Tag - methotrexate

Harsher Realities
New Resolutions

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!



















Friday 25 January 2008

Urine going back to a normal color.  Kayla now takes Omega 3,6,9 oil and Parsley tea.  The tea is specifically for the kidneys. So simple to make. Take 1 bunch of fresh Parsley from the grocer. Put a pot of water to boil on the stove. Rinse Parsley. When water is in a full boil dump in the parsley and time for three minutes. When time is up remove pot from heat and allow to cool. Throw away the parsley and the remaining tea will be a pale green color. This tea is gentle and wonderful for kidney/liver health. We will do this whenever Kayla’s skin starts to turn yellow, a condition called Jaundice.

Definition of Jaundice: noun 

  1. a medical condition with yellowing of the skin or whites of the eyes, arising from excess of the pigment bilirubin and typically caused by obstruction of the bile duct, by liver disease, or by excessive breakdown of red blood cells. From Dictionary.com
    In addition to that definition I feel that the stress of chemo can also cause Jaundice or skin yellowing because the body has a hard time digesting such hard chemicals. The parsley obviously helps.

Saturday January 26th 2008.  Kayla slept most of the day today.  Friends came over in the evening and it was so nice to have adult company.

Sunday January 27th 2008.  Kayla was up at 11:00 am and then went back to bed because she had a stomach ache,  Later a friend came over and she had the chance to play with another child.

   Monday January 28th 2008.  Clinic day!  Kayla got chemo at the clinic and while we were there the doctor approved amino acids, Glucosamine & Condrointin for her bones and we are trying ant acids for her stomach aches.  At night Kayla was up at 2:00 and 4:00 in the morning in pain with her stomach.  She would not let me try and give her something for the stomach pain.  The amino acid supplement that the doctor approved is specifically Master Amino Acid Pattern.  This contains the 8 amino acids that are essential to life.  A chiropractic friend recommended these saying that they will help Kayla’s liver.  The website is www.bodyhealth.com

We have not seen results from the Master Amino Acid Pattern supplement yet, will let you know.

Chemo Kayla is on or will be on and their side effects;

Cytarabine: affects liver, nausea, low blood counts.

Vincristine: constipation, neuropathy (nerve pain), abdominal pain, vision.  

Asparaginase: liver and pancreatic abnormalities, high blood sugar, thirst.

Methotrexate: kidney damage, headaches, mouth sores.

The above is just notes I wrote for myself on the side effects of these chemo’s so that I could do further research on them.  It actually makes me physically ill when I read this stuff.  It is nerve racking to say the least.

New Resolutions

I was able to sleep a whole night for the first time since the 4th of this month.  The result is that I feel exhausted.

Kayla is proud that she is able to use the commode and not having to wake us up at night. 

The teacher came today from the counties Home Bound Program.  Her name is Kate, and she is also a cancer survivor.  Lovely, lovely, lady.  She and Kayla hit it off instantly.  I was so pleased to find out about the home hound program the county offers as one of its services.  The teacher comes to your home four hours a week and teaches the child.  We lucked out and got a gem of a lady.

Spoke to Dr. S. and asked her point blank what can we expect in the next months.  My tone was angry because they never told me that Kayla would be yellow, ill and sleep for many hours a day.  Sometimes when she sleeps I check to see if she is alive.  Freaky!  Dr. S., said that the next months are rough.  The chemotherapy drug methotrexate causes mouth sores and by the time the mouth sores are gone the next treatment is due.  Kayla will get liver and kidney tests as these organs are taxed by the chemo.  She also said that Kayla will get better after the rough chemo.

My resolve is to keep researching solutions to the side effects and just keep going!  My mission is to keep Kayla as free of side effects as possible and also as happy as possible through this journey.  That is the best that I can do!

We started the B2 & B6 today and it seems to be working. We also started the Aronia berry juice.  This is a concentrate from the Aronia berry.  This berry is very high in natural antioxidants.  The doctors approve of juice or berry derived products.

Kayla tried to walk and sobbed in pain.  We resorted to light exercises in the bed with weight ball of 2 pounds.  This definitely lifted her spirit.  She did 10 reps of each exercise in bed.

While at the clinic today  we spoke to the Doctor about Versed, the forgetter drug that is no longer working for procedures.  The Marrow on Monday was very rough, the worst yet. (Picture above.)  It was decided to do all procedures in the Operating Room, and Kayla was adamant about this!  The medical staff tried to tell me that the bruising on her back is due to low blood counts but she has had procedures before with low blood counts and did not end up so bruised and sore for days.

Later I told Kayla that she is acting like an adult when she makes decisions about her medical care.  She asked me why and I explained that that is what adults do, decide what they want and that is what she did.  She was beaming about this.

Resolve; no more sadness!  From now on I am going to research all the drugs coming up in the treatment plan and figure out the alternatives before we start.  This way everything is prepared before hand!

One has to be prepared for anything when dealing with medical situations.  I am trying to not be surprised and prepared while giving her the best care possible.



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