I woke up today on the couch in a hospital room with my daughter in the hospital bed attached to an IV pole. I thought I was dreaming. But, no. Can you say? Reality.
Welcome to month number 7 of feeling like my life is tumbling by in a washing machine.
Hannah's fever has been down for a few days. Rash, itching & irritability has been off the charts awful. Itching, especially. Hannah gets about 50mg of Benadryl every 8 hours to help with the itching
The CT Scan showed that her lungs are improved from the pneumonia but not 100% cleared up.
Hannah will probably get discharged from the hospital at the end of this week ... and then the "wait & see" starts all over again with this round of treatment. I think we are giving this about 6 - 12 weeks to kick in before we try anything else ... this treatment just takes TIME to work. It is not the kind of thing that produces results immediately after treatment.
We will most likely stay here for the summer waiting to see if this treatment kicks in. We are able to stay across the street at the Children's Inn (for free) & Lily will be able to be here with us (Jim is going to bring her in about 2 weeks!). As much as I'd love to just go home, I know that if we go home & Hannah has complications, she will end up in the hospital there (like she has for the past 7 months!). If we stay here & have complications she will be hospitalized here but there is just no comparison ... from things like: a window in our room to room service to yummy food to a medical team that deals with hundreds of Aplastic Anemia patients every year. It is just such a better set up ... even though we love Kaiser in Fontana ...and we love our nurses! I feel such peace about staying ... at least until we know for sure if this treatment is working or if we have to do something else.
I'd love to fly back by myself to California & drive back East so we could have my car while we are here. Honestly, I think the long road trip would be therapy for me after all these months - the long, long, long drive with lots of hours alone to think & process is probably way more of what I need right now than really needing my car out here. Just the thought of it ...... aaaah.
All God's best from the NIH!!!
Tuesday, June 30, 2009
Still in the Hospital
Sunday, June 28, 2009
Daniel, We Miss You
What a gem he was!! He said Hannah was like a little sister to him ... and he was so sweet to her! She made drew him pictures, made him crafts & cards. I think she delighted in making things for Daniel because he apprecaited them and he kept them. He still had the Easter craft hanging on his IV pole this month that Hannah had made for him before Easter. She made him paper-mache flowers and he kept them in a vase on his shelf where he could see them.
Just a few weeks ago Hannah had a friend over to our house & I overheard her saying something about "my friend Daniel from the hospital". I thought it was so cute that she was talking about her friend Daniel, even though he is 17. Despite the 10 year age difference they had a special connection. Well, I guess Daniel had a special connection with everyone ... he was just one very special young man.
This past Valentine's Day Daniel wasn't feeling good but he made one Valentine's day card. The card was for Hannah & he walked it across the hall to give it to her himself even though he felt cruddy from the chemo.
He was a gentle giant with a very tender heart. He will always be missed. 
Lily kissing Daniel when she came into the room to visit ... she was therapy for him! He loved her!
Saturday, June 27, 2009
Our Friend, Daniel & Serum Sickness for Hannah
This will be shocking news ... it certainly was to me.
Our dear friend from Kaiser Fontana, Daniel Gonzales, died last night. I hate to even put this on the blog but I know so many of you have sent cards & pictures to Daniel. He was taken to ICU last night with complications & from there I don't know any details.
While we were all living at the hospital together, I had some great talks with Daniel & I know he is now in the arms of Jesus without any pain or discomfort. We called Daniel "the mayor" of the Pediatrics Unit. He knew everyone & everyone knew him .... and everyone loved him. Kaiser Fontana will not be the same without our Daniel. Hannah & Lily both loved him very much ... we all did! Daniel loved to wear funny t-shirts. One said: I AM NOT FAT, I AM FLUFFY. Another t-shirt said: NOT ONLY AM I PERFECT, I AM MEXICAN, TOO. He was a very special young man & he will always have a tender spot in our hearts. Thank you, Daniel, for being such a dear young guy ... we will see you again but it will be NO BEUNO without you!
Hannah is in full blown serum sickness. Fever, rash, achy, itchy, uncomfortable. She has spent the entire day in bed. She has been getting morphine & benadryl round the clock to keep her comfortable from itching & feeling achy. She just amazes me the way she is bearing down & coping with how terrible she feels right now. She knows it will be a few (or several) days of miserable & then we can get back to having some fun.
She handles all of this so much better than most adults would take it.... truly, someone remind me to get her a new trophy once we are through this week. She deserves it! My mom is here & we are camping out with Hannah .. playing a lot of sudoku & just being here for whatever she needs.
My computer blew up last night in the thunder storm (oops!). My mom is going to take my laptop to Philly for a little TLC next week so until then I will have limited internet access. Sorry for not replying to emails, etc.
Thursday, June 25, 2009
The many faces of Lily
Today was a great day! We ate, sang la la, napped, pooped, laughed, ran, walked, wrote "l and i" for Lily, kissed and hugged!!
Thank you, Family!
Hannah woke up with a 103 fever --- went to 104 & then has been down from there all day. She is probably getting serum sickness so we are kind of bracing ourselves for a bit of a rough weekend.
