Dr. Browning told us early on that there would be bumps in the road, delays, unexpected circumstances. Maybe I was being naive when I thought there was a possibility that we would be the exception. I mean, there are literally hundreds of people praying for Eli. I am integrating natural compliments to his treatment. The change in his energy level has been amazing. Chris and I often catch each other’s eye in amazement when we see Eli running, jumping, skipping, and just being his crazy little self. No more fever. He is happy again. His belligerent demeanor is not the norm anymore. He doesn’t need to be 100% on my lap or in my arms. He is laughing again. He is eating again. Surely things are working. We are cautiously optimistic. And yet, afraid to be too confident.
We did not get the news we were hoping for this week. I took Eli to his clinic visit on Tuesday and Dr. Browning made a point to tell me first, that she is really pleased with his weight gain. Up until 2 weeks ago, Eli was losing weight. He (and all of our kids) normally hover around the 4th percentile for weight. Our pediatrician watches that but has not been overly concerned since she recognizes Chris & I are not big people. But the drop in his weight was concerning. The good news is that he is basically back to where he started prior to diagnosis, which is wonderful.
Lab results indicated his counts were low. He needed another blood transfusion. This news meant our clinic visit was about to turn into an all-day affair. We left the house at 8:00 am and would not return until 4:00 pm. Luckily, my dad swung by the day hospital with lunch since I came totally unprepared for us to stay. (And once again, THANK YOU to all the generous people who regularly donate blood. I hear there is a blood shortage in the Milwaukee area. We are thankful that Eli was able to receive the blood he needs.)
Dr. Browning also delivered the news that Eli’s bone marrow biopsy did not come back clear enough to do the stem cell collection next week. As she said this, my heart started beating faster. And my stomach felt mildly nauseous. It must have shown in my face, because she immediately reassured me that at this time, she is not worried. This happens. Every child is different. Eli really only experienced one round of chemo before his biopsy, and perhaps we were just too early. His initial biopsy prior to chemo showed 100% bone marrow involvement. This last biopsy showed 60% involvement. Improvement. (Disclaimer – I was taken aback with this news and was not fully able to process all the information she was giving me as we went back and forth between both biopsy reports. The above statistics are for his right leg. I didn’t write anything down for his left leg. I also was confused about some of the acronyms in the report for other things that were tested. i.e. clusters and other terminology. So, it is entirely possible that we will follow this up someday and let you know that what I’ve just written is incorrect.)
Through the disappointment, this is the message my brain received that day and the one I am choosing to focus on: THERE HAS BEEN IMPROVEMENT. CHEMO IS WORKING.
Dr. Browning reiterated what she has told us in previous meetings: the goal of induction chemo is to clear the bone marrow. So I continue to pray that Eli’s bone marrow will be cleared of cancer before the end of induction chemo and that every cell in Eli’s body is restored to perfect health.
I’m still a little baffled though. Eli is acting like his old pre-cancer self. But he still has 60% disease in his bone marrow. He must have been hurting so very badly prior to this. And if he acting so normally with still having so much disease in his body, he is an incredibly tough kid. I look at him in awe and can’t believe that I have this incredible privilege and honor of being his mommy.
So…this news changes the plan. A bump in the road.
The original plan was for Eli to have a stem cell collection on Tuesday, May 31. In order to prepare for this, he would need to receive daily injections of neupogen (to stimulate white cell growth) for 9-12 days. Last round, Eli received neulasta, which does the same thing, but is a one-time shot. Prior to stem cell collection, neupogen (daily injection) is the preferred drug as there is better control the rise in counts, helping predict which day is optimal for stem cell collection. As Chris has mentioned, “pokes” are truly a major source of anxiety for Eli. Watching my child receive shots in the stomach is awful in and of itself, but on top of that, it brings me right back to my days of the good ole neulasta shot the day after my A/C (red devil) chemo concoction. When our home care nurse asked if she could teach me to do the shots, my answer was a flat out “no.” Luckily, our team of doctors is sensitive to Ei’s anxiety and also my triggers. The nurse practitioner for the bone marrow collection team suggested we consider placing a small catheter (called insuflon) in the back of Eli’s arm. She said they could even do it while he was knocked out for the bone marrow biopsy so he wouldn’t even know about the poke. We thought that sounded like a good plan and went ahead with that.
Our home medical supplier delivered both neulasta and neupogen last week. This is literally thousands of dollars worth of medication sitting in our refrigerator. They delivered both since we needed to begin the shots on Monday and we were waiting for the results of the bone marrow biopsy to know which one to start – neupogen to prepare for the collection or neulasta if there would be no collection. Dr. Browning told us to go ahead and begin with neupogen in hopes that we would be proceeding with the collection. Our home nurse came out on Monday and taught Chris how to administer the neupogen through the insuflon. He was a good student and a quick learner. He gave Eli the neupogen on both Monday and Tuesday.
Once we discovered that the stem cell collection would not be happening next week, Dr. Browning decided to put the neupogen on hold. She did not see any reason to put Eli through all those shots, especially since we’d have to do it again in a few weeks. The insuflon was removed (it can only be in for a week at a time.) The home health care nurse returned today and taught Chris how to give Eli the neulasta shot to Eli in the tummy. One and done. For now. He will receive this shot again after rounds 4 & 5.
Now what? Eli will have his 3rd round of chemo in 11 days. I have been forewarned by Dr. Browning that the first two rounds he just completed are easier (I believe she actually said “less pukey.”) So I am already bracing myself for Eli to experience some severe nausea with round 3. We will be in-patient for 4 days. They will keep him a 5th day if his stomach is not handling things well.
We go back to the clinic on Tuesday for his weekly lab check and dressing change. We will also be meeting with the audiology therapist for a baseline hearing screen. The drugs Eli will receive for the 3rd round are known to cause hearing damage. Most kids with neuroblastoma have some degree of hearing loss and wear hearing aides.
Sometime during or just after his 3rd round, we will repeat the bone marrow biopsy. Hopefully the bone marrow is clear enough that we can proceed with the 9-12 days of neupogen injections and then the collection. To be perfectly honest, I am bummed and annoyed. It is really hard to keep putting him under sedation (which also means withholding food and liquid) for these procedures. I’m over it. It sucks. Plus, it means they have to continually stick a big huge needle into his hips and pull out some of his bone marrow and also a tiny bit of his bone. He is sore for a couple days after that. He hates the band-aides he has after. (Eli might be in the minority as a child who hates band-aides. Our other kids invented owies just to have band-aides.)
I guess that’s that. A bump in the road. I hope the road ahead is smoother. Could we maybe be the lucky ones with minimal bumps? Minimal side effects? Could that be part of the miracle we are praying for?
The word TRUST keeps popping up in my Facebook newsfeed and devotionals. I am trying hard not to worry about the future. I am noticing the good things, the positive things, and the improvements in Eli. I am thanking God a lot. I am trying hard not to let my imagination run wild with possibilities that I can not bear to think about. I am praying and breathing deeply and trying my best to live in the moment of each today with gratitude. But I am human and I fail often. So, I return over and over to a poem I received from my mom during my cancer treatment that is posted on my fridge. It has become one of my favorite prayers.
Be at Peace (by Saint Francis de Sales)
Do not look forward in fear
to the changes in life;
rather, look to them with full hope;
that as they arise, God,
Whose very own you are,
will lead you safely through all things;
and when you cannot stand it,
God will carry you in His Arms.
Do not fear what may happen tomorrow;
the same understanding Father
who cares for you today
will take care of you then and every day.
He will either shield you from suffering
or will give you unfailing strength to bear it.
Be at peace, and put aside all
anxious thoughts and imaginations.”