Wednesday, October 28, 2009

Home sweet home

Once Elizabeth was a confirmed case of H1N1 this is what they did to the door to her room. She was not real happy about it because we know what other parents and patients are feeling and thinking when they see that. They freak out and want to make sure their nurse is not the same nurse entering that room. All nurses have two or three patients a day to take care of and of course that means someone is going to have "that" nurse. We had a second door to the left of this door that went into an anti-chamber that all doctors and nurses had to enter. Anyone entering the room had to put on a gown, gloves, and a mask in the anti-chamber and pitch it in our trash before going back through the anti-chamber. We were both quarantined to the room. If I left I had to wear a mask and could not loiter in the halls.

For the next two weeks, anyone having any type of health issue, asthma, heart condition, or any type of immune suppression can not come to visit Liz. THIS IS FOR YOUR PROTECTION! The last thing Liz wants is to make anyone sick. If you have had the flu shot and are not sick in any way, shape, or form, you can call ME at 349-5966 to see if it is OK that you come. I would prefer that she not have visitors until she is cleared of this but sometimes that is not helpful for her mental state either.

We have been discharged from the hospital and are now at home. Liz is soaking in the jacuzzi and just relaxing before going to bed.

We had rounds with the team of doctors, pharmacists, and various other medical personal this morning around 10:00. The game plan was to have a CBC, complete blood count, taken at around 3:00 pm. If her ANC remained at 250 or above she would be able to come home. They changed their minds and said "We have three consecutive ANC's above 200, we are going with that and she can go home after we make sure she does not need a platelet transfusion." She did not so therefore we were turned loose, literally, and sent on our merry way by 5:45.

We have a CBC at Liberty tomorrow at 8:00 am, an appointment with Dr. Brenneman, at the Barrett Center for her radiation at 9:30 am, and then onto clinic at Children's after that. The said the appointment with Dr. Brenneman could take two to three hours.. They will be making a mesh mask of Elizabeth face to place over her face and snap her to the table during radiation. She must remain perfectly still at all times. We do not want the radiation going anywhere but where it is intended to go. Liz has great stress over this. They will also be doing CAT scans and MRI's for the correct placement of the radiation. It is extremely confusing and once I understand it better I will share it with you.

Thank you for your vigilant prayers for Elizabeth and our family during this trying time. Please continue to pray, we are not out of the woods and she can still have major complications. By now I am sure you all realize what they are ... renal failure, heart failure, high blood pressure, lung damage, etc etc etc. Please just pray for complete and total healing on Elizabeth's behalf with out complications.

God's love in unfailing. Lean on him in all situations in life. It is a privilege to share our joys with him.


Tuesday, October 27, 2009

It is confirmed.

It has been confirmed that Elizabeth does have the H1N1 virus. Please continue to pray for wellness and peace of mind during this time. We are still waiting for the blood cultures to come back hopefully with no trace of bacteria.

Liz is scared but the the docs. have made her feel a little less frightened and she is resting comfortably.

Pray for:
NO complications from the H1N1
Liz to feel peace
For the cultures to be negative of bacteria
For family that came to celebrate her life and one year anniversary, that they remain flu free

Thank you for your faithfulness ~ Blessings,


Liz playing Monopoly with her cousins, Melissa and Tyler.
Quick update on Liz ~

First off, we had a wonderful day celebrating her life and our lives together on Sunday. We had a great dinner and played one of her favorite games, Monopoly!

Secondly, Liz came down with a fever of 101.8 last night and has bought herself a stay at Children's Hospital on A5 South. When a cancer patient is neutropenic, ANC of >500, and running a fever, they are hospitalized. In the ED they stabilized her by administering two different antibiotics, fluids, and anti-nausea meds; they also did a CBC, flu swabs, and blood cultures. These tests will take 48 hours before the results are back.

Just came in from rounds. She must be fever free for 48 hours, cultures must come back negative and that also takes 48. With that being said, we will be in here until at least Thursday.

We are praying that the fever is simply due to the chemo she received on Fri. Her body is worn down and tired and seems to not handle all the intrusions as well as in the beginning.

Continue to pray for the following:
All patients and families on A5 South
Liz's fever to break
That her cultures come back negative
That Liz is not so fearful of the unknown
For my family to remain healthy

Thank you in advance for your prayers.


Saturday, October 24, 2009

Giving thanks one year later...

Above is a picture of Liz before diagnosis and her now. She is beautiful!

