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  • I think your son has neuroblastoma

    Written 11 hours ago by Melissa Wiggins

    I THINK your SON has NEUROBLASTOMA.....

    This day last year Michael and I were told ' I think your son has neuroblastoma '

    At the time I had to ask...

    Is that cancer? I didn't know that it was ... I heard neuro and thought it was something in his brain...

    Infact neuroblastoma is a cancer that attacks the nervous system ... It forms large tumors anywhere in the body...it kills more kids with cancer than any other form of cancer... Safe to say you don't want your kid to have it...

    There is different staging for NB...
    If you lucky and it's caught in stage three I believe you have a 85-90 percent change of survival....

    This day last year I prayed all night for stage 3......

    My prayer was not what our story would be... That's okay because guess what? Cannonball is still kicking neuroblastoma's butt and that's with stage 4 high risk, amplified and with what was an inoperable tumor until after chemo.

    You see a lot in these hospitals we have been in...I've learnt so much..grown up so much.

    I have heard mothers cry out as their baby dies in their arms... Been across the hall as kids slowly die over a week with all their family walking the halls ... But I tell you ... Getting to fight is by far the greatest gift of all....I didn't get a call this day last year saying... ' your son is dead please come ' ' your son has 6 months to live' ' your son is not going to be able to talk or walk ever again'....

    No we got cancer and it's a FIGHT!! But can you imagine what the mother who gets the call ' your son is dead' would do for the ' your kid has cancer ' talk.... I know... Anything!!!!!!

    It's been a year.... But it's an extra year of life I have been able to cuddle and kiss my son, lay with son, support him and love on him. That my friends is a gift....

    The year has been tough but my parents always taught me there is always someone worse off than you... Always.... So stop your whining.... ( can you tell I wasn't allowed much sympathy growing up lol...thank The Lord...)

    The 24 hour rule is a favorite of mine... You get 24 hours of being in a funk and the next day you pull your boot straps up or in Florida but your flip flops on and you take action...

    Phrase of the day...

    Action equals results not dwelling...

    I choose action....

    And that's exactly what we did and do for Cannon... Put action in...
    results come out... Were seeing that in his urine numbers being literally on the border of being cancer free....

    Please pray for Cannon as Sunday he will enter the ICU and he will be in severe pain, experience hives, have breathing issues, require blood, require oxygen, morphine... The list goes on... I know what's coming... Thankfully he doesn't....

    Have a wonderful Easter....I always love this time of year it just has a special place in my heart and it's not just because I love yellow and pink ;)

    Written by Mumma-Bear
    Cannonball Kids' Cancer
    Thankful For The Fight
    Pray Hard

    Sent from CaringBridge iPhone app

  • Not Cancer Free... A People Pleaser NO more....

    Written Apr 17, 2014 7:10am by Melissa Wiggins

    Not Cancer Free...A People Pleaser NO more....

    So we don't get to hold the sign up saying cancer free... Just yet... But stay positive people... It's coming... I just know it is....I am not disappointed... Instead I'm ever more determined....

    Cannon is so close...

    The urine numbers are shrinking and I'm positive after this round Cannon will be officially NED... But not today... And that's okay...

    When I came into this cancer world heavily pregnant with twins and as a new mum... It was safe to say people would call me a people pleaser... I enjoyed making people happy... I still do... I was the person who if I ordered coffee with no sugar and it came with sugar ( even though I hate sugar in my coffee) I drank it... because I didn't want to upset or inconvenience the waiter or cause any issues...please don't think I was a push over... I wasn't... I just liked everyone to be happy and if people were unhappy I was unhappy... So I kept the peace .. Always...

    The cancer world changes you... No matter how hard you try you change...

    This world is not for the timorous.... and as for people pleaders like me? Well you realize it's a life or death situation your in and REALLY there is no room for people pleasing....

    When Cannon was diagnosed and Michael and I were researching what hospital to go to I recall saying to Michael ' what if they get upset about us going elsewhere ?' .... He shot me down like you wouldn't believe... And I'm ever grateful he did...( ps my husband is defiantly not a people pleaser and I love that about him) ...

    In the beginning mentioning other facilities to the doctors, nurses was so uncomfortable....

    Here is the reality....

    Arnold Palmer does not do stem cell transplants ( yet) they don't have the capacity here to do it... Again I say yet....

    Arnold Palmer does not have proton radiation ... Again I say yet ....

    Arnold Palmer's surgeon had done 3 or 4 surgeries ( his words not mine) similar to what Cannon needed in his lifetime...

    That was the reality.....

