Tuesday, February 28, 2012

Monday, February 27, 2012

I've been meaning to update, but the last two weeks have been incredibly busy! The indoor yard sale fundraiser was held on February 11 in a local Knights of Columbus hall. The Knights let us into the hall the night before so donations could be dropped off and we could get things ready, they provided dinner Friday night to everyone who worked to set the yard sale up, and they opened the hall bright and early Saturday morning for the sale. They were extremely generous and accomodating, and we are overwhelmed and very grateful to them for everything they did for us! Some members of the Bishop McDevitt High School girl's softball team helped set up the sale Friday night, and we are thankful for their assistance as well. Thanks to the efforts of many, the sale was a big success. Due to the generosity of so many people, we had more donations of yard sale items and baked goods than we ever could have expected. We sold quite a lot of things, and we were able to donate unsold items to 5 other organizations. The unsold baby clothing and equipment was donated to Morning Star Pregnancy Services, as part of the local Bishop McDevitt High School softball team’s charitable fundraiser. The unsold books were donated to the East Shore Area Library’s book sale to raise funds for the library. Unsold blankets were donated to volunteers who assist homeless people. Unsold furniture was donated to the Salvation Army, and the remaining unsold items were donated to Goodwill. It feels good to know that we were able to help others while receiving help ourselves. And if it wasn't for the amazing kindness and support of some wonderful friends, none of this would have happened. To Michelle and Andy, Susan, MaryBeth, Greer, Payal and Andy, Jen, Pam, Erin, Kelly, JoAnn and Ken..I don't know how to ever thank you!

On Tuesday February 14, Collin was scheduled for a hearing test and hearing aid fitting. Bilateral hearing loss is an expected side effect of high dose chemotherapy, but Collin's slight (high frequency) hearing loss is in his right ear only. Our theory is that the hearing loss is more related to the brain surgery than chemo, since all of the physical deficits that Collin has are on his right side, which was the side affected by his brain surgery. The hearing test in November showed hearing loss in both ears, which is why a hearing aid was sheduled to be fitted. However, this month's hearing test results were consistent with the results from December's test and the tests prior to November, which showed only some loss in the right ear. It's possible that in November Collin could have had fluid in his ears, had an off day, or wasn't responding properly to the test for some other reason. Since all tests but one show only high frequency loss on one side, and it is not impacting his speech, Collin will not be fitted with a hearing aid at this time as expected.

On Thursday February 16, I shared Collin's story at Hershey High School's mini-THON kickoff assembly. Many schools throughout Central Pennsylvania hold their own mini dance marathons, modeled after Penn State University's THON, where students stay on their feet all night to raise money for the Four Diamonds Fund. All together, these mini-THONs raise over $1 million. Hershey High School will spend the rest of February and the month of March fundraising, and their mini-THON will be held from 6 pm March 30 through 6 am March 31. It is their 19th mini-THON. This is the second time I have shared Collin's story at Hershey High. I'm not a seasoned public speaker so I was nervous, but everyone was very friendly and welcoming, and I even ran into someone I haven't seen in years, which made my day! The students were very enthusiastic, and I know they will be successful in their efforts. We are planning to be there on March 30 to cheer them on!

On Friday February 17, we headed up to Penn State to attend our second THON. We were extremely excited for the weekend, and I purposely scheduled Collin's appointments around the weekend because we didn't want to miss it. We needed a little fun family vacation before the next six weeks of traveling and separation. The students in the fundraising organization that we were paired with, Penn State Altoona campus, have become like family to us. They are caring and hardworking, and their level of dedication is amazing to me. I am truly glad that they are role models for my children, especially Neya, who already talks about going to Penn State some day and being involved in THON. Altoona was the second highest-raising Commonwealth campus; they raised $82,872.57 of the record-breaking $10,686,924.83 grand total. We love our Altoona THON family, and are humbled by and proud of their efforts!

On Tuesday February 21, Collin had another MRI; this one had to be done 7-10 days before his first treatment at Sloan-Kettering. The MRI was scheduled for 12:30 pm. After the MRI was finished and Collin woke up from anesthesia, we went home so Collin could have something to eat, and then got on the road for NYC. We got to the Ronald McDonald House in NYC around 11:00 pm. It was a very long day, but everything went very smoothly, and Collin was a great traveler. And best of all, that evening I received the news from Collin's oncologist at Hershey that the MRI was all clear! I was very nervous since Collin had been off all of his maintenance meds for nearly a month; I was so afraid to hear that another tumor had grown in that time that I even had a nightmare about it. So, I was very relieved to hear that the MRI was clear!!

The following day we had to be at Sloan-Kettering for Collin's CSF flow study. In order for this upcoming treatment to work, Collin's cerebral-spinal fluid has to be flowing all throughout his brain and spine to carry the radioactive antibody everywhere it needs to go. There was no reason to think that he would have any problems with this, especially since he does not have a vp shunt, but they needed to make sure. So, they injected a radioactive dye into the ommaya reservoir in Collin's head, and did some sort of scan a few hours after the injection, and then again 24 hours later. Wednesday was a long day of just waiting around, and unfortunately Collin couldn't eat for most of the day since they anesthetised him for the scan, which didn't take place until after noon. But Collin was a trooper and handled everything very well-probably even better than I would have in his shoes. Thursday his scan was a bit earlier, so he didn't have to wait quite as long to eat. Then we were on our way back home. We found out on Friday that the CSF flow study results were good, and Collin was cleared to begin treatment on February 29.

