Another Update

Here is another update on Caden and his saga. Thanks to all of you who make the time to keep my family in your prayers. I don't have a picture to post, BUT you all know how bad that will drive me nuts.

As you all know we are out of the hospital. Caden is recovering at the RMH and we are little by little getting him out in the fresh air. His counts have been going up and down, but they are at a decent count right now. Unfortunately not enough to do the bone aspiration. That has been postponed until next Monday, tentatively. Which means we wait some more to see if he is officially in remission. I am scared because it is taking a while for his marrow to recover and just when we think his counts are coming up and we can do the procedure, they drop again. He did however have his final CAT scan today and his lungs look pretty good. Most of the nodules are cleared up. I think more then anything we all want to be home. It is so frustrating sitting and waiting. I am so anxious to be back in my own house and in my normal routine. It is at times like this when I am feeling really down and wondering if this will ever end, when I have to remind myself that Caden is out and hopefully on the road to recovery. I ask for continued prayers and good thoughts for healing and a safe trip home soon.

Update and Pottery

We went to the multi-craft store today and had a really fun time painting pottery. I wish I had thought of it sooner because the dish I made is for my friend Tatiana's birthday, which is Thursday. I can't wait to see how my dish and the kids' dishes turned out. We really did have fun :) Now for the update on Caden. Below is a letter from my mother and a picture.

We took Caden to the clinic yesterday for labs, a doctor visit, the final bone marrow and lumbar puncture. His ANC has dropped back down to 176. Normally this would mean he would have to go back into the hospital but the doctor told us if we are real careful with him (keep him isolated) he wouldn't have to. So we keep him in the room at the RMH or walk him straight out to the car.

They cancelled his entire follow-up procedures until next week with the exception of his labs. We will have labs done again on Thursday to see what his counts are. The CT scheduled for this Friday was rescheduled for Monday Aug. 4th; they haven’t given us a date for the final bone marrow or spinal lumbar puncture yet. (August already; can you believe it!)

Caden is taking all of this really well. He isn't fighting us on staying in the room because he doesn't want to be in the hospital. He was in there so long that every time we are in the car, he has to have his window down for fresh air. It is bitter sweet; you realize how much he misses being outside but it isn't worth the risk to take him to a playground or to the beach yet.

Attached are a couple of pictures from his discharge date that you will love. It was a blessing to share in Caden and Schelly’s excitement when he saw his mother coming toward us on the path to the RMH. He had his arms reaching out for her as he ran toward her saying, “Mommy I'm free from the hospital!!!!” I wish I had taken a picture from behind to capture the look on her face too; but his smile is priceless!

Please continue to pray for healing and a smooth transition.
Cindy

What's That? Good News! About Time!

Oh Happy Day!

I have attached both the letter and the pictures my mother sent today as her Caden update. It is finally time for some good news. NOTE: Corinnea notice your beads in the second picture :)

Hello, hello, hello! I had my update ready to send out yesterday. I was going to give you the results of his blood work. His ANC was at 238!!!!! I was so excited, the nurses were laughing at me! Joyce, the nurse Caden had yesterday morning, is in love with him. She told me she is happy and sad and that she is going to miss him so much. Oh and surprise, this is the beginning of your 28 day countdown, the doctors are discharging you today! It was so funny because Caden was still asleep when she told me. I packed our belongings then woke him up to tell him we could leave after he took his medicine and ate his breakfast. He jumped up (he never wakes up like that), took his medicine, put on his own clothes and said "yeah, let's go I will eat at the RMH." It was a good thing I had already packed our belongings! I told him I needed to call his Mommy to come pick us up but he said no, he wanted to walk to the RMH and surprise her. What comes next? We wait for his counts to come up so they can do the final LP and Bone Marrow test, this is to confirm he is cancer free. (Just writing it brings tears to my eyes.). They will also do one more CT scan before they are done (I think to check his internal organs before they let him go home). They did the final hearing test last week; he has some hearing loss in his left ear (this doesn't surprise me as this is the ear that has been bleeding periodically throughout treatment). Before they can remove the Hickman line his platelets have to be much higher and stay high on their own. We are far from that right now. His platelets and RBC are low enough that they will be doing transfusions today. They will do that in the out patient clinic at the hospital. We will be there all morning but will go play this afternoon. Attached are a couple of pictures of his last day at the hospital. He went around and gave his nurses hugs before we left. Those pictures haven't been downloaded yet as they were taken with my other camera; these were taken with my Blackberry. Please pray for his bone marrow recovery and that when they do the final test we get the official word that his cancer is gone! Love to all of you and thank you for your support! Cindy

