Happy Meals

It has only taken this long to report on the outcome of Erica's procedure because it took some time to believe that it was true . . . that, in fact, she could be eating without gagging. It's been more than two weeks and it IS true . . . it is fun to eat again (for all of us).

I never realized the extent to which her constant gagging and choking had been impacting us; I didn't realize that I had been eating my meals and at the same time holding me breath, waiting for her to make that face that would signal that the food was "stuck". Bob and I would literally take turns running to get the paper towels so that she could spit her food out.

Now, all is calm at meal time and Erica is trying more foods and enjoying her new eating experiences. I can't describe the weight that has been lifted.

It's funny to say all of this, like it was such a big deal after everything we've been through . . . but that's the way life goes, it's all relative isn't it?

Erica is getting more and more excited about being a big sister. She is asking more often about when "she" will be here and she wonders if she will be 3 or 4 when the baby comes. So cute! I am now 6 months pregnant and feeling it! I am very tired most of the time, mainly do to the road travel that my job requires but with Bob's help, my mom's help, the babysitter's help . . . wow, I have a lot of help. Thank God!!

We are blessed everyday that Erica continues to demonstrate her warrior spirit; she is so strong and energetic. Even still, we are fortunate to be able to qualify for a program that will allow us to bank and store the new baby's cord blood. We will determine, early on, if the baby is a match. I will just write what Kay (our nurse) said, "Let's hope we get a match with a fat, juicy cord that we never need to use". Amen.

Speaking of donor blood, we are sad to say that we have not heard from the donor. We reached out a couple of months ago with our contact information and though there has been some confusion with regard to the communication with the donor's facility, we have yet to get any response. We are still hopeful that this is just a "paperwork issue" and that he will one day reach out.

Happy Spring!

Megan

Seeing Pink

It's going to be another girl for the Livesey family . . . for Bob's parents, this makes five grand-daughters!! We are thrilled (as we would be, regardless) but it is so fun to know and to begin imagining life with two girls. Erica is very excited and has already offered to share her room with the baby.

Baby is due July 15th and, in the meantime, we will be busily preparing . . . getting down the baby swing and infant carrier that we used only 3 and a half years ago.

Prayers for a healthy baby and a successful procedure for Erica tomorrow.

It's the Little Things

Erica's two year panel of tests call came back looking very pretty. I could certainly go into details but I think that the end result says it all; organs look good, blood completely matches the donor and the gvhd is under control.

The one thing that continues to be a struggle is Erica's swallowing; she gags and chokes 2 or 3 times, at every meal. What started as a nerve wracking chain of events is now common place; we just allow her the calmness to gag up the food and then spit out whatever she can. And then we all go back to our meals. It is now just a drill but one that we wish would end. She has been to the docs and she has undergone swallow evaluations by speech and occupational therapists. We have played with several theories but in the end, nothing has worked. So, this coming Monday, she will go under anesthesia yet again and they will perform an esophogoscopy procedure. During this procedure they will be able to view her upper airway and digestive tract. Our hope is that there will be some indication of what is causing this eating disruption. It's one of those catch 22's, we hope they find the answer but we hope they don't find anything that is wrong or worrisome.

It is hard to say if this is a direct consequence of her treatment or perhaps ramifications from the internal GVHD . . . I am sure it is all connected. It's just frustrating for us but Erica rolls with it . . .she continues to eat what she can and doesn't make a fuss. At the end of each gagging episode she collects her breath and then says to us, "I'm OK".

This Friday we will get to tell Erica if she will have a brother or a sister!! We are all very excited.

I'll be sure to share the news on all fronts just as soon as we hear (or see). Please keep Erica in prayer next Monday that all goes well with her procedure. As parents, we just continue to hope that all of these little side effects go away, and you know, they are . . . we can't ever lose sight of how far she has come. I just sometimes think about the questions she may have about her new sibling . . . When does he or she get her tubes put in? Where are her or his tubes? How many "buggies" (meds) does he or she get mama? When do we give her or him the shot? Why doesn't he or she get a shot? ~~All in time, these and many more questions will certainly be asked. It's ok though, she'll continue to learn more and more about the journey that she has already traveled.

