God willing, the chemo treatment for my precious Sharmalia is almost over.  It has been almost two years and I have learned a lot along the way.  I am sure with the exhaustion I have forgotten a lot as well, but here are a few things we have learned that I hope will help make your journey with your child a little easier.   

1.  USE NUMBING CREAM WHENEVER YOU CAN 

~Access the port Inpatient:  If your child is just beginning her treatment and she is still in the hospital demand that the hospital numb your poor babies chest if they have to re-access her port.  I actually had a nurse tell me while my baby was screaming ‘owie owie owie“ that it didn’t hurt her to put a 20 gauge needle in her chest.  However, once we were outpatient we were advised to put numbing cream on her before they accessed her.  I was furious that they let her suffer while she was inpatient when their standard procedure at the outpatient clinic was to help numb the pain. 

~Demand numbing cream before starting her IV’s.  If your child needs to have an IV for any reason, make them apply numbing cream to potential access sites.  I wish I would have done this!  I am still haunted by the nightmare of holding my terrified, suffering, confused baby as the IV attempts failed in her hands, arms and feet over and over again.  

~ Use numbing cream for everything. You’ve got it, so use it.  Make sure you have applied it before any ER visits.  I also used it for my daughters flue shot and other shots she’s received.  I figure, why not she has felt enough pain already.  Keep her as comfortable as possible.

2.  APPLY VASALINE & “GLADE PRESS n SEAL” FOR PORT ACCESS

~Vasaline:  Before putting numbing cream on your child’s port, put vasaline on their chest around the port. (But not where you are going to put the cream.)  Cover the area with Vaseline which the tegaderm or adhesive bandage will cover.  This will allow the bandage to come right off without tearing your child’s skin and with no pain or crying. 

~ Press n Seal:  When covering the numbing cream, instead of using tegaderm or like adhesive, use “Glade Press and Seal”  (you get it in the the grocery store with the plastic wrap.)  It doesn’t hurt when it comes off.

3.  CHAMOMILE CALM: USE AFTER STEROIDS, CHEMO & HYPER TIMES

Calm the Nerves:  After my daughters methotrexate she went through a phase where she was really alert and it would take me three hours to get her to fall asleep for her nap and three hours to fall asleep at night.  With a newborn at home I didn’t have that kind of time or patience.  Then I discovered a natural liquid Chamomile product, called “Chamomile Calm.”   I put it in some juice about a half hour before her nap time.  This helped her nerves to calm down enough to fall asleep more easily.   I have also used it during her week of steroids during maintenance and when she is particularly hyper.  

 4.  SATIN SHEETS & BLANKETS

~Skin Sensitivity: My daughter has always like her satin blankets but she when got sick she could not live without it.  During induction she became ultra sensitive to touch and she couldn’t even tolerate us kissing her.  During her initial treatment it became critical that she lay her head on the satin side of her blanket.  She still does this two years later.  Also, the only way that I got her out of our bed, was to buy her satin sheets.  Not only was her skin sensitive because of the steroids but when she kept loosing and growing back hair all over her body and face, the satin didn’t rub so much on her new hair growth.

5.  BENEDRYL IS BETTER THAN PAIN MEDS DURING STEROIDS

I wish I learned this two years ago, but just this month I realized how much better my daughter does on benadryl vs Tylenol with codeine for dealing with the side effects of steroids.  During her steroid weeks of maintenance she typically has 3 to 5 days of very little sleep because she is spending so much time itching.  My doctor had told me to use pain meds in the past so I have been doing that for the last year, but Benadryl worked much better.  Try it. 

6.  TYLENOL WITH CODEINE VS. OXYCODONE

If your child is like mine, Oxycodone makes her chatty and hyper.  It is a good pain killer and mood lifter, but it is not a good drug for her when she needs to go to sleep.  I know that some facilities do not prescribe Tylenol with codine  because of Tylenol’s ability to mask fevers.  However, if your child is not sleeping well because of pain and oxycodone only makes her hyper ask your doctor for Tylenol with codeine, and then just be very aware of your child’s temperature and health whenever you use it.

God Bless you and your child.