Caden Update

It's that time again. I have nothing of my own to talk about because I did a whole lot of nothing today. The rainy day made me tired and BLAH. I did a few digital scrapbook pages, made a few (OK, eight) sets of clips for the store, went to the store, and started a movie so horrible that I stomached about 30 minutes without beating my head on the wall and turned it off. I am posting the Caden update my sister just sent me. Some of it is a repeat of what my mother said in the last post about him, but there is new stuff so I thought it I should go ahead and post. So, here it is:

"Sorry I have not posted an update since the prayer request. I have not been able to get online at the hospital and it would be a pain in the butt to post an update with my blackberry! Anyway, Caden had his CAT Scan and they found more little nodules in the lungs. No internal bleeding so that is good. Based on lung results they did another procedure, the same as last time, where they squirt fluid into his lungs and then suck it out and test it. So far nothing has come back on that. As for the rash/sores on his skin...also graham positive cocci (sp). Basically a bacteria growing in his skin and creating sores. He is on the most powerful antibiotics and anti-fungals he can be on so they are not to concerned about it. Today his foot (where the worst sore is) actually looks like it is healing a bit. Really all that will help is time. His body has not recovered yet and is not producing new cells yet. He had to have a blood transfusion and platelets yesterday. He has not been eating well and he has lost 2 lbs already this round. They are discussing a feeding tube through his nose if he loses more weight. :( We shared that information with him and he is trying so hard but his poor little body is not cooperating that well. I asked the Dr about a time frame and it could be anywhere from 1-2+ months before we get home. I expressed my concerns about Cameron and him starting 2nd grade in Alaska with the rest of his friends. I asked the docs if we could go home as soon as his counts were safe to fly and then he could recover in his own house and have his central line removed at Providence in Anchorage, but I don't think it will happen. Bummer. I'll probably be back just in time for snow. Yipee!!! (that was sarcasm) Please continue to pray and send good thoughts our way."

That's the news.

Caden Update

Since I know that there are several of you who read this BLOG and like to know how Caden is doing, I am posting my mother's most recent update and two pictures. My brave little baby is putting on a brave happy face for the photo, but boy they make me cry. I want so much for this ordeal to be over and for Caden to get back to being only a child and nothing more.

"Good Morning, I'm back in the hospital with Caden and Schelly is out to catch up on her sleep. Caden's schedule has been such that he is not going to sleep until 3 or 4 in the morning and then sleeps very late in the day. This is very difficult on Schelly and me. It leaves us exhausted so we have been doing 2 day rotations. I spoke to the doctor when I got here yesterday and was told the following: Arm biopsy-No inflammationNegative for fungusNo results on the Gram stain, it will be another 1-2 days until they have them.They did see positive diplococci in the vessel (these test were ordered by the Infectious Disease team and the doctor I spoke with did know what this meant. I will find out when that team comes in today or tomorrow.) Lung results - Positive for streph veridan (just a few not significant)Positive for micro coccus (just a few not significant)The doctor is not concerned about these two because he is already getting antibiotics that cover them.We are still waiting on the viral results. Now because of the above results they ordered an echocardiogram of his heart to see if there was any bacterial vegetation around it, it was negative. And, the infectious disease doctors have ordered a respitory PCR (taking a sample of his runny nose to see if positive for a virus). I'm sure it will be negative - it is just being in the hospital that makes it run! Caden has been running a fever between 101 and 103 but continue to take his tylenol. Caden asked me to tell you that he still has hair on the top of his head but it fell out in the back and that his foot hurts but he is getting better. He said he is going to the Ronald McDonald house pretty soon. Well I don't know how soon it will be but I think it is great that he is thinking so positive. Thank you for keeping us in your thoughts and prayers. Cindy"

I don't have anything to add other than thank you so much to all of you who pray and send well wishes their way. You are a blessing more than you may ever know.

