Hannah Sound Asleep with No Problem Tonight

So I talked to the dr. this morning & he increased Hannah's Benadryl dose for bedtime - that was all Hannah needed in the first place!! She'd had an increased dose of Benadryl once before & it worked like a charm for helping her sleep. Why he didn't just change the order yesterday when I asked him twice is just beyond me. It is not like I was asking for a lethal dose of Benadryl for my daughter!?!?!

UG!!!!

OK --- I just had to vent.

Done.

Today -- Hannah's numbers are holding around where they have been (still very low but better than in December!). She is about to get red blood cells tonight because her hemaglobin is around 7.8.

Today she had "art class" which actually turned into a Webkinz / tap dance / singing / drawing / crafting / art class. I truly don't care what kind of class it is ... it just gives me the freedom to leave & know that she is in great hands. Thank you, Erika Lazo, for the G-R-E-A-T time Hannah had with you! Nothing made my heart happier today than hearing her ask to hold your hand as she was playing Webkinz & singing her little heart out to the Anastasia soundtrack. Really ... do you think she likes you!?!!!! So cute! Thank you for loving on Hannah & being so much fun for her!!!!

Jim & I met for dinner at one of our favorite places -- so nice & it was just the two of us. Lily was on a day long field trip with Aunt Kim & family, so she wasn't near by to join us. It worked out nice for Jim & I to just have some time together .. even if we cried through half of the meal over everything that is going on.

Hannah got an AWESOME package from Vanessa Hudgens -- see the photos here!!! Thank you to my friend Tracey Valdez for talking with her friend Jennifer who talked to Vanessa's mom. A SAK purse also arrived but isn't in the pictures. Thank you, Vanessa & her mom!!! Thank you, Jennifer, for calling to ask on Hannah's behalf!! You made Hannah's day & the signed stuff is so cool! Really .. thanks for thinking of my little girl here in Fontana!!

Hannah had her needle changed this evening. It went well -- but who wouldn't be scared to have a 1.25" needle inserted into their chest -- no matter how many times it's been done. Thanks to nurse Jacque for doing a stellar job & for giving Hannah such a nice treat for cooperating so well :-)!

Hannah had a shower, did some tap dancing, watched American Idol and IS NOW SOUND ASLEEP!!!!!!!!!!!! Music, or lack there of, to my ears :-)!

Tonight I am thankful for this promise from the book of Isaiah --

"He gives strength to the weary, And to him who lacks might He increases power. Though youths grow weary and tired, And vigorous young men stumble badly. Yet those who wait for the LORD will gain new strength; They will mount up with wings like eagles, They will run and not get tired, They will walk and not become weary." Isaiah 40:29-31

Thank you, Lord!!!

Adavant / Benadryl Reaction

Hannah is still awake after being given both medications around 10pm!?! I can't post much right now because I have spent the past SEVERAL hours with a screaming, crying Hannah. I had requested this morning to have her nighttime Benadryl dose increased. The doctor on duty wouldn't do it but instead added Adavant to her nighttime medicines. Let's just say, the "Adavant / Benadryl" completely backfired! Hannah did not fall asleep but rather fell apart.

For some reason, both medicines (plus, morphine for her pain) put her into a complete emotional meltdown. She was crying for me to put in one movie - I'd put it in & two minutes later she'd be crying for me to put in another movie. At one point she was crying because she was "bored" -- even though she was surrounded by crayons, paper, a game & a movie in the DVD player. She was just beside herself! I talked to the nurses & the resident to give her something to reverse the Adavant but I guess it just has to work itself out of her system.

Needless to say, we won't be doing that "cocktail of medications" again!!

We did have a great day before all of this .. visits from some of our friends. Thanks, Jason, Brenda & Suzanne for making the trip to Fontana to spend time with Hannah! Hannah loved visiting with you guys! She is in heaven with her new Webkinz, thanks Suz -- a new thing to add to her "very full & busy" agenda here at Kaiser Fontana. Also, she loved having her hair braided & grading 4th grade papers - thanks Jason / Brenda!! And Brian / Sunja -- I forgot to mention it the other day but thanks for the haircut for Hannah & all the nice gifts. She ADORES the lamb that plays "Jesus loves Me".

Really, I shouldn't try to thank people here because I know for every person I thank, I leave out 20. Just know, EVERYTHING that EVERYONE has done for us is SOOO APPRECIATED!!! Thank you!!

Tomorrow is 3 weeks since Hannah has had anything to eat or drink. Pray she will hang in there as there is at least another week to 3 weeks to go with no food / drink.

Goodnight from Room #1303 .. tomorrow I will post more.

For now, I feel like I got run over by a Zamboni and I just want to eat some Coco Krispies once Hannah is asleep!!

Is that really too much to ask?! :-)

DAY #72

Well, Hannah & I slept until noon. I really couldn't believe we had slept that late. We were up & down for potty breaks because of all the crazy amount of fluids that she gets through her IV but overall it was a great night of sleep. I didn't see the doctor today (we slept through rounds .. ooops!) so I guess I will find out tomorrow if there are any real changes. Otherwise, Hannah's numbers are better than back when all of this started. Today her ANC was 2,253. White Blood Cell count was 3.1, Hemoglobin 8.8, Platelets 76. Her numbers are still far from normal but at least her white blood cells are responding to the Nupegin she is getting through her IV every other day.

Today is day #72 in a hospital room since December 1st ... but who is counting!?! Me, I guess. I got out a calendar last night & actually counted!! I had to go back to my blog to remember the details of the last few months ... good thing for this journal of my life. Otherwise, I think all of this would just become a big blur in my mind (well, it actually already has!).

Hannah kept busy today with tap dancing, running with her IV pole in the hall, crafting, watching movies & seeing some of my friends that came by ... and not to forget, seeing Lily with Aunt Kim!!

