Saturday, August 31, 2002 at 05:05 PM (CDT)

Hello everyone

Just wanted to thank everyone for all the expert advice and wisdom with regards to Colby's comfort. You will be pleased to know that he is feeling better and his mediport site is less painful today. What a relief!!! Yesterday when I accessed the port, he was not very happy and it caused great discomfort because I had difficulty with-drawing blood. I think I cried as much as he did. Today it worked beautifully. He is at Uniontown hospital receiving a platelet transfusion. Thanks Babe for the help. I love you. Colby will most likely need PRBC and platelets again on Monday or Tuesday. Jack just called and said that Colby is being very ornery. That's my Colby.

Please continue to keep our JMML families in prayer and please add Connor(recent relapse JMML) to your prayer chains. www.caringbridge.org/ny/connors_page
Love to all
Laura

Thursday August 29, 2002)

Day + 168

Hello to all and thanks for checking in on Colby.

>>Monday was clinic day. It was nice to see everyone and especially Nurse Anne. Our visit went well and we were in and out. One new finding on his exam was that now he has a systolic murmur. We will watch it closely and follow up with an ECHO
if needed. Hemoglobin has been holding and actually rising with each result.. Platelets have been difficult to maintain. He
has required frequent transfusions. White count alarming also. Up to 25,000 with the latest result. As far as the broviac that came out last Friday--well it has been diagnosed as"broviac cellulitis" and it would have had to be removed anyway. Colby
knows his body very well. He has been such a brave little soldier. The venipuntures have been virtually painless, for now anyway. He has been troubled with"headaches and tired legs".
>>Tuesday his platelets dropped to 17,000 which required another transfusion. Jack has taken a load off by going with Colby to our local hospital to receive his transfusions. The lab and Pediatric unit have been very accommadating and we thank you. Sorry Babe, I know you were looking forward to a family night---hang in there---we will make it. Love ya babe!!!
>>Wednesday, Colby was scheduled for placement of a MEDIPORT catheter. It is under the skin and no tubes hanging around. The disadvantage is that it needs to be accessed with a needle through his skin each time. Colby was such a courageous little guy. He walked to the OR room holding hands with the staff. I barely got a good luck kiss. The surgery went well. He
did develop stridor post-op(sounds like croupy cough-- cause is most likely due to intubation during surgery) that lead to epinepherine aerosol and decadron 10mg (IV steriod). He woke up crying and was in a lot of pain. He required more pain medicine than he needed during his entire BMT. He is still hurting pretty bad. This morning he stated "I would rather be dead than to have this pain". WOW, I was in shock when I heard that and my heart flew up into my throat. Jack even questioned that comment. Colby really must be hurting. He turned down a trip to the playground today. My poor little buddy. Tylenol takes the edge off but he is still so very tender. I hate to even think about accessing his port tomorrow for labs. Emla cream to the rescue---what ever parent carries when they have a child with cancer. Dear God, please bring some comfort. It really hurts Jack to see Colby in pain...These children go through hell.
No signs of GVHD. Dr Bunin is away this week but I have been faxing lab result to her office. I am anxious to talk to her.

Thanks Aunt Lynda, Aunt Mar, Grandma, Happy, Marge, Virginia and everyone else who has been helping us with the boys. Many thanks to those who keep Colby and our family in prayer. Thank you GOD for blessing us with these wonderful people in our lives.

Goodnight to all
and God Bless

Laura

P.S. I will be adding pictures soon from our visit with the Doctor family. Love you guys. XOXOXOXOX
_______________________________________



Saturday August 24, 2002

Hello to all,

Another life saving attempt from Colby's PRECIOUS DONOR whom ever she may be, was administered through a 1 1/2cc syringe of diluted leukocytes on Wednesday August 21, 2002. I guess this could be another re-birthday. WOW how about that!!! Three birthdays in only eight months. The outcome we would like to see is GVHD(mild degree of course). This process may take 3-6 weeks or more. There is a possibility that he may have no response to the DLI. The theory is that GVHD has been known to cause Graft vs. Leukemia effect in some patients. At this time, we will wait for signs of GVHD over the next month. At one month he will have a BMA to determine amount of donor cells. GO CELLS GO-----find your way to the bone marrow. Just as a caterpiller builds his cacoon and grows and matures to emerge as a beautiful butterfly, we pray the donor cells will do the same and allow our son to grow and mature so that he too may become as free as a butterfly. Colby will continue to be seen at CHP Hem/onc clinic until he would need further treatment regarding GVHD. We sure do miss Nurse Anne. Thank you Dr Goyal and Tammy for all your continued support during these times of uncertainty.

After our day at CHOP, we followed the Gray family to Dana Doctor's house to enjoy the sounds of innoccent laughter among the children. There was a houseful. The children found immediate friendship. It is amazing to watch Zachary run around the house with such energy. I was extremely please to see the boys and Sami get along so well. I wasn't quite sure how they would respond because they are the same ages. Colby and Kyle are both 4yrs old and Cameron, Zachary and Sami are all 2yrs old. They had a blast throwing balls at the adults and spending some time outside on the swings. Colby really enjoyed when Dakota (the Doctor's dog) would come by for Colby to pet him. As the children enjoyed their new friendships, I was elated to spend some time with Dana and Sandy. It is funny how when you are with parents of cancer children, you can actually feel a sense of relief and comfort. The support is outstanding. Thursday we took the boys to the beach. It was windy and the sand kept blowing in everyones eyes but it was relaxing to hear the sound of the ocean waves. The boardwalk was a hugh hit with the kids. Our never-ending love to the Doctor family.

Friday, we had a visit from Jessica(Colby's couisin). She spent the day with the boys in the pool. Colby did accidently pulled his broviac catheter out from his chest. OUCH!!OUCH!! He was a little shaken up at first but then grinned and said "no more catheter". This event led him to a visit at the hospital lab for his blood work. He was so brave and such a little soldier. He didn't even yell when they did his arm stick. He continued to praise the fact that he didn't have a catheter anymore. His labs were:

-hemoglobin 10.8
-platelets 23000
-white count 9.0

With his platelets being so low he had to have a platelet transfusion today. After I got home from working night shift, we were off the Uniontown Hospital for his transfusion. I was certain that after he had to have a peripheral IV that he would change his mind about having his broviac. Well, I was shocked that he continued to be "STRONG LIKE BULL". He watched Nurse Donna carefully place an IV in his little hand and said "Oh mom, that was just a little pinch--she just held my hand tight and it didn't hurt". Thanks girls for being so good to us during our visits to the PEDS unit. You have made a world of difference. The transfusion went well and then we were back home to have some of Aunt Marlene's famous meatloaf and homemade cookies. Thanks Aunt Mar for all your help with the boys and for all the fabulous dinners. We love you.

We continue to thank you all for supporting and standing by us during these difficult times. We give GOD our highest gratitude for surrounding us with such caring people and for keeping us strong.

Love to all
Laura

Tuesday, August 20, 2002 at 01:14 AM (CDT)

Jack and Colby are at UTH receiving blood products and Cam man is with Gram and Happy at home. Thank you both for staying out so late(Jack won't be home until 3:00am). You guys are truely angels and we would be lost with out you. Bunches of Love to you both. You are ALWAYS there for us. Thank you honey for taking such good care of Colby during his transfusions. It was nice to just pop in and out and to know everything was alright.

Colby and Cameron spent the day playing with BJ. Thanks Grandma Mae for lunch(she was our cook at the daycare). The boys always tell me "That doesn't taste like Grandma Mae's". I don't think I will ever learn to be a good cook. We are spoiled by the fact that Jack's mom always brings us yummy dinners.

While Colby was receiving his transfusions he said he really didn't feel well. "I feel like I could vomit". He was sweating so much--the bed needed changed. I'm not sure what to make of it but we will keep a watchful eye.

We leave for Philly Tuesday afternoon. Many thanks to my co-workers for arranging their schedules to accommadate my time off. Our plan is to stay at the Ronald McDonald house Tuesday night and head over to CHOP Wednesday at 10:00am for Colby to receive his DLI(donor lymphocyte infusion). God bless the DONOR!!! I hope things went well with the procedure. You are always on my mind and in my heart..... Next, we plan to take the family to Dana and Stuart Doctor's home for the boys to meet. I am so looking forward to the get together. Thursday, Zachie has an appointment at CHOP and we hope to spend the rest of the day at the beach. YIPPIE>>>>the boys are really excited about the trip. I just hope they do well on the 5-6hr drive.

Thanks to all for your continued support and prayers.

Love to all
Laura

Tuesday, August 20, 2002 at 01:14 AM (CDT)

Jack and Colby are at UTH receiving blood products and Cam man is with Gram and Happy at home. Thank you both for staying out so late(Jack won't be home until 3:00am). You guys are truely angels and we would be lost with out you. Bunches of Love to you both. You are ALWAYS there for us. Thank you honey for taking such good care of Colby during his transfusions. It was nice to just pop in and out and to know everything was alright.

Colby and Cameron spent the day playing with BJ. Thanks Grandma Mae for lunch(she was our cook at the daycare). The boys always tell me "That doesn't taste like Grandma Mae's". I don't think I will ever learn to be a good cook. We are spoiled by the fact that Jack's mom always brings us yummy dinners.

While Colby was receiving his transfusions he said he really didn't feel well. "I feel like I could vomit". He was sweating so much--the bed needed changed. I'm not sure what to make of it but we will keep a watchful eye.

We leave for Philly Tuesday afternoon. Many thanks to my co-workers for arranging their schedules to accommadate my time off. Our plan is to stay at the Ronald McDonald house Tuesday night and head over to CHOP Wednesday at 10:00am for Colby to receive his DLI(donor lymphocyte infusion). God bless the DONOR!!! I hope things went well with the procedure. You are always on my mind and in my heart..... Next, we plan to take the family to Dana and Stuart Doctor's home for the boys to meet. I am so looking forward to the get together. Thursday, Zachie has an appointment at CHOP and we hope to spend the rest of the day at the beach. YIPPIE>>>>the boys are really excited about the trip. I just hope they do well on the 5-6hr drive.

Thanks to all for your continued support and prayers.

Love to all
Laura

Monday, August 19, 2002 at 02:40 PM (CDT)

DAY + 158

Good day all,

We had a wonderful weekend with the family. Colby was anointed Sunday at City Church of Connellsville by Pastor Brian. WOW-- the members of the church laid hands on Colby and we were standing in a river of tears. Pastor Brian asked Colby "do you believe that God will heal you here on earth?" Colby climbed up onto Jack's shoulders like a monkey and started blushing and smiling from ear to ear and said "YES" with such confidence in his voice. The look on his face was so sincere as though he already knows God is healing his little body. We know God has tremendous powers and we ask that he send blessings to our JMML families also.
To our JMML families: we will stand by each other through thick and thin and we will stay strong and not let this disease gain any ground in our children!!!!!!!!We love you all.

After that uplifting service, we went to visit Uncle Mark. If you remember he had a stroke in July. When he saw the boys his eyes glowed as I have never seen them. His face went from droopy to the biggest smile and he took a deep breath an said "COLBY & CAMERON". My eyes watered as I saw the happiness that the boys brought out in him. The boys were being wild of course but he didn't seem to mind. His eyes never left them during our visit. Colby even did a little physical therapy on his right hand. This is the side that is paralysed. He gave Mark an explaination why he has to do therapy too. Our prayers and hearts are always with him. He has progressed to using a quad cane and assistance of two when ambulating. WE LOVE YOU UNCLE MARK.

The evening ended with a visit to meet his couisin Jessica, her friend Erin, Aunt Shelly and Uncle Jerry. The boys feel in love with them. Thanks Shelly for the absolutely delicious meal and for having us over. The boys were tickled pink with the love bird. The sound of laughter filled the house all evening. They wore the boys out for the ride home.

Our JMML sister, ESPERANZA and her family have encountered some complications post transplant and could use some words of encouragement and alot of prayer. CINDY also has developed an enlarged lymph gland which may require surgery. And I know all of you have kept LUKE close to heart and in prayers---he is progressing and even starting to talk and is wearing some backs out wanting to walk up and down their home steps. Other JMML families continue to heal and are always in our thoughts and prayers.

To my husband who is ever so patient with all my mood swings: I LOVE YOU ENDLESSLY BABE!!!!

Colby had counts done today and Jack will be spending the evening at UTH(Uniontown Hospital) so Colby can receive PRBC's and platelets.
-hemoglobin 7.8
-platelets 34,000
-white count 3.8


Love to all
Laura

Friday, August 16, 2002 at 07:25 AM (CDT)

DAY +154

Good morning to all!!

Our internet services has been in and out so since it is up I am taking advantage of this time to update.

Last week a butterfly landed on Colby twice while we were in the pool. I told Colby that it was sent from God to heal his body. I have never noticed a butterfly land on a person. We were in the car Wednesday and Colby said "GOD could you please send an other butterfly to land on me so it will get rid of my cancer so I can have a real doggie and kitty cat"? My heart was filled with joy as I listened to him rationalize why he should have a real animal and just the fact that he realizes that God is the answer to all things. Well guess what? God is the answer and we have been blessed with His great power. Colby's BMA results from last Thursday were......................are you ready?..........are you sure?.................
Donor cells are now 35.2%----- can you believe it???? That is up from 14.5% twenty six days ago. There is a heavy burden lifted from our chest. I realize this isn't cure but it shows me how the Donor and Colby are really fighting together to beat this cancer. I can't thank YOU all enough for all your prayers and devotion to our little boy and our family. With the above results, our plan is still uncertain. We are waiting to hear from Dr Bunin. She had previously mentioned continuing the FTI for another cycle if Colby responded well to the first cycle. The donor is tenatively scheduled to donate on 8/19/02. A higher percentage of donor cells in the bone marrow will increase Colby's chances for the DLI to be effective and put him into remission. We are still trusting that God will guide the doctors to make the best decision toward Colby's cure. We thank God everyday and more, for keeping Colby so strong and for giving us the strength to travel this endless journey.

Love
Laura

***************UPDATE****************** I just spoke with Dr Bunin and the plan is for Colby to receive the DLI Wednesday August 21, 2002. They will observe him for an hour post transfusion and then be released to home. Amazing!!! She doesn't expect to see any graft vs host for about three weeks. We will continue to do our weekly clinic visit at CHP until we see signs that would warrant further evaluation at CHOP.
Keep us in your prayers.

Friday, August 09, 2002 at 10:49 PM (CDT)

DAY +147

Check out the new pictures in the photo section.

First, I want to say good morning to my husband.
<< GOOD MORNING BABE>> I know you check the website every morning. I LOVE YOU!! I LOVE YOU!! I LOVE YOU!!

I guess I will start with Colby's OR experience. The procedure actually went well with the exception of some difficulty guiding the catheter through the subclavian vessel, so Dr Miller had to insert it through his jugular vessel. OUCH!! He has been sore and very stiff. His neck seems to be the most uncomfortable site--he has four ouchies. One, where they removed his old broviac from left chest; two, where they inserted the catheter in the neck; three, where the exit site is on his right chest; four, where he had his bone marrow aspiration. Wow, I don't think I could have been so strong. I was able to encourage one dose of tylenol with codiene but now he won't take anything. Tonight, we were happy to see that he actually is getting around the house with minimal assistance, he must be feeling better.
His counts prior to surgery
-hemoglobin 10.4
-platelets 64,000
-white count 3.4
Jack and I are sitting on edge waiting for the results of the BMA--this is going to be a very long week. We will have a better idea of when the ball will start rolling. We are praying very hard and are nervious about the upcoming treatment plan. Our biggest concern is the unknown. With the BMT, we knew the plan and could somewhat prepare ourselves (if that is possible). GOD has given us strength thus far and I know he will carry us through our future journey. Colby remains strong and is in high spirits. He has even gained 2# over the past two weeks. He has been doing his exercises and loves to show everyone how he can do 10 push-ups. He has a lot of FIGHT in him and he sure does display it well.

Tonight Colby wanted to sleep in his own bed?????? Don't know what that means but we sure will miss him next to us. It is comforting to feel his little face and hands through the night. On the other hand, it sure will be nice to sleep next to my husband. It is very rare that we have any time alone.

Many prayers are going out to our JMML families. I know this isn't the only cancer out there, but it is the rarest and most difficult to conquer. MY LOVE to YOU ALL.

Love and Prayers
Laura

Wednesday, August 07, 2002 at 01:16 PM (CDT)

DAY +145

Hello everyone!
Just a quick update while the boys are being entertained by their good friend Gloria(she use to babysit the boys). Colby had his eye appointment yesterday with Dr Hughes. Great news---everything looks normal in that area. Colby was such a little soldier--the dr said that she has never seen a 4yr old be so cooperative. That's my boy. I am very proud of him--ALWAYS. His eyes brightened up and he had a smile from ear to ear when he talked to his "girlfriend" Mackenzie last night. He told her he would being coming back to school pretty soon--I pray he is right.

The plan is still fuzzy at this point. He is schedule for surgery tomorrow with Dr Kelly Miller. He will have his current broviac removed, a new one inserted and a BMA. The timing of the next step depends upon the results from the BMA. I am on bended knee praying for the least amount of cancer cells as possible (well really I am praying for no cancer cells but that might be unrealistic at this point). It seems as though all his physicians involved in his care are females. Many thanks to Patty who sent a prayer card "Our Lady of Lourdes" (also a lady). Coincidence?????? I drew labs this am and will be******
the phone just rang and it was the lab-
-white count 3.3
-Hemoglobin 8.1
-platelets 30,000
well with the above results, Colby will most likely be transfused with both PRBC and platelets. You know where I'll be this evening. I hope we don't have too much trouble with his lines!!!!

Thank you all for your many thought and prayers for our family, we are forever grateful.

Love & Prayer
Laura

Saturday, August 03, 2002 at 02:54 PM (CDT)

DAY +141

Wow, finially a chance to update. The boys are taking their nap. Thanks Aunt Mar for all the wonderful care you have been providing for the boys, and thanks for all the delicious meals. Colby's favorite is Aunt Mar's meatloaf. He ask for it everyday.

Since Marge is on vacation this week, Grandma and Happy have been caring for the boys almost everyday. WE LOVE YOU!!!! I really don't know what we would do without them. They are ANGELS.

The week again has flown by with very little space to breathe. Dr Goyal(Colby's BMT doctor), his wife and two children were in a very bad auto accident. Their conditions are improving but they will need time to heal from this devastating event. Please keep them in your prayers.

Colby's platelets took a dive to 22,000(transfused at Uniontown Hospital on Monday). Hemoglobin actually went up to 9.8 and has been maintaining. Many thanks to all the folks at our lab, they have gone above and beyond and we are ever so thankful. The platelet transfusion bumped him up to 48,000 on Wednesday and today they were 40,000. No transfusion this weekend. White count has been holding between 4.0-5.6k.

As you all know, we have been torn with the decision towards the next step in Colby's relapse and with deciding the best place for his treatment. We have come to peace with ourselves and will be taking him to Dr Bunin in Philly. The DONOR has consented to doing the DLI--GOD BLESS THIS PRECIOUS LADY. The tentative date will be August 19th. Right now we need to finish the current cycle of FTI and do a follow up BMA. The doctors haven't told us the exact day for the BMA and we will be anxiously awaiting the results from this procedure. Colby's broviac catheter(blue port) is still clotted even after TPA(clot buster) given at clinic on Wednesday. The preliminary report of his echo did not show any clots at the tip of his line. WHAT a RELIEF but the complication with the catheter have been numerous. The current issue is that in addition to being clotted it also has a weakened area which balloons out when they attempted to flush it. The plan is to remove his current broviac and have a new one inserted. I pray that they can coordinate this procedure with his BMA.

Now, I am beginning to deal with insurance issues and employee work status(currently fulltime). Lisa, from Colby's PCP(Dr Timothy) has been a GOD sent. She has lessened my burden and is ever so helpful. Thanks a bunch Lisa!!!! Colby is our only concern at this time and all the other thing will fall into place somehow.

Jack has been having a really hard time with us being torn apart again. I pray that he continues to stay focused and strong. Oh how I adore him. He is a wonderful man and I was blessed that our paths crossed. It has been challenging for us due to the demands of home and work but we are strong. Hey Babe, "STRONG LIKE BULL". I LOVE YOU!!!!I LOVE YOU!!!! I LOVE YOU!!! It is kinda funny that sometimes the journal is our source communication too. He comes home and I leave for work. Thank God for Caringbridge.

Gina from CHP came to visit for a couple days. She is still healing from her back surgery. Colby really enjoyed his time with her. Love ya Gina.

Please continue to keep our dear friend Mark in your prayers as he continues to heal from his stroke. We hope to visit with him soon.

I really don't know when we return to clinic but it will be sometime next week.

Love and Prayers
Laura

Sunday, July 28, 2002 at 12:54 PM (CDT)

DAY +135

Sorry about not finishing our update regarding the trip to Philly---Colby intercepted me and jumped on the computer and then it was time for work.

The trip to Philly and meeting with Dr Bunin was a much needed reality. Being told the truth about Colby's relapse was by far not what we had expected. We were under the assumption that if other treatment options failed, he could still have a second transplant. The fact is that since Colby has relapsed so soon after transplant and the fact that he received TBI really doesn't place him in any position for a second transplant. A second BMT could be extremely toxic. WOW!!! what a mouthful to swollow. His chances for "quality of life" are our biggest concerns. We are fearful that we may cause unbelieveable suffering to our precious son. The first BMT was difficult on the entire family and mostly Colby. Although he sailed above the waters and didn't get nearly as ill as many of our JMML families, the suffering he did endure was as much as we could handle. He hasn't had time to recover from the first BMT. It is very difficult to watch a child go through what these children live with and accept. His bone marrow aspiration from 7/22/02 showed about 15% DONOR cells. This is only down 1% from when he started the R115777 drug. Dr Bunin strongly believes that if the drug does not have much of a response after the first cycle then we should really consider DLI(donor lymphocyte infusion)while there are still some donor cells left. The risk with DLI are
1) no response
2) severe GVHD which could be life threatening
3) aplasia of the bone marrow(destruction of all cells) which would require an emergent SCT(stem cell transplant). Either way, patients who relapse within 100 days of BMT is associated with high mortality and a low rate of complete remission.
With all that information, we are still reaching to God for the best path to follow. Dr Bunin is going to contact a specialist in Kanas City and she gave me a number of an other top rated BMT hospital in Seattle which I will contact on Monday.

