You know those scenes in movies where some horrid murderer is straining as they press the pillow over the person’s face and all you can see are legs and torso tossing and arms flailing trying to fight back, trying to breathe – that absolute fight to live? That’s what it’s like to put the mask on Allistaire’s face and keep it there. Her cries are guttural and she tenses her body and flails her arms. She writhes. She is angry and terrified. She is fighting to live but her fight may actually result in her death. As I hold the mask down and oscillate from trying to be gentle and comforting to raging angry myself, I think of algebra. I think about how if A = B and B = C, then A = C, except in this case it’s more like A = R. If I cannot keep this mask on Allistaire, she will die of cancer. Sounds extreme but if Allistaire does not get this Ribavirin and thus get rid of the RSV quickly, her transplant will be delayed and if it is delayed she would have to have more chemo which could destroy her organs or could not work and the cancer could grow. If she does not have this transplant Allistaire will die. A = R. Extreme, I know. So, as we both feel the sweat on our brow and our hearts beat fast and we tussle under this plastic tent, I am also keenly aware that Allistaire’s possible death wears her own face. In these hours in the darkened room, with vents and hoses and tubes, Allistaire’s foe wears her own face. What makes this all together worse is that as I try to fight off this illness that could be the death of my beloved, I look into her eyes and see her face. It feels like I am fighting her, because I am even though I’m really fighting the foe that lurks inside, behind the face. We lay opposing one another. She behind the crinkly clear plastic, eyes black and wide in the dark and locked to mine, and on she screams as I lay outside the plastic, my arm inside firmly holding the mask in place. It feels like I am in opposition with the one upon whose side I so solidly stand. I want to be holding her close, pushing back the scary stuff instead of locked in this fight with her.
I thought yesterday morning from 6-8am was the worst two hours I had ever had with Allistaire, until 2-4pm yesterday. I fought Allistaire for two solid hours, with out 20 seconds of relief, despite doubling the dose of Ativan to try to get her more sedated. At the end of the two ours I fled the room, my face blotchy red and eyes puffed from hard crying. My unbuckled sandles slapped the floors as I ran out of the Unit. I went to the nearest bathroom and threw my shoes against the wall and clenched my fists and screamed a silent tantrum.
I wrote the above last Saturday. It was an awful day and I haven’t had a chance to write since then. Ribavirin is an absolute time sucker, consuming 9 hours of every day plus all the prep time and repeated conversations with Respiratory Therapists and their supervisors to get all the kinks worked out. And it’s still going. Today marks the 7th day of Ribavirin with a total of 72 hours so far. But I am elated to report that the last several days of Ribavirin have been literally worlds different from a week ago. On that horrid Saturday afternoon I did not know how I could possibly keep going. I would do anything under the sun for Allistaire but that I did not know if I could really do. There had to be a better way and clearly the doubled dose of Ativan did not work. Turns out Allistaire had what the docs refer to as a “paradoxical,” reaction. She reacted in the polar opposite way from how the drug should impact her. So we decided on a different approach. We dropped the Ativan altogether and upped the Benadryl to the maximum possible dose. WOW – what a difference! It worked! She slept. She didn’t fight. She didn’t move all over the place and make the mask come off incessantly! It felt like a miracle straight down into my lap from heaven. So for those of you, of which I know there are so, so many, thanks for praying even when you had silence from my end! These days I actually ask Allistaire to sit up in bed and help me fit the mask on her face so that it is comfy. She says, “okay mommy,” and up she sits. I put the mask on her face and she adjusts it so it feels right and back she goes under the tent and curls up on her right side, often with doggie propped under her head as a pillow. I still lay beside her for each two-hour dose but she actually adjusts the mask herself periodically as she sleeps to make sure it is on right. At the most she cries a few minutes at the beginning of the dose because she doesn’t like the smell at first and sometimes toward the last 15 minutes or so she is weary of the strap around her head and the pressure on her nose. What an utter relief! Especially since the infectious disease doc says there may be more Ribavirin in her future.
It has been an exceptionally busy week. On Monday, in addition to all the Ribavirin, we had four hours of red blood and 2 hours of platelets, ethanol locks, antibiotics, bath, etc. The nurse and I actually drew a diagram of her two lines on the white board and plotted out a schedule to try to get everything in and out of Allistaire in the hours we had to work with. All the necessary meds and activities of the day can really pile up and Allistaire is still not even a complex patient. Our friend Abi who also has been fighting AML, had at one point after her transplant far more meds that had to go into her body than could be accomplished with 2 lines from her Hickman. She actually had 8 additional pic lines and had so much hanging off of her body she couldn’t wear clothes. We are nowhere near that but everything still requires a fair amount of planning and coordination between all of the folks that come together to provide Allistaire’s medical care. I am often in awe of the number of people who work together to keep Allistaire’s precarious life going. Here are the people I can think of off the top of my head who have direct impact: Hem/Onc doctors which include an attending doc, a fellow, at least one resident, one or two pharmacists, the nutritionist, the current assigned nurse and sometimes a transition nurse. Then we also work with quite a number of respiratory therapists, the infectious disease attending doc, the big-wig infectious disease doc Jan England, the ID resident and fellow, several different custodial folks who clean the room and empty the ridiculous amount of trash and laundry our life produces, Mohammed who cleans the hallway floors, Gina who takes lunch and dinner orders and all the folks who prepare and transport food, Ione who brings snacks each evening, loads of CNAs, nurse practitioners who do the procedures like bone marrow aspirates, transport nurses who take who take us from place to place in the hospital, child-life specialist Julie, Ashley the social worker, Michelle who provides me with support from the Palliative care team, pathologists and swarms of lab techs and pharmacists who actually put together all the meds and chemo and Ribavirin – and of course, behind it all, Dr. Jessica Pollard who is primarily responsible for the big view and coordinating options and steps forward. Just a whole boat load of people!
