Tuesday, October 26, 2010

Hair?


Hair is a funny thing. When Critter was first diagnosed they started talking about side effects of chemo. Of course hair loss was top of the list. I remember thinking "who cares if he loses his hair tell me you can cure this and he will live!" We joked about how, because of my employment, I had made sure Critter had a round head and now he could show it off. I remember the first day I realized he was losing his hair. It was about 2 weeks into the treatment and I had gotten over the shock of my kid having cancer and I was just hanging out with my son in the hospital. His hair loss was really hard for me. It was an outward sign of the destruction taking place inside. We hadn't experienced a lot of sickness yet from the chemo and I think I could almost tell myself that he wasn't getting chemo, he never had cancer, he was just a little sick and he would be better soon and heading home. When his hair started falling out it was a deep reminder of what I was putting him through. It was reality of what he had and what we had to do to save him. To me it was heartbreaking.

In the months that followed I loved his bald head. At first I thought he just looked bald, then the cancer look became more apparent. Compared to other kids you could tell he had cancer. I loved his bald head. I loved to rub it, snuggle with it and I thought he was cute bald. Now when I see other cancer kids with bald heads I want to give them a hug. I know what they are going through and how tough they have become. I am so endeared to this little bald community I can't find the words to express it. I love them.

Now Critter has slight peach fuzz all over his head! To me this means the renewal of life, the signs of health returning and although it is now fall and almost winter, spring has returned to our house and with it joy and happiness! Critter has gained more weight at home than he did his whole six months of treatment. His color in his cheeks and face is pink instead of a pale grey. Last week I got the results of his final bone marrow aspirate. The doctor called and told me, we have had 3 lab specialists and 3 doctors review your results. No cancer cells were found anywhere in his marrow! I couldn't thank the doctor enough!

Tuesday October 26, Today, we will get his line removed. I will post pictures. To us this is the final step in our treatment! He will still be on one oral antibiotic for 2 more months as a precaution. The docs say it will take a full 3 months to get all cells at normal levels again. Critter will go back every month for the next 2 years for a check up. They will listen to his heart, weigh him and take one small blood sample, a CBC to make sure the cancer has not returned. The savior truly prepared us and carried us through the last six months in some ways I can say look here is the savior in my life, in other ways I just feel it and know it but could never explain it. I give thanks nightly for the savior carrying us through those difficult times I also pray with every fiber of my being that it doesn't return. I pray that it is not my trial to loose a child. With every bruise I worry. Is it back? Every fever in my mind is a major infection. Should I run to the hospital? I hope time silences these thoughts.

I have spent all week trying to get a good picture of Critter's newly growing hair and I can't get my camera to focus on it so alas we have pumpkin carving pictures of the older boys. I promise to post tomorrow night with pictures of Critter and his clean chest.

Tuesday, September 28, 2010

Going Home for Good!

At long last we get to go home. We pretty much begged the doctors. They finally decided it was ok to go as long as we were really careful and went home on IV antibiotics. We were so excited. The staff came in a sang us a farewell song. All of the people you see there (and many more) have taken care of us at one time or another. All of the staff have become a second family to us. They were all so excited for us it brought tears to my eyes. In fact I was teary the whole day. Randomly wiping my eyes at the thought of being done. We did it!

> video

This is the cancer bell. It is center to all of the "pods" that the rooms are on. We would walk by it time and time again waiting for our turn to ring the bell! In case you can't read it it says, "Ring this bell, three times real well, its toll to clearly say, my treatments done, this course is run, now I am on my way!" The ringing signifies hope to all the other patients. Its tolling is loud enough to be heard in any room. When someone rings the bell you stick your head out the door and cheer for someone that has won their fight! It is a clear statement that you are joining the ranks of cancer survivors and will not be coming back to these halls! Critter wasn't sure what to do but I had to wipe tears away as I filmed this.

video

There are some statistics that terrified me. Because I was afraid of these numbers I rarely spoke of them even to Jason. Current cure rates for AML pediatric patients are 50%. Half. There was a 50% chance they couldn't cure this. There is a 6% mortality rate while in treatment. That means that 6% of AML patients die during treatment. The drugs are really tough on them and sometimes their bodies can't handle it. Usually they die from an infection that doctors couldn't control. When Critter was really sick during his fourth round this statistic wouldn't leave me alone. If we survive treatment we get to add 6%! Ringing this bell meant that we have a better chance of keeping Critter forever! It meant an extra 6%! When your trying to pass the test of life 6% is a huge number! With Critter's favorable chromosomes the latest studies would give him a 74% chance. So with chromosomes and making it through treatment the docs have given us an 80% of a cure!


With our 80% we hit the halls of the hospital for the last time! Critter has gotten used to his mask and will wear it sometimes. Once his counts recover completely we can ditch it for good! For the next few weeks we will have labs drawn and they will monitor how he is doing. Once his labs recover completely (they say 4-6 weeks) they will pull his central line. It will be an outpatient surgery to pull his line, but they say it is really minor. Once his line is healed he will be a normal kid! He can go to church (just in time for nursery!), he can take a bath, he can wrestle with his brothers! We will be going back every month for the next 2 years for labs and clinic visits just to make sure. Usually when they relapse it is in the first 2 years. After 2 years the chance of a relapse is really low. If he goes five years without relapsing he is considered cured! Most Oncologists will see their patients yearly until they are 18! Looks like we have made some lifetime friends!


On the way home Jason and I just kept saying "I can't believe it. We made it. We're done!" We have taken it day by day for so long not being able to face what might be in the future, now that we are done we can't believe it! When we arrived home I started crying again. Our wonderful friends had put up a banner welcoming Critter home! On the back of every card were notes from different families with words of love and encouragement! We would have never made it without the support from so many people! I know I have said that so many times on this blog but it is so true! I don't know what I would have done. I was always so confident that my other kids were happy and well cared for no matter where they were. That was priceless! We have had so many dinners brought in to feed my family. We have had people call and drop by. We had the Critter walk that paid our cancer bills. We have so much love and support I couldn't possibly ask for anything else! Thank you for everything!

We are so excited to get our household back to normal. Critter is adjusting to sleeping in his crib again. Luke and Dallin are adjusting to doing jobs and homework again. And Jason is actually going to do his paper work for work again! I am just so excited to be home and be part of it. I think my only regret would be that I did get a lot of books read at the hospital and I don't get as much time at home. Oh well I really don't need to read that much anyway. I will keep blogging to follow up on his care for a little bit but I'm sure it wont be as frequent. I hope it will be boring at my house. Thank you for joining us in our journey!