After that reality shock--Dana Doctor and family were waiting with open arms!!! It felt so comforting just to embrass her and to see little Zachie being a typical 2yr old. We spent the evening chatting of course about JMML. Not many people get to meet their Angels in person so I am really blessed in more ways than one. She is truely a beautiful person. Jack and I really enjoyed watching the boys play and little Zachie is a true miracle child. Thank you Dana and Stuart for welcoming us into your home. We had a fantastic time and I can't wait until September for Zach's 1 year celebration party. Stuart, you are wonderful father and you have the patience of a Saint. When we were leaving, Zachie hopped into Colby's car seat and actually allowed us to pull out of the driveway. He was waving and saying bye-bye to mommy and daddy. I am sure if they would have been out of his sight, he would have gotten very upset. I was impressed that he took to us so well. WE LOVE YOU GUYS!!!!! Get ready Zach and Kyle here come some more kisses XOXOXOXOXOXOXXO.

Cameron and Happy were walking up the driveway when we came home. Jack had to stop the car so I could jump out and give my little Cam-man a big hug. Colby was in the house with Grandma and gave me a hug that I will never forget. Colby had been showing Grandma how to work the computer and he was thrill and so proud to show us his project that he had made while we were gone. What an ANGEL.

I went to work last night and found that the girls had made a bulletin board titled "COLBY'S CORNER". It has newspaper articles and pictures all about Colby. You guys are fabulous and I am very blessed to be working with such caring people. You guys help me to stay strong. LOVE YOU ALL.

Thanks for all the wonderful and uplifting guestbook entries. The entries really keep us going knowing we are not alone in this battle.

Please keep our other JMML families in your prayers. I haven't learned how to do links to the other pages but if you look in the guestbook entries (the older ones) you will see their web pages listed under caringbridge.com/
ZACHARY
LUKE
CINDY
KAYLI
JACOB
LIBBIE
BRIAN
ESPERANZA

A special thank you to Gram and Happy, Aunt Dee, Aunt Mar, Aunt Lynda, Uncle Bill and BJ for caring for the boys while we were away. WE LOVE YOU ALL ENDLESSLY.

Hanging onto faith
Laura and Jack

Saturday, July 27, 2002 at 06:24 PM (CDT)

DAY +134

Hello everyone

It has been some time since I have posted. Alot has been happening and alot to absorb!!!! I feel like a rock instead of a sponge.
I will start with Friday the 19th
Colby had been complaining of "not feeling well" that day and when I went to work I retrieved his labs that he had drawn on Thursday--Well, I was told that his labs were "holding". I don't consider a hemoglobin of 7.5 from 8.4 just 2 days before holding. He had a repeat CBC on Saturday and low and behold his hemoglobin had dropped to 6.4(he was very symptomatic with the low counts). After talking to the doctor a blood transfusion was arranged and we were able to have it done locally. We stayed home until the blood bank called and said the blood was ready. Jack went with Colby to Uniontown Hospital to received his transfusion. They didn't get home until 2:30am but if you consider the time that would have been spent going to CHP--we were pleased.
Sunday July 21st, Colby requested to go to church and say his "healing prayer" in front of the congregation, so we did just that. He said it perfectly. We are sooo very proud of him.
Monday July 22nd, clinic day
What a nightmare!!!! Nurse Ann was on vacation and he was NPO(nothing by mouth) for his BMA (bone marrow aspiration). We were playing musical rooms. We waited patiently for 3hrs before anything was even started. When Colby started crying that he was "hungry"---I lost my cool. His weight had dropped from 15.3kg to 14.9kg in just a few days and eating has become an issue once again because of the new drug R115777 which must be taken with food for better absorption. We finally went into the special procedure room only to encounter another obstacle. The choice of sedation for the BMA was fentanyl and versed. The doctor in the clinic refused to use fentanyl so we had to wait for Dr Goyal to come and give the sedation of choice. I then was questioned about my medical position. Can you beleive that??? I only know what is best for my son and that comes from being a mother----not an ICU nurse. The procedure went well and Colby got very silly and kept repeating "strong like bull" instead of crying. He said "I love this place, I love you doctors". He had no adverse effects post procedure and after he received his Pentamidine we were on our way home. He has never complained of discomfort from the procedure. He is such a strong little boy. I wish he didn't have to endure such events. The results from his BMA on 7/12/02 (before the R115777 started) revealed only 16.5% DONOR cells.
Aunt Dee came Friday night from Ohio and spent time the boys. They were so excited and didn't leave her side. She has such a wonderful bond with them. Colby of course, didn't get very much rest because he didn't want to miss one minute with her. Thanks Aunt Dee for all your help with the boys and with the house. We love you.
Many thanks to Aunt Mar who has been coming and watching the boys while I get sleep after working night shift. She also is a great cook and we appreciate all the wonderful dinners.
The week went by fast and labs were drawn on Thursday. Hemoglobin was only 7.9. Another call to the clinic to arrange blood transfusion. Jack and I would be going away Friday and wouldn't be home until Saturday evening. Colby was transfused at Uniontown Hospital and we encountered much difficultly with his broviac. Thin fluid would flow fine but the blood(thick) kept occluding his line. I really don't feel comfortable with all the clotting problems we have come across lately and we have arranged to have an echo of his heart done on Wednesday July 31st. It should have been done with his day 100 evaluation.

Love and prayers to all
I am closing this entry now and will start another entry for our visit with Dr Bunin. I have in the past lost entries when I have been on to long.
Laura

Friday, July 19, 2002 at 08:48 AM (CDT)

DAY +126

Good morning all,
To start I will give an overview of Colby's short admission. We went to CHP Sunday evening. I felt really bad that we left while Cameron was sleeping. I just wasn't strong enough to see him cry and cling to me like glue. Sorry, Jack. I know from experience he can be a handful when he wakes up and ask for his "mommy" in those two year old repetitive sentences. Thanks Grandma and Happy for being there and taking such go care of him once again while we were at CHP. We stopped at the toy store before going to the hospital. Anyone that really knows Colby---this takes hours. He made very wise choices, and as always he had the coolest room of toys on 8 south. We did visit 8 north staff and we spent alot of time in the play room. We even went for a walk(well I walked and Colby rode in the stroller). Congrats to Karen one of the nurses on 8 north. She is expecting her first baby. Jamie was there with open arms. Colby charmed the girls on 8 south. Many thanks to Cathy and Becky for keeping Colby entertained while I went to visit a dear friend of ours. Uncle Mark had a stroke and was in the hospital. He always came to see Colby every admission. Our thoughts and prayers are with him for a speedy recovery and healing process. WE LOVE YOU UNCLE MARK!!!!!XOXOXOXO. Thanks Gayle(the child life specialist) for the coolest scooby doo socks. I had a hard time conviencing him that they needed washed after two days of wearing them. Many thanks to Bev from Make A Wish, who came to visit us in the hospital. The gifts were much appreciated and they kept Colby entertained for days. Cameron loved the cars.
The first night we both slept very well. Monday, Colby started FTI and had numerous blood draws. He only received one dose at 8:00am and then pharmacokinetics(drug metabolism studies) for 36 1/2 hours. He seemed to tolerate the drug well with the exception of his enhanced sense of smell(Colby's way of being a little nauseated) and along with that his appetite dropped to about half his new normal. We were able to leave after the last blood draw which was 8:45pm on Tuesday. So off we went. Colby enjoyed his stay and it was rather nice just to play with Colby and him not being tied down and restricted to his room. When I would talk to Cameron on the phone, he would ask if we were home yet? When I replied no, he would get off the phone and wouldn't talk to me anymore. On our way home I called and talked to him and told him we were coming home!!! He waited up for us until 10:30pm. I had to read every book (6 total) that I brought for him. When I put him to bed, I couldn't help but hold him tightly even after he was fast asleep. Thank you Babe for keeping things together at the home front. It feels good to be home.

Thursday, was the big day!!!! Make A Wish volunteers, Todd and Jill and from Carnegie Mellon University were David, Ethan and Alok who delivered Colby's robotic dog called AIBO. Although he doesn't pick up Colby's toys yet, he does have special programming to sing "Feel like a Woman and I'm in the Lord's army". He even dances, plays ball and does the Power Ranger theme song with all the moves. He is really cute. I will put a picture once I get them developed. We celebrated with friends and family. Jack, Virginia, Tim, Charlie and Eric did a beautiful job preparing the outside with banners, balloons and even a wagon for the children to go for a hay ride. The rain didn't seam to be a problem but it did rule out the hay ride. Every one had a great time and most of all Colby had a BLAST. He was surrounded with his closest friend and of course his "girlfriend" Mackenzie and cousin BJ.

Thank you every one for being there for Colby we LOVE you all.

Love and prayers
Laura
Jack
Colby
Cameron

update: Colby's labs are holding and we are still waiting for BMA reports from last Friday. We will most likely find out on Monday's clinic day. He will also have another BMA Monday and some lab studies done per the R115777 protocol.

Our appointment with Dr Bunin will be next Friday July 26th in Philly. We are looking forward to this meeting and hopefully meet The Doctor family. Did you hear that Dana?

Saturday, July 13, 2002 at 06:28 PM (CDT)

DAY +121

Hello all;

Thanks for all the encouraging words and prayers. They are very uplifting.

Colby had his bone marrow aspiration and spinal tap done yesterday. His counts as expected were low so he needed to receive a blood transfusion before they would take him in the OR. We were ON CALL. During our wait, they decided to do the procedures in the clinic. He received fentanyl and versed IV for the procedure and he went from crying to laughing and being silly after the drugs took affect. He had us all laughing. The procedure went very smoothly and Tammy was in and out before Colby realized what was going on. After the drugs starting wearing off he was very tearful and emotional. He kept kissing my face then my hand. Then he would say "my mind just kepts telling me to kiss you and I can't control my mind". I really enjoyed the kisses. Well, the blood wasn't ready until 1:30pm, so I guess it was best to have one thing out of the way. Needless to say they still had not called us to the OR at 5:00pm. Things have a way of working themselves out.

Today, Colby was a little sore and said "I can't walk because my back hurts" Tylenol seems to be the drug of choice for comfort. And of course, when it came time to go play things were feeling better.

His latest counts:
-hemoglobin 7.1
-platelets down to 58,000
-white count 13.9
-ANC 8800

We should know BMA results in about a week.

Colby will be admitted tomorrow evening for his R115777 Leukemia protocol. We should return home by Wednesday. I will update when I can.

Thank you for checking in and God Bless You

Love and prayer
Laura

Thursday, July 11, 2002 at 07:24 AM (CDT)

DAY + 118

Thanks everyone for checking in and for your thoughts and prayers.

Update:

Friday, Colby goes to have a bone marrow aspiration, spinal tap and a series of tests prior to starting FTI(R115777). We had to reschedule our appointment with Dr Bunin. He will be admitted to CHP on Sunday night, start the FTI Monday morning and stay for 36hrs of blood testing.
Jack and I pray that we have made the best decision for Colby's well being and comfort.

His spirits are high and he has had a few visitors over to play. Aunt Lynda, Uncle Bill and cousion BJ came Monday and stayed with the boys while I went to work 7pm-7am. Tuesday evening Aunt Diane, Uncle Bobbie and Taylor came and brought a truck load of toys for the boys. Wednesday, his "girlfriend" Mackenzie and her mom Paula came for an afternoon of fun with Colby. Even though Colby had some moments of inappropriate behavior and lack of manners, she tolerated his temperment well. He really enjoys the company and seeing his friends. He ended the day by spending the night at Grandma and Happy's house.

Many thanks to the ICU staff for calling me off last night for low sensus. It was the first time I got to bed before midnight in some time. I feel very refreshed this morning. Girls, you know that Darlene will see your guestbook entry. I don't think she would mind. She has been wonderful with the situation and very understanding. I love you guys. Thanks for being there!!!!!!

Colby did start a new medication(allopurinol) to decrease his uric acid levels caused from the destruction of cells. His comment was "you take one away just to add another one". Gosh, he really understands too well. His belly continues to swell and his nights are restless. His appetite has taken a dive due to the abdominal fullness. He now wears his shorts and pants below his belly button.

He will get labs drawn today and I will have the results later. I really don't want to see them, I already have an idea where he is at with his counts.

I will update later. I did put a picture of Colby from our 4th of July celebration. We were hoping that as we celebrated independence day that Colby would too. God has other plans for us and we accept it knowing he is with us and carrying us through the rough waters.

Colby's Make A Wish robot will be delivered Thursday of next week. I am looking forward to seeing his excitement when it is presented.

Love to all
Laura

Monday, July 08, 2002 at 01:45 PM (CDT)

DAY +115

Hello to all
clinic day with Colby and Jack today.
-hemoglobin 8.3
-platelets 74,000
-white count 11,000
-ANC 6700

Well here goes--as the leukemic cells are fighting for space in the bone marrow, they are causing limited space for red blood cells and platelets. Colby's white cells are immature and really serve no function. His immunity is becoming even more compromised and extra prcautions are needed to keep him safe. With the shift in cells, Colby will require more blood (PRBC) and platelet transfusions. The FISH test from last week revealed 50% male cells (Colby's JMML) and 50% female(donor). Two weeks ago he had 67% donor cells in his marrow. His disease is progressing very rapidly and quick actions must be taken. We were hoping to use the donor lymphocyte infusion (DLI) as a next step but the course of treatment has taken another direction. The turn around time to even collect the DLI is approx. 4weeks and that is if the donor is agreeable. Something needs to be initiated now. As much as we did not want to use the experimental drug farnesyl transferase inhibitor(FTI) our options are such that this drug may hold the leukemic white blood cells from overtaking the marrow. This is only a temporary action. It would be less toxic than chemotherapy. We will be meeting with Dr Bunin at Childrens Hospital of Philadelphia on Friday for a second opinion. After speaking to her briefly today--she also feels this drug may buy some time at this point until the DLI is available.

As each day passes, I can visualize the cancer cells running through his body. He has increased bruising and his color is pale. His energy level is declining and his little belly is becoming full. His spleen is not yet palpable but it is only a matter of time. It breaks my heart to see this happening in front of my eyes.

Many thanks to our friends and family for supporting us through this difficult time, and to all of you that have been working overtime helping us research options and spending hours on the internet looking for a loop hole.

To our JMML families who have shared with us their experiences and wisdom, we love you all and we are still fighting.

We continue to pray that God will lead us down the right path and we continue to have faith in HIS Almighty Power.

There are alot of discussions and plans being made as we speak. I will update with information as we receive it.

Love
The Cole's

Friday, July 05, 2002 at 01:51 AM (CDT)

Day +112

Hello to all
As you can see by the time of this entry, I can't sleep. I am not sure if it is that I have my days and nights mixed up from working night shift or if it is just from the constant pressure of making the best decision on the next step in Colby's treatment. Since the relapse, Jack and I have been endlessly researching information. Many thanks to Dana Doctor---she has been sending us information on the most recent studies involved with JMML.
Monday was clinic day.
-hemoglobin 10.4
-platelets 101,000
-white count 5.1
-ANC 3400
Since last Friday, Colby has been weaning his cyclosporine so no need to do levels. After much begging--they did do a FISH blood test(it is a test that can determine the % of female cells in his peripheral blood) You would have thought I was asking for their life. Sometimes I don't understand why doctors can't get past the medical wall and put themselves in our shoes. The test will be just a baseline on the status of relapse without the invasive bone marrow aspiration. I am very angry!!! We are faced with making a decision on whether to do DLI "Donor Lymphocyte Infusion" or an experimental drug called FTI "Farnesyltransferase inhibitor R115777". As a mother, I feel that the experimental drug should be used a last resort and would like to try the DLI first. The doctors at CHP don't feel the same. So we are butting heads right now. My husband keeps saying what happened to our input and the patient's rights? Their remark is "a relapse is a relapse and it doesn't matter how much of the bone marrow is donor cells". Well excuss me, I don't agree. We of course sought out the opinion of another specialist who has had success and much more experience with JMML than CHP. She also strongly suggested the DLI as the next step. We are arming ourselves with info so we can feel comfort in our decision because with JMML there are not absolutes and now that we are dealing with relapse, it is a different ballgame. I pray constantly that God will lead us in the best direction and one that will cause the least suffering for our son Colby. His comfort is our main concern. If any one has any input on the subject PLEASE email us either through the guestbook or our home email located below. We don't have time to waste. As each day passes, Colby complains of symptoms that we know are from the recurrent JMML.


Colby was excited that Daddy came along to clinic and I was too. Colby's eyes just light up when his daddy is around. They have an unbreakable bond. It warms my heart to see them together. This past week has taken its toll on us physically and emotionally. I find it very hard to talk now days. Everyone seems to be at a loss for words. There is much silence when people see me. I dread the question "How is Colby doing?" Although everyone has good intentions. Please continue to pray for him and for Jack and I to make the best decision in Colby's next step.


As we ask for extra prayer, we also ask that everyone keep Luke Do and family in prayer www.caringbridge.com/ca/lukedo
And Libbie who just had a BMT
www.caringbridge.com/tx/princesslibbie

Love to all
The Cole's

Sunday, June 30, 2002 at 02:07 PM (CDT)

DAY + 107

First, I want to thank you all that follow Colby's journal for keeping us inspired by your guestbook entries. We need the support and prayers more than every now. As many of you know, Colby has done exceptionally well as far as going through the BMT process. Up until now he was winning the battle with JMML. His BMA which was done on Monday, day +101 revealed devistating results. I received a call from Dr Goyal Friday at 2:45pm and I am sorry to say that Colby has RELAPSED. His first BMA showed 100% donor cells at day +31. He now has 33% of his own bone marrow which means his leukemia is back. Donor cells are 67%. There is still a chance that he can recover but at this time we are working on a plan of treatment. He will see the BMT team tomorrow (Monday). Since Friday, they cut his cyclosporine in half (35mg twice a day) and increased his cis-retinoic acid back to everyday. We are praying that this will cause a little GVHD and give the donor cells a chance to fight the leukemia cells. If this plan doesn't work, the next step is to start with the experimental treatment plans which we will discuss tomorrow. Jack and I are in shock!!! It has been very hard to tell our family and friends but it is also necessary so the prayers will carry us through this bump in the road. I, as any other parent of a child with cancer, fear the word RELAPSE. JMML relapse usually occurs soon after transplant. It is a very aggressive cancer and our actions and treatments must be very aggressive. This was the most difficult entry to type but Father Bill came today to do a healing prayer with Colby and also with Jack and I. Through the power of God I was able to sit at the computer.

I am very fortunate and blessed to have such a supportive JMML family. They have been my strength since we found out about Colby's relapse. Many thanks to Dana Doctor. She as always has held my hand through out this process. She has lead other JMML families to us and we LOVE YOU ALL. We never stop praying for healing for all these children.

When you look at Colby, he still resembles a normal healthy child with the exception of very short hair. He is fairly active and laughs and jumps around the house as he did before. He is very strong and I feel he has special power far beyond the understanding of human beings. He is still our "EARTH ANGEL" and we are forever honored to have him with us for as long as God has planned.

Please continue to pray for Colby and other children who may be faced with illness and the parents who must watch their precious child battle against the odds.

Love and Prayer
The Cole Family

Monday, June 24, 2002 at 11:02 PM (CDT)

DAY +101

My heartfilled thanks to everyone who has been praying for our friend Matt Conover. He is tolerating the weaning of the ventilater and hopes to soon return to 8north at CHP. His web page is www.caringbridge.com/ma/mattconover--your guestbook entries would bring comfort to the family. Keep the prayers coming.

Clinic day for Colby
-hemoglobin 10.4
-platelets 123,000
-white count 2.9
-ANC 1600
-weight is up to 15.4kg
kidney functions are a little high but suspect that he is a little dry from the hot days and the NPO(nothing by mouth) status in order to do bone marrow aspiration and biopsy today. Once again Colby did not get sleepy from the sedation. It did make him very tearful and cranky. Boy can he shout out some orders. Over all, he tolerated the procedure well. Jack got a taste of "a day at the clinic with the boys". Cameron was climbing the walls so I had to step out in the hall in the middle of the procedure. Jack stayed to comfort Colby. I was very surprised that Colby hasn't complained of any discomfort since the procedure. Tomorrow is another day. Cameron's exam was a "wait and see" type of deal. Nothing to worry about I guess??????

Nurse Anne had the magic touch today. She was able to get the blue port of his broviac to work and they used TPA in the red port. It also worked once we got home. I must say, Colby was such a brave soldier. He said "Nurse Anne, you are going to have to use a butterfly in my arm today and I will only cry for one minute, then I will be okay". During the bone marrow aspiration(when they insert a needle into his hip and take samples of bone marrow) he told Tammy "please just take it from my arm". I felt so bad for him.

We took a ride to the playground this evening. It feels good to get out a little with the boys. Yes, we still have restrictions. Hopefully after the results from the bone marrow aspiration in about a week, we can start weaning his cyclosporine and have a little more freedom. The doctors want me to make a list of restriction that we can talk about next clinic visit. Does anyone have a large scroll of paper?????

I would like to thank you all once more for keeping us in your prayers.

Love
Laura

Sunday, June 23, 2002 at 10:44 PM (CDT)

COLBY MADE IT!!!!! DID YOU HEAR ME???HE MADE IT to DAY 100. This is a big milestone with a BMT patient. Thank You LORD for this great gift and thank You for all You are doing for my family. Praise God for his work. He has been working overtime.

The end to an exhausting week. Colby is completely played and partied out. We are ever so greatful for everything YOU all have done for Colby and our family. My heart overflows with love and warmth to each of you (I just don't have the energy to show it). I am still in ah with all the community support. We have been BLESSED.

