A celebration....

Yesterday, October 19th, was one year since our lives were turned upside down. I had been feeling so down and depressed the past month, I decided to take the sadness and turn it into happiness.

We had a balloon release Wednesday afternoon at Hutchins Playground. We had 67 orange balloons we released. Those balloons represented Cory's battle with leukemia. They had cards attached to them with the names of the medical staff and departments we were in contact with at Texas Children's Hospital. We had numerous white balloons we released as well. Those represented hope and faith. Any guest could write a personal message on a card and it was attached to those balloons.

It was a beautiful afternoon to have the release. The wind wasn't blowing like it had been for the past two days and it was slightly warm. We had lots of family and friends that came and celebrated Cory's one year "birthday" and the celebration of God's gifts to all of us.

I read his bible verse that hung on the door to his hospital room and hangs on his bedroom door at home. I thanked everyone for all the love, support and prayers they gave us during the 159 days of our stay in the hospital and with that, we released our balloons....

These pictures do not begin to capture the sense of peace the balloon release gave us. I truly believe God was there yesterday...the balloons stayed together the entire time as they floated up to Heaven. There were three balloons that were caught in a tree. When they were finally freed, they didn't slowly float up, they moved fast, almost like they had to catch up with the rest for fear of being left behind.

There were three orange balloons that didn't make it to the release. One was popped and the other two didn't have enough helium to rise. The cards had the names of Dr. Michelle Redell, Dr. ZoAnn Dreyer and the Renal Dept. I guess God was telling us it is not time to let them go. Dr. Redell is Cory's primary oncologist and we see her once a month, the Renal Dept. is monitoring Cory's blood pressure meds and we are keeping in constant contact with them. As for Dr. Dreyer, at this time we are not in contact with her but maybe we will be in the future.

We thank everyone for taking time out of their day to join us for this celebration. It means the world to Cheyenne, Cory and myself that you remember us and keep our little man in your prayers.We truly do not know what we would have done without your support and love during those days and it is a debt we will never be able to repay.

Love to all,
Jenn

A quick note...

I wanted to post this note to let everyone know that we are at home. We were discharged from the hospital on April 8, 2011 at 5:30 pm. We had a crazy month leading up to the discharge and I will be posting that soon.



Jenn

A light in the darkness....

January, 2011

Our month of January was pretty quiet...no infections, fever or illness. Cory spent his days going to therapy twice a day and having speech therapy three times a week. His counts dropped and rebounded quickly and we were able to finally come home for some down time. The time at home flew by so fast and it felt so good, we didn't want to come back but back we came. We had our usual bone marrow and lumbar puncture procedures and they came back clean....Praise the Lord!

February, 2011

We checked back into the hospital and started our treatment. Cory handled this round of chemo like all the others. Cory has been such a good patient throughout our journey. Granted, he didn't really know anything the first month because he was in PICU and sedated but after that, he has taken everything in stride and didn't cry or throw a tantrum. I am in awe of him because I don't know if I could be that easy going. Yes, he does get depressed when he is attached to his IV pole with tubing running everywhere but after awhile he puts a smile on his face, unplugs it and pushes it where he wants to go.

In the early morning of Tuesday, February 8, Cory developed a fever, 102.5. We had a floater, a nurse that fills in where ever she is needed throughout the hospital, that morning and apparently she didn't realize the seriousness of a cancer patient with a fever. It was 1:30 in the morning and she told me labs would not be done until 2:00. Around 2:00, she finally did labs and sent them off. We then received platelets and finally at 5:20, Cory received the first round of antibiotics.

Let me explain the seriousness of a fever. When Cory receives his chemo treatment, it stops his bone marrow from producing white and red blood cells and platelets. Since that is not being produced, he does not have an immune system. We all know that white cells attack any type of infection and fever usually signals that some type of infection is taking hold. Protocol here on the floor is when a patients fever goes over 100.4 twice in a short time frame, it is assumed an infection is present. The patient is hooked up to fluids and antibiotics. Labs are run every morning to watch the infection. Our nurses know the importance and move like lightening to have the patient taken care of.

