Hi friends, :)
I don't know if you saw our picture of Jonathan on Facebook, but the removal of the Hickman went well. He is scheduled to have it put back in tomorrow, which, by the way, is his birthday. It will be his "Happy Birthday Hickman". Again, your prayers for this surgery are so appreciated.
Yesterday we were given a four hour pass to take Jonathan out of the hospital. Yay! Fresh air and sunshine! I don't know if he enjoyed it as much as we enjoyed giving it to him, but it felt so nice to have our whole family outside of the hospital, all together... creeping along in the Seattle traffic... to a park. Jonathan did fall asleep on the way there and was sleeping in the double stroller for part of our outing. So he got a fresh air and sunshine nap. :) We were given another four hour pass for today, so here I am in our Ronald McDonald House room with my napping Jonathan and my napping Patience while Xavi and Moriah are out at a playground with daddy.
The thought is that we will be released from the hospital for the weekend and be readmitted for Jonathan's next round of chemo.
Life is so busy, but I'll do what I can to keep you posted. Thank you for keepin' on praying!
Wednesday, June 25, 2014
Thursday, June 19, 2014
Juggling Act
With our two older children here there is not much time for blogging. Trying to be a family as daddy and Jonathan stay at the hospital and Xavi, Moriah, Patience and I stay at the Ronald McDonald House is not seeming very easy right now. Feels like a juggling act.
With all that aside, however, Jonathan has been doing pretty well. He has been on three antibiotics to fight the types of bacteria they have found in his blood. His fever has been under control. He really hasn't had one since about a day after they started administering the antibiotics. But here is the flip side, and the area in which we are now asking for prayer. One of the bacterial infections being targeted is a common one, some sort of staff infection. The other infection is from a much less common strain and the doctors have been concerned that is coming from his Hickman line. They looked into the line with an ultrasound and found a small clot. Then they tried to clean the bacteria out of the line with an ethanol block. I guess that didn't work. Two groups of doctors have been discussing the removal of the line, the Oncology team and the Infectious Disease team, and they have finally come to the conclusion that it needs to go. So tomorrow (6/20) Jonathan will again be put under with anesthesia and be in surgery sometime in the morning. Please pray that all goes well concerning that. We'd also ask for prayer as they will have to put an IV into his arm for the time being. They are thinking they may replace the Hickman as soon as Monday.
Jonathan, otherwise, has been living the hospital life. He's getting physical therapy, occupational therapy, he now has little orthotic braces to help him in learning to walk. Once in a while he's getting music therapy. He's eating great. The nurses, doctors, CNA's all love him.
And we are thanking the Lord for a friend who is with us for a few weeks to help out with our children, Corrie Zastrow by name. What a blessing! She has made it possible for mommy to get to spend a little time with Jonathan as Patience has been having a runny nose and isn't allowed on the oncology floor.
We are so so thankful for all the love and support we have been showered with! And we are most thankful for the prayers of the saints, our brothers and sisters in the Lord. We know the "effectual, fervent prayer of a righteous man avails much." (I think I quoted that right.) We know we are here to give glory to our God and hope that we can share the love of Jesus with those who are in the same boat that we are in right now. He is so faithful and He is so good!
With all that aside, however, Jonathan has been doing pretty well. He has been on three antibiotics to fight the types of bacteria they have found in his blood. His fever has been under control. He really hasn't had one since about a day after they started administering the antibiotics. But here is the flip side, and the area in which we are now asking for prayer. One of the bacterial infections being targeted is a common one, some sort of staff infection. The other infection is from a much less common strain and the doctors have been concerned that is coming from his Hickman line. They looked into the line with an ultrasound and found a small clot. Then they tried to clean the bacteria out of the line with an ethanol block. I guess that didn't work. Two groups of doctors have been discussing the removal of the line, the Oncology team and the Infectious Disease team, and they have finally come to the conclusion that it needs to go. So tomorrow (6/20) Jonathan will again be put under with anesthesia and be in surgery sometime in the morning. Please pray that all goes well concerning that. We'd also ask for prayer as they will have to put an IV into his arm for the time being. They are thinking they may replace the Hickman as soon as Monday.
Jonathan, otherwise, has been living the hospital life. He's getting physical therapy, occupational therapy, he now has little orthotic braces to help him in learning to walk. Once in a while he's getting music therapy. He's eating great. The nurses, doctors, CNA's all love him.
And we are thanking the Lord for a friend who is with us for a few weeks to help out with our children, Corrie Zastrow by name. What a blessing! She has made it possible for mommy to get to spend a little time with Jonathan as Patience has been having a runny nose and isn't allowed on the oncology floor.
