Bone Marrow Transplant

Okay.  I feel much calmer now, so I am ready to tell you all about our upcoming adventure.

We have known all along since we got Sarah's diagnosis and treatment plan that this high dose of chemo and bone marrow transplant were going to be inevitable.  We were told by the oncologist that Sarah would be in the hospital for about 2 weeks, and after that we would be done, and that she would probably be able to come with us when we went to visit my family in Arizona for Thanksgiving.  So, we were justifiably shocked when the transplant team doctor and nurse met with us and told us Sarah would be in the hospital for not 2 weeks, but 4-6 weeks at best, and that after she comes home, she will be under tight restrictions including no travel, even no public places, for about THREE MONTHS. 

So....here is what we have to look forward to.  The next week and a half, Sarah will be going in to have tests done, and then we get admitted to the hospital on October 12.  She won't be able to leave her room--AT ALL--for the entire hospital stay.  She is only allowed to have 5 total visitors, and that is pretty much limited to the people who are going to be taking care of her.  It is a special room with a special air filter so that she can't breathe the normal hospital air.  Whenever we go to be with her, we have to put on a clean set of clothes.  Shoes come off at the door.  Any toys need to be wiped down.  There are all sorts of restrictions on food.  All of her clothes need to be washed separately from the rest of the family, and I have to pack each of her outfits in separate plastic bags.  All dirty clothes and towels need to be put outside the door right away.  Everyone who comes in her room will have to wear a mask except us. 

She will be given a very strong cocktail of chemotherapy that will have worse side effects than she has experienced so far.  Hopefully they won't be too bad.  This chemo is supposed to wipe out every stray cancer cell that might be hiding in her body anywhere, and hopefully (big time hopefully) also kill the last tumor in her eye.  Unfortunately it will also wipe out all her bone marrow.  When they are done administering that after a few days, she will get the transplant.  It is actually a stem cell transplant.  They will give her her own cells they harvested early on, and that will make brand new bone marrow.  (And seriously some people do not believe in God...They honestly think nature could evolve something as miraculous as that??  Um...yeah...)  Soon the bone marrow will start making blood cells again, and her counts will start to go back up. 

A couple of days before we go home, our house will need to be cleaned as well as it possibly can.  (This part I am actually looking forward to.  My house is NEVER spotless--all at the same time.  It's a dream of mine, actually.)  Everything, including curtains, walls, floors, all the carpet needs to be steam cleaned, everything that can be, bleached. 

Even after we come home Sarah will still have many restrictions.  Like I mentioned, she won't be allowed to really go anywhere.  We will not be able to share food with her, whatever I make, she has to be served first so none of our germs get mixed in, she will need to have separate baggies of things like chips or cereal.  Things like that.  And these restrictions will go on-----until January.

Soooo, we had no idea.  And I did panic.  Then yesterday, I got out of the house, and I spent time in the grocery store parking lot just praying and spending time with God, listening to some good praise music and praying some more.  Then I prayed as I shopped, just being with God and listening to what He had to say to me.  And peace and acceptance began to fill me up again, and I realized that my little mantra I said so many times a few months ago had stopped being part of my vocabulary. 

Take it one day at a time.

Such a wise little phrase.  Who thought of that?  Oh yeah.  God. 

So today, I got the boys' haircuts done and made a good to-do list, and each day I will check things off of it.  And I will pray and trust God and try not to worry.  And that's my plan.  

 She loves the hospital scale. : )

 We'll do a lot of coloring and drawing pictures and shapes again I'm sure.

She loves this piano.  And yes, she sure did have a lot of hair. 

I know I've been asking for prayer a lot, but I feel like now we need it more than ever.  We thank you so much for thinking of us and praying us through.  We love you all, even you lurkers who prefer to be silent supporters. : )  

Take therefore no thought for the morrow:  for the morrow shall take thought for the things of itself.  Matthew 6:34 

Tea Party!

Oh me, oh my...we talked at length with the transplant team nurse today, and to say I am overwhelmed would be an understatement.   Please do be praying for us and especially Sarah, since the next two weeks will be a whirlwind of appointments, tying up loose ends and cleaning, and trying to avoid GERMS at all costs.  We will be heading to our home away from home, (the hospital) it looks like on October 12, and staying there for 4-6 weeks most likely.  That's a long time...  I don't have time to tell you all the details tonight, so please enjoy these adorable pictures instead. : )

Grandma and Grandpa's House

My wonderful parents-in-law both grew up in the same town.  They went to the same high school, started dating during their high school years, and ended up getting married at 19 years old.  They're even the same age. : )  They bought a little house on a couple of acres on a dirt road on the edge of a small town in the same area where they grew up and fixed it up.  They raised 3 boys there on that dirt road.  Each of them came from big families--5 kids in one and 7 in the other, and all of the siblings grew up and settled down nearby with the exception of just one, who moved down south after a while.  So, my hubby's childhood home often was a gathering place for grandpas and grandmas, aunts and uncles and cousins from both sides of the family as he was growing up. 

