Saturday, November 10, 2012

The Stages of Grief

   
     They say that you experience five stages of grief:  denial, anger, bargaining, depression, and acceptance.  I also know that this process is not cookie cutter and it is a continuous process.  I know that tomorrow I may accept this place or I may also just live in the la la land of denial.  But today, today I am angry.  I am so angry.  I want to scream.  I want to rage against whatever I can right now, because it is not fair and today, in this moment, right now, I am angry.  I'm angry because this place where we find ourselves is not fair, life is not fair, and that my child is two years old and has a tumor on his brain stem.  I am angry because we are good people, who put good vibes out into the world and follow the rules and something spectacularly shitty has happened.  (Full disclosure: Today I have the mouth of a sailor.)
     The neurosurgeon from CHOP called me Thursday afternoon with the results of Wednesday's conference.  It was agreed that the best course of treatment for Gray would be surgery.  The CHOP neurosurgeon said that while meeting with Gray's CHOP oncologist was not 100% necessary, that he thought it was a good idea.  He said the oncologist would go over what was discussed in conference in great detail, go over the images of Gray's brain, and be a good source of information for me and Tim.  Yesterday, we traveled to CHOP to visit oncology.  Now the oncology floor of a children's hospital is a place I never wanted to be in my life, but despite the horrendous things that being on this floor mean, it was a place where children were catered to.  After the initial sign in we were led back to a room that was so child friendly, paints, puzzles, crayons, play dough, cool toys, temporary tattoos and a kitchen full of snacks, drinks, and yummy treats for the kiddos.  We waited there, in this little child's play place, for two hours since the oncologist had to care for some patients who had fallen very ill suddenly.  When we finally met the oncologist I knew I liked her immediately.  She was warm, open, and Gray liked her instantaneously.  She led us back to her office and we got to talk for over an hour.
     The first thing she said was how advanced Grayson was; she said that his ability to express what was happening was remarkable.  We are fortunate.  So blessed by this stroke of luck, because this tumor, this tumor is in a superbly, horrid place and the bigger it gets the worse its affects.  We then looked at Gray's scans for what seemed like hours.  While we had seen them on Halloween, when this nightmare all started, this time we were emotionally capable of handling the images.  The tumor is on the backside of Gray's brain stem growing towards his face, it is presenting to be inside the stem, rather than just on it.  (This was sucker punch to the gut number one.) Seeing as how the tumor appears to be inside his brain stem, as well as on it,  it would mean that the very best we could hope for with the surgery is a tissue sample.  They cannot remove any part of the tumor that is in the stem without irrevocably harming my baby.  In addition, (and this is not at all medically correct terminology, but this is how I understood it) the flow of fluid from the top of his brain to the bottom has two drains.  This tumor is almost blocking one of the drains, fluid is only able to drain slowly. As the tumor grows it will, eventually, block this drain, which means Grayson is at risk for hydrocephalus.  (Sucker punch to the gut number two.)  The location of Gray's tumor on the brain stem is not good.  It will eventually impact many functions: eating, speaking, swallowing, walking...this tumor will, without treatment, affect Grayson's quality of life.  It was then that I realized that she had said that best case scenario would be a biopsy of this tumor and removal would be essentially impossible.  If the tumor could not be safely removed and the tumors presence was, for lack of better words, dangerous, then what would they do to eliminate the tumor?   I asked the question I never wanted to ask in my life.  "Are you telling me, that in your medical opinion, that Grayson will need chemotherapy or radiation?"  Now I knew that it was a possibility.  I knew that words like chemo and radiation were on the peripheral of the conversation, but there is a drastic difference between a "possibility" and an "almost certainty." The doctor said that the chemo would take place across the course of a year. (That was sucker punch to the gut number three.)      
     I so very badly needed to believe that surgery would remove the tumor and life would go on.  That this would be a hiccup, a detour, a slight skip in the soundtrack of our lives.  That if I just stayed strong until such and such date, if I just held it together long enough for Grayson to get this surgery that we would be ok.  A year or more is a really long time to hold your breath in fear that you may fall apart.  I don't do well with chaos.  I don't do well with disorder or question marks.  I like to know my direction and I function best when I have some sort of control over a situation.  I have no control.  I have no control.  I have no control. We just moved to our dream house, in a dream neighborhood.  A gorgeous house where a mother wants to raise her children.  I keep staring at the empty bedroom that sits between Grayson and Aydan's.  Tim and I had planned, oh that damned word, planned on trying for another baby this month.  I talked all summer about November...November...November.  Halloween and a raisin sized tumor on Gray's brain stem changed the plan.  Brain surgery and chemo mean the pause button has been pushed.  There will be no baby anytime soon and I am at peace with that, but it's the chaos, the lack of focus, the lack of direction that disarms me.  That makes me angry.
      I am also angry at the first neurosurgeon we spoke to at AI.  In my original post I omitted the whole truth.  I gave the "good" doctor the benefit of the doubt, but now, a week and a half into this mess I am raging mad.  The doctor did say that he would want to observe for three months and he, "sorta" told us, that a second opinion would be best.  But he first told us that he didn't think Gray's brain tumor was the reason for his dizzy spells and that we should contact ENT.  Let that marinate.  ENT.  As in Ears, Nose, and Throat....not Ears, Nose, Throat and Brain Stem.  ENT.  Yes, let's IGNORE the tumor we found and just talk to your ENT.  A week and a half ago I accepted that this doctor was, in a backhanded way, telling me to seek a second opinion and giving me such a preposterous treatment plan of seeking advice from an ENT that I would run for a second opinion.  Now, I am mad at him.  Mad because, as I told our pediatrician last night, "I think "neurosurgeon consult #1" should get his ego out of his ass and say that he is not qualified to perform this surgery or treat this tumor."  I keep thinking of the what ifs, what if I wasn't educated  What if I didn't have the resources I do.  What if I didn't have an amazing pediatrician?  What if I consulted ENT and just watched this tumor for three months?  ENT versus major brain surgery and a year of chemo.  Talk about a difference in opinion, huh?
     So today I am angry at "Neurosurgeon #1."  I can't be mad at God, I can't be mad at Tim or myself, I can't displace my anger to anyone really, so I choose to be angry, spit fire angry, at "Neurosurgeon #1."  For those of you have been patiently, lovingly waiting for me to fall apart, yesterday I crumbled into a million pieces.  I cried in the doctors office. I cried in the hallway.  I cried in the elevator.  I cried in the parking garage.  I cried the entire ride home on 95.  I cried when we walked into my parents house.  I cried when my dad hugged me.  I cried when my mom hugged me.  I cried when I looked at my boys playing together.  I cried, big huge gulping sobs, when my pediatrician called.  I cried all last night.  Tim and I cried together and we cried separately.  He got his tears out and I got my tears out.  Now I am angry.
     So now what?  Well, Tuesday Gray's case is being presented to the Tumor Board at Hopkins.  I will hopefully hear Tuesday afternoon with Hopkins' recommendation.  I honestly do not anticipate being told anything new,  I don't think the statistics of the surgery will be different.  I think the story will have the same beginning, middle and end.  I think that I will listen to Hopkin's and  find reassurance in hearing that he too thinks that CHOP has laid down a solid groundwork.  I feel peace in knowing that Tim and I will most likely place our trust, our hope, our child's well being into the hands of CHOP.  I told our pediatrician that by this upcoming Friday I want to have a surgery scheduled for a future date and a plan in action.  I was told that once we committed, CHOP would want Grayson to have the surgery by, at the latest, Thanksgiving.  I very well may be in the PICU of the hospital with my little Miracle this Thanksgiving.  I don't see one of my traditional Thanksgivings surrounded by my big, huge, Catholic family at my Grandma's.  I don't see Uncle Carmine's pumpkin ravioli or Aunt Barbara's mashed potatoes.  I don't see one of Steven's blender concoctions in my hand.  I don't foresee an "unspoken" bake off with my sister on who can bake the best dessert.  I don't see a game of Scrabble with Gram (I fully planned on beating her for the first time in my life this Thanksgiving) or a "slosh party" with the older cousins when the younger cousins go to bed.  I don't see 3am wake ups to do Black Friday shopping with my mom, Aunt Moe, Coll, Stef, and Chris.  I don't see that this year, but I do know that this Thanksgiving I will have so very much to be thankful for.  I know that  this year I will truly know the meaning of thanksgiving, family, and blessings.

