Wow it’s been almost a month since I posted. Time flies. Aiden’s ANC(immunity) were low again this week 460 so he is neutrapenic once again and we had to stop the chemo. He has 7 days left of this round. They will recheck labs on thursday and probably lower his dose. He seems to be tolerating it ok as far as nausea etc. The second week of this drug his ANC was 1600 so I thought we were in the clear then by the 3rd week it had dropped to 600 and now 460. His hemoglobin and platelets are back up and holding. We found out we don’t have to go to Omaha monthly. We went last month and they said they don’t really do anything that our pediatrician couldn’t do here in Kearney but we will still go every 3-6 months depending on what they decide. I did work one day last week just for a half a day while my mom stayed with Aiden. A half day wasn’t too traumatic and it was nice to get out of the house a little. I am also playing city league basketball once a week. I realized just how out of shape I really am.:) It’s good for Matt and Aiden to have that man time. Not much else to report. Holidays were good stayed home as it sounds like most people did due to the weather. We were just so thankful to be home with our son who is cancer free. We are thankful to our wonderful friends, family and communities who have supported us and gotten us through one of the toughest years of our lives thus far. This has really put things in perspective for us and taught us what it truly means to trust in God. Although our journey is far from over we are grateful for how well Aiden is doing after all he has been through. We go back for scans Feb 15th. Please continue to keep Aiden in your prayers and thankyou for carrying us and lifting us up in prayer. We love you all and may you have a blessed 2010.
An Aiden Update From Brooke: December 14, 2009 December 14, 2009
Aiden’s counts are still holding! ANC is 510, hemoglobin is up to 9.5 and platelets are 167. I really thought they would be alot lower but am very thankful!! He is still doing good! He has a little bit of a runny nose but that seems to be ongoing throughout this whole ordeal. He is full of energy and constantly on the go! After his appt this morning I had to stop at the grocery store which brings me alot of anxiety when his counts are low. He did great though he left his mask on and I left his mittens on so he couldn’t touch anything. There were probably only 3 or 4 other people in the store. We then had to stop at walmart and that was a little different. I thought we would just run in and get what I needed and get out. I couldn’t find it of course then we lost a mitten then we wanted to walk by ourselves and when I went to pay he laid on the floor and started throwing a fit. He did leave his mask on and I had alcohol gel with me of course but I think we will limit those trips unless absolutely necessary for now. We did get to see my great aunt Ruth while we were there so that was nice to see her! He now has a 7 day break until we start round 8. We are going to OMaha wed to see our pediatric oncologist there. Tonight I am going to a cookie/ornament exchange with girls from work. This weekend we will be going to St Paul for Matt’s family christmas but that is about all that’s going on with us for now. Thank you for following our journey and praying for Aiden! We love you all and may God bless you!
An Aiden Update From Brooke: December 10, 2009 December 10, 2009
We had labwork today. Aiden’s counts are just barely holding. His ANC is 517 (anything below 500 is considered no immunity and we have to stop the chemo)this is down from 660 on monday, hemoglobin is 8.3 it was 8.2 on monday, and his platelets are 137. We only have four more days on this cycle of chemo so St Jude is ok with just finishing it out and rechecking labs monday. He then has 7 days of NO Chemo before we start the next cycle. This will be one drug called erlotnib which is given for 28 days. This one can effect his counts but usually not as much as this last drug he was on. They are going to start giving him a prophylactic shot for RSV once a month throughout the flu season. Since his counts are so borderline we are still keeping him away from crowds and sickness as much as possible. It is so nice to be around family and friends again. We did make new friends that became our family in Memphis and we will forever think of them that way. However it is nice to be able to call the grandmas to come and stay with Aiden while I run to the store etc. Matt is back at work and I think he was ready to go back. I plan to go back in Jan. a couple days a week. If anyone knows of anyone who would be interested in coming to our house to watch Aiden a couple days a week please let me know! I don’t really know where to begin looking for someone. He still has his central line but we take care of his dressing and flushing it so there wouldn’t be anything to scary unless God forbid it would get pulled or something crazy like that. Anyway just thought I would advertise on here for starters. Thank you for still praying for Aiden and loving us!!
An Aiden Update From Brooke: December 9, 2009 December 9, 2009
We made it home! Sorry to leave everyone hanging we have just been enjoying our time at home and trying to find our new normal. Aiden has been doing well. We had to stop one of his chemo drugs for 7 days because his counts were dropping to much. His ANC was almost down to 0 again so we had to decrease his dose. He is on Cyclophosphamide and topotecan this 1st month. THey are both oral meds and he takes them pretty well. We have to wear gloves when giving it and for every diaper change. The cyclo is the one we had to stop but we restarted it on Monday as his counts had recovered slightly. Since it did affect his counts that much we now will have to go in twice a week for labwork. Next week we go to Omaha to meet with our Pediatric Oncologist there. His Hemoglobin is barely holding at 8.2 on monday hopefully we won’t have to get blood but I think it is heading in that direction. Matt went back to work monday and we are all doing pretty good. I would like to maybe start working a couple of days a week in Jan. Thanks for checking in us!
