My baseball player!

Marshall

Keegan

It has been awhile since I posted an update. 

My twins sons are about to turn 2 on the 27th, where have these 2 years gone?  They flew by in an instant.  I feel like I missed out on so much of their newborn baby phase.  Like they skipped it, went straight to toddlers.  Dealing with Childhood Cancer, will do that I guess.  Make things fly by quicker than you expect them too.

Keegan, is nearing his 2 year diagnosis date, July 31st will be 2 years since we heard those words "your son has cancer".  

July 11th 2009 we had taken him to the local ER where it all started.

July 31st 2009: "Your son has Neuroblastoma, it's a type of cancer, and we believe it's 4S" Every moms most dreaded words.  He had just underwent a liver biopsy.  My sweet little tiny boy had just turned 3 months old.  3 months later....we heard more terrifying news.  "Your sons primary tumor is growing.  It's going up his back bone and in between his vertabrae, he needs surgery, quickly, its starting to press against his spinal sac, we can't get the portion of tumor that's in his abdomen, it's wrapped around major blood vessels if we knick one...he could die" Terrifying.

Oct. 30th 2009 our little man went in for around a 7 hour surgery.    My little man had just turned 6 months old 3 days prior to this surgery. 

10 days later on Nov. 9th, 2009 he started the 1st of 4 cycles of chemo.

The first cycle was a 3 day inpatient chemo.  The 2nd chemo was on Nov. 30th and was a 2 day inpatient, he had just turned 7 months old.  December came around and Keegan was supposed to have scans to see how the left over tumor in his abdomen was reacting to the chemo.  He ended up having a fever spike and was admitted into the hospital.  Fever spikes are not uncommon for Childhood Cancer patients, but they have to be admitted and checked for infections (like possibly the port had gotten infected, thankfully Keegan's never had).  His fever spike was due to his bodies immune system kicking back in again after the chemo.  Every time Keegan had a chemo, he had to have a shot once a day for 10 days once we were home.  It was heart wrenching to have to hold down your baby and give him a shot in his tiny little thighs, but I had to do it.  Every other day a home health nurse would come and would access his port (essentially driving a long thumb tack like needle into a little "rubber plunger" that was right under the skin in his chest that had a tube connecting to a major blood vessel to easily draw blood). 

Going to the Oncology clinic every month for exams, and a urine test (with Neuroblastoma you can monitor the cancer levels in the urine, this is also a test that COULD be done at birth which is the ideal time to catch this cancer, Neuroblastoma is at its most curable during the "newborn" phase (between birth and a year old). If your child is diagnosed after a year old with Neuroblastoma a successful treatment is much more difficult and your child faces a very hard road.

While Keegan was in the hospital Dec. of 09 (the first time) for his fever spike, they did do the scans and the tumor was reacting well to the chemo, so they continued.  He proceeded to do cycle #3 of the chemo the 21st-23rd of Dec.  We were home on the 23rd in time for Christmas Eve and Christmas.  However, Keegan ran a fever spke on Christmas day and was back in the hospital on Christmas day.  He had a fever spike, as well as Pnuemonia, but thankfully his port was still clear of infection, and the pnuemonia was treated well with antibiotics and he came home before the New Year. 

Jan. 2010 Keegan becan cycle #4 of his chemo. 

Feb. 2010 he had more scans and things were looking good! The tumor was reacting to the chemo (which BTW Neuroblastoma doesn't react to chemo the way you would think cancer does, it doesn't "kill" the cancer automatically, it's kind of weird actually). 

Feb. March. April came.  (In April the boys turned a year old, BIG mile stone we partied it up for those 2 awesome little boys! We also noticed around this time Marshall was starting to do some odd things and we got him in to see a Neurologist) May came and Keegan had more scans, they too looked good too! We celebrated a joyous Mother's Day. We also found out that Marshall was having Partial Complex seizures.

June came and Keegan participated in his first Relay For Life (he was the youngest participating survivor).  He was also able to get his PORT removed!

July came and more scans, and they were good as well.  We also "celebrated" (if that's what you want to call it) Keegan's one year since diagnosis. We weren't celebrating the diagnoisis, but the fact he was STILL WITH US a year later!

August we were told that Keegan was No Evidence of Disease (they do not generally use the term "remission" persay with Neuroblastom or many other Childhood Cancers) This was still a WONDERFUL thing to hear!! It meant that YES Keegan still had a tumor (and probably always will) but that the tumor was NOT active.  But he is not out of the woods.  He still has 2 go through 5 years of intense monitoring and scanning on a regular basis to watch for any reaccuring cancer.  The first 2 years are very essential.  So far...we have one under our belt.  

