Thursday, March 31, 2011
Interesting Day
*Warning - this post talks about bodily functions....so if you aren't wanting to know, don't read as it could be too much info for some, but I know that family wants to know pretty much everything so here it is... Chan and I headed up to his appointment today hoping it would be as quick and painless as possible. Chans counts all came back great, but his large 'buddha' belly was a concern, and so was the constant drinking and urination. So, they did a glucose test, and another belly xray. Sugars came back perfect which was a relief, but the xray showed a huge backup of gas and stool. I had thought we were doing pretty good with that because he was going twice a day with what I thought was a lot for a little guy. But apparently he isn't keeping up with all the burritos he is putting in. We were given instructions to drink an entire soda bottle of laxative and hope that it would clear him completely out (by completely cleared out i mean watery diarrhea, cuz I know you wanted to know ;). We are getting close to this goal but still haven't achieved it 5 hours later, so we get to move on to phase 2 of the plan which is a whole bottle of Miralax in a 64 ounce container of Gatorade and drinking at least a cup every hour if not more. It is 7:3o now, so we are in for a long night of fun.... If we meet the goal of water stools then we have no more worries for now, but if not then we have to go back to AFCH and maybe do an xray but maybe have to be admitted to the hospital to help get him all cleared out. I know that we will be pretty tired tomorrow after being up all night with the little guy, but hopefully it will pay off and we can enjoy all of the exciting weekend plans we have!!
Wednesday, March 30, 2011
Getting back to 'normal'
Things have been getting back into a 'normal' routine for us. We are able to do all the things we did before, and just have to add in going to the Dr every Thurs . I have really liked getting back into the normal day to day, playing with the kids, staying in my pjs all day, eating junk, cleaning (weird right?), but it puts a sense of normalcy back into our lives, which I need! It helps me feel 'normal' as opposed to feeling like something is wrong. I know that this isn't going to last forever, that there will be a time where Chan has to be hospitalized, or his blood levels are low so his immune system is low and we won't be able to do all the things we do, but for now I am going to enjoy it! Tomorrow we will go back to the Dr. and Chan will get another Chemo treatment. It will be in clinic just like last week, and hopefully all will go smoothly. I am not going to bring Jay with us, just because its a little added stress that I don't need, and the poor kid needs to get some energy out playing with a friend. Chan and Jay used to play together all the time, so they didn't really learn how to play individually very well. Since Chan has been sick Jay has been having to occupy his own time and he is having a hard time learning how to do that, and I am having a hard time trying to get him too. I have become Jay's play buddy but still can't run his energy out like he used to, so by the afternoon I am exhausted and Jay doesn't stop. Hopefully soon this too will get easier and Jay will get better at playing individually and I will be able to be more patient with all his energy :) - Alyssa
Monday, March 28, 2011
Dolly Port
Two chemo appointments ago the Child Life specialist (group of people who provide distraction to kids while getting poked, and who explain in child terms what they are going through) gave me two sets of medical equipment that they use to access Chan's port in office. This way Jay and Chan could play with the instruments and become more familiar with what they do in the office so that it wasn't so scary for the kids. I thought this was a great idea so we got out a dolly and I showed the boys how they cleaned the port, put the needle in, and how they give Chan medicine. This is a video of the boys showing all of you what they learned:
In other news...
Chan, Jay and Em are excited that they are getting a baby BROTHER in August!!! We just found out Friday night and couldn't be happier. Em will maintain her princess status for now.
Burritos and Tacos...
Chan has a monster sized appetite!! He cannot get enough to eat. All this last week he wanted burritos. Just a tortilla with taco meat, cheese, tomatoes and sour cream. Our meals with him would look something like this: Breakfast - two bowls of cereal, and a burrito Snack - a burrito Lunch - a bowl full of spaghetti and a burrito Dinner - whatever we were having, and a burrito. He ate more then I can and I am eating for 2!! He wanted a burrito in the middle of the night most nights too, but we were able to convince him to go back to sleep and wait till the morning. Having this huge appetite is a result of the steroids Chan is on. It gets pretty entertaining when we are sitting in church and out of the blue Chan shouts "I want a burrito taco!!". Or when we were driving past a Taco Bell and he gets so excited "LOOK!! a burrito taco place!! Lets go!! I want a burrito taco!!" When I took Chan to get a burrito after his dr appt on Thurs he ate an entire chicken and rice burrito and a taco! Usually he can't even finish the burrito. I guess we will add burrito tacos to Chans list of favorite foods :)
Thursday, March 24, 2011
Outpatient Appointment
Jay went with Chan and I to the outpatient appointment because it was a 'shorter' appointment. We just went to the clinic (still at AFCH) where Chan received another Chemo treatment through his port. All went well. It was good for Jay to see what Chan does, though he still doesn't understand a lot of it. Jay was upset when we left the dr because he (Jay) did not get a poke...strange thing to be upset over for a kid.
We got the results for the blood MRD back yesterday and it was negative, which means that there is less then .01% cancer cells in Chans blood. In two weeks they find out what percentage of cancer cells are in the bone, and the hope is that it is less then .01% too. Which means we move into Phase 2 of cancer treatment. We are well on our way to achieving remission!!
Chans CBC (complete blood count) levels are lower then normal but still ok. Hopefully, they will rise again and we won't need a hemoglobin transfusion next appt.
Chans tummy is large, they told us that on the steroids that Chan would look like a lemon on a stick - big belly sticks for legs. I asked the dr about it last week because Chan seemed to be very uncomfortable in his stomach and they did a belly x-ray. His liver is enlarged, which isn't abnormal, but they want us to make sure that it doesn't get worse. Yesterday Chans NP put Chan on Lactulose which should help Chan have more bowel movements to get things moving a little more and hopefully make Chan more comfortable. Another use of Lactulose is for treating liver disease, though that isn't why we are using it maybe it will help Chans enlarged liver.
Once again I am completely overwhelmed and in awe of the support we continue to receive. I came home from a long day in Madison to a clean house and lots of fun treats and snacks on the table. I am so grateful for the amazing friends that have been cleaning my house every week - it is so nice to have that stress off my plate. I am grateful for everything everyone has done, and am still in awe over the generous gas card we were given yesterday. Each of these things eases our burdens so we can focus on our baby and getting him better without having to stress about all of the day to day things. THANK YOU, THANK YOU, THANK YOU!!!
We got the results for the blood MRD back yesterday and it was negative, which means that there is less then .01% cancer cells in Chans blood. In two weeks they find out what percentage of cancer cells are in the bone, and the hope is that it is less then .01% too. Which means we move into Phase 2 of cancer treatment. We are well on our way to achieving remission!!
Chans CBC (complete blood count) levels are lower then normal but still ok. Hopefully, they will rise again and we won't need a hemoglobin transfusion next appt.
