Friday - June 30th, 2:45p

Okay, well some primal screams from depths formerly unknown, hugs from my dear sister and a shower really help one so exhausted. Steve told me a half hour ago that they will be moving to a private room any minute!!! My goal for the day has been accomplished!! I think I will take a nap now. More later.

Gwendolyn

Friday - June 30th

Maybe sleep puts things in a better light, but I am not nearly as happy about Alex's current state. He has been in a great deal of pain and the only reason he went to the potty (he was carried by Dad) was because the catheter and lack of underwear upset him terribly. Yesterday afternoon, Alex was transferred to a room on the 5th floor. It has another child in it and is excruciatingly small. I stayed with Alex during the night but neither of us got much rest. My goal for the day is to get Alex into a private room. The nurse said he should be in a private room and would be if they were not all filled with chronically ill children. I just can not tolerate my child crying because he is tired and wants the alarms to stop. This situation has made me incredibly upset and frustrated. I just can't believe a boy that has gone through brain surgery is being left to such insufficient care. The nurses are overbooked and I had to ring twice and wait for several minutes while Alex screamed and cried to go to the bathroom. He was pleading "Please, Mom, I need to go potty, get this off me" and I was helpless to do anything. Our nurse was dealing with another child's seizure therefore we had to wait. I am sure you can understand how that makes a tired parent feel. I have called our pediatrician to see if there is anything she can do. I just have to try everything to get Alex in a room where he can rest, otherwise we'll be there forever!

Dr. Foreman, the Neuro-oncologist came in this morning with the pathology results. It is a JPA tumor. We will meet with him next Wednesday and chemo will start once Alex is healed. He hopes it will be by the middle of July. Steve is with Alexander now. I hope to nap, shower and get some things off my list but first and foremost work on getting Alex moved.

Alex either sleeps, watches a dvd or cries. He has not smiled in so long that my heart aches to see his beautiful smile. He drank some apple juice this morning but was sick last night after drinking some root beer. Steve's goal today is to get Alex to walk and/or eat. Please continue your prayers and if anyone has any insight on how to get Alex moved please call!!

Gwendolyn

Thursday June 30th - Midnight

Dear Friends,

I want to thank you all for the love and support you've shown over these last days. Your prayers and positive thoughts carried Gwen and I through this most difficult time.

Alex is doing very well. The surgery went well and the physicians obtained a good sample for the diagnostic. While we await test results, our physicians are 90% confident that IT is the type of tumor they thought it was, treatment involves low dose chemo over the next year, and that his overall prognosis (as I understand it) is good.

Today Alex rested. He's more alert, required less morphine to ease the pain and was able to "go potty" in the bathroom (no catheters for our Alex!). He's taking clear liquids and is eager to "go out to dinner" soon. I'm hopeful that he'll be home on Saturday and we'll be watching fireworks on the 4th!

Mere words cannot even begin to convey how grateful my family is to everyone. I will never forget the kindness, sympathy, encouragement and hope so generously bestowed by everyone and how it sustains us in our time of need.

Thank you!

Wednesday 6:30p

We just spoke to the neurosurgeon, Dr. Handler. He said everything went fine. It is a big tumor with the consistency of a meatball. It has wrapped around the brain stem and has twisted it. From his observation, he thinks it is a jpa tumor and should respond to prolonged low dose chemo treatments. The Pediatric Surgeon is putting in the mediport now and he should be done with in an hour or so. We all have taken a deep breath and thanked God for getting us to this point. God Bless you all.

Gwendolyn

June 28th - 5:00 Update

Hello everyone. Alex was called into surgery early today. There was some concern about his fasting schedule, but they went ahead and had us come in at 12:15p. He got new PJ's, stuffed blue bear, and hair washed. We are all wearing matching bracelets too. Steve had a very hard time signing the waiver forms. Scary stuff!!! Alex went into surgery at 2:15p and we got a call at 3:20 saying the prep was done and everything was well. At 4:20p the nurse called and said Alex is stable, under the microscope and all is going well. Hopefully these reports will continue with good news. I have my sister here and it has been great having her support today. We have also had some visitors this afternoon. It's nice to talk and pass the time. I have brought a bag to stay the night. Mom is with Evan and Zoe at the house. Thanks again for all the support and positive energy and prayers. Keep them coming. We know you are making a difference.

More later, if possible.

Gwendolyn

Wednesday's Post - June 28th

I can't express to you all how much your words lift us up and keep us going. Last night's gathering at Lakeside was just what the doctor ordered. Alex smiled the whole time and loved riding the rides and eating dinner with all his friends. Zoe enjoyed her first amusement park ride and I don't think anyone that saw her face will ever forget the pure joy she expressed. I love watching kids ride the rides at Lakeside, they are always so full of life and the smiles are contagious. I can't thank Susan, Jo-Nell and Karlyn enough for getting this event together. I'm sure others assisted and our appreciation goes out to you as well.

