Tuesday, November 29, 2011

Tuesday, November 29, 2011

I woke up this morning to find a gift from our nurse. It was a copy of Collin's labwork, and it showed his ANC is 1,215 today!! This means his immune system is coming back up. He has had no more fevers, his repeat blood cultures are negative, and his energy has improved. He has a little more interest in eating, but since the chemo kills off taste buds, nothing has much taste. The things that he will eat the most of are sausage patties, doritos, etc. because their flavors are more bold.

We just saw the doctor, and as long as Collin's ANC is at least 1,500 tomorrow, we will be able to go home! He will still need IV antibiotics for a week or two, but the nurses will teach me how to give them at home through his mediport. When Collin still had his broviac line I had to give him IV antibiotics at home more than once, so this won't be too different. It will be so nice to get home! Hopefully we can get the Christmas tree up next weekend!

Sunday, November 27, 2011

Sunday Update

We just saw the doctor, and learned that the bacteria causing Collin's infection is indeed e coli. E coli is normally present in the lower intestine, but the chemo kills the functional barrier that normally prevents the bacteria from getting into the bloodstream where it doesn't belong. Luckily we caught the infection early, and the bacteria usually responds well to antibiotics. Collin will be able to go home once his counts come up, the cultures come back negative, and if the antibiotic that works is one that can be given intravenously at home.

Earlier today Collin and Neya were playing and getting kind of rowdy, and Collin was getting a bit sweaty. The tegaderm dressing that was keeping his IV access to his mediport in place came off, and the needle came out of the port. So we had to numb the area for a bit, and then stick his port for the fourth time this week. As Neya watched the procedure, she said, "I would be screaming if it was me!" Collin cried a little, but she couldn't believe how calm he was. I have to admit, if it were me, I'm not so sure I wouldn't be screaming as well. Once again I'm in awe of Collin's bravery!!

Sunday, November 27, 2011

Collin was discharged from the hospital last Sunday, November 20 after a short stay for chemo. Thankfully it was a quick, uneventful stay, and he tolerated the chemo very well. Most of our week was spent at home, as he only had one therapy appointment on Wednesday. We had a great Thanksgiving at home on Thursday with Bill's family and some close friends.

On Friday we had a 9:00 clinic appointment for a doctor visit and bloodwork. The bloodwork showed that Collin's ANC was 0, which means he is neutropenic and has no immune system. It also showed his hemoglobin and hematocrit had dropped, so the doctor ordered a blood transfusion. Everything went smoothly, but we spent over seven hours in the clinic, so it was a long day.

A little after 6:00 that evening, Collin felt warm to me, so I took his temperature. It was 100.3. In an oncology patient, a fever is the first sign of an infection which can be very dangerous for someone with no immune sysytem, so we can't give Tylenol and hope it goes away. We have to watch it carefully and call the doctor if it is 100.5 for four hours, or if it reaches 101.  We checked his temperature about every hour, and watched it creep up to 100.4, then 100.5, and finally 101.3. I called the hospital, spoke to the doctor, and was told to bring him directly to the pediatric oncology unit at the hospital. He was admitted, blood cultures were drawn to see if there was an infection brewing, and he was started on a broad spectrum antibiotic.

Yesterday afternoon we found out that the cultures had started to grow, which means Collin does indeed have an infection. The bacteria that is growing is called gram negative bacteria, which can be very serious. Some examples of gram negative bacteria are e-coli, salmonella, shigella, pseudomonas, and legionella. We won't know what specific bacteria he has until the cultures grow more. Usually someone with gram negative bacteria is pretty sick, so it's amazing that Collin is feeling as well as he is (he was much sicker when he had a gram negative infection last year). He doesn't have much of an appetite and his energy level is lower, but his fever is gone, and he's not throwing up. Along with the broad spectrum antibiotic, he is now on a more specific antibiotic that treats gram negative infections, and once we know for sure what the exact bacteria is, he could be given yet another antibiotic. He'll have to be on antibiotics for ten to fourteen days, which means we'll be in the hospital for a bit longer than we hoped. Once his bloodcounts start coming up, and the blood cultures are finally negative, hopefully he can finish the antibiotics at home. 

As always, thank you so very much for your prayers and well wishes-they mean a lot to us!