Thursday, September 23, 2010

Still Here

Well we are still here. I thought for sure we would be home by this weekend but I am beginning to believe that it probably isn't going to happen. His white blood cell count was 0.1 for a little more than a week. On Sunday it jumped to 0.2. Today it is 0.2. As you can see we are not making any progress! His WBCs are usually at least a whole number before they start talking about letting us go. He has some mouth sores that are pretty bad this time. Usually he gets mouth sores and then his counts come up and they heal. When your counts are low your body cannot heal itself. So his mouth sores are not healing this time and I think they are bothering him. He is also really bored. When Jason comes up this weekend I am going to have him bring some new toys. With the light at the end of the tunnel it is torcher to wait and wait for the labs to get better. I feel like screaming! I honestly thought we would be out sometime this week and now I am arranging another week of no mom at home.


He is happy most of the time even when he is being a non-compliant patient. When the docs come to see him they use the otoscope (the little light on the wall that docs will use to look in ears or eyes). Critter has figured out how to take the top off. A doc will say open your mouth and he will take the top off the otoscope and hand it to them. They aren't sure what to do its kinda funny. He is also refusing vital signs. They put the blood pressure cuff on his leg and he shakes his leg until they take it off. We are bribing him with candy and he knows it. He will only sit still if you hand him candy first and then only for one set of vital signs. If you didn't get a good reading the first time oh well he is not going to let you try again. Sometimes people look at me like, "do something" but I don't know what I'm supposed to do. I can't pin him down so they can get a blood pressure, he would scream and throw a fit and the blood pressure would be awful. You can tell who has children and understands this fact from those that don't have kids and think you can force everything. It is painfully obvious which staff members have children and which do not. It is also comical at times. One resident asked Critter to tell her where he hurt. I wonder how long she has been doing pediatrics? Anyway dinner tonight was french toast dipped in chocolate pudding! He ate more dinner than usual so I didn't care how messy he got!

Saturday, September 18, 2010

Luke's Touchdown!

Well I get my weekend off from the hospital. I get to enjoy the sun and a little action on the football field. We were so proud of Luke we had to post this! Enjoy!
video

Friday, September 17, 2010

Not out of the woods yet.

Well just when we thought we were done Critter got sick. Thursday morning he woke up and had his bottle. I told the nurse he felt a little warm. She checked a temperature and it was higher than his normal but not considered a fever yet. He went back to sleep (never a good sign), and soon enough he was brewing a fever. We started all the usual things, blood cultures, chest x-ray, antibiotics etc. He slept most of the day (on me of course). This time we didn't have the big blood pressure drops or anything that serious. This morning he woke up feeling better. He still had a fever but was acting awake and happy.

The cultures showed that he had a form of Strep. This is the type of bacteria that we all have on our skin but because he has no immune system it has entered his blood stream and is making him sick. This is the most common infection that oncology patients get. It is also a very serious infection. The doctor said he is doing really well for having this bug. He is still in danger of dropping his blood pressure or acquiring Strep pneumonia (which he is already showing the beginning signs of). So if we can stay here instead of going to the ICU he will be doing really well.
This might delay our trip home a little. I'm hoping by just a few days but that's the best case scenario. We can go home on antibiotics but he needs to not have a fever for a few days and have a clean chest x-ray. Well it gives us something to work on.

Good points...I showered today...he is acting better...his head is healing...we have been blessed with so much I'm sure a few more days in the hospital is bearable...!

Saturday, September 11, 2010

Done, done,done,done,done!



We are so excited!!!!! We have been admitted for the last time. When we were first admitted back in April round five of chemo seemed ages away, but here we are, Critter was given his last does of chemo on Thursday morning. I can not tell you how happy we are to finally be done with that!!! We are also done with things like eye drops and diaper changes every 2 hours through out the night. We also have stopped his nausea meds too. So now all we do is wait for the counts to drop and then rise and then we go home. The only thing that would make this round the most perfect round ever is if his head wasn't so horrible. Almost every drug they give him from the chemo to the antibiotics makes him very sensitive to the sun. We were home on Monday and did alittle yard work. Critter was outside with us, he had a hat on but would take it off every once in a while. We would see this and put it back on him. He was outside for maybe 45 minutes but in that time with brief moments of sun his head got burnt and blistered. Well blisters pop and ooze and peel and bleed and are nasty on a kid with chemo in him. Needless to say the docs weren't very happy. We now are seen by our usual docs and nurses and now dermatology and the wound team. Despite this he is doing very well and we are counting the days until we are out of here.

Saturday, September 4, 2010

September is Childhood Cancer Awareness Month

September is Childhood cancer awareness month. I stole these facts from a friend's blog. I was never very aware of childhood cancers until this happened to me. Even being in the medical field I shied away from cancer kids. Why do we do that? I now have a love of bald heads. I know these kids are just like any other kids. They just spend a lot of time feeling like crap. I have also heard all of these facts from doctors themselves. Its so scary. Everyone knows about breast cancer but not many people think about kids getting cancer. I NOW think cancer is something everyone should at least know exists. So here you go, my attempt to make people aware of childhood cancers....

Cancer is the #1 cause of death from disease in children ages 1-19 in the U.S.
Every school day, another 46 children are diagnosed with cancer
Only 3% of cancer research money goes toward childhood cancers
In the past 35 years, ONLY ONE new cancer drug has been approved for pediatric use.
Since children can handle much more chemotherapy than can adults, most treatments are little more than mega doses of adult cancer chemotherapy treatments. The results of these high doses of chemo on children is a higher rate of secondary cancers. (Which means they live the nightmare of cancer more than once.)
Childhood cancer occurs regularly, randomly and spares no ethnic group, socioeconomic class, or geographic region

Back and Forth


One more time! Right? Well round five is a little different. We do 2 days of chemo, go home for 5 days, then back for 2 more days of chemo and count recovery. We went in on Tuesday (Aug 31) and since we only went for 2 days I didn't bring the computer. I told Jason to make a post but it didn't happen sorry. Anyway, Tuesday, chemo, by Wednesday morning he was throwing up everywhere. Bigger doses yet again. The good news is that they are giving him a steroid with his chemo to try to prevent the rash. So far it has worked! The skin isn't tearing, no blisters, no burning! He does look a little splotchy but hey we take what we can get.


