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! 

        

Houston We Have a White Count!

     Wednesday night our little Hazelnut's fever broke without Tylenol and has only returned twice for about an hour!  Thank you all so much for the prayers because they absolutely worked.  The moment I needed a reprieve God came through and brought me peace.  I am so thankful. Yesterday she had a white count, but I didn't want to get my hopes up because sometimes they can fluctuate.  But today, they went up again!  They even went up enough for her counts to show an ANC (absolute neutrophil count) of 428!!!  This means her stem cells are grafting, are rebuilding and we are on the upswing! Usually, they like to see her ANC be above 1000 for at least three days, so we still have a ways to go; however, the doctors were all quite surprised they jumped so quickly.

     I cling to good news because a rising white count means healing, but she is still feeling pretty crummy. She is extremely tired and quite uncomfortable, but her pain is being managed well on the morphine.  She still has pretty bad mucousitis and spends a lot of her gagging and coughing up gunk, but, dare I say, it seems to be getting better by just a smidgen.  Again though, I am thankful that this is all she is facing, because she shows no sign (and prayerfully never will) of any of the scary & life-threathening side effects that many other kids face during transplant.  The things that are happening to her are normal and she will get through, and the doctors are very happy with how she is looking and how she handling it all. So please keep praying that she amazes us!!

In The Thick Of It

*** DAY +6  POST TRANSPLANT**

     The day that I have been dreading has arrived.  Our little Hazelnut is miserable.  Her blood counts are down to nothing, and we are just waiting for them to rise.  The mucositis has produced such painful sores that have traveled through her digestive track.  And it also produces an excess of thick mucous that continues to make her gag and eventually vomit.  Thankfully, she is no longer nauseous, but she still hasn't eaten for days.  We are also battling a fever that has reached up to 103, but it has been extremely difficult for her to take the oral dose of Tylenol she needs.  It is so painful for her.  I asked if there is an IV form available and the doctor told me that there is, but it's very expensive so they avoid it at all cost.  So they torture kids to inject medications that cause them extreme amounts of pain to save a buck (can you tell this bothers me a little?).  In addition to the normal hydration flowing in through her central line, she is now on IV nutrition, a cocktail of different antibiotics to combat a possible infection that the fever may be indicating, anti-nausea meds, benadryl to prevent an allergic reaction to one of the antibiotics and a continuos pump of morphine, which has finally allowed her to rest a comfortably as possible.  She is no longer crying out in pain with the help from the morphine, but she is obviously quite unwell.  She has spent the last two days laying in bed, drifting in and out of sleep and is barely speaking because it hurts too much.  Needless to say, these last couple of days have been extremely difficult.

     But, in true Hazel fashion, she is amazing me with her ability to cope and adapt to such a terrible situation.  She still finds things to smile at, and allows all of us to poke and prod her because, ultimately, she knows we are trying to do what we can to help her.  She has been able to communicate very well to me and tells me when there is something that she needs.  The doctors say for the kind of pain she is most likely in, she is doing extremely well and that it should hopefully only last for a few more days.  WE CAN DO THIS! OUR GOD CAN CARRY US THROUGH!

     I am so thankful for all of your prayers and have received many messages with bible verses to encourage me during this time; and it has helped so much. I feel lifted up by your prayers and God has kept me from falling into the darkness of despair.  Without Him and without you, I know I could not be getting through this as well as I am.  So please, keep them coming!

Deuteronomy 33:26-27  "There is none like God, O Jeshurun, who rides through the heavens to your help, through the skies in his majesty. The eternal God is your dwelling place, and underneath are the everlasting arms."    

FAQ's

     Over the last few days I have received several messages and comments wondering a lot of the same things, so I thought I would put together a quick FAQ post!

Q: Who is Hazel?

A: Hazel Hammersley is a 2 year old girl from Simi Valley, California. She is part of our very young family, which includes 3 additional young children; Micah (7), Elizabeth (4) and Jonah (11 months). Hazel, or "Hazelnut", as we like to call her, was diagnosed with a High-Risk, Stage 3 Neuroblastoma on April 24, 2013. 

Q: What is Neuroblastoma?

