New House, New School

Wow....it's been 6 months since my last post. Time sure does pass quickly! Speaking of time...we celebrated Caden's 2 year mark in remission!!! We went to the rain forest cafe at the South Center mall. He loved the volcano cake!

He had his 2 year visit and his counts came back well. His platelets are still not in the normal range, but this could take years. We are blessed with good health so I can't really ask for more.

The boys went to California to visit my Mom and the rest of my family for several weeks this summer. They returned on the 17th of August to a new house in Seattle!!! A REAL house...not a condo, not an apartment....a house with an awesome yard! The best part for them...they have their own rooms for the first time!! They are very happy.

They started school last week; 4th and 1st grade. They are in a pretty good school. I was worried about them being placed in two different schools, but they are together! I was relieved.

We are still getting everything set up here in the new house and getting to know our new neighborhood. Things are going very well with my job. I started a new position with Army Corps of Engineers in Finance and Accounting a couple months ago. Still slowly working my way up the ladder, let's hope I like what I see when I get to the top!

Caden's speech is doing so much better! He has graduated to visits every 6 months to check his counts. He will still have to have the echo cardiogram every year to check to make sure his heart is still strong. Other than that, just living a pretty normal life and he is just as active and silly as any other 6 year old boy!

There is a friend of mine that had been on my mind recently. His name is Dennis. He and Caden have a special bond, they are both amazing individuals with strong spirits and minds. Dennis has been in and out of the hospital his entire life due to his heart. Dennis had his 5th open heart surgery just before caden was done with treatment in 2008. Their bond is so special because they are both survivors and they share the same birthday!!! I decided to check the blog page for Dennis to check his status and it hasn't been updated in awhile, but it did remind me to come here and update Caden's blog. When I logged in I saw I had 3 messages; one from Dennis's sister!!!! Crazy huh. It was from back in April, but still...I sure hope Dennis is doing ok. Please give him our best Eunice (I am pretty sure that is your name, maybe spelled wrong??). I was surprised to see a couple other comments. I had no idea that anyone still viewed this blog! Thank you for remembering us and keeping us in your thoughts and prayers! I guess I should post more than every 6 months!!

I just realized what today is. The 9 year anniversary of 9/11. This is a very memorable day for all of us. I hope you all remember those that fell on this day; I will. I am thankful for my family and friends and our freedom. Take care.

Spring is In the Air!!!

This winter was a little rough. We made it through pneumonia, H1N1, colds, stomach flu, ear infections, bronchial infections..... I know, sounds insane, but trust me when I tell you he is doing much better than last winter. Things are going wonderfully for me at work. Making my way up the ladder; I just hope I don't get to the top just to find out that's not where I want to be.

The boys are doing well in school. I can't believe this school year is almost over! Oh, and my favorite part....no snow!!!!! Great, I probably just jinxed the city. We'll have some freakish April snowstorm!

Caden has an Audiology appointment next week at Seattle Children's. He had some hearing loss during treatment so they will be checking up on that. I am sure he is fine. His only problem is normal 5 yo boy selective hearing. :) He is adorable right now. He is missing all four front teeth, top and bottom that is.

We are really looking forward to the sun and warmth! Caden's birthday is coming up, May 11th. He will be 6! 19 months in remission!!! We have almost made it 2 years! 3 more to go.

Well, I guess that's it for now. I will post again in a couple months. Have a great Spring!

A New Year!

Wow...so sorry it has been so long since I posted. I don't even know that anyone reads this blog anymore. In case there are still a few people checking in, we are doing great! The boys are loving the Seattle Area and their school. I am doing very well at my job. We are all thankful Caden is still in remission. He had an appointment in November at Seattle Children's and his counts were doing well and his echo was normal. They had to check his heart because one of the most common side effects of the treatment he had was weakening of the heart muscles. He has a normal strong healthy little boy heart. :) He is now going to start his long term care. So he will be seen every 3 months and they will check for any other side effects and continue taking blood for counts. I guess there isn't much more to say. I hope everyone had a wonderful holiday season! We are really looking forward to spring and summer. Praise God for good health.

The Boys Are HOME!!!

The boys are finally back from Cali and settling in their new home. They had an amazing summer down there. They were both in school for a trimester and now they will start school here in WA on Monday! They are both much bigger than when they left. It's amazing how fast time goes by.

Caden was seen at Seattle Children's Hospital a couple days ago. He has an ear infection and is still getting over his bronchial infection. His counts have dropped some, but they are not concerned about it yet. His body is having a rough time producing platelets. His count right now is 129,000 and normal count would be 250,000. I am just hoping his body is still recovering and it will just take some more time.

We are looking forward to having full seasons here and I think this will be a very healthy place for both of the boys. Your continued prayers are always appreciated.

A Big Change

Whewww...it's been awhile since my last post. Sorry about that. I have just been so busy!!! We are no longer in Anchorage. It was a fast move, but I took a transfer with the Corps of Engineers to their Seattle District. We were in Washington at the end of May. The boys are in Cali for the summer with my family while I get everything set up and settled here. They are having a blast!!!! Nana sure is taking good care of them! I miss them dearly, but this way they will come home to a home with all their things set up and everything in order (school, childcare, etc). I think the milder weather here is just what Caden needs. Last winter was just so hard on his little body. Now though, health wise, he is doing awesome!!! He is just about at his one year in remission mark. What a blessing!!! Cameron is growing like a weed and has been so good through all of the transition. I am thinking I will go to Cali for a visit around Labor day and then the boys will join me up here around the end of September. Hopefully I will get another post up when they get up here! I hope everyone has a fantastic summer!

