February IVIG Infusion

After a year and a half of these infusions you would think we would have the routine down.  However we switched brands of IVIG a couple months ago and I guess it has just now caught up with him and today was spent with lots of tummy aches and vomitting.   Mommy was not prepared for enough outfits for either one of us.  We have escaped much of the nausea up until now, so after playing around with some anti-nausea drugs we will now be adding it as a regular premed so we don't have another day like today.  We were very ready to get home tonight and take showers....

All boy...

Virus Free

Max's virus testing came back clear this last week,  the very minor cough that he had seemed to taper off and no additional symptoms appeared so we are good.  There are so many respiratory viruses going around right now, if you or your family is suffering from them,  we are sorry.  We have been soo lucky not to have been affected by too many viruses this year and with three preschoolers this is a true miracle...  Please don't be offended if we aren't attending as many functions as we normally attend.  There is just so many bugs out there right now and apparently the actual flu virus hasn't even hit yet so we are in for a late flu season.  Luckily Max is so good about keeping his hands clean and not touching his face or putting things in his mouth, God has blessed him with a clean gene.  We know so many parents who have pulled siblings out of school while on Rituxan, and put their family on lockdowns, but after discussing this option with our doctors and Madison's preschool teachers we have decided to let her continue to attend, they are great about letting us know if there are bugs going around or even something scary and then we can call the doctor and make the call whether to send her or not.  The girls have had to give up so much this year, we would like to allow them to have some fun when they can.  They have all been so helpful to keep our house germ free.  Madison is in charge of spraying lysol on all of our doorknobs and light switches everyday and Max and Molly are professional wipers on all surfaces they can reach.  I have even caught the girls putting purell on the hands of their baby dolls. =)

Chemo #4



After an exciting morning, exhaustion set in

Sorry for the delay in getting these posts up.  Max had his fourth treatment on Monday and we had a busy day planned,  the team wanted Max to have another appointment with a specialist in the afternoon so they were hoping that we could shorten the infusion time to make it a shorter day and allow us to get in and see this specialist who usually has a 6 month waiting list to get in to see him.  When we got to the hospital early in the morning we got everything going pretty fast, but our team hadn't communicated to the nurses or oncology pharmacist the infusion rate that needed to be kept in order to cut down Max's time, so there was some discussion about the rate.  After getting our premeds and clearance from the hospital to get an exception to shave a few hours off,  the infusion commenced, they turned up the rate and we settled in for a long day.  However, within a couple minutes of turning the rate up Max started to cough a couple times and then started gagging like he was throwing up, I turned around to grab the vomit basin and then when I turned back around it seemed I had the whole unit in our room, at the time I didn't realize what was happening but all the doctors and nurses knew what to be looking for and knew what was going on.  Max's stats were dropping and he was having a reaction.  It seems his throat was closing on him from the infusion, I guess this can be common, but it came on so fast I wasn't expecting it to start with just one cough.  He didn't even have time to tell us what was going on and of course he was so scared he couldn't even point or show us what was wrong.  Luckily they had oxygen handy and a shot of epinepherine close by to help, they also immediately shut off the infusion.  We had a little scare, but after some observation time and lots of discussion whether to continue the chemo, we decided on the new premeds to be given to try to protect against this in the future and then we gave it another try,  I guess Max is a low and slow kinda guy,  I cancelled the rest of Max's appointments, and they kept us for observation until the unit shut down for the evening at 7pm. The rest of the day went much smoother.



Corndogs make everything feel better for a two year old....



Hair...

We have had lots of questions about hair loss during this round of treatment.  The Rituxan doesn't usually cause complete hairloss like other chemo drugs since we are trying to target a very specific cell line, but with the additions and increase of all his other meds, Max has experienced a bit of hair thinning and loss. He was losing it in his bed and when you ran your fingers through it it would come out, it was also pretty itchy for him so we have been keeping it cut short to keep it from getting too annoying.  He has a few bald spots but with his light, fine hair it isn't too noticeable to the general public, it also helps that he is a boy and can sport it well.