Mamma Bear

Mama Bear had to take some big deep breaths this entire week to stay the calm bear in the bunch.  Whoa!  What a wild week we had.  Between finding out Parker was bullied at school his whole first week, to him having trouble breathing and going to the ER, to Parker being admitted and then trying to go to a few classes to show he is truly trying his hardest (because we desperately don’t want him kicked out of traditional school)…and finally, then ending the week with Logan going to the ER with a “false alarm” due to something he ate…I was so very very ready for a three day Labor Day weekend, even though I barely got to “work” this last week and have to make up hours.

People tell us all the time:  “things will get better” or “hang in there…” or “I can’t believe all you guys go through”…  I am here to tell you that when you go through has many challenges as we often do, you get really good at problem solving…but sometimes I wish we didn't have to do so much of it.  This week we had to face so many of our fears!

If you have been keeping up on the blog, you know that Parker had a great time at Camp Boggy Creek and an amazing first week of school.  We truly were a family full of joy and felt so blessed to have such a smooth transition back to school after 3 years of him being out.  When I picked Parker up at school on Friday, Parker informed me, with all the bravery he could muster, that he has been bullied all week.  He would not tell me by whom, because he didn’t want to be a tattle-teller.  He is trying so hard to just fit in and not stand out, but this bully found him anyway and he was so cruel.  He used nasty vulgar language, insulted his intelligence because he was “back in 9^th grade again”, and insulted “his mother” in such a mean way that Parker could only tell me through tears because he was so very embarrassed.  Yes, the Mama Bear in me wanted to cuddle him and also stand on my hind legs and attack. 

I called the school and addressed it with the principal.  I assured her that this student had to be a new, as children at this school never spoke this way…and especially not in the classrooms on a daily basis.  I gave her as much detail as I could, given what Parker told me, and that this kid was in multiple classes with Parker.  I also said that I felt like this child needed support, because for him to behave this way, he clearly needed help.  She assured me she would be talking to her teachers and dealing with this.  I also assured her that I would be “coaching” Parker on how to deal with this too.  The good news is, this kid did need help and because I alerted her he is now getting the support he needs to be successful.

On Sunday evening Parker was having trouble breathing.  He said it hurt to take breaths.  So, when bedtime rolled around, he slept with me, with his bi-pap machine on, and I pretty much was awake most of the night to make sure he was breathing.  When he woke, breathing hurt more.  So, we called the pulmonologist and took him to the ER of the hospital where the pulmonologist works.  Besides taking an x-ray of his lungs and almost giving him Tylenol (he is allergic), they pretty much did nothing else for him in the ER except cause us complete misery.  They didn’t even hook him up to monitors; even though I told them why I brought him in; and that he has a history of pleurisy and pericardial effusions.  They did run some routine labs and it did show elevated CRP (an inflammation marker).  As evening approached, the resident doc came in to tell us that they felt that he was in a flare and that we should consult rheumatology.  So, I suggested we leave and take him to the hospital where his pediatric rheumatologist is…He said he felt that would be ok and he left and I went outside to call his doc to see how to proceed.  

Unfortunately, I could not get through on the phone, so I went back in to the ER to all hell breaking loose.  There were about seven staff outside Parker’s ER room and they stopped me to tell me that they wanted to admit him.  The attending doc then went on to tell me that my husband and Parker were quite upset but she felt that this was best.  She went on to say that if we left we would be going against medical advice and they would report us.

For a moment, I could feel the room spin…surely this ER doc wasn't insisting that we get treatment from the very pediatric rheumatologist we had left many years prior?  And why were all these people in front of Parker’s room.  As I look around I could see stern straight faces on all of them, several with their arms crossed, all standing firm, and all looking at me.  I felt a panic beat in my heart, I started to sweat, and I knew I had to stay calm and help them see this from our perspective and surely all would be ok. 

