Wednesday, August 30th

Home sweet home. Well we had a pretty good trip. The kids did fine on the airplane and they both loved being around their family, especially cousin Evan! My aunt Jennie and Grandfather came by for a visit Sunday. Jennie and I started talking and long story short-we bought her car. The deal was great and we know that she takes excellent care of her cars. So I drove home yesterday with two kids through Kansas. The kids were great. Zoe did not want to get back in the car seat at the last fill up, but we all made it home safe and sound.

A second car is going to make life so much easier for us. Steve no longer has to spend 3 hours on the bus each day and can spend a lot more time with the kids, who miss him. I won't have to drive to pick him up when and if he works late as well. I am so grateful this all worked out.

Alex did very well. He only got cranky late Saturday afternoon which could have been due to the lack of nap. Zoe was a hit with everyone. They all loved seeing her fiesty personality.

Unfortunately, Alex did miss his first two days of school. I kept him home today just to get some rest since we did not go to bed until 11:30 PM CST. He'll start next Tuesday and hopefully a routine will get established soon. I am spending the day getting the house in order for a visit from Steve's parents. They recently moved to Yelm, Washington and decided to drive to Colorado for a visit. It will be nice to have the guest apartment downstairs for them.

Okay, well I have to get going. Wish us luck tomorrow at the chemo appointment. I have a lot of questions for the doctors, but generally, I would say Alex is improving. I just see that we have a long road ahead of us.

Take care and God bless.
G

Thursday, August 24th

I am going to try to keep this short and sweet. Alex's chemo started off with alot of anxiety and crying on Alex's part, but once the "butterfly" was in the mediport he turned it around and enjoyed playing video games. Alex weighed in at 16.3kg!!!! I'm so happy about that, I could scream. Since his head tilt is pretty much gone and other positive signs, the MRI has been put off until its regulary scheduled time at the end of 12 weeks of chemo. Today was seven.

Zoe came with us today and did pretty well. She got sleepy at the end and even though we had our own room, was not able to rest until she got in the car. Alex still coughs during the night but the audible breathing has not reappeared. So thank you all for your prayers. Once again, it has worked out. Whew!!

I would like to take this opportunity to respond to some of the comments, since I have not learned how to do so individually. First of all, Joe M. where are you? Are you okay? Please let me know, I am worried about you. Next, Shantall, thank you for your comments, you always have such encouraging and supportive words. I hope we can meet someday. Finally, Tracie, I'm still waiting for that call, Grandma!!

Okay, I have a thousand things to do before we fly out tomorrow morning. Love to you all.

God bless!
G

Tuesday, August 22nd

I tried to update the post this morning the system was down. Last night was absolutely horrible. Alex was sleeping between us, when his breathing woke me up at 2:30 AM. His breathing was audible, gurgling or purring almost and he was coughing alot. I listened for quite a while then woke Steve. He had me turn on the light to look at his color. We then had to make a decision whether it was weird congestion or fluid in his lungs. After an eternity, we decided that since he was not straining to breathe and his color was good, that we would wait until morning. Needless to say, it was nearly impossible to sleep after that. Steve had work to do so he got up and went to the computer. I listened to Alex's breath, prayed and eventually fell asleep.

This morning Alex's breathing was just fine. He was still coughing off and on but his mood was great and he ate all of his breakfast. I started feeling better, until I called the oncology department. The nurses took my report to Dr. Foreman who ordered an MRI. I bargained and got a reprieve for two weeks (hopefully). The doctor said that since there has been a cumulation of symptoms indicating the tumor is getting worse, they need to find out if it is responding to the chemo treatments. I really can not explain the fear this statement put in me. What does that mean? The tumor is not responding? They promised us it would respond and that Alex would get better! Does this mean more chemo? I know surgery is not an option, so where does that leave us?

I had to reign in my fears and anxiety and just focus on the day. Alex had physical therapy this afternoon and showed some improvement in his endurance. I took that as a positive. I also took relief in the fact that Alex made a concerted effort to get to the goody bag today. He ate his breakfast, drank his milk and had one of two glasses of water down before noon. As we were driving to pick up Steve, Alex suggested some new tasks for the next reward chart. He thinks we should have drinking all of his milkshake, being quiet and sleeping in his bed should be sticker worthy activities. This really made me laugh and we may just have to accommodate his request next week! I am happy to report that Alex finally got 5 stickers in one day and was able to get a goody this evening. He was very excited! I am very proud of him for not giving up. He had had four stickers each for Sunday and Monday and was very sad last night. I just adore this kid!

