Day 177

We are still reeling from yesterdays news!
We still shake our heads and ask "Did that really happen?"


John, although beginning to build a new immune system, is still very weak, very susceptible to infection. Since Sunday he has been having on and off fevers, not super high but ranging from 100 to 102. Today was the 102 fever. We called his nurse to talk, all the while I am praying "Please don't send us to the ER"

They asked him to come the clinic, get a chest x ray and blood work and we would go from there.
We were both pretty calm, I mean the transplant is the most important thing to us and that's going great and we must expect more bumps in our journey, infections will come until his body can fight them.

The good news, and O how it feels good to say the phrase twice in  2 days, is that his chest x ray is totally clear! All blood work so far is negative, although many viral, bacterial and fungal tests have been sent. So the nurse said it is safer for him to go home and rest and if any tests come back positive she will let us know.

O and in 24 hours all his counts are steadily still going up!

So here I sit and type and out of the corner of my eye I see my sleeping John, all tired out from a long day.
But he is home and it is so very good :)

Day 176- The Day we have waited for!

It's been 176 days coming....

Finally, O finally!
The clinic at the Dana was so busy today, all our appointments ran late. We waited and waited to see Bonnie, our lovely nurse.
"I wonder if the counts went up?" "What if they went down?" "What if the boost did not work?" What if it did work?" - Our minds we racing.

Then a beaming Bonnie walks in.
"Did anyone tell you?" she asked
"Your counts are amazing! I can't believe I get to give you the good news!"

So I am sure you have gathered it looks like the boost is working and John's graft is getting stronger by the day! Platelets are up, Red cells up and white cells up! In fact it is working quicker than anyone expected!
It's the day we have been waiting for.
Suddenly every tear seems worth it.
We have hope again, this could really heal John. Really heal him.

Praise God, it's Him all the way. His promise is coming to pass. He deserves all glory!

We are so glad to share this amazing news with you! :)

Let's see how it all began...

On January 5th our bone marrow journey began! I cannot believe I never shared this video of Ian's stem cells being given to John. This was such an exciting day for us, the "the first day of the rest of our lives" we said.
We still believe it, after everything that's happened.

We live in faith
So what does that mean?

That was my challenge yesterday. John and I both woke up feeling a little under the weather so I got up cleaned everything and proceeded to sit there in a mask; John got up feeling yukky! Took his temp 100.8. Now technically I am meant to call his doctor but I stepped back and asked myself "Do I truly believe that taking my husband to the ER is a good idea?" Of course the answer is no.

So I sat back and I did something the old me, 6 months ago me, would never have done. I turned to John and I said "Ok I am going to take your temp every fifteen minutes, I am going to give you Dayquil and you are going to drink lots of fluid and rest...I believe God is building a normal immune system in your body so today I am going to treat you like a normal human being with a sniffle"
I did
No more temps after that. He woke this morning feeling much better.

Now some of you may say that was foolish but I believe it was the right thing to do and as a consequence he is feeling better and he did not have to go into hospital where he has picked up nearly all of his nasty infections that past few months!

Anyway thanks for your prayers, we see the doctor on Wednesday- praying and hoping for more good news!

Thank you!

Please enjoy a video of the Caton's being their normal fairly awkward selves! It's not scripted, I am sure you cannot tell lol :)

Day 172

John REALLY enjoying his first Dunkin all year!

Clinic day! Normally these drag out and John needs every blood product under the sun!

Today was NOT one of those days :)

We arrived and for the first hour we had 3 nurses just trying to find a vein they could use to take blood, John's body has been through so much his veins are still recovering; they seem to hide when nurses come in!
lol they even wrapped his arm in hot packs which eventually worked!

The good news is that John needed no infusions today! No blood products! A good sign :) Keep praying :)

Day 171

John after his clinic appointment Tuesday

We wait and we wait and we wait some more!
This has been the slowest two weeks as we wait to see if the boost have been successful.
John saw his doctor on Tuesday and they seem positive that the boost will work. John's counts were still low but had no tanked which could be a good sign; all he needed on Tuesday was IV magnesium when normally he needs the works! (red cells, platelets etc).
John is looking better too, still run down but doing well.
He is even beginning to get a little more hair back :)

Can you see a little bit of hair coming through?

John goes to clinic tomorrow and Tuesday and we should be able to be to tell if the boost is working this week or not, obviously it will take a long time to see if it is fully works. Please keep praying, this is an anxious time.

Day 165

Friday we went to see John's doctors.
His counts were low which we expected but it seems they decline far less quickly than before.
These past few months his counts (red cells, white cells, platelets) would tank within day's but John's seem to drop a little slower now. This is probably due to some of John's drugs being lowered.
It is still too early to tell any results from the boost.

We believe the trend is up.

We see the doctor again on Tuesday.

Day 161

John with his T Rex balloon from Ian and Beth

Home! Home! Home! Home!

On Monday June 13th John was finally released after 2 weeks back in Brigham and Womens Hospital with many many infections.

Once one cleared, another came.

It felt like it never ended.

While he was admitted the doctors performed the stem cell boost, taking cell from Ian. Even before the boost was given John's counts began to rise and even though they are still low this is a good sign that John is finally on the way up. He has had no adverse reaction to the new cells yet but it is early days.

