Sunday, June 29, 2008

It hasn't been a very good weekend...

It's pretty hot today so Michael is laying quietly on the deck, enjoying the breeze and trying to stay cool.

Michael has been pretty sick this weekend from his chemo treatment on Friday. He hasn't kept anything down since Friday (including his Zofran) except a small bowl of fruit last night. I was supposed to go to Binghamton for one of Jenny's bridal showers yesterday but didn't because Michael was so sick. And today we were going to go to an air show with my Dad at the local army base but had to cancel because Michael wasn't up to it.

Michael is sick like he was when he first started treatments. His little body must have gotten used to the chemo medicines over the last 5 months. But with his 6 week hiatus while his counts were down, it must have gotten used to not having chemo. I hope his body adjusts again quickly. When we originally planned his Make-A-Wish trip, he was on his 2 week break and should have been feeling good. Now the trip is right in the middle of one of his 4 week treatments. The same is true of Jenny's wedding. He was supposed to be on break and now has to have chemo the day before the wedding. Keep your fingers crossed that he feels up to enjoying those 2 things this summer. JoAnne

Friday, June 27, 2008

We were good to go today...

We made the trip to Syracuse this morning. We didn't have Michael's blood checked at home this week because if his counts were still wacky, we wanted the doctors to check him over good anyway. Fortunately, all of his counts were perfect and he was able to receive his treatment and his monthly antibiotic. Everything went well. I think everyone was happy to see Michael and I know he was happy to see them.

Last night, at Michael's last t-ball game, he collided with one of the kids from the other team as Michael was running to catch the ball and the other kid was running to second base. We heard the collision all the way across the field and they both fell to the ground like stones. Michael was laying on the ground crying, so Jeff went out on the field to check on him. He brought him back to the bleachers and we could tell right away that Michael was already starting to develop a nasty bruise on his knee and a fat lip. He rested for a couple of minutes and then went back to finish the game.

When we got home, Michael asked me to take a picture of his knee so that if it healed overnight, he could still show the staff in Syracuse his latest battle wound. As each of the doctors and nurses greeted Michael today, he recounted the details of his adventure and showed them each his bruise. The phrase "plastic bubble" came up numerous times and Michael laughed each time.

We were a little sad today - one of Michael's regular nurses, Aileen, is retiring Tuesday so today was our last time visiting with her. She said if she is ever up this way (heading to Canada) she would stop and see us and I hope she does.

Here are a last couple of pictures from Michael's first t-ball season:

Hitting the ball - he has been practising with Daddy and got a couple of really good hits this past week.

Here he is rounding the bases and heading for third.

Michael informed us last night that now that t-ball is over, he would now like to try basketball !! I didn't have the heart to tell him it is the wrong season. Swimming lessons start back up soon, so I think he will be happy with that.

Our little buddy is resting now. Let's hope the Zofran keeps him from getting sick. Please keep Michael in your thoughts and prayers. JoAnne

Thursday, June 26, 2008

Graduation pictures (finally)...

I'm sorry I didn't post the graduation pictures Tuesday night as promised but it has been a rough week around here. We thought we were going to lose Chance and it was breaking all of our hearts. She has been having problems with one of her back legs for a while. A month ago, the vet said it was torn ligaments and gave us some medicine. We gave it to her faithfully but she seemed to get worse instead of better.

Tuesday night, Chance was outside with Michael and I when suddenly she couldn't stand up. We tried for a while to get her up and finally had to call our neighbor and his son to carry her in the house for us (Jeff was at work). She stayed where they laid her for the whole night. It was the first night in her life that she didn't sleep in our bedroom on her doggie bed.

The next morning Jeff took her to the vet and we were sure she wouldn't be coming home. Michael and I cried while they were gone until Jeff called and gave us the cautiously optimistic news - they saw a different vet and she gave a different diagnosis.