Tuesday and Wednesday chemo. He got his last dose on Thursday morning and then at 42 hours (which was actually 43 hours because pharmacy was a little slow) He got a chemo shot. A mean chemo shot. They say it stings pretty bad. All I know is Critter was really unhappy for a while. They kept us for another hour to make sure he didn't have any reactions and then sent us home! Now that's the kind of chemo I can handle! I made it home just after the kids got out of school! I was worried that Critter might be sick at home but he has done great! We continued nausea meds until Friday morning and gave him an extra day of steroids just to make sure. On Thursday Critter slept in until 9:30! Its kinda sad. He is more comfortable at the hospital then he is at home. All last week we fought him on going to bed or down for naps but as soon as we were in the hospital he slept great! Friday morning 6:45 am he was up! I guess I should be thankful he is comfortable at the hospital.


The plan is to go back into the hospital on Tuesday and we will probably be there about 3 weeks. The pics are from this week in the hospital and last week we had family pictures. Somewhere in the middle of all this we are finding time to send my brother on a mission. I don't know how I will function without him. He has been the nanny sent from heaven, taking my children at my beck and call. Luke spent half of his farewell behind a couch crying because he is going to miss him so much! Needless to say he is an essential part to our family and I'm already counting the days till he comes home.

ONE MORE ROUND! WAHOO!

Tuesday, August 24, 2010

Home at last!


Yeah! We are finally home! On Sunday morning I got the phone call from Jason asking me to come pick him and Critter up from the hospital! The docs had finally decided that even though our ANC wasn't up the rest of our labs were looking great. It turns out that home health can be a little slow on Sundays. So after rushing to the hospital to pick them up we had to wait around for them to give his antibiotics because home health couldn't deliver them in time. So we ended up getting home at around 5:00pm on Sunday. It was marvelous! Critter is doing much better. He is off all of his pain meds and is eating normally again now that we are at home. Maybe its just the mother in me but I think he looks a little withered and weak. This round has been rough and you can tell he has been through the ringer. I am grateful to put the past behind us and enjoy our time at home. ONE MORE TO GO!!!

Thursday, August 19, 2010

Not yet



Well here we are moving onto day 24 (not that I'm counting) and we are still waiting on the labs. Some days they move up, some days they move down. Yesterday his white count was .7 today it was .6. They want a little more proof that he is moving in the upward direction before he goes home so here we are. He took a 4+ hour nap today. I can't decided if that's good ( he is healing) or bad (why is he so exhausted?). Because he is so tired and his heart rate is a little high they are giving him blood tonight even though his HCT is a few points above transfusion level. I'm glad they are giving him blood. He just seems exhausted. He will play for a little bit then lay on my lap for a little bit. Then play then he wants to be rocked. Its kinda sad. The up side is we do lots of snuggling. He is happy (as long as he gets his pain meds). That is better too, we almost never get morphine anymore just oxycodone. All in all things are pretty good. I don't know when our labs will rise. I am expecting that one day the docs will walk in and say "hey do you want to go home today?" That's kinda how it is one day your rock bottom the next your body kicked into gear and your labs are great.



Tuesday, August 17, 2010

Recovery! Finally!

Critter must have known I was at my wits end because he gave me a wonderful day today. We moved around some of his meds and I think it made a huge difference. His labs are also starting to show cell growth. They say when his cells start growing again they will heal him and repair any damage and he will no longer need any of the meds. So better labs, less meds. His white count is only .5 right now but he is up in other areas! That means if they look good for the next few days or even as early as tomorrow we might get to go home! Critter was happy today! He played with toys, he crawled around, he ate food! He still slept a lot but that's expected. He has picked up a few bad habits though. He steals syringes out of nurses pockets and refuses vital signs unless he is eating a cinnamon bear. I am just happy he is feeling better. I'm sorry there haven't been any good pics lately. I will post some tomorrow. I'm just so happy he had a good day I felt guilty for my last complaining post. I think the Lord knew I was done. Maybe it is true that the Lord will never give you more than you can handle. I had had enough and today was a relief. I am ready to face another day and another round of chemo. One more! We are almost there!

Monday, August 16, 2010

Ohhh thats why!

Well we finally found out why they keep us for count recovery. On Wednesday Critter got an infection. They always told us they were keeping us "just in case" and I can tell you after this week I am glad we spend extra time in the hospital.

Wednesday day Critter started acting tired and upset. By the afternoon he was running a fever. They started antibiotics (3 different kinds) and gave him Tylenol. The third antibiotic was almost done going in when Critter started acting upset again. This was about 8:00pm. I picked him up and held him and he went to sleep on my shoulder. Shortly after he started shaking. I got nervous and called the nurse in. She called the doctors and before I knew it we had a team of resident and attending doctors standing around me with about 3 other nurses pushing meds as fast as they could. If you think about it a fever is an immune response. Your body's response to the bacteria. Well if you don't have any white cells to respond to the bacteria you wont form a fever. So by the time Critter's body recognized the bacteria it had spread throughout his whole body. When the antibiotics attack the bacteria it kinda explodes releasing all of its toxins into his body. This is called a bacterial shower. His temperature went from 97.8 to 103.4 in 4 minutes. His skin became a funny color because the body was shunting blood only to the major organs which meant his arms and legs became a purplish color. His blood pressure dropped dangerously low and his heart rate sky rocketted trying to keep up with everything else. He also started requiring a lot of oxygen. Basically his body went into shock.

After a few hours he stabilized and slept. More doctors came to see him and decide if he should be transferred to the PICU. Then it started again. It happened about every 3 hours during the night. It always starting with him shaking and I would call the nurses. Luckily he showed this sign first before his blood pressure would drop. It gave the nurses enough time to get some fluids in him and made it easier to stabilize him which meant he didn't end up going to the PICU although we constantly had PICU docs in his room. By Thursday morning I had spent the entire day and night in a rocking chair holding Critter. I didn't sleep except for a few short cat naps in the chair. But by Thursday morning Critter was stabilized. He slept most of Thursday and a good part of Friday. Always in my arms in the chair. He did make it to his crib at night but during the day he had to be in my arms.

