A Picture is Worth a Thousand Words!

I can't think of anything else to say. We love you all....

Welcome to the Roller Coaster!

Ok, I did not post last week for a reason. We had a really bad scare. When Josh had his end of treatment MRI the results were mixed. No reoccurance of brain tumor or spinal tumors. That was very good. However, they found a bone in his lower spine that looked bad. He has been having some pain in that area in the last several weeks. We were told that it could be infection or tumor but the truth was that it looked like bone cancer. We spent a pretty panicky weekend. They told us that they were going to do a biopsy this week. On Monday a panel of doctors including 2 oncologists, 1 pediatric neuro-onclogist, 1 bone cancer oncologist, a pedatric orthopedic surgeon, and neuro-surgeon (he just thought it was interesting) met and duked it out. The opinions were varied but it was finally decided to do a pet-scan first to try and pin point any cancer. If cancer was there the biopsy and possible surgery would follow. We did the pet scan today and Thank God! no cancer. They now feel the bone may contain a hemanginomia (I hope I spelled that correctly). 2 of the doctors (guess which ones) still want to do the biopsy but the rest think we can do MRI's monthly and see if it remains stable. Surgery to remove it is risky because it is basicly a tangle of blood vessels and bleeding is possible. However if it grows that may become nessesary. Today we just don't care - I just keep saying "it is not cancer, it is not cancer". That is enough.

Now, on to my apology. Normally we would have shared this right away but we have a trip to see family coming up and we wanted this trip to be care free for Josh and everyone else. If it was a reoccurance or new cancer we did not want people treating him different. He misses seeing everyone and this trip is very important to him. Everything was so unsure we just figured that we should wait till we had more information. Also, so many people have expressed that they feel he will be fine now that treatment is over. We want it to be fine now. We want you to enjoy time with Josh now. Gordon and I will always have this cloud of worry to deal with but we want Joshua to live normally. That means we ride the roller coaster and we bear the fear. Not him, and while we need your support, we do not want you to live that way either. It becomes a balancing act for us. We are so grateful that this time it had a happy ending. We are so grateful to know that if it did not you would have been there immediately. Mostly we are grateful that for the next 30 days we can relax a little and try and find our new normal. The doctor wants us to start Josh on training to build up his bones and muscles that have been so weakened by the chemo so we will add that to his schedule. But at least we can rest a little too. Thank you for all you do, calls, prayers, and the many who sacrificed time and money to be here when we needed you most in the last year. I do not mind the roller coaster, as long as we are on it - that means one more day together and that is enough. We love you all so much.

The Last Day of Chemo

I can't put into words how I feel now. I thought I would add this video I have made to show the day. We played in the hospital gardens and then went into treatment. The music is by Jenny Phillips and the song is called Man of Miracles. Today is a miracle to me and I know that Jesus Christ is the glue that has held us together. I hope you enjoy this, we love you all so much. (Don't forget to scroll down and pause the music before playing this one)

Rain Gutter Regatta -Beginning and Ends

As you can see from these wonderful pictures, Joshua is a star. He built a boat for his scout troops raingutter regatta and took 3rd place. (The two boats that beat him were illegal) For those of you who do not know what this is, they take raingutters and fill them with water and the scouts build boats from a kit and race them. There are rules for building and then you blow your boat down the track without touching it. I was proud of Joshua for 2 reasons. 1- He did a good job building and racing his boat, and 2 - He did not say anything to the boys with illegal boats. I am sure they did not know about the rules and probably would have felt really bad if someone had said something. The point of the race is for the boys to build something and have fun and while it should be fair for everybody it just wasn't that important to Josh to win, he was happy with third and proud of his boat. That is what I want for him, not worried about others just happy. He did cry a little when he lost his last heat but more from the excitement than anything. One of the side affects of his cancer is that he can be emotional and can't control it. That is common for children with brain tumors and a lifelong side effect.

