Wednesday June 4, 2014
Hunter started having headaches and double vision. We already had an eye doctor appointment for Friday (yearly check-up) so I just gave him some children's Advil and told him we would talk to the doctor. At the doctors appointment we told them what Hunter was experiencing and he decided to dilate his eyes. Once his eyes were dilated, he noticed that the optic nerves in both eyes were swollen. At that time he suggested that we go to a Nuero-Opthomologist for a consult. The one suggested to us wasn't able to see us until Friday the 13th. I was not comfortable with waiting that long, so I googled a doctor that was affiliated with Scottish Rite Children's Hospital. They made us an appointment for Monday. At the appointment I scheduled for the 9th, the doctor did a thorough examination.
As he was doing the examination on Hunter, he did notice the swelling of the optic nerves and told us that we needed to go across the street to have an MRI done immediately. Once at the hospital they chose to do a Cat-Scan because we could get it done faster. Hunter went in for the Cat-Scan like a CHAMP. He was joking with the nurses on the way that the hospital bed ride was the best ride he had ever been on. The doctor told us that we would have the results back in an hour so I told Marc to take Cameron to get something to eat. 5 minutes later the ER doctor walked in asking where Marc was. At this point my stomach dropped to the floor. When Marc was back in the room the doctor proceeded to tell us that there was a tumor pressing up against the brain stem and it was about the size of a tangerine. They then began telling us that he needed to have surgery immediately to place a drain in his brain to relieve some of the pressure before they could even do the surgery to remove the tumor. I became hysterical and my brave boy looked at me and said "It's only a tumor mom. I'm in the best place possible." Hunter was rushed into surgery for the drain about an hour after being in the ER.
When Hunter came out of the surgery he was alert and asking when he could eat since he had not eaten all day. Hunter was placed in the ICU unit and we were told we would have the brain tumor surgery on Thursday or Friday. Tuesday June 10th, Hunter was scheduled to have an MRI to make sure the tumor had not spread to any other parts of his brain of spine. The MRI involved contrast and no contrast. This procedure took three long hours. We got the good news that it was not in the spine. The doctor did tell us that he wanted to do the surgery Thursday because we needed to get it out. Hunter came out exhausted and slept a lot of the afternoon but when he woke up he was so excited because he would be able to eat the next morning, he had not eaten since Sunday afternoon due to his headache. He made me promise him that I would get him bacon and eggs, which is one of his favorites. Wednesday morning I ordered Hunter a huge plate of bacon and eggs, pancakes, applesauce, milk, and a Coke (another one of his favorite thing).
Just as the food was arriving, Dr. Risner, the neurosurgeon, told me that he wanted to transfer Hunter to Eggleston's Children's Hospital for a few hours so he could then be sent over to Emory to have another procedure performed prior to the brain surgery. We were transported by ambulance to Eggleston, where we waited for the surgeons at Emory to be ready for us. We were then taken by ambulance again literally across the street, for an angiogram embolism. This procedure was being done to try to freeze off some of the veins that were leading to the tumor, which would decrease the amount of blood that might be present during the surgery on Thursday. The doctor at Emory came out after an hour and told us that they did the angiogram but it appeared that the tumor was not vascular, so they would not have to do ahead with the second part of the procedure. Hunter was taken to the recovery room at Emory, where he had to lay still for 4 grueling hours, before we could be transported by ambulance, for the third time, back to Scottish Rite. Thursday morning they came into the room at 7:30 to begin getting Hunter ready for surgery. They had told us it could take 6-10 hours. Marc and I walked with Hunter down to the operating room and were able to spend some time with him before they took him into the operating room. At this time Hunter finally began to become frightened. We told him how proud of him we were and that we knew everything would be fine. We reminded him that this was going to help take care of the double vision and the headaches that he had been having. Once Hunter was wheeled intot he operating room, Marc and I both broke down. We walked back to the ICU where we had many of our family members waiting for us.
