Day 761/133

IMG_5459

We are settled into our new room on the fifth floor, the Pediatric Intensive Care Unit. It was scary to come here. But this is where we needed to be tonight, and after one of the longest days in recorded history, I feel like I can finally take a breath.

Benjamin and I got very little sleep last night. His fever, pain and oxygen levels kept rising and falling, and I was hypervigilant. I was also experiencing that strange pain down deep in my belly, in my womb. I kept staring at him. It was nearly morning when I finally drifted off. When Benji said he had to use the bathroom less than an hour later, I jumped up so fast I almost passed out. It was such a dumb thing to do. I’m a fainter by nature; I know better. I had to sit on the bathroom floor next to him and restore my own oxygen. He was actually rubbing my arm, making sure I was okay. Ridiculous. It was a valuable lesson–I cannot let things like that happen. I have to take care of the basics, eating, sleeping, not passing out. I have a job to do.

Benjamin’s bathroom episode showed me how serious his lung deficiency really is. He was away from his oxygen mask while he was in the bathroom, and by the time I got him back to bed, his color was way, way off, and he was cold. I wrapped him in extra blankets and put the mask back on him immediately.

The sunrise at shift change was vivid red, beautiful. I listened as the nurses gave report and watched the screens as they toggled through the numbers. Benjamin’s port cultures all remain negative, so his fevers aren’t being caused by detectable bacterial infection. More likely his fevers are simply a result of his leukemia. His white blood cell count rose last night, up over 9,000, showing us that his chemotherapy isn’t working–at least not yet. I felt nauseous. I went back to bed, and slept as well as I could for about three hours.

Benjamin’s lower oxygen saturations continued throughout the day. Yesterday, when he sat upright in the chair next to the bed, he didn’t need the mask. Today, he did. Yesterday, when he took his mask off, he would desaturate to 88% or so. Today, He dropped into the 70’s, and quickly. The mask was on around the clock, and the nurses kept increasing the amount of oxygen that he was getting–to three liters, then four, then five.

During morning rounds we discussed the oxygen situation, and that’s where the conversation about a transfer to the PICU began. 7 South is only equipped to support patients with oxygen to a certain degree. They decided to monitor Benjamin throughout the day and make the call based on his progress. They also told me that despite the addition of TPN, Benjamin’s albumen was still low, so they gave him a four hour transfusion of the stuff today. It definitely seemed to make him feel less thirsty. I’m hopeful his veins have what they need now to retain fluid.

I asked the team about next steps for Benjamin’s treatment. We needed a consensus on the best way to try and relieve his organs and ease the pressure on his lungs. We also needed to know what their thoughts were on tomorrow’s scheduled lumbar puncture. Dr. Wishnew told me they were meeting in the afternoon to discuss Benjamin’s care at length. Dr. Oshrine would be there as well. We would wait for their recommendations.

I got a laugh out of Benji this morning and it sounded like sunshine.

Banyan stayed home from school today. He slept away the last of his cold, then Michael brought him here to see his brother. I was so happy to see him. It was clear Benjamin was comforted by his presence. Benji’s fevers came and went throughout the day. His highest temperature was 104. He was so hot. Tylenol was effective. His pain increased throughout the day as well, causing fitful, arched sleep. The pain team increased the dose of Dilaudid he gets when he pushes his pain button, and also reduced the frequency with which he can get it. Also effective.

The anesthesiology team, our physicians, and our own instincts were all telling us the same thing: tomorrow’s lumbar puncture is not in Benjamin’s best interest. As much as we want to protect his central nervous system, we know how difficult it would be for him to recover from anesthesia with such diminished lung capacity. We will have to postpone the procedure for another day.

Our instincts also aligned with the recommendation of the oncology team to begin a round of steroids for Benjamin today. We understand that this prolongs any eligibility in the NIH trial, but right now, that isn’t our first priority. His lungs and his organs are. It was the second major decision that felt very right to us today. As difficult as this path is to walk, it is always easier when we know the right choices are being made.

