Two Years

Today is the two year anniversary of the day that Erica was diagnosed with leukemia, she was only four months old. I think back now on that day that changed our lives forever and I am only filled with gratitude.

We have been through so much and when I take individual, fearful nights or procedures or times when Erica was really, very sick and I think about the heartache, of course the experience looks different. But when I stand on the balcony and look out over the two years in its entirety, I am only filled gratitude. Gratitude for our healthcare providers, our family and friends, Erica's donor and God's healing hands.

Because the blog is also for Erica, so that she can read about her experience someday, I want to say this . . .

My sweet Erica,
You have shown us all what spirit is all about. You have endured these trials with grace, humor, and love. And my goodness, you are so strong. There are so many things that you have had to do that were painful and uncomfortable and you hardly ever complained. We have been in awe of the way you just adjusted to each and every procedure and environment. You will notice, sweet girl, that along the way, laughter has been the best medicine; in the midst of long hospital stays, we sang silly songs and danced silly dances and you would just laugh so hard. Your laughter gave us energy and hope, thank you for that! There are so many things I want you to know, but on this anniversary, I just want you to know how proud we are of you. In these last couple of months you have blossomed, your stronger and more physical, you love being out and about and you are so social with friends and strangers alike. Our prayer is that this just continues and that you begin to grow and talk and above all, that you stay cancer free for the rest of your life. May God continue to bless you always. ~Mama

Happy Holidays!

It's been so long since I've posted! No news is good news! Erica is doing really well and she is enjoying this holiday season . . . her first healthy holiday season. Amen!

We went to Bodega Bay for Thanksgiving with Grandpa, The Ellis Family and Auntie Chrissie. It was so great to watch Erica play with the other kids and adjust so well to her environment. We had a great Thanksgiving with so much to be thankful for.

The Growth Hormone (GH) is going . . . well, it's going ok. Last night was her sixth shot and so far, it went the best. I think it just takes some getting used to. The devise is different than the syringes that we used for her chemo and now that she is older and wiser, it makes for a challenge! I am sure that in a week from now, we'll be pros!

The medications are frustrating right now, there are seven of them (twice a day) and Erica is getting keen to the ones she likes versus the ones that she would rather spit out (definite sign of a two year old . . . like I said, older and wiser!). We keep hoping that the meds will drop but instead we seem to keep adding to the list. All in time.

Right now Erica is really enjoying her sticker books and she loves "matching" games . . . anything from socks to matching flash cards, etc. She still loves her music and she recently saw a cartoon with tap dancers . . . which she tries very hard to imitate! LOL! Erica takes very good care of her babies, feeding and diapering too! She is a happy child and, although she doesn't say much, she communicates EVERYTHING she needs to communicate . . . the words will come, we're working very hard on it. All in time.

Much love to you and your family this holiday season. We have been blessed by your positive thoughts and prayers. Thank you for visiting Erica's site.

Ready to Grow

These last few days have been filled with phone calls, squaring up the last details of Erica's growth hormone (GH) (Ahh, another acronym)! We are excited to be moving in this very positive direction. Erica will receive a shot everyday, in her leg. We will administer it all at home . . . we'll be trained. I have been trying to make up a song to go along with the routine so that we can make it a pleasant experience. If anyone has any ideas, let me know. Someday she will do the shot herself . . . oh yea, this will be the daily routine for about fifteen years.

The doctor, Dr. Bremer (a new one for those that are familiar with Dr. Taylor), endocrinologist, has estimated that Erica will grow six to seven inches in the first year. This is really a great age to start GH; she should be caught up by the time she goes into kindergarten.

The GVHD continues to improve in her GI and the sore on her tongue is looking a bit better. I wish it would heal faster but . . . I've learned to be patient (kinda).

We are doing some fun kid things lately like weekly story time at the library and a little music class with our friend Emily. We will continue to add group activities but need to be very careful as it is flu season. Get your flu shots! I have been working 4 days a week, mainly from home and we have Jenna here during the day. Erica is loving Jenna, so life around here is getting more "normal".

Thank you for all of your prayers for our family. There is still healing to be done, on many levels, please keep us in your prayers and pray for our friends on the 7th floor of UCD Children's Hospital.

The Rx Update

For the past couple of months, Erica has been toughing it out with GVHD of the GI Track. The GVHD is obvious by looking at her "poops" and there are sores in her mouth. We thought that this would be a relatively easy fix with steroids but even with the increase in steroids, we did not see any improvement. We really wanted to avoid an intestinal biopsy so we were all (doctors too) very patient. Last week we had to report that it was looking worse . . . at both ends. Erica was given a topical steroid for her tongue ; we had to give this to her three times per day. A few days into in it, there were no changes. So, with the help of the pediatric oncology pharmacist, Kaye and Dr. Taylor, Erica was prescribed an experimental way of administering a particular drug. Meaning, the drug isn't new but it is not typically prescribed for this condition nor is it typically compounded in this fashion . . . . oh well. It's working. Dare I say it . . . things really do seem to be getting better.

Once this clears up, and I am sure that it will, the goal will be to taper down the oral steroid that she is still on. The hope, of course, is that she can be off of the steroids and be free from GVHD. Her blood work continues to look good and her liver counts are basically at a "normal" level; yeah! The other medications that she is on are fairly long-term, which is ok, what would Erica do without her "buggies" (don't ask).

Personally, I am doing much better. I made it through the relapse anniversary and the "total recall" that was going on in my head has subsided. I just went through such a powerful stage of remembering so many events and moments from the past two years . . . it was so intense. I wonder if it happens to most parents who go through this; I assume it does. We can only process so much at a time.

Our family has had so much fun lately. We have been able to take Erica outside and actually allow her to touch things and be around kids. She is loving all of her play time and because of it, she is so much more active and energetic.

Insurance forms are getting finished up and within the next couple of weeks, Erica will start the growth hormone. This is a big step and an even bigger commitment, but this is what Erica needs. All of the tests confirmed that her body is not producing the hormone, likely adversely affected by the cranial radiation. We knew that was a risk . . . and this is the remedy. We are so excited to see her grow.

Thank you for your continued prayers. Our family is doing really well and we have definitely found a new sense of freedom with the ability to allow Erica to participate in normal, toddler activities . . . . like "trick-or-treating". Happy Fall!

