We're back home!

I finally got to bring Payton home from the clinic and was able to convince our doctor to let us go. We are both exhausted from a 9 hour day and and really glad to come home. We are hoping that we can stay fever free and out of the hospital this weekend. I was looking at Payton today in the clinic and feeling really sorry for him and how crappy he felt. It was such a good feeling to think that this is the last time he has to go through this. The best words that I can use to describe this is, it's been a roller coaster ride to remember. We have another appointment at the clinic on Monday, hopefully we make it that long. We are exhausted from a long day and heading to bed. I love you little guy. You were so brave today!

Another fun day at the clinic!

We are back at the clinic today. Payton awoke this morning with a nose bleed and I knew between that and the bruise on his port area that his platelets were low. I got in here and insisted that they access his port, so that he wouldn’thave to be poked twice. I really don’t want Payton to be put through more than is necessary. Sure enough his platelets were really low at 8 and his HGB as well at 7.0. Payton will get both platelets and red blood cells and it looks as if this will be about a 9 hourvisit; been here since 7:30 and should be out of here roughly around 4:30. I felt really bad, that they had to access him though, since he is really bruised and sore. Really glad I brought my laptop, for something to do. The nurse called Dr. Bowman in here, because she thought that Payton might possibly need to be admitted, she said that he looks pretty lethargic. Iam arguing this, because he is not fevering and I told Dr. Bowman that if he fevers, I will have him back here. Dr. Bowman said that we will wait until his transfusions are done and see how Payton looks.

I also talked with Dr. Bowman regarding Payton’s EKG. I was really glad I got to see him, because I wanted to speak with him about it, since I trust him entirely. I had questions that I needed answered in order to ease my mind. Dr. Bowman said let’s notworry about it for now. He said, that Payton has been hit extremely hard with chemo and let’s give him a chance to rebound and we will retest soon. I really needed to hear that. I just love this guy and really trust him. With some of the other doctors and nursepractitioners, you really have to be your child’sadvocate here. When I was here for my Wednesdayappointment, I was told to come back in a week. Ireplied with his platelets at 32,000 and HGB at 8.1and you will see him in a week? I know how quickly Payton can drop and knew that we’d never make it that long. I insisted that they see him before the weekend. We might not even make it through the weekend without fever, but we are really hoping to.

Hopefully, we will be getting out of here today; Iwill keep you updated on how the day goes. For now, Payton is sleeping and is really tired. Can’t blame him with the low counts he has. Thanks for everyone’s love and encouragement and for getting us this far. We are so anxious to be done and glad Payton only has one more outpatient chemo treatment on Wednesday. This will be a day to celebrate. Have a good day, we loveyou all!



Payton has shed a lot of tears today.


Payton getting Platetlets and Red blood cells.

When my parents were here last week they left some presents for Payton's Birthday in April. Payton is really excited to open them. I hope he can wait.

Back to the clinic for chemo and CBC!

We were back at the clinic today to check counts. It was a horrible clinic visit. They were so slow and what should have taken minutes, turned into hours. I am extremely exhausted with a migraine. Payton received his 2nd-to-last outpatient chemo, one more to go and we will be done. I will not miss that clinic at all. Payton’s counts were trending down and he still hasn’t reached his nadir, so we need to be really cautious and keep him isolated, since he will be most susceptible to anything in the next few days. When they were de-accessing Payton’s needle he was bleeding a lot. I looked at the nurse and said, is this normal? I found it odd, since I have never seen it bleed like that. She acted concerned as well. I want to make sure that we don’t have any accidents or falls at home since his platelets are low. They also put Payton on an antibiotics for his bottom. We will be back to the clinic on Friday to check counts and to see if we need any transfusions.

We got back the results of Payton’s Echo/EKG today. Payton’s Echo was fine, but his QT level on his EKG, was a little high. Normal levels are below .44 and he was .46. They want to do another EKG in the next few weeks and also test his electrolyte levels. It basically means that there is a longer interval between the “Q” and “T” wave points- shown on an electrocardiogram or heart monitor. This shows how long it takes for the heart to return to “normal” after contracting and pumping blood through the body. I am trying not to worry about this, but it’s hard especially for me since I am such a worry wart about everything and also since I know that the chemo drug Doxorubicin can cause heart damage. Please continue to pray for Payton that the treatments will be effective and that he won't suffer any serious long term affects.
The silver tray. The silver tray is used when they have to access Payton’s port. Whenever he sees this or hears it coming, he screams. I can hardly blame him.