The doctor said it is actually nerve damage in her spine and it is causing something similar to paralysis. This diagnosis makes more sense to us because we never thought Chance was in pain or suffering like she would with ligament damage. And it turns out that she's not - she is numb. The vet gave us some medicine and said if Chance was going to get better, we would see improvement in 2 days. I 'm thrilled to say that by this morning she could stand and walk with a limp. She still isn't 100% but at least now we have some hope and some more precious time with her.

And now - without further ado: Our favorite Pre-K Class of 2008 !!

First, the class delighted the audience with a couple songs complete with hand gestures.

Then they waited patiently for their turn to walk up to the podium to receive their diploma.

Here is Michael receiving his diploma from the school principal, Mr. O'Donnell.

And here is Michael with 2 ladies he is surely going to miss, his teacher, Mrs. Adams (left) and the classroom aide, Mrs. Littlefield (right).

It was a wonderful ceremony and I am sure Michael will keep wonderful memories of his first year of school tucked in his heart always.

Keep your fingers crossed that Michael can receive chemo tomorrow. JoAnne

Friday, June 20, 2008

Promising advances in treatments...

When Dr. Pilcher gave us Michael's diagnosis of a pediatric brain tumor, one of my first questions was "Is he going to survive?" Dr. Pilcher responded that he has several patients that received the same diagnosis as Michael at a young age and that they were now young adults. So, yes, he believes he will. But he added that even if things don't go as planned, every day we buy Michael brings new and exciting treatments and cures.

I came across the following article online in the British newspaper, The Telegraph, and it brings me hope that someday (hopefully very soon) they will be able to do something similar with brain tumors. (I have read where they are working with something like this in brain tumor patients in Switzerland.) My greatest hope is that Michael will not only reach adulthood but be able to lead a full and happy life free of the threat of his tumor advancing (I've never been one to dream small!). And that he can do so without further surgeries or poisonous drugs. This story gives me that hope:

Cancer patient recovers after injection of immune cells
By Roger Highfield, Science Editor

A cancer patient has made a full recovery after being injected with billions of his own immune cells in the first case of its kind, doctors have disclosed.

The 52-year-old, who was suffering from advanced skin cancer, was free from tumours within eight weeks of undergoing the procedure.

After two years he is still free from the disease which had spread to his lymph nodes and one of his lungs.

Doctors took cells from the man's own defence system that were found to attack the cancer cells best, cloned them and injected back into his body, in a process known as "immunotherapy".

Experts said that the case could mark a landmark in the treatment of cancer.

It raises hopes of a possible new way of fighting the disease, which claims 150,000 lives in Britain every year.

Ed Yong, health information manager at Cancer Research UK, said: "It's very exciting to see a cancer patient being successfully treated using immune cells cloned from his own body. While it's always good news when anyone with cancer gets the all clear, this treatment will need to be tested in large clinical trials to work out how widely it could be used."

However, the treatment could prove extremely expensive and scientists say that more research is needed to prove its effectiveness.

Genetically altered white blood cells have been used before to treat cancer patients but this is the first study to show that simply growing vast numbers of the few immune cells in the body to attack a cancer can be safe and effective.

Normally there are too few of the cells in a patient's body to effectively fight cancer.

Dr Cassian Yee, who led the team at the Fred Hutchinson Cancer Research Centre in Seattle, said: "For this patient we were successful, but we would need to confirm the effectiveness of therapy in a larger study."

The work raises hopes that this approach could not only offer a more effective treatment for skin cancer, or melanoma, which kills around 2,000 people in Britain alone, but be applied to other cancers too.

The patient was one of nine with metastatic melanoma, that is skin cancer that has spread, who were being treated in a recently completed clinical trial to test bigger and bigger doses of their own white blood cells.

Larger, more elaborate, trials are now under way.

Almost 9,000 new cases of melanoma, the most serious form of skin cancer, are diagnosed every year in Britain, and nearly 2,000 patients die from the disease.

Prof Peter Johnson, Cancer Research UK's chief clinician, said: "This is another interesting demonstration of the huge power of the immune system to fight some types of cancer.

