Ok so where to begin. I guess we go back to March. The whole winter seemed like one doctor appt after another and March was no different. First Timmy, Lauren and I all got knocked down with a good case of Strep throat. Then we were still working on Tim's ear problem. The ENT had called us in to go over the results of his hearing test. There was an abnormal result on one of the tests on his left ear. The doctor wanted a very specific test done; an ABR (auditory brainstem response) test. Of course I asked what he was looking for and he said I think Tim may have a benign tumor between the middle ear and the brain. Needless to say I was shocked! And poor Tim - all he heard was tumor and brain. He thought he had a brain tumor! (Looking back on it now we can laugh at that) Well we went for the ABR and thankfully everything was normal! We dealt with a wonderful audiologist who even ran some extra tests and everything was fine. So there was no reason found for the ringing in his ears but he said "I can live with that - it's better than a brain tumor!!
Two days after that wonderful news Lauren went to the orthopedic to check her back. We were 2+ months early for her yearly but she had been complaining more and more of back pain (especially since stopping physical therapy in Sept). And even though everyone thought it was my imagination - I thought she was hunching over more. Well x-rays showed that her kyphosis (forward curve of the spine) had gotten worse. The curve had been staying around 58/60 degrees for a few years but had now progressed to 65. Dr Reiger said that it was now at the point where we had to do something to try to stop any further progression. If it progresses to 75 degrees then we're looking at surgery to fuse her spine. She is much too young to do that now. She would end up as an adult with the chest size/capacity of a 6 year old. So he decided to put her in a back brace to try to halt or at least slow down the progression. I asked point blank if he really thought this could work or were putting off the inevitable. His answer was "both" He thinks it will really help right now while she is slowly growing. The brace should be able to keep up with that growth. But if and when she has a large growth spurt (as in the teenage years) then even the brace may not be able to stop the progression of the curve and she would need surgery. He said we'd just have to wait and see. As long as it's working she'll have to wear it for the next 10+ years - until she finishes growing. As you can guess Lauren was none to happy about having to wear a brace especially when she found out she would have to sleep in it. To tell the truth I wasn't any happier about it. And yes I do realize that in the big picture this was nothing, especially compared to what she had already been through. And yes I am thankful that she is still here to go through this. And yes I know it could be worse. I do know all that but that doesn't make it any easier when you first get news like this.
So we spent the next few weeks back and forth to the orthodics place getting measured every which way so they could make her a custom brace. We picked it up in early April and over the next two weeks she worked up to wearing it every day for 23 hours. She has had to adjust to certain things like not being able to bend at the waist, rolling to her knees to get up from lying down etc. It's hard for her to get into or up from certain positions but she's doing great with it. We did have to take her out to get a whole new wardrobe because none of her clothes fit over the brace. She is only supposed to take it off for an hour a day to bathe but we've had to make some concessions for gymnastics, dance, water gun fights and swimming. The bad thing about the brace is it's hot and can't get wet. Lauren has to wear a special thick tank shirt under it at all times to protect her skin, then her clothes over the brace. All these layers don't let much air through plus add to that her issues of hot flashes/overheating - makes things pretty uncomfortable! Should be an interesting summer!
Also in April Lauren had a checkup with the neurologist. He did agree that the chemo she had could cause some of the issues she had like the Raynaud's and peripheral neuropathy but there's not really anything we're going to do about it. He said the only way to really know about the neuropathy is to do nerve testing but he and I both agreed this was not worth doing. She has only intermittent mild pain - it is more of a nuisance thing. He did a full exam and found that her reflexes are a little slow (on a scale of 1-4 she's a -2) and that she couldn't track with her eyes all the way to the left. He didn't seem too concerned though. We talked about her headaches and because of the cancer history he wanted Lauren to get an MRI. He wanted to rule out any changes in the brain due to chemo. We first had to make sure all the metal in her was safe for an MRI and it was (gotta love titanium!) and we finally did the scan at the end of May.
I just got the results yesterday. Well actually the doctor left a message on my answering machine Friday afternoon saying that there were "no significant findings" however he would like to discuss an "incidental finding" with me so could I please call on Monday. What a thing to do to a parent over the weekend! I finally talked to him last night (through the haze of post anesthesia and narcotics!). The "incidental" finding is something called Chiari malformation and is a condition in which the cerebellum portion of the brain protrudes into the spinal canal. Major symptom - headaches!! Correction - surgery!! Uggggggg!