We are so so thankful for all the love and support we have been showered with! And we are most thankful for the prayers of the saints, our brothers and sisters in the Lord. We know the "effectual, fervent prayer of a righteous man avails much." (I think I quoted that right.) We know we are here to give glory to our God and hope that we can share the love of Jesus with those who are in the same boat that we are in right now. He is so faithful and He is so good!
Friday, June 13, 2014
2 Weeks Down
Was it yesterday that I told you that Jonathan was doing well with an NG feeding tube? Well, as he woke from nap time yesterday he pulled that thing back out. :/ ... :) And now that it is out we are up for the challenge: can we get enough calories into this boy? and can we convince him to take his oral meds? I hope so. It is nice to have one less tube to get tangled in.
Tomorrow Xav flies to Great Falls and will be driving back on Sunday with Xavi and Moriah in our minivan. It will be good to be all together again. It's been two weeks since we arrived at Seattle Children's Hospital. When we kissed our two older children and said our good byes, leaving them in grandma and grandpa's care, we didn't know that we would be whisked away that night.
...I posted on Facebook a couple hours ago. Jonathan has a fever. I think it is actually an expected part of going through chemotherapy, but still not pleasant, and still something the doctors want to stay on top of as the immune system is in no way able to do its job. Jonathan's fever got up to about 103°. He has been given Tylenol and antibiotics already. Last checked his fever was still over 100°.
Thank you, brothers and sisters, who are lifting up our son in prayer.
Tomorrow Xav flies to Great Falls and will be driving back on Sunday with Xavi and Moriah in our minivan. It will be good to be all together again. It's been two weeks since we arrived at Seattle Children's Hospital. When we kissed our two older children and said our good byes, leaving them in grandma and grandpa's care, we didn't know that we would be whisked away that night.
...I posted on Facebook a couple hours ago. Jonathan has a fever. I think it is actually an expected part of going through chemotherapy, but still not pleasant, and still something the doctors want to stay on top of as the immune system is in no way able to do its job. Jonathan's fever got up to about 103°. He has been given Tylenol and antibiotics already. Last checked his fever was still over 100°.
Thank you, brothers and sisters, who are lifting up our son in prayer.
Thursday, June 12, 2014
"Zero"
We still haven't reached "zero". We are waiting for Jonathan's neutrophil count to be zero before it starts to come back up. Jonathan's count has been below 200 for the last few days, which the doctors call being neutropenic. Jonathan hasn't needed any transfusions for the past couple days. He just seems to be doing great! And we are so thankful!
He is getting lots of attention from nurses, CNA's and doctors who all love to see him flex his muscles. We'll say, "Are you strong, Jonathan? How strong are you?" And, with the biggest smile, he is ever so happy to put his little fists in the air and show off a bit.
I think it was the second day we were here that they put an NG tube in through Jonathan's nose for feeding. This has made giving him his oral meds a lot easier. It has also assured us that he is getting enough calories. He has always been a pretty good eater and with the calories through the feeding tube, on top of his already eating, our little boy is starting to look a little plump. :) So cute! And his energy levels seem a lot higher than when we first checked in.
The Lord is good!
He is getting lots of attention from nurses, CNA's and doctors who all love to see him flex his muscles. We'll say, "Are you strong, Jonathan? How strong are you?" And, with the biggest smile, he is ever so happy to put his little fists in the air and show off a bit.
I think it was the second day we were here that they put an NG tube in through Jonathan's nose for feeding. This has made giving him his oral meds a lot easier. It has also assured us that he is getting enough calories. He has always been a pretty good eater and with the calories through the feeding tube, on top of his already eating, our little boy is starting to look a little plump. :) So cute! And his energy levels seem a lot higher than when we first checked in.
The Lord is good!
Tuesday, June 10, 2014
So here we are...
Jonathan seems to be doing well. His blood counts were actually lower yesterday than they were today. The doctors said that is normal, they will fluctuate a little as they go down and as they come back up. Right now, daddy has Jonathan out "driving" (see photos) for a few laps around the oncology floor.
Here is a little more info about our time here, especially for friends who haven't been in touch through Facebook: The doctors estimate that we will be here six to eight months, going through four rounds of chemo (the first one is underway). We are in-patient for now, but we expect to get to leave, here and there, when Jonathan's immune levels are high enough.