Chans tummy is large, they told us that on the steroids that Chan would look like a lemon on a stick - big belly sticks for legs. I asked the dr about it last week because Chan seemed to be very uncomfortable in his stomach and they did a belly x-ray. His liver is enlarged, which isn't abnormal, but they want us to make sure that it doesn't get worse. Yesterday Chans NP put Chan on Lactulose which should help Chan have more bowel movements to get things moving a little more and hopefully make Chan more comfortable. Another use of Lactulose is for treating liver disease, though that isn't why we are using it maybe it will help Chans enlarged liver.
Once again I am completely overwhelmed and in awe of the support we continue to receive. I came home from a long day in Madison to a clean house and lots of fun treats and snacks on the table. I am so grateful for the amazing friends that have been cleaning my house every week - it is so nice to have that stress off my plate. I am grateful for everything everyone has done, and am still in awe over the generous gas card we were given yesterday. Each of these things eases our burdens so we can focus on our baby and getting him better without having to stress about all of the day to day things. THANK YOU, THANK YOU, THANK YOU!!!
Monday, March 21, 2011
Medications
I had a friend ask how many meds Chan takes in one day. This last week has been a lot, but as time goes on it will get less. Here is a breakdown for anyone interested:
We left the hospital with 13 different medications...
6 are daily medications for the first week
4 are as needed medications to balance out side effects of the Chemo and the other meds
1 is twice daily on the weekends
1 is an epipen
1 is a numbing cream to be used before accessing port
Now Chan only has to take 4 different kinds of medication multiple times during the day. We made a medication schedule so we were sure we would give him the right meds at the right time.
The first week at breakfast Chan would take:
A med to reduce uric acid (which is released when cancer cells are killed)
An antibiotic to kill off the strep infection, and help him fight off infections that siblings had.
A steroid (part of the chemo treatment)
A pill to coat the stomach to protect stomach and so ulcers don't form from the steroid.
And miralax to help him have a soft bowel movement.
2:00pm Chan would take:
A med to reduce uric acid (which is released when cancer cells are killed)
An antibiotic to kill off the strep infection, and help him fight off infections that siblings had
Dinner:
A steroid
A pill to coat the stomach to protect stomach and so ulcers don't form from the steroid.
And miralax to help him have a soft bowel movement.
8:00pm:
A med to reduce uric acid (which is released when cancer cells are killed)
An antibiotic to kill off the strep infection, and help him fight off infections that siblings had
A med that helps fight off mold/fungal infections
Now we have cut out the Miralax, the med to reduce uric acid, and the Antibiotic. So he isn't on quite as many meds....
-Alyssa
I have also been giving each of the siblings a children's chewable w/extra vitamin C at dinner (though this is not a medicine, I feel it's still important). :-)
-Kindt
We left the hospital with 13 different medications...
6 are daily medications for the first week
4 are as needed medications to balance out side effects of the Chemo and the other meds
1 is twice daily on the weekends
1 is an epipen
1 is a numbing cream to be used before accessing port
Now Chan only has to take 4 different kinds of medication multiple times during the day. We made a medication schedule so we were sure we would give him the right meds at the right time.
The first week at breakfast Chan would take:
A med to reduce uric acid (which is released when cancer cells are killed)
An antibiotic to kill off the strep infection, and help him fight off infections that siblings had.
A steroid (part of the chemo treatment)
A pill to coat the stomach to protect stomach and so ulcers don't form from the steroid.
And miralax to help him have a soft bowel movement.
2:00pm Chan would take:
A med to reduce uric acid (which is released when cancer cells are killed)
An antibiotic to kill off the strep infection, and help him fight off infections that siblings had
Dinner:
A steroid
A pill to coat the stomach to protect stomach and so ulcers don't form from the steroid.
And miralax to help him have a soft bowel movement.
8:00pm:
A med to reduce uric acid (which is released when cancer cells are killed)
An antibiotic to kill off the strep infection, and help him fight off infections that siblings had
A med that helps fight off mold/fungal infections
Now we have cut out the Miralax, the med to reduce uric acid, and the Antibiotic. So he isn't on quite as many meds....
-Alyssa
I have also been giving each of the siblings a children's chewable w/extra vitamin C at dinner (though this is not a medicine, I feel it's still important). :-)
-Kindt
Saturday, March 19, 2011
First Outpatient Appointment
Chan had his first outpatient appointment on Friday. They did blood work which all came back great, and almost within normal ranges which is amazing! We also got the results of the cytogenics test they did to find where the mutations that caused Leukemia occurred. Thankfully, the mutations occurred in the most common areas, so now Chans type is Leukemia ALL B cell, favorable. Which means that this type responds well to Chemo and we can stay the course of treatment we are on. There is only one more test that we are waiting the results on to make sure that all the cancer cells have been killed and that Chan is in remission, we will get the first set of the results next week, and the last set of the result at the end of the 28 day cycle (April 8th ish). Things are looking really good, and we feel very blessed that for what he has it is all going well.
Chan is also doing well. He has been playing more this weekend, and having fun with family. Its always nice to see my sweet boys personality come back. He has some weird reactions to the steroids he has been prescribed as part of the Chemo treatment. They make him withdrawn, and give him crazy eyes. Chan doesn't blink much and when he looks at you his eyes are large and staring. I think they look like the squirrels eyes off Ice Age. Hopefully, this side effect will go away at the end of this phase of Chemo when Chan isn't on the steroids anymore.
Sadly, I ended up being sick this weekend, so I got the weekend off from kids. Which was in a way refreshing, but also very hard. I am feeling much better now, and hope that it was a one time thing that will not be passed to the rest of the family.
Thank you all again for all of your prayers. We can see the difference in our lives because of all of you continually praying for our family. We know that Chans side effects have been minimal and that his prognosis is staying positive because of all the prayers in Chans behalf. Please don't stop praying, we know that your prayers are working miracles in our life.
-Alyssa
Chan is also doing well. He has been playing more this weekend, and having fun with family. Its always nice to see my sweet boys personality come back. He has some weird reactions to the steroids he has been prescribed as part of the Chemo treatment. They make him withdrawn, and give him crazy eyes. Chan doesn't blink much and when he looks at you his eyes are large and staring. I think they look like the squirrels eyes off Ice Age. Hopefully, this side effect will go away at the end of this phase of Chemo when Chan isn't on the steroids anymore.
Sadly, I ended up being sick this weekend, so I got the weekend off from kids. Which was in a way refreshing, but also very hard. I am feeling much better now, and hope that it was a one time thing that will not be passed to the rest of the family.
Thank you all again for all of your prayers. We can see the difference in our lives because of all of you continually praying for our family. We know that Chans side effects have been minimal and that his prognosis is staying positive because of all the prayers in Chans behalf. Please don't stop praying, we know that your prayers are working miracles in our life.
-Alyssa
Thursday, March 17, 2011
Thurs update
Today has been a really good day so far. I have actually gotten Chan out of bed to eat breakfast and lunch with us! He is even laying on the couch watching Dora with all of us. Its nice to have all my babies in one room.
