Full Day at Clinic & Fun Night at Home

We had a nice 7 1/2 hours today at the clinic. Really. We had a mini-visit in the hall with Jacob & his wonderful mom, Melisa. Jacob & Hannah played tag in the empty hall for a bit. It was the first time in a long time I have seen her playing freely not hooked up to an IV. She was so happy just hanging out with a kid her own age. Very cute.

Hannah did need platelets but her blood tests came back at wbc 1.9; platelets 15; hemoglobin 9.0. Very encouraging numbers!!!! I had a brief talk with Dr. Horvath. She looked at a slide of Hannah's blood under the microscope & was very encouraged to see activity at the bone marrow level. It doesn't mean Hannah is out of the woods by any means but she was very encouraged by what she saw. I told her I was very hesitant to get excited about things & she said, "get excited ... this is good news and besides, she is out of the hospital!!!!" So true. I did let myself get excited & had a nice cry right there in the hall with Dr. Horvath. Truly if I could pick Dr. of the Year .. it is her!!!

Because it took S-I-X pokes to get the needle to work properly in Hannah's port (she was numbed but totally freaked out about getting poked!) I asked if they'd do her Nupegin in the IV rather than a shot tonight at home ...they did!!! Also, Hannah now only needs to have that shot every other day so she is off from shots until Sunday!!!!

We got home just after 6pm tonight & had a pizza & Wii fun with the Slazas'. It was just priceless tonight to see Hannah playing & having so much fun -- lots of laughs & even a few "costume changes". Kim & I sang a duet on the Wii Sing It ... some song from High School Musical ... let's just say, we won't be joining the church choir any time this side of heaven :-)! Actually, besides Hannah & Ryan -- I don't think any of us are joining anything any time soon. I do have video of Matthew doing a really good bit of a Vanessa Hudgens' song - we will see where that is played at the rehearsal dinner before his wedding day :-).

Needless to say, I am feeling soooo much better!!! I think that day in bed was exactly what I needed so this cold didn't drag out for 2 weeks.

The above pics are from tonight. We had such a great time just being H-O-M-E!!!

Now, I am going up to get into my very own bed, in my very own room, in my very own house, near my very own bathroom with my very own real towels that are not "hard-as-a-rock paper towels" and rest without the constant-non-stop-24/7-incessant sound of an IV machine working while I am trying to sleep!!!!!

Did I mention that I am very happy to be home!?!

Thank you, Lord!!!


Pray for Chance -- he is at the hospital in Fontana right now receiving his 3rd round of chemo. His mom is so sweet & my heart just breaks for this road they are walking.

If anyone would like to make cards for the other kids that we know locally, please feel free to send them to us & I will make sure the kids get them!!!! This would be great for your Sunday School class, school class, boy scout troop or girl scout troop. These kids need our love & encouragement as they journey tough roads with all too often chemotherapy.

Chance is 10 years old -- diagnosed just before Christmas with a very advanced cancer.
Jacob is 6 years old -- receiving maintenance treatment for recurrent leukemia.

Remember ... ALL KIDS LOVE MAIL ... make a kid's day & send these precious boys a card!!!

c/o Law Offices of James Eriksen
PO Box 4257
Rancho Cucamonga, CA 91729-4257


PS -- AJ is out of the hospital in Philadelphia & back at home in New Jersey. His blood count numbers are awesome!!! He went in today for transfusions & didn't need any b/c his numbers weresoooo good -- wow!!!! What an answer to prayer for this family that just started down this Aplastic Anemia road.

Oh & last but not least -- Congratulations, Alan & Joyce, on the birth of your most precious 3rd baby boy - 1/29/09!!!!!!! We can't wait to meet baby Jacob!!!!!!!! 7 lbs 10 ounces, 21 inches long ... born NOT in Fontana :-) Rain check for the In & Out, ok? Love to you all!

P.J. Day at Home

It is 1am & my alarm is set for 8am (eeek ... too early for me!!) to get Hannah to the clinic for her follow up transfusions. I know she is going to be pretty low on platelets since her "plates", as we call them, were at 29 Wednesday morning. She seems to be dropping between 11 - 15 per day.

Today was a total kick back day at home. Hannah & I never got out of our pj's!!! Lily did but only to walk around the house for hours in just her diaper. She was so funny - literally throwing the clothes away from me that I was trying to put on her. She was just not interested in being clothed today. :-)

Tonight, we had some of the food that I had purchased for our Chinese New Year's dinner ... it was a mini-belated Chinese New Year celebration for us Eriksen's. Our first Chinese New Year with miss sweet Lily .. she is soo sweet & such a treasure!

Hannah is doing well -- she is still getting a shot once a day at 6pm. My mom gives it to her even though I did get trained on it. Hannah prefers Nurse Grandma to give it to her ... yes! We pay $1.00 for each shot ..one dollar. The actual cost if we had to pay out of pocket is $217 per shot!!!!! Thank you, Lord, for this insurance!!! Hannah is doing OK with the pills. She just has to put her mind to it & she can take them fine. Tonight took over 40 minutes to take 3 pills (6 swallows because the pills were cut). 40 minutes is way too long for me but by the end she really seemed to have conquered things & took the last one without a problem. Yes, Kimberly - I'd like to know how Rebekah does it without problem. We did the Hershey's syrup tonight ... I can't remember whose suggestion that was, but thank you! It did help -- ironically 40 minutes is an improvement!

I feel like I have been in a perpetual state of "I need to unpack that suitcase" since we got home from our wonderful trip over Thanksgiving to the mid-west. Literally, one of the suitcases from that trip went with Lily over the Slazas' & I just saw that in the inside pocket is a ton of stuff I brought back from the Indy trip. Oh my ... it is the end of stinking January!?! Jim & I both feel like the past 2 months have just flown past us. As a matter of a fact, one of my calendars here in my mini-office is still set to November!?!

We finally got a teacher arranged for Hannah!!! Yes, my daughter has been completely uneducated these past 2 months. Of course, not in Hannah's eyes -- she told me today that she knows all the lines to the Indiana Jones movie - now if that isn't something to be proud of, I don't know what is? :-) She might not know "this week's spelling words" from 1st grade but she can spell a lot of medical terms & her knowledge of blood cells, disease, germs, etc is off the charts. I know she will be just fine from missing the past 60 days of school -- she has learned a lot of science stuff (and Indiana Jones but we won't mention that to her teacher!).

Thank you to everyone that keeps sending Hannah cards & pictures -- it is soooo appreciated!!! You really have no idea how much it means to all of us & to Hannah. Also, thank you to long time friends that just sent some awesome pj's from Land's End to Hannah ... thank you, thank you!

And, to my sister in Philly, that reads this blog every morning after coffee -- I love you, Rach! I wish we lived closer. I know if you were here you'd be doing everything you could to help with every little thing -- even though you have lots & lots of major things you juggle in your own life. How did you, Miriam & I ever end up living in different states spread a part by miles & miles? I have no idea. We really would do well to just pick a place & all live near each other ... oh, and make room for Kim - she says if I move, she is coming too!

I better get some sleep. That 24 hour nap will only last me so long .... I am feeling better just still sneezing & coughing into my sleeve ... and washing my hands like crazy!

Please keep praying that Hannah's blood count numbers will improve & the vacation will end for mr. bone marrow!

All God's best from "Ranch Hannah" --

Home

I came home late on Tuesday afternoon to be with Lily. I had come down with a cold at the hospital on Monday night so I wasn't feeling that great. I then laid down with Lily to try to rest & she wasn't so interested in resting. I had so much cold medicine in my system that I really wasn't able to do much with her so I called Kim. Lily went over to Kim's & I went to bed. Actually I think I went into a coma ... I slept for 24 hours straight. I woke up 3 times for about 5 minutes each time but besides that I was completely asleep. Jim slept out at the hospital with Hannah while I was crashed out at home. Today, while I was sleeping at home, my dad left to fly back to Philadelphia (my mom is still here!!!) and Hannah got discharged from the hospital!!!! When I woke up this evening, Hannah was in my room dancing around & singing. I told her I thought it was a dream that she was really here at home. This visit she spent 15 days at the hospital - unbelievable.

We are all home tonight. I am sneezing like crazy & not feeling good at all but so thankful that I don't have the flu. That is the l-a-s-t thing Hannah needs. Of course, a cold isn't good either but I am not kissing on Hannah so hopefully she won't get what I have.

Mac - I am so sorry you didn't win the auction for the pot holder!!! I am sure Hannah will be glad to work out a custom order for you :-) Email me at eriksenvp at gmail dot com

Carrie - you have a point about Rob C. - if the check doesn't arrive in the mailbox soon I will posting his mug shot here :-)

I am off to get Hannah in the tub & into bed by 11pm!