We had Nurse Vicki today & can I just say, THANK YOU!!! Vicki, I know you read this blog (hello from room #1303!!). We are so grateful for your good care of Hannah whenever you are assigned to her (and me!). Being in this situation has been a million times better by all the wonderful nurses we have here, like yourself ...know that you truly make a huge difference in the lives of others ... and Hannah loves that you giggle at everything she does! Words are just inadequate to express my thanks!!

Being on this floor we have met many different families. I have mentioned a sweet 10 year old boy, Chance, in the past. Please pray for him as he is most likely going to have a very sophisticated treatment at City of Hope. Specifically, please pray for his tumor to shrink!!! He is such a sweet boy. His mom and I bonded a lot while they were here this past week. They were in the room next to us so in many ways I felt like I was back to life in a dorm - unfortunately the "dorm situation" here is very different. But we both strive to just make the absolute best of things for our kids. I do crafts. She picks ups Nerf darts from the floor all day long. Whatever it takes!

OK, please pray for Hannah's intestines to continue to heal & that she will be OK when the antibiotics slow down & she is able to start back on food (at least another week). Also, please specifically pray for her attitude as some different friends of mine are lined up to come be here with her so that I can get out a bit each day. She doesn't know this is going to start tomorrow night but at this point, for my sanity, this is a necessity!!

Thank you for the constant stream of love & encouragement we receive through phone calls, cards, texts, emails, meals, gifts & comments.

Sunja -- thank you for coming to cut Hannah's hair -- it looks so cute!!!!
Mr. Chris -- thank you for coming!
Wendy, Jenna & Mrs. Smits -- great to see you all!! Hannah is so happy that her picture is going to be shown to "all the kindergartner kids!"
Kim -- ALWAYS great to have you here!! I know Hannah is going to love her surprise sleepover with you, once she gets over the shock that Mommy is not sleeping here that night!?!

"And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose."
Romans 8:28

AMEN!!! We know God is using all this for His good purposes ... even if we don't understand or know why.

Tap Dancing Girl

Hannah has been enjoying new tap shoes & entertaining everyone that comes through the hallway on the Peds Unit. She prefers to tap in the hall. She says the sound is better on that floor (even though it is the same as our room just a different color flooring?!) She has me crank up the music on my laptop so she can dance her little heart out to "Double Dutch Bus" by Raven Simone & some Cheetah Girls music. It is so cute & I am sooo thankful she has the energy & spirit to be dancing away .... while attached to 3 separate IV machines.

Hannah doesn't know this yet, but Aunt Kim made arrangements with a dance teacher from our church to come teach her some tap moves. She will be coming on Saturday morning to the hospital. I know Hannah will LOVE it!!! Especially a one-on-one tutoring class for tap dance!!!

I didn't post last night because I took 2 sleeping pills & slept from 8pm - 11am. We were up numerous times for trips to the potty but overall I slept like a mad-woman. Hannah let me sleep in the evening while she hung out in the hall with some of the nurses ... and tap danced for them. It was a real gift she gave me by letting me sleep!!!! I have been wiped out the past 2 days or so. Last night I was so weepy feeling like I am doing such a bad job being a fun mom for Hannah. After a good night of sleep, I feel so much better ... thank you, Lord!!!!!

I talked to one of the Oncology / Hematology doctors this morning & he said Hannah will have to stay another week to three weeks. An infectious disease specialist says that Hannah needs to remain "NPO" (no food or drink) & on the IV anti-biotics for a total of 4 - 6 weeks. Since this Thursday will be 3 weeks since NPO & IV anti-biotics started, that gives us for sure another week or 3 weeks of living at the hospital on this visit. I am gearing up for 3 weeks ... anything less than that will be a pleasant surprise!!! I am so ready to be home .. all four of us together ... not to mention sleeping in my own bed & enjoying a TV that has Fox News!! :-) The hospital has CNN -- OY! Need I say more?!

Huge Praise!

Hannah had another ultrasound done this afternoon. I just caught a glimpse of the report from the radiologist & it showed that the cecum area of Hannah's intestines has improved significantly!!!!!!!!!!!!! Oh my goodness .. what a relief to see those words! She is not completely over the Typhlitis but we know from the ultrasound that she is getting better ... THANK YOU, LORD!!!!!!!

Hannah has only been asking for morphine today for some pain she has been having in her leg. I don't know what that is all about but it has been terrible pain. On the pain scale she has been saying it is an 8 (1 - 10 scale). With the intestine pain, I think the highest she ever went was about a 7. Maybe her legs are sore from all the running she has been doing in the halls. It is so stinking cute to see her run down the hall pushing the IV pole. Really, no one would believe she is as sick as she is if they just saw her running with all the energy in the world for a few minutes (afterward she is very tired!).

OK -- Lily is here tonight. She is already sound asleep & hopefully will stay that way for most (or all) of the night!! Hannah is watching Annie's Royal Adventure & loving it!

Thank you for your prayers for Hannah's intestines ... please, keep praying for her to make a full recovery from Typhlitis & Aplastic Anemia. Thanks!!!

All God's best from Kaiser Fontana --

PS --- And just for fun, here is a picture of me & Hannah from September 8, 2002. She was 8 months old & such a cutie pie!!!

11pm Burrito

Hannah is still "NPO" ... meaning she can't eat or drink anything so I resort to eating when she is sound asleep (or I can sneak food into the bathroom). I am about to enjoy a bean & cheese burrito :-)!

Hannah did a lot of painting today & is planning to set up a table outside her room with her projects & a sign that says "Hannah's Craft Sale". I will definitely get pictures when it all happens! I think it is so adorable how she sits here & thinks of ways she can earn money. So funny!! It was right around her age when I started to shovel snow for the neighbors to earn money.

