Author - Deb Witter

1
Alternatives with Chemo
2
Correct Carpet Cleaning
3
Harsher Realities
4
Death
5
Being Stubborn Stops Reason
6
Escape through Books
7
Queen for a Day
8
Sunshine amid some Darkness
9
Days of Drama
10
Joy, Despite Cancer

Alternatives with Chemo

These drugs are taking their toll! Kayla is very pale, listless and tired. Yesterday I tried to get her interested in arts & crafts, and for the first time ever, she said no.

Today I have to give her the weekly antibiotics even though these kept her blood counts down for three weeks in a row. Because her counts were low they had me stop giving her the antibiotic. One missed weekend and her counts went up to 2800. I am so bummed that I have to give her the antibiotic and the result is her feeling more beat up. A plus from the low counts is that the antibiotics went from being administered three days a week reducing to two days a week.  This is how they will be administered for the rest of her treatment. Yay, one less day is excellent.

We are going to take Kayla to a Chinese Doctor who is a trained medical doctor as well as trained in traditional Chinese medicine. I’d try anything to make her road through cancer easier, ANYTHING!

When I spoke to Doctor S., today, to try and get approval to see the Chinese doctor, she voiced her concern over needles and increased risk of infection. I let her know that I did not think Kayla would go for more needles anyway and would not push her to do that. Interestingly Dr. S, then asked me why do you do all of this stuff?  “Well if someone told me to hang crystals in the window at a certain time, and make sure Kayla lays on the bed with the rays of the sun hitting her body once they have passed through the crystal, do you think I would do it? Hell yes, sounds crazy but I feel that I have to take measures to help Kayla get through this, whatever it takes. The treatment is very hard and the soldier has to be supported by whatever means necessary.”  The doctor looked at me with surprise and understanding. We agreed no needles and she gave me her approval to go to the Chinese doctor. Honestly, I think I won her respect that day. Too many parents of patients just leave everything to the medical team. They are no proactive in general with regards to the health of their child and laying all responsibility with the medical team. In reality it does not work that way. They would feel relief and help by having parents proactive on many levels. It was very noticeable that my husband and I were not the norm. We were actually an oddity. All of us that are very proactive stick out.  That is sad.

Before we left the house I gave Kayla 100 mgs of CoQ10 and I’d swear she looked and felt better almost immediately. Kayla’s oncologist approved the COQ10 because I copied information from the book Comprehensive Cancer Care by James Gordon, M.D., and Sharon Curtin. Doctor Gordon, (author of Comprehensive Cancer Care), recommends COQ10 for cancer patients and gives data from studies showing COQ10 had remarkable results.

Another parent gave me some good tips for cancer, i.e., if you are in the hospital and the chemo won’t clear, this means you can’t leave. She said that fruit juices of any kind help to flush the chemo from the patients body. Interesting. She also advised that pickles worked wonders to alleviate mouth sore pain.  Just nibbling on any kind of pickle helps.  Who would have thought of that?  We ended up having a whole conversation about this. I just love getting tips from cancer veterans. They are like being given precious jewels.

 

 

 

 

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.

 

 

 

Harsher Realities

Tuesday April 22nd, 2008   Insurance

Today is the second day of taking the liquid multi-vitamin, Kayla seems much calmer, while having more energy. Probably sounds like a weird description but I do not know how else it could be described. Over the past weeks Kayla’s energy level has definitely improved. I attribute this to all of the supplements that she is taking and the Omega 3,6,9 oils.

One of the parents called me today, in a complete tizzy that her two-year-old daughter, is battling brain tumors and the insurance company is refusing to pay for procedures and trying to demand that she switch hospitals. It is so disgusting that these companies can do this to their clients, especially when they are battling something so debilitating as cancer, they are disgusting! I have heard of these kinds of things over the years but never really paid attention to them. Now I regret not trying to do something about it. There is a major situation in America with Healthcare and Insurance!

Her doctors figured out how to get her daughter treated by admitting her into the hospital and giving her the needed shots in house. They figured out if they did it this way insurance would pay. We have a real crisis looming in our future regarding insurance…

Wednesday April 23rd 2008.

