Thursday, May 31, 2012

May 31, Day +14 - Bitterness

We went to the hospital on the 29th and there are still no signs of engraftment. His ANC is still nonexistent and he received platelets that day (it looked likes chicken soup, the nurses call it yellow jello but it's more like campbells concentrated chicken soup) and only took 30 minutes to administer. 

The last couple of days have been especially emotionally difficult for us.  All the effects of chemo have really started to take a toll on Connor's body and I think he is just physically worn down.  His hair started falling out in clumps and we had to shave his head, his platelets were extremely low so he had some minor bruising and red dots all over his body (petechiae) and mucositis.  The mucositis, big red and purple swollen bumps on both sides of his cheeks) is causing him pain and we are really hoping that it won't affect his appetite (he is not eating nearly enough). Connor  has endured it all well up until Wednesday night when he just couldn't take it anymore.

As we were getting ready for bed at midnight (I believe that C forces himself to stay awake until this hour b/c he sees that as one "perk" for being here) he was very restless and just could not settle down. I knew that something was wrong and started to ask him where it hurt and what was bothering him and he just burst into tears and asked "why me?"  "Why did God give me this body? Why do I have to do this? This is not fair and I am really mad at God right now and I don't think that I will worship him anymore."  I tried to explain to him that life is unfair, that everyone has to have struggles but that I believe that God made him special because he has an amazing plan for his life, that by going thru this hardship now, that God is preparing him for soemthing greater that we don't yet know and that I believe that he will help lots of other people in the future.  And his response was "does God want me to become a doctor or something ? I am NOT going to become a doctor, why would I ever do this to another kid- I will never become a doctor!"   Although this entire conversation was heartbreaking for me at the time, as I was trying to comfort Connor, I realized that these were the same questions that I had been wrestling with the same day for other reasons, and that I needed to hear the answers to these questions also and in some ways it was comforting and peaceful and reassuring to hear my own answers to the unfairness of life.  I am not sure that Connor found much peace that night but he finally fell asleep at 2am (it was a very long conversation).

If anyone has any tips on how I can explain this to him, I would be open to all suggestions. It is at times like this when I wish that I had gone into child psychology or read more self-help books or that we were more religious or spiritual as a family or that I had more faith and conviction in the things that I said. Maybe it was my own struggles with all of the above questions that brought on his fears.  I am glad that Connor was able to get those feelings out, I hope that it helped just to voice them and I hope that he will be able to find some peace with it all.

I also wanted to thank everyone for your comments. I am trying to find a way to reply to each individual comment thread but have not been able to do so. I really appreciate all our friends and people who we don't know who have lifted us in support and prayer.  Thank you so much, it is so encouraging to know that there are so many genuinely nice people in the world.

Tuesday, May 29, 2012

May 29- DAY +12

I hope everyone had a wonderful Memorial Day weekend and was able to spend some time with family and loved ones. We had a very relaxing weekend and managed to stay out of the hospital -YEAH! Connor's hair started to fall out in wisps over the weekend and he would notice it while eating or playing on the ipad. He was so concerned that he would go bald and just didn't want to lose his short military hair. We played it casual and told him that he may go bald that the doctors said that this may happen but didn't make a big deal of it - just tried to brush it away so he wouldn't notice the quantity, but my heart was breaking for him. Finally, on Monday night, the hair started falling out in massive clumps, quite shocking at how much could fall out at a time. Connor was so irritated by the short stubbles and hair all over his pillow and clothes tht he was having difficulty falling asleep. He asked us a few times if his hair was 100% definitely falling out. We told him most likely yes and would he like to just cut it off now and be comfortable. He gave me this sad look and at first said no, that maybe it won't all fall off but within minutes after more clumps falling off, he decided to just do it and we shaved his head at 1:30 am! I can't tell you how proud I am of him for making such a wise and mature decision and the best part is after it was done his comment was "I have never seen my entire head before, let's explore it"- what an amazing attitude! This attitude was exactly what I needed at the time and he showed me so much strength and perserverance that all I can do is Thank God for this amazing boy. (Btw, no tears were shed and he still has a good chance of winning that bet from me). And then he told me that I am NEVER to take a picture of his head - so unfortunately no pictures at this time - but he looks really cute and kind of reminds me of Caillou. We also received word that our 17 year old friend who received his transplant the day before Connor started to engraft over the weekend. We are so happy at the news! Please pray that he will not have any GVHD. We are excited to see what our lab work will show today. We are hoping that with his hair falling out - that this is the first sign of engraftment as well but will find out more this afternoon. I think the doctors are concerned with his platelets and told us to expect a platelet transfusion today but he hasn't had any unusual bruising so I am hoping to avoid the transfusion. Please pray that we are also engrafting and no GVHD and please pray that Connor will get used to his new look. Have a great day!

Sunday, May 27, 2012

May 27, Day +10

We are having a very lazy, relaxing Sunday together as a family. We read books, watched netflix and played a game of Monopoly.  The only sad part to this day is that Connor's hair started to fall out and wisps of it fall out even when you don't touch it. Connor noticed it while eating dinner because he noticed some hair on his plate but didn't really question it too much.  We haven't told him that he will go completely bald and I am afraid that it will be heartbreaking for him.  We are hoping that he will get used to the super short haircut and that it really wouldn't phase him too much when it all disappeared but I think it will be quite traumatic for him.  He doesn't like to facetime with anyone b/c he doesn't like to see himself while talking to people!

