Wednesday, November 26, 2008

Quick Pre-Thanksgiving Update

I have time for a quick update in case you were wondering how I am doing. Last Thursday my platelets were 16k so I required a platelet transfusion as an outpatient. Since it was on the spur of the moment, they didn't have any HLA-matched platelets available and my body reacted to it and ate up the donation and then some! The next a.m. my platelets were only 3k which was rather dangerous so I was admitted into the hospital last Friday to receive platelets and red blood which was in the 8's. For a reference point, normal platelets are at least 150k and normal hemoglobin is at least 11.

Also, remember last week I was supposed to go into UCLA for preliminary baseline testing of all sorts. Well, they were so booked that we were unable to get in. The good news is that they faxed the orders to my local doctor and we had them all done on Friday while I was in the hospital which was super convenient.

I stayed in the hospital until Monday, until my white blood cell count started building on their own which they did. If you recall this is the timing when your blood counts drop because I had the other chemo treatment the week before. So all this was sort of expected. I say sort of, because it's always surprising to me when I have been feeling so good to be suddenly low in the blood volume and therefore feel fatigued, weak and lightheaded.

The reason I didn't get a chance to update you is because I spilled water on my laptop while I was in the hospital over the weekend and it went kaput. But we have a friend, Jimmy Todd, who is VERY gifted by God to bring these things back to life! A computer healer :) He went in and scraped the corrosion off the transformer and voila it was a beauty again! This is the second time Jimmy has saved my bacon in this way (the first time I had dropped the thing and I still can't believe my Dell is working now). We really appreciate your generosity Jimmy!

I was given some materials about the transplant and insurance process which seems quite daunting. We need to call them to see what they cover and don't cover. Please pray for God's provision for our financial needs. I'm sure He will provide because I know Him to be a faithful and loving God.

I also need to call UCLA again and find out the status of the preliminary search. Who knows how quickly I'll be in there getting the trasnplant, but I have a feeling it will be sooner rather than later. It could be in the next 2 weeks or the next 2 months.

My mom and her husband Glen left yesterday in their RV - sad to see it drive away! We enjoyed their 5 week visit and wish they could have stayed for the holiday, but they had a sense of urgency due to the snow storm coming in Colorado. For Thanksgiving we had many offers and are pleased to stay local and enjoy the fellowship of our friends the Austins and Dalfornos. Thank you for your invites and your prayers and I hope you all have a wonderful Thanksgiving.

1 Chronicles 29:13 "Now, our God, we give you thanks, and praise your glorious name."

Thursday, November 13, 2008

Woohoo! Home Again and New News from UCLA

That was the quickest stay at Cottage I've ever had - only 3 days! I'm home now and feel tired naturally. The chemo is a wollop to the system which I especially notice in the stomach right away. The premeds they give to help with nausea and to make the chemo work better is a steroid and that causes my cheeks to swell, sweaty and oily skin and hair and a bit of insomnia. But overall, it went really well.

I have new memories of precious servants at the hospital...please pray for my nurse's aide (God knows her name) who lost her 16 year old daughter in a tragic car accident two months ago. She and her family - husband and 3 other younger children - are all terribly heartbroken as you can imagine. Pray for their strength, their healing and their relationship with God and each other.

I also met Lolita, a dear woman of God who came to visit me as a stranger and left as a friend. She is there to meet anyone who needs someone to talk to or pray with, as she is an assistant Chaplain. I loved hearing about Lolita's passion for the Lord Jesus and her devotion to serving Him. She shared some exciting stories of God's favor in her church's ministry.

I reconnected with Hangama which was a pleasure. She's from Afghanistan and would like to go back some day to bring healthcare education to women and children, but not until it's more stable. Hangama brought intellectual stimulation to me as she's a very smart lady and loves to share her thoughts on the world and religion. Even though we disagree on many issues, she is gracious to listen to me as well, and we respect each other all the more.

After I got home from the hospital I got lots of hugs and kisses from my boys and we played a rousing game of Hearts to celebrate. After lunch, I accompanied my mom and Glen to my chiropractor's office so she could get her kinks out that she's lived with since her first triathlon last May. On the way home, I had them drive by the ocean to show off a little more Santa Barbara to Glen. We got out and took some photos of the amazing Pelican landing and watched a little bit of the skateboarders' craziness at Skater's Point, our local skaterboarding ramp park that sits across the bike path from the ocean. Here's a photo of me taking picture of those birds:

Ok, now for the great NEWS! Enough of this sightseeing and reminiscing stuff, right?!

