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



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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.

@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!

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.

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.

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!

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.