Prayer needed more than ever (Facebook Oct 25th)

All, 

Please continue or renew your efforts to lift up this wonderful little guy and his sweet family before the Lord.  I can't imagine what they are feeling or going through having to walk this path with their son.
(Chad)

"Jonathan hasn't seemed like himself since his extreme pain episode. His eyes have been rolling back and have been going cross eyed. He hasn't been signing or smiling. It has been hard to tell whether he is really seeing us. Today he just seems unable to really control his bodily movements and has had some bouts of flailing and hoarse screaming and he seems pretty scared. There is a thought that he may be having seizures. A neurologist visited us and we are in line for an MRI this afternoon. And once again we ask for you to lift him up to the One who is more than able to make everything right. We are depending on Him to see us through all of this."

Recent Updates...

Below are some Facebook updates from this last week:  Thanks so much for praying!


September 15th:
Jonathan is doing better today!  He got to take off the mask this morning and has been using a nasal cannula with good results. He has been getting rid of some of his fluid retention with the help of diuretics. We are still in the PICU, but things are looking a bit better today!

September 14th:
Not much to report on Jonathan. He is still in the PICU. His ins continue to be more than his outs and he is still all puffed up. They've added another diuretic on top of the lasix. He has a little mask covering his eyes, nose and mouth, creating a seal like a scuba mask, which is pressurizing the oxygen going into him to help fill his lungs. They had switched his NG feeding to ND feeding and now they have stopped the ND and are giving him TPN IV, this is because they can't be sure he isn't refluxing his feeds and aspirating them. The docs can't really say why this is all happening, just trying to treat the symptoms until his body gets back to doing its job. 
Xav is still on for nights with Jonathan. He is getting pretty tired. Lord willing, Grandpa Xavier will be here tomorrow evening and enable Xav to get some much needed rest.


September 13th:
Jonathan moved into the ICU this evening. His breathing has been too labored for too long. His body has continued to retain fluid. I'll try to update again in the morning. Please pray for our puffy son and his tired daddy.


September 10th:
The doctors gave Jonathan lasix yesterday which drained some of the excess fluid that has been building up in him. The albumen in his blood was a little low which somehow figures into the proper functioning of the arteries in getting rid of excess fluid. So this morning they gave him albumen and lasix again. He's still puffy and acting uncomfortable but not quite as puffy as he was yesterday. And still needing some blow by oxygen.

Jonathan's lungs have been a big concern lately. He has been dealing with fluid building up around them. He's had lots of chest X-rays lately and the one from a few minutes ago shows more build up of fluid and possibly some collapse of his lungs. He is visibly laboring to breath. Xav's been up with him since 4am. ...Seems like these bigger lung problems have popped up after being put under for a CT scan a few days ago and then again for a broncoscopy and wash to see if anything bad is growing in his lungs. Jonathan's poor little body is swollen. His eyes were nearly swollen shut yesterday. ... He's not in the ICU yet, so we think that is a good sign. ...Just still asking for prayers, in Jesus name. We are trusting the Lord. Jonathan's life is in His hand. He is good and He loves us. The doctors are trying to do what is best but their ability is so limited. So glad we can call on the One Who is more than able, Whose wisdom is infinite.


September 6th:

Jonathan started getting some of his ANC (absolute neutrophil count) back a few days ago. So that is something positive to think on. But other than that he is seeming pretty uncomfortable. He had a CT scan this evening to see if there might be fungal growth in his lungs. No news on that yet. He's had a lot of low grade fevers over the past week and a lot of throwing up and they are trying to get to the bottom of it. Just requesting more prayers for our little boy, and while you are at it would you please throw in a prayer for the rest of us, that we would find refreshment in Jesus and be walking with Him. Thanks. 

Like

Thank You!

I've been so wanting to get a new post written up for our "Jonathan's Journey" blog. ...Life. ...I've been posting a little on face book. Wish I could just get to typing every day. Right now I have my Jonathan and my Patience napping in Jonathan's hospital room and Xav has the older two walking to Great Clips. Xav and Xavi are due for hair cuts. 

Jonathan has had a lot of outpatient time over the past few weeks. He was discharged on August 4th, after his second round count recovery. He had a whole week of freedom, although still tied up with the NG tube and needing IV antibiotics. We made it to the aquarium during that time. He made it to church two weeks in a row as he had gotten a four hour pass the weekend before. 