Anyway, the day has been long and very tiring. The whole family took a nap this afternoon and we are still exhausted. My prayer tonight is that Alex sleeps quietly and peacefully with no audible breathing and that I do not have to call the oncology department tomorrow.

Good night and God bless.
G

Monday, August 21st

Happy Monday, if there is such a thing. We had a pretty good weekend. Alex's cranky day moved from Sunday to Saturday this week. Luckily it was a cloudy, rainy day Saturday and we really did not mind. Yesterday, we took the kids to the zoo and enjoyed the beautiful weather. Alex had an episode at Tropical Discovery, but otherwise it went pretty well. We spent three hours there and were ready to come home. Zoe took a good long nap and Alex just laid down but was in a better mood afterwards, which is really the whole point of naps.

So in an attempt to get Alex to eat, we reworked his reward chart. This week's rewards include: eat all of a meal; drink one glass of milk; drink two glasses of water; play outside; brush teeth and nap. If he gets five of these done in a day then he gets to go to the "Goody Bag" which was recently restocked with all kinds of fun stuff. After twenty reward stickers Alex will get a SpongeBob camera and after thirty stickers a trip to Lakeside (before they close for the season). So far Alex has eaten two meals. I'm very hopeful this will do the trick.

The doctor and I think Alex has probably lost his sense of taste on the right side. I asked about his ability to smell and was informed that smell is the only sense that does not travel through the brain stem. It has a direct link! Fascinating!

Ok, well this will be my first week as "stay home mom with two kids"! I am trying to plan activities for our free time. Alex has three appointments this week (so far) and I need to get into the office tomorrow.

We love your comments. Hope everyone has a wonderful week.

God bless.
G

Thursday, August 17th

Hi all. Well today went pretty well. We left the house at 7:45 AM and dropped off Zoe at a former classmate's home. Then Alex and I went to the hospital to get his chemo. Dr. Foreman came in first to talk to us and exam Alex. He said doing an MRI at this time is a bad idea, because generally things look worse and everyone is invited to get upset. He said Alex's aspirating on solids is not really an issue as long as he is successful at keeping fluids and solids out of his lungs. So to determine that, he ordered a chest X-ray.

Dr. Foreman also mentioned that Alex's weight loss is normal as well at this stage of the game. Alex has gone from 17.2 kg to 15.8 kg. Last week he was 16.2 kg and I really thought we'd see a weight gain or at least maintaince. I was very surpised that Alex had lost even more weight. They said there is a point that they'll take action (g tube) but did not tell me what that point is and I did not ask. So instead of asking Alex to eat the Pork Carnitas I whipped up from my dream dinners last night; I made his SpongeBob Super Mac and Cheese as he requested. He ate 2 servings as well as his grapes and broccoli. Dr. Foreman also recommended that we meet with a dietician next week during the infusion. I'll be interested to see what he/she says about this situation.

Okay, so off to radiology we go because there was enough time before his vincristine order was ready. Upon our arrival, I am told it will be "a few minutes" to get the insurance pre-authorization. So we sit and wait. An hour later it's 10:15 and Alex still does not have his infusion done and he needs to be at the charity event at 11. I decide to head back upstairs to the infusion room. We get Alex's infusion done in 10 minutes and are done with Oncology for the day!

At the race track, Alex was very uncooperative and ready to go home. I even called Steve to see if he could get Alex out of his funk, but Alex would not even speak to his father. So I diverted! Alex was soon operating a remote of a toy car another little boy had brought. So for the next 30 minutes, Alex played and then watched the big boys play. At race time, he was smiling and much more cooperative. Our team was from 105.5 Jack radio. They were all very nice and supportive of Alex's driving. Needless to say, we did not win, but did have a wicked crash!

After the race, we had to wait for Alex's surprise. I got him some lunch and once his blood sugar rose a bit, Happy Alex showed up. It was great, he was smiling and talking to everyone and cracking himself up. We even made a new friend of the morning DJ! She loves dream dinners too, so we are going to try to meet up there again soon.

So after the race, Alex was given the race car. It is very nice and very fast. Alex is so excited. He carried the remote around for the rest of the day. When we got to radiology, everything was in order and we were done with his X-ray in no time. Then we went and had Alex's face painted. Alex picked out a bat design and felt like a super hero afterwards.

Needless to say, we were very tired when we picked up Zoe. Both kids fell asleep in the car but were wide awake when we got home. Zoe really needed some mommy time and would not let me put her down for quite a while.

