Time flies!!!

Oh my, time sure does fly.  Summer is half over. 
I used to dread summer. . . the lack of structure created chaos for Marriela.  Our school district only does half day summer school and only for 6 of the 10 weeks off.  This created many issues and behavioral issues to contend with. 

Not this summer.  They are ALL doing great!  This summer has been relatively relaxing related to the kids.  My courses created unwanted stress, but they're over now.  We had an awesome trip out to Lake George and many trips to the local public pool. 

So today's blog is centered on the hour at hand.

Quotes from Marriela in the past 10 minutes:
"I'll send you cards when you die."
"When brown babies are born they turn peach when you turn the light on."
"When I grow up I'll treat you all to Ramen Noodles."
"Bo (our dog) go, go, go, you bother me... you can stay and watch me eat, it's ok."
"You'll live for a long long time, I won't let you die too soon."
"You had an awesome pregnant belly, good thing you stayed fat."
"You have old lady legs."
"I'll always be your baby."
"You can come live with me and my husband Tray, he'll give you lots of money and take you to the store." 

As you can see, there is never a shortage of things to "talk" about here. 

Joshua just got home from his program.  Unfortunately he had some seizures while out and this morning he had a big one that resulted him hurting his back on the bathroom sink.  I'll call neurology on Monday to see what else we can add. 

Cody had Jui- Jitsu this morning and did great.  He is so good at it! 

Tray went for a jog/walk today because he was "bored".  I'm not sure how much he actually jogs but that's ok.  I was proud of him for going at all!

Now we're all preparing to go Garage Saleing!!  WE LOVE Garage Sales!  :-) 

Enjoy your summer and I'll be back soon!

Love,
Renee


 

Overdue. . . like many of my children's library books!!

Well, the end of a school year is closing in.  End of the year activities are piling up.  Field trips, Mother/Son kickball games, Talent Show, Concerts, Special Olympics and state tests (many know that I am a vehemently against these tests and exempted my children from participating in them. . . another post for another time).   

We had, several significant ups and downs with Marriela this year in school, but she finished it out with an amazing ending.  She sang at her concert last night, as she always does, with such a love and gusto for music.  Several people stopped me on the way out to the car to say how much they love watching my daughter sing at these concerts.  She sways to the music throughout the entire concert, she engages in all hand gestures with great enthusiasm and her voice can be heard above all others (even with 3 grade levels on the stage at one time).  Today I filled out the form for the Talent Show.  She is singing again.  Last year it was the song by Hannah Montana, The Climb. . . I'll share it again someday.  It was incredible. This year she is signing an Olivia Holts (another Disney star) Had Me @ Hello.  It will once again be awesome no doubt. 

Joshua has been accepted into a new program that will provide community habilitation activities 4 days a week.  He is a bit skeptical and overwhelmed at the prospect of having to "go somewhere" 4 - 5 days a week!  We've told him this is the process for growing up and he needs to go out and do things beyond the front door of our house.  This is such a blessing, as we've never been able to allow Joshua to participate in any activities, as he requires a 1:1 adult with him at all times and has medications that need to be administered around the clock.  This program is just short enough to fit in between med times and provides a full time 1:1 person with him to engage and participate in fun activities out in the community with other youngsters much like himself. 

Tray has joined the Liverpool Modified Track Team.  He is doing the discus and shotput.  His endurance has improved 10 fold and though he may not be the fastest, he is successfully completing the entire 3 laps around the track with the other kids!  This is going from having virtually no endurance and almost passing out just walking an 1/8 of a mile this past winter.  Trayvon has also started some ADD medication and his grades have finally started to reflect his true abilities.  He went from a 54 in math to a 79!  This is a truly amazing transformation and I think there is even more room for improvement because he's much better at "staying on track" in the class, but his organization is severely lacking. . . therefore, we're going to work heavily on that this summer as well as writing skills and learning Spanish with some discs I bought.  His new heart is doing fantastic and despite continued elevated pressures, this just appears to be his norm and we'll need to just follow him a bit closer for issues. But he has had no episodes of rejection and has successfully weaned to the maintenance levels of is anti-rejection medications.  It's truly amazing to see pictures of him pre-transplant to now. . . what a difference!

