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.
_____________________

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
__________________

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...

Over the river and through the woods to Children's we go...

We went back to Children's. Dr. H had a baby this week and he was out - so we met with Dr. J. I am so glad we made the decision to switch to Dr. H. His approach, his interaction with us and Bean....we made the right decision to switch. Don't get me wrong, Dr. J is a good Dr., he is patient...just nothing like Dr. H.

The plan. We increase Methotrexate by 50% to 15mg x1 per week. We went down on the prednisone to 15mg 1x per day. The rest stays the same.

We will see how it goes.

The memorable part of today's visit. Bean usually gets stickers after getting her blood draw in the lab. Because we went to Dr. C last week to draw blood, they didn't need to this week.

As we were leaving Bean asked to go to the lab - I almost laughed out loud...I had to explain to the nurses who looked at her, then looked at me, then looked at her again...that there was more behind the ask.

I said Bean, you don't have to have a blood draw to get a Hannah Montana sticker. Would you just like to ask Nurse Rachel for one? The smile slowly grew to include her entire face!!

My child was willing to get a blood draw, just to get a sticker. Talk about conditioning....talk about love for Hannah....talk about the ability to make my child happy with such a simple thing, I love her!

Dose 4

Bean's 4th dose came and went with little fan fair, just 4 extra pills on Friday night.

And the fever returns...and the pain.

Did I speak to soon? At 3am Bean walked into our room...with 103.2 fever, back pain and knee pain. Is it related - is it something different?

Here is my e-mail to Dr. H.

Dear Dr. H,

Thank you for the e-mail and the follow up. The week went well. She started the naproxen on Monday - 2x per day. And here week went well.

Friday she had her 3rd dose of methotrexate and we dropped her dose of prednisone down to 20mg 1x day - from 25mg 1x day (as it had been 2 weeks).

10mg of methotrexate x1 per week
20mg of prednisone x1 per day
15 mg of prevacid x1 per day
1mg Folic Acid - x1 per day
250mg naproxen - x2 per day

Early this morning (Sunday morning) - 3am - Adina came into our room - saying her back hurt, and knees hurt. I picked her up as she couldn't climb into the bed and I realized she was quite hot. She had 103.2 fever. We realized that for the first time, she hadn't had her medicine before she fell asleep - we gave her the medicine and she went back to sleep.

I'm not sure if it was a coincidence that she got the fever and hadn't had her medicine - one dose.
If this is an unrelated illness...
What this back pain is about - lower back pain.

You had asked about the rash in your last e-mail. I'm not really sure if it has come back. It is SO hard to tell as her cheeks are often red from the steroids. And the phantom rash comes and goes so quickly. There have been a few times I think I have seen it, but I can't be 100% sure.

What are your thoughts?

Thanks so much,
L

Dose 3

Friday night Bean got her third dose of methotrexate. Again she didn't have any rection...I have to say handing my daughter 12 pills brings me to tears...it is too much.

But she didn't have any reaction. Life is good.

Dear Dr. H - Dose 2

I composed this e-mail to Dr. H at Children's today.

I wanted to update you on how Bean is doing at see what her results were from her bloodwork from the last visit - what did her numbers look like?

We saw you on Thursday, October 22nd - up until that day she was taking:
25mg of prednisone x1 per day
250 mg of naproxen x2 per day
15 mg of prevacid x1 per day

Bean had her first dose of methotrexate on Friday, October 23rd - she had no reactions that we could tell.
we stopped the naproxen as a trial.
For the past week she has been on -
10mg of methotrexate x1 per week
25mg of prednisone x1 per day
15 mg of prevacid x1 per day
1mg Folic Acid - x1 per day

Bean had her second does eof methotrexate on Friday, October 30th - she had no reactions that we could tell.

However - today, November 1st, she was quite lethargic and tired, she complained of pain in her legs then back and head. Do you think these are these side effects of any of the medication she is on?
I think tomorrow we will start back with the naproxen x2 per day and see how she does. But I was concerned with the pain symptoms she is having.

