March 23, 2013
Reiki Healing Therapy
I wanted to say something about Reiki (‘ray-kee’) and the big role it played in Shana’s recovery. Reiki is a natural healing process and involves the transfer of divine healing energy from the practitioner to the patient to enhance the body’s natural ability to heal itself and assist in relieving pain. Please look it up when you get a chance.
A couple of years before Shana became ill I took a Reiki class. At the time I felt compelled to do so but it was consistent with my lifelong interest in spiritual matters, energy bodies, the aura, thought forms, and whatnot. In our Reiki class, we learned that while doctors and nurses and modern medicine provide medical treatments, healing is spiritual.
When Shana was diagnosed, I started giving her Reiki treatments almost every day, and was amazed to see it helping her, supporting her, and keeping her ‘afloat’. It’s no exaggeration to say that the Reiki was a huge part of her getting well. It supported her during her chemo and radiation, it kept her nausea down (try driving with one hand on the steering wheel and using the other hand to apply Reiki to your child’s tummy!). It kept her alive during the year-long treatment. Following each Reiki session, Shana would feel better, stronger, and would be deeply relaxed, and she would sleep well.
I encourage everyone who reads this, especially if you have a sick family member, to look into it. If you would like more information, you’re welcome to contact me as I’m always happy to talk about how it helped my child. My Facebook page is A Reiki Blessing. ♥
Donating Platelets For Your Child
Shana occasionally needed transfusions of platelets which came from our local Red Cross blood bank. I found out that, as her mother, I could direct-donate my platelets to her, and I also discovered this was a great advantage to her.
If you want to do this, you will need to talk first with the oncology clinic staff as this will require some special coordinating between the clinic and the blood bank. The clinic has to make an educated guess as to when your child will need more platelets, then you have to make sure you donate only a couple of days prior to this, but you have to watch your calendar because you can’t donate more often than every 8 days (I think that’s right). We got it worked out but all because we were blessed to have a clinic nurse who went out of her way to make sure it all went smoothly.
The only other requirement was that my blood type had to be very compatible with Shana’s, which it was (the Red Cross gave me a test).
The biggest advantage of doing all this was that Shana received more platelets. Normally, donated platelets from a typical donor is of sufficient quantity to help two patients. The donated platelets are divided by the blood bank and distributed to two different patients. In the case of a direct donation however, the receiving patient receives all of the donated platelets. This means that a bigger bag is hung for the transfusion. The process for the patient takes a little longer, but the patient also can go without another platelet transfusion for a longer period of time.
Just so you know, the donation process isn’t the easiest, it’s a little more involved than donating blood, which I had never done before. Your body gets fairly cold as you’re lying there, so I brought our old microwavable stadium seat to help keep me warm, plus they had warmed blankets. The nurses at the Red Cross were great, they explained the process to me, and did everything they could for my comfort.
I want to end by saying I cannot begin to describe the incredibly gratifying feeling of being able to directly help my child’s body by donating platelets for her, and I was very grateful for the opportunity to do it. ♥
February 28, 2013
Hospital Stays
There were several reasons why Shana had to go to the hospital during her illness. There was a time when she became too dehydrated, a few times when her platelets were too low, or she had a fever.
Comforts
Take anything and everything that you know will add to the comfort of your child, as well as yours, during your stay. You want to recreate the comfort of the child’s bedroom as much as possible.
- Take pillow cases from home and use over the hospital pillowcases. Use pillowcases with a pretty pattern or picture.
- Stuffed animal
- Favorite blanket
- Comforting creams and lotions
- Favorite bedtime story
- Glade plug-in of soothing scent (this made an amazing and wonderful difference to Shana’s hospital room)
- Things to do while in sitting in bed
Hospital Journal
Keep a journal of the hospital / medical events and experiences. We found this to be invaluable! Even though the attending ‘tech’ is supposed to keep track of your child’s data, we found that attending nurses and physicians came to depend on our recall and notations. The data is proof of your child’s improvement during his or her stay. We kept track of things such as:
- When medications were administrated
- When the next medications were due
- When the temperature was checked, and the degree of temperature
- The amount of liquids consumed and amount of foods eaten
- When and how much was urinated
Expand Your Role as Necessary
I sometimes found that my caregiver role had to expand into a ‘care-protector’ role.
