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!

Deja Vue (did I spell that right?)

OK we are back were we started and Gordon is in the hospital again. His heart is fine this time but he is still in pretty serious condition. When he left the hospital on Monday they gave him a flu shot and a pneumonia shot. OK, this is one in a million, he got an infection at the site of the injection and it spread to his blood. Oh, and he has pneumonia too. Needless to say the doctor at the urgent care freaked when they got his labs back. The doctor there told us it was the highest white count he had seen. The good news is that he is doing much better now that he is on antibiotics. He is still exhausted and really out of it but if you had seen him at home it is an improvement! He will be in the hospital till at least Saturday and then they will see if he is ready to go or needs more antibiotics. I am a little worried, the site of the infection is getting larger but I know they are watching and I will make sure the doctor looks at it tomorrow.
I feel bad for him he is really hammered, also I am so tired of things going wrong, and I am trying to keep things light for the kids.

We go to the hospital Friday to check Joshua's counts and I am praying they are OK, I worry about him getting sick now. I am very tired so I had better sign off but keep praying for us, we are trying to keep it together and need all the help we can get...........

It's Gordon's Turn

OK, so I know this is Joshua's blog but I am hoping to use this to get the word out. Gordon is in the hospital today. They are moving him out of ICU to a cardiac floor today so he is finally stable. Maybe I had better back up and start from the beginning.
Yesterday afternoon Gordon started feeling that his heart was not beating in rhythm. It is called atrial fibrillation. He has had this before but it has been a long time. Well he did not want to go to the hospital but I was worried so I insisted he get a blessing. Well one of the 2 men from our church who came was Brother Cameron. Lucky (OK just one of many blessings we had last night) for us he is a doctor. So after the blessing he checks his pulse and says that he needed to go to the ER right away. With his insistence Gordon agreed to go. Once there the doctor in the ER decided to cardiovert him with paddles. They gave him a pain med and hit him. No warning, nothing. When we told brother Cameron he was shocked, he couldn't believe that they did not put him out for this. It was frightening for me and painful for Gordon. However he dropped from 150 beats to 88 per minute. So the ER felt he was OK and they were going to send us home when things went from bad to worse. About 20 minutes after the shock Gordon told me he thought he was "fading". I looked at the heart monitor and saw 23 beats, 20 beats, and flat line. I yelled for the nurse that his heart stopped and they came running. The doctor felt for a carotid pulse and said his heart has stopped and to begin CPR and bag him. They were preparing to intubate and everything but he came back in about 30 seconds and they got him stabilized. By now I am freaked out and he is very confused. He did not realize what had happened and kept telling them he was ready to go home. Needless to say I was not OK with that. Well that brings us to today, he is out of ICU and on the cardiac floor and doing extensive testing. Even the cardiologist says that what happened is very rare and they need to figure out why his heart stopped. He just finished an echo cardiogram, which is a big word for an ultrasound of his heart. I was proud to say I recognized the aorta, left ventricle, and two valves. Tomorrow he is scheduled for a stress test and a nuclear stress test. They have taken tons of blood and are checking cholesterol, hypertension, diabetes. I really like this doctor because he is thorough and cautious. He is waiting for every test before he decides what to do. We have heard everything from pacing to medicine to an automatic implanted cardiac defibrillator. One thing I like is we will have answers tomorrow so that is good, I can't take waiting at this point.
Now, on to the important stuff: BLESSINGS
1. Brother Cameron and priesthood blessings in general
2. Going to the ER and not having this happen at home (they told us he would have died)
3. Being able to call the Bishop and not be alone when I was so very frightened
4. Health insurance (became active January 1)
5. Good doctors, I can't say enough about how impressed I am with the cardiologist.
6. Another day together (I will never let him go to sleep again without telling him I love him.
7. A great ward, they have rallied and taken the children in without question
8. Sister Flores who stayed most of the night last night and did my dishes
9. Family who fasted today for us.
10. Just the knowledge that no matter what we will always be together

I will keep everyone posted but right now we are just waiting for a plan to move forward and I am very excited because he is very cranky and I see that as a good sign. Poor Gordon, his chest really hurts, just the shock would have been enough but the CPR did him in.