Wednesday, September 30, 2009

Proper Etiquette?

So my main question last night: "What is proper etiquette when your daughter throws up in the hospital room with you & the nurse both there to see it happen - Who does the clean up?"

I was not feeling very much like cleaning up the floor ... but generous me did offer to call Housekeeping ... aren't I a big help?!

Thank you, Sweet Diana, you win the award last night for Nurse of the Year ... thank you!!!!!!!!!!!! You'd think I'd be ashamed of myself but I know better. I have certainly cleaned up many messes :-)

Hannah is doing better today -- she has really perked up & has not had a fever all day! Today she had a visit from Claudia (child life specialist), Miss Eileen (on site teacher) & the Children's Pastor from our church, Miss Lois. Hannah was pleasant for each visit & seemed to really enjoy the day. Thank you, Lois, for making the drive to Fontana -- Hannah loved seeing you & SOOO enjoyed the movie you left with her!

The doctor says she will come home tomorrow if she remains fever-free. Jim is sleeping over tonight with Hannah & I am home with Lily for the night.

It is nice to be home - I just made Hannah's favorite: homemade mash potatoes. They are here waiting for her to get back!! Hopefully tomorrow we will all be back at home!!

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"The steadfast of mind, Thou wilt keep in perfect peace, because he trusts in Thee. Trust in the Lord forever, for in God the Lord, we have an everlasting Rock." Isaiah 26:3-4

Tuesday, September 29, 2009

Quick Update

Hannah's temp has been under 100 most of the day. She is on 2 broad spectrum anti-biotics to cover about 98% of things that she could potentially have. Our wonderful Kaiser doctor, Dr. Horvath, is out of town so I called back East & talked to our awesome doc at NIH, Dr. Scheinberg. Dr. Scheinberg agreed with what the doc here is doing. That made me feel much more comfortable as I am not a huge fan of the doctor that is covering Hannah's case this week here at Kaiser.

What I know: God is faithful. He is the same yesterday, today & forever. Thank you, Lord, that even though I do not understand Your plan for Hannah's illness, I can continue to trust You with all my heart.

Pray for the anti-biotics to work & for Hannah to perk up a bit. She has not had much of an appetite today & just got sick to her tummy. Not sure all of what is going on ..

We are tired & going to bed. Just wanted to post a quick update.

Thanks for praying & for love & care ..

Not So Fast ...

Well, so much for plans on getting out of here today.

Hannah has been getting morphine for pain (to be expected -- I guess last evening she was still enjoying the effects of drugs from the Operating Room so she wasn't feeling any of the pain from the surgery).

Since we are in the hospital, why not add a fever to the program? Hannah's nurse felt that Hannah was warm in the middle of the night. No, it isn't hot in our room .. Hannah's temperature is around 101. We are getting blood cultures taken & starting an IV anti-biotic.

What I know for sure: You can never really plan for anything with Aplastic Anemia.

Hannah is laying in bed right now playing with her port .. she says we could make it into a yo-yo :-) I will post a picture of the port once I have the cord to hook up my camera to my laptop (left that at home .. didn't think we'd be here long!).

We will probably be in here at least a few days to get blood cultures back, etc ..

This is what I have been dreading as we wait to go to transplant: a fever! Please just pray for miss Hannah to be healed & for this fever to quickly go away!

Monday, September 28, 2009

Port in a Jar

Hannah's port is in a jar!!! The surgery went perfect - no problems at all. The pediatric surgeon is wonderful & kind -- we love him!

We are back in Hannah's room on the peds unit. She is pain-free, resting & watching The Suite Life on Disney.

We will probably spend the night just to make sure she remains pain free & then I can get trained on flushing her new line (a new thing since I did not have to flush her port).

Thank you everyone for prayers & for messages (Thank you, Lois ... your verse was such an encouragement to my heart!).

Much love from the room with my girl - she looks great! :-)

Leaving to go to OR

We are in our room here on the peds unit ... actually we are in the room that Daniel spent so many months in. Gosh, it is hard to believe our special guy isn't here anymore. We sure miss him!!!!

