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Found 14 results

  1. As many of you know my wife has been sick for the last three months and Urgent Care told her it’s a viral infection and she just needs to wait it out. After two months she lost 40lbs and appeared to have Jaundice with her coworkers telling her she has a gray tint to her skin. Kate decided to try her primary care physician which told her the same thing, it’s a cold and you just need to wait it out. We had a parent from our sons FIRST Robotics team that mentioned she could have Lyme Disease which when looking it up, appeared to possibly be the answer. We were just in Tennessee and she did lead the way down a trail outside our cabin which had spider webs (could of a wolf spider fell down and bite her giving her this Lyme Disease or a tick?) Kate was having a difficult time standing, having to sit down because she was getting very nauseous and light headed. Horrible migraines which her Primary Care physician prescribed medicine for that which you supposedly have to take as soon as you feel you have a migraine coming on but it usually made her super sleepy. Loss of appetite where she didn’t want to eat anything but Tropical Smoothies for some nutrition. I went to a natural health store and got her some Ginger Shots and some essential oils to help her fight a possible Lyme disease naturally (if it’s even that). Forced her to take vitamins…. Based on one of my friends (rob) recommendation, I bought some Bovin Colustrum and encouraged her to take that since Indians used it to cure many illnesses and in hopes to beat this as well as several other “remedies” but nothing was helping. While working one day her supervisor recommended the doc she see's and it just so happens the doctor is in Davison (where we live), Bridgett Dyson, and Kate made an appointment with her this past Tuesday (2/4/2020). I told her, if she says "it’s a cold" we are going to the Emergency Room because I know in my gut its not a dang cold. The moment Kate walked into the office this doctor has immediate concerns as she confirmed that Kate did not look healthy and immediately ordered three pages worth of blood testing and told Kate if its urgent she will call her that night, otherwise will get with her on Thursday. We went to bed and around 10:15pm we got a call which appeared to be spam call (no-caller id) but what spam caller leaves a message? Kate listened to the message and it was her doctor saying she is calling right back and please answer. So Kate answered the second time and the doc said, very calmly, that Kate's blood came back with some concerns and that she (the doc) strongly recommends Kate go to the Emergency Room right away (which I overheard since we were both in bed) so before she even got off the phone I’m getting dressed. I rush her to the ER at McLaren in Flint and of course begin the waiting period. Once we get pulled in the back room they look at what her doctor sent over and they wanted to double check for themselves so they also took her blood. In a few minutes they came back and said, “How are you walking?” When her doctor pulled her blood her hemoglobin was at a 5 (normal for women its between 12-15) and her White Blood Cells were at 1 (normal is between 4-11). Now in the ER her hemoglobin is down to 4.3 and her white blood cell was down to less than 1. NOW they are giving her a ton of attention and she immediately gets two bags of O negative blood (since she is O+) at the fastest rate they can perform a blood transfusion which is at 150 in hopes to get her blood levels up. Kate said it felt so cold entering her body and it tasted aluminum in her mouth reminded her of a Pepsi which is disgusting to her. She asked for the coke version of O- but I guess they didn’t have any. Did another blood work (checking to see if its raising her counts) and it did slightly but required a total of 5 bags of O-. So over the course from Tuesday night to Saturday noonish my wife had to get bone marrow biopsy so they can determine what blood disease she has. Initial thought from the hematologist was a-plastic anemia but after the bone marrow biopsy it said it was for sure Leukemia but not sure which kind until results are back from Karmanos Cancer Research in Detroit which we received FINAL confirmation yesterday that it for sure is Acute lymphocytic leukemia (ALL) or otherwise known as acute lymphoblastic leukemia which in children under the age of 12 has a good chance for cure and in adults they says there still is a chance to be cured. I’m sure I’m missing pieces since my head is drowning in knowledge of what this disease is. I have to apologize that my time is reduced since I am doing everything I can to support my wife while she is going through this without breaking down myself. It’s insane to think of a time where we were both healthy and just enjoying the day probably stressing about stuff that doesn’t even matter today or involved in drama that goes away. Everything now seems so minor (except our Health Insurance).
