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Basically here is what happened this week:

We finally met with the Dr. at UW who is the head and neck specialist.

He told mom that he hadn’t received any of her records yet from MD Anderson (which may have been due to the hurricane)

He decided to go on the information he had. The gist of what he said is that he didn’t think mom had gotten aggressive enough treatment at MD Anderson, and that the cancer she has (Small Cell Carcinoma) is extremely aggressive, so it is important to treat it aggresively and immediately. He is the head of the Brazilian Cancer institute, and also a specialist in small cell cancer of the lung.

He wanted mom to get a brain MRI and another PET scan, and he wanted to start her on two chemo regimens on Monday. CPT-11 and Cisplatin. He wanted her to undergoe 4 four cycles of this chemo. (Four months once a week for three weeks each month)

So this was pretty tough news. Mom and dad along with a friend of ours that attended were all taking it pretty hard. Mom and I think most of us, thought that mom was through with the most difficult part.

I brought up a few points such as:

The Dr. stated that he had told the tumor board at UW back in June that this needed to be treated agressively and immediately, yet he couldn’t get mom an appointment in his office until July 25.

He specializes in small cell of the lung, which is similar, but not the same as small cell in other parts of the body, and that there is no definitive research on treating small cell in other parts because it is so rare.

He also seemed to be treating the disease, and not the person, by this I mean, I didn’t feel like he looked into mom’s history as a myeloma patient, or looked at her counts etc. When queried, he did admit he had never treated a person with Myeloma and small cell.

So basically, we decided that we needed to talk to mom’s Dr. at MD Anderson and find out why there seemed to be a discrepancy.

For now I will be short, as the new info we got last night is also long to explain, but the gist is that:

Moms Dr in Houston also recommends mom get more chemo, and ALWAYS intended for mom to get more chemo… for whatever reasons, we didn’t realize this was going to be a tough protocol. We thought maintenance chemo meant it would be easy to tolerate. We may have been so focused on the initial treatments. Christine says she did remember.

Moms Dr in Houston recommends a slightly different protocol though. She is suggesting the cisplatin combined with a different chemo than cpt-11 euroflaxin or something like that. For only 3 months. She said she wouldn’t start until mom’s mouth heals and her feeding tube is out because it is important to be able to eat while under chemo. Because mom has already undergone two types of chemo, (one for myeloma, and one for this) it is important to closely monitor her blood levels.

Needless to say, this was a tough night and tough news. As mom said, “My bubble has been burst.” She thought she was done and on the way back, and now she is being told she should have three more months of chemo. Dad also was kind of surprised by it, because now he is basically looking at three to four more months of no life outside of being a nurse 24/7.

The next question is where to get the chemo… Seattle, Arizona, LA, or Houston.

Lot’s of questions still… lot’s of thinking and praying to do..

I woke up today to mom calling for me because she was throwing up.

cancer is a challenge

Dad went to excercise this morning until I called him to see if he could come home to give mom her nausea meds.

cancer is a challenge

My friend Erica’s mom just found out her brain tumor has come back after just three months. The doctor told them the cancer is inoperable because it is growing fast, like fingers, into various parts of her brain. They were given the “quality of life” talk.

cancer is a challenge

It is so hard to see mom do so well for a few days, and then to see her so sick again so suddenly.

Thank you for all of your prayers. Today was a tough day again. Tough for dad because he was alone, tough for the rest of us because we couldn’t be there with them because of work.

As I watch this tragedy unfold on TV, I can’t help thinking, “I can’t believe my family was just living in Houston less than a month ago.” The freeways that everyone is trapped on are the same freeways I would take to get back and forth from the airport to the hospital. I called MD Anderson today, and they have just a skeleton crew working. My Mom was in such bad shape before they left Houston, I couldn’t imagine the thought of having to evacuate if they were still there. Houston is a huge medical metropolis. There must be a dozen or more MAJOR hospital institutions in Houston. I pray that those facilities are all okay.

Thank God my Mom left Houston in time.

Mom was admitted to Allenmore yesterday. Her red blood cell count is dangerously low, which explain the extreme fatigue, very low energy, diffiulty breathing. Red blood cells carry oxygen to the different parts of the body and when the red blood cells are low, all the symptoms my Mom is having occur.

She was given a transfusion last night. Mom Dad and Kweeya (aka Michael) have been very impressed with the care provided at Allenmore- much different than their experience at the TG ER.

I talked to my Mom at 9 am, and she still wasn’t feeling better so they are going to keep her in the hospital until they feel she is out of the woods.

(Update: Mom was released around 1pm and got to go home. She is under very strict quarantine because her blood counts both red and white are very very low. No visitors, unecessary exposure, or outside prepared foods, or raw foods.)

Thanks for your prayers, we’ll keep you posted.

Mom’s red blood count and hematocrit (sp?) are very low. She crashed today, we are about to leave for the ER where she can get a blood transfusion and hopefully be admitted until she stabilizes. Thanks for the prayers. Also could you add my friend erica and her family as her moms brain tumor has come back after surgery, 3 months of chemo and radiation. Also please pray for all our friends in Houston as Hurricane Rita bears down on them.

