Oh my, how our little ghost has grown!

Last October I painted Keira's feet to make little ghosts for Halloween. In true teacher mom fashion, we took out the white tempra again this year... check out how our little ghost has grown!

Video: I Swear This Wasn't Happening Yesterday

Have you ever gone to the doctor because something was bothering you, only to get there and feel fine? We kind of felt like that when went in to Keira's Physical Therapy evaluation this week. Remember, less than a week ago, Keira wasn't walking, standing, or even crawling. And now as we are talking to the therapist... well, it's better you just see the video for yourself :)

Making Keira's Medicine BEARABLE

Part of Keira's treatment for the OMA include morning and evening medications. When we were at the hospital we had to hold Keira's arms down while the nurse pinched her cheeks and squirted in the liquid medications... pretty awful for all 3 of us. :(



Once we got home, we knew we had to find a way to make this ritual as fun as it can possibly be (these medicines all taste quite bad - I've tried them myself!) Bear is one of K's favorite buddies and we decided that he too was going to be taking part in this new medicine ritual.

Thankfully, it has worked like a charm. Keira is always so generous to let Bear take his medicine first and she follows it up with offering her milk or water to him so that he can rinse that icky taste down.



We are so proud of both Keira and Bear for being brave and look forward to the day when this medicine is no longer needed.

Video: Thursday Oct 7 - The Will To Stand

So the same night that little miss K decided to try on her leg warmers, the burst of energy continued into the evening. In these videos, Keira is still fairly shaky, uncoordinated, and not really talking much. However, what's simply amazing was her determination to try and stand and crawl despite what her body would let her do.

Video: Thursday Oct 7 - Gettin' Coordinated with the Girls

Crystal and I have been at home this week working with Keira on her fine and gross motor skills. We've both been amazed at her will power and determination to re-learn many things that she had so recently mastered. One can only imagine how frustrating this would be for an adult, but we continue to be amazed at how little K will not give up, and at times seems completely unfazed by all of this. Her innocence, curiosity, and thirst for discovery have been a strong source of inspiration for us this week.

However, to put this in perspective, we think it is important to share some of these older videos with our friends and family, especially those who were not able to visit in person. It's important because words can only go so far in explaining Keira's OMA symtoms and her struggle. Also, it's important so our friends and family understand where she was just a couple of weeks ago so they can truly appreciate how much she's having to battle back.

This is a video from when we were in LPCH, only 3 days after Keira's surgery, and 6 days after the last video of Keira trying to stand. To truly appreciate this video, the day before Keira's surgery, she was not walking, not standing (even with support), couldn't sit without support, her coordination was severely impaired, she wasn't talking much, and her mood was one of general discomfort. It felt like Keira's general personality was, understandably, simply not there.

As a testament to her stubbornness and determination, on this night having a slumber party with Crystal and Aunt Jessie, Keira got a burst of energy and also started getting some of her strength and coordination back. I think most all of us were pretty happy and pleasantly surprised to see this happen so quickly. You can tell from the video that Keira is still a bit shaky, but she's standing talking more, she has more trunk strength when sitting, and most importantly she's able to take on/off her leg warmers which is a key skill in gauging her fine motor coordination and one that she wasn't able to do just a few days prior.

Also, you get to catch a glimpse of Keira's room (for nearly two weeks) at LPCH which was superbly decorated by Keira's Swat Team of Aunts :)

Pumpkin Patch

Here are the pics from our trip down to Half Moon Bay to get Keira's pumpkin. She wasn't in the best mood, but considering all that she had been through, she made the best of it. I think her favorite moment might have been tasting pumpkin pie for the first time.



Play slideshow - 23
View photos individually


You can also check out the following video on little K on the move. This was a few days before she started walking on her own.

Video: Friday Oct 1 - Difficulty Standing

We had been admitted to LPCH the previous day and they had run a number of tests and scans. Her brain and spinal MRI had come back normal, which at this point, was a HUGE relief given that the most logical explanation for the symptoms and the quickness of their onset was a brain or spinal tumor/mass/hemorrhage. However, we were naturally still concerned because her conditions were continuing to deteriorate. One team felt that this was caused by a viral infection, whereas her pediatrician continued to cover all the bases by examining other (and more rare) potential illnesses.