We were blessed to have great nurses and caretakers during most of our hospital stays, but there were the occasional exceptions. For example, because of an unfortunate experience when Shana was recovering from surgery, she was never again comfortable with male orderlies, doctors, or nurses. So to help her out, I always explained this to the nurses when we first arrived at hospital. Needless to say, this didn’t always go over so well with the male staff, but I was focused on what my very sick child needed for her comfort. And because hospital staff are very busy and special needs don’t always get communicated to everyone, I posted a sign outside her door that no male nurses or orderlies were allowed in. (I took a pad of paper, tape, and a marker with me). Posting a sign took some of the burden off me of being a kind of door guardian and also I didn’t have to keep (always kindly) explaining over-and-over again to rotating staff why this rule was necessary. All this took some courage but it helped Shana enormously.
There were a few other things like this, there was even a time when I had to tactfully ask that a certain nurse no longer be assigned to Shana. Again it took a little courage, but I found that every time I put Shana’s needs first, it was easy to speak up for what she needed. She was at her most vulnerable when in the hospital and that was when she needed to know that someone was her strong advocate.
Don’t Forget to Take Care of Yourself
Hospital stays are exhausting and you don’t want your child to see you failing in any way. The little dears don’t need to assume the blame for you not feeling well because they had to go to the hospital. So do whatever it takes to keep your energy and spirits up. Eat good food – not junk food – whenever you can. Nap whenever possible. Stay hydrated – hospital rooms can be very dry. We took a stocked cooler with us if the hospital room didn’t have a refrigerator.
Keep your head and emotions in check and you’ll do fine, and your little one will hopefully be back home very soon. ♥
January 17, 2013
Traveling
Traveling in the Car
If your child is like mine, traveling in the car was a bit hazardous. We had to drive a little slower, more carefully, and we always went by the straightest routes. Any nausea always resulted in throwing up. Here are a few things we took in the car or did to make car trips a little easier.
Bottle of Cold Water I always kept a filled cold bottle of water in the fridge and grabbed it as we left out the door. Being nauseous makes you feel hot so a sip of cold water is very welcome.
The “Pink Bucket” We were never without the pink bucket in the car. I’m referring to the small pink plastic tub container the clinic kept handy for patients who were nauseated. Ordinarily you might look at one of these and consider it to be only a small storage container/wash basin, but we know better!
Keep a pink bucket in the car, out of sight of your child as just seeing it can trigger a spell of nausea, but keep it within your quick and easy reach while driving. I lined the bucket with grocery store plastic bags and kept more bags folded and handy underneath the liner. They make clean-up a lot easier, and your child might need the bucket more than once on a trip.
Cold Washcloth I also kept a clean cold washcloth handy in a zip lock sandwich bag (when you are nauseated, you appreciate a cold washcloth). I kept damp clean washcloths in the freezer in ziplock bags and then grabbed one before leaving for the clinic. It was tremendously wonderful to have it when we needed it. I would place one on Shana’s head to cool her off when she was in the throes of nausea and then later it was great for wiping her face.
Wet Wipes It was always good to know they were handy for wiping hands, etc.
Blanket One of the side-effects of chemotherapy Shana experienced was feeling very cold, regardless of the time of year. She felt cold all the time, so we were constantly trying to keep her warm. As soon as she sat in her seat in the car or at the clinic, she was covered with a favorite blanket.
As we went into the clinic, we took the blanket with us. The clinic had great blankets and pillows for their patients, but Shana liked having her familiar home blanket with her.
Hat A very comfy fuzzy hat helps prevent the loss of body heat.
The Clinic Travel Bag
After only a couple of trips to the clinic it became obvious that we would all be a lot more comfortable during the hours there if we brought along a few comforts from home. I had a canvas bag of sufficient size and began filling it with an assortment of items that all proved essential at one time or another. Some items were already supplied by the clinic, such as nose tissue for example, but bringing your own favorite (softer!) brand was nice.
Also, the clinic worked hard to provide good snacks for their patients and families, but if your child’s favorite snack is not available, and he or she is hungry, you’ll be very glad you brought your own along.
In our clinic travel bag, we carried:
- Washed grapes or cherry tomatoes (Shana’s favorites)
- Cold bottle of water
- Favorite home blanket
- Puffs facial tissue
- DVDs (a few for a variety)
- Hand sanitizer (the clinic had some available but we liked the aroma of ours)
- Small insulated lunch bag with cold box drinks and any cold snacks
- Favorite salty and sweet snacks (in small ziplock bags)
- Lip balm (dehydration affects the lips first)
- Something for her to read
- Something for me to read, do, or eat
- Change of clothing
- Current list of medications and supplements, plus administration timetable
While going to the clinic for chemo wasn’t exactly a day at the spa, we almost treated it like it was. By being prepared and taking all our little comforts with us, it kept us both relaxed. It also made it easier for me to simply provide comfort and not display any worry.