"Although the technique is complex and difficult to use for all but a few patients, the principle that someone's own immune cells can be expanded and made to work in this way is very encouraging for the work that Cancer Research UK and others are carrying out."

Immunotherapy, in which a patients own immune cells are used to treat cancer, is a growing area of research that aims to develop less-toxic treatments than standard chemotherapy and radiation.

Because cancer occurs when the body's own cells grow out of control, the immune system only responds weakly.

The ability of the body's own defences to tackle cancer in this case is all the more remarkable because most deadly feature of the disease is its ability to colonise other parts of the body, when it becomes much more difficult to treat.

A dramatic example of immunotherapy was reported two years ago by one pioneer of the field, Dr Steven Rosenberg of the US National Cancer Institute, who eradicated cancer from two dying men using genetically modified versions of their own cells.

Both Mark Origer and "Thomas M" were suffering from advanced melanoma but the hope is that such methods could be customised to attack other common cancers, notably breast, colon and lung.

Dr Rosenberg told The Daily Telegraph the new work is an "interesting study that helps to confirm the effectiveness of cell transfer immunotherapy for treating cancer patients. We have now treated 93 patients with metastatic melanoma using their own anti-tumour cells with response rates up to 72 per cent. Mark Origer remains disease free now over three years after treatment."

Please keep Michael in your thoughts and prayers, JoAnne

Thursday, June 19, 2008

No trip to Syracuse again this week...

Jeff took Michael first thing this morning to have his lab work done for this week. Dr. Kennedy called this afternoon, after receiving a copy of the test results, and said Michael's ANC counts are still too low to receive chemo. She said Michael's platelets are up to 268 from a low of 21 a couple of weeks ago (which is great) but his ANC only went from 412 to just over 600 (and the minimum to receive treatments is 1,000). She said he has plenty of "new" monocytes, so his total neutrophil count should be good next week. Dr. Kennedy thinks that Michael has been fighting some sort of strong viral infection that didn't manifest any symptoms and that that is why his counts are so screwy. So, it looks like we get another week off.

I will admit though that I am starting to panic (just a little). I am afraid that by not receiving chemo for 6 weeks, that the remaining tumor in Michael's head will start to grow again and we will get bad news when Michael has his next MRI (which is scheduled for July 10th). Dr. Kennedy said that Michael's tumor is a slow growing tumor so she hopes that there are enough chemo drugs still in his system to deter the tumor from growing until we can resume treatments. She also said that Michael will only receive a dose of Carboplatin at 75% of the strength he has been receiving for the next maintenance phase (4 weeks). If his counts are good after that, he will go back up to 100% with the following round.

Overall, Michael is doing well these days. And, I am happy to report that he is almost bruise free!! He has been sleeping a little more than usual but has plenty of energy to do his favorite things when he is awake.

Like playing outside and driving his tractor around the yard...

And playing t-ball...

And he had a ball at Family Fun Day at school last Friday. When I got there, the younger kids were in the gym (where it was cooler) playing with the parachutes and having a great time...

(That's Michael in the plaid shirt and blue shorts.)

And he's is still talking about the giant slide they had for the kids...

I'm so glad he didn't have to miss out on the day with his friends. And tomorrow is the last Friday of the school year, so I am happy Michael gets to go to school tomorrow (since he can't have chemo). Graduation is next Tuesday, so be sure to check back Tuesday night to see pictures of our little graduate. Until then, please keep Michael in your thoughts and prayers, JoAnne

Friday, June 13, 2008

There is a silver lining...

I just spoke with one of the nurses from Unit 5C and Michael's counts are not good enough for chemo again this week. His platelet count is back up to 96, so that is great but his ANC (Absolute Neutrophil Counts) were only 412 and have to be at least 1,000. (If you have forgotten my lesson on neutrophils, click here or here.) That means that if Michael gets any sort of fever, we have to call the doctors in Syracuse, they have to check his blood and if it is too low, he would have to be hospitalized. So, keep your fingers crossed that doesn't happen.

