@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.

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.

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!

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!