Sunday, November 4, 2012

Happy 8th Birthday!

Thanks to Connor for making the past eight years the best years of my life!

We are so thankful to be celebrating his 8th birthday!  It has been such a tough year for him and our family that it is so nice to enjoy some happy memories. We all played laser tag and went to gameworks for dinner - it was a very action-filled day. 

Connor, you are the best son that any parent could have asked for and we are so very proud of you!  You bring joy to our lives every day and we are so lucky to be your parents.  Happiest of Birthdays my beautiful baby boy.

P.S. We are continually working on more bone marrow drives so if you or your organization are interested in hosting a drive-we would appreciate any and all assistance. 

Sunday, October 7, 2012

DAY +144- Appreciating the small things

I am sorry that it has been so long since I last posted- Connor is still doing really well and is as happy as can be.  In the past 2 months we have been able to enjoy:

1. His PICC line was removed right before school-he hated his line and is so happy that he doesn't have to get all wrapped up to take a shower and he can climb trees and monkey bars without his mom hovering over him.

2. Connor started his 2nd grade with the rest of the class and he also got his former Kindergarten teacher, Mrs. Buch- who is just the NICEST teacher.  He is thriving in 2nd grade despite being separated from his 2 best buds and we are so grateful that he is able to go to school.  I am especially grateful because I don't think that I am the home-school type of mom-i just don't have that creative gene that makes a child LOVE learning, I am more of the workbook page mom-boring!

3.  Connor only has to go to the hospital once every 4 weeks- he now needs to get "poked" again for his infusions but now that he knows the alternative is a PICC line- he does not complain at all about getting poked. He was always very brave before but he would always question why he has to go through this and would express his displeasure-but now he is just a real champ!

4.  He is able to participate in some activities again- he is joining cub scouts and we may be selling some wreaths in the near future :) He looks really cute in his uniform and we are hoping that he will be able to go on the camping trip this weekend. 

5.  Connor's hair is starting to grow in thicker and much darker then before.  It is actually prickly like Asian hair whereas his hair before was very fine and soft.  He had this one little spot of blond hair on the back that is not growing back but it's OK.  The rest of his hair looks fantastic.

6.  We are scheduled to take our first professional family pictures in almost 6 years next Saturday.  We were so lucky that my cousin cancelled her session and we were able to get in with an awesome photographer. I am stressing out about outfits but it's all a good stress. 

7.  We had our most dreaded conversation with Connor, where we told him that his BMT failed.  I had slowly been planting the seed that nothing was guaranteed but we were waiting to pass the 100+ day to make absolutely certain that a miracle didnt' happen.  It was a conversation that I feared but as always, Connor made it so easy.  He took it in stride, let it digest for a day or two and then started slowly asking the hard questions.  I thought there would be screams and tears but it was all very logical.  He then told me that he didn't want to have another bmt right away b/c he lost so much of the summer and that maybe when he was 10 years old he could do it again. 

8.  We are planning his 8th birthday party!  What a celebration that is going to be! We are so lucky!

I am really trying to embrace and appreciate all the 'moments' in our daily lives.  I have given up on figuring out what the greater purpose and plan is. I am trying to find peace in the fact that I am where I am supposed to be and Connor is where he is supposed to be.  That we are only promised today and we just have to laugh more, play more monopoly, have more tickle fights, thumb wars and cuddles. 

