Saturday, October 31, 2009

Trick or Treat ...

Happy Girls ... Happy Halloween! :-)

Thursday, October 29, 2009

38 Years of A Great Life

Today I turn 38.

After a couple of years of helping my sister in law, Roisin, through her battle with cancer & living a lot of these last 11 months on a pediatric hospital unit, I have something to say:

Embrace your age & don't complain about "getting old".

When Roisin died people would say (and still say), "wow, 42 years old ...she was so young". So True!

But if 42 is so young to die why is it too old to live? I don't get it. People complain all the time about turning a certain age or "getting old".

Life is good. If you are reading this, you are very much alive & there is nothing about your age not to be happy about. Be thankful.

This past year has been beyond any challenge I could have imagined but it has been filled with many blessings and it has given me a new perspective on this wonderful life God has given me.

I am thankful for so many things but here are just 38:

1. The laughter of my daughters .. and the fact that I now have "daughters" ... plural!!!
2. Jim & that he lets me be me
3. Soft towels & bed sheets (b/c let me tell you, Nate Berkus has not manufactured hospital towels or bed sheets!!!)
4. Nurses that care & go beyond the call of duty.... too many to even mention ... you know who you are & I love you!
5. A child life specialist named Holly in Maryland & Claudia in California.
6. Friendship with a dear young guy named Daniel. We all still remember him & know that we will see him again in heaven!
7. My bathtub ... soaking is therapy.
8. "Party in the USA" by Miley Cyrus. Lily sings along & says "up little bit" (for me to turn it up)... life is a party!
9. The kindness of strangers.
10. A girl named Kylee that left a legacy of sharing books with critically ill children.
11. The Make A Wish Organization
12. Emily that works at Build A Bear in NYC & gave my Hannah a time she will never forget!
13. Vicki Allen & all she did to rally so many for Hannah's Magical Day on 10/17/09
14. Hannah's recent blood counts that do not require transfusions!!!!!!
15. The Aplastic Anemia Association & all the information they have provided during our journey this past year.
16. A 46 year old man in Europe that is willing to give his bone marrow to save my daughter's life
17. Friends ... how to ever say thank you for the way my heart has been encouraged during the darkest of days?
18. God's gift of a dear friend & sister named Kim ... what would my life be like w/o you?
19. My parents that continue to encourage me & love me each day (Dad just called to be the first to wish me a happy birthday .. how sweet!).
20. A red wine named "Kitchen Sink" ... :-)
21. Our house.
22. A serviceman that I met on a flight, as he was coming back from Iraq & gave me a battle patch to give to Hannah since she was in a battle for her life.
23. Health: shoulders in place, face working fine (no bell's palsy)!
24. My sisters. Life without sisters would just be wrong.
25. Cousin Blair & her selflessness as she helped me this summer
26. Dr. Agnes Horvath at Kaiser Fontana ... an angel filled with only love & care
27. Dr. Phillip Scheinberg at the National Institutes of Health ... a brilliant & caring doctor that has calmed our fears during the worst of storms.
28. The fall flag in front of my house & the sign that says "Home Sweet Home"
29. Wonderful places that we have stayed during hospital stays: The Children's Inn & Ronald McDonald House
30. Massive amounts of hand-me-down clothes from another China treasure, Mia
31. The blessing of adoption ... beyond words that God chose me to be Lily's mom.
32. The Lord and only the peace that He can give!!
33. God's grace ... I never appreciated His grace as much as I have this past year. Can't imagine walking a day of this road without His unending & unconditional love.
34. Our sweet dog, Joy. And another home for a sweet dog named Abbie .. thank you Chance for wanting a beagle (and Ben & Virginia for saying "yes")!
35. Cherry Zero
36. Fun memories of times in the hospital: IV Pole Dancing, eating Captin Crunch with Hannah @ 3am, Lily sleeping over with us on some occassions, watching Food Network together & staying up all night too many times to count ..
37. Knowing that the future is already known by the One who knows me.
38. Understanding more of what it means to "not worry about tomorrow because tomorrow will worry about itself"

... all I have is today & I am beyond thankful!!!!

PS -- Photos were taken by a photographer at the fabulous event that I attended on 9/11/09 for Make a Wish Mothers at the St. Regis Hotel & Spa. I was being such a goof ball! Thank you Valory for the care of your staff!!!

