Ruby is a perfect match for bone marrow transplant!!! I am so excited I really wish I would have saved her cord blood but oh well. They are still unsure if they will use her because of her age and size. Its still a wait and see situation. We need to see how well she is growing and how long it takes him to get into remission and for his counts to recover. But a sibling match is the very best case scenario. As long as she is healthy I will push to use her. I hope the doctors feel the same way! Finally some good news!
There have been SOOO many people who have done so much for us that I can not keep up on thank you cards. Please do not feel offended if you have not received one and please know we are deeply grateful for everything everyone has done. We also want to say a special thank you to our friends the Smarts. They came over at a moments notice to take pictures of our family before Critter was admitted and as you can see they did an awesome job! ( my eyes don't even look red!) Also a special thanks to the families that did the 12 days of christmas for us. We were so excited every night to see what we would get. All I can say is they spent way too much money and gave us some really awesome stuff. Thank you to everyone who has brought or sent gifts, everyone who has taken my children, everyone who has made concerned phone calls and offered dinners. We have so much support I almost feel bad for the other cancer patients here because I know we have the best friends, families and neighbors! We know our burdens are light because there are so many people helping us bear them. Thank you for all your faith and prayers. We strongly believe that it was the faith of all those around us that saved Critter last time and request your faith on his behalf again this time. Thank you to everyone for everything you have done for me personally and my family. I have long ago realized I will never be able to repay everyone but I do hope you know everything is appreciated. THANK YOU!
Well we shaved Christmas eve. Everything was covered in hair. Jason could hardly wait for me and the boys to get up to the hospital. Critter was actually excited. I think he was tired of eating hair. He still rubs his head and says "new hair cut." We always have fondue on xmas eve so we did it in the hospital this year. It was fine the boys enjoyed it but Critter put everything in his mouth and spit it out. It's like it has a sour taste. He didn't eat anything and eventually fell asleep on the floor.
Christmas morning the boys and I went up to the hospital and opened presents. Luke and Dallin had fun and thought it was great but Critter just wasn't feeling great. I opened his presents for him and he played with legos for a little bit. This picture is all the boys with their legos! Then he layed down in the middle of his legos and dozed in and out. So we decided it was time to pack up the other kids and go. When Jason left with the other three kids Critter realized that they were all going home. He started crying saying he wanted to go home. This was the first time he really wanted to go. He has talked about going outside but we can usually distract him. After all his new stuff he got for christmas he just wanted to go home. All I have to say is I hope next christmas is better.
As for his health...well he still isn't eating so we are getting TPN through his central line, he hasn't thrown up in a few days so I think they will try an NG tube again tomorrow. He hasn't had fevers in a few days but I think he just still feels crappy. He spends a lot of time sleeping and just doesn't feel like doing much of anything. We are hoping when his counts recover he will feel better and return to the happy Critter we used to know.
Well Christmas time at PCMC is NEVER boring. Everyday we have received little bags of stuff. I look out my window everyday and see truck loads being unloaded onto big carts and wheeled into the hospital. This is what we have seen the last few days.
I don't know if you can see it but this is the view from our window. The two vans down there say KJAZZ and FOX13 News.
These ones say Channel 5 News and Channel 2 News.
They were here to film this...
Really cool ice sculptures of Santa and his reindeer! They are awesome!
Kneaders Bakery fed the parents lunch two days ago...
2 Jazz players and 2 Jazz dancers came by yesterday and today......I don't know if you can see him but yep that's David Archeleta waving at us through our window. He stuck his head in and wished us all a Merry Christmas. The nurses said they had some of the mothers freaking out but the kids were cool with him.
As for Critter...he has thrown up his feeding tube two more times and has acquired a nasty infection. So between puking and running really high fevers he sleeps mostly. They have decided to keep his NG tube out for right now and run TPN (broken down proteins that go straight into his central line) to give him nutrition. We are hoping his appetite will return with his cell counts. For right now all his wants is coke. And I don't care what people think I give it to him. He will sip on one for a few hours and just before its all gone he throws it up. The docs have said even though he is on antibiotics it will probably be another day or two before he starts to feel better. I hope he feels a little better for christmas. And the next post will be a head shaving! He woke up this morning in a pile of hair. Its all over everything so we will be shaving very soon!
Well we woke up really happy with an awesome hair do! Actually I took this picture a few days ago after a nap but I thought it was really funny. But we did wake up happy and after a shower and a try at breakfast we were visited by Santa Clause!So our day really did start out good. Then they sent the ENT doc to check his ear. It has been draining some bloody discharge and they can't get rid of it so we pinned him down and they scraped and suctioned his ear out. They took a culture of it and by tomorrow we should be starting some new antibiotics to try to help but right now he is just on one oral antibiotic and ear drops that he hates. He was mad but it was over with and I held him and he felt better.