My sister, Rachel & her kids were here with my cousin Blair. They were all so helpful today hanging out with Hannah & making the day really fun for her. Even this morning when Hannah woke up with her fever she wanted her cousins to come over to spend time with her .. so cute! They played, colored, hung out & had fun ... thank you, family!!!!! I took an awesome nap at the Children's Inn this afternoon ... my favorite activity: sleep!! My mom made a wonderful dinner for all of us & Hannah got to come over to the Children's Inn for dinner together. SO NICE to just have some normal time together in the midst of all that she is going through.
Hannah's lungs seem better .. she will have a follow-up CT Scan on Monday to make sure the pneumonia is clearing up. Please just pray this serum sickness is not as bad as in December ... it was horrible~!! Also, pray for Hannah's bone marrow to come home.
COME HOME BONE MARROW .. WE MISS YOU!
All God's best from the NIH in Maryland --
Wednesday, June 24, 2009
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 --
Tuesday, June 23, 2009
Something to Share
I thank You for the bitter things
They've been a friend to grace,
They've driven me from the paths
of ease --
To storm the secret place.
-- Flornece White Willett
Hannah is doing amazingly well considering what her body is fighting against right now. She has come so far in just 24 hours with this pneumonia. Don't get me wrong -- she isn't fine & healthy but she no longer has a monster fever ... thank you, Lord!!! She even went this afternoon to a mini-day-camp (2 hours) at the Children's Inn. It was cake decorating class. You should have seen how proud she was of her rolled out fondant & beautiful cake!! It was a wonderful boost for her emotionally to go do something non-hospital-ish & just be a kid!!!!
At times it REALLY hits me how critically ill Hannah is (like when I count up the days we have been in the hospital or she gets a 106.7 fever!). Other times I am able to just play with Hannah like "isn't this fun?" and "when I follow you to college one day, this is what it will be like when I live in your dorm with you" kind of attitude.
I have truly just tried to make the absolute best of all of this. What else can I do? Really. Having a bad attitude is NOT going to change this situation & it is not going to make Hannah well. Having a bad attitude is not going to make my heart stop breaking over missing Lily. Truly, it has just been God's amazing grace each & every day.
Has this been an easy road? Heck, no!
Has this been the most heart-wrenching, draining, exhausting, unreal & unbelievable time in my life -- absolutely!
But what I wanted to share was what I read the other day from "31 Days of Praise" by Ruth Myers. It encouraged my heart so much because, most days, especially these days of life in the hospital, my desire is for a trouble-free & pain-free life.
I hope the following excerpt also encourages your heart:
"Father, I'm so delighted that You are both loving and sovereign, and that You cause all things to work together for good to those who love You, to those who are called according to Your purpose. So I thank You for each disturbing or humbling situation in my life, for each breaking or cleansing process You are allowing, for each problem or hindrance, for each thing that triggers in me anxiety or anger or pain. And I thank You in advance for each disappointment, each demanding duty, each pressure, each interruption that may arise in the coming hours and days.
Thank You that each difficulty is an opportunity to see You work ... that in Your time You will bring me out to a place of abundance. I rejoice that You plan to enrich and beautify me through each problem, each conflict, each struggle .. that through them You expose my weaknesses and needs, my hidden sins, my self-centeredness (and especially my self-reliance and pride). Thank you that you use trials to humble me and perfect my faith and produce in me the quality of endurance ... that they prepare the soil of my heart for the fresh new growth in godliness that You and I both long to see in me ... and that my momentary troubles are producing for me an eternal glory that far outweighs them all, as I keep my eyes focused on You. I'm grateful that You look beyond my superficial desire for a trouble-free life; instead, You fulfill my deep-down desire to glorify You, enjoy Your warm fellowship, and become more like Your Son. " -- 31 Days of Praise, pg 80 (day 18) by Ruth Myers
God is good. No matter what. No matter how this road turns, no matter how many valleys or how many times I tell Him I don't understand any of this, He is faithful & He is good. Always.
Quick Update
Just a super quick update to say that Hannah is doing SO much better!! Her fever has been 101 or under all day & actually right now it is NORMAL!!!!! Total answer to prayer. I will try to update more later but just wanted to say that Hannah is looking good & headed out to the playground right now for about 30 minutes of fun before bedtime stuff.
Wow -- what a change from the girl that was here yesterday!
THANK YOU, LORD!!!!!
Monday, June 22, 2009
Pneumonia
CT Scan immediately showed bi-lateral pneumonia. The top infectious disease doctors came to our room just after the scan to tell me about the heavy duty antibiotics they are putting Hannah on. They want to see how she responds over the next two days or so & then if things haven't changed they will do some more investigating to see what kind of bacteria is in her lungs. It is a severe pneumonia ... but they emphasized to me that it is treatable!!!!! Thank you, Lord! Hannah is on oxygen & a monitor to keep track of her O2 level & her heart rate.
She has been sleeping almost the entire day. Even when we have left the room for procedures (CT Scan & an IV line getting placed in her arm), she has slept either in the wheelchair or on the stretcher to & from procedures. Poor thing is just absolutely exhausted. I have really never seen her like this before. Right now I am in the bed with her and even though she is asleep, she knows if I get up ... so I don't.
My mom & dad are both here. They are staying at the Children's Inn right across the street -- I am so thankful they are here. My mom was here first thing in the morning when I sent her a message about Hannah's fever. Both of us were just in shock at how sick Hannah was this morning.
Her temp is climbing again ... hopefully not back to the 106's but she has been above 101 almost the entire day.
