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.