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 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.