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A Year To Go

We made it home from scans. We will have results of the MIBG scan later. But I will recap the info I do have here

His CT scan from Wed. looked great, as did his urine tests.
No results on MIBG yet, will get a call today or Monday about them.

If the MIBG looks good (and they expect it will) then Keegan will not go back in for scans for a YEAR (so Feb. 2015 will be his next scans). Those will also be his LAST scans (if everything looks good). That means he will have reached his 5 years OFF TREATMENT mark. After that, no more scans but he WILL go in yearly for urine testing (yay no more pokes)!

They are happy to see how well Keegan is doing, told me some things to watch for JUST in case his cancer comes back.

Otherwise, he's a healthy happy awesome growing boy.

I *did* almost have a big cry fest at clinic today though, it was SUPER hard seeing the 3 babies that were at clinic. Seeing the faces of the parents, hearing those children cry as they went through what Keegan had went through at those ages, and it all just kind of hit me SUPER hard today, there were tears but I hid them fairly well (buried my nose in a book). Keegan's journey is almost at that 5 year mark, and those babies at clinic, their journey's are just beginning, and my heart just was all over the place for those parents and whatever they may face during their journey.

Keegan took one of his preschool pictures in to give to the nurses for the big board they have in the clinic with all the kids pics on it, he didn't want the nurses to forget him since he won't be there for a year (they assured him, that they will NEVER forget him). I can only imagine how emotional I will be next year when he goes in for scans, his last scans. It's scary having the scans taken away, but a relief all at the same time. It's such a scary crazy mix of emotions. He's been going through this since he was 2 months old and all of this testing and stuff started, and then his cancer diagnosis at 3 months old, and the chemo, and surgeries and the couple of scan scares we had a couple years ago. The time spent away from Kams and Marshall while we were with Keegan, the strain cancer put on my marriage and my own health, the stress, anxiety, emotional toll, the affect it has had on all 3 kids....it's been a journey, that's for sure. A journey we couldn't have gotten through without God leading us. He was there for us when we didn't feel like we had anyone else. We will always be forever blessed and thankful for everything. All of our friends/family that stood by Keegan. The people we've "met" (even if it is just on FB) that are like family now because they KNOW what it's like to have a child with cancer.

Here I go getting all teary eyed again, oh what a day it has been....

It's hard being at clinic and seeing those families, knowing how they feel because you've BEEN there.  You've watched your own son grow up in that clinic, and you know all too well the looks on those parents faces.  The tired, scared, hopeful, strong faces.  How they sit there and watch their child while talking casually with the nurses and the parents blink back the tears that are right there at the edges of their eyes.  Moms and Dads, we all feel it. 

You look across the room, first at the child sitting  there, whether they have in an IV, are receiving chemo, are wearing their EMLA cream to numb the IV area, are bald, full head of hear, crying, happy...you look at them, and you smile.  You wave, you say "Hi".  You look at the parent or grand parent, or even aunt or uncle sitting with the child, and you shoot them a little smile, a friendly eye that says "I get it, I understand"  You send them all the understanding good vibes through the air that you can, and say a silent little prayer for them that it WILL be ok.  You WANT it to be ok.  You don't know if you'll ever see that child in clinic again (due to your own scheduling or whatever).  But in that moment, you are connected, at least briefly.  You know you are both their for the same reason.  Your child has cancer, or a blood disorder. 

Sometimes you sit there, and wonder to yourself, I wonder which cancer (or blood disorder) that child is fighting.  Are they fighting the same cancer my child has fought?

Sometimes, conversations are started.  I remember some of the first conversations I had with moms and dads and grandparents at clinic.  They were the ones inspiring ME, giving ME hope. 

Now?  When I talk to other parents, they are generally just starting their journey, and Keegan is the one giving them hope that things WILL be ok, that you can get through this. You can hold on, because you have to.  What other choice do you have?  You have to grab on to whatever hope you have, and cling to it. That gets you through the hard times, even if just barely. 

I remember right after Keegan was diagnosed, we had NO CLUE about Childhood Cancer, other than a few names of a few cancers.  I didn't know BABIES could get cancer, I didn't know babies could be BORN with cancer.  I got a big education in Childhood Cancer in a very short matter of time.  It was a LOT to absorb.  It took me a good month to say Neuroblastoma without hesitation to make sure I was saying it right, and to be able to spell it right, and to be able to spew out the information about it, and where it was located on my son and what the protocol was going to be (for him).  Once I 'got it' the information is there and will always be there on the tip of my tongue, even years from now. 

In the beginning we only knew what the doctors were telling us, and we were scared.  We didn't say it out loud, but we knew...cancer could kill.  It scared my husband and I to the core.  Would it take our son?  Then we would be upset with ourselves for even THINKING those thoughts.  OF COURSE IT WOULDN'T! NO he was going to KICK CANCERS ASS.  Then at the same time you are like...you want to be confident, not cocky, and you know realistically it COULD happen.  So you have an internal war with yourself.  Battling two different sides of reality.  He could beat this.  He might not. So you plan the celebrations for each VICTORY, but you silently plan the rest, because you don't want/can't talk about it out loud.  You know if something WERE to happen, you need those plans made, just in case.  That way you aren't an emotional wreck trying to 'prepare' last minute.  They are awful thoughts you don't want to think of. You then see through your new found community of those who are in this childhood cancer journey too, how REAL those possibilities are as you watch parents have to say good bye to their children, and it saddens you very deeply. 

Sometimes the bad news for other families can gang up on you, and feel like a ton of bricks on your emotional wall.  You can't bare to see anymore pain being inflicted on these children, these families.  You don't think you have any tears left in you, and you pray and pray and pray that it isn't your family, but you pray and wish that it wasn't these other families either.  You don't want it to be ANY family.  So you pray, for a cure, better treatments, more early detection for childhood cancers.  For more knowledge, more GOOD news. 

Sometimes around my own sons scan times, I've had to step away for a bit, because it always seems that kids fighting Neuroblastoma have relapsed, or earned their wings, or have taken a turn for the worst.  It can be devastating when you are trying to be hopeful that your child's scans and next clinic visit will be positive.  Then you feel guilty for stepping away for a bit and NOT reading.  It's not that you don't care, it's that you care so much it physically affects you and it's hard to focus on what is going on with your own child and his scans, and if YOU are freaking out...they will freak out.  You don't want your child freaking out.  That just increases the emotional state of the whole thing. 

At least that has been my families over all experience the past several years now.  I'm sure it is different for everyone though. 

Knowing that Keegan has only one set of scans left...is scary, and wonderful all at the same time. 

I want to shout it from the roof tops, but then I don't want to think about it at all.  Will there always be this awful internal war within myself when it comes to my son's fight with cancer? The wanting to feel JOYFUL and HAPPY but at the same time feeling guilty and sad? The not wanting to sound overly excited and hopeful, when you never know what could happen in the next moment, but yet you are LIVING in each moment, not taking it for granted because you DON'T know what could happen. I don't think the roller coaster of emotions ever go away.

So now we do the "waiting game" again, just waiting for a call with results on the MIBG scan.  I still hate waiting.

Mae