He is doing a little better now. His cultures showed that it was a really bad strain of Ecoli. They are now giving him a special antibiotic to target this strain of Ecoli and he hasn't had a fever since Friday night. He is still very sleepy and very grumpy. He is in a lot of pain (I guess Ecoli and chemo equals pain) so he is getting a lot of pain meds. We have also started over on trying to get him to eat. Between feeling sick and during the past week he has had mouth sores on and off (also painful). So some days he will take a bottle and some days he wont. We are still spending much of our time in the rocking chair. My back is killing me. It looks like we will not be coming home anytime soon. Our labs are still rock bottom. The docs predict another week to 10 days. They would also like him to finish his antibiotics before going home. If he was feeling really well they said they might send us home with the antibiotics but he is not feeling well so far. Today is day 20. I have to say thank you so much to everyone that has brought dinners and taken my children again and again. Thank you for all your prayers and kind words. They are such a support. We feel so bad asking people to bring dinners and babysit children month after month but you keep supporting us and I don't know what we would do with out it. Thank you so much!

Monday, August 9, 2010

The Future


Well Critters labs are at their lowest right now. So we wait. Encourage him to eat. Watch the labs. Today is day 13. We are usually in for 22 to 23 days. One drug he received this time is has a history of dropping patients labs down for a longer time. I hope we are out in the same amount of time but if not we are mentally prepared for a little longer stay. The docs are discussing the use of steroids with his next round of chemo to try and prevent the rash. The dermatologist asked if there were other options to using the Ara-C. The option is to not treat the cancer. So he said treat the cancer, give the chemo, his skin will suffer and we will have to do our best to support him. Not the best response but I'm not about to stop treatment now.


We only have one round left! I want to just get it done as soon as possible. I want to be done with all of this. But patience is something I am working on so we will wait for the labs to dictate our future. I recently spoke with a 16 year old kid who had had testicular cancer. He met Critter and we discussed the similarities in treatments. He was treated for about 6 months. He said "it was the worst six months of my life but it was only six months and its over now". He came back to talk to parents and teens who are currently receiving treatment. It is always so touching now to meet a cancer survivor. No matter what kind of cancer. These are people who have had their lives torn from them and then they have conquered the unthinkable, they have endured the unbearable. They have risen from the depths and emerged different people, better people because of it. We hope to someday soon join their ranks.

The Present


A few days ago they started Critter on some antibiotics and some steroids to help his rash. The steroids can make him irritable but they can also make him hungry. He is eating a little more. It kinda depends on the day. Sunday he ate an adequate amount of food. Today he didn't eat quite as much. But the best news is that his rash is looking soooo much better! It is still peeling but it looks like it is healing now. Its not all better but is at least not looking worse day by day. He did fall and bump his chin and of course his thin skin tore and he now has a chin strap shaped sore on his chin. I promise underneath all those sores and rashes there is a very cute little boy! Some of the funnest news is that Critter is finally walking! I think some of his drugs have made him a little dizzy or unbalanced. He was really steady at home and then regressed in the hospital. But Sunday he started letting go of things and walking on his own! All day today he roamed around trying to get used to his legs. I am so proud of him. Even with all he has been through he is still putting one foot in front of the other. I know I have said it a million times but we are so blessed to have such a strong little boy. I think I would have laid down and given up long ago.

The Past

I am so sorry I haven't posted anything. I always try to be upbeat in my posts and I haven't had a lot of good things to write about so I haven't written. Now that I am fairly confident that I wont burst into tears over my computer I think I can tell you whats been going on. We finished chemo on Wednesday! Yeah! He had his last dose of Gemtuzamub ( a drug he previously had a bad reaction to) without any problems. We dosed him with lots of benadryl and Tylenol for the entire day and although he was irritable he didn't have any type of serious reaction.

On Wednesday he only had one bottle and a few small things to eat. He usually stops eating and looses weight for a few days. We always hold our breath and hope he starts gaining and eating before the docs notice and decide to put in an NG tube (this is a tube that would go in his nose and to his stomach. They can give feedings in it. In the NICU where I work we use these all the time. I have even put them in before but for Critter this is my worst nightmare. He wont even wear oxygen on his face I can see him pulling out the NG tube and us placing it time and time again. If the kid is throwing a big enough fit it is really hard to place a tube. It just keeps coming out their mouth instead of going into their stomach. It is awful and I don't think I could stand to see him go through that multiple times a day).




Eating aside, Critter has acquired a really bad rash. He gets a chemo drug called Ara-C. It is the backbone of his treatment. It can cause skin reactions. Critter has one of the most severe skin reactions any of the docs have ever seen. They all come in to gawk at him. (I don't really mind, in the medical field any type of unusual thing you can learn from is really interesting to see). Usually they get this rash on their hands and feet. Critter has it on his head, face and arms from the elbow down. It is just like a really bad sunburn. It blisters and peels, burns and itches, and it causes the skin to be paper thin. He is getting sores behind his ears from his ears rubbing against his head!

Anyway it is painful and irritating. We wait until he is miserable and then give morphine for the pain. The morphine doesn't put him to sleep, it puts him in a dazed, drugged out state. It makes me sick as a parent to know I am doing that to my child but the other option is pain. I have struggled this past week because I am all of the sudden so tired of watching him suffer. I haven't felt like he is really suffering until now. Usually its a few bad days and then he recovers. Since we were admitted he has struggled. I would gladly take the pain and suffer for him. I think it is harder to watch your children in pain than to be in pain yourself. Whether emotion or physical pain. This week I have been intensely aware of how our father in heaven must have felt watching his son suffer innocently. The atonement means so much more than it ever has.

Monday, August 2, 2010

Higher doses...harder times


Critter has had a so so week, he started out well but due to the increased doses of the chemo and the introduction of a new drug this round it has been pretty hard on him. For a while now his head has been very fragile, any little bump would peel skin away and leave an oozing wound, well due to the chemo again it has worsened and on top of that his entire head and also his arms are now a nice spotty red color. The docs say that this can be quite uncomfortable almost like an itchy rash so as you can imagine on top of being tired and nauseated he also is in discomfort from this rash. For so long we have been so lucky that he has been so strong but the increase in chemo doses is really catching up with us. Chemo can change the taste of food so most chemo patients will binge eating one type of food that might taste good that day. With Critter it is an eternal guessing a game to find something he will eat even though he may be starving he only wants one thing but we have to guess what it is. He is throwing more temper tantrums I think because he is not feeling well and really frustrated.

