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.

The ICU Experience

*DAY +36 POST TRANSPLANT & 43 DAYS STRAIGHT IN THE HOSPITAL*

     Before I begin the post I am about to write, let me first share with you all how our little Hazelnut is doing.  As most of you know, she was finally taken off the ventilator yesterday!  She has tolerated it extremely well and it has solved many other issues, like her blood pressure and heart rate; so we are so happy to have come over this hurdle.  The last several days on the ventilator have been extremely difficult for Hazel (which I will detail below), and it has been such a sweet relief for the both of us to have that tube out!  She is still slightly sedated but we are coming down on those meds as well. Also, her bilirubin is is 2.4!!!!!!  Can you believe it?!!  After 2 weeks of going up and down and staying around 4, she has finally dropped to 2.4! All of her other numbers continue to look great and her weight is so close to the goal that we are so close to coming off the CVVH machine.  We just need her kidneys to function properly and the clot in her bladder to keep breaking down so she can begin urinating on her own.  Last, but certainly not least, the numbers for her BK virus and Epstein Barr virus have both finally come down within normal range!!  This means her immune system has finally gotten strong enough that it fought them off on it's own. It also means that her bladder will not produce new clots and will no longer be as agitated as it has been (it just needs to clear out the old one!). Such sweet joy!  Thank you all so much for your prayers. God has been so faithful to us in this time.  We could have lost our daughter and He has given us this MIRACLE through your prayers.  I am reminded of 1 John 5:14-15: "And this is the confidence we have toward Him, that if we ask anything according to His will He hears us.  And if we know that He hears us in whatever we ask, we know that we have the requests that we ask of Him".  Our mighty, powerful and loving Father has inclined and heard the cries of our heart, and has felt every tear and is healing our little Hazelnut.  So please keep praying that He continues to do so, because her battle is nowhere near over!
     Now, I want to take this opportunity to share with you all what it has been like in the ICU these last two weeks.  I don't want to shy away from the agony we have felt, because Hazel deserves for the world to know what we face every single day.  The unfortunate thing is that so many do not what the world of childhood cancer is really like (I was included in that group before we were thrusted into this).  It is either too painful for some to face the facts that children are fighting for their lives, sometimes winning and many times not; or they are just simply unaware because there is not enough support & funding behind our cause.  When there is a mass shooting, the world is drawn to attention and demands that the shooter be found and brought to justice (justifiably so!).  But cancer, and it's subsequent toxic treatment (let me remind you that we are in the ICU, not because of her cancer, but because of the life-threatheing side effects from her cancer treatment), kills 7 children each and every day of the year; and our society at large does not seemed nearly as outraged.  So my hope and prayer is that by being completely transparent about our experiences, that others may share in our frustration and be moved to spread the awareness.  So here we go...

• The first few days were probably the most overwhelming.  We saw our daughter struggling for her life and swell up like a balloon.  She had 6 different tubes placed in her body and was put on a ventilator due to the fluid in her lungs making her unable to breathe well enough on her own.  There was always tons of people around and we were inundated with information about machines, drugs, procedures and outcomes.  The biggest worry was that her body was going to go into sepsis. This was also the time we were told that if her bilirubin continued to climb and her liver fail, there was nothing more they could do for her.

• Every day, up until this past Monday, she got a chest X-ray. She also received more ultrasounds of her kidneys, bladder and heart than I can count.  She has continuously been on the CVVH machine, ventilator, and insane cocktail of medications infused through all the different tubes in her body, all while getting her blood drawn several times a day.  She also has a catheter placed that was being flushed every 2 hours (we are now down to every 4 hours), to help break down the clots in her bladder.  As I am sure you can imagine, this was never easy or comfortable for Hazel.  She is also weighed & has her belly measured each day and has her mouth cleaned three times a day.  She also had to be suctioned several times a day through putting as tube down the ventilator to the back of her throat (which was very uncomfortable) because with a breathing tube, one is unable to swallow.

• Each day she is seen by a plethora of health care professionals.  This includes: nurses; ICU residents, fellows & attendings; Oncology residents, fellows, nurse practitioners & sometimes attendings; respiratory therapists, pain management team; psychology team; and our core team of people including Dr. Tran (her oncologist) and her care manager and BMT manager.  In addition to all of these people though, so many nurses and other hospital staff who have come to know and love our little Hazelnut have come down to visit and offer their support and prayers.  It's been truly remarkable and encouraging to see that every day.  We have so many people pulling for her!