Saturday, November 19, 2011

Saturday, November 19, 2011

This past week has been a busy one. On Monday we had to be at the hospital bright and early for Collin's mediport to be replaced. These procedures are getting harder as he is getting older, because he's more aware of where he is and what is being done to him, and he is able to voice his displeasure. Once we got to the same day surgical unit and I got him changed into the hospital gown, he screamed and cried "I want to go home Mom, I want to go home!" It was so hard not to just scoop him up and run out of there. I held him and tried to soothe him, and eventually he calmed down. When they were ready for him in the OR, I walked him there and kept my arms around him as the anesthesiologist tried putting the mask over his face. He always fights the mask, crying and trying to push it away. For the MRI on October 26, when the anesthesiologist saw him fight the mask, she took the mask off, and just held the hose under Collin's nose, which worked well. So in the OR I asked them to take the mask off, and I held the hose under his nose. He stopped crying, and in a few short minutes, he was drowsy enough that I could lay him down, and then we put the mask back on. Once he was asleep, I kissed him and went to wait. After about an hour and a half the surgery was done and they called me down to the PACU where Collin was already waking up. We moved to recovery, and eventually were released. This time the mediport is in the middle of his chest, right above where the broviac was. So now he'll have two more scars on his chest. When we finally got home later that afternoon, I was exhausted. Spending the day at the hospital like that, being under some amount of stress (even if I didn't realize it in the moment), and trying to keep an active toddler happy and entertained is very draining!

Tuesday morning Collin had speech and occupational therapy. His OT knows that he loves Mr. Potato Head, and she gave him a Christmas Mr. Potato Head. Collin didn't let that Mr. Potato Head out of arms reach all week!  The first day, he carried it around saying, "I made this" over and over. He has insisted on taking it everywhere with him, and would get very angry every time the feet fell off, so on Thursday night I glued all the parts on so they won't get lost.

Wednesday we took Collin to the barber shop and had his head shaved. Of course I cried, but Collin just sat so bravely and didn't make a peep. His head is nice and round, and he still looks really cute bald. 

Thursday I spent the day running in all different directions. I cleaned the house, got caught up on laundry, went to school to have lunch with Neya and observe her class, and packed for our weekend at the hospital. Thursday night was Collin's last dose of oral chemo in this round. Thankfully he tolerated the ten days of chemo very well, and didn't throw up once.

Friday morning I got Neya on the school bus and then Collin and I headed to the hospital. His first appointment was another hearing test. This time the audiologist was able to get better participation from Collin since he has made so much progress in speech therapy over the last few months. He could follow directions, point to pictures appropriately, drop pegs in a bucket on cue, etc. However, the results indicate some significant high frequency hearing loss in his right ear. He had no response to the high frequency sounds that were played in his headphones, sounds that I could hear sitting next to him. He also seems now to have some high frequency loss in his left ear, although it is to a lesser degree than his right ear. At this point the hearing loss in his left ear is not enough to affect his learning speech, but the audiologist wants to keep close tabs on Collin and will see him again in December. The audiologist said she would delay fitting him for hearing aids since he's dealing with so much right now, but I'm guessing that sometime in the next six months he will get them.

After his hearing test we continued on to the clinic, where Collin was examined by Dr. Comito. We talked a little more about the treatment plan; Collin's next MRI will be on December 9, and after that we will meet with Dr. Comito, a neurosurgeon, and a radiation therapist who will discuss the Gamma Knife procedure and start talking to us about radiation. Dr. Comito has only had one other patient relapse after being treated using the Head Start protocol that Collin was treated under. I find that very worrisome, because to me that says that Collin's cancer is very aggressive. She has told me however that that one relapse is still doing well two years after the fact. I know she doesn't want me to lose hope, but the fear is unbearable some days. 

After talking with Dr. Comito, Collin's new mediport was accessed by one of the nurses, and then we had a leisurely lunch while we waited for the room to be ready. Bill spent the morning steam cleaning our carpets at home so everything is clean for Collin, and then came to the hospital and helped get our stuff up to the room. Collin was started on IV fluids for a few hours to hydrate him well. Then he was given anti-nausea meds, and then the Cytoxan chemo ran from 7-8 pm. The rescue agent, Mesna, ran for the next 12 hours, and he was given lasix as well to help his body clear the chemo, which meant a busy night of changing diapers (and pjs and bed linens when the diaper leaks).

