Pool Pictures

Just some fun pictures from Memorial Day in the spa at Aunt Kim's place. These pictures are of Katie, Ryan, Hannah & Lily! I am so thankful for the sweet relationships all the kids have ... good thing since we all spend a lot of time together!

We don't have to go back to the clinic until NEXT Thursday since Hannah's numbers got checked today. Her wbc is 1.4; hemoglobin 8.1 & platelets 44.

Girls Away for the Night

Hannah & Lily are enjoying a sleepover at Aunt Kim's so that Jim & I could get some stuff done and go out to dinner with friends.

I mailed off some of the preliminary paperwork for Make-A-Wish with a letter asking that we do the trip this summer. I would really like to get that moving as Hannah is constantly talking about her ideas & what she might like to do. I am thinking she has decided on a trip to NYC for a shopping spree at American Girl Place & see a Broadway show. It is all up to her but that seems to be the idea that she keeps going back to.

Jim talked to our doctor at NIH today & I think we have consensus for Hannah to get a round of ATG Horse when we go back in June, regardless of what treatment she might get after that, if needed. I am so thankful that Jim takes an active role in consulting with the doctors. I, on the other hand, am working on new family scrapbook pictures to hang on the walls for our hospital stay at NIH. I really appreciate that Jim does a lot of the legwork investigating the treatment options.

I have to take Hannah to the lab in the morning to check her Cyclosporine level (the medication that keeps her immune system suppressed). Her doctor called to say her levels came back high so we need to go get it checked again. Except for that, we are off until Monday.

Our child life specialist emailed us & she got us tickets to the Wild Life Animal Park in San Diego for this Saturday. What a nice treat for us ... thank you, Claudia!

I promised I wouldn't blog about the details from tonight's dinner but let's just say you want to be dining with 2 calm doctors that know a thing or two about the Heimlich maneuver when things go wrong with the Korean BBQ. It was an eventful dinner ... and thankfully, we all lived to tell about it.

Enough said.

Just Thinking

Up late ... again.

We had a great day at home & spent time visiting Hannah's best friends, Arielle & Moriah. Hannah was so happy & did not want to leave but I have promised a sleepover very soon! Lily, of course, was her precious perfect little self even though she was tired by the time we left.

This evening, Jim talked with Dr. David Margolis in Milwaukee,WI. He is the leading expert on Bone Marrow Transplants for Pediatric Aplastic Anemia patients. We are processing a lot of information right now about the next step for Hannah's treatment. Truly, it is just so hard to hear things like "60 - 85% chance for a good outcome".

My heart just seems to hear the other side: 40 - 15% chance for not a good outcome.

Kevin, Kim's husband, said the other day, and it is so true: there are no odds with God.

So true. So true.

All of our days are planned. The One who created Hannah knows exactly how many days she will bless me on this earth. I could be gone long before her. No one knows when will be their last breath. The mortality rate for humans is still 10 out of 10. No changing that statistic.

We are trusting the Lord to direct our steps for which route to take for Hannah's treatment and we know He will give us His peace & strength as we continue through this journey ...

"In his heart a man plans his course, but the Lord determines his steps." Proverbs 16:9

"The Lord gives strength to his people; the Lord blesses his people with peace." Psalm 29:11


All God's best from HOME --

Getting Transfusions

We are here in the hospital & Hannah is getting transfusions ... hopefully going home by 8pm. Hannah already got platelets & now she is getting red blood cells!

Lily is camped out at Aunt Kim's - they sent me a text message with Lily in the carseat wearing Ryan's swim goggles...hilarious!

We don't have to come back for blood check until NEXT Monday ... a whole 6 days!!! :-) Port accessing went perfect today .. thank you, Lord!! Nurse Janice accessed Hannah in the clinic. We had Hannah lay down with a rolled up towel under her back & that really helped.

Hannah & I enjoyed some time together in between clinic & hospital. We ate at her favorite local Mexican place & went shopping at the Dollar Store. Amazing what you can get for $15 at the dollar store!!! She hasn't been out much since she got discharged almost 2 weeks ago so it was a real treat ... oh & we also had Baskin Robbins ice cream!!!!!

Hannah is laying in the hospital bed & I am about to crawl into the crib that is here in the room so I can take a nap. Yes, a crib, don't laugh .... that is how tired I am :-)

All the best from Room #1301 at Kaiser Fontana --

This Weekend

Another photo from the prom ...


We have had a nice weekend at home doing a lot of "just hanging out" & catching up on some serious sleep. I have pretty much gone from one long sleep to the next!

Tomorrow morning Hannah & I go to the clinic for her to get transfusions. For sure, platelets & most likely red blood cells. The clinic is only open for 1/2 a day so we might get admitted to the hospital for the afternoon so we can finish the transfusions over there. I know Hannah is not looking forward to her port getting accessed. As soon as she sees the "blood return" from her port I know she will feel a huge sense of relief & be able to relax for the rest of the day.