Saturday, "Chef Joe's Omelet Run" was very refreshing and enjoyable. I am very sore today from that 3mile walk. Boy, I am really out of shape. The walk was the first actual physical exercise since Colby's diagnosis back in January 2002. Colby and Cameron rode in a wagon. It was a nice turn out dispite the hot weather. Congrats to the winners. By coincidence, Colby finished eating his breakfast which was provided after the event and Chef Joe called his name to receive a trophy----so initially he thought he got the trophy because he ate all his breakfast. Boy can you tell what our priorities have been??? He is so proud of his trophy. His eyes light up every time he talks about it. Many thanks to all the volunteers and participants. Thank you Joe & Stacy Carei for all your hard work. Joe has been undergoing chemotherapy for cancer and God has given him the strength to continue to help others. I admire him.

Today--Sunday June 23, 2002 a celebration party was held for Colby. The Vignali's really know how to throw a party. The surprises were never ending. First, a petting zoo; then a hot air tent for jumping; a karote lesson by Mark for the children; food provided by Richie's; an appearance by Spiderman; Barney and then a special dedication song to Colby by Shania Twain(look a like)who sang "I feel like a woman". If you can recall back during BMT, we would dance and sing to Shania in our room. Colby was also honored with an autographed photo of his favorite Power Ranger, Tommy and a picture of Spiderman with Colby's name in the web. And of course the best for last was Tammy from the clinic. Thank you Tammy for coming, it really meant alot to me to have you with us for Colby's celebration. You of all people know what an important day this is. We love you. You have been my main source of information and you have been wonderful with Colby. I would also like to thank everyone who came to celebrate with us and for those who couldn't make it--we know you were there in spirit. For some, this was the first time meeting the little boy they have been supporting and praying for since January. These social gatherings have been such an uplifting treat for Colby who has been isolated for such a long time. Thanks for the cool gifts. Colby will really enjoy them (Cameron will too). Virginia, you know us too well. Colby was so exhausted by the end of the day that he was very quiet and calm. Tammy don't worry he will be full of energy by tomorrows clinic appointment.

Our thanks to the Vignali family. You have made Colby a part of your family and I was honored to finally meet the General's army.

Yes, clinic tomorrow. Tammy will do a Bone Marrow Biopsy and we will wait anxiously for the results in about a week. Well, one not so good thing is that both of Colby's broviac ports are now clotted off. This means a needle stick tomorrow. I am glad Jack is joining us for the first time. Great news is that Dr Shaw will also see Cameron tomorrow to ease my mind about some things that have been developing and we will have a discussion about lifting some of Colby's restrictions.

Please continue to pray for our friend Matt Conover who has relapsed with his lymphoma so soon after BMT. He and his family need our prayers and a miracle.

As always love and prayers

Laura

Thursday, June 20, 2002 at 02:12 PM (CDT)

DAY +97 WOW!!! DAY +97

Well, where do I begin???
So much has been happening. Our community deserves an award for all their efforts and support. They have overwhelming energy. Our heartfilled appreciation and endless thanks to all. I wish I had the time to thank each and everyone of you personally for your support.

First I will start with clinic day
Cameron, Colby and I arrived at clinic promptly at 9:10am and we made a day of it (literally). I thought it would be the usual one to two hour visit with IV pentamidine, labs and exam. Well, once the lab results came back thing suddenly changed. Colby needed to have a blood transfusion. Which any other day it wouldn't have been such a surprise as it was today. He had no overt symptoms of anemia and the fact that Cameron has been irritable with his two year molars coming in didn't make it any easier to keep him content during the long visit. I was extremely proud of Colby. He tolerated the day very well. We watched a video called "Sandlot" and laughed hysterically.
counts
-hemoglobin 7.3
-platelet 133,000
-white count 2.2
-ANC 1500
-cyclosporine 280
liver and kidney functions results acceptable.
I did save the blood tag for Colby's scrap book. This was the first time he was typed as A+ when receiving blood products. He received O- blood. No A+ blood products until the distant future. The blue port of his broviac catheter is now clotted off so he did get some TPA(clot dissolver)but so far not effective.

Colby had a fantastic time at the carnival on Monday and Tuesday. He was thrilled to see his old schoolmates. They all came to support him. My heart was filled with overwhelming joy while my eyes were filled with overflowing tears as I watched his interaction with the children. The children and their parents touched my soul with their presence and filled a void that I have been longing for. I love these parents and children as though they are my own. Thank you guys for being there!!! We love you all.
Many thanks to the Vignali's and the Mahoney's for all the time and hard work organizing the event. And many special thanks to the carnival staff and the community for their support. I hope everyone had a good time.
That's not all. Colby has made more headlines than the President this week. Just maybe he is preparing for his future roll in the public eye. Maybe he will become President one day. Only God knows his calling in life and we will just have to wait and see.
I need to thank everyone for dealing with me over the past week or so. It has just been one of those weeks of exhaustion, lack of sleep, and the raging surges of hormones. ONLY A WOMAN can understand the effects of PMS coupled with the role of mother, wife, housekeeper, teacher etc. My husband has been extremely worried about me. Rest assure my darling husband, I haven't lost it. I love you dearly and thank you for being so concerned with my well being. I LOVE BABE.

To my best friend and sister Lynda, I don't know what I would ever do without you. Through all my emotional times you always seem to bring comfort and acceptance with any situation. I LOVE YOU.

And last but not least to the girls I work with >>> thank you for allowing me to vent.

Please keep us in your prayers. The power of God is mighty. There are many children that are fighting for their lives each and every second of the day and we pray for God almighty to watch over them and give them healing. To the parents: each situation is quite different but the pure torture of having a sick child or family member is emotionally and physically draining. May God continue to give us strength and faith to go on.



Love and prayers

Laura

Thursday, June 13, 2002 at 10:02 PM (CDT)

DAY +90

Wow, what happen to the week. For those of you following Colby's progress, the weekend was uneventful!!!!!No fevers, no headaches and no more boo-boo's. Actually something good did happen Saturday. I was changing Colby's catheter drsg and caps and attempted to flush and aspirate from his red port on the broviac(this is the one that was clotted off last week) and to my surprise there was a blood return and it flushed well. After his broviac was repaired at the clinic, I had pinned his broviac to his necklace(with his guardian angel medal) because it is so long. Think what you may. Medically the TPA(clot dissolver) may have played part but on a spiritual level his guardian angel has never let him down. Either way, I am just glad it is functioning again.

If you all recall, Colby needed labs on Monday which had to be taken to Pittsburgh. My ever so thoughtful and wonderful husband arranged for his employee to transport the Colby's blood to the clinic. Thanks Tim!!! The results of both Monday and Wednesdays clinic visit are as follows:

MONDAY --------------------WEDNESDAY
-hemoglobin 7.9---------------7.9
-platelets 165,000-----------186,000
-white count 3.2-------------4.1
-ANC 2200---------------------3100
-cyclosporin 163--------------246
liver functions normal and his kidney functions have gotten better which explains the reduction in his cyclosporine level. Of course his cyclosporin dosage was increased to 70mg twice day. His blood typing is now a STRONG A+ ***this is the donor's blood type. Hopefully his counts will be more stable now.

Colby had his eye exam today*********PERFECT 20/30 vision and no signs of intracranial pressure, hemorrhage or keratoiditis(fancy word for inflammation of the cornea). Colby did exceptionally well with the exam and even the eye drops. Dr Biglan was very good with him and Colby repeated the medical terminology better than I could. No need to return unless further complications arise with his eyes.

June 10, 2002 was the Dr Darrell L. Abel Golf Tornament which raises money for MAKE A WISH Foundation. Colby is one of the recipients this year. The proceeds will go toward his wish which was 1)roller coaster ride 2)a robot to pick up his toys 3)for his kitty cat to come back home. The only appropriate one that is in the works was the robot. It will be a robot dog called "AIBO". Currently they are working on software so the robot dog will follow Colby's commands. Oh boy this could be interesting. It sounds very exciting. I wonder if it can do laundry and dishes too???

The next big event is "COLBY'S CARNIVAL" which will be held June 17, 18, 19 at Laurel Highlands School in Uniontown. Many heartfilled thanks to Tim Mahoney and family and General Elaine Vignelli and family for all their hard work and planning of the event. Also many thanks to the local polititions for their support with the event. And most of all our thanks goes to the everyday people in our community that have supported Colby and our family through out this journey. Tears fill my eyes each time I think and thank God for such loving and caring people. "God rewards those who give of themselves" Without you all I can't even imagine how we would have gotten this far. Colby doesn't quite understand the magnitude of the illness or how everyone has been working so hard, but one day when he is older and reads this journal he will see how mommy and daddy could not have stayed strong enough to survive without all of YOU. Many thanks for all of your prayers and thoughts of our SON and family. We love you all. Thanks to Caringbridge for the free web page. Thank for signing the guest book. Colby really likes all the words of encouragement.

Thank you Kathy Z. for your generous donation to Colby. The Longaberger basket project was a success. Many thanks to those who sold and purchased tickets. You all have hearts of gold. As for Vickie Lu--give someone else a chance to win a basket. Just joking.

PS: Pictures will be coming soon. before I had a chance to save them the power went off and I lost my hours of cropping. I hate when that happens. Thanks for being so patient.

God bless

Laura

Friday, June 07, 2002 at 06:12 PM (CDT)

DAY +84

Hello to all,
The Cole's have been very busy this week. Since our last clinic visit there have been some ups and downs. For example, Sunday Colby had a minor boo-boo. He fell off of Cameron's tricycle and busted his upper lip, skinned his nose and forehead. He had a panic attack and screamed when he saw his own blood. Poor kid had more tears than blood. It was healed up in two days. It didn't interfer with his eating, drinking or playing. He spent Sunday night at Grandma and Happy's house. This was his first night away since way before BMT and I am sure they enjoyed all their cuddle time.

Colby had a very restless sleep Monday night. Finally at 2:00am he told me he had a "frontal headache". This boy's medical terminology really scares me sometimes. Some oral tylenol relieved his discomfort and he slept well the rest of the night. Of course a big flag went up because these were the same type of headaches he had for two years prior to his diagnosis of JMML. Well the day proved to be "just one of those days" where if anything could go wrong it would. After our swimming in the pool, I changed Colby's broviac dressing and couldn't get a blood return from his red port. As I tried to flush the line--saline squirted all over him. Whoops!!! His blue port was uneffected thank God. He did get it repaired at the clinic on Wednesday but the red port is clotted off and the only functioning port is the blue one.
I don't think Colby would be very cooperative with needle sticks quite yet and even more so now since he is so irritable and tempermental.

Clinic day ----Wednesday June 5, 2002

counts
-hemoglobin 8.7 down a little
-platelets 137,000 up a little
-white count 3.6
-ANC 2800
-cyclosporine level again elevated at 330. Lucky for Colby we held his evening dose and decreased his dosage to 65mg (.65cc). His kidney functions are slowly creeping up so we will have to force more fluids to keep the kidneys flushed out. His magnesium level is still holding at 1.3 so no intervention at this point.
After the above findings and the issue of frontal headaches Colby will see an opthalmologist next Thursday to rule out papilledema--which is swelling and inflammation of the optic nerve. Keep your fingers crossed and say an extra prayer that findings will be normal.

This morning Colby complained of another frontal headache---after talking with Tammy, his cis-retinoic acid will be held for a few days. He also has developed a low grade fever 99.2 so far. If it continues to increase over the weekend he will need evaluated at CHP. The other down side is that I am scheduled to work three nights in a row. If things go well this weekend, we will drop off blood work at the clinic on Monday and keep our Wednesday appointment next week. This means a three hour round trip with the boys. They will have someone waiting at the corner and all we have to do is drive by and hand them his blood. This activity would look pretty suspicious to a by-stander or even the police. Oh well, what ever works.

Love and prayers continue to our unfortunate families that are fighting illness and even death. May God continue to watch over and bless us each day with our son Colby.

I am working on some new pictures for everyone to view. Be patient..

Love
Laura

Thursday, May 30, 2002 at 02:26 PM (CDT)

Day +76

My first praising entry today will be to God. He has blessed our son with remarkable strength and healing. As so many of our JMML families have encountered complications with the process of BMT, Colby has sailed above the monsterous sharks that lerk just below the waters. My biggest fear is facing everyday wondering when he will develop something that could set his progress backwards. He has done amazingly well throught out the BMT process an we are forever greatful. As I read about the other children who are battling against JMML, I find myself in a puddle of tears and heartache for what these children at such a tender age and the parents must encounter on a day to day basis. Our thoughts and prayers are with you all. May God continue to give you strength and courage through out your journey.

Update since our last clinic visit.

Colby was the beginning line up at our New Salem Memorial Day Parade. He rode in the first firetruck of the parade (with permission of course). As Jack and myself looked at the poster Tammie, Timmy and Taylor made for the front of the firetruck our eyes overflowed with tears. It read "OUR LITTLE HERO COLBY COLE". It means so much to us that our son is so loved. He even received a real heavy duty fire hat. His comment was "why didn't they make it a little smaller because I'm just a little boy". He has really enjoyed playing with it and we are very honored to be a part of the event. Guess who was there to support her man---Mackenzie. Colby was thrilled to see her and play a game of dodging pine cones. Thanks Scott for being such a good target and a good sport. It was wonderful to see them playing together. He really misses his playmates. He often mentions the daycare. He says "when I get better, I'm going back to school and play with my friends--you know they probably are wondering where I have been". I am looking forward to a get together with all of the children once Colby is out of the danger zone. I really miss all their hugs and kisses. But we can't take any chances with the variety of little bugs that they also carry. We love and miss you all. Mackenzie was our first child when we opened Pandacare daycare four years ago, and now she is off to kindergarden.

Clinic day was Wednesday this week. The boys and I were in and out fairly quickly. We were on the road at 7:00am to Pittsburgh and on our way home at 11:00am. This is a record!!! Having both boys in a tiny room seems to make our visits shorter. Imagine that. Dr Goyal said that everyone knows when we are there. We stir up the clinic. Oh well, boys will be boys.
counts
-hemoglobin 9.5
-platelets 123,000
-white count 3.2
-ANC 2200
-cyclosporine level 312 still high
We were expecting the cyclo level to be still elevated even with the decrease in dosage to 70mg twice a day. His kidney function test kind of gave it away. They are still elevated but haven't gotten any worse. His magnesium level continues to drop slowly. Adding supplemental magnesium was discussed but not yet necessary. His threshold for seizures decreases with lower levels of magnesium. They are on top of all his labs. He will receive IVIG next clinic visit which is Wednesday. I did ask Grandma and Happy to keep Cameron next week because the IVIG infuses over 2-3hrs. I do find it difficult to keep Cameron entertained for such a long period of time.
Colby has been doing great for all he has been through. He has good days and not so good days. His energy level varies and his mood and temper are irratic. I will be glad to wean him off of some of his medications in the next few months.

Jack has been working so hard trying to catch up at the shop. This is the AWNING season. He has prepared the swimming pool for the boys and I to enjoy. We have been in almost everyday. The weather has been beautiful here in PA. Yes, we have permission to swim in our private pool. I have stock in sun block now. The heat/sun appear to have some affect on Colby's appetite and fluid intake. He needs alot of encouragement to maintain his requirements. Questionalble nausea due to his enhanced sense of smell. He never complains.

The boys and I are preparing for Jack's birthday and Father's Day. His birthday is June 4. The boys are going to bake a cake since Colby is still on his diet restrictions. Colby wants to decorate the entire house with party items.

WE LOVE YOU DADDY

I will update next week. It feels good to say that. Until then please continue to pray for our friends going through hardships. Your support has been much appreciated and we love you all.

Laura

Friday, May 24, 2002 at 02:49 PM (CDT)

DAY +70

WOW!!!! I can't believe it is only 30 days until Colby's greatest milestone. The big DAY +100. The time when his restrictions begin to unfold. There will still be many restrictions but a little taste of freedom will be much welcomed. As long as he is on immunosuppressive medication he will be somewhat sheltered. I am hoping we can start weaning his medications around that time as long as he doesn't encounter any signs of GVHD (graft vs host disease).

Yesterday was clinic day and his counts still holding:
-hemoglobin 10.8
-platelets 154,00
-white count 3.5
-ANC 2200
-cyclosporine level 303 (still high)
As you may have guessed Colby was dancing and singing again when he didn't have to take his cyclosporine yesterday. He reminded me today when it was time to take his nasty medicine. He has been taking his medicine like a real soldier. What a blessing. His kidney functions are still elevated and we are hoping once his cyclosporine level comes down so will they. He never stops amazing me. He basically knows the rules and reminds every one about his restrictions. He is pretty smart for his age. Sometimes it is as though I am talking to an adult instead of a child. He has surpassed his pre-transplant weight of 15kg. He is now 15.3kg(33.6 pounds). He is starting to fill out and regain some of his muscle mass. He looks wonderful. He is halarious when he always wants us to feel his "hard as a rock" biceps. And of course Cameron is right behind him showing off his muscles too.

We finally met Patty and Michael. He is a four-year old boy that was diagnosed with Wilm's tumor. He has gone through treatment and so far things are looking great. We will continue to pray for him and his family. God has placed his healing hand on many of his beautiful children. We are so blessed.

Congratulations to Zachary Doctor-- May 23rd was one year since his diagnoses of JMML and he has been in remission. We are so proud of him and his family. His mother Dana has guided us through our battle with JMML and we are so thankful that my husbands secretary found her on the internet.

A special thank you to all of the people who helped with the blood drive in Colby's honor held May 23, 2002. We sincerely appreciate everyone coming to show their support.

Love and prayers

Laura

Wednesday, May 22, 2002 at 12:11 PM (CDT)

DAY +68

Hello to all,

The days are really blending together. Here it is Wednesday and I am just updating from Mondays clinic visit. Well here it is:
counts
-hemoglobin 10.5
-platelets 167,000
-white count 3.4
-ANC 2400
-cyclosporine level still high 345
The good news is that Colby was singing and dancing again because he didn't have to take his cyclosporine Monday night and his dose was decreased to 0.7ml twice a day. The not so good news is that his kidneys are taking a beating trying to clear the high level of cyclosporine.

His blood tying has been showing A+ cells which is fantastic because this is the donors blood type. The doctors said his blood type would change in 1-3months. This is a great finding but on the other hand he may need to transfused more often because there will be some destruction of red cells due to the difference in typing. Colby has been doing well dispite the changes going on inside his body. He is soooo tough. What a soldier he has become. He knows exactly what each of his medications are and what they are used for. He even catches me at times with his diet restrictions. This is a hell of alot for a four year old to go through but he never stops amazing us with his knowledge and cooperation. He has gotten much better at taking all of his medications and even with the activity restrictions. Since his cis-retinoic acid was started his lips are getting very chapped but so far no complaints of mouth soreness or eye discomfort which he had when he was taking it before BMT.

We will return to clinic Thurday so they can recheck his labs and cyclosporine level. This should be an interesting visit since I work tonight and will be driving 1 1/2 hrs to get there. It reminds me of the days before BMT. I have tried to adjust my work schedule to accomadate the doctor visits but sometimes things just don't work out that way. Cameron will stay with Marge tomorrow until we return home. Carmel, Grandma, General Elaine and the members of our church will be helping with the blood drive that is being held tomorrow in honor of Colby.

We were very greatful when we received a check from Ken Swanson yesterday. Mary Halbrook organized a ticket sell and his company matched the profit made from the ticket. Many thanks to all the people who helped by selling and buying the tickets. Times are tough even with Jack and I working. The added expenses are really adding up. I can't thank General Elaine enough for all her emotional and financial support. She continues to amaze me with all her ideas and support to our family. She has a special party planned for Colby's DAY +100 celebration. She never stops. We have been blessed to have such wonderful and giving people in our lives.

Forever greatful
Laura

Sunday, May 19, 2002 at 02:21 PM (CDT)

DAY +65

Well hello out there!! Boy, the days are really starting to blend together since I have returned to work. I suppose it is working the night shift that has me all mix up. Here it is Sunday already. I do have a few updates since our clinic visit.

Colby had labs drawn Thursday 5/16 then follow up labs Friday 5/17.
-hemoglobin low at 7.4
-platelets 163,000
-white count 3.6
Fridays counts not any better so he received a blood transfusion at CHP Fiday night. We returned home around 2:00am Saturday morning. We did not go to 8north this time because there were no beds available. They will have a busy summer with a handful of new BMT's. We did stop for a visit and get a couple of movies for our short stay on 8south. Today was Matt's transplant day and the girls said he is doing great. It was very late and I didn't want to disturb their much needed rest.
We return to clinic tomorrow--Monday. I do work Monday night so I may not get a chance to update until Tuesday.

Happy Birthday Grandma Cole. We are so blessed to have you with us.

Love
Laura

Tuesday, May 14, 2002 at 12:22 AM (CDT)

DAY + 60

Hello to all

Clinic day with the boys. They actually were very well behaved--wait a minute, did I say behaved? I thought for sure it was going to be a long visit. Colby looked so pale. Counts are improving

TODAY >>>>>>>>>>>>>> FRIDAY 5/10
-hemoglobin 8.2 ------------- 7.3
-platelets 168,000 ---------- 123,000
-white count 3.7 -------------2.9
-ANC 2700 ------------------1653
-cyclosporine 385----------- 394 on 5/11
We were unaware of the high cyclosporin levels until today. They like it to be less than 300. Colby was estatic when Tammy told him not to take his cyclosporine today. He has been singing and dancing ever since "I don't have to take my nasty medicine HA HA HA". One less battle today. Colby still continues on his Ancef IV for the positive blood culture he had drawn in the ER 5/6/02. All other cultures have been without any growth. His appetite is improving and he is drinking like a fish. He has done well since the TPN was discontinued. He will resume his cis-retinoic acid 60mg daily as he did prior to BMT. It will continue for one year post BMT. We are unsure of our return visit to clinic at this time. It will depend on the need for labs and the administration of Pentamidine(instead of bactrim).

I will return to work Wednesday night if all goes well. I am excited to get back into the groove. I will really miss tucking the boys into bed everynight(that means you to Jack).

Thank you all for your continued support and prayers. This is a long road and we couldn't have made it to this point without YOU.

Love and prayers

Laura

Friday, May 10, 2002 at 09:40 PM (CDT)

DAY +56

Great news--we will go home tomorrow. Yipie!! Cameron was very excited to hear the news. Colby, on the other hand wasn't thrilled. He loves it here on 8north.

