Archive - September 4, 2017

1
Being Stubborn Stops Reason
2
Escape through Books
3
Queen for a Day
4
Sunshine amid some Darkness
5
Days of Drama
6
Joy, Despite Cancer
7
Break Time!
8
Children’s Cancer Center
9
New Strides
10
Frantic Juggling

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!

 

Break Time!

Tuesday March 11th, 2008

Went to the clinic and Kayla’s ANC (Absolute Neutrophil Count) is only 500. This means the count is too low for chemo so we only have the visit from today. No more visits to the clinic this week. Joy oh Joy! I do not care if this lengthens treatment time because it gives her more time to rest, heal and have a break. I asked how much longer is treatment? They told me NINE MORE MONTHS! And that is if there are no interruptions in treatment, meaning infections, hospital stays and things like that. They told me that the chemo is very tough. I am so bummed. As soon as we got home I just crashed and Bill (Dad) took over.

The good news is that the Doctor approved Melatonin, CO-Q10, and Green tea. We will start these supplements immediately. All of this information about these supplements I copied from the book Comprehensive Cancer Care. This book is becoming my cancer bible because it has such useful information. I love it! No other cancer book has as much useful information as this one and let me tell you I had a stack of cancer books three feet tall, with 99% of them being completely worthless. Here is the link for the book .

Wednesday March 12th, 2008

This morning Kayla woke up very nauseated and we did the Zofran and a bit later coke but they did not work. She went to bed and slept for about four hours and then watched movies.

Thursday March 13th, 2008

A friend of mine read me a letter from a Dr. Denk who said that with Melatonin, if the dose is too high it will make you feel groogy or drugged. Because of this information I cut Kayla’s dose to .75 mgs at night and mine to 1.5mgs. We could only find 3 Mg capsules so I used a pill cutter to cut them so that I could get these smaller doses. That was the perfect solution. Please note, Melatonin is not recommended for children or people under the age of eighteen but because of chemo Kayla cannot sleep and I do not want her on additional narcotics for sleep. Our Oncologist felt that a low dose of melatonin would be safe for Kayla.

Kayla complained about burning in her cast. I did some research on the Internet and burning is not a good thing. It could mean that the skin is becoming infected and if so, infection can spread very fast in a closed space with little air. If possible it recommended cast removal ASAP. After her school we went to her bone doctor in Tampa. When he heard Kayla’s description of the pain he decided to immediately take the cast off. When it was removed we saw raw patches of skin. Sounds crazy but her leg seemed to say, thank you I desperately needed the air!   :  )

Kayla called her Dad to tell him the cast was off. What a relief, no casts! This is the first time in three months without a cast!   When we got home we decided to just take it easy and watch movies.

Saturday March 15th, 2008.

Kayla has a bad headache. We gave her morphine and the headache went away. (We are not allowed to give Kayla any over the counter medications, so morphine is the only pain killer allowed.) In the evening the headache came back. Again, morphine was given and we watched a movie together. Kayla ran a low-grade fever of 100.7 so we had to keep checking her temperature every hour. She has been nauseous all day. I was rubbing her back while she was lying down and Kayla said to me “mommy, if something happens to me, I’ll still love you”. OMG, hearing words framed like that really freaked me out! I decided to tell her about a deal Bill and I have, which is,  If there is an after life we would like to meet again.  Kayla asked if a person can be an animal in their next life and I said that I did not know but I assume anything is possible. Of course being an animal might not be that fun because another animal can eat you… All the while I was rubbing her back. Dad came and took over the back rubbing and I went to walk the dogs. To say that I was freaked out was an understatement because Kayla has never spoken of bad possibilities before. Maybe it was a silly coincidence, I do not know…

For those of you reading this and disagree with me talking about a possible after life – don’t give me any crap. I had heaven, hell and purgatory shoved down my throat at an early age where my mind really could not comprehend such things. In some cases I had nightmares. Right now, I want my daughter to have no fear of death nor any preconceived ideas. I only want her comfortable and unafraid. She has enough to deal with on a daily basis without having to worry about her soul and judgements from an almighty god.

 

 

Children’s Cancer Center

Thursday March 6th 2008

 Kayla did fine with the Methotrexate in her spinal fluid and over her brain. Her weight is 64 pounds.

I decided to go to the Children’s Cancer Center for the monthly support group they offer. I would really like to hear other parent’s tips and see what is out there. This is a place that has all types of kids going through cancer. It was started and funded by a family whose daughter had leukemia. They wanted a place for families to be able to meet, talk, have activities for the children, etc.  I am really excited about seeing, learning and attending the support group for parents. Our kids will play downstairs and have the option of doing arts & crafts with supervisors and volunteers.

After going round the group with introductions,  I asked the group of parents about alternatives and or solutions they had found for lessening side effects, etc. Only one parent was doing something and it is called Cell Quest, which I will check out. Instead I got to hear about Neuropathy that is much worse than Kayla’s and another parent whose son is a bone breaker also. The list of broken bones this child has had is absolutely horrifying.

The Cancer Center itself is a great organization. They have many great activities for the kids and many resources. I was just so disappointed by the lack of information from other caregivers/parents who have been going through this far longer than I have. It was completely depressing. At least I now have a complete certainty that I am doing the right thing because a few of these other kids I heard about are having a very hard time, much more so than Kayla.

