Update…update…update…

Hi all,

This is Judy again. It’s been a challenging few days over here, but we want to make sure to keep everyone apprised of our comings and goings.

You can see the schedule of Jessie’ chemo days in the pic below. A nomenclature to highlight here:

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Rabbit anti-thyomyocyte globulin (rATG)  references an antibody derived from antibodies that do indeed come from…rabbits. It’s used against human T cells (another part of the SCT we want depleted for transplantation).

Here we go:

September 19th TO the 21st, 2016 (Day -4, -3 & -2) 

Thank God for the catheter is all I’m gonna say; it was heaven sent – although the collection bag had a cytotoxic skull and crossbones sticker on/ it. I guess that’s why they pay the RNs the big bucks.

 

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Hmmmmm …

While I suspect that the combination of anti-nausea drugs (olanzapine, Maxeran, Emend, and Zofran) have built up to make Jessie drowsy and lethargic, she didn’t sleep well during these days/nights. Between having vitals taken, pumps alarming, pressing the call bell for more anti-nausea meds, and then breathing deep until those kicked in, there wasn’t much quiet time. She was able to sit up in a chair, have a shower, and go for a few walks, but was still uncomfortable longing for her own bed. Her vitals stayed normal during all of this time. Yay!

As a nice surprise on Wednesday,  we got news that if all goes well during the transplant infusions and Jessie is feeling good, she can GO HOME after receiving her stem cells on Friday – travelling to and from the hospital on a daily basis to monitor  vitals, blood work, and medication, but spending the evening and night IN HER OWN BED!

September 22nd, 2016 (Day -1)

This was a rest day. Jess received one unit of blood. 

September 23rd, 2016 (Day 0!!!) “New birthday!”

Jess’ WBC is <0.1.

Four bags of her CD34 enriched (CIDP-free) stem cells were infused back to her over the course of about an hour. Each bag was thawed just prior to being hung and her vitals were done before and after each bag. This was a very big hour in our lives and one we have waited and hoped for for a long time. 

Soon after the infusion Jess started with some stomach pain. This and heartburn would get progressively worse as the afternoon and evening wore on. 

By 5:30 pm-ish we were on our way home! They warned us that the preservative that the stem cells were in could cause her to smell like cream corn because it is excreted through the lungs. And, DID she smell like cream corn … windows down in the car on the way home … cream corn smell.

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One of Jess’ four bags of stem cells (thawed and ready to transplant) 🙂

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Jocelyn, a GREAT nurse and teacher. She’s as excited about Jess getting her stem cells back as we are … almost …

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Getting “sprung” after receiving her stem cells.

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“Happy NEW birthday to you, happy NEW birthday to you. Happy NEW birthday dear Jessie, happy NEW birthday to you!”

September 24th, 2016 (Day +1)

Jess says it is good to be home and be in her own bed. She is taking sufficient meds to keep nausea at bay however since last night already mucositis is making her stomach sore constantly and her throat and upper GI painful upon swallowing anything including water. For this she is taking maalox, sulcrate, and dilaudid (2 mg every 2 hrs). So it’s been a cycle of take meds, sleep, and try to eat and drink, and repeat. 

This afternoon at her hospital check in the dilaudid was increased to 3 mg/2 hrs.

September 25th, 2016 (Day +2) “I can feel my heartbeat in my face”

Jess is having breakthrough stomach pain. So while 3 mg dilaudid/2 hrs takes the pain away it makes her sleepy and after 1.5 hrs she is needing something more for pain. 

This afternoon at the hospital check Jess was given subQ dilaudid and it worked like a charm except all she wanted to do was sleep … but sleep pain free, I might add. She managed to get in about half a cup of chicken soup during this time…in her stupor.

12 mg 2x/day of slow release dilaudid to start at 8 pm tonight was added to her medication buffet.

Food yesterday and today has consisted of very small amounts of soup, yogurt, scrambled egg, warm rice cereal, Ensure, and ice cream.

We were already told to watch her respiration on the 3 mg of dilaudid so that when the slow release was 12 mg, oh my! I get the whole s-l-o-w release thing but fifteen minutes after taking it she was totally pain free BUT she could feel her heartbeat in her face and ears. We couldn’t get an accurate read on the home BP monitor. A call to the on-call hematologist was in order or else hubs or I were staying up all night to watch her breathe. We were assured this was not unexpected and what we had to watch was her breathing … or lack thereof… What? Me wax dramatic? No way 😉

September 26th, 2016 (Day +3)

Last night was virtually a no sleep night. We are approaching 72 hours that Jess hadn’t slept more than 90 minutes at a time. We were happy that our hospital check was at 10 am today because we need a longer acting pain solution so that she can take in more calories and hydration.

Jess’ WBC today was 0.02 and her phosphate was low. So today she got IV hydration, IV phosphate, and three doses of diluadid subQ (including one for the road as we were leaving). They changed a few of her meds to liquid form to make them easier to take and, since the slow release dilaudid was ineffective, applied a fentanyal patch.

We were told that the mucositis will begin to resolve once the new stem cells begin to graft.

We watched some of the Clinton/Trump debate and she managed to get down a cup of Ensure enriched hot chocolate and a scrambled egg w cheese. Here’s hoping tonight is a better sleep.

The SCT day program at Ottawa General Hospital runs like a finely oiled machine. It is very impressive. Interestingly, all of the hands on care is provided by RNs (sometimes with student nurses in training); there are no RPNs or PSWs. The nurses are knowledgeable, wise, and caring. The program has a dedicated doctor, dietician, and pharmacist on the floor and they see Jess each day.

Bedtime  …and we hope she gets more rest.

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5 responses to “Update…update…update…

  • Anne Pile

    Thinking about you Jess and you too Judy….virtual hugs….so glad you can be home!

  • Pam

    Thanks for the update, Judy. Love to Jess!

  • janine Klaas

    So appreciative of the updates! Sending love & hoping that each day continues to be better than the one before it. Janine K.

  • Meghan

    Thanks for sharing an update Auntie Judy! I’m constantly thinking of Jess and will continue sending her positive vibes that the nauseous can come under control and she can have good night sleeps. Thanks so much for keeping us updated, I know I really appreciate it, as do so many other rooting for her! xoxo

  • Dianne

    Wow…it sounds like you three have had quite the past few days with little sleep. We sure hope things start to improve and Jess is able to get some rest and food as the days move forward. We are thinking of you all and sending our love and support. xoxo. Dianne & Barry

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