Friday, September 27, 2013

An Amazing Time and Some Sobering News

     This last week and a half our family has been sweetly savoring everything.  I have never appreciated the small moments you get as a parent with young children and the quality time with my husband as much as I do now.  And Hazel has been feeling so well that it has been so wonderful to just enjoy our time as a quasi normal family!  One of the amazing moments we were able to share was taking a trip to Disneyland!  This was our little Hazelnut's first time and she just LOVED it!  All of the children seemed to have a magical weekend.  Here are a few pictures, and then after I will discuss the sobering news we also received:

     The time at home has been peppered with so many appointments at the hospital to prepare for Hazel's stem cell transplant, the most important one being our meeting with Dr. Tran our oncologist where we discussed all of the results from Hazel's tests and the procedures involved with the transplant.  We first went over the results from the MIBG and CT scans.  As we already were aware, there is still a small portion of her original tumor that could not be removed during surgery, and the idea was that it would already be dead tissue going into transplant after receiving that last round of Chemo in Phase I.  However, the MIBG scan indicated that the small portion left in her little body is, in fact, live cancer cells.  Needless to say, we are disappointed in this news, but the doctor assured us that although this is not favorable, about 50% of Neuroblastoma cases head into transplant with live cancer cells and it is not something they haven't dealt with before.  This news makes all of her upcoming treatment all the more critical and now we may have to consider even more treatment (i.e: MIBG therapy).  We also discussed the possibility of a second surgery, and should be hearing back from the doctor on that in the next few days.  I am unsure about what this news means for Hazel's chances because we did not discuss that, but I can only assume that it just makes the next year more difficult and arduous for all of us.  
     We then discussed the reality of what we are about to go through with the stem cell transplant, and this entailed quite a lot of information; so I will write another post detailing all of that for you.  In the meantime, please pray that God will use the rest of Hazel's treatment to eradicate ALL of the remaining tumor, and that when all is said and done, we do not have to face the reality of relapse and can be finished with cancer!!

Wednesday, September 18, 2013

A Complete Work-Up

    These last days at home have been absolutely amazing and our little Hazelnut is doing so much better! Thank you so much for thinking of us and continuing to keep us in your prayers, because we feel them! I haven't updated since arriving home because we have been really enjoying all of this family time we finally have together and have been taking advantage of every moment before heading into the stem cell transplant admission next month. Also, we have had tons of appointments at the hospital to do a complete work-up (scans, kidney test, ECHO, dental exam, etc...). This is all done to determine where Hazel's disease is exactly at so that the doctors can come to a consensus about all future treatment, and most specifically what kind of high dose Chemo and how much of it she will receive during the transplant.  This will (prayerfully) be the very last infusion of Chemo our little Hazelnut will EVER receive, and I am so looking forward to that moment that it is done. However, this particular chemo's job is to wipe out her entire immune system and leave her with no defenses so that when they give back her stem cells we collected months ago, she can regrow a brand new immune system that will be stronger and more resistant to Neuroblastoma. We meet with get doctors on the 24th to discuss all of her test results and go over every single detail of the stem cell transplant process.  I'm definitely nervous about this meeting but I am also ready to have as much information as possible so I can be prepared for next month.
     This next week will continue to be full of appointments and family time. In fact at this very moment Hazel is getting her MIBG scan and is doing great! As soon as we know anything, I will let you all know, but if it takes me a few days, just know it is because Hazel and I are having a great time being with our family!

Tuesday, September 10, 2013

A Brighter Day!

     Our little Hazelnut is eating!  After almost 3 weeks of very little interest in food, my daughter is eating!  She is also laughing, and dancing, and playing!  Today is a brighter day!  Thank you so much for your prayers.  God has used them to do miraculous things today! She is not longer on morphine, and her doses of Tylenol have been switched to an "as needed" order.  She also got her first real bath since her surgery because the surgical glue finally came off and that really perked her up.  We had a dance party last night and she has impressed everyone who has come to see her today.  My baby girl is STRONG and my God is MIGHTY!!

