Life As We'd Known It Had Changed

Last Week's Blog > "Friday, April 24th, 2009: Tough & Terrifying Day!"

After the first weekend home, we slowly began to adjust to our new routine. Steve and I were exhausted, nervous and apprehensive about our lack of experience caring for a sick child. We were novices, but wanted so desperately to do everything right. We feared failure. The stakes were too high and the consequences too dire. Our happy, carefree lives had changed and now we needed to change too.

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Steve and I were a team. My mom once told me that she admired the way we balanced each other. Steve was strong when I was not; I was strong when he was not. I was grateful for that.

In an unspoken agreement, Steve and I identified our roles. I was the primary caregiver, in charge of keeping all the details straight and preparing and giving the medication. Steve was the assistant, the emotional support guy and backup. He filled in when needed.

Sadly, Atia struggled with dehydration for several weeks. She wasn't interested in drinking milk, juice, formula or any other liquid, so she required a saline bolus for much longer than anticipated.

As a result, I had to learn how to attach a saline bolus to her picc line - a sterile procedure that was tedious and complicated. Failing to perform the ten steps flawlessly could have resulted in infection or contamination. And if that happened, Atia would have to be admitted back into the hospital to be treated and to potentially have her picc line surgically removed. Because her treatment required access, after the infection cleared, she would have had to have another central line surgically implanted.

So, the pressure was on to do it correctly. There was no room for error. It was a lot to handle (and here's where I become a broken record again), especially because I had no medical background.

"I'm not a nurse. I just play one on TV."

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I also had to prepare all of her other medications. With most of them, I simply had to extract the prescribed ccs or mls into a syringe, but for some I actually had to make them. I crushed chemo pills and mixed them with liquid, then extracted the blend into a syringe.

It was scary at first. I had never done anything like it before. But after a while, I built up some confidence and actually felt comfortable doing it. It became routine. I even joked with friends and family that I might go back to school for nursing, once Atia's treatment ended.

Atia also began adjusting to the new routine. We called her picc line, "Mommy's stuff." That way, she understood that she wasn't to touch or play with it, which is something I was afraid of since it was a peripheral IV dangling from her upper right arm. We also hoped that it would encourage her not to be afraid when I reached for it. It worked. She never touched or played with it and she never fought me when I needed to access it, clean it or bandage it up.

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Overtime, a funny little habit began to appear. Atia would only eat "chips 'n dip." The chips had to be Ruffles potato chips and the dip had to be Dean's French Onion dip. We found it odd that a one year old would enjoy eating onion dip - kind of a strong flavor for such a young palette.

We asked the pediatric oncologist about it and she explained that chemo mutes the taste buds and that Atia would probably continue to prefer foods with stronger flavors. It made sense to us and we were simply happy that Atia was eating! She loved "chips 'n dip" then and still does now. It's one of the "yummy" foods that we allowed her to eat during her "special times" (e.g., heavy chemo treatment days, weeks, months).

Unfortunately, our time home was cut short. Less than two weeks later, we were back in the hospital. For several days, Atia had complained that her "pee pee hurt". On May 6th, 2009, Atia developed a high fever of 102.9 degrees. Steve was at work, so I took her to the emergency room and she was admitted to the hospital shortly thereafter.

Atia had an e.coli infection in her bladder, a possible urinary tract infection and a damaged urethra (from the catheter placed during the second emergency room visit several weeks previous). At first, the tests also showed that Atia had both staph and strep infections in her blood. Later, the doctors retracted those findings and theorized that the results were due to a contaminated blood sample. She was put on antibiotics and was in the hospital for eight days.

While there, daddy had to work, so we passed the time by watching educational DVDs, reading books, playing with puzzles and reviewing flashcards. Atia slept most of the time and was still immobile; she hadn't walked independently in over three weeks.

One of her favorite things to do was to ride up and down the hallways in her little pink car. Occasionally, we'd stop in the playroom, but couldn't stay long if other children were playing. Atia's immune system was still weak and we couldn't take the chance of exposing her.

However, one day the playroom was empty and Atia wanted to play. This thrilled me because most of the time she was sleepy and unmotivated. Atia saw a dollhouse complete with dolls that piqued her interest.

