Well, here we are, at the end of a protocol. Today we celebrated Jack's last chemo treatment. We had a great time. We brought a cake especially chosen by Jack, nurse Sara brought ice cream, one mom brought party favors and the party was complete. Jack chose a white chocolate rasberry cake from the bakery (what great taste) and everyone enjoyed it.
When we first arrive at chemo, nurse Sara accesses his port and draws his blood, then we wait for the results to return on his ANC to make sure he is healthy enough to receive chemo. Today his counts were low, 870 ANC. Nurse Sara said, well, no chemo today, and handed me the paper and I looked at it not believing that of all days, with a cake and ice cream and a party just waiting to take place, it would not be the last day after all. I suggested she call Dr. Bowman and check with him and see if that number could be flexible, or if he felt like it was stuck in stone. All the other kids can get chemo with their counts as low as 500, only Jack has to have over 1000. With Jack's chemo being overseen by one hospital but orders written at Dallas Children's I believe they might just have different protocol. So after talking it over with Dr. Bowman, nurse Sara said we would be finish up chemo today after all.
Jack will be in a mask for the next week or so, and we will keep him home from large gatherings, to keep him as safe as possible. Celebrate with us...we are done with this protocol.
The other end of the spectrum....A new family came to chemo today. They have a 4 month old son, Collin, who just had a tumor removed from his kidney a couple of weeks ago at Cook's. The doctors are hopeful and believe that they got all the tumor, but are doing chemo to make sure any rogue tumor cells are killed off. This poor mama and her husband with their baby walked into craziness today with the party and all. After they were introduced to everyone they found their seats and waited for their sons 2nd treatment to be given. The first was given at Cook's last week, so this was their first time at Dr. Hirsch's office. As I looked over at the mom, she was looking around the room at all 7 kids hooked up to chemo while they were playing and smiling and her eyes were filled with tears. She was overwhelmed by what she was seeing, and I am sure by the last couple of weeks. One day you take your baby to the doctor for their 4 month check up, the next day you are in a big hospital and your baby is being wheeled into surgery, and you have entered a community that you never knew existed.
I looked into her eyes and said, this is all pretty new to you isn't it? And she just started crying. I talked with her about how afraid I was in the beginning, and how I felt, then I shared all the blessings of friends, and how God can bring good from anything, and I started crying too. I am so going to miss these people. She was crying because she was entering and I was crying because we were leaving.
In Luke 19:39, " Some of the Pharisees in the crowd said to Jesus, "Teacher, rebuke your disciples! I tell you, he (Jesus) replied, "if they keep quiet, the stones will cry out."
I will cry out what the people were saying.....Blessed is the King who comes in the name of the Lord! Peace in Heaven and glory in the highest!
I want to cry out to the world, if you only knew how broken my heart was, how I was afraid and angry, how someone who lived in the pit of sin for so many years can have a cup that runs over with joy, the desire to abide in God's Word, tears that are counted by God, an assurance of life in heaven....you can have this....God is waiting to bless you....lift your eyes and behold the King of Glory, your Creator, the Lover of your soul, give Him your heart and you will never be sorry.
I praise you Lord, for turning our mourning into dancing, for the filling of your Spirit to live beyond ourselves, and in You.
In two weeks we go to Dallas and Jack will have his MRI and we will discover what is happening in his head. Will he need a different chemo? Will the tumor be gone? We are in a place where we just wait now and see. I am not crying out to the Lord in praise because our treatments are done, but because of his faithfulness in every moment of every day of our journey of chemo, and each day before and after. He absolutely thrills me. Glory.
June 30, 2006
June 28, 2006
I thought I would update you on the stray cat situation. Yesterday morning the Animal Pick Up man called and said he would be by with the trap. He arrived a couple of minutes later. He was just about to tell me how to use the trap, and I said, I can't believe that the cat is not here on my doorstep, he said, that is how it seems to work. Right then the cat walks out from under our car and sits right next to the man, he said is this the cat? Yes, it is! He picked up the poor thing and took it to the van, came back and got the cage and that was the end of that. I did not hear my dog bark once yesterday after Mr./Mrs. Cat was rescued/captured.