Jay gets to go on a special outing this afternoon with Auntie Am and cousin AE. They are gong to go to a local children's museum while Em and cousin C, and Chan (and maybe me too, but doubtful) get a nap. It will be really good for Jay to have some special time. Jay keeps telling me he is sick like Chan, and I try to explain that their owies are different and Jay does not want what Chan has. His cute little 3 yr old mind doesn't wrap around that very well :)
Chan and I will leave this evening to head up to Madison (about an hour and 15 mins away) and stay at the Ronald MacDonald House so that we don't have to fight traffic in the morning to get there by 8:00am. I cannot express how thankful I am that they offer such a nice place for us to stay before, during, and after doctors appointments and hospital visits.
We have such amazing friends and family. We have been so blessed by the thoughtful gifts that people have given us, from pictures their kids have colored, to bags of snacks for the hospital and car rides, fun new toys for the kids, to a grab bag of toys for Chan to play with during the long hospital appointments. We feel extremely blessed and loved, and I am sure you all know this by now, but THANK YOU!!! Each thing puts a smile on my face and makes this journey that much easier.
Jay gets to go on a special outing this afternoon with Auntie Am and cousin AE. They are gong to go to a local children's museum while Em and cousin C, and Chan (and maybe me too, but doubtful) get a nap. It will be really good for Jay to have some special time. Jay keeps telling me he is sick like Chan, and I try to explain that their owies are different and Jay does not want what Chan has. His cute little 3 yr old mind doesn't wrap around that very well :)
Chan and I will leave this evening to head up to Madison (about an hour and 15 mins away) and stay at the Ronald MacDonald House so that we don't have to fight traffic in the morning to get there by 8:00am. I cannot express how thankful I am that they offer such a nice place for us to stay before, during, and after doctors appointments and hospital visits.
We have such amazing friends and family. We have been so blessed by the thoughtful gifts that people have given us, from pictures their kids have colored, to bags of snacks for the hospital and car rides, fun new toys for the kids, to a grab bag of toys for Chan to play with during the long hospital appointments. We feel extremely blessed and loved, and I am sure you all know this by now, but THANK YOU!!! Each thing puts a smile on my face and makes this journey that much easier.
Wednesday, March 16, 2011
Thoughts...
**Beware: Any posts labeled thoughts could cause tears...
So far this morning, I have administered 8 different kinds of medication, made breakfast, dealt with 5 fits from 3 different children, made 5 phone calls, and so much more craziness and its only 9:45 am...
If only Jay and Em could give some of their seemingly never ending energy to Chan. Sweet little Chan hasn't wanted to get out of bed yet today, but I can't blame him since his siblings are going a little crazy!
Last night I found myself going back to how it feels with a newborn in the house. Not wanting to let Chan out of my sight for fear of something happening to him, wanting to go in and check on him every 5 minutes to make sure he is still breathing, just wanting to hold him all night so I know that he was fine. As much as I thought about checking on him every two seconds I stopped myself from doing it - knowing it would be worse for both of us if I did. He needs his sleep as much as I need mine. I am sure that as time goes on I will stop feeling this way, just as I did with each of my babies as they were newborns.
I know that Jay and Em are throwing fits because their lives have been turned upside down just like the rest of our lives. I know that with time things will heal and get easier as it gets more routine. Each day, each moment we are taking baby steps to make it to the end, each and every accomplishment is something to praise, each morning is a new morning with new challenges. We will get through this - we will be stronger, our faith and testimony will grow and we will be a much happier, much better family in a couple years.
- Alyssa
So far this morning, I have administered 8 different kinds of medication, made breakfast, dealt with 5 fits from 3 different children, made 5 phone calls, and so much more craziness and its only 9:45 am...
If only Jay and Em could give some of their seemingly never ending energy to Chan. Sweet little Chan hasn't wanted to get out of bed yet today, but I can't blame him since his siblings are going a little crazy!
Last night I found myself going back to how it feels with a newborn in the house. Not wanting to let Chan out of my sight for fear of something happening to him, wanting to go in and check on him every 5 minutes to make sure he is still breathing, just wanting to hold him all night so I know that he was fine. As much as I thought about checking on him every two seconds I stopped myself from doing it - knowing it would be worse for both of us if I did. He needs his sleep as much as I need mine. I am sure that as time goes on I will stop feeling this way, just as I did with each of my babies as they were newborns.
I know that Jay and Em are throwing fits because their lives have been turned upside down just like the rest of our lives. I know that with time things will heal and get easier as it gets more routine. Each day, each moment we are taking baby steps to make it to the end, each and every accomplishment is something to praise, each morning is a new morning with new challenges. We will get through this - we will be stronger, our faith and testimony will grow and we will be a much happier, much better family in a couple years.
- Alyssa
Tuesday, March 15, 2011
Home Sweet Home!!
We are home!! It is so nice to be home, and much nicer to be in a clean home!! I am SOOO thankful for those friends that came over today and scrubbed my house. Such a blessing to have that worry gone so Chan can have a safe environment to be in. Our friends also brought over some necessities like toilet paper, paper towels, juice, crackers and much more. Another friend also came over and watched 3 kids so that my sister could take her daughter to the doctor. We are well taken care of and feel so very blessed!!
Chan is a little overwhelmed by all the kids around here :) But I am sure he will be back up to his normal crazy 3 yr old self soon enough! Kindt and I are also a bit overwhelmed by all the kiddos, but are happy to be able to hold them all. I am sure the fits that will be thrown in the next couple days will fun quite fun for me!
Tomorrow Chan will get his blood drawn, but thankfully we can go to the local hospital to get it drawn so we don't have to drive to Madison. Then on Friday he has his first outpatient procedure, it will be at 8 am so Chan and I are planning on staying at the Ronald McDonald house so we don't have to fight rush hour traffic.
Chan came home with a grocery sack full of meds that he will be taking for the next month. It will be interesting to get into a routine with all of the meds too!
I am also going to be going to a church function tonight, to get some 'fresh' air :) It will be nice to get into as much a sense of 'normalcy' as possible. Thanks again to all who have called, emailed, messaged, given, etc!
- Alyssa
Chan is a little overwhelmed by all the kids around here :) But I am sure he will be back up to his normal crazy 3 yr old self soon enough! Kindt and I are also a bit overwhelmed by all the kiddos, but are happy to be able to hold them all. I am sure the fits that will be thrown in the next couple days will fun quite fun for me!
Tomorrow Chan will get his blood drawn, but thankfully we can go to the local hospital to get it drawn so we don't have to drive to Madison. Then on Friday he has his first outpatient procedure, it will be at 8 am so Chan and I are planning on staying at the Ronald McDonald house so we don't have to fight rush hour traffic.
Chan came home with a grocery sack full of meds that he will be taking for the next month. It will be interesting to get into a routine with all of the meds too!
I am also going to be going to a church function tonight, to get some 'fresh' air :) It will be nice to get into as much a sense of 'normalcy' as possible. Thanks again to all who have called, emailed, messaged, given, etc!
- Alyssa
Tuesday Update
11:00am - Alyssa is still sleeping over at the Ronald McDonald House, so I thought I'd give a quick update.