We did it!

We did it! The Nike Women's 1/2 Marathon was in San Francisco on Sunday! Emily and I ran (along with 25,000 others) a beautiful, inspiring, hard yet scenic distance! We finished in 2 hours and 20 minutes . . . a time that we are very proud of!
Look at the slide show pics . . . when photos say it all! I do want to say Thank You to all of you who sponsored the run and supported all of our training (Bob and Jon!). Erica, Luci and Lance were our little cheerleaders during the race (photos to come!). Thank you Tom and Chrissie for being there cheering . . . especially on that one big hill. And Mom and Tom, did you ever think that you'd still be getting up so early to watch a race this many years later? (inside joke!) Trim, Ambra and Reese, thank you for your support and for your warm home to come to after the race.

Erica inspires us every day, this is just one of the many ways that we will be able to show her the impact she has on our lives, our goals, our strength and our faith.

Emily, thank you for your dedication. Thank you for mapping our runs and keeping us on track with our training. Thank you for your great stories that made me forget that my legs were tired or that we were actually going up hill. Thank you for reminding me to be strong, in so many ways. You are a great friend and a great running buddy . . . 26.2????

1/2 Marathon

That's right . . . it's this weekend! The Nike Women's Marathon is this Sunday in San Francisco! I can't wait for the cool weather, the sites and sounds of the city and oh . . . . the HILLS! We're ready! I am running with my friend Emily and we have been training together for the last four months.

We are running in honor of Erica and Sammie and in memory of Trevor. I am also going to dedicate mile 11 to my friend, Alejandro, who used to be in the infusion room with us. He passed away last year. There are so many children, strong, brilliant warriors who fight cancer everyday . . . we run for them all!

If you are there . . . Emily and I will have a photo of Erica on our shirts, please say HI (and "keep up the good work") if you see us on the run.

Love and blessings to you.

Day at Apple Hill

No words necessary . . . we had a great day at Apple Hill!

Next Steps

Erica is doing well and her skin GVHD is looking much better. The GI track isn't improving as quickly but that was to be expected, I just hope it clears up soon. The stitches from her skin biopsy came out on Monday and she is very proud of her Dora band-aides.

Tomorrow we go in for a growth hormone test where her pituitary system will be tested. This test will include several medications, growth hormone and blood draws. The goal of the test is to determine the level of growth hormone output after she is actually given the hormone. It's not an even input vs. output. If her system is operating under the assumption that is has adequate levels then it will not adopt the levels that we give her . . . making the daily injections unnecessary. The testing will take about 4 hours and then we have been told that she will be a sleepy girl for the rest of the day.

Those are our next steps on this road to recovery. Erica looks good, puffy from the steroids, but active and happy! God Bess!

Light the Night

Light the Night 2008 was a huge success! At the end of the night, they announced that nearly $200,000 was raised for this event alone. How amazing it that?

We had a great time. We got there early and had a great picnic and then the activities began . . . the butterfly release, the Hope on Wheels hand prints, and then the speakers and then the walk! We had a very good Erica's Light team turn out and Erica was in great spirits all night.

The photos are posted, enjoy.

Love and Light!

GVHD Update

We have had a lot of conversations and appointments with Erica's doctors this week, so here is the update . . .

It appears that the GVHD is in her skin and in her GI track. Yesterday we went in for a skin punch biopsy (during which Erica was a total champ!) and decided to wait on the intestinal biopsy until next week (only if it is absolutely needed). Dr. Taylor said that the GVHD is presenting like an acute case versus a chronic case, which is good news. It is a little late in the game to see acute flair ups but anything can happen, as we all know.

The skin on Erica's hands will harden and then peal off. As you can see in the photo, this process is beginning to take place. Her hands are sensitive but she is handling it well.

Thank you for your continued prayers and all of your words of encouragement.

See you at Light the Night!

Return of GVHD

Erica's skin is worse today than it has ever been. We are so sad.

Just when it feels like things are going so well, there is another bump in the road and once again, we wonder . . . when will living in the present be a choice rather than a necessity?

The Graft Versus Host Disease is active in her skin, all over her body and, we fear, it may likely be active in her intestines. She is uncomfortable but managing. The treatment began yesterday; we increased the steroids four-fold and doubled the Cellcept. We also introduced a new medication, mainly targeting to the gut. She gets a pain med at night to reduce the itching and to help her sleep.

GVHD has it's upside, in the sense that it fights against leukemia . . . not that she has any, but if she did, GVHD would kill it. The scary side about GVHD is that it can continue to attack other organs and cause some very complicated, life-long side effects.

There is a different energy in our home today. Bob and I are absorbing the news, trying not to be angry but . . . do you ever wonder how much energy you have left? I keep thinking, "ok, this is enough; we want to move on with our life now."

Please pray for our endurance and strength, for our faith and for Erica's skin and intestines. Please pray for her comfort through this blast of medication. Thank you and God Bless.

Skin in the game

Well, we knew that Erica would have some minor issues going forward and unfortunately, that pesty GVHD is back. We began noticing that her skin was getting worse about a week ago, after we discontinued one of the medications. Sure enough, that was enough to allow the GVH to come back. We saw Dr. Taylor today and increased several medications to get it back under control. She will be ok, but this is something she may likely deal with for a very long time.

Otherwise, things are going very well. Next week Erica will go to physical therapy at the PT facility. It is built for childen so there will a lot of things for her to play on and explore. We are very excited to see how she does.

The growth hormone issue is still up in the air. Erica will have a test in two weeks that will give us a very good idea of IF and How Much hormone she will need.

In other news . . . Light the Night is September 27th! We are very excited for the event! Also, next month is my 1/2 marathon which I will run with our friend Emily. If anybody reading this is running the Nike, please post a comment! We'll look for you on the run!

Thanks again for your continued prayers. This is a sensitive time as we approach the anniversary of Erica's relapse. This is also a beautiful time as we are also mindful of what she has overcome and the life she has ahead of her! Watch out world! as Erica says, "love, love, love".
Amen

Cousin Geoff finishes Pacific Grove Triathlon

Dear Friends:

Saturday was my first Triathlon since college & the first one with an ocean swim. Took Friday off to prepare and round up the gear and food needed for one of these things. I think it would take less stuff to mount a north pole expedition. Bike stuff, running stuff, swim stuff. Filled up the whole minivan.