Even with the reduced intensity regiment, this whole process has been quite trying, I don't know how other parents face this when it is full blown intense chemotherapy and radiation.  It really gives us a greater appreciation for a healthy body. 

Have a great Memorial Day!

Friday, May 25, 2012

May 25 Day +8

We are back at the Kohl's house!  What a relief - all of his blood cultures came back negative and there was no indication of an infection and since he was fever free for 48 hours we are back to some freedom.  His ANC is basically non-existent, there were no results b/c there was nothing to test so he received a blood transfusion on Thursday. His platelets are at 90 and they say that it is expected to drop some more over the weekend.  We were told to avoid monkey bars and playgrounds in case of falls and injuries and we are to watch for any unusual bruising and call the ER when this occurs.   Connor is trying his best to drink his fluids but we received more bags of IV fluids to administer at night.  This means that he won't be able to get a good night's rest since he wakes up every few hours to go potty. 

I hope you all have a great memorial day weekend!  We hope to have a quiet uneventful weekend with lots of video games and card games.

Good night!

Thursday, May 24, 2012

May 24, DAY +7

I can't believe we are a week post-transplant.  Despite our ordeal yesterday, today is a brand new day and Connor is feeling and acting normally again.  He was out of commission all day yesterday, he was sluggish and pretty much slept all day yesterday until about 5pm. He woke up at 5pm, talkative and alert and he stayed awake until 1:30 am- ready to play!  He had energy to play his video games again and was able to eat a little bit of dinner- a huge accomplishment! 

I know that I am a little biased as I write this but Connor is such an amazing boy!  He is finally learning to look at the bright side of things and was finding all the different reasons why it was good to be in the hospital versus staying at Kohl's house.  He liked being able to take a bath at the hospital, having his own room, the rooms are bright and sunny and he gets to eat chocolate ice cream 2x a day with his meds and he even says that the meds taste better here :)   (At Kohl's house he is on IV fluids at night and he wakes up 3-4 times a night to pee).  I wonder if it is the full nights sleep that is helping with his mood- whatever the reason, I am just really proud of him and so happy that he is choosing to see the glass as half-full.

His numbers are still really low, his red blood cell count is reallylow so he is getting 380 ML of blood transfusion today.  This is to ensure that he gets enough oxgen to his organs and also in case he spikes another fever, it won't stress his heart too much.  His platelets are creeping up so it looks like we may avoid a platelet transfusion- hopefully.  And his white blood cell counts are still non-existent but all par for the course.

I wanted to share this video of Connor having a laughing fit at 12:30 am while watching AFV.    We had a great time and we laughed for a good 30 minutes.  Enjoy! ( i hope it works- it was really cute)
video

Wednesday, May 23, 2012

May 23, Day +6 - back in the hospital

We've hit a bump in the BMT road...Connor was feeling warm to the touch since last night but he still was a bundle of energy so we weren't too concerned. We just took his temperature every hour or so and it was hovering around 99.3 to 100.3.  We were told that if he his temperature hits 100.5 for over an hour than we needed to call or if it hit 101.5.  His temp would go up and come back down to 99 but at 6:30 this morning, it hit the dreaded 101.7.  We ended up at the E.R. by 6:50 and ran into some problems with his PICC line - neither of the lines would flush. The nurses had difficulty drawing out enough blood from one line to do his CBC and the blood cultures to see if there is an infection on his lines.  They ended having to use TPA on both lines to get the blood unclogged - it was a 2 hour process but we are thankful that it cleared up and that he did not need to get an additional IV or shots.  (Connor would see great injustice in that).  He was given more IV fluids and a round of antibiotics and then we were finally admitted to 4West.  We will be in-patient for at least 48 hours to confirm that there is no infection and he also has to stay fever free for 48 hours before we can be released.  Connor has had no energy today, I had to beg to get him to eat a bite of pb&j and some chicken noodle soup and he also declined on twix and kit kats and pepsi.  He really isn't feeling well- my poor baby...

We knew that this was to be expected but you just always hope that you will be the very lucky one where the Bmt is just so smooth and we can avoid platelets, transfusions and ER visits.  Even with the knowledge, it always comes as a shock as the fever escalates and you are walking to the ER.  How does the human brain fool itself into such denial?  I was still hoping that we would be released today.  On the bright side, he is getting a lot of rest today and hopefully he can sleep thru the night. 

Thank you all for your many prayers and words of encouragement!  It really means so much to us. 

Tuesday, May 22, 2012

May 22nd Day +5

Sorry for the delay in updating the blog. It has been 5 days since his transplant and things are just progressing along better than expected.  He is still experiencing some nausea and requires IV fluids at night due to low electrolytes but all very manageable symptoms.  Our biggest battle at this moment is boredom.  We go to the hospital on Mon, Wed and Fri to check all his levels and labwork.  We sit there  wait for all the results in case he requires platelets or blood transfusion.  They say that most transplant patients will require this at some point. 

