Wednesday, February 25, 2009

A New Treatment Plan

Right after my last post on Monday, February 16 Bradley was moved from the step down ICU back to a regular room. He also received a roommate. Thankfully his roommate was also an adult, and aside from having no privacy (for Bradley or his roommate), it really wasn’t that bad. On Tuesday, February 17 Bradley was switched over from IV pain medicine to oral pain medicine. He was experiencing quite a bit of pain from this. We found out that he was on the lowest dose of pain medicine, so they increased it slightly. This seemed to make Bradley much more comfortable. Also on Tuesday, half of Bradley’s staples were removed. Bradley’s parents left to return home on Wednesday.

Thursday, February 19 was a very busy day for Bradley. The rest of his staples were removed. I counted over 70 staples total removed, but lost count after that. We also met with a new oncologist, Dr.Chou. We all discussed what Bradley needed to do next in terms of treatment. It was decided that Bradley will do 6 rounds of a new chemotherapy. This chemo is comprised of 3 drugs, Irinotecan, Temodar, and Avastin. These are not considered “high dose” chemotherapies, and therefore are not supposed to have as many side effects. Though, it may affect Bradley slightly differently as he has already had so much chemo. It was explained to us that the purpose of this chemotherapy is to target any remaining cancer cells, where as the previous chemotherapies were targeting tumors. This combination of drugs has been studied and appears to work very well in DSRCT. In the future the doctors are considering making it part of the treatment protocol right from the start in conjunction with the other chemotherapy agents. The Avastin is a new drug that again shows promise in Bradley’s cancer. It seems to be so new that we are not sure that any other DSRCT patients have used it. After the 6 rounds of chemotherapy Bradley will possibly be having a stem cell transplant. However, they usually harvest stem cells from siblings. Bradley only has “half” siblings and as of now he is not a candidate for this treatment. It is being thought that in the next several months the National Cancer Institute will be expanding the stem cell transplant protocol for DSRCT patients to include non-sibling donors. This is certainly a hope of ours. There is also some discussion about needing radiation. In the past patients received total abdominal radiation which is quite hard on the body and toxic to not only the “bad” cells but also the “good, healthy” cells. Memorial Sloan Kettering Cancer Center is however in the process of getting FDA approval for a new treatment that would take the place of total abdominal radiation. It is our hope that this will be available by the time Bradley finishes these 6 chemo cycles.

Also on Thursday, Bradley was released from the hospital. He walked all six blocks back to the Ronald McDonald House in the freezing cold. We spent Friday, Saturday, and Sunday in our room. Bradley was able to get some much needed rest, and unfortunately was still quite uncomfortable. Bradley was supposed to begin weaning himself from the pain medicine starting Friday, February 20, only a week after his major surgery. As his pain was quite intense over the weekend I continued to give Bradley his pain medicine around the clock. We both felt he was released too soon from the hospital.

Monday, February 23 Bradley met with Dr. Merola another oncologist on the pediatric sarcoma team. She noticed that he was in pain and instructed him to continue to take the pain medicine as often as he needed it. She said he was still on a very low dose of immediate release pain medicine, and she seemed quite surprised that Bradley was not on a long lasting pain medicine as well. Bradley was given the ok to begin his 1st round of the new chemotherapy. It is administered over an hour infusion daily for 10 days. He will go Monday-Friday, have the weekend off as the clinic is closed, and then Monday-Friday again. Bradley will not start the Avastin until the 2nd round of chemo, as it is a wound inhibitor. So, we will finally be able to leave for home on Saturday, March 7, after over a month of being in NY. Bradley will be able to receive the chemotherapy in Atlanta from Dr. D’Amato, and just like with Houston, we will have to return to NY for scans every 8 weeks.

Tuesday, February 24 Bradley met with the surgeon, Dr. LaQuaglia for his follow up visit. He was told everything looked very good, but he needed to start weaning from the pain medicine. Since Bradley was receiving different orders as far as taking the pain medicine, he and I just decided if he needed it he would take it and if not he would begin the weaning process. Dr. LaQuaglia also explained that there are 4 oncologists and 6 nurse practitioners, in addition to him and his staff that will all be in charge of Bradley’s treatment. We were very pleased in hearing that Dr.LaQuaglia will remain active in Bradley’s treatment, as well as to hear that the entire "team" are all aware of Bradley, and his treatment is frequently reviewed. No one person can make a decision in terms of Bradley’s treatment, the entire “team” reviews options and decides together on a treatment plan. Thus, we will not be returning to Houston for further treatment. Memorial Sloan Kettering will become Bradley's main treatment facility.

Today is Wednesday, February 25 and Bradley’s 3rd day of chemotherapy. Thus far he has done very well on it. He has however begun to experience some typical nausea. Bradley continues to walk the six blocks to treatment and the six blocks back to the Ronald McDonald House after treatment. The Ronald McDonald House is very nice. It has 84 patient rooms and is filled with all sorts of amenities. There are free tickets to shows and musicals, all sorts of in-house entertainment and activities, and several times a week a great meal is provided. We are fortunate to be able to stay here for Bradley’s treatment, and we will also be able to stay here in the future for our “scan” visits.

