The Calm

3/8/17

My son,
You have impressed me so much over the past few weeks.  You have shown a humble strength. I wish more than anything that you did not have to face such a difficult season so early in life.

In Feb you had another strong reaction to a MED that required it to be replaced with something your body could tolerate.  Unfortunately, the new medication required longer and more frequent doses. Then we were informed that there was a national shortage of another one of your medications. This MED was normally administered through your port via an IV. Now it needed to be delivered through a Intramuscular Injection. So every other day we had to bring you in to get a shot in one of your thighs. At first, with reason, you were upset. But as you have down throughout this season, you adapted.

This month we also have other small complications.  With each week, it was getting harder and harder to collect blood from your fingers.  So they had to try multiple fingers to get the sample.  Again, you adapted. As you know, with every office visit, you get pricked on one of your fingers to collect blood to test your levels. If your levels are within a certain range, the chemo treatments continue.  Well your blood has not been bouncing back as quickly as hoped. You have received multiple blood transfusions and platelets. You have had to spend countless hours just siting around the hospital in quite frustrating.

On the bright side, you have had a nice break from chemo that resulted in much needed weight gain. You have been well enough to even enjoy a rare night out for dinner with your cousin.  It has brought your mother and I joy to have some semblance of our little boy around the house again.  The sound of you laughing and playing with your toys now has a whole new meaning for us. Also, I bought you a leather bound journal for you to capture your thoughts, frustration, and desires for the future.  You and I have been filling it with jokes, P&W song lyrics, promises from the Bible, and stickers from the hospital.

I wrote an inscription on the first page that could not be any truer my son.

I am certain that God could have given you a better father.
However, I doubt that God could have given me a better son .

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Monday

1/30/17

Baby cries and toddler pleas surround us today in outpatient.

A few came from you today when you were told that your port could not be used today to administer your chemo. You were getting a shot. You brushed your tears aside and requested your Ipad and proceeded to get lost in your Star Wars Lego game.

An hour later, a platelet transfusion begins and you are passed out from the Benadryl pre-medication. I am somber, recalling a conversation we had just before you became drowsy.

Mom: Seth, how can I help you through this today?
Seth: What do you mean? Nothing helps me.

Mom: I could hold your hand, breathe with you, try to distract you…
Seth: No.

Mom: Maybe, you want me to let you handle it in your own way?
Seth: (nodding)

Mom: Just know that I’m here and at any moment I will do whatever I can to help you.
Seth: Okay.

What an unbelievable journey this is for you AND ME! Emotions flood through – sadness, fear, anxiety, disbelief, anger. The worst is that I absolutely have no control over this.

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Today’s battle

Seth,

Today a nasty reaction overcame your body. Within 10 minutes of chemo, you knew something was wrong. You began to scratch and the nurses ran to your side. Seconds passed and you were experiencing an overwhelming, uncontrollable itch throughout your entire body. You were writhing and groaning. I had to watch with strong, sturdy eyes as you pleaded through numb,swollen lips, “make it stop!” I displayed not one ounce of pain or worry. Deep inside, my heart crumbled.

As soon as you realized what was happening, your anxiety heightened and you began to scream, “It’s a rash!” as you stared at your red hands and little tiny bumps forming on your arms. The excitement of the situation caused you to vomit several times and doctors now began to swarm. I had to back away to make room for them all. Deep inside, a knot formed.

Because of the superstar nurses you have, you were given Benadryl and Zofram through your port IV despite your inability to stay still. Everyone made it their priority to reassure you that they stopped the chemo and this will be over soon and the medicine will start to calm the hives and itching. I held your hand and wiped the sweat from your forehead. Deep inside, I held my breath waiting….

Finally, a calm exhale was released from your little body and you settled to sleep.

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You were monitored closely for the next 5 hours while receiving platelets and blood transfusions.

That night we went home and you felt fine. You begged for your cousin to come over so that he can distract you from the awful day you had. Considering that it was late and a school night, we agreed that it would be best to facetime and that’s exactly what you did.

