We passed a very important anniversary this past week & will celebrate yet another this coming week.

First of all, Laken passed the 4 yr. anniversary of her diagnosis (April 25, 2005).  That is a huge one in and of itself considering that she was given only a 30% chance of survival.  Such were the survival odds for infant leukemia diagnosed in those babies less than six months of age at that time.  Thankfully, that number has come up some since, but so much still remains to be done. 

They say that pictures say a 1,000 words, so I won't spend much time discussing the past now.  Instead, please take a second to look at the "PHOTOS" section here, all 5 pages.  The pics say far more than we ever could here.  This little girl has come so very far and worked so very hard to get to where she is today (thanks also to over a year of post-transplant developmental therapy, six months of physical therapy, and about a year of occupational therapy for food/eating aversion).

We didn't really take a lot of pics while she was in treatment (most of the time of which she was inpatient & taking care of a baby going through chemo, helping our baby girl survive pneumonia in the middle of it, and me breastmilk pumping constantly doesn't leave much time), but we do have a few.  Also, we found it very difficult and far too emotional to capture images of such suffering in our daughter especially not knowing then whether she was going to live or not through the pneumonia, let alone her allogenic (unrelated) donor cord blood stem cell transplant.  My favorite pics are the current ones of our "normal" little girl who has no memories of any of her struggle.   We are forever thankful to God and to all who supported and our baby girl through that time. 

So, what things are on Laken's radar at four years post dx (our radar I guess)?  Well, she has impending neuropsych testing at Riley, probably this fall or next as part of her annual oncology/stem cell testing.  Daisy's Mom, Emma, recently did a wonderful update for Daisy.  She basically mirrored nearly every concern and question that we are currently going through with Laken.  As Emma stated, with less than 200 infants (of less than six months of age) being dx'd with infant leukemia in North America in the last several years, simply due to the rarity of survivors, there are almost no known studies of the long term cognitive and neuropsych studies done on these infant leukemia survivors.  Simply put, the docs don't really know what to expect in these survivors.  We are definitely very vigilant about watching her for signs of learning difficulty, anxiety issues, etc.

Laken is old enough now to start asking questions about why she goes to Riley, etc.  We want to be as open and honest as we can with her without scaring her to death or burdening her with the past.  Certainly we don't want her obsessing about her own health or the future for her as we do anyway.  For now, we are trying simple, age appropriate responses to her questions.  She wonders why we have very little home videos of her as a baby (but don't most parents have more home videos/pics of their firstborn anyway?)  I was really surprised that she didn't ask a ton of questions as I was putting her baby pictures on this site.  Not once did she ask me about the NG feeding tube or oxygen, etc.  If asked, she will tell you that she was sick when she was a baby, but that the "Riley doctors fixed me".  To her, Riley is the place that Bubby (Nigel) has to go to far more often than she does (he goes every three months for allergy doc & pulmonologist). 

Small nagging concerns hang on too, such as sleep/insomnia and some lingering food aversion issues.  Those are both areas of work in progress.  She is now also on a bladder relaxant to try to correct "spastic bladder" which they believe was causing her kidney reflux (repeat UTIs); this in effort to get her off of the preventative dose of antibiotic to prevent UTIs.  This is fairly new.

Overall and most thankfully, life is very good four years post-dx.  Laken is a bright, sweet, and incredibly mischievious little four year-old.  She definitely keeps us busy.  We can't take our eyes off of her for very long at home because every chance she gets, she is into some form of mischief.  She is currently thrilled to death that she has learned how to snap her fingers and is also currently trying to conquer the hoola-hoop.  She loves to play baseball with her brother and also wants to play in the neighbor's tree fort with her Bubby and the neighbor girls too.  

I don't update here very often, but know, having gone through this ourselves, how very valuable and difficult it can be to find long-term survivors of infant leukemia out "there".  I guess this is, in part, what keeps me coming back. 

I am always mindful too of the far too many children lost to cancer, of one form or another, around us locally and anywhere.  While we are incredibly thankful and wondrous at all that Laken has survived, we are still confused and very sad for those who have not made it but were given better odds of survival.  I can't imagine the pain and sadness of those parents who have lost a child.  At diagnosis, when those odds of survival are thrown at you, no one really knows if it will be their child who will live or die.  To be given the odds is almost self-defeating, in ways, because regardless of how high the cure rate is, no parent knows . . .  Our hearts ache for those parents longing to hold their child who has passed on. 

How could I update without mentioning our wonderul and sweet Nigel too?  He has been through so much too and he is a "survivor" of sorts too.  Truly these siblings go through so much in their own right.  Don't forget to always acknowledge and greet the brother or sister of a child in treatment in much the same manner that you do the child in treatment.  If you get a gift for the child in treatment, get a little something for the siblings too.  For they too are suffering, certainly not in the same manner as the child in treatment, but still . . .

Last but not least, and the second anniversary I mentioned, Jeremy and I are celebrating our 13th wedding anniversary on May 4th!

Thanks for checking on our little Laken & our family.  God bless you all.