• On top of fighting for her life with the VOD and struggling through the two viruses that have been causing unfortunate complications, she has also suffered some other issues.  Her skin has been breaking down, causing peeling in many areas of her body.  One time, when the tape on her face was being changed, it ripped off quite a bit of skin.  All of these places with breakdown have to be cleaned and protected with ointment because they could easily cause an infection that could be detrimental to her.  Sometime in the second week, her IV in her hand stopped working and had to be replaced.  Each time, Hazel has to be poked (one time it took four pokes in four different places to find a good vein) to get another IV in, and even then they have only been lasting about a day.  Finally yesterday she no longer required it! 

• Also in this second week, Hazel began tolerating her sedation medications and she was becoming more and more aware of her situation.  Not only that, but the levels of opiates in her body were causing hallucinations, anxiety and tremors.  Over the last four or five days, and up until yesterday, it had gotten to an unbearable point for both Hazel and myself.  This was when I wrote the last blog and could not bring myself to write anymore.  She has been trashing about in her bed, throwing out her arms to grab hold of me and has had a look of pure terror on her face.  She also was so unbelievably frightened by the breathing tube, bringing her to a point of choking on it throughout the day and night, sometimes making her change color.  We ended up in a vicious cycle of having to give her more sedation meds to help her deal with the fear of the breathing tube, but the sedation meds were also causing anxiety, hallucinations and low blood pressure.  I have knows for days that the best solution was to get that tube out and allow Hazel to be conscious enough to receive comfort from me.  But of course we had to go through all of the red tape before this could happen.  We were all ready to go at 8:00 yesterday morning to have her extubated, when her blood pressure dropped.  This made the doctors fear her heart could not handle being off the breathing tube.  So we had to run tests and do a heart ultrasound before being able to move forward.  Once that all came back okay, and we were once again close to extubating her, her oxygen levels dropped.  After hours of watching her closely, it was determined that the oxygen levels were directly correlated to the times of anxiety, thrashing and choking.  So finally, at 5:00pm yesterday, her breathing tube was removed!!  Immediately, we saw a rise in oxygen levels, a rise in blood pressure, and her heart rate came back down to normal.  Praise God we got through this hurdle, because this was one of the most difficult things for me to watch my baby girl go through.

• Today, Hazel is so much more comfortable off the breathing tube, but she is still dealing with some tremors and anxiety.  We have weaned her off most of the drugs and have her on an anti-anxiety medication to help ease the transition.  I have been using as many natural things that I can in this situation, such as massage and aromatherapy (part of the natural remedies we have been using to support her through treatment).  And although it is better today, it has been very difficult to manage.  But I continue to remind myself that Hazel is alive(!) and we will get through this; it's just the "getting through" that is going to be hard.

• I am sure that there has been more that I am forgetting, but one other thing that I want to mention are the things we have missed because of cancer and the need to be in the hospital:
• Our wedding anniversary
• Fourth of July
• Grandparent's 60th wedding anniversary party
• My birthday
• My other kids' field trips
• We were in the hospital for Elizabeth's first day of school, but I made sure to be there for that
• Micah's 7th Birthday
• Jonah's 1st Birthday
• Halloween
• Aaron's Birthday
• And many more memories and moments...

     Needless to say, these past 43 days (and mostly the last two weeks) have been some of the hardest of our lives.  We are so ready to go home!!!

A Light At The End Of The Tunnel

** DAY 33 POST TRANSPLANT & 40 STRAIGHT DAYS IN THE HOSPITAL**

     You guys, God has got this!  Our little Hazelnut is going to make it through!  Each day brings us closer and closer to the end of the tunnel that we can finally see the light, and it feel tremendous to be able to say so. Her bilirubin continues to stay at 4 and below, and all of her other numbers continue to drop and move in the right direction.  She has had X-rays done on her lungs every day and they keep coming back better and better.  The past few days they have looked so great that as soon as she is off the CVVH machine and some of the sedation medications, she can easily come of the ventilator.  She also had another kidney ultrasound which showed the left kidney remaining stable and the right one improving! Her weight today was 15.4 kilograms.  If you don't remember, her normal weight is 14.4kg and she was all the way up to 18.7kg (that's nine and a half pounds in gained fluid!), so we are so close to our goal. Her belly girth measured in at 53cm (down from 65cm and originally 50cm).  As soon as we get her back down to her original measurements and if her numbers remain stable, they can begin taking her off of the CVVH and breathing machines.  So please pray that this happens and that when they do begin to take her off, that it all goes smoothly!
     Although she is closer to recovery, she remains sedated and still faces many challenges every day.  It has been so taxing on all of us, and quite honestly I don't have the emotional stamina to be able to put it all into detail now, but I will soon.  Please know that this is still a daily battle and so we still need your daily prayers!  I can't wait until I can post a picture of her smiling face to show you how your prayers have reached the ears of our Father, but for now, here are a few from our stay at the ICU:

