Healing Ananda

Post-Op Check-Up...

2008-02-01T23:21:00.000-08:00

Today we had a follow up appointment with Dr. Pattisapu. He removed the band-aids on Ananda's head, the holes from the headframe are healing nicely. And we discussed the findings on her MRI last month - concerning the enlargement of her ventricle horn. We are scheduling a flash MRI in 6 weeks to see what exactly is going on...

Ananda is better than ever.

Yesterday and Today...

2008-01-17T22:52:00.000-08:00

Ananda is home. She is doing GREAT.

Here are the details of yesterday's events:

We met at the Gamma Knife Center at 5:30am. The nurse took her height, weight, vitals. We met with the anesthesiologist and Dr. Pattisipu, and she was anesthetized and put on a respirator. The headframe was mounted on her head, and she was given a MRI...

Afterwards, she was taken to get a angiogram by Dr. Hellinger. Her artery in her thigh was catheterized in preparation - but the headframe placement prevented them from being able to do the angiogram. Whether a mistake was made when they put it on her head or not, I don't know - only that instead of having both the MRI and angiogram data to target the gamma knife, they only had the information from the MRI...

Then they took her to the GKC in another building. They targeted the AVM with the MRI data and showed us the area that would receive the radiation - saying that they would begin the treatment shortly... Over an hour later, I keep noticing a guy in street clothes going in/out of the room. It turns out he was a tech - the GK machine broke. The table wouldn't go through it's test run. Apparently, they took over an hour to take it apart and put it back together - while my daughter was still under anesthesia. Finally, they told us what was happening, that it was repaired, and that they were proceeding - the radiation taking about 70 minutes...

So they moved her to outpatient recovery, where we waited for 2-3 hours to see her - finally we became tired of waiting and found our way to her bed. She was waking up, groggy and nauseous from the medication, but she knew where she was and what had happened. She was surprised when I told her that the doctor had to take out her loose tooth...

In a few hours, she was on her feet and released by 7pm. We took her to the hotel room across the street, so she wouldn't have to travel. She slept for a few hours, then woke up HUNGRY - eating everything we offered her...

--- more ---

[01/22/08: One week later - still trying to edit this post. I'll add the rest tomorrow...]

Tomorrow...

2008-01-15T11:13:00.000-08:00

Six weeks later...

Ananda receives her GK treatment tomorrow morning. We're heading to the hotel in Orlando as soon as she comes home from school later this afternoon. Her appointment is at 5:30am tomorrow morning. She'll be anesthetized while the head-frame is put into place, followed by an angiogram and a MRI in order to target the AVM, and then the gamma knife radiosurgery. The entire process should take 4-5 hours. I'm uncertain if she'll be released in the evening or the next morning - I know she'll have to be in recovery for at least 7 hours while the artery in her leg heals.

It has been a loooong 8 months waiting for this day...

How's Ananda? She is AWESOME! She had a fun-filled winter break, and has been back to school for the past week. She's actively selling Girl Scout cookies for her Brownies troop - so look out! And she's very anxious to get her "AVM fixed," so she can get back to karate classes...

Again, many, many thanks to everyone for keeping Ananda in your prayers. In addition to the generous donations we've received, there was a fundraiser event in Philadelphia, with upcoming events in NYC and Montreal, and a double-CD benefit compilation dedicated to Ananda with all the proceeds going towards her medical fund. WOW. Thank you.

Lastly, I apologize for not posting any updates over the past weeks. The holidays allowed me to not think about all the mishaps that we've faced in dealing with everything. And every time I attempted to write something, it came out angry and bitter, so I didn't post anything. Sorry.

CANCELED!!!

2007-12-04T11:55:00.001-08:00

I just received a phone call 15 minutes ago from the GKC - the machine is still broken.

My wife will be home from work in 10 minutes. My daughter will be at the bus stop in an hour. And my mother-in-law is waiting to be picked up at the airport.

