Hannah Day

Hannah's cousins, from Philadelphia, arrived this evening with Aunt Rachel & my cousin, Blair. Hannah is so happy to just have some fun hanging out with her cousins.

She is off of the oxygen & looking really good!!! She has not had a fever all day ... thank you, Lord!!!!! She is scheduled for an MRI on July 1st to try to figure out why she keeps having so much pain in her legs (and now in her back - yesterday & today).

We'd love to be home, happy & healthy right now but if we are going to be in this situation, there really is no better place to be than at the NIH! I am just so thankful for the incredible care that Hannah is receiving & that she is in a hospital that is super, ultra kid-friendly. We love Kaiser Fontana and we LOVE our nurses & Claudia back in California but having an air hockey machine, playroom and playground is pretty cool!!

Hannah got unhooked from her IV pole this evening & played with her cousins on the playground that is right outside the unit. We even brought pizza for a picnic .. until we started to get eaten by the mosquitoes. It is so much fun to see Hannah be a kid in the midst of all her medical issues ... and even in the midst of recovering from double pneumonia!!

Thank you to everyone that has been busy putting stamps on cards, postcards & sending packages ... the mail is always a bright spot in Hannah's day. Today she was hiding under the covers but jumped out when she heard there was mail to be had! Thank you, thank you!

All God's best --

Kaiser Sunset Room 766

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

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

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

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

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

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

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!!

$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

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!!!!













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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.