progress-report

May 7 2012

Mon, 07 May 2012 17:02:23 +0100

David here. We received great news today when Dr. Dreyer called to tell me that Grant's PCR test (the most sensitive of the 3 bone marrow tests they run) was completely negative. In the past, the results have been "very low level detected, below level of quantification." The doctors told us that those results were "practically the same" as completely negative. Nevertheless, it feels great to get the completely negative result. Grant will continue on Gleevec (2.5 pills per day) for at least 3 more months when we'll do the bone marrow testing again. Grant is feeling good and continuing to improve in his mobility. The PT he did with Meredith and Danielle at TCH, and the PT he's done with his new therapist, Coach Craig in Kingwood, is really paying off.

On a very sad note, our family had a horribly difficult weekend. On Friday Aidan McSpadden, one of Grant's best buddies from the TCH Cancer Center, passed away. Aidan had a very high risk form of this cruel disease. He fought it with unbelievable courage. Grant and Aidan spent a lot of time together on the 9th floor at TCH. Aidan's smile and bright eyes would light up the entire 9th floor as he received his chemotherapy and waited for weeks and months for his blood counts to rebound. Aidan's parents, Jared and Kelli, and his little brother Jax have been on our minds constantly since we received the news. They have endured so much more in the last 2 years than any family should have to in a lifetime. Please pray for the McSpadden family. And you can go to angelsforaidan.com to read about this wonderful family.

David

February 1 2012

Wed, 01 Feb 2012 23:55:25 +0100

We received the rest of the test results and they were all good! Now, we wait 3 months for the next bone marrow tests.

Please continue to pray for him.

January 31 2012

Tue, 31 Jan 2012 11:54:57 +0100

David here. Grant had his bone marrow aspiration and spinal tap yesterday. As usual, he handled it like a big boy. Not one tear(the same can't be said for mommy and daddy). Dr. Dreyer called last night to tell us that Grant's MRD was 0 which was great news. That means no leukemia cells detected by that test. This is the first of 3 bone marrow tests they run. We should get the other results later in the week. They also tested his spinal fluid for signs of leukemia and those results should be back in a few days.

The official plan now is to continue Gleevec(2 pills every morning) for 6 months; to check his blood every 2 weeks and to check his bone marrow every 3 months. No more steroids, methotrexate, vincristine or 6MP on the plan.

While Grant is continuing on with one medication, yesterday was still a very important milestone for us. It was the last day of his 32 month treatment regimen. We thanked Dr.Dreyer for being Grant's doctor and we told her that we would not have wanted any other doctor treating Grant. Melanie and I are "hands on" parents, meaning we ask a lot of questions. I even regularly emailed Dr. Dreyer medical articles I found. Some doctors probably wouldn't have liked that. Dr. Dreyer never once acted annoyed or put out by our calls, emails or texts. Pediatricians,especially pediatric oncologists, really have 3 patients in every family--the child and the parents. We are so happy that Dr. Dreyer is our doctor.

Please continue to pray for Grant and for all kids with cancer.

January 5 2012

Thu, 05 Jan 2012 15:55:01 +0100

David here.    Grant completed his last scheduled in-clinic chemotherapy treatment on Tuesday. He will continue to take oral chemo for about 4 more weeks.   He will undergo a diagnostic spinal tap and bone marrow biopsy at that point. After that, he will get his blood checked every 4 weeks(unless we want it done more frequently) and have his bone marrow and spinal fluid checked about every 3 months.   The doctors don't really use the term "cured," but they say that if he reaches the 5 year from diagnosis milestone and is still in remission, then it would be very surprising if he relapsed. That means we have at least 28 months(June 1 2014) before we can really start to feel comfortable about his long term condition. But this is still a milestone for us.

Melanie and I have such mixed emotions at this stage. On the one hand we feel like celebrating; on the other hand we are scared to death about the next 28 months of praying and hoping that he does not relapse.   Grant's little body has been put through so much and we could not be prouder of the way he has handled it.   He is a tough little guy and has endured so much more than any child should should ever have to endure. And he has done it, for the most part, with a smile on his face.   Melanie and I are reminded sometimes when we talk to the older kids at TCH about how bad the chemo can make them feel. They talk about the fatigue, muscle aches and nausea they feel after a treatment. Grant was diagnosed at age 2 1/2 so he doesn't even remember not having leukemia or what it's like to feel "normal." He never talks about how the chemo makes him feel, but it must make him feel, at times, exhausted and achy.