Mom is doing better it seems as each day progresses. It is frustrating sometimes when things seem to be getting muchbetter, and then mom ends up having a “bad day” again. On Sunday mom was pretty tired and nauseous again most of the day. Monday she was much better. We were blessed by a visit from our family that has been having weekly prayers every Monday. Yyesterday we had them over at mom and dads house. It was such a Blessing. Also, on Sunday, my cousins Paula and Jim had their baby Alexandra Jude baptised. I was asked to be one of the Godparents, and humly accepted. It was one of the nicest days of my life.

Mom also received a visit from her friends Meg and Jim. Meg is the friend that came to Houston to help take care of mom the weekend that Christine couldn’t come down. It was a good break for dad to hag out with Jim. Unfortunately Meg didn’t get to see how mom has been feeling better because they came by on Sunday when mom was feeling very sick.

Thanks again for all of the prayers everyone. God Bless all of you!

Hello everyone. it has been a bit harder to post updates now that we are back in Seattle. I have been workng every day, as well as coming home to stay at mom and dads house.

Mom is doing quite well. Dad is hanging in there also as her primary caregiver. I honestly do’t know how he does it. I would be crazy by now. As many of you know, dad doesn’t take breaks really. He has basically dedicated himself to taking care of mom 24 hours a day 7 days a week. It is really admirable to watch him so dedicated to mom, even though she can be ma likot.

Today was the long awaited visit to U of Washington to see moms surgeon again. Things seem to be healing well. Mom has a couple of infections, but nothing serious. He is referring her to a couple of UW physicians to help her out. One is in her mouth, and one in her ear. This kind of explained the partial hearing loss. (At least we hope)

Mom will be able to have limited guests soon… (people not exposed to children or other sick people). She is looking forward to being able to thank many of you in person. Her voice is also coming back slowly.

Our next goals are to get mom of off pain meds. Get mom off her feeding tube, and have a cancer free scan in November.

Thanks again for your prayers and support! Love, Michael

Cancer is so limited…

It cannot cripple LOVE
It cannot shatter HOPE
It cannot corrode FAITH
It cannot destroy PEACE
It cannot kill FRIENDSHIP
It cannot suppress MEMORIES
It cannot silence COURAGE
It cannot invade the SOUL
It cannot steal ETERNAL LIFE
It cannot conquer the SPIRIT

CANCER IS SO LIMITED!

Paul, the kids and I went up to spend my Mom’s birthday with her and to welcome them home from Houston over the long Labor Day weekend. We didn’t get to do much celebrating because my Mom wasn’t feeling too well most of the time. I was able to be her 24/7 nurse while we were there so that Dad could get a break. My Mom was so happy that I was sleeping in their bed at night. She said, “It’s been a long time since my little girl slept next to me at night.”

She would wake up every 20-30 minutes from coughing. The infection in her throat drips down into her lungs causing her to cough or gag frequently - especially at night when she is laying down. I am an extremely light sleeper - as most Mom’s are - and I would wake up every time she coughed, or even every time she adjusted her position in bed.

Sometimes when my Mom woke up in the middle of the night, she would think she was wide awake and when we got back into bed, she would try to have a deep conversation with me- you know, one of those special mother-daughter talks. She would say, “What do you remember about your childhood?” or “Do you think you’ll ever leave California?” or “How’s your job?” I think she wanted to take advantage of this special one-on-one time with me.

I would start answering her, and she would be fast asleep before I even finished the first sentence! I could have answered, “Actually, Paul and I were thinking about moving to New York next year” and she wouldn’t have flinched. By the 3rd time she started with the deep conversations, it was 3:15 am, I answered, “Mom, let’s talk about this when it isn’t 3 o’clock in the morning.” She laughed and fell back asleep in 2 seconds. The pain medications and anti-nausea medications cause her to get really sleepy, which is good because it forces her to rest a lot. But, she sure doesn’t make for a good conversationalist when she is feeling drowsy.

During our visit, I was taking care of my Mom most of the time. There was a little person with us who apparently has her ears open all the time. Nina, my 6 yr. old daughter, overheard Dad and I having a talk with Mom. We were telling her that she needs to rest and try not to overdo things too much. We all think there is a strong correlation between Mom getting up and moving around a lot and getting nauseated and vomitting. Often times when Mom gets sick it occurs after she has been up and around. She feels so good that she wants to get out of bed, but soon after, she ends up getting sick.

So, Dad and I were telling her that we wanted 2 weeks from her - where she would agree to the following goals: 1) RESTING and 2) EATING. Since my Mom is on a feeding tube, we need her to be still in order to get her feedings in. Resting and good nutrition are the KEY FACTORS in healing.

So, Nina heard us telling my Mom “the rules” for the next 2 weeks. Soon after, Nina was upstairs with my Mom while I went downstairs to get something to eat. I told Nina to watch over Mata and to yell loudly for me if I was needed.

Nina noticed that my Mom was getting up from the bed and removing her feeding tube. She said, “Mata, I don’t think you should be getting up. You might get sick.” My Mom replied, “It’s OK Nina, it will be our secret.” Nina went on to tell Mata, “No, I’m in charge and Mommy and Papa’s rules are my rules too!” My Mom, of course, got a kick out of this and laughed about it. It really cheered her up. My Mom really listens to Nina’s instructions too.