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!!!