The IV hydration continued for the 12 hours following the Mesna. We got Collin out of the room for a while this afternoon; he was able to walk to the playroom, which was exciting because he could never do that before. I can't figure out what he remembers from his hospital stays last year.  He keeps looking down his shirt at the IV lines hooked up to his mediport, and of course doesn't understand when I have to keep him from doing certain things like getting out of bed on the side opposite the IV pole because I don't want him to yank the lines out of his chest. We have managed to keep him fairly entertained with the help of Godparents and Grandparents. He has seemed to tolerate the chemo very well so far, has eaten here and there, and hasn't been vomiting at all. Tonight the chemo was run again on the same schedule as last night, and we should hopefully be able to go home tomorrow afternoon. Both last night and tonight Collin tearfully told me he wanted to go home, and it breaks my heart. Thankfully this stay is short, but there is a likely chance we may be back by the end of the week for a fever. We will have to give the GCSF shots again at home to boost his white blood cell count, and he will most likely need a platelet transfusion at the clinic around the middle of the week.

Sunday, November 13, 2011

Sunday, November 13, 2011

On November 13, 2010, one year ago today, Collin was discharged from the hospital. As we headed out of our room and made our way down the hall, the nurses threw confetti all over Collin and applauded for him. He had made it through brain surgery, five rounds of chemo, a round of high dose chemo, a stem cell rescue, and veno-occlusive disease. He had survived horrible things I never could have imagined before being thrust into the world of childhood cancer. I felt on top of the world that day we took him home-it was one of the happiest days of my life! Now, a year later, just as I started to let go of some of the nagging fear that is a constant companion in my life, we are having to start the fight all over again. It's so unfair. As I put on the gloves and gave Collin his first dose of chemo Tuesday night, I felt sick to my stomach. But Collin just opened his mouth and took it, with no fussing, no complaining. If he can keep fighting, so can I. 

Tomorrow morning we have to be at the hospital at 6:45 am so Collin can receive a new mediport to replace the one that was taken out on October 14. On Tuesday he has speech and occupational therapies. On Wednesday or Thursday we will take him to the barber and have his head shaved to spare him the itchiness of his hair falling out from the chemo. I don't know how he will handle that; he likes to feel the wind blow his hair, and he likes me to blow the hairdryer on his hair when I'm using it on mine. I'm dreading it; I know it will grow back, but I still like to feel his soft hair every day even though it's been back for almost a year. And then on Friday morning we will head to the hospital where he will have another hearing test, be seen in the clinic, and then be admitted back to 7 West for 3-4 days to get the chemo Cytoxan. A few days after that, his immune system will crash, I won't be able to take him anywhere except his medical and therapy appointments, and he'll probably be admitted back to the hospital for another short stay with a neutropenic fever. Normal life is again on hold while we fight this beast with all we have. 

The last two weekends have been so much fun! We visited our THON organization on Penn State's Altoona campus last weekend. We had a blast and were spoiled by many wonderful people, but best of all was seeing Neya and Collin have fun just being kids. This past Friday we held a fundraiser in Collin's honor to benefit the Four Diamonds Fund, and we raised $3700! And today we were on Penn State's Main Campus for the THON Family Carnival. I will go into more detail about these great experiences and share pictures in the near future. Right now I am exhausted, and since we have to be at the hospital very early in the morning, I'd better get to bed!

Tuesday, November 8, 2011

Tuesday, November 8, 2011

Yesterday we met with the neurosurgeon who resected Collin's original tumor to discuss the options for removing the current tumor. Based on the location of this tumor, he would not recommend trying to remove it surgically because it is just too risky; there is too much brain matter to go through to get to the tumor. Risks include bleeding, hydrocephalus, and permanent vision deficits. However, it is a good candidate for Gamma Knife Radiation, which is a procedure where radiation is used only on the tumor tissue to basically melt it away. The tumor has to be small for Gamma Knife, which this one is. With a Gamma Knife procedure, small lines of low dose radiation would be passed through the tumor at many different angles. The point where these lines intersect (the tumor) would receive a high dose of radiation, but everything else around the tumor receives a very low dose of radiation. There is little to no risk of bleeding, etc.

