Results Are In Again...

     On Wednesday night I received the email from our little Hazelnut's oncologist that we were anxiously waiting for. I was afraid to open it, fearing the worst but hoping for the best. If Hazel's scans were to come back positive, then we would have to begin a journey into the world of Relapsed/Refractory Neuroblastoma, for which there is no known cure.  If Hazel's scans were to come back negative (or clear), then our daughter's body will have been off of treatment and still able to remain cancer free!  Dr. Tran's email was extremely simple and to the point.  All it said was this:  Hazelnut's scans are COMPLETELY NEGATIVE! (The words are exact, but I added the all caps and bold face letters for good measure!)

     To say that we are elated and relieved is a gross understatement, but honestly there are no words adequate enough to express what Aaron and I are feeling.  All I can do is praise our Father in heaven for His faithfulness is continuing to heal our daughter and for giving us each blessed day with her!!  Receiving this gift from Him is all that I could have ever hoped for and has given us a small sense of closure now that her voyage through treatment is now complete (she took her very last Accutane pill on Tuesday!!). 

     With the gift of clear scans has also come another wonderful blessing.  While undergoing her bone marrow biopsy and aspirate procedures yesterday afternoon (which we are still waiting on results, but are hopeful they will also be clear), the doctors also removed the central line from Hazel's chest!!!  We were told that if her scans came back clear they would do this for us because she has never had disease in her bone marrow and were confident that this would continue to be the case and felt comfortable enough to remove them.  The picture above was taken Thursday night, right after flushing her line for the very last time.  Flushing her line is something we have done each and every day since April of 2013 and I truly can't believe we don't have to do it anymore!  The drawers of medical supplies that I have stored in our bedroom can be packed away.  Fear of a life threatening infection developing in her line is now gone.  I no longer need an emergency kit in my purse and diaper bag. If she spends the night at a family member's home, I do not have to worry about her line's safety.  She never has to experience the excruciating pain of weekly dressing changes. And in two weeks, my baby girl can finally go swimming!!!!!!!  My eyes are filling with tears of joy and absolute relief that this tube is no longer a part of my daughter's body, and when I saw it for the first time Hazel said to me, "Do you have happy tears Momma?!"  Since I had to be home with the baby, Aaron took Hazel to this momentous procedure.  He said that when she awoke after the surgery, she looked down and her eyes also filled with tears, a grin spread across her face and she said "I have no more line!  I can splash in the cool!" (this is what she calls a swimming pool).  He said it was one of the most precious things he had ever seen.  I am sure, in some ways, she will experience a sense of loss because this line has been a part of her for a year and a half, but she recognizes how utterly magnificent it is now that it is gone.

     Now I sit here, before all of my children are awake, and I am trying to wrap my mind around the fact that our family is OFFICIALLY done with every last bit of treatment required for neuroblastoma.  As happy as I am, I have found myself experiencing some difficult emotions leading up to this moment.  We have been winding down to this for some weeks now, and life without constant hospital visits, daily injections and medications, fear of germs causing a life threatening infections and much more has actually been a bit unsettling for me.  Strangely, our family has grown accustomed to this crazy lifestyle, and upon this journey's end, we have to readjust.  Readjust to a life of normalcy where I have constantly been feeling like I am forgetting something.  A life where instead of taking care of one child, I am back as a mother of five children.  A life where instead of relying on so many others to help fulfill our daily needs, like cooking dinner, doing laundry and even scooping dog poop, I must fulfill these roles again and begin to delegate and organize our families' needs once again.  I found that I have forgotten how to manage so many of these things over this last year and a half, and there is some anxiety related to this readjustment period, so please keep us in your prayers.  Another thing I have been feeling is a sense of loss now that we are facing the end of treatment.  The friends and family we have gained at Children's Hospital Los Angeles have all made such an impact on our lives and the fact that I will no longer be seeing them on a regular basis is actually very difficult for me.  It's like moving away from a favorite neighborhood, or transferring away from a school or job that you love.  And although I will not miss the treatment and watching my daughter struggle through it, I will miss walking the halls of the hospital and all of the people we have met in them.  Of course we have plans to return for visits and plans to continue to support the oncology program, so thankfully, I do know that these halls are not gone forever.  

     Thank you all so much for your continued to support throughout this trying time for our family, and I ask that you think of us as we navigate through these next years.  I look forward to the future blessings we will be able to share with you, I can't wait for the day we reach 5 years NED and we can finally say Hazel is in remission!

Readjusting

     My apologies, Hazel supporters, for being MIA this last month, however I think it has been for good reasons!  First, Hazel has been feeling so unbelievably well, that we spent much of the last half of June reconnecting as a family and making sure we all spent some quality time together before the new baby was to make his or her arrival.  We have been in constant states of readjusting for the last year-and-a-half, and we know that that phase of our life is not quite over, so we wanted to take the opportunity, before having to readjust once again, to make up for the lost time we have had together as a family.  We've spent many hours playing dress-up, going to the pool, seeing movies at the theater, playing outside, picnicking, and much more.  We celebrated an anniversary, Independence Day, and Aaron's Emmy Nomination (which allowed for a VERY nice evening out!), and completion of Hazel's daily injections!  It has been an absolutely glorious time!  

     Then on July 10th at 6:37pm, we welcomed our fifth child, Zoey Sophia to our family!  God has used her arrival in such a tremendous way and has brought such life to our family and those around us and we are so thankful He blessed us with this surprise!

