Category: Leukemia

Serenity got a purple cast today.

We took her in Friday but her wrist was too swollen to cast. We didn’t expect that. It wasn’t swollen on Wednesday when it happened and we hadn’t unwrapped the temporary cast that Insta-Care had given her. According to our pediatrician it can take 3-4 days for it to swell.

So this morning we took her in and she loves that it’s so colorful.

The twins also had physicals this morning. They are healthy and growing well. We asked for the lab to run a blood panel on both of them, just in case. We haven’t got the results back but I think if something was amiss we’d have heard.

Taking the 3 kiddos (3 and under) to the doctor at once was an adventure. Phil and I both were there and spent our time chasing babies and answering questions and trying to distract little ones and rolling our eyes at how hard it is to keep 3 little ones contained in the same room when they’re tired of the toys and they don’t want to be there.

On Wednesday is our blood drive in Serenity’s honor, and on Thursday we go back to the oncology clinic to start interim maintenance. Other than that not a lot is going on. Our oldest is watching 4 kids this week so they came over here today and our kids loved having playmates. When they were all in the van I thought to myself, “This is what it would be like to have 10 kids.” (Two of ours are staying with family members for the summer.) By the end of the day I was feeling a little frazzled so Phil gave me a break for some mommy time. It’s not often that I choose to spend my mommy time tidying up the house, but it desperately needed it.

Vicki asked about the dress that Serenity wore to her last clinic visit. You can see another photo of it here. It is from Tea, a children’s clothing line. I was fortunate to find both a dress and a tunic in size 2 and… I ABSOLUTELY LOVE THEM.

Not only are they incredibly cute but they snap up the front, kimono style. This means that we can access her port by undoing a couple of snaps, instead of taking her shirt or dress all the way off like we have done in the past. (Taking her shirt off has become a huge deal and it is very upsetting for her.) I even like that they are sleeveless, because when her port is accessed, we can run the line out through the shoulder and it’s easily accessible and not in her way.

Have I mentioned how much I love these clothes?

Now that we are nearing the end of summer they are going on sale around the Internet, but I’ve had a heckuva time finding them in a size 2. If you know of somewhere that sells them, please let me know. I would love to get a couple more.

Serenity is doing pretty well. This is her week off of chemo and she has been feeling great. Her eyes bother her a little – we are not sure why – and she still waddles a little bit but her walk is getting better every day. I overheard one of the kids ask her the other day, “Serenity? Did you ever know how to run?” It was cute, and bittersweet. I hope that she will be off and running again before too long.

Her next phase – Interim Maintenance – will last for 50 days. We will have clinic visits every ten days, rather than once a week. I know there will be IV chemotherapy at those visits. I don’t yet know what all she will have to take at home. Since we are switching chemo meds again I think there is a strong chance she will have to deal with awful side effects again. But, I hope not.

Today one of the kids set her up on an occasional table (that’s the name of it ) that we have in the front room. And she fell off. I didn’t see it happen, but got the report when she started crying. She must have landed on her wrist funny because she complained about it throughout the day. It wasn’t swollen, and she could use it, but she continued to cry about it.

We decided it ought to be seen, so Phil took her in to Insta-Care where they x-rayed it and it is fractured. The doctor put a temporary cast on it and we will try to get in to the pediatrician in the next day or two to have it casted. My poor girl. She is having a rough time of it. With one arm in a cast she can’t roll over or even stand up very well from a sitting position. And she is in some pain still.

Phil blogged about The Serenity Foundation’s National Blogger Blood Drive (say that 5 times fast!) but I wanted to write about it as well.

Serenity received many, many blood transfusions in the early weeks of her battle with ALL. It was almost miraculous to witness how much better she would feel after receiving someone else’s blood over the course of 3 hours. While I have always had an appreciation for blood donation, seeing it save my daughter’s life & restore her vitality really brought home the importance of this.

On July 30, we will be sponsoring a blood drive in Draper, Utah. It goes from 3 pm to 8 pm and there will be food (I think), movies, and really awesome company. PLEASE if you are able, come donate blood. Here is a list of donor requirements. If you can’t donate blood I hope that you will still stop by to say hi and show your support of those of us with needles sticking out of our arms.

ARUP is the sole provider of blood to Primary Children’s Medical Center, where Serenity is treated.

They are holding several promotion this summer, so when you donate blood you could win a free car or a $50 gas card. (Someone from our group will win a gas card.)

The location of the blood drive is Twelve Horses. They are located at 13961 South Minuteman Drive, Suite 125, Draper, Utah. According to MapQuest, if you are coming from the south take the 14600 SO./UT-140 exit, EXIT 288. Turn right onto Highland Drive and left onto Minuteman Drive.

Please help us spread the word by blogging about this, or promote it on Digg, Stumble, or Twitter. Tag your entries #tsfblood. We would love to have a great turnout.

If you are not nearby but would like to organize a blood drive in your area, please let us know how we can help.

Tuesday night Serenity seemed to be in a lot of pain. She was crying and hysterical but wouldn’t tell me what was wrong. I think it was her legs hurting but I still am not positive. Finally, we gave her some oxycodone and she quickly drifted off to sleep.

Wednesday morning we had another clinic visit. She was a little crabby all morning. We had to be in Salt Lake at 8:30 a.m…..no easy feat! But we made it only ten minutes late.

There is always a little craft for her to work on while we are waiting for our turn to be seen.

We saw a doctor and a nurse practitioner we hadn’t seen before. I really liked the nurse practitioner. Serenity has been complaining about her eyes a lot. Again, I don’t know whether they itch, or hurt, or what. They haven’t been red and she can still see, but they occasionally water and she rubs them a lot. The nurse practitioner prescribed some liquid Claritin in case it’s allergies. I have really bad seasonal allergies but I don’t think that it’s that (because of the lack of redness, mostly).

Serenity was accessed via her port, like always. She screamed to high heaven, like always. It was over fairly quickly, thank goodness. They drew blood and everything came back fine. We took her down for another lumbar puncture. It took her a very long time to wake up. Maybe she was making up for last time. But she did wake up finally and it didn’t take her too long to get back to her old sweet self.

The dr told us that our next phase, Interim Maintenance, will be a little different than we had expected. The Children’s Oncology Group recently changed their recommendation so instead of oral methotrexate, they will give it intravenously. I confess I’m relieved. We have a hard enough time getting her to take her medicine. Also a friend of ours has a child with ALL and his oral chemo has really done a number on his mouth. He went nearly a week without eating anything because it was so painful. So although it means more trips up to Primary Children’s, and more gas money and time, I am glad we will be doing the chemotherapy intravenously. Apparently this is how they used to do it, then they switched to oral delivery, but about a month ago switched back after concluding that delivering intravenously lessened the risk of relapse.

So we are finishing up this Consolidation stage, then she gets a week off from clinic visits, and then we move to Interim Maintenance and I think our visits come every 10 days, rather than once a week. We are making progress!

Serenity received a gift in the mail.

Needless to say, she was thrilled.

Serenity’s Amazon Wish List does not appear to be updating, so if you’ve bought her a gift and are wondering why it’s still showing up on her site, that’s why.