Monday, June 29, 2009

Day +89: Very, Very Thankful for Yet Another Great Week

It's day +89 today and we could not feel more grateful for the progress that Max is making and for his current state of health! He continues to get stronger and more energetic everyday and his blood counts continue to get better and better all the time. The ANC or infection fighting white cell count that I was concerned about last week when I wrote has been showing some improvement. As of Friday it was up around 1100 which is almost normal (1500 is normal) and the doctor's were hoping that was a sign that maybe Max's body was already fixing the potential antibody issue that they thought might be occurring. Only time will tell for sure. We go in again tomorrow for a lab visit and will know where his ANC is sometime tomorrow afternoon. If it has continued to rise or stayed steady, the hope is that we will not have to do anything and the antibody issue that they thought may have existed will be resolved. I'll keep you posted. His red cells and platelets have remained stable at relatively good levels (considering he is still under immune suppression medication to help prevent graft vs. host disease) and that is a wonderful sign that Ellee's marrow is working as intended in his body.


We could not be more grateful for all of this. We have kept in touch with many of the families that we met while we were inpatient in the Bone Marrow Transplant (BMT) unit and a large portion of them are dealing with much, much worse at this point. Many of their children are struggling with engraftment of the donor marrow, viruses and other setbacks that have made the transplant process extremely difficult and unimaginably scary for all of them. We think of these families often and pray for them everyday, hoping that things will turn around for all of them and that they will soon be experiencing the healing that we have seen with Max. I truly believe that we have been brought through this process for a higher purpose and I believe that even more strongly when I realize over and over again how blessed we have been in this situation. It makes me determined to "pay it forward" in the future and I am contemplating the best ways to do this everyday. I know that I am going to do a couple of things regularly, once we are through the healing process a bit more and I am able to get out a little easier. I plan to donate blood and/or platelets as often as I can and I plan to make meals for the families in the BMT unit (I am currently trying to determine how to get this "legally" done on a regular basis). My eyes have been opened to a world that I never knew existed and I am forever changed by this experience and feel highly motivated to do something to help ease the suffering of so many others that I have seen.



With every passing day, Max's life gets closer and closer to the "normal" that we knew before. He has been playing with his small group of buddies often lately and totally enjoying it! I have included a picture from last Thursday of Max and Alex with their buddies, Raad and Giana from down the street and their cousin, Will. We have also been getting out quite a bit more often lately and it has felt so good to all of us! Last Friday we went up to West Chester (north of Cincy) to visit Matt's sister, Molly and her boys, Andrew and Jacob. It was such a treat to be able to get out of the house and play somewhere different, although I have to say that we all came home exhausted! It's so funny how something simple like that tires us all out these days. We used to do that without even thinking twice about it! Last Friday evening, the boys were surprised to learn that Uncle Patrick was home from the Bahamas! We enjoyed a wonderful, very normal feeling evening at my mom and dad's house with all the Sherwin family cousins (Heidi, my brother's wife and Susie, my brother's daughter were also in town from West Virginia). Saturday morning we headed up to the Farmers Market here in Anderson (our area of Cincy) to take in a benefit concert by Kevin Sharp (a county singer and cancer survivor) that donated money to the Children's Hospital Music Therapy program, which Max took part in while he was there and thoroughly enjoyed! We kept Max in the shade and had him wear his mask and stay back from the other people that were there. Not quite "normal" but, it was great to get out! Finally, we had a very busy day yesterday, Sunday. Max and Alex got to go to a birthday party for a friend of Max's at a local park and Max even did a little bit of scootering at the skate park there! Dad made sure to minimize his sun exposure and keep a mask on him the whole time but, he really enjoyed it. HUGE steps toward feeling "back to normal" for Maxer! In the afternoon, cousin Will came over and did the slip n'slide with the boys. Last night we went over to Matt's mom's for dinner to celebrate the engagement of Matt's sister, Sarah to her boyfriend, Ryan (Max, Alex and Ellee already call him "Uncle Ryan" but now it's official)! A very busy few days for us, to say the least! So, today we are taking it easy and having a nice relaxing movie watching afternoon! We all needed it! Max was really worn out last night and his body was telling him that he should slow down for a bit. His legs were quite sore but, his smile never stopped.



The little things that we took for granted before are so huge to us now. The new perspective that we have on life is wonderful and, again, we are just so grateful. We can't explain why we have been so blessed in this process, we can only be thankful for it. We intend to do all we can to remember these blessings and do our best to make a difference for others in the future.



