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Alyssa’s Alarming Arteriovenous Malformation. Please help!

  • Craniotomy

      8 May 2019
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    After the embolism we were quite happy that the risk was reduced significantly but we knew it was not over yet.

    Dr Andrew Law (our brain surgeon) informed us that the remaining 10% of the AVM in her brain (malformed vein- prone to rupturing) HAD to be removed through a craniotomy. If it wasn’t removed, it could grow bigger and present similar risks as before the embolism. Simply, the idea was to remove every last bit of the AVM and put this thing to rest forever. We did not like the intrusiveness of cutting a hole in her skull, removing the AVM and the long recovery associated with a craniotomy but we had tried everything else- this was the next step.

    On May 6th 2019 we came up for pre-operative scans and test to prepare for the craniotomy the next day. May 7th Alyssa was nil by mouth from 6 am, she was admitted to hospital at 1030 am and was scheduled for surgery at 1 pm. Unfortunately the surgery before her took longer than expected and Alyssa did not go into surgery until 3 pm. Waiting that long without food or drink was an emotional time for everyone. I (Dave) took her into the surgical room and supported her as they put her under general anaesthetic.

    A long 3-½ hour wait ensued. Waiting is tough- too much thinking through different scenarios for concerned parents. We were relieved to see her in the recovery room and hear the surgery went very well. The doctors think they got all of it!

    Today, May 8th, she has been moved form ICU into her own room; the head bandage and catheter has been removed. She is returning to normal. The swelling will remain for a few days but everyone is positive with her progress as we see her returning to normal.

    Now we have a week in Starship Hospital before she has one more scan to confirm the doctors have removed it all. After that it is two weeks at home in Whakatane with no school for Alyssa. Depending upon her recovery rates, the subsequent next 4-8 weeks is transition back to school with possible half days or similar.

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  • surgery day and day after

      26 March 2019
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    22 March 2019-- Alyssa has shown incredible maturity and poise in light of her upcoming surgery.

    We are extremely proud of her ability to just 'get on with it".

    Alyssa came out of operation around 2ish and was in a lot of pain but after some pain medication she was ready to eat within a couple hours. We are awaiting to hear from Dr Brew. Apparently they got most of it but some smaller AVM veins still remain. At present we are not sure what that means but will know soon enough. Cheers every one❤️

    23 March 2019- We met with Dr Brew and he was able to get 90% of the main Dural Fistula vein which is the "main offender" and is like a spider vein. Unfortunately, there were smaller unreachable veins he was unable to glue shut. These tiny tiny veins were untreatable today through embolism methods. These ones are classed as AVM’s. So another plan to address these needs to be organised through a multi-disciplinary team of doctors. The doctors will meet and contact us with their ideas in the next couple weeks.

    Overall, the risk has been dramatically reduced by 90%. Alyssa had no complications or lasting symptoms from the operation. We are overwhelmed with the result! We have more time to assess the path forward. We are 90% closer to the end❤

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  • preparing for surgery- up in Auckland

      26 March 2019
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    Wednesday 20 March- So here we are up in Auckland at Ronald MacDonald house as Alyssa has been at Starship Children’s Hospital getting ready for the embolisation operation on Friday 22 March 2019. Dr Stefan Brew who is an Interventional Radiologist is attempting obliteration with embolisation. Through non invasive surgery up through the groin (normal speak finding the vein getting into it with a glue!!! And if all works that glue will starve the vein and kill it!!!). This all goes on tomorrow 9 am. Last night we went to Kooza Cirque du Soleil and she was pulled up on stage! Excellent moment for her.

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  • last doctors appointment

      26 March 2019
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    Hello to all; it time for a long overdue medical update on Alyssa

    After months of MRIs, angiograms, including super selective angiograms, the doctors believed they have all the information to properly diagnose her condition.

    On Thursday February 14 2019 we went to Starship Children’s Hospital Auckland (the best in NZ) to hear what the final diagnosis and treatment options were. Doctors believe Alyssa has what is called Dural Arteriovenous Fistulas with Cortical Venous Drainage. Dural arteriovenous fistulas (DAVF) are abnormal vascular connections between dural arteries with cortical veins.

    Both dural arteries and cortical veins are near outside of brain (good- no deep surgery needed hopefully). Dural arteries feed fresh oxygenated blood to brain while the cortical veins drain the brain of deoxygenated blood. Simply it is not draining properly and building up in pressurised pools of blood. These can cause brain bleed ruptures and the cortical veins need to be “cut off “ or “cut out”.

    As seen below, the veins are not formed correctly, which puts huge amounts of pressure on the arteries moving into the veins. These are not truly representative of Alyssa’s exact condition but gives you an idea.

    Treatment plan:

    Three options: embolisation, surgery, or combination of both. The idea is without the malformed arteries and veins they will eventually die and new ones will form- hopefully nice well-formed ones. This is the preference order we will “attack it”

    Alyssa’s DAVF is behind her left eye- this makes it a bit more complicated than if it was on top of the skull.

