DuPage Children's Museum

Jessie and I took the kiddos to another Children's Museum while we were back in Illinois. The kids always had a great time exploring and we all went home exhausted.

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2nd Treatment Pictures

Thought we would share a few pictures from our day at Lucille Packard from Keira's 2nd Treatment. She is such a trooper!



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2nd Monthly Treatment, Evaluation and Recap

I should have posted this about a week ago after Keira's second treatment, but life got away from us, which is a good thing considering that most of the time we're now chasing our little daughter all over the place :)

On Monday November 15, Keira had a her monthly clinical visit, where her primary doctor evaluates her and checks in to see how she is doing with her OMA symptoms. Keira also had her weekly Physical Therapy session, which helps us know how her motor skills are progressing. This day served as a good checkpoint for us to gauge how Keira has progressed over the course of her first full month of treatment.

Now if you've been following Keira's story all along, you've probably received updates on Keira's improvements and milestones over the course of this past month. But it helps to take stock in all that has happened:

• When we left her last clinic visit on Monday October 18, Keira could barely stand with support, couldn't walk, and was still having some behavioral episodes and sleep disturbances.
• A week or so after that, Keira stood up and started walking
• A week or so after that, Keira started sleeping 10-12 hours through the night
• A few days after that, Keira started sleeping solo in her own crib through the night
• And since then, we've seen continued improvements in her sleep, mood, behavior, and motor skills

From her doctors' perspective however, they only remembered the Keira that was immobile from the last clinic visit, so you can imagine how elated they were when they saw little Keira bouncing all over the clinic.  We had called one of her docs shortly after she started walking, so she was aware of her improvement, but it's one thing to hear about it and another to see it.  She was so excited, that she called her attending physician who came over from her office across the street to see Keira first hand.  Needless to say, she was equally as excited and amazed by Keira's improvements.  Actually every doctor that came in to see her (from both the oncology and neurology teams) were pretty surprised to see how well Keira was doing - so much so that Crystal and I were a little taken aback by the enthusiasm, probably because we had no other basis for comparison or any expectation around her improvements.  While we were very happy with how Keira had been progressing this past month, we hadn't realized that this was on the very positive end of the spectrum.

The clinical trial that Keira is part of has a specific treatment protocol that adjusts drug dosages/frequencies based on how patients are doing.  The evaluation scale consists of five dimensions for OMA symptoms that are graded each time she goes in for her monthly clinic visit:

1. Stance
2. Gait
3. Arm/Hand Function
4. Opsoclonus
5. Mood/Behavior

Based how patients are graded on this scale dictates drug dosages/frequencies.  Keira's grades have progressed so well to the point where they are cutting her steroid dosage in half now.  While this is undoubtedly very positive news, we're also a bit nervous and anxious about it because we're not sure exactly how Keira will respond to being tapered off these drugs that seemed to contribute so much to her improvements.  We've heard from other parents that behavioral and mood flare-ups are common when steroids are reduced/removed, but the longer term side-effects of such high steroid dosages are what we're concerned about now, so on balance, the tapering is the right thing to do (and is exactly what is called for in the protocol).

All of her improvements are very encouraging and as parents we're pretty happy to see Keira able to do the things she loves so much.  However, we still need to be aware of the long road Keira has in front of her as we manage her treatment over the course of this coming year and beyond.  Her immune system is still only mildly suppressed, but with each subsequent IVIG/Cyclophosphamide treatment, it will be further suppressed so we'll have to continue to be vigilant about preventing infections/illnesses.  The steroid tapering is something that we're both nervous about so we'll be monitoring her mood/behavior over this month to see whether or not this is affected.  Finally, there is also still the general uncertainty around the waxing and waning nature of this disease, where certain symptoms could flare-up for no apparent reason.  Even this past month with so many improvements, we did see tremors return then subside, we noticed that Keira was tripping more on certain days, and we still see some randomness in her behavior, and each time we're not sure whether we're seeing the beginning of a trend, a minor flare-up, or if this is part of normal toddler behavior.  :)

Taken as a whole though, this past clinic visit validated much of what we had been witnessing with our own eyes over the course of the month, and then some.  I don't think that we could have asked for anything greater than what we have already received.  

We hope that you all have a Happy Thanksgiving.  We have so much to be thankful for this year and appreciate all the love and support we continue to receive from all of you!

Thanksgiving

We have so much to be thankful for this year. It was a blessing to be able to celebrate with family after all that Keira has been through. Vish and Latha joined us from St. Louis so we had a full house!



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Kohl Children Museum

Since we have a membership to the Bay Area Discovery Museum, we thought we would take advantage of the museums in Illinois that have "partner" memberships. It was a little chaotic the day before Thanksgiving with all the schools being on vacation but the kids had a lot of fun. Naveen and Andrew braved the day with us, although I think they were a little overwhelmed by the number of kids running around and were more than ready to head back home at the end of the day. :)



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November Fun!

Keira had lots of visitors in the month of November, which of course resulted in fun for all of us!

• Boo Boo came out to help with the transition when Naveen went back to work
• Sridhar was in town for work and joined us one evening for dinner
• Jamie and Maya came up for an afternoon of arts and crafts
• Glory and Soraya came up to the city for lunch and some playtime
• We went on our first family bike ride with our new fancy bike trailer
• The Jalal family also stopped by on their way to the zoo
• We had lunch down at Google and also did some cooking in the kitchen
• Supriya, Sridhar and Krishna came up from San Diego to babysit Nip over Thanksgiving week (luckily we got to hang out with them for a day before we had to leave!)

