Catch up

I don't really remember who is signed up to read this blog now that I've made it private.  In fact, I'm not sure if anyone still DOES read it.  Anyway, for those who may be out of touch with our family, here's a catch-up of what's been going on in our lives.  I'll do a bullet point list, and then those who wish to know more detail can read more below.

-- We bought a house!
-- Kate has a swollen lymph node that has been very difficult to diagnose.
-- Nicholas will be starting a new preschool (Little Hands Big Hearts)
-- Lauren and Kate will be starting preschool with Lyn Gangi (our wonderful neighbor)
-- All is going well with Armando and I.  Very little has changed :)

DETAILS (probably more than you want):

-- We bought a house in Woburn!  It's wonderful :)  It's a cute little colonial with 3 bedrooms, finished walk-up attic, and unfinished basement.  We love it.  It was built in 1954 so it has a bit of charm and sturdy construction (like retro tiled walls in both bathrooms and kitchen.... those tiles are IN THERE, no moving those babies).

The previous owners bought it from the people who built it.  They lived there for 15 years and did MANY updates, so it's a really well taken care of house.  We feel like we are buying a well-loved home.  It has a good energy to it (also, good Feng Shui energy).

We're still living in our rental until the end of September while we fix up the new house a little (painting, fixing some rain gutters, sanding and painting the inside of the kitchen cabinets-- I'm not a big fan of old floral contact paper).  We were able to get the house less than we had budgeted (sweet), so we are using that money to add on a master bathroom.  There was a little sunroom that the previous owners finished off of the living room.  Well, the master bedroom had a door leading to the rubber roof of this finished sunroom-- turns out it has a full foundation, and is able to take a second story.  Voila-- new bathroom.

-- Kate has a swollen lymph node on the right side of her neck.  All the kids got sick in June (3 days of fever and congestion/coughing) and then got better.  About a week after that, Kate got a low grade fever which we thought was an ear infection from the congestion she'd had earlier.  Three days of low grade fever and on the fourth day she woke up with a big lump on her neck.  I took her into the doctor's walk-in hours and she was prescribed an antibiotic for what seemed to be an infection (possibly an abscess) from an ear infection.  Well, after a few doses of the antibiotic the fever went away, but nothing really happened to the lump.  We finished the course of antibiotics and were waiting for the swelling to diminish ("it takes time for lymph tissue to drain") when we left for Cousin's Camp at grandma's house.

You can sort of see the lump on the exposed side of her neck here.

By the second week of Grandma's the lump had gotten bigger and harder, so I took her to the holistic doctor that I look forward to seeing every time I go home :)  We fondly call him "Mashed Potatoes"  I was sure that he would tell me that her spleen was malfunctioning or something and give me some magical elixir to set it right.  Because that's how things always go at his office--- you show up with some problem that nobody else seems to be able to do anything about and he fixes it.  It's pretty fantastic!  Well, bubble burst.  He did an ultrasound (yes, he's a real M.D.), and suggested that I go to the hospital in Boston when I returned.  oh great.

We returned home that weekend, and saw the pediatrician first thing to get a referral for the hospital.  She put Kate on another round of antibiotics while we waited for an opening with the Mass General Pediatric Eye, Ear, Nose, and Throat guy.  We went in on the next Monday morning so the Ear and Throat doctor could take a look at her, and after one look he immediately referred us to his higher up, Dr. Hartnick, who was in the operating room that very day, so he could do a biopsy.

At this point, my cool and collected demeanor pretty much vanished.  I had been so chill up until this point because of all the blessings she'd had.  I just had this inner peace that it would all be fine-- she would be fine.  But everyone else was making such a hooplah, that I started freaking out a little. Everyone starts throwing around words like "Lymphoma," "probably benign," "more tumors," "fast growing," and it's amazing how quickly my peace shattered.  Maybe it is something more than just a lump.... what if it IS cancer... what if six months from now Kate is no longer in my life?!  I'm telling you.... I started falling apart.

Kate asleep in Mando's arms right before entering the operating room.

They immediately admitted us to the hospital next door, put us in a room, got everything arranged, and she was in the operating room a few hours later.  They wanted to get it done as quickly as possible because she hadn't eaten since breakfast at 6:30.  The soonest they can operate is 8 hours after eating.  So at 2:30, almost on the dot, she was on the operating table.  She fell asleep in my arms about 30 minutes before they were going to start, so I'm not sure if she even knows what happened.  Because this type of lymphoma (if that's what it is) tends to cause tumors in other places, and because she'd been having problems breathing at night, they wanted to do a chest x-ray to make sure there was nothing in the chest to cause problems with the anesthesia.  Which they arranged to do while she was sleeping, right there on the operating table.  It was all a very smooth operation-- no pun intended.

Everything went well with the operation and Dr. Hartnick came to see us afterward to let us know his opinion--- that it looked like an infection, not cancer.  whew.  The frozen cells showed very few lymph cells and a whole lot of granulomas.  So the cells would be sent for cultures which, unfortunately, take a long time to grow.  Kate and I spent the night in the hospital for observations.  It was kind of awesome, actually.  I got more sleep than I probably would have otherwise :)

Kate wore this get up all around the different doctor's offices and hospital wings we visited.   Everyone got a real kick out of her teetering down the halls on her little ruby, high-heeled shoes, carrying her purple purse (one of my old ones) which contains her little white dog.  

