Monday, December 28, 2009
Tuesday, December 15, 2009
We made treats for everyone at the clinic and got to deliver them on Monday. Grant was SO excited! He ran around handing everyone their little bag and even gave out a few hugs (very uncharacteristic for Grant). It was fun to watch him be so happy. When we told them all Merry Christmas b/c we wouldn't be back until after Christmas, they all sadly said 'awww'. It is a little sad and crazy that we won't be back for 2 whole weeks! But, we are so excited to be at this stage of treatment. We are also glad that this break aligned with Christmas. He should feel really great...like himself for all of the celebrating.
God's timing is always perfect and His ways are higher than our ways!
Saturday, December 12, 2009
Tuesday, December 8, 2009
Sunday, December 6, 2009
Wednesday, December 2, 2009
We had a nice, uneventful Thanksgiving....just the way we wanted it. Grant and Daddy left for the hospital about 7:30 and returned home about 11:30. We headed over to my parents' for the rest of the afternoon and a traditional Thanksgiving meal. I actually wanted to blog that day about so many things I am thankful for right now. But, I got too emotional just thinking about it to actually be able to type it out. In short, we know we are blessed!
Grant has gone to the clinic every day this week so far. He goes for his last day of treatment tomorrow. But, depending on his blood counts, may have to go back on Friday for a blood transfusion. His counts have been on the decline and the transfusion is likely.
He had a tough day being accessed on Monday, but he only had to do it once. He just stays accessed all week when we have to go everyday. That night he had a nightmare and was sitting in his bed screaming, "No no, that hurts! Stop!" Heartbreaking!! He also had to get his H1N1 shot today. Not fun! Monday was also interesting b/c Trent went to the doctor and was diagnosed with croup. He has been on a 3 day steriod. Croup is contagious so we are being extra extra careful. I think Grant was a little excited that somebody else was taking medicine.
We are getting so close to maintenance. Grant is taking oral chemo at home. He will go back to the clinic for blood checks for a couple of weeks. Then, when he "makes numbers" again, he will start maintenance.
Grant is very excited about Christmas! We put up our Christmas tree and got the house decorated. He has been playing with his nativity scene endlessly. He puts Mary, Joseph and baby Jesus in the stable and then lines all the other people up to look at Jesus. So perfect. I can't wait to be in that line!
Monday, November 23, 2009
Thursday, November 19, 2009
Monday, November 16, 2009
Tuesday, November 10, 2009
This last one is just a hilarious picture of Trent wearing Rudy's shoes.
Monday, November 9, 2009
Thursday, November 5, 2009
Wednesday, November 4, 2009
Tuesday, November 3, 2009
They took another blood sample early this morning, but it clotted before they tested it. So, they will have to come back to take another sample at 11:30. We've seen a medical student in the practice that is following Grant this morning, but are still waiting to see Dr. Heym. I assume we won't see him until after we have the results of the CBC. Right now, Grant is content to watch tv. (Our tv is really terrible. It doesn't have any green in the picture. He watched Cars last night and Chick Hicks was brown. He doesn't seem to care.) He is still very congested, which the antibiotics are supposed to be helping with. He is on 2 of the strongest, all-encompassing antibiotics. He will not be able to leave the room b/c his numbers are so low. They don't want him exposed to anything. And, apparently, they have to wait 6-10 days for the results of the H1N1 test b/c they send it to the state. I would be shocked if it was positive b/c he doesn't feel that bad. We will keep you posted.
Monday, November 2, 2009
The good news is that his x-ray showed his lungs were clear and he tested negative for the flu. They have been giving him anitbiotics by IV and tylenol for his temperature. His temp broke and he is feeling much better. He is painting a wooden car in his hospital room right now.
We are all very tired and will definitely need to catch up on some sleep tonight. We will be taking things one day at a time, so we have no idea how long we could be here. The oncologist that saw him today, Dr. Eames, said that we could be here a week. The problem will be when they start chemo again, it will continue to knock his numbers down.
We are confined to his room until he has been 24 hours w/o fever. And the entire hospital is in lockdown mode b/c of the flu, so we can not have any visitors. We just covet your prayers and thank the Lord that Grant is in such great care.
Sunday, November 1, 2009
Wednesday, October 28, 2009
Thank you to Pam for putting together this amazing video. We hope it blesses you as much as it has blessed us. And we hope you know how much God loves us!!!
Grant loves his leukemia party movie and sings along with it. We watch it several times a day.
Tuesday, October 27, 2009
Friday, October 23, 2009
Monday, October 19, 2009
Grant had an absolutely GREAT day at the clinic. He had to be accessed to receive 2 chemo drugs through his port. He also had a spinal tap. Through all of this poking and discomfort, all he did was say he didn't like it and fuss a little. It was amazing and wonderful. I know that this was the answer to so many prayers.