After breakfast I took Kayla to the park because no one would be there during school hours. It was a beautiful day, sunny, nice breeze, and the perfect temperature. Kayla loved swinging on the swing while I tried to tickle her. She then went and climbed on all of the tubes and slide in the park. She also walked the equivalent of a small block. This is a first! When we got back to the house I made her protein shake and added ¼ teaspoon of Spirulina and Kayla loved it. Normally it takes her a very long time to drink her shakes no matter how I make them, but this time she sucked it down and said that the green stuff really tasted good. Who would’a thought? Kayla did not argue about anything today. Ever since I got the news about Megan’s impending death, I decided that I did not want to get stuck into just doing our treatments and not enjoying life. Because of Megan, I had an epiphany and make the effort to figure out joyful things everyday. This has made a big difference for all of us.

Friday April 25th, 2008.

Beach Day! We went to the beach and the weather was perfect! Kayla had a great time but she misses being with kids everyday. Oh well, at least we got out and enjoyed some new scenery and weather. Kayla’s appetite and digestion are doing well.

Monday April 28th, 2008.

Kayla’s ANC is 2800 so today will be a big chemo day. She will get Methotrexate in her spine, Vincristine in her port and Doxorubicin in her port. Steroids start today, but I thought I had two months before the start of this phase. I asked about it and the nurse said I was incorrect. I am almost sure I am not mistaken but they say I am.

I asked the physicians assistant about supplements for Kayla’s bones and she replied that she is doing fine. I hate these f___ing people sometimes because they know all of the side effects but do nothing to help the patient mitigate these effects. To me it is a complete lack of responsibility on the whole medical system to not invest money, time and effort into complimentary and alternative therapies that help the patient get through chemo. It is just maddening! If there were this type of help and support for cancer patients I think the quality of life would be greatly improved. What I see instead is the use of more drugs for every symptom. This is not a solution. Chemo wipes out good cells as well as cancer cells, the steroids suppress the immune system. I know that these things have to be done, but why not use vitamins to help the body cope? Kayla now weighs 58 ½ pounds. She has lost four pounds since she started treatment while she has continued to grow.

Wednesday April 30th, 2008.

 The steroids are kicking Kayla’s ass. She is in a lot of pain. I found a book that we had Reflexology for Beginners, it is helping a lot because I can look for the area of pain and then massage the corresponding area that the book tells you to massage. It seems to be helping her and she likes it.

The steroids cause problems with her stomach and even though Kayla is taking Prevacid, she is still having stomach pain. We made a steroid chart so that we can count down the days until we are done. She liked this activity.

We walked the dogs together, and later she had her protein shake. At 3:00 in the afternoon Kayla felt really bad, tired and dizzy. She took a long nap. I feel like I am on a roller-coaster ride and I can’t get off!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Death

Monday April 20th, 2008.

Kayla’s blood counts are still too low to do chemo. This is now the third week of treatment that we have missed. The doctor told us to skip the weekend antibiotic because they think it is the antibiotic that is holding her counts down. The doctor announced that another bone marrow is needed and I told her I did not want Kayla to have anymore done, if at all possible.

Megan, another girl that has been battling Leukemia for six years, was turned over to hospice. Her mother and I went and talked in the parking lot. I cried when I heard the news. Then her mom tells me that Megan has accepted the whole thing and is forcing the mother to take her to pick out coffins. Megan is doing her Will and wants her trust to go to another 2 year old little girl who is battling brain cancer. They are also going to have a fund raiser so that Megan can do all of the things that she has not been able to do while on treatment. I met Megan in the Bone Marrow transplant unit. She is one tough chick. She was the girl who went through whole body radiation to kill her immune system. The radiation was so strong that she looked like a ghoul from a movie and her mouth could not shut because it was a giant bloody, crusty sore. I had terrible nightmares for two weeks after seeing her suffering. These are the types of things that are not said about bone marrow transplants. Later I saw a documentary on PBS and it stated that 9 out of ten patients do not make it through the bone marrow transplant process. I do not know if the statistics have improved. I do know of a baby that survived it and is doing well years later.

