10 Years & Full of Life

Last month, we celebrated Mailyna's 10th birthday!  I really wish I started blogging back when I first got pregnant... it would've been amazing to have all of her previous trials & tribulations documented.  Sigh.  At least I'm (sorta) on it now.  I've been meaning to get back on & do a catch up session, but life is busy & it just doesn't happen the way you plan.  Yesterday we participated in the 4th Annual Thalassemia Conference at Oakland Children's Hospital.  It gave me the bump I needed to fire up my blogger app! While there was a great amount of education and information, the most valuable aspect of the conference was meeting the families that are living with the blood disorder.  Hearing their stories and picking their brains was a huge opportunity.   One of the reasons I started this blog was because there is so little correspondence within the Thal Community, but it hits a decent amount of lives.  Hearing personal stories is so different from a doctor telling me about something they heard about a family & blahblahblah.  The other big point was that families become the absolute experts as they advocate for their children, and while I thought I was informed, I learned A LOT yesterday. 

The myth that foods high in iron should be avoided was clarified. The amount of iron consumed & stored is significantly low from food. Majority of the iron overload comes from the blood transfusions, NOT food! Combined with natural chelators, such as black tea, a occasional steak or spinach is perfectly fine! Also, when eating foods high in iron, avoid consuming anything rich in vitamin C. Extra tip for those that NEED iron, eat your steak & beans with some bell peppers & kale :)

There was someone who personally experienced stomach issues due to taking Exjade; a family that has 2 childen that were born with Beta Thal Major and BOTH of those amazing children went through the process of bone marrow transplants and have BEATEN it.  My heart goes out to them and I commend their persistence and knowledge! We also met a resilient young lady that showed so much determination to live her life on her own terms, not the diseases. It was seriously so inspiring!

I have renewed faith that this isn't it. My heart is full of hope that we can use a non-related match for a bone marrow transplant to rid our lives of beta thal major! I still have to speak with her main physicians to pick their brains, but the other part of me wants everyone I know to get tested this very second to see if you're an HLA match! Pretty crazy huh?! So when that moment comes, believe me when. I say I'll be organizing a HUGE drive :)

Mailyna's main advocate,
Mia

Cooley's Anemia Care Walk 2012 - SUCCESS!!

Team Mailyna banner courtesy of my dad :)

Her busted little hand, still smiling!

If you're from the Bay Area, you know that the weather lately has be absolutely gorgeous!  Its lasted about a week of so & luckily, the Care Walk fell perfectly into that!  It has definitely been a hectic few days, but we always make it work!

The day before the Care Walk, Mailyna & I were actually in a Kaiser ER, after she sliced her hand on the fence.  It's a ridiculous story that I'll skip, but gladly, she didn't need stitches or a tetanus, they just wrapped it up after giving it a nice cleaning.  That girl I tell ya!!

So bright & early Sunday morning, I planned on running over to the San Leandro Marina to scope out a spot & wait for everyone else.  Plans rarely every go through perfectly & this one surely gave me a mini panic attack.  I guess I didn't do my research & just figured a walk around the Marina wouldn't be THAT big of a deal... boy was I wrong!  At 845am, the Marina was PACKED!!  There was people everyone, no parking & a 5K set up that day as well.  I had my girls with me, parking was ridiculous & couldn't wander around looking for somewhere to set up... thankfully, my soon to be brother in law was also there to lend a hand!  He was literally a life saver!  We snagged a prime location, 2 tables & everything slowly fell into place.

Enjoying the amazing weather, supporting Cooleys Anemia

The kids got the jump on us adults!

Walk it out!

We started our walk at about noon with 17 adults & 8 kids!  Everyone made it around at least once, which was the equivalent of a mile.  Many of the kids dropped off at the 2nd go around just because it was such a great day & they were anxious to place or hang out by the water... but they were doing so much running around that I know they took more than the 3 miles the rest of us did!

Notice the "Disney" theme!

Afterwards, we hung out at the park, BBQ'd & enjoyed each others company.  It is such a blessing to have family & friends that support Mailyna.  For them to take the time to show her how much her life means to them is something that honestly chokes me up.  We received texts & messages sending their love our way throughout the day as well.  The other amazing thing was the emails I was receiving as we were there. 

A well deserved rest!

Thank you for your support!