On the positive side - Michael can go to Family Fun Day at school today! (I am doing a happy dance for him.) He was actually much better today. In fact when he first woke up, he was cuddled up next to me and just started giggling. I asked him what was so funny and he said "nothing" and just started smiling. It was a great way to start our day! I think he just needed to vent yesterday and get some things off his chest yesterday (don't we all sometimes?).

The nurse said Dr. Kennedy believes that Michael will be good for chemo next week so I will let you know. We are going to have his blood tested Thursday afternoon again next week. Please keep Michael in your thoughts and prayers, JoAnne

Thursday, June 12, 2008

Michael was heartbroken today and it broke my heart...

Michael is still pretty tired. Last night, he laid on the living room floor and fell asleep within seconds. And he had a terrible time waking up this morning. In fact, he slept an hour later than usual and had a terrible time getting going.

His spirits were better when he got off the school bus this afternoon - that is until I told him that we had to go to the hospital lab to have his blood checked to see if his counts had come up enough so he can have chemo tomorrow. He had made plans with the little boy across the street and was sad that he couldn't play with him after school. He also didn't like that he had to get his blood drawn.

Dr. Kennedy had written an order for Michael to have a finger stick because we thought that would be the least traumatic but he didn't take that well. The last time he had a finger stick, it was by a new nurse and she really hurt him and he remembered. So, even before we got in the car, Michael started crying and begging me not to take him.

He asked me if he could tell me something and I told him he could tell me anything. He told me he didn't know if he could be brave anymore. That he wished that his nose had never felt funny. Or that he had never had a bad thing in his head. And that he was sorry that he had to have brain surgery. Because if none of those things had happened he wouldn't have to have treatments now. And if he didn't have to have treatments, he wouldn't have to get needles all the time and he wouldn't miss fun things at school. And that when the other kids were at school having fun, he could be there too.

You see - they seem to have all of the fun days at school on Friday. And tomorrow is the school's Annual Family Fun Day. That is where all of the kids get to go outside for the afternoon. They have a cookout and play games all afternoon. There are relay races, tug of wars and a host of other fun activities. The parents are invited to come to school and cheer on their little athletes. The teachers have been getting the kids excited about it all week and Michael is heartbroken that he has to miss it.

So I listened to his little broken heart. And I hugged him. And with every tear I brushed away, my own heart broke a little more. Then I told him I understood how he felt.

But I wanted to tell him that I wish his nose had never felt funny. Or that he had never had a bad thing in his head. And that I was sorry that he had had to have brain surgery. Because if none of those things had happened, he wouldn't have to have treatments now. And if he didn't have to have treatments now, he wouldn't have to have needles and he wouldn't have to miss the fun things at school. And that when the other kids were at school having fun, he could be there too.

But I couldn't tell him any of those things so I told him he didn't have to be brave if he didn't want to. And I told him that I would be with him whenever he needed me. And that he could tell me anything I would listen and understand.

By the time we got to the hospital, brave little Michael was back. We had to walk past the Emergency room entrance to get to the lab and he chattered about hurting his port, and cutting his finger, and his knee losing the fight with the rock.

"Remember Mama?" he asked.

"I will never forget little buddy" I answered.

He held my hand into the hospital and pushed the buttons on the elevator. And when the nurse called his name, he went right behind her and got up in the chair. He showed her which finger he wanted her to use so that it wouldn't hurt when he wore his baseball glove. And the nurse didn't hurt him very much.

Afterwards, I took my brave little boy out for dinner and we went to t-ball practice. Then we worked in the gardens until Daddy got home from work. He is now sleeping peacefully in his bed. His emotions are once again under control and he is ready to face tomorrow. Dr. Kennedy will call in the morning to let us know if Michael's counts are good enough for chemo. I will keep you updated. Please keep Michael in your thoughts and prayers, JoAnne

Saturday, June 7, 2008

This week was another no go...