September was good, October came and we celebrated that it was one year since his big surgery! Keegan got to participate in his FIRST Halloween with his brother and sister, and it was a blast.  November he had more scans (and that was also another big mile stone as that was one year since his first chemo).  The scans still looked great.  We had a terrific Thanksgiving that year!

December was great, and we were able to take the kids to see Santa! (You never know how important the "little things" and little family traditions mean until they are taken away and you can't do them). 

During Keegan's cancer we were very alienated from the world.  We denied visitors during cold and flu season so our little man wouldn't get sick.

We got through it.  Together as a family and with God. It tested our faith, but through it all we believed in God.  Trusted that he would get our son through this, that he would get us through this.  And he has.

We've lost friends along the way. 

Jan. of 2011 came and went and we had a great monthly appointment.  February came and our little man had his one year OFF TREATMENT scans, a BIG BIG milestone!! We got some  great news.  Since Keegan was doing so well we only have to go to clinic every 3 months now, and they will do the urine testing and  scans at that time.  Yay! A great thing!!

It is now April and the boys will be celebrating a WONDERFUL 2nd Birthday!!

May will be here before we know it.  Just 6 days after they turn 2 Keegan has his next scans.

Scan months are stressful. 

Nerves are on edge.  He isn't allowed to eat for several hours because he gets sedated, he has an IV placed in his hand and we have to fight with him about that, not ripping it out and holding this boy still...is VERY hard. He may be tiny..but he is unnaturally STRONG and FAST!

Thank God we haven't noticed any big developmental problems with him.  You may not know this, but there hasn't been a new treatment approved for Childhood Cancer in like 20 years.  Did you know they use ADULT treatments, on children?  Childhood Cancer's are NOT scaled down versions of adult cancers, they are completely different.  And there isn't just ONE type of Childhood Cancer.  When they talk about ADULT cancer they don't call it "Adult Cancer" No.  They call it BREAST, PROSTATE, COLON, etc etc cancer.  When they talk about Childhood Cancer....they call it JUST that.  CHILDHOOD cancer.  The affects of having cancer in your childhood/adolescent years last your entire life.

Because of the chemo Keegan was on he has the possibility of having heart problems, being sterile and unable to have children, being small in stature as well and that's just 3 of the possible side affects.  It's a lot more than just "losing some hair, which Keegan never really LOST his hair).  Thankfully he also never had to go through radiation.

Children have a longer life expectancy after they are reported "done" with treatment and monitoring (which is around 5 years if everything goes well and they don't relapse), than adults do.They have to struggle their whole life with the issues from treatment.  Did you know that many childhood cancer patients never marry or have kids (many cannot have kids). 

Many children lose an arm or a leg from their cancer (usually from bone cancers), many are left with severe disabilities such as permaneant brain damage, learning issues, seizures, dialysis, and many develope other cancers because of the chemos they had to have to treat the original cancer.

Many children pay the ultimate price, they lose their lives.

Did you know that Childhood Cancer kills more children than Pediatric Aids, but gets way less funding? (My heart breas for the Pediatric Aids children as well and that's another issue as well as Autism that I believes needs some serious attention along with Childhood Cancer).

It's been an UP and DOWN couple of years! But right now?  We're doing good.

My daughter is 3 and a half and loving preschool.  During all of the chaos with Keegan she developed a language delay.  She is seeing a speech therapist and she is improving so much! SO proud of her! She is a VERY bright little girl and knows a LOT just has problems communicating sometimes, but she is getting there, and she has picked up sign language very well also which has helped a lot.

She's such a wonderful little girl and I am so proud of her.  She's been WONDERFUL.  I couldn't ask for a better daughter. My little Kamilah is turning into a big girl now! She's no longer my little chubby curious baby! She's my beautiful tall slender curious amazing, funny, sweet, caring, child! She makes me so proud every day.  She is currently participating in the "Start Smart" program where she is learning how to play baseball.  This summer she is taking swim lessons, and we're hoping to start her in gymnastics soon.  She loves books, and loves to write.  Arts and crafts are one of her favorite things.  She LOVES the color pink, and princesses. She loves to drive her big ol' pink Barbie jeep around. She LOVES Barbies, and she loves to catch bugs and frogs.  She's 100% potty trained.  Since she is having some language delays we have been taking her to see a pediatric ENT and getting her hearing tested.  She did score a little low on her hearing test but she also had a lot of wax build up and fluid behind her ear.  Goes back in May for another hearing test and to see the ENT again. correct her tracheamalasia issues as an infant. 

