Survivorship ain't all that and a bag o' chips.

It's been a bizarre 24 hours.

Not long after dropping off The OffSpring at school yesterday, I get a phone call from the school nurse at Gregory and AnnMarie's school. She and I have a long history and I love receiving calls from her. Yesterday was different.

She was calling to give me a heads up. Over the Thanksgiving weekend, one of the kiddos in a neighboring classroom to Gregory had Scarlet Fever. What happened next still leaves me reeling. I had an overwhelming and visceral response to this perceived threat to Gregory's health. A metric ton of adrenaline dumped into my blood stream. My brain zeroed in, found the checklist in my database and went to work.

• How close is the threat?
• Check in with oncology.
• What were his last counts?
• How recently was his body under stress?
• How did he look/behave this morning?
• Will this child have infected any other students?
• Look up Scarlet Fever.
• How does it present?
• What are the symptoms?
• Is his pediatrician prepared to treat Gregory aggressively enough for his unique situation?
• If he does develop Scarlet Fever, is an admit imminent? 
• Who will care for the other kiddos if we are admitted?
• How in the H-E-DOUBLE HOCKEY STICKS am I going to handle something like this while going to school, myself?
• Don't panic. Get information. Breathe. Exhale.

All of this flashes across the membrane of my brain at light speed. I can feel my feet dig into the floor. My hands and pits start sweating profusely. My gut sinks and my heart races. I fight the overriding urge to go claim him from school, this very second. Without delay. The walls go up and I find myself in Warrior Mode.

After getting what questions I could answered, I start to come down. Start to. Then the shakes begin and I pop a giant headache. My pits drenched. Tears are threatening to flow. 

Shit. We have had months of bliss. Yet, my body remembers. It's automatic. I have no control over it. Really, I don't. 

Don't tell me Scarlet Fever is simply strep. Strep can turn into Scarlet Fever in people who's immune systems are less than normal. Hello? That is my kid. Will forever be my kid. Regular illnesses are no longer 'regular'.

My brain realizes that he will, most likely, be OK and never even get close to contracting this. My body and my heart need to catch up. I can't seem to shake the headache and I find myself weeping at the slightest lowering of my guard. As I went to sleep, last night, my neck and upper back ached like I had lifted weights all day. 

The threats are real, we cannot hide from them. I am really trying to live with a balance between being protective and being free. These things sneak up and take my breath away. I am learning how to parent and caregive to a bone marrow transplant/cancer survivor. Learning how to establish a trusting relationship with his pediatrician. Trying to figure out how to manage Gregory's bodily demands, demands that we have zero indication as to what they will be. It is an intricate dance. 

Then we have a moment. THIS is what I am forever fearful of losing. DEATH is my biggest fear. I know we are all susceptible to having this happen to anyone of us. Yet, there is something unique to having stared death in the face, manage to skirt it's clutches and realize that it is still waiting around the corner. No. I am not negative or morbid. I live in the brilliant light of life and gratitude. I also dwell in the dark places. We all do. 

I NEVER want to forget that belly laugh.

Covering you in love,
MindiTheMagnificent
~Momcologist

Healing deep wounds.

Sister, Sis, Sissy, AnnMarie~

Hello, darling. It's late at night, on a Monday in November, 2012. You are slumbering away, in what I hope, are sweet and peace filled dreams. I am just now, finding space in my heart to devote words, now and again, to nothing but you. I had intended on writing to you in this fashion, from the time that you were born. I originally started with old fashioned pen and paper. That was so very short lived. I have a tendency to freeze on paper. Life became busy, Gregory arrived and live became chaotic.

Then in February, just two weeks after your seventh birthday, Gregory was diagnosed with cancer. This you already know and feel oh so acutely. It was at this point that I all but abandoned you. My physical and emotional presence in your life ceased to exist, for quite some time. It is now nearly four years since then and I am just now trying to find my way back to you. It's not been easy.

Over the years, I am hopeful that we will be able to have frank conversations about what has passed and how it still affects our relationship and the woman you will one day become. I struggle with connecting with you. You need and deserve so much more than I find myself able to offer to you. I struggle with being the mom you want me to be and being the mom that I am. I sometimes feel like I fall so terribly short in your expectations.

You have a gigantic heart and free flowing, lofty dreams. I want to feed your heart and soul, but still keep you a bit grounded. There is plenty of my own baggage that comes along for the ride in our interactions. I want you to be a woman who is strong, confident, independent, loving, open, practical, with a touch of big dreams. Someone who not only follows her heart, but listens to it in the quiet moments. A woman who is not afraid to look herself in the mirror and say to her reflection: "I love you."

I wonder how the last four years have hindered that development. I wonder how I can show you that I love you. I wonder how I can offer you the security that you so desperately seek. Seven years old is such a tender age to be abandoned by your mother. It is such a young age to have your touchstone yanked from your life. Especially in a situation that pulls her to focusing 100% on your little brother.

