A Surgical Plan is in place

Wow, it has been a while without any update- although our lives have been crazy busy and between lack of time to sit and write a new update and my computer crashing (Ok, so maybe it didn't crash but suffered a dramatic water accident) I am just now getting to this long awaited update.

Taygen has kept us very busy the past few months.  We have made numerous trips to Boston for multiple appointments with Neurologist, Epilepsy doctors, Orthopedic doctors and Ophthalmologist.  We spent almost a week inpatient for long term monitoring with EEG, a PET Scan and 2 SPECT scans. After this round of testing her Epileptologist presented her case to the Epilepsy surgery board where they decided that they wanted additional testing done before deciding if surgery would be the best option. We returned to Boston in mid October for a new MRI and a thorough developmental aassessment.
Just last week, after a few weeks of waiting, Taygen's case was presented again to the Epilepsy surgery Board where they decided that She is an ideal candidate for surgery.  We were referred to the Director of Neurosurgery at Children's Hospital Boston who we met with yesterday to go over all the details and schedule Surgery.
We went into the appointment yesterday understanding that the testing Taygen's underwent the last few months showed the seizures starting on the right side of her brain but I was under the impression that they were initiating from her Schizencelephic cleft.  (One of the conditions she has is called Schizencephaly which means that there is a cleft or slit on one side of her brain- this cleft is lined with Polymicrogyria which means there are many small folds of the brain)  I based my research of the possible surgery on the thought that they would be either removing or separating a smaller area of the brain around this cleft similar to a Lobotomy.  Unfortunately I was wrong- The actual procedure they are planning is considered a Hemispherectomy where they plan on disconnecting the right side of her brain. 
This type of surgery has a success rate of around 80% of being seizure free, but even a reduction in the amount or intensity of her seizures would be a huge benefit.  With medication treatments having success rates of less then 50 % and each carrying the risk of major side effects Her doctors feel confident that surgery is the best option.
The Surgery is scheduled for December 20th and we are expected to be inpatient for at least a week with the possibility of being released to a rehabilitation hospital.  The recovery process with be long and will include intensive therapies.
Unfortunately we will most likely be spending Christmas and possibly New Year inpatient in Boston but hope to come out of this seizure free! Please keep Taygen in your thoughts and prayers.

It has been a little over a month since my last update- and oh what a month it has been!

On August 3rd Taygen turned ONE!  It is crazy to think my baby girl is already a whole year old.  We celebrated with family and friends with a big party.  My sisters and parents helped us decorate the whole house, patio and backyard in yellow and white for her "You are my Sunshine" themed birthday Party.  It was an extremely hot day and we set up Taygen's new pool (Thanks to her Aunt Gigi (Angie) and Uncle John).  Taygen wasn't very interested in her cupcake and slept through the beginning part of her party.  Thank you to everyone who came and helped make her first birthday so memorable! We were also surprised with some amazing news- as we were opening gifts from my sister Christina and Jim (Aunt Cici and Uncle Jim), one was a invoice from Scottsdale Healthcare announcing a new Cousin for Taygen arriving in mid-March.  We couldn't be any happier or excited for baby Kane expected arrival. 
My only regret is that I spent too much time visiting and socializing I didn't not capture as many photos or videos - so if anyone who was there has any, Please send them my way.  Next year I will be sure to have a designated photographer/videographer for her party.


Since the last update we remain to be unsuccessful with treating Taygen's seizures (Infantile Spasms) The Keppra alone was ineffective so we began treatment with a medication called Vigabatrin (Brand name Sabril).  As a potential side effect, this medication could cause permanent vision loss.  To monitor this we will be traveling to Boston every 3 months for monitoring with the Opthalmology clinic at the Children's Hospital.  Although the Vigabatrin started out showing to be promising- her seizures reduced from 7 to 8 clusters a day to 2 clusters a day but have since increased again- even though we have upped the dosage 2 more times. We have a plan to up the medication one more time before looking into other treatment options.

We have been following with 2 other Opthalmology clinics for Taygen's Cortical visual Impairment (limited vision due to abnormalities of the brain) and during one of her recent vision exams it was determined that she is severely far sighted.  Although we are not sure exactly how much Taygen can see, They prescribed her glasses.
We have had her glasses for about 3 weeks now and inconsistently see some improvements.  Surprisingly she doesn't seem to mind wearing her glasses.  They hook behind her ears to stay on and she looks absolutely adorable in them.
At one of her Opthalmology appointment the doctor had warned me that strangers would ask or make comments assuming that Taygen was wearing glasses as a fashion statement or that it was cruel of us to make her wear them, although a lot of development is dependent on vision and they are purely for her development and benefit.  I thought there was no way people would be that ignorant- but I was proven wrong.  We were in Glens Falls with Angie and John and my parents and we were at a restaurant when this elderly lady stopped me on our way to our table to ask me why Taygen was wearing glasses.  I kindly explained to her that she was farsighted and she needed them to see.  She made a few comments basically saying that it was torture - I had to explain to her that it was not torture and that Taygen actually does not mind wearing them as she may actually be able to see somethings.  I am now aware that this is possibly the first of many comments- But for the most part we get comments on how adorable she looks with them.