So I took a huge deep breath, and looked right into the attending doc’s eyes and then over to the charge nurse and began my story.  I explained that when Parker was 8, it was very hard to get help for him.  For over a year and a half we took him to specialists before we finally got a diagnosis of JA for him.  Then we started seeking treatment and medical care at this very hospital with the pediatric rheumatologist.  Months and months went by and Parker continued to worsen.  Clearly what was being done was not working.  Parker began running daily fevers that came and went and his rashes were increasing and he was so very swollen it was completely visible.  But back then, as it still is now, seeing him in pain was the very worst thing.  Parker was bad but back then, we didn't have a follow-up with that doc for 4 months.  I called and called and called…I kept getting excuses from the nurse practitioner as to why the doc hadn't called back and she kept telling me her hands were tied, she couldn't bring him in unless the doc said.  This went on for 8 weeks as Parker continued to get more severe.  This doctor would not call us back or allow us to bring him in…he wouldn't even give our primary doctor a call back.  Finally, our primary doctor said we could not wait any longer; we must get him to a doctor who could help him.  So, she mailed over 100 pages of records to the doctor he now sees.  We were seen the very next day.  We then were on a fast track for treatment and soon Parker was hospitalized.  These were very difficult times and I explained to this attending ER doc that I was sorry that my husband was so angry and that Parker was crying, but that I felt that they had every right to be upset.  Because see, we have been told…on multiple occasions…that if Parker would have gotten better and quicker treatment in the beginning, then he would likely not be as severe as he is now.  The nurse said to me, “please don’t apologize”.  The attending doc, with her straight face, said she still wanted him admitted here and under rheumatology.  I asked why he couldn't be admitted under the pulmonologist and she said he doesn't admit.  I then asked why I couldn't take him up to his regular doc, who knows him best and works with all his docs.  She said because he needs observation.  I said, “Then we could transport him.”  She said, no, because they have docs here who could treat him.  I asked that he not be seen by the doc we left.  She said she didn't know if that was possible.  I then continued with that the resident doc said it would be ok if we left, but she persisted that if we did leave then we would be reported for going against medical advice…that is when I glanced over, because I saw her eyes drift to the people who looked like administration in suits and then I saw that the “red light” was on outside our room…indicating the alarm would alert them if we were to leave.  And much like a caged animal, I felt trapped.

I asked who was on-call.  As I silently prayed that it wouldn't be the doc that would totally stress out Parker to come face-to-face with… It was the other new rheumatologist.  Finally, I agreed we would stay if they would only allow the new doc to see and treat Parker and I didn't want the other doc even seeing his records.  They agreed.

So, finally, after a very long day in the ER, I went into the room to explain to Michael and Parker what happened in the hall and what was going to occur.  I could see the anger on Papa Bear’s face.  I could see the fright on my Baby Bear’s face…  I had Michael leave to get dinner for all of us, since we had been in the ER all day, but also to just get out and chill down.

Echocardiogram

Soon after we all ate, we finally went up to the room.  We had been assigned a floor doc as a case manager and it was obvious nothing more was going to happen that night.  So, Michael went home.  Tests/scans/labs were all done the next day.  What it came down to is Parker was in a flare, likely brought on by an unidentified virus and his rib cage and surrounding muscles were the most inflamed.  He was given morphine on the floor; his lungs and heart were ok; and by that evening we were home.  All of the tests that were done on the floor could have easily been done in the ER the day prior. 

My niece and nephew on a hall
picture as we left the hospital

Wednesday, Parker slept the entire day.  Thursday we went to the Pain Management doc and came up with a plan with his pediatric rheumy.  I took him to school for one class and he cried and didn’t want to be there, due to the pain…I left him crying (along with the admin and nurse)…one class, just one class… and then I just went to my car and cried my eyes out.  I cried for my son who must continue to live with pain, who I must push to keep moving, even though it hurts, because it always hurts…and he has to live with that pain…and then I said my prayer for him…took some deep breaths…and drove to work.  Because life goes on…

Trying Not to Let Fear Take Hold...Trusting All Will Be OK

Fear can seem to momentarily paralyze us…Michael and I feel like we have been hit hard in our gut and the wind has been knocked out of us.  The last few weeks have been tough to digest.  Parker has seen progress on the RAPPORT study and for that we are incredibly thankful.  However, he is not doing as well as the other children on the study and we have seen the return of some classic systemic JA symptoms.  But today, it was made official… we cannot get the drug approved for continued use after the study and next Friday is his LAST day of the study. 

I broke the news to Parker and he totally withdrew and told me to leave him alone.  So I honored his request…as hard as it was, because this was not his typical reaction to bad news…  About 40 minutes later, one of his hospital homebound teleclasses started and when the teacher asked him how he was doing (like she does with each student during role call), he could barely squeak out “not too good”.  She said he could just listen today.  He said “ok”, muted his mic, and burst into tears.  All I could do was hug him…

Even before he voiced his thoughts, I knew what he was thinking.  He is scared of regressing even more.  He is scared he will have to go back to multiple biologics.  He is scared it will attack his lungs or heart again and he will be hospitalized.  He is scared he will be back on 2 infusions a day of kineret.  The day that we had his Arthritis Foundation Walk (May 5) was quite the celebration because that was the last night of his kineret infusion.  That night we made about a 10 minute video in case other families wanted to see what our twice a day routine entailed.  

