We got home tonight from Dallas and I am happy to have all of our little family under one roof and in our own beds tonight.
Let me get to the most important news first before recapping the last few days. An MIBG scan is designed to detect neuroblastoma. Jude gets a radioactive tracer injected by an IV the day before the scan. The next day he is sedated and scanned for 2+ hours. The radioisotope attaches to tumor cells and lights them up on the scan. Jude's scan was clear...meaning no neuroblastoma cells were detected! Thank you Lord! While he was sedated, they did a bone marrow biopsy. We are still waiting for the pathology from that as well as for the results from his labs. We are of course hopeful that these are all clear and if so, we can go to only going to his oncologist every six months and maybe even not have to do anymore scans and only follow-up labs and appointments in Dallas. THANK YOU for your prayers for Jude. We are so grateful for how well he is doing and for the Lord's healing hand on Jude.
We drove to Carrie's after Brad got off work Monday and got in super late. We got up painfully early to go to Children's Tuesday morning. But not before a stop at Mommy's favorite restaurant for breakfast.
Jude was pleased with his new "bracelet". Clearly he had forgotten what that bracelet means.
As always we were early (I like to be early) so we walked around the hospital. It is so amazing. They truly cater to the children. Every single doctor and nurse that walked by us smiled sweetly at Jude and were all so helpful. They have a huge, multi-level train display that Jude loved looking at.
After getting his radioactive injection he was not as happy about his stupid bracelet. The last MIBG we had done was done in Amarillo. It took them 14 times to get the IV in. FOURTEEN times. That was our last scan to ever do in Amarillo. Ever. Generally they get the IV in the first time at Children's but this time it took twice. Twice is a lot less than 14...so we were ok. You can see his two boo boo's. Poor guy.
The nuclear medicine nurse that gave Jude his injection had reviewed Jude's records which included the scans from Amarillo. All of them were completely unreadable and therefore garbage. All of that pain that Jude went through, all of that time spent on the scans, all of the waiting, all of the money spent on the scans...garbage. The nurse was so angry she immediately sent a letter to the Amarillo hospital that did the scans. Brad and I told her and the rest of the team all that had taken place in Amarillo before we changed to Children's. They were shocked. And in retrospect, all that Jude went through seems barbaric from the way they tied him to the table with a sheet, to the fact that they didn't sedate him for any of his scans, to over-dosing him with the SSKI...not even getting into his previous oncologist completely screwing up his records...I can't believe we waited 6 months to change to Children's.
Jude got 2 special teddy bears for getting his injection.
After leaving the hospital we went straight back to the hotel and all three of us took a much needed nap.
Jude woke up much happier.
We prepared for the next day.
And Jude was out like a light. He was the only one that got much sleep that night. But he was the only one that mattered.
Jude was decidedly less excited to be back at the hospital the next morning.
Waiting for sedation.
At least he had Elmo.
Then he demanded to have his boots back on. So cute!
We got to be with Jude while they put him under. Holding your baby while he goes under is heart-breaking but I wanted ours to be the last faces he saw. We waited for several hours. Luckily they have amazing food and even a Starbucks in the hospital. If we are going to have to wait that long...it might as well be with a good cup of coffee, comfy chairs, good music and a good book.
When we went back to radiology, the Nuclear Medicine nurse started by telling us Jude did well and we would be taken back to see him in a minute. Then she told us that the Amarillo hospital had already contacted her concerning her letter about Jude's scans and asked her to come and teach a class to their Nuclear Medicine department on how to properly do the MIBG scans!!!! This is great for her and makes me feel like at least Jude's pain wasn't entirely wasted if no more children have to suffer due to Amarillo's lack of knowledge on how to do these scans. Later at clinic, Dr. Watt told us how great it is that the Nuc Med nurse has been invited to Amarillo to teach them how to do these scans.
We finally got to go back and got our hands on our sweet little Judie Bug. He does not wake up well from anesthesia but this time was particularly bad and heart-breaking. The sweet nurse made sure he woke up with Elmo beside him.
His throat was very irritated from the tube they put in.
Daddy helped him with a few sips of 7-up.
Still groggy, we headed over to the clinic for his appointment with his oncologist. More pokes and labs later we got the good news that his MIBG was clear.
Dr. Watt, his amazing and precious oncologist was so happy to give us the good news. She also doesn't anticipate any problems with the pathology. She was very positive and encouraging. She will call to let us know the remaining results as soon as she gets them.
Meanwhile, I couldn't wait to get back to Carrie's and love on my pretty little Katy Jane. Carrie had been sending me regular pictures to keep my withdrawals to a minimum. Silly face!
I was so happy to see her again.
Jude easily went to sleep. I can't imagine how exhausted he was.
This morning it was time to get up and get back to Amarillo as fast as possible so I could get back to my little sunshine. I missed him so much. This momma was not meant to be apart from her babies.
I am happy to have everyone back together again, under one roof and in our own beds. But I am so grateful for the support of my family keeping the kids so Brad and I could focus entirely on Jude. We are so very blessed to have the help and encouragement from our families.