Wednesday, October 28, 2009

Tuesday, October 27, 2009

Hannah's Numbers

Lily just refused to do a normal smile while posing with Hannah & Grandma .. it was funny!

Today we went to the clinic & Hannah's blood cell numbers are still holding. Nothing short of a miracle!! Actually her hemoglobin is up a bit on its own. Hannah's white blood cell count was down a tiny bit but that is to be expected since she has been fighting some kind of cold or flu.

Tomorrow is one month since her last platelet transfusion & today is 2 weeks since she received red blood cells. This is the longest time period that she has gone without transfusions since she got sick last December. It is just a miracle to go to the clinic without the drama of the port & to not have her needing transfusions. Our clinic appointments have become so much easier!!!

Thank you to so many that continue to encourage us & pray for Hannah's healing. It is just amazing the number of people that care for us (so many we have never met)!

Above are some pictures that I never got a chance to post while my mom was here visiting. Grandma went back home last Friday ... we miss you & love you so much .. thank you for making the long trip to the West Coast. Nothing better than having you here for the good news about Hannah's transplant being put on hold.

Saturday, October 24, 2009

Halloween Party

Hannah & her wonderful doctor at Kaiser Fontana, Dr. Agnes Horvath -- a true angel!

Hannah gets a tatoo!

Lily discovers the candy!!

Thanks to Uncle Kevin, Lily very much knows what "M's" are .... Yummy!!!!

When we got the invite for this Halloween party I didn't think we'd be here. I thought we'd be long gone for Seattle ... but here we are!!!!!!! Thank you, Lord, that we are all still home & Hannah is doing so well!

Last night was an incredible party put on by the same organization that did the prom & the Easter party. Adonai, serves families with critically ill children -- what a blessing!! Thank you Adonai -- we had such a fun time eating carne asade, playing games & getting candy!! Hannah even sang "karaoke" for the crowd of 300+ ... but she was a bit upset that the DJ had the microphone turned off. I guess he didn't realize what a pro he had on stage!

Lily was dressed up as a little bear & Hannah was a doctor (thank you Dr. J. Taur & Dr. A. Taur for scrubs & a coat!). So fun!

Wednesday, October 21, 2009

Wordless Wednesday

Major News: Clinic Update on Hannah

We went to the clinic yesterday & Hannah's numbers are doing good -- again. Her wbc 3.5; hemoglobin 8.9 (but she was transfused a week ago) & her platelets have gone up to 40k on their own!! Her body is actually finally producing something on it's own!!! She has not had a platelet transfusion since September 28th.

I just talked to one of the nurses at the clinic & she gave me a message that Dr. Horvath talked to our doctor at NIH & they have decided to HOLD OFF ON SEATTLE FOR RIGHT NOW!!!!! We are going to do some more "wait & see" for a few months to see if Hannah's bone marrow will continue to come back on its own.

Please, Lord!!!!!!!!!!!

What a miracle day ... please just keep praying that Hannah's happy bone marrow will find its way back to Hannah & we can avoid the Bone Marrow Transplant all together.

Tuesday, October 20, 2009

Gifts to Pediatric Unit & A Trip to the Pumpkin Patch

Today we went to Kaiser to deliver the gifts from the "toy drive" at Hannah's party on Saturday. What could give us more joy than to bring gifts to the kids that are staying on "Hannah's unit" at Kaiser Fontana?!? Hannah had so much fun walking down the hall with the wagon figuring out which gift to give to each child. A teenager was very happy to receive a keyboard, a little boy was very happy to get light brite, magnetic puzzles were a big hit & a baby doll is going to a little 2 year old girl in the ICU ... and that is just to name a few of the gifts we were able to give away. Truly, thank you to everyone at the party on Saturday that brought a gift or toy. We still have more to give away so thank you to everyone for helping us share love & kindness with others :-)!! Hannah is super excited to give out more gifts once we get to her hospital in Seattle.

After Kaiser, we had a nice afternoon visiting the pumpkin patch in Oak Glen. The girls had a great time seeing animals (sheep, horses, peacocks, ostriches & goats), searching for the best pumpkin (well, Hannah & Grandma did that!) & eating yummy treats at the bakery. A nice time just enjoying a Fall activity we do almost every year!

