Tough Week

     As expected, our little Hazelnut has had a very tough week.  The combination of these two infusions has caused her so much discomfort, and it is difficult to see her spirits so low.  She has been battling pain, extremely high fevers, hives and itchiness, swelling, breathing problems, constipation, fatigue and a plethora of issues with her labs.  In addition to the continuous pain medication, she is also taking Tylenol (for pain and fevers), Benadryl & Atarax (for the allergic reactions), antibiotics (to prevent infections), albumin (to help with her blood volume) and has needed extra potassium and fluids.  Also, due to her breathing problems, Hazel had to have three separate breathing treatments; but God has answered my prayers on this issue and she has not had any breathing issues yesterday or today!  In addition, her fevers have come down!

     Today also came with another hiccup.  Due to Hazel retaining fluid and not being able to excrete enough urine, she has gained some weight and her kidneys are taking a hit.  Her kidneys were already damaged during her ICU stay, and my assumption is that they have not yet returned to good function, and because of that, her creatinine levels have skyrocketed.  They are TEN TIMES the amount they are allowed to be while on this Immunotherapy clinical trial.  Based on the information we have, it is generally the IL-2 infusion that will cause this side-effect, so it was stopped a few hours ago.  Unfortunately, it is ideal to receive every last drop of this treatment for efficacy, so we are all a bit disappointed.  However, she only had about 12-15 hours to go on the infusion, so she already received the majority.  The doctors are not sure how this will effect her long term success and are going to take the next few days or weeks to figure out a game plan for what to do when she has to receive IL-2 again (which is during Cycle #4).  She is still safely able to continue the Chimeric infusion, which will definitely work in her favor, and that comes down tonight, so we are almost done!  Please pray, however, that she can urinate enough tonight and tomorrow morning so her creatinine and weight both come down.  If they do not, she will most likely have to remain in the hospital until it resolves.
     A few days ago, I was reading a book that discussed the bible verse 2 Corinthians 12:9 " My grace is sufficient for you".  The author, Charles H. Spurgeon (language revised and updated by Alistair Begg) wrote something that really spoke to my heart.  He says "If none of God's saints were poor and tired, we should not know half so well the consolations of divine grace...God's grace is illustrated and magnified in the trials of believers. They bear up under every discouragement, believing all things work together for their good, and that out of apparent evils a real blessing shall ultimately spring--that their God will either work a deliverance for them speedily or most assuredly support them in their trouble...The masterworks of God are those who stand in the midst of difficulties steadfast, unmovable...If, then, yours is a much tried path, rejoice in it, because you will be better able to display the all-sufficient grace of God.  As for His failing you, never dream of it...The god who has been sufficient until now should be trusted to the end"!

Prayers Please!

     Our little Hazelnut and I had a fantastic weekend at home with our family.  She spent the last few days of last week feeling pretty crummy, and spiked a high fever, so we were worried we weren't going to be able to be discharged; but once the IL-2 was finished infusing, she felt so much better and we went home by Friday afternoon!  It is now 10:30 p.m. on Sunday night, and we just checked it for the week.  This is the toughest week that she will face during immunotherapy, so we covet your prayers and support!!  
     In addition, I forgot to include another charity event coming up this month in the last blog post, so I would like to tell you about it now.  On March 22nd, Authors S.C. Ellington and Dani Hart will be hosting a Charity Book Signing Event.  For those who are local, we would love to see you there!  Here is the flier with all the information and a link to where you can purchase tickets!