Optimistic and unaware.

And I have to tell each of them that the treatment will not be happening tomorrow.

I am in shock.

Emotionless.

In the Clutch...

2007-12-03T09:04:00.000-08:00

This just in: The clutch has arrived, and the techs are scheduled to service the GK device later this afternoon. It looks like she is on schedule for Wednesday morning...

Countdown?

2007-11-30T23:29:00.000-08:00

We woke at 4:30am for an early morning drive to Orlando, arriving just in time for our 8:30am appointment with Dr. Michael D. Sombeck at the Florida Hospital Gamma Knife Center. He discussed the Gamma Knife procedure with us and answered our questions and concerns. Afterwards, we had a tour of the control room and treatment room...

And then came the not-so-good-news. The nurse informed us that the Gamma Knife machine was currently offline - and that treatments scheduled throughout the week had been canceled until Wednesday. He is waiting for a replacement part, a "clutch" for the moving couch, that is shipping from Sweden. He was expecting a call later in the afternoon to say whether it made in on the flight today...

So we haven't heard any news from the nurse tonight - which we're taking as "no news, is good news." And now we're praying that the replacement part is on the airplane, that it will clear Customs on Monday, so the techs can service/test the machine on Tuesday, just in time for her treatment scheduled for Wednesday...

Five days and counting?

Confirmed...

2007-11-13T09:54:00.001-08:00

OK! Ananda's surgery is confirmed for December 5th - just 3 weeks away... She also has a preop exam with the Radiation Oncologist scheduled for November 30th in Orlando. We'll get a overview of the treatment and a tour of the facility on that day...

Grandma was visiting for the past 5 days, so Ananda has been getting lots of TLC...

Tentative Date...

2007-11-07T09:08:00.001-08:00

We just received the "tentative" date for Ananda's Gamma Knife surgery - she's scheduled for Wednesday, December 5th. "Tentative" in that all three doctors (neurologist, radiologist, and anesthesiologist) have to sign off on the surgery - should be confirmed on Monday. It's nearly a month away, and really I wish it was sooner, but I'm not going to complain. We're hoping that the wait until the radiosurgery is uneventful - as well as the next 1-3 years for her recovery.

Keeping Ananda calm and collected is our constant concern - she naturally wants to run/jump/play like a 6-year-old kid, but we always have to remind her to settle down, so her blood pressure doesn't raise too suddenly. She doesn't participate in PE or recess either. The school nurse called this morning, Ananda had a nose bleed - I called the doctor who assured me it was related to the change in weather/humidity, not the AVM/aneurysm. Thankfully, Dr. Pattisapu's office has been very good at keeping in touch with us and returning our calls.

Gamma Knife...

2007-11-06T14:37:00.000-08:00

Here is some information about the Gamma Knife - there is a wealth of additional information about it on the internet. It is very similar to the LINAC system that Shands Hospital was going to utilize on Ananda, in that it uses a focused beam of gamma radiation directed precisely to the location of the AVM and aneurysm, with guaranteed accuracy of 0.5mm to an achievable accuracy of 0.15mm...

Florida Hospital Gamma Knife Center

The Gamma Knife® isn't really a knife at all, but radiosurgery - a non-invasive neurosurgical procedure that uses powerful doses of radiation to target and treat diseased brain tissue while leaving surrounding tissue intact. This state-of-the art technology allows physicians to operate on brain lesions often considered inoperable. Gamma Knife treatment offers new hope for patients with brain tumors, vascular malformations and functional disorders.

There is an excellent video on the system here (requires RealPlayer). And I have added additional links to Gamma Knife websites on the links section on the sidebar.

IRSA has a good overview of what is involved with radiosurgery - with some encouraging words:

The usual time to resolution and occlusion in adults is two to three years for AVMs approximately 3cm in size. For reasons as yet unclear, children have a shorter time to obliteration of the AVM after radiosurgery treatment than adults. It is not unusual to see a child's AVM disappear in less than one year and even six months past radiosurgery.

