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”.

Renewed Hope!

As I reflect on the last week in the hospital, I now know we were exactly where we were suppose to be…As much as one doesn’t ever want to spend time in such a place, being there allowed for the doctors to try to reduce Parker’s pain while they teamed, examined him, ran tests, and tried some meds. 



Parker was very scared about returning to the hospital.  On the way up there, he told me that he and his counselor had discussed this the day prior because he felt like he was getting worse and might have to go.  He proceeded to share that there are some things that are “good” about the hospital:  he loves the nurses on unit 42; he would like to play with the child life specialist again…she loves video games and they battle, plus she really gets him; and he thinks it’s cool that there are Xboxes in every room since sometimes he can’t leave his room.  I was very impressed at how he was trying to find the positive in going to the hospital!

So, we get to the hospital…and guess what?!  Unit 42 is full, so we are put in an area where there are not only different nurses and a different child life specialist, but you guessed it…no Xboxes either.  Woah!  There was complete disappointment and Parker bit his lip trying to hold back his tears.  But then he took 3 deep breaths and he said…”It won’t be that bad.  We are next door to Emily (a JA bud) and we will meet some new nurses.” 

Igi Bear is accessed and ready for his hospital stay too!

Enter the first nurse who delivered the news that he could NOT leave his room because of the bleeding he was having and he might have c-diff, and she was not very friendly…but we only had her once and ALL the other nurses were fabulous!  The nurse who came in to access Parker’s port was a hoot!  She joked around with Parker and even accessed his Igi Bear’s port!  What an incredible gal.  Loved her! 

On Monday, I contacted Parker's beloved child life specialist and she came by in her Halloween costume, so he was thrilled.  And guess what?!...She got him an Xbox on a cart.  She is the “most to say the least”! 

Later, many docs came in…including Parker’s rheumy and the new rheumy who we have grown to love already (he was with Parker the entire week).  They put their great minds together, began to hypothesize and order tests.  Later in the day they returned…He did not have c-diff…yay, we were off quarantine; but he has osteopenia and they were concerned more was going on, so the first of 3 sets of MRI’s were ordered. 

They also broke the news…both docs felt like he should try combining a second biologic, one he failed before.  A shot called Enbrel…well that certainly did not go over good with Parker…And because he was a bit ticked about this we got to meet psych…that was fun, not.  I have to admit though; he never yelled nor cried…he just “refused”.  I asked the docs to give me a day to talk to him and prep him.  They did.  And he did J agree to the shots.  Psych, by the way, found him to have mild anxiety but great coping skills and they thought it was great that he had started counseling.  When they came back as a “group of 6”… I was just about to hop in the shower…I had to scurry to dress and come out.  I add these details because I just have to laugh…there is not a dull moment in the hospital and I felt like a new mom with a baby who just wants to shower… So the 6 of them did their final analysis and then I went to the hall with them.  I found out that they were not familiar with systemic JA.  And I thought…hmm…again, I am exactly where I should be in this moment…I share a bit with them about what it is and what it is like to experience it as a parent watching a child who understands everything the docs say.  I knew that 5 of them were student/residents.  What a great opportunity to educate.  I think that some of the psych students might have needed a psych eval…they looked scared to death.

Parker was called to MRI just as the Halloween party was starting, so he missed the “trick-or-treating” hospital style.  But an amazing thing happened.  When we got back to the room, he saw a goodie bag waiting for him.  He emptied the whole bag and was so excited because there was NO candy in it…yes, you read that right…no candy.  See, he is allergic to corn and corn is in so much candy.  His bag was full of gadgets, toys, and this really cool Batman activity book.  He couldn’t believe it…because he was Batman for Halloween, so he thought that was just perfect.  He was so excited he told his friend Emily (next door).  And guess what?!...Gavin (another JA bud who joined us on the floor that day because unit 42 was still full) and Emily made that goodie bag for him.  What amazing friends we have!  Thank you so so much Gavin and Emily!

We had a difficult night Halloween night…Halloween is Parker’s favorite holiday.  It was hard for him to hear about his brother’s fun and he was in sooooo much pain that night.  It was just long and hard.  We landed back in MRI the next morning bright and early for a 3.5 hour MRI.  The MRI tech marveled at how amazing he did and went on and on about how he did better than any adult she has ever scanned.

Purple Sock Monkey
stayed with Parker for all 3 MRIs.

