Monday, January 31, 2011

Monday, January 31 - Maintenance Chemo Cycle 1, Day 15

Last week, Neya came down with a nasty respiratory virus that kept her home from school for two days. By Friday, Collin and I started with the same symptoms. I kept a close eye on Collin's temperature, and when it got to 100.8 Friday afternoon, I decided to call the oncologist's nurse to let her know. She said if Collin's temp reached 101 over the weekend, I was to call and bring him to the ER for blood cultures, just to make sure his mediport wasn't infected. All weekend I kept checking his temp; thankfully it never made it to 101.

This morning we had a previously scheduled clinic appointment. The oncologist checked Collin over, and blood was drawn to check his counts. The visit was smooth and uneventful. We got home and had lunch, but after lunch when I gave Collin his eyedrops, he felt very warm to me, so I took his temp again. Wouldn't you know it was 101.2! I called the clinic to let them know, and just as I suspected, they wanted us to come back so they could draw more blood for cultures. Since Collin's mediport had been accessed this morning for the first blood draw, we couldn't ignore the slim chance that he picked up some sort of infection when the port was accessed. So, back to the clinic we went; thankfully we live close! They took more blood for cultures, and gave him an IV dose of antibiotics. His blood counts are pretty good, so since he has a bit of an immune system, he didn't need to be admitted to the hospital.

Unfortunately, Collin is very congested and has a bad cough because of all the mucus. Sometimes he will have a coughing fit that will end up causing him to vomit. Of course he had one of these episodes in the car as we were leaving the clinic. I pulled over and ran around to his side of the car, but I wasn't quite fast enough to avoid a big mess. I am continuing to watch his temperature; this evening it went up to 101.9. I'm hoping it comes down soon and stays down. Depending on what the weather brings tomorrow, I'm hoping to avoid another trip to the clinic!

Our little friend Caiden, who is only a few months yonger than Collin, has successfully completed his stem cell transplants, and will be going home tomorrow! Please continue to keep him in your prayers; his parents face a very tough decision about the next step in his treatment. Please also continue to pray for our other little friend Sean, who is currently in the hospital for his stem cell transplants. And if it's not too much to ask, please add two more great kids and cancer warriors to your prayers, Hailey and Zach. They have also been through a lot. No child should ever have to go through what any of these kids have been through; cancer really sucks!

Thursday, January 27, 2011

Donations Welcome!

The Penn State IFC/Panhellenic Dance Marathon, affectionately referred to as THON, is the largest student-run philanthropy in the world. It began in 1973, when a small group of dedicated Penn State students held the first Dance Marathon. That year, 39 dancer couples participated and raised $2,000. Since then, THON’s presence in the Penn State community has grown exponentially. THON now has 15,000 student volunteers, 700 dancers, and is a year-long effort by extremely dedicated students that raises funds and awareness for the fight against pediatric cancer. THON has raised more than $69 million, benefiting The Four Diamonds Fund at Penn State Children’s Hospital. See the THON 2011 video below:

The Four Diamonds Fund was established by Charles and Irma Millard after the death of their son, Christopher, who was diagnosed with cancer at the age of 11. Because of THON’s support, The Fund is able to offset the cost of treatment that a family’s insurance won’t cover, as well as provide for other expenses that may affect the welfare of the child. It also supports the medical team that cares for the children and funds pediatric cancer research through start-up grants and the Four Diamonds Pediatric Cancer Research Institute. Below is a video about the Four Diamonds Fund:

This is our first year as a THON family. We were paired with one of the many student organizations that make up THON, and our organization (Penn State Altoona campus' THON group) has used Collin and his fight against brain cancer to be their inspiration to raise as much money as possible. There are six students from Altoona THON who will be dancing for Collin during this year's THON weekend, February 18-20. The dancers will dance for 46 hours straight, without sitting or sleeping. We are very excited to attend our first THON, and will be there all weekend to cheer them on.

Please consider joining the fight against pediatric cancer by making a donation to THON. Any amount is a big help. Donations can be made easily and securely online. Click this link to go to THON’s secure donation page. Complete the required information. To make sure that Collin's fund-raising group is credited with your donation, under the subtitle “Gift Amount/Designation” please choose Altoona from the drop-down box. If you prefer to send a check, it can be made out to Penn State Dance Marathon, and you can write Altoona #165 on the memo line. Checks can be mailed to Penn State Dance Marathon, 210 HUB, University Park, PA 16802.

Together, we’ll make a difference in the life of a child.

FTK....For The Kids!!

