Procrastination...

I sat down to write this post on January 14th, but I was afraid to put into words what I was feeling. On that Thursday, Bean and I took what had become our monthly trip to Children's, we are SO lucky that it is less than an hour away. See, we started off going in once every two weeks, then for 4 months it was every four weeks.

Bean has started really liking our trips to Children's. For one - we have taken away the need for the blood-draws there - as we have been doing them at Dr. C's and 2nd - the ART ROOM! A magnificent place for children who are staying in the hospital or in for outpatient clinics to spend time and not focus on the scary - but to focus on what the beauty of creating a masterpiece.

Each time we are at Children's and wait for our turn to see Dr. H - Bean gets to create - to be a part of something so beautiful. It is during these visits that we get the opportunity to meet other patients and their parents.

Bean and I talk about medicine side effects, hair loss, vomiting, loss of limb, looking different...acknowledge people's differences and similarities - but it is also a real opportunity for us to be reminded what we have to be thankful for.

This particular day another girl, about 15 was there with her mom and brother - they had come in from a ways away. We spent about an hour on and off with them in the art room. They're a lot of parts to our routine there.

1. Sign in at main desk, write down list of all medications child is on - and why
2. Go to art room and wait....this could be 10 minutes...could be an hour
3. Called back by tech to take vitals - weight, height, temperature & blood pressure
4. Go to the art room and wait ...this could be 10 minutes...could be an hour
5. Called back to room to wait for Dr. H...could be 10 minutes, could be 45 minutes
6. Physical exam - conversation and plan
7. Go to the art room and wait - for either blood draw, or prescriptions...could be 5 minutes, could be 30
8. Set up appointment to come back

Bean and I were on step 4 when this young ladies mom walked in, mouth hung open...though I could see the joy (not fear) behind the shock..."we don't have to come back for a year!" She didn't know what to do or how to respond...with the information. We spoke about it for a minute, the fear of what would happen in that time. Would she able to spot any signs and symptoms that would require her to come back sooner? A year...I thought to myself, and even wondered out-loud what - what would it be like to be told to come back in a year?

The fantastic mom...who has been through hell and back looked at me and said - you'll get told "come back in a year" too - she was comforting me.

It was at that moment that that a flood of emotions came through me...I worry about my little girl - I even panic about her...but her prognosis is no where near as dire as these other children we meet in the hemotology oncology department.

At that moment in time, I had the ridiculous guilt of my child not being as sick as these other children...

There, I said it out loud. How ridiculous is that of me? Guilt that my child is not as sick as these other children...that this mom took the time to support me.

We moved on to steps 5 - 7....and then it was time for step 8.

Dr. H met us in the art room - handing us our prescriptions and the check out form...written clear as day - return in 6 weeks. While it wasn't the 1 year mark, it was 1.5 times as long as we had been coming up till then. That fantastic mom...who was still on step 8 even an hour later...looked at me and said, you'll get to your one year...one step at a time.

I shook Dr. H's reassuring hand....The fantastic mom gave me a hug...and Bean and I were on our way back to school.

I was afraid to get excited. I was afraid to be thrilled with the news...we have been down the "good news" path before...and burned. I decided to keep the good news to myself, still waiting for the other shoe to drop.
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Bean and I went back 6 weeks later - Thursday, February 25th - we went through the motions. We followed our steps 1-8. Stopping to talk about hair loss and what would happen if she lost her hair, the picc line inserted a girls arm, or the pump connected to another girls upper chest.

Between steps 7 and 8 Dr. H came in - giving us the news that there was no visible sign of swelling or active SIJA...her blood work looked good - the methotrexate seems to be working. We were to continue on the same treatment path...and come back in 8 weeks!

This time I allowed myself to post the good news on my facebook status - it read:

Great visit with Dr. H...no symptoms visible...we don't have to go back for 8 weeks! That is AFTER Passover!

I still have the pit in the bottom of my stomach - the one that is waiting for the other shoe to drop....at the same time feeling guilty that we get 8 weeks to not have to come back, while others we get to know at Children's will not have even been released during that time.

For now I worry. But I am grateful and thankful that we haven't found the other shoe.

Sometimes reading can be a positive...Methotrexate, Mortality & Pain

Three of the latest articles I'm reading...you can find the links to all the articles I am reading at the side of the blog in: Articles I'm Reading
Click on the title of the article to read it in it's entirety. I'm pulling out pieces of note to me, but they are not the full article.
Kids in Remission May Be Able to Stop Meds Sooner
Deaths Due to Childhood Arthritis Drop
The Importance of Pain Management
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Paranoia, when does it go away? Does it go away?

I look at Bean every day.

Well, to be fair I look at ALL my children every day. I give them a once over, checking on parts, boo boos, hairs, nails, toes, noses...it is a two fold mission...I want to make sure they are ok, safe and healthy.

Really though, I try to make sure I soak them in. I want to remember their parts, know each "beauty mark," each freckle, each crevice, each spot.