Heart Walk 2009

Well folks, we did the heart walk last Saturday, April 25. It was a 5k and Caden did soooooo good. He jogged about 2/3 of it and then needed a piggyback ride from yours truly, lol, then jogged the rest until the very end. Had another piggy back ride, but I made him cross the finish line on his own!!! Funny that he wanted the rides whenever we hit a hill!!!!! Needless to say he slept very well that night! Cameron did a combo of walk/jog and required no piggy back rides (thank God, that kid weighs a ton!). It is exactly two weeks until he turns 5. I remember this time last year...he barely made his 4th birthday and struggled for a long time after. He has come such a long way. We all have. I am so thankful for our good health and I really cherish our lives. His counts are doing pretty good. His platelets are still not in the normal range, got a ways to go there, but that takes the longest after treatment to get back to normal. He still gets sick more often than he should and it lasts a little longer, but all in all he is doing awesome!!!!

Almost 5!

Sorry it's been so long. I am not even sure anyone reads this anymore. I figured by now we have fallen off of the radar. I am really bad at keeping this updated now, single parenthood keeps me very busy.

Caden's surgery went pretty well. His platelets were barley high enough to do the surgery, and because of that there was more bleeding than expected. They had to leave the drums uncovered, normally there is a special paper the covers the hole from the tubes to help it heal. It seems to have healed fine thought without the paper. He still continues speech therapy and there is concern with him starting kindergarten in the fall. He will have his hearing checked soon.

In a month he will be 5!!!! He has been in remission for almost 8 months. 4 years and 4 months to go! We can do it! His health has been up and down the last 8 months, but he is doing really good now. For any of you still reading this and still praying for us, thank you very much!

Happy Easter!

A New Start

Sorry it has been so long since the last update. Holidays and stuff. You all know how it goes. We had an uneventful Thanksgiving and Christmas. Just the boys and I. Same for New Years. Stayed in for all three holidays. I had been really apprehensive about the start of this year. It was January 3, 2008 when Caden was originally diagnosed. Something changed though, and I know everything will be just fine. Caden has surgery on Jan 6th for his ears. His counts will be checked on the 5th to make sure they are high enough to follow through with the surgery. My mom will be here for a bit to help with him so I do not miss anymore work when he is sick. She is the best Mom ever, next to me of course!!! Hahaha. I will put out another update after the surgery so everyone knows how it went. Please keep us in your thoughts.

And another blow...

3 months home now and life has been crazy. Caden's health has gone back and fourth, counts up and down. He has had the stomach flu recently and is coming down with something else (at least that's what his drs think based on his counts). They told me not to worry, that this is normal after treatment. It does not mean he is relapsing. The nurse told me that he may get sick frequently for the next year or so. Wow. I have so much to be grateful for, but this sure is making life tough. I started a new job and to say the least they are not pleased that I am out as much as I am, but what else can I do??? I am all Caden has up here in Alaska. Other then that, Caden is doing awesome. He is enjoying childcare and speech therapy. Oh...wait...there is one other thing. His left ear keeps bleeding. The dr did not know why and recommended I take him to see the ENT who tubed his ears. When Caden was down at Children's they told me the tube had come out of left ear and the tube was still in his right ear. The tube is still in his right ear but I never saw the tube in his left ear come out. So Caden saw the ENT on Thursday night. As I feared, the tube had gone down into his ear and the ear drum healed over it sealing it in. A bloody polyp has formed over the drum, and naturally the ear is trying to push the tube out, which causes the polyp to bleed. The ENT will have to put him under anesthesia and remove the polyp and dried blood and tissue, cut through the ear drum, remove the tube, and patch up the drum. She will also remove the tube in the right ear while he is under. Geez. Poor guy. As if he hasn't been through enough. He is such a trooper though!

I am so busy...with cub scouts, basketball, oncologists, speech therapists, working full time, running a household, and now the ENT! Some days I feel like Superwoman and some days I am so exhausted I barely resemble anything super and don't feel very womanly! hahaha

Thanksgiving is coming up and we have no plans. It will be a little lonely. I guess the three of us are staying home. That's ok...we are all thankful to be here!

I hope everyone has a fantastic holiday!

HAPPY BIRTHDAY MOM!!!!!!!

Adjusting

We have been home for just about 2 months. All is going pretty well. Caden got what may have been pink eye the first week back in childcare. He is in a smaller home setting so I have no idea where it came from if even that is what he had. Oh well. He needs to build up his immunities anyway. He should be going in for more blood work either late this week or early next week. I am confident that he is doing great!!! He starts speech therapy at Providence on Thursday. We are very blessed to get him in so soon! Hopefully he will be fine once it is time for him to start Kindergarten. Less then a year! My they grow so fast! Cameron is doing awesome in school and he starts basketball this week. He is also doing Cub Scouts. Whewwww...the life of a single mom is exhausting! I will post again in a week or so and let everyone know how his counts were. Thank you to all who still pray and send warm thoughts our way!

Still Doing GOOD

Everything is going great!!! We are back into a normal routine and I forget that all the people still following his progress may want to hear the good too! A good friend reminded me that people don't just want to hear the bad. Sooooo...lots of good to share. Cameron is doing great in school. Caden is back in full time childcare and I am back to work!!!! I am however starting a new position in less then two weeks. I will still be working for the Army, but on Elmendorf Air Force Base. It is a great opportunity for me and I am so excited about this next step in life.