I can't tell you how great it was to hear that Alex did not need a MRI at this time. I felt validated and a great deal of relief. I'm learning to listen to my instinct more these days and it pays off every time I do. There is just so much noise sometimes that I can't hear it. Dr. Foreman is going to try to get Alex's speech therapy done at his school and I have rearranged his OT appointments to proceed infusion on Thursday. So in two weeks we may be down to two trips to the hospital a week instead of four!!!

Well, I still need to go to the store for milk and an anniversary card. Steve and I will celebrate our fifth wedding anniversary tomorrow! Neither of us can believe it has only been five years. So much has happened in our lives. Does anyone remember the Christmas letter? Remember how we just wanted a boring year? Well, this is anything but boring!!

If anyone wants a playdate let me know. I know the kids would love to see their friends! Love to you all!

God bless!
G

PS-Tracie how did this happen? How is it you are a grandmother? I'm having a hard time with this one!! I still think of us as the girls up to no good!! Call me if you can! Love you!

Wednesday, August 16th

Good Morning. I realized that I needed to update the blog last night but just now got around to doing it. Since I was having such anxiety about today's MRI, I called Oncology Monday and spoke to Alex's nurse. I expressed my fears and asked if we could wait until Alex's doctor, Dr. Foreman, actually saw Alex and decided that another MRI is necessary. I just want someone who really knows Alex and understands what he has gone through to make this decision. The nurse agreed and the MRI has been cancelled! We'll see Dr. Foreman tomorrow and make a decision then on how to proceed.

Alex is do pretty well these days. He's resting, eating and in pretty good spirits. I think this can be attributed to two things - sleep (feels safe again) and that he did not get the carboplatin last week. Alex did have a nightmare yesterday during his nap and he has slept with us the last two nights, but Steve and I are willing to do whatever it takes to help him feel secure. He is still aspirating on his food but I think he's getting used to it and it appears that his appetite is back. He has told me twice in the last few days that he is hungry. Whoo hoo!!! Music to my ears! We'll see if any weight has come back tomorrow.

Lil Miss Zoe is awesome, thanks for asking everyone. She doesn't blink an eye when Alex is in a bad mood and tries to take it out on her. She just keeps on him. I am officially a full time Mom now. I know I can do this but it will be a transition for everyone. I've got "prepare a schedule" on my to-do list for me and the kids so we can have some structure. It will be hard though. I will miss seeing the kids, teachers and parents at the old school. I hope to have lots of play dates!

I also want to thank, Pati, Oza and Milan for the wonderful massage! If anyone needs a great massage I know the person! I was in such good spirits afterwards too. Unfortunately, my muscles revolted Sunday and tightened right back up. I guess I will just have to make time for more massages until my body gets used to them! Hee!!

I have booked a flight out to Oklahoma with the kids before Alex starts school. Alex really wants to see his cousin, Evan and it will be good to be around my family for a weekend. I have never flown with two kids before. It should quite an adventure.

Alex has been asked to participate in a charity event at the hospital. He'll have his chemo appointment early and then will get to drive an oversized remote control car around a track with his team consisting of corporate sponsors and local celebrities. He does not know it but at the end of the race, they will give him the car. He just may make it on the news, too. I'll try to remember my camera and take lots of pictures.

Okay, well we have an appointment to meet Alex's new teacher this morning and I have my first dream dinners this evening. I'm looking forward to a good day! Hope yours is just as good.

God bless!
G

Friday, August 11th

Okay, just a quickie to let everyone know all is well. The second mammogram did not show any abnormalities. They showed me a spot on my right breast that caused them concern. For a minute or two, I did experience some real fear but I was able to pull myself out of it. Whew!

Also, to let everyone know, Alex has slept in his bed for the last two nights without any night terrors. This is a true miracle and we are so very grateful. Steve and I think that by allowing him to come to our bed whenever he needed to gave him some rest (for one thing) and a strong sense of security. I can't tell you what a blessing it was to wake up this morning almost refreshed!

Tonight Steve and I are going out with our friends for sushi. Joy will stay with the kids and we are ready for a night off. This has been a hard week for us and next week does not look much better. Alex's 2nd MRI is scheduled for Wednesday and I really don't know how to prepare him for it. I'm hoping Steve will be able to come with us this time to offer his support.

I hope you all have a wonderful weekend. God bless!

G

Thursday August 10th

Well today started off pretty well. Alex was in good (not great) spirits this morning even though it was "chemo day". Today was a vincristine only day. Which means Alex forgoes the carboplatin which takes at least two hours to administer. Sounds like an easy day huh?