Drove down to Pacific Grove in the early afternoon for the mandatory "packet pick-up" where they give you your bib number and a bag full of more stuff. Met some nice people checking out the swim course. I felt pretty well prepared since I had trained on the course a couple months ago with my friend Robbie. This time however, you could see exactly how far you had to swim since they had set out very large bright orange inflatable buoys in Lover's Cove. It was hard to believe you had to go twice around to make up the 1.5km. That was a little worrisome. It made me realize my practice swims of 20 to 30 minutes were on the short side.

Headed back north to Marina to Robbie's house. After a long week of teaching middle-schoolers, Rob likes to go for a Friday evening mtn. bike ride on the former Fort Ord property. Lots of sandy single track and fire roads. He promised it would be nice and easy. I figured it would keep me loose and relaxed for the big day on Saturday. We ate a big pasta dinner and headed out at about 7:00PM for the 1 hour ride. About 1/2 hour into it, I realized I should be in bed sleeping after a long day. But the scenery was so great and Rob was so happy to be out and about, I really got into it. We saw a rabbit and two deer before it got dark and I started crashing in the soft sand. When you don't see it coming, it tends to grab your front wheel and knock you down pretty quick. In any case, we made it home without injury by about 8:30PM. Lights out and night night after that.

Woke up before the alarm clock at 5:00AM wide awake ready to roll. Loaded the bike into Rob's truck and headed out in the pre-dawn darkness. Mentally going over all the stuff I planned to use and wondering what I was missing. I think a checklist would help. We pulled into town about 6:30AM and joined the milling masses of multi-sport participants. Did a token amount of stretching, mostly pre-occupied checking out all the triathlon bikes. I realized I was the only one riding a road bike with shifters on the down tube. Oh well, at least I had my clip on aero-bars and I wasn't riding a mtn. bike!

Rob left to go surfing and said he would be back in time to see me finish the run and get some pictures. As I was setting up my transition station and getting my wetsuit on, I heard the announcer say that the Men 35-39 better get out of the water from their warm-ups and move to the starting line because it was going to start in 4 minutes. Well that was a shock! I quit my dilly-dallying and hurried up with earplugs, caps, goggles and hurried down the stairs to the inflatable arch that marked the start line. About 100 powder-blue capped 35 to 39 years old packed in ready to go. I moved to the rear of the pack and could not believe that this thing was about to start. I said out loud to myself "OK, I guess I'm really going to do this thing!"

They said "Go!" or something like that and everyone ran into the water. Luckily I was at the back so no one swam over me. The swim was not too bad because the water was very smooth and the kelp was not too thick for most of the route. Some guy grapped my ankle once but quickly let go. The second lap was easier than the first and my total swim time was 39 min. 37 sec.

Ran out of the water and up the steps to the park where the transition area was. Headed straight to my bike and yanked off the wet-suit and put on my socks, sunglasses and helmet and ran to the "bike out" chute. Transition time (T1) was 2 min. 17 sec.

Hopped on the bike and tried to cinch my shoes but realized one of the straps had come out of the little black latch thingy. I had put a safety pin in there to prevent that from happening, but now it was back-firing. I tried to get it thru but the safety pin wouldn't let it. I pulled on the safety pin and cut my finger, some blood starting to squirt around. They were numb so I didn't feel it. Decided to stop, get off and deal with it. Once that was over, tried to get the legs warmed up. They felt like they were still in the water. Feet and legs kind of numb. First lap spent basically just trying to warm up.

The bike ride was interesting because no matter how fast I tried to go, I would still get passed like I was standing still. They would come up behind you making a loud whoosh-whoosh noise from the solid aero rear wheels. It was like being passed by cars on the freeway. They write your age on your left calf so that you can see at a glance how miserably you are getting pummelled by people both younger and older than yourself. Whoever thought of that is an evil genius. I got passed by guys in their 40's, guys in their 50's and even one guy who was 70! I told myself it was because they had $5,000 bikes and that they were probably on their first lap as the older guys started later. This was my coping mechanism.

Finally, after four long windy laps along the ocean front road, the bike portion came to a merciful end after 1 hour 22 minutes.

T2 took 2 minutes 10 seconds after some confusion on my part about where you are supposed to actually get off the bike. I think I got off too soon.

The run was tough. The legs were declaring indendence from the brain and deciding to do their own thing. I decided to concentrate on the arms. The arms were great, they did exactly as they were told. I was swinging my arms real fast. From the waist up, I was sprinting the whole time, below the waist, I was going pretty slow.

Some lower back pain was a unique feeling, started to understand why the Campbell Tri Team focuses on all that "core work". My core was shot and my right foot felt like it was on fire. I just thought of ERICA FAITH and all she has been through and realized my pain was insignificant.

This was my thought as I ran up the hill towards the finish line. The run took 52 min. 3 sec.

Rob, his wife Cher and their two little girls were there with pom-poms cheering me on which was a great highlight to the morning. Heather, my wife was incredible, giving me a pass for nearly the whole weekend! Thanks Heather! I love you!

Total time was 2:58:24, just barely making my 3 hour goal. Thank you for all your love and support! Stay tuned for the next Erica Faith Fund challenge event.

Yours,
Geoff Bradley

It's been awhile

I just haven't felt like posting these past couple of weeks. I spoke at the Keaton Raphael Memorial golf tournament and then just fell into a funk about the question, "what do people really want to know". I spoke a lot about hope and the support we have received but when all was said and done I wondered . . . what about the hell that Erica has been through, what about the sleepless nights and tears and fear . . . do people want to know about that too? Well, if you have been reading this blog, then you have heard it ALL, I just wanted you to know where I have been. I came up with this all encapsulating thought, that this has been the most painful experience of my life. It has also been the most blessed. It is also the most frightening. It is a life altering, priority aligning, pain inducing, uncontrollable journey.

I've been writing in my journal, which has been appropriate and now I am back. So, how is Erica doing? She is doing really well. We think that we just might be experiencing some "normal" two year old behaviors . . . which I guess we're thankful for . . . if you can be thankful for two-year old behavior!! She is very active, walking everywhere on her own; even trying to run. (her feet go at about the same pace but she pumps her arms really hard! classic). Tomorrow is the next doctors appointment. We are really very eager to hear from her endocrinologist who recently took her blood to test for her growth hormones. Also, we continue to evaluate her skin and her blood-sugar issues. But, all in all, we are enjoying our time outside and we have been out to two restaurants with her, we're getting more relaxed . . . it's nice.