In addition to being poked and prodded, stuck with needles and filled full of poison for 2 1/2 years, he has battled so many serious side effects of treatment.   He had kidney problems, methotrexate toxicity, severe sores on his mouth and esophagus preventing him from eating, intestinal complications, multiple C Diff infections, liver toxicity, an unknown skin reaction to chemo, fevers, over 200 nights as an in-patient and multiple stays in the ICU. Most significantly he had a severe neuro-muscular reaction in August of 2009 from which he is still recovering.   One day, as a 3 year old, he was playing baseball and soccer like he was 5. The next day he couldn't talk or walk.   He underwent occupational and physical therapy for 2 years and has made a huge recovery.   His talking and cognitive abilities seem to have completely recovered. He has made enormous strides in his walking/running but he is not "normal" yet.   He still has balance issues and he can't run as well as you'd expect a 5 year old to be able to do.

Grant missed the entire school year of 2009-2010 and about half of 2010-2011. He started the 2010 school year on a walker and unable to play on the playground with his buddies. He finished the year walking without any assistance(sometimes) and playing on the playground on a limited basis. He is now walking completely independently and playing every day on the playground. He is able to play baseball again and is starting to really like playing tackle football with Daddy. Soccer is still very difficult for him because his feet still move a little sluggishly.   We are hopeful that as we resume PT in about a month he will continue to make improvements.

Melanie and I are just as proud of Claire for how she has handled this ordeal. She was only 4 when Grant was diagnosed. In a lot of ways she had to grow up fast. It had to have been so frightening for her to find out that her little brother was sick and needed to be in the hospital for so long. She must have been able to sense the anxiety and fear in Melanie and me, no matter how hard we tried to hide it from her. She has had to deal with the many days and nights of Mommy and/or Daddy not being at home with her. She spent many long days at the clinic or hospital, watching Grant receive treatment.   Grant received so much attention from us and others, which you would think would make her sad or angry. Grant also got so many "perks" such as hanging out with Craig Biggio and being on the TV news. Again, you would think that would make a little girl jealous or sad. Claire has shown almost no resentment or anger towards Grant during this entire 2 1/2 years. She seems to have a maturity beyond her years and is able to understand that Grant needs the special attention and it doesn't mean that Mommy and Daddy don't love her just as much as ever.   A lot of credit for this must go to my mom. Mom took care of Claire, in Waco and in Kingwood, on many occasions during Grant's treatment. Largely because of that, Claire was still able to participate in her ballet and gymnastics activities and make every birthday party she was invited to. I don't know what we'd have done without my mom. She took care of Claire like she was her own daughter and she helped us retain as much normalcy as possible in our home.

Melanie and I cant even begin to thank the many people who have helped us in so many different ways. Our family has come through for us in ways we couldn't have imagined. Our friends have also been there to support us, through prayers, fundraisers, dinners, babysitting, donating blood, and visiting us at the hospital. We've also been touched by the many acts of kindness from strangers. For example, Grant and Claire receive cards and letters all the time, from people all over the world, offering words of support and encouragement.

Please continue to pray for Grant and our family.   And if you haven't done so already, please register with the Bone Marrow registry. Is is so easy to do and there are so many people in desperate need of bone marrow transplants.

Thursday, Dec. 8, 2011

Fri, 09 Dec 2011 04:46:03 +0100

Tonight I asked Grant what he remembered about being in the hospital, and his response kind of surprised me. I have not written before about his room, or his feelings of being in the hospital, so I wanted to record it before I too, hopefully forever, forget. (Hopefully forever, because I hope he never has to be inside the walls of the hospital as a patient again.)

Before I tell you what Grant said about being in the hospital, let me describe the 9th floor and his rooms.

When you enter the 9th floor, you walk up to a desk and check-in. To the left is the door that gives you access to the rooms. Before you can go through that door, you have to clean your hands with the sanitizer that is in a container on the wall on the right hand side of the door. On the check-in desk, there is a sign that describes the symptoms of the flu. If you have any of those, you are not allowed on the floor.

After you clean your hands, and enter through the door, if you look to the right, there is the check-in desk, the door that leads to the room where the doctors gather, and a small wall that has a chart of all the rooms on the floor listed by room number. Next to each room number are these small colored dots. If you spend any amount of time on the 9th floor, you learn what those colored dots mean. Green means that patient is doing well. Yellow, not so good. And red - really bad. You learn that the patient in the "red" room may not make it. If you walk past the "red" patient’s room and they have a pink heart taped to the door, that means that patient is just waiting to die. Everyone hates to see those pink hearts. Pink hearts mean a parent will have to bury their child soon and that the hospital is doing everything they can to make that child as "comfortable" as possible. I have seen too many pink hearts.