Come on doctors, give us a date...

Decision...

2007-11-05T23:00:00.000-08:00

Once again, I apologize for not updating the blog sooner. I continue to be behind with replying to emails and sending out thank you cards - never quite catching up...

On Friday afternoon, Dr. Pattisapu called to give us the decision of the conference. Ananda's AVM/aneurysm was considered inoperable - invasive surgery would be too risky. Therefore, Gamma Knife surgery is the planned course of action. Both Dr. Pattisapu and Dr. Hellinger will be performing the surgery, so the scheduling is dependent on the coordination of their schedules.

So now, we are waiting (once again) for the dates of her treatment. Will this take a few days? A week? A month? Longer? When I picked up Ananda at the bus stop today - she came running off the bus, asking me: "Did you get it?" ??? "Did you get the dates of my treatment?" My heart sank, as I told her there was no news yet. Tonight, at Girl Scouts, Ananda overheard me mention "aneurysm" to her troop leader - which we decided not to tell her about - and she immediately got upset. Ugh. And over the weekend, she told Melanie, "I wish I was a normal girl and didn't have an AVM..." Ugh, again.

Throughout her entire ordeal, Ananda has had a steadfast optimism that I found strength in. So when I see her optimism starting to drop in instances like this, it really worries me - keeping her in good spirits is my biggest priority. "Soon," I tell her, "soon."

Angiogram Results...

2007-10-29T23:50:00.000-07:00

In short, Ananda's angiogram earlier today revealed a venous aneurysm in addition to her AVM, which complicates matters. Not the good news we had hoped for, but at least now we know more about what is effecting her.

We drove to Orlando on Sunday, rented a hotel room next to the hospital, and even went swimming early in the evening. In the morning, at 5:30am, Melanie and Ananda went to the hospital for the preop and procedure, the angiogram itself taking about an hour, followed by 7 hours of observation. Ananda was in great spirits all day long, playing Webkinz on the laptop, and eating everything in sight after the anesthesia wore off.

Dr. Hellinger will present her case to a panel of doctors at a Gamma Knife conference (hopefully) this Friday, where it will be reviewed. With the presence of an aneurysm, radiosurgery may no longer be an option, since it takes 2-3 years to completely eradicate it. Melanie and I have become more accepting to the fact that invasive surgery may be her only recourse, and now the doctors will decide if it is, in fact, operable...

Our deepest gratitude to Dr. Hellinger and the hospital staff at Florida Hospital, who were exceptional today - compassion and caring, professionalism and expertise.

We're at home. Everyone is totally exhausted after a long day at the hospital. Ananda is sleeping soundly and has to keep her leg straightened while the femoral artery heals - the location where they routed the angiogram. No school for her tomorrow, but maybe some pumpkin painting/carving, and hopefully trick-or-treating the next day. Last week, she was awarded the Citizen of the Month award at a ceremony at her school. Of course, she continues to be a bookworm, having finished another Magic Tree House book this weekend...

Please, at our request, continue to keep all your thoughts, feelings, and prayers for our daughter positive. Do not waste any valuable time/energy on negative thoughts or worst-case-scenario outcomes. Ananda will be completely and miraculously healed! Believe it.

Thank you.

Orlando...

2007-10-18T23:32:00.000-07:00

First, I'd like to thank everyone for their prayers and positive energy. Although this blog has been online for a few months, earlier this week was the first I really made it public. There are still a few backdated posts that I need to edit and publish, they will give you a better overview of the challenges we've been facing in getting Ananda treated. I hope to get them online within the next few days. Also, I've been receiving a lot of emails, and we owe many personal thank you letters, which I haven't had time to write - my apologies...