It makes me so mad and upset that Megan is going to die. Her mom is trying to act normal but she is completely out of her mind. This, my friends, is the dark part of cancer. Another interesting thing the mom told me is that a law is possibly going to be passed so that pediatricians will take blood tests at certain times of a child’s growth to check for cancer. Apparently, all the cells go through major changes at certain ages and this would be the time to check the blood for cancer markers. Personally I think that this is a very good thing.

This photo was at the fund raiser and Megan was tired. It was a long hot day. Its too depressing to tell you all of the heart break this family went through. They lost everything due to six years of treatment and lack of insurance.

The next day Kayla had a good day with swimming and school. We took a long walk (with the wheelchair) together in our neighborhood and saw a bunch of kids hanging out. We went and talked to them. Kayla had such a wistful look on her face when she was talking to the kids. She feels that she is missing out on her regular kid world. And she is right about that. This is also some of the most important and formative years of her life spent fighting a disease instead of going through the normal progress of a seven year old.

We started the liquid multi vitamin today. That was a total pain in the ass to figure out. The doctors told me a multivitamin was fine but they said I had to get one with a low dose of folic acid. (Folic Acid is a B vitamin that makes Leukemia cells go nuts and multiply much faster.) I went to the health food store and the drug store and the amounts of folic acid in the vitamins were all over the chart. When I went back to the clinic I asked the doctor to give me a folic acid dose that would be safe. Back to the stores, nothing existed with the numbers that the doctor gave me. Finally I found a liquid multivitamin that had food sources listed and the vitamin content seemed fine. I printed out the label and brought it into the clinic and the doctor said a half dose would be fine. This product is manufactured by Source Of Life, and the name of the product is Animal Parade Children’s Multi-vitamin. One would think that an adult could take this too by just doubling the dosage amount. Finally a vitamin was okayed!

Being Stubborn Stops Reason

Saturday April 18th, 2008. Hurt Feet.

This has been a tough week. Kayla hurt her feet twice but will not wear shoes. Why are kids so stubborn? When one cannot reason with someone else because of being stubborn the the door has shut to any reason, that is the time to quit trying.

Wednesday Kayla got a mouth sore, it has progressively gotten more painful until yesterday, when she could not eat dinner. I believe this mouth sore showed up because Kayla has not had her supplements for three days prior to the mouth sore. The doctor had guaranteed that Kayla would get mouth sores after every treatment and by the time the mouth sore healed she would be due for her next treatment of chemo. Considering what the doctor said, Kayla has done incredibly well. When I took a good look at Kayla’s mouth sore. She also had small white spots and per another patient these spots are more sores forming. I decided to double the amount of glutamine immediately and so far no sores have actually formed. Of course Kayla did not put up a fight about the glutamine because she wants to get rid of the sores. That at least was helpful.

On the 7th of April a bone marrow was done and the Children’s Oncology Group will not give us the results. No matter how hard I tried I could not get them. Have you ever heard of such a thing? It seems very unfair to put a patient through such a painful procedure and never given them the results! I found this very upsetting.

Kayla has been asking to walk to the clinic and I have been telling her it is too far. I tried to convince her to practice more in the house first. While trying to explain this to her she told me “you don’t want me to walk”.

I lost it when she said this and just started to cry and had a hard time trying not to cry. It was as if the fountain overflowed. I told Bill, my husband, that I am tired of always being the hammer in the family. Bill got it and talked to Kayla and I, about the Leukemia being forced upon both of us. This was such a basic truth that we both felt a lot better. The day ended much better.

Sunday April 19th, 2008. 

We are going to try giving Kayla a protein shake at 11:00 at night to see if this helps the hunger in the morning. The cut off for solid foods is midnight if she is going to have a procedure the next day. Kayla is enjoying her protein shakes and her mouth sore is almost completely gone from giving her the glutamine powder again. Her lips are cracked and peeling, which is a sure sign a sign of dehydration.  I am trying to get her to drink more.