Tomorrow we go for Hannah to have a breathing treatment (standard procedure) & then we see her doctor in the afternoon & get her numbers checked. Hannah has been coughing this afternoon & more this evening. Tonight she was saying she wasn't feeling great so we will see what is going on.

We go from normal to who knows what?!?!

All God's best from our HOME ...

Sunday, October 18, 2009

Hannah's Magical Day

Friends from our church, PFB pulled together a wonderful party for Hannah on Saturday.

The Lord blessed all of the efforts & every detail came together in such an incredible way (especially since planning only started 10 days ago!). So many people donated & pitched in to make this party happen -- thank you, dear friends!!!!!!!

Thank you to each & every person that went out of their way to make this such a memorable day for Hannah. It was a a day to celebrate all that Hannah has made it through & a send off before we go to Seattle.

Vicki Allen, I owe you so much for pulling this incredible day together! Thank you for your heart, your care, your organization, your attention to detail & pushing this party quickly onto your calendar which I know is already incredibly full with life as a mom, wife & attorney -- among other things! You never cease to amaze me!

Thank you to every one in my Sunday School class at Pomona First Baptist, Fusion, for all each of you did to make this day so special! Thank you to the Duetts class for taking up an offering so we could have a bouncy house & slide at the party. Thank you to Catalyst class for helping with so many details! Thank you to The Original Mobile Taco Grill for providing, serving & donating lunch for the party! Thank you to Ed "The Magic Guy" for donating a wonderful magic show! Thank you to Mark Maverick from iRadio LA for working as the DJ & providing karaoke for free. Thank you to Niagra water for providing 20 cases of water bottles! Thank you to Cinderella (Natalie!) from Disneyland & her magical friends that came to meet Hannah! Thank you to PFB for providing so many details & making this day possible!

People from all over the community came together so that every single wish on Hannah's list came true!

I am so grateful ...

Here are just some pictures from Hannah's Magical Day:


PS -- Hannah's blood count numbers on Friday were stable from earlier last week. Her white blood cell count was down a bit but probably because she has been fighting something. Also, I moved Hannah's first appointment in Seattle to November 12th ... it works out better for our schedule & now she won't be starting chemo on Thanksgiving Day, if we have to move forward with transplant. We are starting to talk more about the transplant & what will be involved. I have not used the word "chemo" yet but she knows that she might lose her hair from the medicine that she will be getting before transplant.

Thursday, October 15, 2009

Still Moving Forward

I have a firm date with Seattle for Hannah's first appointment.

November 5th.

It will then be two weeks of appointments for pre-transplant testing, including a bone marrow biopsy on November 9th. The BMT coordinator that I talked with today said that if Hannah's bone marrow is working at the cellular level they will send us home without the transplant. She has done it before with other patients -- it is not common but not out of the realm of possibility.

I found out today that Hannah's donor is a 46 year old male from Europe (CMV negative, like Hannah). That is all we will know about her donor until at least one year after transplant. At that point, if he would like to be made known, we will be able to get in touch with him.

So, we are still walking this road ... hoping for an exit or off ramp before we get to transplant.

Tomorrow we go to clinic to check Hannah's numbers. I am so curious to know if they have continued to hold or if they have dropped this week.

Lily has been at Kim's all week -- poor girl is still coughing up a storm & was running a low grade fever today. Kim took her to the doctor today & he thought it was best for her to be away from Hannah so they don't share this virus.

My mom booked a ticket this morning to come to the West Coast tomorrow (go, Mom!) .. I know she is missing the girls like crazy & we are missing her! It will be great to have a week together.

I have some cute pictures from Brownie Girl Scouts today but I will have to post them later. Hannah & I made it to the meeting ... yeah for troop #11564!!! Hannah got a badge today that truly says it all: BROWNIES CAN DO ANYTHING!

Wednesday, October 14, 2009

Hannah Goes Hollywood ... Again!

Brenda Song, Hannah & Cole Spouse .. on set of Suite Life on Deck

Hannah & Debby Ryan

Hannah & our wonderful host, MK, at the Suite Life on Deck

Yesterday afternoon I got a call from my dear friend Tracey that she arranged a personal invitation for Hannah to visit a rehearsal of the Suite Life on Deck today!!!! Late in the evening I almost called to cancel because Hannah was still not feeling well. She stayed on the couch all day yesterday & her temp was never below 99.4.