Caden will continue to go into the Oncology clinic for blood work once a month. As long as his counts stay within normal ranges, he should not have to go back down to Seattle. He is still on a couple of medications, but that should only be for the next couple of months.

My biggest fear now is the cancer coming back. There was a teenage girl in the hospital at the same time as Caden. She has the same diagnosis and she had the exact same therapy, including the test study drug. She went into remission about a month before Caden and two months later her cancer came back. Now she is back at Children's hospital in Seattle awaiting a bone marrow transplant. I hope that you will all pray for her and her family.

It is scary to think about that happening with Caden, but unfortunately that could be a reality. We have already witnessed so many miracles with Caden that we are going to keep praying and remain optimistic.

The joys in life lately have been watching the boys live a normal life. For Caden, the bath is a huge deal!!!! No more tubes, no more plastic covering his chest, and he is able to lay down in the water. The small things in life are always the greatest. We have gone on bike rides outside (not around a hospital ward), gone swimming, to parks, hiking, and he has a blast even shopping. Just being out and about is enough for him. So I have posted some new pictures of Caden doing normal healthy boy things!!! Enjoy and I am sorry if my laziness kept anyone in suspense! :)

Sooooooo GOOD to be HOME!!!!

We are back in Alaska. Trying to get back into a normal routine. Well...semi-normal all things considered. It is so good to be home. I feel like I lived an entirely different life in Seattle. This definitely was a growing experience for all of us! The boys were so excited to be home. It was like Christmas in August with all the toys and things they have not seen or played with since January!!!

We made it back in time for Cameron to start school on August 20 with all of his old friends. He is in second grade now and doing great. It is amazing how resilient children are. We can learn a lot from them!! Caden should go back into childcare soon which means I will be able to get back to work. It may sound a little odd to some but I am so very thrilled to be going back to work!!!!

I feel so very blessed. I have the most amazing mother in the world. Two wonderful children. A great job. Not to mention my home and car thanks to all of the employees who donated their annual leave!

So now we just pray that the cancer does not come back. Caden will go into clinic once a month for blood work and check-up. Thank you to everyone that supported, prayed, sent good thoughts and care packages to us. I hope you all will continue to pray and keep us in your hearts and minds.

We're Coming HOME!!!!

Soooooooo...YEAH!!!! We are finally done!! Caden had his line removed today and we should be flying home on Saturday afternoon!!!! I can't even describe how I am feeling right now. Like I am gonna explode from positive energy!!!! He will still be out a week or two when we get home but that will be good for all of us to re-adjust and re-acclimate (is that even a word???). WOW...LIFE IS GOOD!!!!

Woooohooooo!

It seems like we have been here an eternity. We have lived an entirely different life here in the last 7 1/2 months. Waiting, and waiting, and waiting... We have been through the unimaginable. It was not in vain. We found out today that Caden is officially in remission!!!!! That's right...CANCER FREE!!!!! I pray it stays that way. We will be heading back to Anchorage very soon and he will continue the last stage of recovery in his own home! Thank you everyone for your thoughts and prayers! We did it!

So Close...

Below is an update sent by my mother. To most of you the numbers below don't mean much, but to us it is great news!!!!! His marrow is starting to recover. We should find out next week if he is in remission. A couple days ago when my brother came up for a visit, we went to the Crab Pot. They had so much fun smacking the crab with the mallets! We took a walk along the pier, ate ice cream, and watched the sunset. Yesterday the weather here was gorgeous. It was in the low 80's and we took a trip to the lake. We were on a little beachy area of Lake Washington in South East Seattle. Caden was not able to go all the way in the water because of bacteria and his central line, but we wrapped it up and he was able to get waist deep. He had fun playing in the sand. We were all having so much fun I forgot to take pictures!!! :( I am sure there will be more opportunities before we leave Seattle. Thank you for your continued prayers and support!

Hmct 26.3. Pltlt 35. Wbc 2.1. Anc 855> >

Yes, you see it right, his counts have come up some on their own! They will check it again to make sure it hasn't dropped again. If it is still up they will do the LP and bone marrow aspiration to confirm he is cancer free. > >

After that....we will wait and see what the doctors say.> >

I am so excited for Caden. I think we will need to do something special for him when we get the results!> >

Love to all and pray for cancer free results now and in the future!> >

Cindy

The Good and the Not so Good

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.

We're out!

So...below you will see the update posted by my Mom Saturday. There have been a few changes since that update. Caden is officially done with inpatient treatment. His counts had come up over 200 and he was discharged. His marrow is not responding as well as we would like. He had to have a platelet infusion yesterday, but they have assured us that this is normal and it may happen a few times before he is completely done. He was supposed to have his final bone aspiration today but after the labs came back we found out that his ANC had dropped down below 200. :( They said they would not readmit him but we needed to be very careful and keep him isolated at the McDonald House. His bone aspiration and CAT scan have been put off until probably the first week of August. I am posting some pics that you all will love. This has been a tremendously trying journey for us all, but as Caden's mother I cannot describe how I felt when I saw him coming down the path with my mom. after discharge. He had his arms reaching out for me and he ran toward me saying "mommy I'm free from the hospital!!!!". Please continue to pray for healing and a smooth transition.

From my Mom:

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.