Colby's antibiotic was changed to Ancef. The organism that is growing in his blood is sensitive to this drug. He received his first dose this evening and tolerated it well. It will be given IV every 8hrs around the clock. The infusion will only last 1/2hr. His last dose will be Tuesday. Tonight is the first night off of TPN. I hope all goes well. He has been receiving TPN for two months now. His counts are a little low but it is expected because of the infection. We will return to clinic on Monday.

CONGRATS to Mackenzie (Colby's "girlfriend"). She aced her pre-kindergarden testing. She chatted with Colby last evening. She was the only person he would talk to on the phone.

We will update from home.

HOME SWEET HOME

Laura

Thursday, May 09, 2002 at 02:57 PM (CDT)

DAY +55

Hello everyone,
Here on 8north. It was nice to see all the girls again. Colby doesn't know it yet, but Jamie is here now. He is taking his nap.

Not much new to report. Blood cultures are still positive. He must have 48hrs of negative blood cultures before discharge. His fortaz will be discontinued and he will continue on Vancomycin until the cultures show a drug sensitivity.

He is playing and being his silly self. You wouldn't even know he was sick. Dr Tersak is seeing him this week. She is in for a real treat. She hasn't had the pleasure of pure torture from the Colby meister up until this admission. Poor doctor. It is a good thing Tammy makes rounds with her to warn her of the unexpected surprises Colby has up his sleeves. Just kidding, He really is a wonderful child and I am sooo proud of him for being so strong. General Elaine says "STRONG LIKE BULL".

Colby's TPN will be tapered to 6hrs tonight. Our goal is to wean him off this admission. He has been eating 3/4 of his normal and drinking has been great. Of course, alot depends on his kidney functions which have been good.

Many thanks to Gayle for cleaning the playroom each evening before she leaves. Colby really enjoys hanging out there. Besides, it is the only place we are permitted to go other than his room and the 8north hall.

Cameron is having a wonderful day with Marge. He would barely even talk to me on the phone today. We are so blessed to have such wonderful people in our lives.

Matt is next door preparing for his transplant next week. We will keep him and his family very high on our prayer list. Maybe Colby will bring him good luck through the walls. Hang in there Noelle.

We are in room 8629. Phone number is 412-692-8692 if anyone would like to call.

Love to all

Laura

Wednesday, May 08, 2002 at 09:16 AM (CDT)

DAY +54

Good morning to all,
Just a quick note to let everyone know that Colby will be admitted to 8north today for a course of IV antibiotics. The blood cultures drawn Monday night in the ER are growing gram+ cocci(blood infection). I will update from the hospital once we get settled in and have a better idea what we are dealing with. Please say extra prayers that this can be treated without insult to the fragile bone marrow. Cameron will stay with Grandma and Happy and tomorrow with Marge. Thanks for all your help with Cameron and for always being there. We love you!!!!!

We love you DADDY and we will be back home soon.

Love

Laura

Tuesday, May 07, 2002 at 11:00 PM (CDT)

DAY + 53

Hello to all,
Monday was a very busy day for the Cole family. On the road to the clinic at 7:00am. Spent the day hanging out with Nurse Anne and Tammy. We did get to watch E.T. during Colby's IVIG infusion(immunoglobin-to boost his immunity). It usually takes 3-4hrs to infuse. Many thanks to Marge, Grandma and Happy for entertaining Cameron while we were in Pittsburgh. Colby has been running a low grade temperature 99-100 fahrenheit the past couple of days; so Monday was no different. His temp even went up to 101.6F during his infusion of IVIG. No other symptoms to warrant "panic". We would just watch him. His eating & drinking has been impressive. He does gets some waves of nausea here and there but not vomiting very often. His TPN will continue for a little while longer.
counts
-hemoglobin 8.8
-platelets 161,000
-white count 5.7
-ANC 4500
-cyclosporine level 263
all other labs looked pretty good
-weight now up to pre-transplant weight 15.1kg

As you all know, Monday was my first night back to work since March 2, 2002. What do you think happened???????? Yes, you are absolutely correct. Colby's temperature spiked to 101.6F again. Dr Orlando was covering for the hemo/onc group and we were on our way to CHP at 10:00pm. I thought for sure this would be an admission to 8North. Things went well in the ER and after reveiwing labs and a dose of Rocephin IV (antibiotic) we were on our way home. Colby was excited and he wanted to surprise his daddy when we got home. He crawled up and snuggled Jack like a spoon. It was beautiful. Thanks to the Uniontown ICU staff for covering for me. I hope this doesn't become a habit. I will try again Wednesday.

Today Colby still wasn't quite himself, but he did play a little more until evening. His temp has been riding around 99-100F most of the day. Let's keep our fingers crossed this will be something that will pass soon. I will touch base with his doctors tomorrow.

Everyone who sees Jack tomorrow must congratulate him on a fantastic job at preparing and administering Colby's TPN tonight. I was very impressed but not surprised. I knew he could do it. Babe, you were super duper!!!!!

Our deepest sympathy to Dana Velosky and her family on the loss of her husband at the age of 54 on May 2,2002. His battle with cancer was complicated by pneumonia and unexpectedly took his life. He will be deeply missed here on earth but warmly welcomed as an Angel in heaven.

Thank for your continued emotional and spiritual support--You all have been wonderful.

Laura

Thursday, May 02, 2002 at 11:11 PM (CDT)

DAY +48

Hello to all,
Another GREAT day at the clinic. We actually don't have anything to report other than the counts--
-hemoglobin 10.2
-platelets 194,000
-white count 6.6
-ANC 5100
-cyclosporine level 359
Plan is to continue on TPN and return Monday for a long stay at the clinic. Colby will receive his monthly dose of IVIG(to boost his immunity). He has been doing well. His appetite hasn't taken off quite yet so he has been losing weight. On the other hand, he hasn't been vomiting either. He continues to take his cyclosporine dispite it's "NASTY" taste. His only request is to give it to him when he is sleeping then he doesn't remember the taste. Don't panic!!! I do wake him and he is in an upright position when he takes it. He has been going to sleep early 9:00-9:30pm. Colby's little cell making factory is wearing him out. Poor Jack has not been able to see him awake much of the past few days. He has been extremely busy at work to say the least. We all miss him very much this time of the year.<< WE LOVE & MISS YOU DADDY >>

It is so funny to see Colby with very dark eyebrows. His eyelashes are really starting to fill in too. As far as the head--well, Jack still has more hair.

I did update the photos-please take a look. I am terrible with this computer!!!!! I never can get it right. It takes me hours to place one picture. Oh well, everyone is snuggled in bed anyways.

LOVE & PRAYER

Laura

Monday, April 29, 2002 at 10:03 PM (CDT)

DAY +45

Well, another great day at the clinic folks. GO CELLS GO!!!!! We are very pleased with Colby's progress and his "donors" bone marrow. I must say, we have been blessed by the Power of God Almighty for having such a glorious child. Through everything this child has been through, he continues to fly like an ANGEL.
counts today
-hemoglobin 10.6 <<<<
-platelets 186,000 <<<< all climbing
-white count 4.2 <<<<<
-ANC 3000 <<<<<
-cyclosporine level pending......
Plan is to continue TPN and return on Thursday. Saturday morning Colby's uvula(soft structure that hangs down in the back of your throat) was swollen and inflammed. By midmorning the swelling had gone down but the tip was still red. I wouldn't have even realized it but Colby said "there is something in my throat and I can't swollow it". He didn't have any difficulty swolling solids or fluid and hasn't complained of it since. This was freaky. No other viral symptoms and unexplained by the physcians. We will keep a close watch. His appetite is still fair but he is asking for foods and he even made himself lunch one day with supervision of course.

Saturday he spent the day with cousin BJ and had a wonderful time playing. I guess Cameron gets boring after a while since he copies everything Colby does. Cameron was the little tag-a-long trying to be a big guy. It was really funny to watch them interact. Colby and BJ were trying to come up with a logical approach for BJ to stay to play and to skip church Sunday. But Aunt Lynda won the debate. We moms have to be the bad guys.

Elaine (the General of Colby's Army) and her husband Larry came for a visit Sunday. Or should I say Barney, Spiderman, and the Power Rangers came and brought Elaine and Larry. The toys out numbered our guest. Colby dressed up in the Spiderman costume and was spinning his webs. If he could have, he would have slept in it but his IV needed to be hooked up. Cameron on the other hand was surrounded by Barney dolls. Elaine, you should have seen Cameron in bed with all his Barneys lined up and he had his arm around all of them and of course he had Mr Bear too which he uses as a pillow. He played with them for an hour before he fell asleep. Thank you so much!!! You all are GREAT.

I am attempting to schedule myself for work next week. Keep your fingers crossed that all goes well until then. Okay Jack, it is your turn to be the "TPN KING". If any of my nurse friends would like to be "on call" while I work, I am sure Jack would be greatful. Just kidding, he will be great. Remember he is "THE MAN". He has become quite the medical personnel since Colby's battle against cancer. I am so proud of him. I love you babe!!!!

Many prayers are needed for our JMML families. They have a very difficult journey with a lot of extra baggage(complications). My heart breaks when I read the updates on their journals. You can hear their cries and only imagine the pain they are going through. Although the treatment plan is the same, each child with JMML reacts differently. It brings some comfort to these parents when people show their support by signing the guestbook on their websites. It is hard to know what to say but a simple message is better than none. Caringbridge website has made it possible for us to keep every one posted on Colby's progress. We thank every one for signing our guestbook and we look forward to reading it everyday. When Colby learns to read, he will see all the love and support that pulled him and his family through the battle against Leukemia. He will see all the GOOD that is in the world and learn a very valuable lesson. The lesson is: To beleive in the power of prayer,faith and people.

Love and prayers

Laura

Friday, April 26, 2002 at 09:08 PM (CDT)

DAY +42

Well I will give you one clue------ I am signing in from home. YEAH!!!!!! No admission to 8 north. Colby's moto is "when the going gets tough--the tough get going". He really proved that today. After the past few days,I even felt like he was sure headed for a visit to 8 north. I was elated when he woke up jumping around on the bed. His clinic visit was great!! He received IV fluids while we waited for his labs. He even told me he was "hungry". Thank goodness for that snack bag. Dr Goyal and Tammy were pleased he wasn't the same little boy they saw yesterday. Actually, I think they were in misbelief for a while. But Colby brought them to reality when he started acting like his silly self. Colby never seems to stop amazing us with his power of healing.
counts:
-hemoglobin 10.4
-platelets 158,000 >>>>>>>>>all great
-white count 4.0
-ANC 2700
-cyclosporine level from yesterday--284 which is within the acceptable range

Colby needless to say was out the door before they had a chance to change their mind. We will return on Monday.
The ride home was beautiful--just because we didn't have to be separated again. I realize there will be another admission down the road, but we are not quite healed up from the last departure. Thank you all for your extra prayers and many thanks to Dana (Zachary's mom) for all her support and and knowledge. She is truely the MOTHER of JMML.
We spent the evening playing hide and seek with Aunt Lynda and BJ. The boys had a hard time leaving as they always do. A fantastic beef stew dinner from Grandma Mae topped the ending to a wonderful day.

*******NO VOMITING TODAY******
Love to all
We are still home

Laura

Thursday, April 25, 2002 at 10:41 PM (CDT)

DAY +41

Hello everyone,
Since Monday we have been very busy. Colby seems to have done too well so now he is testing the skillfulness of the medical staff. He has been kind of sluggish around the house. His extent of play time has decreased and he has been displaying some signs of nausea. When you ask him how he is feeling, he states "Good,I'm not sick, I'm just a little cranky". His temperment has been rather short lately. He hasn't quite been himself since last Thursday. His weight dropped 1 1/2pounds since Monday and his food and fluid intake have taken a dive. His TPN(IV nutrition) was increased to 10hrs and zantac (medicine for his stomach) was added since he wouldn't take it by mouth. Dispite the actions above, he continues to vomit. Today he vomited three times.

Counts today were:
-hemoglobin 10.6 (transfused on Monday)
-platelets 187,000 (with out transfusion so he is producing platelets)
-white count 6.4 (with the help of neupogen given on Monday)
-ANC 4,400
-cyclosporin level still pending
He did receive his first dose of Pentamidine IV in clinic today and some IV fluid.
The plan is to return to clinic tomorrow(Friday) and receive IV fluids. They are uncertain what is causing GI distress and will re-evaluate him. This could mean an admission to 8 north (I will pack a bag just in case). It may be gastritis or exacerbation of GVHD(graft verses host disease). We would rather error on the side of caution than to deal with a bigger problem later. Please don't be alarmed. Colby is a determined little boy and he will continue to fight what ever is thrown his way.

The Dance-A-Thon held Wednesday at the Cub's Den and Duck Hollow turned out very well. I finally got a chance to meet Todd(Colby's Make A Wish volunteer) and Rebecca (the owner of Duck Hollow Learning Center). They are wonderful people. It was great to see all the children enjoying themselves outside dancing. It was a pleasure as always to see Suzanne and Callahan. Alot of hard work and planning made this such a wonderful event. Our thanks to the Parents and Children for collecting donations. These donations will go toward Colby's "Make A Wish". A special thank you to those who have donated. Thanks to the sponsors for the T-shirts. They were really unique. Although Colby could not be there, a video will show the support of the children and of course Cookie Monster. Thanks to all, you all are super.

To the girls in the ICU at Uniontown Hospital: My return to work will depend on tomorrows outcome. I really miss you all.

Prayers continue each day

Laura

Monday, April 22, 2002 at 11:01 PM (CDT)

DAY + 38

I know you all have been patiently waiting for results from the bone marrow biopsy. Well here it is----once upon a time in Colby land there was a very special bone marrow donor. We don't know her name nor have we had a chance to meet her yet; but she provided a miracle in the Cole family's life. The miracle of a second chance of life!!! Yes, the cells from "her" have made a new home in Colby's bone marrow cavity. It was such a relief to hear the words "100% donor cells". Thanks be to God and all of YOU for your prayers and healings. May God watch over the donor and keep her safe so we may express our gratitude when the time comes to meet her(in one year). This is a milestone in Colby's life. At the tender age of four, he has been through so much. Jack and I have been blessed with a glorious child of God. He is our little "Earth Angel". The days ahead will still be faced with concerns, but we pray they are what every parent faces--you know--his first day of kindergarden, the fear of driving, leaving home and going to college, getting married and having a family of his own one day, etc.

Thanks to Grandma for her support on our extremely long clinic day. We started at 7:45am and returned home at 7:00pm. As you can imagine, entertaining a two and four year old in a small room for 7 1/2hrs wasn't easy. Colby's counts were as follows:
-hemoglobin 7.6 (he did receive a PRBC transfusion---first time since 4/7/02 (15 days)
-platelets 129,000 GREAT
-white count 1.9 (he received IV neupogen to boost his white count)
-ANC 900
-cyclosporin level 146 (low)--somewhat of a surprise since he has been taking his "power drink".

The plan is to stop the bactrim for a month or so and give him a drug called Pentamidine, which he will receive IV every three weeks instead. The rational is that bactrim may be surpressing the bone marrow production. We will see in the next few weeks. His TPN (IV nutrition) will continue for awhile. He hasn't been drinking or eating enough at this point. As much as I have enjoyed spending time off with my children, I really need to get back to work for a break. The days will be rather busy mixing and dispensing medication, doing catheter care, drawing blood work, clinic visits, spending quality time with the children and then going to work for 12hrs; but I am looking forward to getting back to some sort of normal life style. Jack will now become the "TPN KING" since Colby is receiving the TPN at night. JACK is a fast learner so I will give him a crash course soon. He will do just fine because he is the MAN.

Our next clinic day will be April 25th. So I will update then. Our love to all.

Oh, I can't forget to thank you all for your prayers for baby Parker. He is now off the ventilator and starting to be fed from a bottle. Isn't that wonderful. This has been a very difficult time for his mommy and daddy and we are looking forward to his speedy recovery and a chance to go home. We love you Todd and Meg for being so strong. I can't wait to meet the little guy.

A special thanks to Uncle Mark for a wonderful visit this weekend. He spoiled the boys with a car load of gifts. He even spoiled Jack and I with a home cooked meal. It was fabulous!! We enjoyed having him.

Love, prayer and a heartfilled thanks to all for your continued support.

Laura

Thursday, April 18, 2002 at 06:27 AM (CDT)

DAY +34

I know the suspense is killing those of you who view the journal frequently. Well here it is----Clinic day----
-hemoglobin 8.9 (holding his own)
-platelets 124 WOW!!! doubled from Monday
-white count 2.2 (still doing good)
-ANC 1100
-cyclosporin level 169 (little low)
The most important new is that Colby's bone marrow cells look NORMAL on the slides. The cytogenics(determines whose cells) results won't be in for a week. Believe me, you will know when I get the results. You will have to wear ear plugs to read the journal. It is sometimes hard to restrict activities etc. when Colby is requesting to do things that he enjoys. But we must remember his bone marrow is very fragile and any insult could set him back.

Colby continues on his TPN (IV nutrition). The weaning is now in process. It will be decreased to 8hrs/daily. It will need some fine adjustment with the ingredients but labs look pretty good. His liver functions and kidney status are holding up to all those toxic drugs he is receiving. He is so strong for a four year old.

We did stop and visit the staff on 8 North. Boy, do we miss them. They are like family. We chatted about the first day we were admitted for transplant and how we looked like the Beverly Hillbillies. Every one was glad to see Colby doing so well.

Guess what?? We may be able to skip our clinic visit Friday. I will know later in the day when Tammy calls.

Love to all

Laura

Monday, April 15, 2002 at 10:32 PM (CDT)

Day +31

Hello everyone,
Being in the hospital all day made me realize how lucky we are to be home. We were on the road a 8:45am for our same day surgery experience. Colby did have some difficulty with the waiting (I think it was worse for me). His procedure was scheduled for 11:00am and he didn't go to the OR until 2:55pm. Thank goodness there was an open room or it could have been longer. Colby just kept saying "I'm hungry, my belly wants some spaghetti, macaroni and cheese, hotdog and some bread". Needless to say, it was a very long day. It was wonderful to see the girls--Gayle and Karen from 8 north. A sight for sore eyes. I guess we got a little spoiled by their fabulous care. We love you all. Thanks for listening to me vent.

His counts were
-hemoglobin 9.4
-platelets 67,000 ( we were quite surprised with this result--we expected them to be lower) He did receive platelet transfusion just because of the procedures
-white count 2.4
I was unable to get his ANC because the differential wasn't recorded at that time
-cyclosporin level a little low 180 but no change in dosage--they will recheck on Wednesday

Colby's right chest broviac was removed by Dr Kane. He was the surgeon who placed his newest(left side) broviac on March 6th. His bone marrow was done by Laura and Dr Corey. We won't know anything until Wednesday's clinic day. Everything went well as expected. He woke up in the recovery room crying for his mommy. Penny, his nurse comforted him until I could be with him. Thank you Penny for consoling him. He was eating a popsicle and sobbing. Everything went well there too. We were actually discharged from the recovery room and didn't have to go to same day area. We couldn't leave without stopping to see Gina.

Thank you Grandma and Happy for entertaining Cameron or vice versa. He was a little unsure about us leaving this am. He repeatedly said "you coming back home mommy". He was reassured and then he would say with excitement "Mommy take Colby to hospital and come back home--Yeah". Poor kiddie, he has been threw alot for a 2 yr old. He was ever so happy when he saw the van pulling in the driveway. I could hear him yelling "my mommy home".

We continue to pray for our friends who are fighting for their lives with illness. A special prayer for little Parker--the weaning from the ventilator has been complicated by an infection. Please add him and his mommy and daddy to your prayers and for God to give them the strength needed to travel this roller coaster toward their healing.

I must add that Cameron is starting to recite Colby's healing prayer. He does everything Colby does and even some things that we don't really approve of.

Colby did attend church Sunday(all precautions taken). He requested to say his healing prayer in front of the congregation. He did beautifully. We were so proud of him. Well, I guess we could say he did a fantastic job for his first time ever speaking in front of a group of people. The Lord must have given him strength to be so brave.

Many thanks for your continued support and prayers.

Laura

Saturday, April 13, 2002 at 09:53 AM (CDT)

DAY +29

Sorry I didn't update yesterday but we had a late evening. Our clinic visit went well.
-hemoglobin 10.4
-platelets 57,000
-white count 2.1
-ANC 700
-cyclosporin level 296
With the above results Colby received an IV dose of neupogen to boost his white count and ANC. His cyclosporin dose was decreased to 0.8ml. The "Power Drink" is working beautifully. I have to give Cameron most of the credit for Colby doing so well with his medicine. He has been my little cheerleader. He claps and jumps up and down then tells Colby " I'm so proud of you." Aunt Lee joined us on our adventure to the clinic and she even offered to go again. I think she will require some rest before the next time. We had a great day. The boys kept us hopping as usual. They have so much energy. Lee and I were told to stop talking a few times. Once we returned home around 3:00pm, the boys demanded that Aunt Lee take a ride with them on the quads. We had a wonderful ride. The boys really enjoyed their time with Aunt Lee. Thanks Lee.

The evening ended with a visit from Mary, Rich, Caileigh, and Richie. The children had a blast playing. Colby couldn't hang and feel asleep around 11:00pm on Jack's lap. Cameron was so tired that he didn't even move once I started to rub his back. It is so nice to be home and have our friends visit us again. It feels so good to to tuck the children into their beds again. And last be not least, I have enjoyed sleeping with my husband in our own bed. All the little things we take for granted everyday have become the most important to me now.

Colby will be going to the operating room on Monday to have his broviac removed and for a bone marrow apiration and biopsy. We will have preliminary results on the bone marrow Wednesday.



Love to all

Laura

Thursday, April 11, 2002 at 11:03 PM (CDT)

DAY +27

Hi,
I couldn't wait until tomorrow to add to the journal. Colby didn't ______________________did you guess it yet? Yes, he did not vomit today. YEAH!!!!! This makes my heart and soul so happy. He even took his cyclosporin with less difficulty. I think he is testing me. THANK YOU VIRGINIA. You found the perfect mixture for hiding some of the taste of the cyclosporin. If anyone else is interested---chocolate milk at room temperature then add the cyclosporin. It worked like a charm. This is now his "nutrient power drink" that he takes twice a day. SHUSH everyone--Colby doesn't know his power drink has his cyclosporin mix in it.