Please pray that things will continue to progress this well.  We were told that some of the "bad" stuff usually happens around Day 8-20 when the new bone marrow will start to work.  Right now, he has absolutely no immune system, his bone marrow is gone and the new ones haven't started to work yet.  We pray that he won't experience any symptoms of GVHD when this occurs.

Also, please pray for our friend Andrew- he has been in isolation all this time and I can't even imagine how bored he must be. Also, his procedure has been a lot harder on his body so please pray that the side effects will disappear.

Thank you all!

Saturday, May 19, 2012

Sat- May 19 - DAY +2

Connor made some friends at the Kohls house. This is DAY +1 and he is at the park having fun.  Thankfully the park was not very crowded and the weather was perfect for some fun and popsicle.

Friends from OH and Hawaii playing Monopoly!

Everything is still going great!  Connor still has some nausea and requires fluids at home. He just doesn't want to drink too much and only prefers water to soda or juices.  I think he is scared of vomiting.  He still has a decent appetite and I don't think he has lost any weight since we started - a miracle! Both of Connor's friends left today so it was a longer day for him and us and he wasn't as brave at taking his oral meds.  We all met every night at around 9 pm for all the kids to take their meds and Connor would just take all of his without a word.  He felt bad for the boy b/c he had to eat 6-8 pills a night. He has an entire lunch bag filled with meds.  We are trying to convince Connor to start practicing swallowing pills but he is scared of choking... 

He did vomit a little today so we will have to add another medication to his list. He will need continue with his zofran.  The doctors' have warned us that the GVHD and the side effects of the chemo will start to on DAY +8 to +20.  Please pray for NO or minimal side effects. 

Thank you everyone for your continued prayers and support.  All your cards and notes and gifts have given him a sense of gratitude for all the wonderful friends and always puts a smile on his face.  He is still a little self-conscious about his hair but once he gets used to it, we would love to face time and skpe with our pals.


Thur May 17 DAY 0- Transplant Day!

I am so sorry that I have not been able to post this sooner.  It was such an emotional day filled with anticipation, nervousness, anxiety, joy, wonder, gratitude and so many other mixed emotions ranging from one end to the other.  We went to the hospital at 8 am to draw more labs and were told that the donor cells arrived in the morning and that it was at Northwestern hospital getting processed.  I guess they still needed to separate out the white cells from the red cells. It was also confirmed that the donor in Japan donated the old fashioned method of extracting the stem cells from the hip bone versus thru the pheripheral blood.  From my research, the advantages of this method is that there is some evidence that the donor cells engrafts sooner or better, the disadvantage is that you may not get a lot of donor cells.  But given Connor's age and size, we had more than enough donor cells!  Connor just received Zofran in the a.m., had a decent breakfast and was able to just enjoy the day in the hospital.  The cells finally arrived around 1:30 and it slowly was infused at 1:57.  The whole process was rather anti-climatic- I don't know what we were expecting- I knew what the process entailed but I still just expected more fanfare because this was such a HUGE HUGE day for us!  I wanted fireworks, balloons, banners, candles, a marching band, but we settled for cupcakes from Swirlz. It was a wonderful day!
Our very Fun nurse Margaret with his new marrow! Look at the excitement!


Our family portrait of Connor's re-born birthday.


These are the stem cells towards the end of the infusion. You can see how the white cells are separted from the red cells. It was all very fascinating!
Connor sleeping thru the entire process.

We were released that same afternoon around 4pm. The whole infusion lasted a little over 40 minutes and they just wanted to observe him for a while.  Connor also received some benadryl prior to infusion and he slept during the entire time.  But of course didn't sleep for too long.  I don't know if I have mentioned this previously, but Connor has been going to bed at 2:30 am due to all of his naps at the hospital and it is exhausting.  We usually stay up and chit chat or we play monopoly on the ipad or watch sponge bob or read.  He really needs to get on a regular schedule! 

Once we were released from the hospital, it was another gorgeous day in Chicago and Connor and his dad went for a nice leisurely stroll around the city.  It is good for him to get some fresh air and good to get some exercise even if it is just a walk. 

We are eternally grateful to the generous person that gave so willingly of himself to save our son's life and for giving him a chance to live a long and healthy life.  We cannot wait to thank him in person. 

Please pray that he will have NO GVHD! Also, that his nausea will subside and that he will better tolerate taking all of his oral medications and absolutely NO infections.

Thank you and God Bless!

Wednesday, May 16, 2012

Wed May 16 DAY -1

Connor is doing great!   We were a little discouaraged this morning after the incident with his PICC line and he was just exhausted this morning.  We also learned that he will need to add 2 more really nasty medications to his already extensive list and we weren't sure how we could possibly get him to take them all especially since one of them will be administered 3 x a day.   Our room with our few belongings is getting disorganized and it is driving me crazy!  It is very time consuming to disinfect everything everyday and all the paperwork that we continue to receive is also very difficult to stay on top of.