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

Update by My Mom done Sunday 7/20

This update was sent out by my mother on Sunday. Really no change to it except his foot is almost healed and he is full of energy. Still waiting on the counts to come up. Some good news though....I may be home sooner then expected. The doctors told my mom that once Caden's ANC is up to 500 thousand then they will do the bone aspiration. If that shows he is in remission then they will do another echocardiogram and if that looks good then we can go back to anchorage. They told us he would be able to recover the rest of the way up there. He would have to go into clinic a couple times a week at providence and may have to receive a few transfusions here and there, but he will be home! Then once his counts are high enough and his marrow is productive enough on it's own without transfusions, they have an excellent surgeon at providence that can remove his central line. He will need to stay at home throughout this process and after the surgery but he will be in his own bed, with all of his own toys and in his comfort zone. Should we be out of here within the next three weeks then Cameron will be able to start second grade at Ursa Minor Elementary with all of his friends! What a blessing!

> > Hello!

> > We have been in the hospital for 36 days now and still no ANC. :-( However, his hematocrit is starting to go up on it's own. His platelets are down to 6 so he will get another transfusion today.

> > Since I explained to Caden what an NG tube is (a feeding tube that is inserted through the nose down to the stomach) he has been eating. He had lost 4 pounds but has put 2 back on and seems to be eating pretty good. He nibbles all day long. So, no NG tube!

> > I really thought I would see his ANC start coming up this weekend because of several things that are happening. His hematocrit coming up, the sores on his feet and body are healing, no fever for several days now. Maybe tomorrow it will come up!

> > Child Life is a department in the hospital. Its purpose is to help the children learn to cope with this experience. When Caden was refusing to get out of bed at all and wasn't eating we asked if we could use the Wii. As you have heard throughout my updates Caden loves to play video games. They brought it in and we told him the only way it would work is if he got out of bed to play. He did it! He likes to be the pitcher for baseball and I got to be the batter! He did the bowling and a little boxing when I was here too. Then he told me he was tired and asked me to do the boxing. Wow, using this thing is exercise, my arms were sore! Anyway that was the beginning of him getting better. He got exercise which made him hungry.....etc!

> > Again, with all the test that were run they have no idea why he was running fevers and no idea what the sores were on his feet. I am so thankful that he has not been as sick this round as he was last round. I was really scared last round!

> > This whole adventure is taking longer than anticipated. It has been scary, we have been sleep deprived, I miss my home, the rest of my family and wasn't able to be with my dog Jacques of 15 years when he passed away. But, I wouldn't want to be anywhere else but where I am right now. I am so close to Caden and we have had some wonderful fun times full of laughter during these past 7 months! It has been fun being silly for no reason other than to make him smile and laugh.

> > I have been blessed by my employer letting me work remotely for so long, my husband who has been keeping busy getting things done around our home, my friends Tom and Sandy who have helped me keep my sanity, my sister coming up for a month, my son Ronny who as come and will be bring Cameron back on August 3rd. Family, friends and people we have never met who have sent cards, gifts and get well / hang in there messages.

> > But most of all, all of you prayer warriors! Your prayers have helped give us all strength, hope, patience and healing. There were times I wasn't sure I could cope with this situation but someone would call or send a note of encouragement and I would remember all will be well. Thank you. You have touched all of our lives in ways you may not even realise.

> > My cousin Rick told me a story about sharing my updates with his co-workers and some of their reactions. By sharing this with me he showed me how we have also touched so many other lives.

> > We don't know why this beautiful little boy has had to go through this experience except perhaps to change some of our lives. I know mine is, Denise (my co-worker) has told me how this has changed hers (she did a cancer climb to the top of Half Dome in Yosemite - you go girl!), Schelly's and Camerons too!

> > We would appreciate it if you would keep praying for all of us as we are not done yet!

> > Love to all and may God bless you,

> > Cindy

Suprise!!!! Still waiting

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 anti-biotics 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 drs 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.

Please Pray

Well...we knew this was coming. We need prayers, warm thoughts and wishes. There is something going on with him and he is going in for a CAT scan this morning. I am afraid his head is hemorrhaging. They will do a head, neck, chest and abdomen scan. He is complaining of pain in the back of his head and it is a little swollen. His platelets and RBC has been dropping in extremes and he has had to have a Red Blood and platelet transfusion in the last 24 hours. Then if that isn't enough he has a strange rash or something spreading over his body. He is having a hard time walking. He just has not been himself.

There was a child at the McDonald house and the ward where Caden is that was diagnosed with Shingles. So now Cameron is going to be on isolation and Caden has been exposed. We are hoping that the rash forming on his body is not shingles!!! Caden has absolutely no immune system and cannot fight anything.

We have been here over 6 months now and we are all ready to be done and home. The reality is though we have several weeks left. Please pray for us all.

Waiting, waiting, and more waiting

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!

Final Round

This was written yesterday:

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 drs 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.

We're roundin' 3rd!!!

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 across the globe praying for us. Strange how we have become part of the lives of people all over the world. Thank you.

Monday Was A No-Go

Caden was supposed to go back inpatient and start round 5 on Monday, but his platelets were too low. He has not fully recovered enough to start the next round. Friday he has another lab and Dr appointment to check his counts. If the platelets are high enough he will be admitted on Saturday for round 5. If they have only gone up a little or if they have dropped again, he will have a bone marrow aspiration. They will be checking to see if the leukemia has come back. It was the last thing I wanted to hear from the Dr yesterday. It was like taking a blow to the gut. I am trying to prepare myself for that news, but after already going through so much I can't even imagine. I just want to go home. So please pray for us on Friday. God's will be done.