  2. We are "suppose" to be on the last week of the Induction process. It's very very busy in the waiting room (more so than we have ever seen). Asking if she needs to continue the Bactrin prescription or not since she has a refill on the bottle so before we go get it refilled, making sure she needs to continue. Mentioning her ribs starting hurting Tuesday March 3rd, 2020.... 9:50am Kate got her blood work done (they are so busy so running behind schedule) 11:30am Kate got brought back for her Lumbar Puncture. 12:05pm Finished with Lumbar Puncture (kate is happy.. way better than before), now we wait an hour with her flat on her back with an IV drip of saline to hydrate her. She must drink lots of fluids (recommended caffeine to help her keep headache away)
  3. We are at the Karmanos Cancer Institute in Detroit for our 3rd Chemotherapy Treatment as part 3 of 4 of the Induction process. This week they are introducing Rituxin to the normal two she has been receiving. It appears Rutuxin has less side effects as the new drug they used last week so that is good. Especially since I'm on-call starting Tuesday to Tuesday so I will be concentrating more on my job. If we take last week as any indication on how busy On-Call has been, I'll be busy every night but very lucky to have such a great company to work for as they have been understanding and working with me through this tough time in my life. 7:15am In waiting in the waiting room to be called back 7:45am Took us to Room #6 where they took her weight, blood pressure and took 5 test tubes of blood (green, pink, yellow, purple) 9:00am Received the results from bloodwork they took at 7:45am. Most numbers are good (except White Blood Cell count) Potassium: 3.9 White Blood Cell (WBC): 0.4 Hemoglobin: 8.8 Platelets: 79 9:15am Got our visit from Dr. Yang. He said all was good. He wants to keep an eye on liver numbers which are high but expected after the pegaspargase Kate received last week. He also mentioned he would send a prescription for Ambien to help Kate sleep a full night since she isn't currently which they believe is the result of the steroids which she just needs to take for these last two weeks of the Induction phase. He mentioned that the Tuesday with no chemo she has to get another bone marrow biopsy to see how the treatment is progressing. He also said that the corona virus that is spreading like widfire could really cause some significant issues so be very cautious about being around anyone sick, especially with the white blood cell count so low. Kate should still be excercising/moving around but not around people mainly as much as she can, stay home and away from anyone sick. 9:35am Nurse begins the process of the pre-drugs Two Regular Tylenol via pills Benaryl via Syringe Hydrocortisone steroid via a Syringe 10:00 am Nurse is starting the Zofran IV drip (avg 30minutes) and yes, Kate is getting very sleepy. This time we got a room with a hospital bed versus a chair. I see ZZzzz's in kate's near future. next will be the 2 normal chemo drugs and the rituxan. First two take about 5min each and the Rituxan takes 4 hours minimum. 10:30am Kate received the daunorubicin via Syring (avg 5min infusion) 10:40am Kate began receiving the vincristine via IV drip (avg 5min infusion) 10:55am Kate began receiving the Rituxan via IV drip (avg 4hour infusion) - NEW 11:15am Nurse woke Kate up from a pretty deep sleep to check her vitals. You could see how unpleasant Kate was with that sleep interruption. 12:30pm Kate is awake, I got her some apples and caramel and she is watching her shows and just ordered some chicken and dumpling soup. Everything is moving right along. It doesn't even look like the Rituxan IV bag is even going down but I'm sure it is.
  4. So we got up at 5am to get our butts moving for our 7:15am scheduled appointment at Karmanos Cancer Institute in Detroit. Our actual appointment isn’t until 7:45am but they tell us to arrive 30minutes early which translates to someone in the military as 6:30am arrival time as Kate and I are hanging out in the parking garage. Our boys had to help us out this morning by getting themselves ready for school and Alex has to get himself on the bus. So this is our 2nd Chemo treatment as part of the 4 week Induction Process before they begin the aggressive chemo treatments. We aren’t sure what that will entail but we know it is the same process they perform on kids with a higher success rate than an adult treatment. My worry for this week is how Kate’s blood count will do being not monitored for a week. We know after last week that her count for hemoglobin and platelets and white blood cell count all decrease pretty quickly. I just don’t believe she will be able to go a full week without a blood transfusion. I suppose a question for Dr.Yang when we see him today.
