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.