Jack has therapy today and tomorrow, tomorrow he will pick up his new braces for his feet. He was measured about 2 weeks ago and they are ready for us to go and pick up. The chemo has made his muscles in his feet drop, so his flat feet turned inverted almost and he will wear these braces until all that gets better. I am sure we will start out for an hour a day and build up to whatever the maximum is, I assume all day wearing. I am glad that it is summertime so when school arrives he will have gotten use to wearing them.
He is very excited for his feet braces, he was able to pick out the colors of the velcro and decorative ribbon, which he chose flames, so he will be zooming by in his new braces with the hot colors he chose. His physical therapist said that she has never seen a child more open to do what he needs to do with a smile on his face. I love Jack.
June 26, 2006
Monday afternoon. The kids and I went to see Toy Story 2 at the Paramount Theatre this morning. They are having on occassional Monday's a kids movie that they are opening up to some of the day cares and girls and boys clubs. It is open to the public also $2 for adults and $1 for kids, wow. We had a great time and sat at the very top of the theatre, it is very, very high up and even a bit dizzying to me, but it was fun for the kids to have to look down to see the movie. I love the Paramount.
We have a cat dilemma. There has been a stray cat hanging out in front of our house for more than a month. This cat is most persistant and will not go away. It has taken up residence on or about our front porch for no apparent reason except that it drives our dog CRAZY!! There are definate health concerns for this cat as it has several spots of open wounds on its body, which at first made me feel some sympathy for this cat, unfortunately my sympathy has given way to my last nerve being barked away.
I called the Animal Pick Up people and they are going to bring a cage to trap the cat in, I would imagine that it might not be necessary as when they walk up to my house to knock on the door, they will have to step over the fur ball to get to it. I hope that they are able to bring the cat to full health and find it a good home, just nowhere near us and our barking dog.
We had a great time with Rob's dad and are looking forward to his sister and her husband and children being in town in just a couple of days. Summertime is so fun.
Jack has his last chemo in this protocal in just 4 more days. We are revving up for a fun party. Talk again soon.
June 22, 2006
Jack and Sophie wore their new t-shirts from Universal Studios last night to church. Rob bought them as a surprise, good job dad.
The week is almost over. During the summertime it seems that our days pass so quickly. Jack had chemo yesterday and his counts were 1110 ANC, they are a bit low but still over that crucial 1000 mark, so we are good.
Rob's dad is driving into town today and will spend some time with us in Abilene. We always have a great time during his visits.
We haven't had too much time to spend at the pool this week, bummer. Next week we should be there more, we all miss the pool.
Last night we let the kids stay up late and watch that new tv show on the best variety act, the people were buzzed off, or allowed to come back to the show for another try. I guess the acrobatic part inspired Jack, who was trying to do summersalts and hand stands, all the while trying to hold up Derek's shorts that he was wearing as jammies with his chin. He was so funny to watch.
Next Friday is Jack's last treatment on this chemo program. We will bring a cake and Nurse Sara is going to make homemade ice cream. One of the rituals done at the chemo center adult or child, is when you finish your last treatment the nurses ring a bell and bust confetti on your head, I am sure Jack will think that is totally cool.
June 20, 2006
Hi. It is Tuesday afternoon and the kids are playing at their friends house. I am still getting caught up on all the household stuff and have decided it will take me atleast another week for my body to recover from the marathon of theme parks. The kids have all wished that we could return to the Give Kids the World Village. I am looking forward to making a memory book of pictures and details so we can look back on it and remember just how much cool stuff we did.
I have some very exciting news about Jack's chemo treatments. I think the schedule I had was for the experimental program which we did not participate in, and that schedule was several weeks longer than the protocol that Jack is on. So low and behold, we have 2 more treatments to go on this chemo regimen. Tomorrow morning (Wednesday), and then next week we have chemo on Friday, and that will be our last on this type of medicine. I can't even believe that. We will have 2 weeks to wait after the treatment is over before we head to Dallas for his MRI on July 11, and then find out the results on July 12th.