A Bunch Of News

My girls spent some time entertaining mom and dad today by doing a cheer and I thought I would share but, yet again, the video clip is too big. I was loving every second of it. I think they are just about the cutest things in the whole world :) Granted, I am biased but who cares? The cheer was brought on by the COMPLETELY HORRIBLE movie Bring It On 3. It really was no good, but the girls loved it. Don't worry though, my head has recovered from its repeated banging on the wall.

I got a special order today from an etsy customer. Exciting right? It is for a larger dragonfly in vibrant green for the lady's garden. She has already ordered a different dragonfly so that is a good thing because repeat business shows customer satisfaction. This excites me very much. I am attaching a link that I would like all of you to look at and send on to anyone who makes polymer beads. The program is a wonderful one that has helped Caden through many a rough day and procedure. The site is: http://www.beadsofcourage.org/ please check it out and consider making donations. It really has been a blessing for my family and is such a wonderful selfless idea. Along those lines, here is the latest news from my mother. I am sad and my heart breaks over that little guy and all his worries. I am however glad that my mom and sister keep me updated.

Hello again,

Just wanted to update you on what has been happening with Caden. As I told you he has some spots that have been appearing on different parts of his body. They start out as just a little red dot then get bigger and hurt. The infectious disease doctors came to see him today. They don't think he has chicken pox or shingles. Actually they don't have any idea what they are so they want to biopsy one of them tomorrow.

Sunday Caden started complaining that his head hurt. It continued to get worse to the point he was waking up during the night crying that his head hurt. Yesterday we requested the team of doctors to come talk to us. The decision was made to do a CT scan on his head, chest and abdomen today. We were told this evening that they do not see any vascular leaks (bleeding) in his head (whew, glad to hear that!). They don't know what is causing the head pain. We will be paying close attention to the head pain and swelling for any changes.

Hopefully it was just related to the fevers he is having. They did see "a lot" of small nodules in his lungs. Apparently they are different than the ones we treated last round. (I wonder if they the same as what is on the outside...just a thought flitting through my head) They think they're a virus, not bacterial. We will be meeting with the pulmonary specialist late tomorrow morning to see if he agrees with the team to do the same lung procedure that they did last round. If yes, they will have a surgeon biopsy one of the spots at the same time (one anaesthesia). Risk? Yes there are always risks but at least they will be able to identify the spots. With a 0 ANC his body will not be able to fight any potential infections. However I'm not to worried since they have him on some heavy duty antibiotics and we will do everything possible to keep it sterile.

We will continue to monitor his counts because of the rapid drops we've seen this week. There has been traces of blood in his stools but nothing showed up on the CT so they're not worried. I'm very sad to say....Caden's new hair is falling out. He is so cool about it though, he just says "Don't worry Nana, it will grow back!". He is such an awesome little boy!

We are ready for his counts to come up but we think we still have a way to go. The nurse told me his ANC was 0 for 36 days last round. If you remember, we were told this round would be "at least as bad as the last one.". I don't know if it is worse but, it has been different! Well it is late and has been a long day. Thank you for keeping us in your thoughts and prayers. Cindy

Update on Caden

Hello all. Here is an update about Caden from my mother. If you read carefully, her spirits sound fairly high, which is very good. She isn't as young as Caden and it is harder for her to bounce back. I am also attaching the picture that she sent because I think it is cute. It's definitely a Happy 4th of July picture if I have ever seen one.