As the day progressed the nurse from he OR would call us to give us updates on how Hunter was doing during the surgery. We had friends also show up throughout the day to offer us support. Thirteen hours later, the doctor came to us and told us he had done what he could and it was now in Gods hands but he felt he removed 98%. As we continued to wait for Hunter to be brought back to his room in ICU the doctor came back out and told us that he was excited because he had asked Hunter to squeeze his hand, and he did. Hunter was brought up to his room on a breathing tube and remained asleep the rest of the night. We were told that we would not have the pathology report back until Tuesday or Wednesday of the following week. Friday when Hunter woke up, still out of it, he was unable to communicate with words. The neurosurgeon had warned us that this could be a side affect which could last up to 6 months. Hunter slept a lot of the day but there were times when he woke up and looked at us. He was unable to move his left arm and was very weak with his left leg. Every once in a while we thought we heard a grunt :)
On Saturday Hunter was a lot more alert than he had been on Friday but he was still tired. We started communicating with him by asking him simple questions telling him to give thumbs up or thumbs down. When he looked at people he appeared to be looking through us but he was able to answer questions about what color shirt someone was wearing or what color their hair was. Sunday was a lot of the same as Saturday except we heard a lot more grunts. Hunter was also awake a lot more of the day. When he would sleep, he would sleep hard. He seemed to be in good spirits even though he was having trouble communicating. When we would ask him to squeeze our hand he would follow the directions. He would even push his foot against our hands. We started noticing that he was having some problems with his breathing. It appeared that the left side of his chest would rise when he was breathing, but the right side would not rise. Marc's Aunt Mary was here when we noticed this and she advised us to ask for a pulmonary consult, which we did.
On Monday chest x-rays were taken and it was revieled that Hunter did have some secretions in his lungs, which was mostly due to the fact that he did not have a lot of strength to cough. Breathing treatments were started and they would also use a catheter through his nose into his lungs to try to clear the secretions out of the airway. Today was also the first day we heard Hunter say a word clearly. "Water". We were all so excited. He was building up his strength. Later in the day we met with the oncologist that would be treating Hunter. We were given the devastating news that the tumor was a medulloblastoma. This is a rare tumor and is extremely aggressive. In two weeks, Hunter will have a lumbar puncture to make sure the tumor has not moved into his spine. The week after July 4th, he will have another MRI. Depending on the results from the lumbar puncture and MRI will determine where we will begin our treatment. If the tumor has not spread we are hoping to be approved for a newer type of radiation called Proton Radiation. This is not something that is done in the state of Georgia so we will be looking at going to CHOPS or Jacksonville. We have applied to the insurance company for approval since the cost of this type of therapy is 5 times the amount of typical radiation. Hunter will have to receive radiation 5 days a week for 6 weeks (which must begin by July 12th), even before we begin chemo. To say our hearts dropped is an understatement. We will know on Friday the 20th, when we meet with the oncology team again, the type and length of chemo that he will need.
Tuesday was a great day. Hunter began talking a lot more than he had been. He started making simple sentences and was in good spirits. The speech therapist came in and told us that he appeared to be able to swallow so we could feed him soft foods, of course they would have to be like baby food consistency. Hunter was so excited because it had been over a week since he had his last meal. He had a few bites of each and was very happy. He wasn't eating a lot but we were happy that he was at least able to swallow and hold the food down! He was receiving breathing treatments every 4 hours to try to clear out his lungs.
On Wednesday the ICU doctor and I talked about inserting a feeding tube to help make sure he is getting all the nutrition he needs (as soon as he leaves ICU, he will be moved to the rehabilitation floor before we begin radiation). He did not eat much Wednesday but he was excited to have a grilled cheese sandwich, which is one of his favorite foods to eat. He continued to use his words more and was changing the channels on the remote control. He was even able to get into the rocking chair, with the help of the OT and PT, and sit there for 30 minutes. They cut back his breathing treatments to every 6 hours which was also wonderful news. While he was sleeping that night, he pulled out the feeding tube that was put in earlier in the day. They pulled the remaining part of the tube out and decided that we would talk to the doctor in the morning about which steps needed to be taken next.
Today was a difficult day. Hunter woke up and was seen by the doctors who decided to raise the pressure in his drain, which is something that they have been doing since he came out of surgery. When his PT and OT came in to get him in the chair for a longer period of time, he was unable to hold up his head and be assisted into the chair. The nurse called the the doctor who said that they needed to reduce the level and get a Cat-Scan to check Hunter's brain. The results from the Cat-Scan showed that there was fluid building back up in his brain again, so they reduced the pressure back to 5, which is where he started from.
Hunter has been sleeping most of the day today. He is only receiving breathing treatments on an as needed basis. He will have another chest x-ray tomorrow to see if his lungs have cleared up. Now we are in the waiting stage. We are hoping that Hunter will be able to increase the pressure increases so the drain can be removed, If that is not a possibility, he will have a shunt put in. He will also have to have a feeding tube put in through his stomach possibly sometime in the near future. Please keep Hunter in your thoughts and prayers. Anyone who knows Hunter knows what a bright and special child he is.