We are still facing many challenges and ask for your prayers specifically for:

Joe Park and his family - it has been a little over 3 months since Andrew passed and they are walking in his honor on October 20th and raising money for the Leaukemia and Lymphoma society.  I can't even begin to imagine the pain this night will bring upon them.  If you would like to support them pleas click on the link below.
http://pages.lightthenight.org/il/WSuburbn12/JPark

Nancy Bender - she was Connor's Nanny for almost 2 years when we first moved to the suburbs.  I may have wrote about her before, but she suffered a massive heart attacke at 52 years old (shortly after we found out about Connor's bmt failure).  She has been in and out of the hospital for as long as Connor was in the hospital. Her only chance of long term survival was a heart transplant. We just received news that she is not a candidate for heart transplant and she was released from the hospital.  She has endured so much during this past few months and she is teaching us that it is all about the "quality" of life and not the quantity of life.  Connor LOVES her with all of his heart and we haven't had the courage to tell him what all of this means. My heart breaks for him and for her.  She has been critical in brining him out of his shyness and she has introduced him to so many adventures- and we will never be able to play monopoly without remembering the hours and days she spent playing that game with him.  As he grows older and memories fade, I am certain that Connor's earliest memories will involve Nanny.  He talks about her everytime he sees Pepsi or green gummy bears or anything Disney.  Please pray for comfort and peace for her and her daughters as they go through the most challenging of times.  Please pray that Connor and I will get over our congestion and sore throats so that we will be able to visit with her again.   

Peter & Kim Cho - they are waiting for further testing and results from her PET scans to see if she is still in remission. The first 5 years are critical - please pray that she is still in remission.  We need to have one of our three stories end in a good way! (The Chos introduced us to Andrew's family as Kim was undergoing chemotherapy during her battle with cancer, and shortly thereafter Connor and Andrew had their bone marrow transplants - so it always felt like our journeys were intertwined).

Connor's immune system is stalled. The good news is that it hasn't gone down but there has not been any movement in any of his numbers.  His labs almost look identical from one month to the next which is not good b/c his immune system is only half of what it was pre-transplant.  He also has a cough, congestion and sore throat but no fevers. All symptoms of a cold but it is now going on 1 week and no signs of improvement.  We are waiting for our next labs in October to see if there is any change and then will have to make a gameplan before the flu season hits here. 

There has been so much HOPE and JOY followed by such tremendous PAIN and LOSS that it just doesn't make sense.  But I am trying to live for each moment and be forever grateful for the memories that I am sharing with my son.   I am learning to embrace receiving help and love from all the wonderful friends, family, neighbors and strangers.  I am really enjoying planning for the future (we were "stuck" with this disease and bmt search for almost 4 years), we are hoping to go to Cali for Thanksgiving and a trip to Disney world is calling us. 

Thank you everyone for sharing in this journey with us-our burden was made lighter by your friendship. 

Friday, August 10, 2012

DAY + 86 - Heading in the right direction

Happy August Everyone-

I can't believe how fast the summer flew by.  The month of May moved so agonizingly slow for us and the rest of summer seems to have gone in the blink of an eye.  I guess like all things...time is all about perspective. 
We finally have some good news!  Connor's counts are going up- they have not dropped for the past 3 weeks and his WBC is in 2.1 range.  Still very very low but so encouraging from a month ago when it was almost non existent at .34.  His Red Blood cells are still very low and he will most likely continue to need blood transfusions but that is OK.  His platelets are also up from 26 to 40 and he probably will not be needing his "yellow jello" anymore.  AND wait there is more... THE BEST news is he will be able to start school with the rest of his 2nd grade.  I don't think he will be getting the perfect attendance award (his goal before graduating Patton) but so thankful that he can start with everyone else and feel normal again. 


Thank you everyone for all your love and support.  We are excited to go back to "normal". 

Tuesday, July 31, 2012

Day +76 -

I am so sorry that I have not updated sooner but I was so tired of updating the blog with bad news and didn't want to be Debbie Downer so was waiting for something good to write about.  The good news is that we are at a steady holding pattern.  Connor has been on and off G-csf a couple of times for 5 day stretches and his numbers went sky high (WBC=11,000) but as soon as we took him off G-csf it dropped down to 1,000.  It is much better than the 300 range that he was at when we were discharged and so he is no longer on low bacteria diet and we have been enjoying fresh berries and cherries and it is just so nice to have him enjoy food.  Connor continues to need blood and platelets on a regular basis so his PICC line will stay in and we are still unsure about school in the next few weeks.  We are praying that he will be able to start with his classmates.