Kayla had a friend come over, so she at least was able to have some fun for several hours.

 

 

Escape through Books

Friday April 11th, 2008. Vitamin Strike.

Kayla went on strike with the vitamins so she did not get any today. Honestly, I don’t really blame her because she is taking a lot of stuff.

She did her school work and exercise. Went to her pediatrician to see if she had any answers to Kayla’s leg situation. When we came back we had dinner and then played paddle pool. It was a lot of fun. Kayla is being a doll. To me this proves how detrimental TV is for kids. When she watches very little she is nice and mannerly. When she watches a lot of TV she becomes argumentative and rude.

Monday April 14th, 2008.

We went to the clinic and it turns out that Kayla’s ANC count is 100. This means we have to be isolated and she cannot get her chemo. When we got home I had Kayla take a nap because she had two hissy fits. She must have been tired because she fell asleep right away. While she slept I was sanitizing the house. It is amazing how many things we touch on a daily basis.  

It looks like Kayla will be on treatment for a year. This is such a bummer. I am trying to stay positive but it is not easy. This missed week of chemo just adds more time to the whole program. I decided to go see a chiropractor tonight because my foot is still hurting from the fall I had with Kayla in my arms.

Last night I finished The Freedom Writers Diary. What a fantastic, uplifting book. Now I started a book called Slave. Maybe it is not a good idea but these books are a good escape for me. I liked Slave because her circumstances were horrible and she could not believe who kidnapped her. It is inspiring to read about bravery. Most of the time I am reading clinical trials or researching vitamins, etc. So a regular book is a time that I just escape mentally. I am also reading Your Not Sick Your Thirsty, which has some really interesting information and Smart Patient book. All of these books are good! Your Not Sick Your Thirsty was a good reminder to make sure Kayla drinks enough water. Cancer patients or any patients with lots of medications need to hydrate more so than normal because of the drugs taxing their organs. Keeping yourself educated and inspired is like therapy. I highly recommend it.   

 

 

 

 

 

 

I called the clinic to set up our appointment for next week in the operating room for her spinal chemo. I am informed that none of the patients can go to the O/R (operating room) before 12:00 noon. That is just the policy. This makes no sense to me. Anytime I have been a patient all of my surgeries were done in the morning. I cannot recall a single time where I waited for hours. This is especially trying for kids to be without food for so long. The last time that Kayla was waiting she was crying of hunger by the time she was taken to the O/R. Perfect example of stupid bureaucracy making policy that discounts their public.

 

 

 

 

 

 

 

Queen for a Day

Saturday April 5th, 2008. www.qfad.org

Kayla had a wonderful day today. A group of ladies came over from Queen For A Day organization. This is a national organization to build the esteem of little girls and they also have something similar for boys. These wonderful people came over and set up arts and crafts for Kayla and Hannah. They also did nails, and makeup. Both children were given feather boas, a beautiful tiara and a wand. How could you not love getting pampered for hours along with several gifts. This was really great! We met Hannah when Kayla was first diagnosed and she has been a source inspiration because she is always running around the hospital laughing. She makes going through chemo look like it is easy.  

Later some friends came over with their four kids and the house was crazy for hours. At one point Kayla was bouncing up and down on a chair saying “I am having so much fun!” It was almost like the old days where we had lots of activity happening.

Sunday 6 April 2008.

Friends came over to play with Kayla and she was busy all day. I have to tell you that visitors are so crucial to us! It makes us feel as if we are part of a normal life. It is like a gift when friends come over to visit. Most people do not realize how consuming cancer actually is. Most days Kayla and I are at the clinic getting chemo or we are at home, with very few options for entertainment. Tomorrow Kayla has to get bone scans, a bone marrow aspiration and x-rays, such a bummer. This is the other reason why visitors are so important, they take our attention off of crappy things!

Monday April 7th, 2008.

