Lauren was not a happy camper when we first got to clinic on Monday because she was dreading the "poke" for the IV. She was a real trooper though and even though she screamed she held very still. She was a little upset when she realized that they had to pull the IV yesterday and she has to get a new one on Tuesday. She kept telling the nurses..."its a good line...we can keep it in...I won't go swimming when I'm home".
Unfortunately the line didn't draw as well as it infused and Lauren had to get another "poke" after antibodies on Tuesday for bloodwork. She definitely did not appreciate this and even in her drugged state let everyone know!
Lauren's been having fun at the RMH this week. They had a special after hours trip to the Children's zoo Tuesday night. The kids had the zoo all to themselves and got to run around. In the petting area the zookeepers had bags of feed so the kids could feed the goats, sheep etc.. Some of the kids didn't want to go near the animals but not Lauren, she had to make sure she fed every single one of them! She had a blast. The weather was so nice that we walked back to RMH instead of taking the van. Then we met up with some friends at a pasta dinner that the house had put on. Wednesday they had another donated dinner and then Bingo. Lauren had a great time helping her friend Bruce call the bingo numbers. She made friends with all the volunteers and even asked a couple of them to come home with us!
We've been able to catch up with some friends from previous rounds and meet some new families. Lauren was happy to see her friend Hannah again. Though they're not roommates this time around, the girls had fun playing together at the house.
Bill and Timmy got to spend some time down at Grandma & Pop Pop's house this week. While Bill was at work, Timmy got to do some fun stuff. He and his cousin Melissa went to the park to ride the bike trails. And he and PopPop went to Gateway Farm where Tim got to ride in a sulky with Mike (one of the horse owners). They went around the half mile track 3 or 4 times. I hope the pictures come out because Pop Pop said Timmy was grinning from ear to ear!
It's hard to believe that summer is just about over. Timmy is looking forward to starting school on Wednesday and seeing all his friends again. Now that he's in first grade he'll be going all day. A big difference from the half (2 1/2 hour) days of kindergarten. Lauren too is looking forward to school. She'll be starting preschool when we get home from this round. She is so excited. She walks around the house wearing her new PowerPuff backpack! I'm sure I'll be a basketcase the first day. Thinking back to last year this day seemed so far away! Another little step in the "normal" direction!
We don't have to be back at clinic til Tuesday because of the Labor Day holiday so Lauren will only have to have four days of antibodies next week instead of five. We're going to enjoy a quiet weekend at home then head back to RMH Monday morning (hopefully avoiding the holiday traffic!)
Have a great weekend everyone! Thanks for keeping us in your thoughts and prayers!
Sunday, September 16 - I know this update is overdue but with the events of this past week I just haven't been able to clear my head enough to sit down and write. I am so overwhelmed (as I know everyone is) by what has happened. Thankfully Lauren & I were not in NYC when the disaster struck. Originally we were supposed to be but I had moved her last round up by a week so she would start preschool on time. My father and brother, as well as friends, were in the city but thankfully they all made it home safely that night.
Lauren finished Round 6 without any major problems. She was happy that it was a short week with only four days of treatment. After antibodies on the last day she also received the next three vaccines on the revaccination schedule. To make it easier on Lauren, we had three nurses each with a syringe, count to three and give the shots at the same time. She was not a happy camper but thanks to all the pain meds already on board, she was upset for only a minute or two.
This last time in the city was a hard one for me. Not because of anything going on with Lauren but because of things with friends that we have made there. I found out over those two weeks that 4 of Lauren's friends, children that she has been doing antibodies with, have recently relapsed. They have all been started on new courses of treatment that I pray brings them back to NED status very soon. I was talking to one of the moms and saying that I was just getting more comfortable with our new level of normalcy and this is like a reality check reminding me that this fight is a long, long haul and will never *really* be over. While I will not live my life constantly awaiting a relapse... the fear of it is always there.
The Sunday before we headed back to the city Lauren and I went with Aunt Nean to a dog show at the local fair grounds. We got to see some of Aunt Nean's online friends again and Lauren got some big wet kisses from her old buddies. She was in a great mood and had a good time rooting for Bravo and Kayla. She also walked around and petted (always asking first) Great Danes, Boxers, Bull Mastiffs and of course lots of Labs. At one point Corey gave Lauren her "number" armband and Lauren announced that she was ready to show. She said..."I have a number...now I need a dog". She did get a chance to pretend show with a sweetheart lab named Leo. She stood him up for a "judge" to look him over then "ran" him up and back. It was so cute to watch and she such a blast doing it. When we left she asked Aunt Nean if she could "borrow" one of her dogs for a sleepover. LOL
Lauren started preschool this past Monday and is really enjoying it. I think I had a harder time leaving the first day than she did. She gets to take a little school bus home from school and loves it. When she got off the bus the first day she had a big smile on her face and said "Mom! I only missed you twice today!" She goes three days a week (Mon, Wed and Thurs) for 4 hours. Gee... I guess now I'll have no excuse for not cleaning my house!
Lauren started back at PT this week too, on Tuesdays and Fridays, so she really has a pretty busy week. This was evident at PT on Friday. She's not used to running around and doing so much that by Friday her muscles were pretty well spent. Her mind was still going strong and she wanted to do all the playthings at PT but her muscles were so fatigued that they just wouldn't/couldn't cooperate. This leads to some meltdowns and frustrations. It will take a little while but eventually she'll get stronger and be able to do all the things she wants.
We are awaiting news this week to see what's going on with our trip to Disney. After everything that has happened this past week we need to see if our airline will be up and flying by the time we're scheduled to go and if our flight is still scheduled at all. Will let you all know when we find out.
I hope this update finds you all well and safe.
As always, thanks for checking in with us. Your thoughts and prayers are always very much appreciated.
Saturday, September 29 - Just a quick update to let you all know that we're all doing fine. Not too much to report on. Happy to say that Lauren finished up her 6th and final cycle of Accutane last week. Once again her skin really took a beating but is now finally starting to heal. We made a really big deal on the last day and she was doing "the Happy dance" around the house singing...No more Accutane...No more Accutane.
Lauren had a check up at the Valerie Center this past Tuesday. Her counts look great, she put on another pound and even grew an inch or two. We drew blood for the HAMA test but because we drew it on Tues instead of the usual Monday (I didn't want her to miss school) it didn't get to Sloan in time for this weeks test. So I won't have HAMA results until sometime next week. I'm not getting my hopes up for HAMA + because I don't want to be disappointed. Assuming she is still negative, round 7 of antibodies will be Oct 15 - 26. She'll be having her 3 month scans/workup during this round too.
Lauren is really enjoying preschool. She loves her teachers and looks forward to going. When she gets up in the morning the first thing she asks is "is today my school day?" She's still going to physical therapy twice a week and we can really see some improvements. She's definitely gaining muscle and is able to do more things and is much more coordinated tho she still fatigues easily. We still have a ways to go but we're definitely moving in the right direction.
Last Sunday the kids and I, along with my brother Gary & neice Elizabeth, went to see the circus. It was a small circus at the fairgrounds. We met up with Sharon, Joe, Sierra & Cheyenne and had a lot of fun. The girls rode the ponies and got their faces painted (well Lauren got her arm painted because of the sores on her face from the Accutane). It was a nice day with lots of smiles and laughter.
Well that's really about all for now - thanks for checking in.
Please know that we really appreciate all of your thoughts and prayers
