Potential.

Whenever I was still pregnant with Natalie, Mike and I bought her a little white dresser to store all her little baby clothes and extra baby blankets and all the teeny tiny socks...
It was one of the first things we bought for her nursery and that alone was exciting to a new mother.
I remember the peace I felt folding her many freshly washed newborn onesies and placing them each neatly in the drawers. I remember the hopeful daydreaming about all the things she could do and become. Id fold her blankets and long for the weeks ahead when I could wrap her tiny perfect self in them and hold her close.
Maybe she will love to dance like me. Or perhaps love science like her father. Maybe she will play sports or become a writer or doctor or counselor.

All the potential she had in my dreams...

As she got older, hanging clothes was easier and one less thing to worry about so the dresser remained empty minus some of those old baby blankets.
There was a time a few years ago we gave away that dresser. A friend needed it and we did not so for a while it belonged to someone else. When they no longer needed it became ours again but Natalie didn't really have many clothes.... but we needed it.

I cried putting the medical supplies away. I cried like I did the first time we were told Natalie was different. I cried from a deep pain that I hadn't felt in so many years...
This dresser is for baby clothes that were bought for a child I never had. Natalie is nothing like the child I dreamt up. Its unlikely she will ever be a doctor or scientist and it pained me to remember how hopeful I was.
It hurt to see gauze and syringes where her "future ballerina" onesie use to be.
It hurt to be reminded that our lives are different and that it wasn't the plan.

But more than anything I felt pity and embarrassment for the person that I use to be.

Yes, grief is part of the process and I will admit openly I had some very dark days. I wasn't always the determined and positive mother Natalie needed and deserved me to be. Many days I put her down for a nap and spent the entire time during it crying, feeling sorry for both her and myself. This wasn't what any of us asked for and I was not looking forward to watching her struggle through life.

But time went by and I cried less and less. I began to appreciate things that many mothers don't notice about their children like extended eye contact and intentional gestures with individual body parts. I
started to realize that Natalie wasn't struggling through life, but dancing through it.

When I was finished unpacking the supplies, and finished with my crying, I put Natalie on my lap and told her I loved her and I know she understood me. she leaned into my arms for a hug and we just sat there while I appreciated everything about that moment. And it was truly lovely.

A while ago I took all the medical supplies out and was able to begin putting Natalie's freshly washed clothes into the drawers. She has been in remission for 175 days and we are enjoying every single second of it. I'm so thankful for her life exactly how it is. Remission, Angelman Syndrome, Craniosynostosis.... She been given a second chance, thanks to St Jude, and as I folded her not so tiny clothes I allowed myself for the first time since she was diagnosed to daydream about all the things she could become.

3 Weeks. Refelctions from the finish line.

I could accurately describe the last year and half as the season I cried myself to sleep. Cancer treatment is a fight for life & there is nothing like watching your child struggle through it. If that statement sounds like the start of a whimsical, heartfelt poem, I can assure you it isn't.

During Natalie's treatment there were a few things I kept track of that Id like to share with you. Its been a long road and part of the joy of seeing her come through the other side is the memory of where that road took us.
From diagnosis day to remission day 1 was 544 days.
Natalie received 325 doses of chemotherapy in that time. If that doesn't seem like that much, I will put the toxicity of these treatments into perspective for you.
It took a regular regimen of 27 different medications, not counting the actual chemotherapy drugs, to counter the MANY side effects of her treatment. From stomach problems (which we are still dealing with and will for a long time) all the way to severe skin rashes that looked like her flesh was burning away from the inside.
At one point she got an extremely complicated infection that took months of daily injections to counter. 430 hours worth of injections to be exact.
Those antibiotics and other medications would wreck her body and cause her to develop C-Diff 11 times. If you don't know what that is, do yourself a favor and NOT google it. Its pretty gross.
In her time at St Jude Natalie was admitted into the hospital for a total of 181 nights. (most of the treatment is outpatient treatment and we go back to housing at the end of the day unless there is a problem) The longest stretch being 29 days at the worst of her infection. It was during that time that she lost her ability to walk, sit up unsupported, eat and drink or make any sounds verbally.
Natalie went through 28 days of radiation to her entire abdomen and was sedated 39 times.
She received blood/platelets approximately 48 times. This is not counting any blood she was given during her 3 surgeries, because we were not told the amount given, just that it was necessary.
Natalie is still on medications to counter some of the longer lasting side effects & we have been given the lengthy and depressing list of things Natalie will have to deal with forever.

But, its just the price you pay.... Her life is so valuable...