Family Changes

     Our little Hazelnut is doing very well this week!  Besides a loss of appetite and some fatigue, she is otherwise feeling much like herself.  She has been up playing, taking walks through the halls and spending much needed time in the playroom.  We should finish up by early Friday afternoon and be discharged soon thereafter.  Then we come back Sunday night for the grueling week of the IL-2 and Ch 14.18 combination.  All of this being said, I would like to take the opportunity now to share with all of you some of the changes our family has been experiencing outside of Hazel's treatment.
     In November of last year, as many of you can remember, Hazel was in the ICU fighting for her life.  It took everything we had to stay by her bedside and put our faith in God to pull her through those harrowing days.  During the second week of her stay, Aaron and I received the surprise of a lifetime and learned that we would be expecting another baby.  Upon discovering this news, we were utterly shocked, overwhelmed and even broken.  I had spent the entire month of October in the hospital with Hazel, only returning home for one single weekend.  Aaron and I made responsible birth control choices and I had been so unbelievably stressed that we never even imagined this could happen.  We both made the decision to keep the news to ourselves until Hazel was in a more stable place and until the two of us could be excited to share the news.  Now, I am 21 weeks along, Hazel is doing wonderfully well, our family and close friends have shared in our celebration, we have discovered that I will deliver in July, just weeks after Hazel's very last inpatient stay; so we feel elated to finally share this news with all of you!  We have chosen to keep the gender a surprise and it has truly given us something exciting a wonderful to look forward to this summer.

     Due to our unexpected family growth (5 children, can you believe it?!), Aaron and I began praying about a possible move to a bigger home.  We didn't necessarily believe it would even be possible, but we wanted to put the option completely in God's hands, and if he provided a way for it to happen, then it would be in His will.  Well, in His faithfulness, He not only provided a possibility for us, but He gave us a new home to move into that will be absolutely perfect for our family.  We just sold our current home last week, and will be closing escrow sometime at the end of March or beginning of April.  He showered these transactions with His guidance, and most importantly with His provisions.  As wonderful as this has been to receive such a blessing, it has presented us with quite an overwhelming schedule (on top of the already busy one that we have).  So we put our complete trust in Him to provide us with the support we need to get through this move!

     As I have been praying about, and adjusting to these two new changes God has brought to our lives, I have felt something in my heart that I hope is what God is trying to show us.  Hazel will be finished with treatment, and will hopefully be cancer free, we are having a new baby and we are moving to a new home.  All of these things seem to point to a new beginning and a fresh start to our family.  I feel as if God is showing us he has a bright and beautiful new chapter in store for us, and I pray that it is so!  

Next Cycle of Immunotherapy and Some Announcements!

     These past couple of weeks have been wonderful, but overwhelmingly busy for our little family.  We have had quite a lot of things happening, aside from Hazel's treatment and appointments that have stretched us very thin.  At times it has taken all that I have just to think straight, so writing was practically impossible.  That being said, we have also experienced so much joy at the many blessings our God has showered upon us!  The most prevalent being that Hazel has felt extremely well and we have all been able to live as a normal family!  One of the highlights of the last couple of weeks was being able to go out to the move theaters, TOGETHER!!

     Today, we have just checked in to being Cycle #2 of Immunotherapy.  It is a two week stay, with a break to go home over the weekend.  The first week consists of a four day infusion of IL-2, which is not the solution that caused so many difficult side-effects during the last cycle.  Most kids sail through it, maybe feeling a bit tired.  So our prayer is that it will be the same for our little Hazelnut.  So far, she has been hooked up to the infusion for three-and-a-half hours and seems to be doing well, so my hopes are high.  Next week is a double infusion of IL-2 and Ch 14.18 (the solution from Cycle #1), and we expect to face a much rougher time.  My prayer is that since we have been through the Ch 14.18 infusion once, and we know what seems to best help her, that we will be able to stay on top of the ball and keep her as comfortable as possible.  We will keep you updated over these next few weeks and will let you know where we need your prayers the most.

     Now I would like to share some of the amazing things that have been happening over the last several weeks and some upcoming events:

On March 15, our family and friends will be participating in the 11th Annual LAFD/LAPD St. Baldrick's Event, at Fire Station 89 in North Hollywood, California.  The many participants of this wonderful event will be shaving their heads to raise much needed funds for childhood cancer research.  All money raised goes to The St. Baldrick's Foundation, a volunteer based charity that funds more in childhood cancer research grants than any organization except the U.S. Government.  We have created a TEAM HAZEL for this event, and our goal is to help raise at least $1000.  If you feel compelled to donate to our cause please visit our page at http://www.stbaldricks.org/teams/mypage/91111/2014 and donate now!

