Tag - chemo

Correct Carpet Cleaning
Going Home
Starting to Rally

Correct Carpet Cleaning

Thursday May 1st, 2008

The only item that has not been thoroughly cleaned in our house is the carpet in Kayla’s room. As you know cleanliness is a very high priority. Unfortunately carpets are very unhygienic, harboring all sorts of fungi, bacteria, dust, mites, and who knows what else. Finally I am going to attack the carpet and get it thoroughly clean.

Her room is not large, probably 12 x 11. I decided that I wanted to do the carpet because a hired company will not go over the carpet repeatedly like I will.  Plus, there’s a way to rent a carpet cleaning machine and get your carpets super clean. I use an enzyme cleaner that is natural with no added soaps or fragrance and made specifically for carpets. I use that with distilled white vinegar and water. Soaps and all that other stuff are not good because they leave residues on carpet fibers. Fragrances and chemicals also leave residues that are not needed, nor are they healthy. Instead I like to use white distilled vinegar mixed into the container of water. Vinegar is a natural disinfectant with the pH helping to keep colors in the carpet bright. Used as a rinse in laundry it will revive dull fabric.  Enzymes break down different types of dirt, releasing them from carpet fibers. That the three major cleaners, water, white vinegar, and enzymes. Pretty simple. Enzymes are a cap full or as otherwise directed on container. Vinegar should be at least a full cup to one tank of water. Here is a link to a natural enzyme cleaner that has hundreds of good reviews.

When I clean the carpet, repeatedly going over an area. The water that gets sucked back up into the machine will get dirtier and dirtier. I dump it out and add clean water, vinegar and enzyme cleaner and continue cleaning. This is repeated over and over in one section at a time, until the water coming into the machine is and looks as clean as water from your faucet. Then you move onto the next section and repeat the same repetitions, section by section until the carpet is thoroughly cleaned.  It took me all afternoon to get the carpet completely clean as described. The difference was beautiful. The carpet looked as if it was just installed.

Seeing the totally clear water gave me peace of mind.

My next project of the day is to try and figure out some of the prescriptions and how to administer them so that Kayla is not experiencing such stomach distress.

I had to wait until later in the day to go to our pharmacy and speak to the pharmacist about Prevacid and steroids. We are still having major problems and I need professional help. His directions were as follows; on an empty stomach take the Prevacid. Wait one hour, eat food and make sure some dairy is consumed, and then take the steroids. We shall see if this helps.

It is great going to the local drug store and getting free advice. The best time to go is late at night when they are not busy and then the pharmacist will spend a lot of time explaining things. Our CVS pharmacy is almost around the corner from us and the pharmacist has been so very nice to me. Its been such a blessing I cannot tell you.  If you are in a similar situation check out your local pharmacy and talk to the pharmacist. You could have a hidden jewel right in your neighborhood who is willing to help.




Going Home

  Monday 14th of January 2008

Bill has been getting the house ready for us.  Because of the cast from thigh to toes, the bathroom had to have the shower doors taken off so that we can get Kayla in the tub. We also put a hand held shower head in that is adjustable.  Bill had a company that was going to come out on Tuesday to sanitize the house, we did not know we were going home today!  A dear friend went over to our house and did the cleaning.  Poor Bill has been coming to the hospital and bringing food, working, and getting house ready.  Today we will take out one of the seats in the van to make room for Kayla.

I met with physical therapy and they arranged a walker which is so much better for her to walk.  Her good leg is still in a lot of pain.  Then we arranged a commode and a wheelchair.  Kayla is obviously very weak.

Kayla has to get a spinal tap and also a bone marrow.  These are so rough.  This time Kayla spoke to me during the procedure.  Afterwards she described the pain she felt.  I guess the Versed (forgetter drug) is not really working but I do not know what to do about it.  Kayla slept for many hours after the marrow.  I went to get the prescriptions and go clean Ronald McDonald House and check out.  They are so gracious and kind.

