Sunday, January 22, 2012

Positivity & Looking Forward to Something

After the craziness of Friday, it was a breath of fresh air to get a large piece of mail yesterday, from The Painted Turtle.  If you dont recall, Mailyna went away to camp last year at The Painted Turtle in SoCal last summer.  It was her very first time that she was away, without family.  Heres a little bit about the program:

"The Painted Turtle is a year-round nonprofit camp for children with serious medical conditions and a member of the Association of Hole in the Wall Camps. All campers and their families attend camp free of charge.
Company Overview
The Painted Turtle is a nonprofit year-round camp for children with serious medical conditions and a member of the Association of Hole in the Wall Camps. All families and campers attend camp programs free of charge.
The Painted Turtle seeks to reach beyond illness, to inspire children with serious medical conditions to become their greater selves. Our mission is to provide a year-round life-changing environment for these children and their families-- one that allows children to participate in an authentic camp experience by supporting their medical needs and offers their families care, education, and respite."

I know I mentioned the camp in a previous post (here) & I am more than thrilled that they invited us to apply again this year!  The timing of us receiving the application was perfect.  I know that Mailyna was feeling super run down because of Friday & this completely lifted her spirits at the thought of attending camp again!  I gave her the "we'll see" since we actually have to apply for the camp since its a free program.

It's absolutely amazing what the camp does for the children.  Each session is broken up by illness & Mailyna came home with stories, memories & new friends from those 5 days at Lake Hughes.  She was afraid to meet new friends, but did seem to take comfort in knowing that they were all "like her".  Honestly, its a blessing that there are programs out there that reach out to children & families with illnesses.  Sure, Mailyna has gone camping countless times, but going to a camp is so different.  Thankfully the time frame is a lot more accommodating this year.  Last year, I remember it was a pain getting here there on a Thursday morning & picking up on a Tuesday... So I was excited to see that it starts on a Monday & ends on the weekend!  Its not like its a quick drop off up the street, Lake Hughes is a 5 hour drive away!  As my sister, the drive was craaaazy!  Here's to another SoCal trip... Disneyland for the 5th time in 2 years maybe?

xo, Mailyna's Mama

Friday, January 20, 2012

Transfusion Day 1/20/12

Today is transfusion day. We started at 720 at the lab. With nearly no one in there, you'd think it would be easy breezy, but that's never the case. Apparently Mailyna had multiple labs that needed to be done & the receptionist struggled with trying to figure out which ones were actually needed. Come to find out, she needed all 15. That's right. 15 test tubes to be filled with blood.  The tech counted out the vials 5 times to be sure. We didn't get out of there til 805.

Sigh... So I started to blog when we got to Kaiser with the intent on documenting the day &  letting Mailyna give her thoughts a chance to process all day...however it wasn't an easy day at all...  Like I said, the bazillion test tubes was the first thing.  When we checked in & got her port accessed, they weren't able to draw the blood out, but it still pushed the saline regularly.  She did have a slight discomfort, so we hooked her up to the IV to see how she felt about the flow at the regular rate the blood would flow.  It seemed ok, so we waited on the blood.  As soon as they hooked her up, I could tell she wasn't comfy.  A few minutes in, distraction tactics weren't working & I could see she was feeling more than just a little pain.  By the time I grabbed someone, she looked like she was about to cry.  The nurses decided to do a peripheral stick & try for her right hand.  She was completely distraught that they were going to poke her for a 3rd time today.  She fought furiously & screamed like crazy, but the got it in & switched the line.  Still in tears, she insisted it was still hurting & when they checked it. The line that started out smooth, was now getting hard & puffy...  Which basically meant she needed a different site to be poked, yet again.