Today, we went to Orlando to meet with Dr. Jogi Pattisapu, M.D. from Childhood Neurosurgery and Center for Hydrocephalus, PA. This is the practice that our insurance company directed us to, and I must admit, after the way we were treated earlier this week, we were a bit reserved about who they were having us meet, but their website provided some reassurance:

We pride ourselves on our open door policy of accepting all children and families without regard to financial status. Our goal is to ensure a pleasant experience for parents and children during treatment, and to optimize the intellectual development of each child.

I'm happy to say, Dr. Jogi and his staff were excellent! He was wonderful with our kids, did a thorough interview and examination with Ananda, and he took the time to listen to our entire story and answer all of our questions. His review of her 5-month-old MRA and CAT scans showed that the AVM is closer to her thalamus than we were previously led to believe. And he cautioned that radiosurgery in that vicinty may be risky. We were in agreement that an updated view of her AVM is in order, and an angiogram would be best. He immediately arranged to have us meet with an Interventional Neuroradiologist later in the afternoon. Finally, a proactive team of doctors - Melanie and I cried tears of joy afterwards...

After a quick lunch, we raced to Florida Hospital to meet with Dr. Frank R. Hellinger, M.D., who will be performing a Cerebral Angiogram on Ananda on October 29th. He was very honest about the potential risks involved. Everyone is a bit nervous, but we think it is in her best interest...

Meanwhile, Ananda is doing well - home from school with a 4-day weekend. She is now reading "chapter books" - Magic Tree House, Junie B., etc. - and is armed with her new library card. She's been enjoying snorkeling in the Gulf and has been busy selling nut products and magazines for her Brownies troop...

Another Heartbreak...

2007-10-15T23:27:00.000-07:00

Today:

We woke early this morning, bathed/dressed/fed the kids, packed the van, and drove three hours to Shands Hospital.

While on the road, just 20 minutes from the hospital, we received a message on our cellphone - it was our insurance company telling us they canceled Ananda's surgery.

Reason being, that Shands Hospital is not in the Amerigroup network.

Both the insurance company and hospital have had her billing/insurance information for over a month, we have submitted everything they requested correctly and in due time, assured repeatedly that everything was in order - and now they have the audacity TO CALL US ON THE DAY OF THE PREOP TO CANCEL HER SURGERY.

?!?!?!?!

We spent the next several hours at the hospital trying get some answers.

Some support.

Some compassion.

But finally had to leave in despair and disgust.

Melanie and I are trying to make sense of everything - even now we're still in shock...

But we're home now.

And the kids are sleeping peacefully.

And our brilliant and beautiful daughter is with us.

And we will not give up Hope.

Prayers, Please...

2007-10-15T06:55:00.000-07:00

Finally, we're off to the hospital in Gainesville.

Today we will meet with the anesthesiologist and Dr. Friedman, and on Tuesday morning, Ananda will have her surgery...

Once again, our family is requesting your prayers - being positive and thankful for Ananda's full recovery.

Thank you.

The Doctors...

2007-10-10T20:27:00.000-07:00

Our daughter will be treated at Shands Hospital at the University of Florida in Gainesville next week.

Heading the surgery will be Dr. William Alan Friedman, M.D., who, among his numerous credentials and published works, has been one of the pioneering doctors on the radiosurgery treatment Ananda will be receiving.

Additionally, Dr. Frank Joseph Bova Ph.D. will be assisting with the procedure.

The Neurology department at Shands is considered one of the top three facilities in the world for LINAC Scalpel surgery.

Yet another blessing, that the hospital is less than 3-hours away...

We are confident that Ananda is going to receive the best possible care available.

The Procedure...

2007-10-08T18:51:00.000-07:00

[click picture for animation]

We are one week away from Ananda's radiosurgery - or "treatment," as she prefers to call it.

She is in great spirits and excited to get it done.

We have elected to have the LINAC Scalpel Radiosurgical procedure.

This is a stereotactic system that will direct a precise pinpoint of gamma radiation directly to the location of the AVM - safely and effectively eradicating it within 1 to 3 years.

