Amazing God

*DAY +73 POST TRANSPLANT & 80 STRAIGHT DAYS IN THE HOSPITAL*

     The last few days have been nothing short of miraculous and remarkable.  Our little Hazel is finally back! She is talking and signing like her old self and has made such extreme progress in all her therapies. She has even been walking across the room with her walker! God has worked such a miracle and has given us the best Christmas present of all: WE ARE GOING HOME BY NEXT FRIDAY AND POSSIBLY EVEN ON CHRISTMAS EVE!!!!!!!!!!!  We never dared to hope for this after hearing Hazel's initial assessment of needing to stay 4-6 weeks, but God knows the deepest desires of our hearts and gave such strength to our little girl that He is making it happen! We are beyond elated and hope you all will celebrate with us!

     One more thing I would like to share is about many messages I have received over the last eight months. Many people have commented or asked how a loving and good God could have done something like this to our daughter.  This very question is something we have asked ourselves as well. And honestly, I truly dislike that cookie cutter answer of "It's all in the plan". As Christian's, yes, we do believe that God has a bigger plan and that whatever happens in our short lives while on earth, it plays a small role in the bigger picture. But I also believe there is something else at play here. I truly believe that cancer is not something that God inflicts on His people, but it is a product of living in a broken, sinful world where Satan is allowed to do his worst. Our family has been inflicted with this calamity, sure, but so many unexpected things have come out of it. It says in the Bible that God uses our suffering and pulls out the good from it. I have seen God more vividly than I ever dreamed possible, and so have my children. Any doubts that I had in my belief in Him have been dispelled and I would not change that for anything. Also, He has shown me the amazing intricacies and power of the human body which have only led me to believe more and more that He divinely created us. Its doesn't make any sense to me that Hazel's body, fighting the way it has, could be an accident. Also, we have seen THOUSANDS of people affected for good because of our family's journey. We have been given the ability to change the world of childhood cancer at a global scale and we feel so thankful for that as well. We also have all grown so close together as a family in a way that we would never have otherwise. We take NOTHING for granted anymore. We also have seen that without this suffering, our family would not understand compassion the way that we have. Our kids and family are helping & caring for others and we have seen so much compassion for our family as well.  And lastly, I have come to understand God's long suffering in such a tangible way and have been able to learn more from that than any other thing in my life. He suffered in the most horrific way. Not only did Jesus (God incarnate) have to die and suffer in the most horrific way imaginable, but His Father had to watch His son go through it. I feel, in some small way, we have been able to understand that suffering and are able to learn so much from Him in how He handled it. He has given us so much strength, peace, courage and understanding. And I absolutely know that is GRIEVES HIS HEART to watch his children go through this kind of suffering, but ultimately we know that it will only make all of eternity with no suffering that much sweeter!

     I will let you all know what day we get to go home, but I may not post for a little while because I wanted to enjoy EVERY SECOND we get a home! Have a wonderful Christmas!!!

Rehab

*DAY +66 POST TRANSPLANT & 73 STRAIGHT DAYS IN THE HOSPITAL*

     First, I want to thank you all so much for your comments, messages, thoughts and prayers over these last 10 days.  It has been so busy, and quite overwhelming at times, so knowing how many people are behind us and rooting for our little family helps keep us going.  Now our little Hazelnut has been moved to the inpatient rehabilitation floor and has been there since Monday.  We knew she had a long road of recovery ahead of her and were hoping so much that she could do it from home, but this was not the case.  Dr. Craig, the head rehab doctor told us she is a very complex patient and may need anywhere from 4-6 weeks of inpatient therapy.  Of course we will do whatever it takes to get our daughter back to where she needs to be, but this news was so heartbreaking for us.  We wanted so badly to be home for Christmas and to finally be all together as a family once again, and now we have to wait so much longer!  They did tell us, however, that in all likelihood, she can get a 12-hour leave pass to come home on Christmas day! So we will take it!  