I didn't cancel & today when we woke up Hannah's temperature was normal & she felt great! We made it to the Hollywood set of Suite Life on Deck by 11:30am & got to stay until about 1pm watching rehearsal. Hannah was the only visitor on the set, so there were only about 20 people there including the director, actors, & our host, MK. Thank you, MK!! The time was just amazing for Hannah & she has decided that once she is cured she is starting acting classes. You go, girl! I will support her for whatever she wants to do (well, almost anything) ... like my parents did for me!

Because Hannah's counts were so good at clinic on Monday, her doctor here & her doctor at NIH are talking about maybe delaying the date for her transplant to see if her body might still respond to the treatment she got in June.



It is so hard to process especially after getting the call from Seattle Children's Hospital on Monday that they have a firm date for her bone marrow transplant. While I am hopeful that she might avoid the BMT, I am still preparing & bracing myself for the transplant road.

Please, Lord, just let her be healed before a transplant!!!! That is my heart's desire. Please just let this long road of her illness be over!!!

Thankfully, Hannah has a renewed energy since her port is gone. When we have gone to clinic, twice now, with her new line, she is her happy little self -- dancing & singing. I feel like since that port was removed, "Happy Hannah" is back.

She is a gift. Each day is a gift.

Transplant or not, I am thankful for today ... and for the fun we got to have in Hollywood .. and for the joy of sitting across from her at lunch at Mimi's Cafe .. and the delight she is to my heart.

I love being her mom & I am forever grateful for the gift of her precious life!

Thank you to so many of you that keep our family in your prayers .. there just are not the right words to express my gratitude!

God has been so faithful every day during this very difficult road. I know I am walking every mother's worst nightmare but I just can't imagine walking this road without the grace that only God can give.

Thank you, Lord!!!

All God's best from HOME!

Tuesday, October 13, 2009

Quick Update on Hannah

Hannah woke up with a temp of 100.7. I started packing our bag as I was calling to talk to the doctor. Surprisingly, the doctor said that we could stay home unless her temperature hit 101 because Hannah's counts were so good yesterday when we went to clinic. Wow! That is a first for Hannah!! Usually if she hits 100.4, we have to get right to the hospital. Hannah's ANC was over 2,100 this week ... the highest it has ever been (when she was first diagnosed it was 77).

We are still at home tonight. Hannah is not feeling good -- she is definitely fighting some kind of a cold or something. Thank God her body has enough blood cells right now to actually fight something!!

Keep praying that Hannah's bone marrow will kick in! We go back to clinic on Friday to check her numbers again & to talk to her doctor. We are all very encouraged that her platelets have remained stable for over 2 weeks & that her white blood cell count is almost into the low/normal range. What an answer to prayer it would be if she recovers without a transplant.

Today I was making a list of what to pack for Seattle & I just felt a bit of what Abraham maybe felt as he was taking Isaac up the mountain ... begging God to please not let this happen.

God knows. I don't understand any of this but I keep on trusting Him.

All God's best from HOME --

Monday, October 12, 2009

A Date for Transplant and I feel Sick

What am I supposed to be feeling right now? Not sure. But really, most of me just feels sick that we are actually nailing down a schedule for Hannah's bone marrow transplant at Seattle Children's Hospital. It just can't be. It can't be that we are quickly approaching a year of her illness & she needs to have a BMT.

I talked with our Kaiser coordinator today & it turns out Seattle will be doing all the pre-testing (they require us doing it up there with them). It looks like we have to be in Seattle the first week of November for all of her testing to be done on an outpatient basis. They will be doing LOTS of tests to get a baseline on all of Hannah's organs before the transplant. Hannah will then be admitted to the children's hospital right before Thanksgiving to have chemo & radiation. It is hard to even type that. Just unreal. Her transplant date is currently scheduled for either 11/30 or 12/1.