After the MRI, I have to admit, I could tell Parker was losing “hope”.  They were desperately trying to decrease his pain with an alternating schedule, every 3 hours, of toradol then morphine in his port.  So 6:00 toradol, 9:00 morphine, 12:00 toradol, 3:00 morphine…We kept thinking…this time his pain will decrease…but it only did a bit from a 10 plus to a 10 minus.  The hardest thing in the world for me is to see Parker in so much pain he cannot sleep.  And after 3.5 hours in the MRI machine, he looked totally wiped out.  I could see tears in his eyes.  He held his little purple sock monkey so tight and close to his heart as we waited to be transported back to his room, which by the way was a half a mile away because we took a tunnel over to the other side of the hospital across the street.  I leaned down and kissed his forehead and Parker reached up and wrapped his arms around my neck.  I whispered in his ear, “I know this is hard.  You did amazing in the MRI.  I know you hurt, but please do not lose your hope.”  He leaned back and looked in my eyes and I said again, “Remember, we have to stay hopeful, they will figure this out.”  He said, “Don’t worry mom, with hope anything is possible.”  Just at that moment, a beautiful young girl came into the room and said, “Hi, I’m Hope and I am here to help you back.”  Parker and I just started to crack up and this time tears welded up in MY eyes…Parker told her what we were just discussing.  And she said, “See, you asked for Hope and I was sent to you.”  They chatted all the way back as I prayed for his relief and answers.

After that trip back and a bit of “bribing”, Parker agreed to the Enbrel shot.  When the doc came in the day after his shot and we told him that Parker’s pain was decreasing, he just smiled, looked at his watch and said it’s about 24 hours since he got his shot.  It was exactly 24 hours after his shot and his pain began to decrease after a year and a half of incredibly intense pain!  WOW!  The doc shared with us we needed to do one more MRI.  We did it…Parker has a genetic defect that he explained as dilation of the cervical spinal cord at C4-5.  At first he was nervous about this but he consulted pediatric neurology and they said it’s within a limit where they don’t have to treat.  So that is marvelous news.

Sent silly faces to my friend to pass the time.
Thank you Grandma for my Cookie Monster and slippers.

A couple days after the shot, Parker got his Actemra infusion treatment and we went home.  Thank you to everyone for your support and kindness!  His pain has continued to decrease.  He is at a 6 today!  Yes, a 6!!!  And he got his 2^nd shot tonight.  We thank God and the doctors for finally giving our son relief.  He now has 2 biologics, Enbrel and Actemra, combating his systemic JA.  Enbrel is a TNF blocker and Actemra is an IL-6 inhibiter.  So I guess this means that Parker’s body has two types of cytokine that were over producing and telling the body to create cells to attack Parker’s own body.  Of course there are also tons of warnings about giving 2 biologics and it’s not recommended because each weakens the immune system.  But what are parents supposed to do when their child’s own body is attacking itself putting his organs at risk?  Parker has already had problems with his heart, bladder, lungs, lymphs, and stomach…So we took a leap of faith and we “HOPE” it works!  Our child’s voice is back.  He is smiling with less pain behind those eyes.  He is going to school again and loving it!  Logan says his charisma has returned.  For our family…our HOPE is renewed.

Parker LOVED this saying that was in his room!







My Family’s Bucket Overflows with Thankful Reflection…

I am so very thankful for each person who takes the time to try and understand and reflect on our families’ struggles and strength.  If you are reading this, thank you for stopping for a moment to join in our family’s journey.  I have learned this week that some people feel that what we write is too depressing and some have even de-friended us or have talked negatively about us.  I know that what we are going through is hard to understand or may cause sadness, and it’s ok if some do not want to take part…but for those of you who do…thank you…this is my attempt to share some positives in our lives…we ARE a generally happy family who just happens to have some struggles at the moment and writing is one way of processing…

Today, in spite of all that happens with regard to Parker’s JA, I am thankful for the gifts in our life.  For those who have attended any of my work trainings or those who came to the JA Tampa Family Connect Day, you heard about the importance of “Filling Your Bucket” (Fill a Bucket: A Guide to Daily Happiness for the Young Child by Kathy Martin and How Full Is Your Bucket? Positive Strategies for Work and Life by Tom Rath)…See, we all have a bucket and the fuller our bucket is the better we are, the more able we are to cope with hardships, the stronger we become, the happier we feel…but sometimes our buckets are dipped into.  Of course, illness dips into our bucket… as does too much on our plates, mean words, problems, frustrations, unkind acts, etc.  When our bucket become empty we have little left to draw from, so it is important to fill up our buckets and the buckets of our friends, family, ….people we care about.  And a funny thing happens when we “fill others’ buckets”, we also fill our own bucket at the same time.