Cody earned another stripe in Jui-Jitsu last night.  He is a natural and is "taking down" kids with 30-40 pounds on him.  He's a skinny little thing, but he is highly flexible and long, making him perfect for this sport.  He is going for his next belt on the 7th of June. . . Go Cody!!  Cody has also successfully worked incredibly hard this year on his writing and no long has a 504 plan in place to receive OT.  He has been getting OT since he was 18 months old and he's now 7 1/2 years.  That's wonderful.  He has also been an incredibly hard worker in his reading group (Cody has been in an RIT reading group since kindergarten) and is only 6 months behind his classmates.  He is now on grade level, and with some tutoring we're getting him this summer. . . should be on par with this peers in September.  Can you feel how proud I am?  This was my baby who wasn't suppose to have any issues and when it was clear we were having some in both reading and fine motor, I was heartbroken and totally frustrated.  I am now confident that much of it is him being a boy, highly imaginative, non-stop moving, and young for his grade (he turned 5 just as he started kindergarten).  So my little guy is going to the third grade doing better than ever before.  We are watching his writing skills closely as there continues to be some significant concerns about his "ability" to put thoughts into words vs. making the letters right.  So next year he'll get assessed throughout the year to see if he needs modifications or intervention in that area.  Otherwise, doing wonderful.

Sergio is moving up to first grade.   I had an epiphany the other night that he had not been in the hospital for his entire 6th year of life!  However, he started his 7th off with a bang. .. He had started running fevers on a Friday a few weeks ago so I took him right in to have blood work and check up done.  His ears were severely infected, phew, that was easy.  Started the oral antibiotics and some steroids for a bad asthma flare.  But he spiked a high temp that afternoon so the pediatrician decided we should do a shot of Rocephin as well to get the infection under control.  Pushed the med (he's had it dozens of times) and watched him break out in hives from head to toe.  So, now we have to push some Benadryl as well.  Oh, did I mention this was while Peter was out of town at his brothers in Florida.. . oh yeah.  It's now 4:45pm and I have to pick Trayvon up at 5:15 from track practice and I have Cody, Sergio (covered in hives), Marriela and Joshua all with me (each begging for a different "treat" for being good - since when have we started rewarding their good behavior with treats?  Oh yeah, like Forever Ago!  LOL)  I reassured them we'd all get "treats" for being good - yes, I didn't kill anyone so I deserved one too cause I was good.  Once Sergio was looking "better" from the Hives side of things, I bolted and was only 3 minutes late getting Tray.  This story is complicated by the fact Nettie is having some major issues with her knee (see story below).  Sooooooo, all is well UNTIL, 4:30 am on Sunday, and the pediatrician calls to tell me Sergio's blood cultures are growing yeast. . . Really??  So I assured her this was not an emergency - with that said- anyone else reading this if your son or daughter's blood cultures do grow yeast it most certainly IS an emergency for you!!  So don't do as I do, do as I say. . . go to the ER right away.  Did you see I rhymed that for you?? Anyways, I promised that if he looked any sicker I'd bring him right in.  In the mean time you need to see the story below to fill in the gaps from point A (phone call) to point B (ER trip).  Fast forward, Peter arrives home and he helps me with Nettie.  As he was standing there, he asks "Why is Sergio so sunburnt?"  What???!!!  He's been inside all day, he's not sunburnnnnn.. . oh my, he looked like a cooked lobster.  Took his temp, 103.8.  Off to the ER with his sister and his nurse who had literally just rolled through the door.  So I kissed Peter hello and goodbye in about a 10 minute span and off we went.  Short story, new antifungal on board, Sergio recovers wonderfully, gets to go home on Wednesday.   Mother's Day, I return from the hospital after staying up ALL night taking care of Nettie.  I always go straight back to see Sergio when we have no nurse (which we don't on Sundays until late afternoon) and change his diaper and take his temp and such.  He was happy and in full of it, and had a swollen and very red belly button with a hard lump underneath!  What!  No temp so decide to wait and see what becomes of our belly button issue.  Drew a line around it with a highly permanent marker (as 1 1/2 weeks later the damn stuff is still there) and I take all 5 kids to the bowling alley to a birthday party for one of Cody's classmates.  Peter went to stay with Nettie.  We had a great time and I refused to look under his shirt until we were all done playing and having fun bowling.  I got home and dang it if that red hadn't gone past the line I drew and his poor belly was harder and redder.  So off to the ER again, admitted again, start IV abx..  Discharged on Tuesday after a beautiful response to the meds and continued IV abx at home.  By Friday he was having profound diarrhea and his bottom was bleeding.  We stopped the antibiotic 2 full days short of finishing the round.  He has since recovered from a GI standpoint, but the last two days, he has been running higher than normal temps (100.2).  This is almost always indicative of something.  So as we move into the weekend we worry what this means (especially since we have a family reunion on Sunday!!).  Stay tuned. . .