Our day started around 5:30 am to get ready for our trip to the clinic and hospital. Because Kayla cannot eat anything until after her procedures, I pack lots of food that she can eat as soon as she wakes up. One of the procedures is a bone marrow. Those make Kayla very sore for days. No matter what the results are of the marrow, her treatment plan does not change at all. Which is why I wonder why she has to get so many. Do you have any idea how huge the needle is? Did you know that they have to push the needle into and through hip bone to get the marrow? It sounds so simple but is actually quite painful. We got back home at 5:00 pm. It was a 12 hour day from start to finish. Kayla weights 60 pounds.

At the clinic one of the mom’s came up to me and told me that lumps showed up in her daughters throat. The mom tried to act normal but you could tell the anxiety level was out the roof. I could feel the worry she was going through waiting to hear the results of tests. Those kinds of wait periods are interminable.

Wednesday April 9th, 2008.

It was a relief to go to the dentist and get a bad tooth fixed. It has been bothering me for a while. The only reason I went is because it was getting bad. Otherwise I would have put it off.

The physical therapist came today and he was very impressed with Kayla’s improvement. He showed us a new round of exercises for Kayla’s legs. We have two months before we start the rough cycle of chemo. This feels like I have a window of time to help Kayla rebuild bone density and overall strength. Right now Kayla is only on three different chemo’s, Intrathecal methotrexate (in the spinal fluid), Peg Asparaginase (leg shots) and IV Vincristine. This is a relatively minor amount compared to the rough chemo, which has eight different chemotherapy drugs.

We watched on TV a guy by the name of Randy Pausch, a professor at a University who has Pancreatic Cancer. He is such an inspiration this guy – going out and telling people to follow their dreams while he is dying of cancer. I am going to buy his book

The next goal with Kayla is to bring her joy as much as possible by doing arts & crafts, cooking, etc. Today we pressed some flowers and she loved it.

Thursday April 10th, 2008.

The cartoon channel is completely insane and Kayla has started to become a monster from watching it. She has been rude, and insolent, until I snapped and told her no more TV. Man she got so upset and cried in her room for a long time. After dinner our sweet girl came back, we hung out together and then Kayla went to bed for the night.

 

 

 

 

 

 

Sunshine amid some Darkness

Saturday 29 March 2008

Kayla did lots of exercise today, crunches, weight ball, stretches, & resistance. She started taking the Cal-Apatite today as well. I decided to have her get some sun everyday because she looks incredibly pale. Florence Nightingale is a proponent of fresh air, sunshine, and cleanliness, so I decided to try it. The other point is that I did not have Kayla use sunscreen because I want her to absorb the vitamin D for her bones. We have a screen over the pool, which blocks 15 to 20 percent of the rays anyway. I placed a timer next to Kayla and we actually started with four minutes in the morning sun because I do not know how much her body can take with the chemo. We’re playing it ultra safe. When the timer went off she begged to stay longer but I had to say no.

Sunday 30 March 2008

Kayla read 15 pages today! Kayla also walked from our family room to the office with her walker.  While she walked she screamed out at her neuropathy I HATE YOU! And she just kept walking. I am so proud of her!

Monday 31 March 2008

Clinic day for Vincristine and PEG, these are the two chemo drugs for today. Vincristine stays in the body approximately a week. PEG is the inter-muscular shots in the legs. Kayla was all set up and ready for the leg shots. She counted and then the nurses placed the needles in her leg. Kayla got hold of one needle and was plunging the medicine and the other nurse just plunged the medicine into her muscle with the other needle really fast. This was quite a shock for both of us, but really for Kayla. I do not understand why this happened. Kayla sobbed afterwards, partly from shock and also from the pain of it. I have had inter-muscular shots and it really makes the world of difference if the medicine is allowed to go into the body slowly. The difference is night and day with regards to the pain of it. When it is plunged slowly there is mostly just discomfort and it gives the body time to accept the liquid. Plunged fast, your talking serious pain because the liquid is being forced into muscle fiber and forcing it apart. I bleeping mad! It’s times like this that a person could get violent with the stupidity and ignorance of a nurse whose treatment is like treating a thing instead of a human! This will not be allowed to happen again. UGGGGH – shit makes me really crazy.