Well, last night during Alex's fettucini alfredo dinner, we noticed (hard not to) that he was aspirating with almost every bite. He did not even finish his kid size portion! When the nurse found out about this she seemed very concerned. She asked if this was new. At the first meeting we had with Dr. Handler, he heard Alex clear his throat while drinking. Later, it was explained to us that liquids were difficult because they did not have any weight to them. Solids were not a problem and we were encouraged to get a thickening agent for Alex's milk and water consumption. I never did this because we just changed his flow valve on this sippy cups from fast to slow and he did much better. That is until yesterday when he had such a hard time eating.

This could explain why he has not had an appetite lately. Anyway, the nurse said symptoms should not be getting worse and that most likely they would need an MRI to see if the tumor was changing. Which means growing to me! This whole ordeal began at TCH with a MRI. I know that is where Alex's trauma began and the thought of putting him through that so soon kills me. Not to mention the thought that the tumor is growing and causing more problems! The nurse also said that they may want to put a G-tube down his nose to his stomach to get nourishment to him or even put a tube in his side for the same purpose. Neither of these options sounds good to me! I want my boy to eat. Eat like he used to eat. I remember being in awe of his appetite at times. We never worried about Alex not getting enough nutrition. He's always been a good eater, even though it goes in phases like most kids. He'd eat well for a week then kinda taper off the next and so on and so forth.

My prayer now is that this new symptom of aspirating on solids is not because of the tumor. I just don't know enough to know what else it could be. Alex's doctor, Dr. Foreman, is visiting family in Britain and is scheduled to return next week. With the events of today, I pray that he makes it home safe and sound. In the meantime, the nurse ordered the MRI and a speech evaluation which will decide on a swallow evaluation. The nurse thinks speech therapy will help Alex eat easier. We are more than willing to give it a try.

I'm really trying hard not to get upset about this new development, but I think it's too late. My mind is reeling and my heart is heavy. To top it off, I have been called back for a second mammogram. The appointment confirmation call said to plan to be there an hour and a half to two hours. The first one took thirty minutes and this is kinda freaking me out. The only saving grace here is that my mom and good friend, Jane, told me to expect a call back due to the fact that this is my first mammogram and the size factor. So I'm doing my best to just be calm and not worry. What good would it do anyway? I still believe in that loving and MERCIFUL God!!!

And just in case that was not enough, tomorrow is Alex and Zoe's last school day. They will return next Monday and Tuesday for childcare during the school's in-service week, but tomorrow is the last day each child will be with the friends they have known their entire lives. I plan to bring a large cake to celebrate the occasion but I will be very sad to pack up their things tomorrow. This school means so much to me. I absolutely adore the staff, the parents and the kids are incredible! The community support has been overwhelming and I hope that Zoe will return when this is all over, but for the time being she'll just have to put up with me during the days. Poor girl!

If anyone is interested in starting a babysitting coop with me, I'd love to hear from you. I still need to go to work at least half a day a week and it would be nice to have Zoe with someone while we are at chemo on Thursdays. The chemo room is no place for a 15 month old.

Okay, well I must say, my plate is full. Another "chemo mom", Kathy, told me today to do anything I can to "not take on one more thing". Those words are wise and I'm trying but it is nearly impossible at this time of transition. Maybe someday soon, we'll get used to this new life.

One thing I've done to make life easier is to sign up for my first dream dinners session. Steve and I picked out 6 recipes and the idea is that you go and assemble the meal from prepared ingredients, box it up and freeze it at home. If this works out, then my grocery shopping, cleaning and meal planning will all be drastically reduced. My first session is next Wednesday night and I'm excited just to get out of the house, do something without kids and be around other adults.

Okay, well that is the post for today. Please don't stop sending those comments and prayers our way. We need each and everyone of you!

God Bless.
G

Tuesday, August 8th

Okay, I did it! I'm a lousy mom! I broke down and bought JUNK FOOD!! All kinds of junk food too! Chips, cookies, brownies, muffins, anything with SpongeBob on it made it in the cart! I completely freaked out yesterday morning when Alex did not eat his waffles. Not one bite! I noticed during his bath Sunday that his ribs were showing and his legs and feet look so much smaller than they used to. Despite my size, I have always been proud that we don't keep junk food in the house. I buy pita chips for crunch and bake cookies every once in a while (there have been quite a few "whiles" lately though). The kids don't drink juice, just milk and water. Alex now gets a root beer a day though. I don't really know if this is a good strategy, but when I tell the doctors he's losing weight, they say "give him anything he wants". That just makes me cringe, because Alex wants McDonald's Happy Meals every day. Not for the food but for the prize inside. The fries are just a bonus! He never eats the burger but Zoe can woof one down PDQ!!