Tomorrow is Elizabeth's one year anniversary. A lot of people would probably not look on this day with thanks but I do. This is the day we were given to save our daughter's life. This is the day our world, for a brief moment, fell apart. This is the day our already close family became even closer. The bond between our children is unbreakable and beautiful and I know it will always remain this way.
Life throws curve balls all the time and if we did not have our life preserver, God, we would have sank like Peter did when walking across the water. As long as we keep the preserver pulled close to our heart we will always prevail, no matter the outcome.
I am on my way to the grocery store to buy and prepare our Thanksgiving dinner for tomorrow. A new tradition in our family is a celebration of thanks on Oct. 25. Giving thanks to God, our family, and a chance to grow old together.

May all of you be blessed with the same gratefulness, gratitude, and love that we feel.

God bless,

Thursday, October 22, 2009

Numbers update and not her phone numbers!

Well, we are on the slippery slope down hill. We had Elizabeth's blood work done this morning and the results are just as we predicted.
I will give you a little refresher course on Leukemia, ANC, HGB, WBC, Platelets.

Leukemia is a cancer in which abnormal white blood cells are produced in the bone marrow. These abnormal cells, called leukemia cells are cancerous. In other words, they grow out of control. Eventually they spill out of the bone marrow into the peripheral blood. The leukemia cells are not able to function as immune cells like other white blood cells, and their population keeps growing. Eventually they crowd out normal blood cells, including normal white blood cells, red blood cells, and platelets. There are so many leukemia cells that the normal blood cells cannot do their jobs of preventing infections, carrying oxygen, and causing the blood to clot.

ANC is the real or actual number of white blood cells that Liz has to fight an infection. White blood cells are the part of Lizzy's blood that work against possible bacteria, fungus, or viruses that may make her sick. A normal ANC is greater than 2,500. A safe ANC is greater than 1,000. After chemotherapy, Lizzy's ANC may drop low as 0. When the ANC drops below 500 , it is important that she remain away from crowds and people who have colds, flu, or runny noses. If Elizabeth is in the hospital with ANC below 500, she will be placed in protective isolation. This is to protect her from being exposed to possible infections. Lizzy's ANC is 90, not too impressive.

White blood cells protect the body from invasion by pathogens, and when levels of specific types of these cells are low, Liz has a lowered resistance to bacterial infection. White blood cells ( WBCs), or leukocytes (also spelled "leucocytes"), are cells of the immune system defending the body against both infectious disease and foreign materials. Five different and diverse types of leukocytes exist, but they are all produced and derived from a multipotent cell in the bone marrow known as a hematopoietic stem cell. Leukocytes are found throughout the body, including the blood and lymphatic system. A normal WBC is 4.5 to 13.5. Elizabeth is at .08. When she was diagnose on Oct. 25, 2008 her WBC was .05.

Hemoglobin is a protein carried by the red blood cells in the body. Hemoglobin will pick up oxygen when it passes through the lungs so it can deliver the oxygen to all of the tissues in order to maintain the health and viability of those cells. Hemoglobin is created by two similar proteins which will stick together. Both proteins must be present in order for the hemoglobin to pick up and release oxygen as it should. One of these proteins is called alpha, and the other is called beta. Beta does not appear until after birth. During the pregnancy, a protein called gamma functions in its place. A normal HGB is 12.0 - 16.0, Liz has fallen to 10., when diagnosed she was at 5. They usually transfuse her between 8. and 9. When her HGB is low it causes a lot of body aches, labored breathing and fatigue. She said it feels like the flu.

Platelets are fragments of cells in blood that are another important part of the clotting process. They work with the clotting factors in plasma to help prevent unwanted bleeding. Platelets come from special cells called megakaryocytes. Like other early (immature) forms of blood cells, megakaryocytes are mainly found in the bone marrow. A normal platelet count is 135k -466k, Liz is at 88k. When she was diagnosed she was at 17k

So as you can see the body is complicated and Liz is complicating it even more; I am sure she would stop if she could :-)
Liz will probably remain neutropenic, ANC below 500, for the rest of this DI 2 phase. We are praying that she will be done with this and into maintenance by Christmas.

This is an extremely difficult phase and Liz and the Lothrop's need all of the prayers you have to give. Please pray for her health, that she does not come into contact with anyone who is ill. Liz, at the moment, she can not even fight off her own bodies bacteria. Pray that Jim and Randy remain healthy. They both are going to school every day and coming home to her. It is a true answer to prayer that they have remained flu free given their circumstances.

Thank you to everyone who has sent me verses and inspirational sayings and quotes. I will arm myself with them when Liz goes back on the steroids tomorrow.


Tuesday, October 20, 2009

Favorite verses

Liz and her brother, Jim, at the homecoming!