Here is a little more info about our time here, especially for friends who haven't been in touch through Facebook: The doctors estimate that we will be here six to eight months, going through four rounds of chemo (the first one is underway). We are in-patient for now, but we expect to get to leave, here and there, when Jonathan's immune levels are high enough.
Monday, June 9, 2014
First Post
Hi! Ursula here. (Jonathan's mom.) Brother-in-law Chad offered to set us up with a blog so that we could keep our friends in the know about our little Jonathan. Which is especially nice for friends and family who are not facebookers. :) So here's our first post. Let's see if we're doing this thing right.
For those of you who are just tuning in here is a little to fill you in...
For quite a few months, now, Jonathan has been dealing with congestion in his lungs. In February we found a spot of pneumonia and he was on a couple rounds of antibiotics. He just didn't really get better. He kept running fevers. We thought teething might be causing some of his troubles. But he just seemed to be getting progressively less healthy. He was looking pale. He was getting these little red freckles. Finally I noticed more bruises than usual. With a little internet research into these symptoms I had myself pretty much convinced that he had leukemia. I, however, do have hypochondriac tendencies and people around us thought that Jonathan still looked pretty good. Still Xav and I knew something needed to change for our little boy, and if it was leukemia we knew it needed to be dealt with more quickly. Well, he had blood work done on the morning of Thursday, May 29. By that afternoon we knew that his results indicated leukemia. We opted to go into the ER that evening. By the grace of the Lord our timing must have been "just in time". We were transported via medi-flight and arrived at the Seattle Children's Hospital on Friday morning at about 6:00. After a more specific diagnosing of the leukemia (AML-M7) Jonathan started his first round of chemotherapy Saturday evening and received it continuously for four days.
We are now in the waiting and watching phase as his immune system has to take the hit along with all the cancer cells. It is supposed to reach ground zero over the next day or so and then is expected to build itself back up over the next couple of weeks.
Jonathan received a transfusion of platelets yesterday and a blood transfusion this morning. Labs are done on his blood every morning to keep track of what he needs so that they can fill in the gap until his own blood is able to do its job again.
For those of you who are just tuning in here is a little to fill you in...
For quite a few months, now, Jonathan has been dealing with congestion in his lungs. In February we found a spot of pneumonia and he was on a couple rounds of antibiotics. He just didn't really get better. He kept running fevers. We thought teething might be causing some of his troubles. But he just seemed to be getting progressively less healthy. He was looking pale. He was getting these little red freckles. Finally I noticed more bruises than usual. With a little internet research into these symptoms I had myself pretty much convinced that he had leukemia. I, however, do have hypochondriac tendencies and people around us thought that Jonathan still looked pretty good. Still Xav and I knew something needed to change for our little boy, and if it was leukemia we knew it needed to be dealt with more quickly. Well, he had blood work done on the morning of Thursday, May 29. By that afternoon we knew that his results indicated leukemia. We opted to go into the ER that evening. By the grace of the Lord our timing must have been "just in time". We were transported via medi-flight and arrived at the Seattle Children's Hospital on Friday morning at about 6:00. After a more specific diagnosing of the leukemia (AML-M7) Jonathan started his first round of chemotherapy Saturday evening and received it continuously for four days.
We are now in the waiting and watching phase as his immune system has to take the hit along with all the cancer cells. It is supposed to reach ground zero over the next day or so and then is expected to build itself back up over the next couple of weeks.
Jonathan received a transfusion of platelets yesterday and a blood transfusion this morning. Labs are done on his blood every morning to keep track of what he needs so that they can fill in the gap until his own blood is able to do its job again.
Saturday, June 7, 2014
Welcome
Welcome to "Jonathan's Journey".
We have created this blog site to help keep all of you who have so blessed us with your prayers, thoughts, phone calls, gifts, etc. up to date on how things are progressing with Jonathan.
Thank you so much for loving us so well. We are confident and thankful that the Lord is both good and sovereign and that He has our son in His very loving, very capable, hands!
If you wish to contact us via email concerning Jonathan, our email for this blog is jonathansjourney2014@gmail.com.
May the Lord richly bless you,
Xavier & Ursula
We have created this blog site to help keep all of you who have so blessed us with your prayers, thoughts, phone calls, gifts, etc. up to date on how things are progressing with Jonathan.
Thank you so much for loving us so well. We are confident and thankful that the Lord is both good and sovereign and that He has our son in His very loving, very capable, hands!
If you wish to contact us via email concerning Jonathan, our email for this blog is jonathansjourney2014@gmail.com.
May the Lord richly bless you,
Xavier & Ursula
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