The boys spent the day outside. It was beautiful. Marge has been terrific with the boys and a really big help around the house while we are getting adjusted to all the changes. We love having her with us on Tuesdays and Thursdays.

Aunt Lynda and cousin BJ entertained and wore the boys out this evening with their game of chase. So much energy bundled up in those little bodies. Thanks for dinner too.

Love to all
Laura

Wednesday, April 10, 2002 at 08:31 PM (CDT)

DAY + 26

Hello everyone,
Our day started at 8:30am when we were on the road to the clinic. It really felt strange driving to the clinic again. What a beautiful day. The boys really enjoyed the ride. They stayed awake the entire trip. Cameron was really thrilled that he didn't have to stay behind this time.

This time we entered the back door. The boys were asking "where is the playroom?". All in all, it was an uneventful visit. A few new nintendo games provided entertainment for Colby while food preoccupied Cameron. The normal routine of vitals and then lab draws. It was wonderful to see Nurse Anne and she of course was welcomed with a big hug.
Counts are:
-hemoglobin 10.6
-platelets 69,000
-white count 2.5 (we knew it would drop once the neupogen was stopped)
-ANC 1050
I was very pleased with the results. No transfusions today.

The plan is to return on Friday to determine lab values and then to repeat labs on Sunday in preparation for Monday. He will have his bone marrow aspiration and biopsy to determine just whose cells are growing. At this time he will also have his oldest broviac removed. They usually do the bone marrow aspiration on day +28 which would be Friday, but they will need to send a sample of bone marrow to Dr Castleberry in Alabama who is doing research on JMML.

Colby and Cameron are having a great time together. I was sure there would be a lot of difficulty with sharing again but they have really impressed me with the love they have been displaying. It has been wonderful to be home. Many thanks to Marge for her help with the boys.

Colby is eating better at home. Still having difficulty with the most important medication--cyclosporin. We keep trying. His cyclosporin blood level was not to bad today--therapeutic range 250-300. His was 206. I was concerned because we were uncertain of how much he was actually getting with all the vomiting.

We continue to thank all of you for your support and prayer.

Laura

Monday, April 08, 2002 at 10:13 PM (CDT)

DAY +24

WE ARE HOME__WE ARE HOME__WE ARE HOME__ WE ARE HOME oh I'm sorry, I got carrried away.

After staying up until 1:30am, Colby woke up fit as a fiddle. He did miss the Power Rangers because he didn't get up until 8:30am. Counts are great
-hemoglobin 9.5
-platelets 47,000
-white count 4.6
-ANC 3450
He received a platelet transfusion this am to prepare him for the operating room to have his broviac removed. He was taken to the special treatment room only to return with two broviacs. They decided to remove the broviac under general anesthesia. So we waited until we couldn't wait any longer. Colby had been NPO(nothing by mouth) since midnight. We were an add on and this means we could have been waiting until 10:00pm or later. Colby was doing so well until around 2:00pm when he started crying he was hungry. The words we have been waiting for so long only to tell him sorry Colby you have to wait until the procedure is over. After a short time Jack couldn't stand it any longer. He voiced his concern and we were soon discharged. It did seem foolish to deprive a child of food when we have been forcing him to take only a few bites. We are now unsure of when the broviac will come out. We will have a better idea on Wednesday when we go to clinic. Thank you Karen for understanding and being so cooperative. You have been a terrific nurse. And a true patient advocate. You and your co-workers should be very proud. It is comforting to know the patient comes first on 8 North. There are so many people to thank. Under the circumstances, we had a great experience at CHP and we admire you all for such quality care. I know Colby, Jack, and myself will never forget your kindness. WE LOVE YOU ALL. I hope we only come back for visits. But it is nice to know you all care so much about us.

We were on the road at 3:30pm (not soon enough for Colby). Waiting for us at home was a hugh beautiful basket of spring flowers. Thank you General Elaine. You are always so thoughtful. Colby had awaken just as we pulled in the drive and said so peacefully "We are Home". Those are such nice words. While we waited for Cameron to join us, Colby took a ride on the Harley power wheels motorcycle. He really enjoyed the outside and he commented on all the birds. As Cameron, Grandma and Happy drove up the driveway, you could see Cameron smiling from ear to ear. I received a big squeeze and he and Colby hugged one another ever so gently. Cameron's eyes lite up when he saw all of us waiting for him or maybe it was the power wheels motorcycle. He and Colby went off for a brotherly ride. They looked so darn cute riding together.

Colby did much better eating at home. He had his favorite macaroni and cheese with strawberry milk. His TPN infuses from 10:00pm-8:00am to supply the important nutrients and calories that his body requires. If all goes well, he may only need the TPN for a week or two.

Thanks to all those who have and continue to enrich our lives with their presence and support. We couldn't have done all that has been done without each of you.

I am so looking forward to seeing everyone again and look out I have bunches of hugs and kisses. We will be going to the clinic on Mon-Wed-Fri. I will update the journal following our clinic visits. Thank you all for reading the journal daily. This has been a wonderful way to communicate.

GOD BLESS and CONTINUE TO BLESS

The Cole's

Sunday, April 07, 2002 at 11:53 PM (CDT)

DAY +23

Only one more day before we are home. A trip on the road that we won't mind at all. Counts are out of this world
-hemoglobin 7.6 (received directed donor PRBC)
-platelets 19,000 (transfused with directed donors)
-white count -----------are you ready?? 9.0 that is more than doubled from yesterday
-ANC 7470
Fantastic huh? The guardian angels are back.

Jack and Colby had a great day. I knew Jack could get his spirits lifted. Colby's oral intake was terrific. Six bites of cheerios, bowl of peaches, five bites of spaghetti O's and 13 oz of fluid, not bad for a stomach that hasn't held food for a month. He only vomited twice. Both times it was associated with medication. I'd say this was a fabulous day. His TPN will run for 10 hrs over night.

He was able to go for a walk in the hall but he had to stay in the unit. In his room he teases the nurses by hiding under the bed and behind the chair. Watch out everyone. Now that he is on the loose, he even blocks the cleaning personel in the bathroom. It was wonderful to see him being Colby again. He was also visited by Make A Wish today. They are very caring people.

Well here it is 1:00am eastern time and Colby is dancing to "Feel like a woman" from Shania Twain. My favorite is "You're still the one". You have come a long way Colby and we are so very proud of you. He is so funny. He is now packing his stuff for the big discharge day. He will go to the operating room tomorrow for removal of the oldest broviac catheter. After that, we are on our way HOME.

Thank you Aunt Lynda and Barb for cleaning the house before we come home. It looks great. It is so clean, you can eat off the floors.

Cameron is really getting homesick now. He was very excited when I told him Colby was coming home. I could hear him in the background laughing and singing. He can't wait until tomorrow. He keeps telling Grandma "I want to go home now". She has the patience of a saint. We are so fortunate to have an unbelievable support system and a fabulous and loving family.

Love to all and Goodnight

Laura,Jack &Colby

Saturday April 6, 2002

DAY +22

Hi everyone
This has been a long day for Colby and myself. Counts have been halted and if you continue to read and believe in guardian angels you will see why.

-hemoglobin 7.9
-platelets 24,000
-white count stayed 4.0
-ANC 2400

It was very concerning to see that Colby's counts didn't rise. But when I received a phone call from Gina(our friend from the admitting office) it all became clear. Last night Gina was in a terrible accident. She felt herself desending into a revine. The truck was demolished. She was suspended upside down in the truck. She had to kick her way out of the drivers side window, climb up an enbankment that was like a wall grabbing onto tree roots, and then walk two miles to get help. She was so brave. The great news was, she only had a few pieces of glass in her hand. That's right--no bumps, lacerations, bruises or broken bones. She had with her a craft box she was giving to Colby and it did't even get damaged. This was truely amazing that she did not get injured. We now know why Colby's counts didn't go up. Their guardian angels "Maria and Alyssa" were very busy protecting Gina from harm. What a MIRACLE.

Colby has been vomiting through out the day. He seemed a little down today. The only thing he ate today was a few bites of cheerios. He did drink his now favorite Gatorade. The plan is to start him on some phenergan for the vomiting and add some extra fluid in the TPN so he could be IV free through out the day. No need to teach him about the subcutaneous neupogen because Dr Goyal will be stopping it once the ANC reaches 2500. So today will probably be the last dose for now.

Colby still puts up a fight with the cyclosporin(the nasty medicine). I feel so bad for him. He has become very good at stalling in order not to take it. His pleding is heartbreaking. We are still working on a solution to make it taste better.

The evening ended with a long awaited visit from Daddy. Colby was so happy to see him. It was comforting to have him with us but it didn't make medicine time any less painful. I am sure that tomorrow will be better because "the man" is here.

Would you please add our friend Bob from Monogahela to your prayer chains. He is in remission from leukemia but now is battling melanoma.

All my love to Cameron--we will be home soon sweetie.

God Bless
Laura&Jack

Friday, April 05, 2002 at 10:49 PM (CST)

DAY +21

What a wonderful day!! We are coming HOME Monday (March 8th) HOORAY--YIPPIE--WAY TO GO COLBY--CONGRATS--SUPER DUPER--FANTASTIC--AWSOME--ETC.

Counts are beautiful
-hemoglobin 8.3 (maintaining-no PRBC for 8days now)
-platelets 39,000 (nice bump from platelet transfusion yesterday)
-white count 4.0 (must have been those guardian angels Gina brought last evening)
-ANC 2440 (it feels so wonderful to type that number)
Plan is to continue TPN only 8hrs daily(12:00am-8:00am) until Colby starts to eat better. Lasix is now just as needed. We were even started on our discharge instruction for home. There will still be a lot of restrictions but we will all be TOGETHER. What a lovely word--I would like to type it again TOGETHER. Colby received a dose of IVIG (immunoglobin used to boost his immune system). He will receive this monthly for 4-6 months.

He woke up this morning asking for a drink-because he was "thirsty". I hope within the next few days he wakes up saying "I'm hungry". Keep your fingers crossed. He enjoyed his morning in the playroom. He made a craft that had a cloud on top followed by a rainbow--how appropriate. He is our pot of gold!!!!

Jamie has been our lure for the day. Colby was a little more cooperative when the reward was a game and playtime with Jamie. He took his meds and even ate 5 bites of cheerios . GO JAMIE, GO JAMIE. I told her she would have to go home with us. Colby did tell Jamie she would have to go when his girlfriend Mackenzie came. I think Jamie understood. What a card. His thing now is turning three shades of red when he is flattered. Even his head turns red. It is really cute to watch him blush.

A long awaited reunion between Colby and Mackenzie finally came this evening. Just before she came he told me "even though I didn't get a bath yet, she will still want to hug and kiss me and maybe even touch my bald head". Off to the playroom for some bonding. And of course they had to catch a few games on the computer. I absolutely love the video with all Colby's friends from daycare. Oh, and I can't forget Samson(the dog) and Ginger(the ginipig).

Well since all his lures went home, Michelle and I had a very difficult time with the cyclosporin tonight. He even started to vomit. We haven't found anything to hide that yucky taste. We will keep trying.

Cameron is with Grandma and Happy tonight after spending the day at Diane's daycare. I think Grandma is releived that we are coming home so she doesn't have to see Cameron get upset when we all leave him. This breaks her heart. Grandma and Happy, you both have been wonderful as the primary caregivers in Cameron's life over the past month and we adore you. Our thanks are endless.

Please continue to pray for Jean and Parker. And congrats to Noelle and Matt. They went home today from CHP. Enjoy your family. It seems as though the time between hospital stays is very, very short! I will continue prayer daily for everyone afflicted with cancer and for the families to remain strong and healthy during this challenging time. May God watch over and protect them for they are his children.

God Bless

Laura/Colby

Thursday, April 04, 2002 at 10:01 PM (CST)

DAY +20

Hello everyone,
Colby is doing great. Cells are growing left, right, up, down and all around.
-hemoglobin holding 8.6
-platelets 19,000--Directed donor platelets
-white count 2.6 still climbing
-ANC 1690 fantastic
The plan is to continue oral cyclosporin and add oral diflucan and acyclovir. Colby doesn't mind taking the the last two but the cyclosporin really taste nasty. Tommorow Colby will practice giving an orange an injection to prepare him for his subcutaneous neupogen(helps stimulate white blood cell production which is needed to fight infection). He will receive a daily injection. I'm not quite so sure how he will respond to that. We will get a better picture at day +28 about his engraftment and just whose cells are being produced.
We hope and pray they are the donors and not Colby's.

Colby's spirits are great! His energy level is unbeleivable. He is really testing my energy level. The TPN will be on for only 12hrs now 8pm-8am. I really hope this will stimulate his appetite. There is a chance he may go home on TPN for awhile. He did drink better today. I was very proud of him.

We spent the evening in the playroom thanks to Gayle for wiping it down before she left. Colby of course didn't want to leave but his bladder took over and made the decision for him.

He has been vomiting again. It seems to be associated with his increased activity. When he runs, he starts coughing and up it comes. I guess all those days of vomiting continuously has taken it's toll on his stomach and we knew the radiation and chemo would leave some lasting reminders.

We spent the rest of the evening cuddling in his bed watching TV. He looks so peaceful when he is sleeping. That is the only time he will let me rub his fuzzy head.

Thanks Gina for bringing the Alyssa and Maria Guardian Angel dolls. They look great next to the Jesus that Aunt Mar made. Everytime he gets something dealing with religion, his health improves even more.

Looking forward to coming home soon

Laura

Wednesday, April 03, 2002 at 10:51 PM (CST)

DAY +19

What can I say? My little man just keeps going and going. All is well and we are getting egar to come home. Well, I am at least. Colby loves it here. The staff have spoiled him with all of their love and attention. What a great bunch of people.

Counts today are:
-hemoglobin 8.3
-platelets 32,000
-white count 1.9
-ANC 1330
I am so proud of him and his donor for being so strong. She (the donor) must be a fighter too!!!

We are still having difficulty getting Colby to eat. Jack did a much better job than I at getting his nutritional intake up. Poor Becky(nurse), it took over an hour of coxing and bribing to have him take his yucky medicine(cyclosporin) orally tonight. It wasn't on his terms this time. Sorry Colby. I still love you very, very much. I hope that tomorrow goes better. Now they will discontinue the IV cyclosporin in 6hrs.

After being so cranky yesterday, Colby told Jack "I think I am cranky because I have been here too long". What a sweetheart he can be when he is trying to charm us. He even told me tonight that there was a wolf that came inside of him and caused him to be so uncooperative with taking his medicine. Who knows--maybe he is right.

His TPN will be decreased to 16hrs tomorrow. He will be IV free from 10:00am-6:00pm. Look out 8 north--there will be a monkey on the loose. He will even go to the playroom twice. After his IV dose of lasix(diuretic) he urinates frequently and he ask me "what did they do, give me some lasix or what?" A true sign that he has been here too long. I better get him out of here before he starts giving the doctors medical advice.

Please add Jean Kuhn to your prayer chain. She has cancer and has been experiencing alot of pain. She is such a sweet and caring lady. May GOD be with her and her family during this difficult time.

Lots of love to all,

Laura/Colby

Tuesday, April 02, 2002 at 10:35 PM (CST)

DAY +18

Hello everyone,
Colby is still going strong!! His counts get better and better everyday.
-hemoglobin 9.1
-platelets 16,000 (received platelet transfusion)
-white count 1.6 ****FANTASTIC****
-ANC 1072 HURRAY FOR COLBY AND HIS DONOR
He was able to go to the playroom today--yipee!!!! He ate 6 bites of cheerios and 2 bites of fish stick today. His TPN (IV nutrition) will be weaned down to 20hrs and hope this increases his appetite. His IV medication will be changed to oral form soon and this is a definite sign that we are getting closer to going HOME. He is doing exceptionally well for all that he has been through, but I knew he would. I still stand strong when I say he will be an exception to the statistics because he is an angel here on earth. So far there have been no complications with the BMT. Thanks be to GOD for keeping him protected from all the potential complications associated with this process. My heart goes out to all of the children who suffer while they are fighting so hard to conquer the cancer battle. May God watch over them and their medical team.

We love viewing the guest sign in daily and sometimes twice a day. This gives us strength through all your encouraging words and prayer. When we are home, I hope to get in contact with all of you. I don't have the ablity to e-mail from this computer. I am thankful just to have access to a computer to update everyone on Colby's progress.

Jack and I enjoyed our evening together and he was off this morning to get back to work. Colby misses him already(me too).

I am really missing work--I thought I'd never say those words. Hello to everyone at Uniontown Hospital. We love you all. Thanks for all the cards and gifts Colby has been receiving. The staff here have been entertained daily. Colby says he has the coolest room and everyone should come and play with him.

Hugs and Kisses my dearest Cameron--mommy

Staying strong
Laura

Monday, April 01, 2002 at 10:23 PM (CST)

DAY +17

No April fool jokes today. Colby continues to do well. Counts are still good
-hemoglobin 8.5 (slight drop from 9.2)
-platelet 28,000 (bump from transfusion 3/31
-white count still climbing 1.1
-ANC 803
If counts remain this good, he will go to the playroom tomorrow. He has been in his room only since March 15th (17 days but who is counting?) A change in atmospere will do him good.

Jack was able to get him to eat four bites of spaghetti O's and pizza today. He continues to ask for particular foods. The dietary staff have been very prompt at fulfilling his request.

The plan is to discontinue antibiotics tomorrow and the IV nutrition(TPN) will be tapered down when he is eating and drinking better.

COLBY, YOU ARE OUR HERO--mom/dad

Cameron had a wonderful day with his mommy. I had a blast with him. It is so funny just watching him. He is so smart. I am amazed with the comments and sentences he comes up with. I hope this will be the last time I leave him for any lenght of time. Love you bunches Cameron.

Laura/Jack

Sunday, March 31, 2002 at 10:25 PM (CST)

DAY +16

Another terrific day!! Are you ready?
-hemoblobin 9.2
-white count 0.9
-platelets 16,000 NEEDS TRANSFUSED
-ANC 756
If Colby keeps this up we will be home in no time(1-2weeks). He is making cells left and right. Thanks to all for calling and checking up on his progress. Your hoorays are very welcome. He had a wonderful day. And I think Jack is enjoying having more hair than Colby. Don't worry Colby, your hair will be back soon.

He called me first thing this morning and told me about the "really big Easter Bunny with the really big head". He sounded so thrilled. He got a race car track from the Easter Bunny and it took all morning to put it together. His breakfast, lunch, and dinner consisted of four bites of a grilled cheese sandwich and some iced tea. I am very excited that he is even asking for food. Jack said Colby took a 3 1/2 hr nap. His cell factory must really be working hard. It is too bad Daddy didn't get a nap. He sounded exhausted on the phone. Sleep well my little men. I love you guys.

Cameron and I spent the day being buddies. We went to church this morning followed by a brief shopping trip because he was getting silly and tired. He makes me laugh so much. It has been wonderful spending time with him. Thanks Grandma for a fabulous dinner. I even ate two desserts. We even were able to fit in a visit with Aunt Lynda and Uncle Bill.

GO CELLS GO

Laura

Saturday, March 30, 2002 at 10:12 PM (CST)

DAY +15

Please sit down, take a deep breath, and you may want to cover your ears a little. I am shouting at the top of my lungs--THANKS BE TO GOD--AND ALL OF YOU WHO HAVE BEEN PRAYING SO HARD FOR MY SON COLBY.
His white count is now 0.5
platelets 36,000
hemoglobin 9.2
wait that's not all ---are you ready?
ANC 280
This year Colby will get cells for Easter instead of eggs. He did get to color paper eggs. Thanks to Gayle for coming up with all her great craft ideas. The Easter Bunny will see him first thing in the morning. He seems very excited. He also got another prize for obtaining 60 stickers.

Another uneventful night and he slept like a bug in a rug. He woke up full of energy and played a game of race cars with Dr Richie and Dr Ahuja on morning rounds. He requested tomato soup and crackers for lunch. He actually was smelling all his food--saying "hum this smells good". He only ate one bite of soup and two bites of a bologna sandwich.

Gina came for a visit and brought some cool Power Ranger stuff. One was a lion lazer which they pretended to zap all the cancer cells from his body. She is great!!

Many thanks again to all the staff here on 8 north. You have all been wonderful.

The evening ended with a special visit from Cameron, Grandma and Happy. And I can't forget the MAN (daddy). Colby was so looking forward to his time with daddy. I came home to spend some time with Cameron. It felt so heavenly to tuck him
into bed as he rubbed my face with his little hand ever so gently.

Although my family will not be physically together, we will be together in our hearts and minds. Sweet dreams to my husband and my children.

God bless to all and Happy Easter

Laura

Friday, March 29, 2002 at 09:55 PM (CST)

DAY +14

Another great day everyone!! Colby slept well last night and so did I. It was nice going to sleep before 1:00am.

Colby's counts
-hemoglobin 8.8-nice bump from transfusion yesterday
-platelets 16,000 transfusion time
-white count 0.3
I am thrilled that the white count hasn't dropped. Once the white count goes to 0.5 they will do a differential. If things keep up at this rate he will be able to get out of his room by the end of next week. He still has his cough and sniffles and the broviac site is still red but will continue to monitor for complications.

No vomiting again today. All his antiemetics are now only as needed. No more benadryl induced naps. His nap wasn't until 5:30pm. He is amazing. I wish I had some of his energy. For lunch today he requested macaroni and cheese. He ate two bites and one cheese cracker. It is a start.

He played with his buddy Jamie most of the day. Gayle and I took the back seat. He did cry for daddy a few times too. He seems very emotional and easily agitated over the past few days. He has a lot of changes going on in his little body. He has been listening to "Feel like a woman" by Shania Twain--if you remember his donor was a female.