Hannah had a good day today just hanging out & doing a bit of the same agenda as every other day: Crafts & Movies! She has added two things to the agenda: running in the halls & dancing with the IV pole. Oh my! She is a crack up!

The best is when she has just had morphine & is on a "morphine high". At those times, she tells me over & over what a great mommy I am, what a great daddy she has, and how much she loves us. Tonight after her morphine she had Jim & I holding both her hands just because. Sad that she needs morphine but she is so sweet when she has it!!

I appreciate the care of so many! I got an email tonight from a friend of a friend that knows Vanessa Hudgen's mother. I guess they put together a package of HSM stuff from Vanessa for Hannah. The package should be here on Monday or Tuesday. How fun will that be!?!!

A great quote that I read in my book called, 31 Days of Praise:

"Thank you that You meant for good the terrible things that happened to Joseph, who was sold into slavery, exiled to a distant country, and later sent to prison on false accusations ... and that through all this You had him in the right place at the right time, for highly important reasons. I'm glad, Lord, that you are the same today - well able to work things out for us, to turn evil into good. I stand amazed at the complexity and mystery of Your wisdom. How safe it is for me to trust Your reasons for acting (or not acting) and Your methods of working!"

Thank you, Lord, that I can trust You completely to be working all things out during this trial for Your good purposes in our lives!!

Grandma & Grandpa

My parents have been here a lot these past 11+ weeks (Mom, especially). I have lost track of how many flights they have taken from Philadelphia to California. Last night Lily & I drove them to LAX for their long-planned trip to HAWAII!!!! Hannah won the lottery with these grandparents ..... Thank you, Lord, for these two wonderful people that love you with all their hearts, love each other & have loved us every day of our lives. My sisters & I have always felt love from our parents .. it was never a mystery for us to try to figure out or something that had to be obtained by "doing something"... the love was always just there -- unconditionally. So, thanks, Mom & Dad -- enjoy this time together in the paradise of Hawaii! We all love you!!!

Today was Hannah's Art Class .. it went great & Hannah is looking forward to the teacher coming again next Thursday. They painted a lot & got to know each other. The teacher is a young woman from our church that I met through the nursery one Sunday when I was in there hanging out with Lily. I think it is going to work out very good for Hannah to have these art lessons & also, it works out great for me to have a break in the middle of the day to leave the hospital. Today Lily & I went to an incredible Thai restaurant for lunch & then we went to Michael's. I went in for one thing -- but you know how that goes-- I left with $50 of craft / painting stuff for miss Hannah. She is really into painting right now. Last night she had the secretary get her a box so she could paint it. I liked the box so much, I bought it from her for $2 so I can keep Lily's toys in it here at the hospital. Hannah is some little negotiator & entrepreneur. Yes, the girl is definitely related to me!!!

Right now Hannah is sound asleep (in the chair!?) with 4 IV pumps attached to her IV pole. She got her port needle changed today & it was traumatic but she held still & did amazing considering how much she was crying. I started crying because she was saying "I'M DONE!!! I'M DONE!!! NO MORE NEEDLES!!!" It was just so sad & all I could say was "I'm so sorry" There really are no words to express to her how much it hurts me to see her hurting & scared like that.

On a much, much lighter note - last night Hannah discovered a new dance partner, her IV pole. She was in the hallway & decided to start dancing. She was holding onto the pole like a dance partner & singing along as they danced down the hall. So, as her Mom, I am wondering -- after 11 weeks in the hospital, is it really bad that my daughter has become an "IV Pole Dancer"??!! :-)

All God's best from Hannah Fontana's Suite #1303 --


"Just as a father has compassion on his children, So the Lord has compassion on those who fear Him." Psalm 103:13


P.S. -- Big time kudos to Kaiser for listening to my criticism when I stopped in the Administrator's office a few weeks ago for them to taste Hannah's lunch tray. The person I met with came by our room today & said they are starting a brand new Kid's Menu in less than 2 weeks because of me going to them. I was so happy to hear that there will be changes!!! Who says one person can't make a difference!?!?

Do You Know ANOOP from American Idol, Season 8?

So, we watched American Idol last night at the hospital & Hannah's absolute favorite contestant is the young man from North Carolina, Anoop.

So, I was thinking ... do you know Anoop? Or do you have any connections with the folks at American Idol? If so, could you do me a HUGE favor & see if Anoop would make the drive from Hollywood to Fontana to meet miss Hannah?!?!? After 2 weeks with no food & 11 weeks in & out of the hospital, I think Hannah certainly deserves a big time emotional "pick me up". Wouldn't that be cool for Anoop to show up & surprise Hannah & sing her a song?

I really think it could happen for Hannah ... so think, who do you know that might know Hannah's favorite Amerian Idol contestant, Anoop!?!

Today's update on Hannah: her numbers are holding & her white blood cell count is responding to Nupegin so her numbers are about 3.4. She is still requiring red blood cells & platelets at least once a week. She is also requiring morphine every 2 - 4 hours because of the pain in her intestines. Today she did lots of crafts & enjoyed the morning with Lily at the hospital.

Tomorrow Hannah is starting "art classes" with a tutor that we hired to come for a few hours each week. She is really into art so I know she is going to love it!! Tonight Lily is sleeping over again & although I don't sleep as well, who cares!?! It is so great to have Lily with us - even late, late at night -- she never stops smiling & being a happy, happy baby. Thank you, Lord!!

We truly won the lottery with both of these precious daughters!

“In the morning, O LORD, you hear my voice; in the morning I lay my requests before you and wait in expectation.” Psalm 5:3

Psalm 27:13-14

"I had fainted, unless I had believed to see the goodness of the Lord in the land of the living. Wait on the Lord: be of good courage, and He shall strengthen thine heart: wait, I say, on the Lord."