At the risk of sounding harsh and unfeeling, I will tell you this: It was the only choice I could make. Given the same circumstance to repeat, I'd make the same choice. Even with the knowledge of hind-sight. Harsh, I know. It was not a choice that I had to ponder, either. It was visceral and innate. Gregory was facing death. You were alive and healthy. You had Daddy, Nana and Papa. Not to mention our extended Montessori community. While they are not a replacement for your mom, they were there for you in ways I could not be.

My heart and my head reasoned it through. It was better for our family for me to focus 100% on Gregory for a short time. Offering him the BEST opportunity to survive and recover. Versus a lifetime of the four of us living without him. It may not have been logical. I would like to think that my singularly focused attention to Gregory did help in his survival. The truth is, I don't know. I'm beginning to think that this way of thinking was my way of bargaining and appeasing my own guilt at having to leave you. Pleading with The Universe that if I sacrifice my relationship with you and Curtis, then we might get a chance to keep Gregory a little longer. I don't know, sweetheart. I can't look back with regret or question the decision that were made. In fact, I don't.

My biggest overriding feeling when it comes to you, is an ache tinged with grief over what we missed out on together. Half of first grade, all of second grade,a large part of third grade, most of fourth grade and now, you are in the fifth grade and I am beginning to find my way back to you.

I'm hopeful that by writing to you like this, I will also be able to talk to you now. I'm hopeful that it will enable me to be a stronger presence in your current moments. I cannot undo the past. Yet it is there between us. I can only support you now and be there for you when your heart crosses places that hurt.

When I pictured my family, I had always imagined having just one daughter. You. You are that one daughter I always wished for. Today, I only wish that the years had been easier for us. They weren't, though. We were handed this really crappy and hateful thing called childhood cancer. You suffered right along with Gregory. You and I will get through this.

Five minutes at a time.

I love you, young lady. With the fire of a million burning suns.
~Mommy

Your seventh birthday. February 5, 2009

Squandering is not an option.

Five slight fingers, a three inch palm. The trust of a child who knows he is loved and secure. My hand wrapped warmly around his soft little hand. Reminding one another that we are OK and we love each other. This bond between Gregory and I is strong and unique.

Gregory had an appointment today to have two of his upper teeth pulled, to make room for his front two adult teeth. The last time he had a procedure at the dentist it did not go very well. I'm hesitant to admit that the dentist actually made me feel a bit small and belittled Gregory a bit. Maybe we were overly sensitive at that point in time. Maybe what we have been through just plain makes us sensitive to certain things. This experience, combined with Gregory's history, contributed to a bit of PTSD today. For both of us.

As Gregory was climbing into the dental chair, the panic, fear and anxiety started to settle in. Thankfully the assistant today was perfection. She did her best to calm Gregory, but I knew he just needed me close. I did what I do best. I climbed right up into that chair, straddled it backwards, stroked his legs and feet, simply offering my presence. As they were applying the nose piece for his 'Happy Gas' I could see thoughts flit across his face. He asked about 'Sleepy Medicine'. Having been sedated only three weeks prior, things were awfully close to the surface. We assured him that today he would not need Sleepy Medicine, just Happy Gas to help him relax. Once the nose piece was settled, he started to cry and bravely wiped away his quiet tears. Taking deep breaths to calm himself. At this point there really is not much I could do to help him. I just have to let him work it out. Which he did, though it did linger for the rest of the day.

This patient and compassionate dental assistant was also in the OR on March 25, 2009 when Gregory had his pre-transplant dental work done. He had eight crowns and four caps placed that day. This protective placement of caps was THE BEST thing we could have ever done for Gregory's mouth health. As she was walking us back to the procedure area today, she confessed to having cleaned my teeth when I was small. It was a day of full circle memories.

The Happy Gas kicked in and he started chatting between the ministrations of the dental assistants. The numbing in affect, Dr Dentist arrived and gently removed the two teeth. Long roots and all. It was actually quite amazing to watch him perform the task. He was gentle and firm in the handling of those teeth within Gregory's jaw. After a few minutes it was time for us to go. Gregory picked out his prize and we left the procedure area. We gathered our coats and headed out the door.

Not being too sure about the expiration date on my Tylenol at home, we stopped at the store. As were were walking toward the store, Gregory had his little hand in mine. There was something so startling crystal clear in that moment. His sweet little hand felt to tiny in mine. Tiny, warm and secure. As I looked down at him, I had a wave of 'Don't forget this moment!'. This moment where we were both silently and subconsciously supporting and comforting one another. We were feeling reverberations of shared trauma. His upper lip was terribly numb and he was quietly talking with me about random observations. I couldn't tell you what they were. Only that his tone was very tender. A tone I've only heard him use with me during times of intense emotions. We were both feeling the past and the present.

