Happy 8th Birthday!

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. 

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. 

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". 

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!

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!

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.

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



.

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

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!

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.