Dr. Wishnew ordered one more chest x-ray to be sure we weren’t missing any fluid in Benjamin’s lungs. Benjamin was sitting up tall in the chair by the bed when the technician arrived. He was trying hard to take big, deep breaths. He tries so hard to do everything he’s supposed to do to be well. The x-ray showed no change from his last imaging, which was a relief.

Benjamin was sleeping when Kathy and Gana arrived this afternoon. We sat with them around Benjamin’s bed, whispering and watching him rest. He had just gotten his first dose of steroids, and they had yet to take effect. He was on quite a bit of oxygen then and his color was way off. Dr. Wishnew came back in to tell us that they decided to transfer Benji to the PICU. It was another decision my instincts corroborated. Benjamin was stable, and we had plenty of willing hands to help us load up our things and move downstairs. If an emergency had precipitated a move in the middle of the night, things would have been a lot more difficult.

Leaving 7 South was extremely painful. It cemented the reality of this situation and stripped me of the comfort of these women who have cared for us continuously since September. I did not want to leave them. Benjamin shared my sentiments. With every goodbye in the halls, I tried to put on a brave face. I hope we come back. This can’t be our last time here.

Our wonderful 7 South nurse walked us down to the 5th floor and gave our new nurse a full report. Benjamin was instantly suspicious of these strange surroundings. People were coming in at high speeds and in high volume. He is being constantly monitored now and has nodes stuck to his chest and belly. There is a big bright light over his bed, just in case. Our new nurse was mildly condescending and a little too perky for Benjamin right away, and he started to cry, just a little. He has handled so much without flinching. But this did not feel right to him. This was not 7 South.

Among all of the hustle and bustle of the transfer, Michael and I noticed that Benjamin was feeling better. He is still on constant oxygen, but he was maintaining his levels more easily, with fewer desaturations. His color had returned. He was alert and his pain was under control. He asked to watch television in the new room, and before we knew it, he’d been comfortably awake for nearly three hours.

The PICU team drew a set of labs when we arrived. They showed such a deviation from this morning’s numbers that they drew the labs again to recheck. The numbers were not a fluke. They explained why Benjamin was feeling better–his white cell count plummeted from over 9,000 to just 740. I don’t know if the dose of steroids alone was responsible or if the chemotherapy was showing some efficacy as well, and I don’t know how long it will last. But for tonight, it felt like a huge victory, and an enormous relief.

Michael and Banyan left for the evening, and Benjamin and I started finding our groove. There are no night ninja nurses here. The lights are turned on frequently and it’s noisy. The biggest change for me is that I really have to advocate for him in this new setting. These folks don’t know him yet, and they are accustomed to dealing with much less responsive kids, let alone opinionated ones. I have already said no thank you to a peripheral IV–their suggestion to fitting in all of his regularly scheduled medications with the blood products he’ll need tonight. Not necessary! Just premedicate for the Vancomycin while you give his antiemetics, run the Vanc, hang the platelets, give him a bolus of Dilaudid then run the blood over three hours. You’ll be just in time for round two of steroids and morning labs, all before shift change. Boom.

We were absolutely overwhelmed with love and prayers today. We are being lifted and carried by them. I appreciate every single ounce of energy for Benjamin and for us as well. I also recognize completely that so many others are hurting because Benjamin is in pain. He is not only a son, but a brother, a grandson, a great grandson, a cousin, a nephew, a friend, a neighbor, a classmate. I am grateful for everyone who loves him, and who sees what we see in our incredible little boy.

61 thoughts on “Day 761/133

  1. I dreamed of you and your family, and immediately come here to read this post upon waking. May his health, levels, saturations and pain all continue to improve and heal. All my love.

  2. Hoping the visit on the 5th floor is brief
    so you can get back to where you belong .
    Grateful for relief …….
    Love and Prayers
    I Believe………❤️

  3. May our prayers and love lift Benjamin and you all up on eagle’s wings. Keep up the fight you brave young man.

  4. Yesterday during our pastors meeting we stopped and took time to pray for you and Benji and the whole family. I am praying diligently and will be continuing that all day today. Very encouraged that has improved numbers. May God be with you today.