On the previous day (Thursday Sep 30) when we were admitted, Keira was very clumsy and having issues walking and balancing. She was exhibiting hand and arm tremors as well.

On Friday morning now, she was having difficulty even standing and her hand/arm tremors seemed to have progressed into general body shakiness. Also Keira's mood and attitude were also being affected now.

I took this video so that I could show her doctors her shakiness when sitting, her difficulty standing, and generally shakiness and malaise.

This was about 3 hours before they told us that they had found a mass in Keira's adrenal gland and their diagnosis was that of Neuroblastoma + OMA.

Video: Wednesday Sep 29 - Swinging In Dolores Park

Crystal and I went to Dolores Park to let Keira enjoy some of the fleeting summer air after we had visited the doctors twice this week. Although you can't tell from this video, both Crystal and I noticed that Keira's coordination was definitely off at the park, especially when comparing to previous park visits where she would run and climb play structures with ease. This was the evening before we were admitted into Lucile Packard Children's Hospital. It's hard to imagine that even at this point, Keira's attitude, speech, temperament, and most of her general fine and gross motor skills were all in tact, it just felt like she was a little clumsier than normal.

Video: Saturday Sep 25 - Dismount Off The Couch

Here's another video of Keira a week after the previous one. Ajji and Thatha (Grandma and Grandpa in Kannada) were in town visiting and Keira was demonstrating her elegant dismounting skills. This was the first day that we actually noticed the slight hand tremor in her right hand. However, as you can see from the video, nothing else seemed to really be out of order. Make sure you click on the blog link below to see the video.

Video: Friday Sep 17 - Our Happy Hyperactive Keira

We got around to looking at some old videos that we hadn't downloaded from the memory card yet. Aside from most of these videos being entertaining in their own right, it actually provides some context to see where Keira was prior to the onset of the Neuroblastoma/OMA symptoms.

This one is from Friday September 17, a week before we noticed the slight hand tremor. I think I had just gotten home from work and Keira was a little wound up :)

Mellow afternoon

I took this the day after we were discharged from the hospital and were taking a stroll around the neighborhood on a cloudy afternoon.   It's hard to imagine from the picture all that little Keira has been through.

41 Beads of Courage

When we were at the clinic this past Monday, we noticed a flyer for a cool program that LPCH called Beads of Courage.  It's for kids going through treatments for serious illnesses.


We thought it would be a fun activity for Keira to collect beads for all of the treatments and procedures she's already had done, as well as a fun (well as fun as it can get) incentive for Keira to collect more beads every time she's back for her treatments.  

Here's Keira's tally so far...41 beads in under 3 weeks, not too shabby :)


And here's a pic of Keira's Beads of Courage as of October 21 2010.

First Treatment Cycle Done!

Keira was an absolute trooper for her first cycle of treatment this week. On Tuesday she endured getting an IV at 7:00am, followed up by blood draws and 5+ hours of IVIG treatment and a flush. This ended at 2:30pm and we promptly went to her Occupational Therapist (OT) for about another 1.5 hours of OT evaluation, testing her fine motor and developmental skills. The OT was quite impressed with Keira's abilities despite having regressed in her fine motor skills and strength due to the OMA.

On Wednesday, the marathon day, we were back at LPCH bright and early at 7:00am and started her second IVIG treatment around 7:30. This ran again for 5+ hours followed by a flush, then ~1 hour of Cyclophosphamide, followed by 3 hours of hydration. We didn't leave the hospital until 5:30pm. We were absolutely impressed with Keira's mood and patience all day. Sitting in bed attached to an IV for 10 hours would drive anyone crazy, let alone an 18-month old. I was also personally impressed with Crystal's mood and patience as well, given that she spent most all day on the hospital bed keeping Keira company. We had Poornima and Abhi stop by and bring us lunch, and then Aunt Jamie hobbled on by in the afternoon with some coffee, and finally Uncle Raj paid us a visit later in the day. The visitors really helped break up the day and allowed our little social butterfly to show everyone all of her new tricks first hand (like saying "Isotope", "Immunoglobulin", and yes even Jamie heard her say "Cyclophosphamide").