The first night we spent at Carrie's I woke up and had a little extra time and read a book she had beside the bed by Chuck Swindoll (I think...and I can't remember the name of the book). Here is a very timely excerpt I read the morning of Jude's injection starting with a quote by one of my favorite speaker/authors, Helen Roseveare. She was badly beaten and raped while she was a missionary in the Congo. Through her experience she learned the following lesson from the Lord asking her:
"Can you thank Me for trusting you with this experience even if I never tell you why?" Chuck Swindoll goes on to say: "What a profound thought. God has trusted each of us with our own set of unfair circumstances and unexplained experiences to deal with. Can we still trust in Him even if He never tells us why? The secret to responsible trust is acceptance. Acceptance is taking from God's hand absolutely anything He gives, looking into His face in trust and thanksgiving, knowing that the confinement of the hedge we're in is good and for His glory. Even though what we're enduring may be painful, it's good simply because God Himself has allowed it. Acceptance is resting in God's goodness believing that He has all things under His control-even people who are doing wrong. Yes...even wrongdoers.
Christianity is trusting Christ, not self. Most people are trying to reach God, find God, and please God through their own efforts. But perfect trust is resting all of one's weight on something else, not on self. It's like resting on crutches to hold you up when you twist an ankle. You lean on them as your strength. Proverbs 3:5-6 teaches us to 'Trust in the Lord with all you heart, and do not lean on your own understanding. In all your ways acknowledge Him and he will make your paths straight.' In other words, strength comes from proper perspective. Elton Trueblood put it this way, 'Faith is not belief without proof, but trust without reservation.' Strength comes from choosing to fully trust, pray and praise. Our circumstances may not change, but in the process we change."
The "confinement of the hedge" we have been in for the past 18 months is having a son diagnosed with cancer. What a peace to know that it is good and for His glory. It is good. Even the cancer is good because it can be used for His glory. It is good because God Himself has allowed it. It is good. Our painful circumstances are good because God is good.
Nahum 1:7- God is good, a hiding place in tough times. He recognizes and welcomes anyone looking for help, no matter how desperate the trouble.
Let me get to the most important news first before recapping the last few days. An MIBG scan is designed to detect neuroblastoma. Jude gets a radioactive tracer injected by an IV the day before the scan. The next day he is sedated and scanned for 2+ hours. The radioisotope attaches to tumor cells and lights them up on the scan. Jude's scan was clear...meaning no neuroblastoma cells were detected! Thank you Lord! While he was sedated, they did a bone marrow biopsy. We are still waiting for the pathology from that as well as for the results from his labs. We are of course hopeful that these are all clear and if so, we can go to only going to his oncologist every six months and maybe even not have to do anymore scans and only follow-up labs and appointments in Dallas. THANK YOU for your prayers for Jude. We are so grateful for how well he is doing and for the Lord's healing hand on Jude.
We drove to Carrie's after Brad got off work Monday and got in super late. We got up painfully early to go to Children's Tuesday morning. But not before a stop at Mommy's favorite restaurant for breakfast.
Jude was pleased with his new "bracelet". Clearly he had forgotten what that bracelet means.
Jude got 2 special teddy bears for getting his injection.
We finally got to go back and got our hands on our sweet little Judie Bug. He does not wake up well from anesthesia but this time was particularly bad and heart-breaking. The sweet nurse made sure he woke up with Elmo beside him.
Dr. Watt, his amazing and precious oncologist was so happy to give us the good news. She also doesn't anticipate any problems with the pathology. She was very positive and encouraging. She will call to let us know the remaining results as soon as she gets them.
Meanwhile, I couldn't wait to get back to Carrie's and love on my pretty little Katy Jane. Carrie had been sending me regular pictures to keep my withdrawals to a minimum. Silly face!
"Can you thank Me for trusting you with this experience even if I never tell you why?" Chuck Swindoll goes on to say: "What a profound thought. God has trusted each of us with our own set of unfair circumstances and unexplained experiences to deal with. Can we still trust in Him even if He never tells us why? The secret to responsible trust is acceptance. Acceptance is taking from God's hand absolutely anything He gives, looking into His face in trust and thanksgiving, knowing that the confinement of the hedge we're in is good and for His glory. Even though what we're enduring may be painful, it's good simply because God Himself has allowed it. Acceptance is resting in God's goodness believing that He has all things under His control-even people who are doing wrong. Yes...even wrongdoers.
Christianity is trusting Christ, not self. Most people are trying to reach God, find God, and please God through their own efforts. But perfect trust is resting all of one's weight on something else, not on self. It's like resting on crutches to hold you up when you twist an ankle. You lean on them as your strength. Proverbs 3:5-6 teaches us to 'Trust in the Lord with all you heart, and do not lean on your own understanding. In all your ways acknowledge Him and he will make your paths straight.' In other words, strength comes from proper perspective. Elton Trueblood put it this way, 'Faith is not belief without proof, but trust without reservation.' Strength comes from choosing to fully trust, pray and praise. Our circumstances may not change, but in the process we change."
~~~~~
Nahum 1:7- God is good, a hiding place in tough times. He recognizes and welcomes anyone looking for help, no matter how desperate the trouble.
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