He feels so very small to me today. I can't help but wonder what races through his mind during times like today. He was so terribly young during active treatment and his immediate recovery. So young to have to experience what he had to endure in order to have a chance at survival. Those memories and feelings lie dormant. Too young to process them and too young to really remember the details. Yet........ some part of him remembers. I witnessed it happen today, clear as day. So I continue to be his touchstone. The one to keep him grounded and secure.

What he doesn't realize is that he does that for me, too. If I begin to have a moment of selfish, silly anger, judgement, jealousy, pity or you name it, I spend a millisecond holding the wonderment of his survival in my mind's eye and nothing else matters. At this moment he is sleeping beside me. He still does not sleep alone. He will only fall asleep with me at his side. Selfishly, I'm not ready to give up this little luxury. There will come a day when he will not want to sleep next to his Mommy. Probably about the same time he quits calling me 'Mommy'.

For now, I will take what is offered and try to engrave these moments into my rememory. The little hand in mine, the cuddling next to me, the wanting to be close together, the sweet kisses and perfect squeezes. These things have been hard won. I'm not about to squander what's right in front of me.

Crying, AGAIN and thankful.
~MindiTheMagnificent
Momcologist

Tight in a bud.

I don't know how to talk to you. Should I be defensive, offensive or simply open. Aggressive, respectful, loving. I don't know and it's killing me, a little bit, everyday.

I want to be angry. I want to rant and rave. Spew words that have been trapped for entirely too long. Open my chest and fling this heart at your feet. It is so broken. It is tired. It needs a break and it needs to grow.

I have been respectful, given you space. I have been patient.

My body can't take it anymore.

You won't let me in. This is what hurts the most.

I'm tired of being the one to bend. The walking on eggshells. Being left to wonder 'what's next' from moment to moment, day after day, week after week.......

I'm ready to plan for tomorrow. I'm ready to think about next month. I'm ready to consider next year.

I'm growing. I'm healing.

I'll always be a bit broken. I'll always live out loud. I'll always need to be loved and know that I am loved. I'll always ask for more. I'll always question everything. I'll always plan for the worst, but expect the best. I'll always see the best in people. I'll always avoid conflict. I'll always live in love.

The day is not here, but it is quickly approaching.

"The day came when the risk to remain tight in a bud was more painful

than the risk it took to blossom." ~Anais Nin

Comments are closed.
~MindiTheMagnirficent
Momcologist

Drive-by

Super quick Friday Night Drive-by.

AnnMarie has her craft fair tomorrow. she is putting the finishing touches on her items, creating signs and preparing a bit for work to keep her occupied while at her table. She has a friend staying the night and she will sit with her all day tomorrow to keep her company. THAT is a great friend.

Looks like Gregory will finally get his much asked for Red Wallaby this weekend.

For kicks and grins, I leave you with animated OffSpring. Yes, we are pretty much goofy all the time.




Take a moment or two this weekend to show someone you love them. You never know.

In honor, in memory, in defense.
~MindiTheMagnificent
Momcologist

Bullets. The only kind I love.

It's been a long, full and emotionally taxing day. What does that mean for YOU??

The simplicity of bullet points.

• Gregory had a fabulous day at school today, although quite ravenous. Illness, be gone!
• AnnMarie is frantically getting ready to sell her wares at a Vendor/Craft Fair at her school on Saturday. Need some new jewelry? Drop by Jefferson Elementary between 9am & 4pm.
• We decided today that she will have a St Baldrick's donation bucket at her table! 
• Curtis is navigating relationships with the opposite gender and has willingly and thankfully listened to what I might have to say to help him out. Ye gads, he's a keeper! 
• Washington State has passed a measure for Marriage Equality! *squee*
• I register for school in the morning. Seeking my BSN so I can work bedside with kiddos and their families. (see how I snuck that one in there)
• We had our first snowfall for the season today and Gregory was beside himself with glee. That kid is LIVING life.
• Once again, essentials oils make it all better. Love me some Two-Sisters Apothecary
• I've happily fallen down the rabbit hole that is Heritage Makers. 'bout damn time I started doing something with all my digital images! Flickr really could care less about the people I love.
• The fact that I need a wardrobe over-haul became a bone of contention today. Someday. 
• People are good. People are loving. People remember you. 

"A bell's not a bell 'til you ring it, A song's not a song 'til you sing it, Love in your heart wasn't put there to stay, Love isn't love 'til you give it away!" ~Oscar Hammerstein II

I'm off to find Dreamland. Catch ya on the flip side.

In honor, in memory, in defense.

MindiTheMagnificent

~Momcologist 

How's The Greginator?

It's been ages since I have done a proper update on Gregory. Shall we begin??