Here's Hazel with a sign made by her good friend Kaitlin, who we met here on the 4th floor.  Check out Kaitlin's story at Kaitlin's Village:

Sunday, September 8, 2013

A Difficult Journey

    These last few days have been so rough for our little Hazelnut and we have had to rely on God's strength more than ever. I can do all things through Christ who strengthens me (Philippians  4:13)  Although the fever is gone and her nausea seems to be doing better, mucositis (mouth sores) have definitely set in.  Eating, drinking, and swallowing is all pretty painful for her; and we are quite sure that they have spread down her throat into her digestive system (something mucositis does often) because she is complaining of a lot of pain in her tummy.  She has been whimpering throughout the nights, so yesterday we decided to begin her on a low dose of morphine, hoping she (and me too) can get some uninterrupted sleep.  The morphine definitely helps her to feel less pain, but she is still very uncomfortable.  Her platelets dropped and she received a transfusion and her white count is still so low that there is no discharge day in sight.  But when they start to come up, they jump quickly, so I pray that this happens soon!
     Aaron spent the weekend here at the hospital while I went home for a couple of days to see the other children.  This reprieve was absolutely necessary for me and I cherished every moment, while Aaron cherished the moments, although extremely challenging, of being able to comfort Hazel (something he doesn't get to do as much considering he still has to work full time for our family).  However, being home made me aware of, once again, how much this journey has torn our family dynamic apart.  Hazel has spent 66 of the last 142 days here at the hospital. 65 days!!  Aaron has said how much he wishes he could be here to support Hazel and it's been so hard on him to not be able to do so. I am extremely thankful for each day we get at home, and never would have thought I would long for the commotion of four young children together. The dynamic of those days have also changed, however and are spent ensuring Hazel stays as germ free as possible and trying to catch up on all of the daily things we normally deal with as a family of six that have been neglected. And I grieve for the month of October knowing that for a potential 4-6 weeks straight our family will not be in tact.
     I apologize if this post is not as optimistic or hopeful as most of my others, but I think it's indicative of how Aaron and I have been feeling this week. We have had easier days and have felt strengthened, but right now, we are tired from this journey and have reached a point where it feels so difficult to keep putting one foot in front of the other. For this reason it is so heartening to know that I don't have to rely on my own strength.  The Lord my God, Creator of the universe, & King of Kings is on my side, and any strength you see from me has come from Him.  If you will allow me, I want to share something deeply personal with you.  Throughout my life, I have struggled with a hereditary form of depression, and it wasn't until God moved in my life that I finally felt free from it.  However, it still continues to be something that is a part of me and I have to ask God to help me make conscious choices to not allow it to invade my life, and He has been so faithful.  I have had many wonderful years that have only been peppered with this beast.  Because of this knowledge I have about myself, I was very worried when Hazel was diagnosed.   I was worried that depression would rear its ugly head, paralyzing me through this journey.  But this has not happened!  When my mind is predisposed to respond in a certain way, a way that would have me not even wanting to get out of bed in the morning; God has supernaturally kept this struggle away from me! Even on weeks like these, where many tears have been shed, He continues to carry me through each day.  I love what it says in Psalm 27:13-14 "I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and let your heart take courage; yes wait for the Lord". And this next verse speaks directly to my heart and describes what I feel from God with such precision:  Isaiah 40:28-31 "Do you not know? Have you not heard? The everlasting God, the Lord, the Creator of the ends of the earth does not become weary or tired. His understanding is inscrutable. He gives strength to the weary, and to Him who lacks might, He increases power. Though youths grow weary and tired, and vigorous young men stumble badly, yet those who wait for the Lord will gain new strength; they will mount up with wings like eagles. They will run and not get tired, they will walk and not become weary".
     Please pray for Hazel as she struggles through these days of pain and please pray for the emotional well being of our entire family!

