Monday, November 30, 2009

Remembering A Year Ago

Did you know there is a very certain odor in the hospital? I will never forget the distinct scent when the double doors opened to the Pediatrics Unit for Hannah to be admitted one year ago today.

It was a year ago today, the Monday after Thanksgiving, that I took Hannah to the doctor to get checked & have blood drawn to see why she had so many bruises. I remember driving West on the 210 Freeway when the doctor reached me on my cell phone just a few hours after our morning appointment. I remember him saying things like " Hannah is very ill probably not leukemia but something very serious ... get to the hospital, pack a teddy bear, you will probably sleep over at least a few nights." What he should have said was: TAKE YOUR CALENDAR & THROW IT INTO THE BLENDER, YOUR LIFE HAS JUST BEEN HIT BY A BUS! Hannah was in-patient for such a long time!!!!

How has it been a year?

I don't know but it's been a full year & I am standing here today as a complete testament to God's amazing grace. It is only His strength that has carried all of us through. He is so faithful & on this day of Hannah's Aplastic-versary, I have to say: THANK YOU, LORD!

Thank you that my girl is here to decorate the tree, to sleep in the same room as her sister, to have gone 2 months now without a transfusion, to be in an acting class, to say to me a million times a day "look at me, Mom", & of course, to drive me crazy in so many ways. :-)

My heart is so grateful to the Lord for all He has carried us through during these past 12 months. God is faithful.

No matter what you are going through today -- NO MATTER WHAT -- He is there. If you will let Him, He will carry you through. I know this for a fact. I know this as a mom who went for a long time living on a hospital unit with my 7 year old attached to an IV pole. I know God is faithful & He is my loving, kind & caring Heavenly Father that I can trust NO MATTER WHAT.


"As for me, I will always have hope; I will praise You more & more. My mouth will tell of Your righteousness, of Your salvation all day long, though I know not its measure." Psalm 71:14-15

"The Lord reigns, He is robed in majesty; the Lord is robed in majesty and is armed with strength. The world is firmly established; it cannot be moved. Your throne was established long ago; You are from all eternity." Psalm 93:1-2

Thursday, November 26, 2009

Happy Thanksgiving

Hannah lost her first tooth tonight & her comment was, "It is the night before Thanksgiving & I am losing teeth not my hair". Chemo was to have started on Thanksgiving as preparation for the BMT.

I feel like I just keep repeating myself but there are no words to describe the tremendous joy of having Hannah out of the hospital & on the road to remission.

I want every person that reads this blog & has supported us during these very difficult months to know from the bottom of my heart how grateful I am.

I have never once felt like I was walking this road alone and in the midst of some very dark days, that knowledge has always been a gift. I am grateful to the Lord for so many that have cared for our family, prayed for us & helped us in many practical ways.

Our entire family is so thankful for the tremendous support we have received.

We are truly blessed.

Even in the joy of this time, my heart is heavy for those we know that are enduring this disease right now in the hospital: Ethan, age 4, at City of Hope -- fighting fevers, cold symptoms & waiting for engrafement of his new bone marrow. Erin, a friend of ours from NIH, with an infection in her central line.

No matter what is going on today -- burnt yams, dry turkey, crying babies, whatever -- just count your blessings. There really are so many!

Wednesday, November 25, 2009

Just Plain Happiness In Cambria, CA

Considering that we were going to be in Seattle for Hannah's bone marrow transplant right now it is just too much to even explain the joy of this mini-vacation.

Just beyond thankful  ...

Friday, November 20, 2009

Numbers Going UP

We went to clinic today & Hannah's numbers are going up.


I am overwhelmed with emotion to be a front row witness of Hannah's road to recovery. What a blessing, especially less than one week before Thanksgiving to see her numbers rising. We had been scheduled to start her bone marrow transplant prep on Thanksgiving day. Thank you, Lord, that we are home & life feels n-o-r-m-a-l!!!!

Her white blood cell count is just about into the low normal range .. did I really just type that? Yes, almost into the normal range. Her platelets went up 10K on their own & her hemoglobin is holding (despite having to get her blood re-checked this afternoon b/c the first test showed her hemoglobin as being critically low).

I am so excited because we are leaving this Sunday to spend a few nights in Cambria. It will be so nice!!!

I am so grateful for God's goodness & His ever present help to me in my never ending moments of need!!!

Please take a click over to Pearl River Outreach to see how you can help some very special orphans in China during this season. The little girl we sponsor, Callie, was just placed with her forever family. When I told Hannah that Callie had been adopted she reacted as if Callie was coming here -- she was so incredibly excited for Callie to have been adopted. It was adorable to see her joy for Callie & now we are ready to sponsor another one of these precious babies!

And, finally, please pray for two kids we know from this world of Aplastic Anemia:

Ethan & Noah.

Noah lives a few towns over & he was diagnosed with Aplastic Anemia in September. He is plowing through many bleeding issues that this disease typically causes. I know how hard it is for any child to deal with this disease, not to mention how exhausting it is to be the mom dealing with all the complications.