  5. What is cancer? To answer this question, you can start with the basic make-up of the human body. For example, “The body is made up of cells. Normally cells are healthy, but sometimes there are unhealthy, abnormal cells that grow and aren’t supposed to be there. This is called cancer.” Once there is a basic understanding of cancer, you can go into detail on what part of the body is affected by the cancer (e.g., lung cancer). Can I catch cancer? Many children, even teenagers, think cancer is contagious. Because of this they may choose to distance themselves from the person with cancer. To help children understand, you can explain that cancer is not contagious like a cold or the flu. You cannot catch cancer. You cannot get it from hugging or kissing someone, or sharing their food or drink. What is chemotherapy/radiation/surgery? Cancer treatment can often seem like a mystery to children. You may go in for a treatment and come home feeling worse because of the side effects. This can be very confusing for kids. When you talk to your child about treatment, try to include some information on possible side effects the doctor has shared with you. This can help prepare a child for what he or she may see in the future. Here are some possible ways to explain common cancer treatments and side effects: “Chemotherapy is a medicine that attacks cancer cells. Chemotherapy is very strong and can sometimes cause the person taking it to feel sick and tired.” “Radiation therapy attacks cancer cells. It is similar to an x-ray and targets the area with cancer. I cannot feel radiation when it is happening, but it can cause me to feel tired afterwards.” “Surgery is when a doctor will surgically remove an area where cancer is located.” “Sometimes someone with cancer will have one type of treatment, and other times they will have a combination of treatments including chemotherapy, radiation, and surgery.” Why are you losing your hair? Hair loss is one of the most obvious side effects of cancer treatment. Many children think cancer causes hair loss and they don’t understand that it is actually the medicine that causes hair to fall out. One way to explain this is by talking about how the medicine is so strong that it attacks the normal cells at the same time as it attacks the unhealthy, abnormal cancer cells. Hair is made of normal, healthy cells, so sometimes people living with cancer lose their hair. Explain that eventually the hair will grow back (this is often something that children wonder about). Do people with cancer die? Are you going to die? What is going to happen? These can be the hardest questions to hear your child ask, and surely the hardest questions to answer. Your answers will depend on your personal cancer experience; however, many find it can be helpful to be hopeful and honest with your responses. Chances are your child will hear that other people have died from cancer, and perhaps they even know someone who has died from cancer. One possible response may be, “People can die from cancer, but many people live. My doctors are doing everything they can to get rid of my cancer. That’s why I am at so many doctors’ appointments and have so many visits to the hospital. Right now they think that the medicine is working, but if that changes, I will let you know.” Children want to know that if there is a change, you won’t keep it from them. Try to update them when it seems appropriate. Children also worry about what will happen to them if their parent dies. They wonder about who will take care of them and their basic needs. It can be very helpful and reassuring to let your child know who would take care of them, and remind them of the people in their life who care for them. fsac_what_do_i_tell_the_kids_smaller.pdf
  6. It’s 3am on 2/17/2020 and we are in a room on the 9th floor in Karmanos Cancer Facility in Detroit. This is the beginning of the Induction process which in short means the beginning of chemo treatments while keeping a close eye on Kate during the process. The doctor believes this will take less than a week this visit but the Induction process is typically a week. There are four phases to chemotherapy treatment: The first phase is called Remission Induction. Treatment during this phase is designed to kill the leukemic cells in the blood and the bone marrow, putting the disease into remission. The second phase is Central Nervous System Directed Therapy. This phase kills cancer cells in the central nervous system and prevents the disease from spreading to the spinal fluid. The Consolidation/Intensification phase is given after the disease is considered to be in remission. It's designed to kill remaining leukemic cells that may be inactive but could begin growing again and cause the leukemia to recur. This phase usually lasts several months. The maintenance phase is the final phase of treatment that lasts for two to three years. It's used to kill any remaining cells that could cause a recurrence. Medications are often given at lower doses. stay tuned for more updates
  7. Tonight Kate developed a fever (running 100.5) and whats scary is they say if you have Leukemia and get a fever you must go to the nearest Emergency Room since its more than likely an infection which can prove to be fatal. So right now we are calling 1-800-Karmanos to find out what they want us to do. Patients with acute lymphoblastic leukemia (ALL) present with either symptoms relating to direct infiltration of the marrow or other organs by leukemic cells, or symptoms relating to the decreased production of normal marrow elements. Fever is one of the most common symptoms of ALL, and patients with ALL often have fever without any other evidence of infection. However, in these patients, one must assume that all fevers are from infections until proved otherwise, because a failure to treat infections promptly and aggressively can be fatal. Infections are still the most common cause of death in patients undergoing treatment for ALL. The doc called Kate and said she needs to immediately get down the the hospital because it means it could be infection. we are packing up and heading down
  8. Last night Kate called the Support line for the Homecare nurse complaining on how much the bandage hurts after they redid it during our Hospital visit yesterday (Friday). Kate was complaining of a burning sensation and very uncomfortable. A homecare nurse showed up and was very polite and helped explain how to clean the pic line with basically salt water and yea, I got my intro on how to do this myself for Kate. She re-bandaged it up and Kate kept thanking the nurse because it was like night and day difference. She is no longer after the polite home care nurse re-bandaged Kates pic-line. Now if I could only get Kate to relax... I'm trying to restrict her some so she doesn't get her blood flowing. In my mind, more blood flow means the quicker the cancer can spread since it is a cancer of the blood. Of course thats my logic and I really don't want to loose my wife. What is a PICC Line? Below is a pretty good illustration but its basically a quick way for doctors to pull blood from within having to re-stab kate with a needle every-time. It's also a place for the doctor to administer the chemo treatments. She has to keep moving that right arm so it doesn't get buildup on the line as well as get clogs.. we don't want to get clogs in the line which is why I get the pleasure of flushing the line out daily.