We will be traveling back to Boston this weekend.  Taygen will be inpatient at the Children's Hospital where she will undergo Long term monitoring with EEG, a possible MRI, a PET Scan, and a Spec scan.  This testing is to determine where the seizures are starting and how much of the brain is effected.  They will present her test results to a committee where they will determine if she is possibly a good candidate for brain surgery to treat the seizures and reduce her risk of different types of seizures.  
If surgery is not a option or is not the best option- we will look to begin a new treatment plan with hopes of not only reducing her seizures but possibly stopping them.


Since my last update I had surgery where they removed a wedge section of my lung where a few spots of concern were.  After my body not responding well to Oxycodone I ended up staying 2 nights in the hospital and Pathology results showed no cancer and they actually believe the spots are scar tissue.  I will now have to follow- up with the doctors at Roswell with another CT Scan at the beginning of October.
Since the surgery I have suffered through some major coughing spells where I do not feel sick in any way but cannot stop coughing.  After 2 chest X-rays and a visit to the ER after an awful night of non-stop coughing it is believed that with my body healing from the lung surgery that my lung is pulling my trachea causing irritation and hopefully will get better over time :/

it has been a crazy busy month but things seem to be settling down a little with only one trip to Boston scheduled for August/September and One trip to Buffalo scheduled in early October.  Hopefully we can plan some trips for fun and not always with medical appointments involved.

July 5th, 2012

 Although my intentions of this blog was to post cool pictures of Taygen (which I have yet to figure out) for now I will use to it update everyone on the medical side of our lives.

This may be long- Lots to update on:

Last week I went for my follow-up appointment at Roswell.  My scan, 6 weeks earlier, showed a few spots of concern on my lungs and a few enlarged lymph nodes.  The doctor prescribed an antibiotic with hopes that it was an infection or inflammation.  Although my labs looked great, unfortunately the new scans showed the spots of concern were slightly larger.  Due to my history of liver failure with the Hodgkins Lymphoma they decided not to wait and schedule a surgery to remove part of the lung that shows the spot of concern.  We met with the surgeon and he described everything in detail and showed us my PET and CT scan.  I will have to be in the hospital for a few days after surgery until the lung heals.  I will also need to have a breathing test done before and after the surgery to ensure that all is well.   

If the biopsy comes back as non-cancerous I will need to have a few lymph nodes checked.  

Since when I had the Lymphoma in 2008 I had liver failure I was unable to use any chemo treatment and had only radiation treatment.  This means that if this is cancerous then I have full chemo options available, which hold a cure rate of over 90%.

While at Roswell I also met with Dermatology again where they performed another full body check.  During the exam they found another spot which looked abnormal and decided to do a biopsy.  

The Dermatologist called on Tuesday with the results- the biopsy came back as mild-moderately abnormal but not Melanoma.  This means that they got all the abnormal cells but if they had not biopsied the area it may have turned to melanoma later.

We were at Roswell Wednesday and Thursday last week- Thursday morning before all my appointments I received a phone call from Boston Children's Hospital Epilepsy Center saying they had an appointment available the next morning at 8 a.m..  With our appointment not scheduled until August 20th and being desperate for Taygen to be seen ASAP we accepted the appointment expecting to be leaving Roswell around 4 pm that afternoon and having an 8 hour drive.  We didn't end up leaving Buffalo until 7 pm and arriving in Boston at 4 a.m. leaving very little time to settle in before having to leave to the hospital for our appointment. 

While in the waiting room my mother was feeding Taygen when she started to have a cluster of spasms.  She notified the reception desk where they got a nurse and the Doctor to observe where they confirmed they looked like infantile spasms.  Our appointment lasted over an hour where we went through Taygen's history.  For being less then  year old she has quite the medical history already.  While going through her multiple diagnosis and medications the doctor asked if I work in the medical field due to understanding all the medical terms. 

