Praying for you, John!

Day +6 for me today. I spiked a fever around 12:30 am but have since gotten it under control. The doctors weren't concerned and said they actually expected a fever three days ago. My counts are basically bottomed out. I' getting bag of platelets as we speak and I have only received one other RBC transfusion. I've had bad mucositis in my throat. My mouth has stayed clear, but you can't really do much for the throat. John, if you've avoided it to this point, keep it up!

Tomorrow, I'll begin to receive daily neupogen shots to bring the WBCs back. All in all I really can't complain at this point and everything seems to be working out good. My girlfriend was able to come spend the weekend with me. She drives four hours every other weekend to visit. She really is the best and will one day be my wife. Keep Dana in your prayers as she travels back to Baton Rouge, LA today.

Andy

Praying for both of you. You are going through so much and really have to work for it. I hope everything goes well and your new immune system starts taking over. Andy, praying for your girlfriend as well and so happy she is supporting you through this and driving to be with you. Blessings. I had mucositis and they gave me yogurt to swallow my pills. I'm so sorry, that is painful.

Julie

John,

How's it going?

Andy,

Sorry for delay of comms. Can't say I'm too busy, but the day does get by. Slept pretty badly last night. I have been blessed to not have bad mucositis yet in traditional ways. I have one little lesion that is bothering me a bit in my mouth. Other than that, most of my discomfort comes on the other end. That and I get bad reflux and hiccups. Ugh. I try to bear it happily and with patience.

This is the second day of isolation here. Neutrophils are rock bottom. WBC still at 2.9, but almost all are eosinophils. I get my third dose of methotrexate today. Praying that doesn't send the mouth sores with a vengeance. Day +6 for me.

I noticed that you start giving yourself shots today. I'm a bit jealous that isn't on my protocol. Drs dont expect me to engraft until Day 12-15...or later. I am hoping to prove them wrong.

Other than that, we continue to closely watch my organs. My creatinine is good at 1.0, Tbili good at .2, but other liver enzymes are elevated at 80 and 200 respectively. Drs say it is a sign of total body inflammation and while higher than normal it is nowhere near where they worry yet.

My heart is going through the paces as well. My heart rate resting was low 50s or so on check in. Just checked it and hovering at 80. Again docs say normal, but I am always wary.

Glad to hear you are doing well. I know that throat is sore, but it will pass. You are strong with a strong support team. Both of us have so much to be thankful for in all of this. Keep it up and until then, GO CELLS GO!

John

Andy & John,


I know the two of you are right in the heat of the battle-please know you are in my prayers. While reading my daily devotional online @ Our Daily Bread, the following made me think of you two and lift you up in prayer to our Lord-He is our comforter!




As a mother comforts her child, so will I comfort you (Isa. 66:13). God promised to give His children peace and to carry them the way a mother totes a child around on her side. This tender message was for the people who had a reverence for Godthose who tremble at his word (v. 5).

We can depend on God's love to support us when we suffer.

Gods ability and desire to comfort His people appears again in Pauls letter to the Corinthian believers. Paul said the Lord is the one who comforts us in all our troubles (2 Cor. 1:3-4). God is gentle and sympathetic with us when we are in trouble.

One day all suffering will end. Our tears will dry up permanently, and we will be safe in Gods arms forever (Rev. 21:4). Until then, we can depend on Gods love to support us when we suffer.

May almighty God continue to comfort and keep you through this trial.

Julie

Hi all. Day +7 today! Things got more interesting yesterday afternoon when I spiked my first fever. It came down quickly with tylenol, but I got the full treatment - two new antibiotics and all the blood cultures. Unfortunately the antibiotics don't seem to be doing anything as I keep needing tylenol every 5-6 hours or so. It is scary, but at the same time I am reassured to know that fevers are normal. I just hope I don't have to wait too long to engraft and let my new neutrophils take care of the fever. I asked my nurse today about neupogen and unfortunately no one here gets neupogen shots unless they are doing an auto transplant. Given my conditioning (Busulfan and cytoxan) and the day 1/3/6/11 methotrexate, they expect me to engraft between days 14-20. I'm shooting for 12 anyway. :) I also had some diarrhea this morning which my nurse thinks is caused by the vancomycin. I still have mucositis in the lower GI tract - it is very painful at times but I am thankful so far my mouth and throat have stayed clear.

That's about all from here. Just trying to stay rested and force myself to bike, though biking with no resistance is far less interesting than walking. I look forward to getting out of this room! I still haven't needed any transfusions yet, but my platelets are down to 30 so I expect I'll need platelets soon. Hgb very gradually falling (9.8 as of last night) and WBC is down to 1.7 and still falling, with ANC only 0.05.

Andy, how are you holding up? I'm glad Dana is able to make the drive to see you regularly. I can't imagine this is easy for her either. When you find the right one, hold on to her. :)

John,

To some degree our stories are very similar thus far. Probably two days ago, I too spiked a fever. Cultures look negative at this point so it is probably neutropenic related. My biggest and most painful challenge now is mucositis. My mouth and throat are littered with mouth sores and is is painful to talk, swallow and let alone eat. I've tried so many different pain meds and nothing seems to work. I can't fully explain the agony today put me through. I've never felt such pain in all of my life. Still waiting on the white cells to start making their way back. Today, was my third neupogen shot and my white count at morning labs was 0.2.