She will be anaesthetized during the length of the procedure - the major discomfort being the stereotactic head ring that will be attached to her head in order to target the location.

This is an outpatient procedure, and Ananda will be released on the same day.

We are grateful that we live in a time where modern medicine is capable of healing through such advances in technology.

LINAC Stereotactic Radiosurgery for AVM's

One Less Bill...

2007-09-21T20:25:00.000-07:00

Another medical bill has been written off! Associated Pathologists of St. Joseph's Hospital has canceled a bill for over $300. Thank you!

New Dates...

2007-09-18T07:08:00.000-07:00

Finally, some good news from the Neurology department at Shands Hospital. Ananda's radiosurgery has been rescheduled to October 15th and 16th. Twenty-seven days and counting...

Relief...

2007-09-05T08:08:00.000-07:00

We received some great news today regarding the medical bills. St. Joseph's Children's Hospital of Tampa has written off two bills - $10,475.24 and $20,330.72!!! What a blessing - thank you!

Another Cancellation...

2007-08-11T02:14:00.000-07:00

Shands has canceled the appointment on August 20th too - now she's scheduled for September 24th.

This is insane.

[Excerpt from an IM]

Aug 11, 2007 2:14 AM

1:21 AM E----:how's ananda?

1:22 AM me: Went to Gainesville on Monday to get Ananda treated on Tuesday. It was an full day of meeting doctors and NP's in preparation. Then around 4pm, we get called into an exam room, and a financial dept. person comes in...

Tells us, they're NOT going to treat her unless we have half of the fees up front.

E----: what?????

1:23 AM me: Mel has a breakdown, and Ananda yells down the hall: "I WANT MY HAD FIXED NOW!!!"

1:24 AM Yeah, tens of thousands - so fucking unrealistic. Not even willing to give us a payment plan - and our credit is great.

1:25 AM Well, almost - some of the earlier bills have already gone to the creditors/collections, we were trying to get them reduced...

1:26 AM So, first they told us we could come back on August 20th, if we could pay. Then yesterday, they called to cancel it completely.

E----: holy shit!

1:27 AM me: Today, we begged them for a date in September - so they gave us the 24th. 6 more weeks of waiting - 6 more weeks of "IS MY DAUGHTER'S BRAIN GOING TO BLEED AGAIN?!?!?!" Uncertainty and anxiety.

1:30 AM E----: that is the craziest, most heartless bullshit... I can't believe they could be so cruel... and they're in the healing business??!!

Donations...

2007-08-09T11:48:00.000-07:00

Donations are graciously being accepted to the following bank account:

Ananda Milletics Donations
#4211198018
c/o Washington Mutual
Riverwalk Financial Center
11422 Ridge Road
New Port Richey, FL 34654 USA
(727) 848-2723 phone
(727) 845-4171 fax

Or you can donate with a credit card via PayPal:

Thank you.

Cancellation and Cancellation...

2007-08-06T23:20:00.000-07:00

Shands Neurology had a cancellation for surgery today, so they offered the opening to Ananda - we accepted without hesitation.

All day long we waited and waited, eventually meeting the doctors and nurse practitioner in preparation for tomorrow's surgery.

Just before we were to meet Dr. Friedman, a woman from the financial department came into the room and told us that unless we had $30,000 immediately, half of the cost of the procedure, they wouldn't operate on her.

No money. No operation.

They told us to come back on August 20th, if we have our finances in order...

But right now, we're in shock.

AVM...

2007-08-05T09:00:00.000-07:00

Introduction

Cerebral arteriovenous malformation (AVM) is a cerebrovasuclar disorder of blood vessels characterized by tangles arteries and veins located in various parts of the brain.

The cause of AVMs remains unknown. Most patients present with either seizures or bleeding due to the fragility of the abnormally structured brain vessels. Some patients may remain asymptomatic or have minor complaints. Interestingly small AVMs are more likely to bleed than larger ones. Additionally, once an AVM bleeds, the probability of re-bleeding increases substantially.