We went to chemo as usual yesterday but Michael was unable to receive his meds again this week. His platelet counts did come up from 21 to 71 but that is still was below the 75 minimum. Also, Dr. Kennedy said his white blood cells were abnormal this week (she never did say if they were up or down). She thinks that Michael has had some sort of viral infection that just hasn't had any symptoms the last couple of weeks. That's good news. A viral infection will go away and is much better than his own body turning on his healthy cells.

Dr. Kennedy did say that if this happens again after the next 4 week maintenance round, they will lower the dose of Carboplatin to see if that is part of the problem. So, now we just wait until next week and hope that his counts straighten out. Dr. Kennedy gave us a script to have Michael's blood checked on Thursday at a local lab before we make the trip to Syracuse on Friday. Please keep Michael in your thoughts and prayers, JoAnne.

Thursday, June 5, 2008

Take me out to the ballgame...

Tonight was Michael's first t-ball practice and he had a great time. Here is a quick recap of the night:

First they split the team into 2 mini-teams and Michael was on the side that got to bat first. Here he is waiting on the bench for his turn.

He swings and knocks the ball off the tee on the first try! Unfortunately, he was the second kid to bat and didn't quite grasp yet that he was supposed to run to first base after hitting the ball. After a little prodding from the coach, he dropped the bat and finally headed for first.

And here he is rounding second and heading for third. (Sorry - this one is a little blurry.)

And a moment in Michael history as he touches home plate to score his first run. (Not that we were keeping score.)

Then it was Michael's turn in the field. He was told to play first base but nobody told him that that meant he was supposed to stay on first base. Everytime someone hit the ball, Michael (and all of the other kids on the field) took off running to catch it.

After a few minutes, it didn't matter though because Michael's hat would have prevented him seeing the ball if it was thrown to him anyway.

That is until the coach helped him out by turning his hat around.

I hope you enjoyed the pictures. Let's hope that Michael's counts will be high enough to receive chemo tomorrow. Please keep Michael in your thoughts and prayers, JoAnne

Wednesday, June 4, 2008

This week has been pretty uneventful (whew!). I am still concerned about Michael's platelet count though. He is still bruising super easy. Tonight he was swinging a small rope around, pretending it was a lasso, when it came back and hit him lightly on the side of the head. Within seconds, there was a nice little bruise. In fact Michael has so many bruises, even he is commenting on them. I called the school nurse on Monday so that she and Michael's teacher, Mrs. Adams, would know that the bruises are an expected side effect and they wouldn't get alarmed (and so they would know we really aren't beating him). My understanding from Dr. Kennedy is that if his counts are still low this week then that's a good indication his immune system has turned on his healthy cells. Keep your fingers crossed that isn't the case.

Michael started playing t-ball last night but they were rained out. They had practice just long enough to hand out uniforms - a color coordinated hat and t-shirt. Michael is on the "red" team so his uniform is red (of course). There are a couple of kids from his pre-k class on his team so Michael was pretty excited. Practice will be on Tuesday and Thursday evenings for 2 weeks and then they will play 4 games in the next 2 weeks. Of course, I will take lots of pictures and try not to bore you with too many.

This morning Michael was asking Jeff and me about what was going on the rest of this week (trying to keep his social calendar straight and all). When he got to Friday, he got a smile on his face and said "that is my treatment day". I was taken back a little and asked him if he liked going to his treatments. To my surprise, he said "yes". He added that he doesn't like "getting needles" but that the rest of his treatment was fun. Now before you think he has gone off the deep end, Michael's attitude is a testament to the wonderful doctors, nurses and staff in the pediatric oncology unit at University Hospital. They care deeply about each of the kids as individuals and it comes across to the kids and their families. I am sorry that we are going through this whole ordeal but I am thankful that we were directed to this wonderful team. Until Friday, please keep Michael in your thoughts and prayers, JoAnne