Every child's treatment is different and even though Natalie's was relatively long, there are children who have double, even triple (or more) the days. Everyday I think about the people we left behind in Memphis. Friends who still fight. Who still pray more than they do anything else. People who are waiting for a miracle... Parents who we grew to love that are now and forever grieving the loss of their precious child... People who are walking into the hospital for the first time... Who are breathless from the same anxiety, the same gut-punching fear that we felt for so long.

For 544 days it felt like I was holding my breath.

Some days were good. Some days were not. All bad days had moments of joy & all good days had moments of stress, fear and sadness. Some days I felt numb. There were many times I just had to take a second, with my hand on my heart, to tell myself I could keep going as long as my  heart was still beating, even on the days that same heart was breaking. For this child I will do anything.

The moment we found out Natalie no longer had any evidence of disease... I lost my composure. I stomped my foot several times and clapped as I whimpered "Oh God Yes" in a way that is not at all a reflection of the strong woman I have painstakingly become. But, I think God is honored by those honest moments. The many, many times when complete and well formed sentences were replaced by pure emotion. Sometimes agony. Sometimes joy. Sometimes a weird combination of the 2... There are no words to accurately describe those feelings.

It was hard to leave. We hugged everyone on her Oncology team and said our goodbyes the same day. A hug just seemed so anticlimactic. How do you just say goodbye to the people who worked so hard to save your daughters life? How do you thank them and it be enough? How do you move on from that miracle?

Its been 3 weeks.
Natalies hair is growing so quickly and she is getting a little weight back on her body.
She moves with a spark, and we are all enjoying being able to breathe again.

3 weeks down. A lifetime left to go.

Remembering The Valley

We are coming to the end soon.
...the end of the treatment we set in place a year and half ago.

Natalie has scans scheduled for the 10th of February and we hope to receive the all clear. We don't really know what will happen if that's not the case...

I remember when we set this plan up. I remember every second. Every fear. Every crack in my heart. I remember asking no less than 40 questions and Mike doing the same. I remember feeling things I couldn't explain with words.

I remember when our 6 month plan turned to almost 2 years. I remember when Natalie almost died of sickness only 3 months into treatment.

I remember the tough choice we made to put Natalie on anxiety medication because she was so stressed she would freak out if someone so much as uncrossed their legs while watching TV.

I remember there was a moment when I looked at Mike and realized I was angry with him. I was angry that he couldn't fix this. I was angry that we were so powerless. I was angry so... that I didn't have to be sad... and as soon as I realized how irrational that was, and I let it go, I cried for hours. That deep ugly cry that no movie scene can ever seem to do justice.

I still cry like that sometimes.

I cried like that the first time we lost a cancer friend.

And the second time... and third... and too many more times after that.

These strangers became family living together in housing for over a year. I don't know what survivors guilt is suppose to feel like but, I imagine its something like this. Like watching amazing, innocent little kids get sicker and sicker while watching yours get better. Knowing you would give your life for theirs in a heartbeat, but also being so grateful for every single second you have with your own precious child. Thinking..."that could have been my baby..."

I remember when Natalie got vocal paralysis over night While she was still healing from surgery. We didn't know she had completely lost her voice. She was fine the night before...  Late morning I check on her thinking she is still asleep; chemo makes her tired.  I go in and find her soaked from tears, lip quivering, eyes scared, and her in obvious pain. She must have been like that for hours. But she made no noise, so I let her rest. She wouldn't even come to me. I had let her down and she didn't want my comfort. I have never in my life felt more pain than in that moment, and thinking about it now makes me physically sick. She was afraid and confused, trying to scream out for me but nothing would come. Like watching a movie with the sound on mute.

And now I'm shaking.

I remember in the first week I saw a girl a little older than Natalie playing with her siblings in the play area. She looked so happy and joyful playing there almost as if everything were normal. Then she paused her playing, took out a green bag and threw up for several minutes, then went right back to playing. No one flinched. Her parents didn't jump out of their seats. She didn't cry. I remember realizing that day that we had a new normal. sometimes I think about that little girl, probably 8 or 9 years old, when I hear a child complain about something like putting their shoes on...
...maybe I'm a little jaded.

I remember all these things and more because I have nightmares about them. I sometimes have dreams that Natalie is throwing up and I wake up and in my sleepy state I don't know if its a dream or if I only woke up because I heard Natalie, on the baby monitor, actually throwing up. Mike has mumbled many things in his sleep like... "are you checking on Natalie?" or "did she get sick?" when I roll over in the bed. I can't remember the last time either of us really slept.

Every sniffle is a cause for hourly temperature monitoring, a warm bath and a call to the Dr.

I wonder if it will always be like this. Does the stress and anxiety ever go away?

As a Christian, people often tell me not to worry about the future. God has a plan for goodness. Have faith.... and I do. I have faith that Gods plan will turn out to be bigger and greater than anything I could have imagined. I know all things work for the good of us who believe in Him. I know I should laugh without fear of the future and all that other Proverbs stuff.
But here is the thing....