After all the boys were grown and out of the house, my in-laws began plans to build the home they would spend the rest of their days playing with the grandkids in--right next door on that same dirt road on the other half of their property.  And build it they did.  A nice, big, ranch style home with extra bedrooms and a great big sunny room with plenty of space for lots of grandkids to wrestle around and make a lot of noise.  (With glass sliding doors that could shut if it got too noisy.)  : )  They've lived in that house for about 12 or 13 years, and we always love visiting there.  It's cozy and comfy and welcoming, and it feels like home, even though neither of us has ever lived there ourselves. And most of all we love the people who live there, so that's the best part about it...

But my in-laws have another home.  They have a log cabin my father-in-law also built, up at the youth camp my brother-in-law runs in Morley, Michigan. It is another great place.  It's cozy and homy, and it's brand new.  Just finished this year.  It has one amazing screened-in porch on the back, overlooking the woods and a little rippling creek.  Simply beautiful!  But the reason they have a home up there is not for the view.  They know that the most important things in this life are not material.  They have spent their summers and other parts of the year up there for years now, serving the Lord in any way they can.  Washing, cooking, cutting grass, helping build things and doing maintenance jobs, and investing in the lives of the kids who come to camp and spend time there.  

And now they have decided that they will rent out and eventually sell their home on their quiet dirt road  that's a hop skip and a jump from all their brothers and sisters and the familiar places they have always known (and their old house where they raised their boys that their son owns now) and move most likely for good into their sweet little log cabin up at camp.  I know it's not easy, especially for my mother-in-law, because you know for us girls, big changes like that are tough, especially when it comes to sentimental-type things. But one of the things we love about them is that they know that what's most important is not always the easy road.  They are willing to do the more difficult thing because it's the right thing.  And they know that the blessings God wants to pour out on those who love Him, and are willing to serve Him no matter what the cost, are the greatest blessings we can ever imagine. 

I am excited to see what God is going to do with my wonderful second parents as they continue on their journey, letting go of what's behind and pressing on serving Him.  And I can't wait to see how He is going to bless them for their obedience...(I think part of that blessing is going to be frequent visits from US!  heehee) 

We just got back today from visiting them at their old house as they get ready to leave.  I must admit it was pretty hard to say good-bye to that house.  So many memories. What is it about houses and saying good-bye?  But like I said, I'm sure the best is yet to come.

Today's thoughts at the hospital

Today Sarah had an MRI.  It was uneventful as far as the scan went.  We went, she got her froggy hug, light on her finger and tubees drink (of sleepy juice) and went to sleep.  Got the scan but had no idea, woke up, had a snack and some apple juice, and we went home to play. 

While she was having the scan done, I had some time to myself.  So like I've done in the past, I went upstairs to the cafeteria and sat alone with coffee and a good book to pass the time.  I actually really like the cafeteria at the hospital.  Two entire walls are floor to ceiling windows.  There's something about the atmosphere in there that I like.  I love watching the people. 

But today for some reason-- maybe I was extra tired...or maybe it was the discouraging news about that stubborn tumor from the other day-- I had a really hard time as I was sitting there.  Probably the worst I've felt about this whole thing since the very beginning when we got the diagnosis.  In fact it felt a lot like I felt that first week all of a sudden, like a wave washing over me, and ironically I was sitting at the very same table I was sitting at when we first got the diagnosis and I called my mom to tell her about it.  I had the picture in my mind of Peter walking on the water keeping his eyes on Jesus, but then as soon as he he looked around he started sinking.  And that was how I felt.  Like I was starting to sink.  The feeling didn't last all day, thankfully.  I'm doing better now again. But as I was sitting there letting my mind begin to wander to what could possibly happen, I was also looking around the room.

So many people in that room, all ages and nationalities.  Rich, poor, professional health care workers, patients and families, college kids wiping tables.  And I thought about how short life is, and how short it really can be.  I thought about eternity, and I wondered how many of those people think about it.

I wonder if you have thought about it lately.  I don't mean to be morbid or depressing, but it is true that none of us will last forever.  We believe that Sarah is going to make it through this.  But I ask you today to think about your eternity.  It's too important not to think about.  And if you have questions, seek the answers.  The Bible says that if you seek, you will find. 

