Monday, June 29, 2009
Sunday, June 21, 2009
Monday, June 15, 2009
Day +75 (WOW!) and all is well. I guess when things are going well, I tend to go a long time without updating the blog...sorry! We've had a relatively busy and fun week. A few ups and downs along the way but overall a good week again. We are really starting to figure out some things that we can do and are enjoying being outside a lot in the shade and on overcast days. It certainly helps that it is summer and that we can be outdoors. I don't worry so much about the germs that way. The pictures are from some of this creative outdoor fun...first one is of the kids all in some basketball jerseys getting ready to go swinging and the second two are of a little popsicle party we had in the garage one afternoon.
Max has played quite a bit with one of his best buddies, Raad, our neighbor from down the street. Raad is 12 and is such a darling and cool kid. He, Max and Alex have a ball together. Raad's mom has been super about being sure that Raad is healthy and he is wonderful about washing his hands the second he gets here and taking his shoes off at the door (those are our two rules for entry into the house). Because Raad is a bit older too, we don't have to worry quite as much about germs since older kids tend not to pick everything up. So, Max and Alex have really enjoyed having Raad over a couple of times lately and are looking forward to spending more time with him soon.
Max started tutoring with his teacher last Wednesday and has been enjoying it so far. I can't tell you how great it has felt to have him working on school work again. The tiny bit of "normalcy" that it has brought into the house is really refreshing. It gives us all some time away from the tv and video games and allows us to think about the future a little bit. It makes me feel like Max is getting back on track and taking steps toward his future life with all this behind him and that feels amazing!
We had another small milestone this week...believe it or not, Matt and I got out on Saturday night together, just the two of us! It's been a long time! We went to church together (which hadn't happened since Ash Wednesday) and then went out to dinner! It was quite a treat. Gaga (Matt's mom) took the kids while we were out and they enjoyed their evening going through the Wendy's drive thru and swinging in the backyard. Sunday morning Aunt Sarah and "Uncle" Ryan came over for a visit and the kids had a ball playing with them. "Uncle" Ryan can hang quite well with the boys on Playstation 3 and they both give them a run for their money on the basement basketball court. Ellee loves playing with Aunt Sarah too. We also visited with my mom and dad this weekend and saw Aunt Kimmy and cousin Audrey today. So, we are keeping busy with our families and it really helps to have the company!
Although things overall are going well, we all continue to have our share of challenges and ups and downs along this journey. Our nurse practitioner called me last Tuesday after our visit to the hospital that morning to say that Max's ANC was down to 1300 again. This wasn't terrible but, was quite a bit lower than it had been again and caused me some concern. In addition, his CMV (the virus we have been battling post transplant) level was rising again. I spent Tuesday, Wednesday and Thursday worrying about those two levels and even losing some sleep! Then on Thursday morning, she called again to say that his engraftment level had fallen a bit to 96.8%. This is a measure of the percentage of blood cells that are being produced by Ellee's marrow in Max's body. His levels had been in the 98 and 99% range since the transplant so, again, I was concerned and lost more sleep over things Thursday night...even though I told myself not to worry! Of course, when we went to the hospital on Friday morning for our Day Hospital visit and actually got to talk to Dr. Davies, none of it was an issue! His ANC had risen back up to 1500 all on its own, his CMV had fallen back down and Dr. Davies looked me right in the eyes and said "an engraftment level of 96.8% is great!" All that worry for naught!!!! And I just knew it would be. But, Dr. Davies again proved how wonderful she is. I told her that I had been worrying over all this and she responded that it is my job as Max's mom to worry about him, especially in this situation. So, despite the fact that it has happened over and over again, I am going to continue to worry about him for no good reason...that is just what we mothers do! :)
Obviously, Max is doing very well overall. His numbers are good, he looks good, he feels good, his energy is increasing daily, his medicines are decreasing slowly, his hair is coming in on the top of his head (as well as many other places, thanks to the cyclosporine) and he is acting more and more like his old self all the time. It does Matt and I's hearts so good to see him act goofy at the dinner table or to hear him giggling about someone tuting or something like that. It's our Max coming back again more and more all the time and it is amazing to witness his transformation along this journey. The main challenge for Max now remains the more psychological and social aspect. He is dying to play with friends everyday! That's what he loves. He totally understands why he can't but, he still wants to do it...right now. We are doing our best to manage this with a small group. Essentially, we are only letting him play with his cousins (Andrew, Jacob, Will and Ben and Audrey, but she is really more of Ellee's playmate at only 2) and Raad. He loves all of these kids so, he is fine with narrowing things down like this but, he would like them to be here everyday, all day long or whenever he snaps his fingers and wants to play with someone. Obviously, that can't happen. They all have busy lives and full summers, like most 7, 8, 9 and 12 year olds. So, we are working with Aunt Molly, Aunt Monica and Raad's family to plan playdates whenever possible. He just loves it and everytime someone comes over he tells me, "mom, that just made my day!"
We are anxiously awaiting the homecoming of my brother, Patrick too. Max and Alex are absolute fans of fun, crazy, spontaneous Uncle Patrick so they can't wait to see him. He has been in the Bahamas for almost two years now and we haven't seen him in probably almost a year, at least! I can't remember right now how long it's been...a long time anyway. He is due home sometime later this month and that will be a real treat for the boys, as well as Uncle Patrick who has really been missing seeing them, especially given all that's gone on the last few months.
That's about it for things around the Meyer homestead. It's been a long journey to day +75 and we still have a long way to go but, things are going just about as well as they could be, I would say. We continue to thank all of you for your love, support and caring interest in Max and how all of us are doing in this marathon. We are beginning to sense the finish line ever so slightly and the taste of having this all behind us, however we know that we still have an enormous stretch of mileage before us. We still feel you all rooting us on and it really does make all the difference. Thanks.