By this time, you could only imagine how angry & frustrated Mailyna had become.  She didn't want any of the lines removed, she didn't want to be poked again, she just wanted to go home.  Tears were endless.  I felt like I was in an episode of Greys Anatomy & was trying everything possible to calm her down. Talk down a distraught 9 year old?  Riiiiight.  Finally, they were able to get a good, clean site that was smooth flowing.
The staff at our Kaiser Pedi Hem/Onc are amazing.  Imagine the pressure they're under having a screaming child & a stressed parent, watching their every move.  I'm sure they're great with everyone, but I like to think they give us special treatment.  A lot of the staff have been there with me from the beginning & I appreciate & respect all of them.  Days like today aren't easy for any of us.  The staff are part of our family & I know they want what is best for Mailyna at all times.  They all felt horrible when she refused to talk or look at anyone after the 4th stick.  In fact, a lovely beading set found its way into our room as a nice little bribe for a smile!

What I expect to be an easy day of appointments just like the rest turned into a nightmare. What it comes down to, is that her port is no longer working.  We've had issues with it the last 3 transfusions, but today was the worst so far.  We had the port put in right before her 1st birthday, which would mean this sucker has lasted well beyond the expectancy.  I remember they originally said it would last roughly 3-5 years... its been almost 9.  We've been fortunate that she's had that option, because today, with the struggle to access her, brought back memories from that first year of her life where we had to hold down our little perfect baby while nurses & doctors poked her endlessly.

At this point, we have 2 options.  The first is remove her existing port & replace it with a new one.  We'd still have to worry about her playing any "contact" sports or activities, fevers over 101.5, risk of infections & all that good stuff I've had to be cautious about for the past 9 years.  Option 2 is to remove the port & finally let go of all those limitations, but all of her transfusions would be done through peripheral sticks.  The downside is the veins will take a beating & she may eventually need a port put in anyway.  Its a decision that she gets a say in & it matters a lot that she gets that chance to decide.

We ended up missing 2 appointments, but luckily all of the doctors work so closely, they fit us in at the end of the day.  We didn't leave Kaiser Oakland until 430.  That's right, 720-430.   Regardless, my child is a  super trooper.  She ended the day with a smile, sassy as ever .  Stay on the look-out for a recount of today by the lil miss herself!

Thank you again to all of my family & friends that have reached out & left comments & sent up prayers for us.  It was hard to keep it together, but the strength & support you've shared has helped both of us make it through this rough patch!


Thursday, January 12, 2012

The Mind of a 9 Year Old

Hi everyone!  I asked Mailyna to blog about a tough topic for her.  I asked her to write about how she thought other people felt about her beta thal or how they would react to finding out.  She didnt write much this time because her mind was jumping from topic to topic, but what she came up with is below. 

"I have a condition called Beta Thalassemia. Sometimes its hard to tell other people about my condition. Sometimes I think that other people might think of me differently then other kids. I think my friends wouldn't be my friends if I told them about my Beta Thalassemia. Sometimes when I think of that I cry, but then I think of happy things. Just like when I went to Knott's Berry Farm in L.A. with my dad and my sister. Also when I'm sad I look at my favorite pictures I took before when I was little like my baby sister who is 3 years old. To me I think that with my Beta Thalassemia I can't do so much things like soccer, karate, football, and volleyball."  
- Mailyna

The heartbreaking thing is that we try to keep her activities as normal as possible & but there are limitations.  She has a port-o-cath in her chest that does need to be protected, because its connected to one of her main arteries.  I've never tried to hide her blood disorder from anyone & freely open up about her condition to anyone who inquires because its something that is a part of her life & ours.  Everyone that we've ever spoken to has been supportive & loving, which is a complete blessing!

Shes a strong kid & deep down shes got all these insecurities.  And to be honest, the odds are stacked.  She's a 9 yr old girl, that has divorced parents, and has a genetic disorder.  Every aspect adds separate difficulties.  She isn't the average kid... she's better!  She has at least 4 different Christmases to look forward to... 2 sets of parents, 4 grandparents, a gazillion other family members to cheer her on in whatever she does!  Life is full of ups & downs, but Mailyna is truly blessed to have the support system she does & to be living in a time and place where she is able to receive the proper care to manage & maintain her life. 

Lets give her some reassurance & encouragement folks!  Please feel free to subscribe to her blog & leave tons of comments!  Thank you again for the support!