 

Fortunes …

My son,
This week your ANC was strong enough to start again your CHEMO.  It has been so good to have you home and out of the hospital. Even better is that you have had a nice break from taking any meds at all. We still have to coerce you to eat, but you are eating.

As nice as it is to see you back at home, you are not the same.  You are not as playful and you’ve seemed to have lost your interest in just about everything.  I can also tell that you are feeling more than you are letting on by little comments you make. I brought home some fortune cookies this week.  We use to love opening them up together to see what your “fortune” was.  This time, when I handed you a cookie to open, you said you didn’t want to.  When I asked why, you stoically said that it is not going to say what you want it to say.  That it is not going to say “You don’t have to go back to the hospital.”  There was really nothing I could say.

But this week there have been good moments as well.  You googled “things to do in Japan” and together we all read about castles, temples, and other attractions that you would like to visit once you are done with this. It was nice to see the flicker of hope again in your eyes.  It was also wonderful to hear you laughing with your sister as you guys Facetime-d and played Mario Kart 8 & MineCraft together.

Tonight, as we laid you down to sleep, your mother and I sat on our bed listening to you sing yourself to sleep. You have such a sweet little voice. For just a moment, we felt like our little boy is still there inside you and you are going to be ok.

We love you son!

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Respite …

ˈrespət, rēˈspītnoun

a short period of rest or relief from something difficult or unpleasant

My son,
Today I finally was able to see glimpses of my little boy.
It has been almost
  • 24 hours since you have not violently gagged or complained about stomach pain.
  • 48 hours since you spent most of your day sleeping or laying still on the couch.

I can not adequately express how overjoyed I am that for the time being you do not have to take ANY medication.  Although your CHEMO will start again soon, your mother and I have to make sure that we enjoy these moments as much as possible.

On Monday, your uncle, aunt, and cousin came over to visit.  You played and played with your cousin.  It almost felt normal, but the mask you had to wear kept us all anchored to reality.

Last night you sang yourself to sleep. We have not heard you do that in so long. Today your Grandpa watched you for the first time.  You had a very good day with him.  Lots of talking and laughing.  Plus you were actually able to do your studies today and EAT (sorta).

When I got home we played MARIO KART 8 (thank You Rebecca & Alex) and laughed some more.  Your smile and laughter is something that I will never take for granted again. Your mom arrived shortly after and she joined us.  She whipped us of course, but we had fun none the less.

Friday we return to the doctor’s office to check your blood levels again.  Once you are “strong” enough, you will be scheduled for 4 straight days of chemo. Two weeks in a row. The end of this cycle can not come fast enough.  I will miss the way you’ve been this week.

Love you my son ….

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Holding on/off

I have been holding on to this post. A post for the new year. A post full of great news, new beginnings, and hope. A post that would make all of its readers smile with relief and cry with happiness. Deep in my heart were words to be typed about how our release from the hospital was the medicine my son needed and the break he so badly deserved.

I have been holding off on updating the viewers of this story in an attempt to save them from reading about Seth’s last 4 days home. I wanted to save you from knowing about his unrecognizable appearance – from his shaved locks to his obvious weight loss. I wished so badly that his days of sleeping 80% of the day away were something we left at the hospital. I wanted to wait until the vomiting and refusal to eat had gone for good. I didn’t want to report that the wonderful toys and gifts he received for Christmas remained packed in the bags we carried them in from the hospital.

For those of you interested in his story… the good and the bad… I will hold on to hope and won’t hold off on this update.

Seth,

Every day is unknown, unpredictable, and heartbreaking. Your dad and I never know what you are feeling, thinking, or want. Maybe you don’t know either. One minute I see you comfortably watching an episode of Wild Kratts on the couch, the next minute you just want to be in your bed. One time I saw you walk into your room, open your case of superheroes only to sigh and close it again. One morning you woke up full of conversation and we all felt so relieved, only for it to abruptly end before lunch when you asked to go back to sleep. We try a million times a day just to make you smile. I think we have succeeded twice and maybe once was for the camera. Yesterday, you said, “Thanks, mom” and when asked what for, you said, “I know what you are trying to do,” We can not offer anything to you that won’t make you gag or throw up. Your favorite meals and snacks are despicable to you and all discussion surrounding food and eating results in upsetting you. All of the sudden, it is chore for you to take your medicine. What you were once so praised for by the nurses is now a morning and evening struggle every day. Yesterday you woke up from your nap because you had a nightmare. You said, “I don’t want to talk about it,” You have told me on more than one occasion to put all your toys away because you don’t think you will be able to play with them again. Academic activities and tasks that were once so easy, have now become exhausting and yet another source of frustration for you. This is our life. This is life with lymphoma. You have been through the wringer, my boy, and this is only the beginning of month 3 of 24.