Knowing the future is in Gods hands, and knowing Heaven is real and believing with my whole heart that He loves my family and that he wants good things for us.... it doesn't mean the path to that wonderful future isn't going to hurt. Because it does. It hurts.

It hurts so much...

365 day nightmare

I woke up to sounds of Natalie making fart noises on the baby monitor, as I often do. When she giggles afterward its just pure joy. Sorry Folgers, this is the best part of waking up.

I started the "normal" morning routine. Get dressed, pick out Natalie's clothes, grab a clean diaper and wipes, change her diaper and then move on to breakfast.

But..

During the diaper change I noticed a large (I mean LARGE) lump in her lower abdomen off to the right side a bit. That DEFINITELY wasn't there last night. So I start my frantic checklist and try to talk myself off the ledge a little. "Cant be constipation because she's 'regular'". "Could she have eaten something and it gotten lodged?" "What could she swallow that's that big though..."

All this panic was amplified by the news I got the day before. You see, another AS (Angelman Syndrome) child in a neighboring state had drown in the bayou near their house after getting out of the home during the night. I was really devastated. I couldn't help but think "if that had been my child" and how I would feel. How broken that mother must be feeling...

I remember thinking that it was the worst way to lose a child. So sudden. She must have been so afraid... I thought, if I had to lose a child Id want to know. Id want to be able to say goodbye. ld want to enjoy the last days the best I could.

I have no idea why the thought even came to my mind. I immediately put it behind me and went about my day...

Naturally, when seeing the large lump out of no where the very next morning, my first thought was cancer.

I didn't want to even say it out loud. I didn't want to think about it too much even because maybe if I ignored the possibility then that wont be what it is.

Logical.

I had so much guilt.
I had said I'd want to know
I would want to be able to say goodbye
I wanted to spend the last few days together....

I had brought this on myself. Why would a mother even think such a thing?! It must be my fault. Had I unintentionally wished this on my sweet girl?

It was still really early so the Dr. office wasn't open yet. Our pastors wife is a nurse and good friend so I sent her a picture of Natalie's lump to see if she had any ideas while I waited for 8am.

She asked a few of the Dr's and other nurses and concluded I should "definitely take her to the Dr.". By the time I got that text I had already packed the diaper bag & was putting my shoes on. I called the Dr. Office at 8am while sitting in their parking lot. No one seemed obviously  concerned & it did put me at ease some. Although I suspect it was just a brave face being put on for our benefit. 

I cant mention cancer.

Do not ask.

Do not think about it.

Its definitely not cancer.

Your just paranoid.

This is your fault.

We were sent to the Gastrointestinal Surgeon in town. He did an xray.

Nothing.

We would have to come back the next morning for a CT scan.

& the nightmare begins.

I cant believe it has been a year since this day...

We didn't get the actual diagnosis of cancer until several days later during a biopsy, but her Pediatrician called the night after the CT and told us what she had found out.
It was probably a tumor.

Rhabdomyosarcoma.

As most of you know,
She was right.

Scans: An update on how treatment is going

When we found out Natalie had cancer back in August 2015, it had spread throughout her abdomen so much that one of the Drs at St Jude commented that he was amazed she was able to walk comfortably. I think back to those days often because it reminds me how far she's come. Progress for Natalie never shocks me. Shes always been a "defy the odds" kind of girl. She's always been brave because she's always had to be.

Thursday last week she had both a CT scan and an MRI done to check the progress of her cancer treatment. All of the main masses that they could find during surgery were removed in February and so having had chemotherapy even after that we were hoping she would get NED (no evidence of disease) status today when I sat down with the Drs to review the findings.

Sadly, that was not the case.

Natalie still had what looks like a tiny little spot that's "lighting up" in her lower left side. Its very small and there's a chance its not even cancer but a cluster of tissue or any number of other things. But, since we cant just go in and see, we have to assume its cancer.

Her doctors were extremely excited. But, I just felt sick. I still feel sick. Mike couldn't be there because hes back home working so, it was just me.
Alone.
Trying to be brave for Natalie.

Her doctor pulled up a side by side for me because he didn't think I was excited enough. Seeing the difference in her scans now vs her scans when we started definitely made me feel better. But, the cancer is still there.

Here is a photo of the side by side CT scans.

The left is the recent one. The small little greyish green x is the tiny little cancer spot. The right huge X is just ONE of the many tumors that had taken over her abdomen.
To someone like myself who cannot "read" imaging very well, the one on the right LOOKS clearer but, that's just because the tumors were blocking all the organs and bowels (etc.) from view. Some were even sort or squished to the sides because the tumors had claimed the space as their own.
The difference is astonishing...