  9. A bone marrow biopsy involves removing a small sample of the bone marrow inside your bones for testing. Bone marrow is a soft tissue in the center of most large bones. It makes most of the body's blood cells. The biopsy is done using a small needle inserted into the bone.
  10. Came home from a tough appointment today to find a care package waiting for Kate. one of the sweetest women at Mclaren health plan is always looking out for how she can encourage and help others. One of those ways is through her “Abby Angel’s”. She lost someone and decided years ago to light the path for others struggling by giving these angels when they are needed. It is an honor to be gifted one by Lana because it means that she is now a warrior for your battle. We came home today to a package of an Abby Angel from Lana’s personal collection to watch over and protect while we fight this battle. Words cannot express the thoughtfulness and encouragement that this angel and sweet Lana has instantly brought to our home. Thank you all for being part of our warrior tribe. With this much determination, there is no way we won’t succeed in our battle.
  11. The pain in Kate's feet is driving her crazy. It's painful no matter if she's walking or not but more painful if she's walking. We have tried foot baths which help relieve the pain but not the tingling sensation that eventually turns into pain. The doctors prescribe a medicine to help with the pain but it puts her to sleep. Bloodwork Results Potassium: Bilirubin(Liver Function): White Blood Cells (WBC 4.0-10.0): 2.6 Hemoglobin (HGB 11.5-16.0): 8.1 Platelets (PLT 150-500): 16 **all numbers dropped this week from last week Transfusions Blood: NO Platelets: NO (not down enough for transfusion (11 or less) and yes they dropped more from last week) Procedures Lumbar Puncture: NO BoneMarrow Biopsy: NO (scheduled for either Thursday or Friday to include MRD test) Chemo Methotrexate via IV drip (avg __min infusion): NO Vincristine via IV drip (avg 5min infusion): NO Pegasparagus via drip (avg infusion): NO Cyclosphomine: NO Cytarabine: NO Rituxan via IV drip (avg 4hour infusion): YES Daunorubicin via Syring (avg 5min infusion): NO <--causes hair loss
  12. So our first visit to Karmanos in Detroit. We were given Valet so getting in wasn’t too bad and traffic down from Davison was quick. Front staff that checked us in was very professional and then a guide brought us to the room on the second floor where we had a pretty brief wait before being called back. Dr. Yang is another great doctor that is very knowledgeable. Leukemia is his specialty and he is very informed on Kate’s condition. He mentioned it’s typically found in kids (under the age of 12) with around an 80% success rate of fully cured within three years. If she was 70 years old she would have a 10% chance of survival with treatment. Dr. Yang said she might be somewhere in the middle being 34 years old but he wants to treat Kate as a child which means it’s more aggressive chemo treatment. So estimated treatment is 1-3 months of very aggressive chemo treatment. First 4 weeks is induction and then 6-7 months aggressive chemo then possible maintenance. she will have 20 spinal taps over the course of three years to make sure the leukemia hasn’t entered her spinal cord since it wants to get to her brain which would be not a good thing. unfortunately she will have to have multiple bone marrow biopsies to monitor the progress chemo is having on the cancer located in the bone marrow. during this process she will have routine blood transfusions to get her blood numbers up since chemo will bring them down. Eventually after chemo kills the cancer cells, her bone marrow will hopefully start producing good cells. how the doctor explained it is the good cells are getting pushed out or over run by all the leukemia cells. So chemo will hopefully kill this leukemia cells. Monday Kate’s hemoglobin was 8.8 and then Thursday (yesterday) it was 8.7 and when measured today it was down to 8.3 Apparently when your hemoglobin drops to low you run the risk of bleeding and not able to stop the bleeding. They told us if Kate begins to bleed and we can’t get it to stop within an hour that I should drive her to the ER at Harper Hutzel which is attached to Karmanos and they will admit her then. Scary stuff.