  5. Good morning sweet Ninja Mother Laura. Happy to hear that Benji feels a little better and praying it just gets better and better. Continuing to lift your entire family up in pray and Love and HOPE. So much love.

  6. So happy to see Banyan was able to come and to hear Benji had some improved numbers and moments of feeling better May this trend continue and get you back to 7 South.
    Here with you every step of the way xoxo

  7. Praying God will be with you all each and every day giving courage & strength. Love you all. Sending much much thoughts, Love and Prayers

  8. Ninja Mother Laura! Prayers for Benji. Prayers for you and your family.
    Prayers that healing continues and Benji continues to get stronger every day.

  9. Laura, I heard some encouraging words from your Mom today 🙂 Prayers, love, hope, strength and vigilance…..they are ALL working together!!!! YES!!!!

  10. Laura, all of you are constantly in my thoughts and prayers…hoping and praying that he continues to improve and the numbers continue to go down. I heard this morning that you were returned to 7S, I know it had to feel like returning home. and hopefully will lift Benji’s spirits even more. Love to All!!!!

  11. So glad to hear that you had some good news today. I will keep praying for more! Enjoy your day, Benji!

  12. so glad there was some very good news and Sweet, Brave Benji is feeling better (and also, so very glad that Banyan got to come see is brother…that was a huge boost to both!) Praying for continued good news and comfort for Benji…God Bless you…love that “BOOM”! You have the POWER WITHIN, my dear!

  13. ❤️Benji was the first thing on my mind when I woke up at 4 am. My prayers are continuous for our our little brave man.

  14. We are cheering you on from Sanford, FL!! Glad to read that you are beginning to feel a little better! Sending you and your family LOVE, LIGHT and PEACE as you tackle each and everyday!

  15. Mama bear knows best. Don’t worry, Benji will soon have those nurses eating out of his hand. Love to mama and cub.

  16. Great news on numbers! Praying for all four of you and for a miracle in B’s current health! You are such an amazing mother!!
    Xoxo,
    Lona

  17. What wonderful news that Benji felt some relief today and got to laugh! The best medicine of all (other than Mama hugs)! So grateful for the considered decisions and your confidence in them. This thoughtful trust holds you in light, and will continue to keep you exactly where you need and are meant to be. And huge props for Mayernal vigilance – amazing work by an amazing woman. Holding you all in the light of warmth and joy with security and certainty, and standing up straight with you! ❤❤❤

  18. i have so much hope and love for you all. (and also no little curiosity surrounding the results of that double-blind water taste test.)

  19. I do hope it’s a short visit on 5th, I want to see my buddy Benji! Saying extra prayers for your family and sending you a Big hug! Stay strong Laura but when you feel yourself weak feel all the love and support that is coming from everyone and let us give you more strength .

  20. PICU is scary the first time but the path you are on for transplant might mean it’s not the last. He just needs constant monitoring right now. We had to switch during transplant from our adult Cancer hospital to the local pediatric hospital for ICU because they don’t take kids in their ICU and it was easier to make the choice in a non-emergent way when 3 BP meds were not enough and they needed IV BP meds only administered in the PICU. It took them an hour to get ready, put on the ambulance with a team and a 5 min car ride away because of all those pumps like you write about. It wasn’t home (Hotel Roswell) but we knew only nurses who could deal with us could care for Stella. That was our only comfort in a place we couldn’t lay down to sleep in with Stella. You are doing everything right while on a path that does not have books available to follow like when they were little babies. Even us other Momcologists can’t fully help with each individual path these kids are on. It’s brutal. It’s heartbreaking. Especially difficult is keeping normalcy for the brother, Banyan the Strong. You are in my prayers and I still don’t sleep much if you ever want another Momcologist to talk to… you know those quiet moments in the middle of the night that are so difficult unless your child is sleeping in your arms? I still need to sleep next to Stella for peace or I’m awake, I’m always around if you need it.

  21. Thinking of you all and sending good cheer to fortify you. Laura, take care of yourself so you will have the strength to take care of Benji. X

  22. Laura and family, you are so very loved. I envision your entire family wrapped in a warm golden light tonight that fills you with all the love and strength people all across the country and world are sending your way.