Her nurse, Amanda, is INCREDIBLE!!!!!!!!!!!!!!!! Today is day #4 with Amanda & Hannah L-O-V-E-S her!! She calls her "Lady" .. it is soooo cute! Even in the shape that Hannah is in, she will listen to Amanda & work with her to take medicine & do what needs to be done. Thank you, Lord!!!!
My cheery little girl sitting on the window sill opening mail the other day is no where to be found today. Please pray all these antibiotics kick in & she will be in better shape soon.
PS -- Lil, WE LOVE YOU & LOVE seeing pictures of you on the blog!!!! Your pictures make our hearts soooo happy!!! If only this room was conducive to fun play for you, we'd have you here in a heartbeat! Keep having so much fun & being the perfect little baby that you are!!!!
Hannah Update
Hannah's temperature is 106.7 ... yes, 106.7!!!! She is going for a CT Scan of her head & chest to see what is going on. Doesn't look like serum sickness at this point. Probably something else is going on ...we will know more later today ... I will try to keep things updated.
Please just pray for my most sweet, precious girl that is laying here in the bed right now not looking so good. My heart has just about dropped out of my body thinking about how this road could turn.
All God's best
Sunday, June 21, 2009
High Fever Tonight
Hannah is about to be hooked up to a PCA (morphine drip) for pain issues. I think she might be getting serum sickness ... it is a common after-effect of the treatment, ATG. Serum sickness is MISERABLE .. think of the worst flu you have ever had & multiply it by about 100. That is serum sickness. She had it in December right after Christmas & was admitted to the hospital for about 12 days because of it.
Right now Hannah's fever is at 104.5 ... no beuno! Ironically, she had a great day even though she woke up with a fever. She spent part of the day playing ball with grandma in the hall, on the playground with Nurse Amanda, hanging out with daddy before he headed back to California and then she took a long nap. The time in the hospital is so strange because literally Hannah can go from seeming great (like in the video with the mail) to being in a massive amout of pain or having a fever -- you just never know from one minute to the next how things are going to be going.
Hope everyone had a nice Father's Day ... another holiday flies by & it still feels like December in my mind.
Last week I bought a magazine while we were in Wash DC ... it was a Jan/Feb 09 issue & I bought it thinking it was a NEW issue!?!?!! Can you imagine? That in itself tells you how messed up my mind is by the time warp we are living in!!! Why the store still had a Jan / Feb issue on the shelf in June, I have no idea.
Have I mentioned recently that her disease, Aplastic Anemia, is C-R-A-Z-Y?~!~?~! It really is.
Sweet Lily
Enjoying some wild rice salad, strawberries and butternut squash soup. Yum!
Lily is so sweet, giving lots of kisses! Saturday, June 20, 2009
"You've Got Mail" & Playground Fun
In case you weren't sure if Hannah likes opening the mail, check this little video out:
Hannah woke up with a fever but it went down after some Tylenol. She is still having pain issues & itching .. not to mention the prednisone. Besides that, when she was feeling good she had an awesome day & was VERY happy to have Amanda as her nurse. Amanda took her to the playground that is right outside the unit on the hospital grounds ... here are some pictures:
Honestly after so much this week, it was so refreshing to hear Hannah laughing & enjoying herself on the playground!!!
ATG is officially over. We are done with this treatment.... no turning back. It is done. Hannah has had two rounds of ATG Treatment & if this doesn't work, well, just put me in a straight jacket & put me in a padded room ... OK, just kidding .... but kind of serious :-) I am just praying this treatment KICKS IN & BRINGS HOME MRS. BONE MARROW!!!!!!!!
As a mini-celebration for treatment being over, we had Hannah's favorite food this afternoon ... Mexican!!! Yummy!!
All God's best from Bethesda, MD @ the NIH ...... "National Institute of Hannah" :-)
Thank you so much to everyone that has sent cards, stickers, posters, pictures, gifts, etc. Truly, getting the mail is a highlight each day & I am so thankful for anything that will make her heart happy through all of this!!
We are still here for at least another week:
Hannah Eriksen
The Children's Inn at NIH
7 West Drive
Bethesda, MD 20814-1509
Friday, June 19, 2009
Last Day of ATG & "Our Friend": PREDNISONE
It is 11:30pm on Friday night & Hannah's last day of ATG is finishing with about 5 more hours to go. Things got started late because she needed red blood cells before things got going. We have been doing a lot of sitting around, hanging out, oh! and we had a "butterfly release" outside the unit today. Hannah had brought caterpillars from California (they came on the plane) & a few days ago she got 4 butterfly's!! I guess that proves that caterpillars do live through X-Ray Security at the airport.
Hannah is on a HEAVY dose of Prednisone. I have been on that drug twice in my life & it is terrible. I felt like a maniac woman when I had to take it -- made me feel upset, irritable, sad, down, hungry, couldn't sleep, etc.
Today I asked Hannah how it made her feel & this is her exact quote:
"You feel hungry all the time & you feel wide awake & you feel nasty & a lot of madness .. if someone asks you a question, you can just get upset in a snap. You wake up in the morning & just feel really angry...angry that you take off all your blankets & throw all your pillows."
Poor thing -- she is just so "not herself".
Tonight she was itchy from the ATG so I was helping to scratch - she'd point to a spot & I'd scratch in that exact spot, she'd point again & I'd scratch in that exact spot, she'd point to somewhere else & I'd scratch in that exact spot. Then she stopped me & said, "You scratch in all the wrong places." I said, "I'm so sorry, Hannah.". Truly, if it wasn't so sad it would be funny because I WAS scratching in all the right places but right now everything is wrong even if it is totally right. Poor Hannah~!