Sigh, Nettie's story is a long and ugly one.  A simple arthroscopic surgery on her knee to smooth out some annoyingly rough cartilage and meniscus, resulted in a severe infection that lead to 2 more surgeries to wash out the infection, the placement of a PICC line to run IV antibiotics for 6 weeks and an almost month long hospitalization.  The Sunday that Sergio turned into a lobster was the day I was taking Nettie to the ER to have her knee looked at.  I had been watching it closely since Thursday when she started telling me how much it was hurting now, as it hadn't hurt at all following surgery.  I picked her up all day Saturday and she laid on the couch with an ice pack and pain meds on board, but clearly wasn't getting better and I knew as soon as Peter got home, she'd need to be seen.  Never guessing that I'd have to take both kids at the same time and have them admitted to two different parts of the hospital.  Nettie is 23 now and is no longer a pediatric case. It's so hard to have her on adult floors and not have the legal papers to have doctors have to call us instead of talking to her.  That's now one of my top things I need to work on!!  After 2 1/2 long weeks of severe, unrelenting pain, my sweet girl has finally turned the corner in that area and called this morning to say that she needed NO pain meds during the night and she was still pain free this morning.  This will change following her intensive therapies, but that's ok.  The fact that when she's resting her leg is no longer hurting gives my heart peace. I had to have a few maternal breakdowns with the old floor she was on, as well as her new floor.  Papers or no papers, doctors started calling me and giving me the plans of action and her pain was finally being addressed appropriately.  We are looking at her maybe coming home on the 30th.  We'll have to see how well she does between now and then. 

Well, that's it for now.  Peter and I doing a summer semester for 8 weeks.  He has a 3.8 average and I have a 4.0 thus far (in all fairness, Peter's professors grade him harder than mine do).   I had to write my final paper for one of my classes while bouncing from one room to another all day and that made for a very tired and loopy paper, but she said she loved it and gave me an A.  I think she was drinking some wine before reading it, but I'm not complaining at all!!  LOL 

I have another project I'm working on, but I'll do that blog in a few days.

Love to all,
Renee 

 

The Journey Begins. . .

I learned something about 2 weeks after Joshua had his brain tumor resected.  I can't use the word removed, because the truth is, it wasn't all removed.  He still had a golf ball size tumor in his head after a grueling 15 hour surgery where he lost his total blood volume 2.5 times.  He was teetering on the edge for two weeks after that surgery and one night, we really thought our sweet boy was leaving us.  The looks on the faces of staff told us things were going in the wrong direction, and quickly.  I had taped pictures of Joshua's beautiful face on the wall at the end of his bed, to remind everyone that entered his room, that the swollen, shave headed little boy in the bed with the tubes coming out of everywhere was NOT the boy I had brought them.  I reminded them that night that he was to be returned to me in the manner in which I brought him and our wonderful PICU doctor said "I am doing everything in my human power, and calling upon all the other powers that be, to do just that."  Joshua survived.

About two weeks later I walked in the cramped ICU room after taking a brief moment to run to the bathroom.  Peter was talking to someone I had not met yet.  She introduced herself and I sat down.  I tried to listen to what she was saying, but my brain was stuck on something. . . it was stuck on the word, oncologist.  Why did we need an oncologist?  My son had a brain tumor, not cancer.  I really did try to listen and follow what she was saying.  Peter clearly was understanding her and that was even more frustrating.  The words were coming out of her mouth, but they made no sense.  It was like listening to the teacher on Charlie Brown.  Wawawa wawaawwa.  And then, again, I lost sense of who took over my voice. I heard myself asking this woman, who clearly was there for good and not bad, to leave immediately.  I heard myself saying that my son had a brain tumor and once we were out of the hospital he would be fine.  He didn't need her help, the doctors were doing fine here in the ICU.  I knew that what I was saying wasn't right.  I had been caring for my chronically and often critically ill daughter for 3 years, I had the medical knowledge.   I knew that she had information I NEEDED to hear. But, it wasn't time.  It wasn't time to admit this was just the beginning of a fight I had no desire to be in. 