    So when a nurse on the fourth floor made a rude backhanded remark ( most recently) to me that we hadn't been here in a while and that's why Cannon's photograph was not up on the desk with the other kids... She was absolutely right... We had not been here in a while... And I guarantee if she was fighting for her son's life she would also not have been here for a while either.. Before coming into the cancer world I would have said nothing to her rude remark and instead smiled... I did not do that... Instead I responded very politely and said ' your right... But that remark is very harsh and unnecessary' ... Today I don't need to smile to please others...if people are rude I can tell them... And when it comes to Cannon... I have done many things to fight for him.. Including asking that a nurse with crappy attitude not be his nurse again ( my right as his parent)...something I would never have done before because what if the nurse ended up not liking me? Here is what I've learnt......

    I learnt...the hard way... There will always be people who don't like me.. Maybe I remind them of someone, maybe my accent annoys them, maybe my laugh bugs them, maybe I said something as a joke that hurt their feelings.... Lots of people don't like me.. Won't like me .. And guess what? That's okay today....I don't need everyone to like to me... Not today...

    I am the type of person who NO matter how bad something is.... There must be good... There is always GOOD...If you look....Always...

    So me being the proactive person I am .. While we were away like the nurse pointed out ;) ( sense my sarcasm there?) I asked doctors at Sloan and CHOP questions for Dr Guisti at Arnold Palmer and reported back the answers... I wanted so much to SHARE what I had learnt...and I did....why not share it? I did that to help better my home hospital... Even though we were away....

    I am happy to listen to opinion, reasonings, etc ...But when it comes to Cannon... Well ... There are NO LIMITS to what I will do to make sure HE lives....I must educate myself and be ready to fight for him when I need to.

    During antibodies last time I got into it with one of the doctors ... I fought for Cannon so hard to receive them and even though they told me they strongly suggested we stopped.. I knew he needed them I knew they would save him ... And they are....the doctor and I were at it for over an hour....( by at it, I mean I felt like I was in court arguing for my client ..just this time my client was my son)....

    If you would have told me a year ago I would strongly disagree with a doctor and tell that doctor to his face ... Me? The people pleaser? I would have said no way... Today.... It's life or death... There is no room for people pleasing... Cannon needs me to suck it up and DO... And trust me today 'I DO'...

    I am still extremely polite, no curse words are needed or necessary in my opinion... I can be articulate and passionate ... Yet to the point....and that's the goal today...

    I know as we enter next week where we do the IL2 and the antibody that I will face the challenges again.... I'm ready... For what is worth fighting for more than your own child? Nothing I can think off...

    Cancer changes your child..
    It also changes you...
    And if your lucky you learn some REALLY valuable lessons along the road.....

    I also want to take a moment and thank everyone who writes comments ... Yesterday there were some long comments and it was so nice to read them during Cannon's nap. I love to hear positive stories and what telling this very intimate story is doing for others.. I started writing here ( always from my iPhone - hence the poor grammar) to let Michael and I's families know updates since our families don't live close ... It's turned into so much more for me... I have in the last year realized I have a passion to write to express my feelings.. I truly in my heart believe it has helped me be the best advocate for Cannon and wife to my husband. Writing has become something I have become passionate about. Having a real blog someday can only be my dream ...... But I just wanted say a huge thank you to everyone who has and is traveling this roller coaster ride with us... I started writing here for you and somewhere along the way it's helped me too... Thank you... So much...

    Ps ' said nurse' is a minority here... Like my mum used to say ' there is always one' ;)

    Written by Mumma-Bear
    Cannonball Kids' Cancer
    Thankful For The Fight
    Pray Hard

    Sent from CaringBridge iPhone app

  • The Calm Before the Storm...

    Written Apr 16, 2014 9:57am by Melissa Wiggins

    The Calm before the Storm.......

    This day last year Cannon and I stayed home... He wasn't able to walk anymore... Being heavily pregnant never stopped me ( 37 weeks with twins) I took Cannon everywhere even Disney ... People looked at me like I was crazy ... I didn't care ... I was determined to enjoy every last minute I had with just me and my buddy Cannonball ... I knew life would be forever changed... I didn't quite know how. I was determined no nanny just me...I could do this ... Right?.... I had lots of plans for me and my three boys .... I still do... Just a little later than I planned initially....

    Michael was out of town I called him and told him Cannon wasn't able to walk and kept crawling... Michael told me something I'm ever grateful for... He said 'push babe' 'push' ... If you believe something is wrong then call the doctors back...

    After I got off the phone with Michael the doctors actually called me and they said how is his leg? I said worse.. They said ok google an Ortho doctor and get an appointment...

    I did exactly that.....

    The next day we had our appointment....( Thursday)

    We were at the Ortho doctors office almost all day.. They did an x-ray - I was so pregnant they didn't let me go in and Cannon screamed and cried most of the day...x-ray alone at a year and a half.... Yikes...