My mother, sister and 5 year old nephew arrived late last night. Steve and I had fallen asleep on the couch watching a movie after a long talk about today. Stephanie and I stayed up for another 30 minutes or so talking. She had some good questions and comments. I was explaining how I have had to go numb and just get through the days. She said we are in "battle mode"; which I believe is a wonderful way to describe how we are getting through this. Does that mean we will have Post Traumatic Stress Disorder? (ha ha)

Dr. Handler, the neurosurgeon, met with us yesterday afternoon. He talked about the risks of surgery and what would happen in each scenario. He also told us that Alexander's brain will be monitored the entire time so they will know immediately if anything has gone wrong. We also found out that a nurse will be in the operating room that will call out to us and let us know what is happening and how Alexander is doing. Everyone is optimistic that Alex will be able to see fireworks Tuesday, even if he is in the hospital, they take the kids to the top of the parking garage and view several shows each 4th.

Alex went to school yesterday and had a great day. His friends had alot of questions for me when I showed up on the playground. Steve and I talked to Alex afterwards. We showed him the picture of his big brain and the "bump" the doctors were going to look very closely at and then fix. He had some questions, "Will there be eye drops?" was one. He did not like Dr. King's eye drops last week. He also said "I don't like bumps!" After we told him he would be in the hospital for a few days and that either mom or dad would be with him the whole time, he continued to play. On the way to hospital, he did ask us "Will I be okay?" Of which, we answered YES!! So that is about all of the conversation we have had about that.

Alex just finished his pancake and root beer breakfast and can not eat for the rest of the day. He can have clear fluids until 11:45 at which time the fasting begins. We will be at pre-op at 1:45p and surgery will begin at 3:45p. Steve is going to wear the "bunny suit" and be with Alex when they put on the gas mask. When they did this Friday, it was very difficult for me since that was the first time Alex was scared and started crying. Just too much for a mom to take.

Ok, well I am going to go play, hug and kiss my boy. Please keep sending us all of the positive energy, love and prayers you can. We need each and every one of you.

God Bless, Gwendolyn

Monday's Post - June 26, 2006

Well so far the day has been quite overwhelming. The appointment this morning provided more details, I have to say they are not encouraging. The big picture presented to us Friday was easier to swallow, but you have to hear it all to be ready for anything. I think the profesionals we are dealing with know how much information can be tolerated at each phase. We met many of the staff of the Oncology department and received reading material and lots of business cards. They also gave us a picture of Alex's MRI and we were encouraged to show it to him and tell him that he has a bump in this head and they need to fix it. Steve and I will probably talk to him tonight. We just received the schedule for tomorrow and Wednesday. Alex will be able to go to school tomorrow morning. We both think this will be good for him. Wednesday starts off with a fast and we have to be at Pre-Op at 1:45p. The surgery will be at 3:45pm. It should last five hours. Most likely we will be staying at the hospital that night.

I just want to thank each of you, especially Susan, Jo-Nell and Karlyn for getting the Lakeside event put together. It will be wonderful to forget our worries and just watch the kids have fun. It is wonderful to have rational thinking persons on our side! Also, thanks to everyone that has offered furnishings for the basement apartment. I will talk everything over with Steve and we will be in touch. This is all happening so fast.

Finally, I just want everyone to know that this looks like the beginning of a long road for our family. Steve and I really have not processed or grasped the full extent of this. The doctor today provided a glimpse of our future, but I believe this is one of those events, you have to live to believe. The whole time the doctors and nurses are talking to you, your inner voice is screaming "SHUT UP, GO AWAY, WAKE ME UP NOW!!!" It truly is overwhelming. The support from you all with your kind words, hopeful thoughts and prayers helps us everytime we read them. I read each and every one, even if I don't respond directly. Overall, we are cautiously optimistic in our logical brains and scared to death at the same time. Wednesday will be the worst day of my life. I can feel it now. We will both do better though once we know what we are dealing with and have an action plan. The biopsy results won't be in for 3-4 days after surgery so hopefully before Alex leaves the hospital we will know for certain the type of tumor he has. My prayer now is that Alex gets to see some fireworks Tuesday. Almost, weekly he talks about wanting to see fireworks again. So that is one of my many prayers at this time.

I hope to see many of you tomorrow. Thank you again.

Gwendolyn

Let's Go to Lakeside!!

Since Alex wants to have dinner with all of his friends, we thought a gathering at Lakeside Amusement Park would be fun. Susan Aldridge and Jo-Nell Herndon have graciously taken on the task of coordinating this event. Lakeside is located at 44th and Sheridan which is also I-70 and Sheridan. Susan's comment says it will start at 6:00pm tomorrow, June 27th. Admission is $2 for anyone over 2 years and they have a lot of kiddie rides for $0.50 each. Bring your cameras because the kids have a blast. There are tables in pavillions around the kiddie area, I'm not sure exactly where we'll set up, but it won't be hard to find us. Lakeside has a website, just google "lakeside amusement park". Thank you all and we look forward to seeing you tomorrow.

