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.
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.
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.
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!
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.
What a week we have had! If anyone has ever had a one year old they will understand this completely, Critter is a little ball of energy that no one could harness. He has his own agenda, his own time schedule and also his own central line. The line they have place is not very big, it is maybe 3/16" in diameter and has to separate lines inside of it. Needless to say it's not the strongest thing in the world and Critter uses it to get our attention. If he is done playing or wants us to pick him up he grabs and pulls and bites it until we comply. Even if you are not good at math you have probably solved this equation of trouble and figured that the line breaks.
Over the past week we have seen his line repaired six times, that's right six stinking times and they have only been able to repair it twice without removing his line dressing. For all of you who have never seen a dressing change let me walk you through it. 1. Because he is an infant and he wiggles and pulls and rolls etc. we have to hold him down. We have learned a great technique of wrapping his arms in a blanket and pinning it under his body and then we just hold his legs and steady the rest of him. 2. Remove the old dressing, this requires pulling sticky tape off of tender skin. 3.They clean with an alchol swab three times and then another cleaner 4. You then apply a new dressing.
Normally you should only have to change this once a week or as needed, so normally he is pretty good about only a few tears but after 7 times in a week(twice they did it twice in a day) he is not tolerating it well any more. The worst part for him is the cleaning process, his skin is getting so irritated from all of this it must sting something fierce when they do it.
Children really are amazing and I know why Christ always said to become as little children. Kids have the ability to forgive and love unconditionally, I don't know if I could laugh and play with someone who a half hour ago pinned me down and tortured me for a reason I don't know why. He does it though, he really is an amazing kid. He is strong, determined and loving unconditionally, he is such an amazing example to me on how I need to be. Needless to say even though it doesn't look it he really does have a thick skin.
Jason originally wrote this but I had to add that his bum looks much the same. The chemo causes rashes. We didn't want to post a picture because we might get in trouble for running a porn site. But thanks to Stephanie (Odette's mom) we have amazing road tar (that's what it smells like)! This cream is awesome! Once the chemo stops it will cure the rash completely but for now it keeps it bearable.
At first I thought Critter would have no problems with this round but by day three he threw up his lunch and was really fussy. Last night I spent most of the night in the rocking chair holding him. But we have given him some Tylenol and he seems to be doing better. And don't feel too bad for me I put him down for a nap at noon and I slept till 2 so I made up for the bad night. I just feel bad because I now know why the other parents hated coming back to the hospital. You take a healthy kid and give them drugs that make them sick. It's no fun especially when he doesn't understand any of it.
Critter has become a monkey though. He is all over the place. He wants to crawl up the rocking chair. Crawl onto the bedside table. He even was stepping on suction canisters hooked to the wall so he could crawl up the wall! And he is standing up now on everything. He is REALLY unsteady (some of his meds may cause dizziness) but he keeps trying. When I set up the blanket on the floor with toys I put the crib on one side so he can't crawl off of it, but instead he decided to crawl onto the crib. There was a big temper tantrum when I got him out of there. We have also been roaming the halls in the walker but he has discovered that there are drawers with papers and files in them and now be lines for the nurses desk to throw papers everywhere. This also ends in a temper tantrum. I think it helps to have siblings around. He doesn't throw as many temper tantrums at home.
Well here we are again! We were admitted Tuesday for our next round of chemo. The picture is Critter getting an EKG. I thought he would be awful but they gave him a sucker and he sat quietly and ate it! They do an EKG before they start another round because some of the chemo drugs are really hard on the heart. In fact the doctor told me if you were an 80 year old with this disease your heart probably couldn't handle the treatment. Critter's heart looks great!He is a healthy little boy! Well kinda.
Well I have officially received the biggest bill of my life! How much do you think it would cost to spend 23 days in the hospital. This does not include the separate doctor and anesthesiology bills that have already been coming for some time. How much does around the clock nursing care plus high does chemo therapy cost? And don't forget the blood and platelets he has been receiving. Any guesses?
The total is $115,183.67!
Wait don't panic too much this is before insurance. Turns out that platelets cost about $1200 each transfusion. Packed red cells are much cheaper at $418. One of his chemo drugs is $2561 a dose! Luckily this is the one he only receives a few times. Most of the chemo drugs are between $100 - $200 a dose. With all of these charges I was surprised to see the charge for the recovery room after his LPs. We spent (the bill says we spent) on average one to four minutes there and we were charged all of 4 cents for that stay! Talk about nickle and dimming you!
Monday morning we woke up and ate breakfast. I was going to give Critter a bath because we had family pictures planned for today. When I looked at Critter's shirt there was a little drop of blood on it. I knew that didn't bode well so I quickly woke myself from my morning zombied effect and gathered supplies to flush his lines. Well when I did my fears were confirmed. Water went squirting everywhere! The line had broken. Luckily they had given us these handy emergency clamps. I clamped it, threw on my best hat, dropped Dallin at my mom's house and ran to the hospital. They were able to repair his line and told us to cross our fingers and hope it works when we are admitted tomorrow! So I got home at 1:50pm with no shower and no lunch. Luckily the photographer had called to move our appointment from 2 until 4! (She must have been inspired!) So you see all things do work together for our good. I just hate having to be ready to run to the hospital at any moment.