This is very weird, but I am excited that this is almost over, and at the same time I feel like I am on the verge of tears, for many reasons I guess, we will miss seeing our new friends we have made at chemo, the nurses and patients. I will miss that special time with Jack, just hanging out and being with him, and then physically I know that this is the end of these particular medicines for Jack, what lies ahead is up in the air. It is in the times of uncertainty it seems that my faith is tested and through the Holy Spirit continues to abide in the word of the Lord.
I will post after chemo tomorrow.
June 17, 2006
Jack's chemo went well yesterday. His counts were strong 1790 ANC. We have been crazy busy with family in town. Fun. Here are some pics of the trip. Most are self explanitory, there are several from the Give Kids The World Village, the one with our whole family is right in front of our Villa where we lived while in the Village. I hope you enjoy seeing them.
June 16, 2006
Back in Abilene. We arrived at 9pm last night. The splendor and magic was hard to say good bye too. When I get a bit of time I will be sure and download some pictures from the trip, but life is starting back with a roar, Jack has chemo this morning at 8:30. We are so grateful for our time away, the experience of living every moment to the fullest. I must have thanked God many times over this last week.
I am just as grateful for the daily life we live. Isn't it great to get away and see some place new, watch the joy on the faces of your children (and husband), and then be excited to get back to where you really live. We are blessed.
As we were flying home I started to think of how our lives have changed since Jack's diagnosis. And the first and only thoughts were of the goodness of this journey. We know who our friends are, we know how much our Christian brothers and sisters love us, we have been blessed by the new friends we have met at the hospitals and clinics. I never would have chosen or even dreamed of the path we are on, but God can bring good out of everything, his scripture says it, and I believe it.
June 13, 2006
Good evening. It is about 9:30pm, we returned from a day at Universal Studios and dinner out, we made it back just in time for ice cream before they closed up.
We had a very special day today. The rain didn't slow us down too much today, although it seemed to travel sideways with serious winds behind it, so we were a bit more drenched, but still had a great time.
One extra-special happening today went like this....First of all the character sitings have not been high on the kids list, except for the princesses with Sophie. It has been fun to see them and get pictures but the kids weren't crazy about standing in line for anyone. So this morning as we arrived Scooby Doo (you might already know that Jack is Scooby's #1 Fan) and Shaggy were finishing up standing in a meet and greet line, and being mightily whisked away to go into hiding so they might fill up on Scooby Snacks before the next time.
Several hours later Elaine, Jack, Sophie and I were walking through the park and saw Scooby and Shaggy. This was the only time we were all set on standing in line for a picture. We started to get into line and then just as quick as earlier, their autograph and picture time had expired and they were again being whisked away. I walked over to the park worker and asked when their next meet and greet would be, and she took one look at Jack in his Make A Wish shirt in his wheelchair and said, "Wait right here!" out of breath she makes her way back to us about 5 minutes later, and calls us over to a secluded garden area just around the corner, and Scooby and Shaggy were waiting for us. As quick as he could, Jack jumped out of the wheelchair and ran over to Scooby and gave him a huge hug. We got some pictures and Jack was sure to tell them that he was a great fan. All the while Elaine and I are trying to take pictures with tears streaming down our faces, and I think I was even on the verge of a full blubber, but I pulled it together and took some very cute pics. They were so glad to meet Jack and Sophie.
Off to the beach tomorrow then we decided to stay the rest of the day on the property as there are many activities that we haven't been able to find the time to fit in yet, fishing...putt putt...and I am sure Derek will enjoy a couple more bowls of ice cream.
June 12, 2006
Hi, we are having so much fun. We spent the day at the Magic Kingdom today in the rain, and it was our best day yet. Only wimps stay home in the rain in Florida. We donned our rain pancho's and headed out. The day was full of magical rides, and alot of craziness. During the evening Sophie and I went to one of the hotels to dine with the Princess Cinderella. She was able to meet Cinderella, 2 of the mice, and last but not least Prince Charming, who charmed Sophie. I think she blushed when she was having her picture taken with him. During the dinner Sophie asked me, if I had expected the dinner to be like this.... and I said, that I didn't know what to expect, but the food was better than expected. I asked her the same question, and she said, that she thought we were going to be able to play games, not just eat...and I said that I didn't think there were going to be any games, and her response was, "Not Even The Limbo?" That statement says it all, there has been nothing but fun and games going on for us, and she wasn't sure what to do with herself with just waiting for Cinderella to make her way to our table. This morning at Give Kids The World, Belle, Mickey, Minnie, Goofy and Max (Goofy's son) came to visit. So it has been a great day.
