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Tayler Updates Courtesy Of The CaringBridge
Friday, June 19, 2009 11:06 PM, CDT
I hope this finds everyone happy and healthy.
Two quick notes before the normal update...
1) Tomorrow Tayler will be walking in the Parker Country Festival parade. She will be walking with the Parker Relay for Life team. This is a group that coordinates the annual Relay for Life (an event in August) through the American Cancer Society. If anyone wants to come and see her in the parade, here is the info:
When: Saturday, June 13th at 10:00am
Where: NE corner of Parker and Main Street - the parade goes down Main through Old Town
Parker then loops around Victorian Dr.
2) Don't forget about the fundraiser for Tayler coming up on 6/27 at The Wildlife Experience. See www.taylerisatreasure.org for details and to get tickets.
Tayler has been doing well this past week. The major events have been one more platelets transfusion this past Monday and Tayler throwing up her NG tube...again. Shane and I were taught how to reinsert the NG tube and have had to do it once here at home this week.
Her counts should be high enough for her to start chemo again on Monday. The only piece that needs to be higher for her to start are her platelets.
Tayler has been in good spirits and has enjoyed playing inside and outside when weather permits...you know, no hail or tornado.
Tristen is also doing very well. He is fine tuning his standing skills holding nothing and he is looking like he wants to start walking. He cruises around furniture easily and his teeth are coming in like gang busters!
Keep your fingers crossed that everything goes well next week during chemo! We will write more soon....
Love,
Alena
Saturday, June 6, 2009 11:53 PM, CDT
Hello,
Before we get to an update, we want to let you all know about an upcoming event. Some of the members of the ladies group in our neighborhood are putting together a fundraiser for Tayler!
The event is on June 27th from 6pm- 10pm and is being held at the Wildlife Experience.
It should be a great time! For details and to purchase tickets in advance, check out the website at www.taylerisatreasure.orgNow on to the update...
The side effects from last week's chemo kicked in and Tayler had to have 2 platelet transfusions and a blood transfusion this week. Her counts started very high at the beginning of the week then dropped drastically. Tayler has also been very tired this week, she is throwing up a lot, and has a few mouth sores that we can see. We also think that she has some sores down her throat. Not anything like the mouth sores she had with the first two rounds of chemo, but they still don't feel good. Hopefully she already hit her low point and is working her way back up. If everything goes as it has been, Tayler should rebound around midweek next week.
The other excitement around here has been with Tayler's NG tube. On Tuesday Tayler threw up her tube and had to have it reinserted Wednesday. Needless to say this is not a fun procedure and Tayler wasn't happy at all about it. It definitely is easier to have it come up than to get it back down.
After Wednesday, all was well with her NG tube until today. This morning Tristen was playing with Tayler and accidentally grabbed her tube and pulled it most of the way out of her nose. She was very upset, but we got her calmed down and since it was just pulled out of her nose Shane was able to thread it back in. Again, not fun, but Tayler recovered quickly and went back to playing. Late this afternoon we had one more episode with her NG tube when she threw it up again. When she throws it up we can't do anything other than cut off as much as is hanging out of her mouth and pull the rest out through her nose. I spoke with the on call Dr. and they are ok waiting until Monday to put the tube back in so Tayler will have a short break from it. I've said it before, but I wish she could just eat and not need the tube. She isn't eating for a number of reasons (her mouth hurts, everything tastes weird because of the chemo, she is nauseous etc.) and this is not the battle we will fight right now.
So now that I've made it sound like Tayler had a terrible week I have to say, she really is doing remarkably well. Tayler has been in good spirits and is playful as always. She is such a happy kid. And even though Tristen pulled her tube out, Tayler loves playing with him. Tristen is always so happy to be around Tayler. It is obvious how much they love each other.
On the Tristen front, he is FINALLY getting his first tooth. I think he has been teething for about the past 6 months (ok, so I'm exaggerating a little...just a little) but his bottom right tooth is coming through. He is also practicing standing without holding anything and working on going down the stairs backwards. Tristen is also learning to make faces that crack us up! He puckers up his lips, squints his eyes and raises his chin up until his little face is pointing towards the ceiling. He then looks at us and laughs. He is such a ham :)
In spite of everything going on, I still feel so blessed to have my family. I wouldn't trade them for anything. Now let's get on with making sure our precious little girl is 100% healthy!
Tayler~ I know that the tube coming out has been cruddy, but you are getting through it. It is so much fun watching you play with Tristen! I also love hearing you sing. Today it was your own version of "Somewhere over the Rainbow" which included a verse on fairy dust. You also told me tonight that you were going to have 4 babies when you grow up. You told me that you would name them: Princess Aurora, Tinker Bell, Silver Mist, and Iradessa. You have such a great imagination! I love you very much sweet girl!
