Free Help For Cancer

Getting diagnosed with any disease is very overwhelming and if the patient feels very ill these feeling are compounded that much more.

I remember a doctor taking the time to talk to me about Kayla and I could not understand a word that he said to me. I was resistant to learning the medical jargon, stupidly assuming that I could get by without this understand. Man-oh-man was I wrong. Refusing to understand medical jargon prevented me from becoming a team player.

When I finally decided that I had to learn everything I could about Kayla’s cancer, I hit the books and the Internet in every spare moment that I had.

Knowledge is Power

Everyone has heard this statement “Knowledge is Power,” but I wonder how many see the application of it with their own illnesses? Much to my delight I discovered that 99% of doctors really appreciate patients who take responsibility for their care through diet, education, and many questions. After all, this proves that you are all on the same team. Now the doctor has the opportunity to work with an actual team mate instead of just a participant. This point, I feel is a very important.

Learning

The easiest way to learn is through the Internet. I would have two pages open. The first page would be a medical study or research on a specific condition. The second page was for a medical dictionary. This way I could go back and forth easily. If I was studying medical papers I would use the medical dictionary on the Internet and write the definitions in the margin of the paper for easy reference. Then I did not have to memorize all of the definitions involved.

If important information was found I would print it out and bring it to Kayla’s doctor for a consultation.

Any new complication, side effect, drug, medical term, organ, etc., I would research in this same manner.

Consequences

There can be many consequences to treatment. Kayla was sensitive to steroids and these drugs had serious side effects on her bones. After months of treatment her bones continued to worsen. All of the doctors on our oncology team said that there were no options available. After going to a second hospital and running into the same problem I put together the following letter and I sent this letter, along with medical records to a couple of medical facilities for help.

Debra D. Witter

7321 A Small Road

Any Town, USA  xxxxx

Cell xxx-xxx-xxxx

To Whom It May Concern,                                                                                                                                                                                                   November 10th, 2008

                                                            Patient: Kayla Witter

            Kayla Witter was diagnosed with Acute Lymphoblastic Leukemia on the 4th of January 2008.  Since diagnosis she has had problems with her bones that is getting worse over time.  My argument is that she is the ONLY child in her age group that has exhibited the severity of problems with her bones.  NO other child in two hospitals under cancer treatment has exhibited these problems. 

            Attached is a summary of her bone history and the doctor’s notes.             

            On October 23rd we traveled to Miami to have Dr. Marie Williams, D.P.M., P.A., give us a second opinion regarding Kayla’s bones.  Dr. Williams wrote the following in her report; Marked ankle equines bilateral.  There is severe pain noted on palpation of the dorsal(back of the foot) aspect of both feet and ankles.  There is severe non-pitting swelling localized to the dorsal forefoot and both feet. X-rays reveal severe osteopenia (is the start of bone weakening or thinning)of both lower extremities which is symmetrical in the tibia, fibula and metatarsals. There is an area of Osteonecrosis (bone death) in the body of the talus of both feet and posterior superior aspect of the calcaneus, is consistent with clinical signs of Osteonecrosis of bone.  Report attached.

            November 3rd, 2008 a DEXA scan was done and the report findings state;

1.    Whole body data set – osteopenic.

2.    Lumbar spine data set – within normal range, though near osteopenic.

3.    Left hip data set – osteoporotic. 

            Kayla has recently started to complain of back pain.  It has become quite evident that the bone breaks and ospeoporosis is a severe problem that is becoming progressively worse.  Originally Kayla was on 10 mg Dexamethasone (steroid) for induction and subsequent phases of chemotherapy.  These resulted in screaming pain for many hours.  From my own investigations, I found a Nordic protocol that used Dexamethsone at 6.5 mg without compromising survival statistics.  Following the lowered steroid dose she had screaming incidents of pain when the pulse was completed.  

            On December 1st Kayla will start Augmented Delayed Intensification II (heavy phase of treatment).  The proposed dose of steroids will be Prednisone at 60 mg per day.  This dose is equivalent to the Dexamethasone dose and it is my belief that it will cause incalculable damage to her bones. 

            Further research has lead me to the understanding that Dexamethasone was implemented widely after a study of its use increased survival rates by 5% from 2000 to 2005.  Recently, (May 2008) due to Osteonecrosis showing up in high numbers, the Children’s Oncology Group announced that any patients older than 10 years of age would use Dexamethosone discontinuously to prevent associated bone problems.  In April this year, enrollment in AALL0331 was suspended “due to significantly higher than expected reports of Osteonecrosis particularly in patients who received Dexamethasone during induction.”  Kayla was one of those patients on Dexamethasone during induction. 

            Here is the big problem I am trying to solve and it is understandably radical, but I feel we are running out of choices.  Reading medical data about collapsed hips and the subsequent emergency surgeries is horrifying.  Or, having to have joints replaced is also very scary. 

            The doctors that are treating Kayla for ALL will not consider a reduction in steroids, even though she has had problems with her bones and another doctor has substantiated the beginnings of osteonecrosis.  Kayla’s left hip has significant osteoporosis and I am very afraid of what is going to happen if the steroids are continued at the recommended dose even though she is demonstrating what I would interpret as toxicity to the standard dose.  Keep in mind that she will have 18 months of maintenance with steroids every month, instead of once every other two months!  All of her BMD (bone mineral density) statistics reduced markedly since April 2008.  See Attached.