A big event coming up is LIGHT THE NIGHT 2008!
Erica is one of the honorees this year as they celebrate the 10th anniversary of the event.
September 27th at the California State Capitol. Activities start at 6:00 PM and the walk starts at 7:30 PM.
Please join us. All you need to do is register:
REGISTER FOR LIGHT THE NIGHT

Meds Go Down

So happy to report that the spreadsheet of medications is shrinking! As of this week we were able to take two medications off of the list; cyclosporin and the blood pressure med. This takes us down to six doses a day!

Now for the frustrating news, because the steroids have gone down the issue of the blood sugars has come back up. The high dose of steroids was helping to keep her blood sugar where it needed to be, so without that "help" the numbers don't look as good. We are keeping a close eye on it and testing her, in the am, every few days. We have an appointment with the endocrinologist in two weeks. More to come on that.

Erica went to Luci's birthday party yesterday and it was such a special moment! I loved seeing her play with the other kids, she was so sweet and loving to the other kids. When we all sat down to eat she folded her hands and made us all pray together! I will post pictures from the party soon.

That is the quick update for now. We are all going to the Keaton Raphael Memorial Golf Tournament Luncheon tomorrow where I will have the opportunity to speak about our journey and thank everyone for being involved with this amazing organization.

Love and Gratitude!

Little Things

It has been nice to leave Erica's birthday blog up for awhile, almost like a long pause, it has been a time of celebration.

In these last couple of weeks we have been silently dealing with a few little things related to Erica's health. First, there is a question about her blood counts from a couple of weeks ago. Her white blood count, hemoglobin and platelet count all dropped. Now, this is what happens, naturally, in a body when there is a viral infection, except that Erica has been asymptomatic. So, we have gone back to weekly counts to track the trend. Last Monday the counts went up, by a small amount. The next blood test is on Monday. Ok, so then we have her skin. She has what appears to be GVHD of the skin again. It is only visible on her legs and so we are back to twice daily topical treatments. The GVHD is just something that we need to control and eventually it will subside and/or we will just continue topical treatments.

On a very positive note, and yet another reason to celebrate . . . Erica has been out and about! She got the green light to be outside for about an hour each day, without her mask on! (Of course she wonders, "where is my mask?" but is perfectly ok without it). She likes to be in the front yard where she can see the kids playing across the street. They all run over to the sidewalk, careful not to get too close, and they wave and say "hi" to her. It is a sight to behold.

Next week, Erica will go to her first birthday party. Her friend, Luci, is turning two and she is have a party with three of her good friends. I have Luci's present wrapped and Erica is barely grasping the fact that these things called "presents" can actually be given to someone other than her! And so begin the lessons of life!

We are still balancing all of it, the joys and the fears. Erica is feeling really well and that makes the balancing act easier. We see this little girl laughing and learning and it is almost surreal; it just seems like such a gift.

Happy Birthday Erica!

What a wonderful day! Erica's birthday started off bright and early, believe me, she knew it was her special day. She put on her birthday dress after breakfast and she felt like a princess . . . I could tell. At about 10:00, we had all the grandparents, God moms and Erica's best friend Luci over for a little party. Erica did so well with all of the attention. I loved seeing her with Luci; it has been almost a year since she has even been able to play with another child. They did so well and interacted like it was old times (back when they were 1)!

One story I just have to share is about yesterday afternoon. Our neighbors got together with their children (making a total of 5) and called us to tell us to have Erica put her mask on. About five minutes later, they came to the door with 24 balloons and about 5 big, colorful, beach balls and sang the "Happy Birthday" song to Erica. It was the sweetest thing ever . . . Erica just staring out at these sweet people, in awe of all the balloons, just trying to take it all in. People are so good.

Between yesterday and today, we are once again reminded of the love the surrounds us. Cards, phone calls, hugs . . . this little girl has touched so many lives in her two years. I told her tonight as I was putting her to bed, just how proud I am of her . . . and in that moment I literally felt my heart overflow.

More to come on her birthday and certainly more photos; but it you want a sneak peak, I added photos of the big day at the end of the slide show!
Love, Love, Love

Almost 2

Erica's second birthday is on August 3rd. Hardly seems like it could be two years and at the same time, seems like ten. Almost twenty months since Erica's diagnosis. I just added the slide show to the bar on the right side of this page, a recap of Erica's life, so far (there is music too). It is amazing to look back at all of the holidays that we spent in the hospital and yet, all of the fun days we had outside, just enjoying the times when Erica felt well. Yes, I am still in the midst of processing everything that has happened . . . but that's just it, right? a process.

Erica continues to do great. She is getting more and more confident in her walking abilities. Her meds continue to go down and so does her weight. Her height, on the other hand, goes UP. I am going to call her endocrinologist today to tell him that Erica has grown 2.5 inches since the transplant. This was certainly not expected, so we are very excited. We should know in about three months what the plans are for growth hormones. Is it possible that she would not need any? We'll see.

Thank you for checking in. The comments on the last blog were so touching, a true gift to our family. Thank you for your prayers. We are strengthened by your love.

Unique Times

There have been a lot of thoughts swimming around in my head lately; things I wanted to share and things I wanted to document. Here it goes . . .

Where are we at with Erica's treatment/recovery?
Erica is almost 6 months post transplant. She is currently taking 6 medications per day (12 doses). The medications consist of anti-rejection, steroids, anti-biotic, blood pressure, and anti-viral meds. Every day we flush her broviac lines and change the dressing on her broviac site. We are not certain how much longer she will have the broviac lines; there seems to be a lot of superstition about that in the hospital world. Erica has speech and physical therapy every week and she seems to be making good progress. We have recently moved from weekly physician appointments to once per month. I know that I post a lot of good news . . . and it is, good news. And, it is still time consuming and heavy and everyday I still pin her broviac lines to her onesie and wonder~when will this be over?

