Helping a child fighting ALL Leukemia- the power of prayer

Learning to cope with a child (grandchild) who is fighting Acute lymphoblastic leukemia (ALL), has not been an easy task. Andrew Joseph Bay who is now three years old was diagnosed with leukemia in July 2013. His little body has too many lymphoblasts in the white blood cells. Malignant, underdeveloped white blood cells constantly reproduce causing overproduction of these bad cells in the bone marrow. A.L.L. causes damage crowding out normal cells in the bone marrow. It often spreads to other organs and can cause death. Acute lymphoblastic leukemia is most common in childhood with a peak incidence at 2–5 years of age, and another peak in old age. In A.J.’s cause he began having severe stomach pain and unexplained anemia at the age of almost three.

It took the doctors several week and many trips to the urgent care to get a diagnosis. AJ kept complaining his stomach hurt. First, the doctor told mom it was just a virus and to take him home and it would pass, Next, visit they decided to draw some blood. This time they decided that AJ was anemic. They told his parents again to take him home and begin to give him iron.

After another, week passed AJ began to become very pale and did not want to eat nor play. His parents decided to take him back to urgent care. This time mom told them they needed to do more tests as this behavior was not normal and there was something really wrong. The doctors appeased mom and drew more labs. They sent the family home and told them to continue to give the little guy iron and watch him. AJ was not improving.

A few days later on a Tuesday in mid-July his mother received a call at work. They told her she needed to go home and get AJ and bring him to the Children’s Hospital at Loma Linda University Medical Center immediately because they needed to admit him as they believed he had Leukemia. By 6 pm that evening it was confirmed little AJ had ALL leukemia.

AJ spent the next two weeks in the hospital having tests run and beginning to receive chemo therapy. They had to draw blood every few hours for testing. The took his vitals every two hours so sleeping well was out of the question. AN adult had to be present with his at all times so mom, dad, and grandparents had to all take time off work to help.

Watching this little boy go from a rambunctious two-year old to being lethargic and lifeless was heart wrenching. He did not want to do much of anything except be held and watch movies. The little moments of a smile or “I want to play with my truck,” were cherished and still are cherished. During the first two weeks AJ had to often had be restrained by the medical staff as well as family so that his blood could be drawn, IV’s could be placed and changed, or to give him his oral medications.Trying explain to a 2-year-old child that he has to take all this medicine is almost impossible.

He was placed in isolation. He could not have any child visitors nor could he leave his room. We were told his ANC was zero. Another new term. So what did this mean? To us it meant we had to wear masks, gowns, and had to make sure his environment was as clean as possible, but it also meant is that we all had educate ourselves and understand what was really happening.

The term ANC is short for Absolute neutrophil count. This is a measurement of the number of neutrophil granulocytes. Neutrophils are a type of white blood cell that fights against infection. This became a new way the medical staff and family judged how AJ’s immune levels were doing. Chemo therapy causes the ANC to drop over-night sometimes. A normal ANC is above 1,500 cells per microliter. An ANC less than 500 cells per microliter is considered as a high risk of infection. Neutropenia, which is the condition of a low ANC, is the most common measurement used in the setting of chemotherapy for cancer. So, now the family and doctors talk in terms of AJ’s ANC as to whether or not AJ can join if family functions.

Everything has happened so fast and continues to happen fast. Our family continues to band together and help. We have put AJ on several prayer chains. We also pray for him ourselves. It is so easy to question God as to why any of this is happening or why such a young life is having to deal with so much pain. None of us can say those thoughts have not cross are minds, but we continue to be trusting and faithful. It has been almost 4 months and AJ is still with us and fighting.

Cymbalta witdraw is miserable-

After realizing there was no easy answer I have stopped taking Cymbalta all together.  Since the capsules cannot be pulled apart and  put back together to reduce the dose the answer is to just stop.