The only store we went to all weekend was Target. Tonight while we were walking out of the store, out of no where, Hannah said, "I have hope that the ATG Horse is going to work ... because it worked for A.J." A.J is a boy on the East Coast that has been fighting Aplastic Anemia but he is much further down the road to recovery even though he had his ATG treatment after Hannah.

It is amazing how conversations about Hannah's illness come up at such different times ... it is not like we sit down to have official conversations. Instead, Aplastic Anemia comes up in brief discussions at various times -- like in the parking lot at Target. It is in those little moments of conversation that I can encourage Hannah's heart on her journey with Aplastic Anemia.

Really, it is all of our journey ...we all have been changed by this disease & she far from alone in the struggle against Aplastic Anemia.

For today, I am thankful for hope; hope that Hannah feels & hope that there will be a day of no more tears & no more pain.

"Blessed is the man who fears the Lord ... He will have no fear of bad news; his heart is steadfast, trusting in the Lord. His heart is secure, he will have no fear;" Psalm 112:1a,7-8a

Bone Marrow, Please Come Home!

Another prom picture ... I have so many pics that I might only be posting these for the next year.



Today we went to Kaiser for Hannah's blood to get drawn. Thanks to the good experience on Tuesday at the lab, we went straight there so Hannah didn't have to have her port accessed unless she was going to get blood / platelets. We were pretty sure she'd need transfusions today but before we left for Kaiser, Hannah danced to 2 Janet Jackson songs & told me, "I don't think I need red blood cells since I have enough energy to dance to 2 songs." She was right - we go back next Tuesday for transfusions. Her numbers today were wbc 1.4; platelets 18; hemoglobin 7.2.

Yesterday we went to a friend's birthday party & Hannah was so happy! Happy 7th Birthday, Ethan!! I really did not think Hannah would want to go because she has been very reluctant to do anything with anyone for a long, long time. She was very excited except when we pulled up & she saw a bunch of cars, she had me go inside to see who was there. I scouted things out & reported back to her & then she felt OK about the "bacteria level" & decided to go in.

My heart has been so heavy this week. I see how quickly (you'd think I'd know this by now!!!) an Aplastic patient can go from seeming really good to being really, really bad. There is a girl about Hannah's age at City of Hope right now with Aplastic Anemia. She had a very successful bone marrow transplant & then just before being discharged she developed a virus in her lungs. She is now in ICU on a breathing machine?!? I know there are many bone marrow transplant success stories ... I know that - but my heart has just been creeping down that "oh my goodness, please don't let my Hannah suffer" kind of thoughts.

It is hard.

It is hard to be a mom to a critically ill child.

For me, I have tried to make this all into one big adventure for Hannah but any parent reading this blog knows this road is truly anything but an adventure. Yes, we have fun. Yes, we make the best of all things. But come on, this is a nightmare.

Thankfully, I really feel that Hannah is insulated from the fears that Jim & I have of this road we are on. I guess we have done a pretty good job since she still thinks: Aplastic Anemia Rocks. Truly. I am so thankful for her attitude, her happy heart & for the great week she just had here at home!!

I know God is good. This disease stinks. No way around it. No easy fix to what she has. I do trust in the Lord with ALL my hurting, heavy, sad & confused heart. Trusting God & believing He is good does not candy coat the pain of what my heart feels when I think about the road ahead for Hannah & the possibility of losing her.

She is sound asleep right now on the sleeper sofa in the family room. She is so excited to be sleeping there ... she feels like she is having her very own camp out in her own house. So cute. Too bad Lil is too young to enjoy this camp out ... she is tucked in her crib. My precious Lily is such a doll baby!! I truly don't know what I'd do if we were still waiting for her. God knew. Thank you, Lord, once again for the gift of adoption & the treasure of our Lily that was perfectly planned for our family even though I agonized & questioned You many times during our 3 year wait for her.

We just set up an appointment at John's Hopkins on June 12th to discuss their chemotherapy program for Aplastic Anemia. If we decide on BMT or the John's Hopkins treatment, Hannah will lose her hair. I know that her losing hair is NOTHING if it saves her life -- I know that! But I also know my Hannah is loving her long hair right now & losing it would be a very difficult part of the journey for her. I will really have to work hard to come up with some tricks to try & make "hair loss" an adventure.

No end any time soon to all the fun over here :-)

Dance Like No One is Watching

Here is one of my favorite pictures from our time at the prom on Saturday. At first Hannah just wanted to be left alone on the dance floor ... it was so cute to see her on the dance floor without a care in the world ... no thoughts of hospital stays, port accessing, doctors, scans, surgeries, etc.

It was a dream evening for a girl with a critical illness!

This morning was back to reality of life with Aplastic Anemia.