Tomorrow we are off to Universal Orlando and Wednesday we are going to the beach and possibly the Kennedy Space Center, then we will see you all soon.
Happily Ever After......
June 10, 2006
Fun, Fun, Fun,....
We have almost completed our first full day in Orlando. We went to MGM Disney today and had a blast. Jack's favorite ride was Star Tours, Sophie's was the Great Disney Ride and Derek...one of the many huge roller coasters he rode today. Although Derek did say he would not want to do the Tower of Terror again, his stomach almost came out of his nose. Nobody got sick on any of the rides and a good time was had. We have experience 90% humidity on a 90 something degree day, and it is very sticky. The best part of the day was the Star Wars Parade through MGM this morning, with all the characters and several of the real people involved in the making of the movies.
When we first walked in to MGM on all the roofs the Storm Troopers were guarding from the roof with their weapons. Dreamy.
The place we are staying is called Give Kids the World. It is amazing. It seems weird to leave such an awesome place each morning, as there is enough to do during the day on property. The Ice Cream Parlor opens for breakfast at 7:30 am and there is putt putt, arcades, carousels, movie theatre, 2 swimming pools, trolley rides, train rides, and tomorrow night the Mayor, who is a big 6 foot bunny will stop by our villa where we "live" and tuck the kids into their beds. Mayor Clayton is celebrating his 20th Birthday with a big bash in about 5 minutes, so I will keep it short.
We are having a great time, and the kids are in heaven. Thanks for your prayers, everyone feels great.
June 08, 2006
Thursday Afternoon. We arrived home from chemo a couple of hours ago, Jack's counts are good at 1600 ANC. Now that it is summertime, all the brothers and sisters are at chemo also. It was very loud and busy in the office today. It was a good day. We will have chemo on Friday of next week.
My Nana came home from the hospital today. She was very glad to be in her own bed again. She has had a long 2 weeks at the hospital. My siblings will be in and out for the next couple of weeks to visit with her and my grandfather.
We continue to get ready for our trip to Disney World, and so I am going to make this short. Keep us in your prayers for wellness and safety. I came down with a stomach bug 2 nights ago, and so far it doesn't look like anyone else is catching it. Thank you Lord. This morning when I saw Jack after he woke up, his first words were, "are you feeling better today?" and I said, yes, all better, and he said "woohoo, we're goin' to disneyworld!!!!!" Arms a' flailin and and a huge smile on his face. Thank you for your continued prayers on Jack's and our families behalf.
We will give Mickey a big hug for you.
June 06, 2006
Tuesday Afternoon. I have more things to do than I can count, but blogging seems to be the choice of the moment. Jack is doing well, he has had his 2 week break off of chemo, he starts back Thursday. He is gaining a nice tan from the swimming pool, and enjoying the summer.
We are having a busy week. On my last entry I noted that my Nana is in the hospital, and she continues to be there. She is determined that she is going home soon, not sure when she will be going home, but I am glad that she is getting tended to so well. Her insistance of not having her blood pressure checked more than once a day lasted just mere hours, as she passed out that night because her blood pressure was so low. But the door still stays open to her room, and the sign remains on the door, to NOT close door.
We are getting ready for the Make A Wish Trip to Disney World. The kids are so excited, Jack's first words every morning are a countdown to how many days we have left before we leave. We received the package in the mail yesterday with all the information and stuff we will need for the trip, that was totally fun to look through.
Derek is in football camp this week at ACU. He is loving every sweaty minute of it. I am trying to get information on signing him up for the peewee league in Abilene and have found out it is not information that comes easily. If anyone has any sign up dates for their boys in Abilene, feel free to leave it as a comment, or call me....I am not sure why this is so hard.
