The Phases of Chemo

Last Week's Blog > "WychList: a New Shopping List iPhone App"

(continuation from 2 weeks ago)

So, we'd switched hospitals - to University of Chicago Medical Center (U of C) - and on May 28, 2009, Atia was scheduled to begin the second phase of treatment, "Consolidation". We were nervous because it was our first time EVER receiving treatment from U of C and not only was Atia going to get chemo, she was going to have an invasive procedure done that required anesthesia. 

Thumbnail image for Thumbnail image for Port Placement1.jpg

Atia was to have her picc line removed and a port put in her chest. I was frightened by the concept. During my cancer treatment, I had never had a port. I gave myself injections in my thighs, but my grandmother had one. The stories I'd heard about ports being accessed for chemo treatments sounded so painful and scary. I couldn't imagine Atia having to go through that, not to mention that it was yet another serious surgery in which she had to be sedated.

 Despite the fact that we'd already been through this once, I hated every moment of watching my baby get prepped for surgery; holding her hand while she fell asleep was the toughest. Morbid thoughts crept into my mind. I tried to will them away, but I couldn't.  
The procedure took longer than expected. They tried to insert the port through a small incision in her neck, but it didn't work. So they had to make a second incision in her chest. She received several doses of chemo during the procedure, including an injection into her spine.

Atia's Accesed Port1.jpg

The first time her port was accessed there were a lot of tears, from both me and Atia. She was crying because it hurt, I was crying because I hated that she had to go through it and that I was the one who had to hold her down and let them "hurt" her. Again, another miserable experience.

Thankfully, Atia withstood that phase of treatment fairly well and had little-to-no complications, but she was left with two scars; one on her neck and one on her chest. Her baby soft porcelain skin had been forever marked - bearing the physical reminders of all she had and would endure.

I often think about the future and sometimes silly, somewhat irrelevant thoughts invade my mind. One of the recurring ones is - I hope Atia's able to wear strapless dresses someday without having to worry about covering up the scars. Goofy, right? I mean, in the big scheme of things, does it really matter? But, as the mother of a girl, I think about those things.

We expected to begin the third treatment phase, "Interim Maintenance", on June 26th, but Atia developed mouth ulcers (sores) that made it difficult to eat or drink. Her blood counts also plummeted and were too low to continue. Treatment was temporarily halted.

The entire time I worried that something more sinister was causing the delay, but the doctors assured me that delays are "typical"; almost all children undergoing treatment experience them at some point. That reassurance helped calm my nerves a bit, but I still felt an anxious tingle in the pit of my stomach. I prayed for her speedy recovery so that we could get back on track with treatment. I was scared that every day off of chemo created a small window of opportunity for rogue cancer cells to grow.

Eleven days later, Atia was well enough to start back up again. That was our first significant delay. "Interim Maintenance" finally began on July 7, 2009.

Two days after that, Atia started experiencing excruciating pain every time we picked her up, changed her diaper or asked her to stand. Her reaction to pressure put on her abdomen caused us great concern. We immediately notified the doctor and blood was drawn to test her liver functions and enzymes; they were slightly elevated and an ultrasound was ordered. It showed that Atia's liver was inflamed and enlarged.

Panicked, we looked for an explanation. Unfortunately, the doctor wasn't able to pinpoint the exact cause. We were told that it was NOT a "typical side effect" of the chemo Atia was receiving. Immediately, my thoughts drifted south; I started thinking that something else, much worse must have caused this; something bad that we just couldn't see yet. We were told to monitor the situation and advise the doctor of any changes. Luckily over time, her liver healed itself.

Thumbnail image for Thumbnail image for Atia In Pain.jpg

However, the "Interim Maintenance" phase continued to be challenging. We'd been told that this phase was "easier" than some of the others, but apparently Atia's body hadn't gotten the memo. She suffered from a whole series of serious side effects: vomiting, nausea, severe constipation and loss of appetite. At one point, Atia had to be taken to the emergency room because of a high fever. Thankfully, her blood counts were high enough that she wasn't admitted.

Again, we were advised to monitor the fever and call with any changes. It too healed itself. We were happy to wash our hands of that phase when it was over on August 17, 2009. But, we were incredibly nervous for the next. It was supposed to be a doozie.