Gwendolyn

Sunday's Post- June 25th

Wow, thank you all for the letters of support, hope and good wishes. It is nice to know that you all are out there. I have been thinking about "what we need" and the answer is really for Alex to be whole and to have normalcy in our lives again. I do know Alexander loves to receive mail so if anyone wanted to send him pictures or letters or anything else, please feel free. We will deliver anything we receive during the hospital stay to him immediately.

Also, I have a request for all of the parents of Alex's friends. We are hoping that Tuesday's appointment with Dr. Handler will be in the afternoon and that Alex can go to school that morning. So if possible please ask the kids (if you even told them) to not upset Alex if they see him Tuesday. Alex is still the same fun-loving, smiling boy he has always been and we do not want him scared or worried. Steve told him he was going out to town 10 days before this last trip and Alex worried and asked about it every one of those 10 days. Also, just know that if you call or see us in person, we ask that great sensitivity for Alex's ears be taken. We have tried very hard to have our phone conversations out of his earshot. So just act as normal as possible at least until after Wednesday. It won't do Alex or any of us any good if everyone is crying around him. I was crying in the car Friday on our way home from the hospital and Alex asked "Mommie are you sad? Mommie, why are you sad?" I told him it was because Daddy's flight was delayed and we were not going to be able to see him before bedtime. I hate lying but feel it is appropriate at this time. I am really just winging it here.

Finally, if anyone can think of a place where we can have a "party" Tuesday night, Alex has asked to have dinner with all his friends! I think this is a wonderful idea and would love to see everyone. So if you read this and can think of a place we can gather maybe a park or something very kid friendly; order some pizzas; and just hang out and watch the kids be kids that would be wonderful.

Okay, well sleep is not very plentiful these days and Steve and I are both pretty stressed out but we are working together to make each day as good as possible. Tomorrow we meet the Neuro-oncologist, Dr. Foreman and Alex has a physical from what I understand. Steve will get to ask his questions and see the MRI images for himself. These are hard to see because as the doctor said "these tumors are usually quite large". It really made me angry to see such an ugly thing in my baby boy's head.

Alex had a headache this morning and I nearly panicked. The doctor gave us some "emergency medicine" in case he starts having trouble breathing, swallowing or speaking. That really puts a parent on alert! But two minutes later he said his head was okay.

Well, I guess that is it. I need to get back to being Momma. Love you all, big hugs too. I hope to see you Tuesday evening. Thank you all again.

Gwendolyn

Here's the scoop

This all started two weeks ago, when we went to have Alexander's gait evaluated. We had noticed that Alexander was not using his right arm much and that his right toe would drag every once in a while. Dr. Sink at Children's told us that there was something definitely going on and that he suspected one of three causes: vision, brain tumor or mild cerebral palsy known as monoplegia. He ordered an MRI and was glad that we already had an eye appointment set for Alex. Last Tuesday, Alex had an eye appointment and they found that his right eye is twisted. We took this as good news thinking that it explained alot of Alex's presenting issues such as head tilt, constant balancing, etc.

Yesterday, we had the MRI. They found a brain tumor at the base of Alexander's skull around his brain stem. They think it is a juvenile pilocytic astrocytoma which responds well to low dose chemotherapy over a prolonged period of time. The tumor is the shape and size of a man's thumb. Alex will have brain surgery Wednesday afternoon so they can get a sample of the tumor and verify their diagnosis. If they are correct and the five hour surgery goes well Alex will be hospitalized for 3-4 days and then will have chemotherapy once a week for a year.

The tumor explains all of Alexander's symptoms - head tilt, twisted eye, mild facial weakness that causes drooling, hoarse voice, consistent throat clearing, droopy eye, and the weakness on the right side. Depending on which doctor you talk to, these symptoms may improve after chemo or may not. The surgery is not meant to remove the tumor because it is too close to the brain stem which is vital for life. Alex will not have to have his head shaved and the chemo should not cause nausea or hair loss.

Steve was on a business trip last week and learned about the tumor in a Boston airport yesterday. We are both reeling from the news and have not quite grasped it all. Our pediatrician, Dr. Jody Mathie has assured us that Alexander's Neuro-Oncologist, Dr. Foreman and our Neurosurgeon, Dr. Handler, are the best available. Our prayers at this time are that their diagnosis is correct and that the surgery and chemo treatments go well. The dangers of surgery include infection, neurological damage and hydrocephalis. Alex will be in a great deal of pain after the surgery because they are moving the muscle that connects the head to the neck.

Our goal now is to maintain normalcy for Alexander and Zoe. Alex has doctors' appointments Monday, Tuesday and then the surgery on Wednesday. We will be in the hospital for the rest of the week. Please use this blog to post your comments, we just can't be on the phone talking about this with everyone. I hope you understand. I think I will postpone doing all the household chores I have today and sit, snuggle, play, read, love my children and pray every chance I get. This is absolutely the hardest thing I have ever faced.

Steve will be working from home next week and I don't know what I'll do about work yet. My mother and sister plan to be here Tuesday night. Alex will not be in school next week either.

Please pray for our beautiful little boy. He is such a wonderful child and I have always said I am blessed to be his mom. Pray, just pray for his wholeness, perfection, health and future. Thank you. God bless.

Gwendolyn