Run4Leah-CureNF

Day # 2 - Post Op

Making Progress!!

Leah is off the morphine and on some "lighter" pain meds and was out of bed twice today!  Once for a short walk and once to move over to sit in her chair for a bit.  Still not too comfortable and not happy with the "hospital routine", but eating a bit more, watching some TV and was very happy to see Christopher and Erin after dinner.

P.S. From Leah: Have a good night everyone and a very big "hello" to Meadow Elementary!!  My Dad rec'd the Jumbo Cards you made me today & he says he'll bring them in to show me tomorrow :)

 

Evening Update- Day #1 Post Op

The photo doesn't lie---

A tough day for Leah but some good news--  Leah was moved out of ICU this evening and hopes for a better night tonight.  Had a little bit of a chocolate chip cookie, but spent most of the day resting. Typically, day 1 is usually the hardest for Leah, as the anesthesia takes a little while to fully wear-off and she is on pain medication to keep her reasonbly comfortable, which can make her a little "out of it".

The comments have been wonderfully supportive and John & Linda hope Leah will be up to hearing some of them tomorrow.

A big THANK YOU for all the "best wishes" & prayers received!

Post - Op Day #1

A typical tough first day for Leah. Not much sleep, lots of pain and not happy at all. Apologize for the late update, John was with Leah at her post op MRI & is now waiting for Doctor update.

Will post more after dinner!
Keep the comments coming!

Out of Surgery

Leah is out of surgery and recovering well. 90% of tumor removed, no spinal fusion needed & no neckbrace anticipated!! Terrific news!! Breathing tube is out!

Hoping for a restful night for both Leah & her parents.

Will provide an update tomorrow after doctors have made their rounds, likely by noon.

Surgery in Progress

Dear Friends of Leah:

This is a 1:15pm update. Leah went in to the operating room a little early, about 8am.

The tumor resection ( removal ) is going well and Leah is doing fine.

Next update will be posted by 7pm.

Thank you for your continued prayers and best thoughts as the afternoon progresses!

The Manth Family

Leah Heads in for 6th Surgery

Leah will head back into surgery tomorrow to remove a spinal cord tumor located in her neck near C2 & C3, whose rapid growth since March has begun to encroach upon the spinal nerves. This will be Leah's 6th major surgical procedure since Fall of 2008.

We expect the procedure to begin around 10am and may last 5 hours, but could go as long as 10hrs if the tumor's removal leads to
spinal fusion or stabilizing procedures. The doctors will be prepared to do whatever is necessary. We will provide an update around dinner time and if possible, around noon.

Given the choice of any pre-op meal, home made or fine dining, Leah chose McDonalds

Leah's Friends & Family to Run NYC Marathon For Neurfibromatosis!

Carol Flaherty & Deb Kavcic (NF supporters & friends), Dan Patterson (Leah's Uncle), Anne Patterson (Leah's Aunt) & Tom Mooney (Leah's Uncle)

Participating at various levels in the Buffalo Marathon for Team "Run4Leah/CureNF" in May wasn't enough for the family and friends pictured above!  Within a week of the Buffalo Marathon they decided they needed to do more and were ready to train even harder to raise additional funding and awareness for Neurofibromatosis.  Carol, Dan, Deb, Anne & Tom set their minds on the NYC Marathon and a collective fundraising committment of $12,500 through the CTF NF Endurance Team.

Leah is one of the youngest patients identified with Neurofibromatosis 2 (NF2). Current NF2 research is aimed at screening thousands of drugs already on the market, developed to treat other ailments, which may also have an impact on preventing new NF tumors from developing and hopefully keeping existing tumors from growing.  The average cost of screening just a single existing drug, on the list of thousands, is $30,000.

It is urgent that we continue our efforts to fund this important screening research for Leah and others facing the lifelong challenges of NF2.  “Leah is the strongest, sweetest girl you could ever meet,” says Anne Patterson, Leahʼs Aunt, “We thought that if she can endure all the surgeries and hardships that she has had in her very young life, we can certainly run 26.2 miles to raise funds that could help her and others like her.” 

All five runners hail from East Aurora, NY and will be running on the NF Endurance Team wearing their trademark bright green bibs.  Flaherty is the only runner to have completed a marathon, thus making this the first full marathon for the rest of the team.  In an effort to continue their funraising efforts, the group is hosting a  

Guest Bartending event at Riley Street Station (27 Riley Street, East Aurora, NY) on Tuesday September 27th from 6-9pm. 

All tips will benefit NF Research.  All are invited to attend!

For more information on how to get involved or donate, please visit
http://tinyurl.com/NFEndurance or call 716.597.7812.

For more information about Leah Manth and Cure NF: http://leahmanth.com or contact John Manth at 716-743-0917

 

Leah Helping Others with NF2!

 

Leah has just returned from her 5th visit to the National Institutes of Health (NIH) located in Bethesda, MD where she is a very active participant in their research about Neurofibromatosis, particulalry, NF2.  They are conducting a "Natural History Study" which is an ongoing study where a team of doctors and research scientists are tracking the progression of Leah's symptoms in hopes of better understanding the "predictors" of NF2 tumor growth.  By tracking their findings, they will be able to better inform newly diagnosed patients with a more accurate prognosis and also point future research studies in the direction of slowing or preventing tumor growth. 