Monday afternoon I received a call from the downtown SCCA (Seattle Cancer Care Alliance) to set up a time for out Bone Marrow consult. JoMarie, Sten’s mom, was already planning on coming for the week and so we knew she could watch Allistaire and do the afternoon Ribavirin while I attended the meeting. We decided that it would be best for Sten to be present for this meeting so he and his mom flew in early on Wednesday morning and Sten and I spent several hours at the SCCA. It was a good meeting overall, but one that will require an entire separate post at some point. Then Thursday morning in rounds, Dr. Fong, our attending doc, listened to Allistaire as he and about a million other people do every day, and heard “lots of cracks and wheezes.” A stat x-ray of her chest was ordered and came back later in the day showing nothing of concern. We are very, very thankful for that! On Tuesday night a nasal swab test was conducted which came back late Wednesday night and was discussed Thursday in rounds. The RSV test was “positive” but in such low quantities that it could not be measured and thus its reliability could not be counted upon – all that to mean, they consider it negative. However, with the new sounds in her chest, we continue on Ribavirin while we await results from a second nasal swab test conducted last night and delivered to the lab this morning. They are retesting RSV and for the rhino virus (common cold) which she also has, and for a number of other possible viruses. The results could come back late today but more likely we will have them by rounds tomorrow morning. The ID doc did say that both RSV and the rhino virus could be the cause of what they are hearing but they want to consider the possibly of other, additional viruses. One thing that we are very thankful about is that at this point, this bout of RSV should not delay Allistaire’s transplant further, assuming she were in remission. The transplant team has identified the amount of RSV they would allow to proceed to transplant. We have considered having regular and frequent nasal wash tests done with the real likelihood of more Ribavirin to keep her safe going into transplant. Of course once she actually has her transplant, she will be even more vulnerable if you can imagine it. Because she will be getting a cord blood transplant, this takes about 30 days for engraftment to occur. Engraftment is when the donor cells have taken up residence in the marrow and have actually begun to produce blood cells and thus create in her a new immune system. We have a very, very long road ahead of us and one that can literally change from day-to-day, sometimes from hour to hour.
In other news, Allistaire’s hair began to fall out a tiny bit last Saturday. By Sunday it was falling out in huge chunks and everything was coated in her hair as though we were living with a long-haired cat. Sunday night brought a really bad hair cut that sort of makes her like a concentration camp kid. There is a wide bald strip down the top middle which looks pretty funny. The best part is how excited Allistaire is about coloring on her head with markers once all of her hair has fallen out. She keeps asking about it and I tell her we have to wait until it’s all fallen out. She’s watched as we’ve drawn on Piper’s bald head a few times. Also, just in general she is in much better spirits. In retrospect, I believe the Ativan not only failed to sedate Allistaire, but had an overall effect of making her very angry and irritable. Since she has been off of Ativan she has been sweet and cheerful and even helping the nurses with vitals – she rarely yells at them anymore! She is pretty cute and just so much easier to deal with. She continues to take her “by mouth” meds really well and has gained a bit more weight and is up to 16.5 kg.
Today marks the 19th day of this round of chemo, the 32nd day of a zero ANC, the 16th day of no blasts, the 47th inpatient day and most sadly, the 3rd day that Shannon and her family face life without their beloved little boy, Jaxon. Jaxon, who also fought AML, passed away Tuesday morning. We are blessed to have the opportunity to fight. Jaxon was a little man who fought for life every single day of his young life, with his ever hopeful, determined mom, Shannon, constantly at his side. The first time I met Shannon, Jaxon in her arms, she said that Jaxon was here to make a difference. Jaxon had Down Syndrome and AML and number of other medical struggles, but he did indeed make a difference in the lives of many and to the advancement of science and pediatric cancer research as well. We grieve with Shannon and her family but also rejoice in the fullness and beauty of Jaxon’s life.
I read your blog with tears this a.m. The path you are walking is so rugged, I am so sorry for the past weeks. I do know that some medications work opposite of what they think, Bob, my husband has that problem with many of them reacting wrong. I am praising God that they figured that out and she is responding better now. Oh what a precious little one. Oh what a loving mommie she has, praying for added strength for you to be able to hang in there during such trying times. Hang onto the loving Father who is hanging onto you. He is faithful , He is walking with you through these rough days. Praying for all of you during these rough days.praying for your other little one being away from her mommie too. Oh, God engulf this family in your love,
Praying, praying. All who loved Jaxon our in our prayers.
Barf. I’m sorry to hear it took so long to figure out that Ativan was the culprit and not the helper it was intended to be. I’m so glad that you guys DID figure it out, and that Ribavarin has since been so much easier. What a small blessing that turns out to be so huge!
Her sad face with her short hair just broke my heart, but she’s dear no matter how many hairs are on that sweet head. I’ve never heard of coloring on a bald head with markers, but that sounds like a wonderful way to make something hard fun! Like signing a cast? I’d color all over that child. You’d look like the parent of a tattoo addict.
Little bit of love in the mail to you! Hope it gets there soon and blesses you both.
Love you all! Wish we were closer to hold all of you but we are praying lots!!!