Nothing new to report today. Just hanging out. I am home right now with Lily & my parents (they leave tomorrow for Hawaii!?!). Hannah & Jim are hanging out at the hospital ... watching movies, I bet! Lily & I will be back at the hospital in time for American Idol tonight. It will be another girl's sleep over but this time I am bringing some Benadryl for the Lil! :-)

Ultrsound Results & More

As we were watching a movie tonight, Hannah handed me the above picture that she had just drawn -- it says, "I wish I was doing this right now". It is a picture of her eating cereal. I wanted to cry my eyes out - the poor girl hasn't had anything to eat since February 5th?! So sad. She is handling it all well but I know it is really starting to wear on her. Eating is so much fun -- especially here in the hospital when one of the best things we usually do is eat snacks & cereal.

The ultrasound showed no change to the swelling in the cecum area of Hannah's intestines. I was very disappointed to hear that things hadn't changed but our friend, Dr. Alan Taur looked at the results & called me to say he was encouraged that the Typhlitis is at least stable. He reiterated that her situation could have gone down hill very quickly with Typhlitis & we are very fortunate to have things stable. So, after being disappointed with the ultrasound results, I was glad to hear Alan say that "stable" is a really, really good thing for Hannah. Who knew that stable was such a good thing?? I am still getting used to this world of Aplastic Anemia medical issues.

We had a fun sleep over last night -- Hannah slept awesome (except getting up every 2 hours to go potty!). Lily wanted to party in the bed with me at all hours but she was so stinking cute in the process. She never fussed & only wanted to smile, bite my fingers & play all night long. Lily is at home tonight sleeping it up with Daddy, Grandma & Grandpa. :-)


Please pray for the swelling in her intestines to significantly decrease. Pray for her pain to go away. Today she has been asking for morphine every 2 - 4 hours. Pray for her spirits as I know we are going to be here for at least the rest of the week (but I am gearing up my own mind for at least a month this visit). And, last but not least - pray for her precious little bone marrow to come back full force.

It feels so distant that Hannah was just a healthy child at the beginning of this school year. How was it that life was so normal & we were packing our bags to get Lily in China? How are we now living in this parallel universe of hospitals, transfusions, ultrasounds & sleepless nights in a hospital room? I can't seem to wrap my brain around everything that has transpired since December 1st but maybe it is just God protecting my mind. He certainly can do absolutely anything!!

"You will keep in perfect peace him whose mind is steadfast, because he trusts in you." Isaiah 26:3

Lily Pictures

Scrapbook pages .. just because!!

In the Hospital Room with Two Sleeping Girls

Per Hannah's request, Lily is here tonight to sleep over. Thank you, Lord, that the hospital is fine with her being here with us!!!! I don't know what I would do if they wouldn't allow her in the room. When Hannah had C-Diff, I understand that Lily couldn't be here because that is something that could harm Lily.

Truly, Lily is probably the best medicine that Hannah could possibly receive. Tonight I was holding Lily while she was trying to fall asleep & Hannah just kept kissing her forehead & touching her cheeks. It was so sweet. These sisters are bonded despite the time they have spent apart in the past 10 weeks. I love to see the way they love each other!

I went to church today for the first time since before Thanksgiving. It was so great to be there .. but of course, it felt so strange since I was there without Jim & Hannah. It was just me, Lily & my parents. Jim came to the hospital this morning so I could leave in time for church. At church, it was odd to see Hannah's name listed in the bulletin under "pray for those in the hospital". How was her name the only one listed in that place?! It is still surreal that any of this is happening. I know it shouldn't be after ALL this time of sleeping in the hospital every night with her but it just is. I don't know how to explain it.

So the update on Hannah -- the doctor has lined up a GI Specialist to come see her every day. I have no idea how long we will be here this visit. It is so day to day with this illness & all the many, many potential complications. She will probably have an ultrasound tomorrow to try to see what is happening in the intestines. She is still prohibited from eating or drinking. She is attached to an IV pole 24/7. She has 3 tubes with access to her body via the port in the center of her chest & the PIC line in her right arm. Every time she gets up we have to drag the IV pole with us...a pain but just the reality of life for her these past 10 weeks. The entire time we have been in a Kaiser hospital she has been hooked up to the IV pole 24/7.

Today Lily is 17 months old .... & Hannah is 7 years, 3 months. The days just keep rolling by but I am making the absolute best of each & every day treasuring these two precious lives.

Lily just woke up & is on my lap touching the computer with her feet .... I'd better get off to go to sleep with her!

All God's best --

Valentine's Day

It felt like Christmas today! I was blown away by all the cards & gifts that Hannah received -- wow, wow, wow! Thank you to everyone that remembered Hannah in such a kind way!!!!!

Hannah got sick to her stomach today out of no where ... we had just walked in the hall for a bit with Lily so I don't know if it was just too much activity for her. Besides that, she has been feeling better & has cut way back on the amount of morphine she needs. She is no longer on the morphine drip so that is an improvement from when we were at Kaiser Sunset. Her blood counts are doing ok but she is still requiring blood & platelet transfusions about twice a week. She still isn't allowed to eat or drink anything and tonight I know it really made her sad to have passed up all the Valentine candy ... but it is all waiting for her when she is better.

I am so tired right now ... last night we had fun with our Lily-sleepover but I didn't sleep well at all. Hannah slept great and Lily slept ok ... so that is all that really matters! I had a migraine & didn't have any medication to take .. even over the counter stuff.


Today I left the hospital for several hours. My parents took Lily out for sushi & shopping while I napped. Then the girl that does my hair came to my house & did my hair (for free, by the way!?!?!) I truly was not expecting that! Cut, color, highlights & style. Can I just say: THANK YOU, ALLIE!!! You have become such a dear friend over these years & I am so thankful for the gift you gave to me today!!! Truly, a gift that will keep on giving ... well, at least until the gray hairs start winning the battle all over again. :-) THANK YOU!