In preparation for his stem cell- Connor and his dad went to get their haircuts.  We are slowly trying to get him used to having short hair and he should be used to seeing all these bald heads in the hospital but it doesn't seem to phase him so we were hoping for the best.  He came back from his haircut angrier than he has ever been, I heard him ranting all the way from the first floor.  He was saying how much he hates chicago and how much he hates the girl who cut his hair and that he wants her to move to China, very very far away from him and he never wants to see her again and furthermore he will never let a girl touch his hair ever again!  It ruined his entire afternoon.  I felt terrible that cut his hairprematurely b/c his hair had not started falling out yet but we thought that it would be less traumatic this way. 

I don't think he liked this look very much.
Not a great look. He is now bald.


I was able to beg a smile out of him. He still doesn't like it much but I think he is adorable!

He made a friend yesterday named Hunter who is from Ohio and is here for some problems with his liver and an enlarged spleen. They played DS together and we heard them giggling in the living room.  It made his night and they were able to play together for a few hours and ate dessert together.  Hunter is able to swallow his pills and did a little demonstration for us and Connor showed Hunter how he takes his meds and he did it within 2 minutes without one little complaint!  Amazing!  We are going to ask for an audience every night for meds.  We bought some herseys syrup and had him keep that in his mouth and swallow the really gross meds after it and I think it helped a little bit.

Thank you all for your prayers, his PICC line looked really good and there is no sign of infection.  He has had no fevers and he ate half a box of mac & cheese and asked for some snacks again.  A great night.  He still probably is not getting enough fluids so we may need to get homehealth to deliver some IV fluids in our room for the weekend but so far it is going great!

P.S. I have changed the settings so that anyone can leave a comment. Please let me know if you have any problems.

Good night! We are SOOO THRILLED for tomorrow.

//

Tuesday, May 15, 2012

Tuesday May 15, Day -2

We had a great morning today.  He was able to get his zofran via IV fluids in morning and then the cocktail of tylenol, steroids, antibiotics and benadryl which put him to bed right away. He was able to get some deep rest and because of his vomiting and lack of fluid intake he also received fluids via IV.  Upon waking up from a 4 hour nap, he was in the mood for mcdonalds and was able to eat a few fries and a couple of bites of cheeseburger and a few sips of sprite- HOORAY!  We asked for another round of zofran via IV and he was able to eat a decent dinner and even have some dessert.  It is 11:40 pm and he asked for a snack and is now drinking juice and some crackers.  Another HOORAY!

We had a little incident with his PICC line today. He got wet while he was in the shower despite wrapping it 2 x with press and seal and an Ace bandage.  I was horrified as we were unwrapping the thing b/c there is a huge risk of infection thru the PICC line.  We called our Dr. and he told us that we can change the dressing if it is wet but that if it is going to get infected, the damage was done. (Connor was very concerned and told me that I shouldn't touch it b/c I was not a professional but he also did not want to go to the ER)  It was very stressful and I just pray that it doesn't get infected.  The only small comfort that I have right now is that he has been taking 2 of his oral antibiotics since Sunday and also has received 2 rounds of antibiotics due to the fevers the other day so he has a little bit of protection.  We ran a CBC on him today (before the PICC line incident) and his numbers are really really low so he is at risk. Why couldn't this thing get wet on in the first week? UGH!!! We are going to have to be more cautious from now on.

The stem cells should be en route right now and will arrive here tomorrow morning.  We also learned that the donor donated thru the old fashioned way of actually getting the cells from his hip bone versus taking it thru the blood. There has been research to show that this is more effective in terms of grafting so hopefully this will work in our favor.

Please continue to pray for NO Infection of any kind but especially in the PICC line ( i don't think i could handle the guilt) and that there will be minimal side effects from the chemo and NO GVHD.  GVHD can be mild or acute - we really are praying for nothing at all.  We feel very blessed by our BMT progress so far and we just pray that it will continue to be smooth sailing for Connor. 

Connor is being really brave and generally happ throughtout the day, it only becomes challenging when he has to swallow medicine.   

Thank you all and have a great night!

Monday, May 14, 2012

Monday May 14, Day -3

I can't believe this week is almost here! It has been such a long ordeal and we are so close to getting his stem cells this week!  How crazy is that?  Some kind hearted soul in Japan is getting ready to donate his cells tomorrow, I pray that God will watch over him and his family as he gives of himself so generously and bless them. 

We were released from the hospital a little after 9pm.  Connor was so happy to get out and have some fresh air and we sat outside and enjoyed the moonlight and fresh air for a while in front of our house.  It was a beautiful night.  Everything was going well, we were having a somewhat early night, getting to bed before midnight and all was in order. At 2 am, Connor started to projectile vomit again and started to run a fever of 102.5.  We were praying that we did not have to go to the ER, called the stem cell unit and they told us to give him tylenol and watch and wait until our appt at 8am.  We did as told but the fever was not subsiding so Steve and I were just using wash cloths to make him comfortable and Connor was doing his best to try and get some sleep.  Needless to say, none of us really went back to sleep for too long but we managed to avoid the ER last night and came to the stem cell unit.  He was given more zofran, benadryl, steroid and an antibiotic just in case he was developing an infection and he promptly fell into a deep sleep while receiving his ATG.   He now has no appetite, he is scared of eating b/c he doesn't want to throw up and he even said no to popsicles and gummy bears ( he must really be feeling yucky). 

