Nash Family Blog

Letting It Out

I've been struggling as of late with all the pain, emotion and depression that comes with having a child fighting Leukemia.  I was just looking back through the pictures from our family vacation last summer to Hilton Head Island.  It would have been about 3 months before Leah was diagnosed.  Life was so simple.  We were happy and looking forward to the arrival of our baby boy.  Leah didn't look sick at all.  She looked so radiant, so beautiful and had a glimmer in her eye.  There was a tender innocence there that I don't see as much anymore.  Mostly because she has to know about things like ports, chemotherapy, procedures (spinal taps) and Leukemia.  So much has changed.  I feel that she has been robbed.  That we all have been robbed of wonderful days.  Days that should have been spent in the magic of childhood.  I just feel like every day is covered in a fog, a weight.  There's always something dreadful looming on the horizon.  I'm angry at this disease.  I'm angry that it has hurt my little girl.  I'm angry that it has hurt our family.  I'm angry at how I feel it is destroying me.  I just can't seem to let go of the hurt and the anger and I don't feel as if I've been truly happy in a long time.  Most days it seems as if I'm barely keeping my head above water here.  How did I go from someone who could manage the household to completely losing control of everything?

And yet....God is merciful and kind.  He knows my pain and wants to comfort me.  I know this more than anything when we are in His presence at church.  When I look at our icon of the Theotokos I know that she hurts with me and she intercedes for us.  I'm tired, I'm broken and I'm weary.  But isn't that when God does His best work in us?  Surely good can come of these difficult days.  

I know she is in remission.  I know she can be cured.  I know it will only be done by God.  I hate the journey though and these days are hard.  

Grace and peace be to you all tonight.  God bless.

An Ok Day

Today has been fairly uneventful.  Leah managed to only have 1 steroid meltdown today and in general has been feeling good.  She has really taken to mothering Aaron.  Last night she wanted to change his diaper and get him dressed for bed.  Then today he was fussing and I found that she had gone to the fridge to retrieve a half eaten jar of baby food and had a spoon and bib ready.  She was on her way to feed him.  Too sweet.  

Debbie will be in tomorrow and we are all looking forward to her visit.  Not much else is going on though.  It should be pretty quiet until clinic on Tuesday.  Here are some pics of the kids from the last few days:

Ok, I need to go make the chocolate chip cookies that I promised the kids.  They keep asking if they are ready yet....

Out of the Hospital

Leah was admitted on Monday and we got her home Wednesday afternoon.  They still aren't sure what was going on with her bottom and we continue to treat with warm baths adn cream several times a day.  Her spirits have been better today than they have been in about a week.  She's actually been out of bed all day, playing, and generally happy.  We have been advised that the next two weeks of chemo are going to be very rough and to expect her to feel sick (flu like), run fever, and to make extra trips to clinic and possibly the hospital.  Debbie is headed in maybe Sunday or Monday to give us a hand during this time.  I'll be glad when this phase is over and we get settled into the routine of the Maintenance phase.  Her hair is extremely thin.  Many have commented on how good she has looked - how she doesn't look sick at all.  Not anymore.  The thin hair coupled with the steroid weight gain makes her look very sick to me.  It breaks my heart.  That's the update and I'll post as things change.

Not Feeling Good

Leah has not been feeling great for several days so we got her in to clinic today to be checked out by the doctor.  She has a yeast infection on her bottom and they are running additional blood work and checking for a UTI.  In addition her plasma count has dropped.  So she is more than likely being admitted to UKCH tonight for a plasma transfusion, antibiotics, warm baths and cream for her little bottom.  Adam is staying over with her and I'll be home with the other kids.  

Thinning

Leah's hair is finally coming out.  The last 24 hours she has shed like crazy and at this rate it could be gone by the end of the week.  We'll see I suppose.  She is not too upset about it.  She's still feeling really bad and has had some intermitent symptoms that we'll need to keep an eye on and maybe call the clinic about tomorrow.  

Tough Days

I'm pretty sure that this whole leukemia thing sucks.  Not just for us as her parents, not just for the way it affects her siblings, but mostly for Leah.  The steroids are wreaking havoc on her little body this week.  It has been an absolute nightmare.  She feels bad and she looks bad despite the fact that her counts are good.  She's highly emotional requiring 110% of me and making it impossible to care for the other 3 kids much less try to do any other work around here.  And it isn't her fault.  It's the meds.  She'll be done with them on Tuesday morning, but they'll be in her system for awhile.  

