Other than the day after we came home from the hospital, which we had NO idea what to expect, today was the first day that we have not had to run around and go see a doctor or visit the clinic. It was a gorgeous day today, which gave us a couple of opportunities to get Jacob out for a walk. We walked by the pool today and saw that it was open and there were people swimming. We are planning on talking to the doctor on Tuesday to see what the time frame is before he can do some swimming. He could use the exercise and a little bit of fun.
Joshua and I woke up this morning and got to go see the new Indiana Jones movie. They were giving away some Indiana Jones hats, so we made sure to get one for Jacob. He looks good in his new hat.
Looking forward to the rest of this weekend, we are hoping for a couple more days like this. Days of rest and Days of some family time.
Saturday, May 24, 2008
Friday, May 23, 2008
Home Again
Just wanted to give a quick update on the hospital visit today.
Thanks again for all the prayers!!!!!
- Jake's surgery went very well.
- No leukemia cells were found in the spinal fluids
- We will not get the detailed results of the biopsy until Tues. At that time we will know whether he needs to go back in for another biopsy next Friday or whether he gets to go back in 3 weeks.
- Blood labs came back today. The doctor was very pleased with the results. His white/red/platelet counts were low, but they were at a level that is expected for someone at this point in their treatment
- The doctor was also happy to report that this was the first time they had seen new, young cell counts in his blood work. This means that the marrow is beginning to make cells on its own now that the leukemia cells are being destroyed.
- Jake was thrilled when we got to the clinic to see that they had Easy Mac that he could eat. He was still a little upset that we wouldn't let him have breakfast this morning.
Thanks again for all the prayers!!!!!
Thursday, May 22, 2008
A new normal
I have used the phrase - a new normal - a lot the last few days. That is where we are, learning to live with a new normal. And that is ok - there are some great things going on in our new normal.
Today, coming home from the hospital, Brian and I both realized that we could answer the question with, "I am good." We, like every parent in the world, would never choose this situation. Brian and I would gladly pay any price to take this from our son. But we are starting to see that our life is good. We are learning and growing and really finding out how to live the life we want with our focus on what really matters.
The clinic / hospital visit today provided us with some more good news. First and for Jake most important, re accessing the port did not hurt! Before leaving home we slathered him with some emla cream (numbing) and then sealed it in with Press n Seal. Who knew? At the clinic the first thing was a finger prick and Jacob was a little upset because it hurt - until he got to go to the toy closet and picked a small Lego set. After that was time to insert the (very large) needle into the port and Jake was squeezing our hands for all he was worth. Z, the nurse did a count of three and he freaked out a little on 3. Of course she had inserted it on 1 and he quickly calmed and said, "That didn't hurt. I didn't feel it." He is starting to trust that we are telling him the truth.
Dr Odom then gave us some good news and some news that raised a couple of question marks. First, the final tests of Jacob's spinal fluid confirmed that there were -0- leukemia cells in the spinal cord / brain. She also let us know that some early pathology on the bone marrow was confirming that the chromosomes involved were the kind that are favorable to treat. That news came with a bit of an asterisks - because they are also seeing an additional chromosome involved (one that is harder to treat) and they have not seen this combination before. These are early reports and as they continue to process the bone marrow they will have more information. For now - I know that God has seen that combination before - and we ask that you join us in praying that he continues to give wisdom to our medical team. We will know much more of what impact that will have on treatment when we reach the 4 week mark.
Next we went across to the hospital and settled in for the platelet transfusion. Any time they do a transfusion they give Benadryl prior - to limit any reactions. Last week Jake reacted to the Benadryl (when it was an IV push) by having the worst headache ever imagined. Brian said it was all he could do to watch him scream in pain until the Valium worked, and has since described it as the worst half hour of his life.
Well, today we had the IV push and because of the reaction last week they did it much slower trying to minimize the side effects. Minimize yes, eliminate no. Jake started fidgeting, moving, shifting, wiggling and Brian recognized that as what had been the start of his negative reaction. We quickly called the nurse and as she came in Jake was on one foot with his arms braced behind him and his other leg sticking straight out. Then came the cramps. How weird is it that Valium becomes just one of many of your go to drugs. The pain was intense enough that he was arching off the bed - but the Valium worked quickly and he was able to fall asleep for the rest of the transfusion.