It's another beautiful spring day here in Chicago and Connor and his dad are out for a walk.  Connor is too weak to walk so he is in his mcclaren stroller which we have had since he was 4 years old.  Hopefully the fresh air will do him some good and that he will be able to work up some sort of appetite for dinner.  I am at "home" trying to figure out something to feed him for dinner. The biggest challenge is trying to get him to drink more liquids so that he doesn't have to be hooked up to an IV at night.  He has been such a good boy.  Even in the midst of his fever and vomitting yesterday, he managed to say thank you and give me sweet smiles and to say sorry for making a mess.  I was afraid that he was getting a little too spoiled in here but am glad to see that his tenderness and kindness is still there.

His bedhead from sleeping off his benadryl today :)
Please pray that he stays fever free tonight and that he is able to keep down his food and liquids tonight.  Hope everyone had a wonderful mother's day weekend!

Sun May 13th, Day -4

Picture with his cousin Hannah before the vomitting on Sat.
So I spoke too soon yesterday about Connor not having any side effects.  He started vomitting from the cumulative effects of chemo yesterday (Sat) 2pm all over himself.  It must have also coincided with his anti-anxiety medication, ativan, wearing off because my sweet little boy was in a rage for half an hour or more. He was just so angry and just yelling whatever came to his head and most of his anger was directed at our nurse Nikki who had the unfortunate duty of giving him the tylenol that made him puke.  And then the rest of his anger was toward the hospital and the person who built the hospital and that he will never like him and will never be grateful towards the "stupid" person who built the hospital and there is "nothing that you can do about it".  (as he was shouting the "s" word, he gave me this defiant look and had a little smirk when I didn't scold him for it.)  He still has a decent appetite and asked for a hotdog at midnight. 


Sunday was pretty much the same, woke up to more ativan. The ativan is necessary so that he won't have seizures from his bulsufan.  I requested something else, anything else, but this is the one drug that will counter the seizures. Not looking forward to it wearing off tonight.   He was also given more zofran, tylenol, benadryl and a steroid to counter the effects of the new chemo drug ATG.  He vomitted again today but it wasn't as dramatic as yesterday, we managed to have the bucket handy the mess did not get on him.  And unfortunately, it was our same nurse Nikki but he managed to contain himself this time :) I think he was embarrassed about yesterday and was being extra polite to her today.  Most of his day consisted of playing x-box with his dad and sleeping off the benadryl. The benadryl really helped to contain the rage from the ativan tonight and there was no rage, just a little sadness and homesickness.  He did great with the ATG, they had to monitor him every 15 minutes for the 1st 2hours to make sure that he didn't have any adverse reactions such as a rash, fevers, blood pressure, heart rate and it all went as smoothly as possible except for the vomitting so now they are giving him zofran every 4 hours instead of 6.    We get to go home to the Kohls house tonight at around 9pm.  YEAH



Saturday, May 12, 2012

May 4-5th, pre-transplant weekend

I am sorry that this took so long to post but we were so busy preparing to come to the hospital that I didn't have a moment's time to write in the blog.  We have SOOO many people to thank for making his farewell party so special and amazing!

Friday - His classmates with the help of Mrs. Copersmet and Mrs. Sturgeon all came up with the idea of throwing an ice cream party for him and the kids all brought in items to fill a HUGE basket with things to keep him busy at the hospital along with really sweet cards and letters.  And the biggest surprise of al was a video montage and pictures of all the kids making funny faces or telling jokes or just saying something really encouraging to him.  Thank God Mrs. C sent home a copy the week prior to the party b/c I cried my eyes out the first day and had to watch it everyday to sort of de-sensitize myself to the sweetness of it.  I still teared but couldn't cry b/c Connor kept looking back at me to see my reaction.  He tried very hard not to cry either but did break down when we were in the safety of our house.  The kids were so amazing and we can't thank all the parents and Patton enough for giving him such a warm send-off. 

Saturday - Connor was a roller coaster of emotions.  He wanted today to be his "BEST DAY EVER" but he was just a little anxious and nervous all morning.  I know how he felt b/c throughout the process we had managed to stay so busy that we didn't think about the BMT too often. It was always in the back of our minds but didn't really have time to dwell on things,  just had to prepare.  Connor was just busy trying to play with everyone that he could.  But the weekend of, I was a bundle of nerves, I was also really nervous (could be that I still had nothing packed) and anxious.  And so I spoke to him in a serious tone b/c we were running late to get things prepped for our party- he started crying and told me that i was ruining his day and why was I mad at him?  and then he changed it to I was ruining his morning.  After all that work and planning, I am the one that ruined his day :( that sucked).

Jedi Training party -  We have to thank Adriane Bean from the 501st Legion for coordinaing all the wonderful volunteers who came to make this party out of this world!  I can't even begin to describe to you how AWESOME it was to have all of these characters at the party. The reaction of the kids was just over the top! They were in awe and then pure excitement! Adriane also helped to provide some games for the kids to play.  And Thank you to all my friends who helped to coordinate the kids for these activities for me. It was very difficult to manage 50 kids. i really needed a microphone that day.