"It's Saturday afternoon, Caden is taking his nap (rare these days) so I thought I would take advantage of the free time to send out my update. The attached picture is Caden approved. It was very important that the picture showed him smiling. He also asked that I tell everyone that he feels good! Actually, considering everything going on right now, he is doing better than anticipated. What's going on? He is still running a fever; not as bad as last round because this round he is a big boy and is taking his Tylenol. "It makes me feel better Nana and make my bever go away!". I am so proud of him, we have come so far! Because of the mysterious fevers, he is on three antibiotics again. So far we are still blessed without the negative side effects we had last time and, the blood cultures have all been negative. His ANC count is still 0 so we all worry about infection. Purell is great stuff, if you don't use it, get some and use it, it helps! Of course being cautious of who he around helps too. He has developed some sores on his right foot and now has some red spots showing up in different parts of his body. They are not sure what they are because with his counts so low, any normal fungus or virus does not present itself in the normal way, thus making it hard to identify. To me, it looks like a staff infection. So, being the bossy Nana I am, I insisted they send in the cleaning staff yesterday to sanitise the entire room! I mean I moved everything around and out that I could and had the beds stripped and wiped down. I then wiped Caden thoroughly down with Chlorhexidine wipes. The sores on the top of his foot look a tiny bit better, the rest look the same. There was one rash spot under his arm that is completely gone today. I'm sure the improvement is due to both the antibiotics and sanitising. I asked the doctors how much longer they think it will be before his ANC comes back up and the shrug and say, "We expect them to come up sometime in the next 6 weeks." Humph, seems to me they said that 6 weeks ago. Okay, I am exaggerating, but it feels like it! Like I said last week, we are all ready to be done. Most of all, we want Caden to be better! Please keep the prayers going, I believe they are working. We enjoyed watching the fireworks on TV for a few minutes but Harry Potter was more interesting to Caden! Thank you and God Bless. Cindy"

Caden Update

Well, my sister sent out this update and I thought I would share that along with the pictures she sent. Please note that although Caden's hair grew back between the last and most recent round of chemo, it will most likely fall out again. The good news is that now that we know it will grow back we are happy. Sometimes it doesn't. We are blessed. Please note that although there are many reasons why he shouldn't, Caden still often has a smile on his face. Granted it is not always and there have been times when I have been on the phone that he has been pitching a fit or being Polly Pissy Pants, BUT he is entitled I think. I wish I could smile more. I think I will try it. Below is the email from my sister:

"So, Caden is officially done with his chemo!!!!!!! Praise GOD! Now we wait...we wait for him to get sick....we wait for him to get better...we wait for his counts to recover enough to be discharged....and then we wait for them to recover even more so he can have the central line removed from his chest. We are so close to being done. This last stretch is so agonizing. The drs have informed us that he will get sick with something. They have said it is next to impossible to not get something because he will be without an immune system for so long. Wouldn't you know it...they were right. He spiked a fever today. So his blood has been sent for cultures and again...we will wait to see if anything grows. Not really much else to report except the weather here has been awesome and I have been trying to spend as much time outside with Cameron as I can. His favorite activity lately has been going to the beach to find crabs and other creatures at low tide! He is attending a really neat day camp with the Hutch School and is having a blast. Too bad Caden can't go outside and enjoy the beautiful weather. We are stuck inside. He can't even leave the ward because his counts are too low. Oh, well, fortunately this is not permanent and hopefully he will be out soon enough to enjoy a little bit of summer! Oh, and check out cadens new hair, eyebrows and eyelashes in the last pic!!! He is so excited over it!"

Honestly I didn't have much to write about today so I am glad that my sister sent this out. Now I can keep up with the blogging everyday goal.

Just Chat Time

Well, I spoke with my mother this morning and there is nothing major to report other than CADEN HAD HIS LAST ROUND OF CHEMO!!!! Yeah! I am so happy about that and I can't wait to receive the good news that he is well and has returned home with his mother and brother. I am sure they can't wait to see the end of the hospital no matter how nice they are to them. Something about being in your own home with your own things is comforting and I think it will actually help his recovery. Not to mention, Cameron will be able to be with his friends and go back to his place of comfort. I feel bad for all of them. I know that Schelly wants to get home and so does my mother.

Oh, my mother did say that both her and Caden got food poisoning yesterday. YUCK! Poor babies...as if they didn't have enough to worry about. Apparently the hospital is denying the issue and is stating that is simply an "outbreak of the flu." Pay no attention to the fact that everyone who got sick did so ALL at once. :) Geeze, be honest you know? Just say oops we goofed. Liability I suppose. Whatever. That is one of the many things wrong with our society. So many people get bagged on for telling the truth that all we seem to get from so many people are simply versions of the truth. I am expect NOT to tell people when they have hurt me or made me angry because I might upset them. Frankly, I think it a load of crap, then again, I am no one.