Needless to say - we had it put in his chart that he is allergic to Benadryl via an IV push. Yikes.
All of his blood work from the day came back looking really good. His body has caught up and is processing all the waste from the chemo cells and his chem panel looks really good.
Tomorrow morning we will check in at 7 (yes - AM) to day surgery. Jacob will have a bone marrow biopsy, a spinal tap and chemo administered into the spinal fluid. Once he wakes up in recovery we will cross back over to the clinic and he will have a different dose of chemotherapy via his port. Once that is done, and we get the all clear we will bring our guy home.
Pray! Please keep praying.
We will post tomorrow once we are home
- Knowing that you have more people then you can count who love you, care about you and are concerned about you. Friends and family who are willing to do ... anything. Simply with the hope of helping you.
- The new normal has an intense focus on the importance of family and the relationships we have with others. It is so easy for life - the urgent- to rob you of what actually matters. Like playing catch with your son. Children who trust you, and like you and want to spend time with you. Laughing with your spouse. Speaking with a friend on the phone, catching up, sharing life.
- Realizing (really getting it) that the creator of the universe, Father God, intimately and actively loves us. His finger prints are everywhere in our life and He has been with us so faithfully through every second of this journey. He cares so much more about sonship then service and He loves us. We are his treasure.
- Our new normal has a growing knowledge and appreciation for the fact that today is precious and should be lived fully. Find balance. (Notice that even in the new normal I did not say I have found balance, it is the new normal not heaven!) The entire "to- do" list does not need to be completed today - sometimes building with Lego's is far more important then organizing your entire house.
Today, coming home from the hospital, Brian and I both realized that we could answer the question with, "I am good." We, like every parent in the world, would never choose this situation. Brian and I would gladly pay any price to take this from our son. But we are starting to see that our life is good. We are learning and growing and really finding out how to live the life we want with our focus on what really matters.
The clinic / hospital visit today provided us with some more good news. First and for Jake most important, re accessing the port did not hurt! Before leaving home we slathered him with some emla cream (numbing) and then sealed it in with Press n Seal. Who knew? At the clinic the first thing was a finger prick and Jacob was a little upset because it hurt - until he got to go to the toy closet and picked a small Lego set. After that was time to insert the (very large) needle into the port and Jake was squeezing our hands for all he was worth. Z, the nurse did a count of three and he freaked out a little on 3. Of course she had inserted it on 1 and he quickly calmed and said, "That didn't hurt. I didn't feel it." He is starting to trust that we are telling him the truth.
Dr Odom then gave us some good news and some news that raised a couple of question marks. First, the final tests of Jacob's spinal fluid confirmed that there were -0- leukemia cells in the spinal cord / brain. She also let us know that some early pathology on the bone marrow was confirming that the chromosomes involved were the kind that are favorable to treat. That news came with a bit of an asterisks - because they are also seeing an additional chromosome involved (one that is harder to treat) and they have not seen this combination before. These are early reports and as they continue to process the bone marrow they will have more information. For now - I know that God has seen that combination before - and we ask that you join us in praying that he continues to give wisdom to our medical team. We will know much more of what impact that will have on treatment when we reach the 4 week mark.
Next we went across to the hospital and settled in for the platelet transfusion. Any time they do a transfusion they give Benadryl prior - to limit any reactions. Last week Jake reacted to the Benadryl (when it was an IV push) by having the worst headache ever imagined. Brian said it was all he could do to watch him scream in pain until the Valium worked, and has since described it as the worst half hour of his life.
Well, today we had the IV push and because of the reaction last week they did it much slower trying to minimize the side effects. Minimize yes, eliminate no. Jake started fidgeting, moving, shifting, wiggling and Brian recognized that as what had been the start of his negative reaction. We quickly called the nurse and as she came in Jake was on one foot with his arms braced behind him and his other leg sticking straight out. Then came the cramps. How weird is it that Valium becomes just one of many of your go to drugs. The pain was intense enough that he was arching off the bed - but the Valium worked quickly and he was able to fall asleep for the rest of the transfusion.
Needless to say - we had it put in his chart that he is allergic to Benadryl via an IV push. Yikes.
All of his blood work from the day came back looking really good. His body has caught up and is processing all the waste from the chemo cells and his chem panel looks really good.