Block Party - Connor came home from his Jedi party to a block party on our street with all of our wonderful neighbors and friends.  Karie even managed to have the fire dept stop by with the trucks and the kids were able to try on the heavy hat and sit at the wheel.  He just loved eating popcorn from Mr. Palmer's movie theatre popcorn maker (he ate 5 bags full) and riding his bike on the streets.  He says that the block party is one of his favorite days of the year b/c he gets to ride the streets.  So we are so thankful that it didn't rain and that he was able to get that in before coming to the hospital.

Sunday - We wanted to thank Delaney and Carson for coming to play with Connor this morning. They all played very nicely together and it allowed steve and I time to really concentrate on packing and getting things organized.  They stayed until the very end and it was a really nice distraction for Connor.  We then went to drop off Bailey (our dog) at my parents house and I was expecting some tears but Connor bravely said Bye and told him will see him later and it was time to head to lincoln park.  We ended the weekend with watching The Avengers in 3D and he just loved the movie.

It was such a wonderful send off weekend for Connor.  We can't Thank YOU all enough for making him feel so loved and special. The memories from this weekend will be with him for a long time and will help him to be extra brave and have something to hold onto while he is undergoing this process. 

Thank you!

day -7, May 10th. Thursday.

Hello Everyone,

We have another short day today.  He is only getting fludarabine over 90 minutes.  I can't believe how fast the days go by here and that I just don't have the time to write on this blog?  Sorry for the late and short posts but this BMT process really has been smooth sailing and all of our prayers are being heard and there is no news to report (THANK GOD). 

He is getting used to the Kohl's house and is now resolved to being here.  I think the new x-box games that his uncle bought him has really helped pass the time.  He is creaming his dad and i in Marvel v. capcom?  I don't know how he figures these games out so fast but he has been beating us 20 to 3.

Thanks for reading.

DAY -8, May 9th

Today was a GREAT day!  We were able to start at 11am today and found out that our treatment would only last 2 hours. 

The effects of Ativan still had not left Connor and he woke up Mr. Grumpy.  The first question out of his mouth was "when are we going home?"  We got to the stem cell unit and my shy Connor started to tell all the nurses how much he HATES this hospital and everyone in it.  He told everyone that came into our room that he hates it here and he wants to go home in his toughest pouty voice.  He asked for a sledge hammer so that he can break the hospital down and now his anger is directed to the person who built the hospital and that the person who made it must be a terrible person for making kids suffer and that he is not grateful at all and will never be grateful.  Then it got ugly and he directed his anger at himself and said "i hate myself" and I wish I was never born.  We then had to have a serious discussion about why he was here and that even though he doesn't feel sick, his body is really sick. And that without the hospital and the wonderful nurses that people like Andrew would not be here.  This quieted him down.  We'll see what tomorrow brings.

We were able to enjoy our day and go visit with my cousin Seong and his cousin Caden and new baby Ryan.  He was able to enjoy ice cream and even go to the park for a bit.  He was very happy to be out and about and he just LOVED holding Ryan.  He was helping me feed him and had Ryan on his lap and was just sitting there for a while and I asked him if he was bored? He said yes it is a little boring but that he liked it and he sat there for another 5 minutes just rocking back and forth with the baby and then said "OK, this is now really boring, you can have him back :)"

We came back to Kohl's house and we were surprised with free make your own pizza kit from Homemade Pizza Company (how nice is that?) and we saw our friend Andrew and Joe.  Andrew was sweet enough (Andrew had a very rough day with round 4 of radiation) to play x-box with Connor for a good 20 minutes while the parents ate some pizza downstairs. Connor was so happy to be independent and to have someone else to play with.  Connor finally came downstairs again by himself and said that Andrew was tired and went to his room and that he would like to make his own pizza now. So he had his second dinner with some pears and ice cream at 9pm and was in a wonderful mood.  ( Andrew had to go to the ER last night b/c he had chills and was just feeling terrible so please say some prayers for him, he still has 4 more rounds of radiation followed by 4 days of intense chemo). 

After his second dinner- we had to wrap up his PICC line and he had to take his shower (very important to shower every day due to all of the chemo) and we played X-box and read some books. He mentioned home once that night but said that the X-box made it fun for him and he didn't even think about crying.  We are making some real progress here:)



Saturday May 12th- DAY - 5

Connor is in a great mood today with the help of ativan - he loves the feeling of being "wobbly" and woke up giggly and smiling.  He is getting his first real dose of Busulfan, he received a test dose on Tuesday.  He is also getting his last dose of Fludarabine today as well so a long day tied to the machine.  We are so lucky that our procedure is mostly outpatient, the other kids on this floor cannot leave the 4th floor once you are inpatient and there are others who are in complete isolation and stuck in one room the duration of their treatment.  With each passing day, we are so happy that we chose the RIC route. 

He is so excited that his cousins will be able to visit him today so I think we will have a lot of giggling and laughter coming out of 4 west today.  He is always happy to see his cousins and it is always loud when they get together but mix the ativan in there and I am not sure what to expect :)  I will try to get some good videos and pictures to post later. 