For over 10 months its felt like Natalie has been under attack. As a parent that's extremely hard to just accept and live with while waiting for something to change...

Her body is still under attack.

So we continue to fight.

We continue to pray.

We just continue on because.... what else can we do?

How its going..

Seems like every time I turn around someone is asking me for an update on how Natalie is, how treatment is going or how Mike and I are holding up. I have sat down many times to get out how I feel in writing but it just hasn't come. None of the words seem to do justice to whatever I'm trying to say. It has occurred to me that the words probably don't exist at all. Maybe its good that they don't. I am now realizing how much meaning has been lost in words like agony or joy. Words I have used before, but never truly understood...

 

Its been two months since we found out Natalie has cancer. Although, we got the phone call from her Doctor a few days before who said it was likely to be cancer...

 

I remember getting the phone call, Not so much exactly what was said, as the emotions I felt.

 

Sitting on the floor of our closet.

 

Phone muted while the Dr. explained some of the information she was given.

 

Letting out the ugliest, weakest whimper thinking I might die right there from pain.

 

I was jotting down key words to google later.

 

Her Pediatrician is so positive and loving that it was hard to believe we were discussing what we were...

 

When Mike came in the room after the call was over he was holding Natalie.

 

"What did she say?"

 

I just lost it.

 

"Cancer. She thinks it may be cancer, Mike. I don't know what to do"

 

Usually when I'm falling apart Mike says everything will be okay and I always believe it. But this time he said nothing. Our whole world was falling apart. Surely this is the worst day of our lives.

 

A few weeks passed and we adjusted pretty well to being at St Jude. Originally we were told that her treatment would be around 6 months likely, but once her results all came back from biopsies and scans and bone marrow samples, the cancer had spread and we would be looking at over a year, minimum. because of the spreading Natalies chances of survival were pushed from 90% down to 40%. Suddenly we have a new worst day of our lives...

 

Since starting her treatment Natalie has struggled with several side effects of the chemotherapy. Along with losing all but 5% of her hair, she has vocal paralysis which makes her unable to drink and eat soft foods. Its been crazy. Mike and I have learned so much we never wanted to know since coming here. We can change a central line dressing in just a few minutes. flush lines. give meds. hook her up to fluids & give daily shots to counter the drop in her immune system. In less than 2 months her bed time routine has gone from 10 minutes to almost 2 hours...

 

But its not all bad.

 

I feel like I'm expected to cry all the time or to say that these 2 months have been nothing but pain and suffering and our lives are horrible. But, cancer has not taken anything from us. In the last 2 months we have spent more time as a family than we ever have. We have cried from joy as much as we have pain. We have appreciated one another in a way I didn't think was possible under these human conditions. We have enjoyed the sunshine at the park & have gone to the zoo several times. We recognize that everyday could be the last day & fully take advantage of that time as a family.

 

It may sound crazy but I can FEEL the prayers. Like a wave of peace when I need it. God is surely working on something in our lives.

 

The support has been overwhelming. Natalie truly is a kid that everyone falls in love with. Nurses have taken their breaks in our room just to be near her. She just gives off a joy that can only be from God himself. It certainly didn't come from me...

 

Financially we have been very blessed, and haven't seen any hardship from this journey yet.

 

This post may be a little... random in places. I cant apologize for that because its just a reflection of how my life and thoughts have been. I do get angry and have to remind myself that cancer is not Gods fault. I do have moments of weakness when I just cry and cry, usually for the weirdest reasons... But Natalie is strong. She makes me strong.

 

The cancer is shrinking. The Oncologist mentioned that it was shrinking at an "above average rate". It doesn't surprise me. All things work for the good of those who believe in Him.

 

 

^ The left is before Chemo and the right is after 6 weeks.

Major Shrinking!!

 

^Natalie being so patient while a nurse accesses her

central line for routine labs.

 

^Natalie handling her (temporary) NGtube like its nothing.

Champ right there!! 

Dear Cancer

Cancer,

Im not sure what made you think it was ok to storm into our lives this way but its time for you to go. Leave and never come back. If it seems like Im angry, its because I am.

When you leave you will take nothing from me. You will take nothing from my family.

You will not take the joy from our household. You will not take laughter or smiles from our faces. You will not take memories that would be happy and make them sad. You will not take our faith. You will not take away our friendships. You will not take away our bond. You will not deny my child an education. You will not steel hope away & you will not take my daughter.

I just met you, cancer, and I hate you. Truly, I do. It would be much easier for you to leave quietly, because my daughter is a fighter. You will lose cancer. You will lose. In the name of Jesus, you will lose.

-the angry mommy