The donations trickled in here & there, and for awhile, I was stuck at a stagnant amount & thought that I set the expectation way too high for donations.  By the end of the afternoon, we had surpassed my goal to reach $1000 for the Cooley's Anemia Foundation!  Thank you ALL for donating!  A lot of people have no idea the struggles Mailyna has because she has no physical indications that she has a medical condition.  Many people forget that her condition is life-long and that there is no cure.  9  years ago, the options were limited... but the advancements that have come along in 9 short years, have made a difference in our lives.  So from the bottom of my heart, thank you for contributing to the future research for Mailyna & the rest of the Beta Thalassemia Community.

Here's a quick screenshot us reaching our goal & a special thanks to everyone who go us there!  The site is still up & we would love for you to visit it if you wanted to, but didn't get the chance to donate.  Any amount, large or small, helps in ways your wouldn't believe. 

 For more pics from the even, please click HERE.

To make additional donations or visit our fundraising site, please click HERE.

One grateful mama,
Mia

Kaiser Complaint Results

The other day, I received a letter (2 months after our horrible experience) with the results of my complaint.  Pretty much a standardized apology, how they strive for positive experiences & all that blah blah blah.  They reviewed the situation & supposedly required some kind of training to avoid situations like this in the future.  I have to say it's basically what I expected... absolutely nothing.  To be honest, the irritation about the situation popped back up after reading it.  The kicker was the last line or so that specifically stated "unable to disclose results".  I'm not sure if thats standard or if that was something they decided to include because I blogged about the situation.  Ohh Kaiser... I'm glad the majority of our time is spent with the Hem/Onc team & not the peds floor at the hospital, otherwise I'd be looking for a new healthcare team.  Who knows how the situation was truly handled, but I'm done with it.  Mailyna is healthy & recovered from the surgery & hopefully we wont have a need to be back in the hospital for anything other than her transfusions.  

Til next time,

Mia

Care Walk 2012 - Sunday May 6th

Hi everyone!  It's been a hectic lately, but things are finally starting to get back to normal!  I'll be having the little miss post later today to give you a feel for her progress since the surgery.  For now, I wanted to see if we can gather up a few supporters/walkers for the Cooleys Anemia Care Walk 2012!  Last year, we had planned on walking, but we found out about it AFTER we already had our family vacations planned & there was no way we could change our flights.  So this year, I'm determined to get a lot MORE people involved!

The Care Walk is great because it is really up to US to decide the factors!  So here it is... We're planning on walking the San Leandro Marina starting at 11am on Sunday, May 6th.  Its a short 3 mile walk/run for the event.  I also thought it would be nice to have a picnic afterwards for all of our hard work!  Potluck of course, anything you would like to share would be amazing!  Please take a look at the link below & join our team!

https://bos.etapestry.com/fundraiser/CooleysAnemiaFoundation/CareWalk2012/team.do?participationRef=592.0.117988510

We'd love to have you pass the word along to anyone else you think would be interested as well.

The other nice thing about this event, is that its all about support.  It doesnt matter if you cant make it to the Marina to walk with us, if you take the time to walk yourself, you're supporting the cause!

Thank you again for your continued love and support for our family!  Please feel free to email me or comment if you have any questions!

-Mia

After the Surgery Thoughts

Hi Everyone!  I wanted to thank everyone for all of the love & support you've shown our family!  Without all of the prayers, well wishes, cards and notes, the day would have been a lot harder to endure.  I wanted to give you all a recount of the day & to let you know about our experience.  For being a long time Kaiser member, I was SHOCKED at the 48 hours we had to deal with.  This was definitely not our first visit or surgery, but if it was, we would never, ever go back.  This is probably the most heavy post yet, so I apologize if it takes up way more time than you anticipated!  

Here is what I thought  was going to happen:

Check in Thursday afternoon after Mailyna gets out of school, get her transfusion, surgery first thing in the morning, home by 5 on Friday (surgery, recovery, traffic etc.)

Now here is what REALLY happened:

Call Wednesday night to confirm what time we should come in, was told to call back Thursday morning & speak with Betty, the Charge Nurse for Thursday.  Call in 9am Thursday & speak with Betty, she said to call back around 3pm to confirm, but we would most likely need to come in around 7.

On my way home from work at 530, I get a call from someone in the Surgery Scheduling Dept & they wanted to know why I hadn't called in to confirm we were being admitted, telling me to come in at 1pm Friday.  Umm, WHAT?!  I spoke with a few different people after that & let them know that we were expected to be admitted in a few hours & that Peds already had a bed waiting.  She got a little flustered & said she would call me back.