Thanks for all the support and comments and prayers and friendship.

Thursday, May 10, 2012

May 8 - Day -9

Today was a very long day at the hospital, 9 hours! He received a test dose of bulsulfan which can cause seizures so as a precaution they administered zofran for nausea and ativan, an anti-anxiety drug to prevent seizures.  Connor noticed the effects right away and said that he doesn't feel "right" that he feels like something different is happening and then he started slurring his speech and just acting very goofy- it was really funny. The nurses warned us that as the ativan leaves the body that some kids get angry or will cry uncontrollably, they expected that to happen at 4 or 5 pm.  It finally hit at around 10 pm when Connor was just so homesick and cried himself to sleep.  He first was trying to hold back his tears due ot our bet and then he just kept talking about how he missed home and he started pouting more and I told him that it was OK to be sad and to cry, that we know that he misses home. And then he said I can't cry b/c of the bet and I told him that he can get a pass and we finally negotiated to 10 passess while he wept his heart out. He is now trying to work up to 20 passes :)
He doesn't have much of an appetite today - but no mouth sores or nausea. He hates taking the oral medicine at home but he is tolerating that OK too.

Thanks for your prayers and comments.

Monday, May 7, 2012

Reduced Intensity Bone Marrow Transplant (RIC)

Connor is going to be going through reduced intensity bone marrow transplant (RIC).  There are not too many pediatric hospitals that performs RICs at this time, I think there were 3 the last time I checked and we happen to live near one of them. Connor has been receiving IVIG treatments since he was 2 years old, first every 3 weeks for 6-8 hours and as he got older and gained some weight it is every 4 weeks and can be out of here in 5 hours (on a good day).  With IVIG therapy, he has managed to stay healthy, some would say that he is the healthiest kid on our block, but we know that he can't stay on this forever as the median age of survival for people with his disease is only 25 years.  So upon his diagnosis of X-linked hyper IGM at age 4, we have gone thru the process of finding a bone marrow match.  Our biggest dilemna in all of his was which hospital to have the BMT at.  He was diagnosed by Cincinnati Children's Hospital ( a wonderful hospital that I would recommend to anyone)  that has a wonderful track record of bone marrow transplants and does over 2000 a year. 

Cincinnati has a protocol that has been very successful for them. It is the same 10 days of chemotherapy but at more intense levels than Children's Hospital in Chicago.  They are VERY VERY strict with the entire process and it would require 100 days of inpatient isolation and followed by up to 6 months of relocating to Cincy. And then coupled with the all the harsh side effects of the intense chemotherapy was just too much to bear.  We had to make this decision that will affect the rest of his life and his ability to have children, his ability to learn and his overall future health.  The chemo is so intense that it could potential harm his liver and other functions permanently. How does a parent make this decision for an otherwise perfectly healthy and happy being? 

Children's is one of three hospitals (at least in 2008) that does Reduced Intensity Chemotherapy (RIC) in pediatrics.  We had so many doubts and questions that we met with the stem cell team at least 5 6 times over the course of 3 years to try to get a definitive answer on what we should do. Children's has a great success rate on RIC for children with immunodeficiency but unfortunately these results have not been published and due to privacy issues, it was difficult to really believe the stats due to the very small sample size of under 20 immuno patients being treated.  Ultimately, there were no definitive answer- it was all based on a cost-benefit analysis.  We pray each and every day that we made the right decision, that this decision was led by God. We pray that this BMT will take so that we don't have to go to Cincy for the full intense BMT procedure.

I will try my best to tell you our entire experience with RIC at Children's so that other parents' can make informed decisions for what is right for their child.  And on that note, Connor's disease mostly presented itself in ear infections, he has had one lung infection and all the rest were in the ears.  He has had neutropenia since he was 4 years old but has not been treated for it since he has been infectin free.  Also had some GI issues where he had soft stool and diarrhea often and had failure to thrive due to weight loss from age 3 to 4.  His GI issue was resolved thru a homeopathic remedy. His donor match is a 32 year old male 7/8 match with a mis-match at the A-loci. 

Please pray for peace and healing!

Pre-Transplant Testing 4-23-12

Hello everyone,
I have to be honest here- I am not much of a blogger - and don't really know what I am doing. And we as a family are the the worst at taking pictures so I will try to include more pictures as we go along but not sure how to do that at this time.  I started this to update everyone on Connor's BMT journey as we have received so much support, encouragement and prayers from wonderful friends and family along the way.  So many people helped us to run Bone Marrow Drives to find a match for Connor and I only thought it was fair to share the transplant journey with them as well.  Also, in my own research on Connor's disease and bone marrow transplant process, I have read many blogs and caringbridge pages that have helped me have a better understanding of the disease and the process and I wanted to be able to pay it forward to other parents who may have to make the tough decisions that we have had to.  So here goes...