He was readmitted for his third round of chemotherapy on Monday, August 11, and had chemo administered every 12 hours for five days. We've gotten used to being inpatient for whole rounds so we were kind of surprised and a bit uneasy when we learned that Jonathan would be released after the five days were done. So we, once again, were all together at the Ronald McDonald House on Saturday evening, August 16. We prayed that Jonathan wouldn't get any infections and watched for signs of them. He had to stay in the room (in isolation) during this count dropping time, except for going to the hospital twice a week for labs to keep track of what was happening in his blood.

After nearly a week of being "free" the fever did strike.

Patience actually got a fever first, on Friday morning. On Friday evening, August 22,  Jonathan was restless at bed time and sometime just past midnight he started throwing up in his bed. We took his temp. Yes, fever of 102 point something. He was getting the shakes. Xav tried to get a hold of the on call Hem/Onc doctor, but that was not seeming to go fast enough so I kissed my husband and son as they left our room and headed for the ER. 

We knew that Jonathan would be readmitted upon becoming febrile and would be inpatient until count recovery. So that is where we are at now. They started up antibiotics to get the infection/fever under control. They also changed some of his meds that he has been on for a while as he has developed a sensitivity to one, causing his skin which was already red from sunburn to become more red and swollen. 

Jonathan's ANC is 0. Every morning, as the doctors make their rounds and gather in Jonathan's room to go over his situation and plan for the day, our ears perk up to hear those blood count numbers. Are they going up yet? Will he need another transfusion? He's had a couple platelet transfusions this round already. Looks like he will need a blood transfusion tomorrow. ...Thank you, blood donors, for making this treatment possible for our little Jonathan

Thank you, Lord, for carrying us through all of this, for having good plans, for the love that's been showered on us from family and friends and even strangers! Thank You for the sweet nurses and doctors and CNA's and maintenance people at the hospital. Thank You for allowing us to stay at the Ronald McDonald House and be a part of people's lives there and for the meals from volunteers there.  You have given us so much to be thankful for. 

Thank you all for praying for Jonathan and us. Thank you for being a part of our lives and for loving us! Jesus bless you!

Quick Update

Xav and Xavi accompanied Jonathan back into Seattle Children's Hospital this morning to start chemo round number three. The girls (mommy, Moriah and Patience) will join them over there in a bit, after getting some laundry going in the Ronald McDonald House "RMH" laundry room. ...We had a great week together as a whole family! We even made it to the aquarium on Saturday! 

PNJ in their mobile bunk bed

Is that a "strong arm" I see?!

Xavier & Moriah (and No, they didn't do that to the tree!)

Someone just placed a little life in that sea creature!

Chip off the ol Block!

No words necessary :)

Smiles!  Proof that Jonathan is a chip off the ol block!

Nothing much new... THANKS!

Nothing much new here.

Jonathan's numbers are back down to zero again, have been for the past few days. He got a blood transfusion this morning. His vitals have been stable. He still doesn't want to eat, but that is okay for now because they are putting nutrition directly into his blood. Isn't that crazy?! With the GI feeding tube they could bypass his mouth, but now who even needs a stomach?! He... still manages to get sick though, and gave back some of his oral meds this evening.

Our stay is feeling a bit long already. Xav and I are taking turns staying the night in hospital with Jonathan. Tonight Patience and I are here, and Xav is at the Ronald McDonald House with Xavi and Moriah. We've only been here a month and a half. We've chatted with some who have been staying at the Ronald McDonald for two years!

I just so want to thank anyone who has contributed to us financially. Xav, our family's provider, had his heart set on looking for work here the moment we settled into our first hospital room. He was praying for work. But I was praying that he'd be able to stay with me. I knew I couldn't manage family life in this setting without him. Well, the Lord is so so kind to me. Our needs have been met and Xav is getting in some really great parent-child relationship time.

I am so THANKFUL!! Thank you friends and family and thank you, Lord! We are so undeserving, but we are so thankful.

Ursula

Thank you, Chad, for filling in! Here is what I just posted on Facebook...

 

Good morning. I am just wanting to update on Jonathan a little bit. He wasn't doing so well yesterday. He has been dealing with diarrhea for a few days, also still vomiting a few times over the past few days and seeming not too comfortable. (Maybe the flu that Xav and I had?) Very early in the day yesterday he spiked a fever of 104, his heart rate was reaching 200 and his blood pressure was too l...ow. Xav called me early and told me to wake Corrie and to start praying for Jonathan. We prayed, in Jesus name. Xav told me there was a possibility of Jonathan going to the ICU.