On another note, we went to clinic today to check Hannah's blood levels & make sure her platelets have not dropped. Her numbers were again stable (still low) but her numbers have not dropped dramatically like they usually have for the past 10+ months. Who knows??? Maybe her bone marrow is finally getting back with the program. I don't know. We won't really know until they do a bone marrow biopsy in Seattle. At that point, they can see what is going on at a cellular level inside her bone marrow. If her bone marrow is doing well, we can turn around & come home. It is not too late so please keep praying that Hannah's bone marrow will be back.

I am thankful we have a perfect match donor. So thankful. I know many people wait a long time to find a perfect match donor but I am still praying that we can avoid the BMT. I still have hope that the ATG will kick in & Hannah can get back to normal life without a BMT. That is my heart's desire but no matter what the road is, I trust the Lord. I am scared. Really, who would I be kidding to say that I am not scared -- I get nervous when Hannah rides a roller coaster at Disneyland, why would I not feel scared for her to have chemo, radiation & a BMT? I have my fears but I do trust the Lord. I know with all of my heart that my Hannah's life is completely in the hands of our Heavenly Father.

Lily is at Kim's tonight with a runny nose & a cough. Hannah seems to maybe be fighting something as well .. she is starting to sound like she has a cold to me, she has been sneezing & now telling me her throat is sore. Oy. Who knows .. maybe we will win a trip to the hospital this week? I sure hope not .. we have some big plans this weekend!!!

If you pray for our family (which I know many of you do), please pray specifically that Hannah's bone marrow would miraculously kick into gear within the next 6 weeks. Until they start the chemo it is not too late to avoid a BMT.

All God's best from HOME --

Lily's First Haircut & Dedication at Church

Just wanted to post some pictures from Lily's 1st haircut (well, I guess from her first "American haircut". Her hair had been cut in China by her foster mom.).

Yesterday was Lily's dedication at church. I am SO thankful for the amazing love & support I have from our awesome church family at Pomona First Baptist...thank you, friends!

The first snip ...

I love how Hannah is observing & seems to be evaluating how the cut is going.

Pastor Glenn praying for us.

So grateful to still be at home and out of the hospital ..

All God's best,

Friday, October 9, 2009

Life Just Seems So Normal

Hannah getting red blood cells today at the clinic. She was sound asleep from the Benadryl that is given as a pre-medication:

Hannah's new line getting accessed for the first time at clinc this past Tuesday. We DO NOT miss the port:

Lily & I out on a walk while Hannah was having "school" at home with her teacher:

We are enjoying all things normal & it just doesn't seem real that we are preparing for Hannah to have a bone marrow transplant. As of right now we are on track to go to Seattle (still waiting to find out exact date) but it can all be canceled if Hannah's bone marrow starts working on its own (so keep praying!). Her bone marrow is doing something but I don't know if it will be enough to avoid a BMT. Probably not. Today we went to clinic to get red blood cells & her numbers were the same as they had been on Tuesday. That was a first for her. Everything was the same ... granted, her numbers are still in the low range but they had not dropped in 72 hours. I think that is the first time her blood counts have remained stable since she got sick last December. Her counts were: wbc 3.5; platelets 28k; hemoglobin 7.4.

Lily got her first haircut this week. I will upload some pictures when I am able. Nothing major just cleaned up the back of her hair. She keeps holding her hair saying, "Lily hay cut". So cute!

Lily loves to play & will command that you "sit, play" -- except when she says it, it sounds like "shit, pay". Hilarious!

Hannah officially started 2nd grade this week with a Home / Hospital teacher that comes to our house. Hannah TOTALLY connected with the teacher, as she is a cancer survivor, & they discussed many different things. I am so thankful that Hannah is feeling more motivated again for learning & for reading.

I am truly enjoying all things normal. Cooking (yes, I know - family, don't faint!), cleaning the floor, changing the diapers, running errands & even seeing friends. I am so grateful for this time of normalcy. This time at home is giving me a much needed break from hospital stays & a much needed second wind before Seattle.

Lily is getting dedicated at church this Sunday. Finally after over a year of being home!!!!!!!!!!! Can't believe it! So for all our PFB friends, Lily's dedication is at the start of the 9:45 service. Hannah will be also there since she is out of the hospital right now. Hannah might be a bit overwhelmed by everyone (just a warning. maybe she won't?). If you are sick, please stay back ... she does not need to get a cold or the flu. Thanks!!

We are all just home and I am loving life. Grateful for each day as a mom -- truly it is a gift!