Week 2- May 31/June 6
May 31st 8:30 pm No call yet from the Dr. about the biopsy.  Chris thinks that they might call in the morning and want us to come in as soon as we can.  That's kind of how it went with the other appointments.  If not, I guess we are looking more at Thursday.  Michael has had a bit more energy today although still laying down a lot.  His school told everyone about him at a pep ralley today.  He is learning how many people that he has caring about him.  He really has had a lot of people signing the guest book on this site.  He reads and re-reads them.  Thank you very much for taking the time to sign it.   Michael has had many friends over today, which has been good for him.  His school's senior awards night is coming soon.  His vice-principal told me they want to dedicate the ceremony to Michael.  That is so nice of them.  We are hoping he can make it to graduation.  It would be so good for him!
June 1st 9 am The day started off fast as we suspected it would with a call from Dr. Pan saying that the results weren't on his desk as of yet, but to come into the hospital for blood tests and do the admissions process.   By that time, he felt he would have the results.   12:30 pm...We were in the car ready to head to the hospital when Dr. Pan called and said that we didn't need to come in to the hospital yet.  He got the results back and there was a problem.  Testicular cancer has two forms.  The results didn't show either type of cancer.  He was very concerned that the markers in Michael's blood weren't high as is consistant with testicular cancer.  He believes that the markers being normal and the pathology report being negative for those two types of cancer means that Michael may have a more serious type of cancer.  The only way to tell is to send the biopsy samples to San Francisco for some process called staining.  Michael is scared now a little more than before.  We don't know exactly what this means as far as treatments go or the success of the treatments.  Dr. Pan said he would have the results hopefully by Friday.  When he gets the results, then he will decide again how to proceed...whether it be chemo or surgery. Michael had the most energy today of all days this week and wanted to go to Target to buy a PSP game for his hospital stay.  Taylor has been begging for one.  I asked Michael if he told Taylor he was going to get one...he said "no way!"  We'll have to go back and get another one.  They have a limit of one per person...crazy...They can play against each other if Taylor gets his...that way while he is in the hospital, Taylor can spend time with him playing games.   We spent about 20 minutes in the store and he was wiped out...he's laying down in bed again resting right now.   There was a group of men at The Pancake House this morning.  They are there every Wednesday morning when Nathan and I go to have breakfast.  I noticed they were praying there this morning and asked them to pray for Michael.  They prayed with me right there. 9:00 pm  I can't remember who I have told this to and who I have not, so thought I would put it there.  Rachel, Chris' daughter, was pregnant and due in September with a baby girl.  Two weeks ago, she lost the baby.  Chris just got off the phone with her.  She's been back in the hospital because one of her tubes was infected.  They were trying to treat it with antibiotics, but yesterday had to remove it.  They told her she could still get pregnant, but would have a harder time.  She is out of the hospital today.  Chris told her about Michael tonight.  We were trying to give her a little time to feel better.   Our friends Joanna and Jerry have offered to take Nathan after school.  They have a pool and their son Justin is Nathan's best friend.  They shared their dinner with us tonight.  We really appreciate their help.  It's good for Nate to be with friends.  The pool helps too!   June 2 3:00 pm The Dr. just called and said that what Michael has is a cancer called Sarcoma.  There are many kinds, but we are pretty sure this is the exact kind.  I found this description on a website and copied to here. What is Sarcoma? Sarcoma is a general class of uncommon cancers in which the cancer cells arise from or resemble normal cells in the body known as "connective tissues".  Normal "connective tissues" include fat, muscle, blood vessels, deep skin tissues, nerves, bones, and cartilage. Cancers of cells which resemble any of these normal tissues are known as "sarcomas".  Sarcomas are sub-classified based upon the specific type of cell that makes up the cancer.   The testicular cancer is a secondary tumor that was caused by the sarcoma.  Sarcoma is the reason Michael is having all of the back pain.   Michael will be starting chemo on Friday.  They said it will be a 3 day hospital stay now.   8:15 pm  We've been reading a lot on the internet and I found this article from the Mayo Clinic.  This talks about bone sarcoma, which we don't believe that Michael has.  