My alarm was set & we got up for our "clinic day". We dropped Lily off with Aunt Kim & then got to the clinic by 9:40. Hannah had a total meltdown when the nurses came to access her port. All the issues with her port have just built up & built up and I don't blame her one bit for not being able to take it anymore! After a lot of tears & discussion, we talked with Dr. Horvath, who thankfully suggested we go downstairs to the regular blood lab & have Hannah's blood drawn from an IV in her arm versus having her port accessed in the clinic. Hannah was in heaven ... especially since the girl who works in the lab is amazing & could probably find a vein in the dark! Hannah's blood got drawn without any drama -- thank you, Lord -- 45 minutes later the office called to say Hannah's results were back & we don't have to return to the clinic until Friday when she will probably need red blood cells & platelets. Her numbers today were 1.3 wbc, 7.6 hemoglobin, 48 platelets. I talked to Dr. Horvath briefly about going to City of Hope for a consultation for a bone marrow transplant & she is getting the ball rolling for us. I asked her if she thought we were headed down that road & her response was "I hope not."

I can't think too much about all the negatives, all the bad things about this terrible disease & the potentially devastating outcome. All my over thinking recently is enough to make a girl not sleep & constantly overeat. I swear by the time Hannah is well I will be over 200 pounds at the rate I am going!?!

Tonight we had a mini-family-American Idol party. We all drank out of the light-up cups that we got at the prom! Right now Jim & Hannah are busy working the phones for Kris Allen. Wish the voting was for Danny but oh well! Hannah is calling our house the "phone factory" because they are dialing from multiple phones :-)!

For tonight, I am thankful for our little American Idol party, the singing that Hannah did in Aunt Kim's pool today, the huge hug she gave me this evening, the way that Lily peeks around her car seat to see her sister while we are driving & the way my Hannah is constantly day-dreaming about her Make-A-Wish trip.

These are good days.

We are home and I can only be thankful!

"The Lord is my light and my salvation; Whom shall I fear? The Lord is the defense of my life; Whom shall I dread? ..." Psalm 27:1

P.R.O.M

The Highlights:

Hair & Make-up Done
Full Course Meal
Personal Server for our Family
Chocolate Fountain
Family Photo
Hannah dancing in her Cinderella dress
Seeing hospital friends but not looking like our "hospital-selves"
Lily being a bit over-tired

All in all it was an amazing night!

Did I mention that there was no charge for our entire family to attend this incredible event? A huge thank you to ALL the volunteers with the Adonai Ministry that worked so hard to make this such a special occasion for us families with critically ill children.

The memory of this night will always hold a precious place in our hearts!!!

Sisters At Home Together

This picture is from this morning after Hannah woke up around 10am. Lily & I had been up since 8 & all Lily was really interested in was "Ha-Nah", so she was very happy to see her sister finally come downstairs.

Today is Hannah's 1/2 birthday... thank you, Lord, for my precious 7 & 1/2 year old! And, miss Lily is officially 20 months old today. She is truly the world's easiest baby (I think I'd really be a basket case if she wasn't!!)!

Hannah had a good day hanging out with cousin Katie, who came to "babysit" with Hannah while Lily & I took a 3 hour nap together!!! Lily jumped right into Katie's arms when we came down from the nap -- so cute to see!!

Today I have been so zoned out. I know I am just so wiped out from our 5 month Aplastic Anemia Odyssey. I guess I find it very hard to "snap back" to real life after living in the hospital for such a long time. I am planning to really just lay low with the girls at home. We pretty much are not going anywhere -- except for the prom on Sunday night!!! Hannah's dress will be picked up tomorrow & I can't wait to take pictures!

Don't forget to bid on Hannah's crafts -- her first auction ends tomorrow night at midnight (5/17 @ midnight). www.bestfriendcrafts.blogspot.com
She has me check the blog every night to see how the bids are doing ... she knows who is bidding! :-)

Wendy, thanks for driving my mom to the airport so I didn't have to wake up Hannah this morning. Mom, we miss you already!!! Sandra, it was great to see you at Target .. you are a gem! And, of course, Virginia, so glad that I was in the neighborhood of City of Hope to see you. Kim, I love you & thank God every day for the gift of being your sister.

OK -- off to get Hannah to bed before midnight!!!

All God's best from our H-O-M-E,

HOME!

I am home. Jim is at the hospital with Hannah getting her discharged. We waited around all day for platelets to come for Hannah to be transfused. Literally -- we were up around 8:30am thinking that the platelets would start around 10am. I left the hospital at 6pm & platelets were not even there yet (but thank you, Nurse Vicki, for calling the blood bank every hour!). Hannah will be home very soon ... she has been resting & getting her transfusion since around 7:30pm.

We are so thankful that she is healthy enough to be coming home!!!!!!!!!!!!!

We will be laying low for the next 4 weeks. In one month we are scheduled to be in Maryland to go to the NIH for Hannah's 6 month follow up appointment. Tomorrow is 5 months since Hannah got her ATG treatment at NIH. WOW -- time just flies when you are having fun.