An Aiden Update From Brooke: Friday, November 20, 2009 November 24, 2009
NO cancer cells were found in the spinal fluid!! His hearing test did show a SLIGHT change with the high frequency sounds. This will not effect his everyday hearing or ability to speak however. Let me recap our week. Monday we had the day off. Tuesday we had lab and clinic starting at 1:00pm and his hemoglobin(7.0) and platelets(27) were low his ANC was creeping up very slowly (it has to be 2000 before we can discontinue his bone marrow stimulating shots) it was 1600. So we ended up having to get blood and platelets that day and didn’t leave the hospital until 9:45pm that night. It was a long day and we were a little surprised that his counts hadn’t recovered on there own yet. The last round of chemo he bounced right back from but the more you get the harder it is on the bone marrow. Wednesday we had to be at the hospital at 7am for the MRI so we were thankful that it was early since we couldn’t give him anything to eat or drink. Then when they were ready for him they wouldn’t let Matt go back. They said only one parent could come back to the pre-sedation area. This was new to us as every other time they have allowed both of us to go back. This is where they pre screen him for the MRI, sign consents, start fluid etc. Luckily Aiden was happy and I was able to keep him occupied while they did what they had to do, sometimes a challenge with one person. They let me stay in there until he was sedated and this was the first time I didn’t cry after I left the room! I was close though you would think by now it would just become routine. That afternoon after being sedated for 2+ hours they scheduled a speech and OT EVAL. OT said he was right on track but speech therapy said he may be slightly behind. She said at his age he should be saying 5-15 words (whinch he does)-I mean which (freudian slip). ha and he should be mimicking what we say and do which we also told her things he does. However when she was doing her eval trying to get him to say words etc he didn’t have alot to say to her. I believe he was still groggy from his MRI and it was nap time so what do you expect. Ok I will quit griping now. THursday we had to have his labs checked to make sure his platelets were high enough for them to do the LP. THey came back fine and his ANC was up to 4,000 so no more shots!! Today Matt’s parents will be here and Matt will go home on sunday to get some stuff done to the house before we come home. MAtt’s mom will stay with us. We are hoping to leave wed or thurs. We have to make sure his counts have recovered on there own before we can start his oral chemo. If they look good then we will start that on monday. He has a psych eval monday then I don’t think we should have to many appts. scheduled for the rest of the week. They will have to draw some lab work and that should be it. We can’t wait to come home!! Although I know this journey is far from over as they must remind us that the true test comes after he is off chemo and whether or not the tumor comes back I feel that I can breathe for a little while… at least until the next MRI. Thank you all for your love and prayers we are soooooo grateful to have such wonderful support!! We couldn’t have gotten through this without you! I’m sure we don’t even realize how many people are praying for Aiden and supporting us but please know we are truly humbled and in aww of the kindness and generosity we have experienced during this time. We will forever be changed by this and have learned so much along the way. May God bless each of you for your genuine kindness. We love you and thank you for loving us.
An Aiden Update From Brooke: Wednesday, November 18 November 19, 2009
Preliminary MRI report came back clear!! LP is tomorrow will update more later. Thank you for the prayers!!!!!!!!!!!!!!!!!!!!!!!!!!
An Aiden Update From Brooke: Friday, November 13 November 19, 2009
Aiden is doing well. We are officially done with IV chemo!! He made it through the last two rounds without getting a fever so we have enjoyed our extra time off from the hospital. Monday his ANC was 0 and he had to get platelets. By thursday his ANC was 600 already so no more mask!! We still have to give him GCSF shots until his counts reach 2000. He seemed to tolerate these last 2 rounds much better than the previous 4. They are different drugs so that may have something to do with it. His appetite has improved over the past few days. He is walking all over. Last week he got brave and started taking off by himself across his little play area. Now he has no fear!! He will walk all around the waiting room at the hospital and could care less if I was holding his hand or even anywhere near him:) I guess that extra time away from the hospital has given him a chance to practice more. His new word is kitty. He can tell us what a cow, duck and horse say. He loves books and still loves Mickey. He still has his little temper but maybe that has something to do with how he is feeling. We are sooo ready to come home! His MRI and lumbar puncture are next wed. so if they are both clear (please pray for this!!!) then we will be home in 2 weeks! Matt’s parents will be here next friday and Matt will go home on that sunday. His mom will stay with us and we will fly home thursday possibly. They want to get us started on the oral chemo and they have to draw some labs before we can leave but if all goes as planned we should be home on thanksgiving day. I can’t believe I’m even writing about going home. It seemed like this day would never come. I just pray that the scans are clear!! I know that Aiden is in God’s hands and He knows what is best for him. What ever happens He will be with us to see us through I jsut have to keep trusting Him. THank you for following us on this journey.
An Aiden Update From Brooke: Saturday, November 7 November 19, 2009
Aiden’s counts are close to 0. He has been more fussy today and tired. He had to get blood on wednesday and we don’t have to go back until monday for labs unless he gets a fever. We have just been hanging out in the apt. staying away from people. I disinfected everything yesterday we’ll see if we can stay out of the hospital… His MRI is the 18th so please pray for clear scans!!! I am tired of being surrounded by soo much bad news. It is exhausting. 2 more babies lost there fight within the last couple weeks and 2 more have relapsed with the news that there is nothing more St Jude can do for them both are only 2 years old. Our sweet neighbor Carissa found out her cancer is back and is everywhere after being in remission for 2 months. She is only 16. Please pray for these families and pray that we find a cure for this stinkin cancer. Please keep all St Jude kids in your prayers as there are far too many.
An Aiden Update From Brooke: Tuesday, November 3 November 19, 2009
Aiden is doing well. We finished our last round of IV chemo sunday. We are now just waiting for his counts to drop and come back up. It never really feels like he is done with the round until counts are back up and he is feeling good. Appetite is not the greatest but he is maintaining his weight. We go in tomorrow for labs and clinic and probably blood. MRI and lumbar puncture will be nov 17 or 19th can’t remember but during that week. Please pray for clear scans so we can come home. Thank you for loving us.