What are the mommy and daddy up to?
Bob and I are doing well. Bob is working and with a home office, he is able to see Erica a lot. He joins in on the physical therapy sessions and goes to clinic visits with us when he can. He may not be running the Nike 1/2 marathon, since he did not receive a number during the race lottery. Over 80k people went after 30k spots! I am going to go for it, my runs have been slow but I am trying to add distance at this point. I love the exercise and the chance to be outdoors. Three weeks ago I became a working mom; I joined a start up company called, MealWell (www.mealwell.com). We are building an employee wellness program that includes this great on-line nutrition/meal-planning tool along with fitness programs and wellness coaching. I am very excited about it. I'll be working four days per week, which is great.

So there are new transitions taking place and at the same time . . .

How does it feel?
There is a very unique and bizarre feeling about this point in time. Personally, I am very sensitive about what we have been through. In the midst of it all I would allow people to draw parallels to their life and their experiences just so that I could feel connected, but now I am more guarded, feeling like I can barely relate and understand what we just went though, how could anyone else? My daughter's life was questionable, the statistics were not in her favor, and the transplant expounded those odds but we still had to move forward. We just did that and still I am in awe of the situation. But being in this unique place, we are surrounded by other families doing the same thing, making even more difficult decisions, watching their son or daughter in pain.

I think it will be a very long time, many years, before we feel like this is over. Erica's relapse last October was absolutely the hardest thing we have ever gone through, it was crushing. So, perhaps, out of self-protection, we just cherish all of the wonderful things that are happening in Erica's life right now. And do we have hopes and dreams and plans for her? Absolutely! I am just trying to articulate this very sensitive space, this moment in time is not like January/Transplant or December 2006/Diagnosis, it is different and comes with its own set of emotions.

Grateful?
Absolutely. Thank you for all of the ways in which you have supported our family. Please continue to keep us in your prayers. We need peace and we need to be free from fear; we need to give ourselves permission to rejoice in Erica's spunk and development and health!

Love, love, love!

Guess Who's Walking?

That's right, Miss Erica took her first steps on July 10th! And then today, she looked like she was ready to sign up for the AVON 3-day Walk for a Cure! We are beaming . . . it's one thing to see her blood counts improving and medication being reduced but it's an entirely different feeling to see her developing daily, with an energy level that "they" said may never exist. It's three weeks until her 2nd birthday and now I can admit that I have been praying that she walk before she turns two. I can't explain exactly what that means to me except to say that, "perhaps you can understand."

I am trying to figure out how to download the video onto blogspot so that you can all see her strutting her stuff! Stay tuned. We are so excited!

Thank you, Ms. Sheryl, for all of the awesome physical therapy!

Love.

My cousin is going All Out!

From Cousin Geoff...

Well, it was such a fun & rewarding experience running the marathon and raising money for the Erica Fund, I think I am hooked now. See http://ericalivesey.blogspot.com/ for updates on my cousin Erica and her parents Bob & Megan.

I have come up with another chance to raise money for this great cause and would like to make it interesting for prospective donors. Thank you for all of your support and please don't hesitate to make offers on how to do that!

I have signed up for the Wharf to Wharf on July 27th in Santa Cruz. This is a 10K that I have done before and my best time is 48 minutes, 20 seconds.

Also the Dammit Run in Los Gatos on August 3rd. This is a very challenging 5 mile race with lots of very steep uphill portions, my personal best is 40 minutes, 58 seconds.

And finally the Pacific Grove Triathalon on Sept. 13th. This is an Olympic distance event (1.5k ocean swim, 40k bike and 10K run). I'm not much of a swimmer so this will be a very challenging event for me.

My goal is to finish the first two faster than before and to finish the triathalon!

Thanks for your support! I have a goal of raising $10,000 for the Erica Faith Livesey Fund and $3,070 has already been raised. All proceeds to go The Leukemia & Lymphoma Society.

To support Geoff, please go to-- http://www.active.com/donate/ltnSacram/ericafaith

4th of July

Happy 4th of July!

We look forward to family BBQs and swim parties in the years to come; this year we will enjoy our day inside . . . maybe allowing Erica to stay up and watch the fireworks shows on TV.

Erica's blood counts were good this week, still improving. The only bummer was the re-occurrence of C-diff. This is the intestinal infection that she has had over and over again throughout the last year. So we added another 4 doses of medication to our day. She doesn't seem to be bothered at all, rather, more energetic with every sunrise.

Her real hair is coming in and the "cyclosporin" hair is starting to go away. She still has the hair on her face and back but I can tell that it is thinning. The new hair on her head is lighter and has quite the wave to it! I've always said that HAIR is such a symbol of cancer, the way it comes and goes, depending on the treatment. God willing . . . this hair is here to stay!

Miss Erica

She is amazing. Is it ok that I say that? She is feeling better everyday, she tells us so. We are so proud of her . . . I just want to share a few things about Erica.
Right now is a time when we are reliving all of her "firsts". She is pushing her scooter and pulling herself to stand, she is trying to balance on her own and she is saying new words . . . again.
The meds have held steady for the past couple of weeks as her skin continues to improve. She likes having the cream rubbed onto her skin and she still takes her "buggies" without a second thought. She doesn't miss a thing and we are amazed everyday with her progress and her spirit. She is super funny and very loving. If either of us tells her that we are tired, she'll go get her doggy and give him to us. (Of course if your tired, you must need Doggy). Being at home with her is going really well and we have the help of my mom and our new friend, Lindsay.
Thank you for your continued prayers.

The Faith Fairy

Who is the Faith Fairy?

For well over a year now, we have been visited by The Faith Fairy, every other month or so. We will come home or go out for the mail, and there it is, a package on the driveway. Every package has a theme, depending on the month, and in the bag is a poem about how The Fairy came to visit, with full understanding of how we are all doing (based on the latest blog), and constant reminders that God is with us. There is always a little gift for Erica and then a couple of items for Bob and I. The poem is fun and compassionate and we are always left saying. "Who is The Faith Fairy?"