Fun on the trampoline!

The weather was great today. It felt like spring and the temperature was in the high 70’s. The kids and I spent some time outdoors grilling and playing on the trampoline. Payton really wanted to play, but kept complaining that his tummy and bum was hurting. I know that I’m a little picture crazy, but I know my little boy isn’t going to be bald for too much longer. Payton’s head feels so soft; it feels like a baby’s bum. I remember the day that we had to cut his hair really short, I couldn’t stop crying and I never thought I would get used to him being bald and now I think I will miss it just a little.

Deceptively Delicious!

Since we are going to be spending more time at home, I am motivated to start cooking better. My kids definitely have a hard time eating vegetables. I received a recipe book from Chad for Valentine’s Day, by Jessica Seinfeld about vegetable purees that you can add to your foods.

I decided to attack the puree process this weekend. I made her banana bread with whole wheat flour, bananas, cinnamon and CAULIFLOWER! Surprisingly, the kids loved the bread. I also tried her macaroni and cheese tonight with CAULIFLOWER. The kids ate that as well. I am not a huge cauliflower fan and can taste it a bit, but still liked it, so I want to try some of the recipes with carrots, sweet potatoes, or squash. If anything, it is giving me some new ideas of how to add vegetables to my own recipes. I also went out, splurged and bought myself a rice steamer, I always thought that rice steamers were for rice only, but to my surprise you can steam many different veggies in there without taking out the nutrients. One of my favorites was what Chad made on Sunday, tomato, basil, garlic marinated chicken on the grill with red potatoes and carrots cooked in my new steamer and it only took 20 minutes to steam.

Another great day at home!

We are so glad to be at home. Hopefully we will no longer have to sleep on a hard plastic twin sized bed or have to change our clothes, comb our hair, eat our food with the possibility of an audience of doctors, nurses or cleaning crew. It is really a good feeling.
Payton is really doing well considering. He is still complaining of his bottom hurting. Chad and I have joked that some days it looks as if we are the ones that have just had chemo and not Payton. We are counting down the days until Payton’s GCSF shots and meds are over. He really hates them and I know that Chad hates giving the shots as well.

Today is a beautiful day here in Texas. I am feeling such excitement that spring is on the way and we are almost through and can enjoy some time outdoors and at the parks without the fear of Payton getting sick. It’s crazy to think that in a couple weeks our life could resume to some normalcy.

Payton is still sleeping in our bed and we walked Savannah up to bed and Payton told Savannah “sweet dreams, Sissy.” And then he said “I have a nice room”, of course referring the room that he never sleeps in.

We're having a party!

Day 3 and finally going home!

Day 3 and getting ready to go home. I am so excited and yet so scared as well as we finish with this final round of chemo. We have done everything possible and now it is in the Lord’s hands. I have complete faith and yet this is my son and I am still really scared. I have called this our home away from home and it has been. In the evenings when most families talk to one another over dinner or visit with neighbors while grabbing the mail, we have done the same thing but we have done this on the 3rd H/O floor with our nurses, child life specialists, cooks, and security guards. These people have become more than just people providing a service to us and so the idea of not seeing them again and the idea that this routine we’ve come to know is over is strange simply put-wonderful and exciting but strange. How do you begin to thank all the wonderful people that have been placed in our lives?

I also ran across this and the name sounded familiar. (http://www.childrensmemorial.org/depts/pathology/wilms.aspx) After looking at Payton’s pathology report, Irealized that this is the second pathologist that re-staged and changed the histology of Payton’s tumor. You can’t tell me that this is coincidental. It’s made me stop and realize that the Lord's hand was involved. It was interesting to see a face to go with the name. This last treatment was tough and still not over, butI don’t need to go on about how hard it was, to watchPayton be tied to his room and how painful it was to watch Payton be poked because you all know all that, I’ve written about it in detail before. It’s going to be weird walking away from here. The people we have come to know I will never forget, they will forever be in my heart and in my mind. They were our family for a year and I have found such great strength and have such love for each of them. I am excited to leave and yet really sad as well since I have grown to love each and every one of these kids so much, how can you not? They have taught me so much, more than they will ever know. They have shown such courage in their struggles and I have learned so much from each and every one of them. They have shown me by example how we should act in our lives and I will walk away today standing a little taller, a little braver, with so much love in my heart thanks to all of them. I pray that our Heavenly Father will watch over them and their families, for they are the bravest and most courageous souls. Please keep all these kids and their families in your prayers, I love them so much.

