Wednesday, January 14, 2004 TRANSPLANT Date Set!!! 1st meeting with the nurse coordinator, to review entire calendar from here on. Aaron will recieve his transplant on Saturday, January 31. The way the schedule will work is we are now counting down toward that date, that would make today -17 day. At -10, next Wednesday January 21, Aaron will be hospitalized inpatient and his Hickman line will be surgically placed into his chest, at the same time they will do another spinal punture and bronchoscopy (a biopsy of his bronci).   Then he will be transported to the childrens BMT center, where we can plan on staying through about day  +38 (around the beginning of March). He could be moved to the Ronald McDonald house sooner if things go ok or later if they don't.   Then we were off to Opthamology department, where they tested Aaron's vision. (2 hours of waiting!) Aaron's eye's are fine no visual problems at this time. Then we had a consultation with the eye doctor about how ALD can effect his vision, we pray that it doesn't.   Thursday January 15, 2004 Today we sat in one room at the BMT center and everyone came to see us there. We didn't have to travel all over the hospital campus.   We met again with Dr. Grewal one of the BMT doctor's and he spent at least an hour again going over each detail of the transplant procedure and risks. Many things I will not post here.  He said Aaron is a good candidate but ironically enough the best ALD patient is a younger boy sibling who has an older brother with the desease and the younger sibling having shown no symptoms what so ever but has ALD.   We then had three more appointments but as I said they all came to see us today.   A Word about Mom and Dad If you are wondering how we are doing, we are basically going to one appointment to the next. This team of people have educated us so much during this first week. There work is very impressive.  It's helped a lot that we have so much experience with steroid use, a concept they have a hard time teaching people about.   We are very tired, this seams like a bad dream, but we are doing everything we can to be strong now when Aaron needs us to be more than ever. We are very proud of how he is handling everything. He say's this is his mission and losing to him is not an option. I think we feel so far away from home.  It's also hard to believe that within 2 weeks Aaron will be on at least 8 seperate medications daily, he will be losing his hair and very sick at that time. We can't help but be scared of what damage the ALD can do.  We love and miss you all.   NOTE: I am writing this, at times, late at night I am sorry for any typo's I just don't have enough time to proof read everthing.   Friday January, 16 Firday, Florence was not feeling to well so we left her at the Ronald McDonald House, we only had 2 appointments at the hospital. First was with our case social worker. She is concered about Flo's medical needs and what would happen if we had a crisis with her. So they are going to set up some Dr.s appointments for for Flo so at least then the hospital has some history on her and would know what her wishes are.   Then Aaron & I headed over for a field vision test our appointment was at 12:30 pm we left at 3pm very frusrated.   Saturday January, 17 Nice day off. I went out and did a little shopping. Aaron & I took a walk along the Mississippi river ridge it was about 33 degrees here, rather balmy for this time of year.   Sunday, January 18 Today was ssoo cold we couldn't go out at all. But 2 wonderful groups of people from two organizations here provided us with a wonderful brunch & dinner! What we would do without these wonderful people I don't know. Also Flo and I find it interesting that the cars in the parking lot here are from all over America we see Florida, Washington, North Dakota, Washington, Louissiana, South Dakota, Michigan and more.   This Ronald McDonald house is filled with love and compassion, we are blessed to be able to stay here.   Monday January 19, 2004 An appointment we had with our social worker pertaining to Flo's was postponed, until we are in the hospital after Wednesday. Other than that Aaron,s has a new love "pool" as in que, he loves playing pool, it really helps take up some of this waiting time. He's good too, if a ball is in his way he just moves it so he can make his shoot.   Tuesday January, 20 2004 Implant postponed! With less than 16 hours on the clock before Aaron went into surgery to have his shunt put in, we received a call from his BMT coordinator.  Our insurance company, even though they were telling Florence & I we had no problems all was a go.  They put our case on hold today! for further review, they didn't believe the transplant was neccesary. In other words until we hear from them again, Aaron can not begin his life saving transplant program. Time is all too important right now and every minute we are wasting time, time that Aaron does not have. We are left without words to describe our saddness.   