"For I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come, neither height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord." Romans 8:38-39

On this Valentines Day, may you know the LOVE that God has for you 24/7/365!!! His love is never ending!

Scrapbook Page from Kaiser Sunset

Just so we never forget our "wonderful" week in LA with Kaiser ... here is a scrapbook page to document some of our time & the ambulance rides.

Feeling Back at Home in Fontana

Hannah was up about every 2 hours last night because of the drip of nutrition she is receiving .. it was making for regular trips to the potty. I am hoping we can slow down the nutrition drip for tonight so we can get a solid block of sleep :-).

Lily is on her way here & going to camp out with us tonight in my bed!! I have the most adorable little Valentine outfit for her to wear tomorrow.

Hannah & I are both so glad to be back at Fontana. Personally, I feel so comfortable here that this morning when I went down the hall to take a shower in the "shower room", I forgot to put the sign up that says "IN USE" and I also forgot to lock the door!?!!? Yes, I think it is safe to say, I feel at home at this place! Good thing no one else planned a shower for that same time this morning!

Tomorrow is a Valentine's Day party here on the Peds Unit. Hannah still cannot eat any food but she is still looking forward to some fun with the other kids here tomorrow. Thankfully, her C-Diff has come back negative now so she is not on isolation any more.

Blessings & Love from Room #1303 at Kaiser Fontana --

Fantastically Fabulous Fontana!!!

We are back!!!!!!!!!!

NEVER in all my life did I think I'd be so thrilled to be going to a hospital!?!?! Truly. You would think that ambulance was driving me to Disneyland - I was so excited to be going back to Fontana. It feels like home being back at Kaiser Fontana!!!!

We were welcomed back by nurses who know us & personally greeted Hannah by name when we came into the Pediatric Unit. Claudia, the Child Life Therapist, had already gone home for the day but she left craft stuff and the movie "Big Fat Liar" in the room for Hannah.

The ambulance drivers got us back to Fontana by 6pm. Jim and my Dad were here so I jumped in my car to go see LILY!!!!! What a crazy week it has been since I last saw her!

Hannah is now asleep & we are settled into room #1303. Jim & my dad hung up pictures & cards all over the walls while I was gone so it already feels like home. They also unpacked all the "stuff" .. thank you!!!

We are so thankful to be back in Fontana & to be so much closer to home. We feel so cared for & loved by the staff here!!! What a difference these wonderful people make in our lives -- thank you, Lord!!!

P.S. -- Skylar A., thank you for the beautiful picture you sent to work with your daddy in Los Angeles. We got it & loved seeing your artwork of us at home together!! Thank you also for the Valentine flamingo .. you are so sweet!!

PIC Line Is Done

After going to bed around 3AM, we were awaken around 8AM with the nurse telling us we were headed downstairs to have Hannah's PIC line placed. Even though it was early in the morning, for us, I was very excited to have this procedure done!!! Hannah went under sedation at 9:20 & was in recovery room by 10:30.

A very kind nurse, Lindsay, from the Peds unit came all the way downstairs to change Hannah's port needle while she was under sedation. This saved Hannah so much stress since it was done while she was sound asleep. Thank you, Lindsay, for your incredible care for my Hannah!!!!! There really are not enough words to thank the many nurses that show so much care, love, kindness & compassion for my daughter. What would I be doing if the nurses didn't care? I know ... I'd be losing my mind!

We are now back in the room on the 7th floor and Hannah is resting in the bed! This is the first time since we have been here that she is actually in the bed!!

Hannah's main doctor here just came by and gave us the green light to move back to our Home Away From Home: Kaiser Fontana. The charge nurse is working on arranging our limousine, well, make that an ambulance but we will just call it a limousine. It probably won't happen until very late tonight but we don't care .. just get us closer to home!!!!!

American Idol

Thank you, Fox, for a great show tonight & keeping my Hannah happily entertained as she continues to sit in the same chair since last Friday.

Right now we are watching E.T. & doing well.

Hannah had a good day. The doctor ordered a PIC line for her so they can have an easier time keeping her on morphine & keeping the medications going 24/7. Hopefully the PIC line will go in tomorrow, if not, on Friday.

Hannah has an incredibly happy heart despite all that is going on. I love to see the pictures that she draws of herself: always with a smile on her face. That indicates to me, more than anything, that she is still her happy little self despite the challenges she has faced these past 10 weeks.

Hannah is getting nutrition through her IV -- 2 bags of it. One bag looks like white frosting & the other one looks like vegetable oil. We are making jokes that I get to lick there the bowl of frosting when she is done.

Please pray for the needle change that will happen in Hannah's port tomorrow (since it has been in one week now) & for her intestines to continue to heal. And, as well, that my happy girl will continue to enjoy each day as we camp out at Kaiser in LA!

Six Months Since Lily's Referral

No words can describe what it was like to see these priceless pictures of Lily after waiting sooo long for her! Today marks exactly six months since we drove to an office to see pictures of Lily & receive our long awaited "referral".

Kaiser Sunset Room 766

We are still camped out at Kaiser in Los Angeles on Sunset Blvd. Hannah was up & down a lot last night so we both caught up on some sleep today. I finally got up for good around 2pm -- thankfully, my Mom had been here for hours helping Hannah get back & forth to the bathroom while I slept. Jim is in Oregon for work & will be back tomorrow. Lily is still camped out at Aunt Kim's .. we haven't seen her since last Thursday & our hearts are breaking without our precious girl!!!!!!!!! Tonight Hannah & I looked at pictures & videos on my laptop of our precious Lily. I can't wait until we are back at Fontana & we can be closer.