What the Four Diamonds Fund Means to Us

Every year, the radio station I listen to does a fund-raising drive for a well known hospital that treats kids with cancer. I didn't think that any small amount I might be able to contribute would make a difference at all, and the stories of kids being diagnosed with cancer, undergoing treatments that would make them sick, cause their hair to fall out and prevent them from just being kids, or worse the stories of the kids who die because of cancer, were just too hard to listen to. They would turn me into a sobbing mess on my way to where ever it was I was driving. I naively thought that cancer was something that happened to other people's kids, that it would never happen to mine. Eventually I couldn't bear to listen anymore, and I'd turn the radio off. Last April, my life was changed forever when my 16 month old son was diagnosed with cancer. Suddenly we became one of those stories I couldn't bear to listen to.

There are no words that can describe what it feels like to be told your child has cancer. It's almost impossible to breathe. It's impossible to understand how a sweet, innocent child can have cancer. Collin didn't do anything to deserve cancer. He hadn't had a chance to live his life yet; how was it possible that he may never get that chance? Suddenly, there was very little we had control over. We lived minute to minute. All we could focus on was Collin; we couldn't think about anything else.

During the first few days in the hospital, a social worker came to talk to us about our insurance and other financial resources. She mentioned the Four Diamonds Fund and gave us some paperwork to fill out. She explained that one way the Four Diamonds Fund helps children with cancer who are treated at Penn State Hershey Children's Hospital is by covering whatever cost isn't covered by insurance. It wasn't until that moment that the potential financial impact of this terrifying situation that had been thrust upon us began to sink in. I turned to the social worker with tears in my eyes and said, "You mean we're not going to lose our house?"

The fact that an organization exists that provides that level of assistance seemed unreal to me. But the Four Diamonds Fund is very real. When parents are faced with the possibility of losing a child to cancer, they shouldn't have to worry about whether or not they can afford the care their child needs. Not only does the Four Diamonds Fund provide financial assistance to pediatric cancer patients at Penn State Hershey Children's Hospital, it provides funding for many of the staff that provide valuable care to these children. Collin's music therapist was one of the first people to get a reaction from him that showed us he was still Collin after the immediate effects of brain surgery left me wondering if he would ever be himself again. To see him calmed by music, to see him interact by reaching for an instrument for the first time, was a priceless moment that left everyone in the room with tears in their eyes. The Child Life Specialists who helped us talk to our six-year-old daughter about cancer without scaring her, and who provide so many wonderful activities that allow kids to just be kids despite being in the hospital, are amazing. The social workers, the music therapist, the child life specialists, and many other invaluable staff are supported by the Four Diamonds Fund. And on top of all of the wonderful people and services I have mentioned, there is research being done every day at Penn State Hershey Children's Hospital, research that will someday lead to a cure for childhood cancer. This research that allows children and their families to hold on to hope wouldn't be possible without the Four Diamonds Fund.

After spending the majority of time from April 22 to November 13, 2010 in the hospital undergoing brain surgery to resect the tumor, six rounds of chemo, and a stem cell rescue, Collin is home and doing amazingly well. He is learning to talk, and walk. He is receiving physical, occupational, and speech therapy a few times a week, and just started six months of maintenance chemo that we give him at home. There are still challenges ahead for him, but he seems totally unaffected by his journey. It's like being sick, long hospital stays, losing his hair, undergoing regular blood draws and MRIs is all normal to him, because really that's what he's known for half of his life. He just takes it all in stride and does what he has to do. He is the strongest person I know, and every day I am thankful that he is still with us. I hope he will have the chance to grow up and do something important with his life.

We have had many, many blessings throughout this journey, and for them we are grateful. The Four Diamonds Fund and THON are two of these blessings. We are looking forward to attending our first THON next month. It is difficult to adequately express the gratitude we feel for all of the efforts put forth by each and every Penn State student involved in THON. The amount of love we have received from the THON family, and the result of their year-long efforts to raise money for the Four Diamonds Fund are truly inspiring.

Go State-Beat Cancer!! FTK!!

With Love and Gratitude,
The Kratzer Family
Jenn, Bill, Neya (6 years) & Collin (2 years)

Friday, January 21, 2011

Friday, January 21 - Day +100!!! Maintenance Chemo Cycle 1, Day 5

Today is 100 days since Collin had his stem cell transplant, and tomorrow is nine months since he was diagnosed. It's hard to believe how fast the time has gone. In the beginning of this journey, I could only bear to look forward minute by minute, and now looking back, it's amazing to see how far Collin has come. He is my hero! Words can't describe how thankful I am that he's doing so well, but in a way I'm afraid to celebrate yet because I know things can change in a heartbeat. I'm doing my best to enjoy every moment I have with him, because I know what a gift each one is!