We are waiting for our ride to take Hannah up to the Operating Room (not a limo .. bummer!). Pray for Dr. Sydorak as he does the surgery & for no complications ...

I will update after we get back to our room.

God's mercies are truly new every morning!!! Thank you, God!!

Sunday, September 27, 2009

What to Say?

Hannah had a HORRIBLE morning / afternoon with nurses trying to get an IV going for her transfusions. Five pokes & even one try at her port. Horrible. Thank you, Lord, finally an IV got started & Hannah will get platelets & red blood cells tonight.

Yesterday I spent part of the day in Hollywood with Hannah & some of her friends at a private Selena Gomez concert. Hannah had been invited by Selena's step-father (thank you, Brian!) after Hannah performed a Selena Gomez song ("Falling Down") for the audience at the taping of Wizards of Waverly Place last Tuesday. I have lots of pictures from the event yesterday but none with Hannah.

Let's just say that Hannah's friends had a great time at the private concert but Hannah had a melt-down. No, really. I mean: M-E-L-T D-O-W-N. I don't know what is really going on .. well, maybe I do? 9+ months of hospitals & plans for a BMT. I guess I can't blame her for having times of just being out of sorts but it is so rough. I held it together at the event (even though I was ready to toss her down Sunset Blvd).

Let me just say, I really needed today with just Lily & a day away from all things Hannah. I know, terrible to say but I am just a mom like the rest that has moments (or days) of getting fed up! Believe me, if you had been there yesterday, you'd be feeling the same way too!! :-)

Jim has been with Hannah at the hospital all day & is spending the night there tonight.

Lily & I had such a nice day together. Now she is at Kim's (aka "Auntie Mom") so I can get to the hospital in the morning so Jim can get working.

What a joy that little Lily is. My goodness, she is a treasure & even though I was emotionally drained today she brings my heart SUCH HAPPINESS. Thank you, Lord!

Here is another China video from our trip one year ago.

This video is of Lily & a sweet friend, Kay Linn, that we met in China. Her parents, Donnie & Bernie, are from Ireland & they adopted her the same day we adopted Lily (but they had been fostering her in Ireland for 6 years prior). Such a sweet family -- hi guys, if you are reading this!




Here is a little video of my lunch today with Lily at King's Fish House -- she makes my heart so happy!!!

Saturday, September 26, 2009

Port Getting Removed!

I am very tired so I will keep this short ...

Hannah checks into Kaiser Fontana tomorrow morning to get possible transfusions & then have surgery on Monday afternoon for her port to be removed & a different line placed (either a PICC line or a Hickman ... not sure until tomorrow). Hopefully our trip to Kaiser will be just over 24 hours & then back home!

Just pray, please. Pray all would go well with her IV being done tomorrow (since her port is not being accessed anymore) & that the surgery would go smoothly on Monday.

Hannah's port has caused such major issues that it will be a relief to be done with it. I want to see that thing -- Hannah is going to request it being put in a jar. Won't that look great on the shelf in her room? Not!

Thanks for all the love & support --

Debbie

Friday, September 25, 2009

Time Away


The girls & I did a get-a-way in the Palm Springs area for the past 2 nights. We stayed with my dear friend from college, Deb. What a nice wonderful relaxing time ... thank you, Deb & family!!!! It was so great to also see two other friends -- Brig & Rozanne. Love you guys & so incredibly thankful for all of your love, encouragement, support & prayers ... especially these past 9 months! I wish there had been more time to see everyone that I know & love in the area.

I used to go on trips all the time with Hannah when she was little - I realized today that this is the first "mother daugther" trip for Lily. My goodness, this year has been a whirlwind! The past 3 days were a few of the best days of the past year ... such a great time with both of my daughters!!!

Here are some more China videos ... mostly for my family to see.. no pressure for anyone to sit & watch my "home movies"! This was one year ago in China - wow!





Wednesday, September 23, 2009

More China ...

Here are two videos from our time in China with Lily ... enjoy!





Tuesday, September 22, 2009

Fun Time at Wizards of Waverly Place

We had such a nice afternoon / evening at the taping of Wizards of Waverly Place ... thank you, again, Tracey for coordinating such a fun time with you & Taylor!! Hannah had a blast checking out the set, watching the taping of the show, singing for the audience (yes, she did!!!) & meeting the cast.