Still Out

Well, we were only supposed to be out of the hospital for five days, but his counts were not high enough to re-admit for round 5. In fact they were so low he almost had to have a transfusion while he was out. The plan is to start round 5 on Monday. We have had a very nice break off. We haven't been able to do that much because he is not supposed to be around large groups of people with his counts this low. He has labs and a clinic appointment tomorrow morning so we will find out if they are high enough to be able to take him to the zoo finally!!! Other then his counts taking a long time to recover, he has been doing pretty well. He is eating and drinking fine, well better at least, no weight loss. Round four was the harshest on his body but round 5 is no piece of cake either. Round five will take the longest to recover from. Probably a total time period of two months. I was hoping we would be out of here by the end of June or early July, but it's not looking too good for that. It really does feel like we have been here much longer then we have, and the time left seems like an eternity, but we'll make it through. I am looking so forward to going home!!!!!! I never thought I would miss Alaska as much as I do. Please continue to pray and I will get some new pics out soon. God Bless!

We're out!!!!

After 41 days inpatient we are out for five days. Caden had another CAT scan on the 26th and everything looked much better. He does have some nodules in his lungs but they do not think they are tumorous. The doctors think it is a fungal infection, but that in itself is deadly for children in Caden's position. We get a break for a few days but he has to stay on a couple different meds including one for his lungs. I also found out that he will have to stay on that med for his lungs for six months after we get back to Alaska and have periodic CAT scans. Thank goodness for health insurance!!!!! His counts were barely high enough to get out, but they took him off of his IV nutrition yesterday and since then he has slowly began eating on his own. Excellent news all around. As soon as his counts are up enough we are all going to the Zoo. A promise we made him as a late birthday present. So that's all the good news, but unfortunately there is also some bad news. When he goes back inpatient on Tuesday, he will probably be scheduled for a lung biopsy. They want to be sure it is not tumorous and verify which fungus it is so they can treat it with the appropriate anti-fungal medication. We were doing so good and I thought we might even get home early, but this last phase has set us back some. It's looking like we will be home by the end of July now. Oh well, when we are meant to be home we will get there. Please continue your warm thoughts and prayers!!!! After the Zoo trip I will put out another update and some new pics. Stay tuned!!!

Some Good News

Caden had a second CAT scan on Monday and it revealed that the combination of meds he is getting is improving whatever it is he has. He has been fever free for a couple days now and has been able to eat a little bit here and there. Mostly bland boring stuff, but it is like fine cuisine to him! Still no budge on the blood counts. Once those come up he should be able to kick this faster. His spirits are better and he definitely has more energy. The only problem with that is he is so weak it is difficult for him to walk and even more difficult for me to see my baby like that. He had a decent birthday, as decent as he could have with the way he was feeling and being in isolation in the hospital. I was hoping to be back in Alaska by July but this has set us back some. Bummer, we are all so ready to be done with this. Thanks to everyone who sent birthday wishes, cards, and gifts. I have pictures of him opening them but I do not want to post them. He does not look like the Caden you all know. He looks much better now, so I have included some new pics. Please continue to keep us in your thoughts and prayers.

Finally...Something!!

Well, it is not the best news but at least there is news. Results are back in from Caden's CAT scan and they found a couple of things. There was cloudiness in his lungs which indicates an infection and something in his lower colon. They have put him on two more antibiotics and one more anti-fungal. I have no clue what the grand total is now I just know that his IV poles (yes that's plural) are looking more and more like a science project every day. Hopefully with this info they will be treating what has been ailing him and he will start to get better. He is still not eating, in fact now he has been ordered not to eat. He couldn't digest his apple juice today. He threw it up. I guess we wait until the antibiotics and anti-fungal kick in and his counts come up. We really need his counts to come up, that is what will fight this. Please continue to pray and send good thoughts our way! Oh, and no pictures right now, I don't want anyone to have to see him like this. It is heartbreaking and I don't want to share that.

So Frustrating

Well, the good news is his results came back negative on the PCP Pneumonia. They are still waiting on the cultures to see if there is any other infection in the lungs. The bad news is he still has the high fevers, diarrhea, cough, and he is not eating and they do not know why. This has been going on just shy of two weeks now. His counts have still not recovered. For that reason he is going in for a CAT scan this morning. They will be checking his sinuses, lungs, abdomen and intestines for infection. I wish they would figure it out already and just make my baby better.

Will this ever end???

Thank you all for your thoughts and prayers. He made it through the procedure but had some nose bleeds during and after. The fluid removed from the right lung was milky so they think he may have PCP (some kind of pneumonia) but will not know for sure until the cultures come back sometime within the next 24-48 hours. The good news about this is if we can pinpoint what is causing his high fevers we can treat it specifically instead of the broad antibiotic they are using now. They continue to give him platelets daily – today he received a double transfusion due to the nosebleeds. He has a fever of 104.4 right now which they say kills the platelets they are giving him. Because of this they have started him on another medication which stops the pancreas from killing the platelets. He is breathing better tonight than he was this morning but he still has oxygen flowing next to him. He doesn't like the mask - can't say I blame him. Thank you as always for your thoughts and prayers. As soon as we get any results I will put out another update.