Tomorrow morning we will check in at 7 (yes - AM) to day surgery. Jacob will have a bone marrow biopsy, a spinal tap and chemo administered into the spinal fluid. Once he wakes up in recovery we will cross back over to the clinic and he will have a different dose of chemotherapy via his port. Once that is done, and we get the all clear we will bring our guy home.
Pray! Please keep praying.
We will post tomorrow once we are home
Super Heroes
Jacob has always loved super heroes. He can name every member of the Justice League and when there is a choice that involves super heroes, you can bet that will be his selection. When Brian and Jake were designing the wrist bands, the batman font was an immediate lock and it did not take all that long to land on "JACOB IS MY SUPERHERO". What happened next is what I love.
Jacob's 2nd grade teacher, Mrs Goodman, had asked if she could bring a present for Jacob. We live next door to our school so she walked home with Joshua to bring Jake his present (she hoped to visit also - but all y'all already know about our delays getting out of the hospital). Mrs G gave him the most awesome bible.
The SUPER HEROES Bible - The quest for good over evil - is the coolest kids bible I have ever seen. I am so excited and thankful for such a wonderful present that came at just the perfect time. Along with a host of cool reading aides, the theme running through this bible is that, "The super heroes of the Bible were regular people, just like you are, but they followed a super God. He worked in them so they became heroes for him. And so can you!" As you read the stories of the Bible you can use the Super Hero Decoder to figure out and track the hero's as they get their power from God himself.
Jacob's 2nd grade teacher, Mrs Goodman, had asked if she could bring a present for Jacob. We live next door to our school so she walked home with Joshua to bring Jake his present (she hoped to visit also - but all y'all already know about our delays getting out of the hospital). Mrs G gave him the most awesome bible.
The SUPER HEROES Bible - The quest for good over evil - is the coolest kids bible I have ever seen. I am so excited and thankful for such a wonderful present that came at just the perfect time. Along with a host of cool reading aides, the theme running through this bible is that, "The super heroes of the Bible were regular people, just like you are, but they followed a super God. He worked in them so they became heroes for him. And so can you!" As you read the stories of the Bible you can use the Super Hero Decoder to figure out and track the hero's as they get their power from God himself.
Super Hero Decoder
Believes
Brave
Cheerful
Faithful
Forgiving
Giving
Helpful
Honest
Kind
Loving
Obeys
Patient
Self - controlled
Strong
Tells Others
Thankful
Tries Hard
Trusted
Wise
Believes
Brave
Cheerful
Faithful
Forgiving
Giving
Helpful
Honest
Kind
Loving
Obeys
Patient
Self - controlled
Strong
Tells Others
Thankful
Tries Hard
Trusted
Wise
My friend Vicki asked what super powers would be activated by wearing Jake's wrist bands. These are the ones we are hoping to find in our family as we walk this new path. Last night as Brian and I were sitting on the front porch having our first real conversation since this all started he said something that to me was very profound. He was talking about how the trials of our life benefit us by shaping us into the exact person God wants us to be. Our hope is that months down the road, when we reach the milestone that says "CURED" we can look back and shout how God has shaped us - coded us - to be his super heroes.
And, if that is not enough, the title page of the Bible has these verses
And, if that is not enough, the title page of the Bible has these verses
[The Lord says],
"I will lead them along paths they had not known before,
I will guide them on roads they are not familiar with.
I will turn the darkness into light as they travel.
I will make the rough places smooth.
Those are the things I will do.
I WILL NOT desert my people."
Isaiah 42:13, 16
"I will lead them along paths they had not known before,
I will guide them on roads they are not familiar with.
I will turn the darkness into light as they travel.
I will make the rough places smooth.
Those are the things I will do.
I WILL NOT desert my people."
Isaiah 42:13, 16
Thank You! Thank You! Thank You Mrs Goodman for such an awesome gift!
Wednesday, May 21, 2008
Doctors Visit Tomorrow 5/22
Sorry for the mass postings this evening.
I thought I would give an update as to what Jake's schedule looks like for the next couple of days.
Tomorrow we are heading into the clinic. They are going to take another blood sample and check to see where all of his levels are at. In addition to the blood test, they are going to give him a transfusion of platelets to prepare him for Friday.