I hope everyone is having a happy summer!
Thank you so much for all the love and support!

Thursday, July 5, 2012

July 5-Counts continue to drop

We went for more labwork and his counts have dropped to very low levels again.  We stopped administering G-csf on Sunday and in 5 days time his numbers have dropped dramatically. He needed another blood transfusion today and will most likely need platelets on Tues.  The doctors have decided to continue G-csf again until our next appointment and then based on those numbers will need to determine if we will need a bone marrow biopsy to see what is truly going on in there.  They all seem a bit concerned that his body is not able to sustain production of his immune system but at the same time keep encouraging us that his counts are not at 0, close to it, and that there is some production- but who knows if it is due to all the blood and platelets that he gets on a weekly basis now?  It is difficult to stay optimistic especially since Connor is only the 2nd patient undergoing RIC at Children's whose bmt failed so they just don't have a lot of data for us to review.  Can you believe he is only the 2nd child??? SO FRUSTRATING!!! Pleaes don't get me wrong, we accept what has happened, what choice do we have afterall, and we generally have very good days BUT I do have these moments where I just look to the universe and say UGHHHHH!!!

What is really scary is the decision that we have to make about a second transplant. I ran into a mother of a 12 year old son who is suffering from acute GVHD on his skin.  I have read about that being a possibility but until you talk to someone you don't really understand what GVHD of the skin means...she described it as the entire skin suffered from burns and her son is in excruciating pain and so much of his skin peels off his body that she has to clean the floor of his room at least 3 times a day.  He underwent full myloblative bmt- the preconditioning treatment that Connor will have to endure if or when  he has to do this again.  How do we make this choice and when?  We are still seeking guidance on all of this and trying to review all of our bmt research again but for now we still need to find another donor!  Please encourage everyone to register- most of them will never be called to donate and a lucky few may have the opportunity to save a life!

Connor is still doing well, we are keeping occupied by re-decorating his room and making it everything Star Wars! And he finally got a big boy desk and takes so much pride in keeping it organized and lining things up. I actually got him to let go of a few of his toys from when he was 2 or 3 so I am thrilled!    We are slowly getting into some sort of schedule but some days he is just really tired. 

Thank you all for your prayers for our family and for Andrew's family.  God has heard your prayers and our friend Nancy is out of intensive care, she still has a long road ahead of her but she is off of most of her machines and we are so grateful!

Have a great weekend!

Monday, July 2, 2012

July 2-

The past few days have been another difficult one. The clouds that have been hanging over us continues.  It is with a broken heart that I write that our friend, Andrew, has passed and went to be with the Lord on Saturday.  I am grief-stricken for his family but am finally at peace with the knowledge that God has greater plans than I will ever be phantom and am happy that Andrew is no longer in pain and suffering.  He is a true inspiration and his sweet smile will be missed. 

We had our weekly appointment today and it was so strange to walk the halls of Luries knowing that the Park family was not there.  Although we didn't see them often it was a great comfort to know that Joe was there and if really need, he would be a floor or two below us to offer us a strong hug and prayers.  We slowly spoke to Connor a week in advance that Andrew was getting worse but that he was fighting and we spoke to him about heaven.  We broke the news that Andrew did not make it and Connor's first concern was is Andrew's dad crying? We answered a few questions and then he went on to what he was doing.  He talks about Andrew's passing every day usually to ask one or two questions so I know that he is slowly trying to process it in his own way.  However, it was heartbreaking at the hospital today because as soon as we got to the elevator he asked if Andrew was still here.  And then he asked if Mr. Joe was at the hospital still. As I answered him, his face fell and he quietly asked "so, we'll never see Andrew again?" Too much for a child to comprehend.  And then he recollected how Andrew played video games with him at the Kohl's house and how that was the last time he saw him. Andrew made quite an impression on Connor- Andrew was in a lot of pain (ended up in the E.R. an hour later) but he took the time to play video games with Connor and he made Connor feel normal and happy to have that moment with this big teenager that he called his friend who was so brave and courageous.   Right now, Connor pictures Andrew up in heaven eating cheetos, gum and candy :) and he wanted to know if Andrew may have found a REAL Ben 10 watch in heaven.   I know that Connor will have deeper tougher questions for me later and those will be difficult to answer but I know that Andrew is at peace and I can give Connor that comfort. 