Hannah's doctors said that once she slows down on the morphine, we will be sent back to Fontana. Dr. Horvath came from Fontana today and was bearing gifts from the staff back at Kasier Fontana. I seriously cannot believe Hannah's doctor would drive all the way to LA to check up on her & bring presents!?! Wow. The care that Hannah is receiving is just amazing.

I had a talk tonight in the hall with the GI Specialist & he said that Typhlitis can take months to clear up. What?!?!? I wasn't expecting to hear that. He isn't predicting that Hannah's will take that long to clear up but he said "it could". I can just take one day at a time. One day at a time. One day at a time. I can't imagine months of this .. months of nutrition through an IV & months of managing Hannah's pain!?! Oh my goodness.

To top things off, this evening Hannah & I had on the TV on when a commercial came on for ViaCord. It was Mia Hamm talking on the commercial about her belief in preserving cord blood because her brother died from complications of Aplastic Anemia!?! Yes, she actually said that as Hannah & I were watching. My heart stopped. Thank God, Hannah did not catch exactly what she had said ... thank you, Lord! Please, Lord, just continue to protect her little heart from any fear from this illness she has!!!!

Sitting on the potty tonight, Hannah asked me, "When we get out of the hospital can we celebrate with cake?" I just started crying & said, "Yes, Hannah -- we can have any kind of cake you want!!" Oh my goodness .. how is my Hannah so sick?!

God is so good & we are trusting Him for all we need each day and begging Him for Hannah's healing.

Mellow Monday at Kaiser

Hannah slept ALL NIGHT ... thank you, Lord!!! Hannah has been sleeping in the big chair in the room. For some reason she doesn't want to get in the hospital bed - I am not too upset because it has provided a very nice place for me to sleep while we are here in LA!

Today we met the Oncologist/Hemotologist - he was very straight with us about what an emergency situation this is for Hannah. He told us that this complication only occurs in about 10% - 20% of Aplastic patients. So considering that only 600 - 900 people get Aplastic Anemia each year in the USA, Hannah is in a very small group of people with Aplastic Anemia & the Typhlitis complication!? The doctor here also told us that he has a lot of personal experience with AA & Typhlitis because his brother had this when he was 16 years old .. and today his brother is in his 4th year of medical school. Such a relief to hear about someone that made it through this & has gone on to live a normal life -- that is my hope & prayer for Hannah!!!!

The doctor said once they feel her intestines are out of danger of perforation they will move us back to Kaiser Fontana (hopefully by the middle of this week). He also said that Hannah cannot eat or drink anything for ANOTHER WEEK!?! She hasn't had anything since last Thursday. I do totally understand because her bowels need to have a complete rest so they can heal.

Please pray for her intestines to heal quickly, for her pain to be at a minimum with the morphine & pray for her to not have any kind of an appetite since she is completely restricted from food. She is getting fluids in her IV & thankfully she was not underweight when this all started~!

Right now, Grandma & I are hanging out here in the room -- playing Sudoku & watching TV. Hannah is watching movies & enjoying her big chair while the IV antibiotics & morphine continues to flow into her precious body!

Thank you for praying for Hannah & checking in on her via this blog. I know there are people that read this & pray for her that we have never even met: thank you!!

"Hannahwood"

Hannah & I decided that the sign on the hill should be changed to HANNAHWOOD not Hollywood!

Hannah & I were up all night last night (Saturday). She was very mellow, had a fever at some point through the night, and threw up once but she actually was sitting up in the chair & watching movies so that was a big improvement for her! Her pain is much better but she is on constant morphine and in addition she has a button she can press for extra morphine. Thank you, Lord, for pain meds!! I cannot imagine the excruciating pain she'd be in if it wasn't for the pain medication. The doctors were in this morning & they are encouraged that at least she is looking better than a few days ago. She is still very ill & the doctors are still very concerned with the Typhlits & C-Diff but she at least is sitting up & not having as much "tummy evacuation" as she'd been having. She has not eaten anything since last Thursday when we were at the clinic. Last night she was asking for food but when I explained she still can't really have anything to eat or drink she just accepted it. Honestly, if this was me at 7 years old I would have been screaming my head off. She just amazes me with the way she copes with all the things she is going through. Truly, I have one incredible little girl -- she is remarkable!!!

It is so hard to explain what it feels like to be here. Life is just so totally upside down right now & in the background of everything I keep thinking "what are we doing here? HOW can my Hannah be so sick!?!!!???!". I left my house in a hurry on Thursday to get Hannah to the clinic in Fontana b/c of her pain. I thought we'd be gone a few hours. Then we were admitted to the hospital & then several hours later we were in an ambulance on the way to Los Angeles. It is so strange to have to get acquainted with a new place after getting so acclimated to the hospital in Fontana. It is just a blurr of things like: where is the closest bathroom? where do I go to get ice? who are the best nurses? where do they keep the DVD players for the rooms? Once again, everything is new. Hannah really misses the hospital in Fontana. She LOVES the nurses on the Peds Unit at Kaiser Fontana (me, too!!!). Hannah is really hoping we don't have to stay here too long because she wants to go back to the nurses she knows & loves :-)

Lily CANNOT visit down here because of Hannah's C-Diff. That is such a bummer because we are really missing her!!! I feel like we are sooo far from home even though we are just about an hour away. Hannah is on isolation so she can't leave the room or have kids come in here.


Right now Hannah is sitting up doing "dot art" and watching a movie. She hasn't left the big chair in the room all day but she looks so much better than a few days ago. Please keep praying for her healing. Please pray that her intestines will heal, that there will not be any perforation in her intestines & that her bone marrow will respond to the ATG treatment she received back in December.