We had battled Cory's temp for 24 hours, it was consistently 101 to 103. The labs came back positive on Wednesday and it showed some type of bacterial infection in his red line. His fever wasn't as bad as it was on Tuesday, it was now running 99 to 101. He was getting two types of antibiotics and was being given lots of fluids to keep him hydrated until his immune system kicked in to produce white cells to attack the infection. There was nothing we could do but just watch and pray. We continued to give Cory antibiotics and run labs. After the initial lab came back positive, the following labs came back negative. Since he was still running fever but the labs came back negative, the doctors thought he had a fungal infection. He was given a different anti-fungal in hopes it would knock it out. He was still running fever but not near as high as it was. He was running anywhere from 99 to 102, with the 102 spikes coming farther apart. His immune system finally kicked in and started to produce white blood cells.

On Sunday, Cory's fever finally broke. Praise God and your prayers for that. Since his fever broke so quickly after the new anti-fungal, they didn't think he had a fungal infection. They scheduled a CT scan and an echo cardiogram to see if Cory's white cells were attacking anything and if any type of fungus, virus or bacteria had attached to his heart. Both tests came back negative...Praise God! So, since negative on the bacterial and no new fungal infection, they think the long period of fevers might have been caused by either a cold or the flu. I am just glad the fevers broke...

That illness had been a setback for him. He had lost the sparkle in his eye because he had been hooked up to his dreaded IV pole again. It was harder this time around because he sees more tubing and fluid bags and he hears the docs saying it will be several days before he will be cut loose from the pole. He had backtracked in his therapy as well. He had just regained the use in his wrist, being able to move it side to side but we will work and get it back again. I had made the decision back in January not to go home again until we finished treatments. I had wanted to stay here and get them finished because it was so hard to pack up and leave home to come back here. After this illness, it was decided by myself, the doctors and therapists that Cory needed to go home. He needed out of here, a little bit of freedom...and freedom we had.

February 20, 2010

We celebrated Cory's birthday here...Star Wars! I decided that it would be a celebration of his birthday and of his life. Cory had been through so much in the past several months that we needed to have some happy times. So, we started the celebration Saturday morning. I had told the Floor Nurse Manager that I wanted to let the PICU nurses know about the party so they could come and visit Cory and she said she would be able to do that. I decorated his door and room with Star Wars stuff and we had sandwiches, chips, cupcakes and cookies. We had some of the nurses come up to visit and they were amazed with the progress Cory made in the past few months.

On Sunday, we had lots of visitors on his real birthday. We had family and friends to come spend the day with Cory. Dr. Ryan and Dr. Tiffany came and dropped off presents and some of the nurses brought presents as well. But, the best present Cory was given that day was to be disconnected from his IV's for the afternoon. Cory enjoyed his day and received lots of Star Wars stuff. By the end of the day, we were all tired, full of sweets and very, very happy.

Monday, we were given the news that we would be able to go home for a break. Cory was so happy, he did his little happy dance while he was doing therapy with Miss Danielle. When we woke up Tuesday morning, we slowly started packing our stuff up to come home. After a wild trip across town to pick up Cory's meds and a disastrous visit to the pharmacy, we had faxed the prescriptions in around lunch and at 4:30 they still weren't ready...grrrrr, we finally made the trip back to EC for several days break...Oh how that exit sign to EC looked so good.

Home 2...

We will be here until Monday...we go back in on Tuesday for our last two rounds of chemo...but it is a great blessing to be able to come home for a few days...

Jenn

Home....

It is defined in Webster's Online Dictionary as:

1. a place of residence

2. the social unit formed by a family living together

3. a familiar or usual setting: congenial environment; also, the focus of one's domestic attention

4. a place of origin

      at home----

         1. relaxed and comfortable; at ease

         2. in harmony with surroundings

         3. on familiar ground.

I am sure you are wondering why I am giving the definition of the word...because this is where we are this weekend...home.

In our room, there was a piece of dry erase board. I would write different information on that board such as Cory's weight, when we started therapy, when he was able to take his first bath and when he started going to the restroom on his own. I also wrote the date and how many days we were in the hospital...as of January 19th, Cory was there for 92 days....

Our current attending physician saw the board and asked about it and I told him what that number represented. He couldn't believe it...he said we are going to do everything we can to get you home. I debated whether this was the right thing to do seeing it was cold and nasty outside and I didn't want to push our luck with Cory getting an infection but God knew better...He kept whispering in my ear it was.

