I had to apologize to Dr. Fong the other day. I told him I was sorry for my unenthusiastic response when he suggested the possibility of a feeding tube earlier last week. After having time to reflect, it came to me that feeding Allistaire and keeping her weight up has felt like a battle I have been fighting for a very long time. So far, I had been able to keep the enemy at bay. When Dr. Fong made it clear a feeding tube may be necessary soon, it felt like he just walked up and told me I had to admit defeat. This was my gut response but I thank God for working in my heart and mind and showing me that a feeding tube does not signal defeat, but rather the wisdom of applying a different strategy for a different situation. Thankfully, however, at this point we have the lovely option of TPN rather than a feeding tube. TPN stands for Total Parenteral Nutrition. I contains glucose, amino acids, vitamins and dietary minerals. It will be given to her intravenously and is for now the better option because of Allistaire’s mucositis in her digestive tract. She will also receive lipids which is essentially fats and looks like a bag of the purest white cream you can imagine. She can and will still eat, she just doesn’t have to rely on her limited food intake to satisfy her nutritional and caloric needs.
Another big change is that Allistaire is now on a morphine drip which continuously provides low levels of morphine in her body to help with the pain. I am so thankful for this solution to Allistaire’s pain. The last several nights I had repeated discussions with the nurses on how to best address Allistaire’s apparent pain. Yesterday afternoon it was finally decided that a morphine drip was the best course of action. Prior to this decision, as I was getting ready to leave the hospital yesterday, Allistaire was a complete wreck. She was unbelievable grumpy and at times crying hysterically. Nothing pleased her. Thankfully she has been in a better mood.
Only a slightly over a week ago, Allistaire was running around, riding bikes, eating, laughing, and playing. She was the Allistaire we know and love. She was done with chemo and didn’t have to be hooked up at all. She wandered the Unit unfettered and joyous. Since then she has had diarrhea, vomiting, fever and pain. She now requires IV fluids, antibiotics, morphine, TPN and lipids. The truth is, there has been some part of me, unconscious and unarticulated until now, that took pride in her seeming invincibility. I noted that Allistaire’s IV pole only required one pump and an occasional bag of innocent looking fluids. Her pole was sleek and fast, unlike the weighty, encumbered poles of other kids who were heavy laden with numerous pumps, innumerable lines, and bags of a variety of weird colored liquids. I want to believe Allistaire is okay, that she is normal. It’s funny how nearly five months of hospital life and living with the reality of cancer can make so much seem normal and ordinary. I have gotten used to Allistaire’s Hickman catheter tubes hanging out of her chest. Even when we go to change her dressing each week and I see the red crusty place where the line comes directly our of her skin, it no longer fazes me. Her bald little head with the sporadic white blond hairs is exactly the image of her I expect to see. I cannot imagine her head covered in blond curls. But this stuff is new, these bags and strange, mysterious drippings making their way into her. It is overt tangible evidence that there is damage done to her inside where I cannot see with my eyes. There is pain I cannot understand.
These are reminders that Allistaire is still in the battle against this wretched disease and the almost as wretched treatment that leaves her vulnerable and exposed to that which could end her life quicker than her cancer. My mom gets really sad about Allistaire having a hard time. I can only feel that we’ve had it so absurdly easy that surely it’s about time we have a taste of what life is for so many. Mom thinks of Allistaire in light of the little two-year olds out there – outside of the hospital, that are running around and playing on a sunny day. I see her only in contrast to the broken bodies constantly surrounding us which leads me over and over to gratitude. Over the weekend, though, I was using the bathroom in a restaurant and encountered a mom with her little 2 1/2-year-old girl. Seeing this wee girl with luxurious hair falling down from her head, it struck me that Allistaire’s life has taken a radical diversion from where it seems it should be. It is a strange sensation to both experience such acclimation to our realities and yet to fight it and defy it. Many people have commented to me in the months I’ve been here that they are surprised that I get dressed each day. There are a fair number of moms who walk the halls in their pajamas or the same clothes day after day. It seems that for them it is a comfort and a way to better focus their energies toward caring for their children. For me getting dressed each day is one of the ways that I silently declare that this place and this weird world of sickness is only a part of who we are and we will not be defined by it. It will not be our dominant identity. It also allows me to more effectively take my place as Allistaire’s guardian, as her voice. I interact with very intelligent professional people all day, and I want to command as much respect as I can that I might best be heard. On the other hand, I have laid down my need for the cozy towels of home, and instead now use the hospital towels, so rough it’s like free exfoliation.