We believe he has soft tissue sarcoma. Sarcoma As with other cancers, treatment for sarcomas depends on the size, type, location and stage of the cancer, including whether it has spread to the lymph nodes or other parts of your body. Surgery Surgery is the most common treatment for soft tissue and bone sarcomas. For both, surgery for cancer that hasn't spread may involve removing the cancer and some of the healthy tissue surrounding it. In the past, amputation was common for bone sarcomas and soft tissue sarcomas in an arm or leg. Today, advances in surgical techniques and chemotherapy before surgery (neoadjuvant chemotherapy) or after surgery (adjuvant chemotherapy) and radiation therapy make limb- sparing surgery possible in many cases. However, amputation may be necessary to remove all the cancer from soft tissue sarcoma in an arm or leg that has invaded nerves, arteries or muscles. With osteosarcoma, limb-sparing surgery involves replacing the cancerous bone with an artificial device (prosthesis) or bone from another part of your body or from another person (transplant). If osteosarcoma spreads, it often goes to the lungs. Treatment may involve surgical removal. Ewing's sarcoma has a tendency to metastasize rapidly. Treatment may involve chemotherapy with multiple drugs as well as radiation therapy and surgery to remove the primary tumor. Radiation therapy Radiation therapy — also called radiotherapy or X-ray therapy — involves treating cancer with beams of high-energy particles, or waves (radiation), such as gamma rays or X-rays. Although radiation can affect healthy cells as well as cancer cells, it's much more harmful to cancer cells because cancer cells divide more rapidly than healthy cells do. Cells are more vulnerable to damage when they're dividing, making cancer cells more susceptible to radiation than normal cells are. In addition, normal cells can recover from the effects of radiation more easily than cancer cells can. More than half of people with cancer undergo some type of radiation therapy. Your doctor may suggest using radiation therapy at different times during your cancer treatment and for different reasons, such as before surgery to shrink a cancerous tumor or after surgery to stop the growth of any remaining cancer cells. In addition, doctors sometimes use radiation therapy to shrink tumors to decrease the pressure, pain or other symptoms they may cause. Chemotherapy Chemotherapy uses medications to kill rapidly dividing cells. These cells include cancer cells, which continuously divide to form more cells, and healthy cells that divide quickly, such as those in your bone marrow, gastrointestinal tract, reproductive system and hair follicles. Healthy cells usually recover shortly after chemotherapy is complete — so, for example, your hair starts growing again. Unlike radiation therapy, which treats only the part of your body exposed to the radiation, chemotherapy's main advantage is that it treats your entire body. As a result, it treats cells that may have escaped from where the cancer originated. Depending on the type of cancer you have and whether it has spread, your doctor may use chemotherapy to: Eliminate all cancer cells in your body, even when cancer is widespread Prolong your life by controlling cancer growth and spread Relieve symptoms and enhance your quality of life In some cases, chemotherapy may be the only treatment you need. More often, doctors use it in conjunction with other treatments, such as surgery or radiation, to improve results. In addition to chemotherapy, some drugs inhibit certain enzymes that are critical to the development and growth of a tumor. One of these new drugs, imatinib (Gleevec), is used to treat a type of sarcoma called gastrointestinal stromal tumor, as well as chronic myelogenous leukemia. June 3 7:15 pm I am home for only a few minutes to drop off Taylor and grab some things for myself so that I can stay the night with Michael at the hospital.   Chris is going to come home and then we will trade for awhile tomorrow.  Dr. Pan confirmed our worst fears today by saying that the sarcoma Michael has is one of the worst cancers that he could have.  He said that they are trying the chemo to shrink the tumors and give Michael some relief.  If he doesn't have any bad reactions to the chemo, they will teach Chris to do it so that it can be administered at home.  We need to pray that the chemo works on the tumors and stops their growth and begins to shrink the tumors.  Michael has a long, hard road ahead of him and needs every single one of us to pray for him and have no bad or negative thoughts.  We can't say "sorry Michael" or "I'm so worried Michael".  We have to have laughter, prayers, good thoughts and wishes.  We have to be strong so that Michael can be strong! The hardest part today so far was putting in a pick line.  I don't know if I am spelling that correctly or not, but it is a hollow tube that feeds from his arm up to the area above his heart.  