Kayla’s Hemoglobin is 6.8 so she has to get a blood transfusion. Normal hemoglobin is 8.0. The transfusion will take 4 hours.

The oncology research nurse (I love her!) sent out emails trying to get information regarding bone repair during treatment. I had also given her a copy of the book Comprehensive Cancer Care and she loved reading it. My hope is to try and open some of the views at the clinic to alternatives and supplements, etc. She is helping me on this little project and I bring her several copies of the book and then she hands them out. Anyway, she gave me a copy of an email from a doctor at Harvard, and here is what it said.

Hi,  

This is certainly an unusual presentation, although the infiltrative disease itself can cause osteopenia, and the methotrexate and steroids are going to exacerbate it. When you say you did a scan, was that x-ray or DXA? If a DXA was done, she should have one in a center that can compare it to her bone age {which should be done at the same time, if not done in the prior six months) and has appropriate age-matched controls.

Given the unusual fracture presentation, I would check calcium, phosphate, magnesium, albumin, alkaline phosphotase, PTH, 25-hydroxyvitamin D, ad 1., 25-dihoxyvitamin D levels; as well as urine calcium:creatine.

Calcium and vitamin D should be maximized for everyone. At her age, she should be getting at least 800 mgs elemental calcium daily (in divided doses). Previous recommendations about vitamin D intake (400IU) are probably too low, and she should get more like 800-1000 IU.

If she has osteoporosis and has had 3 fractures, there would need to be consideration of the use of biphosphonates, but I do not know about use concomitantly during Leukemia treatment.

I have cc’ed the Director of our Bone Program for additional insight, as well as whether she knows who is an expert in pediatric bone disease closer to you in St. Petersburg.

Regards,

Because I do not have permission from the author, I cannot publish their name. Plus when this letter was given to me, the names were blackened out, because this was communication between medical personnel. This letter made me very happy as Kayla is getting 1000 mgs Vitamin D a day and I believe her calcium ratio is correct as well. So again, I am on the right track. Its nice to be validated by authorities while also getting additional insight into other supplementation.

 

 

 

Days of Drama

Monday March 24th 2008

What a horrible day today. I was cleaning the house as fast as I could and I stepped on Kayla’s foot by accident. She cried pretty hard and I hope I haven’t broken something in her foot. Later she was carrying a book in her mouth and I grabbed it to pull it out of her mouth and her tongue was in between the pages. When I pulled the book I pulled her tongue and she was bleeding a tiny bit. These two incidents made my stomach churn. In between these incidents Kayla did an art project for a long time and also school. It would have been a great day without the accidents. Luckily her foot is not broken.

I went to a computer class on Photoshop Elements. Honestly, I am not retaining any of it but at least I get to go someplace for two hours.

Wednesday March 26th 2008

 Went to the clinic and spoke to Dr. S. about salt, potassium, and cell salts. My concern is that the Dexamethazone (steroid) causes severe electrolyte imbalances. The doctor approved one salt and potassium a day. Then she pointed out that because chemo changes the sense of taste, what I am interpreting as salt depletion could just be a desire to have more taste. She directed me to try more spices on Kayla’s food and she was right. It is still good that she approved the salt and potassium because I can use them if needed. We live in Florida and one can become salt depleted very easily. I do not want to use Gatorade or a product like it, because we have to be careful of sugar in take, as one of the side effects of the steroids can be diabetes.

Kayla got her chemo, Ara-c and we were given a prescription for Mercaptopurine, an oral chemo that Kayla will take every night. 

The physical Therapist came over and showed us exercises for Kayla’s legs. Turns out his wife is a Chinese Doctor and he is going to check and see if she can help us when Kayla is on the steroids.

Thursday March 27th 2008

Kayla was scooting on the floor and while she was turning, banged her foot pretty badly on the door jam. She thinks she broke it. Back to the doctor for X-Rays. The bummer here is that the X-Rays showed how translucent her bones are, so much so, that you cannot tell if there is a break. There are a couple of spots on the bone where it hurts but it is not definitive. I am going to research how to get her bones built up, like what supplement will help her.