    I am a hands on mum - I asked to see the x-ray... It was so awful looking on his knees and lower leg... The doctor said this looks like a bacteria infection ... We did another x-ray and Cannon was just traumatized at that point.

    When I saw the x-ray I knew something really bad was happening.

    The doctor said CT tomorrow stat at Arnold Palmer children's Hospital..

    That night ( Thursday night) Michael got home from travel and he was just so upset... I said to him ... ' I hope it's not a tumor' ... Weird right? Of course this upset him and he got upset with me for even suggesting it... I told him I knew something bad was happening and he didn't want to hear that... Or believe it should I say...

    Friday ---- off we go to our first CT...experiencing what at the time was awful... For the first time starving our one and a half year old and watching him be put under...

    By the time it was all done and over it was 5pm... The nurse said the doctor is coming to see you...

    The doctor walks in he says... 'It's osteomyelitis an infection on the bone and were doing surgery... I look at him and I'm like when?? OMG my baby having surgery ? What?? No.... No..... It was truly awful... Michael was so upset... Cannon was upset... I was well ...pregnant ( that's all I need to say)...

    So we go upto surgery... I call my family and tell them to pray for Cannon...

    It's really hard to type this through my tears so I really do pray hard that people get something from this... Hope... Awareness... I just hope it does something for just one person today....I know I get so much from reading positive comments and prayers...I just hope I give that back...

    We are waiting in surgery.. I sign all the documents... Everyone in scrubs... Remember Cannon still hasn't eaten since the night before... And it's now 6pm...

    I am very good people reader ... I kept my ear and eyes on the surgeon the whole time, his body language changed.. He made some calls... He says to the doctor on the phone ' these labs don't look right, his blood work isn't tying in..could you have a look.'

    The surgeon comes over and he says I don't want to freak you out but I just want a second opinion ... The blood work isn't what I thought it would be and I just want to make sure were not dealing with tumors or something else here .. I don't think we are but I want to double check....we will do the surgery tomorrow at 7am but I want some consults for Cannon from oncology ( that word gives me horrible goosebumps) and from some other teams...

    I knew it in that moment... It was game over...

    I knew it had been tumors... I just had a sense about it...

    Michael went home to get a bag and explain to Olivia what was happening...

    Friday.... That night was the longest night ever... we did every test known to man... All night Cannon cried, test after test after test...

    I recall like yesterday the oncologist Dr Guisti coming in room and he said ' look at that handsome boy .. Nothing wrong with him' ... 'Can I press his tummy?' ... Cannon sat on his lap and Dr Guisti said ... Okay well .. I'm going to order some tests....

    By 9pm the nurse comes and says 'Dr Guisti wants to call your room'... I felt like I was about to vomit.. Why was the oncologist calling our room? No......

    I pick up...

    He says ' I don't think Cannon has a bone infection... I think he has neuroblastoma... I felt fuzzy headed... I said what's what? He said it's tumors.. At that point I could hardly breath I asked if I could pass the phone to Michael ... I gave the phone to Michael ...I googled neuroblastoma - it said cancer... I got back on the phone I said ... It's cancer???? Yes ... I will come see you tomorrow morning to confirm....

    I ran out the room... I couldn't breath... I have never had that feeling since... My chest was caving in... I was bawling....could hardly breath...

    Michael was so brave... He said babe... We don't know for sure... We will know tomorrow ( Saturday)...

    That was the only time I have bawled and fell to the ground since Cannon was diagnosed....

    Of course I researched all night about neuroblastoma... I prayed all night please not stage 4.. The stats were so bad...

    Dr Guisti walks in the room at 6am....

    He sits down...

    So it is ' neuroblastoma' ....

    ' what stage I say ?'

    ' it's bad it's stage 4... It's all over his legs, under his arms, huge tumor all over his abdomen it's actually pushing his organs to the side it's so big..he has a battle on his hands'

    ' yes but he will survive.. I mean he won't die? ( by the way when I asked that I asked that it was totally rhetorical..) ...'

    ' 50/50' Dr Guisti said ...

    Looking back I feel so bad for Dr Guisti... Here is this man in his 70's telling a heavily pregnant woman that her son could die...can you imagine having that job? I praise these doctors so much... Not something I could do daily... And there so dedicated... I'm ever grateful they sacrifice their lives for others...

    Today my Cannonball is happy... Bored mostly....

    Thank goodness for his amazing Auntie Nicole who always makes him laugh and smile... She is a gift to our family....

    Written by Mumma-Bear
    Cannonball Kids' Cancer
    Thankful For The Fight
    Pray Hard

    Sent from CaringBridge iPhone app

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