I hope everyone had a great holiday season. We sure did although, as usual, it went by really fast! As is our tradition, we spent Christmas Eve at my parent's house with everyone. Then had the day at home with Grandma & Grandpa, Gary and Elizabeth over for dinner. The kids had a blast playing with all their new stuff. They were having so much fun that Elizabeth decided to sleep over so they could continue playing well into the night. The Sunday after Christmas we headed down to Bill's parents house for a few days. Mom had a little xmas party when we got down there Sunday afternoon. It was great to be able to visit with everyone and the kids had a great time playing with their cousins (Davey, Patrick, Madison and Melissa - who was home from college). We had a fun, relaxing three days and as usual PopPop made sure that no one went away hungry. While we were down there we were able to have a short visit with my cousin Donna and her family. Once again the kids had fun playing with their other cousins (Lake, Brooke and Trent).
We came home on New Year's Eve and spent that night, as we usually do, quietly at home watching movies with Aunt Val, Uncle Mike and Devon. Lauren was very excited because this was the first year she stayed awake to watch the ball drop. She tried last year but didn't make it past 10:00 so she was determined to do it this year. It took a bunch of well placed pokes and tickles but she did it. Timmy and Devon on the other hand had no problem staying up and we finally got them to bed around 3!
As I said the holidays went by fast but I'm glad we had the chance to see and visit with so many friends and family. It seems that as fast as time goes by we just don't get to do it enough!
Now the kids are back in the swing of school and after school activities but medical wise January has been a little rough. Nothing real serious - just one thing after another and lots of doctor visits. Timmy has been dealing with two problems - tinnitis (ringing in the ears) and recurrent heal pain. A trip to the ENT found nothing wrong with his ears so he has a hearing test set up next week to rule out any problem with that. The doctor explained that a lot of times no reason is found for the ringing and you just kinda have to deal with it. A trip to the orthopedic for the heal pain diagnosed something called Sever's syndrome/disease. This has to do with the growing area at the back of the heel bone where the achilles tendon attaches to it. It's relatively common in kids especially those in sports and the good thing is that it usually disappears once growth is complete (at around 16 yrs - only 7 years to go!). Right now Tim has to do calf stretches 3x a day for 10 minutes to help trick the muscle into growing faster to alleviate the pulling on the bone. Once the main trauma is gone he'll have to do them once a day every day to hopefully keep it from coming back too often. So far the major pain has gone so no more limping but the doctor can elicit a pain response by squeezing in a certain spot so we go back again in Feb for a recheck. Then on top of all this he was laid up for almost a week with a nasty case of Strep throat.
Lauren was doing great till Wed Jan 7th when she crawled into our bed at 5am with a fever of 103. The next day it was up to 104 with a croup cough so we were off to the doctor. Thankfully her chest was clear. They said it was viral (possibly the flu) and that the fever could last 5 or 6 days and to come back if it persisted after that. Well on day 7 she still had 101 so back we went. This time they said she definitely had the flu and now also secondary pneumonia so we got 10 days of Augmentin. The doctor said if Lauren had a normal medical history he would have left it at that but since she doesn't he ordered chest x-ray, blood cultures and CBC. She was not happy to have to get blood drawn and told the guy at the lab he'd "better not do a lot of pokes". Well it took two techs 30 minutes and thankfully only two pokes to find a good vein. The doctor was surprised when the chest x-ray came back clear but explained that we caught it early before it had a chance to consolidate enough to show up. After 2 days of the antibiotics Lauren was feeling much better. She had already missed 7 days of school and was happy to go back on Friday when her class was having a pajama party. She got in that one day of school then missed four more because the next week she was scheduled for her 3 month scans.
Everything went fine in NY. PET scan still all clear! Yeah! Since Monday was a holiday clinic was packed and it took a while to finally see Dr Kushner. By the time we did he had had a rough day (2 or three new families) and was so happy to see Lauren. He told her she was truly the bright spot of his day. After he checked her out he just sat back and watched her bounce around. He said it was so great to see one of his kids doing so well. So well in fact that he extended our scans out to every 6 months!! I had an idea that this was coming and I kept going back and forth about if I was ready to do it. While it's a great step, it's also a scary one. Finally I accepted it and figured they're just a phone call away if there's a question and I know they would see her in a minute if something came up. So as of now we don't have to go back until July!
Lauren also had a checkup with Dr Sklar this visit. He's the long term follow up/late effects dr. that we see every 6 months. He also said she looks great. She did grow some - she's up to 44 inches now and most of that is in her legs. She did drop a little on the sitting height curve (on which she was low to begin with). Sitting height measures growth in the trunk area. Because of the amount of her spine that was radiated this is an area that they have to watch and we were warned that Lauren would probably not grow normally there. But it will take a while longer to know just how much of an issue this will be.
Dr Sklar thinks that the overheating/hot flashes is a result of nerve damage along her trunk from all the surgeries and there's really nothing to do about it. He said you could deaden the nerves but that's a radical step that she could decide to do when she's an adult. Lauren also has an issue where her feet and/or hands turn blue, He said this could be something called Raynaud's syndrome and could be caused by one of the chemo drugs called Vincristine and once again nothing you can really do for it. This drug can also cause peripheral neuropathy (more nerve damage) which could explain some of her leg and foot pain. With all this nerve stuff plus the fact that she still gets the sudden short lasting headaches (about a year and a half now) he wants Lauren to see a neurologist. Just to have a good "once over" and make sure everything is fine. She hasn't seen one in 4 years (the day before she was diagnosed) so I'm curious to get their take on things. He also wants us to go back to the orthopedic before our yearly visit in May. Lauren's back has been hurting a little more lately and also to check out a little left head tilt thing that she's been doing for a while now. (Probably just some more tight muscles) On top of the neurologist and orthopedic we also need to go back to the pulmonologist. We had tried last year to get a baseline pulmonary function test but Lauren wasn't able to do the whole test. It's hard to explain to little ones how to blow all the air out of your lungs. They're hoping that now that she's a year older she'll be able to do it.
Well we may not be seeing the NY doctors for 6 months but we'll be seeing plenty of others in the interim. Maybe that's another reason I'm ok with stretching out the visits!
Wow this turned out much longer than I planned so I think I better call it a night before I ramble on too much more. Oh I do have to add just one more thing. A big Thank you to Patti Elich for starting my kids on a new hobby - Ping Pong! She had given us a ping pong table she wasn't using anymore and we finally got it set up. The kids (especially Bill) have been playing almost every night!
As always thanks for checking in on us - we really appreciate all the continued thoughts, prayers and good wishes. It's hard to believe that this Sunday (2/1) will mark 4 years since Lauren was diagnosed with cancer. Please know that it's been all these thoughts and prayers that have helped us all along the way. I hope you all know how much that means to us.
