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


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


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 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.