We stopped G-CSF on Saturday and within that 1 days time his count have dropped dramatically- it is quite worrisom and I just pray that we didn't do too much damage to his already weak immune system.  He continues to need blood and platelets and we are almost at the half way point and his immune system should be coming back up on its own. The doctors did another chimerism test to see if any donor cells exist- this may be our last one if they show the same results as last time. 

Please say a special prayer for the Park family as they grieve the loss of their precious son. They have given us so much encouragement the past few months and we wish that there was just something that we could do for them during this time. 

Please pray for Connor's immune system to jump start and start producing something and continue producing it independently. He is still at very high risk for all infections and although we are home, he has not been able to play with any of his friends.

Finally, please lift up our friend Nancy as she is in ICU with complications from a heart attack that she suffered 2 weeks ago.  She is a very important person in our lives and especially Connor's life, she was one of a few people he would facetime with while he was undergoing his treatment. 

Have a very safe independence day weekend and enjoy the time spent with your children.



Thursday, June 28, 2012

June 29

Hello All-
I hope you had a wonderful week.  We have really enjoyed being at home and Connor has been very happy to be home.  He commented that he would endure the pain of the mucositis in his intestines as long as he was home - didn't realize how homesick he was :(  We have been to the hospital twice this week, for blood, platelets, IVIG and patamadine-they were both very long days.  What is amazing is that his energy level was so high that you would never know that his hemoglobin and platelets were low. It truly is amazing how resilient children are- they just don't know that they are sick.  I am finally happy to report some good news- with the help of G-CSF, his counts are slowly coming back up.  His neutrophils are higher than before we went into transplant and his white blood cells have doubled.  We are hoping that they will continue to stay up and continue producing cells when we stop the G-CSF in 2 days. 

Please continue to lift Andrew and his family up in prayers. The doctors have informed the family that his lungs are not improved and all they can do at this time is to keep Andrew comfortable.  They were also told to gather the family and prepare to say your "goodbyes".  It is every parents worst nightmare and two very genuinely nice people have to live it.  Please pray for peace, comfort and guidance as they make this heart wrenching decision. 

Have a wonderful weekend.

Many Thanks -
Stephanie



.

Friday, June 22, 2012

June 22, Day +36 -No Miracles

Hi Everyone,
Unfortunately, I have more bad news to share. I feel terrible that all of you have had to ride this emotional roller coaster with us and that it has been so stressful. I wish that I had some good news to share but the dark cloud keeps following us around (similar to pigpen and the dust storm). 

Please read Andrew's blog (andrewsfightonestepatatime.blogspot.com) he is in a very critical state and we need an army of people praying for him day and night.  As you all know, I was in a state of shock and depression from Connor's failed BMT and was just angry and bitter and despite all the kind notes and stories of encouragement, I remained in this funk.  The ONE thing that got me out of it was Joe's blog detailing how Andrew squeezed his hand and showed that he was still fighting. The knowledget that this strong, amazing boy and his courage to fight and encourage others in the midst of all the pain that he was enduring was enough to get me out of my mental state.  I knew that I must get moving and stay strong and continue fighting for Connor and our entire family's mental and spiritual state.  I thought that as long as God brings Andrew out of this ordeal with a successful transplant, then it will not all be for naught, that it was all worthwhile.   So for these reasons, I really need Andrew to pull through.  I need him to talk to Connor about his journey and encourage Connor when he has to go through a second transplant or when he gets cancer.  Andrew is an inspiration to me and to so many others and I just can't accept any other plan.  I just will never understand a God that will cure his cancer, cure his chromosomal defect, find a bone marrow match within a week and then to take him away?  And to have the nicest people, Joe and Jennifer have to make this agonizing decision- just not fair?  So, I BEG, please continue to pray for a miracle for Andrew.

