I find myself less motivated to post as Addison's medical procedures decrease. She's been on Propranolol, a blood pressure medication, since this Fall. She takes it orally three times a day and she takes it like a champ. The only thing we have to becareful of is preventing side effect seizures by making sure she gets at least one ounce of food every six hours, day and night. I won't lie, I do wish I could sleep for a whole night through and I'm sure Addison would agree but soon enough. I Jan we will stop her Propranolol and she'll have a recheck at Children's on Feb. 15th. If we don't see any growth after stopping the med. we may really be done. Her face is pretty symmetrical now. Ryan and I can still see some puffing when we look at her cheek from behind but strangers don't notice anything. Her "strawberry" mark has defiantly lightened from a glossy red to a dull pink and we think it's getting more speckled opposed to solid like it was. Kids do still comment about what this mark is and I've come up with the following answer, "When she was leaving Heaven before she was born the angels kissed her, with lipstick! And they kissed you too but they just weren't wearing any lipstick." It usually quiets them and brings out a smile. At this point we can whole heartedly say we are so, so, so glad we chose to do the Vincrystine and I'm starting to really feel the warmth from the light at the end of the tunnel.
So after 13 weeks of chemo here is what is left of Addison's hair. She's got a pretty sweet combover that hang out on the left side. And a nice monk looking hair cut thanks in part to her scrubbing it off when she's falling asleep.
So what do you do with so little hair? Make a mohawk of course! That along with her PICC scar makes her one tough little girl. Thankfully our mailbox keeps being stuffed with hats. This one came from Pat and we love, love, love it. Now she's ready for the Kentucky Derby.
We bought this little beanie we accessorize with many different clips to match her outfits.
And look for pictures coming soon of a hat fashion show courtesey of Grandma Jodi and Pop Pop!
On Tuesday we took Addison's baind aid off, the last tether to her PICC.Her skin is still really broke down but it's healing. She'll have a little scar, where Ryan is pointing. But who cares scars make you look tough. She had her first submersed bath last night and LOVED it.
Well Monday was a big day for us. I noticed on Sunday that a corner of Addison's dressing was coming up. I called the home health nurses but the one nurse I trust wasn't there so I told them I would just change it myself. After I got to looking at it closer I noticed it was wet underneath and decided just to tape up the one corner and wait until Cheryl was back on Monday. So Monday morning Cheryl came over and changed the dressing. It was very smelly through the dressing, the hole was bigger and there was puss coming out of it. Her skin was really red again also. That morning we had to run to town and when I bent that arm, both on getting her in and out of her seat, she cried. I think it was because the triangle piece that is normally sutured into the arm was shoved clear into the hole where normally only the line goes in the hole. Before Cheryl redressed the site she called Children's and spoke with Renee, our chemo nurse. She said we could go to our local pediatrician and have a specimen taken of the puss and blood work done to see if there was infection in her body. I decided against that. PICC lines in little people are run of the mill at Children's, but here in our town I new they would be doing more guessing than anything. So off Addison and I went to Milwaukee at about 1pm. When we got to Children's Dr. Kelly looked at her arm and said the PICC line was telling us it was time to come out, between the line getting clotted up and her skin breaking down. So Renee pulled her line. Yipee! She placed some gauze over the hole and then gently pulled the line out. Addison just laid there without a peep. I was super excited about having her line out, I feel like I got my baby back. But at the same time it kind of makes me nervous. That PICC has saved us so many times. There was blood work, sedation, and numerous IV's that were given through it and saved Addison a bunch of needle sticks.
Here's what her line looked like. There was some tissue that had started forming near the end.
Addison is really good about her arm being messed with. Even after they were done she just kept her arm still laying out. Renee put on a hot pink band aid. Addison's chemo nurse Renee and a nurse who helped hold her arm.
Dr. Juern (Anna), standing, and Dr. Drolet. Dr. Drolet said that the plan is to just wait and watch for now. No more medication until we see a significant growth reoccur. And Dr. Drolet does expect it to regrow since we are still in the growth period, until 9months old. At that time they will put her on Propranolol an oral blood pressure medication. Can you believe it, no more chemo and for the time no more medication or Dr. visits! It's been a long journey and we're not done yet but that light at the end of the tunnel is getting brighter.