Last evening, Dr. Comito called to discuss some feedback she had received from Dr. Kieran at Dana Farber Cancer Institute in Boston. After considering all of the input and feedback from some of the top pediatric oncologists and neurosurgeons in the country, we have come up with what feels like a logical plan of treatment. 

First, Dr. Comito feels that even though there is only one nodule right now, there is most likely still residual disease that can't be seen yet and so therefore cannot be gamma knifed. In order to attack that and keep it in check, we will start with a round of chemo. Another MRI will be performed in a few weeks to gage the effectiveness of the chemo. If the nodule is smaller or no longer there, that means the cancer is still sensitive to chemo, and we can do a second round to attack it further before doing a Gamma Knife procedure to the tumor bed. If the MRI were to show that the tumor is the same or larger, chemo would be abandoned and we would Gamma Knife the tumor and the immediate area to kill any remaining tumor cells.

The next step would be metronomic, or maintenance, therapy which would combine some chemo along with some anti-angiogenic drugs. Tumors recruit their own private blood supply to obtain oxygen and nourishment for cancer cells. Antiangiogenic drugs cut off this blood supply, which in turn starves the tumors and prevents their growth and spread. This type of therapy can be used for quite some time. The hope is that using this kind of therapy can buy us more time before doing craniospinal radiation. At some point we can do the 3F8 antibody treatment at MSKCC as well; at this moment I cannot remember where in the plan this would take place.

So, tonight Collin will start back on chemo at home. He will receive Temozolomide for five days, and Etoposide for ten days. On Monday November 14, he will have surgery to place another mediport. Then on Friday November 18, he will have a hearing test in the morning, and later that day he will be admitted to the hospital for 3-4 days to receive Cytoxan. He will lose his hair, so we will probably shave his head beforehand so he doesn't have to be all itchy as his hair falls out. His immune system will be knocked out again, so we need to be extrememely careful of germs. He will probably be hospitalized again for a neutropenic fever after finishing the round of chemo. We don't relish being in the fray again, but we do feel better now that there is a plan. We have complete confidence in Dr. Comito; I know she has agonized over these decisions as much as we have. She has consulted with very respected colleagues, and she wants the best possible outcome for Collin.

Saturday, November 5, 2011

Friday, November 4, 2011

We met with Dr. Comito this afternoon to further discuss yesterday's meeting with Dr. Dunkel as well as some other options she wanted to offer us after speaking with some other pediatric oncologists around the country.

As I mentioned in my last update, in order for the various treatment options to have the best chance of success, the first step is to get rid of as much tumor as possible. One way to accomplish this is another resection surgery. There are risks with another brain surgery, and we will be meeting with Collin's neurosurgeon Monday to discuss these risks. Dr. Comito offered us another option to consider, and that is doing another round or two of chemo first. After the first two rounds of chemo last year, most or all of Collin's measurable disease was gone. And as rough as chemo was, Collin's body still handled it fairly well. By doing a round or two of chemo first, there is the chance that it could shrink or kill the current tumor, and then another brain surgery could be avoided. There are risks with chemo as well, and Collin would lose his hair again and probably end up hospitalized with a neutropenic fever at some point, but when we compare how Collin fared with chemo versus how he fared with brain surgery, chemo seems less risky than brain surgery. It is the brain surgery that left him with right sided weakness, the problems with his eyes, the facial paralysis, and the difficulty communicating. Trying chemo first could hopefully eliminate the need for another brain surgery, and also buy us a little more time to put into place the plans and arrangements for radiation.

Radiation is based on the idea of selective cell destruction, and uses energy to destroy cells. There are two different kinds of external beam radiation that can be used on Collin. Traditional radiation uses high-energy radiation, usually from X-rays, to kill cancer cells and shrink tumors. The problem with X-rays is that they're not easy to control. As X-ray enters the body, it gives off  a tremendous amount of energy at the point of entry. As long as the tumor is somewhere in the path of the X-ray, it receives some of that radiation. But so does the healthy tissue around it. The X-ray has an entry point and an exit point through the body. Proton beam radiation can cause less collateral damage to surrounding healthy tissue. The proton beams are easier to control than X-rays, and can be set to release their energy at a specific point in the body. The proton beam has an entry point, but since the radiation can be set to stop at the tumor, there is no exit point like there is with X-ray. Radiation would be given daily, under anesthesia, over a number of weeks. Traditional radiation could be done at Hershey Medical Center; proton beam radiation would have to be done at one of the few proton beam centers in the country. 