On Friday morning, he will be going in for an out-patient surgical procedure. They will be doing another bone marrow biopsy as well as a spinal tap. These are part of the standard process so that the doctors can make sure his bone marrow is responding to the treatment and to make sure that no leukemia cells have moved into his spinal fluid. Jake told me tonight that he is not worried about the surgery at all. He didn't remember or feel anything the last time he had his surgery, so he is completely at ease with Friday's procedures.
He continues to amaze me with his understanding of this situation as well as his ability to grasp all the steps that are being taken to help cure him of this sickness. We had another discussion this evening about the fact that it will not be too much longer before he will start to lose some of his hair. I explained that Josh and I are both going to shave our heads as well to help support him. He was a little concerned about this and doesn't really want us to cut our hair. He said that he doesn't want us to have to deal with people laughing at us. Unfortunately, by digging a little deeper on that one he commented that he expects people to laugh and make fun of him when his hair falls out. I tried to explain to him that I think he is underestimating people and that I would be very surprised if anyone laughed. We talked about some different hats that he could wear. He is wanting to get some Minnesota Twins hats to wear when all this happens. We'll have to see if we can find a couple of them here in Colorado since this is not Twins territory.
Pray for us tomorrow as we get his blood tests. We are expecting the white and red cell counts to be low, but we are asking God to make sure that the rest of the counts are right where they need to be to allow him to remain at home. He had such a good day today and commented that he liked being able to sleep in his own bed and play with his own toys.
I thought I would give an update as to what Jake's schedule looks like for the next couple of days.
Tomorrow we are heading into the clinic. They are going to take another blood sample and check to see where all of his levels are at. In addition to the blood test, they are going to give him a transfusion of platelets to prepare him for Friday.
On Friday morning, he will be going in for an out-patient surgical procedure. They will be doing another bone marrow biopsy as well as a spinal tap. These are part of the standard process so that the doctors can make sure his bone marrow is responding to the treatment and to make sure that no leukemia cells have moved into his spinal fluid. Jake told me tonight that he is not worried about the surgery at all. He didn't remember or feel anything the last time he had his surgery, so he is completely at ease with Friday's procedures.
He continues to amaze me with his understanding of this situation as well as his ability to grasp all the steps that are being taken to help cure him of this sickness. We had another discussion this evening about the fact that it will not be too much longer before he will start to lose some of his hair. I explained that Josh and I are both going to shave our heads as well to help support him. He was a little concerned about this and doesn't really want us to cut our hair. He said that he doesn't want us to have to deal with people laughing at us. Unfortunately, by digging a little deeper on that one he commented that he expects people to laugh and make fun of him when his hair falls out. I tried to explain to him that I think he is underestimating people and that I would be very surprised if anyone laughed. We talked about some different hats that he could wear. He is wanting to get some Minnesota Twins hats to wear when all this happens. We'll have to see if we can find a couple of them here in Colorado since this is not Twins territory.
Pray for us tomorrow as we get his blood tests. We are expecting the white and red cell counts to be low, but we are asking God to make sure that the rest of the counts are right where they need to be to allow him to remain at home. He had such a good day today and commented that he liked being able to sleep in his own bed and play with his own toys.
Good Day/Good Night
Jake had a good day today. he spent some time putting together some Indiana Jones Legos sets, reading books, catching up on a couple of cartoons, and letting his Dad beat him at Mancala.
The icing on the day was the Chicken Pot Pie that Ms. Debbie and Ms. Daimi brought for dinner. It was absolutely delicious!!! Jake was happy to see that there were leftovers for him to have for lunch tomorrow.
After dinner, Josh and I went out and played a little catch. Jake sat out on the porch and played with some of his trucks. Jake decided that he was a little embarrassed sitting on the porch in his PJs, so he decided it was time to put some clothes on again. Once that happened, the fun began. Jake and Josh played outside with their remote controlled truck and then brought out the Mancala board and played on the sidewalk. It was good to see Jake wanting to be outside and get some of fresh air and enjoy an incredible evening.
Let's hope that extra time playing helps him get that good nights sleep that he could use.
On another note - Ken, thanks for today!!!! I know I told you that it meant a lot to me, but I am not sure you truly realize how much it REALLY meant!!!!
The icing on the day was the Chicken Pot Pie that Ms. Debbie and Ms. Daimi brought for dinner. It was absolutely delicious!!! Jake was happy to see that there were leftovers for him to have for lunch tomorrow.