The next month will be crucial.

Ian, John's brother, needed to give 5 million stem cells and he gave 17 million! The doctors described this as a "super human amount".

John is still on IV antibiotics that Amanda has learn to administer as well as care for his pic line.

John's platelets have been low for months which means even simple blood draws result in bruises like the one in the picture opposite on John's arms.

He is healing. 

All counts are doing well and we see the doctor on Friday and we hope and pray for more good news :)

Day 155

Ian and Beth arrived on Sunday, what a welcome relief to have family here to support us.

One thing a bone marrow transplant does is isolate. 

It isolates you from society, home, relationships, health and even hope.

Ian has been getting Nubegen shots all week to boost his white cell count so when he gives to John it can have as many immune cells as possible. 

John has had multiple infections this week. Monday, the day he was due to be released, his blood pressure dropped, his heart rate went through the roof and his oxygen levels decreased. It was a worrying few hours. He has a new pneumonia and gall bladder inflammation. The two are unrelated and time will tell how they clear up.

Today his white cell count is up, as are his platelets; higher than they have been in weeks. His red cells are low because he is beginning to pass blood again. Our big fear is that it's the GVHD (Graft Versus Host Disease) coming back but we must resist jumping to that conclusion as there are other perfectly reasonable explanations.  For example, another infection, some inner irritation of the intestinal tract, an effect of his low platelets these past weeks or a consequence of when his blood pressure dropped. 

Please pray it's not the GVHD. It's one of our worst nightmares.Especially pray for wisdom for the doctors as if this is GVHD and they infuse more white cells then the result could be very bad as the extra cells would fuel the attack. 

Through all of this I am being reminded, mainly by Beth, to remain positive and remember what God has said.  

6 months of heartache and disappointment has worn us down...we confess we have doubted.

As I watched John have an ultrasound of his gall bladder on Monday I asked God, "What can I say to John right now? I feel so helpless and I want to say something, anything that can help"

God bought to my mind the story of Job and how in his suffering his friends told him to just "curse God and die", they were so convinced that God was allowing Job to suffer because he was sinful. But how God loved Job and had a way out for him and a greater blessing following his suffering than what he had before so I whispered in John's ear "Don't curse God and don't be tempted to give up, He does not hate you, He is not torturing you, He loves you and He will be faithful to His word"

Day 152

Here we go again...

I(Amanda) could not feel like more of broken record if i tried.

John was meant to be released today but he awoke with a headache and fever, the same symptoms he was admitted with on Tuesday.  Doctors said his chest line was infected so they removed that yesterday but today, who knows? A resurgence of the old infection? A brand new one? We just don't know. All I know is it's another night of being apart.

John has spent more nights away from me this year than with.

Ian and Beth arrive today for the boost which will hopefully take place this week. Unfortunately that's complicated too as doctors can take the cells from Ian 2 different ways and they have not decided which yet. We will find out on Monday. 

John and I are fighting to stay positive and it's a fight we could easily loose, and often have moments when we do. We want to hold fast to God's promises to us but to be honest that is not easy. 

His ways are higher than our ways

His thoughts higher than mine (Issiah 55)

If I were God I would not have done this year the way He has but I am not God and my reasoning and understanding are not like His. I guess this is what it means to trust.

I know deep in my heart, under all my tears and frustration, that God is good and loving and powerful.

On a different note we would like to thank those who have been so generous as to bless us through buying things from John's wish list. If you are interested in helping us in this way you can visit:

http://www.amazon.com/John-Caton/wishlist/27QSOK99I3M0F/ref=cm_wl_search_1

Please complete a gift note as then we know who has sent it.

(someone very kindly bought John a knee pillow and electric blanket but we do not know who so please if it's you drop me an email (electromand.ywam@gmail.com) or facebook me as we would like to thank you!)

Day 149

It's happening very quickly now.
Doctors have rushed the stem cell boost to next week! Ian and Beth arrive this weekend, pre-op Monday and Thursday is the big time. It's quite overwhelming.
I got back from Pittsburgh and I knew John did not look as well as when I left. We arrived at clinic on Tuesday and he had a fever of 103; they admitted him. He has some sort of bacteria in his blood, that's all I know right now.
So this is it! Our final shot? I don't know but it sure feels like it sometimes. To say this year has been overwhelming is an understatement. I won't lie it has been a fight every day to resist anger, self pity and hopelessness; some days I win, some days I loose- other days I do both. It's like walking through Jello.
Thank you to all those who have been so encouraging to us, I owe my avoidance of a mental breakdown thus far to you! :)
Seriously though your words and love have been amazing. So many of you tell me (Amanda) how strong I am but I want to confess that I am not strong, I am weak, so weak and it is only through God's strength that I even get up in the morning. Most mornings I don't even ask God to help me and yet He does; if that's not true love I don't know what is.
He meets me, though I do not always meet Him.
I will keep you all posted on next weeks events. I have said it many times and it is yet to come true but we hope next week is the beginning of John's climb to ultimate health and healing.

I told John "The Best is yet to come"....

Thanks so much to those who have bought of our wish list, how overwhelmingly wonderful and kind of you all.