I then called the Peds floor again to see if things had changed & started asking a lot of questions.  What time is her actual surgery?  What time are we supposed to be there?  Why does admitting have us down for Friday? WTF is going on?!  I spoke with a nurse that picked up who couldn't give me a single answer & sighed at me in irritation at my many questions.  She passed me along to Betty, who was as rude, condescending & ridiculously unhelpful as I've ever experienced.  I attempted to see why our surgery was scheduled so late in the day & while I understand that younger children take priority because they cant go as long without food, the way she phrased it was unimaginable.  For normal surgery, you aren't able to eat AFTER midnight for something scheduled 1st thing in the morning.  If my daughters surgery isn't until 3pm, what is the latest time she can eat?

Betty:  "She cant eat after 12am.  That's our policy & we do it all the time.  We know what we're doing."

I had so many questions & I could tell she was irritated that I would just take her BS answer & leave her alone.  What was the point of us going in the night before?  Because Mailyna needed her transfusion before the surgery. That I get.

Mia:  "Can anything be done so that we just come in 1st thing in the morning to get her transfusion done & then have her surgery done at the scheduled 3pm time?"

Betty:  "Your doctor said you need to come in, that's what you need to do.  We cant change anything for you."

So we said screw it & headed to the hospital at 730.  At admitting, the lady STILL had no idea why I was there & said I wasn't supposed to be there until 1pm Friday.  I told her to call Peds.  Finally we were brought upstairs & taken to 3 different rooms, all of which were full.  I ended up speaking w/ Melinda, who was more than  helpful & did everything she could to try to figure out the huge disconnect.  They said that the couldn't give me a definite time for her surgery the next day, but said it may be closer to lunch time than the morning.  She was also a lot more reassuring when explaining that they would do what they could to get her squeezed in & even called the surgeon up to speak with me.  Mailyna's dad was coming from San Jose with Mims sister & didnt know what time to come.  Mims pop works graveyard & prob wouldnt get any rest.  My parents were supposed to come by because they had Jassy & wanted to be there before she went in.  Fricken mess.

Enjoying all of her cards!

After grabbing some food, we finally situated in the room.  I felt like that was the perfect time to surprise her with all of the thoughtful cards our family & friends sent over!  An hour later, after Mailyna & I were hanging out, someone finally came in to take vitals right before midnight.  Our nurse Mylene, took us over to get Mims IV started in the treatment room about 12:15.  There, the other lady (I didn't get her name) set her up to get the IV in.  Now I will admit that Mailyna is no walk in the park when it comes to peripheral sticks.  She was anxious & kept pulling her arm whenever she got near or touched her arm.  The lovely way she choose to sooth my child?

"If you don't calm down, I'm going to send your mommy away"

Wow... That didn't calm Mailyna down & I was ready to shove that needle in her neck for talking to my distraught child.  They finally accessed her & we were back in the room at 12:50am.  That's about the time Mims got back to her last blog & we were down for the count by 130.  Sometime throughout the night, someone came in to wake me up to sign some consent forms for the blood & I fell back asleep hoping things would be better when I woke up.  Wishful thinking.

Making faces while she took her meds

We were waken up at 630 for Mailyna to take her meds & she was less than thrilled to wake up.  Luckily, her dad & sister Malia had shown up, so she was not as  upset at the thought of staying awake.  Shortly after she finished her medicine, our nurse Mylene came in & explained that there had been a problem at the blood bank & Mailyna still had not received her blood.  You can only imagine what happened next.  Anger, frustration and disbelief mixed in with hunger & lack of sleep turned me once again into the mama bear from hell.  Mylene reassured me that they would still be done on time in case Dr Chong could fit her in.  The blood started around 715am... which totally negated us coming in the night before.

Our second nurse Katie was amazing at helping distract Mailyna.  She came up with a game & drew out boxes in increments that corresponded with 30 min tv shows.  Basically how many shows she would watch before her scheduled surgery time.  12 boxes.  That's right, 6 hours.  I was also able to have a conversation with me regarding the situation we were dealing with & attempted to sympathize with me.  In fact, she also confirmed who I spoke with the night before & that it wasn't the first time that the lovely manager of the Peds unit, Betty, was a total bitch.  From what I gather, she is a "seasoned nurse" who is set in her ways & is used to telling people something & having them follow her lead mindlessly.  But that's just MY opinion.  Katie was great & I commend her for taking that time with a crazy mom.

Her sad little face right before she went into surgery

Time passed & she started expressing hunger around 10am & I started to get more irritated by the minute.  Luckily she fell asleep & wasn't constantly thinking of food.  Right before noon, our 2nd nurse had come in & told us that the OR called up & would be taking her down right then for surgery.  As we were trying to get into the elevator to go down to the OR & the attendant that was bringing her down & the other 2 people let it close without us in there... so basically they took my anxious child without us.  Luckily one of the doctors we are familiar with saw it happen & took us down immediately because surprise surprise, we didn't have access to the floor.  Seriously.  We left her side around 1230-1245pm & went to wait in the cafeteria.  After a quick bite, I sat in the lobby & found the rest of my family.  By 141pm, I received the call that she was out & to meet them in recovery.