A: Childhood cancer is the #1 disease killer in our children; more than asthma, cystic fibrosis, diabetes and pediatric AIDS combined!  Neuroblastoma is a solid tumor form of childhood cancer that originates in the sympathetic nervous system, the nerve network that carries messages from the brain throughout the body. The cause of neuroblastoma is unknown. When neuroblast cells fail to develop normally they form tumors in the nerve tissues, usually in the neck, abdomen, or pelvis, and most commonly in the adrenal glands. Nearly 70% of those children first diagnosed with neuroblastoma have disease that has already metastasized or spread to other parts of the body. Neuroblastoma has one of the lowest survival rates of all pediatric cancers. For more information please click http://www.cncfhope.org/ 

Q: How can I send a gift/note/card to Hazel? 

A: Please use the following address
Hazel Hammersley
Hope For Hazel
PO Box 1449
Simi Valley, CA 93062

Q: How can I send Hazel money/contribute to Hazel's fund?

A: If you'd like to contribute to Hazel's Fund, please visithttp://talbertfamilyfoundation.org/pages/Hazel.html Click on the yellow "DONATE NOW" button. 100% of your donation goes to our family. No donation is too small. Checks can be mailed directly to:
THE TALBERT FAMILY FOUNDATIONHazels Fund 
25003 JIM BRIDGER ROAD
HIDDEN HILLS, CA 91302 

Q: How can I get a "Hope for Hazel" bracelet? 

A: If you'd like to get a "Hope For Hazel" bracelet, please contribute $5.00 (or $9.00USD internationally to account for added postage) to http://talbertfamilyfoundation.org/pages/Hazel.html  Indicate the word "bracelet" in the gift comment section and how many bracelets you would like, and we will get one out to you asap. Once you get your bracelet(s), please send us a photo of you wearing it and include your smiling face and a photo caption. You can get it to us using the private messaging feature on our facebook page. We'd love to include your photo in a photo album we're making. Thank you! 

Q: How do I get a "Hope For Hazel" T-shirt? 

A: If you'd like to show your support for Hazel and her family, you can purchase a "Hope For Hazel" t-shirt!  To do so, please contribute $20.00 (or $25.00USD internationally to account for added postage) to http://talbertfamilyfoundation.org/pages/Hazel.html  Indicate the word "T-Shirt" in the gift comment section, how many shirts you would like and the sizes, and we will get one out to you asap. Don't forget to send us a picture when you wear your new shirt!

Q: I'd like to send Hazel a gift. What does Hazel like?

Hazel loves the color blue, Disney Princesses (especially Rapunzel), Hello Kitty, Madeline and Minnie Mouse. Hazel wears a size 4T. Please use the following mailing address
Hazel Hammersley
Hope For Hazel
PO Box 1449
Simi Valley, CA 93062

Q: Can I send something to Hazel's siblings?

A: Of course!  Siblings often feel left out when their sibling going through treatment gets tons of attention.  So if you feel you would like to bless our other children, you are more than welcome to give them a little sunshine!

Q: Aside from sending money, what are other ways that I can help?

A: We always appreciate your prayers and positive thoughts but you can also donate any blood type in Hazel's name at Children's Hospital Los Angeles Blood Donation.  Many kids in treatment need blood, so if you are not local, please consider donating blood at your local children's hospital and help save a life!

     Thank you all for your continued support and prayers and if there is anything else you would like to know, please feel free to leave us a message on Hazel's Facebook page Hope For Hazel

Last Day of Chemo and a Re-Birthday!

     First, let me start off by saying that our little Hazelnut is still feeling pretty well!  I am so thankful that God is blessing her with more good days than I could have hoped for.  She is starting to become disinterested in food, so I know the nausea is beginning to settle in, so I am prepared for other side effects to soon follow; but please pray that it continues to stay very minimal.  Also, I realized I never updated about eh possibility of a second surgery.  Dr. Tran spoke to our surgeon Dr. Bliss, and he said that he doesn't foresee needing to do another surgery right now and that we will wait until her post-transplant scans to see where we are.  I pray we don't have to open her little body every again.   
     On October 8th Hazel received her VERY LAST infusion of chemo!  It brekas my heart that we have to celebrate something like this, but six months ago I felt like this day would never come and now it has not only come but it has gone!  We (prayerfully) never have to knowingly pump poison into my baby girl's body again and she will never have to deal with the crappy side effects after these next few weeks are over.  Praise God we made it!