Critter has had a few reactions to drugs, like today when he cried for three hours straight apparently a reaction to a nausea med. Our list of allergies continues to grow. He had a really bad reaction to one of his chemo drugs. He will get it again on Wednesday because he needs the chemo so they will try to medicate for the reaction. Please pray for him, pray for us we can truly feel the strength of all of you and we need all of the strength we can get, we love you all.




Thursday, July 29, 2010

Admission Day

Well it's time for round 4! We had an echo at 9:00. To make a long story short I got there at 9:40. They still let us have an echo. Neat. Critter gets an echo and EKG to check out how his heart is. Some of the drugs that he is receiving can have severe effects on his heart. That's why this type of cancer is so dangerous to the elderly. Most of the elderly can not handle the treatment. Their hearts are not strong enough. Anyway, every time Critter starts a treatment with these drugs he gets an echo to make sure there has not been any damage and to make sure his heart is healthy enough to have another treatment. Results were good. It was a real struggle to keep him happy though. He woke up at 7:30 and had some water. He has to be NPO (no food) for his LP later. This is a picture of his EKG.


After that we went to clinic where he despises the paper on the exam table. He always destroys this before we even see anyone. Then the nurse comes in and draws some labs and the docs come in and discuss treatment and sign consent forms. I don't remember what time my appointment was there. I was probably late, oh well.



After that we went to the RTU. We got there at about 12:oo. Our appointment was for 12:30. Critter was pretty hungry by then and getting tired since 12 is nap time. Once there I was informed that they were running about an hour behind. We got toys and settled in. By 1:00 Critter lost it. He threw a temper tantrum and ended up crying and throwing toys at me. Just when he might settle down the anesthesiologist came in to get us. Whew put the kid out! He got an LP, bone marrow aspirate and bone marrow biopsy all to make sure there is still no trace of cancer. They usually give him a drug to help him come out of the anesthetic but I didn't ask for it (assumed they would, note to self, never assume) and we had an anesthesiologist we haven't had before so he didn't give it. That means Critter woke up MAD! After a raging temper tantrum in the recovery room I carried him through the hospital with no shirt on kicking and screaming up to our room. I'm sure they were happy to see us! I ordered him some food and me and the nurse watched in awe as he stuffed sandwich in his mouth.

So here we are again. Our room is huge!!! Much bigger than the others we have had. (I was told we have moved to the suite). And the shower is HOT! the water was always cold in the other rooms. So far A pod is the best! I do miss Sharon the woman who cleans B pod. She is really good but all in all I guess we can be happy here. Chemo was started at 10:30 Wednesday night. Just the Ara-C right now but we get some new interesting drugs this time. Wish us luck!

Thursday, July 22, 2010

NOT at the hospital

Hey its Thursday and we are NOT at the hospital. Yesterday we had labs drawn just like always and just like always they called to give us the results. His white count is still down so we get to stay home for a few more days! Yeah! We are scheduled for Wednesday to be admitted if our labs are good. I would kinda like to just get it over with but I am excited to be home. This is the only summer I get. When he is discharged again it will be the week school starts (or really close to it) so this is summer for me. The down side is he has one medication that is only good for 14 days so it expires and we have to refill it. Even after insurance it is really expensive and its a bummer because I have some left but once it expires it looses potency so we can't use it. Oh well.
At least it is summer, no one is sick, and Critter is almost walking! He takes about three steps and then sits down. I'm hoping he will be walking into the hospital when we go back! Its amazing, when he was diagnosed he was a baby...now he is a little boy. He is climbing on everything and I wonder if it will be harder to contain him in a hospital room. Maybe I can bring a baby treadmill in to wear him out. I never thought that I would have to wear down a kid with cancer. I guess these are all good things. We are so blessed to have such a strong little boy.
I've heard that the Lord will never give you something you cannot handle and although its been tough on me Critter is obviously handling it well. It makes me wonder if this challenge was not meant for him but for me. I hope I learn what I am supposed to learn from this. I have ask the Lord over and over again what I'm supposed to be getting out of this but I never get a response. I never feel alone but he is not telling me why. I'm not sure if he ever answers that question.

Monday, July 19, 2010

Life After Cancer


Yesterday Jason and I were talking about the future. Not necessarily way in the future but things like, "this fall I would like to move some plants around." "Maybe I can start school again in January." Stuff like that that we haven't talked about in any kind of detail until now. Before I couldn't even think about the kids starting school this fall. Everything was on a needs basis. I would think about it if I really needed to. But not until then. Now there is a bright light at the end of the tunnel. We are making plans for the future. There is life after cancer. And it is a future with 3 healthy children in it! Maybe its the time at home that has made us so optimistic or maybe it is the thought of only 2 treatments left. Whatever it is we are excited to see a bright light growing brighter every day.


I love this picture of Critter because it is so typical. When we are at the hospital he is surrounded by buckets of toys. He plays with the oxygen. He has figured out how to clog it with his hand and make different pitch sounds with it. Last time we brought shake and go cars. He learned how to turn on and off the blood pressure cuff. At home he finds the thermometer. He will try his ear and then try his toes and laugh because he knows its a big joke to take your toes temperature. He is so strong and healthy. We are so blessed with such a strong kid. Sometimes he will even sit still and hold his arms up when I put the cover over his line so he can bathe. We go back in on Thursday. ECHO at 9, clinic at 12 and RTU at 1:30 for his bone marrow and Lp and then they give us a room. The worst part is he is NPO, nothing by mouth until he gets his LP. So I will spend half the day at the hospital with a starving kid. Oh well maybe we can scrounge up some new toys to play with while we wait. The good thing about that hospital is there are people called child life specialist who wander around bringing toys to kids who are waiting. They make it as comfortable as possible. Wish us luck! Round 4 here we come!

Tuesday, July 13, 2010

Back to the hospital already?