We're back at home today recovering from the two days of intensive treatments. There are some notable side-effects that we're right now waiting to see if/how they surface over the next couple of days. This should give us a good understanding as to how Keira will react to the drug treatment going forward so we can better plan and manage the side-effects, but for now, given that she just had her first treatment, it's a wait-and-see game. The IVIG can cause headaches, fatigue and irritability, and the Cyclophosphamide can cause nausea, stomach upset, and hair loss/thinning.

Going forward, we'll spend 1 day a month for a clinic visit with her doctor (evaluating her motor, cognitive, and developmental skills) followed by a 10 hour day of IVIG + Cyclophosphamide. Keira will have to have a blood draw on a weekly basis to monitor her blood cell counts, but luckily there is a lab only blocks from our house in SF, and this will only require a pin-prick, not a vein poke. Furthermore, we'll likely be on a bi-monthly Occupational Therapy cycle, but potentially a bi-weekly Physical Therapy (PT) cycle to help with Keira's loss of gross motor skills like walking and balance. Our first PT evaluation is scheduled for next Wednesday.

Finally, Keira can get a few days of rest before her next appointment, and a full month before seeing another IV.

Cyclophosphamide!

While I couldn't get Keira to say Cyclophosphamide (yet), we are now on this treatment and should be 2/3 of the way through the day!

Marathon Treatment Today

We're back at clinic today for Keira's second treatment. This will entail 5 hours of IVIG (started at 7:45am) followed by 2 hours of Cyclophosphamide, followed by 2 hours of hydration. Luckily we were able to preserve Keira's IV last night so they didn't have to poke her again which was great.

Some people have asked if Keira will lose her hair from the Cyclophosphamide treatment (which is a chemotherapeutic drug). We're not entirely sure about this. Her dosage and frequency are lower than those of patients getting chemo to treat cancer, so her doctor says there is a chance that she may not, but everyone reacts differently. Rest assured though, if Keira loses her hair, she won't be the only one in the family to do so :)

Immunoglobulin!

Not many people believed me when I said Keira had learned how to say the word "isotope" last week when she was getting her MIBG "radio isotope" scans. Well here's one to top that one that I caught on video :)




As you can see from the video, Keira is in good spirits and up to her silly antics. She had to get poked for a blood draw and the IV, and after being in the hospital for two weeks, she handled it like a pro.
Hopefully this will last because the nurse just told us that it will take 4.5 hours for the IVIG to be administered :(

Getting Ready For My First Treatment

Eating some puffs and hanging out. 

Long Week Ahead

It's been great being back at home for a few days and it's been good for Keira as well to try and get re-adjusted into a familiar and safe environment. It was also great to have Chuck and Lara in town for these past few days to help out around the house and let Mom and Dad have some "me" time to try and decompress and re-charge, especially for the upcoming week which will be pretty packed.

Today, we went down for Keira's initial clinic visit which laid out her OMA treatment plan for the next year. Poornima and Abhi also came down to give Keira some additional moral support and we were also able to squeeze in a nice lunch with the crew between doctor appointments. This was the first time we've been able to have lunch out with Keira and while we were a bit nervous, Keira was in a great mood and did great.

After, because Keira will be in a clinical trial, Keira had to sit through 2+ hours of a Neuro-Psychologist evaluation to baseline her motor and developmental skills.

Starting tomorrow, Keira will receive her first treatment of IVIG and Cyclophosphamide. The first treatment this week will entail 2 days of IVIG treatment for 3+ hours each, along with 1 day of Cyclophosphamide treatment for ~2 hours. This will basically take up the remainder of the week for Tuesday-Thursday and we're starting out Tuesday morning with the IVIG treatment at 7:00am. The treatments will also involve a blood draw (poke) along with placing an IV (poke) :(

Tomorrow, we're also starting out with a Occupational Therapist evaluation in the afternoon as the doctors want to try and engage Keira's fine motor skills so that she can maintain the muscular strength and muscle memory while the drugs aim to bring down the neurological symptoms. Next week we'll be working with a Physical Therapist who will help do the same therapy for Keira's gross motor skills.

After this week, we'll be going back for IVIG and Cyclophosphamide treatment every ~28 days, and all of our subsequent treatments should be able to get done in a single day, which will be great.

The IVIG and Cyclophosphamide may have some side effects (nausea, headaches, fever, irritability, etc.) for the days following treatment, and we'll likely find out which of these side effects will surface in Keira along with it's intensity this week. Obviously we're hoping for minimal side-effects, but regardless, our first treatment this week will be helpful in gauging how we manage each subsequent treatment based on how Keira reacts.