I'd like to say that we're getting through and I'm handling it ok but I'm not.  I'm stressed, I'm depressed, I'm angry, and the kids are paying the price.  I know these days will pass, but right now I'm trying to live through one hour at a time.  

Leah has become extremely lethargic.  She sits around most of the time watching movies and eating.  I'll be glad when this passes.  As bad as it is for the rest of us I can't imagine how bad it is for her.  

The kids are all in bed and 3 of the 4 are asleep so I'm going to watch American Idol with my husband.  Later.

Book/Movie Review

Quick Leah update....clinic went well and she was a great patient!  Mega steroid hit this week so pray for her little body as it gets slammed with steroids.  

Ok, I don't normally do book or movie reviews but there are 2 children's books and one movie that I have really liked lately.

Adam and I watched The Island.  Here is the blurb from Netflix:

Father Anatoli (portrayed by former Russian rock star Pyotr Mamonov) lives a hermitlike existence in a remote Russian Orthodox monastery, where he's visited by people who believe he has the power to heal, see the future and exorcise demons. But Anatoli's odd behavior confuses his fellow monks, who are unaware that he's tortured by a past sin and considers himself an unworthy fraud. Pavel Lungin directed this poignant parable.

We really loved this flick.  Note: It is in Russian so you have to be comfortable with watching and reading subtitles at the same time. :-)

As for children's books....Isaac is in to dinosaurs in a big way.  At Christmas he received "How Do Dinosaurs Say Good NIght?" by Jane Yolen & Mark Teague.  A great bedtime book, especially for little boys.  The second one is "Where The Wild Things Are" by Maurice Sendak.  This was one that I loved as a child and although the creatures appear to be monster like Isaac thinks they are dinosaurs and is completely infatuated with it.  I borrowed it from the library but may need to purchase a copy for him.

Ok, that's all for now.  Kids are down - off to relax.

I'm Frustrated - I'm Venting

Does anyone else have kids that have a mommy's up radar?  I was up and in the shower at 6:30 this morning and was barely wet before 2 of my kids came in the bathroom.  That is a full hour before they normally get up.  Is one quiet hour in the morning before the storm hits too much to ask?  

Quick Update

Leah is doing much better this week.  She is starting to lose more hair though.  To be expected I suppose.  We'll be back in on Tuesday.  Although this is her week off of steroids we are getting the steroid side effects now.  I guess it had to build up in her system before it hit.  She's crazy hungry, has cravings and is very emotional (sometimes sad & alot of time short tempered).  Take a pregnant woman and mix it with PMS and cram it into a 5 year old.  There you have it.   She appears to be having the muscle weakness in her legs again and you can see her shake when she does something strenuous.  She bounced back from that pretty quickly last time and I expect that she will again.  She continues to have high spirits and looks so beautiful and grown up.  I'm not sure if I mentioned that she got her hair cut.  Anyway, here is a picture of the kids and Leah with her shorter hair.

And of course Aaron:

Isaac's vocabulary is really expanding although I don't always understand what it is he is saying.  His favorite phrases right now: Orange is my color (his favorite color) and Where daddy be?  He continues to be a rough and tumble wild man to the core.  I think he might be an MMA fighter at heart.

Mae grows more beautiful every day.  She is energetic and happy and a joy to my life.

Aaron is finally sleeping in his crib so I am sleeping better.  He is fat, fat, fat and a happy smiley little guy.  He's trying to sit up, eating a variety of foods now and ready to be on the go.  If he were mobile he'd be hot on his siblings heels.  I'm sure it won't be long.

Ok, signing off for tonight.

My Heart Breaks

This lady had a daughter being treated at the Kentucky Clinic where Leah goes.  Although I did not personally know her, I remember her from stays at the UK Children's Hospital and from seeing her at clinic.   http://www.wlextv.com/Global/story.asp?S=9970012&nav=EQlpeEOM   A sad story.  Please pray for her family, her children and especially her daughter Lexi who not only battles her illness, but has lost her mother.  God grant grace and comfort to this family.