    1. Embolisation- a non-invasive technique to stop or prevent haemorrhage by introducing a foreign mass (glue or other substances) to cut off the blood flow- thus stopping blood going down the wrong path where it cannot drain.

    Risk: least intrusive and least complicated treatment. There is a 50-80% chance of success. Unfortunately there is a 5% chance of impaired vision. Worst case blind in one eye.

    If embolisation does not succeed then surgery is the only other option.

    2. Surgery- Cut a hole in the skull find the little bastard and cut it out. Gone. Problem removed.

    Risk: Open brain surgery has various risks, some which can have permanent life-long cognitive and physiological consequences. In Alyssa’s case this is mitigated because it is close to the outside of the brain. Open surgery would leave a very large scar (under her hairline to hide it) and she would have titanium screws to put her skull back together.

    3. Combination of embolisation and surgery

    Risk- as above

    4. Radiation therapy- zap it with radiation= Gamma Knife or similar radiation therapy.

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  • Sept 4 update

      4 September 2018
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    Sept 4th update

    We were unsure how Alyssa would adjust to going back to school last week but were pleasantly surprised. Last week Alyssa went back to school doing half days with a limited schoolwork load. She has handled this well building her concentration and physical stamina and she has definitely enjoyed the social aspect of seeing her schoolmates again. Our little social butterfly is back! She has not had to take rests or breaks at school thus far so this is boding well.

    She felt so good after last week that she has asked to do full days at school this week. We are cautious but also wanting her to build naturally. She knows how her body better than anyone else so we do not see a reason not to give it a try. Besides, her school, our doctor, Alyssa and us have not identified any issues thus far. Monday at school went well with no reported worrying signs. We cannot believe she is doing so well so far. Thank goodness!

    On Wednesday 5 September she has her first appointment with a local paediatrician at Whakatane hospital. From there we expecting to be referred to a child neurologist somewhere in the North Island to have her examined again and begin planning her AVM treatment pathway.

    Thanks to everyone everywhere, especially locally that have made our return to work, school and our community very welcoming and comfortable. Everywhere we go, people ask how she is and how we are adjusting. The responses from our local community prove how awesome small town NZ truly is.

    Thanks wholeheartedly,

    The Ledbetters

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  • Our return to New Zealand

      28 August 2018
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    After waiting a couple days for processing, Allianz travel insurance arranged for a safe and direct flight home on Air New Zealand Airlines. I want to give very big and special thanks to Allianz travel insurance, they have been absolutely phenomenal throughout this journey. We do not like to think what this journey would have looked like without their support.

    The doctors at Harborview Medical Centre gave Alyssa world-class medical treatment and were correct that she would be safe to travel home. Alyssa travelled well and looked after her body on the trip home by drinking enough water, walking about the plane and sleeping when necessary. She was so excited to get back and see loved ones.

    We arrive back in New Zealand on Saturday 25th August and spent the weekend at Tarnya’s parents house with our most close friends and family. Alyssa was overwhelmed by the reception she received on her homecoming. I do not think there was a dry eye in the room that day. Our dog Ponyo went absolutely berserk running around and jumping up on us in excitement. Alyssa was smiling ear to ear. What a great feeling for everyone!

    On Monday 27th August we had a doctors appointment with our local GP and a referral was made to a local paediatrician. After that appointment a further referral will be made to experienced neurosurgeon. We also met with school officials to transition Alyssa back into school safely starting tomorrow. She will only doing half days with a limited workload. She will be monitored closely and a safety plan has been developed in case there are any complications. We are quietly confident we are going to have success! Alyssa is showing signs she is gaining strength and stamina. We are so very proud of our little warrior!

    Alyssa would like to thank everyone for supporting and following her through this page. She is buoyed by your support through emails, responses on Facebook and actions of support. It means so much to her!

    Thanks again,

    The Ledbetters

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  • Last USA doctors Appointment

      23 August 2018
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    Yesterday Tuesday 21st we had two doctors appointments, one with neurosurgeon Dr Kim and with Dr Dawson- Hahn (paediatric).

    Both have given us the go ahead to fly back home to NZ. Now it is just a matter of contacting our travel insurance company to ensure that the doctors’ recommendations for the flight are followed and new plane tickets are rebooked. Hopefully this is only a matter of a couple days or so.

    Alyssa continues to slowly recover. She is gaining strength and stamina but tires easily after limited physical activity. She also experiences pain in her back if she is sitting upright for 2 hours or more. She is not on any prescription medicine, only taking Tylenol for the minor back pain. She often takes naps or rests during the day by having a lie down. Therefore, both doctors have recommended that Alyssa have the ability to lie fully supine on the flights home. Secondly, Alyssa will just need to get up and walk around every hour for 10 minutes or so and take a lie down every couple hours. It will be important that she continues to stay hydrated during the flight.