Bob's two birthmarks - one that I noticed on the day that he was born and knew no one could ever mix him up...and the other the memory of his NICU stay...

Belle's gentle curve to her collar bone with beauty mark that seems to have been placed on her ivory skin by the model gods (a la Cindy Crawford),

Bean's long skinny fingers with beautiful long nail beds...a hand model as it were...with not a freckle on any of them, her beauty mark of prominence is just off center of her midline, right by her hairline....

Puppy's fantastically edible earlobes with an adorable beauty mark right in the middle of his right ear...

Bean's Journiversary...

I have been remembering last year's 22 days of sheer panic. The anniversary of this journey, to take a conjunction from a dear friend, our journiversary.

Each day that passes without a fever... I am thankful,
each day that passes without complaints of pain... I am thankful,
each day that passes with less complaints of stiffness... I am thankful.

I am thankful that we started this journey a year ago and not this year...
we have gotten two blizzards in the past week, the first 30 inches, and the second 2o inches...with 50 inches of snow on the ground this week I can't imagine what we would have done last year...spending those days in the hospital and not able to switch off with J, having one of us snowed in with the other 3 children.

Did I mention H1N1...last year no one knew of such a thing...this year our three other children would not have been allowed to visit Bean in the hospital...I don't know how any of us would have handled that one either.

See for your self below...

Children's hospital didn't have any Internet access and cell reception wasn't great either. So our time there was spent updating friends and relatives through facebook postings from my blackberry and a photo journal of pictures taken on that same blackberry. Some were posted to facebook...but most weren't "post worthy." I am now rethinking that and want to make sure I remember.

Bean's first night in the hospital...she did smile and she did have a rash.

View from of our room

"Dr. Will" - Bean's resident - playing Zingo with Bean - God bless Dr. Will wherever he is now, he truely made a difference during our stay

Bean's Room and set up - signs from friends at school, art supplies from the volunteers at the hospital, and a "ducky attention diverter" from B and family!

Grammy came and took some much needed naps together (especially so J and I could go home to the 3 other kids one night together).

One of two pairs of PJ's I will always associate with her stay...a picture of her knees that didn't "work"...a picture of my 5 year old who couldn't walk....in a stroller

Bean willed herself to sleep during her bone scan so she wouldn't need another "needle!"

The fantastic social worker that helped Bean and her fellow patient deal with all the procedures they were undergoing...and all the blood draws!

Playroom right next door to Bean's room where we spent lots of time.

Even when Bean had a fever and was too week to participate Belle, Bob and Puppy got to be close by - but loved the day the dogs came!

The playroom that Bean, when she was up to it, was able to have a regular playdate with her brothers and sister!

Bean's eye on her stay :
(including the other PJ's that I will never forget)

Bean and the family right after she had her bone marrow test to make sure she did not have leukemia...waiting for results....and then 2 hours later...

The sun set outside Bean's room as we packed up to leave....together, as a family.

Ironic - the sign as we were leaving....

I'm thankful that this journey started last year and not this. I hope the next anniversary is one that brings us closer to a cure.

Making it real.

After all the research and googling I have been doing a friend's mom C mentioned the Arthritis Foundation. She mentioned a walk, information, research...I kept hearing her talk, but my mind was going...

The first thought that popped into my head?

Arthritis Foundation...that isn't my thing...

See, for the past 7 years our family has focused our time and fundraising "walks" on the Race for Hope J's dad died October 9, 2002 from a brain tumor.

Bean was named for him.
She was born on my in-laws' anniversary.
A bright light after the sad loss of a 57 year old gentle and kind man.
Brain cancer is our cause...Arthritis...

If I make the call, does that make the journey real? Do I make that call?
I don't know if I'm ready for that.

Well, I didn't have to be ready, with my permission, my friend's mom - C - the wife of a Rheumatologist, made the connection for me and had the Arthritis Foundation contact me.

They asked if I wanted to get involved...if I wanted a welcome package. I heard the words come out of my mouth "yes."

But it wasn't really what I wanted to say. I wanted to say, no - I don't want a welcome package, I don't want to get involved...I don't want my daughter to have arthritis...I mean, if I do say yes it means this is real, that my baby has arthritis...that she is on a chemo drug...that she has pain...that she has to deal with this and not just get better while we wait it out.

But, I said yes.

Today my package came - Thank you C for helping me take this first step:

When reading is not a good idea...

My daily Google alert led me to this article. Do I understand it? Maybe. What does it mean? I have no idea.

But it is education, and a direction to research farther. (SOJIA stands for Systemic onset juvenile idiopathic arthritis)

The section below is in plainish English and might be helpful for understanding the disease. Bolding the parts that got my eye.

SOJIA represents about 10% of all the cases of JIA. The course and prognosis of SOJIA is heterogeneous, as fifty per cent of patients have a monophasic course with resolution of the symptoms, while the remaining fifty per cent develop a chronicrelapsing and remitting course and a very severe form of polyarticular chronic arthritis. Patients with SOJIA also display an increased risk of developing hemophagocytic syndrome, a potentially fatal complication (Cassidy, J T and Ross, E. 2001. Textbook of Pediatric Rheumatology, 4th ed, Books on Demand Publishers, Visby, Sweden; p. 218-321).

