We took the twins in for shots today and to get Taran’s blood redrawn. The poor little kids; they were not very happy at all. It was really sad to see. After the doctor’s visit we dropped them off at Phil’s mom’s house and took Serenity up to Primary Children’s.

It was really crowded today and we waited awhile to get seen. She weighed 12.2 kilos but I’m afraid I haven’t noticed what she was before, so I don’t know whether she gained or lost. There was a mom in the waiting room who came back after her son weighed in and announced, “He lost weight again.” Several of us gave her this look of understanding and a few said they were sorry. I thought again how odd it is to be a part of the cancer club, to know the worry and fears behind that sentence.

Because it was so crowded there wasn’t a room for us at first so we went back to the infusion suite and Serenity got her port accessed. She wasn’t happy about it but it went quickly. When her labs came back ok we headed down to the Rapid Treatment Unit for the lumbar puncture. Serenity had been fasting all morning in preparation for it and she was starting to get a little fussy. (It was 1:00 p.m. by now.) Things went smoothly with her procedure, they gave her intrathecal methotrexate and when she woke up she ate a few crackers and then we went back upstairs to the oncology unit.

Some friends of ours were inpatient again with their 4 year old, so we stopped briefly to say hi to him then went back to the infusion suite for Serenity’s chemo. Her IV methotrexate was increased to 250 (mg squared, I think?) and she also got vincristine. The doctor we saw said she is doing really well with the high doses of chemo. She’s had a few minor side effects but nothing like we could be seeing.

On the way home she slept in the car and was a little bit fussy. She complained that her tummy hurt but they had given her some anti-nausea medication at the clinic so it must have been helping. At home she took a long nap, refused dinner, and fell back asleep quickly. She feels really warm to me but her temp was only 99 degrees so I’ll just keep an eye on it. She has been dozing fitfully but overall is doing pretty well.

Serenity clowning around with her new dress and sunglasses, a gift from our awesome doctor.

What a goof.

The day she broke her wrist and got her temporary cast.

She loves this little toy.

I mean really loves it.

She didn’t seem to mind her cast too much.

At the clinic getting intravenous chemotherapy.

I haven’t blogged as steadily as I should and I am sorry for that. For some reason it is hard to make time for it lately. Here’s a quick update:

Serenity went to the clinic on Thursday. Once again her numbers looked good and so they increased her methotrexate to 200 (milligrams squared I think). In 10 days she is due to go back and have another increase and a lumbar puncture. I asked the NP whether it’s common for kids to make it all the way to 300 mg without crashing. He said it happens, but most crash in the 200 to 250 range. So we will see. I keep thinking she is a little warm but when I take her temp she’s ok.

She has had a little rash on the inside of her thigh. I think I mentioned it at our last visit although I don’t remember. This time when I pointed it out the oncologist said it looked like ringworm, and prescribed a cream for it. The funny thing is it wasn’t circular that morning but had changed by the time we got to the clinic.

Serenity is also due for a dental checkup next week and so her doctor prescribed her an antibiotic as a precautionary measure.

She got her cast off! She wasn’t sure she wanted to say goodbye to it and she screamed the whole time it was being cut and removed but then she settled down. Her arm is raw and irritated from the cast but she is pleased to have the use of both hands.

I’ve done pretty well at staying off caffeine. My goal was 7 days (and then we’d see…) Yesterday I remarked that Phil that it was surprisingly easy and I hadn’t even had a headache. Also I seemed to crave sweets much less than before. Today was day 6 and I woke in the night with an awful headache. Advil through the night and all day didn’t touch it and I had to work on my lesson. I decided to get a Pepsi but it didn’t help as I had hoped, so I didn’t finish it. But man, it tasted good. I had kind of hoped and expected that it wouldn’t.

Week 3 of my new eating plan has me giving up sugar for 7 days. I feel like I can do it, since the cravings have decreased, but I’m not sure whether I’m going to. I have tried so many times and failed, I just don’t know if I want to try again. I’m still thinking about it.

 I’ve been swamped lately and haven’t taken the time to blog for some time, but this is definately something I have time to stop and share with everyone.

I don’t know Tom very well, our paths cross several times a year at Utah networking and other events (he’s a regular at the CTO Breakfast), but I do know he’s a good man and someone I could be friends with.  About a month ago while we were at the Oncology clinic with Serenity I saw him in the hall and had a quick chat with him.  His son Tobin was in the ICS ward where Serenity had been in-patient a month or so earlier.  Tom explained to me that Tobin had neuroblastoma (a type of brain cancer) and I could tell by his demeanor that things were not going well.  Today I received an email from Tom that yesterday Tobin moved on to a place of no pain and suffering. 

Tobin was diagnosed in December of 2007, only 8 months ago, he would have turned 4 years old later this month. 