     Her days on this unit are intense and long.  She goes through three hours of therapies, consisting of: speech, occupational and physical.  These are usually broken up into half-hour or hour sessions spread throughout the day with breaks for meals and nap time.  As part of her physical therapy she has had two casts put on her legs.  Her heels, calves and hamstrings are so tight after being in bed as long as she was, and the casts are being used to helps stretch them out so we can get her standing and walking again. Upon arrival here, Hazel was very weary and untrusting of everyone around her.  The huge strides she made before seemed to disappear overnight.  She clammed up and seemed almost defeated.  This of course took quite a toll on me (which everyone seemed to notice).  But as time has gone on, she has warmed up and become comfortable with her routine and her therapists, which is making all of our jobs much easier.  Another thing that has lifted her spirits is the fact that we are finally allowed to go downstairs and outside!!!  This has done wonders for all of us!!  She even had her siblings come for a visit and many tears were shed by all of us.  

     Now on top of rehab, we have also had to move forward with her cancer treatment, which means we began radiation on Thursday.  I think I will save all the details of this for another post, because it is a complex process.  But I do want to share something else that has been truly remarkable.  Over this last week, I have been praying, and asking others to pray very specifically that we could finally see a glimmer of our little Hazelnut come through.  It has been about a month and a half since we have really seen our daughter and Aaron and I have had hearts full of anguish.  Well I am happy to report that our God is a faithful God!  He knows when our hearts are weary and how to lift us up.  For He promises in Isaiah 40:31: "but they who wait for the Lord shall renew their strength; they shall mount up on wings like eagles; they shall run and not be weary; they shall walk and not faint." His answer to prayer came Thursday afternoon.  It was as if something was plugged in and Hazel just showed up!  She has been talking so much and has used so many words and phrases that are so very specific to her and it has been unbelievable!  She also has sang the lyrics to entire songs, is playing with toys the way they should be played with, is staying on task and is being playful and goofy!  It has been a wondrous few days so thank you, thank you, thank you for your prayers!!!!

Best Days In Weeks!

*DAY +56 POST TRANSPLANT & 63 STRAIGHT DAYS IN THE HOSPITAL*

     I came back to the hospital on Tuesday after a much needed break at home and a quick weekend getaway with Aaron (something we absolutely needed much more than we realized), and our little Hazelnut has made some huge strides!  She has been saying words and even took a few steps!  When she walked yesterday, she was so proud of herself and started smiling halfway through.  She walked back and forth from the couch the the bed about three or four time and that tired her out for the rest of the day and after seemed to shut down.  When she woke up this morning, she still seemed to be in a bad mood and quite tired, so we didn't push her at all.  But then, as we watched the movie "Brave", she started laughing and perked right up.  After this mood change things started happening!  She spent the whole afternoon and evening saying so many different words (mostly just one at a time, but a few two-word phrases), smiling and giggling, and answering simple questions!  She would also complete song lyrics by filling in words.  For example, I would sing "Twinkle, twinkle, little:" and she would say "star"!  While watching her favorite movie "Tangled" she would say words just before a line was spoken.  And, most preciously, she said "AMEN" after we finished praying before bedtime! She hasn't done any of this in weeks, and today I felt like we had the small first glimpse of our little Hazelnut, so I am absolutely elated! THANK YOU GOD FOR GIVING US A MIRACLE!!!
     Another wonderful thing that happened today was that we were moved out of the Bone Marrow Transplant Unit to the regular Oncology Unit.  This means Hazel is out of isolation and we can get her out and about.  I know this will do wonders for her!  It also means I don't have to leave the room every time I need to use the restroom or eat; I don't have to wear blue shoe covers at all times; and I can see more of my family while here at the hospital.  So this is great news for me as well.  
     Hazel still has quite a bit of recovery ahead of her, and tomorrow she will be evaluated by the rehabilitation team to determine if she will need be moved upstairs for inpatient rehab, and for how long.  Please pray that if she needs it, it will only be for a short while, and that God will aid her little body in a speedy recovery so we can get home!  Physically, her body is showing small improvements every day and we are so much more hopeful that it is being healed the way that it needs to be, so it is clear to us that God has been hearing all of our cries!  