Ethan has been in isolation in his room at City of Hope with his mom for 2 weeks. He is waiting for his new bone marrow to engraft. Nothing would be a better Thanksgiving gift than to see his blood counts to start rising on their own!!

If you'd like to send a card to Ethan, he is four years old & the address is:
Ethan Barrios
City of Hope Hospital Pediatric Unit, Room #3123
1500 E. Duarte Road
Duarte, CA 91010

My heart just breaks for the journey of this disease ..

Wednesday, November 18, 2009

Sunday, November 15, 2009

Happy Birthday, Hannah!

Today my sweet Hannah turned eight. HOW has it been eight years since I heard "it's a girl" at Loma Linda Hospital?!

I always knew she was an amazing little girl but she has proved it over & over this past year with all the challenges she faced. I didn't know her inner strength until this year ... thank you, Lord, for giving her what she has needed to get through so much!!

After everything we have been through it just felt like Hannah's birthday was a gift to us all. Just to have this day. To have her here. To all be home. To not be in the hospital. To not have an IV pole attached ... the day was just a gift!

We spent the day at Disneyland for hours & hours & hours.

Hannah is a delight to have as a daughter. She brings joy, laughter, happiness, and more fun than I could have ever imagined.

I am so proud of her in so many ways but particularly the way she is in her role as "Big Sister". What a gift she & Lily are to one another!

Hannah, you are so loved! I always go through the whole list with Lily of who loves her but just know the list is just as long for you, sweet girl!

I am so incredibly proud of you & thankful that God chose me to be your mom. You are a blessing to my heart .... & to so many!!!!!!

I love you forever -- XOXOXO!!!!

Friday, November 13, 2009

Pictures That Never Made the Blog

Kim gave me 2 CD's full of pictures of Lily from her time of living with them over this past year. Here are just a few of the pictures that never made the blog ... if you can't tell from these photos, life was one big party @ the Slazas house for Lil!!

Field Trip with "Auntie Mom" & the kids

Disneyland parade & loving it!

Lucky Charms, anyone?

Shop at Costco, anyone?

Lily L-O-V-E-S "Uncdole" ... he has spent many, many hours playing with her & the bond is very apparent!! Thank you, Uncdole :-)!

I saw this picture for the first time last night -- hysterical the things they were up to. Balls up the shirts -- so funny!!! Kim is not expecting ... well, except for a basketball maybe.

Why, Lily, you are growing up so quickly!

This picture above says it all! Lily gets so excited to go over there & the love she has for them is forever! Thank you Slazas family for all the fun & for all these great pictures plus hundreds more. I am so thankful to have her first year in America documented so well despite missing so much of it.

PS -- Hannah's numbers were unchanged at clinic & we don't have to go back until NEXT Friday ... no transfusions & she is doing really well!!!!! Thank you, Lord!

Wednesday, November 11, 2009

Just Another NORMAL Day

Hannah's doctor at NIH said to hold off on giving red blood cells until Hannah is symptomatic (also, our dear friend Alan called -- he is a doctor friend that is like family to us). Alan really encouraged me to not get caught up in what Hannah's numbers are for just one visit to clinic. Thank you, Alan, for the encouragement to just keep an eye on the trends ... and those trends have been stable!! A lot to be thankful for. We will go back to clinic on Friday to check things & make the doctor here feel comfortable :-)

Here is a picture of Lily from tonight -- it was just her & I. So nice to have an outing with my little girl - just running errands & having frozen yogurt together. I have missed so much time with her & finally I am starting to feel back to myself. Being with Lily is so fun & such therapy!

PS -- The countdown is on to Hannah's 8th Birthday -- she will be 8 on Sunday!!!!!!! She was given some money as a special gift & she wants to use it for annual passes to Disneyland. It is kind of like a 2nd "Make A Wish" ... of course, after all her Hollywood adventures this might be like a 5th "Make a Wish" ... can't have too many when you have been through what she has been through! Thank you, friends, for this gift!

Tuesday, November 10, 2009

And we went to clinic today ....

& they weren't even expecting us. I guess Hannah's name never made it to the schedule but they took us after a few minutes of waiting & Hannah got blood drawn. We made a lot of jokes with the nurse about port accessing. So thankful that we are not doing that anymore!!!!!!!!!!!! It is just amazing to go to clinic, have Hannah bring her line out from underneath her shirt that is attached to her body & have her blood drawn. No stress. No tension. Clinic is just plain fun to see friends :-) .. thank you, Lord!!! Lily can even come with us on days like this because I don't need to worry about helping Hannah get through the appointment.

Hannah's numbers came back with her platelets holding steady (once again, right around 40K) but her hemoglobin dropped to 7.7. The doctor here wants her to get red blood cells tomorrow. Jim is going to call our NIH doctor in the morning to see if they agree or if we should wait a bit longer to give her a transfusion. So disheartening to hear that her hemoglobin dropped this past week.