As for Connor, we are at home and he is really happy and eating well.  His counts are going down and our second chimerism test showed the same result as before, less than 2% donor cells (this is the lowest that the test results show, there is no 0%) .  The doctors started GCSF again, to help his immune system to grow back faster, they have given up any chance of the donor cells engrafting and we are now just waiting for his cells to grow back- it could take as long as 3-12 months.  I am praying that his immune system will come back as strong as it was before transplant and that we didn't cause too much damage with the 10 days of chemo.  We still haven't had the heart to tell him the news and are seeking wisdom for how and when to tell him and a little part of me was still hoping for better news.   

 Connor will need another bone marrow transplant sooner or later.  We hope to find a perfect match so that we can proceed with a bone marrow transplant before he gets sick. He was doing well with the IVIG infusions, but these infusions will not be effective forever, as with any drug, your body will become immune to it and therefore a bone marrow transplant will be necessary and it is his only chance for a cure.  Otherwise, if we can't find a perfect match, he will probably get some sort of cancer in his GI tract, a very painful cancer, and we will be in a desperate position to undergo full chemo therapy and then bone marrow transplant.  He is now 7 1/2 years old, the median age of survival is 25 years old. We don't have much time. It took us 4+ years to find this donor, so I am making another HUGE REQUEST.

Please help us run more bone marrow drives!  Please ask your churches, fraternities, soroities, other Asian groups to host a drive.  We just need a venue, a date and time and  we can help find someone to coordinate the entire drive for you.   There are many others searching for a donor now! Please help spread the word so that my son may have a chance to live a long and fruitful life. He has a big heart, a generous spirit and has so much to give back to the world, if only given a chance. 

I am unable to respond to all of your comments directly so IF you are interested in hosting a drive, please email me directly at stephmgk@gmail.com and I can put you in touch with the organization or coordinator who help with the drives. 

THANK YOU ALL for going on this journey with us.  Thank you for all the words of encouragement and support, it has helped us more than you could know.  We go back next Tues for more labs and will hope to finally have some good news for everyone.

Enjoy the weekend!
Stephanie

Wednesday, June 20, 2012

June 20 Day +34

Sorry it has been a while since I last posted.  It has been a very emotionally draining week but we are finally coming out of the storm.  We were allowed to come home on Monday, the doctors took pity on us and our misery and let us come home.  We were greeted by all of our wonderful neighbors and Connor was so excited but overwhelmed.  It is so nice to be home.  Connor is thriving here, he is able to run and play and his appetite has increased now that I am able to cook him some real food.  There is no gameplan but to wait and see.    We are back at the hospital tomorrow for more labwork and platelets and possible bone marrow biopsy to see if there is any donor cells left in his marrow. 

There is still a very miniscule chance of a miracle- that there are still some donor cells left in his marrow that may flourish.  (The doctors don't expect this to happen and we will find out more after the bone marrow biospy tomorrow).

Please pray for a miracle!
Also if there is no miracle, please pray that his old immune system will come back in full force.  Since stopping the GCSF, his counts have all dropped by half.  We really shouldn't be home but I guess we looked miserable :(

Please pray for no infections

Lastly, let God reveal our next steps for us. We are at a complete loss. 

Thank you!