To say that Gregory has been thriving would be a severe understatement. He started first grade this past September and has not looked back. His state of heal continues to flourish, while I still hold my breath.

He had his first quarterly oncology appointment in September. We met with his endocrinologist and discussed what was next in terms of his adrenal function. His oncology appointment was uneventful. Which is a fabulous thing. Through endocrinology we scheduled an ACTH stimulation test to check the function of his adrenal glands. He had been tolerating daily living without hydrocortisone supplementation, yet we were not sure how his adrenals would function when put under stress. ie, illness or injury

We went in on Monday, October 15 and he was given a drug through his port that would replicate a stress situation. Prior to, a blood sample was drawn to measure his 'normal' level. At the thirty minute mark, another sample was drawn to determine his response. Results came in the next day and they were down right perfect. Baseline was 4 and post infusion it went up to 21. Perfect response. Which indicated that his adrenal glands had returned to fully functional. A-may-zing. Seriously.

Also? This was THE LAST time that Gregory would be accessed through the port in his chest. The last.

We had the OK from oncology to get that puppy out. By a stroke of coincidence, there was an opening the morning of Monday, October 22nd. If you had not already known by now, Gregory is now port free. Completely device free, actually. Since he has a paradoxical reaction to Versed, they simply sent him off to dreamland via gas, then placed an IV in his hand for the procedure. It did not take long and Dr McCarthy was able to get the line out in it's entirety. She did a fabulous job of closing the incision and even excised the scar from the original placement before closing it up. It is healing beautifully and hopefully he will only have a slim, roughly 1 1/2" line of a scar. Thank you to the GVHD gods that there has been zero evidence of GVHD.

He stayed home on Tuesday for pain management and was off to school on Wednesday with his port in a container to show his classmates. Once again, they all thought it was pretty slick.

We have been chipping away at getting his re-immunizations finished. He only has three remaining, yet two of them I am quite scarred of how his body will react. On Friday, November 16, he will receive Varicella, MMR and Menactra. Yep. Two live virus vaccines. Holy crap. Honestly did not think we would get to give these a try. Crossing my fingers that he will have a mild reaction and bowing to all that is sacred that they actually take and give him sufficient coverage for immunity. Please, please, please........

You are going to love this one. A few weeks back, he lost BOTH of his top front teeth. On time. Developmentally on time. We are still not sure how his adult teeth will look when they fully arrive, so we are monitoring them like crazy. We do know that he does not have enough room and the neighbors to his lost baby teeth will be removed by the dentist this coming Monday the 12th.

Too stinkin' cute, if you ask me.

It has been fascinating to watch Gregory 'reclaim' his body. It's not conscience and so very subtle, but there has been a difference in him. A quiet pride, if you will. He is taking on a bit of age appropriate independence, but it has such an air of confidence. As if he is wearing a huge badge that exclaims: "I GOT THIS!" Which today, in this moment, he totally does.

Yesterday when I pick him up he had a bit of laryngitis. This combined with his demeanor let me know that he was working on something. He was uber compliant and lovingly did everything I has asked him to do. Not 100% completely normal behavior! He started to develop a cough and close to bedtime it took on that barking sound that comes with croup. My sensors went into high-gear. Thermometer, Vicks and rest. Thankfully he slept soundly through the night, stayed home today and it did not worsen. In fact, he will be going to school tomorrow. These days, his body is showing us that he is OK. His spirit is showing us that he is fabulous.

I take each new development with cautious optimism. Preparing for the worst and expecting the best. I made the phone call today to oncology to find out what his 'illness protocol' is, now that he does not have a port. The return phone call was both a surprise and an expected response. The verdict?

TREAT HIM LIKE THE OTHER OFFSPRING.

Meaning, if he has an illness, treat it from home. Which means he can have Tylenol again! If I am concerned about an illness, take him to his PEDIATRICIAN. If there is something after-hours and requires an ER visit, I don't have to call oncology first. Yep. We just cut a huge slice out of his medical routine. This will require a mental adjustment from me. The first time we get to test this, I will panic a bit. So will his pediatricians office, but I am well prepared for that scenario. His last round of immunizations was kind of a mess and I learned a lesson. I will forever be Gregory's Living, Walking, Talking Medical Record. *sigh* I will tell you that he is excited to have an excuse to visit our new Pediatric ER. It is due to open soon and the crazy kid wants to try it out. 'Cause, "Mommy, won't it be so much better and easier?"

In December he has a full eye exam, hearing test and oncology. Possibly another round of immunizations, too. I feel like there is something else, too, but I can't seem to put my finger on what it could be. Maybe it's nothing. I only think it's something because it doesn't feel like there is enough.

What did I tell you. He is doing so well, today. I am taking it with such gladness, awe and wonderment.

Today? Gregory is grrrrrrrreat!
MindiTheMagnificent
~Momcologist