The doctors say we should be able to go home today!! Chan no longer is attached to an I.V. (mostly because it started to leak this morning and they had to take it out). We've already been out for a walk and played with some of the staff here. They still need to check a few more things before we get the all clear, so we're keeping our fingers crossed. They are going to be sending us home with about a million different meds. Hopefully we will be able to keep them all straight. It looks like Chan will need to get another blood lab tomorrow too, more pokes :( They want to keep a close eye on him to make sure things are going ok. Then more Chemo on Friday. He will be put on a Thursday schedule eventually, and we were told that that will be a weekly thing for quite a long time (sounded like the first 6-8 months).
Now we are just looking forward to coming up with a new routine and restoring some normalcy.
-Kindt
The doctors say we should be able to go home today!! Chan no longer is attached to an I.V. (mostly because it started to leak this morning and they had to take it out). We've already been out for a walk and played with some of the staff here. They still need to check a few more things before we get the all clear, so we're keeping our fingers crossed. They are going to be sending us home with about a million different meds. Hopefully we will be able to keep them all straight. It looks like Chan will need to get another blood lab tomorrow too, more pokes :( They want to keep a close eye on him to make sure things are going ok. Then more Chemo on Friday. He will be put on a Thursday schedule eventually, and we were told that that will be a weekly thing for quite a long time (sounded like the first 6-8 months).
Now we are just looking forward to coming up with a new routine and restoring some normalcy.
-Kindt
Monday, March 14, 2011
Monday update
Chan is doing well. He had his first dose of PEG (can't spell the whole name) a little before 10am. This is the drug that can cause some pretty scary side effects, so far so good, but we will still keep a vigilant eye on him. He is eating and drinking like a champ which is always nice to see and poor Kindt has been getting up with Chan every 2 hours during the night to take him to the bathroom. I tell Kindt its just getting him used to when the new baby arrives :) Also, during Chans vitals today his heart rate was low (49- 55 beats per minute normal is about 110) so they did an EKG to check his heart and all seems fine, so nothing to worry about there. Last night they also did a finger prick for a glucose test because his sugars have been really high but they were decent at 159 (ideal is between 90-140 for his age). So nothing to worry about yet :)
Kindt and I pretty worn out and exhausted but still maintaining our humor and positive outlook. Em and Jay went to the pediatrician today and Em has an ear infection and a skin infection, and Jay has a sinus infection. Poor kiddos, I wish I could snuggle them all, but am so thankful that Auntie Am and family are taking such good care of them. Hopefully they will be getting better before we get home.
We have had some amazing offers of help, which are really putting my mind at ease so I can focus on my babies. We have some great women from our church who are going to clean the house on Tues so its all clean and safe for Chan. And we also have some women who are going to bring us meals for the next week and bring us a few frozen meals. I feel very blessed by everyone's willingness to help, it will really lift my burdens! THANK YOU!!!
-Alyssa
Kindt and I pretty worn out and exhausted but still maintaining our humor and positive outlook. Em and Jay went to the pediatrician today and Em has an ear infection and a skin infection, and Jay has a sinus infection. Poor kiddos, I wish I could snuggle them all, but am so thankful that Auntie Am and family are taking such good care of them. Hopefully they will be getting better before we get home.
We have had some amazing offers of help, which are really putting my mind at ease so I can focus on my babies. We have some great women from our church who are going to clean the house on Tues so its all clean and safe for Chan. And we also have some women who are going to bring us meals for the next week and bring us a few frozen meals. I feel very blessed by everyone's willingness to help, it will really lift my burdens! THANK YOU!!!
-Alyssa
Sunday, March 13, 2011
Pictures
We got our camera and cord and have some cute pics of Chan to show you all :)
Chan is staying in the PICU (pediatric intensive care unit). No one can go in and out of the unit without a special key card, and they make sure anyone is sick stays away because a lot of the kids have lowered immune systems. Because of this they offer a lot for the children on the floor which is so nice. Here is a pic of Chan coloring in the playroom with Auntie Britt.
There are lots of toys and crafts for the children to use and do.
We can bring any toys into our room as well.
But I think Chans favorite toy is his rollercoaster bed. He is constantly moving it up and down and loves watching mommys face while I lay in his bed and he moves it :)
As you can see in the pictures Chan is doing well. He is happy and smiling and playing like any other normal 3 yr old :)
Chan is staying in the PICU (pediatric intensive care unit). No one can go in and out of the unit without a special key card, and they make sure anyone is sick stays away because a lot of the kids have lowered immune systems. Because of this they offer a lot for the children on the floor which is so nice. Here is a pic of Chan coloring in the playroom with Auntie Britt.
There are lots of toys and crafts for the children to use and do.
We can bring any toys into our room as well.
But I think Chans favorite toy is his rollercoaster bed. He is constantly moving it up and down and loves watching mommys face while I lay in his bed and he moves it :)
As you can see in the pictures Chan is doing well. He is happy and smiling and playing like any other normal 3 yr old :)
Saturday, March 12, 2011
Fun with Visitors
We were blessed to have lots of family come visit us today. Auntie Am, cousin A, cousin C, brother Jay, sister Em, Opa, Nana, and Auntie Britt. Chan got to see Jay and Em for only a small amount of time because sadly they both have colds. I talked with Jay for a bit and tried to help him understand a little more whats going on. Apparently the biggest thing that he understood was that Chan was going to loose his hair, so mommy was going to cut off both their hair :) I reassured Jay that we love him and want him to enjoy the time he is getting to spend with all his friends and family. Chan also showed Jay where his special medicine went into his chest port. And since they couldn't touch, they gave each other special air hugs :) I miss my other kids terribly so it was nice to see them!
Auntie Britt is going to stay here with us for the weekend to save Kindt and I from the monotony of hospital life :) It will be nice to have another adult around. Kindt and I were also able to leave the hospital together for an hour by ourselves which was really nice, and desperately needed, its something that we haven't been able to do since we first got the diagnosis.
Chan is still doing great. He loved spending time with Nana and Opa painting pictures and just getting special time with them. I am sure he appreciated being away from his overbearing parents for a small amount of time too ;)
Auntie Britt is going to stay here with us for the weekend to save Kindt and I from the monotony of hospital life :) It will be nice to have another adult around. Kindt and I were also able to leave the hospital together for an hour by ourselves which was really nice, and desperately needed, its something that we haven't been able to do since we first got the diagnosis.