My mom leaves tomorrow -- so sad! We have had a great visit & she has been a tremendous help to all of us, as always! Jim & I were both glad she was here for Mother's Day -- she is truly is a mom to both of us.

I got to rock Lily to sleep tonight. That sweet little thing must have said to me 6 times while I was rocking her, "Ha-Nah". She was very aware that Hannah wasn't home yet. It just blows my mind how bonded they are despite so much separation. Thank you, Lord!

My mom & I are off to watch "Australia" ... thank you, Wendy! We will enjoy some white zinfandel & our last night hanging out!

Please keep praying for my precious Hannah's health & for us to have great days at home before our trip back East!

PS -- Chance is doing as to be expected since his bone marrow transplant at City of Hope. He is enduring very rough days but that precious boy said to his mom, in the midst of being very sick, "this is not as bad as I thought it would be." He is our hero for fighting this cancer so hard!!!


All God's best --

Getting Closer to Going Home

Starting today, Hannah went on a clear liquid diet. She is not having pain in her intestines so we are hoping all is well in the intestines & we will be cleared to go home either tomorrow (Wed) or Thursday. We are SO hopeful to get back home this week! Tomorrow is 2 weeks since we entered the hospital for this visit.

My mom & I went to City of Hope today with Lily to see Chance & his mom, Virgina. He had his bone marrow transplant today -- what a miracle!! City of Hope is just beautiful & I felt so good knowing we'd be going to such an awesome place if it comes to Hannah getting a bone marrow transplant.

I slept at home last night while my mom camped out with Hannah ... thank you, Mom!!! What a treat to be at home at least one night during this hospital admission :-) I enjoyed rocking Lily to sleep & playing with her today. She was so sweet .. like usual! She enjoys getting us to laugh & especially laughing at herself. She is one very funny little girl! She goes seamlessly from our house to Aunt Kim's. When she leaves us she waves goodbye & when she leaves Kim's she waves goodbye.

I am very tired emotionally & realizing that most likely this ATG treatment did not work. It is just so disappointing to be thinking about other options.  I was just so hopeful that this first round of ATG would work. God knows so I am comforted by that but my heart just break at the thought of Hannah having to endure a long road to recovery or any suffering at all!

Please pray for Hannah's body to remain infection free & for her to respond to this first round of ATG (it is still not too late!) and for our hearts to be directed by the Lord for what should be the next steps.

Thank you, to so many, that have emailed me with verses or messages. I am so grateful & very encouraged to know that so many people are lifting up our Hannah & our entire family!

All God's Best from Kaiser Fontana -- :-)

Hannah's New Craft Blog

Hannah has been busy doing crafts .. what else would a crafty girl be doing 24/7 in the hospital?

Please take a quick visit to her new craft blog: www.bestfriendcrafts.blogspot.com & try to imagine it as her "Lemon Aide Stand" in front of our house.

She is my little entrepreneur & she'll be thrilled to see these first items sell!!

Happy Shopping!!!!

www.bestfriendcrafts.blogspot.com

A Great Mother's Day

Hannah went all out making a huge card for me for Mother's Day. As a special gift, she recorded her voice in a device & Jim took the recording to Build A Bear & had bears made for me & my mom. Her messages in the bears to us were so dear, sweet & loving. It is a gift we will both always treasure!!!!

Daniel got an awesome surprise on the evening of Mother's Day. The high school pastor from our church, Brian Holland, came a few weeks ago with Michael Slazas (Aunt Kim's 2nd oldest son) to visit Daniel. When they were driving back Brian said, "we have to get him a laptop." And that they did. The high school group took up an offering that got the ball rolling. Kim's Sunday school class & my class took up an offering for Daniel's laptop & it was exactly the amount that was needed for a great laptop. Actually there was $4 to spare! Kim's oldest boys, Michael & Matthew, went to Best Buy & talked to them about Daniel -- they spent time shopping & loading programs & showing Daniel how to work things. Amazing! Seriously, some kids are out partying, doing drugs, you name it ... these boys are at Best Buy working a deal for Daniel so that he can have a laptop!!! Thank you, Lord, for the kind hearts of all those that donated & for the high school group that started such an awesome project for Daniel!




Hannah giving me the card she worked so hard on .. look at the joy in her face!! Priceless.


Sweet Hannah & the card


First Mother's Day with Lily ..notice her baby doll's bottle! She loves to say "baby"


Grandma & I got bears with very special messages in Hannah's voice.



Lily greeting Daniel with a kiss ... she is our little therapy baby!


Daniel opening his brand new computer!



I swear when all of this is done with Hannah I am doing something like this ... some kind of organization to bring happiness to sick kids & their families.

What joy to make someone happy!!!

