Hair today ... Gone tomorrow

It is hard to look at Andrew and ever believe that he has had such a bad week leading up to today. Last night he woke up and for the first time asked for food .... I only gave him Saltine crackers but it was the first sign that the real Andrew was finally coming back to life. He woke up this morning and asked for food.... real food, something with real taste. Then he asked for eggs ... we compromised and he had dry toast, Cherrios and hot tea.
Andrew also spent some time at the hospital today getting a 2 hour Saline infusion to help flush his kidneys of the chemo and get him back on his feet faster. I also gave him a shot of Neulasta last night which will help to increase his white blood cell counts and keep him healthier in the weeks to come.
Andrew continued his eating streak at the hospital and ate a container of soup and then came home and had 2 turkey sandwiches and another container of soup. And for dinner he ate a piece of baked chicken and pasta and he finished his dinner off with a bowl of sherbert. That may not seem like much, but to us its a huge breakthrough. This is the first day that Andrew has kept anything of substance in his tummy since Monday at dinner...... and by the way its Friday. What he really wants to eat right now is a quarter pounder with cheese from McDonald's but he will have to settle with a homemade burger for now ... no fried or fatty food.
He also decided to cut his hair tonight and beat the chemo to it. As you can see from the pictures he looks absolutely adorable with short hair.
Life as we know it is starting to come back to a new normal and I'm very thankful for that. Remember to keep Andrew in your thoughts.

Farewell........

Out like a light

Tuesday was a very uneventful day for Andrew. Due to the Ativan that he was given for his nausea, he actually never really woke up yesterday, except for to use the restroom a few times. So as you can imagine, his nausea was kept under control but he was completely "out like a light" all day long.
Dr. Felice said that Andrew may need to be injected with Ativan when he comes in for treatment and that we will just have to deal with the fact that he will sleep through the 3 day treatment. The only real downside is that he hasn't eaten anything since Monday at dinner. He has only had a few glasses of water when he was awake.
On the upside, it does make him a very easy patient to take care of. Today is Wednesday and hopefully we will be going home today as long as his counts are fine. He has an MRI this afternoon and its parent-swap day as well. Gwen and Steve will be here this afternoon and after a group dinner together at our house, my parnets will leave and Andrew's parents will stay the weekend to help out.

Lights out .......

Just A Spoonful of Sugar .......

So lady and gentleman the wait is finally over. Andrew began his long and tiring chemo treatment on Monday at Reston Hospital under the care of Johns Hopkins. He checked into the hospital at 7:30 am and after a battery of questions he began his 2 hour long saline drip. Saline helps the chemo not to burn the veins when it enters. Around 12 noon the first 2 actually drugs were hung to help protect Andrew's kidney's. They are called recovery drugs. The chemo is so potent that recovery drugs are necessary every few hours to protect his vital organs, especially his kidney's, from failure. Finally around 2 pm, the real stuff was hung. The drip will hang for 48 hours and be infused into his mediport in 20 ml. increments. That's about 1 1/2 teaspoons an hour. That tells you the strength of the drugs. The other 2 drugs that complete this combo were given in shot form into one of the splits in his port.
The nurses here at Reston are great. Andrew has a private room and bathroom/shower area which is great. His also has 2 huge windows that allow lots of Virginia sun to shine in on him. In general, Monday was a pretty uneventful day. He only needed one shot of anti-nausea medicine and a few extra pain pills. They are keeping the pain under control for him. His only real complaint was that one of the chemo drugs makes him hot but we are able to control that with a wash cloth and ice and his also gets uncontrollable hiccups -- which in my opinion are so funny. He of course, does not find them as funny. But with a cup full of warm water and a spoonful of sugar, the nurses have been able to keep them under, some, control.
Though I did not spend the night in the hospital with him so that he could get some sleep, I've learned from the nurses on staff that he had a little bit of a rough night. He couldn't sleep and felt sick most of the night. They were able to help with another anti-nausea shot but he still didn't sleep that much.
At some point this morning he did fall back to sleep and is currently in a deep slumber right now, which I am thankful for. At about 10 am they will hang another recovery drug for 30 minutes and Dr. Felice, his oncologist, is back from vacation today and will be at the hospital to see him.
Linda and Pete will also be making an appearance at some point around lunch. Mom has been great and has done all of our laundry, played with the dog and is even cleaning the house today. Dad mowed the grass which took him all of 3 minutes (since our lawn is the size of a postage stamp). He proceeded to then cut parts of the common area and continuously asks what he is to do with the rest of the day now that he has killed all of 5 minutes total. He jokes that it takes longer to put gas in the mower than it does to actually do the cutting -- we can't all live on 8 acres Big Man!!!
But Andrew is doing well. Chemo is tuff on everyone but with lots of family help and a few laughs along the way --- will help the medicine go down!!!

UPDATE THIS AFTERNOON
Dr. Felice has helped Andrew out and come to the rescue. Andrew is now getting a shot of Adivan every 6 hours to help with nausea. The side effect is that all he does is sleep now. The doctor said sleep is better than anything for him, so currently he and my dad (who is in the recliner) and taking a long siesta.