In Faith.

Two Years BMT

Hard to believe it's been two years since Erica received the gift of a bone marrow transplant. Everything is still so crystal clear in my mind about that period of time; the weeks leading up to the transplant and the night that she was literally infused with new life. So much has happened in the past two years, not the least of which is her recovery. We all know that the weeks and months post transplant were difficult but at some point Erica just emerged from it all with an energy and zest that seemed almost impossible given the circumstances. But she just moved past it all and that meant that we did too . . . pretty soon it was time for swimming and tumbling and school.

Medically speaking, this two year anniversary of the BMT is notable. Every year closer to her tenth anniversary brings her closer to being considered "cancer free". So, on February first she will have the two year check up; we will meet with Dr. Taylor and Kay and then she will have her EKG and blood work. We expect that all of these test will be fine. In addition, we will make her appointment at the Mind Institute so that they can continue to document her cognitive abilities post cranial radiation/chemo/BMT. Erica is still on seven medications and continues to receive her Growth Hormone shot every night. We still look forward to each and every decrease in medication . . . imagining the day when no meds are necessary. But all in all, her doctors are very happy, on all accounts, with Erica's progress and energy.

Two years also marks are official ability to contact the donor. Kay will submit the paperwork to the donor's transplant center and we will hope to hear back soon. We will just open communication at first and then, our ultimate hope is to be able to meet him someday. Perhaps we will share the book of this blog with him, and then he will know, fully, the depth and extent of our love and gratitude for his selfless act.

Celebrate with us today; raise a glass to all the organ donors in this world, to those that have overcome and to those we remember, to those who are still battling . . . celebrate their strength, courage, and endurance; celebrate all the small victories and in our case, celebrate every year closer to those amazing words . . . CANCER FREE.

If you want to celebrate "Erica style", have a CUPCAKE!

Happy "Birthday" Little!

New Year, New News

The holidays were wonderful . . . Santa, a new doll house, family, lots of cookies and a birthday party for baby Jesus (fit with cupcakes and all). Erica is already asking when we get to have Christmas again!

As many gifts as Erica tore open on December 25th, one of Erica's favorite gifts was the news (that came in early November) that she is going to be a Big Sister! Sometime in early July, we will have a new little member of our family. Erica has already made great demands for a baby boy . . . but after meeting baby Bella Garbo on New Year's Day, she's thinking a "baby Bella" sister wouldn't be so bad. Erica is already saying "HI" and giving my tummy kisses. I think that she is going to be a great sister.

I think a lot about being pregnant with Erica, my pregnancy was so easy and there is such an awe about being pregnant for the first time. I think back on how little I knew about what was to come; there is such a sweet innocence about it all. I think back on the fact that there was no way to know or even contemplate the type of news we received only sixteen weeks after meeting our baby girl. So of course our prayer now is that this baby is super healthy! Bob and I talk a lot about really experiencing "babyhood" outside of the hospital setting. This will really be a "first" in so many ways as Erica's first two and a half years were spent in such extraordinary circumstances. We're all very excited and yes, we will be sharing the boy or girl news as soon as we find out.

Speaking of looking back on Erica's first few years, I must share with you another amazing Christmas gift. As a surprise for me (and actually for the whole family), Bob took every blog entry from December 2006 to December 2009, formatted the entries and the photos, wrote a couple of "chapters" himself, obtained a "forward" from Dr. Doug Taylor and then had all of the contents beautifully bound in a hard back book called Erica's Journey: A Mommy's Blog, A Testimony to the Strength and Courage of a Child. It is amazing, this whole experience captured in a book, with words that I barely remember writing, during times a crisis, times of fear and times of intense appreciation. It is a treasure.