But, the treatment today has hit him really hard. By this afternoon, he was feeling pretty terrible. He is very nauseous and is vomiting regularly. He is having trouble keeping anything down. He did finally eat 2 pieces of bread and butter and kept them down this evening. He is still battling a head cold and is very congested, so that is not making things any easier. He also started steroids again today and will be on them for 7 days.
We are very anxious about the next few days. B/c Grant had the chemo by spinal tap today, he will have to take the "rescue" drug to help prevent another TIA. And it is so hard to see him not feeling well and just not himself. For example, Grant just cried inexplicably for about an hour this afternoon. I didn't know what to do b/c he didn't know why he was crying. So, I basically just sat next to him and cried too. :(
Please just know that we appreciate and covet your prayers! Our God is big and He cares about us. Even when things seem out of control and frustrating, He holds us in the palm of His hand.
Sunday, October 18, 2009
Thank you for being the 'many'. We know that God is listening and answering prayers.
Saturday, October 17, 2009
Thursday, October 15, 2009
Tonight we had our class at the hospital and Grant gets so excited to play with friends and pack his lunchable for dinner. But, as I was circling the parking garage, Trent started throwing up. I had taken their temperatures before we headed downtown to make sure they weren't running fever. Trent's was 97.7. I took it after I got parked in the parking garage and it was 99.5. So, I cleaned up that mess, called Rudy, and we all headed home. Grant was so upset that he didn't get to stay and play. But, he was really torn b/c he knew that Trent didn't feel well and that made him sad. So, Rudy and Grant went to a friend's to play. Trent seemed to be feeling better after he took a bath and his temperature went back down. He had some crackers and played a little, but then acted ready for bed. His temperature was back up when he went to bed. Please pray that Trent recovers quickly and that Grant will not be affected.
Wednesday, October 14, 2009
Today, Grant is running a bit of a fever, so we are just keeping an eye on it. He doesn't seem like he feels very good, but we don't need to call the doctor until 101. Please pray that his body can fight and this resolves itself.
Monday, October 12, 2009
Sunday, October 11, 2009
Do not fear...for I am your God. I will strengthen you and help you... Isaiah 41:10
Wednesday, October 7, 2009
Sunday, October 4, 2009
Saturday, October 3, 2009
I was able to talk to Dr. Torres (who happened to be the on-call oncologist that looked at the MRI and discharged us from the ER) a little more about what happened with Grant. It was a lot less stressful and easier to think. The official diagnosis is a TIA (which I can't remember what the letters stand for). The definition is an episode with stroke-like symptoms with no evidence on the imaging that resolved on its own. Dr. Torres told me that both, her stroke team and the group that was doing the study on Grant, are doing more research on his case. She told me that they don't really have a lot of cases to compare it to b/c it's actually more rare than I originally thought. Since he will continue to get chemo by spinal tap, he will have to take a "rescue drug" the day after to try to help prevent this from happening again. But, he will be at risk each time.
Please pray that Grant's numbers will remain high enough to start treatment. And please pray for protection from the flu. We will be pretty isolated from now on.
I have good plans for you, not plans to hurt you.
I will give you hope and a good future.
Then you will call my name.
You will come to me and pray to me, and I will listen to you.
You will search for me. And when you
search for me with all your heart, you will find me!
Wednesday, September 30, 2009
Monday, September 28, 2009
God just continues to bless us over and over and over!!
Saturday, September 26, 2009
Yesterday, we met a new family that moved in across the street. In our short conversation, we discovered that one of their daughters has a rare blood disease. She is being treated by the same doctors at Cook Children's and goes to the Grapevine clinic regularly. It blows my mind every time I think about it. I have to believe that God already knew they were going to move in there when our house was on the market and not selling. I am so thankful that His ways are higher than our ways!
Grant is feeling really good! We had a particularly fun day yesterday b/c Grant kept getting tickled and laughing uncontrollably. It's contagious!
Wednesday, September 23, 2009
Monday, September 21, 2009
Then he saw Dr. Heym who said, "I can't believe how well he is sailing through this!" Wow! God is Good! So...the loopy pill...it makes Grant very silly. We have to wait about an hour after he takes it for it to be the most optimal time to do the procedure. So he is gradually unable to walk straight and really acts drunk. Dr. Heym was sitting next to Grant on the exam table after he had checked him. The entire time Dr. Heym was talking to Rudy and I in the exam room, Grant was nudging him with his elbow and making silly faces. Dr. Heym would stop and tickle him or talk to him, but as soon as he started talking again, Grant started nudging again. :) It's pretty funny to watch him get so silly.