In addition, the AVM may redirect blood flow away from normal brain structures causing a "steal-like" phenoenon that will present with stroke like symptoms.

Symptoms

The most frequently observed symptoms related to AVMs are headaches and seizures. The large tangled mass of blood vessels may irritate the surface of the brain or actually bleed into the brain causing symptoms. Patients will often complain of loss of consciousness, sudden and severe headaches, nausea and vomiting, blurred vision and stiff necks. They may also have focal neurological problems, such as paralysis, numbness, or speech difficulties.

Diagnosis

The diagnosis of an AVM is made using neuroimaging modalities. A CT scan usually is the first study ordered and often shows a tangled mass of blood vessels. This study is often followed up by a CT-angiogram, which is a specialized CT scan looking specifically at blood vessels. A formal angiogram is often ordered as well to look at the cerebral blood vessels. MRI studies can be useful as well.

Figure is an angiogram showing a mass of tangled vessels.

Lumbar punctures are often performed initially to look for evidence of bleeding into the fluid that surrounds the brain. This fluid will often look red and be called "xanthochromic."

AVMs are graded according to a system known as the Spetzler-Martin Grading Classification. This system grades the AVM based on its size, venous drainage, and proximity to important brain areas. The treatment strategy of the AVM is related to the overall grade.

Treatment

The treatment initially involves surgery for any large hemorrhages that may endanger the patients life. Blood pressure has to be aggressively controlled to further prevent any risk of additional bleeding. Anti-seizure medications need to be used to control any irritation to brain caused by the AVM.

Long term treatment of the AVM is geared to preventing any future rebleeding or enlargement of the AVM. Specific treatments depend on its location, size, proximity to critical brain areas and venous drainage patterns. Surgical intervention involves a craniotomy and physical removal of the AVM. Embolization (occlusion of blood vessels) involves passing a catheter through the groin into the cerebral arteries. Special glue is then injected in the AVM to obliterate its blood flow. Stereotactic radiosurgery also is used to destroy AVMs and involves high dose radiation directed to the central part (nidus) of the AVM.

Drawing depiciting endovascular catheterization.

Prognosis

Most patient with AVMs do well since the initial bleed is not neurologically devastating. Once recognized the majority of AVMs are treated successfully and with little morbidity.

Over 100 AVMs are treated each year at the University of Florida by Dr. William Friedman and Dr. Stephen Lewis.

link

Welcome... [start here]

2007-08-01T09:41:00.000-07:00

Hello,

Our daughter, Ananda, was afflicted by a cerebral AVM in May 2007.

This blog will be our way to communicate with those of you that are interested in her progress.

I intended to publish this blog much sooner, but caring for Ananda, researching her condition, keeping her doctors on task, and managing her medical bills have become a full-time job for us in addition to our everyday duties...

I'm going to back-date several of the updates that I sent to our friends and family during the early weeks of her crisis, plus a few edited posts/pictures from our family blog.

Please, do not focus on the earlier posts - Ananda is currently doing GREAT.

She is happy and healthy - enjoying her summer vacation to the fullest.

Thank you.

Sincerely,
Allen & Melanie Milletics

LET YOUR VOICE BE HEARD

2007-07-15T23:32:00.000-07:00

[Excerpt from UWG Aneurysm & AVM Support]

DID YOU KNOW...

Based upon an estimated 5% incidence of brain aneurysms in the general population, 12,500,000 Americans have a brain aneurysm. Rupture brain aneurysm causes more than 15,000 deaths annually!

Based upon an estimated 0.01% incidence of brain AVMs in the general population, 250,000 Americans have an AVM. Approximately 2% of all strokes are cause by ruptured AVMs!

Based upon an estimated 3.2% incidence of aortic aneurysms in the general population, 8 million Americans have an aortic aneursym with more than 15,000 - 20,000 deaths annually

Aneurysm research could significantly reduce these devastating statistics.