After spending a wonderful week in Denver Colorado playing with his 5 cousins, Connor came back on April 23rd to spend the entire day getting tested, Echocardiogram, Audiology, Pulmonary Function, 24 vials of labwork and chest and sinus x-rays.  We are still waiting for some of the results but he was a true champ!  He was happy to be playing his lego star wars to his hearts content.  Then he spent the next day all day at the hospital getting his IV infusion and then the 25th back for a visit to the ENT.  He is now sick and tired of his DS and is happy to be playing outside with his friends. The DS and electronics only lasts for so long. Found out that he has a little bit of hearing loss, maybe due to all of his ear infections as a baby or it could be the minor fluid in his ear.  We are hoping for the latter but now he has a good excuse when he "doesn't listen" to us :).  We found out thru the ENT that this will not delay the BMT. 
We also had a good meeting with our transplant doctor, Dr. Tse, and it was all the formalities of signing paperwork that really made it seem like it was OK to breathe a sigh of relief and that this transplant will really happen this time.  It is also so very scary at the same time b/c as part of the contract signing process they warn you of all the side effects, which includes, Graft versus Host Disease (GVHD) where his body will reject the donor's stem cell and the symptoms can be as mild as a skin rash to permanent liver disease and possibly death.  Then there are all the side effects of receiving chemotherapy for 10 days.  We are so happy that there is this generous wonderful donor in Japan who is willing to donate his stem cells to help save our little boy but at the same time it is so scary since Connor has been relatively healthy since starting his IGg infusions.  And now we are going to make him sicker than he has ever been and have to explain to him that this is all for his own good for his future health.  How will he be able to understand any of this when it is difficult for me to wrap my brain around what we are doing?  We know that the journey ahead is going to be a very long and difficult one and know that we have NO CHOICE in the matter, I just hope that Connor will also see it this way when he is older.  And that he will find some peace with God's plans for his life and that something AMAZING is at work here. 

If anyone can tell me how to add some pics to this thing, that would be very helpful.

Thank you.

Day -10 (1st day of Chemo) 5-7-12.

Hello Everyone,

We had a wonderful weekend prior our BMT journey and I will write about it soon but I just wanted to let everyone know how it is going so far.

We came to the Kohls house yesterday and we got really lucky because 4 familes had checked out (it houses 8 families) over the weekend. So we were able to get one of the larger rooms (about the size of a dorm room) and have the entire 2nd floor sitting area to ourselves.  But most importantly, we were able to roll the TV from that room to our room and connect the X-box to it.  This one thing has made the entire process bearable for Connor b/c he has the whole lego star wars game to conquer.  So far, we have only met one other family in passing, but i think their infant son (2 weeks) is going thru BMT.  How devastating is that?

Connor started his day very very early today -7am! As most of you know, we are not morning people but he was very cooperative and generally in a good mood-for 7am!  We started the day by inserting his PICC line where 2 tubes are inserted in his right arm and has a line leading to a large vessel near his heart.  This is where they will draw all of his labs and where his chemo will be admitted.  So we told him that he would fall asleep within 10 seconds of getting his meds - he made a bet with Steve that even though he was getting sedated that he wouldn't fall asleep for at least 2 minute of getting his drugs.  Then they went thru a whole negotiation process and it was settled at $50.  He won - he didn't sleep at all and was talking about star wars the entire 30 minutes of his procedure.  The nurses said that they will give him an anti-anxiety medicine and another drug where he wouldn't remember anything but the first words out of his mouth were about his bet! The nurses don't know my son - he never forgets a bet :)  On a side note, he got me to bet him $2000 (it started out with $100 and then he worked it up to $2000 over the course of 2 days)  that he would not cry during this entire process, so far he is winning :) I hope he can win that bet, it will be the best $2000 I ever spent.  And he is saving up for a "real" Light Sabre.

He is a little bit bothered by the PICC line- doesn't like having it hanging out of his skin, doesn't like it bandaged and it generally seems to be hurting him a bit.  He complains a little bit about it and then it is usually followed with a request for candy.  Very clever...but it's going to be sad because in a little bit even candy won't make him feel better. So we are letting him eat whatever he wants while he still has an appetite.

He had his first round of Fludarabine - the first of his 3 chemo drugs.  it was administered over 3 hours and during that time he asked at least 6 times when we could go home. It is heartbreaking to tell him that we will be here a little bit longer.  But so far no side effects yet- Thank God. 

We go in for a 2 different drugs tomorrow, the same Fludarabine and add Bulsufan.  The nurses warned us that it is going to be VERY LONG and difficult day. They are going to test his body for his tolerance to bulsufan and then he will get 3 rounds of that over the weekend.  From my research, the bulsufan seems to be the most toxic of the 3 drugs and we are very nervous about it. 

Thank you everyone for all of your friendship and support. Connor has felt so loved and special over the weekend and I know that he is being especially brave due to your encouragement- and the $2k- Of course!

Personally, Yesterday was very difficult.  I had managed to stay so busy the week prior to today that I really didn't have a moment's time to dwell about it.  But yesterday, I just got really nervous, jittery, scared and teary eyed for no reason.  The anticipation of the process was so overwhelming.  But I am much better today now that it is over. And now the worry about tomorrow begins.  I really need to learn how to knit or something to keep my mind busy.

I am still learning this blog thing but I have tons of great pictures from our weekend that I will try to post.  We have so many people to thank and acknowledge. Please feel free to pass this blog to your friends.

Thanks everyone- we love and miss you all!
The Lim Family