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Last night we went through our 2016 blessings jar, a tradition I began at the beginning of this year. Little did I know how very much we needed to be reminded tonight of our blessings. As we read the words on each folded piece of paper, we knew we stopped adding to that jar months ago. We knew that as we sat there smiling about our trips, our adventures, our achievements, and our simple happy life – that things were different. Our 2017 jar would not have the same words written on pieces of paper. We asked you if there was anything missing from the jar. You said, “… all the people that are praying for me through my trial,” It’s amazing how in such a short period of time, you have had to mature so much. Analogies of just 10 weeks ago utilized to get you through the first cycle of treatment no longer cut it. Doctors and nurses don’t whisper through words, pull us aside, or give us the “kid-friendly” version of anything anymore. You are part of every conversation, every discussion. Your bliss-filled, carefree world has been darkened by lymphoma and you have been forced to mature quickly. You are brave and tough. You are taking every hit like a champ and doing your best to stay strong through it all. You are honest and you don’t cry when things are hard. You are impressing everyone with your strength and are helping your Dad and I every day. I forgot to write something in the blessing jar. I forgot to write, “Seth’s courage”

Love you so much, my beautiful boy

 

 

Helpless

My son,
It was been a long 12 days since you were admitted into the hospital with a fever.  Since then you have been battling so much everyday.  Nothing has made me feel so helpless as watching you take medication after medication without relief for you. Worse, then there is the medication you have to take to combat the effects of the other medication that is supposed to make you better.

I see the strain it is taking on you.  You are such a sweet boy and I know that you just try to deal with everything as best you can.

My heart breaks with every stomach ache …
My spirit gets heavy with each new fever …
My hope dims each time I hold you while you violently vomit simple crackers …
My words fail me when I try to comfort you through each episode …
My mind is filled with “why us” … “why you” … “why can’t they help you” …

You shake now. It is a reaction to the meds and being stuck in bed for most of the day.           I absolutely hate it. I hate how many meds you have to take. it seems like every hour it is something. All day and all night.  Hate it …

20161221_122212On Wednesday Dec 21, I received yet ANOTHER reality check as your mother and I decided that we needed to shave your head.  Hair was beginning to fall everywhere.  As I stood there watching your hair being shaved off, a heaviness and defeat filled me.  I managed to hide my tears and even was able to make you smile … for a moment anyway.

As I watched all the hair pile up on the floor, I just wondered how much worse things could or would get. I know that I need to resist thoughts like that. Easier said then done.

On the bright side, you have a wonderfully shaped head.  Even without any hair, you are still so handsome.

On Thursday  Dec 22nd, you had a scary reaction to receiving blood platelet early this morning.  I was laying awake next to you and your mother.  Something told me to go over and check on you.  You were shaking. I tried to cover you up thinking you were cold.  But something didn’t feel right. Your face began to swell and hives started erupting on your face and arms.  Your mother and I watch for the next 15 minutes as the nurses scrambled to pump you with yet MORE meds to combat these reactions.  I sat with your mother on the corner of our little bed fighting back tears.  Nothing has ever hurt me more than being a bystander to your suffering – to witness my little boy suffer and not be able to do anything.

We are told that you need to go 48 hours without a fever.  Your mother and I will continue to pray that we get out of this hospital so you can be in the comfort of your home.  But sadly we have had to discuss how we will handle spending Christmas in the hospital with you.  We are believing for a Christmas miracle … but as along as we have you and each other, that is enough for us.

We love you so much my son.