Thursday, June 14, 2012

June 13th- Game Plan

We are living out our very worst nightmare where all of our efforts are all for nothing. Instead, our sweet baby had to endure 10 days of chemotherapy followed by 27 days of horrible tasting medicines, unspeakable pain, mouth sores, hemerroids, and terrible homesickness for what? I am still in SHOCK and just really don't understand how this happens? We have researched BMTs for 4 years now and according to the doctors here they have only had 1 bmt failure in 3 years and they tweaked the chemo formula and have not had failure since then??? And on national average, the chances of failure is around 5%? It seems like nothing has worked in our favor for the past several years and now we will always have this dark cloud hanging over our heads until who knows when? I just have a lot of bitterness and grief and worry - the 'normal' life that we were looking forward to is not to be. It breaks my heart to have to tell Connor that this did not work - how does a 7 year old who has summoned all the courage and bravery that he has to take his meds, to follow doctors orders process that it didn't work? I just don't know how he will handle this news and I don't even know when to or how to break it to him. I just feel terrible that we exposed him to more risk of secondary cancers, that his own immune system may now be more compromised than before, and who knows what it did to his mental, emotional and spiritual state? We are not even back to square one, it feels as if we have taken a major step backwards and our options are more limited. The tears just flow randomly and I can honestly say that I have never been this down in my entire life. AND how do we make a decision to have another BMT? and if so where? it is just too much... Well, we met with the doctors this evening and they had no explanation as to why his did not engraft, they just said that it happens sometimes. SO we asked if he could get a boost from the donor but they said that this is not an option, the chances of it helping is very low and there are risks b/c he will need more chemo. There is nothing left for us to do but wait for his own cells to grow back and build up enough of an immune system for him to be able to go home. Our only consolation is that his immune system seems to be coming back whereas in some cases the body's immune system does not come back and they are left with no choice but to get another bone marrow transplant. They are stopping all the immunosuppressant drugs (to prevent GVHD) and our one hope for a miracle is that there may still be a very small percentage of donor cells in his bone marrow and that they may be able to grow a little bit, they told us not to expect this to happen. They are also stopping the GCSF so we will see how much his counts go down and they will go down. We are not sure when we will be able to get home - we are just stuck here waiting and knowing that this has failed, it really is so hard to be patient and to endure all of this. Connor is in good spirits and he is off of all pain meds. He is in a very good mood and coming back to his old self and taking the meds has become a little easier for him as well. I know that so many of you have been anxious all day so I wanted to share the same info that we received today. A friend told me that in times like these, we can turn away from God due to all the troubles or we can choose God. In the past week, I have really really tried hard to choose God. I know that there is a divine plan that we are not aware of and I also know how fortunate we are despite all of this but at this moment I am just really angry, bitter, sad and confused and it really is so difficult to choose God. Please continue all efforts to register more asians to the bone marrow registry. Besides a miracle in the next month or so, Connor will most likely need another bone marrow transplant if we can find a perfect match sooner rather than later. The median age of survival for his disease is 25 years old, the clock is ticking and because of this bmt failure, it is more critical than ever to find a perfect match. Good night.

Wednesday, June 13, 2012

@Kylene

HI Kylene - Can you please email me at stephmgk@gmail.com- I have a ton of questions for you and would love to read your blog or caringbridge account. Thank you for taking the time to comment - it give us a sliver of hope.

June 13 Day +27 - Chimerism Test Results

We received the worst possible news - the cells growing back are all Connor's cells NONE are from the donor!  The Bone Marrow Transplant did not work! I am in Shock and don't understand WHY God would allow this to happen to him?  Why give us this match?  Why put him through 35+ days of Hell?  The BMT Team is meeting this afternoon to come up with a new game plan -but we are now facing our worst fears and don't know how we will come out of this.  IT ALL SUCKS!

Monday, June 11, 2012

June 11th, Day +25 Chimerism Testing

The doctors sent his bloodwork for Chimerism testing today.  This test is performed to see how much of this blood cells are Connor's and how much are donor's cells growing back.  We won't know the results until tomorrow late afternoon but PLEASE PRAY that there is a large percentage of donor cells growing back. If so, they will continue administering the GCSF, if not, I am not sure what we will do at that point...I can't even go there.  We will be biting our nails and praying for good results, please send special prayers for this test.