All God's best from home ...

And the Winner is ....

Rob C. from CT for a whopping $85 dollars!!!!!!

I went to school with Rob & his wife, Tammy back in our Chicago days. Oh my goodness .. Rob, you are crazy .. but I'd do the exact same for your sweet daugther if she was sick. Thanks for making Hannah's night (more like, Hannah's month!!). She is very, very excited -- to say the least!!!

Hannah had a temperature this afternoon of 100.7 so I don't think we are home any time soon. For now, we are about to put on Home Alone (1ish am). Lily is sound asleep in my bed!

All God's best from Kaiser Fontana --

Good News, Bad News

Bad news: one more night here in hospital.

Good news: Hannah's numbers are doing really good today. Her ANC is 1,090!! We have never seen a number like that since all of this started!!! Her white blood cell counts are at 1.5!!

I am about to go back to sleep .. Hannah is coloring with a sweet volunteer here in the room. It is adorable to hear Hannah chatting away about life, blood cells, girl scouts & Big Fat Liar -- among other things :-)

Lily is on her way home with my mom -- thanks, grandma!

Happy Chinese New Year!

Hannah & I are still awake but Lil is sound asleep in my hospital bed ... and looking so adorable, I might add! Hannah wants everyone to know there are less than 24 hours in the bidding of the pot holder. Rob C. in CT, get your bid in now!! :-)

Hannah threw up tonight out at the nurses station while I was putting Lily to sleep. And now she feels like she might again so we will see if the plan stays the same to go home tomorrow or not. The nurse thinks the dr. might keep us here. We'll see what happens. The plan is ever changing :-) Either way, I am stocked up on Chinese food so we can do a bit of celebrating ... our 1st Chinese New Year with Lily!!!!! Thank you, Lord!!!!!!!!!!! She is such a gift!!!!!!!!!!!!!!

Hannah will be getting shots each day at home. My mom gave her the shot this evening here at the hospital and let's just say, if you live near Fontana you probably heard Hannah around 7pm. The shot didn't hurt (or so she tells me now) but I think it was just all the emotional exhaustion of being poked at, etc. Please pray that giving her these Nupegin shots will go better -- she has to have one a day in order to be home and the Nupegin is what is helping her white blood cell count go up.

Today marks 3 years since our paperwork for Lily was logged into China's adoption system. Back at that time, I thought we'd be home with Lily during the summer of 2006. Little did I know what God had planned.

Since Hannah got sick, I keep thanking God that He allowed me to enjoy my time with Hannah as my only child while I was not-so-patiently-at-times waiting for Lily. The endurance of waiting for Lily taught my heart to just trust the Lord and to believe that He has my best interests at heart. These past 7 weeks of Hannah's illness has brought all of it full circle for me. I would be kicking myself if I had to look back on 3 wasted years of "missing time with Hannah" because I had been so anxious about "where is Lily?" Don't get me wrong -- the wait for Lily was agonizing -- but it taught my heart things I never would have learned if she'd arrived in the summer of 2006.

I am now, once again, learning to trust and learning to be patient in God's perfect plan. And I am learning to relax in the waiting -- the waiting of Hannah being well. God knows. He hears the cry of this momma's heart and the prayers of so many. So, here I am in the hospital with my very sick child and we are still enjoying life. What is not to enjoy? Wheelchair rides can be fun, going potty into a measuring thing is an adventure and putting your hands up while riding the gurney to the Operating Room makes it feel much more like a roller coaster ride than just your 2nd trip to the Operating Room.

All we can do is live life to the fullest here in this terrible situation we find ourselves in. We are having fun & laughing --- so hard at times that I really should just buy a package of Depends :-).

So -- Happy Chinese New Year!!!

And to Lily's birth mother -- you are in my prayers particularly on this special day in China. I pray that somehow the Lord gives your heart peace in knowing that your precious daughter is loved & treasured. I will never know you on this earth but I pray that you have come (or do come) to know the unconditional love of Jesus and that we meet in heaven. From the bottom of my heart, and there really are no words to say it -- but, thank you. Thank you for allowing Lily to have life!!!!!!!!!!! She is such a gift!!

TOMORROW: Chinese New Year, Lily's 3 Year Anniversary LID & Hannah Going Home!!!!!!!!

We just saw the doctor & Hannah's white blood cell count is at 1.2!!!!!!!!!!!! The reason it has gone up is from a drug she has been getting through her IV, Nupegin. The doctor is encouraged that there is something in her bone marrow responding to the Nupegin. If we stop this medication her wbc will drop again so I will be giving her shots every day at home to keep her white blood cell count up. We will come back to the clinic on Thursday for check up & transfusions.

We are here in the hospital watching a Sesame Street movie (thank you, Connie!) ... Lily is loving the music ... it is so cute!!!! Hannah will be getting a transfusion of platelets today. My mom is coming soon so I can take Lily home ... but I will be bringing her back tonight for another sleep over. She did awesome all night sleeping in the bed right next to me!!!

Pray that Hannah's numbers keep up & we can all stay home together for a while!! Pray that she will be protected from infection & that her bone marrow will come back soon. I think my mom & I are going to take Hannah to the American Girl Place for a surprise outing - of course, during the week when not many people are there with their winter germs!!

Thanks for every one's support & prayers ...

P.S. - Kathleen - I did remove the tag after this picture was taken :-)! Thanks, again!

Slumber Party - Kaiser Style

Hey, hey from a room with two adorable sleeping beauties!!

Lily is sound asleep in my hospital bed -- where she is going to stay all night even though the pack-n-play is set up right next to my bed. "Therapy for mommy" is to sleep next to this precious princess!!! She looks so sweet!!!

Hannah is sound asleep next to her hospital bed in the pull out chair. She has been sleeping there the past 4 nights -- I guess she needed a "change of scenery" since she hasn't left the hospital in almost 2 weeks. She is sound asleep, as well & looking so precious!

Today Kim, my Mom & I we went for sushi (oh my heavens ...YUMMMM!!) and then for massages. I don't know how you spell "Calgon" these days but is has to be S-U-S-H-I and M-A-S-S-A-G-E-S! Jim hung out with Hannah at the hospital for a movie-thon. I have no idea how many times they watched it but Hannah is now addicted to the movie Big Fat Liar. She now basically just switches between Big Fat Liar & Indiana Jones :-) Lily was with cousin Katie & Uncle Kevin ... she was enjoying some being spoiled (she deserves it!)

Hannah's white blood cell count was up to .9 today!!! That is a number I don't think we have seen since all of this started -- so for that I am SOOO thankful!!!! Thank you, Lord, that her white blood cell counts are rising right now!!!


Ok -- crazy lukers on my blog -- Hannah was already asleep when I read that the current bid is $80 for the pot holder. The news of the current bid will certainly wake Hannah up with a smile in the morning! Can I please remind all bidders, this is a pot holder you are bidding on. It doesn't cook for you .. doesn't clean the dishes ... nada ... it is a pot holder!!! But then again, it is made by the hands of Hannah Eriksen so maybe $80 is a bargain basement price :-)!

I am so happy tonight to have both of my girls sleeping here!!!! My heart, as you can imagine, has been so completely torn living here at the hospital & not having Lily here with us. I just decided enough is enough & Hannah is doing well enough (not in lots of pain & no more serum sickness) that Lily can come. I don't know how Lily will do in the morning because there isn't a lot of play space in the room but we will figure something out. I have the stroller so if I need to, I can go walk the halls with her when it is nap time.

So tonight is a great night ... numbers going up & both of my girls with me!!!!! Thank you, Lord!

This is the day the Lord has made, let us rejoice & be glad in it!!

3:20AM & We Just Started Another Movie!!

The party over here continues .. no wonder Hannah loves being at the hospital. I feel like we live on the Space Station in many ways because our sleep schedule is so completely upside down. Of course, what does it really matter? It is not like she is getting up for school or anything. The most important thing to me is that she has many wonderful memories from her time in the hospital & let's just say -- she will!!

Today went much better with the pills because some how the doctor switched one of her main medications to liquid form. Thank you to everyone that posted suggestions on how to help her with the pills. I know I will be using those tricks in the days ahead because she still has to take a few pills a day. It is huge that her main medication is now in a liquid form. The liquid medication is put into Apple Juice & she has done great drinking it... thank you, Lord!!!!!!!!!!!!