I woke up twice screaming from nightmares. Not something that I ever had to deal with until now.  I am very over-sensitive to sound…Become easily annoyed with things like dogs barking. Hopefully this will get better as the medication gets out of my system. I still have the nagging headache, stomach pain which feels like I have been kicked, the brain zaps that are slowly getting better, the over-sensitive skin with period of feeling like I am on fire, and the increased over-all body pain. HAving to deal with these symptoms makes dealing with daily life more difficult.

During this process I am continuing to take the vitamins and mineral supplements.  It may be a lot of pills but I have noticed that about 15 to mins. After I take them the over-all pain and fatigue become slightly better.  I am currently taking:

  • CFS/Fibro formula Multi vitamin- These contain a higher dose of A , B, E, Folic Acid, Magnesium, and Calcium)
  • Natural Triglyceride (EPA and DHA)
  • Malic Acid- Shown to reduce the musculoskeletal symptoms
  • Amino Acid (Arginine, Ornithine, Glutamic Acid, Aspartic Acid, Lysine, Glycine,Leucine, Valine, Threonine, Tyrosine, Histidine, Phenylakanine, and Omega 3)
  • Digestive Enzymes ( Lipase, Protease, and Amylase)
  • P5P

After some research and learning about what other patients have done to reduce the withdraw symptoms of Cymbalta I decided to try taking Benadryl.  I will say it has helped reduce the over-sensitivity of my skin as well as decreased the itching which felt like I had a million spiders crawling on me.

I am forcing myself to excersise to help deminish the symptoms as well. Even if I am tired I am going for at least a mile walk.

I will continue to share the symptoms and the process.  It is my hope that through my sharing of this experience others will strongly consider other avenues before taking medications like Cymbalta. Also, by sharing what works and what doesn’t may in the long run help others find the right regime.

Understanding and Preventing Measles

Cases of measles still continue to be identified in the United States. Measles is a highly contagious vaccine preventable disease.

Measles usually begins with a mild fever accompanied by a cough, runny nose, and conjunctivitis. Approximately three days after these symptoms appear Koplik’s spots may appear. These spots are clusters of blue/ white lesions located on the buccal mucosa (mucus membrane of the cheek). Following this the person may spike a fever as high as 104-105 degrees. Also at this time, a red blotchy rash appears, beginning on the face along the hairline and behind the ears. The rash may be slightly itchy and will move rapidly down to the chest, back, and finally to the legs and feet. The rash fades in the same sequence it appeared in about one week. The maculopapular rash has large plat blotches that often flow into one another.

If measles is suspected please call your family physician immediately as it is highly contagious and certain measures need to be followed to prevent the spread of the virus.

The incubation period for measles is about 7-21 days. The primary symptoms begin 8-12 days after exposure (day 0) and rash onset is typically 14 days (range 7-21 days) after exposure.
Exposure to Measles
Anyone who has shared the same airspace with a person infected with measles (during the 4 days prior through the 4 days after their rash). Example, being in the same classroom, home, airplane, or clinic waiting room where a person with the measles has been present up to 2 hours prior to you being in the area.
There has been no minimum time period established for exposure, but it is assumed that a longer exposure does increase the risk of infection.
 Prevention and Immunity
The MMR (measles, mumps, and rubella) vaccination is administered to children. The first dose is usually given at the age of 1 year, and the second does between the ages of 4 to 6 years old (the second dose is required prior to starting school). The vaccine is administered via injection. Although measles was thought to be eliminated from the U.S. , there has been a rise in outbreaks across of U.S. created by the higher number of parents who for various reasons have refused to vaccinate their children leaving them vulnerable to communicable diseases.
People who were born prior to 1957, have documentation of at least one dose of measles-containing vaccine, have a history of a physician diagnosed case of measles, have served in the arm forces, entered the United States in 1996 or later with an immigrant visa or have a green card, or are an infant who is under the age of three months whose biological mother has a documented 2 doses of MMR are considered immune. Please keep in mind that the infant will need to receive the normal vaccines at the appropriate times to build lasting immunity.
The only way to totally eradicate viral communicable disease such as measles is to protect ourselves via vaccination.