Spring Party

Alexis had her spring party today at school. Her school is celebrating its 25th anniversary, so it was a birthday party theme. They had games and crafts to do and a life size hungry, hungry, hippo game. Alexis went between her two Frieda in her class and her friend that is one year older. She wanted nothing to do with mom, which was great. Nice she is learning how to use her language and be social.

School work

It is so fun to see the school work that comes home from kindergarten. Recently, Alexis brought home this worksheet about where he would be in the future. She's going to be a mom, a dad (that might be a little hard), a doctor, and own a dog. Being a doctor doesn't surprise us. With her background, she's already had surgery on half her body parts and taken half the drugs on the market, so that may give her the competitive edge in med school!

Maintenance drugs

Now that we are in maintenance, we are on a solid monthly drug rotation. This includes 7 different drugs. Some of them are daily, whereas some of them have different dosages, days, etc.

Synthroid- daily dose in the morning for her thyroid. Has to be taken half hour to hour before food intake.

Keppra- twice daily dose for her seizures. 

Topimax- twice daily dose for her seizures. 

6MP- daily chemo drug. Given one pill mon-thurs and one 1/2 pills fri, sat, sun. Must be given one hour before food and two hours after food. So, we have had to cut out afternoon snacks to not totally have this rule our dinner hour.

Dex- steroid given in pulses to prevent cancer cell growth. Five pills a day for the first week of the month. 

Methotrexate- chemo drug of six pills (at one time!!) given once a week. 

Bactrim- pneumonia medication given twice a day only on sat, sun, mon.

We have a number of other drugs she may need, but these will be the staples for the next year and a half (approx). 

So, we have two that suppress the appetite, but one that increases it.a couple that cause drowsiness not to mention all the scary side effects they list with every drug. We just hope this is the right combination and that we can figure out how to remember all these drugs and different days and different quantities. Maintenance should be called parent doctors. 

Maintenance Mishap

Alexis went to the hospital today to start the next round of chemotherapy. This phase is called maintenance, but is still a little more rough than it sounds. She was randomized on the study to have the standard protocol. So, she is getting the exact treatment they know works the best while giving data to the study and having additional testing for her only available through the study. We were fine with this. Two arms had vincristine every month, which is the drug causing paralysis of her vocal cords, with less intense methotrexate, which causes the seizures. The other two are swapped...less frequency of vincristine, but more intense methotrexate. Since we the both, we didn't really have a preference. 

Her protocol has her on monthly vincristine, daily 6mp (for a year and a half!), steroid pulses every few weeks, and oral methotrexate once a week. They will tweak doses as they see how her body handles it. So, she got her IV vincristine. 

We then headed down to get her spinal chemo, which will also be part of her protocol, but she will get this every three months now instead of monthly. They heard some crackling in her lungs, so sent us for an X-ray. She has continued to have a little runny nose and sporadic, light cough since the RSV, but had been no fine. No temp, and they checked three times today, and her oxygen saturation was 100. However, the sound in her lungs and the X-ray that confirmed pneumonia had them concerned enough. So, even though she looks and is acting fine, they did not proceed with the spinal chemo. Instead of getting to go back in a month, we will be headed back in a week to try that portion again.

I guess easing in to the maintenance phase isn't the worst thig and playing things on the safe side is probably best with Alexis's history.  Now we just have to figure out the seven medications she is on! 

Shirts for a Cause

We have been asked several times about the Lexi’s Lollipop t-shirts. We have not sold them in the past, as we are truly blessed to not have to have done fundraisers yet. However, we ran into D the other day at the hospital and realized this is who selling the shirt could benefit. 

We first met D when Alexis was first diagnosed. At that time, she was in the hospital for two and a half weeks. During this time, D would stop by our room and say hi. He tried to make all the kids on the oncology floor smile and was so genuine and nice. There wasn’t anyone he wouldn’t talk to. After several days of him stopping by frequently, we began to observe that he never had family around. Not a parent, a grandparent, or a sibling. Occasionally he would have a friend that would stop by, but teenagers aren’t very good about that either. So, he spent most of the time in the hospital going through chemo and maybe other treatments with no one by his side. I can’t imagine having to face fighting cancer on your own. Such a great kid that didn’t let not having anyone there, or going through chemo, or having no money get him down. He has truly embraced his sickness and being on his own and doesn’t even seem phased by it. To have D’s strength is truly amazing. 

Well, we want him to know that there are people by his side. Therefore, we are selling Lexi’s lollipop tshirts to try and raise a little money to be given to him anonymously. We want him to know that being a great person and seeing the best in everyone does get rewarded. Plus, Alexis gets really excited to see people wearing her shirts. =) So, we get to bring joy to two cancer kids with this endeavor. Please let us know if you would like to support the cause.