Monday, October 10, 2011

Sclero, sclahro. Potato, potahto.

* Warning.  Photos in this post are not for the faint of heart*

"You're just going to have to have faith."  Uncommon words coming from a doctor, but that was precisely what our pediatric radiologist said to me.  We are currently taking a pretty aggressive stance against Maaike's cysts in hopes that we are creating a future for her that is filled with words and food.  We decided to move away from the advice of our local doctor and follow the path that the doctors at Children's Hospital in Boston.  Thus far Maaike has undergone two rounds of sclerotherapy, with 10 to 15 more treatments to go.

Sclerotherapy involves injecting large or macro cysts with different agents so that they then collapse on themselves leaving a skin tag of sorts.  Several different injection agents are used, but one of the more common agents, and the one we are using, is chemo.  Because the chemo is injected directly into the cyst and not in her blood stream she will not have the same side effects as a cancer patient, although some sclero patients do experience hair loss in later treatments.

The actual procedure is done under general anesthesia with the injections guided by ultrasound.  First a needle is used to extract fluid from the cyst followed by a second needle that replaces an equal amount of fluid with the chemo drugs.

The big question: Is it working? The Answer: I don't know.

Immediately following the procedure there is no visible difference.  By the next morning swelling sets in as a natural response to the needles themselves.  Next is bruising and hardening of the cysts which can taken weeks or even months to dissipate.  And finally the ultimate collapse of the cyst.  This far we haven't made it to collapse and so we are striving to keep the "faith" as we push on through more therapies.

This photo was taken in the ER on day 3 post her first injections.  She received 8 injections of Bleomycin in her tongue as well as the sclero treatment of 6 surface cysts in her neck.  We had been discharged the night before from the hospital and woke up the next morning to this.  Over night swelling caused her tongue to split on the right side.  We were readmitted to the PICU and then discharged again two days later.
Here is Maaike another week later.  She is such a trooper!  No feeding tubes.  She went to a Pediasure liquid diet for three weeks until the swelling went down and we slowly introduced soft foods.  It took about 6 weeks to get her tongue back to it's normal large size...or maybe slightly smaller.
 In consultation with our radiologist we opted not to treat Maaike's tongue in her second round of sclero.  I wondered if the pain from her neck injections would be more pronounced without all the tongue trauma, but one dose of Tylenol and a good nap later it was as if nothing had ever happened.  We went home that same day.  Now the question is if we will treat her tongue again or not.

So why would we ever put Maaike or ourselves through all this?  The answer: Hope.  Hope that this will provide her with the best chance at the best life that she could possibly have.  Hope for a life full of words and food.  Hope for a life without a trach.  Hope that one day she will join Trevor Cunningham as one of the kids who made it through the battle with many tales to tell.

Friday, October 7, 2011

Guest blogging

Today I am oh so honored to be guest blogging on This Little Miggy Stayed Home speaking about being a special needs mom and life with our dear Miss Maaike. 

Wednesday, October 5, 2011

To the woman in seat 8C and all "other kids"

On our flight to Boston we were seated next to a business woman.  She was nice enough to let us move from the aisle to the window, but it came up very early in conversation that she didn't have kids.  I took that as the "so please keep your baby in check, I'm not up for it" kind of a statement.  She and Sid talked business while Maaike and I snacked and snoozed.  After a while she started to soften.  She wanted to know about Maaike. What was her story?  Why were we taking her to Boston?  She even shared two of her in-flight purchased sliders with Sid.  She was pleasant, but distant.

Then, without turbulence or warning, she started sobbing.  With only an hour left on our flight she decided to make her move and become unglued.  Through her tears she shared about her younger sister, born with down syndrome.  Her sister died just 5 years ago.  She loved her sister.  She learned so much from her.  But, "don't get me wrong," it was hard.  It was hard to have a sister who needed her parents so much more.  It was hard to not some how feel less loved when you require so much less time.  It was just hard.

Next came her plea.  "Be careful.  Don't forget your other kids."

She was able to regain composure in the telling of the horse her parents bought her.  She knew they loved her.  She still rides horses competitively all thanks to her parents.

"But still it was hard.  Don't forget your other kids."

I will never forget Coy's prayer just after they got back from China.  "...and please bless that Mom and Dad will care for us as much as they do for Maaike."  Indeed, finding the right balance between Maaike's tender health and Coy & Kees' tender feelings is no simple task.  We have tried, but there are days that feel like Sophie's Choice.  Last week we missed Kees' only soccer game because Maaike was in surgery.  Tonight I left Maaike crying hysterically with the nurse so that I could go to Coy's basketball game.  The choices are never easy, but I am learning to and trying to let go of the guilt, because I am doing my very best.
To the woman in seat 8C and all the "other kids": I hope you know you are not loved any less.  You are not less valued because you need less time.  You are not less important because you are healthy. You are loved.  You are valued.  You are so important to us.  I hope you know how special you are.