Saturday, March 24, 2012

The Hamburglar Stole My Wi-Fi!!

My excuse for not posting??? The hamburglar stole my Wi-Fi...seriously!
We made it to Ronald's House last Monday.  We listened to the 7 rules spiel and then made our way to our very, very, very small home for the next 66 days.  Our room was literally 12'x12' with two twin beds, a small dresser, a frig for meds, a bathroom, a community kitchen and NO Wi-Fi.  Colors?  Hospital colors...blah beige and blue and dark with not much natural light.  Eric and I smiled and tried to be positive about our new home, but poor Emilie wasn't buying it.  Emilie sadly perfected her three point turns in our tiny space. We were spoiled at the Memphis RMH and were expecting the same here.  Anyhow, Tuesday was a new day and we had a clinic visit early in the morning.  As usual, our clinic visits are never short. We ended up leaving the hospital at noon, returned to our room and Emilie took a nap.  Her energy level is a little low and naps have been the norm around here.  After she woke up, we talked about our accommodations and focused on being grateful for having a place to live so close to the hospital and being able to see our family daily if possible.  We decided that we would make our new space our own, bringing comforters from home and using some handmade art.  It would all be okay.  Tuesday night as we ate in the small dining area we had a visit from Art the Clown.  I really didn't want any company, especially a clown.  Art the Clown is a retired pediatric dentist who uses humor to bring smiles to sick kids at the RMH and at various area hospitals.  Turns out, we do like clowns, we like them very much!

Wednesday was spent investigating our new digs.  We are in the Garden Wing, which is actually the isolation wing for immunocompromised peeps...that's us.  It is a wing with 6 rooms a small community kitchen and it's very quiet. We might see 1 or 2 people a day, but our window looks out onto a lovely garden area with cute little birds and crazy black squirrels.  Thursday was another clinic visit.  Early arrival and another late return.  Emilie settled in to watch the Muppets and about half way into the movie, we got a phone call from the front desk.  It was a call to inform us that a suite was available to us if we could pack our belongings and move within a couple hours.  Are you kidding?  (Back in February I told our social worker that we would like to have a suite, so she put us on the waiting list but I really didn't think we would get one.)  I packed up in half an hour, waited for Emilie's movie to finish, got our new key from the front desk and we high tailed it to our suite.    Impressive considering my mom and Eric delivered a SUV full of stuff the night before.  Emilie was thrilled...no more three point turns to navigate the space.  Our new digs have hardwood floors, a kitchenette, a table for eating/crafts/studying, 2 frigs (one for food, one for meds), a twin bed, a double bed and a good sized bathroom.  Same yucky colors, but we've since "happied" things up (photos coming once we get some good lighting in here.)  Our view is of the same garden area, but just a bit better with a tree close to our window so we can get a better shot of our critter friends.  Did I say Emilie was thrilled??  So happy, that she forgot that she needed a nap and proceeded to make a shopping list for Eric as she had many meal ideas churning in her head.  Yesterday was spent meal planning and a little napping.  Today we planned on a quick trip to the market for the meal planning, but it was raining and I didn't want Emilie out in the elements.  Tomorrow we are expecting our boys; they are not allowed in Emilie's room, but there is a common family room where we can hang out.  Emilie will be making them cupcakes and pasta...probably in that order.  Signs of increased appetite are good and dessert first is just fine with me.

Our new space is large, colorful and happy and it has boosted Emilie's spirits and decreased her napping time.  We are grateful for the upgrade!!!  Thank you Ronald, now could you please have the Hamburglar return my Wi-Fi?  (It's really not that bad, I'm plugged in via an ethernet cable.)

I almost forgot to post the really great stuff.  Emilie's MRD (minimum residual disease) came back negative, but really negative, like less than 0.1% negative.  AWESOME!!!  They also look at how much of Nicolas' cells are present in Emilie with 100% being ideal.  They look at a bunch of different blood components, but the data point that stuck in my head was the whole blood value and it was 99%.  All the other values were 97% and higher.  Another AWESOME!  After Emilie's relapse, my view on life has returned to a day-to-day view and I'm not looking too far ahead.  I don't know what tomorrow holds, but I truly believe that God loves us and He is in total charge of our situation.  I trust Him completely and surrender everything to Him.  I am also so, so grateful for good results from Emilie's first bone marrow aspirate!