Monday, January 17, 2011

Monday, January 17 - Day +96; Maintenance Chemo Cycle 1, Day 1

Collin started his 6 months of maintenance chemo tonight. The drug he's getting is called Temodar, and he's had it before. It may cause nausea and vomiting, so Collin's oncologist suggested it be given at bed time so he won't be bothered much; she also advised me to give him Zofran (an anti-emetic) at least an hour beforehand. The drug also should be given on an empty stomach, either one hour before or two hours after a meal, and should be given about the same time every day. Since Collin goes to bed at 8:00 pm, my goal was for him to be finished eating dinner and having his other medications at 6:00 pm, so I could give him the Temodar at 8:00 pm before he went to sleep. Well, you know what they say about the best laid plans...dinner ran late, and then when I gave Collin his other medications, he threw them up (there is one that makes him gag at times, and then he throws up). So, I spoke to the oncologist on-call, and he said I could re-dose the meds that Collin threw up. So I did, and then at 8:30 pm I gave him the chemo. I was nervous, because the last time I had to give Collin chemo, I put it in his feeding tube, and at least I knew he wouldn't be able to spit it out; I felt like there was less of a chance that something could go wrong. Without the feeding tube, I felt like I had less control.

So at 8:30 pm, I brought Collin downstairs, got the chemo out of the fridge (most people have normal things like milk, butter, and eggs in their fridge!), laid Collin on the changing table, put on gloves, took a deep breath, and slowly squirted the chemo into the back of Collin's throat. It was over in a second, and he didn't even try to spit anything out. One day down, only about one hundred seventy nine to go!

Friday, January 14, 2011

Friday, January 14 - Day +93

Yesterday Collin had his latest MRI. I was worried it would be a rough morning since he wasn't allowed to eat because of the anesthesia (lately he's been eating like he's making up for lost time) but luckily he handled it pretty well. The MRI was scheduled for 10:00 am, which was also helpful (and certainly better than being scheduled for 1:00 pm and having to deny him food for longer). Since his Broviac is no longer there to inject Propofol into, they used gas to put him to sleep. The gas doesn't smell good, and he fights the mask as it is put over his face, but luckily he goes under quickly. Once he was asleep, they inserted an IV and drew blood for labwork, and then took him and placed him in the MRI machine. It took about two and a half hours since they scanned his brain and spine (it amounts to a few hundred images taken) and afterwards, Collin woke up very quickly and calmly. I was not able to get results before we left the hospital, so I figured I would have to wait for them until his clinic appointment this afternoon, and was trying to assume that no news is good news. Then, about 8:30 last night, the phone rang, and it was Collin's oncologist. She said, "You didn't think I'd make to you go to sleep without knowing anything, did you?" She then told me everything was clear! It was the best news we could have hoped for!

Today Collin had appointments with both his oncologist and his neurosurgeon. The neurosurgeon agreed that the MRI was great, and both doctors seemed very pleased with how Collin is doing. What a huge relief! Over the next six months, we will continue to closely monitor the right side of Collin's face; if it doesn't show any improvement by then, we can consult a plastic surgeon to discuss surgery to stretch and re-connect the nerve that controls facial movement. Also over the next six months, Collin will be given maintenance chemo to give him the best chance possible of no relapse. The maintenance chemo will begin Monday, and we will give it orally at home. Three of the drugs are ones that he has had before: Temodar, Cytoxan, and Etoposide. The fourth, Accutane, is new to Collin. During the maintenance chemo, Collin will be seen in the clinic every other week to be monitored, have his blood counts and other labs checked, etc. Hopefully the maintenance chemo won't cause a lot of vomiting, but he will be started back on the anti-emetic Zofran just in case. And hopefully Collin will cooperate with taking the chemo by mouth so we don't have to put the feeding tube back in!

On Wednesday, Collin had his best outpatient speech therapy appointment yet. At first he wasn't too willing to participate and verbalize much, but then something clicked and he started talking more. He participated with such enthusiasm it brought tears to my eyes! He went on to have a great physical therapy session as well, and his PT feels he'll be walking soon!

Wednesday, January 12, 2011

Wednesday, January 12 - Day +91

Collin has had some great therapy sessions this week; his enthusiasm and willingness to participate are fun to see. Yesterday in OT and PT he was eager to "play" and even initiated his own agenda; he has figured out how to climb up onto the little bench he usually stands at and leans on. He now climbs up onto the bench and then sits up tall, puffs out his chest, and looks all around with his big half-grin, clearly very pleased with himself. Of course he has no awareness of safety, so we have to make sure he doesn't fall off and help him get down by turning around and putting his feet down first. He's also getting more confident when standing, and lets go of whatever he's holding on to for short periods of time. His physical therapist feels it may not be too much longer until he starts to walk on his own.