It will be a long week for sure, but we're glad that we're aggressively starting the treatment process for Keira's OMA.

Here's a pic of little K on our way home after a long day of doctor visits :)

Discharged! Next Steps, OMA Treatment and Clinical Trial

This past Thursday evening, we were discharged from Lucile Packard Children's Hospital in Stanford after having been admitted exactly 2 weeks prior.  Here's a shot of us leaving the hospital with Keira in her stylish hospital gown :)

We're thrilled to be at home and Keira is most definitely happy to be in her familiar space.

I know that many friends and family still have questions about OMA, Keira's condition, and the treatment path. While blog posts and emails help, it is hard to gain a full grasp over the subject matter even for us, who are living and breathing it every day, given that it is such a rare condition. So please continue to send in your emails to me or Crystal and we will do our best to continue to educate and update everyone.

To recap, about 3 weeks ago, Keira was a fully walking, running, climbing, grasping, chatting, exploring, rambunctious 17-month old. On Saturday September 24, we noticed a minor hand tremor and mild irritability after waking from a nap. 5 days later, this had quickly progressed to losing balance and coordination of her limbs, and 2 days after that, the loss of her ability to walk, along with long episodes of inconsolable irritability and body tremors. These were the peak of here OMA symptoms as of Monday October 4 (the day of Keira's surgery).

Since that day, Keira has started some initial steroid treatment for her OMA and everyone who has been at the hospital has observed some improvements in her symptoms. Keira's body and hand tremors seem to have subsided and are relatively minor now. Furthermore, she seems to be a bit more stable at sitting on her own. However, we're still not confident that she can sit without someone spotting her, she cannot walk, and her fine motor coordination has not returned to normal. Furthermore, here episodes of irritability seem to still come and go, and we're figuring out behavioral strategies to manage these.

Moving forward into more intensive OMA treatment, the hope is that we can get these physical and behavioral symptoms to subside significantly, although as I've mentioned, there is not enough data to make statistically relevant projections as to how Keira will respond.

As we've learned, there are a handful of drugs that are used in the treatment of OMA, and while there appear to be different "philosophies" depending on whether the OMA is being treated from an Oncologist as a result of Neuroblastoma (which Keira is) or whether the OMA is being treated by a Neurologist (which some hospitals do because this is technically an auto-immune neurological disorder), in either case, the drug treatments aim to suppress the immune system to allow for OMA symptoms to abate.

The first line of treatments that Oncologists tend to follow the use of some combination of steroids, immunoglobulin, and chemotherapeutics. If these don't work, there are other drugs such as ACTH that Neurologists tend to use.

For the OMA treatment itself, we're actually lucky that Keira qualifies for Stage 3 Clinical Trial that will use Prednazone (steroid), IVIG (intravenous immunoglobulin), and Cyclophosphamide (chemotherapeutic) over a period of ~18 months to treat the OMA. It should be noted that the Cyclophosphamide is being used to treat OMA and not cancer, even though it is a chemo drug. It was discovered some years ago that when treating more advanced Neuroblastomas with Cyclophosphamide, those patients that were also diagnosed with OMA saw some improvement in symptoms, and hence it is now part of the treatment protocol.

We are scheduled to go back to the hospital on Monday to get an understanding of the treatment schedule and trial roadmap. Her first round of treatments will likely happen next week though so we expect it to be another tough week as it will entail 3 hours of IVIG treatment on Tuesday, 3 hours of IVIG treatment on Wednesday, and 2 hours of Cyclophosphamide treatment on Thursday. These treatments typically have side-effects for a few days following treatment so we anticipate that Keira will be feeling pretty crummy most all of next week. However, we are thrilled that we are beginning treatment so soon after being diagnosed as in many OMA cases, this doesn't happen for months so we're very encouraged that this is happening so quickly.

We'll provide more details when we learn more on Monday.

Mmm, Popsicle

Of all the drugs Keira has had since being admitted, its good to see that a classic red popsicle can trump them all.

Last Scan (Hopefully) Today!