I had a good talk tonight with a mom, Stacey, whose daughter was diagnosed with Aplastic Anemia a year and a half ago. She really encouraged my heart but also reiterated what I have been mentally & emotionally dealing with: this is a L-O-N-G road to recovery. There is no speed track. Hannah's body just has to respond & do what it is supposed to do. Please pray the Lord would continue to give us all the grace we need for each day!! He has been so faithful .. and without Him, I'd be a crying mess in front of Hannah all the time. I have been able to hold it together & keep positive despite her questions of "Can I die from this?" Truly, it is just God's wonderful never-ending grace that is new every day!!!!

You are Going to Hollywood, Baby!

Sorry for not updating sooner ... I haven't even turned my computer on since yesterday. We are in a private room with a clear view of the "Hollywood" sign -- I told Hannah, like they do on American Idol, "You are going to Hollywood, baby!" Well, we are here.

Hannah has been sleeping a lot. She is in a lot less pain than Thursday when we went to the clinic but her tummy is still very, very upset. The morphine is helping with the pain & also now that her stomach is completely "cleared out", she is doing better than the past 48 hours. She has been running a fever today. Her spirits are almost non-existent as she is asleep most of the time or not feeling good when she is awake. Just late this afternoon she watched a bit of a movie ... I even heard her laugh (a beautiful sound!!!!!) and that was the first since Wednesday night.


Hannah did great during her CT Scan last night. Jim & I got to be in the room with her & she did terrific. The scan showed an infection called, Clostridium Difficile ("C Diff"), in Hannah's lower intestine. This is in addition to the Typhlitus that the ultrasound showed the other day. Thank you Lord, that today we found out there is no surgery necessary and the "C Diff" is a known, treatable condition, requiring a two week course of IV antibiotics. Hannah is not out of the woods yet as the C Diff can perforate the wall of the intestine, creating a critical condition. The doctors want us down here at the hospital in LA where there is a team of pediatric specialists just in case she needs surgery, etc.

I was so tired last night after pulling an "all-nighter" on Thursday / Friday when we got transferred to LA. I am soooo happy to be out of ICU -- the night we arrived here we had a very unpleasant nurse so that didn't make things easy that first night / morning. Since then, our nurses have been absolutely wonderful ... Rose, Preetha & Mirba ... thank you, Lord!

We got into the Ronald McDonald house yesterday -- thank you, Lord! Jim checked us in & I slept there last night. It was a wonderful night of sleep & the place is such a haven for us during this time!!!! My mom stayed at the hospital all night with Hannah (Mom is now at RM House catching up on sleep). Hannah slept most of the night -- got red blood cells & platelets -- took tylenol, morphine & slept.

This hospital visit is much different than our other stays -- Hannah actually seems sick to me this visit. I know what you are thinking: "DUH!" But the past hospital stays have been a lot of her feeling fine most of the time .. you know, "Camp Hannah". This visit is "Camp Food Removal From Tummy" & "Camp Pain"! Poor Hannah!!!

Despite LA traffic & rain on a Friday night our pastor, Glenn Gunderson, came to visit & pray with Hannah. Thank you, Glenn!!! Also, Aunt Kim & Uncle Kevin couldn't be kept away ...not like we tried :-) Lily is back with them ... and hopefully in a few days when things settle down we can see her.

Thank you to all who have been a support to us during this time - thanks for your comments on the blog & prayers!!!

Joshua 1:9 - "Be strong & courageous, do not be terrified for the Lord your God will be with you where ever you go" (Diana, thank you for that reminder today - it is one of my favorite verses!). Let's just say when the doctor starts talking to you about how sick your child is, you feel pretty darn terrified!! It is so true though that we know He is with us! We know He is watching over our Hannah & all we can do at this time is trust in Him with all of our hearts. There is nothing we can do. Nothing any one can do. All we can do is call upon the name of our Heavenly Father to heal Hannah & use the medicines to make her well.

Thank you to all of those who have been a support in so many big and small ways.

Here in ICU

Hannah has been resting on & off .... right now she is sleeping with the morphine release button in her hand.

We met with the GI Specialist & it was shocking to hear him discuss with us the severity of this complication. They are going to do a CT Scan with contrast this evening to try to see more of what is going on inside of Hannah's intestines. The doctor spoke very frankly with us that Hannah's situation is very, very, very serious. I don't remember if he used the words "life threatening" but that is what he was talking about. I honestly can't believe this after the good week we have just had. I asked the dr. if I missed some sign of Hannah's complication & he said no way. Her body isn't presenting signs of infection like it normally would. Normally she'd have a fever from something like this but because her body is so immuno-suppressed she doesn't show signs of illness the same way she normally would. She hasn't even had a fever and here we are sitting in ICU being told how sick she is!?!!

I just got off the phone with my sisters & was reminded to just take one step at a time. The Lord is the lamp unto my feet -- for today & for this step right here, right now. Thank you, Lord, that you are faithful ... even when nothing is making sense.

Is This For Real?

This is Debbie -- I have not slept all night. We were transferred by ambulance last night from Kaiser Fontana to Kaiser Sunset in Los Angeles. Right now we are in the Pediatric ICU for observation. We will be moved to a private room when it becomes available.

Hannah's ultrasound last night showed something called, "Typhlitis". On the advice of my mother I am not googling Typhlitis ... basically it is an inflammation of the intestines but besides that I don't know all that much. Hannah's counts are still very low even though they are better than they had been in the weeks past. Her condition is very serious -- to be honest, this whole thing is such a shock to me because on Wednesday she was dancing to Shania Twain, had school for over an hour & played with her sister all day, saw friends that live across the street... it was just a normal day!!! She has not had a fever so when she woke up on Thursday with major pain I just thought it was a side effect from the medication she is taking.

It is just hard to imagine that after 8 great days at home we are back on the "hospital roller coaster" for at least a week -- if not longer.

Right now we are at a hospital about 50 miles from home so it will be a much bigger challenge taking "shifts" here at the hospital. We are so far from home that until Hannah is much more comfortable I won't be leaving at all. My mom & I are both here at the hospital & Jim will come this morning (I insisted he get some sleep at home!)