Happy Mother's Day

July 2008, Hannah's most favorite vacation ever, Lake Shasta, CA



September 2008, Seeing Lily for the first time with her foster mother



I never thought it would be this great to be a mom -- even though I wanted to be a mom since I was 5 years old.

My girls are my heart - they are my gems & the treasures of my life. I am beyond thankful for them & I can't imagine one day on this earth without either of them.

I am blessed -- thank you, Lord!!

Dancing in the Hall

Hannah is here with me at 11pm & she is dancing in the hall. I think those red blood cells are doing their job!! Lily is sound asleep in the room with blankets over the pack-n-play so she won't wake up from the nurse coming in & out all night. Hannah is a happy camper that her sissy is finally here for a sleepover.

Not much to report -- the ultrasound didn't say much so we are going to repeat things early next week. We are going to try to arrange for Hannah to have Demeral before the ultrasound so she doesn't feel pain & get so upset.

I am so thankful to have wonderful nurses taking care of Hannah day & night. Truly, the nurses have made ALL THE DIFFERENCE!!!

A very special shout out to 2 special nurses: Nurse Inge, in Fresno, CA & Nurse Jeanne in Upper Darby, PA. Thanks for all your encouragement & love to Hannah through these past several months.

Happy Nurses Week!!!

All God's best,

May 7th

Live your life to the fullest & take time to "come on down".

May 7th, 2008 is a day I will never forget - taking my dear sister-in-law, Roisin, to Price is Right with her oldest daughter, Danielle.

Even though Roisin was very sick on hospice at that time, I didn't know that she would go home to Jesus exactly one month later. Roisin put on her incredible "Mom-face" & pushed herself very hard to make Danielle's Day special despite how horrible she was feeling. What a day it was - plus we bumped into Drew Carey on our way out of the handicap exit.

Today, one year later, we got great news about my nephew's tumor. A word we love: BENIGN!!!!! Thank you, Lord!!!! To say we are all thankful, grateful & overwhelmed with joy is a complete understatement! I just don't think I would have been able to stop crying if we were also dealing with David needing chemo.

Now for my sweet, precious, one & only 7 year old daughter, Hannah -- she continues to have to endure this road of Aplastic Anemia. A road that is just no fun even though I try to keep "Camp Hannah" rolling right along.

Today she had her port accessed. Yesterday they tried to do it twice but Hannah just lost it & couldn't endure them trying to get the needle in the port once more. She chose to have an IV placed in her arm for the night so she could still get her anti-biotics. Today, the surgeon that put her port in on December 4th came in & accessed her port without any problem at all. Hannah was SO relieved to see the blood return. Nothing brings her more relief!!!

This afternoon she had an ultrasound of her colon area. Hannah HATES ultrasounds. Truly, she'd prefer an MRI, CT SCAN, surgery .. pretty much, anything. I don't know why, she just does. She cried & screamed through the entire ultrasound. At one point I just felt like she was just crying to get it all out .. crying & screaming about everything cruddy that she feels from these past 5 months. Truly another one of those tremendously heart breaking moments on this journey.

Lily & I got out for a bit today. It was so nice to just "play normal life" for a few hours. She played in the water park at the mall & had fun getting all wet since it was about 100 degrees. It took her a bit to figure out that the water was there for her enjoyment but then she got into all the fun! She is now at home sound asleep in her crib...while I am here with Hannah at the hospital. I can't describe how torn my heart is .... but not being here at the hospital is just not an option.

For me, I know the emotions from the past 5 months have just been pouring out after all we have been through - and realizing that there is still a lot of road ahead.

I am a firm believer that God DOES give us more than we can handle so that we will run to Him to be our strength. Thank you, Lord, that You are my strength! I am tired. I am weary but You are carrying me through. Thank you that I can trust You to direct our path for Hannah's treatment plan. Thank you that You bring blessings on this broken road & provide for us in ways we never could have imagined.


"I have called upon You, for You will hear me, O God; Incline Your ear to me, and hear my speech. Show Your marvelous loving kindness by Your right hand, O You who save those who trust in You." -- Psalm 17:6-7a

A New Day .. A New Door

Today has been better. Thank you for all the kind comments, prayers, love & hugs from a far. I am so grateful.

Hannah has still been tired. She isn't the same "tap dancing patient" she was during the last admissions but she is still in good spirits - just more mellow.

We had a good day with our rockin' nurses taking such great care of us today -- thank you, Maria & Taralyn! Lily came to visit ... sweet little thing is just soooo adorable! That girl brings joy & happiness every where she goes. Joy & happiness are Lily's gift. Tomorrow I am going to leave for several hours to be with Lily & just pretend for a bit that "life is normal". Lily truly is my therapy through all of this. I don't know what I would do if we were still waiting for our Lily from China. God planned her with such perfect timing.. thank you, Lord!!!