Being transferred to the ICU

This was just before she was put on the ventilator

Most of the machines that helped keep Hazel alive

This line was placed in her neck for the CVVH machine

This was taken just now...We still need prayers!

In The Right Direction

**DAY 29 POST TRANSPLANT & 36 STRAIGHT DAYS IN THE HOSPITAL**

     These last six days have been some of the most spiritually, physically, mentally and emotionally exhausting that I have ever experienced in my life.  They have compared quite equally to those first few weeks that we found out the our little Hazelnut had cancer, and I never thought I would experience anything like that again.  I have been praying very specifically over these last days, but maybe not in the way you think.  Of course I have begged for my daughter's life, but Aaron and I have also had the understanding that it is not in  the doctor's our our control, but only in His.  He has given us so much assurance that whatever happens with Hazel, be it she beats this thing or that it takes her life, that He has a bigger plan and we get to be a part of it.  Whatever the outcome, we have complete faith that it would give Him the most glory and that Hazel and we could celebrate with Him in that.  But aside from imploring God on our daughter's behalf, I just simply asked Him to make His presence known; to just show up.  The first few days I felt so alone and my faith and hope that I have clung to were tested and shaken.  But my God is an AWESOME God, and boy did He deliver!!  The very next day, after tearfully saying this prayer, we became inundated by all of your messages of prayer, faith and encouragement.  Hazel's page has gained almost 30,000(!!) new followers and we know that she is being lifted up in all corners of the world!  This has been such an encouragement, and I don't think you can understand what it means unless you've been where we are, so thank you from the bottom of my heart!

     He has also revealed Himself in so many small ways over these last six days, and one really sticks out.  My father-in-law, Jerry, was out to lunch with a friend, and they were talking about Hazel.  His friend had literally just finished saying "She is going to get through this thing" when Jerry opened up a fortune cookie and read this:

Now, I am not one to take stock in what I read on my fortune cookie, and I do not presume to know that this must have been a message from God.  But I do believe, with all of my heart, that He used this little message on a piece of paper to speak to our family, in order to bring us hope.  And each day He has continued to give us more hope, when only a few days ago I thought there was little or none to be had.

     Hazel's condition continues to be serious, but so many little things are improving and continue to lead us in the right direction.  For the first time, the doctors seem to have more hope than concern and seem to have a much more positive outlook for her.  Here is what is happening:

• The CVVH machine is doing exactly what it is meant to do, and her body is tolerating it well.  Hazel cam in with so much extra fluid on her body (about 9.5 pounds of it!) that her normal 50cm belly has been measuring about 65 cm!!!  Over the last few days it has come down, and today I am happy to report that it measured at 56cm!  Our God is working miracles!!!
• Because the fluid is being removed, her lungs are improving every day.  The X-rays she has been having every morning have revealed less and less fluid retention and they continue to go down on the ventilator and she is even taking several breaths on her own!  She will most likely remain on the ventilator the entire time she is on the CVVH machine, but this is a good thing.  It is allowing her body time to remain stable and rest so that God can heal it.
• The ultrasounds on her kidneys have revealed that nothing has gotten worse, and the labs that tell us how they are functioning keep going down, which is a sign of improvement.  We had another ultrasound done today, but we still have yet to receive the results.
• Her bilirubin has remained stable and has not increased dramatically (the sign of liver failure) and her labs indicating liver function continue to look good!
• The BK virus levels in her blood keep going down, so hopefully she will kick this virus soon!  She is still having some discomfort and there are still problems with the clots in her bladder; but until her fluid levels are under control, there is not much for urology to do except keep an eye on it. That is one thing I have learned over this last month, that there is so much "watching & waiting" and it drives me crazy!  I have to constantly remind myself that God is in control!
• The doctors believe that in about 3-5 days time, they will have removed the extra fluid from her body and will begin trying to take her off the machine to see if her kidneys and liver are strong enough to do their job once more.  So hopefully, we will have a lot more concrete details and answers at that time.