Monday, the wheels started turning to be released on Wednesday. By the end of the day, I was completely overwhelmed by the huge responsibility it would be. I had to learn how to administer meds by Cory's g-button and how to care for his PICC line and give his anti-fungal as well. The button meds were easy, fill a syringe, open his button, give med, give a flush with sterile water and close. The IV...not so much. The stress of dealing with his IV, which is an opening to his vein, is extremely overwhelming and something I do not like dealing with at all but I suck it up for Cory. I do it because it is what is best for Cory...

Tuesday evening was spent packing our stuff and loading two vehicles...yes, I said two...I can't believe the amount of stuff you can accumulate while in the hospital but I will spare the boring details and just let you know after five loads we had it completed.

Wednesday morning, while we were waiting for our discharge papers, I noticed the date...January 19th...exactly three months from the day we entered Texas Children's Hospital. Kathy Ware, who works at the hospital and is a good family friend, came to tell us good-bye and we started talking about our stay. I told her it was exactly three months and the 19th wasn't such a good day and she said that now it is, we are going home.

We drove up the driveway and I helped Cory out of the car. He walked up the sidewalk laughing and smiling and could not get up the steps to the house fast enough. He remembered his way around the house...that told me it was the right thing to do...thank you God for reassuring me it was the right thing to do...

How things change....

Can you believe I have finally sat down and updated this blog?!?! I am sure some of you are thinking 'Well, it's about time you shared what's going on with Cory.' I want to apologize for the long time between posting...Cory keeps us, Mom and I, on our toes during the day and when he finally goes to sleep at night, I am just too tired to blog. Tonight, I drank some caffeine too late in the day so I have the energy to stay up and post.

Quick rundown of Cory's progress:

-he can walk without assistance

-he can eat without assistance

-he is trying his best to talk again, he will move his lips but the sound is so low we can't hear it BUT he will say 'No' when he doesn't want to do something...some things never change. :-)

-he can brush his teeth

-he throws a fit when he takes a bath

-he still loves Taylor Swift, country music singer

-he still loves his Nintendo DSI, handheld game

-he can write his name

-he loves all his therapists and nurses. He gives the smiles and hugs when he sees them

-he is starting to understand more

-he can put on his shoes by himself and gets dressed with very little help. He has a hard time getting shirts on

-he can still give the looks he is know for...if he is mad at me, a look that says 'would you do something already?!?'or when he is trying to pull a fast one by you

December 8, 2010

I will start from here and try to give details..."try" being the key word...

We stayed on the 10th floor until December 5, 2010. Our counts started dropping and our doctors decided it would be best if we moved to the 9th floor, the cancer floor. Our nurses are trained to handle and watch for things that the nurses on the 10th floor are not, any reactions to meds, any open wounds, how to handle his IV's and things like that. We have a very nice room but not a good view. We overlook a parking garage and the top of St. Luke's Hospital but we do get to see the helicopters land at St. Luke's and if we look to the left, we can see Life Light land on top of Methodist Hospital.

Our days consisted of therapy in the morning and afternoon and were pretty quiet until Wednesday, December 8, 2010.

A little background...

Cory has what is called a PICC line inserted into his upper arm. It is inserted in a peripheral vein and then advanced through increasingly larger veins, toward the heart until the tip rests in the distal superior vena cava, the large vein that brings blood from the head and arms to the heart or to the cavoatrial junction, the point at which the superior vena cava meets and melds into the superior wall of the right atrium of the heart. The PICC is a form of intravenous access that can be used for a prolonged period of itme so we don't have to stick Cory every time meds need to be given or blood drawn.

This is not Cory's arm, only a picture I found on the Internet to give you an example of what it looks like.

This is how the PICC is inserted.

We had been having issues with the PICC line since we left PICU. We could not get blood return in the gray port, only out of the red and even then, we had to position Cory's arm in a certain way because there was a bend in the line at the shoulder. The problem with the gray port was a type of film had developed over the end. It was like a flap meaning when something was pushed through it opened, when something was being drawn out, it closed. It also was gradually getting worse because the flap was not letting anything go through. We had been able to manage with the problem but when we moved to 9th floor, the bottom dropped out. That Wednesday morning, we had someone come in and try to break loose the flap. It worked but little did we know what it would cause that afternoon.

Wesley and I were sitting with Cory trying to figure out what he was saying. Cory had something on his mind and was trying to tell us but he just couldn't say loud enough for Wesley or I to hear. I got up and grabbed his MagnaDoodle and wrote his name at the top. I put the pen in his hand and told him to write what he was trying to tell us...He was frustrated, we were frustrated. He started moving the pen around and wrote this:

Well, needless to say tears flowed and smiles abound...it might not look very good but it is his name written with his left hand. As I was hugging him, he felt awfully hot. I asked Wesley if he thought so and he agreed. We called a nurse to check and she said his fever is elevated and he was red and with those statements, things started changing. The nurse drew a blood sample from the red port and gray port and sent it to the lab. Cory was immediately re-connected to his IV in both the red and gray port with fluid drips and was not allowed to be disconnected until further notice. We received word from the lab that he had some type of staph infection. He was put on two antibiotics, Zosyn and Vancomycin. This was all completed within a two hour time frame. I have never seen people move so fast but thank God they did. Cory was facing a life-threatening infection and we caught it in the nick of time. He received these meds every eight hours and we had to do blood work every morning to see if the antibiotic levels were high enough to fight the infection. By that Sunday, December 12, 2010, the doctors were confident Cory had beat the infection so they discontinued the Vancomycin but left the Zosyn on for the remainder of the 10 days. We were very lucky...it was determined that the infection was caused by the flap that had developed on the gray port in the PICC line that was dislodged. We decided Cory would have this line removed and a new one inserted into his left arm.

We continued with our days recovering from the infection and going to therapy twice a day. Cory regained the strength he lost and then some. He was slowly becoming aware of his surroundings. He re-discovered his right side but at that point did not have any movement in his right arm. Toward the end of the week, we had a schedule worked out for Cory the week before Christmas. We were at the end of our monthly chemo cycle so that meant bone marrow and lumbar puncture procedures. Those were scheduled for Monday and we were also going to do a flow study on Cory's spinal fluid. It is a procedure where contrast is injected into the spinal fluid, picture are taken and then pictures are taken again 24 hours later. We needed to know how the spinal fluid flowed around Cory's brain. If he passed, he would receive chemo into the spinal fluid. If he didn't...well, I really don't know what would happen. On Tuesday, we scheduled a dentist appointment. What?!?! Why a dentist appointment while Cory is fighting cancer? Cory needed to have his teeth cleaned, x-rays taken and two teeth checked for possible cavities. This was my decision because I wanted it taken care of now while we could and not wait and the cavities get worse and we would be in a position that we couldn't. Wednesday, we didn't have anything scheduled. Thursday, we were going in to change the PICC line and Friday was Christmas Eve.

Results of the week:

Monday: Cory did good during the procedures. His bone marrow and lumbar punctures came back clean!!!! and the flow study contrast given and first set of pictures taken.

Tuesday: He had a good report from the dentist. No additional cavities, several loose baby teeth, sealants applied to his molars and the cavities filled. Second set of pictures taken for flow study.

Wednesday: Recovery day from above procedures. Passed flow study, chemo would be administered to the spinal fluid.

Thursday: PICC line replaced and chemo given. Third round of chemo started.

Friday: Recovery day from the week's procedures and spending the afternoon with family.

We had a special guest come and stay with us starting that Wednesday evening....CHEYENNE!!! I had two of the happiest children that evening...Cory was happy to see his Sissy and Chey was happy to see her Bub. Cory did not let go of her and he did not let her out of his sight. Cheyenne slept with Cory the week she was here and they looked like a set of twins, on their sides, facing each other and holding hands. I took numerous pictures of them but promised Cheyenne I wouldn't post them because she had morning hair.

Christmas Weekend

We had a long Christmas weekend. It started with the kids spending time with their dad and Shanna Friday evening. Saturday, my dad and Wesley's dad and sister and her husband came to visit. Sunday, Wesley's mom and my Mom came. It was wonderful to be able to spend the holidays together. I know you are saying 'But you were in the hospital?' Yes, we were in the hospital without Christmas lights and a tree, not able to attend any type of Christmas Mass, didn't have a Christmas Dinner but Chey, Cory and I had each other and that was enough for us. It didn't matter that we were here eating McD's at 2:00 Christmas Day watching Cory continue with another round of chemo...we sat together, saying our prayers of thanks for Cory being here, all the blessings we have received this year and thinking we would gladly give up this year's traditional Christmas to have more Christmas's with Cory at home in the future. I am posting this one picture of the kids Christmas morning...Sorry Chey, I couldn't resist...Love ya baby girl!!!

My Best Christmas Present Ever....

I am going to stop here for the night. My next post will catch everyone up...my eyelids are getting very heavy.

Love to all,

Jenn