May 21, 2012
Favorite Foods and Small Appetites
We found that maintaining sufficient nourishment and hydration was the most important battlefront of the whole cancer war. Most of our hospital trips were because Shana became dehydrated, so we kept our constant attention on her intake. We kept a variety of liquids on hand, juices mostly, so that we would be ready with any liquid we could get her to drink. There was always a glass of fresh water beside her bed as well as another glass of the favorite juice of the hour.
Finding satisfying food is a challenge. You never know what your child will want or be willing to eat, or when he or she will suddenly decide they are hungry. You just hope you have the magic meal, the desired food stuffs, on hand for that instant when they are needed. We kept the usual fresh fruits and salad-making ingredients on hand, but we also kept products like Ensure and Boost in the pantry and tried daily to persuade her to drink at least a little. Over time we developed a food strategy of keeping small portions of a variety of foods in the freezer, ready to be thawed or heated in the microwave at a moment’s notice. These were all sorts of foods from a variety of sources, and almost nothing was too small to save.
I say ‘small’ because we adapted to using small plates and small portions of food for meals. A normal dinner plate with normal food portions was too overwhelming and there was a greater feeling of success (yay!) when a small plate was cleaned. Small portions and small bites on small plates was the answer. Foods were cut and chopped into bite sizes; even salad ingredients were chopped very fine and presented in a small desert bowl.
Presentation is important too. We found it more cheering to present foods on small plates or bowls, which dressed up the food and made it as attractive and enticing as possible.
Nutritional content is important, of course, but many times we favored ‘quantity’ over ‘quality’ and were delighted to see her chow down on a few chicken bites or french fries and an 800 calorie Chick-Fil-A milkshake!
Please feel free to add and share the tips and hints you’ve learned in your caregiver role. We look forward to hearing from you!
– Sally
February 14, 2012
At Home / Bedroom Comforts
Your child may be spending a lot of time in their bed. Anything you can do to make it a little cheery, not so boring, and comforting will be of great solace.
Shana appreciated having:
- Lots of pillows
- Heating pad
- Warm towel (microwave for about a minute, but be careful you don’t burn it, I did once!)
- Warm damp washcloth for sticky fingers
- Foot massages – Reflexology for healing
- Body massages
- Refreshed bed (I straightened up the bed when she was away from it)
- Stuffed animals
- Glass of crushed ice and water
- Finger foods nearby in dish
- Crushed ice in clean washcloth to suck on
- Baby Wipes in the bathroom
- Pink bucket (sick basin) handy but not in view (under bed)
Managing All the Medications
One aspect of Shana’s illness surprised us, namely the amount and variety of medications that accumulated. It became necessary to keep all of her medications very organized and readily available. We settled on a system of boxes and baskets, some for hydrating items and cath flushing, some for pill bottles, and one basket just for creams and ointments.
When it was time for her to take her medications, which were numerous and often, we put a small positive spin on the ordeal by putting her pills in an attractive ceramic dish (a tropical fish). Using the pretty little dish helped us all feel a little less like we were engaged in some serious healthcare institution procedure.
Please feel free to add and share the tips and hints you’ve learned in your caregiver role. We look forward to hearing from you!
– Sally
January 11, 2012
Sharing What We’ve Learned
This blog is for the parents or attendant caregivers of pediatric cancer patients. For over two years I was the caregiver to my daughter, Shana, as she underwent treatment for cancer. During the journey, we discovered and invented a variety of ways and means to help make Shana’s life as comfortable as possible. Hopefully this information will help you be able to make your child’s life, and clinic visits, a little easier. And it is our sincere wish that these tips help equip you with all the little things that can make a big difference in your child’s wellbeing during this time in your lives.
In the coming weeks, I will be writing and uploading various articles such as:
At Home/Bedroom Comforts
Favorite Foods and Small Appetites
Traveling in the Car
The Clinic Travel Bag
Hospital Stays
“Chemo Brain”
Things to do Before Chemo/Radiation Treatments Begin
Donating Platelets For Your Child
And so on, so be sure to check back with us in the coming weeks.
I have also invited my daughter and one of her favorite nurses to contribute to these articles, to add their comments and opinions, as we go along. I hope it’s helpful information for you and I sincerely hope it makes a loving difference in the happiness and wellbeing of your child.
– Sally Norris
A Caregiver's Guide for the Child Cancer Patient 