Kayla has been walking for about four days but this morning the neuropathy came back and she was crying in pain. I talked to her about fighting and doing it anyway. She did it and we both ended up crying. Then I gave her a big pep talk about working hard to win this fight. Working hard means doing school even when your head is foggy and doing exercises, etc., that is fighting the fight.

We took a walk with the dog (she was in the wheel chair) to a small pond nearby and Kayla threw rocks in the pond. At least she was outside in the fresh air. It was a bit of an emotionally tumultuous day, but we got through it.

I put that photo there because it just seemed to fit. Like a “to hell with it” kind of attitude. That is how we felt.

New Strides

Monday 3 March 2008

Kayla is doing so very well. It feels like we are slowly coming out of what we consider hell, to a new kind of normal. Or rather sort of normal. She did not take her vitamins one day and then her meds made her sick. She thought it was the vitamins that were making her sick. Then we changed the vitamins to a protein shake that is made in the morning and she drinks it twice a day. This is working out well for now.  I am learning that with chemo the body reacts differently and things can change fast so we are trying to go with the flow here. Kayla and I are working together to try and figure things out with experimentation all the way.

Today she walked for the first time in two months! She did ten steps with the walker. No neuropathy pain. I feel like I am coming out of a long dark tunnel. Jees, it was so rough with the broken legs, the injured back, new chemo. There were weeks of pain for Kayla, which made it really rough for all of us. Now she is able to do school work everyday. She is not allowed to watch TV until her schoolwork is done. Everything just seems great. We go to the clinic tomorrow for IV Vincristine. Kayla is eating lots of fruits and thankfully she loves salads. Last night we had a large chef salad and it was delicious. Kayla is sleeping through the night and there are NO complaints. hallelujah.

Bill and I talked because I realized that I was very resentful of him due to the fact that I was the only one going through torture at the hospital with Kayla. He was very understanding and I did not realize how resentful I was until a couple of days ago. Speaking about it was a relief and of course he was very understanding. It was irrational to think this way because somebody has to earn money. Sometimes I wish we could trade places and I go to work instead of being a full time nurse. Really it is just a desire to escape what I consider horror. Yes, she is doing better, she things are under control – for the moment. But our situation is what it is and it gets hard to keep dark thoughts away.

For now all is fine and we are taking everything one step at a time.

 

 

 

 

 

 

Frantic Juggling

28 February 2008 Continued.

I was frantic last night because we ran out of 6-MP (chemo) I gave the last dose last night. I then called the after hours clinic. This morning the nurse called and said that the 6-MP was to have ended Monday night! I gave it to Kayla Tuesday and Wednesday night. Maybe that is why she is also having allergic reactions that are not going away. Her face is burning and itching badly. A friend told me that there is Benedryl cream that I can buy. I am going to do that now. The only thing that worked was vitamin E oil.

My days are filled with feeling completely overwhelmed. Trying to keep track of and juggle all the chemo and drugs, cook good food, manage side effects, keep our house germ free, while trying to keep our 7-year-old somewhat happy despite all of this hell. Is near impossible. Being a full time cheerleader, nurse, dietician, housekeeper, etc., is quite hard. Actually much harder than I ever dreamed.

I have promised myself I will figure out a system and get all of this under control! In the meantime, I do the best I can and if there is a f**ck up – oh well, move on. I cannot punish myself for mistakes that happen. That will just slow everything down and make me feel horrible.

Sunday 2 March 2008. The only new item is the fact that Kayla is refusing to take her supplements. Okay. Whatever. We are going to continue the Wheatgrass because she cannot taste it. Here is the email asking the Doctor about wheatgrass from his website.

Dear Sir,

I would like to find out the right dosage of wheatgrass for my daughter who is 7 years old and has Acute Lymphoblastic Leukemia.  She is doing an intense regiment of chemo right now, which includes 6-mp everyday, vincristine weekly, Methotrexate via spine.  We just finished ara-c for two weeks, break for two weeks, and then start again with the ara-c.  The oncologists approved wheatgrass supplementation.  I ordered it because the ara-c will lower her blood counts to zero and then we will be worried about infections happening.  I am assuming that the wheat grass will help boost her system from infection.

Sincerely,

debra witter

Posted: 28-Feb-2008 12:58 PM | Reply 

Dr. Chris                                                                                          

Posts: 77

Thank you for your enquiry. In my own experience, patients often experience a low side effect profile if they take wheatgrass during chemotherapy. If possible, it is better they take it prior to and after treatment as well. Many studies show positive effects on blood element production in anemia by cereal grasses, and this may be important when the marrow is suppressed by the cytotoxic drugs used in chemotherapy.

In an article “Immune system components altered by a food supplement” by G. Wagner et al at the 1991 Annual Meeting of the American Association for the advancement of Science, February 16, the authors cited a double blind study comparing 16 students taking barley grass juice (which has similar effects to wheatgrass and other cereals) and 16 taking a placebo over a period of 10 weeks. The barley juice group displayed significant improvement in their immune system cells compared with the placebo group.

This could be important not only for leukemia and other similar blood disorders, but for a number of immune-related conditions as well.

I would greatly appreciate you keeping us up to date on your daughter’s progress and on behalf of all our contributors, wish her well and a speedy return to good health. One capful (5ml) of the Supershots (if that is what you intend to give her) should be an ample dose.

If you prefer to communicate with me privately, please do so via info@drwheatgrass.com.au

 

Kind regards,

Dr. Chris Reynolds.

 

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