That night Peter and I ordered a pizza with another couple who had a child in the PICU as well.  I went down stairs with this sweet mom to get the pizza.  As we entered the elevator, pizza in hand, a mom and her adolescent son entered with us.  He was bald, gray and shaking hard.  His mom had his pillow in her hand and was rubbing his shoulders, telling him he'd feel better soon.  I looked at that child and saw what we were facing.  I saw the bald head and the gray skin and all of a sudden the shock, terror and overwhelming fear of what was still yet to come hit me all at once.  I knew I was staring at that poor child with disgust on my face and the smell of the pizza must have been just awful for him.  I am still riddled with guilt for that initial encounter I had with this child, whom I eventually came to know well.  As I exited the elevator, three floors below where the mom and son were headed, I cried and left, giving the pizza to my friend, to go and have my personal pity party. 

The next day I faced my demons head on.  I asked my friend to join me as I took a "tour" of the pediatric hematology/oncology floor.  I was surprised at the brightness of the floor.  It was wider than the other pediatric floor.  The rooms were open and inviting.  A small child with no hair came flying out of a doorway and jumped on the base of an IV pole carrying no less than 4 pumps and far more bags of "stuff".  This child was no more than four years old, but clearly was used to this process.  As we walked down the hall, holding each other's hands (she had no preparation for this experience either), I looked into each and every room.  Cancer does not discriminate.  There were cribs for babies and game stations in front of teens.  There were preschoolers in the playroom and school age children sitting in the day room doing crafts.   I left that floor far more prepared than I had ever imagined, because that floor was filled with kids fighting!  They were not lying in bed dying.  I needed that visit, and just a week later we finally made it to our new home on 7H where we were welcomed with open arms.  I also came to terms with the fact that my son had both, a brain tumor and cancer. 

March 4, 1998 A Brave New World

“He’s running funny, don’t you think?” I asked Peter as we were walking down the path along the lake.  “Maybe he needs to get out more, I’ll talk to Peggy (our daycare mother) and have her take him out for more exercise.” 

That was the middle of January, 1998.  Joshua was 28 months old.  Over the course of the next three months odd symptoms occurred here and there.  He had some vomiting after eating chicken nuggets; complaints of mouth pain; tripping without warning; nothing alarming.  Nothing concrete that said. . . uh oh.  Until, March 1, 1998.  That day I was called to his daycare because he had “beaten up” several of the children and then proceeded to fall out of his highchair for no apparent reason.  When I arrived he was crying about his mouth.  I called the dentist and set up an appointment for the next day.  I then called his pediatrician who said to come right in.  We went.  I told him about the day and the fact that we had witnessed him tripping more.  The doctor threw a piece of paper on the floor and asked Joshua to pick it up.  Joshua stood up happily and then staggered to the paper, bent over to pick it up and missed it completely.  I was alarmed.  The doctor remained calm, but stated that if “anything changes at all, call him immediately.”  That was a Friday.  That Saturday I took him to the dentist, nothing presented itself to explain the pain.  We then took the Annette and Joshua to a big play facility where there was a ball pit and lots of tubes and slides.  The kind of place where Joshua should have had a great time, yet he didn’t.  He was subdued and sat in the corner, away from everyone.  Annette was crawling all over and having a wonderful time, yet, her little brother, felt feverish and lethargic.  We came home.  I thought to call the doctor, but chalked it up to a virus.  The next day, Sunday, Joshua woke up wonderful.  He was bright eyed, happy and full of life.  My mother came to visit and we all drove out to see my grandmother.  It was a wonderful day.  That evening, as the kids played and my nephew and Joshua ran through the house, I noted how it was clear Joshua couldn’t make the turns as quick as his cousin.  He was running into the doorways, bouncing off happily, but definitely having judgment issues.  Everyone went to bed without a further thought.  The next was business as usual.  I went to work as a speech therapist in the local city school district.  Peter left for work as well and I dropped Joshua off at daycare while Annette went to school with her nurse.  Mid-morning I called the pediatrician to let him know that after Saturday, all seemed to have worked itself out.  He was not nearly as comforted as I was and asked that I bring Joshua to the urgent care center the next morning at 9:00am for a CT scan and a lumbar puncture.  He was alarmed that Joshua continued to have “ataxia” and the fever was worrisome.  He wanted to rule out viral meningitis.  I hung up the phone in shock.  I had no idea what had just happened.  I called to tell them all was well, and instead, I was told things may be anything but well. 

 

A week after leaving the PICU and his resection.

That night was awful.  Joshua literally cried all night and refused to let us lay him flat.  That morning, for the first time ever, as I was dressing him to meet the pediatrician, my sweet baby said in his tiny shaky voice and tears in his eyes, “my head hurts.”  I called the doctor right away and told him I was taking him to the ER instead.  My heart knew he had meningitis and we had wasted so much time.  I grabbed my mom, threw a small bag in the car and left for the ER. 