     The last two days have been filled with so much more peace and hopeful news.  Please pray that we continue to stay in this "right direction" and that she will make a full recovery!

More Information on Hazel's Condition

**DAY 26 POST TRANSPLANT & 33 DAYS IN THE HOSPITAL**     

     Yesterday was an extremely overwhelming day.  We saw so many different doctors and they all told us slightly different things, so we have been on an emotional roller coaster.  The thing of biggest concern was her bilirubin levels.  The bilirubin is one of the indicating factors of liver function, and if it rises, it means her liver could begin to fail.  Over the last days it was slowly rising; starting at 2.4, then 2.8, then she was at 3.1 when starting on the CVVH machine.  After being on it for a day, the hope was that the bilirubin would have shown an decrease, but it actually went up to 4.0, being the biggest jump yet. This was very concerning to one doctor in particular who basically told us that we are already hitting her with everything we've got, and if her liver function does not respond and her bilirubin keeps rising, then there aren't really many other options.  This left us absolutely devastated!  But then two other doctors came in to tell us that many times the bilirubin goes up for a day or so before it goes down, and not to worry.  The numbers are probably indicating the damage that has already occurred, not any new damage.  And the damage is reversible with this treatment, if successful.  In addition, they assured us after looking at all her other numbers (blood gas, liver enzymes, blood pressures, the amount of fluid that's coming off, etc.) that she is on the right track for recovery (Praise God!!!).  She is still seriously ill and we need to remain vigilant, but on the right track nonetheless!  Another concern has to do with a very important medication that can help reverse the VOD.  It acts something like a blood thinner, which can be dangerous since Hazel has already been struggling with bleeding and low platelet counts.  She had some increased bleeding yesterday, so they stopped the medication, but restarted it because the bleeding stopped.  This is something we have to keep a very close eye on, because today she has shown signs of bleeding once again.  PLEASE PRAY FOR THIS BLEEDING TO STOP!!! Another worry has to do with the BK virus.  This complication has made it very difficult to urinate and they are worried that it will cause fluid back up into her kidneys.  They did an ultrasound and saw that there is a little fluid back-up but want to check again today.  If it has gotten worse, then they will insert two tube through her abdomen, directly into her kidneys to help drain the fluid.  So please pray that it hasn't gotten worse but if it has, to guide the doctors to do what is best for Hazel!

     Today has come with mostly good news, so your prayers are working! HER BILIRUBIN DROPPED TO 3.6!!!!!!!!!!!!!  THIS HAS BROUGHT US SO MUCH RELIEF, SO KEEP PRAYING THAT IT CONTINUES TO GO DOWN!!  Also, they were able to go down on her ventilator a little, which probably means her lungs are improving!!  Although terrified for our daughter, God continues to show us His presence and gives us hope that she will recover.  It is a constant battle to hang on to this hope because to us, her situation seems to dire.  But we have never been here before, so we have nothing to compare it to.  We just have to trust what the doctors tell us, and most importantly trust that God is in control and has a plan for all of this, no matter the outcome.  Thank you all so so much for your continued support and prayers, and please keep them coming!!!

Update

     First of all, let me start off by saying how humbled we have been by the outpouring of prayer and well wishes we have received over these last hours for our little Hazelnut.  God is making it so evident that He is present and that we have so many people behind us, and it truly lifts our spirits.  Since I am sure most of you want to know how we got to the ICU, let me clarify a few things:

• She has been fighting this BK virus in her bladder, which has been causing the bloody urine and clots in her bladder.  It has been unbearably painful for her since Sunday, and she has been unable to pass the clots on her own.  So yesterday, the urology team decided to take her to the OR for a procedure (not surgery), where they put a camera through her urethra and a tube to help remove the clots that have been causing all of the problems.  She was in for two hours and the clots were so large, they were unable to remove them, but they did get some smaller ones out.  So they tried their best to break in up in the hopes that over the next days she would (painfully) pass them on her own.  Unfortunately since the procedure she did not urinate at all, so they have had to insert a catheter to help flush things out.  This has only been slightly successful, so they are now going to do an ultrasound on her kidneys to make sure they are not damaged.
• Unrelated to the bladder complications is the VOD.  The VOD has been causing such extreme fluid retention that it is causing problems with her liver.  It makes her very uncomfortable and can be life threatening if we are not vigilant and extremely proactive.  That is when the decision was made to move her to the ICU (not because of the procedure with her bladder; although this is still an unfortunate complication we have to deal with).  
• The ICU is providing several things for her care.  The first, and most important, is she is hooked up to a machine called CVVH (Continuous Veno-Venous Hemofiltration).  It works by inserting a line in her neck that has two tubes coming out.  Fluid is flushed into her body that then grabs the excess fluid build-up and helps pull it out through her blood since her body has been unable to do it on her own.  The blood gets filtered and warmed and is then put back into her body.  Removing the fluid is critical to reverse the effects of VOD.  And the VOD is not a permanent problem (praise God), and can be reversed, but it is presently very serious.  The doctors said that although it is serious, they have it under very tight control and are ahead of it.  They are very good at treating this, and have seen much worse cases than Hazel's.  That makes me feel relieved, but in now way does it make anything easier.
• The fluid build up has also moved to her lungs and has made it very difficult for her to breathe well on her own.  Her body has worked so hard just to breathe, and she needs to rest in order to heal, so they have decided to put in a breathing tube.  Even though it is very hard to see her with it in, it has allowed her to finally be comfortable.  It is the very first time I have seen her pain free in several weeks.  I would not trade that for anything.

     We do not know how long exactly that we will be in the ICU, but this time here is so important.  The doctors, nurses and specialist have to remain very vigilant so nothing get's out of hand.  But we know she is in the right place and will get the care that she needs.  And ultimately, we know that our mighty God has her in the palm of His hand and is the one who is in control of the entire thing.  Please pray for our whole family as we navigate through these next days, and pray for complete restoration!  Here is a picture of Hazel and her army of machines fighting for her:

ICU

Hazel had to be transferred to the ICU last night due to complications from the VOD and the BK virus. I don't have time for more updates, but please be praying for her and for our whole family!!!

Please Keep Praying...

     Beginning Sunday night our little Hazelnut began feeling unwell and has not felt any better since. The good thing is that we have some answers finally; maybe not the ones we want, but answers nonetheless.  On top of the BK virus (which is still causing a lot of pain and gives her bloody  and clotted urine), Hazel has also developed the Adenovirus in her bladder AND the Epstein Barr virus.  She has also, unfortunately, begun to develop the one thing we hoped that she wouldn't: VOD (veno occlusive disease).  It's a condition where some of the veins in the liver become obstructed, and her liver can no longer function properly or even be able to filter her own blood.  Some of the signs of VOD are fluid retention, weight gain and an elevated bilirubin.  She is presenting with all of these. It can be a very serious and life threatening condition, especially if left untreated.  Before her transplant even started, this disease was the main topic of our consultation meeting, and we were (and continue to be) assured that they are extremely vigilant and aggressive in treating this, and have been very successful.  We have witnessed that over the last few days.  She has been put on more medications than I can count, we have had consultations from several doctors and she has been examined by the ICU team.  As of right not, she does not need to be transferred to the ICU, but they are very aware of her situation, and if anything changes, we will be moved.  
     The goal right now is to, as quickly as possible, get the fluid and weight off because this will only exacerbate the VOD.  But the problem is that she requires more fluid to flush out the bloody urine from the BK virus.  But the more fluid we give her, the harder it is to take it off.  To help get the fluid out, she is on medications to make her urinate as frequently as possible. They have lowered her fluid slightly, and will now put a catheter in to flush out the blood and clots in the hopes that she will no longer rely on a higher fluid intake.  A urologist will be coming for a consult to possible do a scope to rule out any tears in her bladder that would have to fixed surgically. She is also still vomiting and finding it hard to take her oral medications, and right now is requiring a little bit of extra oxygen.  She has received several blood transfusions and more platelet transfusions than I can count.

     PLEASE KEEP PRAYING FOR MY DAUGHTER!  AND MAKE THE WORLD AWARE OF CHILDHOOD CANCER!  WE NEED LESS TOXIC TREATMENTS FOR OUR CHILDREN! 

A Step Forward & a Step Back

*** DAY +18 POST TRANSPLANT ***

     Our little Hazelnut is back!  She got several nights of great sleep, she's smiling, playing, being silly and bringing joy to everyone around her.  God has restored her spirit and I am so thankful!  Because her counts have been so low, Aaron and I made the choice that I would not take my chances going home and being exposed to something, only to bring it back to her.  So I have remained at the hospital since October 2nd, and he has only been able to visit a few times.  But since her counts have remained good, we felt it safe enough for Aaron to come stay the weekend with Hazel and for me to go home with the other children!  It was wonderful to spend that time together!  Hazel was feeling good and was so cheerful.  It was comforting to Aaron to have those moments with her.  As for me; I was able to carve pumpkins and decorate the house for fall, we rode bikes, watched movies and played games.  