Thanks for continuing in this marathon journey with us. More soon...



Peace and love,

Kristi (and Matt, Max, Alex and Ellee)

Sunday, June 21, 2009

Day +81: LeBron, Bengals, Birthdays and Blood Cells!

Day +81 and we're looking back on another great week overall. We got a huge surprise from my Aunt Laurie early in the week when my mom returned from a trip to Cleveland with a basketball signed by Max's favorite NBA player, LeBron James! You can see him with it in the first picture. He was thrilled, to say the least. Max and Alex have become HUGE NBA fans. They watched all the playoff games and have gotten into the habit of turning on ESPN first thing in the morning to get their "download" of the latest sports news each day. They think LeBron is amazing and Max dreams of some day attending a Cavs game and getting to see him playing in person. We have promised to make that happen once he is cleared by the doctors and allowed to go into public places. We have a growing list of wishes like this that we hope to be able to all enjoy together before long.


Matt and I also got out together again...absolutely amazing! Friday evening some friends from church invited us to attend the Taste of the NFL with them. It's a fundraiser for the Free Store Food Bank here in Cincinnati with the Bengals and about 25 of the areas finest restaurants. We took a football and a pennant for the boys and were able to gather tons of autographs from the players for them. I've included a couple of shots of Matt and I with some of them just for the fun of it. We had a nice time and had two extremely happy boys when we got home and showed them the autographed items that we were able to get for them. They were especially excited to see Ocho Cinco and Marvin Lewis's signatures!



After we got home Friday night, we had a very funny experience. About 2:45 am our power went out because some bad thunderstorms were in the area. Of course, the pitch darkness and the noise from the storms eventually woke up all three of the kids and we all huddled in our bed together with some candles burning in the room so that we could see a bit. Ellee thought it was a party! She was hysterical. When I told my mom the story she said, "you've gotta put this on the blog." Ellee has been learning about birthdays so, she thought the candles were birthday candles and just kept saying, over and over again, "candles...pretty...happy birthday" and huffing and puffing as if to blow them out! At one point she was singing "happy birthday" for all of us and, of course, the boys couldn't stop laughing. Needless to say, we were all up for about two hours enjoying our make-shift birthday party in bed in the middle of the night! We were so tired yesterday but, the memory of that night will last with us forever.

We took Max down to the hospital on Friday for his regular weekly Day Hospital visit. Overall, things remain good and he is progressing through the marathon transplant process very well. We do continue to have an issue with his white cells and ANC (his neutrafil count or count of real infection fighting white cells). The doctors do not seem too concerned and give me the impression that this is fairly normal in the course of the BMT recovery process and that, given time, it will work itself out. Essentially, they are beginning to believe that Max has some antibodies from the tiny bit of his immune system that remains (less than 3% of his blood cells are being produced by his marrow by measurement) that are killing Ellee's white cells right now. Over time, as Ellee's white cells mature into B and T-cells (the infection killers), they will overcome these antibodies and the problem will be solved. But, the question is, how long do you wait. It means that right now, Max's white cells are at extremely low levels again and thus, his ability to fight off germs is not good. There are other things that they can do to try to solve this issue more quickly, although they are "less conservative" in the terms of our Nurse Practitioner. They could reduce the amount of immune suppression medicine that they are giving Max (ie Cyclosporine) to try to allow Ellee's system to get stronger more quickly but, this would almost for sure cause Graft vs. Host for Max which can be an extremely dangerous complication of the BMT. There is also another medicine that they can use to essentially wipe out the antibodies that exist and are killing the white cells but, this would basically reset his immunity building again and we'd be starting from scratch. So, we are in a waiting game with this situation. The team is looking to Dr. Davies to make the call as to what to do and she was on vacation last week, something which she is very entitled to, considering that we know she works 10 - 12 hour days, day after day, in an effort to help as many kids as one person possibly can. So, we are practicing patience and not worrying while we wait to see what they will decide to do. In addition, we are re-energizing our commitment to keeping Max and his surroundings as clean and germ free as they possibly can be! We don't want to end up back in the hospital because of some little germ!