He is displaying signs of graft-versus host disease (GVHD). The bone marrow provided by the donor(graft) attacks the tissues and organs of the host(Colby). A little is good. Theory is that GVHD may decrease the likelyhood that Colby will relapse. He is receiving cyclosporin and did receive four doses of methotrexate to decrease the severity of GVHD. It started as blothcy patches on head and advanced as a fine red dotted rash over his arms, legs, and abdomin as the day progressed. He has been scratching here and there but not complaining. What a soldier. He still sings "I'm in the Lord's Army". Elaine has been appointed General in Colby's army. Her and Jack may get a call from the Red Cross for recrutment since they did such a wonderful job Wednesday at the blood drive.

Jack will be bringing Grandma, Happy and Cameron when he comes tomorrow evening to visit with Colby. His hair is gone all but a little fuzz and he still has his long beautiful eyelashes and eyebrows.

Colby said to thank everyone for praying for him and that he will be home in a couple weeks to go to church and see his friends. He will wear his cowboy hat, blue jeans, belt,and boots to church. These words are his, I hope you understand them.

Jack will spend Easter with Colby and I with Cameron. I will update journal from home.

HAPPY EASTER EVERYONE

Laura and Colby

Thursday, March 28, 2002 at 10:36 PM (CST)

DAY +13

This has been a terrific day. I just hope Colby didn't wear himself out.

Good morning Jack and Virginia!! I know you will be checking in first thing in the morning.

Cameron was able to spend the night with daddy. I am sure they both enjoyed that. The morning was hard because Cameron didn't want Jack to leave him for work. He is too smart, he catches onto all the tricks. It breaks Jack's heart to leave him. It is getting harder for Jack to be separated from his family. HANG IN THERE BABE, WE ARE COMING HOME SOON. Cameron had a great day at Diane's. They had an Easter Party today.
Thanks Diane for caring for Cameron.


The day started with the morning ritual of Colby and Dr Shaw throwing "splat" about the room, and hitting everything and everyone in the way. Splat is similar to playdo but sticky. Colby is full of energy today. It is wonderful to see him being so wild.

The plan is for transfusion of red blood cells for hemoglobin--6.7; platelets--34,000; and white count-- 0.3. Things are going great. Dr Shaw reveiwed the slide and found a few more cells. Keep up the prayers, they are working. His antiemetics were decreased to only twice a day then tomorrow they will be only as needed.Keep your fingers crossed that the vomiting doesn't come back to haunt us. There is some redness and swelling at the left chest broviac catheter. A culture was sent, so we wait for any growth.

I forgot to mention that Colby made the front page of the Herald Standard on Monday March 25th. Article was posted for the blood drive yesterday.


His afternoon playtime was with Alex(from childlife). He had a great time giving orders and winning all the races. His evening started with a visit from Gina who brought a doctor kit. They also had to play with the remote car and motorcycle. We were able to sneak a bath in before Jake and Jamie came. I think we were all exhausted before Colby. He really enjoyed his time playing and of course flurting with Jamie. I captured the moments in between dodging the ball. It sounded like we were having a party in the room. We were singing and dancing to Shania Twain. Colby hated to see them leave. Thanks for coming and we will see you soon.

GO CELLS GO!!!!!!!!!!!
Love to all

Laura

March 27, 2002 Wednesday

DAY +12

Well, I finally did it everybody. Yes, I am up to date on Colby's journal. I know Jack would be so proud of me. It has taken many late nights. The girls on 8 north won't know how to act when the night shift actually sees me in bed before they do their morning blood draws at 4:00am. Thank you all for being so patient with me.

Colby had a good day. He is a little cranky but he has every right to be. He is probably exhausted from all those cells being produced.

He did receive a platelet transfusion this morning for a platelet count of 13,000. He will more than likely receive a blood transfusion tomorrow-his hemoglobin today is 7.9. To date he has had no reactions to any of his blood products..

Another day of no vomiting.. YEAH!! The doctor had discussed making reglan and benadryl only as needed but it took so long to get it under control that we decided to leave well enough alone. I would really like it to continue until he is starting to eat something. He associates vomiting with eating.

Thank you Harry(Barb's son-in-law) for your time of spiritual support. I really enjoyed talking with you. Good luck with your new baby.

Yes, the blood drive was a success. There were over 200 people who came. Some were turned away because of various reasons, but the American Red Cross collected 130 or so units of blood. We appreciate your generous gift. Thank you for taking time out of your busy schedule to sit and wait and then to donate blood. Many thanks to Elaine, Chris, Suzanne, Jack, and the volunteers for organizing the event. It was an honor to meet the people behind all the endless work that went into the preparation for the blood drive. You all are very special to our family.

Thank you Grandma and Happy for bringing Cameron in to visit. He and Callahan provided entertainment while others were waiting in line to give blood.

A special thank you to Aunt Lynda for giving blood and then staying with Colby while I accompanied Jack at the blood drive.

While we were away, Colby's right chest broviac decided to start leaking. It was again patched and glued. He enjoyed his time with Aunt Lynda as he always does.

A reunion between Colby and Cameron was uplifting. At first Cameron wasn't quite sure about Colby. The last time he saw Colby, he had hair and now none. Colby mentioned how much Cameron has grown. Frequent hugs between the two was touching. Daddy buzzed Colby's head to make it a little more even. He is so adorable(you too Jack). Cameron actually kissed Colby on the head when he left.

Many thanks to the community for your continued support

Laura/Jack

March 26, 2002 Tuesday

DAY +11

FANTASTIC NEWS EVERYONE--ONE MONOCYTE was seen. This is the first white cells produced by the bone marrow. We were thrilled with these findings. We knew Colby could do it. He is so strong!!! When I called my husband at work to tell him, he had his own pep-rally at the shop. Thank you all for your prayers. We wouldn't be at this point without each and everyone of you.

Colby's energy level today is a little sluggish but he is still able to play. He did have a restless night. It must be all that work his body is doing. He has been doing alot of talking in his sleep lately. He must be having conversations with all those angels.

Jack and Colby had a conversation over the weekend about Colby's hair loss. Jack told him that with his bald head, he would get all the girls now. Colby's response was "you can still hang out with me Dad". He has such a good outlook. I can't wait to rub and kiss his head. It is a little sensative right now. I guess it has been protected for so long. Even at birth he had a headful of hair.

Gina and Sammie the snake came to visit this evening. She couldn't leave the room without playing crash up with his remote control car and motorcycle. It is so nice to see him laughing and having so much fun.

Cameron got to go to his house today and play with Marge. They had alot of fun. I am sure Cameron enjoyed playing with all Colby's toys. You better enjoy now Cameron because we will be coming home and it is back to sharing. We love you.

Thanks to all for signing the guest book on Colby's website. We look forward to reading it. He is really missing all his friends from daycare and church. He talks about you all the time. xoxoxoxoxox to all,
Love Colby

Missing you

Laura

March 25, 2002 Monday

DAY +10

Guess what--Colby only vomited two times today. It was a terrific day filled with so much fun and energy. We played on the floor most of the day with his toys. The Power Rangers finally came out of their container after five days. What a blessing. His little body has been working so hard producing cells. I really enjoyed watching him get so excited today. We called everyone and he told them he was feeling much better. Jason and Gayle are having just too much fun in his room. He will never want to leave. It really hasn't been hard to entertain him in the room thanks to all the cool toys everyone has brought.

Platelets are at all time low--12,000(down by more than half from yesterday) Hemoglobin holding 8.6

Colby's hair falling in his face. He has become very thin. I can't beleive how blonde his hair is now. There are only a few areas of dark hair. He was given permission to cut his hair. "Don't anyone try this at home." This stunt is only for chemo kids. Colby really enjoyed telling everyone how he was allowed to cut his hair. He also added that this would be the only time he would perform this act. He looks so cute.

Hair be gone

Laura

March 24, 2002 Sunday

DAY +9

Dad reports that Colby had a good morning. He was taking his bath before 9:00am--dad has the touch. Jack said there was a lot of hair on the pillow this morning. A big difference from when I left him less than 24hrs ago. The cough that he has developed has cause some concern. A chest xray was done and it was clear. GREAT!!!! It must be the mucositis taking its toll but we will closely monitor for changes.

His vomiting has decreased to about every 1/2 hour now. But no appetite and no desire to drink at this time.

Cameron and I went to church this morning. Everyone asking how Colby was doing. The members of the church have been very supportive and caring. Please continue to pray for our friend Parker and his family. I think Cameron is filling in for Colby until he returns to church. Cameron has been enjoying all the kisses and hugs that he is suppose to pass on to Colby.

Cameron and I had a wonderful day. It feels so good to be home. I can't wait for the day we can all be home together. He is growing up so fast. Every time I come home, he is in a larger shoe size. He is receiving wonderful care while we are apart. This makes me so happy. He is adjusting well to all the changes. It has been over two weeks since the boys have seen each other. I am hoping we can get them together Wednesday after the blood drive.

Thank you Aunt Mar and Uncle Bob for having us over for a home cooked meal. It was so tasty. Thank you Mar for the "Jesus", it is absolutely beautiful and we put it where we can see it from anywhere in Colby's room. It was nice seeing everyone. It has been a while.

Jack and I will be able to hold each other tonight before he goes back home to work in the morning.

Bless you all

Laura

March 23, 2002 Saturday

DAY +8

Colby's spirits were really down today. He continued to have frequent vomiting. This time he asked me "when will it stop--there can't be anymore cancer in there, my belly is empty" He was very quiet today. He barely opened his eyes when Jamie, his buddy came in to visit. Even the spiderman Gayle sent in didn't phase him. Well, Uncle Mark gets the award for the day. He brought E.T. and a race car over. The race car actually got Colby to the floor for a whole 10 minutes.

Dr Shaw (Colby's primary hem/onc doctor)is rounding for the next 2 weeks. It is nice to see him. We discussed the uncontrolled vomiting and ativan was suggested. I think we will hold on that for now and just adjust dosage on current antiemetics. HE will receive blood and platelets today.

By 5:00pm his temperature went up --blood cultures drawn and IV fortaz and vancomycin started.

Jack was instructed on the "how to do list" before I left to go home. Don't worry Jack, his bark is worse than his bite. You will be fantastic.

I called to check on them once I got home and they actually had a 10 minute playtime. Colby even talked on the phone and told me his healing prayer. It was a little easier sleeping knowing that he was in better spirits than when I left. Cameron was asleep at Grandma's so I will see him in the morning before church.

Colby's hair thinning but no bald spots at this time. The first time he found his hair on his hand, he appeared frightened. But then shook it off. Colby will spend the day with daddy tomorrow.

Laura

March 22, 2002

DAY +7

Colby does so well with the various staff and doctors. Tammy has been wonderful with explaining the answers to all my questions. Thank you for taking time to listen. You are very thorough and easy to talk to.

Colby was feeling a bit more himself this morning. The vomiting continues but his spirits are better. He even told on himself for not brushing his teeth because it made him vomit. Then he said "Hey mom, since I told the truth I don't have to go in timeout." How can I argue with that?

His counts are
-hemoglobin 8.3
-platelets down to 13,000(the lowest this admission) He received platelet transfusion today.

Thank you Dr Ahuja, Dr Goyal and Jason for stopping in to check on Colby.

Gayle is always so thoughtful. She brought a basketball hoop and ball (soft of course) in for Colby and Jack to play over the weekend. I don't think he will be up to much because of the mucositis. He received a dose of morphine 1mg for throat discomfort. He is starting to drool a little which is a sign that it is getting hard to swollow due to increased pain. He was restarted on Kytril for vomiting. Not but a few sips through out the day have entered Colby's mouth. He doesn't even like to be cuddled. Boy, do I miss that.

Colby continues to be a fighter and he will "beat this cancer". That is his little chant. He is my hero and I obtain my strength from him. He is my angel on earth.

Well, after all this time Colby started to shed his hair today. Even though I am accepting of the hair loss, it still sickened me when I saw it lying on the pillow. He will be cute as ever but this is his first visible outward sign of cancer.

Jack will be down tomorrow and we both look forward to seeing him.

Laura

March 21, 2002 Thursday

DAY +6

Jack stayed over night with Colby and I. Colby continued to vomit even with the use of antiemetics. The plan is to place Colby back on scheduled antiemetic around the clock and as needed. He hasn't said anything yet, but I am sure he has had his share of vomiting. He has become weak and doesn't even want to get out of bed. Uncle Mark and Rev Sharp came to visit. They must have left with an upset stomach after watching Colby vomit so well. His favorite thing to do now after he vomits is to watch the cooking channel--yes that is right the cooking channel. He is never boring that's for sure.
Let's keep our fingers crossed that tomorrow will be a better day.

Colby received directed donor red blood cells today for hemoglobin of 7.2----platelets 26,000 after that boost yesterday. He was started on lasix twice a day to help with his urine output. His kidneys functions look normal. He just needs a little help.

He still wears his guardian angel "Maria" around his neck. Thank you Joyce for such a wonderful gift. He tells me that Gloria(a friend of the family) helped him pick a name. Colby has been asking about you Gloria. We hope to see you soon.

Mommy misses you Cameron--sending hugs and kisses your way. I'll see you in a few days if everything is under control here. Thanks a million to all of you surrounding Cameron with love and distractions. I am sure the days are filled with endless love and caring while his mommy is away.

Laura

March 20, 2002 Wednesday

DAY +5

Even though we hoped Colby would not suffer with any major problems, he has been vomiting continuously today. All the vomiting has caused increased irritation in his throat. Even through all the vomiting, he still says he is vomiting all those cancer cells and getting them out of his body. Oh, and by the way, the cancer cells come out the other end too. His sense of smell is so enhanced that I can't even come around him after brushing my teeth. He tells everyone not to breathe on him because they stink. It appears to be worse before he vomits. He did get morphine 1 mg for throat pain twice today.

His counts today down
-hemoglobin 7.8
-platelets 16,000
-white count 0.1
He received a platelet transfusion and tolerated it will.
Colby still has all of his hair but it will soon start to shed.

Do you want to know how lucky Colby is? He won a train set from the hospital raffle. They had their annual Spaghetti Dinner today and all the patients and parents were invited to dinner ---FREE. Too bad Colby is vomiting so much, he has been talking about spaghetti all week.

A visit from Nurse Anne (from the clinic) actually was the only thing that got him out of bed today. They sat on the floor and put his train set together. Thank you Nurse Anne. We love you.

Even with all the vomiting he was still able to obtain his 60th sticker today. He got a safari play set which actually was a great lure to the red bubble bath.

He vomited every 10 minutes and finally the reglan and benadryl hit him. Off to sleep he went. Jack had arrived just in time to catch Colby before he went to sleep. Colby was happy to see his daddy even though he didn't feel very well. I was very happy to see Jack too. I really miss him and Cameron.

Love
Laura

March 19, 2002 Tuesday

DAY +4

Yeah, the transfusions yesterday brought Colby's counts up nicely.
-hemoglobin 8.3
-platelets 33,000
-white count still dropping 0.1 There will be no need to do differentials on the white cells because soon there will be none.

Colby remained active but has not put a bite of food in his mouth. I guess his little tummy is doing flip flops. He was able to take a few drinks of his now favorite drink---iced tea. I guess his taste buds have taken a hit also. He required another dose of lasix to boost his urine output. Toward evening his energy had been drained and he spent some time in bed. He never complains. But his restlessness and grimacing during his nap proved otherwise. Later that night he did mention that his throat was hurting on the right side. The beginning of mucositis. The lining of the digestive tract have cells that divide rapidly and can be severly damaged by chemo and radiation. This destruction causes a breakdown in the lining and leads to ulcers and mouth sores. There are no signs of mucositis in Colby's mouth at this time but who knows what damage we can't see. He remains pleasant and cooperative.

Jack and I would like to thank Suzanne and Darrell for support and guidence with the Make A Wish Foundation. I don't think Colby quite understands the whole thing but he is willing to give it a try.

Dee and her husband Franklin have been terrific at handling our real estate issues while our minds are preoccupied. Thank you so much.

Thank you Elaine and Larry for sending Marge to help with the children. It has been a blessing. We appreciate your sincere concern for our family. I Am really looking forward to meeting you and giving you a hugh hug and kiss for being so thoughtful. Elaine, my husband has expressed his overwhelming gratitude for all your emotional support and I am so glad you have come into our lives.

To my mom Dorothy, and my dad George, thank you for making me such a strong and respectful person. I LOVE YOU BOTH SO MUCH. You are always in our prayers and thought of each day. Good health to you both. xoxoxo from the boys.

Laura

March 18, 2002 Monday

DAY +3

I don't know where Colby gets all his energy. He was very playful and chipper this am. He has been reciting his prayer and eating here and there. Karen and Aimee have been Colby's nurses most of his stay. Everyone has been great with him. We love all of you. You all are very special. Thank you for all your hospitality toward Jack and myself. Your kind and caring words will always be remembered. We have to thank the secretaries and cleaning personel also for their words of encouragement and always being so polite and helpful. What a GREAT TEAM!!!!!

Colby's counts did take a drop today-
-hemoglobin 6.8
-platelets 24,000
-white count 0.3
He will receive directed donor platelets and red blood cell transfusion today.

His buddy Jamie came over for a visit and brought him a space invader computer game. He just loves to play with her. He thinks she is his personal assistant.

Aunt Lee came for a visit. We played "monkey in the middle" and I had to be the monkey.It was an afternoon filled with high energy and fun. Aunt Lee and I got our aerobic exercise in for the day. Thanks Gayle for entertaining Colby while Lee and I had lunch. Thank you Barb for your idea of selling candles to benefit Colby. Hey Linda, Colby really liked the God's Box and blue bird. Thanks!!!

Colby has been talking about Grandma's long spaghetti. He even drew a picture of a plate full of spaghetti, garlic bread, drink and a hotdog with ketcup. Too bad his food has to be specially prepared, but when we get home we look forward to Grandma's cooking again.

He had a great day, you would never know by looking at him everything this little boy has been through. Thanks to God for keeping him so strong.

The evening ended with a dose of lasix(diuretic) because he was behind on his output, a dose of tylenol for a headache and a midnight snack of crackers and juice. Late night--we finally went to bed at 1:00am. I guess all those nightshifts during pregnancy have made him a night-owl.

Cameron had a doctor visit today and was started on an antibiotic and aerosol treatments for his congestion. He is a strong little guy. He seems to be doing well with all the changes and his family being separated. WE LOVE YOU CAMERON!!

Laura

BLOOD DRIVE IN HONOR OF COLBY

There will be a blood drive in honor of Colby at the Uniontown Fireman's Social Hall located on Dunbar Street in Uniontown on Wednesday March 27, 2002 from 12:00pm-6:00pm. Hope to see you there.
A special thank you to Elaine and my husband Jack for organizing the blood drive. It has taken alot of time, money and commitment to plan this event. You have done a FANTASTIC job. Many thanks to Virginia for handling and directing all the phone calls at the shop. Thank you Janet,Emma,Chris,Lee Ann,and all those responsible for passing out flyers. A loving thank you to Brian for putting together the "pray for me" flyers. They will be given to the donors at the blood drive. Thank you Mark IV Little Printing company for the donation of flyers. Thank you Paul and Wendy for providing refreshments during the blood drive. Thank you Diane (McClure and Wolf) for the list of many directed donors. Thanks to all those who have already donated as directed donors for Colby. You all are remembered and cherished and we are forever greatful.

March 17,2002 Sunday

DAY +2

While Cameron and I attended church this morning, Jack and Colby had a heck of a time with vomiting. He was given bendryl and took a long nap.He ate a banana and drank a few sips of juice for lunch and by 4:00pm he was vomiting every hour. Poor Colby, he does so well when he vomits. He tells us that " he is vomiting all those cancer cells up so he can get better." What a SOLDIER !!!!

Thanks Aunt Lynda for keeping Cameron tonight. He really enjoys his time with you, BJ, and Uncle Bill.

Colby was excited to see his mommy but the phenergan took over shortly after. Jack sure was glad to see me. He gets very emotional when Colby doesn't feel good. He took wonderful care of Colby while I was away. He even took a few notes.

Could you all please say a special prayer for Parker, son of Meg and Todd. He was born prematurely in January and has been on a ventilator. They plan to start weaning him from the vent. Please add him and his family to your prayer chains. Through God all things are possible. Many thanks to all.

Laura

March 16, 2002 Saturday

DAY +1

The day after......Colby spent the day with Jack while I continued to have some cuddling time with Cameron.

It was an uneventful day. Colby ate a few bites of cereal and banana. Appetite poor but he continues to receive IV nutrition (TPN). He spent the day teaching Jack about the computer and the cool construction game. He is in great spirits.

Counts still above transfusion limits. He will receive methotrexate (4 doses) and continue on Cyclosporine A to help prevent graft vs host disease (GVHD). He will also receive G-CSF for the first two weeks after transplant to help stimulate the growth of the donor marrow. He hasn't been vomiting so his benadryl and reglan are now only as needed.

I would like to take a minute and go back to our admission day. If you recall, Aunt Mar and Uncle Bob gave Colby an Angel Bear with some healing medals. The bear plays Christmas songs when you squeeze the hand. We put the bear in the anti-room where we wash our hands prior to entering the room because Colby was not allowed any stuffed animals in the room. This Angel Bear has now become our door bell since we can not see who is entering the room. The strangest thing about this is the fact that the bear will become activated without touching his hand. The only time it doesn't go off, is when Jack, Colby ,myself, or the pastor enter the room.

Keep praying that those donor cells find their way to Colby's bone marrow.

Love you all

Jack/Laura

March 15, 2002 Friday

DAY -0 The BIG day

Well to start off, Colby woke up in a terrific mood. He must have known this would be the day for a second chance at life. NO more chemo, NO more radiation, NO more long stays in the hospital. He ate some cereal and dolphin crackers for breakfast. He was so excited because Daddy would be coming soon. Jack arrived around 9:30am and was warmly greeted by Colby.

Ben, a nurse from 8 North, came in on his day off to assist with Colby's BMT. The room was filled with staff, Dr Krish, Ben, Nancy, Tammy, Jason, Sue, and Pastor Freeman. This was the re-birth of our son Colby James Cole. Jack hasn't stopped crying since the first birth when he cried for 26hrs while I was in labor.

Colby was premedicated with solumedral, benadryl, and tylenol. Then there was a slight delay. The Bone Marrow Donor's blood type was A+ and Colby O+. This is called ABO mismatch. So the bone marrow needed to be filtered a second time to decrease any risks of reaction. The transplant would now be 12:00-1:00pm. During our time of waiting, Pastor Freeman came to offer spiritual support and a little entertainment for us all with his impressions.

