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!!  

     

One Year Later...

** NO RESULTS FROM HER TESTS YET!  MAYBE MONDAY OR TUESDAY**     

     Today, April 19th, marks exactly one year since we discovered the tumor growing inside our little Hazelnut's body.  Hazel and I spent this morning last year in a pediatrician's office, desperate for answers.  Hazel had been complaining of pain, had not been eating or drinking for several days, had spiked a relentless fever, had vomited and was falling asleep every few minutes.  God kept moving in me to trust my "Mommy Instincts" and not allow this matter to rest.  I remember, with tear-filled eyes, expressing to the doctor that I thought this may be cancer.  To this day, I don't know why that thought even entered my mind, given our complete lack of experience in the world of cancer; but in my heart of hearts, that was my deepest fear for my little girl who had just turned two years old.

A few weeks before diagnosis

     As Hazel lied there so lethargically, the Dr. observed terrible dehydration, an increased heart rate, and a tender and enlarged abdomen.  She believed it may have been something with the appendix and/or liver and wanted us to go over to the ER right away.  I tried calling Aaron about 15 times to tell him what was going on, but it wasn't until we were admitted that he got my messages and rushed from work to meet us.  I was absolutely terrified.  Once in the ER in Simi Valley, Hazel received IV fluids, and they did blood work and an Ultrasound of her abdomen.  

Laying on the gurney in the ER

She was so tired...

     When the radiologist and physician's assistant discussed the results, they informed us that there was a solid mass, the size of a lime (we found out later that it was in fact much, much bigger than a lime) growing inside her abdomen, but could not tell us anything else about it.  Aaron and I were extremely overwhelmed and begged God for the tumor to be benign.  I remember my body went into shock and everything became such a blur.  Then they called Children's Hospital, reserved our space and prepared us for transport.  We waited on that gurney for about four agonizing hours.  At this point, Hazel's fever was finally down and was much more hydrated, so the ambulance ride was actually great! She was constantly singing songs, waving to Daddy (who was following behind us in the car), and talking to the EMT's, who she referred to as Doctors :)  Leave it to a two-year-old precious little girl to take away the mental torment.  

     Once in the ER at Children's Hospital, it was another waiting game.  We arrived sometime around 7pm, which is when we met several nurses and doctors.  They told us they were going to review the scans to determine if they agree with the results or if they should run their own Ultrasound as well.  More blood was drawn, and more IV fluids were given.  Our family all traveled down to the hospital to be by our side, cry with and support us.  Hours later, the Doctors came in to inform us that they agreed with the results:  There is a mass inside her abdomen and there are two things they are most concerned about; a Wilm's tumor, or a Neuroblastoma.  They said we would be admitted upstairs to the oncology unit for more tests, specifically a CT scan. This was almost 1:00 in the morning.  It took several scans, tests, and a biopsy for it to be confirmed that Hazel was diagnosed with Stage 3, High-Risk Neuroblastoma.   

     At the time, having this all happen over the course of a single day seemed tremendously unfair.  However, in hindsight and with a year of experience under my belt, I realize we were unbelievably blessed by our Father to have it happen in this way.  Most families struggle for weeks or months to find a diagnosis, and by the time the Neuroblastoma is discovered, it has already spread throughout the body and is diagnosed at Stage 4.  I wholeheartedly believe that because God lead me to find answers, we were able to find her cancer soon enough that it did not spread and we could receive a Stage 3 diagnosis.  Had we waited even just a week more, it could have been a very different story.  I now know the kind of aggressive beast that Neuroblastoma is, so I am tremendously thankful we caught it when we did.  

This one verse kept coming up in those first few days, so I wrote it on the white board in Hazel's hospital room, and we were all clinging to it as we awaited the test results that would determine if her cancer had spread to her bone and bone marrow.  

     In the weeks following, we found out more than we would have ever wanted to about the world of childhood cancer and specifically about the monster we have to come to know as Neuroblastoma.  Hazel braved each test, treatment and hospital stay with a courage beyond belief.  We feared for our daughter's life and for the pain and suffering she would have to endure; but she remained a child, adapting to her surroundings, and finding to joy in every day.  We have relied on the support of our family and friends, more than we would have ever imagined would be possible and without them, this year would have made it far too difficult for our little family to survive each day.  I don't think I can ever express fully the depth of our gratitude.  We have lost many friends along this journey, but we have gained many more new friends (other cancer families, the amazing nurses and doctors at CHLA and many supporters) who are now a part of our extended family, and I could never imagine our life without them.  If my calculations are correct, Hazel and I (with a few days of relief for me given by Aaron & other family members) spent 200 out of the last 365 days away from our family.  We have adjusted to a new home in the hospital, and a new reality that we pray and we pray and we pray we do not ever have to face again!  So please continue to keep our little Hazelnut in your prayers and that God will rid her body of this deadly disease.  We hope for a year of change ahead and one where we can have some time to breathe.

These are a few photos from those first 12 days back in April of last year:

CYCLE #3 DONE!

     Thank you from the bottom of my heart for your prayers, thoughts and support this week, because they have moved mountains!!  Cycle #1 (which is the same as Cycle #3) proved extremely difficult for our little Hazelnut; filled with cries of "I want to go home!" and "All done!", swelling, hives, extreme discomfort, disinterest and grumpiness beyond belief.  So mentally, physically and emotionally I prepared for another week of sleepless nights, agonizing days and watching my daughter suffer through something we willingly put her through.  However, God, once again has proven how faithful He is.  Despite some slight discomfort, redness, itchiness and moodiness Hazel seemed to almost breeze through this week!  She ate about one-and-a-half meals each day (instead of not eating or drinking at all, per usual), she smiled and laughed, played with toys and play dough, sang songs, listened to music and we read tons of books.  Additionally, each night after the Chimeric finished, she got out of bed to go for a walk!  Comparatively, this week was an absolute miracle! 

     We arrived home on Friday afternoon and she felt well enough, right from the get-go, to play with her siblings.  Usually it takes about a week for her to recover fully, but it was as if this cycle didn't even happen.  We have all been enjoying being home and the beautiful weather we have been having in Southern California.  

     Now this coming week is an EXTREMELY important week for our little Hazelnut.  It is disease assessment week, which means she will have a full work up of tests and scans to determine the status of her Neuroblastoma.  As many of you may remember, we got so very close to the NED (No Evidence of Disease) result that we have been praying for, but there was a spot on the kidney that was indeterminate.  This week could very well be a very BIG week for our family.  It is quite possible that Hazel is cancer free, and we ask for all of you to be praying for that!!  However, with Neuroblastoma, it is also quite possible that her disease was resistant to Immunotherapy and maybe began to grow back.  So, suffice it to say, we are all quite anxious and trying our very best to put our trust in the Ultimate Healer who has carried us through this whole journey.  I am not sure when we will get results, but for all of our sakes I hope it is quick!