Once you get past the check in desk, you can go either right or left. The floor was a giant oval. Rooms 16, 17, 18, and 19 are in front of the desk. Grant started his treatment in room 928. He ended treatment in room 929. Most of his hospital stays were in the back hallway. Room 936 was our favorite. It had a view of the new hospital being built and overlooked the West University area.

When you entered his room, the windows to the outside world were in front of you and expanded the length of the room. The parents bed/couch was under that window. The patient’s bed was centered in the room with the head of the bed up against the wall and the foot of the bed in the center of the room. The bathroom was opposite of window. They had a built in closet, desk, sink and TV on the wall opposite of the head boards. The walls were painted white, but had a lot of bright teal, blue, pink, and purple accents.

There was a window that looked into the room from the hallway. The door to the room also had a floor to ceiling window. Thank God both of these had blinds. You could open, or close them as you saw fit. We always decorated the outside of Grant's door. No one could go past his door without knowing Grant has behind it. I would hang up pictures of him and all his art work on the door. The windows of the doors were always covered in window markers. And, we always had a theme. Sometimes it was a countdown to his last treatment. Sometimes it looked like a baseball field. On his last in-patient treatment, I decorated it to look like a jail. In big letters, the door read, "Grant is busting out of the Big House!" That was a common phrase among patients on the 9th floor. 9th floor stay = being in the "Big House - aka Jail."

As I stated earlier, I asked Grant, “What do you remember about your rooms at the hospital." Below is a list of what he said:

1. Eating oatmeal in my room
2. Nurse Judy. She had black hair and cried when she accessed my port.
3. Doing art with Daddy at night. (Any time daddy stayed with Grant, I always came back to way too much glitter in Grant's hospital bed. I never allowed the glitter, but daddy did. I am so glad he did!)
4. Where the windows and bath rooms were
5. Drawing a baseball field on his window
6. Playing with a baseball toy. (He played with this toy before he had has neurological episode. He was 3!!)
7. The doll house in the play room
8. Going upstairs to Radio Lollypop.
9. The trains
10. The fish tank on the top floor.

11. The library and the movies you could get there
12. A shot he got in his leg. (My guess is that it was the PEG shot. The older kids tell me it hurts like hell.)

That is it. That is what he remembers about his treatment. A shot and a whole lot of other fun stuff. Over 2.5 years and this is what he takes away from this. WHAT A BLESSING!!

Grant, assuming all goes as planned and as I pray it does, will go off treatment on Jan. 30th. David and I are very nervous about stopping his treatment at that point. We ask that you please continue to raise Grant up in prayers as well as all the other kids, and their families, that will have to take this journey. We thank you for your consistent prayers and wish you all a very Merry Christmas!

Prayers for a family friend - Dec. 7, 2011

Wed, 07 Dec 2011 23:23:49 +0100

Hello all,

This is Melanie. I am asking for everyone who reads this blog to please send up prayers for a dear family friend of ours. I am not putting the family's name on here to protect their privacy.

Today, our friend's new born baby earned her angel wings at the very young age of 6 weeks. My heart is totally broken for the mother, the father, the sweet siblings and their wonderful grandparents. I am blessed that this sweet baby girl was in my arms for a moment and that I had the opportunity to meet her. She was just beautiful - just like her whole family is.

I don't know how a mother and a father go on after such an unexpected loss. Please pray for this family. Pray that God wraps his arms around them, and gives them all the strength to get through this. Pray for all the parents that have had to deal with the loss of a child. Nothing could be worse.

October 21 2011

Fri, 21 Oct 2011 16:27:48 +0100

David here.   We're sorry for not updating in so long. As most of you probably assumed, no news was good news. Grant has been doing well. He loves his Pre-K 4 class at St. Martha and has made lots of new friends, especially Ian, Clinton, Luke, Jacob and Joshua.

Sunday is Light the Night Walk in The Woodlands. Grant is one of the Honored Heroes this year, so he will get to be on stage at the beginning of the walk.   We are very excited about that.

Grant is following his buddy Albert Pujols in the world series. Grant told me last night that he'd like to see Albert today so he could hug him and tell him to hit a home run. Don't think we can pull that one off.

Big sister Claire is doing great as well. We continued to be amazed at how well she handles the extra attention Grant receives. Grant is lucky to have a big sister like Claire.