UCLA called today and let me know...after a preliminary search of the bone marrow registry, there were 16 potential matches! 16! The woman in charge of my case says she's very experienced and that this is a VERY hopeful. She is just giving me a very premature phone call because she wants to keep me informed which was nice. She said there are about 5 potential matches from cord blood which is ideal. These are very preliminary. They don't even have data back on what size the doses are that these cord blood donations are...the size has to be right for my body size. However, she mentioned that they could increase the cells by growing them in the lab before injecting them into me. The preliminary search is just the first step. The donors have to be notified (if found), then more testing done on them before we find the perfect match. But with that many potentials, the likelihood is very high that this will happen sooner than later. She said that there are times when she does a preliminary search and there are no preliminary matches that come up. So 16 and 5 were high numbers to her and very encouraging news to us!

So now we get started on my own testing for my stem cell transplant. I need to go to UCLA next week for a full day to take blood tests, EKG, chest x-ray, pulmonary tests (breathing into a tube for measuring lung capacity) and maybe more that I've forgotten. So, perhaps a spend-the-night is in order from our L.A. friends - we shall see!

Thank you for your offers to stay with you when we're in Los Angeles by the way (you know who you are)! I found out today that the Tiverton House (UCLA's guest hotel for patients and their families) is where they want Mike and I to stay for 2 weeks after the transplant, when I'm an outpatient. Originally, I had thought they wanted Mike to stay there during the whole time I was in the hospital. Nope. He is allowed to stay in my room overnight in the hospital. But I imagine that sometimes he'd rather spend the night at a friend's house and commute to UCLA at the off-peak traffic times. We did that last time we were there and it only took 15 minutes to get to without traffic. Not sure how it will play out right now, but we're trying to look at all of our options.

Platelet and red blood donation in the L.A. area can be earmarked for me during that time and they do a good job organizing that once I'm there. We'll let you know more details when we get them.

Enjoy your weekend! And keep praying for the very perfect match! And we will continue to trust God when He promised me in Psalm 41, "Blessed is he who has regard for the weak; the LORD delivers him in times of trouble. The LORD will protect him and preserve his life; he will bless him in the land and not surrender him to the desire of his foes. The LORD will sustain him on his sickbed and restore him from his bed of illness." For those of you new to my blog, this is the verse the Lord gave me after I heard that I might have a relapse of leukemia and I prayed to Him for help. It's also the promise that has given my kids such a peace about this whole experience. Praise God!

Tuesday, November 11, 2008

Day 2 of a Short Stay

I arrived back at the "hotel" as we refer to it yesterday (Monday). I started my 2nd chemotherapy treatment at 1 PM. I'm currently in remission, but while I wait for a bone marrow donor match, I need to keep it in remission with these treatments. This time though, they cut back the dose to 4 doses instead of 6, and they're letting me go home in 3 days instead of 7. We'll do the neulasta injections right after I get home so my white blood cells won't drop to zero this time - hallelujah! And I'll be getting prophylactic antibiotics and antifungals to prevent infections. I'll get blood work done 3 times a week. I was achy like what you feel when you have the flu after my first chemo treatment today. But despite that and despite my 2nd dose starting at 1 AM, I had a good night sleep.

Today, Day 2, was a GREAT day due to all the wonderful visitors that came and the fact that I didn't have any treatments to deal with. All of my day visitors got to enjoy the beautiful weather and views that my rooftop location provides on the gorgeous patio. First Emily came with, yes, M&Ms - she was definitely paying attention to my Facebook status! Thanks Emily...she also came with my favorite DVDs by Beth Moore, the most gifted Bible teacher to women that God has ever given. Then my husband and kids came for a nice lunch break and we played some roaring games of Hearts and Crazy 8's. Later, Pastors Troy, Drew and Andrew came by for a great visit on the patio where we chatted and they encouraged me in God's Word and prayed for me.

The verses that spoke to me the most today come from Psalm 73, which Andrew Valle shared with me today:

23 Nevertheless I am continually with You;
You hold me by my right hand.
24 You will guide me with Your counsel,
And afterward receive me to glory.
25 Whom have I in heaven but You?
And there is none upon earth that I desire besides You.
26 My flesh and my heart fail;
But God is the strength of my heart and my portion forever.
27 For indeed, those who are far from You shall perish;
You have destroyed all those who desert You for harlotry.
28 But it is good for me to draw near to God;
I have put my trust in the Lord GOD,
That I may declare all Your works.

