May 7

Went into clinic for blood work today. His counts continue to drop, but not so much that he needs transfusion yet. We can call Monday if he's very lethargic over the weekend. If not, appointment Tuesday for chemo.
Chest CT from Tuesday is a little inconclusive. There are Small groundglass nodules that seem to be focal atelectasis. (Lung stuck to itself). But no conclusive evidence of fungal infection. However the BD glucan test continues to show positive so he remains on the antifungal. He's staying accessed through next week and we'll continue IV meds at home each day. A pain, but better than larger infection, especially with his counts so low. It's possible hell stay on antifungal for the reminder of the treatment.

The pseudocyst near the pancreas remains the larger problem. He is very nauseous, moving makes him throw up. He wakes through the night with either belly pain or back pain and has lost another kg since Tuesday. He's also losing muscle mass at this point. We have a prescription for home physical therapy, hopefully can get that started next week.
The GI Dr spoke with me this morning and wants Connor seen by the adult GI. However when I tried to get an appointment, they are booking after June 1. Dr. Gregory (oncologist) and Dr. Perez (GI) are working to get him seen next week. If Connor hasn't got an appointment, they may choose to admit him, and that may force the Dr's hand on the consult. (He's already seen his chart and agrees that it needs to be drained, but wants to see him first.)
In the meantime Connor has enough food to get some meds in, he tried to have lunch today and promptly threw it up. Hopefully he'll manage dinner, but he goes from bed, to couch, to bed. As being upright both tires and nauseates him. We really can't get this taken care of soon enough. They did offer to admit him today, but said nothing was likely to happen until Monday regardless. So he is happier at home in own bed.

On a positive note, he received a "basket" of goodies from Sarah's Fight For Hope
Connor smiled today at the clinic for the first time in a while.  They gave him a couple books, one by xkcd author, and a book on soccer premier league. A very high quality Arsenal jersey, tea, mug and some treats, and some money. It was a key and and thoughtful gift specific to Connor and really made his day!
As yesterday was Nurses Appreciation Day, I took cookies into the Valerie Center, the PICU, and the Pediatric floor. 
Huge Thank you to my friend Linda for the beautiful job on the cookies. They were so happy to see them!

Comments

  1. Nana PenMay 7, 2021 at 7:23 PM

    Love the cookies! Cheers to Linda for making them and the designs and decorations are great! That would definitely have put smiles on your care team faces!
    Also glad that Connor got a lift from his special gift basket. He needs that lift so much. It's been a rough week after a rough month. Thinking of all of you🤗💞

    ReplyDelete
  2. KinlinFamilyMay 9, 2021 at 10:36 AM

    The rough patch continues - UGH!! 😞 Hopefully home PT will have some insights and ideas that Connor can put to work on his strength and nausea. The medical system can certainly test the boundaries of common sense, but it is very good to hear that other doctors are working with you to get done what needs to get done. Another drain on you mentally ... sending you strength and patience ... ohm. 🙏The package sounds like a wonderful, much needed boost for Connor - thank goodness for people that just “get it” and know what to do. My hat is off to them ... and also to Erin and Linda for the most creative cookies - they are very unique (and no doubt delicious) and so thoughtful when you already have such a full plate. You continue to be amazing! Sending HUGE hugs ... especially on Mother’s Day (just realized). 💕💕K/C/M/L

    ReplyDelete
  3. BeataMay 9, 2021 at 10:52 PM

    Hang in there, Connor!! Such awful times. We are all thinking of you!! Every smile counts through the arduous journey. Erin, I hope you had a good rest of your Mothers day. You are really the best!

    ReplyDelete

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