Children with SOJIA present with severe systemic symptoms (fever and rash) that usually precede the development of arthritis for weeks to years. The high spiking fever, which is the hallmark of this disease, usually follows a quotidian patternwith 1-2 spikes/day. Patients look characteristically well when the fever is not present, but become quite ill with the spikes. In many patients, the fever is accompanied by a salmon-pink rash that becomes more apparent with the fever. Additionally,children with SOJIA may have hepatosplenomegaly, lymphadenopathy, pericarditis and other manifestations of serositis. These systemic manifestations may last from weeks to months and eventually tend to subside to be followed by the development of chronicarthritis. About 50% of patients will present oligoarticular involvement and will eventually recover. The other half will evolve into a polyarticular pattern, the prognosis of which correlates with the number of joints involved six months into thedisease course. Up to 48% of children with SOJIA will have active arthritis ten years after the diagnosis is made (Cassidy, J T and Ross, E. 2001. Textbook of Pediatric Rheumatology, 4th ed, Books on Demand Publishers, Visby, Sweden; p. 218-321; andLomater C, et al., 2000. J Rheumatol 27:491-496).

There are no available specific tests to establish the diagnosis of SOJIA, nor are there known prognostic indicators to ascertain its clinical course. Fever, anemia, leukocytosis and elevated erythrocyte sedimentation rate (ESR) are the maininitial features of the disease, sometimes lasting several months before the diagnosis can be established. As these symptoms are nonspecific and can mimic infections, malignancies, and other diseases, patients undergo a series of very costly diagnostictests and prolonged hospitalizations.


One of the most serious complications in patients with SOJIA is the development of hemophagocytic syndrome, also known as macrophage activation syndrome (MAS) (Cassidy, J T and Ross, E. 2001. Textbook of Pediatric Rheumatology, 4th ed, Books onDemand Publishers, Visby, Sweden; p. 218-321). The hemophagocytic syndrome, which can occur as well in the context of infectious and neoplastic diseases, is associated with serious morbidity and/or death. Its etiology, especially in the context ofSOJIA, is unknown. Familial cases of MAS occur as the result of defective viral killing due to mutations in genes like perforin (involved in the release of granzyme by cytotoxic T cells/natural killer cells to target cells) or Rab27 (involved in thecontrol of granzyme vesicle degranulation).

Therefore, SOJIA remains a chronic inflammatory disease of unknown etiology for which a specific treatment has not been determined. Despite extensive study, multi-drug treatment of patients with SOJIA is similar to that of oligoarthritis andpolyarthritis, which depends on the phase (systemic phase versus arthritic phase) of the disease and on the extent of involvement. While a minority of patients does well with non-steroidal anti-inflammatory drugs (NSAIDs), most children require the useof oral and/or parenteral steroids as well as methotrexate to control the symptoms. Intravenous immunoglobulin (IVIG) has been used in recalcitrant cases. Most recently, anti-TNF therapy (e.g., etanercept and infliximab) is being added to theseregimens. Nevertheless, there are some limitations and risks associated with these drugs. For example, long term treatment of these patients with immunosuppressive drugs such as methotrexate and steroids have been reportedly associated with an impairedability of the patients to eliminate viral infections. Intravenous immunoglobulin treatment is accompanied by the risks associated with transfusions of blood-derived products. The present inventors have found that SOJIA patients do not respond as welland require higher doses of anti-TNF agents to control the symptoms than any other type of JIA. Therefore, there is a continuing need to identify effective drug treatments for SOJIA disease.

Too good to be true.

Bean took her 14th dose of Methotrexate last night. She didn't want to eat dinner it just isn't like my little beauti. She said her mouth hurt so I took a look and there it was, her first side effect - a mouth sore.

For 14 weeks she had no side effects...I guess it was just too good to be true.

We had some medicine to put on it - bad tasting medicine, bad smelling medicine...medicine that needs to dry before you can close your mouth our eat/drink anything. Bean is one of the worst medicine takers I know...

But our amazing friend B was over for dinner with her family, this is the woman who (in adition to J) helped me deliver all four of our children. If she could get me through that - she surely get Bean through this. Well she did! A bit if distraction, a bit of fun and we did it - She counted "black cats" and with that we were able to distract Bean enough to put medicne on and sooth her pain.

I will write Dr. H an e-mail to see if we increase the Folic Acid or if there is something else we can do. But for now - we are counting "black cats!"

1 black cat
2 black cats
3 black cats...

One year tomorrow...

One year tomorrow....I need to say that again. One year tomorrow. This journey began one year ago tomorrow. I watched my Bean dance today...with every joint of in her body - her hips, her knees, her elbows, her wrists, her ankles, her sholders, her neck...
One year ago tomorrow this journey began. But today, she danced!