Those verses meant a lot to me because it's just exactly how I feel. Even though my body is going to go through the ringer over the next several months, I know that God is my stronghold, the only thing that keeps me going and the One I will continue to praise no matter how tough this temporary experience gets.

I must say that through all the love I've been shown by you all, I've been able to experience just a taste of what Heaven must be like! Praise God for all His wonderful deeds - for keeping me so strong through this, for keeping me as healthy as possible, for helping my family and keeping them strong and healthy, and for all His provisions. He is a great God! You are great friends and family, whom God has used in taking care of us.

Speaking of that, if you have brought meals to our home in dishware you'd like back, please come back for a visit and take them home with you. Most of our meals came from my homeschooling community and boy, do you all know how to cook! YUM! We enjoyed every meal, the quick ones ordered out too, and how sweet you are to make your family favorites for us. A couple of meals came from others who hit the spot with an In-N-Out run. So thank you all for your generosity including the shopping list runs and even providing the groceries for us at times! It was an overwhelming feeling of love we had from you all and we thank God for you so much! Thanks for stepping up to His calling on your hearts. Ok, now for some pics of the day...

These photos are of the service dogs that come visit - the golden mixed breed's named Chico and the little white dog is Rambo. The kids love when they get to see the dogs that come around. The hillside view of the Mission is taken from the gorgeous patio I told you about. The sunset was unbelievable tonight and was taken in the final throes from my room window. Enjoy!

Thursday, November 6, 2008

Latest News

This morning I went to see Dr. Wolliver. I found out my blood counts were excellent - hemoglobin is 11.4, white blood is 4.1 and platelets were 238k. That's great news and because of my healthy state, my UCLA doctor, Dr. Schiller, told my local oncologist that we can cut back on the dosage of the chemo I'm about to go back in for on Monday. So instead of 6 doses, I can receive 4. AND, usually I'd spend a week in the hospital for this, but I'm going to be able to stay just 3 days and then go home, being monitored 3x/week as an outpatient. This is GREAT news!

I have a lot of information coming at me about the bone marrow transplant, and all it entails. I posted yesterday about some of that. But there is so much more I want to tell you about. Some of you have expressed interest in donating blood and platelets when I need it AND I will! However, are you willing to go to UCLA to do so? It took us 2-2 1/2 hours to get there. I have instructions on how to do it and what it entails, like which medications to avoid taking prior to your donation. If you're interested in that and will be able to go to UCLA to do that in the future (when I'm down there as a patient), then email me and I'll send you the information you'll need.

We're going to be needing to be down at UCLA for 6-8 weeks, my husband staying at a UCLA Guest House or UCLA's Tiverton House. I had heard it was subsidized by UCLA, but nightly rates are still at least $139! We're waiting to find out if insurance covers these costs. Please pray that Blue Cross does.

I want the match to be found quickly, but then I picture myself away from my family during Christmas and think it may be that I'd rather have to wait a longer time. Then I remember that our insurance company is changing to another one in January and what a nightmare that could be so I hope for it be soon again. These things are beyond me and only God knows what's best...He is in control of it and I know whatever happens will be for the best because I love Him. Romans 8:28 says, "And we know that in all things God works for the good of those who love him, who have been called according to his purpose."

Yesterday I spent a little time taking photographs around town after taking Trevor and Adam to Trevor's casual soccer pick up game at the Mission. I think my blog needs a little color with some photos. When I started my blog my camera had been kaput and now I've got a new one to document life's special moments.

Wednesday, November 5, 2008

Description of Impending Bone Marrow Transplant

So many of you have asked me privately, what does a bone marrow transplant entail? Well, here's a good description, and if you have little time to read it all, at least read "What a Patient Feels Like" so you know how to pray for me...yuk. The ball is about to get rolling as they begin the match-finding process. I have to get another round of chemo here in Santa Barbara to keep it in remission while I wait, probably next week. I'll probably post again tomorrow after a consultation I have with Dr. Wolliver in the a.m.



A day or two following the chemotherapy and/or radiation treatment, the transplant will occur. The bone marrow is infused into the patient intravenously in much the same way that any blood product is given. The transplant is not a surgical procedure. It takes place in the patient's room, not an operating room.

Patients are checked frequently for signs of fever, chills, hives and chest pains while the bone marrow is being infused. When the transplant is completed, the days and weeks of waiting begin.