Small Steps Forward

*DAY +52 POST TRANSPLANT & 59 STRAIGHT DAYS IN THE HOSPITAL*

     Our little Hazelnut has been out of the ICU since Monday and we are back in the Bone Marrow Transplant Unit.  It has been such a blessing to not feel like everything is so critical all the time.  And it truly is such a HUGE step forward to be out of there, so we are extremely thankful to God for getting us through the toughest three weeks.  Over this last week Hazel has had many ups and downs, but overall is making small steps forward.  She is still not speaking and seems to be choosing not to respond to us.  She also seems overwhelmingly wary of any medical professional who come in to see her.  She has lost all trust in this world and seems utterly traumatized and possibly depressed.  Aaron told me today that every time the nurses tried to simply take her blood pressure, she broke out in tears.   Despite all of this, God has shown us many small improvements that bring us glimmers of hope each day.  She has been interacting with us all quite a bit more.  She played with some toys, has given us a few more smiles and giggles (not as much as we want of course!), went on a ride in a wagon and even swayed/danced slowly in her seat to some music with Daddy.  The oxygen nasal cannula has been removed, she has begun sitting up on her own again, and today even took a few sips of apple juice, which means they are beginning to wean her liquid nutrition!  She seems to be in very little, to no pain at all and her urine has been clear for a week!  In addition, she has been assessed and has been working with Occupational Therapists, Physical Therapists and Speech Therapists.  They have spent most of these days just trying to get her comfortable with them and building trust, but they are happy with the small improvements she is making.  They will continue to follow her while we are inpatient and will be able to determine if she needs rigorous, inpatient therapies, or if they are therapies we can continue from home.  Also, the doctors believe that she should be completely weaned off the drugs within the next week or two and, at that point, we can begin talking about going home.  SO PLEASE PRAY WE CAN BE HOME FOR CHRISTMAS!!!!!  

     I have only been at the hospital for two days this week because I was sick over last weekend and did not feel well enough to return until Tuesday, and then on Thanksgiving my Uncle Steve and Aunt Laura were so kind enough to spend time with Hazel at the hospital so Aaron & I could spend the holiday with our other children and family.  It has been so beautiful to be able to spend such an extended amount of time with the kiddos.  However I have also seen how hard it has been on them and everyone else.  Aaron has been working so unbelievably hard and has had to take on the role of a single parent.  He goes to work for our family full-time at a job that he loves but can be stressful.  Then he drives the 35-45 minute commute home to only be able to spend an hour or two with the kids (which consists partly of getting them ready for bed, cleaning up around the house and other busy work).  During a regular week, he is only able to get out to see Hazel a couple of times, and mostly has to wait until the weekend to see her (which must be so hard!!).  While he is at work, my mom takes care of the kids three days a week and my mother-in-law (who has two younger daughters at home still) watches them the other two days.  As much fun and independent as my kids are; they still require quite a lot of care and devotion.  On Mondays, Tuesdays and Wednesdays, we have a babysitter pick up the kids at 5:00pm from the grandparent's house to give them a break and to help Aaron by making sure homework has been done, by getting them fed, bathed and sometimes ready for bed (this has definitely helped relieve the stress so much).  So needless to say, EVERYONE is exhausted and EVERYONE needs a reprieve (especially my hubby).  So please pray for peace, rest and a speedy discharge from the hospital so we can all resume a small amount of normalcy.  One thing I will say, that despite how hard it has been for us all, we feel tremendously blessed to have the support system that we have.  The fact that we haven't had to worry about the logistics at home is an incredible thing to behold.  We can't even begin to thank those who have supported us through this time. 

     Another way that help has been coordinated for our family is through a wonderful organization called Here To Serve, created by my now dear friend Katie Quintas who's teenaged son and husband were diagnosed with cancer within six months of each other several years ago.  She knows all too well what a family needs on the home front, and since her son has been caner-free, she wanted to come along side other families in crisis to help them figure out how to get the help they need. Through her organization, we have an online "Care Community" where all of the help we need can be organized in one central location.  On our page you can find a meal calendar, a list of needs, family updates and much more. If you would like to join our Care Community, please follow these instructions:

• Go to www.heretoserve.org and click on the "JOIN" button.
• You will be asked to fill out an extensive registration form indicating you are interested in joining Hazel's Care Community.
• Once completed, you will be emailed a direct link to Hazel's Care Community, and once you follow the link, you will become a confirmed member.
• As you take this journey with us, please consider offering your donations and support to this wonderful organization so they can keep serving families in need!