There will be a viewing this Wednesday evening with Funeral services on Thursday (Aug 21) Tom has posted details on his blog here.  I hope the Utah geek community can help support the Gregory family the way that it has my family. 

Tobin has a memorial fund at Washington Mutual Bank (ask to deposit into the Tobin Gregory memorial fund at any Washington Mutual). 

This obviously strikes very close to home for me - my heart and prayers go out to the Gregory family.  I can vividly imagine what they’re going through and my heart aches for their loss. 

I think maybe I whined a little bit too much in my last post. Thanks for putting up with me.

Serenity has been ok with the increased dose of methotrexate. She has been grumpier than usual, and there are times when she cries and cries and I can’t figure out what is wrong, but they are short lived. I am assuming and hoping that her numbers are still ok. (They were on Monday.) Because the kids and I have been going a little stir crazy and so we’ve left the house a bit. And we went to Arctic Circle. And I let her play in the children’s play area. Hopefully it wasn’t too tremendously germy.

Normally she doesn’t ask to go over there and so she and I just sit and watch the other kids. It’s a small restaurant and usually pretty empty. But this time she did demand ask and I gave in and said yes.

She was wearing her little Cancer Chic shirt and someone came over and told me she reads the blog. It totally made my morning. And I was distracted and didn’t even ask her her name or say anything much so if you are reading…Hi! I’m sorry I wasn’t friendlier!

That evening I had Serenity with me at Walgreen’s and a woman came over to me and said how much she liked Serenity’s hair. She asked if “he” had been born with hair, and did we buzz it or what. I explained that She had cancer and understanding dawned on her face as she said, “She has leukemia!” Yep, that’s what she has. The sweet woman then proceeded to tell me that Serenity will be just fine because the treatments for leukemia are so remarkable. And she is right. They have come far; they are remarkable. Not a day goes by that I don’t think about how fortunate we are that Serenity is low risk ALL.

ALL has about an 80% cure rate. That is really awesome. It also means that 1 in 5 children die. And while I know that people are trying to say the right thing by being so positive, sometimes it feels like they gloss over the fact that this is really hard. I had an acquaintance tell me a few weeks ago that cancer is really no big deal anymore (speaking of Serenity) because of how far the treatments have come.

Let me assure you, it is a big deal. A little boy close to Serenity’s age died from ALL recently. We know people who have dealt with AVN (where the bone tissue actually dies), mouth sores so bad that the child could not eat and had to take oxycodone for the pain. We know of a little girl who has had multiple brain surgeries, several children in wheelchairs, many, many children who are repeatedly spending weeks in the hospital because of infection or low counts or fever. All of these kids with ALL. Every day that goes by I worry what might happen, or wonder whether we will really come through this unscathed.

Please don’t tell me that I have nothing to worry about. Please don’t tell me that this is no big deal. And for heaven’s sake please don’t tell me about the person you know who had leukemia and died, but I don’t need to worry about that because it was a long time ago and they’ve come so far since then.

Just tell me that you care. I promise that is enough.

Having a cancer kid is our new normal, and most days it’s not something I dwell on. We’ve been incredibly fortunate that Serenity’s side effects have been manageable, and at times it’s easy to look at her and think she is not so different from a healthy kid.

Then there are other times when it all feels very surreal. Those are the times when I think about picking my baby up, leaving the hospital, and proclaiming to the world, Enough! We are not doing this ANY MORE. It feels like if I try hard enough, I can ignore the whole thing and pretend we are back where we were before she got sick.

I went alone with Serenity to her appointment today. I was a little nervous, because it’s become very routine and there are certain things that Phil does each time. They’re his job, and I don’t do them the same way, and I was afraid I would forget something and she would become upset. But it went ok.

Parking was horrendous. I have never had to park far away and today I had to park on level 3 because the parking lot was so full. Serenity wore her mask into the building and was a good sport about the fact that I can’t put it on her face quite like Daddy does. The oncology clinic was crowded and we had to wait longer than normal. She allowed the nurse to weigh and measure her without complaint, which has only happened one other time. We sat at the craft table and did stickers.

When we were assigned to our room she didn’t want to sit in the rocker, like she normally does. We sat side by side on the bed and a woman from Child Life came in to say hi and bring Serenity some toys. It wasn’t the Child Life person that she always sees, so she was a little bit wary. She held perfectly still while they accessed her port, another thing that she has only done once before. She winced a little, which made me wonder if it hadn’t numbed enough.

Her numbers were good so she didn’t need a transfusion. I pointed out her peeling hand and foot to the nurse who said that it was probably a side effect of the methotrexate. She allowed the nurse practitioner to examine her but when he tried to look at her mouth she burst into tears and sounded very frightened. I think she had been nervous all along, and suddenly it became too much.