Friday March 28th 2008

Today we had a terrible scare while carrying Kayla to the car; I fell with her in my arms. As I went down, everything went into slow motion and I was trying to twist my body so that she would land on me instead of the ground. Most of her body ended up being cushioned but for her head. She hit her head pretty hard on the concrete driveway. Miraculously, she only had a bump on her head and nothing else. I cannot even begin to describe the adrenalin that coursed through my body. It took several minutes to just calm down and then get up and get us both into the car.

Last night I found a good supplement manufactured by a company called Metagenics. I was able to print out the label for their supplement, Cal-Apatite, Complete Bone Nutrition. www.metagenics.com for information about the supplement. www.MetaSupplements.com (for the actual supplement, it is not cheap.) When Kayla was first diagnosed we could not do any supplementation at all because her system had a lot of leukemia cells proliferating at a rapid pace. Once chemo was started, we had to wait until remission before any supplements could be given. Otherwise the cancer is being fed, not the person. We are now long past that point and I went over this with the doctor at the clinic. The doctor agreed and said she would check with the study chair regarding a calcium prescription to help build Kayla’s bones. We start steroids again in two months and I am a bit freaked out about the effect they have on her bones. She also is on the steroids for a staggering twenty-one days. I am terribly worried that her bones will deteriorate at a rapid rate. I am very happy with the conversation with the doctor. I feel that all of my hard work researching and learning all of this stuff has really paid off. She not only listened but agreed with my argument.

As an aside when Kayla told the nurse about our fall on the way to our car, I broke down and sobbed. Her speaking about it brought it all back and I became completely overwhelmed with emotion. How embarrassing.

When we got home, we took the night off and I had a welcome glass of wine and just went to bed completely spent. Of that, I do not have a picture! So there!

 

 

 

 

 

 

Joy, Despite Cancer

Tuesday March 18th, 2008

Kayla weighs 61 pounds. It is good that her weight is holding steady. We have an over night stay at the hospital for Mercaptopurine, Asparaginase, and Cytoxin, all are chemotherapy drugs. We stay overnight because these particular chemo therapy drugs can be quite toxic especially Cytoxin. Kayla is doing great despite all of this. She took all of her vitamins and she was able to do some of her reading. While at the hospital I met with a Neurologist regarding the neuropathy (burning pain in her feet) that Kayla is still having quite a bit of trouble with.

Later in the night I gave Kayla half a Melatonin and she slept like a rock. Normally at the hospital and with the chemo she gets revved up and does not go to bed until 2:00 in the morning. But with the melatonin she went into a deep sleep right away. I really think all of the vitamins are paying off. We can go home in the morning and then we will be at the clinic for the next three days for more chemo. Yes, this is a big, big load of chemo!

Wednesday March 19th, 2008

Before we left the hospital Kayla wanted to go to the playroom. While there, she met a boy in a wheel chair who is an amputee. Of course she asked what happened to him and he told he had cancer and they had to cut off his leg to get rid of the cancer. You should have seen her face, she was shocked. When we got home Kayla tried to stand four times even though this was painful for her. I asked her why she was trying so hard and she said she did not want to end up like the boy. No matter how many times I tried to tell her that this will not happen to her, she just kept working her leg. Even though it is sad, it is really good for her to see other kids who are sick and hear their stories. It is easy to feel sorry for ones self and seeing such kids really puts things into perspective. Our situation is not that bad!

Sunday March 23rd, 2008

We went to Jacquie’s house to use her heated Jacuzzi/pool. Kayla loved it and she dove into the swimming pool, which is very cold. You can see the joy in her face because this is the first time in three months that she has had freedom of movement. Although she is young she learned how to snorkel last year and is a strong swimmer. So you can imagine that for such an athletic girl, now with cancer and limited mobility, the pool was total freedom. It is the very first time since diagnosis that I got to see joy radiate from her face and body.

After the pool, Jacquie introduced us to Wii, a phenomenal interactive game used on your TV. It was quite something. Kayla loved the boxing game that she could do while sitting down. It was a wonderful day!

 

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