I made it in time for doctors' rounds at a little after 9am yesterday, leaving the kids sleeping at the RMH, but taking Patience who stayed sleeping in her car seat . The docs were still uncertain of the root of the problem, labs weren't quite complete yet, but they were guessing Jonathan had an intestinal infection. Xav thought it was our flu, but the Attending Doctor shook his head when Xav suggested that. He said there is a common intestinal bacteria that can cause infection, especially after having had antibiotics and especially in the hospital, and with the lab results that had come back so far that morning ruling out other possibilities, that was their expectation. So they started Jonathan on a broad spectrum antibiotic. All his vital signs were needing to improve. They seemed especially concerned about his blood pressure, seemed like that was key, if it didn't improve he'd be going to ICU. They gave him blood transfusions and extra IV fluids.

Corrie brought Xavi and Moriah over to join us an hour or so later. So we were there as a family with Jonathan. He looked terrible. His color was really pale. He was really lethargic. He's been on regular doses of meds to help with nausea and yesterday morning they added meds for fever and for pain, so it was hard to tell what was causing his sleepy lack of response, but he just didn't look good. His vitals were being checked every hour. His fever slowly came down, his heart rate dropped into a more acceptable range and his blood pressure came up enough to keep us out of ICU. He was getting blow by oxygen to keep his O2 levels up. He went from being colorless to being bright red as the antibiotics hit his system and after a while his color looked more normal. They were watching/listening for fluid build up in his lungs which could result after receiving a large amount of IV fluid. His body did get a bit puffy, but his lungs continued to check out okay.

We left him last night after feeding him a little dinner (Yay! He was eating something! Yogurt, applesauce and peas.) and after sitting up for a while to watch some children's sign language videos on YouTube. He wasn't doing great, but he was doing alright. Thank you, Lord.

Xav texted me at 2:18 this morning and told me Jonathan was getting more IV and was being moved to ICU. He texted again at 3:46am saying that Jonathan was doing good, that they were checking on him every two hours, and the nurse thought they wouldn't be there long. I didn't read these texts from him until I woke up a little before 6:00am. I tried texting back, but I'm guessing he's sleeping, he had to move all our stuff out of the room at around 3:00am. So I'm waiting to hear the details and will try to find time to pass them on. Thank you for praying for my tired husband. Thank you for praying for our fighting son. The Lord is our help. He is good.

ICU

Good morning to all those who are following this blog, praying for Jonathan, and supporting the Mercados.

We received some texts around 4am from Xav that Jonathan had been moved into ICU for monitoring.  We are thinking this is due to low blood pressure and weakness following his last Chemo treatment.  Jonathan still did his "strong arms" but only with one arm this time.

Please lift the Mercado's up this morning and bring their son before the throne of the greatest healer, provider, and friend, mankind has ever known.

His richest work in and through you,

Chad Cohoon (Ursula's Brother in Law)

A little more difficult...

Hi blog readers! I haven't been able to sit and type much so I've copied and pasted a couple of my facebook entries.

6/28/14   
     We were getting ready to be released from the hospital yesterday. Jonathan was going to have a weekend out. Xav and I had taken all sorts of teaching and instruction in order to take care of our immunosuppressed son with a line coming out of his heart. Then I did it. I lifted Jonathan out of his high chair and didn't realize his line was stuck in the chair. I nearly yanked that line right out... of his chest... well not really... But I did pull it out a little. I pulled it out far enough to keep us in the hospital for another night and to need another surgery for another Hickman line. Bummer. But the surgeons say it will be an easy surgery because they can use the current line to place a new line. The Lord knows. We again would ask for prayer for another good surgery. We may be released from the hospital yet this afternoon after surgery, which would give Jonathan a night or two with us at the Ronald McDonald House ( and maybe a trip to the zoo ).   

7/1/14
     Xav has the iPad at the hospital, I'm on the laptop at the Ronald McDonald House. This picture that Xav posted an hour ago shows a little bit of how Jonathan is doing with this new round of chemo that started today. The last round of chemo seemed pretty gentle, not much nausea, not too hard to get through. But it also didn't quite have the desired effect the doctors were looking for. The bone marro...w aspirate that they took nearly a week ago showed over 2% leukemia cells remaining in the bone marrow where they were hoping for 0%. So that meant he needed a harder hit of chemo and I guess that is what he is getting now. Our poor little boy has been throwing up and is now dry-heaving, he has a fever and his oxygen level has dropped. So this time around is seeming a lot more difficult. Please pray for Jonathan. And please pray for Xav who will be with him through the night and probably won't be getting much rest. I am so thankful that Xav is such a good daddy.

"Happy Birthday Hickman"

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!

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!

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.

"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!

  

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.

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.

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