Well, time flew by quickly and the transfusion of bone marrow was about to begin. Jack held Colby ever so tenderly on his lap as the nurses were connecting the tubing through which the marrow would flow. It looked like diluted blood. This 95cc of marrow would be the GIFT of LIFE. "Good things come is small packages."

Just as the marrow entered Colby's broviac catheter (12:35pm), Jack took from his pocket a healing prayer he was teaching Colby. Before Jack said the first word-----Colby, who had never said the prayer without help, recited the prayer Word for Word.

-O Lord Jesus, I do believe,
-but strengthen my belief.
Come into my life; the door
of my heart is open. Calm
the storm within me, and
give me the peace that brings
healing. Give me that trust
in You that brings real cour-
age to overcome fear. I reach
out to You in faith to feel
the strength of Your healing
power, Amen.
Thank you Lucky Leo for
the prayer card.

Needless to say there were many tears of joy. A sense of peace came over the entire room and we knew everything was going to be okay. Colby fell asleep in Jack's arms and a river of tears.

He woke up from his nap and was surrounded by all the great folks who have been responsible for his fantastic medical care. Jack and I thank each and everyone of you. He then was ready to play with his buddy Jamie on the computer, eat a few bits of spaghetti O's,and receive his surprize for obtaining 60 stickers on his job poster.
** GREAT JOB COLBY YOU ARE MY HERO **

Daddy stayed with Colby and I returned home to see Cameron.

God Bless All

The Cole Family

March 14, 2002 Thursday

DAY -1

It felt so comforting to have Jack hold me last night. Thanks Babe ---I miss you.

Today was Colby's last radiation treatment. He received a certificate award and he even got a film of his lungs for his scrap book. He said he looks better on the outside.

Well the urine and nasal cultures are negative. Not much new to add from the medical standpoint. His counts all above transfusion limits. His ANC is 2760. Cyclosporin A started today to help prevent graft vs host disease (GVHD).

We spent our evening in the playroom since this would be the last time he could leave his room. We had a great time tearing the place up--but we did clean up Gayle.

We got the news that THE BONE MARROW had arrived at 6:20pm and was sent to the lab to be prepared for tomorrow --BMT-- Colby's new birthday and his second chance of life. God bless the donor and keep her safe. Colby said his guardian angel "Maria" would protect her. It was very hard to stop the tears. Jack, we have made such strong and amazing children.. I love you guys with all my heart and soul.

The evening ended with Colby saying he was hungry and ate two bowls of cheerios--and then drew a picture of his family at the beach holding hands. We didn't get to bed until 12:30am.

Everyone say an extra special prayer tomorrow around 11:00am for a successful bone marrow transplant.

Laura

March 13, 2002 Wednesday

DAY -2

Colby was a little cranky this morning when he had to be waken for his radiation treatment. Valarie saw a different side of Colby. After a little sweet talk he was very cooperative. The afternoon was a different story. He repeatly stated " I am not flipping over --do you understand me" He was so funny. What a character.

Dr Krish was right on top of Colby's symptoms and ordered a urine analysis and nasal cultures. His appetite still poor but he is drinking here and there. Only mild vomiting today. His hands are a little dry from the radiation and his hair is becoming course. For those of you wondering-- he hasn't lost any hair yet. We had his hair cut short prior to his first chemo in January....He actually needs a cut but it will soon fall out.

The evening was highlighted with a visit from Daddy. They went to the playroom at 10:00pm then came back to the room and started vomiting. I feel so bad for the little sweetheart. He must feel awful but he never complains.

Laura and Jack

March 12, 2002 Tuesday

DAY -3

By this time, Colby would not put anything in his mouth. He continued to vomit. The plan is to start him on HYPERAL and Lipids(nutrition given through his IV). I am glad they started this because he hasn't eaten but a few fruit loops since lunchtime Friday. He will also start on reglan and benadryl to help control the vomiting.

Congrats Colby---- He has a chart with jobs that he has to complete everyday and everytime he gets 60 stickers--he gets a prize. He is doing well so far. As he starts to feel yuckie it will be harder to get the stickers.

He did well once again at radiation. Valerie is so proud of him and so am I.

A visit from Nurse Anne made his day. We went to the playroom three times today. We had a blast. Thanks Gayle and Becca for cleaning the playroom at the end of the day so we can enjoy it.

Colby only vomited once today, but now the loose bowels start. He tells me that he is pooping the cancer cells out of his body. I can't argue with that. The only concern is some "hurting" when he urinates and his urine is dark. Opps I forgot about the sneezing. I will mention it to the doctor in the am.

Today was Cameron's first day at daycare. He really enjoyed it once he was able to leave Grandma. It isn't easy to leave a tearing baby. But the tears were only tears of trust Grandma. This shows how much he loves you.

My mother is recovering but still very sore and very hungry. She can't wait to get those tubes out. Love you mom. xoxoxoxo

Colby is looking forward to Daddy's visit tomorrow ---me too.

Laura

March 11, 2002 Monday

DAY -4

The day started with the red bubble bath. Then off to the oncology radiology dept at 7:30am. You would have been so proud of Colby. He laid so still on the bench after measurements were taken. After the first ten minutes, he had to flip on the opposite side for another ten minutes to finish his treatment. I got to watch him on a TV screen and could talk to him via an intercom. We did wheelies in the wheelchair for entertainment on our way back to the room

He did enjoy his one on one time in the playroom with Gayle from 11:00-12:00. She is a great person, and Colby really likes her.

Back to radiation at 2:00pm for another treatment. Then the rest of the day was his. He played on the computer , ate some fruit loops, and a little hot chocolate. The above looked better before it came back up partly digested. Phenergan finally kicked in after a few more episodes of vomiting. His spirits are still good. And to him, he is just getting rid of all that cancer. Needless to say he had a 2hr drug induced nap. He was a little low on urine output so lasix was given. He was up every hour to urinate.

Thanks Aunt Lynda for keeping Cameron tonight.

Laura

March 10, 2002 Sunday

DAY -5

I got to spend the day with Cameron. He is doing so well with the potty. He frequently goes to the door and says "bye-bye, see you soon, I am going to the hospital to see Colby". He loves his big brother so much. I wish they didn't have to be apart.

I returned to CHP late afternoon. Colby vomited and slept most of the day. Poor Dad he really hates to see the kids sick.
This was Colby's last day of cytoxin. We will see the effects in 7-14 days.

Counts are holding strong. He will start total body irradiation (TBI) tomorrow. Twice a day for about 20 minutes each. Total of 7 treatments. His last dose will be Thursday am.

Wish us luck

Laura

March 9, 2002 Saturday

DAY -6

The day started off with a red bubble bath(hibiclens--skin cleanser). Colby received his first dose of CYTOXIN(very strong chemo drug) this am. He will be taking MESNA and LASIX to help decrease the major side effect of cytoxin which is irritation and bleeding of the bladder. He will be taking a ton of anti-emetics to decrease vomiting. Also he will be on long term antibiotics (acyclovir and diflucan) to help against infections.

Counts are good for now
-hemoglobin 10.5
-white count 3.8
-platelets 262,000
they will drop rapidly

Aunt Dee and Tanya came from Ohio this evening to visit and bring some cool toys. Hope you girls have a strong stomach to handle all the vomiting. The cytoxin has already left it's trademark. Colby handled the vomiting well. He responded by saying "I am vomiting all those cancer cells up" and in between he would play. He is such a soldier.

I came home to see my mother who just had an emergency appendectomy. She is sore but doing well. Thank you Dr Vanek and the OR staff for taking such good care of her. She was sent to the first floor and I finally got to meet Colby's secret pal--LU LU. She has been sending him cards and gifts since his diagnosis. Now, she will be taking care of my mom. It was very nice to meet you LU LU.

Jack said Colby was fast to sleep around 11:00pm. I miss you guys.

Love

Laura

March 8, 2002 Friday

Day -7

I can't believe the day has come. This was Colby's last drive to Pittsburgh for a while. Jack drove us down and made sure his family was settled into the room where we would spend the next month or more. We arrived at 10:20am.We are in room # 8631. The room is spacious. It even had two sleeping chairs,TV, VCR,desk and a bathroom.(sounds great huh). Jack said he felt like the Beverly Hillbillies because we had so much stuff.

We were greeted by Jason, the BMT coordinator and the nurses. It was a warm welcome but I could not help notice the looks of sorrow in their eyes. Maybe it was just my imagination. They have seen many BMT patients and have experienced the ups and downs of the treatment protocol. I just keep telling them that Colby is different, you will see. I realize that he will be very sick but with all the prayers, healing hands, and his guardian angel "Maria", he will float near the bottom without sinking. He has an advantage because he hasn't gone through years of chemo like some other cancers.
Daddy left around 12:30pm to return to work.

Colby ate a good lunch and then met with Dr. Goyal and Tammy(PA). IV fluid was started and Immune globin was given and then off to the playroom with Gayle.(does that suprise you?)

Dr. Shaw and Dr. Ahuja came for a visit. Colby still shooting them with his imaginary laser gun.

He will take alot more medication this round but most of it will be intravenous.

The evening was uneventful until 11:00pm. His right chest broviac catheter started leaking (this is the first catheter that was placed January 9, 2002.) The nurses said they had a repair kit and that they would glue it back together. Imagine that. Well at 1:30am they were cutting and patching the tubing together.

Cameron was with Grandma and Happy and doing well. He is doing terrific with the potty. I am so proud of him.

Laura

March 7, 2002 Thursday

DAY -8

This is the last day at home for Colby for what will seem like an eternity. Tomorrow he will be admitted to 8 North at CHP for his conditioning prior to bone marrow transplant scheduled MARCH 15, 2002. This day will be considered his new re-birth. He loved the idea of having two birthdays. The day was filled with sadness and tears because our family will be separated once more. We are praying that this will be the last time.

TO THE PANDACARE DAYCARE PARENTS:
we greatly appreciate all your support and time spent raising money for misc expenses while Colby is ill. You all have hearts of gold and I can't wait to be reunited with each of you to thank you personally. I know this has been a difficult time for each of you because of the transition and new ownership, but you still continue to GIVE just as you always have. I will always love and cherish the memories that we had with the children. And don't forget, they are still my children too. Thank you for allowing me to be a part of their lives. I am HONORED. I miss all of you!!!!!!!!!!!
I am very PROUD of you all for sticking together. I am blessed to have such wonderful friends.

If anyone has been reading this journal and they haven't been mentioned, please don't feel left out. You have not been forgotten. There are so many people to thank. I started this journal late and have been pulling things from memory in order to get it up todate. Know that we appreciate all that has been done. The support and prayers have been overwhelming. God Bless You All. We Love You!!!!

The Cole Family

March 6,2002 Wednesday

DAY-9
On the road at 7:30am to CHP for Colby's 2nd broviac catheter and a bone marrow biopsy. We arrived at 8:45am (15 minutes early--for those of you that know me, this is a record). The preop area was filled with children having procedures. Jason came to make sure we were doing okay. He has been very helpful with the BMT process (even though I got him in trouble--SORRY Jason). Off to the waiting area to talk with the surgeon and anesthesiolgist. The question was brought up about premedicating before going into the operating room. He was doing so well, we decided not to. I had prepared him for what to expect when he went in the room and he seemed accepting and not fearful. When the time came for him to go (11:00am), he clinched on to me sooo tight,I could not pry him off. Sorry Colby this isn't the time to bargain and make deals. The good thing is he won't remember any of this.

Dr Ahuja would do the bone marrow aspiration first (he is wonderful with Colby), then he would be in the hands of Dr. Kane, the surgeon for placement of the broviac. He reminded me of Dr. Vanek (an excellent surgeon at Uniontown Hospital). Having worked in the OR, I felt comfortable that Colby was in good hands.

12:00pm The surgeon updated me on how well Colby had done and that he was sent to the recovery room, and by 1:00pm I was able to see him. He was sitting up in the bed asking the nurse what all those buttons were for on the monitor. He questioned why his heart wave wasn't on the screen. Only Colby would ask questions like that. From there we went to same day postop where Colby had to be observed until discharged. He did well with drinking and had no nausea. We begged to be discharged so we could go home and enjoy the beautiful day. It would be the last time we would be able to be outside for a month or more.

Laura

March 5, 2002 Tuesday

Hello everyone,

Just a few more days until Colby is admitted to CHP. So much to do . Cameron has reached a big milestone in his little life---Yes, he is now pottie trained--HOORAY for Cameron!!! No more yucky diapers. Colby was a big help and it would not have been so easy without his help. He helped me cheer and dance with each tinkle. Cameron enjoys wearing all those cool underwear, and they make great hats too.

I need to thank my husband's secretary and friend, VIRGINIA. She found this website and through her I got to meet Dana and her son Zachary who also was diagnosed with JMML and had his BMT 5 months ago and is in remission.. We continue to pray for them and the other JMML families. Now that I have found them I don't feel so isolated because of this rare leukemia.

Dana, you have been an angel. Thank you for always checking in on us even with your busy schedule. We love you..

Tomorrow Colby will have his 2nd broviac catheter placed and a bone marrow biopsy in the OR. If the bone marrow looks good-- then onto the next step.

Laura

March 2, 2002 Saturday

Well, this will be my last day of work until Colby comes home. I would love to thank the employees at The Uniontown Hospital for their generous donation of PTO hours(paid time off). Thanks to all of you, I can stay with my son, Colby, during this time when he really needs me. You all have been very supportive through out this crisis and there are no words worthy enough to thank each of you. I AM GREATFUL!!!!!!!!

The next week will be filled with last minute details. Cameron will stay with Grandma, Happy and Aunt Lynda. We decided to send him to daycare 3 days a week for socialization. Thanks Tammie, Taylor, Tim, Uncle Bob and Aunt Diane for having Cameron. I know he will enjoy being around other children since his playmate will be in the hospital. Colby and I will be staying at the hospital. Jack will have the hardest job. He will continue to work, go and see Cameron in the evenings, come and see Colby and I and if that isn't enough, he will also be handling the household. Please pray to the Lord, that he might keep Jack safe and healthy to withstand the emotional strain that he will be faced with on a daily basis.

Laura

February 28, 2002 Thursday

Today we met with the Transplant Team. A detailed program was discussed page by page with Jack and I. It went over the drugs, irradiation,and the transplant process with all the possible side effects. It was alot of information and risks, but the only chance for Colby's cure.

The boys were home with Grandma and Aunt Dee, I'm sure they couldn't wait until we got home. Colby was to start on acyclovir orally for his ulcers on his lips. He will also receive it with his transplant. He did restart his cis-retinoic acid 2/24/02.


We have another challenge to conquer before Colby is admitted for transplant--potty training Cameron---- Wish us luck.

Thanks to all of you who have been bringing meals over(everyone must know that I can't cook). Everything has been very tasty.

Laura

February 27, 2002 Wednesday

Our day started with a checkup visit for Cameron at 8:30am. Colby and Aunt Dee got to sleep in a little. Things went well at the doctors and Cameron is feeling a little better.

Aunt Dee decided to go along with us to our clinic visit today. We took Cameron along for the ride.

We started at the oncology radiation dept. The boys were occupied in the playroom as Dee and I listened to the treatment plan and all the side effects that go with it. Colby would receive total body irradiation (TBI) 7 treatments all together. I really don't think Colby will require sedation to hold still for 10 minutes on each side, but we will see. The most common side effect would be nausea and vomiting. Other side effects which usually occur after treatment are completed include: mouth sores, hair loss, inflammation of lungs, decreased bone growth, cataracts, diarrhea,and permanent sterility. The appointment ended with body measurements and a chest xray.

Off to the clinic after a bite to eat in the lunch room. The boys were starting to get tired. The clinic will never be the same. Nurse Anne to the rescue once again. She placed Colby on her back and galloped up and down the hall. His counts were good today--Hemoglobin 9.8; platelets 636,000(a record high); white count 3.8.
Plan is for his 2nd broviac catheter to be placed then onto the conditioning prior to transplant.

Thanks for your help Aunt Dee.

Laura

February 25, 2002 Monday

WE ARE HOME!!!!

This was one discharge that Colby couldn't wait for any longer. Even though his ANC was near 0, we were able to go home after his blood slides were reviewed by the hem/onc doctor.

The reunion between Cameron and Colby was touching. They embrassed each other and did not let go for a few minutes. Tears of joy filled our eyes. The hug that Colby gave Jack was a tear jerker. The love was pouring out and a glow surrounded them as they embrassed. It is wonderful to be HOME.

We have clinic Wednesday. I'll keep you all posted.

Laura

February 24, 2002 Sunday

We were looking forward to going home today but ANC still 0. Colby's lips are looking better. Hemoglobin 7.7 --he received directed donor blood today.Thank you Tracy.
He remains active and it is impossible to keep him in his room. He has become use to the mask since his ANC's have been low. I am getting concerned about his not eating. I did talk with the resident doctor and was able to stop the IV fluids long enough to take him to the cafeteria. We were eating macaroni and cheese at 9:30pm. After dinner we made a pitstop to see Gina in the admitting office. Colby enjoyed getting off the unit.

We will try discharge again tomorrow.

Laura

February 23, 2002 Saturday

Finally no fever!! Colby hasn't taken his cis-retinoic acid since admission. It will be restarted once lips start to clear. Colby's appetite has greatly diminished.
He still enjoys his time in the playroom. Today we went to the 10th floor playroom. It is much bigger and they just got a new pool table. Colby's favorite area is still the sandbox. He is really starting to become interested in computer games and is slacking off on the cartoons.

Cameron is spending some time with Grandma, Happy and Aunt Dee and of course we can't forget Aunt Lynda. You all are angels. We really appreciate the love, attention and terrific care Cameron has received since his family has been split up over the past two months. Jack has been SUPERMAN over the past months. He has been very strong and continues to hold the family together even though we are miles apart. I am glad that one of us can be there for Cameron during our separation.

Keep strong

Laura

February 22, 2002 Friday

Good news everyone!!!!!!!!!!!!
Colby does not need to have a spleenectomy.
He also has a perfectly matched bone marrow donor and two back-ups. This is terrific. Many people wait a long time for a donor. Thank you all for your prayers. Thanks also to the Doctors that have been working with Colby and have been excellent with his medical management. This has all happened so fast that is hard to catch my breath. Tenative transplant date is mid March. He will receive very toxic chemo and radiation therapy prior to transplant to destroy his bone marrow. After the transplant, we wait for the new marrow to start producing cells(engraftment). This process could take 1-3 weeks. During this time he will require many transfusions of red blood cells and platelets. Those of you that have already donated blood products, we thank you from the bottom of our hearts for this gift of life.

TO THE BONE MARROW DONOR---WE ARE FOREVER GREATFUL TO YOU FOR GIVING OUR SON A SECOND CHANCE AT LIFE. All we know about you, is that you are a female and we can meet you in one year if you agree. Our thoughts and prayers are with you during the donation process. God Bless You and Keep You Safe.

Colby's day was filled with pre-transplant testing. During his echocardiagram he watched the Power Rangers (does that suprise you?). He laid so very still. The next test was an EKG--well he didn't so so well holding still this time. He received a copy of his EKG and Echo for his scrap book.

Thanks Jason and Sue for your continued support.

A 24hr urine collection was started.
-hemoglobin 7.9
-platelets 63,000
-ANC 0
-white count 0.4

Uncle Mark came for a visit as he always does and brought with him a remote controlled motorcycle. Look out 8 north we have an unlicensed driver among us. Needless to say it was a hit.

Temp still elevated at 8:00pm so he was given tylenol. Gina from the admitting office came to visit and of course he started blushing. What a flirt!!

Laura

February 21, 2002 Wednesday

The boys were just enjoying the day with Aunt Dee who came in yesterday. It is great having an extra hand with the boys. The phone has been ringing frequently with calls of concern and people offering their help and support.

I was scheduled to work tonight, so I tried to catch a nap. Colby came to lay with me after just waking up from a nap. I thought this was strange. Jack said Colby felt warm and he was right again. His little hands felt like fire against my face. Temp 101.2F. I started packing our bag as I waited for word from the hem/onc doctor on call. I hated to tell Colby that we had to leave and go to the hospital. As we got in the van, tears overcame all of us. This was the first time Colby refused to go to the hospital. He was having so much fun with Aunt Dee.

We arrived in the ER at 11:00pm. He now has three blisters on his lips which are very painful for him. They were cultured along with his broviac catheter. His ANC was 0.
He was started on vancomycin and fortaz IV and we were in our room on 8 north by 3:00am. We were both exhausted.

Sorry we had to leave
Laura

February 20, 2002 Wednesday

It was difficult to work last night knowing Colby was home with a hemoglobin of 6.5 and a platelet count of 7,000. The lab where I work has been exceptionally good with running Colby's blood when I bring it in at 10:00-11:00PM.

Our day was long. Colby was transfused with blood and platelets. Nurse Anne to the rescue. She entertained him quite a bit today. Dr Ahuja is always getting shot at but keeps coming back. They have been wonderful with Colby. He is quite the character. You wouldn't know anything was wrong with Colby just by looking at him. He hasn't lost any hair after 2 rounds of chemo and really has been healthy and as active as any 4yr old.

Laura

February 18, 2002 Monday

****HAPPY BIRTHDAY CAMERON****
Cameron is now two years old. He talks very well and is able to give Colby a run for his money. We celebrated with a Teletubbie cake which he just loved. Thanks to all for the wonderful gifts and cards.

Thank you Aunt Mar and Uncle Bob for the angel bear and the healing metals that you(Bob)used when you battled cancer. This is a very sacred gift.

Colby has been complaining of a headache. His counts are low, but we will recheck them tomorrow. He has been in good spirits. His activity level is far from low. It is hard to keep him still. He tells me "the reason I get so excited is because I am so happy". He goes like there is no tomorrow. Jack and I are usually falling on our faces from exhaustion around 11:00pm and he is still going strong.

Love you all

Laura

February 15, 2002 Friday

Hello everyone,
We made it through another birthday! Colby's eyes are doing better now with the help of eye drops, he uses them at night and as needed.