Hannah is over the top excited with the bidding that is going on for her pot holder. Seriously, people -- I was thinking it would sell for about $10 -- instead, the current bid is at $75 -- hello crazy, blog readers!!!?!?!

Hannah's numbers are better today. Her ANC is up to 292. Her white blood cell count is at .7; platelets 48; Hemoglobin 8.0 She is still running temperatures into the 100 range. I don't think she will be sent home until her temp. stays under 100 for a bit. I am hoping we can go home early in the week but that is just what I am thinking about...I haven't heard anything from the doctors.

It has been so wonderful to have my parents here ... how did I ever win the lottery with my parents???!!?! I have no idea but they are amazingly supportive in every single way!!

My mom, Kim & I are going to get massages tomorrow afternoon (thank you, Joyce, for my gift card!). Hannah & I are planning for a "girls sleepover" tomorrow night with Lily!! Fun, fun!!! The pack n play is going to be set up right next to my bed & I can't wait!!! :-)

I have to give a huge shout out to my Sunday School class, "Fusion", from Pomona First Baptist Church -- you guys are so awesome!!! Thank you for all of your support. Prayer -- meals -- gifts and endless love!! We are so blessed by each of you. Thank you for all the awesome meals. It has been great even for my parents to have the meals brought since they are helping us in so many ways. My mom doesn't need to think about cooking dinners, so, thank you! Jason & Brenda - the cupcakes you sent in for Hannah to share with the other kids on the floor were a HUGE, HUGE, HUGE hit!! You have no idea!!! She even brought your cupcakes to give out to the technicians in the CT Scan area. I don't think it is very often that the guys in CT Scan have cupcakes brought to them :-)

I am thankful to the Lord for all He has done to sustain us in every way on this journey and for the very joyful heart He has given to my Hannah. She is such a treasure and even though we are "stuck" in this hospital room, I enjoy each moment (well, not when it is pill taking time) with her. One of the nurses & I were talking the other day & I said to her, "what's to be depressed about? I am not in a funeral home." Even though this is by far not the best of life's circumstances, God gives us joy on a very dark road. God is certainly the fortress for my heart -- without Him I'd be a complete basket case 24/7.

Please continue to pray for Hannah's healing ... I keep thinking about her back in the swimming pool one day enjoying life as a "normal" kid!

All God's best from Kaiser Fontana --



P.S. Thank you for praying for AJ -- he has completed day #3 of ATG treatment & he is not having as many side effects as he did on his first day of treatment. He has one more day left and then he starts waiting, like Hannah, to see if his body responds to the treatment. Pray for his healing & for his family as they journey this tough road.

Thanks so much, everyone!

Let The Bidding Begin ...

Hannah & I would like to put her home made pot holder up for auction here on the blog -- isn't it lovely?
The bidding starts at $2.00 (two dollars).
The bidding ends at 11:59pm on Monday January 26th.
Please post your bid in the comment section.
Highest bidder WINS.
Payable in US dollars ... preferably $1 bills, as that is what Hannah collects :-).

Pills "only" took 2 hours tonight .... Hannah has become more & more apprehensive with taking her pills over the last several days. Any ideas for how to get her to take these things twice a day???
Liquid medication is not an option & neither is the IV for these set of pills that she must take for her treatment.
I am open to any suggestions and I am not opposed to bribery & begging!!

Thanks to all that continue to send Hannah cards -- she LOVES it!! Thank you, Kathleen, for the home made hats .. they are beautiful!!!! I wore Hannah's over to the grocery store tonight :-)

Please pray for sweet 9 year old AJ in Children's Hospital of Philadelphia -- he is also fighting Severe Aplastic Anemia. Tomorrow is day #3 of his treatment (similar to the treatment that Hannah got at the NIH). I feel so much for this boy & this family -- I guess because I am just steps ahead of them on this difficult Aplastic Anemia road.

All God's best --

PS -- Hannah is out at the Nurses Station right now having the nurses train her on things. I swear she is building for a career in the medical field one day!

Life for Us Today

Here we are camped out in Room #1304. Hannah is watching Indiana Jones, Temple of Doom .... shocking ..ha,ha!!!!! :-)

She is having a much harder time taking her pills .. we have had a lot of tears tonight because of the pills & it took about 2 hours to get 5 pills down. Not fun for her & not fun for me.

Tonight I did scrapbook pages of my girls. The page of Hannah is from last night -- she spent a lot of time doing her make-up after her bath with Nurse Suzy. We called it the "Salon Suzy" because she got Hannah's hair so nice & clean & all brushed out!! The other scrapbook page is of Lily from today at home. It was so nice to have time with her today ... she is such a sweet, sweet, sweet baby and so fun to be with! What a blessing this little one is to our lives!!!

My mom brought Lily to the hospital this morning for a "longer" visit (45 minutes or so) -- Hannah LOVED it!! They walked the halls for a bit here in the Peds ward. If Lily could have she would have jumped on Hannah's IV pole to ride down the hallway!!

Grandma was at the hospital for many hours today with Hannah. Claudia came & spent time doing crafts with Hannah while Grandma, Lily & I went to In & Out. Lily LOVES putting fries in the ketchup .. she really just likes the ketchup & the fries are a bonus. At one point Lily was literally drinking the ketchup!

Hannah had a "surprise" visit from her one-time babysitter, Jenn. I know that brightened her day -- thanks, Jenn!
Jim came & spent the evening here with Hannah while I was home with Lily.

Hannah got platelets this evening so we will see what her numbers are in the morning. Her white blood cell count was at .5 today. I now know not to get too excited -- sounds terrible to say but with Aplastic Anemia it is a lot of roller coaster riding with blood counts .. numbers go up ... numbers go down. We just hope & pray to see a continual trend of upward movement. At the same time, the doctors are not expecting to see much yet. It is just too early to expect a response to the treatment. But, I also know the Lord can do anything and we are praying for a miracle for Hannah's bone marrow!! I can't wait to say "the bone marrow's vacation is over!"

I have to constantly tell myself that this is a long road & just take one day (or one moment) at a time. As Kim tells me, "each day is one day closer to Hannah being well." So true!

Please pray for

- pill issues.
- Hannah to continue to have a happy heart (today she told me she hopes she is here for her 8th birthday, 11/15, because she loves it here?!?! Maybe we are making this place too fun!?)
- Our entire family as we walk this road ... all of us have hard times at different times. This is not easy for any of us but we are doing all we can to make the absolute best of things & keep things as happy as possible!
- Hannah's bone marrow to get back to work.
- praise for Hannah's CT Scan being clear. Our friend, Dr. Alan Taur, looked at the scan last night with one of the CT techs & both of them thought it looked fine. At first we thought there was something going on in her lungs but both of them thought it was just from Hannah not holding her breath during the CT Scan. Thank you, Lord!!!
- pray for the other kids we have met here on the ward - especially Jacob & Chance. Both boys are fighting hard with very serious illnesses.

Did an Inauguration Just Happen?

I know it might seem like the whole world just stopped to see the inauguration but here in the hospital it was just a regular day - whatever that is when your bone marrow has gone on a hike! Hannah had a better day & I got home to spend lots of time with Lily. We even napped together for about 3 hours in my bed at home ..aaaahhh!!!!

I know a lot of you are looking for information about donating blood for Hannah -- thank you. Not much information just yet -- sorry!!
I am working on coordinating things but I just haven't had time to get things together. I have asked for the forms about 5 times but have never received them. I just emailed my friend, Alan, that works here in the hospital to see if he can help coordinate things ... and maybe even see if we can just do a blood drive for Hannah so everyone can give at once & in one central location. Don't think I am ignoring all of you that want to give blood -- it will just take a bit to coordinate. All of Hannah's potential donors have to first be blood matched & get CMV clearance. You must be CMV Negative for Hannah to be able to get your blood. Regardless, I am hoping we can do a big blood drive & get blood for Hannah & for many others!! Believe me, your blood is a gift to anyone that needs it!!!!!!!!!!!!!!!!!!!!

Hannah's temperature has been between 99 - 101.2 all day /evening. Her doctor is on top of everything & is adding some more medicines to fight whatever infections are going on. I am so grateful that I was able to leave today without Hannah crying. Her emotions seem much better today -- so thank you for praying!! Keep praying!! Last night she made a bunch of pictures for her sister -- one of them said, "To Lily- the best sister EVER". It was so cute!

Hannah told me about 40 times tonight, "I love you, Mommy." It makes every moment worth it to hear that over & over -- thank you, Hannah :-)!!!!

If I remember correctly, Corrie ten Boom said, "there is no pit too deep that God's love isn't deeper." We are in the pit of Aplastic Anemia right now but truly God's love is deeper & His strength is right here at every moment in this pit!