     Despite all the progress she is making with her energy level, we have had several setbacks that will assure we will NOT be coming home this week.  She is still not eating or drinking, her nose continues to bleed and she is relying on several platelet transfusions, she she has spiked another fever and has had blood and clots in her urine (which has been painful for her and disrupting her sleep).  We have been doing many tests and this is what we know so far:

• The bloody urine came back positive for something called BK virus. They had to increase her fluids to flush it out and she had a few days where it seemed to clear up and she had no problems.  But this evening it came back with a vengeance.  It has caused a lot of pain so they had to re-increase the morphine.  They are even discussing putting her back on a continuous drip, which will only keep us here even longer.
• Most likely because of her BK virus, her counts have dropped a bit today.  Please pray that this does not become a trend!
• Her fever has led us to draw blood cultures from her central line to test for infections, but so far they have all come negative. 
• There continues to be no common symptoms that would indicate VOD
• Today, because of the fever, she had a CT scan to see if there is something fungal growing somewhere in her body.  This also was negative (praise GOD!)

     Although I am very happy that the test all continue to come back negative, I am also feeling very anxious.  The doctors seem at a loss for what would be causing this fever at Day +18 and keep running tests with no conclusive results.  So please pray for discernment for the doctors and that God would guide them to figure out what is wrong with my daughter.  And please pray that it is just a side effect from the transplant and nothing else!

     Though these days are difficult, my mighty and powerful God has remained ever faithful in carrying me through them.  He has comforted me in my sorrow, has lifted me up in joy and has displayed Himself to me in ways that I have never experienced.  And it is the prayer of my heart that everyone may see how He has worked in our family's life.  These last few weeks have been extremely arduous and sometimes very overwhelming, but I have taken comfort in His promises and, tonight, Paul's prayer to the church at Ephesus has really spoken to me and I hope it does to you:

Ephesians 3:16-19  I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge-that you may be filled to the measure of all the fullness of God.

Pray for Healing

*** DAY +12 POST TRANSPLANT ***

     Aaron, Hazel's Daddy came for a visit yesterday, and he brought out the first smiles I have seen from our little Hazelnut in over a week.  It was so wonderful to see!  She was still pretty tired and unwell, but we had quite a few moments where we saw her spunk shining through.  She played for a little while and spent some time just being silly, and it was absolutely glorious. I savored that moment because these last few days have been exhausting!  Hazel is not sleeping very well at night, which means I am not either.  So we have two tired ladies trying to navigate this world of transplant.  I think we both are done with it!  Today, her smiles have faded, she does not want to get out of bed, and just looks all around bummed out.  The GCSF serum that is used to boost her white counts can make her feel achy and have bone and joint pain, and since her counts are up, they are discontinuing it.  So hopefully she will be in better spirits tomorrow. Although her counts have been absolutely outstanding (praise God!) and her mouth is looking better, she still seems quite uncomfortable.  I have tried to get her to eat and drink, but she says it is too painful.  I am sure that it still doesn't feel good, but I think it has now become an anxiety issue.  Because she has been in so much pain over the last week, she is now terrified to swallow anything.  This even includes her own saliva, which keeps pooling in her mouth and she is drooling like nobody's business.  The mucous is no longer as thick and she is no longer gagging on it, so her sores are getting better, but we are not quite there yet.  She also seems afraid to urinate and pass a bowel movement, so it's yet another thing for us try and treat and to be worried about.  They tested her urine for any signs of infection, but thankfully it all came back negative!  She has been complaining that her tummy hurts quite a lot, which I assumed was from the mucousitis; but today she said her tummy had "too much" in it.  So I asked the doctor if the IV nutrition (TPN) that she has been receiving can make her feel uncomfortably full, and they said it is definitely a possibility.  So they are lowering her dose of TPN and I hope she may feel a bit better and will want to start eating something again.  With her counts being as high as they are, the doctors advised that we start weaning her off of the TPN and morphine with the hopes to slowly get her back to normal.  If this can all happen successfully, we may be heading home early next week!  Please pray for this to happen and please pray for healing.  It has been so hard to see my quirky, energetic, silly and joyful girl be so down and out.  I don't want to see my baby hurting anymore!  And I have not seen my other children since October 2nd and am yearning for their hugs!