From The Make-A-Wish Tri-Counties Facebook page: "Hazel will be the official Wish Kid Ambassador for our local chapter of Make-A-Wish for their 2014 Wishes in Flight campaign, with a goal of one million donated miles!  She will be the face of the local campaign and will help raise awareness about the great need for donated airline miles. Many wishes like Hazel’s come true with help from frequent fliers. Their donations of air miles are essential to getting wish kids to their destinations. The Wishes in FlightSM miles donation program is easy – and the miles never expire once donated. 63 percent of the wishes granted locally by Make-A-Wish Tri-Counties, who serves Ventura, Santa Barbara and San Luis Obispo counties, include air travel for families to reach their wish destinations.  Locally 8 million donated airline miles are needed to provide wish travel for wish kids and their families each year. Less than 2 million are donated each year, making airline tickets the most avoidable but significant expense for the local chapter. Currently the local Make-A-Wish chapter has depleted their donated airline miles bank, and is paying rack rate for all tickets purchased."


     Please consider making a donation in Hazel's honor to help make some dreams come true!  To donate Delta, US Airways, Continental, United or JetBlue frequent flyer miles to Make-A-Wish Tri-Counties, go to http://tri-counties.wish.org/ways-to-help/giving/airline-miles or call 805-676-9474 x4. 

The wonderful Talbert Family Foundation, which has supported our family so much over this last year has been chosen for the second year in a row by Jersey Mikes' Month of Giving Campaign.  This means that for the entire month of March, all Los Angeles area Jersey Mikes Subs Restaurants will donate 100%(!!!) of its proceeds to this organization.  In turn, 100% goes directly to the families, like ours, to help them through the many difficulties that comes with a diagnosis like Hazel's.  If you live in the area, please take the time to show your support and enjoy a sub!

Last, but certainly not least, this past weekend, we had an amazing opportunity to participate in something that we hope will impact the world of childhood cancer awareness in a BIG, BIG way.  We partnered with Paramount Pictures, The Bumpus Family (Lilly Bumpus is a young girl who has beaten Ewing's Sarcoma at just over a year old.  You can find her on Facebook), and several other local cancer kiddos to film a documentary!  It's main focus is the abysmal 3.8% of cancer funding that our kids receive. Our hope and prayer is that it can be a wide release and garner the attention that this subject deserves in the hopes of moving the world to action!  We will keep you updated as to when it will be finished and when and where it will be released!

Cycle One DONE!

   Our little Hazelnut was able to be discharged on Valentine's Day and has officially and successfully completed Cycle #1 of Immunotherapy!!  It feels utterly extraordinary to be able to say that she is one-six finished with her very last phase of treatment, but after last week, I know it will be a difficult journey.  Overall, it was a very challenging experience (but I kept telling myself it was not nearly as difficult as the ICU!), with Hazel never feeling comfortable, losing her appetite, being overcome with exhaustion (from the discomfort and the around the clock Benadryl), and fighting pain, fevers and allergic reactions.     The first day she started the Ch 14.18, she was experiencing quite a bit of pain.  It came upon her almost immediately and she was squirming, crying out and kept saying "I want to go home!". The nurses and doctors had to raise the pain medication drip several different times until we found the right dose, but she never really recovered or got comfortable and no amount of pain meds would have been able to help her.  In addition, her whole body turned red and hot.  However, she never broke our in hives or had any swelling, so the team was unsure if it was an allergic reaction or not.  Thankfully, she made it through the day (and each subsequent day) without ever having to slow or stop the infusion and was able to receive the whole dose, which is the most important factor of this treatment.  In the evening, the pump was turned off, and she was weaned off the pain medication slowly.  She immediately felt better once the infusion was done, but never got to 100%.  In fact, much different than I had hoped, we had many a sleepless nights during this hospital stay.  The second, third and fourth days, her pain was managed so much better!  She still felt very unwell and uncomfortable, but was no longer crying out.  She hardly ever got out of bed, if at all, and would not eat anything.  Then each night, just as the infusion was finishing, Hazel began breaking out in hives and would have swelling in her face and lips.  One night she began coughing so much that she required a breathing treatment.  It was certainly a frightening time, but I had so much confidence in the fact that the Lord has brought us through much worse!  And the medical team that administers this treatment is extremely experienced and knew exactly what to do in each situation we faced.  Now that we have one cycle under our belts, we now know what to expect and what treatments work best to manage Hazel's side effects, so hopefully it will not be nearly as challenging during cycles #3 & #5.  Cycles #2 (which begins March 3rd) & #4 add a second infusion to the mix, so we will have to face some more trial and error.  Here are a few photos from the week:

     Since coming home, Hazel has felt so much better!  We walked through the door to our home and she just hit the ground running.  The doctors weren't kidding when they said once the infusion is done, it's done! The only thing she has been struggling with has been her appetite.  It took up until today for it to really start coming back.  She also began her course of Accutane, which requires her to take three pills in the morning and three pills in the evening.  I have been feeling very anxious about this step, trying to imagine how we were going to get a newly three year old to swallow six pills a day; but boy she takes these things like a champ!  She has just blown us away with her resilience and ability to adapt to new situations.  It has been so much harder for Aaron and I to constantly readjust to new normals every few weeks, but she and her siblings take these moments in their stride.  God has been so faithful to lift these children up and I will be forever grateful.  

Immunotherapy/Ch 14.18 Treatment (LONG POST AHEAD)

     It is 11:00pm and I am sitting in the all too familiar hospital window after checking in for the beginning of the first cycle of Immunotherapy.  Hazel begins her first infusion tomorrow and we ask you to lift her up in prayer as we face a new and unknown phase of treatment.  The feelings I have remind me of those that I faced before Hazel started chemo.  Even though we have an understanding of what this phase will entail, and an army of Neuroblastoma fighters who have forged a path ahead of us for us to look to; we have absolutely no idea how this will affect our little Hazelnut individually and this makes me quite a bit uneasy.  The one major difference between now and then, is that I have almost an entire year to look back on and see how my mighty God carried us through the most tough and grueling times of our life.  This allows me to have much more strength and confidence than I could have mustered last April.  2 Timothy 1:7 says "For God gave us a spirit, not of fear, but of power and love and self control", and I trust in His promise in Romans 15:13 "May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit, you may abound in hope".
     
     Now here is some information about Immunotherapy/Ch 14.18 Treatment (taken from Children's Neuroblastoma Cancer Foundation's website):

• Neuroblastoma can elude the immune system by using a number of tactics. Specifically, it is able to suppress the immune system’s capacity to identify and destroy cancer cells. If the patient’s body is to play a role in killing the neuroblastoma cells, the immune system needs some help in its ability to locate the cancerous cells. Helping the immune system find the neuroblastoma cells is the purpose of the ch14.18 therapy. 
• ch14.18 is a type of “monoclonal antibody” (mAb). The ch14.18 treatment is called an “anti-GD2” treatment because the ch14.18 antibody targets a substance on the surface of neuroblastoma cells called GD2. ch14.18 is a protein which has been designed to bind to the GD2. Once the ch14.18 binds to the GD2, it sends a signal to the body that tells the immune system a foreign substance has been found which needs to be killed. This then stimulates a response from the body’s own immune system to kill the neuroblastoma cell, 1 which is why the ch14.18 treatment is referred to as “immunotherapy.” 
• The “ch” in ch14.18 refers to the term “chimeric” and means that the antibody has been created from two different sources – in the case of ch14.18, mouse and human cells (25% mouse, 75% human). 
• ch14.18 is administered over 5 courses, approximately once per month over five months. It is given in conjunction with either GM-CSF or Interleuken-2 (IL-2), agents known as “cytokines” that work to stimulate the immune system once the ch14.18 attaches to any neuroblastoma cells. Each round of immunotherapy is followed by 2 weeks of Accutane treatment at home.
• GM-CSF is a daily shot that Hazel will receive with Cycles 1, 3 & 5.  These shots could make her experience things like: bone pain, feeling like she has the flu, tiredness and weakness and stomach upset.
•  IL-2 is a daily infusion she will receive for four days prior to and in conjunction with the Ch 14.18 infusions during Cycles 2 & 4.   
• Isotretinoin, which is usually referred to as “Accutane”, is derived from vitamin A. It encourages immature neuroblastoma cells to stop dividing and proliferating, and ultimately die.  Hazel will receive a two week course of Accutane following each cycle, and will receive one more two week course to serve at Cycle 6 of her Immunotherapy protocol.