These are written that ye might believe that Jesus is the Christ, the Son of God; and that believing ye might have life through His Name.  John 20:31

Update...

Hello faithful friends, family and guests.....

Well, we got back from the surgery center with Dr. Aaberg.  He did an exam under sedation and some cryotherapy (freezing treatment), but this time didn't do the shot of chemo.  Cassandra went with Sarah and me this time because she wanted to be there to hear the news about any progress with that VERY PESKY tumor. 

Turns out she shouldn't have been anxious to come. The bad news is, that tumor did not change.  AT ALL-  since the last time he did this about 4 weeks ago.  Oh, how discouraging and frustrating it is that this teeny little thing,  only about a millimeter across, is so stinking stubborn!

You know, it is at times like these that you wonder what God is doing.  I know with all of my heart and being that God is in complete control.  Friends who know Him, and those who don't, I can tell you from experience that He IS.  He is here...He is only good...and He is always loving.  It is the very definition of who He is.  My faith doesn't waver even for a second, and this kind of thing doesn't stop me from loving Him and knowing all of this.  Not anymore, anyway.  I've had my share of times when I couldn't say that I always 100% believed that, but I have seen Him come through so many times, not only in my own life, but in others' lives, that I simply can't help but know it. 

But I still wonder why, just like we all do when things like this come into our lives.  Why doesn't God just reach down and squash that tumor?  He took care of the huge one in a couple of weeks.  He took care of the other small ones in her good eye.  They are all dead and gone except for one measly stinker.  Ugh. : (

So, we continue to wait on Him, and trust Him, and trust that He is giving the doctors wisdom about what to do next.  The next thing on the schedule is an MRI on Wednesday, just to make sure that everything else in her eye sockets and brain still looks clear.  Then on Friday the tumor board meets to discuss all the recent results.  We will meet with Dr. Smith, Sarah's main dr. in charge of treatment soon to hear the main points of the discussion and their recommendations as to what's next.  And it looks like that is going to be a very high dose of chemo and her bone marrow transplant along with it, probably the second week of October or so.

There is some good news along with the sad news.  Dr. Aaberg is not surprised that this treatment is not working well, and I find that a little comforting at least.  The reason why the thing is so stubborn is because it is a seed that has broken off from the retina wall.  There is not good blood flow inside the eye, so there is no great way for the treatment to really penetrate that tumor.  He said that there is a good chance that the high dose of chemo she will be getting will take care of it.  He is discouraged, but not surprised and not despairing.  Also, Sarah is doing really well today!  The last two times she had this treatment, she had quite a bit of discomfort and pain, and this time she is already opening her eye and seeming fine.  That is a huge praise!

So, we press on.  I am really feeling now more than ever, the need to pray with fervency.  This tumor is strong, but God is waaaaaaay stronger.  I think my faith has been lulled to sleep a bit lately, and today was a wake up call for me.  Will you pray with us? 

Thank you so much for staying on this journey with us!  We love and appreciate you!!

Camping!

After a busy summer, filled mostly with appointments we would rather not have had to attend, we finally had a week when chemo effects were pretty much done, and we could go ON A VACATION, just our family, for 5 days!  Well, sadly without Cassandra because she just happened to get a job and had to start the very week we were leaving.  It figures.  Oh well.  We survived without her, even though we missed her, and I'm sure the money she made mostly made up for any sad feelings on her part.


So, we went camping in Ludington, MI.  It's a really beautiful area, and the weather was up and down, but mostly good, and we were very thankful.

I am in a fog today, some from the cold I have, some from exhaustion that a week of camping brings on, and some from the knowledge of the piles of laundry I am so not looking forward to.  But, so thankful to be home!

It was Sarah's first week of camping.  At first she wasn't sure about sleeping in the trailer, but she did just fine.  She is such a little honey.  Just squeezing every drop out of life. I am so glad she was feeling well and happy!

Little update about cancer related issues:  Sarah goes in on Monday morning for her presumably last appointment with Dr. Aaberg where he will do an exam to check on the progress of that tumor, and also more cryotherapy (freezing treatment) and maybe one more dose of chemo in that eye.  These are the worst weeks we go through with Sarah, as she is always in quite a bit of pain for a long while afterward.  Please pray that it won't be so bad for her this time.  Then on Wednesday she has an MRI, and on Friday, the tumor board including all her doctors will meet to discuss what comes next.  Please be praying as this will be a busy week!

