November is known for Thanksgiving, when most show their gratitude and address their many blessings. Since we found out that Lizzy would need a Bone Marrow Transplant I have been counting my blessings more often. Dailey , I see my children reach leap and bounds, some never thought possible. But I always knew they were capable of great, mountaous things. I didn’t name this Little Kids, Big Dreams for no reason.
Where to start?? Well Lizzy was released from the hospital on July 23rd! It was a glorious day, even though Lizzy could have cared less. She is extremely depressed, but do you blame her? She just spent 2 months being poked and prodded around the clock. A life time for a 2 year old. Literally, they draw labs at 4am, which means no sleep for anyone! So, we have been out for a week but some days it still feels like we are in.
Lizzy has clinic appointments on Monday, Wednesday, and Friday. Which sound like it should be a quick process but takes most of the day. On Wednesdays, Lizzy has IVIG in Day Hospital. Now, we have found out Mason's blood levels are dropping drastically. He also will be receiving IVIG weekly. Luckily, we can schedule them on the same day. Or so we thought. You would think that siblings both getting the same infusion, could be done in the same room at the same time. WRONG! This apparently is a no-no! So the whole family was in Day Hospital at the same time, different rooms of course! When dad goes back to work in a week, they will do the infusions back to back in the same room. Ugh, I am exhausted just talking about it! Please, every Hump Day say a little prayer for this momma to keep her sanity!
People continue to ask how I am doing. My response is always- it could be worse. Because it can, I would rather fight everyday for my children's lives than to just sit back and watch them waste away. Yes, I will give up everything. Most days, I don't put on make up or do my hair. That used to be my life, but now I am luck to brush my teeth! But, I would not change it for the world. I am thankful to have my family all together (for a few more days anyway). Every night we all sit at the table for dinner(usually provided by Shellie and friends) and smile and laugh and Lizzy has a melt down about being away from the TV! The kid is addicted! Seriously, I want everyone to step back and appreciate the small things in life. Count your blessings. IT COULD ALWAYS BE WORSE!
Mason sends hugs and kisses!
Lizzy sends grunts and shoves, one day she will be happy again!
More good news to report, but a little bad news sprinkled in, as always. Lizzy is doing great. Her counts are continuing to go up and since her initial engraftment test came back 100%, her second and third engraftment test have also come back 100%. Meaning her donor cells have taken over and been doing so for a couple weeks now. Lets just hope all engraftment test come back as well as these first three. All her blood counts are either in the normal range or close.
A four person golf scramble is scheduled for August 5th, 2011 at The Oaks Golf Course. There are two times to participate with tee times at 8am & 3pm. The cost is $60 per person for 18 holes of golf. The cart is included, drinks purchased separately.
Prizes for:
Closest to the pin
Longest Drive
Longest Putt
Betting Hole
Also:
50/50 drawing $1/ea. or 6/$5.
Mulligans 3/$5
Sponsorships available for $100 (banner supplied if needed)
All procedes to benefit the Elizabeth Clemence Medical Fund.
Lizzy is doing amazingly! She had a feeding tube put in to help give her meds, since she does horribly with oral meds, and there are a lot now. Plus, she isn't quite eating enough for a days worth of nourishment. This is good news though. We were told by her doctors early that she could not be released until all of the iv hookups are being administered orally or without need of. Now, she is doing so well that she is "unhooked" for most of the every day and we are just waiting for her to get over a virus that she had before transplant that we expected to return after her bmt. It isn't one of the bad viruses that she had and is doing extremely well so far with it. We want her over the virus before we get discharged for the sake of her brother, Mason. He may have the same disorder that Lizzy has, so we are being very cautious with him, as we have learned from what Lizzy has gone through in her life.
Lizzy continues to battle and recover. Since the last update, she has gotten through a rough point in the recovery process, engrafting. During this time, she had a fever for a couple of days, which is normal when engrafting is happening. She also had a couple of bad nights, when she was uncomfortable due to pain. There was a test sent off to check her engrafting results and it came back 100% donor cells. This is great news! A major hurdle to jump, but she did it. Now we hope all engrafting tests come back with such great results, as they send this test multiple times to make sure her new cells are reproducing properly.
Where to start? Her cells arrived early, which was a good start. The cells were hooked up to I.V. and distributed in about an hour and a half. It was a very emotional experience. I played "our song" for the occasion. A song that we played on our very first car ride home, from the NICU at St. John's, Tom Petty and the Heartbreakers, "The Waiting." It's sort of an anthem, symbolizing how the journey is long, but the waiting is the hardest part. We waited to take her home after birth, we waited for a long time to find a diagnosis for her, and waited to finally get to transplant. Now the cells are in and all there is left to do is wait and let Lizzy's body take control.
CHEMO IS DONE!! She finished with Methalan on Monday, this is the big gun chemo(the one they were worried about her reaction) Lizzy is still doing fantastic! They tried to take her off her scheduled Zofran and that did not fly. She threw up 3 times this morning, resulting in her NG tube coming out. So Dr. Bleesing decided to keep in out and start her on TPN lipids, which is basically nutrition through her central line. She still has all her hair, which kinda makes me sad. She has so many cute hats and headbands to wear. There is still time for her to loose it. So all her medicine will be done IV, hopefully! She does not like anything in her mouth these days! Mouth care is a nightmare! Except her beloved pacifier, which we call her courage. She still has no mouth sores, luckily. We know they are still to come, it will not be a good day when she wont be able to take her paci!
We are on Day 3 of Fluedarabine and Lizzy is doing great! We have 2 more days of this chemo and then a rest day then a big time chemo to finish knocking down all her cells. But Lizzy is fantastic, still playing like crazy! She has a big girl bed now, it has a tent like thing over it so she can't climb out when left alone. But we love that we can lay with her now, it makes bed time much easier. But she like when the bed is sitting up because she can climb to the top and slide down. One advantage of being tiny! Not much else to report, she still has all her hair! But when it is gone, we have a couple of guys who are shaving their head with her!
Not much to report! Lizzy is doing great! She just plays all day but gets tired easily and does not want to go to sleep! She did get to go on a walk in the hall yesterday! She was thrilled, she actually ran! It was a funny picture of mom chasing her with her IV poll. Also, she had on her tutu and made everyone's day! So many people stopped to talk to her but she just kept going! She will get to take a walk later, as long as there are not too many people in the hall! Fluedarabine starts Wednesday, then things will start moving very quickly! We are so ready, this is what we have been preparing for. It doesn't seem real some days! But then she barfs and it is back to reality! Keep up the prayers! Miss and love you all!