Category: Serenity

She was discharged this afternoon. 

It has been a very long day and I am bone weary.  The other kids come home tomorrow.  Serenity has another dose of chemo at the clinic on Monday.  We have a long road ahead of us.

But it is nice to be home.

…if you love stuffed animals.

We have received so many stuffed animals; I almost think they will need their own bedroom at home.  😉  I think we’re up to 8 stuffed animals now, as well as 2 blankets and several other toys.

This morning Serenity reacted again to her antibiotic, throwing up several times.  The doctors decided to switch her to something else since she needs to keep taking it through Friday.  She has eaten a little bit and done ok with the assortment of other medications they are giving her.  I just wish I could help her to understand that by thrashing around and spitting everything out she is only making things harder on herself.

She is sleeping now.  They have been giving her Benadryl regularly to combat the effects of some of the other meds, and today they added Zofran to help with the vomiting.

I intended to only blog at Serenity’s site but I thought I’d blog here about being an emotional wreck.

Up until now I’ve been ok. A few moments of near hysteria, but overall I haven’t felt quite as sad as I thought I ought to be. In fact, when my friend Amanda offered to let me cry on her shoulder I told her I was hopeful that all the doom and gloom would pass me by, as I was feeling so positive. She kindly refrained from laughing at me.

Of course I spoke too soon because today was a whole different story. I think it started when the social worker came in and told me for the umpteenth time about how life will never ever be the same. It wasn’t anything I haven’t heard already a dozen times in the past few days, but this time it really started to sink in, the idea that when my child runs a fever, we’ll be at the hospital. That if she falls and gets a bloody nose, we’ll be at the hospital. That we will miss church regularly to keep her immune system safe, that things like going to McDonald’s play place are a thing of the past. (And for the record, I do think McDonald’s play place is kind of gross, but it’s saved my sanity many a day.)

After hearing all this and trying not to let the smile plastered on my face falter, I started to panic about my upcoming drive home to get some paperwork I needed. I wanted to delegate the task to someone else and avoid the 3 hour round trip altogether, but since I didn’t know where the paperwork was I knew I needed to go myself and hunt for it.

Before I was even out the door of the hospital I was feeling anxious and wanted to turn around. It took me a few minutes to find the car in the parking garage and I was a nervous wreck heading out on to the road. I honestly didn’t think I could make the drive, but I didn’t know who I could ask to drive me. I called Phil a few times from the freeway in tears and he reassured me that Serenity was fine and that if anything happened he would let me know.

I made it home & looked all over for the papers but couldn’t find them anywhere. The file I thought they were in was empty so it was a wasted trip. (And I still need to track down the important paperwork!) I wanted to take a shower at home but I’d forgotten that the hot water heater was turned off (because it leaks), so I turned around having wasted the whole afternoon and headed back.

Anyway, all around an emotionally & physically draining day. Then this evening Serenity reacted again to her antibiotic & threw up twice. I am starting to dread the meds routine as much as she is.

Serenity reacted to her blood transfusion last night and required 2 doses of Benadryl in order for the redness and itching to go away. The Benadryl made her sleep soundly, so when she awoke she seemed a little like her old self.

Shortly after waking she received a dose of Fortaz (antibiotic) intravenously, which she has been getting all alone. A few minutes after the medicine was started she began throwing up and her face and neck turned all splotchy and red. We aren’t sure whether it is a delayed reaction from the blood last night, a side effect of the chemotherapy (Vincristine), or an allergic reaction to the Fortaz. Our nurse brought in another dose of Benadryl which has helped, but left her feeling woozy and tired.

This morning we gave her Prevacid, Alopurinol (to prevent uric acid from building up in her system), and Dexamethasone (an oral steroid). She needs a dose of calcium carbonate as well. We are spacing everything out so that if she reacts or throws up we’ll know what caused it. It is so hard because she requires so many medications throughout the day, and she doesn’t like taking any of them. We often have to hold her down and force it into her mouth (using a syringe) and then comfort her after the fact. I’m hoping that as time goes on she will become resigned and fight us less.

It wasn’t an easy morning for her but now she’s very drowsy & zoning out in front of the TV.

From here on out updates about Serenity’s progress will be posted on

LiftingUpSerenity.com 

Many people have been praying for Serenity since her diagnosis was announced.  Shortly before her surgery, the hospital chaplain said a prayer and asked our Heavenly Father to lift up Serenity during this time.  I don’t remember the rest of the prayer but that phrase touched us and as we were considering site domains it seemed an appropriate expression of our hopes and wishes for her during this difficult time.

Thank you so much for the outpouring of love that we have felt from around the world.  Your thoughts and prayers and donations have helped more than I can express.