Michael and I have two happy boys, each with their own gifts that are unique to them.  Parker loves purple (like you didn’t know that already), is an avid Rays Fan, and has great friends and a way with younger children.  He enjoys video games (truly an escape), is a great little chief, likes making videos and doing photography, is a wonderful writer, likes social studies, has great coping skills and problem solving strategies, is incredibly brave, is an artist in the making, and enjoys the beach.  He can also find a way of using humor in a very positive way.

Logan is growing into a wonderful young man.  He knows how to have fun, he thinks of others, is a helper by nature, and a pretty happy go lucky kid who goes with the flow.  He is engaged in the high school life:  lots of studying, band, after school outings, trend setting, and dances.  He cracked me up this week…he created a Facebook Event and about 50 kids participated in dressing formal for school on Friday!  Logan also thinks “big”…he tries to give back to the others, is always thinking of ways to raise awareness, and he strives to always to his best.    He loves music, playing the sax and guitar, skateboarding and skim boarding, and is open minded.  And of course, Michael and I are incredibly proud of his volunteer work with the Arthritis Foundation.  Logan did an amazing job at putting on the Tampa JA Family Connect Day last weekend.  If you would like to see the pics and day’s events please visit the website link and scroll down a bit:  http://www.arthritis.org/chapters/florida/juvenile-arthritis.php

I also would like to take a moment to fill my husband’s bucket.  He totally overflowed my bucket last weekend with his amazing “first” blog and it helped me get through the 6 days in the hospital with Parker.  Michael has a way of making people laugh and sometimes people don’t see that extra sensitive side of him.  He is an amazing father and my partner for life.  I say partner because we are together, connected, and we jointly make decisions about our family.  He is respectful, kind, and has a way of calming me when I feel the world is caving in.  We balance each other.  He is goal driven and the love he shows me and the boys is deeply profound and unconditional.  I am so very thankful to have him in my life and I love him dearly. 

Don’t get me wrong…the boys can fight, my husband and I can agree to disagree, we all can get on each other’s nerves every now and then, our house looks like a bomb went off more often than not these days, but we have each other…no matter what!

I want to thank each and every person who has seen “our buckets emptying” and have filled it back up with your kindness, support, notes, encouragement, phone calls, mail, and hugs.  It’s interesting how just a few unkind thoughts/people/difficult events can really dip deep and sometimes rapidly drain our buckets, but I am trying hard to quickly remind myself there are some who have filled our buckets, so I try to dip into those reserves when needed.  So I encourage folks, when you see someone struggling or sad or frustrated… try “filling their bucket”, you might be surprised in how your own bucket begins to overflow.

It's been a very up and down weekend.

It has been a very up and down weekend.  On Saturday we had the JA connect day in Tampa, which Logan helped plan.  He did a great job, with help from Rochelle and the Arthritis Foundation.  We are so very proud of Logan and all he did to make this day so great.  He is such a great big brother. 

The day started on such a high note and well, life with JRA has a way of changing things.  Parker has been having a very difficult couple of weeks and hit rock bottom on Saturday.  One of his doctors was at the connect day and said we needed to take him in, to Shands in Gainesville.  So when we got home, we packed Parker a bag, and Rochelle packed, and they were off.  Not knowing how long they will be there, or what to expect, this is what we have become accustomed to.  Of course the usual to start, blood work, which came back fine, so we have that going for us.  X-rays of chest, knees, ankles, and back.  Still waiting to hear about those.  Now waiting on MRI's.  Doctors told Rochelle it could be something in addition to Arthritis.  Really!  Like Parker doesn't have enough to deal with.  This JRA thing is just not fair.

Rochelle is so strong and such a wonderful mother, she is always there for her boys.  I wish she (us, Logan, and of course Parker) did not have to deal with this. It is so hard to explain to people what we (mostly Parker) are going through.  They see Parker and they do not see the pain he goes through every day, hour, minute.  People do not know the "show" he puts on because he wants to be treated normal and make people feel good.  He wants to be like his friends, go to school, play, etc.  We (as a family) are now part of this" club", JRA, and not by choice.  Most people don't get it, and never will, get what we go through every day, but the "club” members do and their support is amazing.  I truly thank all of you.  I am not saying all don't get it.  I am merely saying not enough people understand JRA.  Which brings me back to Logan.  What he did this past Saturday, JA Connect day, was such a special event.  He worked on this event for 2 months and it was such a successful event. 

