been difficult.  Both of us are hard working and we have pretty high standards and good work ethic, so this shift in “how” we work has definitely been trying.  We have learned how to “tag team” and to be flexible with our work hours, but it is totally exhausting because often times, when the kids go to bed, we are back at work on our computers either checking emails or trying to meet deadlines.  And for those times when neither of us can get out of an event or meeting, my aunt and uncle (who are retired principals) come to our rescue to be with Parker.  We are eternally grateful to them.  And we are so fortunate to have understanding staff and employers.

Parker has missed an enormous amount of school and often times, when he does make it to school, he bottoms out and we get a call to come and pick him up.  He is trying but some days are so incredibly painful and he seems to be constantly fatigued.  He has been taking steroids at pretty high doses since May and yet he still has visible joint swelling.  The JA seems to be progressive and persistent.  Just when we think, things might turn the corner and get better, the JA seems to progress again.  He is either resting or doing make-up homework most of the time.  I work when he rests and then when he is able to do homework, I often have teaching to do or motivating J.  I am learning my history (since it didn’t really stick the first time around) and I am listening to/reading aloud some wonderful literature.  At least they pick some really good books at his school.  Math is same ‘ol same ‘ol... but we do have different ways of getting to the same answer.  Science is definitely the most trying… And Parker seems to have our “work ethic” because as much as he struggles physically, he somehow gets the work done and makes excellent grades.  He made all A’s and B’s for the second time in a row and he has definitely been absent way more than he has attended school.

And then there are the medications…not only is there are ton, in various forms, at several time intervals, but some have to be “compounded”.  You see, Parker also has allergies, one of them being corn.  Corn is used in medications either to sweeten them or to bind them together.  So, four of his medications have to be specially compounded at a specialty pharmacy and one of them is simply acetaminophen…yes, you know, like Tylenol.  If we could buy this over the counter it wouldn’t be nearly as costly as the $54 we spend on his “Parkernals”, as we call them.  We figured that they are made for him so why not name them after him….And then it’s always amazing to me that we have to give him some of his meds because his necessary meds cause something else…  And then there are Friday nights.  Oh how we hate Friday nights…shot night (all our JA friends can definitely relate)…yes we have to give him his injections…We have to give them on Friday nights because they make him miserable and so this way he is home with the side effects of headaches and nausea, instead of being at school…but he still is doing his “homework” through all this…  The side effects from these meds would probably put most adults to bed…So to give you a sense of the craziness around his medications, here is the “list”:

1. Advair 100/50 – 2/day
2. nasonex – 2/day
3. Saline (Not only for allergies, gets lots of bloody noses) – 2/day
4. zyrtec 10mg
5. acidophilus (to combat side effects…)
6. acetaminophen 500 mg (every 4 hrs)
7. naproxen 375 mg. – 2/day
8. tramadol 50 mg (every 6 hours as needed…needs big time right now)
9. Albuteral inhailer (as needed)
10. xopenex nebulizer (as needed)
11. colace
12. Lidocaine cream (for numbing injection site)
13. Predinsone (10 mg. daily for past 3 months now…but previously was at 20mg)
14. Methotrexate injection (1cc…this is a chemo drug, but at lower dosage than for cancer)
15. Remicade Infusion (just started a week ago, get 2^nd IV this Fri. When this started, we stopped enbrel injections), with pre meds of acetaminophen, benedryl, and solumedrol (in case of a reaction)
16. Folic Acid (methotrexate depletes this in the body, so he has to take it weekly, 24hours after shot)
17. Omniprozel 20 mg
18. Epi-shot (on hand if needed for allergic reaction)

And then there is the “balance” we try to maintain, for ourselves and for our other son.  We are determined to keep life as “happy and fun” as we possibly can.  Logan plays the sax and he takes weekly guitar lessons which he is truly gifted at and he loves to skateboard.  And now he has begun to also volunteer at the Arthritis Foundation on Friday evenings.  He is so compassionate and caring and we are so proud of him.  He made all A’s yet again…that’s his trend and we couldn’t be prouder.  He loves to learn.  We don’t pressure him at all…it comes naturally and we are so incredibly fortunate that we have two children who have drive and a true love of gaining knowledge.

Parker is learning how to “balance” his own life.  A child should not have to worry  at all about balance…a child should not have to endure pain and learn how to push and breathe through it…a child should not have to think about the “consequences” of having fun…and then there are people who try to give us well-meaning advice without really knowing what we are going through… we do let Parker play when he is feeling good (and that’s when people think we are out of our minds when we say he is pain a lot)…and he does play, but then he sleeps and sleeps or cries and cries because of the swelling and pain it causes.  The only thing he has played this weekend is video games because of what happened when he played outside last weekend.  He skateboarded with his brother and friend…so for about 10-15 min. intervals off and on, adding up to maybe 45 minutes total he road his skateboard.  By the evening, he could hardly walk and he said, “I loved having fun with Logan, but why do I have to pay a price of pain?  I think when I get to heaven; I am going to have a polite talk with God about kids with arthritis.”  What does one say to that?  I just listened and hugged him.

