Saturday, August 29, 2009

Lily Gets Her Sister Back!!!

Too much to post right now. Too tired & too emotional to even think straight.

I am so thankful to the Lord to be in our own house tonight as a family of four! God is so good ... and my heart is so happy at the thought of Hannah's treatment possibly-maybe-hopefully actually working. It is too soon to know if the treatment worked but certainly the news about her white blood cells being in the normal range is the best news we have had in 9 months. Thank you, Lord!!!!

Just wanted to say a huge thanks to all our friends that made it to the airport tonight to greet us..... THANK YOU!!!!! We were so happy to see you all ... & thank you Marsha for the pictures.

Friday, August 28, 2009

Something Normal ....

We are at clinic at NIH.

Today was the worst port accessing ever (no fault of our wonderful nurse!!!). I think it was because Hannah is just SO DONE with having her port accessed each week. I don't blame her. I am done, too! Plus, after the emotional high of being in NYC for Make-A-Wish I think it was just so hard to come back to the reality of life with Aplastic Anemia.

But the most amazing news of today ------ Hannah's white blood cell count is in the NORMAL RANGE. Yes, N-O-R-M-A-L!!!!!! It is only her white blood count so her hemoglobin & platelets are still low but I am cautiously feeling a bit that maybe-possibly-please-please-please-hopefully-could-it-really-be that the ATG treatment Hannah got in June is maybe starting to work. We still have to "wait & see" ... we still have to go to Seattle & continue on with plans for a BMT because the rest of her blood counts may not follow into the normal range.

But for today, this is the first really good news we have had about Hannah's vacationing bone marrow since all of this started in December. Yes, December. It has really been that long!

Just wanted to share the GREAT NEWS from our last day of clinic visit at NIH for this summer. We love the entire team here & will miss our nurses & doctors. Thank you NIH 1NW for all your love & care!!!!!

Thursday, August 27, 2009

Saturday Night Arrival

I guess it would help if I mentioned that we land on SATURDAY night -- 6:30pm Southwest flight #1181. You are welcome to join us at Ontario airport & make a scene for miss Hannah. She has been through so much & a little chaos at the airport will go a long way! :-)

We are in Philly tonight & leaving to drive to Maryland at 6am to make it to the NIH clinic by 9ish. After her clinic appointment / transfusions, we are going to visit the Lincoln Memorial. It is the last thing on the long list of DC sights that Hannah wanted to see while we were out here.

Then one last sleep at the Children's Inn & GOING HOME!!!!!!

Thank you so much to Pam in TN for offering dinner at your brother's restaurant in Seattle! How generous!!!

All God's best from my parent's house --

Wednesday, August 26, 2009

Airport Arrival

We are still having a great time in NYC!!!! Hannah did some more shopping today at Toys R Us & rode the Ferris wheel in the middle of the toy store ... another awesome day of Make A Wish fun.

We are here in the hotel watching Food Network but I just wanted to post real quick about our arrival this coming weekend. I have a request -- whoever has time & wants to come greet Hannah at the airport, please come & surprise her with signs & your love! It has been a L-O-N-G summer & I know it would mean a lot for her to see friends at the airport. We have been gone since June 11th & before that she was in the hospital for a long time!! We land at 6:35pm on Southwest Airlines at Ontario airport (#1181 from BWI via Las Vegas).

I can't say that we will be able to visit for long at the airport but your presence at the airport will mean a lot to our hearts!!! Once we are home I am locking the doors & turning off the phones - no offense to anyone but we will only have about 2 days together at home before Jim & I have to go to Seattle for talks with the doctors about Hannah's possible Bone Marrow Transplant.

Thank you everyone for your comments & love .... I am forever grateful for the kindness of everyone that encourages us on this road of Hannah's illness.

Tuesday, August 25, 2009

Make-A-Wish for Hannah

There are no words for the emotions of this trip. I have to just keep a lid on it or I would be a bawling mess .... it is so wonderful for Hannah to be able to have this Wish Trip.

We had a great limo ride -- with blueberry muffins to eat & chocolate milk for Hannah in a champagne glass. We are staying at the Hilton Times Square so we are right in the heart of all things bright! :-)

Today was Hannah's official "wish day" - Make A Wish provided a limo for the entire day & we had a volunteer, Susan, from Make A Wish that patiently spent the entire day with us going from place to place as Hannah shopped & shopped & shopped. We started off the day at American Girl Place & ended at Build A Bear. Hannah loved it all but her absolute favorite part was Build A Bear. Thank you to Annette at AGP for being Hannah's personal shoppper (and Robin for coordinating!) & for Emily at Build A Bear for spending so much time with us & treating Hannah like the princess that she is!!