Chan is still doing great. He loved spending time with Nana and Opa painting pictures and just getting special time with them. I am sure he appreciated being away from his overbearing parents for a small amount of time too ;)
Sat morning update
Chan is doing really well. Up and playing! He is also out of isolation so he can wonder around and enjoy the playroom and family room the PICU has to offer. It is nice to see him back in normal clothes doing little boy stuff. Right now, he is building a train track :) We are also expecting some visitors which is exciting for Kindt and I to change up our daily thumb twiddling ;)
They request that only one parent stay the night at the hospital, so I have been sleeping at the local Ronald MacDonald House. It is just around the corner, which makes it very easy for me to go back and forth. I used to read the Loralane Mac Daniel books (I know I butchered the spelling but don't care.. ;) and always wanted to know what the Ronald MacDonald house was like. Now I know, I wish I didn't have to know, but because of the situation we are in I am EXTREMELY grateful for the Ronald MacDonald house. For those wanting to know more here is a website rmhc.org. I will give a little bit of info. It is like a house/hotel. Every room has its own key and looks like a basic 2 queen hotel room with a bathroom. They have computer rooms, library's, play rooms, video rooms, playground equipment, full kitchen and more. They tell us to treat it like our own house. The kitchen is completely stocked with food that has been donated, and different local businesses provide a nice hot meal every evening. For a pregnant women like me this is heaven!! Food whenever I want it :) They ask for a $10 daily donation per family, which I think is nothing compared to all the amazing things they offer. Any of our family can stay with us as well.
Something that you can do for me today:
Enjoy your Saturday! If you have kids take extra time to hold them, read to them, snuggle with them, make cookies, something a little extra to show them how special they are and how much you love them! If its just you, do something for yourself - Lay in bed all day reading a book, go to a movie, order your favorite food, etc. Just two of you: watch a movie, build a fort and watch a movie inside, show each other how much you love each other. If you are somewhere that the weather is nice, go outside and enjoy the sunshine for me!! Just enjoy your day, find something fun to do and do it! And if you want, leave a message letting me know what you did, so I can live vicariously through all of you :)
Thanks for all the comments and prayers!!
-Alyssa
They request that only one parent stay the night at the hospital, so I have been sleeping at the local Ronald MacDonald House. It is just around the corner, which makes it very easy for me to go back and forth. I used to read the Loralane Mac Daniel books (I know I butchered the spelling but don't care.. ;) and always wanted to know what the Ronald MacDonald house was like. Now I know, I wish I didn't have to know, but because of the situation we are in I am EXTREMELY grateful for the Ronald MacDonald house. For those wanting to know more here is a website rmhc.org. I will give a little bit of info. It is like a house/hotel. Every room has its own key and looks like a basic 2 queen hotel room with a bathroom. They have computer rooms, library's, play rooms, video rooms, playground equipment, full kitchen and more. They tell us to treat it like our own house. The kitchen is completely stocked with food that has been donated, and different local businesses provide a nice hot meal every evening. For a pregnant women like me this is heaven!! Food whenever I want it :) They ask for a $10 daily donation per family, which I think is nothing compared to all the amazing things they offer. Any of our family can stay with us as well.
Something that you can do for me today:
Enjoy your Saturday! If you have kids take extra time to hold them, read to them, snuggle with them, make cookies, something a little extra to show them how special they are and how much you love them! If its just you, do something for yourself - Lay in bed all day reading a book, go to a movie, order your favorite food, etc. Just two of you: watch a movie, build a fort and watch a movie inside, show each other how much you love each other. If you are somewhere that the weather is nice, go outside and enjoy the sunshine for me!! Just enjoy your day, find something fun to do and do it! And if you want, leave a message letting me know what you did, so I can live vicariously through all of you :)
Thanks for all the comments and prayers!!
-Alyssa
Friday, March 11, 2011
Chemo
Chan is up and about keeping his parents from sleeping. He decided he wanted to play at about 10pm. He seems to be doing really well and even said, "Dad, I feel much better! It just takes time!" Alyssa is currently reading him some books that were given to us today from the Badger Childhood Cancer Network (BCCN).
Incidentally, one of the more difficult things for myself (being the dad) is all of the toys and gifts that are being given to us. Kind of a mix of fighting pride and overwhelming appreciation. Also, it is strange what seemingly random things can bring on the water works lately.
-Kindt
A side effect of one of the medicines (steroid) Chan is taking is extreme hunger. It was entertaining for Kindt and I to watch him shove down 2 bowls of cereal in a short time! It is good to see an appetite forming as he really hasn't felt like eating for the last week.
It is weird to think that just a week ago we were 'normal', the most complicated thing on my mind was what I was going to make for dinner. And now here we are in the hospital with Cancer. Its amazing how quickly things can change...
Hopefully soon we will have our camera up here with us so we can take pics and post them as well so you can see Chan and where we are staying!
- Alyssa
Incidentally, one of the more difficult things for myself (being the dad) is all of the toys and gifts that are being given to us. Kind of a mix of fighting pride and overwhelming appreciation. Also, it is strange what seemingly random things can bring on the water works lately.
-Kindt
A side effect of one of the medicines (steroid) Chan is taking is extreme hunger. It was entertaining for Kindt and I to watch him shove down 2 bowls of cereal in a short time! It is good to see an appetite forming as he really hasn't felt like eating for the last week.
It is weird to think that just a week ago we were 'normal', the most complicated thing on my mind was what I was going to make for dinner. And now here we are in the hospital with Cancer. Its amazing how quickly things can change...
Hopefully soon we will have our camera up here with us so we can take pics and post them as well so you can see Chan and where we are staying!
- Alyssa
Nielson Family News
In other Nielson family news, baby is kicking mommy pretty constant now. The kicking became most apparent while Chan was in surgery. I think baby is letting us know that he/she cares and is fighting this along side us :)
Update
Chan is out of surgery and back in his room in the PICU. He is pretty much just sleeping. Everything went well with the port insertion, bone marrow biopsy, and first shot of Chemo. Obviously, we will know more about the side effects of this first Chemo treatment in the next few days.
Thanks again for everyone's support and love, we feel very blessed! We read and appreciate every comment and are constantly checking to see if we have new comments :) I wish I could respond to each of you individually to let you know how much we appreciate you but I am sure you understand that our time is being spent elsewhere.
Alyssa
Thanks again for everyone's support and love, we feel very blessed! We read and appreciate every comment and are constantly checking to see if we have new comments :) I wish I could respond to each of you individually to let you know how much we appreciate you but I am sure you understand that our time is being spent elsewhere.
Alyssa
Warning: Science Content
For those who would like to know even more some of the details of Chan's recent blood work please read on.
White Blood Cell Count (WBC): Chan's initial Complete Blood Count (CBC) was down across the board (Red, White, Platelets) which is what started this whole thing. Of note though was the fact that Chan's WBC was low. Normally children with leukemia have really high WBC. Leukemia (for those who are not aware as we weren't until recently) are white blood cells that are defective in that they don't mature and also reproduce uncontrollably choking off the bone marrow (which is where all blood cells originate). As the bone marrow "fills up" the leukemia cells begin to spill into the blood, which is when most children are then diagnosed as these leukemia cells (know as blasts) are detected in a blood test in a clinic. Chan did not have any blasts on his original blood tests indicating that we most likely caught this in the very early stages. Chan's blood test this morning (3/11/11 6:00am) was the first test that showed some blasts with a count of 103 (when most kids are diagnosed they can have blasts in the hundreds of thousands).
