Monday, June 16, 2014

END OF TREATMENT!!

     Our little Hazelnut is DONE WITH INPATIENT TREATMENT!  I CAN'T BELIEVE OUR BABY GIRL IS FINISHED!  WOOOOOO HOOOOO!!!!  Not only is it done, but it really went as well as we could have expected!  Despite some hives and feeling a bit under the weather, she felt much more comfortable than previous visits.  Much of our week was spent saying goodbyes and heartfelt "thank-you's" to the plethora of nursing and medical staff that have grown to become extended members of our family.  It was so bittersweet for me to know that we were saying goodbye for such a good reason, but my heart was mourning for the time we will no longer be spending with such wonderful people.  Not to say that we won't be seeing our CHLA family again, because we intend to stay quite involved and visit a lot!  

     On Friday, Hazel's very last day being an inpatient (Lord willing), we had a small party to commemorate her journey.  We laid out her beads of courage, each representing something she has done, been through or accomplished and we were all taken aback by the visual.  We felt pride in our courageous daughter, but more importantly we felt overwhelming thankfulness that our Good and Faithful God held her hand through each and every one of those moments and brought her out on the other side. Each bead truly speaks volumes and so clearly reminds me what He says in Deuteronomy 3:16 "Be strong and courageous. Do not fear or be in dread of them, for it is the Lord your God who goes with you. He will not leave you or forsake you.”  And being able to see what He has brought us through has given us the confidence to fully rely on Him in any and other times of need.
  




Walking to the 4th floor elevators for the last time!

     Upon returning home, we spent the weekend relaxing and celebrating this milestone with our family.  We wanted to make sure that everyone who has taken this journey with us was also recognized because it was arduous on them as well.  Our other children deserved as much recognition as Hazel, for they suffered in different and many times unseen ways.  Our family members who all sacrificed so much to come along side us and take care of us in every and any way that they could deserve more thanks than I can give in an entire lifetime. Here are a few pictures from our celebratory dinner:




     Now we have spent the last two weeks continuing to settle into our new home, preparing for the upcoming arrival of Baby #5 and enjoying the first days of summer vacation all together!  And each day, Hazel seems to be feeling better and better, and her sparkly personality shines a bit brighter.  She is still finishing her rounds of Accutane that cause some dry skin and mood swings, but this seems like such a minuscule problem for us to face, that it has hardly phased us at all.  Suffice it to say, though, I will be a very happy Mommy when she takes that last pill on July 20th (but who's counting, right?!).  Once she finishes with that last course of pills, she will have her end of treatment tests and scans.  As soon as I get the scheduled dates, I will let you all know ASAP so we can all be praying that our little Hazelnut is still cancer free!  
Hazel wanted to wear this T-shirt and the same headband that can be seen in the photo, which was actually taken on the day we had to shave her hair.  My, look how much has changed!  PRAISE THE LORD!!!

     

Monday, June 2, 2014

A Slice of Normalcy

     Last I posted, we were administering antibiotics to treat an infection in Our Little Hazelnut's line (central venous catheter placed in her chest), in the hopes that it would not have to be removed.  I am happy to report that they did their job and she was able to keep her her line in place!  If all continues to go well, and her end of treatment scans she will be receiving in July(!) come back clear, she will have it permanently removed during that same month.  Hazel keeps saying, "When my line comes out, I am going swimming in the cool!"  Not only is it so endearing to hear her call a swimming pool a "cool", but it just melts my heart to hear how excited she is about doing something she has missed out on for the last year.  She hasn't even been able to take a proper bath, so it will be a glorious day when we can finally allow her to be submerged in water! 
A bath in the sink because mommy's belly won't let her get down to the tub!
     Other than the antibiotics, Hazel has had a pretty uneventful couple of weeks in regards to her health; which for me is absolutely marvelous.  She has been feeling very well, has only had to go to a couple of appointments and has just been able to be a normal kid.  Something Aaron and I have been talking about lately is that is so amazing to see Hazel be just one of our kids, rather than having our whole family life revolve around her diagnosis and care.  Because we are not all focused on what Hazel needs at every moment of every day, it has made our children's relationships flourish.  Instead of catching vomit, or keeping a close eye on fevers, I have been spending my days watching them  and joining them in play, changing diapers, making meals, scheduling naps, monitoring arguments and all the other normal things that we mothers take for granted.  If you would have told me a year ago that I would be thankful to hear my kids argue, I would have thought you crazy.  But now the sounds of arguing means my children are all together under one roof, and I am actually there to help them navigate.  I have missed this more than I ever thought possible.
Making cookies!
Enjoying toast with Nutella
On an impromptu trip to Monterey, CA
     In other news, our family is finally settled into our new home!  We still have a few things left to unpack (isn't that always the case though?), but the major areas are done and we have been enjoying the new space quite immensely.  To have the weight of moving finally lifted off our shoulders is such a relief!  Also, I am now 34 weeks (about 7 1/2 months) along in my pregnancy.  Despite being utterly exhausted, I have been feeling well and things have gone very smoothly.  I thank the Lord each day for this fact knowing how difficult pregnancy can be for many women because had I have been struggling, everything else we have been going through would have become absolutely unbearable.
     Now, Hazel and I checked in last night for the week for her VERY LAST ROUND OF  IMMUNOTHERAPY!!!!  Please keep us in your prayers this week that her side effects may be minimal, it will go smoothly and we can spend Friday celebrating her last day ever as an inpatient!