Just pray she will be able to tolerate the Prednisone medication. It lasts for a minimum of 10 days. In December, I think she was on it for about 3 weeks. At that time, I came back to the hospital room one day with a new doll for Hannah (Kim will remember this!!!) ... and Hannah told me it was the ugliest doll in the whole world.
Truly, this medicine makes her so so so not her sweet self. Poor thing!!!!!!
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And last, BUT NOT LEAST .... there are still 2 days to join the National Marrow Donor Program Registry for FREE!!!!! It usually costs $52 to process the paperwork but until 6/22, there is NO CHARGE.
Don't miss this opportunity to get registered. If you are a match for someone all of your costs are covered for your bone marrow to be used.
As I was filling out my application on-line I was just praying .... Please, Lord Jesus, let me be the match to help save some one's life!!!! If needed, please let there be a perfect, perfect match for my Hannah in this bone marrow registry!
Thank you to everyone that has emailed me, texted me or commented that they have already signed up! My heart is so encouraged ... you have registered in honor of Hannah & all she is enduring with her "vacationing bone marrow". God bless you!
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Thursday, June 18, 2009
It's all about BABY
Today was a day full of fun with Baby!! Lily LOVES baby! She hugged her, kissed her, rocked her, played with her, fed her, patted her and put her to sleep on the pillow. She thought it was pretty funny that baby was going to sleep and not her!!
Very Rough Night But A Better Day
After I posted on the blog last night Hannah went into a tailspin of side-effects from her ATG treatment. It came on so fast that it just blew my mind -- literally she went from playing with kids in the playroom to coming back to the room with major pain in her throat & a raging fever. I think by the time her fever broke this morning it was up to 104.5.
Because of the pain in her throat, they took a throat culture & moved us to a private room at 4:30 in the morning so she didn't spread germs to our roommate. Although moving at 4:30am probably isn't the most ideal time, I was very happy because our private room is HUGE, has a tub & a tiny refrigerator. Hannah is now on isolation & has to stay in the room or be out with a mask on so that she doesn't pass a possible infection to the other patients.
Hannah is still getting the ATG from today (day #3). All seems to be going well today ... just issues with itching & pain but thankfully, NO FEVER!!!
Right now a child life specialist, Holly, is in here in the room working with Hannah to deal with issues of anxiety around getting her port accessed. Holly is a-m-a-z-i-n-g & is so helpful in working with Hannah to figure out ways that will make some of her hospital / clinic experiences much more manageable!!! I am so grateful for the time she is spending with Hannah this evening to help her get through things that are not an option with Aplastic Anemia.
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Nurse Hannah playing with Holly in the room
Wednesday, June 17, 2009
Day #2 of ATG is Done!
It is 11:30 pm & I am in the hospital room with adorable Hannah & her cutie-pie roommate, Valerie, while they are coloring together. It is so cute because Valerie's primary language is Spanish but that doesn't stop Hannah from asking her lots of questions in English.
Hannah's first day of ATG actually didn't end until this morning at 9am. It took so long to complete because they had to stop the transfusion many, many, many times for other medications (anti-biotics, prednisone, benadryl, morphine, demerol .. you name it, she got it!). Also, they had to run the transfusion very slowly because of the side effects Hannah was experiencing.
So today was officially "day 2 of ATG" -- it started around 2pm & just finished around 11pm. Hannah did MUCH BETTER today! She is having some side effects but nothing as horrible as yesterday ... thank you, Lord!!!
I woke up with a massive headache so I slept here at the hospital for a lot today while Jim & my mom were here with Hannah. I am so thankful they were here today because I was in no shape to be helping with much of anything.
My sister's former pastor came by (I guess he lives in this area now). What a blessing so many people are to us as we walk this road. We know that God is carrying us through, as truly we have zero energy to be walking this road on our own!!!
Hannah & Daddy in the playroom tonight playing with legos while the ATG was running.
Tuesday, June 16, 2009
Princess Lily
10:30pm & ATG Is Still Going
Hannah had to get red blood cells & platelets today before the ATG got started ... so with that happening over several hours, her ATG ended up starting around 4pm. Hannah had a little bit of a fever but nothing awful.
The first 15 minutes of the ATG transfusion went great .. no reaction. Second 15 minutes went by with just minimal itching reaction .... & then WHAM!!.....Hannah started shaking (think earthquake-like shaking) & feeling H.O.R.R.I.B.L.E.
To say that seeing her like that was hard is such an understatement. She was so brave & truly had on her "endurance" face most of today.
Great job, Hannah!!!!!!!!!!!!!!!!!!! I couldn't be more proud of you & how you handle yourself in such a terrible situations. You even used manners when talking with the nurse while you were shaking ... how sweet are you!?! One day you are going to help so many kids get through a situation like this.... I just know it!
They have reduced the ATG transfusion rate so her ATG probably still has about several hours until it is finished. Wow. What a long day.
We are hoping tomorrow's reaction won't be as bad & that Hannah's body will be able to hold up to what is being put into her system.