"Delayed Intensification" began on September 4, 2009. We'd been warned that it would be the hardest of all the phases. The main reason was that she would receive higher doses of chemo than ever before in an effort to wipe out her immune system (similar to the goal of the 1st phase of treatment).

She was going to be sick, really sick...

 

 Next Week's Blog > "Delayed Intensification"

Comments

Leave a comment
  • Laura, every time I read your entries, it helps to put everything in perspective. You are so brave, it is amazing. Thanks for sharing your story.

  • In reply to NinaGoyco:

    Interestingly, writing this and reading it also helps remind me to put things in perspective. As Atia has gotten healthier and healthier, she's begun behaving like a full fledged 2 year old and there are times when the noise and attitude is too much. But then, the memories come flooding back & I'm quickly reminded of how just a few short months ago she didn't have the strength and energy to be loud and wild... At those times, I'm grateful for her craziness!

  • Oh, Laura, how my heart bled for you and Atia while reading this post! What an incredibly difficult experience. I echo Nina's sentiment, this sure puts everything else in perspective...

  • In reply to KhadineKubal:

    Khadine - Those chemo phases and the next that I'll be posting next week were horrible. They really tested our love, strength and relationship with God - I must have prayed a million times each day. I was exhausted and tortured watching Atia go through all of that and knowing that I could do nothing to take any of it from her. Plus, being a cancer survivor, I KNEW what she was going through (at least better than most). Every day I physically marked off the days on the calendar. It was my one tiny way of feeling a sense of control.

  • Perspective. I agree--your experience really makes this sunshine today so much more warm and beautiful. We need to remind ourselves of what's important in life and what never to ignore or take for granted.

  • In reply to anitarudite:

    That's right. Without good health, nothing else matters. We were fighting for Atia's life and everything else seemed superficial. We found joy in the simple, every day things like, Atia's hungry today and wants to eat, Atia is asking to play with her dolls, Atia didn't throw up from the chemo today...

  • Can I say that I feel incredibly guilty now for yelling at my kids last night about their lengthy media usage? I'm so sorry that your daughter and you (and family) are going through this. I'll never forget my (then) baby daughter's week-long hospital stay to remove a cyst from her intestine...the helplessness, the sadness, the worry. You are very strong indeed! Hang in there....

  • In reply to jtithof:

    Thank you, Jackie. Atia is doing much better these days and is an active 2 year old (although still undergoing chemo treatment). Don't feel too guilty about yelling at your children, just this past weekend Atia was in time out several times (and of course yelling occasionally goes along with that). :-) I'm sorry that your daughter had to undergo surgery. It's a terrifying experience. I'm glad she's doing well now. It's truly amazing how resilient children are. Please keep following the story so that you can share in the joys of her remission and healing (I'll get through writing about all this tough stuff at some point)!

  • Laura, I have been reading your posts for the past six weeks since I first began blogging for Chicago Now. Your story is so personally touching to me, and I feel such admiration for you and all that you are enduring. I look forward to the day when your child is in remission and you can heal from all this pain.

  • In reply to CarrieGoldman:

    Carrie, Thanks for your comment. Atia is almost a year into treatment now and is in "maintenance". She's officially cancer-free, however still has over a year of daily chemo treatments. She's a vibrant, rambunctious, beautiful little 2.5 year old now. I'm really excited to share the "Atia of today" with my readers, but I have to get through all the hard stuff first.

    I read several of your entries and you've certainly been through a lot as well. I can't imagine going through the loss of a child - that was (and still is) my greatest fear in all of this. I couldn't bear to lose Atia and I have no idea how I would continue on if that was the outcome. I admire you for your strength and courage to continue pursuing your dreams of creating a family (and what a beautiful one it is). I look forward to following you!

  • In reply to CarrieGoldman:

    Hi Laura, Thanks for introducing me to ChicagoNow. I've read through all of your posts and I've found strenght and encouragement from all that you and your family have endured. We will continue to keep you and your family in our prayers during these trying times.

    Also pryaing for Lil "Lu-Lu's" continued strenght and courage during this time.

    She's very blessed to have you as a mom. From reading your posts I can tell that you are still great Project manager by detailing all of the various tasks that you've experienced.

    Stay strong and know that you and your family are in my thoughts and prayers.

Leave a comment