We checked in, and then waited.  I watched my sweet boy waddle around clumsily but happily.  He was playing in front of the sliding doors and making them open and close.  We had waited for two hours when I looked at my son and suddenly realized he was no longer able to use his left side.  He was holding his arm to move it and he fell as he tried to make the doors open.  I grabbed him and screamed at the lady behind that lovely piece of thick plastic, that protected her from my motherly rage, and told her that my baby was dying of meningitis as we waited out here!  The doors flew open, everyone was handed a mask and we were ushered immediately to a room, where I was grilled on why I thought my son had meningitis.  I stood him up and asked the doctor to have him walk to her. . . he fell, three times trying.  Then she handed him a coloring book, which he promptly took with his right hand; Joshua was left handed.  She asked me to please wait a moment while she arranged for a scan of his head.  Peter arrived as we were attempting to give Joshua the “sleepy medicine” which tastes vile.  He helped me hold Joshua as I squirted that liquid acid in his mouth.  Joshua yelled for a bit, but his strength was getting weaker and his cry softer.  It took 2 hours for the medicine to actually kick in, so I told Peter to go back to work and that I’d call him if anything was going on.  He walked out after kissing Joshua softly on the head.  15 minutes later I was in the CT room with Joshua sleeping peacefully getting pictures of his beautiful brain.  As they tech was finishing, he asked me “Is he on any meds at all?”  My puzzled look must have been all the answer he needed. 

As we walked back to our room, I could feel the looks of the nurses but didn’t realize what I was feeling.  The doctor walked in immediately after us and sat with my mother and me.  She put up an x-ray like picture on the light box on the wall.  There, was my first glimpse at the horror in my child’s head.  A tumor was taking up all of the right side of his brain, pushing everything into the left side of his head.  The Pediatric Intensive Care team was on their way down. 

 

I walked quietly out into the hallway and stared at the phone.  I had to call Peter and tell him his son had a brain tumor.  I don’t know where the sounds or words came from.  I don’t have any idea what I was saying, but I remember screams and a nurse holding me as I fell to the floor.  I remember being asked if I wanted something to help with the anxiety or if I needed to go outside.  I needed none of those things.  I needed to go back in time three months, to that day I saw my son running funny. . .

 

 

It's been a tough month. . .

The children are fine. . . let me start with that.  Fine, relative to our unique world. 

Two weeks ago, my beautiful nephew by marriage, passed in his sleep.  No answers.  My brother asked me, "Can you die of a broken heart?"  They had just left Peru the night before and he was profoundly sad to leave his grandmother, who he had an incredible bond with.  See, Renzo was 12, but due to severe prematurity, he was wheelchair bound and had the innocence of an infant and a smile that you could not forget.  His grandmother in Peru cared for him for the first 6 years of his life.  He was deeply in love with her.  My brother thinks he just died of a broken heart as he felt the plane leave the ground to head back to the States.  He will be missed beyond words.

One week later, the eldest daughter of one of our Cancer Moms group was killed in a car accident.  She had just turned 18.  This family had already buried their four year old son, who passed from a brain tumor very similar to Joshua's.  They are an incredible family.  Eight children, then seven, now six.  There is a new sister on the way, it should be nine amazing children.  The services were heartbreaking.  Like Renzo, there are no clear answers as to what happened. 

This past week, a sweet girl in Sergio's class, without warning, came close to coding in the classroom due to severe seizures.  She left the PICU today but was very sick for a while.  It happened in the blink of an eye. 

Two days ago, at our local mall, a wonderful mom and her daughter were leaving a gymnastics class at 8:30pm.  They were kidnapped and bound.  The 10 year old daughter was raped.  The mother, was stabbed to death.  This happened just 2 1/2 hours after my 10 year old daughter left that same mall with her respite worker.  I could not catch my breath for hours after I heard all of the horrific details. 

Yesterday was my mother-in-laws birthday.  She passed 5 years ago.  She was more than a mother-in-law to me, she was a mother.  She was an amazing woman who loved me as one of her own.  I miss her immensely.  Happy Birthday Mom. 

Despite these overwhelming tragedies, life goes on.  The kids go to school. Doctors appointments are made and attended.  Tray did an amazing job in his play.  He was incredibly proud to be a part of something so "normal". 

I can't explain why bad things happen.  But, someone asked me how do we change this culture of violence we live in.  I thought about that.  I didn't want to give a brash or off handed response as I started to.  I opted to think it out.  Then, we were posed a similar question in one of my graduate classes relative to the concept of social justice. 