After dinner, Josh and I went out and played a little catch. Jake sat out on the porch and played with some of his trucks. Jake decided that he was a little embarrassed sitting on the porch in his PJs, so he decided it was time to put some clothes on again. Once that happened, the fun began. Jake and Josh played outside with their remote controlled truck and then brought out the Mancala board and played on the sidewalk. It was good to see Jake wanting to be outside and get some of fresh air and enjoy an incredible evening.
Let's hope that extra time playing helps him get that good nights sleep that he could use.
On another note - Ken, thanks for today!!!! I know I told you that it meant a lot to me, but I am not sure you truly realize how much it REALLY meant!!!!
Wristbands Ordered
Ok - the response was a little greater than I had anticipated.
I have ordered 80 Adult Wristbands and 50 Youth Wristbands.
The site I ordered them from was https://www.wristbands-with-a-message.com
On this site you can create a customer wristband, which is what we did. Here was the info on the bands we ordered:
Font: Batman
Color: Black/White Swirl
Message: JACOB IS MY SUPERHERO
We will do our best to get bands out to as many people as possible. I will let you know when they arrive.
I have ordered 80 Adult Wristbands and 50 Youth Wristbands.
The site I ordered them from was https://www.wristbands-with-a-message.com
On this site you can create a customer wristband, which is what we did. Here was the info on the bands we ordered:
Font: Batman
Color: Black/White Swirl
Message: JACOB IS MY SUPERHERO
We will do our best to get bands out to as many people as possible. I will let you know when they arrive.
Jewlery
I was talking with Jacob the other day about his illness; he really gets impressed when I start telling him the number of people who are praying for him as well as the number of people who are visiting and commenting on this site. We talked about what we could to do help us remember to keep him in our prayers throughout the day. One of the suggestions I had was that we could buy a wristbands and have something put on it that was just for him. So I looked through some websites to see what I could find. It didn't take long before I found the perfect one:
In the preview of the band, you can't see all of the words. But it says "JACOB IS MY SUPERHERO". I think the think that sealed the deal for me, was that the Font that I was able to select was call Batman Font. Once I saw that, I knew we were done looking.
In the preview of the band, you can't see all of the words. But it says "JACOB IS MY SUPERHERO". I think the think that sealed the deal for me, was that the Font that I was able to select was call Batman Font. Once I saw that, I knew we were done looking.
Tuesday, May 20, 2008
Home Sweet Home
Well, we made it.
A little later in the day than what we were hoping, but we made it.
The Dr. gave us the thumbs-up on going home tonight. After a family discussion between Jake, Tanya, and I we decided the best place to be was at home. Tanya and I were a little nervous about what to expect when we got home. Jake came in, grabbed a snack, and took his place on the couch. After a snack, we had to do some oral care before bed. It was at that moment that I knew we had definitely made the right decision. For the last 5 days, while in the hospital, Jake has had to pee in a container so that they could test his urine. Tanya and I held this container for him each of these days. After his oral care tonight, he asked me to step out of the bathroom and give him some privacy while he peed.
Welcome Home Jacob!!!!
p.s. Mark and Daisha, that roast ROCKED!!!!!!!!!!
The waiting game
Throughout the day, we have made moved both backwards and forwards towards being able to get out of the hospital and get Jake back to his own bed for a little while.
This morning, his phosphorous levels were higher than they needed to be - mainly because the medication is breaking down the leukemia cells so quickly, but his body is still struggling to rid itself of all the toxins. They gave him an antibiotic to help with this and we have seen some good progress.
He has also been experiencing some jaw and throat pain today, so they have been watching him very closely to make sure he is not developing any illnesses. A sore jaw is a side affect of some of the medications that he has been receiving.
One of the biggest concerns with taking him home, is a count that is referred to as his Absolute Neutrophil Count (ANC). The ANC is not measured directly. It is derived by multiplying the WBC count times the percent of neutrophils in the differential WBC count. The percent of neutrophils consists of the segmented (fully mature) neutrophils) + the bands (almost mature neutrophils). The normal range for the ANC = 1,500 to 8,000.
When the ANC count is between 500-1000, you are considered Neutropenic. During this stage, the body has a very difficult time fighting off infection and bacteria.
This morning, Jacob's ANC count was at 24
This was expected to drop to this level with the treatment that he is receiving, but because of how low it has gotten, we are nervous about visitors to the hospital as well as about taking him home.