Aplastic Anemia is just one big stinking roller coaster. I am so thankful we are home right now .. not complaining ... but I just want her healthy. I just want to know that she is 100% healed.

Guess it doesn't work that way. At least, not yet.

Ethan's bone marrow transplant happened today (it was supposed to be Monday) -- just pray he would do well as he waits for the donor cells to find their way to his bone marrow. His donor is a 20 year old guy from Germany ... just amazing to think that this young man anonymously saved this little boys life today. Incredible! There were additional complications (I guess the bag with the marrow leaked!?! They were able to recover 95% of the cells but there is concern for contamination.) Pray for no infections. My heart is just so heavy for Ethan & his family ... I guess because it all hits so close to home.

Don't take one day of healthy, happy, crazy, normal life for granted ... it can all change in an instant.

All God's best from HOME --

Saturday, November 7, 2009

A Week of Normal

Hannah's counts on Tuesday were good: wbc 3.2; hemoglobin 8.1; platelets around 40k. We are still on hold for the bone marrow transplant & will know more after our visit to NIH on December 21st for Hannah's bone marrow biopsy. Please just keep praying that her bone marrow will continue to respond to her treatment from June & that her body will get back to work all on its own. We are all just so thankful for these days out of the hospital & the normalcy of life right now.

Hannah helped me re-arrange the living room this week & she was hilarious! It was a mixture of her acting skills & her experience of watching HGTV with my mom. At one point, she said about some pictures that I had on the wall: "Mom, see those pictures over there -- it is like they are saying: We are trying to decorate but we are not doing a very good job" I almost wet my pants laughing .. it was so funny! Oh, the brutal honesty of a child ... love it!

We had so many normal things this week, a wonderful life that I do not take for granted:
Went shopping at IKEA (I let Hannah do all the picking out, thank you very much!)
Girl Scout meeting
Katie babysitting at our house (versus Lily being at her place & us at the hospital)
Lunch at Chick fil A
Hannah started an acting class in Studio City & she LOVES it. The class is just on Saturday's for 2 1/2 hours.
Hannah's teacher came to visit twice this week (Hannah's doctor still won't let her back in school b/c of her counts ... it has a lot to do with low hemoglobin & all the swine flu stuff).

Lily is being so sweet ... and so determined ... and so adorable ... and so talkative ... and so funny. She is desperate to make friends. The girl is just wired this way. When we came home from China, before I knew Lily's personality, I swore I'd never put her in any kind of pre-school until she was at least 4. Well, let me just say, that isn't going to work for this little pumpkin. She talks every day about "FRIENDS" We put her on the waiting list of a fantastic pre-school that Hannah went to. When we went to drop the paperwork off I was explaining to her that this is where she is going to make friends. Ever since then, at least a few times a day, she says: FRIENDS!?! It is very hard to explain the concept of "waiting list" :-)

One night at bedtime I was talking to Lily about her foster sister, Meredith, and I told her one day we would get together with her so they could still be friends. Lily said, "Morning?!" As in, can we go see Meredith in the morning? Soo cute!

OK -- Hope everyone is having a great weekend! Please say an extra prayer for a friend of ours from this crazy world of Aplastic Anemia, Ethan. He is so little & about to have a bone marrow transplant at City of Hope on Monday night. He has completed his chemotherapy & radiation. Pray for his Mom, Jennifer, that God would give her every ounce of strength that she needs to get through as the full time parent with him at City of Hope. Pray also for his brother, Cole & dad at home in the LA area. My heart just breaks for this journey that none of us would choose to be on. Here is a picture of Ethan & his family, he is on his dad's lap -- please pray!

Wednesday, November 4, 2009

Trip Away

All was well this week with Hannah's blood counts (well still low but not as low as in months past) - she is holding steady to where she was last week. No transfusions needed right now - truly a miracle!

I got away this weekend by myself for my birthday to beautiful Cambria, CA ... here are a few pictures I took & added verses:

All God's best from HOME!!!! :-)

Sunday, November 1, 2009

Precious Treasures: Fundraiser

A dear friend of mine, Satu Prutti Nelson, has a heart of gold & just recently she sent me this original oil on canvas of Hannah & Lily. She painted this out of the kindness of her heart to bless our family.

Isn't this spectacular?

Thank you, Satu - you are such a joy to my heart!!

I am now re-organizing my living room walls to make a perfect spot for this incredible piece of artwork!

But that's not all, I want to do something much bigger & Satu has agreed to help!

Many of you that read this blog have a special love for children, especially orphans. Recently our family started supporting a wonderful organization, Pearl River Outreach, that helps to provide food, shelter & love to children in China before they are adopted.

As a special fundraiser for Pearl River Outreach, I am selling prints of this piece of artwork. All of the funds raised will go directly to Pearl River Outreach.

I am beyond thankful for my two precious treasures & I want to share thankfulness & giving to other children in need!

Below is a link to Paypal for all orders to be processed online. Orders will be shipped & received in plenty of time for the holidays. There are four size prints available -- use the drop down menu to select the size print you would like.

Size Print

All God's Best --