I have a lot of faith and hope but let me tell you, last week was one of the most helpless feelings I have had in a long time. If you have had moments of helplessness in your life and there is a favorite bible verse or inspirational verse you can share with me I would love to have it. I want to arm myself with verses that can help me and possible help Elizabeth through next week. One that is bound to be another "helpless feeling" times.

Thank you for praying, being faithful, and riding this roller coaster with us.


Sunday, October 18, 2009

update on day 9 of DI2

Great news for a friend from Children's, Natalie Bradley. Her bone marrow transplant (BMT) was a success! Natalie was diagnosed with AML, a different form of Leukemia, before Liz was diagnose. She is now in remission! Her brother, TJ's, bone marrow was as perfect of a match as possible and she has life to look forward to again. I believe Nat had about a 1% chance of survival. If you don't believe in miracles you may want to visit Children's on the 5th floor. Yes, there is great sadness but there is also great joy, joy like a lot of us have not experienced and by God's grace and the exceptional staff, the Bradley's are experiencing this joy. They are a strong family of faith and excepted what the odds were but never gave up their faith in our Father. You can read and follow Nat's progress on her carepage.

Liz is tired and sick of being sick. her mental state of mind is being affected by the steroid, dexamethasone. It is causing her sleepless nights and days, anger, depression, and sadness. She is off of the steroid right now but will be going back on them this Friday for another seven days. The doctors are going to put her on a drug called Seroquel. Seroquel will help with her sleeping issues and mental state while on this steroid. Once she is done with the steroid, she will also go off of the Seroquel. She is also on Tamaflu for the next 10 days. For her, this drug is causing a lot of pain in the stomach and severe light headedness. I am sure her side effects are aserbated by the fact she is on so many other heavy drugs. Liz is not sick but was in contact with her cousin who at the time was not showing any signs of being sick but was in fact contagious and came down with a fever about 8 hours after spending the day together. Please pray for Melissa and her baby as she is eight months pregnant.

Liz has a lot going on before she hits maintenance but we are seeing the light at the end of the tunnel. God is good and he is showing us wonderful things in life that we may have missed if we would not have hit this LITTLE glitch in our lives. Remain faithful to HIM and you can get through anything and come out being a better and stronger person for it.

We will meet with Dr. Brenneman on October 29 at the Barrett Center in preparation for radiation that will begin sometime in November. They will be making a mask of her face that will be used during the radiation procedure. We will also be getting a schedule of her treatment and taking a tour of the center and the area of where she will be receiving her radiation.

Continue to pray for all the families on A5 South and Nat's miracle of remission.
Side effects from all the drugs
Lizzy's vital organs to be protected during this phase
Lizzy's mental state of mind
Her team of doctors and nurses that take care of her all week long

Blessings and good health.


Wednesday, October 14, 2009

Need sleep

Please pray for sleep for Elizabeth. The steroids are keeping her awake all night long. During the day she sleeps most of the time but it is not a restful sleep like we get.

There are four stages of sleep before you get to the Rem cycle, the deep sleep. Liz, on steroids only makes it part way into stage one: a light sleep where you drift in and out of sleep and can be awakened easily. In this stage, the eyes move slowly and muscle activity slows, also in this stage many people experience sudden muscle contractions preceded by a sensation of falling. Liz does not even make it to the falling stage of one. Probably a good thing becuase her steroids are making her a crabby pants. You can pray for that too, her crabbiness, while you are praying for her today.

Joel is still in the hospital and as far as I know they have not been able to find the source of the problem. Please continue to pray for the Brown family and Joel.

Blessings and a good nights rest to all of you tonight!


Monday, October 12, 2009

First 29 day in Delayed Intensification 2

Andy, Liz and brother Jim

Liz and Conner

Liz and Joel

Liz and Joel

Our family had an awesome weekend. Liz and her friend, Joel Brown, were elected as the Freshman Attendants. They absolutely had a ball. Something that they have had very little of in the past year; normalcy. They were just two kids that belonged.

We are now into DI2. This phase will last 60 days if she does not have any delays. The first 29 days goes like this. We started Friday, Oct 9 at 6:30 a.m. She had an LP (lumbar puncture) with Methotrexate. When Liz came around and was brought back to her room the docs wrote her orders for Vincristine and Doxorubicin, her chemo's. Are you ready? Here comes your pharmacy class.

Vincristine is one of a large group of drugs known as "antineoplastics"; these drugs are also known as cancer drugs, chemotherapy, or "chemo". They are used in the treatment of various cancers to slow or stop the growth of cancer cells. A combination of different types of cancer drugs will often be used to achieve a greater effect and minimize side effects. Likely side effects are: Nausea, vomiting, loss of weight, diarrhea, rash or bloating, hair loss, reversible nerve damage, jaw pain, joint pain, body pain, vision problems, muscle weakness, low cell counts (white, red, and platelets). Rare but serious - we won't go there - just pray she does not have "rare but serious side effects." Vincristine will be given day 1,8, and 15.