Prayers Needed

There is a problem with Caden's breathing. He has had a very high fever for over a week now. He is not eating and drinking. He has severe diarrhea and is still throwing up. He had an x-ray last night of his lungs and it looked pretty good. However this morning he was having a hard time breathing and he had to be put on oxygen. He will be going in this afternoon for a procedure. They will insert a tube into his lungs and then squirt saline solution into them and take a sample of the fluid. There is always a risk when anyone goes under anesthesia, but Caden is at an increased risk for bleeding and infection because his counts are so low. They think he may have an infection in his lungs, possibly PCP pneumonia. Please think of Caden this afternoon and if inclined say a prayer for him. We need it. Thanks.

I Wish I Could Make It Go Away

I am back in Seattle with Caden. I got everything done that I needed to get done while in Alaska. Unfortunately what we thought was a breakthrough with Caden's health was not. In fact he has gotten worse. He is not eating or drinking, he has been running temps between 104 and 105, and he has severe diarrhea. The doctor's are not sure what is causing this. There is no bacteria growing in his cultures. They have no idea what antibiotics to give him or how much. It is so hard to see your child like this and even harder when there is no answer for it. His birthday is tomorrow. He will be 4. I can't ask for anything more for mother's day. My baby made it to his next birthday. I only have one other request and that is for prayer.

Quite a Scare

Well, we had a pretty good scare. Caden was doing so great with the 4th round. Better then anyone expected. Then he started running a high fever, throwing up, not eating and drinking. He had gotten a blood infection. Not sure exactly where it came from, but it was bad. His Temp ran from 104-105 for three days. He was almost moved to the ICU. It was very scary, and he was a shell of himself. I pray that no one has to see their own child like that. He was on several different antibiotics and he was not responding. Finally something is working because his fever has broken, or so we think. His counts have not started to come up yet. In fact the fever has wiped out all of his platelets. He has had several platelets and blood infusions since this infection. Thank God for all the people that donate blood. He lost a significant amount of weight so he is now on IV nutrients. He is starting to drink again but he is not eating. We are so near the end of this I can hardly wait!!! I am in Alaska right now, just for 2 days. It is such a tease to be back in my home and I am not able to stay. It is weird to be here with Cameron without Caden. Duty calls though, several things I had to resolve. Caden is in good hands with my Mom. Please pray for us, for a quick recovery and an uneventful 5th round. One more and we are done!!!

Blue Thunder...ick!!!

Not much to report. Still in the hospital and still alone. My Mom and Cameron will be back this Saturday. Caden is finishing up the chemo drug referred to as "Blue Thunder". We had his anti-nausea meds increased so he has done very well in that area. He is eating a little bit, but he could be doing better there. So far the most noticeable side effects are his mood swings and he is losing his eyelashes and eyebrows. After he is done with the Blue Thunder then he has a dose of the test study drug. This drug has been tested in adults with AML and it has helped them from relapsing. So now they are trying this drug in children with AML and Caden was chosen as a candidate. Hopefully this drug will keep the Leukemia from coming back. He had a dose in the first round and now he will have another this round. It seems like I have been here a year, it's hard to believe that it's only been four months, and a few more to go. Thank you all for your continued thoughts and prayers.

We're back in...

Well...we had a few days out. They consisted of the park, a few stores, playgrounds, and a ton of McDonald's!!!! (at least he was eating well) Now we are back in and have started Round 4/5 (Intensification II). This is supposed to be the toughest of all 5 rounds. Today and tomorrow should be ok, it's Sunday through next Saturday and after will be the worst. Unfortunately my mom and Cameron will not be back until next Saturday night. I think this time I need some prayers, I am scared, and as always continue to pray for Caden. He is so amazing. So strong. He doesn't question anything he just goes with it. He has remained so positive throughout all of this. He is so loving. I wish more of you could spend some time with him, but I do understand that life doesn't always cooperate. Thanks to all who have visited. Thanks to all who have sent letters and care packages and cards. I don't know that you all know how very much that means to both of us. You should see his face light up and hear his little voice when he says "I got mail!!!!". I appreciate all the calls and messages I have received and if I have not responded it does not mean that I don't care, I care about each and every one of you. I just don't always have the time or energy to respond. God Bless all of you!

Over Halfway Now

Thank you everyone for your thoughts and prayers. Caden is doing so much better. He is still on antibiotics for his infection but his fever is gone and he is eating and drinking again. It was a miracle. After I sent out the last update, he sat up on his own and said he was ready to take the Tylenol. His counts are recovering and he should officially be done with round three on Monday. They will discharge us and he will get a short break from the hospital before starting the most dreadful round. Intensification II (round 4) will by far be the hardest. On all of us. Unfortunately I am alone again. My mom and Cameron had to go to California for a few weeks. I did it before I can do it again. I have made some really awesome friends here offering moral support. A good friend from California is flying up tomorrow for a visit also. I feel so blessed to have such wonderful friends and family. I hope everyone is enjoying this nice spring weather (Alaska contacts excluded, haha). I have not been able to get out much but I can still enjoy it from the window in his room. We will be able to get out some once he is discharged next week. Please continue your prayers and warm thoughts for us, they are all greatly appreciated.

Prayers Needed

Well...things aren't so good. Caden has come down with two different types of strepp. Normal types but for someone with no immune system, not good. He is on two different antibiotics. His fever is up to 104 and he can't keep down anything to reduce it. He is not eating or drinking. His throat hurts. They are worried about his kidneys. This is day 2 of these things. We need the power of prayer. So please, when you read this, stop what you are doing and pray for him. His little body can't fight this on it's own.