Truth is, there has always been bad stuff happening.  The difference is, now there is a preoccupation with sensationalizing it.  If you make a concerted effort to seek out as many representations of violence as you can find, then people will begin to believe that this is all our country is made up of.  Violent, gun toting criminals.  If you chose, instead, to report every great act of courage or wonderful story of kindness and love, then our country is now made up of caring, loving people.  See, culture is what you hear, see, and live.  Culture is the totality of what makes up a country or subset of people.  To claim we have a "culture of violence" implies that all that we hear, see, feel and live centers around violence, for that is what culture is, the center point at which you identify yourselves.  I dare say, the majority of American's are anti-violence.  In fact, I would go so far as to bet that we could reshape the image of America simply by forcing media to report equally, good with the bad.  To make national headlines out of good stories rather than just horrible events.  To create the ever so popular "level playing field" for all media, as well as rules of play.  People are sheltered from the good of this country, they only see and hear about the bad, because that is currently what the media needs to sell. WE have the ability to change all that. 

So, this was a mish mash of stuff. But in the end, the point of it all is this. . . yes, terrible things happen.  I have just witnessed three personally, but the amazing good that has happened in that same time frame is ever present as well.  We need to focus on what we can do to help vs. what we can't do to help. 

Hugs to all,
Renee

 

There are so many organizations we could support.  Really, I think, split between just my kids we could support as many as 25 organizations.  How do you choose between them?  How do I pick one condition over another?  Each diagnosis for each child is such a life/game changer.

 

I remember when we went to one of our first "Cancer" walks.  Nettie was very interested in it and wanted to know if they had one for AIDS.  I told her they do. . . "Well, then why don't we do that walk?"  That was a breath stealer.  I guess I was worried that people would connect the dots and then Nettie's little secret would be out.  However, no one told her it was a secret.  No one thought she'd ever understand enough to know what her diagnosis meant, let alone garner support for it!  A year later, Nettie began sharing her diagnosis with random people in her life.  Yes, it created chaos for a bit while people were educated and those who really cared about her learned how it really meant absolutely nothing to them and only affected Nettie. . . and at this time, only in the fact she has to take her meds.  She is a beautiful and determined and extremely healthy young woman.  Her major issues are related to the damage the virus did to her brain when they didn't have any treatment for children back in the early 90's.  Her hips, knees and shoulders are all a mess due to the CP and severe stiffness the brain damage inflicted.  But, health wise. . . she beats the rest of us hands down!!  She has done the AIDS walk now for the past 5 years.  This year, we're joining her.  This year, the kids will hear about why we are there, to support Annette. 

 


Joshua has no memory of life before cancer.  He was only 30 months old when the massive tumor taking over his brain was finally found.  He never questioned the process or the tubes or the meds, as he had witnessed Annette with all of the above many times. He assumed it was the same.  The fact that her hair didn't fall out and his did. . . never crossed his mind.  We lived inpatient for 7 months.  We went home exactly 4 times in 7 months and each trip home resulted in a readmission less than 24 hours later due to high fevers.  At the end of 7 months we went home for 3 glorious weeks as he grew stronger to prepare for his stem cell transplant and subsequent radiation.  I find myself drawn to organizations that support Pediatric Cancer, as I see it so much more due to the need to go to the hem/onc clinic.  Plus, the fact that his current medical issues are all a direct result of his cancer treatment, is constant reminder.  The fact that I follow many children on Caringbridge and in real life who are battling cancer.  But we support from the periphery.  I am so busy, that at this time, to do more would be too much.  Add to that, the fact that Joshua never sees himself as a cancer survivor.  So we cheer from the sidelines for those brave enough to shave their heads in the honor of amazing children and those that walk to raise money to find a cure the government clearly has no interest in providing funding too.   