 

     Now this week, we humbly come before all of you once again and ask for your support and prayers.  Hazel will be having her end of treatment tests.  She will have her scans on Wednesday and her bone marrow biopsy on Friday. Because we have been so busy, these tests have been in the back of my mind and just snuck up on me.  Now that they are here, I am in a bit of a panic.  I trust that our loving God has her in the palm of His hands, and whatever happens, He will continue to be faithful in carrying our family through.  But if I am being completely honest, I am petrified at the possibility of this cancer coming back.  I desperately want my daughter to have clear scans, for now and for the rest of her life and I pray and I pray and I pray that this is His will!  We should know the results sometime this week or next and I will let you all know right away!  

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!!!

     

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!  

CYCLE #4 Done!

     It is absolutely unbelievable to be able to say that Our Little Hazelnut has completed the 4th round of Immunotherapy and we are looking to only ONE MORE TREATMENT!!!  When we were facing that very first round of chemotherapy last April, it somehow seemed impossible for us to believe we would reach this point, let alone even think about it.  And now we are here and the toughest (Lord willing) is behind us!!  The first week of Round #4 went extremely well for Hazel and with very little side effects. I however was suffering from one of the worst head colds that I have had in a very long time and truly relied on the support of the nursing staff that week.  Thankfully by Sunday, I felt much better and was ready to brave the second week of this round.  It was such a blessing that I recovered because it was an immensely difficult week for Hazel.  She suffered through terrible hives accompanied with itchiness, coughing spells that required three separate breathing treatments, fevers, swelling, discomfort and restlessness.  Her creatinine levels began to rise, yet again, signaling possible loss in kidney function.  But your prayers got her through and her body was able to balance back out again and we did not have to stop the infusion because of this issue like we did last time!  Unfortunately, on Thursday (the day before she was supposed to complete the treatment),just as we thought we were in the clear and were going to finish every last drop of the medications, she developed an infection in her line and required us to stop the infusion!  The doctors were even concerned that her line would have to come out.  This would be unfortunate because she is so close to the end of treatment and will have the line surgically removed when she is done, but if it has to come out now, then she has to have this one surgically removed, a new one surgically put in place, only to be surgically removed again at the end of treatment.  So they sent us home on Saturday (not Friday as planned), on an antibiotic that must be infused into her line every 8 hours.  When completed, they will check her line again in the hopes that the infection has been eradicated and her line can stay in place.  So please pray for good results!!

     Once the infusion was stopped, Hazel began to feel a great deal better and even had a couple of wonderful visitors stop by and cheer her up! 

Taylor Swift!

Princess Elsa, from "Frozen"!

     Now we have been home for almost a week and Hazel continues to feel well.  We spent last weekend preparing our new home and getting it cleaned because we are finally moving in this coming weekend!!  So we have been very busy trying to prepare, but we could not be more excited!

Friday in the hospital, she felt so much better!

Emotional Roller Coaster

     I would like to take a moment to express our gratitude for how many of you rejoiced with our family last week when we received the wonderful news that Our Little Hazelnut is currently cancer free.  It is a wondrous thing to behold when we see the army of supporters who are behind us; joining in our sorrows and in our triumphs.  And to have seen all of ours and your prayers being answered in such an incredible way was absolutely miraculous!  Since receiving the news, our family has of course been celebrating and treasuring each moment we have together.  However, it has been a bit of an emotional roller coaster for Aaron and myself.  Many people, myself included, have always seen a "Cancer Free" declaration as a final step into victory.  Although it is certainly a victory for Hazel and our family, it is just the first in what we hope will be a very long line of victories over the next few years.  The reality of childhood cancer does not just disappear with this news, and Hazel still faces two very grueling inpatient treatments and many years of hear-wrenching scans.  In addition, Hazel's particular type of cancer (High-Risk Neuroblastoma) has a relapse rate of anywhere between 35-60%, and currently, there is no known cure for relapsing/refractory Neuroblastoma.  There have been many improvements in treatment in recent years that look very promising, and many children beat this monster for second, third and even seventh times.  So Aaron and I have realized and grappled with these truths, and have only been able to take a shallow, not deep, sigh of relief.  The next five years for Hazel are absolutely critical because this is the window that Neuroblastoma likes to show its face again, which is why she continues on with scans and tests for so long.  But once past that five-year mark, chances of relapse almost diminish and scans discontinue.  Another thing that we may also have to face are late-effects from her treatment.  Common late effects include, but are not limited to, learning issues, vision problems, hearing loss, growth and developmental delays, developmental problems, seizures, headaches and loss of function in certain organs.  So clearly, our battle is not yet over, and we will continue to rely on God's plans and promises and your prayers and support to get us through.  We know, and have seen that our God is a God of Miracles; and I whole-heartedly believe that all of these statistics mean NOTHING to Him!  We need to cling to these truths:

• Deuteronomy 31:8  "The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged."
• Romans 15:13  "May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit."
• Isaiah 40:31  "but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."

     As for now, Hazel and I just checked in at Children's Hospital Los Angeles for Cycle #4 of Immunotherapy.  This will be the same infusion as Cycle #2, where she will receive IL2 for four days, we return home for the weekend and come back Sunday evening to begin the infusion of IL2 & Chimeric combined for five additional days.  As many of you may remember, Hazel had a very difficult time with Cycle #2, so much so, that they even had to turn off the infusion of the IL2.  For this reason, her medical team has decided to run the IL2 at 50% it's normal amount/rate in the hopes that her kidneys do not take such an excruciating hit again.  So please pray that these next two weeks go much better than the last ones and that we may be reminded that He continues to have our little Hazelnut in His loving and healing hands!

Results Are In....

     All of our little Hazelnut's scan an test results are in and....

     We spent our Easter weekend being thankful for the gift of new life through Jesus' ultimate sacrifice on the cross, and now we have experienced that gift in such another remarkable and tangible way.  God has blessed our daughter with a body free of the beast we call Neuroblastoma!  Thank you for your continued prayers and support as we awaited this news!!