He has been through so much such then….

During our last visit to the ped rheumy, we also had confirmation that he does have hypogammaglobulinemia and it is NOT due to his use of biologics but his messed up immune system and we were told he would probably need IVIG infusions for the rest of his life.  She also shared that she really feels he also has psoriatic arthritis in conjunction with is systemic on-set JA and all the other overlapping stuff.  And although he has been back on IVIG, his numbers are not increasing like she would like them to.   It is incredibly frustrating and concerning.

We are processing a lot right now.  Michael is coming with me on his next overnight infusion of IVIG this week, so we can talk about next steps and try to make quick decisions.  We are trusting all will be ok and trying not to let fear take hold of us.

Kids with JA are My Heroes!

Parker says, "Happy Father's Day to Dad and Grandpa Nick!"

Parker is still at Shands Hospital.  We are happy to say that he is improving.  Pain is still pretty intense but the meds are helping to take the edge off.  He got up and walked a bit today so that is great.  His doc came in this morning and although he is still symptomatic she was pleased that many of his blood levels are improving.  There are improvements with his ferritin, platelets, white and red blood cells, CRP, fibrinogen, and his sed rate is good.  She said that with the study she is seeing improvement in the blood first, so this is fabulous news. 



Swollen hands with red tips, greyness between joints,
paleness on hand





Red heels



Parker's abdomen and kidney ultrasound was good.  She does want to keep him in the hospital though because of the pain, pericardial effusion, stiffness, swelling and she is still waiting on some labs and she ran his immunoglobulins today.  He seems to breathing easier today.

We feel so fortunate to have such an amazingly thorough group of pediatric rhuematologists helping Parker.  In the last four days, he has actually seen all 3 of the docs and Michael and I know that their 3 brilliant minds always have Parker's best interest in their hearts because they not only treat him medically but with loving care.  We know that Parker has been difficult to treat and we appreciate their forwardness and honesty and their ability to explain things so that we can understand the whys and next steps and choices we have to make.  So, although it is never fun being in the hospital, we know that he is in excellent hands.

We are glad that Parker has moved past the "placebo phase" of the RAPPORT study and he says he has no regrets in doing it because he knows that he is helping find a cure.  And although Michael and I are incredibly sad to see our son in pain and that this darn disease has once again gone after his heart, we too feel that this next phase of treatment brings much hope. 

Last night was methotrexate night (all those families out there who have "shot night"...I feel for you all). We all thought Parker would be getting it as an infusion in his port....but because of the study and not wanting to compromise anything, it was ordered sub-Q (shot form).  Parker had a melt down...now mind you, he had his steroids increased again and he has been scared and then he was told he was getting the shot form...oh my gosh....we both were in tears.  He is fine with shots...but this method of giving him the methotrexate really makes him very nauseous and he was afraid he would puke.  Remember his stomach has also been really bad and they have been treating that along with the heart since they think his gastritis is flaring big time.  Methotrexate (for those of you who don't know) is a chemo drug and they not only were giving him a shot but an increased dose.  He finally agreed after much coaxing to do it.  They gave him IV zofran first to help and we did it right before bed so he could sleep through the worst part and I lay with him all night. 

It's crazy how I can hold it all together through so much and then something like this shot sorrows me to the core,especially since the doc is talking about continuing the shot.  For the last several months he has been doing the pill form of this because there is a methotrexate shortage of the shot.  And Parker really prefers the pills.  But we also think that the pills is what is irritating his stomach so bad.  I really hate systemic juvenile arthritis...I hate that we must treat it and so many of the drugs are so harsh that you have to give drugs for the drug side effects.  And yet, to not "treat" could have very grave consequences.  And , somehow these little kiddos endure it all....they truly are my heroes forever and ever.

Parker's brother, Logan, came to see him yesterday with Michael (Dad) and Great Aunt Sandy and Uncle John.  That was such a treat for Parker.  Especially when Dad showed up with a tattoo on his arm, just for Parker.  It says "Kids get arthritis too.  Parker's Purple Playas."  All the nurses and docs loved it too!  Pretty cool, huh!

We thank everyone who has checked in with us and who are continuing to say prayers.  Parker sends love out to all of you!