My college roommate, a cancer survivor, sent me these verses this evening -- I will leave you with these:

Psalm 55:22 (NKJV)
"Cast your burden on the Lord,
And He shall sustain you;
He shall never permit the righteous to be moved."

Psalm 92:1-2
"It is good to give thanks to the Lord, and to sing praises to Your name, O Most High; To declare Your loving kindness in the morning, and Your faithfulness every night."

A personal note to a mom named Stephanie , AJ's mom

Stephanie -- I don't have your email but I read your comment about your precious son, AJ, just being diagnosed with Severe Aplastic Anemia. First, I am so sorry to hear you are walking this road. It breaks my heart & I don't even know you.

I hope you will see this post before AJ starts his treatment tomorrow. Ask the doctors to pre-medicate AJ with Demerol before they start his 1st ATG. It was a big mistake that we didn't have that done on Hannah's first day of treatment. The Demerol was given about 50 minutes into her first treatment & it made a huge difference in the amount of shaking that Hannah started to experience 40 minutes into the ATG. Be prepared for shaking .. I was in shock. Maybe Children's Hospital already pre-medicates with Demerol. After Hannah's 1st treatment, we always had her pre-medicated & from then on the shaking wasn't an issue. I will be praying for AJ tomorrow as he starts his treatment. Please contact me directly on email if you need anything or have any questions: eriksenvp at gmail dot com

You are not alone on this road!

And, please, everyone that just read this personal message to Stephanie - take a moment & pray for AJ, his family & AJ's bone marrow to come back from "vacation".

Rockin in Room #1304

Hannah had me download some Cheetah Girls music tonight & now she is rockin out to Cheetah Love while coloring ... it is past 2am!

She had to have a CT Scan this afternoon & let's just say after all the emotional trauma with the needle in her port, the whole thing just about put her over the edge. She lost it & she has had a CT Scan before and knows it is not painful at all. She has just had it.

Around 3pm I left to go have lunch with my dad, she had a complete meltdown -- and my mom was with her. Poor girl just hit her breaking point today. I felt so bad for her!!

I had planned on leaving to go see Lily today but I just knew Hannah couldn't handle it if I left today. I talked it through with her & we agreed I would stay today (Monday) and go see Lily for the day on Tuesday. I haven't left the hospital to see Lily since Saturday & I know I have to get out but it has been hard because Hannah has been asking me to stay. Also, it is hard to leave her knowing that things can change quickly - tonight her temperature went back up to 101.2 ... out of no where! When her temperature goes up, understandably, she feels miserable and like any kid, she wants her mom!

My heart is very torn. I want to be in 2 places at once and unfortunately this hospital room is no place for Lily to be camping out.

I won't post Hannah's blood count numbers each day because it really doesn't matter at this point - they are going to go up & back down again. It is just the reality of Aplastic Anemia -- a bit of 2 steps forward, 5 steps back, etc. Plus, the fact of the matter is, it is a L-O-N-G road to recovery. So, it is not like we are going to wake up tomorrow & have her blood count numbers up to normal. This is a very slow process.

Two specific prayer requests:

- Hannah's heart to be comforted as she has a lot to endure. Pray for her to have emotional strength during all of this. This is a very long road & we are just at the beginning of this "marathon". Pray that she can handle all the different things that happen each day.

- For Lily -- that her heart will continue to be united to ours in a supernatural way. I know the Lord can do anything! Please just pray that the Lord multiply our time when we are with Lily!!

Just the Facts

* We slept til noon.

* Her platelets are at 81 (because she just got a transfusion). Her white blood cell count is at .3. Her ANC is 74 .. that is a nice improvement but still very, very, very, very low!

* Hannah's needle got dislodged b/c the IV tubing got stepped on while she was walking in the room .. she immediately knew that this meant the needle would have to be changed right away ... very, very upsetting!!!

* Hannah was beside herself while the nurses got organized for the needle to get changed. It broke our hearts to see her so sad!!!!! Really, these needle change experiences are far worse than anything she has had to deal with. Going for a bone marrow biopsy is so much easier for her. Don't ask me why, just the way it is for her.

* Jim & I are going to talk with the doctor about our options for having a different kind of port implanted (a hickman port --I think it is called?) There are different advantages / disadvantages to that port but the big advantage is no needle needs to be inserted / reinserted into her skin each week (or each doctor appointment). These needle changes are literally the most emotionally traumatic thing she is (or has) EVER gone through. If I can do anything to remove some of this, I will .. even if it means we got back into surgery for a new & improved port for her.

* Her temp climbed back up past 101 today ... so the nurse drew more blood for blood cultures ... we will see if anything happens but her body is certainly trying to fight off something.

* Her mouth sore didn't cause as much pain today but it is still bothering her -- I think she only asked for morphine once today (Nothing like having your 7 year old look over & say "Mom, could I have some morphine?" .. so strange to hear!!)

* Hannah had a visit tonight from Camille W., who came to teach her how to knit a hat. Hannah's temp was above 100 so she wasn't as perky as usual so Camille also read 3 books to Hannah -- which she really enjoyed! Thanks, Camille!!!!

* Lots of people have responded about blood donations, bone marrow, etc. It is on the top of my list to discuss with the doctor tomorrow. As soon as I have details for instructions on how to donate blood specifically for Hannah, I will post it here on the blog. .. thanks!!

* Hannah's grandparents (my parents) arrived tonight. We haven't seen them yet but they are at our house sleeping .. .my mom will be here as soon as we wake up here tomorrow!! It will be sooo great to have them here. My parents are amazing!!! Anyone that knows them knows what I am talking about. I won the lottery with parents .. caring, kind, giving, generous, down-to-earth, practical, fun & unconditionally loving to each of us! If anyone knows of a place for rent in the Rancho Cucamonga area, please let me know. My parents should look at it while they are here ... I want them here for longer than just this visit!!! They are soo helpful with everything!

* Hannah is coloring & watching Shrek. I am going to sleep .. so tired from late, late nights even if we do sleep til noon!

* I drove to Costco today to pick up some pictures (and leave the hospital for a bit!) On the way back I was thinking about how God has been my Strength through every bit of this trial. I don't feel like I am "trying to be strong" or "trying to put on a happy face". Believe me, I don't always put on a happy face. I certainly let God know my frustrations, anger, hurt & pain. He knows it any way so why shouldn't I just share it with Him?! :-) There is nothing I can hide from Him so I make it clear that I don't understand this plan & that none of Hannah's illness makes any sense to me. At the same time, I do trust Him. I do trust that He uses ALL THINGS TO WORK TOGETHER FOR GOOD! I believe Him. I promise, there is nothing in my own being that is strong - not one single ounce of me is strong!!! I can't be strong for me, for Jim, for Lily or for Hannah -- it just isn't in me. I have nothing to offer but I do have peace during this time, as it is truly the Lord sustaining me & giving me His Strength!!

So, don't think I am "being so strong" ... HE IS! Praise God that He fulfills His promise to be Ever Present in times of trouble!!

All God's best from Camp Hannah #1304

blood draw from arm

Hannah's blood draw in her arm is done. It went ok -- thank you for praying. It was not as traumatic as I expected .. thank you, Lord!!!! Hannah is trying to eat dinner right now and then hopefully we will be getting some sleep ... :-)!!

please pray

hannah is having a hard night... her temp is at 101.3. she is miserable right now ... and they are about to draw blood from her port & from her arm (which is very traumatic for her!).

if you are reading this tonight -- please pray for God's grace right now!

Blood Donations & Numbers Today

I just found out that the blood donations for Hannah can only be made here at the blood bank at Kaiser Fontana. No out-of-area donations can be made specifically for Hannah. I have to get donation forms for the Hannah's blood donations -- please make sure you get a form from me before you come down to Kaiser. I should have them by Monday. A nurse administrator is working on it for me. I will post here on the blog once I have the forms.

Today has been good but Hannah is still fighting fever of just over 100. She has a sore in her mouth that is causing her pain. Mouth kind of sores are totally normal with Aplastic Anemia ... just no fun. She is getting to know a lot of the pain meds that Kaiser has to offer. :-)

Kim came to hang out with Hannah today while Jim & I got to be with Lily! It was an absolutely beautiful day so it was nice to leave the hospital and just be away for a few hours. Hannah & Kim had a fun time being together!