Well today is also a milestone. I am sitting at the hospital while they hydrate Josh for his last inpatient chemo. Can you believe it? He is having pizza and reading Harry Potter while he waits for them to start this last round. Rachel is napping in his bed and the other kids are down in the play room having fun. We will be here almost as often for outpatient appointments for the next 6 months while they do testing and followups but while there will always be lots to do, this phase is over. I should be happy, and I am but, I am also nervous. It is a dangerous waiting game we play now. The good news is that this game is Gordon's and mine to play and Josh doesn't have to be part of the worry. He can start to find a place where he can fit in with his new life. He will never be able to do things other kids his age do but I am sure he will find his way and do it much better than I could. There will still be lots of challenges but he is up to it! We are really starting to plan his end of treatment party. I think it will be sometime at the end of April. By then he will have his strength back from this last cycle and enjoy it. He wants to make it a Webkinz party and ask everyone to bring a Webkinz and then donate them all to the hospital for other kids. He has a goal to collect 250 webkinz so we are going to have to really get working. Luckily you can get little webkinz at the Walgreens inexpensively so I don't mind asking people to bring them. Anyway thank you for your prayers, we continue to need them and know they matter.

Needles and Nerves

Joshua is a hero! (not that you didn't already know that) I told him last Monday that after this last cycle of treatment they will schedule to remove his port. After that he will have to have regular IVs for MRIs ever couple of months. I just wanted to prepare him for the future but it is not for a while yet. Well he told me that night that when he got his blood draw this week he wanted to do it in his arm not his port. I was surprised but told him that was great. On Friday he came to the clinic with a smile on his face and fear in his heart. When they took him in the blood draw room he cried but he did not stop. He took a minute to calm himself and held out his arm. - You need to understand that the day he had his brain surgery they made him have an IV before they put him out and it blew. He was completely freaked out and 6 nurses held him down and put another one in. (they had to have a blood match before surgery in case they needed to give him blood) Since that day he panics at the thought of a needle in his arm and if more than 2 nurses are in his room he gets very frightened. For him to put his arm out voluntarily was truly an act of courage. He just doesn't stop amazing me. So many times he could be overwhelmed but he just catches his breath and goes on. I am so grateful to be his mom and so humbled too. His counts are good and he is feeling great. We have a small break and he goes into the hospital on the 13th for his last inpatient chemo.
We have been planning his big end of treatment party and I will be posting the information soon about that. Josh is very excited about this and is planning the menu. He wants grandma's purple salad (it is delicious) and is talking about punch. I have promised a fancy cake and lots of fun. Anyway, have a great week. Sorry this post took so long, homeschooling keeps me busy. All our love and prayers are for you and thanks for all your prayers for us.

I Win!!!!!!

This round is over! We have finished our last round of cisplatin --- yayaya! Joshua did so well, it was really hard but when he had to take the CCNU (which must be swallowed) he struggled but finally looked at it and said "I Win" and took it. He cried but I was so proud of him. He came home late last night and got up for church this morning. He is so tired but just never gives up. We still have several rounds of Vincristine, our outpatient chemo and a B cycle to go but this was a big hurtle. It feels so good to say this is the last time when we do things with Joshua. The last A cycle, the last cisplatin, the last whatever. Also his hearing test was great, a small drop but not enough to be concerned about. We are about 10 weeks from being done with chemo, can you believe it! Joshua is a miracle, and I can't wait to begin celebrating this milestone. There will be parties and we are hoping for a summer of fun! As always we go from prayer to prayer so thank you. I hope that everyone who reads this understands that you will be celebrating along with us in ten weeks, this is your victory too.

Home again, Home again, Gigity Jog.

Things are more calm now. Gordon is home and getting better, we go to the doctor handling his infection on Tuesday and the cardiologist for a stress test on Thursday. Josh had good counts so unless they drop this week (which is a real possibility) we will be going into the hospital on Friday for his next inpatient chemo. Of course calm here means that between Gordon and Joshua we have 5 doctors appointments, 4 other appointments, dogs to breed, and lots of paperwork to catch up on.
I am very grateful for the chance to focus on things and still have my partner and best friend to help. Lots of people say that our life is hard but truly we are very blessed. Someone told us that 9 out of 10 people that went through what Gordon did do not survive. We know many children with Josh's diagnosis that can't walk without a walker, or have shunts. No matter what the future holds today is great! We are living and trying to have fun! We are together! We are blessed!