He's also been eating so well; he'll eat almost anything I put in front of him (his new favorite as of dinner last night is raw sliced bell peppers sticks with ranch salad dressing) and sometimes he'll eat so much I wonder where he's putting it!

I've no longer had to worry about Collin throwing up; it rarely happens, and when it does, it's usually a result of gagging because he takes too big a bite of food. That being said, he suddenly had two eisodes where he was just sitting on the floor and vomited for no obvious reason, just out of the blue, one yesterday and one the day before. I'm trying really hard not to worry. I'm trying really hard to just focus on how well he seems to be doing all around, with therapy, how he's eating, etc. and that he is continually making progress in his recovery. I'm trying really hard to ignore the little voice in my head that wonders if two episodes of vomiting for no reason means that something is putting pressure on that area of his brain again.

His three-month MRI is tomorrow. Please say an extra prayer that it will show no evidence of disease. I hate living in fear...

Sunday, January 9, 2011

Sunday, January 9 - Day +88

Collin and I have a busy week coming up! He has two therapy appointments each day Monday, Tuesday, and Wednesday. On Thursday he has his next MRI, and on Friday we have clinic appointments with his oncologist and neurosurgeon. He's doing so well and isn't exhibiting any symptoms that would indicate any problems, so the rational side of me says there's no reason to think the MRI would show anything negative; but there's another part of me that worries that the fact that he is doing so well is too good to be true and I should be prepared for the worst. I know every parent of cancer warriors feels overwhelming anxiety before each MRI (dubbed "scanxiety"); I'm trying to think positively for Collin and not to let worry get the best of me.

I have spent the last few weekends trying to get our house back in shape. I have cleaned out and/or reorganized the basement playroom and storage areas, and have moved on to closets in the rest of the house. I have thrown some things away, and passed a lot of other things on to others who can use them. I have been able to put away most of the medical supplies that seemed to take over large areas of space in certain rooms; once I'm sure we won't need them anymore, I will get rid of them as well. I spent 75% of 2010 dealing with cancer and very little else, so now I feel like I'm taking back a little of the control that cancer took away. It's a nice feeling.

Thursday, January 6, 2011

Thursday, January 6 - Day +85

Collin had another hearing test today to monitor his hearing, since the chemo he received can damage high frequency hearing. The test showed some loss in his right ear, but it's not enough to affect his learning to talk, and he doesn't require a hearing aide at this time. The plan is to continue to monitor his hearing, so he'll have another test in three months. He has his next MRI next Thursday, and then we will meet with both his oncologist and his neurosurgeon in the clinic on Friday.

I have mentioned two other little guys, Caiden and Sean, who we met in the hospital and are being treated with similar courses of chemo as Collin. They are one-and-a-half and two years old respectively. Both boys will be undergoing stem cell transplants within the next few weeks. Please keep them and their families in your prayers!

Monday, January 3, 2011

Monday, January 3 - Day +82

I have realized that I have neglected to mention the fact that Collin doesn't have his feeding tube anymore. On Saturday December 11, I gave Collin his morning meds by mouth instead of through the feeding tube to see if he'd take them willingly. As an infant, he would open his mouth like a little bird when he saw the syringe of reflux medication and swallow it without hesitation, even though it didn't taste very good. Luckily, he was still willing to take his medicine as easily, so I took his feeding tube out that morning in December. I knew that if he didn't cooperate with his medicine, or if he didn't start to eat better, I could always put the tube back in. Thankfully, he continues to take his medicine like it's no big deal (he could teach his sister a thing or two about that!), he is eating normal food, and the amount he eats every day has returned to what it was before he got sick last year. It's really nice to see him without a tube in his nose!

Over the last few weeks, we have noticed Collin moving his tongue on the right side of his mouth, pushing his tongue against the inside of his right cheek. He is also chewing his food on the right side of his mouth more often. I mentioned this to his Speech Therapist, and she wondered if it was possible that he is starting to get back sensation on the right side of his face. He has had no expression on his right side; when he smiles, it's only the left side of his face that moves. But this morning when he smiled, there was a little dimple on his right cheek! I remember when he started to regain movement on the left side of his face, the first change I noticed was a little twitch above the left corner of his mouth. It was exremely subtle at first, but it was there. So after seeing that dimple this morning, I am hopeful that he is starting to regain sensation and movement on the right side of his face! His hair, eyelashes, and eyebrows are also growing in, very quickly actually. He's beginning to look more like himself!