His levels are expected to remain at this level or fall even lower over the next few weeks as his body continues to fight off the leukemia. It is sort of like climbing a steep hill. You slowly lose momentum as you climb, and it gets more and more difficult to maintain your initial pace. However, once you hit that pinnacle, things begin to get a little easier and your pace will start to pick up. This is the same journey we are expecting to see with Jacob.
As of 4pm MT, we are still waiting for a decision on whether he will be able to go home today. his blood counts are looking good, but he has had a little bit of a sore throat and his temperature has been rising slightly. The Dr's wanted to give him some medicine and then follow-up to see if things stabilized.
Hopefully, we will get some confirmation one way or the other pretty soon.
This morning, his phosphorous levels were higher than they needed to be - mainly because the medication is breaking down the leukemia cells so quickly, but his body is still struggling to rid itself of all the toxins. They gave him an antibiotic to help with this and we have seen some good progress.
He has also been experiencing some jaw and throat pain today, so they have been watching him very closely to make sure he is not developing any illnesses. A sore jaw is a side affect of some of the medications that he has been receiving.
One of the biggest concerns with taking him home, is a count that is referred to as his Absolute Neutrophil Count (ANC). The ANC is not measured directly. It is derived by multiplying the WBC count times the percent of neutrophils in the differential WBC count. The percent of neutrophils consists of the segmented (fully mature) neutrophils) + the bands (almost mature neutrophils). The normal range for the ANC = 1,500 to 8,000.
When the ANC count is between 500-1000, you are considered Neutropenic. During this stage, the body has a very difficult time fighting off infection and bacteria.
This morning, Jacob's ANC count was at 24
This was expected to drop to this level with the treatment that he is receiving, but because of how low it has gotten, we are nervous about visitors to the hospital as well as about taking him home.
His levels are expected to remain at this level or fall even lower over the next few weeks as his body continues to fight off the leukemia. It is sort of like climbing a steep hill. You slowly lose momentum as you climb, and it gets more and more difficult to maintain your initial pace. However, once you hit that pinnacle, things begin to get a little easier and your pace will start to pick up. This is the same journey we are expecting to see with Jacob.
As of 4pm MT, we are still waiting for a decision on whether he will be able to go home today. his blood counts are looking good, but he has had a little bit of a sore throat and his temperature has been rising slightly. The Dr's wanted to give him some medicine and then follow-up to see if things stabilized.
Hopefully, we will get some confirmation one way or the other pretty soon.
Monday, May 19, 2008
Tired
So much on my mind tonight - so much more I wanted to do today, to get done. Even with a great night of sleep last night (a Tylenol pm helped to shut down the non-stop mental racing) I quickly found myself back to ... tired.
Yesterday was an internal fear factor kind of day. The Dr's kept saying what good news it was that Jacob could go home. But for me, to take my very sick kid home, and fully into our own care again - nothing could be more terrifying.
Part of it was knowing that our house was soo not ready. Nothing makes you realize how much you live like a pig until you have an immediate need and deadline to clean your house and any time you take to do that - is taken away from your children. I want to say the hugest thank you to the women who came and helped at the house cleaning party. Dee, Leigh, Ashley, Vicki, Angela and Kathy - Everyone fantasizes about having someone clean their house for them - the reality is actually very humbling. That you would take your time and help us that much... to serve us in that way... Thank you for letting your actions show your love for us. Molly - you were instrumental to that happening - thanking you for using the gifts God gave you to love and bless my family. Because of all of you I feel it will be OK to bring Jake home.
Taking Jake home. That thought also makes me feel tired. Normally, when you take your child home from the hospital, he is getting healthier. For Jacob we are taking him home to get sicker. I can't wrap my brain around that - but my heart must understand because it is breaking right now. The chemotherapy treatment is daily. Pills in the morning. Pills at night. Swish and spit, Swish and swallow, support agents, Iv push, transfusions, injections... it is all working. We get copies of the blood work everyday and there are fewer leukemia cells. Medically speaking it is working and that is a great thing. But maternally speaking - I simply want to scoop his body up from that bed, take him away from all of the needles and machines, the medicine and the pain ... and go back to the life where hugging him did not cause pain and he could be a little boy.
So tired, and sleep is so far away.