Thursday, January 22, 2004 Greetings...An item I failed to mention before was a surprise visit from one of our Chicago neighbors on Tuesday...Patti our friend from the house on the corner, yes Harvey's owner, works in publishing and has to make a trip up here to Minnesota every 2 weeks. She also does work for the Norwood Park School library. Patti had arrived just as we got the news from the Hospital about our insurance company. She was able to spend quite a bit of time playing pool with Aaron while we wept out of site in our room. But the big news about this visit was all the books she brought for Aaron. Included were like 10 joke books, so all day yesterday Aaron read everyone, it was like having Johnny Carson stay with us for the day! What a joy that brought us while we sit here and wait for news.  We just now 12:53pm Thursday received a call from the Illinois Department of Insurance they are calling the insurance company now on Aaron's behalf. We expect they may prod them along to see things our way.   Aaron is also very excited today  because he is going to have a special virtual phone visit with his classroom at 2:15, he is counting the minutes and hoping around on one leg. He misses his class so much, his teacher Mrs. Stephan tell us he is missed by his class very much as well. Well its time to upload some pictures I took today. We will post news on transplant re-schedule as soon as possible.   Friday January 23, 2003 Transplant Scheduled Again! This news just in, and it couldn't be better.  Aaron's has been rescheduled for his transplant, his Hickman shunt surgery is on for Monday, If all goes well Aaron's transplant date should be February 5th.   I can't go into all the details of how this was resolved, but let me just say I work for a great company Pioneer Press and in our very hour of need, they came through and are acting on Aaron's behalf to help us through this. All of our and your prayers have been answered. I can not begin to tell you how eternally greatful we are to the top man at our newspaper company Larry Green he was very instrumental in the effort to make Aaron's transplant proceed. Now we find ourselves with gratitude that words do not do justice. Thank you and God Bless you all.   Sunday, January 25, 6:15pm Well, here we are at the 11th hour again.  But this time we are going forward toward the transplant. Tonight Aaron will shower and then I have a special antibacterial lotion that I will put on him from his neck down to his tummy. I will do this again at 4:30 Monday morning.  I understand this lotion kills all those little things that live on our skin. This is to prepare his skin for the cathader implant and he will also undergo a broncoscopy and a spinal puncture, surgery begins at 7:30a.m. Monday morning we check in at 5:30. The surgical procedure has risks of it's own.  Florence nor I could stomach much dinner tonight. Bedtime is 7:00pm.  After all of the ecitement from Friday passed we and Aaron face the biggest challenge of his young life. He gave us a speech yesterday, made us sit down as he stood on the couch were he spoke to us as you would in a small presentation. He said "I want you both to know I am not afraid, or scared of whats to come, I only hope that my experience over the last 2 weeks does not happen to any other children, the end" and that was that. I will say we miss you and ask that you keep us in your prayers.   Monday, January 26, 2004  Day -10 Aaron went into surgery laughing having a great time! 3 hours later he was no longer feeling very good. Infact he slept until about 7pm last night. The 3 hours procedure went well, his Hicknam Cath. was placed with no problems, the spinal punture and broncoscopy went well too. The brocoscopy caused us the most pain because Aaron woke up he had a very sore throat, at times he was crting it hurt so bad. We sent Florence back to the Ronald McDonald house, we agreed I would take the first night, and I am glad I did. As I said Aaron woke up at about 7pm last night. He was sick to his stomach several times, along with this throat problems, the sickness was from the anastisia used during the surgery.   Tuesday, January 27, 2004   Day -9 So Aaron and I met this day awake at midnight. Aaron continued to be sick and the sore throat right through until about 5:30 this morning. They started his chemo early about 4 a.m. and with it came an anti-nausia drug which I welcomed. So Aaron and I were up all night long. It was a long night (more of these sleepless nights soon). We decorated his room with photo's and pictures of our dog corky. A classmate gave him the 'planets' in window clings so the nine planets are in order accross his window. Aaron could not move around very easily because of the amount of IV machinery he is attached to, we have to help him move around. Florence was back about 8:30am what a relief. Then this morning everyone came into see how he was doing.  I actually got a little rest in Aarons room on a cot for about an hour & a half.  