    We are all excited to get back to NZ and see our friends, get back to “normal” activities like work, school and our hobbies. I am personally looking forward to a long walk on Ohope Beach, fresh fish and chips and a dinner party with friends and family.

    Congratulations and thanks for everyones contributions. We have reached just over $59,000 for Alyssa so far. WELL DONE!!

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  • A Big Day Out- Woodland Park Zoo

      18 August 2018
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    August 17th- prior to being discharged from Harborview Medical Center, Alyssa was gifted a couple tickets to Woodland Park Zoo in Seattle as part of her reintegration / rehabilitation strategy. Simply, it was a way to get her out and about and “push” her to become more active. Alyssa invited Aunt Tracie and her three girls Ava, Gia and Lola. My long time friend Christian joined us too.

    Alyssa enjoyed the day immensely with her friends and family. Her highlights were bug world, sloth panda, penguins and the monkeys, apes and orangutans. She has said it was good feeling stronger and note like normal again.

    We finished the day by going out to dinner at a Mexican restaurant, which is one of her favourite types of food.

    Alyssa’s next appointment with neurological and paediatric doctors is on Tuesday 21 August at the hospital. If all goes well we could be given the go ahead to fly back to NZ!

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  • Out of Hospital - 2nd time

      14 August 2018
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    Today, the 13th August she continues to have small headache and some neck pain, but no major dramas- YEAH! We are seeing small improvements daily. We have our first outpatient appointment with doctors tomorrow. They will monitor her progress thus far and estimate our return date to NZ as she remains not cleared to fly home yet. Once home in NZ, she can begin the next stage of her treatment.

    Thanks to the medical team at Harborview, our local GP in Whakatane and the vital support of others whose children have been through an AVM, we are beginning to learn about the next steps for Alyssa. The USA neurological doctors will need to liaise with a NZ neurological doctor in NZ to share information and assess the best path forward for Alyssa, hopefully a recommendation for Gamma knife surgery. The NZ doctor can then apply for a “high cost treatment” with the Ministry of Health in NZ. From there we will be assessed to see if Alyssa meets the criteria for Gamma Knife surgery. Hopefully they will authorise the procedure in Sydney, Australia, as Gamma Knife is unavailable in NZ. When eligibility is ascertained, we will know the probable amount of Alyssa’s medical costs. Estimated costs range widely starting at $45,000 upwards to 2 million dollars according to various websites.

    We would also like to give special thanks to our employers and co-workers who have been remarkably supportive of us.

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  • In and Out of Hospital

      14 August 2018
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    On 7th August 2018 Alyssa was released from Harborview Medical Center to her grandmothers residence in the Seattle area to continue her recovery through outpatient treatment. The first thing on Alyssa’s mind was shopping- nothing like retail therapy for our resilient little warrior! After all, she had been in a hospital gown for nearly three weeks by this time. That evening her Seattle relatives met back at Grandmas to celebrate her release. Sadly, she continued to complain about a painful headache and went to bed early.

    That night was restless for Alyssa, she woke several times during the night. The next morning she complained of escalating pain in her head, describing the pain as nearly the same as when she had the first brain bleed. Her symptoms were getting worse; we were calling the hospital for advice. When she complained of tingling and numbness in her limbs we called 911 again.

    The Medics were very quick and once again we were rushed back to Harborview Medical centre and admitted into ICU for the second time.

    Over the next several days various neurological, blood tests, X-rays and a CAT scan were completed. She had an abnormally high white blood cell count indicating she may have an infection in her lungs or spine. A Lumbar Puncture (spinal tap) was conducted to release the pressure of the cerebrospinal fluid on her brain and to test for spinal meningitis or other infections. She was put on a heavy course of antibiotics to minimise risk.

    Over the next several days family and friends daily visited us bringing gifts and expressing their support. Dr. Brown the ER doctor and Alyssa’s guardian angel, who was there at the first rupture visited and brought a huge smile to Alyssa’s face. As several days passed Alyssa’s symptoms reduced

    On 11th she was released from Harborview Medical Center for the second time to complete outpatient treatment. This time we are more aware of how TV, video games, noise and other stimuli (including shopping) can affect her recovery, and overall health and disposition. Alyssa has to take it easy and spend her time in a quiet environment without too much going on around her.

    When we returned to Grandma’s place we were all shocked to see how it had made the news back home in NZ. We never dreamed of that! Alyssa could not believe she was in the papers and on the radio. She was “becoming world famous in New Zealand”. How Kiwi is that? Alyssa checked the GIVE ALITTLE page and saw it begin to grow and grow and grow. The tsunami of support from NZ and all over the world was phenomenal. We all sat together and cried tears of joy. Thanks to everyone out there who are showing his or her concern for Alyssa.

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