The results from his bloodwork are:
-hemoglobin 8.3
-platelets 15,000 (transfusion time)
-white count 1.4
-ANC 800

Thanks to Dr. Timothy and the pediatric staff, Colby's transfusion of platelets can be given at Uniontown Hospital. YEAH
Colby said "Mom, I'm glad you don't have to drive to Pittsburgh today, Uniontown is just minutes away." How about that, my 4 yr old son is showing his concern for me.

The time that we would have spent in traveling and waiting for platelets at the clinic, was now spent at home with the children playing. When the platelets were ready, we received a phone call and we were on our way. Thanks Robinette and Sue.

During our time waiting at home, Father Bill made a visit for a healing prayer. Thanks Mary Jul, Shane, and Jonathan for arranging everything. Thank you Father Bill for your healing hands.

Thank you Bake for keeping me together when the times got really rough. You are a special friend.

As for my sister Lynda, I don't know what I would do without you. I LOVE YOU VERY MUCH!

There are sooooo many people to thank.

Thank you Lord for embrassing my family with such caring and giving people.

Always praying,

Laura

February 14, 2002 Thursday

HAPPY VALENTINE'S DAY

Happy Valentine's Day to my husband Jack.
Thank you for the best Valentine's Day gift anyone could every receive---COLBY---
HAPPY BIRTHDAY COLBY
Colby had a terrific day!! He and Cameron made cupcakes and decorated them with icing and sprinkles. They really enjoyed the spoon and bowl we used for mixing.

Most of Colby's pictures will be with his hands over his eyes but they will still be cute. He is in good spirits.

Thanks for all the wonderful gifts. Colby really liked his Power Ranger cake. He really wanted his playmates from daycare to join him in his celebration but at this time he can not be around crowds. To all Colby's playmates, we will have a reunion once Colby is medically cleared.....

With the approval from the doctors, we are making arrangments for Colby to have some of his transfusions at our local hospital.

Laura

February 13, 2002 Wednesday

All is well with the exception of Colby's eyes are irritated again. Back to the hypo tears and lacrilube ointment. Colby does so well with his broviac dressing changes and maintenance. Cameron is even starting to be a little helper and holds the flushes until Colby is ready for them.
Tomorrow we will celebrate Colby's 4th Birthday. He has been waiting for this for months.

Laura

February 11, 2002 Monday

WELCOME HOME!!!!!!
The boys (Jack and Colby) took a pitstop at the Harley Store on the way home and at the toy store. They were there for hours (maybe I should have warned Jack). Colby got his Birthday present a few days early. A Power Ranger/Transformer. Cameron liked it too.

Counts today as follow
-hemoglobin 9.7
-platelets 94,000
-white count 2.1
-ANC**********2037 WOW, GREAT RESULTS
His last transfusion was 1/29/02

He will continue on his cis-retinoic acid 60mg daily and bactrim 5ml twice a day on M-W-F. He has gotten much better at taking oral medication. His eye drops were discontinued.
Now, we wait for his counts to drop from the chemo. The doctors feel his recovery phase will take a little longer this time.

We are together again,
Laura

February 10, 2002 Sunday

Chemo day 5
Colby is still doing well. Him and Jack have been playing up a storm. The playroom is rarely empty. Since Colby will be discharged tomorrow, Jack will stay with him and I will stay with Cameron. It has been nice spending time at home. I didn't realize how much I missed it. Thank you Jack for taking terrific care of Colby while he is in the hospital. See you soon.

Many thanks to the Uniontown Hospital OR, PACU, SDS, and anyone else who was involved in the donation for Colby. You all have been so generous and kind.

Thanks for your continued support,
Laura

February 9, 2002 Saturday

Hello, Chemo day 4
Cameron will spending the night with Gloria while I go to work 7pm-7am. Colby and Jack are as expected having a blast. They really enjoy their time together. Colby is doing so well with his chemo, that I really don't feel too bad leaving him.

A special thanks and appreciation to The New Salem Presbyterian Church members. We are overwhelmed with the response of get well wishes and gifts. Thank you to all those who have added Colby to prayer chains, prayer list, etc. Keep it going, they are working!!!!!!!
Many people we have not yet met have also sent well wishes and gifts. You all are such wonderful and giving children of God.

God Bless

Laura

February 8, 2002 Friday

Chemo day 3

Hi,
Not much new here. Our days go by quickly. The playroom offers much entertainment for Colby and myself. His spirits and energy level are very high. He hasn't had anymore vomiting since he is being premedicated with pheregan. Cameron is home with Grandma and he has developed some congestion in his chest. I will leave tonight when Jack comes down and spend some one on one time with Cameron. Colby and Jack will have a blast together as they usually do.
They have not done any labs. His next counts will be on day of discharge.


Laura

February 7, 2002 Thursday

Chemo day 2

Colby was premedicated with kytril (antiemetic). Fludarabine was started at 9:00pm last evening followed by Ara-C at 10:00pm. By 12 midnight he was vomiting. Phenergan IV given allowed him some much needed rest and relief from the vomiting. His fingernail looks good (remember the one he injured while riding his bike).
The battle over the eye drops hasn't gotten any better. He is still bargaining and giving his rational when he should take them. He is so smart.
He has become quite the the attraction here on 8 north. The nurses and doctors get a kick out of him. He is famous for his scooby doo slippers, the staff have actually nicknamed him Scooby Doo. His rides down the hall on the base of the IV pole have also become a trade mark. He continues to have a magnetic personality.

Laura

February 6, 2002 Wednesday

Hi everyone,
Today is clinic day. White count and ANC are the determining factors leading to admission to CHP for 2nd round of chemo. Believe it or not, Colby is excited about going to 8 north to see the staff, and of course, the playroom.
-white count 3.1
-platelets 242,000
-hemoglobin 11.3
-ANC 800
When I heard ANC 800 I got excited because the ANC must be 1000 or greater to receive chemo. We could go home and enjoy the beautiful weather outside and be a family for a few more days. I know this was a very selfish thought but I wasn't ready to leave Cameron and Jack again. The separation has taken its toll on me. Colby was upset that he wasn't going to the hospital. I had to make a deal with him to stop at the toy store on the way home in order to lift his spirits.
Well, Colby won. A repeat count resulted in an ANC of 1,240. We are off to CHP for his chemo.
He will receive the same drugs as before. Ara-C and Fludarabine IV.

Laura

February 4, 2002 Monday

Good news, Colby's counts are recovering.
-hemoglobin up to their all time high-10.6
-platelets normal (wait a minute, did I say normal?) --374,000
-white count 2.3 > both getting better
-ANC 400 >
Colby is starting to not mind the mask, everyone ask him if he is a doctor.. he finds this amusing.
Well it seems for every bit of good news, there is usually some not so good news. We were informed sadly that Cameron was not a matched donor (3/6). But the doctors feel there are a few good matches in the bone marrow registry. The only thing is now, cure rate decreases from 50% to 30% with an unrelated donor(we will take any percent they give us).
God Bless You All
Laura

February 2, 2002 Saturday

Happy Groundhog Day,

This is our 2nd day home and things are as usual. Colby and Cameron are still battling over toys. Colby is scheduled for his second round of chemo in four days. I am finding it very difficult to fit our life into a week at home. Jack has been burning the candle at both ends. Please pray for him to stay strong. He is such a soft hearted person and the emotional stress is really difficult for him. He has been the solid foundation of our family. I love you Babe!!!
The boys have enjoyed all the company and toys that they are still receiving. They will be having their birthdays soon. There is nothing left to buy them so Jack and I are racking our brains on a special gift.

Laura

January 31, 2002 Thursday

Finally, we are home! Cameron thrilled that Mommy and Colby are home. The boys went right back to their normal routine, playing, running, laughing, and of course fighting over toys(it is nice to be home).
Hopefully this will be an uneventful week as we prepare for Colby's 2nd round of chemo scheduled for February 6, 2002.
Keep your fingers crossed
Laura

January 29, 2002 Tuesday

Fever down and so is his hemoglobin 7.1, so he will be transfused. He has done very well with all the changes in his life. He is very accepting of procedures and actually loves coming to the hospital. Pretty much an uneventful day. They will recheck labs in am. Hang in there Jack we will be coming home in a day or two.
Laura

January 28, 2002 Monday

Three days since the fingernail injury and here we are in CHP with fever of 103.2F. Treatment consist of IV fortaz and vancomycin after cultures were drawn from his broviac. Suspect these will be ok. The fever source most likely from finger even though it looks clean. ANC now 0.
Colby's appetite has diminished. His weight has been fluctuating between 14.3kg--14.9kg.
Laura

January 25, 2002 Friday

Well the chemo is still destroying cells.
-hemoglobin 7.0
-platelets 16,000(so far this is the lowest)
-white count 1.2
-anc 216
If you have been following the journal you know what this means....but guess what- there is more--- I was awaken from a hour sleep after working night shift when Colby fell off his bike and ripped his fingernail completely off. I was surprised we were able to control the bleeding with his platelets being so low and having an anc of only 216 caused great concern with possible source of
infection. He vowed he would never ride his bike again.
A visit to CHP (8 north) for blood and platelet transfusion was tolerated well. The only down side was Colby had to stay in his room during the transfusion. Sorry Colby, no playroom tonight. The finger was looked at by the doctor and no new orders at this time.
A much deserved appreciation for the staff at Pandacare daycare (Mindy, Heather, Aunt Lynda, and Grandma Mae) for keeping things together while I have been preoccupied. I love you girls and Colby and Cameron love & miss you all very much.

Another late night
Laura

January 23,2002 Wednesday

This clinic visit would be preceded by the entire family having labs to determine DNA blueprints and to determine if Cameron is a matched sibling. Colby was excited because this time he didn't get a needle stick. He offered support for Jack as he had his venipuncture. He sat on his lap and guided him through the procedure. Cameron on the other hand sat on my lap with big tears rolling down his face and told the phlebotomist "you stop that, you are hurting me" but he never tried to move his arm. What brave little boys.
At the clinic, Colby's hemoglobin at 7.7; platelets up to 35,000; white count hanging low at 1.7; anc 500 (time to where a mask). The staff got a taste of the boys being boys. I'm sure they were glad to see us leave.

Laura

January 21, 2002 Monday

Colby had labs drawn this am and as expected he required platelet and blood transfusion at the clinic.
-hemoglobin fell from 8.1 to 6.7
-platelets dropped from 26,000 to 20,000
-white count from 2.7 to 1.9
-anc(the cells that protect him from infection) are at there all time low--836.
Nurse Anne(a nurse at the clinic) has been wonderful with Colby. She allows him to paint her arm with brown soap(betadine) and repeatedly give her shots with the syringes she gave him to play with during his platelet transfusion. The clinic closes at 5:30pm so we will go and visit the nurses on 8 north for his blood transfusion.
Colby charmed Gina from the admissions office. She said since she was to old for him--she would marry him in heaven. I thought that was so sweet. Colby blushed and talked about it for an hour during his transfusion. Finally he took a nap and I was sure to follow. Jack was waiting for his family to return home safely(he is such a wonderful man).

We are overwhelmed by the support and love we have received. The boys are getting spoiled by all the new toys. The amount of emotional support and prayers have helped to give us strength and courage to get through each day.

Colby, Cameron, Jack & Laura

January 20,2002 Sunday

YEAH....Colby's eyes are better after a few days of drops and ointment. What an experience. He looks quite pale(counts probably low) but you would not beleive how active he is. He has been occupied with friends and family while I've been occupied with major decisions about my job.
Today I say goodbye to all my coworkers in the OR after only 7 months. Many thanks to all of you for your guidence during my orientation. It has been great working with you all. I will miss you. I will keep in touch.
On the other hand, I am warmly welcomed by the ICU staff where I have worked for 8 yrs. Thanks for having me.
A special thanks to Linda and Darlene (directors) for the smooth transition between the two units.
This was my first night back to work since January 4 , when Colby was diagnosed with JMML. It went well and it took my mind off of things briefly.
Laura

January 17,2002 Thursday

Colby has been home for 2 days now. He was having so much fun playing and running around the house yesterday with Cameron. He is very proud of his super hero broviac catheter. He has been doing all the lab draws and flushes that are required. He learns fast. The home health nurse came to collect his specimen and to deliver it to the lab. We waited patiently for results. He has encountered some discomfort with his eyes. We sat with warm clothes on them all morning. By 11:00am he developed low grade temperature 99F. Just then the phone rang. It was the clinic giving us orders to come as soon as possible.
We made arrangements for Cameron to go to Grandma's and started on the road to Pittsburgh. Colby could not even open his eyes. I felt so bad for him. He was irritable which was understandable and I was glad when he fell asleep in the car.
We arrived at the clinic 1/2hr late. His counts: hemoglobin 8.1; white count dropped from 18k to 2.7k(this was expected after chemo) platelets 26k which required transfusion. He just had a platelet transfusion two days ago when platelet count was 25k.
He was diagnosed with conjunctivitis which is very common side effect of his chemo meds. Treatment would include hypo tears and lacrilube oint(oh no,more eye drops;remember how he hated the drops while he was in the hospital)
We finally got home around 8:00pm that evening.

Laura

January 15, 2002 Tuesday

Hello, (going home)
We will be going home today after a platelet transfusion. WBC 18k; plts 25k; and hgb came up to 9.4 with the blood transfusion yesterday. Colby looks great!! As for Jack and I, that goes without saying. Grandma, Happy, and Aunt Lynda have kept Cameron occupied but the reunion will be exciting.
Glad to be going home
Jack and Laura

January 14, 2002 Monday

Hello, Chemo day 5
Colby is doing well. His Hgb took a drop to 6.8, Plts 34k, WBC 24.3k. He received his first Red Blood Cell (RBC) transfusion today. You would not know his counts were this low by his high energy level. A visit from the Halbrooks was very entertaining and Colby,for the first time actually became "tired".
Always praying
Laura and Jack

January 13, 2002 Sunday

Hello, Chemo day 4
Colby and Jack are having a wonderful day with the exception of, yes you guessed it, the medication/eye drops. I'm sort of releived that I'm not the only one that deals with the hour or so of bargining. His famous quotes are " this is the deal or no that's not the deal". It does provide some humor.
Colby had a lot of visitors today as well as a lot of gifts and cards. I think he still believes it is Christmas. Thanks Aunt Dee,Aunt Diane, Uncle Bob, Tammie and Taylor for providing such entertainment.
Lots of love to all
Laura and Jack

January 12, 2002 Saturday

Hi everyone, Chemo day 3
Well, just as expected the chemo has brought Colby's counts down. Hgb 7.8, Plts 48k, WBC 58.3k. All still above transfusion limits. He tolerated his chemo very well with the help of phenergan. He actually got to sleep in this am until 9:30am. He ate 2 bowls of cereal and was ready to play. Aunt Marlene found us in the playroom(this is where we spend most of our time). A silly dressup with Mr. Potato Head provided a time of laughter.
His appetite is typical for his age, so no concerns at this time. He is still drinking well.
When Daddy arrived his eyes twinkled like little stars. Daddy would spend the night while I travel home to see Cameron.
I would like to give a special thanks to everyone at The Uniontown Hospital (where I work) for being so understanding and flexible during this difficult time. You all have gone above and beyond. It is so reassuring to have such wonderful people to work with.
Thanks for your continuing support and prayers

Laura and Jack

January 11, 2002 Friday

Hello, Chemo day 2
Colby was awaken by vomiting at 7:00am. He finially got relief after receiving phenergan IV. By 10:00am he was eating cereal. He enjoyed his time with the Child Life Specialist, Gail. It is like being at daycare again. He paints and makes crafts and of course, he plays with every toy in the room. As the day went on his energy level did diminish somewhat. His main concern was when his friends were coming to see him. His room is now filled with balloons stuffed animals and many get well cards.
Thanks everyone. Your kindness and words of encouragement are very much appreciated.
A visit from Mackenzie(his playmate from daycare) and her parents, Paula and Scot made a world of difference. He was now full of energy again. Aunt Lynda, Uncle Bill and cousin BJ brought Cameron to visit. What a reunion. Cameron was Colby's shadow. I'm sure he really missed him. This was the longest they have ever been separated. Colby became very tired after about 1 1/2hrs.
Still having some difficulty getting Colby to take his oral meds and eye drops(can't blame him).

Laura

January 10, 2002 Thursday

Colby's plan for treatment would be, IV chemo for 5 days; recovery phase; 5 days of IV chemo; recovery phase; then bone marrow transplant (BMT). He received Ara-C and Fludarabine IV, and cis-retinoic acid orally. All with side effects of course. The most common being nauaea and vomiting. He would also receive decadron eye drops every 6 hrs because the Ara-c is excreted through the eyes and can cause severe dryness which would lead to conjunctivitis. He was premedicated with antiemetic called Kytril. Chemo was started at night and things went well. He is still full of engery and just wants to play. He hasn't even complained of discomfort at broviac site.
Many thanks to all of our friends and family for their support and prayers.
Laura

January 9,2002 Wednesday

Hello everyone,
This is our first "CLINIC" day. It started off with height, weight, vital signs. Then we were guided to our exam room. The nurse came in to draw labs. Colby did put up a fight initially. While we waited for the results, Colby was entertained by drawing on the table paper and playing with tongue blades. We were then seen by the doctors. His spleen and liver are still enlarged but less abdominal distention and petechae. WBC 84k, Hgb 9.2, Plts 42k. Labs were acceptable but he would still receive his first PLATELET transfusion prior to insertion of the broviac catheter.
We walked across the street to CHP to the admission office then to our room on 8 North.
Colby rode down to the interventional radiology dept on a stretcher. The room and the equipment were very large and scary at first. We told Colby these were robots that would be moving about in the room. This was great, it did releive some of his fear because now it became a big toy. The staff was great. They allowed him to operate the table while they were setting up. Full of energy, the staff knew they had a challenge on their hands. Needless to say Colby went to the recovery room after the procedure to wake up from the anesthesia. Everything went well. We told Colby he was now a "super hero" and this meant no more needle sticks. We went back to the room to get some sleep because tomorrow he would start his first round of chemotherapy.
Tired,
Jack and Laura

January 7, 2002 Monday

It was nice to be HOME. Cameron welcomed us with open arms. This was the first time he has ever slept away from home. Thanks Grandma and Happy(Grandpap) for taking such good care of him. Colby enjoyed being home with all his favorite toys. Labs drawn today. Hemoglobin 9.3, WBC 73.4k, and platelets 39k. No transfusions required.
It has been difficult for us to discuss Colby's diagnosis of cancer with family and friends. Thanks to all for your kind and comforting thoughts and prayers.
Laura

January 6, 2002

What a weekend!!! The staff at Childrens Hospital of Pittsburgh (CHP) have been wonderful at comforting and informing us about our future plans. Colby slept well last night with his mommy and daddy at his bedside. He gets a little irritable at times because he just wants to play. We will be discharged today so we can prepare to be admitted on Wednesday January 9, 2002 at which time Colby will have a broviac catheter (central line) placed.
Jack and Laura

January 5,2002

Today Colby is scheduled for a bone marrow biopsy to make a definite diagnosis for JMML. He would be sedated, so they thought. Colby stayed awake throughout the entire procedure. Even with tears rolling down his face, he did not move from his fetal position. What a trooper. The procedure was done in his room on a stretcher. His counts are even lower now. He has developed petechae on his face which look like freckles. The bone marrow slides were reviewed by his doctors and the pathologist. We would have to wait 5-7 days for diagnosis from the bone marrow. His IV fluid rate was decreased from 200cc/hr to 50cc/hr.

January 5,2002

Today Colby is scheduled for a bone marrow biopsy to make a definite diagnosis for JMML. He would be sedated, so they thought. Colby stayed awake throughout the entire procedure. Even with tears rolling down his face, he did not move from his fetal position. What a trooper. The procedure was done in his room on a stretcher. His counts are even lower now. He has developed petechae on his face which look like freckles. The bone marrow slides were reviewed by his doctors and the pathologist. We would have to wait 5-7 days for diagnosis from the bone marrow. His IV fluid rate was decreased from 200cc/hr to 50cc/hr.

January 4, 2002

This is the day our son's life changed forever. Colby's symptoms as mentioned were followed up by a pediatric visit. During the examination the doctor showed much concern with her findings. She left the room and returned with devistating news. Our son was to go to Childrens Hospital of Pittsburgh (CHP) immediately. She told us to prepare for admission tonight. I called Jack(my husband) at his work and told him the news. The trip to Pittsburgh was the longest ride I have ever taken (at least it felt like it). In the Emergency Room we were greeted by the pediatrician. Colby had to have blood draws and IV fluid started. WBC 74,100 (normal 5000-17,000),hemoglobin 10.3(normal 11.5-13.5), platelets 49,000(normal 156,000-369,000). After initial treatment in the ER we were sent to the 9th floor. He was to have nothing by mouth (NPO) so a bone marrow biopsy could be done in the am. By morning we were transfered to the CANCER floor, 8 north. Colby was pleasant and just wanted to play. Our tears continued despite Colby saying "happy faces, don't be sad." I wonder what thoughts went through his mind?

Scared
Laura and Jack

Monday, March 11, 2002 at 06:08 PM (CST)

Colby was diagnosed with JMML(Juvenile Myelomonocytic Leukemia) January 4, 2002. We suspected leukemia once before in October of 2000 for various symptoms, but he was cleared and said to have mononucleosis. At that time we followed with the hematology/oncology clinic in Pittsburgh for a few months. Colby's symptoms improved and his blood tests returned to near normal. He continued to have unexplained headaches, tired legs, night sweats, just below normal platelet counts and his spleen was always palpated on physical exam. On his 3 yr old exam, his symptoms continued intermittently, but nothing solid to pinpoint any traces of cancer. It wasn't until the end of December 2001 that he started having obvious symptoms. These included abdominal distention, abnormal bruising, decrease energy level, and petechiae (small blood vessels that bleed under the skin)on his abdomin. Hence, the beginning of the JMML battle. JMML is a rare childhood cancer and is not clearly understood. Conventional therapies(chemotherapy and radiation) do not cure the disease. The only chance of cure is through Bone Marrow Transplant.
I started this journal just before transplant but I will try and give dated history leading up to this date.