We arrived home around 8:00 p.m. and put Kayla in the guest bedroom.  I went to CVS to get another prescription.  The pharmacist was  wonderful.  He explain photosensitivity to me, explaining that the medicine coming out of the skin is like having millions of tiny magnifying glasses on your skin.  This is why people get burned by the sun.  Their skin is not sensitive but the magnifiers make the sun more powerful and thus bad sunburns can happen.

Off to Walmart to get a bath stool, shower curtain, and some very soft clothes for Kayla as the chemo has made her skin incredibly sensitive.

Tuesday 15 January 2008.  Got to bed at 2:30 in the morning and was up at 7:00 am.  There is so much to do.  Laundry, cleaning, unpacking, calling for wheelchair, setting up home-bound school, sheesh!  Keeping Kayla comfortable and happy in between all of this.

At night Bill and I took her out for a walk with our dogs then we played ball in the living room.  Kayla is still serious and not laughing.  We are concerned and keep trying to find ways to entertain her.

Wednesday 16 January 2008

I woke Kayla at 8:00 a.m.  to try and get her onto a schedule.  It didn’t work, she was up until midnight even though she is visibly exhausted.  She also get ups to eat.  The steroids make her ravenous and she is turning into a moon face.

We went to the clinic regarding the severe leg pain.  They gave us codeine to try for the pain.

Thursday, 17 January 2008  Kayla took the codeine and tried to walk 30 minutes after she took the medicine.  It did nothing.  Now she scoots across the floor on her butt.  At least this is exercise. I got the Cytogenetics results.  Cytogenetics is the study of the chromasomes of the Leukemia cells.  As a result Kayla was switched from low risk to average risk.  With Leukemia there are several stages; low risk which means six months of chemo then onto maintenance which is once a month chemo. The survival rate for low risk 87%.  Average risk is a similar program.  Average risk high is our new category and this is a total of 8 months of heavier chemo for us.  The survival rate goes down to 65% – 70%.  I cannot tell you how bummed I was by this!  High risk is usually 8 months of chemo along with radiation and I do not know what the survival rates are. This is actually a very complex subject because the doctors use many tools to determine risk factors, i.e., genetic studies, timely response, the type of Leukemia cell, etc.

I asked the doctors for nutritional help, but they had no real answers.  Nutritionally, they are no real help.  Reading the internet gets scary so I only go to medical sites now.  Any chance I get, I do research on the internet and read cancer books searching, searching, searching.  Too many questions are unanswered.

Friday, 18 January 2008.  Terrible day.  Kayla was irritable and nasty all day.  Everything I tried to do for her was wrong, after the third screaming fit I yelled back at her and we both burst into tears.  We were on the kitchen floor crying and hugging.

I went and bought Zantac for her stomach because the steroids irritate the stomach lining.

Blueberry, cream, ice, banana, Jay Robb Protein powder, (www.jayrobb.com) made a fabulous shake!

Kayla was in the bathroom and called me into the room.  “Mom, look!”  She had a huge gob of hair in her hands and she was trying to smile while she said it was okay.  I acted cool, calm and collected and then went out onto the porch and sobbed.  No matter how prepared one is for the hair loss, it is pretty traumatic.  At least its taking a couple of weeks to fall out.

Saturday, 19 January 2008.  Kayla refused to get out of bed.  I would not feed her until she came to the kitchen.  A friend, Rebecca, came over and they played.

The pharmacist explained that Zantac has to be taken 1 hour before giving the steroids, otherwise the steroids eat the stomach lining.  Why didn’t any of the medical staff explain this to me?  It is great being able to go to the pharmacy and get free consultations!


Starting to Rally

Wednesday January 9th, 2008

Kayla was ordered out of bed today.  Bethany took Kayla to the roof top playground and Kayla played with water paint.  Kayla has become serious which is very unlike her.  It is difficult to get her to smile.  This concerns me greatly.  After play time on the roof Kayla was tired out and slept.