Michael did so good while the nurse put it in.  I was very proud of him.  He gave me a thumbs up when it was done. He is starting the chemo right about now.  He wanted to make sure someone stayed with him during the night cause he was a little nervous.  So Chris is there now and I will go back and trade places in a little bit here.  Visiting hours are from 10 am to 8 pm.  He can get calls on his phone until 8:30 pm.  Here is the phone numbers and directions:  Michael is in room 759.  If he is sleeping, he will turn off the phone so don't worry about bothering him. Kaiser Permanente Santa Clara Medical Center & Hospital 900 Kiely Blvd. , Santa Clara, CA 95051 Phone Number:  (408) 236-4710 Directions: Located between Benton Street and Homestead Road From I-280:  Exit north on Lawrence Expressway. Turn right onto Homestead Road, then left onto Kiely Boulevard, then left onto Kaiser Drive. June 4th. 3:00 pm  Michael is having a little discomfort in the form of a burning sensation in the testicle tumor.  He is able to be relieved with Vicadin though.  I think he likes that drug.  I stayed the night last night.  Michael and I both didn't get to go to sleep until 4 am.  I got up at 7 when they came to draw blood, but he slept in until about 10:00 am and then started getting visitors.  He was up eating lunch when I left.  So far so good...thank God.  I came home to shower and sleep for awhile and am going back later tonight.  Chris is there with him now.   June 5 2:15 pm  I have just gotten home from the hospital.  Michael had a rough night.  He's feeling the side effects of the chemo.  He's been sick, but the medicine they give for that helps.  The burning sensations are worse, so now he is taking two vicadin and morphine.  He didn't get to sleep until about 5 am and was sleeping until about 11 am.  He tried to eat and got sick.  When I left, he had just taken the pain medication again and was falling asleep.  The last iv of chemo starts tonight.  He's had a couple of visitors today and was able to wake up and talk a bit.   The exact type of cancer Michael has is called Leiomyosarcoma.  I have put some information on a separate page June 6 11:15 am Michael had a horrible night last night.  He was restless, sick and stopped taking simple commands, like wait for me to get the iv stand unplugged before you go to the bathroom.  He also wouldn't pee in the urinal and twice lost it all across the floor.  He wouldn't talk to me or the nurses or even his Dr.  He started doing this thing with his lip that looks like he is snarling at you. He wouldn't even open his eyes for any of us.    When Chris got there, he was very strong with Michael and he started responding to Chris and later the nurse a little bit.  He ate some grapes and cantalope with is the first major things he's eaten since last Friday.   The Dr. ordered an MRI though today to see if one of the chemo medicines has altered his brain function.  That is one of the rare side effects of one of the two drugs he is taking.  The Dr. can't explain the snarl look and Michael told Chris he can't control it.  The attitude difference could be from all the pain meds, but Dr. Pan thinks it's more likely a side effect of that one chemo med.  Yesterday, he was normal but tired and visited with friends, family and one of his teachers.  The MRI will let us know that today.  I was up with him since 9:00 last night, so I am home to sleep a bit now.  If I get any news before I go back to the hospital, I will post it today....otherwise, I won't post again until I come home to sleep tomorrow.  He was scheduled to come home Tuesday, but right now, I don't see that happening.  He hasn't had enough nutrition, and with the not responding to us, they will keep him in there I am sure.   4:45 pm  Chris and Michael just got back from the MRI.  Michael is responding better to commands, but is having trouble keeping his eyes open and the top lip is still "snarling".  Chris wouldn't let them finish the last of the chemo (that should have ended around 8 tonight) and when he told Michael, Mike started to cry.  Chris said he was sobbing.  Chris asked him if he was upset and he said he was happy.  We talked about it and are going to find out if there isn't a different way to approach this as we both think it would be better for him to  have a quality of life and be able to interact with us, instead of a quantity of life where he can't communicate with us.  Chris said he understands everything being said in the room around him.  He understands the conversations going on with the Dr.s.  He has been eating some grapes and fruit today and wants some mashed potatoes.  I am going to make some to take back with me tonight.  I hope he has a more restful night.  He really wants to go home tomorrow.  He misunderstood Chris, and thought he was going home tonight.  When he figured it out, he started crying again.  Chris promised him he could come home tomorrow.