I left a message today for the CEO of Kaiser Fontana. Why not go straight to the top when you aren't getting the results you want, right?! He called me back about 2 hours later & was very appreciative for my message -- yeah!! He said he would work on it & have something resolved as soon as possible. About 2 hours later I had a knock on the door -- it was an administrator informing me that the policy is now changed so that we can hang things on the door as long as they are laminated. Jim went straight to Kinko's & got busy laminating a few things :-)

My nephew's pre-op appointment went very well today. It appears that it will be a minor surgery tomorrow but we won't for sure until the pathologist looks at the tumor under the microscope. David was in on the pre-op appointment with the doctor & of course the word cancer came up ... understandably, it has really made him very nervous for tomorrow. My heart is so heavy for my sister & wish I could be there with her right now. If this wasn't all going on with Hannah, I am sure I would have been on a plane this week, just to be there, even if it turns out to be nothing. Love you, Raych & praying for precious David!!!! You all are on our hearts from here at Camp Hannah Room #1302!!!

All God's best -

Just a Rough Day

Hannah is doing ok but tonight is the fourth night in a row that she has asked to go to bed around 11pm. The first two nights I was very grateful for the "alone time" but last night I got really upset because I can see her body starting to get more & more tired from her illness. I have to think that after 5 months of low numbers her body is just exhausted from working overtime pumping oxygen through her body, fighting infections & clotting blood.

I have been so emotional today.

No, actually I have been a basket case.

My head hurts from the crying & my lack of sleep.

Jim & I talked about the next step & what kind treatment path to take. We are scheduled for a follow up visit at the NIH on June 15th, our 13 year anniversary, of all days. Honestly, there are not a lot of options but we are going to look into every possibility before we make a firm decision on what to do for Hannah. I think we are all realizing that most likely this first ATG treatment is not going to do the job for remission. Of course we are hoping & praying it will but we are gearing up for the next stage of what might be on this journey of Aplastic Anemia.

On a totally separate note -- my sweet 12 year old nephew has a pre-op appointment tomorrow for surgery that he will have on Thursday to remove a tumor. This whole thing with him is totally out of the nowhere (don't I know about that!!). I feel so bad for my mom who is out here to support us & now she is away from my sister, Rachel, in Philadelphia while she goes through this week of emotional hell. Please pray for my sweet nephew David & for my sister's family: Rachel, Gordon, David (12) & Sarah (14). David has Type I Diabetes & truly is the most tender-hearted pre-teen guy out there.


It has just blown my mind how the Lord has blessed us on this difficult journey. Tonight I had so many encouraging emails ... thank you, dear friends .. I also had this prayer that my college roommate.

"Lord, I just pray for Deb and her precious family right now. They are so precious to so many of us and I ask for your mercy on Hannah's little body. Please restore her, heal her and revive her body. I know you are more than capable and I make that request to you now. Lord, please provide Jim and Deb with the strength they need -- physical, mental and spiritual and may those around them fill in the gaps. God, you are so amazing and your love is unending. I ask that you provide little blessings for Deb this very day as she watches over Hannah. Blessings of encouragement and strength, peace, comfort and inner joy that only you can provide. We love you Lord, and may you give us all what we are lacking -- you make us whole. Protect my friend and her family. I love you Lord and I praise your name, Amen."

Thank you, Lord, for the prayers of so many! Thank you for the reminder tonight that YOU ARE GOOD. This situation is not good but YOU ARE GOOD.

Hanging out in the Hospital with Hannah Fontana

Hannah doing "school" tonight with her bears



Hannah had a day of playing but also a lot of resting. She has been having fun, fun, fun but many times saying she wants to "just rest" in her bed. She was sick to her tummy tonight & has taken about 2mg of morphine almost every 2 hours throughout the day.

Tonight she & Daniel enjoyed a moment of "Christmas on the Unit" with brand new digital cameras. It was SO great to see them having sooo much fun with their new toys! They had such a great time taking pictures of all the nurses & especially harassing the Charge Nurse, Debbie Phillips. It was hysterical -- you'd have thought that the paparazzi had arrived at Kaiser Fontana ... there were a lot of blinding flashes going off on the unit. Watch out day shift nurses, Hannah & Daniel are going to get you big time with these new cameras!

I am having issues with "the policy" (read: Unit Manager). She is telling me that we are not allowed to have anything hung up on the outside of the doors. ARE YOU KIDDING ME!?!?! I am done. Done with messing around with this ridiculous issue. Kids need to be kids & special dispensations need to be made for this very special unit of the hospital. Poor Daniel is across the hall from us & I would have loved to have had his door decorated this morning to cheer him up as he was starting another round of chemo. I tell you, it really takes a lot to get me fired up but I got so mad when the nurse told me I had to take stuff off Hannah's door. I shot out of bed like she had just injected me with adrenaline. Really .. looking back .. the poor nurse, whom I love, was just telling me what she had been told. Sorry, Cindy! :-) I am getting this thing resolved with the top administrators this week. I thought we were past this .. obviously not.

