She would tell you that today consisted of forcing down meds, followed by throwing up meds. Over and over.
Ok, so I lied.
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 […]
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.
A rough morning
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.
A new website for Serenity
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 […]
From here on out updates about Serenity’s progress will be posted on
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.
Family visits and new stuff from online friends!
This is Day 4 of Serenity, my baby, being diagnosed with and treated for Leukemia. Day 3 is here.
Today started out peacefully, Serenity slept in pretty late – much needed sleep!
Due to the incredible outpouring of generosity by friends and community online, the ChipIn widget earned over $1,000.00 in less than 24 hours! Once Serenity […]
This is Day 4 of Serenity, my baby, being diagnosed with and treated for Leukemia. Day 3 is here.
Today started out peacefully, Serenity slept in pretty late – much needed sleep!
Due to the incredible outpouring of generosity by friends and community online, the ChipIn widget earned over $1,000.00 in less than 24 hours! Once Serenity woke up, she sat around for a while, picked at her food and glanced at the TV. Now that she is being more active, we suddenly realized that we don’t have much for her to do here! We discussed the appropriate use of the donated money and decided that since most of her visitors have brought her something, we would consider some of the donations to be virtual visits. I headed to the store and bought several new toys that she could play with while on her bed (it really hurts her to stand-up due to her treatments). While I was gone, Adria got her ready for the day so that when I returned, she was sitting up ready to play.
I bought some of her favorite things to play with at home and she really had a blast with them!
As is typical now, after a little while playing she quickly became very worn out and was ready for a nap.
In the afternoon, all of her siblings showed up for a quick visit:
Her big sister, Talysa, jumped up on the bed and hung out with her for quite a while. Gibson helped organize her toys and gave her stuff to do with Talysa.
The twins, Indigo and Taran, also hung out for a while.
A little later her big brothers, Kaniho and Sarek, showed up for a while (all the kids are split up, staying with different relatives in different cities).
She also got to visit with both of her grandparents (Adria’s mom died of cancer about 8 years ago), some people from our neighborhood, and some other family friends. While Kaniho and Sarek were here, she was getting a blood transfusion.
After they left, Serenity started having a bad allergic reaction to the new blood (this is frequently the case). She very rapidly developed a rash that covered a large portion of her body in about 15 minutes and had to have Benadryll again to combat it.
(click the picture to view a much larger version)
The Benadryll worked great to knock down the allergic reaction but it made her very tired again. In fact, she got the Benadryll around 7:00 and has been sleeping ever since. We’re still learning how to classify her day for her, but we think this was a fair day.
Tomorrow we’ll be announcing a project that several volunteers have been working on. It’s a full fledged donation site that will very soon have a bank account behind it and an EIN so people can get a tax deduction from donating. The site isn’t finished yet, but it’s coming together very nicely. If you want a sneak-peek, you can see it at http://liftingupserenity.com/ I would like to quickly share the story behind the name of the site. On Sunday morning, just before her surgery, the Hospital Chaplain came by and asked us if we would like her to say a prayer for Serenity. We happily accepted and during the prayer, she said something that really stuck with us. She said, “Lord, please lift up Serenity in your arms while she is in surgery” (or something to that effect, unfortunately we can’t remember it verbatim). Adria’s friend, Amanda, was in the room with us and we all commented that that line in her prayer was particularly beautiful and we decided that her support site should be called Lifting Up Serenity. Once it is active, that site will become the primary support and reporting site for Serenity’s battle with cancer.
While I’m sharing name origins, I’d like to share the origin of Serenity’s name and how she is living up to it.
Adria’s water broke on Monday, July 3rd. We were originally going to name her Xion. Since it looked like she might be born on July 4th, we decided we would instead name her Liberty. Well, she wasn’t born until Friday, July 7th. By that point, we were in full baby naming mode again and thought about the Serenity Prayer.
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
We particularly had in mind the line about accepting the things I cannot change, in this case, as it referred to our baby being born. We chose the name Serenity for her based on that line and on the name of the prayer. There may have been (definately was) some influence on me to go with that name given that I love the Firefly series and the subsequent movie “Serenity”. Now she is living up to both of those sources of her name, fighting cancer definately calls for the serenity to accept things that cannot be changed. Likewise, the ship Serenity was a brilliant design capable of getting herself out of many a dangerous scrape. She also kept getting beat up and knocked around, but always came back fighting like mad, just like my baby.
Please forgive the randomness of the last part of this post, but I was thinking about her name quite a bit today and how she is really living up to it. Serenity – Go, Fight, WIN!!!