Some Quick News

*DAY +47 POST TRANSPLANT & 54 STRAIGHT DAYS IN THE HOSPITAL*

     I have been back at home since Saturday to spend some much needed time with the other kiddos. Also, I've been feeling a bit under the weather, so I need to keep the possible germs away from Hazel. I have turned off technology for the most part this weekend so there would be no distractions, so if you have texted, emailed or messaged me on Facebook and haven't gotten a response, this is why!  Even though I am still home, I wanted to take the time to give you all a quick update on Hazel because I have some great news to share! Hazel's MRI came back clear!!!!!!  There was nothing on the scan that would cause the symptoms she has been having, and we are so relieved! After the MRI, they also did a EEG where they hooked up all of these sensors on her head to measure her brain activity in order to rule out seizures and that also came back clear! What it did indicate is that Hazel is mostly sleeping or in a very dazed state. So both these tests are just two more signs that all of Hazel's symptoms are most likely drug or metabolically related and will not be permanent! So keep praying for her recovery, because it's working. And selfishly, I want to ask you to pray for her recovery to speed up. We are all so unbelievably tired and miss our little Hazelnut and our whole family united. Our patience is wearing thin and we just want to be home. So also pray that we keep relying on God's strength to get us through! Lastly, we also got word this morning that Hazel will probably be moved out of the ICU in the next few days or maybe even today!! Thank you all so much for your incredible support!

A Roller Coaster

*DAY +42 POST TRANSPLANT & 49 DAYS STRAIGHT IN THE HOSPITAL*

     The time we have spent in the ICU has been such a physical, emotional and spiritual roller coaster.   Our little Hazelnut's body will make improvements in some areas, then seem to go backwards in others or new problems seem to pop up.  The improvements have been so wonderful for us to see, and despite the setbacks, and how they affect us emotionally, the doctors keep telling us we are staying on the right path (which is all we can ask for in the ICU).  First, let me share that the tremors have stopped!  She sometime's twitches a few times throughout the day, but the uncontrollable shaking that she has been experiencing for almost two weeks now is finally over.  The doctors are less concerned now that something neurological is going on!  So thank you for those specific prayers!  The ultrasound of her kidneys have shown no blockages and have not gotten any worse or better. She has continued to urinate and it is getting clearer every day! This means she has stayed off of the CVVH machine, and they even removed the line in her neck today!  They also removed the arterial line in her wrist and the catheter, so tubes keep coming off.  She has also continued pooping, which is another good sign that things are recovering.

     Despite all of these improvements, she is still struggling quite a bit.  As I  have mentioned before, since coming off the CVVH her lungs became compromised again.  With all of the urination, we hoped we would have seen some improvement by now, but they remain about the same.  She still needs an oxygen nasal cannula around the clock and when agitated is not breathing well.  The doctors believe this will improve, but it will just take time (something I hear A LOT).  Also since coming off the CVVH machine, Hazel has not been very responsive.  She had a few days after being extubated, and still on the CVVH when she was quite lucid, and that is when we captured those few smiles.  But since Sunday, she has been sleeping almost all day and all night.  When she is awake, she will look at me or watch a movie, but is not talking or even shaking her head yes or no to simple questions.  She just stares at me.  The CVVH machine acted as her kidneys before and would strongly filter out all of the sedation medication, making it affect her less, and in turn her body would require more.  However, now that she is off the machine, and her kidney function, although improving, is not at 100%, the medication that has been in her system (and the ones still coming in as we are trying to wean her through the withdrawals) are staying in her system more and hitting her quite hard.  The doctors believe she is just pretty "doped up" and will come out of it soon.  They still want to do an MRI, just to rule anything out, but her respiratory status is still not stable enough.  This part has been extremely difficult because we miss our little Hazelnut so much, and just want to see her be herself again! Please pray that she can come out from under these drugs and that her mind is unaffected!  Another issue is with her vomiting.  This is most likely a part of the withdrawal, and she is not doing it excessively, but the vomit has had some blood clots in it which could signal damage to her gut.  So she is now on a strong medication that should help protect it and allow it to recover.