OK -- enough of my ramblings.

Please pray for my Hannah. I got an email tonight in response to some questions I had for one of the NIH doctors. I basically had asked, "if this was your daughter, what would you be doing right now?" He sent me back a very nice email but I guess I am really starting to realize that we are going to have to make some crucial decisions in the next month or so regarding Hannah's treatment plan. Getting a bone marrow transplant is a possibility but it is something we are hoping & praying we can avoid.

Vacation time is over: Come Home Bone Marrow!

Please, Lord, take away this Aplastic thing ... cure her little bone marrow to do what it is supposed to be doing! I trust you, Lord, but I do not understand why any of this is happening to my precious Hannah.

Friends from the Hospital

Our friend, Jacob, from here at the hospital, is having a bone marrow screening & blood drive tomorrow from 9am - 2pm in Ontario, CA. For details on the blood drive, check this website: http://jacobshope.net/ Jacob has a caring bridge site: www.caringbridge.org/visit/jacobshope

I helped Daniel set up a caring bridge site last night, his page is as follows:
www.caringbridge.org/visit/danielgonzales

Go check out these awesome guys & send them some messages of love & hope on their caringbridge sites. Daniel is starting chemo today that will hopefully put him into remission.

Grandma is here -- we are about to go to lunch because Claudia is coming in to spend time with Hannah. Hannah is in all her glory back here at the hospital!!! :-)

#93

Today is day 93 in a hospital but really, I am NOT counting :-)!!!! We are doing pretty good considering we are back to our way of life in the hospital. Grandma arrived this evening so we are all glad that she is here to make everything all better ... that is what a good mom does, right?! :-)

Hannah got 2mg of morphine just about every 2 hours throughout the day. Her tummy was bothering her & so were her legs. The pain in her legs is from the medication she gets to help her white blood cells increase. Tonight Hannah wasn't feeling herself but after resting for a bit & getting some more morphine, she was dancing all over & yelling across the hall to Jacob or Daniel. Most people would sleep all day with that kind of morphine, not Hannah. The morphine makes her chatty & perks up her personality a lot!

I got to see Lily this evening for the first time in several days. She had an awesome weekend away with Kim, Kevin & Katie. They had such a great time in San Diego & Lily did some very, very sweet sweet things on their trip. Maybe I can convince Auntie Kim to get on here & post about some of what Lily was up to while she was gone.
Lily gave me the longest hug she has ever given me - arms wrapped around my neck & squeezing tight for a long time. She came right to me when she saw me & honestly I can't tell you what that did for my heart to know that she still loves momma despite all the time we have been apart through Hannah's illness. I am so thankful for the way the Lord has protected her heart. She is such a wonderful treasure!

I just love the picture at the top of this post & wanted to share it. This was a few weeks ago, when Hannah went for a ride in our neighbor's "new" jeep. Darryl & his daughter, Ashlynn, took Hannah for a ride around the neighborhood. I just love the look on Hannah's face as the car was just starting to drive. I think she was in total shock that she was going for a ride in a car with no doors or top!!! Ashlynn & Hannah have been friends since birth. They are 4 months apart & live 1 house away from each other. Ashlynn's mom & I are girl scout troop leaders together (with Wendy!!!). Ashylnn is a dear wonderful little friend to Hannah -- we love you Ash & miss seeing you regularly!!

Update on Hannah & Chance's Party

This morning, Saturday, Hannah woke up with a lot of pain in her tummy. Yesterday she was on clear liquids but the doctor said she could have crackers & toast in the evening. She had both & immediately after the toast, she started to have pain in her abdomen. Today I met with another GI doctor & he showed me the CT Scan pictures of Hannah's colon. Her colon is very swollen. It is not blocked & has not been punctured but it didn't look pretty, if a colon can look "pretty". The GI doctor recommended that we add another anti-biotic (that she'd been taken off of) and that we keep her off all foods & liquids for some time. I asked him how long he thought we'd be here & he said we might have to do a couple of rounds of anti-biotics. Each round is 10 - 14 days. Needless to say, I stopped at Walmart to pick up some more craft project stuff for Hannah to do while we are here. She keeps herself VERY busy -- doing her make-up, making crafts, playing teacher to her dolls & talking to all the nurses. Her spirits are very good & today when I told her I thought we'd be here for more than a few days, she said good because she feels safe here & knows they are taking good care of her. Wow - I am so thankful that she feels that way!!!!!!! I would be beside myself if she was crying & begging to go home.

