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!