Ups and Downs :: First Week Post-Transplant

Day +1. A top hat for Jade before she had
to use it daily for its intended purpose.

Mooooom! 
There's nothing that will end the semi-sleep state of a watchful parent in a hospital more abruptly than your child's voice calling your name.
"I'm right here, Jade."
Before I can get my litany of questions out that usually follow when she calls out in the middle of the night -- Do you need to use the potty? Are you warm? Does anything hurt? Are you thirsty? Did you have a bad dream? -- Jade says,  I love you, and nods off to sleep again. 

Thursday, Day +7, seven days after Jade's cord blood transplant, and by all accounts from the team, Jade is doing fantastically for where she is in transplant recovery. It will be at least another two weeks before we see signs of her new cells making their home in her body, growing, and multiplying.

Jade enjoyed four days of post-transplant, symptom-free bliss -- taking in July 4th fireworks with a view of the Washington Monument from her room, celebrating big brother's birthday with a song and lollipops in lieu of cake and candles, dancing her heart out, and attempting to best us all on Wipe Out for the Wii -- imparting Wonder Jade wisdom when a nurse asked if she was winning and replying, It's not about winning.
 

Then, the myriad symptoms that they warn you about when your child is undergoing cancer treatment began to surface.  Mouth sores. Nausea and vomiting. High blood pressure. Fever. Low blood counts. Fatigue. Loss of appetite.

The mouth sores came first.  Jade woke up on Day +4 and said that something was poking out in her mouth. A quick glance inside and I immediately saw what she was talking about. The medicines she is taking is only to lessen the severity of the sores that appear in the mouth and all along the digestive tract as a result of the high-dose chemotherapy.  Magic mouthwash was ordered for some relief.

The high blood pressures came next.  They are an expected effect of one of the immunosuppressant medicines that Jade is on.  So, she was prescribed another medicine to help bring her blood pressure down. 

By the end of Day +5, Jade's energy level was really suffering. She rested for the majority of the day because of the low-grade fever, we thought.  But after her temperature came down, she still wasn't interested in dancing. Or walking. Or eating. Or doing much of anything. A blood count showed low hemoglobin levels (7.2), so she received a transfusion that evening.

Even after the transfusion, and a nice jump in her hemoglobin levels, Jade slept in until noon on Day +6 and took a long nap in the late afternoon. She even told a volunteer after only a few minutes of playing with her doll house that she was finished! Jade typically requests that a volunteer come play with her daily and when they arrive she charms them into staying for almost an hour.

Jade's appetite really tanked as well over the past few days, with her eating only a few bites or spoonfuls for entire days.  We are attributing that to the ongoing nausea and the sores that are in her mouth and likely lining her GI tract.  Nutrition concerns and Jade having enough energy to recover from transplant prompted three traumatic attempts to place a nasogastric feeding tube (NG tube). The first two attempts to place the NG tube took place shortly after noon on Day +6 and were nothing short of disastrous. 

Day +6. Not happy about this NG tube business.

Despite the pre-education and play with child life, despite the reassurance of mommy's hug, despite pre-medication, the first two attempts ended with Jade and Mommy soaked in vomit and tears. The next attempt came about 9 hours later. While Jade was on board, in theory anyway. The idea of not having to taste any oral medicines, which would be able to be given through the NG tube, really appealed to her. Her body, however, was not. Her gag reflex kicked in again. Vomit once again covered everything, though we were better prepared this time with gowns, towels, etc. Surprisingly, the nurse was able to insert the majority of the NG tube and secure it... Jade however continued to gag and cough. On exam, the nurse couldn't verify placement in the stomach. So after a seemingly tense exchange between X-ray and the night doc about Jade requiring a bedside x-ray instead of being wheeled thru the hospital to Radiology, Jade had an x-ray done in her room that showed the NG tube placement was indeed unsuccessful. The nurse suspected the tube had coiled around itself in Jade's esophagus. The tube was removed quickly and without incident.

Day +7. Tea anyone?

Thankfully, her energy and appetite rebounded some on Day +7.  After winning three rounds of Hospital Bingo, dialing in to Clown TV and telling two jokes, Jade even called in a nurse for an abbreviated dance party. Her stamina is not what it was.  She settled down for a tea party, with big brother serving up delicious cups of tea with "dots of milk." And she is, in fact, working on her second hot dog of the day as I type this post. Not my first choice for food selection, but she's eating!
  
As always, thank you for your amazing support and for continuing to check in on Jade and to keep her in your prayers.

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