Gifted, productive researchers are being forced to stop aneurysm research because of the lack of funds.

Federal funding for aneurysm research is virtually non-existent.

Aneurysm related deaths equal, or exceed the annual frequency of AIDS associated deaths, but receive infinitely less research funding.

A search of CRISP (Computer Retrieval of Information on Scientific Projects) for any year, reveals gross disparities between federal funding for aneurysms/AVM research and other less life threatening conditions.

WHAT CAN I DO?

Let your voice be heard. Write Congressional Representitives asking them to support additional funding for aneurysm research. The following suggested letter may be copied and emailed to your Congressional Representatives.

Dear Sir/Madam,

Aneurysms and AVMs are insidiously silent killers of more than 45,000 Americans annually. Surviver of these insidious killers are often disabled and incapable of gainful enployment. Estimations of the frequency of aneurysms/AVM in the American population may be as high as 21,000,000. Nonetheless, NIH funding of aneurysm and AVM research appears to be of the lowest priority. I respectfully encourage you to consider supporting additional funding for aneurysm and AVM research projects.

Very Sincerely,

Please take the time to click below and make your voice heard.

Email Your Senator

Email Your Congressman

link

See SiCKO...

2007-07-01T23:06:00.000-07:00

Today I watched Michael Moore's new movie SiCKO, which addresses the national health care crisis in the USA.

I had no intention of getting political on this blog, but the timing of this documentary really hits home.

We didn't have insurance at the time of Ananda's medical emergency, and we are going through our own "health care horror story" at the moment - insurmountable medical bills, multiple rejections from health care providers, numerous delays, and instances of complete disregard from the doctor's office...

Something has to change.

Meeting Dr. Hoh...

2007-06-21T20:20:00.000-07:00

Today we went to Shands Hospital at the University of Florida in Gainesville to meet with Dr. Brian Hoh, M.D.

He was very compassionate and understanding to our questions and concerns.

He believes that Ananda is a good candidate for LINAC Scalpel surgery - a noninvasive, radiosurgery involving a precision exposure to gamma radiation.

Her case has now been passed to Dr. William A. Friedman within the same department - so now we're waiting for an appointment from his office within the next week...

Review:

"This is 7-year-old girl that had an intracerebral hemorrhage in May of 2007 from a 2-cm right mesial occipital AVM. She initially had the worst headache of her life, followed by lethargy, nausea and vomiting. She has since made an excellent recovery and is neurologically intact, and has had no further problems. She was seen by the neurovascular group at USF, and comes to me today for a second opinion."

RE: Ananda Update...

2007-06-14T23:14:00.000-07:00

[Excerpt from an email.]

So...

Two weeks ago, Ananda had a midnight ambulance ride to St. Joseph's in Tampa - massive headache attack, but, thankfully, no hemorrhaging.

They kept her in ICU for 4-5 days, and she's been home since - taking codeine in the evenings.

And last week, we were supposed to meet with her original neurologist and radiologist, to see her MRI/MRA's for the first time and discuss the treatment plan - only to find out, in the waiting room, that the doctors passed her to another doctor at Tampa General without telling us.

And when we contacted the new doctor's office for a appointment, they told us he wasn't taking any new patients.

So we went through a bit of despair and depression, trying to find a reputable doctor to treat her, but at some point they reconsidered, hearing our plea.

But after researching his credentials, we decided today to pass on him and go to Shands Hospital in Gainesville (2 hours north) - which is where I initially wanted her to be treated, but the waiting list to see a doctor seemed so far away at the time.

So on Thursday, June 21st, we will have our initial consultation with Dr. Hoh at Shands - the leading Neurology research department in the state, treating over 100 cases of AVM each year.

Tonight, she had another headache and vomiting - but she's sleeping now.

And we pray, pray, pray...