MommySunday, May 31, 2009 1:31 AM, CDT
Hi all,
One more week of chemo down...lots to go. As planned, Tayler began this round of chemo this past Tuesday. The unexpected part was that her blood counts were still not high enough for her to participate in the study for the anti nausea medication. Oh well. Tayler's nausea really hasn't seemed any worse this week than usual so at least it's not going in the wrong direction.
Tayler did very well with her treatment this week. She even had enough energy to play each day while at the hospital and at home. Tuesday Tayler joined a creative arts therapy play group where they bounced on a big ball, painted with paints, then finger painted directly on the table with shaving cream. She had so much fun and really enjoyed playing with other kids with "naked heads". Tayler even met a 4th grader with a brain tumor who is just starting treatment and was able to give her words of encourament. It was amazing to watch Tayler talk to a girl twice her age and empathize with her while reassuring her that some procedures were not as scary as you think (such as getting your PICC line out). I've said it a million times, but Tayler is such an amazing kid....
Tayler got her NG tube back in Tuesday right before we left and wasn't in the greatest mood after that, but I can't blame her.
Wednesday's treatment went well too. She again played a ton then relaxed and watched a movie before we went home that day. Tayler fell asleep around 6pm for what we thought would be a short nap. It seems that her fatigue set in because she ended up sleeping until the next morning when we had to drag her out of bed to go back for another day of treatment.
Thursday was a fairly short day at the hospital and she again did well playing and watching a little TV while she was there. Thursday night Tayler even felt up to having a play date with her friend Emma. They played for hours and had a blast!!!
Hopefully Tayler will continue to feel well and can have more of these great days/nights.
Friday, Tayler got her neulasta shot to help rescue her white blood cells. She doesn't like shots (who does???) so that was not a fun adventure, but it was over soon enough and she was able to just be at home the rest of the day.
Now that the weather is nice we have been able to get outside a number of times and Tayler even rode her bike and drove her electric John Deere this week. Of course she tires out about half way around the cul de sac, but she has fun. We have been trying to take the kids on walks in their little red wagon and enjoy the beautiful weather.
Next week Tayler has check ups Monday, Wednesday and Friday with the possibility of transfusions any time her blood or platelets go too low. This upcoming week is also when the side effects of this week's chemo will really hit her so keep your fingers crossed that #1 the chemo continues to work and #2 the side effects are manageable.
I hope you all have a great upcoming week!
Alena
Tayler~ One more week down kiddo! Can I just tell you how incredibly sweet you are with me, Daddy, and Tristen?!?!?! You are my inspiration, my hero, my sweet baby.
I love you, love you, love you!
Mommy
Sunday, May 24, 2009 11:26 PM, MDT
Hello all,
I'll start with what just happened and work my way backwards with the update...
Tayler, Tristen and I went up to have dinner with Shane tonight at his work and no sooner than we arrive, Tayler threw up and her NG tube because dislodged from her stomach and came out her mouth. Tayler throws up at least a few times a day, but apparently this time it moved everything in the exact wrong way. So there it was, up her nose, down her throat and out her mouth. Not pleasant to say the least, but after the initial shock, Tayler handled it remarkably well. We took Tayler to Swedish ER to have her checked out as we had been instructed to do so should the tube ever come out. They removed the tube by pulling it back out her nose. As soon as it was out Tayler was in a fantastic mood! Swedish did not have the same type of NG tube (it's a special pediatric tube) so they called Children's and together decided that Tayler could go without her tube until we go in on Tuesday for treatment. Tayler is free of her nose tube at the moment and she is loving it! Maybe we can now convince her to eat something :)
Ok, now back to where we left off last week....It has been a good week since we wrote last. Tayler was set to start chemo this past week, but long story short, her blood counts were never high enough so she will start chemo this coming Tuesday. Tayler did have to have a blood transfusion last Monday, but that was her only treatment for the week. She has been able to have a nice long weekend. We haven't even had to bring her in for as much as a check up since last Wednesday.
Tayler has been feeling good and has been in good spirits. She has been able to play, laugh, and relax. Her sweet personality is always shining through :)
The plan is to start chemo back up on Tuesday as Monday is Memorial day. In addition to chemo starting, Tayler will also be starting a new anti nausea medication. The medication is in the trial stage right now and with how sick she has been with chemo we opted to have Tayler participate in the study. The drug has already been approved for adults and has shown effective in kids over 12 years old. The study is just starting for kids under 12 so keep your fingers crossed that it helps her little tummy!!!
One more day of fun at home before the start of a long week of treatment, so I'm going to bed so I can enjoy the day with my wonderful family. I hope you all have a great Memorial day and of course pay tribute to all those who have served and are currently serving in the armed forces.
Love,
Alena
Tayler~ Wow! You are such a brave girl. I know you were scared when the tube came out your mouth, but you handled it so well. I have so much fun being around you and can't wait to play more tomorrow. I love you so much!!!
Love,
Mommy
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