Neutrophylls: Neutrophylls (like blasts among others) are another type of white blood cell that we are monitoring really closely. These are the white blood cells that fight infections/bacteria. Healthy individuals are in the 1500-3000 count range. Chan's original blood test were in the 700-800 range. The number to be on the look out for is 500. That is when the body begins to have difficulty fighting off the natural bacteria within the body that normally helps to keep the body healthy. In other words, Chan becomes allergic to Chan. We already know that it will not be uncommon for this to happen a number of times throughout the 3 years of treatment. We just will have to be extra careful to keep any and all potential sources of illness away when this condition is present. Chan's blood test this morning (3/11/11 6:00am) showed a neutrophyll count of just over 500... the nurses didn't seem too concerned though.
Other blood counts will require Chan to need transfusions, etc. to make sure that he remains within healthy limits and we will keep you updated as that happens as best we can.
White Blood Cell Count (WBC): Chan's initial Complete Blood Count (CBC) was down across the board (Red, White, Platelets) which is what started this whole thing. Of note though was the fact that Chan's WBC was low. Normally children with leukemia have really high WBC. Leukemia (for those who are not aware as we weren't until recently) are white blood cells that are defective in that they don't mature and also reproduce uncontrollably choking off the bone marrow (which is where all blood cells originate). As the bone marrow "fills up" the leukemia cells begin to spill into the blood, which is when most children are then diagnosed as these leukemia cells (know as blasts) are detected in a blood test in a clinic. Chan did not have any blasts on his original blood tests indicating that we most likely caught this in the very early stages. Chan's blood test this morning (3/11/11 6:00am) was the first test that showed some blasts with a count of 103 (when most kids are diagnosed they can have blasts in the hundreds of thousands).
Neutrophylls: Neutrophylls (like blasts among others) are another type of white blood cell that we are monitoring really closely. These are the white blood cells that fight infections/bacteria. Healthy individuals are in the 1500-3000 count range. Chan's original blood test were in the 700-800 range. The number to be on the look out for is 500. That is when the body begins to have difficulty fighting off the natural bacteria within the body that normally helps to keep the body healthy. In other words, Chan becomes allergic to Chan. We already know that it will not be uncommon for this to happen a number of times throughout the 3 years of treatment. We just will have to be extra careful to keep any and all potential sources of illness away when this condition is present. Chan's blood test this morning (3/11/11 6:00am) showed a neutrophyll count of just over 500... the nurses didn't seem too concerned though.
Other blood counts will require Chan to need transfusions, etc. to make sure that he remains within healthy limits and we will keep you updated as that happens as best we can.
Update
Chan will be going into surgery this afternoon, about 2:00pm. They will be putting in his chest port, and doing another spinal tap, and hip biopsy to get some more bone marrow out. During the surgery they will be putting Chemo into his back. It should take about an hour for the surgery and less then 2 for him to be back in his room on the Pediatric Intensive Care Unit. Then this evening they will use his port for his another Chemo treatment. He will also be getting a steroid tonight as well to help boost his immune system and counteract the lessening of the immune system that is an effect of Chemo.
Also, I was mistaken, there is no radiation, just toxins that will come out in Chan's urine and bowel movements. Coughs, sneezes, runny noses, saliva will not have any toxins. So only if changing, wiping etc Chan and I will have to be extra vigilant so that I don't get any toxins absorbed into my skin which could then affect the baby.
We can have visitors in the hospital. For now we will limit that to family members. For any family who wants to come, we would love to have you. A lot of our time here is spent twiddling our thumbs and trying to entertain ourselves :) Call and let us know when you would like to come and we will work it out. We do ask if you are sick to please stay away because there are other children whose immune systems are weak here on the PICU (pediatric intensive care unit) including Channing. And if you want to bring us yummy food we are all for that as well ;)
Chan seems to be doing well. He is up and playing today and is enjoying the new toys they have on the unit to play with. Since Chan had a positive strep test just before admittance he is in isolation. Which basically means any hospital staff has to wear masks so they don't pass Chan's strep germs onto the others. He knows he has Leukemia, which to him means owies and that we are here to help him get better. He knows he is going to have surgery, but to what extent that he actually comprehends we don't know. We tell him what changes will happen and prepare him as much as we can. Chan is enjoying playing with his roller coaster bed!
Jay and Ema don't know much but that Chan has owies. Jay will know more when we get the chance to talk to him, and help him understand better. Em will not understand much but we will be keeping her informed as well. This is going to be a 3 year process total so as she gets older she will understand more.
We are being wheeled down to prep for surgery for the port now, so that's all for now!
Also, I was mistaken, there is no radiation, just toxins that will come out in Chan's urine and bowel movements. Coughs, sneezes, runny noses, saliva will not have any toxins. So only if changing, wiping etc Chan and I will have to be extra vigilant so that I don't get any toxins absorbed into my skin which could then affect the baby.
We can have visitors in the hospital. For now we will limit that to family members. For any family who wants to come, we would love to have you. A lot of our time here is spent twiddling our thumbs and trying to entertain ourselves :) Call and let us know when you would like to come and we will work it out. We do ask if you are sick to please stay away because there are other children whose immune systems are weak here on the PICU (pediatric intensive care unit) including Channing. And if you want to bring us yummy food we are all for that as well ;)
Chan seems to be doing well. He is up and playing today and is enjoying the new toys they have on the unit to play with. Since Chan had a positive strep test just before admittance he is in isolation. Which basically means any hospital staff has to wear masks so they don't pass Chan's strep germs onto the others. He knows he has Leukemia, which to him means owies and that we are here to help him get better. He knows he is going to have surgery, but to what extent that he actually comprehends we don't know. We tell him what changes will happen and prepare him as much as we can. Chan is enjoying playing with his roller coaster bed!
Jay and Ema don't know much but that Chan has owies. Jay will know more when we get the chance to talk to him, and help him understand better. Em will not understand much but we will be keeping her informed as well. This is going to be a 3 year process total so as she gets older she will understand more.
We are being wheeled down to prep for surgery for the port now, so that's all for now!
Diagnosis
Our sweet little Chan the Man has been diagnosed with Leukemia. He has the most common, treatable type of Leukemia - ALL (acute lymphoblastic leukemia) B cell. It is the most curable, and has the highest success rate at 95%. Here is what we know right now...
How we found out:
Chan started a high fever on Friday March 3rd. It was 103.9. He had fatigue, fever, shakes, rapid heart rate and rapid breathing. He wouldn't eat or drink anything. We went to the pediatrician and was diagnosed with strep. His tonsils were massive, with white sores. He was given an antibiotic to treat.
Chan wasn't showing any real signs of improvement throughout the weekend and into Monday (high fever, fatigue, shakes, rapid heart rate, and refusing to eat or drink. Monday I was on the phone with the pediatricians office trying to decide if we needed to go back in. A phone call from a friend, who was just calling to see how I was holding up with a sick kid, helped me to realize I needed to go back in, and being an 'overprotective mother' was ok :) I called the office right before closing Monday and scheduled an appointment for Tues morning.