Well we thought we were home. On Sunday we noticed Critter had a little scratch on the bottom of his foot. It looked like a sliver. So I sterilized a safety pin the best I could and poked at it a little. I was pretty sure there was nothing in it so I covered it in antibiotic ointment and taped it up. Well Monday morning it looked a lot worse. One of the joys of having your white count so low is that regular bacteria that is on your skin or can get on your skin can cause major problems. So any breakdown in the skin is a site for a possible infection. One little cut, maybe only 2 cm long sent us to the hospital for 3 hours. In the end the doctor took pity on us and sent us home with antibiotics on the condition that if he spikes a fever we drive straight to the hospital. I also have to call tomorrow morning and tomorrow night to report how the cut looks. If it gets worse we will be back in the hospital. I was just glad that they didn't admit us today. I have started counting on my time at home and taken it for granted that if he gets any type of infection he gets to go back. At least we got a Slurpee out of it. On the advice of my uncle I have started rewarding myself when we have long hospital days. That way I am not resentful that I spent X amount of hours wasted at the hospital. Instead it is like oh you have to go to the hospital? Sweet that means I get a Slurpee! What you have to get an LP today that means I get to treat myself to some tapioca pudding! I have learned that little things lift your spirit the most and make life bearable.
Critter continues to handle it all like a champ. I keep waiting for us to walk through the doors of Primary's and have him start crying and throw a fit because he know what is coming and doesn't want to be there. But every time he laughs when the docs and nurses come in the room and talks like he knows it all. He is so brave. He continues to be an example to me everyday.

Saturday, July 10, 2010

3 down two to go.

Well we hit day 22 and what do you know they sent us home. We have been sent home on day 22 all three times now. Critters counts have come up very well this week and even though they are not as high as the last time we came home they felt good about letting us go. This wasn't with out obstacles though. The night Thursday night something happened and his I.V. line got put on hold for who knows how long, from this his small lumen is now clotted solid. They tried for over two hours to try to unclog it with no success, with some convincing from us and our wonderful nurse Tomoko we convinced the charge nurse to allow the home health nurse to unclog it today. So we are home to enjoy the next 13 days together.

Tuesday, July 6, 2010

How I Feel


Well one more week down and another started. His counts are down. Now we wait. I have noticed a pattern in my feelings during the hospital stays and since the most frequent question I get is " How are YOU doing?" I guess I will share how I really feel. When we first come in I am ready to fight. Ready to face another round. About 2 days into it Critter gets sick. He smells like chemo (which for some reason really bothers me, not that it smells bad but that it is the smell of the poison I am knowingly putting into my child's body. Every time it gives me stomachache). I cringe with the knowledge of how my child is suffering. It doesn't get any easier.

By about day 8 or 9 I have conquered the reality of our situation and it is no longer as heavy as it seemed when we came in. We settle into hospital life and finding sitters for the other kids. This is the easiest time for me but it doesn't last long. By day 12-14 Critter is feeling better and the counts are coming down. The hospital is easy. We sit and watch movies and try to get him to eat. The problem is at home. In those 14 days I have seen my other children for a total of 4 days. The novelty of being with friends and family all the time has worn off. They miss their mom. I miss them. It is hard to describe a mothers desire to see and hold her children. I can only describe it as an ache inside. I want to be there when their feelings are hurt or their knee is scratched. When these things happen and they call me I feel absolutely powerless because I cannot be there. The upside to this is I have noticed a bond growing between my boys. They are increasingly protective of each other. They have learned to stick together because they are the only family they have right now.
I also miss my husband. Even though we talk a lot on the phone we don't get to hang out together. We function. We plan what is going on with what kids, discuss labs, ask what doctor said what, who is babysitting tomorrow, how work was etc.. I miss having fun. I'm not saying we are having marital problems we just miss each other.

It just sucks to put it lamely. But I have worked out a routine that seems to help. Thanks to my aunt and uncle I now have a yoga mat and do yoga movies during Critters nap. Sometimes I go for a jog after he goes to sleep. I read a lot which I love. I am so blessed with such a strong little boy. He is so affectionate, always giving me hugs and kisses (which sometimes include teeth but it is out of love). He spends the third week laughing and playing with me which helps a lot. This week, as you can see in the picture, he has decided to unload the drawers that keep his clothes. We load and unload many times each day. I hope this means he will one day love to do laundry.


Another blessing my family received this week was the birth of my nephew Samuel Isaac Earl (Gerb). He is a beautiful baby. He has big hands with long fingers, dashes of dirty blond hair, and a cute baby face. When I went to visit I couldn't help but run my fingers over his perfect little chest. No rashes, no bruises, no stickers, no lines just perfect beautiful baby skin. I was reminded of how perfect these little babies come to earth. I was in awe of Gods creations and felt an increase in gratitude for the blessings I have received. Congratulations to my brother and his amazing wife. They will be excellent parents.

Sunday, June 27, 2010

Thank You!


Thank You, Thank You, Thank You!!! On Saturday we had our walk/run for Critter. It was amazing! We had so many people show up to run with us.


After the run we had games for the kids,


face painting, treats,



and the silent auction. So many people donated stuff for the silent auction.



We had hand made trucks, quilts, books, pictures, baked goods, walking sticks, diaper bags, decorations, a bike just to name a few things. Everyone was amazing. My heart was touched so many times that day. I received the table runner that the primary made and I get teary evey time I look at it. And it didn't stop. There was donation after donation. Me and Jason's jaws dropped lower and lower as we looked at the checks made out to us. We are so touched by what others are willing to donate to us. Time and money are so precious these days and we know that every item, every check and every moment spent thinking of us was done in love and we are overwhelmed by the gesture. Thank you all for everything! From the bottom of our hearts we say thank you and we love you!

Thursday, June 24, 2010

Intensification


Round 3! The first 2 rounds of chemo were what they called induction. The goal of induction is to put cancer into remission, meaning we no longer test positive for cancer. We have accomplished this goal! (I have talked to mothers here that are doing extended induction because their kids bodies are not responding well. We are very lucky). Now we enter what they call intensification. ALL patients do something different but because AML cannot be cured the same way this is what we do. Intensification means higher doses of drugs. The idea is that even though we are not testing positive for cancer there are still Leukemia cells in his body that don't show up on tests. We need bigger doses so that they are sure to kill everything.


This round he only gets 2 drugs. Ara-C and Etoposide. Last time he got 100mg of Ara-c every 12 hours. This time he is getting 10 times that dose, 1000mg Ara-C every 12 hours. It made a difference immediately. He has been really tired but it is a really restless sleep. He quit eating and started throwing up. We added another anti nausea drug to the other two he has been taking for a total of 3 meds for nausea. He is also running fevers. The fevers are from the Ara-C. He had them the first round also, but just to make sure its not an infection the nurses have to draw labs every 24 hours when he spikes a fever. I spent most of the day holding him yesterday. He felt good for about 2 hours and he played with toys. He is back on 2 hour diaper changes and 4 hour eye drops. The eye drops are an antibiotic eye drop and they sting. He hates it. It is so hard to see him be so sick. The up side is that we only have 5 days of chemo this time. I hope after we are done with chemo he will perk up and feel better. Our last dose of chemo will be on Saturday morning at 6 am. I can't wait!