There was an error in my blog last night -- her white blood cells yesterday were .3 not .5 ! Today her white blood cells are .2 and platelets are 19. She is just about to get a platelet transfusion right now. I am hoping we get a good night of sleep since last night we literally had an all night party and I don't think either of us slept enough today after being up until 6am. Yes, I know .. we are crazy girls!! It is strange though how all the hours just run together in this place. It could be 8am right now for all I know!?!

I am trusting the Lord with my Hannah & I know that He has her (and our) absolute best interests at heart!!! In the meantime, please keep praying for her bone marrow to begin waking up.

We get many comments on the blog but one yesterday in particular really made Hannah's heart especially happy: Brooke said, "You have a very special little girl. When I read about Hannah's quote I wanted to cry. I haven't been loving the life that Jesus gave me but I am going to start right now. Please let Hannah know that she has changed a life." Wow. Brooke, thanks for sharing your heart -- your kind words truly gave an extra boost to Hannah's heart.

I am so tired right now & I know I haven't responded to so many people so instead of doing emails, here goes:

1) Melisa S. --- I got your message & I am sorry for not being able to call you back. Hannah was hoping Jacob would have been here on the unit for his Friday appointment ... maybe they can go to the Kaiser Prom together this summer?! :-) I saw that he is coming back for chemo sooner rather than later. I am praying for your precious boy ... and for your strength!!! (a note to others -- pray for sweet Jacob -- he & Hannah rang in the New Year, so to speak, this year. He is receiving treatment for Lukemia....such a sweet 6 year old boy!!!)

2) Brenda S. -- My parents are renting a car but thanks for your offer!! And dinner at the house would be great even though they don't get in until late at night ... we will all enjoy it!

3) Kathleen G. - I got your voicemail .. thanks, friend!!! I love you!!

4) Lynne R. -- Love you, love you, love you ... and muchas gracias!!!

I can't remember anything else right now .. it is sooo past time for me to go to bed!

All God's best from Kaiser Camp Hannah --

$100 Bill

Hannah's blood count numbers are about the same still super low. Her white blood cells are at .5; platelets are 34; hemoglobin is 9.1.

Hannah can have blood donated specifically donated for her! If any of you are an "A+" blood type and live here in the local area, please let me know via email: eriksenvp at gmail dot com We can get special forms from Kaiser to have you come to Fontana to donate and then have it prepared & stored specifically for Hannah's transfusions. How cool is that?

Hannah might look just like her daddy but she's got my entrepreneurial gene. She is on the brink of starting a mini-business from her hospital room ... not kidding! Someone gave her a craft kit for making pot holders ( I can't remember who gave it to her but thank you!!). She started making her first one & decided she wanted to auction it off on my blog. Great idea, right? A Pediatric Cardiologist came into the room yesterday while Hannah was finishing up. I held it up & told him we were going to auction it off & start the bidding at $1. I asked him how much he'd pay for a pot holder like the one Hannah was working on. He immediately said "$100". Hannah & I agreed not to auction it off but to just sell it to him!! :-) He came back today to complete the transaction with a fresh $100 bill in his hands!!!! Hannah was over the moon -- she even took a nap with the $100 bill tucked in her little hand :-)! The doctor told me later that he went 1/2 & 1/2 with Hannah's favorite nurse, Nurse Jacque. Can you imagine the generosity of these wonderful people here at the hospital?! I mean, really!!

I think I have mentioned that the food here is H-O-R-R-I-B-L-E! Well, today I took Hannah's "lunch", if you want to call it that, down to the head guy here at the hospital. He wasn't in today so I met with the Assistant Hospital Administrator. I was so glad to get to see someone because obviously the people in that office are NOT eating the food that is being served to the patients. Truly, I think prison food is better ... well, I don't really know that but I can't imagine it is worse! Everything else with Kaiser is wonderful so seriously something needs to change with the food. Anyway, the administrator actually did a real taste test of Hannah's "roasted turkey & vegetables". She definitely agreed that it wasn't the kind of food her 8 year old granddaughter would like so she took action & brought the person who runs the food service to visit with Hannah and find out what kind of things she wants to eat. Plus, I heard back from someone else in food service that a Mrs. Field's cookie will be on Hannah's tray for lunch & dinner every day .. how funny! There is a long way to go but hopefully today was a first step for the food to be seriously improved for the kids here!

Hannah is learning so much in the medical field. Tonight she did 3 sets of vital signs on herself for the nurse -- you should see her working the blood pressure machine & then sitting back in the bed to "relax" so the blood pressure reading will be accurate . Tonight she got to give herself Morphine. I think we might have a nurse in the making :-)

She had a great visit today with Pastor Lois -- thank you, Lois, for coming & for bringing treats galore for my little one ... and for me :-)! We are so blessed to be a part of the PFB community. Truly, we won the lottery with churches!!!

Thank you, Lord, for the great day with Hannah & for time tonight at home with Lily. She was as sweet as pie!!!! It is such a joy to see her, rock her & just be together. Never did I imagine life would be like this right now but You give good gifts each day. Thank you, Lord, for the wonderful ladies that cleaned my house today ... even changed the sheets in the guest room for when my parents arrive on Sunday! I am just amazed at the kindness of others.

"I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord." - Psalm 27:13 & 14

To the Anonymous Donor: THANK YOU!!!

Thank you, Lord, for the anonymous donor that took time out of their busy day to sit in a chair to get poked in the arm to donate their precious blood that is right now at this moment literally helping to save the life of my treasured Hannah~!

Donate Blood. Save Lives.

THANK YOU to all of you that donate blood, donate platelets and register as a bone marrow donor!!!!!!!!!!!!!!!!!!!!

Hannah & I had a great day today despite the fact that her blood levels are critically low.... I am telling you, this girl is a trooper!!! Jim was in LA today for work so he wasn't able to get to the hospital but he did get to see the Lily after he got back from LA! I saw Lily for the first time yesterday since she got strep throat & it was just amazing to see how much she was walking all over the place!! That girl is m-o-v-i-n-g everywhere!!!! To my delight, Lily she still loves me!!!!!! When I came in, she wanted me & even rested her head on me for a bit when I hugged her.... thank you, Lily .. you made my heart sooo happy!!!!

Personally, I was feeling much better today and on 3 hours sleep, it is totally the Lord!! I can truly say it was so fun to just hang with Hannah today. I had a 1 hour break when Claudia came into the room to do crafts with Hannah. I went to my 2 favorite local places: Del Taco (for my Diet Coke with a squirt of Cherry Coke) and to Kmart to buy more pj's!!! We go through pj's like crazy around here~~!!! :-)

As for Hannah, she is just enjoying life here at the hospital ...going from one thing to the next: coloring, to crafts, to singing, to watching movies, talking to the nurses, learning about all things medical / hospital-related. It is just the Lord that is sustaining her happy heart in the midst of hours, days & weeks of being in a hospital room!!

In regards to "the plan for Hannah's recovery" basically at this point we just have to wait, wait, wait, wait, wait. There is nothing to do right now except wait & pray for her bone marrow to respond to the treatment she got at NIH. It usually takes months to see if the treatment worked. I am preparing my mind for a very long journey -- I'd love to be wrong but for my own mental preservation, I have to prepare for a long road ahead. Kim reminded me last night that each day is one day closer to Hannah being well again. The journey could be months...it could be years. If the treatment doesn't work the next option is a bone marrow transplant.

For now we are in this very-limbo-lifestyle of living between the hospital & home. When Hannah has a fever (even just 100.4!?!?) we have to be at the hospital for her to get IV antibiotics. It is not possible to do her IV antibiotics at home. There are just too many things that have to be done (labs, blood transfusions, pain meds, etc) not to mention that there are so many things that could go wrong with all the IV antibiotics.

So in the meantime, we are just kicking it in this hospital room. We had visits tonight from Aunt Kim, Cousin Katie, Wendy & Kristi -- great to see you all & it was a BIG HUGE treat for Hannah!

Thank you, Lord, for my little Hannah ... sleeping peacefully here in the room. Thank you for her happy heart & her cheerful attitude with the nurses. Thank you for Claudia & for the incredible blessing she is to Hannah each day she walks through these doors!!!! There is sooo much to be thankful for in the midst of this trial. Kind nurses & secretaries. Doctors that care. A shower that works great. So many signs of Your Mercy & Your Kindness every day. I just have to keep my eyes open to see the gifts You give!!

Psalm 23

The above scrapbook page is a picture of my mom & Hannah walking down the hall in the hospital at NIH. The verses from Psalm 23 are what the Lord brought to my mind as I was making my tea on the morning of December 1st. That was about 2 hours before we went to the doctor's office to have Hannah checked to figure out why she had bruises all over her body. I just had a pit in my stomach that morning that something was terribly wrong with Hannah & truly the Lord brought these verses to my mind & I just sensed His Peace overcome my fear.