We now wait to hear what is next for Parker.  As hard as this is for him, it is just as hard for Rochelle.  As stated, she is so strong and I love her so much.  She is such a wonderful person.   So keep Parker in your thoughts.  Know that he has his mother, Rochelle one of best humans I know, with him.

Today is Today…the Day Before Tomorrow

I think that today was one of the hardest days I have had to face so far.  I am not quite sure why.  Maybe it was because this week was so intense (endoscopy/colonoscopy, port insertion, ankle/wrist splint fitting, and infusion treatment).  Maybe it’s because of all we, as a family are juggling (work, two boys with busy lives, housework, tons of medical appointments, etc).  Maybe it was because of the constant unknown and never being fully prepared. Or maybe it was simply because it’s been raining non-stop and it seems to be affecting every kid with JA that we know.

We try to desperately believe that things will get better.  We constantly pray for healing, strength, and relief.  We continually marvel at the strength of our family.  We pause to celebrate the little things that bind us to each other and appreciate the support of those who care about us.  Our hope is vast…but today is today…and in this moment, we are struggling to make huge decisions all while we continue on.

Every time Parker exerts his joy in the moment, it seems there is a harsh price to pay.  All week has been hard on his body.  He tries to push himself but with caution.  But it seems to be a constant battle to find that balance his body demands.

He made 2 hours to school this week.  This was amazing considering this week.  Half of his tests came back from his endoscopy/colonoscopy.  He does have gastritis (swelling of the stomach lining).  One small reminder that all his organs can be affected by inflammation of his systemic (hate that word these days) JA.  If this was the only thing we were dealing with, it might not be as big of a deal…but he is not eating well.  The other half of the tests are still being processed…stay tuned, hopefully with good news.



Parker's Port on Day 4, healing nicely.



His port is in and functioning well.  However, his body would not behave normally for this either.  The surgeon could not find a good vessel in his chest, so he had to go in his neck, therefore his port is subclavical (higher than normal).  And the surgeon also noted that he bruised more than normal.  He has some issues with how his blood pools and is bruising pretty easily.  When he came out of his surgery, he reported that his pain was at a 6.  Now let me clarify a bit.  He was a 10 at his joints, 6 at his surgical site.  And even when all his local anesthetics and anesthesia wore off, it never got above an 8.  Initially this totally excited me because he hasn’t reported his pain level below a 10 for about a year now.  He says it’s a 10-, 10, or 10+ every day.  But then as this sank in, my husband and I realized that Parker is in pretty significant pain daily.  So, we are incredibly proud of his perseverance, resilience, enthusiasm, and persistence.

Parker had a good friend over last night.  They had such a good time.  They played video games and chatted and watched movies.  When he left though, Parker hit rock bottom.  He slept all afternoon.  Yet another reminder of the energy that is lacking, despite how hard he tries.

Thanks Mina for visiting Parker in the Infusion Room.
Parker had fun playing a joke on the doc and nurses.
He said he was tired of all the attempts to get his IVs started
(thus the headband with syringe), so he decided to get a port.

So, Friday was Parker’s infusion treatment and doc appointment.  We got news that his muscle enzymes have been off since his hospital stay in July.  We were asked how we felt about the treatment he has been on for 6 months now.  I feel like we have some big decisions to make again.  I am not ready to give up on Actemra yet, as it is the only thing that has even touched this horrible disease.  But as I was reminded about his pericardial effusion, elevated enzymes, pluersy, and now his stomach, I felt like someone was punching ME in the stomach.  This is all VERY REAL…and I keep trying to be optimistic and yet there seems to always be some new battle to buck up and fight.  Parker is now considering joint injections.  We will see…  Parker asked lots of questions this last visit and has been processing a lot this weekend.  We all have.

Beautiful tile mural on the 4th floor of Shands Hospital!

On the up-side, Parker has picked out really cool colors for his new light wheelchair that we hope gets approved.  We had a fabulous time at our Boggy Creek Family Weekend and Parker’s Pal came and visited him in the infusion room Friday.  Thank you so much Mina!  Logan is planning the most amazing Family Connect Day and we have so many fabulous speakers and volunteers and a wonderful venue.  And all our laundry is done!  Very therapeutic ;O) 

Logan and Parker had so much fun at Boggy Creek with
Mina (he lost a bet and had to wear a dress...it was Pirates and "Princess" weekend) and Jake!
Thanks guys, you were the best and we look forward to the day you are both Docs...Maybe Pediatric Rhuematologists? Hint, Hint.