In a Natural History Study, drugs or medicines are not administered, instead, very indepth testing and evaluations take place to observe any new tumors, track growth of existing tumors and their impact on various neurological functions; including sight, hearing, balance, walking (or gait), muscle reaction time etc.

These evaluations take place over 5 consecutive days which can be very long and sometimes exhausting for Leah (and her parents).  Leah participates in multiple MRI screenings as well as various vestibular (balance), audiology (hearing), opthalmology (eye) examinations, and then has follow up consultations with many specialists and researchers. 

The pupil and eye movement portion of opthalmology-Leah puts on her super duper 3D glasses. There are cameras that watch her eye movement as they move a red dot all over the place.

 

Above, researches are monitoring Leah's vestibular nerve function

 

The Moving Chair Test-

 

Balance Testing- The room & floor are moved around and Leah's reactions are monitored~ a bit like the Fun House at the amusement park!  Leaves you feelin' a bit dizzy!

 

After all the results are in, Leah, John & Linda meet with the team of doctors, specialists and researchers and receive the Summary Report.  In short, Leah's hearing tumors (vestibular schwannomas) have grown, the left more than the right, but her hearing is normal in the left and almost normal in the right ear (after all that has been through in the last few months!)  Since her hearing is unaffected, we will watch them for now and no new hearing or inner ear surgery is needed at this time.

The other small tumors in Leah's brain are stable and causing no problems.  Her vision and balance are essentially normal and we consulted with an oncologist about possible future drug studies Leah may be eligible for when she gets a little older.  (Don't be frightened by "oncologist", as they specialize in study and treatment of tumor growth, not just cancer, as well as drug trials which aim to shrink or prevent tumor growth.)  Oncologists are very interested in NF2 tumors and finding alternative treatments, beyond surgery. 
 
Leah does have a new cervical (neck area) spinal tumor which has grown since her last MRI, but is essentially not causing any trouble for now. The consensus is to wait 3 more months for the next MRI and see if any additional growth is observed.  Bottom line- NO SURGERY THIS SUMMER!!  This is terrific news as it gives Leah a chance to enjoy her summer and her upcoming trip to NF Camp and family vacation. 

Thanks for your continued support and Blog comments!  We'll update in next week or so with some camp photos and stories!

Happy Summer-
The Manth Family

Leah is Healing Well & Off to NIH

 

Leah enjoying a day every 5th and 6th grader looks forward to,  the All Day Kickball Tournament at Meadow Elementary 

Leah's leg pain (from where the took the donor nerve) is essentially gone and she was able to fully participate in the Kickball Tourney.  Unfortunately, her team did not ultimately win, but working together as a team and having fun is what the day is really all about.  The weather cooperated and John spent the whole day pitching on one of the 5 fields of play, with Linda helping referee part of the day. 

This week, Leah and Linda will travel to NIH in Bethesda, MD to continue Leah's participation in the Natural History Study going on for NF2.  The purpose of the study is to track tumor growth, symptoms and surgeries, so that valuable information can be gained from Leah's experience which can be documented and shared with researchers and doctors to better understand the progression of NF2 in children.

John will fly down Wed. evening and join them for a day of fun in DC before meeting with the doctors for a summary of all of the testing results, including an updated MRI to evaluate the growing vestibular schwannomas (on the hearing nerves) and the new cervical spine tumor which is growing near to the location of the previously removed cervial spine tumor. 

Good News--Leah's hearing has improved since the May surgery in Boston.  She now has only a "mild" conductive hearing loss which is a significant improvement over her previous "moderate" rating.   Because the remaining tumor was able to be completely removed, improved hearing was an expected result, but because the hearing bones were manipulated again during the May surgery, it was a welcomed relief to hear the good news.  Patience is what is now needed as we wait to see if the nerve grafting was succesful in improving her right sided facial paralysis... many more months of healing to go. 

In July, Leah will enjoy one week of a Neurofibromatosis Kids Camp in Virginia, where she will meet other children with both NF1 and NF2 and at least half the couselors at the camp will also be NF "fighters"  themselves. 

We appreciate everyone's continued support and will send an update once we return from NIH and have had an opportunity to meet up with Leah's medical teams in both Maryland and Buffalo.

Enjoy the summer together with family & friends!

The Manth Family

Enjoying a Sunshine in Boston

John, Leah & Linda in Harvard Square

...we flew home Saturday evening after a day in Boston.  Leah was able to walk through Boston Garden (where the Bruins will play Monday night) and watch the stage get set up for a New Kids on the Block/Back Street Boys and meander through their Sports Museum---they had the place to themselves!  

Had a late lunch with good friend (and chauffer extraodnnaire!) Dave Gaye and a surprise visitor Aunt MaryBeth-in town for her Boston College reunion.  Dave dropped us off at the airport and we had an uneventful flight home.  Leah is thrilled to sleep in her own bed without any interruptions!!  We hope to get her back to school one day this week, we shall see how it goes. 

We wish to thank everyone for their supportive thoughts they shared on this blog and for your prayers throughout this surgical journey.  Leah will hopefully be able to fully enjoy the end of the school year activities.  Her next MRI is at our biannual visit to NIH in Maryland at the end of June, and then she is off to NF camp (on her own!!)) in Virginia early in July.  A much deserved break and chance for a little independence and summer fun after all she has been through the last few months.

Love to all-

John, Linda & Leah