June 10, +24 - A little bit of Hope

As you all know, we are anxiously watching Connor's lab results every day.  The numbers were not going up as expected so we are very concerned but all the doctors have told us to not panic until Day 30.  We were trying our best to remain calm but it was difficult to hear the doctors tell us that they will start administering GCSF (Neupogen) shots last night.  I know that Connor is in great hands and that the doctors have many years of experience with this but I was hoping to avoid as many chemicals and blood products as possible (I know kinda crazy hope especially since we have been pumping him with chemo for 10 days but you know, a mother's hope).  GCSF helps stimulate the neutrophil numbers to grow and therefore these neutrophils increased numbers will help heal whatever is going on in Connor's GI tract and rectum.  The only concern is that it may promote the growth of his own neutrophils and not the donor's neutrophils.  SO - GCSF was administered at 8:30 pm on June 9th, his lab results from the morning showed an neutrophils of 109,  by 4 am when labs were drawn, his numbers went up to 264 - we are ecstatic with this number and just pray that it is the donor's cells coming in!

Unfortunately, while I was out shopping with my cousin for some "necessities" Connor had a terrible bowel movement and there was a puddle of blood at the end.  Steve took a picture to show the docs but I will spare you from that sight:)  We were told that this may happen, but you expect a little blood not where it turns the entire bowl bright red, it is quite shocking to see.  Connor wouldn't let anyone else wipe his tush so I had to rush home and felt sooo terrible and was so nervous  to see all that blood and expected to hear his screams of agony from the hallway but he was just on the toilet moaning a little and playing his DS - What a FIGHTER!  Anyways, due to the amount of blood loss, they ran labs again at 5:30 and his counts went up again to 400+!!!  Steve and I are high fiving each other now and we felt a huge burden fall off of our shoulders.  I don't know if it was going out today and being part of society and doing what i do best (shopping) or his counts coming up but I feel like I can breathe again and there is a light at the end of the tunnel.  Thank you Lord!

Well, we are far from out of the woods.  We are told to expect more bloody bowel movements (a sight that will always frighten me), his numbers may go down again and his pain may get worse before it gets better.  When his neutrophil number stays above 500 for 3 days they can take him off of GCFS and then we will have to wait and see if numbers fall drastically or if his body is making them on his own.  There is still a lot to be nervous about and we are no longer as naive to the process anymore and realize that the road ahead may get worse but for now we are just enjoying the increase in numbers and hoping and praying for the best outcome and complete engraftment!

Thank you all for your concern and support! I hope you all had a wonderful weekend.

Saturday, June 9, 2012

June 9 +23 -The big Move

It is getting harder to write the Day + as the days get larger and we are still not seeing engraftment.  His ANC is at 109 so similar to yesterday but his monocyt numbers which were so encouraging yesterday went down drastically today.  The doctors have told us that we shouldn't worry at this time but that they are also a little bit concerned. I asked when should we start freaking out and he told us by day +30.  That is only 7 days away and his body has to do so much in that time frame so needless to say Steve and I are very anxious. 

We moved to the new hospital early this morning.  We were the 2nd ambulance to arrive but the first ones to make it inside the hospital and to this floor.  The Child Life specialists are going to make him an award or something to give Connor to make his stay extra special.  He always wanted a perfect attendance award so he is going to love this!  The Lurie hospital is AMAZING.  The chapel has the most beautiful stained glass windows, there is a fire truck in the hospital and the elevators have interactive buttons and just very spacious and nice. It'll be nice to come back and explore for our annual check ups. 


Well, we are all settled in, it took a while for him to take a nap but he is finally sleeping so it means another long night since he will wake at 11pm to take his meds and then play.