Finishing up round three

Not much to report since the last update. One of the first nights in the night nurse messed up and gave him an antibiotic he is allergic too. Praise God he was on round the clock benadryl for something else or it could have been a lot worse then it was. Even still he vomited, broke out in a full body rash and a high fever. He is doing much better now. Easter was ok. Nothing special. I ordered a pizza. Very out of the ordinary for our normal easter dinner but caden really enjoyed it. We are still in isolation until April 10. Waiting for his counts to come back up and then we will get a short break from the hospital before we start the most intense, dangerous round. Please continue your warm thoughts and prayers.

Round three....Intensification

Well, it's intense alright. The dosage of the chemo in this round is 10 times the amount more than the previous two. We are back in the hospital. We were admitted yesterday. The fevers are starting and they have forewarned us that he will be very ill. 10 times the amount. His poor little body. I am more scared then I have ever been. He will also officially be on isolation tomorrow. Happy Easter. He won't be able to leave his room for 20 days. Just in case, since he was exposed to chicken pox, they want to make sure he doesn't expose anyone else on the ward whether he has them or not. It feels like lock down. It is lock down. Regardless of the circumstances I plan to make this Easter as enjoyable as possible. When all of you are enjoying your family and Easter dinner tomorrow, please remember to keep us in your prayers.

We are out...but still waiting

Caden was supposed to go back inpatient Monday or Tuesday. That's not going to happen. He had an outpatient clinic visit on Thursday. He had another LP (lumbar puncture) to get more marrow and a dose of chemo into the cerebral spinal fluid. This will be done in anticipation of each approaching round.

When he was in clinic another family came in and one of their children had chickenpox. He was exposed. He had the vaccination for chickenpox some time ago, but between the leukemia and the chemo all of the antibodies are gone. He is very susceptible. So now instead of starting intensification (round three, and yes it is as bad as it sounds) he has to go in tomorrow for a special infusion of blood from donors that have the antibody he needs. So we will sit in clinic for about 6+ hours while he gets that. It is not to prevent, it's too late for that, it is to give him a fighting chance with the onset of chickenpox.

Then we wait some more. Wait to see...... if from 72 hours from his special infusion he is chickenpox free, then he will go inpatient and start intensification. Round one and round two were referred to as induction, introducing the poison into his body. This round, they add more drugs and the dosages are increased. Watching my baby through the first two rounds fight for his life was sooooo hard, now it's going to get even worse. I can't even imagine that, but it will. Pray for my baby. In case you don't know his name it's Caden John, and if he makes it, he will be 4 on May 11.

God be with us,

Schelly and Boys

And we wait...

So...a couple more weeks in the hospital and then he should have a few days off at the McDonald House. This is the most boring part, but no news now is good news. Caden doesn't really have much of an appetite and he's not eating very healthy, bu the Dr.'s are only concerned about him getting the calories. They aren't concerned with where they come from. At least he isn't losing weight this round.

Caden was very excited to see his brother. Although they have their sibling rivalry moments, they are good for each other. Actually Cameron is very good at encouraging Caden to eat and drink; partly because Caden sees Cameron doing it. You know the food on someone elses plate always looks better and Cameron is very good about sharing!

My mother of course is the biggest blessing of all and I just hope one day I can do as much for my children as she has done for me. The reason I am able to stay strong and overcome is because of her.

So far so good. I am worried a bit because for the third induction they will be increasing the dosage of chemotherapy. He had a rough start for the second induction, severe allergic reactions and fevers, and the dosages were the same as the first induction.

I am also concerned because I only have two more pay periods of paid leave left and then I don't know what I will do. I am worried I will lose my home and car and then what will I take Caden back to when this is all over? I know though that those things are just "things" and somehow either way it will all work out.

Please continue to pray. I have placed all of this in God's hands and trust that we will be taken care of.

Schelly

Round Two

Well...he finished the chemo yesterday for this second round. Now we wait, and wait, and wait.... We will wait again for his counts to drop and then rebound. Unfourtunately because he was having fevers again and an allergic reaction to the chemo, we have to stay in the hospital until he is safe to go to the McDonald House. I guess that's not a bad thing, but the cafeteria food sure is!!!

I am back in Seattle now and Cameron is with me. Caden was so happy to see his brother and this will be very good for both of them. Cameron should start school either tomorrow or Wednesday. He will attend the Hutch School. A special school for cancer patients and their siblings. Very, very low teacher to student ratio so he will have a lot of one on one and for that reason he will have 4 hour school days.

So we will finish up this induction and then 3 more to go. The chemo he recieved this time was the same as the last round both type and dosage, but his little body had a rough time with it. It makes me wonder if his little body can take 3 more rounds. From here, the next 3 rounds will have new drugs added and the dosages increased. I am scared. Last Tuesday I heard words from my child I never want to hear again. Knocked the breath out of me. No parent should ever hear their child tell them they are dying. It was scary. Please continue to pray. We need it and it's helping more than most of you probably know.

I just want to send out a special thank you to all of you that have been supporting me through this emotionally. I am able to stay strong because of all of you. My new friends here that take the time to visit Caden and talk to me, and the ones in Alaska that write and send care packages, and of course my family in California with their support. It really does mean the world to me. The friends that took the time to visit with me when I was in Alaska the last few days, will always have a special place in my heart.