I want to say that the surgery time itself was quick & before I knew it, I got the call to meet them in recovery.  It took her some time to wake up & she was completely freaked out.  The anxiety of coming out of anesthesia was horrible.  The nurse, as sweet as she was, didn't recognize that Mailyna was more distraught than in pain, and gave her two doses of morphine within 3 minutes.  Luckily another doctor wandering the area came over & realized that the cry she had wasn't so much pain, but more anxiety.  We've encountered that before, where Mailyna (and kids in general) come out of anesthesia & are inconsolable & just cry uncontrollably.  Thank God for this guy, within minutes, she was calmed down & falling asleep.

After surgery, trying to come out of anesthesia

We were taken back up to Peds 240 & brought back to the room (which I honestly dreaded, I even asked if we had to go back up at all, or if we could just be discharged from the recovery room).  Back at the room, they didn't have the bed ready & we had to wait a few minutes to get her back & situated. While we were standing at the front door, with all of our family, Mims was nauseous from moving around & ended up throwing up the water.  While I was tending to her, what I didn't see was two women who worked there sitting nearby, basically talking about all of us.  Motioning towards us, rolling their eyes & having a private conversation about our family.  It wasn't brought to my attention until after I was finished settling Mailyna into the room & getting her comfortable.  After a few hours of letting Mailyna get settled, we were able to leave a little before 5pm.  The discharge was quick & we blew that popsicle stand as quick as we could.

2 pushes of morphine later

The whole situation that we endured was ridiculous.  There was a complete lack of communication from almost everyone that worked there.  As a long time patient, previous employee & parent, I'm appalled at lack of bedside manner, communication, compassion & professionalism that Kaiser has provided.  I'm not a parent that will just take what someone says & mindlessly follow.  I do my research, ask questions & follow up to make sure that everything we are doing is efficient and in the best interest of my child.  Our family has been with the Kaiser Hem/Onc since before she was even born, and I absolutely adore them.  If this was my very first encounter, I would've run for the hills.  

Fentons for the win!

I plan on filing a formal complaint for the situation.  I believe the quality of care we received was far beyond poor.  For a pediatric environment, it was horrid.  I felt as though my daughters needs were not met & were not taken into consideration without my persistence.  We seemed to be an inconvenience to a few people & that definitively needs to be addressed.  My choice to share this experience for basically the world to see, is in hopes that other parents will push back when they feel they are being slighted & have the courage to stand up for themselves & be that advocate that their children need.  Unfortunately my relationship & need for hospital care will not end here, but I do have high hopes that this will be the last time we have an experience THIS BAD.  The thing that irritates me more, I feel like they were making more about us being stuffed into a 3 bed room in the middle, than all of the other little factors.  Like we were entitled princesses that wasn't getting their way.  Seriously.

On a brighter note, after leaving the hospital, we strolled over to Fentons to treat ourselves to some deliciousness!  It completely brightened her day!  A huge thank you to my family for standing by, supporting & praying for us!

Please feel free to share, re-post, re-tweet to make people aware!

One tired mama,  Mia

Here at the hospital

Mailyna the night before: Right know I'm at the hospital getting ready for my transfution and my surgery. Before we got settled my mom had to yell at the nurses. She had to yell at them because they weren't giving me a good room. After that everybody had to wate in the family room. After that my mom went into the room to talk to the nurses. Then, after that all of us went to get some food at Church's Chicken. 12:10am Just now I got poked on my wrist. It really hurts whenever someone touches it. While they where looking for a vain on my arm,I was moving around and trying to get away from them! My mom was trying to keep me from moving around and keeping me from kicking or anything else. When they poke you ther isn't any needle inside of the tube. I had all kinds of tears all over the place. After they poked me I cryed a lot. After that I realized that my nurse wasn't that nice! I'm sad and mad. I'm sad because my wrist hurts. My wrist hurts because the tube is in my skin. Also I'm mad because the nurses were mean! They were mean because I wasn't listening to theme. I wasn't listening because I was sad and nervouse.