BUT the reason the neurologist doesn't think this is the cause of Lauren's headaches is because he feels that her headaches would be much more severe and debilitating and they should be at the back of her neck (hers are the top and top back of her head). And even if this were the cause that because hers are so quick to pass and she has no other symptoms ? (still looking into this) we wouldn't necessarily have to do anything. If her headaches get more frequent or intense then he wants us to have an mri of the spine and to talk to a neurosurgeon. I figure what I'm going to do is get a copy of the MRI report and bring it with me when we go in to Sloan for Lauren's scans in July. If need be I can always get a second opinion while we're there.
In between all the orthopedic and neurology stuff Lauren also had a visit to the pulmonologist where, thankfully, eveything looked fine. Yeah! We don't have to go back til next year. And also a routine trip to the dentist. Good news was no new cavities another Yeah! - but we found out the Lauren is missing 12 adult teeth! Probably from all the chemo she had. She's missing all 4 adult premolars, all 4 2nd molars and all 4 3rd molars (wisdom teeth). The dentist said this should not be a problem though. She probably won't ever lose her baby premolars so there won't be any gaps that we need to worry about filling in. At least she has all her adult 1st molars - they came in 6-8 months ago and look fine. I said looking on the bright side at least she won't have to worry about impacted wisdom teeth LOL
OK that's enough medical talk for now. Both Timmy and Lauren have been doing a ton of stuff in between all the doctor visits. Tim is still doing karate and he's almost up to a brown belt. He's also playing baseball again. It's a little different than last year in that the kids pitch this year instead of the coaches. It took a little getting used to but he's doing great though he'd really like to be able to argue with the ump sometimes! This year he's been playing first base and catcher. He's finishing up with 4H this week with a trip to the Franklin Mineral Museum. Bill went with him last week on a river walk/hike to Tillman's Ravine with his AEP class. Tim came back soaked but I'm not sure who had more fun!
Lauren is still doing gymnastics and dance and also started soccer this spring. She had a great time playing but her favorite was finding out what kind of cookies they got after the games. In her division they only play four on four on a shortened field and they don't use a goalie. Since Lauren would tire from running her favorite position was defending the goal. She thought she could just twirl around the goalpost and wait for the ball to come to her!
Lauren's dance recital was the Saturday before last. Yes I will get pictures up soon! She looked so cute in her costumes. She had one for tap and one for ballet. Both sets of grandparents, Aunt Nean & Uncle Dylan, Bill, Timmy & Jen came to watch. The show was great and Lauren had a blast. It was a long night and she was tired but not too tired to have pizza with Jen when we got home!
Last week Bill, my mom and I went into school for Lauren's class play "The Little Red Hen". Lauren was a cloud and what a beautiful cloud she was! The room was so hot I was afraid she would wilt but she hung in there and belted out all the songs!
Lauren's birthday was Thursday the 10th but we had her birthday party on Saturday at the gym she goes to for gymnastics. There were 13 kids running, tumbling and having a ball! And of course a princess birthday cake! It's hard to believe she's 6 already!
Then this past Sunday Tim competed in the Soap Box Derby in Port Jervis, NY. He drove Uncle Mike's Indian Acres car. (Jen drove it last year and Devon the year before that). There were 64 stock cars and 47 super stocks entered which made it one of the biggest SB derbies in the country. Tim did great and had a blast. He got to race 3 times (6 times down the hill) before he was eliminated. After a full day at the race (the guys were there from 7:30 am and awards were finally done at 6pm) we all headed over to Mike and Val's for dinner.
And that brings us up to the present! The kids are excited that this is the last week of school. Well it really ends on Monday the 21st but for them the last day is Friday. On Monday we'll all be heading up to Maine for a week at Camp Sunshine (http://www.campsunshine.org ) This is a camp for children with or that have had life threatening illnesses but unlike other camps this one is for the whole family. The week we will be there is for oncology/bone marrow transplants. I was a little unsure about it at first because Lauren is no longer in treatment but they want families from all phases of treatment to be able to share experiences. We are really looking forward to just getting away, slowing down and relaxing.
Well I'd better wrap this up - I need to get Lauren over to the Fire House for her soccer awards. After that we'll run over to catch the end of Timmy's baseball game. It's the first game of the playoffs. Then I'll be heading off to work. Whew it's gonna be a long night! :-)
Lauren and I will be heading to Sloan the week of July 12 for a week of checkups and 6 month scans. I've been too busy to get anxious about them yet but I'm sure as it gets closer I will. Hmmm maybe by the time she's 10 years out I'll get over the pre scan jitters
I'll close by saying a big Thank You to all of you who keep checking in on us no matter how long it takes me to update :-) and for keeping my little angel in your thoughts and prayers. Bill and I truly appreciate it. More than words can ever express!