I parked the little pink car. And while bending down to help her out, something amazing happened... she began to lift herself out on her own. It was a struggle, but she did it. I grabbed her and helped her walk to the nearby table. She let go of my hands and quickly grabbed the table.

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Then, hunched over like a little old lady, and using all her might, she pulled one leg in front of the other and began to walk. Her movements were awkward and ungraceful, but it didn't matter. She was walking!

That moment will stay with me forever.

Uncontrollable tears began rushing down my face. I fumbled around trying to locate my iPhone... Picture, Picture! I have to take a picture; daddy will be so proud. Those were her first steps and they were more important to me than the first steps she took when learning to walk as a baby.

So far, the journey had been rough, but those miracle steps gave me a newfound hope. That was the day I became empowered. We were going to make it through this TOGETHER. We had to...

Change is inevitable...
adapting to change is unavoidable;
it's how you do it that sets you together or apart.   
- William Ngwako Maphoto
 
 

Comments

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  • What an amazing post, Laura. It is really incredible what you have been through, and I am awed and inspired by your (and Atia's!) strength. I had tears in my eyes when reading about Atia walking. What a magical moment that must have been!

    PS-I have to say, Dylan looooooves french onion dip too! He would eat it straight out of the jar without chips if I let him! :-)

  • In reply to KhadineKubal:

    Thank you, Khadine. It's amazing how low the lows have been and how high the highs have been. To take such great pride in a few little step is humbling. It reminded me how very special all the "simple moments" can be.

    When Atia eats her "chips and dip", it's mostly dip. She uses the same chip over and over again. Sounds like our kiddos would have a great time eating together. Can you imagine the amount of double-dipping?!?

  • The girl has good taste - that is the BEST combo! :-) It is amazing how this gives you such a different perspective, where walking becomes a momentous achievement. Amazing!

  • In reply to skdickey:

    That's exactly right! We were so excited when she started eating and drinking again too, since she'd gone so long without any measurable intake. It is shocking when the basic become a celebratory experience.

  • I am so inspired by Atia's strength...

  • In reply to vavila3:

    Thank you for sharing that quote. There are no better words. Atia is amazingly strong, for a little girl of only two and a half years old. She's experienced things that people many moons older have not. I continue to be in awe of her bravery and resiliency.

  • I agree with Vanessa's post and Gandhi's quote--Strength does come from an indomitable will. Your little Atia and your story continue to bring tears to my ears, inspire me to be more grateful for EVERY little thing, and to just love, love, love. Thank-you for your courage and your strength in keeping your story going. It cannot be easy to continue writing your experiences with the long hours and exhaustion that you have; nor can it be easy sharing such intimate details. There are many families out there similar to yours that, I am sure, can benefit from your experience. Anita Piwowarczyk

  • I agree with Vanessa's comment and with Gandhi's quote--strength does come from an indomitable will. Your little Atia and your experiences continue to bring tears to my eyes, inspire me to appreciate EVERY little moment, and just love, love, love.

    Thank-you for sharing your most intimate moments. It cannot be easy keeping up with all these writings when you have such long days and stress. Your entries most certainly will help those families who are perhaps only now embarking on the same long and arduous journey that your family has. I have no doubt in my mind that you, Atia, your whole family, are a true light from above.

  • In reply to anitarudite:

    Tears of joy this time, right? :-)

    I relive every moment as it's written in black and white. It is hard sometimes, but it's also immensely therapeutic. It helps remind me of how much we've been through and how far we've come.

    My hope is that Atia's story touches some and helps many. I appreciate your continued support throughout our journey. I too believe that Atia is a light from above. She's opened my eyes to the true joys of life, not the superficial, artificial stuff everyone gets so caught up in. When life gets hard and I feel down, I just look at her smiling face and she lifts me up.

  • In reply to anitarudite:

    You have come far. You are all certainly in God's light.

    One thing that does baffle my mind--how did both of my posts get posted? :) I wrote the first one and it disappeared, so I wrote the second one, posted that, and then both show up? Weird. Sorry for the double posts!

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