  13. What is acute lymphoblastic leukemia? Acute lymphoblastic leukemia (ALL) is a cancer that affects the white blood cells. These cells fight infection and help protect the body against disease. Patients with ALL have too many immature white blood cells in their bone marrow. These cells crowd out normal white blood cells. Without enough normal white blood cells, the body has a harder time fighting infections. ALL affects a type of white blood cell called lymphocytes, causing them to build up in the liver, spleen and lymph nodes. How common is acute lymphoblastic leukemia? ALL is the most common type of childhood cancer. It most often occurs in children ages 3 to 5 and affects slightly more boys than girls. ALL is most common in Hispanic children, followed by those of white and African-American descent. About 3,000 people younger than age 20 are found to have ALL each year in the United States. Siblings of children with leukemia have a slightly higher risk of developing ALL, but the rate is still quite low: no more than 1 in 500. What are the symptoms of acute lymphoblastic leukemia? Symptoms of ALL include: Frequent infections Fever Easy bruising Bleeding that is hard to stop Flat, dark-red skin spots (petechiae) due to bleeding under the skin Pain in the bones or joints Lumps in the neck, underarm, stomach or groin Pain or fullness below the ribs Weakness, fatigue Paleness Loss of appetite Shortness of breath How is acute lymphoblastic leukemia treated? Expect your child’s ALL treatment to include three phases: Induction — to kill the leukemia cells in the blood and bone marrow and put the disease into remission (a return to normal blood cell counts) Consolidation/intensification — to rid the body of any remaining cells that could begin to grow and cause the leukemia to return (relapse) Maintenance — to destroy any cancer cells that might have survived the first two phases Four types of treatment may be used during any of these treatment phases: Chemotherapy (“chemo”) — uses powerful medicines to kill cancer cells or stop them from growing (dividing) and making more cancer cells. Chemo may be injected into the bloodstream, so that it can travel throughout the body. Some chemo may be given by mouth. Combination therapy uses more than one type of chemo at a time. Stem cell transplant — includes replacing blood-forming cells in the bone marrow that have been killed by chemo and/or radiation therapy: A stem cell transplant gives the patient new blood cells from a donor’s blood or bone marrow. These cells grow into healthy blood cells to replace the ones the patient lost. Some types of stem cell transplants may be called “bone marrow transplants” because the cells come from the donor’s bone marrow. Radiation therapy — uses high-energy X-rays or other types of radiation to kill cancer cells or stop them from growing. Targeted therapy — uses medicines or other treatments that target and attack specific cancer cells without harming normal cells. What are the survival rates for ALL? The National Cancer Institute (NCI) estimates 5,960 people will receive a diagnosis of ALL in the United States in 2018. About 1,470 people will die from the disease in 2018. Several factors can determine survival rates, such as age at diagnosis and subtype of ALL. The five-year survival rate in the United States is 68.1 percent, reports the NCI. However, these numbers are steadily improving. From 1975 to 1976, the five-year survival rate for all ages was under 40 percent. Although most people who receive a diagnosis of ALL are children, the highest percentage of Americans with ALL who pass away are between the ages of 65 and 74. In general, about 40 percent of adults with ALL are considered cured at some point during their treatment, estimates American Cancer Society. However, these cure rates depend on a variety of factors, such as the subtype of ALL and age at diagnosis. A person is “cured” of ALL if they’re in complete remission for five years or more. But because there’s a chance of the cancer coming back, doctors can’t say with 100 percent certainty that a person is cured. The most they can say is whether or not there are signs of cancer at the time.
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