     Today I am angry, but I think sometimes anger is a good thing.  I think it enlivens a person to do something, to rage, to push on.  I am pushing.  I am raging.  I am angry.  
         
   

17 comments:

  1. Oh Jackie, I have no words. I can't even imagine what you are going through. I am sitting here hysterically crying reading this. I am praying so deeply for you and your family. If you need anything, anything at all please let me know.

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  2. Jackie,
    We do not know each other. I heard about your blog from a mutual friend (Dawn Gillian) when she asked for some prayers for your family. I can speak from personal experience and tell you CHOP is ranked #1 in the country for a reason. Everyone from the doctors, nurses, respiratory therapist, physical therapist, even housekeeping are absolutely amazing. You cannot go wrong with CHOP. Their motto is "Hope Lives Here" and it truly does. Much love, hope and prayers are being sent to you, your family, and your beautiful little Miracle boy.

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  3. Jackie, we don't know each other. My name is Debbie, I am Maria McNulty's mom and a blogger here on this site. Maria told me about Gray, and I have been praying for him. As a lapsed Catholic, I started praying again when Maria was expecting Gracie. My prayers are new, raw, hopeful. I will continue to pray for your little one and your family. Please know that loving thoughts are being sent your way by people you'll probably never meet. A prayer for one little boy, prayed by so many people is powerful, strength in numbers and all that. We are all water in the same ocean and owe it to one another to care and to help however we can.