Sunday Snapshot--Brother Love

When we were going to bring Sarah home last October, I knew that our boys would be great big brothers. But I had NO idea that coming up on a year later they would still be so loving--so utterly selfless with their little sister. They go above and beyond what I would ever expect of them in helping out, in playing with her, everything. If I am sleeping in, they will get up with her in the morning, even getting her cereal and a sippy cup of milk. They play with her even if they don't feel like it. Even Ben, my 6 year old is so patient with her. Having a little sister has been the best thing for them as they have learned so much more about caring for others and putting others first. And they have learned how really really wonderful it is to be a family for someone who needs one. I am so thankful for my boys and so blessed to be their mom!

Choices, choices...

Tonight I had the house to myself.  Well myself and Sarah, and she is in bed.  That so rarely ever happens, and so as soon as I knew I was going to be alone, my mind started buzzing with the possibilities of how I could spend my time.  So many choices...  I could watch a movie I have been wanting to see that my sweet hubby would never want to watch.  I could read my book for a few hours in silence while eating the chocolate I picked up at Family Fare today.  I could write in my journal. I could call one of the long distance friends I've been meaning to call.  Or I could call my mom.  I could hang out on the computer reading blogs like I normally do.  All of these things were vying for my attention, and I was excited about doing all of them, so I couldn't make a bad choice.  And then as I was about ready to make my final decision....I remembered. 

I remembered that it's been a while since I have spent some good, quality time with my Savior. And my heart broke as I realized that not once today as I got ready to spend my evening alone did I even consider spending any of the time with Him. 

And then as I picked up my Bible and headed over to the couch, my heart broke a little more as I realized that I was sad about the fact that I was not watching my movie or calling my friends.

Dear friends,  it is a sorrowful thought that the things of this world so easily pull us away from our best Friend.  My life is full of blessings and joy from Him.  I daily praise Him and thank Him for everything He has given me.  I trust Him as we travel this road with Sarah.  I revel in my life as a mom and the sheer delight my children are to me.  I do pray and read my Bible.  But somewhere along this busy road dotted with clinic and hospital visits, cleaning, meals, laundry, trips to the zoo and the park, and now adding schooling into the mix, my vibrant relationship with Jesus somehow became something I quickly do before I rush into my whirlwind life.  

Tonight He reminded me.  Instead of jumping into my movie or my book, I repented of my selfishness and spent the time with Him. 

And the longer I sat there, the better it got.  I forgot all about wishing for those other things, and remembered how truly wonderful it is when I let HIM fill me up instead of STUFF all the time.   

This was the entry from my devotional, Jesus Calling, by Sarah Young:

"I am the resurrection and the Life;  all lasting Life emanates from Me.  People search for life in many wrong ways:  chasing after fleeting pleasures, accumulating possessions and wealth, trying to deny the inevitable effects of aging.  Meanwhile, I freely offer abundant Life to everyone who turns toward Me.  As  you come to Me and take My yoke upon you, I fill you with My very Life. This is how I choose to live in the world and accomplish My purposes.  This is also how I bless you with Joy unspeakable and full of Glory.  The Joy is Mine, and the Glory is Mine; but I bestow them on you as you live in My Presence, inviting Me to live fully in you." 

John 11:25--I Am the resurrection and the Life.  He that believeth in Me, though he were dead, yet shall He live. 

It always amazes me how He is so faithful to be there, ready to breathe that Life into my dry spirit again every time I come willing to die to myself and accept it.  He is so good to us.  I hope you know Him too, and if you don't or are not sure, please contact me!  I would love to share Him with you.

Sunday Snapshot--Dad

I got this idea from Stephanie's blog, Ni Hao Ya'll.  Each Sunday she posts pictures instead of a normal post.  I thought I would do that too, and each time post some of my favorite pictures that may or may not be recent. 

This week I am focusing on my wonderful hubby, who probably gets the least amount of mention on this blog.  But he is such a great husband and daddy.  We are so blessed to have him!!

Welcome to my Blog!! It's nice to have you join me!!

I have a nifty little gadget on the side of my blog.  It's not really important, but it's cool!  It tells me when someone visits my blog and roughly where they are from.  So I can see that people from:

Michigan,
New Jersey,
Nevada,
Washington,
Arkansas,
Ontario,
California,
Oregon,
Maine,
Colorado,
Indiana,
New York,
North Carolina,
Ohio,
Kentucky,
Minnesota,
Georgia,
and Texas
and MORE...

come and read, or at least stop by and visit...me and my blog.  I think that is awesome!  And I know I don't know people in all those places, so I love it that people are finding us and taking the time to catch up on what is going on with our little family, and I know that many of you are probably praying for us and Sarah.  Thank you so much!

And just so you know, I am really a people person, and enjoy two-way conversations.  So, if you would ever like to just leave a little comment saying howdy and introduce yourself, I would love that!  Then I would feel more connected to you, and not so much like I am writing a newspaper.  : )  And then maybe I could find your blog too if you have one. 