Thursday, September 5, 2013

All Too Familiar

     Hazel spiked a fever last night and  was so tired all yesterday so she needed to head to the hospital. We arrived at the ER at Children's Hospital at 11:00pm and didn't get up into our room until 5:00 this morning. Needless to say, we are both pretty tired. Her blood counts were very low so she already received a blood transfusion. She vomited once and overall feels really run down and crummy. We are waiting on results to determine if she has an infection and also if she has any viruses that could spread. Until then, we can't leave the room. She's still not eating much and is struggling to drink, so I am so thankful that we are here getting her hydrated! Although she is pretty miserable, she still manages to be in fairly good spirits. Please pray for her to recover quickly and not get any more side effects like mouth sores! I'm so glad that this is almost over!

Tuesday, September 3, 2013

Chemo is Done!

     I am so thankful that all of the rounds of Chemotherapy are done for our little Hazelnut, because it has been a rough couple of days....We did get to go home on Saturday morning, and I am so thankful; but she is having such a hard time eating and drinking, has vomited a couple of times and all around just feels pretty crummy.  Her disposition has been so much better since returning home though, so I know that being here is making her feel better.  In addition, upon coming home, 3 family members were coming down with colds!  We had to send my youngest (Jonah who is 10 months), to my parents' home to keep the germs away, and he is currently still there and has an ear infection.  I haven't seen him very much since Hazel's surgery and I miss him terribly!  But I am beyond grateful that we have the support that we do, who is willing to take care of a sick child in order to keep our Hazel safe (THANKS MOM & DAD!). Elizabeth, our 4 year old, was put in quarantine in her room for a few days' but I heard no complaining because she got to watch all of her favorite movies, play with her Leapster Explorer and look at her favorite books! Aaron kept his distance the first couple of days, but with the help of Zicam and Dayquil, he kicked that cold right out the door!
     While at the hospital, I made sure to document those last few moments of Chemotherapy.  I took pictures of her giant apparatus of an IV pole, and shot of her very last mL of drugs. 

     We also had a sign posted on her door during her last infusion, which was signed by many members of the staff and several friends on the floor.  We will cherish this forever.

      As the last mL flowed through my daughter's veins at 10:00 at night, several nurses came into the room and joined us in a countdown.  The second that IV machine began beeping, we all cheered as Hazel exclaimed, "My chemo is all done!".  The nurse unhooked her from her pole and she jumped down from the bed and yelled "I'm free!" and asked if we could go on a walk.  It was such a beautiful moment!  We then went around to every nurses station, on both wings of the 4th floor so she could tell everyone her amazing news!  I relished in all the celebrations happening around my daughter and feel so grateful for such a wonderful staff at CHLA.  On our way back to our room, Hazel was greeted with a huge surprise, which was completely fitting for the moment: Princess Ariel had come for a late night visit!

     When Hazel saw her, she didn't even know what to do with herself.  She took her everywhere, and showed her everything; down to the carton of milk she refused to drink during dinner!  They walked, they sang, they danced, they curtseyed, and chatted the night away.  Ariel even read Hazel a bedtime story, but when it was time for her to leave, Hazel had a meltdown.  I'm sure it was hard for Princess Ariel, but she stayed through the meltdown to comfort her when she was ready.  This just spoke volumes to me. 

      Now that we are home, we will probably be here for a few more days until Hazel will most likely spike a fever that will send us back to the hospital for neutropenia.  After that, she will be going through a full work up to make sure her body is prepared for her upcoming Stem Cell Transplant, which is tentatively scheduled to begin October 1st.  This workup will include several scans (the MIBG that I posted about before is one of them and will be on September 18th), blood checks, dental exams (to insure she does not have any cavities or any other ways an infection can be introduced) and much more.  So this will be a busy month for us.  I am anxious about this phase ahead of us, but as I have been reflecting on the journey we have had over these last 4 1/2 months, I can see my mighty God's fingerprints all over it.  The reality of these promises have been amazing to behold:

  • Psalm 55:22 "Cast your burden on the Lord, and He will sustain you"
  • Isaiah 41:10 "Fear not, for I am with you; be not dismays, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand"
     And even though I am anxious about the days to come, I can remember His faithfulness over these last months and remind myself that "Jesus Christ is the same yesterday and today and forever" Hebrews 13:8.