I am so thankful my mom & Jim are here. Although we didn't sit & chit-chat the day away while we were camped out in the hospital room, it was just good to have them both here for this very important day: we ate, played Sudoku, read books, magazines, drank Diet Coke & ate some more :-)
Thank you to so many for praying .. thinking of us ... and sending cards. Hannah got 13 pieces of mail today -- Thank you friends & kind strangers!!!!!!!
Lily, we miss you more than words can even possibly say. We loved seeing all the adorable pictures of you on my cell phone today. Just seeing your little smile helped us get through this day!!!!! Give lots of love to our Slazas family!!! We miss you all!!!
Monday, June 15, 2009
Hannah in the News & Day 1 @ the NIH Hospital
Hannah made the front page of our local paper!!!!! The beginning part of the article is here so you can the adorable picture of Hannah with one of the therapy dogs that visits Kaiser Hospital in Fontana. The photo was taken a few hours before we were discharged last Wednesday. It just happened to work out for the therapy dogs to be in the room at the exact time that the newspaper photographer showed up to see Hannah ... we couldn't have even planned it that way but it just worked out great!!!!!
Here is a link to the full article on the website of the Daily Bulletin: http://www.dailybulletin.com/ci_12589030
We are checked in here at the hospital at the National Institutes of Health in Bethesda, MD. Hannah & I are sharing a room for the very first time ever .... we have always had a single room during hospital stays. Instead of feeling upset about it, which was my initial reaction, I decided to look for the good that will come from this "new hospital experience". And sure enough, not long after settling in, we found out that Hannah's roommate (age 3 1/2) also has Aplastic Anemia. That in itself is a huge bonus for Hannah, who has always wanted to meet someone with the same disease!!! So see that ..why do I ever stress?
Hannah's bone marrow biopsy went well ... thank you, Lord!!! She had a significant amount of pain in her back once we got back to the room but after a bit of Morphine she was good as new. This was her 4th bone marrow biopsy & in the past I don't remember her ever having that kind of pain. Long story but I guess the surgeon was not able to inject the site with Lidocaine ... bummer because that would have really helped with the post-procedure pain. Now Hannah is back to dancing, kicking her legs, teasing the nurses & running in the halls .. so I guess the back pain is gone :-)!
Hannah has a chest X-ray at 8am tomorrow (just for protocol before her ATG). Her ATG treatment should start around 10am tomorrow. By far, the first day was the worst when Hannah had ATG in December. Truly, it was a terrible, horrible, no good, very bad day (love that book!). We are going to pre-medicate with Demerol tomorrow & that should help with some of the rough side effects. Basically, we are facing a tough day tomorrow .. just pray Hannah's temperature won't go too high, the shaking won't be so bad, the chills won't be as bad as they were last time & all in all that the ATG would go as good as it could possible go .... and most of all, THAT IT WOULD WORK!!!! We are doing this 2nd round of ATG in the hopes that we can avoid Hannah needing to have a bone marrow transplant or chemotherapy at Johns Hopkins. Neither sound like fun options to me. If this ATG works, she will be in remission & we can "get back to our regularly scheduled program" (Read: life at home as a family of four!).
Hannah is sound asleep right now so I am enjoying some alone time in the "Family Room" here on the unit. My mom & Jim are camped out at The Children's Inn across the street.
Thank you for your prayers & encouragement!!! We truly feel so encouraged & upheld as we are here in Bethesda, so far from home. God is so faithful to give us His peace that surpasses all understanding in the midst of such a storm with Hannah's health.
Oh this is a much better picture, Mom .... just Hannah!!!!
Sunday, June 14, 2009
Baltimore Harbor Day
Grandma Arrives!!!!
Riding the Water Taxi Around the Harbor - Aunt Rachel & her kids!!
We had an awesome time hanging out with Aunt Rachel & cousins Blair, Sarah & David. My mom, Grandma, arrived today & we all spent the day riding the Water Taxi around the Baltimore Harbor (thank you Beth for the suggestion!). It was such a perfect, beautiful day & riding the taxi was so relaxing & we got to take in all the sights. It was so nice & so fun. I just didn't want this day to end ... Hannah laughing with cousins, riding the boat, eating ice-cream, drinking lemonade. ... a perfect summer day of vacation.
Tomorrow she has a bone marrow biopsy. Pray for all to go well & for the ATG to bring her into remission!!!!
Thanks so much & thanks to all of you that are thinking of us, encouraging us & praying for Hannah. Your love does not go unnoticed or unappreciated!!!
PS -- When we got to the Children's Inn there were packages that have been waiting for Hannah since we were here in December. It was like having Christmas in June ... thank you Roose Family, Don & Joanne, Jen & Josh, Susan & Kassy. Also, there were already some cards that had arrived ... thank you!!!!! Mail is our friend :-)
Saturday, June 13, 2009
Weekend Lily
PA!! PAAA!
Lil is such a ham! She does stuff just to get a laugh- like trying to balance the cup on her head. She thought the Mohawk hairdo was pretty special, too.
Day in Washington DC
Jim, Hannah & I had an awesome day on Friday checking out Washington DC. Hannah loved the "Open Top" bus ride all around the city. We are just so happy to be having some time out of a hospital & feeling like we are "on vacation" a bit before we check into NIH on Monday.
We canceled our appointment with Johns Hopkins b/c Kaiser hasn't approved the consultation yet. We are waiting for approval & then we will reschedule (hopefully for while we are still in the area this coming week).