Here are some of the pics ....
















Monday, September 21, 2009

One Year Ago This Week ...

With the time change, tonight will be one year since our dreams came true of meeting our sweet Lily. Our trip to China was incredible & I'd go back in a minute if I could. Each day this week I will try to post some videos from our time in China with miss Lily Sha Sha (Hannah still calls her "Sha Sha" all the time!). She is a dream...thank you, Lord, for the joy & privilege of having daughter #2!!!

As an update on Hannah: I talked to our Bone Marrow Transplant Search Coordinator at Seattle Children's Hospital & they have already located 3 potential donors that are 10 out of 10 matches to Hannah's HLA typing. All 3 potential donors are internationals ... Seattle is now contacting them to see if they are still eligible & available to be a donor for Hannah. We need to line up one donor & one back-up donor. Lord willing, the process will move quickly & Hannah will stay infection-free until transplant. Although we are still holding out hope for her treatment from June to work, all of the doctors are pretty sure it won't work & that she will need a BMT.

I am so grateful for the joy (and challenge!) of being a mom to two beautiful daughters!!

All God's best from our home --









Sunday, September 20, 2009

Beach Pictures


I took the girls to the beach tonight to get pictures of them at sunset .. I wanted to get some nice pics of the girls at the beach. Well, it did not work out the way I had hoped. It was very cold (compared to 92 at our house) and Lily had just woken up from 45 minutes of sleeping in the car. It was too cold to even put Lily down -- I had her wrapped in a big towel almost the entire time!

So much for adorable beach pictures of the girls together! We did get these pictures -- nothing amazing but a fun time of GNO!









Saturday, September 19, 2009

The Joy of the Normal






Lily is down for a nap. Dad & Hannah are out on an errand. Dishwasher is running, laundry is going, & I just cleaned the floor ...aaaah, the joy of the normal!!!

Hannah & I did a mini-photo session with Lily yesterday. Here are a few of the pictures we got. So cute! Hannah picked out a ton of outfits for Lily to change into but Lily was not interested so we just took pictures in this one dress (thank you, Mia!).

Plus, there is one picture from today after Lily & Hannah had some fun playing in the make-up!!!!

No matter what you are doing today .. give thanks! There is joy in even the most mundane normal tasks :-)

All God's best from HOME --


PS -- A huge thank you to Connie & Tito in Texas ... you guys have shown some serious big time Texas lovin' to Hannah over all these months ... I am so grateful!!!

Thursday, September 17, 2009

2 Years Ago Today


Two years ago today our precious Lily was found in the town of Miluo in the Hunan Province of China. There were things found with Lily that make me know that her birth mother loved her & wanted her to be cared for. I cannot fathom the agony that her birth mother felt as she was leaving Lily. China certainly does not make it easy - they have laws that prohibit more than one child, laws that prohibit openly placing your child for adoption and a culture that traditionally has preferred boys over girls.

The above picture is a copy of the "finding ad" that was placed in the newspaper, The Hunan Daily on December 12, 2007. This ad was placed by the government in search of Lily's family. I am so thankful that the Lord found us to be worthy to be her family -- she is a prize & I am forever grateful for true privilege of being her mother. She is the most amazing blessing to our family & God planned her to join us in just His perfect timing - even though I struggled with all the waiting. God knew & He uses that faith journey each day as I struggle with Hannah's illness & His plan for her life.

Tuesday (Lily's birthday), Hannah & I spent at the clinic & at the hospital. With the issues with Hannah's port she wanted to get her transfusions through an IV instead of through her port. I don't blame her!! Getting an IV started sounds better to her than having her port accessed. The hospital is the only place that will do an IV so she & I slept over at the hospital on Tuesday night for her to get transfusions. Around 10 pm the nurse told me Hannah's temperature was 100.6 & I almost had a heart attack!!!!! I just couldn't believe it - the nurse & I removed a few blankets -- later her temp was back in the normal range -- THANK YOU, LORD!!!!!!! We both slept like rocks in the hospital room and I had a great opportunity to catch up with my dear friend, Virginia (Chance's Mom). They are in the hospital for Chance to get anti-biotics & to have his central line removed since he is done with chemo, bone marrow transplant & radiation ... Chance looks great & it was the first time we saw Chance with hair ... he looked wonderful!!!