Then It was my turn to leave and comback here to the Ronald McDonald house, it's 7:45 now, and I am going to go and get some much needed sleep.   Wednesday, January 28, 2004 We started the day out laughing playing Madlibs. When they changed Aarons dressing on his cathiter I snapped the picture of him laughing when only seconds before he was really feeling the pain of the new addition to his chest. Our fun ended pretty quickly as we all experienced a whirlwind of doctors, nurses, teachers, preachers, aides, therapist and more. At one point I remember seeing Aaron on a portable excer-cycle riding as far as he could in 10 minutes! Everytime he gets up we have to help him gather all the tubes that are giving him the chemo so needed in destroying his immune system along with a variety of other meds. The great news today was    1). They brought me a computer to use in his room...yea! I don't have to leave his side to write these updates   2). Aaron's story is being featured in all 56 Pioneer Press newspapers covering over 100 cities around the Chicagoland Area! It was published in the West Suburban newspapers today! and the balance on thursday. Thank God, they are helping so much in sharing our struggle with thousands of faithful subscribers. I understand he may be on the cover of our local newspaper at home the Edison-Norwood Park Review. Thank God for everyones support, it means everything to us in getting through these days.   What a special day this has been. I am spending the night here with Aaron while Florence who should be resting is busy doing laundry over at the Ronald McDonald house along with 20 other chores, she is very thankful for pain meds which are helping her through all of this.   OK well I better upload this now, oh, one more thing it's like 100 degrees below zero up here. We were laughing at all of the groaning the van is doing as we warm her up for the trips back and forth.   Saturday  January 31, 2004   -5 Day It has been so cold I understand the night before last it was colder here than in Alaska and Siberia. -25 degrees below zero without the wind chill.   Aaron has been on one chemo drug since early in the week. Today was the first day of a new chemo called Cytoxin this is the drug that will kill his immune system in preparations for the new stem cells. todays dose went in without a hitch. Some children I am told handle cytoxin better than others, it certainly can make someone very sick too. So we just wait.   The past 2 days have been very hectic as we adjust to the rigerous schedule during the week. So today (Saturday) it's not so busy.   We are having a special "services like" gathering here with our Pastor Dave Jones from Chicago & the chaplan service here. It's just in recognition of the new life saving stem cells Aaron will be receiving. It is a very big deal to us. We will pray that the new cells do their job and not begin a potentially deadly fight with Aarons current cells. Aaron has had a couple of sad moments in recent days but is generally happy ans he still wants to play Madlibs.   It's balmy here today 4 degrees sure feels better that warming up your car when its 25 below outside.    Sunday, February 1, 2004   -4 Well I spoke too soon after I returned to the Ronald McDonald house Aaron became sick to his stomach from the chemo, Flo up almost all night. They gave Aaron a prescription to stop bing sick. Bad choice he had a terrible reaction to the medicine it took Florence and a nurse hours to get him back to normal.  He isn't eating much today. He is laughing less now since the Cytoxin started.   Tuesday, February 3, 2004 Aaron has had another reaction to a medication. He will be OK they are changing that medication out for another. He's is here next to me, half awake & half asleep. He is covered with red hives. They have given him benedryl to try to counteract the reaction.  I was up most of Sunday night with Aaron who continued to be sick. Last night Flo stayed on overnight and she had to deal with this most recent reaction and he was sick to his stomach several times overnight. Tonight I do not plan on getting much sleep the cytoxin they are giving him is so strong that they do not want it to stay in the bladder so each of these nights we have been watching the amount of fluids he is expelling. If it is not enought they give Aaron a special medicine that makes him go. We do this every other hour overnight and all day long. Tonight will be our 5th night.  He is no longer eating anything, but he is getting everything he needs throught his IV.   Thursday, February 5, 2004 Aaron's Transplant Day Aaron had a very feverish day. It would go up, then they would give him benedryl and it would come down. At 4pm they decided 102.4 was a little high. The transplant was here in the unit. They partially stripped Aaron added some ice bags and lowered his temp to 101. The transplant arrived with the staff holding ballons a gift for Aaron. He was asleep the entire time. The transplant was connected to Aaron's IV it drained in record time. A nurse commented that it went in faster than any other transplant she has done. So even if Aaron was asleep he still did the job as fast as he could!! 