My first response to morphine and TPN and all these added things is to resist and push back. To submit to the doctor’s recommendations feels like acknowledging my child’s strength and vitality has gaps of vulnerability like the one missing scale on the dragon’s armored body. At some core level, I want to maintain the myth in my mind that Allistaire is not like the other kids, she simply cannot go down the road some of them are on. She is too strong, she is too full of life, she is too loved. But she is linked to them, because like them, she fights the same enemy. The strongest bond is with those kids who also have AML. I find myself irresistibly drawn to them. There is an odd kinship. I am simultaneously drawn to them and repelled by them. I want to come close to them and know their story and share ours. There is also the part of me that fears being too connected. There is the fear that if they go down then somehow this means we too are more likely to fall. The image of a rope team climbing came to mind recently. It is as though Allistaire and the other kids are hooked into the same rope. When one falls down into the crevasse, it is like Allistaire is suddenly rushing with dizzying speed to the same dark hole. My gut oscillates back and forth between these two extremes – she is so like them that their futures are her future and she is so unlike them that she cannot possibly be taken down as they may be.
I acclimate and the bizarre becomes the norm. I deny the reality and unconsciously find ways to defy it. I submit to the wisdom of those who have spent years upon years studying to know the enemy because they have first studied to know the resplendent wonder of a body so unfathomably beautiful and wondrous in all its activities. This statement in the midst of the description of Multi-Dimensional Flow Cytometry on the Hematologics website struck me: “Normal development of hematopoietic tissues is a beautifully coordinated and choreographed genetic phenomenon that has been characterized by its cell surface antigen expression.” Over and over, giddiness wells up in me as I learn, bit by bit, about the crazy wonder that is our flesh. I want to yell out loud from the top of the hospital – “How great is our God?!!!!!”
So hard. I can hear the fatigue in your voice. Press on friend. Continual prayers for you and your sweet baby. Praying you feel God’s tight grip on you today.
You are so amazing and Praise God for holding onto you, I am praying every day — I am fighting health issues and feel ashamed after I read what you all are going through, I complain too much
I will continue to pray that God heals Allistaire, and you stay strong and do get dressed every day
I try to do that too, there are times I want to give it up but God has gotten me through a lot of hard days, nothing like you are battling, so all I have is I will promise to pray alot. grace regnier
Jai, this post hit me. I can’t tell you how often I’ve watched my girls run around in the sunshine and it has reminded me to pray for Allistaire who can’t do so at this moment. Please know I’m continuing to pray for her and for you as you fight the fight.
Oh Jai, I know some of these struggles. But many I haven’t experienced. You have so much courage, I know it’s from the Lord! But you have to choose every day to take hold of that hope and not sink into the doubt. I know. Feeding tube or not, you are a fighter and you’re not going to give up that fight. Allistaire is a mighty little warrior too! From one tubie mom to a potential… don’t be afraid! It really was scary until we did it and then it was a HUGE relief. For Jaron, it is permanent and I felt like I had to mourn the fact that he will probably never eat by mouth on this earth. That’s sad. But it has saved his life more times than I can count and I will forever be grateful for the time with him that this little tube has earned for us, by God’s grace. It sounds like the TPN is a good alternative for now, but just know that a tube is not admitting defeat, it’s taking up every possible weapon in this fight for your precious one’s life! And that, my friend, is COURAGE!!! I love you! My favorite excerpts from Joshua 1, “I will never leave you nor forsake you. Be strong and courageous… Be strong and very courageous… Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go… Only be strong and COURAGEOUS!”
Praying for rejuvenation for you both, Jai.
praying praying praying praying praying! Psalm 103… 🙂