Since my last post here, a lot has happened. In November, Hazel was hospitalized with extreme amounts of pain, and several difficult side effects to what we determined to be a tumor flare. We were all just trying to hold on to get Hazel on a new clinical trial that we all believed had a very good chance at curing our little girl.
Between our discharge, and the day before Christmas Eve, we thought we had it. Hazel was making such good progress, that I was even beginning to be filled with a hope once lost. I mean, she was in school everyday, eating like a champ, bursting with energy and gaining strength like you wouldn't believe (she crossed the monkey bars on her own for the first time!). It was a glorious month!
Then on Christmas Eve, Hazel's back pain had returned as if someone just flipped a switch from "OFF" to "ON". And it progressed so quickly. I was terrified. But in true Hazelnut fashion, she was determined to be home for Christmas. Like any 6 year old, she had been counting down the days, not just for opening presents on Christmas morning, but to a day filled with spending time with family, since she missed out on so much the month before while being in the hospital. I spoke to her doctor, who realized how important this holiday could be for our family, and she said that we could give her some pain medication to hold her over until morning, but to come in as soon as we were done. She also said that if the pain got worse, or she had any other symptoms, to come in immediately.
So I said to Hazel, "Honey, I will do whatever you want. If you want to stay here, and fight through the pain, I will go wherever I need to, to get you the pain medication you need. But the second you want to go to the hospital, you tell me." So she fought through the pain, barely being able to open her presents, but happy to visit with everyone. But by 3:00pm Christmas Day, we both agreed that it was time to go to the hospital.
Considering her experience in November, her doctors opted for a direct admission this time, rather than our usual ER visit, then admission. Continuous IV pain medication was started immediately, because at that point, my poor sweet girl could scarcely even move. Scans that were meant to be done after New Years, were pushed up, and even more intricate ones were ordered.
As each day in that first week here passed, I felt like I was living my very own version of the movie "Groundhog Day". It was like we were re-living the same hospital stay we had in November. Hazel experienced the same symptoms, and the same protocol was initiated. Then, other complications began to come up, just as they had in November, and I was scared senseless that we were going to experience the same hell that we did then. Thankfully, everyone was aware of what happened last time, and we all worked very hard to try and keep ahead of everything.
It took quite a few days to get a handle on managing Hazel's pain, but we certainly got to it more quickly than last time, so I was thankful. But the same fears I had two months ago, were eating away at me once again. I thought for sure, this time, the pain meant Hazel's cancer had progressed.
First, her CT results came in, and my fears were realized when the doctors told us that there has been progression in her tumors. But he tried to assure us, that so far, it had appeared to be small, and slow growing progression. But it looked as though this new progression was now threatening Hazel's spinal canal at an alarming rate, and they were concerned that if we did not stop it immediately, that the tumor growth could cause permanent neurological damage. So an MRI was ordered for that very night.
The MRI came back with a very clear picture of progress of her tumors, and the one near her spine was now wrapping itself around the spine, trying desperately to break in, and even compressing several nerves between her T-11 and T-12 vertebrates. Thankfully, however, it has not yet invaded the canal (funny how bad news can become good news in this messed up world of childhood cancer), and she is currently not in danger of permanent damage. This gave us a chance to make a treatment plan, as it wasn't as emergent as we thought it would be.
She also had the painful bone marrow biopsies performed as well, which thankfully came back clear. But this left her hips sore for many days.
Hazel's PET/CT came back, affirming the progression, and also lighting up very bright in her tumors, indicating that it is still very active disease. It also showed that because of their placement near her diaphragm and lungs, she was developing a pleural effusion (fluid build up around the lungs), just as she did in November.
Gosh, these tumors are greedy little suckers, aren't they?!
We tried to stay ahead of it, but it progressed rapidly, and before we knew it, her entire left lung was affected, and she needed to have around the clock oxygen for the better part of a day. So, instead of just watching it, and draining it if need be, our little Hazelnut had to have a chest tube placed, in addition to everything else she was going through. To date, it has drained nearly 700ml of fluid!