Some of the side effects of radiation to the brain and spine include skin changes, fatigue, nausea, vomiting, hair loss, eating and digestion problems, hormonal imbalances, hearing loss, organ damage, stunted growth of the spine, stroke, IQ and memory deficits, and secondary cancers. Some of the side effects are temporary, and others are permanent or may occur years after radiation treatment. Higher doses of radiation most likely have more severe side effects. Some of the decisions we still have to make are the dose of radiation to give, and in the case of proton beam radiation, where in the country to get it.

We are looking forward to a fun weekend visiting with and getting to know more of our extended Altoona THON family. We certainly need some fun! Monday will be another busy day with therapy, picking up the orthotics for Collin's feet, and meeting with the neurosurgeon. 

Friday, November 4, 2011

Thursday, November 3, 2011

We spent about an hour and a half with Dr. Ira Dunkel at MSKCC today. He agrees with Collin's oncologist, Dr. Melanie Comito, that Collin is still curable. He also agrees however that the best chance to cure disease that has proven to be resistant to chemo is to use non-chemo methods, namely radiation. The best chance of curing the disease using radiation would be to give the highest dose of radiation known to be curative. However, chances are high that this would not leave Collin with a good quality of life. So the dilemma is...which is more important-the highest chance of a cure despite the risk that Collin may be left unable to ever live independently? Or giving radiation at a reduced dose to improve his chances of still being left with a decent quality of life, but at the risk that the reduced dose of radiation alone may not cure him? If we choose the later, how can we "hedge our bets" to improve the chance of a cure as well as preserving quality of life? 

Long before the FDA will approve drugs for widespread use, they go through years of testing and clinical trials by researchers and hospitals. Phase I clinical trials solely test the toxicity of a drug. During Phase II trials, while the toxicity is still monitored, the goal is to see benefit from the drug being tested. MSKCC is now conducting a Phase II clinical trial using an antibody that is known to react with the kind of disease Collin has. This clinical trial has been going on for about five years. However, the antibody has been used for twenty-some years in patients with Neuroblastoma, another childhood cancer of the central nervous system, and it is known to be effective. 

Antibodies are proteins generally found in the blood that detect and destroy invaders, like bacteria and viruses. There is an antibody named 3F8 that attaches to tumor cells. When radioctive iodine (131I) is attached to the antibody, it is called 131I-3F8. When 131I-3F8 attaches to a tumor, it delivers radiation right to the tumor. To be able to do this, a permanent small plastic tube (called an Ommaya reservoir) would be placed in one of the ventricles of the brain, and through that the antibody would be injected directly into the cerebral spinal fluid (CSF). It would flow through the brain and spine via the CSF, attach to any tumor cells it finds, and deliver the radiation that will hopefully kill the tumor cells once and for all. Before the antibody injections are given, several other medications are given to protect the thyroid gland from radiation, and prevent allergic reaction, fever, and other side effects. The most likely side effects related to the antibody are headache, nausea, vomitting, and fever. Rare but serious side effects include injury to the spinal cord, brain, or muscles; walking problems; pain; tremors; seizures; coma; or death. The antibody injections will be given once a week over a maximum of five weeks. Certain tests will need to be done before, during, and after the study. 

The antibody will only attach to tumor cells, not healthy cells, so the radiation that is attached to the antibody will only be released into tumor cells. However, it doesn't penetrate more than about a millimeter. Therefore, in order to give this method the highest chance of success, there are some things that would need to be done first. The new tumor that is present would have to be removed (resected) if possible. After recovery from that surgery, external craniospinal radiation would be administered to shrink any other tumors that may not be visible yet. Then after a four week recovery period following the completion of craniospinal radiation, the antibody therapy would be administered. It's also possible that at some point during or after all of this, Collin could go on more maintenance chemo using some drugs he hasn't had yet. This option is interesting because since the new tumor didn't become visible until after Collin's maintenance chemo was finished in August, it could be argued that some of the maintenance chemo was working to keep the tumor cells from growing. This is a concept I will go into at a later date. 