As I mentioned a few posts back, Keira's cancer staging has to go through a formal protocol to fully understand the nature of the cancer and see if it has spread. This included the following:

1. Neuroblastoma Pathology
2. Lymph Node Biopsy
3. Bone Marrow Biopsy
4. CT Scan
5. MRI
6. Bone Scan
7. MIBG Scan

We're done with all but the last MIBG scan.  Doctors indicated that #1-#6 all point to the Neuroblastoma being isolated and not spread, but they still have to do #7 regardless just to be sure.  

The MIBG scan is a 2-3 day process which we began on Tuesday with the injection of a radioactive dye (known as a cancer tracer).  This material will cluster around any cancer cells and can then be picked up on a scan 24 and/or 48 hours later.  Keira unfortunately has to be under anesthesia for the scan as they last 2 hours, which means that she cannot eat for 6 hours prior to the scan.  Couple this with the standard hospital delays and it can make for a miserable day for a little one.  

Yesterday, Keira had her first scan.  We were supposed to go in at 10:30am, but by the time they got her into the scan, it was 2:30pm :(   Needless to say, our little trooper was not in her best mood yesterday, but she got through it just like she has everything else.

We need to perform another scan today to give the dye enough time to disseminate in the body and compare it to yesterday's scan which can be thought of as a baseline.  Hopefully this will be the last scan and we can finally get past the cancer staging.  

Right now Ajji and Thatha (my parents), and Mom and Dad are trying to keep Keira distracted (and not thinking about food) until about 1pm which is when her scan is scheduled.   

Once this gets done, we could be headed home today!   

Our next steps looking forward will now be to focus on the OMA treatment schedule and this could begin as early as next week.  We're scheduled to be back at the hospital next Monday, but at this point, we're anticipating all out-patient treatments, which will be a relief.

If you're happy and you know it...

So little K's attitude and spirit seems to be slowly coming back.  I thought I'd share a picture that Grandpa Dale caught of little miss K being her silly little self.   

A Post from Uncle Rajesh

Dear Friends,

I thought I would write a post to add to the updates that Naveen and Crystal are providing. While Naveen has been doing a great job of informing everyone about what has been happening at the hospital, I thought it would be helpful for friends and family to truly understand just how much Keira has been affected by this, and to appreciate just how much she is improving.

In short, Keira has experienced two critical diseases - Neuroblastoma, a cancer of the nervous system, and OMA, an auto-immune disease. We are hopeful that the Neuroblastoma has been removed from Keira's body through last week's surgery to remove the mass. The OMA, however, is something that will likely stay with Keira going forward. It is not easy to write this, but the fact is that Keira's OMA will likely be a life-long challenge that will have to be managed through drug treatments and could potentially require special care and attention

Keira has now begun a steriod treatment and is showing some signs of improvement. Before the steroid treatment, Keira experienced uncontrollable shaking of her body, a lost ability to keep her balance, deteriorating control of her eyes, and severe mood swings. At times she was not herself. Even with the steriod treatment, Keira is prone to episodes of inconsolable crying, minor shaking, and a continued inability to walk. The likely side effects of the drugs are also tough. She will be susceptible to mood swings, sleeping difficulties, and a decreased ability to fight infection.

But she is getting better by the day and has retained her essence, her soul. She is still Keira.

It has been very, very painful for all of us to see Keira battle the cancer and now OMA. But she has been tougher and more inspiring than anyone could imagine. She is living proof that kids at her age can demonstrate a personality, and hers is clear: one of courage, persistence, and faith. It has been as tough to see Naveen and Crystal go through this. But their love and strength is something for which words won't do justice.

The next few weeks and months will not be easy. Naveen, Crystal, and Keira will need to somehow discard their perceptions of themselves, one another, and their life expectations and discover these anew. There is no doubt that they can, but they will require every ounce and hour of our love and support as they do this.

Supporting Keira

We continue to receive a lot of positive thoughts and encouragement, along with requests asking "how can we help". If you're not already aware, some of our friends have setup a Helping Hands website that you can sign up for here:
https://www.lotsahelpinghands.com/c/632001/verify/35571d08a0c6f84a67eae6aa7d0ac8e4/

I'll be posting some additional updates on Keira's final scan(s) and potential treatment schedule for her OMA shortly.

Thanks again for everyone's continued support!