On Friday we also learned that we needed to head back to NYC today. We have an appointment tomorrow to sign treatment consent forms, and then Collin will receive his first treatment on Wednesday. On Thursday and Friday he will have more scans to monitor how long it takes for the radiation to leave his body. Hopefully his scan on Friday will be early enough that we can travel back home afterwards, since it is Neya's 8th birthday, and I'd like to be with her that day!

Please pray that the trip this week is a smooth one, and that Collin's treatment goes well, without making him too sick. Also please keep in your prayers fellow medulloblastoma warrior Bree (www.caringbridge.org/visit/breehaga), who has relapsed and is undergoing another brain surgery today to remove new tumors, and AT/RT warrior Anna Rose (www.caringbridge.org/visit/weloveannarose), who earned her wings Sunday February 19.

Saturday, February 4, 2012

Friday, February 3, 2012

Friday, February 3, 2012

We checked in at the hospital Wednesday morning for the surgery to place the ommaya reservoir in Collin's head. Everything went very smoothly. As always, I requested to be able to escort him to the OR and stay with him until he was asleep. This kept Collin calm and cooperative, and eliminated the need for pre-medicating him to keep him calm.  The surgery went quickly and without complications, and Collin woke up from the anesthesia quickly. He was a little agitated at first because he was hungry. He ate some pudding, and then begged for chicken soup. The PACU nurse got a kick out of that-he said he's never had that request before! Once Collin had his soup, he was much happier. He was then moved to the Same-Day Unit to be observed for a few hours. Originally they were going to have him stay overnight for observation, but since he was eating, playing, and acting normally and didn't seem to have any pain, they let us come home.

Wednesday evening Collin had a low grade fever, but we were told that was not unexpected after surgery. I gave him Tylenol as directed. At around 12:30 Thursday morning, Collin was asleep one minute and projectile vomiting the next. His fever was higher despite the dose of Tylenol an hour and half before. The fever was not quite high enough to meet the neurosurgery protocol for calling after hours, but it was high enough to meet the oncology protocol for calling after hours. I decided to call neurosurgery first, but the person I spoke to wasn't concerned, saying a fever and vomiting was normal and to call back if I couldn't wake Collin. I wasn't comfortable with that though since I know how quickly things can happen in someone who is immuno compromised, so I called the pediatric oncologist on call. He told me he would feel better if they checked Collin out, and was going to have us come into the hospital. He called the hospital to make the arrangements, but then called me back twice, once to tell me there were no open beds and that I should take Collin to the ED, and then again to tell me the ED was backed up by 75 people and that I should keep Collin home and keep watching him, and that unless things got worse overnight, Collin could be seen in the clinic Thursday morning. Thankfully, the vomiting stopped and his fever slowly came down, so Thursday it was decided he didn't need to be seen in the clinic. We went to his therapy appointments instead, and he ended up having one of his best speech therapy sessions yet! He was saying his words really well, was participating enthusiastically, and kept making us laugh. His humorous streak continued in occupational therapy, and it was a really fun morning. 

This morning when Collin woke up, the right side of his face was so swollen that his right eye is almost swollen completely closed. I spoke to the neurosurgery fellow who knows him, and although she's surprised the swelling didn't happen until today, she said swelling after surgery isn't uncommon. Collin's ommaya reservoir was placed just behind his forehead on the right side, where the neurosurgeon could use the burr hole/canal made from the external ventricular drain in 2010, so the swelling is most likely just related to the surgery. As long as no fever develops and the swelling doesn't increase, she isn't concerned about it. Hopefully it will subside in the next few days.

We also finally have the schedule for the CSF flow study that has to be done in NY. The second half of February is going to make my head spin. We will be in State College for THON (which is as important as Christmas to us, so we don't want to miss it) from February 17-20. On the afternoon of the 21st he has an MRI in Hershey, and then that evening we will have to travel to NY. On the 22nd he will be put to sleep, be injected with a radio tag dye, and have a scan. Then on the 23rd, twenty-four hours after the dye injection, he will have a second scan, also under anesthesia. I'm not sure if we will be able to come home that same day, or if we will have to meet with the doctor on the 24th before we are able to come home. My parents arrive from Texas the evening of the 24th,  and then we will travel back to NY on the 27th so that Collin can start treatment on the 28th. We're not yet sure what day that week we will get to come home.

After reviewing the treatment plan and deciding the treatment is medically necessary, our insurance carrier has agreed to cover it. We are relieved and thankful because the estimated cost we were given for the treatment, which does include worst case scenarios that hopefully won't happen but would help make the cost so high, was over $400 K. Our wonderful friends are still proceeding with fundraising plans to help cover our travel/lodging/food expenses, and because we still don't know what the future holds as far as what treatments Collin will need, but at least we don't need to raise anywhere near $400 K right now! Thank you again for any amount that you are able to contribute, no matter how small. Your help, and your prayers, are very much appreciated!