Dr.Comito is very  informed on the latest treatment options out there. She has been in contact with and referred us to some of the best pediatric oncologists in the country. These oncologists and Dr. Comito are in agreement over the best way to treat Collin next. These decisions are some of the most difficult decisions a parent could ever be forced to make, but we don't have a choice. The alternative, losing Collin to cancer, is not acceptable to us, and we are not ready to give up. So after weighing the options that have been presented to us by the best doctors, we have to make a decision, accept it, and not look back. We are meeting with Dr. Comito this afternoon to further discuss the options for resecting the tumor, the kind of external radiation to be used, the risks, the dose, and where we would have to go to get the radiation. Once the details are worked out, plans will be put into motion. After that we must push ahead, and hope for the best possible outcomes while keeping in mind how tough Collin is and how far he has already come. Your love, support, and prayers are appreciated more than you will know during the next steps of this journey.

Wednesday, November 2, 2011

Wednesday, November 2, 2011

There has been so much going on, and things are happening so quickly my head is spinning. I have to keep looking at my watch to see what day it is, and I can barely keep a thought in my head. I don't have much of an appetite, and when I do eat it feels like the food is sitting in my stomach like lead. I hate this constant feeling of fear, dread, and uncertainty.

Monday morning Collin had two therapy appointments. Then around lunchtime I got the call from MSKCC that we had been approved for a consult, and they gave us an appointment on Thursday morning. Next I had to make a bunch of phone calls to reschedule our appointments for the rest of the week, and make arrangements for Neya and Bailey (our dog) to be taken care of while we are gone. With the help of the wonderful people at his office, Bill got lodging arrangements taken care of, and spoke to our health insurance rep.Then it was time to pick Neya up from school, take her to dance, get her to her friend's house for trick-or-treating after dance, and take Collin out trick-or-treating. Needless to say we ate dinner on the run, and we all got to bed way too late.

I had to have Collin at the hospital at 8:00 Tuesday morning for his spinal tap. We started in the pediatric oncology clinic where he was weighed and measured. Since he was going to be put to sleep for the spinal tap, but his mediport was just removed a few weeks ago, he needed to have an IV put in for anesthesia. This can be difficult because his veins are so little, and since he couldn't have anything to eat or drink since the night before, it was even more challenging to find a good vein. One of the nurses spent some time looking for a few good veins, and put emla numbing cream on three possible sites. Then we had to wait for an hour for the emla cream to work. So, we headed to the activity room where we hung out with three THON students who were visiting for the day, and Collin worked on a craft for a little while. Then the doctor who would be doing the spinal tap was ready to examine Collin. This doctor is very laid back and down to earth; he is very entertaining (makes hospital gloves into balloons, etc.) and does his best to let kids be kids. He has tried many times over the last year and a half to make friends with Collin, but Collin hasn't warmed up to him very easily. Well, Tuesday he came into the activity room, put his hand out, and said "Come on Collin, let's go play in the snow." Collin just got up, took the doctor's hand, and off they went! They actually went outside for a few minutes and played in the snow. A few minutes later they came back in, and as Collin came around the corner, he waved and said "Hi Mom!" Then I followed him and the doctor into the exam room. The doctor checked Collin over, and had me sign the consent for the spinal tap. Then we went back to the nurse, and she was able to get the IV in the first site she tried, without Collin even making a peep. Then she put emla cream on his spine, and we went back to the waiting area until they were ready to do the procedure.

Around 11:00 or so, we headed to the South OR where the procedure was to be done. I held Collin on my lap as they hooked up the IV and started the anesthesia. A fellow came in and did the procedure under the oncologist's supervision. I stayed in the room with Collin, and in just a few minutes it was over and there were two small vials of clear fluid that would be tested for cancer cells. Then Collin was taken to a recovery area. It took him a while to wake up, but when he did he was happy and ready to eat. After he ate some crackers, drank some water, and the IV was removed, we were able to go home.

We are now in our (very small!)  hotel room in New York City. Collin's appointment at MSKCC is 11:00 tomorrow morning. I spoke to our oncologist earlier, but the final pathology report on the CSF has not been posted yet. She will check again later tonight and again tomorrow, and will let me know when she knows the results.