2010 brings a great deal of hope, growth, joy, and celebration. January 23rd will be the second anniversary of Erica's transplant . . . her "other" birthday. We have begun taking the steps necessary to meet Erica's donor.

Happy New Year!

The Holiday Season

Fall has been a very busy time in the Livesey home; Erica is engaged in all sorts of activities and she is loving the fact that Nana and Papa are now practically neighbors. Nana has been watching Erica two days a week since I went back to work and the other days are split between preschool and home with her babysitter, Chandra.

In October, Bob and I ran the Nike SF Half-Marathon in honor of Erica and In Memory of Sammie. We ran with friends and neighbors and actually had a great time . . . and a very "hilly" run.

Thanksgiving was blessed with the presence of Great-Grandpa who came up from LA to join us. He is just a joy to be around and oh how he loves his great-grand daughter.

This morning we were in awe as we woke up to SNOW. Three to four inches of snow had fallen and stuck to the ground . . . it looked like a winter wonderland. Erica, Bob and I ran outside to build a snowman and take it all in!

Erica is doing so well. Still in the midst of her immunizations, they are going well and her body is responding as it should. Her last blood tests were "beautiful" as nurse, Kay, says. Erica has grown five inches this year; we are so thankful that the growth hormone is working. Last time we saw Dr. Taylor he finally dropped the dosage amount of Prednisone/steroid (yahooo)! We will petition to meet her donor next month.

It's all good news and feelings of gratitude as we approach the second anniversary of Erica's transplant.

God Bless.

Dreamin' Tour

About a year and a half ago Bob and I made a deal, we would someday pack up the car and take Erica on a road trip. We had been in the hospital for so long, we were not able to go anywhere for any length of time do to her consistent blood draws and infusions, and at the point that we had this conversation, we were required to keep her indoors 24/7. So, for fun, we planned a trip and we called it the "California Dreamin' Tour". The trip consisted of San Diego-beach, Sea World and swimming, LA-visit with family, beach, and Disneyland, and then Monterey Bay Aquarium. We discussed other possible stops along the way and just enjoyed imagining what it would be like to just be able to leave with our little girl without the daily fear of an ER visit. And so, in September of this year . . . The California Dreamin' Tour became a reality.

The highlights of Erica's trip were, the pink hotel (in La Jolla), the whale that goes up and down (at Sea World), the tea cups, Mickey and Minnie, Snow While, Sleeping Beauty, Tinkerbell (all at Disneyland), Gene Burd (my uncle), "Gate Gandpa" (great-grandpa), and swimming! She still talks about all of these things . . . . her memories of our vacation.

We had a wonderful time; nana and papa came for most of the trip. My mom's favorite memory (a much anticipated event) was holding Erica thru "It's a small world". We all had tears in our eyes . . . "we're here, we're really here, and Erica feels great!"

I remember telling people many, many months ago that when I report that Erica is getting her immunizations, that will be the next milestone, that will be a time to pause, smile, and recognize how much healing has taken place.

Erica received her first round of immunizations last week.

In two weeks, she will go in for a blood draw to determine her blood's reaction; basically we will know if the immunizations were effective or not. If not, we will wait until her immunosupression decreases. If there is a response, we will go forward with the next round. She is basically starting from scratch (as a newborn would). It is really a wonderful thing.

Now, in the spirit of reporting the whole story . . . Erica's leg became infected after the shots. Huge bummer; she is on another, new, antibiotic to rid her body of the infection. She hates the taste of the med but understands that it will help her leg feel better; she is a very good sport but demands that the dose be followed by an M&M.

Speaking of M&M's . . . Erica hit yet another milestone - she is daytime potty trained!!!! Woo-hoo!!! We just switched to Princess Panties, said "bye-bye" to the diapers and two days later she's down with the program. Oh, yes . . . as long as the successful potty mission is followed by an M&M.

Great things to report, we are truely blessed.