At least my baby rests.
Moving Day - Postponed
No major setback here, just erring on the side of caution.
Due to the delay in getting his morning treatment (which we are still waiting on), they would be able to let him go home, but it would not be until later this evening. To make things easier on everyone, we have decided to stay another night and allow the staff here to get him fully hydrated and ready for the move back home.
I talked to Tanya, and she was telling me that there was a whole crew at the house finishing up the cleaning and sanitizing. She encouraged me to not get too used to it and expect her to keep it at that level ;)
I will provide some updates later today on the progress of his cell counts as the doctor went over them with me this morning. All the counts are moving in the right direction still.
Due to the delay in getting his morning treatment (which we are still waiting on), they would be able to let him go home, but it would not be until later this evening. To make things easier on everyone, we have decided to stay another night and allow the staff here to get him fully hydrated and ready for the move back home.
I talked to Tanya, and she was telling me that there was a whole crew at the house finishing up the cleaning and sanitizing. She encouraged me to not get too used to it and expect her to keep it at that level ;)
I will provide some updates later today on the progress of his cell counts as the doctor went over them with me this morning. All the counts are moving in the right direction still.
Moving Day
Well, the day has arrived. The day that Jacob has been looking forward to and the day that his Mom and I knew would come all to fast. Today they are sending Jacob home from the hospital and will allow him to continue his treatment as an out-patient rather than having to sit in this hospital bed all day. This will get him into some more comfortable surrounds. He is especially excited about being able to sleep in his own bed.
He got some good sleep last night, but not before some minor issues. They needed to give him a blood transfusion last night to help bolster his system a little more before sending him home. Prior to a transfusion, they will give the patient some Benadryl to help prevent the body from rejecting the blood. The Benadryl hit him pretty hard and he got an incredible headache. He said it was located in the same spot that you normally get a cold headache when you eat your ice cream too fast. This headache lasted about 30 minutes, and it was pretty painful for him (and for me).
They gave him some Tylenol and Valium to help the headache, so the moment the headache stopped, he was sound asleep. I talked with the Dr this morning and she said that last nights headache was a known side affect of Benadryl when given through the IV> She said next time they will give it to him in pill form and things should be fine. Also, she said that this was not going to put a damper on us getting out of here today. Jake will have some shots this morning of Asparaginase, 1 in each upper leg muscle. This is a one-time treatment, and it's purpose to break down the amino acids that the leukemia cells use to multiply. He is not excited about the shots, but they did but some gel on his legs this morning that have been numbing the spots.
Today we are holding a house-cleaning party. With help of some friends, we are having the house prepared for Jake's arrival. Nothing major, just a thourough vacuum and dusting, washing of all lines, cleaning out the fridge, and making sure that all hard surfaces are wiped down with some anti-bacterial wipes. With this treatment, his immune system is expected to take a hit over the next 4 weeks. Our goal needs to be to keep him as protected from any major germs and infections during this time.
We are going to miss the doctors and nurses that we have had here. They have taken incredible care of Jacob and have been more than patient with us and all of our questions. They have made us feel loved and cared for. Many of them we will get to see in the future as we return for scheduled treatments and surgeries. We will look forward to seeing them again.
He got some good sleep last night, but not before some minor issues. They needed to give him a blood transfusion last night to help bolster his system a little more before sending him home. Prior to a transfusion, they will give the patient some Benadryl to help prevent the body from rejecting the blood. The Benadryl hit him pretty hard and he got an incredible headache. He said it was located in the same spot that you normally get a cold headache when you eat your ice cream too fast. This headache lasted about 30 minutes, and it was pretty painful for him (and for me).
They gave him some Tylenol and Valium to help the headache, so the moment the headache stopped, he was sound asleep. I talked with the Dr this morning and she said that last nights headache was a known side affect of Benadryl when given through the IV> She said next time they will give it to him in pill form and things should be fine. Also, she said that this was not going to put a damper on us getting out of here today. Jake will have some shots this morning of Asparaginase, 1 in each upper leg muscle. This is a one-time treatment, and it's purpose to break down the amino acids that the leukemia cells use to multiply. He is not excited about the shots, but they did but some gel on his legs this morning that have been numbing the spots.