Thursday, June 7, 2012

June 7, Day +21

I wish I had good news to share but unfortunately this continues to be another rough week. The only bright spot to this day is that Connor has stayed fever free for the past 24 hours and all of his cultures are turning out negative for infection. The bad news is that he is still in a great amount of pain, he is hooked up to a PCA machine that continuously delivers DILANTIN (a pain medicine) and then he has a button that he can press for a boost every 8 minutes. They have had to increase the dosage three times since yesterday. He had a CT scan performed yesterday and he was such a trooper drinking cups and cups of apple juice and laying still for the scan and luckily it didn't show any fissures or abcess but some inflamation on the lower rectum. We think that this inflamation is also causing some problems with his urge to urine and he is having a hard time and has symptoms similar to a UTI. He is trying to make the best of it still but he was screaming out in pain for an hour today and it is very difficult to watch him go thru this. We hope that this will pass soon. We have moved out of the Kohls house and now situated at the Ronald Mcdonald house in Lincoln Park, we were able to get a room with our own bathroom, this is especially important now that Connor has all of these bladder/bowel issues. It also looks like we will not be discharged by tomorrow and we will be one of the patients that will be transported from the old hospital to the new hospital on Sat, it will be Connor's first and hopefully last ride in an ambulance. His ANC numbers are going up but not significant enough to say that it is engrafting, the doctors refer to it all going in the right direction and that all of this is expected. We are still really hoping that he will engraft soon- it will give us some peace of mind. Thank you all!

Tuesday, June 5, 2012

June 5, Day +19

Sorry I haven't been posting, the last few days have been difficult and blurry. Unfortunately, we don't have any good news to report...we are getting admitted today due to a fever. He received more platelets on Monday but despite all the transfusions, his platelet counts are still very low and his little body is bruised all over. He is in so much pain that my normal cuddly son does not want to be touched, not even on his feet. He has also been suffering from a combination of a hemerroid along with an internal tear or abcess, the pain from the bottom is excruciating for him, he cannot walk and we spent the past 2 days laying down watching netflix and a little light reading. His energy level is very low, doesn't have an appetite and he is overall feeling very crummy. He just received his first dose of morphine for the pain and is now sleeping. There isn't really any sign of engraftment yet, all of his counts are just really low. We were really hoping for some sort of upward movement in his counts. The good news is that because his counts are so low, the tear or abcess doesn't have anything to grow on, so we are lucky in that regard because it could have been worse and turned into a really bad infection. Right now, it seems as though we are one step ahead of the storm-but then again he does have this lingering fever... The nurse just came in and now gave him some FLAGYL, an antibiotic for any sign of infection in his gut. He will need to have another blood transfusion and some other kind of broad spectrum antibiotic. I wish that we had been giving him colace the entire time that we were here, it may have possibly prevented all of this pain for him. Our friend Andrew is still in I.C.U. The doctors have told them that the next few days are critical for his survival. He is sedated now since he is intubated and still fighting his pneumonia. He has some signs of VOD, where the tiny blood vessels around his liver are not working, and is awaiting approval from insurance to receive a trial drug that may help with this issue. PLEASE pray for Andrew and his family-I can't even begin to imagine the anguish that they are going through-it must be sheer torture. Connor asks about Andrew daily and is so worried about him and feels terrible that he has been stuck in the hospital for so long. Sorry we don't have better news to share. We hope that things will turn around soon and are hopeful that it will soon. It is very difficult to stay optomistic and positive and patient when your child is suffering. And to make matters worse, the Kohl's house is closing on Friday so sometime this week we have to find time to pack (and we now have double the stuff that we came with due to all of your generous gifts) and move to the Ronald Mcdonald house in Lincoln Park where we will stay for 2 weeks and then we have to move again to the new Ronald Mcdonals house near the new hopsital. All of these moves are going to be difficult b/c Connor does not like change and he just got used to the Kohls house. Looking back, we were so naive- we thought that we would be able to go home after Friday and just go back and forth but it looks like our bumpy patch is just beginning and we may be here a lot longer.

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