Hannah seems to be feeling good -- she is taking an oral anti biotic plus the another medication to suppress her immune system (so it will stop fighting with her bone marrow), besides that she is just being a normal kid!
Today we have a big treat about to arrive: Aunt Rachel, Cousins Blair, Sarah & David. They are driving down from Philadelphia & checking into a room at the same hotel where we are staying --it is going to be a party tonight!!!!!
PS -- Lily, WE LOVE YOU!!!! The true highlight of our day was seeing YOU on the blog. We have watched your video about a hundred times. You are too cute for words!!!!!!!
Friday, June 12, 2009
A message from Lily
I love you Hannah, Mam and Da!!!
A little something to eat....
working on my marching routine....Thursday, June 11, 2009
@ Hotel in Baltimore
We made it ... and we are sooo happy to see pictures of our sweet Lily here on the blog. Thank you, Aunt Kim .. we L-O-V-E seeing our girl!!!
Hannah didn't sleep at all during the flights even though we were up at 5am to get going. She has had a very happy, happy heart all day. I think she is just very excited for an "adventure" outside of the Kaiser Hospital unit ... without being hooked up to an IV!! :-)
We are moving our appointment with John's Hopkins since we still have not received approval from Kaiser for the consultation ... we will probably meet with them later next week since we will be in the Baltimore area for at least the next 10+ days & Dr. Horvath is trying to get us approval for the consultation.
On one of the flights I met a very nice soldier that was coming home from serving 2 years in Iraq. (I thought 6 months in & out of the hospital was rough .. I can't begin to imagine what he has been through!) I was thanking him for his service & all he has done for our country & I was trying to think what I had in my purse to give to him (didn't think he'd like my Arbonne lip gloss)... I asked him if he liked coffee so I pulled out a Starbucks gift card & gave it to him (just wanted to do something for this nice young soldier!). As we were getting off the plane, he stopped & gave me a patch that the soldiers get when they go into combat. He said he wanted to give it to Hannah since she is going into combat for the bone marrow to come back. I was so touched & really all the emotions of this past hospital visit just about came pouring out all over this soldier named Kevin.
Hannah was very excited to get the patch & said is will go perfect on her Brownie uniform next year in Girl Scouts. Isn't that sweet? :-)
We are planning to do some sightseeing tomorrow & enjoy just being away from all things hospital, at least for this weekend!!! Thank you, Lord!!
I only wish that Lily was here with us for this "mini-bit-of-what-I-am-imagining-to-be-a-vacation".
All God's best from Homewood Suites --
Lily loves Mam, Da, and Haa-nah!!!
Here we see Lily doing one of her favorite things- eating! And, of course, laughing the entire time.
Tonight we had fun playing Peekaboo with her bib. What you can't see here are the carrots mashed into her hair. Nothing that a little BATH won't take of, though.
Doing a little counting review here...... Wuuuuuuuunnnn.....
Wednesday, June 10, 2009
Discharged & Going to Bed!
Officially, Hannah is out of the hospital!!!!!!!!!!!!!! We are home for 15 hours before we leave for the airport to go to the East Coast. We got to spend a wee-bit of time with the wee-little miss Lil ... what a treat she is!!! Oh my goodness!
If I could bring Lily on this trip, I would. My heart is just breaking to leave her here - not because I don't think that she is in the absolute best case scenario for our worst case scenario but because I just want to be with her. Want to rock her. Walk with her. Play with her. Teach her new words. Listen to her laugh. Have her come & hug my leg so that I will pick her up. Do all the things that I thought I'd be doing right now on this first day of summer vacation ...
Hannah, Jim & Lily went over to Kim's to make brownies (I just didn't have the energy in me!) and then Jim & Hannah will be home to sleep so we can all get to the airport early, early (thank you, Kevin .. see you at 5am!!).
Thank you to everyone that is praying & encouraging us along the way!
I ask that all of you with pen, paper & stamps put a card in the mail to Hannah. Please!!!! It would make her day(s) to get overwhelmed with mail while we are at the NIH for her treatment. Make sure to write her arriving date on the address so they don't mail it back to you if your card gets there before we do --
Hannah Eriksen
The Children's Inn at NIH (arriving 6/14)
7 West Drive
Bethesda, MD 20814-1509
We are hopeful that this treatment will work but just trusting the Lord with each new day! Just really laying our lives down with each new moment as we go ...
All God's best from California @ H-O-M-E,
Tuesday, June 9, 2009
It's A Marrowthon!!
I am truly so ashamed to say it but I had the chance to register a few years ago for the Bone Marrow Registry & I didn't.
Too busy.
Too ignorant.
Too something.
I don't know ....
Now here I am in the process of looking for a bone marrow donor for my Hannah. Do you think I had any clue a few years back that by simply registering with bethematch.org potentially the cells in my body could literally be the ones to SAVE SOMEONE ELSE'S LIFE!?
I had no idea.
I heard it but I didn't get it.
Didn't really get it ... or I know I would have registered.
Don't be like me. Register now.
This is a huge opportunity to possibly save the life of another human being. The little girl in this video reminds me of a mini-Hannah. I wish I had what Hannah needed so that I could be the one to help save her life. I don't. I am counting on kind folks to register so that Lord willing, if needed, there will be a perfect unrelated donor match for my sweet precious Hannah.
Stop what you are doing.
Stop the blog surfing.
Stop the DVR.