Back in the Hospital




Well here we are again. We were admitted on Monday morning. Originally we were supposed to be admitted on saturday but a little begging bought us an extra weekend and the docs agreed to admit us on Monday. By 2:00pm we were unpacked, hooked up to fluids and roaming the halls. I took this picture on Sunday night before everyone went to bed. You can see why we love being at home! Bald kids are so much fun! I wonder if this works on old men to. I bet we could use the gun for them.

Thursday, June 17, 2010

RTU


Critter's labs came back and his counts are up which means it is time to move on to the next round of chemo. Today, Thursday, we had a clinic appointment which basically consists of some vital signs and a couple of doctors listening to his lungs and asking me how my week off was. The nurse came in and gave him some anzamet before the LP for nausea. Then we go to the RTU. RTU is the rapid treatment unit. This is on the first floor by the ER. Dallin was once admitted here for antibiotics when he was a baby. People who are staying for less than a day or two get to stay here. They also have a little hallway where they do small surgical stuff like LPs and Bone marrow aspirates.


We go and meet a nurse who makes sure he hasn't eaten and that we understand what is going on today. We wait while they assemble "The Team" basically the attending doc, this time our fellow (a doctor who is doing extra residency in a specific area in her case she admitted us and is following our case so we know her well), an anesthesiologist, and special lab people who handle the bone marrow aspirate. The anesthesiologist meets with us and asks again if he has eaten (I am usually asked about 6 or 7 times before the actual procedure happens)and leads us back to the back room. The room is like a mini surgical room. I get to hold him while they hook up one of his lines to fluids and then while they push in the medication to make him sleep. I have to hold his head because before the syringe is empty he has gone completely limp. It is always amazing to me that seconds later his lips are blue so I always set him down quickly and the anesthesiologist will give him oxygen and other gases to keep him asleep. I kiss him goodbye and leave until they come to get me.


At first this made me nervous and I sat outside worrying about everything. This time I came prepared with a book and a coke. I have done this almost ten times so I know everyone in the room where I left him, even the many recovery nurses. A lot of times I sit out there with other parents and we talk. Today it was a father of a three year old girl. I could hear her screaming, not in pain, but angry because she had just woken up from the anesthetic. He explained that they were in their first month of treatment for ALL. She was on steroids which among the many awful side effects, make you hungry. She had not been allowed to eat since last night in preparation for her LP and was starving. I listened to his story and was once again reminded of how lucky we are. When his daughter came out of the recovery room carried by her mother she looked pitiful. She was bloated and swollen from the steroids and was quickly stuffing crackers in her tear stained face. She will be treated for the next two and a half years.

We are so lucky. It is always sad to have something like cancer declared on your child but we are hoping Critter will never even remember any of the pain. My heart goes out to these families with slightly older kids. Many times I have chased Critter around our hospital room, tried to keep him from putting everything in his mouth and tried to get 5 minutes of peace with various movies, I have thought if only he was a few years older I could hand him something to color or we could watch movies. Then I see kids that are older and I am reminded that they will have memories of lost summers spent feeling rotten, scars with the remembered pain that came with them. At these times I am so thankful that Critter is young enough not to remember any of this. If we can stay in remission it will only be a bad memory for his parents and he will never think twice about that evil word cancer that causes so many kids so much pain.

Not Starving!


This is a picture of my fridge. It is full of food. My children are not starving. I start this post out like that so you can better understand how I felt about the story I am about to tell.
I worked Sunday night. Monday morning home health came and drew labs on Critter. After they left and the older kids had declined breakfast I put Critter down for a nap. I told the older two to be good and I put myself down for a nap. An hour and a half later Critter woke up. I heard him babbling in his room and got up to get him. On my way into his room I almost ran into Dallin who ran into the bathroom looking suspicious. I ignored him and retrieved Critter. When I came out Luke and Dallin were wispering to each other. Luke was laughing and Dallin was looking annoyed. I asked what was going on and they both went silent. Never a good sign. I pestered them with questions until the truth came out.
"Luke made me eat dog food" Dallin confessed. He what! I looked at Luke and said
"You made him eat dog food!" Luke replied, "I didn't make him! I had some and told him it was good and he should try it."
I turned to Dallin "So, was it good?"
"I almost threw up" Dallin replied, then he turned to Luke and said "See I told you it wasn't the smartest thing to eat!"
After a long conversation with Luke we came to the conclusion that it was cheaper for me to feed him with regular food instead of dog food unless he only wanted to eat once a day. Considering this news Luke has agreed to not eat dog food anymore. I feel I have taught my children something valuable here today. Its a good thing they have a mother!

Monday, June 14, 2010

Home is a healing place


Home! At last! This is a picture of us packing up to go home. We were sent home on Tuesday. I hardly slept the night before. It was like we were getting ready to go on some grand vacation. I was so excited I was even happy to pick up our expensive discharge medications. Critter wasn't sure what was going on. I think he was just happy to be let out of his room. On our way out everyone tried to put a mask on Critter which he quickly rips off as soon as he can. And we made our way home! So if we went home on Tuesday what have we been doing. Critter has loved his freedom of the house.

I follow him around and clean...

...and clean some more. He is very busy. He crawls everywhere and climbs on whatever he can. I have a small step stool in my kitchen that I kick around to help me reach things. Critter has learned he can climb on it and sit. The only problem is he hasn't learned how to climb down. He just falls face first. He loves his brothers...except when they are snuggling with his mom. The first time this happened minutes after we arrived home, he crawled over and bit me. After a few days he realized he is not the only child in the family and has taken his place in the food chain. He has also discovered Duke. He liked him before but he has decided that this animal is his new best friend. Poor Duke!

Critter chases him around all day. We are lucky that he is so patient. But what amazes me the most is how healthy Critter is. Within a few days he was sleeping well through the night and two 2-hour naps during the days. His appetite increased and he is so happy! I used to wonder why the doctors would send us home with such a great risk for such a short time. Now I know. There is a healing that is done at home that cannot be accomplished in any hospital room. There is no new medical discovery or practice that can equate to the healing power of a loving family and familiar surroundings. It is amazing to watch.