I've been slacking here for a few weeks. There's not much visable change to Bettie since her second MRI on week 7. Today, we had her last MRI, yippee. We had a new anesthesiologist who wanted to use a different sedation than she had the last two MRI's. The tech told me because of the new med I wouldn't be able to hold Addison until she fell asleep. Umm what? I was pretty nervous. During her first MRI not holding her was a nightmare as she fought the drug. But my worries went unfounded when within seconds of the sedation being pushed her eyes grew heavy. She did great through the whole thing. She did start kicking during the end which made us a little uneasy, but she stayed asleep. It took her forever to wake up though and the sedation was shorter acting than the one she had before. That doesn't make sense but whatever. She slept on and off the whole time we were at Children's and the three hours it takes to drive home. We were at the hospital for a very long day. After the MRI we had our regular appointment in the Hot Clinic. They couldn't get her PICC to return blood which is bad. They always make sure she has blood return to make sure the line is in the appropriate place. If not the Vincristine could eat her tissue causing scarring. So after a bunch of fiddling they put TPA, a clot busting med, in her line and let it sit for thirty minutes and tried again. Yes, success! Renee, our nurse, thinks a clot probably formed at the end of the line. We could flush it because the fluid pushes the clot out and when you draw back the clot "flaps" over the end of the line making it impossible to draw back any blood. So the TPA blew threw the clot and once again made life happy. Little hiccups like this always make me a bit nervous. Addison's arm looks a lot better today. On Wednesday I had to have the home health care nurse come and change her dressing. She had been picking at it and I thought she was just discovering it. However, on Wed. morning when I went to flush it I noticed one corner was completely loose and her skin underneath was all red. When the nurse changed the dressing it was soaking wet underneath and her skin ripped when it came off. The nurse speculated that her arm was weeping and causing the dampness. And I'm guessing that's why she was picking at it all week. It probably itched like the dickens. Poor little kid. Anyway, today her arm looked fabulous and not weeping. So we are once again on the road to a better place. But all these are signs that it's getting near time to have her line come out. Dr. Kelly said they would review her MRI on Monday and then call us with a tentative plan of what treatment we are doing next. Her trial was only for 12 weeks and now we need to come up with a plan of action from here on out. Dr. Kelly is thinking we will probably start her on Propranolol, a blood pressure med, which will control the growth. Down side to that is it can interfere with how the body metabolizes blood sugar and can cause seizures. They would hospitalize her for a few days when they first put her on it and check her blood sugars. Additionally, he said if we do go that route they would give us some tips on how to stabilize her blood sugars which include waking her up to feed at night. NOOOOOOO. I just barley got her to sleep through the night again after her RSV hospitalization busted that routine. But, we will do whatever it takes. I am a bit nervous but like I said to Ryan it'll probably be like this whole situation has been. Everything has sounded super scary and complex but as we settle in and it all become a crazy sort of normal it's not so scary and I look back and wonder why I fretted so much. So that's where we may be headed. We will know more on Monday after her team reviews her progress and the MRI.
I can hardly believe that she had her tenth dose on Friday. I actually thought it was her ninth but then I looked at her wall and sure enough there were nine little quilt blocks representing the nine weeks that have gone by. I had to go look at the calendar to make sure it really was the tenth dose. The day we decided to undertake this treatment the tenth dose looked a million miles away and now here we are just two doses away from the end of her trial! After the twelfth dose we will begin to go every other week and if it holds off the growth then we will try and go every three and then just once a month. We will keep spacing treatments out as long as regrowth doesn't occur. Cross your fingers!
This week Addison's arm, under the dressing, looks much better. It's hardly red and it's just a bit dry. They repositioned the dressing to see if they can get part of the skin to heal up in the open air and next week will reposition it again to heal up another part. On Monday and Wednesday the home health care nurse came and put a new dressing on and applied a steroid. The steroid made all the difference in the world.