Be STILL and know that I am God; I will be exalted among the nations, I will be exalted in the earth! 
Psalm 46:10
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Saturday, March 17, 2012

Grace, Love and Redemption

Photo taken last St. Patrick's day at our wonderful Crazy Train family dinner.
Once kidnapped and sold as a slave to Ireland, Saint Patrick represents such a beautiful picture of GRACE, LOVE and REDEMPTION.  Saint Patrick made the choice after he was freed from slavery to return to Ireland as a missionary. He used the 3 leaf clover to explain the Trinity: the Father, the Son and the Holy Spirit.
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Wednesday, March 14, 2012

Yellow Jello

Right now we are celebrating a negative MRD (minimum residual disease) with a double shot of yellow jello.  Really, we ordered two yellow Gatorades from the kitchen and ended up with yellow jello.  Jello??  Ugh, we're not fans, but it made for a great picture.  Thank you God for "hope" that showed up in a good report!
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Tuesday, March 13, 2012

Brothers Are Good Medicine!

Just a quick update.  Emilie is continuing to do well.  She is eating and drinking a bit.  Her first real meal was salmon and rice and the following day, she had salmon and rice. Pretty darn funny.  Emilie has an aversion to all hospital food, so it was shocking when she wanted salmon.  I mentioned in a previous post that Nicolas had salmon while in recovery from his bone marrow harvest.  One of our docs, wanted to know the Erickson salmon connection.  Must be in the genes!!!  Emilie is off all IV meds and taking everything by mouth.  She is still on liquid nutrition but that was reduced from 24 hours to 12 hours.  Good progress.  I met with one of the BMT coordinators today to discuss discharge instructions; we are expecting to move to RMH next week.  We were hoping a bit sooner, but 1.) they need to stabilize one of Emilie's meds, 2.) Emilie needs to eat and drink more and 3.) she is getting an IV only med until day 35.  Day 35 is next Tuesday, so we will probably be moving then or Wednesday.  The stem cell wing at Ronald's house has 6 rooms, 2 of which have kitchenettes.  We are hoping that Ronald is saving us a room with a kitchenette!!

Today, Emilie had her first of many bone marrow aspirates which always makes me a bit nervous since her relapse.  One of her docs came by to let us know that her "marrow looked beautiful".  Awesome news!!!  The sample is looked at here by LPCH pathology, it's also sent to Washington to determine the exact (if any) amount of disease and it's sent to a lab to look at host and donor cells.  Tomorrow or Thursday we should know really firm results.  Thank you Lord for good results and for keeping us afloat on our journey.
May the God of HOPE fill you with all JOY and PEACE in believing, so that by the power of the Holy Spirit you may abound in HOPE.  Romans 15:13
Oh, and brothers are truly good medicine....

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Thursday, March 8, 2012

"Eees A Luuuv Day"

I met a man in the community kitchen yesterday and we started talking.  I was really not in the mood to talk as I was just "done", but God nudged me to pop out of my shell and at least say "hello".  The "hello" was followed by asking how his child was doing and he told me that his 3 year old daughter just had her transplant yesterday.  I learned that he also had a "frosting", his 2 year old daughter who was the perfect match for his older daughter.  Sweet!!  He then asked about our story.  I told him everything, with the exception of the exact day of transplant because really, not many men are interested in specific details (Hi Eric!).  So, the first thing he asked was "what was the transplant date".  I told him the 14th...he thought, got a bit teary and then replied "Eees a luuuv day!".   You are right, fellow transplant parent, it was a love day!!!  Thank you God for taking me out of my isolation zone and blessing me with another "frosting" story of hope!

It seems time really flies here in the hospital which is one of God's blessings!  Much has happened since our last update.  Emilie is doing very well.  The official opening of her new bone marrow factory, or engraftment, was March 1.  Her platelets are also rising on their own, which is a very good thing.  The doctors are very happy with her progress.  One of our attending docs has told Emilie a couple times that she must tell Nicolas that "he has really great bone marrow". Ha!  Because of engrafting, Emilie is off of antibiotics and because the muscositis has cleared up, she is able to take most of her meds by mouth.  More good things!  Emilie is also recovering from extremely large blisters on her feet.  The radiation/chemo combo did a number and caused baseball size blisters on both feet.  Thankfully, they are healing well.  Her mouth, throat and foot pain has subsided, so they took her off morphine and are now weaning her off another pain med.  Today, the docs said that if she can take more fluids by mouth and eat a bit, they will send us off to live with Ronald McDonald.  More goodness!  The Emilie we know and love is back as of three days ago...awake during the day, chatty, smiling, doing crafts, doing school with her teacher from LPCH, etc.  Cancer treatment is really a crazy ride, so it's nice when we see some normalcy return.

Let us give thanks to the God and Father of our Lord Jesus Christ, the merciful Father, the God from whom ALL help comes! He helps us in ALL our troubles, so that we are able to help others who have all kinds of troubles, using the same help that we ourselves have received from God.  2 Corinthians 1:3-4

Because I have a hard time posting without a photo....my three "frostings"!!
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Tuesday, March 6, 2012

#10


I am proud of my #10!!  He is persevering with a family life that is chaotic.  School, baseball, church, friends....he continues to engage.  He's showing me what a strong, courageous young man he is.  Never give up, #10, never give up!  I love you!
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