Along with all of this junk food I bought a lot of fruit. Everything looked so good! Pink lady apples were in and if you have not tried one you gotta get one and you'll love it, I promise. I bought grapes, plums, peaches, bananas, apples, and pluots. Alex used to devour pluots. My plan is to offer the junk food after he's eaten his "rainbow" foods. It worked last night so we'll see. I have just got to get this kid to eat.

Besides not eating, Alex is very cranky these days. Go figure! He sleeps well when he's in our bed with us. I'm more rested but could always take a nap. Zoe is incredible. She just loves to walk and talk and talk and scream! She and I are really getting to know one another more since we are able to spend more time together. She has an incredible sense of humor. Alex does too and she can often bring him out of a funk with a good "phwattt".

Well that's about it. Life marches on and so do we. Hope you all are well. Take care and God bless.

G

Saturday, August 5th

What a difference a poop makes!!! I never thought a BM could bring such joy. Finally after 5 day of laxatives and stool softeners, nature had its way. Alex was so pleased. He's a completely different kid now. He's not nearly as tired and a lot more fun to be around. I guess we'll have to keep up the medicines to prevent this from happening again.

Besides that the only new thing is that we are researching counselors for Alex. Steve and I truly believe his restless nights are due to the trauma of surgery and everything else that has happened since. Our pediatrician recommends that the therapist be located outside of the hospital and we agree. I have a few names and will hopefully get Alex an appointment soon. In the meantime, we have just let Alex sleep with us. He still has a few night terrors in our bed but at least there is more sleep for Steve and me.

Ok, well laundry beckons! God Bless.

G

Wednesday, August 2nd

Well, it's official! The sleep deprivation has deteriorated my mind. This is not Alex's last week at his school; a week from Friday will be, August 11th. I'm completely a week ahead of myself. I've been telling all the teachers that Friday is Alex's last day. I'm just glad I did figured this out before I showed up at school with cupcakes Friday!

I called Alex's new school to update his health record. They want the school nurse to evaluate Alex before school starts. Only hitch is, they don't know who the school nurse is or when he/she will be at the school. So we are in a holding pattern there.

Alex had an audiology appointment yesterday. The audiologist was very good and thorough. She found some interesting things with Alex's hearing. It seems that while both ears are physiologically fine and functioning his "hearing perception" on the right side is diminished below 65 decibels. I interpret that to mean his brain is not perceiving the sound his ears hear. This is very uncommon, but follows with his diagnosis. Alex could wear a hearing aid but instead I think we'll wait and see what has occurred after six months of chemo treatments (which may cause hearing loss). The audiologist agreed with this plan and also recommended that Alex have his speech and language evaluated. I'm pretty sure he'll need speech therapy. Alex's sweet, soft voice is the result of partial facial and vocal cord paralysis.

While we were walking to the car after the audiology appointment, Alex complained that his stomach hurt. He complained about his tummy the day before too, so I pushed on this stomach a few places and asked him if that hurt. He said "yes, a lot". So I called oncology and we went to see a nurse. She diagnosed Alex to be constipated and prescribed a stool softener. It seems that this is a common side effect of the chemo. As of this writing we are still waiting for things to pass, so to speak.

Well, it is late and bedtime. I asked Alex today, why he cries at night. He said, "Because I'm scared". When I asked him what he was scared of, he said, "that I need company". In the wee hours of the morn, Alex usually ends up in our bed between Steve and I. I'm too tired to fight the fight by this time and Steve just grunts and rolls over to make way. Alex seems to sleep very well in our bed; unfortunately, Steve and I don't sleep well with Alex in the bed. We are considering many options at this time to resolve this. When we do get past these night terrors, I think I'll write a book!!

Lastly,I returned to work today. I was anxious about my return but it went very well. Everyone was very kind and encouraging. My job responsibilities have changed so that I can handle them in a few hours a week. This is a blessing for our family. It has put a strain on my employer and my coworkers and I am so very grateful for everyone's willingness to make this happen. I am so blessed to be offered such flexibility.

Many blessings have come from this situation. We have learned about compassion, community, hope and significance. I pray that everyone's kindness (at work, home, blog community and school) is reciprocated threefold. Good night and God bless.

G