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  4. Jackie,
    First I just want to say I am praying for your family and lil Grayson!! I was told about Grayson from a friend of your sister's. My daughter was diagnosed in December of 09 with AML leukemia. I do not know much about brain tumors, but do know some about chemo, radiation and feeling like your world has turned upside down. I have gone through most the feelings you described and still do sometimes. This journey is a difficult one, but one that does have moments of joy. Romans 8:28 is what helped me on my hardest days. If there is anyththing I can do please let me know. If any questions, just need to talk or vent email me anytime. My email is Carolinagirl703@aol.com. BTW my lil miracle girl is almost 3 yrs in remission.

    Praying !!
    Christine Mercantini

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  5. Jackie,

    I have no words as I read this blog hysterically crying. My thoughts and prayers are with you guys. I seriously think about you guys most of the day everyday since hearing the news. (I work with Tim and have met Grayson numerous times). He is such a wonderful cute little guy. Thanks for blogging about your experience and thinking and praying for you guys.
    Diana Skeem

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  6. Please know I am praying for you all!

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  7. I am a mom of child with Brain cancer with mets to the brain stem and spinal cord. No one understand the pain and grief you are going through more than me. I encourage you to seek out yahoo groups for support groups for brain cancer. They have helped me so much to bounce items and have someone listen that understands. I will pray for you and your family. My son also has a website www.littlekaseman.net fill free to email me kaseman2310@gmail.com.
    Love and prayers Amy

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  8. My prayers go out to you. The leading doctor on DIPG brain tumors is Dr. Kathy Warren at NIH. She would be your best second opinion. There are some new studies out there on DIPG. www.clinicatrials.gov is the database where you can research all available trials. Know that not all doctors will tell you about ALL trials that you are eligible for. There is a DIPG Awareness group on Facebook that you may find helpful, as other parents who have walked your path are available to share their experiences.

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  9. My heart feels your pain. Our little 2 year old, Grayson, also has an inoperable brain stem tumor. Sending many prayers to you and to your stong and handsome Grayson. Never.Ever.Give.Up.

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  10. I cant imagine! I am angry for you!! Thoughts & prayers!! Today & everyday, from Missouri!!

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  11. I cant imagine! I am angry for you!! Thoughts & prayers!! Today & everyday, from Missouri!!

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  12. I saw a link to your blog on Facebook thanks to I Love Liam Lyon. I am so very touched by your story. And as a mother of 3 beautiful miracles of my own I am angry for you. As I sat and read your posts my own tears fell for you and your family. I will pray for both your little boy, as well as you, your husband and the family. Children are our greatest blessing. And your handsome miracle should not ever have to deal with such things as brain surgery, chemotherapy, or radiation. No child should!!

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  13. As a mom of a complex CHD baby, I too know your pain. The pain that you cannot make it all go away or fix it or the realizatiom you are not in control. It sucks, and you deserve to be angry. You need your own emotional vent, and I think you wrote it well. I am still dealing with my anger or sadness on a regular basis. It does get easier, but it will never go away. Prayers to you and your family and that precious little baby. The best thing I did, was realize I'm not in control and try to enjoy everything I could / can (it doesn't work all the time, but it helps sometimes).

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  14. As the mother of 8 beautiful children and 1 being in the hosptial now fighting for his life I know how it feels to be angry!!!! Just know that little Gray has a lot of good people praying for him and that CHOP is an amazing hospital. I

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  15. Jackie,

    I came across your blog via a post on Facebook from Liam Lyon's page. It breaks my heart to read your story. It also hit close to home as a I realized we must be close geographically, as 2 of my 3 children are seen at AI duPont on a regular basis for a genetic (but thankfully not life threatening)disorder. I'm originally from Wisconsin, but have lived in Dover, Delaware now for 13 years. I have family members who have had fantastic and successful experiences at CHOP and I'm praying for the best! You are an amazing writer. Your posts evoked so many emotions; I found myself laughing and crying as you described your sons and of course Grayson's journey. I am praying for beautiful Grayson and your family. I hope you have the support of many friends and family members, but if you ever find yourself needing something, don't hesitate to reach out to all of us following your story.

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  16. I'm so sorry you and your family (especially Grayson)are going thru this ordeal. I'm sending prayers and positive healing energy to the whole family. I just want to suggest another MD to you. He successfully treats late stage and inoperable cancers (especially those in children) with a NONTOXIC therapy called antineoplastons (a naturally occurring peptide that controls cancer growth). His opinion may offer new options and new hope. Please go find out more for the sake of your precious son. Burzynskiclinic.com God Bless!

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