     All of this being said, we are still so unbelievably thankful that she still is continuing to pull through all of this.  These days are very long and we wish we could go home, but the fact that God has even given us these days is an incredible thing.  We will stay here as long as it takes to get her well, fight through these tough and tiring moments and continue to rely on His strength and grace.  

     For any of you who missed this picture, it is one of the very first times I got to hold Hazel in weeks.  You can see how wonderful it was for both of us, but also how much farther she really has to go:

Road To Recovery

*DAY +39 POST TRANSPLANT & 46 STRAIGHT DAYS IN THE HOSPITAL*

     It appears as though this will be quite a long road to recovery for our little Hazelnut.  We have overcome one major in hurdle in removing her breathing tube, but are facing many others that must be overcome.  But let me start with the most pressing issue for us.  The doctors are concerned because the tremors that Hazel has been experiencing, which we initially believed were due to withdrawal from the sedation meds, have been continuing; and she has not been showing other obvious signs of withdrawal (vomiting, sneezing, yawning, diarrhea, etc.).  This, coupled with the fact that she has had quite a bit of trouble forming words, has made them suspicious that something neurological is going on.  They informed us that, in some cases, there can be damage to the brain when a child is heavily sedated for an extended period of time.  The only way for us to know if this is the case for Hazel is to have an MRI done of her head.  However, she is not stable enough to have this scan done, so they decided to continue to watch for other signs of withdrawal, in hopes that that IS the case and may not have to do the scan at all.  The doctors also explained that it could be two different types of damage.  One is treatable, while the other is not.  The one that is not, depending on the severity, could either be permanent or resolve on it's own, in time.  So right now, all we can do is wait (which is so unbelievably hard!).  We beg you for your prayers on this issue!  Please pray that all of these things are related to withdrawal and not from a brain injury. The good news is that God has shown us some encouraging signs these last couple of days.  She has vomited quite a few times (who would have thought we would be happy for vomit?!), has had diarrhea, and has gone a whole day without any major tremors!  So today looked much more hopeful for us, and we need all the hope we can get!

     They also decided, two nights ago, to take Hazel off of the CVVH machine to see how she would do, since she has gotten down to a normal weight and all of her numbers have been looking good.  The biggest sign of recovery, after being taken off the machine, is urination.  The last two days, she did not urinate at all and fluid has begun to build back up again.  The fluid has even traveled a little to her lungs, making it more difficult for her to breathe and for her to need oxygen around the clock.  Before putting her back on the machine, they have decided to do another kidney and bladder ultrasound tonight to see if there may be an obstruction by the clots she has been having or if it is just that her kidneys are not quite recovered enough yet.  We should get those results tomorrow morning.  

     All of this being said, Hazel and our family have quite a lot of work ahead of us.  Brain injury, or not, she will most likely be needing physical, occupational and speech therapy.  She has not been out of bed in weeks, she has not eaten in well over a month, she is having trouble forming speech and is out of practice with many things due to this hospital stay.  Aaron and I have felt very overwhelmed at how arduous this road may be, but he said something today that gave me so much hope.  God has been so faithful to us over these last seven months.  He has brought Hazel through six rounds of chemo, several small and one major surgery, neutropenia, high-dose chemo, a stem-cell transplant, and now has given us the miracle of bringing her through this life-threatening stay in the ICU.  So what makes this leg of the journey any different?  He has always been in control, and He will stay in control for the rest of her life.  He is holding her in the palm of His hand and will carry her through this as He has time and time again.  If we focus on the future and on the "What if's?", then we will go absolutely bonkers.  But if we, instead, focus on the one sure thing we have taken hope in these last seven months, then we can move through each day as it comes with a peace, knowledge, and hope like no other.
     Despite all of her struggles, Hazel is moving in the right direction.  Like I said before, today she suffered no major tremors!  It was such a beautiful sight to see her still.  She is more alert and interactive.  She slept soundly, something she hasn't done in weeks, all last night and for most of the day.  Sleep, I believe will help her recover, so I am glad she is finally able to do it peacefully!  And Hazel's Auntie Laura even got her playing a little.  So we have been finding joy in the midst of all of this, and for that I am forever thankful.