Life goes on…it continues all around us regardless of what we are experiencing.  So we appreciate the little things…And although our house is a complete mess most days and sometimes we are pulling our clothes out of our laundry basket to wear…Michael, the boys, and I have each other.  We love each other dearly.   We have our “inside jokes” and we treasure life’s gifts.  And when it gets tough, we might cry together and then hug away the tears.  We live moment by moment and love each moment together.

Latest News…New Med...New Hope

Well, I have been avoiding putting into words this last week’s events.  The purpose of our blog is to raise awareness around juvenile arthritis and we very much want to do that, but it is also hard to put into words what we have been experiencing.  The emotions have been from one extreme to another, but continually felt with love.  Our fear that Parker might have lymphoma was very real and yet, through it all, we were always hopeful.  Parker was aware of what he was facing and asked many difficult questions and when the pain grabbed hold of his little body he stopped himself from saying from what he sometimes says, “I just want to die and go to heaven, so I don’t have anymore pain” and he began to say, “I don’t want to die” or “why is all this happening to me”…But he knew he might have to fight and he would also say, “I know we can do this, cause I have you and dad and Logan.”  We were ready to battle and move forward with whatever we were told. And when the oncologist called to say Parker did not have lymphoma, it was as if the doctor gave me back my breath.  I hadn’t even realized how tightly I was holding myself together.  I could breathe again.  And I thought, “Oh thank goodness he only has Juvenile Arthritis”…and then I thought, “Oh my gosh, he still has arthritis… and now our battle resumes”.  Don’t get me wrong, I know they are not the same and having only one chronic illness is so much better than having two; and of course lymphoma is much more serious…but what so many people don’t realize is that JA is an ongoing painful battle that can also be life threatening. 

As parents, we have extremely difficult decisions to make with very little JA research to back our decisions.   We don’t know what long term effects our decisions will have but what we do know is that we have to do something.  See, we had to halt treatment of his JA until we knew he didn’t have lymphoma because the infusion that his pediatric rheumatologist needed to start him on increases chances of lymphoma.  So we make our treatment choices with a huge leap of faith and we tightly embrace our hope that this next round of treatment will slow down Parker’s JA.  Recently, one of his toes has started to turn in and his hands seem to always be inflamed and in pain along with his ankles, knees, neck, ribcage joints (did you know there were joints in the ribs) and several toes.  And the dentist has been keeping an eye on his jaw because he has had swelling and trouble with it too.  Then there is the constant close eye on his eyes…And we think that his intestinal tract is also affected by the JA.  And of course we still treat his allergies and asthma condition, which has been going pretty good. 

So, last Thursday Parker and I spent the day at the hospital for his newest treatment.  We have discontinued his once-a-week enbrel shot and now he gets infusions of remicade.  The nurse had some trouble getting his IV started (evidence of this resulted in a big fat bruise).  They started with “pre-meds”.  He took his special compounded acetaminophen (all over the counter brands contain corn and he is allergic to corn…in fact, 4 of his meds have to be compounded special for him); then he was given solumedrol (steroid) and Benadryl in his IV.  These are preventative in case he reacts to the remicade and then he received the remicade followed by additional pain meds (due to his flare that day) and they included his regular methotrexate (a chemo drug but at a lower dose than for children with cancer).  By giving him his methotrexate in his IV, we were able to have one week without Friday night shots (a very nice break).  So four hours later, we were on our way home.  The treatment left him very nauseous and for about 24 hrs. he had an extreme head ache, but then they subsided and he seems to be doing somewhat better.  We go back in 2 weeks for his second round and then hopefully not back for 4 weeks.  Once he gets to 4 weeks, he will then get the infusion monthly.  Parker was instructed that he could now get sick easier because his immune system is even weaker than it was with the meds that he is on.  So Miss Clean Gene me will probably be even more of a “germ-a-phobe”…

Many families are experiencing a lot of difficulties this year around their children’s JA.  Please keep them all in your thoughts and prayers.  Many of our JA friends have had changes in treatments, financial burdens, and multiple medical tests that are quite traumatic for young children.  So, we continue to be thankful and hopeful that some day there will be a cure.  We choose to live life fully and we love each other and laugh together. 


This week there was a new publication that might shed some light on how JA is triggered.  Read below:


Science Daily (Jan. 17, 2011) — “Scientists have identified a protein that acts as a "master switch" in certain white blood cells, determining whether they promote or inhibit inflammation. The study, published in the journal Nature Immunology, could help researchers look for new treatments for diseases such as rheumatoid arthritis that involve excessive inflammation.”
http://www.sciencedaily.com/releases/2011/01/110116144132.htm