             I would like a second opinion regarding this matter.  Here I am told that lowering the steroids could reduce her survival statistics, yet, when I did some research I found older studies with the use of prednisone and the survival statistics still looked good.  We also have quality of life issues with pain and the ability to walk at all.  Going through chemotherapy for a year is very arduous and complex.  Adding bone breaks and intense pain from stress fractures makes the journey that much more difficult.  I need someone to look at Kayla’s history, and tell me what would be recommended.  Again, it is my belief that Kayla’s steroid dose should be lowered (because of toxicity) by at least one third so that she is still getting the steroids, but not at the higher dose which has proven destructive to her bones in the recent past. 

            Please understand I am not medically trained at all.  I am just a mother who loves her daughter more than anything in this life, and yes, wants to save her life through these treatments but not at a cost of compromising her quality of life.  Any input that could be given to me on this matter would be greatly appreciated. 

                                                                                                Sincerely,

                                                                                                Debra Witter

The purpose of showing you this letter is so that you can see what the research resulted in. We ended up getting two consultations from this action and the answers were the same. This gave me the confidence to switch to a new hospital.

The new doctors skipped the last two months of heavy treatment based upon recent studies that indicated this second phase of heavy treatment “was not advantageous to the patient.” Kayla’s quality of life improved immediately. Now almost a year later we are so very happy with Kayla’s care and the whole oncology team. There still have been bumps in the road but none that were caused by our health care team.

Doctors Doctors

All doctors are not created equal. Attitude can be a major benefit or stumbling block and it all depends upon which one your doctor exhibits. There have been several doctors that I really liked and appreciated. These were the qualities that stood out for me. Able to communicate in a forthright manner. Answered my questions especially when I prodded for more information. Never made me feel stupid or incompetent. Had compassion and strength.

Two of our prior hospitals had great doctors but the head of the oncology team out voted what the doctors wanted to do. Because of this, I felt that I had to leave. Even though we left I still appreciated all of the staff and the care that we did receive. One of the hospitals still cares for Kayla when she has to be admitted for illnesses.

It takes a lot of understanding to have to make major decisions regarding your care. Not only will you have to know what your dealing with but also you will have to judge whether or not to continue care at the current facility or pursue another. Should you choose to seek alternatives, do not announce it and do not burn your bridges. Go about your research quietly and leave the current health care facility on good terms. You never know if you may have to return to the facility that you just left.

All doctors that I have met are very dedicated to their work. They had to have an incredible desire to go through the hell that they went through and major debt to become a doctor. Always treat them with respect even if you disagree. After all you are expecting someone to help you that may have been on call for most of the night or weekend and is keeping this fact hidden from you. It is just plain foolish to treat a doctor in a poor manner. I am writing this because I have seen this behavior happen too many times. It is especially upsetting to any of the patients and their families who can hear the upset.

Different Treatment

I was very surprised to find out from other patients very different rules for the same disease. One patient was allowed to take herbs while on treatment – at our facility herbs of any kind were not allowed while on heavy chemo. Another family told me that they were required to only drink Reverse Osmosis water, which they needed to install in their home or only buy Desani bottled water. They were also restricted from fruit and fresh vegetables. We did not have the water or the fruit and vegetable restrictions. Our doctor instructed us to wash all fruits and vegetable and to be careful with berries of any kind as they could harbor fungus or mould that is not visible to the eye. These are examples to show you the wide variables from hospital to hospital, so ask questions and if something sounds odd question the doctor for a study or materiel that he is placing this order upon.

The letter above for second opinions also illustrates this point in that two hospitals said  Kayla’s steroid dose could not be lowered when in fact this was just not true.

Resources

There is a page on this site for resources. In your hunt for answers or help you will need to be resourceful in your search. I asked friends for help, two friends were doctors in different specialties that helped me out a lot just by being a sounding board for my ideas or conclusions. Another friend has a brother who is a pharmacist, I was not shy in calling her and having her write down questions to ask her brother and so it went.

Conclusion

When Kayla was diagnosed I had no idea of the rocket ride we just got on. It started so fast with highs and lows almost immediately. It is pretty important the you find and define your goals early in treatment. Grabbing hold of the reins as soon as possible will help to empower you. Sometimes finding answers can be very difficult and lengthly but I have always insisted that there had to be an answer for any problem that presented itself and I was willing to keep searching until one was found. This has stood the test of time for us and I hope that this article gives you the desire to do the same.

Post script: If I had not gone through the lengths that I did, I am totally certain that Kayla would have ended up unable to move and bedridden with severe pain due to the osteoporosis that was spreading to her spine.  This is a matter of quality of life.  Although we went through major hell to find all the answers, the end result was taking educated risks to preserve her physical state while making major changes in her treatment.  Life is a risk. Kayla is now happy, pain free, and living life.  It was worth it to go through the tears, late nights and utter hell to make it to this point.  What is this worth to you?  What lengths would you be willing to go?  It is not workable to just turn a blind eye and assume everything will work out with out taking any actions to find answers. You have to be willing to continue searching no matter the obstacle or message indicating otherwise.  Because the medical system is run by humans it is prone to the same foibles and mistakes that comprise human beings as a whole.  Never take anything for granted, get your medical reports and read them, even if your medical personnel are reluctant to give them to you. This is empowering and very enlightening.  This type of vigilance and action could very well save a life. 

~