Today we are holding a house-cleaning party. With help of some friends, we are having the house prepared for Jake's arrival. Nothing major, just a thourough vacuum and dusting, washing of all lines, cleaning out the fridge, and making sure that all hard surfaces are wiped down with some anti-bacterial wipes. With this treatment, his immune system is expected to take a hit over the next 4 weeks. Our goal needs to be to keep him as protected from any major germs and infections during this time.
We are going to miss the doctors and nurses that we have had here. They have taken incredible care of Jacob and have been more than patient with us and all of our questions. They have made us feel loved and cared for. Many of them we will get to see in the future as we return for scheduled treatments and surgeries. We will look forward to seeing them again.
Sunday, May 18, 2008
The Countdown Begins
We went over Jacob's blood test results with the doctors this afternoon. They are still very happy with his progress as he continues to do better than expected. Because of this, the doctor has said that they are going to try and send him home Monday afternoon. He will need to receive some treatment in the morning, a couple of shots that he is not looking forward to, and then once they have had a chance to monitor him to make sure there are no abnormal reactions, they will let him head back to some familiar surroundings.
Jake is a little concerned with going home so early, mainly because he is concerned that he will be put to work right away. I tried to explain to him that we have left all of his chores for him over the last couple of days, so he has a number of hours of work to do just to get caught up.
Tanya and I are still a little concerned about the move home, mainly because they won't let us take one of these nurses home with us in one of Jake's bag. I see everything that they have been doing for him and I get a little worried that we will mis something. Tanya has taken great notes from all of the discussions we have had with the nursing staff and the doctors, so we should be OK. They did give us a 24/7 phone number that we could call with any problems or questions. I am sure it won't be to long before they get sick of getting called every 5 minutes.
We are going to sneak in a few more laps tonight and then they are going to give him another blood transfusion to make sure his system is bolstered up for the trip home tomorrow.
Jake is a little concerned with going home so early, mainly because he is concerned that he will be put to work right away. I tried to explain to him that we have left all of his chores for him over the last couple of days, so he has a number of hours of work to do just to get caught up.
Tanya and I are still a little concerned about the move home, mainly because they won't let us take one of these nurses home with us in one of Jake's bag. I see everything that they have been doing for him and I get a little worried that we will mis something. Tanya has taken great notes from all of the discussions we have had with the nursing staff and the doctors, so we should be OK. They did give us a 24/7 phone number that we could call with any problems or questions. I am sure it won't be to long before they get sick of getting called every 5 minutes.
We are going to sneak in a few more laps tonight and then they are going to give him another blood transfusion to make sure his system is bolstered up for the trip home tomorrow.
Adapting to Hospital Life
Jacob is adapting to hospital life with lightning speed. What better way to start your morning then a few new friends and a great Sponge Bob comic book. Jake slept for 9 hours last night and only had to get up once in the middle of the night. This morning he is raring to go!
Yesterday was a pretty good day - the main challenge Jake had was lots (LOTS!) of muscle aches and muscle spasms, up to a 10 on the smiley pain scale. Grandma Dee was a great help in massaging those away, swapping the hot packs and generally distracting him in the midst of the pain. One of the major contributing factors to the muscle pain is the almost complete lack of movement and activity for the last 48 hours and so we are working on getting some exercise to that little body. Usually that is walking a couple of laps around the hallways of the 8th floor. We have even managed to set the security alarm off on one of these jaunts - but according to the nurses - not our fault. Any time something starts beeping Jake is quick to analyze if he is causing it and then declares, "Not me!"
When we leave the room Jake has to wear a mask. His favorite right now is the Disney Mickey Mouse and friends. This just helps protect him from any wandering germs out there. We are all learning how to navigate with the IV pole and are making strides. I imagine if we stay much longer Jake will be riding it around the halls like a skate board.
Yesterday afternoon we did get the kind of news we want to hear. The chemo is already starting to work. Jacob started his chemotherapy Friday night between 10 and 11 PM. The blood draw they took at 4 AM showed increased platelets (into the low end of the normal scale) and a decrease in the blasts (leukemia cells)! Thank you Father God.
Our friend Allison pointed out this amazing verse in the bible, Isaiah 58:8. It starts by saying, "Then your light will break forth like the dawn, and your healing will quickly appear;" In the midst of the scariest time in our life - God is faithful!
Right diagnosis *
Right Hospital *
Right Doctor *
Right Medicine *
*Right God!
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