Peace and love,
Kristi (and Matt, Max, Alex and Ellee)
Monday, June 8, 2009
We just enjoyed a wonderful, normal-ish weekend...at least as normal feeling as they can get these days! Max and his cousin and best buddy, Will, finally got the chance to get together to play on Friday night along with cousin Ben and Aunt Monica and Uncle Mark. It felt so good just to be able to hang out together and watch the kids play. They had a ball, as you can see in the video. The smiling and giggling never stopped the whole time they were together. They are dying to see each other again. I think the four of them would play together every minute of every day if possible!
Saturday was a busy day around here as Matt and his dad, Jake, cooked up a huge project with 7 helpers to try to grow grass in our backyard. They spread about 10 yards of soil and seeded it in hopes that we will finally get some grass to grow back there. Max still has to be extremely careful about the sun so having a nice shady area for him to play in the rest of the summer will be great. We are anxious to see little sprouts of green coming up through the straw!
Yesterday was great too. My sister, Aunt Kimmy, came over and we rigged up a little tent on the double stroller for Max and took the boys on a long walk around our local neighborhood. We all loved the fresh air and just being able to "get out" for a bit. The boys are definitely getting a bit cooped up in the house here 90% of the time so we are beginning to look for safe ways to get out here and there. Max still can't be around other kids, with the exception of one "very clean friend", as Dr. Davies put it, from time to time. So, between that and the sun issues, it's a bit hard to find places to go but, I'm working on it and trying to get creative.
Last evening, we headed over to my mom and dad's for dinner and had a great time. Aunt Kimmy and Uncle Benny were there as well as cousin Audrey so the girls had a ball playing this time! Ellee and Audrey just love each other and have barely seen each other in months so it was a real treat for them. Again, the smiles and giggles never stopped!
This morning we had more excitement in the neighborhood as our road was paved! You can tell things are a bit desperate when yourself and your three kids are sitting at your storm door watching a steam roller pave the road and just loving it! What entertainment...and right at our driveway! We met my dad out at the Cincinnati Nature Center for a brief walk in the woods at lunch time today which was also great. I absolutely need to get out into the woods often and it has been a long time for me. It was really rejuvenating just to smell the trees and experience the peacefulness of the forest. I hope we can do it again soon.
Although Max enjoyed every minute of all of this activity, it has worn him out! He finished his steroid last Monday and I have noticed a bit of a change in his energy level without that. He seems to tire a bit more easily and needs to take a few more breaks than normal, something that I would expect with everything he's been through. His body is working overtime right now to recover and get his new marrow clicking away normally so, it's no wonder he needs some extra down time. He is also still taking LOTS of medicines...8 pills in the morning and 11 at night! I included a picture of the bottles just for the fun of it. It's hard to believe when you see it! Some of the pills are huge too but, Max has become a champ at taking them, as with everything else!
So, overall, things are good. We are beginning to relax a teeny bit but are still concerned everyday with Max's health and progress, of course. We still have a long way to go but, we are really beginning to settle into our "new normal" and enjoy life this way. I did talk to Dr. Davies on Friday about Max's return to school and, at this point, we are planning for him to be home all of next year. He may be able to return earlier but, she suggested planning for the full year at home and then it will just be a bonus if he returns before that. I am fine with this and Max is too, so far. I am hoping that we will find other ways for him to be "safely social" with friends, etc so that he will not miss that part of going to school and being 7 and 8 years old. We are starting tutoring with his teacher from the first part of first grade on Wednesday. Max isn't exactly looking forward to it but, I know that once he adjusts to it, he is going to enjoy having something to do and learning new things. Dr. Davies remarked the other day that he is such a bright kid and has really picked up so much knowledge from this experience, much of which we don't even realize he has learned. She is certain that he will have no trouble catching up and keeping up with his peers and returning to Wilson right where he should be grade-wise.
Alex and Ellee are doing well too. Alex struggles sometimes with being home so much...he would like to be more active, of course but, he wants to be with Max, Ellee and I the most and he seems to understand why we can't play with a lot of other kids right now. He absolutely adores Max and wants only the best for him. He would pretty much put up with anything if it meant something good for his brother. Ellee is doing just fine as well. I joke that she has "virtual" music classes and playgroups with her videos of kids singing, Baby Einstein and Elmo. I know that she will really enjoy playing with other kids when that day comes but, in the meantime, she doesn't know the difference and is just fine playing here with her brothers and mommy.
We are headed down to the hospital in the morning for Max's weekly Tuesday check-up. I hope all continues to go as well as it has so far and that it will be uneventful and relatively short. I'll update again soon when I get a few quiet minutes and I'm not asleep! ;)
Thanks for your continued support, thoughts and prayers.
Peace and love,
Kristi (and Matt, Max, Alex and Ellee)
Tuesday, June 2, 2009
Your Mom and Dad’s friends up in Spartan country held a blood drive today in your name! We want you to know that we are thinking of you every day and are amazed at how strong you have been in the last several months. By having the blood drive and sharing your story it helped us remind others to give when they can and not to forget what those around you may be going through.
We are proud to have had many first time donors and others who hadn’t given in years.
We had a Red Cross bus here (see photo) and several volunteers. Sarah, Kim, and Becky were all able to come to the blood drive from out of town (see photo). Sarah made some wonderful cookies that were a huge hit with those that donated!
Becky’s daughter Heidi made some rainbow pictures as well (see photo). I wonder if this looks like the one spotted over your house?!
Keep sending us photos and updates, we love to hear how you are doing.
Amanda, Sarah, Kim, Becky, Karen and Krista