Faith Fairy, we understand if you chose to stay anonymous, but we wanted you to know that we are very grateful for your creativity and generosity. Erica loves the new Elephant Game and we have been saving all of the poems to share with her one day.
~~~~~
Do you know how GOOD people are? I have said, many times, along this journey, that we have seen the good in people and we have seen the ways in which God works through people. Today I received a gift certificate from someone I've only met once, she is a member of our church. Last week we received a donation and letter from the grandmother of a little boy who finished his chemotherapy last year. My point is that these are people that have only been brought into our lives because of what Erica has endured and they have been moved to reach out to us. Ill admit, it is overwhelming at times, my automatic reaction is, "how can we return the favor? how do we give back?" And then I remember the whole "Pay it Forward" approach. When Erica is better, we will have a whole new appreciation for ways in which one person or one family can make a difference in the life or lives of others. The true intention of giving is realized through simple acts of kindness. We could be someone else's Faith Fairy.

I sit here and hope that this message is not misconstrued . . . I just want to say Thank You, to everyone who has reached out to us. You have made a difference in our lives and you have touched our hearts and you have renewed our spirits. Most of all, we will do things differently in the future because you have shown us what it means to give . . . from the heart.

We are so blessed, I sit here in tears. Did Erica know that she would have this kind of impact? . . . sometimes I look at her and I swear the answer to that question could be, "yes, indeed she did."

(issues with Kodak Easy Share . . . working on the photos . . .)

Could it be?

The phone rang this morning and it was Kay, she had our chemistry results from yesterday. The first thing she said was that they looked good and then proceeded to read them off . . . AST, ALT, GGT, Albumin, etc. They were all good. At the end I said, "but what?" She said, "but nothing, that's it, they look good."

Could it be that simple? Her counts look good. Period. Her liver is almost back to normal, her kidneys are almost back to normal, her protein is a little bit high but getting better and we are just so blessed. I think that the "but what?" comes from the need to protect . . . it seems like there has always been a good news/bad news combo.

So today, the But What is this . . .

Erica is doing great! Her counts are good.

Today we go in for an infusion of immunoglobulin, it will take about 2.5 hours and then we are done for the week. We continue to treat her skin (which is also looking good) twice a day. Kay even told us that we might be able to go two weeks without a clinic appointment after today.

Praise God! Answered prayer is a beautiful thing!
Photos coming soon . . . I promise!

With love and gratitude!

Daily Improvements

I've been doing a lot of reflecting lately. I've noticed that along this journey, when things went a week or more with some stability, I'd look back in awe. It is hard to believe what our family has been through and what Erica has endured but my reflection also, naturally, goes to the support we have had and the friends and family that have stood by our side. It was only last week, after writing the blog, that I read the blogs from earlier in the year . . . leading up to the transplant. I was overwhelmed by the intense faith; there was just no other way to go in to it. I suppose I'll always reflect on this time and I will continue to draw strength from the experience. I just hope that the experience ends, it's hard with situations like this, there is no clear moment of completion; there is only hope that things continue to improve.

Erica is doing well, really well. She is active and happy. The skin looks better, not 100%, but darn close. We go in to see the doc tomorrow and he'll continue to direct us on the meds/creams/etc. But as for the blood counts, the liver and kidneys seem to improve a little every week. Amen!

What is "normal"?

Test results are in-- Erica's liver and kidney counts continue to improve and the HUS seems to be going away. The GVHD is still present, a little worse today, but we have a new topical medication that we will start tomorrow. We will need to cover her in the cream almost every 2 hours, alternating between this new cream and the steroid cream. Labor intensive but worth it, the goal is to keep the oral medication where they are . . . we can't afford to increase them.

This is an interesting period of time. We are done with chemo, the transplant has taken place, over 100 days of healing and still, she is monitored daily for changes, we have weekly doctor visits, twice weekly lab tests and countless medications. So we still take things a day at a time. For instance, we had to run to the pharmacy last night for an antibiotic because her urine test showed signs of infection. This process has a way of keeping you right smack in the moment. When I let go of all the questions, ("what will life be like?", "will I go back to work full time?", "who will watch Erica?", "what if . . .?") and when I remind myself that we are still taking it a day at a time, that is when I feel at peace. Through this journey we have learned, intimately, that God is in control here. So, this is our "normal", ever shifting, ever unfolding. We have become more faithful and therefore more flexible, so . . . we'll see what tomorrow holds.

Good News/Bad News

Which one would you like to hear first?

The Good News is that Erica's liver and kidney counts are improving. For the last two weeks, her kidney/protein ratio has dropped by 50% which means that being off of the Rapamune (med) has significantly helped. Erica has grown an inch and a half since the transplant and she is slimming down a little bit every day. Because of this, she is moving around again, pushing her scooter and playing in her "house". Every day is a blessing!

The Bad News is that the GVHD has returned to her skin. We were heart broken to see this as it typically means upping the steroids. We took her in yesterday to show Dr. Taylor and he confirmed that it was GVHD, however, he does not want to increase medication right away. We are going to a topical steroid, 3 times per day for two weeks. I would much rather do the topical versus the oral, she has made so much progress, I can't imagine going in reverse.

We are doing ok with the news. Dr. Taylor assured us that we need not assume that this skin GVHD is chronic. This could mean that her body was exposed to something that got her immune system geared up and therefore the flair up in GVH.

It's just hard to admit that we are still on the roller coaster . . . but we are and bumps are expected. Overall, she is doing beautifully and we thank you for all of the prayers. She is healing and growing and laughing . . . we couldn't ask for more.

Take 2

Ok, so maybe she isn't quite done with platelet transfusions. Last weekend, while visiting Nana's house, Nana noticed little dots of bruising popping in several places on Erica's body. Bob and I were out of town but my mom and her dear friend, Barb, took care of things! After talking with Dr. Taylor, they packed Erica's things, took her to the hospital for a short-stay and got loaded up with platelets. Thank you mom and Barb!

I wanted to share some photos.

First, some proof that Erica really does read your cards! My friend, Kerri, sends Erica a card every week . . . Erica is now watching me go through the mail like, "where is my card?"




Some days are very busy with clinic visits, transfusions and home care. Here is a 'a day in the life of Erica Faith', it always amazing me the number of caring people that touch our lives. Here you will see Dr. Taylor, Melinda (our infusion room nurse and friend), Doreen (infusion room aide and dancing queen), and Colleen (our 'in-home' speech therapist).