Opsoclonus Myoclonus Ataxia (OMA)

It's been a while since we updated everyone and that is a good thing.  Keira's most acute issue, namely her Neuroblastoma, seems to have been addressed.  Her initial pathology came back "favorable" which means that this is a malignant tumor but one that tends to remain isolated and not spread.  Her lymph node and bone marrow biopsy also don't show any signs of spreading, and there doesn't appear to be any signs of spreading from her CT, MRI, and bone scans which were done this past Wednesday.  There is one more MIBG scan that has to happen next Tuesday which is part of the standard Neuroblastoma diagnosis protocol, and this scan will be a final validation (fingers crossed) that the cancer has not spread.  

If all this is indeed the case, it is very likely that resection of the tumor will be the course of treatment for Keira's cancer,  and not require any chemotherapy.

We continue to receive tremendous support from friends and family and this is all very helpful and encouraging.  We're receiving more and more questions now of Keira's OMA syndrome and I thought I'd post some of the information so everyone can understand this neurological disorder.

It's enough for little Keira (and any child for that matter) to have endured everything she has, dealing with the loss of her fine and gross motor skills, then having been diagnosed with Neuroblastoma, and then having surgery to remove the mass.  But for Keira, we're still in the early stages of now dealing with the OMA, which is not a very well understood neurological disorder, partly because it only occurs in 1/10,000,000 children a year.  In the US, there will typically be ~10 cases of OMA that develop in a year.

OMA stands for Opsoclonus Myoclonus Ataxia Syndrome (also referred to as OMS or OMAS).  (1) Opsoclonus refers to uncontrollable, rapid, jerky eye-movements.  (2) Myoclonus refers to jerky, tremor-like movement.  (3) Ataxia refers to the loss of coordination and balance (the inability to walk).  (4) In addition to these conditions, there is also extremely varying behavioral conditions that affect sleep and mood.  Keira has 2, 3, and 4, and hopefully will not develop 1.  

OMA is thought to be triggered solely by Neuroblastomas.  What happens is that the body's immune system starts producing antibodies to combat the cancer.  Since Neuroblastomas are associated with nerve tissue, it is thought that there is some marker that is shared between normal brain/nerve tissue and the Neuroblastoma, and it is this shared marker which causes these antibodies to start attacking nervous system function (thought to be specifically in the Cerebellum, which is what controls movement and mood, and hence why OMA presents with loss of control of these functions).  

The irony here is that the very antibodies that have likely minimized the growth and spread of the Neuroblastoma, are the very culprits that causing the OMA.  In fact, if Keria didn't present with OMA symptoms, it likely would have been months before the Neuroblastoma was found.  

Now that the Neuroblastoma has been removed, it is not as if Keira's OMA symptoms will naturally get better.  This has probably been the most confusing and frustrating point for many of us to comprehend.  Keira's immune system has already been triggered to produce these antibodies, and similar to how a vaccine forces the production of antibodies which stay with you for a prolonged period of time, these antibodies and their continued production, will remain in Keira's body, and hence will continue to attack her nervous system.  

What we're now focusing on, are therapies to try and manage and control the OMA, which ultimately means that we have to manage and control these antibodies by some form of immune system suppression.  This is now actually more of a neurological auto-immune disorder than a cancer and we're shifting our focus to treat it as such.

Because there are so few cases of OMA, there is not a lot of data as to what drug therapies work and in what ways.  The goal is to find a combination of drug therapies, which will likely be a long term process, that work to combat specific symptoms of OMA by interfering with the antibodies or the systems that produce the antibodies in some way.   Keira could respond to these therapies very well, respond but do so in a remission/relapsing cycle, or only minimally respond to to these therapies.   Her motor development and cognitive abilities could be impaired, and it will likely be a while before we understand exactly how that would impact her developmental path and lifestyle.

Such an unknown prognosis is naturally very scary.  But we continue to remain hopeful and optimistic, and will be supporting and encouraging Keira as she starts these drug therapies.  The road ahead will be filled with many ups and downs, and regardless of what path she takes, we will be here to give her love and support and continue to believe in her spunk and stubbornness to keep fighting and not underestimate her will to walk and run again :)

First Morning Post-Op

Keira had a pretty good night last night, sleeping most of the way through after a very long day. She has 4 incisions in her abdomen from the laparoscopy as well as two pokes in her lower back where they drew bone marrow which are causing her some pain, but she seems to be responding well to her pain medication. We're hoping that we get a favorable pathology report back today or tomorrow. In the mean time team Keira is splitting time doting over little miss K and getting our questions together so we can begin to understand what her treatment plan might be over the coming days/weeks.