I am looking forward to a special pedicure this week. I enjoy semi-regularly getting my toenails done. I have a cantankerous toe nail that has had some issues and the doctor told me that the next ingrown nail I got would mean that horrible laser surgery down the side of the nail (very painful) to cut out the side parts forever. He suggested trying pedicures and see if that would help. Well that was all I needed for my first pedicure in several years, maybe 10yrs. It has been a successful treatment and I have very cute toenails as a side benefit. Well all that said, I found a wonderful nail tech in town that was referred to me by one of my friends that could actually paint Mickey Mouse on my big toes for our trip. I took her a picture of Mickey and she said she would work on it all month, and I go in the night before our trip to get a Disney Pedicure. How fun is that!!!!!
So we are having a busy, busy, week but the anticipation is thrilling. We are like that commercial on tv with the little boys that couldn't go to sleep the night before they went to Disney. I will post on Thursday after chemo.
June 02, 2006
Friday morning. Jack had his blood draw yesterday and his counts were good. 2240 ANC, next week he will be back on the chemo. He is starting his 9th round, and he has 10 rounds total to complete. I might have posted something different earlier, I was confused with something the nurse told me, but having looked at the calendar and dates, I see he has 2 more rounds to go. I am easily confused, which is why I live by my calendar and palm pilot. My husband bought me a palm pilot for Christmas last year and I can honestly say it is the best gift ever. I have every dr.'s appt., therapy appt., dr.'s phone number and address, insurance people, family, and friends contact info...and alot more all in one place. I would not consider myself a tech fanatic, but this piece of tech is awesome.
Jack had a fun day at chemo. A couple of the mom's made homeade mexican food for Austin's birthday bash, so we had chicken flauta's, and taco's with homeade salsa for lunch. It was way yummy. Austin received everything Spidey, as he loves the webbed superhero. Happy 5th Birthday Austin.
After the blood draw, we headed up to the 6th floor of the hospital to visit my nana. She might come home today, we will see. She said she is feeling much better. The echo on her heart showed the docs that her heart is strong. She is so funny. She has decided on this hospital stay to a new level, that she is still in charge of everything around her. She does not like the blood pressure cuff, and says it hurts much too much to have her blood pressure taken every 3 hours, she learned she can refuse it all but once a day, so she sent the nurse's aide straight back to the station to let everyone know that she is NOT going to allow her blood pressure to be taken more than once a day, ofcourse she says it with a southern smile on her face. She also does not want her door closed, as it makes her feel claustriphobic, so she had the nurse adjust a sign that was made to say, Keep Door Closed, to say Keep Door Open. She takes care of business. One thing I love about living in the south is the ability to say something that is kind of in your face, but with a sweet smile and a southern drawl and have it sound like you are actually helping someone out.
I celebrated a friend's birthday last night with a bunch of my girlfriends. We ate Chocolate Mound's Cake from McKay's Bakery and homemade Lime Ice Cream, then watched the best movie ever made....Steel Magnolia's. Never mind that myself and several of the other gals can quote the movie word for word, we enjoyed every southern sentence. I am sitting here thinking about which line from the movie I should quote, but can't decide they are all so funny, I love the south, and I watch this movie and can remember those words being said in real life, and the mannerisms of those crazy women, it is very true to southern living. Now ofcourse Texas is not considered Deep South, two of my friends, one from Louisiana - Sarah, and one from Alabama - Denise, would agree to the previous statement, but for those of us who were born in Texas - Texas is home. You know the old saying, "I wasn't born in Texas but I got here as quick as I could." I was born in Texas and lived just a few short years here before we moved out of state, I moved back when I was in my early 20's and felt like I was home again. What is it about Texas that makes me feel that way?, the friendly people, ofcourse my family plays a big part in that....anyway there is my rant on Texas. The only thing that can "drive" me crazy about Texas, is that when you are trying to drive out of Texas, depending on where we are headed, it can take more than a day just to get across that state line.
I hope everyone has a great weekend.