We went in Tues morning and they retested for strep (positive) and did a blood draw to test for mono (negative). We received a new antibiotic figuring this strain of strep was resistant to the first antibiotic and that's why he wasn't improving. We received a phone call Tuesday evening from the on call Dr. telling us Chan's blood work came back and we should call his pediatrician first thing Wed morning. We were told Chan had low CBC and anemia. I googled those two symptoms and Leukemia was the first result. I decided that probably wasn't the smartest thing for me to have done because I was going to stress out over something that probably wasn't what it was...
I woke up at 8am Wed and made the phone call to the pediatricians office. They called me back 20 mins later, and our pediatrician was the one who called (usually its just the nurse). The Dr. said that there were more tests needed and that we needed to go to a Hematologist in Madison. I took down the info, and was told we needed to get there immediately they were expecting us. Then the Dr. said they will be testing for Leukemia. I don't remember what was said after that, but went into crisis mode calling my husband home from work, getting family to watch Chan's twin brother, Jay, and little sister Em.
When we arrived at the Children's hospital we were taken right in and talked to. They wanted to do a bone marrow biopsy, and spinal tap. Blood was drawn (very difficult as Chan hadn't eaten or drank much in about 5 days), and chest x-ray was given (to make sure sedation would be safe and no lung problems). Around 2:30pm the biopsy began. They made Chan comfortable and had a volunteer entertain him with an I-pad. Chan was awake during the quick procedure, though he was so out of it from drugs that he wasn't aware of pain or anything. Kindt and I were allowed to stay in the room while the procedure occurred. I had to leave after a minute because all of the people (6) and the beeping of Chan's vitals were overwhelming. Chan did really well with all of this. It helped that he was so tired and drugged that he probably has no recollection.
40 mins after the test, the Hematologist came in with tissues in her hand. I knew right then that the test came back positive. She talked with us for a time, then let us let the information sink in. We called grandparents and asked them to spread the news to the immediate family. We knew we would find out which type of Leukemia the following day (Thursday), so we could ease others fears with having more questions then answers before spreading the news to everyone.
Thurs (March 10) we found out that he has ALL B cell Leukemia. Which was a large sigh of relief. We are told its the best cancer to have if you have to have cancer.
Treatment:
Our initial hospital stay will be 5-7 days. We will likely be discharged Tues, or Wed of next week (March 15, or 16). This is the only planned hospital stay, the rest of the treatments (chemo) will be given as outpatient procedures. Now, we were told that we will be back in the hospital. He will likely develop a fever or illness that will put him in the hospital for treatment and watching over. This is going to happen at least once and most likely multiple times.
Chan had a blood transfusion Thurs early morning (12:30 am). He was also given fluids and antibiotics through his I.V. in his hand to help with the dehydration and strep. He finally perked up for the first time in almost a week.
Today, Friday, Chan will have surgery and a port will be put in his chest. It will stay in his chest for about 3 years through the duration of the treatment. It will not cause any pain, and Chan will have a bump under his skin where the appliance is placed. The port is used to put drugs into Chan without having to do an I.V every time. Chan will also receive his first Chemo treatment today.
Chan is in the initial stages of treatment which lasts 28 days. It is a pretty intense cycle and hopefully will pass with the least side effects and problems. After this 28 days, we will do another bone marrow biopsy, and the hope is that all cancer cells will be dead. Then we go into phase 2 which is making sure that the cancer cells don't form again. We don't know much about that phase yet, because its all dependent on phase 1. The first two phases will take 6-8 months and then we should be in maintenance phase which lasts an additional 2-3 yrs, which is less invasive just making sure Chan stays in remission.
How are we doing:
We are doing o.k. We are extremely optimistic. We obviously have our good moments and bad. I think we are nervous about the side effects, and how our sweet little boy is going to handle all of this. We feel torn between Chan who needs us so much and our other two children, but know that Jay and Em are being well taken care of.
What you can do:
Prayers, and support for us and our family. These next few months are going to be full of ups and downs for all of us. I know it is hard for those who are far and want to help. Knowing you are thinking of us is a lot of help, I am so sorry for the helpless feeling many of you will have. Please feel free to ask ANY questions. I am happy to answer them as best as I can. My husband and I have been labeled as information seekers with the staff on the pediatric intensive care unit so they are used to us asking tons of questions and have been really good with getting us the answers we seek. We don't know what help we will need, but anything will be appreciated. Offers of cleaning my house and making me dinner will always be well received, haha :) Any help with picking up and entertaining our other children will be much appreciated. We are going to have to make sure we help them still feel loved and special while brother is getting so much attention. Honestly though, thoughts and prayers.
Something you can do for Chan and for me is to go out of your way to make someone else feel better. Why I say this: Yesterday, I went home grabbed the things we would need for our hospital stay. On the way back to the hospital I stopped at fast food and got something to eat. Apparently I sounded excited about the Snickers Swirl ice cream flavor of the day, because the women at the drive through told me because I sounded so excited about the snickers that she gave me extra. Something as small as extra snickers put a smile on my face. This women had no idea that less then 24 hours earlier I had just found out one of my babies has cancer. Yet she went out of her way to make a stranger happy. Find a way to make a stranger smile, you have no idea what they are going through. This small, random act of kindness cheered up a mother who is going through something mothers should never have to go through. So, that's what I ask of you, go out of your way to make some stranger smile.
Questions we have gotten so far:
- What does this mean for Jay?
Right now, we don't know. Since we don't know if the boys are identical or fraternal we don't know the implications. So, they are going to do genetic testing to determine if they are identical or fraternal We are going to push to do this sooner rather then later. If the boys are identical then Jays chances of getting Leukemia are greater. If they are fraternal the chances are the same as any other child. If the are identical the onset could occur days, months or even years from now. This is a little scary and overwhelming but we are dealing with everything one day at a time, step by step. I am excited to know the answer to the question fraternal or identical finally!
Being Pregnant:
Yes, if you didn't know we are expecting baby #4 (yes, only one!) in the middle of August. Because of this I have to be very careful of toxins. Any of Chan's bodily fluids have to be handled with gloves so that any medication that may come out will not come in contact with my skin.
Other Thoughts:
Obviously, my thoughts are a little jumbled so I apologize for anything that is worded weird, spelled wrong etc - Deal with it ;) We are extremely thankful that Chan was so quickly diagnosed and that everything feel into place so quickly to determine the diagnosis and start treatment. We know we have been watched over and blessed and know that the Lord has been with us every step of this and that He will continue to be with us throughout this difficult and trying time.
I will try to update as we know things and answer any questions you have. Thanks for being there for us and being a part of our support team through this trial.
How we found out:
Chan started a high fever on Friday March 3rd. It was 103.9. He had fatigue, fever, shakes, rapid heart rate and rapid breathing. He wouldn't eat or drink anything. We went to the pediatrician and was diagnosed with strep. His tonsils were massive, with white sores. He was given an antibiotic to treat.