Hopefully the next week and a half will go very quickly, especially for Bradley. Even in the midst of his pain I have yet to hear Bradley complain. He is a true inspiration and example of one who remains ever strong in spiritual, emotional, and physical strength, and I am continually learning from him. As always thank you everyone for all of the prayers, cards, and well wishes.

Tuesday, February 17, 2009

Moved to ICU

We left off on Friday afternoon, February 13. Bradley was doing very well. He was able to get up and walk two laps around the hospital. All of the nurses were shocked and surprised at how well he was doing so quickly. Bradley does like to impress the ladies! His pain was controlled, and he was also diligently using the breathing thing they give you to prevent pneumonia. That night a “candy cart” came around for all of the children and their families. It had full size candy in every assortment you could imagine. Our nurse told us to stock up for the week and we gladly obeyed. Just another perk to being on the pediatric floor.

Saturday, February 14, seemed as though it was going to be another great day for Bradley. The tube in his nose used to suck out his stomach acid was removed. It was done very quickly and was very uncomfortable for Bradley and caused a nosebleed. Later in the day his chest tube was removed. Thankfully the removal of this did not hurt, as it was painful having it in and it was also leaking. Unfortunately after this things started to go downhill fast.

Bradley had not needed blood during his operation or on Friday. However, on Saturday his hemoglobin had dropped to 7.6. At Memorial Sloan Kettering they transfuse at 8 or less. So Bradley was given 2 units of blood. Near the end of the second unit Bradley had a mild fever. I did not think much of this as this has happened in the past. The resident assured us it was normal to run a mild fever for up to 4 days post op. Bradley was also producing an “ok” amount of urine, but the resident wanted to jump start the body’s natural process by giving him more fluid to help push it out. I think this was the start of our troubles. Bradley’s oxygen level fell to around 70. The normal amount is supposed to be 95 or higher. It was just by chance that they did his vitals at that moment as Bradley was not feeling short of breath. This seemed to alarm everyone as suddenly a rush of 3 residents and 2 nurses came in trying to fit him with an oxygen mask. This was one of the downsides to being on a pediatric floor. They had to raise his oxygen level using the highest amount of oxygen they are comfortable giving. Also at this time Bradley began experiencing intense pain in his incision. He felt as if his stomach was swelling with fluid causing his incision to stretch apart. We also learned the blood he had been given did not raise his hemoglobin as it should have.

So within a matter of hours Bradley developed a fever, low oxygen levels, intense pain and still low hemoglobin levels. I was worried of course and the fact that the residents seemed worried made me worry more. They drew blood to culture for infection as well as to send off to see if Bradley experienced a reaction to the blood transfusion. They said it would typically have happened early on, but since he had so much chemo his body may have had a delayed reaction. Another theory was he may have had too much fluid causing there to be fluid in his lungs. The scary part was these were all theories and none of them seemed to really know. He was sent for multiple chest x-rays, no easy task switching beds when you are in an extreme amount of pain. The x-rays came back looking pretty normal. Lasix was ordered (a diuretic) to help flush fluid. Bradley was hoping this would help with his pain and abdominal swelling. We went to bed with Bradley on high oxygen and no real answers or relief to pain.

Sunday, February 15, did not start out any better. Bradley had a long night due to his pain. His oxygen level had not improved, nor his pain, but his fever was gone. More chest x-rays were ordered as well as an abdominal x-ray. According to the resident it showed a small amount of fluid in Bradley’s lungs. She seemed quite concerned and said she would feel more comfortable transferring Bradley to the step down ICU unit. I thought this was one of the better decisions they had made so Bradley would receive more individualized care.

When Bradley entered the step down ICU unit the nurses and a nurse practitioner immediately came in to evaluate him. The nurse practitioner immediately addressed his pain. Bradley and I had asked his nurse in the old room several times to check his epidural. Bradley thought that being transferred from bed to bed for his x-rays knocked the epidural catheter out. I also asked the nurse when he was getting an x-ray about a puddle on the bed. Bradley and I put 2 and 2 together and realized his epidural was out and this was causing his pain. In ICU the nurse practitioner confirmed our suspicions and removed the epidural. It was a great idea to help with pain, too bad it did not serve its purpose. I was however relieved that this was what was causing his extreme pain. I felt horrible that Bradley had been receiving next to nothing in terms of pain medicine. The NP immediately adjusted his pain medicine and also said that his dose was not effective for his weight. Within 20 minutes Bradley was getting relief from his pain. She also reviewed his chest x-ray and said there was definitely fluid on his lungs as well as a partially collapsed lung. Thus, causing Bradley’s decreased oxygen level. They started him on lasix and by the end of the day he had lost 2 liters of fluid. His pain was controlled and the oxygen they were giving him was reduced, and he was doing fine maintaining the normal oxygen level. They also had him up walking, sitting up, and using his breathing thing. They said this would help greatly in getting rid of all the excess fluid. The resident had told him not to sit up or walk because it would further hinder his breathing and oxygen level. Bradley had not walked for a full day and this set him back some.