A few weeks ago we went back to Burlington for a follow-up EEG before we were going to start the Vigabatrin (Seizure medication which could effect her eyes). The EEG actually looked better then the one she had before starting any medications for the infantile spasms, but she was still having multiple clusters a day so we decided the next medication we would try would be Keppra- less aggressive.  

So far the Keppra has not stopped the seizures but the new doctor in Boston's plan is to up the dose of the Keppra to the max dose fore her size and give that two weeks an if it does not decrease the number of spasms in a day we will try the Vigabatrin next.  If Vigabatrin doesn't work our next step will be to try to Ketogenic diet.  Meanwhile we are also going to go through lots of testing including a PET scan and long term monitoring with EEG to see if Taygen is a good candidate for a surgery procedure that could possibly either split the hemispheres of the brain or remove the brain tissue which is causing the seizures.  Although surgery is not our first choice of treatment, it is nice to know more about the brain activity and where the seizures are originating from and to alas have surgery as an option if medications do not work.

Her new doctor also sent in a referral for a developmental doctor along with a orthopedic doctor.  We will have many trips to Boston in the near future.
Unfortunately on our way home from Boston my car decided to break down and it currently parked in my Sister's front Yard in Albany.  Thanks to my Sister and her husband for driving us half way home and my Aunt Denise for meeting us and taking us home!  I am not in search for a new vehicle- recommendations for a car comfortable and reliable for traveling welcome!

Although life has yet to slow down I feel like we have a good plan moving forward.  I hope to be able to update everyone with great news next!

I have heard there are troubles of more than one kind.
Some come from ahead and some come from behind.
But I’ve bought a big bat. I’m all ready you see.
Now my troubles are going to have troubles with me!
-Dr. Seuss

Tango in a Hurricane

So as the old saying goes “When it rains it pours”.  Although I try not to be a negative person it has been a rough few weeks.  I’m sorry that this is so long, but like the Tango our lives have been somewhat complicated lately

With Taygen being diagnosed with having infantile spasms we began a treatment with the highest hopes of never seeing another spasms.  All looked good for the first week where the treatment showed promise and the spasms occurred less regularly.  Through the second week the spasms, although less intense, were happening more frequently.  After a visit to her neurologist we tried upping the dose of the medication for a few days and still the spasms occurred.  We are now in the process of weaning her off this one medication and then we will begin a new medication, which has more long-term side effects.  The new medication that the neurologist is recommending could cause long term effect to her vision, which is already impaired due to the brain abnormalities but we would rather deal with visual impairment then the damage and developmental regression that the seizures could cause.

Last Monday we traveled to Roswell for my follow-up check for Lymphoma.  I was scheduled for a CT Scan, a visit with my Oncologist, a visit with my Radiation Doctor and a visit with the High Risk Breast Cancer Clinic for my heightened risk of Breast cancer from the Radiation.  I was also due to see Dermatology but they initially were unable to get me in until a few weeks later- which I had no intentions of traveling 5 hours just to see Dermatology (Again at higher risk of skin cancer from Radiation- along with my super light skin tone and Red hair/Blue eyes).  I was rescheduled to see them in November when my next follow-up appointment would be.

Taygen Has been super fussy- a side effect of the medication she is on, so Jesse stayed in the Hotel with her while I went to my appointments alone.  I was comfortable as I had been through these appointments numerous times before and confident that all was well. 

Roswell is a beautiful Hospital- They often having someone playing piano or singing in the main lobby its bright and they have numerous cheerful volunteers wandering around offering snacks, candy or activities to patients and their families.  Before heading to my CT Scan appointment I had to stop by phlebotomy to have some blood drawn.  There are 4-5 phlebotomist  in a room where they all talk between each other and the patients talking about anything from recent news, funny jokes or anything to get your mind off of being poked.  I like that they even try to match your outfit with a colorful bandage or warrior wrap as I like to think of them. 

Getting my CT Scan done was mostly uneventful- Drank contast mixture, IV placed, Scan completed- IV taken out- another warrior wrap on my arm then it was off to see my Oncologist.

While being called from the waiting room an elder lady came up to the nurse that was bringing me back and told her some amazing news- She was just given the all clear- She was in remission.  She then hugged the nurse.  When the nurse brought me into the exam room she started crying.  It was so heartfelt to witness this and it brought me back to 4 years prior when I got the most fantastic news of being in remission.  The nurse dried her tears and told me that the doctor would be in shortly. 