Grant's 32 month treatment regimen will be finished on approximately February 1.    He'll then go in every several weeks for blood testing until May 2014.

I like to write about some of the very thoughtful things people have done for our family since Grant was diagnosed. I've written here before about Ron and Nancy and the rest of their family at Tin Roof BBQ. They've been our friends since well before Grant was diagnosed. Last night they hosted yet another blood drive in Grant's honor. We are so touched that they continue to think of us. I'd also like to mention Coby and Anne Collier, the owners of J Christopher's Restaurant in Kingwood. When Grant was going through the worst of his chemo and often not wanting to eat anything, he would ask for only 2 things---carrot cake at J Christopher's and rice and beans at Skeeters(from his buddy, Raul). During breaks in his treatment, if his counts were high enough, we would take Grant to J Christopher's to eat dinner. We told Coby and Anne about Grant's love for carrot cake and of course they were touched. Since then any time we go to J Christopher's they bring out carrot cake for Grant and chocolate cake for Claire. They go even further than that. Whenever Melanie's dad goes in to pick up food to take home, they give him carrot cake and chocolate cake to take to the kids. I cant begin to explain how good it makes Melanie and me feel to know that people are thinking and praying about Grant.

August 23, 8:30 a.m.

Tue, 23 Aug 2011 13:24:01 +0100

David here.

We received the results from the remaining bone marrow and spinal fluid tests---good news on all of them. The tests will be repeated in about 11 weeks.

Grant and Claire are enjoying school. They love their teachers and seem to be making friends in their classes.

That's about all for now.

August 16 3:20 pm

Tue, 16 Aug 2011 20:37:00 +0100

David again.

Grant went in yesterday for his scheduled bone marrow and spinal tests. The first bone marrow result, the test that was false positive last time, was negative, which was great news. Now, we wait for spinal results and the other bone marrow results. It should be late this week or early next week. The waiting is always excruciating.

Grant and Claire start school tomorrow. Its unbelievable that the summer is gone and that Claire will be in 1st grade. Grant will be in pre-k 4. Given his late birthday and the fact that he missed a full year of school, it was a pretty easy decision to hold him back a year. So, he will start kindergarten next year at the age of 6.

The kids met their new teachers and most of their classmates today. They were both very excited. Grant was most excited to find that his new class room has soap in the kitchen area. Apparently his old class room was soap-less.

Special thanks to our friends, Casey and Kevin Levy. Casey has done so much to help Melanie with the kids lately. Claire and Grant absolutely love going to the Levy's house to see Casey, Kevin and their beautiful little girl, Samantha. Just like Dena Marks and her family have done so much to help us, the Levy's have been so generous with their time. It really does ease some of the anxiety knowing that Claire is with friends while Grant and Melanie(and sometimes me) are at Clinic.

July 11 2011

Mon, 11 Jul 2011 13:39:40 +0100

David here.

Grant had a great birthday weekend. My sister and her family came in from Dallas and my parents came in from Waco. The party was on Saturday at Kids N Action in Kingwood. Grant had a blast playing with his friends and cousins. He was also very happy to get so many nice presents.

After the party we went to the swimming pool where Grant spent the day playing with Claire, Melanie's dad and my nephews from Dallas.

On Sunday we had the family-only birthday party at home. We then went to the golf course yesterday evening and had a birthday dinner at Chachi's Mexican Restaurant in Kingwood. The kids were thrilled to see Father T.J. eating at Chachi's. The wait staff sang Happy Birthday to Grant and put a big sombrero on his head and whip cream on his nose. Grant and Claire thought that was hilarious.

Today, Grant goes in for counts. His counts on Friday were good, though his ANC(immune system marker) had fallen. That was not unexpected but it always makes us worry about him catching a virus or bacterial infection.

To sum it up, it was a great weekend. It's so hard to believe that Grant is already 5 years old and has celebrated 3 birthdays since being diagnosed in May 2009. He spent his 3rd birthday in the hospital getting chemotherapy and his 4th and 5th at home.

Grant's sister Claire deserves huge kudos for her behavior this weekend. The past two years have been so difficult for her, yet she continues to amaze us with her cheerful disposition and her remarkable understanding that Grant needs special attention. Of course, like any 6 year old, Claire has her moments when she gets a little tired of Grant getting so much attention. But those moments are few and far between. She really is an amazing little girl. The job Melanie has done making Claire feel special under these difficult circumstances is just incredible.

David