A mother knows

It was sometime past midnight when we all finally fell asleep after a very long day. You started your day at 8am with blood labs, followed by a lumbar puncture, 2 chemo infusions, and oral chemo. Your dad and I managed to jigsaw our way into the fold out couch in the inpatient room, as you lay cocooned in a mixture of hospital sheets and your Star Wars furry blanket. I knew our sleep would not be restful. The fluid they were running to hydrate you caused you to have to get up to go to the bathroom every 90 minutes, not to mention the constant one-volume-fits-all beeping from that machine. The nurse with the squeakiest shoes was scheduled to check your vitals every four hours, waking you to take your temperature and blood pressure.

At 3am, I opened my eyes to see the nurse arranging to infuse an unknown medication. I stopped her. “What is that?” I asked, rubbing my eyes. Straight of out slumber, fear and anxiety shot through me as she said exactly what I didn’t want to hear, “He spiked a fever and the doctor ordered antibiotics,” In that moment, my mind transported back to 7 months ago when my son was overdosed with antibiotics, developed Clostridium difficile, (a bacterium that can cause diarrhea and inflammation of the colon) and became hospital bound for the entire month of December. I was not going to the let that happen again. The dialogue was as follows:

“I am not comfortable with my son receiving an antibiotic at this time,”

“I spoke to the doctor and we need to make sure he does not have an infection.”

“I understand that the doctor is following protocol, but his history reveals that he develops fevers after receiving ARA-C chemo.”

“Well, I understand, but we need to be proactive and give him the antibiotic, just in case.”

“It’s 3am, I rather hold off on the antibiotic, give him Tylenol and see if the fever comes back later in the morning. During rounds, I can consult with the doctor myself.”

“Okay”

I was empowered by being your mom. I know you and love you and think about you more than any doctor or nurse every will. You are Seth, not lymphoblastic lymphoma. Anyone that forgets that, needs to be reminded.

Rounds came at 10am, 3 hours after the Tylenol stopped keeping your “fever” from returning. I stood infront of 15 medical professionals, confident and clear. There was already a plan in place for you to stay another night in the hospital. Nope. Antibiotics were ordered and ready to be administered. Nope. 

He received his 2nd of 4 doses of ARA-C around 3:30 pm and as I predicted, the fever returned 5 hours later. We sprung into action, removed warm blankets, gave him cold water to drink, and alerted friends and family to keep praying for Seth. By 9:30 pm, body temperature was normal and we needed to wait just 30 more minutes for preliminary blood culture results to come back negative.

It felt like hours waiting to find out if I was right. I began to question myself and my decisions that day. Was I too brazen with the doctors? Did fear and trauma cloud my better judgement? What if he really did develop an infection and I kept him from products that could fight it? I turned to you, Seth, and your smiling face and laughter assured me. You are so brave and strong. I am honored to be your mother and feel so blessed to be the one that God chose for you.

By 10:30 pm I was signing your discharge papers and we headed home, so happy, but so weary.

Perseverance

My son,
We are almost half way through what is called Delayed Intensification. The doctors were hesitant on how to tell us that this is the hardest phase for most children, next to the very first phase. We are a weekend away from back-to-back chemo, four days in a row for the next two weeks. You also have lumbar punctures and chemo shots scheduled throughout the month of July.

Getting to this point has taken its toll on all of us, most of all you. The steroids started up again and they hit you hard. Depression, sadness, lack of desire to do anything.  There have been many days where you are frustrated and just tired.  Fortunately you only have to take the steroids every other week. You also had to resume your Intermuscular shots again. Three days a week.  You’ve been consistently brave, but I can tell that it is getting old.  No child should have to endure so much at such a young age.

Lately it has been hard not to notice your “war wounds”.  The scars on both your legs from so many shots.  The irritation around the port.  The daily gags when a smell hits you.  It is heart breaking. There is also the steady steam of “reminders” of things you can’t do.  You asked your doctor when you could go swimming … you caught him off guard as he scramble for a nice way to say “You can’t”. Then there are the unexpected disappointments such as when your hair started to fall out again. I can’t even explain what I feel when I have to shave your head. I just hate it … I hate everything about this.

The secret that your mom and I hide is that we are, at any given moment, a breathe away from breaking into tears.  There is this weight that is always there for the both of us … and it never goes away.  We both have become experts at hiding sadness from you and others around us.  You have gotten pretty good at it too.

The other day, I was asked if it would be ok for another parent to view your port. You of course were ok with it.  A few moments later, a young mother made her way into our room.  I recognized the look on her face instantly.  A mosaic of dread, shock, sadness, and heartbreak.  That moment was just the latest “worst day of her life” because that is what the beginning of treatment is like. Her child was about to receive a port. I did my best to say something encouraging, but it was a pointless endeavor. I steadied my face until she left and quietly excused myself. I found an isolated area and broke down. Just the look on her face brought me right back to when you were going to get your port.

Through it all, nothing more could be asked of you.  On good days, we do our best to fill them with laughter, music, games, and family fun.  I continue to share stories of my childhood trauma which delights you to no end. We are thankful for every one of those moments.

I am so proud of you my son … I love you my boy.

20170428_105934BW

Romans 5:3-5
… because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts …

silver linings …

4/25/17

My son,
We are approaching the end of your third cycle of chemo. As with each cycle, it has had its challenges.  I can’t help but notice all the injection marks on your legs.  You have been very brave in dealing with treatment, but at the end of the day, you are just a little boy and only so much can be expected. What is being asked of you is unnatural.

As we have unwillingly become aware, there are so many things that can go wrong throughout the course of chemo therapy. We know or have seen other families helplessly try to deal with infections, complications, reactions, fevers, port issues and other nightmarish delays. It does not take much before your find yourself in the hospital for weeks.

Despite everything, there have been moments of love, laughter, and joy that are anchors for your mother and I when the fear and sadness overpower us.  We have always been good about spending time together as a family. But in this season, our time together means so much more.

We have been making memories that we will cherish in the days to come.  The  nights when you walk into our room at 1 am asking to hear “stories of when I was poor” otherwise known as my childhood. I am certain there are few things on this planet more beautiful than your laughter.  The afternoons of listening to you sing along with your spotify playlist and on occasion dancing around the living room. Your excitement and competitiveness when we play Nintendo Wii or some old fashion board games.  Laying in bed with me reading comics or on the couch with your mom watching a movie. These moments are gifts from Heaven in an otherwise heartbreaking season.

I can honestly say that despite the heavy burden you’re dealing with, your light still shines bright.  You are exceptional and you confirm this on an almost daily basis.

We love you son …

20170317_081425

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 .

20170127_151756

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.

20170127_142651

 

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.

img_0124

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.