It felt like forever sitting there waiting for the Doctor and when he finally came in it wasn’t his typical “Hello Ms. Clark, How are you doing, Everything looks good and we will see you in 6 months.” Before he scoots quickly out the door to move on to save another cancer patients lives.  This time was different.  He started asking me if I had been sick or had a cough- before answering I asked “Why, are my lymph nodes enlarged?” which is what they look for with lymphoma but could also just mean an infection or illness.  He quickly responded “No, No, No.”  He must have seen how worried I was.  But he did say that I have a few spots on my lungs, which it is unlikely for Lymphoma to travel to the Lungs and it is more likely an infection or inflammation.  He gave me an antibiotic with hope of clearing any infections and planned another CT scan in 6 weeks to see if they are gone- If not we may need to have a biopsy to test.  I showed him a spot on my hand, which has been extremely dry, and he scheduled to have me see dermatology that day to make sure it is nothing that could be infected.

After leaving the Oncology clinic I went to visit my Radiation doctor- One of my favorites.  This Doctor was a resident 4 years ago when I was getting my radiation treatments.  She has stuck with me through it all and has been my go-to resource for everything.  After the Doctor who was in charge of my radiation treatments 4 years ago left she took over my case.  She always makes me feel better and takes time to answer everything question I have.  She looked over my CT scan and decided to schedule a PET Scan in 6 weeks as well, just to be sure everything is ok.  Then it was off to Dermatology to have them look at my hand.

While at the Dermatology clinic I asked if there was any chance I could have them do the exam which was scheduled for November now instead, since I was suppose to have it done in May.  At first she said that they didn’t have time but then a few minutes later she returned and said that they could since I was already there.  While doing an exam she found a spot on my upper back which I have had for as long as I can remember but had gotten slightly larger over time.  She stated that she didn’t really think it was anything to be concerned about but wanted to biopsy it anyways and mentioned results from the biopsy usually take up to a week to come back. 

I received a phone call on Wednesday, 2 days after my appointment, it was the doctor from the dermatology clinic – She said that it was really good that they did the exam and biopsy because I had an early stage of melanoma.  I will have to return to Roswell this week to have another procedure done where they will remove more cells – large enough to make sure they get all the abnormal cells.  Luckily it was caught early enough where they are not concerned with it spreading to the lymph nodes but I will be monitored more closely in the future.

I have crazy mixed emotions over everything that has been going on.  Yes, it is a lot while working full time and remodeling a house- which is getting close to being done. (Thanks to all our amazing family for helping!) But I am extremely thankful everything has been caught early and hopefully controlled early before spreading to become a larger problem.  I have learned to never ask what else could go wrong- as I really don’t want to know the answer.

So with the saying “when it rains it pours” I guess I will just have to get a really cool inflatable raft, with a glass of wine (full of cancer fighting antioxidants) and go floating!

Life was starting to settle as we finally closed on the new house and work is in full progress and will hopefully be moved in within a few weeks.  Taygen has been doing well and we have figured out her prime times for therapy and are starting to get into a decent routine and life was settling into a new normal until this past week. 

A few weeks ago When rocking Tay to sleep she would sometimes be woken from what appeared to be a muscle spasm in her arm and legs.  These spasms would would only last a second or two but would repeat every 5-10 seconds for around a minutes then she would settle and fall back asleep.  She wouldn't cry or appear uncomfortable so we didn't think too much about them.  At first they would appear every few days and randomly, then in the last week we started to notice them happening every day and consistent with sleeping or waking and lasting longer (2-3 minutes).  I caught a few spasms on video and emailed them to her neurologist.  I sent the video on Friday and we were then scheduled for an EEG for Monday in Burlington to test for seizure.   While being monitored Taygen had 2 spasms and the doctor was confident with diagnosing her with having a type of seizure called Infantile Spasms.

Infantile Spasms are rare and consist of a cluster of seizures.  If not caught early and treated they may stop or regress a child's development.  It is believed that Taygen's spasms are related to the abnormalities in her brain which put her at a 90% chance of having seizures, although we had hopes of being in the 10 percent of not ever seeing them.  Infantile spasms usually stop by age 5 but she will still be at risk of other types of seizures.  Unrtil recently I always assumed a seizure included loss of consciousness along with convulsions, but I have recently learned there are at least 6 different forms of seizure.

We were admitted onto the pediatric floor of Fletcher Allen Hospital in Burlington again on Thursday to begin treatments.  Taygen will need to get 2 injections a day of a medication called adrenocorticotropic hormone (ACTH).  It isn't clear on why or how ACTH works to treat infantile spasms but it is the most common medication used with the greatest outcome.  Taygen will be closely monitored for high glucose and blood pressure level for the next 5 weeks while on the medication.  

We are now home from the hospital where we learned how to give the injects.  We will have a home nurse come in 2-3 times a week to check on Tay and will have weekly follow- ups with the doctors. We will return to Burlington for a follow-up EEG after 5 weeks with hopes that all seizures are gone and no more treatment is needed. 