She didn’t want to sit on my lap when it was time for the chemotherapy infusion, so I had to do some convincing. She decided she wanted to watch her little DVD player and the big TV in the room simultaneously, which made it impossible to hear anything. Every couple of minutes she would yell, “Push pause!” and I would pause her movie. She’d immediately push the play button, wait a minute or two, and then yell for me to pause it again.

On the way home I thought about the fact that everywhere I look, there is something to remind me of the overwhelming support Serenity has received. She watched her movie on a DVD player that was a gift. On the drive up she played with toys that she has received over the past 2 months. Her dress and shoes were purchased with money that had been donated. The stuffed animal she brought and the blanket that she used were gifts. It is easy to feel frustrated and overwhelmed because the novelty of her diagnosis has worn off and sometimes it feels like the world has forgotten her. Today I was reminded that she is loved by many.

Last week all of the kids got a present in the mail from someone who doesn’t know us, but heard about our story. It was a good day and all of my kids were happy.

Serenity has complained about her tummy hurting since our visit, and I’ve given her some zofran. She hasn’t thrown up but she also hasn’t eaten. Thank heavens for nursing. She’s had some diarrhea so I am trying to keep her well hydrated. She has been cranky and short tempered which is so unlike her. I hope that it is just because of a long day, and not because of the chemo.

Serenity has done well this week after the IV vincristine and methotrexate. She has asked for Zofran a few times but hasn’t thrown up. She does have a couple of mouth sores, but I’m not positive if they are from the chemo. She isn’t eating as much as I’d like. She nurses a lot through the day & night so I know she is staying hydrated. She will often eat without complaint but just as often she will decline to eat anything. She doesn’t act like her mouth hurts, and the sores seem to go away quickly. She has only had 3 so far, but I will mention it at our next visit.

Her eyelashes have almost completely fallen out and her eyebrows have thinned considerably. It surprises me, because she still has stubble on her head and I had thought that lashes and brows fell out much later than the hair on her head. She doesn’t complain of leg pain anymore, although she still moves very slowly up and down stairs. She doesn’t seem to mind her cast at all; it’s become part of her. It was cutting into her hand and arm a little bit (where the edges are rough) and causes several sores and places where the skin rubbed off. We put Moleskin on the edges of her cast and that seems to help.

Our next clinic visit is on Monday and they will increase her dose of chemotherapy. Phil will be out of town, so I am really hoping that she does ok so that our household will run smoothly in his absence. I’m more than a little anxious about having him gone for 3 days.

Serenity started Interim Maintenance this week. The hospital has reverted to an older protocol which has us going in every 10 days for intravenous vincristine and methotrexate. Although we had originally been told that most kids don’t get nausea with vincristine, it is one of the medications that Serenity was taking during Induction and she was quite sick. So we are not sure what to expect during this phase, as far as side effects. The good news is that she won’t have to take any oral meds at home, except as needed to manage side effects. This is a huge relief. I would much rather drive up to Primary Children’s 3-4 times a month for IV meds than have to try and force her to take them each day at home.

During this phase her chemo dose will be increased at every visit. At some point her blood counts will drop, and then the chemotherapy dosage will be dropped a little bit too. They want to give her the maximum dosage they can without causing her hematocrit, platelets, and ANC to drop too much. What this means is that we’re expecting her numbers to drop, we just don’t know when. I know this isn’t a huge thing, but it’s kind of scary to me. In the beginning her numbers were frequently low and she had to have many blood transfusions, and we couldn’t take her out in public places. With school starting up I worry about what she will be exposed to through the older kids.

Yesterday’s blood drive was a success. The people at Twelve Horses are awesome. Not only did they allow us use of their office space, but they provided food, drinks, and a complete Rock Band set up.

We had quite a few people show up and so there was a steady stream of donors. It was fun to hang out and visit and even Serenity had a good time. I’d been afraid she would get bored being there for 5 hours but she really enjoyed it.

THANK YOU to everyone who blogged, twittered, and spread the word. We got 23 units of blood, which ARUP says can save up to 69 lives. I was very impressed with the number of first time donors that showed up, and people who’d had a bad experience donating in the past, and people who saw our signs and walked in off the street. There was even one wonderful girl who let them stick both arms trying to get a good vein.

We plan to do another one in October, in multiple locations. You might not think donating blood could be “fun” but it really was.

The Serenity Foundation’s first National Bloggers Blood Drive was a big, fun success!  We collected 23 units of blood which, by the numbers from ARUP, calculates to saving 69 lives - not bad for a quickly organized event! 

 I’ve uploaded the photos I took of several donors, they’re available on my Flickr Feed here.