Stop the madness.
Get registered. It is absolutely painless & it is absolutely FREE until June 22nd!!!!!!!!!!!!!!
Monday, June 8, 2009
Camp Hannah Fontana
Well, we are still here ... at Kaiser, Fontana, that is!
Hannah's test came back negative for UTI but tonight when I got back from dinner Jim told me they were testing her for a Staph Infection ... so who knows what is going on!?! This Aplastic Anemia thing is so crazy ... it is so day to day or shall I say, moment to moment. It really is.
All I know is we will be leaving by Thursday to catch our 6:20AM flight to Maryland!!!
It is so strange in this hospital room right now because I have not decorated -- I keep thinking we are getting discharged so I haven't filled the walls with pictures & cards. I guess as soon as I hang up all the pictures they will discharge us right away ... maybe I should get busy with the tape?
Hannah did let me nap today because I got into bed with her & we snuggled & napped together. Worked for me! We got in at least a good hour of wonderful glorious sleep!
Lily is camped out with her Slazas family & going to Disneyland tomorrow to celebrate Katie's birthday! Katie said it was one her birthday gifts to be able to take Lily with her to Disneyland on her birthday...isn't that so sweet? Happy 13th Birthday, Katie -- You are such a fine example to Hannah & Lily -- Thank you for loving them both the way that you do!! We all love you very much!!
HUGE NEWS to report: Daniel, our friend from here on the unit, was told today that he is in REMISSION!!!!!!!!!!!!!!!!!! Thank you, Lord! As soon as his counts are up enough he should be able to go home. Truly, that was the best news I have heard since the day we learned that Chance's bone marrow had started engrafting.
I am blessed. Blessed to have met so many wonderful people through this time of Hannah's illness. Blessed to have great nurses caring for my Hannah -- nurses that know her, love her & care for her from their hearts. Blessed to have so many friends love on us & reach out to us at times when the tunnel of Hannah's illness feels very dark. Blessed to have Kim & her family all love on Lily the way they do & treat her like the princess that she is! Blessed to know that people far & wide are praying for Hannah. Blessed to always have a room to ourselves at the hospital (I cannot imagine having to share a room ALL this time!!). Blessed to have my own hospital bed to sleep in here at Kaiser Fontana (no extra charge, thank you very much!).
God is faithful -- He hasn't abandoned us in any way & He loves Hannah more than I could ever imagine. Thank you, Lord, that You go before us ... to John's Hopkins this Friday .... to NIH next week ... and to where ever You might lead us. I trust You & thank you that You are good & You know the plans You have for us. Thank you, Lord!
All God's best --
Sunday, June 7, 2009
One Year Later ... Remembering Roisin
Your love for others was endless and you always wanted what was best for others and wanted to make sure people felt included & cared for. I am still inspired by your love & selflessness. I have not forgotten you & I feel so deeply for your three precious girls that you left behind.
I can only imagine what this last year has been like for you. It must feel like a blink of time in the presence of the Lord -- what is that like????? I cannot wait to join you one day & I know you will be standing at the gate ready to show me around! I hope you have reserved mansions near by for me & all our friends so we can play practical jokes & short sheet Rachel's bed!!
Lily points with delight at your pictures around the house & at Kim's house. Truly, it is like she knows you. Somehow you must have seen Lily before we had her referral pictures but somehow she must have seen you. I don't know - but I know anything is possible for God (think: parting the Red Sea or raising the dead)!! I don't know how but Lily certainly loves her Aunt Roisin!!! Hannah has very special memories of you & still talks about you & treasures the bear you gave her with your voice recorded in it.
The list is endless of fun times we shared -- even in the midst of your physical & emotional pain. You were the only one that understood so many things & we enjoyed so many laughs about what we'd gotten ourselves into. If only you were still here to laugh with me ...... I love you always & thank God that I will see you soon!!!
Saturday, June 6, 2009
Hospital Weekend
Woke up today -- Hannah might have an infection (UTI) -- that might explain the fever she had the night before we went to Legoland & why she barely went to the bathroom that entire day. She is now "NPO", meaning she cannot have anything to eat or drink, mainly because she is still having "intestinal issues" (read: diarrhea). Sorry for the details of bodily-issues :-)! She was started on an IV anti-biotic this morning so hopefully that will clear up any issues.
I feel like I am getting a cold -- sore throat, etc. I am home today & Jim is at the hospital so that I can get some rest. Jim brought 3 movies that arrived from Netflix so Hannah was very happy to be watching some things she hasn't already seen.
Regarding being in the hospital room & sleeping: for some reason Hannah just hates if I try to take a nap. Seriously -- she can be watching a movie or doing crafts alone & I can be on my computer and it doesn't bother her one bit that we are both doing our own thing but as soon as I put my head on the pillow she is like, "MOM! I don't want you to sleep!! Don't take a nap!!" Last night we both went to bed at 10pm (me since I didn't nap & her since she was given IV Benadryl!) I could pretty much sleep in the middle of Grand Central Station so sleeping in the hospital is generally not a big problem for me - thank goodness!!!