9 minutes was a new record. Pastor Dave delivered a blessing service during this time which was so appropriate. On the cover of the service guide were these words "We choose to go to the moon in this decade and do other hard things, not because they are easy but because they are hard" John F. Kennedy, (September 12, 1962) also on the cover was a photo of the shuttle orbiting the Earth. All went well and we are so thankful that our Pastor David Jones came all the way up from Chicago to share this day with us. I will try to write more a.s.a.p.   Sunday, February 8, 2004  Day +3 It's 2:30pm  Aaron fell asleep again (2nd time for a nap today) Flo is able to nap now too while I am here. The last 72 hours Flo & I have been trying to keep up with Aaron's biological system. We go from him feeling somewhat OK to feeling sick to fever to upset stomach ending with a dose of Tylenol then the fever comes down and Aaron feels OK until it begins all over again. I was up about 7-8 times overnight. We (Flo & I) are tired even as we hand off the duties each night to one another, we are exhausted. I will go to the Ronald McDonald house tonight and sleep through the night. The good news, all of Aaron's test are OK for now, we are only having this fever trouble and thats something we must keep an eye on. A couple of notes: It's nice to hear the crow's all around this area, at home they are gone from West Nile Virus.  But the jets flying low overhead at times makes us think of our home in Norwood Park and how much we miss being there.  With each day that passes we pray we are 1 day closer to home. Today is day 3 after transplant. We are told to expect more trouble from the chemo between days 7-21, and so we wait and pray that God makes Aarons recovery a smooth one, without  serious complications. Tuesday, February 10, 2004 The scariest day of our lives! This morning after visiting with his occupational therapist (around 10:15 am), Aaron began exibiting strange signs.  He said that "my brain is playing tricks on me", and then he went away.  He could no longer speak.  He was semi-responsive to the doctors and nurses and could hear what we were saying, but could not answer.  Then came the drooling and a serious seizure, this time on the right side.  He spent the morning staring blankly at the wall unable to respond to anything.   Drugs were immediately administered to try to get it under control, and an EEG was performed at 11:30.  This showed continued seizure activity for over an hour, so they needed to get an MRI to rule out medication reactions and blood vessel ruptures.  By this time ( 2:00pm ish) he was beginning to verbalize again, but all was incoherent; he was extremely agitated,  frustated, and angry.  He was sedated for the MRI which could not detect a CSA overdose, but did rule out ruptures and other brain damage.  By 5:30, he was back in his room completely sedated and semi-conscious, sometimes babbling in tongues, so his speech was coming back.  Around 9:00 pm, his speech returned, along with his awareness of his surroundings.  He was still somewhat confused and still frustrated because he could not get his brain to say what he wanted to verbalize.  None of us slept the night; Aaron's poor little brain was still on overload and would not let him rest, so consequently, we had to care for him round the clock.  At midnight, he was now talking better (ALOT), and the nurses finally gave him some Benedryl, but not until 4:00 am, and he was able to rest but only for about 2 hours.  This morning, Wednesday the 11th, he is walking and talking better and seems to be responding well to new medications to prevent seizures.  Unfortunately, they will have to re-start the CSA and cannot predict what may happen, but hopefully, they now have his medication levels adjusted appropriately, so no more seizing will happen again - WE PRAY.   Wednesday, February 11, 2004 Visit by Dr. Lockman, Neurologist, quote: " We are not out off the woods yet"   Thursday, February 12, 2004   Day +7 As our day progressed yesterday Aaron slowly regained the use of his brain, we only had about a 1-hour period of time that he seemed to be having a slight seizure. It only effected his memory, he would ask the same  question over and over and not be able to remember the answer. Aaron slept well overnight! we were only up a few times. The sleep is what Aaron really needed, over the past 72 hours none of us rested very well. Today Aaron's spirits are up, I will say he feel's better, not great but certainly better than Tuesday & Wednesday. Your thoughts & prayers helped us through the worst of it and we are greatful to you for that. We are still waiting for the results of yesterdays EEG follow-up to make sure there is no longer any siezure activity in his brain.