Less than Normal

Long time no blog!  Its been pretty hectic lately in our lives.  I've been busy with the girls & family time ... really trying to make the most out of the time that we're all home & together.  It just hit me this morning that Mailyna's surgery is only a few hours away...  What makes me feel horrible is that I'm not panicking out of control like I did the first time.  It makes me feel like I'm a bad parent for not constantly dwelling on her condition & all of the factors surrounding it.  A part of me is in denial until they wheel her away... the other part of me is so "matter of fact" because I know its what we have to do & there is no way around it.  I know tomorrow, I'll probably be a hot mess once she goes in.  But anytime Mailyna looks into my eyes, all she needs to see is trust & strength to know that I'm there & that I have complete faith that shes safe in the doctors hands.

I've had a few people get super panicked & filled w/ concern when I tell them, and I completely understand the reaction.  That's the normal reaction.  They aren't living our life.  They don't know the back story, or the complications we've faced... so its hard to relate.  If anything, all Mailyna needs is a little comfort.

The other day, I asked if anyone wanted to send over a little card for Mims, to give her some encouragement.  Its pretty amazing, at any age, to have someone wish you well & brighten your day when you're feeling scared or helpless.  Our lives are so hectic & complicated, and slowing down is the last thing you want to do... but finding that time & the goodness in someone elses heart when they take that time to sit down & literally make a child smile, that is something that makes my heart soar.  It seriously brings me to tears when her sad little face lights up from the love & support our family & friends provide.

I originally wanted to have her blog tonight after we get to the hospital, but I might do something a little bit different.  It depends on how she's feeling, how my internet connection is & how much power I have with my laptop.  Either way, you can expect to hear from us later today.  Thank you again to everyone in our lives.  Without your support, days like tomorrow would be a lot harder to face.

xo, Mia

Surgery Thoughts from Mailyna

Mailyna & her sis Jassy @ the San Leandro Marina

Well, as you can tell, Mailyna never went back in to recount that last transfusion.  I'm 100% sure she just didn't want to re-live it, and I'm ok with that.  We finally got the logistics out of the way & have her surgery set up for March 9th, roughly a month away.  After much talk with Mailyna & my family, we've decided to not just remove her port, but to replace it.  Its a complete heart breaker because I was excited for her to not have to worry about all of those added concerns that come with the port in her teens.  But when it comes down to it, her little veins probably wouldn't fair well with the beating a transfusion every 3 weeks would give it.

Mailyna on her 1st birthday

Thinking back to the day she originally had the surgery to put in the port is a real tearjerker.  Mailyna wasn't even one when we made the decision.  I was devastated that we scheduled it a few days before her 1st birthday.  I remember vividly this little tiny angel wobbling around on her 1st birthday at the park with a dressing on her chest that I watched like a hawk.  I remember the morning of the surgery when they gave her the sleepy gas & her loopy little smile as I took her honu earrings off... She has had a ton of procedures done, many of which she needed to be put to sleep for, yet each time, I feel the tears well up in my eyes & that lump in my throat.  I try my hardest every day to stay strong & tough so Mailyna knows shes taken care of & that she doesn't have to worry, yet for those few hours, I'm completely vulnerable & know its all in Gods hands.

Each procedure gets both easier & harder, for the same reason.  Mailyna is getting bigger & understands she needs to have procedures done, but questions it more & more.  I gave her a chance to blog a bit about her thoughts about the upcoming port replacement & from the looks of it, shes got a great understanding of the importance of the surgery.  I know shes actually a little relieved to have it done since the port gave us such a horrible time.  Here's her thoughts:

"In March I am going to have a surgery. I am scared about it . I am scared because I think they might do something wrong. I also feel that way because I might wake up in the middle of the operation. I have had this port ever  since I was little. I also feel happy about it. I feel that way because once I get my new port the doctors won't have trouble accessing my port. The surgery will take a couple hours. The day before the surgery the nurses and doctors make sure that I don't eat any food. In the night time, before they start the surgery they give you some sleepy medicine. After you take the medicine you start to feel drowsy, then you fall asleep. When you don't know it they begin the surgery. The nurses are very nice. When the surgery is done the doctors tell you that you did great. When they tell you the results you need to sit there for a little bitt longer. Sometimes after you wake up some of your visitors are there to see if you are ok or if you need help with anything. When you wake up you sometimes feel dizzy. You might feel dizzy from the medicine. After the surgery I have to go to a transfusion. I have go to a transfusion so that they can test out my new port. I think that my port will work and cooperate.  I think my port will work and that they don't need to put any more medicine. My port will be all better after the surgery. I think that because I trust the doctors that they will fix my port.

-Mailyna"

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. http://www.thepaintedturtle.org/
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.
Mission 

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

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!

~Mia

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!

~Mia