"Thanks" is Definitely not Sufficient to Express Our Gratitude

Our family would like to share our letter of gratitude for all that Make-A-Wish did to grant Parker's wish to meet Ben Zobrist and the Tampa Bay Rays.

September 18, 2011

Dear Norma, all Make-A-Wish Staff (including Melissa, Eva, and Maria), and the Rays,

My family wants to thank each of you for all you did individually and together to grant Parker’s wish.  I am sure you constantly hear that “there are not enough words to express our gratitude”.   I am going to do my very best to express our heartfelt appreciation.

As you know, Parker’s sense of self drastically changed the day that he learned that he has systemic juvenile arthritis (a.k.a. still’s disease).  He went from being a child who was actively engaged in sports and very active movement, to clearly being a spectator; but he still has a great appreciation for sports.  He has also struggled with thoughts of the possibilities of this disease taking over, not only his joints and muscles, but his internal organs.  This realization would probably be too intense for most adults, and so we greatly admire our son for his bravery and perseverance. 

A parent’s job is to keep our children safe, teach good values and problem solving, and to bring happiness to their lives.  As hard as we have worked to keep him safe, this disease has invaded his physical body.  We are desperately trying to stop its progression and the costs have been great.  As with many life threatening diseases, when one is faced with this reality the world seems to stop.  And yet, as our world stopped, the world around us felt as if it was moving at fast pace.  Our family has dealt with making hard decisions, examining what is important, and realizing that our faith must propel us forward.

When it was first mentioned that our child would qualify for Make-A-Wish, there were very mixed emotions swarming inside of us.  One was, “oh no, there are other children who need this more than our child”.  Another was, “well he doesn’t have cancer, so I don’t think he should apply”.  A third was, “but he is going to get better so this should be reserved for kids who will not”.  Then finally, we faced the “truth”…there is no cure for our son’s JA; he is going to live with this the rest of his life; and he deserved to experience happiness and something to look forward to and celebrate.

Of course his wish every single day and with every single shooting star, fallen eye lash, dandelion, prayer, and birthday candle is for a cure…we wish that Make-A-Wish could grant the cure!  And although our wish for a cure has not come true yet, Make-A-Wish and Ben Zobrist has helped us with raising awareness that a cure is so desperately needed for systemic JA and all juvenile arthritis diseases.  This gift, to a parent, is priceless. 

Most importantly, Make-A-Wish and Ben Zobrist has brought profound happiness to our child.  Parker has long admired Ben Zobrist.  Parker feels that he is the most “loyal” fan of all time.  He began following Ben’s career very early on and what he loves most is the versatility that Zobrist has.  When he talks about him, there is pure excitement in his voice and amazement in his talents.  He admires that Zobrist takes on a challenge and that he stretches himself and his possibilities.  As parents, Michael and I both enjoy this excitement around the game of baseball but we have always felt that Ben Zobrist is a great role model for children as an athlete, father and through his faith.  As an educator, I am deeply touched that he thinks of our youth and does the “take Zobrist to school” program.  In talking with Ben Zobrist over lunch, my thoughts were confirmed; he is an exemplary role model for our children.  Parker “believes” that Zobrist can achieve his goals.  Interestingly, Parker is a lot like Ben Zobrist…Parker doesn’t give up, he stretches his abilities, and he has faith that one day there will be a cure and that his life has purpose.

As you know, this entire experience has been bitter sweet.  The same week that Parker was granted his wish, we were also dealing with my grandmother being released from the hospital with heart issue and then my grandfather being rushed to the hospital with hemorrhaging on his brain resulting in a stroke.  On our way to our Make-A-Wish, I went to the hospital to say good-bye to my sweet grandpa. 

As we switched gears, the four hours we spent with Ben Zobrist and the Rays were shear bliss.  It was as if we escaped reality.  We were greeted with love and excitement and the Rays took thoughtful care in including our older son, Logan, in the day of excitement.  We so appreciated that gesture. 