The plans for the future...well we have a clinic appointment on Thursday. If his labs are up then they can do his LP and bone marrow aspirate then. If not we will wait. They will admit him about 2 days after he gets his LP and bone marrow aspirate. We get labs drawn on Mondays and Thursdays so we will see what tomorrow brings. I am guessing that next Monday we will be admitted for our next round. But who wants to think of that! We have a another whole week at home! Critter is just a normal kid to us right now. He throw fits, he laughs and plays. He is just a normal little toddler.

Monday, June 7, 2010

The walk/run

For all of you who are interested there have been a few changes to the event. Please take a look at the blog at www.walkforcritter.blogspot.com. There has been a lot of effort put into this and we would like to say thank you so much from the bottom of our hearts for everything you are all doing and also thank you to everyone who has done so much for our family, we truly could not do this with out you all.
We love you all!!!!!

Going Home!

So to everyone that I told that the labs had not moved I have a disclaimer. I hadn't looked at the labs since Friday. Well on Sunday night I made it back to the hospital and looked at our labs and wow! They were moving up! Over the weekend Critter has started producing his own cells again which means that he is safe to go home! Last night he was up a lot crying so they wanted to keep us till tomorrow just to make sure he wasn't coming down with something and to watch a sore he has developed on his tongue. But Tuesday morning we are going home! Round 2 complete! In about 17 hours we should be on our way home! We are so excited!

I took a picture of the window washer this morning. Critter thought it was awesome. He sat in his walker and screamed at the guy. He couldn't figure out why that guy was outside instead of inside. It was so funny. We are praying for a good night so we can go tomorrow. See ya soon!

Friday, June 4, 2010

Day 18


Well we have been in the hospital for 18 days now. Next week will start our fourth week. I am hoping to be discharged sometime next week. Our counts are down and when the doctors come in in the mornings I have stopped asking what our labs are for the day. Instead I give them a thumbs up and down and they motion back up or down to tell me which direction our counts are going. They are still heading down. Our challenge this week has been keeping Critter occupied. He is all over the place. He has decided it is fun to sit on the rolling bedside table.


Our lights that the docs use to look at their eyes have been replaced and then just left dead because he wont leave them alone. He will no longer stay on just his blanket so we scrub the floor and walls, that are not covered by the blanket, with bleach wipes and just let him go. The good news is yesterday he watched a full baby Einstein movie! At least he is happy. I have talked to many parents this week who have it much worse. Come to think of it I'm better off than all of the parents I have spoken with this week. We are so blessed in so many ways. I feel guilty that I have received so much when others are suffering. This experience has definatly taught me to be more aware of others trials and to be thankful for what I have.

Sunday, May 30, 2010

A good week.

What a week we have had. We didn't even do anything and that's what makes it so good. We have finished our chemo and are playing the waiting game now. Today his ANC was at 0 which is right where we want to be. We also have been able to keep his line intact all week.YEAH!!! We move his line so it now goes over his shoulder and has a lot of tape to hold it in place, this way if it does get pulled on it puts tension on the tape and his shoulder and not the weak points in his line. As we enter this stage of the treatment it is different for us. Last time Critter was really sick when we came in and by the time we had finished our chemo he was much healthier and happier. The difference is that he was healthy and happy when we came in but now he is tired and sick again(they say this is normal). Some other things are happening too. Because his platelets are low he is getting bloody noses we he cries and he is occasionally throwing up, neither of which are really that bad (except now our sink smells like vomit yuck!). All and all we have had a pretty good week.

Thursday, May 27, 2010

Walk Run for Critter!

Hey Jason's cousin Lindsay has put together a walk run for Critter! Thank you so much Lindsay! For more info there is a link on the right hand side of our blog. We are so thankful to everyone who has given us so much love and support. We have the best neighbors, friends and family. Unfortunately Critter wont be at the event (due to low counts he can't go out even if he is at home)but the rest of the family will be there(I hope). I have heard of missionaries that have their whole districts praying for us, high school kids who have rallied their football teams for us and countless people who have brought in meals and babysat kids. We are so touched by any and all support we have received. Me and Jason feel very at peace and comforted because of your prayers and support. We can go forward with the faith you have lent us and we are so thankful. We love you all.

DALLIN!





Congradulations Dallin! He has offically graduated from pre-school! Jason's mom came to the hospital so we could both attend the graduation. Mrs. Tammy put on an awesome program! She has done an excellent job with these kids and we are so grateful for the help and support we have recieved from her. True to Dallin form he had a huge wad of gum in his mouth and chewed it like a cow! Half way through the program the gum fell out of his mouth on the floor. At the end of the program he picked it back up and popped it into his mouth! Here are some pics of the day.

Ouch!


Critter is very active and he knows how to use his head! His platelets are low so he bruises easy (I don't think it would matter what his platelets were he would still be covered in bruises!) and he uses his head to fall on. The sink in our room is just low enough that if Critter stands up in his walker he hits his head. So he runs into it a lot. He has also hit his head on the under part of his crib. Also if you look closely you can see a big bruise across the bridge of his nose! He fell. Whoops.

Also...does anyone see what is missing in the last picture? No IV! yeah! He only has to be on his IV at night now. He needs to stay hydrated and isn't quite drinking enough but he is still drinking some so they unhook us during the day and we get fluids at night. It is soooo nice not to constantly untangle, unwind and pull back on IV lines!

Done with Chemo!


Yesterday we had our last dose of chemo! Yeah! It was supposed to be 8 days but it took us 9 days because of line breaks. Now we wait. Critter's counts are still not down. His whites are 2.8 his anc is still 800 so we can still venture out of the room at least until Friday (I bet by then his ANC will be below 500 and we will have to stay in). This round went well except for the 6 line breaks, the chest skin bubbling, the bleeding diaper rash, and a few vomiting episodes. Well looking back it wasn't that great but the good points are he slept much better which makes everything easier to handle! He would wake up while he got his eye drops and diaper changes and go back to sleep I think I only rocked him all night once or twice! Last time it was almost every night so it was way better! Also he is way more active this time. He was so sick last time we just held him the whole time this time we chased him! Try containing a one year old on a blanket for weeks on end! Even when he was sick he would stop...throw up... and crawl away! He seems very happy considering his circumstances. He is such an example of being positive whatever situation you are in.