Otherwise, she's been fine most of the time - reading, drawing, playing (and fighting) with her brother - with Melanie and I constantly trying to keep her from being too active...

Sincerely,

Allen Milletics

Ananda Update...

2007-05-25T20:11:00.000-07:00

[Originally sent via email to our family and friends.]

Hello,

I apologize for the lack of communication over the past week - it has been a physically and emotionally exhausting time for us.

I really find it hard to think back on the past week, let alone write about it...

Ananda is well and is recovering at home - she was discharged on Tuesday afternoon, and has been in our care since.

Her appetite is back, and she is walking around - becoming more active.

She still has head/neck pains, which we treat with ice packs - they seem to bother her more in the evenings, with her waking/crying every 30 minutes.

She also has restless sleep, occasional bad dreams, wakes up confused - but each night gets better for her.

Our biggest challenge has been keeping her calm and peaceful - she tends to get really upset at the littlest things.

Other than that, things appear "normal" at home - like last week was just a bad dream...

Her doctors consider her very lucky to have survived without any noticeable neurological damage - we consider it a miracle.

Next week, we will be meeting with the neurologists regarding treatment options for the AVM - her records are being shared with doctors across the country, and we intend to give her the best care possible.

Each treatment has its risks - and we will be facing some major decisions in the coming weeks.

We continue to pray for a spontaneous regression - asking for one more miracle.

Just know that right now, she is recovering and healthy - she's still a bit week and a little skinny, but she's getting stronger each day.

Her biggest concerns are making up the school work she missed last week, and when she can go back to Karate...

To those of you with children, don't take the precious time you have with them for granted - cherish and nurture them fully.

Thank you for your prayers, hope, and kindness over the past week.

We ask that you continue to keep Ananda in your prayers and be positive and thankful: "I am thankful for Ananda's full recovery..."

Thank you.

Love,

Allen & Melanie

Homeward Bound...

2007-05-23T22:05:00.000-07:00

[Originally posted on our family blog - excerpt.]

On Tuesday, A continued to show signs of improvement - actively participating in crafts and activities in the children's ward. The doctor gave the OK to take her home in the late afternoon, and we left the hospital by 5pm - finally taking A and M home, after a week of being in the hospital. Rough first night - little sleep. Her head/neck still hurt her - keeping ice bags on them, giving her codeine at night, and trying to keep her calm... Today, she rested on the couch most of the day - she ate well, and we tried to get her to have a BM. Things feel like they're coming back to normal around here. A is still very needy and gets really upset easily about little things. In two weeks, we'll meet with the neurologist and decide what treatment method will be best for her - until then, it's a relief to have her home...

Progress...

2007-05-21T23:08:00.000-07:00

[Originally posted on our family blog - excerpt.]

I can't begin to tell you what our family, especially our daughter, has been through the past few days... A had a brain hemorrhage due to a Arterio Venous Malformation (AVM). She is receiving the best care possible at St. Joseph's Children's Hospital in Tampa. She is still in pain with massive headaches, which are being treated with morphine, codeine, and ice packs. She's making progress. M has been spending every day/night at the hospital. Our family is strong, and we will get through this...

Prayer Request...

2007-05-17T20:12:00.000-07:00

[Originally sent via email to our family and friends.]

Hello,

Our daughter, Ananda, needs your prayers.

She is in stable condition after having a brain hemorrhage - diagnosed as having an AVM.

No apparent effect to her motor or speech skills - but she will be in ICU under observation for the next week.

We should have more test results from the neurologist tomorrow.

I was able to give her a popsicle this afternoon and caught a sparkle in her eyes. :)

It's been a long night/day/night/day - and I have to rest.

All our love to you and your family.

Love,

Allen & Melanie

P.S. - I can't take your calls, and please spare my In Box - just send her your prayers, that's all that she needs. Thank you.

Call to Prayer...

2007-05-17T20:00:00.000-07:00

[Originally posted on our family blog.]

Please say a prayer for our baby girl.