     The most concerning part for us are the many side effects involved (so please pray specifically for these!!).  Unlike chemo, Hazel will finish each infusion and is expected to bounce back quickly and not have the long lasting side effects that would send us back to the hospital a week later (i.e. fever, infections, low blood counts, etc.).  That being said, DURING the infusions, she could experience quite a lot of misery.  Some of the likely side effects include:

• Pain (each child is started on a morphine drip before the infusion even starts, in order to try and stay ahead of the pain)
• Allergic Reactions
• Fever
• Constipation
• Nausea
• Blood Pressure Changes
• Fluid Retention
• High Heart Rate
• Flu like symptoms
• Fatigue
• Drop in platelet counts
• Possible affects to kidneys and liver (this worries me most due to the damage that has been done to these before during transplant)

     Here is what our inpatient schedule will look like (barring any complications) over the next several months:

• Cycle #1  2/9-2/14 or 15
• Cycle #2  3/2-3/7  Home for Saturday then back in 3/9-3/14 or 15
• Cycle #3  4/6-4/11 or 12
• Cycle #4  4/28-5/2 Home for Saturday then back in 5/4-5/9 or 10
• Cycle #5  6/1-6/6 or 7  **OUR VERY LAST INPATIENT STAY!!**
• Cycle #6  Accutane taken at home 7/7-7/20 **HOPEFULLY THE VERY LAST DAY OF TREATMENT!!

     If you have stuck with me this long, first let me say thank you!  Secondly, as you can see, these next several months will continue to be a challenge for our family and we will need a lot of prayers and support.  But it is also very exciting for us to say we are starting the very last phase of treatment and finally be able to see the light at the end of what has been a very dark tunnel.  We could not have gotten to this place without our God, our family and friends and all of you!!!

Scan Results

     Today was the day we received the results of all of Hazel's scans, and I have to say that our God is good!  We did not receive the coveted NED results we all were praying for, but we got as close to it as I think we possibly could have.  Our little Hazelnut's body is completely clear of cancer (praise God!!), but there was a small spot in her kidney that lit up on her MIBG scan.  Dr. Tran informed us that this small spot could either be residual disease, or actually just normal kidney uptake that is lighting up; and it is near IMPOSSIBLE to determine which it is.  So we do not have a definitive answer as to whether or not our daughter is cancer free, which is a bit frustrating.  However, the doctor's opinion is that it is much more likely that the small spot is normal kidney uptake and not cancer, and he is optimistic for her and very pleased with these results!  If it is residual disease, the spot is much smaller than any of her other scans and would more than likely be taken care of during Immunotherapy.  In addition, many of his other patients (which are also many of our good friends/family we have grown to know and love on this Neuroblastoma journey), have gone into Immunotherapy with quite a bit more disease than this potential spot on Hazel's kidney.  Furthermore, neuroblastoma is an extremely aggressive form of childhood cancer, that likes to progress when off chemotherapy and other forms of treatment, so that fact that Hazel showed absolutely no signs of progression is an extremely wonderful piece of news to hold on to! So overall, we are very encouraged and know that God is hearing the cries of our hearts.  I would like to spend some time to fill you all in on what is coming next, but we ended up waiting for two and a half hours for this appointment today, after having physical therapy in the morning; so we are  absolutely exhausted!  Please keep praying and I will post again very soon!