Most of Hannah's purchases are being shipped home (yeah!). She picked out a bunch of stuff but I think she got 4 dolls at American Girl Place & 5 stuffed animals at Build A Bear. Yes, it has been a big time over the top shopping spree for my girl!!!

Truly, there just are no words. How do you thank the people that have made this day possible? To see the joy on Hannah's face ... no, she doesn't "need" any dolls or bears .. no the dolls & bears are not going to cure her .... but to see the happiness was just PRICELESS. After all she has been through & all she continues to go through with her illness, it was nothing short of a miracle to see her dancing around the stores & living it up in NYC!

I am so grateful for this trip for Hannah. Although I am beyond ready to be back at home, Hannah needs this trip right now. It has been a rough 9 months and I don't know how many more months are ahead of health issues. Lord willing, a cure is just around the corner. Lord willing, her little bone marrow finds Hannah again & remembers what a happy home it once had in her body. I am done with this illness... but not sure if this illness is done with us.

I am missing my Lily like crazy & really at the end, end, end, end, end of my ability to be away from her. It just feels unbearable right now but I have to keep telling myself over & over that this is a season. Just a season.

The joy of this trip is such an emotional high for Hannah -- I think she is going to be exhausted from all the happiness. What a great reason to be exhausted!!!

Last but not least ... here is a little clip of video from in front of my parents house. We had told Hannah that Grandpa was bringing around the car so we could put our luggage in it & get to the bus for the trip to NYC .... check out how surprised Hannah is once she is INSIDE the limo & we tell her the limo is taking us all the way to NYC. Adorable!

Sunday, August 23, 2009

Date with Grandpa

Growing up, my dad took each of my sisters & I on some very special dinner dates with him. Grandpa continued the tradition tonight by dressing up & taking Hannah out for a delicious Italian meal.

Hannah got all ready with freshly painted nails, curled hair & a touch of make-up (I know... but why not!?). When she came downstairs & saw my dad she said "Grandpa!!" and went running to him as if she hadn't seen him in years. A precious moment. Grandpa gave her a beautiful gold necklace with a rose on it ... a special gift for miss Hannah Rose!!

The alarm is set & a stretch limo (thank you dad & mom!!!) will be here at 10am to take us to NYC. Hannah thinks we are taking the bus to NYC. She is going to be SO surprised when she sees how we are getting to Manhattan!

Saturday, August 22, 2009

Hannah's Hoedown

Here is Hannah in her debut Hoedown video ...

Thanks, Sarah, for editing & putting this up on YouTube!

Nothing serious ... just my girl having some fun here in PA with cousin Sarah!! I know Lily will love watching .. enjoy!

Friday, August 21, 2009


I have been ready for a new look to my blog for a long time ..isn't this a fresh clean look? I love it!! Goodbye old blog!

I am here in Bethesda, MD with Hannah in the clinic (day hospital) for her to get platelets & red blood cells. Her port accessing went awesome today .. no problems at all!!! Right now Hannah is sound asleep from the Benadryl that she gets as a pre-medication to the transfusions.

Her numbers have not improved to the point where she is transfusion-independent. We are still waiting to see if the treatment will work but otherwise it looks like she is headed for a Bone Marrow Transplant probably towards the end of September. Jim & I are going to check out the hospital facility in Seattle on September 1 - 3.

Hannah is SO excited for her Make-A-Wish this coming week in NYC!! The organization is graciously arranging a ridiculously extravagant shopping spree for Hannah on Tuesday. I think it will take her hours & hours & hours to figure out how she wants to spend the money ... how fun for her after all that she has been through!! She also wanted my mom to come so it is going to be me, Jim (he is flying in from CA to meet us in NYC) & Grandma with Hannah. It will be a fun few days!

Lily is not coming because let's face it, NYC for an almost 2 year old: not so super fun. I am so ready to get home to my little Lily!! Truly, I am counting the nights until I rock that baby to sleep!!! I can't think about it all too much or I would just be sitting on the floor in a bath of tears.

Hope everyone is having a good end of summer or beginning of school! I know Hannah's friends are already back in school -- we miss you guys!

All God's best,