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. ♥
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
A Caregiver's Guide for the Child Cancer Patient 