Marshall is a tough guy, but so sweet all at the same time! He's doing amazing with his siezures, he's still on Keppra and ges back in June to see his Neurologist.  They may try to wean him off of his meds.  I still worry all the time about Marshall developing the same cancer as Keegan.  If  Marshall were to be diagnoised now after the newborn phase...treating his cancer would be very scary and touch and go.  But so far, he's one healthy little guy!!! He runs, climbs, talks, eats great, is sleeping better he's always had sleep issues due to the seizures and night  terrors, and he is learning so much.

Keegan is doing well and isn't too much smaller than his brother.  He is talking well, and RUNS super fast! He is strong, and has the most crazy terrible 2 tantrums ever LOL.  He climbs like a monkey, and is fearless.  He isn't afraid of anything and is quite the dare devil which keeps Mommy on edge!! I swear he will be the first one to get stitches or a broken bone, if I could I'd put him in a plastic bubble!! I try not to coddle him too much but it's hard not too!! He does need to be a little boy and get dirty and rough house...but he's been through so much, I don't want him to get hurt or sick anymore! (Don't want any of my kids hurt or sick in anyway!)

As for me?  I'm coping.  Kept busy by 3 kids close together in age! They are a joy though, but yes we have our STRESSFUL days LOL.  We manage to get through them and I still have all of my hair...althoug...its looking a bit grayer in areas than it used to!! And I"m only 26!

I sew and KNIT (that's my new hobby) it is relaxing. Working on more Relay For Life stuff.

My husband is in college and loving it.  I'm very proud of him, proud that he is living a dream of his and doing something he's always wanted to do. 

Our life will never be what it was before our son had cancer. We have a new "normal" now.  I will always worry about Keegan and his cancer.  Always wonder WHY.  Why did MY son get cancer??

There are some things people don't know about Childhood Cancer....

  • You don't have to have a family history of cancer to have a child with cancer.  ANY child has the same chances to get cancer. 
  • No matter what the commercials say...childhood cancer is NOT rare. 
  • There are MANY kinds of childhood cancer (Brain Tumors, Neuroblastoma, Leukemia are the top killers of kids with cancer).  There is also bone cancer, liver cancer, kidney cancer, numerous types of brain tumors, and so many others. 
  • Babies can be BORN with cancer.  Yep.  BORN with it.  Could you imagine having a baby just minutes old and finding out they have leukemia??
  • Babies can get chemo and radiation, and right away. 
  • Every day 46 children will be diagnoised with cancer.
  • Every day 7 children will die from cancer.
  • GOLD is the color to show support for Childhood cancer.
  • Childhood cancer is very under funded with a whopping 3% of funding from the government (and with all of the federal cuts and stuff that will probably be even less funding soon!)
  • 40,000 children are being treated for cancer at this time.

Families going through something like this, just need lots of support!! A shoulder to lean on, someone to LISTEN (you don't have to talk and try and make us feel better, chances are anything you DO try and say really won't make us feel better unless you've had a child with cancer as well).  Just listen, and give us a hug, or come over and ask if we need help cleaning or if we want to go get some coffee or something.  Give these parents a call once in awhile and see how things are. They do not always want to talk about their child's cancer.  Sometimes finding out how things are in the outside world is a welcome distraction. Bring them dinner sometime, make them a gift basket for the family and one for the child.

Don't whine about your child having the flu to a mom who has a child dying from cancer, or who is going through treatment, you may not like the response you get.  There ARE worse things than the flu....(I would LOVE for my son to have JUST had the flu and never have cancer!!)

Not to say we don't CARE about our friends healthy children (WE DO!) but sometimes it's annoying to hear friends complain about certain things. 

If you know someone who has lost a child to cancer....don't "forget" their child.  It's ok to bring up the child to the person.  They like to know their child hasn't been forgotten, you aren't gong to hurt their feelings.  They want ot know their child's life was meaningful and not in vain.

Donate to organizations like St. Baldrick's that work diligently for cures to Childhood Cancer and for better treatments, and making the lives of these children better.

If the child with cancer has siblings...do not forget them.  They go through so much and give up a lot.  They are often put on the back burner to their siblnig with cancer, unintentionally the parents don't mean to ignore them or not make them feel special.  But the needs of the sick child, often come first.

Take the siblings out somewhere special (to a ball game, the zoo,  the pool, a movie, even the library) Or offer to sit with the sick sibling so the parent can spend a few hours with the other siblings.  

If you don't know what to say to a family that is dealing with Childhood Cancer....it's ok.  You don't have to say anything.  Just make yourself available to be there if they need you.

Anyway, sorry for such a long post.

Mae

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