Twelve Horses hosted the event for us and provided food and drinks (unfortunately we found out that RockStars are a no-no after you’ve donated blood - they bought a bunch of them for us and we couldn’t drink them!) they also let us have Rock Band setup so everyone could play during the 5 hours the blood drive was going on.  HUGE thanks to Twelve Horses!  If you need internet marketing done, drop them a line!

We had The Serenity Foundation’s mascot on hand for the whole blood drive, she had a lot of fun meeting everyone!

I’m feeling particularly drained from donating, so instead of reporting on the whole day, I’m going to just tell my story.  Check out the link to my Flickr feed for more pictures of donors.

This was the first time I’ve donated blood since I was a teenager.  I decided to organize the blood drive after my daughter, Serenity, received multiple life-saving blood transfusions while being treated for Leukemia.  As much as I hated doing it, I’m really glad that I was able to and I’m extremely grateful for all those that donate blood - both those that did today (many for the first time) and those that have donated in the past. 

I was really freaked out today about the whole donating thing, literally scared senseless about getting poked with a needle.  It’s amazing how such a tiny thing can cause such discomfort before it’s even inserted!  I put off donating until pretty much the last minute and it was with great trepidation that I filled out the forms and sat down.  Fortunately, Brad Baldwin came in to donate for his first time and I used his bravery to motivate me to get on with it.  Charlie Oliver also came in and became my “blood brother” as we were stuck and drained at pretty much the same time.  Here’s how freaked out I was (click the picture for a bigger image):

(and yes, I’m wearing a Captain Hammer shirt from Dr. Horrible!) Even once the needle was in, it was still a pretty intense time for me. 

So, for all those of you who thought I was tough or whatever, there’s proof that I’m a big sissy!  And for those of you who have told me that you’re too squemmish for needles/donating - hey, I did it and so can you!

Our next Blood Drive will be in early October (I’ll be announcing a date at the end of this week).  This time we only had Salt Lake going on, next time in Utah we’re planning on having Ogden, Salt Lake and Provo all going at the same time and hopefully Seattle, Phoenix, San Francisco, New York and many other cities all going at the same time.  If we managed to save 69 lives this time, just think how many lives we’ll be able to save if you help us spread the word!  If you have already installed the widget on your blog, please leave it there, the banner will update with the next date as soon as we have it set - if you don’t have it installed yet, please consider installing it!

Blogging for good and saving lives, quite a concept!

#TSFBlood

Be a Hero, Save a Life, Donate Blood!

This is a reminder about the National Bloggers Blood Drive today. If you’re in Utah please come join us at Twelve Horses in Draper any time from 3 - 8 pm today. There will be movies, games, snacks and a couple prize drawings, not to mention you will be hanging out with lots of cool people!

Twelve Horses is located at 13961 South Minuteman Drive, Suite 125 in Draper. Take the Bangerter exit off I-15, head east and turn south on MinuteMan Drive, the building is on the east side.

Be a Hero, Save a Life, Donate Blood!

This is just an RSS reminder about the National Bloggers Blood Drive today, if you’re in Utah please come join us at Twelve Horses in Draper any time from 3 - 8 pm today.  There will be movies, games, snacks and a couple prize drawings along with hanging out with lots of cool people!

Twelve Horses is located at 13961 South Minuteman Drive, Suite 125 in Draper.  Take the Bangerter exit off I-15, head east and turn south on MinuteMan Drive, the building is on the east side.

For more details, see my previous post here.

Remember to tag flickr, twitter and blog posts with TSFBlood so it’ll show up on the NBBD Aggregator!

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.

It’s almost time for The Serenity Foundation’s first quarterly National Bloggers Blood Drive! 

The goal of the NBBD is to hold local blood drives in multiple locations around the world that occur at the same time allowing live tweeting/flickring and blogging to go on.  This being the first event and being planned with very little lead time and especially that it comes at a time when I’m completely swamped - it won’t be quite a representation of what I’m hoping the next one will be.  Hopefully this Wednesday’s event will be enough to really get the conversation started about the NBBD and the next one will have more locations. 

If you’re interested in hosting a local blood drive in your area next quarter, let us know - the next one will be in October. 

For now, if you live in Utah, please join us on Wednesday (July 30th, 2008) at Twelve Horses between 3 and 8 pm!  There will be a couple raffle giveaways, food, drink and movies for all.  Hope to see you there!

Twelve Horses is located at 13961 South Minuteman Drive, Suite 125 in Draper.  Take the Bangerter exit off I-15, head east and turn south on MinuteMan Drive, the building is on the east side.

We have a Facebook group here and any blog, flickr or twitter entry with the term: TSFBlood is automatically aggregated on the Blood blog here.  We also have a widget/plugin you can use to help advertise the blood drive here.

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.