Only time will reveal the truth of the side effects in Payton’s treatments and I understand my part in this. I only hope that we don’t have to deal with hearing loss, heart damage, infertility, kidney problems etc. I’m prepared to be labeled an overcautious mom. What I know for sure is that it doesn’t matter what side effects might come up later, for now he’s alive and home. We will leave that in the Lord’s hands as well.

We are looking forward to Payton getting his hair, eyebrows and eyelashes back and to get our little boy back. Most heartfelt thanks to everyone that helped us through this. It means the world to know we have the support of good people. We couldn’t have done it without you.

Payton made it home and is happy to be at home. Payton has come so far in his vocabulary and being able to communicate to us. When he was leaving the hospital, he told his nurse “put my noodle in the garbage” and then said “bye, bye room. Bye, bye, nurse. See you later.” When he arrived home he said “Mom, Baby’s tummy is hurting.” It made me wonder how many times he has felt this way and hasn’t been able to communicate it to us. Payton was crying this afternoon and I said, no more crying he replied by saying “but I want to.” I know that I’ve said this a hundred times over, but Payton you are the bravest little soul. I love you more than words can say. I am so proud of you and am so blessed to be your mom. It’s almost over little guy, Hang in there!

"More CoCo Puffs, please"

"More Popums, please"

Me, Dr. Heym & my nurse Amber.

"Giving

my

noodle

a

drink."

"Get my noodle out and put it in the garbage."

"Hurry up with those discharge papers"

"And get me out of here"

Day 2 in the hospital!

They didn’t get Payton’s chemo started until 3:00 a.m. this morning, so Dr. Heym said that we will need to stay another night. It’s hard to believe that Payton will be done with his large chemo rounds tonight and this is our last hospital stay unless he gets sick.

Payton awoke really cross this morning, with really puffy and sunk in eyes. He has gotten better as the day goes on, but is still pretty irritable. Payton’s face looks pretty sore today and he has a big fat lip. Another day though, I decided to let Chad stay last night and go home and get some sleep since I had a really bad migraine. Ten hours of sleep and I feel like a new person. I don’t remember the last time I got that much sleep. We should get out first thing tomorrow morning and we will be thrilled to be back home.

Here are some pictures of a couple of Payton’s favorite nurses; Amanda and Victoria.

Back to the hospital to finish our final round!

I’m warning you to read this at your own risk. Have you ever had a really bad day? One that you just wanted to hit or kick something to get all of your frustrations out? We’ll I had one of those days. And I actually needed to take my frustrations out on something; I was outside and saw my fountain drink and decided to kick it as hard as I could, it actually felt really good. The hospital had just called and informed me to bring Payton back to the hospital within an hour. I was outside playing with Payton while he was watching all the neighbor kids play outdoors. I informed him that we had to get in the car and leave. Payton started to scream and fight me and told me he wanted to stay home and play. As I was trying to get Payton’s jacket on him, he continued fighting me and went to run off and did a head dive into the pavement of the driveway. Payton’s face and mouth started bleeding and he started to scream. I cleaned him up as best as I could while he screamed how bad it was hurting him. We decided we better get headed since we were running late. Payton was crying in the back, the most heart wrenching cry that he wanted to go home. I started asking the Lord; why on earth would you do this to this little boy? Why are all these little kids outside and able to play and he has to go to the hospital and get poked and have nasty chemo put into his little body. Why, why did this happen to my baby? I cried the whole way here and knew that I had to let it out. Maybe I have been keeping it in a little too long. When we arrived to the hospital the nurses must have noticed my red face from crying, because they all smiled and greeted me. It’s amazing the people that we have met here and the great nurses that have been placed into our lives. They all immediately made me feel better. So here we are back again. We will probably get out pretty late tomorrow since they have to hydrate him for several hours before starting chemo. I am so glad this is our last round. I’m honestly not sure how much more I and my family can take. Payton is doing well considering, his face looks pretty beat up and he has a nice fat lip. Sorry for the drama, I just needed to let my frustrations out.