 
Pediatric Mental Health, this probably affects our life more than any other, yet it is sadly the one diagnosis you rarely see any cute little ribbons or posters or facebook tokens supporting this cause.  There are no walks to raise money to help families who's kids are struggling with very real medical issues but are sequestered to the sidelines like it's a type of leprosy.  There is a walk to remember those who died as a result of suicide. . . what if we had a walk to support those BEFORE they see no other alternative in life other than to die.  60% of children with bipolar will attempt to commit suicide.  Their precious brains can't see through the fog of depression and of that 60%,  almost 50% will succeed.  Really????  This is what my baby girl is facing.  This is an area that I would love to garner more support for.  Wave my banner and say let’s get this going.  But, then my little girl will be the poster child for a profoundly broken system that few have any interest in fixing.  Few if any even understand what the mental health (as if it's any different than any other type of health.. . it's all physical/chemical/organic/REAL) system is like. Imagine you have a broken foot, it hurts, and it’s causing you to be highly agitated, irritable, and can't think straight due to the pain.  You go to the hospital, but they're busy and don't have time for broken feet right now.  They put you in a room with a 1:1 aide should you try "attacking" someone to help you or to find meds to help the pain.  You finally get to see a doctor who has never seen you before and without any tests and only a few questions, the diagnosis of "broken toe" is made.  But wait. . . it's a broken FOOT.  It's bigger than a simple toe.  You need a cast but instead they just put a Band-Aid on it, a few pain pills and send you one your way while your parents watch you suffer and it just eats them up inside.  You are sent to school in this pain and are expected to function yet the issue has never been addressed.  That's an example of how our system works.  It's terrible. 

 My son, Trayvon, is coming up on his one year heart transplant anniversary!  It also falls during Congenital Heart Defect week, wonderfully coincidental!  I am blessed to have a good friend who has established a wonderful local support group for families diagnosed with heart defects.  As such, I am able to support the cause by sharing facebook pages and token posters to show both support and spread awareness.  I have never been to an event.  We could easily support the GIFT of LIFE organ donation program.  I just don't have the energy.  I would like to think in my future I will be able to do more for these programs, as they really are invaluable to those families who find themselves facing these new giants in life. 

 

Our youngest's life has been profoundly affected by an undiagnosed mitochondrial defect.  There are some amazing organizations out there helping families facing these complicated and frustrating and life shortening illnesses.  We could support the many organizations that support families with g-tubes or are TPN dependent.  So many possibilities, in just one child.    

We were honored and incredibly humbled by the support from so many other organizations that I wish I had time to do more for.

 
We been on trips from Make A Wish and Starlight Foundation.  We were supported through various charities that help families make ends meet.  We were blessed by incredible friends who put together a benefit for Joshua 15 years ago and another for Tray 2 years ago.  We wish we could do more to promote adoption and disability awareness. We wish there was more awareness and support for Pediatric Epilepsy and the toll it exacts on the child and family.  We commend the many disability related organizations that bring attention to those with Cerebral Palsy and Developmental Disabilities and Autism (all of which we have here and contend with daily).   Elmcrest Children’s Center and Casey’s Place are amazing organizations.  So many.  Please, if YOU have the time, energy, or even the ability to donate money, please do so.  Facebook me, call me, e-mail me, text me.  I’ll point you the way to a wonderful organization that could use your help.  Some are small and still amazing.  Some are huge and though they work great works, the little guys need more. 

 To all those that have supported us and to those who are passionate about an organization, I commend you and support you!!  I’m so happy there are those that do have the time and energy to educate the world. 

Sometimes it hurts to be a parent. . .

Sometimes we don't have the answers.  No wait, it seems lately, more times than not, we don't have the answer.  We know our children pose challenges, all children do, some more so than others, but all children stretch the imagination and parenting skills to the limit.  However, it seems that just when we have a grasp, a firm hold on how we want to proceed in a given direction with a given child. . . they turn direction, or just go into a full reversal and completely jump course all together. 

Marriela is our current course jumper.  She was on a nice roll.  She had many fantastic days in a row.  Now, let me clarify what a great day for Marriela is at school:  She does not hurt herself. She does some work. She spends some time in her classroom with her peers.  She smiles, she laughs and says many funny things.  School work. . . that's optional most days.  Keeping her within a fine system of contentment mixed with productivity, in a very broad sense of the word, is the daily goal. 

For those who haven't read her post on who and what makes Marriela the unique and amazing person she is, I'll paraphrase.  She was the 5th child of a crack addicted mother who had been raped repeatedly by an uncle at 9 years old.  Her mom was addicted to alcohol by 9 when she came into the foster care system herself.  She was crack addicted at 13.  Her first baby came and was taken before she could even see her at the age of 17.  She is HIV+, bipolar and schizophrenic.  She was kicked in the stomach while pregnant with Marriela and fell down a flight of stairs.  While inpatient, they told her she was only 19 weeks pregnant and was in the midst of a miscarriage.  She was monitored closely due to her other injuries as well and was checked often to see if she had completed the miscarriage.  She was asleep on pain meds when a nurse checked and discovered a tiny girl breathing, wrapped in her cord lying motionless on the sheets.  Immediately it was apparent that Marriela wasn't just 19 weeks, a code was called and my little girl was whisked away where she spent the next 3 months fighting for her life, addicted to several drugs, in a pain killer coma (as they had treated mom heavily due to her injuries and assumption of a non-viable pregnancy). 