Yesterday I was so weepy. I guess after a 6 week game of "hospital hokie-pokie" it is normal. I also think it was just a combination of so many emotions: being discharged from the hospital .... Lily being sick while we were home and she couldn't be home with us.....being re-admitted so soon to the hospital .... seeing Hannah endure so much on Tuesday night (that was just horrific!!). Plus, I think I am just realizing that the road to recovery for Aplastic Anemia is a very, very, very, very L--O--N--G and very, very, very, very S--L--O--W process.

I know I can trust the Lord with ALL of my breaking heart. None of this is a surprise to God. He isn't scrambling around in panic trying to figure out why Hannah has Aplastic Anemia. HE knows it all! He has EACH of my days, Hannah's days and ALL of our days specifically numbered. I can fully, totally trust Him. He hasn't abandoned me. He is my Comfort ... He is my Strength ... and praise God, through this trial, He has been my moment to moment EVERYTHING!!!

Yesterday when I went home I saw that a friend had sent her husband's landscape crew over to our place to plant flowers in the front planter...WOW?! Then, when I went to the backyard I thought I was in the wrong place -- our entire backyard was cleaned up -- palm trees cut, bushes trimmed, leaves raked & even some flowers planted!!! I just couldn't believe it!!!!! I called my friend & could barely say thank you because I was crying so much. Poor thing, I made her cry & she was in the middle of the grocery store ... sorry, Wendy!!!! :-) I know flowers & cut palm trees are not going to make Hannah better but it really did so much to lift my spirits on what was one of the hardest days for me! Wendy, I hope when you hand out paychecks to "the guys" you tell them that their work this week literally made a difference in some one's life -- please, please thank them from me!!!

As of today, sweet Lily is officially 16 months old!!!!!! Happy 16 month birthday, sweet Lily!!!! I love you so, so, so, so much & my heart just is breaking to be away from you! I know you will never have memories of this time ....all you will know is that you were loved ... thank you, Lord, for the amazing gift of love that Lily is getting each day!!!

All God's best from Kaiser Fontana with my sleeping Hannah .....



P.S. I can't keep track of everything that people have sent, have done, have said or have been for me .... but it is just amazing!!! Please know if I don't thank you on this blog it is not because I don't appreciate every ounce of effort you have made to send me a text, email, voicemail, bring a meal, mail a package, send a card, etc., etc. .... I am soooo thankful & I apologize for not responding to all emails ,text messages, voice mails -- I just can't ... but please keep them coming, they mean so much to me!!!!













I ha

Hannah's Quote of the Day

Tonight was very rough for my sweet Hannah but she continues to amaze me even through the roughest of times! She is trying hard to understand what is happening & coping with all that is being expected of her during this illness (i.e., taking lots & lots of pills every day, getting poked through her skin with a 1" needle, getting poked again, getting poked again, the list goes on & on) .

Hannah's blood counts are down again (well, they were already down, now they are just more critically low than when we were at home). Her white blood cell count is at .3 (normal starts at 4.5), platelets at 20 (normal starts at 140) and her hemoglobin at 6.6. And for all the other medical persons out there (or myself in 10 years when I re-read this blog), Hannah's ANC is 46.5!!?!

Fagel, your comment from my last post encouraged me so much when you wrote: "Scripture is so full of exhortations to persevere during trials. . . the longer they last, the weaker we feel. Thank goodness our High Priest is interceding for us when we can't even pray for ourselves. Remember what He is praying? That our faith will not fail." So true!!!

Tonight I "had" to bring Hannah something new when I came back from being at home where I had been RE-RE-RE-RE-packing. (And, Wendy, I know you are laughing at me for bringing Hannah something new but she has n-o-t-h-i-n-g !!!)

I bought Hannah a new shirt that says "Love the Life You Live". When I held it up for Hannah to read she said, "how about if it said 'Love the life Jesus gave you'"

Every day, every single minute of this journey ... in the midst of all the tears, giggles & trials she just keeps amazing me.

Take a Guess Where We Are ...

10 points for you if you guessed: the hospital in Fontana.

Hannah was admitted just after we got to the clinic this morning because her temp was in the 100 range. Now it is 101 so something is certainly going on. Her blood tests haven't come back yet so we don't know what her counts are today.

I have to say that Hannah's happy heart & good attitude are giving me extra strength today. Most kids would be crying saying 'I don't want to go back to the hospital' -- not Hannah. She was cheerful & pleasant as she got wheeled from the clinic to her new hospital room.

There is someone in the room we stayed in for so many weeks so we are in a different room this visit. It was strange to walk by our old room & see someone else in there ..it felt a bit like an intruder was sitting on the couch in my living room. I am sure they are very nice and certainly other children deserve a turn in the Hannah's old Suite!!! :-) ha.ha.

Thank you to all who have encouraged me (and all of us!) on this journey. As I was walking under the clinic sign, "Pediatric Hematology / Oncology", it hit me again that I am living every mother's worst nightmare. By God's amazing grace He is sustaining me each moment. I had a good cry (not in front of Hannah) after we were told she was being admitted. The whole thing is just still so completely unreal to me.

100.4 ..?!!

Well, Hannah's temperature hit 100.4 this afternoon & my heart just sank. We gave her Tylenol & now her temp is in the normal range. I talked to Dr. Horvath at Kaiser & she said if it goes back up to 100.4 we have marching orders to come check in at the hospital tonight. Otherwise, we will see her tomorrow morning in the clinic. I am just praying that her temp stays low enough for us to be home a little bit longer ... is that too much for this crazy mom to to ask?!?!!

Hannah's cousin, Jane, came over today for a brief visit. I didn't think about taking a picture of them together & now I totally regret it!! It has been such a long time since they've had a play date and I know they just loved, loved being together again!! It made my heart so happy to see that little girl today!! My nickname for Jane is "R.J" "Relentless Jane". She is totally relentless when she wants something - seriously if she doesn't go into sales that girl is missing her calling in life :-) Hannah & Jane look like twins in a lot of ways ..too cute these girls with the Eriksen genes :-)

Lily is doing great at Aunt Kim's --I am still waiting to hear back from NIH on when she can come home. Of course, I am sure by the time she is well enough to come home, we will be back at Kaiser with Hannah ..... the fun just continues :-)!!

Still at Home!

Hannah's temperature has been hanging around 99 / 100 all weekend. Until it hits 100.4, we are fine to be at home. Today was another movie madness day & I have to say it is nice to see that Hannah is sooo happy to be home! She told me tonight that this is the best place on earth. I guess that's the way it is when the mom let's the 7 year old stay up til all hours scrapbooking until after 1am!! Should I wonder why we don't wake up until around 11am!?!

Lily is being loved on 24/7 & cared for like no other!!!!! She is camped out over at the Slazas' & seems to be feeling much better from what Kim has told me :-). Tonight her temp was in the 99's again but it was normal all day. I am waiting to hear back from the doctor at NIH in regards to how long Lily needs to be without any fever before she can come home. Hopefully by Tuesday, after Hannah has been to the clinic!!!

I never thought I'd love my house so much. For about 2 years I have been so sick of the tile floors in most of the downstairs part of our home. I've just been in the mood for a change & have been thinking about putting in hardwood floors. Can I just tell you that after 5 weeks in & out of hospitals, I could care less about the tile floors in my house! I'd sleep on them if I had to ... it is just so nice to be out of the hospital ... to not have nurses walking in & out at all hours ... cleaning people coming in ... trash collectors coming in at midnight...you name it, at the hospital your room is pretty much open to all hospital employees 24/7!

I am a little behind this year on Christmas gifts ... but with very good reason :-) I just completed my Christmas project that I do each year for my family...so get ready, girls, for your 2009 calendar!

Please keep praying that Hannah's bone marrow will come back online. We will see on Tuesday at the clinic what her WBC counts are. Lord willing, her WBC will be up a bit or at least still holding at .5!!

Sleep & Temperatures Rising

I slept for almost 24 hours straight - literally. I got up twice to eat & give Hannah her medicine. Jim did her medicine last night while I was sound asleep. They spent all day today hanging out --watching movies, having popcorn & drinking hot chocolate. All while I was snoring away! I think my exhaustion was as much mental as it was physical. All these weeks of going, going, going with Hannah finally caught up to me.

Lily's fever was back a bit today & now she is coughing with a runny nose ... poor little thing! Kim says she perks back up when she has Tylenol. I feel so bad that she is sick!!! 5 weeks of her being totally healthy & now she gets sick. At this point, it is so crazy that I just have to laugh or I might not be able to stop crying once I start.