Platelets

Guess what? NO more platelet transfusions! WooHooo!

Wendy came to our home Monday morning and her platelet count was great. It has been consistently normal for about six days. Her last transfusion was on Friday and we had one scheduled for this Thursday but with Monday's count being so good, we're only going to draw labs on Thursday and meet with Dr. Taylor. Big prayers that the counts continue to be good!

Continue prayers for her kidneys, they still show some signs of strain. It may require that we drop one of the meds, but would rather not, given that the med is protecting her against other issues.

Erica has been very happy lately, lots of energy and increased mobility. The puffiness is decreasing a little bit every day and because of that, we see bigger eyes and a wider smile!

I'll post photos soon, you won't believe the difference.
Happy Belated Mother's Day! Moms are Amazing!

Progress Report & Event Details

More and more smiles to report. Erica is definitely feeling better and the steroid dose continues to decrease. We went in for a platelet transfusion today and heard back on several test results. Erica's liver counts continue to improve, very slowly but steadily. Her red blood cell and platelet counts are also evening out and our prayer is that we are close to being done with HUS (hence, the platelet transfusions). On a frustrating note, the kidney function continues to show signs of distress and so we have once again, backed down on on the of the anti-rejection medications which is most likely the culprit.

Heads up on a great event . . . The Thanks Mom Bone Marrow Drive! I will be there as a volunteer and I hope to see you there! Spread the news and save a life!

Drive Details - Thanks Mom @ UCDavis Cancer Center

Telephone Number:
Drive Name:	(Bs)Thanks Mom UCDavis Cancer
Drive Location:	UCDavis Cancer Cente
Address:	4501 X Street
	Sacramento , CA 95817
Drive Date:	May 12 2008
Drive Time:	10:00AM - 2:00PM
Map:	View Map

What to expect

Joining the National Marrow Donor Program (NMDP) Registry is easy. Patients need donors who are between the ages of 18 and 60, meet the health guidelines and are willing to donate to any patient in need.

When you come to a donor drive, we will explain what it means to become a donor, help you understand your commitment, answer your questions and help you through the process.

• During the Thanks Mom awareness and recruitment campaign (May 5 - 19, 2008), costs to join the Registry are covered by our generous partners and contributors--for the first 46,000 who join (36,000 at marrow drives).

All you need to do is:

• Complete a registration form with contact information, health history questions and a signed agreement to join the NMDP Registry. To help you complete the form, bring along:
• Personal identification (such as a driver's license or passport)
• Contact information for two family members or friends who would know how to reach you in the future if your address changes.
• Give either a swab of cheek cells or a blood sample so your tissue type can be tested.

That's it! Your tissue type is then added to the NMDP Registry. Doctors search our Registry when they need to find a donor for their patients.

Day 100

Today is Day 100, a kind of milestone in this post-transplant journey. It means that the "acute" phase of the BMT is over and that for medical reporting purposes, Erica's transplant can be termed, "a success". The next 100 days are considered the "chronic" phase; a period of time where we certainly do not want to see any GVHD or other conditions that could be long term. Today we'll go to the infusion room for a platelet transfusion and a meeting with Dr. Taylor; he will document the 'Day 100' status and we'll do some "High 5's" for Erica and her progress!

Erica is feeling really well today! I can tell that the swelling is going down, her feet and calves were softer this morning and her eyes were wide and bright! She is definitely more vocal and energetic. She tried to crawl for the first time the other day . . . it brought tears of happiness to our eyes. Steroids went down a notch again yesterday~Amen!

Today I also want to share an essay that was written by our Niece, Emma. Emma is 13 years old and last November, she was given an assignment to write about her hero. She wrote about Erica. This essay captures so much about our journey: fear, faith, generosity and gratitude. She, not only, commends Erica for her strength but also the people who go out of their way to give back and make a difference! Enjoy! . . . .

Erica- My Hero and Cousin

by Emma Livesey

On August 3, 2006, Erica Faith was born. We thought that we had all of the time in the world to go to Sacramento and meet our new cousin. But on December 11, when Erica was about four months, we found out that we may never even meet her at all. Erica had been diagnosed with leukemia. I just remember my dad saying, “your cousin is very sick, Emmy.” It was one of the scariest sentences that I have ever heard. I couldn’t believe it at first. The feeling was almost indescribable; it was like I was watching myself in a bubble. It was one of those things that our minds and hearts don’t want to believe but you don’t really have a choice. I woke up the next morning thinking that I had dreamt it, but I knew it was real. I never cried though, I just couldn’t get it out. It was too hard.

I knew that my cousin was sick; I just didn’t believe that the disease would win the battle over her. But even so, I wondered, why us, why my cousin? I knew it was selfish, but I still just didn’t get it.

Erica started chemotherapy sometime after Christmas, about the time we went out to see her. Our cousin was in the hospital the first time we met her. Erica looked so lethargic in her mom’s arms, but there was still a twinkle in her eye, a will to persevere even when the odds were against her. I guess that’s part of the reason why I chose her to be my hero. She has taught our family to have faith and to believe. She has pain daily that I think only a superhuman could withstand, and here is little Erica Faith enduring all of it, giggling all of the while.

Erica represents selflessness; never asking questions like why me? Or feeling sorry for herself, she just keeps going. I know that she can’t talk much now, but it really shows through. My cousin also reminds me to ask the question, why not me? After being in remission for a couple of months, Erica has relapsed, and she needs a bone marrow transplant to survive. Which, as scary as it is, it is good to know that she has a whole army of people behind her, doctors, donors, and loved ones who have treated her, walked in benefits, and given marrow all in order for her to survive. This is simply because they asked the question why not me, why don’t I make the difference? People like the people at Benny’s Bakery, who just did a fundraiser called Cupcakes for a Cure, where 50 percent of the profit went to cancer research, they did that because they asked themselves that question, why not me? We can all gawk at the people who do things like this, but when are we going to ask our selves that oh-so powerful question? So I guess that it is just not just Erica that is my hero, it is everyone who has ever taken the step to change someone’s life.

Fun Photos

It has been awhile since I've shared photos. To be honest, it is hard . . . our little cutie doesn't look like herself. But this is how it is now, and she won't be puffy and furry forever . . . so I thought I'd just share some of the fun times and recent infusion room photos. Erica has recently discovered that sunglasses are cool, so everyone should where them--all the time--even her dolls. I included a picture from Cabo (no more pinching myself, I was there and I can prove it!). We have great friends who get us out and about once in awhile and most recently, Bob and I got out for a night in San Francisco . . .we had a blast!