Also- she has been having trouble sleeping. I think she has only slept through the night 3 times in the past two weeks. Could that be a side effect of the medication?

Thanks for all you help and support,

L & J

Dose one

Bean got her first Dose of Methotrexate last night. We noticed NO side effects today. She had a friend come over and play, which was a great distraction...but really, I don't think she noticed anything bothering her. I am hopeful that it stays this way - though I have no expectations. The medicine builds on itself.

First dose - went off without a hitch....so far.

A plan.

We took a trip to Children's today with Bean.

Bean has been on Naproxen(Alieve):

Nonsteroidal anti-inflammatory drugs (NSAIDs) — These medicines provide pain relief and reduce swelling. Some are available over the counter and others require a prescription. Examples include ibuprofen and naproxen. These medicines can cause nausea and stomach upset in some people and need to be taken with food.

She has also - for the past two weeks been on oral Prednisone:

Corticosteroids (steroids) — In patients with oligoarthritis or in patients with very painful/swollen joints with other types of JIA, these medications are very effective when given as an injection (shot) into the affected joint. In younger children or if several joints are injected, sedation is often used. In patients with more severe widespread disease, these medications occasionally need to be given by mouth as a pill. These medicines when given by mouth are effective, but can have serious side effects—including weakened bones —especially when used for long periods. Doctors generally try to avoid using steroids in children because they can interfere with a child’s normal growth.

Obviously this was a stop gap measure - we needed a plan.

Dr. H laid out three options - this is the information as I remember it....with some internet based research in between...

1. Methotrexate - a disease modifying drug - has 20 years of research.
20 % of children get side effects - stomach/abdominal pain 12-24 hours after taking the medicine, mouth ulcers -- some say hair thinning/loss.
Suppresses production of blood cells.
Need to take folic acid.
Long term possible liver injury.
Need Serial blood testing to check on liver - first every month...hopefully every 2 months after that.
2 ways to administer - oral (pill) or injectable - once a week.
Effective in 30-40% of SJIR kids

Disease-modifying anti-rheumatic drugs (DMARDs) — These medications work by changing, or modifying, the actual disease process in arthritis. The aim of DMARDs is to prevent bone and joint destruction by suppressing the immune system’s attack on the joints. Methotrexate is the DMARD most often used to treat JIA. Other medications used include sulfasalazine and leflunomide.

2. Enbrel - biological modifying drug - has 10 years of research.
It works by blocking the protein molecule TNF and its function (a marker in SJIA patients)
Side effects include decrease in immune system - especially fighting tuberculosis
Administered by injection once a week
Effective in 50% of SJIR kids

3. Kineret - a newer biological modifying drug - it is newer.
It works on blocking the protein molecule IL1
Side effects include decreased in immune system -- especially for severe infections like bacterial infection, pneumonia, sinusitis
Administered by injection daily...though it burns at the injection site
Effective in 80-90% of SJIR kids

Biological modifying agents — Biological agents are medications that directly target molecules or proteins in the immune system responsible for causing the inflammation. They are used to treat children with more severe arthritis that is not responsive to other medications and are given by injection or by infusion. Etanercept (Enbrel), infliximab (Remicade), adalimumab (Humira) and anakinra (Kineret) are examples of this type of medication.

Also - one we know but didn't talk about yet:

Physical and occupational therapy - Exercise, physical and occupational therapy can help reduce pain, maintain muscle tone, improve mobility (ability to move) and prevent permanent handicaps. In some cases, splints or braces also may be used to help protect the joints as the child grows. Special accommodations with schools may be needed to adjust for children with limitations from their arthritis. The Americans with Disabilities Act (“504” plan) can help facilitate these issues.

After much discussion....we chose the first. Methotrexate.
It is the one that is least invasive and the most tested...when there are no good decision...ya have to pick the lesser of the evils.

Bean gets her first dose tomorrow night.