 



     On October 9th, Hazel received her infusion of life saving Stem Cells. We have been working up to this for so long, and although it was a beautiful moment it was quite uneventful actually!  There had to be about 6 medical professionals in the room, and once the cells were hung it took about 10 minutes total.  They have to take her vital signs every five minutes, which she did not care for at all(!) and she even tasted a bad flavor in her mouth; which I was told was from the preservative the cells are kept in.  It gave off an aroma of creamed corn to me, but others say they smell something different or nothing at all.  It is hard for my mind to grasp that she just went through a life-saving procedure because she is still feeling so well and it does not appear from the outside that her life needs saving.  But I make sure to remind myself any time that I can that her body would not recover from the Chemo she just received and it is because of her stem cells regrowth that she will be able to become strong once again.  She will have to be weakened before she gets stronger, so please pray for us through these next days, as they will likely be our toughest.

Her stem cells!

   

Stem Cell Transplant

     Hazel and I just got settled in our new home for the next 4-6 weeks in the Transplant Unit here at CHLA. Saying goodbye this morning was so rough and there have been many tears shed these last few days by each and every one of us. Please pray for God to sustain our little family during this time of struggle and separation. We are all on edge and just want this all to be over. But we will take one day at a time and the Lord will get us through this just like He did with the 6 grueling rounds of Chemo and several hospital stays.

     Now here's what the next few weeks will look like:

- Today is day -7 and we work up to day 0 which is the day of the transplant and will be considered her re-birthday. This is because the chemo will utterly destroy her bone marrow and immune system. If she was not to receive her own stem cells back, this process would kill her. But, thankfully, she will be rescued with her stem cells and she will regrow brand new bone marrow to build a new immune system like that of a newborn baby (hence the rebirth).

- On days -7 to -1 she will receive an anti-seizure medication to prevent the seizures that can be a side effect from the high dose chemo.

- Starting sometime in the early hours of tomorrow morning she will begin her infusion of the first high dose chemo, Busulfan. This will be for 4 days to day -3.

- On day -2 she will continue her anti-seizure medication but will get a break from chemo

- On day -1 she will receive the second high dose chemo drug, Melphalan.

- On day 0 she will get her stem cells! This will take a grand total of 15 life saving minutes, so probably quite anti-climactic!

- From here she will receive her daily GCSF injection to help boost her blood counts and we begin the waiting game. It will take several weeks for her counts to recover and it may be very grueling.

- The week after chemo will probably be the roughest due to the painful side effects from these drugs, so please pray for as little side effects as possible!!

- In addition to the usual side effects like fever, low blood counts, mouth sores and the like; ther is a a laundry list of potential temporary and permanent risks that include: 5% chance of a fatality, Veno-occlusive disease of the liver (most serious), bladder irritation/bleeding, kidney damage, other organ damage, decrease in fertility, a risk of developing another cancer and much more.

     These risks are not common but do occur, so we must be vigilant in her care and in prayer! In addition, we will be kept in isolation with limited/no visitors to prevent any infection or complications that could be life threatening, so this may be a long couple of weeks with a 2 year old!

     Despite our fears and anxieties about this reality we are facing, we hold fast to the truth that we have a Mighty Father who holds our little Hazelnut in the palm of His hand. We know He will comfort is, protect us, sustain us, love us and guide us. And as is its says is Hebrews 4:14-16 (a verse that has come across my path many times this last week) "Therefore, since we have a great high priest who has passed through the heavens, Jesus the Son of God, let us hold fast our confession. For we do not have a high priest who cannot sympathize with our weaknesses, but One who has been tempted in all things as we are, yet without sin. Therefore let us draw near with confidence to the throne of grace, so that we may receive mercy and find grace to help in time of need." Please pray for miracles to happen so His glory may shine and that we rely on Him for his grace in our time of need! Here is a picture of Hazel with Dr Tran for her last health check before being admitted: