Today's post is titled Changes...please forgive me for the long period between updates. As you will read, we have been going through lots of change in the past two weeks. Please forgive me for jumping around while posting. As I was blogging, things would come back to me and I would jot them down. I wanted to get everyone up to date on Cory's progress so I didn't get as detailed as I have in the past. I do type these blog updates but it seems like when I have a chance to sit down and type, a doctor walks in or Cory re-learns a skill and we celebrate. I want to share with you the change in Cory...I firmly believe it was because of all of your prayers to have been sending to Heaven. Thank you, thank you, thank you!!
On November 22, Cory had the bone flap replaced and they were able to do a biopsy of the nodules in his lungs. The nodules were a type of fungus, although he is on two types of anti-fungals, the doctors wanted to get samples to see if they could narrow down what they were and treat them with a different medicine. They were able to get samples but could not tell anything from them so we are just continuing with the same medicine. As for the bone flap replacement, Dr. Whitehead had taken numerous samples from the brain area to have tested for any type of infection. All of those tests came back clean. Cory had two types of drains put in, a bulb drain and an EVD, external ventricular drain.
A bulb drain is a surgical drainage device used to pull excess fluid from the body by constant suction. The device consists of a flexible rubber bulb—shaped something like a hand grenade--that connects to an internal drainage tube. Dr. Whitehead put two bulb drains in.
The EVD is a small tube inserted into the brain to drain the extra fluid. The part of the brain where the tube is placed is called the ventricle. The fluid flows from the brain, through the EVD, and into a bag. The bag hangs on the head of the patient’s bed or on an IV (intravenous) pole. The doctor and nurse check how much fluid drains into the bag. The EVD has a device that helps measure pressure in the brain as fluid drains. It lets the doctor and nurse know if the extra pressure is decreasing. The EVD is used for a period of time and then is removed. Dr. Whitehead told us these drains would remain in for up to two weeks.
While in PICU, he started his second round of chemo. This month, the chemo schedule has changed. He is receiving his treatments for only eight days and the recovery time is 22 days. At the end of this period, we will do another bone marrow test and lumbar puncture to check if the cancer has returned.
I want to clearify something from an earlier post and from information that was sent out through text messages. Cory is not considered to be cured of his cancer. Yes, we received clean test results from the bone marrow and lumbar puncture. The doctors stressed that is only from one place in Cory's body. We don't know what is going on in other parts of Cory's body. It is not the norm for test results to come back clean in the first month. Yes, it is a great thing to celebrate and be joyful about considering the stressful situation Cory had been in the weeks before but we are always under the assumption that Cory still has leukemia. We are still continuing with the entire plan of chemo treatments. I know questions were asked about us continuing treatment since we had clean results so I just wanted to clear it up. The only way Cory will be officially classified as cured is if he has clean test results for two years after treatment has ended.
We stayed in PICU until Wednesday.We were told since Cory did not have the breathing tube anymore, we were able to move to the Pediatric Care Unit. I will admit that was a very scary thing for me. I mean, don't get me wrong, I was ecstatic we were well enough to be moved but I was terrified. The PICU nurses made us feel so secure and had formed that womb of protection over Cory, I didn't want to leave but leave we must. We were told we would move sometime that day. Finally, around 10:00 pm, we were moved to Pediatric Care Unit. The next morning, one of the bulb drains were removed. The attending doctor on the floor couldn't understand why we were in her unit because Cory was doing so well. We met with Dr. Foster that morning and she told us Cory is looking good and was responding well to his chemo. It was a great meeting to have on Thanksgiving. Cheyenne had come up the night before so we went back to our hotel room and enjoyed a Thanksgiving meal provided by our great friends from EC. Mom, Chey and I said our prayers of thanks for what God had given us and we had our meal. We were sad we could not share this meal with Cory but we knew it would only be a matter of time and we would be able to sit with Cory and share a meal of thanks. After lunch, we received a phone call informing us that Cory would be moved again. So we hurried up and returned to the hospital to pack our room and move again, this time we moved to the Neurology Unit. Yes, we only stayed in PCU for 14 hours....
Cory was still taking chemo and was doing well. He sleeps on the days when he is given his chemo through an IV drip. He finished the IV drip on Saturday but still received his chemo through an IV push. On those days, he starts to regain his strength. He is still receiving his nutrition, which is a liquid formula, through his g-button.
His neurosurgeon came in on Friday and removed the second bulb drain. He was still getting a little drainage into the EVD. They would continue to watch it to see if any additional drainage would happen.
That afternoon, we had a very special gift given to us. The therapist that had been working with Cory in PICU came to visit. She asked if we would like to get Cory up...Cheyenne, Mom and I looked at each other and said YES! She said okay, let's go. She slowly got Cory into position and she had him sitting on her knee and we were all able to give Cory a full hug. There was not a dry eye in the room....we cried, Cory cried and the therapist was even crying. It was the best Thanksgiving we ever had...
Cory was starting to feel good and was beginning to explore with his hands. He would try and rub his head and when he felt the drain lines, he would try and pull them out. Since Cory was getting that active, we had to restrain his left hand. It is heartbreaking as a mother to make the decision to restrain your child, to know he wouldn't understand at this point why his hand was tied to the side of the bed but it was done for his best interest. Cory decided that he didn't like it and did things his way. He would move his body down to where he could touch his head with his hand or he would get mad and actually pull out of his restraint! I laughed and thought it was appropriate for Cory to do so but immediately worried on what to do then. When the decision was made to restrain him, he still had lines and drains attached that would monitor his condition, what do we do now that he is pulling free? The nurses said the next step is something they call a "no-no" It is basically a brace that is 7 inches long with Velcro and you wrap it around the area of the elbow. You are not supposed to be able to bend the elbow to get close to the face. I agreed and with that decision, I lost Mother of the Year...I had the feeling of total shame. I know I was doing it for the health of my son but damn, it hurt. Luckily, we only had to wear that thing for a day. On Saturday afternoon, Cory's neurosurgeon came in and removed the last drain. He was not draining anymore fluid so it was not needed. I was very relieved to know we were finished with those things and the restraints.
I had told the therapist that Friday, I wanted to start working with Cory as soon as possible as much as possible. I didn't want to wait any longer and she agreed. Cory had been immobile for five weeks and he needed to start moving again. That weekend, he had physical therapy and occupational therapy once a day. When the week started, he was getting it twice...once in the morning and once in the afternoon.
Now, this is where I have to change up the way I explain how things are going. Instead of doing a detailed explanation of our day, I am only going to tell you how Cory started that week and tell you where we are as of today.
November 29
Cory started that week only able to move his left arm and leg with purpose. He moves his right leg slowly and does not recognize his right arm at all. He does not speak and seems to not hear. He has no expressions and his only form of nutrition is by formula through his g-button in his belly. He can't support his weight on his legs, can't move his feet to walk. He can't sit up on his own and has his days and nights mixed up. He does not have any tear production. We don't know if he can see and if he can, we don't know how far he can see. He gets upset when he doesn't feel hair on his head.
December 7
Cory can move his left arm and both legs with purpose. He recognizes his right arm and there is some movement returning. He can support his weight and he can walk with assistance. He can sit without support and he can crawl on his bed to his pillows and lay down. He can hear, we had his hearing tested, and he is starting to say three simple words. He smiles, he cries, with tears, and his tickle reflex is slowly returning. He is eating table food, which means he will either feed himself or if he is tired, we feed him, and we do not have the formula feeding at all. He is no longer upset he doesn't have hair. He will give hugs and kisses.
I have to add, Cory can do all of this and more only if Cory wants to do it. He still has that temper and if he is mad, don't expect him to do anything. He will shut his eyes and just lay there. It is very frustrating to see him shut down but it makes my heart sing seeing the temper that was there before this happened. My mom and I have come to the agreement that Cory is realizing alot of things about his condition. He knows something is wrong and he has mood swings especially in the afternoons. Monday, he said his first word...home. He would say that word as he was trying to climb out of bed. I told him we all wanted to go home but he must get well and he must re-learn how to walk again. He just kept saying that word and cry and squeeze our necks. He would give kisses and hugs like that's all it would take to get to go home. I told him I wish it was that easy but we have lots to do. I told him he is very sick and the doctors are working to heal him. I told him we have lots of work to do too, re-learning everything again. I told him we will all cry together but we will be here to help him. Cory has a long road ahead of him to recover from his stroke and to beat his cancer but he will do it, as I have said in earlier posts, I know it in my heart. I know we will walk out of the doors of TCH in the spring just like we walked in October 19, hand in hand, only this time...he will not be sick, he will be healthy and whole....