We also got a special visit from Oriana, one of Crystal's old students from a couple years back, and she had written and illustrated an entire story about Keira (who is a fish in the story):

Thanks for the continued support from every corner of the globe :)

 We're truly grateful to have such great friends and family!

2:04pm October 4 - Tumor OUT :)

"She's as cute on the inside as she is on the outside" - That's what Dr. Hartman, Keira's Attending Surgeon, just told us after he came to inform us of a successful operation to remove the tumor. The visual inspection indicates that the mass appears to be isolated, and visual inspection of lymph nodes also appear to be normal. Also the surgery was done laparoscopically which means it was minimally invasive which should speed up her recovery as well.

Although this is only the first step, this is GREAT NEWS.

We will be now focusing on helping Keira recover over the next couple of days and see how her OMA symptoms react to this mass no longer being in her body. Furthermore, we expect to get the full pathology report for the mass, lymph nodes, and bone marrow over coming days which will "officially" let us know whether the cancer has remained isolated or if it has spread.

We're hoping to see Keira in post-op within the hour.

10:30am October 4 - Off I go to get better!

Little Keira went into surgery like a brave little trooper this morning at around 10:30am Pacific Time. The operation is scheduled to last around 3-4 hours. Please keep sending your positive vibes and all the love. The outpouring of support for our family and Keira is a force in and of itself. We're truly grateful to have such an awesome community of friends and family.

Strength, Love, Faith, Hope

In September of 2007 we dedicated our summit of Mt. Whitney to my Uncle Billy who was battling cancer. Since then he is in remission and living life to its fullest.



Today we received our own Whitney Spirit from those same friends (+2) who we climbed Whitney with, and it reminded us that indeed, Strength, Love, Faith and Hope will get our family through these difficult times. We love you, Gautham, Lara, Bodhi and Nina!

Happy Thoughts for Keira

On Friday October 1, doctors found a mass around Keira's adrenal gland and believe this to be Neuroblastoma, cancer of the nervous system, a very rare form of cancer that only affects only 500 children a year in North America. This cancer can take one a relatively mild form, which remains isolated to one specific region or mass, or a more aggressive form which can quickly metastasize to other areas of the body. This cancer also has had a secondary effect (known as OMA) in Keira's body, which is to create antibodies to attack the cancer, but because the cancer is associated with the nervous system, these antibodies start interfering with nerve/brain function as well (and it is this secondary effect which is actually causing Keira's motor coordination issues).

The good news is that doctors believe they've detected the Neuroblastoma relatively early in Keira. The tumor is relatively small and it appears to have remained isolated to just the adrenal gland, which is hopeful that it is more of the mild form.

The treatment plan will entail a number of steps that will take place over the coming week, but it will be some time before we have all the information that will ultimately define the course of treatment.

The first step is to remove the tumor which we're hoping will happen on tomorrow (Monday) morning.  Also during the surgery, they will collect samples of bone marrow and lymph nodes to see if the cancer has spread beyond the adrenal gland.

Then the tumor, bone marrow, and lymph node samples will be analyzed to determine whether we are dealing with a mild form of Neuroblastoma or a more aggressive type, and whether the cancer has spread to other ares of the body.

In parallel we will begin to understand whether Keira's neurological symptoms (OMA) react to the tumor no longer being in the body.  This part is much less understood as there are roughly about 10 OMA cases a year in North America.  The hope is that after the tumor is removed, the auto-immune antibodies abate naturally and/or with added drug treatment.

In about a week's time, once we see the analysis of the tumor and cell samples, as well as how Keira's OMA is reacting, we will have a better understanding of what the longer term treatment course will look like (whether that involves chemotherapy, what dosage, and/or additional treatment if the cancer has spread).

Right now we're focusing on keeping Keira happy and and smiling as she gets prepared for surgery.

Keira is surrounded by lots of friends and family right now and all the love, support and encouragement coming in from all over is inspirational to us. Whether it's dropping by, sending an email, voicemail, or even a text message, we see and feel the support around every corner and it makes it impossible for us to even think about the negative.

Thank you all for your continued support as we begin this fight.

All the love,
Crystal & Naveen