Chan wasn't showing any real signs of improvement throughout the weekend and into Monday (high fever, fatigue, shakes, rapid heart rate, and refusing to eat or drink. Monday I was on the phone with the pediatricians office trying to decide if we needed to go back in. A phone call from a friend, who was just calling to see how I was holding up with a sick kid, helped me to realize I needed to go back in, and being an 'overprotective mother' was ok :) I called the office right before closing Monday and scheduled an appointment for Tues morning.
We went in Tues morning and they retested for strep (positive) and did a blood draw to test for mono (negative). We received a new antibiotic figuring this strain of strep was resistant to the first antibiotic and that's why he wasn't improving. We received a phone call Tuesday evening from the on call Dr. telling us Chan's blood work came back and we should call his pediatrician first thing Wed morning. We were told Chan had low CBC and anemia. I googled those two symptoms and Leukemia was the first result. I decided that probably wasn't the smartest thing for me to have done because I was going to stress out over something that probably wasn't what it was...
I woke up at 8am Wed and made the phone call to the pediatricians office. They called me back 20 mins later, and our pediatrician was the one who called (usually its just the nurse). The Dr. said that there were more tests needed and that we needed to go to a Hematologist in Madison. I took down the info, and was told we needed to get there immediately they were expecting us. Then the Dr. said they will be testing for Leukemia. I don't remember what was said after that, but went into crisis mode calling my husband home from work, getting family to watch Chan's twin brother, Jay, and little sister Em.
When we arrived at the Children's hospital we were taken right in and talked to. They wanted to do a bone marrow biopsy, and spinal tap. Blood was drawn (very difficult as Chan hadn't eaten or drank much in about 5 days), and chest x-ray was given (to make sure sedation would be safe and no lung problems). Around 2:30pm the biopsy began. They made Chan comfortable and had a volunteer entertain him with an I-pad. Chan was awake during the quick procedure, though he was so out of it from drugs that he wasn't aware of pain or anything. Kindt and I were allowed to stay in the room while the procedure occurred. I had to leave after a minute because all of the people (6) and the beeping of Chan's vitals were overwhelming. Chan did really well with all of this. It helped that he was so tired and drugged that he probably has no recollection.
40 mins after the test, the Hematologist came in with tissues in her hand. I knew right then that the test came back positive. She talked with us for a time, then let us let the information sink in. We called grandparents and asked them to spread the news to the immediate family. We knew we would find out which type of Leukemia the following day (Thursday), so we could ease others fears with having more questions then answers before spreading the news to everyone.
Thurs (March 10) we found out that he has ALL B cell Leukemia. Which was a large sigh of relief. We are told its the best cancer to have if you have to have cancer.
Treatment:
Our initial hospital stay will be 5-7 days. We will likely be discharged Tues, or Wed of next week (March 15, or 16). This is the only planned hospital stay, the rest of the treatments (chemo) will be given as outpatient procedures. Now, we were told that we will be back in the hospital. He will likely develop a fever or illness that will put him in the hospital for treatment and watching over. This is going to happen at least once and most likely multiple times.
Chan had a blood transfusion Thurs early morning (12:30 am). He was also given fluids and antibiotics through his I.V. in his hand to help with the dehydration and strep. He finally perked up for the first time in almost a week.
Today, Friday, Chan will have surgery and a port will be put in his chest. It will stay in his chest for about 3 years through the duration of the treatment. It will not cause any pain, and Chan will have a bump under his skin where the appliance is placed. The port is used to put drugs into Chan without having to do an I.V every time. Chan will also receive his first Chemo treatment today.
Chan is in the initial stages of treatment which lasts 28 days. It is a pretty intense cycle and hopefully will pass with the least side effects and problems. After this 28 days, we will do another bone marrow biopsy, and the hope is that all cancer cells will be dead. Then we go into phase 2 which is making sure that the cancer cells don't form again. We don't know much about that phase yet, because its all dependent on phase 1. The first two phases will take 6-8 months and then we should be in maintenance phase which lasts an additional 2-3 yrs, which is less invasive just making sure Chan stays in remission.
How are we doing:
We are doing o.k. We are extremely optimistic. We obviously have our good moments and bad. I think we are nervous about the side effects, and how our sweet little boy is going to handle all of this. We feel torn between Chan who needs us so much and our other two children, but know that Jay and Em are being well taken care of.
What you can do:
Prayers, and support for us and our family. These next few months are going to be full of ups and downs for all of us. I know it is hard for those who are far and want to help. Knowing you are thinking of us is a lot of help, I am so sorry for the helpless feeling many of you will have. Please feel free to ask ANY questions. I am happy to answer them as best as I can. My husband and I have been labeled as information seekers with the staff on the pediatric intensive care unit so they are used to us asking tons of questions and have been really good with getting us the answers we seek. We don't know what help we will need, but anything will be appreciated. Offers of cleaning my house and making me dinner will always be well received, haha :) Any help with picking up and entertaining our other children will be much appreciated. We are going to have to make sure we help them still feel loved and special while brother is getting so much attention. Honestly though, thoughts and prayers.
Something you can do for Chan and for me is to go out of your way to make someone else feel better. Why I say this: Yesterday, I went home grabbed the things we would need for our hospital stay. On the way back to the hospital I stopped at fast food and got something to eat. Apparently I sounded excited about the Snickers Swirl ice cream flavor of the day, because the women at the drive through told me because I sounded so excited about the snickers that she gave me extra. Something as small as extra snickers put a smile on my face. This women had no idea that less then 24 hours earlier I had just found out one of my babies has cancer. Yet she went out of her way to make a stranger happy. Find a way to make a stranger smile, you have no idea what they are going through. This small, random act of kindness cheered up a mother who is going through something mothers should never have to go through. So, that's what I ask of you, go out of your way to make some stranger smile.
Questions we have gotten so far:
- What does this mean for Jay?
Right now, we don't know. Since we don't know if the boys are identical or fraternal we don't know the implications. So, they are going to do genetic testing to determine if they are identical or fraternal We are going to push to do this sooner rather then later. If the boys are identical then Jays chances of getting Leukemia are greater. If they are fraternal the chances are the same as any other child. If the are identical the onset could occur days, months or even years from now. This is a little scary and overwhelming but we are dealing with everything one day at a time, step by step. I am excited to know the answer to the question fraternal or identical finally!
Being Pregnant:
Yes, if you didn't know we are expecting baby #4 (yes, only one!) in the middle of August. Because of this I have to be very careful of toxins. Any of Chan's bodily fluids have to be handled with gloves so that any medication that may come out will not come in contact with my skin.
Other Thoughts:
Obviously, my thoughts are a little jumbled so I apologize for anything that is worded weird, spelled wrong etc - Deal with it ;) We are extremely thankful that Chan was so quickly diagnosed and that everything feel into place so quickly to determine the diagnosis and start treatment. We know we have been watched over and blessed and know that the Lord has been with us every step of this and that He will continue to be with us throughout this difficult and trying time.
I will try to update as we know things and answer any questions you have. Thanks for being there for us and being a part of our support team through this trial.
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