Wow, that all came out like I am upset about something, but actually I had a decent day. There was a little bit of a downer early on, but I got over it. You can bet I didn't get to talk about it to those whom it concerned though :) I did get to talk with my JennyP later on in the evening and she helped me feel better though. I must say though it is nice to have a friend that you can just tell you are having a crappy day and know that they understand. I can tell her that along with all the dumb immature things I do and know there is no judgement there because she has her moments too.

It should go without saying that Michael is like that too, but I will say it so that someone doesn't think I don't like him :) Thing is, she saves even him sometimes because I can bounce my anger off her and she will tell me if I am being unreasonable. As many know, that is WAY better than if he were to do it during a disagreement. I am attaching some pictures of my nephews, my brother and I, my dad and I this time so people know I love my family too. I would attach the page I made with my husband on it, but I was instructed not to. Bossy little Polly Pissy Pants :) Gotta love him.

Caden Update from Schelly

"Things are going pretty well. Caden is inpatient and well into round 5. Yahooo!!!! We are almost done. It seems like it has been an eternity, but only about two months to go. I thought we would be home sooner, but I was wrong. He had his first week of chemo last sat, sun and mon. He started his second week today. He gets chemo every 12 hours for Sat and Sun. On Monday he will get one last shot of chemo into his thigh muscle. Then he is done with chemo. Hopefully forever. As much as I would like to believe that...the Dr's have warned me that he will get another type of cancer later in life. It's not a matter of 'if' it is a matter of 'when'. So lets hope for age 95 and toe cancer (if there is such a thing, lol, who needs their toes at 95 anyway!!!!). Seriously though...he is doing well now. The docs have also warned that this last round takes the longest for the marrow to recover and he will get some sort of infection at some point because he will have absolutely no immune system for several weeks. He will have to stay inpatient the entire time. I am praying for a miracle. I know they exist because I gave birth to two! Please keep us in your thoughts and prayers! For all of my friends in Alaska...man...I wish I was there enjoying the sunshine with you. Soon. We will see you all soon. "

The update from my sister sounds pretty positive so far, which is a really good thing. I would hate to see him lose his gorgeous little smile. Poor baby!

The Videos

Here I am trying AGAIN to upload videos to this BLOG. I swear that I am not technologically challenged but I don't see how these short little videos can possibly be so difficult to download. They are all just a few short minutes but I am having a rough time with them. I still can't figure out how to place the real-time clock either. I am still waiting for JennyP to read this and tell me. We did a whole lot of nothing today and the weather was a bit chilly. There is really great news on the Caden front though...if you can say that chemo is good news. Well, honestly the end result will be and he will go home fully healed and live a wonderfully normal life driving his mother crazy just like every other child. Anyway, my sister sent an email saying that his blood counts are up enough that they can begin the fifth round. This is good news. I send out updates regularly and must say thank you to all of my friends and family who pray or send well wishes to them. My sister's update is below:

"As much as Caden has enjoyed his time out....we are starting round 5 tomorrow!!!!! I know, silly to be excited about that, but it holds more meaning then you'd think. It means that his counts have come up enough that they do not think the leukemia is back and he does not need to have the bone marrow aspiration today. It also means that the sooner we start this round the sooner we will be HOME!!! I am hoping to catch some of the Alaskan summer but it is looking unlikely. The weather here is actually not as nice right now as home. Go figure. C'est la vie. I am hoping for an uneventful 5th round and a speedy recovery. In a perfect world right?? Except our world is so far from perfect. I am actually grateful for that. How boring life would be if all were perfect. I am also grateful for all of my family, friends, and everyone accross the globe praying for us. Strange how we have become part of the lives of people all over the world. Thank you."

Thanks again to all of you who take the time to think of my family when you are busy with your own lives. It means more than you may ever know. Since I can't seem to get the videos to upload, I am attaching some recent pictures of Caden and Cameron. As I noted in my last email, they make me happy and sad at the same time. It is so sad for me to think that soon this poor little boy will be sick to his stomach and weak again from the treatment he needs to get rid of this aweful cancer. It makes me happy to see his big smile though and I find solace in the fact that children are often stronger than adults and the bounce back better than most. There is a large blessing in that fact.