Matt's sister, Monica and her husband, Mark asked a good question last night that we thought might be on other people's minds. They asked how Max would build an immune system without being exposed to germs. The answer is that right now, Max doesn't have the basics that are required to have an immune system yet. He isn't even producing the necessary cells to be able to fight germs and create antibodies (ie immunities) yet. That's why we have to be so extremely careful and isolating right now for him. He probably would have a huge struggle still just to fight off the common cold. Once these cells begin to be produced and mature enough, then he will need to rebuild all of the immunities that he previously had. It will probably be about a year from the transplant (so April 1, 2010) before Max's system is functioning well enough (ie producing the right cells that are mature enough) to be exposed to germs and start rebuilding his prior immunities. Thus, why he may not return to school at all next year and why he won't be able to return to stores, restaurants, church, etc for some time yet. Once he is able to "return to normal life", he will likely catch a lot of germs and be sick often while he develops the antibodies against these viruses, etc. again. He will also spend that next year (roughly April 2010 to April 2011) being re-immunized as all of his former immunizations are also gone now.


Despite these ongoing challenges, life is good. Max is very happy and feeling great. He got to see both sets of his cousins (Andrew and Jacob and Will and Ben) this week as well as his good buddy, Raad. He is doing very well with his home schooling and making great progress in catching up on what he missed in first grade. We are beginning to work with the school district on plans to continue the home schooling next year. We received a packet of information from the Make a Wish foundation last week and they should be coming out soon to interview Max and start putting a fabulous wish granting together for him. We'll keep you all posted on that excitement also!


Ellee and Alex are doing well too. Alex definitely struggles with the lower key lifestyle that we have right now. Any four year old with an abundance of energy would! We are trying to help him out by keeping him involved in some activities that lessen the chance for germ catching. He started t-ball yesterday morning and really enjoyed that. Our families are helping also by trying to "get him out" here and there for playdates, etc. Ellee and I went shopping together for the first time in probably six months yesterday! I took her to Target and the grocery with me on my errands and we had a nice, girly time. I have figured out ways to keep her safe in the stores...I either use a stroller or a cart cover and don't let her touch anything. We kept our distance from any kids too, just in case they were coughing or sneezing! It's so fun to be a germ-a-phobe!


Life post-bone marrow transplant is good, although tough. We are savoring every minute as much as we can and doing our best to "live in the moment." A fellow BMT mom sent me the following quote and we try to remember this all the time: One day at a time is enough. Don't look back and grieve the past; it's gone. Don't be troubled with the future, it has not yet come. Live in the present and make it so beautiful it will be worth remembering.


More from the Meyer homestead soon...for now, thanks for your continued prayers, love and support. Happy Fathers Day to all you dad's and grandpa's out there!


Love,
Kristi (and Matt, Max, Alex and Ellee)

Monday, June 15, 2009

Day +75: Another Great Week











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

Day +68: A Wonderful Weekend

video



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

Day +62, Continued: A Touching Tribute From Our Spartan Buddies

Some of my best buddies from Spartan Country did something amazing in Max's honor today. They held a blood drive up in Michigan! Here's their note to him and some pictures of the event that they took. Thanks, ladies! It means a lot to know that we have friends rooting for Max all the way up there!


Hi Max!

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.

Love,

Amanda, Sarah, Kim, Becky, Karen and Krista

Day +62: Back on Track!

We headed down to the hospital this morning for Max's weekly Tuesday check-up with the outpatient BMT team down there and things are back on track...thank God! Max's ANC which had dipped dramatically down last week to 30 is now WAY back up to 9250! Thus, his counts definitely seem to be recovering! It appears that the gancyclovir medication that was being used to fight his CMV (the virus that was growing strength in his body) is the culprit of the temporary decrease in levels and that his marrow (or should I say Ellee's ;) ) is now recovering, with the help of the "liquid gold" GCSF. All in all, super great, wonderful news!

The doctors spent some time talking with Max and checking him out and they gave him a thumbs up. We did have a few issues with one of the two lines that make up his "central line" and they drew some more cultures from the one to be sure there is no infection in it. We'll know more on Friday but as of now, he feels great and doesn't seem to have any issues.

Just wanted to share the good news today. It certainly eased my mind to see those white cell levels again. Last week was scary and it means a lot to see that Max is back on track and back on his healing path!


Other than that news, things are quiet around here. Daddy broke down over the weekend and bought Max Playstation 3...the only thing he has been asking for the last few weeks. Go through all this and then spend three more days in the hospital with a wonderful attitude and your parents will get you just about anything...what suckers! The boys are definitely enjoying playing that, as well as Matt and I!

We'll write more soon. Thanks for your continued support.



Love,

Kristi (and Matt, Max, Alex and Ellee)