Every week it gets harder and harder to write about our little Snail. I think it is partly because I have been away from her for what seems like forever (9 weeks) and the silent language of sisters is faint. The language that has no real words and yet is something we understand so clearly with only one look or touch. It is also because it is hard to understand all of the medical terms and what is normal or not. I am an extremely visual person so hearing the latest update is often Greek to me. I also am left to wonder if she is really ok or if my Team Snail informants are sparing me details because there is nothing I can do to help her. I apologize for my delay, here is the update you have all waited patiently to read...
Currently Valerie visits the infusion center (outpatient clinic) 3 times each week and an appointment with her transplant doctor or her NP, Carrie. Her appointment is usually around 9 am and then her blood is drawn to check her blood component levels which include her white blood cells, platelets, red blood cells, etc. They are also checking for her chemistry such as magnesium and potassium in particular. She is on meds that deplete her magnesium and potassium. If there is no wait and her levels look good she can be finished in an hour and a half. This has only happened once so far and the more common appointment keeps her there until 4 or 5 pm. Keep in mind Valerie is very much like an infant in that she has to sleep a lot and of course her delicate immune system. This long day is physically and emotionally hard on our little Snail.
Going back to Tuesday, December 15th, Valerie started another anti-biotic, Dapsone, an oral capsule. She needs to take an anti-biotic that targets a particular type of pneumonia called PCP which she is suseptable to. Within 2 hours of taking the Dapsone, she started to get nauseous. Her doctor stopped the Dapsone on the 18th and substituted it for an IV version of another anti-biotic. True to form, she had a reaction to this anti-biotic as well. This time she began to rash even before the IV was finished. She was immediately put on IV Benadryl to calm the rash. She continued to take Benadryl over the weekend and through the next week. The nausea from the Dapsone has continued since, but has been subsiding little by little. Today she can eat fairly well with the help of some meds and she is so much better than 2 weeks ago when literally a cup of food would have been a good amount for a whole day.
Currently Valerie visits the infusion center (outpatient clinic) 3 times each week and an appointment with her transplant doctor or her NP, Carrie. Her appointment is usually around 9 am and then her blood is drawn to check her blood component levels which include her white blood cells, platelets, red blood cells, etc. They are also checking for her chemistry such as magnesium and potassium in particular. She is on meds that deplete her magnesium and potassium. If there is no wait and her levels look good she can be finished in an hour and a half. This has only happened once so far and the more common appointment keeps her there until 4 or 5 pm. Keep in mind Valerie is very much like an infant in that she has to sleep a lot and of course her delicate immune system. This long day is physically and emotionally hard on our little Snail.
Going back to Tuesday, December 15th, Valerie started another anti-biotic, Dapsone, an oral capsule. She needs to take an anti-biotic that targets a particular type of pneumonia called PCP which she is suseptable to. Within 2 hours of taking the Dapsone, she started to get nauseous. Her doctor stopped the Dapsone on the 18th and substituted it for an IV version of another anti-biotic. True to form, she had a reaction to this anti-biotic as well. This time she began to rash even before the IV was finished. She was immediately put on IV Benadryl to calm the rash. She continued to take Benadryl over the weekend and through the next week. The nausea from the Dapsone has continued since, but has been subsiding little by little. Today she can eat fairly well with the help of some meds and she is so much better than 2 weeks ago when literally a cup of food would have been a good amount for a whole day.
The rash is running its course and just when we think it is almost gone it comes charging back today. It started on her ears, moved to her hands, then feet and over the rest of her body. Her feet have been bright red, hot to the touch and felt like "walking on nails that were on fire". Mom and Dad packed her feet in ice at first then moved onto gel cold packs. Rotating several packs from the freezer to her feet, it is the only thing that helped at all. She could literally turn the packs from frozen to warm to the touch within a few minutes. This lasted from the 24th until the 28th. Finally Snail was given a different anti-histamine much stronger than Benadryl and her usual Pepcid was changed to Zantac. Apparently there are 2 different kinds of histamine receptors. The H1 receptors respond well to the super strong Benadryl stuff and Zantac contains an ingredient that blocks the H2 receptors. (See, Greek) All I know for sure is that this combo seemed to help.
Brent took this week off from work so he and Valerie were able to spend some much needed time together. She is finally feeling somewhat better enough that they can go see the beach after her appointments or go see the sunset. This is the one they saw tonight.
On New Years Day, Brent took Valerie to Sunset Cliffs to ring in their new year and San Diego's gorgeous horizon did not disappoint. My Dad took these pictures from the bay. I can't help but think that it is a sort of promise for things to come. It is horrible for a big sister or any other member of Team Snail to hear what our little Snail is having to endure. She is stronger than all of us and amazes us daily! In this we can take comfort and joy, she is really doing well by transplant standards and after all of the chemo and radiation. To us it is horrible but to the doctors she is great! Keep going Snail! We are in front, side and behind you all the way.
Brent took this week off from work so he and Valerie were able to spend some much needed time together. She is finally feeling somewhat better enough that they can go see the beach after her appointments or go see the sunset. This is the one they saw tonight.
On New Years Day, Brent took Valerie to Sunset Cliffs to ring in their new year and San Diego's gorgeous horizon did not disappoint. My Dad took these pictures from the bay. I can't help but think that it is a sort of promise for things to come. It is horrible for a big sister or any other member of Team Snail to hear what our little Snail is having to endure. She is stronger than all of us and amazes us daily! In this we can take comfort and joy, she is really doing well by transplant standards and after all of the chemo and radiation. To us it is horrible but to the doctors she is great! Keep going Snail! We are in front, side and behind you all the way.
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