Fast forward, we met Marriela, in person, on her first birthday.  She was tiny.  Only 11 pounds still at a year old.  She couldn't sit or stand, but had an amazing smile she shared it readily.  We knew we were taking her home.  I picked her up from Boston when she was 16 months old.  She had gained some weight, 16 pounds at 16 months but was clearly not "well".  We had shared our concerns that her medical needs in Boston may have been being understated and that the 70 year old foster mom may have not known her true needs.  When she arrived we knew immediately we were right.  Her asthma and breathing were terrible.  I spent weeks on end up all night giving treatment after treatment and keeping her O2 on.  We added an apnea monitor because she started "forgetting" to breath.  She was eating rice and eggs and whole milk at her foster home.  She could not grow or gain weight and the doctors were highly concerned that she was failure to thrive due to a severe underlying issue.  We started her back on a bottle with a prescription formula.  It was slow and her poor belly swelled to 3 times its size with every bottle.  No one knew what was wrong. 

Fast forward again, Marriela has grown and at 3 she begins to take her first steps with her AFO's (foot orthotics).  She finally outgrew her infant car seat and broke the 20 pound mark at 3 years 1 month.  I turned her around and put her in a "big girl" car seat for the first time.  She LOVED it.  At 3 1/2 we knew her mothers genetic contribution was going to be a mental health disorder among other things.  We began the quest for help early.  She had a brother that was admitted to the hospital at 9 years of age for severe mental health issues and was not released for a year.  I would not and will not allow such a fate for my sweet baby girl.  We started with the typical ADHD meds and over time moved up doses, tried different medications and eventually started on actual mood stabilizing medications at the age of 5.  She was/is one of the most distractible children you will ever meet.  With the exception of watching her current obsession of the moment on youtube, you can't keep her focused on anything for more than a moment at a time.  As the developmental pediatrician realized she was more than his area of expertise was equipped to handle, he referred her out to a psychiatrist. 

This was a new chapter.  A new experience.  A new set of rules, meds, trials and tribulations.  Over the years we've tried many things.  A lot have worked but when it doesn't, it's not a mild failure.  Typically it's a terrifying trip into the unknown and her reactions to medications have ranged from none to a state of mind I can only liken to the abyss of insanity.  Once, they started Depakote.  She became scared, beyond words, her mind was racing and her heart was thumping out of her chest.  She couldn't stay still and she lashed out at anyone and anything that came near her.  She didn't sleep for 6 days straight.  We wanted to call someone for help, but couldn't figure out how to safely get her into our car.  We couldn't safely get her even into an ambulance.  Where would they take her?  What would the fill my little girls body with?  So we stuck it out at home and weaned her off of that evil drug on our own.  She spent almost 4 days wrapped in the safety of our king size bed so she wouldn't herself or anyone else.  Once the drug was out of her system. . . Marriela was back.  Meds have a risk with everyone we try.  But not using meds has proven just as big a failure. She needs meds, just as a seizure patient needs meds to stop the seizures.  Marriela needs meds to regulate the chemicals in her brain. 

So we come to the present and assess it for what it is.  Marriela had a terrible time at school last week.  On Wednesday she really tried to hurt herself and in the process, hurt some teachers as they worked to protect her from harm.  We met with the team.  Lots of tears.  She is deeply loved and it hurts us all that we don't have answers on how to stop these events.  It's a torment for everyone, but most of all, Marriela. She is devastated afterwards, and once the air clears, she begins a round of apologies, voluntarily and with sincere remorse. 

The course has changed.  She's bigger, she's stronger, but she's developmentally, still a little girl.  She has a brain that works at the speed of light and when a negative thought invades, it darkens everything.  A good or better yet, a great, thought makes her shine like the sun.  We are now working with her team to keep her at her beloved school.  The future is fuzzy.  There is no place that meets Marriela's unique needs.  No program that will love her and treat her with the level of respect she receives at her school.  Yet, we will be forced for next year to make changes.  As parents we are facing the unknown for our little girl who has proven and demonstrated the indelible human spirit.  The desire to persevere despite incredible odds as a baby and now as my amazing daughter, has made me a better, albeit, clueless, parent. 

 

Renee