So far Tay have been tolerating the medication well and although the spasms have not disappeared they are happening less frequently.  Please pray that the medications works as this poor little girl has already been through so much.

On this months hospital tour schedule we will also be traveling to Buffalo for a follow- up CT scan at Roswell on Monday the 14th and we hope to be celebrating 4 years remission from Hodgkin's Lymphoma!

Don't waste your time and energy asking Why something happens, spend it praying for the strength to get through it!

Hey everyone- so here is my attempt at a blog- I find myself reading other's witty and informative blog post about how interesting their current lives are and though I am not all that witty I can use this as a way to let everyone in on some things which go on in our sometimes crazy- some days boring life.  Please forgive me as I am not the best writer and will often have misspelled words (even with spell check) and may not use proper grammar. As soon as I figure this blogging stuff out I will post some pictures of her milestones.

So you may ask- what is with the title "learning to dance in the rain" - well it stems from my favorite quote "Life is not about waiting for the storm to pass, but about learning to dance in the rain."  I found this quote approximately 3 years ago while I going through treatment for Hodgkin's Lymphoma.  Although it was one of the toughest struggles of my life, thinking of this quote helps me think of the positives going on at the time. Life is full of numerous struggles- and sometimes I feel as if I was given more than my fair share.  I also have to admit I have been given so many blessings in return.  I have many supportive family and friends, an amazing husband and the most beautiful daughter ever.

The last year has been a huge roller coaster ride for my family and me.  I had an amazing pregnancy and on August 3rd, 2011 we welcomed our amazing daughter Taygen.  Here it is the end of March and we are about to celebrate her 8 month birthday.  Eight months has flown by ridiculously fast and she has grown and changed in so many ways.  I am often asked about Taygen's conditions and how we received the diagnosis- here is a brief history:

When Taygen was around 2 months old we started noticing her left eye would set in- looked somewhat like a lazy eye.  With lazy eye being on both sides of our family we mentioned our concerns to her pediatrician hoping that an earlier diagnosis would result in early treatment to fix what was wrong.  The pediatrician assured us that it was normal for her eyes to not be fully in sync until around 4 months of age.  We also notice some jumping or rapid movements of the eyes so she decided to send us to an opthamologist.  A few weeks later the opthamologist dilated and examined Taygen's eyes and we were told that it was probably just some extra skin on one eye making it look like it was set in and would appear more normal as she grew.  This news was reassuring until her 4 month check up at the pediatricians office where we were talking to the doctor about her recent developmental milestone achievements.  I shared a concern that although she is rolling over, holding her head well, bearing weight on her legs she still didn't seem to be focusing on people or toys and hadn't been reaching to grab toys.  The doctor examined Taygen and agreed with our concerns but was confident with the Opthamologist's exam and decided the next step was to see a pediatric neurologist.

We saw a neurologist in Burlington the following Monday and was sent for a MRI that Thursday.  The next day I received a phone call with a  diagnosis- Taygen has 2 rare conditions of the brain- Schizencephaly and Polymicrogyria.  Schizencephaly means that she has a cleft on one side of her brain and Polymicrogyria means that she has too many folds in the brain.  Although it is unknown what has caused the conditions we have had genetic testing which came back normal and she was tested for a virus which is commonly linked and that also came back negative.

We also met with another pediatric opthamologist who believes Taygen has Cortical Visual Impairment caused from the brain abnormalities- This means that there is nothing wrong with her eyes or optic nerve- but with how the brain is processing what she sees.

We have since traveled to Boston to meet with a neurologist at Children's Hospital of Boston where they are studying these conditions. Also just last week we met with the nationwide leading doctor of Polymicrogyria.  He was in Burlington for a seminar for their doctors and residents and he agreed to evaluate Taygen in front of everyone to teach them about neurological diseases.  He was optimistic about Taygen's abilities and said although she will have some struggles with coordination as one side of her brain is damaged (only about 15% of her total brain is affected)- meaning she will have delays with crawling and walking but he sees no reason why she would not be able to walk or talk.  He also predicts that she will have some learning disabilities but otherwise should lead a mostly "normal" life.    We will continue working with physical therapy, occupational therapy, meet with a special needs teacher and hopefully soon a vision therapist weekly.  If anyone has any information on resources that may be beneficial for Taygen please let us know.

Aside from doctor appointments and therapy appointments we are in the process of buying a new house!  Many posts to follow on new home renovations, our dogs (our other 2 children), adorable baby pictures and health updates!