We have nick named Critter the bubble boy because he has to stay away from everyone! We love the wild animals in the neighborhood that will come to gawk at him through the window. He loves to see the other kids and beside I had pop sickles I needed to get rid of.
I thought I should update what has been happening before we return to the hospital. Well on Friday we went up to the hospital for an LP and bone marrow aspirate. The LP should show no cancer cells. The bone marrow aspirate will show if his body has started to produce healthy cells or cancer cells. At this time it should show no cancer cells or very few cancer cells. We will get results tomorrow. These results will show how his body responded to the chemo. We did find out the neither Luke or Dallin were matches for a bone marrow transplant. The docs say as long as our bone marrow aspirate results are good they wont even consider a BMT unless he relapses! Yeah! Our appointment was at 10:00 am in the clinic and then 11:30 for the LP. Of course things were running a bit behind so by the time I got home it was about 1:30! Another day half way over. Dallin came with me to these appointments and was very well behaved. He was offered toys at every turn and we watched most of the movie the Princess and the Frog at one point. But when we got home all he wanted to do was play doctor! Him and Luke got note pads and doctor stuff and followed Critter around saying yes doctor there is cancer in his temperature! Take him to the sick unit now! We will have to use Chemotherapy! I was surprised how much they had picked up. I was also wondering if Critter ever got sick of being the patient.
When we were first admitted to the hospital the doctors kept saying that you had to be really flexible with the plan of care. It all depends on how the labs look. Well they were right. Critter go labs drawn yesterday and they called to say things look good but he needs a few more days at home before they want to start chemo again. So the new plan is LP and bone marrow aspirate on Friday and we will be admitted for more chemo on Tuesday. We can't decided if this is good or bad. We love the time at home but at the same time we are ready to move on and get this over with! The good part is he no longer has to be on IV antibiotics. One of these doses was supposed to be given at 6:00 am and me and Jason were starting to argue over whose turn it was to get up and give the meds so this is a good change. Maybe this has happened to teach me patience. I hate being patient.
One of the things we have always prided our selves on is the fact that our kids are really good sleepers. They have all slept through the night at a young age, Luke and Dallin would sleep in until 8:30 or 9:00 every morning (or later). Some people are just blessed I guess.
Before we took Critter in to the hospital he was taking two-two hour naps a day, going to bed at 8:00 pm and sleeping for twelve hours, it was great.(we have learned that this was because his red blood cells were low. I'm starting to wonder if that is a bad thing though) Any way, since we have been home I think we only have one complaint, he doesn't want to sleep anymore than he has to. Critter still goes to be great but has decided he wants to be awake at 6:15 every morning and wont nap for longer than 45 minutes once a day, if any of you know us very well we are not morning people and we love our naps so we are almost ready to send him back to the hospital to drop his counts so we can finally get some sleep.(That's a joke we are not looking forward to going back but is has been brought up as a solution to our problem)
So if there are any morning people out there that want to come hang out at our house from 6 till 7:30 let me know and we'll see what we can arrange. As for the rest of us we will try to embrace him as our own despite our differences.
I would have never thought that just being home with Niki and the kids would be the best day ever but it is. We are so grateful for this brief time we have to be together at home, we are to the point that all of the hospital stuff is easy to deal with but the hardest parts of this whole ordeal have to do with the rest of us and how much we miss each other, the fact that we are getting a new hospital bill almost daily and the fact that I would much rather be with the family than be at work.(That's not very conducive with the hospital bills though)
The boys are so happy to have Crid home they treat him like a new puppy, they just don't want to leave him alone, as for us we are content with continuing our old routines of homework, dinners, bedtimes and being able to snuggle with someone besides Duke during the night.
We still don't get far from anything medical though, Critter is on three oral meds and one IV med that we have to give every six hours. The home health people will come on Thursday and Monday to draw our labs so we don't have to go to the hospital until Tuesday. We are scheduled to go in an Tuesday to get an LP and draw labs to get ready for our next round on chemo which we start on Thursday.
So for now we will enjoy our time hear at home and try not to think to much about moving back in to the hospital for a month.
This is a balloon the Atkinsons sent us the second day we were here. It is still on the celeing! Wow super balloons! But the other reason why there is sunshine in my soul is because we are going HOME today!!! I am soooo excited! I am packing everything right now even though we probably can't go for a few more hours but we will be home by the time Luke is out of school! It was three weeks as of yesterday that we were admitted. Three weeks! We will only be home for a week and will be on all kinds of meds at home but who cares we will be home! YEAH!!!
Breaking the rules always has very satisfying adrenaline rush! There was a barking visitor in the hall and after Critter sat and laughed at every bark for a few minutes we broke the rules to leave our room and visit the animal. The problem was it was during lunch time and the dog loved Critter's peanut butter sandwich as much as Crid loved sharing it! Lets just say the both enjoyed each others company and after we had to give him a good washing! Its so much fun to make new friends at the hospital!