After much discussion and deliberation, Hazel's oncologist and we decided on a treatment plan. Radiation was to be started as soon as possible, to try and stop the tumor around her spine in its tracks, and chemo was to be started immediately. Which chemo, though was the question. We had two choices, one was to go back to what worked for her last year (two types of chemo + the ALK inhibitor) and would be tough but tolerable on her body, or a protocol called ICE. ICE consists of three different chemotherapies (Ifosfamide, Carboplatin and Etoposide), which are all very strong and very brutal drugs. They are given inpatient, and you usually stay until you recover, because they need to watch your side effects very closely. I have known a few children who have done the protocol, and it was no picnic, so the thought of doing this scared me. But I also want this cancer gone, once and for all, and maybe that's what it would take.
I wish the answer was easy. I wish, like many well-meaning people have messaged me, that cannabis, ketogenic diets, carrot juice, vitamin therapy, essential oils, etc. would be the cure to my daughter's cancer. Believe me, we have tried these things, with the hope for a cure! But her cancer keeps coming back. It keeps getting smarter, and stronger, and it has figured out ways to get around every single thing we have thrown at it. The possibility that this beast can take our daughter is becoming more real with every second that passes, and it rips my heart out that we haven't found the thing to save her yet.
However, even with the knowledge that these protocols may not be the answer for Hazel, we do have hope that they can give us more time to try and find it. Her doctor and I both believe that the right protocol for now, is what got Hazel to remission last year. We both felt that if we tried the ICE protocol, and it hit Hazel to hard and caused irreversible side effects, it would not be fair to Hazel and we would never forgive ourselves for not trying the "easier" protocol first. So she started that regimen last week, and completed the 5 day course already. She seems to be tolerating pretty well for now, but her counts have dropped to nothing, and she has already needed blood and platelet transfusions. Her platelet level got so low, that she started getting a bloody nose yesterday, and we could not stop it for well over an hour. So much blood ended up in her stomach, that she coughed up clots three separate times.
Hazel also completes her 5 day course of radiation tomorrow. The radiologist has said that he has already seen a decrease in the swelling of her tumors, which has been reaffirmed to us these past couple of days, as Hazel's pain seems to be getting better. So much better, in fact, that she is off the continuous pain medications and on an oral nerve pain medication only. She felt good enough to even have an impromptu dance party with her nurses, complete with a disco ball.
Despite the struggles with my faith lately, I can only believe that it has been God and your prayers that has sustained our family. My husband Aaron has had to act like a single Dad since Christmas, taking care of four children, a home and a job. He even has made time to come and visit us when he can. My other children are worried for their sister, and miss us terribly. They now have to go back to school this week, as if life were normal. Yet, somehow, they keep going. We have had to ask so much of Hazel these past weeks, and it has been hard on her. But God continues to lift her up and helping her push through. On the days where she has cried out, "I can't do this! I wish I never had cancer! This is the worst thing to ever happen to me!", she somehow still manages to gather enough courage to do what needs to be done. Logically, a six year old girl would not usually be able to face these kinds of things. Most of the time, they cannot even face the monsters that they believe are hiding under their beds. Yet Hazel fights this very real, and very scary monster every single day, and it is all she has ever known. So, for me, that only points to a divine strength that must have been gifted to her.
Yes, I still struggle with the thoughts of "How could God allow something like this?" or "Why would God let these children suffer?". But I also know, that cancer is not FROM HIM. It is a product of living in a broken world. But it is hard still to understand. Bitterness and anger are comfortable when walking this path, and I am trying so desperately to see the light. So when I see Hazel, and my four other children, being so brave and strong through all of this, it helps me to see that light, even if only for a moment.
If you are still with me here, at the end of this lengthy post, thank you. I ask you now to keep praying. Pray for the good kind of progress. We want to see something finally nail this thing, and we want to go home.