We missed being with Lily on her actual birthday (can you imagine?!) because we were in the hospital on Tuesday night. I just roll with the plan - why fight what I cannot control, right?! So glad we all celebrated together on Sunday night. We are all back at home together tonight & Lily is feeling better. Thank you Slazas' for loving on your/our girl!!!! She talks about you all the time .. it is sooooo cute!!!

Monday, September 14, 2009

One of Those Days ...

Before I get into the day with Hannah ... Lily woke up a bit sick -- poor sweet baby! Thank you, "Auntie-Mom" & family for taking such amazing care of miss Lily so Hannah doesn't get whatever she has! So glad we did some birthday celebrating last night but very sad she isn't here tonight!

Hannah's port accessing did NOT go well. We ended up not getting her port accessed because she got poked a number of times & it still wouldn't work. It is so sad that a port that is supposed to make things easier for her causes so much anxiety & pain for her (at times). We left the clinic & went down to the lab (with lots of coughing people !?!?!?) and had Hannah's blood drawn from her arm.

Her blood numbers were low so blood & platelets are ordered from the blood bank & we are going back to the clinic in the morning for her to get both. Oh joy .... another morning of setting the alarm & port accessing.

Hannah is such a trouper but let me just say SHE IS DONE WITH THE CRAZY PORT THAT DOESN'T ALWAYS WORK! I guess her port is in a funny spot (center of her chest) and it is very deep & sometimes turns a bit. I know it is very stressful for the nurses - so my heart goes out to them as they try to get it to work. Today my heart just broke for Hannah thinking "WHY!?!?!?!" Why can't her port just work like a charm? Why does Hannah have to go through all of this? It just feels like "emotional salt on the wound" of this whole Aplastic Anemia thing.

Please pray that the port accessing would go well tomorrow & Hannah would have a smooth day at the clinic.

For any of you that don't know what a "port access" is, and I didn't before Hannah was sick, here is Hannah doing a demonstration of a port access while we were at the NIH. Holly, our wonderful child life therapist at NIH video taped Hannah showing how a port is accessed. This is what she goes through each time her port is accessed.

Let the Partying Begin!














It was a great day going to church with Lily -- thank you, Pastor Glenn, for an awesome sermon on living by faith!! I was so encouraged & it was wonderful to be there with Lily. Hannah & I made the cake together last night and then she did all the decorating. I love it!

Tonight we had dinner, cake & presents -- too much Chinese food to mention ... if you are hungry, please stop by!!

Hannah & I go to the doctor / clinic early in the morning to see how her numbers are holding ... then we go to Orange County to pick up my car at the shop. I have been driving a rental since I broke down on the freeway on Friday....just thankful for a set of wheels :-)
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"Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us." -- Hebrews 12:1

Saturday, September 12, 2009

This & That & A Bit of Braggin ...

Plate by Sarah K, my 15 year old niece ... look at the picture below that she painted on the plate!!!


Pictures from my day today with miss Lily Sha Sha ... she is such a sweetie pie!!!




First, the braggin': My 15 year old niece, Sarah, is an artist extraordinaire!! Look at this beautiful plate that she made for us! Isn't this amazing!! She painted a picture of my girls from a photo that I took back in May when we were home from the hospital. This is a forever reminder of my first blog, Lilyswait.blogspot.com -- look at the details & the Bible verse from the header of the blog .. amazing! Thank you, Sarah -- Your gift has a very prominent place in the kitchen ... I love it so much ... of course, I love you more!!!!!!!!!!!!!!!!!!!!

This & That:

* Hannah has had 2 play dates in the past 2 days -- thank you Alyssa & Spangle girls!!! Hannah LOVED being with some of her friends again. What a treat for her to spend time with some of her dearest friends & just "be a normal kid"!

* Hannah got invited to attend a taping of Wizards of Waverly Place -- thank you, Tracey V.!!!! We are set to go next week (as long as we are not in a hospital). Hannah & I will be going with my dear friend Tracey & her precious daughter, Taylor. Tracey has been such a constant support to me through Hannah's illness with cards, packages, texts & phone calls. Thank you, Trace!!!! I told Hannah tonight about the invitation to Wizards & she is SUPER EXCITED!!!

* Cards have been arriving daily from Girl Scout leaders all over the country wishing Hannah the best & sending her a "friendship knot". Thank you, Wendy, for tipping off the G. Scouts ... Hannah loves the mail!! :-)

* The kindness of SO MANY touches my heart & continues to encourage me as I walk this road. I couldn't have made it this far without knowing that so many people are praying for us & supporting us. Every card & every note means so much! Truly.

* Last but very much not least -- we are headed into some big time celebrations for miss Lily Sha Hope!! She will be 2 this coming Tuesday & then next Tuesday is the 1 year anniversary of Adoption Day! A lot to be celebrating about in these next several weeks. I am so grateful for this beautiful baby. There truly are no words. She & I spent the day together while Jim was at a meeting & Hannah was off on a play date. I posted some adorable pics from our time together today ... she is my love bug & it was so nice to have some time today with just her. Thank you, Lord for this most precious baby!!


All God's best from HOME --

Not An Average Day

I got an invitation from Make-A-Wish to attend an event for Caregivers (thank you, Make-A-Wish people!!). At first when they called I thought they were asking me to come & help with the event - which I would have loved to do but they were calling to invite me as a guest - since I guess, yes, I am a "caregiver". Hello? - sometimes I am so slow! The event was I-N-C-R-E-D-I-B-L-E. It was non-stop pampering, delicious food, tea, wine, gift bags, etc. Unbelievable. The event was at the St. Regis Hotel Monarch Bay ...think: nicest resort hotel ever built. I got a facial .. incredible! And then a make-up artist did my make up & gave me some tips on make up for "hospital life".. ha, ha! I met wonderful women & came home inspired to participate one day as a volunteer for something like this once I am through with this time of "caregiving".

While I was on the 5 Freeway to get to the event, my car broke down. Yikes. Not fun to cross 5 lanes of traffic to get to the side of the road but I made it. I only had to wait about 1/2 hour for a tow truck. And here I go again ... you know I need time alone when I enjoy sitting in my car on the side of the road waiting for the tow truck because you are just alone. Alone. A foreign concept when living in a hospital for stretches of time 24/7.

It was a wonderful day to be pampered & taken care of ... a great day to allow myself to process some of what has happened to our lives over the past 9 months. I sat in the hot tub alone for hours after the sun set & just cried over all that has transpired this year. 

Truly, I am so grateful for the organization that put on this event . It was definitely not an average day!


Wednesday, September 9, 2009

Tea for You ... Tea for Me





No kidding that Lily played for 2 hours today with this tea set & the other fake food items .... it was adorable how much Lily enjoyed these new things from Hannah's Make-A-Wish shopping spree. Hannah's last box from NY arrived yesterday so we spent a long time this morning opening everything up (hello .. why does everything have to be practically duck taped to a box?!?). It has been like Christmas here 3 times in the past week or so ... a huge box from American Girl Place, a huge box from Build a Bear & finally a box from Toys R Us. Wow .. there is no lack of anything to play with in our house (not like there was!?!).

Yesterday I took Hannah to the clinic -- it was very busy so it took some time to get in & out but Hannah ended up not needing any blood or platelets. I was very surprised because she has been very tired & seems pale. Maybe it is just all the months of low hemoglobin even with transfusions. Who knows? We go back to the clinic on Monday for Hannah's numbers to get checked & most likely get transfusions.

Lily came with us to the clinic so I took the opportunity of being at the doctor's office to finally get some more of her vaccines. I am behind on her vaccination schedule ... but who can blame me ... I have been a bit busy! Needless to say, Lily was not happy about the 3 shots in her legs ... poor baby!!!! She has had a fever since the middle of the night but has been playing happily today & resting, thanks to Tylenol. Truly she is just the best baby ever .. I don't know how to explain it except to say if you were around her, you'd just get it. There is no easier baby. Thank you, Lord!!!

I am just happy we are all still home & praying we can remain here until we have to go to Seattle for bone marrow transplant. It is just so great to be home ... I have organized & unpacked every last thing that was in my suitcases from the East Coast ... yeah!!!!

All God's best from HOME --

Saturday, September 5, 2009

At Home with Lily

Miss Lily Sha Sha ... constant entertainment!

We are having such a nice time JUST ALL BEING HOME. We have done nothing but be home & I have gone with Lily to do a few things of normal: grocery store, Walmart & Costco. Hannah hasn't left the house as she has been tired & not up for much...... plus, her numbers are low so better to just be home.

Lily is doing so great & is practically potty training herself. Really. Kim said she has been ready for about a month & she wasn't kidding!!!! Lily had a big morning on the potty with Hannah cheering her own to "push it out". A very happy moment to see a significant brown something in the potty when she got up!!! Just look at her adorable face!!!

Lily & I went to Walmart to find underwear in her size. Not easy since she still fits in size 12 months!! I bought the smallest they had (2t) ... Kim recommended getting underwear in the doll section if the 2Ts are too big :-)

A few pe0ple have asked about getting into the bone marrow registry. Just follow this link to register: http://www.marrow.org/JOIN/Join_Now/join_now.html
There are NO NEEDLES involved to have your name added to the bone marrow registry. Your bone marrow could truly save some one's life so please register today in honor of Hannah!

Hannah' s donor could come from anywhere in the world. It will just depends on who is in the registry & who is the best match for her.

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"To everything there is a season, A time for every purpose under heaven." Ecclesiastes 3:1

Wednesday, September 2, 2009

Moving Forward

Jim & I met with a doctor today that is part of the Bone Marrow Transplant team at SCCA (Seattle Cancer Center Alliance). We are now moving forward with the search for the best possible donor for Hannah to have a Bone Marrow Transplant. Since Hannah is a Caucasian American there will probably be a few "10 out of 10 donors" to choose from. That is huge!!!!!! The best possible donor needs to be located & contacted to see if they will agree to anonymously give some of their bone marrow to save Hannah's life.

There are too many potential complications to list. Hair loss is likely from chemotherapy. Survival rate is 75%.

If all goes well, the BMT is a cure for Hannah's disease. I am thankful for the hope of a cure & the hope that Hannah could go on to have a normal life after all of this is over. The SCCA has done 27 pediatric Aplastic Anemia unrelated donor bone marrow transplants (they are the center that pioneered BMT in the early 70's & have done over 10,000 bone marrow transplants since that time). To know that they have only done 27 transplants like Hannah's tells you how rare it is for a child to have Aplastic Anemia.

We will probably put Hannah in a clinical trial that uses a lower dose of pre-transplant chemotherapy (100mg / kg of Cytoxan). She will also receive total body radiation (200 centigrade / TBI) prior to transplant. Her transplant will be done at Seattle Children's Hospital and we will most likely have to be in the Seattle area for about 4 months.

As of right now, we are about 2 months out from transplant ... unless her bone marrow comes back in the mean time. It is still not too late --- but the doctor today was not very hopeful that she will avoid a BMT.

It is just unreal to me that we sat across the table from a transplant doctor today that had a huge file in front of him with Hannah's name & birth date printed on the front of the file. I know I have said it a million times but this whole thing is just surreal. Maybe I would feel differently if Hannah had been sick since birth but she spent 7 years & 2 weeks as the picture of health.

The doctor wished us luck for Hannah to stay healthy while we are waiting for her donor to be located. Oh my.

I am just hoping for days & days in my pj's at home ...or at Kim's. I have no energy for anything except sitting & doing a lot of nothing. If we can stay out of the hospital until her transplant I think perhaps I can gather myself for a "second wind" of more hospital stays in Seattle. I know a BMT will make the past 9 months of hospital admissions look like a cake walk. Hard to imagine but I'd be kidding myself to think that a BMT will not be a really rough road for Hannah.

Pray for the best possible donor to be found & that they would be open to donating for Hannah.
Pray for Hannah to remain her happy little self in the midst of all that she is going through.
And, pray that her bone marrow would just come back & we will not need to come to Seattle after all for a BMT.

Thank you ... I am so grateful for so many that encourage me & pray for us during this time!

Love on your kids tonight & thank God for their health!!!!

Tuesday, September 1, 2009

Just Trusting

Jim & I are safe & sound in Seattle .... easy flight & no issues.

Hannah went back to the clinic today at Kaiser Fontana with Aunt Kim & unfortunately her white blood cell count is back in the "low" range (2.9).

Who knows what is going on ... maybe she is fighting an infection so that is why her wbc is back down again .. but who really knows.

I just have to keep trusting God. I was really down when Kim sent me the text with Hannah's blood counts. I mean, really... can the Aplastic Anemia roller coaster please come to an end??!?! I guess it is good that we know her low blood counts today before our meeting tomorrow with the bone marrow team doctors -- otherwise, maybe I wouldn't be taking all of this too seriously. I was (and am!!) just so so so ready for all of this to be over. I am just so ready to go back to life at home with two precious daughters, a dog named Joy & a husband that takes such good care of his girls.

Maybe we are not at the finish line just yet... God knows & I will continue to trust Him.

He knows. He knows. He knows. Thank you, Lord, that you know .. and that no matter how hard this road is, I can continue to trust You in every way.

Last Pictures from East Coast





So I have my laptop back .. let the uploading begin :-)! I have so many pictures that never got uploaded from our cameras over these past 5+ weeks without a computer. I am so excited to get going again on my digital scrapbooking. Memories were made & I love to document everything .... the good & the not-so-good.

Here are pictures from our final night at NIH in Maryland. Hannah really, really, really wanted to see the Lincoln Memorial ... so off we went in the rain to see the final thing on our "list to do" while in DC.

After seeing the Lincoln Memorial Hannah wanted to go out for Mexican (surprise, right!?) ... we couldn't find the place we were looking for but we found The Melting Pot (Hannah loved the idea of getting fondue). At first the restaurant was not going to seat us because we did not have a reservation .... so I explained our situation: where do I start? 141 days in the hospital, just went on make a wish, about to get on a plane to go home for the first time in 10 weeks & her white blood cell count is in the normal range for the first time in 9 months. After hearing my bit, the host staff was very kind & got us a great table - thank you Melting Pot in DC!!! My mom, Hannah & I had a feast & celebrated the joy of it all!!!!! During dinner the manager brought over a teddy bear for Hannah & a balloon that said "Congratulations". I think it hit me some time during that meal (probably when I went to the bathroom and had a minute alone) that Hannah's white blood cell count is in the normal range & we might finally be at the beginning of the end of this road. My mom kept crying ... total tears of joy & Hannah was telling her to stop "blubbering" ... it was funny!! I cried a lot on the flight home ... just sooo happy!

Lily was very reserved at first in the airport but by the time we were driving home she was laughing for us with her hearty chuckle that cracks us all up. We have had a great 2 days together ... so unreal to all be home! Lily is the sweetest, smartest baby ever ... a total joy & hilarious!

The girls are over at Kim's tonight so Jim & I can get to the airport in the morning. I can't believe we are going on a trip right now. I just unpacked 4 suitcases & now I need to re-pack a mini-bag for Seattle. I am just praying that this trip is all for nothing & we will never need to take Hannah to Seattle for a bone marrow transplant.

Whatever the road ahead is ... God knows & I can continue to trust Him with all my heart. He has given me a renewed hope for Hannah's healing here ... thank you, Lord!!! I am so grateful to know God's unconditional love & care each day -- particularly through these last 9 months. He is my rock & it is only by His grace that I am making it through each day.

Hannah goes back to the clinic at Kaiser tomorrow with Aunt Kim for platelets -- please pray for a good port accessing & for Hannah's bone marrow to continue to come back. Kim is the only person Hannah will allow to take her to the clinic besides me....truly a second Mommy.

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"Be anxious for nothing, but in prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, shall guard your hearts & minds in Christ Jesus." - Philippians 4:5-7