And again, thanks for reading!  I feel really honored and blessed to have so many people that I don't even know taking the time to visit. 

(And by the way, Sarah is doing fine after her chemo, and I think maybe even doing a little better with her eye pain.  You can keep praying about that because it's been hard for us to watch her having trouble.)

Have a wonderful weekend!

"Actually, what I'd really love to play with is bubbles."--a quote from a sweet little boy in the clinic yesterday...

We are two out of three days into Sarah's round 5 of chemo.  This time the doctor let her get the treatment outpatient instead of having to stay in the hospital for 3 days.  It's been nice sleeping in my own bed and not having to get up at the crack of dawn when the nurses change shifts at 7...(that's verly early for me, folks.) ; ) We've been spending our time there playing, reading books and watching youtube.  Thank the Lord for that!  It's a lifesaver when you have a toddler! 

 We spend quite a lot of time in the clinic. It's like a doctor's office that's attached to the main hospital by a walkway over the road.  Sarah loves going over the bridge!  We spend more time there than the hospital.  Typically we are there at least once, sometimes twice a week.  We spend anywhere from 1 hour to 7 or 8 hours each time.  The purpose of the clinic is to have blood draws, get transfusions there if you need them, and sometimes get chemo there, like today.  All of the kids there as far as I can tell are cancer or blood disorder patients.  Most are or have been on chemo.  It's a different world in there, but really...it's not. 

Before I had a child with cancer, just the very thought of that could send chills of fear and dread down my spine.  Once, I was at the hospital with Cassandra's mother who had cancer herself.  I was getting off the elevator, and here came a little child mostly bald, looking pale and sickly being pulled in a wagon.  The parents and nurse with her were talking cheerfully to her, and I tried not to stare, thinking that that was probably one of the saddest sights I'd ever seen.  I just couldn't imagine anything worse.

Fast forward about a year, and a few weeks ago, a nurse was pulling my mostly bald little girl through the hospital halls in a little red wagon with me at her side, talking cheerfully away.  Pretty ironic, I know, but now my picture of the whole thing has changed.  Of course I still think childhood cancer is one of the saddest things that there is, but my eyes are opened to all the dimensions of it now.

Let me describe to you the clinic, for example.  You come in and the front desk, girl, normally Ashley, greets you with a big smile.  Then you go and see Patti, who gives Sarah her favorite things--a froggy hug, takes her temperature, lets her get up on the scale, and measures her.  She smiles and tells Sarah how cute and smart she is, and Sarah smiles and laughs because she's been waiting for this since the last time we were here.  Next, we go and see Sarah's nurse, Annie.  She takes Sarah's blood, and my strange little girl loves to watch it.  Then we go and sit in the waiting room.  Sometimes it is full of people.  There are babies, little kids, big kids and teens in different combinations on any given day.  Their parents are there, normally looking bored reading magazines, or chatting with nurses or social workers.  There are staff and voluteers there who's only job is to help the kids have fun!  Really, they go around talking and joking with them, and finding fun things for them to do.  What an awesome job!  Sometimes the nurses or PA's come and love on  Sarah a little bit.  They like to show her their watches and bracelets, and sometimes, like yesterday, they give her one they brought just for her. The kids may or may not have hair, but the most notable thing about them is that they are really very.......NORMAL.  Most of them are doing crafts, puzzles, playing with toys or playing video games.  A few of them look frail and have some trouble walking around.  Some are in wheelchairs, but mostly they are typical kids.  You don't really have that overwhelmingly sad feeling in there because the kids are laughing, playing, and there's one that's kind of a handful.  It feels like you are anywhere else but in a children's oncology clinic.  When I've been wheeling Sarah around the hospital halls in a wheelchair or wagon, I don't really like making eye contact with people, because I  don't like seeing the sad look in their eyes.  I want to say to them, "Hey, it's okay.  She is a normal kid.  We are trusting God, and she is most likely going to get better!" 

Now of course I am not saying that everything is hunkey dorey, and children having cancer is a barrel of laughs.  But I am saying that when you are in the thick of it, there is a spirit of optimism that prevails.  Like I said, some of the kids are very sick, and that is hard to watch.  But all of these kids that I have seen have something special about them.  It's a toughness and a resilience about them.   They've experienced more in their little lives than many adults have, and I think it changes them, normally for the better.  They are fighters and survivors.  And that attitude spills over, filling the place.  It's actually kind of a cool place to be, surrounded by these little warriors. 

And that's exactly what they are.  Little warriors.  They just happen to be busy with bubbles right now.