The procedure went pretty well. He did jump and scream right when he got poked, but settled down fairly quickly. Child Life is coming to the Grapevine clinic now and was there today, so we are excited about that. Child Life is the group of people that work at the hospital who are trained to work with and distract the children in these difficult situations. Grant also got two drugs through his port. He doesn't like to be deaccessed either, so he kept telling me we were going to take the noodle home with us today. We didn't. All of his numbers were really good today. We are just trying to avoid sick people, which is getting harder and harder. We have all had our flu shots and will become more isolated as Grant's treatment intensifies in the next few weeks.
My mom has resigned from her position at the pregnancy center so she can help for as long as needed. What a blessing she has been! Thanks mom!
Thank you for all of the continued prayers!
Friday, September 18, 2009
Grant has been struggling a little bit with reacting very angrily to normal situations. We think he is just frustrated with his situation and doesn't know how to express it any other way. He knows that home is a safe place and we will love him no matter what. It's hard to know how to balance the fact that he is sick and in a very difficult situation with the fact that we don't want a monster on our hands when this is all in the past. Please pray for wisdom!
COUNTDOWN TO LIGHT THE NIGHT WALK: 22 DAYS
Make sure you sign up for our team if you are planning to walk to make sure you get a balloon to carry. T-shirt deadline: Sept. 23rd.
Wednesday, September 16, 2009
Monday, September 14, 2009
Friday, September 11, 2009
Grant checked out great with the doctor and all of his numbers are holding steady. He will go back next Wed. for a CBC and then the following Monday for more treatment. Thank you for all of your continued prayers!
Wednesday, September 9, 2009
Tuesday, September 8, 2009
Thursday, September 3, 2009
Monday, August 31, 2009
In other news, we went to church on Sunday and Grant went to big church with Rudy and I. We happened to be observing The Lord's Supper. There were many comical statements made by Grant as we tried to explain what was going on and he tried to figure it out. But the one most telling of his situation was when Rudy picked a juice from the tray and Grant very seriously and almost sadly said, "Is that YOUR medicine?"
Trent has been ok'd to attend MDO occasionally through this phase of treatment. We are going to try to take him a few times in September. He is very social and needs to be around some other kids his age.
Also, I am driving a new (to me) car. We were driving to my parents' on Saturday and my check engine light started going crazy. The engine began misfiring and we knew we had trouble. We dropped the boys off and went to the car dealership. We left with a 2004 Explorer. There's always something going on.......
Saturday, August 29, 2009
I also wanted to point out the port on the right side of his chest. I know this is kind of hard to imagine when you are just hearing about it. But, it is completely under his skin. Before he lost so much weight, you couldn't really see it, but now it is just a little lump on his chest. He's happy to show it!
Wednesday, August 26, 2009
Hope you are all ordering your t-shirts! And don't forget to sign up for the walk....
LIGHT THE NIGHT WALK COUNTDOWN: 46 DAYS
Tuesday, August 25, 2009
Sunday, August 23, 2009
Saturday, August 22, 2009
Friday, August 21, 2009
LIGHT THE NIGHT WALK COUNTDOWN: 51 DAYS
Thursday, August 20, 2009
The entire clinic celebrated with us that Grant reached the necessary numbers. Even a family we met today saw us again in the playroom and were so excited to see that Grant was getting his chemo. We just so appreciate everyone that is in this fight with us.
We also celebrated with lunch at Sam's, of course. It was very interesting b/c we met another family who has a little girl that just finished all of her treatment. She is completely finished and offered much hope to me in such an innocent way. She told me she used to have leukemia and that she used to be bald like Grant. She had beautiful, long, brown hair! They were such an encouragment. We also saw another family that we see at the clinic. It was the place to go for cancer patients today!
Grant will go back to the clinic next week just to check numbers and make sure he doesn't need any transfusions. He will not get any more chemo until the following Monday.
Monday, August 17, 2009
Sunday, August 16, 2009
Saturday, August 15, 2009
Thursday, August 13, 2009
Monday, August 10, 2009
Grant is actually feeling really well. He does not have a bunch of drugs in his system. The only medication he is taking right now is an antibiotic to help prevent pneumonia. He is eating much better, which showed on the scales today. This is the first time his weight has increased since he has been off the steroids. He is still having a little trouble sleeping through the night and he is awake at the crack of dawn. But, he doesn't seem to be tired. And so we wait again......
Tuesday, August 4, 2009
Monday, August 3, 2009
Grant did not have a very good day at the clinic today. He was very anxious about everything and would not even let Dr. Heym examine him. He even prayed tonight, "Help me to get rid of this leukemia and don't go to the clinic."
On a lighter note, he is learning to work his situation. He told me this weekend that he could not pick up his toys in the backyard b/c he has leukemia. He can't do a lot of things, but that is not one of them. ;)
Wednesday, July 29, 2009
Tuesday, July 28, 2009
He is having a few side effects from the most recent drug he is getting. It causes him to have pain in his legs, which also keeps him from sleeping well some nights. I think it also causes him to have a bad taste in his mouth, so this makes finding something he will eat even more difficult.