Strong and Brave

Another drop in the dose of steroids today! We now look forward to Thursdays, waiting to get the call from Kay or Dr. Taylor, another 0.5ml drop! YES! Slowly but surely, we are creeping down and slowly but surely, Erica's little personality is coming back. I can see it more and more everyday, through the puffiness and hairy face, there she is . . . on her way back!

Other meds are dropping and her liver counts are inching back down as well. I can't quite keep track of the kidney issue, we are meeting with Dr. Taylor tomorrow . . . so more on that later. Tomorrow will be our third platelet transfusion of the week and we are keeping our fingers crossed that we can do less Infusion Room visits next week.

Erica had her physical therapy appointment today and I was so proud of her! The PT had her on the big therapy ball, rolling side to side and bouncing up and down. Erica was kicking her legs and patting her hands like it was a drum. I don't know if I've said much about the change in her gross motor skills but Erica hasn't pulled herself up or crawled in over a month. Her weight is just too much to carry and her feet and legs are so swollen that she can't even wear shoes. So to see her moving around and experiencing gravity was exciting to me. The PT said that there is no doubt that things will change when she begins loosing the weight (and I think we're close to seeing some changes in that department!).

It's been three months since the transplant; we did the GVHD thing, we have been on a medicine calendar that would make most heads spin . . . HUS and kidney function, platelet transfusions, and proteins. Post transplant has been difficult but it is all in the name of healing. Last weekend I spoke to several people who were hearing Erica's story for the first time and I was able to say, "my daughter HAD cancer" . . . and now it's gone. That was a relief (and it is still hard to hear myself say "daughter" and "cancer" in the same sentence).

Tonight we pray for Ellie, Emily and Sammie and all of the other kids who are fighting the big fight!
God Bless!

Rested and Tan

Erica continues to go into the infusion room three times per week. While the main reason is to receive platelets, she has also needed proteins to help her kidneys. The kidneys hit the radar last week when we began to notice swelling around her eyes, in her feet and hands. After the urine test, the labs confirmed the her kidneys were releasing proteins. This further confirmed the need to taper off of the cyclosporine. So the meds continue to go down and we celebrate with every taper.

We can see some changes in her energy and behavior. She seems to be more vocal now which is fun and she is very animated when she plays. The physical and speech therapist come once a week and we are really enjoying that process as we learn new ways to assist in Erica's development. I think it is also nice to have consistent visitors . . . for Erica and for me!

Ok, so I am excited to tell you that I just got back from Cabo San Lucas. My friend, Chris, qualified for this trip through her work and she was able to bring a friend. She brought me! An all-expense paid trip to Cabo, 4 days and 3 nights, sun, spa and relaxation . . . how could I turn that down? It was fantastic; the resort was wonderful and the company was SO FUN! I was nervous in the days leading up to the trip, this was the first time that I have ever been away from Erica overnight. I think Bob was getting a little nervous too . . . but he did great! He had to take Erica to the hospital and there was even some concern that she would need to stay overnight for some observation of her kidney function, but luckily they were able to go home that night and then visit Nana's house the next day. I think Erica is now a "daddy's girl"! I am so happy that I was able to take the break, there were a few cathartic moments . . . but I needed them, it's hard to let down when I am home, there is just too much going on. We had a great time and I am so grateful to Chris for inviting me, I kept pinching myself and thinking, "Am I really here?"

I got home Sunday night and I brought Erica in to the infusion room at 9am Monday morning! Nothing like getting back into the swing of things. But, I am rested and tan . . . and that makes a difference!

We will go in on Wednesday and Friday of this week. No understanding, at this point, of when we will be able to stop with the transfusions. Prayers are for Erica's kidneys, that they are relieved by the proteins and medication taper; for her liver, that it begin to repair and for Erica's continued comfort and increased mobility.

Happy Birthday Bob!

Day 83

Once again I am amazed by the support and love that surrounds us. Thank you for all of your kind and encouraging words and prayers.

We are doing better this week. We proactively scheduled three platelet transfusions this week so things should go more smoothly. Erica's medication doses are coming down (the ones the cause the liver toxicity, swelling, weight gain, and hair growth) and although we can't physically see any change, we know that it will reveal itself from the inside out. I look forward to the day that we look at her and see her comfortable in her own skin, moving and playing without pain or restriction.

We are getting closer and closer to being 100 days post transplant. 100 days is a huge milestone in the transplant journey. Many of the acute illnesses and side effects will take place within the first 100 days, after that, we won't expect any GVHD or increase in medications.

We are still required to be in the house at all times which can be hard on these beautiful days, but Bob and I get out at lease once a day and we have my mom, Nana, to thank for that. Nana comes over about three times per week and you should see Erica's face light up when she walks in the door.

Please pray for Erica's liver; her counts continue to show a great deal of toxicity. Please pray that the doses of medication to continue to taper down and as always, for her comfort.

Those Darn Platelets

We have been going crazy this week trying to keep Erica's platelet levels up. On Wednesday she started bruising on her tummy and legs so we called her doctor and he had us pack our bags. She and I stayed on the 7th floor Wednesday night; her platelet transfusion was done around 1:30 AM and we were released at 9:30AM on Thursday.

Being back on the 7th floor was very difficult for me. When we got there, we went directly to our isolation room (we haven't been on the 7th floor since before her transplant). It was just Erica and I in the room, waiting for our nurse to come in and I just broke down in tears. "I don't want to be back here, we are done with this place, this floor, these rooms." I could not have predicted that I would be feeling this way, but it was so powerful. Every room has animals painted above the door; depending on what nursing station you're at, you will have different animals. When we got in the room, Erica (as she always does), pointed up to the bunnies, as if to acknowledge them and say 'hello'. All I could think is, "I hate those bunnies."

It's been nearly a year and a half; we've spent over 200 days in the hospital (short stays, long stays, infusion room and the ER), can you blame me for feeling this way?

We went back to the infusion room today, Erica had a three hour transfusion and then we came home. She should be set for the weekend. We will go back three times again next week. The prayer is that the HUS subsides.

This journey has been filled with its ups and downs, this has just been one of "those" weeks. I am just ready for Erica to be off of the steroids . . . I want my girl back.

Thank you for your continued prayers.