Hannah's temperature has been anywhere from 99 - 100 this evening .. which puts us at the brink of going back to the hospital. "Oy veh" is all I have to say if we are headed back to Kaiser anytime soon!! :-)

It is so great to be here at home - sleep in our own beds & be able to get ice from our own freezer (at the hospital the nurses have to bring ice from the staff kitchen).

We received a lot of mail today -- thank you to everyone that sent Hannah cards, pictures & well wishes!!! She loves it!!! She asked tonight if Lily is going to start getting lots of mail because she has strep throat. I just had to laugh ... I guess she is a little worried she might have to share the "sick spotlight" with her new little sister! A normal reaction for a girl that was an only child for almost 7 years, right? :-)

1st Day at Clinic

I am so tired right now after waking up every hour last night to make sure Hannah did not have a fever ... which she didn't (and still doesn't)! I was so concerned she was going to get what Lily came down with!!

Hannah & I spent all day at the clinic. I put numbing cream on her port area before we left home so that when we got to the clinic they could access her port right away. She was SO brave for her first visit to the clinic!! It was a bit unnerving for her to go into a totally new place, meet new nurses & have new things done to care for her aplastic anemia. Her platelet count was low enough (23,000) that they did a transfusion --that took over 2 hours. Thankfully, her white blood cell count is holding at .5!!!!!! I am thrilled that her WBC did not go down .. and praying it will start going up more.

Per Hannah's request, we stopped at Cold Stone for ice cream on our way home. It was her first outing anywhere since all of this started on December 1st! We bumped into Mia & Christy from www.tomiawithlove.blogspot.com near the Cold Stone. :-)

Lily was without a fever this afternoon over at Aunt Kim's. I am so bummed she is sick and not home but so incredibly thankful that she is with her "Momma #2", as Hannah calls Kim :-)

Please keep praying for Hannah's bone marrow to start working again and for Lily to get better and for the Slazas family to be protected from the strep throat germs!!!

Thank you so much ... we are so blessed by so many that continue to encourage us & support us in many, many ways. Thanks, Jenny, for the yummy casserole ... it is still being enjoyed!! And, thank you to the Svalstads for the homemade dinner delivery. We are so thankful!!

All God's best --

I Wish I Was Kidding ...

We were all enjoying a nice day at home when Hannah, Lily & I took a nap together from noon - 2pm. Lily woke up crying, which is very unusual for her, especially since we were right there sleeping in the bed next to her. I picked her up & she was burning up!!! Her temperature was above 103!!! Can you imagine?

After sitting in denial for about 30 seconds, I called my friend Joyce, who is a dr at Kaiser, and she said Lily needed to go back to Aunt Kim's right away. Kim took Lily to our doctor at 3:30 and our little princess girl has strep throat!?!?!?!!?!! Lily is highly contagious so she is going to be camped out with the Slazas' until she is beyond her fever and the doctor clears her as being safe to be around Hannah.

If you are reading this & you can't believe it, you are not alone ... this is happening to my life and even I can't believe what is going on!

Hannah & I go to the outpatient clinic at 9am tomorrow for her to start her follow up treatment. Her blood levels will get checked - I am very curious to know how her white blood cells are holding.

Pray that Lily gets better and for the Slazas' -- that they don't catch what she's got. Also, please pray for God's hand of protection on Hannah and that she does not get this!! I am taking Hannah's temperature like crazy to make sure she isn't coming down with anything.

And to top things off, we just had an earthquake here as I was typing!?!?!?!

We are Home!!!!

I will keep this very short b/c we are just about to snuggle up in bed together & watch Elf!! Hannah is one very happy camper to be back at home. Lily got home just after we arrived & it is so great to have both girls here at HOME!! Thank you, Lord!!!

We go back to the hospital (out patient) on Friday for Hannah to receive a transfusion of platelets. Her white blood cell count is holding at .05!! We will find out on Friday if that numbers changes at all in the next day or so.

Hannah continues to receive mail ... and she loves it!! Yesterday she got a picture in the mail of the Hannah Montana cast that was signed "Get well, Hannah! xoxo Miley Cyrus" (thank you, Bridgette Ridenour!!).

There will never be enough words to express my gratitude to the entire Slazas family for all of their help, encouragement, prayers, "medical googling" & of course, all the love they poured into our sweet Lily (not to mention the diaper changes, feedings, etc!!)!!! I had total peace of mind about Lily while we were in the hospital & for that I am soooo grateful!!!

Lily is asleep in her crib right now. Hannah is playing with the medical items that nurse Jacque sent "Dr. Hannah" home with :-) Time to get into bed & watch Elf!

We all enjoyed an AWESOME dinner --- thank you, Wendy! You are one awesome cook ..we loved every bite!!!

Numbers are Holding ...

Hannah's WBC (white blood cell) count is holding at .5 -- such great news!!!!! Her platelet count is not dropping as quickly as it had been a few weeks back-- yesterday her platelet count was 65, today it was in the 50's.

Dr. Horvath looked at Hannah's blood under the microscope & there were some cells. When we came back from NIH, there were almost NO cells so something is starting to happen in the bone marrow!! What an answer to prayer!!! Keep praying for Hannah's bone marrow to come back to it's normal-happy-working-self :-)!!!!

At home this morning we had all of the carpets steam cleaned. Jim is coming to the hospital this afternoon so I can go home to grocery shop & get the house ready FOR HANNAH TO COME HOME TOMORROW!!!!!!!!! Dr. Horvath says that it looks really good for us to bust out of this hospital on Wednesday!!

YEAH ... I am so happy at the thought of all four of us being home!!

"Teach us to number our days, that we may apply our hearts unto wisdom ... Satisfy us early with Thy mercy; that we may rejoice and be glad all our days ..." - Psalm 90:12,14

More Movement Upward

Hannah's WBC (white blood cell) count was UP TO .5 today!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! .5 is still a dangerously low WBC number but it is a major miracle for her numbers to be going in an upward direction!!!!!! We are all (doctors included) encouraged to see some movement with her numbers.

She is not running a fever & is off of all antibiotics. The doctor talked to us at length today & if Hannah remains without a fever we will be going home at some point this week. Once we are home, Hannah will be able to live life as normally as possible while camping out at home & keeping away from people who are sick-have been sick-have been near someone who is sick or people who are thinking about getting sick !!! :-)

I got home for a few hours today with Lily. She is so easy & sweet. This afternoon I was rocking her in her room & she was just about to fall asleep when she looked up at me -- when I looked at her she smiled her big full face toothy grin. I started laughing so hard & it was all over for an afternoon nap at that point. She completely perked up & off we went for some more time playing.

I am so encouraged that, Lord willing, Hannah's bone marrow is leaving "the vacation cruise" & making its way back to working properly in Hannah!!!!

No matter what & no matter how long the road to recovery is -- God is the same He has always been: today, yesterday & for all eternity.

All the best from Hannah Fontana's Kaiser Suite --

Sunday: Spainsh Rice & Mail Therapy

Thank you to Dawn & Michael Abasta for more "SRT", otherwise known as "Spanish Rice Therapy" and the papusas for all of us!!!

This morning was stressful as the needle in Hannah's port got dislodged probably while Hannah was sleeping. The only fix was to take the needle out & quickly re-insert a new one without taking time to allow Hannah's skin to become numb from numbing cream that usually sits on her skin for about 1/2 hour before the new needle gets put in. As you can imagine, Hannah was very upset at the thought of the needle being changed without numbing cream!?!?! It was the only way to get her port re-accessed without having to go back into the OR. Thank you, Lord, that Jacque was Hannah's nurse today -- she saved the day with her calm & caring way of explaining what needed to happen. Jim also came through with reminding Hannah of other things and how well she's done -- next thing you know, the needle was in & Hannah didn't even feel it!!! What a relief!!! Hannah is not running a fever, her blood cultures all came back negative (so she has no blood infection). Her WBC count went back to .3 ... so we don't really know why it was up to .4 for two days. She is looking so much better & not having nearly as much discomfort as she was having last week. The doctor took her off all of her IV anti-biotics today to see how she does ... and even mentioned maybe sending Hannah home this week!!?!?!!!!!!! I HOPE SO!!!!!!!!!!!!!!!!