    Love, love, and love,
    Angela

  23. I love you sweets! I love Benji! I love your whole family and am sending every… single… bit… of love, strength and goodness that I have your way! When you are tired remember all the hands that you have holding you up. As someone that I love so dearly has reminded me when I most needed to hear it, “I have all I need in this moment.”

  24. Laura, you are stronger than you know. Although we have never met face to face, I still remember your encouraging talks when we were the only two FFOM group leaders. Your family is so loved and you are all in our thoughts and prayers.

    “May the sun bring you new energy by day,
    May the moon softly restore you by night,
    May the rain wash away your worries,
    May the breeze blow new strength into your being.
    May you walk gently through the world and know it’s beauty all the days of your life.”
    -Apache Blessing-

  25. Sending love, strength and an over abundance of light as your continue on this journey.. I am sending positive vibes out into the universe for your family. From a Mama who knows a Mama that adores your family. <3

  26. holding your family in my heart. My the abundance of light and love traveling the miles bath you all in healing energy

  27. Sending you love and light from Austin Texas. Please take care of yourself, so you can rest peacefully when you get back to the 7th floor ❤️

  28. I don’t know you, but if you’re a friend of Angela’s that must mean you and your family has a beautiful soul. I wish you peace and healing on this journey

  29. I can’t imagine what your family and Benji are going through. Thank you for bravely facing each day and sharing your heart here. Jonathan and I are thinking of Benji and sending as many positive vibes for him into the world as we know how.

  30. Laura, I am thinking about you and Benji every.single.day…throughout the day…sending you love and prayers and strength!

  31. I am glad to hear he is doing better today you have been in my thoughts all day today. Sending lots of healing thoughts your way.

  32. Continuing to keep you all in my thoughts and prayers. You are so strong and such an amazing mother. Sending many hugs to your wonderful family!
    Xoxo

  33. Sending love from Colorado. Thank you for sharing your journey with the world. Benji sounds like an awesome kid. I will be thinking of you all and hoping you feel the love and support from everyone who reads your blog and holds you in their thoughts and prayers.

  34. THOUGHTS AND MANY PRAYERS TOYOU ALL THINK ABOUT YOU SO MANY TIMES.ONE WEEK AGO MY OLDEST SON PASSED AWAY .VERY SUDEN BENJ WE SEND CLEMATIS LOVE HANDSOME YOUNG MAN XXXXOOOO

  35. I thought of you both all night last night, and you were the first thing on my mind when I woke. Many hugs and much love.

  36. You are such a strong, brave, and loving mother and woman. I am sending you, Benjamin, and the entire family, all the positive energy, love, hope, strength, and happy thoughts that I can muster.

  37. I am a friend of Jennifer Vetere, and I am sending you all the positiveness I can possible send your way. Such a difficult thing to go through. But you and your family are loved. I wish you, Benjamin, and your entire family peace of mind and a happy ending to your battles.

  38. We have a few friends in common, and I just stopped by to say you’re doing such a great job, mama. Just from the little bit I’ve read here, I can see you’re an unshakable advocate for your boy. What good news that the numbers are moving in the right direction! Sending you all lots of love!

  39. Praying for you and your amazing family in Charlotte, NC.
    Thank you for sharing your family’s journey…I am moved by your strength and grace with every journal entry and am praying fiercely for God’s will to bring healing to your sweet boy, but also peace that transcends all understanding for all of you.❤️

  40. You have an amazing village here praying, sending love and energy to Benji and to your brave family! You are all so loved!

  41. You are so right 7south was comforting. Misha hated the fifth floor wanted to go back to her floor. You are also right now intubation. It rob you of precious time because they heavily sedated the kids. You are right it is a privilege to help our kids leave this world like we helped them come in
    You are so brave sharing this painful experience. Remember Benji’s life enriched your and everyone who knew him. Maybe god bless him and give you the strength for the struggle afterwards.

Leave a Reply

Your email address will not be published.