When we went in a few days later to have Dr. Hartnick look at the wound, he referred us to the infectious disease specialist, Dr. Pasternack.  Why infectious disease you ask?  Well, let me enlighten you.  The fact that only ONE lymph node is swollen says that it's not a "common" infection.  The "uncommon" infections are caused by mycobacterium.  There is an a-typical mycobacterium that they call MAI (Mycobacterium Avium Intracellulare) which travels through soil/animals/water.  The human form of mycobacterium is actually tuberculosis.  So according to the doctors, she either has a weird soil infection or TB.  

Dr. Pasternack tells me that both cases are actually more common than you might believe.  Kate seems to be in good spirits, nothing has grown or changed much since before the biopsy.  The cultures that they are growing take at least six weeks to show anything (maybe 8), and they've been growing for about 2-3 weeks at this point.  There is a blood test to show if she has TB, but it's not recommended for children under age 10.  So he gives her a TB skin test.  They put a little something just under the skin and see if she reacts in 48 hours.  Dr. Pasternack is heading out of town on vacation for two weeks, and said I'd be fine to wait and talk to him when he gets back about treatments, etc.  

Well, we took Kate into our normal pediatrician to have the test read.  It's...inconclusive.  It's probably positive, but might be just a false reaction.  sigh.  Meanwhile, the Dr. covering for Pasternack decides to treat it as positive and asks that our whole family get a TB test.  So I take all three kids back into the doctor for another TB test and I get one too.  (All negative, by the way).

About two days later, the Dr. covering for Pasternack calls and says he's read through the file and wants to set up a few more tests to pin down a diagnosis.  So I take Kate into the hospital (AGAIN-- keep in mind, I have to find childcare for the other two, drive all the way into Boston, park, walk to the hospital, etc. etc. etc. every time I go to these appointments).  They do another chest x-ray, two blood tests, an EKG (I still don't know WHY), and a urine culture... oh and a skin culture, I think.  Loooong. Day.

The next day he calls again and asks me to come back in for a CT scan.  Apparently the chest x-ray was...inconclusive.  It may be nothing, but they saw something that might be something.  ?!  We said no.  They have done SO many tests, surely one of them might tell us something more.  No more tests.  

I had an appointment with Dr. Pasternack that Friday, and he concurred.  He looked at the x-ray, called the head of pediatric radiology to look at it, and both said that a CT scan probably wouldn't tell them anything more.  THANK YOU!  

I asked about all the other tests they did, and apparently ALL of them were inconclusive.  The blood test (which is the one not recommended for small kids) was contaminated and couldn't get results.  The urine and skin cultures are still growing (just like the cells), the EKG I still have no idea what that was for and what it told them, and the x-ray showed no signs of active TB (except for the 1/18th of an inch spot that might have been a deflated baggie thing--can't remember the name).  

So ALL of that and still no answers.  Dr. Pasternack recommended starting treatment for BOTH and then reassessing when the cultures come back.  Sigh.  So she's now on two drugs for MAI, and two for TB.  We still don't know which it is (or if it's either).  

It took almost a week to get the prescriptions filled because they had to be called in to a special compounding pharmacy or ordered.  Then the power went out in Arlington and the pharmacy couldn't fill the order.  It's been weird.  It feels like just one thing after another.  You know how sometimes things happen and you say, "It just all fell into place!"  Well, this is the exact opposite.  Nothing is falling into place.  

We are following this treatment plan because we can't think of anything else to do.  We're doing Rife treatments at home, but haven't been as diligent as we could have been because we keep falling asleep before we can get it set up.

Anyway.  That's that.

--- Nicholas is starting at a preschool called Little Hands Big Hearts in Woburn.  It's quite literally just down the road from our new house, and it's been highly recommended for years by friends.  I was actually thinking of sending him there these past two years, but other things came up.  Apparently the girls can go there too even though they are younger than the 2.9 years required age.  With parental consent, they accept younger siblings and give a 10% discount :)  Sweet!  

However, we already committed the girls to one day a week at our neighbor's house, Lyn.  She's WONDERFUL. the girls already know and love her.  She taught Nicholas when he was still 2 and the girls were born.  She's about five houses down from our rental house (the one we're moving out of).  I'm excited for the girls to go with her, but have to admit it won't be quite as convenient as it was with Nicholas now that we're moving.  

Also, because Kate might have TB, Lyn asked that she not come until the cultures come back (out of courtesy to the other kids/families she teaches).  I understand, even though I've been assured that she's not contagious even if she DOES have TB.  So the girls won't be starting preschool until October at the earliest, I think.

--- Armando is still working at ThermoFisher, and he still enjoys it.  All is going well.
I am still teaching yoga once a week (alternating weeks in Tewksbury and Belmont) and "assisting" an acroyoga class once a week in Woburn.  All is going well.  I'm only a few hours away from completing my certification.  On that note, my yoga blog (required for my certification) is "Secrets of a Yogi Mama."  If anyone wants to check it out (don't expect too much excitement) 

That's all.  done :)