By the end of yesterday, Sunday, Bradley was walking and on clear fluids and looking overall 100% better. I felt much better about everything since we knew why everything was happening and they were working to correct the problems. I was not very happy that 3 residents each told us different theories, and that they did not bother to up his pain medicine or check his epidural until we went to ICU. I was just thankful though that while in ICU the nurse practitioner addressed all of his problems and corrected them shortly thereafter.

That leads us to today, Monday, February 16. Bradley has been walking, sitting up, and beginning to eat soups and such. His pain has subsided some and he is not using his “pain button” nearly as much. He is maintaining 95 for his oxygen level on his own. He is continuing to receive lasix and that in combination with moving around will help to flush out any remaining fluid in his lungs, etc. He received 2 units of blood taking his hemoglobin from 7.7 to over 10, and he did not experience a fever this time. His other drain was removed as well as the bandages over his incision. He will stay in ICU until his room there is needed. I am glad to have him there as long as possible. His care there is wonderful.

He is getting stronger and getting himself out of bed, each time he says it becomes easier. We are hoping tomorrow is an even better day yet and that there are no more setbacks to Bradley’s recovery.

Friday, February 13, 2009

Surgery Update

Bradley and I arrived at Memorial Sloan Kettering Cancer Center at 6:30 yesterday morning (February 12) in preparation of his surgery. He had lab work done and received fluids until about 10 am. We then went down to the pre-op area where Bradley received an epidural catheter. This was inserted to control Bradley’s abdominal pain better than just IV pain medicines. The epidural catheter will remain in for 3-5 days and will come out when Bradley is able to eat and drink and take oral pain medicine. Bradley’s mom, dad, his sister Lori and her husband Steve, and myself all were allowed to stay with him until he was wheeled back to the operating room. Bradley was not the least bit nervous. He was very talkative and was laughing and joking around with everyone right up until the surgery. The nurses even commented that he was very social with them while being anesthetized. Bradley went to the operating room at about 11:20 am.

The surgery began at 12:30 and lasted until right about 7pm. Bradley’s incision starts at his breast bone and extends to his pelvic bone. He did very well throughout the entire surgery and did not lose a lot of blood. Dr. LaQuaglia met with me after surgery and told me that everything looked good and that he was able to remove all “visible tumors”. I was so excited to hear this news, and I was also very happy to learn that several places we initially thought contained tumors did not. We are definite believers in the power of prayer.

We were able to see Bradley at about 8:30pm in the recovery/ICU unit. He spent the night there because of the late hour and also because he remained intubated. The uncomfortable tube was kept down his throat because of the length of the incision and the duration of the surgery. Prior to surgery Bradley and I had worked out all sorts of hand codes to use to communicate since he would not be able to talk. Much to my surprise Bradley did a better job at remembering them than I did. He wanted to know all about the procedure and outcome. He was quite alert and was able to nod and answer questions. The nurse said the tube would be removed from his throat when he became even more alert.

Bradley’s dad and I spent the night in a hospital waiting room. At midnight I received a call from his nurse and I immediately became concerned. Thankfully, she told me they had removed the tube from Bradley’s throat, that he was talking, and that he wanted to talk to me. Bradley got on the phone and said his nurse would let me go and visit him for ten minutes. I was thrilled that Bradley was doing so well and that I was able to sneak a visit in to see him.

This morning at 10 am Bradley was moved from ICU to his own room. He is on the pediatric floor as everything about his care is pediatric as this is a pediatric cancer. At MD Anderson he was not treated by pediatric specialists. Of the two I much prefer the pediatric side of it. Before Bradley's surgery Bradley's dad told Dr. LaQuaglia to "take good care of his son." To this Dr. LaQuaglia replied, "In the operating room he is my son." I was extremely impressed by Dr. LaQuaglia. He could not be any nicer. All of the staff here are very kind and caring. They have all sorts of juices, snacks, and extra little perks that also help.

We have been told Bradley is doing great. The nurse practitioner asked him if he had a high pain tolerance and he said, "No, I just don't complain." Boy is that the truth. He is already using his breathing machine and in an hour it is time for him to get up and walk. I dread this so much for him, but he is strong in many ways. He is a real trooper.

Bradley is well on the road to recovery. He is doing great, the surgery was a huge success, what more could we ask for? We certainly give thanks to the Lord for hearing and answering our prayers and for His guidance every step of the way on the journey to recovery. We so appreciate everyone’s prayers and support, and we thank you all. I am sure Bradley will come back later and post various specifics about our New York adventure and his recovery, as for now I hope my post gets Bradley’s approval.