Today Jim & I got away for a bit to attend Chance's amazing birthday party (we had a great babysitter come & hang out with Hannah while we were gone). It was also a celebration for his younger brother, Andrew, who will turn 9 while Chance & his parents are at City of Hope for his bone marrow transplant. Chance & Andrew were so excited to see so many people there & to enjoy the many, many special things that were donated or purchased through the funds that were raised here on this site ... again, THANK YOU KIND GENEROUS PEOPLE FROM THIS BLOG THAT DONATED!!!!!!!!!! There was a bouncy house (with big boxing gloves for all the boys), popcorn machine, snow cone machine, margarita machine, boxing ring cake, magician, face painter, live band & awesome food!!!! It was a day that will never be forgotten & I can't think of a better way for Chance to spend his last day at home before his trip to City of Hope. Thank you to Margarita Momma in Murrietta that donated the machine & the ingredients. Thank you to Estrada's Mexican Restaurant in Escondido that provided all of the amazing food for dinner (Kim, you missed the best beans EVER!). Thank you to Homemade Cakes by Carmen for donating the beautiful boxing ring cake - the boys loved it!!! If you live locally & need an awesome cake, call Carmen: 909-593-4769

THE CAKE


SURPRISE!!



MAGICIAN



HANNAH MAKING BRACELETS


ME & JACOB'S MOM, MELISA. MAKING THE BEST OF OUR LIVES AT THE HOSPITAL!



I am off to bed. Hannah is sound asleep & looking so cute. She was tired early tonight, so I have enjoyed some "alone" time here in our room. My mom arrives tomorrow ... and Lily gets back from San Diego! Katie has texted me some adorable pictures of Lily in the pool at the hotel & hanging out on her weekend away in San Diego. I guess you know the true state of your life when your 19 month old gets away more than you do!!! :-)

All God's best!

Anniversary of Sorts

Today is anniversary day:
7 months since Lily arrived home from China
6 months since Hannah got our dog, Joy
5 months since Hannah was hospitalized for Aplastic Anemia.

I have to say it is very strange to be back in the exact same hospital room (#1302) that we were in 5 months ago today when Hannah came here for "bruising issues". What a whirlwind these past several months have been!!!

Hannah did test positive for C-Diff. This keeps us in the hospital until it is cleared up. Every day she gets tested so we will just have to see how long it takes for the C-Diff to leave her system.

Hannah & I slept until after 1pm today. The nurses couldn't believe it because I guess there was a lot of commotion in the hallway and we slept right through it all. That is what happens when you go to bed after 4am! Hannah slept with bright red lipstick on & woke up with make-up all over her sheets. She has been working on autograph pages for anyone that would like to receive her autograph - yes, I am serious! She got the idea from the Vanessa Hudgens autograph that she received. Hannah has signed her name on papers & wrote "All my love", just like Vanessa! I have a little Hollywood-star in the making here :-)

Lily is in San Diego with Aunt Kim, Uncle Kevin & Cousin Katie. Kim & Kevin are speaking at a marriage retreat & they took Katie & Lily with them so that Jim & I can be with Hannah and rest up this weekend. Thank you!! I know Lily is loving her time with Auntie & family!!!!! Katie is the best little 12 year old mommy ever! She carries Lily around like her very own baby .. it is so cute & Lily LOVES them all!!

I am really starting to wonder what the NIH will say next month when we go for Hannah's bone marrow biopsy. Not sure if they will recommend another round of the ATG treatment, chemotherapy or go straight for a bone marrow transplant. I guess the other option is to keep waiting but my gut feeling is that the ATG treatment Hannah got in December is not working enough to bring her into remission. I hope I am wrong ... but that is just my gut feeling.

OK -- blessings from Kaiser Fontana & thank you for all the prayers for my sweet Hannah to be healed!!! I am so thankful for all the caring, kind people that encourage us & sustain us on this journey. God has been so faithful to us!!


"Let us hold fast to the confession of our hope without wavering, for He who has promised is faithful. And let us consider how to provoke one another to love and good deeds ... encouraging one another." - Hebrews 10:24,25

Good News

Today we had good news from Hannah's hematology doctor, Dr. Horvath. She took Hannah off most of the IV anti-biotics but kept her on just one for right now. Also, she said that tomorrow (May 1st) Hannah can start on a liquid diet. She wants to keep Hannah here to we can observe how she is doing but she feels good that Hannah will get through this quickly. What a nice surprise!!

Hannah got platelets & red blood cells last night. I was very concerned before I went to bed because Hannah's hemoglobin level had gone from 7.7 to 5.8. The doctor said that she felt it was just a diluted reading because Hannah had just received platelets .. Thank you, Lord!!

Hannah has been in good spirits -- enjoying some trick things that she brought to the hospital (gifts from Aunt Rachel) trick gum, silly teeth & a whoopie cushion. :-)

The nurse today guessed that we will be here 4 days .. that would be the shortest visit for us ever in the hospital. Hopefully it will work out to go home soon. I don't think we will bust out in time for Chance's party .. big time bummer!

My mom booked a ticket & is arriving on Sunday -- thank you, Mom!!!!

Hannah just started a movie (2am) & just finished doing her make-up. Too cute to see her back in her "hospital party mode".