In the City of Blinding Lights

Yesterday, Andrew and I (and his parents) traveled to Memorial- Sloan Kettering Hospital in New York City to meet 2 doctors for a second opinion of Andrew's diagnosis and treatment. Dr. Carol Morris, Orthopedic Oncologist and Dr. Lenni Wexler, Peds Oncologist were both very helpful in, again, walking us though the treatment process and Andrew's diagnosis. Since Andrew's case is so rare, there are only about 300 cases per year of Ewing's and far less of those are adults, you can image that everyone wants to have him under their care. Some Sarcoma doctors may go there entire career and never run across an adult case that they get to treat. With that said, we feel comfortable with the decision that Dr. Thornton has made at Johns Hopkins and he will be continuing his treatment under her care.
Andrew will begin his 3 day hospital stay on Monday June 29th in Reston Hospital in Virginia under the daily care of Dr. Felice and the overall care of Dr. Thornton at Johns Hopkins. The option of surgery and/or radiation or a combo of the two, will be discussed and revisited around weeks 9-12 of his treatment. A decision will be made then about how to proceed.
As you can imagine we are all very exhausted and hope to take the weekend to sleep and get ready for the long week ahead. Linda and Pete (my parents) will be coming to stay with us from Sunday to Wednesday of next week and then Andrew's parents, Gwen and Steve, will be with us from Wednesday through the weekend. We are very lucky to have supportive parents, who just happen to be teachers and have the summer off (or in my dad's case have every day as Sunday -- Mr. Retired), who are able to help out.
We really appreciate all of our friends who have also offered to help in any way needed. We promise to take you up on your dinner offers and movie nights once we get this treatment started and can better predict Andrew's schedule.

But for now, I bid you adieu ......

WE ARE.......

I guess if Andrew has to have cancer, I'm glad that he has Johns Hopkins as a hospital and Dr. Katherine Thornton on his side. Dr. Thornton is young, outgoing and optimistic that with a lot of hard work will be able to beat Andrew's cancer.
Since Dr. Thornton is located in Baltimore and we live in Northern Virginia, she and our oncologist in Reston, Dr. Felice, have decided to work together so that Andrew does not have to travel to Baltimore every time he needs treatment. That is more of a relief than I can ever express especially after making the drive yesterday. I felt like cancer was going to be the easy part of situation -- the driving was going to be the scary part. (HAHA, I'm a bad driver, I know. I learned my driving skills from my mother!!!)
Andrew will begin chemo treatment some time next week (probably Thursday) after he gets an EKG, Chest CT and full spinal MRI. They are the last tests that need to be done so that treatment may begin.
His treatment will be broken up into a few section by both the Chemo treatments itself and the surgery that will interrupt in the middle. In total with the Chemo-Surgery-Chemo regiment, it will take about 49 weeks to complete. If anyone's counting that's about one year from now, or right around Andrew's 30th birthday!!!
The treatment will go as follows:
3 days in the hospital receiving the chemo regiment: vincristine (Oncovin®), dactinomycin (Actinomycin D®), cyclophosphamide (Cytoxan®), and doxorubicin (Adriamycin®).
then 21 days off
then a 5 day regiment (Monday - Friday) of outpatient (about 2-4 hours a day) of : ifosfamide (Ifex®) and etoposide (VePesid®, VP-16)
then 21 days off
and complete the cycle again.
After 4 full chemo cycles or 12 weeks -- Andrew will have surgery to remove the leftover tumor and any infected bone.
No chemo during recovery but soon after he will begin the regiment again
3 days in the hospital
21 days off
5 days outpatient
21 days off
3 days in the hospital
21 days off
and then for the rest of the time
every 21 days he will have the 5 day treatment until complete.

When he is finished and given a clean bill of health, which I know he will, he will only need to have scans 4 times a year for 2 years and then bi-yearly after that until the 5 year mark to make sure he's clear. Dr. Thornton is optimistic that we can beat this cancer and that Andrew and I can live a very normal life -- if you call our life normal!!!

Of course now that I've told you all of the good news, here's the catch: with the extremely high level of chemo Andrew will be receiving, he will be more susceptible to catching diseases that his body would usually be able to fight off. With that said, we appreciate all of the support and offers for visits but we will need to limit them and ask everyone to not be around Andrew or myself if you have come in contact with other people who may even have even just the common cold. We will also be vigilante's with hand washing and sanitizer when you enter any house we are in and are around us.

Andrew and I feel very lucky to have caught this disease in an early stage and are committed to winning the battle. I have recently found myself saying that Andrew is "Surviving Cancer" and not just "beating" it. The more positive the better.

Thank you all for all of your love and support .....

WE ARE ...... SURVIVING CANCER!!!!!!

Medi Port Today

So I have to admit, Andrew was a model patient today. He had a single Medi-port inserted under his right collar bone. The port will allow him to more easily receive Chemo when the time is right. The procedure itself only took about an hour. He came trough it with flying colors and even a smile on his face. He is only now experiencing a minor amount of pain and discomfort where the port was inserted. This pain is usual and will subside over the next few days. He will be able to resume regular activity in about 7 days -- you know, installing tile floors, mowing the lawn, moving furniture .. etc. etc.....
Tomorrow is the big day. The day we go to Johns Hopkins to talk to Dr. Thornton about Andrew's treatment options and when he will begin the regiment.
Cross your fingers and send good thoughts our way.

(picture is of Andrew before procedure)

Good-nite and Good Luck...........

Many Thank you's

Andrew and I are completely overwhelmed with the love and support we (and our families) have received over the past few days. We are also very grateful for all of the prayers that were said today in all of the Uniontown, PA churches in honor of Andrew. We know that all of you stand strong behind us as we go through this difficult time in our lives.
Tomorrow Andrew will be having the Cath-port inserted into his chest so that he is ready for treatment when it begins. Wish us luck because all of you who know Andrew are well aware that he is a terrible and dare I say, demanding patient. A day in the hospital with Andrew can seem more like a root canal without Novocaine. (Humor really is the best medicine.)
But in all seriousness, keep all of the love and support coming.

All our love,
Amy and Andrew (and Winston)