Please pray Hannah's intestines clear up ... she is really in a lot of pain when her abdomen cramps ... even if she has morphine in her system and she has A LOT of morphine in her system!!!

Back in the Hospital

Hi,
Aunt Rachel here reporting for "blogging duty."

Hannah was having abdominal pain today. She's been admitted overnight. An ultrasound will be happening this evening to see if they can get to the root cause of her pain.

She's been given medication so she isn't in pain currently. I just spoke with Debbie. Hannah was asleep. Debbie sounded like she'd soon be on her way to joining Hannah in some much needed rest.

Pray this would really only be an overnight visit and not a long term one!

Indulge my opportunity to get on my soapbox for just a moment.
Living 3,000 miles apart from Debbie while all of this is going on has been heartbreaking for me personally. I'm so grateful to the friends who have shown themselves to be family that live nearby (and those that live all over the planet, for that matter).
Thank you from the bottom of my heart!
Words can't express how my heart rejoices!
Debbie shares the wonderful things so many of you have been doing.

Mom, as much as I miss you, I'm so happy you have a free schedule that allows you to be in California. You mean so much to all three of us. Dad, you too! The impact and example that you both are to your daughters, sons-in-law and 6 (7th on its way) grandchildren in remarkable.

Keep praying for Miss Hannah's bone marrow to come back from it's vacation. Vacaction is over boys. Let's get back to work.

10 Hour Day @ Clinic

We got home around 8:30pm after spending 10 hours at the clinic today. Yes, it was a marathon day for us but Hannah did great. We worked our nurse like crazy -- thank you, Nurse Lisa!! Hannah got red blood cells & platelets. Her numbers were low for those two things but her white blood cell count is still holding at 1.9 ... still very low but I am so glad that hasn't dropped back to almost zero. We had a good day -- napping & watching movies, snacking & just hanging out. Her teacher will come to our home tomorrow since we ended up not getting home in time for school stuff to start today.

Mom was at home with Lily all day -- they had a great time but mom is fighting a cold. Thank you, Mom, for being here with Lily!!!!! Jim was working & is also fighting a cold that I guess I brought home for all of us to share, except for Hannah, who still hasn't come down with the cold!!! Thank you, Lord!!!!

We are doing well & celebrating that tomorrow is officially 7 days since Hannah came home from the last visit at the hospital!!!!!!!!!!!!!!!! This is the longest we have been home since Hannah got sick. I am so grateful to just be home. Also, I am so thankful for the flowers I see growing around the perimeter of our home each time we pull into the driveway or walk out in the backyard. Thank you, again -- Wendy, Jeff & Crew! Your flower/trimming/lawn/ weeding gifts brings joy every day!!!

I am very tired right now .... off to bed so I can get up with a smile to meet sweet Lily in the morning!!!!!!!!!!!! I didn't see her at all today & I miss her!!!!!!!!!!!!!!!!!!

All God's best from HOME --

Lily Home 4 Months: 2/1/09

Yes, we are still home!!! I slept all day on Sunday until an hour into the Super Bowl. My mom & Jim did enjoy the game except it was bitter sweet for my Mom because she is a huge Philadelphia Eagles fan!!

Hannah is doing well and I am SO pleased to report that (thanks to the prompting of my Mom) I have been able to get Hannah off of ALL pills!!! I emailed the NIH & they dropped a medication that is not ultra-necessary and the last pill is going to be switched to liquid form when we go to the clinic tomorrow. Hallelujah!!! She still has to have a shot every other day to help with her white blood cell count but besides that we are doing so much better with all of the issues we were having!!!! I feel so much less stress here at home since we are not playing "take the pills" every evening!!!!

The pictures are from our time on Saturday at Victoria Gardens. We walked around for a tiny bit -- it was such a beautiful day!!! 76 degrees & perfect~! We went on a carriage ride around the mall & Hannah just loved it! I was sooo happy that all of us were able to do that together! After the carriage ride, Hannah took some pictures of the horse all on her own - so cute! :-)

Tomorrow (Tuesday), 2/3, we go back to the clinic. I am very curious how Hannah's numbers are holding up.

Today my cleaning lady came & cleaned for FREE because she is so wonderful & knows what we are going through. This is the 2nd time she has done this in the past month ... just incredible! The blessings & kindness of so many just never ceases to amaze my heart!

I was telling my mom how bad I felt that I have not sent out thank you notes to soooooooooooo many people. She told me to just relax & that people are not expecting a thank you note (you aren't?) Please know that I (we all) appreciate the kindness, gifts, love, meals, caring, cards, calls, texts, cakes, flowers, gardening, etc. I am so very thankful to the Lord for the amazing community of people He has brought into our lives & surrounded us with for this road we are walking. Thank you, Thank you, Thank you!!!! (Now, I'll go back to not feeling guilty about those thank you notes....at least until next month when I have PMS again!)

Please keep praying for Hannah's bone marrow to respond & come back full force!! Hannah's "home teacher" is coming tomorrow at 4:30pm. Please pray that Hannah will connect well & be excited to meet with her brand new teacher each week.

All God's best from Mi Casa!!!!

A Night Without Much Sleep

I just wanted to post a quick update -- it is 9:30 am & I am about to go back to bed. Hannah & I did not get much sleep at all last night. Her poor tummy has been very upset since most of yesterday although last night was definitely way worse. Please pray she is able to keep stuff down that she is drinking right now. If not, Dr. Horvath has a bed waiting for her at the hospital. Hannah's temp is in the 99 range. Early this morning it was 99.8 .... oh my! Let's just say, maybe it is a good thing that I don't unpack my suitcases right away :-)

Later I will try to post pictures from yesterday ... I have some really cute pictures of Lily walking.

Off to bed!