Thank you all for your love and support!

Schelly, Cameron and Caden

FREE at last...sort of.

We're free, we're free!!!!!!! Well, for a few days anyway. Caden's counts came up high enough to be released. They are still not in normal range and he is at risk, but not high enough to be hospitalized. So we will be at the Ronald McDonald house anywhere between 3 and 5 days. That is if he does not get a fever and/or there is room at the hospital. They have been at capacity and have been running out of room. A few days ago they moved us from our private room to a shared room. I don't know how many of you have shared a room with a strange family, but I am very sleep deprived. It's nice for Caden to have a change of scenery. He was able to breathe in fresh air today for the first time in over a month. The things we all take for granted.

I will be flying up to Alaska at the end of this month to get some things and most importantly Cameron! He will be coming back down to Seattle with me to finish up first grade and the start of summer. It will be nice to have both boys together and my Mom will be here to help. Oh, and don't ask exactly when. I'm not telling. I'll just show up!!! I'll only be up for a few days and I will have many things to accomplish. If I don't get to see some of you, I am sorry, but I will be back for good hopefully by the end of July.

Please continue the thoughts and prayers, we have much further to go. They are helping and appreciated more then you know.

Schelly

Haircut

Ok...the deed is done. The hair was coming out fast and freaking him out. Not to mention it was bothering him waking up in piles of hair every morning. His head has been very tender, so i did the best i could. He wouldn't let me actually touch his scalp with the clippers so the job i did....well i got the job done. Sort of! It's all good though cause the rest of all the little hairs left will fall out. It would need to be supersoft with no harsh seems on the inside. Other than that is has been pretty uneventful. He has a runny nose and if it gets any worse then he will be put on isolation for 5 days. :( He is eating well and drinking well. Until last friday night anyway when my mom decided to let him eat the frosting off of two cupcakes and then he yacked a little while later. Thanks Nana. Actually it was just a side effect from the last LP (chemo in the cerebral spinal fluid) he had for this 1st course. So now we sit and wait. His counts will go up and down for the next few weeks and hopefully by the end of the third week they will be up enough to start the next course. Keep the prayers and warm thoughts coming. My mom left on saturday and will not be back for three weeks. This will be the hardest three weeks for me not only because I will be alone, but he is so immune supressed that it will be a tough battle to keep him from getting sick. Thanks

Well, so far so good. I guess. For a child going through chemo anyway. His spirits are high right now. The doctors are telling us that he may hit an extreme low soon. Hopefully his little body will recover and he'll be strong enough to move on to the next course in 2-3 weeks. At that time we'll have a better idea of whether or not his body is responding well to the chemo. I guess at least we are getting some sort of response, but not the good kind. Extreme hair loss and 45 min nosebleeds. You know, we were forwarned about the hairloss, but I expected it to be more gradual. It's coming out so fast and he is a little freaked out about it. Later today, if he'll allow us, we are going to shave his head. Once that is done I will post the before and after pictures.

Keep the prayers coming and God Bless all who are keeping us in their thoughts and prayers!

Schelly

Chemo (First Course)

Actual Update 17 Jan
Just wanted to let everyone know that Caden is finishing up the chemo portion of his first course of treatment. He will now have a recovery period. His treatment is made up of 5 courses. Each has about two weeks of different chemo drugs and then the remainder of the course is when his cell counts drop dangerously low and then hopefully recover. After this first course is done in about three weeks, we'll have a pretty good idea if the chemo is helping. If his cells recover well enough then we may have a couple of days where he may get to stay at the Ronald McDonald House. Then he'll go back inpatient for the next course. If his body does not respond to the chemo, that's when we will look at a bone marrow transplant or alternative medicine. I have had a lot of people offer to have themselves tested for a match for Caden. At this point, his likeliest matches are myself and Cameron. Other then that the dr's have advised that there is a pretty large database of caucasian donors and if it comes to that then we shouldn't have a problem finding a match. If we do, I'll let everyone know and the offers will be gladly accepted. Hopefully it never gets to that point. People have also inquired about visiting. That's fine with me as long as they have no sign of illness. His immune system is extremely weak and he is unable to fight anything off. Even a common cold could be fatal, so please keep that in mind if you are thinking about visiting and if you are sending anything please make sure not too many people have handled the item and that it is germ free.

Seattle Childrens Hospital

Actual Update 11 Jan
The drs have adjusted his antinausea medicine and he seems to be keeping a lot more down. He has been in a very happy mood the last two days and he even rode a bike around the ward today! Of course I had to follow closely behind guiding his IV but it was still awesome. We also played the lego star wars game on the Nintendo here. Embarassingly enough to admit my three year old is better at the game then me!

Ok, bad news, the dr told us today that results came back on the last spinal tap they did and there are cancer cells present in his spinal fluid. Hopefully they can catch them before they affect his brain. So this means he will have to have more chemo in his spinal fluid. Probably on Monday. He will be in a lot of pain again and he will have weak legs for a couple of days. We'll get in a lot of bike riding until then!!! Thank you for all of your continuing support and prayers!

Purpose of this Blog

Caden is three years old and was diagnosed recently with leukemia. He and his mom were medically transported to the Children’s Hospital in Seattle. His older brother Cameron joined them 6 weeks later. They remained in Seattle for 7 1/2 months while Caden received treatment. This blog chronicles his treatment.