The two to four weeks immediately following transplant are the most critical. The high-dose chemotherapy and/or radiation given to the patient during conditioning will have destroyed the patient's bone marrow, crippling the body's "immune" or defense system. As the patient waits for the transplanted bone marrow to migrate to the cavities of the large bones, set up housekeeping or "engraft," and begin producing normal blood cells, he or she will be very susceptible to infection and excessive bleeding. Multiple antibiotics and blood transfusions will be administered to the patient to help prevent and fight infection. Transfusions of platelets will be given to prevent bleeding. Allogeneic patients will receive additional medications to prevent and control graft-versus-host disease.

Extraordinary precautions will be taken to minimize the patient's exposure to viruses and bacteria. Visitors and hospital personnel will wash their hands with antiseptic soap and, in some cases, wear protective gowns, gloves and/or masks while in the patient's room. Fresh fruits, vegetables, plants and cut flowers will be prohibited in the patient's room since they often carry fungi and bacteria that pose a risk of infection. When leaving the room, the patient may wear a mask, gown and gloves as a barrier against bacteria and virus, and as a reminder to others that he or she is susceptible to infection. Blood samples will be taken daily to determine whether or not engraftment has occurred and to monitor organ function. When the transplanted bone marrow finally engrafts and begins producing normal blood cells, the patient will gradually be taken off the antibiotics, and blood and platelet transfusions will generally no longer be required. once the bone marrow is producing a sufficient number of healthy red blood cells, white blood cells and platelets, the patient will be discharged from the hospital, provided no other complications have developed. BMT patients typically spend four to eight weeks in the hospital.


A bone marrow transplant is a physically, emotionally, and psychologically taxing procedure for both the patient and family. A patient needs and should seek as much help as possible to cope with the experience. "Toughing it out" on your own is not the smartest way to cope with the transplant experience.

The bone marrow transplant is a debilitating experience. Imagine the symptoms of a severe case of the flu - nausea, vomiting, fever, diarrhea, extreme weakness. Now imagine what it's like to cope with the symptoms not just for several days, but for several weeks. That approximates what a BMT patient experiences during hospitalization.

During this period the patient will feel very sick and weak. Walking, sitting up in bed for long periods of time, reading books, talking on the phone, visiting with friends or even watching TV may require more energy than the patient has to spare.

Complications can develop after a bone marrow transplant such as infection, bleeding, graft-versus-host disease, or liver disease, which can create additional discomfort. The pain, however, is usually controllable by medication. In addition, mouth sores can develop that make eating and swallowing uncomfortable. Temporary mental confusion sometimes occurs and can be quite frightening for the patient who may not realize it's only temporary. The medical staff will help the patient deal with these problems.


After being discharged from the hospital, a patient continues recovery at home (or at lodging near the transplant center if the patient is from out of town) for two to four months. Patients usually cannot return to full-time work for up to six months after the transplant.

Though patients will be well enough to leave the hospital, their recovery will be far from over. For the first several weeks the patient may be too weak to do much more than sleep, sit up, and walk a bit around the house. Frequent visits to the hospital or associated clinic will be required to monitor the patient's progress, and to administer any medications and/or blood products needed. It can take six months or more from the day of transplant before a patient is ready to fully resume normal activities.

During this period, the patient's white blood cell counts are often too low to provide normal protection against the viruses and bacteria encountered in everyday life. Contact with the general public is therefore restricted. Crowded movie theaters, grocery stores, department stores, etc. are places recovering BMT patients avoid during their recuperation. Often patients will wear protective masks when venturing outside the home.

A patient will return to the hospital or clinic as an outpatient several times a week for monitoring, blood transfusions, and administration of other drugs as needed. Eventually, the patient becomes strong enough to resume a normal routine and to look forward to a productive, healthy life.


It can take as long as a year for the new bone marrow to function normally. Patients are closely monitored during this time to identify any infections or complications that may develop.

Life after transplant can be both exhilarating and worrisome. On the one hand, it's exciting to be alive after being so close to death. Most patients find their quality of life improved after transplant.

Nonetheless, there is always the worry that relapse will occur. Furthermore, innocent statements or events can sometimes conjure up unpleasant memories of the transplant experience long after the patient has recovered. It can take a long time for the patient to come to grips with these difficulties.


Yes! For most patients contemplating a bone marrow transplant, the alternative is near-certain death. Despite the fact that the transplant can be a trying experience, most find that the pleasure that comes from being alive and healthy after the transplant is well worth the effort.