A huge thank you to our new friends in blog-land & friends in the real-world that have sent Hannah mail. Thank you for the pictures, the drawings, the wind-up toys(!) & all the well wishes!! Hannah enjoyed the "Mail Therapy" that Jim picked up at the PO Box today. One of the funniest things she received was a letter from a cat named Sophie -- sent all the way from Sophie's home town of Oswaldtwistle, Lancashire, UK. Sophie, you made Hannah's day with the following part of your letter: "My human mum said you have an illness called 'a plastic something', I have 'a plastic' bowl for my food so I think it must be something much the same. Its funny because I don't have to go to the hospital for my plastic bowl" Hannah was laughing so hard!!

Hannah's attitude is amazing & actually when we talked about going home she said she didn't want to ... not sure what that says about home life (ha, ha!!) or more about how adapted she has become to her new life at the hospital.

I am hoping we can get some sleep tonight -- maybe this is a good sign that I am posting to the blog before 1AM!

Thank you for all the prayers & love! Pray that Hannah's bone marrow will come back from the therapy she received at the NIH!

All God's best,

What day is it?

Hannah & I have been keeping some pretty crazy hours & truly it is hard to remember what day it is. Basically when the night nurse shows up we are welcoming her to our "day hours". Today we slept until noon after going to bed sometime around 5AM!?!?!

Hannah's white blood cell count (WBC) did not drop but it also did not increase. It is still at .4 (it should be a minimum of 4.5!!). I was hoping the WBC would have increased but at least it did not drop ... for that I am thankful! She received platelets today. On a positive note, she did not have a fever today -- thank you, Lord!!!

I left the hospital today around 1pm to be home with Lily. She enjoyed bath time, playing, eating & taking a nap in bed with Momma!! She is so so so so so sweet & I just had to not think about all I am missing with her right now or she'd be wondering why mommy was banging her head on the floor screaming "WHY!?!?!". Thank you, God, that she isn't missing an ounce of love while she is camping out the Slazas family -- that girl is L-O-V-E-D!!!

Hannah had a fun day at the hospital with Jim -- they colored, played Wii & even had a "surprise" visit from Hannah's 1st grade teacher (it was a surprise to Hannah but not to us :-)! I know seeing her teacher a real treat for Hannah, as her visitors are VERY few & far between. Her teacher is W-O-N-D-E-F-U-L and full of kindness, love & care for Hannah.

Realizing how critically ill Hannah is has hit me at the strangest times. One day while we were at NIH, the girl in the room next to Hannah was being wheeled to the Operating Room. I happened to be in the hall at the time & I looked at her on the gurney thinking, 'oh my goodness, that little girl is SOOOO sick. Wow - she is SO sick." Then it really hit me, "OH MY LORD! We are here at the NIH with OUR little girl -- SHE is SOOO sick." I don't know why the severity of Hannah's illness hit me hard at that moment but I will never forget the impact of that as long as I live.

Today I asked one of the nurses about a 10 year old boy we met on the ward that was just diagnosed 2 weeks ago with metastasized cancer. She told me that he went home. I thought, 'HE went home!?!...if he went home, what are WE STILL doing here??!!!?!?!' Oh my.

Constantly I have to redirect the focus of my heart to simply "Trust in the Lord with ALL my heart and not lean on my own understanding". I can't dwell on what kind of medical catastrophe this is for my sweet Hannah. Above all things, I know that God has not forgotten Hannah (or any of us) for even one millisecond. Hannah (and all of us) are in His thoughts 24/7/365. He will not slumber, He will not sleep. Thank you, Jesus!!

New Year's Day Pictures of Lily

Here are some of the pictures from the time Jim & I got to spend together with Lily on New Year's Day. She is just such a sweetie pie!! I had fun making these scrapbook pages while Hannah has been sleeping here at the hospital.

Enjoy ... not only is Lily a true beauty, she is the world's easiest baby!!

Needle Change Day

Today's post is a true thank you to two special women that worked some magic today to make my Hannah feel so special, loved & cared for --Jacque & Jackie!!

Hannah's nurse today was Jacque -- a true angel!!! She reassured Hannah all day that the needle change would go off without a hitch because she (Jacque) has done this many times. Needle change time came around 7pm b/c we had to schedule the change around all the medications Hannah gets. As Jacque was sitting on the bed next to Hannah & getting the 1" needle ready, Hannah started to get upset so Jacque just put down the needle stuff & very nicely said "I'll stop. You tell me to go when you are ready." Jacque was so patient with Hannah and it really made Hannah feel like she had some control over the situation. After about 20 seconds of waiting, Hannah said, "ok, you can go now - I am ready." About 5 seconds later the needle was in without any tears or complications!!!! What an answer to today's prayer -- thank you, Lord!! Afterwards, I went out in the hall to thank Jacque & I knew I was going to lose it ... so it was a very short thank you. :-)

Hannah requested a special visit tonight from her friend's mom, Jackie Jacobs. Jackie is a former teacher & truly has a special way with kids. She came in & did crafts with Hannah for over an hour. Jim & I left the room to give them privacy and to run to K-mart (across the street). Hannah's heart seemed a million times lighter when we got back (craft time was super fun & the needle was IN for another week without a hitch!!). I know it was the highlight of Hannah's day to have Jackie spend one-on-one time doing crafts with Hannah. Thank you!!

On a medical note, Hannah has not been running a fever & today's white blood cells were "up" a tiny, tiny bit (from .2 / .3 range up to .4). The dr. didn't know if the count rose because of the Nupegin they had been giving her (but she didn't get Nupegin yesterday or today). We will see how her WBC count does the next few days. I am praying & hoping this is a small sign of her bone marrow beginning to wake up a bit from the slumber. For my own sanity, I can't get my hopes up too much because I know the recovery from Aplastic Anemia can be a very long road.

Maybe because Hannah isn't running a fever & her blood cultures came back negative the doc will let her go home sooner rather than later. I am hoping for that ... I am really, really ready to be home with the whole famkly. But we will see. For right now, the sign is still on the top of the door before you walk into the room: "CAMP HANNAH". We will continue to have fun & keep things on the up & up for Hannah Fontana.

All God's best from Kaiser Hospital --

First Post of 2009

Today marks one month since Hannah came to the hospital with symptoms of Aplastic Amemia and today also marks three months since we came home from China with Lily!!! Unbelievable.

Last night Lily came for a visit but she did not make it until midnight. Instead she went home with daddy & slept it up in her crib. Hannah & I stayed up until 4am -- we are true hospital party animals!! Hannah & a sweet little 6 year old boy, Jacob, across the hall had their room doors open & they blew horns at each other at midnight. It was so cute and a New Year's Eve memory that I will always cherish!!!

Hannah has been having some pain from swelling caused by Prednisone & the fluids she receives through her IV. Her day was filled with lots of "Vitamin B & Vitamin M: ...code for Benadryl & Morphine :-)! Hannah received red blood cells today & tomorrow she will get a transfusion of platelets. The medication they were giving her to try to boost her white blood cells, Nupigen (i think that is the medicine .. something like that?), did not work at all so they have cancelled that. Hannah has not been running a fever today but her blood pressure is a bit high (again, another side effect from her medication!??!). All in all, she is such a trooper & doing well despite many, many bad side effects from medication.

She spent a few hours today with Aunt Kim & Katie while Jim & I got out for a bit to spend time with each other and with Lily. We had a nice dinner at one of my favorite places, King's Fish House. The food was great & it was nice to be together but in every way it didn't feel right to be out to dinner with Lily & not have Hannah with us. Something was very wrong!

I am so thankful for the many, many, many people that keep encouraging us & supporting us during this time. Mostly, I can't wait to be looking back on all of this with 2 healthy girls at home but for now I feel completely sustained by the Lord, an army of prayer warriors, loving friends & caring strangers.

Please pray for Hannah tomorrow (Friday) her port will get de-accessed & re-accessed. That means the nurse will remove a 1 1/2" needle that has been inside her port for a week (taped to her chest) and put in a new 1" needle. These needles have to be changed once a week to prevent infection. Just pray for Hannah. Last week's accessing of the port did not go well. Her nurse tomorrow is Jackie -- she is wonderful & has assured Hannah that tomorrow will be a piece of cake with the port.

Pray also that her bone marrow will start to come back "from it's cruise to the Bahamas". We decided it must be on a nice vacation to have already been gone for this long!! :-)

Hannah & I have been having the most amazing conversations since she got sick (most of them started by her!). I can just see that she is really trusting in the Lord with all her heart through this. Yesterday she drew a picture of a little girl reading a book with a thought bubble above her head "God is with you all the time". On the other side of the paper it looks like a voice is coming from heaven (or a tree, depending on your view) & the voice says "Never be afraid." -- God.

Wow, does she get it: NEVER BE AFRAID.