Then they weighed him. He has not been eating much and I guess the only one gaining weigh is me (I couldn't let all of the root beer float go to waste!) Anyway Critter has lost a little over 2 pounds since we have been here and considering he only weighs 30 pounds to begin with its a significant loss. So they decided to put in a Nasal Gastric tube (NG tube). It goes in his nose right into his stomach and they run feedings on a pump at night. This was kinda my biggest fear last time just because I was afraid he would just pull it out and surprisingly he didn't. But putting the tube in was horrible! I've placed a few of these myself on babies and watched a million others placed but never on a 2year old and never MY child. I held him down while he gagged and coughed and he kept saying "mommy no" in the sweetest little voice. Then he just cried and felt it for a while and said his nose hurt. I held it together until the nurses left the room then I started crying. Sometimes watching your child go through this stuff just plain sucks! After he settled down and took a little nap we got him to drink some juice and eat some chex mix. I sat down to write this post and he started throwing up and of course threw up the tube. So after a shower and complete bed change we did it all over again. I do have to say the second time was a little better because they drugged him before (on my request)but it still took him a little time to settle down and he fell asleep with his finger up his nose so its just like home. The poor guy has been tortured today. I hope tomorrow is better.
Well we met with the Bone Marrow Team today to discuss the transplant. We have had so many wonderful people who have offered to donate bone marrow for Critter. I am so humbled by how many people would donate their own bone marrow for my son. Just typing this brings tears to my eyes. I asked the bone marrow team about having other people tested and they said people can be tested and put on a national registry if they would like but the don't do specific testing just for Critter. They have already input his specifics into the registry and we should be receiving news on if there is a match on the registry by next week. They will match 10 different factors so there can be a "perfect match" which is what they are hoping to find or a 9 out of 10 match. In rare cases they have done something like a 7 out of 10 match but they prefer a closer match.
And then there is Ruby. We are still waiting to see if she is a match for Critter. If she is they will seriously consider using her bone marrow. Ruby has been our ray of sunlight through this. We have been able to bring her up to stay with us during the day and then send her home at night. Critter loves having her up here. He asks to hold her constantly. He kisses her and helps me feed her. They are so cute together and she is the perfect baby. I put her in her vibrating chair the other day while Critter got his dressing changed (this takes 3 people. 2 holding him down and 1to change the dressing. He screams the whole time) and she drifted off to sleep sucking her thumb in her chair. I love having her up here with me but after meeting with the bone marrow team today we realized she will not be able to come up here during that time. We learned a lot today about bone marrow transplants and I could type 5 pages on it but we will break it down into post as we go. All I can say is its going to make the last cancer treatment look like a cake walk. We have about a 45% chance of everything working. We are trying hard to stay positive and have heard many success stories that give us hope. We know that this is out of our hands now and we must rely on the Lord. We have been so blessed and protected in our lives we hope our prayers will be answered again.
Well here we are again. Critter is on day 5 of 6 days of chemo. He has done amazingly well. He is happy and jumping around the room. In fact this picture is from today. He was jumping on the bed (hospital beds don't have springs and so are not very good for jumping) and broke his IV line. We keep it safety pinned to his shirt so it broke the IV tubing instead of his central line. (Whew!) I looked over to see his IV line filled with blood and leaking on his bed. But IV tubing is an easy fix. We watch Tangled (he calls it tangles) at least once a day and many other movies. We always start the day with some Mickey Mouse Club House and move on from there. By night time we build "towers" with Lincoln Logs and practice shooting people on TV and the techs with Nerf guns.
It really is better than last time because I can leave the room to get food, do laundry or go to the parent cart. Before he had to be asleep for me to leave but now I can get him interested in a movie or sitting down somewhere safe and run out for a minute. He will still run off without thinking about his IV line so we are still chasing him but at least I can shower while he is awake. All in all he is doing very well. We are so thankful for all our wonderful family and friends that immediately started taking my kids and caring for my family. Everyone is so amazing. The Lord has sent so many angels to strengthen us when ever we need it. We are so blessed.
On Friday we started all over again. We know we have AML again but we wont find out the specific type for another week. We have been admitted to the hospital and started Chemo at 2 am Friday night. There are a few differences this time; we luckily have caught it very early and when they did his LP they found NO cancer cell in his spinal fluid, they have started Chemo but we don't know how many rounds we will actually have to do. They will do Chemo until he goes into complete remission(last time that was after the first round) and then as soon as we have a donor match then they will do the bone marrow transplant and then we will be done again. We have also realized that Critter is a completely different person since the last time we were here. He is in a bed now instead of a crib which for us is nice because when he just wants to be held we can lay in his bed with him instead of us sleeping in the chair holding him. He also knows what kinds of food he likes and can communicate it to us. Hopefully he will eat as good as he did last time and avoid the feeding tube. The downside is that he is allot bigger and harder to restrain for things like dressing changes and eye drops.
It has been 14 amazing months since we were discharged for the last time and we have loved every minute of it. It has been 14 months of going to the cabin, boating, camping, disneyland, parties, having a new baby and just being together as a family. Unfortunatley they say all good things must come to an end and this time is no different. Critter has relapsed. We have had our suspitions for the last few weeks and have been doing blood tests each week to be sure. Monday was the one we have been dreading. I wanted to post a few pics of what our healthy, happy little boy before we get into the bad stuff. I hope you enjoy them as much as we did.