Doxorubicin, a chemotharophy, must be given slowly and directly into a vein (IV). Side effects of Doxorubicin may cause damage to the heart muscle (including heart failure), bone marrow suppression, trouble breathing, swelling of the hands or feet, easy bruising or bleeding, hair loss, low cell counts (white, red, and platelets), mouth sores. One rare but serious side effect that scares me and I ask for you to pray against is a new cancer or leukemia. Doxorubicin will be given day 1, 8, and 15.

Here is one she really hates, Dexamethasone, a steroid. She said this one changes her appearance more than any other drug she takes. Side effects are: difficulty sleeping, decreased ability to fight infection, mood swings, weight gain, or the side effect called "moon face." This is where their face become very round as well as the abdomen, bleeding of the stomach, headaches etc, etc, etc. This one has so many side effects it is hard to list. Just pray, that is all I can say and ask for. Liz will take this drug day 1-7 and 15-21.

PEG-asparaginase or PEG shots. This chemo will be given on day 5. This consists of three shots given in the thigh muscle at the same time. I hate this one. Side effects are increase ammonia found in the blood, extreme tiredness, weakness, decreased blood clotting factors, severe kidney damage, fever, rapid heart rate, and on and on and on; another one that has horrible side effects but Liz has no choice but to take these drugs to survive.

I am asking for prayers for her good friend Joel Brown, who is battling ALL as well. He has been admitted to Children's this evening with a high fever. He spent last night until 4:30 a.m. in the Emergency Department and went back down tonight. His fever was 102. Please pray that he is just worn down from all the fun and excitement of being on the homecoming court and that he just needs some fluids for hydration. I ask that our Father pour his protection on Joel, Liz and all the children fighting blood cancers. We are needing prayers for Liz's protection from the flu. Mason had about 400 high school students out today from the flu. If Leukemia patients get the flu and it turns into pneumonia it is deadly. Not one pediatric patient has survived pneumonia while going through treatment with Leukemia. This is a very scary time for our family and extended families on A5 South.

Gob bless you and continue to protect you.


Friday, October 9, 2009

We're on!

Woke up at 5:00 am for a 6:30 am procedure downtown at Children's. Liz's counts were good enough to start Delayed Intensification 2, ON TIME! This has never happened, she has never started a phase on time nor has she ever ended a phase on time. God does still work and show miracles.

I will up-date you with what this phase will entail later on this weekend. Please pray that she gets to go to the homecoming. She has been nominated for freshmen attendant and we will find out in a few hours if she will be on the court or not. Joel, her cancer buddy and classmate has also been nominated. More importantly, in the grand scheme of things, please pray for her vital organs to be protected in this phase. DI2 is intense on her heart, lungs, kidneys, and liver. Effects from these chemo's are irreversible.

Please keep all these children and their families in your prayers. Children's is such a blessing and I thank God everyday that we have such a wonderful hospital in our backyard, but it can also be a very sad place to be.

Love and prayers to all of you,

Sunday, October 4, 2009

While we are waiting for the DI2 phase to start, I thought I would let you know what Liz has been up to. She is feeling really good right now, her last dose of chemo was September 22.

October 2, Liz and I went for a small jog around the neighborhood. She loved every minute of it especially when I ate the sidewalk. She was laughing so hard at me when I fell that she swallowed an insect and I did not feel the least bit sorry for her. How come if I had fallen at age 26 I would be a klutz but at age 46 it is just because I am old???? Can anyone answer this for me?

Last night she went out for a walk/jog again and had Corrine, a friend, come over to hang out for a little while. After Corrine left she stayed up until 3:30 a.m. talking to Connor on skype. I don't know about her but I am exhausted. If you have skype, this is a great way for her to stay connected. Her counts will be down under 500 most of this new phase and with the flu and respiratory season clearly underway her visits with people will be limited.

It is great to see Liz feeling good again. She is still having issues with her joints and muscles but all-in-all she feels great. She is being a typical teenager and giving me fits about wanting to go and see and do. I have to be the bad one and always say no no no! She is not really digging her mother right now. I love it!!!! This house feels normal for a little while!

Please continue to pray that Elizabeth gets to go to homecoming,
her counts rise so we can begin the last phase before maintenance,
her internal organs will be protected from all the chemos in the next phase,
she remains healthy,
all the families and children on A5.

Blessings to all of you.