We pushed Parker in his wheelchair to the field and he go out of his chair to walk to home plate.  From that point forward the adrenalin he experienced gave him the strength to stay out of his chair the entire time with the Rays.  After standing on home plate and swinging the bat, Ben Zobrist entered the field.  Pure delight engulfed Parker’s face.  That moment seemed to take my breath away.  The joy was apparent, in his face, in his body, and I am sure it was filling up his soul.  This joy continued to grow as he interacted with Zobrist.  As exciting all the gifts of signed cards, bats, and jerseys were, the gift of time, love, and pure engagement with our son was the true gift.  Ben Zobrist brought our son’s joy back to him and us.  If I wasn’t there, in the moment, I would not have believed that Parker was throwing that baseball so accurately and forcefully to Ben.  It was as if he was “cured”…

I am sure Ben Zobrist has no idea that Parker had not had much strength or endurance for quite some time.  In fact, as soon as Ben walked away to prepare for the game, Parker sunk back into his wheelchair and admitted that he needed all his meds and that he had to leave to lay down.  Most days he feels terrible and deals with multiple medical appointments each week.  But the four hours with Ben Zobrist took all that away.  He was a kid again, filled with excitement and joy.  He had fun and felt “normal”.  We are so thankful that Ben Zobrist agreed to meet Parker and he spent so much time truly in the moment with him.  This gift was amazing and it keeps on giving every time he tells someone about his experience.  He lights up all over again, his voice has energy and so much excitement; it is hard to believe how very sick he is when he recalls his Make-A-Wish. 

Ben Zobrist’s and the Make-A-Wish Foundation’s gift has also spread to others.  Parker’s brother was intensely inspired by Ben’s kindness.  Both boys can see there is so much good in this world.  Parker has been recognized by others as “the child who had his wish granted and met Ben Zobrits”.  He received the most amazing letter of encouragement and admiration from a youth leader in the community.  And his story has touch people beyond our community.  A woman in NY sent him a Ben Zobrist bobble head from time when Zobrist was with the Tri-City Valley Cats.  So his Make-A-Wish is truly the gift that keeps on giving.

I have wanted to write this letter much sooner than now, but as you know, my grandfather passed away the evening of Parker’s Make-A-Wish.  So our family has been swelling with the entire spectrum of emotions.  But I must reflect for a moment on my grandfather.  He has taught us much in his beautiful life time.  He was a man of pure kindness.  None of us who knew him can ever think of a time when he was angry.  He always treated others with love and a helping hand.  He had a gift of granting children many beautifully contagious smiles.  He had a way of sharing his heart and bringing happiness to others.  I know he would have said that Parker’s Make-A-Wish was “ the most to say the least” and he would have thought that meeting Ben Zobrist would have been “top drawer” and would have reflected on the fact that all we need is a “smile and a few kind words”.  Thank you Make-A-Wish, the Rays, the Don Cesar, and most importantly Ben Zobrist your smiles and kindness and for granting Parker the gift of happiness. 

With much love,

Rochelle, Michael, Logan, and Parker Lentini

Make-A-Wish...A Picture is Worth A Thousand Words: By Parker

Limo arrives to drive us to meet Ben Zobrist



Stop at Subway to pick up food for our lunch with Zobrist





Dad and Mom in back of limo



Getting interviewed by the press





Giving Ben Zobrist some gifts for him and his kids



He thanks me for the gifts





Ben gave me some autographed baseball cards





Time to have some fun...Ben asked me to play catch



Ben and I playing catch





Ben and the family




As they stretched for the game they watched college football.




Longo autographes for us




Before game stretch




Time to answer some questions for the paper




Look at Zorilla on the wall




Answering some pre-game questions with Joe Madden




Dad and Kotchman




Logan and Upton




Upton and Zobrist laughing at our funny remarks




Johnny Damon signs my mini bat that Sadie gave me




Kotchman likes my number




John Jaso signs some stuff




Ben gave me his jersey and autographed it for me




Batting practice




Desmond Jennings didn't realize I had a lot for him to sign




Kelly Shoppach is very nice





Watching batting practice





Dad takes a picture of us and David Price





Mom poses for a picture with her new hat




Ben Zobrist hands




Ben Zorist signed my custom hat




Ben Zobrist feet



Don CeSar Sous Chef Jeremy Anderson




The pastry chef made me "the reveal desert"



We sat at the special table in the pastry kitchen





She made me an edible turtle, but I didn't eat it



The Don CeSar chefs gave me a shirt and cookbook



Thank you Make-A-Wish!!!!

  


Mom and Logan after Don CeSar tour