Just when I thought I was passed the hard stuff this attacked me with full force. It is so exauhsting and I feel like it is often undersold when people discuss transplants. There has to be better medicines to make mucositis more tolerable. I'm almost motivated enough to find it because I have gotten to see first hand how horrible and painful it can be. My hope is that my neutrophils fully engraft soon, so I can start destroying the beast within me.

The only thing that gets me through these painful days is that God is looking out for me and is with me, and that this process will soon be complete. Keep up the fight John and I wish you well on engraftment.

Andy

Andy,
I too gain strength from those two things: knowing God is control, and knowing the worst period will be over soon. I am praying hard for your engraftment and resolution of the mouth sores. My mouth is getting more tender every day but i am thankful I can still eat. My platelets dropped to 13 yesterday and today I started getting weird rashes and petechia (red spots) in various parts of my body because of low platelets. Thankfully I will get my first platelet transfusion tonight as my platelets were 8 on tonight's labs.
My fever has stayed down today without any Tylenol, but the doc said he expects it will come back. I hope to prove him wrong. :)
John

Andy and John you are both in my prayers. Keep strong the worst is almost over and once you engraft you will feel better with each pasding day!

Karen

Thank you all for the support. This group has been such a blessing to help me get through this whole process thus far and I'm sure that will continue.

I hope I have hit bottom because the last two days have been pretty brutal and I'm ready for things to start getting better. I started getting a rash on my arm on day +7 as well as petechia on my legs. No one was too impressed and I got some cortisone for itching, but by yesterday it had spread to both arms and everyone wanted to see it. Dermatology was concerned about infection but the derm, docs, and nurses thought it couldn't be gvhd because I haven't engrafted yet. My main doc came in at 9pm and said he thinks it is gvhd though, specifically something called hyper acute gvhd that can show up before neutrophil engraftment if your donor lymphocytes are really ticked off. I spiked another fever yesterday evening and also have been having some shortness of breath, and together these symptoms pointed to gvhd. We got very scared last night, but the doc was reassuring that with my rare disease I could act differently that other patients for whom early gvhd is a bad sign.
Thankfully the skin biopsies came back unremarkable from a gvhd standpoint. My fever stayed down after one dose of Tylenol, too. And though the rash has now spread to my chest and back, it hasn't expanded to the typical gvhd pattern. I am still very nervous about gvhd, but relieved and thankful to avoid that diagnosis so far. If it changes into more of a gvhd presentation they will start me on high dose steroids. Please help us pray that this rash doesn't turn into gvhd.
Andy, how are you holding up? Any sign of engraftment yet?

Andy,

I am so sorry you are suffering so much with mucositis.I only had one and ended up on Tpn for two weeks. I can't imagine the pain with multiple. I agree that the impact of mucositis is bit fully communicated. I have had 8 bmb and breeze through those with nothing but litacan so consider my pain tolerance to be very high. Praying for engraftment. To quote our Lea, "go cells go"

Julie

John,

I am so sorry you've had the added worry of early gvhd. I know the balance and timing of that is tricky. I'm so happy you are staying with us so we can learn with you as your situation is unique. Praying that this is not gvhd and that engraftment happens soonest.

Blessings

Julie

John,

I'm sorry about your rash issues. As you have experienced, this process will throw all sorts of curve balls at you. You are handling it well and the doctors are staying on top of whatever it is.

My doctors believe that I have engrafted. I should be stopping the neupogen shots today and my hemoglobin and platelets are beyond the transfusable range. I'm still dealing with a recovering mouth and throat from my mucositis episode, but the fellow here says because of my white count that it should be better in a day or two.

My mouth and throat have gotten taken for a ride. That's essentially the stuff that is holding me back from being discharged currently. My medications are IV right now due to my throat and I'm on a pain pump which I can't be on before I get released. So that's my checklist for now.

Andy

Andy - thanks for your latest update. How are you doing now? I hope (and expect) the mouth sores and mucositis are mostly healed by now. Hope you will be home by thanksgiving!

I am getting better. Everyone warns you about how dark it gets during the +8-12 ish range, but even with the warnings I wasn't prepared for how grim it would be. My rash was pretty bad at one point and several times the doctors were on the verge of calling it GVHD and giving me 2mg/kg of IV steroids. Thankfully it has mostly resolved with topical steroids and now it is only on my legs with a tiny bit of residual redness on my arms, chest, and back. They never diagnosed it officially, but were leaning toward "cytokine release" of my dying eosinophils... similar to engraftment syndrome seen in autologous transplants. My mouth sores and mucous got worse after the day +11 methotrexate, even though my counts started climbing then. They are now starting to heal. My ANC was 0.43 last night and my nurse expects it to be above 0.5 today which would mean I could leave my room! I can't wait to get out of here. I have been in neutropenic isolation for 10 days now (day +4 through today, day +14).

Although my neutrophils and platelets seem to be engrafting, my eosinophils are going back up too. We are worried about that. The doctors don't know what to think since my disease is so rare, but they aren't worried yet - they want to keep watching and I think they are optimistic that the eosinophils will calm down soon. Now they are at 0.65, and at their lowest they were only 0.41. So we don't even know if they are all donor eosinophils or if some of mine are still left. For now, we are trying to focus on the good things - I am feeling better, haven't had a fever in almost two days, and the rash is healing.

One day at a time. Go cells go!

John