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.

 

 

 

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Deb Witter

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