Cindy, a Nurse Practitioner, had a two hour meeting with me explaining what we are going to go through.  Cleaning requirements, medications, nutrition, etc.  I took copious notes.

Thursday, January 10th, 2008   Today we do two inter-muscular shots with Peg-Aspariginase, a chemo drug that has to be delivered through a muscle.  It took 45 minutes to calm Kayla down.  The nurses tried everything and she was just hysterical.  Because the numbing cream was rubbed off of her leg, we had to go ahead and do the shots.  Just as we all tightened our grip on Kayla, she came to her senses and told us to count to three.  On three the needles went in and Kayla asked if she could push the medicine in.  The nurse okayed this and she did it.  Obviously it was quite painful as she was crying in pain, but she continued and moved onto the next needle until done.  When we arrived back in the room I asked the nurse to tell Kayla how many children did the medicine like Kayla.  She tells us that she has never seen a child do these shots themselves!

Pretty soon word traveled fast how Kayla plunged her own chemo needles. She was an overnight sensation with the nurses. One nurse came to see me and said she was in a bit of trouble for allowing Kayla to hold the syringe. I told her to tell management that I would be willing to sign any type of waiver that protects the hospital because anything that empowers our daughter is wanted, whether they like it or not. Kayla obviously felt empowered by holding the syringe and slowly mushing the medication in. We would never sue any institution that allowed her to do what she did. Even though I offered, they never asked me to sign a waiver and for the rest of treatment she would do the needle for those intermuscular chemo shots.

Later in the day a nurse came by and ordered Kayla to walk because she has been bed bound for too long.  Kayla cried and screamed in pain.  It looked like she was getting charley horses in her leg.  The nurses insisted she continue walking.  It was a rough ride but she got through it.

Friday, January 11th, 2008  My back is so out, I can barely get out of bed.  Ronald McDonald House has a masseuse who volunteers with massage on fridays.  I can’t believe it.  The massage is great and she shows me exercises to fix the spasms in my back, along with ice packs, my back is better by 1:00 in the afternoon so I can get back to the hospital.

No procedures today! Kayla gets a blood transfusion which takes four hours to complete.  The blood makes her look normal instead of ill.  Noticeable difference in her demeanor after the transfusion, more energy and animated.


Saturday January 12th, 2008

My hunt has been to find other kids that are happy and bring them to our room in the hospital.  I found JD who has a serious blood disorder.  Kayla played with this boy and they really hit it off.  She was also asking him about his disease.  He proceeded to tell her about his daily shots, etc.  This was fortuitous because Kayla got to see someone who has a disease that will not go away.  The idea of having to get shots everyday was horrendous to her.  She is still not back to her old vibrant self but bringing other kids to be with her makes a huge difference.

Miss Bina came to see Kayla.  Wow.  She is Kayla’s teacher from school.  She brought gifts, a scrap book and cards that Kayla’s class mates wrote for her.  Kayla was completely entranced.  She LOVES her teacher.  Bina spent several hours with Kayla.  Visits and company are a precious gift that we really appreciate.

Sunday 13 January 2008.  Kayla is sleeping for many hours during the day.  She will get a blood transfusion this afternoon and this will energize her into the night.  We did Leukemia 101 on the white board in the room.  She is trying to understand her illness.  Found out we will be discharged tomorrow, which scares the shit out of me.  The nurses and the machines are like a security blanket and there is so much to know and too many unknowns.

No one has taught me anything about sanitary methods so I went and watched house-keeping clean a room.  Here is what they did; stripped the bed.  Sprayed it down with a product from a spray bottle and wiped off the bed with clean water.  Everything in the room that anyone touches was first sprayed down and then wiped with a clean rag and fresh water.  I asked the lady about the product they use and it is called Virex TB.  This product meets government guidelines for blood born parthogens, the label is quite impressive.  On the internet their website is www.Uclean.com   A case of this stuff costs $40.00 which would last a very long time.  I really like it.


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