I have received emails & comments about doing stuff for us while we are back on the East Coast. First, let me just say a HUGE THANK YOU!!!! I continue to be blown away by the love & care of others. Truly, I don't know what we'd be doing without the support, encouragement & kindness from others -- it is such a blessing and truly needed & welcomed!!! Today I received a call from a friend just encouraging me not to feel bad about not being so connected right now with others. Even though I know in my heart that no one blames me for being so out of touch, I like to be "in touch". I so appreciated just the fact that she called to let me know that I am "officially off the hook of feeling like I have to be connected with anyone." Thanks, Joyce!!!!
I will give Kim a list of things that I'd love to have done around the house. Yes, I'd like a pool installed but I WON'T put that on the list, I promise :-)!!!!! Just email Kim if you'd like to know how you can help -- THANK YOU SOOOOO MUCH!!!!!!!!!!!!!
Kim's email is kkslazas6 at yahoo dot com
All God's best --
"Guard my life & rescue me; let me not be put to shame, for I take refuge in You. May integrity and uprightness protect me, because my hope is in You." Psalm 25:20-21
Friday, June 5, 2009
Still Here ..
We were literally almost discharged today ... orders were written & the nurse was about to unhook the IV when Hannah started to have some, well, let's just say "intestinal issues". We have been here all day dealing with the "issues" and a minor bit of pain. She has had morphine twice today. Other than that, Hannah is on a small amount of IV fluid but she is still able to eat.
Hannah & I met with the reporter from the newspaper -- she was very kind & a bit amazed at the odyssey we have been on these past 6 months. I guess the whole thing is totally crazy but God has been so good to us during this time even though I feel tired & weary at this moment.
Lily is over at Aunt Kim's & having the time of her life! Kim sent me a precious picture of Lily in the bathtub. She is truly one happy camper!!! I hope we get out of here tomorrow so we can have some time at home with Lily before we leave for the East Coast.
I am begging (and will soon be bribing) Hannah to let me sleep ... how much should I offer as a bribe???
Sleep is extremely valuable to me these days!
Thursday, June 4, 2009
From Hotel to Hospital
Here we are in room #1307 in the hospital. Hannah is happy that we are in a room we have not stayed in before. Her goal is to stay in every room on the unit. Only one more room & she will have reached her goal. I am so glad I have taught her to set goals --- who knew she'd be setting these kinds of goals. :-)
The doctor has us here "just to be on the safe side" b/c Hannah has been having some pain issues. Probably we will get discharged tomorrow or the next day. When the Admissions person came to our room today, I asked if we get a Kaiser mug or duffel bag for being such "frequent fliers" here. At some point, you'd think we'd start getting Kaiser gear :-)
We had a great time in San Diego at the hotel & Legoland -- it was SO nice & we are going back as soon as possible but for longer! Hannah ran a fever the night we were at the hotel but by morning it was gone. I called the hospital a few times from the hotel that night to see if we should come but we just kept an eye on things from the hotel. I am so glad we did since the next morning Hannah didn't have a fever & we were able to go to Legoland & just have fun. Hannah was tired so we pushed her in a wheelchair but it was a very special day of being with her sister, mom, auntie & cousins!
When we checked into the hospital, her numbers were 1.8 white blood cell count, 11 platelets & 6.4 Hemoglobin.
Tonight she got red blood cells & platelets.
Tomorrow I am meeting with a reporter from our local paper regarding a story about putting a face to the cause of donating blood. For all of you out there that donate blood, THANK YOU! The blood & platelets that Hannah has received over these past 6 months has truly saved her life!
I am so tired these days & just feeling so out of it. I hate that I am so out of touch with everyone in my life. Everything has been put to the side since Hannah got sick: E-V-E-R-Y-T-H-I-N-G. I don't think people expect much from me right now but I expect more from me. I hate that I am so out of it with everything & everyone in my life....even my sisters, I barely talk to them on the phone. I hate that I don't know what is going on with any of my friends ... people call me & I don't even call back. I just don't have any energy. Any time I do have, I just want to sleep....I am always so tired!!! I have a bag of stuff from Sears needs to be returned & I don't have the energy to get that done. Our dog needs to get a bath but I can't get myself together to get her to the groomer. I feel like "what is wrong with me!?!" .... but when I really think about all that has happened in this past year, truly it is only the grace of God that I am even semi-functioning at this point.
In one week we will be on the East Coast with Hannah. I am hoping we can do the double-decker bus tour of Washington DC on that Saturday. Hannah saw pictures from when I did that bus tour with her cousins & she wants to do it.
I had a dream last night that Hannah's blood count numbers were back in the normal range. It is hard to even imagine what that day will be like but WOW are we SO READY for her bone marrow to come home!!!!
Tuesday, June 2, 2009
And We Are Off ..
A night is booked for a 2 bedroom suite right on the Ocean in Carlsbad near Legoland @ an awesome internet price!!
Tickets are confirmed for Legoland for Kim & I & all the kids ... FREE, thanks to Claudia and the kindness of Legoland!
Only issue: Hannah's throat is sore. Oh my.
We are still going to go & just play it by ear. I have thermometer packed. Tylenol & throat lozenges packed. Hopefully we are able to make it all happen for a fun time for Hannah... if not, we can just drive back home ... or to the hospital, if needed.
I know we had a lot going on this past weekend ... I really hope Hannah has not caught some kind of bug. I just want to stay out of the hospital until we go to NIH on the 15th!
Please pray for Hannah to feel great & for her to have a wonderful special time before she has to go back into the hospital for treatments....and for Hannah's mommy to have a wonderful time ... I sure need it after these past several months :-)!!!!