Check out the pics!

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Light a candle for Reid - November 18, 2010

OMS has affected our lives forever - we are quickly discovering an entire OMS Community where other children and adults are affected by this rare neurological condition. November 18, 2010 is the one year passing of Reid Nelson. Reid lost his battle to OMS a year ago due to complications with treatment. We can only imagine how difficult this day will be for his family and friends. If you can find a moment to light a candle in his honor it would be much appreciated.

You can read more about Reid's story here.

Second Treatment Cycle Done!

It was another long day of treatment for Keira proven by the fact that we drove to and from the hospital in the dark!

Arriving at LPCH at 7am we thought the day was off to a good start, however, after many failed attempts at an IV, we were all starting to get a little frustrated. The FIFTH poke was successful but by this time it was 10am! As we have mentioned before, her treatment cycle is about 10 hours.... if you do the math that means we would not be done until 8pm! Luckily, they were able to administer the anti-nausea medication, before the Cytoxin, orally, (knocking off thirty minutes) which made our end at 7:30pm... still a very long day for a 19 month year old.

All things considered Keira was a rock star. Last month she could barely sit up on her own and was not mobile at all. For the past several weeks she has been on the go, non-stop, so I was a little concerned with how we were going to be able to keep her in a small hospital room, hooked up to an IV, for such a long time. It was tough at first as she definitely wanted to be off the bed and moving around, but after the first few hours she was content to sit with me on the bed. We watched a lot of Elmo (on TV and on the computer), we played with Bear, we colored, we ate - breakfast, lunch and dinner, we added her new Beads of Courage to her necklace... we pretty much did whatever we could to keep her entertained.

Once the IVIG and Cytoxin were completed we were allowed to take Keira out of the Oncology Clinic and walk around during the three hour hydration flush. It was interesting to see how much of the hospital K remembered from her time there at the beginning of October. We went up to the third floor and said hi to some of the nurses we met on our first few days in the hospital and Keira even scored a free balloon. :)

I have to say, we are extremely proud of our little girl - her sunny personality is an inspiration to us. Keira had a big smile on her face the entire day and made friends with every nurse on the floor. She was super cooperative even when things must have hurt and always told the nurses thank you - after failed IV attempts, vitals, and medication.

A big thank you to our family and friends for their support these past few months. We could not get through this without all of you. We so appreciate all the love, prayers, words of encouragement, generosity, positive thoughts and, of course, the food. I don't think we have ever eaten so well and it is nice to have one less thing to worry about at home.

Fun with Boo Boo!

We thought we would share some videos from our week with Boo Boo. My favorite quote this week, "Keira is the opposite of a nap!" Yes, it's true, she is constantly moving and playing, and we couldn't be happier about it. :)

Keira In A Box


Raining Alphabets!


Ring Around the Rosie

OT, PT, Post-Op... and Blood Draw!

What a busy week that has been full of appointments, appointment and appointments!

Keira did great for both her Occupational and Physical Therapy appointments at the beginning of this week. We have seen some of the tremors reappear since last week. There is a slight tremor in her right hand as well as a more pronounced shaking in her right leg. I am happy to say that these "wiggles" are not stopping her one bit!

Keira is insistent that she can do it herself and is getting pretty good at getting the applesauce into her mouth. The leg tremor makes me nervous, especially with the two stairs we have in our house but again she is one determined little girl who has taken the phrase, "Practice makes perfect," to heart... she goes up and down those stairs all day long!

Our PT this week was the same therapist that we saw when we were in the hospital and she was amazed at how much Keira has recovered from the OMA. We talked a lot about how this syndrome can be frustrating for all involved because of its waxing and waning nature.... you just don't know what the next day will bring. She also shared many activities that we can work on with Keira to help keep those signals moving from K's brain down to her body. In typical Keira form, she was bouncing all over the gym.

Check out this video:


Wednesday afternoon we headed over to the surgery clinic to see Dr. Haartman for Keira's Post-Op. He was so happy to see her walking and in a good mood. She was a little apprehensive but by the end of our appointment, she was giving Dr. Haartman high-fives and knuckles. He reassured us that she should have no problems with the incisions and that with time the scars will continue to heal.

Keira also spent a couple of hours at Emy's house in between appointments. Our goal is to get our little girl back into her normal routine, which means being back at daycare with her friends. She had been asking for Emy.... Bryce, Soraya and Maddy so we thought that a little socialization might be therapeutic as well. In fact, many of the things that we are suppose to be doing with Keira (kicking/throwing balls, pushing carts, playing at a short table) for her recovery are things she does at Emy's house every day. :)

To finish up this busy week we walked over for K's Friday Blood Draw. While she anticipated the poke and complained a little when she saw the chair we have to sit in, the phlebotomist was impressed the she didn't cry when he actually poked her. What a brave little girl.

Halloween

Check out the pictures of our little girl this Halloween. Keira wore her butterfly costume in the morning and was a darling little insect!



Although Keira enjoyed fluttering around the house in her tutu, we thought that it was more appropriate for her to be a little ninja in the evening. Keira is one tough toddler and with as much as she has been through in the month of October and the continued treatments that she has to endure, well, it just seemed like a good choice.



Here's a video of little miss ninja trying to do ninja things to a baby swing:



We spent the afternoon with some of her little buddies and went trick-or-treating in the evening. Last year Keira was oblivious to the candy part of Halloween... this year, she totally got it and very much enjoyed her first 3 Musketeers Bar.



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